Confused Minds, Burdened Families:

Finding Help for People With Alzheimer's

and Other Dementias

July 1990

OTA-BA-403

NTIS order #PB90-259540
Recommended Citation:

U.S. Congress, Office of Technology Assessment, Confused Minds, Burdened Families:

Finding Help for People With Alzheimer’s & Other Dementias, OTA-13A-403 (Washington,

DC: U.S. Government Printing Office, July 1990).

For sale by the Superintendent of Documents

U.S. Government Printing Office, Washington, DC 20402-9325

(Order form can be found in the back of this report.)
Foreword

Taking care of a person with Alzheimer’s disease or another disease that causes dementia

is a distressing process that may last for many years. For a variety of reasons discussed in this

OTA report, families and others often have great difficulty locating and arranging the health

care, long-term care, and other services they need to help them care for their relative or friend

with dementia. People with dementia who live alone and have no family member, fiend, or

neighbor to help them are not able to locate or arrange services for themselves and often are

not aware of their need for services. As a result, some people with dementia do not receive any

services. Some receive inappropriate services, and some are connected-sooner or later-to

an agency or individual that provides the kind of help they need.

Not all services that may be needed for a person with dementia are available. The lack

of sufficient services for people with dementia is an important public policy issue that was

discussed at length in OTA’s 1987 report, Losing a Million Minds: Confronting the Tragedy

of Alzheimer’s Disease and Other Dementias, and remains to be resolved. To plan realistically

for the care of their relative or friend with dementia, however, families and others need to know

not only what services are available but also what services are not available.

OTA estimates that there are now about 1.8 million people with severe dementia in the

United States. The recently reported results of a study in East Boston suggest that there may

be as many as 4 million people with Alzheimer’s disease at all levels of severity. Due to the

aging of the population, these numbers will increase dramatically in coming years.

This OTA report analyzes the problem of locating and arranging services for people with

dementia, presents a framework for an effective system to connect them to appropriate

services, and discusses congressional policy options for establishing such a system. One of the

main policy issues is whether the system should serve people with dementia exclusively or

serve people with other diseases and conditions as well. Some Alzheimer’s advocates and

others believe that only a system intended to serve people with dementia exclusively would

be sufficiently responsive to their unique problems and needs, whereas others believe that a

system intended to serve people with dementia and people with other diseases and conditions

as well would be more effective than a dementia- specific system in connecting people with

dementia to appropriate services.

In the course of this study, OTA has been impressed by the large number of agencies and

individuals that are trying to provide appropriate services for people with dementia and to

connect them to the kinds of services they need. To establish an effective system to connect

people with dementia to services would require the coordination and consolidation of these

agencies’ and individuals’ efforts and would undoubtedly engender some conflict and

disagreement about which agency or individual should implement the system in a given State

or community or at the national level. On the other hand, the lack of such a system means that

the continuum of care these agencies and individuals are trying to create may not be accessible

by the patients and families who need it most.

On behalf of OTA, I wish to thank the advisory panel, OTA’s contractors, and the many

other individuals who helped OTA in the preparation of this report. As with all OTA reports,

the content of the report is the sole responsibility of OTA and may not reflect the views of those

individuals.

/f/

&AA# k.

JOHN H. GIBBONS

u Director
Confused Minds, Burdened Families:

Finding Help for People With Alzheimer’s & Other Dementias

Review Panel

David F. Chavkin, Chair

Washington College of Law

American University Practicing Law Center

Washington, DC

Mary R. Barringer

Alzheimer’s Center

Southern Illinois Of Medicine

Springfield, IL

Robert H. Binstock

School of Medicine

Case Western Reserve University

Cleveland, OH

Gerald Born

Division of Community Services

Madison, WI

Nancy Nevloff Dubler

Division of Legal and Ethical Issues

in Health Care

Montefiore Medical Center

Bronx, NY

Nancy Gustafson

Visiting Nurse and Home Care, Inc.

West Hartford, CN

Rosalie A. Kane

University of Minnesota School of

Public Health

Minneapolis, MN

Kathy Ann Kelly

Family Survival Project

San Francisco, CA

Glenn Kirkland

Maryland Alzheimer’s Association

Bethesda, MD

Dennis Kodner

Department of Community and Preventive Medicine

New York Medical College

Valhalla, NY

Richard C. Ladd

Oregon Senior Services Division

Salem, OR

Grace Lebow

Aging Network Services

Bethesda, MD

Nancy E. Lombardo

Alzheimer’s Association

Concord, MA

Marcie Parker

United HealthCare Corp.

Minneapolis, MN

Diane Piktialis

Work/Family Directions, Inc.

Watertown, MA

Ray Raschko

Elderly Services

Community Mental Health Center

Spokane, WA

Burton V. Reifier

Bowman Gray School of Medicine

Winston-Salem, NC

Laurence Z. Rubenstein

VA Medical Center

Sepulveda, CA

Barbara Schneider

Elverson. PA

Mark E. Williams

University of North Carolina

Chapel Hill, NC

Rick T. Zawadski

University of California

San Francisco

NOTE: OTA appreciates and is grateful for the valuable assistance and thoughtful critiques provided by the advisory panel members. The panel does

not however, necessarily approve, disapprove, or endorse this report. OTA assumes full responsibility for the report and the accuracy of its

contents.

iv
OTA Project Staff—Confused Minds, Burdened Families: Finding Help for

People With Alzheimer’s & Other Dementias

Roger C. Herdman, Assistant Director, OTA

Health and Life Sciences Division

Gretchen S. Kolsrud, Biological Applications Program Manugerl

Katie Maslow, Project Director

Kerry Kemp, Analyst/Division Editor

Kackie Keller, Research Assistant

Pamela West, Analyst2

Support Staff

Cecile Parker, Office Administrator

Linda Rayford-Journiette, Administrative Secretary

Contractors

Sharen K. Eckery and Kathleen Smyth, University Hospitals of Cleveland

Lisa P. Gwyther, Duke University Medical Center

Nancy L. Mace, Baltimore, MD

Martha Mohler, Chevy Chase, MD

Ramon Vane, Lourdes Birba, Yasako Sakamoto-Kowalchuk, Ralph Forquera, Rose Cosgrove,

and Denise Nelsse, Los Angeles and San Diego, CA

Steven H. Zarit, Eileen MaloneBeach, and Diana L. Spore, Pennsylvania State University

Publishing Staff

Katie Boss, Publishing Officer

Chip Moore, Publishing Assistant

Debra Datcher Cheryl Davis

Dorinda Edmondson Steve Kettler

Christine Onrubia Ted Williams

Susan Zimmerman

Editor

Linda Starke (Contractor), Washington, DC

1Through September 1989

2Analyst until November 1989
Contents

Page

Chapter 1. Summary and Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Part I

Chapter 2. The Need for Public Education and Information and Referral... . . . . . . . . . . . . . . .. 73

Chapter 3. The Need for Outreach and Case Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107

Chapter 4. Questions That Arise in Making Decisions About Services . . . . . . . . . . . . . . . . . . . . . 139

Chapter 5. Concerns About the Quality and Appropriateness of Services . . . . . . . . . . . . . . . . . . 159

Chapter 6. Linking Veterans With Dementia to VA and Non-VA Services . . . . . . . . . . . . . . . . . 201

Part II

Chapter 7. State Programs and State and Community Service Systems

That Link People to Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227

Chapter 8. Agencies That Might Constitute a Uniform National Linking System . . . . . . . . . . . 261

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 347

Appendix A. Method of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .387

Appendix B. Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 390

Appendix C. Reports by State Alzheimer’s Disease Task Forces

and Advisory Committees . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .392

Appendix D. Glossary of Acronyms and Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 395

Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 407
Chapter 1

Summary and Overview
CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Overview of the Problem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Congressional Interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Locating Services for Mrs. D: A Case Example . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

FACTORS THAT DETERMINE THE KIND OF SYSTEM THAT IS NEEDED

TO LINK PEOPLE WITH DEMENTIA TO SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Characteristics and Care Needs of People With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Characteristics of Families and Other Informal Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

Characteristics of the Service Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

REASONS WHY PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS

MAY NOT USE SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

FRAMEWORK FOR AN EFFECTIVE SYSTEM TO LINK PEOPLE WITH

DEMENTIA TO SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Four Essential Components of an Effective Linking System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28

Criteria for an Effective Linking System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

The Role of a Linking System as a Source of Potential Support . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

AGENCIES, ORGANIZATIONS, AND INDIVIDUALS THAT LINK

SOME PEOPLE WITH DEMENTIA TO SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35

Private Agencies, Organizations, and Individuals That Link Some People

With Dementia to Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36

Federal Agency Programs That Link Some People With Dementia to Services . . . . . . . . . . . . . . 41

State programs and Service Systems That Link Some People With Dementia to Services . . . . 43

Community Service Systems That Link Some People With Dementia to Services . . . . . . . . . . . 46

Agencies That Might Be Designated To Constitute a National

Linking System for People With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

OTHER CONSIDERATIONS IN CREATING AN EFFECTIVE LINKING

SYSTEM FOR PEOPLE WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49

Special Problems in Linking Ethnic Minority People With Dementia to Services . . . . . . . . . . . . 49

Questions About Making Decisions About Services for People With Dementia .,.,.........52

Determining g the Quality and Appropriateness of Available Services . . . . . . . . . . . . . . . . . . . . . . . 54

Linking Veterans With Dementia to VA and Non-VA Services . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

The Relationship of the Linking System to Congressional Proposals

for New Long-Term Care Benefits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58

Other Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60

POLICY ISSUES AND OPTIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

BOX

Page

l-A. beating Services for Mrs. D . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Figures

Page

1-1. Essential Components and Criteria for an Effective System To Link

People With Dementia to Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29

1-2. A Brochure Publicizing Elderlink, a National Telephone Information and

Referral program for Elderly People Initiated in Illinois in 1989 . . . . . . . . . . . . . . . . . . . . . . . . . 40

1-3. A Prescription Form for Use by Physicians in Referring Alzheimer’s

Patients to Community Services, 1990 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 61

Tables

Page

1-1. Coexisting Medical Conditions in 100 People With Dementia Served by the

Community Mental Health Center in Spokane, Washington, 1988 . . . . . . . . . . . . . . . . . . . . . . . 14

1-2. Services That May Be Needed for People With Dementia and Their Families . . . . . . . . . . . . . 16
Chapter 1

Summary and Overview

INTRODUCTION

In 1987, OTA issued a comprehensive report

on Alzheimer’s disease and other diseases that

cause dementia, Losing a Million Minds: Confronting the Tragedy of Alzheimer’s and Other

Dementias (831). That report described the

devastating impact of dementia on the person

and the equally tragic consequences for the

person’s family. It discussed the care needs of

people with dementia and the complementary

roles of families, community agencies, and

other paid service providers in meeting those

needs. The report described Federal policy

options to increase services, educate and train

service providers, improve quality of care, and

provide adequate funding for services through

public and private sources.

A survey of family caregivers of people with

dementia, conducted for OTA in 1986, raised

one issue not addressed in the 1987 report. The

survey found that, in addition to many other

problems, family caregivers have great difficulty locating services. Many caregivers said

they did not know what services were available

in their community. When asked what kind of

help they needed to care for their relative with

dementia, the caregivers identified the need for

assistance in locating people or organizations

that provide care as second most important,

following only the need for a paid companion to

give the caregiver a rest (926).

Many of the State task forces and committees

that have studied the problem of Alzheimer’s

disease and other diseases that cause dementia

have noted the difficulties people encounter in

locating needed services (see reports from

Arizona (37), California (99), Connecticut (142),

Florida (215), Georgia (246), Illinois (351),

Iowa (360), Kansas (396), Kentucky (408),

Maryland (497), Massachusetts (500), Michigan (530), Minnesota (536). Missouri (543),

Nebraska (592), New Jersey (599), New York

(602), Ohio (621), Oklahoma (626), Texas

(790), Virginia (870), and Wisconsin (920)).

The Wisconsin Task Force on Alzheimer’s

Disease and Other Irreversible Dementias reported:

Alzheimer’sfamily members ofien tell distressing stories about not knowing where to go for

help, going from one service provider to another

in a vain search for assistance, and being

misinformed about the availability of services

or eligibility for programs (918).

Family caregivers told the task forces and

committees in other States:

I tried to ascertain just where and what I

might do to get some help. My help came from

a support group. Nobody else knew anything

(599).

After a 3-year search, I am just learning of the

different resources that are available. Why

didn’t I know sooner (412)?

We just scratched and dug on our own (531).

Many of the services and resources are,

indeed, available. They are not well publicized

so people don’t know where to go for help. As

an educated person who is part of the health care

system, I found it difficult to obtain help for my

father. Someone older, more upset, or confused

and not well versed in our system might have

found it impossible (412).

An adult day care provider told the Maryland

Task Force: “Families don’t even know what to

ask for and may go through a maze of blind

alleys before help is obtained’ (696). The Texas

Alzheimer Task Force concluded that: “One of

the greatest burdens of the family caregiver is

the lack of knowledge of community resources

and the ability to obtain these resources’ (790).

This OTA report analyzes the problem families and others face in locating and arranging

appropriate services for people with dementia

and discusses Federal policy options for the

development of a system to resolve the problem.

This chapter provides an overview of the

problem and discusses the factors that determine

–3–
4 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

what kind of system is needed to link people

with dementia to services, including the relevant

characteristics of people with dementia, of their

families and other informal caregivers (if they

have any), and of the service environment. The

chapter presents a framework, including the

essential components and criteria, for an effective system to link people with dementia to

services. It describes many of the public and

private agencies, organizations, and individuals

that currently help some people with dementia

and their caregivers find services. Lastly, the

chapter identifies and discusses Federal policy

options with respect to the development of an

effective system to link people with dementia to

services. The policy options address questions

such as whether the system should serve people

with dementia exclusively or other people as

well, whether the agencies or organizations that

constitute the system should also be responsible

for allocating services and funding for services,

and whether those agencies or organizations

should be designated by the Federal Government or by the States.

In the abstract, the development of an effective system to link people with dementia to

services seems far removed from the terrible

personal losses associated with dementia for

patients and their families. The need for such a

system comes alive, however, for people who

try to find appropriate services for a relative,

friend, or client with dementia and confront the

existing lack of accurate information about

services and about funding for services and the

often bewildering array of public and private

agencies, individuals, funding sources, eligibility criteria, rules, and regulations that constitute

the service environment in many communities.

Although the need for an effective linking

system is clear, establishing such a system will

be difficult, in part because of “turf issues. ”

Many public and private agencies, organizations, individual health care and social service

professionals, service providers, and others

currently link some people with dementia to

services and consider this function as part of

their role. Designating certain agencies, organizations, or professional or provider groups to

constitute a system to link people with dementia

to services will engender resentment and resistance from the agencies, organizations, and

professional and provider groups that are not

chosen. One alternative is to designate a consortium of agencies and organizations to constitute

the linking system in each community, but the

process of creating and maintaining an effective

consortium is not without its own difficulties.

Given these obstacles, some people might argue

that it is best not to try to establish an effective

linking system. On the other hand, without such

a system, some, and probably many, people with

dementia will not be connected to appropriate

services, and families and other informal caregivers, who already must bear the physical and

emotional demands of caregiving, will continue

to experience the frustration of not being able to

obtain accurate information and assistance in

locating and arranging services.

Overview of the Problem

Diseases that cause dementia destroy a person’s ability to understand events and people in

his or her environment and to plan for and take

care of himself or herself. Alzheimer’s disease

and many other diseases that cause dementia are

progressive, so that over time the affected

individual becomes less able to function independently and more dependent on others for

care. Eventually, many people with dementia

become so debilitated that they require total

care, 24 hours a day, for the rest of their lives.

As a dementia patient’s condition worsens,

his or her family and friends are faced with

severe emotional losses—loss of the person they

knew and meaningful aspects of the relationship

they had with that person. They are faced

simultaneously with the person’s need for

supervision, physical care, and many other

kinds of assistance to compensate for his or her

lost abilities. Because people with dementia

often live for many years after the onset of

symptoms, the family’s experience of emotional

loss and the patient’s need for care are frequently prolonged.
Chapter l-Summary and Overview ● 5

Photo credit: Suzie Fitzhugh

Alzheimer’s disease and many other dementing diseases destroy a person’s ability to plan for and take care of herself or himself.

As a dementia patient’s condition worsens, the person must depend increasingly on her or his family or friends for supervision,

physical care, and many other kinds of assistance to compensate for her or his lost abilities.

People with dementia who have no family or

friends face alone their loss of memory and other

cognitive functions and their decreasing ability

to care for themselves independently. Although

they manage on their own for a while, eventually

they also need 24-hour care and supervision.

Some diseases that cause dementia are reversible with available treatments, but most are not.

A careful medical evaluation can identify reversible dementias and indicate appropriate

treatment, but there is no known cure for

Alzheimer’s disease or many of the other

diseases that cause dementia. OTA’s 1987

report stressed the importance of biomedical

research to find ways to prevent or cure those

diseases. That report concluded that such solutions are not likely in the near future. Until

effective methods of prevention or cure are

discovered, ways must be found to take care of

people who suffer from the diseases.

Formal services, including medical, nursing,

and social services; adult day care; in-home,
6 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

nursing home, and respite care; and legal and

financial counseling, can lessen the physical and

financial burden for families and others who are

taking care of people with irreversible dementia.

l Good formal services-those that are

appropriate to the needs of the person and his or

her caregivers—also may mitigate the potentially devastating emotional impact of dementia

on the family, support the patient’s remaining

abilities, and perhaps lessen the patient’s anxiety and suffering.

As awareness of Alzheimer’s disease and

other diseases that cause dementia has increased

in the past few years, appropriate services have

been developed in many communities. Such

services are not available everywhere, however,

and more services are needed in most communities. Where appropriate services are available,

they are often expensive, especially when they

are needed for prolonged periods. Public funding and private insurance coverage for them

frequently are inadequate.

Even if appropriate services are available and

affordable or reimbursable through public programs or private insurance, families and others

still may not be able to find them. This problem

is, in part, due to the complexity and fragmentation of services at the community level. In many

communities, health care, long-term care, social, and other services for people with dementia

(and for people with other chronic conditions)

are provided by numerous public and private

agencies and individuals. The services are not

coordinated, and the providers have different

rules about whom they serve and what they

offer. Public funding is available for some

services through Federal, State, or local programs, but each program has complex regulations about who is eligible, what services are

covered, who provides them, for how long, and

in which settings. Since there is seldom any

information about the quality of services provided by different agencies and individuals,

families and others often have no basis for

selecting one over another. Many families and

others suffer, as a result. According to the

Alzheimer’s Association:

A recurring theme in the history of each

family’s problems is the difficulty experienced

in finding both medical and social resources for

the diagnosis, management, and, particularly,

the care of the patient whose mind and body are

failing (16).

Physicians, other health care and social service professionals, service providers, and others

refer some patients and their families to services

and sometimes arrange services for them. Many

public and private agencies and organizations

provide information and referrals and case

management to help people find services. The

assistance provided by those individuals, agencies, and organizations meets the needs of some

people with dementia and their families, but

other patients and families do not get any

assistance in locating and arranging services.

Some families contact one agency after another

in a haphazard, lengthy search for needed

services. That process adds to the frustration of

families who are already coping with the

emotional losses associated with dementia and

with the patient’s need for physical care and

supervision. In the end, some patients do not

receive any services, and some receive services

that are not appropriate for their needs.

For families and other informal caregivers,

the problem of locating and arranging services

is only one of the difficult aspects of caring for

a person with dementia. Likewise, from a public

policy perspective, the problem of locating and

arranging services is only one of the problems

that restrict access to appropriate services for

people with dementia. Four other problems that

restrict access to appropriate services are:

● the lack of sufficient services,

. the lack of adequate funding for services,

. the lack of education and training for

service providers, and

. the poor quality of some services.

IS= ~ble 1-2 hter in this chapter for a list of the services that maybe needed for people witi dementia.
Chapter l-Summary and Overview . 7

The focus in this report on the problem of

locating and arranging services is not intended

to detract from the importance of the other four

problems, all of which were discussed at length

in OTA’s 1987 report (831). Ideally, through the

combined efforts of public and private agencies

and organizations, high quality services provided by well-trained individuals and adequate

funding for services would be available to all

people with dementia. That outcome is unlikely,

however, at least in the near future.

Moreover, even if the other four problems

were solved, the lack of effective methods of

locating and arranging services would continue

to restrict some people’s access to appropriate

services. Evidence discussed later in this report

indicates that high quality services may not

always be used, even when funding is available.

Some patients and families do not know about

the services. Other patients and families may

need help in defining their needs, understanding

how the available services can help, and arranging services. Even if high quality services were

available everywhere, the problem of access

would not necessarily be solved for those

people.

In addition, an effective system to link people

with dementia to services might help to resolve

some of the other problems that restrict access.

For example, precise information about service

gaps often is a crucial factor in political and

administrative decisions to establish or fund

new services. If agencies that link people with

dementia to services kept accurate records of the

services that are needed but not available in their

communities, that information might be used by

policymakers to establish or fund new services.

A system to link people with dementia to

services might also play a role in improving

quality of care. OTA’s research indicates that

most agencies that help people find services do

not have formal procedures to evaluate the

quality of services to which they refer people,

but some agencies do have such procedures (see

ch. 5). It is reasonable to expect that if agencies

gave their clients information about the quality

of available services or referred them only to

service providers who met certain standards,

over time providers would try to meet the

standards, and quality of care would improve

generally. This report considers whether a

linking system should concern itself with the

quality of services to which it refers people, and

if so, how.

The relationship between a linking system

and funding for services is problematic. Many

agencies that link people to services also help

them find sources of funding for services. Public

and private funding for services are not adequate, however. In 1988, 1989, and 1990,

several bills were introduced in Congress to

expand Federal funding for a variety of longterm care services. Provisions in most of the

bills indicate that the agencies designated to

administer the new benefits also would link

people to services. Although the expanded

funding for services proposed in the bills would

benefit many people with dementia, it is not

clear that the linking process proposed in the

bills would meet their needs. In addition, some

members of the advisory panel for this OTA

study and other commentators are opposed to

having the same agencies link people to services

and administer or control funding for services.

They fear that agencies that control funding for

services may restrict, rather than facilitate,

clients’ access to needed services in order to

limit the cost of the services to the agency. Both

those concerns are discussed later in this chapter.

The issues of locating and arranging services,

service availability, funding, provider education

and training, and quality of care are interrelated.

Some people might argue that one of the other

issues is more important than locating and

arranging services, and that limited public funds

should be spent to create services, increase

funding for services, support provider education

and training, or improve quality rather than to

develop an effective linking system. Clearly,

however, better methods of linking people with

dementia to services are necessary to ensure that

they have access to appropriate care.
8 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Congressional Interest

In recent years, with growing public awareness of and concern about Alzheimer’s disease

and other diseases that cause dementia, Congress responded first by funding biomedical

research. Federal funding for biomedical research on Alzheimer’s disease increased from

less than $4 million in fiscal year 1976 to more

than $140 million in fiscal year 1990. Federal

funding for health services research also has

increased, although much more slowly.

Legislation to improve access to services is

just beginning. In 1987, the reauthorization of

the Older Americans Act (Public Law 100-175)

included new in-home services for frail, elderly

people and specifically designated people with

Alzheimer’s disease and related disorders as

eligible for the services. Each of the bills

introduced in Congress in 1988, 1989, and 1990

to expand Federal funding for long-term care

services defined eligibility for the services

explicitly to include people with dementia. Most

congressional attention has focused thus far on

the issues of service availability and funding for

services, however. Less attention has been paid

to the question of how to link people with

dementia to the services they need.

The topic of this report spans many Federal

programs and crosses the jurisdictional lines of

several congressional committees. The study

was requested by the Senate Committee on

Labor and Human Resources, Senator Charles

E. Grassley, the House Committee on Energy

and Commerce, and the House Select Committee on Aging. OTA received letters of support

for the study from the Senate Special Committee

on Aging; Senator Frank H. Murkowski, ranking minority member of the Senate Committee

on Veterans’ Affairs; the House Committee on

Veterans’ Affairs; and Congresswoman Olympia J. Snowe.

The primary concerns of the requesting committees and individual members of Congress

were to improve access to appropriate services

for people with dementia and to support family

caregivers. The committees were particularly

concerned about access problems in the Federal

programs over which they have jurisdiction—

i.e., Medicare, Medicaid, Older Americans Act

programs, and programs of the U.S. Department

of Veterans Affairs. The requesters were also

concerned about the complexity and fragmentation of services and the competing claims of

different agencies and professional groups that

each of them should be the designated case

manager. The requesting committees asked OTA

to identify methods of locating and arranging

services that are successful in some localities

and might serve as models for other localities.

The requesters agreed that a publicly funded

system to link people with dementia to services

should support the efforts of private groups, not

supplant them, and several requesters stressed

the need to evaluate the role of voluntary

organizations in the service delivery system.

Locating Services for Mrs. D:

A Case Example

The true story of one family’s efforts to locate

and arrange services for a relative with dementia

(Mrs. D) is related in box l-A. The process of

finding services is different in every case: each

person is different; some people with dementia

do not have a family or other informal caregiver;

families vary; and the number and type of

service providers and the availability of public

and private funding for services differ in every

locality. Nevertheless, the experience of Mrs. D

and her family contains some common themes

and illustrates the impact on people of the

fragmentation of services at the community

level and the lack of an effective system. The

story covers only a l-month period. Many

families of people with dementia experience

similar problems for years.

Mrs. D has several advantages that many

people with dementia do not have. She is not

poor; she has a supportive family; and there are

a substantial number of service providers and

some public and private funding for services

available to her. Despite those advantages,

locating and arranging services for Mrs. D

proved to be a difficult, frustrating process.
Chapter 1--Summary and Overview ● 9

Box 1-A—Locating Services for Mrs. D

On February 29,1988, Mrs. D, a 70-year-old widow, was hospitalized as a result of convulsions. She had been

living alone in an apartment below the apartment of one of her three sons. The family knew that she was becoming

confused, but when it turned out that the convulsions occurred because she mistakenly took too much of a prescribed

diuretic medicine, they realized that she needed more supervision and assistance than she had been getting.

One son who lives 300 miles away took leave from work, and he and his two brothers and their wives who

live in the area began to work together on a plan for Mrs. D. Their father had died the year before, after 8 years in

a nursing home, and they were determined to arrange care for her at home.

On March 4th, while Mrs. D was still in the hospital, the hospital discharge planner gave the family a list of

eight home care agencies in the area and suggested that they contact the local Medicaid office to determine whether

Medicaid would pay for Mrs. D’s home care.

One son called all the home care agencies. He was asked repeatedly whether he wanted a “homemaker” or

a ‘‘home health aide. ” When he inquired about the difference, he was told that a homemaker was cheaper than a

home health aide, One agency said that homemakers do not touch the patient, whereas home health aides do. Other

agencies said this distinction was not true of their homemakers and home health aides, but they did not offer a better

explanation of the difference between homemakers and home health aides.

The home care agencies quoted prices ranging from $7 to $12 an hour. Since Mrs. D needed supervision for

as many as 16 hours a day, the cost could be$112 to $192 a day. Several agencies said they did not think Medicaid

would pay for home care for her. Moreover, most of the agencies said that because of staff shortages, they could

only ‘‘try to find someone. ” The family finally chose the nonprofit home care agency, partly because it had the

lowest prices. Arrangements were made for a home visit.

One son contacted the Medicaid agency and was told that Medicaid might pay for a homemaker for up to 10

hours a day, 7 days a week. First, however, various procedures were needed to determine whether Mrs. D’s physical

condition and functioning were sufficiently impaired to meet Medicaid requirements for home care and whether she

was financially eligible for Medicaid. Her income was slightly above the State Medicaid limit, but as her sons

understood it, if she used part of her income to pay for some home care services, Medicaid might cover the rest.

On March 8th, the hospital called to say that Mrs. D was to be discharged that day. The family had expected

she would be in the hospital at least 4 more days. One son called the doctor, who first said that Medicare would not

pay for any more days in the hospital and that they had to take Mrs. D home immediately. The son argued that she

had to stay at least 3 more days. Finally they agreed that she would be discharged in 2 days.

In the meantime, one son called the county Office on Aging, an agency that serves as the local area agency

on aging (AAA) and as such is federally mandated to ensure the availability of information and referral for elderly

people. He was asked whether Mrs. D needed‘‘weatherization assistance” or food stamps. When the answer was

no to both questions, he was told that the Office on Aging could not help.

The family continued to call every agency they heard about. They were repeatedly referred to the Office on

Aging, and they called back once. That time, they got a completely different response, but again a response that was

irrelevant to Mrs. D’s situation.

Thus far, the family had not been given a diagnosis for Mrs. D’s confusion. Her primary physician had said:

‘‘You know, it happens to all old people. She may improve. ” One son was convinced that she had an irreversible,

dementing disease, but the other two sons accepted the doctor’s hopeful suggestion that she might improve. As the

difficulty of arranging home care and the potential cost of the services became clearer to the family, the three sons

argued with each other about whether the services were really needed and, if so, for how long.

At a certain point, someone (the family can’t remember who it was) suggested that they call the local senior

center. The woman who answered the phone at the senior center said that the person they needed to talk to was out

sick, and they would have to call back. She added however, that her mother had Alzheimer’s disease and that she

knew of three adult day centers in the area that provided good care for people with dementia. She gave the family

the name and telephone number of the one she thought was best.

(continued on next page)
10 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 1-A—Locating Services for Mrs. D-(continued)

Mrs. D’s family had not considered adult day care for her and did not know much about it, but one son called.

He talked to the director of recreation and volunteer programs who gave the impression immediat ely that he

understood the problem, knew about dementia, and might be able to help. The son arranged to visit the day center

and called the hospital to have Mrs. D’s records sent there so the center could decide whether to accept her.

On March 10th, Mrs. D came home even though the arrangements for her care had not been settled. Her sons

continued calling service providers. They found it was difficult to supervise and care for her and at the same time

make calls to arrange services. In the next 2 days, eight different people came out to evaluate Mrs. D. Some came

from the home care agency, and some came from the Medicaid agency. The sons did not understand exactly who

any of these people were or how they related to each other.

Mrs. D was very confused. She did not always recognize her son from out of town, who was staying with her.

Frequently she got angry at him and at her daughter-in-law who lived in the apartment above her (whom she referred

to as “that government lady upstairs”) because they would not let her cook and do other things she wanted She

liked all the “visitors” who came to evaluate her. Once she was home, it was clear to everyone that she should not

be left alone. Some family members began to wonder whether home care was even possible.

On March 12th, the son from out of town went home. The plan was that starting the next Monday, a home health

aide paid by Medicaid would stay with Mrs. D seven days a week from 9:00 a.m. to 3:00 p.m. The family had hired

another aide who would work from 3:00 to 9:00 p.m. and would be paid from Mrs. D’s income. The son and

daughter-in-law in the apartment upstairs would watch out for her at night. An application for adult day care was

pending.

On March 14th, the first aide did not show up. It turned out she had quit the agency the previous Friday. The

aide the family had hired privately came on time and worked out well. The next day an aide from the agency also

came on time. The rest of that week went O.K. Mrs. D ‘‘fired’ both aides frequently. The agency aide went to the

daughter-in-law upstairs, who reassured her that Mrs. D needed help and told her that she should stay. The aide

whom the family had hired turned out to be an easy going person with a lot of common sense; she didn’t need to

ask whether she should stay.

At the end of the week, the adult day center said that Mrs. D could come there, 5 days a week, starting in 10

days. The aide from the agency misunderstood, thought the plan was starting sooner, and did not show up for work

the next Monday, leaving Mrs. D alone. In the meantime, one of Mrs. D’s sons hired a college student to come in

from 6:30 a.m. to 8:30 a.m., three mornings a week, because he was afraid that she was not safe alone then.

The adult day center has a grant for some of its costs, and clients are not required to pay a fee, but they are

encouraged to ‘‘contribute. ’ Mrs. D’s family was told that her “contribution” would be $15 a day.

The center could not provide transportation for Mrs. D. They have plans to purchase a bus in the future to pick

up clients, but they do not expect to pick people up from as far away as Mrs. D’s apartment. Medicaid can pay for

transportation to the doctor and the hospital but not to the adult day center because, according to Medicaid

regulations, it is a "social day center," Medicaid could pay for transportation to a center that it defined as a "medical

day center. ” Mrs. D’s family pointed out to the Medicaid case worker that Medicaid was paying the home care

agency $11 an hour for an aide from 9:00 a.m. to 3:00 p.m. (although the aide got only $4.50) and that the adult

day care would cost Medicaid nothing. The worker said that Medicaid’s regulations on “social day centers” and

‘‘medical day centers’ were firm and that no exception could be made in this case.

Luckily, the aide that the family was paying privately said she would come every morning, get Mrs. D ready,

take her to day care, and bring her home again in the afternoon, The family was paying her $7 an hour. Medicaid

agreed to pay for another aide for 10 hours a day on weekends.

As of March 25th, the family was confident that the adult day center would provide good care. Since it is

affiliated with a nursing home, they believed that she had “one foot in the door there” if she eventually needed

nursing home care. They hoped the private aide they found would stick with the job. They were worried about Mrs.

D at night, and for a few days they worried about what to do if she refused to go to the adult day center. Then they

decided that she just didn’t have that choice.

SOURCE: Office of Technology Assessment, 1990.
Chapter 1--Summary and Overview ● 11

FACTORS THAT DETERMINE

THE KIND OF SYSTEM THAT

IS NEEDED TO LINK PEOPLE

WITH DEMENTIA TO SERVICES

In addressing the question of how to link

people with dementia to appropriate services,

OTA made no assumptions about what kind of

system would be needed. By system, in this

context, OTA means a group of interacting

agencies and/or organizations that form a network that serves the common purpose of linking

people with dementia to services. The system

does not necessarily have to be federally administered, nor does it have to be implemented by a

single category of agencies nationwide.

OTA’s staff and the advisory panel for the

study considered many possible systems, ranging from a relatively simple telephone information and referral system that would refer families

and others to needed services to a comprehensive service system that would not only locate

and arrange but also provide and pay for many

of the services a person with dementia might

need. The staff and advisory panel also considered whether the system-of whatever kind—

should serve people with dementia exclusively

or people with dementia and people with other

diseases and conditions as well.

OTA concluded that three factors determine

the kind of system that is needed to link people

with dementia to services:

●

●

●

the characteristics and service needs of

people with dementia;

the characteristics of their families or other

informal caregivers (if they have any); and

the characteristics of the service environment, including the number and type of

agencies and individuals that provide services in a community and the sources of

public and private funding for services.

The following discussion presents some general information about dementia and about each

of the three factors that is relevant to determining what kind of system is needed to link people

with dementia to services. Although the discussion identifies some common characteristics of

patients, families, and service environments, it

gives equal emphasis to their heterogeneity,

since an effective system to link people with

dementia to services must be responsive to their

diverse needs and situations.

Characteristics and Care Needs

of People With Dementia

On the basis of a 1985 review of epidemiologic studies, OTA estimates that there are now

about 1.8 million Americans who have severe

dementia: that is, they are so incapacitated that

others must care for them continually (152).

OTA estimates that an additional 1 million to 5

million Americans have mild or moderate dementia.

The prevalence of dementia increases with

age. The 1985 review of epidemiologic studies

found that the prevalence of severe dementia

increases from less than 1 percent of people

under age 65, to about 1 percent of those age 65

to 74, 7 percent of those age 75 to 84, and 25

percent of those over age 85 (152). Because of

the aging of the U.S. population, the number of

people with dementia will increase dramatically

in coming decades.

Diseases That Cause Dementia

Dementia is a clinical syndrome characterized by the decline of mental functions in an

alert individual. It can be caused by more than

70 diseases and conditions, including the following:

progressive degenerative diseases, including those in which dementia is inevitable,

such as Alzheimer’s disease and Pick’s

disease, and those in which dementia may

or may not occur, such as amyotrophic

lateral sclerosis (ALS) and Parkinson’s and

Huntington’s diseases;

cardiovascular diseases that decrease blood

supply to the brain: this can cause loss of

brain tissue in the form of many small

strokes (multi-infarct dementia) or one or

more large strokes; bleeding into the brain,
12 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

usually related to hypertension, can also

cause loss of brain tissue;

severe depression;

intoxication caused by prescription and

nonprescription drugs and alcohol;

infections that affect the brain, including

Creutzfeldt-Jakob Disease and acquired

immunodeficiency syndrome (AIDS);

metabolic disorders;

nutritional disorders;

normal pressure hydrocephalus; and

space-occupying lesions, such as brain

tumors and subdural hematoma (847).

Alzheimer’s disease is by far the most common cause of dementia. A study of noninstitutionalized individuals over age 65 in East

Boston, Massachusetts, found that 91 percent of

the individuals who had moderate or severe

dementia had Alzheimer’s disease, including 84

percent who had only Alzheimer’s disease and

7 percent who had Alzheimer’s disease plus

another dementing illness (192).2 Less than 5

percent had dementia caused by cardiovascular

disease. The extent to which these findings from

the East Boston study can be extrapolated to the

population as a whole is unclear. Prior to the

release of the findings from East Boston, other

researchers had estimated that Alzheimer’s

disease accounted for only 50 to 60 percent of all

cases of dementia, and that cardiovascular

diseases accounted for 10 to 20 percent of all

cases of dementia (399,794). Many researchers

and clinicians have noted that Alzheimer’s and

other diseases that cause dementia coexist in

some people (399,554,704,794).

Dementia in people with AIDS has received

considerable attention from researchers, clinicians, and the media. Although prevalence

estimates vary, researchers agree that most

AIDS patients develop dementia at some time in

the course of their illness (590,654). People with

AIDS dementia face many of the same problems

in locating appropriate services as people with

other dementing diseases and some additional

problems as well. This report does not address

the difficult problems in locating services that

confront AIDS patients specifically.

This report’s main focus is on problems in

locating and arranging services for people with

Alzheimer’s disease and other dementing diseases that primarily affect elderly people. Accurate identification of the disease that is causing

dementia in an individual often is difficult,

however. In Alzheimer’s and some other dementing diseases, a diagnosis can only be

confirmed with certainty by an autopsy after the

patient’s death (847). Diagnostic accuracy for

Alzheimer’s disease (confirmed by autopsy)

approaches 90 percent in some specialized

centers but is lower in other settings (226,400,831).

Because of the lack of certainty about diagnosis

in many cases, this report uses the generic

phrase “people with dementia” except in describing research or programs that target people

with a specific disease—usually Alzheimer’s.

Cognitive and Self-Care Deficits

By definition, dementia involves some degree

of memory loss. Other cognitive abilities frequently diminished or lost in dementia include

intelligence, learning ability, problem solving,

judgment, comprehension, attention, and orientation to time and place and to oneself. Language abilities, including the ability to express

oneself meaningfully and to understand what

others communicate, usually also are affected.

Researchers and clinicians have described a

general progression of cognitive losses that

typifies Alzheimer’s disease and other primary

degenerative dementias (339,51 1,710,711). It is

important to note, however, that individuals

with primary degenerative dementias vary in the

ZW Smdy in wt Boston iI.NOIVd admini5tel-ing a brief memo~ test to 3,623 noninstitutionalkxl individuals over age 65 and then providing a

comprehensive evaluation for 467 of those individuals, including 170 individuals who had performed well on the brief memory test 101 individuals

who had performed at an intermediate level on the test, and 196 individuals who had performed poorly on the test (192). Based on an analysis of the

results of the comprehensive evaluations, the researchers concluded that at least 10.3 percent of all people overage 65 have Alzheimer’s disease, including

3 percent of those age 65 to 74, 18.7 percent of those age 75 to 84, and 47.2 percent of those over age 85. Extrapolating to the population as a whole,

these figures suggest that them are now about 4 mi~on people with Alzheimer’s disease in the United States. The prevalence of severe, moderate, and

mild dementia due to Alxheimer’s disease cannot be ascertained from the East Boston data.
Chapter 1 Summary and Overview ● 13

rate and order in which cognitive losses occur

(62,77). Individuals with multi-infarct and other

dementing diseases also vary in the type,

progression, and ultimate seventy of their cognitive losses. Because of these variations and

because, at any one time, individuals with

dementia are at different points in their disease,

people to be served by a linking system will

differ greatly in the type and overall severity of

their cognitive deficits.

People with dementia also differ in their

self-care abilities. Variations in self-care abilities reflect, in part, the type and severity of

individuals’ cognitive deficits, their remaining

cognitive abilities, and coexisting physical or

emotional conditions. Cognitive deficits due to

dementia often limit a person’s ability to perform activities such as shopping, cleaning,

cooking, using a telephone, and handling money,

which are often referred to as ‘‘instrumental

activities of daily living” (IADLs). As the

person’s cognitive deficits increase, the person

also may become unable to independently

perform personal care activities, such as bathing, dressing, or using the toilet, which are often

called “activities of daily living” (ADLs). The

person may forget how to perform any of the

activities or even that they are necessary. Many

dementing diseases cause neurological changes

that create movement and gait disorders, swallowing disorders, speech impairments, and similar conditions that also limit a person’s self-care

abilities. Variations in self-care abilities also

relate to environmental factors; for example,

some people with dementia can perform certain

activities in a familiar environment but not an

unfamiliar one. Thus, the individuals to be

served by a linking system will vary in the type

and overall severity of their self-care deficits.

Self-care deficits generally increase as the

severity of a person’s cognitive deficits increase

(217,293,787), but the correlation between the

two is not exact. Some people with significant

cognitive deficits are independent in self-care

activities, and others with mild cognitive deficits have significant self-care deficits (760,895,

913).

Psychiatric and Behavioral Problems

Depression and other psychiatric and behavioral problems are common in people with

dementia. Depression can cause dementia or

co-exist with another dementing disorder. Differential diagnosis is difficult in such cases, but

research indicates that one-fifth to one-third of

people with Alzheimer’s or another dementing

disease have coexisting depression (695,704,

705).

Depression in people with dementia generally

responds well to treatment (usually antidepressant medications) (444,512,682,705). If a person’s cognitive deficit is due only to depression,

his or her normal cognitive status may be

restored with treatment. If the depression coexists with another dementing disorder, treatment usually does not improve the person’s

cognitive status. Often, however, it improves the

person’s mood and functioning-important considerations from the point of view of families

and other caregivers (680,697).

Other psychiatric disorders that occur in some

people with dementia are:

●

●

●

●

suspiciousness and paranoia, identified in

one-fourth to one-half of people with

Alzheimer’s disease (295,429,525,681,728,

787);

visual and auditory hallucinations, found in

at least one-fourth of people with Alzheimer’s and other dementing diseases

(242,525,681,728,787);

withdrawal and reduced emotional responsiveness, found in three-quarters of the

people with Alzheimer’s disease in one

study (729); and

agitation and restlessness, found in 24 to 89

percent of people with dementia, depending on the study (242,479,729,787).

Behavioral problems that occur in some

people with dementia are wandering, hitting,

severe emotional outbursts, and disruptiveness

at night (295,479,681). Not all people with

dementia have behavioral problems, but when

such problems occur, they often cause anxiety,
14 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

embarrassment, fear, anger, and exhaustion for

families and other caregivers. Even if the

disease that causes a person’s dementia cannot

be cured, psychiatric disorders and behavioral

problems associated with it usually can be

alleviated with changes in the person’s daily

activities, modifications to his or her environment, training for caregivers in how to respond,

medications, and in some cases, counseling and

relaxation therapies for the patient.

Coexisting Medical Conditions

Many people with dementia have other medical conditions unrelated or only peripherally

related to their dementing disease (71,21 1,479,

921). A random sample of people with dementia

served by a community mental health center in

Washington State, found, for example, that they

had an average of more than three co-existing

medical conditions. A third or more of the

people had cardiac or vascular conditions,

arthritis, and/or visual or hearing impairments

(see table l-l). Any coexisting medical condition can exacerbate a dementia patient’s cognitive and self-care deficits and complicate his or

her care. Conversely, treatment of the condition

can maintain or restore the person’s physical

health and maximize his or her functioning

(74,487,680,908,915).

People With Dementia Who Live Alone

Most studies of people with dementia show

that virtually all such people live either in the

community with someone else or in a nursing

home or other residential care facility (see, for

example, Friss, 1989 (235); George, 1983 (242);

Lusky et al., 1988 (479)). At the start of this

assessment, OTA assumed that very few people

with dementia were living alone and that those

few probably were not severely cognitively

impaired. OTA also assumed that a linking

system would interact primarily with family

members and other informal caregivers and

should be designed to respond to their needs.

Table 1-1--Coexisting Medical Conditions in 100

People With Dementia Served by the Community

Mental Health Center in Spokane, Washington, 1988

Percent of people

Illness/Condition affected

Cardiac . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Vascular . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Hypertension . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Stroke . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Arthritis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Vision impairment. . . . . . . . . . . . . . . . . . . . . . . . . . .

Cataracts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Glaucoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Hearing impairment . . . . . . . . . . . . . . . . . . . . . . . . . .

Speech impairment . . . . . . . . . . . . . . . . . . . . . . . . . .

Stomach ulcer . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Chronic obstructive pulmonary disease . . . . . . . . .

Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Diabetes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Hernia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Parkinson’s disease . . . . . . . . . . . . . . . . . . . . . . . . .

Seizures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Osteoporosis/kyphosis. . . . . . . . . . . . . . . . . . . . . . .

Urinary tract infection . . . . . . . . . . . . . . . . . . . . . . . .

Thyroid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Prostate . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Diverticulitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

All others . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

None . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Unknown . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

40%

31

34

26

37

50

30

10

34

19

14

12

11

11

10

9

9

8

8

5

5

5

12

7

2

SOURCE: R. Raschko, director, Elderly Services, Spokane Community

Mental Health Center, Spokane, WA, letter to the Office of

Technology Assessment, U.S. Congress, Washington, DO,

Mar. 8, 1988.

All those assumptions were wrong. The

studies that show very small proportions of

people with dementia living alone are based on

interviews with family members and other

informal caregivers. OTA’s review of populationbased studies and studies that focus on patients

rather than caregivers shows that at least 20

percent of people with dementia live alone and

that some of them are severely impaired. The

Epidemiologic Catchment Area (ECA) Survey,

a large-scale, population-based study conducted

in five sites in the early 1980s, found that 24

percent of people with severe cognitive impairment were living alone.3 The proportion varied

considerably among sites, from 15 percent in

New Haven, Connecticut to 44 percent in

Durham, North Carolina (842). Twenty-one

percent of people with dementia who were seen

at the six California Alzheimer’s Disease DiagSsmme co~tive ~~ent Ww defm~ in tie smey as a score of 17 or less on the Mini-Mental State~. tion (218). By tbat deftitio~ the

prevalence of severe cognitive impairment at the five sites averaged 1.3 percent in people over age 18 (range: 1.2 to 3.3 percent) (842).
Chapter 1-Summary and Overview . 15

nostic and Treatment Centers in 1985, 1986, and

1987 lived alone (225,227). Among people

served by the National Channeling Demonstration Project, 24 percent of those with severe

dementia and 33 percent of those with moderate

dementia lived alone (149).

Except for anecdotes, very little information

is available about people with dementia who live

alone. Data on 100 people with dementia who

were receiving services from a community

mental health center in Washington State in

1989, show that those who lived alone were

somewhat less functionally impaired than those

who lived with a caregiver: 80 percent of those

who lived alone had limitations in ADLs,

compared to 96 percent of those who lived with

a caregiver. However, those who lived alone

were older; their income was lower; and they

had been receiving services from the community

mental health center for a longer period (687).

No data are available to compare the mental

status of people in the two groups.

The large proportion of people with dementia

who live alone is surprising. Some people with

dementia who live alone have someone to help

them—an important consideration with respect

to both their service needs and the kind of

system that is needed to link them to services.

Among the 100 people with dementia who were

receiving services from the community mental

health center in Washington State, half of those

who lived alone had an involved relative or

friend (687). Extrapolating from those data and

OTA’s estimate that at least 20 percent of people

with dementia live alone, one could hypothesize

that at least 10 percent of all people with

dementia live alone and have no one to help

them. Some support for that hypothesis comes

from data on people with dementia seen at the

six California Alzheimer’s Disease Diagnostic

and Treatment Centers in 1987, 10 percent of

whom had no relative or friend to help them

(227). OTA is not aware of any other sources of

data on this issue.

Service Needs of People With Dementia

Because of their cognitive and self-care

deficits and psychiatric and behavioral problems

(if any) people with dementia generally need

supervision and assistance with many different

kinds of activities. Families, friends, and others

usually provide this care informally, but they

cannot always provide all the assistance the

person needs, and some people with dementia

do not have anyone to care for them informally.

People with dementia also need professional and

specialized services that informal caregivers

generally cannot provide.

Table 1-2 lists the many different kinds of

services that may be needed for people with

dementia and their families or other informal

caregivers. Not all the services are needed for

any one patient. Patients’ and caregivers’ needs

change over time, however, and individual

patients may need many of the services sometime in the course of their illness.

All the services listed in table 1-2 also are

used for nondemented people with physical

impairments. The cognitive deficits of people

with dementia alter the nature of the services

they need, however. Providing medical care,

legal services, personal care, or other services

for a demented person is quite different from

providing the same services for a nondemented

person, in part because the demented person

often is unable to understand or cooperate with

the provider. For that reason, even vision and

dental care may be different for demented

people. Various providers also differ in their

knowledge about dementia and are more or less

skilled in working with people with dementia.

Implications for an Effective System To Link

People With Dementia to Services

Because of their diverse service needs, an

effective system to link people with dementia to

services must be able to refer them to many

different kinds of health care, long-term care,

social, and other services—ideally, to all the

services listed in table 1-2—provided those

services are available in the person’s commu-
16 ● confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

*

Table 1-2-Services That May Be Needed for People

With Dementia and Their Families

Most of these services maybe needed by and can

be provided for patients who are living at home, in a

nursing home, or in another residential care facility,

such as a board and care facility, adult foster home,

or sheltered housing.

Diagnosis

Acute medical care

Ongoing medical supervision

Treatment of coexisting

medical conditions

Medication and elimination of

drugs that cause

excess disability

Multidimensional assessment

Skilled nursing

Physical therapy

Occupational therapy

Speech therapy

Adult day care

Respite Carea

Family/caregiver education

and training

Family/caregiver counseling

Family support groups

Patient counseling

Legal services

Financial/benefits counseling

Mental health services

Protective services

Supervision

Home health aide

Homemaker

Personal care

Paid companion/sitter

Shopping

Home-delivered meals

Chore services

Telephone reassurance

Personal emergency response

system

Recreation/exercise

Transportation

Escort service

Special equipment (ramps,

hospital bed, geri-chair, etc.)

Vision care

Audiology

Dental care

Nutrition counseling

Hospice

Autopsy

aRespite care includes any service intended to provide temporary relief for

the primary caregiver. When used for that purpose, homemaker, paid

companion/sitter, adult day care, temporary nursing home care, and other

services included on the list constitute respite care.

SOURCE: Office of Technology Assessment, 1990.

nity. A linking system also should be able to

refer people with dementia to service providers

who are knowledgeable about dementia and

skilled in working with people with dementia,

again, provided there are such providers in the

community. As noted earlier, many people with

dementia have co-existing medical conditions

unrelated or only peripherally related to their

dementia. Since it is the whole person—not just

his or her dementia—that is linked to services,

the system should be able to refer patients to

services or sources of information about services for co-existing medical conditions as well.

Certain services are needed early in the course

of a patient’s illness. An accurate diagnosis

should be obtained as early as possible, both to

identify reversible dementias and to let patients,

families, and others know what is causing the

person’s cognitive and self-care deficits and

psychiatric and behavioral problems, if any.

Legal services also are needed early in the

course of progressive dementing diseases, while

patients still are able to make decisions about

their property and future care and to execute

legal documents (e.g., wills, trusts, durable

powers of attorney, and living wills) that express

their wishes on these matters. A linking system

should be able to inform people with dementia,

their families, and others about the importance

of accurate diagnosis and early legal counseling.

To do so, the system has to be in contact with

them early in the course of the patient’s disease.

Families and others often are not aware that

the psychiatric and behavioral problems associated with dementia may be treatable, even if the

underlying disease that causes the dementia

cannot be cured. Likewise, they may not be

aware of the impact of treatable coexisting

medical conditions on the person’s cognitive

and self-care abilities. A linking system should

take an active role in informing people that those

problems and conditions may be treatable and

should encourage them to seek appropriate

treatment.

Dementia patients’ characteristics affect not

only the kinds of services to which a linking

system must be able to refer them and the timing

of the referrals but also many aspects of the

linking process itself. Patients’ cognitive deficits complicate the linking process, making it

more difficult to connect demented than nondemented people to services. For example, people

with dementia are far less likely than nondemented elderly and disabled people to refer

themselves for services. People with dementia

often are unaware of their own limitations and

do not realize they need services. They are

unlikely to be able to arrange or participate in

arranging services for themselves, to remember

service arrangements that have been made for

them, or to remember and report problems with

the services they receive (934).

People with dementia who live alone present

a difficult challenge to anyone trying to locate

and arrange services for them. Case managers

interviewed for this OTA study said that such
Chapter l-Summary and Overview ● 17

Photo credit: Eastern Area Agency on Aging

A linking system must be available to people with dementia

and their families early in the course of the patient’s

disease to inform them about the importance of

obtaining an accurate diagnosis and early

legal counseling.

people require more services and greater involvement of the case manager than people with

dementia who live with a caregiver (see ch. 3).

As noted above, some people with dementia

who live alone have a relative or friend who

helps them. People with dementia who live

alone, and have no relative or friend to help them

often are physically and emotionally isolated,

fearful, and suspicious. They may be the most

difficult patients to link to appropriate services.

They also may be the most in need of services.

To be effective, a linking system must have

methods of reaching and working with them, as

well as with patients who have an an informal

caregiver to help them.

Many decisions are involved in the process of

linking people with dementia to services, including decisions about what services are needed,

who will provide them, who will pay for them,

and, perhaps most importantly, whether the

patient will be cared for at home or in a nursing

home or other residential care facility. Because

of their cognitive deficits, people with dementia

may not be able to make those decisions for

themselves, thus raising difficult questions about

who should make the decisions and on what

basis. Some people with dementia retain sufficient cognitive abilities to make decisions about

services for themselves, but their decisionmaking capacity is likely to be uncertain and

fluctuating (see ch. 4). Regardless of who

ultimately makes the decisions, patients’ cognitive deficits complicate decisionmaking in the

linking process.

Lastly, the prevalence of co-existing medical

conditions among people with dementia has

implications for how they, their families, and

others perceive their problem and service needs

and how they are likely to enter the service

system. For the purposes of this discussion, one

could imagine a continuum of people with

dementia that extends from a person who has

dementia and no co-existing medical problems

at one end to a person who has one or more

serious medical problems and (often unnoticed)

dementia at the other end.

The latter type—a person with serious medical problems and unnoticed dementia—is exemplified in the findings of two studies. One study

concerned people who were hospitalized following a heart attack or heart surgery (53).

Although all the subjects were considered free

of any dementing illness, the researchers found

that 40 percent had significant memory impairment and disorientation, and another 30 percent

had milder cognitive deficits. Another study that

concerned people hospitalized following hip

fractures also found that 40 percent had significant cognitive deficits (67). These patients were

in an acute medical care setting and had obvious

medical care needs. If they continued to be

cognitively impaired at the time of hospital

discharge, appropriate planning for their posthospital care would require taking their cognitive status into account. This would mean

raising questions about whether the patients

could comply with treatment recommendations

(e.g., medication schedules and rehabilitation

procedures) and whether the patients who had

previously lived alone could safely continue to

do SO.

Patients such as those in the two studies just

mentioned would benefit from a linking system

that is skilled in working with people with

dementia. On the other hand, since their cognitive deficits were not identified by hospital staff,
18 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

it is unlikely these patients would have been

referred to a linking system designated to serve

people with dementia exclusively if such a

system existed.

Hospitalized patients with unrecognized dementia represent one extreme on the continuum.

OTA does not know how many such patients

there are. In the middle of the continuum are

people who have an identified dementing disease and co-existing medical conditions. From

the perspective of this assessment, they would

be categorized as people with dementia. In

contrast, some families, physicians, and others

would categorize them in terms of their other

medical conditions and regard the dementia (if

noted at all) as a complicating factor in the

treatment of those conditions.

How families, physicians, and others perceive

people with dementia determines to a great

extent how they enter the service system. It also

determines the type of agency or individual a

patient or family will approach, be referred to,

or accept assistance from in finding services. If

a linking system is designated to serve people

with dementia exclusively, it is unlikely to be

used for those who have a dementing disease but

are not perceived by their families, physicians,

or others as ‘‘people with dementia. ’

Characteristics of Families and Other

Informal Caregivers

Families, friends, neighbors, and others provide care informally for most people with

dementia, and many families and other informal

caregivers also link people with dementia to

services (85,1 99,479,749). They may contact an

information and referral or case management

agency or contact service providers directly to

arrange services. Other caregivers are unable to

arrange services themselves. In either case, the

characteristics of families and other informal

caregivers affect the linking process, and understanding those characteristics is essential for

determining what kind of system is needed to

link people with dementia to services.

Photo credit: Cleveland Chapter of the Alzheimer’s Assoaciation

Families and others who do not think of the person they are

oaring for as a “person with dementia” are unlikely to

turn for help to a linking system that is designated to

serve people with dementia exclusively.

Who Are the Informal Caregivers?

Informal caregivers of people with dementia

are diverse. They vary with respect to their age,

sex, and relationship to the patient; whether they

live with the patient; their socioeconomic status;

their educational, ethnic, and cultural background; their work and other caregiving responsibilities; and many less easily documented

factors, such as the quality of their relationship

with the patient and their attitudes about caregiving and the use of services.

No national data are available on the characteristics of informal care givers of people with

dementia. One study in North Carolina of 501

caregivers of people with dementia found that

54 percent were spouses, 33 percent were adult

children of the patient, 10 percent were siblings

or other relatives, and 1 percent were friends

(242). The caregivers ranged in age from 21 to

90, with an average age of 58. Seventy percent

were women.
Chapter l-Summary and Overview ● 19

Some families care for more than one impaired person. A study of middle-aged women

who were caring for their elderly mothers found

that one-fourth also were assisting another

elderly relative (83). The study described a

couple in their early 30s, about to have their first

child, who were caring for the wife’s terminally

ill mother and the confused grandmother for

whom the mother had been caring.

Some people with dementia have several

caregivers. Often, a primary caregiver provides

most of the physical care and supervision, while

other relatives and friends help out occasionally.

These “secondary caregivers” frequently help

to locate and arrange services (199,749). For

that reason, patients who have a secondary

caregiver maybe more likely than other patients

to receive services (483).

Although many informal caregivers are healthy

and most are cognitively normal, some are

physically frail, and some are almost as confused as the person they are assisting. One

spouse or sibling who has been taking care of the

other spouse or sibling for some time may

become physically or cognitively impaired, or

both. In that event, a linking system is confronted with the difficult task of arranging

services for two impaired people living together,

in effect, without a caregiver.

Employed Caregivers—At least one-third of

caregivers of people with dementia are employed, full or part-time (242,448,655). Interviews with employed caregivers of demented

and nondemented people and their employers

indicate that caregiving and job responsibilities

frequently conflict. Even if caregivers can

arrange daytime care for the patient, they need

to call service providers, take the patient to

appointments, and go to government offices to

apply for benefits during work hours. Worry

about the patient also interferes with their

productivity (198,233,443,603,797).

Employed caregivers of elderly people indicate that one of their greatest needs is for

information about available services and sources

of funding for services (443). A study that

compared employed caregivers of cognitively

impaired v. physically impaired elderly people

found that the caregivers of the cognitively

impaired people were more likely than the

caregivers of the physically impaired people to

express a need for information about services

(740a). To be effective, a linking system must be

accessible to employed caregivers and be responsive to their needs.

Long-Distance Caregivers—Many American families are geographically separated. The

adult children or other relatives of a person with

dementia may live far away but still try to

function as long-distance caregivers. Little is

known about long-distance caregivers of people

with dementia. Commentaries on long-distance

caregivers of elderly people in general indicate

that they face extreme difficulties in trying to

arrange and monitor services for a relative in

another community (17,1 16,188). Such problems probably are more severe when the elderly

person has dementia and cannot provide accurate information about his or her condition or

monitor the services he or she receives. To be

accessible to long-distance caregivers, a linking

system must be identifiable in some uniform

way nationally so that caregivers know who to

contact for assistance.

Ethnic Minority Caregivers—Ethnic minority caregivers differ from each other in many

ways, but there are some characteristics and

attitudes that occur more frequently in ethnic

minority groups than other societal groups and

have implications for the kind of linking system

that would meet their needs. The most obvious

example is language differences. A linking

system must be able to communicate with

caregivers in a language they understand well

because the details and decisions involved in

locating and arranging services are both complex and emotionally loaded (866). More subtle

differences are perceptions of dementia (e.g.,

whether it is seen as an illness, a part of normal

aging, or ‘‘craziness’ and attitudes about the

use of services, both of which are influenced by

each group’s cultural heritage, beliefs, traditions, and customs. The special aspects of
20 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

linking ethnic minority people with dementia

and their caregivers to services are discussed

later in this chapter.

Informal Caregivers of Nursing Home Residents With Dementia—Many informal caregivers continue to regard themselves as the

primary caregiver after their relative or friend

with dementia is admitted to a nursing home

(198,244). Some visit daily and assist with

personal care. Many continue to arrange medical

and other services and to handle the person’s

financial affairs. Some try to arrange in-home

services that would allow them to bring the

person home. Thus, relatives and friends of

nursing home residents with dementia are likely

to continue to need and use a linking system.

Caregivers’ Experience of Burden

Taking care of a person with cognitive and

self-care deficits and psychiatric and behavioral

problems can be exceedingly difficult. Having

to watch the person’s inevitable deterioration

compounds the caregiver’s distress. For these

reasons, the family of a person with dementia is

often the second victim of the disease.

Caregiver burden has been described in terms

of:

●

●

●

objective patient characteristics and behaviors that create demands on the caregiver;

the caregiver’s subjective experience of

those demands; and

the objective impact of caregiving on the

physical and mental health, social participation, and financial status of the caregiver

(932).

Patient characteristics and behaviors that are

particularly burdensome for some caregivers

include incontinence, severe functional impairments, hallucinations, suspiciousness, agitation,

wandering, catastrophic emotional reactions,

disruptiveness at night, behaviors dangerous to

the patient or others, and the patient’s need for

constant supervision (125,295,681,938).

Not all caregivers experience those characteristics and behaviors as burdensome, however,

and there is a surprising lack of correlation

between patient characteristics and behaviors

and the caregivers’ subjective experience of

them (244,643,668,938). Some caregivers’ subjective experience of burden is less than might

be expected given the objectively difficult

situations they face (291,937). Moreover, many

caregivers have positive feelings about caregiving and pride in their ability to manage

difficult caregiving situations (125,242,

448,643).

To note those positive feelings and the lack of

correlation between patient characteristics and

behaviors and caregivers’ subjective feelings of

burden is not to minimize the problems faced by

caregivers. In fact, informal caregivers of people

with dementia experience more subjective feelings of burden and more negative consequences

of caregiving (e.g., increased use of alcohol and

psychotropic drugs, reduced immune function,

and reduced participation in social activities

than caregivers of other elderly people or other

comparison groups) (71,242,291,296,41 1,415,

610,612,740a). The discussion here is intended

only to highlight the complexity and diversity of

caregivers subjective experience of the demands of caregiving.

Anecdotal evidence suggests that the individuals who link people with dementia to services

are not always aware of that complexity and

diversity. For example, a physician, nurse,

social worker, or other individual may observe

a patient with severe cognitive and self-care

deficits and frequent behavioral problems, assume the family is experiencing intolerable

burden, and determine that nursing home placement is the only service option. The family, on

the other hand, may feel that they are managing

relatively well and may just want some respite

care. When confronted with a recommendation

for nursing home placement, the family may

conclude that the individual making the recommendation does not understand, and the family

may withdraw completely. As a result, the

opportunity to link the patient and family to

appropriate services is lost (see ch. 3).
Chapter l-Summary and Overview ● 21

Photo credit: Bill Adams

Taking care of a person with dementia can be exceedingly

difficult. Nevertheless, many caregivers have positive

feelings about caregiving and pride in their ability to

manage difficult caregiving situations.

The opposite situation may also occur. A

physician, nurse, social worker, or other individual may observe a patient with mild cognitive,

self-care, and behavioral problems and assume

wrongly that the family is not experiencing

burden. If the patient and family are not linked

to appropriate services, however, the patient

may be at risk of inadequate care.

Many factors mediate between patient characteristics and behaviors that create demands on a

caregiver and the caregiver’s subjective experience of burden. Some of those factors are

unchangeable (e.g., the age and sex of the

caregiver), but other factors sometimes can be

changed. One such factor is the caregiver’s

appraisal of the patient’s characteristics and

behaviors (297,487,533,938). Caregivers who

view a patient’s memory and behavioral problems as a direct consequence of a disease

generally are less bothered by them than caregivers who view the same problems as in the

patient’s control, saying, for example: “If she

paid attention, she wouldn’t be so forgetful,’ or

“He just does that to annoy me” (88). Education for caregivers about dementing diseases and

their likely effects may lead to reappraisal of

some problems and reduction in caregivers’

experience of burden.

Coping mechanisms, such as seeking information, problem solving, and emphasizing positive

feelings can also reduce subjective feelings of

burden for some caregivers (88,295,610,938).

Caregiver training and counseling can help

some people increase their coping skills. Family

support groups often give caregivers new ideas

about how to solve or minimize problems and

support to try those ideas (487,938).

Finally, social support provided by relatives,

friends, church groups, and voluntary associations may reduce a primary caregiver’s experience of burden (242,297,610,749,937). Family

group meetings that involve other relatives and

provide information about a patient’s disease

and its expected impact can sometimes reduce

the primary caregiver’s sense of isolation and

increase the emotional support and practical

assistance he or she receives (487,936).

Implications for an Effective System To Link

People With Dementia to Services

To be effective, a linking system must be

accessible to all kinds of informal caregivers and

responsive to their diverse needs, including both

the needs of caregivers who are as capable of

locating and arranging services as any case

manager and only need an accurate list of

available services and the needs of caregivers

who are completely incapable of locating and

arranging services and are almost as impaired as

the ‘patient. ’ The system also must be responsive to differences among caregivers in their

subjective experience of caregiving.

Lastly, a linking system must be aware of the

potentially modifiable factors that affect caregivers’ subjective experience of burden (i.e.,

their appraisal of patient characteristics and

behavioral problems, their coping mechanisms,

and available social supports). Interventions to

modify those factors may reduce the caregivers’

subjective experience of burden-a worthwhile

end in itself—and change caregivers’ views

about the kinds of help they need to care for the
22 ● confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

patient-an important consideration for a system that is intended to link people with dementia

to appropriate services. Some agencies that link

people with dementia to services provide caregiver education, training, counseling, and support services that may modify those factors.

Other agencies refer caregivers for such services. In either case, a linking system must

recognize the importance of the services, or

caregivers will not receive them.

Characteristics of the Service Environment

The kind of system that is needed to link

people with dementia to services depends not

only on the characteristics of patients and their

informal caregivers but also on what services

and sources of funding for services exist in a

community. If sufficient services and funding

and accurate information about both were available, the number of people who would need help

to obtain services would be relatively small,

although some, and perhaps many, people still

would need help in defining the patient’s needs,

overcoming their own reluctance to accept help,

and arranging services. At the other extreme, if

there were no formal services or funding for

services in a community, the functions of a

linking system would be limited to helping

people define their needs and mobilizing relatives, friends, and other informal resources to

meet those needs. The reality in most communities is that there are some (although usually not

enough) services and sources of funding for

services, and accurate information about them

often is not available. As a result, many patients

and families need help not only to define their

service needs but also to understand what

services and funding are available and to locate

and arrange available services and funding.

Types of Agencies and Individuals That May

Provide Services for People With Dementia

In any given community, the kinds of services

that may be needed for people with dementia

may be provided by many different types of

agencies and individuals. This is not to say that

all the services are available, but that if they are

available, they may be available from any of a

great variety of agencies and individuals. Individual service providers include professionals in

private practice (physicians, lawyers, nurses,

social workers, psychologists, occupational therapists, physical therapists, speech therapists,

audiologists, dentists, and dietitians), paraprofessionals, and nonprofessionals who provide

homemaker, transportation, chore, and other

services.

In some communities, the needed services are

provided by public agencies. State departments

of health, human resources, aging, social services, mental health, and public welfare or public

assistance may provide some of the needed

services through regional and local offices.

Counties and other local governments provide

some of the needed services through local health

care, social service, and mental health agencies.

Some local governments have community service councils, health coordinating councils, and

community action programs that provide some

of the services.

The U.S. Department of Veterans Affairs

(VA) provides some of the services for eligible

veterans, primarily through its 172 medical

centers (see ch. 6). The U.S. Department of

Defense provides some of the services for

eligible military personnel and their dependents

in military hospitals and clinics. Hospitals and

clinics of the Public Health Service and the

Indian Health Service also provide some of the

services for eligible people.

Area agencies on aging (AAAs), community

mental health agencies, community health agencies, adult day centers, home health agencies,

homemaker, chore, respite, and transportation

service agencies, and senior centers provide

some of the services in some communities.

Voluntary associations, such as the Alzheimer’s,

Parkinson’s, and Huntington’s disease associations, also provide some of the services, often

through their State and local chapters.

Some hospitals and nursing homes provide

some of the needed services on an outpatient

basis, in addition to their traditional inpatient

and residential care services. Private social
Chapter 1 Summary and Overview ● 23

service, nursing, family service, and senior

service agencies provide some of the services in

some communities. Other potential providers

include churches, community ministries, the

Salvation Army, YMCA, YWCA, United Way,

and other service and philanthropic groups.

Not all those agencies exist in every community. If they do, though, they may provide

services needed by people with dementia. Given

the diverse needs of such people, many of the

agencies are possible sources of assistance.

Factors That Limit the Availability of Services

Because there are many potential service

providers does not mean that enough services

are available or that a patient’s needs can be met.

As discussed in chapter 2, many details about an

agency’s services determine whether the services are really available to a particular patient

and whether they meet his or her needs. These

details include the agency’s general eligibility

criteria and any additional eligibility criteria for

a specific service, the exact nature of the service,

when and where it is provided and for how long,

what it costs, and whether there is any source of

funding for it other than client fees. These kinds

of details often reflect regulations and requirements associated with the agency’s funding

source (e.g., Medicare, Medicaid, State programs). They may also reflect State or local

government licensing or certification requirements; the agency’s mission, objectives, and

history; and the training and preferences of its

staff (391,481,641,821,83 1).

The details of each agency’s services change

from time to time, especially in response to

changes in regulations and requirements associated with its funding sources (641,821,922).

Federal, State, and local governments and private associations and foundations initiate new

services and terminate others. Publicly and

privately funded research and demonstration

projects that provide services also begin and

end. Some of the changes are small, but their

cumulative impact is to create a constantly

changing service environment.

The number and type of agencies and individual providers vary in rural and suburban or urban

areas. Some areas are ‘service rich, ’ and others

are “service poor. ” Rural areas are likely to be

service poor. Some rural counties have no

hospital, and a few have no physician. Many

lack mental health professionals and other

service providers. Because of low population

density, residents of rural areas often have to

travel a long distance to obtain services, and in

some areas, there are not enough people with

similar problems to justify specialized services

(55,58,771,912).

Linking people with dementia to appropriate

services in areas that have very few services is

difficult. On the other hand, the more services

there are in a community, the greater the

complexity of the service environment. At one

extreme, United Seniors Consumer Cooperative, a private consumer health care cooperative

in Washington, DC, identified 130 public and

private agencies that offer transportation services for elderly people in the Washington area

(800). Obtaining enough information about

those agencies to select an appropriate provider

is difficult.

Sources of Public and Private

Funding for Services

Services for people with dementia may be

paid for by the individual, his or her family,

public programs, or private, third-party sources.

Since people with dementia often need services

for years, they are likely to need public or

private third-party funding in addition to their

own resources. There are many potential sources

of such funding. At least 80 Federal programs

pay for services that may be needed for people

with dementia or provide funds so people can

purchase the services (828). Many State and

local government programs, private agencies,

and voluntary and charitable organizations also

pay for services or give people funds to purchase

them. Publicly and privately funded research

and demonstration projects pay for services in

some communities. Lastly, some people have

private insurance that covers some services.
24 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Factors That Limit the Availability

of Funding for Services

The existence of many potential sources of

funding for services does not mean that adequate

funding is available. Each source has rules that

limit the availability of funding by restricting

who is eligible and what services are covered.

Eligibility may be restricted on the basis of a

person’s age, income, assets, diagnosis, physical or mental condition, residence, family composition, and other factors. Coverage may be

restricted by rules about the type of service that

can be paid for; the profession, training, and/or

licensure of a person who can be reimbursed for

providing the service; the setting in which it can

be provided; and its duration and frequency

(124,391,641,831). The rules in each of these

areas are interrelated, so that a particular service

is paid for only if it is provided to a patient with

a certain diagnosis or condition, by a certain

provider, in a certain setting, for a given time

period. To further complicate this already confusing situation, the eligibility and coverage regulations of funding sources change from time to

time.

It is often unclear whether a person with

dementia fits within the eligibility requirements

for some funding sources, particularly Medicare

and, to a lesser degree, Medicaid, that base

eligibility on a person’s physical condition and

physical care needs. People with dementia

frequently are determined to be ineligible for

funding for services through these programs

(124,186,479,831). On the other hand, some

people with dementia receive services paid for

by the programs. This may occur because of real

differences in the physical condition and care

needs of different patients, differences in the

way a patient’s condition and care needs are

described on an application or billing form, or

different interpretations of a program’s regulations by its administrators.

Turf Issues Among Agencies and

Individuals That Provide Services

for People With Dementia

Turf issues are prevalent among the agencies

and individuals that provide services for people

with dementia. Simply stated, turf issues arise

when one agency, type of agency, or type of

professional or nonprofessional service provider regards the care of people with dementia

as its turf and believes that it, rather than another

agency, type of agency, or service provider,

offers the ‘right’ services for such people. Turf

issues arise at the national, State, and local level

and add to the complexity and fragmentation of

the service environment.

Turf issues in the care of people with

dementia arise between mental health and aging

services agencies; health care and social service

agencies; agencies that serve only people with

dementia and agencies that serve elderly or

disabled people in general; neurologists and

psychiatrists; social workers and nurses, hospitalbased home health care agencies, free-standing

home health care agencies, and independent

home care workers; for-profit and nonprofit

agencies; and myriad other combinations of

agencies and professional, paraprofessional, and

nonprofessional service providers.

Sometimes, turf issues reflect self-serving

competitions between agencies and individual

providers for the public and private funds that

pay for services and the jobs required to provide

the services. Often, however, turf issues reflect

sincere differences of opinion about which

agencies and individuals provide the “right”

services for the clients. Many of the agencies

and individuals that provide services for people

with dementia now have served the same kinds

of clients for years, although not necessarily

identifying them as people with dementia. As

attention to Alzheimer’s disease and other

diseases that cause dementia has increased

recently, those agencies and individuals claim—

often legitimately—special expertise and skill

in the care of people with dementia and regard

the care of such people as their turf.

Sometimes, there is no explicit competition or

difference of opinion about which agency or

individual provider offers the “right” services

for people with dementia. Instead, each agency,
Chapter l-Summary and Overview ● 25

type of agency, or type of individual provider

regards the care of people with dementia as its

turf and is simply unaware of others who serve

the same kinds of clients.

Services for people with dementia generally

are provided in one of several broad systems of

agencies and providers—i.e., the medical or

physical care system, the mental health system,

the social service system, the public health

system, the public assistance system, and the

aging services system. These systems are delineated by the Federal programs that fund them,

the education and training of people who work

in them, and historical divisions among State

and local government agencies that administer

the services they provide. Although not rigidly

differentiated, the systems generally are not

integrated with each other. Service providers in

one system may not be aware of services in other

systems. Moreover, agencies and individual

providers in the same system tend to have a

common perspective on dementia and the ‘right’

services for people with dementia. Thus, they

may have greater understanding of and confidence in services provided by other agencies and

individuals in the same system than those in

other systems. For all these reasons, referrals are

more likely to occur within a system than from

one system to another. For example, agencies in

the aging services system may not refer clients

to services provided by the mental health

system, and vice versa.

The Complexity of the Service Environment for

People With Dementia

The large number of agencies and individuals

that may provide services for people with

dementia, the large number of potential sources

of funding for services, and the complicated and

changing rules that limit the availability of both

services and funding create an extremely complex service environment in many communities.

Some communities have fewer agencies and

individual service providers than others, but the

rules that limit the availability of services and

funding for services remain.

The complexity of services at the community

level has been cited so frequently in discussions

about health care, long-term care and social

services for elderly and disabled people that it

has become a cliche. Nevertheless, in the course

of this study, OTA’s staff was repeatedly

amazed by that complexity. As one learns more

about services and funding for services in a

certain community, the service environment

appears more, not less, complex. It is clear that

there are some services and sources of funding

for services in virtually every community but

generally unclear whether those services and

sources of funding are really available to people

with dementia and what proportion of such

people they serve.

Two factors make the service environment

especially complex for people with dementia—

even more complex than it is for elderly and

disabled people in general. First, the service

needs of people with dementia cross the boundaries of the broad systems of agencies and

individual providers cited earlier to a greater

degree than the service needs of most nondemented people. Second, in many communities,

there are new services for people with dementia

that are not well known and may serve very few

patients but often provide good care to those

they serve. One commentator describes the

array of small, new services for people with

dementia as a “cottage industry” (698).

Implications for an Effective System To Link

People With Dementia to Services

The complexity of the service environment in

many communities makes it clear why families

and others have difficulty obtaining accurate

information about services and funding for

services. It also makes clear the need in all

communities for an accurate, up-to-date list of

available services and sources of funding for

services. OTA does not have comprehensive

data on how many communities have such a list,

but evidence from various sources suggests that

many communities do not (see ch. 2). Because

of the large number of potential service providers and funding sources and the changing rules
26 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

that affect their availability, maintaining an

accurate list of services and sources of funding

for services for people with dementia is difficult.

Yet, such a list is essential for linking them to

appropriate services.

At the start of this assessment, OTA’s staff

thought that the biggest problem families and

others face in trying to obtain accurate information about services and funding for services is

lack of information. In the course of the

assessment, it became clear that wrong and

partial information are at least as big a problem.

For example, people who contact an agency or

individual for information may be told that there

are no services when, in fact, there are services,

or vice versa. Likewise, they may be told that

there is a service, e.g., an adult day-care center,

30 miles away when there is another center

much closer. Given the complexity of the

service environment and the lack of an accurate

list of services and sources of funding for

services in many communities, it is easy to

understand why families and others receive

wrong information or only partial information

about services and sources of funding.

Having an accurate list of services would not

change the complexity of the service environment at the community level or make up for the

lack of sufficient services. It would improve

access, however, and, by letting people know

what services exist, it would allow for more

appropriate use. Likewise, having accurate information about funding sources would not

change the complexity and fragmentation of

public and private programs that pay for services

or make more funding available. It would

increase the likelihood that people would receive benefits for which they are eligible.

It is important to note that families and others

need to know not only what services and funding

for services are available, but also what services

and funding are not available. They need both

types of information in order to plan realistically

and to make informed decisions about the care

of their relative or friend with dementia.

REASONS WHY PEOPLE WITH

DEMENTIA AND THEIR

CAREGIVERS MAY NOT

USE SERVICES

No national data are available on the percentage of people with dementia who use paid

services. The findings of 11 small-scale studies

reviewed in chapter 3 indicate that only about

one-quarter to one-half of all people with

dementia who live in the community use any

paid services other than physicians’ services

(71,88,117,223,227,242,291,41 1,479,448,774, 926).

Among those people with dementia who do use

paid services, many use very few services, use

them infrequently, and/or use them very late in

the course of their illness. The findings of two

of the studies suggest that, on average, people

with dementia use fewer paid services than

people with physical impairments (71,255).

There are many reasons why people with

dementia and their caregivers may not use

services. Lack of knowledge about services is

one reason—and, in the view of family caregivers and service providers in Cuyahoga County,

Ohio, who were interviewed for this OTA study,

it is the most important reason. Three- quarters

of the caregivers and service providers who

were interviewed said that people’s lack of

knowledge about services is usually a reason

people do not use services (186).4

Knowledge about services has two components:

general awareness of services, referred to

in this report as service consciousness, and

knowledge about a specific service, including who provides it in a community,

referred to in this report as service knowledge (43 1).

Interviews with family caregivers of people with

dementia in Cuyahoga County, Ohio, found

d~e rwtits of tie study conducted for OTA in Cuyahoga County are discussed in chs. 2 and 3. A 17W report on tie study Wn be ob~ed from tie

National Technical Information Service in SpringilelcL VA (see app. A).
Chapter 1 Summary and Overview . 27

that, depending on the specific service in

question, up to 92 percent of the caregivers

lacked service consciousness—that is, they had

never heard of the service. Again, depending on

the service, up to 96 percent of the caregivers

lacked service knowledge—that is, they could

not identify a specific provider in the community (186) (see ch. 2).

Other barriers to the use of available services

are the cost of the services and the inability of

patients and caregivers to arrange the services.

Three-quarters of the caregivers interviewed in

Cuyahoga County, Ohio, said that inability to

pay for services was a reason why they did not

use services. Half the caregivers said that not

knowing how to arrange services was a reason

they did not use them (186).

Often, it is fear of future costs rather than the

current cost of services that stops caregivers

from using services. Some caregivers who

participated in Duke University’s Respite Care

Demonstration Project (see ch. 3) said they did

not know how long services would be needed for

their relative with dementia or whether they

eventually would have to pay for nursing home

care. Given those uncertainties, they were reluctant to spend even $10 a week for respite

services (291).

Many other perceptions and feelings of people with dementia and their caregivers also are

barriers to their use of services. As noted earlier,

people with dementia frequently do not recognize their impairments and do not know they

need services. In addition, many of them have

been or are afraid they will be exploited by

service providers, especially nonprofessional

in-home workers (286,934). Paranoia and suspiciousness, present in one-fourth to one-half of

all people with dementia, exacerbate those fears.

Some people with dementia isolate themselves

from everyone, including service providers,

because they are afraid that if anyone finds out

how poorly they are managing, they will be put

in a nursing home.

Families and other informal caregivers may

be reluctant to use services for many reasons.

89-150 - 90 - 2

Some informal caregivers do not perceive a need

for services, either because they do not feel

burdened by the demands of caregiving, or

because they do not regard the person with

dementia as being sick or having a disease.

Many caregivers also feel that they should

provide all the patient’s care themselves and that

it is wrong to turn to outsiders for help

(514,670,933). Others fear that people will

criticize them for shirking their obligation to the

patient if they use paid services. Such criticisms

or even the anticipation of them discourage

caregivers from using services (514,936).

Caring for a person with dementia may

require few skills that informal caregivers do not

have, although often it requires all their time and

energy. As a result, some caregivers feel guilty

about using services they could—at least in

theory—provide themselves. Others feel—

often realistically-that no one can take as good

care of the person as they can.

Some family caregivers do not use services

because they are embarrassed about” patient

behaviors, such as hallucinations, delusions, and

agitation, that suggest the patient is mentally ill,

and they want to conceal the behaviors from

other people, including service providers

(72,291,533,936). Others are afraid that the

patient will be upset by new services or that the

service providers will not be capable of caring

for the patient. Caregivers who have a bad

experience with one provider often are reluctant

to try again (88,117,186,291 ,533,670,936). Some

caregivers are so overwhelmed by feelings of

sadness, guilt, frustration, and anxiety that they

cannot think clearly about how services might

benefit them or the patient (88,137,201,533,

610,916,936). Lastly, some caregivers feel uncomfortable about making decisions for the

patient, including decisions about the use of

services (533,669).

For any of those reasons, some people with

dementia and some caregivers never use paid

services other than physicians’ services. Others

eventually use services, but not until long after

the time when an objective observer would have
28 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Photo credit: Peter Carroll

Some caregivers do not use services because they

feel-often realistically-that no one will take as good care

of the person with dementia as they can.

said they needed help. By that time, their need

for help is so great and so immediate that the

process of locating and arranging services takes

place in an atmosphere of crisis. Moreover, even

though by then the patients and caregivers need

help immediately, the feelings and perceptions

that made them reluctant to use services before

often have not been resolved. As a result, they

are ambivalent and emotionally conflicted, which

further complicates the linking process.

Some people with dementia and informal

caregivers who do not use services do not need

them. Others who say that they do not need

services-or that they do not need services

“yet”—probably do need the services for the

well-being and safety of the patient and the

well-being of the caregiver (88,514). It is

unclear whether or to what extent public or

private agencies, individual health care and

social service professionals, service providers,

or even family members should encourage

patients and caregivers to use services that they

say they do not want or need. On the one hand,

encouraging people who say they do not want

services to use them seems absurd when there

are not enough services to meet the needs of

people who are asking for them. On the other

hand, some commentators have noted that it is

often the most isolated patients and objectively

burdened caregivers who say they do not want

or need services (88,291,688). One might argue

that those patients and caregivers are more in

need of services than other patients and caregivers and that society should reach out to help

them.

FRAMEWORK FOR AN

EFFECTIVE SYSTEM TO LINK

PEOPLE WITH DEMENTIA

TO SERVICES

The characteristics of people with dementia,

of the family and other informal caregivers of

such people (if they have any), and of the service

environment that were discussed in the preceding sections imply certain requirements for an

effective linking system. This section discusses

the essential components and criteria for such a

system. Figure 1-1 illustrates those components

and criteria.

Four Essential Components of an Effective

Linking System

Drawing on the information presented in the

preceding sections and in chapters 2 and 3 of this

report and on their own knowledge about and

experience in working with people with dementia, the advisory panel for this OTA study

concluded that an effective system to link people

with dementia to services must include four

components:

. public education,

● information and referral,

• outreach, and

● case management.

Before reaching that conclusion, the OTA

advisory panel considered and ruled out other

possible components, such as diagnosis; caregiver education, training, and counseling; and

legal and financial services. The panel determined that although these services are important

for people with dementia, they are not essential

components of an effective linking system and

that patients and their families could be referred
Chapter 1--Summary and Overview ● 29

Figure 1-1—Essential Components and Criteria for an Effective System

To Link People With Dementia to Services

Components of an Effective Linking System

The system must provide:

Information and referral

Outreach

Case management

Public education

Criteria for an Effective Linking System

The system must be:

● easily identifiable nationwide

● available throughout the patient’s illness

● able to work with people with dementia who have no informal caregiver

* able to serve long-distance caregivers

● informed about available services and funding for services for people with dementia

● “dementia-friendly” and “dementia-capable.”

SOURCE: Office of Technology Assessment, 1990.
30 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

by the linking system to other agencies, organizations, and individuals that provide the services.

The OTA advisory panel also ruled out a

linking system that left out any of the four

components cited above—for example, a system that provided only information and referral.

Lastly, the panel considered whether the four

components must be provided by a single

agency or whether a consortium of agencies

could provide them effectively. The panel

concluded that a consortium of agencies could

constitute an effective linking system if a

genuine connection existed among the agencies

so that clients would not “fall through the

cracks, as they often do now.

Public education, in the context of this report,

means providing programs and materials to help

people understand dementia and the kinds of

services that may be helpful for individuals with

dementia. Such programs and materials include

pamphlets, articles, newsletters, and other publications; posters, press releases, and public

service advertising in various media; radio and

television programs; audiotapes and videotapes;

teaching packets and curricula; and lectures,

community meetings, and conferences.

Information and referral, in the context of

this report, means providing information about

and referrals to specific services and sources of

funding for services in a community. The

process can occur by telephone or in person.

As noted earlier, caregiver’s lack of knowledge about services is one of the major reasons

that people with dementia do not use services.

Both public education and information and

referral are needed to increase people’s knowledge of services. Public education programs and

materials are likely to increase service consciousness, i.e., general awareness of services, among

the people they reach and therefore increase the

likelihood that those people will search for

information about specific services when the

need arises. Public education programs and

materials usually do not provide information

about specific services. Information and referral

programs do provide information about specific

services in a community and therefore are likely

to increase service knowledge. Information and

referral programs can only assist people who

contact them, however, and people who lack a

general awareness of services may not contact

an information and referral source.

Outreach, in the context of this report, means

using an active method of identifying individuals with dementia and caregivers who need

assistance but are unlikely to respond to public

education programs or to contact an information

and referral source on their own.5 Outreach

methods to identify isolated individuals with

dementia and isolated caregivers include: screening individuals at places like senior centers and

senior nutrition sites; having health care and

social service professionals and other service

providers who interact with elderly people and

their families identify people with dementia who

may need help; and sending paid or volunteer

workers out to apartment buildings, public

housing facilities, and other sites to look for

people who may need help.

The outreach method that most closely matches

the needs of isolated people with dementia and

isolated caregivers is a “gatekeeper program’

that makes use of the observations of individuals, such as mail carriers, utility meter readers,

apartment managers, police, pharmacists, grocers, and delivery people, who come into contact

with many individuals in the course of their

regular activities. Through a gatekeeper program, these individuals-the “gatekeepers”

—are trained to identify isolated elderly people

who may need assistance and to notify a central

agency. That agency is responsible for contacting the person and assessing his or her need for

Ssome ~acies and cornmen~tors use the term outreach in a sense that is different from the sense in which it k used by OTA in w repofi hey

use it to refer to programs or services that an agency provides outside the agency. Some of these programs and services-e.g., lectures given by agency

staff members to senior citizens groups or other community groups-are effective in reaching some people with dementia and their caregivers but are

unlikely to reach isolate~ confused patients or isolated caregivers. In the context of this repo~ such programs are considered public education.
Chapter 1--Summary and Overview ● 31

Photo credit: Bill Adams

“Gatekeeper” programs in some jurisdictions rely on mail

carriers and utility meter readers to identify isolated people

with dementia who may need help.

assistance. 6 The first gatekeeper program in the

United States was implemented in Spokane,

Washington in 1978 (688). Gatekeeper programs are now in effect in many other jurisdictions (97,148,320,456,688).

Case management, in the context of this

report, means a process that includes five core

functions:

1. assessing a client’s needs,

2. developing a plan of care,

3. arranging and coordinating services,

4. monitoring and evaluating the services

delivered, and

5. reassessing the client’s situation as the

need arises.

Case management is widely cited as a potential solution for many problems in health care

and long-term care for various client populations and various types of agencies. Different

agencies and commentators use the words ‘case

management’ to mean very different things,

however, and the confusion and disagreement’

about what case management is makes it difficult to communicate clearly about case management and its role in a linking system.

Most commentators agree that case management includes the five functions just listed

(22,43,59,1 10,271,382,572,574,581,657,757,

769,891,902), but agreement about these five

functions does not resolve the confusion and

disagreement about what case management is.

For one thing, some commentators believe that

case management includes additional functions

—notably, case finding, screening, client education, and counseling. More importantly, the

implementation of the five case management

functions varies depending on many factors,

including the type of agency or organization

providing the case management; whether the

agency provides services in addition to case

management; what the goals, educational background, and experience of the case manager are;

and how big the case manager’s caseload is.

These same factors also influence the relative

amount of emphasis the case manager and the

agency place on each of the case management

functions.

Many agencies that allocate long-term care

services and funding for services use case

managers to determine people’s eligibility for

the benefits, to authorize the services and

funding, and to monitor and account for their

provision and use. When case managers are

responsible for these essentially administrative

tasks, the five core case management functions

are modified to include the tasks. For example,

service arrangement is modified to include

GSome individtis have told OTA they believe that the outreach procedures used in gatekeeper programs may invade the Privaq of P~P1e who me

ident~led as potentially in need of assistance. In contrast, individuals who administer gatekeeper programs have told O’E4 that they have procedures

for gaining the trust of a person they contact in response to notification by a gatekeeper and for obtaining at least informal consent from the person to

assess his orherneeds (95,689). Given the cognitive deficits of people with dementi% their capacity to give consent is problematic, and safeguards must

be built into any outreach program to protect their rights.
32 ● Confused Mind, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

administrative procedures for authorizing services and funding. Monitoring and reevaluation

are modified to include administrative procedures to recertify the client’s eligibility and to

account for resources used.

Some descriptions of case management, particularly in agencies that allocate services and

funding for services, make case management

sound like a series of administrative procedures

to authorize and account for services and funds

in accordance with the agencies’ policies and

regulations. Other descriptions of case management, in those agencies and in general, emphasize its clinical features and portray the case

manager more as a professional helper, problemsolver, and client advocate than as an administrator of benefits. Some commentators believe

that there is a fundamental conflict between the

role of the case manager as a helper, problemsolver, and advocate for the individual client and

the role of the case manager as an administrator

of benefits. Others believe the two roles are

compatible. In practice, many case managers

perceive themselves as performing both roles

simultaneously and without conflict (47).

If it were possible to distinguish between case

management as a clinical process and case

management as an administrative process and to

call one ‘‘case management’ and the other

something else, it would be easier for everyone

to communicate clearly about case management.

That distinction does not hold up in reality,

however, because the two processes are completely integrated in the practice of many case

managers (see ch. 3).

Because of the confusion and disagreement

about what case management is, OTA tried at

first to avoid using the words “case management’ in this report, and to focus on the five

core functions instead. That effort failed because the core functions are relevant to both

clinical and administrative case management—

the same words are used to describe what case

managers do in both instances. OTA then tried

to delineate the specific procedures that might

be involved in case management, but that effort

also was unsuccessful in distinguishing among

different kinds of case management.

The case management cited in this report as

one of the four essential components of a system

to link people with dementia to services is the

clinical process in which the case manager is a

helper, problem-solver, and client advocate.

One of the policy issues discussed in this chapter

is whether a system to link people with dementia

to services also should allocate services, in

which instance, the case manager presumably

would also have to be an administrator of

benefits. Alternatively, each client could have

two case managers, one of whom is an advocate

and helper, and the other is an administrator and

allocator of benefits. These options are discussed later in the chapter.

It is important to emphasize that not all people

with dementia and their caregivers need outreach and case management. Outreach is needed

only for very isolated patients and caregivers.

Case management is likely to be needed at least

at some points in the course of their illness by all

people with dementia who live alone and have

no relative or friend to help them. Case management is also likely to be needed by some

individuals with dementia who have an informal

caregiver, for example, those whose caregivers

are unable to define their service needs, reluctant

to use needed services, or unable to arrange

services for any reason. Because of the complexity and fragmentation of the service environment in many communities, individuals with

dementia who need several different services

may need a case manager to arrange and

coordinate the services of multiple providers.

On the other hand, some families and other

informal caregivers function as case managers

themselves (85,92,1 10,467,477,753,778), and

more caregivers might be able to do so if

accurate information about services and about

funding for services were readily available.

Criteria for an Effective Linking System

Many criteria for an effective system to link

people with dementia to services have been

suggested in the previous sections. The most
Chapter 1--Summary and Overview ● 33

important of those criteria are reviewed here:

●

●

●

●

●

●

The agencies that constitute the linking

system must be uniformly identifiable

throughout the country-perhaps by the

use of a common name, logo, or telephone

number—so that people know whom to

call for assistance in locating and arranging

services.

Because certain services (e.g., accurate

diagnosis and legal services) are needed

early in the patient’s illness and because the

service needs of people with dementia

change over time, the linking system must

be available to individuals with dementia

and their caregivers throughout the course

of the patient’s illness.

The system must be able to work with

families and other informal caregivers and

with people with dementia who live alone

and have no one to help them.

The system must be able to serve longdistance caregivers.

The agencies that constitute the linking

system must develop and maintain an

accurate list of services and sources of

funding for services that encompasses all

the kinds of services that maybe needed for

people with dementia, including services

provided by each of the broad systems of

agencies and providers (e.g., medical or

physical care, mental health, social service,

public health, public assistance, and aging)

and any new or specialized services for

people with dementia.

The linking system must be “dementiafriendly” and "dementi-capable.”

One of the policy issues discussed in this

chapter is whether the linking system should

serve people with dementia exclusively or

should serve people with dementia and people

with other diseases and conditions as well. In

thinking about this issue, it is helpful to

distinguish among three concepts— "dementiafriendly, “ “dementia-capable,’ and “dementiaspecific. ” Dementia-friendly means the linking

system is responsive to people with dementia

and their caregivers. Dementia-capable means

the system is skilled in working with people

with dementia and their caregivers, knowledgeable about the kinds of services that may help

them, and aware of which agencies and individuals provide such services in a community.

Dementia-specific means the system serves only

people with dementia. An effective system to

link people with dementia to services must be

dementia-friendly and dementia-capable, whether

or not it is dementia-specific.

The components and criteria discussed in this

and the preceding sections define to a great

extent what it means for a linking system to be

dementia-friendly and dementia-capable. Clearly,

the staff of the linking system must be knowledgeable about the usual characteristics and

service needs of people with dementia and their

families and other informal caregivers. At the

same time, the staff of the linking system must

be attuned to the diversity of people with

dementia and their caregivers. The staff of the

linking system must be aware, for example, of

the cognitive and self-care deficits typically

associated with dementia and their implications

for patients’ service needs. To identify appropriate services for individual patients, however, the

staff of the linking system also must be aware of

the heterogeneity of cognitive and self-care

deficits in people with dementia and the lack of

correlation between cognitive and self-care

deficits in some patients. Likewise, the staff of

the system must be aware of the diversity among

caregivers in their perceptions of the demands of

caregiving and their subjective experience of

burden.

As discussed in chapter 2, many agencies that

provide information and referrals for people

with dementia do not keep records on the people

they serve by either diagnosis or condition

(186,756). That agencies do not keep such

records does not prove that the individual social

workers, nurses, or other people who provide

information and referrals for the agency are

unaware of patients’ diagnoses. It suggests that

could be the case, however. If people with

dementia are not identified as such by a linking

system, they will not be referred for specialized
34 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Photo credit: Peter Carroll

Sometimes, “being connected” to someone who knows

the patient and is available to answer questions and

respond to caregivers concerns is the only assistance

a family wants or needs.

services even if the services are available;

publications that could be helpful to the caregivers will not be provided; and common

characteristics of patients that influence their

service needs and the process of linking them to

services may not be recognized. In order to be

dementia-capable, the agencies that constitute

the linking system must identify their clients

with dementia as such.

As discussed in a later section of this chapter,

OTA has included Alzheimer’s Association

chapters as one of the 11 categories of agencies

that Congress could, at least in theory, designate

as the basis for a national system to link people

with dementia to services. For that reason,

Alzheimer’s Association chapters are discussed

at some length in chapter 8. Regardless of any

other role the Alzheimer’s Association and its

chapters might play in a national linking system,

however, they have a clear role to play in

defining what it means for a linking system to be

dementia-friendly and dementia-capable.

Health care and social service professionals,

service providers, and others have useful ideas

on this subject, but the Alzheimer’s Association

has been and continues to be the definitive

source on the attitudes and concerns of Alzheimer’s caregivers. Voluntary associations that

represent people with other diseases that cause

dementia and their caregivers also have a role to

play in defining what a dementia-friendly and

dementia-capable linking system would be.

These groups should advise and monitor the

system on an ongoing basis.

The Role of a Linking System as a Source of

Potential Support

Many researchers and clinicians have commented on the importance to caregivers of

‘‘being connected’ to someone who knows the

patient and the caregiver and is available to

answer questions about the patient’s condition

and respond to the caregivers concerns

(257,412,483,610,934). Sometimes, that person

is a physician, but it may be anyone who is

knowledgeable about dementia and sensitive to

caregivers’ concerns.

Sometimes, ‘‘being connected’ ‘—referred to

as potential support by one research group

(610)----is the only assistance a family wants or

needs. Yet many agencies and individuals who

work with people with dementia do not have a

mechanism for providing that assistance on an

ongoing basis, in large part because there is no

public or private funding for it. As a result, they

are only able to meet caregivers’ need to be

connected in the context of providing specific

services for the patient.

One member of the advisory panel for this

study noted that being connected often is the

basis for appropriate use of services later on:

It has been my experience that caregivers

reach out often and fleetingly for information

regarding potentially helpful services and programs over a period of months or years before

they actually decide on help. It is quite important to have personal contact with a patient and

a family-from one to three times-in order to
Chapter 1--Summary and Overview . 35

do an assessment that leads to appropriate

guidance, care and referrals.

Often, once the visit has been done, families

previously resistive to care or intervention may

agree to assistance, and they also find their own

funds to pay for services hitherto thought to be

too expensive, unattainable, or irrelevant. The

engagement of the caregiver seems to be a

critical step in the process of giving care and

support and one about which I have seen little

or nothing documented (283).

Providing a source of potential support for

patients, families, and other caregivers may be

one of the most important functions of a linking

system. If so, the function should be defined

more clearly, differentiated from other functions

of the system, such as information and referral

and case management, and planned for specifically in the system.

AGENCIES, ORGANIZATIONS, AND

INDIVIDUALS THAT LINK SOME

PEOPLE WITH DEMENTIA

TO SERVICES

Many public and private agencies and organizations, individual health care and social service

professionals, service providers, and others

currently provide one or more of the four

functions OTA considers essential components

of an effective linking system (i.e., public

education, information and referral, outreach,

and case management) for at least some people

with dementia. Some of these agencies, organizations, and individual professionals and service

providers work almost exclusively with people

with dementia, and some work with people with

other diseases and conditions as well. For some,

linking people to services is their primary

function. For others, their primary functions are

providing health care, long-term care, social, or

other services, and they link people to services

in conjunction with providing those services.

The study conducted for OTA in Cuyahoga

County, Ohio, found that many agencies provide information and referrals for people with

dementia in the county.7 OTA’s contractors

identified 324 agencies in the county that they

thought might provide services of any kind for

people with dementia and sent a questionnaire to

each agency (186). Of the 97 agencies that

responded, 71 said they provide information and

referrals for people with dementia. No attempt

was made by OTA’s contractors to find out

whether any of the agencies that did not respond

to the questionnaire also provide information

and referrals for people with dementia, and

some may. Moreover, the questionnaire was not

sent to voluntary associations or individual

health care and social service professionals who

are also potential information and referral sources.

Thus, the total number of information and

referral sources in the county is probably much

higher.

Having a large number of agencies, organizations, and individuals that provide information

and referrals for people with dementia is good in

the sense that there are many places to which

families and others can turn for help. On the

other hand, providing information and referrals

is not the primary function of many of the

agencies, organizations, and individuals. Interviews with representatives of agencies that said

they provide information and referrals for people with dementia in Cuyahoga County, Ohio,

indicate that the agencies generally did not have

comprehensive lists of services or lists of

sources of funding for services (186). Since it is

time-consuming to maintain an accurate list of

services and funding sources, individual health

care and social service professionals and service

providers also are unlikely to have such lists.

The large number of agencies, organizations,

and individuals that provide information and

referrals for people with dementia, often without

an accurate resource list, increases the likelihood that people will receive wrong or only

partial information about services and funding

for services.
36 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Turf issues, discussed earlier with respect to

providing services for people with dementia,

arise at least as strongly with respect to linking

them to services. That is partly because agencies, organizations, and individual professionals

and service providers perceive that whoever

links people to services controls which services

are used and who gets paid for providing them

(46,661).

In the course of this assessment, OTA found

that virtually every type of agency, organization,

and individual professional and provider that

works with people with dementia is aware of and

concerned about the problem of locating and

arranging services for them. Virtually every

such agency, organization, and individual perceives itself as effectively linking some people

with dementia to services, and many of them

propose to solve the problem of locating and

arranging services for people with dementia by

expanding their role in the linking process.

Often those proposals are made without consideration or even awareness of the many other

types of agencies, organizations, and individuals that also link people with dementia to

services.

The following subsections of this chapter

describe various agencies, organizations, and

individuals that provide one or more of the four

functions OTA considers essential for linking

people with dementia to services. The discussion is not all-inclusive. Its intent is to give a

sense of the many different types of agencies,

organizations, and individuals involved and the

diversity of their approaches. The first subsection describes some of the private agencies,

organizations, and individuals that link people

to services. The second subsection describes

three Federal agency programs that provide one

or more linking functions for people with

dementia. The following two subsections summarize OTA’s findings with respect to State

programs and service systems and community

service systems that link people to services and

the State and local agencies that implement

those programs and service systems.

One of the policy issues discussed in this

report is whether Congress should designate a

single category of agencies nationwide to constitute a system to link people with dementia to

services or, alternatively, mandate that each

State designate the agencies that would make up

the linking system in that State. In analyzing this

issue, OTA identified 11 categories of agencies

that Congress could, at least in theory, designate

as the basis of a national linking system for

people with dementia if Congress chose to

establish a system composed of a single category of agencies. The last subsection explains

how OTA identified the 11 categories of agencies and presents OTA’s conclusions with

respect to the current capability of any of the 11

categories of agencies to function as a national

system to link people with dementia to services.8 The information presented in the subsection on State programs and service systems that

link some people with dementia to services

pertains to the other alternative—i.e., that Congress could mandate that each State designate

the agencies that would make up the linking

system in that State.

Private Agencies, Organizations, and

Individuals That Link Some People With

Dementia to Services

A variety of private agencies, organizations,

and individuals link some people with dementia

to services or sponsor programs that do so.

Examples of those agencies, organizations, and

individuals are discussed in this subsection.

None of these entities serves people with

dementia exclusively, but all of them serve some

people with dementia.

Most of the agencies in the 11 categories of

agencies that Congress could, at least in theory,

designate as the basis of a national linking

gAs discussed la~r in this section, the 11 categories of agencies tbat it would be at least theoretically possible for Congress tO designate as tie basis

of a national linking system for people with dementia are AAAs, community mental health centers, community health centers, Alzheimer’s Association

chapters, Family Survival Projec~ States’ regional Alzheirner’s diagnostic and assessment centers, hospital-based geriatric assessment progmrns, home

health agencies, socird health maintenance orga.nizations (S/HMOs), On Lok Senior Health Semices, and adult day centers.
Chapter l-Summary and Overview ● 37

system for people with dementia are private

agencies and organizations. They are discussed

at length in chapter 8 and are not discussed in

this subsection.

Private Companies’ Elder Care Programs

In recent years, concern has increased in the

business community about the problems of

employees who are caring for elderly relatives

(233). As a result, some private companies now

provide elder care programs for their employees. These programs typically furnish information about community services for elderly

people and sometimes offer company employees caregiver support groups, flexible work

schedules, unpaid leave to allow them to attend

to caregiving responsibilities, and counseling

about problems in taking care of an older person

(151,443,659).

IBM has gone significantly beyond many

other companies in helping its employees and

retirees find services for themselves or for

elderly relatives. In 1988, IBM initiated its Elder

Care Referral Service, which provides information about available services, personalized counseling to help people clarify their service needs,

referrals to community service providers, and

short-term followup to determine whether the

employee’s or retiree’s needs were met (1 16,

659,660). Work/Family Elder Directions, the

private agency in Massachusetts that administers IBM’s Elder Care Referral Service, subcontracts with agencies in 175 communities in

which there are a significant number of IBM

employees or retirees to provide the information

and referral, counseling, and short-term followup that are part of the Elder Care Referral

Service. IBM employees or retirees who live in

other areas of the country can call Work/Family

Elder Directions for assistance.

To select the agencies that would implement

IBM’s Elder Care Referral Service, Work/

Family Elder Directions conducted a communityby-community analysis (659). That analysis led

to the conclusion that there was no single

category of agencies that could provide the

service in all 175 communities. The agencies

that eventually were selected to provide the

service include AAAs, family service agencies,

visiting nurse and other home health agencies,

information and referral agencies (e.g., United

Way information and referral), case management agencies, multipurpose senior service

agencies, protective service agencies, and a few

hospitals. Some of the agencies receive a basic

fee intended to cover a certain number of cases

at a per case rate; because they have staff and

phone lines dedicated to the IBM project, those

agencies receive the fee whether or not they

serve the projected number of IBM clients.

Other agencies get a fixed fee for each IBM

client they serve. In 1988, the program served

8,100 IBM employees or retirees.

Since 1988, several other private companies

have contracted with Work/Family Elder Directions for similar programs (659). These companies include Arthur Anderson and Co., Aetna

Life and Casualty, several divisions of ColgatePalmolive, Johnson and Johnson, and several

divisions of CIBA-GEIGY. Other private companies have contracted with AAAs and other

public and private agencies for such programs

(450,577 ).9

United Seniors Health Cooperative

United Seniors Health Cooperative is a private, nonprofit organization in Washington, DC,

that furnishes its members with information and

assistance in obtaining services and negotiates

with service providers for discounts and special

services for its members. Elderly people and

their families can join the cooperative for an

annual fee. The cooperative was established in

1987 and, by July 1989, had 12,000 members

(208). To OTA’s knowledge, it is the only

organization of its kind in the country.

9ca F~~~~ Go~~mment agencies ~so con~act for elder cme progr~ for their employ~. Since 1988, the ofike of Personnel h&l.IMgeInt311t

hascontractedwith aprivate agency in Iandsdale, Pennsylv@ the Partnership Group, to provide telephone consultations, educational materhds, onsite

workshops, and personalized information and referrals for their employees who are caring foranelderlyrelative. From early 1989 to May 1990, the Social

Security Administration contracted with the partnership Group for similar assistance for its employees in 7 Southeastern States.
38 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

The cooperative provides information about

services and about sources of funding for

services. It has developed a computerized ‘Benefits Outreach and Screening Service’ that

identifies a person’s potential eligibility for

more than 50 Federal, State, and local funding

programs. To use the service, an individual

completes a questionnaire about his or her

finances, medical condition, and other information. The information is fed into a computer,

which reviews the available funding programs,

identifies benefits the person is potentially

eligible for, and prints out a list of those benefits

and instructions on how and where to apply for

them. The software package for the “Benefits

Outreach and Screening Service” is available,

and agencies in several areas of the country have

purchased it (799). As of late 1989, the software

was being adapted for use in New York State,

where it will not only identify the benefits a

person may be eligible for but also print out

completed applications for six public programs

that pay for services (208).

Connecticut Community Care, Inc.

Connecticut Community Care, Inc. (CCCI) is

a private, nonprofit organization that provides

case management for public agencies, corporations, foundations, and individuals in Connecticut. CCCI evolved from Triage, one of the first

long-term care demonstration projects in this

country (see ch. 7). When the demonstration

ended, CCCI was established to continue and

expand the Triage model of case management

(677). OTA is aware of some other private,

nonprofit case management agencies like CCCI

in other parts of the country.

In 1988, CCCI expected to serve 7,000

clients, including elderly individuals referred by

Connecticut’s Department of Aging, AAAs, and

the State Medicaid agency. Those public agencies pay CCCI on a per case basis for assessments, care planning, service arrangement and

coordination, and service monitoring. CCCI

allocates and arranges a wide range of health

care, long-term care, social, and other services

paid for by the public agencies (409,677).

In 1988, CCCI began providing case management for individuals on a fee-for-service basis

(75). The organization offers comprehensive

case management that includes the five core

case management functions, but individuals also

can purchase single case management functions,

such as assessment or service coordination (see

ch. 3).

Private Geriatric Case Managers

Private geriatric case managers are individual

professionals (generally social workers or nurses)

and others who provide client assessment, care

planning, service arrangement and coordination,

monitoring, and a variety of services for elderly

people on a fee-for-service basis. The case

management and services generally are highly

personalized to respond to the individual needs

of each client. Although no data are available,

anecdotal evidence indicates that many clients

of private geriatric case managers have dementia (136,450).

Private geriatric case managers often work

independently or with one or two other case

managers under the umbrella of an incorporated

firm. A 1986 survey of 117 private geriatric case

management firms, conducted by Interstudy,

found that 65 percent of the firms employed only

1 or 2 case managers (357). Their caseloads also

tended to be small-one-third worked with 10 or

fewer clients per year. Most had been in

business 3 years or less. Seventy percent of the

firms were independent, and the remaining 30

percent were affiliated with hospitals, social

service agencies, or nursing homes. Their fees

ranged from $13 to $100 an hour, with 53

percent charging $50 an hour.

Private geriatric case managers sometimes

are hired and paid by a relative of an elderly

person, but some elderly people hire and pay a

case manager themselves. More than half of the

private geriatric case management firms that

responded to the Interstudy survey said they

provide case management for elderly people

who live alone (357).
Chapter l-Summary and Overview ● 39

Private geriatric case managers and private

geriatric case management firms often assist

long distance caregivers. As of 1988, for example, Aging Network Services of Bethesda,

Maryland, had developed a network of 250

social workers in communities across the country that could be hired by families or others to

assist an elderly person in another locality (450).

Some private geriatric case management firms

contract with public agencies to provide case

management for the agencies’ clients. In general, however, private geriatric case managers

serve people who are ineligible for case management through public agencies because their

income and assets exceed the agencies’ eligibility criteria.

Elderlink

The National Association of State Units on

Aging, a private association, is working with its

members and other agencies to develop ‘‘Elderlink” a national telephone information and

referral program for elderly people (577). The

program was initiated in Illinois in 1989 (148)

(see figure 1-2). The primary objective of

Elderlink is to assist long-distance caregivers in

locating services for a relative or friend who

lives in another community (577). The planning

committee for Elderlink included representatives of State units on aging and AAAs-two

types of agencies that are designated by States

to implement certain provisions of the Older

Americans Act. State units on aging are public

agencies, but AAAs include public and private

agencies. If and when Elderlink is established

nationwide, it is likely to reflect a partnership of

public and private agencies.

Life Care and Other Residential Care

Communities and Programs

Life care communities (sometimes referred to

as continuing care retirement communities) are

organizations that provide housing and a variety

of services for their residents in a campus-like

setting or a single building (784). Typically, life

care communities provide health care, longterm care, social, and other services, such as

meals, transportation, and housekeeping, for

their residents who need such services. Many

life care communities also provide nursing

home care. The provision of these services in a

single setting eliminates for residents of the life

care communities many of the problems in

locating and arranging services that are the topic

of this OTA report. Elderly individuals are

usually admitted to life care communities while

they are still able to function independently. As

they age, some residents of life care communities undoubtedly develop dementia, but OTA is

not aware of any information about the number

of individuals with dementia living in life care

communities.

Recently, OTA has received a number of calls

from private agencies and organizations that are

developing or considering developing residential care communities specifically for people

with dementia. Although each agency and

organization has somewhat different plans, most

intend to provide apartments for people with

dementia and their spouses, supportive services

for the individuals and their families, adult day

care, and nursing home care on the same

campus. Some agencies and organizations also

intend to provide a variety of services for people

with dementia who do not live on the campus,

e.g., diagnosis, multidimensional assessment,

in-home and institutional respite care, caregiver

education and counseling, and support groups.

A major objective of these residential care

communities is to provide a single place to

which families and other caregivers can turn for

help throughout the course of the patient’s

illness. The residential care communities are

intended specifically to resolve the problem of

locating and arranging services for people with

dementia.

An alternative to a residential care community is the ‘‘life care at home” model of care

developed by the Bigel Institute for Health

Policy at Brandeis University and currently

being tested in several sites with funding from

the Robert Wood Johnson Foundation and the

Pew Foundation (135,783). People who enroll

in a ‘‘life care at home” program pay an entry
40 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

a

n

w

. -

0

c
Chapter 1--Summary and Overview ● 41

fee, monthly fees, and copayments for certain

services. The program, in turn, is obligated to

provide a wide range of services intended to

allow them to continue living at home for as

long as possible. The services include nursing

home care, home health aide and homemaker

services, respite care, adult day care, and some

routine medical care. Decisions about which

services individuals receive are based on an

assessment and care plan developed by a case

manager. The case manager arranges any services provided by the program and helps the

enrollees arrange services that are not provided

by the program (e.g., transportation and home

maintenance). Initially, “life care at home”

sites will enroll only healthy older people, thus

excluding people with dementia. For people

who enroll in such a program and later become

demented, however, the “life care at home”

model is likely to eliminate most problems in

locating and arranging services.

Federal Agency Programs That Link Some

People With Dementia to Services

The Federal Government provides partial

funding for many agencies and organizations

that link some people with dementia to services,

but the three programs described in this subsection are fully or primarily funded by Federal

agencies—two by the National Institute on

Aging and one by the Health Care Financing

Administration. All three programs are quite

new.

The Alzheimer’s Disease Education and

Referral Center

In 1986, Congress mandated, through Public

Law 99-660, that the National Institute on Aging

establish a clearinghouse to disseminate ‘ ‘information concerning services available for individuals with Alzheimer’s disease and related

dementias and their families. ” In 1987, the

National Institute on Aging contracted for

market research to determine the attitudes and

knowledge about Alzheimer’s disease among

the general public. The results of the research

show that although virtually all the individuals

who participated in the research had heard of

Alzheimer’s disease, few had in-depth knowledge of the disease or where to go for help (850).

The research participants identified several

sources of information about Alzheimer’s disease, notably the media, physicians, the library,

hospital/community outreach programs, and

local telephone health information lines (765).

Most of the research participants said they

preferred a local source of information because

local sources are more accessible and more

likely to provide personal attention, but many of

them recognized the potential benefits of a

national source, e.g., credibility, access to the

latest research findings, and access to information about resources outside the local community.

In 1987, the National Institute on Aging

contracted for a survey of Alzheimer’s Association chapters to determine the number of calls

received by the chapters (an average of 10 to 30

calls per month);, the source of the calls (family

members, social workers, respite care providers,

and friends of Alzheimer’s Association members); the types of information requested by

callers (information about the symptoms and the

progression of the disease, the latest research

findings, and sources of financial assistance);

the chapters’ perception of the types of information needed (better financial and legal information, medication information, information on

the latest research findings, information on

sexuality and intimacy, and educational materials for physicians); and the chapters’ perception

of the best formats for that information (videotape, printed materials, large print materials, and

Spanish language materials) (765). In early

1988, the National Institute on Aging convened

a planning conference of experts on Alzheimer’s

disease education, treatment, and caregiving to

determine needs and identify gaps in information dissemination (691,850).

Despite this research and planning effort, the

process of establishing the mandated clearinghouse engendered many of the same turf issues

and concerns discussed earlier in this chapter.

The major concerns with respect to the clearinghouse pertained to the possible duplication of
42 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

efforts with other organizations that already

provide information about Alzheimer’s disease

and dementia and differences of opinion about

which agency or organization is best able to

provide that information.

In 1989, the National Institute on Aging

awarded a contract for the operation of the

mandated clearinghouse, referred to as the

Alzheimer’s Disease Education and Referral

(ADEAR) Center. The ADEAR center will

develop and maintain an online database, available to the public, that includes books, articles,

and other publications and materials about

Alzheimer’s disease and programs for dementia

patients, their caregivers, and the professionals

who work with them. The center will respond to

requests for information from anyone (850). It

will translate the latest scientific and technical

information about Alzheimer’s disease into

language comprehensible to the lay person,

identify gaps in the current literature for the lay

person, develop new publications to fill those

gaps, and revise outdated publications.

The center will also set up a national toll-free

telephone information line. As of April 1990,

the toll-free line was not operational, but

National Institute on Aging officials expected

that it would be operational by the end of 1990.

According to National Institute on Aging officials, callers to the toll-free line ‘‘will be

provided information on the center and its

services and be referred to other national and

State organizations for more specific information on services in their locale” (850). The

center will work with a variety of other organizations to disseminate information about Alzheimer’s disease (e.g., the Alzheimer’s Association, the American Association of Retired Persons, State units on aging, and AAAs).

Alzheimer’s Disease Research Centers

The National Institute on Aging funds 15

Alzheimer’s Disease Research Centers (ADRCs)

at university medical centers nationwide. The

ADRCs conduct biomedical and clinical research about Alzheimer’s disease. As part of

their clinical services, the ADRCs provide

diagnostic evaluations and followup care for

people with Alzheimer’s disease. One aspect of

the followup care is referrals to community

services. Recently, the National Institute on

Aging has encouraged the 15 ADRCs to develop

satellite clinical care facilities in order to expand

the number of people and geographic areas they

serve.

In addition to clinical services and referrals

for individuals with Alzheimer’s disease, the

ADRCs provide public education about dementia and the care of people with dementia. Some

of the ADRCs have developed informational

materials about Alzheimer’s disease, and some

ADRCs have cosponsored with the Administration on Aging caregiving conferences for family

caregivers and other interested individuals. The

staff of the ADRCs also respond to requests

from the general public for information about

and referrals to community services, although

this is not one of the ADRCs’ primary functions.

OTA does not know how frequently ADRC staff

members respond to calls from the- general

public for information about and referrals to

services.

The Medicare Alzheimer’s Disease

Demonstration

In 1986, Congress mandated, through Public

Law 99-509, that the Health Care Financing

Administration conduct at least five 3-year

demonstration projects to determine the effectiveness, cost, and impact of providing comprehensive services for Medicare enrollees who

have Alzheimer’s disease or a related disorder

(504). The comprehensive services to be provided through the demonstration projects include adult day care, in-home services, and

education and counseling for family caregivers.

In 1988, eight demonstration sites were selected. Four of the sites are nonprofit organizations, three of which are sponsored by consortia

of local agencies. The other sites include a

hospital-based diagnostic and assessment program, a mental health center, a combined

nursing home/community care organization,

and a private, for-profit physician group practice
Chapter l-Summary and Overview . 43

organization. Each site is expected to enroll 500

patients, half of whom will be assigned to a

control group.

Two models of care are being tested: one

model in which the demonstration sites receive

up to $300 a month for services for each patient,

and each case manager works with 100 patients,

and another model in which the demonstration

sites receive up to $500 a month for services for

each patient, and each case manager works with

30 patients. The case managers are responsible

for arranging and coordinating services for the

patients. Patients and their families must pay for

20 percent of the cost of services covered by the

demonstration projects.

As of June 1990, most of the demonstration

sites were still enrolling patients, and no conclusions had been reached with respect to the

effectiveness, cost, or impact of the expanded

services and case management. Anecdotal evidence suggests that some of the demonstration

sites were having difficulty enrolling patients,

particularly patients in the early stages of a

dementing disease. Some observers have suggested that this difficulty may reflect a failure by

some of the sites to implement effective outreach procedures to identify individuals and

their caregivers who might enroll in the project.

Other observers have suggested that the difficulty of enrolling patients in the early stages of

a dementing illness may reflect the reluctance of

families and others to acknowledge or call

attention to the patient’s illness.

State Programs and Service Systems That Link

Some People With Dementia to Services

All States have procedures by which they link

at least some people with dementia to services.

In thinking about States’ procedures for linking

people to services, it is useful to distinguish

between linking programs and service systems.

As defined by OTA:

. linking programs are programs that perform one or more of the functions OTA

concludes are essential for an effective

●

system to connect people with dementia to

services (i.e., public education, information and referral, outreach, and case management); and

service systems are organizational entities

that pool funds from several sources and

integrate the functions of various agencies

in a given geographic area in order to create

a consolidated system; one function of

service systems is to connect people to

services.

An important difference between linking programs and service systems is that linking

programs can be added to the service environment in a State or community without changing

the structure, function, or relationship of existing agencies or the way services are funded. In

contrast, the creation of a service system necessarily changes the structure, functions, and

relationship of existing agencies and funding

procedures.

Many States have programs that link at least

some people with dementia to services, and

some States have a service system that links

some people with dementia to services. Most

State linking programs and service systems are

for elderly people or elderly and disabled

people, in general. Recently, however, some

States have developed dementia-specific linking

programs. OTA is aware, for example, of at least

14 States that, in 1989, had a statewide telephone information and referral program specifically for people with dementia (see ch. 7).

Missouri is one of a few States that have both a

statewide telephone information and referral

program for elderly people and a statewide

telephone information and referral program for

people with Alzheimer’s disease and their

caregivers (219).10 In addition to maintaining

telephone information and referral programs,

some States, such as New York and New Jersey,

have published resource directories for family

caregivers and others that list available services

for people with dementia (601,606).

lOMSSofi’s ~o~tion and refemal pro- for elderly people and people with Alzheirner’s disease are described iU box 7-A ~ Ch 7.
44 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Some States have developed or paid for the

development of public education programs and

materials about dementia and services for people with dementia. In Alaska, for example, the

Older Alaskans Commission has given grants

since 1984 to the Alzheimer’s Disease Family

Support Group (a private organization in Anchorage) to provide such programs (282,576).

Additionally, public education has been one of

the primary functions of the State task forces and

committees that have studied the problem of

Alzheimer’s and other dementing diseases.

As noted earlier, gatekeeper outreach programs have been established in many jurisdictions. Often these programs are a joint initiative

of the State department, division, or commission

on aging, local AAAs, and utility companies

(320). Illinois has a statewide system of gatekeeper programs administered by the Illinois

Department on Aging and local AAAs in

conjunction with several utility companies and

rural cooperatives. With the addition in 1989 of

Commonwealth Edison in northern Illinois, the

gatekeeper programs now cover the whole State

(148).

Lastly, all States have at least one program

that provides case management for elderly

people, although some of these programs serve

very few people (354). Some States provide case

management through an independent case management program; some States provide case

management as a component of a program that

also pays for services, such as a Medicaid 2176

Home and Community-based Waiver program

(see ch. 7); and some States provide case

management through several different programs.

State programs that provide case management

generally are not dementia-specific, but they do

serve at least some people with dementia.

State programs that link some people with

dementia to services are administered at the

State level by different agencies in different

States and by several agencies in some States.

State aging agencies (departments, divisions,

commissions, etc.) probably administer more of

the existing linking programs than any other

type of State agency, but many other types of

State agencies (e.g., State departments of health,

social services, or human services and State

Medicaid agencies) are also involved.

At the local level, State programs that link

some people with dementia to services are

implemented by numerous kinds of agencies,

including local offices of various State and

county departments, city government agencies,

AAAs, and many types of private agencies.

Often, several different local agencies are involved. In some States, programs that link some

people with dementia to services are implemented by agencies that have no counterpart in

other States.

The number of States that provide and/or fund

linking programs that serve at least some people

with dementia is impressive and is growing, but

it is also true that some States do not have such

programs, and some States have linking programs that only serve a small percentage of all

people with dementia and their caregivers. In

addition, the four functions identified by this

OTA assessment as essential components of an

effective linking system for people with dementia (i.e., public education, information and

referral, outreach, and case management) generally are not provided through the same State

program, so people with dementia can easily

“fall through the cracks” between programs.

State programs that link people to services are

extremely diverse. That diversity makes it

difficult to design a national linking system that

would build on rather than duplicate or disrupt

the existing programs. If Congress mandated a

single category of agencies to constitute a

national linking system, that decision would

undoubtedly engender resistance from State

agencies that administer linking programs that

would be duplicated or disrupted by the congressional mandate.

In the past 10 to 15 years, in addition to, or

instead of, establishing public education, information and referral, outreach, and case management programs, some States have developed a

consolidated service system. These service sys-
Chapter 1--Summary and Overview . 45

terns are often referred to as “long-term care

systems.” They generally connect their clients

to a range of health care, long-term care, and

social services, including services provided or

paid for by the system.

States’ purposes in developing consolidated

service systems have been:

●

●

●

●

●

●

to reduce the complexity and fragmentation

of services;

to connect people to the services they need;

to limit unnecessary use of nursing home

care;

to gain control over public, and especially

State, expenditures for health care and

long-term care services;

to create an organizational and administrative structure that allows for efficient and

appropriate use of limited services and

funds by targeting available services to the

people who need them most and avoiding

duplication of local agencies’ efforts; and,

ultimately,

to shift some of the public funds now spent

on nursing home care to in-home and

community services (353,362,372,374, 587).

The development of a State service system

may involve several kinds of changes in agencies and procedures at the State and community

level, including:

the designation of a single agency at the

State level to administer and oversee all the

Federal and State programs that pay for

services;

the designation of a single agency at the

community level to administer services

paid for by all Federal, State, and local

government programs;

the pooling of funds from different programs to pay for services; and

the establishment of a uniform client assessment procedure, including the use of a

common assessment instrument, for services paid for by various programs.

States’ consolidated service systems include

case management as a central component. The

role of the case manager in such systems is often

quite different from the traditional case management role in which the case manager coordinates

or ‘‘brokers’ services from various community

agencies for an individual client; in a consolidated service system, a case manager more often

administers and allocates services that are already coordinated by the structure and functions

of the system.

Consolidated service systems reduce the complexity and fragmentation of the service environment for the people they serve and generally

make it easier for those people to connect to

appropriate services, but many of the existing

State service systems do not serve all types of

people with dementia. Some systems do not

serve people under age 60 or 65, and many State

service systems focus primarily or exclusively

on low-income people and/or people with severe

functional impairments.

Targeting public funds for services to lowincome people and people with severe functional impairments seems entirely appropriate,

but such targeting is not necessarily appropriate

for linking functions. As discussed earlier,

people with dementia and their families need

help in linking to services at all stages of the

patient’s illness, including the early stages when

the patient is not severely impaired. Patients and

families with all levels of income and assets and

patients under age 60 or 65 also need help in

linking to appropriate services.

Like State linking programs, State consolidated service systems are extremely diverse.

Oregon, Wisconsin, and Illinois are three States

that have gone further than most in creating

consolidated service systems (see ch. 7). These

three States’ systems have common elements—

including a method of coordinating the administration of various programs at the State level

and methods for coordinating local agencies’

functions—but there is great diversity even in

these common elements. Oregon coordinates

the administration of programs at the State level

through a single State agency; Wisconsin uses a

human service umbrella agency; and Illinois
46 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

uses an interagency coordinating committee.

Likewise, in each State, different types of

agencies have been designated to administer

services at the local level—AAAs in Oregon,

county social service departments and “County

51 boards” in Wisconsin, and home health,

senior service, and a variety of other kinds of

public and private agencies in Illinois (587).

Perhaps, the most important observation to be

made about existing State service systems is that

considerable time and effort were required to

develop them, and difficult organizational and

turf issues had to be resolved in the process.

Most of the systems were developed incrementally. Among the obstacles they faced were:

inflexible requirements and regulations of

the Federal programs that pay for services;

administrative and organizational characteristics of State agencies that were established in the past to implement Federal

program requirements and, once established, are hard to change (436); and

resistance from interest groups that fear

that the consolidation of programs and

funding sources at the State level will

reduce overall funding for the client population they represent.

Linking programs are easier to establish than

consolidated service systems, because, as noted

earlier, linking programs can be established at

the State or community level without substantially changing the structure, functions, or

relationships among existing agencies and without engendering the intense organizational and

turf issues that must be overcome in the process

of creating a consolidated service system. On

the other hand, linking programs do nothing to

reduce the fundamental complexity and fragmentation of the service environment, so the

problems that patients and families encounter in

connecting to appropriate services because of

the complexity and fragmentation of the service

environment remain.

If Congress designated a single category of

agencies to constitute a national linking system,

States that have developed consolidated service

systems would have to change their systems or,

alternatively, accept the existence of several

systems—an outcome they have already spent

considerable time and effort to avoid. Conversely, if Congress allowed each State to select

the agencies that would constitute the linking

system in that State, States that have developed

consolidated service systems could incorporate

the components of the linking system into their

existing service systems.

Community Service Systems That Link Some

People With Dementia to Services

Some local communities have developed

service systems that link at least some people

with dementia to services. Four examples of

such systems are described briefly here and at

greater length in chapter 7. Two of the systems

(the ones in Tulsa, Oklahoma, and Linn County,

Iowa) serve elderly people in general, and two

(those in northern New Hampshire and northwestern Ohio) are dementia-specific. Each of

the systems was developed and is operated by a

consortium of public and private agencies. A

different approach to coordinating services at

the community level currently being developed

in Cleveland, Ohio, is also described.

In 1983, five local agencies that provided

funds for in-home services in Tulsa, Oklahoma,

agreed to coordinate their services by adopting

uniform definitions of services and service

units, pooling their funds, and jointly contracting for the services (556). Building on the

success of that effort, Tulsa established the

Nation’s first public long-term care authority in

1987. The purpose of the authority is to create a

single administrative structure to pool funds for

services and coordinate service delivery. It is

hoped that the authority eventually will coordinate the delivery of all services—acute and

long-term services; in-home, institutional, and

community-based services; and publicly and

privately funded services (557). Participating in

the establishment of the Long-Term Care Management Authority of Tulsa were the local

AAA, the State Medicaid agency, the VA

Medical Center, the city and county of Tulsa,
Chapter 1--Summary and Overview ● 47

and the local United Way agency. The first

project of the authority is a pilot case management project, funded by the Administration on

Aging, to provide ongoing case management for

elderly Medicaid and VA clients.

A different approach to linking elderly people

to services has been in effect since 1981 in Linn

County, Iowa, where a consortium of local

agencies that provide services for elderly people

established the Linn County Case Management

Project. The member agencies include the local

AAA; the local mental health, family service,

United Way, substance abuse, and community

action agencies; two hospitals; three home

health agencies; an adult day center; a senior

center; and two county government agencies.

The member agencies use a uniform assessment

instrument to evaluate elderly clients who come

to them for services. Twice a month, a case

management team composed of representatives

of the member agencies meets to review new

cases, develop care plans, and assign responsibility for managing the care of each elderly

person to one of the member agencies. In the

opinion of its member agencies, the Case

Management Project has reduced fragmentation

and duplication of services in the county and

minimized turf issues among the agencies

(80,463).

A community service system that specifically

links people with dementia to services was

established in 1987 in northern New Hampshire

by a consortium of public and private agencies

that joined to create the “North Country Alzheimer’s Partnership Project. ” Two private,

nonprofit agencies—Tri-County Community Action Agency, Inc. and Crotched Mountain Community Care, Inc.—jointly provide client assessments and ongoing case management for the

project. They also provide information and

referrals and family caregiver education, counseling, and support services. In-home services

are provided by six local home health agencies.

The project provides a single entry point and

coordinated service delivery for people with

dementia (551,614).

The ACCESS Project in northwestern Ohio is

another community service system that specifically links people with dementia to services. The

ACCESS project is operated by a consortium of

10 public and private agencies that have been

receiving funds from the State of Ohio since

1987 to provide case management and in-home

and adult day services for people with dementia

(156,196). Family Service of Northwest Ohio, a

private, nonprofit agency, is the lead agency for

the project. Everyone who receives services

through the ACCESS project receives case

management (196). ACCESS also has a strong

caregiver education program. One component of

the program is educational workshops conducted in various locations by the East Center

for Community Health. The other component is

in-home caregiver education, conducted primarily by a nurse from the Medical College of Ohio

who uses a video cassette recorder and tapes

about Alzheimer’s disease to provide individualized caregiver education about dementia and

services for people with dementia (156).

In Cleveland, Ohio, several agencies that

serve elderly people, people with Alzheimer’s

disease, and other client populations have taken

a different approach to coordinating services:

the agencies have co-located on a common

campus, called the Fairhill Institute for the

Elderly. As of June 1990, more than 10 agencies

had established offices on the campus, including

the Alzheimer’s Center of University Hospitals

of Cleveland, the Joseph M. Foley Elder Health

Center of University Hospitals of Cleveland, the

Geriatric CARE Center of the Case Western

Reserve School of Medicine, the Cleveland

Chapter of the Alzheimer’s Association, the

central Cleveland office of the Benjamin Rose

Institute, the Retired Senior Volunteers Program

of Cleveland, and the administrative offices of

Golden Age Centers of Greater Cleveland. The

concept of the Fairhill Institute is that the

co-location of agencies will allow elderly people, including people with dementia and their

caregivers, easy access to a variety of services

and will simultaneously provide opportunities

for joint educational programs for the agencies’
48 ● Confused Mind, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

staff, encourage joint planning, and minimize

competition and turf issues among the agencies.

Agencies That Might Be Designated To

Constitute a National Linking System for

People With Dementia

At the start of this assessment, OTA identified

11 categories of agencies that Congress could, at

least in theory, designate to constitute a uniform

national system to link people with dementia to

services, if Congress chose to establish a system

composed of a single category of agencies

nationwide. The 11 categories of agencies were

selected because agencies in each category

currently link at least some people with dementia to services; because agencies in each category are discrete entities that could be identified

and funded directly from the Federal level; and

because agencies in each category are currently

part of a nationwide “system” of agencies or

could conceivable be expanded to serve the

entire country. The categories of agencies OTA

identified on the basis of these criteria are:

area agencies on aging (AAAs),

community mental health centers,

community health centers,

Alzheimer’s Association chapters,

Family Survival Project,

States’ regional Alzheimer’s diagnostic

and assessment centers,

hospital-based geriatric assessment programs,

home health agencies,

social health maintenance organizations

(S/HMOs),

On Lok Senior Health Services, and

adult day centers.

Some of these categories of agencies (e.g.,

Alzheimer’s Association chapters and States’

regional Alzheimer’s diagnostic and assessment

centers) serve only people with dementia, and

others serve other people as well. Some of the

categories of agencies (e.g., AAAs, Alzheimer’s

Association chapters, and Family Survival Project) link people to services as one of their

primary functions. Others link people to servPhoto credit: Stan Welt Family Survival Project

Family Survival Project, a San Francisco-based agency,

helps caregivers of brain-impaired adults locate and

arrange services. Most people who contact Family Survival

Project are caring for an individual with dementia.

ices secondarily to their other functions. In

addition to linking people to services, all the

categories of agencies provide some kinds of

services, but the specific services vary from one

category of agencies to another.

OTA analyzed each of the 11 categories of

agencies in terms of its current capability to

function as the basis of a national system to link

people with dementia to services. The analysis

is presented in chapter 8 and is not repeated here.

In chapter 8, each of the 11 categories of

agencies is described briefly. The extent to

which each category of agencies serves people

with dementia and the extent to which each

category of agencies provides public education,

information and referral, outreach, and case

management are discussed. Lastly, the advantages and drawbacks to designating each of the

categories of agencies as the basis of a national

system to link people with dementia to services

are summarized.

The idea of a national linking system composed of one category of agencies nationwide is

appealing because such a system would be easy
Chapter l-Summary and Overview ● 49

to publicize, easy for families and others to

remember, and readily accessible to caregivers

at a distance. On the other hand, OTA’s analysis

of the 11 categories of agencies indicates that no

single category is currently capable of functioning as an effective national system to link people

with dementia to services.

In each of the 11 categories of agencies, OTA

identified one or more examples of agencies that

effectively link people with dementia to services. These agency examples are highlighted in

chapter 8. That there is at least one such agency

example for each category of agencies indicates

that other agencies in the same category could be

modified so that they would also effectively link

people with dementia to services.

As discussed in chapter 8, each of the 11

categories of agencies has positive features that

would contribute to its ability to function as an

effective national system to link people with

dementia to services, but each category of

agencies also has drawbacks. Some of the

categories of agencies generally underserve

elderly people and people with dementia. Other

categories of agencies that do serve people with

dementia focus primarily on family caregivers

and lack procedures for working with people

with dementia who live alone and have no

informal caregiver to help them. For several of

the categories of agencies to add the linking

functions they do not currently provide or

expand the types of clients they serve to include

people with dementia at all levels of severity and

in all stages of their illness would change the

agencies so greatly that their primary functions

would be compromised and the agencies’ unique

contributions to the care of people with dementia and other client populations might be lost.

OTA’s analysis suggests that a consideration

even more important than any drawbacks to

designating any of the specific categories of

agencies, however, is that designating any single

category of agencies to constitute a national

linking system would duplicate and disrupt

existing linking programs and service systems

in many States and localities.

OTHER CONSIDERATIONS IN

CREATING AN EFFECTIVE

LINKING SYSTEM FOR PEOPLE

WITH DEMENTIA

In addition to the components and criteria for

an effective linking system discussed earlier,

there are several other issues that must be

considered in creating a linking system for

people with dementia:

what special procedures may be needed to

link ethnic minority people with dementia

to services;

what procedures will be used to determine

whether individuals are able to make decisions about services themselves, and, if

not, who should make the decisions;

whether the system will concern itself with

the quality and appropriateness of services

to which it links people, and if so, how;

who will be responsible for linking veterans with dementia to VA and non-VA

services; and

how the system will relate to agencies that

might be designated to administer any new,

federally funded, long-term care benefits.

Each of these issues is discussed briefly in

this section. The first four issues are discussed

at greater length in chapters 2, 4, 5, and 6,

respectively. The related policy questions are

whether, in mandating a linking system that

would serve people with dementia, Congress

should require that the system have explicit

procedures for linking ethnic minority people

with dementia to services, making decisions

about services, evaluating and/or assuring the

quality and appropriateness of services to which

it links people, and linking veterans with

dementia to VA and non-VA services, and if so,

what those procedures should be.

Special Problems in Linking Ethnic Minority

People With Dementia to Services

Ethnic minority people constitute about onefifth of the U.S. population. About 12 percent of

all Americans are black; 6 percent are Hispanic,
50 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

including people of Mexican, Puerto Rican,

Cuban, and other Spanish/Hispanic origin; 1.5

percent are Asian American, including people of

Chinese, Hawaiian, Korean, Philippine, Vietnamese, Cambodian, Asian Indian, and Japanese origin; and 0.6 percent are Native Americans, including Eskimo, Aleut, and American

Indian people (492).

The number of people with dementia in ethnic

minority groups is not known. The age-specific

prevalence of Alzheimer’s disease is generally

believed to be the same for ethnic minority

groups as for the population as a whole, but

some differences in the prevalence of other

diseases that cause dementia (e.g., multi-infarct

disease) have been noted. For a variety of

reasons, the percentage of people over age 65 is

lower in ethnic minority groups than in the

population as a whole, but that proportion is

growing rapidly. Between 1970 and 1980, it

increased 40 percent for blacks, 91 percent for

Hispanics, 31 percent for Asian Americans, and

71 percent for Native Americans. This rapid

growth in the age group in which dementia

generally occurs portends rapid increases in the

overall numbers of ethnic minority people with

dementia (864).

There are long-standing concerns about limitations on access to services and underutilization

of all kinds of services by ethnic minority people

(26,153,159,284,432,454,553,845,861). At the

start of this OTA assessment, however, no

research was available on problems that interfere with the process of linking ethnic minority

people with dementia to services. OTA contracted for an exploratory study to identify such

problems (866). The study was conducted in Los

Angeles and San Diego Counties, California,

and involved interviews with black, Hispanic,

Japanese, and American Indian caregivers and

staff members of agencies that work with each

of the groups.

11 When the interviews were

complete, the contractors and OTA staff met

with the interviewers and service providers for

the black, Hispanic, and Japanese caregivers to

discuss the results and policy implications.12 It

was not possible for OTA staff to meet with the

American Indian group within the time frame of

the study.

As discussed in chapter 2, the results of the

exploratory study and discussions with the

interviewers and service providers suggest that

ethnic minority people with dementia and their

caregivers have several special needs with

respect to information about services and funding for services. First, some members of certain

ethnic minority groups do not speak English at

all or well enough to communicate about the

details of service availability and funding for

services. That information must be available to

them in their native language.

Language is not the only problem, however.

The cultural heritage, traditions, customs, and

beliefs of ethnic groups create differences in

how and when members of a group perceive the

problem of dementia, who is expected to be the

caregiver, what that individual or individuals’

responsibilities are, whether formal services are

acceptable, and how and when they are sought

(160,315). Information about dementia and

services for people with dementia must reflect

awareness of those cultural differences. Cultural

values and concerns also are relevant in selecting service providers for ethnic minority people

with dementia. The linking system must be

knowledgeable about agencies’ and individual

providers’ capacity to work with people of

different cultural backgrounds.

Demographic variables, such as income and

educational background, vary both among ethnic minority groups and within a given group.

Information about services for people with

dementia must be tailored to economic and

educational differences as well as to cultural

differences.

Lastly, for cultural, demographic, and historical reasons, many ethnic minority people live in

1~0’E4’s con~ctors intended to include Chinese and Korean people in tbe study but were unsuccessfid in ammging the nwesq intefiews.

lz~e mee~g participants are listed in app. A.
Chapter I-Summary and Overview ● 51

Photo credit: On Lok Senior Health Services

In some communities, there are agencies that serve

primarily one ethnic minority group. On Lok Senior Health

Services in San Francisco serves primarily individuals of

Chinese descent.

communities largely composed of members of

the same group. In these communities, there is

generally an infrastructure of individuals and

associations recognized by the community as

sources of information and assistance with a

wide range of problems (380). There also may

be agencies that primarily serve one ethnic

group. If information about services for people

with dementia is to reach patients and their

caregivers, it must be available through those

individuals, associations, and agencies.

The caregivers interviewed for the exploratory study conducted for OTA in Los Angeles

and San Diego Counties represent only one

segment of the population of caregivers of

ethnic minority people with dementia—

caregivers who are already connected to services of some kind (866). The service providers,

interviewers, and OTA’s contractors pointed out

that many ethnic minority people with dementia

and their caregivers are not connected to services. They said dementia frequently is not

identified in ethnic minority people, sometimes

because families regard patients’ cognitive deficits and behavioral problems, if any, as part of

normal aging, but more often because families

are ashamed of some symptoms of dementia and

hide the patient.

The impression of OTA’s contractors and the

interviewers was that the problem of dementia

is only one of many health and mental health

problems facing service providers in ethnic

minority communities. Available resources are

stretched thin, and agencies are overwhelmed by

many urgent needs. Moreover, some providers

are not knowledgeable about dementia or appropriate services for people with dementia (866).

The most surprising finding of the study

conducted for OTA was the difficulty OTA’s

contractors experienced in locating ethnic minority caregivers of people with dementia who

were willing to be interviewed (866). Many

caregivers who were contacted were not willing

to be interviewed or even to acknowledge that

their relative or friend had dementia. OTA’s

contractors concluded that the difficulty they

encountered in finding caregivers to interview

was similar in some ways to the difficulty a

linking system would have in connecting with

ethnic minority people with dementia and their

caregivers. Likewise, the method that was at

least partially successful for the researchers—

working through the ethnic minority community

infrastructure and ethnic minority agencies—is

probably the best way for a linking system to

connect with those people. Some patients and

their caregivers are not in contact with the

community infrastructure or ethnic minority

agencies, however. Other outreach methods

would be needed to connect with them.
52 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Ethnic minority groups are distinguished by

differences in language (if any), culture, demographic factors, and by people’s awareness that

they are part of the group. Although language

differences usually are not a factor for nonminority people, all Americans have a cultural

background and demographic characteristics

that are likely to affect their perceptions of

dementia, their expectations about caregiving

responsibilities, and their attitudes about the use

of formal services. Clearly, a system to link

people with dementia to services should be

responsive to the diverse perceptions, expectations, and attitudes of both minority and nonminority people with dementia and their caregivers.

Questions About Making Decisions About

Services for People With Dementia

Cognitive deficits associated with dementia

affect the capacity of people with dementia to

make decisions about services for themselves

and raise difficult questions about how their

capacity to make decisions should be determined and how decisions should be made for

people who are not capable of making decisions

for themselves. Those questions often are obscured by the practical difficulties involved in

locating and arranging services in a complex

service environment and by the severe time

constraints within which decisions about services must be made in many instances. Nevertheless, the questions are inherent and unavoidable

in the process of linking people with dementia

to services. Every agency and individual that

arranges services for people with dementia

answers them in some way---either explicitly,

with formal or informal procedures for determining decisionmaking capacity and making

decisions for clients who are not capable of

deciding for themselves, or implicitly, by the

way such decisions are made. The way the

questions are answered involves fundamental

legal rights of the patient and complex legal and

ethical issues. The rights and issues are at stake

whether or not the individuals who make or

participate in the decisions are aware of them.

Most agencies that arrange services for people with dementia do not have explicit procedures either for determining clients’ decisionmaking capacity or for making decisions (or

designating someone to make decisions) for

clients who are not capable of making decisions

for themselves (see ch. 4). Individual case

managers and others who work directly with

clients necessarily act on judgments about their

clients’ decisionmaking capacity and about who

should make decisions for clients that are not

capable of deciding for themselves, but the case

managers and others may not be conscious of

making such judgments or knowledgeable about

the implications of the judgments.

If an agency or individual that arranges

services for people with dementia is unaware of

the legal rights and legal and ethical issues

involved in decisionmaking, those rights and

issues will not receive adequate attention. Having explicit procedures for determining decisionmaking capacity and making decisions for

clients who are not capable of making decisions

for themselves does not guarantee that people

with dementia who are capable of making

decisions always will be given the opportunity

to make them or that the right surrogate

decisionmaker always will be chosen. Having

such procedures does focus attention on the

legal rights and legal and ethical issues at stake

in decisionmaking and makes it more likely that

those rights and issues will be considered in the

way decisions about services are made.

If Congress mandated a national system to

link people with dementia to services, Congress

could require the agencies that constitute the

system to have explicit procedures for determining decisionmaking capacity and making decisions (or designating someone to make decisions) for people who are not capable of making

decisions for themselves. In establishing such

procedures, agencies would have to address

many difficult questions, including:

. What criteria should be used to determine

decisionmaking capacity?
Chapter I-Summary and Overview ● 53

Photo credit: Aizheimer's Association and Rush-Presbyterian/St. Luke’s Medical Center

The process of connecting an individual with dementia to services often involves difficult judgments about whether the individual is

capable of making decisions about services for herself or himself and, if not, who-should make the decisions.

●

●

●

●

●

●

Who should be involved in determining a

person’s decisionmaking capacity?

What procedures should be used to enhance

the decisionmaking capacity of individuals

with dementia, while at the same time

protecting decisionally incapable individuals from potentially harmful decisions?

How should surrogate decisionmakers be

selected?

What procedures should be followed when

a decisionally incapable person’s relatives

disagree about which one of them should

be the surrogate decisionmaker?

How should nonfamily caregivers be involved in decisions about services for the

individual they are caring for?

What criteria should guide surrogate decisions?

. Under what circumstances should the agencies refer an individual for formal guardianship?

One of the most difficult questions faced by

any agency or individual that links people with

dementia to services is the relative importance

that should be given to the needs, preferences,

and best interests of the family v. the patient’s

needs, preferences, and best interests. In 1983

and 1984, a Wisconsin program, Consumer

Directed Services (CDS) Initiative, gave 70

individuals with chronic disabilities, including

some people with dementia, vouchers to purchase services. Each participant--called a‘ ‘consumer’ by the project—had a service coordinator, whose job it was to help the person define
54 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

his or her service needs and select services.

According to the project final report:

One of the first questions all CDS staff had to

grapple with was ‘who is the consumer?” This

question arose when the person in need of long

term support had significantly diminished mental capabilities and when family members and

other natural supporters were deeply involved

in providing direct support to the person.

It was in these instances that CDS staff had

the greatest difficulty in sorting out the interests

of the consumers from. the interests of the

family. Frequently, there were competing interests within the family. It may seem obvious that

the consumer in such a situation is the disabled

person, and that CDS staff should have focused

on facilitating that person’s interests. In doing

extended assessments of people’s situations,

however, CDS staff found that involvement of

the family and other support network members

was so vital an element that their interests could

not be separated from those of the disabled

person (919).

Chapter 4 discusses the question, “who is the

consumer?’ (or “who is the client?”) and

discusses the implications of various answers to

the question with respect to decisions about

services for people with dementia.

Further analysis and debate is needed about

many of the difficult questions about decisionmaking that are inherent in the process of linking

people with dementia to service. In addition,

case managers and others who participate in the

linking process probably would benefit from

training about the legal rights, legal and ethical

issues, and clinical considerations involved in

the way judgments are made about an individual’s decisionmaking capacity and about who

should make decisions for people who are

determined to be decisionally incapable.

Determining the Quality and Appropriateness

of Available Services

The quality and appropriateness of all kinds

of services that may be used for people with

dementia vary greatly from one agency and

individual service provider to another. Because

of their cognitive deficits, people with dementia

are particularly vulnerable to inappropriate or

poor-quality care. They may be unable to

identify or articulate their care needs, to evaluate

the services they receive, to remember and

report instances of poor care, or to be believed.

Families and other informal caregivers realize

that people with dementia are vulnerable, and

they are often extremely concerned about the

quality and appropriateness of services they may

use for their relative or friend with dementia.

Books, pamphlets, and articles about services

for people with dementia suggest that families

and other informal caregivers are responsible for

selecting good services and that information

about the quality and appropriateness of available services-on which they could base their

selection—is available from a variety of sources,

including relatives, fiends, and acquaintances

who have used the services; physicians, nurses,

social workers, and other health care and social

service professionals; professional and provider

associations, the Alzheimer’s Association, caregiver support groups, information and referral

agencies, hospital discharge planners, case managers, long-term care ombudsmen, AAAs and

other aging network agencies, various State and

local government agencies, and government

regulatory programs. OTA’s analysis indicates

that accurate information about the quality and

appropriateness of services is sometimes available from most of these sources but is not

consistently available from any of them (see ch.

5). Moreover, obtaining accurate information

about the quality and appropriateness of service

from those sources may take time and abilities

that people with dementia and some informal

caregivers do not have.

A linking system could take several different

approaches in addressing the difficulties people

have in obtaining accurate information about the

quality and appropriateness of services. It could

refer patients and families to specific sources of

information about quality and appropriateness;

it could provide patients and families with

information about the quality and appropriateness of services it refers people to or arranges for
Chapter 1--Summary and Overview .55

them; it could refer patients and families to or

arrange for them only services that meet certain

standards of quality and appropriateness; or, if

the linking system provides services, it could

assure the quality and appropriateness of those

services directly. All these alternatives presuppose that there are’ accepted criteria for evaluating the quality and appropriateness of services

for people with dementia and that information

about quality and appropriateness is available

somewhere. As discussed in chapter 5, however,

many conceptual and practical difficulties in

defining and evaluating quality and determining

what makes services appropriate for people with

dementia hinder the development of such criteria and information.

In the public debate about services for people

with dementia, concerns about the quality and

appropriateness of services are often considered

secondary to concerns about the insufficient

availability of services. Some health care and

social service professionals, case managers,

government planners, policy analysts, and others whom OTA asked about evaluating the

quality of services for people with dementia

responded that there is often no choice about

services. In many localities, they said, families

are lucky if there are any services available-let

alone services that are appropriate for a person

with dementia and of high quality.

Certainly, the concern about insufficient availability of services is legitimate. On the other

hand, even when services are available, families’ concerns about the quality and appropriateness of services are sometimes the determining

factor in their decisions about whether or not to

use the services. In the view of some families in

some situations, services that are available but

of poor quality or inappropriate for the patient

may just as well not exist.

The best approach to helping families and

others locate good services depends in part on

which agencies are designated to constitute the

linking system. Conversely, it would be unwise

to designate for this purpose agencies that, for

any reason, cannot either provide patients,

families, and others with information about

quality and appropriateness or assure directly

the quality of services it links them to. These

considerations are discussed in chapter 5. Also

discussed there is the unresolved question of the

role of a linking system with respect to the

quality and appropriateness of services to which

it links people with dementia who have no

relative or friend to help them and would not be

capable of using information to evaluate services for themselves, even if the information were

available.

Linking Veterans With Dementia

to VA and Non-VA Services

By the year 2000, there will be 9 million

veterans over age 65, including two-thirds of all

American men over age 65 (854). As the number

of elderly veterans increases, so will the number

of veterans with dementia. The VA estimates

that there will be 600,000 veterans with dementia by the year 2000 (76).

The VA operates the largest health care

system in the United States and currently

provides many of the kinds of services that may

be needed for veterans with dementia. Those

services include acute medical care, diagnostic

and assessment services, nursing home care,

domiciliary care, hospital-based home care,

adult day health care, institutional respite care,

and some specialized services for individuals

with dementia. In the course of this assessment,

one OTA staff member visited several VA

medical centers that are providing specialized

services for veterans with dementia, some of

which are described in chapter 6.

Not all health care and health-related services

that are needed for veterans with dementia are

available through the VA, however. Some

services, such as in-home respite care are not

provided by the VA at all. Other services are

provided only at certain VA medical centers. As

of 1989, for example, 100 of the 172 VA

medical centers provided institutional respite

care, and only 15 of the 172 VA medical centers

provided adult day health care (837). Moreover,

most VA health care and health-related services
56 ● Confused Miles, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

are provided at VA medical centers. Since the

172 VA medical centers are not uniformly

distributed across the country, and since some

have very large catchment areas, veterans and

their caregivers may have to travel long distances to obtain VA services, and some may not

be able to obtain the services (481,662,724,823).

Lastly, many VA services are furnished on a

“space available’ basis, so that even if the

services a veteran needs are provided by a VA

medical center the veteran can reach, he still

may not receive the services because the programs that provide them are full.

The eligibility criteria for VA services also

limit access to the services for veterans with

dementia. The VA has complex eligibility

criteria that give highest priority for VA services

to veterans with service-connected disabilities

and veterans with low income (see ch. 6). Since

most diseases that cause dementia occur late in

an individual’s life, long after he or she is

discharged from military service, dementia is

seldom considered a service-connected disability. Some veterans with dementia have another

service-connected disability or have low income, but veterans with dementia who do not

have a service-connected disability or low

income generally have low priority for VA

services. As a result, their chances of receiving

VA services are highly dependent on whether

there is “space available” in the programs that

provide the services they need.

Some people believe the VA should provide

all the health care and health-related services

that are needed for all veterans, including

veterans with dementia. Others believe that for

financial and other reasons, the VA should not

or cannot provide all needed services for all

veterans. This OTA report does not address the

questions of what services the VA should

provide or for whom. It focuses instead on the

processes by which veterans with dementia are

(or are not) linked to the VA services for which

they are eligible and to non-VA providers for

services they need but cannot obtain through the

VA. The report assumes that, although the

amount and types of services provided by the

VA and the eligibility criteria for VA services

will undoubtedly change from time to time, it is

unlikely that the VA will ever provide all the

services that may be required by all veterans. As

a result, veterans with dementia will need to be

linked to both VA and non-VA services.

Problems of several kinds interfere with the

process by which veterans are linked to VA

services. As mentioned earlier, the eligibility

criteria for VA services are complex. Veterans

and their families often do not understand the

criteria and may assume the veteran is not

eligible for services when he is, or vice versa.

They also may not be aware of potentially

beneficial services provided by the VA. Many

non-VA agencies and individual professionals

and service providers who work with people

with dementia also do not understand the VA’s

eligibility criteria and may not be knowledgeable about VA services, so they cannot give

veterans and their families accurate information

about the services, and they may fail to refer

individuals to the VA who would be eligible for

services. As a result, some veterans and their

families never apply to the VA for services, even

though the veteran is potentially eligible. Interestingly, some caregivers of veterans with

dementia who were receiving good care from

the VA told OTA staff that they had learned

about the services completely “by accident”

(see box 6-C inch. 6).

Until recently, the VA itself has not been fully

aware of the kinds of services it is providing for

veterans with dementia. In 1988, the VA conducted a survey of all 172 VA medical centers

to find out what programs and services were

available for veterans with dementia (76). The

results of the survey have been compiled into a

directory for internal VA use in referring

veterans and their caregivers to services and

responding to public inquiries about the location

of services for veterans with dementia across the

country. The directory cannot solve the problem

of determining whether an individual veteran

with dementia will actually receive VA services,

however, because that determination depends to
Chapter 1--Summary and Overview .57

a great extent on space availability at the time

the veteran needs the services.

Other problems interfere with the process by

which veterans with dementia are linked to

non-VA services. According to several sources,

the most difficult problem encountered by the

VA in linking veterans to non-VA services is the

complexity and fragmentation of non-VA services at the community level—the same problem

encountered by anyone who tries to locate and

arrange services in many communities (481,854,

860). Each VA medical center’s Social Work

Service has a community services coordinator

whose job is to identify non-VA services in the

community and to coordinate VA and non-VA

services. The VA has also developed a software

system to help the Social Work Service at each

VA medical center maintain an up-to-date list of

non-VA services. The community services coordinator position is staffed only half-time at

many VA medical centers, however, and, as

noted throughout this OTA report, the complexity and fragmentation of non-VA services in

many communities make it difficult for anyone

to maintain an accurate, comprehensive resource list. As a result, some VA personnel who

refer veterans with dementia to non-VA services

may not be aware of potentially helpful services

in the community.

The Social Work Service at each VA medical

center has primary responsibility for linking

veterans to non-VA services through its hospital

discharge planning and case management functions (see ch. 6). Although VA hospital discharge planning and case management are

undoubtedly effective in connecting many veterans to non-VA services, there are two groups

of veterans who may not receive the assistance

they need:

● VA hospital discharge planning and case

management are provided primarily, although not exclusively, for veterans who

are already receiving or are eligible to

receive VA services, but many veterans

with dementia are unlikely to receive or to

be eligible for VA services and therefore

may not receive help from the VA in

finding non-VA services, and

VA case management generally is more

readily available for veterans who live near

a VA medical center; some VA medical

centers have very large catchment areas,

and many veterans in their catchment areas

live far from the center; as a result, these

veterans may not receive help from the VA

in finding non-VA services (236).

Without effective methods for linking veterans with dementia to both VA and non-VA

services, some, and probably many, veterans

with dementia will not receive the services they

need. As the number of veterans with dementia

increases in the next decade, the demand for

services for these veterans and the need for

effective methods of linking for them to services

will also increase. The policy issue discussed at

the end of this chapter is the appropriate division

of responsibility between the VA and a non-VA

linking system for connecting veterans with

dementia to services.

Because of the complexity of the eligibility

criteria for VA services, especially as they

interact with the factor of space availability,

only the VA can finally link veterans to VA

services. The non-VA linking system would

have to be knowledgeable about VA services

and eligibility requirements, however, in order

to know when to refer veterans with dementia to

the VA.

With regard to linking veterans with dementia

to non-VA services, there are two options. If a

national linking system were established, it

could assume the primary responsibility for

linking veterans with dementia to non-VA

services. Alternatively, the VA could assume

the primary responsibility for linking veterans

with dementia to non-VA services. These options are discussed at the end of this chapter.

Lastly, it is clear that the VA is an important

provider of services for some, and perhaps

many, veterans with dementia. For that reason,

the VA must be involved in the planning and

operation of a national system to link people
58 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

with dementia to services regardless of the

specific responsibility it has for linking veterans

with dementia to non-VA services.

The Relationship of the Linking System to

Congressional Proposals for New Long-Term

Care Benefits

As mentioned at the beginning of this chapter,

several bills have been introduced in Congress

in 1988, 1989, and 1990 to expand Federal

funding for a variety of long-term care services.

Provisions in most of the bills indicate that the

agencies designated to administer the new

benefits also would link people to services. This

report does not evaluate any of the legislative

proposals specifically. Some general statements

can be made, however, about differences between the linking system discussed in this report

and the linking functions that would be authorized by many of the proposed bills. First, to

OTA’s knowledge, none of the proposed bills

include the provision of public education, information and referral, or outreach—three of the

four components that OTA concludes are essential for an effective system to link people with

dementia to services. Second, the case management that is part of the proposed bills would only

be available to people who meet the eligibility

requirements for the services to be authorized by

the bills—usually impairments in two or more

activities of daily living (ADLs). Presumably,

anyone who received the services authorized by

the proposed bills also would receive case

management, since case managers would administer the services. In contrast, the case

management that is a component of the linking

system discussed in this report would be available to anyone who needed it, regardless of the

severity of their impairments or their eligibility

for any particular service. No one would be

required, however, to receive case management

as a condition for receiving any other assistance

from the linking system.

The linking system described in this report

probably would be available to more people than

the number who would receive long-term care

services and case management through the

proposed bills, but the linking system would not

provide any new funding for services. In contrast, the proposed bills would make available

funding for many new long-term care services

for people who met the eligibility requirements

in the bills. The proposed bills would not

necessarily provide: 1) information and referral

for people in the early stages of dementia when

referrals for accurate medical diagnosis, and

legal and financial counseling are particularly

important; 2) referrals for services that are not

included in the bills; or 3) outreach to isolated

people with dementia and caregivers who may

need services but are unlikely to contact a

long-term care agency on their own.

Combining the linking system discussed in

this report and the expanded long-term care

services delineated in the proposed bills would

create a comprehensive long-term care system

that would both cost more and help more people

than either approach by itself. Combining the

two approaches would have implications for

several of the policy options discussed at the end

of this chapter. First, the combined system

necessarily would serve anyone who needed

long-term care, not just people with dementia,

but it still could be dementia-friendly and

dementia-capable. Secondly, the agencies that

administered the combined system necessarily

would allocate services and funding for services. Lastly, some of the categories of agencies

identified by OTA as potentially capable of

constituting a national linking system would not

be capable of administering the combined system.

Other Considerations

Six questions that are relevant to establishing

an effective linking system for people with

dementia but have not been discussed in this

chapter are briefly reviewed here. The first is the

cost of a linking system. That cost would vary

greatly, depending on which agencies constitute

the system and many other factors. The available information about the cost of some State

linking programs is presented in chapter 7.

Chapter 8 includes the available information
Chapter --Summary and Overview ● 59

about funding for the 11 categories of agencies

discussed there. The figures are not necessarily

comparable, however, because the linking functions and other services provided by each of the

categories of agencies differ so greatly. Further

analysis of the cost of a linking system will be

needed once decisions have been made about

which agencies will constitute the system,

whether the system will serve people with

dementia exclusively or other people as well,

and other issues.

The second question is the role of computer

technologies in an effective linking system.

Clearly, computer technologies make it easier to

maintain an accurate list of services and sources

of funding for service in the complex, changing

service environments that exist in many communities. The difficulty of maintaining such a list

is due not to lack of computer technologies, but

rather to lack of agency resources committed to

updating the list, turf issues that interfere with

various agencies’ and individuals’ willingness

to cooperate in developing and maintaining the

list, and problems in defining and categorizing

services in a way that is relevant to the needs of

patients and families. These issues are discussed

in chapter 2. The computerized databases being

used by some agencies and organizations that

link people with dementia to services are

discussed in chapters 7 and 8.

The third question is who the case manager

should be. Virtually all health care, social

service, and other human service professionals

and service providers manage their clients in

some sense. Nurses and social workers are the

case managers in many agencies that provide the

kinds of health care, long-term care, and social

services that may be needed for people with

dementia. State agencies that allocate long-term

care services often employ as case managers

individuals with a college, but not a professional

degree in a human service field (47).

Differences of opinion about who should be

the case manager usually focus on social workers v. nurses and involve competing claims

about the knowledge and skills that case managers need and which professional group has that

expertise (23,31 ,46,204,265,382,558,647). Those

differences of opinion sometimes result in

intense turf conflicts. In many agencies, however, social workers and nurses work together

constructively and comfortably, learning from

each other and relying on each other’s special

knowledge and skills. Many commentators,

including some of those who have noted the turf

issues between social workers and nurses, have

concluded that both are needed for effective case

management (23,31 ,409,506). That seems to be

a wise conclusion. All social workers and nurses

are not necessarily knowledgeable about dementia or skilled in working with people with

dementia. That knowledge and those skills

probably are more important in creating an

effective linking system than any consistent

differences between nurses and social workers

as case managers.

The fourth question concerns case management standards. The American Nurses’ Association, the National Association of Social Workers, the National Council on the Aging, at least

one State, some State Units on Aging, and other

organizations and individuals have formulated

case (or ‘‘care’ management standards

(22,32,572,581). OTA has not compared those

standards systematically, but a brief review

indicates that they are based on similar philosophies, views about the role and functions of the

case manager, and concerns about clients’

rights. The requirements for a national linking

system might incorporate some of the core

features of those standards.

Fifth is the question of the appropriate role of

physicians in linking people with dementia to

services. As discussed in chapter 2, families and

other informal caregivers of people with dementia often complain that physicians are not

knowledgeable about services for people with

dementia and do not refer people with dementia

to appropriate services (125,257,412,479,497,

500,531,599,934). On the other hand, anecdotal

evidence suggests that families and other informal caregivers may be more likely to use

services if they have been referred to the
60 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

services by a physician (291,931). The importance of involving physicians in the linking

people with dementia to services and the difficulties involved in doing so, including constraints on physicians’ time, are discussed in

chapter 2.

Some commentators have suggested that

people with dementia and their caregivers might

be more likely to follow through on recommendations about services if the services were

actually prescribed by a physician (931,944).

The Alzheimer’s Diagnostic and Treatment

Center at the University of California/Davis

Medical Center has recently developed a prescription pad for this purpose to be used by

physicians in the center’s service area (see

figure 1-3). No information is available yet

about the effectiveness of this approach.

A final question concerns family control and

the role of families in relation to a linking

system. As noted in chapter 3, families of older

people frequently perform various linking functions themselves, acting as an intermediary

between the older person and paid service

providers (85,92,1 10,467,477,753,778). In 1988,

a study was conducted for OTA in Pennsylvania

to explore the question of what is special about

case management for people with dementia

(934). 13 Family caregivers of people with dementia who were interviewed for that study

expressed a strong desire to have control over

decisions about services provided for their

relative with dementia. Moreover, OTA’s contractors noted that the caregivers often seemed

to perceive themselves, rather than the AAA

case manager who arranged services for them, as

the case manager. OTA does not know whether

families of people with dementia are more likely

than families of nondemented elderly or disabled people to want to retain control over

decisions about services for their impaired

relative. In any case, allowing families to retain

that control to the greatest degree possible

would seem to be a worthwhile objective for a

Photo credit: M.P. Cordero-Aranda

Some, and perhaps many, families of individuals with

dementia perceive themselves as the case manager for

their relative with dementia and want to retain control of

decisions about services for the person.

linking system. Chapter 3 discussed the role of

families as ‘‘co-case managers’ or ‘‘coclients of a linking system and other issues that

pertain to the relationship between families and

a linking system.

CONCLUSION

Families and others who are caring for a

person with dementia often experience great

difficulty locating and arranging appropriate

services for the person. To some degree, this

problem reflects the lack of sufficient services in

many communities, the lack of adequate funding for services, the poor quality of some

available services, and the lack of training for

service providers. These four issues were the

focus of OTA’s 1987 report, Losing a Million

Minds: Confronting the Tragedy of Alzheimer’s

and Other Dementias, and remain to be resolved

in many, if not all, areas of the country.

The difficulty families and others have in

locating and arranging appropriate services also

Is’rhe re~ts of me smdy ~nducted for OTA in Pennsylvania are discussed in ch. 3. A complete report on the study is available tim the Natioti

TechnicaJ Jnforrnation Semice in Sprin@leld, VA (see app. A).
Chapter 1--Summary and Overview . 61

Figure 1-3-A Prescription Form for Use by Physicians in Referring Alzheimer’s Patients

to Community Services, 1990

RX FOR CAREGIVERS IN 916 AREA

Name Dat e

Information & Referra l

[]Del Oro RRC 971-0893

[]Alzheimer's Aid Society 448-700 1

[]Sutter Senior Help Line 733-388 8

[]Other Community Info 442-4995

Caregiver Counseling

[]Del Oro RR C 971-0893

[]Mental Health Assoc . 456-2071

[]Alzheimer’s Aid/Support

Groups 448-7001

[]Othe r - Community privat e

practitioners - psychologists ,

psychiatrists , family counselors,

pastors, etc. (no specifi c

referral )

g & Educatio n

[]Del Oro RRC 971-0893

[]Info from an array of providers

available at this phone number.

i t e

[]Del Oro RRC 971-0893

[]Sutter Davis Guest

Weekend 756-6440

[]Other - day care, in-home: fee fo r

service unless skilled healt h

care needed and Medi-Cal or

Medicare pays (no specifi c

referral )

[]MSSP (Medi-Cal) 734-5432

[]Senior Connection (pvt) 972-111 4

[]Othe r - private practitioners an d

home health agencies (no specifi c

referral )

e Healt h Care

[]In-Home Support Services 732-307 7

[]Othe r - Home health agencies &

home nursing - fee for service s

(no specific referral )

t Day Healt h Care

[]Robertson ADHC 452-2529

[]Yolo ADHC/CASA 666-8828

[]Health for All ADHC/RC 885-2655

(Auburn)

UCD/ADDTC 4/27/90

Residentia l Ca r e

[]Licensin g 973-3846

[]Ombudsman 366-5554

Skill ed Nursin q Facil itie s

[]Licensin g 445-3281

[]Ombudsman 366-5554

[]Special care facilitie s

(though others may als o

be appropriate) :

Sutter Oaks Alz. Ctr 922-7177

Hillhaven Fair Oak s 944-4312

Homestead - Fair Oaks 965-466 3

Greenhaven Country

Plac e 393-2550

a l Eligibilit y

[]Medi-Ca l 395-4551

[]Social Securit y

(Medicare, SSI) 551-1000

[]Othe r - Fee for service -

financial planning (no specifi c

referral )

Plannin g

[]Del Oro RRC 971-0893

[]Conservatorshi p 732-3827

[]Other - probate, elder la w

practitioners (no specifi c

referral )

erment

[]Geropsych Network 732-9490

[]Adult Protective Svc s 732-3077

Othe r

[]Medic-Alert 1-800-ID-ALERT

[]Nat’1 Alzheimer’s

Assoc . 1-800-621-037 9

[]UCD/ADDTC 734-5496

[]UCD Brain Bank 734-2885

***** **** *

Take Care of Yourself! !

Phone

SOURCE: Alzheimer’s Diagnostic and Treatment Center, UniversityofCalifornia/Davis Medical Center, Sacramento, CA,1990.
62 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

reflects several other factors, including the

complexity and fragmentation of services at the

community level, the difficulty of obtaining

accurate information about available services

and funding for services, the difficulty of

coordinating the services of multiple providers,

and the characteristics, feelings, and perceptions

of some people with dementia and some caregivers that make them reluctant to use services,

unable to define their service needs, or unable to

arrange services for themselves. Even if sufficient services were available everywhere, these

factors would still limit access to appropriate

care for some, and perhaps many, people with

dementia.

Based on an analysis of the characteristics and

care needs of people with dementia, their

informal caregivers (if they have any), and the

service environment, OTA developed a framework for an effective system to link people with

dementia to services. The essential components

of the system (i.e., public education, information and referral, outreach, and case management), additional criteria, and other considerations in the development of the system have

been discussed in this chapter and are analyzed

in greater detail in other parts of the report.

Although the need for an effective system to

link people with dementia to services is clear,

establishing such a system will be difficult,

largely because of turf issues. Many public and

private agencies, organizations, individual professionals, and service providers currently link

some people with dementia to services. With a

few exceptions, each of these agencies, organizations, and individuals considers itself the right

one to perform that function. Moreover, many of

them propose to solve the problem of locating

and arranging services for people with dementia

by expanding their role in the area. Some of

them are unaware of the efforts of the others to

link people with dementia to services. Those

that are aware of the others’ efforts tend to

regard those efforts, or at least any expansion of

those efforts, as “duplication.’

OTA was surprised by the large number of

agencies, organizations, and individuals that

link at least some people with dementia to

services. That large number is good in the sense

that there are many places to which families and

others can turn for help. On the other hand, in

many communities, the large number of agencies, organizations, and individuals that link

people with dementia to services probably

results in further complication and fragmentation of the service environment. Since many

agencies, organizations, and individuals that

link people with dementia to services do not

have an accurate list of services and sources of

funding for services, some patients and families

receive wrong information or only partial information about available services and funding.

Establishing an effective system to link people

with dementia to services will require a consolidation of the linking functions now provided by

many agencies, organizations, and individuals.

Some people who reviewed this report for

OTA pointed out that it would be easier to

establish a national system to link people with

dementia to services if the system did not have

to include case management, because many of

the agencies and organizations that currently

link some people with dementia to services

provide public education and information and

referrals but generally do not provide case

management. Although it is undoubtedly true

that a national linking system could be established more easily if it did not have to include

case management, OTA’s analysis indicates that

some people with dementia would not be served

effectively by such a system. People with

dementia who are likely to need case management are those who live alone and have no

relative or friend to help them, those who have

an informal caregiver who is reluctant to use

needed services or unable to arrange services,

and those who need services from several

different providers. OTA’s analysis of available

data indicates that at least 10 percent of people

with dementia live alone and have no relative or

friend to help them. These individuals and other

individuals with dementia whose caregivers are
Chapter 1--Summary and Overview . 63

reluctant to use needed services or unable to

arrange services will not be served effectively

by a linking system that provides only public

education and information and referral.

Many agencies that provide services of various kinds for people with dementia provide case

management in conjunction with the services—

i.e., service-centered case management. An

individual who is receiving case management

from such an agency generally would not need

long-term case management from the linking

system. For such an individual, the linking

system might provide only short-term case

management to connect the individual to the

agency originally and then be available to

provide further assistance, if necessary, later on.

For other individuals with dementia who need

services provided by agencies that do not

provide case management or services provided

by multiple agencies and individuals, the linking

system may have to provide ongoing case

management.

A linking system is needed partly because of

the complexity and fragmentation of services. If

agencies’ rules about whom they serve and what

they provide were simpler and more flexible and

the services of different agencies were better

coordinated, more families and others would be

able to locate and arrange appropriate services

themselves.

The complexity and fragmentation of services

at the community level originates to a great

extent in the federally funded programs that

provide or pay for services-specifically in the

detailed and extensive regulations that define

not only what services are covered and for

whom, but also who may provide them, for how

long, and in what setting. Congress repeatedly

has mandated coordination among the Federal,

State, and local agencies that administer these

federally funded programs. Although these mandates sometimes lead to meaningful coordination, the Federal Government’s own regulations

often interfere with coordination at all levels of

government.

In addition to establishing a system to link

people with dementia to services, Congress

could begin to identify and reduce the barriers to

coordination and integration of services caused

by Federal law and Federal regulations. This

might ultimately result in consolidation of

various Federal programs that fund health care,

mental health, social, and other services and

services for elderly and disabled people. In the

short term, Congress could allow States and

local governments greater flexibility to pool

funds and consolidate services from different

Federal programs. New federally funded services could be designed with explicit recognition

of the complexity and fragmentation of existing

services, and new regulations could be written in

away that will reduce, not increase this problem.

POLICY ISSUES AND OPTIONS

This OTA report discusses the need for an

effective system to link people with dementia to

services and presents a framework, including

essential components and criteria, for such a

system. Seven important policy issues with

respect to the system remain to be resolved.

Those policy issues and the options for congressional action are discussed in this section.

ISSUE 1: Should the linking system serve

people with dementia exclusively or should it

serve people with dementia and people with

other diseases and conditions as well?

Option A: Congress could mandate the establishment of a linking system that would serve

people with dementia exclusively.

Option B: Congress could mandate the establishment of a linking system that would serve

people with dementia and people with other

diseases and conditions as well.

This report identifies many special problems

and concerns in linking people with dementia to

appropriate services. To be effective, a linking

system must be both dementia-friendly (i.e.,

responsive to people with dementia) and dementiacapable (i.e., staffed by people who are skilled

in working with people with dementia and their

caregivers, knowledgeable about the kinds of
64 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

services that may help them, and aware of which

agencies and individuals provide such services

in the community). Some people believe that

only a system that is dementia-specific could

meet those requirements. They advocate the

establishment of a linking system that serves

people with dementia exclusively (option A).

Other people believe that individuals with

dementia and their caregivers would be best

served by a linking system that is not dementiaspecific and that such a system could be both

dementia-friendly and dementia-capable. One

reason they advocate a linking system that is not

dementia-specific (option B) is that some, and

perhaps many, people with dementia are not

identified as ‘‘people with dementia’ by their

families, physicians, or others. Probably this is

most likely to occur if the individual has a

serious physical condition in addition to his or

her dementia. Families and others who do not

identify the person they are caring for as a

“person with dementia’ are unlikely to contact

a dementia-specific linking system for help in

finding services. A second reason that some

people advocate a linking system that is not

dementia-specific is to avoid further fragmentation of the service environment by the introduction of another disease- or condition-specific

element. Almost all the members of the advisory

panel for this OTA assessment favored option B.

ISSUE 2: Should the Federal Government

designate a single category of agencies to

constitute the linking system nationwide or

should each State be mandated to designate

the agencies that will make up the system in

that State?

Option A: Congress could designate a single

category of agencies to constitute the linking

system nationwide or instruct the U.S. Department of Health and Human Services to do so.

Option B: Congress could mandate that each

State designate the agencies that would make up

the linking system in that State. Under Option B:

1. States could be mandated to designate a

single category of agencies to make up the

linking system in that State.

2. States could be authorized to designate

either a single category of agencies, different types of agencies, or consortia of

agencies in different localities, at their

discretion.

As discussed earlier, OTA identified 11

categories of agencies that might be designated

to perform the linking functions nationwide.

They are AAA’s, community mental health

centers, community health centers, Alzheimer’s

Association chapters, Family Survival Project,

States’ regional Alzheimer’ diagnostic and assessment centers, hospital-based geriatric assessment programs, home health agencies, social health maintenance organizations, On Lok

Senior Health Services, and adult day centers.

Under Option A, Congress would designate one

of those categories of agencies to constitute the

linking system.

Designating a single category of agencies to

constitute the linking system nationwide would

make the system easy to publicize, easy for

families and others to remember, and readily

accessible to long-distance caregivers. OTA’s

analysis indicates, however, that none of the 11

categories of agencies is currently capable of

constituting an effective national linking system. Each of the 11 categories of agencies has

positive features that would contribute to its

ability to function in that capacity, but each

category of agencies also has drawbacks. Chapter 8 discusses the modifications that would be

needed in each of the categories of agencies to

make it an effective national system to link

people with dementia to services.

By designating a single category of agencies

to constitute the linking system nationwide,

Congress would risk duplicating or disrupting

existing State linking programs and State and

community service systems. Moreover, there

are significant variations from State to State and

in different localities in the capacity of agencies

of the same type (e.g., AAAs) to perform the

four linking functions effectively. For these

reasons, many people, including almost all the
Chapter 1--Summary and Overview ● 65

members of the advisory panel for this OTA

study, believe that Congress should mandate

that each State designate the agencies that will

make up the linking system in that State (option

B). One possible drawback to this option is that

for political or other reasons, some States might

designate agencies that would not create an

effective linking system.

It should be noted that even if option B were

chosen, the agencies designated by the States

would have to be identifiable in some uniform

way nationally, either by a uniform logo,

telephone number, or some other method, so

that people would know where to go for help in

locating and arranging services.

ISSUE 3: Should the agencies that constitute the linking system also provide services?

Option A: Congress could require that the

system be composed of agencies that do not

provide any services.

Option B: Congress could require that the

system be composed of agencies that do not

provide certain services.

Option C: Congress could allow the system to

be composed of agencies that provide services.

Some people believe that the same agency

should not both link people to services and

provide services because the agency may have

a financial incentive to refer clients its own

services, even if more appropriate services are

available elsewhere. Other people believe that

the linking functions are often performed most

effectively by an agency that is also providing

services and that patients and families prefer to

have a service provider refer them to or help

them locate and arrange other services.

The debate about whether an agency that links

people to services should also provide services

seldom specifies which services. Virtually all

the agencies OTA studied offer at least some of

the services listed in table 1-2. Option A would

eliminate all those agencies—many of which

effectively link some people with dementia to

services-from consideration as agencies that

could constitute the linking system.

Option B would specify which services

agencies that constitute the linking system

should not provide. Congress might decide, for

example, that agencies that provide nursing

home or adult day care should not be part of the

linking system, whereas agencies that provide

diagnosis or caregiver education and training,

could be part of the linking system. On the other

hand, Congress could decide that agencies that

provide nursing home or adult day care could

constitute the linking system, but that diagnosis

and caregiver education and training should not

be provided by agencies that constitute the

linking system. Option C would allow agencies

that provide any services to constitute the

linking system.

In thinking about these options, it is helpful to

distinguish between linking functions that are

service-centered v. linking functions that are

comprehensive. Service-centered case management connects people to services in conjunction

with providing services for them. Comprehensive case management takes place independent

of the provision of any particular services (657).

Some agencies that provide services furnish

only service-centered case management: that is,

they generally provide case management only

for people who are receiving or expected to

receive their services. One of the main reasons

why such agencies provide service-centered

case management is that public and private

programs that pay for services usually do not

pay for case management for people who are not

receiving or expected to receive services.

Agencies that provide services can provide

comprehensive case management (and presumably other linking functions), as shown by the

home health care and mental health agencies

that provided comprehensive case management

for the National Channeling Demonstration

Project (30). The experience of the National

Channeling Demonstration Project indicates

that case managers in agencies that provide

services can be effectively insulated from finan-
66 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

cial pressures to refer clients to services of their

own agencies rather than more appropriate

service of other agencies (30).

ISSUE 4: Should the agencies that constitute the linking system allocate services and

funding for services?

Option A: Congress could mandate that the

agencies that constitute the linking system be

prohibited from allocating services or finding

f or services.

Option B: Congress could mandate that the

agencies that constitute the linking system be

permitted to allocate services and finding for

services.

Option C: Congress could mandate that the

agencies that constitute the linking system be

required to allocate services and funding for

services.

Some agencies that link people with dementia

to services also allocate services and funding for

services. As noted earlier, some people are

opposed to having the same agency or individual

case manager perform both functions because

they believe the agency and the case manager

will not advocate for clients and may restrict

clients’ access to needed services in order to

limit the cost to the agency of services provided

for them. They would advocate option A. Other

people believe that having the same agency

perform both functions creates an efficient

service delivery system and that clients are

much more likely to receive services when an

agency or case manager has services and funding to allocate than when the agency or case

manager simply arranges any available services,

They would advocate option C. If the linking

system were to be combined with expanded

long-term care benefits, the combined system

would be administered by the same agencies at

the community level, and option C would have

to be chosen. Option B would allow whomever

designates the agencies that constitute the system to designate either type of agency.

ISSUE 5: Should the agencies that constitute the linking system be required to have

explicit procedures for determining their

clients’ decisionmaking capacity and making

decisions about services for clients who are

incapable of making decisions for themselves?

Option A: Congress could require the agencies that constitute the linking system to have

explicit procedures for determining their clients’ decisionmaking capacity and making decisions about services for clients who are incapable of making decisions for themselves.

Option B: Congress could make no requirements with respect to procedures for determining clients’ decisionmaking capacity and

making decisions about services for clients who

are incapable of making decisions for themselves.

Option C: Congress could direct the U.S.

Department of Health and Human Services to

fund research to develop model agency procedures for determining clients’ decisionmaking

capacity and making decisions about services

for clients who are incapable of making decisions for themselves.

Option D: Congress could direct the U.S.

Department of Health and Human Services to

develop methods for training case managers

and others about the legal and ethical issues

involved in the way decisions about services are

made and procedures for determining clients’

decisionmaking capacity and making decisions

about services for clients who are incapable of

making decisions for themselves.

Option E: Congress could direct the U.S.

Department of Health and Human Services to

organize and support forums for analysis and

debate about unresolved issues in how decisions

about services for people with dementia are and

should be made.

Fundamental legal rights and complex legal

and ethical issues are involved in the way

decisions about services for people with dementia are made. Yet most agencies that link people

with dementia to services do not have explicit

procedures for how those decisions should be
Chapter I-Summary and Overview . 67

made. Chapter 4 emphasizes the need for

explicit agency procedures for determining

clients’ decisionmaking capacity and making

decisions (or designating someone to make

decisions) for people who are not capable of

making decisions for themselves. Federal legislation to create a linking system for people with

dementia could require that any agency that is

part of the system have such procedures (option

A). Option B would not require explicit procedures. Option C would direct the U.S. Department of Health and Human Services to fund

research to develop model procedures.

Some case managers and others who participate in making decisions about services for

people with dementia are not knowledgeable

about the legal and ethical issues involved in

how these decisions are made. Option D would

direct the U.S. Department of Health and

Human Services to develop appropriate methods for training case managers and others about

these issues.

Some unresolved questions about decisionmaking practices, particularly the question of

the relative weight to be given to the needs,

preferences, and interests of the patient v. the

family in decisions about services, require

further analysis (see ch. 4). Option E would

require the U.S. Department of Health and

Human Services to organize and support forums

for analysis and debate about those issues.

ISSUE 6: Should the linking system concern itself with the quality of services to

which it links people with dementia, and if so,

how?

Option A: Congress could mandate that the

system not concern itself with the quality of

services to which it refers people, leaving that

issue to clients, families, and others.

Option B: Congress could mandate that the

system inform clients and their families about

what, if any, information it will provide about

the quality of available services.

Option C: Congress could mandate that the

system inform clients and their families about

which agencies and individuals that provide

services are licensed, certified, and/or accredited.

Option D: Congress could mandate that the

system refer clients only to licensed, certified,

and/or accredited agencies or individual service

providers.

Option E: Congress

system provide clients

available information

services.

Option F: Congress

could mandate that the

and their families any

about the quality of

could mandate that the

system control the quality of services to which it

refers clients by contracting with providers that

will meet certain standards and monitoring

provider compliance with the standards.

Option G: Congress could require the U.S.

Department of Health and Human Services to

study the legal issues involved in providing

information about the quality of services to

clients of a system that links people to services.

This study could determine whether there is a

difference in liability incurred by a public v.

private agency that provides such information

and whether the form or source of the information affects liability.

Option H: Congress could immunize the

linking system from legal liability for good faith

efforts to disseminate information about the

quality of services.

As discussed in chapter 5, accurate information about the quality and appropriateness of

services is not consistently available to families

and others who are selecting services for people

with dementia. For a variety of reasons discussed in that chapter, agencies and individual

health care and social service professionals and

others who refer people with dementia to

services and select and arrange services for them

frequently do not and/or cannot either provide

information about the quality of the services or

select services on the basis of quality. Option A

would mandate that the linking system not

concern itself with the quality and appropriateness of services it refers people to or arranges for
68 ● Confiused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

them. Options B through F suggest various ways

in which a linking system could address the

question of the quality and appropriateness of

services. Option G would require the Department of Health and Human Services to study the

legal issues that arise when a linking system

provides its clients with information about the

quality and appropriateness of services. Option

H would immunize the linking system from

legal liability for measures it takes to inform its

clients about the quality and appropriateness of

services. Options B-H are not mutually exclusive.

ISSUE 7: Who should have responsibility

for linking veterans with dementia to services?

Option A: Congress could inundate that the

VA have primary responsibility for linking

veterans with dementia to non-VA services.

Option B: Congress could mandate that the

non-VA linking system have primary responsibility for linking veterans with dementia to

non-VA services.

The VA provides many services that may be

helpful for veterans with dementia. The complexity of the eligibility criteria for VA services,

especially as they interact with the factor of

space availability, means that only the VA can

finally link veterans with dementia to VA

services however. A non-VA linking system

could not perform that function effectively, and

this OTA report does not consider that possibility.

Since not all services that are needed for

veterans with dementia are available through the

VA, and since some veterans with dementia are

not eligible for VA services, many veterans with

dementia need help in locating and arranging

non-VA services. Option A would assign the

VA primary responsibility for linking veterans

with dementia to non-VA services. Option A

option would require the VA, probably through

the Social Work Service at each VA medical

center, to provide information and referrals to

non-VA services and assistance in locating and

arranging non-VA services for all veterans with

dementia, including veterans who are not receiving VA services.

 Since the VA Social Work Service is currently able to provide case management for

certain “at risk” veterans who are not eligible

for or currently receiving VA services, it is

unlikely that Option A would require statutory

changes. On the other hand, Option A would

undoubtedly require the addition of staff to the

Social Work Service at each VA medical center.

In addition, each VA medical center that does

not have a comprehensive list of available

non-VA services would have to develop such a

list and all VA medical centers would have to

adopt procedures to ensure that the list is kept

up-to-date.

It is also likely that VA medical centers with

large catchment areas would have to assign

some VA social workers to geographic areas

distant from the medical center, as has been

done by the Minneapolis VA Medical Center in

connection with its rural case management

program (see ch. 7). Lastly, the VA would have

to develop outreach procedures to identify

veterans with dementia who need help but are

unlikely to contact the VA on their own and have

no one to contact the VA for them.

Under option B, the VA would be responsible

for linking veterans with dementia to VA

services, and the non-VA linking system would

have primary responsibility for linking veterans

with dementia to non-VA services. This option

would probably be easier to implement than

option A, since the non-VA linking system

would, once established, have the capability to

serve people in all areas of the country and

would have to maintain an accurate resource list

to serve nonveterans anyway. The drawback to

Option B is the possible duplication of case

management and information and referral functions for some veterans who are receiving VA

services. Procedures for minimizing such duplication of effort could probably be worked out

between the VA Social Work Service and the

non-VA linking system.
Part I

Considerations in Developing

an Effective System for Linking

People With Dementia to Services
Chapter 2

The Need for Public Education

and Information and Referral
CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73

CAREGIVERS’ VIEWS ON THE NEED FOR INFORMATION . . . . . . . . . . . . . . . . . . . . 74

DEFICIENCIES IN CAREGIVERS’ KNOWLEDGE ABOUT SERVICES ...........76

The Relationship Between Caregivers’ Knowledge of Services and

the Use of Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .77

The Distinction Between Service Consciousness and Service Knowledge . . . . . . . . . . . 78

Implications for an Effective System To Link People With Dementia to Services . . . 78

WHY ACCURATE INFORMATION ABOUT SERVICES AND FUNDING

FOR SERVICES IS OFTEN NOT AVAILABLE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80

The Information and Referral Process in Cuyahoga County, Ohio . . . . . . . . . . . . . . . . . . 80

Seven Reasons Why Accurate Information About Services and Funding for

Services for People With Dementia Is Often Not Available . . . . . . . . . . . . . . . . . . . . . 82

Implications for an Effective System To Link People With Dementia to Services . . . 89

WHAT IS SPECIAL ABOUT THE INFORMATION AND REFERRAL

NEEDS OF PEOPLE WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .90

Comments by Administrators of State Information and Referral programs . . . . . . . . . . 91

An Analysis of Data on Callers to the Benjamin Rose Institute’s Telephone

Information and Referral Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91

Findings From Interviews With Caregivers in Cuyahoga County, Ohio . . . . . . . . . . . . . 92

Implications for an Effective System To Link People With Dementia to Services . . . 93

WHAT IS SPECIAL ABOUT THE INFORMATION AND REFERRAL NEEDS

OF ETHNIC MINORITY PEOPLE WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . 93

Findings From a Study of Four Ethnic Minority Groups

in Two California Counties . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 94

Implications for an Effective System To Link Ethnic Minority People

With Dementia to Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96

PHYSICIANS’ ROLE IN REFERRING PATIENTS AND

CAREGIVERS TO SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

Figures

Page

2-1. Caregivers’ Knowledge of Services in Cuyahoga County, Ohio, 1988 . . . . . . . . . . . 77

2-2. Illustrations From a “Foto Novela” (Picture Book) on Alzheimer’s Disease

That is Targeted to Mexican Americans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99

Tables

Page

2-1. Family Caregivers’ Knowledge of Six Types of Services, 1986 . . . . . . . . . . . . . . . . . 76

2-2. Caregivers’ Opinions About Why People Do Not Use Services,

Cuyahoga County, Ohio, 1988 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79

2-3. Agency Representatives’ Opinions About Why People Do Not Use Services,

Cuyahoga County, Ohio, 1988 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79

2-4. The Percentage of Ethnic Minority Caregivers Who Said They Know About

Certain Services, Los Angeles and San Diego Counties, California, 1988 . . . . . . . . . 95
Chapter 2

The Need for Public Education and Information and Referral

INTRODUCTION

Many factors determine whether people with

dementia and their caregivers ultimately are linked

to the services they need.1 Clearly, people cannot be

linked to services or sources of funding for services

that do not exist. The lack of sufficient services and

funding for services for people with dementia is a

major public policy concern that was emphasized in

OTA’s 1987 assessment Losing a Million Minds:

Confronting the Tragedy of Alzheimer’s Disease

and Other Dementias (831). Unfortunately, the ideal

of having sufficient services and funding for services

is not the current reality.

To avail themselves of whatever services do exist,

families and others who are caring for people with

dementia need accurate information about what

services and funding for services are available. To

plan realistically and to make informed decisions

about a patient’s care, these caregivers also need to

know what services and funding are not available.

Evidence reviewed in this chapter suggests that in

many cases, accurate information about the availability of services and funding for services is extremely difficult to obtain. Moreover, many caregivers are unaware of potentially helpful resources.

Physicians, other health care and social service

professionals, service providers, and others who

work with people with dementia and their caregivers

are frequently called on to advise the caregivers

about services and to select and arrange services for

people with dementia who have no informal caregiver to help them. In order to provide that assistance, these individuals who work with dementia

patients and their caregivers also need accurate

information about services and funding for services.

Like families, however, they may have difficulty

obtaining that information.

This chapter focuses on the informational aspects

of the process by which people with dementia and

their caregivers are linked to services. The first

section below presents information on caregivers’

views concerning the need for accurate information

about services and funding for services. A subsequent section discusses deficiencies in caregivers’

knowledge about services and notes the relationship

between caregivers’ knowledge about services and

their use of services. Another section describes the

information and referral process for people with

dementia in a specific locality (Cuyahoga County,

Ohio) and suggests seven reasons why accurate

information about services and funding for services

is often not available. The last three sections of this

chapter address what is special about the information and referral needs of people with dementia and

their caregivers, what is special about the information and referral needs of ethnic minority people

with dementia, and the role of physicians in linking

demented patients and their caregivers to services.

At the conclusion of each major section, OTA draws

implications for an effective system to link people

with dementia and their caregivers to services.

On some of the topics addressed in this chapter,

there is little information in the general literature. As

noted in chapter 1, OTA commissioned several

small, exploratory studies for this assessment in

order to learn more about how people with dementia

are linked to services and about problems that may

arise in that process. Although the findings of these

studies cannot be generalized with certainty, they do

provide insights into the linking process that are

useful in thinking about the characteristics of a

system that would effectively connect people with

dementia to services. Two of the OTA-commissioned studies-one in Cuyahoga County, Ohio

(186) and the other in two counties in southern

California (866)pertain particularly to the informational aspects of the linking process and are

discussed in some detail.2

An important conclusion that OTA draws from

the analysis in this chapter is that public education

and information and referral are two essential

components of an effective system to link people

with dementia and their caregivers to services.

Public education in this context means providing

general information to help people understand

dementia and the kinds of services that may be

helpful for individuals with dementia. Information

and referral in this context means providing inforlsee ~ble I-2 inch. I for a list of the services that may be needed for people tith dementi.

Womplete reports on the OTA-commissioned studies in Cuyahoga County and in southern California are available from the NationaI Technical

Information Service in Springileld, VA (see app. A).

–’73–
74 ● confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

mation about and referrals to specific services and

sources of funding for services in the community.

Although this chapter focuses on the informational aspects of the linking process, it is important

to note that some people with dementia and their

caregivers are unlikely to respond to public education programs and may be unable or unwilling to

contact an information and referral source on their

own. OTA’s analysis in chapter 3 suggests that to

link some people to services, active outreach and

case management are necessary. Thus, outreach and

case management are also essential components of

an effective system to link people with dementia to

services.

Accurate information about services for people

with dementia includes information about the quality of services, as well as about the availability of

services and funding. Families and other caregivers

want the services they may use for a person with

dementia to be of acceptable quality, and their

perceptions about quality may influence their decisions about using the services. Because of the

importance of information about quality and because of the complexity of issues involved in

evaluating the quality of services for people with

dementia, a full chapter of this report (ch. 5) focuses

specifically on problems in obtaining information

about quality.

CAREGIVERS’ VIEWS ON THE

NEED FOR INFORMATION

Families and other informal caregivers of people

with dementia often view the lack of accurate

information about services and funding for services

with frustration and consider it an important aspect

of the difficulty of caring for a person with dementia.

Numerous State task forces and committees that

have focused on the problems of Alzheimer’s

disease and related dementias have noted caregivers’

concerns about the lack of accurate information

about services and funding (37,142,246,360,396,408,

497,500,530,537,592,599,870,920). 3 The Alzheimer’s

and Related Diseases Task Force in Kansas reported,

for example:

Family members and caregivers pleaded at the

public hearings for information about Alzheimer’s

and related diseases. They pleaded for reliable

referrals to services and easily accessible and up-todate information so they could properly plan and

care for their loved ones (396).

The Wisconsin Task Force on Alzheimer’s Disease

and Other Irreversible Dementias similarly reported:

Alzheimer’s family members often tell distressing stories about not knowing where to go for help,

going from one service provider to another in a vain

search for assistance, and being misinformed about

availability of services or eligibility for programs

(920).

Echoing similar concerns, the New Jersey Alzheimer’s Disease Study Commission reported that

the caregivers of people with dementia were ‘all too

often passed from one potential information source

to another without obtaining answers and/or help in

identifying specific local resources” (599).

One of the specific concerns that caregivers

expressed to some State task forces and committees

on Alzheimer’s and other dementias was that

accurate information on eligibility for publicly

funded programs such as Medicaid was lacking. The

task forces in Maryland and Michigan noted that

some caregivers had been given incorrect information about Medicaid eligibility (497,530).

Another specific concern that caregivers expressed was the lack of information about legal and

financial matters related to patient care and the

difficulty of finding anyone to advise them on these

matters (37,99,142,246,408,497,500,530,599). One

son told the Kansas Alzheimer’s and Related Diseases Task Force, for example:

We talked to 17 attorneys to find one who would

accept the case. There is no one place or phone

number that can answer specific questions. I have

been told I am asking questions that no one has ever

asked before (396).

Lastly, families and informal caregivers told State

task forces and committees that many physicians

were not knowledgeable about services that might

benefit people with dementia and their families and

did not refer them to such services (412,479,497,

500,531,592,599). Despite the fact that some caregivers told State task forces and committees about

physicians who had been helpful in referring them to

support groups and other services (497,500,599),

many caregivers’ experiences were negative. One
Chapter 2—The Need for Public Education and Information and Referral ● 75

sample of 2,400 individuals, and responses were

received from 569 family caregivers of people with

dementia from 49 States and the District of Columbia. The responses from these 569 caregivers indicate the importance to family caregivers of information and assistance in locating services and sources

of funding for services.

Part of the survey questionnaire asked respondents how important they considered 11 different

types of assistance in the care of people with

dementia (926). The three types of assistance

considered ‘essential’ by the largest percentages of

the 569 responding family caregivers are listed

below. Two of the three (those in italics) had to do

with information and assistance in locating services

b

f! {“ ; ‘

and funding for services:

;

/

s ,/; H*, 1. A paid companion who could come to the home $.*

a few hours each week to give them a rest (68

Photo credit: M.P. Cordero-Aranda

The difficulty of obtaining accurate information about

services and funding for services is extremely frustrating

for many family caregivers.

woman in Michigan said her husband’s physician

gave her no referrals or other advice except to

‘‘accept the fact that the patient would never be any

better than he was at that time and would probably

get progressively worse” and ‘‘take him home and

learn to live with it” (531). A caregiver in Massachusetts said that the demented person’s physician

“offered no advice or any alternative other than

nursing home care” (500).

In 1986, in conjunction with OTA’s 1987 assessment of Alzheimer’s and other dementias, a mail

survey of individuals drawn from the mailing list of

the national Alzheimer’s Association was performed

(926). 4 Survey questionnaires were mailed to a

percent said that a paid companion was essential, and 96 percent indicated that it was either

essential, very important, or important).

2. Assistance in locating people or organization

that provide care for the patient (56 percent

said that such assistance was essential, and 97

percent said it was either essential, very important, or important).

3. Assistance in applying for Medicaid, Social

Security, Supplemental Security Income, etc.

(54 percent said that such assistance was

essential, and 94 percent said it was either

essential, very important, or important) (926).

Another study of 59 black family caregivers of

people with dementia in Cleveland, Ohio, had

similar findings (750). Asked what help they needed

to care for their relative with dementia, the caregivers in this study said they needed the three things

listed below. One of these (the item in italics) had to

do with information about services and funding for

services:

1. Affordable respite services.

2. Counseling to help resolve family conflicts

about the patient’s care.

3. Information about Alzheimer’s disease, available community resources, and sources of legal

and financial assistance.

4A ~mplete ~epofi on@e 1986 ml~uw conducted in conjunction wi~ ()~’s asses~ent is available horn tie National TIX~Cd hfOMMtiOll

Service in Sprin@eldj VA (see app. A).
76 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

DEFICIENCIES IN CAREGIVERS’

KNOWLEDGE ABOUT SERVICES

Many caregivers of people with dementia have

limited knowledge about the availability of services

that may benefit a person with dementia. One of the

questions in the 1986 mail survey just mentioned

pertained to caregivers’ knowledge of services in

their communities (926). As shown in table 2-1, the

percentage of the 569 family caregivers who said a

service was available or not available varied, depending on the service in question. The important

finding for the discussion here, however, is that,

depending on the particular service in question,

between 31 and 55 percent of the responding caregivers said they did not know whether the service

was available.

Another survey of family caregivers in 16 States

asked the caregivers if they knew of any services

(excluding support groups) for people with dementia

in their community (117), Although 43 percent of

the 597 responding caregivers said they knew of at

least one community service and 21 percent said

they were certain that no services were available in

their area, 36 percent of the responding caregivers

said they did not know whether any services were

available. Since the sample of family caregivers for

this survey was drawn from the mailing lists of

family support groups-and family support groups

often provide caregivers with information about

services (245,256,294)-the fact that more than

one-third of the survey respondents did not know

whether services were available in their community

is surprising and indicates the extent of the problem

of caregivers’ lack of knowledge about services.

A third study of 93 family caregivers of people

with dementia in Michigan also asked the caregivers

about the availability of services in their communities (138). Depending on the particular service in

question, 14 to 58 percent of the responding

caregivers said they did not know whether the

service was available. Older caregivers were more

likely than younger caregivers to say they did not

know whether services were available. Caregivers

who were depressed (as shown by responses to a

widely used depression questionnaire) were less

likely than other caregivers to know whether services were available.

Table 2-l—Family Caregivers’ Knowledge of Six Types

of services, 1986 (N = 569)

“As far as you know, is it possible where you live to obtain the

services of”

Service Yes No Don’t know

Paid companion/

home health aide.. . . . . . . . . . 52% 17%2 31%

Visiting nurse . . . . . . . . . . . . . . . . 55 11 34

Nursing home care . . . . . . . . . . . 23 36 41

Adult day care . . . . . . . . . . . . . . . 31 26 43

Respite care . . . . . . . . . . . . . . . . . 23 26 51

Domiciliary/boarding care . . . . . . 16 29 55

SOURCE: Yankelovich, Skelly and White/Clancy, Shulman, Inc., “Caregivers of Patients With Dementia,” contract report prepared for

the Office of Technology Assessment, U.S. Congress, Washington, DC, April 1986.

As mentioned earlier, OTA commissioned an

exploratory study in Cuyahoga County, Ohio, to

shed light on the process by which people with

dementia are linked to services and the problems that

may arise in that process (186).5 That study in

Cuyahoga County included in-depth interviews with

26 caregivers who contacted the telephone helpline

of the Cleveland Alzheimer’s Association Chapter

between April and July 1988-6 spouses, 14 adult

children, 4 other relatives, and 2 friends of a person

with dementia. As part of the interview conducted

for OTA, each of the 26 caregivers was read a list of

20 services that might be needed for a person with

dementia and asked two questions with respect to

each service: 1) whether he or she had heard of the

service, and 2) whether he or she knew who provided

it in Cuyahoga County.

As shown in figure 2-1, the only services that

more than 75 percent of the 26 caregivers had heard

of were home-delivered meals, adult day care,

support groups, and in-home skilled nursing care

(186). The remaining 25 percent of the caregivers

were not familiar with these four services, and even

more caregivers were not familiar with other services such as counseling, referral services, homemaker services, and case management.

For many of the services on the list, a majority of

the 26 caregivers interviewed could not identify

specific providers. There were no services for which

more than 65 percent of the caregivers could identify

a specific provider. Only half of the caregivers said

they could identify a specific provider of referrals or

education and information programs on dementia.

Only one-third said they could identify a specific

5AII of the components of the study in Cuyahoga County, Obio, are described ti app. A.
Chapter 2-The Need for Public Education and Information and Referral ● 77

Figure 2-l-Caregivers’ Knowledge of Services in Cuyahoga County, Ohio, 1988

Percent

Home-delivered meals

Adult day oare

Support groups

In-home skilled nursing care

Medical diagnosis

Counseling

Homemaker, companion, etc..

Education and Information

Referral service

Live-in caretaker

Institutional respite

Transportation

Emergency response system

Congregate meals

Legal services

Occupational or physical therapy

Recreational services

Chore services

Case management

Telephone reassurance

Have heard of ● ervice

Percent

1 65

1 50

1

I 54

1 35

t 1 64

I 6 0

1 12

1 36

38

31

38

31

1 27

23

1 12

19

4

Know who provides this service after

being told what the ● ervice is

● includes sitter or home health aide

SOURCE: S. Eckert and K. Smyth, “Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia,” contract report

prepared for the Office of Technology Assessment, :U.S. Congress, Washington, DC, 1988.

provider of homemaker, companion, sitter, or home

health aide services.

The caregivers of people with dementia who were

interviewed in the exploratory study in Cuyahoga

County may not be representative of caregivers of

people with dementia across the country or even

caregivers in Cuyahoga County. That all 26 of them

were in contact with an Alzheimer’s Association

chapter suggests that these caregivers may be more

knowledgeable about services than caregivers in

general. Nevertheless, the fact that many of these 26

caregivers were unaware of services suggests that

lack of knowledge about potentially helpful services

is a significant problem among caregivers.

The Relationship Between Caregivers’

Knowledge of Services and the Use of Services

Not all families and other informal caregivers who

know about services use them. The 1986 mail survey

of family caregivers that was commissioned by OTA

as part of its 1987 assessment of Alzheimer’s and

other dementias found that, depending on the service

in question, 32 to 61 percent of the family caregivers

who knew about a service had used or were using the

service (926). The previously mentioned survey of

597 family caregivers of people with dementia in 16

States found that 58 percent of the caregivers who

knew about any community services had used at

least one of them (1 17).

To learn more about what factors determine

whether caregivers of people with dementia use

services and how caregivers’ knowledge of services

affects their use of services, the contractors who

conducted the study in Cuyahoga County asked the

26 caregivers they interviewed to give their opinions

about why people do not use services (186). Each

caregiver was read a list of 14 possible reasons why

people might not use services and asked: 1) whether

and how often each was a reason why people in

general did not use a service; and 2) whether it was

a reason why they themselves did not use the service.

As shown in table 2-2, the reason for not using

services that was identified most frequently by the

26 caregivers in Cuyahoga County-both for people

in general and for themselves-was lack of knowledge about what services are available (186). The

reason second most frequently identified by the

caregivers for themselves was inability to afford the

services. The reason second most frequently identified by the caregivers for people in general was lack
78 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

of knowledge about how to make arrangements to

use services.

In addition to including interviews with caregivers, the study conducted for OTA in Cuyahoga

County, Ohio, included in-depth interviews with

representatives of 24 agencies in the county that

provide information and referrals for people with

dementia--4 hospitals, 2 home care agencies, 4

county and city government offices on aging, the

county human service agency, 3 private social

service agencies, 5 senior centers, 2 multiservice

agencies, the county public library, the county

information and referral agency, and a community

mental health center (186). Each of the agency

representatives was given a list of 15 possible

reasons why people might not use services and asked

to give his or her views on how often each reason

keeps people with dementia and their caregivers

from using services.

As shown in table 2-3, clients’ lack of knowledge

about the availability of services was idenified as

often or occasionally a barrier to service use by all

24 agency representatives in Cuyahoga County,

Ohio (186).

There are many reasons why people do not use

services. Barriers to the use of services that pertain

to the personal characteristics or perceptions of

people with dementia and their caregivers are

discussed in chapter 3. The main point here is that

the 26 informal caregivers and 24 agency representatives interviewed in the study in Cuyahoga County,

Ohio, identified people’s lack of knowledge about

services as the single most important barrier to the

use of available services. Lack of knowledge about

services was identified as a barrier to the use of

services more often than any other factor, including

the ability to pay for services. Although the results

of the study in Cuyahoga County cannot be generalized with any certainty given the small sample sizes

and other aspects of the study, they do suggest that

lack of knowledge about services among the caregivers of people with dementia is an important

barrier to the use of available services.

The Distinction Between Service

Consciousness and Service Knowledge

 In thinking about the problem of caregivers’ lack

of knowledge about services, it is useful to distinguish between:

. general awareness of services, which some

researchers call service consciousness; and

. knowledge about a specific service, including

who provides it in a community, which some

researchers call service knowledge (431).

As shown in figure 2-1, the study conducted for

OTA in Cuyahoga County, Ohio, made that distinction explicitly and found that many of the 26

caregivers interviewed there not only lacked service

knowledge (i.e., did not know of specific providers

of services in the community) but also lacked service

consciousness (i.e., had never even heard of some

types of services) (186). Most of the other studies

that have investigated caregivers’ knowledge of

services have not drawn any distinction between

service consciousness and service knowledge; and

the questions they have asked seem to pertain more

to service knowledge than to service consciousness.

Despite the fact that most studies have not focused

on it, caregivers’ lack of service consciousness is an

important aspect of the overall problem of caregivers’ lack of knowledge about services. People

who are generally aware of potentially beneficial

services are likely to search for information about

the availability of a specific service in their community when the need arises (43 1); people who are not

generally aware of services are unlikely to search for

that information.

Implications for an Effective System To Link

People With Dementia to Services

Since caregivers’ lack of knowledge about services is at least one of the major reasons that people

with dementia and their caregivers do not use

services, an effective system to link people with

dementia to services must find ways of increasing

caregivers’ knowledge about services. In order to

increase caregivers’ knowledge of services, a linking system must seek to enhance both caregivers’

general awareness of the kinds of services that may

be helpful (i.e., service consciousness) and their

knowledge of specific service providers (i.e., service

knowledge) (186).

Caregivers’ service consciousness can be increased by public education programs and materials

such as those that have been developed by the

Alzheimer’s Association, other voluntary associations that represent people with Alzheimer’s, Huntington’s, or Parkinson’s disease, or stroke, and some

State and local government agencies. Public educa-
Chapter 2-The Need for Public Education and Information and Referral . 79

Table 2-2-Caregivers’ Opinions About Why People Do Not Use Services,

Cuyahoga County, Ohio, 1988 (N = 26)

How often is it true Is this a reason you

for people in general? did not use services?

Possible reasons why people do not use services usually Yes

People don’t know what services are available . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73% 81%

People know what services are available but don’t know how to make 42 50

arrangements to use them . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

People can’t afford to pay for services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 73

People don’t think they need the services recommended to them . . . . . . . . . . . . . 38 50

People don’t use the services because they do not want

to lose their independence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 19

The system of services for people with dementia and their families

is too complicated for people to figure out . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 46

People don’t recognize the fact that they need services . . . . . . . . . . . . . . . . . . . . . 33 42

The kinds of services needed by people with dementia and their families

aren’t available in the areas where some people live . . . . . . . . . . . . . . . . . . . . . 31 50

Some services needed by people with dementia and their families

just aren’t available . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 54

People don’t have transportation to services. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 35

Using services makes people feel uncomfortable . . . . . . . . . . . . . . . . . . . . . . . . . . 27 31

Agencies that provide information about services and make referrals don’t

know enough about what services are available . . . . . . . . . . . . . . . . . . . . . . . . . 27 42

People are afraid others will not approve if they use services. . . . . . . . . . . . . . . . 19 19

People have money but are not willing to pay for services . . . . . . . . . . . . . . . . . . . 3 8

SOURCE: S. Eckert and K. Smyth, “Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia,” contract report

prepared for the Office of Technology Assessment, U.S. Congress, Washington DC, 1988.

Table 2-3-Agency Representatives’ Opinions About Why People Do Not Use Services,

Cuyahoga County, Ohio, 1988 (N = 24)

How frequently does each barrier keep

potential clients from using services?

Possible barriers Often Occasionally

Clients don’t know that services are available . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75% 25%

Clients do not have adequate financial resources to pay for the service. . . . . . . . . . . . . . . . . . . 71 16

Clients desire to remain independent of the formal care system . . . . . . . . . . . . . . . . . . . . . . . . . . 58 33

Services aren’t available in some geographic areas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58 29

Clients don’t recognize they need formal services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54 42

Clients don’t have transportation to the service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54 25

The service system is too complex or fragmented for people to use . . . . . . . . . . . . . . . . . . . . . . 48 30

Clients don’t know how to access services once they’ve found they’re available . . . . . . . . . . . . 42 46

Clients feel the recommended service is not needed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 46

Clients are uncomfortable using recommended servicesa . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 38

Needed services aren’t offered for dementia clients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 29

Persons providing information and referral don’t have comprehensive knowledge about

what services are available . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28 42

Clients are judged to have adequate financial resources but are unwilling to pay for services . 16 42

Clients think others will disapprove of their using the recommended service . . . . . . . . . . . . . . . 12 29

Clients’ schedules or competing demands prevent their use of services. . . . . . . . . . . . . . . . . . . 4 29

aOne respondent (4 percent) did not answer this question.

bhreer@ondents(12 percent) did not answer this question.

SOURCE: S. Eckert and K. Smyth, “Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia,” contract report

prepared for the Office of Technology Assessment, U.S. Congress, Washington DC, 1988.

tion programs and materials inform people about The detailed information that people need in order

dementia and about the kinds of services that maybe to select and arrange a particular service can be made

helpful for people with dementia; they generally do available through information and referral pronot give detailed information about specific agen- grams. Information and referral programs can only

cies or individual service providers, although they assist people who contact them, however, and

frequently do give a telephone number to call for people who are unaware of services are unlikely to

such information. call. This observation underscores the point made
80 ● Confused Minds, Burdened Families: Finding Help for People with Alzheimer’s & Other Dementias

earlier that an effective linking system must include

public education as well as information and referral.

WHY ACCURATE INFORMATION

ABOUT SERVICES AND FUNDING

FOR SERVICES IS OFTEN NOT

AVAILABLE

There are many anecdotes about the difficulty of

obtaining accurate information about services and

funding for services for people with dementia. To

OTA’s knowledge, however, the only research on

the number and types of agencies that provide

information and referrals for people with dementia

and their referral procedures is the exploratory study

conducted for OTA in Cuyahoga County, Ohio

(186).6

The following discussion presents the Cuyahoga

County study’s findings about the information and

referral process for people with dementia in the

county, identifies seven reasons why accurate information about services and funding for services is

often not available, and discusses the implications of

those findings and reasons for an effective system to

link people with dementia to services.

Although the findings in Cuyahoga County are

not necessarily generalizable to other localities, they

do provide a context and a basis for thinking about

the problem of lack of accurate information about

services and funding for services. OTA would like to

emphasize that no criticism of Cuyahoga County is

intended by any part of the discussion in this report.

In fact, Cuyahoga County is known for its commitment to aging and human services and for the recent

efforts of many organizations and individuals there

to improve services and service delivery for people

with dementia. Whatever problems in linking people

with dementia to services can be noted in Cuyahoga

County, therefore, are likely to be worse in other

parts of the country. OTA is grateful to the agencies

in Cuyahoga County for their participation in its

study, which provides the only available data on

some aspects of the information and referral process

for people with dementia.

Photo credit: Bill Adams

Public education materials such as these fact sheets on

Alzheimer’s disease and caregiving can increase

caregivers’ knowledge about dementia and about the kinds

of services that maybe helpful for a person with dementia.

The Information and Referral Process in

Cuyahoga County, Ohio

In 1987, OTA’s contractors mailed a survey

questionnaire to 324 public and private agencies in

Cuyahoga County, Ohio, that the contractors

thought might provide information and referrals or

services of any kind for people with dementia (186).

Ninety-seven (30 percent) of the 324 agencies

responded. OTA’s contractors did not make any

attempt to obtain information about the 227 agencies

that did not respond to the survey questionnaire.

Of the 97 agencies that responded to the survey in

Cuyahoga County, 84 indicated that they did in fact

provide information and referrals and/or services for

people with dementia-8 hospitals, 9 nursing homes,

11 home care agencies, 2 adult day centers, 10 local

government agencies, 3 social service agencies, 21

senior centers or programs, 2 multiservice agencies,

10 referral agencies, and 8 other types of agencies

(186).
Chapter 2—The Need for Public Education and Information and Referral ● 81

Of these 84,75 agencies (including agencies of all

the types just listed) indicated that they do provide

information and referrals for people with dementia

in Cuyahoga County. Some of the 75 agencies (e.g.,

referral agencies) provide information and referrals

as their primary function, and others (e.g., hospitals,

nursing homes, senior centers) provide information

and referrals as a secondary function. Sixty-three of

the 75 agencies said that they provide information

and referrals for people with dementia who are not

receiving any services from the agency; presumably,

the other agencies provide information and referrals

only for people with dementia who are receiving

services from the agency.

As noted earlier, OTA’s contractors conducted

in-depth interviews with representatives of 24 of the

75 agencies that said they provide information and

referrals for people with dementia (186). According

to these agency representatives, many of the 24

agencies provide information and referrals for people with dementia both over the telephone and in

person. They tell people about available services and

give them the names and telephone numbers of

specific service providers. Many of the agencies also

hand out or mail printed educational materials,

including Alzheimer’s Association brochures, other

pamphlets and articles on dementia, lists of nursing

homes and other types of agencies, and the names

and telephone numbers of agencies and contact

people within those agencies. One agency representative noted, “We send them anything we can think

of to get the information across. ”

Only about half the 24 agency representatives

interviewed in Cuyahoga County said that their

agencies provide information about funding for

services (186). With a few exceptions, the agencies

that provide it furnish information pertaining only to

funding for their own agency’s services.

Only 1 of the 24 agency representatives was from

an information and referral agency per se (186). The

other 23 agencies do not provide information and

referrals as a primary function but often provide

information and referrals as a byproduct of intake for

their own services-that is, if a person who contacts

the agency is not eligible for the agency’s services or

needs services the agency does not provide, he or she

is referred to another agency.

Other than the information and referral agency,

most of the 24 agencies do not consider a person for

whom they provide telephone information and

referrals to be their client (186). Thus, a person does

not become a‘ ‘client’ of the agency until he or she

is linked to a service provided by the agency. Most

of the 24 agency representatives said their agencies

will provide information and referrals to anyone,

even if the person needing assistance is not a

“client” in this sense, but they seem to regard the

information and referrals they provide for people

they do not consider “clients” as an informal

community service rather than a formal function of

the agency.

The 24 agency representatives were asked what

criteria their agency used to select a provider once

the agency had determined that a person needed a

particular service (186). The criteria named most

frequently were the person’s financial situation and

the location of the service (8 mentions each). Other

criteria mentioned were the provider’s reputation

and past performance (7 mentions); the patient’s or

family’s needs, characteristics, and/or willingness to

accept a provider (6 mentions); and the agency’s

informal affiliations with various providers (4 mentions).

Eighteen (75 percent) of the 24 agency representatives indicated that their agencies sometimes refer

potential clients to other agencies for a service even

though their own agency provides the service (186).

Among the reasons for interagency referrals, geographic location was the most frequently cited.

Other reasons included the referring agency’s inability to accept new clients; patient or family preference; the patient’s ineligibility for services from the

referring agency (e.g., too young); agency rules or

interagency agreements that certain categories of

people (e.g., those in need of protective services)

should be referred automatically to another agency;

and financial considerations.

Some of the agency representatives said that

clients are referred from one agency to another when

third-party reimbursement for a client’s care is no

longer available to the first agency (186). They said

that this practice is common when a client of a home

care agency is hospitalized: when the person is

discharged from the hospital, the hospital’s home

health care agency often provides care until thirdparty reimbursement runs out; then the person is

referred back to the original agency for ongoing care.

One item of particular interest in this OTA

assessment is how agencies that provide information

and referrals for people with dementia keep current
82 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

on what services are available. In the study in

Cuyahoga County, OTA’s contractors gave all of the

24 agency representatives a list of ways in which one

might stay up-to-date and asked them which ways

were used in their agency (186). The largest number

of agency representatives (19 agencies or 79 percent) reported that their agencies use the Cleveland

Alzheimer’s Association Chapter to keep current on

what services are available for people with dementia. (Interestingly, the perception of the staff of

Cleveland Alzheimer’s Association Chapter office

is that very few agencies call the chapter for service

information, Since the study in Cuyahoga County

was conducted under the auspices of the Cleveland

Alzheimer’s Association Chapter, it is difficult to

know how many agencies actually use the chapter to

keep current and how many just gave the answer

they thought the researchers wanted to hear.)

The majority of the 24 agency representatives

interviewed in Cuyahoga County reported that their

agencies use the countywide information and referral agency, local government offices on aging,

Cleveland’s Federation for Community Planning,

and information supplied by other service providers

to keep current on what services are available for

people with dementia (186). Some of the agency

representatives said that staff of their agencies keep

current by attending health fairs, seminars, workshops, and committee and board meetings or through

newsletters and published directories.

All 24 agency representatives reported that staff

of their agencies use “informal friendships or

association with other agency staff” to keep current

on what services are available for people with

dementia (186). On the basis of agency representatives’ comments during the interviews, OTA’s

contractors concluded that informal networking is

probably the primary way that agency staff members

keep current on services for people with dementia.

Staff members not only learn about specific services

that way, but they also establish relationships with

staff of other agencies that are invaluable later when

they are trying to arrange services for a client.

All 24 agency representatives said their agencies

initiate contacts with other service providers for at

least some of the people for whom they provide

information and referrals, but only 1 of the agencies

initiates such contacts routinely (186). Other agencies encourage people to make their own contacts

with agencies to which they are referred. Some

agencies only initiate contact with other agencies if

the person needing assistance is considered a client.

Often, a decision about who should make the contact

is based on staff judgment about the patient’s or

family’s ability and willingness to make the contact.

One of the 24 agency representatives referred to the

process of agency-to-agency contact as “babying”

people who are afraid of making their own contacts.

Finally, although most of the 24 agency representatives interviewed in Cuyahoga County said their

agencies follow-up on some referrals to ensure that

needed services are obtained, few agencies have

systematic followup procedures. Some agencies ask

the patient or family and the other provider to report

back on the success or failure of a referral, but if

these individuals do not report back, they are not

contacted systematically by the agency.

Seven Reasons Why Accurate Information

About Services and Funding for Services for

People With Dementia Is Often Not Available

OTA’s analysis of information and referral procedures and agencies in Cuyahoga County, Ohio,

suggests that there are at least seven reasons why

accurate information about services and funding for

services for people with dementia is often not

available. The seven reasons are highlighted in the

discussion that follows. OTA’s informal discussions

with members of the advisory panel for this assessment and with numerous other people who work

with dementia patients and their families indifferent

communities suggest that the same reasons are

applicable in many areas of the country beyond

Cuyahoga County.

At the start of this assessment, OTA staff expected

that the biggest problem families and others confront

in trying to obtain accurate information about

services and about funding for services for people

with dementia would be the lack of information. In

the course of the assessment, however, OTA found

that wrong information and partial information may

be at least as big a problem as the lack of

information. Caregivers or others who contact an

information and referral source and receive no

information may continue to search for assistance

from other information sources. People who receive

wrong information-for example, those who are

told, “There are no services, ” when, in fact, there

are services-may just accept the information as

correct and not even try to contact another source of
Chapter 2—The Need for Public Education and Information and Referral ● 83

information. Likewise, people who receive partial

information-for example, those who are told,

“There is an adult day care center 30 miles from

here,” when, in fact, there is another center much

closer—may accept what they have been told, only

to discover much later that there were other options.

The origins of wrong and partial information about

services and funding for services are identified in the

following discussion.

1. Because there are many potential providers of services for people with dementia

and because the services they offer change

from time to time, it is difficult for anyone

to maintain an up-to-date list of available

services.

In the exploratory study in Cuyahoga County,

Ohio, OTA’s contractor sent a questionnaire to 324

agencies that they thought might provide information and referrals or services of any kind for people

with dementia (186). Of the 97 agencies that

completed survey questionnaires, 84 agencies said

they did in fact provide information and referrals

and/or services for people with dementia. It is likely,

given the diverse needs of people with dementia and

their caregivers, that a good number of the 227

agencies that did not respond to the survey are also

potential sources of assistance. In addition, many

voluntary associations and individual professionals

to whom the questionnaire was not sent are potential

service providers for people with dementia.

The fact that there are many potential service

providers does not mean that enough services are

available or that dementia patients’ needs can be

met. The study in Cuyahoga County did not address

the many details about an agency’s services that

determine whether the services are really available

to a particular patient and whether they meet his or

her needs. Those details, which affect the availability of services from agencies in all parts of the

country, not just Cuyahoga County, include:

an agency’s general eligibility criteria and any

additional eligibility criteria for a specific

service;

the exact nature of the service;

when and where the service is provided and for

how long;

what the service costs; and

whether there is any source of funding for the

service other than client fees.

These kinds of details often reflect regulations

and requirements associated with the agency’s

funding source (e.g., Medicare, Medicaid, State

programs). They may also reflect State or local

government licensing or certification requirements

and the mission, objectives, and history of the

agency (391,481,641,821,83 1).

The details of an agency’s services change from

time to time, often in response to changes in the

requirements of the agency’s funding sources (641,

821,922). Federal, State, and local governments and

private associations and foundations initiate new

services and terminate others. Publicly and privately

funded research and demonstration projects that

provide services also begin and end. These changes

may increase or decrease the availability of services.

Since they also affect an agency’s overall budget,

these changes may also determine the total volume

of services an agency can provide.

Some of the changes in agencies’ services are

small, but their cumulative impact is to create a

constantly changing service environment. Agencies

may continue to exist with the same name and in the

same location, but the services they provide change

in ways that make them more or less available,

appropriate, accessible, and affordable for different

kinds of people. Keeping track of all these changes

in order to maintain an up-to-date list of available

services is difficult and time-consuming. Yet such a

list is an essential component of an effective system

for linking people to appropriate services.

Home care services generally change more frequently and are more difficult to keep track of than

nursing home services. Most patients and families

prefer home care to nursing home care, however, and

so it is important to keep lists of home care services

up-to-date.

As awareness of Alzheimer’s disease and other

diseases that cause dementia has increased in recent

years, new services designed specifically for people

with dementia have been and continue to be developed in many communities. At the same time,

research and demonstration projects established

several years ago and other time-limited programs

that provide services for some people are ending.

Thus, the constant change that characterizes the

service environment in general is probably even

greater for services designed specifically for people

with dementia.
84 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Photo credit: N Winter

To connect people with dementia to appropriate services, a linking system must have an accurate, up-to-date list of available

services that includes all the kinds of services that may be needed for a person with dementia.

The number of potential service providers, the

many details that determine whether their services

are available and appropriate for a particular patient,

and the constant change in services contribute to the

difficulty families and others face in obtaining

accurate information about services. It is easy to

understand in this context why people sometimes

receive wrong information or partial information

about available services (324,641,821,939). The

need for an accurate resource list and the difficulty

of maintaining it are also clear.

Some areas of the country have fewer service

providers than Cuyahoga County, Ohio, and some

have more. In areas with fewer providers, maintaining an up-to-date resource list is less difficult but

equally important for linking people to appropriate

services.

In many communities, one or more agencies

compile and update resource lists that may include

all available services, certain types of services, or

services for certain client groups. In some communities, the area agency on aging (AAA) or a local

government office on aging maintains a list of

services for elderly people. Lists compiled by these

groups are not always complete or accurate with

respect to services that may be needed for people

with dementia, however. That observation is illustrated by the fact that in 1985, the Georgia Alzheimer’s Disease Study Committee requested that

the State’s AAAs provide an inventory of services

that might be used for people with dementia; the

committee subsequently found that the inventories it

received from the AAAs ‘‘varied widely in their

completeness and accuracy to the extent that additional editing, followup, and refinement of responses [were] needed before they could be used”

(246). Other State task forces and committees have

not commented specifically on the completeness or

accuracy of resource lists in their States, but some

have noted that an accurate list is needed, and some

have attempted to compile such a list, thus suggesting that the lists available to them were not adequate

(37,142,360,396,497,500,538,599,713,790).
Chapter 2—The Need for Public Education and Information and Referral ● 85

To maintain an accurate list of services requires a

continuing commitment of resources. Computers

and available software packages greatly facilitate

the task, but whoever is maintaining the list must

commit the time needed to keep track of changes,

identify new services, and update the database.

Government agencies and private groups sometimes

pay for the development of a resource list on a

one-time basis but fail to commit resources for

updating it (259). As time passes, families and others

that contact providers on the list fund that some

services have changed or are no longer available.

New services may not be on the list at all. Without

continual updating, the list itself can become a

source of wrong or partial information.

2. A large number of agencies and individuals provide information and referrals for

people with dementia, but many of them

do not have an accurate resource list or

other effective methods for keeping up to

date on available services.

The study conducted for OTA in Cuyahoga

County, Ohio, illustrates that a given area may have

many sources of information and referrals for people

with dementia (186). Of the 97 agencies that

responded to the survey questionnaire that OTA’s

contractors sent to public and private agencies in the

county, 75 indicated that they provide information

and referrals for people with dementia. It is possible

that some of the 227 agencies that did not respond to

the survey also provide information and referrals.

Furthermore, some of the voluntary associations and

individual professionals who were not included in

the agency survey may also provide information and

referrals for people with dementia in Cuyahoga

county.

From their interviews with 24 agency representatives in Cuyahoga County, OTA’s contractors determined that, in general, agency staff keep up to date

on available services through informal contacts and

active networking-a process one agency representative called “hustle” (186). In the view of these

contractors, the reliance of agency staff on informal

contacts and relationships to keep current cannot be

overstated. OTA’s contractors found, however, that

many of the agency representatives lacked a broad

knowledge of available services, and the contractors

concluded that although informal networking may

be a valuable source of information about services,

it is not sufficient by itself in a complex service

environment, such as that found in Cuyahoga

County and many other parts of the country.

To maintain an accurate list of services for people

with dementia and their caregivers is difficult, as

discussed earlier, and many agencies that provide

information and referrals for people with dementia

are unlikely to be able to commit sufficient staff time

to maintain such a list. Individual physicians, other

health care and social service professionals, and

service providers who refer dementia patients and

their families to services are also unlikely to be able

to maintain an accurate resource list. A survey of 10

Alzheimer’s Association chapters conducted for

OTA in 1988 found that the chapters generally did

not have systematic procedures for maintaining a

comprehensive resource list (484).7

The large number of agencies and individuals that

provide information and referrals for people with

dementia, often without an accurate resource list,

increases the likelihood that patients, families, and

others will receive wrong information or partial

information about available services. Given this

problem, it would seem desirable to have a single

agency in each community designated-to maintain a

list of available services and to allow other agencies

and individuals easy access to the list. For such a

system to function effectively, all agencies and

individual service providers would have to be

committed to it. Ideally, agencies and individual

providers would share a database that they could

access by telephone or through periodic receipt of

updates on a magnetic storage medium (186).

3. Many agencies do not track the people

they serve by either diagnosis or condition

and therefore do not identify people with

dementia; people with dementia who are

not identified as such are unlikely to

receive appropriate information or referrals.

People with dementia must be identified as such

if they and/or their caregivers are to receive appropriate information and referrals. Very few of the

agencies in Cuyahoga County that responded to the

initial questionnaire or were interviewed keep records on the people they serve by either diagnosis or

condition (186). Most of these agencies do not keep

such records either on people for whom they provide

7see & 8 for a discussion of the survey of 10 Alzheimer’s &sOCtition c~pt~s.
86 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

telephone information and referrals or on people

who receive services from the agency. A study of

Massachusetts agencies that offer information and

referrals and home care services found that these

agencies also did not track the people they serve by

either diagnosis or condition (756).

The fact that an agency does not track people it

serves by their diagnosis or condition does not prove

that the individual social worker, nurse, or other

information and referral agent at the agency is

unaware of the person’s diagnosis or condition. It

suggests that this could be the case, however. If a

person with dementia is not identified as such by an

information and referral agent, the person will not be

referred for specialized services even if the services

are available and appropriate for his or her needs.

Furthermore, printed materials about dementia and

caregiving techniques that could be helpful to the

person’s caregiver are unlikely to be provided; and

common characteristics and care needs of people

with dementia that influence the kinds of services

they need may not be recognized.

It is important to note that some agencies do

identify clients by their diagnosis or condition.

Examples are Alzheimer’s Association chapters,

other voluntary associations that serve people with

Alzheimer’s, Huntington’s, or Parkinson’s diseases

or stroke, and Alzheimer’s diagnostic and assessment centers.8

4. The location of services is often an important factor in caregivers’ decisions about

service use, but agencies making referrals

do not always consider location.

Many of the 26 caregivers of people with dementia who were interviewed by OTA’s contractors in

Cuyahoga County indicated that the location of a

service influenced their decision about using the

service (186). Many of the 24 agency representatives

interviewed in Cuyahoga County also identified the

location of services as a factor that affects use. For

some patients and families, location is of concern

because they do not have a car or other means of

transportation. For others, location is of concern

because there is a possibility that the person with

dementia may become agitated on a long ride, and

this prospect may discourage families from using

services (488).

Some communities are so small that the location

of services may not significantly affect caregivers’

decisions about their use. In other communities,

there is no choice of service providers because only

one provider exists. In communities where there is

a choice, however, it would be helpful to patients

and caregivers if the referrals they got included the

names of providers near their homes. Making such

referrals requires the availability of a comprehensive

resource list and may require special formatting of

the list to identify providers in specific locations.

5. There are many potential sources of funding for services. Complex rules for each

source make it difficult for anyone to

provide accurate information about funding in general and even more difficult to

provide information that is relevant to the

service needs of a particular patient.

About half of the 97 agencies that responded to

the initial survey questionnaire in Cuyahoga County

indicated that they do provide information about

funding for services, but the information that most of

them provide pertains only to funding for their own

agency’s services (186). Few of the agencies responding to the survey indicated that they offer

benefits counseling (i.e., information about various

sources of funding for services and how and where

to apply for benefits).

The OTA contractors who conducted the study in

Cuyahoga County concluded that benefits counseling is difficult to provide (186). One of the reasons

it is difficult is that there are many potential sources

of funding for services. Many Federal, State, and

local government programs, private agencies, and

voluntary and charitable organizations pay for some

services that may be needed for people with dementia. Furthermore, some people have private insurance that covers some services.

It is important to emphasize that the fact that there

are many potential sources of funding for services

does not mean that adequate funding is available.

Each funding source has rules that limit the availability of funds by restricting who is eligible and what

services are covered. Eligibility may be restricted on

the basis of a person’s age, income, assets, diagnosis, physical or mental condition, residence, family

composition, and other factors. Coverage may be

restricted by rules about the type of service that can

Wegional Alzheimer’s diagnostic and assessment centers are discussed in ch. 8.
Chapter 2—The Need for Public Education and Information and Referral ● 87

be paid for; the profession, training, and licensure of

a person who can be reimbursed for providing the

service; the setting in which it can be provided, and

its duration and frequency (124,391,641,831). The

rules in each of these areas are interrelated, so that a

particular service is paid for only if it is provided to

a patient with a certain diagnosis or condition, by a

certain provider, in a certain setting, for a given time

period.

It is often unclear whether a person with dementia

will be eligible for services paid for by certain

programs-especially programs like Medicare and

Medicaid that have eligibility and coverage requirements related to a person’s physical condition and

physical care needs. Although many people with

dementia are determined to be ineligible for funding

for services through these programs (124,186,831),

other people with dementia do receive services paid

for by these programs. This situation may arise

because of real differences in the physical condition

and physical care needs of different patients. On the

other hand, it may arise because of differences in the

way a patient’s condition and care needs are

described on an application or billing form or

because of different interpretations of a program’s

regulations by its administrators. The eligibility and

coverage requirements for services paid for or

provided by the U.S. Department of Veterans Affairs

(VA) are particularly complex and difficult for

non-VA information and referral sources to understand or explain to caregivers.9

To further complicate an already confusing situation, the eligibility and coverage requirements of all

finding sources change from time to time. Overall

funding levels also change, and so the total amount

of available assistance varies over time.

The large number of potential sources of funding

for services, the complexity of their eligibility and

coverage requirements, changes in the rules and

overall funding levels, and uncertainty about whether

a person with dementia fits within the eligibility and

coverage requirements make it extremely difficult

for anyone to provide accurate information about

available funding (186,641,790). It is easy to understand in this context why families and others receive

wrong, partial, or no information about potentially

beneficial funding sources.

United Seniors Health Cooperative, a nonprofit

organization in Washington, DC, has developed a

computerized service that identifies an elderly

person’s potential eligibility for more than 50 local,

State, and Federal funding programs (799). This

service, called the ‘‘Benefits Outreach and Screening Service, “ is a promising approach to making

available accurate information about funding for

services. To use the Benefits Outreach and Screening Service, an individual completes a questionnaire

about his or her finances, medical condition, and

other information. That information is then fed into

a computer, which reviews the available funding

programs, identifies benefits the person may be

eligible for, and prints out a list of those benefits and

instructions on how and where to apply for them.

The software package for the service has been

purchased by a consortium of human service agencies in Buffalo, New York, and by agencies in 15

other areas of the country, including AAAs in

Virginia and county government agencies in Wisconsin. As of late 1989, the software was being

adapted for use in New York State, where it will not

only identify benefits the person maybe eligible for

but also print out completed applications for six

publicly funded programs (799).

6. The terms used for many services that

may be needed for people with dementia

are new to families and others. If families

and other caregivers do not understand

what the services are, information about

the availability of these services is meaningless to them.

For various reasons, the terms used for many

services that could benefit people with dementia

may not be understood by families and others (324).

Terms such as “respite care,” “congregate meals,”

‘‘case management,’ and “telephone reassurance”

are new to many families. Interestingly, OTA’s

contractors in Cuyahoga County found that even

some caregivers who had used case management did

not recognize the term (186).

The terms used for some services reflect the

requirements of their funding source, and not

necessarily the needs of patients or the actual

services provided. Examples are ‘homemaker’ and

“home health aide” (299,303). Medicare pays for

“home health aides” in certain circumstances but

rarely pays for ‘‘homemakers; the difference

%e complexity of the VA’s eligibility and coverage requirements is described inch. 6.
88 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

between the two is defined in Medicare regulations.

Many caregivers who need someone to help them

take care of a dementia patient at home are not

familiar with the Medicare regulations and do not

define their service needs in terms of those regulations. Such caregivers are not likely to understand

the difference between a “homemaker” and a

‘‘home health aide” without a clear explanation, and

as illustrated in the case of Mrs. Din chapter 1, some

service providers have difficulty explaining the

difference clearly. The biggest difference often is

who pays for the service, not what is provided.

Information and referral agencies often categorize

services according to the terms providers use for the

service. If someone calls an information and referral

agency for information about a service but uses a

different term for it than the provider uses, the

person may not be told about a potentially helpful

provider. Instead, the person may be told about

providers who call their service what the person said

he or she wants but may not offer what the person

actually needs.

Information about services is meaningless to

families and others who do not understand what the

services are. To make the information meaningful,

the service must be described and categorized in

terms relevant to patients’ and caregivers’ needs.

Categorizing services in a way that is relevant to the

needs of patients and families, however, is a difficult

task for information and referral agencies (183).

7. Proprietary concerns and agency turf

issues sometimes deter staff in one agency

from giving people information about

another agency’s services.

Although nearly 75 percent of the 24 agency

representatives interviewed in Cuyahoga County

said their agencies sometimes refer people to other

agencies for a service even if their own agency

provides it, OTA’s contractors concluded that most

of the agencies refer people to their own services

(186). This practice is to be expected because the

staff of a particular agency are most familiar with

their own agency’s services and because the services

of one’s own agency are often easiest to arrange. On

the other hand, referring a patient to the services of

an agency other than one’s own may be more

appropriate if the other agency is closer to the

patient’s home or offers services that are more

appropriate for the patient’s needs.

To say that proprietary concerns deter one agency’s

staff from giving people information about another

agency’s services implies that the first agency is

aware of the other agency’s services, knows they are

appropriate for the patient, and still does not refer the

patient or family to that agency. That was the

implication in some agency representatives’ complaints about hospitals that provide home care for

patients through their own home health care agency

until the patients’ third-party reimbursement runs

out and then refer the patients to another home care

agency (186).

A different problem occurs when one agency’s

staff members do not give people information about

another agency’s services because they are not

aware of the other agency’s services or do not

consider those services appropriate for a patient’s

needs. This situation is particularly likely to occur

when the two agencies are in different “systems.”

As discussed in chapter 1, most services for

people with dementia are provided in one of several

broad systems: the medical care system, the aging

services system, the mental health system, the social

service system, the public health system, and the

public assistance system. These systems are delineated by the Federal programs that fund them, the

training of people who work in them, and historical

divisions among State and local government agencies that administer the services. Although not

rigidly differentiated, the systems generally are not

integrated with one another.

For several reasons, referrals are more likely to

occur within a system than from one system to

another. One reason is that informal networking

between agencies often occurs only within a given

system, and service providers in one system may not

be aware of services in other systems. Another

reason is that service providers in the same system

tend to have a common perspective on dementia and

the appropriate care for people with dementia. Thus,

they may have greater understanding of and confidence in services provided by other agencies and

individuals in their system than in services provided

by other systems. Consequently, agencies in one

system, say the mental health or social service

system, may not refer people to services provided by

agencies in another system, say the aging services

system; and conversely, agencies in the aging

services system may not refer people to services
Chapter 2—The Need for Public Education and Information and Referral ● 89

provided in the mental health or social service

systems.

Proprietary concerns and agency turf issues sometimes interfere with the development of an accurate

list of available services. A list developed by someone in one system may not include services provided

by agencies in other systems. In addition, anecdotal

evidence suggests that some agencies do not want an

accurate list to be developed because they are afraid

they will lose clients to other agencies (611).

At the time of the study in Cuyahoga County,

proprietary agencies were not included in the

resource list of the countywide information and

referral agency (185). OTA does not know whether

proprietary and nonproprietary agencies constitute

separate systems in other areas of the country.

Clearly, beneficial services for persons with dementia are provided by both proprietary and nonproprietary agencies, and caregivers and others need to

know about services provided by both types of

agencies in order to make informed decisions about

the patient’s care.

The first steps in overcoming turf problems that

interfere with the availability of accurate information about services are to include all providers in the

resource list and to foster a sense of joint ownership

of the list. As discussed elsewhere in this report,

there is a general need for integration of services,

service providers, and systems.

Implications for an Effective System To Link

People With Dementia to Services

Given the large number of potential services,

service providers, and sources of funding and the

complex and changing rules that restrict their

availability, it is not surprising that families and

others sometimes receive wrong, partial, or no

information about services and funding for services

for people with dementia. The many agencies and

individuals that provide information and referrals for

people with dementia compound the potential for

error. Although some agency staff members, individual health care and social service professionals,

and service providers are undoubtedly more knowledgeable about available services than others, families and others who need help in locating appropriate

services have no way to tell the difference.

The discussion in this section has turned repeatedly to the importance of an accurate, comprehensive resource list. Without such a list, agency staff,

individual health care and social service professionals, service providers, voluntary associations, and

others that refer patients and families to services

must rely on informal networking and ‘‘hustle” to

keep current on available services. These methods

are helpful, but they are not sufficient in complex

service environments.

Most areas of the country have fewer agencies and

individual service providers than Cuyahoga County,

Ohio, and some communities may have so few that

a formal resource list is not necessary. In the course

of this assessment, however, OTA has been told by

many individuals that there are no services in a given

community, but later has been told by other sources

that there are some services, either in that community or readily available to its residents from a

nearby community. This situation has occurred most

often when, for example, the available services are

provided by a mental health agency and the individual is familiar with social service or aging network

agencies. OTA does not intend to suggest here that

sufficient services are available if all systems are

considered, but only to point out that even people

who are concerned about services for people with

dementia and think they know what is available in

their community may not be aware of some services.

Maintaining an accurate resource list is difficult

and requires a continuing commitment of resources.

Ideally, one agency in a community should maintain

the list and other agencies and individuals should

have access to it. To address caregivers’ concerns

about the location of services, lists for other than

very small communities should be formatted to

allow easy retrieval of information about service

providers in a given geographic area. To begin to

address some of the turf problems that interfere with

the availability of accurate information about services, the list should include all service providers and

be readily available for their use.

Computers make it easier now than in the past for

an agency to compile and update a resource list and

to make the updated version of the list available to

other agencies and individual service providers.

Special computer software, such as that used for the

previously described Benefits Outreach and Screening Service created by United Seniors Health

Cooperative (799), may be the only effective way to
90 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

keep track of the large number of funding sources

and the complex and changing eligibility and

coverage requirements that determine whether benefits are available to an individual.

The availability of an accurate and comprehensive

resource list would neither change the inherent

complexity of the service environment at the community level nor make up for lack of services. It

would improve access, however, and, by letting

people know what services exist, it would allow for

more appropriate use of services. Likewise, the

availability of accurate information about funding

for services would neither change the inherent

complexity and fragmentation of public and private

programs that pay for services nor make more

funding available. It would increase the likelihood

that people receive benefits for which they are

eligible, and it would allow families and others to

plan realistically for the care of people with dementia. The process of compiling and maintaining an

accurate resource list also could aid in efforts to

identify gaps in services and funding for services for

people with dementia.

If a single agency in a community were designated

to maintain an accurate resource list, the designated

agency would not have to be the source of all

referrals or the single access point for services. The

desirability of establishing a single access point for

services in each community has been debated by

many investigators (see, e.g., Callahan, 1981 (104),

and Piktialis and Callahan, 1986 (661)). Some

service providers fear that if a single agency is

designated to maintain the resource list, that agency

will control referrals and may discriminate against

certain providers (61 1). If the single agency were

required to make the resource list widely available,

however, other agencies, individual health care and

social service professionals, voluntary associations,

and others could use it themselves to make referrals.

The findings from Cuyahoga County, Ohio, and

elsewhere suggest that people with dementia are not

always identified as such by agencies that provide

information and referrals (186,756). In the past

decade, the awareness of Alzheimer’s and other

dementias has increased greatly among health care

and social service professionals and service providers. Nevertheless, some people who provide information and referrals are not trained or predisposed to

identify dementia in their clients. A system to link

people with dementia to services must include

mechanisms for identifying people with dementia if

it is to provide appropriate information to such

people or refer them to appropriate services.

Lastly, OTA’s contractors found that most of the

agencies that responded to the survey in Cuyahoga

County do not have systematic procedures to followup on referrals to make sure patients receive needed

services (186). The lack of followup procedures does

not pertain to the availability of accurate information

about services, the topic of this section, but it is

relevant to a different question: If accurate information about services for people with dementia is

available, can patients, families, and others use it to

locate and arrange the services they need? That

question is touched on in the following section and

discussed in detail in chapter 3. OTA’s contractors

in Cuyahoga County noted a difference between the

kind of referral support, including followup, received by people who are considered clients of an

agency and the referral support received by people

who just get information and referrals over the

telephone (186). Patients and families who need

assistance to follow through on a referral are more

likely to receive it if they are considered clients of

the referring agency. In either case, however, without systematic followup procedures, an agency that

provides information and referrals is unlikely even

to know which of the people it has referred to

services actually needed more help to follow

through on the referrals. Systematic follow-up

procedures are essential to keep such people from

“falling through the cracks.”

WHAT IS SPECIAL ABOUT THE

INFORMATION AND REFERRAL

NEEDS OF PEOPLE WITH

DEMENTIA

Many aspects of the information and referral

process are similar for individuals with dementia

and individuals with other conditions, but there are

some differences that are relevant to developing an

effective system to link people with dementia to

services. Several of these differences are identified

in the following discussion, which draws on the

observations of administrators of State information

and referral programs, an analysis of data on callers

to the “Home Help Line” of the Benjamin Rose

Institute in Cleveland, and some findings from the

caregiver interviews that were part of the study

conducted for OTA in Cuyahoga County, Ohio.
Chapter 2—The Need for Public Education and Information and Referral ● 91

Comments by Administrators of State

Information and Referral Programs

Comments to OTA by the administrators of some

State information and referral programs suggest that

calls made about services for people with dementia

often require more time than calls about services for

other people. The director of Alzheimer’s Information Services in Massachusetts, for example, has told

OTA that calls received by the State’s Alzheimer’s

telephone information and referral program usually

last much longer than calls received by the State’s

general information and referral program for elderly

people (121). He estimates that whereas calls to the

State’s general information and referral program for

elderly people usually last only a few minutes, calls

to the Alzheimer’s information and referral program

typically last about 20 minutes and sometimes last as

long as an hour and a half.

An administrator in the Oklahoma Special Unit on

Aging that has a telephone information and referral

program for elderly people has told OTA that people

who call the program for a person with dementia

usually want more than information and referrals

(544). He says that people calling for a person with

dementia are much more likely than people calling

for a nondemented elderly person to “want to talk.”

The director of the North Carolina Alzheimer’s

telephone information and referral program also

says that people who call that program often want

more than information and referrals (290). Her

perception is that many callers want help in understanding dementia and defining the patient’s service

needs, as well as information and referrals.

An Analysis of Data on Callers to the

Benjamin Rose Institute’s Telephone

Information and Referral Program

OTA is not aware of any research that specifically

compares the process of information and referral for

people with dementia to the process for nondemented people. In the absence of such research, the

OTA contractors who performed the study in Cuyahoga County, Ohio, analyzed data that was collected

in 1984 and 1985 on people who had called the

Benjamin Rose Institute’s telephone information

and referral ‘Home Help Line’ in those years (186).

The Benjamin Rose Institute is a nonprofit agency in

Cleveland, Ohio, that conducts research and provides health care, social services, and residential

care for elderly people.

OTA’s contractors compared data on two groups

of people who had called Benjamin Rose Institute’s

Home Help Line:

●

●

30 individuals who had called the Home Help

Line for an elderly person with a mental

impairment (e.g., Alzheimer’s disease, mental

illness, brain damage, forgetfulness, confusion,

or senilitylO); and

116 individuals who had called the Home Help

Line for an elderly person with a physical heal&

condition and no mental impairment (186).

OTA’s contractors found several differences between the two groups of callers that point to special

aspects of the information and referral process for

people with dementia (186). First, more than onethird (36 percent) of the physically impaired people

called the Home Help Line themselves, but none of

the mentally impaired people did. This finding

illustrates the limited capacity of people with a

mental impairments to contact an information and

referral source for themselves and supports the

conclusion of this OTA assessment that an information and referral program is not itself sufficient to

link people with dementia to services; as discussed

in chapter 3, people with dementia who have no

family member or other informal caregiver to help

them may require outreach and case management.ll

People who had called the Home Help Line for a

mentally impaired person were more likely than

people who had called for a physically impaired

person to have previously contacted another agency

that could not provide the needed assistance. The

two groups of callers also differed in their reasons

for calling the Home Help Line. People who had

called for a mentally impaired person were more

likely than people who had called for a physically

impaired person to say:

. that they needed help in deciding what types of

services would be most helpful;

. that they needed to know what services Medicare and Medicaid cover; and

l~e de~tion of men~ imp~ent fi tie Benj~ Rose Institute’s data set included mental illness * well x dementi% SO the find@ do not

pertain only to people with dementia.

llFor o~>s analy.sis in SUppOrt of this conclusion, .%% Ch. 3.

89-1.50 - 90 - 4
92 • Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

. that they needed help in knowing what tasks

they could expect someone they hired to do

(186).

Another difference between the two groups was in

the percentage of people in each group who made it

through various steps in the process of getting

services. OTA’s contractors identified five steps in

that process:

1. contacting an information source to obtain a

referral;

2. receiving the name of a service provider;

3. contacting the provider;

4. finding that the provider actually offers the

needed service; and

5. using the service (186).

When OTA’s contractors compared people who had

called the Home Help Line for a mentally impaired

person and people who had called for a physically

impaired person in relation to these steps, they found

two differences (186). First, the percentage of people

who received a referral was smaller for people who

had called for a mentally impaired person (79

percent) than for people who had called for a

physically impaired person (86 percent). Second, the

percentage of people who ended up using the service

to which they were referred was smaller among the

mentally impaired people (11 percent) than among

the physically impaired people (19 percent).

OTA’s contractors also found that the people who

had called the Home Help Line for a mentally

impaired person were more likely than people who

had called for a physically impaired person to say

that they were having difficulty providing care (e.g.,

were not able to continue giving the same amount of

assistance they had been giving or did not have

enough time or energy to provide the care needed)

(186). Research indicates that the caregivers of

cognitively impaired people are generally more

stressed than caregivers of physically impaired

people (161,296,415,612). The finding that people

who called the Home Help Line for a mentally

impaired person were more likely to have problems

providing care suggests that providers of information and referral for people with dementia must be

especially attentive to the needs of caregivers.

Findings From Interviews With Caregivers

in Cuyahoga County, Ohio

As noted earlier, the OTA-commissioned study in

Cuyahoga County, Ohio, included interviews with

26 caregivers who called the Cleveland Alzheimer’s

Association Chapter’s telephone helpline between

April and July 1988 (186). Many of the 26 caregivers

said they had been unsure at the time they called the

helpline about what service they needed, and half of

them said they had called the helpline for assistance

in deciding what types of services would be most

helpful. Six caregivers (23 percent) said they had

called to find out what services Medicare or Medicaid cover. Several caregivers said they had called

the Alzheimer’s helpline just to talk, and many

seemed to be reaching out for emotional support and

reassurance.

Eleven (42 percent) of the 26 caregivers had

previously contacted other agencies, including information and referral agencies, diagnostic centers,

social service agencies, hospitals, and nursing homes.

One spouse who was looking for day care said, “I

was not able to find anything out. ’ A daughter said

she had called hospitals and other agencies and that

her call to the helpline was motivated by “complete

frustration. ” Another daughter said, “I called numbers from the telephone book—it was a waste of

time. ’

Although not all of the 26 caregivers had called

the Alzheimer’s helpline for a referral, 23 caregivers

received the name of one or more service providers

(186). Of these 23 caregivers, almost half (11

caregivers) did not subsequently contact the service

provider(s) recommended. The caregivers who did

not contact the recommended service provider(s)

gave a variety of reasons. Two of them cited the

anticipated cost of the service; a third decided she

did not need the service yet; and a fourth said she did

not contact the recommended provider because “the

phones at the agencies were not answered or the line

was busy. ” In one case, a granddaughter had

received referrals for day care and nursing homes for

her grandmother, but her parents were not willing to

act on the recommendations she received. In another

case, a son caring for his 83-year-old mother felt that

the referral he received did not go far enough: “I was

told to find a doctor on my own and was sent a list

of hospitals. I didn’t contact any of them because no

one recommended a specific doctor.’
Chapter 2—The Need for Public Education and Information and Referral ● 93

Of the 12 caregivers who did contact the recommended service provider(s), 9 caregivers reported

that the provider(s) actually offered the needed

service, and all 9 used the service (186). The other

three caregivers who contacted the recommended

service provider found that the provider did not have

the service they needed. Two of the three said the

hours that services were offered by the provider did

not meet their needs. The third caregiver who was

caring for her mother who had both dementia and

cancer felt that no agency she contacted provided the

kind of care her mother needed.

The percentage of caregivers who advanced

through the five steps in the process of getting

services and actually used the service(s) to which

they were referred was larger among the caregivers

who got a referral from the Cleveland Alzheimer’s

Association Chapter’s helpline (35 percent) than

among people who contacted the Benjamin Rose

Institute’s Home Help Line (11 percent) (186).

Although the reasons for this difference are unclear,

it maybe attributable to one or more of the following

factors: 1) as a helpline operated by a dementiaspecific organization, the helpline operated by the

Cleveland Alzheimer’s Association Chapter may

attract callers with more clearly defined needs than

the Home Help Line of the Benjamin Rose Institute;

2) caregivers who contact the Alzheimer’s Association helpline may be in more immediate need of

services than caregivers who call the Benjamin Rose

Institute; 3) the person who staffs the Alzheimer’s

Association helpline may provide comparatively

more support to callers, thus encouraging them to

follow through on referrals; 4) the service providers

to which Alzheimer’s Association helpline callers

are referred may be more appropriate for the needs

of people with dementia; or 5) the callers to the

Alzheimer’s Association’s helpline may regard the

helpline as a source of expertise about the special

needs of a person with dementia, thus adding to the

credibility of the referral.

Implications for an Effective System To Link

People With Dementia to Services

The preceding discussion of special aspects of the

information and referral process for people with

dementia suggests that the information and referral

component of a system to link people with dementia

to services must meet certain requirements in order

to function effectively. In particular, the staff of the

information and referral program must be able to

spend enough time to understand the individual

caregiving situation and to help the caregiver define

the patient’s care needs and determine what types of

services would be helpful. In addition, the staff must

be:

●

●

●

●

knowledgeable about dementia and the care

needs of people with dementia;

knowledgeable about services for people with

dementia;

able to provide accurate information about

eligibility and coverage for services that may

be needed for people with dementia through

Medicare, Medicaid, and other funding sources;

and

attuned to the stresses associated with caring

for a person with dementia and the difficulties

dementia caregivers may have already encountered in trying to obtain accurate information

about services and funding for services.

These requirements define what it would mean for

an information and referral program to be dementiacapable. Some people believe that only a dementiaspecific information and referral program, i.e., a

program that serves only people with dementia and

their caregivers, could meet the requirements. Most

of the members of the advisory panel for this OTA

assessment concluded that an information and referral program that serves other elderly and disabled

people as well as people with dementia could meet

the requirements, but only with explicit recognition

of the special information and referral needs of

people with dementia, a commitment to serve such

people, and special training for the staff.

WHAT IS SPECIAL ABOUT THE

INFORMATION AND REFERRAL

NEEDS OF ETHNIC MINORITY

PEOPLE WITH DEMENTIA

Ethnic minority people with dementia and their

families face all the same problems in obtaining

accurate information about services and about funding for services as other people, but they also face

additional problems due to language and cultural

differences and demographic factors. At the start of

this assessment, OTA could not find any research on

information needs or information and referral procedures for ethnic minority people with dementia.

Several studies of ethnic minority people in general

have found that lack of information interferes with
94 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

their use of services (see, e.g., Guttman, 1980 (284);

and Holmes, et al., 1979 (329)). On the other hand,

a telephone survey of 1,608 black, Puerto Rican,

Mexican-American, and other white people found

little difference among three of these groups (blacks,

Mexican-Americans, and other whites) in their

knowledge about services and funding for services

(330). Only the Puerto Rican group was significantly

less likely to know about services and funding for

services.

In 1988, to determine how ethnic minority people

with dementia are linked to services and to identify

any special problems that may arise in the linking

process for them, OTA commissioned an exploratory study in California (866). That study is described in the next section and its implications for an

effective system to link ethnic minority people with

dementia to services are discussed.

Findings From a Study of Four Ethnic

Minority Groups in Two California Counties

The OTA-commissioned study of how ethnic

minority people with dementia are linked to services

was conducted in two counties in California (Los

Angeles and San Diego Counties) (866). OTA’s

contractors conducted interviews with families and

other informal caregivers of black, Hispanic, Japanese, and American Indian people with dementia

and with staff members of agencies that provide

services for people in the four ethnic groups. After

they compiled the results of the interviews, the

contractors and OTA staff met with some of the

interviewers and service providers from three of the

four groups-blacks, Hispanics, and Japanes--in

order to discuss the findings and their policy

implications. Unfortunately, they were unable to

arrange a meeting with the American Indian service

providers in the time available for the the study.

Several limitations of the study in California

should be noted. First, the study sample does not

represent all ethnic minority groups. OTA’s contractors had hoped to include Chinese and Korean

caregivers to broaden the Asian-American sample,

but the necessary interviews could not be arranged.

Many other groups also could have been included,

since there are more than 100 ethnic groups in the

United States (491,792). Second, even for the groups

that were studied, the sample is not representative.

People with dementia who have no informal caregiver were not included in the study, for example.

Lastly, the sample is composed largely of patients

and caregivers who were successfully linked to

services. Patients and caregivers who are not receiving services are underrepresented (866). Thus, the

findings of the study in California depict a “best

case scenario’ with respect to linking ethnic minority people with dementia to services. The study did

identify many problems, though, and it provides

useful insights into the information needs of ethnic

minority people with dementia and their caregivers.

To OTA’s knowledge, it is the only source of data on

this topic.

OTA’s contractors interviewed 88 ethnic minority

caregivers, including 35 blacks, 25 Hispanics, 18

Japanese, and 10 American Indians (866). The study

questionnaires were translated into Spanish and

Japanese, and the interviewers for the Hispanic and

Japanese caregivers were bilingual. Even though

most of those caregivers were bilingual, they generally preferred to be interviewed in their native

language. The black and American Indian caregivers

were interviewed in English.

As shown in table 2-4, when asked if they knew

about specific services, the majority of the ethnic

minority caregivers said they knew about the following services: diagnosis and other physicians’ services, transportation, home health care, homedelivered meals, nursing homes, chore services,

information and referral, financial counseling, and

mental health services (866). Less than half of the

caregivers said they knew about adult day care, paid

companion, protective services, and legal services.

The results of in-depth interviews with the caregivers indicate that these responses reflect service

consciousness (i.e., general awareness of services)

rather than service knowledge (i.e., knowledge of a

specific provider in the community) (865).

OTA’s contractors found considerable variation

among the four ethnic groups with respect to the

percentage of caregivers who said they knew about

each service (866). Some of the variation may have

been due to differences in the types of services

provided by the agencies from which the individuals

were receiving services. Quite possibly caregivers

know more about services of agencies to which they

are connected than about services of other agencies.

Moreover, some services are more readily available

to some groups than to others.
Chapter 2—The Need for Public Education and Information and Referral ● 95

Table 2-4-The Percentage of Ethnic Minority Caregivers Who Said They Know About Certain Services,

Los Angeles and San Diego Counties, California, 1988

Total sample Blacks Hispanics Japanese American Indian

Service (N= 88) (N= 35) (N= 25) (N= 18) (N= 10)

Physicians’ services . . . . . . . . . . . . . . . . . . . . . . . . 85%. 74% 100% 89% 89%

Diagnosis . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . 64 71 96 33 56

Transportation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 80 66 100 72 90

Home health care . . . . . . . . . . . . . . . . . . . . . . . . . . . 77 66 88 78 90

Home-delivered meals . . . . . . . . . . . . . . . . . . . . . . 77 63 92 78 90

Nursing home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68 77 100 95 90

Chore services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 77 84 50 20

Financial counseling . . . . . . . . . . . . . . . . . . . . . . . . 63 43 80 77 78

Information & referral . . . . . . . . . . . . . . . . . . . . . . . . 60 45 64 61 56

Mental health services . . . . . . . . . . . . . . . . . . . . . . . 55 34 76 61 60

Adult day services . . . . . . . . . . . . . . . . . . . . . . . . . . 41 26 44 56 60

Paid companion . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 20 68 39 33

Protective services . . . . . . . . . . . . . . . . . . . . . . . . . 38 34 56 28 22

Legal services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 17 52 44 56

SOURCE: R. Vane, L. Birba, J. Yelder, et al., “Linking of Ethnic Minority Elderly With Dementia to Long-Term Care Servicce,” contract report prepared for the

Office of Technology Assessment, U.S. Congress, Washington DC, 1989.

Many of the ethnic minority caregivers interviewed by OTA’s contractors said they needed each

of the services mentioned (866). The caregivers were

asked in this context how they would find out about

and arrange a service they needed. Surprisingly, in

this sample of caregivers, most of whom were

connected to agencies already, only 17 of the 88

caregivers (19 percent) said they would contact an

agency for assistance in locating and arranging the

service. Most of the other caregivers said they would

try to find out about and arrange the service

themselves or ask a family member for help in

locating and arranging the service. Some caregivers

did not answer the question, thus suggesting that

they did not know how they would find out about or

arrange the services they needed.

The interviewers concluded that although most of

the 88 ethnic minority caregivers were linked to an

agency already, they had no concept of a process by

which they might obtain help in locating and

arranging services (866). Even caregivers who

reported knowing about information and referral

programs (60 percent of the sample) said they would

turn internally to themselves or their families for

help in locating and arranging services. The interviewers came away with the impression that these

apparently “connected’ caregivers were still quite

isolated from formal sources of help.

OTA’s contractors interviewed 48 individuals

who provide services for the 4 ethnic minority

groups in the two California counties: 19 black

service providers, 8 Hispanic service providers, 7

Japanese service providers, 7 American Indian

providers; and 7 other white service providers (866).

Sixty-six percent of the 48 service providers had

worked for at least 3 years with ethnic minority

people with dementia.

The service providers interviewed by OTA’s

contractors said that many ethnic minority caregivers in their areas have very little knowledge about

dementia (866). The service providers also said that

with some exceptions, knowledge about dementia is

quite limited among the staff of agencies that serve

ethnic minority people in the areas studied. Among

the 48 service providers who were interviewed by

OTA’s contractors, 55 percent rated their own

knowledge about dementia as moderate, while 40

percent rated their knowledge as high and 6 percent

rated their knowledge as low.

The service providers who were interviewed said

that dementia frequently is not identified in ethnic

minority people for a variety of reasons:

●

●

●

because families regard patients’ cognitive

deficits and behavioral problems, if any, as part

of normal aging;

because families feel there is a stigma attached

to some symptoms of dementia and hide the

patients; and/or

because health care and social service professionals and service providers who interact with

patients are not trained to identify dementia

(866).
96 ● confused With, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

On the other hand, most of the ethnic minority

caregivers interviewed for the study said the person

they were caring for had been formally evaluated

and diagnosed as having dementia (866). This

included 40 percent of the American Indian patients,

60 percent of the black patients, 56 percent of the

Japanese patients, and 84 percent of the Hispanic

patients. The service providers considered these

percentages unusually high for the communities.

The overall impression of the interviewers and

OTA’s contractors was that the problem of dementia

is only one of many problems facing service

providers in ethnic minority communities. Available

resources are stretched thin, and agencies are overwhelmed by many urgent needs. Understandably,

many service providers regard dementia as just one

more problem to handle with limited funds and staff

capability. In fact, some service providers seemed to

regard the available resources for the care of people

with dementia as so limited that there was no

practical reason for identifying dementia in their

frail elderly clients.

Implications for an Effective System To Link

Ethnic Minority People With Dementia

to Services

The interviews with ethnic minority caregivers

and service providers in the OTA-commissioned

study in California (866) and the interviewers’

comments in meetings with OTA staff suggest four

areas of consensus about special information needs

and information and referral procedures for ethnic

minority persons with dementia and their caregivers.

Those four points are discussed below.

1. Information about dementia and about

services for people with dementia should

be available in the native language of

patients and caregivers.

As noted earlier, the Hispanic and Japanese

caregivers interviewed in the California study were

bilingual but they generally preferred to be interviewed in their native language. Many of the people

they were caring for spoke Spanish or Japanese

exclusively. It was the consensus of the interviewers, service providers, and OTA’s contractors that

these patients and caregivers and others like them

would have much greater difficulty understanding

information about services and about funding for

services or would be completely unable to understand the information if it were in English rather than

in Spanish or Japanese.

An example of the differential impact of information presented in English v. the caregivers’ native

language occurred in the fall of 1988, at the Little

Tokyo Service Center, an agency in Los Angeles

that provides services for Japanese people of all

ages. Concerned about Japanese caregivers’ lack of

knowledge about dementia, a social worker at the

Little Tokyo Center arranged two informational

meetings for caregivers, a week apart, one to be

conducted in English and one in Japanese. For both

meetings, the main speaker was a Japanese neurologist who is well known in the community. Whereas

10 people attended the meeting conducted in English, 60 attended the meeting conducted in Japanese.

During the latter meeting, several caregivers expressed strong interest in setting up a support group

for caregivers. The same interest was not expressed

in the other meeting (739).

One Hispanic interviewer told OTA about caregivers she interviewed who had gone to a local

government agency to apply for public assistance

and medical assistance and did not understand why

they had been turned down. The interviewer’s

opinion was that even though the caregivers spoke

and understood some English, they did not do so

well enough to understand the complex eligibility

requirements for these publicly funded programs.

Her impression was that the families were very poor

and probably eligible for assistance, so she suggested that they appeal. They did not do so, she said,

because they did not think they could speak English

well enough to present their case effectively to the

agency staff (262).

The Los Angeles County Department of Social

Services has an Asian unit with case workers who

speak Japanese, Chinese, Korean, and Vietnamese

to process applications for public assistance and

medical assistance (739). OTA does not know

whether there is a similar unit with Spanishspeaking case workers, but the department does have

Spanish-speaking case workers in some offices

(865).

While visiting agencies for the study in California, OTA’s contractors noted a lack of printed

materials in languages other than English about

Alzheimer’s disease, dementia, and services for

people with dementia-a lack which contrasted with

an extensive array of non-English-language printed
Chapter 2—The Need for Public Education and Information and Referral ● 97

materials on other health and mental health problems. In the opinion of OTA’s contractors, the lack

of non-English-language printed information about

dementia is one of the biggest problems preventing

access of ethnic minority people with dementia to

appropriate services (866).

The Alzheimer’s Association has recently translated some of its brochures into Spanish and is

distributing them. The social worker at the Little

Tokyo Service Center, frustrated by the lack of any

information about Alzheimer’s disease in Japanese,

translated an Alzheimer’s Association pamphlet

herself in the fall of 1988 (739). Translating these

materials into many different languages and promptly

distributing the products would appear to be both an

achievable objective and a minimum requirement

for linking ethnic minority people with dementia and

their caregivers to services.

It is not known how many ethnic minority people

with dementia or their caregivers need information

in a language other than English. Elderly people are

more likely than younger people to use their native

language (862). Since most patients and many

caregivers are elderly, the need for information in

other languages may be widespread. In fact, Census

Bureau data indicate that among elderly people who

speak Japanese at home, 53 percent do not speak

English well or do not speak it at all. Likewise,

among elderly people who speak Spanish at home,

61 percent do not speak English well or do not speak

it at all (863).

2. Information about dementia and about

services for people with dementia must be

culturally appropriate.

The cultural heritage, traditions, customs, and

beliefs of an ethnic group affect how and when

members of the group perceive the problem of

dementia, who is expected to be the caregiver, what

that person’s responsibilities are, whether formal

services are acceptable, and how and when they are

sought (160,315,864). All these factors are relevant

to the information needs of ethnic minority people

with dementia and their caregivers. In particular,

these factors influence what information about

dementia, services, and service providers is meaningful and appropriate for them.

It has been suggested, for example, that memory

loss and other cognitive deficits associated with

dementia are noticed sooner by and are more

troublesome to groups that place high value on

cognitive and intellectual functions than to groups

that place high value on affective or emotional

functions. The latter groups are more likely to be

troubled by personality changes associated with

dementia or by the failure of the demented person to

fulfill his or her accustomed role in the family (237).

If information about dementia is to be meaningful to

ethnic minority people, it must focus on the aspects

of the problem that are troublesome to them. The text

of pamphlets and other informational materials

should reflect these differences (863).

Cultural factors also are relevant in selecting

appropriate service providers for ethnic minority

people with dementia. Many of the ethnic minority

caregivers interviewed for the study in California

were using services from agencies that primarily

serve one ethnic minority group (866). Staff of these

agencies often are members of the same ethnic

group, and the services are adapted in various ways

to that group’s customs and values.

The ethnic minority service providers who were

interviewed in California emphasized the importance of the cultural appropriateness of services

(866). Sixty-six percent of the 48 service providers

interviewed said that in their experience, an agency’s

failure to respond to cultural values and concerns

was a common barrier to the use of the agency’s

services by ethnic minority people. In order to refer

patients and families to appropriate service providers, an information and referral agent must be aware

of their cultural background and knowledgeable

about agencies’ and individual providers’ capacity

to serve people of different cultural backgrounds.

3. Information about dementia and about

services for people with dementia must be

tailored to demographic differences among

and within ethnic minority groups.

Demographic factors, such as income and educational background, vary both among and within

ethnic minority groups. Although the four ethnic

minority groups studied by OTA have lower average

incomes than the majority population, not all ethnic

minority people have low incomes. The same is true

for educational background. Whereas cultural factors are specific to a particular ethnic group,

demographic factors cut across ethnic groups (866).

The combination of language and cultural differences among ethnic groups and demographic differ-
98 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

ences among and within ethnic groups creates a

complicated mix of information needs.

Ethnic minority people in groups that have

relatively low incomes are likely to be eligible for

means-tested services and benefits (492,455). Accurate information about these services and benefits is

clearly important for them. On the other hand,

information and referral agents cannot assume that

individual ethnic minority people have low incomes

or that they have a special need for information about

means-tested programs.

The educational background of patients and

families is relevant to the content, “pitch,” and

format of printed information about dementia and

services for people with dementia (866). Public

education messages for radio, television, and other

nonprint media also must take into account the

formal educational background of the intended

audience. OTA’s contractors found that educational

background varied greatly both among and within

the four groups of ethnic minority caregivers interviewed in San Diego and Los Angeles Counties.

To create informational materials that reflect the

mix of language, cultural, and demographic differences among ethnic minority people requires extensive knowledge of the intended audience. One

Hispanic service provider in Los Angeles has

created a Spanish-language “foto novela” (picture

book) about Alzheimer’s disease and dementia. The

picture book format and the pitch of the text are

intended for a segment of the Spanish-speaking

population that is not reached by Alzheimer’s

Association pamphlets that have been translated into

Spanish. The content of the book, a page of which is

shown in figure 2-2, reflects values, customs, and

experiences that are common to MexicanAmericans. According to the author, different text

and illustrations would be needed for Spanishspeaking Cuban-Americans (146)

4. Information about dementia and services

for people with dementia must be available through the existing ethnic minority

community infrastructure and ethnic minority agencies, where there are such agencies.

For cultural, demographic, and historical reasons,

many ethnic minority people live in communities

largely composed of members of the same group. In

these communities, there is generally an infrastructure of individuals and associations that are recognized by the community as sources of information

and assistance with a wide range of problems

(380,867). Some communities also have agencies

that primarily serve one ethnic group in that

community. If information about dementia and

about services for people with dementia is to reach

patients and their caregivers in these communities,

it must be available through these individuals,

associations, and agencies.

It may not be obvious to outsiders which individuals and associations are recognized by an ethnic

minority community as sources of information and

assistance. The individuals’ occupations and the

associations’ stated objectives may have no apparent

connection with care of people with dementia. Yet

information distributed through other, seemingly

more appropriate channels, is less likely to reach

those that need it or to be accepted by them (862).

The importance of the church as a source of

support and assistance in black communities is

widely recognized (642,770,782), and some commentators have suggested that churches in those

communities could provide information about services or refer people with dementia and their caregivers to other sources of information (750). Service

providers in Los Angeles County told OTA’s

contractors that pastors of some black churches are

enthusiastic about learning about dementia and

making information available to their members. On

the other hand, some caregivers cannot leave the

person with dementia alone and therefore cannot be

involved in church activities (160). Other black

caregivers are not connected to a church, and

alternate ways of reaching these caregivers also are

needed.

Although churches in black communities may

play a role in providing information or referring

people to sources of information about dementia and

services for people with dementia, churches in some

ethnic minority communities are unlikely to play

such a role. A study of elderly Vietnamese immigrants in two Texas communities found, for example, that 90 percent of the respondents said their

church or temple was important to them, but none

said they would turn to it for help with a problem

(165). They regarded the church or temple as a

spiritual and cultural institution and said they would

turn to public agencies for information and assistance.
Chapter 2—The Need for Public Education and Information and Referral ● 99

(%

a

c

.-

~

a
100 . Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Clearly, not all ethnic minority people live in

communities largely composed of one ethnic group.

Making information about dementia and about

services for people with dementia available to

geographically dispersed ethnic minority people

undoubtedly is more difficult than making it available in self-contained minority communities. The

study conducted for OTA in Los Angeles and San

Diego Counties did not address this problem, and

OTA has not looked into methods that have been

used successfully to provide information about other

health problems for geographically dispersed ethnic

minority people.

PHYSICIANS’ ROLE IN

REFERRING PATIENTS AND

CAREGIVERS TO SERVICES

As discussed in the beginning of this chapter,

many families and other informal caregivers say that

physicians are not knowledgeable about services for

people with dementia and do not refer patients and

their caregivers to services (125,257,412,497,500,

531,599,934). For example, three-quarters of the

100 family caregivers interviewed for the Connecticut Governor’s Task Force on Alzheimer’s Disease

in 1988 said that at the time of diagnosis, the

patient’s physician did not refer them to any services

(479).

Although other health care and social service

professionals also may not be knowledgeable about

services for people with dementia and may not

provide appropriate referrals, the focus of caregivers’ complaints has been on physicians—

probably because of caregivers’ expectations for

physicians. A physician is usually the one who tells

the caregivers the patient’s diagnosis, and since

physicians often refer all kinds of patients for other

medical services at the time of diagnosis, caregivers

may expect the physician to refer them to services.

Similarly, throughout the course of a patient’s

illness, caregivers are likely to turn to the physician

when there are changes in the patients condition and

problems they cannot handle (292). They hope and

often expect that the physician will be able to

provide solutions, including referrals to appropriate

services. If that does not happen, the physician may

get blamed. Other health care and social service

professionals who might provide referrals seem to

get blamed less often—probably because patients,

families, and others do not have the same expectations for them.

Physicians are in a difficult position with respect

to providing information and referrals for their

patients with dementia. The literature identifies

many other tasks for physicians who are treating

people with dementia, even without considering the

task of providing information and referrals. The

identified tasks include making a diagnosis; treating

any intercurrent illness; managing the patient’s

medications; offering emotional support for families

and other informal caregivers; and providing education and counseling for caregivers about the patient’s diagnosis and prognosis and caregiving

techniques to reduce patients’ behavioral problems

and maintain patient functioning (74,154,292,300,

368,679,915). As discussed earlier in this chapter,

helping caregivers of people with dementia identify

their service needs and select a service provider is

often time-consuming. In addition, in many communities, there is no source of accurate, comprehensive

information about what services are available, and

the service environment is so complex that it is

difficult and time-consuming for anyone to keep

current on available services. Given existing constraints on physicians’ time, it may be unrealistic to

expect physicians to provide information about

services and referrals to services for their patients

with dementia.

On the other hand, many caregivers expect

physicians to provide information and referrals.

Moreover, given the general feeling of respect for

physicians, caregivers are probably more likely to

use services if they have been referred to the services

by a physician than by someone else. As discussed

in chapter 3, some caregivers of people with

dementia feel guilty about using services and believe

that they should provide all the patient’s care

themselves. This feeling is compounded for some

caregivers by doubts about whether the patient is

really “sick” and, therefore, whether the use of

services is justifiable. In the eyes of these caregivers,

a physician’s referral may give legitimacy to their

use of services (290,931).

Discussions about physicians’ role in providing

referrals for dementia patients and their caregivers

generally do not distinguish between a physician

furnishing information about community services

and referrals to specific providers and a physician

referring patients and their caregivers to another
Chapter 2—The Need for Public Education and Information and Referral . 101

source of information and referrals. Some commentators suggest that physicians should act as the

coordinator or manager of services for people with

dementia. Winograd and Jarvik say, for example:

In addition to providing medical care and psychologic support, the physician can play a pivotal

role in developing comprehensive plans for demented patients with the aid of other health professionals (e.g., discharge planners and visiting nurses).

Social workers can assist with referral to the

appropriate resources. . . (915).

This statement implies that the discharge planner,

visiting nurse, and social worker should be the

sources of information about specific service providers.

Many commentators recommend a multidisciplinary team approach to care of people with dementia

(56,257,292,679,915). In that approach, a physician

may discuss potentially beneficial services with

caregivers and recommend their use, but the task of

identifying service providers usually is performed

by a social worker, nurse, or another team member.

Most physicians do not practice as part of a

multidisciplinary team, however. If their patients

and the patients’ caregivers are to receive information about services and referrals to service providers,

the physician must either furnish them or refer the

caregivers to another source of information and

referrals.

Some and perhaps many physicians may prefer

not to be the primary source of information and

referrals for their patients with dementia. A study of

physicians’ roles in treating people with dementia

asked 57 physicians to rate the relative difficulty of

various tasks involved in caring for these patients

(257). The study’s findings show that the physicians

considered helping patients and their families obtain

health care and social services and advising them

about nursing home placement among the most

difficult and time-consuming tasks in treating these

patients. The 47 family caregivers interviewed as

part of the study said that physicians were least

helpful in these areas. The researchers concluded

from the physicians’ spontaneous comments during

the interviews that some of the physicians made a

distinction between coordinating medical services

and social services and did not regard referrals for

social services as their responsibility.

It is often said that physicians know less about and

refer patients less frequently to social services than

to medical services (125,133,257,927). It is also said

that some physicians are not knowledgeable about

home care services and sometimes recommend

nursing home placement when the patient could be

cared for at home with available services (500,934).

The same observations have been made with respect

to physicians’ knowledge of and referrals to services

for elderly people in general, and the findings of

some studies support these observations (661,927).

Some AAAs have attempted to increase physicians’ awareness of services and encourage physicians to refer elderly people and people with

dementia to an AAA for information and assistance

with arranging services (934,944). Sometimes these

efforts are initially successful. Referrals by physicians to the AAA increase for a time but then drop

off. It is not clear why this occurs. Some physicians

may not be convinced of the value of certain services

for their patients, or their referrals to the AAA may

not work in some way that leads them to stop

referring.

The distinction between service consciousness

and service knowledge that was made earlier in this

chapter with respect to caregivers’ knowledge about

services may be helpful in thinking about physicians’ knowledge about services and their role in

providing information and referrals for people with

dementia. If physicians have service consciousness

(i.e., they are aware of the types of services that may

be useful for people with dementia) but lack service

knowledge (i.e., they do not know what specific

agencies or individuals provide the services in the

community), they still can talk with caregivers about

potentially beneficial services and encourage the

caregivers to use appropriate services. Then they

will have to refer the patients and caregivers to

someone who is knowledgeable about the details of

service availability in the community. If, on the

other hand, physicians lack service consciousness

(i.e., they are not aware of the types of services that

may be useful for people with dementia), they will

not be able to refer or advise caregivers appropriately. They may recommend too often the services

they know about and fail to recommend others that

may be more appropriate for the patient’s and

family’s needs. Anecdotal evidence suggests that

some physicians lack service knowledge; others lack

both service consciousness and service knowledge;

and still others are well-informed about services that
102 ● Confused Minds, Burdened Families: Findinng Help for People With Alzheimer’s & Other Dementias

may be useful for people with dementia and about

the availability of those services in the community.

Physicians play a pivotal role in linking people

with dementia to services, and ways must be found

to ensure their effectiveness in that role. It may be

unrealistic to expect physicians to stay up-to-date on

available services and funding for services in other

than very small communities, and it probably would

be undesirable from a societal perspective for

physicians to spend their time in that way. A more

appropriate objective may be for physicians to be

aware of the kinds of services that maybe beneficial

for people with dementia, to discuss services in a

general way with patients and their caregivers, and

then to refer the patients and caregivers to another

individual or agency that can provide information

about specific service providers and funding for

services. Obviously, for this approach to work, a

source of accurate information about services and

service providers must exist in the community.

CONCLUSION

In many communities, accurate information about

services for people with dementia and about funding

for such services is not available. Other problems

usually receive more attention from policymakers

and dementia advocates, but when dementia caregivers are asked, they stress the difficulties they face

in trying to obtain information about services and

funding. In the view of many caregivers and service

providers interviewed for this OTA assessment,

caregivers’ lack of knowledge about services is the

primary barrier to service use.

Knowledge about services has two components,

referred to here as service consciousness and service

knowledge. The study conducted for OTA in Cuyahoga County, Ohio, found that a sigificant proportion of caregivers of people with dementia, 12 to 92

percent depending on the service in question, lacked

service consciousness—i. e., they had never heard of

the service. Again depending on the service, 35 to 96

percent of caregivers lacked service knowledge

Photo credit: Alzheimer’s Association and Rush-Presbyterian/St. Luke’s Medical Center

Physicians play a pivotal role in linking people with dementia to services.

Ways must be found to ensure their effectiveness in that role.
Chapter 2-The Need for Public Education and Information and Referral ● 103

i.e., having been told what the service is, they could

not identify a specific provider in the community

(186).

A caregiver’s need for service knowledge probably is greatest at the time(s) when he or she is

selecting a specific provider. A caregiver’s need for

service consciousness, however, is longer lasting

and more general. An awareness of different types of

services can help a caregiver think realistically about

a demented person’s care, consider various alternatives, and plan for the future-all of which may

increase the caregiver’s sense of being in control of

the caregiving situation.

Lack of service consciousness is probably addressed most effectively through public education

programs. Lack of service knowledge is addressed

most effectively through information and referral

programs. Neither approach is sufficient by itself

because people who lack service consciousness are

unlikely to call an information and referral source.

Conversely, the kind of information that can be

provided through public education programs often is

not detailed enough to allow people to locate the

services they need or to determine whether they are

eligible for various funding programs.

To link people with dementia to appropriate

services, an information and referral program must

have an up-to-date resource list that includes all

agencies and individuals in the community that

provide the kinds of services that maybe needed for

people with dementia. Whether the information and

referral program is dementia-specific or not, it must

be dementia-capable. The program’s staff must be

knowledgeable about dementia, the care needs of

people with dementia, and the common problems

families and others face in taking care of a person

with dementia. The program must be able to provide

accurate information about eligibility and coverage

for services through Medicare, Medicaid, and other

funding sources. If the program is not dementiaspecific, it must have mechanisms for identifying

people with dementia so that it can provide appropriate information and referrals. Lastly, it must be

responsive to the special information and referral

needs of ethnic minority people with dementia.

Even if accurate information about services and

funding for services were available, however, it

would not mean that there would be enough services

or funding. Insufficient availability of services and

funding for services is a major public policy concern

that cannot be remedied by an accurate resource list .

or by the best public education and information and

referral programs. On the other hand, without an

accurate resource list, no one can know with

certainty what is and is not available, except in small

communities with very few service providers.

In public policy discussions, a single-minded

focus on the problem of insufficient availability of

services and funding for services for people with

dementia precludes awareness of other problems

that restrict access to the services and sources of

funding that are available. Obviously, one of these

problems is the lack of accurate information about

services and funding for services. Underlying that

problem is the incredible complexity of services and

funding at the community level. An accurate resource list and public education and information and

referral programs can help caregivers and others

locate services and sources of funding but cannot

change the inherent complexity of the service

environment. If the complexity of the service

environment were reduced, obtaining accurate information about services and funding would certainly

be less difficult.
Chapter 3

The Need for Outreach

and Case Management
CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107

THE LIMITED USE OF SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108

PERSONAL FACTORS THAT MAY INTERFERE WITH INDIVIDUALS’

ABILITY OR WILLINGNESS TO USE SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . 110

Personal Factors Related to Individuals With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . 111

Personal Factors Related to Informal Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113

Implications for an Effective System To Link People With Dementia to Services . . 119

WHAT IS SPECIAL ABOUT CASE MANAGEMENT FOR

PEOPLE WITH DEMENTIA? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122

Findings From an Exploratory Study of Case Management for

People With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .123

Implications for an Effective System To Link People With Dementia to Services . . 127

UNRESOLVED QUESTIONS ABOUT CASE MANAGEMENT IN A SYSTEM

TO LINK PEOPLE WITH DEMENTIA TO SERVICES . . . . . . . . . . . . . . . . . . . . . . 129

To What Extent ShouId a Linking System Try To Maintain at Home Individuals

With Dementia Who Live Alone and Have No Informal Caregiver? . . . . . . . . . . . . 129

Should Counseling Be Part of Case Management in a Linking System? . . . . . . . . . . . 130

In General, Should Families Be Regarded as “Co-Case Managers”

or “Co-Clients” by a Linking System? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131

How Many People With Dementia Need Case Management? . . . . . . . . . . . . . . . . . . . . . 131

How Much Would Case Management Increase the Use of Services? . . . . . . . . . . . . . . 134

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135

Box

Page

3-A. Findings From the Duke University Respite Care Demonstration Project

Regarding Family Caregivers’ Reluctance To Use Services . . . . . . . . . . . . . . . . . . . . 118

Tables

Page

3-1. The Five Core Functions of Case Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108

3-2. Caregivers’ Opinions About People’s Characteristics, Feelings, and Perceptions

That Are Barriers to the Use of Services, Cuyahoga County, Ohio, 1988 . . . . . . . 111

3-3. Ranking of Certain Goals of Case Management by Case Managers

in Oregon and Washington State . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122
Chapter 3

The Need for Outreach and Case Management

INTRODUCTION

People with dementia and their caregivers cannot

be linked to services or sources of funding for

services that do not exist, and as noted throughout

this report, existing services and finding for services

for people with dementia are inadequate (9,831 ).1

Even when services and funding are available,

however, some patients and caregivers do not use

them. As discussed in chapter 2, one important

reason why they do not use services is that they do

not know about the services. To increase people’s

knowledge about services and sources of funding for

services, an effective linking system must include

public education and information and referral (see

ch. 2).

The analysis in this chapter indicates that some

people with dementia and some caregivers need

assistance that goes beyond public education and

information and referral if they are to be linked to

appropriate services. The types of individuals who

are likely to need such additional assistance include:

●

●

●

individuals with dementia who live alone and

have no family member or other informal

(unpaid) caregiver to help them;

individuals with dementia who have an involved family member or other informal caregiver who is aware of services but reluctant to

use them even though the services are needed;

and

individuals with dementia who have an involved family member or other informal caregiver who is aware of services but unable to

arrange them.

From the analysis in this chapter, OTA concludes

that in order to serve these types of individuals

effectively, a linking system must include outreach

and case management in addition to public education and information and referral. Outreach in this

context is defined by OTA as any active method of

identifying individuals who need services but are

unlikely to respond to a public education program or

to contact an information and referral source on their

own. Case management in this context is defined as

a process that includes the five core functions shown

in table 3-1.

The first section of this chapter presents the

available data on the use of services by people with

dementia and their caregivers. The data show that

many of these individuals do not use services. Some

of them do not use services because the services do

not exist or are too costly or because they are not

aware of the services. Data from several studies

indicate, however, that some people with dementia

and their caregivers do not use services even when

the services are available and affordable and they

know about the services. As discussed in the second

section of the chapter, some people with dementia

and some caregivers have characteristics, feelings,

and perceptions that make them either unable to

arrange services themselves or reluctant to ask for or

accept services. To a great extent, these patient and

caregiver characteristics, feelings, and perceptions

explain why outreach and case management are

essential components of an effective linking system.

Many of the same characteristics, feelings, and

perceptions that interfere with the use of services by

some people with dementia and by some caregivers

also complicate the case management process with

these individuals, making it difficult for a case

manager to assess their needs and plan, arrange, and

monitor services for them. The third section of the

chapter discusses what is special about case management for people with dementia and draws implications for the skills and training needs of case

managers who work with people with dementia and

their caregivers.

Many questions about the case management

component of a linking system for people with

dementia remain to be answered, including whether,

in general, families should be regarded by a linking

system as ‘‘co-case managers” or “co-clients;”

whether counseling should be part of the case

management component of a linking system; and

how many people with dementia and their caregivers

need or should receive case management. These and

other unresolved questions pertaining to case management for people with dementia are discussed at

the end of this chapter. The answers to these

questions have implications for the design and

operation of the case management component of a

Isee tible 1-2 in ch. 1 for a list of the services that may be needed for pmple ~th demmtia.

–lo7–
108 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Table 3-l-The Five Core Functions of

Case Management

1. Assessing a client’s needs

2. Developing a plan of care

3. Arranging and coordinating services

4. Monitoring and evaluating the services that are delivered

5. Reassessing the client’s situation as the need arises

SOURCE: Office of Technology Assessment, 1990.

linking system and for the skills and training needs

of case managers employed by the system.

This chapter relies heavily on the findings of two

OTA contract reports. One OTA contract report

describes a respite care demonstration project for

families of people with dementia conducted by Duke

University and identifies factors that interfered with

the timely use of respite services by some families

(291). The second OTA contract report describes an

exploratory study conducted for OTA in 1988 that

examined: 1) what case managers in five Pennsylvania area agencies on aging (AAAs) perceived

to be the unique aspects and difficulties of working

with people with dementia and their families; and 2)

how family caregivers perceived the process by

which the AAA case managers arranged services for

them (934). The Duke respite care demonstration

project and the study conducted for OTA in Pennsylvania are described later in this chapter as their

findings are presented.2

THE LIMITED USE OF SERVICES

Available data from 11 small-scale studies described below indicate that although the majority of

people with dementia use physicians’ services, only

a minority of them use in-home and other community services. Several large-scale national studies,

such as the 1982 and 1984 National Long-Term Care

Surveys, also include information about subjects’

use of services, but it is difficult to determine with

any certainty which subjects in the surveys have

dementia (468). Thus, it is not possible to develop

valid figures on service use by people with dementia

from those studies. For that reason, OTA’s conclusions about service use are based on the 11

small-scale studies that focus exclusively on service

use by people with dementia.

The source of the study sample, the severity of the

subjects’ dementia, and the time period and specific

services covered by the 11 studies vary; hence, their

findings are not directly comparable. Moreover, the

use of some services-mental health services, legal

services, benefits counseling, and certain other

services needed by some people with dementiawas not considered in any of these studies. Nevertheless, the findings suggest that many noninstitutionalized people with dementia do not use any paid

in-home or community services other than physicians’ services.

1.

2.

3.

A 1985 survey of 597 caregivers of noninstitutionalized individuals with dementia in 16 States

found that only one-fourth of the caregivers had

ever used any paid in-home or community

services (117).

A 1987 survey of 100 caregivers of noninstitutionalized individuals with dementia in Connecticut found that 14 percent of these individuals were receiving services from community

agencies, an additional 12 percent were receiving services from “privately hired help,” and 3

percent were receiving services from both sources.

The results of a companion survey of 531

Connecticut health care and social service agencies suggest that only 13 percent of all noninstitutionalized individuals with moderate or severe

dementia in the State were receiving any services

from such agencies in 1987 (479).

A 1983 study of 501 family caregivers of individuals with dementia in North Carolina found

that 43 percent of the caregivers had used a paid

helper (usually a maid or sitter) to care for the

patient (242,243,291). Fewer than one-fifth of

the caregivers had used any other in-home or

community services for the individual with

dementia: of these, 19 percent had used in-home

nursing services, 12 percent had used adult day

care, and 13 percent had used homemaker or

chore services. Followup interviews with the

same caregivers a year later found that only

one-fourth of the caregivers had used any paid

services other than physicians’ visits for the

person with dementia in the intervening year.

The average duration of the demented individuals’ illness in this study was 5 years (range: 6

months to 30 years), and most services were used

in the final year before the patient died or was

placed in a nursing home.

me two conlract reports are available from the National Technical Information Service in Springfield, VA (see app. A.)
Chapter 3--The Need for Outreach and Case Management ● 109

4. A study of 101 people with dementia seen at an

outpatient dementia clinic in Minnesota between

1982 and 1984 found that 48 of them had severe

dementia at the time of their initial clinic visit; by

the time of the last followup (2 to 4 years after

their initial visit), 31 percent of these 48 patients

had died; 40 percent had been put in a nursing

home; and 29 percent were still living at home

5.

6.

7,

(411). Of those who were still at home, 79

percent, or 23 percent of the original sample,

were using either adult day care or in-home

nursing services. The same study found that 53

of the 101 people seen at the outpatient dementia

clinic between 1982 and 1984 had mild dementia

at the time of their initial visit; by the time of

their last followup (2 to 4 years after their initial

visit), about half of these 53 patients had died (9

percent) or been put in a nursing home (41

percent), and half were still living at home. Of

those still at home, 32 percent, or 13 percent of

the original sample, were using either adult day

care or in-home nursing services.

A 1986 survey conducted for OTA of 569 family

caregivers of people with dementia found that 11

percent of the caregivers were using paid companion or home health aide services at the time

of the survey, and 21 percent had used them in

the past but were not using them at the time of the

survey (926). Eight percent of the caregivers

were using visiting nurse services at the time of

the survey, and 17 percent had used them in the

past. Four percent were using adult day care

services, and 6 percent had used them in the past.

Three percent were using respite care services,

and 5 percent had used them in the past.

A study of 117 individuals with dementia who

were assessed from March to July 1987 by the

Alzheimer’s Project of Kennebec Valley, Maine,

found that 11 percent of these individuals were

using respite/adult day care, 11 percent were

using homemaker services; 4 percent were using

“hired help”; 4 percent were using a personal

care attendant; and 3 percent were using a nurse

assistant (223).

An analysis of data on 453 individuals with

dementia seen at California’s six Alzheimer’s

Disease Diagnostic and Treatment Centers in

1987 found that two-thirds of these patients had

used physicians’ services in the previous 6

months (227). Only 10 percent or fewer of the

8

patients had used home health aide, homemaker/

chore, or adult day services in that period.

A study of 213 family caregivers of individuals

with dementia in Michigan found that while 63

percent of the patients had used physicians’

services in the previous 3 months, fewer than

one-third had used home health aide services (30

percent), visiting nurse services (18 percent),

adult day services (14 percent), housekeeping

services (8 percent), or respite care services (7

percent) (774). Moreover, many of the caregivers

who had used a service had used it very few

times. The researchers compared service use by

people with dementia from this study and service

use by people with stroke and other diagnoses

(e.g., cardiovascular and renal diseases) from

other studies and found that although the people

with stroke and other diagnoses were only

slightly more impaired than the people with

dementia in terms of activities of daily living

(ADLs) and instrumental activities of daily

living (IADLs), the people with stroke and other

diagnoses used in-home and community services

two to three times more frequently (255).

9. A 1983-84 study that compared the amount of

care received by 20 elderly people who had

moderate to severe dementia and 20 elderly

people who had moderate to severe physical

impairments found that, on average, the people

with dementia received less than half the amount

of paid services received by the people with

physical impairments (7.5 hours per week v. 16

hours per week of paid services, respectively)

(71).

10. In a 3-year respite care demonstration project

conducted by Duke University in North Carolina, families of people with dementia were

offered two types of respite care: in-home respite

or overnight care of the patient in a nursing home

(291). Although the respite care was provided

regardless of a family’s ability to pay, only a

small percentage of the families eligible for the

respite services used them. Furthermore, many

of the families in this study waited until just prior

to the patient’s death or placement in a nursing

home to use respite services: about half of the

people with dementia who received respite

services died or were placed in a nursing home

within 8 months of frost receiving the services,

and half of those individuals died or were placed
110 • Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

11.

in a nursing home within 30 days of first

receiving the services.3

In a l-year respite care demonstration project

conducted by the Philadelphia Geriatric Center,

over 300 families of people with dementia were

offered three types of respite care: 1) in-home

respite care, 2) adult day care, and 3) overnight

nursing home care. About half of these families

used the respite services offered-35 percent

used in-home respite care, 2 percent used adult

day care, 7 percent used overnight nursing home

care, and 8 percent used more than one type of

respite care. Most of the families who used

respite services used very few hours: during the

year, only about one-third of the families who

used in-home respite care used more than 100

hours of this type of care; families who used

adult day care used an average of only 10 days of

such care, and families who used overnight

nursing home care used an average of only 11

nights of such care (88,448).

As noted earlier, these 11 studies are not directly

comparable because of differences in the time period

and services covered, the source of the study sample,

and the severity of the subjects’ dementia. Nevertheless, the following general conclusions can be drawn

from the studies’ findings:

only about one-fourth to one-half of all noninstitutionalized people with dementia use any

paid in-home or community services other than

physicians’ services;

among those noninstitutionalized people with

dementia who do use services, many use very

few services or use them infrequently;

many noninstitutionalized people with dementia who do use services use them very late in the

course of their disease; and

on average, noninstitutionalized people with

dementia use fewer paid services than noninstitutionalized people with physical impairments.

The percentage of people with dementia who use

nursing homes in the course of their dementing

illness is not known. The 1986 survey of 569 family

caregivers conducted for OTA (study #5 above)

found that half of the individuals with dementia

being cared for had been in a nursing home at some

time in the course of their illness, including 36

percent who were in a nursing home at the time of the

survey and 15 percent who had been in a nursing

home- previously but were not at the time of the

survey (926). The five other studies cited above that

included nursing home residents found that as few as

3 percent to as many as 33 percent of the individuals

in their samples were in nursing homes (223,227,

242,479,774). 4 The wide range in these figures

reflects differences in the source of the sample and

the time frame of the studies and differences in

Medicaid regulations, bed supply, and other factors

that affect the number of people with dementia in

nursing homes in different States.

The 1985 National Nursing Home Survey found

that 620,000 nursing home residents--47 percent of

all elderly nursing home residents—had senile

dementia or chronic organic brain syndrome (846).

That survey also found that 830,000 nursing home

residents-63 percent of all elderly nursing home

residents—were so disoriented or memory-impaired

that their performance of the activities of daily

living, mobility, and other tasks was impaired nearly

every day. Using these figures from the National

Nursing Home Survey and OTA’s estimates of the

prevalence of dementia nationwide,5 one could

estimate that from 9 to 33 percent of Americans with

dementia are in nursing homes at any one time. The

wide range in that estimate reflects uncertainty about

the percentage of nursing home residents with

dementia (e.g., 47 to 63 percent) and uncertainty

about the prevalence of dementia.

PERSONAL FACTORS THAT MAY

INTERFERE WITH INDIVIDUALS’

ABILITY OR WILLINGNESS

TO USE SERVICES

There are many reasons why some people with

dementia and some caregivers do not use services.

As discussed in chapter 2, researchers performing a

study for OTA in Cuyahoga County, Ohio, asked 26

caregivers of people with dementia to give their

opinions about why people do not use services

(186). 6 The reasons most frequently identified by

Ssx box 3.A for fier discussion of the Duke University Respite Care Demonstration PmJect.

d~e SpWi.tIc estimates by study were 3 percent (223,227,774); 28 percent (242); and 33 p~cent (479).

S~ 1987, Om e~~t~ tit 1.5 ~lion Ameficm ~~vere dem~~, and 1 to 5 million ~d mild or mod~ate demen~ (831)0

GFor more information on the study conducted for OTA in Cuyahoga County, OH, see app. A.
Chapter 3—The Need for Outreach and Case Management ● 111

these caregivers were people’s lack of knowledge

about services and people’s inability to afford

services. In addition, many of the caregivers said that

certain characteristics, feelings, and perceptions are

barriers to service use for people in general and were

reasons they did not use services themselves. The

reasons these caregivers identified are listed in table

3-2.

Researchers in the study conducted for OTA in

Cuyahoga County, Ohio, also asked 24 representatives of community agencies that provide services

for people with dementia to identify barriers that

kept people with dementia and their caregivers from

using services (186). As noted in chapter 2, all 24

agency representatives said that their clients’ lack of

knowledge about available services was often or

occasionally a barrier to the use of services, and most

(87 percent) of them said that their clients’ lack of

financial resources to pay for services was often or

occasionally a barrier. In addition, many of the

agency representatives said that the following personal characteristics, feelings, and perceptions were

often or occasionally barriers to service use:

●

●

●

clients’ desire to remain independent of the

formal care system (identified by 91 percent of

the agency representatives);

clients’ lack of recognition that they need

formal services (identified by 96 percent of the

agency representatives);

clients’ inability to arrange services once they

know the services are available (identified by

88 percent of the agency representatives);

clients’ feeling that the recommended service

was not needed (identified by 84 percent of the

agency representatives);

clients’ feeling uncomfortable about using

recommended services (identified by 76 percent of the agency representatives);

clients’ unwillingness to pay for services even

though they are judged to have adequate

financial resources (identified by 58 percent of

the agency representatives); and

clients’ feeling that others will disapprove of

their use of services (identified by 41 percent of

the agency representatives) (186).

In the analysis that follows, OTA identities the

personal factors-i.e., characteristics, feelings, and

perceptions—that may interfere with the ability or

willingness of some individuals with dementia or

their caregivers to use available services. A later

section of the chapter discusses the implications of

these patient and caregiver characteristics, feelings,

and perceptions for an effective linking system.

Personal Factors Related to Individuals

With Dementia

Most studies and commentaries about people’s

characteristics, feelings, and perceptions that may

limit their use of services pertain to family caregivers. Relatively little has been written about

characteristics, feelings, and perceptions of individuals with dementia that may limit their use of

services. At least 20 percent of people with dementia

live alone, however, and up to half of these

individuals have no family member or other informal caregiver to help them (see ch. 1). Such

Table 3-2--Caregivers’ Opinions About People’s Characteristics, Feelings, and Perceptions That Are Barriers —

to the Use of Services, Cuyahoga County, Ohio,1988 (N = 26)

How often is it true for people in Is there a reason you did not use

general? the services?

usually Yes

Possible barriers to the use of services (in percent) (in percent)

People know what services are available but don’t know how to

make arrangements to use them . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 50

People don’t think they need the services recommended to them . . . . . . . 38 50

People don’t use the services because they do not want to lose

their independence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38 19

People don’t recognize the fact that they need services. . . . . . . . . . . . . . . 33 42

Using services makes people feel uncomfortable . . . . . . . . . . . . . . . . . . . . 27 31

People are afraid others will not approve if they use services. . . . . . . . . . 19 19

People have money but are not willing to pay for services. . . . . . . . . . . . . 12 8

SOURCE: S. Eckert and K. Smyth, “Methods of Locating and Arranging Health and Long-Term Care Services for Persons With Dementia,” contract report

prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, 1988.
112 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

individuals make decisions about services for themselves-either explicitly or implicitly-unless a

case manager, service provider, or other health care

or social service professional makes the decisions

for them,

OTA’s analysis of characteristics, feelings, and

perceptions of individuals with dementia that may

interfere with their ability or willingness to use

available services is based primarily on two sources:

. case managers’ responses to an exploratory

study conducted for OTA in five Pennsylvania

AAAs (934); and

. OTA’s informal discussions with case managers, health care and social service professionals,

and others, including members of the advisory

panel for this study.

All of the case managers and other professionals just

mentioned emphasized that many of their clients

with dementia live alone and have no one to help

them with decisions about services. They noted that

clients who live alone with no one to help them are

generally more isolated and more resistant to using

services than people with dementia who have an

informal caregiver to assist them.

Individuals with dementia vary greatly with

respect to their cognitive and self-care abilities,

emotional and behavioral characteristics, and other

characteristics (e.g., age, ethnicity, socioeconomic

status, and coexisting physical conditions) that are

largely unrelated to their dementia. As an individual’s dementing illness progresses, some of these

characteristics change in ways that affect the individual’s attitudes about services. It is important to

point out, therefore, that although some people with

dementia have the characteristics, feelings, and

perceptions discussed below, not all people with

dementia have them. Furthermore, people with

dementia who have them at one time do not

necessarily have them at another.

1. Some people with dementia do not know that

they need services.

Because of lack of judgment, other cognitive

deficits associated with dementia, or denial, some

people with dementia are not aware of their own

limitations. Consequently, they may not know they

need services (487,934).

2. People with dementia are unlikely to know

about potentiallv helpfful services. . “ m

Because of loss of memory and diminished ability

to learn new information, many people with dementia cannot remember or learn about potentially

beneficial services (934). People with dementia who

live alone and have no informal caregiver are both

physically and emotionally isolated. Even if they are

cognitively able to learn about services, such individuals may not receive the necessary information.

3. Many people with dementia are not able to

arrange services for themselves.

Because of cognitive deficits associated with

dementia, people with dementia are unlikely to be

able to remember or find the names and telephone

numbers of service providers. They may not understand or remember what they are told about eligibility requirements, cost, reimbursement, and other

factors. They may not be able to give service

providers information the providers need to initiate

services. Some people with dementia cannot communicate clearly with providers. Some forget what

they are trying to do before the service arrangements

are complete.

4. Some people with dementia do not want

anyone to know about their cognitive and

other deficits and may isolate themselves

and refuse services for that reason.

At least in the early stages of dementing diseases,

some people with dementia are ashamed of their

memory loss and other impairments associated with

dementia and try to conceal those impairments from

other people to avoid embarrassment (535). Some

people try to conceal their cognitive and other

impairments because they are afraid that if the

impairments are recognized, other people will try to

take control of their lives (456). Anecdotal evidence

indicates that some people with dementia isolate

themselves completely, because they are afraid that

if anyone finds out how poorly they are managing,

they will be placed in a nursing home.

5. Some people with dementia are afraid of

being exploited by service providers and

may not use services for that reason.

Because of their memory impairment and lack of

judgment, people with dementia are easily exploited

by anyone who interacts with them (40,286). Many

people with dementia have been, or fear they will be,

exploited by service providers, especially nonprofessional in-home workers (934). For that reason,

they may be reluctant to use services.
Chapter 3-The Need for Outreach and Case Management .113

Photo credit: Bill Adams

Some people with dementia who live alone and have no

relative or friend to help them refuse services because they

are afraid of being exploited by service providers or

afraid that if anyone finds out how poorly they are

managing, they will be placed in a nursing home.

In addition, research indicates that one-fourth to

one-half of people with Alzheimer’s disease are

paranoid. Beliefs that other people are stealing their

possessions or planning to harm them are common

(295,429,525,728,787). Realistic fears about exploitation may exacerbate an individual’s paranoia, thus

increasing his or her reluctance to use services.

6. Some people with dementia have realistic or

unrealistic concerns about money that make

them reluctant to use services.

People with dementia who live alone and have no

relative or friend to help them may have both

realistic and unrealistic concerns about money that

make them reluctant to use services. On average,

elderly people who live alone have less income than

elderly people who live with someone else (687,838).

Realistically, therefore, these individuals may not be

able to afford services.

Some people with dementia whose memory for

events in the distant past is better than their memory

for events in the present may compare current prices

with prices they remember from long ago and refuse

to pay even very reasonable amounts for services

because they think they are being overcharged. If no

one else is legally empowered to spend the individual’s money (e.g., through guardianship, conservatorship, or a durable power of attorney), a person

with dementia can effectively refuse services by

refusing

Many

teristics,

to pay for them (181).

Personal Factors Related to

Informal Caregivers

studies and commentaries identify characfeelings, and perceptions of family members and other informal caregivers that may interfere

with the caregivers’ ability or willingness to use

available services. The analysis that follows draws

on those studies and commentaries.

Not all informal caregivers of people with dementia have the characteristics, feelings, or perceptions

that are discussed in this section. Nor are caregivers’

feelings and perceptions necessarily consistent,

clearly defined, or differentiated. Moreover, caregivers’ feelings and perceptions change over time. If

and when caregivers have the following characteristics, feelings, or perceptions, however, they are

likely to be reluctant to use services.

1. Some caregivers do not regard the individual with dementia as being sick or having

a disease and therefore do not perceive a

need for services.

Some caregivers do not acknowledge a patient’s

confusion and unusual behavior (if any). Some

ascribe the person’s symptoms to normal aging.

Others believe the symptoms are under the person’s

control-saying, for example, ‘If she paid attention,

she wouldn’t be so forgetful,” or “He just does that

to annoy me” (88). The fluctuating nature of

cognitive and other deficits associated with dementing diseases and the lack of overt physical signs

of many of the diseases make it easy for caregivers

not to acknowledge that an individual has a dementing disease, especially in the early stages of the

disease (286,643,936).

If a caregiver does not acknowledge that the

person with dementia is sick or has a disease, the

caregiver is unlikely to perceive a need for services.

Ironically, some caregivers seem to resist using

services because doing so would require them to

admit to themselves that their relative has a dementing disease and may not recover (936).

2. Some caregivers believe that the family is

morally obligated to provide all needed

services for a person with dementia and that

it is wrong to turn to agencies or outsiders

for help.
114 . Confined Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Probably most people believe that families are to

some degree morally obligated to take care of their

members. Family caregivers of people with dementia frequently express this sense of obligation. Some

feel that they must take care of their spouse, parent,

or other relative with dementia to repay that person

for taking care of them in the past. Spouse caregivers

sometimes regard caregiving as a fulfillment of their

marriage vows or other solemn pacts they made with

their spouse. Adult children may have promised

their parents to take care of them in old age

(291,514,669). Whatever the source of their sense of

obligation, violating it can cause intense and prolonged feelings of guilt (514,670,933). These feelings probably arise most often when family members place the patient in a nursing home, but some

caregivers also feel guilty about leaving the patient

at home with a home health aide or homemaker or at

an adult day center (514). The fact that in caring for

a person with dementia, there are few required skills

that family caregivers do not have (or believe they

have) makes some caregivers feel even more guilty 

about using services that they could—at least in

theory-provide themselves.

Because of different societal expectations about

the appropriate roles of men and women, women are

more likely than men to feel obligated to provide all

the patient’s care themselves (85,669,936). Likewise, certain ethnic and social groups are more likely

than others to believe that families-and sometimes

specific family members-are obligated to provide

all the patient’s care themselves and that it is wrong

to use paid services (330).

One might expect that family caregivers who have

had a difficult relationship with the patient in the

past or who feel angry or frustrated about aspects of

the caregiving situation would feel less obligated to

provide all the patient’s care themselves, but research and anecdotal evidence indicate that the

opposite is often true. Some of these caregivers feel

guilty about their negative emotions and consequently redouble their efforts to provide all the

person’s care themselves (88,96,137,272,535,936).

3. Some caregivers do not feel burdened by

caregiving tasks that seem extremely burdensome to other people. Caregivers who do

not feel burdened are unlikely to perceive a

need for services.

Caregiver burden has been defined and studied in

terms of: 1) patient characteristics and behaviors that

create demands on the caregiver; 2) the caregiver’s

subjective experience of those demands; and 3) the

objective impact of caregiving on the physical and

mental health, social participation, and financial

status of the caregiver (932). Research has found a

surprising lack of correlation between patient characteristics and behaviors that create demands on the

caregivers and the caregiver’s subjective experience

of those demands (244,643,668,938). Some caregivers’ subjective experience of burden is lower than

might be expected given the objectively difficult

caregiving situations they face (241,937). Moreover,

many families have positive feelings about caregiving and pride in their ability to manage difficult

caregiving situations (125,242,448,514,555,643).

To note the positive feelings of some caregivers

and the lack of correlation between patient characteristics and behaviors and caregivers’ subjective

feelings of burden is not to suggest that caregivers of

people with dementia are not burdened. In fact,

research indicates that caregivers of people with

dementia experience more subjective feelings of

burden and more negative consequences of caregiving (e.g., increased use of alcohol and psychotropic

drugs and reduced participation in social activities)

than caregivers of other elderly people or other

comparison groups (71,242291,296,41 1,415,610,612).

The intent here is simply to emphasize the diversity

of caregivers’ subjective experience of the demands

of caregiving.

Many factors mediate between patient characteristics and behaviors that create demands on a

caregiver and the caregiver’s subjective experience

of burden and explain some of the lack of correlation

between them. These factors include the age and sex

of the caregiver; the caregiver’s relationship with the

patient; whether the caregiver is employed; and

whether the caregiver lives with the patient. Duke

University’s studies indicate, for example, that male

(primarily spouse) caregivers of people with dementia experience less subjective burden than female

caregivers (291). Although older spouse caregivers

are generally more objectively burdened, younger

adult child caregivers experience more subjective

burden (291). Employed caregivers generally experience less subjective burden than unemployed

caregivers (86,198,242), but caregivers who quit

work or reduce their hours because of caregiving
Chapter 3--The Need for Outreach and Case Management ● 115

responsibilities experience more subjective burden

than other caregivers (86).

Caregivers’ appraisals of patient characteristics

and behaviors affect whether they experience the

characteristics and behaviors as burdensome (297,

487,533,649,938). Anecdotal evidence suggests, for

example, that caregivers who view a patient’s

confusion and unusual behaviors as a direct consequence of a disease are generally less bothered by

them than caregivers who view the same problems

as in the patient’s control. Caregivers’ use of certain

coping mechanisms, such as seeking information,

problem solving and emphasizing positive feelings

is associated with less subjective experience of

burden (295,487,610,649,938). Lastly, the amount

of social support provided by relatives, friends, and

voluntary associations seems to be associated with

the caregiver’s subjective experience of burden

(242,297,487,610,749,936,937), although some studies suggest that it is the caregivers’ perception of

social support, rather than the actual amount of

support received, that correlates with their subjective experience of burden (291).

Three general hypotheses have been proposed

about how family caregivers’ subjective experience

of burden changes over time (293). The ‘wear-andtear hypothesis’ suggests that the longer the period

of caregiving, the greater the caregiver’s subjective

experience of burden. The “adaptation hypothesis”

suggests that caregiving initially involves new

demands for which the caregiver is unprepared, but

that as time passes, the caregiver develops ways of

meeting the demands and is less burdened. The

‘‘trait hypothesis’ suggests that caregivers’ experience of burden remains the same despite changes in

the patient’s condition and the passage of time.

Caregivers’ subjective experience of burden has

been shown to predict service use (291). Caregivers

who do not feel burdened are unlikely to perceive a

need for services even if their caregiving situations

seem burdensome to others.

4. Caregivers who have devoted themselves to

the care of the patient, often for years,

sometimes find it difficult to “give up” and

use paid services.

Caring for a person with dementia is an objectively difficult task that takes caregivers away from

other interests, activities, and relationships. To

function in this role for a prolonged period, caregivers may have to commit themselves to it singlemindedly, not allowing themselves to question what

they are doing or to focus on the negative aspects of

caregiving. In this state of mind, they may regard the

use of services as “giving up” and resist it for that

reason.

The feeling that using paid services constitutes

“giving up” often occurs in the context of nursing

home placement (96). One 76-year-old woman who

placed her husband, who had AIzheimer’s disease, in

a nursing home described that feeling as ‘the trauma

of finally having to accept the fact that you cannot

care for him any longer’ (670). Some family

caregivers also regard the use of in-home and

community-based services as ‘‘giving up,’ sometimes because they regard the use of these services

as the first step toward nursing home placement

(88,186).

5. Some caregivers are reluctant to use services

because they fear the disapproval of relatives or friends.

Family caregivers who have come to accept the

need for services still may not use services because

they fear criticism from others. This often occurs

when one family member, particularly the spouse or

an adult child, has provided all the patient’s care.

Other relatives and friends who have been uninvolved may not be aware of changes in the patient’s

cognitive ability and behavior or of the difficulty of

caring for the person. The primary caregiver may not

have told them about the problem, or they may not

have been willing or able to acknowledge it. In either

case, they do not understand the need for services

and may criticize the primary caregiver for shirking

his or her obligation to the patient by using paid

services. Such criticism, or even the anticipation of

it, compounds the caregiver’s guilt feelings and

discourages him or her from using services (514,936).

6. Some caregivers are too overwhelmed with

various feelings to think clearly about how

services might benefit them or the patient.

Alzheimer’s disease and other diseases that cause

dementia create devastating losses for the patient

and patient family. Every account of these diseases

by the spouses and adult children of patients conveys

the sadness and trauma for the family of witnessing

the deterioration of their relative with dementia and

losing meaningful aspects of their relationship with

the person. In addition, problems associated with
116 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

caregiving often cause feelings of frustration and

anger. Changing roles and responsibilities within a

family due to the incapacity of one family member

cause feelings of anxiety and resentment. Some

caregivers feel ashamed of their negative emotions,

guilty for not doing more for the patient, and

depressed about their own lives and the caregiving

situation. Some are so overwhelmed by these

feelings that they cannot think clearly about how to

solve their problems (39,88,129,137,201,535,

610,916,936).

Many caregivers become physically and emotionally isolated from other people because of their

caregiving responsibilities. Because of that isolation, they may assume that they are the only ones

who have negative feelings. Family counseling and

family support groups often help caregivers understand that other caregivers have similar feelings

(88,137,256,272,933,936). For some caregivers, that

understanding is the first step in coming to terms

with their own feelings so that they can begin to

think clearly about their caregiving problems and

consider possible solutions, including the use of

services.

7. Some caregivers do not use services because

they are unable to arrange the services.

Eighty-eight percent of the agency representatives

and 73 percent of informal caregivers interviewed in

Cuyahoga County, Ohio, said that people’s lack of

knowledge about how to arrange services is a barrier

to their use of services for people with dementia.

One half of the caregivers said that not knowing how

to arrange services was a reason why they did not use

services (186).

The complexity and fragmentation of services in

many communities makes it difficult for anyone to

arrange services (see ch. 2). If a person with

dementia has physical or other problems in addition

to dementia and so requires services from several

different providers, the task of arranging and coordinating the needed services can be extremely difficult. Because of the constant demands of caring for

a Person with dementia, some caregivers have

neither the time nor the energy to arrange services.

Language and cultural differences limit some caregivers’ ability to arrange services. In families in

which the person with dementia was the ‘‘organizer’ or “arranger” prior to his or her illness, the

family member who has become the caregiver may

have no experience in these roles.

Some people with dementia have a primary

caregiver, who provides most of their care, and other

relatives and friends who provide occasional assistance. These “secondary caregivers” sometimes

help to arrange services. In 1986, 57 percent of

family members who were first-time callers to a

California agency that provides information about

services for brain-impaired adults were not the

primary caregivers (199). Likewise, a study of 25

families of persons with Alzheimer’s disease who

had a secondary caregiver found that the secondary

caregiver sometimes helped by arranging appointments and handling legal and financial matters, in

addition to providing respite for the primary caregiver (749). Anecdotal evidence suggests that because secondary caregivers often help to arrange

services, people with dementia who have a secondary caregiver are more likely than other people with

dementia to receive formal services (483).

8. Some caregivers do not use services because

they do not believe the services will help.

Family members and other informal caregivers

usually focus on the needs of the patient. Some

caregivers fear, often with good reason, that the

patient will be upset by any new service provider or

new service setting, or that the patient will feel

abandoned. Moreover, caregivers often are skeptical

about service providers’ capability to care for their

relative with dementia and fearful that the patient

may be abused or neglected. As a result, some

caregivers conclude that services will not benefit the

patient (88,117,291,670,936).

Caregivers who consider their own needs still

may conclude that services will not help because the

patient may be more agitated and difficult for them

to take care of afterwards than he or she otherwise

would have been. For some caregivers, services such

as adult day care that require the caregiver to dress

the patient and take him or her to another setting are

more trouble than they are worth. Lastly, some

caregivers anticipate, sometimes correctly, that they

will not be able to enjoy the time away from their

caregiving responsibilities because of guilt about

leaving the patient with strangers and worry about

the quality of care he or she is receiving. Caregivers

who have a bad experience with one service or

service provider for any of these reasons often are

reluctant to try again (88,186,291,533,936).
Chapter 3--The Need for Outreach and Case Management ● 117

9. Some caregivers do not use services because

they are embarrassed about the patient’s

behavior.

Because of the stigma associated with mental

illness in our society, families of people with

dementia often are embarrassed by patient behaviors, such as hallucinations, delusions, and agitation,

that suggest the patient is mentally ill. Families of

people with dementia who are verbally or physically

aggressive also may be embarrassed by these

behaviors (72,291,533,936). Some caregivers try to

conceal the behaviors from other people in order to

protect themselves and the person with dementia

from potential embarrassment. They may choose not

to use services for this reason.

10. Some caregivers do not use services because they do not want service providers in

their home.

Some caregivers are reluctant to use in-home

services because of the loss of privacy and control

that using such services may entail (450). One

caregiver may not want a “bossy” homemaker or

home health aide in his or her home. Another

caregiver may not want to ‘share the kitchen” with

an in-home service provider. Still another caregiver

may be afraid that the service provider will notice

that the caregiver has a substance abuse problem or

some other problem that the caregiver would prefer

to conceal.

11. Some caregivers feel uncomfortable about

making decisions for the patient, including

decisions about the use of services.

Informal caregivers may be reluctant to assume

authority for decisions for the patient (39,669). One

study that compared the caregiving styles of husbands and wives of people with dementia (533)

found that husbands generally were more comfortable than the wives about assuming control of

decisions for their cognitively impaired spouse. The

wives worried about their husbands’ reactions to the

decisions they made and to their assumption of

decisionmaking authority. Anecdotal evidence suggests that some adult children of people with

dementia also are troubled by taking over decisionmaking authority for their cognitively impaired

parent.

Because of one or more of the characteristics,

feelings, or perceptions discussed in this section,

some caregivers never use paid services for their

relative with dementia. Other caregivers eventually

use services, but not until long after the time when

an objective observer would have said they needed

help.

The results of the Duke University Respite Care

Demonstration Project, mentioned earlier in this

chapter and described in box 3-A, emphasize the

extent of some family caregivers’ reluctance to use

services and the tendency of some family caregivers

to put off using services for as long as they can, even

when the services are available, affordable, and

specifically designed to respond to the caregivers’

needs and preferences (291). Some of the features of

the Duke Respite Care Demonstration Project that

were at least partially successful overcoming

caregivers’ reluctance to use services are described

in box 3-A.

The objectives of respite services are to prevent or

reduce caregiver burden, to increase the effectiveness and quality of caregiving, and to prolong

caregivers’ ability to provide home care for their

impaired relatives. These goals cannot be met if

caregivers delay using services until just before the

person with dementia dies or is put into a nursing

home. Thus, a major conclusion of the Duke Respite

Care Demonstration Project, in the opinion of its

directors, was that ways must be found to encourage

caregivers to use services on a timely basis (291).

One of the stated reasons why caregivers who

were eligible for respite services in the Duke project

did not use them or waited so long to use them was

the cost of the services. Interestingly, however, their

primary concern was not about current costs but

about future costs (291). Caregivers participating in

the project were charged for the respite services on

the basis of self-perceived ability to pay—i.e., they

were told the hourly cost for the services, asked what

portion of the hourly rate they could pay, and

charged that amount. Subsidies were available for up

to $40 a week for 20 families per site. Overall, the

caregivers paid only 20 percent of the cost of the

services, and many families received totally subsidized care. Some caregivers wanted more respite

services than they received but felt they could not

afford the cost of services above the $40 per week

cap on subsidies. These caregivers had no idea how

long care would be needed for their relative with

dementia, and many of the older spouse caregivers

knew that they would have to spend most of their

assets before Medicaid would pay for nursing home
118 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 3-A—Findings From the Duke University Respite Care Demonstration Project

Regarding Family Caregivers’ Reluctance To Use Services

From 1985 through 1987, Duke University conducted a respite care demonstration project in four counties in

North Carolina. In earlier Duke studies, family caregivers of people with dementia had said they needed respite

services to provide temporary relief from the constant care and supervision of their relative with dementia. The

caregivers had said they wanted in-home respite services provided by individuals who were knowledgeable about

the care of people with dementia. They wanted services that would be inexpensive or subsidized and that would be

available at night and on weekends, as well as on weekdays.

The Duke Respite Care Demonstration Project was designed to respond to these caregiver preferences. Respite

care was provided by nursing assistants who volunteered for the project and were trained by Duke University staff

to care for people with dementia. The respite services were available weekdays, nights, and weekends, To be eligible

for the services, an individual with dementia had to live in one of the four counties served by the project and had

to have a memory impairment severe enough so that he or she could not stay alone safely.

Over the 3-year period of the demonstration project, 100 families received respite services. Families used

services for an average of 8 months and received an average of 8 hours of respite care per week. Although more

than 95 percent of the families who used the services reported that they were helpful, only a small portion of the

families who were potentially eligible for the services used them. Moreover, 50 percent of the individuals with

dementia who received respite services through the project died or were placed in a nursing home within 8 months

of entry into the project, and half of those died or were placed in a nursing home within 30 days of entry into the

project. Some families used the respite services as a stopgap measure while they waited for a nursing home bed for

the patient. Indeed some families waited so long to ask for help that a hospice model of care would have been more

appropriate for the patient than the companion-type respite services provided by the demonstration project.

Several features of the demonstration project were at least partially successful in addressing caregivers’

concerns about the use of services. The training provided for the respite workers reassured caregivers that the respite

workers could care for people with dementia effectively. The training was unique in that it was open to anyone, and

prospective client families were encouraged to attend This open training offered families a preview of the workers

and their skills and created a sense of trust between the workers and the families.

The flexibility of the respite services that were offered and the workers’ responsiveness to the needs of both

the patients and their families also helped to overcome some caregivers’ reluctance to use respite services. Respite

workers performed housekeeping, meal preparation, personal care, and other functions. They also took patients and

their caregivers to the doctor or beauty shop and provided companionship for the caregiver as well as the patient.

Because the demonstration project considered the family unit as the client, caregivers were accepted as legitimate

recipients of care.

The nurses who supervised the respite workers and functioned as case managers for the patients and families

were another strength of the Duke project. During their monthly visits to monitor the respite services, the nurse

supervisor/case managers provided a variety of services for the patients and caregivers, including screening

caregivers for high blood pressure and other health problems, reviewing and revising the patient plan of care, and

providing individualized teaching and counseling. As caregivers developed a trusting relationship with a nurse

supervisor/case manager, they became more open to referrals, and many increased their use of other community

services,

The willingness of the nurse supervisor/case managers to accommodate patients’ and caregivers’ preferences

with respect to respite workers also helped to overcome caregivers’ reluctance to use services. Although all the

respite workers had similar training, some patients and families had strong positive or negative responses to certain

workers. Sometimes it was the worker’s gender, age, beliefs, race, or appearance that prompted these strong

reactions. When the nurse supervisor/case managers assigned respite workers in accordance with patients’ and

caregivers’ preferences, the patients and caregivers were more comfortable with the services. Some caregivers fear

that accepting any outside help means relinquishing family control to strangers. Having the nurse supervisor/case

managers acknowledge their preferences with respect to respite workers reassured caregivers that they were still in

control.
Chapter 3-The Need for Outreach and Case Management ● 119

The dependability and continuity of respite services were important to caregivers in the Duke study. Caregivers

came to cherish their time off, and tardiness or absence of the worker was disappointing. For some caregivers, it

was easier not to plan on time off than to plan the time and be disappointed. Continuity of respite workers was also

critical to caregivers’ acceptance of services. With too much turnover of assigned respite workers, some families

lost adaptive energy and stopped using the services.

One important finding of the Duke demonstration project was that many caregivers of individuals with

dementia can accept respite services more easily if the services are presented as being for the patient rather than the

caregiver. At the beginning of the project, the respite services were promoted as providing relief for caregivers. It

quickly became apparent that many caregivers were reluctant to spend money for relief for themselves when faced

with the deterioration of a family member. When the initial approach was changed, and the respite services were

presented in terms of their potential benefits for patients, caregivers responded more enthusiastically.

Many of the family caregivers in the Duke project considered the use of services more acceptable if the services

were connected to the health care system rather than to the social service system. Social services seemed to have

a ‘‘charity stigma’ that was troublesome to some caregivers. Moreover, some caregivers who believed that their

relative was ‘‘sick’ seemed to prefer that recommendations about services be made by a physician rather than a

social worker.

In 1988, Duke University began another 3-year demonstration project to test an intervention intended to

facilitate the timely use of all kinds of services for people with dementia. This new project is based in a health care

setting (an outpatient memory disorders clinic) because of the previous project’s findings that caregivers prefer

health-related services. Clinic physicians refer caregivers to social workers who are knowledgeable about services

for people with dementia. The social workers then develop an individualized service plan with the caregiver and

facilitate and monitor the plan over an 18-month period.

SOURCE: L.P. Gwyther, “Barriers to the Appropriate Use of Community-Based Services by Families of Persons With Dementia,” contract

report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC, June 1988.

care. Given these concerns about future costs, many are unaware that they need services, or are unable to

of the caregivers felt they could not afford even $10

a week for respite services.

Implications for an Effective System To Link

People With Dementia to Services

The characteristics, feelings, and perceptions

discussed in the preceding sections stop some people

with dementia and some caregivers from using

services. Some of these individuals probably do not

need the services, but others do. For example, some

caregivers who say that they do not need services or

that they do not need services “yet” actually do

need services for their own well-being and for the

well-being and safety of the patient (88,514). It is

unclear whether or to what extent caregivers should

be encouraged to use services the caregivers say they

do not want or need. On the one hand, encouraging

people who say they do not want services to use

them seems absurd when there are not enough

services to meet the needs of people who are asking

for them. On the other hand, some commentators

have noted that it is often the most isolated and

objectively burdened caregivers who say they do not

want or need services (88,291,418,688). Likewise,

some people with dementia who refuse services, or

arrange services are very confused, afraid, and

perhaps in physical danger because of their dementia.

Everyone has a different opinion about who needs

services, but there is little question that some people

with dementia and some caregivers who do not use

services for any of the reasons discussed in the

preceding sections do in fact need services. Improved public education and information and referral programs might make it possible for some of

these individuals to contact service providers on

their own, but some patients and families still would

not be willing or able to do so. For this reason, OTA

concludes that in addition to public education and

information and referral, outreach and case management are essential components of an effective

system to link people with dementia and their

caregivers to services.

The Need for Outreach

Outreach is defined in this OTA report as any

active, individualized method of identifying people

who need services but are unlikely to respond to

public education programs or to contact an informa-
120 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

tion and referral source on their own.7 Outreach may

be needed for people with dementia who live alone

and have no relative or friend to help them; these

individuals are particularly unlikely to request

services on their own. Outreach also maybe needed

for overburdened caregivers who are not connected

to a community agency or individual health care or

social service provider. It is not clear how many

patients or caregivers are included in these categories. It is clear, however, that the best possible public

education and information and referral programs

would not be effective in linking many of these

individuals to services.

Outreach to identify people with dementia who

are in need of services can take any of several forms.

One way to conduct outreach is to screen individuals

at places like senior centers and senior nutrition

sites. Another way is to have health care and social

service professionals and other service providers

who interact with elderly people and their families

identify people with dementia who may need

services.

Although the two methods of outreach just

mentioned would reach some people with dementia

and their caregivers, neither approach would reach

isolated patients and caregivers who do not go to

senior centers’ or senior nutrition sites and who do

not interact with health care and social service

professionals or other service providers. A third

method of outreach is to send paid or volunteer

workers out specifically to look for potential clients

(97). Although this method has been successful in

reaching people with various kinds of service needs

who would not have been reached otherwise, the

method requires a major commitment of resources

by the sponsoring agency and is therefore difficult to

sustain for long periods of time.

An outreach method that can be sustained over

time and is likely to reach isolated people with

dementia and isolated caregivers is a “gatekeeper

program” that makes use of the observations of

individuals such as mail carriers and utility meter

readers who come into contact with many individuals in the course of their regular daily activities. The

gatekeeper programs that have been implemented in

Spokane, Washington, several rural counties in

Iowa, and in other jurisdictions offer models for

outreach that closely match the needs of isolated

people with dementia and their caregivers (97,

148,456,688) 8. The Spokane program recruits mail

carriers, utility meter readers, and other individuals

who interact with many people in the course of their

regular activities and trains them to identify isolated

elderly people who may need assistance and to

notify a central agency. In addition to mail carriers

and utility meter readers, gatekeepers may include

apartment managers, police, pharmacists, grocers,

delivery persons, and others. To become gatekeepers, these individuals do not have to become case

workers or counselors; they do have to be trained to

notice signs that an elderly person is confused, ill, or

otherwise at risk. When a gatekeeper identities an

individual who seems to be at risk, the gatekeeper

phones a central agency. The central agency takes

responsibility for contacting the person and assessing his or her need for assistance.

The Need for Case Management

The term case management is used in a wide range

of contexts, and its precise meaning is often unclear.

Many commentators agree, however, that case

management includes the five functions shown in

table 3-l—namely, assessing a client’s needs, developing a plan of care, arranging and coordinating

services, monitoring and evaluating the services

delivered, and reassessing the client’s situation as

the need arises (22,43,59,110,271,382,572,574,58 1,

657,757,769,891,902). As defined by OTA in this

report, case management is a process that includes

these five functions.

Individuals with dementia who are likely to need

case management include those who live alone and

have no relative or friend to help them and those

whose relatives live too far away to monitor their

care or reevaluate their needs on a regular basis. Case

management is also likely to be needed by some

individuals with dementia who have an informal

caregiver, including those whose caregivers are

unable to define their service needs, reluctant to use

needed services, or unable to arrange services for

any reason. Because of the complexity and fragmen7some ~enci= and comen~ton ~ tie term outreach in a sense that is different from the sense in which it k uwd by OTA in tis rqort. ~ey

use it to refer to programs or services that an agency provides outside the agency. Some of these programs and semice~.g., lectures given by agency

staff members to senior citizens, caregiver suppo~ and other community groups-me effective in reaching some people with dementia and their

caregivers but are unlikely to reach isolate~ confused patients or isolated caregivers. In the context of OTA’s model in this repofi such programs and

services are considered public education.

s~e gatekq~ Pmwm in Spokane, WA, k described further in box 8-C in ch. 8.
Chapter 3-The Need for Outreach and Case Management . 121

tation of services in many communities, individuals

with dementia who need several different services

are likely to need case management to arrange and

coordinate the services of multiple providers. It is

not clear how many people with dementia or how

many caregivers are included in these categories.

Despite the general agreement about the five case

management functions listed earlier, there are many

unresolved definitional and practice issues with

respect to case management. First, some commentators include other functions-e. g., case finding,

screening, patient and family education, and counseling-in their definitions of case management.9

Second, the implementation of each of the case

management functions varies, depending on factors

such as the goals and training of the case manager,

the number of clients the case manager has, the type

of the agency for which the case manager works (if

any) and the other functions of that agency, and the

extent to which the agency or independent case

manager provides services in addition to providing

case management. The same factors also influence

the relative importance case managers place on

different functions. Depending on these factors, for

example, one case manager may focus primarily on

arranging and coordinating services, spending most

of her or his time making arrangements for specific

services and less time on assessing the client needs

and developing a plan of care. Another case manager

may focus more on the assessment and care planning

functions, spending most of her or his time talking

with patients or caregivers about the problems they

are facing and what services, if any, would be

helpful.

A third unresolved issue is the relationship

between case management as an administrative

process and case management as a clinical process.

In agencies that allocate services and funding for

services, case managers are frequently responsible

for “administrative” tasks such as determining

people’s eligibility for services, authorizing services

and funding for services, and monitoring the provision of services. When case managers are responsible for these administrative tasks, the five case

management functions shown in table 3-1 are

modified to include the tasks. Thus, for example, the

function of assessing a client’s needs is modified to

Photo credit: Bill Adams

A method of outreach that closely matches the needs of

isolated people with dementia is a “gatekeeper” program

that relies on mail carriers and others who have daily

interactions with many people to identify elderly people

in need of assistance.

include administrative procedures for determining a

client’s eligibility for services. The functions of

developing a plan of care and of arranging and

coordinating services are modified to include administrative procedures for selecting service providers and authorizing benefits. The functions of

monitoring the services delivered and of reevaluating the client’s needs are modified to include

procedures to recertify the client’s eligibility for

services and to account for the services and funds

that are used.

In some agencies that allocate services and

funding for services, case management seems to be

primarily a series of administrative tasks intended to

allocate benefits in accordance with agency or

program regulations. In other agencies, case management seems to be primarily a‘ ‘clinical’ process

in which the case manager functions more as a

professional helper, counselor, and client advocate

than as an administrator of benefits. If it were

possible to make a clear distinction between case

% the context of the model for a linking system described in this repo~ O’E4 considers those activities that are usually involved in case finding

and screening to be part of the public educatioq information and mfe~ and outreach components of the system and the assessment function of the

case management component of the system. Patient and family education are considered services that maybe needed for people with dementia (see table

1-2 in ch.1). The question of whether counseling shotdd be part of the case management component of a linking system is discussed later in this chapter.
122 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

management as an administrative process and case

management as a clinical process and call one case

management and the other something else, it would

be easier for everyone to understand and communicate clearly about case management. In reality,

however, that distinction does not hold up. Many

case managers who administer benefits for their

agencies perceive themselves as professional helpers, counselors, and advocates and perform the five

core functions in much the same way as case

managers who do not administer benefits.

In a study by the University of Washington, 127

case managers in agencies that allocate services and

funding for services in Oregon and Washington

State were asked to rate the importance of 11

possible goals of case management (47). All these

case managers’ jobs involved administrative tasks

related to allocating services and funding for services, but the goals they identified as most important

had to do with helping and advocacy. Table 3-3 lists

the goals of case management in order of their

average ranking by case managers in Oregon and

Washington. In the view of these case managers, at

least, the administrative and clinical aspects of case

management are intertwined.

In addition to these definitional and practice

issues with respect to case management, there are

many other unanswered questions about case management in a system to link people with dementia to

services. These questions are discussed in a later

section of this chapter.

WHAT IS SPECIAL ABOUT

CASE MANAGEMENT FOR

PEOPLE WITH DEMENTIA?

Except for anecdotes and case histories, very little

has been written specifically about case management for people with dementia. OTA is not aware

of studies specifically designed to compare case

management for people with dementia and case

management for nondemented people. Many research and demonstration projects that involve case

management have included subjects with dementia,

but with a few exceptions, the findings of those

research and demonstration projects have not been

analyzed for demented v. nondemented subjects.

Table 3-3-Ranking of Certain Goals of

Case Management by Case Managers in

Oregon and Washington State

Rank Goats

1

2

3

4

5

6

7

8

9

10

11

To assure that services given are appropriate for the

needs of a particular client.

To facilitate the development of a broader array of

noninstitutional services.

To follow clients to guarantee the continued appropriateness of services.

To improve client access to the continuum of long-term

care services.

To target individuals most at risk of nursing home

placement in order to prevent inappropriate institutionalization.

To support the client’s caregivers.

To serve as bridges between institutional and communitybased care systems.

To promote quality and efficiency in the delivery of

long-term care services.

To enhance the coordination of long-term care service

delivery.

To prevent inappropriate use of hospital inpatient

services.

To contain costs by controlling client access to services.

especially high Cost services. .-

SOURCE: C.D. Austin, E.F. Borgatta, E.A. Roberts, et al., Improving

Access for Eiders: The Role of Case Management: Final Report

(Seattle, WA: University of Washington, January 1987).

Some aspects of case management are undoubtedly similar for demented and nondemented people,

but it is easy to imagine ways in which the

characteristics and care needs of people with dementia might change the case management process,

make it more difficult, and/or limit its effectiveness.

The process of assessing an individual’s needs may

be more difficult in the case of individuals with

dementia, e.g., because such individuals often are

not a good source of information. The process of

planning care maybe more complicated for individuals with dementia because of the fact that some

demented individuals are unable to participate in

decisions about services.l0 The process of arranging

services may differ for people with dementia because such people (unlike many nondemented elderly people) often are not able to assist with the

arrangements. It also may be more difficult to find

services for people with dementia or to select an

appropriate service provider. Since people with

dementia are often unaware that they need help, they

may be more likely than people without dementia to

refuse needed services. Lastly, the process of monitoring and evaluating services may be more difficult

l~e problem involved k det ermining the decisio nmaking capacity of individuals with dementia and making deeisions about services for people

with dementia who are not capable of making decisions for themselves are discussed in ch. 4.
Chapter 3--The Need for Outreach and Case Management ● 123

if the individual receiving the services is too

confused to report problems with the services.

To explore the question of what is different or

special about case management for people with

dementia, OTA contracted for an exploratory study

that involved interviews with case managers in five

Pennsylvania AAAs and family caregivers, most of

whom had interacted with the AAA case managers

(934). The results of the study are discussed in the

following section.

Findings From an Exploratory Study of Case

Management for People With Dementia

In 1988, a study was conducted for OTA in

Pennsylvania to learn about:

case managers’ views regarding the unique

aspects and difficulties of working with people

with dementia and their families, and

family caregivers’ views regarding the process

by which case managers arrange services for

their relative with dementia (934).11

The study was done in four counties in central

Pennsylvania and involved in-depth interviews with

15 staff members from five AAAs and 46 family

caregivers of people with dementia, most of whom

had received some services through one of the AAAs

(934). The 15 AAA staff members who were

interviewed for this OTA study included the case

management supervisor and two other staff members selected by the supervisor at each AAA; the

staff members selected by the supervisors included

eight case managers and two case aides. All 15 AAA

staff members are referred to as ‘case managers’ in

the following discussion.

The AAAs in Pennsylvania provide some services

directly or through contracts with other agencies.

Elderly people who come to an AAA in need of

services are generally evaluated by a case manager,

who may then arrange the services for them. If they

are not eligible for the AAA’s services or if they

need services the AAA does not provide, the case

manager refers them to other agencies.

Case managers in Pennsylvania’s AAAs do not

necessarily perform all five case management functions for all their clients, and the AAA case

managers interviewed for this OTA study interacted

with some of their clients only briefly to determine

eligibility or refer them to other agencies. In that

sense, they were not always providing case management. Moreover, some of the family caregivers the

case managers interacted with may not have needed

case management. The observations of the case

managers and the family caregivers are instructive,

however, with respect to the question of what is

special about working with and arranging services

for people with dementia.

The samples of case managers and family caregivers who were interviewed were both samples of

convenience, not representative groups, and thus

allow for a preliminary (rather than a definitive)

inquiry into questions about working with and

arranging services for people with dementia. The

case managers did not know which family caregivers

were interviewed for the study. When they spoke

about families of people with dementia, they were

reflecting on their entire caseload, and their comments do not refer specifically to families that were

interviewed.

Perceptions of the Case Managers

The interviews with the case managers were based

on a questionnaire designed to elicit information

about the types and adequacy of services provided

for people with dementia and problems case managers confront in working with and arranging services

for people with dementia and their families12 (934).

Although discussions with the case managers inevitably turned to the limited availability of needed

services, the primary focus of the interviews was the

linking process.

The Types and Adequacy of Services Provided

for People With Dementia.--Most of the case

managers said that some of the needs of people with

dementia are being met (934). They indicated a need

for more respite services and more in-home personal

care. Another problem noted in some counties was

the insufficient availability of nursing homes and

board and care facilities able to manage patients with

11A comple~ report of the OTA-COmmiS sioned study in Pennsylvania is available from the National Technical Information Service in Spri.ngf3el~

VA (see app. A).

lzTo e-e that the case managers had a uniform set about what was meant by dementiz they were told that the researchers were interested in their

“memory-impaired” clients. “Memory-impaired” was defiied as having a diagnosis of Alzheimer’s disease or dementia and/or signillcant functional

impairment due to cognitive dei3cits.

89-150 - 90 - 5
124 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

disruptive behavior. A third problem noted by some

of the case managers was transportation. They said

that although people with dementia often need

transportation-e. g., to a doctor’s appointment-the

existing transportation services are not appropriate

for them because no escort is provided, and the

patient could get lost, forget why he or she was out,

or encounter other difficulties.

Even with existing resource constraints, some

case managers showed considerable ingenuity and

persistence in stretching limited resources to the

maximum (934). One case manager commented:

There’s a huge gap between what is needed to

maintain someone in the community and when they

need nursing home care. We patch and bandaid, and

people see it as a lifeline and are glad for it (934).

Unique Aspects and Difficulties of Working

With People With Dementia and Their Families—

Several general themes emerged in case managers’

comments about working with people with dementia

and their families (934). First, the case managers

unanimously agreed that working with people with

dementia and their families takes more time and

effort than working with other clients. Second, the

case managers indicated a need for more flexibility

in their jobs to work effectively with dementia

clients. They said they need to be able to take the

person to a service program for the first time, to be

present when an aide frost comes into the home, and

to take clients to the doctor, drug store, or other

places. These kinds of assistance may be needed

even for clients with a supportive family, since the

family is not always available.

Problems in Working With People With Dementia Who Live Alone—The case managers said

that many people with dementia who are served by

the AAAs live alone and have no family or other

caregiver to help them (934). They noted several

ways in which working with these patients is

difficult. One problem is getting the patient to

recognize his or her need for help and to accept

services. They also pointed out that assessment is

difficult if a reliable informant is not available at the

initial assessment. One said:

You have to call other people if the pieces of the

dementia patient’s story don’t fit. You have to put a

puzzle together. Call a daughter. Find out who else

is involved. To determine eligibility, you have to

hunt for papers. Finding information takes time

(934).

The case managers said that people with dementia

usually cannot make arrangements for services

themselves or remember arrangements that are made

for them. One case manager noted:

When they need SSI or other benefits or services,

they can’t do it for themselves. They couldn’t handle

the phone calls or remember the details (934).

Case managers said that people with dementia

who live alone are often fearful and suspicious. One

said that she calls clients with dementia before a

service provider is scheduled to arrive: ‘‘I make

them aware someone else is coming to provide the

service, and it’s not me who will be coming out. A

lot of them are skeptical and have been taken

advantage of (934).

Another case manager described how she works

with a confused client who lives alone and has no

family:

To get in to see her, I told her I was from the senior

center, not the agency. That seemed to help establish

trust at first. She doesn’t really know who I am or

where I come from, but she thinks I’m a godsend. We

go from problem to problem with her. I take care of

one need, and then wait for a new problem to arise

(934).

A third case manager told about a case of hers that

illustrates the difficulty of working with someone

who cannot report his or her problems (934). The

client lived alone in a senior housing facility. Her

personal hygiene was sometimes a problem, but the

case manager did not think to check her feet. One

day, a home health nurse visited the client for other

reasons and found the woman’s toenails had curled

around and were growing into the bottom of her feet.

The case manager had taken her to the doctor a week

earlier, but the doctor did not check her feet either.

A nurse comes to the senior housing facility once a

week but stays in her office, waiting for people to

come to her. As the case manager noted, confused

residents cannot remember when the nurse is there

and often fail to report problems, as happened in this

instance.

Some case managers were clearly more comfortable than others working with dementia patients who

live alone, and they seemed to do it well (934). They

would find an entree, establish a relationship and

give the client reminders rather than expecting

him/her to remember. The case managers who

appeared successful with this task also tended to
Chapter 3—The Need for Outreach and Case Management ● 125

view it as a challenge in which they would somehow

piece together a service program from the patchwork

of available services. Sometimes this task involved

bending procedures a little, and it always involved

spending more time with the person than with other

clients.

Problems in Working With Families of People

With Dementia-The case managers said that

families of people with dementia often wait until a

crisis to seek help (934). At that point, the family

may be too desperate to wait for services, or the

available services may be insufficient to meet the

patient’s and family 's needs. One case manager said:

A lot of times, the family has burned out before we

get the referral. They want us to do everything. They

want someone to come stay with the patient, help

with bathing, or do the finances. Families don’t give

us the time to work out all these things, though we

could do it (934).

The case managers cited many of the same

reasons discussed earlier in this chapter as to why

families wait until a crisis to seek help, e.g., families

believe they should “care for their own,” they do

not want to leave their relative with strangers, and

they feel guilty about using services (934). The case

managers also said that some families are deterred

from seeking help because the patient denies needing help or resists when it is provided.

Although most of the case managers noted

families’ reluctance to seek help, two case managers

reported that families of people with dementia were

more eager than the families of other elderly clients

to use services (934). One case manager said:

Families are anxious, stressed, overwhelmed,

scared. They will seek out help more readily than

families of physically disabled (934).

According to the case managers, the amount of

stress experienced by families of people with

dementia contributes to the difficulty of helping

them (934). This problem is exacerbated, of course,

when families wait until they are at the end of their

rope to seek help.

Some case managers distinguished between families who are already involved with the patient and

families who are drawn in reluctantly (934). In their

view, reluctant families become involved only when

the situation has gotten so serious it cannot be

ignored, or when they are told to get involved by

someone else, such as the patient’s doctor, neighbors, or the AAA. Often they are particularly

reluctant to get involved if doing so would require

managing the patients’ finances or placing the

patient in a nursing home. The case managers said

reluctant families are difficult to work with because

they often do not follow through on treatment plans.

Several case managers commented on some

families’ fear that agencies will take control of the

patient (934). One said, ‘‘There is a fear of agencies,

that they may pull the elder out of the home.”

Another said, “They fear I will take over, and I

won’t.” This issue of control arose again strongly in

the interviews with families.

Some case managers raised another issue that was

difficult for them in working with families of people

with dementia—that the families persisted in providing care at home beyond what the case manager

or physician felt was appropriate (934). Four case

managers referred to families’ refusal of nursing

home placement in these circumstances as ‘denial’

and saw their role as breaking down the family’s

denial and arranging nursing hone placement. They

put more emphasis on that activity than on arranging

services for home care. OTA’s contractors concluded that these case managers were doing what

they felt was in the patient’s and family’s best

interest. The case managers felt that some families

were coping with intolerable caregiving situations

and that too few services could be provided to

support continued caregiving at home.

Other case managers saw their role as doing what

they could to support home care (934). They

provided information about and assisted with nursing home placement, but they wanted families to

make the decision about placement, except in cases

of clear danger to the patient.

Perceptions of the Family Caregivers

The 46 family caregivers interviewed for the

study in Pennsylvania included some caregivers

who were identified by the AAA case managers and

some who were recruited independently (934). The

primary sources of the independent sample were

support groups, an adult day program, and other

sources. Despite these sources, it turned out that all

but two of the caregivers had been in contact with
126 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

and received at least minimal assistance from an

AAA. 13

All the caregivers were contacted by an interviewer who explained the study and arranged an

interview (934). Interviews were conducted in the

family’s home or the patient’s home if they lived

separately. There were very few refusals.

The mean age of the patients whose caregivers

were interviewed was 77 years (934). Thirty-six of

the patients were living at home; 9 were living in a

nursing home or board and care home; and 1 had just

died. All but four of the patients had a diagnosis of

Alzheimer’s disease or another dementing disease,

and in those four cases, the patient’s history and

functioning were consistent with dementia.

The mean age of the 46 caregivers was 55.

Eighteen of the caregivers were spouses of the

patient; 20 were daughters or daughters-in-law, and

8 were other relatives (934). Duration of caregiving

averaged 4 1/2 years, with a range of 3 months to 14

years. Nineteen of the 46 caregivers (41 percent) said

they had someone they could count on as backup

caregiver, whereas 27 (59 percent) said they did not

have a backup caregiver.

Sources of Information About Services-The

caregivers said they most often learned about formal

services from the AAA, physicians, and other family

members (934). When asked whom they would turn

to for more information, caregivers noted the AAA

most frequently. Many caregivers said the patient’s

doctor did not refer them for case management or for

home care. Most physician referrals apparently were

for nursing home care.

Overall, about half the family caregivers said they

had received enough information about services, and

half said they had not. Forty-one caregivers (89 percent) said it would be extremely or very helpful to

have a central source of information about services.

Use of and Satisfaction With Formal Services—

The caregivers reported using various kinds of

services, including personal care (22 families),

respite care (14 families), and adult day care,

homemaker, legal and financial services, and homedelivered meals (11 families each) (934). They

generally were satisfied with the services they were

using. Almost unanimously, however, they said they

could use “a little more help. ” Sometimes, “a little

more” was a global understatement of the desperation the caregivers felt, but in other cases, it meant

that a little assistance-an occasional phone call or

a couple of hours of respite a week—would go a long

way.

Despite their general satisfaction with services,

some caregivers complained about respite and personal care workers who did not show up or were

poorly trained (934). Many of the caregivers also

complained about the inflexibility of the service

system. They were upset about not being able to

schedule helpers at a convenient time or specify a

particular worker. They complained about the lack

of services on evenings and weekends and about

services that excluded patients with behavioral or

emotional problems or severe fictional impairments.

As a result of these difficulties, many caregivers

were frustrated (934). Some dropped out of the

service system altogether and used no services. A

few hired home health aides privately. Others said

they learned how to work with agencies to get what

they wanted. One caregiver said that she had gone

through three home health agencies and 10 nurses

whom she thought were not adequate. She now has

worked out an arrangement with a home health

agency so they send only their better trained nurses.

The caregivers said that they could accept services more easily if the services were therapeutic, not

just “babysitting (934).” Moreover, like the caregivers who received services from the Duke respite

care demonstration project, many of these caregivers

said they had difficulty accepting services if the

focus is on their needs and that they could accept

services more easily if the services are for the

patient. Many of the caregivers did not see a

connection between their own physical and psychological well-being and their ability to continue

caring for the patient.

Interactions With AAA Case Managers—As

mentioned earlier, all but 2 of the 46 family

caregivers in this study had had at least some contact

with an AAA (934). The caregivers’ overall satisfaction with all these interactions was quite high. One

caregiver, a 53-year-old woman who was caring for

her mother-in-law with Alzheimer’s disease, said:

13This fiiding should not& interpreted as indicating that most fandies are in contact with an AAA or are r@X.iv@ services frOm ~AA& tie re~t

is probably a function of the sampling meth@ since people who attend SUppOrt groups or a day care program are likely to use other services (934).
Chapter 3--The Need for Outreach and Case Management ● 127

The AAA is the best link for help with the elderly.

We have been well pleased. We recommend them to

anyone with an elder. They can link you up to all the

help that is out there. They are concerned, they

follow-up, and they do their homework (934).

Another caregiver, a 63-year-old woman who had

taken care of her mother with Alzheimer’s disease

until the mother was placed in a nursing home, also

was very pleased with AAA case management. The

primary assistance she received was an assessment

and help with nursing home placement. She said:

The AAA returned calls, the staff was compassionate and helpful. They gave us time. They didn’t

make us feel unimportant or an imposition (934).

Despite the caregivers’ generally positive attitudes about AAA case management, they did note

several problems (934). Caregivers complained

about overly bureaucratic procedures, particularly

when steps they considered unnecessary were required in order to arrange services. For example, one

caregiver felt she received a “runaround” when

scheduling respite services that were already authorized by the AAA case manager. She said she frost had

to call the case manager, who then called the agency

providing the services. In her view, this process led

to additional slipups. She said she would have

preferred to arrange the services herself. Other

caregivers agreed. When asked, “If someone were

available to arrange services, who would you prefer

that person to be?’ 12 caregivers (26 percent) said

they would prefer to do it themselves; 29 (63

percent) said an agency should do it; 3 (7 percent)

said both; and 2(4 percent) named other alternatives.

One caregiver, a 33-year-old woman who had

been caring for her mother-in-law for 14 years, said

that the critical factor in case management is having

someone to talk to (934). She said the AAA case

manager had helped her by spending time with her,

allowing her to talk out some of her frustrations, but

that she would have preferred to arrange services

herself.

Some of the caregivers understood the process by

which AAA case managers authorized and arranged

services, but most did not (934). Several said they

did not know how they were identified to receive

help in the first place. They said someone from the

AAA “just showed up one day,” or they received a

letter saying they were eligible. One caregiver said

he felt the AAA came in almost surreptitiously,

without involving him. Some said they did not

understand how benefits were determined, but they

did not want to ask because they were afraid of

losing the services they were receiving.

The primary concern of caregivers was not case

managers, however, or the positive or negative

aspects of the case management process. For them,

the bottom line was services (934). Several caregivers were angry at the AAA case manager or the

AAA because of policies that denied them services

they needed. OTA’s contractors in Pennsylvania

reported the following example:

One 49-year-old widow was taking care of both

her 87-year-old mother with dementia and a severely

disabled 29-year-old daughter. The mother was

attending a day care program, which the caregiver

liked. She also got some in-home help for her

daughter. She used this help to care for both her

mother and daughter but felt that doing so was unfair

to the helper. Because of an AAA policy, she was not

able to get any in-home help for her mother as long

as the mother was in the day care program. She did

not understand this policy and was very angry with

the AAA (934).

An important aspect of satisfaction for caregivers

was having a relationship with someone in the

service system who would give them emotional

support and help them navigate the system (934).

For some caregivers, this person was the case

manager; in many cases, however, it was someone

else, e.g., the person who delivered meals to the

home or the aide who provided personal care. To the

caregivers, having an advocate in the system seemed

to make the difference between getting what they

needed or giving up. OTA’s contractors noted that

such a relationship seemed more important for less

educated and less sophisticated caregivers.

Implications for an Effective System To Link

People With Dementia to Services

The overriding consensus of the 15 case managers

in the Pennsylvania AAAs was that working with

and arranging services for people with dementia is

more difficult and more time-consuming than working with and arranging services for their other clients

(934). Many people with dementia deny their need

for services and refine services. They cannot provide

information or remember arrangements that have

been made for them. Some are fearful and suspicious. Case managers need special skills to work

with these patients. Problems that arise in working

with families of people with dementia—particularly
128 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Photo credit: Alzheimer’s

Case managers need special skills to work effectively with peel

e,

f

All

Association and Rush-Presbyterian/St. Luke’s Medical Center

ple with dementia and their families.

problems related to the tendency of families to hold

back from seeking services until the situation is

desperate-also may require special skills.

Judging from examples the AAA case mangers

gave, OTA’s contractors concluded that some of the

case managers dealt with people with dementia and

their families in very skillful ways (934). The case

managers had received no formal training for this

ability, however. Given the difficulty of providing

case management for some people with dementia

and their families, it is reasonable to suggest that

case managers need special training to work effectively with these patients and families.

The majority of the 46 family caregivers interviewed for the study in Pennsylvania were satisfied

with the services they had received and with their

contacts with the AAA case managers (934). Their

primary concerns were that not enough help is

available and that the quality of personal care and

respite services is sometimes poor.

Another concern of the family caregivers was

control (934). Caregivers want to have control over

services, particularly in-home services. They want to

have some say as to when services are provided and

who provides them. A lot of resentment was directed

at the AAAs for not allowing families to request a

particular nurse or aide. They also were angry when

bureaucratic procedures resulted in services not

being delivered. One-fourth said they would rather

arrange services themselves than have a case manager act as an intermediary.

OTA does not know whether families of people

with dementia are more likely than families of

nondemented elderly people to want to retain control

over services and how the services are provided. It

is possible that families of people with dementia

become more protective than families of nondemented people in response to the diminishing ability

of the dementia patient to plan or advocate for

himself or herself. In any event, a recognition of

families’ desire to have control over services should

be built into the case management component of a

system that links people with dementia to services.

One aspect of control is understanding the rules of

the game-in this context, how eligibility is determined and services are authorized (934). Many of

the family caregivers interviewed for the study in

Pennsylvania were mystified about how the level of

service was determined or why they received help at

all. This lack of understanding undermines their

sense of control. In the view of the advisory panel

and contractors for this OTA assessment, an impor-
Chapter 3-The Need for Outreach and Case Management ● 129

tant objective of case management with families of

people with dementia is to help them understand the

basis for decisions about services so as to increase

their sense of control.

Finally, some case managers interviewed for the

study regarded the more impaired dementia patients

as needing institutionalization, regardless of the

their families’ wishes (934). They believed that the

families could not continue to provide adequate care

and that available services were not sufficient to

supplement the families’ efforts. Other case managers made extensive efforts to support home care,

even when services were limited, if that was the

preference of the family. These differences in

approach were due to several factors, including how

comfortable case managers were in working with

people with dementia and the advice they received

from “experts, “ including one geriatric assessment

team that frequently urged nursing home placement.

In the interactions of health care and social service

professionals, case managers, and families, the issue

of when institutionalization should occur is often

couched as a professional or even medical decision.

Except in cases where there is abuse or neglect,

however, the timing of institutionalization is probably more appropriately and realistically viewed as

a question of individual values and perceptions.

Some families are willing to make tremendous

sacrifices to keep a relative at home, and, as

discussed earlier, some apparently do not perceive

objectively difficult caregiving situations as overwhelmingly burdensome. It is probably inappropriate for case managers to regard these enduring

caregivers as neurotic or to label their feelings as

“denial.” That some caregivers have conflicted

motives is obvious; they may also have sincere and

profound beliefs about what they are doing. They

often continue home care despite intense pressure to

institutionalize from doctors, service providers, and

other family members. If a case manager pushes

family members to institutionalize their relative,

they may withdraw from the service system completely and consequently receive no services (934).

It is the opinion of OTA’s contractors and the

advisory panel for this study that except in cases of

abuse or neglect, case managers should inform

family caregivers about all their options, including

nursing home placement, and allow them to make

the decision. The question of what constitutes

sufficiently poor family care to trigger a decision to

institutionalize a dementia patient over the objections of his or her family requires further analysis.

UNRESOLVED QUESTIONS ABOUT

CASE MANAGEMENT IN A

SYSTEM TO LINK PEOPLE WITH

DEMENTIA TO SERVICES

Although OTA has concluded that case management is an essential component of an effective

system to link people with dementia to services,

many questions remain to be answered about case

management in such a system. Several of these

questions are discussed further below:

. To what extent should a linking system try to

maintain at home individuals with dementia

who live alone and have no informal caregiver?

. Should counseling be part of case management

in a linking system?

. In general, should families be regarded by a

linking system as “co-case managers” or

‘‘co-clients’

. How many people with dementia need case

management?

. How much would case management in a

linking system increase the use of services?

The answers to these questions have implications for

the design and operation of the case management

component of a linking system and for the job

description and skills of case managers employed by

the system.

To What Extent Should a Linking System Try

To Maintain at Home Individuals With

Dementia Who Live Alone and Have No

Informal Caregiver?

At least 20 percent of people with dementia live

alone, and as many as half of them have no informal

caregiver to assist them (see ch. 1). In developing a

system to link people with dementia to services, it is

important to decide how the system should respond

to these individuals, who may require a lot of

involvement on the part of a case manager if they are

to remain in the community.

People with dementia who live alone and have no

informal caregiver are at risk for injuries and other

problems. Some home health care agencies will not

accept them as clients because the agencies do not

want to be liable for problems that occur when the
130 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

individuals are alone (239). One question in developing a linking system is the degree of risk to an

individual that can or should be tolerated, but that

risk needs to be weighed against problems people

with dementia encounter in institutional settings. A

related question is what liability the linking system

or its case managers would incur for people with

dementia who live alone, have no informal caregiver, and are maintained at home with intermittent

services and supervision by a case manager. Both

questions require further analysis.

The case managers in the study conducted for

OTA in Pennsylvania said that providing services

that are not ordinarily considered case management—

e.g., taking a client with dementia to a program the

first time, being in the person’s home when a new

aide arrives, or driving the person somewhere if no

other source of transportation is available-is sometimes essential in implementing a client’s plan of

care (934). Such services are especially likely to be

needed for people with dementia who live alone and

have no informal caregiver. Sometimes, a case

manager can arrange to have these services provided

by a volunteer or a paid chore worker. But what if

that is not possible and the case manager judges that

failure to provide the services could cause a major

disruption to the client’s already precarious functioning? Should case managers employed by a

linking system provide the services themselves?

Some private geriatric case managers who are

hired by patients or families to provide case management provide services that are peripheral to case

management but may be essential to supporting the

patient and maintaining the patient’s independent

functioning. A 1986 survey of private geriatric case

managers conducted by Interstudy found that 16

percent of the 117 respondents provided transportation; 16 percent provided homemaker services, and

11 percent provided chore services (357). In some

cases, however, the services were provided by case

aides or other support staff members who worked

with the case manager.

Some case managers also make themselves available to their clients at any time for emergencies.

Eighteen percent of the private geriatric case managers who responded to the Interstudy survey just cited

said they provided a 24-hour hotline (357). Some

public and private case management agencies also

provide a 24-hour hotline (746). One private geriatric case manager, speaking to a National Council

on the Aging symposium on case management, told

about an instance in which one of her clients, an

elderly woman with dementia who was living alone,

became very confused in the middle of the night.

Ordinarily, a paid homemaker helped the woman get

ready for bed before she left for the evening. On this

particular night, the usual routine was not followed

for some reason. The woman with dementia became

agitated and called a friend, who then called the case

manager. The case manager went to the woman’s

house, helped her get into her nightgown, and waited

until she fell asleep to leave (136).

OTA does not known whether instances like this

occur more often in the case of individuals with

dementia than in the case of other individuals

receiving case management, but such instances do

raise questions about the appropriate role and

functions of case managers. If the occasional provision of “non-case-management’ services enables

case managers to maintain at home clients with

dementia (and perhaps other clients) who live alone

and have no informal caregiver, should a linking

system build into the case managers’ job description

sufficient flexibility to allow them to provide such

services? Alternatively, should case aides of some

sort be available in the system to provide the services

at the direction of the case manager? These questions remain to be answered.

Should Counseling Be Part of Case

Management in a Linking System?

In the context of a linking system, counseling is

most likely to be needed for caregivers who do not

use services because they feel guilty about accepting

help, fearful that others will disapprove of their use

of services, ashamed of the patient’s behavior,

reluctant to make decisions for the patient, or simply

too overwhelmed by various feelings to think clearly

about solutions to their problems. Counseling also

may be needed when family members disagree about

the patient’s care and what services are appropriate.

Lastly, counseling may be needed for some patients

who are reluctant to use services, although in many

cases the effectiveness of counseling for patients is

problematic.

It is unclear whether counseling should be part of

case management in a linking system or whether

patients and their caregivers who need counseling

should be referred by the linking system to other

sources of counseling. If counseling is to be pro-
Chapter 3-The Need for Outreach and Case Management ● 131

vialed by the linking system, however, the individuals hired as case managers by the system must have

the necessary education and training to provide it.

In General, Should Families Be Regarded

as “Co-Case Managers" or "Co-Clients"

by a Linking System?

Families of frail older people frequently perform

case management tasks themselves, acting as intermediaries between the older person and formal

service providers (85,92,1 10,467,477,753,778). Some

commentators have suggested that maximizing a

family’s performance of case management tasks

might increase the family’s satisfaction with services, meet patients’ needs more appropriately, minimize costs, and eventually decrease the need for a

paid case manager (271,753,754,758). Despite this

suggestion, few attempts have been made to help

families become better case managers (175).

One project did train and assist some families of

elderly people (including some families of people

with dementia) to perform case management tasks,

such as arranging and monitoring services (753,754,758).

Together, a social worker and a family member

developed a “case management service plan” that

allocated case management tasks between them.

Family members were given information about

community resources, and the social worker contacted them at least every 2 weeks to answer

questions, monitor their performance of case management tasks, and provide supportive counseling.

The results of the project showed that the families

who received the training and assistance accomplished significantly more case management tasks

than did a control group of families that did not

receive the training and assistance. Additionally, the

total duration of services was significantly shorter

for the older people whose families received the

training and assistance than for older people whose

families did not (753).

Interestingly, whether families received this training and assistance was not the largest predictor of

their performance of case management tasks. The

largest predictor was the cognitive status of the

patient. For both the experimental and control

groups, families of people with dementia were more

likely than families of other individuals to perform

case management tasks (753).

A linking system could regard families primarily

as ‘‘co-case managers” and attempt to maximize

families’ performance of case management tasks by

providing training and assistance to help them

perform the tasks successfully. Alternatively, a

linking system could regard families primarily as

part of the client unit, or “co-clients,” whose needs

are assessed along with the patient’s needs and

incorporated into the patient’s care plan. Families

differ, of course, and whether a specific family is

most appropriately regarded as a co-client or a

co-case manager depends on the characteristics of

the family and the caregiving situation. The presumption of the system--i.e., whether the system

generally regards families as co-case managers or as

co-clients-is likely to affect how comfortable

families are with the system. Certainly, at least some

families of people with dementia would prefer to be

regarded as co-case managers than as co-clients,

because the role of co-case manager would allow

them a greater degree of control over services that

may be used for their relative with dementia.

Even if a linking system generally regarded

families as co-case managers, some families would

be more appropriately treated as co-clients. Determining which families could function successfully

as co-case managers (with or without training and

assistance) and which families should be treated as

co-clients would require difficult judgments by case

managers in at least some instances. To make these

judgments and to help families become better case

managers would require special skills on the part of

the case managers employed by the linking system.

How Many People With Dementia

Need Case Management?

Although OTA has concluded that case management is an essential component of an effective

system to link people with dementia to services, an

important question that remains to be answered is

how many people with dementia need case management. Most people would probably agree that people

with dementia who live alone and have no informal

caregiver to help them all need case management—

at least at the point when they become unable to plan

for themselves or manage their affairs independently

(a point that to some extent rests in the eye of the

beholder).
132 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

A somewhat more difficult question is how many

people with dementia who have an informal caregiver need case management. As noted in the

previous section, families often perform case management tasks for elderly people, including people

with dementia. If accurate information about services and funding for services were readily obtainable, more families and other informal caregivers

would be able to arrange services themselves, and

fewer people with dementia would need case management. If training and assistance were available to

help families and other caregivers perform case

management tasks, as suggested above, still more

caregivers would be able to arrange services themselves. On the other hand, some family caregivers

have intense feelings that still would make it

difficult or impossible for them to arrange services

themselves, as illustrated in one woman’s description of the process of placing her husband in a

nursing home:

Finally the dreaded conclusion was reached that

he had to go to a nursing home. No one can imagine

the devastation I reached at this time. But it had to be

done, so I had to find a way to cope. At the time of

transition to the nursing home, the most important

help I received was from the social service worker.

She made phone calls and gathered and gave me

information. There was nothing easy about it, but she

was a real buffer (670).

The woman just quoted probably could have

made the phone calls and arranged for her husband’s

admission to a nursing home herself if she had not

been so upset. There are also situations in which the

informal caregiver of a person with dementia is

almost as impaired as the patient and is totally

incapable of arranging services. In both types of

situations, most people would probably agree that

case management is needed for both the caregiver

and the person with dementia.

The advisory panel for this OTA study was

unanimous in the view that not all people with

dementia who need services also need case management. The panel particularly rejected the idea that all

family caregivers need a case manager to help them

define their service needs. While recognizing that

some caregivers need help to define their service

needs, panel members pointed out that many family

caregivers can define service needs themselves.

In apparent conflict with the advisory panel’s

view that not all people with dementia who need

services also need case management, many of the

congressional proposals to provide expanded longterm care services that were introduced in 1988,

1989, and 1990 (100th and 101st Congress) specify

that everyone who received the expanded services

would also receive case management. Under these

proposals, even people who have informal caregivers who are (or believe they are) capable of

defining their needs and arranging and monitoring

services themselves would receive case management. The case management in the congressional

proposals generally includes both “administrative”

tasks (e.g., authorizing services in accordance with

program regulations) and “clinical” tasks (e.g.,

helping people define their service needs and select

appropriate services in their communities) .14

One way for Congress to address this apparent

conflict would be to conclude that case management

is, in effect, the price of receiving long-term care

services and to assume that caregivers and others

will be willing to accept case management to get

the services-probably a reasonable assumption in

most cases. Case management is an expensive

addition to the cost of services, however (105,114).

For that reason, Congress might prefer to limit the

case management that is required for everyone to

those administrative tasks that are essential to

allocate services in accordance with program regulations, and to require or allow case management

beyond those administrative tasks only for people

who are identified as needing them by some

specified criteria.

As noted earlier, the term “case management”

means different things to different people. Thus,

various commentators’ views about whether case

management is needed in certain contexts or for

certain types of people may or may not refer to the

same “case management. ” In addition, although a

major purpose of case management is to help people

obtain the services they need, ideas about what case

management is and who needs it have come almost

exclusively from academics, administrators, policy

analysts, and case managers—not from people who

might need or use it. When people who might need

or use case management are asked, their opinions

about case management are quite different from the

IA~e dis~ction between mse management as an administrative process in which the case ~mger is P rimarily responsible for allocating services

in accordance with program regulations and case management as a clinical process in which the case manager functions more as a professional helper

and advocate than as an administrator of services was discussed earlier in this chapter.
Chapter 3-The Need for Outreach and Case Management ● 133

ideas of those other individuals, as illustrated by

findings from several studies and a fee-for-service

case management program discussed below. The

discussion below is not comprehensive, nor is it

intended to suggest that the ideas of people who have

used or may use case management are necessarily

correct about what case management is and who

needs it and that other people’s opinions on these

topics are incorrect. Rather the discussion is intended to highlight certain opinions of current and

potential users of case management that are relevant

to the questions of how many people need case

management and how many might use it.

Some insight into people’s opinions about case

management can be derived from the findings of

market research conducted for the Robert Wood

Johnson Foundation’s Supportive Services Program

for Older Persons. The research indicates that many

older people and their caregivers do not understand

what case management is or why they might need it

(318). The Supportive Services Program for Older

Persons is intended to demonstrate the feasibility of

developing a private market for in-home and community services and to design a package of such

services that people will purchase. The first phase of

the Supportive Services Program involved market

surveys in 13 localities to determine the demand for

services of various kinds. The market surveys found

that elderly people and their caregivers have three

problems with case management:

. They do not see themselves as ‘‘cases’ to be

managed.

. They do not understand why they would need

a special person or a special set of functions in

order to obtain services.

. They do not understand why they should pay

for something that, in the private sector, might

be viewed as customer service or public relations (318).

Many people who were contacted for the market

surveys expressed confidence in their ability to

define their own service needs and did not think they

would need a case manager to help (91).

Case management generally is perceived by

academics, administrators, policy analysts, and case

managers as a series of interrelated steps that

constitute a logical problem-solving process that is

directed by a case manager. The results of interviews

conducted for OTA with 46 family caregivers of

people with dementia in Pennsylvania suggest that

the caregivers had different perceptions about case

management. For example, there is no evidence

from the interviews that the caregivers perceived

case management as a logical problem-solving

process or that they regarded the case manager as the

central figure directing that process (934). Family

caregivers who were looking for services used

various sources of information and assistance. Some

of them relied less on a case manager for help in

negotiating the service system and obtaining needed

services than they relied on an in-home aide, a

volunteer who delivered meals, or the director of an

adult day care program. These caregivers saw

themselves, rather than the case manager, as directing the case management process.

The experiences of Connecticut Community Care,

a private case management agency, suggest that

people often want only certain case management

functions. Connecticut Community Care has been

providing case management for publicly funded

long-term care programs for some time and began

offering fee-for-service case management in 1986

(75). The agency markets a comprehensive case

management service that includes all the case

management functions discussed earlier in this

chapter, plus counseling, but people often purchase

single case management functions-e. g., client assessment or service coordination. Many of the

agency’s case managers have been uncomfortable

with splitting up what they perceive as interrelated

case management functions-separating client assessment from care planning, for example, or care

planning from service arrangement.

Connecticut Community Care’s fee-for-service

case management is controlled by the client, not the

case manager, and many of the agency’s case

managers have been uncomfortable with their loss of

control (75). Despite that feeling, the case managers

have been pleased with the flexibility they have in

responding to these clients’ needs and with some of

the positive outcomes they have seen. The agency’s

fee-for-service clients have been happy with the case

management services they have purchased.

The results of the Robert Wood Johnson Foundation’s market research, the interviews with family

caregivers conducted for OTA in Pennsylvania, and

Connecticut Community Care’s experiences with

fee-for-service case management suggest that different people want and need different kinds of help with

defining their service needs and selecting, arranging,
134 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

and monitoring services. An underlying theme,

however, is that people perceive themselves as being

in control of the linking process and that they want

to retain that control.

The American Nurses’ Association, the National

Association of Social Workers, the National Council

on the Aging, and other commentators state that the

primary goals of case management include empowering people, increasing people’ sense of control

over their own lives, and helping people attain their

own objectives (22,48372,58 1,893). Achieving these

goals is difficult in a complex, fragmented service

environment in which resources are limited and the

services people want are sometimes unavailable or

too expensive--and the difficulty is probably compounded when a person is cognitively impaired and

the person’s caregiver is unsure of what he or she

wants or is ambivalent about using services at all.

The difficulty is probably further compounded when

the case manager is responsible to an agency for a

series of administrative procedures to authorize and

account for the use of resources.

If the objectives of a linking system include

empowering people, increasing their sense of control, and helping them achieve their own objectives,

several requirements must be met. First, there must

be a clear recognition that these are objectives of the

system. Second, there must be guidelines for implementing them, and third, there must be training for

case managers to help them achieve the objectives.

How Much Would Case Management

Increase the Use of Services?

The extent to which case management would

increase the use of services probably depends in part

on whether the case manager has funds and authority

to purchase services for clients or just arranges

services for them. The National Lang-Term Care

Channeling Demonstration compared use of services by elderly people in three groups:

1. a “basic case management group,” in which a

case manager had only limited funds to purchase services and primarily brokered available

services for the clients;

2. a “financial control group,” in which a case

manager had funds and authority to purchase

services for the clients; and

3. a control group, in which the clients received no

case management or services through the project (although some clients received case management and/or services from other sources);

(147).

Elderly people in the basic case management group,

in which the case manager primarily brokered

services, were using 11 percent more in-home

services than the control group after 6 and 12 months

and 6 percent more in-home services after 18 months

(147). Elderly people in the financial control group,

in which the case manager had funds and authority

to purchase services, were using 22 percent more

in-home services than the control group after 6

months, 18 percent more in-home services than the

control group after 12 months, and 14 percent more

after 18 months. Thus, basic case management

without funds to purchase services increased service

use by 6 to 11 percent over the use which would have

otherwise occurred, while case management with

funds and authority to purchase services increased

service use twice that amount.

The results of a recently completed respite service

demonstration project conducted by the Philadelphia Geriatric Center (88,448) also show that case

management with funds to purchase services increased service use, but overall use was still lower

than one might have expected, given caregivers’

expressed need for respite services. The project

made respite services available to family caregivers

of Alzheimer’s patients through a case management

process. The caregivers who volunteered for the

project received an initial assessment and were

randomly assigned to a control or experimental

group.

Caregivers in the control group were given a list

of local service providers and were reassessed at the

end of the study, a year later. Caregivers in the

experimental group were offered respite services to

be provided in their home, in an adult day center,

and/or in a hospital or nursing home (88,448). A case

manager was available to help the caregivers identify their needs, to develop a care plan, to assist in

arranging respite or other services, and to provide

counseling to help caregivers with problems that

might interfere with their use of services. Interactions between the case managers and the caregivers

in the experimental group varied. The caregivers

were contacted at least every 2 months; in some

cases, contact was much more frequent.

As noted earlier in this chapter, only about half the

caregivers in the experimental group in this study

used any respite services over the course of the year
Chapter 3--The Need for Outreach and Case Management .135

(88,448). Thirty-five percent used in-home respite;

2 percent used adult day care; 7 percent used

overnight nursing home care, and 8 percent used

more than one kind of respite care. Moreover, most

of the caregivers who used respite care used very

little of it. Even though the case managers encouraged the use of respite services, therefore, overall

use of the services was still low. According to the

researchers, some caregivers were so emotionally

invested in their role as caregiver that they were

unable to accept any services, even with extensive

counseling and support. Other caregivers only slowly

came to understand the concept of respite care and

might have begun to use respite services if the

demonstration project had continued beyond the

l-year period.

A comparison of the experimental and control

groups at the end of the respite service demonstration project showed that the project intervention—

i.e., the case management, the offer of respite care,

and the respite services that were used—had no

significant effect on caregivers’ attitudes, perception

of burden, or self-reported physical or mental health

(448). The project intervention did have a significant

effect on the number of days that patients remained

in the community (447). Dementia patients whose

caregiver was in the control group were institutionalized or died an average of 22 days sooner than

dementia patients whose caregiver was in the

experimental group. Interestingly, this difference

was not between caregivers who used respite services and those who did not. Rather, it was between

caregivers who received the whole intervention—

case management, counseling, education, the offer

of respite, and any respite services that were

used—and caregivers who did not. The researchers

suggest that the whole intervention, including the

knowledge that respite services would be available

if needed, that “constituted a strain-reducing influence that fortified caregivers in the experimental

group in their resolve to defer institutionalization as

long as possible” (447).

CONCLUSION

Some people with dementia and some caregivers

have characteristics, feelings, or perceptions that

make them reluctant to use services or unable to

arrange services themselves. These individuals are

unlikely to respond to public education programs

and may be unwilling or unable to contact an

information and referral source on their own. Some

of them do not need services, but many undoubtedly

do. These individuals often include some of the most

isolated patients and objectively burdened caregivers. Outreach and case management programs are

needed to connect these people to services. Although

it is unclear how many people with dementia need

outreach or case management, it is clear that

outreach and case management are essential components of an effective system to link people with

dementia to services.

Outreach must be active and individualized to

reach isolated people with dementia and isolated

caregivers. Some initiatives that often are called

outreach, such as lectures to community groups and

publicity in various media, are effective in reaching

some people with dementia and some caregivers but

not those who are most isolated. Individualized

approaches are needed for those persons. The

gatekeeper model described in this chapter is most

likely to be successful in reaching them.

The five core functions of case management

identified in table 3-l—assessing a client’s needs,

developing a plan of care, arranging and coordinating services, monitoring and evaluating the services

that are delivered, and reassessing the client’s

needs-are clearly relevant to many of the characteristics, feelings, and perceptions that keep some

people with dementia and their caregivers from

using needed services. Clearly, case managers need

special knowledge and skills to work effectively

with people with dementia. Moreover, some adjustments may be needed in case management procedures to accommodate some-and perhaps many—

families’ preference and ability to control the

process of locating and arranging services themselves.

Finally, it is important to note that neither

outreach nor case management can compensate for

the insufficient availability of services and funding

for services. Outreach Programs can find people who

need services, and case managers often can piece

together services and funding for a client from the

fragmented service system, but the services and

funding frost must exist. Outreach and case management are essential components of a system to link

people with dementia to services, but they are not a

panacea for all the problems of long-term care.
Chapter 4

Questions That Arise in Making

Decisions About Services
CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

DETERMINING THE DECISIONMAKING CAPACITY OF

INDIVIDUALS WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Criteria for Determining Decisionmaking Capacity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

The Concept of Decision-Specific Decisionmaking Capacity . . . . . . . . . . . . . . . . . . . . .

Who Should Determine Decisionmaking Capacity? . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Methods of Enhancing Decisionmaking Capacity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Implications for an Effective System To Link People With Dementia to Services . .

MAKING SURROGATE DECISIONS ABOUT SERVICES FOR

INDIVIDUALS WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Who Should Make Surrogate Decisions About Services? . . . . . . . . . . . . . . . . . . . . . . . . .

What Criteria Should Guide Surrogate Decisions About Services? . . . . . . . . . . . . . . . .

Implications for a System To Link People With Dementia to Services . . . . . . . . . . . .

l39

141

141

144

144

146

147

148

148

152

155

CONCLUSION ....: . . . . . . . . . . . . . . . . .: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .156
Chapter 4

Questions That Arise in Making Decisions About Services

INTRODUCTION

Linking people with dementia to services involves many important decisions-what services

are needed, who will provide them, who will pay for

them, and, perhaps most importantly, whether the

person will be cared for at home or in a nursing home

or other residential care facility. Because of their

cognitive impairments, people with dementia generally become less capable of making decisions for

themselves. Their diminished decisionmaking capacityl raises difficult questions for individuals and

agencies involved in linking them to services. This

chapter considers two of these questions:

●

●

How should the decisionmaking capacity of

people with dementia-in this context, their

capacity to make decisions about services-be

determined?

How should decisions about services be made

for people with dementia who are not decisionally capable? In other words, who should be the

surrogate decisionmaker and what criteria

should guide the decisions?

Questions about how to determine whether individuals are capable of making decisions and about

how to make decisions for those individuals who are

decisionally incapable have been analyzed and

debated at length in contexts involving other populations, including mentally ill, unconscious, and

terminally ill people, and other decisions, particularly decisions about the use of life-sustaining

medical treatments and about participation in research. So far, however, such questions have not

received much attention in contexts involving people with dementia and everyday decisions about

health care, long-term care, social, and other services

that such people may need (93,327).

At the policy level, questions about how to

determine demented individuals’ decisionmaking

capacity and how to make decisions about services

on behalf of those demented individuals who are not

capable of making such decisions themselves are

often obscured by overriding concerns about the lack

of sufficient services and funding for services.2 At

the level of individual case managers and others who

arrange services for people with dementia, the

questions are often obscured by the practical difficulties of locating and arranging services in a

complex service environment. They may also be

obscured by pressures on case managers to complete

service arrangements quickly (e.g., because the

client is in an unsafe situation, the client’s informal

support system is overwhelmed, the case manager

has many other clients, or the hospital wants the

client discharged ‘yesterday’ ‘).

It is important to recognize that although questions about how to determine a demented person’s

decisionmaking capacity and how to make decisions

on behalf of decisionally incapable demented clients

are often obscured, such questions are inherent in the

process of linking people with dementia to services.

Whenever the linking process goes beyond public

education and information and referral to include the

actual arranging of services, these questions are

unavoidable. 3 Every individual or agency that arranges services for people with dementia necessarily

answers the questions in one way or another-either

by following explicit procedures for determining

decisionmaking capacity and making decisions on

behalf of clients who are decisionally incapable or

by making implicit judgments. If Congress mandated a system to link people with dementia to

services, the agencies that constituted the system

would confront the problems of determiningg decisionmaking capacity and designating surrogate decisionmakers whenever they helped to select or

arrange services for people with dementia. — —

IA~ di~w~ la~r, ~c~ptw distingllishes beW~ tie terms “decisiomnaking capacity,” “decisionally capable,” ~d “d=isio~~

incapable” on the one hand and the terms “comw@cy,” “competent” ~d “incowtent>” on the o~er. The terms “COmWtenWS” “co~etm~

and “incompetent” are used only to refer a person’s legal status. The terms “decisionmakm“ g capacity, “ “decisionally capable” and “deaslonally

incapable” are used to refer to a person’s capacity to make decisions in a more general sense. These terms are unfamiliar to many people and their use

sometimes results in cumbersome sentence constructions, but OTA believes that these terms are more accurate than other available terms that might be

used to represent the concepts being discussed. OTA apologizes to readers who find the terms unfamiliar or their use contorted.

TI’he lack of sufficient services and funding for services is a topic that was addressed in OTA’s 1987 report losing a MilZion Mnak: Confronting

the Tragedy of Alzheimer’s and Other Dementias (831).

3~~ n~ for a_systa t. g. ~yond public edu~tion ad info~tiorl ~d ref~ in order to s-e certain typt% of dementia patients ~d

their caregivers is discussed inch. 3.

–139-
140 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Most agencies that link people with dementia to

services have no explicit policies or procedures for

determining their clients’ decisionmaking capacity

or for making decisions about services on behalf of

clients who are decisionally incapable. In the

absence of explicit policies and procedures, case

managers and others who arrange services in these

agencies must act on their own judgments about

whether their clients are capable of making decisions about services and about how such decisions

should be made for clients who are not decisionally

capable. Some of these case managers and others

may not be aware of the implications of these

judgments, and some of them may not even be

conscious of making the judgments.

Judgments about a person’s decisionmaking capacity and about how decisions should be made for

people who are decisionally incapable involve

fundamental legal rights and complex legal and

ethical issues, some of which are discussed in this

chapter. If an agency, case manager, or other

individual that arranges services for people with

dementia is not aware of the legal rights and legal

and ethical issues involved in decisionmaking, there

is little likelihood that those rights and issues will be

adequately considered when decisions about services are made.

In the context of linking people with dementia to

services, one major objective in determiningg decisionmaking capacity is to ensure that people who are

decisionally capable will be given the opportunity to

make decisions about services themselves and that

people who are not decisionally capable will be

protected from decisions that may be harmful to

them. The ultimate objective in designating a

surrogate decisionmaker and establishing criteria to

guide surrogate decisions is to ensure that the best

possible decisions are made for people who are not

decisionally capable. Establishing explicit agency

policies and procedures for determining decisionmaking capacity and for making surrogate decisions

would not guarantee the achievement of these

objectives. Nevertheless, establishing explicit policies and procedures could help focus agencies’ and

case managers’ attention on the important legal

rights and legal and ethical issues at stake in

decisionmaking and thereby increase the likelihood

that those rights and issues would be considered

when decisions about services are made.

This chapter discusses certain concepts and distinctions that are important in thinking about how to

determine people’s decisionmaking capacity and

how to make decisions on behalf of people who are

not capable of making decisions themselves. The

chapter also discusses some approaches that agencies and individuals that arrange services for people

with dementia might use to determine their clients’

decisionmaking capacity and to make decisions

about services for clients who are decisionally

incapable. Some of the concepts, distinctions, and

approaches discussed here are derived from analysis

and debate about other types of decisions (e.g.,

decisions about the use of life-sustaining medical

treatments and participation in research) and about

other client populations (e.g., mentally ill, unconscious, or terminally ill people), and they may or

may not be directly applicable to decisions about

services for people with dementia. Other concepts,

distinctions, and approaches discussed here are

derived from recently completed and ongoing research and demonstration projects that address the

problems of decisionmaking for people with dementia more directly.4

The chapter discusses many unresolved issues.

For some of the issues, there is, as yet, no agreement

about the correct theoretical resolution. For other

issues, there is agreement about the correct theoretical resolution but little understanding about how to

apply it in the context of linking people with

dementia to services.

If Congress mandated a national system to link

people with dementia to services, it could require

that the agencies that constitute the system have

explicit policies and procedures for determining

their clients’ decisionmaking capacity and for making decisions for people who are not capable making

decisions themselves. The concepts, approaches,

and issues discussed in this chapter are relevant to

the content of such policies and procedures and the

questions that would have to be answered in

developing them.

d~ese projects ~CIUde: 1) studies m&r the “Personal Autonomy in Long-Term Care Initiative” funded by the Retirement Rese=h Foudation

(327); 2) a study of hospital discharge planning for elderly people with diminished decisionmaking capacity, funded by the Florence V. Burden

Foundation and the Retirement Research Foundation (181,241); and 3) a project funded by the Ittleson Foun&tion and the Retirement Research

Foundation to train ‘temporary treatment guardians” and to refine and disseminate a‘ ‘values history questionnaire” that allows individuals to document

their preferences and values so that if surrogate decisionmaking becomes necessary in the future, it will reflect the individual’s wishes (252,802).
Chapter 4-Questions That Arise in Making Decisions About Services ● 141

DETERMINING THE

DECISIONMAKING CAPACITY OF

INDIVIDUALS WITH DEMENTIA

The extent to which individuals with dementia are

capable of making decisions about services varies.

Some people with dementia, especially in the early

stages of their disease, are quite capable of making

some or all decisions about services for themselves.

Others, in the opinion of everyone who knows them,

are incapable of making even simple decisions.

Many people with dementia fall somewhere between

these extremes.

Under U.S. law, adults are presumed to be competent unless and until factual evidence that refutes

the presumption of competency has been presented

to a court and the court has declared the person

incompetent (945). Adults who have not been

adjudicated incompetent have a legal right to make

decisions about their medical care, where and how

they will live, and how they will manage their own

affairs. The vast majority of people with dementia

have not been adjudicated incompetent. A 1986

survey of nursing homes in New York State found,

for example, that under 3 percent of the homes’

residents had been declared legally incompetent

(609), even though at least 40 percent of the State’s

nursing home residents have dementia (217).

Since individuals with dementia who have not

been adjudicated incompetent are presumed under

U.S. law to be competent, they have a legal right to

make their own decisions. Nevertheless, some people with dementia who have not been adjudicated

incompetent are, in the opinion of virtually everyone

who knows them, incapable of making important

decisions about their lives. This chapter uses the

terms ‘‘competent,” “incompetent,” and “competency” only to refer to a person’s legal status. It uses

the terms “decisionally capable,” “decisionally

incapable,’ and ‘decisionmaking capacity’ to refer

to a person’s ability to make decision in a more

general sense.

People who make judgments about dementia

patients’ decisionmaking capacity-physicians, other

health care and social service professionals, hospital

discharge planners, case managers, service providPhoto credit: Bill Adams

Some individuals with dementia are quite capable of

making decisions about services for themselves,

especially in the early stages of this disease. Surrogate

decisions should not be substituted for an individual’s own

decisions unless it is clear that the individual is incapable

of deciding for herself or himself.

ers, and others-often err by automatically assuming that any person with a diagnosis of a dementing

disease is incapable of making decisions and by

turning immediately to the person’s family for a

surrogate decisions Many commentators agree that

this practice is wrong and that surrogate decisions

should not be substituted for a person’s own

decisions unless it is clear that the person is

decisionally incapable (4,27,93,139,210,301,

417,671,901,945). On the other hand, some people

who make judgments about dementia patients’

decisionmaking capacity err in the opposite direction by assuming that a person with dementia is

decisionally capable when he or she is not. Many

commentators also agree that this practice is wrong

because it fails to protect the decisionally incapable

person from potentially harmful decisions

(93,1 19,176,183,288,671).

Criteria for Determining Decisionmaking

Capacity

Legal scholars and others have distinguished

three general types of criteria for determining

individuals’ decisionmaking capacity:

5L&e~~e, ~nY of me sate @k forces and cofi~=~ tit ~ve s~di~ tie problem of dementia beg~~~ a s~tement that people with dementia

gradually lose their decisionmakm“ g capacity, butthenjump immediately to adiscussionofmethods for surrogate decisio

out any discussion of methods for determining individuals’ decisionmakm

~g, (9%531,713) leaving

“ g capacity or supporting their ability to make decisions for themselves.
142 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

● status criteria,

. outcome criteria, and

. fictional criteria (27,671).

If one uses status criteria to determine a person’s

decisionmaking capacity, the determination is based

on the person’s status in a specific category such as

diagnosis, consciousness, or age. If one uses outcome criteria to determine a person’s decisionmaking capacity, the determination usually is based on

the “correctness” or “reasonableness” of the person’s decision as judged by other people. If one uses

fictional criteria, the determination is based on

some aspect of the individual’s functioning or

potential functioning in a decisionmaking situation

(27,671).

Some of the physicians, case managers, and others

who make judgments about the decisionmaking

capacity of people with dementia are probably not

even conscious of making the judgments, and it is

very unlikely that many of them consider whether

their judgments are based on status, outcome, or

functional criteria. Anecdotal evidence suggests,

however, that many of these individuals rely more

on status and outcome criteria than on functional

criteria.

Physicians, case managers, and others who automatically assume that any person with a diagnosis of

a dementing disease is unable to make decisions are

using a status criterion—a diagnosis of a dementing

disease. As noted earlier, the use of this criterion to

judge a person’s decisionmaking capacity is not

appropriate, because people with dementing diseases vary greatly in their cognitive abilities, and

many of them retain sufficient cognitive abilities to

make decisions for themselves, especially in the

early stages of their disease.

Physicians, case managers, and others who use the

“correctness” or “reasonableness” of an individual’s decision to judge the individual’s decisionmaking capacity are using outcome criteria. If a

cognitively impaired person’s decision conflicts

with a recommendation or decision of the individual’s physician, case manager, hospital discharge

planner, or some other caregiver, the person’s

decision may be called “unreasonable” and automatically regarded as evidence that the person is

decisionally incapable. If a cognitively impaired

person’s decision does not conflict with the recommendations or decisions of his or her caregivers, the

issue of the person’s decisionmaking capacity may

not even arise. (386,901,947).

Two different arguments are made about the

appropriateness of using outcome criteria such as the

“correctness” or ‘‘reasonableness” of a person’s

decision to judge the person’s decisionmaking

capacity. On the one hand, some argue, competent

adults have a legal right to take risks and make

foolish decisions so long as their decisions do not

encroach on the rights of others or violate the law

(41,93,181,539); people with cognitive impairments

should not be deprived of that right. On the other

hand, some argue, physicians and other health care

and social service professionals have a legal and

ethical obligation to protect vulnerable people from

danger and neglect; if these professionals think that

a cognitively impaired person’s decision threatens

the person’s safety, they are obligated to question it

(41,93,181). A middle ground that reconciles these

two arguments, in theory at least, is the view that if

a cognitively impaired person makes a decision that

seems unreasonable to others, the decision should

trigger a careful evaluation of the person’s decisionmaking capacity but should not result in an automatic judgment that the person is decisionally

incapable (945).

Physicians, case managers, and others who use

some aspect or aspects of an individual’s functioning in a decisionmaking situation to judge the

individual’s decisionmaking capacity are using

functional criteria. Two commentators discussing

discharge planning for elderly people with diminished decisionmaking capacity have defined functional decisionmaking capacity in terms of a person’s ability to comprehend the possible consequences of a plan he or she proposes (181). Other

commentators have identified four fictional criteria for deterrnining a person’s decisionmaking

capacity. Those criteria are listed below in the order

of increasing strictness:

1. making a choice;

2. evidencing an understanding of relevant information and issues;

3. rationally manipulating the relevant information; and

4. in addition to 2 and 3 above, appreciating the

nature of the situation (29).

The few courts that have considered criteria for

determin.mg decisionmaking capacity have generally adopted functional criteria rather than status or
Chapter 4--Questions That Arise in Making Decisions About Services . 143

Photo credit: Rush-Presbyterian/St. Luke’s Medical Center, Chicago, IL

A person with dementia maybe capable of making some decisions but not others.

outcome criteria (27). Most commentators also favor

the use of functional criteria to determine a person’s

decisionmaking capacity, primarily because such

criteria pertain directly to the person’s actual or

potential functioning in a decisionmaking situation

(27). Functional criteria for determining a person’s

decisionmaking capacity are more ambiguous than

status or outcome criteria, however. For that reason,

a person who uses functional criteria has to exercise

more independent judgment than a person who uses

status or outcome criteria and may therefore need

more training to make these determinations.

At least one observer has suggested that cognitive

assessment tests, such as the Mini-Mental State

Examination (218), could be used as an objective

measure of decisionmaking capacity (613). That

idea has intuitive appeal, but OTA is not aware of

any research that compares people’s cognitive ability as measured by their scores on a cognitive

assessment test and their decisionmaking capacity as

measured by some other standard, and anecdotal

evidence suggests that such scores and decisionmaking capacity may not be highly correlated. Moreover, in some cases, people’s scores on cogntive

assessment tests are not even an accurate indicator of

their cognitive abilities. Sometimes, the tests incorrectly identify people as cognitively impaired who

are cognitively normal; this situation is particularly

likely to occur when the tests are used for ethnic

minority people and people with very little formal

education (831,865).

Although commentaries on criteria for determining people’s decisionmaking capacity favor the use

of functional criteria over status or outcome criteria

as a general principle, it is important to note that

most of the discussion on this topic has occurred in

the context of decisions about life-sustaining medical treatments and about participation in research.
144 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Moreover, discussion has often focused on people

other than those with dementia (e.g., mentally ill and

terminally ill people). The implications of using

functional rather than status or outcome criteria to

determine dementia patients’ capacity to make

everyday decisions about health care, long-term

care, social, and other services have received very

little attention. Thus, it is unclear whether there are

any special considerations in the use of functional

criteria for this purpose and whether there may be

certain functional criteria that are especially appropriate for this population.

The Concept of Decision-Specific

Decisionmaking Capacity

A concept that has emerged in the legal and

ethical debate about determining g decisionmaking

capacity is the concept of decision-specific capacity.

That concept is that a person’s capacity to make a

decision may differ for each decision. A person may

be capable of making a simple decision carrying

little risk but not capable of making a more complex

decision carrying significant risks (176,178,945).

Furthermore, “a person maybe [capable of making]

a particular decision at a particular time, under

certain circumstances, but [incapable of making]

another decision, or even the same decision, under

different conditions” (93).

The concept of decision-specific decisionmaking

capacity is widely advocated and accepted (27,93,

177,671,672), but discussion about the application

of the concept has occurred in the context of single

decisions about the use of life-sustaining medical

treatments or participation in research. So far, very

little has been written about the application of this

concept in the context of situations that call for

making multiple interrelated decisions about a

person’s living arrangements and the use of various

health care, long-term care, social, and other services

over time.

Applying the concept of decision-specific capacity in situations involving multiple interrelated

decisions over time may be considerably more

difficult than applying the concept in situations

where a single decision is needed. As an example,

consider the dilemma raised in the following instance. A cognitively impaired man who requires

supervision and personal care decides that he wants

to remain at home with homemaker assistance

instead of entering a nursing home. The man’s

physician, the case manager, and others agree that

the man is capable of making that decision, and so

the case manager arranges for homemaker services.

Subsequently, however, the man refuses to pay or

repeatedly fires the homemakers who are sent to help

him. What should be done in a case like this-when

a cognitively impaired person refuses to implement

his or her own decision?

Several commentators have pointed out that some

people who are capable of making a decision are not

necessarily capable of implementing it (i.e., they

have decisional autonomy but not executional autonomy), and that such people need assistance in

implementing their decisions (139,179,384). The

application of that principle is clear with respect to

people who are physically unable to implement their

decisions, but it is less clear in the case of a

cognitively impaired person who refuses to implement his or her own decision. Does it make sense to

conclude that such a person is decisionally capable

with respect to one decision and decisionally incapable with respect to other decisions that are needed to

implement that decision? Raising this dilemma is

not intended to dispute the validity of the concept of

decision-specific decisionmaking capacity. Rather,

it is intended to illustrate the difficulty that a case

manager or other arranger of services might encounter in seeking to apply the concept to decisions about

services for people with dementia.

Who Should Determine Decisionmaking

Capacity?

Many commentators believe that a person’s decisionmaking capacity should be determined without

court involvement whenever possible and that the

courts should be called on as a last resort only if an

irreconcilable disagreement about a person’s decisionmaking capacity arises among those who are

caring for the person (177,253,539,945). Such determinations are better made without court involvement, they say, in part because court proceedings

tend to be expensive, time-consuming, and emotionally stressful for everyone involved. In addition,

many months may pass before a court hears a case

and issues a decision, and applying the concept of

decision-specific decisionmaking capacity would be

virtually impossible if many decisions about a

person’s care had to be made over time, and a court

hearing had to be held to determine the person’s

capacity to make each decision.
Chapter 4-Questions That Arise in Making Decisions About Services ● 145

If, as a general practice, determinations of people’s decisionmaking capacity are to be made

without court involvement, some person or body

other than the courts has to make them. Some

hospitals and nursing homes have established explicit institutional policies that delineate procedures

to be followed in making decisions about the use of

life-sustaining medical treatments, and their policies

often include procedures for determining patients’

decisionmaking capacity (475,833). In addition,

some hospitals and nursing homes have an ethics

comrnittee--a multidisciplinary group established

to address ethical dilemmas that arise within the

facility and advise staff about difficult treatment

decisions. Hospital and nursing home ethics committees sometimes assist facility staff in determining

whether patients are capable of making decisions

about their medical care (833).

Agencies that arrange services for people with

dementia could establish explicit policies, not unlike

the institutional policies just mentioned, that would

delineate procedures to be followed when decisions

about services are needed for clients of questionable

decisionmaking capacity. The agency policies could

specify procedures for determiningg such individuals’ decisionmaking capacity, including instructions

about who should be involved in making the

determinations.

Some agencies that arrange services for people

with dementia might be able to adapt the model of

a hospital or nursing home ethics committee for

determining their clients’ decisionmaking capacity

(179). OTA knows of one community mental health

center in Spokane, Washington, that has established

a multidisciplinary team consisting of a psychiatrist,

a nurse, and a social worker to determine its clients’

decisionmaking capacity (689).6 Other agencies

could use a similar approach.

In judging individuals’ legal competency, courts

frequently rely on the opinions of psychiatrists and

psychologists. Some of the agencies OTA studied

that arrange services for people with dementia—

e.g., community mental health centers—have psychiatrists and psychologists as employees or consultants. These agencies might assign a psychiatrist

or psychologist the primary responsibility for determining their clients’ decisionmaking capacity.

Agencies that arrange services for people with

dementia also might assign case managers the

primary responsibility for determiningg their clients’

decisionmaking capacity. OTA has heard different

opinions about the wisdom of this approach, and

some people’s opinions depend on the educational

background, experience, and training of the case

managers who would be performing the function.

Citing the important legal rights and legal and

ethical issues involved in judgments about an

individual’s decisionmaking capacity, some people

argue that only those case managers who have

received special training in determining decisionmaking capacity--either in addition to or irrespective of their having a certain educational background

and/or experience--are qualified to determine their

clients decisionmaking capacity. Other people argue

that case managers with certain types of educational

background and experience (e.g., those with a

master’s degree in nursing or social work and some

amount of experience) are qualified to determine

their clients’ decisionmaking capacity. Still other

people argue that case managers are not qualified to

determine individuals’ decisionmaking capacity regardless of the case managers’ educational background, experience, and/or any special training they

may have received.

It is important to note in this context that in many

and perhaps most agencies that arrange services for

people with dementia, case managers are the ones

who determine their clients’ decisionmaking capacity, even though there may be no explicit agency

recognition that they are performing that function

and some of the case managers may not aware that

they are doing so. Some people might argue that the

current situation is satisfactory, although OTA has

not heard that opinion expressed (except with

respect to case managers with certain educational

background and/or experience).

The educational background and experience of

individuals who function as case managers in

agencies that arrange services for people with

dementia varies greatly, but to OTA’s knowledge,

the question of how education and experience affect

case managers’ ability to determine people’s decisionmaking capacity has not been systematically

investigated. It is reasonable to believe, though, that

whatever their background, case managers and

others who arrange services for people with demen-

~e Elderly Services Program of the Spokane Community Mental Health Center is deseribed in box 8-C in ch. 8.
146 . Confused Minds, Burdened Families: Finding Help for People With Alzheirner’s & Other Dementias

Photo credit: Eastern Area Agency on Aging, Brewer, ME

In many agencies that arrange services for people with

dementia case managers are the ones who determine their

clients’ decisionmaking capacity, even though there may

be no explicit agency recognition that they are

performing that function.

tia would benefit from training in determining

decisionmaking capacity. The form such training

should take and who should provide it are unclear,

however.

A resource center established at the University of

Minnesota in 1988 might be able to develop training

materials about determiningg decisionmaking capacity for case managers and others who arrange

services for people with dementia. This center, the

Long-Term Care Decisions Resource Center, was

established by the Federal Administration on Aging

to conduct research and to provide State units on

aging and area agencies on aging (AAAs) with

training and technical assistance related to decisionmaking in long-term care. The Minnesota center is

addressing a variety of topics related to long-term

care decisionmaking, including client assessment,

care planning, and other case management functions. In relation to its work on these topics, the

center might be able to develop training materials

about methods of determining decisionmaking capacity and about legal and ethical issues involved in

judgments about an individual’s decisionmaking

capacity. Such materials could be used to train case

managers in AAAs and then be disseminated to

other agencies.

Methods of Enhancing Decisionmaking

Capacity

Several commentators believe that physicians,

other health care and social service professionals,

hospital discharge planners, case managers, and

others have an obligation to support and enhance the

decisionmaking capacity of people with dementia

(93,177,945). They also have an obligation to make

the most of the variability in such individuals’

decisionmaking capacity to allow individuals to

make decisions for themselves to the greatest extent

possible (93,177,945).

The decisionmaking capacity of a person with

dementia is diminished first and foremost by cognitive deficits caused by the person’s dementing

disease. Since the cognitive abilities of a person with

a dementing illness typically vary from day to day

and even in the course of the same day, the person’s

decisionmaking capacity may be greater at some

times than others. To allow the person to make his

or her own decisions about services to the greatest

extent possible, physicians and other health care and

social service professionals must be available and

willing to make the most of periods of relative

lucidity (93,181).

In addition to being affected by the person’s

dementing disease, the decisionmaking capacity of

a person with a dementing disease may be diminished by a variety of other factors that are more or

less susceptible to interventions by physicians or

others who are caring for the person. Such factors

include medications, coexisting illnesses, stress, and

unfamiliar environments that exacerbate the person’s cognitive deficits, as well as sensory impairments that interfere with the person’s ability to

receive information relevant to decisions (93,414,945).

Other factors include language barriers that interfere

with communication; the lack of information about

possible living arrangements and services, the form

in which information about services is presented,

and the ways in which questions about services and

living arrangements are framed (4,179,386,798).

Eliminating or compensating for factors that adversely affect decisionmaking capacity is one way to

enhance a person’s decisionmaking capacity and

support the person’s autonomy.

Unfortunately, the decisionmaking capacity of

most individuals with dementia deteriorates over

time. Another way to enhance the decisionmaking

capacity and support the autonomy of such individuals, therefore, is by anticipating their mental deterioration and encouraging them to take advantage of

legal arrangements that allow them to document

their wishes or preferences with respect to certain

types of decisions, so these wishes and preferences
Chapter G-Questions That Arise in Making Decisions About Services ● 147

can inform future decisions by surrogate decisionmakers. Such legal arrangements include the following:

●

●

●

trust agreements, which allow individuals to

document their wishes for the management of

their financial affairs in the event that they

become decisionally incapable;

living wills, which allow individuals to document their preferences about the use of lifesustaining medical treatments in the event that

they become decisionally incapable; and

durable powers of attorney, which allow individuals to designate someone to make health

care and/or financial decisions for them (i.e., a

surrogate decisionmaker) if the individual becomes decisionally incapable.

Many commentators have noted the importance of

these legal arrangements and have emphasized that

physicians, other health care and social service

professionals, service providers, hospital discharge

planners, case managers, and others who work with

people with dementia and their families have a

responsibility to encourage the patients and their

families to have the necessary documents executed

while the person is still decisionally capable

(38,137,180,253,539,644,945).

If agencies that arrange services for people with

dementia had explicit policies and procedures for

determing their clients’ decisionmaking capacity,

they could incorporate available methods for enhancing decisionmaking capacity into their procedures. Implementing methods for enhancing decisionmaking capacity may be difficult, however,

because the methods are often time-consuming; they

do not fit easily into the time constraints of the

typical hospital discharge planning process or situations in which services must be arranged quickly

because the patient and family are in crisis by the

time they come to the attention of the case manager

(4,139,179,417,901).

The reason for enhancing individuals’ decisionmaking capacity is to allow people to make decisions for themselves to the greatest extent that they

are able. Efforts to preserve the autonomy of

individuals with dementia have to be balanced,

however, with a recognition that such individuals are

often decisionally incapable and therefore may need

protection from decisions that may be harmful to

them (119, 183,288). Designating someone to make

decisions about services for a person who is decisionally incapable is not depriving that person of

autonomy. In fact, allowing such a person to make

decisions for himself or herself may be more

correctly construed as abandonment than as supporting autonomy (41,417,547).

A full discussion of the difficult legal and ethical

considerations involved in supporting the autonomy

of a person with questionable decisionmaking capacity v. protecting the person from potentially

harmful decisions is beyond the scope of this report.7

The main point here is that those seeking to support

autonomy must balance their efforts with the recognition of realistic limits on autonomy caused by the

person’s dementing disease (41,178,546). Striking a

balance between supporting a decisionally capable

individual’s autonomy and protecting a decisionally

incapable person from potentially harmful decisions

often requires subtle judgments on the part of

whoever is determiningg the person’s decisionmaking capacity-an observation that again suggests the

need for training of the individuals who have to

make these judgments.

Implications for an Effective System To Link

People With Dementia to Services

As the preceding discussion points out, physicians, other health care and social service professionals, hospital discharge planners, case managers,

and others who are involved in arranging services for

people with dementia sometimes simply assume that

anyone with a diagnosis of a dementing disease is

decisionally incapable, without carefully evaluating

the person’s decisionmaking capacity. Furthermore,

most agencies that arrange services for people with

dementia do not have explicit policies and procedures for determining their clients’ decisionmaking

capacity. Judgments about clients’ decisionmaking

capacity in these agencies are frequently made by

case managers and others who may or may not be

knowledgeable about methods for determiningg decisionmaking capacity or about the complex legal and

ethical issues involved in such judgments. (Some of

these individuals may not even be aware that they

are making the determinations.)

Wor further discussion of these issues and considerations as they relate to decisions about serviees for people with dementi% the reader is mfemed

to the summer 1987 issue of Generations, “Coercive Placement of the Elderly: Protection or Choice?” and the June 1988 supplement to The

Gerontologist, “Autonomy in I.xmg-Term Care” (241,251).
148 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

If Congress mandated a national system to link

people with dementia to services, Congress could

require the agencies that were designated to constitute the system to have explicit policies and procedures for determiningg clients’ decisionmaking capacity. The questions that would have to be addressed by agencies in establishing such policies and

procedures include the following:

●

●

●

What criteria should be used to determine

decisionmaking capacity?

Who should be involved in determining client’s

decisionmaking capacity?

What procedures should be used to enhance

clients’ decisionmaking capacity while at the

same time protecting decisionally incapable

people from potentially harmful decisions?

None of these questions is easily answered. Some

of the possible answers discussed in the preceding

sections were developed in discussion and debate

about determining decisionmaking capacity for other

client populations and other types of decisions. More

research and analysis is needed about procedures for

determining decisionmaking capacity in people with

dementia and in the context of decisions about the

health care, long-term care, social, and other services

that may be needed for them. Trainin g about

determining decisionmaking capacity could benefit

case managers and others who arrange services for

people with dementia. Such training is especially

needed for case managers or other individuals who

have primary responsibility for determining their

clients’ decisionmaking capacity.

MAKING SURROGATE

DECISIONS ABOUT SERVICES FOR

INDIVIDUALS WITH DEMENTIA

If an individual with dementia is decisionally

incapable, decisions about services must be made for

the individual. It is important to reemphasize,

however, that making decisions for such a person is

the second step. The process of making decisions

about services should begin with a presumption that

the individual is decisionally capable. Only after that

presumption is refuted should other people make

decisions for the person (946).

When decisions are made on behalf of an individual who is decisionally incapable, someone or some

group of people is chosen as the surrogate decisionmaker, whether that choice is made explicitly or

implicitly. Furthermore, the surrogate decisions are

based on some criteria, whether those criteria are

explicit or implicit. When decisions about services

are made for an individual with dementia, the choice

of a surrogate decisionmaker and the criteria for

surrogate decisions are probably more often implicit

than explicit. Nevertheless, who is chosen as the

surrogate decisionmaker and what criteria are used

for surrogate decisions can have a profound impact

on the life of the individual with dementia.

Who Should Make Surrogate Decisions

About Services?

As mentioned earlier, people who are decisionally

capable can designate someone to make decisions on

their behalf through the legal mechanism of a

durable power of attorney. In some States, people

who are decisionally capable also can designate

someone to make decisions for them through another

legal mechanism-a living will. Very few people

have executed either a durable power of attorney or

a living will. Moreover, the types of decisions that

can be made with a durable power of attorney vary

from State to State, and it is often unclear whether or

to what extent a durable power of attorney authorizes

the designated surrogate to make decisions about the

kinds of health care, long-term care, social, and other

services that may be needed for a person with

dementia. State living will laws that allow the

designation of a surrogate decisionmaker generally

only authorize surrogate decisions about the use of

life-sustainin g medical treatments and, in some

States, only for terminally ill individuals.

If a decision about services is needed for a

decisionally incapable person with dementia and the

person has not formally designated a surrogate

decisionmaker, physicians, other health care and

social service professionals, service providers, hospital discharge planners, case managers, and others

usually turn to the person’s family (if the person has

one). Available evidence, including a 1982 Harris

poll and a more recent study, indicates that most

people want a family member to make decisions for

them if they are not able to make the decisions

themselves. The 1982 Harris poll found that 57

percent of the 1,251 people interviewed nationwide

said they wanted a family member to make important medical decisions for them if they were not

capable of doing so themselves; about one-third

wanted their doctor to make such decisions (476). In

another, more recent study, 90 percent of the 40
Chapter 4--Questions That Arise in Making Decisions About Services . 149

elderly persons interviewed said they wanted a

family member or family members to make health

care decisions for them if they were not capable of

doing so themselves; the remaining 10 percent

wanted their doctor, a lawyer, or a close friend to

make the decisions (322).

The 1982 Harris poll and the more recent study

both focused on health care decisions, and although

the majority of respondents in both studies said they

wanted family members to make surrogate decisions

for them, the next largest number of respondents said

they wanted their physician to make the decisions

(322,476). Physicians are probably perceived by

most people as more qualified to make decisions

about health care than about some of the other kinds

of services that may be needed for individuals with

dementia. No data are available, but it is likely that

if the studies had focused on decisions about social

and other nonmedical services, the preference for

family members as surrogate decisionmakers would

have been even stronger.

Despite the fact that most people prefer to have

family members make decisions for them if they

become decisionally incapable, many States provide

no legal authority for family members to make the

decisions unless the family member is designated as

a surrogate decisionmaker by a durable power of

attorney or a living will, as just described (36,531,945).

As of April 1987, only 15 States had “family

consent laws” (i.e., statutes that authorize family

members to make decisions for relatives who are

decisionally incapable), although courts in 5 additional States had ruled that family members could

make such decisions (539,540). These family consent laws and court rulings generally only apply to

certain types of patients and certain types of

decisions. The laws and court rulings in some States

authorize families to make decisions for a decisionally incapable relative only if a physician has

certified that the person is terminally ill (540). Many

existing family consent laws and court rulings only

address decisions about life-sustaining medical treatments, and it is not clear whether they apply to

decisions about the other kinds of health care,

long-term care, social, and other services that maybe

needed for people with dementia.

In States that do not have family consent laws, the

legal rights and responsibilities of family members

and others in making decisions for decisionally

Photo credit:Maria P. Cordero-Aranda

Most people want family members to make decisions for

them if they are not capable of making the decisions

themselves.

incapable people are unclear. In these States and in

many of the States that already have family consent

laws, legislation is needed to clearly delineate the

extent of, and limitations on, the decisionmaking

authority that is granted to family members and

others, including any limitations on the types of

decisions that the law authorizes them to make. The

designation of surrogate decisionmakers, including

family members, for decisionally incapable people

with dementia will continue even in the absence of

such legislation, but State statutes that clearly define

the rights and responsibilities of family members

and others in making decisions for decisionally

incapable people and also delineate the types of

decisions that a designated surrogate is and is not

authorized to make would create a firm legal basis

for determining who should make decisions about

services for decisionally incapable people with

dementia.

Several problems complicate the practice of using

family members as surrogate decisionmakers. One is

that a person’s relatives may disagree about which

one(s) should make the necessary decisions. Such

disagreements may arise between the demented

person’s adult children, between adult children and

the spouse, or between siblings and other relatives

who have been involved in caring for the person

(85,137,186,514,670,936). Some States’ family consent laws address this problem by specifying the

order in which certain family members (e.g., the

spouse and the adult children) are authorized to

make surrogate decisions (539). OTA has not

analyzed the pros and cons of this approach.
150 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Some of the other problems that complicate the

practice of using family members as surrogate

decisionmakers probably would persist even if all

States had clear, comprehensive statutes on designating surrogate decisionmakers. One such problem,

as discussed in chapter 3, is that some family

members are not comfortable making decisions for

a relative with dementia (307,487,533,669,936).

Despite their concern about their relative’s welfare

and knowledge about his or her wishes, some family

members are reluctant to take control. Such reluctance is evident in following statement of a 74-yearold woman whose husband had dementia:

My husband refuses to believe that there is

anything wrong with him. Sometimes he does seem

to be better than others, so how do I tell him that he

needs help? (669)

A study of 15 spouses of people with dementia found

that wives were much more likely than husbands to

have difficulty making decisions for their demented

spouses (533). The researcher concluded:

The males’ assumption of authority over their

wives was. . . a natural extension of their authoritative role in the family. For the wives, assuming an

authority position over another adult, especially a

man who had probably been the authority figure in

the marriage, was one of the hardest aspects of the

caregiving role (533).

Another problem that complicates the practice of

using family members as surrogate decisionmakers

is that some families are not appropriate surrogate

decisionmakers. The practice of turning to a person’s family for surrogate decisions assumes that

family members are more likely than other people to

know the patient’s values and preferences and to be

concerned about his or her interests. That assumption is valid in many cases, and perhaps most, but

certainly not in all (93,945). Furthermore, even

family members who know a patient’s values and

preferences and are concerned about the patient’s

interests, do not always make decisions on the basis

of those values, preferences, and interests.

It is sometimes assumed that the only thing a case

manager has to do with respect to designating a

surrogate decisionmaker for a person with dementia

who has a family is to note the name and telephone

number of one or more family members in the

person’s medical record or care plan. Sometimes,

however, problems arise-e.g., the person’s relatives disagree about who should be the surrogate

decisionmaker, or the obvious surrogate is either

reluctant to make decisions for the person or

unconcerned about the person’s well-being-that

make designating a surrogate a more difficult task.

Such problems suggest a need for agency policies

and procedures for designating surrogate decisionmakers (written to comply with existing State laws

if there are relevant laws) and training for case

managers and others who are involved in selecting

surrogate decisionmakers.

Designating a surrogate decisionmaker for a

person with dementia who has no family is likely to

be even more difficult than doing so for a person who

has a family. One unresolved issue is the appropriate

role of nonfamily caregivers in making decisions

about services for decisionally incapable people

with dementia. That issue was brought to OTA’s

attention by the findings of an exploratory study

conducted for OTA in Los Angeles and San Diego

Counties, California in 1988 and 1989 (866). One

component of the study was interviews with 88

ethnic minority caregivers of ethnic minority people

with dementia. The 88 caregivers included 35 black,

25 Hispanic, 18 Japanese, and 10 American Indian

caregivers. 8 The study found that 17 percent of the

caregivers were friends or neighbors of the person

they were caring for, i.e., not family members, and

34 percent of the black caregivers were not family

members.

OTA’S contractors, the individuals who interviewed the black caregivers, and others have pointed

out that in many black communities, long-time

friends and neighbors are frequently regarded and

spoken about as if they were family members

(247,866). When it comes to making decisions about

services for a decisionally incapable person, however, these “fictive kin” are in the same or perhaps

an even more uncertain position legally than family

caregivers in States that do not have family consent

laws. Although a nonfamily caregiver may know

more than anyone else about the wishes and values

of the person he or she is caring for—and therefore

be the best surrogate decisionmaker for that person—

there is no legal authority for the nonfamily caregiver to make the necessary decisions.

8AII of tie components of tie study conducted for O’Ill in California are described in app. A. A complete report on the study is avfible from tie

National Technical Information Service in Springfield, VA.
Chapter 4--Questions That Arise in Making Decisions About Services . 151

The study conducted for OTA in Los Angeles and

San Diego Counties found that the percentage of

nonfamily caregivers was higher among the black

caregivers than among the Hispanic, Japanese, and

American Indian caregivers (866). These findings

cannot be generalized with any certainty because of

the small size of the samples and the way the

samples were recruited. OTA’s contractors believe,

however, that there is probably a higher percentage

of nonfamily caregivers of people with dementia in

the black population than in the Hispanic, Japanese,

or American Indian populations in the areas studied

(865). On the other hand, anecdotal evidence suggests and OTA’s contractors believe that the phenomenon of nonfamily caregivers of people with

dementia exists in all population groups, including

the majority white population. It is likely, therefore,

that agencies, case managers, and others that arrange

services for people with dementia routinely encounter dementia patients who have nonfamily caregivers. Although the appropriate role of these

caregivers in decisions about services for the patients is unclear, it is clear that unless the caregivers

are involved in the decisionmaking process in some

way, decisions about services for the patients they

are caring for will be made without the benefit of

their knowledge of the patients’ wishes and values.

For individuals with dementia who have no

family member or other person to make decisions

about services for them and for individuals whose

family or nonfamily caregiver is not an appropriate

surrogate for any reason, one option would seem to

be guardianship--in which a court appoints someone to manage money and make decisions for an

individual who has been declared legally incompetent (the ward).9 Many commentators regard guardianship as a last resort, however, because it usually

entails the drastic deprivation of rights for the ward;

because, as discussed earlier, court proceedings are

often expensive, time-consuming, and emotionally

stressful for everyone involved (177,253,361,945);

and because guardianship does not necessarily result

in the designation of a reliable surrogate decisionmaker.

A fulll discussion of the many problems with

guardianship in this country is beyond the scope of

this report. It is sufficient to note some of the

findings of a study conducted by the Associated

Press in all 50 States in 1986 and 1987, in which

judges, guardians, and others were interviewed and

the court files of more than 2,200 individuals who

had been declared legally incompetent and assigned

a guardian were reviewed (1 1). That study found that

in one-fourth of the cases, no hearing was held to

determine whether the person was incompetent. In

many cases, once guardianship was established, the

court lost track of the paperwork, the guardian, and

the ward. Although there are reporting and accounting requirements for court-appointed guardians in all

50 States, the required annual or periodic accountings of the ward’s money were missing or incomplete in half the files. Only 16 percent of the files had

any kind of report on the status of the ward, and 13

percent of the files were empty except for the

original decision that the individual was incompetent and the granting of guardianship powers. One

judge interviewed by the Associated Press said:

I don’t know where the wards are, who’s caring

for them, or what they’re doing. I have no support

staff; I have no welfare workers; I have no aides; I

have no assistants; and I have no money (11).

In 1983, Montefiore Hospital in New York added

a lawyer to its multidisciplinary geriatric team to

resolve legal problems that prevented effective

hospital discharge planning for or appropriate placement of elderly patients with diminished cognitive

abilities (181). For some patients, the lawyer initiated legal proceedings in order to have a guardian

appointed to manage the patient’s money so that

needed services could be purchased. After several

protracted and generally unsatisfactory experiences

with the guardianship process, the lawyer concluded

that guardianship was an inadequate method of

designating a surrogate decisionmaker for the purpose of hospital discharge planning (179). Another

lawyer connected to the project described the

guardianship process as ‘‘a nonexistent alternative’

with respect to hospital discharge planning (946).

The guardians appointed by the court generally were

untrained and unsupervised. Moreover, in at least

two cases in which a guardian was appointed after a

lengthy court process, the person appointed did not

even contact the patient or patient’s caregivers for

months after the court decision (181).

gsome Stites we tie tem‘~~n” and “guardianship,” other States use the terms “conservator” and “conservatorShip,” and some states use

both terms to refer to thecourt-appointedperson and the mechanism(s) by which thatpersonis appointed to manage the assets and/ormake other decisions

on behalf of people who are determined to be decisionally incapable (539). In the following discussio~ the terms “guardian” and “guardianship” are

intended to include both sets of terms.
152 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

The American Bar Association has recommended

reforms in the guardianship process, and the Center

for Social Gerontology in Ann Arbor, Michigan, has

developed standards for individuals and agencies

that function as guardians for decisionally incapable

adults (738). Various other organizations have

developed alternatives to guardianship for decisionally incapable people who have no family member

or other surrogate decisionmaker.

The University of New Mexico’s Institute of

Public Law, for example, recently trained 20 volunteers (social workers, lawyers, nurses, and others) to

act as “temporary treatment guardians” to make

decisions about medical treatment for hospitalized

elderly people who are decisionally incapable and

have no other surrogate decisionmaker (802). The

volunteers underwent a 16-hour training program

that involved didactic presentations, case discussions, and role playing. In the course of the l-year

project, the volunteers assisted a total of 50 elderly

people. As it turned out, the temporary treatment

guardians discovered that some of the elderly people

they were called in to assist were decisionally

capable after all and that other clients had family

members or close friends who could be located with

a little ‘‘sleuthing” and were able to make decisions

for the person.

Since 1985, New York State has had a program

whereby volunteer surrogate decisionmaking committees make decisions about medical treatments for

mentally ill and mentally retarded people who have

no other surrogate decisionmaker (777). The committees are composed of at least 12 members who

meet in 4-member panels to consider treatment

decisions. Each 4-member panel must include a

health care professional, a former patient or relative

of a patient, a lawyer, and an advocate for the

mentally disabled. For each mentally ill or retarded

individual, the 4-member panel determines, frost,

whether the person is decisionally capable and,

second, whether there is a family member or a

legally appointed guardian who can make the

necessary treatment decision. If the answers to both

questions are no, the panel makes the treatment

decision. In the first year of the program, surrogate

decisions about treatment were made in 192 cases.

The decisions were made in an average of 14 days

from the time the committees received the application-much less time than is required for the typical

guardianship proceeding. Some observers feared

that it would be difficult to recruit professionals to

serve on the committees, but recruiting volunteers

has not been a problem except in some rural areas of

the State.

Both the University of New Mexico program and

the New York State program provide only a onetime or temporary surrogate decisionmaker and

address only decisions about medical treatment.

Other guardianship diversion programs provide

money management and counseling services for

decisionally incapable people, sometimes on a

long-term basis (900). All of these programs exemplify methods other than guardianship by which

surrogate decisionmakers can be provided for people

who are decisionally incapable and have no family

member or other surrogate to made decisions for

them. To make surrogate decisions for these people,

agencies that arrange services for people with

dementia could create their own surrogate decisionmaking committee, recruit and train volunteer surrogate decisionmakers, or affiliate themselves with a

program that provides surrogate decisionmakers (if

such a program is available in the agency’s area).

What Criteria Should Guide Surrogate

Decisions About Services?

Court rulings and legal analysis of decisions about

the use of life-sustaining medical treatments made

on behalf of people who are decisionally incapable

have identified two standards to guide surrogate

decisionmaking:

● the best interest standard, and

. the substituted judgment standard.

The best interest standard requires the surrogate to

make decisions from the perspective of a hypothetical reasonable person, using objective, societally

shared criteria (945). The substituted judgment

standard requires the surrogate to make decisions

from the perspective of the patient, using the

patient’s personal values and preferences (945).

The best interest and substituted judgment standards, respectively, represent two fundamental values in surrogate decisionmaking-patient autonomy

and patient well-being (671). The tension between

those two values is as central to surrogate decisions

about services for people with dementia as it is to

surrogate decisions about the use of life-sustaining

medical treatments for people who are permanently

unconscious or terminally ill. In the context of

surrogate decisions about services for people with
Chapter 4--Questions That Arise in Making Decisions About Services . 153

dementia, patient well-being as a value is manifested

in decisions by physicians, service providers, case

managers, or an individual’s friends or family that

the individual should receive certain services or live

in a certain place “for his or her own good,”

regardless of the individual’s wishes. Patient autonomy as a value is manifested in surrogate decisions

that an individual with dementia should be allowed

to refuse services and live as he or she chooses, even

if there is risk associated with those choices. The

latter perspective also is reflected in efforts to

enhance an individual’s decisionmaking capacity, as

discussed earlier, and to support the “residual

autonomy” of the individual (177).

Some people generally favor surrogate decisions

based on patient well-being, whereas others generally favor surrogate decisions based on patient

autonomy. Clearly, however, neither value by itself

is sufficient for every decision or for every patient.

The process of making surrogate decisions about

services for people with dementia probably should

retain a tension between the two values, but retaining

that tension means that in many cases the “right”

decision will not be obvious.

When case managers, hospital discharge planners,

and others who arrange services for people with

dementia make or influence decisions about services, those decisions are likely to reflect their

preference for one value or the other, either in

general or in the particular situation. Yet some of

those individuals may not be aware of the values

involved in such decisions or the implications for the

patient of decisions that favor one value over the

other.

The relationship between patient well-being and

autonomy has been discussed and debated extensively with respect to decisions for all kinds of

people who are decisionally incapable, and the

resulting ideas and principles seem both relevant to

and adequate for thinking about criteria for surrogate

decisions pertaining to the use of services for people

with dementia. In contrast, another issue-how the

needs, preferences, and best interests of the patient

and of the family should be weighed—has received

less attention in discussion and debate about decisions for all kinds of people who are decisionally

incapable, and the resulting ideas and principles are

less helpful in thinking about decisions about

services for people with dementia.

Photo credit: Bill Adams

Agencies that arrange services for people with dementia

could create a surrogate decisionmaking committee to

make decisions about services for people with dementia

who are not capable of making the decisions themselves

and have no one else to make the decisions for them.

The members of the advisory panel for this OTA

study talked at some length about the question of the

relative weight that should be given to the needs,

preferences, and best interests of the family v. the

patient in decisions about services for persons with

dementia. No consensus was reached, but several

important points emerged from the discussion. First,

it is clear that when family members are necessary

participants in a plan of care because the person with

dementia lives with them or for any other reason,

their needs and preferences must be considered in

decisions about services because their interests are at

stake in the decisions and because they may not

cooperate with the plan of care otherwise. Second, it

is sometimes very difficult in practice to separate the

needs, preferences, and best interests of the person

with dementia and of the family.

Beyond those two points, the OTA advisory panel

divided into two groups. Some panelists tended to

regard the person with dementia and family as a unit

and to consider that unit the appropriate client of the

case manager. Those panelists generally were not

especially concerned about the difficulty of separating the needs, preferences, and best interests of the

patient and those of the family; and they seemed to

regard positively the idea of using the needs,

preferences, and best interests of the family as

criteria for decisions about services. Other panelists

tended to regard the person with dementia and

family as separate; and they were worried about the

potential for conflicts of interest if the needs,

preferences, and best interests of the family, rather

than those of the patient, were used as criteria for

decisions about services.
154 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Both groups of OTA advisory panel members

were critical of case managers who represent themselves as advocates for a person with dementia but

in fact have their primary allegiance to a relative of

the person, a trust officer, or someone else who is

paying for their services. This is one of the situations

that commentators refer to with the phrase, “Who’s

the client?” The allegiance of the case manager to

the impaired person v. a family member, trust

officer, or someone else is in part a question of

professional ethics that should be addressed in case

management standards and is addressed, to some

degree, in the case management standards of the

National Association of Social Workers (572) and

the National Council on the Aging (581).

A more complex issue is the relationship between

the long-term needs, preferences, and best interests

of a person with dementia and the needs, preferences, and best interests of his or her primary

caregiver, who is usually a family member. Arguably, the long-term best interests of many people with

dementia is to remain with a family caregiver even

if the care they receive from that person is much less

than ideal. It maybe in the demented person’s best

interest to remain with the family caregiver because

the alternative to being cared for by the family

caregiver is objectively worse, is worse in the view

of the patient, or both; because the person knows the

family caregiver; or because families often provide

what one commentator has called ‘‘substituted

memory of shared happenings ’’-i.e., a knowledge

of the patient past (which a formal service provider

generally does not have) that is reassuring to the

patient and may to some degree compensate for his

or her memory loss (177).

On the other hand, there is clearly some point at

which the long-term best interests of a patient with

dementia are not served by remaining with the

family caregiver. Different observers undoubtedly

would disagree about when that point has been

reached for an individual patient.

If by basing decisions about services on the needs

and preferences of the caregiver, one can support the

caregiver and prolong the time he or she is willing

and able to continue caring for the patient, doing so

would seem to be in the patient’s long-term best

interest, even if it required disregarding the patient’s

‘‘spoken choice’ or short-term best interest. “spoken choice” here refers to a clearly articulated

preference of the person which, because of the

person’s cognitive impairment, may or may not

reflect his or her real needs, preferences, or best

interests (18 1).

Consider, for example, a situation in which a

person with dementia is placed in a nursing home for

2 weeks against his or her wishes, so that the primary

caregiver will be temporarily relieved of caregiving

tasks. Even if the placement results in short-term

worsening of the impaired person’s cognitive and

emotional status, some people would say that it is in

that person’s best interest because it serves the

person’s presumed long-term interests. Additional

situations also might be imagined in which disregarding the spoken choice and short-term best

interest of a decisionally incapable person could be

regarded as being in that person’s best interest.

The point of this discussion is not to resolve the

question of the relative weight that should be given

to the needs, preferences, and best interests of the

person with dementia v. the family in decisions

about services but simply to emphasize the complexity of the issue. Three additional considerations

further complicate the matter. First, some people

with dementia live with and are cared for by a person

who is almost as impaired as they are and who might

be legitimately regarded as a client. When there are,

in effect, two clients in the home, how should their

needs, preferences, and best interests be weighed in

decisions about services? Second, some, and perhaps many caregivers can be pressured into doing

more than they should do for their own good. Are

there limits that could or should be applied to what

a caregiver is expected, asked, or even allowed to

do? IAN@, as a patient’s condition deteriorates, is

there a point at which the interests and well-being of

the caregiver should take precedence over the

interests of the patient?

There are no simple answers to any of these

questions. Case managers and others who arrange

services for people with dementia regularly cofront

situations in which decisions must be made that

could favor the needs, preferences, and best interests

of the family over those of the patient, or vice versa.

They may be more or less aware of the issues

involved in those decisions and the implications for

the patient and family of decisions that favor the

needs, preferences, or best interests of one over the

other.

The question of the relative weight that should be

given to patients’ v. families’ needs, preferences,
Chapter 4--Questions That Arise in Making Decisions About Services ● 155

and best interests in decisions about services requires further analysis. In the meantime, it is unclear

what guidelines might be given to case managers

and others who arrange services for people with

dementia and thus regularly confront situations in

which a decision must be made. One approach

would be to create within agencies various forums

(e.g., multidisciplinary team meetings, formal case

conferences, and supervisory conferences) in which

those situations could be discussed and deliberated.

Implications for a System To Link People With

Dementia to Services

The preceding discussion points out that choosing

surrogate decisionmakers for decisionally incapable

people with dementia and determiningg what criteria

should guide surrogate decisions about services for

them involve complex legal and ethical issues and

raise many unanswered questions. State legislation

that clearly defined the rights and responsibilities of

family members and others in making decisions for

decisionally incapable people and delineated the

types of decisions that designated surrogates are and

are not authorized to make would eliminate many of

the existing problems in designating surrogate

decisionmakers. Even without such legislation, however, agencies, case managers, and others that

arrange services for people with dementia have to

turn to someone for surrogate decisions for decisionally incapable clients. Furthermore, it is likely that

regardless of the specificity of State legislation, the

designation of appropriate surrogate decisionmakers

for people with dementia will entail difficult judgments in some and perhaps many cases because of

the idiosyncrasies of each patient’s situation.

Likewise, although it is generally agreed that

patient autonomy and patient well-being are the

values that should guide surrogate decisions, the two

values often imply different decisions in the same

situation, and neither value is appropriate for every

situation. Applying the two values in decisions

about the use of services for an individual client

therefore entails difficult judgments in many cases.

Balancing the needs, preferences, and interests of an

individual with dementia and the needs, preferences,

and interests of the individual’s family also requires

difficult judgments.

The need for these difficult judgments suggests

that agencies that arrange services for people with

dementia should have explicit policies and procedures for designating surrogate decisionmakers and

making decisions about services for people with

dementia who have no surrogate decisionmaker. It is

reasonable to believe that case managers and others

who are involved in arranging services for people

with dementia would benefit from training about the

issues involved in surrogate decisionmaking. To the

extent that case managers and others who arrange

services for people with dementia actually designate

surrogate decisionmakers and/or make decisions

about services for their decisionally incapable clients, their need for such training is increased.

If Congress mandated a national system to link

people with dementia to services, Congress could

require the agencies that were designated to constitute the system to have explicit policies and procedures for designating surrogate decisionmakers (written to comply with existing State laws if there are

relevant laws) and for making surrogate decisions in

instances where the agency had to make surrogate

decisions for any reason. To formulate such policies

and procedures, the agencies that constitute the

linking system would have to address many of the

unresolved questions discussed in this chapter,

including questions about what to do when a

decisionally incapable client’s relatives disagree

about which one of them should make the necessary

decisions, how nonfamily caregivers should be

involved in decisions about services, and when

formal guardianship is needed for a client.

To support agencies’ efforts to develop policies

and procedures for designating surrogate decisionmakers and for making decisions for decisionally

incapable clients who have no surrogate, more

research and analysis pertaining to many of the

questions discussed in the preceding sections is

needed. Especially problematic is the question of

how to balance the needs, preferences, and interests

of an individual with dementia and the needs,

preferences, and interests of the individual’s family

or other informal caregiver. Perhaps it would be

useful for government, private agencies that arrange

services for people with dementia, and professional

associations that represent social workers, nurses,

and other professionals who function as case managers to jointly sponsor forums for further discussion

of this and related issues.

89-150 - 90 - 6
156 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

CONCLUSION

Questions about how to determine the decisionmaking capacity of people with dementia and how to

make surrogate decisions about services for people

who lack the capacity to make such decisions

themselves are inherent in the process of arranging

services for people with dementia. The way such

questions are answered involves fundamental legal

rights of the patient and raises complex legal and

ethical issues. Those rights and issues are at stake

regardless of whether the individuals who make or

participate in the decisions are aware of them.

In many agencies that arrange services for people

with dementia, questions about the methods used to

evaluate clients’ decisionmaking capacity and to

make surrogate decisions about services for clients

who cannot make such decisions themselves are

obscured by other problems and concerns and by the

severe constraints on the time within which decisions about services must be made. In such agencies,

concerns about clients’ legal rights, and about the

legal and ethical issues involved in the way decisions about services are made for people with

diminished decisionmaking capacity seem to be

second-level concerns to be considered when other

problems have been solved.

This chapter has suggested that if Congress

mandated a national system to link people with

dementia to services, Congress could require that

any agency that is part of the system have explicit

policies that delineate the procedures to be followed

when decisions about services are needed for clients

with diminished decisionmaking capacity. Policies

that specify procedures for determiningg a client’s

decisionmaking capacity and/or assign responsibility for determiningg a client’s decisionmaking capacity to a person or group of people could help increase

the likelihood that clients’ rights and the legal and

ethical issues involved in decisionmaking are adequately considered.

The chapter has discussed some concepts, distinctions, and approaches that may be useful in developing such agency policies and procedures and in

training case managers and others who are involved

in arranging services for people with dementia. As

noted repeatedly, many of the concepts, distinctions,

and approaches that have been discussed were

derived from analysis and debate about the use of

life-sustaining medical treatments or participation in

research, not the kinds of decisions that are the topic

of this OTA report. Furthermore, some of the

concepts, distinctions, and approaches discussed in

the chapter apply more to decisionmaking by and for

mentally ill and terminally ill people than to

decisionmaking by and for people with dementia. To

address the difficult questions and issues that are

likely to arise in situations involving decisions about

the many kinds of services to which an effective

linking system could link people with dementia,

further research, discussion, analysis, and debate is

needed.
Chapter 5

Concerns About the Quality and

Appropriateness of Services
CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159

FAMILY CAREGIVERS’ CONCERNS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 160

CONCEPTUAL AND PRACTICAL DIFFICULTIES IN

EVALUATING SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161

Defining and Measuring the Quality of Services for People With Dementia . . . . . . . . 163

What Role Should Patients and Families Play in Defining Quality and

Specifying Goals and Methods of Care? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165

LIMITATIONS OF POSSIBLE SOURCES OF INFORMATION . . . . . . . . . . . . . . . . . . 167

Relatives, Friends, and Acquaintances Who Have Used a Service . . . . . . . . . . . . . . . . . 168

Physicians, Nurses, Social Workers, and Other Health Care and

Social Service Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ● . . . . . . . . . . . . . . 168

Professional and Provider Associations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170

The Alzheimer’s Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170

Caregiver Support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171

“Dementia Experts” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .171

Agencies That Provide Telephone Information and Referrals . . . . . . . . . . . . . . . . . . . . . 175

Hospital Discharge Planners and Case Managers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176

State Long-Term Care Ombudsmen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178

Aging Network Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

Other State and Local Government Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

Government Regulatory Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179

Voluntary Accreditation Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 182

Internal Quality Assurance Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 182

Other Possible Sources of Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 182

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .183

LIMITATIONS ON CAREGIVERS’ ABILITY TO OBTAIN INFORMATION . . . . . 183

APPROACHES FOR DEVELOPING CRITERIA TO EVALUATE

THE QUALITY OF SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 186

What Criteria Might Be Used? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 187

Who Should Develop the Criteria and Who Could Use Them? . . . . . . . . . . . . . . . . . . . . 189

AGENCY PROCEDURES FOR MONITORING & CONTROLLING

THE QUALITY OF SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 190

Procedures for Involving Patients and Families in Monitoring and Controlling

the Quality of Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194

What Role Can Case Managers Play in Monitoring and Controlling Quality?

CONCLUSION

. . . . . . 196

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197

Box

Page

5-A. “Special Care Units” for People With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163

Figures

Page

5-1. List of Questions for Evaluating an Adult Day Care Center,

Distributed by the Cleveland Alzheimer’s Association Chapter . . . 4 ., *, .,....... 174

5-2. List of Questions for Families Trying To Select a Nursing Home . . . . . . . . . . . . . . . 184

5-3. The Ohio PASSPORT Program’s Standards for Homemaker Services . . . . . . . . . . . 192

5-4. Questions Used To Evaluate Client Satisfaction in Tulsa, Oklahoma . . . . . . . . . . . . 193

5-5. Checklist Given to Clients in Ohio’s PASSPORT Program . . . . . . . . . . . . . . . . . . . . . 195
Chapter 5

Concerns About the Quality and Appropriateness of Services

INTRODUCTION

The quality of all kinds of health care, long-term

care, social, and other services that may be needed

for people with dementia varies greatly from one

agency and individual service provider to another.1

Numerous reports document the poor quality of care

provided by some nursing homes (563,759,813,835),

board and care facilities (66,166,775,816), and to a

lesser extent home care agencies (821,305,852). At

the same time, these reports indicate that other

nursing homes, board and care facilities, and home

care agencies provide excellent care. Differences in

quality are typical not only of these types of services,

but of all kinds of services that may be needed for

people with dementia.

In addition to differences in quality, there are

differences in services provided by various agencies

and individuals that make the services more or less

consistent with the needs of people with dementia.

In communities that have more than one nursing

home, home care agency, adult day center, physician, lawyer, or any other type of agency or

individual service provider, the services offered by

one agency or individual may be much more

appropriate for people with dementia than the

services offered by another agency or individual.

All people who need health care, long-term care,

social, or other services are at risk of poor quality or

inappropriate care, but people with dementia are

particularly vulnerable. Because of their cognitive

deficits, they may be unable to identify or articulate

their care needs, to evaluate the services they

receive, to remember and report instances of poor

care, or to be believed. Realizing that people with

dementia are so vulnerable, families and other

informal caregivers are often extremely concerned

about the quality and appropriateness of services

they may use for these people.

This chapter focuses on the potential role a

federally mandated linking system might play with

respect to the quality and appropriateness of services

to which it connects people with dementia. The

quality of a service is defined here as the extent to

which the service increases the probability of

desired outcomes and reduces the probability of

undesired outcomes, given the constraints of existing knowledge.2 The appropriateness of a service

denotes the aspects of a service that make it consistent with the needs of people with dementia.

In theory, a federally mandated linking system

could take any of several different approaches with

respect to the quality and appropriateness of services

to which it connects people with dementia.

●

●

●

●

●

The linking system could not concern itself

with the quality and appropriateness of the

services; it could provide no information about

the quality and appropriateness of services and

rely on families and others who are concerned

about quality and appropriateness to obtain for

themselves any information they need to evaluate the services.

The linking system could refer families and

others to specific sources of information about

the quality and appropriateness of services.

The linking system could provide families and

others with information about the quality and

appropriateness of the services.

The linking system could refer people to or

arrange for them only services that met specified standards of quality and appropriateness.

(In the case of a linking system that also pays

for services, this alternative would mean that

the system would only pay for services that met

the specified standards.)

If the linking system provides services, it could

assure the quality and appropriateness of those

services directly.

In practice, three problems would make it difficult

to implement these approaches or would limit their

potential effectiveness. First, several of the approaches assume that there are accepted criteria for

evaluating the quality and appropriateness of services for people with dementia. In fact, as discussed

in this chapter, there is currently no consensus about

criteria for evaluating the quality and appropriateness of services for people with dementia.

lsee ~ble 1.2 in c~pter 1 for a list of services that may be needed for people with dementi.

% definition of quality was also used by OTA in its 1988 assessment The Quality of Medical Care: Znformutionfor Cmsummr (832).

–159–
160 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Second, several of the approaches assume that

accurate information about the quality and appropriateness of services for people with dementia is

available from various sources. Although one hears

many recommendations about possible sources of

such information, the analysis in this chapter indicates that accurate information about quality and

appropriateness is not consistently available from

any of the recommended sources.

Third, several of the approaches assume that

families and other informal caregivers are able to

gather information about the quality and appropriateness of services from one or more sources or to

use lists of questions and criteria to evaluate services

themselves-in short, that families and others are

able to function as “informed consumers” in

evaluating the quality and appropriateness of services. Although some families and other informal

caregivers of people with dementia are certainly able

to function as “informed consumers” in this context, others are not for a variety of reasons described

in the chapter.

Probably the most important step that could be

taken to enable a federally mandated linking system

to connect people with dementia to the best available

services would be the development of criteria to

evaluate services. Certainly, if a federally mandated

linking system were going to refer people to or

arrange for them only services that met certain

standards, the standards would have to be based on

accepted criteria. If such criteria were available,

some families could use the criteria to evaluate

services themselves. Other agencies and organizations could also use the criteria to evaluate services,

thus making accurate information about the quality

and appropriateness of services available from these

sources. The development of criteria for evaluating

the quality and appropriateness of services for

people with dementia is not the function of a linking

system, but ways in which the necessary criteria

might be developed and some criteria that might be

considered are discussed later in this chapter.

The chapter focuses primarily on quality assessment (i.e., the measurement and evaluation of

quality) rather than on quality assurance (i.e.,

procedures and activities to safeguard and improve

quality by assessing quality and taking action to

correct any problems found). The focus on quality

assessment reflects the perspective of families and

others who are trying to identify good services for a

person with dementia, but who usually are not

involved in assuring the quality and appropriateness

of services.

Some agencies that link people to services also

provide services and therefore can assure (i.e., assess

and correct problems in) the quality of those services

directly. Other agencies that link people to services

contract for some of the services, and some of those

agencies have procedures for monitoring and controlling the quality of contracted services. The last

section of this chapter describes some of those

agencies’ procedures for monitoring and controlling

quality, including procedures that involve patients

and families in monitoring and controlling the

quality of the services they receive.

Quality of care and methods of assessing and

assuring quality are currently a concern of Congress

and the topic of many publicly and privately funded

research projects. Interest in quality of care has

increased because of widespread concern that costcontainment measures introduced in the past few

years may be reducing quality of care (111,831,925).

Attention has focused primarily on the quality of

hospital and nursing home care, but the focus is

expanding now to include in-home and other noninstitutional services (206,216,471,658). In considering the potential role of a federally mandated linking

system with respect to the quality and appropriateness of services to which it links people with

dementia, this chapter is discussing all types of

services that may be needed for these people.

FAMILY CAREGIVERS CONCERNS

Numerous studies and anecdotal reports emphasize the strong commitment of many family caregivers to their relative with dementia. With this

commitment comes a deep concern about the quality

and appropriateness of any services provided for the

person. According to one Office of Technology

Assessment (OTA) contractor who studied 500

family caregivers of people with dementia:

What was most impressive from (the) caregiver

studies was the emotional investment that caregivers

have in their responsibilities. This emotional tone

may be reflected in rage at unsympathetic agencies

or professionals, fear, grief, advocacy, resignation,

humor, but most of all love for and commitment to

an impaired older person. With such a strong personal investment, these family caregivers were

predictably critical consumers of services and programs in their behalf (291).
Chapter S-Concerns About the Quality and Appropriateness of Services . 161

A 1986 survey of family caregivers conducted for

OTA found that family caregivers were indeed

‘‘critical consumers” who were concerned about the

quality and appropriateness of services available to

their relatives and other people with dementia (926).

Other studies report similar findings (145,412).

Many of the State task forces and committees that

have studied the problem of Alzheimer’s disease and

related disorders also note families’ grave concerns

about the quality and appropriateness of services

(99,143,246,360,396,408,531,541,598,621,870,920).

Some family caregivers are fearful about using

services for a person with dementia because they

believe that the quality of care provided will be poor

and that the service providers will not know how to

take care of a person with dementia (88,145,291,

396,599). Some family caregivers feel-often realistically-that no one will take as good care of their

demented relative as they do. Some fear that their

demented relative’s inability to express needs or

report inadequate care will cause service providers

to neglect the person. Others fear that their demented

relative’s troublesome behavior or psychiatric symptoms will cause that person to be physically or

verbally abused. Some families are apprehensive

about using in-home services for a relative with

dementia because they are afraid that the workers

will be poorly trained and unreliable. Families who

have had problems with one service provider may be

afraid to try another one.

Some health care and social service professionals,

case managers, government planners, policy analysts, and others seem to regard concerns about the

quality of services as secondary to the problem of

insufficient availability of services. A number of the

people whom OTA asked about evaluating the

quality and appropriateness of services for people

with dementia responded that there is often no

choice about services. In many localities, they said,

families are lucky if there are any services available--

let alone services that are appropriate for a person

with dementia and of high quality.

The concern about insufficient availability of

services is legitimate. The important point to be

made here, however, is that even when services are

available, there are some situations in which families’ concerns about the quality and appropriateness

of the services are the determiningg factor in their

decisions about whether or not to use the services.

Some families may choose not to use an available

service because they believe that the service is inappropriate for the patient or of poor quality. Likewise, some families who have been reluctant to

accept help may decide to use a service if they believe it is appropriate for the patient and of good

quality.

OTA does not know how often either of the

situations just mentioned occur or whether the

frequency of their occurrence varies for different

types of services. That there are situations, however,

in which considerations of quality and appropriateness are the determining factor in families’ decisions

about service use suggests that although some health

care and social service professionals, case managers,

government planners, policy analysts, and others

may regard concerns about the quality and appropriateness of services as secondary to the problem of

insufficient availability of services, the families of

people with dementia may not always agree. In the

view of at least some families in some situations,

services that are available but of poor quality or

inappropriate for the patient may just as well not

exist.3

CONCEPTUAL AND PRACTICAL

DIFFICULTIES IN EVALUATING

SERVICES

Many people think they know quality when they

see it, but they have difficulty defining its components precisely. This predicament is described in a

frequently cited passage from Zen and the Art of

Motorcycle Maintenance:

Quality you know what it is, yet you don’t know

what it is. But that’s self-contradictory. But some

things are better than others, that is, they have more

quality. But when you try to say what quality is apart

from the things that have it, it all goes poofl There’s

nothing to talk about. But if you can’t say what

Quality is, how do you know what it is, or how do

you know it even exists? (663).

Sclmly, considerations of quality and appropfiteness do not always play a critical role in family caregivers’ decisions about tie U* of avtible

services for an individual with dementia. Some caregivers are so severely burdened that they may have to use any available service, regardless of its

quality and appropriateness. Other families, even severely burdened ones, may choose not to use an available sesvice even though the service is of high

Wty ad Wpropfite. For a disc~sion of some of tie reasons why families and other caregivers of people with dementia may be reluctant to use

available services, see ch. 3.
162 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Photo credit: Peter Carroll

Because of their strong commitment to their relative with

dementia families are often deeply concerned about the

quality and appropriateness of any services they may use

for the person.

People’s judgments about quality are often impressionistic. With respect to services for people

with dementia, someone might observe something

about an agency and decide the agency’s services are

good or not good without thinking about how he or

she reached that conclusion. Likewise, someone

might hear from a friend, the family physician, or

another source that a certain provider is good or not

good and accept that judgment as true without

questioning its basis.

Impressionistic judgments about quality may be

correct, but quality is not necessarily obvious or easy

to judge, and people sometimes differ in their

impressions about the quality of a particular service.

For judgments about quality to be more than

impressionistic, they must be based on criteria that

are derived from specified goals or desired outcomes

of care and from methods of care that are known to

achieve those goals or outcomes (174,385,737,832,

925). At present, however, there is no consensus

about the goals or desired outcomes of care for

people with dementia, and the efficacy of many

methods of care has not been proven (482,510,675).

The lack of a consensus about the goals of some

services for people with dementia and the lack of

proven methods to achieve those goals is not

surprising. Although a few agencies and individuals

have focused on providing appropriate services for

people with dementia for many years, most health

care and social service professionals and other

providers have only begun to think about the service

needs of people with dementia in the past few years,

if at all. Moreover, many treatment methods and

service interventions that are used routinely for

people with other diseases and conditions have not

been evaluated rigorously and are simply assumed to

be effective (31,832). Services for people with

dementia are not unique in this respect.

A major factor that complicates the development

of valid criteria to evaluate the quality of services for

people with dementia is the current uncertainty

about what distinguishes appropriate services for

these individuals from appropriate services for

people with other diseases and conditions. 4 Many

service providers who work with people who have

dementia believe that such people have special

service needs. The difficulty arises in determining

exactly what is or should be different about service

goals and methods of care for this patient population.

Over the past decade, as awareness of Alzheimer’s disease and other diseases that cause

dementia has increased, nursing homes, board and

care facilities, adult day care centers, and home care

agencies have developed some services specifically

for people with dementia. Anecdotal evidence indicates that these ‘‘special” services vary considerably. To a great degree, this variation reflects the lack

of agreement about goals and methods of care for

people with dementia. Box 5-A discusses the

variation among special nursing home units for

people with dementia, often referred to as “special

care units,’ and points out the difficulty families and

others may have in evaluating a special care unit and

in determiningg, for example, whether a given special

care unit will provide more appropriate care than a

regular nursing home unit for an individual with

dementia.

Knowledge about what constitutes appropriate

care for people with dementia is constantly evolving,

and, in fact, special care units and other specialized

services for people with dementia provide ideal

A~e vazidi~ of cfitefi to ev~uate quali~ refers to the extent to which the criteria measure what they PWPOrt to mwure (832).
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 163

BOX 5-A—"Special Care Units” for People With Dementia

Over the past decade, some nursing homes have established “special care units” for people with dementia.

One might assume that, by definition, these units would provide appropriate care for people with dementia. Many

special care units do provide appropriate care, but anecdotal evidence suggests that some special care units do not

provide appropriate care (144,317,321,404,425,482,83 1). It is said that some nursing homes use the words “special

care’ as a marketing tool and actually provide no special services for people with dementia. It is also said that some

nursing homes with special care units are misinformed about what is appropriate care for people with dementia.

One study of special care units for people with dementia found that the units differed greatly in their goals and

methods of care (624). According to the researchers:

These differences are of such significance that they appear to place special units in direct opposition to each other.

Nonetheless, without exception, their proponents have hailed the success of the units (624).

It is easy to understand why families and others who are trying to locate a nursing home for a person with

dementia could be confused about special care units. They need a way to evaluate special care units and to compare

the units with nursing home units that do not claim to provide special care. Otherwise, some families may

unwittingly select a special care unit that provides inferior care or is inconveniently located, when a

nondementia-specific nursing home is nearby and provides as good or better care. In this context, the director of

a regional Alzheimer’s center has told OTA that she knows families who feel guilty about not having placed their

relative with dementia in a nursing home with a special care unit, even though the nursing home they chose is nearer

to their home and provides excellent care, whereas the nursing home with the special care unit is too far from their

home to allow them to visit their relative frequently (55).

Determining whether a given special care unit provides appropriate care for people with dementia would

require an answer to the question, “What is appropriate care for people with dementia?” Although there is no

consensus about the answer yet, two recently published documents may be helpful to families and others who are

trying to evaluate special cam units. One is an Alzheimer’s Association handbook for caregivers on selecting a

special a unit (486). The other is a report on “best practices‘‘ in special care units produced by the American

Association of Homes for the Aging (60).

These two documents and other publications about special care units provide insight into the components of

appropriate nursing home care for people with dementia. Some components of care mentioned in these publications

are specific to people with dementia (e.g., the need for staff training in the usual symptoms of dementia and in

effective responses to behavioral problems that occur often in this patient population). Other components are not

specific to people with dementia and would benefit people with other diseases and conditions as well (e.g., adequate

staff-to-patient ratios, avoidance of overmedication, and individualization of care). Greater understanding of what

distinguishes appropriate nursing home care for people with dementia v. people with other diseases and conditions

is needed to develop valid criteria to evaluate special care units.

SOURCE: Office of Technology Assessment, 1990.

settings for research on alternate methods of care. could be used to develop criteria for evaluating the

Nevertheless, the development of criteria to assess

quality cannot await final, indisputable evidence

about effective methods of care or a consensus about

the goals of care for these people. As is true of

criteria to evaluate the quality of treatment methods

and services for people with other diseases and

conditions, criteria to evaluate the quality of services

for people with dementia must be developed on the

basis of the best available information from research

and provider experience, leaving open the option to

change the criteria as new knowledge develops.

The following section presents some of the ideas

and issues involved in defining and measuring

quality. It provides a conceptual framework that

quality of services for people with dementia.-T h e

subsequent section discusses the potential role of

patients and families in defining quality and specifying goals and methods of care.

Defining and Measuring the Quality of

Services for People With Dementia

Quality has been defined and its components

identified to a greater extent for hospital care, acute

medical care, and nursing home care than for home

care or social services. It is generally agreed,

however, that quality is multidimensional for all

these types of services and for all kinds of people

who use the services (173,385,83 1,832). The quality
164 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

of services for people with chronic physical or

cognitive impairments has been defined within the

dimensions of the person’s physical and mental

health, functional ability, safety, emotional and

social well-being, autonomy, and quality of life

(385,563,831). Other dimensions in which quality

might be defined are caregivers’ well-being and the

financial security of the person and his or her family.

To evaluate the quality of a service in other than

an impressionistic reamer, it is necessary to identify

goals or desired outcomes of care within each of

those dimensions and to identify methods of care

that lead to the specified goals or outcomes. The

criteria that are used to measure quality must be

derived from the specified goals and methods

(174,385,737,832,925).

Specifying Goals of Care

Patients, families, service providers, and others

have different goals in the care of people with

dementia. The differences reflect their varying

backgrounds, values, experiences, and knowledge,

their current responsibilities, and their perceptions

of the patient’s condition. Some people emphasize

the importance of maintaining the patient’s physical

health and safety. Others emphasize autonomy,

freedom from fear, or reduced anxiety and agitation.

Achieving the best possible quality of life for the

patient is probably the overriding goal in the view of

many families and some service providers, but the

meaning of ‘quality of life’ in this context is highly

idiosyncratic (735).

Different goals imply different methods of care

and different criteria to evaluate quality. Sometimes

legitimate goals of care conflict (385,735). For

example, a person with dementia may enjoy walking

unattended, valuing control and autonomy in this

one area of her life, yet be unsteady on her feet and

prone to falls. To ensure her physical safety, her

caregivers could prevent her from walking unattended by physically restraining her in a chair, but

this decision would conflict with the goal of

maintaining her autonomy (831).

Service providers and others often have several

goals in caring for a person with dementia. When

those goals imply different methods of care in a

given situation, priorities must be set, either implicitly or explicitly, in order to determine what good

care is in that situation (385). A list of goals in which

priorities are not clear is not sufficient to resolve

questions about appropriate methods of care in a

given situation; nor is such a list sufficient to

develop meaningful criteria to evaluate quality.

Identifying Effective Methods of Care

Effective methods of care must be identified in the

context of agreed-on goals. In the past few years,

many books and articles have been published

describing what the author or authors believe are

effective methods of care for people with dementia.

The goals of these methods of care are sometimes

explicit, but often they are not. Moreover, few of the

recommended methods have been subjected to

rigorous testing (932). Thus, belief in their effectiveness rests primarily on anecdotal evidence. Research

to evaluate the effectiveness of alternate methods of

care for people with dementia is essential, both to

improve services for these people and to develop

valid criteria to measure quality.

Developing Criteria To Measure Quality

Criteria for evaluating quality generally pertain to

the structure, process, or outcomes of care. Structural criteria pertain to the resources available for

care (e.g., the number and qualifications of staff,

physical plant, and financial resources). Process

criteria pertain to the activities involved in care

(e.g., care planning, medication procedures, and

procedures for handling difficult patient behaviors).

Outcome criteria pertain to aspects of the patient’s

condition that are attributable to the process of care

(e.g., functional ability, participation in activities,

and patient satisfaction) (172).

Many commentators use structural, process, and/

or outcome criteria to express their answers to the

question, “What are good services for people with

dementia?” Sometimes, these criteria are presented

in the context of goals and methods of care, but often

they are not. Families and others may latch onto a

single criterion or Criteria relevant to only one aspect

of care and assume that any service that meets those

criteria is good. Thus, for example, some families

might believe that a specified physical design

ensures that a nursing home will provide highquality care. Although physical design is an important component of quality, it does not guarantee

good care (486).

The structure, process, and outcomes of care are

related. Structural criteria are indicators of quality

only insofar as the factors they reflect influence the

process and outcome of care. Process criteria are
Chapter 5--Concerns About the Quality and Appropriateness of Services ● 165

indicators of quality only to the extent that the

factors they reflect influence outcome, and outcomes are an indicator of quality only if they are

attributable to the structure and process of care. It is

widely agreed that, by itself, no single structural,

process, or outcome indicator is an adequate measure of quality and that all three types of indicators are

needed for a valid assessment (173,392,470,755,

832,925).

Information about structure, process, and outcomes may be more or less difficult for families and

others to obtain and more or less valuable to them.

Information about structural characteristics of a

given agency or service provider--e.g., the training

and experience of the staff-may be relatively easy

to obtain. The exclusive reliance on structural

criteria to evaluate quality has been criticized,

though, because structural characteristics indicate

only the capacity of the agency or provider, not the

services that are actually given (173,734).

Accurate information about the process of care--

i.e., the activities involved in care-maybe difficult

for families and other outsiders to obtain, in part

because they may not have an opportunity to observe

the process of care directly before they make a

decision to use the service. Survey procedures for

government regulation of nursing homes and other

agencies and for voluntary accreditation programs

include process criteria and may produce findings

that are useful for families and others who are trying

to evaluate the quality of services for a person with

dementia. Some processes that are selected for

observation or regulation for these purposes are not

linked or are only indirectly linked to the goals or

desired outcomes of services (563,831). Thus, they

may not be valid indicators of quality. A later section

of the chapter discusses the availability of findings

from regulatory and accreditation programs and

their potential value for people who are trying to

evaluate services.

Recognition of the limitations of structural and

process criteria and concern about the impact of cost

centainment on the quality of many types of services

have spurred new interest in outcome criteria

(392,470,925). Accurate information about the outcomes of services provided by different agencies and

individuals might be valuable to families and others

who are trying to select the best service provider. For

most of the types of services that maybe needed for

people with dementia, outcome measures are only

beginning to be used. Thus, information about

patient outcomes is not generally available.

Moreover, information about patient outcomes,

like information about structural and process indicators, may be difficult for families and others to

interpret correctly. The use of outcome criteria to

measure quality of care assumes a direct link

between the process and outcomes of care, but that

link is seldom simple or clear. Obviously, outcomes

that are not attributable to the process of care should

not be used to assess its quality (174,311,471).

Many factors other than the process of care can

affect patient outcome. These include the severity of

the person’s condition, the course of his or her

disease(s), and the ability and willingness of the

patient and family to cooperate with the process of

care. Because these factors affect outcome independently of any service, high-quality care does not

always produce good outcomes (392,755). Likewise, good outcomes may occur even if the quality

of care is poor.

Lastly, the use of outcome criteria to assess

quality requires a comparison between expected

outcomes and achieved outcomes. At present, very

little is known about the course of many diseases that

cause dementia, and people with dementia vary

greatly in the progression of their symptoms.5 As a

result, it is often difficult to judge whether observed

changes in a patient’s condition over time are the

result of services the patient received or an inevitable consequence of his or her underlying disease. As

more is learned about the normal course of diseases

that cause dementia, it will become easier to identify

valid outcome criteria to evaluate the quality of

services.

What Role Should Patients and Families Play

in Defining Quality and Specifying Goals and

Methods of Care?

Historically, what constitutes good care has been

defined by the providers of care (471,831,832).

Goals, methods of care, and criteria for evaluating

quality have been established by health care and

social service professionals and other service providers and reflect their point of view. Some commentators argue that patients should play a greater

5W topic w= &SCUSSed at greater length in ch. 1.
166 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

role in defining quality (130,737). Opinions on this

issue vary and may depend on the kinds of patients

and services that are being considered.

For many people, the need for medical care and

other health-related services is episodic and distinct

from their daily lives, and the services they receive

are intended to cure specific illnesses or solve other

health-related problems. For people with dementia

and other chronic debilitating conditions for which

medical cures and complete solutions frequently are

not possible, health-related and social services may

be needed over a prolonged period and may become

interwoven with the life of the patient and patient’s

family (if there is one). Services provided in a

patient’s home often involve intimate details of the

patient’s life (386). At the extreme, in a nursing

home, the care and the life of a patient may almost

merge (120,385).

In such situations, the quality of care and the

quality of the patient’s life may be barely separable--

and enhancing the quality of the patient’s life may

become the most appropriate goal of services.

People’s views about quality of life differ, however.

If enhancing the patient’s quality of life is the

Primary goal of care, some commentators suggest,

then patients’ values and preferences should be

reflected in the definition of quality of care (392).

Many commentators go further, suggesting that

patients’ values and preferences should be reflected

in the defitition of quality of care even if quality of

life is not the primary goal of services (174,471,768).

In fact, some commentators would probably consider the responsiveness of a service provider to

patients’ values and preferences itself to be an

important indicator of the quality of care.

Patients’ values and preferences can be reflected

in the defitition of quality of care in a number of

ways. They can be taken into account in establishing

the goals of care, in setting priorities among the

goals, or in selecting among alternative methods of

care (74). Criteria for evaluating quality can also be

chosen to reflect patients’ values and preferences

(470). One outcome indicator that measures quality

in relation to the patient’s values and preferences is

patient satisfaction. The importance given to other

outcome criteria can be adjusted to reflect patients’

values and preferences (130).

If a person is severely cognitively impaired or

unable to communicate, ascertainingg that person’s

values and preferences may be difficult or even

impossible. In some cases, the best way of ascertaining the person’s values and preferences is to consult

his or her family and friends about what the person

would have considered good care. Some commentators would probably want to limit the role of a

demented person’s family in defining good care to

representing the person’s values and preferences.

Other observers might argue that the values and

preferences of a demented person’s family are

relevant to determining what constitutes good care.6

An underlying assumption of this OTA study is

the importance of supporting family caregivers. In

some cases, supporting family caregivers means

giving them the information they need to evaluate

different care options (919). Supporting family

caregivers also may mean giving them a greater role

in defining quality and specifying goals and methods

of care. Several approaches for expanding families’

role in monitoring and controlling the quality of

services provided for their relative with dementia are

discussed later in this chapter.

Apart from consulting a person’s family and

fiends, another way of ascertaining the values and

preferences of a person with dementia is to use a

“values history. ” A values history is a document

that expresses a person’s wishes, values, and preferences with respect to his or her care. The Institute of

Public Law at the University of New Mexico has

developed a values history document for elderly

people as part of its “National Values History

Project” (252). The document is currently being

tested in hospitals, nursing homes, home care

agencies, and other sites. Recently, the Institute of

Public Law completed a project in which volunteer

‘‘temporary treatment guardians” successfully used

values histories to ascertain the wishes and preferences of hospitalized elderly people who were too

cognitively impaired to make decisions about their

own care and had no relative or friend to make the

decisions for them (802). Although the values

history document focuses on medical treatment

decisions, it does include questions about a person’s

attitudes about independence, self sufficiency, and

control and about his or her living situation, finances, and relationships with relatives and friends

GSome of the ~mes that arise in balancing the values and preferences of a demented person and the person’s family are discussed at greater length

inch. 4.
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 167

who might be involved in decisions about the

person’s care.

LIMITATIONS OF POSSIBLE

SOURCES OF INFORMATION

Given the complexity of the issues involved in

evaluating the quality and appropriateness of services for people with dementia, just discussed, it

would certainly be easiest for a federally mandated

linking system not to concern itself with the quality

and appropriateness of services to which it connects

people with dementia and instead to rely on families

and other informal caregivers to obtain for themselves the information they need to evaluate services. Many books, pamphlets, and articles that offer

advice to families and other informal caregivers

about how to obtain services for a person with

dementia suggest that caregivers are responsible for

selecting good services. The publications point out

that identifying good services takes time and that

caregivers may have to make many calls to find

someone who can help them identify good services.

Many of these publications recommend that caregivers of people with dementia start looking for

services and visiting facilities before they need them

(15,133,319,517,767).

The publications suggest that information about

the quality and appropriateness of serviceman

which caregivers could base their selection of

services-may be available from one or more of the

following sources:

relatives, friends, and acquaintances who have

used a service;

physicians, nurses, social workers, and other

health care and social service professionals;

professional and provider associations (e.g., the

State or local medical society, or nurses,

hospital, or nursing home associations);

the Alzheimer’s Association;

caregiver support groups;

‘‘dementia experts’

agencies that provide telephone information

and referrals;

hospital discharge planners and case managers;

State long-term care ombudsmen;

●

●

●

●

●

●

aging network agencies (e.g., the State office on

aging, area agency on aging (AAA), or a senior

center);

other State and local government agencies (e.g.,

offices of the State departments of health,

mental health, human services, social services,

or public welfare);

government regulatory agencies;

voluntary accreditation programs;

internal quality assurance programs; and

other possible sources of information (15,38,

133,464,527,767).7

OTA’s review in this section considers each of the

potential information sources listed above in terms

of two questions:

●

●

whether information about the quality and

appropriateness of services for people with

dementia is likely to be available from the

source, and

if so, whether the information is likely to be

accurate and/or helpful to families and others

who are trying to locate good services for a

person with dementia.

Many people whom OTA asked about how

families and others can obtain information about the

quality and appropriateness of services for people

with dementia said that families and other informal

caregivers should not be expected to obtain the

information themselves, and that such an expectation places too great a burden on many families.

Whether expecting families and other informal

caregivers to obtain information about the quality

and appropriateness of services places too great a

burden on them depends partly on how difficult it is

to obtain the information and partly on characteristics of the family or other caregiver and the

circumstances in which they are trying to locate and

arrange services. For some families and other

informal caregivers, the approach to obtaining

information about quality and appropriateness that

is recommended in most advice books and pamphlets--contacting a variety of people and agencies,

asking questions, and visiting potential service

providers-may work reasonably well. It is easy to

imagine numerous reasons why this approach would

not work well for many other families and informal

caregivers, however, and these reasons are discussed

?It is not always clear whether the publications that recommend some of these sources are suggesting them as sources of information about what

services are available or about what services are good. Readen of these publications probably assume, however, that at least some of the recommended

sources of information will be able to provide information about quality and appropriateness.
168 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

in the section of this chapter that considers limitations on caregivers’ abilities to obtain information

about quality and appropriateness. This section

focuses only on the availability and accuracy of

information about quality and appropriateness from

specific sources.

The information about quality and appropriateness that families and other informal caregivers need

to make informed decisions about services should

also guide decisions about services for people with

dementia who have no informal caregiver. It is

unclear, however, who would use the information

and what would happen to people with dementia for

whom no acceptable services could be found. These

questions are discussed later in this chapter.

The reader should bear in mind that the conceptual and practical difficulties in defining and evaluating quality that were discussed in the previous

section of this chapter are applicable to any information about quality that may be provided by the

sources discussed here. In the following discussion,

those difficulties are assumed to exist and are not

repeated for each source.

Relatives, Friends, and Acquaintances

Who Have Used a Service

Relatives, fiends, or acquaintances who have

used a service are a possible source of information

about its quality. They have first-hand experience

with the provider, and to the extent that their needs

are or were similar to those of the patient for whom

services are being sought, their judgments about

quality may be accurate and helpful.

The story of Mrs. D in chapter 1 includes an

instance in which advice about the quality of a

service provider that was offered by a chance

acquaintance proved helpful. One of Mrs. D’s sons

who called the local AAA happened to talk to a

secretary there whose mother had Alzheimer’s

disease. The secretary had used a local adult day

program for her mother and recommended it highly.

Mrs. D’s sons visited the center and agreed with her

assessment.

Although the advice of a chance acquaintance

proved helpful in Mrs. D’s case, there are several

drawbacks to relying on relatives, friends, or acquaintances for judgments about the quality of

services. One is that relatives, friends, and acquaintances may not know anyone who has used a

provider of the type that is needed. Another is that

the judgments of friends and acquaintances may

reflect values and preferences of one family or

patient that are not shared by another family or

patient (767). A patient’s condition and care needs

and specific aspects of the patient’s caregiving

situation differ from one patient and family to the

next, so that what is good for one patient and family

may not be equally good for another patient and

family.

Another drawback to relying on judgments about

the quality of services that are made by relatives,

fiends, and acquaintances is that such judgments

may be based on observations of a single aspect of

an agency’s services or an isolated incident that does

not reflect the quality of the services in general. A

family may think highly of a nursing home, for

example, because they feel close to one staff

member who has been friendly or kind, even though

the care provided by the nursing home is not

particularly good overall.

Another drawback is that information about

quality that is obtained from relatives, friends, or

acquaintances may be based on outcomes that are

not attributable to the process of care and thus not

valid indicators of quality. The physical and mental

deterioration of a person with dementia is distressing

to everyone involved, and families may have difficulty separating their feelings about the patient’s

condition from their feelings about the service

provider. A family whose relative dies in a nursing

home after along, difficult illness, for example, may

have negative feelings about the facility, even

though the patient’s deterioration and death were

caused by his or her illness, not poor care.

A final drawback to relying on the opinions of

relatives, friends, or acquaintances about the quality

of services is that such individuals are likely to have

had experience with only one or two service

providers. Although they may offer correct information about those providers, they are unable to assist

the caregiver in comparing the quality of services

offered by other providers.

Physicians, Nurses, Social Workers, and Other

Health Care and Social Service Professionals

People are used to relying on their physician for

referrals to medical and health-related services

(832). For many people, relying on a physician may

be the easiest and most comfortable way to get the
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 169

name of a good service provider. Ideally, a physician

who has a long-standing relationship with a patient

and family can match what he or she knows about

them and what he or she knows about service

providers in the community and recommend the best

provider for them.

This ideal often does not work in practice.

Families report that many physicians are not knowledgeable about the kinds of services that dementia

patients are likely to need and that some physicians

are not willing to spend time talking about services

(125,257,412,531 ).8 Physicians’ knowledge of community services is derived in part from feedback they

receive from patients and families they refer to

various providers. Physicians who have many patients with dementia may be more likely than those

with few demented patients to know about the

quality of relevant services.

Some people have a tie to a nurse, social worker,

psychologist, or other health care or social service

professional who might be knowledgeable about the

quality and appropriateness of services. Like physicians, these professionals have different areas of

expertise and serve different kinds of clients. Some

have extensive experience with community agencies

and providers who serve people with dementia,

whereas others may have never even visited a

nursing home, adult day center, or other agency

(390).

Health care and social service professionals usually have professional contacts that are a potential

source of information about quality that generally is

not available to families or other informal caregivers. In addition, because of their training, health

care and social service professionals have a frame of

reference for evaluating quality of care that most

families do not have. On the other hand, individual

physicians, nurses, social workers, or other health

care and social service professionals are unlikely to

have a systematic method for evaluating quality. As

a result, their judgments about quality, although

grounded in professional training and experience,

still are impressionistic.

It takes time for anyone to become familiar with

community agencies and service providers. Health

care and social service professionals who are new to

a community may know very little about the quality

of available services.

Lastly, some health care and social service

professionals are affiliated with service providers in

such a way that they benefit financially from

referrals, and some of them routinely refer patients

or clients to those providers even if they know that

better services are available from other providers. It

is not known how often this practice occurs.

For all the reasons just mentioned, health care and

social service professionals are likely to differ

greatly in their ability to provide helpful information

about the quality of services. In light of this

difference, a question that arises is: How can

patients, families, and others know which professionals are most likely to be helpiful? Another

question that arises is: When a specific physician or

other health care or social service professional gives

a caregiver the name of, say, a home care agency for

a person with dementia, how should the family

interpret the referral?:

●

●

●

●

●

●

Does the referral mean that the agency is one

that the professional recommends on the basis

of his or her extensive knowledge about the

quality of care provided by various home care

agencies in the community?

Does it mean that the agency is one that the

professional knows about and regards as good,

although he or she is not familiar with other

agencies in the community?

Does it mean that the agency is one that the

professional knows very little about?

Does it mean that the agency is one with which

the professional has some financial affiliation?

Does it mean that the professional is referring

the patient to the agency not because of the

quality of its care but because he or she knows

the agency will accept the patient’s source of

payment?

Does it mean that the professional is referring

the patient to the agency not because of the

quality of its care but because he or she knows

that the patient will be difficult to care for, and,

for the sake of future referrals, he or she wants

to maintain a good relationship with agencies

that provide better care?

Patients, families, and others may very well

assume that a referral from a physician or another

health care or social service professional implies at

least some endorsement of the agency or provider,

8For H= discussion of this topic, S= ch. 2.
170 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

and therefore they may not question the basis for the

referral. They also may not question referrals

because they think it would be disrespectful to the

professional or because they do not know what to

ask.

Some health care and social service professionals

routinely give patients or families the names of three

service providers in order to give them a choice.

Given the different knowledge and motivation of

professionals, the meaning of three referrals is no

more clear than the meaning of one referral:

●

●

●

Should the patient or family assume the first

name on the list is the one the professional

really recommends?

Might all three choices be good, or all three

poor?

Does a list of three providers imply anything

about quality?

I n summary, referrals to service providers by

individual health care and social service professionals may or may not indicate that the providers offer

good care. Patients, families, and others are unlikely

to know this, and without knowing it, they cannot

function as informed consumers in selecting services.

Professional and Provider Associations

Medical societies, nurses’ associations, and associations of other professionals and providers maybe

good sources of information about what services are

available. These organizations can often provide

lists of their members in a certain area or members

who say that they specialize in caring for certain

types of patients. Some also refer patients and

families to individual association members.

These lists and referrals generally are not evaluative however. They simply indicate that the individual provider or agency belongs to the association.

Except to the extent that belonging to a given

association or having been certified by such an

association is evidence of quality, the lists and

referrals do not provide information about quality.

The Alzheimer's Association

Advice books and pamphlets for caregivers of

people with dementia often advise caregivers to

contact the Alzheimer’s Association for information

about services. Many of these publications imply

that the Alzheirner’s Association-or more likely

one of its local chapters—will be able to provide

information about quality. One Alzheimer’s Association pamphlet says, for example:

Once you have located a service, you will want to

evaluate its quality and appropriateness to your

needs. Here again, your local [Alzheimer’s Association] chapter, whose members have gone through

this experience before you, can be of great help (15).

As discussed in chapter 8 of this report, information and referral is one of the primary functions of

Alzheimer’s Association chapters, but chapters vary

in the manner in which they perform it. In 1988, an

OTA contractor surveyed 10 Alzheimer’s Association chapters by telephone to learn about their

information and referral services (484). The chapters

were chosen to represent a range of sizes, urban/suburban/rural location, and the use of professional v.

volunteer staff. Among other questions, the chapters

were asked, “How do you determine the quality of

services to which you refer patients and families?”

Chapter respondents reported that they use three

methods to determine quality:

● informal communication with other agencies;

. advice from professionals on their board; and

. feedback from families.

One chapter respondent said, “This is a small

town. I know most of those places” (484).

None of the 10 chapters had a systematic way of

collecting information about the quality of services.

Most of the chapters reported that if they receive

negative feedback from a family about an agency or

provider, they “check it out’ and remove the agency

or provider from their referral list if they conclude

that the services are inadequate (484). One chapter

keeps a file box of families’ comments about service

providers and makes the box available to other

families (485). None of the chapters reported routinely asking families about the quality or appropriateness of services they had used. Two of the

chapters reported that they ask service providers if

they have a license and whether their staff is trained

to work with dementia patients. One chapter has a

list of nursing homes that have failed government

inspections (484).

In the opinion of the OTA contractor who

conducted the survey and who has visited many

Alzheimer’s Association chapters in addition to

those surveyed, the informal methods that chapters

use to evaluate quality usually work well and
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 171

chapters generally know which agencies and individuals provide good care for people with dementia

(484). She concludes that relying on an informal

process works as long as the network of providers

and users remains small and the chapter knows the

providers and the families and professionals who

give it information and feedback. As the network of

providers and users expands, however, it becomes

more difficult for chapters to maintain accurate

information about quality (484).

The Southeastern Wisconsin Alzheimer’s Association Chapter is currently under contract to the State

of Wisconsin to provide statewide information and

referral services for Alzheimer’s patients through

the Alzheimer’s Information and Training Center.9

It has created a computerized database of service

providers that is used to give callers information

about services in their geographic area (410).

According to the Southeastern Wisconsin chapter’s

education coordinator, how to provide information

about quality is “a big question” (263). Callers are

given three choices of service providers, if there are

three choices. They are told that there are important

differences in the quality of services offered by

different providers, and they are urged to visit

agencies and talk to providers before choosing one.

Callers are not told which agencies or providers give

good care. The chapter believes that it must be

‘‘unbiased,’ partly because of concerns about legal

liability. It believes, for example, that callers must be

given the names of all the nursing homes in a locality

that have a “special care unit,” not just the name of

one facility that the professional staff or volunteers

think is good.

Some Alzheimer’s Association chapters give out

printed materials with advice on selecting a particular kind of provider. Figure 5-1 is a list of questions

for evaluating an adult day care center distributed by

the Cleveland Alzheimer’s Association Chapter.

The Greater Washington, DC Alzheimer’s Association Chapter has a video for families to watch

about how to select a nursing home (232). The

chapter also has a list of members who have a

relative in a local nursing home or board and care

facility and are willing to talk to other families about

the facility.

Caregiver Support Groups

Caregivers who attend support groups sponsored

by the Alzheimer’s Association and other public and

private agencies often obtain first-hand information

from other caregivers about the quality and appropriateness of services they have used. Research indicates that participation in a support group leads to

increased knowledge about community services

(245) and that this aspect of participation in a

support group is valued by group members (294).

Many caregiver support groups devote meetings

or parts of meetings to discussions about community

resources (377). In relatively informal support group

meetings, outside experts may share their observations about the quality and appropriateness of

services offered by community agencies and providers more freely than they would in a more formal or

public situation. The leaders of support groups may

also be knowledgeable about community services

and willing to share their judgments about quality

and appropriateness, either during meetings or in

personal discussions later on (256).

The primary drawback to relying on caregiver

support groups as a source of information about the

quality and appropriateness of services is that many

caregivers do not belong to support groups. Male

caregivers, ethnic minority group caregivers, and

caregivers who have no one to care for the patient

while they attend a meeting are particularly unlikely

to belong (158,314).

“Dementia Experts"

“Dementia experts”—individuals who develop

or work in programs designed for people with

dementia or who serve many people with dementia--

are likely to have opinions about the quality and

appropriateness of community services based on

information from their own clients who use, or have

used, the services. Furthermore, in those communities with only a few agencies providing services

specifically for people with dementia, the service

providers are likely to know each other, to participate in planning any new service for people with

dementia, to be on the board of the local Alzheimer’s

Association chapter, to run support groups, and/or to

provide training about dementia for the staff of

nursing homes and other community agencies.

%or more information about the Alzheimer’s Information and Training Center operated by the Southeastern Wisconsin Alzheimer’s Association

Chapter, see box 8-G inch. 8. Additional information is provided in the section on State information and referral programs in ch. 7.
172 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Figure 5-1-List of Questions for Evaluating an Adult Day Care Center,

Distributed by the Cleveland Alzheimer’s Association Chapter

A. D. Alzheimer'sDisease

 and Related Disease Association, Inc.

Cleveland Chapter 1801 Chestnut Hills Drive Cleveland Heights, Ohio 44106 Phone: 216-721-8457

EVALUATIN G D A Y CAR E SERVICE S

Here is a handy checklist of questions to help you ascertain how well a facility is

equipped to fill its goal of providing respite for caregivers:

Is it convenient and accessible?

Does it provide or arrange for transportation?

Does it provide or arrange for companion/aid assistants to help the

care-receiver get up bathed, dressed and ready?

Are its service hours appropriate for your situation?

Do its services include family-supportive programming such as

caregiver support groups or referral services?

How expensive is it?

Is there financial assistance available?

Are there any hidden expenses, such as lunch fees, craft supply fees,

fees for outings?

Are there any hidden benefits, such as the availability of regular

professional testing for blood pressure, annual immunizations, hair

styling services, dental check-ups, etc. ? (Although such benefits will

typically require additional fees, they may be invaluable time-savers

for caregivers,)

Must you commit to a minimum amount of service, i.e., at least 2

days/week?

What is the notification policy for absence due to illness or scheduling

problems?

What is the policy concerning late arrival or late pick-up?

What are the notification policy and conditions for terminating

service?
Chapter 5-Concerns About the Quality and Appropriateness of Services . 173

Figure 5-l-List of Questions for Evaluating an Adult Day Care Center,

Distributed by the Cleveland Alzheimer’s Association Chapter-Continued

Here is a handy checklist for ascertaining how well a facility is equipped to meet the

needs of your loved one:

Does it perform a comprehensive assessment prior to placement,

including an evaluation of the client’s medical needs, social and family

history, cognitive functioning, and social skills?

Does it restrict or segregate its population by types of impairment or

by level of care required?

What is the ratio of staff to client? (Remember, a new facility is likely

to increase its participants over time; ask for the existing ratio, as well

as the worst case ratio.)

What training, education, and practical experience does the staff have

in dealing with care-receivers whose needs are comparable to those of

your loved one?

Is there a formal process for reviewing a client’s needs and evaluating

a client’s participation on a regular basis?

Is there an accessible and easy-to-talk-to person available to discuss

your loved one’s special needs, level of participation, etc., when

problems or questions arise?

Can the facility accommodate the special physical or medical

requirements of your loved one, i.e., can it:

dispense medicine?

give reminders about taking pills?

assist with toileting?

provide total access and participation to wheelchair-restricted

client?

effectively communicate with hearing impaired participants?

Does the client population appear to be compatible with your loved

one’s social history? (Some men are uncomfortable with an

overwhelming female group; some people are intolerant of racial and

ethnic differences. Unless you are honest about the realities of your

loved one’s social history, a lasting and effective placement will be

impossible. )
174 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Figure 5-1-List of Questions for Evaluating an Adult Day Care Center,

Distributed by the Cleveland Alzheimer’s Association Chapter-Continued

■ Are there specific behaviors or care needs which would enforce your

loved one’s withdrawal from the program? (Since Alzheimer’s disease

is a progressive disorder, you need to find out not only how a facility is

going to handle existing care needs, but also whether they are

prepared and able to handle potential ones, i.e., can they

accommodate:

■ Are

incontinence?

difficulties in speaking?

wandering?

special dietary requirements?

the programs and activities adult appropriate?

■ Does the programming include activities suitable to your loved one’s

social history and capabilities, i.e.:

gardening?

outdoor activities?

cultural activities?

music therapy?

physical therapy?

travel movies?

joint activities with children?

productive work, i.e., social service projects or work-for-pay?

homemaker crafts?

* How does the staff handle a client’s unwillingness to actively

participate?

* Are meals nutritious and attractively prepared?

* Are the staff and facility neat, clean, and orderly in appearance?

* Are there programs/activities which involve families?

SOURCE: J.F. Durante, “Evaluating Day Care Services,” Cleveland Alzheimer’s Association Chapter, Cleveland OH, no date.
Chapter S-Concerns About the Quality and Appropriateness of Services ● 175

Photo credit: Bill Adams

Caregivers who attend support groups often are able to obtain first-hand information about the quality and appropriateness of

services from other support group members.

Anecdotal evidence suggests that these “dementia experts” often provide accurate and helpful

information about the quality and appropriateness of

services to families and others who are lucky enough

or persistent enough to reach them. As the network

of service providers and users expands in a community, however, “dementia experts” may become

concerned about legal liability and thus increasingly

reluctant to recommend specific service providers,

especially to people they do not know.

Agencies That Provide Telephone

Information and Referrals

Agencies whose primary function is to provide

telephone information and referrals generally maintain a list of community agencies and providers that

includes the services they offer and sometimes their

area of specialization, service hours, eligibility

requirements, fees, etc. Telephone information and

referral agencies often give callers the names of

several agencies or providers from their list, but they

usually do not recommend specific providers. If

their list, which is usually compiled from information supplied by providers, includes a category of

services for people with dementia, they can give

callers information about which providers say they

offer such services.

In 1988, OTA contractors surveyed agencies in

Cuyahoga County, Ohio, to determine what services

they provided for people with dementia and interviewed representatives of 24 agencies that reported

providing information and referrals for people with

dementia (186).10 Only 1 of the 24 agencies was

primarily an information and referral agency; the

others were agencies that provide information and

referrals in conjunction with their other functions.

None of the agencies had systematic procedures for

evaluating the quality of services to which they

referred clients. Most of the agency representatives

said that agency staff members form opinions about

the quality of various services in the process of

arranging and monitoring services for their clients

and through informal discussions with colleagues

both inside and outside the agency (186). When the

agencies receive telephone requests for information

about services, agency staff members respond on the

basis of opinions formed in those ways.

IOM~~t of the fim~g~ of tie -ey ~d ~temiew~ ~ Cuyhoga county, ohio, ~ dis~ssed in ch. 2. A full mport on the study conducted for OTA

in Cuyahoga County is available from the National Technical Information Service in Springfield, VA (see app. A).
176 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

OTA’s contractors concluded that the telephone

referral process usually works satisfactorily--i.e.,

the agencies usually give callers the names of

providers they know about and regard as good (186).

The criteria agency staff use to evaluate quality are

not known, however, and their judgments about

quality may or may not be correct. Moreover, some

agency staff members believe that the services of

for-profit providers are not as good as the services of

nonprofit providers and rarely refer callers to forprofit providers. Lastly, some agency staff members

do not know about new services. In this regard,

OTA’s contractors noted that providers of new

services for people with dementia often complain

that agencies always refer callers to the old providers

and it is difficult for a new provider to “break in’

regardless of the quality and appropriateness of its

services (185).

Hospital Discharge Planners and

Case Managers

A major function of all hospital discharge planners and case managers is linking people with

services. In the process of performing this function

and through feedback from patients and families,

discharge planners and case managers form opinions

about the quality of services offered by various

community agencies and individual providers.

Published practice guidelines for hospital discharge planners and case managers emphasize the

importance of identifying high-quality services for

clients and of involving clients and families in

selecting services. The American Hospital Association’s “Guidelines for Discharge Planning,” for

example, state that hospital discharge planners

should identify “resources needed to assure highquality post-hospital care” and “develop with

patients and their families appropriate discharge

plans” (20).

The American Nurses’ Association’s guidelines

for nursing case management state that one of the

goals of case management is “the provision of

quality health care” and that an important function

of the case manager is “linking the client with

appropriate service providers’ (22). The National

Association of Social Workers’ publication “Standards and Guidelines for Social Work Case Management for the Functionally Impaired” stresses that

case managers should support informed client decisionmaking:

Photo credit: Cleveland Chapter of the Alzheimer’s Association.

Concerns about legal liability and organizational pressures

limit the ability of some hospital discharge planners and

case managers to provide families and others with

information about the quality and appropriateness of

services they may use for a person with dementia.

The case manager must assure that each client

receives appropriate assistance by providing the

client with accurate and complete information about

the extent and nature of the services that are available

and by helping the client to decide which services

will meet his or her needs (572).

Given their involvement in linking patients to

services and practice guidelines such as those just

mentioned, one might expect that hospital discharge

planners and case managers would be a good source

of information about the quality and appropriateness

of services. On the other hand, hospital discharge

planners and case managers are unlikely to have a

systematic method for evaluating quality. Consequently, their judgments about the quality of services may or may not be accurate. Furthermore, some

hospital discharge planners and case managers are

not knowledgeable about dementia and therefore

have no basis for determining whether a given

service is appropriate for people with dementia.

Even hospital discharge planners and case managers

who are knowledgeable about dementia may not be
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 177

a good source of information about the quality and

appropriateness of services for people with dementia, however, because of the concerns about legal

liability and organizational pressures that are discussed below.

Concerns About Legal Liability

A 1987 legal memorandum of the American

Hospital Association answered the question, “To

what extent, if any, can hospital discharge planning

personnel recommend, endorse, or steer discharged

patients to particular post-hospital facilities and

services?” in the following way:

It is not the discharge planner’s responsibility to

recommend or endorse particular after-care facilities

to patients; indeed, such recommendations or endorsements can expose both the hospital and hospital

employees who participate in the discharge planning

process to legal risks (21).

According to the 1987 legal memorandum, a

hospital can be liable for negligence for referring a

patient to a facility or service if the patient is injured

in some way there and the possibility of the injury

could have been foreseen by hospital staff:

The likelihood of liability is increased when

hospital discharge planning personnel go beyond

simply advising, notifying, or informing a patient of

his options, and affirmatively recommend or endorse

a particular option. A recommendation or endorsement suggests that hospital personnel have investigated the facility according to objective, uniform

criteria; are in possession of all information necessary to evaluate reasonably foreseeable risks to the

patient if the referral is made; and have determined

that the particular facility meets the patient’s needs

(21).

According to the 1987 legal memorandum, followup

telephone calls by discharge planners to patients or

families to ensure that their discharge plan is

working also expose the hospital to liability for

negligence, because such calls may imply that the

hospital is still responsible for the patient’s care (21).

To minimize legal risks, the American Hospital

Association’s memorandum advises that hospital

discharge planners should not decide on their own to

make recommendations about post-hospital services

or followup calls to discharged patients (2 1). Rather,

hospitals should establish general policies for discharge planners to follow in all but exceptional

cases, and they should designate a person to make

decisions about cases in which there may be some

reason for deviating from those general policies.

OTA has no information about how often hospital

discharge planners recommend specific service providers based on judgments about their quality.

Certainly, the concepts expressed in the American

Hospital Association’s 1987 legal memorandum

would discourage discharge planners from making

such recommendations.

That case managers may also be legally constrained from making recommendations about service providers based on judgments about their quality

is suggested by the decision in a 1987 Oregon case

Bionic Health Care, Inc. v. State of Oregon Department of Human Resources, et al. (70). Case managers in a public agency had stopped referring clients

to one nursing home that they believed was providing poor care and that was under review by the State

licensing and certification agency. The nursing

home sued, arguing that it had a valid State license

and was certified by Medicare and Medicaid and that

the case managers could not refuse to refer clients

there. The nursing home won, and the case managers

have been instructed not to make recommendations

to clients about service providers (435).

Again, OTA has no information about how often

case managers recommend certain service providers

on the basis of quality. One member of the advisory

panel for this OTA assessment, who interviewed

case managers who refer people to nursing homes,

found that the case managers generally believed that

they were legally constrained from making recommendations about nursing homes based on quality.

The panelist went on to comment that clients and

their families generally don’t know this (389).

People who make nursing home referrals in some

other countries may not be so constrained. In

Australia, for example, groups of health care and

social service professionals “blacklist” nursing

homes they believe provide poor care and do not

refer clients to these facilities; as a result, the

facilities are forced to improve the quality of care

they provide or risk going out of business (273). The

blacklisting is not capricious, however; grounds for

the decisions are identified systematically, in case

the decisions are challenged (485).
178 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Organizational Pressures

Organizational pressures also restrict some hospital discharge planners and case managers from

making referrals on the basis of quality. Case

managers employed by agencies that provide services in addition to information and referral and case

management are often expected to refer clients to

their own agency’s services rather than services

provided by other agencies, irrespective of the

quality of the services (186,386). Furthermore, some

agencies have formal agreements with other service

providers, and case managers employed by those

agencies are expected to refer clients to those

providers, irrespective of the quality or appropriateness of the services.

Organizational pressures to complete care plans

quickly also constrain discharge planners and some

case managers from making referrals on the basis of

quality. Medicare’s prospective hospital payment

system, instituted in 1983, creates strong financial

incentives for hospitals to reduce patients’ length of

stay. Discharge planners are under pressure to make

plans for patients’ post-hospital care quickly and

may not have time to arrange the best available

services (209,947). Moreover, some high-quality

services may not be available at the time a patient is

discharged from the hospital.

Case managers who are required to arrange

services within cost limits may be severely restricted

in their ability to make referrals on the basis of

quality. The case management literature is replete

with discussions of the conflict between the role of

the case manager as an advocate for the client, trying

to ensure that the client receives good services, and

the role of the case manager as an administrator of

resources, trying to ensure the cost-effective use of

limited services (48,175,230,382,893). In one role,

the case manager is seen as the agent of the client

and, in the other, the agent of the agency or system.

Some commentators argue that the two roles—

client advocate and resource administrator-are not

necessarily incompatible if case management is seen

as serving an entire population at risk and attempting

to meet the needs of that population within available

resources (384,892). As noted in chapter 3, a study

of 127 case managers in Oregon and Washington

State found that the case managers did not perceive

the two roles to be in conflict (47). But the theory and

practice here are from the point of view of the

system, not the client. If there were more than one

provider of a certain type of service in a community,

and case managers gave patients and families

accurate information about the relative quality of the

services, it is hard to imagine why some patients and

families would accept poor-quality services, knowing that other patients and families were receiving

better services (assuming, of course, that the patients

and families were equally able or unable to pay for

the services).

Most private geriatric case managers are not

subject to the organizational constraints discussed

above and may therefore be able to provide information about their perceptions of the quality of services

offered by various providers. Some private geriatric

case managers visit or interview most of the

agencies and providers to whom they refer their

clients (357,450). On the other hand, hiring a private

geriatric case manager can be costly and thus not a

realistic option for many patients and families. In

addition, some private geriatric case managers

provide certain services themselves and may not

give clients information about other providers of

these services (390).

OTA’s advisory panel and consultants for this

study agreed that at the very least, the staff of

agencies that are designated to constitute a national

linking system for people with dementia should

disclose to their clients any legal or organizational

factors that limit their ability to give clients accurate

information about the quality and appropriateness of

services or to make referrals on the basis of quality.

Beyond that, perhaps ways could be found to enable

the staff of agencies that constitute the linking

system to provide their clients with information

about the quality and appropriateness of services and

to connect their clients to what they consider the best

available services.

State Long-Term Care Ombudsmen

The Older Americans Act mandates that every

State have a long-term care ombudsman to investigate and resolve complaints of residents of nursing

homes and other residential care facilities. The

long-term care ombudsman program is implemented

differently indifferent States, but it is clear that State

long-term care ombudsmen and local paid ombudsman employees and volunteers are knowledgeable

about the quality of services provided by long-term

care facilities. They generally will talk to families

and others about the services provided by different
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 179

nursing homes and board and care facilities, and

many of them seek opportunities to talk to individuals or groups about steps to take in selecting a

facility. They usually do not specifically recommend

one facility over another. Some ombudsmen tell

callers whether they have had complaints about a

facility and, if so, what the subjects of the complaints

were and whether the facility cooperated in resolving them (561,629). Other ombudsmen are more

cautious about giving out such information.

One drawback to relying on State long-term care

ombudsman programs for information about the

quality of nursing homes and other residential care

facilities is that many people are not aware of their

State program, and families may not know how to

contact the ombudsman. In addition, ombudsman

programs in many States are underfunded and

understaffed to take on the job of helping people

choose good facilities. Lastly, some ombudsmen

may not be knowledgeable about dementia and

therefore may have no basis for determining whether

a given facility provides good care for people with

dementia.

The Robert Wood Johnson Foundation is currently funding an “Ombudservice” for home care

clients through the Community Council of Greater

New York (140). Like State ombudsman programs,

the Ombudservice focuses on resolving client complaints-in this case, complaints of people receiving

Medicaid-funded personal care services. In the

process of investigating complaints, the program

accumulates information about the quality of various personal care providers, but that information is

not currently available to the public (561).

Aging Network Agencies

Aging network agencies include State units on

aging, area agencies on aging (AAAs), senior

centers, and other agencies that receive Older

Americans Act funds.11 Books and pamphlets that

advise families about how to locate services often

recommend that they contact such agencies for

assistance. Although aging network agencies vary

greatly, most of them will give families a list of

service providers. In addition, many aging network

agencies distribute written materials on how to

select a provider, and some offer case management

to help people locate and arrange services.

In any of these agencies, a family might find

someone who knows about community services and

is willing to share his or her opinions informally

about the quality of services offered by different

providers. OTA is not aware of aging network

agencies that have a systematic method for evaluating service providers or giving families and others

information about their relative quality.

Other State and Local Government Agencies

In some States, State and local offices of the

departments of health, mental health, human services, social services and/or public welfare, and

regional or local health planning agencies have lists

of providers, their services, and their practice

specialties, which can be requested by anyone.

People may also be able to find out from one or more

of these agencies whether certain providers are

licensed and to obtain the results of government

inspections of facilities. The agencies are unlikely to

provide other information about the quality of

specific service providers. As with aging network

agencies, however, families may be able to find

someone in any of the agencies who is knowledgeable about providers and willing to talk informally

about their quality.

Government Regulatory Agencies

Various government agencies regulate health

care, long-term care, and other services that may be

needed for people with dementia:

●

●

●

State agencies license individual professionals

and nonprofessional service providers (e.g.,

physicians and home health aides).

State and local government agencies license

health care and long-term care agencies (e.g.,

nursing homes and home health care agencies).

Federal and State Medicare and Medicaid

agencies certify facilities and service providers

that receive reimbursement from Medicare and

Medicaid, and they contract with peer review

organizations (PROS) to review the hospital

care and some nursing home and home health

care provided to Medicare and Medicaid beneficiaries.

Each of these regulatory agencies has several

purposes, one of which is to safeguard quality of

care.

llFor more ~o~tion on aging network agencies, in pdcul~ AAAs, see ch. 8.
180 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

If government regulation guaranteed that all

services were at least adequate, families and others

would not have to worry about basic aspects of

quality and could concentrate instead on finding

services that matched the individual needs of the

patient. Government regulation does not prevent

inadequate care, however. A range of quality, from

excellent to poor, is found in agencies subject to

extensive regulation, and inadequate care is given by

regulated and unregulated providers and in regulated

and unregulated settings (305,524,563,816,821,

836,875).

Many factors contribute to the persistence of

poor-quality care despite government regulation.

The factor cited most often is inadequate funding for

services (87,205,331,376,392,563). A related factor

is the shortage of qualified personnel-especially

nurse’s aides, home health aides, and homemakers

who provide much of the paid personal care for

people with dementia (109,305,331,563,821,852).

The shortage of qualified aides and homemakers is

due in large part to inadequate funding. These

individuals are paid very little. They are often poorly

trained. Turnover is high, and those who receive

training do not necessarily stay with the job. It is said

that nursing homes and home care agencies compete

for workers with McDonalds and other fast food

restaurants-and often lose (747).

A third factor that is cited as contributing to the

persistence of poor-quality care despite government

regulation is deficiencies in regulatory procedures

(17,305,392,563,814,821,831,852). Deficiencies in

regulatory procedures include the use of inappropriate standards for evaluating quality, infrequent

monitoring of care, and lack of credible sanctions for

poor care. Many regulatory programs are underfunded and do not have sufficient staff for inspections and enforcement proceedings. This weakens

the regulatory effort.

Government and nongovernment agencies and

voluntary associations are working to improve

regulatory procedures. A description of their efforts

and analysis of the potential for their success would

require another full study. Suffice it to say that

efforts to improve regulatory procedures for nursing

homes and board and care facilities have been under

way for more than 10 years, with some but certainly

not full success. Efforts to improve regulatory

procedures for in-home services are only beginning.

Many people will have to select services long before

government regulatory programs are improved sufficiently to guarantee that all available services are

at least of adequate quality.

In the meantime, the question posed here is

whether the results of existing regulatory procedures

would be helpful to people who are trying to select

good services. If a provider has a State license, can

families assume the provider will give good care? If

a nursing home is certified by Medicare, does that

mean it provides good care? Is there information

from government inspections of nursing homes and

home health care agencies that is available to

families and is or could be valuable to them in

selecting services?

The answers to these questions vary from one

State and locality to another, for different types of

providers, and for services paid for by different

funding sources. Much of the information needed to

answer the questions is not available. It is probably

correct to conclude, however, that the results of

existing regulatory procedures could be useful to

some people who are trying to select services, with

the following important qualifications:

●

●

Not all services that might be needed for people

with dementia are regulated. Although all

States regulate some types of board and care

facilities, they do not regulate other types.

Adult day centers are not regulated in some

States. Home health care agencies must be

certified by Medicare and Medicaid in order to

receive reimbursement from those finding

sources, but many agencies that provide inhome services are not eligible for or do not seek

Medicare or Medicaid certification. Many

States license agencies that provide some kinds

of in-home services, but agencies that provide

other kinds of in-home services are not required

to be licensed, and some States do not license

any home care agencies (305,821,852). Moreover, individual in-home workers employed by

home care agencies differ in their abilities and

motivation; the agency’s license, if any, does

not reflect these differences. Lastly, individual

in-home workers who are not employed by an

agency and are hired from a newspaper ad or

other such source are not regulated in most

States.

Information from licensing, certification, and

PRO review procedures may be difficult for

families and others to obtain. In 1988, for the
Chapter S-Concerns About the Quality and Appropriateness of Services ● 181

●

●

●

first time, the U.S. Department of Health and

Human Services released information from

Medicare and Medicaid nursing home surveys.

To get information about other types of agencies and service providers, one would have to

know that the information exists; find out

which State or local government office keeps

the information; obtain permission to see it; and

probably go there to do so. Some agencies

require a prior written request for information

and charge a fee. OTA does not know how

many people attempt this process or succeed in

getting the information they want.

Regulatory procedures are often based on

minimum standards and/or standards that are

not directly related to people’s primary concerns about quality. State licensing requirements for professionals and service providers

often set minimum standards for training and

experience. Licensing requirements for some

types of agencies focus only on fire and safety

standards. The criteria used in some survey and

certification procedures translate only indirectly into quality of care. Thus, the information about quality that families and others are

looking for may not be contained in the

findings of regulatory procedures.

People mu-y have difficulty interpreting information from regulatory procedures. Some regulatory procedures are lengthy and complex.

Reports of their findings are not written for the

layperson. Moreover, people who are not

familiar with the procedures and the agencies

being surveyed may not know which findings

are noteworthy. In support of this observation,

one OTA advisory panelist commented, ‘There

are violations, and then there are violations!”

(390).

Information from existing regulatory procedures is not dementia-specific. OTA is not

aware of any State or locality that regulates

services for people with dementia using different criteria or procedures than it uses to regulate

services for people with other diseases and

conditions, although some States now are

developing criteria to evaluate “special care

units’ in nursing homes. Since dementiaspecific criteria have not been used in regulatory procedures (and generally have not been

available), information about aspects of agencies’ services that might make one agency’s

services more appropriate than another agency’s

●

All

services for a person with dementia may not be

collected in the regulatory process or included

in regulatory reports.

Information derived from regulatory procedures may not be correct. Some regulatory

procedures rely on notes in patients’ medical

records and the agency’s written policies to

evaluate quality of care rather than on direct

observations of the process of care. This

approach can lead to what is called “paper

compliance’—i.e., agencies meet quality standards on the basis of documentation inpatients’

medical records and written policies rather than

actual care they provide (385,925). Even when

inspectors do observe the process of care, what

they see may not be the ordinary process of

care, but rather a special show put on to impress

them (120).

these factors limit the usefulness of findings

from government regulatory procedures for families

who are trying to select good services.

It is not clear to what extent individuals and

agencies that refer people to services use the

findings from government regulatory procedures as

indicators of the quality of services. OTA informally

asked about 20 individuals and agencies that make

referrals for people with dementia: 1) whether they

check to see that service providers to whom they

refer patients have required licenses or certification,

and 2) whether they review government inspection

reports on agencies to which they refer patients. The

majority answered “no” to both questions. State

long-term care ombudsmen do often use reports of

nursing home inspections in their discussions with

people who are trying to select a good nursing home.

Government regulatory programs could be designed to produce information about quality that

would be helpful for people who are trying to select

good services (385,738), but existing programs are

not designed for this purpose. The Omnibus Budget

Reconciliation Act of 1987 mandated changes in

many requirements for Medicare and Medicaid

certification of nursing homes and home health care

agencies, including anew survey protocol for home

health care agencies and changes in nursing home

regulations that also will result in issuance of a new

survey protocol. These new protocols should be

designed so that the information they collect is

useful to families and others who are trying to select

good services, and the resulting information should
182 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

be presented in a format and written in language that

a layperson can understand.

Voluntary Accreditation Programs

Some agencies that provide services for people

with dementia voluntarily comply with requirements of independent associations, such as the Joint

Commission on Accreditation of Health care Organizations (JCAHO), the National League for

Nursing (NLN), and the National Home Caring

Council of the Foundation for Hospice and Home

Care (FHHC). JCAHO accredits hospitals, nursing

homes, hospital-affiliated home health care agencies, and beginning in 1988, other home health care

agencies. Most hospitals in the United States are

JCAHO-accredited, as are more than half of all

hospital-affiliated home health care agencies (628)

and a small proportion of nursing homes (about

1,400 in 1986) (563).

NLN, in conjunction with the American Public

Health Association, accredits home health care

agencies. FHHC, a sister organization of the National Association for Home Care, accredits homemaker-home health aide agencies. Very few agencies are accredited by either group: as of 1986, about

100 agencies had NLN accreditation, and about 140

had FHHC accreditation (734).

Agencies that seek JCAHO, NLN, or FHHC

accreditation choose to be evaluated and pay for the

survey process that leads to accreditation. One might

assume, therefore, that it is important to these

agencies to provide high-quality care and to be

recognized for doing so. If that is true, accreditation

might be a useful indicator of quality for people who

are trying to locate good services.

There have been very few attempts to compare the

quality of care provided by accredited and nonaccredited agencies, however (832). In addition, although the outcome of an accreditation survey is

public information, the full report of an evaluation

usually is not, so one cannot review findings of the

survey with respect to specific standards.

Families and others who are trying to select good

services probably are not aware of accreditation.

Most books and pamphlets that advise people about

locating services for people with dementia do not

mention it. Moreover, when OTA informally asked

individuals and agencies that make referrals for

people with dementia whether they refer people to

home care agencies that are not accredited by

JCAHO, NLN, or FHHC, most were unsure, and

several acknowledged that they did not know very

much about accreditation for home care agencies.

Internal Quality Assurance Programs

Many health care, social service, and other

agencies have an internal process to monitor quality

of care and correct problems that are found. Internal

quality assurance is widely advocated as a way for

agencies to maintain acceptable quality of care.

Internal quality assurance safeguards quality if

monitoring is done systematically by people who

have the authority and resources to correct problems

(732). Otherwise, quality assurance can deteriorate

into a formality that diverts staff from patient care

and other important functions.

Although agencies with an effective internal

quality assurance program may provide better care

than other agencies, families and other outsiders

cannot know whether a particular agency’s quality

assurance program is effective or just a formality.

For them, knowing whether an agency has an

internal quality assurance program is not a useful

indicator of quality.

Other Possible Sources of Information

In some localities, private agencies and voluntary

associations collect and publicize information about

service providers. In New York City, for example,

the United Hospital Fund makes annual nursing

home inspections and then publishes information

obtained from the inspections (561).

Newspapers and other publications sometimes

rate agencies and health care professionals based on

the opinions of consumers or other health care

professionals. An example is the publication, Washington Consumers’ Checkbook, which has published

ratings of hospitals (885) and recently asked people

to evaluate homemaker/home health care agencies

they had used. Ratings in commercial publications

are likely to appear as a feature item, on a one-time

basis, and not to be updated regularly. According to

the editor of Washington Consumers’ Checkbook,

the time required to conduct surveys and interpret

the findings on a regular basis may not be justified

from a business standpoint because these features do

not attract many additional readers (428).
Chapter S-Concerns About the Quality and Appropriateness of Services . 183

Changes in ownership, management, or key staff

in nursing homes and other agencies can have a

dramatic effect on quality of care. Such changes

occur frequently in some agencies, so to be accurate,

ratings must be updated. Private agencies and

voluntary associations may not have the resources to

update ratings regularly.

Many books and pamphlets that inform people

about the types of health care, long-term care, social,

legal, and other services that may be available also

contain suggestions about how to evaluate services

and lists of questions for families and others to ask

service providers. Figure 5-2 is an example of a

checklist of questions for families who are trying to

select a nursing home.

Several national organizations have developed

initiatives to help people become informed consumers of services for themselves or volunteer advocates

to help others select good services. The National

Council on the Aging’s project “Long-Term Care

CHOICES,” sponsored several community forums

in Pennsylvania in 1987 to educate older people and

their families about long-term care options. Similar

forums were planned for other areas of the country

(308). The CHOICES project produced a series of

pamphlets about long-term care and a manual for

organizing a consumer education campaign on

long-term care.

The American Association of Retired Persons

(AARP) sponsors many projects to educate people

about long-term care and to train them to be

informed consumers of long-term care services. One

project in Washington, DC, is training volunteers to

be “home care advocates” to help other people

locate good home care services (791).

Summary

Many of the books and pamphlets that offer

advice about obtaining services for people with

dementia stress that the final decision about services

rests with the demented person’s family. These

publications urge families to talk to people, ask

questions, and visit agencies before choosing one,

and they recommend many possible sources of

information about the quality and appropriateness of

services. OTA’s review presented in the preceding

section suggests that accurate information about

quality and appropriateness is sometimes available

from some of the recommended sources but is not

consistently available from any of them. The most

helpful information often comes from informal

discussions rather than from formal referrals or

reports. But many telephone calls may be necessary

to find the right person to talk to.

Health care and social service professionals and

some of the other possible sources of information

may or may not be knowledgeable about the quality

or appropriateness of available services. With a few

exceptions (e.g., government regulatory programs

and voluntary accreditation programs), none of the

sources of information discussed above has a

systematic method for evaluating quality. The validity of the information they provide, therefore, is

difficult to judge.

Lastly, concerns about legal liability and organizational pressures may limit the ability of hospital

discharge planners, some case managers, and others

to make referrals based on considerations of quality.

Families are unlikely to know that these individuals

are subject to these legal and organizational constraints and may incorrectly assume that the referrals

they receive are endorsements of the services.

Some people get helpful advice, but there are no

sure sources of evaluative information, and many

blind alleys. Sometimes, obtaining accurate information or a referral to a good service provider seems

to be a matter of chance. Family caregivers who call

a lot of agencies, talk to a lot of people, and ask a lot

of questions probably increase the likelihood that

they will find the information they need to select

good services.

LIMITATIONS ON CAREGIVERS’

ABILITY TO OBTAIN INFORMATION

The discussion in the preceding section suggests

that obtaining accurate information about the quality

and appropriateness of services for people with

dementia is often difficult. Some families and other

informal caregivers are able to obtain the information they need by contacting a variety of people and

agencies, asking questions, and visiting potential

service providers, but for a variety of reasons

discussed in this section, other families and informal

caregivers are not.

To obtain information about quality, caregivers

first have to know which agencies or individuals, if

any, provide the services they need. In many
184 ● Confused Mind, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Figure 5-2—List of Questions for Families Trying To Select a Nursing Home

Yes No

1.

2.

3.

4.

5.

6.

Does the home have a current license from the

state?

Does the administrator have a current license

from the state?

If you need and are eligible for financial assistance, is the home certified to participate in

government or other programs that provide it?

Does the home provide special services such as

a specific diet or therapy that the patient needs?

11. Hallways

a Large enough for two wheelchairs to pass

with ease?

b. Hand-grip railing on the sides?

12. Dining room

a. Attractive and inviting?

b. Comfortable chairs and tables?

c. Easy to move around in?

d. Tables convenient for those in wheelchairs?

e. Food tasty and attractively served?

f. Meals match posted menu?

g. Those needing help receiving it?

13. Kitchen

a. Food preparation, dishwashing, and garbage areas separated?

b. Food needing refrigeration not standing on

counters ?

c. Kitchen help observe sanitation rules?

14. Activity rooms

a. Rooms available for patients’ activities?

b. Equipment (such as games, easels, yam,

kiln, etc. ) available?

c. Residents using equipment?

15. Special-purpose rooms

a. Rooms set aside for physical examinations

or therapy?

b. Rooms being used for stated purpose?

16. Isolation room

a. At least one bed and bathroom available

for patients with contagious illness?

17 Toilet facilities

a Convenient to bedrooms?

b. Easy for a wheelchair patient to use?

c Sink?

d. Nurse call bell?

e Hand grips on or near toilets?

f. Bathtubs and showers with nonslip surfaces?

18. Grounds

a. Residents can get fresh air?

b. Ramps to help handicapped?

— —

— —

. —

— —

— —

— —

— —

— — PHYSICAL CONSIDERATIONS — —

Yes No

Location

a. Pleasing to the patients?

b Convenient for patient’s personal doctor?

c Convenient for frequent visits?

d Near a hospital?

Accident prevention

a Well lighted inside?

b Free of hazards underfoot?

c Chairs sturdy and not easily tipped?

— —

— — — — — —

— . — —

— —

— — d. Warning signs posted around freshly

waxed floors?

e. Handrails in hallways and grab bars in

bathroom?

7 Fire safety

a, Meets federal and/or state codes?

b. Exits clearly marked and unobstructed?

c. Written emergency-evacuation plan?

d. Frequent fire drills?

e. Exit doors not locked on the inside?

f. Stairways enclosed and doors to stairways

kept closed?

8. Bedrooms

— —

— —

— —

— —

— —

— —

— —

— —

— —

— —

— — Open on to hall?

Window?

No more than four beds per room?

Easy access to each bed?

Drapery for each bed?

Nurse call bell by each bed?

Fresh drinking water at each bed?

At least one comfortable chair per patient?

Reading lights?

Clothes closet and drawers?

Room for a wheelchair to maneuver?

Care used in selecting roommates

— —

— —

— —

— — . —

— —

— — — —

— —

— —

— —

— —

— —

SERVICES

19. Medical

Physician available in emergency?

Private physician allowed?

Regular medical attention assured?

Thorough physical immediately before or

upon admission?

Medical records and plan of care kept?

Patient involved in developing plans for

treatment?

Other medical services (dentists, optometrists, etc ) available regularly?

Freedom to purchase medicines outside

home?

— —

— —

— .

9 Cleanliness

a Generally clean, even though it may have

a Iived-in look?

b. Free of unpleasant odors?

c. Incontinent patients given prompt atten -

tion?

10. Lobby

a. Is the atmosphere welcoming?

b If also a lounge, is it being used by residents?

c Furniture attractive and comfortable?

d. Plants and flowers?

e. Certificates and licenses on display?

— — — —

— —

— —

— —
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 185

20 Hospitalization

a Arrangement with nearby hospital for

transfer when necessary?

21, Nursing services

a. RN responsible for nursing staff in a

skilled nursing home?

b. LPN on duty day and night in a skilled

nursing home?

c. Trained nurse’s aides and orderlies on

duty in homes providing some nursing

care?

22. Rehabilitation

a. Specialists in various therapies available

when needed?

23. Activities program

a. Individual patient preferences observed?

b. Group and individual activities?

c. Residents encouraged but not forced to

participate?

d. Outside trips for those who can go?

e. Volunteers from the community work with

patients?

24. Religious observances

a. Arrangements made for patient to worship

as he or she pleases?

b. Religious observances a matter of choice?

25. Social services

a. Social worker available to help residents

and families?

26. Food

a. Dietitian plans menus for patients on special diets?

b. Variety from meal to meal?

c. Meals served at normal times?

d. Plenty of time for each meal?

e. Snacks?

f. Food delivered to patients’ rooms?

g. Help with eating given when needed?

27. Grooming

a. Barbers and beauticians available for men

and women?

28.

— .

29.

— —

— —

— —

— — .

— —

— — 30.

— —

— .

— — 31.

. — 32.

33. — —

34.

— —

ATTITUDES AND ATMOSPHERE

General atmosphere friendly and supportive?

Residents retain human rights?

a.

b.

c.

e.

f.

g.

h.

i.

j.

k.

May participate in planning treatment?

Medical records are held confidential?

Can veto experimental research?

Have freedom and privacy to attend to

personal needs?

Married couples may share room?

All have opportunities to socialize?

May manage own finances if capable or obtain accounting if not?

May decorate their own bedrooms?

May wear their own clothes?

May communicate with anyone without

censorship?

Are not transferred or discharged arbitrarily?

Administrator and staff available to discuss

problems?

a. Patients and relatives can discuss complaints without fear of reprisal?

b. Staff responds to calls quickly and courteously?

Residents appear alert unless very ill?

Visiting hours accommodate residents and relatives?

Civil-rights regulations observed?

Visitors and volunteers pleased with home?

scoring

— —

— —

— —

— —

— —

— —

— —

— —

— —

— —

— —

— —

— —

— —

— —

— .

— —

— —

— —

— — Generally, the best home is the one for which you check the most

— — “yes” answers. However, different homes offer different services.

— — You must decide which services are most important to you.

— . If the answer to any of the first four questions is “no,” do not use

— — the home.

— .

SOURCE: L.P. Gwyther, “Nursing-Home-Care Issues,” Understanding Alzheimer’s Disease, M.K. Aronson (ed.) (New York, NY: Charles Scribner & Sons,

1988).

communities, that information is difficult to obtain.12 To understand why they should investigate

different service providers, caregivers need to know

that available services are likely to vary considerably in their quality and appropriateness for people

with dementia; some caregivers do not know this

(57).

In addition, it takes time to evaluate different

service providers. Many caregivers delay looking for

services until their situation has become desperate.

Consequently, they are trying to locate services in an

atmosphere of crisis in which there is no time to

contact individuals and agencies that might be able

to give advice about the quality and appropriateness

of services (289,767).

Even if caregivers have time, some of them do not

have anyone to care for their demented relative while

they make telephone calls or visit agencies. Some

caregivers lack transportation to visit agencies, and

some are physically or cognitively impaired themselves. Furthermore, deciding to place a relative or

friend in a nursing home is emotionally upsetting to

many people (84,517,884), and decisions about

other services may be upsetting as well. People who

are upset may have difficulty remembering the

questions they are supposed to ask providers and
186 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

keeping track of what they have heard from various

sources about the quality of different services.

Another important point is that some people in

this country have never or rarely called a government agency or another source to ask for information

or advice. Because of personality, socioeconomic

status, educational or cultural background, and/or

language differences, some individuals may find

asking for information or advice very difficult.

Asking questions of service providers is also

difficult for some people. Books and pamphlets for

families of people with dementia and for elderly

people often include lists of questions they are

supposed to ask about agencies and service providers they may use. These lists are often long and

all-inclusive. Some questions are for the family to

answer, but most are for the service provider. Some

families would be uncomfortable asking a service

provider all or even a portion of the questions.

For all of these reasons, some families and other

informal caregivers may be unable to obtain the

information they need to make informed choices

about services. A linking system that relied on

families and other informal caregivers to function as

informed consumers in selecting services for people

with dementia would not meet the needs of families

and other caregivers who cannot do so.

Finally, although the discussion here has focused

solely on the limitations on caregivers’ ability to

obtain information about the quality and appropriateness of services, the reader should keep in mind

that at least 10 percent of people with dementia have

no informal caregiver to help them.13 Clearly, those

individuals are not able to obtain for themselves

information about the quality and appropriateness of

services. Nor would they be able to use the

information, even if they could obtain it.

APPROACHES FOR DEVELOPING

CRITERIA TO EVALUATE THE

QUALITY OF SERVICES

The development of criteria to evaluate the

quality and appropriateness of services for people

with dementia is probably the most important step

that could be taken to enable a federally mandated

linking system to connect people with dementia to

the best available services. Certainly if a linking

system were going refer people to or arrange for

them only services that met certain standards, the

standards would have to be based on accepted

criteria. As noted at the beginning of this chapter, it

is not the function of a linking system to develop

criteria to evaluate services, but this section discusses some of the criteria that might be used, who

should develop them, and who could use them.

Criteria to evaluate the quality of services for

people with dementia ultimately must be based on

agreed-on goals and proven methods of care. Since

there is not yet a consensus about the goals of care

for people with dementia, and the effectiveness of

many methods of care has not been tested, it is

premature to establish comprehensive criteria to

evaluate quality. Once set, the criteria could become

entrenched and discourage the kind of experimentation that has led to innovative services and care

methods in the past few years. This outcome would

be especially likely if the criteria were adopted for

government regulatory purposes.

In developing its “Best Practices for Special Care

Programs for People With Alzheimer’s Disease and

Related Disorders,” the American Association of

Homes for the Aging (AAIA) has been wary of this

possibility. AAHA emphasizes that the “best practices” are not criteria to assess special care units but

rather guidelines for nursing homes that may establish such a unit. They are intended to highlight

desirable outcomes and examples of good care

(793).

The tasks of specifying goals, identifying effective methods of care, and developing criteria to

measure quality and effectiveness are interrelated.

Conclusions in one area may clarify or resolve issues

in other areas. As tentative goals are set, possible

methods of achieving them can be identified and

tested. At the same time, as methods of care are

tested, it becomes clearer what goals are achievable.

A major unresolved question with respect to longterm care services for people with dementia, for

example, is the extent to which rehabilitation is

possible. Is it reasonable to expect improvements in

cognitive ability or functioning in this patient

population? (390). The answer to that question,

which must be derived from research and experimentation with alternate methods of care, will in turn

lsFor the derivation of this estimate, see ch. 1.
Chapter 5--Concerns About the Quality and Appropriateness of Services ● 187

determine what goals are realistic for services for

people with dementia.

Even though it is premature to establish comprehensive criteria to evaluate the quality of services for

people with dementia because of the lack of agreedon goals and proven methods of care, an attempt to

identify possible criteria is helpful in pointing out

areas of agreement and disagreement and areas in

which further research would be useful. The following discussion is intended in that spirit.

What Criteria Might Be Used?

Two prerequisites for good care that are cited in

virtually all books, pamphlets, and articles about

services for people with dementia are that the service

providers be knowledgeable about dementia and that

they be skilled in caring for or responding to the

special needs of people with dementia. OTA is not

aware of any other factors that are so consistently

cited as prerequisites for high-quality, appropriate

services for people with dementia.

OTA’s 1987 report Losing a Million Minds:

Confronting the Tragedy of Alzheimer’s Disease

and Other Dementias discussed the problems involved in attracting and retaining skilled, knowledgeable personnel to work with dementia patients

and the education and training needs of professionals, paraprofessionals, and nonprofessionals who

care for these patients (831). That report described

education and training needs in terms of both factual

information and relevant experience.

If there were criteria that accurately measured a

service provider’s knowledge about dementia and

skills in working with people with dementia, those

criteria probably also would be valid structural

indicators of the quality and appropriateness of the

services. In many fields, an individual’s knowledge

and skills are represented by his or her credentials

(e.g., educational degrees, licenses, certificates) or

job title. Although some aspects of the knowledge

and skills of many professional, paraprofessional,

and nonprofessional groups are relevant to the care

of people with dementia, OTA is not aware of any

group with a uniform credential or job title, in which

all or even most of the group members are knowledgeable about dementia and skilled in caring for

people with dementia. Some physicians, nurses,

social workers, lawyers, and psychologists are

knowledgeable about dementia, whereas others are

not. The same is true for nursing home aides, home

health aides, homemakers, and other paraprofessional and nonprofessional service providers. Thus,

neither credentials nor job title are valid criteria to

measure service providers’ knowledge about dementia and skills in working with people with

dementia.

An alternate structural criterion is training. Dementia-related training often encompasses the nature and course of diseases that cause dementia,

symptoms, patient care needs, recommended responses to common behavioral problems, and methods for supporting family caregivers. Many public

and private agencies and voluntary associations

offer training for all kinds of people who work with

dementia patients. Training manuals have been

developed by Alzheimer’s Association chapters,

provider associations, and others.14

Some Alzheimer’s Association chapters have or

are developing procedures for formally certifying

people they have trained (183). At least one chapter

certifies in-home respite and personal care workers

it has trained. When someone contacts the chapter

for information about such workers, he or she is

given the names of people the chapter has certified.

The director of the Cleveland Alzheimer’s Association Chapter points out that chapters also could

certify agencies if they have trained the agency’s

staff. Because of high staff turnover in some nursing

homes and home care agencies, however, certification would lose its meaning quickly unless training

were repeated frequently (183).

To choose training of service providers as a

structural criterion to measure the quality and

appropriateness of services assumes that training

about dementia and how to care for people with

dementia significantly increases the trainee’s knowledge and skills in working with people with dementia—an assumption that is widely held but has not

been proven in this or related contexts (31,904). The

content and duration of the training, who provides it,

14sw, fore~ple: EL. BrNa.rdand L.P. G~er,]n-HomeRe~ite Care: Guidelines for Training Respite Workers Serving ~emo@mpairedAdu/ts

(50); C.J. French etaL, Understanding andCaringfor the Person With Alzheimer’sDisease (231); L.P. Gwyther, Care ofAlzheimer’sPatients:A Manual

for Nursing Home Staf(285); J.T Harkulich and B.A. Calami@ A Manual for Caregivers of Alzheimer’s Disease Clients in Long-Term Care (618);

~d R. Kahn et al., How To Care for the Alzheimer’s Disease Patient: A Comprehensive Training Manual for Homemaker-Home Health Aides (378).
188 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

whether trainees are tested in any way, and whether

the training is reinforced over time probably influence its effectiveness. Although some members of

the advisory panel for this OTA study considered

training a useful structural indicator of quality and

appropriateness, others considered it a weak, unproven intervention that generally is not a valid

indicator of quality.

Some members of the OTA advisory panel

pointed out that it is often easier to obtain agreement

about indicators of poor quality than of good quality.

They suggested that identifying negative outcomes

(e.g., patient agitation and screaming) and clearly

undesirable structural and procedural indicators

(e.g., lack of staff training and inappropriate use of

psychotropic medications to control patient behavior) might make available some information about

quality without setting comprehensive criteria. Certainly information about the performance of different service providers with respect to these negative

criteria would help families and others to avoid very

poor-quality care.

Many other criteria for evaluating the quality and

appropriateness of services for people with dementia

have also been proposed. Some researchers who are

conducting a 3-year study that compares nursing

homes with “special care units’ and nursing homes

without such units hope that their findings will allow

them to derive indicators of quality (761). Outcome

criteria they are considering include:

●

●

●

●

●

measures of acute health care service utilization, such as hospitalization rates and emergency room rates;

measures of mortality and morbidity, including

death, fractures, development of decubiti (bed

sores), and medication reactions;

changes in fictional status, including development of contractures, loss of ability to

ambulate, and changes in self-care status,

socialization, or mental status;

changes in the number and intensity of behavioral disturbances; and

changes in overall health (761).

Structural and process criteria they are considering include:

● staff-to-patient ratios;

● staff training;

. facility design;

●

●

●

●

●

environmental characteristics (e.g., noise, lighting, personal items in the patient’s room);

use of medications;

patient involvement in activities;

involvement of families; and

staff morale (761).

Caregiver burden is another outcome criterion

that seems particularly relevant for certain services

for people with dementia. On the other hand, many

factors other than the quality and appropriateness of

services affect caregiver burden. Outcomes are valid

indicators of quality only if they are attributable to

the process of care. In practice, therefore, a measure

of caregiver burden may not be a valid indicator of

quality.

Patient satisfaction and caregiver satisfaction

with services are other outcome criteria that might

be used to assess quality and appropriateness.

Although people who have used a service maybe a

valuable source of information for others who are

trying to select good services, OTA is not aware of

any organization that routinely collects people’s

opinions about services they have used for individuals with dementia, analyzes and summarizes the

findings, and makes them available to other people.

OTA is also not aware of any research on the

reliability or validity of patient and/or caregiver

satisfaction as indicators of the quality of services

for people with dementia.

Research on patient satisfaction as an indicator of

the quality of ambulatory and inpatient medical care

was reviewed for OTA’s 1988 report The Quality of

Medical Care: Information for Consumers (832).

Over 450 relevant publications were screened, and

50 studies were analyzed in depth. The review

indicated that:

●

●

●

●

patients’ ratings of the technical quality of care

they received are somewhat inflated but generally in agreement with physicians’ ratings of

the same care;

patients’ ratings of the interpersonal aspects of

care they received are generally in agreement

with ratings by trained observers and others;

patients are generally willing to discuss and rate

their medical care;

older people tend to rate the quality of their care

more favorably than younger people, although

the reason why is not known; and
Chapter .5-Concerns About the Quality and Appropriateness of Services . 189

● people tend to agree with attitude statements

regardless of their content; thus favorably

worded statements tend to elicit favorable

comments, and negatively worded statements

elicit negative comments--and this effect is

particularly likely to occur among people of

low socioeconomic status (832).

It is sometimes argued that patients’ ratings of

medical care reflect patients’ attitudes about life in

general. OTA’s literature review suggests that the

effect of patients’ attitudes about life in general on

their ratings of medical care, if an effect exists at all,

is weak in the case of ratings of ambulatory and

inpatient medical care (832).

Many people with dementia cannot evaluate the

services they receive, but their families or other

informal caregivers can. Some services are intended

primarily to support family caregivers; obtaining

caregivers’ evaluations of those services, therefore,

is clearly appropriate. In some instances, however, a

family’s evaluation of a service provided for the

patient may differ from the evaluation the patient

might make if he or she were capable of evaluating

the service. For example, families sometimes consider certain activities provided in nursing homes or

adult day care centers to be demeaning to their

relative with dementia, even though the patient

seems to like the activities and the staff believes they

are beneficial. In such instances, the family’s

satisfaction with the services may not be a valid

criterion to measure its quality or appropriateness for

the patient (764).

Other factors also may affect the validity of

patient and caregiver satisfaction as indicators of

quality and appropriateness. Patients and families

often are afraid to report poor-quality care because

they fear retaliation against the patient or loss of the

services (33,392). The validity of people’s opinions

about services also may be affected by the timing of

the evaluation in relation to their use of the service

(764), sociodemographic characteristics, their expectations for the service, and whether they paid for

it. Anecdotal evidence suggests that some people

who receive publicly funded services do not report

poor-quality care because they think they do not

deserve the services and that they should just accept

whatever services they get (747)

It could be argued that since patients’ and

caregivers’ opinions about services are, by definition, subjective, they cannot be valid indicators of

quality. If an agency or voluntary association

routinely asked patients and caregivers about the

quality of services they have used, however, and a

large number of responses were collected, idiosyncratic factors that might invalidate one individual’s

response would become less significant, and common observations and evaluations would emerge. It

is these common findings that would be valuable to

other people that are trying to select good services.

People’s opinions are a particularly appropriate

indicator of the quality of services if quality of life

is a goal of such services. Other, more objective and

more easily quantifiable criteria that frequently are

used in regulatory programs and may be more

acceptable to service providers do not necessarily

reflect the values and preferences of patients and

families (877).

Using patient and caregiver satisfaction as indicators of the quality of services for people with

dementia has two other advantages, as well. These

indicators could be used immediately, even before

there is agreement about other criteria to assess

quality. In addition, using them would make available some information about quality without setting

other criteria that could discourage experimentation

with alternate methods of care.

Who Should Develop the Criteria and

Who Could Use Them?

Government agencies, private agencies, and voluntary associations each have a role in establishing

criteria to evaluate the quality of services for people

with dementia. Ultimately, Federal, State, and local

government agencies determine what criteria are

used in regulatory programs. Government agencies

are unlikely to begin developing criteria to evaluate

the quality of services for people with dementia,

however, until they are required to do so for a

dementia-specific program--e.g., a program that

pays more for nursing home care in a special care

unit than in other nursing home units. If regulations

for nursing homes and home health care agencies are

any example, it could take a long time for government agencies to develop criteria, and the results

might not meet the needs of families and others who

are trying to select good services.

The initial steps of setting goals and proposing

and evaluating criteria to measure quality might be

better accomplished by private agencies and voluntary associations than by government agencies. The
190 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

tasks of soliciting, summarizing, and disseminating

people’s opinions about the quality of services they

have used would probably be best accomplished by

voluntary associations such as Alzheimer’s Association chapters, some of which already perform some

of the tasks informally. The most appropriate role for

government with respect to developing criteria to

evaluate the quality of services for people with

dementia might be to fund research to evaluate and

compare the effectiveness of alternate methods of

care and to sponsor forums for discussion among

health care and social service professionals, service

providers, families, and others about goals and

methods of care and criteria for evaluating quality.

Families and other informal caregivers could use

any criteria that were developed and/or any available

information about people’s opinions about the

quality of services to identify service providers who

offer high-quality care. Other agencies and organizations could also use the criteria and any available

information about people’s opinions about the

quality of services to evaluate service providers,

with the result that information about the quality and

appropriateness of services for people with dementia

would be available from those sources.

An important, unresolved question is whether

case managers and other employees of agencies that

constituted a federally mandated linking system

could use either the criteria or information about

people’s opinions about the quality of services to

select the best available services for their clients or

whether their use of such criteria and information

would expose them, their agencies, or the linking

system to unacceptable legal risks. To resolve this

question will require a thorough analysis of the legal

issues raised when an agency or system that links

people to services provides its clients with information about the relative quality of available services

or selects services for its clients on the basis of

information about the quality and appropriateness of

the services. The legal risks to the linking system

and its employees are likely to be lessened to the

extent that any information about quality and

appropriateness given out by the linking system is

perceived as accurate by service providers and

others and to the extent that criteria used by case

managers and other employees of the system to

select services are seen to reflect the best available

information from research and provider experience

about what is good care for people with dementia.

Thus far, this chapter has focused primarily on

how families and other informal caregivers can

select good services and has ignored the problem of

people with dementia who have no informal caregiver to help them. Certainly, as noted earlier, the

information about quality and appropriateness that

families and other informal caregivers need to make

informed decisions about services should also guide

decisions about services for people with dementia

who have no informal caregiver. That can only

happen if someone uses the information about

quality and appropriateness to select services for

these individuals. For that reason, it is particularly

important that concerns about legal risks to a linking

system and its employees for selecting services for

its clients on the basis of information about the

quality and appropriateness of the services be

resolved expeditiously.

AGENCY PROCEDURES FOR

MONITORING & CONTROLLING

THE QUALITY OF SERVICES

Some agencies that link people to services have

procedures for monitoring and controlling the quality of the services they arrange for their clients.

Certain of these agencies provide services and

therefore can assure (i.e., assess and correct problems in) the quality of those services directly. Other

agencies contract for services; these agencies cannot

assure the quality of services provided by any

particular agency or individual, but they can use

their contracting procedures to select service providers that meet certain standards. The capacity of these

types of agencies to control the quality of services to

which they link people is an important factor for

policymakers to consider in deciding what type of

agencies should constitute a system to link people

with dementia to services.

This section describes some agencies’ procedures

for monitoring and controlling the quality of services, including procedures in which patients and

families are involved in monitoring and controlling

the quality and appropriateness of the services they

receive. The potential role of case managers in

monitoring and controlling the quality and appropriateness of services for their clients is discussed at the

end of the section.

On Lok Senior Health Services, a San Franciscobased service delivery system, is an example of an

agency that provides most services directly and has
Chapter 5-Concerns About the Quality and Appropriateness of Services ● 191

an internal quality assurance process to monitor and

control quality (940).15 Clients or their families

make the decision to receive services from On Lok,

but once that choice is made, On Lok assumes

responsibility for quality of care.

Pennsylvania’s Long-Term Care Assessment and

Management Program (LAMP) is an example of a

program that contracts with community agencies to

provide services for its clients and has procedures for

monitoring and controlling the quality of those

services (652).16 LAMP’s clients are elderly people

who are eligible for Medicaid-funded nursing home

care but choose to remain at home. The State of

Pennsylvania designates local agencies (primarily

AAAs) as LAMP sites to provide a comprehensive

assessment, develop of a plan of care, and arrange

and monitor services for each client. In turn, the

LAMP sites contract with community agencies to

provide services.

Contracts between LAMP sites and community

agencies that provide services for LAMP clients

include many provisions related to quality (872). For

example, the fiscal year 1987 contract between the

Allegheny County LAMP site and the Visiting

Nurse Association (VNA) of Allegheny County

specifies services the VNA must provide; that the

VNA must be able to respond to emergency requests

within 24 hours; and that the VNA must have certain

staff, an orientation program, a method for certifying

employee participation in continuing education, and

an internal quality assurance program. Staff must be

licensed or certified as appropriate, and the agency

must be certified by Medicare and Medicaid and

accredited or eligible to be accredited by JCAHO,

NLN, or the FHHC.

Ohio’s Pre-Admission Screening System Providing Options and Resources Today (PASSPORT)

program is like LAMP in that it provides case

management and a package of services for people

who are eligible for nursing home care but choose to

remain at home (622).17 The agencies that administer PASSPORT at the local level contract with other

agencies to provide services for PASSPORT clients.

Their contracts include numerous provisions to

ensure the quality of services, including standards

developed for many different kinds of service

providers (32,623). The PASSPORT program’s

standards for homemaker services are shown in

figure 5-3.

Illinois’ Community Care Program (CCP) funds

homemaker, chore, and adult day services for about

25,000 elderly clients through contracts with more

than 200 community agencies, called vendors (51).18

Clients may select a service provider, but it must be

one of the vendors. The State of Illinois evaluates the

performance of each vendor annually, using a

90-item review instrument that encompasses many

aspects of quality and appropriateness. Vendors

found to provide inadequate services are terminated

from the program.

LAMP, PASSPORT, and CCP are State programs

that go far beyond their State’s licensing requirements, if any, and any relevant Medicare and

Medicaid conditions of participation in their requirements for contractors. People who receive publicly

funded services through different programs in the

same States may not receive the same quality of care

as clients of these programs.

New Jersey has taken a different approach. New

Jersey ’s Medicaid agency requires community agencies that provide personal care or homemaker

services to be accredited in order to be reimbursed

for services to Medicaid patients. Since 1986, the

Commission on Accreditation for Home Care, an

organization that is independent of the State has

accredited these agencies, based on uniform standards and an on-site inspection (168). As of August

1988,45 agencies had applied for accreditation: 24

of these received accreditation; six were denied

accreditation (primarily because of poor documentation, lack of evidence of appropriate supervision, or

inadequate staffing); 10 were deferred and may

reapply; and five withdrew their applications (430).

New Jersey accepts accreditation by the Foundation

for Hospice and Home Care (FHHC) in lieu of

accreditation by the Commission, and 9 agencies

have been accredited in that way.

In Tulsa, Oklahoma, five local sources of funding

for home health aide, homemaker, companion, and

chore services have pooled their funds and establsFor more information about On bk, see ch. 8.

IGFor more info~tion about Pennsylvania’s LAMP progr~ see ch. 7.

ITFor more information about Ohio’s PASSPORT pro~~ see ch. 7.

ISFor more information about Illinois’ COmmU@ Care ~OgI= (CCp), se ch. 7.
192 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

I.

II.

III.

IV.

v.

VI.

VII.

Figure 5-3-The Ohio PASSPORT Program’s Standards for Homemaker Services

Homemaker Services Standards

. .

Homemaking services are provided by a homemaker who has met the

education and training requirements for the PASSPORT program.

The homemaker provides timely services, maintains a safe and clean

environment and is sensitive to the client and family’s needs.

The homemaker performs tasks and duties according to the service care plan.

The homemaker prioritizes and organizes tasks to achieve goals outlined on

the care plan.

The homemaker understands that client information is privileged knowledge.

The homemaker holds all information in confidence.

Homemaking tasks assigned are performed under the supervision of the

homemaker supervisor. The homemaker demonstrates knowledge and skills

to perform assigned tasks,

The homemaker recognizes changes in client conditions and behavior and

reports and records according to PASSPORT and agency procedures.

The homemaker participates as a health care team member and is

responsible for communicating with other professional disciplines as

appropriate.

SOURCE: R. Applebaum, S.J. Atchley, R. McGinnis, et al., A Guide To Ensuring the Quality of In-Home Care: Final Report of Ohio’s QualityAssurance Project

(Oxford, OH: Miami University, 1988).

lished a joint process to contract for these services.19

The five funding agencies have formal procedures

for monitoring the quality of the services provided

by the contractor. Those procedures include sending

questionnaires to local hospitals, clinics, and other

referral sources to determine their satisfaction with

the contractor’s services. Client satisfaction with the

contractor’s services is also assessed by using a

standard list of questions (see figure 5-4). This list of

questions is used to interview about 10 percent of the

agencies’ clients annually (556).

In 1987, Senior Care Network, a private hospitalbased case management agency in Pasadena, California, began a comprehensive program to monitor

and control the quality of services to which it refers

clients (795). Senior Care Network combines four

case management programs: two of the programs

contract with service providers, and two do not, but

all four participate in the quality assurance program.

Quality is monitored through quarterly meetings

between the service providers and program staff;

annual reevaluations; monthly client home visits by

case managers; visits by program staff to the

provider agencies; and vendor incident reports that

often concern ‘‘no-shows” or late arrival by home

makers and nurse’s aides. If service providers

accumulate a record of more than 5 percent ‘‘noshows, ’ ‘ case managers stop using that provider

until the problem is corrected.

These models of service delivery, in which the

quality of services is monitored and controlled by

the agencies that provide, pay for, and/or arrange the

19The Tulsa Long-Term Care Management Authority, an outgrowth of the five-agency effort described here, is discussed in ch. 7.
Chapter 5--Concerns About the Quality and Appropriateness of Services ● 193

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

Figure 5-4-Questions Used To Evaluate Client Satisfaction in Tulsa, Oklahoma

Client Satisfaction Questionnaire

Read each statement below. Circle the response that is most true. There are

no right or wrong answers. No one from (home care agency) will see your

responses. Your responses will not affect your services. If you wish, the

interviewer will read the statements aloud.

I am comfortable with my worker from (home care agency) and I look

forward to him or her coming to my house.

NEVER SOMETIMES USUALLY ALWAYS

If I have a problem or question about services I would be comfortable talking

about it with my worker.

NEVER SOMETIMES USUALLY ALWAYS

If I had a problem I could not solve with my worker, I would be comfortable

going to the supervisor.

NEVER SOMETIMES USUALLY ALWAYS

My worker knows what to do and does it with little or no supervision from

me.

NEVER SOMETIMES USUALLY ALWAYS

The worker provides the services I expect.

NEVER SOMETIMES USUALLY ALWAYS

The worker finishes the job he/she is supposed to do.

NEVER SOMETIMES USUALLY ALWAYS

The worker takes longer than necessary to do the job.

NEVER SOMETIMES

I can depend on my worker to arrive

NEVER SOMETIMES

The worker does not perform tasks 1

NEVER SOMETIMES

I help decide what services I receive

NEVER SOMETIMES

USUALLY ALWAYS

on time.

USUALLY ALWAYS

can do myself.

USUALLY ALWAYS

in my home.

USUALLY ALWAYS

I am notified in advance if my worker will be late or cannot come.

NEVER SOMETIMES USUALLY ALWAYS

SOURCE: N.L. Mumma, “Quality and Cost Control of Home Care Services Through Coordinated Funding,”Quality Review Bulletin 13(8):271-278, 1987.
194 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

services, have considerable appeal, given the problems people face in obtaining accurate information

about the quality and appropriateness of services

otherwise. These models appear to respond to

concerns raised in this chapter about families and

other informal caregivers who are not able to obtain

information about the quality and appropriateness of

services themselves and people with dementia who

have no informal caregiver to select services for

them.

None of the programs described here is dementiaspecific. The Medicare Alzheimer’s Disease Demonstration that is being implemented at eight sites

nationally requires each site to offer clients with

Alzheimer’s disease a range of in-home and community services (504). The sites are not required to

contract for services, but that is an option. OTA does

not know whether any of the sites have developed

methods for monitoring and controlling the quality

of contracted services or what methods of quality

assessment and assurance will be used for brokered

services.

Procedures for Involving Patients and

Families in Monitoring and Controlling the

Quality of Services

Giving patients and families greater control over

the services they use is an approach that some

agencies use to address concerns about the quality

and appropriateness of services. This approach can

be implemented through a variety of mechanisms,

some of which have been discussed earlier:

involving patients and families in developing

the plan of care;

having patients and families monitor services

they receive;

using patient and family satisfaction as indicators of quality;

providing an effective grievance mechanism by

which complaints from patients and families

are received and acted on;

giving patients and/or families control over the

funds to pay for services; and

involving patients and families in the overall

design and evaluation of programs that provide

services for them (735,919).

With the exception of patient and family monitoring of services, each of these mechanisms provides

a way for patient and family values and preferences

to influence the services they receive. In the case of

people with dementia, it is probably more often the

family than the patient who is actively involved in

planning and evaluating services. As discussed

earlier, the family can be seen either as representing

the values and preferences of the patient in this

context and/or as representing its own values and

preferences.

Patient monitoring of services has been implemented formally in Ohio’s PASSPORT program.

Once a client’s plan of care is developed, the client

is given a checklist that indicates what services are

to be provided and tells the client to call the case

manager if specific problems arise (see figure 5-5).

Whether planned services are actually received—

i.e., whether a home health aide or homemaker

shows up and does what he or she is supposed to

do--is clearly a component of quality. Formal

reporting mechanisms like Ohio’s checklist offer a

promising approach for monitoring it.

Many families informally monitor the quality of

services provided for elderly relatives at home or in

a nursing home (84,209,928). OTA is not aware of

any research on the validity of families’ reports

about receipt or nonreceipt of services. OTA’s literature review on patient satisfaction as an indicator

of quality found that patients’ reports about what

medical services they receive are highly accurate

(832).

Having patients and families report on receipt of

services transfers only a small amount of control to

them. Another approach that has rarely been implemented in publicly funded programs for elderly

people but effectively transfers much more control

to them, is giving them funds or vouchers to

purchase services.

Family Survival Project, a San Francisco-based

agency for brain-impaired adults, has implemented

this approach in a program that gives family

caregivers vouchers to purchase home care services.20 Ths family is regarded as the employer of the

service provider. This approach allows families to

select home care workers who are acceptable to

them, and Family Survival Project has encountered

few problems with it (403).

~or more information about Family Survival Projecq see ch. 8.
Chapter 5--Concerns About the Quality and Appropriateness of Services ● 195

Figure 5-5--Checklist Given to Clients in Ohio’s PASSPORT Program

Client: Date:

Case manager: Telephone:

Instructions:

Personal Care Elimination

Bath Client to

Oral care Client to

— -.

Shampoo Client to

Shave

Skin care

Foot/nail care

Dress

Mobility

Transfers

Walking

Exercise

Assistive device

toilet

commode

bedpan

Homemaking Tasks

Kitchen cleaning

Bathroom cleaning

Living room cleaning

lncontinent care Bedroom cleaning

Ostomy care Change bed linens

Empty commode Grocery shopping

Errands

Trash removal

Nutrition Accompany to doctors

Meal planning

Breakfast

Lunch

Dinner

Snack

Feed client

Home delivered meals

PLEASE CALL CASE MANAGER IF:

WORKER FAILS TO SHOW UP

■ WORKER FAILS TO PERFORM DUTIES

■ THEFT OR ABUSIVE CARE

YOU WILL NOT BE HOME FOR SERVICE

**SIGN SERVICE AUTHORIZATION FORM ONLY FOR TH E

EXACT HOURS WORKED.

SOURCE: R. Applebaum, S.J. Atchley, R. MoGinnis, et al., A Guide To Ensuring the Quality of ln-Home Care: Final Report of Ohio’s Quality Assurance Project

(Oxford, OH: Miami University, 1988).
196 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

In 1983 and 1984, the same approach was used in

a Wisconsin demonstration project known as the

“Consumer-Directed Services Initiative” (CDS)

(919). Wisconsin’s CDS provided participants or

their families with vouchers to purchase services.

The 70 participants included individuals of all ages

with chronic disabilities who were eligible for

nursing home care. Several of them were Alzheimer’s patients. Participants had a service coordinator whose role was to ensure consumer direction:

Unlike the traditional case manager who is

accountable to a service-providing agency, the

service coordinator. . . is directly responsible to the

consumer. It is the consumer who decides what

services are needed and how they should be provided. The service coordinator uses his or her

knowledge of the service system and of the rights

and entitlements of the disabled consumer to explore

options which the consumer can choose among (919).

Wisconsin’s CDS demonstration project concluded that giving people vouchers and the opportunity for choice was an empty gesture unless they

were also given information about available service

options, training in how to bargain with and influence providers, and support for doing so (919). The

underlying assumption of the project was that the

client was “the boss, ” with the power to hire and

free, and the provider was expected to carry out

duties according to the client’s preferences. Many

clients and providers had difficulty with this employer/

employee relationship. Expectations differed about

what the provider would do; there were personality

conflicts; and some providers found it difficult to

respect the client’s preferences about how he or she

wanted services performed.

For most clients with Alzheimer’s disease, Wisconsin’s CDS demonstration project relied on the

family to make decisions about services for the

patient (919). The service coordinators who worked

with these patients and families frequently had

difficulty in deciding when, if ever, the values,

preferences, and interests of the family should take

precedence over the values, preferences, and interests of the patient and determining, in effect, ‘‘who

is the client” (919).21

Case managers, health care and social service

professionals, and others are sometimes ambivalent

about giving patients or families control over

services, partly because doing so challenges the

concept that it is professionals that can and should

evaluate client needs and prescribe appropriate

treatment (31 1,737). On the other hand, some are

justifiably concerned about the possibility that poor

care will be provided or that the patient’s needs will

be neglected in such an arrangement. Family Survival Project monitors intermittently services purchased through the voucher program. In Wisconsin,

the CDS service coordinator provided ongoing

monitoring.

What Role Can Case Managers Play in

Monitoring and Controlling Quality?

Many commentators have suggested that case

managers or a case management agency could

monitor and control the quality of services generally

(48,175,230,386,737,877). In 1987, the Delegate

Assembly of the American Bar Association passed

a resolution on home care that said, in part:

Experimentation with case management systems

is widespread, but the current focus on case management centers largely on its potential to control costs.

It may also offer tremendous potential as a tool for

quality assurance and monitoring (19).

Case managers and case management systems do

not automatically monitor and control quality. Case

managers are employed by virtually all the agencies

discussed in this report. Their functions vis-a-vis

quality vary greatly, depending in large part on the

organization, funding, sponsorship, and other characteristics of the agency that employs them. Case

management agencies also differ in all these respects, and their current and potential ability to

control quality of care also differs.

A recent review of the experiences of case

managers in the $10 million National Long-Term

Care Channeling Demonstration illustrates some of

these differences (33).22 The Channeling Demonstration, which was funded by the U.S. Department

of Health and Human Services from 1980 to 1985,

took place in 10 sites: in 5 sites, the case managers

had funds to purchase services, and in 5 other sites ,

they had only very limited funds. Case managers in

21 For further discussion of the issue of who is the client of an agency or program that links people with dementia to semices, s~ ch. 4.

zz~e c~e~g demonstration is discussed further inch. 7.
Chapter S--Concerns About the Quality and Appropriateness of Services ● 197

both types of sites had difficulty monitoring the

quality of homemaker and personal care services

received by their clients. Some sites had contracts

with homemaker/home health aide agencies, and at

those sites, procedures for monitoring quality and

responding to inadequate services were detailed in

the contracts. At sites that did not have contracts

with service providers, procedures for monitoring

quality and responding to problems were less

structured and less formal. Sites that had funds to

purchase services used the threat of withholding

payment to pressure providers into improving their

services. That option was not available to sites that

did not have funds to purchase services.

These findings from the Channeling Demonstration and the discussion earlier in this chapter about

case managers’ role in providing families and others

with information about the quality and appropriateness of services suggest that it is not case managers

or case management per se that can monitor and

control quality but rather case managers in an agency

or service delivery system that has explicit procedures for this purpose. Policymakers should not

assume, therefore, that simply involving case managers in a linking system will automatically guarantee that the linking system will monitor and control

the quality of services.

CONCLUSION

Families and other informal caregivers need

accurate information about the quality and appropriateness of services provided by different agencies

and individuals. In the public debate about services

for people with dementia, the need for better

information about quality and appropriateness has

been overshadowed thus far by concerns about

insufficient availability of services. Anecdotal evidence indicates, however, that some patients and

families who need services do not use them because

they are afraid of poor-quality care. For them,

availability of services is not the only concern.

Books, pamphlets, and articles about services for

people with dementia suggest that caregivers are

responsible for selecting good services and that

information about quality and appropriateness-on

which they could base their selection—is available

from a variety of sources. OTA’s review of those

sources indicates that although the necessary information is sometimes available from many of the

sources, it is not consistently available anywhere.

Moreover, referrals to service providers are sometimes misleading. Patients and families who are

given the name of a service provider—particularly

by a health care or social service professional,

hospital discharge planner, or case manager-may

assume that the referral is a recommendation based

on that individual’s knowledge of available service

options. That assumption may or may not be correct.

To expect families who are severely stressed by

the care of a relative with dementia to call many

individuals to ask for information about quality; to

locate, read, and understand facility inspection

reports; or to correctly guess the basis on which a

referral is made by a physician, discharge planner,

case manager, or other individual is naive. To expect

this of a person with dementia is even more so.

The chapter points out that the development of

criteria to evaluate the quality and appropriateness

of services for people with dementia is probably the

most important step that could be taken to enable a

federally mandated linking system to connect people

with dementia to the best available services. It is not

the function of the linking system to develop such

criteria, however.

Developing comprehensive criteria to evaluate

the quality and appropriateness of services for

people with dementia will take the combined efforts

of government agencies, private agencies, and voluntary associations. It will also take time. In the

meantime, private agencies and voluntary associations could solicit caregivers’ opinions about services they have used for a person with dementia and

make that information available to other people who

are trying to select good services. In addition,

existing regulatory programs could be modified to

collect and make available information that would

be useful to people who are trying to select good

services. Neither of these approaches would result in

comprehensive criteria for evaluating the quality

and appropriateness of services for people with

dementia. These approaches would provide information that is not available now, however, and might

lessen the problems families and others face in

selecting services.

A federally mandated linking system could not

select services for its clients on the basis of the

quality and appropriateness of the services without

criteria for evaluating quality and appropriateness,

but the analysis in this chapter suggests that there are

several types of information the system could
198 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

provide caregivers of people with dementia to help

them select good services. First, and most basic, the

linking system could inform caregivers that there are

differences in the quality and appropriateness of

available services. Second, the system could inform

caregivers about what, if any, information it will

provide about the quality and appropriateness of

services and about any factors that restrict the

system and its employees from giving its clients

accurate information about the quality and appropriateness of services or making referrals on the basis

of quality. Third, the system could inform clients

and their families about which service providers are

licensed, certified, and/or accredited. Fourth, the

system could give caregivers any available information about the quality of services, including, for

example, information compiled by a voluntary

association about families’ and others’ opinions

about services they have used for a person with

dementia. If Congress established a national system

to link people with dementia to services, Congress

could mandate that the linking system provide its

clients with any or all of these types of information.

None of these types of information will solve the

problem of how to ensure that people with dementia

who are not capable of selecting services for

themselves and have no relative or friend to help

them are connected to the best available services. To

solve that problem would require that the linking

system select services for them on the basis of the

quality and appropriateness of the services, which,

as noted above, would require the development of

criteria to evaluate quality and appropriateness. In

the absence of the necessary criteria, Congress could

mandate that the system refer clients only to

licensed, certified, and/or accredited agencies and

service providers; for reasons discussed earlier in

this chapter, however, such a requirement would

probably have only a very limited impact on the

quality and appropriateness of the services these

clients would receive. Congress could require that

the linking system control the quality of services to

which it refers clients by contracting with providers

that meet certain specified standards, but the standards do not exist yet.

The chapter has discussed the need for a thorough

analysis of the legal issues that are raised when an

agency or system that links people to services

provides its clients with information about the

relative quality of available services or selects

services for its clients on the basis of information

about the quality and appropriateness of the services.

If Congress established a national linking system for

people with dementia, Congress could require the

U.S. Department of Health and Human Services to

conduct or contract for such an analysis. Congress

could also immunize the linking system from legal

liability for good faith efforts to disseminate information about the quality of services.

Finally, the chapter recognizes the insufficient

availability of services in general, and the difficult

problems that it creates for anyone trying to arrange

good care. On the other hand, there are some good

services in almost all communities and important

gradations in quality among services that might be

considered adequate. Making available information

about quality supports the providers of good services

and encourages others to improve, even within

existing resource constraints.
Chapter 6

Linking Veterans with Dementia

to VA and Non-VA Services
CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 201

VA HEALTH CARE AND HEALTH-RELATED SERVICES THAT MAY

BE HELPFUL FOR VETERANS WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . 202

Acute Care Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 203

Extended (Long-Term) Care Services . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . 203

Special VA Programs of Particular Relevance for Veterans With Dementia . . . . . . . . 204

VA Education, Training, and Research Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 206

summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 208

PROBLEMS IN LINKING VETERANS WITH DEMENTIA TO VA SERVICES . . . 209

The Complexity of the Eligibility Criteria for VA Services . . . . . . . . . . . . . . . . . . . . . . 210

The Difficulty of Determining Whether a Veteran With Dementia

Will Receive VA Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 213

The Lack of Information About VA Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214

Summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 215

PROBLEMS IN LINKING VETERANS WITH DEMENTIA

TO NON-VA SERVICES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 216

VA Mechanisms for Linking Individual Veterans to Non-VA Services . . . . . . . . . . . . 216

Problems unlinking Individual Veterans to Non-VA Services . . . . . . . . . . . . . . . . . . . 217

VA Mechanisms for Coordinating VA and Non-VA Services . . . . . . . . . . . . . . . . . . . . . 218

Problems in Coordinating VA and Non-VA Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219

Summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220

Boxes

Page

6-A. The Dementia Study Unit at the E.N. Rogers Memorial Veterans Hospital

in Bedford, Massachusetts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 205

6-B. The Alzheimer’s Center- at the VA Medical Center in

Coatesville, Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . 206

6-C. The Wives’ Support Group at the E.N. Rogers Memorial Veterans Hospital

in Bedford, Massachusetts . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . 207

6-D. The ’’Sharing Agreement’’ Between a VA Medical Center and an

Area Agency on Aging in West Virginia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 219

6-E. The VA/AAA Council of the Chicago Area VA Medical Centers

and Three AAAs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220
Chapter 6

Linking Veterans With Dementia to VA and Non-VA Services

INTRODUCTION

The U.S. Department of Veterans Affairs (VA)

operates the largest health care system in this

country (509,837) and provides many of the kinds of

services that may be needed for a person with

dementia. 1 Only a small proportion of elderly

American women are veterans, but, as of 1990, more

than half of all American men over age 65 are

veterans, and by the year 2000 that proportion will

increase to two-thirds (854). The VA is a potential

source of services for them. On the other hand, not

all veterans with dementia are eligible for VA

services, and the VA does not provide all of the kinds

of services that may be needed for a person with

dementia.

Some people believe that the VA should provide

the full range of health care, long-term care, and

other services that are needed for all veterans,

including veterans with dementia. Others believe

that the VA should provide at least all the health care

services that are needed for all veterans. Still others

believe that for financial and other reasons, the VA

should not or cannot provide all needed services for

all veterans; they believe that the VA should

concentrate its resources on providing certain kinds

of services-usually acute medical services-and

that eligibility for VA services should be limited to

certain types of veterans—usually veterans with

service-connected disabilities and veterans with low

income. 2

The debate about what services the VA should

provide and for whom is not the topic of this chapter.

The chapter assumes that although the amount and

kinds of services provided by the VA and the

eligibility criteria for VA services will undoubtedly

change from time to time, it is unlikely for a variety

of reasons that the VA will ever provide all the

services that may be required for all veterans with

dementia. Therefore, many veterans with dementia

will need to use non-VA services as well. The

chapter focuses on problems in the process by which

veterans with dementia are linked to VA services for

which they are eligible and problems in the process

by which they are linked to non-VA providers for

services they cannot obtain from the VA.

Over the past few years, the Office of Technology

Assessment (OTA) has heard complaints from some

families and other informal caregivers of people

with dementia about the difficulty of obtaining VA

services for a veteran with dementia or even finding

out what services are available from the VA for

veterans with dementia. At the same time, OTA has

heard from other families and informal caregivers

about good services provided by the VA for individuals with dementia. Some of the caregivers who

have reported that their relative or friend with

dementia received good services from the VA say

that they “just happened” to learn about the VA

services and that they had not expected that the

services they needed for the person with dementia

would be available through the VA. Conversely,

some families and others who have complained to

OTA about the difficulty of obtaining VA services

for an individual with dementia have reported that

they did expect to receive the services they needed

from the VA, and that they were disappointed and

angry when those services were not available. OTA

has also heard about families of people with

dementia who have experienced long, frustrating

waits during which they did not know whether the

person with dementia would receive needed services

from the VA.

People’s diverse experiences in applying for and

receiving VA services are illustrated in the results of

a 1986 mail survey of families and other informal

caregivers of people with dementia (926) commissioned by OTA for its previous assessment, Losing

a Million Minds: Confronting the Tragedy o f

Alzheimer’s and Other Dementias. Only a few of the

569 caregivers who responded to the 1986 survey

reported that they had ever applied to the VA for

services for their relative or friend with dementia. Of

those that had applied, 45 percent said the person

with dementia did not receive the needed services; in

two-thirds of those cases, the main reason given was

that the individual-although a veteran-did not

have a service-connected disability. For the 55

IFor a list of semi~s that may be needed for a person with dementiaj see table 1-2 inch. 1.

z~e eligibility critefia for VA health care and health-related services are discussed later in this chapter. Veterans with semiee-eonmcted

disabilities-i.e., disabilities that were incurred or aggravated during military service-have priority over other veterans in the reeeipt of VA serviees.

–201–
202 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

percent that did receive VA services, 80 percent of

the caregivers reported the services were good or

excellent; 10 percent reported the services were

average; and 10 percent reported the services were

poor. One caregiver removed the veteran from the

VA facility due to poor care. The survey did not ask

the caregivers whether they had expected that the

individual they were caring for would receive VA

services or how they were linked to the VA services.

This chapter describes the VA health care and

health-related services that may be helpful for an

individual with dementia. In the course of this study,

one OTA staff member visited several VA medical

centers that are providing high-quality services of

various kinds for veterans with dementia, and some

of those services are described. The chapter discusses the reasons why some services that may be

needed for an individual with dementia are not

available from the VA and why some veterans with

dementia are not eligible for VA services. It

describes and analyzes existing problems in linking

veterans with dementia to VA services for which

they are eligible and to non-VA providers for

services they need but cannot obtain from the VA.

Many of the problems discussed in this chapter

have been addressed previously by the VA, the

Senate and House Committees on Veterans’ Affairs,

and others, with respect to services for elderly

veterans (641,820,854,855,859). In the early 1980s,

for example, the VA and Harvard University collaborated in a project to develop options for increased

coordination and sharing of VA and non-VA resources to improve access to appropriate care for

older veterans (721). One product of that collaborative effort, a book entitled Older Veterans: Linking

VA and Community Resources, raises many of the

same problems discussed here with respect to

linking veterans to VA and non-VA services (901a).

Certain aspects of the service needs of people with

dementia and the VA’s eligibility requirements

make these problems particularly difficult for veterans with dementia, however.

According to VA estimates, there are now about

400,000 veterans with dementia (76). Although the

total number of veterans of all ages is decreasing, the

number of older veterans is growing rapidly (854).

Since the prevalence of dementia increases with age,

the growth in the number of older veterans will result

in an increase in the number of veterans with

dementia. The VA estimates that there will be

50,000 new cases of dementia among veterans in

1990, and that the number of new cases of dementia

among veterans will increase to 100,000 per year by

the year 2000, before leveling off (76). By the year

2000, there will be 600,000 veterans with dementia

(76). This large number of veterans with dementia is

likely to create demands on the VA for a variety of

services, and to increase the need for effective

methods of linking veterans with dementia to VA

and non-VA services.

If Congress mandated the establishment of a

national system to link people with dementia to

services, as discussed in this OTA report, the VA

could take one of two possible roles in relation to the

system. On the one hand, the VA could assume the

sole responsibility for linking veterans with dementia to both VA and non-VA services. On the other

hand, the responsibility for linking veterans with

dementia to services could be split between the VA

and the non-VA linking system; if this were done,

the VA would retain the responsibility for linking

veterans with dementia to VA services, and the

non-VA linking system would assume primary

responsibility for linking veterans with dementia to

non-VA services. The pros and cons of these two

options are discussed in chapter 1. This chapter

provides information relevant to evaluating the two

options.

VA HEALTH CARE AND

HEALTH-RELATED SERVICES

THAT MAY BE HELPFUL FOR

VETERANS WITH DEMENTIA

The VA provides health care and health-related

services through the Veterans Health Services and

Research Administration (VHS&RA), previously

called the Department of Medicine and Surgery.

Administratively, the VHS&RA encompasses 7

Regions, 27 Districts, and 172 VA medical centers

(676). Through the VHS&RA, the VA provides

acute and extended (long-term) care services for

veterans in VA hospitals, nursing homes, domiciliary care facilities, outpatient clinics, and in the

veteran’s home. Also through the VHS&RA, the VA

pays for acute and extended-care services for veterans in non-VA hospitals, nursing homes, and board

and care facilities and through non-VA physicians

and other health care professionals. In fiscal year

1987, 1.4 million veterans were treated in VA

hospitals, nursing homes, and domiciliary care
Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services ● 203

facilities, and 19.8 million veterans were treated on

an outpatient basis by VA staff (857). In that same

year, the VA paid for the treatment of 94,000

veterans in non-VA hospitals, nursing homes, and

board and care facilities and for 1.8 million outpatient visits to non-VA physicians and other health

care professionals.

This section describes the health care and healthrelated services provided or paid for by the VA that

may be helpful for veterans with dementia. In

addition to providing and paying for health care and

health-related services, the VA also provides education and training for health care professionals and

pays for biomedical and health services research.

Some of the VA’s training and research initiatives

that pertain to dementing diseases and the care of

people with dementia are also described.

Not all the services described in the following

sections can be obtained by all veterans with

dementia for a variety of reasons discussed later in

this chapter. These reasons include the eligibility

criteria for the services and the lack of sufficient VA

services in relation to the large number of veterans

who need them. In addition, most VA health care and

health-related services are furnished at the 172 VA

medical centers. As a result, VA services are, in

practice, more readily accessible by veterans who

live near one of the medical centers than by other

veterans. VA services that are only provided by

certain VA medical centers are more readily accessible by veterans who live near those centers.

Acute Care Services

Acute medical care in the VA is provided by 172

VA hospitals, 235 VA outpatient clinics, and numerous non-VA hospitals and physicians (815,837). For

veterans with dementia, inpatient and outpatient

acute medical services are important for the management of acute illnesses and acute episodes of chronic

illnesses, both of which can exacerbate the cognitive

deficits caused by a dementing illness. Acute care

facilities and services are also important for diagnosis and assessment. VA hospitals and outpatient

clinics typically employ physicians with the medical

specialties that may be needed to diagnose diseases

that cause dementia. In addition, VA hospitals and

outpatient clinics employ many other health care

professionals, including nurses, psychologists, social workers, and other therapists, who frequently

function as a multidisciplinary team and do or could

provide comprehensive, multidisciplinary assessments for veterans with dementia.

Extended (Long-Term) Care Services

A variety of long-term care services, called

‘‘extended-care” services in the VA, are available at

many VA medical centers. Most of these extendedcare services are provided in institutional settings,

such as nursing homes and domiciliary care facilities, but some are provided in noninstitutional

settings. Both types of extended-care services are

potentially helpful for some veterans with dementia.

Institutional Extended-Care Services

The VA provides or pays for institutional extendedcare services that may be helpful for veterans with

dementia through at least five programs. One of

these programs provides extended hospital care in

intermediate medical care beds-i. e., VA hospital

beds that are used for veterans who require less than

hospital and more than skilled nursing care. A

second program, the VA nursing home program,

provides skilled nursing care in VA nursing homes.

In fiscal year 1989, this program served over 27,000

veterans in 118 VA nursing homes (837). The VA

nursing homes had a total of 12,530 beds and an

average daily census of 11,500.

A third program that provides institutional extendedcare services for veterans is the community nursing

home program, which permits each of the 172

medical centers to place veterans in non-VA nursing

homes that provide either skilled or intermediate

level care under contract with the VA. In fiscal year

1989, 3,675 community nursing homes cared for

32,000 veterans through this program (837). The

average daily census was 9,305.

A fourth program that provides institutional

extended-care services is the domiciliary care program that is intended for ambulatory veterans who

need health-related services but do not require

hospitalization or the skilled or intermediate level of

care provided in the VA or community nursing home

programs. In fiscal year 1989, 18,000 veterans

received care in the VA’s 29 domiciliary care

facilities, which had an average daily census of

6,000 (837).

Finally, institutional extended-care services are

provided by State Veterans’ Homes that receive a per

diem grant from the VA for the care of eligible

veterans. State Veterans’ Homes can also receive
204 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

VA grants to build or acquire new facilities; funding

is available for up to 65 percent of construction

costs. In fiscal year 1989, there were 55 State

Veterans Homes in 36 States (837). These State

Veterans Homes had a total of 19,000 beds, including nursing home and domiciliary care beds, as well

as some hospital beds.

Noninstitutional Extended-Care Services

The VA provides or pays for three programs that

offer noninstitutional extended-care services that

may be helpful for some veterans with dementia:

hospital-based home care, adult day health care, and

community residential care. The hospital-based

home care program provides in-home medical,

nursing, rehabilitative, and other services for homebound veterans. A multidisciplinary team furnishes

the services and manages the veterans’ care. The

hospital-based home care program is highly medical

in orientation; the provision of nonmedical support

services is not permitted as part of the program. In

fiscal year 1989, 72 of the 172 VA medical centers

had hospital-based home care programs, and 15,700

veterans were served by these programs (837).

The adult day health care program was established as a demonstration program by Public Law

98-160 and provides a ‘‘medical model’ of adult

day services (508,837). The program, which first

admitted patients in 1985, provides health care,

health maintenance, and rehabilitative services for

veterans. In fiscal year 1989, 15 VA medical centers

were operating adult day health centers with a total

average daily census of 318 (837). In addition, 22

VA medical centers were authorized to contract with

community agencies for adult day health care

services for veterans, and a total of 396 veterans

received contracted adult day health services (837).

Lastly, the community residential care program

provides room, board, personal care, and supervision

to veterans who are not in need of hospital or nursing

home care but who cannot live independently.

Typically these veterans do not have an informal

caregiver. After the VA locates a suitable home and

the veteran is placed, VA social workers and nurses

provide in-home treatment and case management. In

fiscal year 1989, 127 of the 172 VA medical centers

had a community residential care program, and the

programs provided placement for 11,100 veterans in

2,900 homes (837,917).

Special VA Programs of Particular Relevance

for Veterans With Dementia

In addition to the acute and extended-care services

just described, some VA medical centers have other

programs that are particularly relevant for veterans

with dementia and their caregivers. The programs

are Geriatric Research, Education, and Clinical

Centers; Geriatric Evaluation Units; special care

units for veterans with dementia; respite care;

caregiver support groups; and special informational

materials.

Geriatric Research, Educational, and Clinical

Centers (GRECCS) were begun in 1975 to provide

basic and clinical research and education and

training for clinicians and researchers in the field of

geriatrics. Each GRECC focuses on specific areas in

geriatric medicine and typically provides care for

veterans with diseases and conditions in those areas.

As of 1989, there were 10 fully operational

GRECCs, four of which were caring for at least

some veterans with dementia (76). The sites for two

additional GRECCs were selected in 1989, and the

two sites received partial funding in that year

(8,837).3 For more than 10 years, the GRECC at the

E.N. Rogers Memorial Veterans Hospital, in

Bedford, Massachusetts, has been providing inpatient and outpatient care for veterans with dementia

through its Dementia Study Unit. Box 6-A describes

the services provided by the Dementia Study Unit.

Geriatric evaluation units (GEUs) are hospital

units that use a multidisciplinary team to assess

elderly veterans and develop a coordinated plan of

care for them. GEUs and their counterparts in

non-VA hospitals are discussed in chapter 8, and the

GEU at the VA Medical Center in Sepulveda,

California, is described in box 8-Kin chapter 8. As

of 1989, there were 87 GEUs in VA hospitals

nationwide (917).

GEUs usually consist of a group of VA hospital

beds, typically from 4 to 20, that are set aside for

comprehensive patient assessment. The objective of

a GEU is to refine the diagnosis, treatment, and

placement plans for older veterans, particularly

those with multiple chronic diseases, remediable

impairments, or psychosocial problems. The evaluation can take from 1 to 2 weeks or longer, depending

on the complexity and severity of the veteran’s

3AltlKN@I tie total n~er of authorized GRECCS is 25, funds have been appropriated for Ody 12 G~CCS (8,508).
Chapter 6-Linking Veterans With Dementia to VA and Non-VA Services ● 205

Box 6-A—The Dementia Study Unit at the E.N. Rogers Memorial Veterans Hospital

in Bedford, Massachusetts

The Dementia Study Unit of the Geriatric Research, Education, and Clinical Center at E.N. Rogers Memorial

Veterans Hospital provides inpatient and outpatient care for veterans with dementia and information and support

for their caregivers. The Dementia Study Unit operates three 25-bed wards and is able to serve 75 veterans on an

inpatient basis. The unit has an outpatient caseload of about 40 veterans.

Many of the veterans served by the Dementia Study Unit have been diagnosed at one of the large teaching

hospitals in Boston or by a private physician but have not received any followup care from those sources. According

to the Dementia Study Unit’s social worker, the caregivers of these veterans typically manage without assistance

for as long as they can and are often physically and emotionally exhausted by the time they reach the VA. Since

the VA is the last place these caregivers turn for help, many of them are seeking inpatient long-term care. They are

encouraged to keep the veteran with dementia at home for as long as possible, however.

When the veteran and his or her caregiver are first seen at the Dementia Study Unit, a multidisciplinary

team---inc1uding a neurologist, a nurse, and a social worker-- conducts a complete assessment. The neurologist

performs a diagnostic evaluation. The nurse assesses the veteran’s physical limitations and functioning, and the

social worker conducts a psychosocial evaluation. The assessment is almost always conducted on an outpatient

basis. It usually involves several interviews with the caregiver and may involve a home visit.

After the assessment, the veteran and his or her caregiver generally return to the VA for regularly scheduled

outpatient visits during which the staff reassesses the veteran’s condition and provides information, support, and

counseling for the caregiver. These visits also help familiarize caregivers with the inpatient setting and prepare them

for the likely institutionalization of the patient later on.

In between scheduled outpatient visits, the social worker maintains telephone contact with the caregivers, and

the caregivers are encouraged to call the Dementia Study Unit as the need arises. The social worker considers his

main role to be expanding the caregivers’ knowledge about dementia, informing them about available services, and

helping them improve their coping skills. The social worker circulates a newsletter that contains information about

VA and non-VA services. He also assists caregivers in arranging services.

The Dementia Study Unit provides respite care for veterans treated on an outpatient basis. The veterans and

their caregivers may use up to 2 weeks of respite care once every 3 months.

Eventually, many of the veterans who are seen as outpatients are admitted to one of the inpatient wards as

long-stay residents. For these veterans, the Dementia Study Unit provides medical and nursing care; physical,

occupational, recreational, and music therapy; dental care; exercise programs; and other services. Support groups

are provided for the caregivers of inpatients and outpatients. The ‘‘Wives Support Group” run by the Dementia

Study Unit is described in box 6-C.

SOURCES: J. Larkin clinical social worker, Geriatric Research, Education and Clinical Center, E.N. Rogers Memorial Veterans Hospital,

Bedford, MA, personal communications, Aug. 3, 1988, and July 14, 1989; B. Seltzer, associate director for clinical services,

Geriatric Research, Education, and Clinical Center, E.N. Rogers Memorial Veterans Hospital, Bedford, MA, personal

communication Aug. 3, 1988; L. Volicer, K. Fabiszewski, Y. Rheume, et al., Clinical Management of Alzheimer’s Disease

(Rockville, MD: Aspen Publications, 1988).

condition. GEUs often provide comprehensive as- that most veterans who are admitted to special care

sessments for veterans with dementia, but some

GEUs do not admit veterans with severe, irreversible

dementia, especially if the veterans’ dementia has

been diagnosed and evaluated previously (394,869).

VA special care units are inpatient care settings

for veterans with Alzheimer’s disease and other

dementing diseases. It is estimated that about 40 VA

medical centers have special care units. Typically

these units are comprised of intermediate medical

care beds in a VA hospital. In 1985, VA special care

units ranged in size from 18 to 46 beds (855).

Evidence from several special care units indicates

units remain there for the rest of their lives due to the

general debilitated state of the veteran and the

typically overburdened status of the caregiver at the

time of admission (82,751). On the other hand, as

discussed below, some and perhaps many VA

special care units use certain beds on the unit for

short-term respite care for veterans with dementia.

Box 6-B describes the special care unit at the VA

Medical Center in Coatesville, Pennsylvania.

Respite care was offered by approximately 100

VA medical centers as of 1989 (837). In the VA,

respite care is strictly limited to an institutional
206 . Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 6-B—The Alzheimer’s Center at the VA Medical Center in Coatesville, Pennsylvania

The Alzheimer’s Center at the VA Medical Center in Coatesville, Pennsylvania, is the largest VA special care

unit for veterans with dementia. The special care unit has 91 beds on 2 wards. The nursing staff consists of 13 RNs,

6 LPNs, 34 nursing assistants, and a nursing supervisor. Two physicians and one physician assistant provide medical

care for residents on the two wards.

The special care unit--like other VA special care units--is usually filled to capacity and has a waiting list.

Admission to the unit almost always comes through the VA Medical Center’s geriatric evaluation unit. The great

majority of residents on the unit are male veterans, but as of May 1989, two of the residents were female veterans.

One end of each ward is reserved for veterans with advanced conditions who are confined to a bed or a chair.

The special care unit provides many services in addition to nursing and medical care, e.g., occupational

therapy, speech therapy, music therapy, pet therapy, and exercise programs. It has an outdoor fenced-in area that

residents are encouraged to use, and many of the residents participate in a horticulture program where they take care

of plants and make floral arrangements.

Residents of the special care unit who are ambulatory can take advantage of special outings--such as a May

1989 fishing trip. The unit also has activities that include family members, such as a Father’s Day picnic held in

June 1989.

The resident’s wives and other family members are encouraged to join the family support group that meets once

a month for educational presentations and gives family members an opportunity to share their experiences and

feelings with one another. Many of the residents’ wives also perform volunteer activities on the special care unit.

. Sometimes veterans are transferred from the Alzheimer’s Center to the VA hospital for acute medical cam.

Since the special care unit is located in the VA medical center, transfers back and forth to the hospital can be

accomplished with greater ease than they can in the non-VA health care sector.

SOURCES: L. Swingler, medical social worker, Alzheimer’s (kiter, VA Medical Center, Coatesville, PA, personal communication, May 23,

1989, c. Curato, ward secretary, Alzheimer’s Center, VA Medical Center, Coatesville, PA, personal communication, May 24, 1989;

L. Bristol, Alzheimer’s Center supervisor, VA Medical Center, Coatesville, PA, personal communication, May 26, 1989.

setting, i.e., a VA hospital or nursing home. The Other VA medical centers have support groups for

respite care is intended to provide short-term care for

the veteran in order to relieve his or her primary

caregiver. Each veteran can receive a maximum of

30 days annually, with each admission limited to a

maximum of 14 days.

OTA does not know how many VA respite

programs serve veterans with dementia, but VA

officials report that the implementing guidelines do

not preclude serving veterans with dementia (480).

At least one respite program designed specifically

for veterans with dementia was instituted at the Palo

Alto VA Medical Center in 1979 (64). The Dementia

Study Unit at the GRECC in Bedford, Massachusetts, described in box 6-A, and the special care unit

at the Coatesville, Pennsylvania VA Medical Center, described in box 6-B, both provide institutional

respite care for veterans with dementia.

Support groups for spouses and other caregivers

of veterans with dementia are provided by some VA

medical centers. Box 6-C describes a meeting of the

Wives Support Group run by the Dementia Study

Unit at the GRECC in Bedford, Massachusetts.

caregivers of veterans with all kinds of disabilities.

Still other VA medical centers encourage caregivers

to participate in an Alzheimer’s Association or other

non-VA support group. These support groups afford

the caregivers an opportunity to share their experiences in coping with the illness and to give and

receive emotional support from the other caregivers.

Some VA medical centers have developed special

informational materials for caregivers of veterans

with dementia. One example is the VA Medical

Center in Minneapolis, Minnesota, which has developed a series of booklets on topics of importance to

caregivers of veterans with dementia, including

“What is Alzheimer’s Disease?” “The Role of the

Caregiver, " “Managing From Day-to-Day,” and

‘‘Working With Bureaucracies.’

VA Education, Training, and

Research Programs

In addition to providing and paying for health care

and health-related services for veterans, the VA’s

VHS&RA also has two other functions: providing

education and training for health care professionals
Chapter 6-Linking Veterans With Dementia to VA and Non-VA Services ● 207

Box 6-C---The Wives’ Support Group at the E.N. Rogers Memorial Veterans Hospital

in Bedford, Massachusetts

One OTA staff member attended the August 3,1988 meeting of the Wives’ Support Group run by the Dementia

Study Unit at the E.N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts (see box 6-A). At the time

of the meeting, with one exception, each of the husbands of the women who attended the meeting were long-stay

residents of the Dementia Study Unit’s inpatient wards. The remaining husband was enrolled in the Dementia Study

unit’s outpatient program and was being cared for at home by his wife, awaiting an opening on one of the inpatient

wards.

Of all the many stories that unfolded during the meeting of the Wives’ Support Group, the most striking was

the similar scenario portrayed by each woman of her experience seeking help in the non-VA health care sector,

which eventually ended with her finding out about the VA’s special Alzheimer’s program completely ‘‘by

accident. Before finding out about the VA program, all but one of the wives had taken their husbands to the family

doctor and were referred to a neurologist. All the wives said that after the neurologist confirmd the Alzheimer’s

diagnosis, they did not receive any information about what to do from there. One woman stated that she was actually

relieved by the diagnosis, but they all admitted that Alzheimer’s was a difficult disease to come to terms with, and

many said they felt ‘abandoned’ by the non-VA health care system.

The wives’ stories about how they found out about the VA’s special Alzheimer’s program all included the

common theme of having found the program ‘‘by accident. One woman said that, by chance, she saw a TV

program that mentioned the VA program. Another heard about the VA through a friend. A third woman had a

daughter who had worked previously at the Bedford VA hospital, and another had seen a TV Guide listing on a

memory program that talked about the Geriatric Research, Education, and Clinical Center at the VA hospital. Only

one woman had learned about the program by contacting the VA directly.

As noted above, only one member of the support group was still caring for her husband at home. She said that

she was dependent on the support group for reassurance and could not imagine having to go through any more of

the ‘ordeal’ without the help of the support group. At one point, she tearfully explained how frightened she is when

her husband, who is apparently much larger than she, becomes confused and agitated-all the while not hewing

who she is. All the other wives understood.

Another wife of a World War I veteran attempted to explain the tremendous guilt she felt when her husband

was still at home and she needed help. She said she did not feel that she should ‘‘bother’ her children to give her

a hand Now, years later, she still feels guilty, despite the fact that her daughter, who attended the meeting with her,

assured her that all her children wanted to help.

The wives agreed that since they found the VA program, they were “saved” from an “awful” existence. The

program offered them the solace, advice, coping mechanisms, and the services they needed to survive the time that

their husbands were outpatients. The VA program gradually acquainted them with the inpatient unit and gave them

a comfortable familarity when the time came to admit their husbands to the inpatient wards.

SOURCE: Wives Support Group, Geriatric Research, Education, and Clinical Center, E.N. Rogers Memorial Veteran Hospital, Bedford, MA,

Aug. 3, 1988.

and sponsoring medical research. These two func- ing about half of the physicians in this country,

tions are important for veterans with dementia

because some of the education and training and

research programs focus on Alzheimer’s and related

dementias.

The VA conducts the largest education and

training effort for health professionals in the United

States and is the principal training resource in

geriatric medicine (854,857). Annually, through

affiliations with over 1,000 educational institutions,

including schools of medicine, nursing, and other

health professions, about 100,000 students, includreceive some or all of their clinical training through

the VA (507).

In fiscal year 1988, the VA supported about 8,350

full-time medical residency positions, with geriatrics among the areas receiving special emphasis

(76). A significant number of nursing students

receive VA scholarships for training in geriatric/

gerontological nursing (831). Many of these individuals have contact with dementia-specific programs

and/or veterans with dementia.
208 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Photo credit: Gretchen Kolsrud

The VA Medical Center in Minneapolis, Minnesota, has developed a series of informational booklets for caregivers of

people with dementia.

As noted earlier, GRECCs provide training for

clinicians in the field of geriatrics. The VA Interdisciplinary Team Training Program in Geriatrics also

provides clinical training in geriatrics for students in

various health disciplines, such as nursing, psychology, and social work, to develop knowledge and skills

in providing interdisciplinary team care. In 1988, the

Interdisciplinary Team Training Program in Geriatrics funded support for almost 200 health professionals from various disciplines (76).

The VA’s Office of Research and Development in

the VHS&RA each year funds over 4,000 researchers with a budget of approximately $200 million

(76). For fiscal year 1988, over $2.6 million of the

VA’s total research budget was devoted to research

pertaining to dementia. In addition, VA researchers

reported receiving another $2.9 million for dementiarelated projects from non-VA sources.

Summary and Implications

The preceding section has described many VA

services that may be helpful for veterans with

dementia and their caregivers, including some services specifically designed for veterans with dementia. That these services exist highlights the importance for veterans with dementia and their caregivers

of effective methods by which they can be linked to

VA services for which they are eligible.

On the other hand, the information just presented

makes it clear that the VA does not provide all the

services that may be needed for veterans with

dementia. Certain services, e.g., in-home respite

care, are not provided by the VA at all. Other

potentially helpful services are provided by some

VA medical centers and not others. As of 1989, for

example, approximately 100 of the 172 VA medical

centers provided institutional respite care, and 15 of
Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services ● 209

the 172 centers had adult day health care programs.

One reason for the differences among VA medical

centers in the services they provide is that VA

medical centers have some discretion about which

services they provide.4 Institutional respite care is a

service that each VA medical center has the option

to provide. Another reason for the differences among

VA medical centers in the services they provide is

that Congress, faced with budget constraints, sometimes authorizes and/or funds the provision of

certain services at only a few VA medical centers.

Adult day health care is a program that only a few

VA medical centers are authorized to provide.

The great majority of VA health care and healthrelated services are provided at VA medical centers,

which means that the services are more readily

accessible by veterans who live near one of the

medical centers. The 172 VA medical centers are not

uniformly distributed across the country, and some

have very large catchment areas (662,724). As a

result, some veterans and their caregivers have to

travel long distances to access VA services, and

some may not be able to access VA services

(481,662,823). This problem is exacerbated when

the needed services are not provided by the nearest

VA medical center.

As noted earlier, some people believe that the VA

should provide more services of various kinds, and

other people believe that the VA cannot or should

not provide more services. This OTA assessment

does not address the question of what services the

VA should provide. In the context of this assessment, the fact that the VA does not provide all the

services that may be needed for veterans with

dementia points to the importance of effective

methods by which veterans with dementia can be

linked to non-VA services. The fact that some

veterans live too far from a VA medical center to

access VA services underscores the importance of

those methods.

Many of the extended-care services provided by

the VA are institutional or residential in nature. With

respect to the care of elderly veterans in general, the

VA has been criticized for overemphasizing institutional services and underemphasizing in-home and

other noninstitutional services (8,48 1,509,662). These

same criticisms are generally relevant to the care of

many veterans with dementia. On the other hand,

institutional and residential care services are appropriate for some veterans with dementia who have no

relative or other informal caregiver to help them and

for some veterans with dementia whose relatives and

friends are unable to take care of them.5 That the

VA provides primarily institutional and residential

extended-care services emphasizes the importance

of effective methods of linking veterans with dementia who need such services to the VA and, conversely, the importance of linking veterans with

dementia who need services not available from the

VA to non-VA service providers.

The VA is sometimes also criticized for overemphasizing medically oriented services and underemphasizing nonmedical, supportive services (8). Veterans with dementia need both medical and nonmedical services. Some people believe that the VA

should provide more nonmedical, supportive services. In the context of this OTA assessment, however, the fact that the VA provides more medically

oriented services reinforces the need for effective

methods of linking veterans with dementia who need

such services to the VA and effective methods of

linking veterans with dementia who need nonmedical, supportive services to non-VA providers if these

services are not available from the VA.

PROBLEMS IN LINKING

VETERANS WITH DEMENTIA

VA SERVICES

Some people, including some veterans and their

families, believe that the VA will provide all the

health care and long-term care services the veteran

needs and that the veteran will be able to obtain these

services simply by virtue of the fact that he or she is

a veteran. The preceding section pointed out that

some of the services that maybe needed for veterans

with dementia are not available from the VA at all or

4The VA’s pl arming process (called Medical District Initiated Program Planning-MEDIPP) allows each VA medical center some degree of

discretion about the type and amount of services it will offer. The MEDIPP process then coordinates the individual medical centers’ plans at the disirict

level.

s~resw= t. ~on=ssio~ rqests and a man&te of public L,aw 99-576, the VA prepared a ~pOll on “Alternativ~ to rnstitutio~ cme~” ‘tich

was presented to Congress in January 1988 (860). The report describes the VA’s noninstitutional services for elderly veterans and veterans with chronic

mental illness, including various pilot and demonstration projects intended to evaluate the effectiveness of noninstitutional services for these patient

groups. The report points out the importance of institutional care for some types of veterans.
210 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

are only available from certain VA medical centers.

This section discusses problems in linking veterans

with dementia to services that are available from the

VA. The discussion focuses on the complexity of the

eligibility criteria for VA services, the difficulty of

determining g whether a veteran with dementia will

receive VA services, and the lack of accurate

information about what services are available. All

three of these problems are frustrating for families

and others who are trying to plan and arrange

services for a veteran with dementia.

The Complexity of the Eligibility Criteria

for VA Services

In 1986, Congress passed Public Law 99-272,

which substantially revised the eligibility criteria for

VA health care and health-related services. The law

specified three categories of veterans—"A," ‘‘B,”

and ‘ ‘C’ ‘—for the purposes of eligibility determination. The law mandated a means test for certain

veterans and certain services and, for the first time,

required the VA to provide hospital care for certain

veterans. In 1988, Congress passed Public Law

100-322, which further revised the eligibility criteria

for outpatient care. The resulting criteria are extremely complex. Although the eligibility criteria for

VA services can be and frequently are summarized

in one or two paragraphs, such a summary fails to

convey a true sense of their complexity. Since that

complexity is one of the major problems in linking

veterans with dementia to VA services, the eligibility criteria are described in greater detail here.

The three categories of veterans specified by

Public Law 99-272 are as follows:

Category A includes any veteran who:

●

●

●

●

●

●

has a service-connected disability;

is a former prisoner of war;

served during the Spanish-American War, Mexican border period, or World War I;

may have been exposed to certain toxic substances while on active duty in Vietnam;

may have been exposed while on active duty to

ionizing radiation from nuclear testing or

participation in the American occupation of

Hiroshima or Nagasaki, Japan;

has an income below $15,833 for a single

veteran and $18,999 for a married veteran, plus

$1,055 for each additional dependent6;

• is eligible for Medicaid; or

● receives a VA pension.

Category B includes any veteran who does not

have a service-connected disability, does not meet

the other criteria for category A, and has an annual

income between $15,833 and $21,110 for a

veteran with no dependents and between $18,999

and $26,388 for a veteran with dependents.

Category C includes any veteran who does not

have a service-connected disability, does not meet

the other criteria for category A, and has an annual

income over the category B amounts.

Determining g whether a veteran is eligible for and

will receive a service is complicated not because of

the three categories just listed, but because of other

factors that affect the determination. One of the

factors is whether the condition for which the

veteran needs treatment or services resulted from

military duty (i.e., whether the condition is serviceconnected). Another factor is what services the

veteran needs. The VA is required to provide certain

services for certain veterans, as discussed below, but

most services for most veterans must be provided

only on a‘ space available basis. Thus, the services

are not an entitlement; a veteran’s eligibility for

them is not absolute but, instead, depends on

whether there is “space available” in the service

program (641,741). As a result, a given veteran

might be determined to be eligible for and receive a

given service from one VA medical center that had

‘‘space available’ but not from another VA medical

center that did not have “space available. ” Lastly,

the eligibility criteria for regular VA services are

sometimes waived for services provided as part of a

research or demonstration program. The following

sections describe the eligibility criteria for many of

the kinds of services described earlier in this chapter

as potentially helpful for veterans with dementia.

Hospital Care

Public Law 99-272 required that the VA provide

free hospital care for any category A veteran who:

. is being treated for a service-connected disability;

. has a service-connected disability and is being

treated for any disability;

%e dollar figures in this seetion are for 1988. The figures for subsequent years are adjusted in the same manner as VA pensions.
Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services ● 211

was discharged or released from active duty due

to a disability incurred or aggravated in the line

of duty and is being treated for any disability;

has a disability resulting from VA treatment or

the pursuit of vocational rehabilitation and is

being treated for any disability;

has a service-connected disability rated at 50

percent or more and is being treated for any

disability;

is a former prisoner of war and is being treated

for any disability;

served in the Spanish-American War, Mexican

border period, or World War I and is being

treated for any disability;

may have been exposed to certain toxic substances while on active duty in Vietnam or to

ionizing radiation from nuclear testing or participation in the American occupation of Hiroshima or Nagasaki Japan, and is being treated for

a condition possibly related to that exposure; or

has a nonservice-connected disability and is

unable to defray the cost of medical care,

including:

a. veterans who receive VA pensions,

b. veterans who are Medicaid eligible, and

c. veterans with yearly incomes below $15,833

for a single veteran and $18,999 for a married

veteran, plus $1,055 for each additional

dependent.

All other veterans may be eligible for VA hospital

care at the discretion of the VA medical center and

if there is space is available. Category B veterans

may be eligible for flee hospital care if there is space

available. Category C veterans may be eligible for

hospital care if there is space available and if they

pay a deductible. In 1988, the deductible was $540

for the first 90 days, and $270 for each subsequent

90-day period up to a maximum of $1,350 a year (76).

Outpatient Care

Public Law 100-322 required that the VA provide

outpatient care for any category A veteran who:

●

●

●

is being treated for a service-connected disability,

has a service-connected disability rating of 50

percent or more, or

is disabled as a result of VA treatment or in

pursuit of vocational rehabilitation (817).

Public Law 100-322 further required the VA to

provide, as medically indicated, outpatient services

in preparation for, as followup to, or to obviate the

need for, hospital admission for any veteran who:

● has a 30 percent or 40 percent disability rating,

or

● has an annual income below $9,940 (a figure

that is increased by $1,055 for each dependent

and is adjusted annually) (817).

The VA may provide outpatient care for some

other veterans in preparation for, in followup to, or

to obviate the need for hospital admission in the

following order of priority.

Priority Group I: any category A veteran who:

1. has a service-connected disability rated at less

than 30 percent or needs a compensation or

pension examination;

2. is a former prisoner of war or was exposed to

toxic substances in Vietnam or ionizing radiation from a nuclear explosion;

3. served in World War I or the Mexican border

period or is receiving an “aid and attendance”

pension or a similar VA pension; or

4. has income greater than $9,940 and less than

the category A threshold (e.g., $15,833 for

single veterans) (817).

Priority Group II: any category B veteran.

Priority Group III: any category C veteran who

agrees to pay a copayment of $25 per visit.

Nursing Home Care

Nursing home care is a discretionary benefit that

may be given to all veterans to the extent that space

and finding are available as long as it is given in

the following priority order:

Priority Group I: any category A veteran who:

1. has a service-connected disability and is being

treated for any condition;

2. was discharged or released from active duty

due to a disability incurred or aggravated in the

line of duty and is being treated for any

condition;

3. has a disability resulting from VA treatment or

in pursuit of vocational rehabilitation and is

being treated for any condition;

4. is a former prisoner of war and is being treated

for any condition;
212 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

5.

6.

7.

may have been exposed to certain toxic substances while on active duty in Vietnam or to

ionizing radiation from a nuclear test or participation in the American occupation of Hiroshima or Nagasaki, Japan, and is being treated

for a condition possibly related to that exposure;

served in the Spanish American War, the

Mexican border period, or World War I and is

being treated for any condition;

has a nonservice-connected disability and is

unable to defray the cost of medical care

otherwise, including:

a. veterans who receive VA pensions,

b. veterans who are Medicaid eligible, and

c. veterans with yearly incomes below $15,833

for a single veteran and $18,999 for a married

veteran, plus $1,055 for each additional

dependent.

Priority Group II: any category B veteran.

Priority Group III: any category C veteran who

agrees to pay the deductible.

Care in a VA nursing home is free for veterans in

priority groups I and II. Veterans in priority group III

must pay a copayment. Length of stay in a VA

nursing home is not restricted for veterans in any of

the three priority groups. Veterans in any of the three

groups can be admitted to a VA nursing home from

their home, a hospital, or a residential care setting.

Care in a non-VA nursing home through the VA’s

community nursing home program (described in the

previous section) is also free for veterans in priority

groups I and II. Veterans in priority group III must

pay a copayment. Length of stay in a non-VA

nursing home is not restricted for veterans being

treated for a service-connected disability and veterans who were previously hospitalized primarily for

the treatment of a service-connected disability. For

all other veterans, care in a non-VA nursing home is

restricted to 6 months, and many VA medical centers

limit the allowed length of stay to 2 to 3 months.7

Except for veterans being treated for serviceconnected disabilities, veterans admitted to a nonVA nursing home through the community nursing

home program must be admitted from a VA hospital.

This requirement sometimes poses a problem for

veterans with dementia who need nursing home

care: the problem arises because VA hospitals may

not consider a cognitive impairment alone as a

sufficient reason for hospital admission, and veterans with dementia may not have an acute illness or

another condition that would justify hospital admission.

Domiciliary Care

Veterans who need domiciliary care can qualify if

their annual incomes are below the ‘‘aid and

attendance’ pension level-$9,940 for the veteran

without dependents (a figure that is increased by

$1,055 for each dependent and is adjusted annually),

or if, as determined by the Secretary, they have no

adequate means of support. In clarifying these

eligibility criteria, the conferees for the Veterans’

Benefits and Services Act of 1988 stated that

veterans with service-connected disabilities should

be given first priority and that income alone should

not be used to deny them eligibility for domiciliary

care (817).

Eligibility Criteria for Other VA Programs

VA research and demonstration programs and

some other VA programs often provide services for

veterans who would not necessarily be eligible for

VA services under the general eligibility criteria.

With respect to GRECC programs, for example, a

veteran whose situation “fits” into the research

being conducted by the GRECC can be admitted to

the program, regardless of whether the veteran meets

other eligibility criteria. In order to qualify for the

inpatient and outpatient care provided by the Dementia Study Unit at the GRECC in Bedford,

Massachusetts (see box 6-A), a veteran must have a

diagnosis of Alzheimer’s disease (440). If this

criterion is met, the veteran can be admitted into the

program and receive free services whether or not he

or she has a service-connected disability or a

qualifying income level. Likewise, VA special care

units can admit veterans on the basis of their

diagnosis or condition, independent of the general

eligibility criteria for VA hospital or nursing home

care.

Situations like these in which the general eligibility criteria for VA services are not strictly applied

add to the complexity of VA eligibility criteria.

7A vet- ~th demen~ who ~5 a semicecomwt~ distiifi~ unrelated to the dementia would not qualify fOr unrestricted nursing home c~e in

anon-VA nursing home unless the care were needed for the veteran’s service-connected disability.
Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services ● 213

Although one would not want to require VA research

and demonstration programs and other special programs to admit only veterans who meet the general

eligibility criteria for VA services, it is easy to

understand why the existence of completely different sets of eligibility requirements for apparently

similar services might be confusing for families and

others who are trying to locate and arrange services

for a veteran with dementia.

The Difficulty of Determining Whether

a Veteran With Dementia Will Receive

VA Services

The complexity of the eligibility criteria for VA

services--especially as the criteria interact with the

factor of “space availability ’’-make it difficult to

determine whether a veteran with dementia will

receive VA services. With the exception of the

hospital and outpatient services that the VA is now

mandated to provide for some veterans, most VA

services, including the extended-care and special

services discussed earlier in this chapter, are provided on a “space available” basis. Since the

availability of specific kinds of VA services usually

cannot be known with certainty much before the

time when the services are to be used, it may be

difficult, if not impossible, for families and other

informal caregivers to know in advance whether a

veteran with dementia will receive the services.

The factor of space availability is important in

determining g whether veterans with all kinds of

disabilities will receive VA services, but it may be

especially important for veterans with dementia. As

is obvious from the preceding review of the eligibility criteria for VA services, veterans with serviceconnected disabilities have the highest priority for

VA services. Since most diseases that cause dementia occur late in an individual’s life, long after he or

she is discharged from military service, dementia is

seldom considered a service-connected disability

(724). Some veterans with dementia have another

service-connected disability or meet one of the other

previously listed criteria that give an individual high

priority for receiving VA services. For veterans with

dementia who do not meet any of these criteria (e.g.,

all category B and C veterans), space availability is

a major factor determining whether they will receive

VA services.8

The availability of VA services is affected by both

the supply of and the demand for services. The

supply of all VA services depends on the funds

available to the VA as a whole and to individual VA

medical centers. The supply of specific kinds of

services depends on decisions at the national,

district, and individual VA medical center level in

regards to which services will be funded. The

demand for VA services depends on the number of

veterans who need the services, the availability and

cost to the veteran of non-VA services, veterans’ and

their families’ awareness of VA and non-VA services, their perception of the relative quality of VA v.

non-VA services, and other factors (641, 662,741).

Since the availability of VA services is determined by the supply of and the demand for services,

availability changes in response to changes in both

the factors that affect supply (e.g., the funds available to the VA) and the factors that affect demand

(e.g., the number of veterans who need services). A

full analysis of these factors is beyond the scope of

this OTA assessment. It is clear, however, that

current pressures to contain Federal spending are

placing limits on the funds available to the VA. At

the same time the VA is faced with increased

demand for services because of the growing number

of older veterans (8,490,815,820,854). The number

of veterans over age 65 increased from 3 million in

1980 to 7 million in 1990 and is expected to increase

to 9 million by the year 2000 (854). Historically,

veterans have relied primarily on non-VA services.

From 1979 to 1981, for example, only 13 percent of

all veterans’ hospitalizations were in VA hospitals

(823). That could change, however, if the cost of

non-VA services increased or their availability or

quality decreased (741).

Spurred by an awareness of the increasing number

of older veterans, the VA and other government

agencies have tried to project the future demand for

VA services (805,824). In 1984, the VA published a

report projecting future demand and setting goals for

% lg84, about 30 percent of tie veter~ treated in VA hospitals had a servic~connected disability, and 70 pticent did not. @ one Pficu~ day,

Sept. 30, 1984, 16 percent of the veterans treated in VA hospitals were being treated for a condition related to their service-comected disability, and

84 percent were being treated for a nonservicz-connected condition (823). OTA is not aware of more recent data on these issues. Pre sumably, however,

iftherehas beenanincrease since 1984 in the proportion of veterans being treated in VA facilities who are being treated for a serviceconnected disability

or who at least have a service-connected disability, veterans with dementia who do not have a service-connected disability are less likely to receive

services.
214 . Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

specific VA programs considered important in

caring for older veterans (e.g., GRECCs, GEUs,

hospital-based home care, adult day health care, and

community residential care).9 With the exception of

hospital-based home care, the VA is far from

reaching its 1990 objectives for these programs.l0

The preceding discussion suggests that the supply

of certain VA services is unlikely to meet the

demand for the services on a national level and that

veterans with dementia who do not have a serviceconnected disability and do not meet one of the other

criteria that give an individual high priority for

receiving discretionary VA services maybe unlikely

to receive the services. During testimony at a hearing

in April 1989, representatives of two veterans

organizations testified that some VA medical centers were turning away category B and C veterans

(490,882). One representative of a service organization said that several VA medical centers have

publicly announced the discontinuance of all types

of care for category B and C veterans (490). On the

other hand, the supply of and demand for VA

services varies at different VA medical centers, and

as discussed earlier, the eligibility criteria for

different VA services also vary. Despite the problems of space availability, therefore, it is likely that

some, and perhaps many, veterans with dementia

will continue to receive VA services.

The Lack of Information About VA Services

As noted in the beginning of this chapter, OTA

has heard complaints from some caregivers of

veterans with dementia about the difficulty of

finding out what services are available from the VA.

Anecdotal evidence suggests that many veterans and

their families are not knowledgeable about what

services are provided by the VA. In the course of this

study, it has become clear to OTA staff that many

non-VA health care and social service professionals,

service providers, information and referral agencies,

case managers, and others who refer people with

dementia to services also are not knowledgeable

about VA services. This lack of knowledge includes

both a lack of general awareness of services, referred

to as service consciousness in this report, and a lack

of knowledge about specific services, referred to as

service knowledge in this report.

OTA is not aware of any research on how families

and other informal caregivers of veterans with

dementia, who are eventually linked to VA services,

find out about the services. VA medical centers

frequently have printed brochures that describe the

services they provide, but these brochures seem to be

of only limited utility for caregivers of veterans with

dementia. Anecdotal evidence indicates that some

caregivers find out about potentially helpful VA

services by contacting a VA medical center directly.

Other caregivers find out about such services from

veterans organizations that may not only give them

information about services but also help them obtain

the services. Still other caregivers find out about VA

services from anon-VA health care or social service

professional, service provider, or case manager who

has previously learned about the services from

another client, a professional meeting, or another

source. OTA does not know how many caregivers

learn about VA services in any of these ways. Often,

however, it seems that caregivers find out about

potentially helpful VA services in completely haphazard ways. As described in box 6-C, all but one of

the members of the Wives Support Group at the E.N.

Rogers Memorial Veterans Hospital in Bedford,

Massachusetts, said they found out about the special

Alzheimer’s program at the VA hospital “by accident,’ from a friend, an acquaintance, or a TV

program they happened to watch. Probably some

caregivers only learn about some of the VA’s

extended-care services and the special VA programs

described in this chapter after their relative or friend

with dementia has been admitted to a VA hospital

for an acute medical condition.

Given the variation among VA medical centers in

the amount and kinds of services they provide and

the complex issue of space availability that affects

what services are really available though a VA

medical center, it is easy to understand why there

would be a lack of accurate information about VA

services. Until recently, the VA itself has not been

fully aware of the kinds of services it is providing for

veterans with dementia. In 1988, the VA conducted

%e projections in the VA’s 1984 report were made before the 1986 and 1988 revisions to the eligibility criteria for VA services. OTA is not aware

of any projections of future demand for VA semices that take those revisions into consideration

lo~a~y, wi~hospi&=home ~eprograms at 73 medical centers, the VA is close to its 1990 goal of 76 medical cezlters with hospital-based

home care programs. Only 87 VAmedical centers have GEUS, still 33 short of the 1990 goal of 120 centers. There are 12 GRECCS, 18 GRECCS shy

of the 1990 goal of 30. Adult day health care is available through 15 VAmedical centem, 25 below the 1990 goal of 40 programs. Community residenthd

care is available through 127 VA medical centers, although the 1990 goal was to have that program in effect in all 172 VA medical centers (854,917).
Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services ● 215

a survey of all 172 VA medical centers to find out

what programs and services were available for

veterans with dementia (76). The results of the

survey have been compiled into a directory for

internal VA use in referring veterans and their

caregivers to services and responding to public

inquiries about the location of services for veterans

with dementia across the country. It is hoped that the

directory will allow the VA to provide more accurate

information about services (76). The directory

cannot solve the problem of determiningg whether an

individual veteran with dementia will actually receive VA services, however, because that determination depends to a great extent on space availability

at the time the veteran needs the services.

Summary and Implications

The complexity of the eligibility requirements for

VA services, the difficulty of determiningg whether a

veteran with dementia will receive VA services, and

the lack of information about VA services complicate the process of linking veterans with dementia to

VA services. Anecdotal evidence indicates that

many caregivers of veterans with dementia do not

know what VA services are available and do not

know how to find out. As a result, some caregivers

may not apply for services the veteran needs and

could receive from the VA. Other caregivers may

assume mistakenly that the VA will provide the

needed services. When these caregivers finally do

apply to the VA for services--often very late in the

course of the veterans’ illness when the caregiving

situation has become unmanageable-they may find

that the services they need are not available, that the

veteran is not eligible for the services, or that the

programs that provide the needed services are full.

The recently completed directory of VA services

for veterans with dementia should allow the VA to

provide more accurate information about services.

With the exception of certain services now mandated

for certain veterans, however, most VA services are

provided on a “space available” basis. Since space

availability cannot be determined much before the

time when the veteran will use the services, families

and other informal caregivers generally cannot know

in advance whether the veteran will receive VA

services. This is true of the extended care services

and many of the special VA programs described

earlier in this chapter. Without that information,

families and others cannot plan ahead for the care of

a veteran with dementia.

Some caregivers of veterans with dementia contact the VA directly for information about services,

but other caregivers would be unlikely to contact the

VA unless they were referred by another source. The

same factors that make it difficult for caregivers to

know about potentially helpful VA services also

make it difficult for non-VA health care and social

service professionals, service providers, information

and referral agencies, case managers, and others who

refer people with dementia to services to know about

VA services. Anecdotal evidence suggests that some

individuals who refer people with dementia to

services have an informal connection to someone at

the VA and contact that person from time to time

when they need information about VA services

(404), but many agencies and individuals that refer

people with dementia to services probably do not

have such a contact at the VA and may not know how

to find out about VA services.

Over the years, the VA has participated in several

cooperative initiatives with other community agencies, one purpose of which has been to inform the

other agencies about VA services so that they can

provide accurate information about VA services for

veterans they may see as clients. Some VA medical

centers and area agencies on aging (AAAs) have

worked together to develop information and referral

procedures to help the AAAs make appropriate

referrals for VA services (662). Facilitating appropriate referrals of veterans to the VA for services is

also one of the positive outcomes of many of the

‘‘sharing agreements’ discussed later in this chapter.

Finally, with respect to the policy question of the

role of the VA in relationship to a national system to

link people with dementia to services, it is clear that

only the VA can finally link veterans with dementia

to VA services. Non-VA health care and social

service professionals, service providers, information

and referral agencies, and case managers can refer

veterans with dementia to the VA, and these referrals

can be more or less appropriate. Likewise, a non-VA

linking system could refer veterans with dementia to

the VA. Given the complexity of the eligibility

requirements for VA services, however, especially

as they interact with the factor of space availability,

it is clear that the VA must determine whether a

veteran will receive VA services and which services

he or she will receive. These functions cannot be

performed by the non-VA linking system, and this

OTA report does not consider that an option.
216 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

PROBLEMS IN LINKING

VETERANS WITH DEMENTIA TO

NON-VA SERVICES

Although the VA provides many of the services

that may be needed for veterans with dementia, some

veterans with dementia are not eligible for VA

services, and some services that are needed for

people with dementia are not available from the VA

or are only available from certain VA medical

centers. As a result, many veterans with dementia are

likely to need non-VA services as well.

The VA has at least four mechanisms by which it

links veterans to non-VA services. Two of these

mechanisms-hospital discharge planning and case

management--directly link individual veterans to

non-VA services. The other two mechanisms—

“sharing agreements” and the functions of the

‘‘community services coordinator’ at each VA

medical center—generally coordinate VA and nonVA services, thereby indirectly facilitating veterans’

access to non-VA services. This section briefly

describes each of the four mechanisms and discusses

problems that may interfere with their effectiveness.

The section also identifies certain types of veterans

who are unlikely to be linked to non-VA services

through the four mechanisms.

It is interesting to note that although some people

believe that the VA should provide the full range of

health care, long-term care, and other services

needed for all veterans, the VA often describes its

role as providing certain services and attempting to

ensure that veterans have access to the other services

they need through the four mechanisms discussed in

this section (837,860). In that sense, hospital discharge planning, case management, Community

services coordination, and joint initiatives with

non-VA agencies are the means by which the VA

tries to promote continuity of care and ensure the

availability of comprehensive services for veterans

even though it cannot provide all the services

directly.

VA Mechanisms for Linking Individual

Veterans to Non-VA Services

The Social Work Service at each VA medical

center has primary responsibility for linking individual veterans to non-VA services and implements that

responsibility largely through hospital discharge

planning and case management. Veterans who need

non-VA services can come to the attention of the

Social Work Service in several different ways:

●

●

●

●

veterans who are receiving inpatient care in a

VA hospital maybe referred to or identified by

the Social Work Service as needing hospital

discharge planning;

veterans who are receiving extended-care services through certain VA programs routinely

receive case management, which is usually

provided by the Social Work Service;

veterans who apply to a VA medical center for

services but are denied VA services for any

reason (e.g., they are not eligible, there is no

space in the service program, or the VA medical

center does not provide the services they need)

may be referred by the admissions office to the

Social Work Service; and

veterans and their families who are not receiving any VA services may contact the Social

Work Service directly for assistance in finding

non-VA services.

Each VA medical center has a policy for hospital

discharge planning. Within that policy, the Social

Work Service is required to have discharge planning

procedures that include:

●

●

●

●

●

the provision of a multidisciplinary assessment;

the development of a plan of care that incorporates quality of life concerns;

the involvement of the veteran, the veteran’s

family, and significant others in discharge

planning;

the Provision of referrals to non-VA service

providers and assistance in

services; and

the provision of referrals to

services (858).

In fiscal year 1987, VA social

hospital discharge planning for

(857).

arranging non-VA

VA extended-care

workers provided

420,000 veterans

VA case management includes the five functions

identified by OTA as core case management functions (i.e., client assessment, care planning, service

arrangement and coordination, monitoring, and reassessment), plus screening (236). The VA routinely

provides case management for veterans who are

receiving extended-care services through certain VA

programs, such as the hospital-based home care

program, the community nursing home program,

and the community residential care program. The
Chapter 6--Linking Veterans With Dementia to VA and Non-VA Services ● 217

Social Work Service generally has primary responsibility for the provision of case management in these

programs, but in some instances, the case manager

may be a VA nurse or another member of the

treatment team, depending on the veteran’s needs

(236). In these programs, case management includes

arranging and coordinating both VA and non-VA

services (858).

The Social Work Service at each VA medical

center is required to identify veterans in certain “at

risk” categories and to provide hospital discharge

planning and case management for them, as needed

(858). Veterans with dementia might be included in

several of the “at risk” categories, e.g., “chronically ill, “ “incompetent,’ or ‘age 70, disabled, and

living alone.” OTA is not aware of any data on the

number of veterans with dementia who receive

hospital discharge planning or case management

through the VA.

VA hospital discharge planning and case management are provided primarily for veterans who are

already receiving or are eligible for VA services: by

definition, VA hospital discharge planning is provided for veterans who are receiving inpatient care,

and VA case management is provided most often for

veterans who are receiving VA extended-care services. On the other hand, the Social Work Service at

each VA medical center is not strictly limited to

helping veterans who are already receiving or are

eligible for VA services (620). Two situations in

which VA social workers might assist veterans who

are not already receiving or eligible for VA services

were noted earlier: 1) situations in which veterans

who apply for but do not receive VA services for any

reason are referred by the admissions office to the

Social Work Service, and 2) situations in which

veterans or their families contact the Social Work

Service directly for assistance in finding non-VA

services (620). OTA does not know how frequently

either of these situations occur. VA social workers

are probably more likely to provide information and

referrals than comprehensive case management in

these situations.

Four software programs have been developed by

the Social Work Service Special Interest Users

Group to assist VA social workers with discharge

planning and case management. The four programs

are:

●

●

●

●

The High-Risk Screening Program, which is

intended to identify veterans who are most

likely to need social work services, including

discharge planning and case management;

The Case Registry System, which is intended to

help social workers keep track of veterans

throughout the course of their care;

The Community Resources Managers Program, which is intended to help the Social

Work Service at each VA medical center

maintain an accurate and easily accessible list

of non-VA services and service providers by

type and geographic location of the provider;

and

The Contract Nursing Home Budget and Censw System, which is intended to help social

workers maintain information about VA patients in non-VA nursing homes under contract

with the VA (236,856).

Problems in Linking Individual

to Non-VA Services

According to several sources, one

Veterans

of the most

difficult problems encountered by the VA in linking

individual veterans to non-VA services is the

complexity and fragmentation of non-VA services at

the community level—the same problem encountered by anyone who tries to locate and arrange

services in many communities (481,854,860). Although some VA medical centers are using the

Community Resources Managers Program software

or other systematic procedures to develop and

maintain an accurate list of non-VA services,

obtaining the necessary information to keep the list

up-to-date can be time-consuming and difficult, just

as it is time-consuming and difficult for non-VA

information and referral agencies, case managers,

and others.

The complexity and fragmentation of non-VA

services at the community level exists irrespective of

the mechanisms by which the VA links individual

veterans to non-VA services, but two other problems

in linking individual veterans to non-VA services

are related to those mechanisms. One problem is that

the VA mechanisms for linking individual veterans

to non-VA services are available primarily, although

not exclusively, to veterans who are already receiving or are eligible to receive VA services. Many

veterans with dementia are unlikely to receive or to

be eligible for VA services and therefore may not
218 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

receive help from VA social workers in finding

non-VA services.

A second problem is that the mechanisms by

which the VA links individual veterans to non-VA

services are more easily implemented for veterans

who live near a VA medical center, but some VA

medical centers have a very large catchment area,

and many veterans in their catchment areas live far

from the center. In general, it is probably more

difficult for the Social Work Service at a VA

Medical Center to maintain an accurate list of

non-VA services for geographic areas that are far

from the VA medical center than for areas near the

center. Likewise, it is more difficult for VA social

workers to provide case management for veterans

who live far from the medical center. As a result,

these veterans may not receive adequate assistance

from the VA in linking to non-VA services.

The Minneapolis VA Medical Center has developed a case management program that successfully

addresses the latter problem (316). The case management program seines veterans in three areas that

comprise 23 primarily rural counties in south central

and southeastern Minnesota and 16 primarily rural

counties in western Wisconsin. The program is

intended to help frail elderly veterans obtain the VA

and non-VA services they need to live independently and avoid premature institutionalization. The

VA has assigned a VA social worker to each of the

three designated areas to provide outreach, case

management, caregiver support, and patient advocacy.

VA Mechanisms for Coordinating VA

and Non-VA Services

In addition to hospital discharge planning and

case management, the VA has at least two mechanisms by which it attempts to coordinate VA and

non-VA services and thus indirectly facilitate veterans’ access to non-VA services. One of these

mechanisms is “sharing agreements” between VA

medical centers and non-VA agencies in which the

non-VA agencies provide services for veterans in

exchange for information, technical assistance, consultation, and other services from the VA medical

center. Although there were informal arrangements

for sharing resources and expertise between VA

medical centers and non-VA agencies before 1975,

official support for formal “sharing agreements”

began in 1975 with a working agreement between

the VA and the Administration on Aging (820). One

sharing agreement between a VA medical center and

an AAA in West Virginia is described in box 6-D.11

The second mechanism by which the VA attempts

to coordinate VA and non-VA services is through

the designation of “community services coordinators” who are intended to be the focal point for

contact between the VA and non-VA agencies (859).

Since 1985, the VA has required the Social Work

Service at each VA medical center to identify a

community services coordinator. The functions of

the community services coordinator are as follows:

●

●

●

●

●

●

to identify and assess existing non-VA health

care, social, and volunteer services;

to coordinate and integrate the VA’s services

and activities with the non-VA health and

social services network, including AAAs;

to make available the full range of non-VA

services to aging veterans and their caregivers;

to facilitate VA staff involvement in joint

activities with AAAs and other community

agencies, including program development, sharing services, and cooperative planning;

to integrate and link non-VA resources into the

VA’s Medical District Initiated Program Planning (MEDIPP) process; and

to facilitate joint development of health education and disease prevention programs (859).

In addition to the community services coordinator at

each VA medical center, there is a community

services coordinator at the VA Medical District level

who is responsible for developing new programs,

drawing up cooperative agreements between the VA

and community providers, and integrating the concerns of the community services coordinator at each

medical center into the District’s planning process.

Some VA medical centers are part of a consortium

of agencies that is unique to a specific locality. One

example is the VA medical center in Tulsa, Oklahoma, that is part of the Long-Term Care Management Authority of Tulsa described in chapters 1 and

7. Another example is the VA medical centers in the

Chicago area that are part of the VA/AAA Council,

described in box 6-E. Like sharing agreements and

ll~e s-g ag~ment described inbox 6-D does not require the VA to provide direct services for nonveterans, but the VA is permitted tO provide

direct services for nonveterans in the context of a formal sharing agreement.
Chapter 6---Linking Veterans With Dementia to VA and Non-VA Services .219

Box 6-D-The “Sharing Agreement" Between a VA Medical Center and an Area Agency on Aging

in West Virginia

The Louis A. Johnson VA Medical Center in Clarksburg, West Virginia, has a formal (signed by both parties)

sharing agreement with the area agency on aging (AAA) in nearby Fairmont, West Virginia The agreement

delineates the service coordination and case management functions the AAA is obligated to provide for veterans

discharged to the community from the VA hospital and the training the VA is obligated to provide for AAA staff

members and other non-VA service providers.

When a veteran is discharged to the community from the VA hospital, the Social Work Service at the VA

medical center notifies the AAA. The AAA provides an assessment and, based on the results of the assessment, links

the veteran to non-VA services he or she needs, such as home-delivered meals and homemaker and chore services

Since the VA medical center does not have a hospital-based home care program, the AAA also arranges for home

health services, if they are needed. In return for the case management provided by the AAA, the VA furnishes

training on specific topics to AAA staff and the staff of other non-VA agencies.

Through the sharing agreement, veterans who are discharged from the VA hospital are assured of receiving

help in obtaining the non-VA services they need to remain at home. The AAA director believes that the formality

of the sharing agreement has been important to the program’s success over the years and advocates this type of

agreement for all VA medical centers.

SOURCE: J. Hunter, director, Area Agency on Aging, Fairmont, West Virginia, testimony to the Joint Hearingof the Subcommittee on Hospitals

and HealthCarc of the Committee on Veterans' Affairs and the Select Committee on Aging, House of Representatives, u.s. Congress,

Washington, DC, Apr. 23, 1985; T. Moody, chief, Social Work Service, Louis A. Johnson VA Medical Center, Clarksburg West

Virginia, personal communications, Oct. 5, 1988 and July 13, 1989.

the functions of the community services coordina- agencies, and vice versa (820). A witness representtors, the involvement of VA medical centers in local

consortiums with non-VA agencies results in greater

interaction between the staff of the VA medical

centers and of the non-VA agencies and thereby

facilitates veterans’ access to non-VA services.

Problems in Coordinating

VA and Non-VA Services

According to VA officials, the major problem

with the community services coordinator program is

understaffing. Typically, one social worker is designated to this position in a half-time capacity and

must function as the community services coordinator in addition to his or her other responsibilities

(620). The primary problem with formal sharing

agreements is that although the formal agreements

are usually effective in coordinating VA and nonVA services, very few VA medical centers have

established them. According to one VA official, the

typical VA medical center has, at best, a verbal

agreement with the local AAA (620).

At a 1985 joint hearing of the House Select

Committee on Aging and the Veterans’ Affairs

Subcommittee on Hospitals and Health Care, VA

officials testified that virtually all VA medical

centers have established contact with AAAs, and

that such contact has greatly increased the number of

appropriate referrals from the VA to community

ing the leadership council of aging organizations

testified, however, that, despite some unique local

arrangements between VA medical centers and

AAAs, the connections between VA medical centers

and non-VA agencies in their catchment areas are

generally fragmented (343).

Summary and Implications

VA hospital discharge planning and case management help link veterans to non-VA services. VA

community services coordinators and formal sharing

agreements and other arrangements between VA

medical centers and non-VA agencies help to

coordinate VA and non-VA agencies and thereby

indirectly facilitate veterans’ access to non-VA

services. A major problem in linking veterans to

non-VA services is the complexity and fragmentation of non-VA services at the community level. As

discussed throughout this OTA report, a national

system to link people with dementia to services

would help families and others find the services they

need to care for a person with dementia. One option

discussed in chapter 1 is that if such a national

linking system were established, VA hospital discharge planners and case managers could refer

veterans with dementia to that system for assistance

in locating and arranging non-VA services.

89-150 - 90 - 8
220 ● Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 6-E—The VA/AAA Council of the Chicago Area VA Medical Centers and Three AAAs

Since 1985, the VA medical centers in the Chicago metropolitan area and three area agencies on aging (AAAs)

have been working together to “provide comprehensive and coordinated social and health services to a rapidly

expanding population of older veterans. Together they formed the Metropolitan Chicago Veterans Administration/

Area Agency on Aging Collaboration Council-known as the VA/AAA Council.

The purposes of the VA/AAA Council are: 1) to identify areas for potential collaboration; 2) to act as an

information clearinghouse and a “best practice” forum for coordinated programs and services for older veterans;

3) to facilitate joint program development, coordination, evaluation, and service delivery to older veterans; 4) to

review proposed projects and make recommendations for their implementation; and 5) to help obtain funding for

joint activities.

Each year the VA/AAA Council establishes priorities. This is done by sharing the agencies’ specific needs and

priorities for their own target populations and then identifying common areas of concern. One of the projects of the

VA/AAA Council is an adult day health care program called the Alzheimer’s Family Care Center. The Alzheimer’s

Family Care Center, which opened in 1987, is the result of collaboration between two VA/AAA Council

members-the VA West Side Medical Center and the Chicago Department on Aging and Disability-and two

nonmembers-Rush-Presbyterian-St. Luke’s Medical Center and the Chicago Chapter of the Alzheimer’s

Association. The center serves both veterans and nonveterans, but veterans have priority for 40 percent of the

enrollment slots.

SOURCE: “Working Together---Metro Chicago’s VA and AAA--To Assist Chicago’s Elderly Veterans,” Aging Network News, May 1989,

vol. 6, No. 1, pp. 3-4.

Currently, VA hospital discharge planning and with dementia. The VA estimates that there will be

case management are provided primarily for veter- 600,000 veterans with dementia by the year 2000.

ans who are already receiving or are eligible for VA

services. As a result, some veterans who are not

already receiving or eligible for VA services may not

receive from the VA the help they need to find

non-VA services. If a national linking system were

established, that system might be given primary

responsibility for helping veterans who are not

already receiving or eligible for VA services to find

the non-VA services they need, while the VA

retained primary responsibility for helping veterans

who are receiving or are eligible for VA services to

find non-VA services. The other type of veterans

who may not receive the help they need from the VA

to find non-VA services is veterans who live far from

a VA medical center. It is possible that the national

linking system should also be given primary responsibility for linking those veterans to non-VA services. If, in contrast, the VA were to have primary

responsibility for linking all veterans to non-VA

services, it would need more staff and more resources than it now has for that purpose.

CONCLUSION

By the year 2000, there will be 9 million veterans

over age 65, including two-thirds of all males over

age 65 in this country. As the number of elderly

veterans increases, so will the number of veterans

The VA operates the largest health care system in

the United States and currently furnishes many of

the kinds of services that maybe helpful for veterans

with dementia. Those services include acute medical

care, diagnosis, multidimensional client assessment,

nursing home and domiciliary care, hospital-based

home care, adult day health care, institutional respite

care, and several other programs of particular

relevance for veterans with dementia and their

caregivers. These services are not available at all 172

VA medical centers, however, and not all veterans

with dementia are eligible for them. Moreover, some

services that may be needed for veterans with

dementia are not provided at all by the VA, and

many VA services are furnished only on a “space

available’ basis, so that even if a veteran is eligible

for a service and the service he needs is provided by

a VA medical center that is accessible to him, he may

not receive the service because the program is full.

Unless the VA were to provide all the services that

may be needed for all veterans with dementia (a

possibility OTA considers very unlikely), veterans

with dementia are likely to need both VA and

non-VA services, and effective mechanisms must be

in place to link them to both. Problems of several

kinds interfere with the process by which veterans
Chapter 6-Linking Veterans With Dementia to VA and Non-VA Services ● 221

are linked to VA services. The eligibility criteria for

VA services are extremely complex. Veterans and

their families do not understand the criteria and may

assume the veteran is eligible for services when he

or she is not, or vice versa. They also may not be

aware of potentially beneficial services provided by

the VA. Non-VA agencies and individual professionals and service providers who work with veterans with dementia often do not understand the VA’s

eligibility requirements and may not be knowledgeable about VA services. As a result, they may not be

able to give veterans and their families accurate

information about available services or eligibility

for the services.

Other problems interfere with the process by

which veterans are linked to non-VA services. Each

VA medical center’s Social Work Service has a

community services coordinator whose job is to

identify non-VA services in the community, and the

VA has developed a software system to help the

Social Work Service at each VA medical center

maintain an up-to-date list of non-VA services. The

community services coordinator position is staffed

only half-time at many VA medical centers, however, and the complexity and fragmentation of

non-VA services in many communities makes it

difficult for anyone to maintain an accurate, comprehensive resource list.

Without effective methods for linking veterans

with dementia to both VA and non-VA services, the

veterans will not receive services they need, and

their families are likely to be frustrated and upset.

The policy question discussed in chapter 1 is the

appropriate division of responsibility between the

VA and a non-VA linking system for connecting

veterans with dementia to services. If a national

linking system were established, it could have

primary responsibility for linking veterans with

dementia to non-VA services. Alternatively, the VA

could have primary responsibility for linking veterans to non-VA services. The pros and cons of these

two alternatives are discussed in chapter 1.

As discussed earlier, the complexity of the

eligibility requirements for VA services, especially

as they interact with the factor of space availability

mean that only the VA can finally link veterans to

VA services. This report does not consider the

possibility that the national linking system could

perform that function. On the other hand, the linking

system would have to be somewhat knowledgeable

about VA services and eligibility requirements in

order to know when to refer veterans with dementia

and their caregivers to the VA. Finally, it is clear that

the VA services are important for veterans with

dementia, and the VA must be involved in the

planning and operation of a national system to link

people with dementia to services regardless of the

specific responsibility it assumes for linking veterans with dementia to non-VA services.
Part II

Possible Approaches to Linking

People with Dementia to Services
Chapter 7

State Programs and State and

Community Service Systems

That Link People to Services
CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227

STATE LINKING PROGRAMS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .229

Public Education Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 229

Information and Referral Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 230

Outreach programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .235

Case Management Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .235

States With Numerous Linking Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 237

Summary and Implications for a National System to Link People

With Dementia to Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 244

STATE AND COMMUNITY SERVICE SYSTEMS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245

Why Some States and Communities Have Developed Consolidated

Long-Term Care Service Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245

Changes Involved in Developing a Consolidated Service System . . . . . . . . . . . . . . . . . 246

Three States’ Consolidated Service Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 248

Four Communities’ Service Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

Summary and Implications for a National System To Link People

With Dementia to Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253

Lessons From Long-Term Demonstration Projects for the Development and

Operation of Long-Term Care Service Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 254

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 256

Box

Page

7-A. Missouri’s Information and Referral Programs for Elderly People and

for People With Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 234

Figures

Page

7-1. A Brochure Publicizing the Public Education and Other Services of

the New Hampshire Division of Elderly and Adult Services . . . . . . . . . . . . . . . . . . . . 231

7-2. A Resource Packet on Parkinson’s Disease Produced and Distributed by

the Kansas Department on Aging . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 232

7-3. Areas of New York Served by the State’s Alzheimer’s Disease Assistance Centers

and A1zheimer’s Disease Community Services Program . . . . . . . . . . . . . . . . . . . . . . . . 239

7-4. A Brochure Publicizing California’s 11 Regional Resource Centers for

the Families and Caregivers of Brain-Impaired Adults . . . . . . . . . . . . . . . . . . . . . . . . . . 242
Chapter 7

State Programs and State and Community Service

Systems That Link People to Services

INTRODUCTION

One of the major policy issues in establishing a

national system to link people with dementia to

services is whether Congress should designate a

single category of agencies to constitute the system

nationwide or should mandate that each State

designate the agencies that will make up the system

in that State. In considering this issue, it is important

to note that all States already have programs that link

at least some people with dementia to services. In

addition, some States and communities have a

service system that links at least some people with

dementia to services. This chapter discusses these

State linking programs and State and community

service systems.

As defined in this chapter, linking programs are

programs that perform one or more of the functions

that the Office of Technology Assessment (OTA)

concludes are essential to a system to connect people

with dementia to services:

●

●

●

●

public education (i.e., providing programs and

materials to help people understand dementia

and the kinds of services that maybe helpful for

individuals with dementia);

information and referral (i.e., providing information about and referrals to specific services

and sources of funding for services in a

community);

outreach (i.e., using any active method to

identify people with dementia and caregivers

who need assistance but are unlikely to respond

to public education programs or to contact an

information and referral source on their own);

and

case management (i.e., assessing a client’s

needs, developing a plan of care, arranging and

coordinating services, monitoring and evaluating services, and reassessing the client’s situation as the need arises).1

Service systems are defined in this chapter as

organizational entities that pool funds from several

different sources and integrate the functions of

various agencies that provide services in a given

geographic area. These entities are intended to create

a consolidated system through which people are

connected to services. An important difference

between linking programs and service systems is

that linking programs can be added to the service

environment in a State or locality without changing

the structure, function, or relationship of existing

agencies or the way services are funded, whereas the

creation of a consolidated service system necessarily

changes the structure, functions, and relationship of

existing agencies and funding procedures.

The primary purposes of this chapter are to point

out the existence of State linking programs and State

and community service systems and to convey a

sense of their diversity. These programs and systems

are a significant aspect of the environment into

which any federally mandated system to link people

with dementia to services would be placed. Their

existence and diversity greatly complicate the process of designing a national linking system. If States

and communities did not already have linking

programs and service systems, it would be relatively

easy to design a national linking system. In that case,

Congress could designate a single category of

agencies to constitute the system nationwide without the risk of duplicating or disrupting existing

State linking programs or State and community

service systems. Similarly, if existing State linking

programs and State and community service systems

were all alike, Congress could establish a national

linking system that simply connected existing programs and service systems (although in that case,

such a system probably would have been established

years ago).

To design a national linking system that builds on

and meshes with the diverse State linking programs

and State and local service systems described in this

chapter is difficult. The alternative, however, is the

imposition of a system that further complicates and

fragments what is already an extremely complicated

and fragmented service environment. For this reason, many people, including almost all the members

of the advisory panel for this OTA study, believe that

Congress should mandate that each State designate

IFor OTA’s analysis of why these functions are essential components of a system to link people with dementia to Semices, see ck. 2 ~d 3.

–227–
228 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

the agencies that will make up the linking system in

that State. On the other hand, there are certain

advantages to having Congress designate a single

category of agencies to constitute the system nationwide, as discussed in chapter 8. The information

about State linking programs and State and community service systems that is presented in this chapter

is helpful in weighing these policy options.

The information about State linking programs and

State and community service systems presented here

is also relevant to another policy issue raised in the

report—i.e., whether a national system to link

people with dementia to services should serve only

people with dementia (i.e., whether it should be

dementia-specific) or whether it should serve people

with other diseases and conditions as well. Most

State linking programs and State and community

service systems serve elderly people or elderly and

disabled people. Recently, however, many States

have undertaken a range of dementia-specific initiatives, 2

including dementia-specific linking programs,

and a few communities have developed dementiaspecific service systems.

Several State officials and other people have told

OTA they are opposed to the development of

dementia-specific linking programs and service

systems, because, in their view, people with dementia can be served effectively by programs and

systems that serve elderly and disabled people in

general and because dementia-specific programs

and systems contribute to the fragmentation of the

service environment. On the other hand, some

people, including some advocates for people with

dementia and their families, believe that dementiaspecific linking programs and service systems are

needed because existing programs and service systems that are intended for elderly and disabled

people often do not serve people with dementia

effectively.

In considering the issue of whether a national

linking system should be dementia-specific, it is

useful to compare the dementia-specific v. general

linking programs and service systems in different

States and communities. In considering this issue, it

is also useful to keep in mind the distinctions made

in chapter 1 among the concepts dementia-friendly,

dementia-capable, and dementia-specific. With respect to linking programs and service systems,

dementia-friendly means that the linking program or

service system is responsive to people with dementia

and their caregivers. Dementia-capable means that

the program or system is skilled in working with

people with dementia and their caregivers, knowledgeable about the kinds of services that may help

them, and aware of which agencies and individuals

provide such services in the community. Dementiaspecific means that the program or system serves

people with dementia exclusively. As discussed in

chapter 1, it is at least theoretically possible for a

linking program or service system to be dementiafiiendly and dementia-capable without being dementiaspecific.

The information about State linking programs and

State and community service systems presented in

this chapter is also relevant to two other policy issues

raised in the report:

1. whether agencies that constitute a national

linking system should provide services in

addition to linking their clients to services, and

2. whether the agencies that constitute the system

should allocate services or finding for services

in addition to linking their clients to services.

Some of the State linking programs and State and

community service systems described in this chapter

are administered by agencies that also provide

services. Likewise, some of the State linking programs and all of the State and community service

systems described in the chapter allocate services

and/or funding for services. These State programs

?I’he dementia-specific initiatives undertaken by some States and localities in the past several years include: 1) establishing task forces and

commissions to study the problem of Alzheimer’s disease and related disorders and recommend solutions; 2) funding biomedical research on diseases

that cause demen~ 3) developing caregiver support groups and caregiver education and training programs; 4) establishing regional Alzheirner’s

diagnostic and assessment centers; 5) sponsoring education and tmining programs for service providers about Alzheimer’s disease, dementi% and how

to care for people with dementia; 6) establishing dementia-speciilc in-home, adult day, and respite services; 7) modifying the eligibility requirements

forpubliclyfunded programs so that they are available to people with dementia (e.g., by adding dementia to the categories of conditions that make people

eligible for services or by lowering the age reqfiements for certain services so that people with dementia who are underage 60 or 65 can receive them);

8) encouraging the development of special nursing home units for people with dementia; 9) establishing guidelines or regulations for nursing home

special care units; 10) establishing patient registries; 11) providing cash grants to families so that they can purchase services; and 12) prohibiting private

insurance policies from excluding Alzheimer’s disease as a covered condition (5,14,122,333,465,5 13,576).
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 229

and State and community service systems exemplify

alternate models for a national linking system.

The diversity of State linking programs and State

and community service systems creates a kind of

natural laboratory for comparing various approaches

to linking people with dementia to services. The

congressional committees that requested this assessment asked OTA to identify approaches that are

being used in one State or locality and might be

adapted for use in other jurisdictions. This chapter

describes many such approaches.

Some of the same categories of agencies that are

discussed in other chapters of this report are used by

States and communities to administer their linking

programs and service systems. These categories of

agencies are mentioned in this chapter only if they

are part of a State linking program or a State or

community service system. Chapter 8 discusses area

agencies on aging (AAAs), home health care agencies, community mental health centers, Alzheimer’s

Association chapters, the Family Survival Project,

regional Alzheimer’s diagnostic and assessment

centers, and five other categories of agencies that

link some people with dementia to services and

could, at least theoretically, be designated by Congress as the basis for a national system to link people

with dementia to services.

STATE LINKING PROGRAMS

Many States have linking programs that serve at

least some people with dementia. The following

sections describe some of these programs. The

programs are categorized in terms of their emphasis

on one of the four linking functions that OTA

concludes are critical to an effective system to link

people with dementia to services: 1) public education, 2) information and referral, 3) outreach, and 4)

case management. As pointed out in the discussion,

some of the programs perform more than one of

these functions, but none of the programs performs

all four functions. The purpose of the discussion is

to convey a sense of the number and diversity of

existing State linking programs and the many types

of public and private agencies that are involved in

implementing the programs. The discussion does not

cover all State linking programs, however, and the

particular programs cited are not the only good

programs of their type.

Some States, notably New York and California,

have numerous programs that link at least some

people with dementia to services. Other States have

comparatively few linking programs. The multiple

linking programs in New York and California are

discussed later in this chapter.

Public Education Programs

EEil Public education programs to help

people understand dementia and the

— — kinds of services that maybe help- —

~

ful for individuals with dementia

— may be provided by various means,

including pamphlets, articles, newsletters, and other publications; posters, press releases, and public service advertising in various

media; radio and television programs; audiotapes

and videotapes; teaching packets and curricula;

lectures, community meetings, and conferences. The

primary sources of public education pertaining to

dementia and services for people with dementia have

been the national voluntary associations that represent people with Alzheimer’s disease and other

diseases that cause dementia. As described below,

however, some States also have developed or paid

for the development of public education programs

on dementia and services for people with dementia.

In Pennsylvania, for example, the State Department of Aging has funded a variety of public

education initiatives related to dementia over the

past 6 years (14,650). One of these was the

production, in 1984, of a television documentary on

Alzheimer’s disease and related disorders entitled

“You Are Not Alone.” Also in 1984, the department gave a grant to the Western Pennsylvania

Alzheimer’s Association Chapter to develop a

booklet on Alzheimer’s disease, ‘‘Aging and Senile

Dementia-What Every Pennsylvanian Needs To

know About Alzheimer’s Disease and Other Types

of Senile Dementia. ’ The booklet has been distributed to individuals, support groups, hospitals, and

other organizations. The Pennsylvania Department

of Aging also developed a 4-part slide/audio training

program for family caregivers of people with dementia. That program, which includes segments on

community resources and financial and legal planning, is made available to caregivers through Alzheimer’s Association chapters and AAAs. Still

another public education activity of the Pennsylvania Department of Aging is the maintenance of a

statewide clearinghouse that provides general infor-
230 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

mation about dementia and the kinds of services that

may be needed for people with dementia.

Like Pennsylvania, several States have dementiaspecific public education programs that are administered by the State’s department, division, or

commission on aging. In New Hampshire, the State

Division of Elderly and Adult Services sponsors

dementia-specific public education programs that

provide books, articles, videotapes, service directories, workshops, and speakers for community groups

(see figure 7-1) (596). In Kansas, the State Department on Aging has produced and distributes comprehensive resource packets on Alzheimer’s, Parkinson’s, and Huntington’s diseases that contain general information about the disease, appropriate

treatment, community services, and sources for

more information (395). The cover of each book

includes a toll-free number that people can call for

referrals to specific service providers (see figure

7-2). In Delaware, the State Division of Aging funds

an Alzheimer’s resource center, which provides

books, audiotapes, videotapes, and other educational

materials about dementia and services for people

with dementia (132). In South Carolina, the State

Commission on Aging recently produced a videotape and printed educational materials on Alzheimer’s disease to train AAA staff and others who

work with elderly people so that they will be able to

provide public education programs in their communities (78).

Many States have established a task force or

committee to study the problem of Alzheimer’s and

other dementing diseases, and public education has

been one of the primary functions of these task

forces and committees. Almost all of the task forces

and committees have issued reports that provide

information about dementia and services for people

with dementia.3 Members of the task forces and

committees also speak about these topics to community groups. In addition, most of the task forces and

committees have sponsored public meetings that

serve as educational forums as well as giving family

caregivers and others an opportunity to testify about

the problems they face in caring for a person with

dementia.

Some States, Ohio and Michigan among them,

have developed or paid for the development of

training manuals for family caregivers of people

with dementia (528,618). Other States, including

Georgia and Nevada, have funded or otherwise

supported the efforts of Alzheimer’s Association

chapters to develop and disseminate public education materials and programs (260,576).

In Alaska, the Older Alaskans Commission has

given grants since 1984 to the Alzheimer’s Disease

Family Support Group (a private organization in

Anchorage) to provide statewide public education

programs about dementia and services for people

with dementia (282,576). Alaska has many remote

communities, so the Alzheimer’s Disease Family

Support Group has used both teleconferences and

printed materials to provide information about

dementia to caregivers, providers, and others.

Information and Referral Programs

Information about and referrals

to specific services and sources of

funding for services in a community

can be provided by telephone or in

person. Most of the State information and referral programs are telephone programs. Some of the programs are intended

to serve elderly people or people of all ages, and

others are specifically intended to serve people with

dementia.

A 1988 survey by the National Association of

State Units on Aging found that 32 States had a

statewide toll-free telephone information and referral program for elderly people or people of all ages:

18 of the 32 programs were for elderly people, and

the remaining 14 were for people of all ages (577).

The extent to which existing information and referral

programs for elderly people or people of all ages

meet the needs of people with dementia and their

caregivers undoubtedly varies, but anecdotal reports

suggest that many of the existing programs fall short

in this regard. Such reports, in fact, were one impetus

for this OTA study.

Some States have tried to enhance the capability

of their information and referral programs to serve

people with dementia by requiring special training

for the staff of the programs and by developing

dementia-related materials for use by the programs.

In Illinois, for example, the Governor’s Task Force

on Alzheimer’s Disease has developed a special

information packet for people who call the State’s

3For a list of tie r~orts published by State task forces and committees on Alzheimer’s disease and related disorders, see app. C.
Chapter 7---State Programs and State and Community Service Systems That Link People to Services ● 231

Figure 7-l—A Brochure Publicizing the Public Education and Other Services of the New Hampshire Division

of Elderly and Adult Services

SERVICES OF THE

NEW HAMPSHIRE DIVISION OF

ELDERLY & ADULT SERVICES

Call or write the Coordinator for

Alzheimer’s Services at (603) 271-4687

for: A. D.R.D.

●

●

●

●

●

●

●

●

●

information and referral for families

books, articles, and videotapes on

loan

guides to services in eleven N.H.

region s

information about specific family

support groups

bibliography on ADRD

community education speakers

training workshops

consultation to service programs

respite care services

I

Alzheimer’s Diseas e

& Related Disorders

New Hampshire Division of Elderly & Adult Services

A public information service of

The New Hampshire Division

of Elderly& Adult Service s

Department of Health

and Human Services

6 Hazen Drive

Concord, NH 03301

(603) 271-4667

SOURCE: New Hampshire Division of Elderly and Adult Services, “A.D.R.D.,” New Hampshire Department of Health and Human Services, Concord, NH,

1988.
232 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Figure 7-2—A Resource Packet on Parkinson’s

Disease Produced and Distributed by

the Kansas Department on Aging

Parkinson’s Disease

GRANDPA HAS A DISEASE

THAT MAKES HIM FORGET . . .

FIND OUT WHY.

-. .

“ ‘f “ ~.c

// - -’- - {(f(;z - ~J>,

For information on j.< , ‘- )

)

Alzheimers, Parkinson, k -]’

Huntingtons & Related \

Disorders call the Helpline

;,; .g~ ~Lk+=g:

l-800 -432-3535 Statewide

296-4986 Topeka ‘@/i;~;

‘#’

c. -. \

,

Z/ -, ,?L’ -—

P+“ h>,

--’$Z-;

KANSAS DEPARTMENT ON AGING

SOURCE: Kansas Department on Aging, Resource Packet: Parkinson’s

Disease, Topeka, KS, June 1988.

telephone information and referral program for

seniors about services for a person with dementia

(345).

As discussed below, by 1989, at least 14 States

had established a statewide telephone information

and referral program specifically for people with

dementia. Many of the dementia-specific information and referral programs exist in addition to a

State’s information and referral program for elderly

people or for people of all ages. In Massachusetts,

for example, the State’s Office of Elder Affairs has

a statewide Alzheimer’s telephone information and

referral program that it has operated since 1985

(121). The State’s Office of Elderly Affairs also has

a separate telephone information and referral program for elderly people.

Since 1988, Connecticut has funded a statewide

Alzheimer’s telephone information and referral program through Info-Line, a United Way program

(143). Before 1988, Info-Line responded to calls

about services for people with dementia, but the new

program provides special training about dementia

and about services for people with dementia for

Info-Line staff members who handle those calls.

Texas has an Alzheimer’s telephone information

and referral program that is operated by the State

Department of Health. In 1988, the Texas Legislature mandated the development of a computerized

information and referral program for people with

dementia, and the Department of Health is developing that program.

Pennsylvania, New Hampshire, Kansas, and Delaware provide dementia-specific telephone information and referral programs through the same agencies that administer their public education programs

(see previous section). New Jersey funds a statewide

dementia-specific information and referral program

through its two Alzheimer’s diagnostic and assessment centers, and Florida funds information and

referrals for people with dementia through its four

memory disorders clinics.4 New York and California

also have statewide dementia-specific information

and referral programs that are discussed in a later

section of this chapter.

North Carolina funds a statewide telephone

information and referral program for people with

Alzheimer’s disease and other dementias through

the Duke University Medical Center’s Family Support program (290). Two social workers and a

secretary respond to approximately 200 calls a

month and provide information about dementia,

referrals to community service providers, and telephone counseling. The State-funded program also

provides public education, professional and caregiver training, and caregiver support groups.

Wisconsin funds a statewide information and

referral program for people with dementia and their

families through the Alzheimer’s Information and

dNew JerS@S centers and l?lorida’s memory &Ordm clinics are discussed along with other State regional Akhei.mer’s diagnostic and msessment

centers inch. 8.
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 233

Training Center, which is operated by the Alzheimer’s Association Chapter of Southeastern Wisconsin (263,410).5 The center maintains a computerized database of all the dementia-related services in

the State, organized by county. Callers, who include

family caregivers and health care and social service

professionals who work with dementia patients and

their families, can access the information and

referral program through a toll-free number. In

addition to providing information and referrals, the

center develops and distributes educational materials and provides training for professionals and

caregivers.

The Missouri Division of Aging has both a

statewide telephone information and referral program for elderly people and a statewide telephone

information and referral program for people with

Alzheimer’s disease and their caregivers (219).

Those programs are described inbox 7-A. Anecdotal

reports suggest that some caregivers of people with

dementia prefer to call a dementia-specific information and referral program. Other caregivers may be

reluctant to call a dementia-specific program because they are ashamed of their relative’s cognitive

impairment and prefer to call an information and

referral program that serves elderly people in general. Still other caregivers may not consider calling

a dementia-specific program because they do not

think of the individualasa‘‘person with dementia;’

probably this is especially likely if the individual has

physical impairments in addition to dementia. The

Missouri system with its two telephone numbers,

advertised separately but answered by the same staff

(all of whom have received training about dementia

and services for people with dementia) is a creative

way of providing information and referrals for

caregivers who have any of the three perspectives.

The close working relationship between the State

programs and the Alzheimer’s Association chapters

is another positive feature of the Missouri system.

In addition to maintaining telephone information

and referral programs, some States have published

resource directories that list available services for

people with dementia. In 1988, for example, New

Jersey published the third edition of its resource

directory, Alzheimer’s Disease: A New Jersey Directory of Services for Family Caregivers and

Health and Human Service Providers (601). Some

States publish directories of services for elderly

people, and these directories may also be helpful for

people with dementia (374).

In 1989, the Dementia Subcommittee of Michigan’s Chronic Disease Advisory Committee proposed the establishment of a statewide network of

agencies that would provide information and referrals and a variety of other services for people with

dementia and their caregivers (528). One component

of the subcommittee’s proposal is the designation of

one agency in each community as a ‘‘center for

information on dementia. ” According to the proposal, these centers would be the focal points for

information about dementia in the community. They

would be the local repository for printed and

audiovisual materials about dementia, lists of speakers, and other public education materials. They also

“would assist families in locating and obtaining

appropriate services” (528).

The Dementia Subcommittee anticipates that

organizations, such as Alzheimer’s Association

chapters, other voluntary organizations, AAAs, local

health departments, and Community Mental Health

Boards will apply to be designated as centers for

information on dementia (528). The subcommittee

proposes that it, along with several other groups,

should select one organization to be the dementia

information center in each community. The selection would be based on the applying organizations’

relative knowledge about dementia and services for

people with dementia, their relative ability to

maintain an up-to-date directory of available services, and evidence of support from other community

agencies for their selection.

The working group that developed the subcommittee’s proposal believed that although the centers

for information on dementia would not receive any

State funds, local organizations would nevertheless

apply to be designated as centers because of the

recognition and authority such designation would

bring them (l). The subcommittee’s proposal suggests that if no agency or organization applies from

a particular geographic area, the State could solicit

applications from agencies and organizations in that

area or ask a designated center in a nearby community to expand its catchment area (528).

The working group that developed the subcommittee’s proposal debated the advisability of having

the local centers for information on dementia

Swismmfi’s ~efim’s ~o~on and T- Center is described at greater length in box 8-Gin ch. 8.
234 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 7-A—Missouri’s Information and Referral Programs for Elderly People and for

People With Alzheimer's Disease

The Missouri Division of Aging has both a statewide telephone information and referral program for elderly

people and a statewide telephone information and referral program for people with Alzheimer’s disease and their

caregivers. The information and referral program for elderly people gets about 10,000 calls a year. The Alzheimer’s

“Helpline” was initiated in 1988, and received 100 calls the first day. Subsequently, the number of calls decreased

somewhat.

Calls to both of these Missouri information and referral programs are answered by the same staff. All staff

members at these programs receive 4 to 5 hours of training by the Missouri Alzheimer’s Association Coalition. The

training includes an overview of Alzheimer’s disease, including its causes and behavioral manifestations and its

impact on family caregivers; reasons why caregivers of people with Alzheimer’s disease might call the information

and referral programs; the kinds of questions these caregivers might ask potentially helpful services for people with

Alzheimer’s disease; and procedures for handling emergencies (e.g., the patient is lost or uncontrollably agitated

or the caregiver is sick or suicidal).

When a person calls either of the Missouri information and referral programs about an individual with

dementia, the program gives the person information about services and a referral to the Alzheimer’s Association

chapter or support group nearest the person’s home (Missouri now has Alzheimer’s Association chapters covering

all counties in the State). The program also sends a followup letter to the Alzheimer’s Association chapter to which

the caller is refereed unless the caller requests that no followup be made.

The general elderly and Alzheimer’s-specific telephone information and referral programs of the Missouri

Division of Aging both use a common computerized database of services. The database can be accessed at the

Missouri Division of Aging’s central office. Since it can also be accessed through computer terminals in about 100

of the division’s local offices, it is available to case managers who work in those offices, The Missouri Division

of Aging hopes that it will be possible in the near future to generate by computer the followup letters to Alzheimer’s

Association chapters about callers who have been referred to them.

SOURCES: B.L Forbis principal assistant to the director, Division of Aging, Missouri Department of Social Services, Jefferson City, MO,

personal communication, Dec. 6, 1988, Apr. 5, 1989, and June 14, 1989; K. Higley, executive director, St. Louis Alzheimer’s

Association Chapter, St. Louis, MO, letter to the Office of Technology Assessment, U.S. Congress, Washington, DC, Apr. 14,1989.

provide ‘gatekeeper-type’ outreach6 and case man- ations, and public and private agencies that provide

agement in addition to public education and information and referral (l). Including case management

and outreach as functions of the proposed centers

would have made it difficult for some of the local

organizations that were already providing public

education and information and referrals for people

with dementia and their caregivers to qualify as

centers, however, and the subcommittee’s final

proposal did not require the centers to provide these

functions (or even discuss the functions). The final

proposal does recommend that the centers be able to

contact service providers on behalf of dementia

patients and their families, if necessary, and to

follow-up to ensure that patients and families obtain

needed services.

Michigan’s proposed centers for information on

dementia would be required to work closely with

other individuals, groups, and agencies in the

community, including physicians, voluntary associservices for-people with dementia (528). The local

centers would also be required to work closely with

the two other components of the proposed statewide

network of agencies: regional centers and tertiary

centers. According to the proposal, the regional

centers would provide diagnosis, multidimensional

assessment, care planning, “short-term care management,” and counseling for families. The tertiary

centers would provide specialized diagnostic and

assessment services for dementia patients with

atypical or complicated symptoms and would conduct research, education, training, and autopsy

programs.

It is interesting to note that the Dementia Subcommittee’s proposal places the information and referral

functions in the local centers for information on

dementia and places the case management fictions

in the regional centers (528). This is opposite to

suggestions OTA has heard from other people who

6The following section discusses gatekeeper programs,
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 235

believe that although information and referral can be

provided effectively on a regional or statewide basis,

case management must be provided by local agencies (374,595).

Outreach Programs

~ Outreach, as noted earlier, means

case management agencies that administer Illinois’

Community Care Program, a statewide long-term

care program that is discussed later in this chapter.

Case Management Programs

IMl tiEil using an active method to identify 1

—— .

people with dementia and caregivers who need assistance but are

unlikely to respond to public educa- ices, 4) monitoring the services that

tion programs or to contact an I

information and referral program on their own.7 The

outreach programs that most closely match the needs

of isolated people with dementia and their caregivers

are “gatekeeper programs” that make use of the

observations of individuals who interact with many

people in the course of their regular activities-e. g.,

utility meter readers, mail carriers, apartment managers, police, pharmacists, grocers, and delivery

persons. Gatekeeper programs train such individuals

to identify isolated elderly people who may need

assistance and to notify a central agency. The central

agency then contacts the people, evaluates their

needs, and refers them to services (97,320,456,688).

The first gatekeeper program in the United States

was established in 1978 by a community mental

health center in Spokane, Washington.8 Since then,

gatekeeper programs have been established in many

other jurisdictions, often as joint initiatives of the

State department, division, or commission on aging,

AAAs, and utility companies (320). Although these

programs are not dementia-specific, they frequently

identify and refer isolated people with dementia

(97,320,456,685).

Illinois has a statewide system of gatekeeper

programs that are administered by the Illinois

Department on Aging and local AAAs in conjunction with several utility companies and rural cooperatives. With the addition in 1989 of Commonwealth

Edison in northern Illinois, the gatekeeper programs

now cover the whole State (148). The AAAs provide

training for the utility workers who are the gatekeepers and determine which local agency should receive

and respond to referrals from the gatekeepers. In

some localities, the calls are handled by the AAA,

whereas in other localities, they are handled by the

T

Case management, as noted earliI ● -– –1 er, is a process that includes five

I r core functions: 1) assessing a client’s needs, 2) planning care, 3)

arranging and coordinating servare provided, and 5) reassessing the client’s situation

as the need arises.

All States have at least one program that provides

case management for elderly people, although the

number of people who receive case management

through some of the State programs is very small

(354). Some States provide case management

through an independent case management program;

some States provide case management as a component of a program that also allocates services or

funding for services; and some States provide case

management through several different programs.

The number of people with dementia who receive

case management through State programs is not

known.

As noted in chapters 1 and 3, the implementation

of case management functions varies depending on

the type of agency that provides the case management, the other functions of that agency, and other

factors. In State agencies that allocate services or

funding for services, case management provided in

conjunction with the administration of those benefits

sometimes consists primarily of administrative tasks

such as determining a client’s eligibility for services

and funding, authorizing the services and funding,

and monitoring and accounting for them. Many of

the case managers who work for such agencies

perceive themselves not just as administrative agents

but as professional helpers who assist clients in

defining their service needs and locating and arranging appropriate services (47). OTA has no reason to

dispute these case managers’ perception that the

case management they provide has both administrative and clinical/advocacy components, although

case management in such agencies is undoubtedly

more likely than case management provided by an

TAs not~ in ChS. I ~d 3, some programs that are called “outreach” programs by the agencies that provide t.he~ g., lectures given by agency

staff to senior citizens or other community group%are considered public education programs in this report.

s~e sw~e gat&e~~ program is discussed in box 8-C inch. 8.
236 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

independent case management program to consist

primarily of administrative tasks.

A 1987 survey of the 50 States and the District of

Columbia conducted by the Intergovernmental

Health Policy Project found that States were paying

for case management for elderly people with funds

from many different sources (353,354). Some States

were paying for case management as an optional

Medicaid benefit (allowed since 1986) or through a

Medicaid 2176 waiver (both these funding sources

are discussed below); 33 States were paying for case

management with Older Americans Act funds; 32

States were paying for case management with State

general funds; and 23 States were paying for case

management with Social Service Block Grant funds.

The case management that States were paying for

was administered at the State level by different

agencies in different States and by several agencies

in some States. These agencies include the State

department, division, or office on aging, the State

Medicaid agency, and the State department of

health, social services, or human services (353,354).

At the local level, the case management that States

were paying for was provided to clients by a variety

of agencies, including local offices of various State

and county departments, city government agencies,

AAAs, and many types of private agencies. Many

States reported providing case management through

several different local agencies. A few States reported contracting with individual nurses to provide

case management.

As of October 1987, 15 States were paying for

case management as an optional Medicaid benefit

(819). OTA is not aware of any data on the number

of people with dementia who receive case management that is paid for as an optional State Medicaid

benefit, but some people with dementia probably do

receive this benefit. To be eligible for case management as a Medicaid benefit, one must meet the

State’s Medicaid financial eligibility criteria, and

the allowable levels of income and assets for

Medicaid eligibility are low in some States and very

low in other States.9

The Medicaid 2176 waiver program was enacted

by Congress in 1981 to allow States to apply for

waivers of Medicaid regulations so they could

provide a coordinated package of home and community-based services for individuals who otherwise would be at risk of nursing home placement or

who are already in an institution (819). A State with

a Medicaid 2176 waiver:

●

●

●

may use Medicaid funds to pay for services that

are not ordinarily covered by Medicaid;

may use Medicaid funds to pay for services for

some Medicaid beneficiaries and not others, so

that benefits can be targeted; and

may use a higher income standard to determine

individuals’ ‘eligibility for services under the

2176 waiver program than is used to determine

eligibility for other Medicaid services.

As of February 1988, there were 45 Medicaid

2176 waiver programs serving elderly and disabled

people in 36 States (some States had more than one

such program) (819). Thirty-six of these 2176 waiver programs provided case management, and many

of the waiver programs provided services that are

sometimes needed for people with dementia, including homemaker services (28 programs), personal

care (20 programs), adult day care (30 programs),

and respite care (28 programs). In fiscal year 1986,

Medicaid 2176 waiver programs across the country

served a total of 78,000 elderly and disabled people

(819).

Ohio’s Pre-Admission Screening System Providing Options and Resources Today (PASSPORT)

program has a Medicaid 2176 waiver to provide case

management and an expanded package of services

for people who are eligible for Medicaid-covered

nursing home care but choose to remain at home

(622). At the State level, the PASSPORT program is

administered by the Ohio Department of Aging. At

the local level, it is most often administered by

AAAs. Case managers in the AAAs and other local

agencies that administer the program provide an

assessment and a service plan for each client,

arrange the necessary services for the client, and

monitor the service providers and the client on a

continuing basis. The local agencies also contract

$’As of 1987, allowable mon~y income levels for Medicaid eligibility ranged from $253 in North @olina to $580 h c~orti ad $652 ~ ~~

Allowable assets levels ranged from $1,500 to $1,800 (826). Some States alSO allow Medicaid eligibility for people who are ‘‘medically needy’ ‘—i.e.,

they have medical expenses that reduce their incomes to Medicaid eligibili~ levels. For further information on this topic, the interested reader is refereed

to a 1987 publication of the Congressional Research Service, prepared by the National Governors’ Association, Medicaid Eligibility for the EIderly in

Need of Long-Term Care (826).
Chapter 7--State Programs and State and Community Service Systems That Link People to Services .237

with other community agencies to provide services

for PASSPORT clients (623).

As of September 1989, the PASSPORT program

was in effect in only 12 Ohio counties and PASSPORT services were available only to people with

income and assets low enough to qualify for

Medicaid in Ohio. Ohio has applied to the Federal

Government for a waiver to expand the PASSPORT

program statewide and to make the program’s

services available to people with incomes up to $718

per month. People with monthly incomes above that

amount would also be able to receive services

through the program if they used their own income

above $718 per month to pay for services (622).

Medicaid 2176 waiver programs are undoubtedly

a valuable resource in linking some people with

dementia to services. On the other hand, many

people with dementia (like many other elderly and

disabled people) are not eligible for Medicaid 2176

waiver programs because they do not meet the

eligibility requirements for Medicaid-funded nursing home care (e.g., requirements with respect to

their medical condition, functional impairments, and

financial resources). Two 1985 studies of Medicaid

2176 waiver programs that serve elderly and disabled people found that only 5 percent of the waiver

program participants had a primary diagnosis of a

mental disorder-a category that included cognitive

impairments and senility (131,446). It is likely,

however, that Medicaid 2176 waiver programs serve

some people who are demented but who do not have

a primary diagnosis of a dementing disorder.

Existing Medicaid 2176 waiver programs such as

the PASSPORT program in Ohio would not have the

capacity to serve all people with Alzheimer’s

disease and other dementing disorders even if the

waiver programs’ eligibility criteria were changed to

allow them to do so. In 1987, in commenting on

Ohio’s PASSPORT program, the Ohio Department

on Aging noted, for example, ‘‘even if the entire

caseloads of the four waiver sites were reserved for

Alzheimer’s patients, the available resources could

respond to less than 1 percent of the need of Ohio’s

Alzheimer’s population” (621).

Pennsylvania’s Long-Term Care Assessment and

Management Program (LAMP) is similar in many

ways to Ohio’s PASSPORT program, but it does not

have a Medicaid 2176 waiver and is paid for solely

with State funds (354). Pennsylvania’s LAMP

program offers case management and a range of

services to elderly people who are eligible for

Medicaid-funded nursing home care but choose to

remain at home. The program is jointly administered

by Pennsylvania’s Departments of Aging and Public

Welfare. The State of Pennsylvania contracts with

local agencies to be designated as LAMP sites and

to provide assessment and ongoing case management. For each client, the local LAMP agencies

provide a comprehensive assessment, develop a plan

of care, and arrange and monitor services. The

LAMP sites contract with community agencies to

provide other services. In general, the cost of

services provided to LAMP clients must be less than

45 percent of the cost of nursing home care. State

lottery funds are used to pay for services for LAMP

clients when no other source of funding is available

(505,562,651). A small study based on a probability

sample of 27 people served by Pennsylvania’s

LAMP program in 1987 found that half had moderate or severe dementia (505).

Any local agency can be designated as a LAMP

site, as long as it is capable of carrying out the

required functions and is not a service provider.

LAMP sites determine people’s eligibility for nursing home care, so in selecting LAMP sites, Pennsylvania must evaluate whether a potential LAMP

agency has any potential conflict of interest in

performing that function. In 1987, all but one of the

local LAMP agencies were AAAs, and in 1988, all

the LAMP agencies were AAAs (652).

States With Numerous Linking Programs

Certain States, notably New York and California,

have numerous State programs that link at least

some people with dementia to services. The major

State linking programs in New York and California

are described in the following sections. The programs vary in terms of the kind of help they provide

and the people they serve. Some of the linking

programs in each State are dementia-specific, and

others are not.

In addition to programs that are funded and

administered by the State, there are many other

public and private programs and agencies in each of

the States that link people with dementia to services.

Some of these programs are listed at the end of each

section to give a sense of the large number and the

different types of linking programs in the State. It

should be noted that although there are some

positive consequences of having numerous linking
238 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

programs in the same State, a multiplicity of linking

programs may not always be a good thing, since the

linking programs themselves can become confusing

and add to the complexity and fragmentation of the

already complicated service environment.

New York State% Linking Programs

To OTA’s knowledge, New York State has eight

State programs that link at least some people with

dementia to services. New York State’s Department

of Health administers two dementia-specific programs that link people to services:

● the Alzheimer’s Disease Community Services

Program, and

. a program of Alzheimer’s Disease Assistance

Centers.

New York’s Alzheimer’s Disease Community Services Program, which began in 1986, provides grants

to eight Alzheimer’s Association chapters to furnish

public education and information and referral, in

addition to training and support for caregivers of

people with Alzheimer’s disease and other dementias. Since 1988, the State has also funded eight

Alzheimer’s Disease Assistance Centers that provide diagnosis, assessment, and ongoing case management for people with Alzheimer’s disease and

other dementias. Seven of the Alzheimer’s Disease

Assistance Centers are located in medical centers of

the State University of New York, and one is in a

nursing home. Each Alzheimer’s Disease Assistance

Center has an information clearinghouse that provides information about dementia and services for

people with dementia. Telephone information and

referrals are not the centers’ primary function, but

they do respond to requests from anyone for referrals

to services (608,248).

New York State’s eight Alzheimer’s Disease

Community Services Programs and eight Alzheimer’s

Disease Assistance Centers are situated throughout

the State (see figure 7-3), and anyone from any part

of the State can use any of the programs or centers.

New York State’s Department of Health considers

that some areas of the State are not adequately

covered by the existing programs and centers,

however, and plans are under way to fund additional

programs and centers (248).

In addition to these two dementia-specific programs, New York also has at least six other State

programs that are not dementia-specific but nevertheless link some people with dementia to services.

One of the programs is the Nursing Home Without

Walls Program (354,472). This program, begun in

1977, has had a Medicaid 2176 waiver since 1983.

The Nursing Home Without Walls Program currently provides case management and in-home

services for people of all ages who are sufficiently

impaired to be eligible for Medicaid-funded nursing

home care but choose to remain at home. At the State

level, the program is administered by New York

State’s Department of Social Services, Division of

Medical Assistance. At the local level, the program

is administered by a variety of community agencies.

As of 1986, the Nursing Home Without Walls

program existed in 51 of New York State’s 62

counties; the 95 local agencies that administered the

program included home health agencies (46 percent), nursing homes (35 percent), and hospitals (19

percent). Expenditures for Nursing Home Without

Walls clients are capped at 75 percent of the average

annual cost of nursing home care in the State, but a

1987 State law raised the cap for people with

Alzheimer’s disease to 100 percent of the cost of

nursing home care (354).

In addition to the Nursing Home Without Walls

Program, New York State’s Department. of Social

Services, Division of Medical Assistance, has another program that coordinates in-home and community services in order to maintain people at home

who otherwise might be admitted to a nursing home.

This program, the Community Alternative Systems

Agency (CASA) program, has designated a single

agency in certain communities to be the local entry

point for assessment and ongoing case management

for people who are eligible for Medicaid-funded

in-home services. Most CASAs are county departments of social services or other county government

agencies (122,354).

New York State’s Medicaid program, like that in

some other States, pays for case management (354).

People can be eligible for Medicaid-funded case

management without being so impaired that they are

eligible for Medicaid-funded nursing home care, but

they do have to meet Medicaid’s financial eligibility

criteria. As of 1987, individuals living in the

community had to have an income below $432 per

month to be eligible for Medicaid benefits, including

case management. People with higher incomes were

eligible only if their medical expenses reduced their

income to the Medicaid eligibility levels (i.e., they

were “medically needy”).
Chapter 7--State Programs and State and Community Service Systems That Link People to Services .239

Figure 7-3-Areas of New York Served by the State’s Alzheimer’s Disease Assistance Centers and Alzheimer’s

Disease Community Services Programs

ALZ

NEW YORK STATE

DEPARTMENT OF HEALTH

HEIMER’S DISEASE ASSISTANCE CENTE

NETWORK CATCHMENT AREA

NEW YORK STATE

DEPARTMENT OF HEALTH

COMMUNITY SERVICES PROGRAMS

NETWORK CATCHMENT AREA

m CAPITAL. DISTRICT~

iii C%imALw AcmA

■ NYC-A

❑ PJI’NMACCWTV-A

u ~Tm AcmA

L,” \ \ I

V“k._H

SOURCE: New York State Department of Health, Office of Public Health, Alzheimer’s Disease and Other Dementias Program, January 1990.
240 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

New York State’s Department of Social Services,

Division of Adult Services, pays for case management and in-home services for adults with incomes

that exceed Medicaid eligibility levels (in 1987, up

to 150 percent of the poverty level). This program is

funded with Federal Social Services Block Grant

monies and administered at the local level by county

departments of social services (354).

New York State’s Office on Aging funds two

statewide programs that are administered at the local

level by AAAs and provide case management and

other in-home and community services for people

who

●

●

are over age 60 and not eligible for Medicaid:

the Community Services for the Elderly (CSE)

program, and

the Expanded In-Home Services for the Elderly

(EISEP) program (354).10

AAAs in New York State also provide information

and referrals, and some provide case management,

using Federal Older Americans Act funds (354).

In addition to State linking programs, New York

has many other public and private programs and

agencies that link people with dementia to services.

They include the New York City Alzheimer’s

Resource Center,ll Alzheimer’s Association chapters, community health centers, community mental

health centers, hospitals, county and city government agencies, private social service and family

service agencies, home health agencies, and adult

day centers.

Two federally funded programs in New York

State also link people with dementia to services. One

is the Monroe County Long-Term Care Program in

Rochester, New York, which in 1988 was designated

as one of eight demonstration sites for the Medicare

Alzheimer’s Disease Demonstration. Like each of

the other Alzheimer’s demonstration sites, the

Monroe County Long-Term Care Program will

provide information and referrals, case management, and in-home and community services for

several hundred Alzheimer’s patients over a 3-year

period beginning in late 1989 (504). In addition,

New York State has 2 of the 15 Alzheimer’s Disease

Research Centers funded by the National Institute on

Aging; the centers are located at Mt. Sinai School of

Medicine and Columbia University, both in New

York City. The centers are primarily biomedical

research facilities, but they also provide educational

programs for the public and information and referrals for people who are involved in their clinical

research programs.

California’s Linking Programs

To OTA’s knowledge, California has seven State

programs that link at least some people with

dementia to services. Three of the programs serve

only or primarily people with dementia. First,

California’s Department of Health Services funds a

program of nine Alzheimer’s Disease Diagnostic

and Treatment Centers (225,335). 12 The nine centers provide diagnosis, assessment, and medical

treatment for people with Alzheimer’s and related

dementias, conduct biomedical and clinical research

on dementia, and train service providers. The centers

provide educational programs for community

groups and information and referrals for patients and

family caregivers. One of the centers provides

long-term case management. Three of the centers are

located on university campuses; two are at VA

medical centers; and the others are at a psychiatric

hospital, a rehabilitation hospital, a community

hospital, and a senior center.

Second, California’s Department of Aging funds

a program of Alzheimer’s Day Care Resource

Centers that provide public education, information

and referrals, and professional and caregiver education and training, as well as adult day care and respite

care for people with dementia (5,460,714). As of

1989, there were 26 Alzheimer’s Day Care Resource

Centers throughout California, administered by a

variety of public and private health care and social

service agencies. In 1990, 10 more centers will be

added, bringing the total to 36 centers.

Third, California’s Department of Mental Health

funds a network of regional resource centers for the

families and caregivers of brain-impaired adults.

The centers, which are modeled after Family Survival Project in San Francisco, provide public

education, information and referrals, case coordination, and other services for the families and other

10AS of 1$)8’7, the EISEP program served people with incomes between 150 and 250 percent of the POve@ level (354).

11’rhe New York Civ Alfieimer*s ResoW~e Centm is dis~~s~ in box 8.A in ~h. 80

l~or additio~ information on California’s Alzheirner’s Disease Diagnostic and Treatment Centers, see the Section on lt@OXld AIAeimer’S

diagnostic and assessment centers inch. 8.
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 241

caregivers of brain-impaired adults, the majority of

whom have dementia.13 As of 1989, there were 11

regional resource centers (including Family Survival Project) located throughout California (see

figure 7-4). Four of the centers are administered by

hospitals or rehabilitation centers; others are administered by an AAA, a Catholic Charities agency, and

other health care and social service agencies. Most

of the centers serve several counties. Eight centers

have toll-free telephone numbers, and several have

family consultants who are available to people in

rural parts of the centers’ catchment areas (199,

200,405).

The State of California has designated Family

Survival Project to serve not only as the Bay Area

Regional Resource Center but also as the Statewide

Resources Consultant. In the latter capacity, Family

Survival Project maintains an information clearinghouse on dementia and other conditions that cause

brain impairment and publishes a newsletter, fact

sheets, brochures, directories, and research reports

about services for brain-impaired adults and their

caregivers (199,200,405). It also refers callers to the

regional resource center designated to serve their

geographic area and responds to requests for information from callers outside the State.

Since its inception as a task force of families and

community leaders in 1976, Family Survival Project

has lobbied, often successfully, for improved services for people with dementia, other brain-impaired

adults, and their families. It maintains detailed

records of services that are needed but not available

to its clients. To a greater extent than any of the other

agencies OTA studied in the course of this assessment, Family Survival Project uses its client records

to point out to government officials and others the

need for specific services. The development of

California’s statewide network of regional resource

centers, completed in 1988, allows Family Survival

Project to compile information about patients, caregivers, service use, costs, and unmet service needs

for the State as a whole.

In addition to these three dementia-specific programs, California has four other State programs that

are not dementia-specific but nevertheless link at

least some people with dementia to services. The

Multipurpose Senior Services Program (MSSP),

which began in 1980, provides case management for

elderly people who meet Medi-Cal (California’s

Medicaid program) eligibility requirements for nursing home care but can be maintained at home with

services (101 ,354,534). MSSP pays for in-home and

other community services for its clients if the

services cannot be funded through any other source.

Total expenditures for MSSP clients are capped at

95 percent of the cost of nursing home care in the

State. MSSP has had a Medicaid 2176 waiver since

1983. Federal funds provided under the waiver are

channeled through the State Department of Health

Services to the Department of Aging which administers the program at the State level. The Federal

funds are matched with State funds. As of 1987,

there were 22 MSSP programs in 19 of the 58

counties of California. The programs are run by

county departments of health and social services,

other county and city government agencies, AAAs,

hospitals, and private, nonprofit agencies.

The California Department on Aging also administers the Linkages program, which provides information and referrals and case management for

elderly and disabled people who are at risk of

nursing home placement but not eligible for nursing

home care funded by Medi-Cal (California’s Medicaid program). In general, Linkages clients are less

impaired than MSSP clients. Linkages is funded

entirely with State money, and some funds are

available to purchase in-home and other community

services for Linkages clients (101,354).

As of 1987, there were 13 Linkages programs in

California. At the local level, the 13 programs were

administered by a variety of public and private

agencies: the City of Oakland Social Services

Department; Community Care Management Corp.

in Ukiah; Humbolt Senior Citizens Council in

Eureka; Senior Care Action Network in Long Beach;

Huntington Memorial Hospital in Pasadena;

Altamed Health Services Corp. in Los Angeles; Mt.

Zion Hospital and Medical Center in San Francisco;

San Mateo County Department of Health Services;

the San Diego County AAA; San Joaquin Department of Aging, Children’s, and Community Services; Jewish Family Services of Los Angeles;

Monterey County Department of Social Services;

and Westside Center for Independent Living in West
Figure 7-4---A Brochure Publicizing California’s 11 Regional Resource Centers for the Families and Caregivers of Brain-lmpaired Adults

Wherever

You Live,

There’s Help

Resources for

the Families and

Caregivers of

Brain-Impaired

Adults

Regional Resource Centers

operating in California

425 Bush Street Suite 500, San Francisco

CA 94108.(415) 434-3388, (800) 445-810 6

(CA) Serving Alameda, Contra Costa.

Man nt San Francisco, San Mateo and Santa

Clara Counties (Also State wide Resources

Consultant)

❑ Los Angeles Regional Resource Center for

Caregivers of Brain Impaired Adults

3715 McClintock, University Park, MC 0191

Los Angeles, CA 90089 0191 (213) 743-8-ii,

(800) 540-4442 (LA County only) Serving

Los Angeles Count y

continued

George Deukmejian, Governor

Clifford L. Allenby, Secretary

California Health and Welfare Agency

SOURCE: Family Survival Project, “Wherever You Live, There’s Help, “ California Department of Mental Health, Sacramento, CA.
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 243

Los Angeles. All but the last two agencies also run

MSSP programs (101).14

Another program of California’s Department on

Aging, the SEED Community Long-Term Care

Project 15 does not directly link individuals to services; instead, the SEED program encourages coordination of long-term care services in local communities, primarily through the development of integrated screening and intake procedures and the use

of a uniform assessment instrument by different

agencies that provide services (101,354,714). In

1986, the State Department on Aging designated 11

SEED communities. The SEED lead agency inmost

of the 11 communities was the AAA, but in 2

communities, it was the county department of social

services and in 1, the county department of health

services. Of the 11 SEED communities, 9 have an

MSSP program, and 7 have a Linkages program, but

these MSSP and Linkages programs are not necessarily administered by the SEED lead agency. In

some SEED communities, the program has served as

a catalyst for the coordination of programs of the

California Department on Aging (e.g., MSSP and

Linkages) and the involvement of agencies that

administer programs of the State Departments of

Social Services and Mental Health, and other

agencies.

The California Department on Aging also funds a

program of Community-based Respite Care Services

in eight areas of the State. The local agencies that

administer this program recruit and train respite care

workers and provide information about and referrals

to respite care for adults with chronic physical or

mental impairments. Although the program is not

dementia-specific, people with dementia and their

caregivers are among its primary clients (460). The

local agencies that administer the program include

two AAAs, a hospital, a community health center,

two senior citizens agencies, and two agencies that

serve disabled people.

Finally, the California Department of Social

Services administers the In-Home Supportive Services (IHSS) program, which provides case management and in-home personal care and chore services

for people of all ages with monthly income of $726

to $1,051 (depending on their degree of functional

impairment). The program is funded with Federal

Social Services Block Grant monies and other State

funds. It is administered at the local level by county

departments of social services (354).

In the early 1980s, an attempt was made to

consolidate long-term care services for elderly and

disabled people in California under a single State

department. In 1982, the California Legislature

passed a bill (AB 2860) to create a State Department

of Aging and Long-Term Care and to authorize the

new department to pool funds from various sources

to provide services for elderly and disabled people.

The 1982 bill created a task force to make recommendations to the governor and the legislature

pertaining to the implementation of its provisions. In

the following year, however, agreements and compromises that had been worked out previously

among the interest groups that had supported the bill

broke down. The greatest disagreement occurred

between aging and disability interest groups, each of

which feared that implementation of the bill might

reduce overall funding for services for its constituents. Because of the disagreement, the California

Legislature passed a substitute bill (AB 2226) in

1984. The new bill created a Division of Long-Term

Care in California’s Department on Aging and

assigned that department primary responsibility for

developing a long-term care system, but it abandoned—at least temporarily-the goal of consolidating all long-term care services into a single State

department. Instead, the bill authorized several

initiatives to coordinate services at the community

level (362,746). The Linkages and SEED programs

described earlier were two of those initiatives

(101,714).

In addition to State-funded and/or State-administered linking programs, California has many public

and private agencies that link people with dementia

to services. They include Alzheimer’s Association

chapters and other voluntary organizations that

represent people with dementia and their caregivers;

community mental health centers; community

health centers; local government agencies; hospitals; private social service, family service, and home

ld~~~ He~~ Semices, ~ ~~~~ he~th center ~ ~s ~gel= tit operates ~ MSSP program and a Linkages program, iS deseribed in box

8-E of ch. 8.

15when this proW~ was fust envision~, SEED Wm sel~t~ as ~ a~onyrn to describe the “service-enriched” areas that were to be the foeus of

the program. The Department continued to use the name SEED when the approach was broadened to include cxxnrnunities with only modest or moderate

resouree levels (714).
244 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

health agencies; and adult day centers. California

also has 2 of the 15 Alzheimer’s Disease Research

Centers funded by the National Institute on Aging;

they are located at the University of California in

San Diego, and the University of Southern California in Los Angeles. As noted in the discussion of

New York’s linking programs, Alzheimer’s Disease

Research Centers are primarily biomedical research

facilities, but they also provide educational programs about dementia for the public and information

and referrals for people who are involved in their

clinical research programs.

Summary and Implications for a

National System to Link People With

Dementia to Services

Many States have linking programs-i.e., public

education, information and referral, outreach, and

case management programs-that serve at least

some people with dementia. The programs are

diverse, but some generalizations can be made:

●

●

●

●

Some States have dementia-specific information and referral programs (sometimes in addition to the State’s information and referral

programs for elderly people or people of all

ages). State outreach and case management

programs generaIly are not dementia-specific,

however. (Public education about dementia and

services for people with dementia is, by definition, dementia-specific.)

Dementia-specific State programs tend to be

new, whereas many of the programs intended to

serve elderly and disabled people in general

have been in existence longer.

Many, although certainly not all, of the dementiaspecific programs (primarily public education

and information and referral programs) are

programs of State departments, divisions, or

commissions on aging. In contrast, case management programs, which generally are not dementia-specific, are administered and/or funded

by a variety of State agencies.

In many States, public education and information and referral are provided through the same

program, but active outreach and case management are provided through other programs.

Thus, the four functions identified by this OTA

assessment as essential components of an

effective linking system for people with dementia are not provided through the same

program.

Despite these generalizations, the main conclusion to be drawn from the preceding section is the

diversity of existing State linking programs. They

vary in terms of the State agencies that administer

and/or fund them, the local agencies that implement

them, the linking functions and other services they

provide, and the people they serve.

As noted at the beginning of this chapter, the

diversity of existing State linking programs makes it

difficult to design a national linking system that

would build on rather than duplicate or disrupt the

programs. Clearly, there is no single type of State

agency that administers most of the existing programs and is therefore the obvious choice to

administer a national linking system. State aging

agencies (departments, divisions, commissions, etc.)

probably administer more of the existing linking

programs than any other type of State agency, but

many other types of State agencies also administer

these programs. Moreover, in many States, several

State agencies administer linking programs. Each of

the State agencies that administers a linking program

has a constituency of clients that benefit from its

program and of agencies and individuals that implement the program at the community level, all of

whom have a stake in the continuation of the existing

program. If Congress mandated a single category of

agencies to constitute a national linking system, that

decision would undoubtedly engender resistance

from the State agencies that administer existing

linking programs. Likewise, such a decision would

engender resistance from the agencies and individuals that implement the existing State linking programs at the community level but were not chosen to

implement the national system.

The preceding discussion of State programs that

link people to services focused attention on the

States that have such programs. The number of

States that provide and/or fund public education,

information and referral, outreach, and case management programs that serve at least some people with

dementia is impressive and is growing. On the other

hand, it is also true that some States do not have

programs that link people with dementia to services

or have programs that only serve a small percentage

of all people with dementia and their caregivers. All

States have case management programs, for example, but many of the programs serve only people with

very low income and people who are so ill or

functionally impaired that they are eligible for

Medicaid-funded nursing home care. Therefore,
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 245

although many States have linking programs that

serve at least some people with dementia, many

people with dementia still are not served. In addition, since the four functions identified by this

assessment as essential components of an effective

linking system for people with dementia are not

provided through the same program, some people

with dementia and their caregivers “fall through the

cracks” between programs.

STATE AND COMMUNITY

SERVICE SYSTEMS

In addition to, or instead of, establishing public

education, information and referral, outreach, and

case management programs that are added to the

existing service environment, some States and

communities have made fundamental changes in the

existing service environment by coordinating agencies’ functions and pooling funding sources to create

a consolidated service system. These systems,

through which people are connected to services, are

often referred to as ‘long-term care systems. ” They

generally connect their clients to a range of services,

including many of the health care, long-term care,

social, and other services that may be needed for a

person with dementia.

Several topics related to State and community

consolidated service systems are addressed in the

following sections. The first topic considered is why

some States and communities have created consolidated service systems. The second is what types of

changes are involved in developing such systems.

Also discussed below are the consolidated long-term

care service systems in three States (Oregon, Wisconsin, and Illinois) and four communities. The

concluding section of the chapter discusses some

findings of long-term care demonstration projects

that have influenced the development of State and

community service systems.

Each of these topics could be the subject of a full

report. OTA’s objective here is only to provide a

brief overview of State and community service

systems in order to point out some of the ways in

which such systems differ from the linking programs

described in the previous section of this chapter and

to consider the current and potential role of such

systems in linking people with dementia to services.

For more information on State long-term care

service systems, the interested reader is referred to

the following publications:

●

●

●

Building Affordable Long-Term Care Alternatives: Integrating State Policy, published by the

National Governors’ Association (586).

State Long-Term Care Reform: Development of

Community Care Systems in Six States, published by the National Governors’ Association

(587).

State Financing of Long-Term Care Services

for the Elderly; published by the Intergovernmental Health Policy Project (353,354).

OTA’s analysis below draws heavily from these

publications.

Why Some States and Communities Have

Developed Consolidated Long-Term Care

Service Systems

The States and communities that have developed

consolidated long-term care service systems have

done so for several interrelated reasons. One reason

is to reduce the complexity and fragmentation of the

service environment so that people can connect to

the services they need (353,362,587). The extreme

complexity of the service environment in many

communities was discussed in chapters, 1 and 2.

Health care, long-term care, social, and other services may be provided by many different agencies and

individuals. Likewise, there are many potential

sources of funding for services. Each service provider and funding source has complex rules that

restrict what services are provided or paid for and

who can receive them. Often, an individual’s service

needs cannot be met by a single agency, so the

person must either interact with several different

agencies or forgo needed services. By coordinating

agencies’ functions and pooling funding sources,

some States and communities hope to make it easier

for people to connect to appropriate services.

A second reason why some States and communities have developed consolidated long-term care

service systems is to limit unnecessary use of

nursing home care. In 1986, public spending for

nursing home care amounted to $18.1 billion-87

percent ($15.8 billion) of which was from Medicaid

(828). Because of the growth in the size of the

elderly population-particularly growth in the age

group over 85, which is most at risk of nursing home

placement—there has been, and continues to be,

concern that nursing home use will increase greatly

and that Medicaid expenditures for nursing home

care will rise accordingly (362,372). To address that
246 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

problem, States have instituted a variety of measures. Many States have certificate-of-need programs

to limit the creation of new nursing home beds.

Many States have also initiated nursing home

preadmission screening programs to evaluate nursing home applicants and divert those who can be

cared for at home (666). In addition, some States and

communities have developed consolidated service

systems to facilitate the targeting of services to

people at risk of nursing home placement, thereby

enabling them to remain in their homes (362,372).

A third reason why some States and communities

have developed consolidated long-term care service

systems is to create an organizational and administrative structure that allows for efficient and appropriate use of limited services and funds:

●

●

●

by targeting available services to the people

who need them most, especially those at risk of

nursing home placement;

by avoiding duplication of local agencies’

efforts, particularly repeated assessments of the

same person by each agency that provides

services for the person; and

by increasing administrative control and accountability for the use of public funds.

A major objective of the States that have developed

consolidated long-term care service systems is to

shift some of the public funds now spent on nursing

home care to in-home and community services

(353,362,374,587). (As of 1987, more than 80

percent of Federal and State spending for long-term

care for elderly people went for nursing home care,

leaving less than 20 percent for in-home and other

community services (353).)

None of the reasons and objectives just cited are

incompatible with the goal of linking at least some

people with dementia to appropriate services. The

fact that some State and community service systems

focus on limiting the use of nursing home care and

targeting services to people who are eligible for or at

risk of nursing home placement means, however,

that the linking functions performed by these systems often are not available to people who are not

eligible for or at risk of institutionalization-ineluding many people with dementia.

Changes Involved in Developing a

Consolidated Service System

The development of a consolidated service system may involve several different kinds of changes

in agencies and procedures at the State and community level, including:

the designation of a single State agency to

administer all the Federal and State programs

that pay for services;

the designation of a single agency at the

community level to administer services paid for

by all Federal, State, and local government

programs;

the pooling of funds from different programs to

pay for services; and

the establishment of a uniform client assessment procedure, including the use of a common

assessment instrument, for services paid for by

various programs.

Historically, each State has established agencies

to administer health care, mental health, social

service, public assistance, and other programs.

Typically, the structure and functions of existing

State agencies has been adjusted to incorporate new

Federal and State programs enacted over the years.

For each new Federal or State program that has been

established, some States have created a new State

agency; some have created a new division in an

existing State agency; and some have expanded the

functions of an existing State agency. The creation

of new State agencies or divisions to administer new

Federal programs has been fostered by the distinct

and often inflexible rules and regulations that have

accompanied each new Federal program (353).

In 1987, the Intergovernmental Health Policy

Project surveyed the 50 States and the District of

Columbia to determine how they were financing and

administering services for elderly people (353). The

survey gathered information about State agencies

that administer Medicaid, Medicaid 2176 waiver

programs, the Older Americans Act, the Social

Services Block Grant, State supplemental payments

to elderly people receiving Federal Supplemental

Security Income payments, and State general funds

that pay for services for elderly people. The 1987

survey found that:

● 1 State (Oregon) was using the same agency to

administer all the Federal and State-funded

programs and services that were studied,
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 247

19 States were using 2 State agencies or

divisions to administer the programs and services,

24 States were using 3 agencies or divisions to

administer the programs and services, and

7 States were using 4 agencies or divisions to

administer the programs and services (354).

The 1986 survey did not ask about State agencies

that admini “ “ster mental health services or services for

nonelderly disabled adults. In some States, those

services, which may benefit people with dementia,

are administered by still other State agencies.

The designation of a single State agency to

administer all the Federal and State programs that

pay for services for elderly and disabled people

requires a State to overcome substantial barriers—

barriers created by the inflexible rules and regulations of each Federal program, barriers created by

organizational and turf issues that cause resistance to

change in existing State agencies, and barriers

created by concerns of various interest groups that

the consolidation of programs and funding sources

at the State level will reduce overall funding for the

client population they represent. For these and other

reasons, States that have developed consolidated

service systems have moved slowly in merging

administrative authority for different programs at the

State level, and some of those States have instead

created an umbrella State agency or an interagency

coordinating group to oversee the different State

agencies that admini “ “ster the programs (587).

The other three kinds of changes that may be

involved in creating a consolidated service system—

the designation of a single agency at the community

level to administer services funded by all Federal,

State, and local programs, the pooling of funds from

different programs to pay for services, and the

establishment of a uniform client assessment procedure-also require overcoming barriers created by

inflexible program rules and regulations, by organizational and turf issues that cause resistance to

change, and by interest group concerns. States and

communities that have developed consolidated service systems generally have moved slowly and

incrementally in implementing these changes.

Three other mechanisms are frequently part of

consolidated service systems, but, unlike the four

kinds of changes already discussed, these three

mechanisms can be implemented by a single agency

in a State or community without changing the

structure or functions of other agencies. The three

mechanisms are:

● case management,

● nursing home preadmission screening, and

. contracts with service providers.

All State and community consolidated service

systems include case management as a major

component. In fact, consolidated service systems are

sometimes referred to as “case-managed systems. ”

The role of the case manager in such systems is often

quite different from the traditional case management

role in which the case manager coordinates or

“brokers” services from various community agencies for an individual client; in a consolidated

service system, a case manager more often administers and allocates services that are already coordinated by the structure and functions of the system.

Many analysts have noted the distinction between

the coordination or brokering of services for an

individual client from various community agencies

and coordination of services through a service

system (see, e.g., Austin et al. (47), Kodner and

Feldman (423), and Zawadski (939)). That distinction is not always recognized, however, and some

people wrongly assume that case management by

itself creates a consolidated service system.

State consolidated service systems generally include nursing home preadmission screening programs as a component. As of 1986,29 States and the

District of Columbia had nursing home preadmission screening programs; in addition, some States

had programs to coordinate or fund in-home and

community services for people whom the preadmission screening program found ineligible for nursing

home care (356). In 1987, a Federal law was enacted

that required States to establish a nursing home

preadmission screening program to identify mentally ill and mentally retarded people for whom

nursing home placement is inappropriate (Public

Law 100-203). OTA does not know how the

preadmission screening programs that are developed

in response to the 1987 law will function with

respect to preadmission screening programs that

predated the law; nor does OTA know how many of

the new programs coordinate, provide, or fund

in-home and community services for people who are

ineligible for nursing home care. Clearly, however,

not all nursing home preadmission screening programs are part of a consolidated service system, and

by themselves, nursing home preadmission screen-
248 . Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

ing programs do not create a consolidated service

system.

Lastly, most State and community consolidated

service systems contract with agencies and individuals to furnish services to their clients. Some agencies

that are not part of a consolidated service system also

contract with other agencies to provide services for

their clients. Although an agency’s contracts with

other service providers undoubtedly facilitate access

to care for the agency’s clients, contracts for services

do not by themselves create a consolidated service

system.

Three States' Consolidated Service Systems

Oregon, Wisconsin, and Illinois are three States

that have gone farther than most in creating consolidated service systems through which people are

connected to services. Their service systems are

described briefly below. The emphasis in the discussion is on the changes that were made to develop

each system and the difficult organizational and turf

issues that had to be addressed in the process.

Oregon's Consolidated Long-Term Care

Service System

In Oregon, all publicly funded long-term care

services for elderly and disabled people are administered by a single agency at the State level—the

Division of Senior Services-and a single local

agency in most communities (433). The Division of

Senior Services and the local agencies administer

Medicaid, a large Medicaid 2176 waiver program,

Older Americans Act funds, Social Services Block

Grant funds, and Oregon Project Independence, a

State-funded program that provides in-home and

community services for people over age 60.

The development of Oregon’s consolidated service system began in the mid-1970s as a result of the

State’s concern about increasing nursing home costs

(434). In 1975, Oregon Project Independence was

established by the State with the objective of

substituting in-home and community services for

nursing home care. In 1980, Oregon initiated a

nursing home preadmission screening program and

a long-term care demonstration project that paid for

expanded in-home and community services in four

counties; the main focus of Oregon Project Independence was coordination of the various agencies

that provided and paid for services-’ ‘getting everybody to talk the same language and plan the same

actions” (434).

Late in 1980, the Oregon Department of Human

Resources developed a proposal to consolidate the

administration of aging and long-term care services

in a single State agency. The proposal was rejected

by other State and local agencies and by advocates

for the elderly because they had not been involved in

the planning process. Following the proposal’s

rejection, the governor appointed a plannin g committee that met weekly for several months and

involved more than 100 people in its planning

process. The planning committee’s work and deliberations by the Oregon Legislature resultedina1981

law that created Oregon’s Division of Senior Services by merging the functions of the State aging

agency and the long-term care division of the State

Medicaid agency. Each AAA in Oregon that was

part of local government (i.e., counties or councils of

government) was given the option of becoming the

single agency to administer all publicly funded

services for elderly and disabled people at the local

level. Under the 1981 law, AAAs that were private

nonprofit organizations were allowed to administer

Older Americans Act and Oregon Project Independence services, but a district office of the Senior

Services Division still had to perform Medicaidrelated functions, including nursing home preadmission screening. Most AAAs that were given the

option of administering all the services chose to do

so. As of 1987, 11 of the Oregon’s 18 AAAs were

administering all publicly funded services for elderly and disabled people (434,587).

When the State law creating the Division of

Senior Services passed in 1981, Oregon applied for

a Medicaid 2176 waiver to increase the availability

of in-home and community services. Oregon’s

waiver proposal, which was based on the fourcounty demonstration project begun the previous

year, was approved by the Federal Government in

less than a month (434).

The implementation of all these changes led to

sigificant tension and disagreements among the

State agencies, AAAs, service providers, and aging

and disability advocacy groups in Oregon. In 1984,

the State took the unusual step of hiring a consultant

to conduct a formal negotiating process. That

process, in which representatives of each group met

for 1 day every other week for over 6 months,
Chapter 7-State Programs and State and Community Service Systems That Link People to Services ● 249

eventually resolved most of the major areas of

disagreement (434,587).

By combining Federal and State funds from

various programs, the State of Oregon can provide

case management and in-home and community

services to many elderly and disabled people. Still,

Oregon’s long-term care system does not serve

every person who needs help. Services generally are

targeted to people who are severely functionally

impaired and people with low incomes, although

some services are not means-tested or are provided

on a sliding-fee-scale basis to people with higher

incomes. Since 1983, the State of Oregon has

provided case management for some elderly and

disabled people who are not otherwise eligible for

services due to their income or level of impairment

(434,587). As of July 1989, Oregon had allocated

funds for in-home and community services for some

people with Alzheimer’s and related dementias who

are under age 60 and have not been eligible for

services previously (436).

Wisconsin’s Consolidated Long-Term Care

Service System

In Wisconsin, publicly funded long-term care

services are administered at the State level by three

units of the Wisconsin Department of Health and

Social Services: the Division of Health, which

administers Medicaid, and two bureaus of the

Division of Community Services, which administer

all other programs that provide in-home and community services (354,587). The coordination of these

services occurs primarily at the county level. County

government agencies administer Medicaid, Social

Services Block Grant funds, and several small

Medicaid 2176 waiver programs, as well as the

Community Options Program, a State-tided program described below. The State of Wisconsin has

six AAAs that are administratively separate from

county government but allocate Older Americans

Act funds to county government aging units.

In 1976, the Wisconsin Lieutenant Governor’s

office initiated demonstration projects in four counties to substitute in-home care for nursing home care.

Although the demonstration projects were considered unsuccessful by some people, in part because

they were not administered by county government,

they did create experience and knowledge about how

to provide community care (587).

In the late 1970s, Wisconsin had a very high ratio

of nursing home beds to elderly residents as compared to the ratio in other States, and Medicaid

spending for nursing home care was increasing

rapidly. To address that problem, the State convened

people from State and local agencies, researchers,

advocates, and nursing home administrators. According to one observer, the meetings resulted in

‘‘organizational fratricide and conceptual chaos:

Within minutes, these official planning sessions

evolved into the great ritual debates of long-term

care policy. Health care providers and social service

agencies quickly were accusing each other of failing

to integrate. The partisans of a particular functional

assessment tool rushed to ridicule the conceptual

flaws and inaccuracies of everybody else’s preferred

tool . . . The administrators of means-tested programs

belittled the lack of targeting of non-means-tested

programs. In one corner there was a centralization v.

decentralization debate. And everybody who was not

involved in the conceptual controversies was whispering to each other the real question, Who is going

to get the contracts? (594).

Having failed with this approach, the State of

Wisconsin tried instead asking consumers of longterm care services--elderly and physically disabled

people and families of developmentally disabled

people-what kinds of services and programs they

needed (594). State officials believe the system

finally put in place in Wisconsin reflects these

consumers’ preferences.

In 1981, the Wisconsin Legislature enacted a

moratorium on nursing home bed expansion. At the

same time, it established the Community Options

Program. The Community Options Program is a

State-funded program that provides case management and in-home and community services for

elderly, physically disabled, developmentally disabled, chronically mentally ill, and chemically

dependent people, including both children and

adults. It began in eight counties in 1982 and was

extended to the whole State by 1986. The Community Options Program makes State funds available to

counties to provide case management and services

for people who are assessed as requiring nursing

home care. The State of Wisconsin does not specify

what services shall be covered, encouraging complete flexibility in meeting individual needs, but per

person expenditures averaged across a county’s

caseload cannot exceed the State’s share of the cost

of nursing home care for an individual (354,587).
250 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Counties in Wisconsin can administer the Community Options Program through the county social

services department (which administers other programs for elderly and physically disabled people) or

through a “county 51 board” (which administers

programs for mentally ill, developmentally disabled,

and chemically dependent People).l6 As of 1987, 80

percent of counties in the State were using a county

social services department to administer the Community Options Program, and 20 percent were using

a “county 51 board.” The State of Wisconsin does

not require that counties use a uniform client

assessment procedure, but there is a recommended

assessment instrument (587).

Like Oregon’s system, Wisconsin’s long-term

care service system targets services to people who

are severely functionally impaired and people with

low income (354,587). Services are provided free to

individuals with income below a given threshold and

on a sliding-fee-scale basis to individuals with

incomes above the threshold. Assessment and care

planning are provided to anyone who may need

long-term care, without regard for the person’s

income.

In 1986, the State of Wisconsin extended eligibility for case management and services through the

Community Options Program to people in the early

and middle stages of Alzheimer’s disease who are

not yet severely functionally impaired. In addition,

the State provides grants of up to $4,000 a year for

families who are caring for a person with dementia,

as long as the income of the individual and his or her

spouse is $40,000 or less. In some cases, the grant

funds are given directly to the families, but more

often they are used to purchase services for them.

Overall funding for the grant program is capped,

however, so not all families who are eligible actually

receive grants (587,918). As noted earlier in this

chapter, Wisconsin also funds the Alzheimer’s

Information and Training Center, which is operated

by the Southeastern Wisconsin Alzheimer’s Association Chapter.

Illinois’ Consolidated Long-Term Care

Service System

In Illinois, publicly funded long-term care services are administered at the State level by three State

agencies. Long-term care services for elderly people

are administered by the Illinois Department of

Public Aid (which administers Medicaid) and the

Illinois Department of Aging (which administers

Older Americans Act funds and Illinois’ Community

Care Program, which provides case management

and three services-homemaker, adult day, and

chore services-for people over age 60 who are

eligible for nursing home care). Services for disabled people under age 60 are administered by the

Illinois Department of Rehabilitation. At the State

level, the coordination of services administered by

these three agencies occurs through an interagency

coordinating group. At the local level, coordination

occurs through “case coordination units’ ’-public

and private agencies designated by the State to

implement the State’s Community Care Program

(587).

The development of Illinois’ long-term care

service system began in 1977 with the initiation of

pilot programs that provided in-home services in

three areas of the State and the passage of a bill to

provide certain in-home and adult day services on a

statewide basis. At first, the services were administered by the Illinois Department of Public Aid.

Because aging advocacy groups objected to the

“welfare stigma’ associated with that department,

however, administrative responsibility for the services was shifted in 1979 to the Illinois Department

on Aging. This department allocated funds for

services to the State’s 13 AAAs; and the AAAs, in

turn, provided case management and purchased

services for eligible clients. That arrangement lasted

1 year and was then replaced by a system in which

the State of Illinois contracted directly with community agencies to provide both case management and

services for eligible people (587)

Over time, waiting lists developed for services

provided by Illinois’ Community Care Program

(587). In 1982, a class action suit filed on behalf of

people on the waiting lists resulted in a court

decision that prohibited waiting lists for the program, in effect making it an entitlement program. To

control the overall cost of the Community Care

Program, the State of Illinois instituted sliding-scale

fees for services. The State also obtained more funds

for the program through a Medicaid 2176 waiver.

Lastly, the functions of case management and

service provision were separated to avoid the

16’’cOm& 51 bo~s~ ~ ~e IW~ ~uds desiyted lmder Chapter 51 of Wisconsin’s statutes to administer cornmuniv menti healh developmen~

disabilities, alcoholism, and drug abuse programs.
Chapter 7--State Programs and State and Community Service Systems That Link People to Services .251

possibility that case managers who worked for

agencies that provided services would authorize

more of their agencies’ services than clients needed.

The State of Illinois contracted directly with some

community agencies to be ‘case coordination units’

to provide client assessments, care planning, and

ongoing case management, and the State contracted

with other agencies to provide services. Case coordination units are not allowed to provide services for

Illinois’ Community Care Program.

As of 1987, one-third of Illinois’ 63 case coordination units were home health agencies; another

one-third were senior service agencies; and the

remainder were health care, mental health, family

service, and social service agencies. All the case

coordination units use a common client assessment

instrument. They do preadmission screening, but

they do not determine financial eligibility for

Medicaid, a function performed by local offices of

the Illinois Department of Public Aid (587).

Like Oregon’s and Wisconsin’s systems, Illinois’

consolidated service system targets long-term care

services to people who are severely fictionally

impaired and to people with low incomes. To be

eligible for services through Illinois’ Community

Care Program, individuals must have less than

$10,000 in liquid assets. Individuals whose monthly

income is below the Medicaid eligibility level

receive services without any charge. Those whose

monthly incomes exceed that level must pay a fee

based on a sliding scale. The case coordination units

receive Older Americans Act funds to provide

assessments and care planning for people who are

not eligible for the Community Care program (587).

Case managers who work for the case coordination

units receive special training about Alzheimer’s and

other dementias (345).

Four Communities> Service Systems

Some communities have developed or are developing service systems to rationalize the local service

environment, reduce duplication of efforts by agencies that deal with the same client, and help people

connect to appropriate services. The following

sections describe four such systems:

● in Tulsa, Oklahoma;

● in Linn County, Iowa

● in three counties in northern New Hampshire;

and

. in four counties in northwestern Ohio.

The systems described differ in ways that reflect the

characteristics and needs of the communities they

serve and the types of agencies already in place in

those communities. Two of the systems (the ones in

Tulsa, Oklahoma, and Linn County, Iowa) serve

elderly people in general, and two (those in northern

New Hampshire and northwestern Ohio) are dementiaspecific. Each of the four systems was developed

and is operated by a consortium of public and private

agencies.

Tulsa’s Long-Term Care Management Authority

(Oklahoma)

In 1987, Tulsa, Oklahoma, established the Nation’s first public long-term care management authority (557). Six agencies participated in its establishment:

1. the local AAA,

2. the State Medicaid agency,

3. the Veterans Administration (VA),

4. the city of Tulsa,

5. the county of Tulsa, and

6. the United Way.

Tulsa’s Long-Term Care Management Authority

was built on the success of an earlier effort to

coordinate home care services by a consortium of

local agencies (557). In 1983, five public and private

agencies that were funding home health aide,

homemaker, companion, and chore services in Tulsa

agreed to establish a joint process to contract for the

home care services they funded. The five agencies

agreed on a uniform definition of each service, units

of service, reporting requirements, and standards of

care for the services, and in 1984, they issued a joint

request for proposals to identify qualified home care

providers. A committee with representatives from

each agency and various citizen advisory groups

reviewed the proposals from home care agencies and

selected one agency to provide services that would

be paid for by the five funding agencies. Subsequently, a home care assessment team was setup to

monitor the quality of the services, and procedures

were developed to ascertain clients’ satisfaction

with services and the satisfaction of referral sources

17~e client satisfaction questio nnaire developed for this purpose is shown in figure 5-4 in ch. 5.

89-150 - 90 - 9
252 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

such as physicians and hospital discharge planners.

17

Based on the success of the previous effort,

Tulsa’s Long-Term Care Management Authority

was established in 1987 to create a single administrative structure that would pool funds and coordinate the delivery of services (557). The organizers of

the authority hope that it eventually will coordinate

the delivery of all services-acute and long-term

care services; in-home, institutional, and communitybased services; and publicly and privately funded

services. The Long-Term Care Management Authority’s first project is a pilot case management

program. The pilot program is funded by the Federal

Administration on Aging and is intended to provide

extended case management for elderly Medicaid and

VA clients and to coordinate services provided by

various agencies for the same client. A computerized

information management system has been developed for the pilot program.

Linn County's Case Management Demonstration

Project (Iowa)

The Linn County Case Management Demonstration Project was established in 1981 by a consortium

of public and private agencies that provide services

for elderly people in Linn county, a rural county in

Iowa (80). The agencies in the consortium include

the local AAA, which initiated the project; plus the

local mental health, family service, United Way,

substance abuse, and community action agencies;

two hospitals; three home health agencies; an adult

day center; a senior center; and two county government agencies. These agencies use a uniform assessment instrument to evaluate elderly people who

come to them for services. A case management team

composed of representatives of the agencies meets

regularly to review new cases, develop care plans,

and assign responsibility for managing each new

client care to one of the agencies in the consortium.

In the first years of the Linn County Case

Management Demonstration Project, the participating agencies took turns arranging and conducting

meetings of the case management team (80,463). In

1986, a coordinator was hired for the project by the

Linn County Department of Human Resource Development. Now the member agencies send completed assessment forms to the coordinator who

arranges the team’s bimonthly meetings. Having a

project coordinator has increased the number of

cases that can be reviewed and allows for more

efficient client tracking. The project has developed

a client appeal process and standards for case

management, confidentiality, and quality assurance.

In the view of its member agencies, the project has

reduced fragmentation and duplication of services

and minimized turf issues among the agencies.

The North Country Alzheimer’s Partnership

Project (New Hampshire)

The North Country Alzheimer’s Partnership Project, which links people with dementia and their

families to services in three rural counties in

northern New Hampshire, was created in 1987 by a

consortium of public and private agencies (551,614).

The project is funded by a 3-year grant from the

National Institute of Mental Health. The New

Hampshire Divisions of Mental Health and Developmental Services and Elderly and Adult Services

coordinate the administration and evaluation of the

project.

Individualized care plans are developed for clients

of the project on the basis of a comprehensive

in-home assessment conducted by nurses from local

home health agencies and a social worker from the

local Tri-County Community Action Agency. Ongoing case management is provided by Crotched

Mountain Community Care, Inc., a private, nonprofit case management agency. Information and

referral, public education, family support groups,

counseling, and support services are provided by

staff of the Tri-County Community Action Agency.

The project contracts with six home health agencies

to provide in-home services (551,614).

The ACCESS Project in Northwestern Ohio

The ACCESS Project in northwestern Ohio is a

project operated by a consortium of 10 public and

private agencies that have been receiving funds from

the State of Ohio since 1987 to provide people with

dementia and their caregivers in a four-county area

case management, caregiver education, and in-home

and adult day services (156,196). Family Service of

Northwest Ohio, a private, nonprofit agency, is the

lead agency for the project. State funding for the

project was $55,000 for 7 months in fiscal year 1987,

$110,000 for fiscal year 1988, and $88,000 a year for

fiscal years 1989 and 1990. For in-home and adult

IT~e client satisfaction questio nnaire developed for this purpose is shown in figure 5-4 in ch. 5.
Chapter 7-State Programs and State and Community Service Systems That Link People to Services ● 253

day services, the ACCESS Project charges fees to

patients and caregivers based on a sliding scale.

Everyone who receives services through the

ACCESS project receives case management (196).

The ACCESS Project initially charged patients and

their caregivers fees based on a sliding scale for the

initial patient assessment and ongoing case management, but eventually it stopped charging for these

functions. The project summary gave the following

rationale:

Due to the fact that the concept of assessment and

case management is ill-definied among the general

public, we had a great deal of difficulty explaining to

people why they had to pay for that service. As a

result . . . we consolidated assessment and the first

several hours of case management time and packaged it into what we called a “personal consultant”

model. We believed that the use of the “personal

consultant” model would be more appealing to the

types of caregivers we were getting. We also decided

that the ACCESS Project would assume the cost of

the service up to the first 6 hours of direct service

provided to each client. Through trying this, we

discovered that it was a bookkeeping headache to try

to keep track of when the first 6 hours of direct

service had run out, and once the first 6 hours had

expired, we faced the same reluctance among the

clients to pay for a service they still did not

understand. At this time, we have totally stopped

charging for that type of service and have assumed

its cost in the project (196).

Despite caregivers’ reluctance to pay for case

management, a 1989 survey of 69 caregivers who

had received ACCESS services found that the great

majority of them valued the information and emotional support provided by the project’s case managers (619).

ACCESS has a strong caregiver education program. One component of the program is educational

workshops conducted in various locations by the

East Center for Community Health. The other

component is in-home caregiver education, conducted primarily by a nurse from the Medical

College of Ohio who uses a video cassette recorder

and tapes about Alzheimer’s disease to provide

individualized caregiver education about dementia

and services for people with dementia (156).

Summary and Implications for a

National System To Link People With

Dementia to Services

The most important observation to be made about

the State and community consolidated service systems just described is that such systems are extremely diverse. The systems do have common

elements—including, in the State systems, a method

of coordinating the administration of various programs at the State level and, in all the systems,

methods for coordinating local agencies’ functions—

but there is great diversity even in these common

elements. Oregon coordinates the administration of

programs at the State level through a single State

agency; Wisconsin uses a human service umbrella

agency; and Illinois uses an interagency coordinating committee. Likewise, in each State, different

types of agencies have been designated to administer

services at the local level—AAAs in Oregon, county

social service departments and ‘county 51 boards”

in Wisconsin, and many different kinds of public and

private agencies in Illinois. In each of the community service systems, the consortium of public and

private agencies that created the system has devised

different methods for assigning responsibility for an

individual’s care to a certain agency or assigning

particular functions (e.g., client assessment, ongoing

case management, provision of services) to specific

agencies.

The second most important observation to be

made about the State and community consolidated

service systems is that considerable time and effort

were required to develop the systems, and difficult

organizational and turf issues had to be resolved in

the process. Most of the systems were developed

incrementally. Among the obstacles they faced

were: 1) inflexible requirements and regulations of

the Federal programs that pay for services, and 2)

administrative and organizational characteristics of

State agencies that were established in the past to

implement Federal program requirements and, once

established, are hard to change (436).

The State consolidated service systems described

in the preceding sections differ from the community

systems in several ways, although some of the

differences are more in degree than in kind. First, the

State systems coordinate services for elderly and

disabled people in general, or, in the case of

Wisconsin, all people who need long-term care; in

contrast, some of the community service systems are
254 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

dementia-specific. Second, the State systems generally coordinate only the functions of public agencies

or private agencies under contract to public agencies; in contrast, the community systems coordinate

the functions of both public and private agencies.

Lastly, the State systems rely more on formal

organizational structures and mandated procedures

for coordination; in contrast, the community systems

seem to rely more on the development of informal

working relationships among individual service

providers and agencies.

In some ways, it may be easier to create a

consolidated service system in a community than in

a State because of the smaller number of agencies

and individuals that must be involved in a community service system and because of the greater

potential for dealing with organizational and turf

issues through informal working relationships among

individuals. On the other hand, communities lack the

authority to allocate and target State funds for

services and to designate a single agency at the local

level to administer all Federal and State programs

that pay for services. These functions require the

involvement of the State.

If Congress designated a single category of

agencies to constitute a national linking system,

States and communities that have developed consolidated service systems which are administered by

agencies other than the designated agencies would

have to change their systems or, alternatively, accept

the existence of several systems-an outcome they

have already spent considerable time and effort to

avoid. Conversely, if Congress allowed each State to

select the agencies that would constitute the linking

system in that State, States that have developed

consolidated service systems could incorporate the

components of the linking system into their existing

service systems. Presumably, some States would

designate consortiums of agencies to constitute the

linking system in some communities, particularly

communities where a consortium of agencies has

already established a service system that links

people to services.

Consolidated service systems reduce the complexity and fragmentation of the service environment for the people they serve and generally make

it easier for those people to connect to appropriate

services, but many of the existing systems do not

serve all types of people with dementia. Some

systems do not serve people under age 60 or 65, and

many State systems focus primarily or exclusively

on low-income people and/or people who are

severely functionally impaired. Targeting public

funds for services to low-income people and people

who are severely functionally impaired seems entirely appropriate, but such targeting is not necessarily appropriate for linking functions. People with

dementia and their families need help in linking to

services at all stages of the patient’s illness, including the early stages when the patient is not severely

impaired. Likewise, patients and families with all

levels of income and assets and patients under age 60

or 65 need help in linking to appropriate services.

Another reason why some consolidated service

systems may not be completely effective in linking

people with dementia to services is because they

emphasize case management more than the three

other components that OTA has concluded are

essential for an effective linking system (i.e., public

education, information and referral, and outreach).

Although the local agencies that administer longterm care services in Oregon, Wisconsin, and Illinois

also provide or contract for information and referrals

(436,587), the primary emphasis in some systems

that administer long-term care services is on providing case management for people who are eligible for

the services.

Service systems that emphasize case management

more than other linking functions and provide case

management primarily for low-income and severely

impaired people do so partly because of resource

limitations and partly because of the systems’

objectives and mission (i.e., they are responsible for

allocating publicly funded services to people who

are eligible for the services). Any of the systems

could be modified to provide all four linking

functions, thus expanding their mission and objectives to include linking all kinds of people to

services. To do so would require more resources.

Lessons From Long-Term Demonstration

Projects for the Development and Operation of

Long-Term Care Service Systems

Beginning in the 1970s, Federal, State, and local

governments and private foundations sponsored

many long-term care demonstration projects. The

primary purpose of the projects was to demonstrate

that making available expanded in-home and community services could reduce the use of nursing

home care and ultimately reduce total expenditures
Chapter 7--State Programs and State and Community Service Systems That Link People to Services .255

for long-term care. Case management was a central

component of virtually all the demonstration projects.

Recently, Kemper and colleagues analyzed the

findings of 16 long-term care demonstration projects

(406,407). 18 They found that the use of nursing

homes was slightly lower among demonstration

participants (i.e., the people who received case

management and had access to expanded in-home

and community services) than for members of

control groups. On the other hand, the cost of case

management and expanded in-home and community

services for demonstration participants generally

exceeded any savings realized because of participants lower use of nursing homes.

Other commentators who have analyzed longterm care demonstration projects, including the

projects analyzed by Kemper and colleagues, have

reached essentially the same conclusions (see, e.g.,

Capitman (112), Hedrick and Inui (312), Piktialis

and MacAdam (662); and Weissert (896)). These

commentators have pointed out that in order to

produce cost savings, case management and expanded in-home and community services would

have to be targeted more precisely to people who

without the services would be very likely to be

admitted to a nursing home and that such precise

targeting is probably not possible at present.

I n summarizing their findings and pointing toward future directions for research and policy

debate, Kemper and colleagues said:

Based on a review of community care demonstrations, we conclude that expanding public financing

of community services beyond what already exists is

likely to increase costs. Small nursing home cost

reductions are more than offset by increased costs of

providing services to those who would remain at

home even without the expanded services. However,

expanded community services appear to make people better off and not to cause substantial reductions

in family caregiving. Policymakers should move

beyond asking whether expanded community care

will reduce costs to addressing how much community care society is willing to pay for, who should

receive it, and how it can be delivered efficiently

[emphasis added] (406).

Even though the long-term care demonstration

projects generally did not show that the government

could save money by substituting in-home and other

community services for nursing home care, many of

the demonstration projects evolved into ongoing

programs.

19 Furthermore, the long-term care demonstration projects produced valuable knowledge and

experience in implementing long-term care service

systems. That knowledge and experience, coupled

with knowledge and experience derived from ongoing State and community service systems, can be

helpful to other States and communities that are

developing long-term care service systems.

A particularly valuable source of information

about long-term care service systems is the National

Long-Term Care Channeling Demonstration (502).

The Channeling demonstration, which was funded

by the U.S. Department of Health and Human

Services from 1980 to 1985, tested two case

management models:

. a “basic” model, in which case managers

helped clients locate and arrange services but

had very limited funds to purchase services for

them; and

. a “financial control” model, in which case

managers not only helped clients locate and

arrange services but had substantial funds to

purchase services for them.

Case managers in the financial control model

were much more involved than case managers in the

basic model in allocating services and funding for

services. Therefore, some findings of the demonstration about differences between the two models are

relevant to one of the major policy questions raised

in chapter l—whether the agencies that are selected

to constitute a national linking system should also

allocate services and funding for services. Case

managers in the basic model, who were less involved

lg~e 16 projects Kem~r and colleagues reviewed were: 1) the Worcester Home careprojec~ 2) National Center for Health Services Rese=hDay

Care/Homemaker Experiment; 3) Triage; 4) Washington Community-Based Care; 5) the ACCESS project 6) Georgia Alternative Health Services; 7)

Wisconsin Community Care Organization 8) On I-ok Community Care Org anization for Dependent Adults; 9) Organizations Providing for Elderly

Needs; 10) the Multipurpose Stmior Semices Project (MSSP); 11) South Carolina Community Long-Term Care; 12) the Nursing Home Without Walls

Program; 13) New York City Home Care; 14) Florida Pentasm, 15) San Diego J_ong-Term Care; and 16) the Channeling Project (406,407).

l~~ge, fore~ple, evolved tit. Connecticut communiv Care, kc., a private nonprofit Cascmanagement agmcydiscussed ~ch. 1. on~ksefior

Health Services, as discussed in ch. 8, continues as a consolidated service delivery system in San Francisco and is currently being replicated in several

locations mtionwide. The Multipurpose Senior Services Project (MSSP) in California and the Nursing Home Without Walls in New York are ongoing

programs that were discussed earlier in this chapter.
256 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

in allocating services and funding for services, were

able to spend comparatively more time on directly

helping clients, whereas case managers in the

financial control model spent more time on administrative tasks and paperwork associated with ordering

services (502). Ongoing case management cost more

in the basic model ($51 per client per month) than in

the financial control model ($35 per client per

month). Obviously, however, the average cost to the

demonstration of services arranged for clients was

much lower in the basic model ($38 per client per

month) than in the financial control model ($471 per

client per month) (501). Both models reduced unmet

service needs and increased informal caregivers’

confidence that they would receive needed services

and their satisfaction with service arrangements, but

these outcomes were greater in the financial control

model than in the basic model (502).

The Channeling demonstration project also had

findings that bear on another policy question raised

in chapter 1—whether the agencies that are selected

to constitute a national linking system should or

should not be service-providing agencies (i.e., agencies that provide services that go beyond linking

functions). The Channeling demonstration project

was implemented in 10 sites across the country. Six

of the host agencies were AAAs (503). The other

four host agencies were service-providing agencies.

According to Channeling staff, case managers in the

four service-providing agencies were generally able

to maintain their independence and not did overuse

their own agencies’ services in preference to other

agencies’ services (30). This finding counters one of

the primary arguments against designating serviceproviding agencies to constitute a national linking

system.

The Channeling demonstration project also generated information that pertains to the implementation of case management in a service system,

including the impact of differences in the size of case

managers’ caseloads and the relative strengths and

weaknesses of nurses and social workers as case

managers in such systems (34,503). Other useful

findings of the demonstration pertain to procedures

for selecting and contracting with community service providers and monitoring the costs and quality of

services (503).20 All of these findings are relevant to

the design of a system to link people with dementia

to services.

CONCLUSION

As described in this chapter, many States have

programs that link at least some people with

dementia to services, and some States and communities have service systems that link some people with

dementia to services. The chapter has pointed out

both the existence and the diversity of those

programs and systems—factors that have sometimes

been given insufficient consideration in the development of Federal programs and policies for health

care, long-term care, social, and other services for

elderly and disabled people.

As noted throughout the chapter, the diversity of

State linking programs and State and community

services systems makes it difficult to design a

national linking system that will fit with the existing

programs and systems. The next chapter describes

11 categories of agencies Congress might designate

to constitute the linking system nationwide and

discusses several reasons for designating a single

category of agencies to constitute such a system. On

the other hand, by designating a single category of

agencies to constitute the system, Congress would

risk duplicating or disrupting existing State linking

programs and State and community service systems.

For this reason, Congress might choose instead to

allow each State to designate the agencies that will

constitute the linking system in that State.

There are important differences between linking

programs and consolidated service systems. Linking

programs are easier to establish than consolidated

service systems because the programs can be established at the State or community level without

substantially changing the structure, functions, or

relationships among existing agencies and without

engendering the intense organizational and turf

issues that must be overcome in the process of

creating a consolidated service system. On the other

hand, linking programs do nothing to reduce the

fundamental complexity and fragmentation of the

service environment, so the problems that patients

and families encounter in connecting to appropriate

~or more information about Channeling, the interested reader is referred to a publication of the U.S. Department of Health and Human Services,

The Evaluation of the National Long-Term Care Demonstration: Final Report: Executive Summary (502). That publication sumrnari zes the project

results and lists 25 additional evaluation reports on spec~lc aspects of the project and 12 tmining guides and technical assistance documents developed

for it.
Chapter 7--State Programs and State and Community Service Systems That Link People to Services ● 257

services because of the complexity and fragmentation of the service environment remain.

A few States and communities have gone a

considerable way in creating consolidated service

systems. Their purposes in developing these systems

have been to reduce the complexity and fragmentation of services at the community level; to connect

people to services they need; to gain control over

public, and especially State, expenditures for health

care and long-term care services; and ultimately to

shift some of the public funds now spent on nursing

home care to in-home and community services.

These systems would be particularly likely to be

disrupted if Congress mandated a single category of

agencies to constitute the national linking system.

Finally, the chapter has described linking programs and service systems that are intended to serve

elderly people or people of all ages and linking

programs and systems that are intended to serve only

people with dementia. These programs provide

alternate models for a national linking system. The

pros and cons of mandating a linking system that is

dementia-specific v. a system that is dementiacapable and dementia-friendly but not dementiaspecific are discussed in chapter 1.
Chapter 8

Agencies That Might Constitute a

Uniform National Linking System

CONTENTS

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . 261

AREA AGENCIES ON AGING . + ......... +.... 263

Overview of the Agencies . . . . . . . . . . . . . . . . . . . 263

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 266

Linking Functions . . . . . . . . .+... . . . . . . . . . . . . . 267

Role in Allocating Services and Funding . . . . . . 274

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 274

COMMUNITY MENTAL HEALTH CENTERS .276

overview of the Agencies . . . . . . . . . . . . . . . . . . . 276

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 278

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 279

Role in Allocating Services and Funding . . . . . . 282

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282

COMMUNITY HEALTH CENTERS ........... 283

Overview of the Agencies . . . . . . . . . . . . . . . . . . . 283

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 284

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 286

Role in Allocating Services and Funding . . . . . . 288

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 288

ALZHEIMER'S ASSOCIATIION CHAPTERS ... 289

Overview of the Agencies . . . . . . . . . . . . . . . . . . . 291

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 292

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 293

Role in Allocating Services and Funding . . . . . . 297

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 297

FAMILY SURVIVAL PROJECT ............... 299

Overview of the Agency . . . . . . . . . . . . . . . . . . . . 299

Who Is Seined . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 301

Role in Allocating Services and Funding . . . . . . 303

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 303

REGIONAL ALZHEIMER’S DIAGNOSTIC

AND ASSESSMENT CENTERS .......... 304

Overview of the Agencies . . . . . . . . . . . . . +..... 304

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 308

Page

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 308

Role in Allocating Services and Funding . . . . . . 310

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310

HOSPITAL-BASED GERIATRIC

ASSESSMENT PROGRAMS ............. 311

Overview of Agencies . . . . . . . . . . . . . . . . . . . . .. 312

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 314

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 316

Role in Allocating Services and Funding . . . . . . 317

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 317

HOME HEALTH AGENCIES . . . . . . . . . . . . . . . . . 318

Overview of the Agencies . . . . . . . . . . . . . . . . . . . 318

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 320

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 324

Role in Allocating Services and Funding . . . . . . 327

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 327

SOCIAL HEALTH MAINTENANCE

ORGANIZATIONS . . . . . . . . . . . . . . . . . . . . . . 329

Overview of the Agencies . . . . . . . . . . . . . . . . . . . 329

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 330

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 333

Role in Allocating Services and Funding . . . . . . 335

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 335

ON LOK SENIOR HEALTH SERVICES ....... 336

Overview of the Agency . . . . . . . . . . . . . . . . . . . . 336

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 337

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 338

Role in Allocating Services and Funding . . . . . . 338

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 339

ADULT DAY CENTERS . . . . . . . . . . . . . . . . . . . . . 339

Overview of the Agencies . . . . . . . . . . . . . . . . . . . 340

Who Is Served . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 341

Linking Functions . . . . . . . . . . . . . . . . . . . . . . . . . . 343

Role in Allocating Services and Funding . . . . . . 344

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 344
Boxes

Page

8-A. The New York City Alzheimer’s Resource Center . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 269

8-B. The Care Management Program of the Region IV Area Agency on Aging

in St. Joseph, Michigan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 272

8-C. The Spokane Community Mental Health Center’s Elderly Services Program,

Spokane, Washington . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 280

8-D. The Alzheimer’s Disease Project of Eastern Shore Rural Health System,

a Community Health Center in Virginia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 287

8-E. The Linking Programs of AltaMed Health Services, a Community Health Center

in Los Angeles, California . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 289

8-F. The Wisconsin Alzheimer’s Information and Training Center . . . . . . . . . . . . . . . . . . . . . . . . . . 290

8-G, The Cleveland Alzheimer’s Association Chapter’s Helpline . . . . . . . . . . . . . . . . . . . . . . . . . . . 294

8-H. The Alzheimer’s Family Consultants Program of the Palm Beach County,

Florida Alzheimer’s Association Chapter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 296

8-I. California’s Alzheimer’s Disease Diagnostic and Treatment Centers . . . . . . . . . . . . . . . . . . . . 306

8-J. Illinois’ Alzheimer’s Disease Assistance Centers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 307

8-K. An Inpatient Subacute Geriatric Assessment Unit: The Geriatric Evaluation Unit

at the Sepulveda VA Medical Center in Sepulveda, California . . . . . . . . . . . . . . . . . . . . . . . . . 313

8-L. An Outpatient Geriatric Service: The Geriatric Ambulatory Consultation Service

at Monroe Community Hospital in Rochester, New York . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 314

8-M. An Outpatient Geropsychiatric Clinic: The Geriatric and Family Services Clinic

at the University of Washington Hospital in Seattle, Washington . . . . . . . . . . . . . . . . . . . . . . 315

8-N. AL-C*A*R*E*: A Dementia-Specific Project of Two Home Health Agencies

in Washington, DC . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 324

8-O. The Alzheimer’s Disease Program of Visiting Nurse and Home Care, Inc.,

in Hartford, Connecticut . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 328

8-P. The Family Respite Center in Falls Church, Virginia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 342

Figure

Page

8-1. Location of Area Agencies on Aging . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 264

Tables

Page

8-1. Expressed Needs of People Who Called the Detroit Alzheimer’s Association Chapter’s

Helpline and Responses Given by the Helpline, 1987 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 295

8-2. Services Provided by Medicare-certified Home Health Agencies, 1986, N=5922 . . . . . . . . . 319
Chapter 8

Agencies That Might Constitute

a Uniform National Linking System

INTRODUCTION

As described in chapter 7, all States have linking

programs, and some States and local communities

have service systems that help families and others

locate and arrange services and sources of funding

for services for people with dementia. These State

and community programs and systems are extremely

diverse and are administered by a great variety of

agencies. Some of the programs and systems are

dementia-specific, and others are not. If Congress

established a national system to link people with

dementia to services, it could allow States to decide

which agencies should constitute the linking system

in their jurisdiction. Under this option, each State

could be given the choice of either: 1) selecting a

single category of agencies to constitute the linking

system statewide, or 2) selecting agencies of different types or a consortium of agencies to constitute

the linking system in different local communities.

An alternate approach that Congress might consider would be to establish a national linking system

in which the Federal Government would select a

single category of agencies to constitute the system

nationwide. Whether Congress should establish a

national linking system composed of a single

category of agencies designated by the Federal

Government or one composed of agencies designated by individual States is an important policy

issue discussed in chapter 1. A system composed of

a single category of agencies nationwide might be

more recognizable to the public than a system

composed of different types of agencies in different

States and might be better suited to helping longdistance caregivers of people with dementia find

services. One of the major drawbacks to this

approach is that the designation of a single category

of agencies to constitute the linking system nationwide would disrupt some existing State programs

and service systems, particularly programs and

systems that utilize agencies that are not selected or

that are unique to a particular State or locality.

This chapter analyzes 11 categories of agencies

that Congress could, at least in theory, designate as

the basis of a national linking system for people with

dementia if Congress chose to establish a system

composed of a single category of agencies nationwide:

1. area agencies on aging,

2. community mental health centers,

3. community health centers,

4. Alzheimer’s Association chapters,

5. Family Survival Project,

6. States’ regional Alzheimer’s diagnostic and

assessment centers,

7. hospital-based geriatric assessment programs,

8. home health agencies,

9. social health maintenance organizations,

10. On Lok Senior Health Services, and

11. adult day centers.

The Office of Technology Assessment (OTA) compiled this list by identifying categories of agencies

that met the following criteria:

●

●

●

agencies in the category are currently engaged

in linking at least some people with dementia to

services;

agencies in the category are discrete entities

that could be identified and funded directly

from the Federal level; and

agencies in the category are currently part of a

nationwide “system’ of agencies (e.g., area

agencies on aging, Alzheimer’s Association

chapters) or could conceivably be expanded to

serve the entire country (e.g., On Lok, Family

Survival Project).

OTA believes that the 11 categories of agencies

analyzed in this chapter include all the categories of

agencies that meet these criteria. Inclusion of a

category of agencies in this analysis does not mean

that OTA considers the category of agencies currently capable of constituting a national linking

system for people with dementia, but only that the

category of agencies meets the criteria for inclusion

in the analysis.

State and local government agencies, such as

State or local departments of health and social

services, are not included in the analysis in this

chapter; the reason is that States and local governments determine the functions of their own agencies,

and specific State and local government agencies

could not be designated by the Federal Government

–261–
262 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

to perform the linking functions. If Congress allowed States to designate the agencies that would

constitute the linking system, States could designate

any State or local government agency they chose.

Some of the State and local government agencies

that are currently involved in linking people with

dementia to services are described in chapter 7.

Each subsequent section of this chapter provides

a brief overview of a single category of agencies and

presents the available information about who is

served by that category of agencies and the extent to

which the agencies serve people with dementia.

Each section then analyzes its particular category of

agencies in terms of its current performance of the

four functions OTA deems critical to an effective

system to link people with dementia to services:

1. public education,

2. information and referral,

3. outreach, and

4. case management.

As defined in this report, public education means

providing general information to help people understand dementia and the kinds of services that maybe

helpful for individuals with dementia. Information

and referral means providing information about and

referrals to specific services and sources of funding

for services in the community. Outreach means

using an active method to identify people with

dementia and caregivers who need assistance but are

unlikely to respond to public education programs or

to contact an information and referral source on their

own. Case management means assessing a client’s

needs, developing a plan of care for the client,

arranging and coordinating services for the client,

monitoring and evaluating services the client receives, and reassessing the client’s situation as the

need arises.

An important policy question raised in chapter 1

of this report is whether the agencies that constitute

a national system to link people with dementia to

services should be agencies that allocate services

and funding for services. In the analysis that follows,

the extent to which each category of agencies

allocates services and funding for services is indicated.

OTA does not select any single category of

agencies as the category that should be designated to

constitute a national linking system. In fact, OTA’s

main conclusion from the analysis in this chapter is

that no single category of agencies is currently

capable of functioning effectively as a national

linking system for people with dementia and their

caregivers. As discussed in the following sections,

each of the 11 categories of agencies has positive

features that would contribute to its ability to serve

as the basis of a national linking system, but each

category also has one or more features that would

have to be modified for agencies in the category to

function effectively as such a system.

The identification of features of each of the 11

categories of agencies that would have to be

modified for agencies in the category to function

effectively as a national system to link people with

dementia to services is not intended to be critical of

the agencies. Linking people with dementia to

services is not the primary objective or even one of

the primary objectives of some of the 11 categories

of agencies, and each category of agencies has other

important objectives. Moreover, all of the agencies

operate within resource constraints. In the case of

some of the categories of agencies, it would take a

significant redirection of the agencies’ mission and

resources to function effectively as a national system

to link people with dementia to services. Such a

redirection of those agencies’ mission and resources

would compromise their ability to fulfill other

objectives, including the provision of services for

other client populations.

The congressional committees that requested this

study asked OTA to identify particular agencies that

are doing a good job of linking people with dementia

and their caregivers to services, and OTA found at

least one “model” agency in each of the 11

categories of agencies. In the case of Family

Survival Project, On Lok Senior Health Services,

and social health maintenance organizations, the

original agencies are themselves models. The ‘model’

agencies in the other categories are highlighted in

the shaded boxes in this chapter. The agencies in

each of these categories differ from one another in

many ways that affect their capacity to link people

with dementia to services, however; and it is

important to emphasize that the “model” agencies

are often the exception rather than the rule.

It is by no means clear that Congress should

designate a single category of agencies to constitute

a national linking system for people with dementia.

If Congress decided instead to allow States to

designate the agencies that would constitute the
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .263

linking system in their jurisdiction, the analysis in

this chapter might be useful to individual States in

selecting those agencies and in determiningg how the

agencies they selected might have to be modified to

function effectively in linking people with dementia

and their caregivers to services.

AREA AGENCIES ON AGING

Area agencies on aging (AAAs) are public or

private nonprofit agencies that are designated to

receive Federal Older Americans Act funds to plan,

coordinate, and arrange services for elderly people.

AAAs are part of a nationwide network of agencies

developed since the enactment of the Older Americans Act (Public Law 89-73) in 1965. This network,

often referred to as the “aging network, ” includes:

●

●

●

●

the Administration on Aging within the U.S.

Department of Health and Human Services,

57 State units on aging,

670 AAAs, and

thousands of local agencies and individuals that

provide services for elderly people through

contracts or other agreements with AAAs

(69,575).

OTA has included AAAs in its analysis of agencies

that might constitute a national system to link people

with dementia to services for several reasons. One

reason is that some AAAs provide public education,

information and referral, outreach, and case management for elderly people, including some people with

dementia. In addition, AAAs are mandated by the

Older Americans Act to provide for the establishment of information and referral services for elderly

people and to ensure that an ‘adequate proportion’

of the Older Americans Act funds allocated to the

AAA are spent for ‘services associated with access

to services, ’ including information and referral and

outreach for elderly people (818). The great majority

of people with Alzheimer’s disease and other

diseases that cause dementia are elderly,l and these

provisions of the Older Americans Act would seem

to include them.

Another reason that OTA has included AAAs in

its analysis of agencies that might constitute a

national system to link people with dementia to

services is that AAAs already exist in many parts of

the country. Also since AAAs are part of a nationwide network, they may be able to help longdistance caregivers locate and arrange services for a

person with dementia who lives in a different area of

the country.

One observer has suggested using AAAs and

other aging network agencies to create a nationwide

network of highly visible and easily accessible

“Aging Resource Centers for Help” to which

elderly people and their families could turn for

assistance:

Perhaps the most pressing need in our aging

society is for a highly visible distinctive site in every

community-that is part of a nationwide, intercommunity network of such sites-to which older

people and their families can turn for beginning the

process of getting help, reliably. The Title III

network is ideally situated to fulfill this need, if

it can become more visible, in a uniform fashion, in

communities nationwide. It has already evolved into

an infrastructure of agencies throughout the country

(68).

If there were such a nationwide network of resource

centers for elderly people, it probably could be

adapted to meet the needs of people with dementia

and their caregivers as well.

Overview of the Agencies

As originally enacted in 1965, Title III of the

Older Americans Act established a program of

Federal grants to States for the development of “a

comprehensive and coordinated system’ of services

to help elderly people live independently in their

communities and in their homes (818). The Older

Americans Act established the Administration on

Aging as the Federal agency responsible for carrying

out all of its provisions, including the administration

of the Title III program of Federal grants to States.

The Older Americans Act of 1965 required each

State to designate a single State agency--commonly

referred to as a‘ ‘State unit on aging ’’-to formulate

a plan for developing the system of community

services envisioned in the act and to oversee the use

of Title III funds in the State (818). Currently, there

is a State unit on aging in each of the 50 States and

in the District of Columbia, Puerto Rico, the Virgin

Islands, Guam, American Samoa, the Northern

Mariana Islands, and the Trust Territory of the

1~ ~~y~i~ of av~able &~ on tie ~rev~ence of dementia tit w= ~nducted for ()’J’A in 1985 found titindividti under age 65 accounted

for less than 1 percent of all people with severe dementia and less than 10 percent of all people with mild or moderate dementia (152).
264 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Pacific Islands (566). The names of State units on

aging vary from State-to-State (e.g., the Michigan

Office of Services to the Aging, the Nebraska

Department on Aging, the Mississippi Council on

Aging, the New Mexico State Agency on Aging, the

New Jersey Division on Aging) (566). State units on

aging operate not only as the agencies required by

the Older Americans Act, but also as components of

State and territorial government, and as a result, their

functions vary greatly in different States and territories.

The Older Americans Act has been amended 11

times since 1965. In 1973, the act was amended to

require each State or territory seeking Title III grants

to divide its jurisdiction into “planning and service

areas’ and to designate an AAA to plan, coordinate,

and arrange services for elderly people in each area.

Sparsely populated States or territories are allowed

to treat their jurisdictions as one planning and

service area and to designate only a single AAA, and

13 States and territories have chosen to do so; in

those areas, the State unit on aging serves as the

AAA (374,575). All but a few States have designated more than one AAA. New York, with 58

AAAs, has the most (575). Figure 8-1 shows the

distribution of AAAs throughout the country.

States with a similar number of residents over age

60 do not necessarily have the same number of

AAAs. For example, Georgia, Virginia, and Wisconsin, each of which has about 850,000 residents

over age 60, have 18, 26, and 6 AAAs respectively

(566). Likewise, South Dakota and Minnesota, each

of which has about 130,000 residents over age 60,

have 1 and 11 AAAs respectively. In terms of the

number of elderly people in their planning and

service area, AAAs are not uniform nationally.

About two-thirds of AAAs are public agencies,

including county or city government agencies and

council of government, regional planning, and

economic development agencies. The remaining

Figure 8-l—Location of Area Agencies on Aging

““ ~;~~; ;~--;~ ..-. .n

.-. -.-. —. —.-.

.e I . “ . “ “ rRFANsA~ “ v : “ *

. Q

L..”’-

SOURCE: National Association of Area Agencies on Aging, A Directory of State and Area Agencies on Aging, 1987-1989 (Washington, DC: 1988).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 265

one-third of the AAAs are private, nonprofit agencies (575). The term “area agency on aging” is a

generic one; the names of specific AAAs vary (e.g.,

Active Aging, Inc., Community Council of Greater

Dallas, District 5 AAA, Western Reserve AAA)

(566). Like State units on aging, many AAAs

operate not only as agencies required by the Older

Americans Act, but also as components of county or

city government or private agencies that have many

functions other than those mandated by the act. This

fact explains some of the differences among AAAs

that are discussed in this section.

Each AAA is required by the Older Americans

Act to prepare annually and submit to the State unit

on aging a plan for the development of a comprehensive and coordinated system of services for elderly

people in the AAA’s planning and service area

(818). The plan developed by an AAA must ensure

that elderly people in the AAA’s area have access to

the following services:

●

●

●

●

nutrition services, including congregate and

home-delivered meals;

access services, including transportation, outreach, and information and referral;

in-home services, including homemaker and

home health aides, visiting and telephone

reassurance, chore maintenance, in-home respite care, minor modification of homes to

accommodate frail, older individuals, and supportive services for families caring for older

people; and

community services, including adult day care,

senior centers, legal assistance, and adult protective services (374,566,818).

To implement its area plan, each AAA is required

by the Older Americans Act to arrange for the

provision of services with local providers and to

coordinate the services it provides or pays for with

the services of other community agencies and

voluntary organizations (818). AAAs often contract

with other agencies and individuals to provide Title

III-funded services. The Older Americans Act specifically forbids AAAs to provide, rather than to

contract for, a Title III-funded service unless the

service:

1. is directly related to an AAA’s administrative

functions,

2. can be provided at less cost by the AAA than

any other provider, or

3. in the judgment of the State unit on aging, must

be provided by an AAA to ensure an adequate

supply (818).

It has been estimated that in 1986, AAAs throughout

the country contracted with more than 26,000

service providers (212).

It is important to note that, in general, AAAs are

not required by the Older Americans Act to provide

services, but rather to plan and arrange for their

provision. Many AAAs do provide a variety of

services, sometimes for the three reasons just cited

and sometimes because, as mentioned earlier, AAAs

are public and private agencies that have many

functions other than those mandated by the Older

Americans Act. On the other hand, some AAAs

operate almost exclusively as planning agencies and

provide few, if any, services. Relevant to this point,

a 1987 study of 25 AAAs by the Office of the

Inspector General of the U.S. Department of Health

and Human Services found that all the AAAs

considered the development of a comprehensive and

coordinated system of community services for

elderly people-not the provision of services-to be

their highest priority (853).

For fiscal year 1989, Congress appropriated $858

million for Title III programs.2 About two-thirds of

this was for nutrition services (mainly congregate

meals), and the remaining one-third was for all other

services authorized under Title III (829). Title III

funds are allocated to State units on aging according

to a formula that is based in part on each State’s

portion of the national population over age 60 (818).

Although State units on aging derive a significant

portion of their budgets from Title III funds, they

also receive funds from other sources, including the

Federal Social Services Block Grant program, the

Medicaid 2176 Home and Community-Based Waiver

program, and State general revenues (374,575).

State units on aging allocate most of the Title III

funds they receive to AAAs (374,575). To allocate

the funds, State units are required by the Older

Americans Act to develop and apply a formula that

z~e amount of Federal funding for progr~s under Title III of the Older Americans Act has always been small in COmpfiSOn tO tie mount for

other Federal programs that serve elderly people (828). For fiscal year 1987, for example, the $700 million appropriated for Title III programs represented

less than 0.25 pement of the $270 billion annual Federal outlays for benefits for elderly people (68).
266 ● Confined Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

takes into account the geographic distribution in the

State of elderly people with the greatest economic

and social need (818). The amount of Title III funds

received by individual AAAs varies, depending

primarily on the overall Title III funds available to

a State and the formula used by the State for

allocating the funds (69,575). In addition to Title III

funds, many AAAs receive funds from other sources,

including Federal, State, and local government

agencies and programs, foundation grants, and

voluntary contributions from elderly service users

(65,170,605).

Who Is Served

People over age 60 are eligible for services paid

for with Title III Older Americans Act funds. Some

AAAs use non-Title III funds (e.g., funds from other

Federal, State, and local government programs,

private contributions, and other sources) to serve

younger people (170,605,756). If an AAA uses only

Title III funds to pay for a specific service, however,

people who are under age 60 generally are not

eligible for the service.

AAAs are prohibited from using means testing to

determine elderly people’s eligibility for services

paid for with Title III funds, and they may not charge

fees for these services, although they may request

voluntary contributions.3 Because Title III-tided

services are not means tested, AAAs are sometimes

able to provide or pay for services for elderly people

who do not meet the financial eligibility criteria for

other programs (575,828).

The Older Americans Act requires that AAAs

give priority to ensuring that the service needs of

elderly people with the greatest economic or social

need are met. Economic need is defined as having an

income level at or below the federally established

poverty levels. In 1985, 43 percent of all elderly

people who received Title III-tided services had

incomes below these levels (266). Social need is

defined in terms of noneconomic factors, including

physical and mental disabilities, language barriers,

and cultural, social, or geographic isolation. OTA is

not aware of any information about the percent of

elderly people who received Title III-funded services who have physical or mental disabilities or were

socially or geographically isolated. In 1987, minority elderly people constituted 16 percent of all

people who received Title III-funded services (454).

The extent to which AAAs serve people with

dementia is unclear. The results of several studies

indicate that some, and perhaps many, people with

dementia receive services of various kinds through

AAAs (193,605,756,934), but no data are available

on the total number of people with dementia who

receive services through AAAs. Moreover, as noted

later in this section, some people with dementia who

receive services through AAAs may not be identified as having dementia.

In 1986, the New York City Department for the

Aging surveyed all State units on aging and all

AAAs to determine what services they provided—

either directly or through arrangements with other

providers—for people with Alzheimer’s disease and

their families (605). Forty-six State units on aging

and more than 200 AAAs responded to the survey.

Some of the AAAs that responded said that they

were providing the same services for people with

Alzheimer’s disease as for other elderly people, but

many of the AAAs reported that they were providing

or paying for some special services for people with

Alzheimer’s disease and their families. The special

services mentioned most frequently were caregiver

support groups, educational programs and materials,

respite care, and adult day care. Many of the AAAs

reported that they had sponsored training programs

about Alzheimer’s disease and dementia for professionals and other service providers. Many of the

AAAs also said that they had formed cooperative

alliances with Alzheimer’s Association chapters and

other agencies in an effort to meet the needs of

Alzheimer’s patients and their families.

A 1987 mail survey of AAAs in Virginia had

similar findings (193). Information was obtained

about services that were provided or paid for by 25

Virginia AAAs for people with Alzheimer’s disease

and their caregivers. Caregiver support groups—

provided or sponsored by 22 of the AAAs-were by

far the most frequently mentioned service. Other

services that were mentioned by about one-third of

the AAAs were information and referral, congregate

meals, adult day care, respite care, and other in-home

services. A few of the AAAs said they had provided

or paid for an Alzheimer’s disease newsletter,

3As discussed laterinthis sectio~ some AAAs do use means testing to determine people’s eligibility for services paid for with non-Title ~ ~ds,

and some AAAs charge fees for such serviees (353,462).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 267

brochure, or videotape, and a few had included

information about Alzheimer’s disease in their AAA

newsletter. Most of the AAAs reported that they had

sponsored or co-sponsored workshops, educational

programs, or community meetings on Alzheimer’s

disease for caregivers, service providers, and/or the

general public, and most of the AAAs (20 of the 25

AAAs that responded to the survey) considered

these educational programs to be their most successful dementia-specific services.

In contrast to the findings of these surveys, OTA

has heard from many people, including Alzheimer’s

caregivers, Alzheimer’s advocates, health care and

social service professionals, and others, that AAAs

are not providing adequate services for people with

dementia. In part, these complaints may reflect some

people’s lack of awareness of the services provided

by AAAs, especially their lack of awareness that

some of the services provided by other agencies or

organizations are, in fact, funded in whole or in part

by an AAA. The complaints probably also reflect

some people’s expectation that AAAs should provide services for people with dementia-an expectation they may not have for some of the other

categories of agencies discussed in this chapter.

Nevertheless, the complaints are clear and pervasive. Given these complaints, OTA has been surprised by the number of AAAs that report that they

offer special services for people with dementia.

In addition to hearing complaints about the lack of

sufficient AAA services for people with dementia,

OTA has been told that some AAA staff members

are uninformed about Alzheimer’s disease, dementia, and potentially beneficial services for people

with dementia and/or unresponsive to the needs of

people with dementia and their caregivers (see, e.g.,

the case study of Mrs. D in ch. 1). No data are

available to determine whether these allegations

reflect isolated incidents or a more general problem.

The Administration on Aging has funded many

initiatives to provide training for the staff of aging

network agencies about Alzheimer’s disease and

dementia and to encourage aging network agencies

to provide or pay for services for people with

dementia. These initiatives include:

. the publication in 1983 and 1984 of four

handbooks on Alzheimer’s disease and how to

work with Alzheimer’s patients and their families (851);

●

●

●

●

training sessions on Alzheimer’s disease for

State unit on aging and AAA personnel, as

required by the 1984 amendments to the Older

Americans Act;

a multiyear initiative to encourage AAAs and

other aging network agencies to develop support groups for caregivers of people with

dementia;

many research and demonstration projects on

various kinds of services and methods of

working with people with dementia and their

caregivers (605); and

the designation in 1989 of a “National Resource Center on Alzheimer’s Disease” at the

University of Southern Florida.

The Older American’s Act contains several specific references to services for people with Alzheimer’s disease and their caregivers. The act

requires that an AAA’s annual plan ensure that an

adequate proportion of Title III funds allocated to the

AAA will be spent for in-home services, including

“supportive services for families of elderly victims

of Alzheimer’s disease and related disorders” (818).

The act also requires that an AAA’s annual plan

show how Title III-funded services will be coordinated with the activities of community organizations

established to help people with Alzheimer’s disease

and their families (818). In addition, in 1987,

Congress created a new section of Title III specifically to authorize in-home services for "frail older

individuals’ (818) “Frail” is defined in the new

section of the law as “having a physical or mental

disability, including Alzheimer’s disease or a related

disorder with neurological or organic brain dysfunction, that restricts an elderly person’s ability to

perform daily tasks or threatens his/her capacity to

live independently” (818). It is too soon to know

what effect this new program will have.

Linking Functions

Information and Referral

t % The Older Americans Act re14quires that each AAA’s area plan

“provide for the establishment and

maintenance of information and referral services in sufficient numbers

to assure that all older individuals

within the planning and service area covered by the

plan will have reasonably convenient access to such

services” (818). Some AAAs contract with other
268 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

agencies to provide information and referrals for

elderly people, and some AAAs provide information

and referrals themselves (756). A 1988 survey of

State units on aging conducted by the National

Association of State Units on Aging found that

AAAs in the 41 States that responded to the survey

were operating 320 information and referral programs and contracting for an additional 697 information and referral programs (577).4 In some planning

and service areas, the AAA was operating or

contracting for more than one information and

referral program. The most frequently reported

reasons for this practice were geography and language or nationality (577).

It is clear that many AAAs provide or contract for

information and referra1 programs for elderly people, but for the purpose of this OTA study, it is

important to emphasize that some AAAs do not

provide information and referrals themselves. A

member of the advisory panel for this OTA study

who contacted many AAAs in the course of setting

up IBM’s Eldercare Referral Service reported that

some of the AAAs she contacted said that they were

not appropriate agencies to provide the kind of

individualized referrals that are part of the IBM

Eldercare program (659).5 These AAAs pointed out

that they are primarily planning agencies and that

they do not provide information and referrals for

individuals.

No data are available on the number of people

with dementia and their caregivers who are currently

served by information and referral programs provided or funded by AAAs. In 1985, the Eastern

Massachusetts Alzheimer’s Association Chapter

conducted a mail survey of Massachusetts AAAs

and a few other agencies in the State (756). All of the

24 agencies that responded to the survey, including

22 AAAs, indicated that they provided information

and referrals for people with dementia, but about

one-quarter of the agencies were unable even to

estimate the number of people with dementia they

had served because they did not keep records of the

diagnoses or conditions of the people for whom they

provided information and referrals. An exploratory

study conducted for OTA in Cuyahoga County, OH,

which is described in detail in chapter 2, found that

many types of agencies that said they provided

information and referrals for people with dementia

in the county did not keep records on the people they

served by either diagnosis or condition (186). The

fact that an agency does not keep records on the

people it serves by their diagnosis or condition does

not prove that the agency staff member who provides

information and referrals is unaware of clients’

diagnoses or conditions. It suggests that this could

be the case, however. lf a person with dementia is not

identified as such by an information and referral

source, the person may not be referred to appropriate

services.

Another concern about the referrals provided by

some AAAs for people with dementia is the accuracy and comprehensiveness of the AAAs’ lists of

services. AAAs in many communities maintain lists

of services for elderly people, but anecdotal evidence indicates that these resource lists vary in the

extent to which they are accurate and comprehensive

with respect to services that may be needed for

people with dementia (246).

In order to improve information and referral for

people with dementia, some States have established

statewide dementia-specific information and referral

programs. Chapter 7 discusses 13 such programs, six

of which are administered by the State agency that

also functions as the State unit on aging. Some

AAAs have also established dementia-specific information and referral programs. The New York

City Alzheimer’s Resource Center, which was

established in 1984 by the New York City Department for the Aging-a department of municipal

government and the largest AAA in the country, is

probably the most ambitious of these programs (see

box 8-A). The resource center maintains up-to-date

information on all services available to Alzheimer’s

patients and their families in the area and functions

as an information clearinghouse, answering 125,000

inquiries a year (605). It also provides public

education and a variety of direct services for people

with dementia and their caregivers.

Because AAAs are part of a nationwide network,

they have the potential to connect long-distance

caregivers to sources of information about services

for elderly people who are living in other areas of the

Whe 1988 smey~sofound that 32 State,shad toll-free statewide information andreferralprograms; 18 of these statetideprograms were spec~lc~ly

for elderly people, and many of them were operated by the State agency that functions as the State unit on aging (577). State information and referral

programs for elderly people and for people with dementia are discussed inch. 7.

%BM’s Eldercare Referral Service is discussed in ch. 1.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 269

Box 8-A—The New York City Alzheimer’s Resource Center

The New York City Department for the Aging, a department of municipal government and the largest area

agency on aging in the country, offers assistance to Alzheimer’s disease patients, caregivers, and professionals

through the New York City Alzheimer’s Resource Center. Established in 1984 with funds from the Brookdale

Foundation and the City of New York, the Alzheimer’s Resource Center is the first municipally sponsored

comprehensive information, referral, and counseling service in the Nation.

Information and Referral--The Alzheimer’s Resource Center operates a comprehensive information and

referral program and works with a variety of other organizations to link Alzheimer’s patients, their families, and

others to appropriate programs and services in the city. The Alzheimer’s Resource Center maintains current

information on all services available to Alzheimer’s patients and their families in New York City and functions as

an information clearinghouse, responding to over 125,000 inquiries a year. The center has an interdisciplinary staff

of professionals who provide guidance to families and caregivers on public benefits and entitlement programs,

nursing home placement, home care services, respite, and adult day care. The center is open from 9:00 a.m. to 5:00

p.m. Monday through Friday.

Public Education-Public education efforts to help people understand the nature of Alzheimer’s disease and

learn about available resources have been a major activity of the Alzheimer’s Resource Center. The center reaches

the public in a variety of ways, including publications, mass transit advertising, radio and television public service

announcements, press releases from the mayor’s office, and direct mailings. The center has found that publications

are a valuable method of providing help to caregivers and others in understanding Alzheimer’s disease and the

resources available to them. Several editions of a 100-page” resource guide, Alzheimer’s Disease: Where To Go for

Help in New York City, have been prepared by the Alzheimer’s Resource Center in cooperation with the New York

City Chapter of the Alzheimer’s Association. Cooperative activities with other organizations are an important aspect

of the center’s public education and other activities. Each year, the Alzheimer’s Resource Center and the New York

City Chapter of the Alzheimer’s Association sponsor a citywide mayoral conference, with over 1,000 participants,

to educate people about Alzheimer’s disease, draw attention to Alzheimer’s programs in the New York City area,

and promote new Alzheimer’s programs. The center also works with private sector companies and unions to conduct

health fairs and lunchtime training and support groups for caregivers.

Provision of Services---In addition to providing educational programs and materials and information and

referrals, the Alzheimer’s Resource Center has undertaken several efforts to provide services not available

elsewhere.

● A family counselor provides free one-on-one professional counseling to family members who are in crisis.

● The center operates a free in-home respite program for families who are ineligible for Medicaid but unable

to afford the purchase of private home care. The program provides for a maximum of 16 hours of in-home

respite to allow family members to attend to medical appointments, run errands, or attend family support

group meetings. The center also provides time-limited round the clock emergency care in the home in

situations where the family caregiver must be away from home or is ill and unable to continue providing

care.

● The center offers legal and financial guidance to help caregivers deal with issues pertaining to incompetency

and surrogate decisionmaking , property, planning for long-term care costs, etc. Funding for legal and

financial assistance was initially provided through the center’s Alzheimer’s Legal Support Project, a

demonstration project funded by the Administration on Aging.

SOURCES: R. Goldstein, director, New York City Alzheimer’s Resource Center, New York, NY, personal communication, June 1988; New

York City Department for the Aging, ‘‘Caregiver Training and Support Resource Center, ’ proposal for the New York State Office

for the Aging, New York, NY, 1988; New York City Department for the Aging and the Brookdale Foundation, Agendas for Action:

The Aging Network Responds to Alzheimer’s Disease, compiled and written by F. Tanner (New York, NY: August 1986); and New

York City Department for the Aging Alzheimer’s Resource Center and the New York City Chapter of the Alzheimer’s Association

Alzheimer’s Disease: Where To Go for Help in New York City (New York, NY: November 1987).

country. Currently, the National Association of State was initiated in Illinois in 1989 (148). Of the 49 State

Units on Aging is trying to create a national access units on aging that responded to a survey conducted

system that would connect the information and by the National Association of State Units on Aging,

referral programs of aging network agencies across 16 State units said that AAAs would be the most

the country (577). This system, called “Elderlink,” appropriate referral point for the national access
270 • Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

system for information and referrals; 9 State units

said that a single statewide telephone number would

be the most appropriate referral point for the access

system; 7 said that a combination of AAAs and a

single statewide telephone number would be the

most appropriate referral point; 13 advocated options that involved other community agencies; and

4 did not specify an opinion (577).

This OTA report identifies visibility in the

community as an important criterion for designating

the agencies that should constitute a system to link

people with dementia to services. Visibility in the

community is particularly important for the information and referral component of a linking system

because families and others must initiate contacts

with information and referral sources themselves.

Because the specific names of AAAs vary and

because some AAAs are located within multipurpose agencies, some families and others may not be

aware of the AAA as a source of help in finding

services.

The 1987 study of 25 AAAs by the Office of the

Inspector General of the U.S. Department of Health

and Human Services concluded that within their

service areas, the 25 AAAs were generally better

known to service providers than to elderly people

(853). The vast majority (nearly 90 percent) of 179

local service providers contacted for the Inspector

General’s study knew the local AAA existed, but

only about half of the 122 elderly people interviewed

for the study knew of the local AAA.

One commentator has noted that although some

elderly people are aware of their local AAA, many

millions of older people and their families do not

know that AAAs exist or do not know the names of

the agencies, where they are located, or how to get

in touch with them (68). On the other hand, people

may be more aware of the AAA in their area than of

some of the other categories of agencies discussed in

this chapter.

Case Management

M

Some AAAs provide case management directly; some AAAs con-

‘] r ‘~ T tract with other agencies to povide

case management; and some AAAs

do neither. A 1987 survey of 144

AAAs conducted by the National

Association of AAAs found that 60 of these AAAs

(about 40 percent) provided case management directly (462). According to the association, as of

1989, some AAAs in more than half of all States

were providing case management-also called ‘care

management’ or ‘‘care coordination’ ’-and additional AAAs were planning to offer it (568). Box 8-B

describes the care management program of the

Region IV AAA in St. Joseph, Michigan. The care

management program, which began as a pilot project

in a three-county area of the State in 1983, has since

been expanded to other parts of the State.

Despite the significant number of AAAs that are

providing case management, there is considerable

controversy about whether AAAs should provide

case management. In connection with their planning

function, AAAs are mandated by the Older Americans Act to “conduct efforts to facilitate the

coordination of community-based, long-term care

services. . . designed to emphasize the development

of client-centered case management as a component

of such services” (818). Thus, AAAs are mandated

to encourage the development of case management

in the community, but there is no mandate in the act

for AAAs to provide case management.

The Administration on Aging and some AAAs

view case management as a ‘‘direct service” that

AAAs are, and should be, prohibited from providing

(627). Having AAAs provide case management, the

Administration on Aging argues, could detract from

AAAs’ ability to plan and coordinate comprehensive and coordinated systems of community services

for elderly people (853). In contrast, the National

Association of AAAs and some AAAs consider case

management an “administrative function” that

AAAs are not prohibited from providing (568). The

National Association of AAAs argues that case

management is a function that complements AAAs’

mandated functions of coordinating community

services for elderly people and ensuring access to the

services.

The director of the Region IV AAA in St. Joseph,

Michigan (see box 8-B) refers to the view that

providing case management detracts from an AAA’s

planning and coordinating functions as “a phantom

issue” and argues that:

Far from detracting, [providing case management] enhances the comprehensive planning process. The additional valuable data on the needs of frail

persons give an AAA additional guidance in changing priorities and developing services. Since the

inception of our case management activities, we
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 271

have developed financial management services for

those not needing full guardianship, funded respite

care, focused on the development of housing alternatives, and devised formal training programs for

agencies serving Alzheimer’s victims and their

families (170).

In the opinion of the National Association of AAAs,

AAAs are an appropriate setting for case management for several reasons: 1) AAAs are already

connected to a range of formal and informal service

providers and systems; 2) AAAs generally do not

provide services or, if they do provide services, they

do not charge for them, and therefore they have no

financial or other incentives to overuse services; and

3) AAAs are not in competition with other community service providers (568,627). With regard to the

competition among community service providers,

the director of the Region IV AAA in St. Joseph,

Michigan (see box 8-B) points out:

When our AAA launched its case management

project, we pulled together as many service providers as we could find to inform them of our intentions.

Almost every provider felt it could do a better job

than we. We were, however, practically every

agency’s second choice because of the vested

interest of their competitors (170).

Clearly, however, providing case management places

AAAs in competition with other agencies and

individuals that provide case management, including agencies that provide case management in

conjunction with other services such as home health

care.

Some AAAs that provide or contract for case

management do so with Title III Older Americans

Act funds, and some use public funds from other

sources, such as State general revenues, Medicaid,

and the Federal Social Services Block Grant (354,

587). In addition, some AAAs provide fee-forservice case management that is paid for by individual clients, and some AAAs have contracts with

private companies to provide case management for

their employees or, in the case of insurance companies, their policyholders. In 1987, for example, 11

AAAs in Washington State contracted with Blue

Cross of Washington and Alaska to provide case

management for holders of the company’s long-term

care insurance policies (416).

Very little information is available about the

capability of AAA case managers to work with

people with dementia. In the 1985 survey of the

AAAs and other agencies in Massachusetts mentioned previously, 14 of the 24 responding agencies,

all but two of which were AAAs, reported that they

provided case management for people with Alzheimer’s disease (756). Five of the 14 agencies

reported that all of their case managers had special

training about Alzheimer’s disease, and 10 of the 14

agencies reported that their case management supervisors had special Alzheimer’s training (typically

received at workshops sponsored by the Alzheimer’s

Association).

An exploratory study conducted for OTA in 1988

involved interviews with case managers in five

Pennsylvania AAAs to determine what they perceived to be the unique aspects of working with

people with dementia and their families (934). The

findings of the study, which are discussed at length

in chapter 3, provide some insight into the difficulties involved in providing case management for

individuals with dementia and the capability of case

managers in those AAAs to work with individuals

with dementia and their families.6 On the basis of the

interviews with these case managers, OTA’s contractors concluded that some of the case managers

dealt with clients with dementia and their families in

very skillful ways. None of the case managers had

received any special

ever (934).

Public Education

training for this ability, howI’@— — p—

As discussed earlier, the results

of the 1986 survey of AAAs and

State units on aging conducted by

the New York City Department for

the Aging (605) and the 1987 mail

survey of AAAs in Virginia (193)

indicate that many AAAs have sponsored a variety

of programs and developed or paid for the development of materials to educate the public about

Alzheimer’s disease, dementia, and services for

people with dementia. Often agencies of various

types conduct public education efforts on a one-shot

basis, and it is unclear from the results of the surveys

whether this is the case with the AAAs that

responded to the two surveys.

6A m report on this OTA contract is available from the National Technical Information Service in Springfield, VA (sm app. A).
272 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-B—The Care Management Program of the Region IV Area Agency on Aging

in St. Joseph, Michigan

Michigan’s Region IV area agency on aging (AAA) in St. Joseph, Michigan, operates a care (or case)

management program for people of all ages who live in the AAA’s three-county service area and are at risk of

nursing home placement. The AAA’s program began in 1983 as a case management program for people over age

60 who were at risk of nursing home placement and had exhausted all other community long-term care resources.

In 1987, the program was expanded with funds from the Michigan Department of Social Services to include nursing

home preadmission screening and case management for people of all ages who are eligible or potentially eligible

for Medicaid-funded nursing home care.

Funding for the AAA’s care management and screening program comes from both the Michigan Office of

Services to the Aging, which is the State unit on aging, and from the Michigan Department of Social Services, which

is the State Medicaid agency. Funds from the Office of Services to the Aging are used to provide case management

and a variety of services for medically qualified clients who are over age 60. Funds from the Department of Social

Services are used to provide case management and services for medically qualified clients of all ages who meet

specified financial eligibility criteria. By using funding from whichever source accommodates the eligibility

characteristics of a client, the program enables any person medically qualified for nursing home care to participate.

Potential clients are referred to the AAA’s care management and screening program by various sources. About

30 percent of referrals come from hospitals and physicians; 20 percent from home health agencies; 20 percent from

family and friends; and the rest from a variety of other sources. The AAA publicizes its program through the

Alzheimer’s Association and other community organizations, and about 20 percent of its clients are people with

dementia.

Each client referral received on the phone is screened by an intake specialist. If the intake specialist believes

that the person is at risk of nursing home placement, the intake specialist refers the person to the care management

team for a comprehensive assessment. From November 1987 to November 1988, intake specialists interviewed 509

individuals; 395 of them were referred for a comprehensive assessment, and the rest were referred to service

providers in the community.

The AAA’s program has five care management teams, each consisting of a social worker and a registered nurse.

These teams conduct comprehensive assessments of the health status, functional ability, and informal support

system of people referred to them. After conducting this assessment, the team discusses care options with the client

AAAs that sponsor public education programs or Services. The Alzheimer’s Resource and Referral

develop materials about dementia and services for

people with dementia often do so in collaboration

with an Alzheimer’s Association chapter or other

voluntary organizations that assist people with

dementia and their families. On their own or in

collaboration with these other organizations, some

AAAs have published and disseminated service

directories and brochures, books, videotapes, newsletters, and other educational materials about Alzheimer’s disease (605). Some AAAs have sponsored

public service announcements on the radio, television, or in newspapers to inform the public about

Alzheimer’s disease, and some have provided speakers for community programs about dementia. OTA

is not aware of any data on the percent of AAAs that

have conducted any of these activities.

The Geriatric Authority of Holyoke, Massachusetts operates an Alzheimer’s Resource and Referral

Center with Older Americans Act funds provided by

the local AAA, Holyoke/Chicopee Regional Senior

Center maintains a resource library with books,

videotapes, and training materials related to Alzheimer’s disease. In addition, the center offers

educational programs, publishes a monthly newsletter about Alzheimer’s disease and services for

people with dementia, and conducts nursing home

tours for caregivers who are looking for a nursing

home for a person with dementia. The center also

provides support groups for caregivers and a support

group for patients who are in the early stages of their

disease. The center’s director regularly telephones

some family caregivers who are unable to attend

support group meetings to provide emotional support and reduce the caregivers’ sense of isolation

(494).

In conjunction with their planning function, AAAs are mandated

by the Older Americans Act to:
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 273

and family members and develops a plan of care. If a client is capable of remaining in the community with in-home

supportive services, the care managers determine which services are needed and arrange for their provision either

by agencies that have cooperative, nonfinancial agreements with the AAA’s program or by providers who bid

competitively to serve the program’s clientele. Each care management team handles a caseload of about 40 clients.

Care managers may purchase services for clients only if no other payment options (e.g., Medicare or private

resources) exist. To resolve service payment issues, care managers rely on the program’s consultation staff,

consisting of an eligibility specialist and nurse consultant. For clients who cannot afford to pay privately for services

and initially are not eligible for Medicaid, the program provides financial management services. If it is determined

that Medicaid and other payment options are not available for a client, care managers may pay up to $975 per month

for services for the client. The program uses a system of “priority groups” based on need for services and ability

to pay for them to ensure that care managers purchase services for clients in the greatest need.

To make sure that clients and caregivers are satisfied with the services they are receiving and to monitor any

changes in their situation that may necessitate a change in the plan of care, a member of a care management team

makes regular followup visits at least every 3 months to the client home. If the situation warrants it (e.g., a client’s

condition is unstable), followup is more frequent. Care managers use verbal reports from clients and caregivers to

monitor the quality of services provided (529).

In fiscal year 1988, the Region IV AAA’s care management and screening program provided comprehensive

assessments to 319 clients, at an average cost per client of $100, and care management services to 386 clients, at

an average cost per client of $895. These services were funded with $199,200 from the Michigan Department of

Social Services and $186,000 from the Michigan Office of Services to the Aging.

In addition, the program directly purchased services costing $42,794 which includes $37,284 to provide 88

clients with long-term services such as personal care, home-delivered meals, homemaker, respite, financial

management, and counseling services, and $5,510 to provide 36 clients with one-time or short-term services such

as environmental aids (e.g., grab bars, safety rails), medications or personal hygiene items (e.g., adult diapers), and

immediate response services (e.g., ambulance trips).

SOURCES: LB. Kellogg, associate director, Region TV AAA, Inc., St. Joseph MI, personal communi cation, Nov. 2, 1989; and Michigan

Region IV Area Agency on Aging, Inc., “Michigan Department of Social Services: Preadmission Screening Program Annual

Report,” St. Joseph, MI, Feb. 15, 1989.

. . . assure the use of outreach efforts that will

identify individuals eligible for assistance under the

act, with special emphasis on rural elderly, older

individuals who have greatest economic need (with

particular attention to low-income minority individuals), older individuals who have greatest social

need (with particular attention to low-income minority individuals), and older individuals with severe

disabilities, and inform such individuals of the

availability of such assistance (818).

In addition, the Act authorizes the use of Title III

funds for ‘services designed to encourage and assist

older individuals to use the facilities and services

available to them” (818).

The extent to which AAAs ensure the provision of

outreach and the mechanisms by which they do so

vary. In some areas, senior centers that have been

designated by local AAAs as focal points for service

delivery attempt to seek out and serve isolated

elderly people (240). In addition, some AAAs

provide outreach through door-to-door canvassing

to identify homebound or isolated people in need of

services (575). OTA is unaware of any data on the

extent of these activities. One commentator has

concluded, however, that many AAAs serve a

disproportionate number of people who are already

connected to the formal service system (240).

Several individuals have told OTA that demented

elderly people without family caregivers are unlikely to come to the attention of most AAAs unless

they are referred by another community agency

(69,261).

An increasing number of AAAs are becoming

involved in various ways in ‘gatekeeper’ programs

that could help them identify isolated people with

dementia and isolated caregivers. As discussed in

chapter 3, gatekeeper programs recruit individuals

such as utility meter readers and mail carriers who

come into contact with many people in the course of

their regular daily activities and train them to

identify elderly people who may need assistance and

refer such people to a central agency. The first
274 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

gatekeeper program in this country was established

in 1978 by a community mental health center in

Spokane, Washington, with funding and technical

assistance from the Eastern Washington AAA.7 The

New York City Alzheimer’s Resource Center (see

box 8-A) receives referrals from a gatekeeper

program sponsored by a local utility company (261).

A 1988 survey of AAAs, State units on aging, and

State public utility commissions found that 146

AAAs in 46 States and the District of Columbia were

involved in gatekeeper programs, most of which had

been developed during 1987-88 (320). The “gatekeepers” for these programs are employees of 164

companies or organizations, including electric, gas,

telephone, and water companies, post offices, social

service organizations, pharmacies, groceries, banks,

libraries, and cable television companies.

According to the results of the 1988 survey,

AAAs play a variety of different roles in gatekeeper

programs, including helping to start up the programs, developing training programs for the gatekeepers, training the company trainers, training the

actual gatekeepers, training agency personnel to

receive referrals from the gatekeepers, keeping

records of referrals, and monitoring the program

(320). Referrals from the gatekeepers generally are

received either by the AAA or by an information and

referral agency. The AAAs that were involved in the

programs identified by the 1988 survey reported

receiving an average of 4 to 5 referrals a month.

Many of the programs were so new at the time of the

survey, however, that they could not provide any

information about average number of referrals.

It is unclear to what extent these gatekeeper

programs will help AAAs identify isolated people

with dementia and isolated caregivers. Many of the

programs are run by utility companies, and the

primary focus in some of those programs is bill

payment problems (320). Nevertheless, the programs provide a mechanism by which some people

who need assistance, but would not contact an AAA

or any other agency on their own, can be referred for

help.

Role in Allocating Services and Funding

AAAs allocate services that are paid for with Title

III Older Americans Act funds. Eligibility for these

services is generally limited to people over age 60.

As noted earlier, AAAs are prohibited from using

means testing to determine elderly people’s eligibility for services funded with Title III money, and they

may not charge fees for these services (although they

may request voluntary contributions).

Many AAAs also allocate services paid for by

other public and private funds. The Region IV AAA

in St. Joseph, Michigan (see box 8-B) allocates

services paid for by Medicaid and by Michigan’s

Alternate Care Program, a program funded entirely

with State money. Likewise, the New York City

Alzheimer’s Resource Center (see box 8-A) allocates services paid for with city funds and private

foundation grants, in addition to other sources.

When an AAA allocates services paid for with

public or private funds other than Federal Older

Americans Act funds, it does so on the basis of the

eligibility criteria set by those other funding sources

--criteria that may be very different from the

eligibility criteria for services paid for with Older

Americans Act funds.

Probably the best examples of AAAs allocating

services on the basis of eligibility criteria that are

different from the eligibility criteria for services paid

for with Older Americans Act funds are the AAAs

that have been designated by States to administer

State nursing home preadmission screening programs and Medicaid 2176 Home and CommunityBased Waiver programs. In administering these

programs, some of which are discussed in chapter 7,

AAAs use means testing and strict functional and

medical criteria to determine people’s eligibility for

services. It is important to keep in mind that AAAs

that administer these programs are operating not

only as agencies mandated by Title III of the Older

Americans Act, but also as public or private agencies

that have many functions other than those mandated

by the act.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, AAAs offer many advantages:

. AAAs exist in every State.

. AAAs already have connections to many different agencies and individuals that provide services that may be needed for people with

dementia.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 275

Some AAAs provide information and referrals

and case management for elderly people, including some people with dementia.

Some AAAs have sponsored public education

programs and developed or paid for the development of public education materials about

Alzheimer’s disease, dementia, and services for

people with dementia.

Some AAAs are involved in outreach programs

that may help them to identify isolated people

with dementia and isolated caregivers who

would not contact the AAA or any other agency

on their own.

AAAs probably have more visibility in their

communities than some of the other categories

of agencies discussed in this chapter.

AAAs are part of a nationwide network of

agencies an-d therefore have the potential to

serve long-distance caregivers who need help

in locating and arranging services for an elderly

person with dementia.

Despite these considerable advantages, there would

be several drawbacks to designating AAAs as the

basis for a national system to link people with

dementia to services. The most important drawback

relates to questions that have been raised about the

capacity of AAAs to work effectively with people

with dementia and their caregivers. As discussed in

this section, OTA has heard complaints that some

AAAs’ resource lists are not accurate or comprehensive with respect to the services that may be

needed for people with dementia, that some AAAs’

staff are not informed about dementia or services for

people with dementia, and that some AAAs’ staff are

not responsive to the needs of people with dementia.

OTA does not know how widespread any of these

problems are. AAAs have many mandated functions

and serve many different client groups, so it is to be

expected that some AAA staff members are not

knowledgeable about dementia or services for people with dementia. Moreover, this section has cited

numerous ways in which some AAAs are serving

people with dementia effectively. Nevertheless, the

perception of family caregivers, Alzheimer’s advocates, and others that AAAs are uninformed about

dementia and/or unresponsive to people with dementia and their caregivers is a major drawback to

designating AAAs to constitute a linking system for

people with dementia.

A second drawback to designating AAAs as the

basis for a national system to link people with

dementia to services is the diversity of AAAs. What

may appear from the Federal level and in the context

of the Older Americans Act as 670 agencies with

similar functions are, in fact, 670 agencies that differ

from each other in virtually all respects except that

they receive Title III Older Americans Act funds.

Some AAAs are essentially planning agencies that

provide few, if any, programs for individuals.

Without significant changes, those AAAs could not

function effectively as linking agencies for people

with dementia. Moreover, many of the most impressive programs provided by AAAs for people with

dementia are programs that are paid for primarily by

public funds other than Older Americans Act funds

or by private funds. That one AAA or AAAs in one

State provide such programs does not indicate that

other AAAs in other States could also do so, because

the other AAAs may not have access to funding for

the programs.

A third drawback to designating AAAs as the

basis for a national linking system for people with

dementia is that services and programs paid for with

Older Americans Act funds are generally limited to

people over age 60, whereas some people with

dementia are under age 60. This problem would

appear to be easily resolved by legislation that

lowered the age limit generally or for certain

programs.

A final drawback is the lack of outreach in some

AAAs. People with dementia who live alone and

have no informal caregiver are unlikely to contact an

AAA or any other agency on their own. If AAAs

were designated to establish a national system to link

people with dementia to services, effective outreach

methods would have to be implemented by all

AAAs.

Lastly, it should be noted that although the

analysis in this section has focused primarily on

AAAs, the discussion in chapter 7 about State

programs and systems that link people to services

shows that State units on aging are generally

involved in and often initiate aging network programs that link elderly people to services. If AAAs

were designated to establish a national system to link

people with dementia to services, State units on

aging should be included in that designation.
276 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

COMMUNITY MENTAL HEALTH

CENTERS

Community mental health centers (CMHCs) are

local agencies that provide mental health services

for people of all ages who have mental and

emotional problems. CMHC services include diagnosis and assessment of mental health problems;

psychotherapy; individual, group, marital, and family counseling; pharmacological treatment for mental health problems; and other mental health services. All CMHCs provide mental health services on

an outpatient basis, and some CMHCs also offer

inpatient mental health services.

There is no generally accepted figure for the

number of CMHCs in the United States, in part,

because of a lack of agreement about which agencies

should be counted as CMHCs. The 1987 National

Registry of Community Mental Health Services,

published by the National Council of Community

Mental Health Centers, listed 1,800 agencies that

provided community mental health services, and an

additional 2,800 ‘‘satellite” service locations associated with the 1,800 agencies (583). The 1,800

agencies and their satellite locations existed in all 50

States, the District of Columbia, Puerto Rico, Guam,

and the Virgin Islands. By 1990, the Council’s list of

agencies that provide community mental health

services had grown to 2,300 agencies, not including

satellite locations (207). The council believes that its

1990 list probably includes almost all agencies that

could be considered CMHCs (207).

OTA has included CMHCs in its analysis of

agencies that might constitute a national system to

link people with dementia to services for several

reasons. One reason is that many CMHCs provide

public education, information and referral, case

management, and outreach for mentally ill people,

and at least a few CMHCs provide these linking

functions for people with dementia. In addition,

CMHCs’ expertise in assessing and treating mental,

emotional, and behavioral problems is relevant to

identifying the service needs of people with dementia and their caregivers and linking them to appropriate services. Although the diseases that cause

dementia are physical conditions, their manifestations often include mental, emotional, and behavioral problems, and these problems are frequently

the most difficult aspect of a patient’s illness for

families and others to manage (681,705). If the

problems are assessed and treated effectively, a

patient’s overall functioning may be improved. Even

if no fundamental changes can be made in a patient’s

functioning, the family or other caregivers can be

taught ways of managing the patient’s problems so

that the burden of caregiving is reduced. In either

case, the patient’s service needs are likely to be

changed and decreased. The expertise of CMHCs’

staff in assessing and treating emotional problems

may also benefit people with dementia and caregivers who have feelings and perceptions that make

them reluctant to use needed services.8

Overview of the Agencies

Outpatient mental health services have been

available on a limited basis from various kinds of

community agencies and from individual psychiatrists, psychologists, and other mental health professionals for along time. Federal support for ‘community mental health centers” was initiated in 1963

with passage of the Community Mental Health

Services Act (Title II of Public Law 88-164) that

authorized Federal grants to local groups to establish

CMHCs (766,808). The 1963 act funded CMHC

construction and required CMHCs to provide five

types of mental health services: 1) inpatient services,

2) outpatient services, 3) partial (day or night)

hospitalization, 4) emergency services, and 5) consultation and education (766). In subsequent years,

Congress added funds for planning and staffing and

expanded the types of mental health services CMHCs

were required to provide.

In 1981, Federal funding for the CMHC program

and nine other programs was consolidated into a

block grant-the Alcohol, Drug Abuse, and Mental

Health Services (ADMs) block grant (766,808).

States were given the authority, within certain

legislated limits, to set priorities for the use of the

block grant funds and to allocate the funds. In order

to receive Federal ADMs block grant funds, CMHCs

were required to provide five types of mental health

services: 1) outpatient services, 2) 24-hour emergency care, 3) day treatment or partial hospitalization, 4) screening of potential State institution

residents, and 5) consultation and education. Inpatient services were not included.

s~e kinds of feel~s and per~ptiom of people with dementia and their caregivers that make them reluctant to use needed services are discussed

inch. 3.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 277

At the Federal level, the ADMS block grant is

administered by the Alcohol, Drug Abuse, and

Mental Health Administration in the U.S. Department of Health and Human Services. This agency

has certain oversight responsibilities and assesses

each State’s compliance with legislative mandates

through the block grant application process, annual

reports, audits, and compliance reviews. At the State

level, the ADMS block grant is administered by a

designated State agency—usually the State department of health, human services, or mental health.

By 1981, when the ADMS block grant was

established, more than 700 CMHCs had received

Federal funds under the Community Mental Health

Services Act of 1963 (625,766,806,808), and about

500 of these CMHCs were still receiving Federal

funds under the act (806). For some years after the

establishment of the ADMS block grant, States were

required to allocate some of their block grant funds

to those CMHCs that received Federal funds under

the 1963 act in 1981, and would have been eligible

to receive funds under the act in subsequent years.

This requirement is no longer in effect, but some,

and perhaps many, CMHCs that were funded under

the 1963 act do receive ADMS block grant funds

(207). The number of such agencies is not known

because the data system that was in place under the

1963 act to collect information about CMHCs was

discontinued when the block grant was established,

and no alternate system was created to collect the

information.

In addition to CMHCs that were funded under the

Community Mental Health Services Act of 1963,

there are many other agencies that provide community mental health services, but never received

Federal funding under the 1963 act. As noted earlier,

the National Council of Community Mental Health

Centers has a list of 2,300 agencies that provide

community mental health services. That number

includes agencies that were funded under the 1963

act and agencies that were not. Some agencies that

provide community mental health services but were

not funded under the 1963 act currently receive

ADMS block grant funds, but the number of such

agencies is not known (207).

Although CMHCs are sometimes discussed as if

they were a clearly defined group of agencies, there

is no agreement about precisely which agencies

should be considered CMHCs. The term ‘ ‘community mental health center” is a generic one that was

used in the 1963 act, but many agencies that provide

community mental health services are not called

‘‘community mental health centers’ and have a

variety of other names. The agencies that received

funding under the Community Mental Health Services Act of 1963 can be identified and are identified,

for example, in the 1987 National Registry of

Community Mental Health Centers (583). The

characteristic that made those agencies a clearly

defined group--receipt of Federal funds under the

1963 act-ceased to exist almost a decade ago.

Agencies that provide community mental health

services but did not receive funding under the 1963

act, have never been a clearly defined group.

In the national inventory of mental health organizations conducted in 1986 by the Alcohol, Drug

Abuse, and Mental Health Administration, agencies

that provide community mental health services were

subsumed under four categories:

1. freestanding psychiatric outpatient clinics (of

which there were 780),

2. freestanding psychiatric day/night (partial hos3

4

vitalization) organizations (of which there were

97),

multiservice mental health organizations (of

which there were 1,363), and

general hospitals with separate psychiatric

outpatient services (of which there were 1,354)

(489).

These four categories included both agencies that

did and did not receive funding under the 1963 act.

OTA is not aware of any research on agencies that

provide community mental health services that

compares agencies that received funding under the

1963 act and agencies that did not. One commentator

believes that there are probably very few differences

between the two groups of agencies, but that

agencies that received funding under the 1963 act

may tend to be larger, to provide more comprehensive mental health services, and to be more

focused on caring for the indigent than agencies that

did not receive funding under the act (207). If

Congress chose to designate CMHCs to constitute a

national system to link people with dementia to

services and if, as has been suggested, the two

groups of agencies are quite similar, Congress would

probably want to include both groups of agencies in

the system. It should be recognized, however, that

determining g exactly which agencies are CMHCs for

this purpose may be difficult.
278 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

More importantly, the mechanism by which the

Federal Government could designate CMHCs to

constitute a national linking system for people with

dementia is unclear. States determine which agencies receive ADMS block grant funds; thus block

grant funding does not create a direct link between

the Federal Government and CMHCs. Moreover,

some agencies that provide community mental

health services and could be part of a national

linking system may not receive ADMS block grant

funds, and there is no obvious connection between

the Federal Government and those agencies. Lastly,

States operate many mental health facilities, including outpatient mental health clinics, some of which

are on the grounds of State mental hospitals (207,719).

These clinics are considered CMHCs by some States

and are included in some lists of CMHCs. As State

agencies, their functions are determined by State

government; whether they could be part of a national

linking system for people with dementia would be

the decision of each State.

In fiscal year 1989, $246 million of the Federal

appropriation for the ADMS block grant was targeted for mental health (520), and much of this

amount funded CMHCs. ADMS block grant funds

make up only 6 percent or less of the budget of the

average CMHC, however (207,441,489,584,719). A

1987 survey of agencies that are members of the

National Council of Community Mental Health

Centers found that in addition to the 6 percent from

the ADMS block grant, the average CMHC received

43 percent of its budget from State government, 13

percent from local government, 11 percent from

Medicaid, 9 percent from client fees, 8 percent from

private insurers, and 11 percent from other sources,

such as the Social Services Block Grant, charitable

contributions, and Medicare (584).9

Who Is Served

CMHCs provide mental health services for people

of all ages. CMHCs that receive ADMS block grant

funds are specifically required to serve seriously

mentally ill adults, emotionally disturbed children,

mentally ill elderly people, and other undeserved

populations in their service areas, regardless of the

individuals’ ability to pay for the services, current or

past health condition, age, handicap, race, or sex.

In the years since the establishment of the ADMS

block grant, the influence of the Federal Government has given way to the expanded role of State

governments in planning and directing community

mental health services, and CMHCs have modified

their programs and services to reflect State Priorities.

Most States give highest priority to serving seriously

mentally ill people, and CMHCs have increasingly

targeted their programs to serve this client population (370,441,585,719). The term “seriously mentally ill” (previously “chronically mentally ill”)

usually refers to adults with a diagnosis of schizophrenia, a major affective disorder, psychosis, or a

personality disorder, and a recent history of psychiatric care that required more than voluntary outpatient treatment (585). The term ‘seriously mentally

ill” is not usually used to refer to people with

Alzheimer’s disease or other diseases that cause

dementia.

The extent to which CMHCs serve people with

dementia is not known. Data from the national

inventory of mental health organizations conducted

in 1986 by the Alcohol, Drug Abuse, and Mental

Health Administration showed that among the

clients of the four types of agencies included in the

survey (freestanding psychiatric outpatient clinics,

freestanding psychiatric day/night organizations,

multiservice mental health organizations, and general hospitals with separate psychiatric outpatient

services), only 4 percent had a diagnosis of organic

brain syndrome (489), a diagnosis that often includes Alzheimer’s disease and other diseases that

cause dementia. Since CMHCs were subsumed

under these four categories of agencies, the data

suggest that CMHCs were serving very few people

with dementia.

A 1984 survey of agencies that were members of

the National Council of Community Mental Health

Centers found that one-third of the 281 responding

agencies reported that they had special services for

people with Alzheimer’s disease and their families.

How representative these findings were for all

CMHCs is not known. In the 6 years since the data

were collected, awareness of Alzheimer’s disease

and the special service needs of people with Alzheimer’s and other dementing diseases has increased

greatly in this country, and more CMHCs may have

special services for people with dementia now than

9ADMS block grant funds area very small part of all funds allocated by States for mental health servicefiless than 3 percent in fuc~ Yew 1986

(573). Most funds allocated by States for mental health services are used to pay for inpatient se!vices.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .279

in 1984. On the other hand, the fact that a CMHC has

special services for people with Alzheimer’s disease

says almost nothing about how many people with

Alzheimer’s or other dementing diseases the agency

serves.

The 1984 survey found that agencies that reported

that they had special services for elderly people were

much more likely than other agencies to also report

having special services for people with Alzheimer’s

disease (458). Although OTA is not aware of any

research to this effect, it is logical that there could

also bean association between the number of elderly

people served by agencies that provide community

mental health services and the number of people

with dementia served by these agencies, especially

since the great majority of people with dementia are

elderly. If the latter association exists, then people

with dementia are probably underserved by CMHCs

since CMHCs have historically underserved elderly

people (6,7,419,458,766,806).

Beginning in 1975, Congress has repeatedly

mandated more services for elderly people through

CMHCs, and some progress has been made in

increasing the number of elderly people served by

these agencies (6,7). Since the establishment of the

ADMS block grant, however, CMHCs’ emphasis on

serving seriously mentally ill people has resulted in

fewer services for other client groups, including

elderly people (6,7,441,458,585,806,808). OTA is

not aware of any current national data on the number

of elderly people served by CMHCs, but a 1987

survey of 335 CMHCs by the National Council of

Community Mental Health Centers found that elderly people constituted only 8 percent of the

agencies’ clientele (584), even though elderly people make up 12 percent of the U.S. population.

Many reasons have been cited to explain the

underrepresentation of elderly people in the clientele

of agencies that provide community mental health

services. These reasons include:

negative attitudes of mental health professionals about elderly people and their potential to

benefit from mental health treatment,

limitations on reimbursement for mental health

services through Medicare,

lack of transportation,

lack of awareness of mental health services

among elderly people, and

● resistance to the use of mental health services

among elderly people (238,419,445,451,692,

766,%08,889).

Most important for this assessment is the fact that

some, and perhaps many, elderly people and some

younger people perceive a stigma associated with

the use of mental health services (272,419,445,889).

Notwithstanding these problems, a few CMHCs

have been very successful in developing comprehensive elderly service programs that target and serve

elderly people with dementia (97,419,688). One

such program, developed in the State of Washington

by the Spokane CMHC with support from the

Eastern Washington AAA, is described in box 8-C.

This program provides public education about

mental health problems in elderly people, including

mental and emotional problems associated with

dementia; information and referrals for elderly

people with mild cognitive impairments; case management for elderly people with more serious mental

problems; and outreach to identify elderly people

who need services, but are not willing or able to

contact service providers on their own (688,689).

Another program operated by a CMHC in Ventura

County, California, also serves elderly people with

dementia and provides all four functions that OTA

concludes are essential to link people with dementia

to appropriate services: public education, information and referral, case management, and outreach.

That program is described in detail in a recently

published book, Outreach With the Elderly: Community Education, Assessment, and Therapy (418).

Linking Functions

Information and Referral

7

CMHCs provide information and

referrals for their own clients. CMHCs

are also capable of providing information and referrals for the general Ial

~

public, but the extent to which they

 do so is not known. Likewise,

CMHCs are capable of providing information and

referrals for long-distance caregivers who need help

locating services for a relative who lives in the

CMHCs’ service area, but the number of longdistance caregivers who are served by CMHCs is not

known.
280 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-C—The Spokane Community Mental Health Center’s Elderly Services Program,

Spokane, Washington

In 1978, the Spokane Community Mental Health Center (CMHC) established an Elderly Services Program to

provide mental health and other services for elderly people, especially frail, vulnerable, and moderately to severely

impaired elderly people. The program receives 60 percent of its funding from the Eastern Washington AAA (Older

Americans Act and Washington State aging funds). Other program funds come from the State mental health

grant-in-aid program, the ADMS block grant, and the National Institute on Drug Abuse.

The Spokane CMHC’s Elderly Services Program has two components:

* a telephone information and referral component for elderly people who have mild psychiatric and/or

cognitive impairments and who have a caregiver or other support system that is willing and able to act on

their behalf; and

. a multidisciplinary assessment, treatment, and case management component that offers elderly people

believed to be at high risk of institutionalization a comprehensive in-home assessment, a variety of

preventive, rehabilitative and supportive services, and case management.

The information and referral component is staffed by three telephone screeners. The case management

component is staffed by a program manager and 5 multidisciplinary teams which include 5 team leaders (4 are

nurses), 15 case managers, 1 psychiatrist (36 hours/week), and resident physicians.

Elderly people are sometimes referred to the case management program by their families, Other referrals come

from volunteer ‘gatekeepers.’ Volunteer gatekeepers are individuals who interact with many people in the course

of their regular activities-e. g., mail carriers, meter readers, and other utility workers; property appraisers;

apartment and mobile home court managers; fuel oil dealers; employees of police, ambulance, and fire departments;

grocery clerks; and pharmacists--and are specially trained to identify individuals who are confused, ill, or otherwise

at risk. Training for gatekeepers is provided by the CMHC in cooperation with the corporations and businesses that

employ the volunteers.

In 1987, gatekeeper referrals accounted for 37 percent of all clients admitted to the Elderly Services Program’s

case management program. Gatekeepers’ outreach efforts were especially useful in identifying demented elderly

people living alone. In 1987, 46 percent of the demented elderly people living alone who were referred to the

program were referred by the gatekeepers.

The comprehensive in-home assessment that is given to each elderly person referred to the case management

program is coordinated by a case manager who is accompanied on home visits by members of the multidisciplinary

team. Following the assessment, the team develops a detailed plan of care. This plan seeks to make use of the

potential of family and other support systems, and family conferences are held when needed Caregiver support

groups tire also available.

The Spokane Elderly Services Program can deliver a variety of preventive, supportive, and rehabilitative

in-home services via 14 agencies with which it has written agreements. Most of these agencies are AAA-funded.

The most frequently used services are homemaker/chore services, visiting nurses and nurse aides, adult day health

care, home-delivered meals, and respite. The Elderly Services Program is dependent on these other agencies to

implement much of the treatment plan, and all agencies are involved in weekly case staffing meetings. The Elderly

Services Program also provides at least 20 hours of training for the service providers (e.g., chore workers) on topics

such as dementia and depression.

The Spokane CMHC’s Elderly Services Program has been very successful in reaching elderly people. Whereas

clients over age 60 represent between 4 to 8 percent of the CMHC population nationally, the Elderly Services

Program’s clients account for 22 percent of the Spokane CMHC’s client population. Minority elders, who constitute

only 2 percent of Spokane’s elderly population, make up 6 percent of the case management program.

SOURCE: R. Raschko, ‘‘Spokane Community Mental Health Center Elderly Services, ’ unpublished mimeo, Spokane Community Mental

Health Center, Spokane, WA, May 25, 1988.

Some CMCHs provide referrals to all kinds of Anecdotal evidence suggests that other CMHCs

health care, long-term care, social, and other serv- only provide referrals to mental health services

ices, as well as to mental health services (97,419,688). (746).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .281

Very little information is available about whether

CMHCs generally have lists of community services

to which they refer people, and if so, how they obtain

the lists. One OTA panelist believes that some

CMHCs generate their own resource lists and that

other CMHCs use resource lists from a local United

Way information and referral program, an AAA, or

another source (689).

Case Management

The Community Mental Health

Center Amendments of 1975 required CMHCs to provide case

management for their elderly clients (766), but until the establishment of the ADMS block grant in

1981, CMHCs provided relatively little case management. Since then, most CMHCs have increased

the case management they provide (370,441). One

study of 54 CMHCs in 15 States found that in the 3

years after the establishment of the ADMS block

grant:

Most centers reported substantial improvements

in their case management programs. Examples

include conducting better assessments, more interagency collaboration, greater cooperation among

staff from different services, more coordination,

closer monitoring, specific staff assignments, more

home visits and work with families, and better

liaison with hospitals. Along with expanded services, most centers reported increased staff time

devoted to case management, and in some States,

increased funding as well (441).

CMHCs provide case management primarily for

people with serious mental illness (207,370,441,

466,585). According to one source, the majority of

CMHC clients who receive case management are

either young adults or previously deinstitutionalized

adults—many of who are now in their forties (207).

A 1987 membership survey by the National Council

of Community Mental Health Centers found that 86

percent of 595 responding CMHCs provided case

management for their clients with serious mental

illness (585).

The percentage of CMHCs that provide case

management for people with dementia is not known

but is probably small, given the targeting of most

CMHCs’ case management to people with serious

mental illness. An official from one State has told

OTA he believes that the case management technology used by CMHCs in his State for seriously

mentally ill people could be adapted to serve people

with dementia, but that the CMHCs’ case management programs would have to be greatly expanded

to serve the additional clients (466). OTA is aware

of several CMHCs, however, that provide case

management for many people with dementia (97,

419,688). One example is the CMHC in Spokane,

Washington, that is described in box 8-C.

CMHCs vary with respect to the personnel they

use to provide case management. Some, and perhaps

many, CMHCs use a multidisciplinary team to

provide the initial client assessment and care plan,

and some CMHCs include a psychiatrist and/or a

psychologist on the team.l0 Social workers, nurses,

and psychologists provide ongoing case management in some CMHCs, but most CMHCs probably

use personnel without these credentials. According

to one source, many CMHCs assign the lowest

ranking personnel with limited training and experience to provide case management for people with

serious mental illness (523). To address this problem, one State, Rhode Island, has developed a

voluntary formal training and certification program

for CMHC case managers (905).

Whether CMHCs can provide effective case

management for people with dementia depends in

part on whether they have a working relationship

with other community agencies that furnish the

kinds of services that maybe needed by people with

dementia. Beginning in 1975, CMHCs were required by the 1975 amendments to the Community

Mental Health Services Act of 1963 to coordinate

their services with the services of other health care

and social services agencies (766). In 1981, the law

establishing the ADMS block grant reemphasized

the need for CMHCs to coordinate services with

other agencies.

Although some CMHCs have developed strong

working relationships with other community agencies, many CMHCs have not (6,7,203,418,451). A

1983 survey of 233 CMHCs found almost no

coordination and little routine interaction between

CMHCs and AAAs (6). A followup survey 2 years

later indicated that interactions between these types

of agencies had increased, and 18 percent of the

CMHCs reported having a formal agreement with

10CMHCS ~so me pSycfitistS to me initial d@noses, and some use psychologists to provide testing and other information needed for dti~osis.
282 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

the local AAA (7). Another survey in 1984 found

that 23 percent of 281 responding CMHCs had a

formal agreement with an AAA, and 66 percent had

an informal affiliation (451). Interestingly, this

survey found that CMHCs that were affiliated with

AAAs-whether through formal or informal agreements—were twice as likely as other CMHCs to

provide special services for people with Alzheimer’s

disease, respite care, and family support services.

Public Education

B

The Community Mental Health

Services Act of 1963 and the law

-—— -— that established the ADMS block

.

@

grant required CMHCs to provide

. ‘‘consultation and education’ serv- —e

ices. In response to a 1987 survey of

335 agencies that are members of the National

Council of Community Mental Health Centers, 89

percent of the agencies reported that they were

providing such services (584). Although no data are

available, it is likely that many CMHCs provide

public education programs and materials as part of

their consultation and education services. The programs and materials may not pertain to dementia,

however.

Some CMHCs that have special programs for

elderly people provide public education programs

and materials about dementia and about services for

people with dementia (418,689). These programs

and materials include community meetings, workshops, public service advertisements, brochures, and

other printed materials. Some experts believe that

vigorous public education efforts are essential in

overcoming the stigma associated by some people

with mental health services and that such efforts can

be successful in getting elderly people, including

people with dementia, and their caregivers to use the

services provided by a CMHC (95,418).

Outreach

People with serious mental illnesses often are unable or unwilling

to contact service providers on their

own. For this reason, many CMHCs

have developed outreach programs

(585), but most of these programs

probably do not target people with dementia.

The director of elderly services at the CMHC in

Spokane, Washington, maintains that outreach is

essential to serving demented elderly people who

Photo credit: Bill Adams, Northwest Images

The Eastern Washington Area Agency on Aging recently

sponsored a public education campaign to inform people

about the telephone information and referral program of

the Community Mental Health Center in Spokane, Washington. Billboards like the one pictured here were displayed

in early 1990 and are scheduled for use

again in the fall of 1990.

live alone (688). Some CMHCs that have special

programs for elderly people have outreach programs

that target these people. The Spokane CMHC’s

‘‘gatekeeper” program (see box 8-C) is particularly

effective in reaching demented elderly people who

live alone; in 1987, 46 percent of the demented

people living alone who were referred to the

Spokane CMHC program were referred by the

volunteer ‘‘gatekeepers. ”

Another CMHC serving two rural counties in

Iowa also has a gatekeeper program that has been

effective in identifying elderly people with dementia

who need services but are unwilling or unable to

contact service providers on their own (97,763). The

gatekeeper program uses mail carriers, utility workers, and others to refer elderly individuals who

needed assistance to an outreach team from the

CMHC; the team then contacts the individuals,

evaluates their service needs, refers them for medical

and social services, and provides ongoing mental

health services in the home, if needed.

Role in Allocating Services and Funding

CMHCs generally do not allocate services or

funding for services other than those they provide.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, CMHCs offer several advantages:

. There are more than 2,000 CMHCs nationwide.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .283

CMHCs typically employ a wide range of

professionals, including psychiatrists, psychologists, nurses, social workers, and others who

have expertise in the assessment and treatment

of mental and emotional problems.

CMHCs serve individuals of all ages.

Many CMHCs have experience in providing

case management.

A few CMHCs provide public education, information and referral, case management, and

outreach for people with dementia, thus suggesting that other CMHCs could also do so.

Despite these advantages, there are several important drawbacks to designating CMHCs as the basis

of a system for linking people with dementia to

services. The primary drawback is that many CMHCs

serve relatively few people with dementia. CMHCs

have historically underserved elderly people, and the

great majority of people with dementia are elderly.

Moreover, since the inception of the ADMS block

grant, most CMHCs have focused increasingly on

serving seriously mentally ill adults, a category that

usually does not include people with dementia.

Although these CMHCs provide information and

referral, case management, and outreach for their

clients who are seriously mentally ill, it would

require a considerable change in direction and either

a reallocation of agency resources or a significant

increase in resources for these CMHCs to provide

similar assistance for people with dementia. Obviously, a large-scale reallocation of CMHCs’ resources from people who are seriously mentally ill

to people with dementia would create a major gap in

services for people who are seriously mentally ill.

A second drawback to designating CMHCs as the

basis of a system for linking people with dementia

to services is that some CMHCs do not have

effective working relationships with other community agencies that provide the kinds of services that

may be needed for people with dementia.

A third drawback is that CMHCs are not a clearly

defined group of agencies that could be designated

by the Federal Government to constitute the linking

system nationwide. The generic term “community

mental health center’ is used to refer to agencies that

received funding under the Community Mental

Health Services Act of 1963—a group of agencies

that can be identified precisely—and to other

agencies that provide community mental health

services but did not receive funding under the 1963

act—a group of agencies that cannot be identified

precisely. Since there is no current source of direct

Federal funding that is unique to either or both of

these groups of agencies, it is unclear what mechanism the Federal Government could use to designate

the agencies as the basis of a national linking system.

A final drawback is that some people with

dementia and their families and other informal

caregivers may not be willing to contact a CMHC for

help in locating and arranging services because they

perceive a stigma associated with mental health

services. As indicated earlier, however, some experts believe that public education efforts by CMHCs

can be successful in overcoming this stigma.

COMMUNITY HEALTH CENTERS

Community health centers (CHCs) are organizations that provide primary health care and other

health-related services to individuals in a local

community. Their clients include people who tend

not to be adequately served by other health care

providers: poor and low-income people, members of

ethnic minority groups, and people who live in

medically underserved areas. As of 1989, there were

about 1,200 CHCs delivering care at more than

2,000 sites throughout the country.

OTA has included CHCs in its analysis of

agencies that might constitute a national system to

link people with dementia to services because CHCs

reach population groups that often are not served by

the other categories of agencies discussed in this

chapter—notably, poor people and ethnic minorities.

Overview of the Agencies

Some CHCs receive Federal funding under Section 330 of the Public Health Service Act, which

authorizes grants to public and private nonprofit

organizations that provide primary health care to

populations or areas that are “medically underserved.’ 11 To be eligible for Section 330 grants,

CHCs must have a governing board with a majority

of members who are users of the CHC’s services.

11A medic~ly undersem~ popu~tion or area is one with a shortage of health care services. Among the factors the U.S. Department of Heal& and

Human Services considers in determining whether an area or population is medically underserved are the accessibility of health sewices and people’s

ability to pay for health services (825).

89-150 - 90 - 10
284 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Section 330 CHCs also must adjust their fees to their

clients’ ability to pay (578).

As of 1987, nearly 600 CHCs nationwide were

receiving Section 330 grants (664). These CHCs

provided health care services at approximately 1,600

different sites, including their primary location and

satellite sites that ranged in size from full-service

community clinics to outposts of single health

professionals (664). At least some Section 330

CHCs exist in every State except Wyoming and in

all U.S. territories (578). Because of their emphasis

on serving medically underserved areas and populations, however, Section 330 CHCs typically are not

uniformly distributed throughout a State.

Section 330 CHCs are required to provide the

following primary health care services, either directly or through contracts or cooperative agreements with other agencies (825):

physician and physician extender services,

diagnostic laboratory and radiologic services,

preventive health services,

emergency medical services,

transportation services,

preventive dental services, and

pharmaceutical services.

The decision about whether to provide other services—

e.g., hospital, home health, mental health, dental,

and vision services-rests with an individual CHC’s

governing board (693).

Section 330 CHCs supplement their Section 330

grants with funds from other sources. In fiscal year

1985, Section 330 CHCs received 48 percent of their

total revenue from Federal grants, 16 percent from

Medicaid, 5 percent from Medicare, 6 percent from

other third party payers, 11 percent from patient fees,

and 14 percent from State, local, and other sources

(578). Federal Section 330 grants have been declining in recent years, so alternative sources of revenues are becoming increasingly important to CHCs.

In addition to Section 330 CHCs, there are an

estimated 500 to 750 other CHCs that do not receive

Section 330 grants (381,664). These CHCs do not

receive Section 330 grants for a variety of reasons.

Sometimes they do not apply for a grant because

they either cannot meet or choose not to meet one or

more Federal eligibility requirements-e. g., the

requirement that more than half the members of the

CHC’s governing board be users of the CHC’s

services (381,664).

Very little information is available about CHCs

that do not receive Section 330 grants. Anecdotal

evidence suggests that Section 330 CHCs and other

CHCs are similar in many ways, but that Section 330

CHCs tend to be larger and to provide a more

comprehensive range of services (381,664). Some

CHCs hat do not receive Section 330 grants are

affiliated with hospitals and are funded in part

through the hospitals. Such CHCs also may receive

funds from State and local governments, foundations, churches, and other philanthropic sources.

Many Section 330 CHCs, particularly the larger

ones, have a full complement of health care professionals, including physicians, physician assistants,

nurses, therapists, dentists, health educators, social

workers, and others. No information is available

about the number and type of staff in CHCs that do

not receive Section 330 grants. Nor is it known how

many CHCs of either type have staff who are

knowledgeable about dementia. A 1986-87 study of

10 Section 330 CHCs identified by the La Jolla

Management Corp. as having good programs for

elderly people (693) found that only 1 of the

physicians in the 10 CHCs had specialized geriatric

training, although some of the other staff members

in the 10 CHCs had attended geriatric training

workshops and seminars. No information is available about the extent to which CHC staff members

have specific training in dementia.

Who Is Served

In 1985, Section 330 CHCs served over 5 million

individuals, many of whom might not have received

health care services otherwise (578). Half of the

CHC users resided in high-poverty urban communities, and half resided in rural areas. Sixty-five

percent of the users were either black, Hispanic, or

members of other ethnic minority groups.

Section 330 CHCs are intended to serve the poor,

and 60 percent of the 5 million individuals who

received health care services from Section 330

CHC’s in 1985 had family incomes below the

Federal poverty level; 85 percent had family incomes below 200 percent of the poverty level.

Section 330 CHCs also serve some individuals who

are able to pay for part or all of their care. Individuals

whose family incomes are below the Federal poverty

level are charged nominal fees, if any, for services.

Individuals whose family income falls between 100

and 200 percent of the poverty level are charged a
Chapter 8-Agencies That Might Constitute a Uniform National Linking System ● 285

reduced fee based on their family income and family

size. Individuals with family incomes above 200

percent of the poverty level are charged the full fee

for CHC services.

The emphasis in many CHCs has been on

providing care for mothers and children. In 1985,45

percent of Section 330 CHCs’ clients were children.

Only 9 percent were people over age 65 (578).

The extent to which CHCs serve people with

dementia is not known. As comprehensive health

centers, Section 330 CHCs diagnose and treat people

with a variety of conditions. In 1982, the most

commonly observed diagnoses, in descending order,

were vaginitis, otitis media, urinary tract infection,

dermatitis, obesity, diabetes mellitus, abdominal

pain, adjustment disorder, bronchitis, and trauma

(118). This list suggests that the centers were not

seeing a large number of people with dementia at

that time. A current list, if one were available, might

include other diagnoses. It is also possible that

CHCs are providing primary health care for some

people with dementia but not identifying their

dementia. The 1986-87 La Jolla study mentioned

earlier found that some CHCs lacked specific means

to detect mental disorders, including dementia. The

reason was that many of them used adult, rather than

geriatric, screening criteria. The adult criteria miss

dementia and other problems that are prevalent

among the elderly (693).

As discussed later in this section, some CHCs

provide case management for the clients of Statefunded long-term care programs that serve elderly

and disabled people, including people with dementia. In addition, at least one CHC, Eastern Shore

Rural Health System, Inc., in Virginia, has a special

Alzheimer’s Disease Project that provides public

education about Alzheimer’s disease as well as

caregiver support groups and respite services (see

box 8-D).

Although the extent to which CHCs serve people

with dementia is not known, it is reasonable to

assume that CHCs that serve large numbers of

elderly people are more likely than other CHCs to

serve people with dementia. As noted earlier, in

1985, only 9 percent of Section 330 CHCs’ clients

were over age 65. The percentage of elderly clients

varies greatly among CHCs. The 1986-87 La Jolla

study found that depending on the CHC, elderly

people made up from 2 to 46 percent of its client

population (693). According to the National Association of Community Health Centers, the percentage

of elderly CHC clients is generally lower in urban

than in rural areas; in some large cities, elderly

people make up only 5 percent of all CHC users

(569).

The Health Resources and Services Administration (HRSA), which administers Section 330 grants

at the Federal level, has initiated several efforts over

the years to increase Section 330 CHCs’ services for

elderly people. In 1984, for example, it awarded $1.7

million in supplemental Federal funds to 57 Section

330 CHCs to pay for new or expanded programs for

the elderly that might later be replicated by other

CHCs (693).

HRSA has also sponsored joint initiatives with

the Administration on Aging to increase collaboration among CHCs, State units on aging, AAAs, State

and local health departments, and voluntary organizations that provide services for elderly people

(420). In 1987, for example, HRSA and the Administration on Aging conducted regional workshops

for personnel of State units on aging and associations representing CHCs at the State level (420,648).

One intended outcome of the workshops was to help

participating agencies overcome “turf” problems

that often interfere with the coordination of services

for elderly people.

As a result of the 1987 initiative, collaborative

projects involving aging network agencies and

CHCs were established in many States. In Kentucky,

the State Community Health Center Association and

the State Division on Aging developed a joint plan

that included the goal of training case managers in

the CHC and AAA systems to improve elderly

people’s access to both CHC and AAA resources

(420). In Utah, four health education fact sheetsincluding a fact sheet on dementia-were developed

for distribution to elderly people through CHCs,

senior centers, and other elderly services agencies

(420).

Some CHCs that have implemented successful

programs to serve elderly people did this in collaboration with AAAs and other aging network agencies

even before the 1987 initiative. The Shawnee Health

Services and Development Corp., which operates

three CHCs in southern Illinois that provide many

services for elderly people, credits the success of its

elderly services programs in part to coordination

with the local AAA, senior centers, and other aging

network agencies (631). Over the last 6 years, the
286 ● Confused Minds, Burdened Families: Finsding Help for People With Alzheimer’s & Other Dementias

number of elderly clients served by Shawnee’s three

CHCs has quadrupled, and the ratio of elderly clients

to total CHC clients has tripled. The local AAA has

paid for several programs implemented by Shawnee

(648).

Linking Functions

Information and Referral

CHCs provide their clients with

1=1

1A I

information about services and re-

~ ferrals to community service providers. OTA has no data on the

~

types of referrals provided by CHCs,

 and these undoubtedly vary depending on a CHC’s clientele and the training and

experience of its staff. The purpose of CHCs is to

furnish primary health care, however, and anecdotal

evidence suggests that the referrals provided by

CHCs are more often to other health care services

than to the long-term care, social, or other services

that also are needed for people with dementia.

OTA does not know how many CHCs maintain

comprehensive lists of community resources that

include the kinds of services that maybe needed for

people with dementia. Nor does OTA know how

many, if any, CHCs serve caregivers at a distance.

Case Management

is generally on

According to the National Association of Community Health Centers, CHCs pioneered and developed the concept of managed care

(578). The focus of care management or case management in CHCs

health care needs. If clients need

hospital, nursing home, or acute home health care, or

special medical services, CHC staff often arrange

and monitor the provision of these services. In

contrast, the findings of the few small studies that

addressed the question of case management in CHCs

suggest that CHCs generally do not provide the kind

of comprehensive, ongoing case management that is

needed by some dementia patients (478,693).

Most of the 10 CHCs in the 1986-87 La Jolla

study did not provide their elderly clients with a

comprehensive assessment that included social and

environmental as well as health status (693). The

professional staff of the 10 CHCs typically functioned individually and rarely came together as a

team to develop a multidisciplinary plan of care for

Photo credit: Alzheimer's Association and

Rush-Presbyterian/St. Luke’s Medical Center.

The main function of community health centers is to

provide primary health care. Consequently, the information

and referrals and case management provided by

community health centers generally focus on the health

care needs of their clients.

a client. Nor did they generally provide followup or

ongoing monitoring of services other than health

care services. Families frequently were not involved

in a client’s clinical evaluation, although they were

involved in support groups, respite care, and home

care programs in CHCs that provided these programs. A study of seven CHCs in New York found

that “CHCs frequently lacked the social workers

and/or community health aides necessary to make

referrals and act as liaisons to the myriad of other

agencies which may be involved with an elderly

individual” (478).

The amount of contact a CHC has with other

community organizations is relevant to its ability to

perform case management. According to the National Association of Community Health Centers,

most CHCs have contact with many different

agencies—social service agencies, community action programs, local government offices, and other

medical and dental providers—that allows for extensive referrals between CHCs and other agencies

(569). A 1984 study of 32 communities showed that

CHC coordination with other agencies was increasing (924), but the 1986-87 La Jolla study concluded

that even some of the 10 CHCs that were identified

by La Jolla as having good programs for elderly

people had not established relationships with some

of the types of agencies that are most likely to

provide services for elderly people (693).
Chapter 8---Agencies That Might Constitute a Uniform National Linking System ● 287

Box 8-D-The Alzheimer’s Disease Project of Eastern Shore Rural Health System,

a Community Health Center in Virginia

Eastern Shore Rural Health System (ESRHS) is a community health center that provides medical and other

services at three clinic sites in two Virginia counties on the southern tip of the Delrnarva Peninsula, which lies

between the Chesapeake Bay and the Atlantic Ocean. ESRHS serves a rural area with a population of 50,000 people,

half of whom have incomes below the Federal poverty level and half of whom are black. Since 1982, ESRHS has

established a variety of programs for elderly people, often with encouragement and funding from the Eastern Shore

Area Agency on Aging/Community Action Agency, which is the local AAA. From 1983 to 1986, the percentage

of EMU-IS’S clients who were elderly increased from 13 to 18 percent.

ESRHS’s Alzheimer’s Disease Project was initiated in 1984, when the local AAA gave ESRHS a $1,000 grant

to establish and run support groups for family caregivers of Alzheimer’s patients. In 1985, the project was expanded

to provide in-home respite services for Alzheimer’s family caregivers with a $7,000 grant from the Dementia Center

of Hampton Roads (Virginia). Currently, family caregivers of people with dementia can receive up to 20 hours of

respite care a week. Since 1986, funding for such services has been provided via an annual grant from the Hampton

Roads Alzheimer’s Association Chapter, and fees to caregivers for respite services are based on a sliding scale. The

Alzheimer’s Disease Project generally provides respite services to about 10 families at a time. To assess how the

patients and families who are receiving the respite services are managing, the project coordinator and a geriatric

nurse practitioner make home visits every 4 to 6 weeks.

In addition to offering support groups and respite services for the caregivers, ESRHS’s Alzheimer’s Disease

Project provides public education about dementia and about ESRHS’s services for people with dementia and their

families. Public education is provided through brochures, a quarterly newsletter, articles and advertisements in the

met@ and community meetings. The Alzheimer’s Disease Project also provides training related to dementia and

the care of dementia patients for the staff of local nursing homes and home health agencies and for other people who

work with dementia patients and their families. Lastly, the Alzheimer’s Disease Project furnishes families with

home health care supplies, including wheel chairs; incontinence supplies; skin care products, such as alternating

pressure pads; plate guards and special cups for feeding; and other assistive devices.

SOURCES: S. Ray, N. List, R. Clinkscale, et al., La Jolla Management Corp., Columbia, MD, “Assessment of the Current Utilization of

C/MHCs by the ElderIy and an Assessment of the Capability of C/MHCs To Develop Comprehensive Community-Based Primary

Care Health Service Systems for the Elderly,’ prepared for the Bureau of Health Care Delivery and Assistance, Health Resources

and Services Administration, Public Health Service, U.S. Departmen t of Health and Human Services, Rockville, MD, July 1987;

C.D. Rienerth, executive director, Eastern Shore Rural Health Services, Inc., Onancock, VA personal communication, Aug. 1, 1989;

G.V. Podeleo, executive director, Eastern Shore Area Agency on Aging/Community Action Group, Onancock, VA, letter to the

Office of Technology Assessment, U.S. Congress, Washington, DC, Aug. 16, 1989; and C. Dever, development director, Eastern

Shore Rural Health Services, Inc.,Onancock,VA personal communications, Aug. 2, 1989, and Sept. 9, 1989, and quarterly reports

on ESRH's Alzheimer’s Disease Project for June 14, 1984, Jan. 25, 1985, Oct. 25, 1985, Apr. 25, 1986, July 25, 1986, Oct. 24,

1986, Jan. 27, 1988, July 27, 1988, and for the period January to May 1989.

On the other hand, at least a few CHCs provide ment for some of its clients through two programs

comprehensive, ongoing case management, often in (see box 8-E).

connection with a State-funded long-term care

program. Shawnee Health Services and Development Corp. in Illinois, described earlier in this

section, has a contract with the State of Illinois to

function as a “Care Coordination Unit” to provide

case management for people who are eligible for

Illinois’ Community Care Program--i.e., people

who are over age 60 and fictionally impaired

enough to be eligible for Medicaid-funded nursing

home care (631,648,693).12 The case managers for

this program are based in Shawnee’s CHCs.

AltaMed Health Services Corp., a CHC in Los

Angeles, also provides comprehensive case managePublic Education

As noted in box 8-D, the Eastern

Shore Rural Health System’s Alzheimer’s Disease Project uses brochures: newsletters: articles and ad-

~ vertisements in the media; and com- — munity meetings to inform the public about dementia and services for people with

dementia. The CHCS in the 1986-87 La Jolla study

used presentations to other community agencies,

neighborhood groups, and participants in church

meal programs to inform the people about their

12See ch. 7 for further information about Illinois’ Community Care Program.
288 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

services for elderly people (693). Presumably, other

CHCs use similar methods. The focus of their public

education efforts probably reflects their main interests, however, which often do not include caring for

elderly people or people with dementia.

CHCs have the opportunity to provide patient and

family education in conjunction with their health

screening and primary health care services, and

many do so. Once in the community to screen for

high blood pressure or diabetes, for example, CHCs

can furnish people with information about any of a

variety of health problems and about services of the

CHC and other community agencies that may be

available to address the problems. OTA does not

know how often CHCs use such opportunities to

provide patient and family education about dementia

and services for people with dementia.

Outreach

m

CHCs conduct outreach programs

of various kinds, but no information

is available about how successful

they are in identifying people with

dementia or people who live alone

and otherwise might not seek care.

A 1986 study of 10 CHCs conducted by the National

Association of Community Health Centers found

that all 10 centers studied provided services in many

locations, including senior centers, adult day care

and congregate meal sites, and other locations where

the elderly frequently convene (569). Still, lack of

outreach services beyond these locations was identified as a barrier to the use of CHCs’ services by

elderly people.

Role in Allocating Services and Funding

Some CHCs that provide case management under

contract with State long-term care programs-e. g.,

AltaMed, described in box 8-E—also determine

clients’ eligibility for services paid for by the

programs. In general, however, CHCs do not control

people’s access to services other than the CHCs’

own services.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, CHCs offer several advantages:

. CHCs exist at more than 2,000 sites across the

country.

CHCs reach low-income people and members

of minority groups who often are not reached

by other health care delivery systems.

CHCs are located in many areas where other

service agencies are absent, including rural and

other medically underserved areas.

CHC’s usually provide medically focused case

management for their clients.

Many CHCs employ a full complement of

health care professionals, including physicians,

physicians’ assistants, nurses, social workers,

therapists, dentists, health educators, and others

who might be able to provide multidisciplinary

assessments and care plans for people with

dementia.

Despite these advantages, most CHCs are not

currently well equipped to link people with dementia

to services for several reasons. CHCs’ main purpose

is to provide primary health care services. The type

of case management performed by CHCs is typically

medical in orientation, and most CHCs do not

provide or routinely link people to the full range of

long-term care, social, legal, financial, and other

services that may be needed for people with dementia.

Many CHCs serve mostly mothers and children.

Such CHCs are unlikely to have staff with training,

expertise, or interest in working with people with

dementia. Over the years, CHCs have tended to

underserve elderly people. Moreover, even when

CHCs do see elderly people, they often do not use

screening criteria that can identify dementia in older

people. In addition, many CHCs do not have

relationships with the types of community agencies

that are most likely to serve people with dementia.

As noted earlier, some CHCs have programs

specifically for people with dementia, and some

provide public education, information and referrals,

outreach, and case management for elderly and

disabled people, including people with dementia.

The existence of these programs in some CHCs

suggests that they could also be implemented in

other CHCs. Implementing them without a large

infusion of funds for new programs, however, would

require a significant redirection of many CHCs’

efforts, which would adversely affect other CHC

programs and client populations.

Lastly, a national linking system composed of

CHCs could be directly funded by the Federal

Government through the approximately 600 CHCs
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .289

Box 8-E—The Linking Programs of AltaMed Health Services, a Community Health Center

in Los Angeles, California

AltaMed Health Services Corp. operates a community health center (CHC) with several locations in an

economically depressed, medically underserved area of East Los Angeles that has a predominantlyHispani c

population. AltaMed began developing programs for elderly people in 1981, and subsequently became the first CHC

in California to be licensed to provide adult day health care and the first Hispanic program to receive such licensure.

In addition to providing adult day health care, AltaMed currently operates two programs that link people to

services:

. the Linkages program, and

. the Multi-Purpose Senior Services Program (MSSP).

The Linkages Program is a program operated by AltaMed under contract with the State of California. The

Linkages Program provides assistance in locating and arranging services for elderly and disabled people who are

at risk of nursing home placement, but not necessarily impaired enough to be eligible for nursing home care paid

for by Medi-Cal (California’s Medicaid program). Some Linkages clients only need telephone referrals or help with

arranging services on a one-time basis. Others need and receive short-or long-term case management. As of 1987,

AltaMed’s Linkages Program was serving about 200 clients, 70 percent of whom were over age 60. The Linkages

Program does serve individuals with dementia, but OTA does not know how many.

MSSP is a Medicaid 2176 waiver program that AltaMed has operated under contract to the State of California

since 1986. The program provides comprehensive, ongoing case management for elderly people who are eligible

for nursing home care according to Me&Cal requirements but choose to remain at home. MSSP’s clients receive

an initial in-home assessment, referrals and assistance in arranging and monitoring needed services, monthly

followup either by phone or in person, and reassessment at 6-month intervals by a nurse/social worker team. MSSP

also pays for in-home and other services for clients if other funding for the services is not available. AltaMed’s

MSSP program serves individuals with dementia, although OTA does not know how many.

SOURCE: S. Ray, N. List,R. Clinkscale, et al., La Jolla Management Corp., Columbia, MD, ‘Assessment of the Current utilization of C/MHCs

by the Elderly and an Assessment of the Capability of C/MHCs To Develop Comprehensive Community-Based Primary Care Health

Service Systems For the Elderly,” prepared for the Bureau of Health Care Delivery and Assistance, Health Resources and Services

Administration, Public Health Service, U.S. Department of Health and Human Services, Rockville, MD, July 1987.

that currently receive Section 330 grant funds. To . to stimulate awareness of Alzheimer’s disease

include in the linking system the other 500 to 750

CHCs that do not receive Section 330 grants would

require the development of new criteria for identifying CHCs that would encompass these CHCs.

ALZHEIMER’S ASSOCIATION

CHAPTERS

The Alzheimer’s Association, also known as the

Alzheimer’s Disease and Related Disorders Association (ADRDA), is a national, privately funded,

voluntary association of families, service providers,

scientists, health care professionals, and other concerned individuals, founded in 1980 to confront the

problems of Alzheimer’s disease and related disorders. The association has five primary goals:

. to support research into the cause, treatment,

cure, and prevention of Alzheimer’s disease

and related disorders;

among the public and professionals;

. to encourage the formation of Alzheimer’s

Association chapters to create a nationwide

support network for families of people with

Alzheimer’s disease;

. to advocate for Federal, State, and local public

policies and legislation to assist Alzheimer’s

patients and their families; and

. to provide community programs and services

for people with Alzheimer’s disease and their

families (16).

As of May 1990, the Alzheimer’s Association had

210 chapters in 49 States (every State except Alaska)

(461).

OTA has included Alzheimer’s Associations chapters in its analysis of agencies that might constitute

a national system to link people with dementia to

services because the Alzheimer’s Association specializes in educating the public about dementia and
290 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-F—The Wisconsin Alzheimer’s Information and Training Center

In 1985, the Wisconsin legislature passed a bill to establish the Wisconsin Alzheimer’s Information and

Training Center. Following competitive bidding, the southeastern Wisconsin Chapter of the Alzheimer’s

Association was chosen to develop and operate the center.

The goals of center areas follows:

. to disseminate information about Alzheimer’s disease and related disorders through printed and audiovisual

materials, training, technical assistance, and a telephone hot line;

. to increase service providers’ knowledge about Alzheimer’s disease and related disorders;

. to identify the needs of Wisconsin’s Alzheimer’s patients and their families; and

● to link families and other caregivers of Alzheimer’s patients to appropriate services.

During 1984 and 1985, a statewide needs assessment was conducted to gather information about services in

Wisconsin. This and other available information was computerized and has since been updated regularly for use

in providing information and referrals and in advocating for new services.

The Wisconsin Alzheimer’s Information and Training Center provides information free of charge to anyone

who calls, including families, health care and social service professionals, community agencies, and voluntary

organizations. Most requests for information are made through the center’s toll-free 800 telephone line. Staff

members and trained volunteers, most of whom are Alzheimer’s family members, respond to the calls, Callers are

given information about State-funded respite care and other community services and up-to-date information on

Alzheimer’s disease, caregiving, and legal issues. Some family caregivers require telephone counseling, and their

calls often last between 30 to 45 minutes.

Out-of-State callers who are seeking services for a relative with Alzheimer’s disease living in Wisconsin are

generally referred to local service providers. Wisconsin residents seeking services for a relative with Alzheimer’s

living in another State are referred to an Alzheimer’s Association chapter in that State.

The center maintains a lending library of Alzheimer’s books, videos, slides, pamphlets, and brochures, and

publishes original pamphlets, brochures, slides, and audio/video cassettes with Alzheimer’s information. The center

provides caregiver training and offers physicians and other health care professionals a program to familiarize them

with available specialized Alzheimer’s medical services and care facilities. The center also offers technical

assistance to county agencies, service providers, and other organizations that are providing or are interested in

developing services, such as support groups, adult day care, in-home respite care, specialized residential care, and

assessment units for Alzheimer’s patients. In 1989, the center sponsored its third annual statewide conference on

Alzheimer’s disease that involved family members, professionals, paraprofessionals, and volunteers. It has

conducted over 100 workshops throughout the State on various facets of Alzheimer’s disease.

The day-to-day activities of the center are managed by its paid staff (including a social worker, a nurse, and

2 recreation therapists) and about 12 volunteers. The center has an advisory council of 18 people who are family

caregivers or representatives of community organizations such as the American Association of Retired Persons,

county agencies on aging, nursing homes, adult day centers, and home care agencies. Other Wisconsin Alzheimer’s

Association chapters participate in an advisory capacity.

SOURCE: B. Keyes, “Wisconsin Alzheimer’s Information and Training Center, ” program description, Milwaukee, WI, December 1987.

in providing information and referrals for people developed by the national office, and many chapters

with dementia and their families. The association’s

national office develops and distributes many different types of public education programs and materials

about dementia. The national office also has a

toll-free 800 telephone line to give callers information about Alzheimer’s disease and to refer them to

local chapters for help. Alzheimer’s Association

chapters distribute the public education materials

also develop and distribute their own public education materials. In addition, chapters sponsor meetings, conferences, and other events to educate the

public about dementia. Lastly, Alzheimer’s Association chapters are required by the national association to have a newsletter and a telephone information

and referral service, usually referred to as a

“helpline” (461).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 291

Overview of the Agencies

The Alzheimer’s Association’s national headquarters is in Chicago, Illinois. In addition to

developing and distributing public education programs and materials and operating the toll-free 800

telephone line, the national office raises and allocates funds for biomedical research on A1zheimer’s

disease and, to a lesser extent, for research on the

care of people with Alzheimer’s disease and related

disorders. 13 The national office coordinates the

activities of the association’s national board and the

chapters, provides technical consultation to service

providers and other organizations, and coordinates

the association’s advocacy efforts at the Federal

level. In 1987, the association’s national office had

a paid staff of 100 people and a budget of $11 million

funded with contributions from individuals, foundations, and corporations (313, 325).

The Alzheimer’s Association’s 200 chapters are

diverse, ranging from large chapters run by both paid

staff and volunteers to small chapters run entirely by

volunteers. Each chapter is a separate corporation

and generates its own funds through private contributions. The amount and kinds of services a chapter

can afford to offer depend largely on the funds it can

generate locally (484). The association’s national

office estimated that in 1988 the annual budgets of

individual chapters ranged from $10,000 to $500,000,

depending on chapter size and fundraising ability

(484).

Most chapters use only private funds to finance

their programs, but some chapters receive public

funds for various programs. One example is the

Southeastern Wisconsin Chapter, which was selected by the State of Wisconsin in 1985 to operate

the Wisconsin Alzheimer’s Information and Training Center. The center’s public education, information and referral, and other programs are described

in box 8-F. Funds for the center are provided by the

State. The operating cost is $150,000 a year (410).

In addition to the chapters’ public education and

information and referral programs, which are discussed at greater length later in this section, the

chapters provide many other types of programs and

services. Many chapters provide training about

dementia and caregiving techniques for family

caregivers, service providers, and others. In addition, all Alzheimer’s Association chapters offer

caregiver support groups. As of 1988, chapters

throughout the United States were sponsoring a total

of 1,500 caregiver support groups, all of which were

free and open to the public (313). These groups

provide their attendees with peer support, informal

counseling, and information about local service

providers. 14 Some chapters also provide short-term

counseling for some family caregivers.

As of 1988, about 70 Alzheimer’s Association

chapters were providing some form of respite

services for Alzheimer’s patients and their caregivers (313, 325). Some chapters use trained volunteers to provide respite care; some use paid respite

providers; and some use both. When paid respite

providers are used, chapters typically charge a fee

based on the family’s ability to pay and subsidize the

remaining cost of the services from chapter resources. A few chapters have a training program for

respite workers and maintain a list of trained respite

workers to whom they can refer fan-dies and others

(183).

Advocacy on behalf of Alzheimer’s victims and

their families is one of the key functions of the

AIzheimer’s Association and its chapters. At the

national level, the Alzheimer’s Association testifies

at congressional hearings and advocates for public

policies to meet the unique needs of people with

dementia and their caregivers. The association also

joins coalitions of national groups to support legislation and regulatory measures of importance to

people with dementia and their families. Alzheimer’s Association chapters conduct public awareness campaigns to draw public and legislative

attention to the problems of Alzheimer’s disease.

Many of the chapters advocate with State and local

government officials and legislators for programs to

benefit people with dementia and their families. The

association develops materials, conducts workshops,

and sponsors public policy forums to help chapter

members become more effective advocates. As a

result of all these activities, it is probably correct to

say that over the past 10 years, the Alzheimer’s

Association has been the driving force responsible

13~~dition t. its sponsorship of researck the Alzheimer’s Association has sponsored several demonstration projects and is currently Ce5WmO@

with the Robert Wood Johnson Foundation a demonstration project in which 19 adult day centers have received funding to create comprehensive systems

of care for people with dementia (712). The project is described in the last section of this chapter.

ld~e role of c=~ver SUpport grOUpS in providing their attendees with information about the quality of available services is dkCUSSd in ch. 5.
292 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Photo credit: Alzheimer's Association

The Alzheimer’s Association has been an effective advocate for increased Federal funding for biomedical research

and improved services for people with dementia.

for a 10-fold increase in Federal spending for

biomedical research on Alzheimer’s disease in that

period and for many of the other changes in Federal,

State, and local laws and regulations that affect the

availability of appropriate services for people with

dementia.

The Alzheimer’s Association has grown rapidly

since its establishment in 1980. New chapters are

constantly being formed, and the functions of the

national office and the chapters are expanding. As

this growth has occurred, the number of paid staff in

the national office and the number of chapters that

have paid staff has increased. Although some

chapters still operate without any paid staff, it is

clear that the association is becoming less an

organization operated by volunteers and more an

organization directed by volunteers but operated on

a day-to-day basis by paid staff and volunteers.

To learn about the capacity of Alzheimer’s

Association chapters to function as the basis of a

national system to link people with dementia and

their caregivers to services, OTA contracted for a

survey of Alzheimer’s Association chapters (484).15

A questionaire was developed and mailed to 10

chapters. The chapters were selected to reflect

diversity in size, in services provided, in composition of staff (i.e., volunteer or paid), in type of area

served (i.e., urban, suburban, or rural), and in other

characteristics. The 10 chapters surveyed by OTA’s

contractor were:

. the Palm Beach County Chapter,

. the Detroit Area Chapter,

. the New York City Chapter,

. the Honolulu Chapter,

. the Albuquerque Chapter,

● the Centra1 Virginia-Lynchburg Chapter,

. the Eastern Massachusetts Chapter,

. the Western North Carolina Chapter,

. the North Central Montana Chapter, and

. the Greater Kansas City Chapter (484).

OTA’s contractor interviewed each chapter’s president or executive director by telephone to obtain

answers to the questions. Some of the survey

findings are presented in the foIlowing discussion.

For several reasons, caution must be used in

generalizing from the results of the survey. The

number of chapters surveyed was small, and the

individual chapters surveyed were not randomly

selected. Moreover, the survey was conducted in

early 1988, and, as noted above, many Alzheimer’s

Association chapters have expanded their programs

and services since then (461). Nevertheless, the main

conclusion of the survey-that Alzheimer’s Association chapters vary greatly in the extent and sophistication of their programs to link people with dementia to services-is undoubtedly still true in 1990.

Who Is Served

Family members are the primary users of Alzheimer’s Association chapters’ services, but friends

and neighbors of people with Alzheimer’s disease,

health care and social service professionals, other

service providers, staff of State and local government agencies, researchers, journalists, students, and

some people who have Alzheimer’s disease also

contact the chapters for various reasons (186,484).

Family members are the primary users of the

chapters’ telephone helplines and support groups

and the sole users of chapters’ short-term counseling

and respite services.

15A complete report on tie survey of chapters conducted for OTA is available from the National Technical Information SeNice in Sp*@lel& VA

(see app. A).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 293

Alzheimer’s Association chapters respond to

requests for information and assistance from anyone

who calls, but particularly from family members of

people with dementia. Certain types of family

caregivers-notably ethnic minority caregivers, poor

caregivers, and caregivers who live in remote

areas-have been less likely than other types of

family caregivers to seek help from Alzheimer’s

Association chapters. The 10 Alzheimer’s Association chapters surveyed for OTA in 1988 reported that

few ethnic minority individuals were participating in

their programs (484). Nine of the 10 chapters

reported that they were not reaching particular

groups, including blacks, Hispanics, Native Americans, and Asian Americans.

Currently, the Alzheimer’s Association’s national

office and some chapters are expanding their efforts

to reach ethnic minority caregivers of people with

dementia (183,461). The national office has made

available to chapters training and support materials

to encourage minority participation and set apart a

half-day of the association’s annual meeting, held in

October 1989, to discuss minority issues (461).

Some chapters have established support groups

specifically intended for ethnic minority caregivers

(461,484).

Some of the 10 chapters surveyed for OTA in

1988 reported that they were not reaching lowincome dementia patients and their caregivers or

patients and caregivers who live in remote areas

(484). Three of the 10 chapters reported problems in

reaching low-income people. Interestingly, three

chapters said they were not reaching people with

high incomes. Five of the 10 chapters reported

problems in reaching people with dementia and their

caregivers who live in rural areas; one chapter

indicated that it has a toll-free telephone line to be

more accessible to these caregivers.

Only one of the 10 surveyed chapters specified a

problem in reaching people with dementia who live

alone and have no family members or other informal

caregiver to help them. Anecdotal evidence indicates, however, that Alzheimer’s Association chapters generally focus on serving family caregivers of

people with dementia and may not expect to serve

many individuals with dementia who live alone and

have no caregiver (183,461,485). The available data

on who is served by chapters indicate that chapters

serve very few such individuals (186,484).

Linking Functions

Information and Referrals

[s1

As noted earlier, each Alzheimer’s

Association chapter is required by

the national association to have a

telephone “helpline” to provide

callers with information about Alzheimer’s disease and to refer them

to local service providers (461). The number of calls

handled by chapter helplines and the sophistication

of their information and referral procedures vary

greatly from one chapter to another. Larger chapters

with paid staff generally handle larger numbers of

calls. The Cleveland Chapter’s helpline (see box

8-G) received more than 3,200 calls in the 4-month

period from April through July 1988 (186). Over the

past 3 years, the Detroit Area Chapter’s helpline

received 2,000 to 3,000 calls a year (484). In

contrast, some small chapters offering strictly “volunteers serving neighbors” programs report as few

as 3 to 4 calls a week (484).

Most calls received by chapter helplines are from

family caregivers. As noted in box 8-G, 80 percent

of the documented calls received by the Cleveland

Chapter’s helpline were from family caregivers

(186). In 1988, the New York City Chapter reported

that 70 percent of the 35 to 50 calls received daily by

its helpline were from family caregivers living in the

area; the other 30 percent were from out-of-State

families seeking help for a relative living locally,

fiends, neighbors, sitters, individual service providers, agencies, clergy, students, nursing homes,

lawyers, a few physicians, and people who feared

that they might have Alzheimer’s disease (484).

All 10 of the Alzheimer’s Association chapters

surveyed for OTA in 1988 reported using trained

volunteers to respond to helpline inquiries (484).

Many of these helpline volunteers were family

caregivers of people with Alzheimer’s disease.

Seven of the 10 chapters surveyed for OTA in 1988

had a paid professional on staff, usually a social

worker or nurse, who trained and supervised the

helpline volunteers, served as a helpline consultant,

and answered some helpline calls.

People call chapter helplines for various reasons

and receive many different kinds of responses. Box

8-G discusses the reasons given by callers to the

Cleveland Chapter’s helpline. Table 8-1 lists the

needs expressed by people who called the Detroit
294 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-G-The Cleveland Alzheimer’s Association Chapter’s Helpline

The Cleveland Chapter of the Alzheimer’s Association has a telephone helpline operated by both volunteers

and paid staff. in a typical month, the helpline receives more than 800 calls. If a caller requests copies of printed

materials or referrals to services, a form is completed to document the call. In the 4-month period from April through

July 1988, the helpline received 3,251 calls, 446 of which (about 1 out of 7) resulted in the completion of a helpline

form.

Sixty percent of the 446 documented helpline calls received in that period were either requests for general

information about Alzheimer’s disease or requests to be placed on the chapter’s mailing list; 25 percent were

requests for specific information from the chapter’s bibliography or about particular services. Eighty percent of the

446 calls were from family members of a person with dementia, and 13 percent were from professionals requesting

information for their clients. Ten calls during the 4 months were from students working on class projects; 4 were

from people interested in volunteer opportunities; and 6 were from individuals who were worried about their own

memory loss. Twelve calls were from local people concerned about a person with Alzheimer’s disease who lived

outside of the Cleveland area and 7 calls were from people out-of-town who were concerned about someone living

locally.

From April 1988 through July 1988, the helpline referred 40 callers to specific service providers. As part of

a study conducted for OTA in 1988 (see app. A), 26 of these 40 callers were subsequently interviewed All 26 were

caregivers of a person with dementia. When asked why they had called the helpline, 20 of the 26 caregivers said

they had called to get the names of people or organizations offering services for people with dementia; 13 said they

had wanted help deciding what types of services would be best for the person; 8 said they had wanted to know what

kinds of tasks an agency or professional caregiver could be expected to do; 8 said they had called to find out the

usual cost of hiring someone to provide in-home services; 6 said they had sought information about what types of

services are paid for by Medicare or Medicaid; and 4 said they had called to discuss a problem the patient or the

caregiver had with a service provider,

Some of the 26 caregivers said they had called for general information in order to understand a demented

person’s behavior and to figure out what to expect and how to respond. A women concerned about her sister’s

forgetfulness explained, “I wanted to know what could be done if she had Alzheimer’s disease. ’ A daughter who

stayed with her 80-year old mother on weekends noted ‘I wanted to find out if mom could stay alone; I didn’t know

when I called that it was dementia or what dementia was. A few caregivers said they had called the helpline just

because they needed someone to talk to. As one spouse put it, “I quit work and now that I’m home all day, I’m

always thinking about our problem. I get lonely sometimes. Brothers and sisters are out of the country, and our son

doesn’t want to be bothered. You know-I had to talk about it. ’

When asked why they had called the helpline instead of another source of information, several of the 26

caregivers indicated that the Alzheimer’s Association seemed the most appropriate place to call considering what

they were dealing with. The wife of a 76-year-old man with dementia noted, “You know, people talk-you hear

about things. Sounded like my husband so I thought I could talk to someone there. ” Many of the caregivers reported

reading an article or hearing something on television that gave them the idea to call the helpline. A nurse helping

a friend obtain services for her spouse observed that ‘‘since they are specific in dealing with Alzheimer’s disease

they would have the most information and resources. Three caregivers were referred to the helpline by a

professional. Nine caregivers had contacted other community agencies before calling the helpline.

When asked whether they had found any aspect of the helpline particularly helpful, some of the 26 caregivers

noted the caring attitude and attempts to facilitate service use on the part of the helpline’s staff. Individual

professionals were described as “very helpful,” “very nice,” and “gentle.” Some caregivers particularity

appreciated the thoroughness, promptness, or evidence of extra effort by the staff. One woman who called the

helpline in desperation after calls to other agencies and hospitals explained, “I’m very pleased with the help I

received from the Alzheimer’s Association and the social worker. The social worker agreed to come to Dad’s home

to talk about Mother’s problem.

SOURCE: S.K. Eckert, and K. Smyth, "A Case Study of Methods of beating and Arranging Health and Long-Term Care for Persons With

Demerit@’ contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington DC, May 1988.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .295

Table 8-l—Expressed Needs of People Who Called the

Detroit Alzheimer’s Association Chapter’s Helpline

and Responses Given by the Helpline, 1987

What did Helpline callers Percent of callers who

say they needed? expressed this need

General information . . . . . . . . . . . . . . . . . . . . . .

Referral for adult day care or respite care. . . . .

Referral for medical care . . . . . . . . . . . . . . . . . .

Referral for nursing home . . . . . . . . . . . . . . . . .

Help with patient management . . . . . . . . . . . . . .

Tributes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Referral for legal information or services. . . . . .

Referral to adult foster care . . . . . . . . . . . . . . . .

Autopsy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Financial information . . . . . . . . . . . . . . . . . . . . . .

Request for a speaker . . . . . . . . . . . . . . . . . . . .

36 %

23

11

9

5

2

2

1

0.6

0.4

0.3

Percent of callers who

Helpline responses received this response

Sent information . . . . . . . . . . . . . . . . . . . . . . . . .

Referred to in-home respite . . . . . . . . . . . . . . . .

Referred to medical care . . . . . . . . . . . . . . . . . .

Referred to a support group . . . . . . . . . . . . . . . .

Referred to adult day care . . . . . . . . . . . . . . . . .

Referred to nursing home . . . . . . . . . . . . . . . . .

Telephone counseling . . . . . . . . . . . . . . . . . . . . .

Onsite counseling . . . . . . . . . . . . . . . . . . . . . . . .

Arranged a speaker. . . . . . . . . . . . . . . . . . . . . . .

31 %

13

11

11

9

8

5

4

0.3

SOURCE: N.L. Mace, “The Role of ADRDA Chapters in Providing information and Referral Services for Persons With Dementia, ’’contract

report prepared for the Office of Technology Assessment, U.S.

Congress, Washington, DC, 1988.

Alzheimer’s Association chapter’s helpline in 1987

and the responses given by the helpline. These

figures are typical of the estimates given by the other

chapters surveyed for OTA in 1988 (484).

Despite differences in the helplines operated by

different Alzheimer’s Association chapters,

helplines have in common that they are informal and

ask few questions before responding to inquiries;

thus they pose minimal barriers to family caregivers

in obtaining information and referrals (484). Responses to helpline inquiries are immediate and

personal. The 10 chapters surveyed for OTA in 1988

consistently reported using an empathetic approach

to callers: “We listen, and the caregivers tell us what

they need” (484). Because many of the helpline

volunteers have been caregivers themselves, and

because the volunteers and paid staff members spend

so much time talking to callers, families feel

understood and supported. In the view of OTA’s

contractor, this listening/supporting function may be

as valuable to families as the information and

referrals they receive.

The information about available services that

Alzheimer’s Association chapters use to provide

information and referrals comes from various sources.

Some chapters, including the Greater Washington,

DC Chapter, have compiled directories of community services that may be needed for Alzheimer’s

patients and their caregivers (267). For the most part,

however, the methods used by chapters to obtain

information about community services are less

thorough. Some chapters use directories produced

by other agencies. Many obtain information about

community services through word-of-mouth reports

from families or professionals on the chapters’ board

or through informal networking with other community agencies (484). Some chapters refer callers to

other agencies for information about services (e.g.,

AAAs and family service agencies).

Two of the 10 chapters surveyed for OTA in 1988

were using computers to maintain information about

community resources (484). The other eight chapters were using files, but three of them had plans to

computerize their resource lists. One of the chapters

was not using a computer to maintain its list of

community resources because the chapter’s volunteers were not comfortable with using a computer

(484).

As noted in boxes 8-F and 8-G, at least some

Alzheimer’s Association chapters provide information and referrals for long-distance caregivers. The

Cleveland Chapter, for example, serves both local

families requesting information for a relative with

dementia living outside the chapter’s service area

and families calling from out of town about a relative

with dementia living in the Cleveland area (186).

Clearly, the capacity of Alzheimer’s Association

chapters to meet the information and referral needs

of people with dementia and their families varies

from one chapter to another. Some chapters have

well-developed information and referral procedures

and systematic methods for obtaining information

about available services. Other chapters are still in

the process of developing their information and

referral helplines and do not have systematic methods of collecting information about available services (484). Anecdotal evidence and the findings of

the survey conducted for OTA in 1988 indicate that

most chapters do not have formal followup procedures to determine whether helpline callers for

whom they provide referrals are successfully linked

to the services they need, although some chapters do
296 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-H—The Alzheimer’s Family Consultants Program of the Palm Beach County, Florida

Alzheimer’s Association Chapter

The Palm Beach County Chapter of the Alzheimer’s Association offers care management for people with

dementia through its Alzheimer’s Family Consultants Program. From October 1988 to June 1989, the program

provided care management for 361 people with dementia and 392 caregivers.

The Alzheimer’s Family Consultants program provides care management free of charge, according to need,

regardless of age or income. Most of the program’s clients are Alzheimer’s patients who live with a caregiver, but

the program also serves patients who live alone. The local sheriff, police department, and community businesses

refer people with dementia who live alone to the program.

The program has three full-time paid staff members: two registered nurses who serve as Alzheimer’s family

consultants, and a nurse supervisor. The program has received grants from two local government agencies: $11,000

from the City of Boca Raton in 1987, and $48,000 from the Palm Beach County Commissioners in 1988.

When a person with dementia enters the program, an Alzheimer’s family consultant makes sure the person has

had a thorough diagnostic evaluation, meets with the patient and family to discuss various care options, and then

arranges services for them. The family consultant discusses with the family the patient’s potential eligibility for

Medicare, Medicaid and other sources of funding for services and makes certain the family gets an attorney’s advice

about legal and financial issues related to the care of the person with dementia

The Alzheimer’s family consultants frequently arrange for clients to attend a specialized Alzheimer’s adult day

program sponsored by the Palm Beach County Chapter. They may also arrange in-home respite care. If the family

wishes, the family consultant will schedule the respite visits and negotiate prices with the respite care agency.

The Alzheimer’s family consultants follow-up regularly with phone calls or home visits to be sure their clients

are satisfied with the services they are receiving. The family consultants work with their clients throughout the

course of the dementia or until the person with dementia enters a nursing home.

The Alzheimer’s family consultants offer caregiving training to families and refer families to local support

groups. They also educate other community organizations about Alzheimer’s disease and provide technical

assistance to service providers who are developing programs for people with dementia. In 1989, Alzheimer’s family

consultants provided training for Palm Beach police officers about how to recognize and manage people with

dementia and participated in a program sponsored by the Palm Beach County Chapter to make available locator

identification bracelets to help the sheriff’s office identify lost and confused people and return them to their homes.

As the Family Consultants program has become better known in the county, it has received an increasing

number of requests from the community for help in crises involving people with dementia. The requests include

calls from neighbors of people with dementia who believe the people are at immediate risk and calls from the police

and other local officials who have identified a person with dementia who has no one to help him or her. Recently,

the Family Consultants program has been asked to provide expert testimony in several guardianship cases involving

individuals with dementia.

SOURCE: M.M. Barnes, executive director, Alzheimer’s Association Palm Beach Chapter, Palm Beach, FL, personal communication, Sept.

8, 1989.

have such procedures. Several years ago, the associ- caregivers who are unable to do so themselves

ation’s national office put together a Helpline (461,484). OTA is aware of several Alzheimer’s

manual to assist chapters in developing their Association chapters that provide all five functions

helplines. that OTA has defined as core case management

functions, although the chapters may not call what

Case Management they provide “case management.” One example is

Few Alzheimer’sAssociation chap- the Palm Beach County Chapter, which provides

ters report that they provide case what it calls ‘care management’ through its Family

management, but many chapters Consultants Program (see box 8-H). It should be

perform certain case management noted that the Palm Beach County Chapter’s care

functions, including helping care- management program serves people with dementia

givers define the kind of services who live alone and have no informal caregiver to

they need and contacting service providers for some help them (54).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 297

There is some discussion, at present, among

Alzheimer’s Association members about whether

providing case management is a priority function for

chapters. The discussion often flounders, however,

on different definitions of what case management is.

Some association members believe that providing

case management (as they define it) is an essential

part of the chapters’ role in helping people with

dementia and their families. Other members believe

that chapters should concentrate their efforts on

public education, information and referral, and other

functions, such as training caregivers and providing

respite services. Anecdotal evidence suggests, in the

meantime, that the number of chapters that provide

case management is increasing.

Public Education

!a—. —

——*\———

As noted earlier, the Alzheimer’s

Association has an extensive public

education program. The association’s national office sponsors public service announcements and publishes and distributes books, articles, and brochures about all aspects of Alzheimer’s

disease and the care of people with dementia. These

publications are available from the national office

and from the chapters. The national office publishes

a newsletter that is received by a half million people

nationwide (473) and develops and circulates audiovisual materials to educate the public about Alzheimer’s disease. Through its toll-free 800 telephone

line, the national office answers questions from

anyone about any aspect of the disease.

Alzheimer’s Association chapters also develop

and distribute many kinds of publications and

audiovisual materials about Alzheimer’s disease and

the care of people with dementia. Some chapters

have lending libraries with printed and audiovisual

materials on these topics (473,484). Some chapters

sponsor programs and public service announcements on radio and television. The chapters also

participate in health fairs, community meetings, and

conferences that provide opportunities to educate

the public about Alzheimer’s disease. As mentioned

earlier, all chapters are required by the association to

publish a newsletter, and the chapter newsletters are

a source of information about Alzheimer’s disease

and the care of people with dementia for all who read

them (461).

The national office supports the chapters’ public

education efforts in various ways, including the

provision of up-to-date information about Alzheimer’s disease and related issues. One objective of

the national office is to encourage consistency

among chapters in the information they provide for

the public, particularly information about new scientific findings and potential treatments for Alzheimer’s disease (461).

Outreach

~

Some Alzheimer’s Association

w

chapters have developed certain procedures to identify people with

dementia who need assistance but

are unlikely to contact a chapter or

to seek help on their own. These

procedures generally involve training individuals,

such as police and bank employees, to identify

people with dementia who may need assistance and

to notify the chapter or someone else who can help.

Alzheimer’s Association chapters also approach

physicians who may be treating people with dementia and encourage them to refer these people to the

chapter for help. The 10 Alzheimer’s Association

chapters surveyed for OTA in 1988 said they rely on

their public education programs and materials,

including newsletters, other publications, and public

service advertising, to reach people who may need

their services. Of the 10 surveyed chapters, 6

reported that other agencies referred clients to them;

4 said they were listed in the yellow pages; and 4 said

they were listed in handbooks published by other

agencies. For the most part, the chapters said that

they were successful in reaching white, middle-class

families (484).

Role in Allocating Services and Funding

Alzheimer’s Association chapters do not control

access to or funding for services other than those

they provide.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, Alzheimer’s Association chapters have

many advantages:

. The Alzheimer’s Association and its chapters

provide many public education programs and

materials about Alzheimer’s disease, dementia

and the care of people with dementia.
298 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

●

●

●

●

Alzheimer’s Association chapters provide information and referrals for people with dementia and their caregivers.

The public education, information and referral,

and other programs and services provided by

the Alzheimer’s Association and its chapters

are intended specifically to meet the needs of

people with dementia and their caregivers.

Alzheimer’s Association chapters respond to

inquiries from families and other informal

caregivers in a flexible, personal, and nonbureaucratic way. Because of this and because

of their focus on Alzheimer’s disease and

related disorders, families of people with dementia often experience a sense of being

understood and supported.

Some Alzheimer’s Association chapters provide case management.

Despite these advantages, there would be certain

drawbacks to designating Alzheimer’s Association

chapters as the basis of a national system to link

people with dementia to services. First, the capacity

of individual chapters to meet the information and

referral needs of people with dementia and their

caregivers varies. Some chapters have systematic

procedures for developing and maintaining an accurate list of available services and sufficient paid

staff and/or volunteers to operate an information and

referral program that would meet the needs of all

people with dementia and their caregivers in the

chapters’ service areas. Other chapters-particularly

some of the small, volunteer-run chapters that rely

on informal methods of gathering and dispensing

information about services—might have difficulty

operating a program that would meet those needs.

Another drawback to designating Alzheimer’s

Association chapters as the basis for a national

system to link people with dementia to services is

that many chapters do not have outreach procedures

to identify people with dementia who live alone and

have no informal caregiver to help them or people

with dementia whose informal caregiver is unable

for any reason to seek services for the person. In

addition, although many chapters assist some caregivers in defining their service needs and contacting

service providers, most chapters do not provide the

comprehensive case management that would be

necessary to locate, arrange, and monitor services

for individuals with dementia who do not have an

informal caregiver or for those that have a caregiver

who is unable to follow through on arranging and

monitoring services.

As discussed earlier, low-income and ethnic

minority caregivers have been less likely than other

caregivers to seek help from Alzheimer’s Association chapters. The Alzheimer’s Association’s national office and some chapters have recently

initiated special efforts to reach ethnic minority

patients and caregivers. Such efforts require a

substantial investment of chapters’ limited resources,

however, and it is unclear how many chapters will be

able to commit the necessary resources.

With additional funds, many of the drawbacks

cited above could be overcome. On the other hand,

some existing Alzheimer’s Association chapters

might not want to change their current operating

procedures to provide outreach and case management for all people with dementia, even if additional

funds were available.

In considering the drawbacks to designating

Alzheimer’s Association chapters to constitute a

national system to link people with dementia to

services, it is important to note that some caregivers

of individuals with dementia may be unlikely to

contact an Alzheimer’s Association chapter for

assistance because they do not identify the individual’s problem as Alzheimer’s disease. This is

probably especially likely to occur if the individual

has serious physical impairments in addition to his

or her dementia and has not been diagnosed as

having Alzheimer’s disease; it might also occur in

some instances in which the individual has Parkinson’s or Huntington’s disease or any dementing

disease or condition other than Alzheimer’s disease.

Additionally, anecdotal evidence indicates that some

caregivers perceive a stigma associated with the

diagnosis of Alzheimer’s disease; they might not

want to contact an Alzheimer’s Association chapter

for assistance. OTA does not know how many

caregivers would be unlikely to contact an Alzheimer’s Association chapter for any of these

reasons. Certainly, as public awareness of Alzheimer’s disease increases, any stigma associated

with the diagnosis is likely to be reduced, and

caregivers are more likely to identify the condition,

even in an individual with serious physical impairments.

Finally, it is clear that if Congress designated a

category of agencies other than Alzheimer’s Association chapters to constitute the national linking
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 299

system, the association and its chapters should be

involved in planning the system, training the staff of

the agencies that constitute the system, and monitoring its performance on an ongoing basis. Several

examples of linking programs and systems in which

Alzheimer’s Association chapters function in this

way have been described in this report (see, e.g., the

description of Missouri’s Alzheimer’s helpline in

box 7-A in ch. 7). As discussed in chapter 1, it is

essential to involve the Alzheimer’s Association and

its chapters in planning the linking system and

monitoring its performance in order to assure that the

system is dementia-friendly and dementia-capable.

FAMILY SURVIVAL PROJECT

The Family Survival Project (FSP) has evolved

from a task force of concerned families and community leaders who organized in the San Francisco Bay

area in 1976 to assist caregivers of adults with

progressive or irreversible brain impairment (199).

Its first efforts included documenting the problems

of caring for adults with irreversible brain impairment and advocating State and Federal laws to

develop services for brain-impaired adults and their

caregivers. In 1979, FSP received funding from the

State of California to develop a community program

of supportive services and training for the caregivers

of brain-impaired adults. In 1984, the State of

California decided to use FSP as the model for a

statewide system. Since then, FSP has functioned in

two

●

●

capacities:

As California’s Statewide Resources Consultant, FSP helped establish a statewide network

of 11 regional resource centers for families and

caregivers of brain-impaired adults (3 in 1986,

3 in 1987, and 4 in 1988) and currently helps

coordinate the network and performs a number

of other statewide functions.l6

As the Bay Area Regional Resource Center,

FSP servesas a regional resource center for the

families and caregivers of brain-impaired adults

in a 6-county area with about 5 million people

(405).

FSP’s clients include the families and caregivers of

individuals with dementia, stroke, traumatic brain

injury, brain tumor, and other diseases and conditions that cause brain impairment. The majority of its

clients are caregivers of people with Alzheimer’s

disease and other diseases that cause dementia

(200,235).

OTA has included FSP in its analysis of agencies

that might constitute a national system to link people

with dementia to services because FSP’s functions

as California’s Statewide Resources Consultant and

as the Bay Area Regional Resource Center closely

parallel those OTA considers essential to an effective system for linking people with dementia to

services. In addition, FSP’s program has been

duplicated throughout the State of California and

might be duplicated elsewhere.

Overview of the Agency

In its capacity as California’s Statewide Resources Consultant, FSP currently performs a number of functions:

●

●

●

●

●

●

●

●

It operates a statewide information clearinghouse on topics related to brain impairment and

the needs of caregivers.

It publishes regular information letters and

bulletins about regulatory changes, new programs, model programs, and research related to

brain disorders and services for brain-impaired

adults and their caregivers.

It provides technical training and consultation

to government agencies, service providers, and

volunteer organizations interested in developing new programs for brain-impaired adults and

their caregivers.

It coordinates the activities of government

agencies, service providers, and community

organizations to develop programs and services

for brain-impaired adults and their caregivers.

It offers personnel at California’s regional

resource centers an initial orientation, inservice

training sessions, and annual staff development

conferences.

It encourages public and private participation in

the financing and provision of services for

brain-impaired adults and their caregivers.

It conducts social policy research on the extent

and consequences of brain impairment for

individuals and their families.

It advocates public policy reforms to encourage

the development of services for brain-impaired

adults and their caregivers (102).

16For in.fomtion abut C!di.fornia’s statewide network of regional resource centers, see the discussion of California’s lirdc@ pm-~ ch. 7.
300 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

As the Bay Area Regional Resource Center, FSP

performs several additional functions:

●

●

●

It provides information and referrals to programs and services to meet the needs of family

caregivers of brain-impaired adults living in its

service area.

It conducts 3 support groups for caregivers of

brain-impaired adults and regularly refers caregivers to over 100 other support groups in the

region.

It evaluates family caregivers’ needs for supportive services and provides some supportive

services directly (e.g., short-term counseling,

family consultation, long-term care planning,

and training on caregiving techniques) and

other services via providers operating under

contract (e.g., respite, transportation, legal and

financial consultations, and neuropsychological evaluations) (199).

FSP derives the bulk of its funding from contracts

with California’s Department of Mental Health

(200) .For fiscal year 1987-88, FSP received $l,047,619,

including $440,664 to function as the Statewide

Resources Consultant, and $606,955 to function as

the Bay Area Regional Resource Center; each of the

10 other regional resource centers received about

$200,000. For fiscal year 1989, the California

legislature appropriated $5.2 million for both FSP

and the 10 other regional resource centers (14). FSP

also receives funds from foundation grants, private

donations, and fees or donations for services from

caregivers.

FSP’s staff serves both the Bay Area Regional

Resource Center and the Statewide Resources Consultant (199). All of these individuals are knowledgeable about dementia, and most hold bachelor’s

and/or master’s degrees in human services or social

work. Some of FSP’s staff serve as ‘‘resource

persons” for the Statewide Resources Consultant.

FSP’s Research and Information Program’s three

staff members operate the statewide information

clearinghouse and conduct social policy research

related to brain impairment (200). FSP’s Education

and Service Program’s three staff people educate the

public about brain impairment and offer technical

assistance to professionals and organizations interested in developing programs and services for

brain-impaired adults and their caregivers (405).

FSP’s Bay Area Regional Resource Center staff

members include two intake and resource specialists, who respond to initial inquiries and maintain

regional resource files; a family consultant, who

counsels caregivers about legal concerns, appropriate respite care, and other issues related to caregiving; two social workers, who perform indepth

assessments of individual families’ needs, develop

plans of care, provide short-term counseling, arrange

for respite and other services made available by

providers under contract to FSP, and make home

visits if and when respite services are initiated; and

a regional training specialist, who offers family

training on patient management and organizes

family support groups (405).

Public advocacy in support of programs and

services for brain-impaired adults and their caregivers has been a primary function of FSP since its

inception (199). In 1979 and 1983, FSP advocated

California legislation that led to the establishment of

the Statewide Resources Consultant and the statewide system of regional resource centers. FSP

currently organizes conferences and prepares testimony and reports for use in developing services for

brain-impaired adults and their caregivers throughout California. FSP also distributes information to

over 1,200 “key contacts’ that it uses to coordinate

advocacy activities and promote cooperation among

local, State, and national organizations.

Who Is Served

FSP’s primary focus is on serving the families and

other caregivers of brain-impaired adults, including

individuals with dementia. Anyone who calls, visits,

or writes FSP, however, can receive information

about brain impairment and related programs and

services. In 1987, the Statewide Resources Consultant responded to about 700 initial inquiries from

callers in other States or in regions of California

without an operating regional resource center (200).

The Bay Area Regional Resource Center responded

to about 1,500 initial requests for information and

referrals from callers in the more immediate area:

1,001 from families and other informal caregivers of

brain-impaired adults, 473 from service providers

and members of the general public, and 2 from

brain-impaired adults.

All the caregivers of brain-impaired adults who

want to participate in training events and support

groups offered by FSP at the Bay Area Regional
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 301

Resource Center are able to do so. In 1987, 1,287

people attended FSP-sponsored training events and

99 caregivers attended an FSP-sponsored support

group (405). Caregivers of brain-impaired adults

living in a six-county service area are eligible for

counseling, respite care, and other supportive services provided by or through the Bay Area Regional

Resource Center, but not all caregivers receive such

services. In order to receive them, caregivers must

first be referred by FSP’s intake and resource

specialist to the family consultant or social workers

for an indepth needs assessment. In 1987,636 of the

1,001 caregivers who contacted the Bay Area

Regional Resource Center for the first time chose to

go through the intake screening process, and 251 of

them were referred for an indepth needs assessment.

Of the 251 referred for assessment, 106 received

respite care, 90 received consultation/planning, 39

received legal/financial consultation, 8 received

counseling, and 8 received neuropsychological patient evaluations (405).

The majority (62 percent) of the 636 caregivers

who chose to go through FSP’s intake screening

process in 1987 were taking care of an individual

with dementia. The remaining caregivers were taking care of individuals with stroke (18 percent),

traumatic brain injury (16 percent), a brain tumor (4

percent), and other diseases and conditions that

cause brain impairment (4 percent) (200).

For consultation/planning, legel/financial consultations, counseling, and family support groups, FSP

generally solicits a “suggested donation” from the

brain-impaired adult’s family. For respite care, FSP

charges a copayment based on the family’s income.

In 1987, 75 percent of the 106 families who used

FSP’s respite services contributed to the cost of

respite care; the average cost for FSP to provide a

family with respite services for a month was $327,

and on average, $27 of this was paid by the family,

and $300 was paid for with State funds (200).

Linking Functions

Information and Referral

[=1

Providing information and referrals to the family caregivers of

brain-impaired adults is a principal

function of FSP, both as California’s Statewide Resources Consult-

~ ant and as the Bay Area Regiona l

Resource Center. As noted earlier, in its capacity as

the Statewide Resources Consultant, FSP maintains

a statewide database of information about brain

impairment, related caregiving problems, and services for brain-impaired adults and their caregivers.

FSP collects data from regional resource centers on

caregivers, patients, services, and costs of services in

their regions for use in the statewide database, and

it analyzes these data to identify unmet needs (200).

FSP also refers callers to regional, State, and

national programs and services for brain-impaired

adults and their caregivers.

In its capacity as the Bay Area Regional Resource

Center, FSP maintains comprehensive lists of formal

and informal in-home and community services for

brain-impaired adults and their caregivers in each

county of its six-county service area. It also maintains a resource library that distributes information

packets and lends books, videotapes, and reference

materials about brain impairment and related issues.

FSP can respond to requests for information made by

telephone, in writing, or in person. It has a toll-free

telephone number to serve long-distance caregivers

seeking information and referrals to services for a

brain-impaired relative living in the San Francisco

Bay area.

The Bay Area Regional Resource Center’s intake

and resource specialists maintain regional resource

files and take most calls from frost-time callers.

When someone calls FSP, these staff members listen

and then try to assist the caller in determining what

he or she needs so they can refer the caller to

appropriate resources. Some callers are referred

directly to other community agencies that provide

specific services. Other callers are referred to FSP’s

family consultant or to social workers for followup

assistance with legal concerns, respite care, and a

variety of other issues related to caregiving. FSP’s

intake and resource specialists can handle as many

as 30 calls a day.

First-time callers who do not wish to go through

the intake screening process are sent packets of

written material detailing FSP’s programs and other

community programs and services for brainimpaired adults and their caregivers. In 1987, the

Bay Area Regional Resource Center sent about 900

packets of written materials to first-time callers. All

of the packets include the telephone number of

FSP’s family consultant in case an inquirer wants

more information or assistance (200).
302 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Case Management

Although the organization does

not say that it provides case management, FSP provides all five functions that are included in OTA’s

definition of case management for

some of the people it serves as the

Bay Area Regional Resource Center. If an intake and

resource specialist at FSP believes that a family

caregiver or other caller needs assistance beyond

information and referral, he or she refers the caller

for an indepth needs assessment (405). The assessment of the caregiver’s and brain-impaired adult’s

needs is conducted either by FSP’s family consultant

or by one of FSP’s social workers, who gathers

information through an interview with the caregiver

on the telephone, at FSP’s office, or at the caregiver’s home. The purpose of the assessment is

four-fold:

1. to determine what functional problems of the

brain-impaired adult necessitate additional

services,

2. to determine how the caregiver perceives the

caregiving situation,

3. to determine what impact caregiving has had on

the caregiver’s physical and/or mental health,

and

4. to collect demographic data to assist in developing a statewide database on caregivers of

brain-impaired adults.

After FSP’s family consultant or social worker

assesses the caregiver’s and brain-impaired adult’s

needs and starts a case file, he or she recommends

services. The recommended services are usually

provided either directly by FSP (e.g., short-term

counseling, family consultation, long-term care

planning, and training on caregiving techniques) or

by service providers under contract to FSP (e.g.,

respite, transportation, legal and financial consultation services, neuropsychological evaluations). Some

services are provided by community agencies or

service providers with which FSP does not have

contracts. In 1987, FSP contracted for 25,510 hours

of in-home respite, 1,946 days of day care, 59 hours

of legal or financial consultation, 74 hours of

neuropsychological patient evaluation, and 16 oneway transports (200).

An FSP staff member, usually the family consultant or social worker who originally assessed the

family’s needs, maintains ongoing contact with a

family using FSP-recommended services (405). If

respite services are involved, the contact person is

the social worker who arranges the respite services

and monitors the services at monthly intervals. An

FSP staff member gives caregivers verbal and

written instructions on how to use the services, and

FSP’s staff coordinates information about the caregiver’s situation with the service provider. An FSP

staff member telephones to make sure that families

have been linked successfully with community

agencies or services with which FSP does not have

contracts.

At 6-month intervals, families receiving services

are reassessed by the family consultant or social

worker to determine what, if any, changes in their

situation may warrant revising the plan of care and

to measure the effectiveness of service interventions

on the caregiver’s well-being (405). If there is a

significant change in the caregiver’s or brainimpaired person’s situation or if a major crisis

occurs, families may be reassessed before the

6-month period has elapsed.

FSP uses various means to try to ensure the

quality of services provided by or through the Bay

Area Regional Resource Center (405). In addition to

holding regular case conferences and performing

6-month reassessments, FSP sends family caregivers a client satisfaction survey. Respite providers—including home care agencies, day care

programs, and inpatient respite facilities-are required to submit with their bid package information

on licensing, staff qualifications, program services,

internal quality assurance procedures, and insurance

verification. FSP staff members visit respite providers to meet their staff and observe their programs

before signing a contract. Similarly, FSP staff

members screen attorneys and neuropsychologists

for their expertise and sensitivity to the needs of

caregivers of brain-impaired adults before FSP

contracts for their services.

Public Education

m

FSP provides extensive public

education to increase public and

-a

——— professional awareness of the needs ——

*

of brain-impaired people and their

— caregivers (200). In its capacity as

=

the Statewide Resources Consultant, FSP regularly distributes information letters and

bulletins to a general mailing list of more than

15,000 individuals and groups throughout California
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .303

and provides information and technical assistance to

California’s regional resource centers. It also distributes a quarterly newsletter with updated information

on services, public policy, research, and available

resources for brain-impaired adults and their caregivers. FSP maintains an updated speakers file of

professionals and consumer advocates (200).

For professionals who deal with brain-impaired

adults, including individuals with dementia, FSP

offers training programs that cover topics ranging

from patient management to legal and financial

matters. FSP also publishes a bimonthly “Training

Events Calendar,’ which includes information about

training” opportunities and upcoming State and

national conferences (200).

For government agencies, service providers, and

volunteer groups interested in developing new

programs and services for brain-impaired adults and

their families, FSP often provides technical assistance-e.g., training, consultation, and information.

The organizations that FSP has helped include the

Brain Damage Coalition of California, as well as

local chapters of the Alzheimer’s Association and

the National Head Injury Foundation (199).

As noted earlier, in its capacity as the Statewide

Resources Consultant, FSP conducts social policy

research. Among the studies FSP has conducted are

a study of publicly funded and third-party programs

available to brain-impaired adults and their caregivers, a study of the cost of care of brain-impaired

adults, and a study of employed caregivers of

brain-impaired adults (200).

FSP also seeks to educate the public about brain

impairment and related issues in its capacity as the

Bay Area Regional Resource Center (199). The

primary way it does this is through community

forums and fact sheets, handbooks, and brochures.

Outreach

Although FSP conducts extensive public education programs, it

does not have specific outreach

procedures to identify brainimpaired adults or caregivers who

need assistance but are unlikely to

seek help on their own or to be referred to FSP by

someone else. Brain-impaired adults who live alone

and have no relative or friend to help them and

overburdened caregivers who are not connected to a

community agency or individual health or social

service provider are unlikely to be reached by FSP.

To assist caregivers in rural areas, some of

California’s regional resource centers use an “outstationed” family consultant. For some rural families, the outstationed family consultant may be the

only source of information and patient management

assistance in the community (405).

Role in Allocating Services and Funding

FSP does not control access to, or funding for,

services other than those (e.g., respite services) it

makes available.

Summary

As an agency that might be designated to serve as

the basis of a national system to link people with

dementia to services, FSP offers many advantages:

●

●

●

●

FSP is part of a well-developed, easily accessible statewide system that provides information

and referrals to services for brain-impaired

adults and their caregivers in California. As

California’s Statewide Resources Consultant,

FSP maintains a statewide database of information about brain impairment, related caregiving

problems, and service options for brainimpaired adults and their caregivers. As the

Bay Area Regional Resource Center, it maintains comprehensive lists of services in each of

the counties in its service area.

FSP assesses the needs of some caregivers of

brain-impaired adults who call the agency and

recommends services that are provided either

directly by FSP (e.g., short-term counseling,

family consultation, long-term care planning,

and caregiver support groups), by service

providers under contract to FSP (e.g., legal and

financial consultation, transportation, and respite services), or by other providers in the

community.

FSP follows up to ensure that brain-impaired

adults and their caregivers receive the recommended services.

FSP provides education and training for caregivers, professionals, and other individuals

who deal with brain-impaired adults.

FSP is currently established only in California. If

FSP were to be designated as the basis of a

nationwide system to link people with dementia to

services, it would have to be replicated throughout
304 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

the country. FSP’s programs have been imitated

throughout California and informally by organizations that are developing services for people with

dementia and their caregivers in other States, so

replication throughout the country might be accomplished fairly easily.

Although FSP’s functions and goals closely

parallel those OTA finds essential for an effective

system to locate and arrange services for people with

dementia, most of the services provided by FSP

focus on the needs of the caregivers of brainimpaired adults. In the absence of outreach procedures, people with dementia who live alone and have

no caregiver to help them may not be identified by

FSP and, as a result, may not be connected to the

services they need.

REGIONAL ALZHEIMER’S

DIAGNOSTIC AND ASSESSMENT

CENTERS

In the past few years, some States have established regional Alzheimer’s diagnostic and assessment centers. Although the names and functions of

these centers vary from State-to-State, all the centers

have certain things in common. They are all

associated with medical centers. They all offer

individuals suspected of having Alzheimer’s disease

or a related disorder a diagnosis and a comprehensive assessment by a multidisciplinary team that is

knowledgeable about dementia, and they all develop

a plan of care for each individual that typically

includes recommendations regarding appropriate

health care, long-term care, social, and other services. Some regional Alzheimer’s diagnostic and

assessment centers provide services such as medical

treatment, psychiatric treatment, adult day care,

caregiver education and training, and caregiver

support groups, and some centers assist in locating

and arranging services for their clients. Many of the

centers also conduct biomedical and clinical research.

OTA has included regional Alzheimer’s diagnostic and assessment centers in its analysis of agencies

that might constitute a national system to link people

with dementia to services for several reasons. One

reason is that such centers are currently serving

people with dementia. More importantly, however,

the centers provide people who are suspected of

having Alzheimer’s or another dementing illness an

accurate diagnosis and a comprehensive multidimensional assessment. Many diseases that cause

dementia cannot be cured at present, but some can be

cured or ameliorated if they are diagnosed accurately

and treated correctly. Identifying these curable

diseases is the first step in caring for people with

dementia. Individuals who have a dementing disease

that is not curable still may have other treatable

conditions that exacerbate their dementia and make

them less able to function independently and more

difficult for their families and others to manage. A

comprehensive evaluation can help to identify these

potentially remediable conditions. Lastly, a comprehensive evaluation provides the information that is

needed to match an

services.

Overview

At least 10 States

individual with appropriate

of the Agencies

have one or more regional

Alzheimer’s diagnostic and assessment centers (513).

The regional Alzheimer’s diagnostic and assessment

centers in five States-California, Florida, Illinois,

New Jersey, and Pennsylvania—are described in

this section. Connecticut, Kentucky, Maryland, New

York, and Ohio also have regional Alzheimer’s

diagnostic and assessment centers, and other States

may have such centers as well. Detailed information

about the centers in California, Florida, Illinois, New

Jersey, and Pennsylvania is presented in this section

to give a sense of some of the similarities and

differences among existing centers. No implication

is intended about the relative merits of the centers in

these five States v. the centers in other States.

All the centers are quite new. California began

developing its centers in 1984 (227), and the centers

in other States have been established since then.

The regional Alzheimer’s diagnostic and assessment centers in California, Florida, Illinois, New

Jersey, and Pennsylvania all use a multidisciplinary

team to provide diagnosis, comprehensive assessments, and other services for their clients. The

composition of the team varies from center to center,

but typically includes a physician (e.g., geriatric

internist, neurologist, psychiatrist) and other professionals (e.g., clinical psychologist, social worker,

nurse) (55,222,227,306,522).

In all five States, startup funding for the regional

diagnostic and assessment centers came from a

combination of State funds and public and private

grants (55,220,225,364,599). Medicare, Medicaid,

and private insurance cover some of the costs of
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .305

diagnosis, assessment, and medical or psychiatric

treatment provided by some of the centers. In

addition, all of the centers derive some of their

funding from client fees. All of the States but

Pennsylvania have continued to provide funds for

their centers’ operating costs (14,364).

California’s Alzheimer’s Disease Diagnostic and

Treatment Centers: California has a statewide

system of nine centers called ‘‘Alzheirner’s Disease

Diagnostic and Treatment Centers. ” The nine centers and their locations are:

●

●

●

●

●

●

●

●

●

The

Program for Alzheimer’s Disease Care and

Education, University of California/Langley

Porter Psychiatric Institute in San Francisco;

University of California, Davis-Northern California Alzheimer’s Disease Center, Alta BatesHernck Hospital in Berkeley;

Alzheimer’s Disease Diagnostic and Treatment

Center, University of California/Davis Medical

Center in Sacramento;

Alzheimer’s Disease Diagnostic and Treatment

Center, University of Southern California/St.

Barnabas Senior Center in Los Angeles;

Southern California Alzheimer’s Disease Diagnostic and Treatment Center, University of

Southern Califomia/Rancho Los Amigos Medical Center in Downey;

Alzheimer’s Disease Diagnostic and Treatment

Center, University of California/San Diego

Medical Center in San Diego;

Alzheimer’s Disease Center, Stanford University/

Palo Alto Veterans Administration Medical

Center in Palo Alto;

Alzheimer’s Disease Diagnostic and Treatment

Center, University of California, San Francisco/

Fresno Veterans Administration Medical Center in Fresno; and

Alzheimer’s Disease Diagnostic and Treatment

Center, University of California, California

College of Medicine/Valley Medical Center in

Irvine (335).

functions of the nine California centers are

described in box 8-I. In 1984, the California

legislature appropriated $1 million to initiate the

statewide system of diagnostic and treatment centers

(225). The legislature has provided funding for the

centers’ operation each year since then. In fiscal year

1988-89, $2.9 million was appropriated for this

purpose (14).

Florida’s Memory Disorder Clinics: Florida has

four regional Alzheimer’s diagnostic and assessment centers called “Memory Disorder Clinics.”

The clinics were established as part of the Florida

Alzheimer’s Initiative enacted in 1985 (214). The

memory disorder clinics are located at the following

sites:

●

●

●

●

The

Suncoast Gerontology Center at the University

of South Florida Medical School in Tampa,

Center on Adult Development and Aging at the

University of Miami Medical School in Miami,

Wein Center at the Mount Sinai Medical Center

in Miami, and

Shands Teaching Hospital at the University of

Florida Medical School in Gainesville (222).

clinics in Tampa and Miami have multilingual

staff and print their-publications in both English-and

Spanish (222).

All of Florida’s memory disorder clinics offer

individuals with memory impairment a diagnosis

and assessment by a multidisciplinary team, a plan

of care that includes recommendations about needed

medical, psychiatric, and other treatment, and referrals to community service providers (222). With the

patient’s and/or family’s permission, the clinics

forward a report of the diagnosis and recommended

plan of care to the patient’s primary care physician

and consult with the primary care physician regarding ongoing medical management.

Florida’s memory disorder clinics provide extended medical and psychiatric treatment for some

of their patients (222). The clinics also provide

caregiver support groups and counseling for families

about caregiving and legal and financial issues.

In 1985, the Florida legislature appropriated

$500,000 to establish the four Memory Disorder

Clinics (220). In fiscal year 1988-89, the legislature

provided nearly $0.9 million to operate the clinics

(14). The clinics are eventually supposed to support

themselves through an Alzheimer’s Disease Trust

Fund consisting of monies from gifts, grants, and

other sources; as of 1988, however, Florida was

having difficulty expanding its system of memory

disorder clinics statewide because of funding limitations (302).

Illinois’ Regional Alzheimer’s Disease Assistance Centers: Illinois has two regional diagnostic

and assessment centers called ‘Regional Alzheimer’s

Disease Assistance Centers. ” These centers (see
306 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-I--California’s Alzheimer’s Disease Diagnostic and Treatment Centers

In 1984, the California legislature passed a law mandating the establishment of Alzheimer’s disease diagnostic

and treatment centers. Subsequently, contracts for the development of the centers were awarded to nine university

schools of medicine in various parts of the State. Six centers were established in 1985, and three more began

operating in 1989.

California's nine Alzheimer’s Disease Diagnostic and Treatment Centers are currently required by the State:

1. to provide diagnostic and treatment services for Alzheimer’s patients, including those under age 65;

2. to conduct research to discover the cause of, and treatment for, Alzheimer’s disease;

3. to provide training, consultation, and education to caregivers of Alzheimer’s disease patients;

4. to increase the training of health care professionals about Alzheimer’s disease;

5. to develop a uniform data system to compile demographic, medical, and service use information for each

patient seen at the centers; and

6. to reevaluate all of their Alzheimer’s patients annually.

The nine centers offer their patients a comprehensive evaluation that typically includes a medical, neurological,

psychiatric, psychological, and social assessment and may also include a dental, audiological, and podiatric

examination and a nutritional evaluation. If there are concerns about whether a patient can be cared for effectively

at home, a social worker or nurse practitioner assesses the person’s home env ironment. Following the assessment,

members of the center’s multidisciplinary team discuss options for the patient care and meet with the patient and/or

the patient’s family to develop a plan of care. The services the centers offer their patients vary but can include

nursing, social work, pharmacy, occupational therapy, and physical therapy. Three centers (in Downey, San Diego,

and Berkeley) have adult day care programs.

California’s Alzheimer’s Disease Diagnostic and Treatment Centers refer their patients to community services,

but they generally do not provide case management unless the staff believe that a patient and his or her family require

special assistance. An exception is the St. Barnabas Senior Center in Los Angeles, which provides extensive case

management for some of its clients.1

In addition to conducting research on Alzheimer’s disease, the staff at California’s Alzheimer’s Disease

Diagnostic and Treatment Centers give lectures and presentations to community groups to educate them about

Alzheimer’s disease and related issues, In addition, the centers offer caregiver training and support groups for family

caregivers and education and training programs for health care and social service professionals and other service

providers. The centers offer academic courses and residency internships to physicians, postdoctoral students, and

graduate students in social work, nursing, psychology, public health, dentistry, and associated fields.

Some of the Alzheimer’s Disease Diagnostic and Treatment Centers have adapted their programs to meet the

special needs of individuals with dementia in their service area. For instance, the center in San Diego is developing

culturally and linguistically appropriate neuropsychological tests to more effectively serve the large Spanishspeaking population in San Diego County. The center in Sacramento has worked with community agencies and area

physicians to develop services that can be accessed locally because of its rural service area.

1The case management provided by the Alzheimer’s Disease Diagnostic and Treatment Center at the St. Barnabas Senior Center in Los

Angeles is discussed later in this section.

SOURCES: P.J. FOx, DA. Lindeman, and A.E. Benjamin, Status of Alzheimer’s Disease Diagnostic and Treatment Centers and Alzheimer’s

Disease Research Grants in California (San Francisco, CA: University of California Institute for Health and Aging, January 1986);

P.J. FOx, D.A. Lindeman, and A.E. Benjamin, Evaluation of Alzheimer’s Disease Diagnostic and Treatment Centers in California:

1987 Project Year (San Francisco, CA: University of California Institute for Health and Aging, January, 1988); D.A. Lindeman,

administrative director, Northern California Alzheimer’s Disease Center, personal communication Nov. 20, 1989.

box 8-J) provide a comprehensive medical evalua- metropolitan area. The other center at Southern

tion for individuals who are thought to have Illinois University School of Medicine serves the

Alzheimer’s disease, develop a plan of care for each predominately rural, downstate counties (349).

individual, and assist the individuals and their The Illinois legislature appropriated $170,000 to

caregivers in locating and arranging services in their cover startup costs for the two centers in 1987 (55).

communities (349). One center at Rush-Presbyterian- In fiscal year 1989, the legislature appropriated $1.2

St. Luke’s Medical Center serves the Chicago million for the operating costs of the centers (14).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .307

Box 8-J—Illinois’ Alzeimer’s Disease Assistance Centers

Illinois has two Alzheimer’s Disease Assistance Centers associated with medical schools--one m Chicago and

one in Springfield-that provide diagnosis and assessment for people with Alzheimer’s disease and other dementing

illnesses. The centers provide their patients comprehensive evaluations consisting of a general physical and

neurological examination, neuropsychological testing, laboratory tests, and psychiatric and psychosocial

evaluation. After a consultation with the patient, the patient family, and the evaluation team, the team’s social

worker assists the family in arranging medical and social services for the patient and helps the family find a support

group and/or family counseling services.

Medical followup generally consists of consultation with each patient’s primary care physician and the

provision of semi-annual reevaluations. As the number of clients served by the southern Illinois University Center

has increased, the center has devoted more resources to providing ongoing case management: the center’s social

worker and other staff members maintain at least monthly contact with patients who require special attention.

In addition to its current services, each of the Alzheimer’s Disease Assistance Centers is developing a system

of hospitals or medical centers (known as ‘‘primary providers’ to function as local sites for diagnosis and treatment

for Alzheimer’s patients. Each center is also developing a system of community health care, mental health, and

social service providers to which Alzheimer’s patients and their families can be referred Each center has compiled

a county- by-county database of available community services for its region.

SOURCE: M. Barringer, clinical coordinator, Southern Illinois University School of Medicine, Alzheimer’s Center, Springfield, IL, personal

communications, Feb. 2, 1988, Aug. 19, 1988, and Nov. 5, 1988.

New Jersey’s Regional Alzheimer’s Diagnostic and dementia-specific adult day care and serves as a

and Assessment Centers: New Jersey has two clearinghouse for information about Alzheimer’s

regional Alzheimer’s diagnostic and assessment

centers:

. Institute for Alzheimer’s Disease and Related

Disorders, established in 1985 at the Robert

Wood Johnson Medical School in Piscataway;

and

● Alzheimer’s Evaluation Program, established

in 1986 at the University of Medicine and

Dentistry of New Jersey, School of Osteopathic

Medicine, in Stratford.

New Jersey’s two Alzheimer’s diagnostic and

assessment centers work in conjunction with eight

State-funded geriatric assessment programs located

in medical centers throughout the State to provide a

coordinated system of diagnosis and assessment for

people suspected of having Alzheimer’s disease

(272). The centers rely on their patients’ primary

care physicians to provide ongoing medical treatment (599). Both of the centers provide their patients

with referrals to community services, and both

disease for the general public (599). The center

maintains a statewide directory of services for

Alzheimer’s patients (599).

In 1986, the New Jersey legislature appropriated

$500,000 to fired the two centers’ startup costs

(599). In fiscal year 1989-90, the New Jersey

legislature appropriated $615,000 for their operating

costs (14).

Pennsylvania’s Diagnostic and Evaluation Centers for Alzheimer’s Disease: Pennsylvania has 11

regional Alzheimer’s diagnostic and assessment

centers called “Diagnostic and Evaluation Centers

for Alzheimer’s Disease” that replicate a model

program developed by the Harrisburg Institute of

Psychiatry under a contract with the Pennsylvania

Department of Aging (306). These 11 centers, all

established since 1985, augment the services provided by 21 geriatric assessment programs in the

State. Pennsylvania’s 11 Diagnostic and Evaluation

Centers are located at the following sites:

centers offer consultation, education, and training ●

for family caregivers and service providers.

●

One of New Jersey’s centers, the Institute for ●

Alzheimer’s Disease and Related Disorders in Pis- ●

cataway, provides long-term case management for

its clients, if they need it (272). The center in ●

Piscataway also provides caregiver support groups

Sharon General Hospital in Sharon,

Altoona Hospital in Altoona,

Medical Center of Beaver County in Beaver,

Soldiers and Sailors Memorial Hospital in

Wellsboro,

Wilkes-Barre General Hospital, in WilkesBarre,
308 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

. Western Pennsylvania Hospital in Pittsburgh,

. Community Health Services in Quakertown,

● Hamot Medical Center in Erie,

. Franklin Regional Medical Center in Franklin,

. Divine Providence Hospital in Williamsport,

and

. Moses Taylor Hospital in Scranton (306).

At any of the 11 centers, a patient suspected of

having Alzheimer’s disease can get a comprehensive

evaluation by a multidisciplinary team that typically

consists of a psychiatrist, physician, clinical psychologist, social worker, and registered nurse (306).

The team submits its findings and a recommended

plan of care to the patient’s primary physician who

retains responsibility for the patient’s ongoing

medical care. If a patient has no primary care physician, the team’s social worker assists the patient in

obtaining one. The team’s physician may monitor a

patient for a short period of time (weeks to months)

to supervise the patient’s medications. The team’s

social worker educates family caregivers about

Alzheimer’s disease and related issues, trains caregivers to care for the patient, provides family

therapy, and refers families to Alzheimer’s support

groups and health care and social services in the

community.

The Pennsylvania legislature appropriated $500,000

in fiscal year 1985 for an Alzheimer’s disease

initiative. Included as 1 of the initiative’s 10

components was provision for technical assistance

by the Harrisburg Institute of Psychiatry for the

development of the Diagnostic and Evaluation

Centers for Alzheimer’s Disease (650). Now that the

11 centers are established, they are expected to

operate without State funding (364).

Who Is Served

The regional Alzheimer’s diagnostic and assessment centers in California, Florida, Illinois, New

Jersey, and Pennsylvania serve anyone suspected of

having Alzheimer’s disease or a related disorder.

Most clients are referred to the regional centers by

hospitals, primary care physicians, family members,

and community organizations, but some clients are

self-referred (222,349,364,522,227). The number of

people served by individual centers varies; Pennsylvania’s centers evaluate an average of three new

patients a month (364), whereas Illinois’ centers

evaluate an average of 30 patients a month (349).

Because dementing disorders are most prevalent

among elderly people, the majority of people served

by the centers are elderly, but they also serve

younger people.

Linking Functions

Information and Referral

1A, -.zlrz~irz~~~zz~ diagnostic and assessment centers

Jersey, and ‘Pennsylvania provide

I~1 their clients with information and

referrals to health care, long-term

care, social, and other services and have a social

worker on their multidisciplinary team to do this

(55,222,227,306,599). Some regional centers followup with a phone call or postcard to see whether their

clients obtained the services to which they were

referred (55). California’s centers are gathering data

now to determine whether their clients use the

services to which they are referred (334,460).

All of the Alzheimer’s diagnostic and assessment

centers in the five States are capable of providing

information and referrals for people other than their

own clients, but most of the centers do not consider

providing information and referrals to the general

public as one of their primary functions. The

exceptions are Illinois’ center in Springfield and

New Jersey’s center in Piscataway, each of which

operates an Alzheirner’s-specific information and

referral program with a toll-free number for the

general public (600,347).17

The centers in California, Florida, Illinois, New

Jersey, and Pennsylvania either have access to or are

currently developing comprehensive lists of community resources for Alzheimer’s patients and their

caregivers. California’s centers have a uniform data

system to compile information about their clients,

including information about the types of services the

clients use. This data system is compatible with that

of California’s regional resource centers for brainimpaired adults (225).18 New Jersey’s Institute for

1% c~ornia and Pennsylv~ agencies other than the regional Alzheimer’s diagnostic and assessment Centers me the p- SOmes of

Alzheimer-specflc information and referrals and operate statewide telephone information and referral programs.

18C~or~~~m@o~r60Wce ~ntm for~.~pfi~adults pattern~ ~terthe F@y s~iv~project aedis~ssed in the section ont.he Faxnily

Survival Project in this chapter and in the section on California’s linking programs in ch. 7.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .309

Alzheimer’s Disease and Related Disorders in Piscataway is developing a similar database (272).

Illinois’ Regional Alzheimer’s Disease Assistance Centers are in the process of developing a

catalog of service providers in each county of their

regions (349). In Pennsylvania, the Department of

Aging did a survey by county of hospitals, State

agencies, and community service providers, and the

survey results are being used to develop a database

of statewide services to be used by Pennsylvania’s

Diagnostic and Evaluation Centers for Alzheimer’s

Disease (616).

Case Management

M

All of the regional Alzheimer’s

I diagnostic and assessment centers

1 ~ ‘1

J [ provide their clients with a multidisciplinary assessment and develop a plan of care for them. The

extent to which regional centers

perform the other core functions of-case management (e.g., arrange and coordinate needed services,

monitor and evaluate the services delivered, and

reassess the client’s situation as the need arises)

varies greatly among individual centers. Moreover,

some regional centers limit their case management

activities to arranging medical services.

California’s Alzheimer’s Disease Diagnostic and

Treatment Centers typically do not arrange and

coordinate nonmedical services for their clients

unless a client or his/her family requires special

assistance (334). The center at St. Barnabas Senior

Center in Los Angeles is the exception to this rule;

it provides many of its clients with extensive case

management (225,227). The majority of St. Barnabas Senior Center’s clients are isolated, poor, elderly

people, many of whom have no family caregiver. St.

Barnabas’ five social workers select individuals

with dementia from the senior center’s clientele and

screen them for admission to the Alzheimer’s

Disease Diagnostic and Treatment Center’s program. Following a comprehensive assessment, the

social workers arrange and coordinate in-home and

other community services for the individuals. The

Alzheimer’s Disease Diagnostic and Treatment

Center also operates a home care program that

provides shopping, transportation, and companion

services for elderly dementia patients. St. Barnabas

Senior Center has a money management program,

which is available to individuals in the Alzheimer’s

Disease Diagnostic and Treatment Center’s program, and provides help in bill paying or acts as

power of attorney or conservator for individuals

incapable of managing their own funds (227).

Florida’s Memory Disorder Clinics develop a

plan of care and refer their clients to services in the

community, but they generally do not arrange the

services (222). Ongoing contact with a client is

limited to a formal medical reassessment every 6

months. The reassessment includes a follow-up family conference, where unmet needs can be identified

and referrals to appropriate services can be made.

Illinois’ two regional Alzheimer’s disease assistance centers use social workers and nurses to help

clients and their families arrange and coordinate

community services (55). The social workers and

nurses follow-up by postcard or phone call to see

that clients are satisfied with the services and

maintain at least monthly contact with patients who

require special attention. Clients receive semiannual

or annual medical reevaluations that include a

family conference where it can be determined

whether the client and family are receiving the

services they need.

New Jersey’s Institute for Alzheimer’s Disease

and Related Disorders in Piscataway offers ongoing

case management for all of its clients who need it

(272). New Jersey’s Alzheimer’s Evaluation Program in Stratford, which serves a predominately

rural southern part of the State where families must

travel a long distance to the center, refers its clients

to local agencies for case management.

Pennsylvania’s Regional Diagnostic and Evaluation Centers for Alzheimer’s Disease rely on a

patient’s primary physician to carry out the recommended plan of medical care. As noted earlier, if a

patient has no primary physician, the center’s social

worker assists the patient in obtaining one. The

center’s social worker also refers patients and their

families who need social services to agencies in the

community, but the social workers rely on the

community agencies to provide extended case management for patients and their families who need it.

Public Education

~

To inform the public about the

I&l availability of their services, the

five States’ regional Alzheimer’s

diagnostic and assessment centers

distribute written materials about

dementia and the services they offer
310 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

for people with Alzheimer’s disease and their

caregivers. The staff of some of the centers also

participate in community meetings and other public

forums to educate people about dementia and about

potentially helpful services for people with

dementia.

Outreach

H

Most regional Alzheimer’s diagnostic and assessment centers do

————-— not have outreach procedures to

p

identify people with dementia who

— need assistance but are unlikely to — contact a center on their own or to

be referred. At least some of the centers do serve

people with dementia who live alone and have no

family caregiver, however. In the period from June

1985 to June 1987,22 percent of the 452 people with

dementia who were seen by California’s Alzheimer’s Disease Diagnostic and Treatment Centers

lived alone, and 10 percent had no caregiver (227).

Of those seen by the center at St. Barnabas Senior

Center, 80 percent lived alone, and more than 20

percent had no caregiver. Individuals who live alone

and have no caregiver may be referred to an

Alzheimer’s diagnostic and assessment center by a

physician, another health care or social service professional, a community agency, or another source.

Some regional Alzheimer’s diagnostic and assessment centers have mobile assessment units to

reach patients who live in remote areas. New

Jersey’s Alzheimer’s Evaluation Program in Stratford operates a mobile assessment van that travels

throughout the predominately rural southern part of

the State to minimize transportation difficulties for

the families of Alzheimer’s patients. Likewise, one

of the regional Alzheimer’s Diagnostic and Evaluation Centers in Pennsylvania has developed a

“Project Concern” program in which health care

professionals travel in a specially equipped mobile

van to rural areas of the State to provide health

education and diagnostic screening tests. California’s Alzheimer’s Disease Diagnostic and Treatment Centers are developing mobile geriatric assessment units to reach patients living in remote areas of

the State.

Role in Allocating Services and Funding

The regional Alzheimer’s diagnostic and assessment centers in California, Florida, Illinois, New

Jersey, and Pennsylvania do not control access to

services or funding for services other than those they

provide.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, regional Alzheimer’s diagnostic and assessment centers offer the following advantages:

●

●

●

●

●

●

●

Regional Alzheimer’s diagnostic and assessment centers have a multidisciplinary staff that

includes professionals who are specifically

knowledgeable about dementia.

Regional Alzheimer’s diagnostic and assessment centers provide individuals suspected of

having Alzheimer’s disease a comprehensive

evaluation that may reveal a treatable cause for

their dementia or other treatable conditions that

are exacerbating their dementia and reducing

their functional ability.

Regional Alzheimer’s diagnostic and assessment centers provide comprehensive assessments that may help match individuals with

appropriate services.

Regional Alzheimer’s diagnostic and assessment centers provide their clients with referrals

to community services, and some centers function as formal sources of Alzheimer-specific

information and referrals for the general public.

Some regional Alzheimer’s diagnostic and

assessment centers provide short-term case

management to arrange and coordinate services

for their clients, and a few centers provide

extended case management.

Since regional Alzheimer’s diagnostic and

assessment centers provide diagnosis, they are

the first point at which some people with

dementia and their families come in contact

with the so-called service system; as such, the

centers help these patients and their families

identify appropriate services relatively early in

the patient’s disease. Similarly, since many of

the centers reevaluate patients at regular intervals, they can be sites for intermittent referrals

and assistance in arranging services for patients

and families.

Regional Alzheimer’s diagnostic and assessment centers are already established in some

States.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 311

Despite these advantages, designating regional

Alzheimer’s diagnostic and assessment centers as

the basis of a national system for linking people with

dementia to services would have several drawbacks.

One obvious drawback is that most States do not

have such centers. A second drawback is that most

of the existing centers do not consider providing

information and referrals to the general public as one

of their primary functions. Furthermore, although all

the centers refer their clients to services, many of

them do not follow-up to make sure that the clients

obtain the services.

At least some regional Alzheimer’s diagnostic

and assessment centers have clients who live alone

and have no family member or other informal

caregiver. On the other hand, most of the existing

centers do not have outreach procedures to identify

people with dementia who are unable to seek help on

their own and have no one to help them. Likewise,

most of the existing centers do not provide the

extended case management that may be needed to

arrange, coordinate, and monitor services for such

people. If regional Alzheimer’s diagnostic and

assessment centers were designated to constitute a

national linking system for people with dementia,

most of the existing centers would have to expand

their information and referral, case management,

and outreach programs significantly.

Finally, it should be noted that some families of

individuals with dementia do not think of the

individual as a “person with dementia;” this is

probably especially likely if the individual has

physical impairments in addition to his or her

dementia. These families are unlikely to contact a

regional Alzheimer’s diagnostic and assessment

center for help. Likewise, people who perceive a

stigma associated with a diagnosis of Alzheimer’s

disease may be unwilling to contact a regional

Alzheimer’s diagnostic and assessment center.

HOSPITAL-BASED GERIATRIC

ASSESSMENT PROGRAMS

Hospital-based geriatric assessment programs are

special hospital programs that use a multidisciplinary team to evaluate elderly patients with complicated medical or psychiatric problems and to develop a coordinated plan of care (848). Although

hospital-based geriatric assessment programs differ

from one another, they are all designed to provide a

comprehensive assessment of a patient’s physical,

mental, emotional, behavioral, functional, social,

and financial status and to identify both problems

and strengths of the patient (723). Some hospitalbased geriatric assessment programs also provide

medical and psychiatric treatment and rehabilitative

services, and many link their patients to other

services in the community. A nationwide survey of

nearly 7,000 hospitals conducted in 1987 by the

American Hospital Association found that about

1,400 hospitals had a geriatric assessment program

(532).

OTA has included hospital-based geriatric assessment programs in its analysis of agencies that might

constitute a national system to link people with

dementia to services for two reasons. The most

important reason is that these programs provide

comprehensive, multidimensional patient assessments that can improve diagnostic accuracy, identify

potentially treatable diseases and conditions, and

help to define a patient’s service needs. As noted in

the previous section, many diseases that cause

dementia cannot be cured at present, but some can be

cured or ameliorated if they are diagnosed accurately

and treated correctly. Identifying these curable

diseases is the first step in caring for people with

dementia. Individuals who have dementing diseases

that are not curable still may have other treatable

illnesses and conditions that exacerbate their dementia and make them less able to function independently and more difficult for their families and others

to manage. If these illnesses and conditions are

detected and treated effectively, an individual’s

overall functioning may improve, and his or her

service needs may be reduced. Lastly, even if an

individual has an incurable dementing disease and

no treatable illnesses or conditions that are exacerbating his or her dementia, a comprehensive, multidimensional assessment provides information that is

needed to match the individual with appropriate

services.

The second reason that OTA has included hospitalbased geriatric assessment programs in its analysis

of agencies that might constitute a national system

to link people with dementia to services is that the

programs are associated with hospitals. Hospitals

exist inmost communities. Many people are familiar

with hospitals and accustomed to relying on hospitals for help with medical problems (89). Moreover,

hospitals are available on a round-the-clock basis, 7

days a week, and they are usually centrally located

and accessible by public transportation. Not all
312 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

hospitals have a geriatric assessment program, but it

is likely that if reimbursement were available

through Medicare or other funding sources, many

more hospitals would establish such programs.

Overview of the Agencies

Hospital-based geriatric assessment programs include both inpatient and outpatient programs. The

inpatient programs typically provide more intensive

evaluation and treatment and serve elderly patients

with illnesses that necessitate hospitalization (726).

The outpatient programs typically serve elderly

patients who do not need hospitalization or inpatient

testing and who can be evaluated and treated on an

outpatient basis.

Both inpatient and outpatient geriatric assessment

programs use multidisciplinary teams to perform

comprehensive patient assessments. The teams typically include a physician, a nurse, and a social

worker, and, if not included on the core team, a wide

variety of other health care professionals (e.g.,

psychiatrists, psychologists, dietitians, pharmacists,

occupational therapists, and physical therapists)

who are available for consultation (272,394,907).

Although the size and composition of geriatric

assessment teams vary, the teams typically have

staff who are knowledgeable about dementia

(12,701,726,907).

Rubenstein has identified four major types of

inpatient and outpatient hospital-based geriatric

assessment programs:

● inpatient geriatric specialty units,

● inpatient geriatric consultation services,

. outpatient geriatric services, and

. inpatient and outpatient geropsychiatry services (723).

Inpatient geriatric specialty units are the most

common type of geriatric assessment program (723).

They generally offer hospitalized patients a comprehensive assessment by a multidisciplinary team, a

comprehensive plan of care, treatment, and recommendations for care following hospital discharge.

Inpatient geriatric specialty units are of three main

kinds: 1) subacute geriatric assessment units, 2)

geriatric rehabilitation units, and 3) specialemphasis acute care units. The frost kind, subacute

geriatric assessment units, typically provide subacute treatment and rehabilitation for a carefully

targeted group of frail elderly patients (723). Most

subacute geriatric assessment units are part of the

Veterans Administration (VA) system, which, as of

1989, had 87 such units (917). A subacute geriatric

assessment unit at the VA medical center in Sepulveda, CA, is described in box 8-K.

The second kind of inpatient geriatric specialty

unit-geriatric rehabilitation units-provide intensive rehabilitative services to hospitalized patients

(723). Some units of this type exclude people with

dementia on the grounds that they are incapable of

benefiting from rehabilitative services (35).

The third kind of inpatient geriatric specialty unit

(special-emphasis acute care units) are acute care

hospital wards that specialize in treating certain

physical and mental problems that are common in

elderly people (723). Such units have a multidisciplinary team trained to identify and treat these

problems.

The second major type of hospital-based geriatric

assessment program, inpatient geriatric consultation services, consist of freestanding teams of health

care professionals who visit hospitalized patients

and perform comprehensive assessments to identify

the patients’ medical and psychiatric impairments

(328,455,723). Staffing patterns of inpatient geriatric consultation teams reflect the goals and the

resources of the hospital in which the team functions; most have physicians (house staff and/or

faculty geriatricians), nurses, and social workers, but

they usually do not have all the disciplines represented on the staff of an inpatient geriatric specialty

unit (723,914). Ordinarily, an assessment by a

geriatric consultation team is performed at the

request of a patient’s primary physician (328,

723,914). The consultation team makes recommendations and works with the primary physician and

other hospital staff to implement the recommendations, but the team has no control over patient

management, nursing, or rehabilitative services

(107,914).

The third major type of hospital-based geriatric

assessment program, outpatient geriatric services,

are hospital-affiliated clinics that use a multidisciplinary team to provide a comprehensive assessment to

elderly people who come or are referred to the clinic

(723). Some outpatient geriatric services also provide other services, depending on their staff’s

expertise and the needs of their clientele. An

outpatient geriatric clinic associated with a hospital

in Rochester, New York, is described in box 8-L.
Chapter 8-Agencies That Might Constitute a Uniform National Linking System ● 313

Box 8-K—An Inpatient Subacute Geriatric Assessment Unit: The Geriatric Evaluation Unit at the

Sepulveda VA Medical Center in Sepulveda, California

In June 1979, the VA Medical Center in Sepulveda, California, opened an inpatient Geriatric Evaluation Unit

with 15 beds on a 29-bed subacute care hospital ward. The unit is staffed full time by a multidisciplinary team

consisting of a faculty geriatrician, a physician’s assistant, a geriatric fellow, a medical intern, and geriatric nurses;

part-time staff include a social worker, psychologist, dietitian, pharmacist, occupational therapist, and physical

therapist.

The Geriatric Evaluation Unit’s goals are to provide elderly patients with:

1. a comprehensive assessment by a multidisciplinary team;

2. short-term, goal-oriented therapy and rehabilitation; and

3, arrangements for follow-up care after hospital discharge.

Patients are admitted to the Geriatric Evaluation Unit from an acute inpatient ward or from the outpatient

department of the Sepulveda VA Medical Center. To be eligible for admission to the unit, patients must be over

age 65 and have medical, functional, or psychosocial problems that interfere with living at home. Patients are denied

admission to the unit if they are in the terminal phase of a disease (e.g., cancer), require acute care, or have end-stage

dementia and no social support system to prevent their placement in a nursing home.

The focus of the first week of a patient’s stay in the Geriatric Evaluation Unit is typically on assessing the

patient needs and planning treatment. The focus of the subsequent 3 or 4 weeks is usually on providing treatment

and rehabilitation. Taking into account the nature and extent of the patient’s therapeutic progress, the

multidisciplinary team develops a plan for the medical care of the patient following discharge from the hospital.

Patients who have been discharged are eligible to be seen regularly in the geriatric followup clinic, usually by the

same physician or physician’s assistant who cared for them on the Geriatric Evaluation Unit.

SOURCE: L.Z. Rubenstein, K. Josephson, G.D. Wieland, et al., “Geriatric Assessment on a Subacute Hospital Ward” Clinics in Geriatric

Medicine, L.Z. Rubenstein, L.J. Campbell, and R.L. Kane (eds.) (Philadelphia, PA: W.B. Saunders Co., 1987).

Patients of outpatient geriatric services are gener- psychotherapeutic, and behavioral interventions in a

ally self-referred or referred by family members, hospital setting where the patient’s physical and

community agencies, or physicians (549,907). Patients who are referred by their primary physician

typically remain under the direct care of the physician. Some observers have noted that physicians are

more likely to refer patients to outpatient geriatric

services for psychosocial problems than for medical

problems (549,909). These observers stress that

geriatric assessment includes the evaluation of both

medical and psychosocial problems and that there is

a need to educate physicians to this effect (549,909).

The fourth major type of hospital-based geriatric

assessment program, geropsychiatry services, exist

specifically to serve elderly people with psychiatric

problems. Geropsychiatry services are found in both

inpatient and outpatient settings. An outpatient

geropsychiatric clinic that serves elderly people in

Seattle, Washington, is described in box 8-M.

Inpatient and outpatient geropsychiatry services

provide elderly people with a comprehensive assessment by a multidisciplinary team that usually

includes a psychiatrist and may include a psychologist (12,706). Inpatient units offer pharmacologic,

mental condition can be closely monitored. The

professionals on the multidisciplinary team usually

participate actively in discharge planning for the

patients they evaluate. Outpatient geropsychiatric

clinics typically provide their clients with a comprehensive, multidimensional assessment and case

management and link the clients and their caregivers

to community services (706).

The costs of a hospital-based geriatric assessment

vary, depending in part on the setting and composition of the assessment team. The average cost of an

assessment is often much less in an outpatient

program than an inpatient program (703,910). The

inclusion of psychiatrists or other specialists as core

members of an outpatient geriatric assessment team

raises the cost of some outpatient programs, however (493,703).

The costs of a hospital-based inpatient or outpatient geriatric assessment per se are not covered by

most third-party payers (379,722). Typically, Medicare, Medicaid, and private insurers cover physicians’ services and lab tests associated with diagno-
314 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-L--An Outpatient Geriatric Service: The Geriatric Ambulatory Consultation Service at

Monroe Community Hospital in Rochester, New York

The Geriatric Ambulatory Consultation Service affiliated with Monroe Community Hospital in Rochester,

New York, is an outpatient clinic that provides comprehensive geriatric assessments, About one-third of the 131

elderly patients who received geriatric evaluations at the clinic between May 1983 and April 1984, had a dementing

illness.

When someone calls the Geriatric Ambulatory Consultation Service, he or she is interviewed on the phone by

a specially trained registered nurse. The nurse determines how urgent the situation is and what consultative expertise

is necessary to address the problem and then arranges the necessary clinic appointments. The nurse is familiar with

services provided by other professionals and agencies in the community and, in some cases, refers callers to these

services.

At the initial clinic visit, a patient receives either a simple geriatric assessment or a full-team comprehensive

assessment. Members of the multidisciplinary consultation team include a physician, a nurse, and asocial worker.

A psychiatrist is available two times a week to assess patients with psychiatric or behavioral problems. After the

initial evaluation, the team may call on additional health care specialists for consultations, if needed.

After each clinic session, the members of the consultation team hold a conference to discuss each new patient.

A plan of care is developed to meet the needs of each patient and the patient’s family. The consultation team’s social

worker often contacts community agencies to arrange services for the patient or the patient’s family and, when

necessary, accompanies the family to case conferences with community agencies to discuss the patient and family’s

needs.

Followup visits at the clinic are scheduled as necessary to complete additional diagnostic procedures, to

reevaluate the plan of care, and to review the patient progress. Most patients require four followup visits.

Conferences are often held with family members to refine and modify the plan of care. Home visits are provided

to individuals who require such visits because of the complexity of their health care needs or questions about their

home environment.

SOURCES: M-E. Williams, “Outpatient Geriatric Evaluation” Clinics in Geriatric Medicine, L.Z. Rubenstein, L.J. Campbell, and R.L. Kane

(eds.) (Philadelphia, PA: W.B. Saunders Co., 1987); M.E. Williams and T.F. Williams, “Evaluation of Older Persons in the

Ambulatory Setting,” Journal of the American Geriatrics Society 34(1):37-43, 1986.

sis, but do not cover the services provided by premature or inappropriate institutionalization (394,

nonphysician professionals (e.g., nurses and social

workers) involved in the assessment process

(493,701,703,722). Whatever costs are not covered

by insurance are borne either by the patient or by the

hospital with which the geriatric assessment program is affiliated (379,493).

Hospital-based geriatric assessment programs of

various types are an established part of the health

care systems of several countries (e.g., Great Britain,

Sweden, and Israel) (722). Although such programs

have been developing in the United States for the

past 15 years, growth in the number of geriatric

assessment programs has been slower here than in

countries that have a national health care system to

coordinate their financing and development (722).

Who Is Served

Geriatric assessment programs generally target

elderly people with potentially remediable medical

or psychiatric problems who may be at risk of

848). One commentator estimates that these “atrisk’ elderly people constitute between 5 and 10

percent of hospitalized elderly patients and an

undetermined percentage (perhaps 2 to 5 percent) of

unhospitalized elderly people (722).

Some hospital-based geriatric assessment programs accept only elderly people who are considered

to be at risk of nursing home placement (727). Other

programs accept people primarily with psychiatric

problems. Some programs exclude elderly people

with acute illnesses; some exclude elderly people

who are terminally or chronically ill (726); and some

exclude people who are disruptive or who do not

have the potential to be rehabilitated (35,726).

Very little information is available about the

number of people with dementia who are served by

geriatric assessment programs, but some types of

geriatric assessment programs appear to be more

likely than other types to serve people with demen-
Chapter 8--Agencies That Might Constitute a Uniform National L inking System ● 315

Box 8-M—An Outpatient Geropsychiatric Clinic: The Geriatric and Family Services Clinic at the

University of Washington Hospital in Seattle, Washington

The Geriatric and Family Services Clinic, located at the University of Washington Hospital Medicine Clinic,

is an outpatient clinic that provides psychiatric, medical, and social evaluation of mentally impaired older persons,

recommends appropriate treatment for them, and provides support and practical advice to their families. The

evaluation generally entails a minimum of three, but typically four, visits to the clinic.

At the initial clinic visit ,a psychiatrist or psychologist meets with the patient and family members (separately

and together) to observe family dynamics, obtain the patient psychiatric history, and formulate a diagnosis; a nurse

and/or occupational therapist assesses the patient’s day-today functioning and suggests ways to strengthen the

patient’s capabilities. At subsequent clinic visits, an internist or family physician examines the patient to identify

and treat reversible causes of dementia, and, when needed, a psychologist administers additional tests to assess the

patient’s memory and intellectual functioning. Infeasible, a social worker makes a home visit to gather information

on the patient’s home environment, family, etc. An architect may accompany the social worker on the home visit

to inspect the patient’s home and suggest physical changes to help the patient function better at home.

Following the elderly patient’s visits to the clinic and the home visit, the multidisciplinary team holds a

conference to consolidate findings and develop recommendations in 11 specified areas:

. housing and living situation,

. food and nutrition,

● self care,

● physical health,

. household tasks,

● emotional and mental factors,

● financial matters,

● transportation,

● day-to-day routine,

● family stress caused by a patient, and

* patient’s interference with family members’ work or other activities.

Using the notes from this conference, the staff prepares treatment recommendations and discusses them with

the patient and the patient’s family. The suggestions may include strategies such as starting medication; stopping

medication; counseling for the patient, family, or both; use of community resources; behavior modification; and

environmental manipulation. The clinic provides followup medical treatment as needed. The multidisciplinary team

attempts to coordinate care with the patient primary physician and other health care and social service

professionals. Generally, one-quarter to one-half of the patients receive ongoing medical case management from

the clinic.

At least four times a year, the clinic offers families of patients structured group sessions, at which members

of the multidisciplinary team discuss various aspects of mental impairment, and families are given the opportunity

to express feelings and discuss caregiving problems. The multidisciplinary team is also available for 10- to

15-minute telephone consultations whenever the family needs practical advice or help in warding off a crisis.

SOURCE: B. V. Reifler, E.B. Larson, and L. Teri, “An Outpatient Geriatric Psychiatry Assessment and Treatment Service, ” Clinics in Geriatric

Medicine, L.Z. Rubenstein, L.J. Campbell, and R.L. Kane (eds.) (Philadelphia, PA: W.B. Saunders Co., 1987).

tia. Of the three kinds of inpatient geriatric specialty however, the team can evaluate only those patients

units, subacute geriatric assessment units probably

serve the most patients with dementia. Some of these

units do not serve people with severe dementia,

however (394).

Inpatient geriatric consultation teams can visit

elderly patients on acute medical, surgical, and

psychiatric wards throughout a hospital and so have

the potential to reach large numbers of hospitalized

patients who may have dementia. As consultants,

referred to them by a patient’s primary physician

(328,723,914). In some cases, differences of opinion

about what type of patient will benefit from geriatric

assessment or “turf” issues may prevent some

patients, including those suspected of having dementia, from receiving an assessment (914).

Information from several sources indicates that

many of the clients of outpatient geriatric services

are elderly people with dementia (272,493,909).

89-150 - 90 - 1 1
316 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

About one-third of the 1,373 elderly people who

received assessments from New Jersey’s eight

geriatric assessment centers from January 1987 to

June 1989 had a diagnosis of Alzheimer’s disease or

a related disorder (272). Likewise, one-third of the

131 elderly people who received assessments from

May 1983 to April 1984 at the Geriatric Ambulatory

Consultation Service in Rochester, New York, had

a dementing disease (909) (see box 8-L).

Elderly people with dementia also constitute a

significant proportion of the clients of many inpatient and outpatient geropsychiatry services (12,

493,705). The Geriatric and Family Services Clinic

in Seattle, Washington (described in box 8-M)

generally evaluates about 250 elderly people with

dementia a year (706).

Linking Functions

Information and Referral

t 9 The primary functions of all hospital14based geriatric assessment programs

are to provide elderly people with a

comprehensive multidimensional assessment and to develop an appro-

~ priate plan of care. When discussing

a patient’s plan of care with the patient and his or her

family or other informal caregiver, the staff of

geriatric assessment programs usually provide information about community services and referrals to

specific service providers. In some cases, this occurs

only once, however, immediately following the

patient’s assessment. The referrals provided by

many inpatient geriatric assessment programs pertain primarily to a patient’s medical needs (723), and

some inpatient geriatric assessment programs refer

their patients to other information and referral

sources in the community for referrals to social and

other nonmedical services (724). In contrast, most

outpatient geriatric assessment programs provide

their patients with referrals to a range of medical and

nonmedical services (703, 909).

Although all hospital-based geriatric assessment

programs provide their patients with information

and referrals to at least some types of community

services, most programs are unequipped to provide

the general public with information and referrals to

community services. Although no definitive data are

available, information from several sources suggests

that many geriatric assessment programs do not

maintain a comprehensive list of community resources for use in referrals (379,699,724).

Case Management

Case management includes five

core functions: assessing a client’s

needs, developing a plan of care,

arranging and coordinating services, monitoring and evaluating the

services delivered, and reassessing

the client’s situation as the need arises. The extent to

which hospital-based geriatric assessment programs

perform functions that go beyond assessing a

client’s needs and developing a plan of care varies.

One commentator has noted that many inpatient

geriatric assessment programs have limited knowledge about nonmedical community services and do

not emphasize coordinating such services for their

patients or providing followup (746). Outpatient

geriatric assessment programs tend to have a closer

working relationship with community service providers and are more likely than inpatient programs to

arrange and coordinate community services for their

patients and to provide followup (493, 549,722,907).

Some outpatient geriatric assessment programs provide only limited followup after patients are initially

linked to services, however (907).

Participants in the 1987 Geriatric Assessment

Consensus Development Conference sponsored by

the National Institutes of Health agreed that successful implementation of a comprehensive plan of care

for an elderly person depends on the availability of

case management to link the person to needed

services (848). Many participants in the conference

recommended that geriatric assessment programs

place more emphasis on providing case management. Likewise, some commentators have recommended that all geriatric assessment programs

should take a more active role in coordinating social

and other nonmedical services for their patients

(108,722,907).

Public Education

u

Some hospital-based geriatric assessment programs distribute bro-

-—————— chures and sponsor meetings and —

@

other community forums to inform

— the public about their services (272). — Geriatric assessment programs generally do not provide public education about dementia or about services other than their own for people
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .317

with dementia. Frequently, however, members of

geriatric assessment teams give speeches or publish

articles that explain the potential value of comprehensive geriatric assessment in accurately diagnosing a patient’s medical and psychiatric condition and

in developing an appropriate plan of care.

outreach

~

Hospital-based geriatric assessIM ment programs do not routinely

engage in outreach to identify potential clients (724). Typically, they

deal only with patients who are

referred to them. The programs

sometimes serve patients without families who are

referred by a physician, another hospital staff

member, or a community agency such as Adult

Protective Services.

Role in Allocating Services and Funding

Hospital-based geriatric assessment programs do

not control access to, or finding for, services other

than those they provide.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, hospital-based geriatric assessment programs offer the following advantages:

●

●

●

Hospital-based geriatric assessment programs

provide elderly people with a comprehensive

multidimensional assessment that may reveal a

treatable cause for their dementia or other

treatable diseases and conditions that are exacerbating their dementia and reducing their

fictional ability.

Hospital-based geriatric assessment programs

provide elderly people with a comprehensive

multidimensional assessment that may help

match individuals with appropriate services.

Hospital-based geriatric assessment programs

typically have staff who are knowledgeable

about dementia.

Despite these advantages, designating hospitalbased geriatric assessment programs as the basis of

a national system to link people with dementia to

services would have several drawbacks. One drawback is that hospital-based geriatric assessment

programs generally are not equipped to provide

information and referrals to the general public. To do

so would require a major redirection of their efforts

and resources. A second drawback is that hospitalbased geriatric assessment programs generally do

not provide outreach to identify people with dementia who would benefit from their services but are

unlikely to contact a geriatric assessment program

on their own or be referred to the program. A third

drawback is that although some hospital-based

geriatric assessment programs link their patients to

all kinds of community services, inpatient geriatric

assessment programs, in particular, often refer their

patients primarily to medical services and do not

emphasize referrals to or coordination of social and

other nonmedical services.

There are several other possible drawbacks to

designating hospital-based geriatric assessment programs as the basis of a national system to link people

with dementia to services. One of these is that some

hospital-based geriatric assessment programs focus

primarily on the needs of patients and pay less

attention to the needs of family caregivers. Another

is that geriatric assessment programs are intended to

serve people who want or are willing to accept a

comprehensive assessment by a multidisciplinary

team; by design, therefore, they may exclude people

who do not want or are unwilling to accept a

comprehensive assessment. It is unclear how many,

if any, people with dementia or their caregivers

would be unwilling to accept such an assessment.

Lastly, hospital-based geriatric assessment programs are more expensive than some of the other

categories of agencies discussed in this chapter. On

the other hand, to the extent that hospital-based

geriatric assessment programs can identify and treat

diseases and conditions that exacerbate patients’

dementia and thus help them to function more

independently, these programs can decrease the

patients’ service needs and thus reduce the overall

cost of their care to all payers.

Whether the association of geriatric assessment

programs with hospitals is primarily an advantage or

a drawback to designating such programs as the

basis of a national linking system for people with

dementia is unclear. Certainly, many people are

comfortable with hospitals as settings for medical

care. On the other hand, the patient assessment and

care planning provided by hospital-based geriatric

assessment programs, particularly inpatient programs, sometimes focuses too greatly on the medical

aspects of a person’s condition and on referrals to
318 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

medical services to the exclusion of nonmedical

problems and referrals to social and other supportive

services.

If hospital-based geriatric assessment programs

were designated as the basis of a national system to

link people with dementia to services, the programs

would have to place more emphasis on coordinating

a range of services for their patients. Since outpatient

programs tend to do this and are also less expensive

than inpatient programs, outpatient programs would

generally be more appropriate than inpatient programs as settings for a national linking system.

Clearly, however, inpatient programs would be

needed for some people with dementia.

HOME HEALTH AGENCIES

Home health agencies are local organizations that

provide in-home health care and health-related

services that may include any of the following:

●

●

●

●

●

●

●

skilled nursing services;

physical, occupational, and speech therapy;

social work services;

homemaker, home health aide, companion, and

chore services;

respite care;

nutritional services; and

in-home hospice care.

Some people use the term “home health agency”

narrowly to include only agencies that provide the

more medically oriented in-home services (e.g.,

skilled nursing services and physical therapy). As

used in this report, however, the term refers to

agencies that provide any of the in-home services

listed above. According to the National Association

for Home Care, in 1989, there were about 12,800

home health agencies in the United States-a figure

that includes both Medicare-certified home health

agencies and other agencies that provide in-home

services but are not Medicare-certitfied (337).

OTA is including home health agencies in its

analysis of agencies that might constitute a national

system to link people with dementia to services for

several reasons. First, case management is an

integral component of the care provided by home

health agencies for many of their clients. Second, at

least two States, Illinois and New York, are using

home health agencies to provide case management

for a State-funded, long-term care program. Third,

home health agencies are a major player in the

delivery of health care and long-term care services

in this country. Lastly, home health agencies provide

many of the services that maybe needed for a person

with dementia.

Overview of the Agencies

Home health agencies include many different

types of public and private organizations. The public

organizations typically are units of State, county, or

other local government departments of health or

public health. The private organizations include

both for-profit and nonprofit agencies. Some home

health agencies are independent entities; some are

operated by another organization, such as a hospital;

and some are part of a multiagency chain (224,773).

Some home health agencies of each of the

above-mentioned types are Medicare-certified: that

is, they meet the Federal requirements for participation in the Medicare program, including a requirement that they provide skilled nursing services. As

of April 1989, 5,681 home health agencies were

Medicare-certified (337). Other home health agencies of each of the above-mentioned types are not

Medicare-certified, either because they do not meet

the requirements for participation in the Medicare

program or because they choose not to participate in

the program. No precise data are available on the

number of home health agencies that are not

Medicare-certified, but the National Association for

Home Care has estimated that in 1989, more than

7,100 home health agencies (55 percent of all home

health agencies) were not Medicare-certified (337).

Only Medicare-certified home health agencies can

receive Medicare reimbursement for home health

services.

The Federal Government collects many different

kinds of information in connection with the certification of home health agencies for Medicare and the

payment of Medicare home health claims. Thus, as

illustrated in the following discussion, much more is

known about Medicare-certified home health agencies than about non-Medicare-certified home health

agencies (224,340).

The proportion of home health agencies that are

Medicare-certified varies among States. In 1987, for

example, 85 percent of the 194 home health agencies

in Arkansas were Medicare-certified, compared to

only 21 percent of the 821 home health agencies in

New York (340,570).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 319

Table 8-2-Services Provided by Medicare-certified Home Health Agencies, 1986,

N = 5922

Percentage of agencies that

Percentage of agencies that provide the service

Service provide the service using agency staff

Nursing services . . . . . . . . . . . . . . . . . . . . . . . . . 100% 99 %

Home health aide or homemaker . . . . . . . . . . . 97 88

Physical therapy . . . . . . . . . . . . . . . . . . . . . . . . . 89 53

Speech therapy . . . . . . . . . . . . . . . . . . . . . . . . . . 61 37

Medical social work services . . . . . . . . . . . . . . . 45

Occupational therapy . . . . . . . . . . . . . . . . . . . . . 59 32

Nutritional guidance . . . . . . . . . . . . . . . . . . . . . . 28 21

Medical appliances or equipment . . . . . . . . . . . 21 9

Pharmaceutical services . . . . . . . . . . . . . . . . . . 10 5

Physicians’ services . . . . . . . . . . . . . . . . . . . . . . 1 0.8

SOURCES: Foundation for Hospice and Home Care, Basic Home Care Statistics: The Industry 1988, Washington DC,

1988; S.L. Hughes, Center for Health Services and Policy Research, Northwestern University, Evanston,

Illinois, “Home Care: Where We Are and Where We Need To Go,” draft prepared for the National Institute

on Aging In-Home Community and Supportive Services Advisory Group, Bethesda, MD, Apr. 19, 1990.

As of April 1989, 18 percent of the Medicarecertified home health agencies were public agencies;

32 percent were private, for-profit agencies; 13

percent were private, nonprofit agencies; 9 percent

were visiting nurse associations (VNAs); 26 percent

were hospital-based agencies; and the remaining 2

percent were nursing home or rehabilitation-based

agencies or agencies under combined auspices

(337). No similar information is available about

non-Medicare-certified home health agencies.

Medicare-certified home health agencies are permitted to provide in-home services directly-i. e.,

using the agency’s staff, or through contracts with

other providers. Data on the services provided by

Medicare-certified home health agencies in 1986

show that all or the great majority of these agencies

were providing nursing, home health aide, and

homemaker services and were using agency staff to

provide these services (see table 8-2). Fewer agencies were providing other types of in-home services,

and the agencies that were providing the other types

of services were more likely to be using contractors

to provide them (224,340). No similar data are

available on the services provided by non-Medicarecertified home health agencies.

Home health agencies generally employ registered nurses, licensed practical nurses, home health

aides, homemakers, and social workers (224). Some

home health agencies also employ physical therapists, speech therapists, occupational therapists, and

a variety of other service providers, whereas other

home health agencies contract with these types of

service providers (224,822). A 1987 analysis of the

employment patterns in Medicare-certified home

health agencies indicates that the average home

health agency employed 7 registered nurses and 5

home health aides (337). Again, no similar figures

are available for non-Medicare-certified home

health agencies.

Home health agencies are licensed by some States

and territories, but not by others. OTA’s tabulation

of the results of a survey by the National Association

for Home Care (571) shows that, as of March 1989,

35 States and territories licensed Medicare-certified

home health agencies, and 30 States and territories

licensed non-Medicare-certified home health agencies.

The number of home health agencies increased

greatly in the past 25 years, from an estimated 1,200

agencies in 1965 to more than 12,800 in 1989

(224,337). The number of Medicare-certified home

health agencies increased from 1,753 in 1967 (the

second year in which there was Medicare certification for home health agencies) to more than 6,000 in

1986, and then decreased to 5,681 by April 1989

(224,337,773). OTA is not aware of any data on the

number of non-Medicare-certified agencies in the

late 1960s, but recent estimates suggest that in the

past few years, the number of non-Medicare-certified agencies continued to increase, even though

the number of Medicare-certified agencies dropped

somewhat.

The predominant types of home health agencies

also changed over time. In 1967, 37 percent of all

Medicare-certified home health agencies were VNAs,

and 54 percent were public agencies (224). By 1972,
320 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

a smaller percentage of Medicare-certified home

health agencies (24 percent) were VNAs, but public

agencies still constituted more than half (57 percent)

of all such agencies (773). By 1989, however, only

9 percent of all Medicare-certified home health

agencies were VNAs, and only 18 percent were

public agencies (337).

As the proportion of VNAs and public agencies

decreased, the proportion of other types of home

health agencies increased. During the 1970s, private,

nonprofit agencies were the fastest growing type of

Medicare-certified home health agency, increasing

from less than 1 percent of all such agencies in 1972

to 14 percent in 1982 (773). From 1982 to 1986,

private, for-profit home health agencies were the

fastest growing type of Medicare-certified home

health agency, increasing from 17 percent of all

Medicare-certified home health agencies in 1982 to

32 percent of all such agencies in 1986 (453,773)19

.

For the past few years, hospital-based home health

agencies have been increasing faster than any other

type of Medicare-certified home health agency

(453,773).20

No information is available about the proportion

of various types of home health agencies among

non-Medicare-certified agencies, but the National

Association for Home Care believes that for-profit

agencies that serve only private pay clients are

increasing (224). Durable medical equipment supply

agencies, which are not usually classified as home

health agencies even though they provide in-home

medical therapies (e.g., mechanical ventilation, IV

antibiotics, and chemotherapy) are also increasing

(773).

In-home services are paid for by Medicare,

Medicaid, other Federal, State, and local government health care and long-term care programs,

patients, patients’ families, charitable organizations,

and other sources (469,81 1,821). Many private

insurers pay for in-home services, and at least 17

States require private insurers to include home

health benefits in their plans (773). As of May 1989,

73 of the 90 Blue Cross and Blue Shield plans

offered home health benefits (401).

Medicare is the largest third-party payer for home

health care. As noted earlier, Medicare pays only for

in-home services that are provided or contracted for

by Medicare-certified home health agencies. Medicare expenditures for in-home services for 1989

were estimated to be $2.9 billion (3 percent of total

Medicare expenditures) (337,837). Data for fiscal

year 1984 show that Medicare payments accounted

for almost three-quarters of the revenues of Medicarecertified home health agencies in that year (224), but

anecdotal evidence suggests that proportion may

have decreased since then.

Non-Medicare certified home health agencies

receive funds from all the sources listed above,

except Medicare. OTA is not aware of any information about the proportion of funds from various

sources that are received by non-Medicare-certified

home health agencies. Nor is OTA aware of any

information about the proportion of funds from

sources other than Medicare that are received by

Medicare-certified home health agencies.

Medicaid expenditures for in-home services amounted

to nearly $1.4 billion in 1986 (224). It should be

noted, however, that Medicaid and all sources of

funding for in-home services other than Medicare

pay for services that are provided not only by

Medicare-certified and non-Medicare-certified home

health agencies, but also by individual providers

who are not connected with a home health agency

(298,821). Thus, expenditures for in-home services

by sources other than Medicare are not necessarily

payments to home health agencies.

Who Is Served

The question of who is served by home health

agencies is particularly important in considering the

capacity of home health agencies to link people with

dementia to services because, as discussed later in

this section, the case management that is provided

by home health agencies generally is “servicecentered’ ‘—i.e., it is usually provided only for

l%~ore 1981, for-profit home health agencies could not be Medicar&certif&l in States tit did not Mve lice~ laws for such agencies. The

Omnibus Budget Reconciliation Act of 1980 (Public Law 9&499) (efTective July 1981) allowed those agencies to participate in the Medicare progr~

thereby spurring a dramatic increase in the number and percentage of Medicare-certified private, for-profit agencies.

me recent increase in hospital-based home heahh agencies reflects, in large part, the attempt by hospitals to expand their services in other areas

to compensate for decreases in the use of inpatient care following the implementation of the Medicare Prospective Payment System in 1983, and of other

sim.ilargovernment andnongovernment initiatives that have been implemented in the past few years to control the use and cost of inpatient hospital care

(453,773)
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .321

people who are receiving other services from the

agencies.

Virtually all the available information about who

is served by home health agencies pertains to

individuals who receive Medicare-funded services

from Medicare-certified home health agencies. In

1986, 1.6 million individuals received Medicarefunded services from such agencies; 94 percent of

the individuals were over age 65, and 64 percent

were women (733). The 10 most frequent diagnoses

for these 1.6 million individuals were: cerebrovascular disease, congestive heart failure, hip fracture,

chronic airway obstruction, hypertension, diabetes,

pneumonia, other pulmonary conditions, heart attack, and urinary incontinence.

These diagnoses accounted for only one-fourth of

the individuals. Medicare enrollees over age 85 were

4 times more likely than Medicare enrollees age 65

or 66 to receive Medicare-funded in-home services.

It has been estimated that people who receive

Medicare-funded in-home services constitute 60 to

100 percent of the clients of individual Medicarecertified home health agencies (538). If that estimate

is correct, then up to 40 percent of the clients of some

Medicare-certified home health agencies receive

in-home services that are not Medicare-funded. Very

little information is available about those people or

about people who receive in-home services from

non-Medicare-certified home health agencies.

The 1982 National Long-Term Care Survey-a

large-scale study of a nationally representative

sample of elderly people who had at least one

limitation in activities of daily living (ADLs) or

instrumental activities of daily living (IADLs)-

gathered information on the subjects’ use of in-home

services. Data from the survey show that only 26

percent of the subjects received any paid in-home

services, including 20 percent who received both

paid and unpaid (informal) in-home services and 6

percent who received only paid in-home services

(469).

The extent to which the paid in-home services

received by subjects of the 1982 National LongTerm Care Survey were provided by home health

agencies is unclear. Among the subjects who received any paid in-home services, 14 percent received services that were paid for by Medicare

(469); these services were undoubtedly provided by

Medicare-certified home health agencies. Seven

percent of the survey subjects received in-home

services that were paid for in whole or in part by

Medicaid; 2 percent received services paid for in

whole or in part by private insurance, and more than

40 percent received in-home services they paid for

themselves. The in-home services paid for by

Medicaid, private insurance, and individuals for

themselves may or may not have been provided by

home health agencies. Evidence from various sources

suggests that families and other informal caregivers

of people with dementia who use paid in-home

services often hire maids, sitters, and other individuals who are not employed by or under contract to a

home health agency to provide the services (291,934).

Although little comprehensive information is

available about people who are served by home

health agencies, much has been written about factors

that influence who is served by these agencies.

Probably the major factor that influences who is

served by home health agencies is the availability of

reimbursement-particularly reimbursement from

Medicare. The Medicare home health services benefit is medical in orientation, and eligibility for the

benefit is restricted to “homebound” individuals

who need part-time or “intermittent” skilled nursing services and/or physical therapy or speech

therapy. A physician must certify that one of these

three services is “medically necessary” for an

individual. Medicare also pays for home health aide

services, occupational therapy, and social work

services, but only for individuals who are eligible for

Medicare-funded skilled nursing services, physical

therapy, or speech therapy.

Like the Medicare home health services benefit,

private insurance benefits for in-home services

generally are medically oriented,21 as ace the inhome services that States are required to provide in

their Medicaid programs. The Federal Medicaid

program also gives States the option to provide

health-related personal care services, but funding for

these less medically oriented in-home services and

for similar in-home services paid for with Older

Americans Act and Social Services Block Grant

funds is significantly less than the funding for the

zlBlue Cross and Blue Shield coverage extends, much as Medicare’s coverage does, only to home care that has been c-ledby aphysic~ m be@I

medically necessary. The company’s “long-termcareb enefi~’ which permits the provision of nonmedical “custodial” (or supportive) care, is currently

being marketed by only 15 of the 73 plans (401).
322 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

medically oriented services paid for by Medicare,

private insurance, and the required Medicaid program. Thus, there are strong financial incentives for

home health agencies to serve people who need

medically oriented in-home services.

Another factor that influences who is served by

home health agencies is technological advances that

allow the provision at home of sophisticated medical

treatments, such as mechanical ventilation, IV

antibiotics, and chemotherapy, previously available

only in hospitals (340,821,830). To the extent that

reimbursement is available for the use of these

treatments at home, there is an incentive for home

health agencies to serve people who need those

treatments.

A third factor that influences who is served by

home health agencies is the Medicare Prospective

Payment System and other government and nongovernment programs that have created financial

incentives for shorter hospital stays. As a result of

these programs, more people are discharged from

hospitals in a medically unstable condition and are

in need of short-term, post-hospital acute care. Since

the needs of these individuals generally correspond

to the eligibility criteria for Medicare-funded inhome services, there are financial incentives for

home health agencies to serve them.

When the Prospective Payment System was

implemented in 1983, many analysts suggested that

there would be a large increase in the number of

people who received Medicare-funded in-home

services (449,822). That increase did not materialize. In fact, the annual rate of increase in the number

of people who received Medicare-funded in-home

services for the years 1983-86 was smaller than it

had been for the preceding 4 years (1980-83) (733).

Instead, there was an increase in Medicare denials

of reimbursement for in-home services (449,836).

These denials generally were explained on the

grounds that the in-home services had been provided

for individuals who were not “homebound,” that

the services were not “medically necessary’ or

‘‘intermittent,’ or that they did not constitute

‘‘skilled nursing care” as defined in the Medicare

regulations. Anecdotal evidence suggests that the

impact of the denials has been to push Medicarecertified home health agencies further in the direction of serving individuals who need medically

oriented in-home services, particularly short-term,

post-hospital acute care services, and individuals

who are so severely impaired that they cannot leave

their homes. This effect has been exacerbated by the

growth in the overall number of home health

agencies, the resulting competition among agencies

for limited funds, and cuts in Federal funding for

programs that pay for nonmedical in-home services

(776,922).

Some researchers who have studied the changes in

the home care field in recent years have noted a shift

in the field “from providing services to a concern

with providing profitable services” (922). They

comment:

The national focus on cost containment . . . has

increased the competition not only between proprietary [for-profit] and nonprofit agencies, but also

among nonprofit agencies themselves. It is an

interesting dilemma for nonprofit agencies that have

operated on an ideology of providing services as

opposed to competing in an economic marketplace

and especially for those that do not offer clearly

defined medical services. Agencies that provide

supportive services have been faced not only with

the need to become more competitive in general but

also to alter their service structure to at least appear

as if they are quasi-medical. This is necessary if they

are to either recapture some of their lost government

funding or become more competitive in the open

market (922).

Some people who work in home health agencies

and are knowledgeable about the changes that have

occurred in the home health care field in recent years

have told OTA that although they recognize the

importance of medically oriented in-home services

and short-term, post-hospital acute care services,

they regret the shift away from the public health or

community health model of home care that was the

norm when VNAs and government agencies were

the predominant types of home health agencies. That

model of home health care, which may be best

characterized as a nursing rather than a medical

model, focuses on the family, not just the individual

patient, and stresses preventive health services,

health education, coordination of services, and

long-term, supportive services for people with

chronic conditions (42). Although many VNAs,

government agencies, and to a lesser degree, other

types of home health agencies continue to provide

these types of services and to serve individuals who

need these types of services, it is probably becoming

increasingly difficult for them to do so because of

the pressures discussed earlier.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .323

The extent to which home health agencies serve

people with dementia is unclear. The preceding

discussion of factors that influence who is served by

home health agencies suggests several reasons why

home health agencies might not be serving many

people with dementia. In addition, family caregivers

and advocates for people with dementia often

complain that the eligibility requirements for Medicare-funded in-home services discriminate against

people with dementia and that the medically oriented services provided by many home health

agencies are not appropriate for the needs of people

with dementia. Data from the 1982 National LongTerm Care Survey indicate that survey subjects who

were said to be “senile” by the proxy respondents

who answered the survey questions for them and

survey subjects who had characteristics that suggested they might have dementia (e.g., they needed

help in taking medicines), were more likely than

other survey subjects to have unmet needs for

in-home services and to be paying for their own

in-home services (469,81 1).

On the other hand, OTA’s informal discussions

with individuals who work for home health agencies

suggest that these agencies are serving many people

with dementia. Individuals who work for home

health agencies often express frustration about the

lack of adequate funding for in-home services for

people with dementia and concern about the difficulty of providing in-home services for dementia

patients who frequently are not aware of their need

for services and may not be capable of making

decisions about services for themselves. It is clear,

however, that many of their clients are people with

dementia.

Two analyses of data from the 1982 National

Long-Term Care Survey and 1982 Medicare billing

records-one by the General Accounting Office and

the other by researchers at Duke University-shed

some light on the question of whether home health

agencies serve people with dementia (490a,811).

Both analyses were intended to identify distinct

categories of individuals who receive Medicarefunded in-home services. Both research groups

identified a category of individuals who are chronically ill, have multiple medical problems, including

diseases and conditions that cause dementia, and are

severely functionally impaired. Moreover, both

research groups found that, on average, individuals

in this category received more Medicare-funded

in-home services than individuals in any of the other

identified categories, including the categories of

individuals with severe medical problems such as

hip fractures, cancer, and heart attack. The Duke

University research group also identified another

category of individuals who had cognitive impairments, but few acute or severe medical problems. On

average, individuals in the latter category received

fewer Medicare-funded in-home services than individuals in any of the other categories. These findings

suggest that at least with respect to Medicarecertified agencies, people with dementia who have

medical problems in addition to their cognitive

impairments are likely to be served, whereas people

with dementia who do not have other medical

problems may be less likely to be served by the

agencies.

In addition to their regular services, some home

health agencies have established special programs

for people with Alzheimer’s and other diseases that

cause dementia. Box 8-N describes AL-C*A*R*E*,

a joint project of two home health agencies in

Washington, DC, that provides in-home respite care

and other services for people with dementia and their

caregivers. The project is funded primarily by the

DC Office on Aging.

Another home health agency that has established

a special program for people with dementia is the

Visiting Nurse Association of the Valley, a Medicarecertified VNA in Derby, Connecticut (341). The

program provides in-home mental health services

for people with dementia and their caregivers and for

elderly people with medical conditions whose progress is impeded due to psychological problems.

Originally established in 1979 with a Federal grant,

the program now receives both State funds and some

Federal grant funds.

Both AL-C*A*R*E* and the program of the

Visiting Nurse Association of the Valley provide

special training for the homemakers and home health

aides who work for the agencies’ dementia programs. Apart from the staff of special Alzheimer’s

programs, though, it is unclear to what extent the

staff of home health agencies are knowledgeable

about dementia. In the course of this study, OTA

staff heard many complaints about home health

agency staff members who were said to be uninformed about dementia and the care of people with

dementia. No data are available to determine the

extent of this problem.
324 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-N—AL-C*A*R*E*: A Dementia-Specific Project of Two Home Health Agencies in

Washington, DC

AL-C*A*R*E* (Alzheimer’s-Coordination, Assessment,Respite, Education) is a joint project of the Visiting

Nurse Association of Washington,a Medicare-certified home health agency, and Homemaker Health Aide Services

of the National Capital Area, a homemaker-home health aide agency that is not Medicare- certified. AL-C*A*R*E*

serves residents of Washington, DC, who are overage 60, live with a caregiver, and have a dementing illness severe

enough to interfere with their daily functioning. The project provides in-home assessments, information and referral,

respite cam, and caregiver training and support.

AL-C*A*R*E’s in-home assessments are done by a nurse practitioner employed by the Visiting Nurse

Association of Washington and a social worker employed by Homemaker Health Aide Services of the National

Capital Area. Since the primary objective of the project is to support caregivers, the in-home assessments focus as

much on the needs of the primary caregiver as on the needs of the patient Reassessments are conducted every 3

months. The social worker furnishes referrals to other community service providers, as needed, and the nurse

practitioner provides a link to the patient’s physician.

ALC*A*R*E*’s in-home respite services are provided by specially trained homemakers who are employed

by Homemaker Health Aide Services of the National Capital Area and have volunteered to work in the

AL-C*A*R*E* project. The specific in-home services provided by the homemakers differ depending on the needs

of the patient and caregiver. Less emphasis is placed on the completion of home management tasks than on

furnishing whatever assistance will offer relief to the caregiver. Whenever possible, respite services are provided

at times selected by the caregiver. As of June 1988, there was no charge for the respite services, but a contribution

of $2 an hour was suggested.

The AL-C*A*R*E* homemakers receive an 8-hour orientation that includes information about Alzheimer’s

and other diseases that cause dementia and the impact of the diseases on patients and their families and suggestions

about caregiving techniques and methods for supporting and assisting caregivers. The homemakers are supervised

on an ongoing basis by the project social worker who assists the homemakers in problem-solving and provides

emotional support for them. Bimonthly meetings are held for the homemakers to provide additional information

about caregiving techniques, and to give the homemakers an opportunity to share feelings about their work m a

supportive atmosphere.

One of AL-C*A*R*E*’s major objectives is to provide information and education for caregivers. Caregivers

are given a “Family Information Packet” that was developed by AL-C*A*R*E* and contains an overview of

Alzheimer’s disease; tips on caring for and communicating with people with dementia; suggestions for dealing with

problems, such as wandering and incontinence; lists of local support groups, sources of legal services and adult day

centers; an “environmental check list” of common safety problems in the home; and a list of publications about

dementia. The nurse practitioner provides caregiver education and training about common health problems m

people with dementia medications, nutrition, approaches for handling problem behaviors, and stress reduction

techniques for the caregivers. Caregiver training groups are held about eight times a year. sometimes guest speakers

are invited to discuss issues of special interest to caregivers, but the training groups also provide emotional support

for caregivers.

SOURCES: M.Z. Kocin, project director, AL-C*A*R*E*, Washington, DC, personal communications, June 21, 1988; M.Z. Kocin and V.

Kendrick, “AL-C*A*R*E*: A Respite Model for Long-Term Care,“ Caring 7(4):39-43, Aril 1988,

In 1986, the Foundation for Hospice and Home Linking Functions

Care published a training manual, How To Care for

—

the Alzheimer’s Disease Patient: A Comprehensive

Training Manual for Homemaker-Home Health Information and Referral

Aides (378), and other relevant training materials The primary function of home

have also been developed (see, e.g., E.L. Ballard and health agencies is to provide inL.I?. Gwyther, In-Home Respite Care: Guidelines home services for their clients. Peofor Training Respite Workers Serving Memory- ple who are already receiving inImpaired Adults (50)). OTA does not know how home services from a home health

widely these training materials are used or what, if agency and need services that are

any, special training about dementia is available to not offered by the home health agency (e.g.,

the staff of home health agencies. home-delivered meals or legal services) are often
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 325

referred to other agencies for the needed services.

These referrals are usually made by a home health

agency nurse or by a home health agency social

worker if the client is being seen by a social worker.

Anecdotal evidence indicates that other home health

agency staff members, including homemakers and

home health aides, also sometimes refer agency

clients to other community service providers.

Home health agencies generally are not in the

business of providing information and referrals for

the general public. Nevertheless, people who call a

home health agency for services often receive a

referral to another community agency or individual

service provider if the home health agency does not

offer the services they need or if they are not eligible

for the home health agency’s services. An intake

nurse at one home health agency estimates, for

example, that she refers an average of one-third of all

incoming calls to other agencies or individual

service providers (239). OTA is not aware of home

health agencies that have followup procedures to

determine whether individuals who receive such

referrals but are not clients of the agency obtain the

services they need.

Home health agencies typically do not develop

and maintain comprehensive community resource

lists for use in referring their clients and other callers

to services (239). Instead, some home health agency

nurses and other staff members use resource lists

developed by other agencies, and some make

referrals on the basis of their own knowledge of

agencies and individual service providers in the area.

One commentator has suggested that home health

agency nurses and other staff members are probably

more likely to have the names of community service

providers “on their roladex” than to use a comprehensive resource list (239).

Case Management

H

Unlike providing information and

referrals, case management is a

- 

~ T ~ r primary function of home health

agencies. The home care industry

points out that home health agencies “have been acting as case

managers for many years, providing those services

they can and trying to arrange for other services the

patient may need through other community service

agencies” (275). Certainly, the five functions that

OTA has defined as core case management functions

(i.e., assessing a client’s needs, developing a plan of

Photo credit: On Lok Senior Health Services

The case management provided by home health agencies

generally is service-centered; that is, it is provided

for people who are receiving in-home services

from the agencies.

care, arranging and coordinating services, monitoring the services, and reassessing the client’s situation) have always been part of community health

nursing and public health nursing (22,265) and are

integral components of the community health or

public health model of home care.

The extent to which case management functions

are provided by different types of home health

agencies and for different types of clients undoubtedly varies, but the results of a 1987 study of home

visits by nurses from Medicare-certified home

health agencies in five States show that, on average,

case management functions constituted almost half

of the total nursing time associated with the visits

(776). The researcher observed 75 home visits by 26

nurses from 8 home health agencies--one VNA, one

public agency, 2 private, for-profit agencies, and 4

hospital-based agencies. The study found that the

average nursing time associated with a home visit

(not counting travel time) was 73 minutes, of which

41 minutes were spent in the client’s home, and 32

minutes were spent before or after the visit on care

coordination functions, such as contacting other

service providers for the client and documentation.

On average, 20 percent of the total nursing time

associated with a home visit was spent on client

assessment, and 26 percent was spent on care

coordination. Psychosocial support, which also might

be considered case management, accounted for an

additional 9 percent of total nursing home associated

with the typical visit. Other components of the visit
326 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

were client education, which accounted for 13

percent of the nursing time associated with the

typical visit, documentation, which accounted for 19

percent, and physical care, which accounted for 9

percent. Although the small number of home health

agencies studied means that the results of the study

cannot be generalized with any certainty, its findings

tend to support the conclusion that home health

agencies are providing case management.

Twenty percent of the 75 home visits observed by

the researcher were initial visits to the client, and 80

percent were repeat visits (776). In general, more

time was spent on assessment and care coordination

in the initial visits than the repeat visits. There were

also differences in the average amount of time spent

on different functions by nurses from different types

of home health agencies. Nurses from the VNA and

the public agency spent more time than nurses from

the private, for-profit and hospital-based agencies on

physical care and care coordination, whereas nurses

from hospital-based agencies spent more time on

assessment. The important finding of the study for

this OTA assessment is not any of the precise

percentages or specific differences between types of

home health agencies, however, but the large

proportion of total nursing time devoted to case

management functions.

As noted earlier, the case management provided

by home health agencies generally is servicecentered; that is, it is furnished in conjunction with

the provision of services. Thus, people who receive

services from a home health agency may also receive

case management, but people who are not receiving

services from the agencies are unlikely to receive

case management. Some people favor servicecentered case management because they think that

case management is performed most effectively in

conjunction with the provision of services and that

patients and families are often more comfortable

with case management performed by a service

provider, such as a home health nurse, than by

someone whose sole function is case management

(283,290). Other people are opposed to servicecentered case management because they think that

service providers tend to over-recommend services

and to refer their clients to the agencies’ own

services even when other, more appropriate services

may be available from another agency. These

differing contentions are discussed in chapter 1.

With respect to home health agencies’ capacity to

link people with dementia to services, the important

point is that people with dementia may need case

management at anytime in the course of their illness,

not just at those times when they need the kinds of

services provided by home health agencies.

Both Illinois and New York use home health

agencies to provide case management for a Statefunded long-term care program, and in both States,

the home health agencies provide case management

for some people who are not receiving in-home

services from the agency. In Illinois, one-third of the

agencies that furnish case management for the

State’s Community Care Program are home health

agencies. These home health agencies are not

permitted to provide in-home services for the

program’s clients (587). In New York, as of 1986,46

percent of the 95 local agencies providing case

management for the State’s Nursing Home Without

Walls Program were home health agencies (472).

These agencies have the option to provide services

for the program’s clients but do not always do so

(354).22

In general, the case management provided by

home health agencies is paid for only indirectly, if at

all, by third-party payers. For many programs that

pay for in-home services, some of the costs of case

management are included in the reimbursable administrative costs associated with the provision of

in-home services. The case management provided

by home health agencies in the Illinois and New

York programs just described is paid for by Medicaid.

Visiting Nurse and Home Care, Inc., a VNA in

Hartford, CT, operates an Alzheimer’s Disease

Program that provides case management for people

with dementia (see box 8-O). Some of the in-home

services that the program provides or arranges for its

clients are paid for by Medicare. Other services are

paid for by Medicaid, private insurance, patients and

their families, United Way, or State grant funds. In

addition, each of the nine towns served by Visiting

Nurse and Home Care, Inc. has a contract with the

agency to provide services for its residents who have

no other source of funds for needed services (283).

The case management provided by the Alzheimer’s

Disease Program is paid for, generally indirectly,

with funds from all these sources.

~Ill~ois’ Clmmm@ Cme F%ogram and New York’s Nursing Home Without Walls Program are discussed iII ch. 7.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 327

Public Education

Home health agencies perform

some public education activities.

Home health agency nurses sometimes conduct educational programs

at senior centers, adult day centers,

nursing homes, and congregate living facilities. Such programs often focus on topics

such as nutrition, diabetes, and high blood pressure

(239). The programs-while increasing the agency’s

visibility-also provide a valuable service to the

public. In addition, home health agency staff members sometimes distribute pamphlets and other

educational materials to their clients. OTA does not

know how frequently these programs and educational materials focus on Alzheimer’s disease, dementia, or services for people with dementia.

Outreach

Many home health agencies perform various outreach activities.

Frequently, a home health agency

nurse who is visiting a client in an

apartment building or a congregate

living facility identifies other people in need of care. The nurse may inform the

manager of the facility of the home health agency’s

services and leave the agency’s number. Sometimes,

one client of a home health agency informs the

agency nurse that another individual needs assistance (239). Home health agency nurses may also be

involved in community screening programs and

identify people in need of services through such

programs. As a result of these activities, home health

agencies undoubtedly reach some people with dementia and some caregivers who need help but

would not seek services themselves. On the other

hand, home health agencies generally do not have

systematic procedures for identifying isolated people with dementia and isolated caregivers. In fact,

some home health agency staff members would

probably consider the implementation of such procedures inappropriate at present because of the insufficient availability of in-home services and funding

for in-home services for people with dementia.

Role in Allocating Services and Funding

Most home health agencies do not control access

to services other than those they provide. On the

other hand, home health agencies provide services

funded by many different programs. Consequently,

they are frequently required to determine who will

receive services and what services they will receive

within the context of the eligibility and coverage

regulations of the funding programs. In addition, as

noted earlier, at least two States, Illinois and New

York, use home health agencies to provide case

management in a State-funded long-term care program, and the functions of the agencies that provide

case management in these programs include determining people’s eligibility for services and allocating services and funding for services. Other States

and local governments may also use home health

agencies in this capacity.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, home health care agencies offer several

advantages:

Home health agencies serve people of all ages

and have extensive experience serving elderly

people.

Home health agencies provide case management for many of their clients.

Home health agencies provide information and

referrals for their clients and for some people

who are not their clients.

Home health agencies often regard family

members and other informal caregivers as part

of the client unit, and conduct an assessment

and develop a plan of care that includes the

needs of these caregivers as well as the needs of

the patient.

There are more than 12,000 home health

agencies across the country.

Despite these considerable advantages, there would

be several drawbacks to designating home health

agencies as the basis of a national system to link

people with dementia to services. One drawback is

that home health agencies generally provide case

management only for people who are receiving

in-home services from the agency. People with

dementia may need case management at any time in

the course of their illness, not just at times when they

need or are receiving in-home services. This section

has discussed many factors that are pushing home

health agencies more in the direction of serving

people who need medically oriented in-home services—particularly short-term, post-hospital, acute

care services. Although some individuals with
328 . Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-O-The Alzheimer’s Disease Program of Visiting Nurse and Home Care, Inc.,

in Hartford, Connecticut

Since 1984, the Hartford branch of Visiting Nurse and Home Care, Inc., a Medicare—certified home health

agency, has operated an Alzheimer’s Disease Program that provides case management and in-home services for

people with dementia and their caregivers. Visiting Nurse and Home Care, Inc., serves a nine-town region in the

greater Hartford area. As of 1988, the Alzheimer’ s Disease Program was serving 40 to 50 people at a time. According

tothe program coordinator, the clients of the Alzheimer’s Disease Program are generally retained for longer periods

and require more case management than other clients of Visiting Nurse and Home Care, Inc.

The Alzheimer’s Disease Program makes use of all the services offered by Visiting Nurse and Home Care, Inc.

Consequently $ clients of the program have access to all the clinical services of the home health agency, including

nursing, physical therapy, speech therapy, occupational therapy, medical social work, home health aide,

homemaker, and chore services, and home-delivered meals. In addition, the Alzheimcr’s Disease Program has

developed relationships with local agencies and individuals that provide a variety of services for people with

dementia, and there are many cross referrals between the Alzheimer’s program and these other service providers.

Initial referrals to the Alzheimer’s Disease Program come primarily from families or doctors. Since the

Alzheimer’s Disease Program started, monthly average of 25 to 26 people who are referred to Waiting Nurse and

Home Cam, Inc. have some problem in mental status that is mentioned at the time of the referral, Those individuals

are referred to the Alzheimer’s Disease Program. In addition, other clients of Visiting Nurse and Home Care, Inc.,

who are identified as potentially benefiting from the Alzheimer’s Disease Program, are also referred to the program

According to the program coordinator, families of people with dementia often contact the program for information

about services several times, often over a period of months or years, before actually deciding to use help.

The Alzheimer’s Disease Program is staffed by a geriatric services’ group consisting of three registered nurses

and a social worker. Both a geriatrician and geriatric psychiatrist are available to the program for consultation,

The Alzheimer’s Disease Program provides a professionally led support group for the families and other

informal caregivers of its clients. A home visit is required before a caregiver is admitted to the support group. To

encourage caregivers to attend the support group, the program arranges for sitters for the dementia patients and/or

transportation for the caregivers. The support group meets once a week for 10 weeks. Then, the participants can elect

to join a monthly ongoing support group. The program coordinator has noted that participants demonstrate

significant changes in their caregiving behavior after attending support group meetings: some elect to use respite

care for the first time, others seek necessary institutionalization, and others involve their family members more in

caring for the patient.

For the personnel who work with dementia clients, the Alzheimer’s Disease Program provides regular

in-service education and is developing a support group. Another support group has been organized for professionals

who work in isolation in the community with dementia patients. A monthly case conference is held for geriatric

nurses and other professionals who have an interest in geriatrics and who are used as ‘‘baclap’ staff as the patient

load increases.

SOURCE: Visiting Nurse and Home Care, Inc., VNA Health Resources, Inc., and VNA Fond, Inc., “Anuual

and M. Cushman, Plainville, CT, 1987; N. Gustafson, program coordinator

Report," prepared by L. Preble,

Care, Inc., Hartford, CT, letter to the office of

 or, Alzheimer’s Disease Program, Visiting Nursed Home

Technology Assessment, U.S. Congress, Washington, DC, Feb. 24, 1988.

dementia need such services, many do not. Individu- agencies do not maintain a comprehensive resource

als who do not need the type of services provided by

home health agencies are unlikely to receive those

services and therefore unlikely to receive case

management from the agencies.

A second drawback is that although home health

agencies provide information and referrals for their

clients and in connection with intake for their own

services, they usually do not consider the provision

of information and referrals for the general public as

one of their primary functions. Many home health

list to use in referring callers to-community service

providers, and most do not have systematic followup procedures to determine whether people who are

not their clients but for whom they provide referrals

actually obtain the services.

A third drawback is that home health agencies

generally do not have systematic outreach procedures to identify isolated people with dementia and

isolated caregivers who are not able to seek help for

themselves. Lastly, although home health agencies
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 329

have extensive experience in providing in-home

services for elderly people, including some people

with dementia, anecdotal evidence suggests that

some home health agency staff members are not

knowledgeable about dementia or the care of people

with dementia.

In considering the capacity of home health

agencies to constitute a national system to link

people with dementia to services, the large number

of home health agencies is an advantage. It is

unclear, however, if Congress designated home

health agencies to constitute such a system, whether

the system should be made up of: 1) all Medicarecertified home health agencies, 2) only certain types

of Medicare-certified home health agencies (e.g.,

Medicare-certified VNAs, public agencies, and private, nonprofit agencies); 3) certain types of home

health agencies regardless of their certification

status; or 4) all Medicare-certified and non-Medicare-certified home health agencies. Given the

existing link between the Federal Government and

Medicare-certified home health agencies, it might be

easier to implement a national linking system if only

Medicare-certified agencies were included. Moreover, the Federal Medicare regulations create a certain

uniformity and some basic standards for Medicarecertified agencies. On the other hand some non-Medicarecertified agencies, particularly some homemakerhome health aide agencies, provide in-home services

that closely match the needs of many people with

dementia, and these agencies would be valuable

components of the linking system. If Congress chose

to designate home health agencies to constitute a

national linking system, this issue would require

further analysis.

SOCIAL HEALTH MAINTENANCE

ORGANIZATIONS

A social health maintenance organization

(S/HMO) (pronounced shmo ) is an innovative

organizational entity that offers voluntarily enrolled,

elderly Medicare beneficiaries a package of acute

and long-term care services and operates on a

capitated, prospectively freed budget. In essence, a

S/HMO expands the acute care financing and service

delivery model of a health maintenance organization

(HMO) to include some long-term care services. As

of 1990, there are four S/HMOs in the United States,

all of which are part of a congressionally mandated

demonstration project—the National S/HMO Demonstration. 23 The four S/HMOs are:

●

●

●

●

Medicare Plus II, in Portland, Oregon, which is

sponsored by a large HMO with more than

280,000 members and extensive experience in

providing acute care services to Medicare

beneficiaries (Kaiser Permanente);

Seniors Plus, in Minneapolis, Minnesota, which

is sponsored by a partnership between a large

HMO (Group Health, Inc.) and along-term care

agency (the Ebenezer Society);

Elderplan, in Brooklyn, New York, which is

sponsored by a comprehensive long-term care

agency with no prior experience in administering a prepaid health plan (Metropolitan Jewish

Geriatric Center); and

SCAN Health Plan, in Long Beach, California,

which is sponsored by a case management

agency with no prior experience in administering a prepaid health plan (Senior Care Action

Network) (274,841).

OTA has included S/HMOs in its analysis of

agencies that might constitute a national system to

link people with dementia to services because, in

theory at least, the S/HMO model of service delivery

in which a single organization provides or contracts

for and arranges acute and long-term care services

for its members eliminates for those individuals

many of the problems in locating and arrranging

services that are the topic of this OTA report (421).

S/HMOs link some of their members to many of the

kinds of services that may be needed for a person

with dementia, and it is conceivable that S/HMOs

could link all of their members with dementia to

such services.

Overview of the Agencies

The National S/HMO Demonstration requires the

four S/MHOs to offer their members all the acute

health care services that Medicare covers (e.g.,

hospital inpatient and outpatient services, physician

and diagnostic services, and specified home health

care and skilled nursing home services) (841). In

addition, the S/HMOs are required to offer their

members certain other services not covered by

Medicare, including long-term care services such as

personal care, homemaker services, adult day care,

~~e natio~ S/HM() demonstration was mandated by the Deficit Reduction Ad of 1984 (PubIic Law 98-369). It begati in 1985, ~d =~ntinue

as a demonstration until September 1992 (2,841).
330 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

respite care, transportation, and 2 to 4 months of

nursing home care beyond the Medicare benefit

(274,452).

To meet the requirements of the National S/HMO

Demonstration, the HMO that sponsors Medicare

Plus II had to add long-term care services to the acute

care services it was already offering its elderly

members (841). In contrast, the agencies that sponsor Elderplan and SCAN Health Plan had to add the

acute care services required by the demonstration to

the case management and long-term care services

they were already offering-in effect by setting up

new HMOs. Having to start new HMOs was a major

challenge for these agencies (269,452). Seniors Plus

is cosponsored by an HMO and a long-term care

agency, and these agencies were already offering,

respectively, the required acute care and long-term

care services. According to one commentator, the

S/HMOs that are sponsored or cosponsored by

HMOs (Medicare Plus II and Seniors Plus) had less

difficulty than the other two S/HMOs in enrolling

members (half of Medicare Plus II’s and more than

half of Seniors Plus’ S/HMO members were conversions from their affiliated HMOs) (295). The S/

HMOs sponsored or cosponsored by HMOs also had

more previous experience with controlling health

care utilization and processing payments within a

managed care system (295).

Although there are currently only four S/HMOs in

the United States, existing HMOs could provide a

basis for developing more S/HMOs. As of May

1987, there were at least 734 HMOs in this country

(279), 214 of which had elected to participate in the

Medicare program (588,840). Established HMOs

that already serve Medicare beneficiaries, such as

“TEFRA HMOs, ” probably could develop

S/HMOs more easily and successfully than other

HMOs (841). “TEFRA HMOs” are HMOs participating in Medicare as “risk-contractors” under

cavitation payment arrangements initiated by the

Tax Equity and Fiscal Responsibility Act of 1982

(TEFRA). Many TEFRA HMOs already provide

more acute and primary care services than Medicare

does, 24 but they generally do not provide long-term

care services. In May 1988, about 137 of the HMOs

participating in Medicare were TEFRA HMOs

(840).

S/HMOs derive their revenue from three major

sources: 1) per capita payments from the Federal

Government for Medicare beneficiaries; 2) monthly

premiums (ranging from $29 to $49), deductibles,

and copayments from S/HMO members; and 3) per

capita payments from State Medicaid programs for

S/HMO members who are eligible for Medicaid

(270,841). For each of their Medicare members,

S/HMOs receive a fixed per capita payment from the

Federal Government equal to 100 percent of the

average per capita cost of providing comparable

fee-for-service benefits for a Medicare beneficiary

living in the S/HMO’s service area. For each

Medicare member found to be “nursing home

certifiable’ —i.e., to meet the State’s criteria for

Medicaid-funded nursing home care-the S/HMOs

receive a higher per capita payment (270,841).

In the first years of the S/HMO demonstration, the

Federal Government and State Medicaid programs

shared financial risk with the S/HMO sponsors

(2,841). Now the four S/HMOs are at full financial

risk for any losses they incur.

Who Is Served

Each S/HMO serves people over age 65 who are

eligible for Medicare and choose to enroll in the

S/HMO (2,274). As of December 1987, the four

S/HMOs had about 15,000 members:

. Medicare Plus II had 4,974 members,

. Seniors Plus had 2,597 members,

. Elderplan had 4,307 members, and

. SCAN Health Plan had 2,840 members (2).

In general, S/HMOs have memberships that are

proportionately representative of the overall Medicare elderly population in terms of sex, age, living

arrangements, and health status (270,841). About

one-third of S/HMO members are elderly people

who live alone.

In part because S/HMOs are a Medicare demonstration and in part because the per capita payments

S/HMOs receive from the Federal Government are

based on the average per capita cost of comparable

fee-for-service benefits for Medicare beneficiaries,

each S/HMO needs to enroll a membership that is no

more functionally impaired than a cross-section of

the elderly Medicare population (452). To do so,

S/HMOs are permitted to screen their applicants and

~SeWicti tiat me not covered by Medicare but are offered by some TEFRA HMOS include extra hospital days, annual physicals, and prescription

drugs (438,439).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 331

to “queue” (put on a waiting list) severely and

moderately impaired applicants as necessary. Three

S/HMOs (Seniors Plus, ElderPlan, and SCAN

Health Plan) include queuing questions on their

application forms and sort clients into functional

impairment categories based on their responses to

two questions concerning mobility and limitations

in activities of daily living (ADLs) (452). These

three S/HMOs have been able to maintain a member

population that is roughly representative of elderly

Medicare beneficiaries in terms of distribution of

functional impairment:

●

●

●

80 percent or more of their members are

unimpaired or only mildly impaired,

7 to 14 percent of their members are moderately

impaired, and

5 to 8 percent of their members are severely

impaired (274,452).

Medicare Plus II has chosen not to queue but also

seems to have been able to maintain such a case mix

(452).

OTA is unaware of any data on how many people

with dementia are members of the four S/HMOs. It

is possible, however, that the queuing mechanisms

used by Seniors Plus, SCAN Health Plan, and

ElderPlan prevent some moderately or severely

impaired people with dementia from enrolling.

Once an individual is enrolled in one of the

S/HMOs, decisions about whether the individual

will receive specific S/HMO services are made by

various different people. Decisions about acute

medical care services are generally made by physicians employed by the HMOS and other organizations that provide these services for the S/HMOs

(421). At Medicare Plus II, one of the two S/HMOs

sponsored by an HMO, decisions about all services

ordinarily covered by Medicare are made by hospital

discharge planners, home health agency staff, and

others who are employed by or work under contract

with the sponsoring HMOs; the S/HMO case managers are responsible for decisions about the additional

long-term care services required of S/HMOs but not

ordinarily covered by Medicare (2). At ElderPlan

and SCAN Health Plan, the two S/HMOs not

sponsored by HMOs, certain S/HMO case managers

are primarily responsible for discharge planning at

the hospitals and nursing homes with which the

S/HMOs have contracts, and other S/HMO case

managers are primarily responsible for decisions

about long-term care services for S/HMO members

who are not hospitalized or in a nursing home.

The process by which S/HMO case managers

make decisions about which S/HMO members will

receive S/HMO long-term care services is described

briefly below. Ongoing case management is provided for all S/HMO members who receive longterm care services. Thus, the decisions made by

S/HMO case managers about which S/HMO members will receive long-term care services also

determine which members will receive ongoing case

management. OTA is not aware of any data on how

many individuals with dementia who are members

of S/HMOs receive S/HMO long-term care services

and case management. It is likely, however, that

certain aspects of the process by which S/HMO case

managers decide which S/HMO members will

receive long-term care services prevent some people

with dementia from receiving services and case

management.

At the time of their enrollment in a S/HMO, all

S/HMO members are sent a questionnaire on which

they are to report basic social, health, and functional

information (452). The completed questionnaires

are screened by S/HMO case managers using a set of

risk criteria to identify which members may need

various types of services. Responses that suggest

that a member may need long-term care services

automatically trigger a phone call by the case

manager (see below).

The questionnaire sent to new members is generally reliable for identifying individuals who are

severely impaired as measured by the need for

assistance with ADLs, but it does not include

questions about mental status (270,452). That shortcoming means that responses to the questionnaire

are not very useful in identifying individuals with

dementia (452). To identify such individuals from

the questionnaire, the S/HMO case managers would

have to rely on clues, such as apparent confusion in

completing the form or the member’s use of

psychotropic drugs. A shorter version of the questionnaire is sent to members annually. The shorter

version includes a question on severe memory loss.

Based on new members’ responses to the questionnaire, S/HMO case managers call all the members who the case managers think may need longterm care services-including all members who case

managers think may qualify as ‘‘nursing home

certifiable’ (452). These telephone calls are used by
332 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

the case managers to identify individuals with

mental impairments, as well as to verify the information on the questionnaires and provide information

for new members about S/HMO services. If a

S/HMO case manager concludes, based on the call

to a member and the member’s questionnaire, that

the member does not need long-term care services or

does not meet the S/HMO’s eligibility criteria for

such services, but the individual does seem to be at

risk, the case manager may decide that the individual

should be monitored, as discussed later in this

section.

S/HMO members who the case managers think

probably need long-term care services and who

probably meet the S/HMO’s criteria for long-term

care services-including all members who case

managers think probably qualify as ‘‘nursing home

certifiable" —receive an in-home assessment by a

S/HMO case manager (452,841). The in-home

assessment, which usually takes 45 to 90 minutes,

includes the member’s health status, functional

status, mental status, living arrangements, informal

supports, and utilization of services. Following the

in-home assessment, the case managers decide

which members qualify for S/HMO long-term care

services, develop service plans for those members,

and arrange the services.

The S/HMOs use three different sets of eligibility

criteria to determine which members qualify for

S/HMO long-term care services-narrow criteria,

broad criteria, and implicit criteria (452). Medicare

Plus II and ElderPlan have narrow eligibility criteria, requiring that their members qualify as "nursing

home certifiable” by State standards in order to be

eligible for long-term care services (2,452). Different States have different standards for determining

who is nursing home certifiable, but in general, the

standards identify individuals who are physically or

mentally quite disabled (2). In December 1987, 8

percent of Medicare Plus II’s enrollees and 4 percent

of ElderPlan’s enrollees qualified as nursing home

certifiable (2).

The narrow eligibility criteria used by Medicare

Plus II and ElderPlan would undoubtedly exclude

some members with dementia—for example, those

in the early stages of a dementing disease. Furthermore, not all Medicare Plus II or ElderPlan S/HMO

members who qualify as nursing home certifiable

actually receive long-term care services (2). The

S/HMO long-term care benefit is intended to supplement but not replace what a member’s family or

other informal caregivers can do. If a member who

qualifies as nursing home certifiable is judged by the

S/HMO case manager to have adequate informal

supports, that person will not receive long-term care

services.

SCAN Health Plan uses broad eligibility criteria,

requiring only that a member be determined by a

case manager to be either moderately or severely

impaired (452). Members in these two categories of

impairment make up about 20 percent of SCAN

Health Plan’s membership but would not necessarily

include all of the S/HMO’s members with dementia.

Seniors Plus uses implicit eligibility criteria to

determine its members’ eligibility for long-term care

services (452). This S/HMO formally limits eligibility to members who are nursing home certifiable

(about 8 percent of Seniors Plus members in 1987

[2]) but in practice allows the case manager and the

director of its case management unit to extend

long-term care benefits to other members if they

believe that the members are “at risk” and in need

of long-term care services. Thus, a person with

dementia at SCAN or Seniors Plus might or might

not receive long-term care services.

In addition to limitations on eligibility for S/HMO

long-term care services, each S/HMO has imposed

the following dollar limits on the amount of longterm care services an eligible member may receive.

The S/HMO case managers are responsible for

keeping expenditures within these limits:

Medicare Plus II, $12,000 per year, with a

monthly cap for each member of $1,000 for

community care or 100 days of nursing home

care per spell of illness;

Seniors Plus, $6,500 per lifetime for nursing

home care and $5,000 per year for communitybased care; Seniors Plus has no set monthly

budget cap, but the S/HMO case managers

must obtain approval of the S/HMO director

prior to authorizing any services costing over

$100 per week;

ElderPlan, $6,500 annually, with a monthly cap

of $450 per month; and

SCAN Health Plan, $7,500 per year, with a

monthly cap of $625 (2,841).
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .333

Data from the first 2 years of the National S/HMO

Demonstration show that only a few S/HMO members used enough long-term care services to reach

these dollar limits (841).

Linking Functions

Information and Referral

m

S/HMOs are intended to serve

their members, and they do not

provide information and referrals to

the general public. S/HMO case

managers do provide information

and referrals for S/HMO members

in some instances (2). S/HMO case managers are

supposed to refer S/HMO members to free or

low-cost community services whenever such services are available and appropriate. For this reason, a

S/HMO case manager may refer a S/HMO member

to services in the community even if the services are

available through the S/HMO. A S/HMO case

manager may also refer a member to services in the

community if the person needs services that are not

included in the S/HMO’s benefit package (e.g., legal

help, shared housting, home-delivered meals, friendly

visitors, senior center) (841). Lastly, if the amount of

long-term care services a member receives reaches

the dollar limits listed earlier, the S/HMO case

manager may refer the member to non-S/HMO

services until the benefit renews (usually annually)

(2).

Case Management

mation from a

Case managers play a central role

in the S/HMO model of service

delivery. As already described, S/

HMO casemanagers determine which

S/HMO members will receive longterm care services based on inforquestionnaire completed by each

member, a telephone screen conducted by the case

managers, and home visits conducted by the case

managers. For S/HMO members found to need and

be eligible for S/HMO long-term care services, the

case managers develop service plans and arrange

and coordinate the services. Thus, in the S/HMO

model, case managers determine not only which

members can receive long-term care services, but

also what long-term care services and how much of

these services they will receive.

At all four S/HMOs, the case managers are either

health professionals, including registered nurses,

social workers, and others (e.g., a physical therapist,

a speech pathologist), or people with college degrees

in human services) (841). As of December 1987,

each of the S/HMOs had 5 to 7 case managers with

an average caseload of 50 to 71 clients (2).

The case management provided by S/HMOs

differs from that provided by many other categories

of agencies discussed in this chapter in that it is

provided in the context of a service delivery system

operating on a capitated, prospectively fixed budget

in which there are strong incentives to control the

utilization and costs of services (2,270). In such a

system, many of the functions of a case manager are

essentially administrative tasks related to the operation of the system (e.g., determining an individual’s

eligibility for services and authorizing the services).

S/HMO case managers also perform the five functions that OTA defines as core case management

functions-namely: 1) assessing a client’s needs, 2)

developing a plan of care, 3) arranging and coordinating services, 4) monitoring and evaluating the

services delivered, and 5) reassessing the client’s

situation as the need arises. The way they perform

these functions is undoubtedly influenced by the

focus of the system on controlling the utilization and

costs of services, however.

As noted earlier, all S/HMO members who

receive long-term care services also receive ongoing

case management. In December 1987, the percentage of S/HMO members receiving long-term care

services and case management was 5 percent at

Medicare Plus II, 10 percent at Seniors Plus, 2

percent at ElderPlan, and 7 percent at SCAN Health

Plan (2). OTA does not know what proportion of

these individuals had dementia.

Ongoing case management is provided for S/HMO

members who are receiving long-term care services

to make sure they receive prescribed services and to

keep the plan of care updated and cost-efficient

(2,518). Contact between the S/HMO case manager

and the member or the member’s family is often

frequent during the first 2 to 3 weeks of a care plan

until the plan is fully implemented. Once long-term

care services are in place and working well, case

managers telephone members and/or their families

once a month to once every 3 months to monitor

their health status and care needs. At Medicare Plus

II, case managers do most of their routine monitor-
334 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

ing by telephone and make a home visit every 3

months. At Seniors Plus, most monitoring is done by

long-term care providers (e.g., home health aides,

nursing supervisors, adult day center staff), who

alert the S/HMO case manager if changes occur. At

SCAN Health Plan, case managers make monthly

home visits to all members with service plans.

According to one commentator, the S/HMO case

managers also maintain telephone contact with

families who live at a distance from a S/HMO

member receiving long-term care services, to discuss the member’s health status and plan of careespecially if the member is severely impaired (422).

Case managers review selected S/HMO members’ health status and plans of care at weekly case

conferences, which also serve as a quality assurance

and utilization review for services provided under

the long-term care benefit package. Case managers

are also required to provide each member receiving

long-term care services with a comprehensive inhome reassessment every 6 months. Many case

managers consider the reassessment process unnecessary because their ongoing, frequent contact with

members allows them to reassess members’ health

status and modify plans of care accordingly, without

a formal reassessment (841).

Initially, all four S/HMOs chose to provide case

management to some ‘‘at-risk’ members who were

not nursing home certifiable or severely impaired

and therefore not eligible for long-term care services

but were judged by the S/HMO case managers to

need “monitoring” due to an unstable medical or

social situation (452,841). Over the course of the

demonstration, all four S/HMOs have had to cut

back on this practice because of the expense. As of

December 1987, the percentage of S/HMO members

being ‘monitored’ but not receiving long-term care

services was 4 percent at Medicare Plus II, Seniors

Plus, and SCAN Health Plan and 3 percent at

ElderPlan (2).

What is involved in “monitoring” varies from

one client to another and from one S/HMO case

manager to another, but anecdotal evidence suggests

that some S/HMO members who are being “monitored” are receiving what OTA defines as case

management. OTA does not know how many

individuals with dementia who are members of

S/HMOs are being “monitored.” As of December

1987, most Medicare Plus II and Elderplan members

who were being monitored were nursing home

certifiable, whereas at Seniors Plus and SCAN

Health Plan, most members who were being monitored were not nursing home certifiable.

Public Education

B

Each S/HMO offers health education programs to its membership

-.——— — — (422). OTA does not know whether

@

any of these programs include in-

— formation about dementia or serv- —=

ices for people with dementia.

To recruit members, the S/HMOs emphasized that

they were designed to keep people healthy and in

their own homes. Medicare Plus II, the S/HMO most

successful in enrolling new members, combined a

direct mail campaign with group presentations and

poster displays for the community groups and

organizations that supported the S/HMO’s development. OTA does not know to what extent, if any,

these efforts and similar efforts by the other S/HMOs

included information about dementia or about the

potential value of the S/HMO model of service

delivery for people with dementia and their caregivers.

Outreach

m

S/HMOs serve only individuals

enrolled in their programs. S/HMOs

do not have outreach procedures to

identify non-SHMO members with

dementia or their caregivers who

are in need of assistance but unlikely to seek help on their own.

As discussed previously, S/HMOs use various

procedures (e.g., the initial questionnaire and annual

followups) to identify S/HMO members who may

need services. OTA does not know how often these

procedures identify S/HMO members with dementia

who need assistance but are unable to seek it on their

own. Anecdotal evidence suggests that such individuals would usually come to the attention of a S/HMO

case manager via a referral from a physician, a

service provider, or a family member or friend of the

individual (422).

All four S/HMOs use case-finding mechanisms in

hospitals to identify S/HMO members whose conditions may require long-term care services. Medicare

Plus II and Seniors Plus train personnel in hospitals,

nursing homes, and home care agencies to identify

such individuals and refer them to the S/HMO case
Chapter 8--Agencies That Might Constitute a Uniform NationalLinking System ● 335

managers (452). ElderPlan and SCAN Health Plan

involve their case managers in discharge plannin g at

the hospitals with which they have contracts. It is

important to note, however, that case-finding mechanisms in hospitals are of little value to people with

dementia who are not hospitalized.

Role in Allocating Services and Funding

S/HMOs control the allocation of all the health

care and long-term care services included in the

S/HMOs’ benefit package. All allocation decisions

are made in the context of the S/HMOs’ prospectively determined, capitated budget, in which there

are incentives to control the utilization and costs of

services.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, S/HMOs offer several advantages:

●

●

●

●

By providing or contracting for and arranging

many of the acute and long-term care services

needed by their members, S/HMOs eliminate

for their members who receive these services

many of the problems in locating and arranging

services that are the topic of this OTA report.

S/HMOs provide comprehensive in-home assessments by case managers (typically registered nurses or social workers) to members who

case managers think will require long-term care

services.

S/HMOs provide their elderly members receiving long-term care services with ongoing case

management. This includes care planning, coordinating and arranging services, monitoring

services, and periodically reassessing the individual’s needs. In addition, S/HMOs provide

case management in the form of monitoring to

some other members who case managers think

are at risk.

S/HMOs build on the concept of HMOs, and it

is possible that some of the-existing HMOs in

this country could be used as a basis for

developing more S/HMOs.

Despite these advantages, there are significant

drawbacks to designating S/HMOs--as they are

currently operating-to constitute a national linking

system for people with dementia. One obvious

drawback is that there are only four S/HMOs at

present. On the other hand, if reimbursement were

available through Medicare or other funding sources,

HMOs and other agencies would be likely t o

establish S/HMOs. A second drawback is that

S/HMOs serve only their members, and some people

with dementia might not be able to join a S/HMO.

All but one of the four existing S/HMOs has at

various times queued applicants to maintain an

acceptable case mix of impaired and unimpaired

enrollees. This mechanism may keep some moderately and severely impaired individuals with dementia from joining. Furthermore, S/HMOs serve elderly people exclusively, and some people with

dementia are not elderly.

Another problem is that although S/HMOs provide case management for members who are receiving long-term care services, some S/HMO members

with dementia--especially members with mild or

moderate dementia-are not likely to receive longterm care services and therefore may not receive

case management. The process by which S/HMO

case managers decide which S/HMO members will

receive long-term care services is intended to target

the services to the people who are most impaired and

therefore most in need of services. Although targeting services to the most impaired individuals maybe

entirely appropriate, an effective system to link

people with dementia to services, including the case

management component, must be available to patients and their families throughout the course of the

patient’s illness. The existing S/HMOs do “monitor’ some members who are not so impaired as to be

nursing home certifiable, but these individuals constitute only 1 to 3 percent of all S/HMO members.

Lastly, the existing S/HMOs provide little, if any,

public education about dementia or about potentially

beneficial services for people with dementia and

little outreach, except case finding procedures for

hospitalized S/HMO members. The extent to which

S/HMOs provide their members with information

about and referrals to non-S/HMO services in the

community is unclear, but providing such information and referrals is clearly not one of the primary

functions of S/HMO case managers. If S/HMOs

were designated to constitute a national linking

system for people with dementia, their public

education, outreach, and information and referral

activities would have to be expanded.

It is important to keep in mind that the S/HMO is

an experiment, and components of the S/HMO

model may hold more promise than the specific
336 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

current implementation of the model in meeting the

long-term care needs of the elderly, in general, and

of people with dementia, in particular. The S/HMO

model is an important demonstration of what HMOs

might do in the area of long-term care if Medicare

reimbursement were increased specifically for longterm care services.

ON LOK SENIOR HEALTH

SERVICES

On Lok Senior Health Services is an organization

that plans, coordinates, and provides case management and comprehensive health care, long-term

care, social, and other services for about 300 very

impaired and frail older adults in the ChinatownNorth Beach area of San Francisco (639). All of On

Lok’s clients have been certified by California’s

Medicaid program, Medi-Cal, as needing intermediate or skilled nursing home care. Without the

services provided by On Lok, many of them would

be unable to continue residing in the community

(28).

OTA has included On Lok in its analysis of

agencies that might constitute a national system to

link people with dementia to services because On

Lok’s comprehensive, consolidated service program

exemplifies a model of service delivery that eliminates for its clients the problems in locating and

arranging services that are the focus of this OTA

report.

The On Lok model, in which a single organization

provides or contracts for virtually all the health care

and health-related services its clients need, can be

contrasted with the more traditional model of case

management and service delivery in which a case

manager refers individuals who need health care,

long-term care, social, and other services to agencies

and individual service providers in the community

(639). The On Lok model is similar to the social

health maintenance organization (S/HMO) model

discussed in the previous section of this chapter in

that it provides services to voluntarily enrolled

individuals in exchange for a fixed per capita

payment, but On Lok provides a wider range of

long-term care, social, and other services than

S/HMOs provide. Another difference between On

Lok and S/HMOs is that S/HMOs serve a full

spectrum of healthy and impaired people overage 65

(3), whereas On Lok serves only severely impaired

adults over age 55.

Overview of the Agency

On Lok’s program began in 1972 and has

expanded over the years. In 1972, On Lok received

a 3-year research and demonstration grant from the

Administration on Aging to establish an adult day

health center (633,940). In 1975, On Lok got another

3-year grant from the Administration on Aging, this

time to expand its adult day health program and to

provide a variety of other services (e.g., in-home

chore services, home-delivered meals, and housing

assistance)--all of which were to be delivered or

supervised by a multidisciplinary team (634). In

1978, On Lok got a 4-year grant from the Office of

Human Development Services in the U.S. Department of Health and Human Services to plan and

implement a comprehensive, consolidated, longterm care program for dependent adults (635).

From 1979 to 1983, On Lok operated as a

Medicare demonstration program with funding

through Medicare waivers; during that time, On Lok

received per capita payments for the care of its

clients from Medicare, but the payments were based

primarily on the costs that On Lok incurred (942). In

1983, On Lok assumed full financial risk for

providing all health care and health-related services

for its clients in exchange for a fixed per capita

payment. On Lok has both Medicare and Medicaid

waivers to allow the provision of comprehensive

services and for its risk-based financing system.

Currently, On Lok operates three adult day health

centers. These adult day health centers are open 7

days a week and are the primary setting in which On

Lok’s clients receive services. On Lok also has a

home health care department that provides in-home

services, including home health care, personal care,

hospice, and respite care for On Lok clients who

need these services (639). Through its adult day

health and home care programs, On Lok has the

capacity to monitor any client on a 24-hour basis.

About three-quarters of On Lok’s clients live

alone (28,639). Many of them live in congregate

housing provided by organizations affiliated with

On Lok. Such housing includes the 54-unit On Lok

House, which is subsidized by the U.S. Department

of Housing and Urban Development, and a 35-unit

single room occupancy hotel, which is privately

funded. For some clients, On Lok arranges housing

in private residences.
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 337

Although On Lok’s goal is to enable its clients to

continue residing in the community, On Lok arranges and pays for inpatient hospital care or nursing

home care for its clients who need either type of care

(639,942). On Lok has contracts with local hospitals

and nursing homes to provide the needed care, but

On Lok retains responsibility for its clients who are

hospitalized or in a nursing home. On Lok’s

physicians manage the care of these clients, and

other On Lok staff members visit the clients

regularly to monitor their care (639, 942). On Lok

clients who are in a nursing home usually continue

to attend On Lok’s adult day health centers 1 or 2

days a month (639).

As mentioned earlier, On Lok has operated on a

risk-based financing model since 1983 (636,639).

On Lok receives a fixed, per capita payment for each

client. The payment is received from Medicare,

Medi-Cal, and/or the client (depending on whether

the client is eligible for Medicare and Medi-Cal).

When the cost of services is higher than the payment

On Lok receives, On Lok absorbs the loss. When the

cost of services for an individual client is higher than

the payment On Lok receives, On Lok places the

excess revenue in a risk reserve fund to pay for cost

overruns (28).

For fiscal year 1988, On Lok received an average

monthly payment of $2,156 per client (28). Most of

On Lok’s clients are eligible for Medicare, and for

these clients Medicare pays 36 percent of the per

capita payment to On Lok; the remaining 64 percent

is paid either by Medi-Cal (for clients who are

eligible for Medi-Cal) or by the client. Clients who

are unable to pay for part or all of their portion of the

payment due to special family circumstances maybe

eligible for “scholarships” through a United Way

allocation (639). As of the last quarter of fiscal year

1987, Medicaid payments accounted for about

two-thirds of On Lok’s $7.2 million annual budget;

Medicare payments accounted for just under onethird, and other sources, including clients and the

United Way, made up the remainder (640,780).

Efforts to expand On Lok’s model of communitybased long-term care to other areas of the country are

underway. In the Omnibus Budget Reconciliation

Act of 1986 (Public Law 99-509), Congress authorized the Health Care Financing Administration to

grant On Lok-type waivers to as many as 10

replication sites. In 1987, the Robert Wood Johnson

Foundation committed $4.2 million in startup funds

for six On Lok replication sites and gave On Lok

$1.6 million to provide technical assistance to

prospective replication sites (638). In 1987, the

Hartford Foundation pledged an additional $600,000

to On Lok to provide technical assistance in the

replication project (637).

Nearly 180 organizations expressed interest in

participating in the On Lok replication project. Six

replication sites were selected in 1987: the East

Boston Neighborhood Health Center in Boston,

Massachusetts; Beth Abraham Hospital in Bronx,

New York; Providence Medical Center in Portland,

Oregon; the Richland Memorial Hospital in Columbia, South Carolina; Bienvivir Senior Health Services in El Paso, Texas; and the Community Care

Organization in Milwaukee, Wisconsin.

On Lok continues to work with other sites

interested in participating in the replication effort.

Who Is Served

As noted earlier, On Lok currently serves a

population of about 300 severely impaired and frail

older adults (3). To be eligible for On Lok services,

individuals must meet the following criteria:

. be 55 years or older,

● reside in On Lok’s 3.5-square-mile catchment

area in northeast San Francisco, and

. be certified by Medi-Cal as requiring intermediate or skilled nursing home care (639).

During the first 2 years of On Lok’s operation as

a Medicare demonstration project, the application of

these criteria eliminated over 80 percent of all

referrals (941), and On Lok had a difficult time

securing an adequate number of clients. Other

reasons for On Lok’s difficulty in securing clients

included the inability of many severely impaired

elderly people to seek help from On Lok on their

own, the unwillingness of some physicians to refer

their patients to On Lok and thus relinquish control

of the patients, and the reluctance of many elderly

people to change their health care arrangements

unless motivated to do so by the development of an

acute illness (941). On Lok has found that securing

an adequate number of clients requires continuing

efforts to educate the community about On Lok’s

services and advantages for potential clients (28).

According to a client profile published in 1988,

the average On Lok client is 81 years old and has five

serious medical conditions (639). About 58 percent
338 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

of On Lok’s clients are female, and 42 percent are

male. More than 80 percent of On Lok’s clients are

of Chinese descent; 4 percent are Italian; 2 percent

are Filipino; and the rest are of other backgrounds

(640). On Lok clients’ average monthly income is

$535; 68 percent receive Supplemental Security

Income (640). As noted earlier, about 75 percent of

On Lok’s clients live alone, either in their own

homes or in congregate housing. The other 25

percent live with others in the community. About 70

percent of clients require assistance with bathing, 68

percent with home care, 64 percent with cooking,

and 51 percent with grooming and hygiene (639).

Many On Lok clients have cognitive impairments.

According to On Lok’s figures, 85 percent have

short-term memory problems, and 80 percent have

long-term memory problems (640). Thirty-eight

percent have a diagnosis of a mental disorder.

Linking Functions

Information and Referral

Ixl On Lok’s primary objective is the

provision of comprehensive health

care, long-term care, social, and

other services to its own severely

~

impaired clients. On Lok is not

 currently oriented toward providing

information and referrals for the general public.

Case Management

All of On Lok’s clients receive

case management. Each person referred to On Lok is assessed by a

multidisciplinary team that includes

a physician or nurse practitioner, a

social worker, a nurse, physical and

occupational therapists, and others (942). If warranted, the assessment may also involve a psychiatrist and other medical specialists. Following a

comprehensive assessment, a representative from

the State Medicaid office certifies or declines to

certify the individual as needing intermediate or

skilled nursing home care (639).

If an individual is certified as needing intermediate or skilled nursing home care and meets On Lok’s

other eligibility criteria, he or she is accepted into On

Lok’s program. On Lok’s clients receive ongoing

case management by On Lok’s multidisciplinary

team. The case management includes the development of a plan of care by the multidisciplinary team

that assessed the client, and the subsequent coordination, arrangement, and monitoring of all the health

care, long-term care, social, and other services that

the client receives (942). It also includes the

reassessment of each client at regular intervals. Most

clients are reassessed every 3 months, although

clients whose conditions are considered stable are

reassessed less frequently (e.g., every 6 months).

Public Education

To OTA’s knowledge, On Lok

I’631 does not provide information for the

.—.— — —— general public about dementia or

*

services for people with dementia.

—. As noted earlier, On Lok has found

\

‘i\/ 

——. —

U that securing an adequate number of

clients requires continuing-efforts to educate the

community about On Lok’s services (28). To inform

the community about its services, On Lok sponsors

public service announcements over the local media,

places ads on buses, and participates in an annual

health fair in the Chinatown area of San Francisco

(940). On Lok’s staff also participate in local and

national conferences and meetings, where they

present information about On Lok’s experience with

case management, health care financing, and alternative long-term care service delivery systems

(28,940).

Outreach

~

Typically, On Lok serves clients

Izll who have been referred by various

sources, including families, physicians, hospital discharge planners,

other community agencies, and family associations (28). A few referrals have resulted-from On Lok’s participation in a

local group called the Coalition of Agencies Serving

the Elderly. Recently, On Lok’s social workers have

been visiting local apartment houses and public

housing complexes to reach isolated, elderly people

who might benefit from On Lok’s services, but are

unlikely to learn about the services through On

Lok’s community education efforts or to be referred

to On Lok by other sources.

Role in Allocating Services and Funding

Unlike most of the other agencies discussed in this

chapter, On Lok controls the allocation of all health

care, long-term care, social, and other services for its

clients. All services for each client are planned and
Chapter 8--Agencies That Might Constitute a Uniform National Linking System ● 339

Photo credit: On Lok Senior Health Services

Recently, On Lok’s social workers have been visiting local

apartment buildings and public housing complexes to

reach isolated, elderly people who might benefit from On

Lok’s services but are unlikely to contact the agency on

their own or to be referred to On Lok by another source.

coordinated by On Lok’s staff and directly provided

by On Lok’s multidisciplinary team, by authorized

consultants, or by contractors (639).

Summary

As an agency that might be designated to serve as

the basis of a national system to link people with

dementia to services, On Lok offers several positive

features:

By providing virtually all the health care,

long-term care, social, and other services that

are needed by its clients, On Lok eliminates

problems they might otherwise have in locating

and arranging services.

●

●

●

On Lok provides a comprehensive, multidisciplinary assessment for the individuals who are

referred to it.

On Lok provides ongoing case management,

which includes care planning, coordinating and

arranging services, monitoring services, and

periodically reassessing the individual’s needs.

On Lok has the capacity to serve individuals on

a 24-hour basis.

Although On Lok essentially eliminates for its

clients the problems in locating and arranging

services that are the focus of this OTA report, the On

Lok model is not an appropriate model to use as the

basis of a national system to link people with

dementia to services. As currently structured, the On

Lok model is intended to provide case management

and comprehensive services to a small population of

severely impaired and frail older adults who have

been certified as requiring intermediate or skilled

nursing care. The On Lok model is not intended to

provide information and referrals or case management for people who are less severely impaired (e.g.,

people in the early and middle stages of dementia) or

for their caregivers.

Clearly, On Lok is an effective service system for

its clients, and the large number of organizations

nationwide that expressed an interest in participating

in the On Lok replication program attests to the

enthusiasm many service providers feel about this

innovative model of service delivery. Moreover,

there is little doubt that On Lok’s clients with

dementia are receiving the care they need. To

expand On Lok’s functions to include providing

information and referrals and case management for

people with dementia who are not as severely

impaired as On Lok’s current clients or who do not

need the comprehensive services On Lok provides,

would require a significant change in direction and

priorities for the organization, possibly to the

detriment of the model service system it has created.

ADULT DAY CENTERS

Adult day centers are community organizations

that provide a range of health care, social, and other

services to small groups of functionally impaired

adults in group settings during specified hours of the

week. By providing services in a group setting for

these functionally impaired adults, adult day centers

also give the individuals’ primary caregivers a

temporary respite from the demands of caregiving.
340 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

The National Institute on Adult Daycare, a membership organization composed of professionals in the

field of adult day care, has estimated that as of 1989

there were at least 2,500 adult day centers in the 50

States, the District of Columbia, and Puerto Rico

(940). Most of the centers are located in cities and

other densely populated areas (488).

OTA has included adult day centers in its analysis

of agencies that might constitute a national system

to link people with dementia to services because

many adult day centers serve people with dementia,

and anecdotal evidence suggests that the staff of

some of these centers have come to be regarded as

local experts on what services are beneficial for

people with dementia and their caregivers and where

such services can be found. As a result, some health

care and social service professionals, service providers, and family caregivers turn to them for information and referrals for people with dementia. Furthermore, the Robert Wood Johnson Foundation is

currently sponsoring a demonstration project in

which the goal is to create a comprehensive system

of care for demented people and their caregivers that

relies on adult day centers to coordinate the care

(717).

Overview of the Agencies

Adult day centers were established in the United

States as the result of a grassroots movement to

develop services that would enable fictionally

impaired adults to remain in their own homes rather

than be institutionalized (879). Although a small

number of adult day centers were established before

1970, most have been established since then. In part,

because of their grassroots origins, adult day centers

vary considerably with respect to the organizations

with which they are affiliated, the settings in which

they operate, the content and structure of their

programs, and the clientele they serve (879). Adult

day centers are not subject to Federal regulation,

although some adult day centers provide services

that are reimbursed by Medicaid or Medicare, and

those services are subject to Federal regulation

(831). The lack of Federal regulation contributes to

the variation among centers.

In 1979, the National Council on the Aging

established the National Institute on Adult Daycare

to open communication among adult day centers

throughout the country and to coordinate activities

for the further development of adult day programs

and services (879). In 1984, the institute published

voluntary national standards for adult day centers,

and in 1988, the institute began revising the standards in an effort to reflect the special needs of

clients with Alzheimer’s disease and other dementing disorders (579).

Adult day centers vary greatly in the services they

provide. Some adult day centers provide primarily

health care services, and some centers provide

primarily social and personal care services. Most

provide some combination of social services, nursing, recreational activities, exercise, reality therapy,

personal care, and nutrition counseling (879). Although most centers do not provide their clients with

a medical evaluation, some centers can arrange for

a medical diagnosis or a second opinion for their

clients (336,940). Some centers also provide or

contract for physical therapy, speech therapy, occupational therapy, psychotherapy, and legal and

financial counseling (879). During the time clients

are at an adult day center, the center’s staff are able

to monitor their functional, psychosocial, and general health status on an ongoing basis (336,940).

Many centers also offer services for their clients’

families and other informal caregivers, such as

counseling, caregiving training, caregiver support

groups, and information about services and sources

of finding for services (606).

Some adult day centers offer services for a few

hours a day (e.g., 9 a.m. to 3 p.m. or 10 a.m. to 1

p.m.), 5 days a week (606). Other centers offer

services for a few hours a day, 2 or 3 days a week.

Still other centers offer services for part of the day

only 1 day a week. In some cases, people with

dementia who need constant supervision or who

may be upset by an interruption in their daily routine

attend an adult day program 7 days a week (940),25

but most adult day programs do not operate on a

7-day schedule, so this option is not always available

(606).

Most adult day centers are operated by private,

nonprofit agencies (879), but some are operated by

public agencies, and a few are operated by private,

for-profit agencies. Many adult day centers share

facilities with other programs. Settings for adult day
Chapter 8--Agencies That Might Constitute a Uniform National Linking System .341

centers include hospitals, churches, senior centers,

community centers, elderly housing projects, and

nursing homes. Nurses and social workers are the

most commonly reported paid professional staff of

adult day centers and often serve as a center’s

director (879). Physicians or psychiatrists may

sometimes be available as part-time consultants.

Other professionals and laypersons sometimes serve

as volunteers.

As of 1986, the average daily cost of providing

adult day services was about $31 per client (879).

The two main sources of funding for adult day

services are Medicaid and participants’ fees. Medicaid reimbursement for adult day services is available at the option of individual States; a nationwide

survey by the National Institute on Adult Daycare,

completed in 1988, found that 25 States were

providing coverage for adult day services under

Medicaid (580). People who are not eligible for

Medicaid usually pay for adult day services out-ofpocket (879). Some centers allow participants to pay

fees based on a sliding fee scale related to their

incomes (606). Additional funds may be provided by

sources such as foundation grants, individual donations, fundraising projects, and United Way (879).

Some funds are also provided by States under the

Older Americans Act, the Social Services Block

Grant, and Medicaid 2176 waivers.26 As of 1989,

proposed Federal legislation to cover adult day

services under Medicare had not been enacted

(although Medicare does sometimes pay for health

care services, e.g., physical therapy, provided by

some adult day centers) (606). Most private insurers

do not cover adult day services (879).

Who Is Served

In 1987, it was estimated that existing adult day

centers served less than 1 percent (about 4,000) of

the noninstitutionalized people with dementia in the

United States (717). As the demand for adult day

services for people with dementia increases, however, some adult day centers are modifying their

programs to accommodate clients with dementia. An

analysis of a program offered by an adult day center

in Gardena, California, that has adapted its program

to include people with dementia, concluded that

adult day centers can successfully adapt their

programs to meet the needs of adults with dementia

(126).

Many adult day centers serve a mixed clientele

with both demented and nondemented people. A

1985-86 survey by the National Institute on Adult

Daycare did not ask specifically about dementia but

did ask about client characteristics that may be

related to dementia, such as supervision needs (879).

Data from the 847 adult day centers that responded

to the survey show that 45 percent of their clients

required supervision, and 20 percent required constant supervision.

One example of an adult day center that serves a

mixed clientele with some demented patients is the

Woodside Senior Assistance Program in Woodside,

New York (606). This program serves about 25

persons over the age of 50, approximately 20 percent

of whom are ‘non-wandering, relatively early stage

Alzheimer’s patients.” Another example of a center

that serves a mixed clientele with some demented

patients is the Sea View Hospital and Home Adult

Day Services Program in Staten Island, New York.

This program serves adults over the age of 21, about

10 percent of whom have Alzheimer’s disease and

participate in separate as well as combined activities.

Although most adult day centers that serve people

with dementia also serve nondemented people, a

small but increasing number of adult day centers

serve only people with Alzheimer’s disease and

other dementing illnesses (605,740). Dementiaspecific adult day centers usually serve a smaller

number of participants than centers with a mixed

clientele (717). One dementia-specific center, the

Family Respite Center in Virginia, is described in

box 8-P.

The number of demented individuals who are able

to use adult day services is limited for several

reasons. One reason is that existing adult day centers

tend to be located in cities or other densely populated

areas (488). People with dementia who do not live

near a center may be unable to attend because they

lack transportation or are unable to commute to the

center because of distance. One commentator has

noted that some people with dementia become

anxious and agitated during long commutes (488).

~enters that receive Medicaid funds tend to have a health care onentatioq whereas centers that rely on Social Semices Block Grant funds tend to

have a social services orientation (824).
342 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Box 8-P—The Family Respite Center in Falls Church, Virginia

The Family Respite Center is a nonprofit adult day center in Falls Church, Virginia, that has been serving

demented people and their caregivers since 1984. The center occupies two large rooms with adjoining bathrooms

and kitchen facilities in a local church. It operates from 7:30 a.m. to 5:30 p.m. on weekdays and serves a maximum

of 20 clients each day. The center has offered in-home respite care since March 1988 on an hourly and overnight

basis.

Funding for the Family Respite Center comes from private donations and clients’ fees. Four clients are eligible

for Social Services Block Grant funds, and two participants attend on scholarships, The local AAA funds, the meal

component of the program and cooperates with other community agencies to provide transportation to the center.

Clients are referred to the Family Respite Center by various sources that include physicians, hospitals, the

Department of Social Services, the AAA, community groups such as the Alzheimer’s Association, the American

Association of Retired Persons, local churches, private home care agencies, and the Madison Adult Day Care Center

operated by Arlington County, Virginia.

The Family Respite Center offers a comprehensive program of therapeutic physical and social activities to

maintain or improve the physical and mental abilities of demented clients. Each participant is under the care of his

or her family doctor, who is kept informed of the patient’s status. In addition to informally monitoring each

participant’s behavior and health, the center reassesses each participant’s functional status every 3 months. The

center’s medical director is a neurologist who is available to consult with both staff and family caregivers. The

center also offers education programs for caregivers, volunteers, and service providers and conducts a support group

twice a month for family caregivers.

The Family Respite Center does serve people with dementia who are incontinent, who may be disruptive, or

who have a history of combativeness. The center also serves people with dementia without immediate family to care

for them, providing that they have friends or other individuals who can transport them to the center and provide other

services needed to enable them to reside in the community.

Having acquired a reputation via the grapevine as a knowledgeable source of information and referrals, the

Family Respite Center receives an average of two inquiries a day from families seeking information about

Alzheimer’s disease and appropriate services for a family member. Referrals to other services are based on the

director’s knowledge of local resources and of the experiences of other clients. No formal recommendations are

made, and clients are encouraged to evaluate all services before using them.

SOURCE: L. Noyes, director, Family Respite Center, Inc., Falls Church, VA, personal communications, Apr. 12, 1988.

Another reason the number of demented individu- excluded people with unmanageable incontinence;

als who are able to use adult day centers is limited 30 percent reported that they had excluded people

is that most centers have eligibility criteria that

exclude certain potential clients. Eligibility criteria

vary from center to center (336,606,879,940). Some

centers serve all adults over the age of 21 who meet

other spectified criteria, whereas others serve only

those over the age of 55 or 65. Some centers restrict

eligibility to people from certain geographic areas;

others impose no geographic restrictions. Some

centers restrict eligibility on the basis of functional

impairment, and other adult day centers serve people

with severe functional impairments (304,690).

Eligibility criteria that exclude people who are

incontinent, behaviorally disruptive, or combative

are likely to exclude some people with dementia. In

response to the 1985-86 survey of 847 adult day

centers by the National Institute on Adult Daycare,

35 percent of the centers reported that they had

who were behaviorally disruptive; and 12 percent

reported that they had excluded people who were

combative (879). Five percent of the 847 centers

reported that they had excluded people they considered “too confused, ” and 5 percent reported that

they had excluded people who needed constant

supervision. Many of the 847 responding centers

indicated that decisions about whether to allow

individuals to participate in their programs were

often made on a case-by-case basis, depending on

factors such as the severity of an individual’s

functional impairment and the compatibility of an

individual’s needs with those of other clients.

Even some dementia-specific adult day centers

have eligibility criteria that exclude certain people

with dementia. The Adult Day Services Program of

the Hebrew Home for the Aged in the Bronx, New
Chapter 8-Agencies That Might Constitute a Uniform National Linking System ● 343

York, serves people aged 55 or over with a diagnosis

of Alzheimer’s, multi-infarct dementia, or Parkinson’s disease; the program does not accept people

with unmanageable incontinence or wandering behavior (606). In contrast, another dementia-specific

program, the Alzheimer’s Day Care Program of

Morning side House in the Bronx, New York, admits

people of all ages and does accept persons who are

incontinent (606).

Some adult day centers do not serve people with

dementia who live alone and do not have a family or

other caregiver to supervise them when the center is

closed (488,606). The following anecdote illustrates

how the staff of one adult day center worked with a

local church to enable a client with Alzheimer’s

disease who had no family caregiver to remain in the

community.

Paul, who suffers from Alzheimer’s disease, lives

alone and has no immediate family to look after him.

He is a member of a local church, however, and

church members have taken an interest in his

well-being. Some time ago, with the help of church

members, Paul was enrolled in an adult day program.

Steve, a young man who is a member of Paul’s

church, agreed to transport Paul from his apartment

to the adult day center.

At one point, the local adult protective services

agency became concerned about Paul’s safety during

the hours he wasn’t at the adult day center. Adult

protective services staff were particularly worried

that Paul might wander at night and recommended

that he be placed in a nursing home. The adult day

center staff objected to this recommendation, because their experience with Paul indicated that once

Paul fell asleep, he slept soundly. Steve indicated

that he was willing to remain overnight with Paul

when Paul was restless, anxious, or unable to fall

asleep easily. The staff at the adult day center were

convinced that with Steve’s assistance, Paul was

capable of remaining in the community.

Eventually, the adult protective services agency

took Paul’s case to court. The adult day center staff

were able to convince the court that Paul was capable

of functioning safely in the community. The adult

day center staff are now trying to find a new

apartment for Steve and his family that would also

accommodate Paul (617).

As this anecdote suggests, adult day center staff are

often highly dedicated people who become very

involved in the well-being of their clients and are

willing to “go the extra mile” to help their clients

get the services they need.

Linking Functions

Information and Referral

[51 Although adult day centers generally have no formal mechanisms

for providing their clients and clients’ families with information and

referrals to other community agen-

~ cies, many adult day centers d o

.provide clients and their families with information

and referrals on an informal basis. Some centers also

refer their clients to local AAAs, Alzheimer’s

Association chapters, or other agencies for information and referrals to community services (485,

617,940).

Adult day centers have no formal mechanisms for

providing people other than their clients and clients’

families with information and referrals to community services, but staff members at some adult day

centers that serve people with dementia do provide

information and referrals to people other than their

clients on an informal basis (485,517,940). These

staff members are likely to learn from various

sources about services that are used by people with

dementia and their caregivers. They may hear about

services their clients have used or learn about

services through their efforts to help their clients

find other sources of assistance. Some staff members

at adult day centers come to be perceived as local

experts on services for people with dementia, and

other health care and social service providers may

call them for information and advice. Families of

people with dementia may also be referred to them,

sometimes for adult day care, but often for information about other community services.

Case Management

Adult day centers generally do Iii!!a IL

1

r=

families provides staff members an

opportunity to informally assess the

Jq-]1 not provide their clients with formal

gr case management, but frequent per-

- sonal contact with clients and their

needs of clients and their families, suggest appropriate services, and help the family locate and arrange

services (485,617,940). Such staff members generally have limited time and resources for formal

followup, but clients and their families are likely to

report back informally on the success or failures of

referrals they have received.
344 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

As noted earlier, the Robert Wood Johnson

Foundation is sponsoring a $7.5 million project, the

Dementia Care and Respite Services Demonstration,

with the goal of creating a comprehensive system of

care for demented people and their caregivers in

which adult day centers serve as the central coordinating element (717). In 1988, the foundation, in

conjunction with the Alzheimer’s Association and

the Administration on Aging, selected 19 adult day

centers nationwide to participate in the demonstration project (712). Each adult day center participating in the project will receive grants of up to

$300,000 over a 4-year period to enhance its services

for dementia clients and their caregivers. The Robert

Wood Johnson Foundation has found that adult day

centers “become ‘community centers’ for providing

and facilitating the range of services needed by

people with dementia and their caregivers.” Each

center participating in the demonstration project is

required, among other things, to ‘‘develop a casecoordinated plan for each client and caregiver to

assure access to requested services through direct

provision or referral to other community agencies. ”

The results of the demonstration will have implications for the role of adult day centers in providing

case management, respite, and other services for

people with dementia and their caregivers.

Public Education

a

Adult day centers promote their

own services and adult day services

——-v—— in general in various ways, includ-

——

*

ing advertising in local newspapers,

\\ —\ telephone directories, and commu-

.=

nity publications and participating

in community forums, information fairs, and similar

public events. Anecdotal evidence indicates that

some dementia-specific adult day centers use similar

methods to educate the public about Alzheimer’s

disease and related dementias and about adult day

care as a potentially beneficial service option for

people with dementia (485,617).

Outreach

Most adult day centers do not

have sufficient staff or resources to

conduct active outreach to identify

people who might benefit from their

services but are unlikely to be

referred or to contact an adult day

center on their own (617). On the other hand, some

adult day centers send staff to visit elderly housing

facilities in the community to seek out people who

would benefit from an adult day program (336,940).

Role in Allocating Services and Funding

Adult day centers do not control access to, or

funding for, services other than those they provide.

Summary

As agencies that might be designated to constitute

a national system to link people with dementia to

services, adult day centers offer the following

advantages:

●

●

Adult day centers that serve at least some

people with dementia may have a nurse, social

worker, or other staff member who is knowledgeable about community services for people

with dementia and is able to provide information about such services to clients of the center

and other people who contact the center.

Adult day center staff often are highly dedicated people who are very concerned about

their clients’ well-being and are often willing to

“go the extra mile” to help their clients get the

services they need.

Although adult day programs are a vital component of community-based, long-term care and provide obvious benefits for some demented adults and

their caregivers, it is unlikely that adult day centers

could serve as the basis of a national system to link

people with dementia and their families to services.

The major reason is that although adult day centers

provide information and referrals and informal case

management for their own clients, such centers

currently serve only a small percentage of people

with dementia in this country, and most adult day

centers do not have the resources to provide information and referrals or case management for people

other than their own clients. To have adult day

centers take on the task of linking demented people

and their caregivers to services would require a

significant redefinition of the centers’ institutional

mission and an infusion of additional resources.
References
References

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

Ablan, M. B., Executive Director, Area Agencies on

Aging Association of Michigan, Lansing, MI,

personal communication, July 27, 1989.

Abrahams, R., Nonnenkamp, L., Dunn, S., et al.,

“Case Management in the Social/Health Maintenance Organization,’ Generations 12(5):39-43,

1988.

Abrahams, R.B., and Leutz, W., “The Consolidated

Model of Case Management and Service Provision

to the Elderly,” Pride Institute Journal of LongTerm Care 2(4):29-34, 1983.

Abramson, J.S., “Participation of Elderly Patients

in Discharge Planning: Is Self Determination a

Reality?” Social Work 33(5):443-448, 1988.

Achorn, C., “Alzheimer’s Disease: Survey of

Programs and Activities at the State Level,” Older

American Report, prepublication copy, December

1988.

Action Committee To Implement the Mental Health

Recommendations of the 1981 White House Conference on Aging, Mental Health Services for the

Elderly: Report on a Survey of Community Mental

Health Centers, vol. 1 (Washington, DC: American

Psychological Association, 1984).

Action Committee To Implement the Mental Health

Recommendations of the 1981 White House Conference on Aging, Mental Health Services for the

Elderly: Report on a Survey of Community Mental

Health Centers, vol. 3 (Washington, DC: American

Psychological Association, 1986).

Adelman, R. C., Chairman, Geriatrics and Gerontology Advisory Committee, U.S. Department of

Veterans Affairs, “Statement,” Health Care Services for Aging Veterans, hearing before the Subcommittee on Oversight and Investigations, Committee on Veterans’ Affairs, House of Representatives, U.S. Congress, Apr. 13, 1989, Serial No.

101-8 (Washington, DC: U.S. Government Printing

Office, 1989).

Advisory Panel on Alzheimer’s Disease, ‘Report of

the Advisory Panel on Alzheimer’s Disease,” U.S.

Department of Health and Human Services, Washington, DC, 1989.

Aging Network News, “Working Together—Metro

Chicago’s VA and AAA-To Assist Chicago’s

Elderly Veterans,” Aging Network News 6(1):3-4,

1989.

Ahearn, W.E., Bayles, F., and McCartney, S.,

“Panel 2: Scope of the Problem and Needed

Reform,” Abuses in Guardianship of the Elderly

and Infirm: A National Disgrace, briefing by the

chairman of the Subcommittee on Health and

Long-Term Care, Select Committee on Aging,

12.

13.

14.

15.

16.

17.

18.

19.

20.

21.

22.

23.

24.

House of Representatives, U.S. Congress, Sept. 25,

1987, Comm. Pub. No. 100-641 (Washington, DC:

U.S. Government Printing Office, 1988).

Ahmed, I., Wohlgemuth, C., Miller, L., et al., “A

Geriatric Neuropsychiatric Inpatient Unit,” Clinics

in Geriatric Medicine, L.Z. Rubenstein, L.J.

Campbell, and R.L. Kane (eds.) (Philadelphia, PA:

W.B. Saunders, 1987).

Alter, C.F., “The Changing Structure of Elderly

Service Delivery Systems,” Gerontologist 28(1):91-

98,1988.

Alzheimer’s Association, Directory of State Alzheimer Programs and Legislation, conference materials distributed at the “Alzheimer’s Association

Public Policy Forum,” Washington, DC, Apr. 2-5,

1989.

Alzheimer’s Disease and Related Disorders Association, “Alzheimer’s Disease: Services You May

Need,” Chicago, IL, 1987.

Alzheimer’s Disease and Related Disorders Association, “National Program To Conquer Alzheimer’s

Disease,” Chicago, IL, 1987.

American Association of Retired Persons, “A

Home Away From Home: Consumer Information

on Board and Care,” Washington, DC, 1986.

American Association of Retired Persons, “Miles

Away and Still Caring: A Guide for Long-Distance

Caregivers,” Washington, DC, 1986.

American Bar Association, Commission on Legal

Problems of the Elderly, “Report to the House of

Delegates,’ approved by the House of Delegates of

the American Bar Association, San Francisco, CA,

August 1987.

American Hospital Association, “Guidelines: Discharge Planning,” Chicago, IL, 1984.

American Hospital Association, Office of the General Counsel, Legal Memorandum Discharging

Hospital Patients: Legal Implications for Institutional Providers and Health Care Professionals:

Report of the Task Force on Legal Issues in

Discharge Planning (Chicago, IL: 1987).

American Nurses’ Association, “Nursing Case

Management,” Kansas City, MO, 1988.

Amerman, E., “The Nurse/Social Worker Dyad in

Community-Based Long-Term Care,” presented at

the annual meeting of the Gerontological Association of America, San Francisco, CA, November

1983.

Amerman, E., Eisenburg, D., and Weisman, R.,

“Case Management and Counseling: A Service

Dilemma Experience From the National LongTerm Care Channeling Demonstration,” Case Management: A Critical Review, C.D Austin, J. Law,

–347–

89-150 - 90 - 12
348 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

25.

26.

27.

28.

29.

30.

31.

32.

33.

34.

35.

36.

37.

and E.A. Roberts (eds.) (Seattle, WA: University of

Washington, Pacific Northwest brig-Term Care

Gerontology Center, 1985).

AMVETS, Disabled American Veterans, Paralyzed

Veterans of America, Veterans of Foreign Wars of

the United States, “The Need Is Now: An Independent Budget by Veterans for Veterans’ programs,

Fiscal Year 1990,” Washington, DC, January 1989.

Andersen, R.M., Giachello, A.L., and Aday, L.A.,

“Access of Hispanics to Health Care and Cuts in

Services: A State-of-the-Art Overview,” Public

Health Reports 101(3):238-252, 1986.

Annas, G.L., and Glantz, L.H., “The Right of

Elderly Patients To Refuse Life-Sustaining Treatment,” Milbank Quarter/y 64(Suppl. 2):95-162,

1986.

Ansak, M.L., Executive Director, On Lok Senior

Health Services, San Francisco, CA, personal communications, May 26, 1989, and July 24, 1989.

Applebaum, P.S., and Roth, L.H., “Competency To

Consent to Research,’ ‘Archives of General Psychiatry 39:951-958, 1982.

Applebaum, R.A., “Lessons From the National

Channeling Demonstration,” Generations 12(5):

58-61, 1988.

Applebaum, R.A., “What’s All This About Quality?” Generations 13(1):5-7, 1989.

Applebaum, R.A., Atchley, S.J., McGinnis, R., et

al., A Guide to Ensuring the Quality of In-Home

Care: Final Report of Ohio’s Quality Assurance

Project (Oxford, OH: Miami University, April

1988).

Applebaum, R.A., and Christianson, J., “Using

Case Management To Monitor Community-Based

Long-Term Care,” Quality Review Bulletin 14(7):

227-231, 1988.

Applebaum, R.A., and Wilson, N.L., “Training

Needs for Providing Case Management for the

Imng-Term Care Client: Lessons From the National

Channeling Demonstration,” Gerontologist 28(2):

172-176, 1988.

Applegate, W.B., Akins, D.E., and Elam, J.T., “A

Geriatric Assessment and Rehabilitation Unit in a

Rehabilitation Hospital,’ Clinics in Geriatric Medicine, L.Z. Rubenstein, L.J. Campbell, and R.L.

Kane (eds.) (Philadelphia, PA: W.B. Saunders,

1987).

Areen, J., “The Legal Status of Consent Obtained

From Families of Adult Patients To Withhold or

Withdraw Treatment,” Journal of the American

Medical Association 258(2):229-235, 1987.

Arizona Advisory Committee on Alzheimer’s Disease and Related Disorders, Final Report of the

Arizona Advisory Committee on Alzheimer’s Disease and Related Disorders (Phoenix, AZ: Arizona

38.

39.

40.

41.

42.

43.

44.

45.

46.

47.

48.

49.

50.

51.

Department of Economic Security, Aging and Adult

Administration, Oct. 1, 1989).

Aronson, M. K., “Caring for the Dementia Patient,”

Understanding Alzheimer’s Disease, M.K. Aronson

(cd.) (New York, NY: Charles Scribner & Sons,

1988).

Aronson, M.K., Levin, G., and Lipkowitz, R., “A

Community-Based Family/Patient Group Program

for Alzheimer’s Disease,” Gerontologist 24(4):

339-342, 1984.

Aronson, M.K., and Lipkowitz, R., “Senile Dementia, Alzheimer’s Type: The Family and the Health

Care Delivery System,” Journal of the American

Geriatrics Society 29(12):568-571, 1981.

Arras, J.D., “A Philosopher’s View,” Generations

11(4):65-66, 1987.

Auerbach, M., Taylor, M., and Marosy, J.P., “Home

Care Challenge: Care of the Vulnerable Elderly,”

Caring 4(4):38-42, April 1985.

Austin, C. D., “Case Management: Options and

Opportunities,” Health and Social Work 8(l);16-

30, 1983.

Austin, C.D., “Case Management and Long-Term

Care,” Improving Access for Elders: The Role of

Case Management--Conference Proceedings (Seattle, WA: University of Washington, Institute on

Aging, 1986).

Austin, C.D., “Summary of Findings: Description

of Regional Study,” Improving Access for Elders:

The Role of Case Management--Conference Proceedings (Seattle, WA: University of Washington,

Institute on Aging, 1986).

Austin, C. D., “History and Politics of Care Management,” Generations 12(5):7-10, 1988.

Austin, C.D., Borgatta, E.F., and Roberts, E.A.,

Improving Access for Elders: The Role of Case

Management--Final Report (Seattle, WA: University of Washington, Institute on Aging, January

1987).

Austin, C.D., Law, J., Roberts, E. A., et al., Case

Management: A Critical Review (Seattle, WA:

University of Washington, Pacific Northwest LongTerm Care Gerontology Center, 1985).

Austin, C.D., and Ryan, R., “Summary of Findings:

Highlights,” Improving Access for Elders: The

Role of Case Management--Conference Proceedings (Seattle, WA: University of Washington,

Institute on Aging, 1986).

Ballard, E.L., and Gwyther, L.P., In-Home Respite

Care: Guidelines for Training Respite Workers

Serving Memory Impaired Adults (Durham, NC:

Duke University Center for the Study of Aging,

1988).

Balmer, D.L., Manager, Division of Administrative

Compliance, Illinois Department on Aging, “The

Illinois Department of Aging Quality Assurance
References .349

program,” presented to “The National Conference

on Home Care Quality,” sponsored by the Office of

the Assistant Secretary for Planning and Evaluation,

U.S. Department of Health and Human Services,

Washington, DC, June 2, 1988.

52. Bang, A., Morse, J.H., and Carnpion, E.W., “Transition of VA Acute Care Hospitals Into Long-Term

Care,’ Older Veterans: Linking VA and Community

Resources, T. Wetle and J.W. Rowe (eds.) (Cambridge, MA: Harvard University Press, 1984).

53. Barclay, L.L., Weiss, E. M., Mattis, S., et al.,

“Unrecognized Cognitive Impairment in Cardiac

Rehabilitation Patients,” Journal of the American

Geriatrics Society 36(1):22-28, 1988.

54. Barnes, M.M., Executive Director, Alzheimer’s

Association Palm Beach Chapter, Inc., Palm Beach,

FL, personal communications, Sept. 8, 1989, and

Apr. 27, 1990.

55. Barringer, M., Clinical Coordinator, Southern Illinois University School of Medicine, Alzheimer’s

Center, Springfield, IL, personal communications,

Feb. 2, 1988, Aug. 19, 1988, and Nov. 5, 1988.

56. Barry, P. P., “Management of Dementia: A Geriatrician’s Perspective,’ Journal of the American Geriatrics Society 33(6):382, 1985.

57. Bass, D.M., Senior Research Associate, Benjamin

Rose Institute, Cleveland, OH, personal communication, Sept. 13, 1988.

58. Bastida, E.B., “Old Age in Small Towns in

Mid-America,” Aging Network News 4(7):8,16,

1987.

59. Beatrice, D.F., “Case Management: A Policy Option for brig-Term Care,” Reforming the LongTerm Care System: Financial and Organizational

Options, J.J. Callahan and S.S. Wallack (eds.)

(Lexington, MA: Lexington Books, D.C. Heath &

Co., 1981).

60. Beitler, D., Director, Professional Development

Institute, American Association of Homes for the

Aging, Washington, DC, personal communication,

Mar. 22, 1989.

61. Benjamin, A.E., Lindeman, D.A., Budetti, P.P., et

al., “Shifting Commitments to Long-Term Care:

The Role of Coordination,” Gerontologist 24(6) :598-

603, 1984.

62. Berg, G., Edwards, D.F., Danzinger, W.L., et al.,

‘‘Longitudinal Change in Three Brief Assessments

of SDAT,” Journal of the American Geriatrics

Society 35(3):205-212, 1987.

63. Berke, J., “Spread of Continuity Coordination,”

Coordinator 4(10):12-15, 1985.

64. Berman, S., Delaney, N., Gallagher, D., et al.,

“Respite Care: A Partnership Between a Veterans

Administration Nursing Home and Families To

Care for Frail Elders at Home,” Gerontologist

27(5):581-584, 1987.

65. Berry, J., Acting Commissioner, Administration on

Aging, U.S. Department of Health and Human

Services, “Statement,’ Departments of Labor,

Health and Human Services, Education and Related

Agencies: Appropriations for 1990, hearing before

the Subcommittee on Labor/Health and Human

Services, House Appropriations Committee, U.S.

Congress, Apr. 12, 1989 (Washington, DC: U.S.

Government Printing Office, 1989).

66. Beyer, J., Bulkley, J., and Hopkins, P., Board and

Care Report (Washington, DC: American Bar

Association, 1984).

67. Billig, N., Ahmed S.W., Kenmore, P., et al.,

“Assessment of Depression and Cognitive Impairment After Hip Fracture,’ Journal of the American

Geriatrics Society 34(7):499-503, 1986.

68. Binstock, R.H., “Title III of the Older Americans

Act: An Analysis and Proposal for the 1987

Reauthorization, Gerontologist 27(3):259-

265, 1987.

69. Binstock, R. H., Henry R. Luce Professor of Aging,

Health, and Society, School of Medicine, Case

Western Reserve University, Cleveland, OH, personal communication, July 24, 1989.

70. Bionic Health Care, Inc. v. State of Oregon

Department of Human Resources et al., Civil No.

87-0816-PA, Nov. 2, 1987.

71. Birkel, R. C., “Toward a Social Ecology of the

Home-Care Household,” Psychology and Aging

2:294-306, 1987.

72. Birkel, R. C., and Jones, C.J., ‘‘A Comparison of the

Caregiving Networks of Dependent Elderly Individuals Who Are Lucid and Those Who Are Demented,” Gerontologist 29(1):114-119, 1989.

73. Birnbaum, H., Burke, R., Swearingen, C., et al.,

“Implementing Community-Based Long-Term Care;

Experience of New York’s Long-Term Home

Health Care Program,” Gerontologist 24(4):380-

386,1984.

74. Blass, J.P., “Pragmatic Pointers on Managing the

Dementia Patient,” Journal of the American Geriatrics Society 34(7):548-549, 1986.

75. Bock D. J., Administrative Supervisor, Connecticut

Community Care, remarks to the National Council

on the Aging symposium “Case Management: Fad

or Fact?” Washington, DC, Apr. 14, 1988.

76. Boies, K. G., Chief, Research and Evaluation, Office

of Geriatrics and Extended Care, Department of

Medicine and Surgery, U.S. Veterans Administration, Washington, DC, personal communications,

Nov. 25, 1987, and Aug. 17, 1988; and Veterans

Health Services and Research Administration, U.S.

Department of Veterans Affairs, Washington, DC,

personal communications, July 18 and 26, 1989.

77. Botwinick, J., Storandt, M., and Berg, L., “A

Longitudinal, Behavioral Study of Senile Dementia
350 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

78.

79.

80.

81.

82.

83.

84.

85.

86.

87.

88.

89.

90.

91.

of the Alzheimer Type,” Archives of Neurology

43:1124-1127, 1986.

Bowen, A., program Consultant for Caregiver

Support Services, South Carolina Commission on

Aging, Columbia, SC, personal communication,

Feb. 1, 1989.

Brandeis University, Bigel Institute for Health

Policy, “The Social/Health Maintenance Organization: The First Four Years,” Waltham, MA, 1989.

Brandt, J.E., and Reichers, E.A., “The Linn County

Case Management Project: A Long-Term Care

Alternative,’ Caring 6(12):16-19, December 1987.

Brecher, C., and Knickman, J., “A Reconsideration

of Long-Term Care Policy,” Journal of Health

Politics, Policy and Law 10(2):245-273, 1985.

Bristol, L., Supervisor, Alzheimer’s Center, Nursing Service, VA Medical Center, Coatesville, PA,

personal communication, May 26, 1989.

Brody, E. M., “Parent Care as a Normative Family

Stress,” Gerontologist 25:19-29, 1985.

Brody, E.M., “The Social Aspects of Nursing

Home Care,” The Teaching Nursing Home, E.L.

Schneider, C.J. Wendland, A.W. Zimmer, et al.

(eds.) (New York NY: Raven Press, 1985).

Brody, E. M., “The Family at Risk,” Alzheimer’s

Disease Treatment and Family Stress: Directions

for Research, E. Light and B.D. Lebowitz (eds.)

(Rockville, MD: U.S. Department of Health and

Human Services, Public Health Service, Alcohol,

Drug Abuse, and Mental Health Administration,

National Institute of Mental Health, 1989).

Brody, E.M., Kleban, M.H., Johnsen, P.T., et al.,

“Work Status and Parent Care: A Comparison of

Four Groups of Women,” Gerontologist 27(2):201-

208, 1987.

Brody, E.M., Lawton, M.P., and Lebowitz, B.,

“Senile Dementia: Public Policy and Adequate

Institutional Care,” American Journal of Public

Health 74(12):1381-1383, 1984.

Brody, E.M., Saperstein, A.R., and Lawton, M.P.,

“A Multi-Service Respite Program for Caregivers

of Alzheimer’s Patients,’ draft, Philadelphia Geriatric Center, Philadelphia, PA, 1988.

Brody, S.J., and Persily, N.A., Hospitals and the

Aged: The New Old Market (Rockville, MD: Aspen

Institute, 1984).

Brostoff, P.M., ‘‘Ethical Dilemmas Facing Private

Geriatric Case Managers,” Case Management:

Guiding Patients Through the Health Care Maze,

K. Fisher and E. Weisman (eds.) (Chicago, IL: Joint

Commission on the Accreditation of Healthcare

Organizations, 1988).

Brown, T.E., Jr., Director, Office of program

Management, South Carolina Department of Health

and Environmental Control, remarks to the National

Council on the Aging symposium “Case Manage92.

93.

94.

95.

96.

97.

98.

99.

100.

101.

102.

103.

104.

ment: Fad or Fact?” Washington, DC, Apr. 14,

1988.

Brubaker, T.H., “The Long-Term Care Triad: The

Elderly, Their Families, and Bureaucracies,’ ‘Aging,

Health, and the Family, T.H. Brubaker (cd.)

(Newbury Park, CA: Sage Publications, 1987).

Buchanan, A., and Brock D. W., “Surrogate Decisionmaking for Elderly Individuals Who Are Incompetent or of Questionable Competence,” contract

report prepared for the Office of Technology

Assessment, U.S. Congress, Washington, DC, May

1987.

Buckwalter, K.C., “Applied Services Research:

Clinical Issues and Directions,” Alzheimer’s Disease Treatment and Family Stress: Directions for

Research, E. Light and B.D. Lebowitz (eds.) (Rockville, MD: U.S. Department of Health and Human

Services, Public Health Service, Alcohol, Drug

Abuse, and Mental Health Administration, National

Institute of Mental Health, 1989).

Buckwalter, K. C., Director for Research, University

of Iowa Hospital, Iowa City, IA, personal communications, Sept. 8, 1989, and Nov. 2, 1989.

Buckwalter, K. C., and Hall, G.R., “Families of the

Institutionalized Older Adult,” Aging, Health, and

Family, T.H. Brubaker (cd.) (Newbury Park, CA:

Sage Publications, 1987).

Buckwalter, K. C., Smith, M., Schafer-Nelson, T., et

al., “Mental Health of the Rural Elderly Outreach

Program: A Unique Health Care Delivery System,”

draft, University of Iowa College of Nursing, Iowa

City, IA, 1987.

Burack-Weiss, A., ‘‘Clinical Aspects of Case Management,” Generations 12(5):23-25, 1988.

California Alzheimer’s Disease Task Force, The

California Alzheimer’s Disease Task Force--Final

Report (Sacramento, CA: 1987).

California Alzheimer’s Disease Task Force, The

California Alzheimer’s Disease Task Force Report

on Insurance Coverage for Respite and Related

Care (Sacramento, CA: 1987).

California State Department of Aging, “The Linkages Program: A Service To Prevent Institutionalization: Report to the Legislature,’ Sacramento, CA,

March 1987.

California State Department of Mental Health,

Health and Welfare Agency, Regional Resource

Centers’ Operations Manual: Policies and Procedures Pursuant to the Implementation of Chapter

1658 (Sacramento, CA: March 1987).

Calkins, M.P., “Designing Special Care Units: A

Systematic Approach,” American Journal of Alzheimer’s Care and Research 2(3):30-34, 1987.

Callahan, J.J., “Single Agency Option for LongTerm Care,” Reforming the Long-Term Care Sys-
References ● 351

105.

106.

107.

108.

109.

110.

111.

1120

113.

114.

115.

116.

117.

118.

119.

120.

121.

tem, J.J. Callahan and S.S. Wallach (eds.) (Lexington, MA: Lexington Books, 1981).

Callahan, J.J., “Paying for Case Management,”

Generations 12(5):75,76, 1988.

Cambell, P., Research Associate, John Snow, Inc.,

Boston, MA, personal communication, Sept. 11,

1989.

Campion, E.W., “The Merits of Geriatric Consultation,’ Journal of the American Medical Association

257(17):2336-2337, 1987.

Campion, E.W., Bang, A., and May, M.I., “Why

Acute-Care Hospitals Must Undertake Long-Term

Care,” New England Journal of Medicine 308(2):

71-75, 1983.

Canalis, D.M., “Homemaker Home Health Aide

Attrition: Methods of Prevention,” Caring 6(4):85-

89, April 1987.

Cantor, M., Rehr, H., and Trotz, V., “Workshop II:

Case Management and Family Involvement,” Mount

Sinai Journal of Medicine 48:566-568, 1981.

Caper, P., “Defining Quality in Medical Care,”

Health Affairs 7(1):49-61, 1988.

Capitman, J.A., “Community-Based Long-Term

Care Models, Target Groups, and Impacts on

Service Use,” Gerontologist 26(4):389-397, 1986.

Capitman, J.A., Arling, G., and Bowling, C.,

“Public and Private Costs of Long-Term Care for

Nursing Home Pre-Admission Screening Program

Participants,” Gerontologist 27(6):781-787, 1987.

Capitman, J. A., Haskins, B., and Bernstein, J.,

“Case Management Approaches in Coordinated

Community-oriented Long-Term Care Demonstrations,” Gerontologist 26(4):398-404, 1986.

Capitman, J., MacAdam, M., and Yee, D., “HospitalBased Care Management,” Generations 12(5):62-

65.1988.

Carter, J.D., and Piktialis, D. S., “What To DoAbout

Mother in Milwaukee,” Business and Health 5(6):19-

20, 1988.

Caserta, M.S., Lund, D.A., Wright, S.D., et al.,

“Caregivers to Dementia Patients: The Utilization

of Community Services,’ Gerontologist 27(2):209-

214, 1987.

Cavenaugh, D., Research Specialist, National Association of Community Health Centers, Washington,

DC, personal communications, Jan. 21, 1988, and

July 26, 1989.

Chachkes, E., “A Social Worker’s View,” Generations 11(4) ;62-64,1987.

Chambers, L.W., “Promoting Long-Term Care

Quality Assurance: Strategies Used in Europe and

North America,’ Danish Medical Bulletin, Gerontology Special Supplement Series No. 5-Quality of

Long-Term Care, pp. 21-21, 1987.

Chambers, R., Director, Alzheimer’s Information

Services, Massachusetts Office of Elder Affairs,

122.

123,

124,

125.

126.

127.

128.

129.

130.

131.

132.

133.

134.

135.

136.

Boston, MA, personal communication, Nov. 22,

1988.

Chavkin, D.F., “Survey of State Approaches to

Financing Services for Patients With Dementia,”

contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC,

1986.

Chavkin, D.F., “Legislative Options for Improving

Medicaid Financing of Care and Services for

Persons With Dementia,” contract report prepared

for the Office of Technology Assessment, U.S.

Congress, Washington, DC, 1987.

Chavkin, D.F., “Government-Funded Programs To

Finance Care for Patients and Families,” Understanding Alzheimer’s Disease, M.K. Aronson (cd.)

(New York NY: Charles Scribner & Sons, 1988).

Chenoweth, B., and Spencer, B., “Dementia: The

Experience of Family Caregivers,” Gerontologist

26(3):267-272, 1986.

Cherry, D.L., and Rafkin, N.J., “Adapting Day Care

to the Needs of Adults With Dementia,’ Gerontologist 28(1):116-120, 1988.

Chiverton, P., and Caine, E.D., “Education To

Assist Spouses in Coping With Alzheimer’s Disease: A Controlled Study,’ Journal of the American

Geriatrics Society 37(7):593-598, 1989.

Christianson, J. B., “Purchase of Services by Case

Management Agencies,” Generations 12(5):19-22,

1988.

Cicirelli, V. G., “Family Relationships and Care/

Management of the Dementing Elderly,” The

Dementias: Policy and Management, M.L.M. Gilhooly, S.H. Zarit, J.E. Birren (eds.) (Englewood

Cliffs, NJ: Prentice Hall, 1986).

Cleary, P.D., and McNeil, B.J., “Patient Satisfaction as an Indicator of Quality Care,” Inquiry

25:25-36, 1988.

Clinkscale, R. M., “Evaluation of Medicaid Section

2176 Home and Community-Based Care Waivers,”

LaJolla Management Corp., Rockville, MD, December 1986.

Close, J., Training Administrator, Delaware Department of Health and Human Services, Division on

Aging, Newcastle, DE, personal communication,

1988.

Cohen, D., and Eisdorfer, C., The Loss of Self (New

York, NY: W.W. Norton& Co., 1986).

Cohen, E. S., “Autonomy and Paternalism: Two

Goals in Conflict,” Law, Medicine, and Health

Care 13(4):145-150, 1985.

Cohen, M., Tell, E., and Wallack, S., “Life Care at

Home: A Demonstration Model,” Building Affordable Long-Term Care Alternatives (Washington,

DC: National Governor’s Association, 1987).

Cohen, S.N., President, National Association of

Private Geriatric Case Managers, remarks to the
352 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

137.

138.

139.

140.

141.

142.

143.

144.

145.

146.

147.

148.

149.

National Council on the Aging symposium “Case

Management: Fad or Fact?” Washington, DC, Apr.

14,1988.

Cole, L., Griffin, K., and Ruiz, B., “A Comprehensive Approach to Working With Families of Alzheimer’s Patients,” Journal of Gerontological Social Work 9(2):27-39, 1985/86.

Collins, C., Stornmel, M., Thiele, J., et al., Michigan

State University, “Knowledge and Use of Community Services Among Family Caregivers of Alzheimer’s Patients,” supported by Grant No. 1

RO1-MM41766, ‘The Impact of Alzheimer’s Disease on Family Caregivers,’ funded by the National

Institute of Mental Health, U.S. Department of

Health and Human Services, Rockville, MD, 1989.

Collopy, B.J., “Autonomy in Long-Term Care:

Some Crucial Distinctions,” Gerontologist 28(Suppl.):

10-17, 1988.

Community Council of New York City, “Ombudservice for Home Care Clients: Project Description,” New York, NY, May 1988.

Community Service Council of Greater Tulsa,

Local Consolidation of Resources for the Frail

Elderly: Quarterly Report (Tulsa, OK: Oct. 15,

1988).

Connecticut Governor’s Task Force on Alzheimer’s

Disease, Connecticut Governor’s Task Force on

Alzheimer’s Disease: Interim Report (Hartford, CT:

January 1987).

Connecticut Governor’s Task Force on Alzheimer’s

Disease, Connecticut Governor’s Task Force on

Alzheimer’s Disease: Final Report (Hartford, CT:

January 1989).

Coons, D.H., “New Approaches in the Care of

Persons With Dementia,” A Better Life, D.H.

Coons, L. Metzelaar, A. Robinson, et al. (eds.)

(Columbus, OH: The Source for Nursing Home

Literature, 1986).

Coons, D.H., Chenoweth, B., Hollenshead, C., et al.,

“Report to Families of the Study Alzheimer’s

Disease: Subjective Experiences of Families,” Institute of Gerontology, University of Michigan,

Ann Arbor, MI, February 1983.

Cordero-Aranda, M.P., consultant, Latino Mental

Health Training Institute, Los Angeles, CA, personal communication, Dec. 15, 1988.

Corson, W., Grannemann, T., and Holden, N.,

“Formal Community Services Under Channeling,”

Health Services Research 23(1):85-98, 1988.

Costello, J., Chief, Public Information and Advocacy, Illinois Department of Aging, Springfield, IL,

personal communication, July 18, 1989.

Coughlin, T., and Liu, K., “Health Care Costs of

Older Persons With Cognitive Impairment,” Urban

Institute, Washington, DC, January 1988.

150.

151.

152.

153.

154.

155.

156.

157.

158.

159.

160.

161.

162.

163.

Coulton, C.J., Dunkle, R.E., and Chow, J. C.,

“Dimensions of Post Hospital Care Decisionmaking: A Factor Analytic Study,” Gerontologist

28(2):218-223, 1988.

Creedon, M.A. (cd.), Issues for an Aging America:

Employers and Eldercare:A BriefingBook (Bridgeport, CT: University of Bridgeport, Center for the

Study of Aging, 1987).

Cross, P. S., and Gurland, B.J., “The Epidemiology

of Dementing Disorders,” contract report prepared

for the Office of Technology Assessment, U.S.

Congress, Washington, DC, January 1986.

Cuellar, J.B., and Weeks, J.R., “Minority Elderly

Americans: The Assessment of Needs and Equitable Receipt of Public Benefits as a Prototype for

Area Agencies on Aging,” prepared for the Administration on Aging, Office of Human Development

Services, U.S. Department of Health and Human

Services, AoA Grant No. 90-A1667(01), Washington, DC, 1980.

Cummings, J.L., and Benson, D.F., “Dementia:

Principles of Diagnosis and Management,” The

Older Patient 1{1):23-28, 1987.

Custis, D., Senior Medical Advisor, Paralyzed

Veterans of America, Washington, DC, personal

communication, Aug. 21, 1989.

Czarnecki, J., Project Coordinator, ACCESS, Family Service of Northwest Ohio, Toledo, OH, personal communication, July 24, 1989.

Danforth, A., Living With Alzheimer’s: Ruth’s Story

(Falls Church, VA: The Prestige Press, 1986).

Davies, H., Priddy, J.M., and Tinklenberg, Jr.,

“Support Groups for Male Caregivers of Alzheimer’s Patients,” Clinical Gerontologist 5(3/4):385-

395, 1986.

Davis, K., Lillie-Blanton, M., Lyons, B., et al.,

“Health Care for Black Americans: The Public

Sector Role,” Milbank Quarterly 65(Suppl. 1):213-

247,1987.

Deimling, G., comments to the symposium “Dementia and the Black Family Experience: Issues in

Research, Practice, and Education,” at the annual

meeting of the Gerontological Society of America,

Washington, DC, Nov. 19, 1987.

Deimling, G.T., and Bass, D.M., “Symptoms of

Mental Impairment Among Elderly Adults and

Their Effects on Family Caregivers,” Journal of

Gerontology 41:778-784, 1986.

DeLay, F., Member, AARP Board of Directors,

“Statement of the American Association of Retired

Persons on Caring for Alzheimer’s Victims,”

before the Select Committee on Aging, House of

Representatives, U.S. Congress, Washington, DC,

Mar. 21, 1989.

Dever, C., Development Director, Eastern Shore

Rural Health System, Inc., Onancock VA, personal
References .353

164.

165.

166.

167.

168.

169.

170.

171.

172.

173.

174.

175.

communications, Aug. 2, 1989, and Sept. 8, 1989,

and quarterly reports on ESRHS’s Alzheimer’s

Disease Project for June 14, 1984, Jan. 25, 1985,

Oct. 25,1985, Apr. 25,1986, July 25,1986, Oct. 24,

1986, Jan. 17, 1988, July 27, 1988, and for the

period January to May 1989.

DeVito, C.A., and Zubkoff, W., “South Shore

Hospital and Medical Center Geriatric Assessment

and Planning program: Implementation Strategies,” draft, Miami Beach, FL, December 1986.

Die, A.H., and Seelbach, W. C., ‘Problems, Sources

of Assistance, and Knowledge of Services Among

Elderly Vietnamese Immigrants,” Gerontologist

28(4):448-452, 1988.

Dittmar, N.D., and Smith, G.P., “Evaluation of

Board and Care Homes: Summary of Survey

Procedures and Findings,” Denver Research Institute, University of Denver, Denver, CO, Feb. 22,

1983.

Ditzler, J., Chief Medical Director, U.S. Veterans

Administration, Washington, DC, “Testimony,”

Aging Veterans’ Health Care Issues, joint hearing

before the Subcommittee on Hospitals and Health

Care, Committee on Veterans Affairs and Select

Committee on Aging, House of Representatives,

U.S. Congress, Apr. 23, 1985, VA Comm. Serial

No. 99-13, Aging Comm. Serial No. 99-501 (Washington, DC: U.S. Government Printing Office,

1985).

Dolan, K.R., and Holtz, J., “The Commission on

Accreditation for Home Care in New Jersey,”

Caring 5(4):49-50, April 1986.

Dolson, R.L., “Discussion of a program To Assist

Victims of Dementia and Their Families,” submitted by the National Association of Area Agencies on

Aging to the Office of Technology Assessment,

U.S. Congress, Washington, DC, Jan. 6, 1989.

Dolson, R.L., Executive Director, Michigan Region

IV Area Agency on Aging, Inc., St. Joseph, MI,

letter to the Office of Technology Assessment, U.S.

Congress, Washington, DC, July 12, 1989.

Dolson, R.L., Executive Director, Michigan Region

IV Area Agency on Aging, Inc., St. Joseph, MI,

personal communication, July 20, 1989.

Donabedian, A., “Evaluating the Quality of Medical Care,’ Milbank Memorial Fund Quarterly:

Health and Society 44:167-170, July 1966.

Donabedian, A., The Definition of Quality and

Approaches to its Assessment (Ann Arbor, Ml:

Health Administration Press, 1980).

Donabedian, A., “Quality Assessment and Assurance: Unity of Purpose, Diversity of Means,”

Inquiry 25(1):173-192, 1988.

Downing, R., “The Elderly and Their Families,”

Case Management in Human Service Practice, M.

176.

177.

178.

179.

180.

181.

182.

183.

184.

185.

186.

187.

188.

189.

Weil and J.M. Karls (eds.) (San Francisco, CA:

Jossey-Bass Publishers, 1985).

Drane, J.F., “The Many Faces of Competency,”

Hastings Center Report 15(2):17-21, 1985.

Dubler, N.N., “Some Legal and Moral Issues

Surrounding Informed Consent for Treatment and

Research Involving the Cognitively Impaired Elderly,” Legal and Ethical Aspects of Health Care

for the Elderly, M.B. Kapp, H.E. Pies, and A.E.

Doudera (eds.) (Ann Arbor, MI: Health Administration Press, 1985).

Dubler, N.N., “Introduction,” Generations 11(4):6-

8, 1987.

Dubler, N.N., “Improving the Discharge Planning

Process: Distinguishing Between Coercion and

Choice,” Gerontologist 28(Suppl.):76-81, 1988.

Dubler, N.N., and Strauss, P.J., “Ethical Dilemmas

Facing Caregivers and Attorneys in Dealing With

Legal, Financial, and Health-Care Decision Making,” Understanding Alzheimer’s Disease, M.K

Aronson (cd.) (New York, NY: Charles Scribner &

Sons, 1988).

Dubler, N.N., and Zuckerman, C., Discharge Plarning for Elderly Patients of Diminished Capacity

(Bronx, NY: Montefiore Medical Center, 1986).

Durante, J.F., “Evaluating Day Care Services,”

Cleveland Alzheimer’s Disease and Related Disorders Association Chapter, Cleveland, OH, no date.

Eckert, S.K., Executive Director, Cleveland Alzheimer’s Association, Cleveland, OH, personal

communications, Sept. 13, 1988, Apr. 26, 1989,

May 3, 1989, and July 27, 1989.

Eckert, S.K., Executive Director, Cleveland Alzheimer’s Association, Cleveland, OH, letter to the

Office of Technology Assessment, U.S. Congress,

Washington, DC, July 24, 1989.

Eckert, S.K., Bass, D., Kuechle, M.B., Noelker, L.,

Smyth, K., and Whitehouse, P., meeting on sources

of information about services for persons with

dementia, Cleveland, OH, Sept. 13, 1988.

Eckert, S.K., and Smyth, K., “A Case Study of

Methods of Locating and Arranging Health and

Long-Term Care for Persons With Dementia,”

contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC,

May 1988.

Eggert, G.M., Zimmer, J.G., Hall, W.J., et al., “Case

Management: A Randomized Controlled Study

Comparing a Neighborhood Team and a Centralized Individual Model,’ draft, Monroe County

Ixmg-Term Care Program Inc., East Rochester, NY,

May 1990.

Ehrlich, P., and Frank T., “Family Lifeline: Bridging the Miles,” Gerontologist 28(1) :108-1 11,1988.

Eisenberg, J. M., “The Internist as Gatekeeper,”

Annals of Internal Medicine 102(4) ;537-543, 1985.
354 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

190.

191.

192.

193.

194.

195.

196.

197.

198.

199.

200.

201.

E..mrnr, M., Public Affairs Specialist, National Institute on Aging, National Institutes of Health, U.S.

Department of Health and Human Services, Bethesda, MD, personal communication, Aug. 14,

1989.

E.N. Rogers Memorial Veterans Hospital, Bedford,

MA, Wives Support Group, Geriatric Research,

Education, and Clinical Center, Meeting, Aug. 3,

1988.

Evans, D.A., Funkenstein, H.H., Albert, M.S., et al.,

“Prevalence of Alzheimer’s Disease in a Community Population Higher Than Previously Reported,

Journal of the American Medical Association 262(18):

2551-2556, 1989.

Fairfax County (Virginia) Area Agency on Aging,

“Survey of the State of Virginia’s Area Agencies on

Aging on Alzheimer’s Disease,” Fairfax County,

VA, 1987.

Fairhill Institute for the Elderly, “The Development

of a Campus for Life Enhancement and professional

Enrichment,” pamphlet, Cleveland, OH, no date.

Falcone, D., and Jaeger, B.J., “Case Management of

Health Services for Older Adults: Apologies and

promises,’ Center Reports on Advances in Research (Duke University Center for the Study of

Aging and Human Development), 12(1):1-8, 1988.

Family Service of Northwest Ohio, “ACCESS

Project Information,‘‘Toledo, OH, September 1988.

Family Survival Project for Brain-Damaged Adults,

“Wherever You Live, There’s Help,” brochure,

San Francisco, CA, no date.

Family Survival Project for Brain-Damaged Adults

“Employed Caregivers of Brain-Impaired Adults:

An Assessment of the Dual Role,” prepared by R.B.

Enright and L. Friss, San Francisco, CA, February

1987.

Family Survival Project for Brain-Damaged Adults,

San Francisco, CA, “Annual Report: Second Year

Progress of Programs Under Chapter 1658 of 1984,

Statewide Resources Consultant and Regional Resource Centers For Brain-Impaired Adults and

Their Families, 1986,” contract report prepared for

the California State Department of Mental Health,

Contract No. 86-77115, Sacramento, CA, February

1987.

Family Survival Project for Brain-Damaged Adults,

San Francisco, CA, “Annual Report: Third Year

Progress of Programs Under Chapter 1658 of 1984,

Statewide Resources Consultant and Regional Resource Centers, 1987,” contract report prepared for

the California State Department of Mental Health,

Contract No. 87-78024, Sacramento, CA, February

1988.

Famighetti, R.A., “Understanding the Family Coping With Alzheimer’s Disease: An Application of

202.

203.

204.

205.

206.

207.

208.

209.

210.

211.

212.

213.

214.

215.

Theory to Intervention,” Clinical Gerontologist

5(3/4):363-384, 1986.

Feinberg, T., and Goodman, B., “Affective Illness,

Dementia, and Pseudodementia,” Journal of Clinical Psychiatry 45:99-103, 1984.

Fellin, P.A., and Powell, T.J., “Mental Health

Services and Older Adult Minorities: An Assessment,” Gerontologist 28(4):442-447, 1988.

Fessler, S.R., and Adams, C.G., “Nurse/Social

Worker Role Conflict in Home Health Care,”

Journal of Gerontological Social Work 9(1):113-

123,1985.

Fine, D.R., ‘The Home as the Workplace: Prejudice

and Inequity in Home Health Care,” Caring

5(4):12-19, April 1986.

Fink, A., Siu, A.L., Brook, R.H., et al., “Assuring

the Quality of Health Care for Older Persons: An

Expert Panel’s Priorities,” Journal of the American

Medical Association 258(14):1905-1908, 1987.

Finley, J. K., Director of Government Relations,

National Council of Community Mental Health

Centers, Rockville, MD, personal communications,

Mar. 15, 1989, Aug. 21, 1989, and Apr. 3, 1990.

Firman, J.P., President, United Seniors Consumer

Cooperative, Washington, DC, personal communication, July 17, 1989, and Sept. 25, 1989.

Fischer, L.R., and Eustis, N.N., “DRGs and Family

Care for the Elderly: A Case Study,” Gerontologist

28(3):383-389, 1988.

Fisk A. A., “Decisionmaking in Cases of Diminished Competence, ” letter to the editor, Journal of

the American Geriatric Society 32(8):621-622,

1984.

Fisk A.A., and Pannill, F. C., “Assessment and

Care of the Community-Dwelling Alzheimer’s

Disease Patient,” Journal of the American Geriatrics Society 35(4):307-311, 1987.

Fisk C.F., Commissioner, Administration on Aging,

U.S. Department of Health and Human Services,

‘‘Statement,” Reauthorization of the Older Americans Act, vol. 1, joint hearing before the Select

Committee on Aging and its Subcommittee on

Human Services, House of Representatives, U.S.

Congress, Sept. 16, 1986, Comm. Pub. No. 99-601

(Washington, DC: U.S. Government Printing Office, 1986).

Flinn, D.E., McMahon, T.C., and Collins, M.F.,

‘‘Health Maintenance Organizations and Their Implications for Psychiatry,” Hospital and Community Psychiatry 38(3):255-263, 1987.

Florida Department of Health and Rehabilitation

Services, Aging and Adult Services Program Office, “Florida’s Alzheimer’s Disease Initiative,”

Tallahassee, FL, May 1986.

Florida Department of Health and Rehabilitation

Services and Governor’s Alzheimer’s Disease Ad-
References ● 355

visory Committee, “Alzheimer’s Disease Initiative:

Comprehensive Plan,” working draft, Tallahassee,

FL, April 1989.

216. Focht, J.M., remarks to “The National Conference

on Home Care Quality,” sponsored by the Office of

the Assistant Secretary for Planning and Evaluation,

U.S. Department of Health and Human Services,

Washington, DC, June 1, 1988.

217. Foley, W.J., “Dementia Among Nursing Home

Patients: Defining the Condition, Characteristics of

the Demented, and Dementia on the RUG II

Classification System,’ contract report prepared for

the Office of Technology Assessment, U.S. Congress, Washington, DC, April 1986.

218. Folstein, M.F., Folstein, S.E., and McHugh, P.R.,

“ ‘Mini-Mental State:’ A Practical Method for

Grading the Cognitive State of Patients for the

Clinician,” Journal of Psychiatric Research 12:189-

198, 1975.

219. Forbis, B.L., Principal Assistant to the Director,

Division of Aging, Missouri Department of Social

Services, Jefferson City, MO, personal communications, Dec. 6,1988, Apr. 5,1989, and June 14,1989.

220. Ford, A. S., “Alzheimer’s Disease Initiative,” memorandum to the members of the State Advisory

Council, Aging and Adult Services, Florida Department of Health and Rehabilitative Services, Tallahassee, FL, Jan. 29, 1987.

221. Ford, A. S., Coordinator, Florida’s Alzheimer’s

Disease Initiative, Aging and Adult Services Program Office, Florida Department of Health and

Rehabilitative Services, Tallahassee, FL, personal

communications, January 1988, and Nov. 16, 1989.

222. Ford, A. S., “Diagnosis and Assessment of Alzheimer’s Clients: Florida’s Memory Disorder Clinics,’ presented at the Alzheimer’s Association

Public Policy Forum, Washington, DC, Apr. 5,

1989.

223. Fortinsky, R., and Hathaway, T.J., “The Appropriateness of Boarding Home Care for Persons With

Alzheimer’s Disease,” American Journal of Alzheimer’s Care and Related Disorders and Research

3(2):37-44, 1988.

224. Foundation for Hospice and Homecare, Basic Home

Care Statistics: The Industry 1988 (Washington,

DC: 1988).

225. Fox, P.J., Lindeman, D.A., and Benjamin, A. E.,

Status of Alzheimer’s Disease Diagnostic and

Treatment Centers and Alzheimer’s Disease Research Grants in California (San Francisco, CA:

University of California, Institute for Health and

Aging, January 1986).

226. Fox, P.J., Lindeman, D.A., and Benjamin, A.E.,

“Descriptive Characteristics of Alzheimer’s Disease Patients in the State of California: The Differential Impact of the Disease on Aged Women, ’

presented at the annual meeting of the American

Public Health Association, New Orleans, LA, Oct.

18-20,1987.

227. Fox, P.J., Lindeman, D.A., and Benjamin, A.E.,

Evaluation of Alzheimer’s Disease Diagnostic and

Treatment Centers in California: 1987 Project

Year (San Francisco, CA: University of California,

Institute for Health and Aging, January 1988).

228. Frankfather, D.W., Smith, M.J., and Care, F.G.,

Family Care of the Elderly (Lexington, MA:

Lexington Books, D.C. Heath& Co., 1981).

229. Freedman, D.X., “Physicians and the Mental Illnesses: The Nudge From ADAMHA,” Journal of

the American Medical Association 255(18):2485-

2486, 1986.

230. Freeman, I. C., “Consumer Advocacy Issues in Case

Management,” Improving Access for Elders: The

Role of Case Management--Conference Proceedings (Seattle, WA: University of Washington,

Institute on Aging, 1986).

231. French, C.J., Lyon-Morrison, N., and Levine, E.B.,

Understanding and Caring for the Person With

Alzheimer’s Disease (Atlanta, GA: Atlanta Area

Chapter of the Alzheimer’s Disease and Related

Disorders Association, Inc., 1985).

232. Fridkin, H., Information and Referral Specialist,

Greater Washington DC Chapter of the Alzheimer’s

Association, Bethesda, MD, personal communication, Sept. 14, 1988.

233. Friedman, D.E., “Eldercare: The Employee Benefit

of the 1990s?” Across the Board 23(6):45-51,

1986.

234. Friedman, E., “A Decisive Decade for HMOs,”

Hospitals 58(8):96-103, 1984.

235. Friss, L., Manager, Family Survival Project for

Brain-Damaged Adults (Statewide Resources Consultant), San Francisco, CA, “Profile: California’s

Regional Resource Centers’ Client and Patient

Population, April-September 1988,” prepared for

the Office of Technology Assessment, U.S. Congress, Washington, DC, February 1989.

236. Fulton, J., Director, Social Work Service, Department of Medicine and Surgery, U.S. Veterans

Administration, Washington, DC, “Development

of Continuity of Care/Case Management Services in

the VA Health Care System,” memorandum to

Chiefs of Social Work Service at VA Medical

Centers, June 3, 1987.

237. Gaines, W., Associate Professor, Department of

Anthropology, Case Western Reserve University,

remarks to the First Annual Interdisciplinary Grand

Rounds: Alzheimer’s Disease and Ethnic Populations, sponsored by the Visiting Nurse Association

and Health Matrix, Cleveland, OH, Apr. 2, 1987.
356 ● Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

238.

239.

240.

241.

242.

243.

244.

245.

246.

247.

248.

249.

250.

251.

252.

Gaitz, C.M., “Multidisciplinary Team Care of the

Elderly: The Role of the Psychiatrist,” Gerontologist 27(5):553-556, 1987.

Galten, R., Director of Clinical Services, National

Association for Home Care, Washington, DC,

personal communications, Apr. 19, 1988, May 11,

1989, and Sept. 7,1989.

Gelfand, D.E., The Aging Network: Programs and

Services (New York, NY: Springer Publishing Co.,

1984).

Generations, “Coercive Placement of the Elderly:

Protection or Choice?” Generations 11(4), 1987.

George, L.K., “Caregiver Well-Being: Correlates

and Relationships With Participation in Community

Self-Help Groups,” final report to the Antis

Foundation of the American Association of Retired

Persons, Washington, DC, December 1983.

George, L.K. “Respite Care: Evaluating a Strategy

for Easing Caregiver Burden,” Advances in Research (Duke University Center for the Study of

Aging and Human Development), 10(2):253-259,

1986.

George, L.K., and Gwyther, L.P., “Caregiver WeIlBeing: A Multidimensional Examination of Family

Caregivers of Demented Adults,” Gerontologist

26(3):253-259, 1986.

George, L.K., and Gwyther, L.P., ‘Support Groups

for Caregivers of Memory-Impaired Elderly: Easing Caregiver Burden,” Families in Transition:

Primary Prevention Programs That Work, L.A.

Bond (cd.) (Newbury Park CA: Sage Publications,

1988).

Georgia Department of Human Resources, Office of

Aging, Alzheimer’s Disease Study Committee,

Alzheimer’s Disease Study Committee Report (Atlanta, GA: December 1985).

Gerace, C.S., and Noelker, L. S., “Clinical Social

Work Practice With Black Elderly and Their Family

Caregivers,” draft, Benjamin Rose Institute, Cleveland, OH, 1988.

Gerber, T, Director of the Alzheimer’s Disease and

Other Dementias Registry, New York State Department of Health, Albany, NY, personal communications, Aug. 21, 1989 and Nov. 14, 1989.

Geriatric Authority of Holyoke, “Alzheimer’s Resource and Referral Center, ’ Holyoke, MA, no

date.

German, P. S., Shapiro, S., Skinner, E.A., et al.,

“Detection and Management of Mental Health

Problems of Older Patients by Primary Care Providers, ’ Journal of the American Medical Association

257(4):489-493, 1987.

Gerontologist, “Autonomy in Long-Term Care,”

Gerontologist 28(Suppl.), June 1988.

Gibson, J.M., “Memo to Potential Participants in

the National Values History Project,” Institute of

253.

254.

255.

256.

257,

258.

259.

260.

261.

262.

263.

264.

265.

266.

Public Law, University of New Mexico, Albuquerque, NM, March 1989.

Gilhooly, M.L.M., “Legal and Ethical Issues in the

Management of the Dementing Elderly,” The

Dementias: Policy and Management, M.L.M. Gilhooly, S.H. Zarit, and J.E. Birren (eds.) (Englewood

Cliffs, NJ: Prentice Hall, 1986).

Given, C., Michigan State University, East Lansing,

MI, unpublished data on functional impairments

and use of services for persons with dementia,

prepared for the Alzheimer’s Association, Chicago,

IL, Aug. 23, 1988.

Given, C., Michigan State University, East Lansing,

MI, unpublished data on use of services for persons

with dementia, Jan. 9, 1989.

Glosser, G., and Wexler, D., “Participants’ Evaluation of Educational/Support Groups for Families of

Patients With Alzheimer’s Disease and Other Dementia,” Gerontologist 25:233-236, 1985.

Glosser, G., Wexler, D., and Balmelli, M., “Physicians’ and Families’ Perspectives on the Medical

Management of Dementia,’ Journal of the American Geriatrics Society (6):383-391, 1985.

Goldberg, D., Steele, J.J., Johnson, A., et al.,

“Ability of Primary Care Physicians To Make

Accurate Ratings of Psychiatric Symptoms,” Archives of General Psychiatry 39:829-833, 1982.

Goldman, A., Executive Assistant, Georgia State

Office on Aging, Atlanta, GA, personal communication, Mar. 17, 1988.

Goldman, A., “A Summary of Alzheimer’s Disease

Activities in Georgia,” Georgia State Office on

Aging, Atlanta, GA, April 1989.

Goldstein, R., Director, New York City Alzheimer’s

Resource Center, New York, NY, personal communication, June 1988.

Gomez, M.E., Medical Interviewer, University of

Southern California, Los Angeles, CA, personal

communication, Dec. 15, 1988.

Goodman, C., Education Coordinator, Wisconsin

Alzheimer’s Information and Training Center, Milwaukee, WI, personal communication, June 20,

1988.

Gottleib, G.L., and Reisberg, B., “Legal Issues in

Alzheimer’s Disease,” American Journal of Alzheimer’s Care and Related Disorders and Research

3(2):24-36, 1988.

Grau, L., “Case Management and the Nurse,”

Geriatric Nursing 5(8):372-375, November/December 1984.

Gray, C. D., Acting Deputy Assistant Secretary for

Human Development Services, U.S. Department of

Health and Human Services, Washington, DC,

“Statement,” The Proposed Fiscal Year 1988

Budget: What It Means For Older Americans,

hearing before the Special Committee on Aging,
References .357

267.

268.

269.

270.

271.

272.

273.

274.

275.

276.

277.

Senate, U.S. Congress, Mar. 13, 1987, Serial No.

100-3 (Washington, DC: U.S. Government Printing

Office, 1987).

Greater Washington D.C. Chapter of the Alzheimer’s Disease and Related Disorders Association, “Grants Awarded by Alzheimer’s Association

of Greater Washington,” The Advocate, p. 1,

October 1988.

Green, G., “Case Management: State of the Art,”

Coordinated Service Delivery Systems for the

Elderly: New Approaches for Care and Referral in

New York State, R. Bennett, S. Frisch, B.J. Gurland,

et al. (eds.) (New York, NY: Haworth Press, 1984).

Greenberg, J.N., Leutz, W.N., Ervin, S., et al., “The

Social/Health Maintenance Organization and longTerm Care,” Generations 9(4):51-55, 1985

Greenberg, J.N., Leutz, W.N., Greenlick, M., et al.,

“The Social HMO Demonstration: Early Experience,” Health Affairs 7(3):66-79, 1988.

Greene, R.R., Social Work with the Aged and Their

Families (New York, NY: Aldine de Gruyter,

1986).

Greene, R.R., Program Manager, Gerontology Program, Division of Epidemiology and Disease Control, New Jersey Department of Health, Trenton, NJ,

personal communication, Nov. 16, 1989.

Greengloss, S., “Political Action and Advocacy,”

Danish Medical Bulletin, Gerontology Special Supplement Series No. 5-Quality of Long-Term Care,

pp. 68-73, 1987.

Greenlick, M.R., Director, Kaiser Permanence Center for Health Research, Portland, OR, on behalf of

the Social HMO Consortium, “Testimony on

Catastrophic Health Insurance,” Catastrophic Insurance: How the Bowen Plan Fails, hearing before

the Subcommittee on Health and Long-Term Care,

Select Committee on Aging, House of Representatives, U.S. Congress, Feb. 17, 1987, Comm. Pub.

100-615 (Washington, DC: U.S. Government Printing Office, 1987).

Griffith, E., National Association for Home Care,

Washington, DC, “Statement,” Long-Term Care

Insurance, hearing before the Subcommittee on

Commerce, Consumer Protection, and Competitiveness, Committee on Energy and Commerce,

House of Representatives, U.S. Congress, Apr. 20,

1988, Serial No. 100-128 (Washington, DC: U.S.

Government Printing Office, 1988).

Grisham, M., White, M., and Miller, L., “Case

Management as a Problem-Solving Strategy,’ Pride

Institute Journal of Long-Term Care 2(4):21-28,

1983.

Gronvall, J.A., Chief Medical Director, Veterans

Health Services and Research Administration, U.S.

Department of Veterans Affairs, Washington, DC,

278.

279.

280.

281.

282.

283.

284.

285.

286.

287.

288.

289.

290.

291,

letter to the Office of Technology Assessment, U.S.

Congress, Washington, DC, Aug. 4, 1989.

Grossberg, G.T., Zimny, G.H., and Scallet, L.J.,

“Guardianship of the Cognitively Impaired Elderly: Directions for Research,” Alzheimer’s Disease Treatment and Family Stress: Directions for

Research, E. Light and B.D. Lebowitz (eds.) (Rockville, MD: U.S. Department of Health and Human

Services, Public Health Service, Alcohol, Drug

Abuse, and Mental Health Administration, National

Institute of Mental Health, 1989).

Group Health Association of America, “HMO Fact

Sheet,” Washington, DC, June 1987.

Gruber, L.R., Shadle, M., and Polich, C.L., “From

Movement to Industry: The Growth of HMOs,”

Health Affairs 7(3):197-208, 1988.

Grundy, E., “Community Care for the Elderly,

1976-84,” British Medical Journal 294:626-629,

1987.

Gulyas, R., Staff, Older Alaskans Commission,

Juneau, AK, personal communication, Aug. 24,

1989.

Gustafson, N., Program Coordinator, Visiting Nurse

and Home Care, Inc., Hartford, CT, letters to the

Office of Technology Assessment, U.S. Congress,

Washington, DC, Feb. 24, 1988 and Nov. 3, 1988.

Guttman, D., Perspective on Equitable Share in

Public Benefits by Minority Elderly (Washington,

DC: Catholic University of America, 1980).

Gwyther, L. P., Care of Alzheimer’s Patients: A

Manual for Nursing Home Staff (Washington, DC:

American Health Care Association, 1985).

Gwyther, L. P., “The Duke Aging Center Family

Support Program: A Grassroots Outreach Program

Generates Principles and Guidelines,” Center Reports on Advances in Research 11(2):1-9, 1987.

Gwyther, L.P, “Care Management,” prepared for

the Health Services Task Force of the Alzheimer’s

Disease and Related Disorders Association, Durham, NC, June 11, 1987.

Gwyther, L.P., “Assessment: Content, Purpose,

Outcomes,” Generations 12(5):11-15, 1988.

Gwyther, L.P., “Nursing-Home-Care Issues,” Understanding Alzheimer’s Disease, M.K. Aronson

(cd.) (New York, NY: Charles Scribner & Sons,

1988).

Gwyther, L. P., Director, Family Support Program,

Duke University Medical Center, Center for the

Study of Aging and Human Development, Durham,

NC, personal communications, May 2, 1988, and

Aug. 23, 1988.

Gwyther, L.P., “Barriers to the Appropriate Use of

Community-Based Services by Families of Persons

With Dementia,” contract report prepared for the

Office of Technology Assessment, U.S. Congress,

Washington, DC, June 1988.
358 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

292.

293.

294.

295.

296.

297.

298.

299.

300.

301.

302.

303.

304.

Gwyther, L.P., and Blazer, D.G., “Family Therapy

and the Dementia Patient,’ American Family Physician 29(5):149-156, 1984.

Haley, W.E., “Relationship of Stage of Dementia to

Caregiving Stressors,” presented at the annual

meeting of the American Psychological Association, New York, NY, August 1987.

Haley, W.E., Brown, S.L., and Levine, E. G.,

“Experimental Evaluation of the Effectiveness of

Group Intervention for Dementia Caregivers,”

Gerontologist 27(3):376-382, 1987.

Haley, W.E., Brown, S.L., and Levine, E. G.,

“Family Caregiver Appraisals of Patient Behavioral Disturbance in Senile Dementia, ” Clinical

Gerontologist 6(4);25-33, 1987.

Haley, W.E., Levine, E.G., Brown, S.L., et al.,

“Psychological, Social, and Health Consequences

of Caring for a Relative With Senile Dementia,”

Journal of the American Getitrics Society 35(5)Y105-

411, 1987.

Haley, W.E., Levine, E.G., Brown, S.L., et al.,

“Stress, Appraisal, Coping, and Social Support as

Predictors of Adaptational Outcome Among Dementia Caregivers,“Psychology and Aging 2(4);323-

330, 1987.

Hall, H., Board Member of the National Association

for Home Care, “Statement on Quality of Home

Care,” Black Box of Home Care Quality, hearing

before the Select Committee on Aging, House of

Representatives, U.S. Congress, July 29, 1986,

Comm. Pub. 99-66 (Washington, DC: U.S. Government Printing Office, 1987).

Hall, H.D., “Paraprofessionals: Their Role and

Definition in Home Health Care,” Generations

11(2):27-28, 1986/87.

Ham, R.J., “Frequency of Physician Visits by the

Caregivers of a Demented Patient,” letter to the

editor, Journal of the American Geriatrics Society

35(5):475-476, 1987.

Hamerman, D., Dubler, N.N.,. Kennedy, G.J., et al.,

‘ ‘Decisionmaking in Response to an Elderly Woman

With Dementia Who Refused Surgical Repair of

Her Fractured Hip,” Journal of the American

Geriatrics Society 34(3):234-239, 1986.

Hamilton, B., Medical Health Care Program Analyst, Florida Department of Health and Rehabilitative Services, Tallahassee, FL, personal communication, June 20, 1988.

Hamilton, S., “Regulated Fragmentation: An Unplanned Outcome,” Network (National Center for

Homecare Education and Research, New York NY)

1(3):1-3, 1987.

Harder, W.P., Gornick J.C., and Burt, M.R., “Adult

Day Care: Supplement or Substitute,” draft, Urban

Institute, Washington, DC, 1983.

305.

306.

307.

308.

309.

310.

311.

312.

313.

314.

315.

316.

317.

318.

Barrington, C.H., Grant, L.A., Ingman, S.R., et al.,

“The Study of Regulation of Home Health Care

Agencies in Two States: California and Missouri,”

Institute for Health and Aging, University of

California, San Francisco, CA, December 1988.

Harrisburg Institute of Psychiatry, Harrisburg, PA,

“Alzheimer’s Disease Assessment Program, Final

Report: Technical Assistance for Development of

Diagnostic and Evaluation Centers for Alzheimer’s

Disease,” contract report prepared for the Pennsylvania Department of Aging, Contract No. 158005,

Harrisburg, PA, no date.

Hartford, M.E., and Parsons, R., “Groups With

Relatives of Dependent Older Adults,” Gerontologist 22(3):394-398, 1982.

Hart-Wigsen, G., Staff, National Council on the

Aging, Washington, DC, personal communication,

Sept. 20, 1988.

Harvard Medicare Project, “Medicare Coming of

Age: Proposal for Reform,” Division of Health

Policy Research and Education, Harvard University, Boston, MA, 1986.

Hay, J.W., and Ernst, R., “The Economic Costs of

Alzheimer’s Disease,” American Journal of Public

Health 77(9) ;1169-1175, 1987.

Health Care Quality Alliance, “Quality: An Issues

Brief,” draft, Washington, DC, Jan. 11, 1988.

Hedrick, S. C., and Inui, T. S., “The Effectiveness

and Cost of Home Care: An Information Synthesis,” Health Services Research 20(6):851-880,

1986.

Heishetter, J., Director, Field Services, Alzheimer’s

Association National Headquarters, Chicago, IL,

personal communication, May 26, 1989.

Henderson, J.N., “Ethnic Specific Alzheimer’s

Support Group Intervention in a Hispanic Community: A Pilot Project Study,’ draft, Suncoast Gerontology Center, Tampa, FL, no date.

Henderson, J.N., “Mental Disorders Among the

Elderly: Dementia and its Sociocultural Correlates,” The Elderly as Modern Pioneers, P. Silverman (cd.) (Bloomington, IN: Indiana University

Press, 1988).

Hepburn, K., Severance, J., and Buran, G., “Case

Management for Rural Veterans,” presented at the

annual meeting of the Gerontological Society of

America, Washington, DC, Nov. 18-22, 1987.

Hepburn, K., Severance, J., Gates, B., et al.,

“Institutional Care of Dementia Patients: A Statewide Survey of Long-Term Care Facilities and

Special Care Units,” presented at the annual

meeting of the Gerontological Society of America,

San Francisco, CA, Nov. 18-22, 1988.

Hereford, R.W., “New Community Services for

Older People,” presented at the 34th annual meet-
References ● 359

319.

320.

321.

322.

323.

324.

325.

326.

327.

328.

329.

330.

331.

332.

333.

ing of the American Society on Aging, San Diego,

CA, March 1988.

Heston, L.L., and White, J.A., Dementia: A Practical Guide to Alzheimer’s Disease and Related

Illnesses (New York, NY: W.H. Freeman, 1983).

Hexter, K.W., “Private Sector Services to Aid Older

Americans: A Survey of Gatekeeper Programs and

Other Programs sponsored by Utility Companies,”

American Association of Retired Persons, Washington, DC, 1989.

Hiatt, L.G., “Supportive Design for People With

Memory Impairments,” Confronting Alzheimer’s

Disease, A.C. Kalicki (cd.) (Owings Mills, MD:

National Health Publishing, 1987).

High, D.M., “All in the Family: Extended Autonomy and Expectations in Surrogate Health Care

Decisionmaking,” Gerontologist 28(Suppl.):46-

51, 1988.

Higley, K., Executive Director, St. Louis Alzheimer’s Association Chapter, St. Louis, MO, letter

to the Office of Technology Assessment, U.S.

Congress, Washington, DC, Apr. 14, 1989.

Hilker, M.A., “Families and Supportive Residential

Settings as Long-Term Care Options,” Aging,

Health and Family, T.H. Brubaker (cd.) (Newbury

Park, CA: Sage Publications, 1987).

Hitchcock, E.A., Vice Chairman, National Board of

Directors, Alzheimer’s Association, Chicago, IL,

personal communication, Aug. 25, 1989.

Hoffman, R. S., “Diagnostic Errors in the Evaluation of Behavioral Disorders,” Journal of the

American Medical Association 248(8):964-967,

1982.

Hofland, B.F., “Autonomy in Long-Term Care:

Background Issues and a Programmatic Response,”

Gerontologist 28(Suppl.):3-9, 1988.

Hogan, D.B., Fox, R.A., Badley, B.W.D., et al.,

“Effect of a Geriatric Consultation Service on

Management of Patients in an Acute Care HospiW,” Canadian Medical Association Journal 136(7):

713-717, 1987.

Holmes, D., Holmes, M., Steinback, L., et al., “The

Use of Community-Based Services in Long-Term

Care by Older Minority Persons,” Gerontologist

19(4):389-397, 1979.

Holmes, D., Teresi, J., and Holmes, M., “Differences Among Black Hispanic, and White People in

Knowledge About Long-Term Care Services,”

Health Care Financing Review 5(2); 51-67, 1983.

Holt, S.W., “The Role of Home Care in Long-Term

Care,” Generations 11(2):9-12, 1987.

Howard, J.T, “Public Programs Serving Alzheimer’s Disease Patients and Their Families,”

Sacramento, CA, September 1986.

Howard, J.T., “State Efforts,” presented to “Differential Diagnosis of Dementing Diseases,” con334.

335.

336.

337.

338.

339.

340.

341.

342.

343.

344.

sensus development conference sponsored by the

National Institutes of Health, Public Health Service,

U.S. Department of Health and Human Services,

Bethesda, MD, July 7, 1987.

Howard, J.T., Coordinator, Alzheimer’s Program,

California Department of Health Services, Sacramento, CA, personal communications, Dec. 16,

1987, and Mar. 10, 1988.

Howard, J.T, “California’s Alzheimer’s Disease

Diagnostic and Treatment Centers,” unpublished

material distributed at the Alzheimer’s Association

Public Policy Forum,” Washington, DC, Apr. 2-5,

1989.

Howe, D.K., Coordinator, National Institute on

Adult Daycare, Washington, DC, personal communication, July 18, 1989.

Hoyer, R., Director of Research and Development,

National Association for Home Care, Washington,

DC, personal communication, Sept. 7, 1989.

Hu, T., Huang, L., and Cartwright, W. S., “Evaluation of the Costs of Caring for the Senile Demented

Elderly: A Pilot Study,” Gerontologist 26:158-163,

1986.

Hughes, C.P., Berg, L., Danziger, W., et al., “A

New Clinical Scale for the Staging of Dementia,”

British Journal of Psychiatry 140:566-572, 1982.

Hughes, S.L., “Home Care: Where We Are and

Where We Need to Go,” draft, Center for Health

Services and Policy Research, Northwestern University, Evanston, IL, prepared for the National

Institute on Aging In-Home, Community, and

Supportive Services Workshop, Bethesda, MD,

Apr. 19, 1990.

Humphrey, C.J., “Elderly Services Program: VNA

of the Valley Community Mental Health in Derby,

Connecticut,” Caring 5(7):4548, July 1986.

Humphreys, D., Mason, R., Guthrie, M., et al., “The

Miami Channeling Program: Case Management and

Cost Control,” Quality Review Bulletin 14(5):154-

160, 1988.

Hunter, J., Director, Area Agency on Aging, Fairmont, WV, and Treasurer, National Association of

Area Agencies on Aging, on behalf of the Leadership Council of Aging Organizations, “Testimony,” Aging Veterans’ Health Care Issues, joint

hearing before the Subcommittee on Hospitals and

Health Care, Committee on Veterans’ Affairs and

the Select Committee on Aging, House of Representatives, U.S. Congress, Apr. 23, 1985, Veterans’

Affairs Comm. Serial No. 99-13, Select Comm. on

Aging Serial No. 99-501 (Washington, DC: U.S.

Government Printing Office, 1985).

Idaho Alzheimer’s Disease and Spousal Impoverishment Task Force, “Resolution of the Task Force

on Alzheimer’s Disease and Spousal Irnpoverish-
360 ● Confined Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

345.

346.

347.

348.

349.

350.

351.

352.

353.

354.

355.

356.

357.

358.

ment,” prepared for the Idaho Office on Aging,

Boise, ID, Jan. 22, 1988.

Illinois Department on Aging, “Alzheimer’s Initiative: The Challenge and the Response,” Springfield, IL, March 1988.

Illinois Department on Aging, “Elderlink: Help for

the Long-Distance Caregiver,” brochure, Springfield, IL, March 1989.

Illinois Department of Public Health, “Regional

Alzheimer’s Disease Assistance Center at Southern

Illinois University School of Medicine,” Springfield, IL, no date.

Illinois Department of Public Health, Office of

Health Services, Division of Chronic Diseases,

“Illinois’ Alzheimer’s Disease Program: Acts, Rules,

and Regulations, ’ Springfield, IL, April 1987.

Illinois Department of Public Health, Office of

Health Services, Division of Chronic Diseases,

Alzheimer’s Disease Program, “State Alzheimer’s

Disease Assistance (ADA) Plan,” draft, Springfield, IL, September 1987.

Illinois Governor’s Task Force on Alzheimer’s

Disease, “The Governor’s Task Force on Alzheimer’s Disease, Report to the General Assembly,

1986-89,” Springfield, IL, September 1989.

Illinois Legislative Research Unit, “Alzheimer’s

Disease: Activity of the 84th Illinois General

Assembly,” Springfield, IL, July 1985.

Indiana Governor’s Task Force on Alzheimer’s

Disease and Other Senile Dementias, Alzheimer’s

Task Force Annual Report--1989, Indianapolis, IN,

December 1989.

Intergovernmental Health Policy Project, State Financing of Long-Term Care Services for the Elderly, Vol. I: Executive Report, D.J. Lipson and E.

Donohoe (Washington, DC: May 1988).

Intergovernmental Health Policy Project, State Financing of Long-Term Care Services for the Elderly, Vol. II: State Profiles, D.J. Lipson, E.

Donohoe, and C. Thomas (eds.) (Washington, DC:

May 1988).

Interstudy, Center for Aging and Long-Term Care,

The Future of Medicare and HMOs, prepared by

L.H. Iversen and C.L. Polich (Excelsior, MN:

1985).

Interstudy, Center for Aging and Long-Term Care,

A Description and Analysis of State Pre-Admission

Screening Programs, prepared by L.H. Iversen

(Excelsior, MN: March 1986).

Interstudy, Center for Aging and Long-Term Care,

Private Case Management for Older Persons and

Their Families, prepared by L.J. Secord (Excelsior,

MN: July 1987).

Interstudy, Center for Aging and Long-Term Care,

The Provision of Home Health Care Services

Through Health Maintenance Organizations, pre359.

360.

361.

362.

363.

364.

365.

366.

367.

368.

369.

370.

371.

372.

pared by M. Parker and C. Polich (Excelsior, MN:

September 1988).

Interstudy, Center for Managed Care Research,

National Survey of Mental Health, Alcohol, and

Drug Abuse Services in HMOs: Chartbook, prepared by M. Shadle and J.B. Christianson (Excelsior, MN: July 1988).

Iowa Governor’s Task Force on Alzheimer’s Disease and Related Disorders, Iowa Governor’s Task

Force on Alzheimer’s Disease and Related Disorders: Final Report, Des Moines, IA, November

1989.

Iris, M.A., “Guardianship and the Elderly: A

Multi-Perspective View of the Decisionmaking

Process,” Gerontologist 28(Suppl.):3945, 1988.

Isaacs, M. R., and Goldman, S.K., State Initiatives in

Long-Term Care: Report of a Survey of 32 States

(Bethesda, MD: Alpha Center, August 1984).

Iversen, L.H., Oberg, C.N., and Polich, C.L., “The

Availability of Long-Term Care Services for Medicare Beneficiaries in Health Maintenance Organizations,” Medical Care 26(9):918-924, 1988.

Jackman, L.L., Executive Assistant to the Secretary,

Pennsylvania Department of Aging, Harrisburg,

PA, PA, personal communications, March 1988,

and Nov. 16, 1988.

Jarvik L.F., Parentcare: A Commonsense Guide for

Grown-Up Children (New York, NY: Crown,

1988).

Jarvik L.F., and Winograd, C.H. (eds.), Treatments

for the Alzheimer Patient: The Long Haul (New

York, NY: Springer Publishing Co., 1988).

Jencks, S.F., “Recognition of Mental Distress and

Diagnosis of Mental Disorder in Primary Care,”

Journal of the American Medical Association 253(13):

1903-1907, 1985.

Jenicke, M.A., “Alzheimer’s Disease: What the

Practicing Clinician Needs To Know,” Journal of

Geriatric Psychiatry and Neurology 1:37-46, 1988.

Jensen, P. R., Proctor, J. C., and Saken, T.J., Coordinated Planning for the Rural Elderly: A Guide for

Area Agencies on Aging and Community Health

Centers, available from Shawnee Health Service

and Development Corporation, P.O. Box AG,

Murphysboro, IL, no date.

Jerrell, J.M., and Larsen, J.K., “How Community

Mental Health Centers Deal With Cutbacks and

Competition,’ Hospital and Community Psychiatry

36(11):1169-1174, 1985.

Joint Commission on Accreditation of Healthcare

Organizations, “Home Care Program Starts

Strong," Home Care Bulletin 9:1, 1989.

Justice, D., “State Initiatives in Reforming LongTerm Care,” Business and Health 4(2):14-19,

1986.
References .361

373.

374.

375.

376.

377.

378.

379.

380.

381.

382.

383.

384.

385.

386.

387.

Justice, D., “Policy Coordination and Integration:

Alternative State Approaches: Overview,” Building Affordable Long-Term Care Alternatives (Washington, DC: National Governors’ Association, 1987).

Justice, D., Deputy Director, National Association

of State Units on Aging, Washington, DC, personal

communications, Sept. 2, 1987, and Feb. 9, 1990.

Justice, D., and Preston, B., “State Long-Term Care

Programs: Summary Profiles of Twelve States,”

prepared for the National Governors’ Association,

Washington, DC, 1986.

Kaeser, L., “Reimbursement Issues and Quality of

Care,” The Teaching Nursing Home, E.L. Schneider, C.J. Wendland, A.W. Zimmer, et al. (eds.)

(New York NY: Raven Press, 1985).

Kahan, J., Kemp, B., Staples, F.R., et al., “Decreasing the Burden of Families Caring for a Relative

With a Dementing Illness,” Journal of the American Geriatrics Society 33(10):664-670. 1985.

Kahn, R., Shulman, E., and Steinberg, G., How To

Care for the Alzheimer’s Disease Patient: A Comprehensive Training Manual for Homemaker-Home

Health Aides (Washington, DC: Foundation for

Hospice and Homecare, 1986).

Kaiser, T.F., Director, Geriatric Ambulatory Consultation Service, Rochester, NY, personal communication, June 17, 1988, and Sept. 11, 1989.

Kamikawa, L.M., “The Elderly: A Pacific/Asian

View,” Aging 319/320:3-9, 1981.

Kanak, J., Deputy Director, Massachusetts League

of Community Health Centers, Boston, MA, personal communications, May 20, 1988, and Sept. 9,

1989.

Kane, R.A., “Case Management in Health Care

Settings,’ Case Management in the Human Service

Practice, M. Weil and J.M. Karls and Associates

(eds.) (San Francisco, CA: Jossey-Bass, 1985).

Kane, R.A., “Senile Dementia and Public Policy,”

The Dementias: Policy and Management, M.

Gilhooley, J. Birren, and S. Zarit (eds.) (Englewood

Cliffs, NJ: Prentice-Hall, 1985).

Kane, R. A., “Ethical Aspects of Case Management:

Issue Identification,’ Improving Access for Elders:

The Role of Case Management--Conference Proceedings (Seattle, WA: University of Washington,

Institute on Aging, 1986).

Kane, R.A., “Quality of Life in Long-Term Institutions: Is a Regulatory Strategy Feasible?” Danish

Medical Bulletin, Gerontology Special Supplement

Series No. 5--Quality of brig-Term Care, pp.

73-81, 1987.

Kane, R.A., “Case Management: Ethical Pitfalls on

the Road to High-Quality Managed Care,” Quality

Review Bulletin 14(5):161-166, 1988.

Kane, R.A., “Case Management: What Next?”

Generations 12(5):77-78, 1988.

388,

389,

390.

391.

392,

393.

394.

395.

396.

397.

398.

399.

400.

401.

Kane, R.A., “The Noblest Experiment of Them All:

Learning From the National Long-Term Care Channeling Demonstration, ” Health Services Research

23(1):189-198, 1988.

Kane, R.A., Professor, School of Public Health and

School of Social Work, University of Minnesota,

Minneapolis, MN, statement to the OTA Advisory

Panel Methods of Locating and Arranging Health

and Long-Term Care Services for Persons With

Dementia, Washington, DC, June 23, 1988.

Kane, R.A., Professor, School of Public Health and

School of Social Work, University of Minnesota,

Minneapolis, MN, letter to the Office of Technology Assessment, U.S. Congress, Washington, DC,

Oct. 20, 1988.

Kane, R. A., and Kane, R.L., Long-Term Care:

Principles, Programs, and Policies (New York

NY: Springer Publishing Co., 1987).

Kane, R.A., and Kane, R.L., “Long-Term Care:

Variations on a Quality Assurance Theme,” Inquiry

25(1):132-146, 1988.

Kane, R.L., “Acute and Long-Term Care: Decisions and Decisionmakers,” The Impact of Technology on Long-Term Health Care, J.M. Grana and

D.B. McCallum (eds.) (Milwood, VA: Project

HOPE Center for Health Affairs, 1987).

Kane, R.L., “Contrasting the Models: Reflections

on the Pattern of Geriatric Evaluation Unit Care,

Clinics in Geriatric Medicine, L.Z. Rubenstein, L.J.

Campbell, and R.L. Kane (eds.) (Philadelphia, PA:

W.B. Saunders, 1987).

Kansas Department on Aging, Resource Packet:

Parkinson’s Disease (Topeka, KS: June 1988).

Kansas Department on Aging, Alzheimer’s and

Related Diseases Task Force, Kansas Alzheimer’s

and Related Diseases Task Force: Final Report

(Topeka, KS: 1986).

Kansas Department on Aging, Alzheimer’s and

Related Diseases Task Force, Kansas Alzheimer’s

and Related Diseases Task Force: Final Report

Summary (Topeka, KS: 1986).

Karuza, J., Calkins, E., Duffey, J., et al., “Networking in Aging: A Challenge, Model, and Evaluation,” Gerontologist 28(2):147-155, 1988.

Katzman, R., “Alzheimer’s Disease,” New England Journal of Medicine 314(15):964-973, 1986.

Katzman, R., Lasker, B., and Bernstein, N., “Accuracy of Diagnosis and Consequences of Misdiagnosis of Disorders Causing Dementia, ” contract

report prepared for the Office of Technology

Assessment, U.S. Congress, Washington, DC, June

1986.

Kelch, P., Senior Consultant, Media and Consumer

Relations, Blue Cross and Blue Shield Association,

Washington, DC, personal communication, May

11, 1989.
362 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

402.

403.

404.

405.

406.

407.

408.

409.

410.

411.

412.

413.

414.

Kellogg, L.B., Associate Director, Region IV AAA,

Inc., St. Joseph, MI, personal communication, Nov.

2, 1989.

Kelly, K., Manager, Services and Education Programs, Family Survival Project for Brain-Damaged

Adults, San Francisco, CA, personal communications, Feb. 19, 1988.

Kelly, K., Manager, Services and Education Programs, Family Survival Project for Brain-Damaged

Adults, San Francisco, CA, statement to the OTA

Advisory Panel on Methods of Locating and

Arranging Health and Long-Term Care Services for

Persons With Dementia, Washington, DC, June 23,

1988.

Kelly, K., Manager, Services and Education Programs, Family Survival Project for Brain-Damaged

Adults, San Francisco, CA, letter to the Office of

Technology Assessment, U.S. Congress, Washington, DC, Oct. 12, 1988.

Kemper, P., Applebaum, R., and Harrigan, M., A

Systematic Comparison of Community Care Demonstrations (Madison, WI: University of Wisconsin

Institute for Research on Poverty, 1987).

Kemper, P., Applebaum, R., and Harrigan, M.,

‘‘community Care Demonstrations: What Have We

harried?” Health Care Financing Review 8(4):87-

100, 1987.

Kentucky Alzheimer’s Disease Task Force, Kentucky Alzheimer’s Disease Task Force Final Report,

prepared for the Kentucky Cabinet for Human

Resources, Frankfort, KY, July 28, 1987.

Kerr, M.H., and Bick, J.M., “A Client-Centered

Case Management Model,” Quality Review Bulletin 14(9):279-283, 1988.

Keyes, B., “Wisconsin Alzheimer’s Information

and Training Center,” program description, Milwaukee, WI, December 1987.

Kiecolt-Glaser, J. K., and Glaser, R., “Caregiving,

Mental Health, and Immune Function,’ Alzheimer’s

Disease Treatment and Family Stress: Directions

for Research, E. Light and B.D. Lebowitz (eds.)

(Rockville, MD: U.S. Department of Health and

Human Services, Public Health Service, Alcohol,

Drug Abuse, and Mental Health Administration,

National Institute of Mental Health, 1989).

Kirkland, G.I., Bethesda, MD, “Caregiver Responses,’ memo to the chairman of the Maryland

Governor’s Task Force on Alzheimer’s Disease and

Related Disorders, March 1985.

Kirkland, G. I., Bethesda, MD, “Report on Physician’s Responses,” memo to the chairman of the

Maryland Governor’s Task Force on Alzheimer’s

Disease and Related Disorders, March 1985.

Kirkland, G. I., Bethesda, MD, personal communication, June 23, 1988.

415.

416.

417.

418.

419.

420.

421.

422.

423.

424.

425.

426.

Kleban, M.H., Brody, E.M., and Schoonover, C.B.,

et al., “Some Effects of Parent Care: Patterns of

Strain for Working and Nonworking Adult Daughters,” presented at the annual meeting of the

Gerontological Society of America, San Antonio,

TX, NOV. 16-20, 1984.

Klein, D.A., “Purchasing Case Management From

the Aging Network for Long-Term Care Insurance,” Generations 12(5):68-70, 1988.

Kloezen, S., Fitten, L.J., and Steinberg, A., “Assessment of Treatment Decisionmaking Capacity in

a Medically Ill Patient,” Journal of the American

Geriatrics Society 36(11):1055-1058, 1988.

Knight, B.G., Outreach With the Elderly (New

York NY: New York University Press, in press,

1989).

Knight, B., Reinhart, R., and Field, P., “Senior

Outreach Services: A Treatment-Oriented Outreach

Team in Community Mental Health,” Gerontologist 22(6):544-547, 1982.

Koch, S., and Campbell, P., John Snow, Inc.,

Boston, MA, “Evaluating the Collaboration of

State Agencies on Aging and State Primary Care

Association on Health Service Development for the

Elderly in Community and Migrant Health Centers

and Area Agencies on Aging,” prepared for the

Health Resources and Services Administration,

U.S. Department of Health and Human Services,

Rockville, MD, 1988.

Kodner, D.L., “Delivery of Comprehensive LongTerm Care to Older Adults: The Social/Health

Maintenance Organization,’ Hospital Research and

Educational Trust, Chicago, IL, 1985.

Kodner, D.L., Vice President and Chief Operating

Officer, Center for Aging, Freehold, NJ, personal

communication, Dec. 14, 1988.

Kodner, D.L., and Feldman, E. S., “The Service

Coordination/Delivery Dichotomy: A Critical Issue

To Address in Reforming the Long-Term Care

System,” Home Health Care Services Quarterly

3(1):59-68, 1982.

Kodner, D.L., Mossey, W., and Dapello, R.D.,

“New York’s Nursing Home Without Walls: A

Provider-Based Community Care Program for the

Elderly,” Home Health Care Services Quarterly,

Special Double Issue--Community-Based Systems

of Long-Term Care, R.T. Zawadski (cd.) 4(3/4):107-

126, 1983.

Koff, T.H., “Nursing Home Management of Alzheimer’s Disease: A Plea for Standards of Care,”

American Journal of Alzheimer’s Care and Related

Disorders 1(3):12-15, 1986.

Koin, D., The Effects of Caregiver Stress on

Physical Health Status,’ Alzheimer’s Disease Treatment and Family Stress: Directions for Research, E.

Light and B.D. Lebowitz (eds.) (Rockville, MD:
References .363

427.

428.

429.

430.

431.

432.

433.

434.

435.

436.

437.

438.

439.

440.

U.S. Department of Health and Human Services,

Public Health Service, Alcohol, Drug Abuse, and

Mental Health Administration, National Institute of

Mental Health, 1989).

Krout, J.A., “The Nature and Correlates of Senior

Center Linkages,” presented at the annual meeting

of the Gerontological Society of America, Washington, DC, Nov. 18-22, 1987.

Krughoff, R. M., President, Washington Consumers’ Checkbook, Washington, DC, personal communication, 1988.

Kumar, A., Koss, E., Metzler, D., et al., “Behavioral

Symptomatology in Dementia of the Alzheimer

Type,” Alzheimer Disease and Associated Disorders 2(4):363-365, 1988.

Kurland, C.H., Administrator, Office of Home Care

Programs, New Jersey Department of Human Services, letter to the Office of Technology Assessment,

U.S. Congress, Washington, DC, Aug. 31, 1988.

Kushman, J. E., and Freeman, B.K., “Service Consciousness and Service Knowledge Among Older

Americans,” International Journal of Aging and

Human Development 23(3):217-237, 1986.

Lacayo, C. G., A National Study To Assess the

Service Needs of the Hispanic Elderly: Final Report

(Los Angeles, CA: Asociacion Nacional Pro Personas Mayores, 1980).

Ladd, R., “Oregon’s Long-Term Care System for

the Elderly and Physically Disabled,” Senior Services Division, Oregon Department of Human Resources, Salem, OR, July 1986.

Ladd, R., “State of Oregon,” Building Affordable

Long-Term Care Alternatives (Washington, DC:

National Governors’ Association, 1987).

Ladd, R., Administrator, Senior Services Division,

Oregon Department of Human Resources, Salem,

OR, statement to the OTA Advisory Panel on

Methods of Locating and Arranging Health and

Lang-Term Care Services for Persons With Dementia, Washington, DC, June 23, 1988.

Ladd, R., Administrator, Senior Services Division,

Oregon Department of Human Resources, Salem,

OR, personal communication, July 5, 1989.

Lalonde, B., “Assuring the Quality of Home Care

via the Assessment of Client Outcomes, ” Lalonde

Research and Consultation, Seattle, WA, no date.

Langwell, K., Rossiter, L., Brown, R., et al., “Early

Experience of Health Maintenance Organizations

Under Medicare Competition Demonstrations,”

Health Care Financing Review 8(3):37-55, 1987.

Langwell, K.M., and Hadley, J.P., “Cavitation and

the Medicare Program: History, Issues, and Evidence,” Health Care Financing Review, Annual

Supplement, pp. 9-20, 1986.

Larkin, J., Clinical Social Worker, Geriatric Research, Education, and Clinical Center, E.N. Rogers

441.

442.

443.

444.

445.

446.

447.

448.

449.

450.

451.

452.

453.

454.

Memorial Veterans Hospital, Bedford, MA, personal communications, Aug. 3, 1988, and July 14,

1989.

Larsen, J.K., “Community Mental Health Services

in Transition,” Community Mental Health Journal

23(4):250-259, 1987.

Larson, E. B., “Attending to the Needs of Elderly

Patients,’ Journal of the American Geriatrics

Society 36(8):753-754, 1988,

Larson, P.J., Mastalish, R. C., Gibeau, J.L., et al.,

“Breadwinners and Caregivers: Supporting Workers Who Care for Elderly Family Members,”

National Association of Area Agencies on Aging,

Washington, DC, 1988.

LaRue, A., Span, J., Hills, C.D., “Cognitive Impairment in Late Life Depression: Clinical Correlates

and Treatment Implications,” Journal of Affective

Disorders 11:179-184, 1986.

Lasoski, M. C., and Thelen, M.H., “Attitudes of

Older and Middle-Aged Persons Toward Mental

Health Intervention,” Gerontologist 27(3):288-

292, 1987.

Laudicina, S.S., and Burwell, B., “A Profile of

Medicaid Home and Community-Based Care Waivers, 1985: Findings of a National Survey,” LaJolla

Management Corp., Rockville, MD, September

1986.

Lawton, M.P., Brody, E.M., and Saperstein, A.R.,

“A Controlled Study of Respite Service for Caregivers of Alzheimer’s Patients,” draft, Philadelphia

Geriatric Center, Philadelphia, PA, 1988.

Lawton, M.P., Brody, E.M., and Saperstein, A.R.,

“A Controlled Study of Respite Service for Caregivers of Alzheimer’s Patients,” Gerontologist

29(1):8-16, 1989.

Leader, S., “Home Health Benefits Under Medicare,” American Association of Retired Persons,

Washington, DC, September 1986.

Lebow, G., Codirector, Aging Network Services,

Bethesda, MD, personal communications, June 17,

1988, and Aug. 7, 1989.

Lebowitz, B.D., Light, E., and Bailey, F., “Mental

Health Center Services for the Elderly: The Impact

of Coordination With Area Agencies on Aging,”

Gerontologist 27(6):699-702, 1987.

Leutz W., Abrahams, R., Greenlick, M., et al.,

“Targeting Expanded Care to the Aged: Early

SHMO Experience,” Gerontologist 28(1):4-

17, 1988.

Levit, K.R., Lazenby, H., Waldo, D.R., et al.,

“National Health Expenditures, 1984,” Health

Care Financing Review 7(1):1-35, 1985.

Levy, V. L., Director of Minority Affairs, New York

City Department for the Aging, “Statement,”

Improving Minority Participation in Older Americans Act Programs, hearing in Flint, MI, before the
364 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

455.

456.

457.

458.

459.

460.

461.

462.

463.

464.

465.

466.

Subcommittee on Human Resources, Committee on

Education and Labor, House of Representatives,

U.S. Congress, June 25, 1988, Serial No. 100-89

(Washington, DC, U.S. Government Printing Office, 1988).

Liechtenstein, H., and Winograd, C.H., “Geriatric

Consultation: A Functional Approach,” Journal of

the American Geriatrics Society 32(5):356-361,

1984.

Lidoff, L., Mobilizing Community Outreach to the

High-Risk Elderly: The Gatekeepers (Washington,

DC: National Council on the Aging, Inc., 1984).

Light, E., Social Science Program Specialist, Aging

Research Branch, National Institute of Mental

Health, Alcohol, Drug Abuse, and Mental Health

Administration, Public Health Service, U.S. Department of Health and Human Services, Rockville,

MD, personal communication, Sept. 2, 1986.

Light, E., Lebowitz, B., and Bailey, F., “CMHCs

and Elderly Services: An Analysis of Direct and

Indirect Services and Service Delivery Sites,”

Community Mental Health Journal 22:294-302,

1986.

Like, R. C., “Primary Care Case Management: A

Family Physician’s Perspective,” Quality Review

Bulletin 14(6):174-178, 1988.

Lindeman, D.A., -Administrative Director, Northern

California Alzheimer’s Disease Center, University

of California, Davis/Herrick Hospital and Health

Center, Davis, CA, personal communications, June

10, 1988, and Nov. 20, 1989.

Ling, K., Vice President of Community Services,

Alzheimer’s Association, Chicago, IL, personal

communications, Sept. 8, 1989, and May 21, 1990.

Linkous, J.D., Executive Director, National Association of Area Agencies on Aging, Washington, DC,

personal communications, May 8,1989, and August

1989.

Linn County (Iowa) Case Management Demonstration Project, Standards and Procedures Manual

(Linn County, IA: Jan. 6, 1988).

Lipkowitz, R., “Services for Alzheimer Patients

and Their Families, ’ Understanding Alzheimer’s

Disease, M.K. Aronson (cd.) (New York NY:

Charles Scribner & Sons, 1988).

Lipson, D.J., Senior Research Associate, Intergovernmental Health Policy Project, Washington, DC,

“Overview of State Activities in Alzheimer’s

Disease,” prepared for a meeting of the Advisory

Committee of the Health Care Financing Administration’s Alzheimer’s Disease Demonstration Program, Baltimore, MD, May 28, 1987.

Lisnoff, A., Coordinator of Community Services,

Division of Mental Health, Rhode Island Department of Mental Health, Retardation, and Hospitals,

467.

468.

469.

470.

471.

472.

473.

474.

475.

476.

477.

478.

479.

Cranston, RI, personal communication, Apr. 13,

1989.

Litwak, E., Helping the Elderly: The Complementary Roles of Informal Network and Formal

Systems (New York, NY: Guilford Press, 1985).

Liu, K., “Analysis of Data Bases for Health

Services Research on Dementia” contract report

prepared for the Office of Technology Assessment,

U.S. Congress, Washington, DC, June 1986.

Liu, K., Manton, K. G., and Liu, B.M., “Home Care

Expenses for the Disabled Elderly,” Health Care

Financing Review 7(2):51-58, 1985.

Lohr, K.N., “Outcome Measurement: Concepts and

Questions,” Inquiry 25(1)37-50, 1988.

Lohr, K.N., Yordy, K.D., and Thier, S.0., “Current

Issues in Quality of Care,” Health Affairs 7(1):5-

18, 1988.

Lambardi, T, “Nursing Home Without Walls,”

Generations 12(2):21-23, 1986/87.

Lombardo, N.E., “Alzheimer’s Disease and Related Disorders Association: Birth and Evolution of

a Major Voluntary Health Association,’ Understanding Alzheimer’s Disease: What It Is; How To

Cope With It; Future Directions, M.K. Aronson

(cd.) (New York, NY: Charles Scribner & Sons,

1988).

Lombardo, R., Program Supervisor, Long-Term

Care Unit, Aging and Adult Services Program

Office, Florida Department of Health and Rehabilitative Services, Tallahassee, FL, letter to the Office

of Technology Assessment, U.S. Congress, Washington, DC, Jan. 11, 1989.

Longo, D.R., Warren, M., Roberts, J. S., et al.,

“Extent of ‘Do Not Resuscitate’ Policies Varies

Across Healthcare Settings,” HeahhProgress69:66-

73, 1988.

Louis Harris and Associates, “Views of Informed

Consent and Decisionmaking: Parallel Surveys of

Physicians and the Public,” Making Health Care

Decisions, President’s Commission for the Study of

Ethical Problems in Medicine and Biomedical and

Behavioral Research (Washington, DC: U.S. Government Printing Office, 1982).

Lowy, L., Social Work With the Aging (New York

NY: Longman, 1985).

Ludomnik, J.E., “Ambulatory Care and the Poor

Elderly,” Manhattan Coalition of Community

Health Centers, New York NY, 1987.

Lusky, R. A., Rosen, K., Strelez, L., et al., University

of Connecticut Health Center, Farmington, CT,

“Survey of Professional and Informal Care of

Connecticut Residents With Alzheimer’s Disease

and Related Disorders: Final Research Report,”

prepared for the Connecticut Governor’s Task

Force on Alzheimer’s Disease, Hartford, CT, June

1988.
References ● 365

480. Mabry, J., Chief of VA Nursing Home Care, Office

of Geriatrics and Extended Care, Department of

Medicine and Surgery, U.S. Veterans Administration, Washington, DC, personal communication,

Aug. 22, 1988.

481. MacAdam, M., and Piktialis, D., “Mechanisms of

Access and Coordination,” Older Veterans: Linking VA and Community Resources, T. Wetle and J.

Rowe (eds.) (Cambridge, MA: Harvard University

Press, 1984).

482. Mace, N.L., “Programs and Services Which Specialize in the Care of Persons With Dementing

Illnesses-Issues and Options,” American Journal

of Alzheimer’s Care and Research 2(3):10-17,

1987.

483. Mace, N. L., Consultant, Baltimore, MD, letter to the

Office of Technology Assessment, U.S. Congress,

Washington, DC, July 19, 1987.

484. Mace, N.L., Baltimore, MD, “The Role of ADRDA

Chapters in Providing Information and Referral

Services for Persons With Dementia,” contract

report prepared for the Office of Technology

Assessment, U.S. Congress, Washington, DC, 1988.

485. Mace, N.L., Consultant, Baltimore, MD, personal

communications, Apr. 20, 1988, Oct. 26, 1988, and

Feb. 22, 1989.

486. Mace, N.L., and Gwyther, L.P., Selecting a Nursing

Home With a Dedicated Dementia Care Unit

(Chicago, IL: Alzheimer’s Association, 1988).

487. Mace, N.L., and Rabins, P.V., The 36-Hour Day

(Baltimore, MD: Johns Hopkins Press, 1981).

488. Mace, N.L., and Rabins, P.V., A Survey of Day Care

for the Demented Adult in the United States

(Washington, DC: National Council on the Aging,

Inc., December 1984).

489. Manderscheid, R., Survey and Reports Branch

Chief, Division of Biometry and Applied Science,

National Institute of Mental Health, Alcohol, Drug

Abuse, and Mental Health Administration, Public

Health Service, U.S. Department of Health and

Human Services, Rockville, MD, personal communication, Sept. 11, 1989.

490. Mansfield, G. H., Associate Executive Director for

Government Relations, Paralyzed Veterans of America, “Statement,” Health Care Services for Aging

Veterans, hearing before the Subcommittee on

Oversight and Investigations, Committee on Veterans’ Affairs, House of Representatives, U.S. Congress, Apr. 13,1989, Serial No. 101-8 (Washington,

DC: U.S. Government Printing Office, 1989).

490a. Manton, K.G., and Hausner, T., “A Multidimensional Approach to Case Mix for Home Health

Services, ’’Health Care Financing Review 8(4):37-

54, 1987.

491. Manuel, R., “The Minority Aged: Providing a

Conceptual Perspective,” Minority Aging: Sociological and Social Psychological Issues, R. Manuel

(cd.) (WestPort, CT: Greenwood Press, 1982).

492. Manuel, R. C., and Berk, M.L., “A Look at Similarities and Differences in Older Minority Populations,” Aging 339:21-29, 1983.

493. Martin, D. C., Morycz, R.K., and McDowell, J., et

al., “Community-Based Geriatric Assessment,”

Journal of the American Geriatrics Society 33(9):

602-606,1985.

494. Martinelli, S., program Coordinator, Alzheimer’s

Resource and Referral Center, Holyoke, MA, personal communication, Dec. 3, 1988.

495. Maryland Department of Health and Mental Hygiene, Health Systems Financing Administration,

Services to the Aging, Coordinating Council on

Alzheimer’s Disease and Related Disorders, Interim

Report of the Coordinating Council on Alzheimer’s

Disease and Related Disorders (Baltimore, MD:

December 1987).

496. Maryland Department of Health and Mental Hygiene, Health Systems Financing Administration,

Services to the Aging, Coordinating Council on

Alzheimer’s Disease and Related Disorders, Third

Report of the Coordinating Council on Alzheimer’s

Disease and Related Disorders (Baltimore, MD:

December 1988).

497. Maryland Governor’s Task Force on Alzheimer’s

Disease and Related Disorders, The Maryland

Report on Alzheimer’s Disease and Related Disorders (Baltimore, MD: June 30, 1985).

498. Massachusetts Committee on Alzheimer’s Disease,

Interim Report of the Special Committee Established To Make an Investigation and Study Relative

to Alzheimer’s Disease, prepared for the Senate of

the Massachusetts Legislature, Senate Pub. No.

1791, Boston, MA, Apr. 8, 1986.

499. Massachusetts Committee on Alzheimer’s Disease,

Find Report of the Special Committee Established

To Make an Investigation and Study Relative to

Alzheimer’s Disease, prepared for the Senate of the

Massachusetts Legislature, Senate Pub. No. 1635,

Boston, MA, Dec. 31, 1986.

500. Massachusetts Governor’s Committee on Alzheimer’s

Disease, The Governor’s Committee on Alzheimer’s

Disease: Final Report (Boston, MA: 1985).

501. Mathematical Policy Research, Inc., Princeton, NJ,

Analysis of Project Costs, National Long-Term

Care Channeling Demonstration, prepared by C.

Thornton, J. Will, and M. Davies for the U.S.

Department of Health and Human Services, Contract No. HHS-1OO-8O-8157, Washington, DC, May

1986.

502. Mathematical Policy Research, Inc., Princeton, NJ,

The Evaluation of the National Long-Term Care

Demonstration: Final Report Executive Summary,

National Long-Term Care Channeling Demonstra-
366 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

tion, prepared by P. Kemper, R.S. Brown, G.J.

Carcagno, et al. for the U.S. Department of Health

and Human Services, Contract No. HHS-100-80-

8157, Washington, DC, May 1986.

503. Mathematical Policy Research, Inc., Princeton, NJ,

The Planning and Operational Experience of the

Channeling Projects, Vol. 1 and Vol. 2, National

Long-Term Care Channeling Demonstration, prepared by G.J. Carcagno, R. Applebaum, J. Christianson, et al. for the U.S. Department of Health and

Human Services, Contract No. HHS-1OO-8O-8157,

Washington, DC, July 1986.

504. Mathematical Policy Research, Inc., “Medicare

Alzheimer’s Disease Demonstration Site Application Materials,” Princeton, NJ, May 2, 1988.

505. Mathematical Policy Research, Inc., Princeton, NJ,

“A Case Study of Informal Care Under the Pennsylvania Imng-Term Care Assessment and Management Program: Final Report,’ prepared by N.

Holden for the Department of Aging, Commonwealth of Pennsylvania Harrisburg, PA, June 29,

1988.

506. Mathematical Policy Research, Inc., Princeton, NJ,

“The Appropriateness and Consistency of Assessments in the Pennsylvania Long-Term Care Assessment and Case Management Program: Final Report,” prepared by B. Phillips and B. Schneider for

the Department of Aging, Commonwealth of Pennsylvania, Harrisburg, PA, June 30, 1988.

507. Mather, J.H., “An Overview of the Veterans

Administration and its Services for Older Veterans,” Older Veterans: Linking VA and Community

Resources, T. Wetle and J.W. Rowe (eds.) (Cambridge, MA: Harvard University Press, 1984).

508. Mather, J.H., and Abel, R.W., “Medical Care of

Veterans: A Brief History,” Journal of the American Geriatrics Society 34(10):75740, 1986.

509. Mather, J.H., Goodwin, M., and Kelly, J.R., “The

U.S. Veterans Administration Health Care Delivery

System: One Health Care System’s Approach to

Quality Assurance in Long-Term Care,” Danish

Medical Bulletin, Gerontology Special Supplement

Series No. S-Quality of Long-Term Care, pp.

54-60, 1987.

510. Mathew, L., Sloan, P., Kilby, M., et al., “What’s

Different About a Special Care Unit for Dementia

Patients? A Comparative Study,” American Journal of Alzheimer’s Care and Related Disorders and

Research 3(2):16-23, 1988.

511. Mattis, S., “Mental Status Examination for Organic

Mental Syndrome in the Elderly Patient,” Geriatric

Psychiatry, R. Bellack and B. Karasu (eds.) (New

York, NY: Grune and Stratton, 1976).

512. McAllister, TW., and Price, T.R., “Severe Depressive Pseudodementia With and Without Dementia,” American Journal of Psychiatry 139(5):626-

629, 1982.

513. McCall, C., Lindeman, D.A., and Howard, J.T.,

“State Alzheimer’s Disease Programs and Policies:

Results of a 50 State Survey,” presented to “The

Alzheimer’s Association Public Policy Conference,” Washington, DC, Apr. 5, 1989.

514. McCann, J.J., “Long-Term Home Care for the

Elderly: Perceptions of Nurses, Physicians, and

Primary Caregivers’’Quality Review Bulletin 14(3):66-

74, 1988.

515. McCartney, J.R., and Palmateer, L.M., “Assessment of Cognitive Deficit in Geriatric Patients: A

Study of Physician Behavior,” Journal of the

American Geriatrics Society 33:467-471, 1985.

516. McCaslin, R., “Reframing Research on Service Use

Among the Elderly: An Analysis of Recent Findings,” Gerontologist 28(5):592-598, 1988.

517. McDowell, F.H., and Lincoln, E.M., Choosing a

Nursing Home for the Person With Intellectual Loss

(White Plains, NY: Burke Rehabilitation Center,

1980).

518. McGowan, P., Lead Service Coordinator, Seniors

Plus, Minneapolis, MN, personal communication,

May 20, 1988.

519. McKhann, G., Drachman, D., Folstein, N., et al.,

“Clinical Diagnosis of Alzheimer’s Disease: Report of the NINCDS-ADRDA Work Group Under

the Auspices of the Department of Health and

Human Services Task Force on Alzheimer’s Disease,” Neurology 34:939-944, 1984.

520. McKnight, K., Grants Management Specialist, Policy and Procedures Office, Division of Grants and

Contracts Management, National Institute of Mental Health, Alcohol, Drug Abuse, and Mental Health

Administration, Public Health Service, U.S. Department of Health and Human Services, Rockville,

MD, personal communication, Mar. 14, 1989.

521. McMillan, A., Lubitz, J., Dolores, R., “Medicare

Enrollment in Health Maintenance Organizations,”

Health Care Financing Review 8(3):87-93, 1987.

522. Meade, H., Public Health Consultant, New Jersey

Department of Health, Gerontology Program, Trenton, NJ, personal communications, March 1988,

and Nov. 17, 1988.

523. Mechanic, D., and Aiken, L.H., “Improving the

Care of Patients With Chronic Mental Illness,” New

England Journal of Medicine 317(26):1634-1638,

1987.

524. Mendelson, M. A., Tender Loving Greed (New

York, NY: Alfred A. Knopf, 1974).

525. Merriam, A.E., Aronson, M.K., Gaston, P., et al.,

“The Psychiatric Symptoms of Alzheimer’s Disease,” Journal of the American Geriatrics Society

36(1):7-12, 1988.
References .367

526.

527.

528.

529.

530.

531.

532.

533.

534.

535.

536.

537.

538.

539.

540.

Merrill, J. C., “Defining Case Management,” Business and Health 2(8):5-9, 1985.

Michigan Department of Mental Health, “Confronting the Bureaucracy,” Participant’s Handbook: Alzheimer’s Disease and Related Disorders

Caregiver Training (Lansing, MI: April 1987).

Michigan Health Council, “Report of the Dementia

Subcommittee of the Chronic Disease Advisory

Committee,” Lansing, MI, 1989.

Michigan Region IV Area Agency on Aging, Inc.,

“Michigan Department of Social Services: Preadmission Screening Program Annual Report,” St.

Joseph, MI, Feb. 15, 1989.

Michigan Task Force on Alzheimer’s Disease and

Related Conditions, Alzheimer’s Disease and Related Conditions, Vol. I (Lansing, MI: July 7, 1987).

Michigan Task Force on Alzheimer’s Disease and

Related Conditions, Alzheimer’s Disease and Related Conditions, Vol. II (Technical Supplement)

(Lansing, MI: October 1987).

Milano, M.J., Director, Section for Aging and

Long-Term Care Services, American Hospital Association, Chicago, IL, personal communication,

Oct. 11, 1988.

Miller, B., “Gender and Control Among Spouses of

the Cognitively Impaired: A Research Note,”

Gerontologist 27(4):447453, 1987.

Miller, L. S., Clark, M.L., and Clark, W.F., “The

Comparative Evaluation of California’s Multipurpose Senior Services Project,” Home Health Care

Services Quarterly 6(3):49-79, 1985.

Miller, M. S., “Opportunities for Psychotherapy in

the Management of Dementia,’ Journal of Geriatric Psychiatry and Neurology 2(1):11-17, 1989.

Minnesota Department of Human Services, Alzheimer’s Disease/Dementia Task Force, “Minnesota Alzheimer’s Disease/Dementia Task Force:

Final Recommendations,’ St. Paul, MN, May/June

1988.

Minnesota Governor’s Task Force on Alzheimer’s

Disease, The Governor’s Task Force on Alzheimer’s Disease (St. Paul, MN: Minnesota Department of Human Services, 1987).

Minnesota Task Force on the Needs of Persons With

Brain Impairment, “Final Report of the Minnesota

Task Force on the Needs of Persons With Brain

Impairment,” submitted to the Commissioner of the

Minnesota Department of Human Services, St.

Paul, MN, December 1985.

Mishkin, B., A Matter of Choice: Planning Ahead

for Health Care Decisions (Washington, DC: American Association of Retired Persons, 1986).

Mishkin, B., Attorney, Hogan and Hartson, Washington, DC, personal communication, Apr. 17,

1987.

541.

542.

543.

544.

545.

546.

547.

548.

549.

550.

551.

552.

553.

Missouri Alzheimer’s Disease and Related Disorders Task Force, Missouri Alzheimer’s Disease and

Related Disorders Task Force: First Annual Report

(Jefferson City, MO: Missouri Department of Social

Services, Jan. 15, 1987).

Missouri Alzheimer’s Disease and Related Disorders Task Force, Missouri Alzheimer’s Disease and

Related Disorders Task Force: Second Annual

Report (Jefferson City, MO: Missouri Department

of Social Services, Jan 15, 1988).

Missouri Alzheimer’s Disease and Related Disorders Task Force, Missouri Alzheimer’s Disease and

Related Disorders Task Force: Third Annual Report (Jefferson City, MO: Missouri Department of

Social Services, Jan. 15, 1989).

Mitchell, K., Administrative Officer, Oklahoma

Special Unit on Aging, Oklahoma City, OK,

personal communication, June 7, 1988.

Modrcin, M., Rapp, C.A., and Poertner, J., “The

Evaluation of Case Management Services With the

Chronically Mentally Ill,” mimeo, School of Social

Welfare, University of Kansas, Lawrence, KS, no

date.

Moody, H.R., ‘Ethical Dilemmas in Nursing Home

Placement,” Generations 11(4):16-23, 1987.

Moody, H.R., “From Informed Consent to Negotiated Consent, ’ Gerontologist 28(Suppl.):64-70,

1988.

Moody, ‘IX., Chief, Social Work Service, Louis

Johnson VA Medical Center, Clarksburg, WV,

personal communication, July 13, 1989.

Moore, J.T, Warshaw, G.A., Walden, L.D., et al.,

“Evolution of a Geriatric Evaluation Clinic,”

Journal of the American Geriatrics Society 32(12);900

905, 1984.

Mootz, A., former Director, Home Aide Service and

United Home Care, on behalf of the National

Association for Home Care, “Statement on Home

Care Quality,” Quality of Long-Term Care, hearing

before the Subcommittee on Health, Committee on

Finance, Senate, U.S. Congress, Apr. 28, 1987, S.

Hrg. 100-406 (Washington, DC: U.S. Government

Printing Office, 1987).

Morris, N., District Supervisor, Crotched Mountain

Community Care, Inc., Portsmouth, NH, personal

communication, Nov. 14, 1987.

Morris, R., “Foreword,” Family Care of the

Elderly, D.L. Frankfather, M.J. Smith, and F.G.

Caro (eds.) (Lexington, MA: Lexington Books,

D.C. Heath& Co., 1981).

Morrison, B. J., “Sociocultural Dimensions: Nursing Homes and the Minority Aged,” Gerontological Social Work Practice in Long-Term Care, G.S.

Getzel and M.J. Mellor (eds.) (New York NY:

Haworth Press, 1983).
368 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

554.

555.

556.

557.

558.

559.

560.

561.

562.

563.

564.

565.

566.

567.

568.

569.

Moss, R.J., Mastri, A.R., and Schut, L.J., “The

Coexistence and Differentiation of Late Onset

Huntington’s Disease: A Case Report and Review

of the Literature, ’ Journal of the American Geriatrics Society 36(3):237-241, 1988.

Motenko, A.K., “The Frustrations, Gratifications,

and Well-Being of Dementia Caregivers,” Gerontologist 29(2):166-172, 1989.

Mumma, N.L., “Quality and Cost Control of Home

Care Services Through Coordinated Funding,”

Quality Review Bulletin 13(8):271-278, 1987.

Mumma, N.L., “Tulsa’s Long-Term Care Management Authority: Progress Toward Areawide Consolidation of the Funding and Management of

Long-Term Care,” presented at the annual meeting

of the American Public Health Association, Boston,

MA, NOV. 17, 1988.

Mundinger, M.O., “Community-Based Care: Who

Will Be the Case Managers?” Nursing Outlook

32(6):294-295, 1984.

Murphy, E., “Community Care I: Problems,”

British Medical Journal 295:1505-1508, 1987.

Murphy, E., “Community Care II: Possible Solutions,” British Medical Journal 296:6-8, 1988.

Murphy, P.H., Director, Ombudservice for Home

Care Clients, Community Council of Greater New

York, NY, personal communication, Sept. 15,1988.

Nardone, M., Director, Pennsylvania Bureau of

Long-Term Care, Harrisburg, PA, personal communication, Feb. 17, 1988.

National Academy of Sciences, Institute of Medicine, Improving the Quality of Care in Nursing

Homes (Washington, DC: National Academy Press,

1986).

National Association of Area Agencies on Aging,

“Models of Community-Based Long-Term Care

Systems,” Washington, DC, no date.

National Association of Area Agencies on Aging,

“Establishing the Area Agency Network as Elder

CARE Managers: An NAAAA/Area Agency National Initiative,’ Washington, DC, Jan. 20, 1987.

National Association of Area Agencies on Aging, A

Directory of State and Area Agencies on Aging,

1987-1988 (Washington, DC: 1988)

National Association of Area Agencies on Aging,

“Network News,” Washington, DC, June-July

1989.

National Association of Area Agencies on Aging,

“The Community Care Connection,” Washington,

DC, July 1989.

National Association of Community Health Centers, Washington, DC, “Improving Low-Income

Elders’ Access to Community Health Centers,”

prepared for the Villers Foundation, Washington,

DC, October 1987.

570.

571.

572.

573.

574.

575.

576.

577.

578.

579.

580.

581.

582.

583.

584.

585.

National Association for Home Care, “Inventory of

Home Care Agencies,” Washington, DC, 1989.

National Association for Home Care, “State License and Certificate of Need Survey,” Washington, DC, March 1989.

National Association of Social Workers, “NASW

Standards and Guidelines for Social Work Case

Management for the Functionally Impaired,” Silver

spring, MD, 1984.

National Association of State Mental Health Program Directors, “State Report,” Washington, DC,

NOV. 3, 1986.

National Association of State Units on Aging,

‘‘In-Home and Community-Based Long-Term Care

Services: OHDS/DHSS Research and Demonstrations: A Synthesis,” Washington, DC, Mar. 25,

1985.

National Association of State Units on Aging, State

Units on Aging: Understanding Their Roles and

Responsibilities, 2d ed. (Washington, DC: 1987).

National Association of State Units on Aging,

Family Supports: State Strategies for Enhancement

(Washington, DC: 1988).

National Association of State Units on Aging,

“Elderlink: Towards a National Community Access System, Feasibility Study,” Washington, DC,

Jan. 19, 1989.

National Clearinghouse for Primary Care Information, Community Health Centers: A Quality System

for the Changing Health Care Market (Mclean,

VA: fall 1986).

National Council on the Aging, Inc., National

Institute on Adult Daycare, “National Adult Day

Care: Standards and Self-Assessment Project,”

proposal, Washington, DC, April 1988.

National Council on the Aging, Inc., National

Institute on Adult DayCare, “Summary Report on

Responses From State Monitoring Agencies Regarding Adult Day Care Centers in the U.S.,”

Washington, DC, winter 1988.

National Council on the Aging, Inc., National

Institute on Community-Based Long-Term Care,

Care Management Standards: Guidelines for Practice (Washington, DC: 1988).

National Council of Community Mental Health

Centers, Community Mental Health Salary Survey

(Rockville, MD, 1987).

National Council of Community Mental Health

Centers, National Registry of Community Mental

Health Services, 2d ed. (Rockville, MD, 1987).

National Council of Community Mental Health

Centers, “Membership Profile Report,” Rockville,

MD, February 1988.

National Council of Community Mental Health

Centers, Services for the Seriously Mentally Ill: A
References .369

586.

587.

588.

589.

590.

591.

592.

593.

594.

595.

596.

597.

598.

Survey of Community Mental Health Centers (Rockville, MD: February 1988).

National Governors’ Association, Building Affordable Long-Term Care Alternatives: Integrating State

Policy (Washington, DC: April 1987).

National Governors’ Association, State Long-Term

Care Reform: Development of Community Care

Systems in Six States (Washington, DC: April

1988).

National Health Policy Forum, “HMOs: Problems

and Prospects,” prepared for Forum Workshop on

Health Maintenance Organizations, George Washington University, Washington, DC, August 1988.

National Migrant Referral Project, Inc., Migrant

Health Centers Directory (Austin, TX: April 1987).

Navia, B.A., Jordan, B.D., and Price, R. W., “The

AIDS Dementia Complex I: Clinical Features,”

Annals of Neurology 19:517-524, 1986.

Nebraska Task Force on Alzheimer’s Disease and

Related Disorders, “Report of the Task Force on

Alzheimer’s Disease and Related Disorders to the

Governor and the Legislature of the State of

Nebraska,” Lincoln, NE, Oct. 23, 1987.

Nebraska Task Force on Alzheimer’s Disease and

Related Disorders, “Town Hall Meetings: Executive Summary,” Lincoln, NE, October/November

1988.

Neighbors, H.W., and Taylor, R.J., “The Use of

Social Services by Black Americans,’ Social Service Review 59:258-268, 1985.

Nelson, D, “State of Wisconsin,” Building Affordable Long-Term Care Alternatives: Integrating

State Policy (Washington, DC: National Governors’ Association, April 1987).

Newcomer, R., Associate Director, Institute for

Health and Aging, and Professor, Department of

Social and Behavioral Sciences, University of

California, San Francisco, CA, personal communication, Aug. 17, 1989.

New Hampshire Department of Health and Human

Services, Division of Elderly and Adult Services,

Alzheimer’s Disease and Related Disorders: Report

for 1988-1989 (Concord, NH: 1988).

New Hampshire Department of Health and Human

Services, Division of Elderly and Adult Services,

and Foundation for Hospice and Homecare, “How

To Care for an Individual With Alzheimer’s Disease: A Comprehensive Train-the Trainers Project,” Concord, NH, 1988.

New Hampshire Task Force on Impoverishment of

Spouses of Persons With Alzheimer’s Disease and

Related Disorders, “Impoverishment of Spouses of

Persons With Alzheimer’s Disease and Related

Disorders,’ report to the Speaker of the House of

Representatives, President of the Senate, and Gov599.

600.

601.

602.

603.

604.

605.

606.

607.

608.

609.

610.

ernor of New Hampshire, Concord, NH, Dec. 1,

1988.

New Jersey Alzheimer’s Disease Study Commission, Final Report: New Jersey Alzheimer’s Disease

Study Commission (Trenton, NJ: July 1986).

New Jersey Department of Health, Gerontology

Program, “Services Available: Programs Available

for Persons With Alzheimer’s Disease and Their

Caregivers and Families Sponsored by the New

Jersey State Department of Health, Gerontology

Program,’ ‘ draft, Trenton, NJ, no date.

New Jersey Department of Health and New Jersey

Department of Community Affairs, Alzheimer’s

Disease: A New Jersey Directory of Services for

Family Caregivers and Health and Human Service

Providers (Trenton, NJ: September 1988).

New York Academy of Medicine and the New York

State Health Planning Commission, Alzheimer’s

Disease: Implication for Public Policy in New

York State, recommendations of the Alzheimer’s

Institute, convened in West Point, NY, May 31 and

June 1, 1984.

New York Business Group on Health, “Employer

Survey on Eldercare,” New York, NY, 1986.

New York City Department for the Aging, “Caregiver Training and Support Resource Center,”

proposal for the New York State Office for the

Aging, New York NY, 1988.

New York City Department for the Aging and the

Brookdale Foundation, Agendas for Action: The

Aging Network Responds to Alzheimer’s Disease,

compiled and written by F. Tanner (New York, NY:

August 1986).

New York City Department for the Aging, Alzheimer’s Resource Center and the New York City

Chapter of the Alzheimer’s Association, Alzheimer’s

Disease: Where To Go for Help in New York City

(New York NY: November 1987).

New York State Department of Health, “Network

Catchment Area Maps for the Alzheimer’s Disease

Assistance Centers and Community Services Programs,” provided by T Gerber, Director, Alzheimer’s Disease and Other Dementias Registry,

Albany, NY, 1989.

New York State Department of Health, Gerontology

Program, “Alzheimer’s Activities,” Albany, NY,

April 1989.

New York State Task Force on Life and the Law,

Life-Sustaining Treatment: Making Decisions and

Appointing a Health Care Agent (New York, NY:

July 1987).

Niederehe, G., Fruge, E., Woods, A.M., et al.,

“Caregiver Stress in Dementia: Clinical Outcomes

and Family Considerations,’ presented at the meeting of the Gerontological Society of America, San

Francisco, CA, November 1983.
370 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

611.

612.

613.

614.

615.

616.

617.

618.

619.

620.

621.

622.

623.

Noelker, L. S., Associate Director for Research,

Benjamin Rose Institute, Cleveland, OH, personal

communication, Sept. 13, 1988.

Noelker, L. S., and Poulshock, S.W., Benjamin Rose

Institute, Cleveland, OH, “The Effects on Families

of Caring for Impaired Elderly in Residence,”

prepared for the Administration on Aging, U.S.

Department of Health and Human Services, AoA

Grant No. 90-AR-2112, Washington, DC, 1982.

Nolan, B.S., “Functional Evaluation of the Elderly

in Guardianship Proceedings,” Legal and Ethical

Aspects of Health Care for the Elderly, M.B. Kapp,

H.E. Pies, A.E. Doudera, et al. (eds.) (Ann Arbor,

MI: Health Administration Press, 1985).

North Country Alzheimer’s Partnership, “North

Country Alzheimer’s Project’ unpublished mimeo,

Berlin, NH, no date.

North Dakota Alzheimer’s and Related Dementias

State Task Force, North Dakota Alzheimer’s and

Related Dementias State Task Force: Report to the

Governor, Bismarck, ND, anticipated publishing

date September 1990.

Nowak, J. L., Director, Bureau of Advocacy, Pennsylvania Department of Aging, Harrisburg, PA,

personal communication, February 1988.

Noyes, L., Director, Family Respite Center, Inc.,

Fairfax, VA, personal communication, Apr. 12,

1988.

Nursing Home Area Training Centers of Ohio and

the Ohio Department of Aging, A Manual for

Caregivers of Alzheimer’s Disease Clients in LongTerm Care, by J.T. Harkulich and B.A. Calamita

(Cleveland, OH: Nursing Home Area Training

Centers of Ohio, no date).

Nussel, E., and Wiersma, W., “ACCESS Program

Evaluation,” available from Family Service of

Northwest Ohio, Toledo, OH, May 1989.

O’Donnell, E., Chief of Community Services and

Long-Term Care Programs, Social Work Service,

Clinical Affairs Office, Department of Medicine

and Surgery, U.S. Veterans Administration, Washington, DC, personal communication, Nov. 25,

1987, and Veterans Health Services and Research

Administration, U.S. Department of Veterans Affairs, Washington, DC, personal communications,

May 30, 1989, June 15, 1989, July 17, 1989, and

September 1989.

Ohio Department of Aging, Alzheimer’s Disease

Initiatives Progress Report (Columbus, OH: Dec.

31, 1987).

Ohio Department of Aging, PASSPORT [PreAdmission Screening System Providing Options

and Resources Today] Program, ‘‘PASSPORT

Overview,” Columbus, OH, September 1989.

Ohio Department of Human Services and Ohio

Department of Aging, PASSPORT [Pre-Admission

624.

625.

626.

627.

628.

629.

630.

631.

632.

633.

634.

635.

Screening System Providing Options and Resources

Today] Program, request for proposals, Columbus,

OH, no date.

Ohta, R.J., and Ohta, B.M., “Special Units for

Alzheimer’s Disease Patients: A Critical Look,”

Gerontologist 28(6):803-808, 1988.

Okin, R.L., “How Community Mental Health

Centers Are Coping,” Hospital and Community

Psychiatry 35(11):1118-1125, 1984.

Oklahoma Task Force on Alzheimer’s Disease and

Related Disorders, “Final Report: Oklahoma Task

Force on Alzheimer’s Disease and Related Disorders,” issued pursuant to the State Plan for Achieving Excellence in Health, Oklahoma Health Planning Commission, Oklahoma City, OK, Mar. 31,

1989.

Older American Reports, “Area Agencies Push

Case Management Concept in OAA Reauthorization,” Older American Reports 11(11):1-3, 1987.

Older American Reports, “Method of Certification

To Change for Home Health Agencies Under

HCFA Plan,” Older American Reports 12(2):13,

1988.

Omagbemi, V., Ombudsman for Montgomery County,

MD, Rockville, MD, personal communication,

Sept. 16, 1988.

Omer, H., Foldes, J., Toby, M., et al., “Screening

for Cognitive Deficits in a Sample of Hospitalized

Geriatric Patients: A Re-Evaluation of a Brief

Mental Status Questionnaire,” Journal of the American Geriatrics Society 31(5):266-268, 1983.

O’Neill, G., Executive Director, Shawnee Health

Services and Development Corporation, Murphysboro,

IL, personal communication, Sept. 15, 1989.

On Lok Senior Health Services, “On Lok Senior

Health Services Risk-Based Long-Term Care Initiative: Principles of the Model,” San Francisco, CA,

no date.

On Lok Senior Health Services, San Francisco, CA,

On Lok Senior Health Services: Evaluation of a

Success, prepared by R. Kalish, E. Lurie, R. Wexler,

et al. (San Francisco, CA: November 1975).

On Lok Senior Health Services, San Francisco, CA,

On Lok Senior Health Services: Toward a Continuum of Care: Final Report, prepared by R.T

Zawadski in association with C.L. Yordi for the

Administration on Aging, U.S. Department of

Health, Education, and Welfare, Washington, DC,

AoA Grant No. 90-A-493 (San Francisco, CA:

1979).

On Lok Senior Health Services, On Lok’s CCODA

[Community Care Organization for Dependent

Adults]: A Research and Development Project,

Final Report 1978-1983, prepared by R.T.

Zawadski, J. Shen, C. Yordi, et al. (San Francisco,

CA: December 1984).
References ● 371

636.

637.

638.

639.

640.

641.

642.

643.

644.

645.

646.

647.

648.

649.

On Lok Senior Health Services, “On Lok’s RiskBased CCODA: The Impact of Prospective Capitation on Comprehensive Care to the Elderly (First

Year Findings),” draft prepared by J. Shen, S.

Takeda, and C. Hennessy, San Francisco, CA,

October 1985.

On Lok Senior Health Services, “Replicating the

Risk-Based Long-Term Care Model-Progress Report summary April 1 through November 30,

1987,” San Francisco, CA, 1987.

On Lok Senior Health Services, ‘On Lok Senior

Health Services Awarded $2.2 Million To Help

Others Establish Health Care Programs for the

Elderly,” press release, San Francisco, CA, May 4,

1987.

On Lok Senior Health Services, The Multidisciplinary Team: A Dynamic Approach, prepared by W.

Chin (San Francisco, CA: 1988).

On Lok Senior Health Services, San Francisco, CA,

“Continuation Application for Medicare 222 and

Medicaid 1115 Waivers for On Lok’s Risk-Based

CCODA,” contract report prepared for the California Department of Health Services and the Health

Care Financing Administration, U.S. Department of

Health and Human Services, Baltimore, MD, HCFA

Project No. 95-P-98246, April 1988.

Oriol, W., The Complex Cube of Long-Term Care

(Washington, DC: American Health Planning Association, 1985).

Ortega, S.T, Crutchfield, R.D., and Rushing, W.A.,

‘‘Race Differences in Elderly Personal Well-Being:

Friendship, Family, and Church,” Research on

Aging 5:101-118, 1983.

Ory, M.G., Williams, T.F., Emr, M., et al., “Families, Informal Supports, and Alzheimer’s Disease:

Current Research and Future Agendas,” Research

on Aging 7:623-644, 1985.

Overman, W., and Stondemire, A., “Guidelines for

Legal and Financial Counseling of Alzheimer’s

Disease Patients and Their Families,” American

Journal of Psychiatry 145(12):1495-1500, 1988.

Paralyzed Veterans of America, Veterans’ Health

Care: Actions and Interactions, Final Report (Washington, DC: January 1987).

Paralyzed Veterans of America, A Study of Four

Veterans Administration Medical Districts (Washington, DC: January 1987).

Parker, M., and Secord, L.J., “Private Practice of

Case Management, ” Generations 12(5);54-

57, 1988.

Parlak, B.A., and Higgins, R. P., “The Partnership

Potential: Community Health Centers and Area

Agencies on Aging,” Aging 357:10-13, 1988.

Pearlin, L.I., Turner, H., and Semple, S., “Coping

and the Mediation of Caregiver Stress,” Alzheimer’s Disease Treatment and Family Stress:

650.

651.

652.

653.

654.

655.

656.

657.

658.

659.

660.

661.

662.

663.

664.

Directions for Research, E. Light and B.R. Lebowitz (eds.) (Rockville, MD: U.S. Department of

Health and Human Services, Public Health Service,

Alcohol, Drug Abuse, and Mental Health Administration, National Institute of Mental Health, 1989).

Pennsylvania Department of Aging, “Alzheimer’S

Disease Initiative: Status Report,” Harrisburg, PA,

no date.

Pennsylvania Department of Aging, “LAMP Demonstration Site Program Requirements, Planning

Allocations and LAMP Contract Format for FY

1987-88,” LAMP Bulletin No. 87-1, Harrisburg,

PA, June 1, 1987.

Pennsylvania Department of Aging and Department

of Public Welfare, “Long-Term Care Assessment

and Management program (LAMP) Demonstration,” Harrisburg, PA, no date.

Peres, A., “Is the HMO Act Good for Employers?”

Business and Health 5(4):8-13, 1988.

Perry, S., and Marotta, R.F., “AIDS Dementia: A

Review of the Literature, ’’Alzheimer’s Disease and

Associated Disorders 1(4):221-235, 1987.

Petty, D., and Friss, L., “A Balancing Act of

Working and Caregiving,” Business and Health

4(12):22-26, 1987.

Pfeiffer, E., “Policy Issues in Long-Term Care: A

Model of Transitions,” Journal of the South Carolina Medical Association 82(7) 464-466, 1986.

Phillips, B.R., Kemper, P., and Applebaum, R.A.,

“Case Management Under Channeling,” Health

Services Research 23(1):67-81, 1988.

Phillips, P. D., “The Search for Quality,” Generations 13(1):8-11, 1989.

Piktialis, D. S., Director, Work/Family Elder Directions, Watertown, MA, personal communications,

Jan. 7,1988, Feb. 16,1988, May 1988, and July 14,

1989.

Piktialis, D. S., “The Elder Care Referral Service,”

Generation 12(5):71-72, 1988.

Piktialis, D. S., and Callahan, J., “Organization of

Long-Term Care: Should There Be Single or

Multiple Focal Points for Lang-Term Care Coordination?” The Impact of Technology on Long-Term

Care, J. Grana and D. McCallum (eds.) (Millwood,

VA: Project HOPE Center for Health Affairs, 1986).

Piktialis, D. S., and MacAdam, M., “Experiments

and Demonstrations in Sharing and Coordination,’

Older Veterans: Linking VA and Community Resources, T. Wetle and J.W. Rowe (eds.) (Cambridge, MA: Harvard University Press, 1984).

Pirsig, R. M., Zen and the Art of Motorcycle

Maintenance (New York, NY: Bantam Books,

1974).

Plaska, M., Director, Resource Development, National Association of Community Health Centers,
372 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

665.

666.

667.

668.

569.

670.

671.

672.

673.

674.

675.

676.

Washington, DC, personal communications, Mar.

28, 1989, May 20, 1988, and Oct. 17, 1988.

Podelco, G.V., Executive Director, Eastern Shore

Area Agency on Aging/Community Action Agency,

Onancock, VA, letter to the Office of Technology

Assessment, U.S. Congress, Washington, DC, Aug.

16, 1989.

Polich, C.L., and Iverson, 1.H., “State Preadmission

Screening Programs for Controlling Utilization of

Long-Term Care,’ Health Care Financing Review

9(1):43-49, 1987.

Posey, K. D., Chief of Field Operations Division,

Medical Administration Service, Programs and

Operations Office, Department of Medicine and

Surgery, U.S. Veterans Administration, Washington, DC, personal communication, September 1988.

Poulshock, W.W., and Deimling, G.T., “Families

Caring for Elders in Residence: Issues in the

Measurement of Burden,’ Journal of Gerontology

39(2):230-239, 1984.

Pratt, C., Schmall, V., and Wright, S., “Ethical

Concerns of Family Caregivers to Dementia Patients,” Gerontologist 27(5):632-638, 1987.

Pratt, C., Schmall, V., Wright, S., et al., “The

Forgotten Client: Family Caregivers to Institutionalized Dementia Patients,” Aging, Health, and

Family, T.H. Brubaker (cd.) (Newbury Park, CA:

Sage Publications, 1987b).

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions

(Washington, DC: U.S. Government Printing Office, 1982).

President’s Commission for the Study of Ethical

Problems in Medicine and Biomedical and Behavioral Research, Deciding To Forego Life-Sustaining

Treatment (Washington, DC: U.S. Government

Printing Office, 1983).

Principi, A. J., Deputy Secretary, U.S. Department

of Veterans Affairs, Washington, DC, testimony at

hearing to consider health legislation before the

Committee on Veterans’ Affairs, Senate, U.S.

Congress, Washington, DC, May 18, 1989.

Pruchno, R.A., and Potoshnik, S.L., “Caregiving

Spouses: Physical and Mental Health,” Journal of

the American Geriatrics Society, in press, July

1989.

Pynoos, J., and Stacey, C.A., “Specialized Facilities for Senile Dementia Patients,’ The Dementias:

Policy and Management, M.L.M. Gilhooly, S.H.

Zarit, and J.E. Birren (eds.) (Englewood Cliffs, NJ:

Prentice Hall, 1986).

Quandt, M., Director, Strategic Planning, Office of

the Chief Medical Director, Department of Medicine and Surgery, U.S. Veterans Administration,

677.

678.

679.

680.

681.

682.

683.

684.

685.

686.

687.

688.

689.

690.

691.

Washington, DC, personal communication, Sept. 8,

1988.

Quinn, J., "Seeking Quality Alternatives in CommunityBased programs," Business and Health 3(8):21-24,

1986.

Quinn, J., Segal, J., and Raisz, H., et al. (eds.),

Coordinating Community Services for the Elderly

(New York NY: Springer Publishing Co., 1982)

Rabins, P.V., “Management of Irreversible Dementia,” Psychosomatics 22:591-597, 1981.

Rabins, P.V., ‘Does Reversible Dementia Exist and

Is It Reversible?” Archives of Internal Medicine

148:1905, 1988.

Rabins, P.V., Mace, N.L., and Lucas, M.J., “The

Impact of Dementia on the Family,” Journal of the

American Medical Association 248:333-335, 1982.

Rabins, P. V., Merchant, A., and Nestadt, G., “Criteria for Diagnosing Reversible Dementia Caused by

Depression,” British Journal of Psychiatry 144:488-

492, 1984.

Radecki, S.E., Kane, R.L., Solomon, D.H., et al.,

“Are Physicians Sensitive to the Special Problems

of Older Patients?” Journal of the American

Geriatrics Society 36(8):719-725, 1988.

Radecki, S.E., Kane, R.L., Solomon, D.H., et al.,

“Do Physicians Spend Less Time With Older

Patients?” Journal of the American Geriatrics

Society 36(8):713-718, 1988.

Raschko, R., “Systems Integration at the Program

Level: Aging and Mental Health,” Gerontologist

25(5):460-463, 1985.

Raschko, R., Director, Elderly Services, Spokane

Community Mental Health Center, Spokane, WA,

statement to the OTA Advisory Panel on Methods

of Locating and Arranging Services for Persons

With Dementia, Washington, DC, Jan. 7, 1988.

Raschko, R., Director, Elderly Services, Spokane

Community Mental Health Center, Spokane, WA,

letter to the Office of Technology Assessment, U.S.

Congress, Washington, DC, Mar. 8,1988.

Raschko, R., “Spokane Community Mental Health

Center: Elderly Services,” unpublished mimeo,

Spokane Community Mental Health Center,

Spokane, WA, May 25, 1988.

Raschko, R., Director, Elderly Services, Spokane

Community Mental Health Center, Spokane, WA,

personal communications, Nov. 3, 1988, June 23,

1989, and Sept. 14, 1989.

Rathbone-McCuan, E., Lohn, H., Levenson, J., et

al., “Cost-Effectiveness Evaluation of the Levindale Adult Day Treatment Center,’ Levindale

Geriatric Research Center, Baltimore, MD, 1975.

Rau, C., “Alzheimer’s Disease Education Center

Background Document,” Social and Scientific

Systems, Inc., Bethesda, MD, January 1988.
References .373

692.

693.

694.

695.

696.

697.

698.

699.

700.

701:

702.

Ray, D. C., Raciti, M.A., and Ford, C.V., “Ageism

in Psychiatrists: Associations With Gender, Certification, and Theoretical Orientation,’ Gerontologist

25(5):496-500, 1985.

Ray, S. S., List, N., Clinkscale, R.M., et al., La Jolla

Management Corporation, Columbia, MD, “Assessment of the Current Utilization of C/MHCs by

the Elderly and an Assessment of the Capability of

C/MHCs To Develop Comprehensive CommunityBased Primary Care Health Service Systems for the

Elderly,” prepared for the Bureau of Health Care

Delivery and Assistance, Health Resources and

Services Administration, Public Health Service,

U.S. Department of Health and Human Services,

Rockville, MD, July 1987.

Reagan, M.D., “Physicians as Gatekeepers: A

Complex Challenge,” New England Journal of

Medicine 317(27):1731-1734, 1987.

Reding, M., Haycox, J., and Blass, J., “Depression

in Patients Referred to a Dementia Clinic,” Archives of Neurology 42:894-896, 1985.

Reichel, W., Franch, M. S., and Solon, J., “Survey

Research Guiding Public Policymaking in Maryland: The Case of Alzheimer’s Disease and Related

Disorders,’ Experimental Gerontology 21:439-

448, 1986.

Reifier, B.V., “Alzheimer’s Disease in Nursing

Homes: Current Practice and Implications for Research,’ Mental Illness in Nursing Homes: Agenda

for Research, M.S. Harper and B.D. Lebowitz (eds.)

(Rockville, MD: U.S. Department of Health and

Human Services, Public Health Service, Alcohol,

Drug Abuse, and Mental Health Administration,

National Institute of Mental Health, 1986).

Reifier, B.V., Chairman, Department of Psychiatry

and Behavioral Medicine, Bowman Gray School of

Medicine, NC, statement to the OTA Advisory

Panel on Methods of Locating and Arranging

Services for Persons With Dementia, Washington,

DC, Jan. 7, 1988.

Reifier, B.V., Chairman, Department of Psychiatry

and Behavioral Medicine, Bowman Gray School of

Medicine, NC, personal communication, November

1988.

Reifier, B.V., Cox, G.B., and Hanley, R.J., “Problems of Mentally Ill Elderly as Perceived by

Patients, Families, and Clinicians,” Gerontologist

21(2):165-170, 1981.

Reifier, B.V., and Eisdorfer, C., “A Clinic for the

Impaired Elderly and Their Families,” American

Journal of Psychiatry 137(11):1399-1403, 1980.

Reifier, B.V., Kethley, A., O’Neill, P., et al., “The

Five-Year Experience of a Geriatric Outreach Program for the Elderly,’ American Journal of Psychiatry 139(2):220-223, 1982.

703.

704.

705.

706.

707.

708.

709.

710.

711.

712.

713.

714.

Reifier, B.V., and Larson, E.B., “Alzheimer’s

Disease and Long-Term Care: The Assessment of

the Patient,’’Journal of Geriatric Psychiatry 18(1):9-

26,1985.

Reifier, B.V., Larson, E.B., and Hanley, R., “Coexistence of Cognitive Impairment and Depression in

Geriatric Outpatients,” American Journal of Psychiatry 139(5):623-629, 1982.

Reifier, B.V., Larson, E., and Teri, L., “Dementia of

the Alzheimer’s Type and Depression,” Journal of

the American Geriatrics Society 34(12):855-859,

1986.

Reifier, B.V., Larson, E.B., and Teri, L., “An

Outpatient Geriatric Psychiatry Assessment and

Treatment Service,’ Clinics in Geriatic Medicine,

L.Z. Rubenstein, L.J. Campbell, and R.L. Kane

(eds.) (Philadelphia, PA: W.B. Saunders Co., 1987).

Reifier, B. V., and Orr, N. (eds.), Alzheimer’s

Disease and the Nursing Home: A Staff Training

Manual, prepared for Hillhaven Corp., Washington

State, 1985.

Reilly, D., Leadership Council on the Aging,

“Statement Submitted for the Record,” Maintaining Medicare HMOs: Problems, Protections and

Prospects, hearing before the Select Committee on

Aging, House of Representatives, U.S. Congress,

June 11,1987, Comm. Pub. No. 100-627 (Washington, DC: U.S. Government Printing Office, 1987).

Reilly, D.F., Senior Vice President, National Council on the Aging, “Statement,” Reauthorization of

the Older Americans Act, joint hearing before the

Select Committee on Aging and its Subcommittee

on Human Services, House of Representatives, U.S.

Congress, Sept. 16, 1986, vol. 1, Comm. Pub. No.

99-601 (Washington, DC, U.S. Government Printing Office, 1986).

Reisberg, B., Ferris, S.H., DeLeon, M., et al., “The

Global Deterioration Scale for Assessment of Primary Degenerative Dementia,” American Journal

of Psychiatry 139:1336. 1982.

Reisberg, B., Ferris, S.H., and Franssesn, E., “An

Ordinal Functional Assessment Tool for Alzheimer’s

Type Dementia,” Hospital and Community Psychiatry 36:593-595, 1985.

Respite Report: Dementia Care and Respite Services Program, “19 Centers Picked for Respite

Services Program,’ Respite Report: Dementia Care

and Respite Services Program (published by the

Bowman Gray School of Medicine, Wake Forest

University, Winston Salem, NC) 1(1):1-3, fall 1988.

Rhode Island Legislative Commission on Dementias Related to Aging, “Final Report,” Providence,

RI, May 1, 1984.

Rice, D., Chief, Planning and Program Development Branch, California Department of Aging,
374 ● Confused Minds, Burdened Families: Fniding Help for People With Alzheimer’s & Other Dementias

715.

716.

717.

718.

719.

720.

721.

722.

723.

724.

725.

726.

727.

Sacramento, CA, personal communications, Aug.

24, 1989, and Nov. 14, 1989.

Rienerth, C., Executive Director, Eastern Shore

Rural Health System, Inc., Onancock, VA, personal

communication, Aug. 1, 1989.

Riley, T., “State of Maine,” Building Affordable

Long-Term Care Alternatives: Integrating State

Policy (Washington, DC: National Governors’ Association, 1987).

Robert Wood Johnson Foundation, Dementia Care

and Respite Services Program (Princeton, NJ: July

1987).

Roca, R.P., Klein, L.E., Vogelsand, G., et al.,

“Inaccuracy in Diagnosing Dementia Among Medical Inpatients,’ Clinical Research 30:305A, 1982.

Ross, C., Associate Director for National and

Federal Activities, National Association of State

Mental Health Program Directors, Washington, DC,

personal communication, July 27,1989.

Roth, L.H., Meisel, A., and Lidz, C. W., “Tests of

Competency To Consent to Treatment,” American

Journal of Psychiatry 134:279-284, 1977.

Rowe, J.W., director, Division on Aging, Harvard

Medical School, “Testimony,” Aging Veterans’

Health Care Issues, joint hearing before the Subcommittee on Hospitals and Health Care, Committee on Veterans’ Affairs and the Select Committee

on Aging. House of Representatives, U.S. Congress, Apr. 23, 1985, Veterans’ Affairs Comm.

Serial No. 99-13, Select Comm. on Aging Serial No.

99-501 (Washington, DC: U.S. Government Printing Office, 1985).

Rubenstein, L.Z., “Geriatric Assessment: An Overview of its Impacts,’ Clinics in Geriatric Medicine,

L.Z. Rubenstein, L.J. Campbell, and R.L. Kane

(eds.) (Philadelphia, PA: W.B. Saunders Co., 1987).

Rubenstein, L.Z., “Innovations in Hospital Care for

Elders,” Generations 12(1):65-70, 1987.

Rubenstein, L.Z., Clinical Director, GRECC [Geriatric Research, Education, and Clinical Center], VA

Medical Center, Sepulveda, CA, personal communication, August 1988, and Aug. 4, 1989.

Rubenstein, L.Z., Abrass, I.B., and Kane, R.L.,

“Improved Care for Patients on a New Geriatric

Evaluation Unit,” Journal of the American Geriatrics Society 29(1 1):531-536, 1981.

Rubenstein, L.Z., Josephson, K., Wieland, G.D., et

al., “Geriatric Assessment on a Subacute Hospital

Ward,” Clinics in Geriatric Medicine, L.Z. Rubenstein, L.J. Campbell, and R.L. Kane (eds.) (Philadelphia, PA: W.B. Saunders Co., 1987).

Rubenstein, L.Z., Rhee, L., and Kane, R.L., “The

Role of Geriatric Assessment Units in Caring for the

Elderly: An Analytic Review,” Journal of Gerontology 37(5):513-521, 1982.

728.

729.

730.

731.

732.

733.

734.

735.

736.

737.

738.

739.

740.

Rubin, E.H., Drevets, W.C., and Burke, W.J., “The

Nature of Psychotic Symptoms in Senile Dementia

of the Alzheimer Type,” Journal of Geriatric

Psychiatry and Neurology 1(1):16-19, 1988.

Rubin, E.H., Morris, J. C., and Berg, L., “The

Progression of Personality Changes in Senile Dementia of the Alzheimer’s Type,” Journal of the

American Geriatrics Society 35(8):721-725, 1987.

Rubin, S.M., Glasser, M.L., and Werckle, M.A.,

“The Examination of Physicians’ Awareness of

Dementing Disorders,” Journal of the American

Geriatrics Society 35(12):1051-1058, 1987.

Ruchlin, H. S., Morris, J.N., and Eggert, G.M.,

“Management and Financing of Long-Term Care

Services, 6New England Journal of Medicine 306(2):101-

106, 1982.

Rudin, S.E., “Quality Assurance: The Role of a

Chief Executive Officer in a Long-Term Care

Setting,” Danish Medical Bulletin, Gerontology

Special Supplement Series No. 5--Quality of LongTerm Care, pp. 60-63, 1987.

Ruther, M., and Helbing, C., “Use and Cost of

Home Health Agency Services Under Medicare,”

Health Care Financing Review 10(1):105-108, Fall

1988.

Sabatino, C.P., “Home Care Quality: Exploring the

Unknown: Part I,” Bifocal 7(3):5-7, 1986.

Sabatino, C.P., “Home Care Quality: Exploring the

Unknown: Part II,” Bifocal 7(4):5-7, 1986.

Sabatino, C.P., ‘Quality Assurance in Home Care,”

presented to “Meeting the Challenge of Home

Care,” conference sponsored by the Arizona State

University, College of Nursing, Phoenix, AZ, Nov.

18, 1987.

Sabatino, C.P., “HomeCare Quality,” Generations

13(1):12-16, 1989.

Sabatino, C.P., Associate Staff Director, American

Bar Association, Commission on Legal Problems of

the Elderly, Washington, DC, personal communication, Feb. 3, 1989.

Sakamoto, Y, Coordinator, Nikkei Family Counseling program, Little Tokyo Service Center, Los

Angeles, CA, personal communication, Dec. 15,

1988.

Sanborn, B., ‘‘Dementia Day Care: A Prototype for

Autonomy in Long-Term Care,” American Journal

of Alzheimer’s Care and Related Disorders and

Research 3(4):23-33, 1988.

740a. Scharlach. A.E.. “A Comparison of Employed

741.

Caregivers of Cognitively Impaired and Physically

Impaired Elderly Persons,” Research in Aging

11(2):225-243, 1981.

Schlesinger, M., Moran, A., and Zangwill, L.,

“Utilization of the VA by Elder Veterans: An

Empirical Analysis,” Older Veterans: Linking VA

and Community Resources, T. Wetle and J.W.
References ● 375

742.

743.

744.

745.

746.

747.

748.

749.

750.

751.

752.

753.

754.

Rowe (eds.) (Cambridge, MA: Harvard University

Press, 1984).

Schlesinger, M., Wetle, T, and Morse, J.H., “Improving Care of the Olde Veteran: Issues and

Options,” Older Veterans: Linking VA and Community Resources, T. Wetle and J.W. Rowe (eds.)

(Cambridge, MA: Harvard University Press, 1984).

Schmidt, G.L., and Keyes, B., “Group Psychotherapy With Family Caregivers of Demented Patients,” Gerontologist 25(4):347-350, 1985.

Schmidt, W.C., “Guardianship: Public and Private,’ Legal and Ethical Aspects of Health Care for

the Elderly, M.B. Kapp, H.E. Pies, A.E. Doudera, et

al. (eds.) (Ann Arbor, MI: Health Administration

Press, 1985).

Schneider, B., “Care Planning: The Core of Case

Management,” Generations 12(5):16-18, 1988.

Schneider, B., Consultant, Elverson, PA, personal

communications, June 23, 1988, and Nov. 5, 1988.

Schulke, K., speech to “The National Conference

on Home Care Quality,” sponsored by the Office of

the Assistant Secretary for Planning and Evaluation,

U.S. Department of Health and Human Services,

Washington, DC, June 1, 1989.

Schultz, R., Biegel, D., Morycz, R., et al., “Psychological Paradigms for Understanding Caregiving,”

Alzheimer’s Disease Treatment and Family Stress:

Directions for Research, E. Light, and B.D. Lebowitz (eds.) (Rockville, MD: U.S. Department of

Health and Human Services, Public Health Service,

Alcohol, Drug Abuse, and Mental Health Administration, National Institute of Mental Health, 1989).

Scott, J.P., Roberto, K.A., and Hutton, J.T., “Families of Alzheimer’s Victims: Family Support to the

Caregivers,” Journal of the American Geriatrics

Society 34(5):348-354, 1986.

Segall, M., and Wykle, M., “The Black Family’s

Experience With Dementia,’ Aging Network News

5(3):7,16, July 1988.

Seltzer, B., Associate Director for Clinical Services,

Geriatric Research, Education, and Clinical Center,

E.N. Rogers Memorial Veterans Hospital, Bedford

MA, personal communication, Aug. 3, 1988.

Seltzer, B., Rheaume, Y., Volicer, L., et al., “The

Short-Term Effects of In-Hospital Respite on the

Patient With Alzheimer’s Disease,” Gerontologist

28(1):121-124, 1988.

Seltzer, M.M., Ivry, J., and Litchfied, J., “Family

Members As Case Managers: Partnership Between

the Formal and Informal Support Networks,”

Gerontologist 27(6):722-728, 1987.

Seltzer, M.M., Simmons, K., Ivry, J., et al., “AgencyFamily Partnerships: Case Management of Services

for the Elderly,’ Journal of Gerontological Social

Work 7:57-71, 1984.

755.

756.

757.

758.

759.

760.

761.

762.

763.

764.

765.

766.

767.

Shaughnessy, P.W., “Quality of Nursing Home

Care,” Generations 13(1):17-20, 1989.

Silverstein, N.M., and Hyde, J., “Utilizing an

Existing Service System To Aid Alzheimer’s Clients and Their Families: The Massachusetts Home

Care Network,” American Journal of Alzheimer’s

Care and Research 2(2):30-36, 1987.

Silverstone, B., and Burack-Weiss, A., Social Work

Practice With the Frail Elderly and Their Families:

The Auxiliary Function Model (Springfield, IL:

Charles C. Thomas, 1983).

Simmons, K.H., Ivry, J., and Seltzer, M.M., “AgencyFamily Collaboration,” Gerontologist 25:343-346,

1985.

Siu, A.L., “The Quality of Medical Care Received

by Older Persons,” Journal of the American

Geriatrics Society 35(12):1084-1091, 1987.

Skurla, E., Rogers, J. C., and Sunderland, T, “Direct Assessment of Activities of Daily Living in

Alzheimer’s Disease,” Journal of the American

Geriatrics Society 36(2):97-103, 1988.

Sloane, P.D., Associate Professor, Department of

Family Medicine, University of North Carolina at

Chapel Hill, letter to the Office of Technology

Assessment, U.S. Congress, Washington, DC, Apr.

12, 1988.

Smerglia, V, Deimling, G.T, and Barresi, C.M.,

“Black/White Family Comparisons in Helping and

Decision-Making Networks of Impaired Elderly,”

draft, Benjamin Rose Institute, Cleveland, OH, no

date.

Smith, M., update of “Mental Health of the Rural

Elderly Outreach Program: A Unique Health Care

Delivery System,” University of Iowa College of

Nursing, Iowa City, IA, 1989.

Smyth, K., Associate Director for Care Program

Development and Evaluation, Alzheimer’s Center,

University Hospitals of Cleveland, Cleveland, OH,

personal communication, Sept. 13, 1988.

Social and Scientific Systems, Bethesda, MD,

“Alzheimer’s Disease Education Center Planning

Conference: Summary Report,” prepared for the

National Institute on Aging, National Institutes of

Health, Public Health Service, U.S. Department of

Health and Human Services, Bethesda, MD, for a

meeting held Jan. 25-26, 1988, no date.

Spaner, F.E., Rockville, MD, “A Brief History of

the Community Mental Health Centers Program in

the United States,” prepared for the Center for

Studies of the Mental Health of the Aging, National

Institute of Mental Health, Alcohol, Drug Abuse

and Mental Health Administration, U.S. Department of Health, Education and Welfare, Rockville,

MD, Feb. 11, 1985.

Spencer, B., and Gilbert, M.H., “Transition to the

Nursing Home,” A Better Life, D.H. Coons, L.
376 ● Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

768.

769.

770.

771.

772.

773.

774.

775.

776.

777.

778.

779.

780.

Metzelaar, A. Robinson, et al. (eds.) (Columbus,

OH: The Source for Nursing Home Literature,

1986).

Steffen, G.E., “Quality Medical Care,” Journal of

the American Medical Association 260(1):56-61,

1988.

Steinberg, R.M., and Carter, G., Case Management

and the Elderly (Lexington, MA: Lexington Books,

D.C. Heath& Co., 1983).

Steinitz, L.Y., “The Local Church as Support for

the Elderly,” Journal of Gerontological Social

Work 4:43-53, 1981.

Stenholm, W.W., “Statement,” The American Rural

Health Care System: What Should It Be, and How

Do We Sustain It? joint hearing before the House

Select Committee on Aging and the Task Force on

the Rural Elderly of the House Select Committee on

Aging, June 4, 1987, Comm. Pub. No. 100-636

(Washington, DC: U.S. Government Printing Office, 1987).

Stockman, A.S., and Delworth, U., “Support Resources Endorsed by Rural Women,’ draft, University of Iowa, Iowa City, IA, 1989.

Stockton, P. S., and Rabin, D.L., “Growth and

Change in the Funding and Provision of Home Care

for the Elderly,” Journal of Medical Practice

Management 2(4):225-233, 1987.

Stommel, M., Given, C.W., and Given, B.A., “A

Description of Family Members and Their Patients

With Alzheimer’s Disease,” unpublished draft,

Michigan State University, Lansing, MI, no date.

Stone, R., and Newcomer, R., “The State Role in

Board and Care Housing,’ Long-Term Care of the

Elderly: Public Policy Issues, C. Barrington, R.J.

Newcomer, E. Estes, et al. (eds.) (Newbury Park

CA: Sage Publications, 1985).

Storfjell, J.L., “A Quantification Model for Home

Health Care Nursing Visits,” unpublished Ph.D.

dissertation, University of Michigan, Ann Arbor,

MI, 1987.

Sundram, C.J., “Informed Consent for Major Medical Treatment of Mentally Disabled People,” New

England Journal of Medicine 318(21):1368-1373,

1988.

Sussman, M.B., “Family, Bureaucracy, and the

Elderly Individual: An Organizational-Linkage Perspective,” Family, Bureaucracy, and the Elderly, E.

Shanas and M.B. Sussman (eds.) (Durham, NC:

Duke University Press, 1977).

Swingler, L., Medical Social Worker, Alzheimer’s

Center, VA Medical Center, Coatesville, PA, personal communication, May 23, 1989.

Takeda, S., Research Associate, On Lok Senior

Health Services, San Francisco, CA, personal communication, March 1988.

781.

782.

783.

784.

785.

786.

787.

788.

789.

790.

791.

792.

793.

794.

795.

796.

797.

Tanzer, J., and Nudelman, J., “Medicare and

HMOs: A Marriage of Convenience,” Business and

Health 4(10):34-36, 1987.

Taylor, R.J., and Chatters, L.M., “Patterns of

Informal Support to Elderly Black Adults: Family,

Friends, and Church Members,” Social Work

31(6):432-438, 1986.

Tell, E.J., Cohen, M.A., and Wallack, S.S., “Life

Care at Home: A New Model for Financing and

Delivering Long-Term Care,” Inquiry 24(3):245-

252, 1987.

Tell, E.J., Wallack, S. S., and Cohen, M.A., “New

Directions in Life Care: An Industry in Transition,”

Milbank Quarterly 65(4):551-574, 1987.

Tennessee Department of Mental Health and Mental

Retardation, “Executive Summary: Plan for Alzheimer’s Disease, Nashville, TN, Jan. 17, 1989.

Tennessee Task Force To Study Alzheimer’s Disease, “Report of the Task Force Created by HJR

585 To Study Alzheimer’s Disease,” Nashville,

TN, no date.

Teri, L., Larson, E. B., and Reifier, B.V., “Behavioral Disturbance in Dementia of the Alzheimer’s

Type,” Journal of the American Geriatrics Society

36(1):1-6, 1988.

Teusink, J.P., and Mahler, S., “Helping Families

Cope With Alzheimer’s Disease,” Hospital and

Community Psychiatry 35:152-156, 1984.

Texas Council on Alzheimer’s Disease and Related

Disorders, Texas Council on Alzheimer’s Disease

and Related Disorders--Biennial Report (Austin,

TX: Texas Department of Health, September 1988).

Texas Long-Term Care Coordinating Council for

the Elderly, “Alzheimer’s Task Force Report,”

Austin, TX, Oct. 31, 1985b.

Theilheimer, L., Senior program Specialist, American Association of Retired Persons, Washington,

DC, personal communication, Sept. 21, 1988.

Thernstron, S., The Harvard Encyclopedia of American Ethnic Groups (Cambridge, MA: Harvard

University Press, 1980).

Tippie, G., Manager, Education programs, American Association of Homes for the Aging, Washington, DC, personal communication, Aug. 29, 1988.

Tomlinson, B.E., Blessed, G., and Roth, M., “Observations on the Brains of Demented Old People,’

Journal of Neurological Science 11:205, 1970.

Torres, M. S., “Quality Assurance of Brokered

Services,” Quality Review Bulletin 14(6):187-192,

1988.

Torres-Gil, F., and Pynoos, J., “Imng-Term Care

Policy and Interest Group Struggles,” Gerontologist 26(5):488-495, 1986.

Travelers Companies, “Travelers Employee Caregiver Survey,” Hartford, CT, June 1985.
References ● 377

798.

799.

800.

801.

802.

803.

804.

805.

806.

807.

808.

809.

810.

811.

812.

Tymchuk, A.J., Ouslander, J.G., Rahbar, B., et al.,

“Medical Decisionmaking Among Elderly People

in Long-Term Care,’ Gerontologist 28(Suppl.):59-

63,1988.

United Seniors Health Cooperative, “High Tech

Meets High Touch,” United Seniors Health Report

3(2):7, 1988.

United Seniors Health Cooperative, “Spotlight on

Transportation,” United Seniors Health Report

3(5):1, 1988.

University of California, “A Comparative Evaluation of the Multipurpose Senior Services Project—

1981: A Final Report,” Berkeley, CA, January

1984.

University of New Mexico, Institute of Public Law,

“Medical Treatment Guardian Program,” Albuquerque, NM, Oct. 12, 1988.

University of Southern Florida, Division of Geriatric Medicine, and the Suncoast Gerontology Center,

“USF Memory Disorder Clinic,” brochure, Tampa,

FL, no date.

U.S. Conference of Mayors and National Association of Counties, Graying of the Suburbs: Policy

Implications for Local Officials (Washington, DC:

February 1988).

U.S. Congress, Congressional Budget Office, Veterans Administration Health Care: Planning for

Future Years (Washington, DC: U.S. Government

Printing Office, April 1984).

U.S. Congress, General Accounting Office, The

Elderly Remain in Need of Mental Health Services,

GAO/HRD-82-112 (Washington, DC: Sept. 16,

1982).

U.S. Congress, General Accounting O&ice, The

Elderly Should Benefit From Expanded Home

Health Care But Increasing These Services Will Not

Insure Cost Reductions, GAO/IPE-83-l (Washington, DC: Dec. 7, 1982).

U.S. Congress, General Accounting Office, States

Have Made Few Changes in Implementing the

Alcohol, Drug Abuse, and Mental Health Services

Block Grant, GAO/HRD-84-52 (Washington, DC:

June 6, 1984).

U.S. Congress, General Accounting Office, Medicare: Issues Raised by Florida Health Maintenance

Organization Demonstrations, GAO/HRD-86-97

(Washington, DC: July 1986).

U.S. Congress, General Accounting Office, Federal

Benefit Programs: A Profile, GAO/HRD 86-14

(Washington, DC: Oct. 17, 1986).

U.S. Congress, General Accounting Office, Need To

Strengthen Home Health Care Payment Controls

and Address Unmet Needs, GAO/HRD-87-9 (Washington, DC: December 1986).

U.S. Congress, General Accounting Office, Medicaid: Interstate Variations in Benefits and Expendi813.

814.

815.

816.

817.

818.

819.

820.

821.

822.

tures, GAO/HRD-87-67BR (Washington, DC: May

1987).

U.S. Congress, General Accounting Office, Medicare and Medicaid: Stronger Enforcement of Nursing Home Requirements Needed, GAO/HRD-87-

113 (Washington, DC: July 1987).

U.S. Congress, General Accounting Office, Medicare: Preliminary Strategies for Assessing Quality

of Care, GAO/PEMD-87-15BR (Washington, DC:

July 1987).

U.S. Congress, General Accounting Office, VA

Health Care: Assuring Quality Care for Veterans in

Community and State Nursing Homes, GAO/HRD88-18 (Washington, DC: November 1987).

U.S. Congress, General Accounting Office, Board

and Care: Insufficient Assurances That Residents’

Needs Are Identified and Met, GAO/HRD-89-50

(Washington, DC: February 1989).

U.S. Congress, House of Representatives, Veterans’

Benefits and Services Act of 1988, Conference

Report, H. Rpt. 100-578 (Washington, DC: U.S.

Government Printing Office, 1988).

U.S. Congress, House of Representatives, Committee on Education and Labor, Subcommittee on

Human Resources, and Senate Special Committee

on Aging, Compilation of the Older Americans Act

of 1965 as Amended Through December 31, 1988,

Serial Nos. 101-A/101-B (Washington, DC: U.S.

Government Printing Office, 1989).

U.S. Congress, House of Representatives, Committee on Energy and Commerce, Subcommittee on

Health and the Environment, Medicaid Source

Book: Background Data and Analysis, prepared by

the Congressional Research Service, Comm. Print

No. 1OO-AA (Washington, DC: U.S. Government

Printing Office, November 1988).

U.S. Congress, House of Representatives, Committee on Veterans’ Affairs, Subcommittee on Hospitals and Health Care, and Select Committee on

Aging, Aging Veterans’ Health Care Issues, hearing

Apr. 23, 1985, Veterans’ Affairs Comm. Serial No.

99-13, Select Comm. on Aging Serial No; 99-501

(Washington, DC: U.S. Government Printing Office, 1985).

U.S. Congress, House of Representatives, Select

Committee on Aging, The “Black Box” of Home

Care Quality, prepared by the American Bar

Association, Comm. Pub. No. 99-573 (Washington,

DC: U.S. Government Printing Office, August

1986).

U.S. Congress, House of Representatives, Select

Committee on Aging, Subcommittee on Health and

Long-Term Care, Building a Long-Term Care

Policy: Home Care Data and Implications, Comm.

Pub. No. 98-484 (Washington, DC: U.S. Government Printing Office, 1985).
378 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

823.

824.

825.

826.

827.

828.

829.

830.

831.

832.

833.

834.

835.

U.S. Congress, Library of Congress, Congressional

Research Service, “Medical Care Programs of the

Veterans Administration,” Washington, DC, May

16,1983 (updated Jan. 31, 1986).

U.S. Congress, Library of Congress, Congressional

Research Service, “Adult Day Care: Background,

Funding, Cost-Effectiveness, Issues, and Recent

Legislation,” Washington, DC, June 1, 1986.

U.S. Congress, Library of Congress, Congressional

Research Service, “Community Health Centers and

the Primary Care Block Grant,” prepared by J.

Gray, Education and Public Welfare Division,

Washington, DC, Mar. 21, 1986 (updated Sept. 17,

1986).

U.S. Congress, Library of Congress, Congressional

Research Service, Medicaid Eligibility for the

Elderly in Need of Long-Term Care, prepared by E.

Neuschler, Washington, DC, September 1987.

U.S. Congress, Library of Congress, Congressional

Research Service, “Medicare: Risk Contracts With

Health Maintenance Organizations and Competitive Medical Plans,” Washington, DC, Feb. 16,

1988.

U.S. Congress, Library of Congress, Congressional

Research Service, Financing and Delivery of LongTerm Care Services for the Elderly (Washington,

DC: May 25, 1988).

U.S. Congress, Library of Congress, Congressional

Research Service, “Older Americans Act Programs: Brief Summary and Funding Levels,”

Washington, DC, Oct. 28, 1988.

U.S. Congress, Office of Technology Assessment,

Life-Sustaining Technologies and the Elderly, OTABA-306 (Washington, DC: U.S. Government Printing Office, 1987).

U.S. Congress, Office of Technology Assessment,

Losing a Million Minds: Confronting the Tragedy

of Alzheimer’s Disease and Other Dementias,

OTA-BA-323 (Washington, DC: U.S. Government

Printing Office, 1987).

U.S. Congress, Office of Technology Assessment,

The Quality of Medical Care: Information for

Consumers, OTA-H-386 (Washington, DC: U.S.

Government Printing Office, 1988).

U.S. Congress, Office of Technology Assessment,

Institutional Protocols for Decisions About LifeSustaining Treatment, OTA-BA-389 (Washington,

DC: U.S. Government Printing Office, 1988).

U.S. Congress, Senate, Committee on Veterans’

Affairs, Omnibus Veterans’ Benefits and Services

Act of 1987, S. Rpt. 100-215 (Washington, DC: U.S.

Government Printing Office, 1987).

U.S. Congress, Senate, Special Committee on

Aging, Nursing Home Care: The Unfinished Agenda

Serial No. 99-J (Washington, DC: U.S. Government

Printing Office, May 1986).

836.

837.

838.

839.

840.

841.

842.

843.

844.

U.S. Congress, Senate, Special Committee on

Aging, The Medicare Home Care Benefit: Access

and Quality, hearing in Lakewood, NJ, before the

Special Committee on Aging, U.S. Senate, Aug. 3,

1987, Serial No. 100-10 (Washington, DC: U.S.

Government Printing Office, 1987).

U.S. Congress, Senate, Special Committee on

Aging, Developments in Aging: 1989 Vol. 2—

Appendixes (Washington, DC: U.S. Government

Printing Office, 1990).

U.S. Department of Commerce, Bureau of the

Census, Money Income and Poverty Status of

Families and Persons in the United States, 1986,

Current Population Reports, Series P-60, No. 157

(Washington, DC: U.S. Government Printing Office, July 1987).

U.S. Department of Health and Human Services,

Health Care Financing Administration, “Report to

Congress: The Impact of the Medicare Hospital

Prospective Payment System: 1986 Annual Report,” Health Care Financing Review 10(3):16-

161, 1989.

U.S. Department of Health and Human Services,

Health Care Financing Administration, Office of

Prepaid Health Care, “Operational Report: Private

Health Plan Option,’ mimeo, Baltimore, MD, May

1, 1988.

U.S. Department of Health and Human Services,

Health Care Financing Administration, Office of

Research and Demonstrations, Report to Congress:

Evaluation of the Social/HMO Demonstration,

HCFA Pub. No. 89-03283 (Baltimore, MD: July

1989).

U.S. Department of Health and Human Services,

Public Health Service, Alcohol, Drug Abuse and

Mental Health Administration, National Institute of

Mental Health, Epidemiology and Psychopathology

Research Branch, unpublished prevalence data on

people living alone, rates of severe cognitive

impairment from the Epidemiologic Catchment

Area Program, Rockville, MD, 1988.

U.S. Department of Health and Human Services,

Public Health Service, Health Resources and Services Administration, Bureau of Health Care and

Delivery Assistance, “primary Care: Community

Health Center Program,” mimeo, Rockville, MD,

1986.

U.S. Department of Health and Human Services,

Public Health Service, Health Resources and Services Administration, Bureau of Health Care Delivery Assistance, unpublished table summarizing

personnel in Section 330 Community Health Centers as of Apr. 27, 1986, provided to the Office of

Technology Assessment by D. Cavenaugh, National

Association of Community Health Centers, Washington, DC, 1988.
References .379

845. U.S. Department of Health and Human Services,

Public Health Service, National Center for Health

Statistics, “Health Indicators for Hispanic, Black

and White Americans,’ data from the National

Health Interview Survey, Series 10, No. 148,

Hyattsville, MD, September 1984.

846. U.S. Department of Health and Human Services,

Public Health Service, National Center for Health

Statistics, “Use of Nursing Homes by the Elderly:

Preliminary Data From the 1985 National Nursing

Home Survey,” Advancedata, No. 135, Hyattsville,

MD, May 14, 1987.

847. U.S. Department of Health and Human Services,

Public Health Service, National Institutes of Health,

“Differential Diagnosis of Dementing Diseases,”

NIH Consensus Development Conference Statement 6(11):1-9, July 6-8, 1987.

848. U.S. Department of Health and Human Services,

Public Health Service, National Institutes of Health,

‘Geriatric Assessment Methods for Clinical Decisionmaking,” NIH Consensus Development Conference Statement 6(13):1-6, Oct. 19-21,1987.

849. U.S. Department of Health and Human Services,

Public Health Service, National Institutes of Health,

National Institute on Aging, “Alzheimer’s Disease

Education and Referral Center: Statement of Work,”

Bethesda, MD, no date.

850. U.S. Department of Health and Human Services,

Public Health Service, National Institutes of Health,

National Institute on Aging, written comments on

the Alzheimer’s Disease Education and Referral

Center, Bethesda, MD, Aug. 14, 1989.

851. U.S. Department of Health and Human Services,

Office of Human Development Services, Administration on Aging, Vol. I: Alzheimer’s Disease

Handbook, by D.A. Lindeman, April 1984; Vol. II:

State and Area Agency Instructional Guide, by

Aging Health Policy Center, UCSF, April 1984;

Vol. III: Alzheimer’s Family Support Groups: A

Manual for Group Facilitators, by L. Middleton,

1984; Vol. IV: Working With Families of Dementia

Victims: A Treatment Manual, by S.H. Zarit, N.K.

Orr, and J.M. Zarit, 1983.

852. U.S. Department of Health and Human Services,

Office of the Inspector General, “Home Health

Aide Services for Medicare Patients,’ draft, Washington, DC, April 1987.

853. U.S. Department of Health and Human Services,

Office of the Inspector General, “Community

Systems Development Under the Older Americans

Act,” Washington, DC, August 1987.

854. U.S. Veterans Administration, Caring for the Older

Veteran (Washington, DC: U.S. Government Printing Office, July 1984).

855. U.S. Veterans Administration, Dementia: Guidelines for Diagnosis and Treatment (Washington,

DC: U.S. Veterans Administration, October 1985).

856. U.S. Veterans Administration, Administrator of

Veterans Affairs, Annual Report, 1986 (Washington, DC: June 1987).

857. U.S. Veterans Administration, Administrator of

Veterans Affairs, Annual Report, 1987 (Washington, DC: June 1988).

858. U.S. Veterans Administration, Department of Medicine and Surgery, “Circular 10-84-141 on Social

Work Service Responsibility in Discharge Planning,” Washington, DC, Aug. 21, 1984.

859. U.S. Veterans Administration, Department of Medicine and Surgery, “Circular 10-85-78 on Coordination of Veterans Administration Health Care Services With State and Local Programs,’ Washington,

DC, May 14, 1985.

860. U.S. Veterans Administration, Department of Medicine and Surgery, Report on Alternatives to Institutional Care (Washington, DC: U.S. Veterans Administration, January 1988.

861. Vane, R., “The Latino Elderly: A Status Report,”

Policy Issues Concerning the Minority Elderly:

Final Report (San Francisco, CA: Human Resources Corporation, 1978).

862. Valle, R., “Natural Support Systems, Minority

Groups, and the Late Life Dementias: Implications

for Service Delivery, Research, and Policy,” Clinical Aspects of Alzheimer’s Disease and Senile

Dementia, N.E. Miller and G. Cohen (eds.) (New

York, NY: Raven Press, 1981).

863. Valle, R., “Outreach to Ethnic Minorities With

Alzheimer’s Disease: The Challenge to the Community,” presented to the First Interdisciplinary

Grand Rounds: Alzheimer’s Disease and Ethnic

Populations, Cleveland, OH, Apr. 2, 1987.

864. Vane, R., “Cultural and Ethnic Issues in Alzheimer’s Disease Family Research,” Alzheimer’s

Disease Treatment and Family Stress: Directions

for Research, E. Light and B. Lebowitz (eds.)

(Rockville, MD: U.S. Department of Health and

Human Services, Public Health Service, Alcohol,

Drug Abuse, and Mental Health Administration,

National Institute of Mental Health, 1989).

865. Vane, R., Professor, San Diego State University,

San Diego, CA, personal communications, June 21,

1988, May 5, 1989, Aug. 18, 1989, and Aug. 29,

1989.

866. Vane, R., Birba, L., Yelder, J., et al., “Linking of

Ethnic Minority Elderly With Dementia to LongTerm Care Services,” contract report prepared for

the Office of Technology Assessment, U.S. Congress, Washington, DC, 1989.

867. Vane, R., and Mendoza, I., The Elder Latino (San

Diego, CA: campanile Press, 1978).

868. Van Hook, R.T, “Statement,” The American Rural

Health Care System: What Should It Be, and How

89-150 – 90 - 13
380 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

869.

870.

871.

872.

873.

874.

875.

876.

877.

878.

879.

880.

Do We Sustain It? joint hearing before the Select

Committee on Aging and its Task Force on the

Rural Elderly, House of Representatives, U.S.

Congress, Washington DC, June 4, 1987, Comm.

Pub. No. 100-636 (Washington, DC: U.S. Government Printing Office, 1987.

Veterans Administration Medical Center, Extended

care Service, Coatesville, PA, “Guidelines for

Geriatric Evaluation Unit,” 1987.

Virginia Commission on Alzheimer’s Disease and

Related Disorders, “Report of the Commission on

Alzheimer’s Disease and Related Disorders Pursuant to HJR 134 to the Governor and the General

Assembly of Virginia,” House Document No. 34,

Richmond, VA, January 1986.

Virginia Commission on AIzheimer’s Disease and

Related Disorders, “Report of the Commission on

Alzheimer’s Disease and Related Disorders Pursuant to HJR 134 to the Governor and the General

Assembly of Virginia,” House Document No. 33,

Richmond, VA, January 1987.

Visiting Nurse Association of Allegheny County,

contract with the Allegheny County Institution

District for the provision of services for the Pennsylvania Long-Term Care Assessment Management

Program, Pittsburgh, PA, July 1, 1986.

Visiting Nurse and Home Care, Inc., VNA Health

Resources, Inc., and VNA Fund, Inc., VNA Group,

Inc., Annual Report 1987 (Plainville, CT: 1987).

Vitaliano, P.P., Naiuro, R.D., Ochs, H., et al., “A

Model of Burden in Caregivers of DAT Patients,”

Alzheimer’s Disease Treatment and Family Stress:

Directions for Research, E. Light and B.D. Lebowitz (eds.) (Rockville, MD: U.S. Department of

Health and Human Services, Public Health Service,

Alcohol, Drug Abuse, and Mental Health Administration, National Institute of Mental Health, 1989).

Vladeck, B., Unloving Care (New York, NY: Basic

Books, 1980).

Vladeck, B., ”The Changing Health Care Financing

and Delivery Systems,” Building Affordable Long

Term Care Alternatives: Integrating State Policy

(Washington, DC: National Governors’ Association, 1987).

Vladeck, B., “Quality Assurance Through External

Controls,” Inquiry 25:100-107, 1988.

Volicer, L., Fabiazewski, K. J., Rheaume, Y. L., et al.

(eds.), Clinical Management of Alzheimer’s Disease (Rockville, MD: Aspen Publishers, Inc., 1988).

Von Behren, R., Adult Day Care in America:

Summary of a National Survey (Washington, DC:

National Council on the Aging, Inc. and the

National Institute on Adult Daycare: October 1986).

Waldo, D.R., Levit, K.R., and Lazenby, H., “National Health Expenditures, 1985,” Health Care

Financing Review 8(1):1-21, 1986.

881.

882.

883.

884.

885.

886.

887.

888.

889.

890.

891.

892.

Walker, H.F., Assistant to the Director, National

Association of State Units on Aging, “Statement,”

Reauthorization of the Older Americans Act, joint

hearing before the Select Committee on Aging and

its Subcommittee on Human Services, House of

Representatives, U.S. Congress, Sept. 16,1986, vol.

1, Comm. Pub. No. 99-601 (Washington, DC: U.S.

Government Printing Office, 1986).

Wanamaker, J.F., Deputy Director of Legislative

Affairs, The Retired Officers Association, Washington, DC, “Statement,” Health Care Services for

Aging Veterans, hearing before the Subcommittee

on Oversight and Investigations, Committee on

Veterans’ Affairs, House of Representatives, U.S.

Congress, Apr. 13, 1989, Serial No. 101-8 (Washington, DC: U.S. Government Printing Office,

1989).

Ward, R. A., and Bryant, E., “A Case Study of HMO

Medicare Enrollment,” Gerontologist 26(6)Y565-

662, 1986.

Warshauer, J., “Deciding on Placement for the

Alzheimer Patient: One of the Most Difficult

Personal Decisions,” Understanding Alzheimer’s

Disease, M.K. Aronson (cd.) (New York, NY:

Charles Scribner & Sons, 1988).

Washington Consumers’ Checkbook, “Hospitals,”

Washington Consumers’ Checkbook 6(3):13-27,

1987.

Wasow, M., “Therapeutic vs. Supportive Interventions,’ PRISMS: A Look at Intervention in an

Alzheimer’s Disease Day Hospital Program, I.

Winogrond (cd.) (Milwaukee, WI: Medical College

of Wisconsin, Milwaukee Long-Term Care Gerontology Center, 1985).

Wasow, M., “Support Groups for Family Caregivers of Patients With Alzheimer’s Disease, ”

Social Work 131(2):93-97, 1986.

Watts, D. T., Cassel C. K., and Howell, T, “Dangerous Behavior in a Demented Patient, ” Journal of

the American Geriatrics Society, ” 37(7):658-662,

1989.

Waxman, H.M., Career, E.A., and Klein, M.,

“Underutilization of Mental Health Professionals

by Community Elderly,” Gerontologist 24(1):23-

30, 1984.

Weil, J.B., “Case Management and Long-Term

Care Insurance,” Generations 12(5):45-46, 1988.

Weil, M., “Key Components in providing Efficient

and Effective Services,” Case Management in

Human Service Practice, M. Weil and J.M. Karls

(eds.) (San Francisco: CA: Jossey-Bass, 1985).

Weil, M., and Karls, J. M., “Preface,” Case Management in Human Service Practice, M. Weil and

J.M. Karls (eds.) (San Francisco, CA: Jossey-Bass,

1985).
References .381

893. Weil, M., and Karls, J.M., “Historical Origins and

Recent Developments,” Case Management in Human

Service Practice, M. Weil and J.M. Karls (eds.) (San

Francisco, CA: Jossey-Bass, 1985).

894. Weiler, P.G., Lubben, J.E., and Chi, I., Center for

Aging and Health, Department of Community

Health, University of California, Davis, CA, “Evaluation of the Preventive Health Care for the Aging

Program (PHCAP),” contract report prepared for

the California Department of Health Services,

Contract No. 85-87166, Sacramento, CA, Dec. 31,

1987.

895. Weintraub, S., Baratz, R., and Mesulam, M.M.,

“Daily Living Activities in the Assessment of

Dementia,” Alzheimer’s Disease: A Report of

Progress, S. Corkin, K.L. Davis, J.H. Growden, et

al. (eds.) (New York, NY: Raven Press, 1982).

896. Weissert, W.G., “Seven Reasons Why It Is So

Difficult To Make Community-Based Long-Term

Care Cost-Effective,” Health Services Research

20(4):423-433, 1985.

897. Weissert, W.G., “Hard Choices: Targetting LongTerm Care to the ‘At Risk’ Aged,” Journal of

Health Politics, Policy, and Law 11(3):463-481,

1986.

898. Weissert, W.G., “The National Channeling Demonstration: What We Knew, Know Now, and Still

Need to Know,’ ’Health Services Research23(l):175-

187,1988.

899. Welch, P., “IPAs Emerge on the HMO Forefront,”

Business and Health 5(4):14-16, 1988.

900. Westbrook, G.J., “Alternatives to Guardianship

Emerging,” The Aging Connection 8(5):8, 1987.

901. Wetle, T.T, “Ethical Aspects of Decisionmaking

for and With the Elderly,” Legal and Ethical

Aspects of Health Care for the Elderly, M.B. Kapp,

H.E. Pies, and A.E. Doudera (eds.) (Ann Arbor, MI:

Health Administration Press, 1985).

901a. Wetle, T., and Rowe, J.W. (eds.), Older Veterans:

Linking VA and Community Resources (Cambridge, MA: Harvard University Press, 1984.

902. White, M., ‘‘Case Management,’ Encyclopedia of

Aging, G.L. Maddox, R.C. Atchley, L.W. Peon, et

al. (eds.) (New York, NY: Springer Publishing Co.,

1987).

903. White, M., and Simmons, J., “Case Management in

Hospitals,” Generations 12(5):34-38, 1988.

904. Whitehouse, P., Director, Alzheimer’s Neuroscience

Center, University Hospitals of Cleveland, Cleveland, OH, personal communications, Sept. 13,

1988, and July 10,1989.

905. Wilby, L.D., Training Project Director, Rhode

Island Council of Community Mental Health Centers, Inc., Pawtucket, RI, personal communication,

Sept. 29, 1988.

906. Wilkinson, A.M., Program Coordinator, Multnomah

County Aging Services Division, Department of

Human Services, Portland, OR, August 1989.

907. Williams, M.E., “Outpatient Geriatric Evaluation,”

Clinics in Geriatric Medicine, L.Z. Rubenstein, L.J.

Campbell, and R.L. Kane (eds.) (Philadelphia, PA:

W.B. Saunders Co., 1987).

908. Williams, M.E., Director, Program on Aging, University of North Carolina, Chapel Hill, NC, personal

communication, Jan. 12, 1988.

909. Williams, M.E., and Williams T.F., “Evaluation of

Older Persons in the Ambulatory Setting,” Journal

of the American Geriatrics Society 34:37-43, 1986.

910. Williams, M.E., Williams, T.F., Zimmer, J.G., et al.,

“How Does the Team Approach to Outpatient

Geriatric Evaluation Compare With Traditional

Care: A Report of a Randomized Controlled Trial,”

Journal of the American Geriatrics Society 35(12):

10711078,1987.

911. Williams, T.F., “Integration of Geriatric Assessment Into the Community,” Clinics in Geriatric

Medicine, L.Z. Rubenstein, L.J. Campbell, and R.L.

Kane (eds.) (Philadelphia, PA: W.B. Saunders Co.,

1987).

912. Windley, P.G., “Community Services in Small

Rural Towns: Patterns of Use by Older Residents,”

Gerontologist 23(2):180-184, 1983.

913. Winograd, C.H., “Mental Status Tests and the

Capacity for Self-Care,” Journal of the American

Geriatrics Society 32(1):49-55, 1984.

914. Winograd, C.H., “Inpatient Geriatric Consultation,” Clinics in Geriatric Medicine, L.Z. Rubenstein, L.J. Campbell, and R.L. Kane (eds.) (Philadelphia, PA: W.B. Saunders Co., 1987).

915. Winograd, C.H., and Jarvik, L.F., “Physician Management of the Demented Patient,” Journal of the

American Geriatrics Society 34(4):295-308, 1986.

916. Winogrond, I.R., Fisk, A.A., Kirsling, R.A., et al.,

‘‘The Relationship of Caregiver Burden and Morale

to Alzheimer’s Disease Patient Function in a

Therapeutic Setting,” Gerontologist 27(3):336-

339, 1987.

917. Winship, D.H., Associate Deputy Chief Medical

Director, Veterans Health Services and Research

Administration, U.S. Department of Veterans Affairs, “Statement,” Health Care Services for Aging

Veterans, hearing before the Subcommittee on

Oversight and Investigations, Committee on Veterans’ Affairs, House of Representatives, U.S. Congress, Washington, DC, Apr. 13, 1989, Serial No.

101-8 (Washington, DC: U.S. Government Printing

Office, 1989).

918. Wisconsin Department of Health and Social Services, Division of Community Services, "Alzheimer’s

Initiative,” Madison, WI, June 1987.
382 ● Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

919*

920.

921.

922.

923.

924.

925.

926.

927.

928.

929.

930.

931.

Wisconsin Department of Health and Social Services, Division of Community Services, Office of

program Initiatives, ‘‘Consumer-Directed Services:

Final Report,” Madison, WI, August 1985.

Wisconsin Task Force on Alzheimer’s Disease and

Other Irreversible Dementias, “Final Report of the

Wisconsin Task Force on Alzheimer’s Disease and

Other Irreversible Dementia,” Bureau on Aging,

Division of Community Services, Madison, WI,

April 1987.

Wolf-Klein, G.P., Silverstone, F.A., Bred, M. S., et

al., “Are Alzheimer’s Patients Healthier,” Journal

of the American Geriatrics Society 36(3):219-224,

1988.

Wood, J.B., and Estes, C.L., “Effects of Health

Care Cost Containment Policies,” Generations

11(2):29-33, 1986/87.

Wood, J. B., Estes, C. L., Lee, P.R., et al., Public

Policy, the Private Nonprofit Sector and the Delivery of Community-Based Long-Term Care Services

for the Elderly (San Francisco, CA: University of

California at San Francisco, Aging Health Policy

Center, 1984).

Wood, J. B., Hughes, R. G., and Estes, C. L., “Community Health Centers and the Elderly: A Potential

New Alliance,” Journal of Community Health

11(2)137-146, 1986.

Wyszewianski, L., “Quality of Care: Past Achievements and Future Challenges,” Inquiry 25(1):13-

22, 1988.

Yankelovich, Skelly, and White/Clancy, Shulman,

Inc., “Caregivers of Patients With Dementia,”

contract report prepared for the Office of Technology Assessment, U.S. Congress, Washington, DC,

April 1986.

Yeo, G., and McGann, L., “Utilization by Family

Physicians of Support Services for Elderly Patients,” Journal of Family Practice 22(5) ;431-434,

1986.

York J.L., “Family/Staff Relationships,’ A Better

Life, D.H. Coons, L. Metzelaar, A. Robinson, et al.

(eds.) (Columbus, OH: The Source for Nursing

Home Literature, 1986).

Young, D., A Promise Kept: Boston’s Neighborhood Health Centers (Somerville, MA: Ed Hogan/

Aspect Composition, 1982).

Young, C.L., Goughler, D.H., and Larson, P.J.,

“Organizational Volunteers for the Rural Frail

Elderly: Outreach Case Finding and Service Delivery,” Gerontologist 26(4):342-344, 1988.

Zarit, S.H., Professor and Assistant Director for

Research, Gerontology Center, Department of Individual and Family Studies, College of Health and

Human Development, Pennsylvania State University, University Park, PA, personal communication,

Feb. 19, 1988.

932.

933.

934.

935.

936.

937.

938.

939.

940.

941.

942.

943.

Zarit, S.H., “Issues and Directions in Family

Intervention Research,’ ‘Alzheimer’s Disease Treatment and Family Stress: Directions for Research, E.

Light and B.D. Lebowitz (eds.) (Rockville, MD:

U.S. Department of Health and Human Services,

Public Health Service, Alcohol, Drug Abuse, and

Mental Health Administration, National Institute of

Mental Health, 1989).

Zarit, S.H., and Anthony, C.K., ‘Interventions With

Dementia Patients and Their Families,” The Dementias: Policy and Management, M.L.M.

Gilhooly, S.H. Zarit, and J.E. Birren (eds.) (Englewood Cliffs, NJ: Prentice Hall, 1986).

Zarit, S.H., MaloneBeach, E., and Spore, D.L.,

“Case Management as an Approach to Dementia:

An Exploratory Study,” contract report prepared

for the Office of Technology Assessment, U.S.

Congress, Washington, DC, July 1988.

Zarit, S.H., Orr, N.K., and Zarit, J.M., Working With

Families of Dementia Victims: A Treatment Manual, DHHS Pub. No. (OHDS) 84-20816 (Washington, DC: U.S. Department of Health and Human

Services, Office of Human Development Services,

1983).

Zarit, S.H., Orr, N. K., and Zarit, J.M., The Hidden

Victims of Alzheimer’s Disease: Families Under

Stress (New York, NY: New York University Press,

1985).

Zarit, S. H., Reever, K.E., and Bach-Peterson, J.,

“Relatives of the Impaired Elderly: Correlates of

Feelings of Burden,’ Gerontologist 20(6):649-655,

1980.

Zarit, S. H., Todd, P.A., and Zarit, J.M., “Subjective

Burdens of Husbands and Wives as Caregivers: A

Longitudinal Study,” Gerontologist 26(3):260-

266, 1986.

Zawadski, R.T., “The Long-Term Care Demonstration Projects: What Are They and Why hey Came

Into Being,” Home Health Care Services Quarterly, Special Double Issue--Community-BasedSysterns of Long-Term Care 4(3/4):5-19, 1983.

Zawadski, R.T., Consultant, Albany, CA, personal

communications, June 1, 1989, and July 28, 1989.

Zawadski, R.T., and Ansak, M.L., “Consolidating

Community-Based Long-Term Care: Early Returns

From the On Lok Demonstration,” Gerontologist

23(4):364-69, 1983.

Zawadski, R.T., and Eng, C., “Case Management in

Capitated Long-Term Care,” Health Care Financing Review, Annual Supplement, pp. 75-81, 1988.

Zawadski, R.T, and Gee, S., “A Practical Guide to

Integrated Computerized Information Management,’

Using Computers in Clinical Practice, M. Schwartz

(cd.) (New York, NY: Haworth Press, 1984).
References .383

944.

945.

Zeman, S., “The Physician’s Office: Weak Link in 946.

Referral Chain,” Aging Network News 5(1):4-5,

1988. 947.

Zuckerman, C., “Life-Sustaining Technologies and

the Elderly: The Legal Issues,” contract report 948.

prepared for the Office of Technology Assessment,

U.S. Congress, Washington, DC, June 1986.

Zuckerman, C., “An Attorney’s View,” Generations 11(4):60-61, 1987.

Zuckerrnan, C., “Conclusions and Guidelines for

Practice,” Generations 11(4):67-73, 1987.

Zuckerman, C., “Recommendations for New Policies and Procedures,” Generations 11(4):74,75,

1987.
Appendixes
Appendix A

Method of the Study

Following the release of OTA’s report, Losing a

Million Minds: Confronting the Tragedy of Alzheimer’s

Disease and Other Dementias, in April 1987, OTA

received a number of requests for a follow-on study of

methods of locating and arranging services for people

with dementia. The follow-on study was requested by the

Senate Committee on Labor and Human Resources,

Senator Charles E. Grassley, the House Committee on

Energy and Commerce, and the House Select Committee

on Aging. OTA received letters of support for the study

from the Senate Special Committee on Aging, Senator

Frank H. Murkowski, ranking minority member of the

Senate Committee on Veterans’ Affairs, the House

Committee on Veterans’ Affairs, and Congresswoman

Olympia J. Snowe. In response to these congressional

requests, OTA staff developed a proposal for the study,

and the Technology Assessment Board approved the

proposed study in June 1987.

In conducting a study, OTA generally relies on the

advice and assistance of an advisory panel. The advisory

panel suggests source materials, subject areas, and

perspectives to consider; reviews drafts prepared by staff

and contractors; helps interpret information, suggests

conclusions based on the information prepared by staff;

and offers advice in the development of policy options.

The advisory panel for this OTA study was selected in

October 1987. The 21 members of the panel were chosen

to represent the professions and types of agencies and

organizations involved in caring for people with dementia

and locating and arranging services for them. The

panelists included some individuals whose work focuses

specifically on people with dementia and some individuals whose work focuses on elderly and/or disabled people

in general and includes people with dementia in those

categories. David F. Chavkin, of the American University

Practicing Law Center, served as the panel chair. The

members of the panel are listed at the beginning of this

report. Between January and November 1988, three panel

meetings were held. The panel meetings were open to the

public, and some observers attended each meeting.

The first advisory panel meeting was held January 7,

1988. Panel members discussed the overall direction and

plan for the study and examined some of the relevant

definitional issues, particularly the definition of case

management. The panel also helped OTA staff identify

the types of agencies and providers that should be

analyzed in the report with regard to their capacity to link

people with dementia to services.

The second panel meeting was held on June 23, 1988.

At that meeting, partial drafts of several chapters of the

report were reviewed, and it was decided that a separate

chapter on making decisions about services for people

with dementia would be needed. In addition, after much

debate, the panel concluded that an effective system to

link people with dementia to services must include four

components, i.e., public education, information and

referral, case management, and outreach.

The third and final panel meeting was held on Nov. 3-4,

1988. The primary focus of that meeting was the draft of

the final report prepared by OTA staff. The panel

discussed its strengths and weaknesses and made recommendations for changes and improvements. The panel

also discussed the policy options for congressional

consideration, particularly whether a system to link

people with dementia to services should serve people with

dementia exclusively or people with other diseases and

conditions as well.

Following the third panel meeting, the report was

revised by OTA staff to reflect the comments and

suggestions of the advisory panel and then sent to about

60 outside reviewers, including individuals from Federal,

State, and local government agencies that have programs

that link people with dementia to services, private

agencies and organizations, health care and social service

professionals, service providers, Alzheimer’s advocates,

and others. The report was again revised to reflect the

comments and suggestions of these outside reviewers. It

was submitted to the Technology Assessment Board in

July, 1989.

Early in the assessment, because of the lack of available

information about several important aspects of the

process by which people with dementia are--or are

not-connected to appropriate services, OTA contracted

for four small, exploratory studies, the findings of which

are discussed in the report. The four studies are described

briefly below. Due to the small size of the samples and

other characteristics of the four studies, their findings

cannot be generalized with certainty, but they do provide

insight into the problems families and others experience

in locating and arranging services for a person with

dementia and the possible solutions for those problems.

A full report on each of the studies is available from the

National Technical Information Service, U.S. Department

of Commerce, 5285 Port Royal Rd., Springfield, VA

22161, phone (703) 487-4650. The publication number

for each of the contract reports is noted below.

1. In 1987-88, a multifaceted exploratory study was

conducted for OTA in Cuyahoga County, Ohio, to learn

about the sources of information and referrals and other

aspects of the process by which families and others locate

services for a person with dementia. The study was

directed by Sharen K. Eckert of the Cleveland Chapter of

the Alzheimer’s Association and Kathleen Smyth of

89-150 - 90 - 14 –387–
388 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

University Hospitals of Cleveland. It had five components:

●

●

●

●

●

The contractors identified all the public and private

agencies in Cuyahoga County that they thought

might provide information, referrals, or services of

any kind for people with dementia the contractors

developed and mailed a questionnaire to each of the

324 agencies they identified; 97 questionnaires were

completed and returned, and their results were

analyzed.

In-depth interviews were conducted with representatives of 24 of the 75 agencies that indicated on their

questionnaire that they provide information and

referrals for people with dementia.

OTA’s contractors analyzed information about the

people who called the telephone information and

referral helpline of the Cleveland Alzheimer’s Association Chapter between April and June 1988.

In-depth interviews were conducted with 26 caregivers who contacted the helpline in that time period

and received a referral to a specific service provider.

Information about people who called the telephone

helpline of the Benjamin Rose Institute in Cleveland

was analyzed to compare the information and

referral needs and experiences of people who called

the helpline for someone with a physical impairment

v. people who called the helpline for someone with

a mental impairment.

The findings of the study conducted for OTA in

Cuyahoga County, Ohio, are discussed primarily in

chapter 2 but also in chapters 1, 3,5, and 8. A full report

on the study, “A Case Study of Methods of Locating and

Arranging Health and Long-Term Care Services for

Persons With Dementia,” is available from the National

Technical Information Service, #PB 90-186933.

Following the completion of the study in Cuyahoga

County, OTA staff met with the contractors and several

other individuals who are familiar with the service

environment for people with dementia in the county to

discuss the study’s findings and their implications for an

effective system to link people with dementia to services.

Involved in that meeting were Sharen K. Eckert and Peg

Kuechle of the Cleveland Chapter of the Alzheimer’s

Association, David Bass and Linda Noelker of the

Benjamin Rose Institute, and Kathleen Smyth and Peter

Whitehouse of University Hospitals of Cleveland.

2. To explore the question of what is different or special

about case management for people with dementia, OTA

contracted for an exploratory study of case managers’

views regarding the unique aspects and difficulties of

working with people with dementia and their families and

family caregivers’ views regarding the process by which

case managers arrange services for their relative with

dementia. The study was conducted for OTA by Steven H.

Zarit, Eileen MaloneBeach, and Diana L. Spore of Penn

State University.

The study was carried out in 4 counties in central

Pennsylvania and involved in-depth interviews with 15

staff members from 5 area agencies on aging (AAAs) and

46 family caregivers of people with dementia. The 15

AAA staff members who were interviewed for the study

included the case management supervisor and two other

staff members selected by the supervisor at each AAA; the

staff members selected by the supervisors included eight

case managers and two case aides. The 46 family

caregivers who were interviewed included some caregivers who were identified by the AAA case managers

and some who were recruited independently. The primary

sources of the independent sample were support groups,

a day care program, and other subjects. The interviews

with the AAA staff members and the family caregivers

were based on interview schedules developed by OTA’s

contractors.

The findings of the study are discussed primarily in

chapter 3. A full report on the study, “Case Management

as an Approach to Dementia: An Exploratory Study,” is

available from the National Technical Information Service, #PB 90-123191.

3. To learn about how ethnic minority people with

dementia are linked to services and to identify any special

problems that may arise in the linking process for them,

OTA contracted for an exploratory study that was carried

out in Los Angeles and San Diego Counties, California.

The study involved interviews with the families and other

informal caregivers of black, Hispanic, Japanese, and

American Indian people with dementia and with staff

members of agencies that provide services for people in

the four groups. The study was directed by Ramon Vane

of San Diego State University, Lourdis Birba of American

Health Geriatric Systems in Los Angeles, Josephine

Yelder of Pepperdine University, Yasako SakamotoKowalchuk of Little Tokyo Service Center, Ralph Forquera

of the American Indian Health Center, Rose Cosgrove of

the Indian Health Council, Inc., Rincon Reservation, and

Denise Nelsen of San Diego State University.

In all, 88 ethnic minority caregivers were interviewed,

including 35 blacks, 25 Hispanics, 18 Japanese, and 10

American Indians. Forty-eight staff members of agencies

that provide services for the four ethnic minority groups

were interviewed. The interviews were based on interview

schedules developed by OTA’s contractors. The interview schedule for the caregivers was translated into

Spanish and Japanese, and the interviewers for the

Hispanic and Japanese caregivers were bilingual.

The findings of the study are discussed primarily in

chapters 1 and 2. A full report on the study, “Linking of

Ethnic Minority Elderly With Dementia to Long-Term
Appendix A--Method of the Study ● 389

Care Services” is available from the National Technical

Information Service, #PB 90-186446.

After OTA’s contractors compiled the results of the

interviews, the contractors and OTA staff met with some

of the interviewers and local service providers for three of

the four groups--blacks, Hispanics, and Japanese--to

discuss the study findings and their policy implications.

It was not possible to arrange a meeting with the

American Indian service providers in the time available

for the study. Participants in the meetings, held in Los

Angeles in December 1988, were: Yasako SakamotoKowalchuk and Yosh Bill Watenabe of the Little Tolgo

Service Center in Los Angeles; Margaret Endo and

Sharon Kato Palmer of Keiro Services in Los Angeles;

Josephine E. Yelder of Pepperdine University; Camella J.

Barnes of the Watts Health Foundation, Inc. in Lynwood,

California; Jean Daniels of California State University,

Northridge; Monica Hampton of People Coordinated

Services of Southern California in Los Angeles; Marguerite V. Hedge of the American Lung Association in Los

Angeles; Maria P. Cordero-Aranda of Calmecac Educational Services in Los Angeles; Lourdis Birba of American Health Geriatric Systems in Los Angeles, Maria Elena

Gomez and I. Maribel Taussig of the University of

Southern California in Los Angeles.

4. To learn about the information and referral procedures of Alzheimer’s Association chapters and the

capacity of Alzheimer’s Association chapters to function

as the basis of a national linking system for people with

dementia, OTA contracted for a survey of 10 chapters.

Nancy L. Mace conducted the survey. A questionnaire

was developed and mailed to 10 chapters. The chapters

were selected to reflect diversity in size, in services

provided, in composition of staff (i.e., urban, suburban, or

rural), and in other characteristics. The 10 chapters

surveyed by OTA’s contractor were:

. the Palm Beach County Chapter,

. the Detroit Area Chapter,

. the New York City Chapter,

. the Honolulu Chapter,

. the Albuquerque Chapter,

● the Central Virginia-Lynchburg Chapter,

. the Eastern Massachusetts Chapter,

. the Western North Carolina Chapter,

● the North Central Montana Chapter, and

● the Greater Kansas City Chapter.

OTA’s contractor interviewed each chapter’s president or

executive director by telephone to obtain answers to the

questions.

The findings of the survey are discussed primarily in

the section on Alzheimer’s Association chapters in

chapter 8. A full report on the study, “The Role of

ADRDA Chapters in Providing Information and Referral

Services for Persons With Dementia” is available from

the National Technical Information Service, #PB 90-

123209.

In addition to these four small, exploratory studies,

OTA contracted with Lisa P. Gwyther of Duke University

for an analysis of factors that interfere with the use of

services by people with dementia and their caregivers.

The contract report, “Barriers to the Appropriate Use of

Community-based Services by Families of Persons with

Dementia,” draws on the findings of several Duke

University studies of people with dementia and their

families but particularly the Duke University Respite

Care Demonstration Project conducted from 1985-1987

in four counties in North Carolina. The conclusions of the

contract report are discussed primarily in chapter 3. The

full report is available from the National Technical

Information Service, #PB 89-225205.
Appendix B

Acknowledgments

OTA is grateful for the assistance of the members of the Advisory Panel, contractors, and the many other individuals

and organizations that contributed to this assessment. In addition to the members of the Advisory Panel, OTA

acknowledges the following individuals for reviewing drafts of parts of this report.

Mary Ablan

Area Agencies on Aging of Michigan

Mary Louise Ansak

On Lok Senior Health Services

Mary Barnes

Alzheimer’s Association, Palm Beach County Chapter

Karen Boies

U.S. Department of Veterans Affairs

Greta L. Berry

Ohio Department of Aging

Louise Bristol

Veterans Administration Medical Center

Coatesville, PA

Elaine M. Brody

La Jolla, CA

Kitty Buckwalter

Cedar Rapids, IA

Dave Cavenaugh

National Association of Community Health Centers

Nancy Coleman

American Bar Association, Commission on

Legal Problems of the Elderly

Robert Cook-Deegan

National Institutes of Health

Donald L. Custis

Paralyzed Veterans of America

Judy Czarnecki

Family Service of North West Ohio

Stephen I. Deutsch

Veterans Administration Medical Center

Washington, DC

Robert Dolson

Region IV Area Agency on Aging

St. Joseph, MI

David A. Drachman

University of Massachusetts Medical Center

Sharon Eckert

Cleveland Chapter of the A1zheimer’s Association

Marian Ernr

National Institute on Aging

Robert Fink

Tri-County Community Action Agency

Berlin, NH

Jim Finley

National Council of Community Mental

Health Centers

James Firman

United Seniors Consumer Cooperative

Ann Ford

Florida Department of Health and Rehabilitative Services

John R. Fulton

U.S. Department of Veterans Affairs

Ruth Galten

National Association for Home Care

Todd Gerber

New York State Department of Health

Sandra G. Gifford

Missouri Department of Social Services

Rickey Greene

New Jersey Department of Health

John A. Gronvall

U.S. Department of Veterans Affairs

Lisa Gwyther

Duke University Center for the Study of Aging

and Human Development

Paul A.L. Haber

Veterans Administration Medical Center

Washington, DC

Joseph Handy

Crotched Mountain Foundation

Manchester, NH

Ethan A. Hitchcock

New York NY

James T. Howard

California Department of Health Services

Dorothy Howe

National Institute on Adult DayCare

Lissy F. Jarvik

University of California, Los Angeles

Diane Justice

National Association of State Units on Aging

Tim Kaiser

Monroe Community Hospital

Rochester, NY

Robert Katzman

University of California, San Diego

-390-
Appendix B--Acknowledgments ● 391

Barbara Keyes Marcia G. Ory

Wisconsin Alzheimer’s Information and Training Center National Institute on Aging

John Kurtzke

Veterans Administration Medical Center

Washington, DC

John Larkin

Edith Nourse Rogers Memorial Veterans Hospital

Bedford, MA

David Lindeman

Northern California Alzheimer’s Disease Center

Kathryn Ling

Alzheimer’s Association

John D. Linkous

National Association of Area Agencies on Aging

Nancy Mace

Baltimore, MD

Gabe J. Maletta

Veterans Administration Medical Center

Minneapolis, MN

Claire McCullough

National Institute on Aging

Troleta Moody

Veterans Administration Medical Center

Clarksburg, WV

Don Moses

U.S. Department of Veterans Affairs

Robert Newcomer

University of California, San Francisco

Lin Noyes

Family Respite Center

Fairfax, VA

Edwin M. O’Donnell

U.S. Department of Veterans Affairs

Mary Plaska

National Association of Community Health Centers

George V. Podelco

Eastern Shore Community Development Group

Onancock, VA

Dawn Rice

California Department of Aging

Larry Rickards

National Association of Area Agencies on Aging

E. Clarke Ross

National Association of State Mental

Health program Directors

Charles P. Sabatino

American Bar Association

Commission on Legal Problems of the Elderly

John Shen

On Lok Senior Health Services

Janice Smith

Wisconsin Department of Health

and Social Services

Kathleen Smyth

University Hospitals of Cleveland

Ramon Vane

San Diego State University

Peter J. Whitehouse

University Hospitals of Cleveland

Juanita Wood

University of California, San Francisco

Steven H. Zarit

Pennsylvania State University
Appendix C

Reports by State Alzheimer's Disease Task Forces

and Advisory Committees

Several States have published State task force or advisory committee reports that specifically address Alzheimer’s

disease. Those reports are listed below. The list does not include State task force or committee reports on long-term care

that may include Alzheimer-related issues.

Arizona

Arizona Advisory Committee on Alzheimer’s Disease

and Related Disorders, Final Report of the Arizona

Advisory Committee on Alzheimer’s Disease and

Related Disorders (Phoenix, AZ: Arizona Department

of Economic Security, Aging and Adult Administration, Oct. 1, 1989).

California

California Alzheimer’s Disease Task Force, The California Alzheimer’s Disease Task Forcr--Final Report

(Sacramento, CA: 1987).

California Alzheimer’s Disease Task Force, The California Alzheimer’s Disease Task Force Report on

Insurance Coverage for Respite and Related Care

(Sacramento, CA: 1987).

Connecticut

Connecticut Governor’s Task Force on Alzheimer’s

Disease, Connecticut Governor’s Task Force on Alzheimer’s Disease: Interim Report (Hartford, CT

Connecticut Department on Aging, January 1987).

Connecticut Governor’s Task Force on Alzheimer’s

Disease, Connecticut Governor’s Task Force on Alzheimer’s Disease: Final Report (Hartford, CT: Connecticut Department on Aging, January 1989).

Florida

Florida Department of Health and Rehabilitation

Services and Governor’s Alzheimer’s Disease Advisory committee, “Alzheimer’s Disease Initiative:

Comprehensive Plan,” working draft, Tallahassee,

FL, April 1989.

Georgia

Georgia Alzheimer’s Disease Study Committee, Alzheimer’s Disease Study Committee Report (Atlanta

GA: Georgia Department of Human Resources, Office

of Aging, December 1985).

Idaho

Idaho Alzheimer’s Disease and Spousal Impoverishment Task Force, “Resolution of the Task Force on

Alzheimer’s Disease and Spousal Impoverishment,”

prepared for the Idaho Office on Aging, Boise, ID, Jan.

22,1988.

Illinois

Illinois Governor’s Task Force on Alzheimer’s Disease, The Governor’s Task Force on Alzheimer’s

Disease: Report to the General Assembly, 1986-1989

(Springfield, IL: September 1989).

Indiana

Indiana Governor’s Task Force on Alzheimer’s Disease and Related Senile Dementia Alzheimer’s Disease and Related Senile Dementia Task Force: Annual

Report 1988 (Indianapolis, IN: Indiana Department of

Human Services, 1988).

Indiana Governor’s Task Force on Alzheimer’s Disease and Related Senile Dementia Alzheimer’s Disease and Related Senile Dementia Task Force: Annual

Report 1989 (Indianapolis, IN: Indiana Department of

Human Services, 1989).

Iowa

Iowa Governor’s Task Force on Alzheimer’s Disease

and Related Disorders, Iowa Governor’s Task Force

on Alzheimers’ Disease and Related Disorders: Final

Report (Des Moines, IA: Iowa Department of Elder

Affairs, November 1989).

Kansas

Kansas Alzheimer’s and Related Diseases Task Force,

Kansas Alzheimer’s and Related Diseases Task Force:

Final Report (Topeka, KS: Kansas Department on

Aging, 1986).

Kentucky

Kentucky Alzheimer’s Disease Task Force, Kentucky

Alzheimer’s Disease Task Force Final Report

(Frankfort, KY: Kentucky Cabinet for Human Resources, July 28, 1987).

Maryland

Maryland Governor’s Task Force on Alzheimer’s

Disease and Related Disorders, The Maryland Report

on Alzheimer’s Disease and Related Disorders (Baltimore, MD: June 30, 1985).

-392–
Appendix C--Reports by State Alzheimer’s Disease Task Forces and Advisory Committees ● 393

Maryland Coordinating Council on Alzheimer’s Disease and Related Disorders, Interim Report of the

Coordinating Council on Alzheimer’s Disease and

Related Disorders (Baltimore, MD: Maryland Department of Health and Mental Hygiene, December 1987).

Maryland Coordinating Council on Alzheimer’s Disease and Related Disorders, Third Report of the

Coordinating Council on Alzheimer’s Disease and

Related Disorders (Baltimore, MD: Maryland Department of Health and Mental Hygiene, December 1988).

Massachusetts

Massachusetts Governor’s Committee on Alzheimer’s

Disease, The Governor’s Committee on Alzheimer’s

Disease: Final Report (Boston, MA: 1985).

Massachusetts Committee on Alzheimer’s Disease,

Interim Report of the Special Committee Established

To Make an Investigation and Study Relative to

Alzheimer’s Disease, prepared for the Senate of the

Massachusetts Legislature, Senate Pub. No. 201791,

Boston, MA, Apr. 8, 1986.

Massachusetts Committee on Alzheimer’s Disease,

Final Report of the Special Committee Established To

Make an Investigation and Study Relative to Alzheimer’s Disease, prepared for the Senate of the

Massachusetts Legislature, Senate Pub. No. 1635,

Boston, MA, Dec. 31, 1986.

Michigan J

Michigan Task Force on Alzheimer’s Disease and

Related Conditions, Alzheimer’s Disease and Related

Conditions: Reducing Uncertainty, vol. I (Lansing,

MI: Michigan Department of Public Health, July 7,

1987).

Michigan Task Force on Alzheimer’s Disease and

Related Conditions, Alzheimer’s Disease and Related

Conditions: Reducing Uncertainty, vol. II (Technica1

Supplement) (Laming, MI: Michigan Department of

Public Health, October 1987).

Michigan Dementia Subcommittee of the Chronic

Advisory Committee, Interim Recommendations for

Michigan State Public Health Dementia Programs:

Report of the Dementia Subcommittee Chronic Advisory Committee (’Lansing, MI: Michigan Health Council, December 1989).

Minnesota

Minnesota Task Force on the Needs of Persons With

Brain Impairment, Final Report of the Minnesota Task

Force on the Needs of Persons With Brain Impairment

(St. Paul, MN: Minnesota Department of Human

Services, December 1985).

Minnesota Governor’s Task Force on Alzheimer’s

Disease, The Governor’s Task Force on Alzheimer’s

Disease (St. Paul, MN: Minnesota Department of

Human Services, 1987).

Minnesota Alzheimer’s Disease/Dementia Task Force,

Minnesota Alzheimer’s Disease/Dementia Task Force:

Final Recommendations (St. Paul, MN: Minnesota

Department of Human Services, May/June 1988).

Missouri

Missouri Alzheimer’s Disease and Related Disorders

Task Force, Missouri Alzheimer’s Disease and Related

Disorders Task Force: First Annual Report (Jefferson

City, MO: Missouri Department of Social Services,

Jan. 15, 1987).

Missouri Alzheimer’s Disease and Related Disorders

Task Force, Missouri Alzheimer’s Disease and Related

Disorders Task Force: Second Annual Report (Jefferson City, MO: Missouri Department of Social Services, Jan. 15, 1988).

Missouri Alzheimer’s Disease and Related Disorders

Task Force, Missouri Alzheimer’s Disease and Related

Disorders Task Force: Third Annual Report (Jefferson

City, MO: Missouri Department of Social Services,

Jan. 15, 1989).

Nebraska

Nebraska Task Force on Alzheimer’s Disease and

Related Disorders, Report of the Task Force on Alzheimer’s Disease and Related Disorders to the Governor and the Legislature of the State of Nebraska

(Lincoln, NE: Oct. 23, 1987).

Nebraska Task Force on Alzheimer’s Disease and

Related Disorders, “Town Hall Meetings: Executive

summary, “ Lincoln, NE, October/November 1988.

New Hampshire

New Hampshire Legislative Task Force on Spousal

Impoverishment, Impoverishment of Spouses of Persons With Alzheimer’s Disease and Related Disorders:

Report to the Speaker of the House of Representatives,

President of the Senate, and Governor of New

Hampshire (Concord, NH: Dec. 1, 1988).

New Jersey

New Jersey Alzheimer’s Disease Study Commission,

Final Report: New Jersey Alzheimer’s Disease Study

Commission (Trenton, NJ: New Jersey Department of

Health, July 1986).
394 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

New York

New York Academy of Medicine and the New York

State Health Planning Commission, Alzheimer’s Disease: Implications for Public Policy in New York State,

recommendations of the Alzheimer’s Institute, convened in West Point, NY, May 31 and June 1, 1984.

North Dakota

North Dakota Alzheimer’s and Related Dementias

State Task Force, North Dakota Alzheimer’s and Related Dementias State Task Force: Report to the

Governor (Bismark, ND: March 1990).

Ohio

Ohio Department of Aging and Alzheimer’s Disease

Advisory Committee, Alzheimer’s Disease Initiatives

Progress Report (Columbus, OH: Dec. 31, 1987).

Oklahoma

Oklahoma Task Force on Alzheimer’s Disease and

Related Disorders, Final Report: Oklahoma Task

Force on Alzheimer’s Disease and Related Disorders,

issued pursuant to the State Plan for Achieving

Excellence in Health (Oklahoma City, OK: Oklahoma

Health Planning Commission, Mar. 31, 1989).

Pennsylvania

Pennsylvania Alzheimer’s Disease Task Force, “Alzheimer’s Disease Task Force Report,” Pennsylvania

Department of Aging, January 1985 (no longer available).

Rhode Island

Rhode Island Legislative Commission on Dementias

Related to Aging, Final Report (Providence, RI: May

1, 1984).

Tennessee

Tennessee Task Force To Study Alzheimer’s Disease,

Report of the Task Force Created by HJR 585 To Study

Alzheimer’s Disease (Nashville, TN: no date).

Texas

Texas Alzheimer’s Disease Task Force, Alzheimer’s

Disease Task Force Report (Austin, TX: Texas

Long-Term Care Coordinating Council for the Elderly,

Oct. 31, 1985).

Texas Council on Alzheimer’s Disease and Related

Disorders, Texas Council on Alzheimer’s Disease and

Related Disorders--Biennial Report (Austin, TX

Texas Department of Health, September 1988).

Virginia

Virginia Commission on Alzheimer’s Disease and

Related Disorders, Report of the Commission on

Alzheimer’s Disease and Related Disorders, pursuant

to HJR 309 to the Governor and the Genenal Assembly

of Virginia (Richmond, VA: House Document No. 34,

January 1986).

Virginia Commission on Alzheimer’s Disease and

Related Disorders, Report of the Commission on

Alzheimer’s Disease and Related Disorders, pursuant

to HJR 134 to the Governor and the General Assembly

of Virginia (Richmond, VA: House Document No. 33,

January 1987).

Wisconsin

Wisconsin Task Force on Alzheimer’s Disease and

Other Irreversible Dementias, Final Report of the

Wisconsin Task Force on Alzheimer’s Disease and

Other Irreversible Dementias (Madison, WI: Bureau

on Aging, Division of Community Services, Department of Health and Social Services, April 1987).
Appendix D

Glossary of Acronyms and Terms

ADEAR

ADLs

ADRCs

ADRDA

AIDs

CASA

CCCI

CCP

CDs

CHC

CMHC

CSE

ECA

EISEP

FHHC

FSP

GEU

GRECC

HMO

HRSA

IADL

IHSS

JCAHO

LAMP

MSSP

NLN

OTA

Acronyms

—area agency on aging

—American Association of Homes for the

Aging

—American Association of Retired Persons

—Alzheimer’s Disease Education and Referral (Center)

—activities of daily living

—Alzheimer’s Disease Research Centers

—Alzheimer’s Disease and Related Disorders Association

—acquired immunodeficiency syndrome

—Community Alternative Systems Agency

program (New York State)

—Connecticut Community Care, Inc.

—Community Care Program (Illinois)

—Consumer-Directed Services Initiative

—community health center

—community mental health center

—Community Services for the Elderly (New

York State)

—Epidemiologic Catchment Area (Survey)

—Expanded h-Home Services for the Elderly (New York State)

—Foundation for Hospice and Home Care

—Family Survival Project (California)

—Geriatric Evaluation Unit

—Geriatric Research, Education, and Clinical Center

—health maintenance organization

—Health Resources and Services Administration

—instrumental activities of daily living

—In-Home Supportive Services (program)

(California)

—Joint Commission on the Accreditation of

Healthcare Organizations

—Long-Term Care Assessment and Management Program (Pennsylvania)

—Multipurpose Senior Services Program

(California)

-National League for Nursing

—Office of Technology Assessment, U.S.

Congress

PASSSPORT-l%Admission Screening System Providing

Options and Resources Today (Ohio)

PRO —peer review organization

SCAN —Senior Care Action Network (California)

SEED —Service Enriched Communities for the

Elderly and Disabled (program) (California)

S/HMO —social health maintenance organization

SSI —Supplemental Security Income

—Tax Equity and Fiscal Responsibility Act

of 1982

VA —Veterans Administration

VHS&RA —Veterans Health Services and Research

Administration

VNA —Visiting Nurse Association

Terms

Activities of daily living (ADLs): Activities related to

personal care including bathing, dressing, getting in

and out of bed or a chair, dressing, using the toilet, and

eating. Compare instrumental activities of daily living.

Acute illness: An illness characterized by a single episode

of fairly short duration, usually less than 30 days, and

from which the patient can be expected to his or her

normal or previous state of activity. Examples include

infections such as pneumonia and influenza. Compare

chronic illness.

Administration on Aging: The Federal agency within

the U.S. Department of Health and Human Services

that was established under the Older Americans Act of

1965 to administer the provisions of the act at the

Federal level.

Adult day care centers: See adult day centers.

Adult day centers: Community-based entities that provide health care, social, and other services for small

groups of functionally impaired adults in group setting

during specified hours of the week. Some adult day

centers are freestanding, and others are situated in

hospitals, nursing homes, senior centers, or other

agencies.

Aging network agencies: Agencies that are part of a

loosely related network of agencies that have developed to serve elderly people since the enactment of the

Older Americans Act in 1965. These agencies include

the 57 State units on aging, the 670 area agencies on

aging (AAAs), and thousands of other agencies that

provide services for elderly people through contracts

or other agreements with AAAs.

AIDS (acquired immunodeficiency syndrome): A disease caused by the retrovirus HTLV-III (human T-cell

lymphotropic virus, type III) and characterized by a

deficiency of the immune system.

AIDS dementia: A form of dementia that is due to brain

infection by the virus that causes AIDS. The majority

of people who have AIDS develop dementia. The

special problems people with AIDS dementia confront

in locating and arranging services are an important

topic that is beyond the scope of this OTA report.

Alzheimer’s Association: A national, privately funded,

voluntary association, founded in 1980, to: 1) support

research on Alzheimer’s disease and related disorders;

2) stimulate awareness of Alzheimer’s disease among

the public and professionals; 3) encourage the forma-

–395–
396 * Confided Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

tion of local chapters to create a nationwide family

support network 4) advocate legislation at the Federal,

State, and local levels; and 5) provide services for

patients and their caregivers. The AIzheimer’s Association is also known as the Alzheimer’s Disease and

Related Disorders Association (ADRDA).

Alzheimer’s Association chapters: Local chapters of the

Alzheimer’s Association. As of May 1990, there were

210 A.lzheimer’s Association chapters in 49 States

(every State except Alaska).

Alzheimer’s diagnostic and assessment centers: See

States’ regional Alzheimer’s diagnostic and assessment centers.

Alzheimer’s disease: A chronic, progressive disease of

unknown cause that attacks brain cells or tissues and

was first described by 1906 by German neurologist

Alois Alzheimer. Alzheimer’s disease is the most

common cause of dementia in older people, accounting

for 60 to 80 percent or more of all cases. A diagnosis

of definite Alzheimer’s disease requires histopathologic confirmation after the patient’s death. A diagnosis

of probable Alzheimer’s disease can be made with

confidence if there is a typical insidious onset of

dementia with progression and if there are no other

systemic or brain diseases-e. g., Parkinson’s disease,

multi-infarct dementia, drug intoxication, brain disease and other chronic infections of the nervous

system, subdural hematoma, Huntington’s disease,

Creutzfeldt-Jacob disease, or brain tumor-that could

account for the progressive memory and other cognitive deficits.

Alzheimer’s Disease and Related Disorders Association (ADRDA): See Alzheimer’s Association.

Alzheimer’s Disease Research Centers (ADRCs): Fifteen centers, funded by the National Institute on

Aging, that conduct biomedical and clinical research

on Alzheimer’s disease and provide educational programs for the public and information and referrals for

people who are involved in their clinical research

programs.

Appropriateness of a service: In the context of this

report, those aspects of the service that make it

consistent with the needs of a person with dementia.

Area agencies on aging (AAAs): Local public or private

nonprofit agencies designated by States to implement

certain provisions of the Older Americans Act. As of

1989, there were 670 AAAs. In general, AAAs are

mandated to plan for and ensure the availability of

services for elderly people rather than to provide the

services directly. Some AAAs provide public education, information and referral, outreach, and case

management for elderly people, including some people

with dementia.

Assessment: An evaluation of an individual that usually

includes the individual’s physical, mental, emotional,

financial, and social status. One objective of an

assessment is to identify the kinds of services the

individual needs.

Assessment instrument: A test or scale used to measure

and evaluate an individual’s status in various domains

(e.g., physical, mental, emotional, financial, and social).

Autonomy: The quality or state of being self-governing

or directing.

Behavioral problems: Behaviors of some individuals

with dementia that are troublesome to the individual’s

family, other informal caregivers, and/or paid service

providers (e.g., wandering, agitation, withdrawal, severe emotional outbursts, and disruptiveness at night).

Benefits counseling: Informing clients about sources of

services and funding for services and how and where

to apply for them.

Board and care facilities: Residential care facilities that

provide room and board and variable amounts of

protective supervision, personal care, and other services but not nursing care. Board and care facilities

include adult foster care homes that provide care for

one or two individuals as well as group homes, homes

for the aged, and large domiciliary care facilities that

may house several hundred people.

Cavitation (or per capita) payment: A method of

payment for services in which a service provider (e.g.,

a physician, hospital, or other agency or individual) is

paid a fixed amount for each person served regardless

of the actual cost of services provided for the person.

Care coordination: A term used by some people to refer

generally to the functions OTA includes in its definition of case management.

Care management: A term used by some people to refer

generally to the functions OTA includes in its definition of case management.

Caregiver: As used in this report, a relative, friend

neighbor, or other individual who provides care for a

physically or mentally impaired person on an unpaid

basis. A primary caregiver is the individual who

provides most of the person’s care; a secondary

caregiver is an individual who helps out occasionally.

The caregivers of people with dementia are usually

their adult children and spouses, most of whom are

women.

Caregiver support group: A group of peopleincluding family members, friends, and others-who

meet on a regular basis to share information, exchange

coping strategies, and give and receive mutual support

in caring for another person. Many support groups for

caregivers of people with dementia are sponsored by

Alzheimer’s Association chapters. Other support

groups for caregivers of people with dementia are

sponsored by hospitals, other public and private

agencies, and individual health care and social service

professionals and service providers.

Case management: 1) A term used in a wide range of
Appendix D--Glossary of Acronyms and Terms .397

contexts in which its general meaning is the arrangement and coordination of services provided for an

individual. The precise meaning of the term is often

unclear. 2) As defined in this report, case management

is a process that includes the following five functions:

. assessing a client’s needs,

● developing a plan of care for the client,

● arranging and coordinating services for the client,

. monitoring and evaluating the services the client

receives, and

. reassessing the client’s situation as the need

arises.

Case management—along with public education, information and referral, and outreach-is identified in

this OTA report as one of the components of an

effective system to link people with dementia to

services.

Case manager: An individual who performs the five

functions just listed. Nurses, social workers, and

individuals with a college, but not a professional

degree in a human service field frequently act as case

managers for people with dementia, but individuals

with other backgrounds and training also perform case

management functions for some people with dementia.

Chore services: Services such as heavy house cleaning,

minor household repairs, and yard work.

Chronic illness: An illness that lasts over an extended

period of time and from which a person is not expected

to recover. Examples are Alzheimer’s disease, osteoarthritis, and diabetes. Compare acute illness.

Coexisting medical conditions: As used in this report,

medical illnesses and conditions in a person with

dementia that are unrelated or only peripherally related

to the person’s dementing disease.

Cognitive deficit/impairment: The loss of or a disturbance in one or more cognitive abilities, such as

memory, intelligence, learning ability, problemsolving, judgment, comprehension, attention, and

orientation to time and place and to oneself. Impairment of these abilities is a central feature of dementia.

Community health centers (CHCs): Organizations that

provide primary health care and other health-related

services to individuals in a local community. As of

1989, there were about 1,200 CHCs providing services

at more than 2,000 sites throughout the country.

Roughly half of these CHCs were receiving Federal

grants under Section 330 of the Public Health Service

Act, which authorizes grants to public and private

nonprofit organizations that provide primary health

care to populations or areas that are ‘‘medically

underserved.

Community mental health centers (CMHCs): Local

organizations that provide mental health services for

people of all ages who have mental and emotional

problems. There is no generally accepted figure for the

number of CMHCs in the United States, in part

because of lack of agreement about which agencies

should be counted as CMHCs, but available data

indicate that there are probably at least 2,300 CMHCs

nationwide. Some CMHCs receive funding through

the Federal Alcohol, Drug Abuse, and Mental Health

Services Block Grant.

Companion services: Supervision, socialization, and

other services such as reading, letter writing, and light

errands, provided by an individual who comes to the

home, often in the absence of the primary caregiver.

Competent/competency: As used in this report, terms

that refer to the legal status of an adult who has not

been declared incompetent by a court. Under U.S.

common law, competent individuals have the right to

control their property, manage their personal affairs,

and give or withhold consent for medical treatment.

Congregate meals: Meals provided to a group of older

adults in a community setting, such as a senior center

or school.

Consolidated service system: See service system.

Counseling: Assistance and guidance provided by social

workers, psychologists, nurses, and others to help

define and resolve problems of various kinds, including, in the context of this OTA report, emotional and

relationship problems related to the care of a person

with dementia.

Decisionally capable/incapable: As used in this report,

terms that refer to a person’s ability/lack of ability to

make decisions in a general sense rather than a legal

one. If a person with dementia is decisionally incapable, decisions about services must be made for him or

her. Compare competent and incompetent.

Decisionmaking capacity: As used in this report, a term

that refers to the ability of a person to make decisions

for himself or herself. Three types of criteria are

generally used to judge an individual’s decisionmaking capacity: status criteria (e.g., consciousness or

age), outcome criteria (e.g., a judgment about the

“reasonableness” of a person’s decision), and functional criteria (e.g., evidencing an understanding of

relevant information and issues).

Decision-specific decisionmaking capacity: An individual’s capacity to make a specific decision. A

concept that has emerged in the legal and ethical debate

about determining individuals’ decisionmaking capacity is that an individual’s capacity to make a decision

may differ for each decision, depending on the

characteristics of the decision and the circumstances in

which it must be made.

Dementia: A clinical syndrome characterized by a

decline in mental function of long duration (months to

years) in an alert individual. Symptoms of dementia

include memory loss and the loss or diminution of

other cognitive abilities, such as learning ability,

judgment, comprehension, attention, and orientation

to time and place and to oneself. Self-care and
398 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

language abilities are usually also affected. Dementia

can be caused by over 70 diseases and conditions, but

the leading cause in older people is Alzheimer’s

disease.

Dementia-capable: As used in this report to characterize

a system for linking people with dementia to services,

a term that means being skilled in working with people

with dementia and their caregivers, knowledgeable

about the kinds of services that may help them, and

aware of which agencies and individuals provide such

services in a community.

Dementia-friendly: As used in this report to characterize

a system for linking people with dementia to services,

a term that means being responsive to people with

dementia and their caregivers.

Dementia-specific: As used in this report to characterize

a system for linking people with dementia to services,

a term that means serving people with dementia

exclusively.

Dementing illness, disease, or condition: One of the

more than 70 illnesses, diseases, and conditions that

can cause dementia. Dementing illnesses, diseases,

and conditions are divisible into two groups: those in

which the illness, disease, or condition inevitably

produces dementia if it progresses through its full

course, such as Alzheimer’s disease, and those that

may or may not produce dementia, such as certain

infectious, metabolic, and nutritional disorders.

Domiciliary care facility: A nonmedical residential care

facility that provides room and board and variable

amounts of protective supervision, personal care, and

other services. The term is used for the 29 large

residential care facilities currently operated by the VA.

Durable power of attorney: A modification of the

standard power of attorney that permits an individual

(the principal) to transfer specified powers to another

person. The power may be broad in scope or limited.

The fundamental difference between standard and

durable power of attorney is that the former loses its

validity when the principal becomes incompetent and

is therefore not useful for people with a dementing

illness. A durable power of attorney provides a means

of designating a surrogate decisionmaker that survives

the incompetence of the principal.

Elderly: Generally referring to individuals over age 65.

Escort service: A service in which someone accompanies

an individual to a medical appointment, another

appointment, or an errand to provide assistance and

supervision.

Ethics committee: A multidisciplinary group established

in a hospital or nursing home to address ethical

dilemmas that arise within the facility and advise the

staff, patients (or residents), and their caregivers about

difficult treatment decisions.

Ethnic minority group: A subgroup of the population

that is characterized by a common language, culture,

and historical background. According to this definition, everyone belongs to an ethnic minority group. In

general, this report uses the term to refer to subgroups

of four large minority groups (i.e., blacks, Hispanics,

Asian Americans, and Native Americans.

Family caregiver: See caregiver.

Family consent laws: State statutes that authorize family

members to make specified types of decisions (e.g.,

about life-sustaining medical treatments) for relatives

who are decisionally incapable. Such statutes exist in

a only a few States.

Family support group: See caregiver support group.

Family Survival Project (FSP): An organization in San

Francisco that provides public education, information

and referral, care coordination, and a variety of other

services for brain-impaired adults and their caregivers.

Under contract with the State of California. FSP serves

as: 1) as the Bay Area Regional Resource Center for a

six-county area; and 2) as California’s Statewide

Resource Consultant, which helps coordinate California’s network of 11 regional resource centers for the

caregivers of brain-impaired adults. The majority of

FSP’s clients have dementia.

Fee-for-service payment: A method of paying for

services in which each service performed by an

individual provider bears a related charge. This charge

is paid by the individual patient receiving the service

or by an insurer on behalf of the patient.

Financial/benefits counseling: See benefits counseling.

Functional impairment: A deficit in an individual’s

ability to function independently. Functional impairments in elderly people are often described in terms of

deficits in activities of daily living (ADLs) a n d

instrumental activities of daily living (IADLs).

Gatekeeper: As used in this report, a term that refers to

an individual, such as a mail carrier or utility meter

reader, who interacts with many people in the course

of his or her regular activities and has been specially

trained to identify isolated elderly people who maybe

in need of assistance. (Note: To avoid confusion, this

report does not use the term gatekeeper in another

sense in which it is often used-namely to refer to an

individual who allocates and controls the use of

resources for an agency that provides health care,

long-term care, social, or other services.)

Gatekeeper program: A type of outreach program used

to identify isolated elderly people who maybe in need

of assistance. A gatekeeper program recruits and trains

individuals who interact with many people in the

course of their regular activities+. g., mail carriers,

utility meter readers—to identify isolated elderly

people who may be in need of assistance and notify a

central agency. The central agency then contacts the

people, evaluates their needs, and refers them to

services. Gatekeeper programs frequently identify

isolated people with dementia who need assistance but
Appendix D--Glossary of Acronyms and Terms ● 399

would not contact a health care, long-term care, or

social service agency for themselves.

Geriatric Research, Education, and Clinical Centers

(GRECCs): Centers established at VA medical centers

to provide basic and clinical research and education

and training for clinicians and researchers in the field

of geriatrics. As of 1990, there were 12 GRECCs, at

least 4 of which were caring for some veterans with

dementia.

Guardian: A person lawfully invested with the power

and charged with the duty of protecting and taking care

of the property and/or person of an individual who has

been judged legally incompetent. In some States, the

term used instead of, or in addition to, guardian is

conservator.

Guardianship: A legal mechanism that involves the

appointment by a court of an individual or institution

(the guardian) to protect and take care of the person

and/or property of a person who is found incapable of

managing his or her own affairs (the ward). In some

States, the term used instead of, or in addition to,

guardianship is conservatorship.

Health care and social service professionals: Physicians, nurses, social workers, psychologists, physical

therapists, speech therapists, occupational therapists,

and other professionals who provide health care,

health-related, and social services.

Health maintenance organization (HMO): An organization that provides directly or arranges for the

provision of specified health care services to a

voluntarily enrolled population for a fixed per capita

payment rather than a fee for each services. Typically,

a physician, a nurse, or another individual is in charge

of each enrollee’s care and is responsible for authorizing and arranging any special services for the person.

Home care agency: See home health agency. Both terms

are used synonymously in this report.

Home care services: Health care, long-term care, social,

and other services provided in the home by a home

health agency or other organization or individual.

Home care services range from nonmedical services

(e.g., paid companion and housekeeping services) to

health care and health-related services (e.g., skilled

nursing and physical therapy).

Home-delivered meals: Meals prepared at a central

location and delivered to homebound people on a daily

or less frequent basis.

Home health agency: A local organization that provides

in-home services. As used in this report, the term

includes agencies that provide skilled nursing care,

physical therapy, and other health care and healthrelated services, as well as homemaker and other

agencies that provide social and other nonmedical

in-home services. In 1989, there were about 12,800

home health agencies in the United States, including

about 5,700 agencies that were certified to provide

Medicare-covered home health care and about 7,100

other agencies that provided in-home services but were

not Medicare-certified. To be certified by Medicare, a

home health agency must provide skilled nursing care

and meet certain other requirements.

Home health aide: A person who is paid to provide

health-related services in the home. The services

provided by a home health aide may include assistance

with medications and exercise, assistance with personal care (e.g., bathing, dressing, and feeding), and

light household tasks. The term is sometimes used

synonymously with the term homemaker, but some

agencies and others make a distinction between the two

terms.

Home health care agency: See home health agency.

Homemaker: A person who is paid to provide in-home

services, such as assistance with personal care (e.g.,

bathing, dressing, and feeding), household tasks, meal

preparation, and shopping. The term is sometimes used

synonymously with the term home health aide, but

some agencies and others make a distinction between

the two terms.

Hospice services: Medical, nursing, counseling, and

other supportive services rendered to terminally ill

people and their families. Hospice care is intended to

be palliative and to improve quality of life rather than

to cure disease or extend life.

Hospital-based geriatric assessment programs: Special hospital inpatient or outpatient programs that use

a multidisciplinary team to evaluate elderly patients

with complicated medical or psychiatric problems and

to develop a coordinated plan of care. Some hospitalbased geriatric assessment programs also offer other

services such as medical and psychiatric treatment, and

rehabilitative services. Hospital-based geriatric assessment programs include inpatient geriatric specialty

units, inpatient geriatric consultation services, outpatient geriatric services, and inpatient and outpatient

geropsychiatry services. As of 1987, about 1,400

hospitals nationwide had a geriatric assessment program.

Hospital discharge planner: A person who arranges

post-discharge care for hospitalized patients.

Huntington’s disease: A genetic disease characterized

by chronic progressive disorders of movement and

mental deterioration culminating in dementia. Symptoms do not usually appear until late middle age, and

death usually results within 15 years.

Incompetent: As used in this report, a term that refers to

the legal status of a person who, on the basis of

evidence presented to a court, has been declared

incapable of managing his or her affairs. Compare

decisionally capable/incapable.

Informal caregivers: See caregivers.

Informal services: As used in this report, unpaid services

provided for an impaired person by his or her relatives,
400 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

friends, neighbors, or others.

Information and referral: As defined in this report,

information and referral means providing information

about and referrals to specific services and sources of

funding for services in a community. Information and

referral-along with public education, outreach, and

case management—is identified in this OTA report as

one of the essential components of an effective system

to link people with dementia to services.

In-home services: Health care, long-term care, social,

and other services provided in the home by a home

health agency or other organization or individual. In

this report, the term is used synonymously with the

term home care services.

Instrumental activities of daily living (IADLs): Activities related to independent living, such as preparing

meals, doing laundry, managing money, shopping for

groceries, cleaning the house, cooking, using a telephone, and taking medications. Compare activities of

daily living.

LAMP (Long-Term Care Assessment and Management Program): A program in Pennsylvania that

contracts with local agencies (usually area agencies on

aging) to provide case management for elderly people

who are eligible for Medicaid-funded nursing home

care but choose to remain at home. It is similar to

Ohio’s PASSPORT program but is paid for solely with

State funds.

Legal services: Assistance with legal matters, such as

property disposition, transfer of assets, wills, living

wills, powers of attorney, and guardianship.

Life-sustaining medical treatments: Drugs, medical

devices, or procedures that can keep a person alive who

would otherwise die within a foreseeable, though

usually uncertain, time. Examples include cardiopulmonary resuscitation, mechanical ventilation, renal

dialysis, and nutritional support (i.e., tube or intravenous feeding).

Linking program: As used in this report, a program that

provides one or more of the functions identified by

OTA as essential components of an effective system to

link people with dementia to services (i.e., public

education, information and referral, outreach, and case

management).

Living will: A legal mechanism, recognized in some

States, that permits a competent individual to declare

his or her wishes, especially the intent to refuse

life-sustaining procedures once he or she is incompetent and death is imminent. Along with durable powers

of attorney, living wills are legal mechanisms that give

individuals the ability to direct treatment decisions

after incompetence.

Long-distance caregiver: An adult child or other relative

or friend of an impaired person who lives in a different

locality or area of the country but still tries to function

as a caregiver for the person-often by trying to locate,

arrange, and monitor services for the person. The

difficulties long-distance caregivers face in locating

and arranging appropriate services for a relative or

friend with dementia are one of the primary reasons

that a system to link people with dementia to services

must be uniform in some way nationally.

Long-term care services: A variety of services that may

be provided in a person’s home, the community, or a

residential or institutional setting, with the objective of

maintaining and supporting a chronically ill or severely disabled individual. The services generally are

needed for a prolonged period, even if intermittently.

Medicaid: A joint Federal/State program intended to

provide health care and health-related services for

low-income individuals. Medicaid regulations are

established by each State within Federal guidelines,

and the eligibility requirements and services covered

vary significantly among the States. In general, Medicaid pays for medical, nursing home, and home health

care for individuals who meet the eligibility requirements for those services. In some States, Medicaid also

pays for adult day care and in-home services such as

personal care and homemaker services. Financial

eligibility for Medicaid is determined by a means test,

in which a ceiling is placed on the maximum income

and assets an individual may have in order to qualify

for assistance. The income and assets levels are low in

all States and very low in some States.

Medicaid 2176 Home and Community-Based waiver:

A waiver obtained under the Medicaid 2176 Home and

Community-Based Waiver program which allows

States to provide a coordinated package of home and

community-based services for individuals who otherwise would be at risk of nursing home placement or

who are already in an institution. A State with a

Medicaid 2176 waiver may use Medicaid funds to pay

for services that are not ordinarily covered by Medicaid; may pay for services for some Medicaid beneficiaries and not others, so that benefits can be targeted;

and may use a higher income standard to determine

eligibility for the waiver program than the standard

used for other Medicaid services. Although States’

Medicaid 2176 waiver programs are a valuable resource in linking some people with dementia to

services, many people with dementia are not eligible

for the programs because they do not have medical

conditions, functional impairments, or financial resources that meet the eligibility requirements for

Medicaid-funded nursing home care.

“Medically needy” people: Under Medicaid, people

whose incomes are above the ceiling established by a

State for Medicaid eligibility but who qualify for

Medicaid, nevertheless, because their medical expenses reduce their incomes below the Medicaid

eligibility level. Not all States allow Medicaid eligibility for “medically needy” people.
Appendix D--Glossary of Acronyms and Terms .401

Medicare: A nationwide health insurance program authorized in 1965 to pay for hospitalization: medical

care, and some related services for people over age 65,

people who have received Social Security disability

insurance payments for 2 years or longer, and people

with end-stage renal disease. Medicare consists of two

programs: hospital insurance (part A) and supplementary medical insurance (Part B).

Medicare Alzheimer’s Disease Demonstration: A demonstration program, mandated by Congress in 1986, to

determine the effectiveness, cost, and impact of

providing comprehensive services for Medicare enrollees who have Alzheimer’s disease or a related

disorder. As of 1990, the demonstration is being

implemented at eight sites nationally.

Minority group: See ethnic minority group.

Multidimensional assessment: A client evaluation that

focuses on many different aspects of the client’s status,

e.g., physical, mental, emotional, functional, financial,

and social.

Multidisciplinary assessment: A client evaluation conducted by individuals from various disciplines, usually

including a physician, a nurse, and a social worker and,

depending on the care setting, a physical therapist, a

speech therapist, an occupational therapist, a psychologist, and various physician specialists.

Multidisciplinary team: A team composed of individuals from various disciplines that provides comprehensive client assessments, care planning, and/or treatment. Multidisciplinary teams usually include a physician, a nurse, and a social worker and, depending on

the care setting, may also include a physical therapist,

a speech therapist, an occupational therapist, a psychologist, and various physician specialists.

Multi-infarct dementia: An irreversible form of dementia resulting from many small strokes. This is the

second most common cause of dementia in the elderly.

Nursing homes: Residential care facilities that provide

24-hour supervision, nursing care, personal care, and

other services. An estimated 40 to 70 percent of

nursing home residents have dementia and many

people with dementia spend some time in a nursing

home in the course of their illness. Medicaid pays for

a significant proportion of nursing home care, but

nationally half the cost of nursing home care is borne

by residents and their families.

Nursing home preadmission screening programs:

Programs to evaluate nursing home applicants and

divert those who can be cared for at home. As of 1986,

29 States and the District of Columbia has nursing

home preadmission screening programs. In 1987, a

Federal law as enacted that requires States to establish

a nursing home preadmission screening program to

identify mentally ill and mentally retarded people for

whom nursing home placement is inappropriate.

Occupational therapy: Therapy provided to people who

are physically or mentally impaired that is intended to

improve functional abilities; provided by an occupational therapist.

Older Americans Act: A law enacted in 1965 that

established the Federal Administration on Aging and

a program of Federal grants to States for the development of a coordinated system of services for elderly

people in their homes and communities. The act also

required States to designate a single State agency—

commonly referred to as a State unit on aging-to

formulate a plan for developing the system of services

envisioned in the act. The 1973 amendments to the act

required each State to divide its jurisdiction into

planning and service areas and to designate an area

agency on aging to plan, coordinate, and arrange

services for elderly people in each area.

On Lok Senior Health Services: An organization that

plans, coordinates, and provides comprehensive health

care, long-term care, social, and other services for

about 300 very frail and severely impaired older adults

in the Chinatown-North Beach area of San Francisco.

On Lok’s comprehensive, consolidated service program exemplifies a model of service delivery that

eliminates for its clients the problems in locating and

arranging services that are, the focus of this OTA

report.

Outcome criteria to measures quality of care: Criteria

for measuring quality that focus on the outcome of care

(e.g., the patient’s health and functional abilities and

patient and family satisfaction). The use of outcome

criteria to measure quality assumes a direct link

between the process of care and the outcomes of care.

In the case of people with dementia, however, that link

is seldom straightforward or clear since many factors

other then quality of care influence patient outcomes.

Compare process criteria and structural criteria to

measure quality of care.

Outreach: As defined in this report, outreach means

using an active method to identify individuals with

dementia and caregivers who need assistance but are

unlikely to respond to public education programs or to

contact an information and referral source on their

own. Outreach is likely to be needed for isolated

people with dementia who live alone and have no

relative or friend to help them and for people with

dementia whose caregiver is isolated and overburdened. Outreach-along with public education, information and referral, and case management-is identified in this OTA report as one of the essential

components of an effective system to link people with

dementia to services.

Parkinson’s disease: A disease affecting movement and

leading to dementia in approximately one-third of

those affected. The disease is associated with destruction of cells in the brain-stem. The symptoms of

Parkinson’s disease include tremors, rigidity, extreme
402 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

slowness of movement, and a mask-like facial expression.

PASSPORT (Pre-Admission Screening System Providing Options and Resources Today): A Medicaid

2176 waiver program in Ohio that provides case

management and a range of in-home and community

services for people who are eligible for Medicaidcovered nursing home care but choose to remain at

home, including some people with dementia.

People with dementia: As used in this report, the term

refers to people with Alzheimer’s disease, and other

dementing diseases that primarily affect elderly people.

Personal care services: Assistance with self-care activities, including eating, dressing, bathing, getting in and

out of bed, and using the toilet.

Personal emergency response system: A telephonebased system to alert others that an individual who is

alone is experiencing an emergency and needs assistance.

Physical therapy: Rehabilitative therapy provided by a

physical therapist. The therapy may include a variety

of methods, such as heat, hydrotherapy, massage,

exercise, and the use of mechanical devices.

Preadmission screening: See nursing home preadmission screening programs.

Prevalence: The total number of individuals in a given

population who have a specific disorder at one period

in time.

Primary caregiver: See caregiver.

Private geriatric case manager: Individual professionals (usually social workers or nurses) and others

who provide client assessment, care planning, service

arrangement and coordination, monitoring, and a

variety of services for elderly people on a fee-forservice basis. Although no data are available, anecdotal evidence suggests that many clients of private

geriatric case managers have dementia.

Process criteria to measure quality of care: Criteria for

measuring quality that focus on the activities involved

in providing care (e.g., care planning and medication

procedures and procedures for handling difficult

patient behaviors). The use of process criteria to

measure quality is valid only if the processes have been

linked to desired or undesired outcomes of care.

Compare outcome criteria and structural criteria to

measure quality.

Prospective payment: Payment for medical care on the

basis of rates set in advance of the time period in which

they apply. Medicare’s DRG payment system for

inpatient hospital services is a particular form of

prospective payment.

Protective services: Social and law enforcement services

to prevent, eliminate, or remedy the effects of physical

and emotional abuse or neglect.

Public education: As defined in this report, public

education means providing programs and materials to

help people understand dementia and the kinds of

services that may be helpful for individuals with

dementia. Public education-along with information

and referral, outreach, and case management-is

identified in this OTA report as one of the essential

components of an effective system to link people with

dementia to services.

Quality assessment: The measurement and evaluation of

quality of care.

Quality assurance: Procedures and activities to safeguard or improve quality by assessing quality and

taking action to correct any problems found.

Quality of care: The extent to which the service increases

the probability of desired outcomes and reduces the

probability of undesired outcomes, given the constraints of existing knowledge.

Regional Alzheimer’s diagnostic and assessment centers: See States’ regional Alzheimer’s diagnostic and

assessment centers.

Regional resource centers: California’s 11 regional

centers that provide public education, information and

referral, and care coordination, and a variety of other

services for brain-impaired adults and their caregivers.

The majority of the clients of California’s regional

resource centers are caregivers of people with dementia. One of the centers is the Family Survival Project,

which is the model for the other 10 centers.

Residential care facility: A care setting in which the

patient or client resides, such as a nursing home, board

and care facility, or State mental hospitals.

Respite care services: Any short-term services that are

intended to provide temporary relief for the primary

caregiver of an impaired person. Such services may

include in-home companion/sitter services, in-home

personal care, adult day care, or short-term (e.g.,

overnight) stays in a nursing home.

Senior center: A community facility for elderly people.

Senior centers provide various activities for elderly

people, recreational, educational, cultural, or social

events. Some centers provide adult day care, congregate meals, health screening, and limited health care

services.

Service consciousness: As used in this report, a general

awareness that services exist. Service consciousness is

one of two components of patients’ and caregivers’

knowledge about services. Compare service knowledge.

Service knowledge: Knowledge about a specific service,

including who provides it in a community. Service

knowledge is one of two components of patients’ and

caregivers’ knowledge about services. Compare service consciousness.

Services for people with dementia: In the context of this

report, services for people with dementia means all

health care, long-term care, social, and other services
Appendix D--Glossary of Acronyms and Terms ● 403

that may be needed by a person with dementia. Such

services include diagnosis, acute medical care, adult

day care, chore services, escort service, financial/

benefits counseling, home-delivered meals, hospice,

legal services, mental health services, multidimensional assessment; occupational therapy; personal

care, homemaker services, physical therapy, recreation/

exercise, respite care, skilled nursing, speech therapy,

vision care, and other services. In this report, the term

‘‘services’ is not used for the four linking functions—

public education, information and referral, outreach,

and case management.

Service system: As used in this report, an organizational

entity that pools funds from several sources and

integrates the functions of various agencies that

provide services in a given geographic area. These

entities are intended to create a consolidated system

through which people are connected to services.

Service-connected disabilities: With respect to the

eligibility criteria for VA services, disabilities that

were incurred or aggravated during military service.

Veterans with a service-connected disability have

priority for VA services.

Severely mentally ill: A term that usually refers to adults

with a diagnosis of schizophrenia, a major affective

disorder, psychosis, or a personality disorder and a

recent history of psychiatric care that required more

than voluntary outpatient treatment. The term is not

usually used to refer to people with Alzheimer’s

disease or other diseases that cause dementia.

Social health maintenance organization (S/HMO): An

innovative organizational entity that offers voluntarily

enrolled elderly Medicare beneficiaries a package of

acute and long-term care services and operates on a

capitated, prospectively fixed budget. As of 1990,

there were four S/HMOs in this country, all of which

were part of a congressionally mandated demonstration project-the National S/HMO Demonstration.

Social Services Block Grant: A Federal block grant to

States for social services for elderly and disabled

people and others. There are no Federal requirements

for specific services that must be provided, but many

States use a portion of their Social Services Block

Grant funds for board and care, adult day care, home

health aide, homemaker, and chore services. States

determine the eligibility requirements for these services and may use a means test.

Special care units: Units in nursing homes and board and

care facilities that provide “special care” for people

with dementia.

Speech therapy: Treatment to improve or restore speech;

provided by a speech therapist.

State unit on aging: A State agency designated under the

provisions of the Older Americans Act to formulate a

plan for developing the system of community services

envisioned by the act and to oversee the use of Older

Americans Act funds in the State. Currently, there is a

State unit on aging in each of the 50 States, the District

of Columbia, and 7 territories.

States’ regional Alzheimer's diagnostic and assessment centers: A general name used in this report to

refer to regional centers established by States to

provide diagnosis, a comprehensive assessment, and a

plan of care for people suspected of having Alzheimer’s disease or a related disorder. Some States’

regional Alzheimer’s diagnostic and assessment centers also provide services, such as medical treatment,

psychiatric treatment, adult day care, caregiver education and training, and caregiver support groups, and

most centers assist in locating and arranging services

for their clients. Many of the centers also conduct

biomedical and clinical research. States with such

centers include California Connecticut, Florida, Illinois, Kentucky, Maryland, New Jersey, New York

Ohio, and Pennsylvania.

Structural criteria to measure quality: Criteria for

measuring quality that focus on the resources available

for care (e.g., the number and qualifications of staff,

and an agency’s physical plant, and financial resources). The use of structural criteria to measure

quality is valid only if the specific structural characteristics measured are associated with better processes or

outcomes of care. Compare outcome criteria and

process criteria to measure quality.

Supervision: Monitoring of an individual’s status and

activities to ensure his or her safety.

Supplemental Security Income (SSI): A Federal income

support program that provides a monthly payment for

disabled, aged, and blind people with incomes below

a specified level.

Support group: See caregiver support group.

Surrogate decision: A decision made on behalf of

another person, in particular a person who is decisionally incapable. Court rulings and legal analysis of

decisions about the use of life-sustaining technologies

have identified two standards to guide surrogate

decisionmaking: l)the “best interest standard” (which

requires the surrogate to make decisions from the

perspective of hypothetical reasonable person, using

objective, societally shared criteria); and 2) the ‘substituted judgment standard” (which requires the surrogate to make decisions from the perspective of the

patient, using the patient’s personal values and preferences).

Surrogate decisionmaker: A person who makes decisions about the health care, lifestyle, and estate of

another individual who is incapable of making the

decisions for himself or herself. A surrogate decisionmaker can be a court-appointed conservator or guardian, or a family member who makes decisions for an

impaired relative without being formally or legally

charged to do SO.
404 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Temporary treatment guardian: Volunteers used at the

University of New Mexico’s Institute of Public Law to

ascertain the wishes and preferences of hospitalized

elderly people who were too cognitively impaired to

make decisions about their own care and had no

relative or friend to make decisions for them.

Third-party payment: Payment by a private insurer or

government program to a service provider for care

given to a patient.

Validity: As used in this report, the extent to which the

criteria used to measure the quality of services actually

measure quality

Values history document: A document that expresses a

person’s wishes, values, and preferences with respect

to his or her care. Such documents have been

developed and tested at the University of New

Mexico’s Institute of Public Law.

Visiting nurse: A registered nurse who provides nursing

care for an individual at home.
Index
Index

Accreditation, see Licenses and permits

Acquired immunodeficiency syndrome, 12

Activities of daily living, see Self-care abilities

Acute care, 203,220

see also Emergency services

Administration on Aging, 47, 146,267,270,285,336

Administrative factors, 49,58, 62

bureaucracy, 128

case management, 121-122, 178,235, 236,255-256

community-level, 45, 250, 251-253, 257

consolidation of services, 45-46,227,245-254,256-257

consortia, 47, 179, 251,252, 261,284

State action, 45,46,235,236,244,245-251, 253-257

turf guarding, 4,24-25,36,4142,46,48, 62,88-89,247,

249,252,253,256,285

see also Regulations

Adult children, 9-10, 18, 19

Adult day care, 3,22,48,252,265,339-344

evaluation, 172-174

outreach, 3, 344

public education, 344

State linkage, 228,240,244,250

use, 108, 109, 110, 135

veterans, 204, 209, 220

Advocacy, 122, 178,218,228,235,248, 291-292,299,300

Agency issues

adult day centers, 48, 108, 109, 110,135, 172-174,204,

205,228,240,244,252, 265,343-344

Alzheimer’s Association Chapters, 34,41,48,93, 170-174,

187,229,272,289-299

community health centers, 22,48, 283-289

community mental health centers, 15, 22,48, 243, 274,

276-283

community support services, 48, 190-191, 194, 196,240,

241,299-304,336-339

competency policies, 140, 147, 148, 155

environment, 22-26

evaluation procedures, 190-197

funding/services allocation, 25-26,65, 118, 122, 134,235,

255-256,274,276,282, 288,297,303,310,317, 327,

335,338-339,344

home health agencies, 9-10,22,46,48,238,244, 252,

318-329

hospital geriatric programs, 48, 182,311-318

linkage v. services, 64-65

national system, categories, 48-49, 229-237,261-344

networking, 179, 263

regional centers, 48, 303, 304-311

social health maintenance organizations, 48, 329-336

State-level, 25,4346,63-64,227-257

turf guarding, 4,24-25,36,41-42,46, 48,62,88-89,247,

249,252,253,256,285

types, 22-23,3549,88-89,261-344

see also Administrative factors; Area agencies on aging;

Organizational factors; Regulations

AIDS, 12

Alaska, 230

Alcohol abuse, 12,20

Alcohol, Drug Abuse, and Mental Health Administration, 276,

277

Alzheimer’s Association, 243,289-299

case management, 204,209,220

case studies, 204,209,220

information and referral, 34,41,93, 171,289-290,293-296,

298

minority groups, 293,298

national system, 34,41,48,93, 170-174, 187,297-299

outreach, 34, 297

public education, 41,229,272,289,290,297, 298

telephone services, 41,93,290,293-296

Alzheimer’s Disease Education and Referral Center, 42

Alzheimer’s Disease Research Centers, 42

American Association of Homes for the Aging, 186,263,269

American Association of Retired Persons, 183

American Indians, 50,94$151

American Nurses’ Association, 59, 176

Area agencies on aging, 22,229,230,235,236,241, 243,248,

251,263-275,282,285-286, 342

case management, 108, 123-129, 146, 219,236, 240, 270-

271,272-273,282

case studies, 9, 123-129, 146,219,220, 269,272-273,342

eligibility, 265,266,272-273

geographic factors, 266-267

home services, 240,249,265,267

information and referral, 9,37,39,44,84,218,219,

267-270,272,275

national system, 263,274-275

outreach, 44, 108, 235, 265,272-274,275

public education, 267,269,271-272,275

Assessment, see Diagnosis and assessment; Evaluation;

Quality control

Associations, see Alzheimer’s Association; Professional and

provider associations; Voluntary agencies and

associations

Attitudes

caregivers, 20-21, 27, 35,51,74-75, 110, 111, 113-120,

126, 127-129, 130, 135, 196,201-202,253,276, 279,

283

case managers, 123-125, 126

costs and, 27, 35, 111, 113,253

dementia friendly services, 33,93,228,257,298,344

families, 9-10,20-21,35,74-75, 101, 107, 111, 113-119,

124, 125-126, 128, 132, 135, 160-161, 189,221,233-

234,276

home services, 117-118, 123, 129, 130

minorities, 51, 95

organizational, 33, 93, 178; see also Turf guarding

patients, 51, 111-113, 119-120, 135, 166, 188-189, 192,

193, 195,279

public, 41

Australia 177

Behavioral problems, see Psychiatric and behavioral problems

Beliefs, see Attitudes

Bionic Health Care Inc, v. State of Oregon Department of

Human Resources et al., 177

Black Americans, 75, 150-151,287

407–
408 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Block grants, 236,240,243,249,276-277, 321-322,342

Building Affordable Long-Term Care Alternatives: Integrating

State Policy, 245

California, 48,51,60,73,94-100, 108, 116, 150, 151,

190-191, 192,229,232,237,240-244, 279,305,306,

308,310,313,329,336-339

Family Survival Project, 194, 196,240,241,299-304

On Lok Senior Health Services, 48, 190-191,336-339

Caregivers

attitudes, 20-21, 27, 35, 51, 74-75, 110, 111, 113-120, 126,

127-129, 130, 135, 196,201-202,253,276, 279,283

education, 228, 238, 240,252, 253, 254, 276,280, 300-301,

303, 306, 324; see also Professional education; Public

education

family and other informal, 3,4, 18-22,26-28,33, 113-119,

120, 131, 171,205,207,215,228, 230,276,279,283,

300-301

information and referral, 6,26-27,73,74-80, 168-170, 183,

185-186, 197,205

knowledge about services, 26-27,34-35,76-90, 101-102,

103, 112

minorities, characteristics, 19-20, 51, 75, 96-97, 151-152

stress on, 20-21, 161, 324

support groups, 171,205, 207,215,228, 230,232,238,

252,287,300

see also Physicians

Case management, 28,29,31-32,59,62,65, 107-108,240

administrative tasks, 121-122, 178,235, 236, 255-256

adult day care centers, 135,252,343-344

Alzheimer’s Association, 296-297,298

area agencies on aging, 108, 123-129, 146, 219,236,240,

270-271,272-273,282

attitudes, 123-125, 126

case studies, 122, 123-127, 134-135, 196-197

community agencies, 235,238, 240, 247, 252-253,280,

281-282,283,285,286, 302,336,338,339

cost, 273

defined, 107,108, 120,121-123, 132-133, 134,135,227,

232,253,262

demonstration projects, 65, 133,252,255-256

education for managers, 121, 128, 145-146, 148

education v., 74

family role, 8-10, 107, 108, 123-129, 131, 132-134, 154,

155, 194-196,273,286,327

home services, 41, 191,238,252,325-326, 327,333,335

hospitals, 9,57, 176-178,216,217,218, 252,313,316

isolated patients, 17, 120, 124-125, 129-130, 131

legislation, 58

liability, 130, 177

multidisciplinary teams, 252,272,280,338, 339

need, 120-122

nurses and social workers, 59, 101, 112, 117-119, 176, 240,

256,272,335

patient registries, 228

physicians, 59-60,61,74-75, 100-102, 168-170

private, 38-39, 178,236

problems, 120-135

quality control, role, 128-129, 176-178, 192, 196-197,235,

252

regional, 234, 252, 309, 310

respite care, 117-119, 123, 128, 134, 135, 282

social health maintenance organizations, 331,

333-334,335

standards, 59, 176-177, 252

State-level activities, 44,45,59,234-237,238, 240,243,

244,247,250-251,253, 302,309,310

veterans, 57, 216-217, 218, 220

workload, 121, 256

see also Competency issues; Discharge planning

Case studies

adult day care centers, 135,342

Alzheimer’s Association, 290,294,296

area agencies on aging, 9, 123-129, 146, 219,220,269,

272-273,342

case management, 122, 123-127, 134-135, 196-197

community health centers, 287

community mental health centers, 15,280

county referral system, 80-82, 92-93,94-96

home health agency, 324,328

hospital geriatric units, 314,315

nonuse of services, 108-110

referral to services, individual patient, 8-10

regional centers, 305-308

respite cam, 134, 135, 205, 214$324, 342

special care units, 163, 186,206

veterans, 205, 207, 205, 214, 219, 220

Catholic Charities, 241

Certification, see Licenses and permits

Children, 285

adult children, 9-10, 18, 19

Chore services, see Homemaker and chore services

Clinical services, 112

case management, 120-121

memory, 199

Cognitive deficits, 4,9-10, 12-13, 16, 17,27,91, 112

family caregivers, 19,51, 115-116, 185-186

memory, 5, 17, 110, 119, 199, 305

minority attitudes, 51, 95

quality control and, 166, 185-186, 189

variation in, 109, 112, 146-147, 330-331

see also Competency issues

Community Mental Health Services Act, 276,277,283

Community systems, 2,3,36,45, 124,251-253,255,336-339

administrative factors, 45, 250,251-253, 257

case management, 235, 238,240,247,252-253, 280,281-

282,283,285,286,302, 336,338,339

cost factors, 255, 337

health centers, 243,283-289

information and referral, 37,238,240,241,279-281, 283,

286,300,301,338

linkage, overall, 4,22,4648, 190-191,227,237,238-239,

240,243,245-246,279-283, 286-289,299-304,338-

339

long-term care, 251-253,254-256

medical services, 22,48, 243, 283-289

mental health centers, 15, 22, 48, 243, 274, 276-283

minority groups, 98-100, 336-339

national linkage system, 227-229, 253, 254, 278, 282-283,

288-289,303-304,339

outreach, 274, 282, 283, 288, 338

physician referral, 61

public education, 240,269,282,283,287-288, 302-304,

338
Index ● 409

quality control, 190-191

State/community linkage, 237,238-239,240,243, 245-256,

299-304

use and nonuse, 108-110, 111

veterans, 204,215, 216, 217, 218, 219, 221

see also County systems; Home care services; Local

systems; Nursing homes

Company programs, 37,65

nontraditional gatekeepers, 120, 235, 273-274,280, 296

see Employee benefits

Competency issues, 49,52-54,65-66, 139-156

criteria, 52-53, 139, 140, 141-144, 148, 152-155

decision-specific, 144

designated decisionmaker, 144-146, 152-155

enhancement methods, 146-147

linkage implications, 16, 147-148, 155-156

multidisciplinary teams, 145, 151

national system, 52-53,65-66, 140, 148, 155, 156

quality control and, 166-167

standards, 52-53, 139, 140, 141-148, 152-155

surrogate decisionmaking, 53, 139, 147, 148-155, 156,

166-167

variation in cognitive deficits, 109, 112, 146-147, 330-331

veterans, 217

Computer technology, 59,85,89-90,112,217, 221,232-233,

234,252,295,301,303, 306

Confidentiality, 252

Connecticut, 38, 100, 108, 133-134,232,326,328

Consent, see Competency issues

Consortia, 47, 179,251,252,261,284

Cooperatives

elderly, 37-38

rural, 44

Cost factors

attitudes toward, 27,35, 111, 113,253

case management, 273

community care, 255, 337

centainment, 322, 332-333

fee-for-service, 133,305

home care, 9

hospital geriatric care, 313-314,317

information, 83

linkage, 58-59

long-term care, 255-256

nursing homes, 238

quality control and, 165

Counseling, 108,269

black families, 75

case management and, 130-131

supprrt groups, 171, 205, 207, 215, 228, 230, 232, 238,

252,287,300

County systems, 9,22,26-27,35,46,240, 243,250,251,252

case management, 123-130,236, 240, 296

information and referral, 35,73,76-78,80-82,92-93, 94-96,

175,240,252

mental health, 279

minority groups, 51, 94-loo

outreach, 282

Court cases, see Litigation

Criteria, see Standards

Cultural issues, 50-52,97, 186

Day care, see Adult day care

Decisionmaking, 52-54,139-156

personal factors, 111-112, 115-116,117, 119

see also Case management; Competency issues

Delaware, 230,232

Dementia, general

causes, 5, 11-12

characteristics, 4-7, 11-18, 33,62

epidemiology, 11, 12, 14, 110,202

expertise on, 171, 175

nursing home residents, prevalence, 110

veterans, prevalence, 202

Demography, 14

caregivers, 18

language issues, 41,50,52,96-97, 186,305

see also Epidemiology; Geographic factors; Isolated

persons; Minority groups; Veterans

Demonstration projects

adult day care, 204

case management, 65, 133,252,255-256

community services, 248, 255, 336

information and referral, 240

long-term care, 65, 196-197,254-256,295, 329-336

Medicare, 42-43, 194,336

respite care, 108, 109, 110, 117-119, 134, 135

social health maintenance organizations, 48,329-336

voucher purchase, 196

Department of Defense, 22

Department of Health and Human Services, 181, 198,263,

270

see also specific administrative units

Department of Housing and Urban Development, 336

Department of Veterans Affairs, 201-221 (passim), 251

catchment ares, 57, 68, 209, 218

Depression, 12,13

Diagnosis and assessment, 5, 12, 16, 17-18,33-34,235,243,

246,253,276,280,285, 286,304,324,331

agency failings, 85-86

competency, 145, 146, 147, 148, 151

hospital teams, 311-318

nursing home preadmission, 245-246,247-248,272, 274

procedural standards, 45

regional centers, 48, 228, 240, 304-311

tracking, 85-86

veterans, 204-205, 216, 220

Diet, 12,265

Directories, 215,233,241,295

Discharge planning, 9,57, 176-178,216,252,313

veterans, 216, 217, 218

Diseases and disorders, other than dementia

alcohol abuse, 12,20

case management, 122, 125

causing dementia, 11-12

coexisting with dementia, 14, 16, 17, 18

competency criteria, 144, 149, 156

drug abuse, 12

information and referral, 299

linkage policy, 63

national linkage system, 228

Parkinson’s, 232

physical disabilities, 26

quality control, 166, 188
410 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

respite cam, 243

stroke, 109

District of Columbia, 37-38, 171, 183,236,295,323,324

Doctors, see Physicians

Domiciliary Care, 202-203,212,220

Drugs

antidepressants, 13

caregiver use, 20

causing dementia, 12

prescriptions, 61

Duke University, 27, 108, 109, 114, 117-119,232,323

Economic issues

insurance, 6,228,304-305,321-322

market research, 41, 133

see also Cost factors; Funding; Financial issues; Poverty

Education

background, 98, 186

caregiver, 228,238, 240,252, 253, 254, 276,280,300-301,

303,306,324

nontraditional gatekeepers, 120, 235,273-274,280,296

see also Professional education; Public education

Elderlink, 39,40

Eligibility, 8,83,93, 103,337

adult day care, 342-343

Alcohol, Drug Abuse, and Mental Health Services grants,

276

area agencies on aging, 265, 266,272-273

Medicaid, 24,87,93, 103, 110,210,236,237,238, 240,

241, M-4-245, 248,249,272,274,322, 336

Medicine, 24,87,93, 193,276,318-323,329, 330,337

social health maintenance organizations, 332

space availability and, 213-214,220

State rules, 228,236,237,238,240, 241,244-245,248,

249,250,251

use v., 109

veterans, 56, 87,202, 210-214, 215, 216, 217, 220,221

Emergency services, 185, 191,276

case management, 130

Employee benefits, 37,44

Employment and unemployment

informal caregivers, 19, 114

workload, case managers, 121,256

Epidemiology, 11, 12, 14, 110,202

Equipment, 287

Ethnic groups, see Minority groups

Evaluation, 161-167, 194,220,252

adult day care, 172-174

tests, 143,243,246

see also Diagnosis and assessment; Quality control

Experts, 171,175

Families, 3,4,265,269,272,300-301

attitudes of, 9-10,20-21,35,74-75, 101, 107, 111, 113-119,

124, 125-126,128, 132, 135, 160-161, 189,221,233-

234,283

blacks, 75,297

caregiver attitudes toward, 113-115, 124, 125

as caregivers, 3,4, 18-22, 26-28, 33, 113-119, 120, 131,

171,205,207,215,228, 230,276,279,283,300-301

case management, role, 8-10, 107, 108, 123-129, 131,

132-134, 154, 155, 194-196,273,286,327

characteristics, general, 4,9-10, 11, 18-22, 33, 132-134

cognitive impairment, 19,51, 115-116, 185-186

competency decisions and, 53

goals specification, role, 165-167, 184-185, 194-196

hospital geriatric units, 316

information and referral, 3,73,74-80, 126, 165-169

linkage to services, general, 5-6, 15-18,33,60, 169-170,

194, 196,240,241,301-303

quality control, role, 74, 128-129, 160-161, 165-168184-

185, 189, 190, 194-196

support groups, 171, 205, 207, 215,228, 230,232, 238,

252,287,300

surrogate decisionmaking, 149-150, 154-155, 166-167

see also Adult children; Children; Spouses

Federal Government, 41-43

block grants, 236,240,243,249,276-277, 321-322,342

funding, 8,25,41,47,62,93,236, 240,243,249,261,

263-267,269,270,271, 274,276-277,283-285, 292,

320-322330,336

information and referral, 41-42,240

military personnel, active, 22

public education, 41,240

research, 8,41,42, 240,244, 292,336

v. State-level action, 63-64

see also Laws, specific; Medicaid; Medicare; National

systems; Policy issues; Regulations; Veterans; specific

agencies and departments

Financial issues, 41,56,74, 164,246,299

caregiver guidance, 269

insurance, 6,228,304-305, 321-322

Prospective Payment System, 322

risk-based, 336, 337

sliding-scale charges, 253

voucher purchase, 196

see also Cost factors; Funding; Public assistance

Florida, 232,296,305

Foreign countries, 177,314

Friends and acquaintances, 4, 18-22,26-28,33, 113-119

nontraditional gatekeepers, 120,235,273-274,280, 296

Funding

agency allocation, 25-26,65, 122, 134,228,235,255-256,

274,276,282,288,297, 303,310,317,327,335,

338-339,344

case management, 134-135

Federal, 8,25,41,47,62,93,236, 240,243,249,261,

263-267,269,270,271, 274,276-277,283-285, 292,

320-322330,336

home services, 45, 134

information about, 73,75,80,83,86-87,89-90, 93

limiting factors, 6,7,23,24-26,80-90, 103, 135

linkage v. services, 7,65

multiple sources, 3, 23, 33, 287, 296

quality control and, 191-192, 194

research, 8, 23

State-level, 44,45,46,47,227-257 (passim), 272,300,304,

305,330

veterans, 204, 220

see also Public assistance

Gender differences, 201

General Accounting Office, 323

Geographic factors, 9

area agencies on aging, 266-267
Index *411

information centers, 233

long-distance caregivers, 9-10, 19,57

rural areas, 23,44, 120,218,252, 273,287,293,297, 306

service locations, 86, 227

Veterans Affairs catchment areas, 57,68,209,218

see also Isolated persons

Georgia 84,230

Government role, see County systems; Federal Government;

Local systems; Public assistance; Regulations; State

systems

Guardianship, see Competency issues: surrogate

decisionmaking

Hartford Foundation, 337

Health Care Financing Administration, 41,42,337

Health maintenance organizations, 48,329-336

Health Resources and Services Administration, 285

Hispanic Americans, 50,51,94,96,151

language issues, 41,50,50,52,96-97,305

Homemaker and chore services, 108, 109, 130, 191, 197,219,

243,250,251,265,324

Home care services, 39,41, 183,240,251,252

area agencies on aging, 240,249,265,267

assessment, 280

attitudes of formal caregivers, 117, 129, 130

attitudes of informal caregivers, 117-118, 123

case management, 41, 191,238,252,325-326, 327,333,

335

funding for, 45, 134

information and referral, 324-325,327,328

home health agencies, 9-10,22,46,48,238,244, 252,

318-329

isolated persons, 129-130

Older Americans Act, 8, 178,240,321

professional education, 183

public education, 327

standards, 191-192, 251

State systems, 228,238,240,241,243, 246,249,250,251

training, 183

Use of, 108, 109, 110, 134-135

veterans, 204,208,209,219,220

Hospitals, 22,240,243,276

case managers and discharge planners, 9,57, 176-178,216,

217,218,252,313,316

geriatric programs, specialist, 48, 182,311-318

information on, 182,316,317

veterans cam, 55-58,202-221 (passim), 240

see also Discharge planning

Husbands, see Spouses

IBM, 37,65

Illinois, 44,4546, 191,218,220,230-231, 235,250-251,253,

285-86,305-306,307,308, 326

Indians, see American Indians

Information and referral, 16,28,29,30,34-35,42, 73-103,

252,299

adult day care centers, 3,342,343,344

Alzheimer’s Association, 34,41,93, 171,289-290,293-

296,298

area agencies on aging, 9,37,39,44,84, 218,219,

267-270,272,275

brochures, 40,54,98, 170,231,241,242,287

caregivers, 6,26-27,73,74-80, 168-170, 183, 185-186, 197,

205

community agencies, 37,238,240, 241,279-281,283,286,

300,301,338

competency issues, 54-55

cost factors, 83

county activities, 35,73,76-78, 80-82,92-93,94-96, 175,

240,252

defined, 73-74,227,262

discharge planners, 9,57, 176-178,216,217,218, 252,313

employee benefit programs, 37

family caregivers, 3,73,74-80, 126,165-169

Federal action, 41-42,240

funding and services, general, 73,75,80,83,86-87,89-90,

93

home services, 324-325,327,328

hospital geriatric programs, 182,316,317

language issues, 41,50,52,96-97, 186,305

legal issues and services, 41,74

legislation, 58

limitations, 4-7, 103, 167-190, 198

minorities, 75, 93-100

national system, 41-42, 197-198

need, 73-103

personal case study, 8-10

physicians, 59-60,61,75, 100-102,168-170

private sources, 37-41

quality control, 7,82-89, 160, 165, 167-190, 197

regional centers, 301,303,306, 308-309,310

regulatory procedures, 181

resource lists, 37,83,85,89-90,218, 221,233,281,300,

301,303

social health maintenance organizations, 333

social workers, 169-170

special problems, 90-100

statewide, 91, 171,230-235,238, 240, 243, 244, 299-301,

303,306,308-309,310

termonology, 87-88

use of v. knowledge of services, 26-27,34-35,76-90,

101-102, 103, 107, 112, 135

veterans services, 214-215, 216, 217, 221

see Case management; Computer technology; Outreach;

Publications; Public education; Telephone services

In-home services, see Home services

Institutionalization, 246,280

case management and, 135

veterans, 203-204, 208, 209, 218

Instrumental activities of daily living, see Self-care abilities

Insurance, 6,228,304-305,321-322

Interdisciplinary approach, see Multidisciplinary approach

Intergovernme ntal Health Policy Project, 246

Iowa, 46,47, 120,252

Isolated persons, 5, 14-15, 16-17,49, 107, 111, 112, 124,293,

311,336,338

case management needs, 17, 120, 124-125, 129-130, 131

companions, paid, 75, 108,251

home services, 129-130

long-distance caregivers, 9-10,19,268-269,275, 279,295

surrogate decisionmakers, 150

see also Outreach
412 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

Kansas, 74,230,232

Kentucky, 285

Language issues, 41,50,52,96-97,186,305

Laws, specific

case management, 58

Community Mental Health Services Act, 276,277,283

competency, 155

Medicare, 42

Mental Health Services Act, 277

National Institute on Aging, 41

Older Americans Act, 8, 178,240,248,249,250, 263-275

(passim), 321

Omnibus Budget Reconciliation Act, 337

proposed, 58

Public Health Services Act, 283-285

veterans, 210-211

Legal issues and services, 33,62,75,108, 141, 147,151-152,

265,269,296

confidentiality, 252

information, 41,74

liability, 66-67, 130, 177, 190, 198

litigation, 144, 145, 151, 177,250

quality control, 66-67, 130, 166, 188, 190, 198

see also Competency issues; Eligibility; Regulations

Licenses and permits, 23, 177, 179, 180-182, 187, 191,

318-320,329

voluntary accreditation programs, 182-183

Linking systems, general, 3-6,58-59,63,256-257

caregiver characteristics, 21-22,78-80, 125-129

community level, 4,22,46-48, 190-191,227,237,238-239,

240,243,245-246,279-283, 286-289,299-304,338-

339

competency, 16, 147-148, 155-156

decisionmaking, general, 52-54, 139-156

defined, 64,227,228

determining factors, 15-26,49-60

families, general, 5-6, 15-18,33,60, 169-170, 194, 196,

240,241,301-303

framework, 28-36

hospital geriatric programs, 48,311-318

information and referral, 89-90

legislation, 58

liability, 130, 190, 198

long-term care, 58,237,238-239,240,243, 245-256,299-

304

minorities, 49-52,75, 96-100

patient characteristics, 4-7, 11-18,33,62

policy issues, 28-36,63-68, 190-197

private agencies, 36-41

quality control, 2,32-34,66-67,261

regional activities, 240-241,243,299,301, 303

service environment, characteristics, 25-26, 33

social health maintenance organizations, 48,333-335

State-level, 43-46,227-257

veterans, 22,46-47,49, 55-58,67-68,209-221

see also Case management; Information and referral;

National systems; Outreach; Public education

Litigation, 144, 145, 151, 177,250

Local systems, 22,25,36,62,84, 179

case management, 236-237,240

see also Area agencies on aging; Community systems;

County systems

Long-term care

community systems, 251-253,254-256

demonstration projects, 65,196-197,254-256,295, 329-336

linkage, general, 58,237,238-239,240,243, 245-256,

299-304

ombudsmen, 178-179

social health maintenance organizations, 48, 329-336

State/community linkage, 237,238-239,240,243, 245-256,

299-304

State systems, 178-179,237,240,238-239, 245-253,254-

256

veterans, 203-204, 216-217,218-219

see also Nursing homes; Residential care; Respite care

Imng-Term Care CHOICES, 183

Losing a Million Minds: Confronting the Tragedy of

Alzheimer’s and Other Dementias, 3,73, 187,201

Maine, 109

Market research, 41, 133

Massachusetts, 75,91,205,207,212,214, 232

Medicaid, 9,44,46-47,75,245,250, 251,304-305

eligibility, 24,87,93, 103, 110,210, 236,237,238, 240,

241,244-245,248,249, 272,274,322,336

quality control, 177, 179, 181

Medical services, 112,240,305,322

community systems, 22,48,243, 283-289

equipment, 287

research, 8, 228,240,244,292

see also Hospitals; Nursing services; Physicians

Medicare, 42-43,236,304-305,337

demonstration projects, 42-43, 194,336

eligibility, 24,87,93, 193, 276,318-323,329,330, 337

home health agencies, 318-323,329

mental health services, 279

quality control, 177, 179, 181, 194

social health maintenance organizations, 329-332, 334-335,

336

Memory, 5, 17, 110, 119, 199,305

Mental health services, 108,305,313,315

community centers, 15,22,48,243, 274,276-283

Medicare, 279

State administration, 247

Mental Health Services Act, 277

Mexican Americans, 94

Michigan, 75,76, 109,230,233,234,270-271, 272,274,293,

295

Military personnel, 22

see also Veterans

Minnesota, 68, 109, 146,218,329

Minority groups

American Indians, 50,94, 151

attitudes, 51, 95

Alzheimer’s Association, 293,298

blacks, 75, 150-151,287

caregiver characteristics, 19-20,51,75, 96-97, 151-152

community agencies and, 98-100, 336-339

county systems, 51, 94-loo

Hispanic Americans, 41,50,51,52,94,96-97, 151,305

information and referral needs, 75,93-100

language issues, 41,50,52,96-97, 186,305

linkage problems, 49-52,75,96-100
Index ● 413

On Lok Senior Health Services, 48, 190-191,336-339

surrogate decisionmaking, 150-151

Missourii, 233,234

Models, see Demonstration projects

Multidisciplinary approach, 101,280,304-318

case management, 252, 272,280, 338, 339

competency decisions, 145, 151

veterans care, 204,205, 216, 217, 220

National Association for Home Care, 318

National Association of Community Health Centers, 286

National Association of State Units on Aging, 39,230,269

National Council of Community Mental Health Centers, 278

National Council on the Aging, 183,340

National Institute of Mental Health, 252

National Institute on Adult Daycare, 340

National Institute on Aging, 41,42,240,244

National Institutes of Health, 316

National Long-Term Care Surveys, 108, 134,321,323

National Long-Term Care Channeling Demonstration Project,

65, 196-197,255-256

National Nursing Home Survey, 110

National systems, 15,36,48-49,58-59,62, 63-68,228,

244-245,253-254,255, 257

adult day care, 344

agency categories, 48-49,229-237,261-344

Alzheimer’s Association, 34,41,48,93, 170-174, 187,

297-299

area agencies on aging, 263,274-275

community agencies, 227-229,253,254,278, 282-283,

288-289,303-304,339

competency issues, 52-53, 65-66, 140, 148, 155, 156

education and referral, 41-42

home health agencies, 327-329

hospital geriatric programs, 311-312,317-318

identifying logo/telephone number, 33

information and referral, 41-42, 197-198

private agencies/organizations, 36-37,48-49

quality control, 159, 160,178, 183,190,197-198

social health maintenance organizations, 335-336

State linkages, 227-229,244,253,254, 261,303-304,

310-311

veterans, 57-58,67-68,215,220, 221

see also Federal Government

New Hampshire, 46,230,231,232,252

New Jersey, 74, 191,232,307,310

New Mexico, 152, 166

New York, 141, 151, 152, 179,229,232,237,238-240, 266,

268,271,274,293,314, 326,329,342

North Carolina 18

Duke University program, 27, 108, 109, 114, 117-119,232,

323

Nursing homes, 22-23

American Association of Homes for the Aging, 186,263,

269

competency of residents, 141

informal caregivers, 20,27

preadmission screening, 245-246,247-248,272, 274

quality control, 177, 178-179, 181, 184

regulations, 228

special care units, 163, 186,228

State actions, 228,237,238,245-246, 247,249

use, 109-110

veterans, 202-203, 211-212, 220

Nursing services

case management, 59, 101, 112, 117-119, 176, 240,256,

272,335

home health agencies, 319-329

professional associations, 176,319-320,322,326, 329

quality control, 191

referral sources, 169-170

unnecessary, 45

use, 108, 109, 117-119

veterans, 205, 206, 207, 217

Nutrition, 12,265

Ohio, 26-27,35,46,47,73,76-78, 80-90,91,92-93,108, 111,

171, 175, 191, 192,230,236-237,252-253, 267,293,

294-295

Oklahoma 46-47,91, 191, 193,218-219,251-252

Older Americans Act, 8, 178, 240, 248, 249,250,263-275

(passim), 321

Older Veterans: Linking VA and Community Resources, 202

ombudsmen, 178-179

Omnibus Budget Reconciliation Act, 337

Organizational factors, 62, 178, 183,256

consortia, 47, 179, 251,252, 261,284

cooperatives, 23, 37-38,44,89-90

networking, 179, 263; see also Area agencies on aging

State-level, 46,247,253,254

see also Administrative factors; Multidisciplinary approach

Oregon, 45-46, 122,177,246,248-249, 251,253,329

Outreach, 28,29,30-31,33, 119-120, 135,279

adult day care centers, 3,344

Alzheimer’s Association, 34,297

area agencies on aging, 44, 108,235, 265, 272-274,275

community agencies, 274,282, 283, 288, 338

county, 282

defined, 107, 119-120,227,235,262

education v., 74

home health agencies, 327,328

hospital geriatric programs, 317

legislation, 58

nontraditional gatekeepers, 120, 235, 273-274,280,296

regional centers, 303,310,311

senior citizen centers, 120,240

social health maintenance organizations, 334-335

State-level, 44,234,235,244,309

veterans, 218

see also Isolated persons

Outreach With the Elderly: Community Education,

Assessment, and Therapy, 279

Parkinson’s disease, 11,232

Patients

attitudes, 53, 111-113, 119-120, 135, 166, 188-189, 192,

193, 195,279

case study, 8-10

characteristics, general, 4-7, 11-18, 33, 62

Pennsylvania, 108, 110,123-130, 134, 191,206,229-230,

232,237,307-308,309

Personal care services, 128, 197,243

Personal factors

nonuse of services, 107, 110-122

sexuality, 41
414 ● Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

see also Cognitive deficits; Psychiatric and behavioral

factors; Self-care abilities

persons

goals specification and quality assessment, role, 165-167,

188-189,192,193,194-196

quality control, role, 166, 188

registries, 228

see also Competency issues; Isolated persons; Self-care

abilities

Physicians, 108, 109, 110, 149,205,206,232,252, 308,321

case management, 59-60,61,74-75, 100-102, 168-170

information and referral, 59-60,61,75, 100-102, 168-170

Pick’s disease, 11

Policy issues, 3,4,63-68,245,246

advocacy, 122, 178,218,228,235,248, 291-292,299,300

case management, 197

competency, 140, 147, 148, 155

linkage framework, 28-36,63-68, 190-197

quality control, 190-197

veterans, 215

see also Regulations; Standards

Population factors, see Demography; Minority groups

Poverty, 45, 189,211,212,240,243, 244,249,250,254,

284-285,287,293,298, 338

see also Medicaid

Prescriptions, 61

Private agencies and organizations, 36-41,243-244,251,252

adult day care, 340

case management, 38-39, 178,236

information and referral, 37-41

insurance, 6,228,304-305,321-322

national systems, 36-37,48-49

quality control, 182-183, 189-190

statewide programs, 44, 234

types, 35,364.1

use, 108

see also Alzheimer’s Association; Voluntary agencies and

associations

Professional and provider associations, 155, 170,271

American Association of Homes for the Aging, 186,263,

269

American Nurses’ Association, 176

National Association for Home Cam, 318

National Association of Community Health Centers, 286

National Association of State Units on Aging, 39,230,269

Visiting Nurses Associations, 319-320,322,326,329

see also Alzheimer’s Association

Professional education, 4748,228,238,240,244, 253,280,

287,299,303,306

case managers, 121, 128, 145-146, 148

competency issues, lawyers, 152

home care services, 183

quality control and, 187-188, 191

respite cam, 243

veterans clinicians, 204, 206-208, 219

Prospective Payment System 322

Psychiatric and behavioral factors, 13-14, 16,27, 124,240,

276,313,315,338,342-343

depression, 12, 13

quality indicators, 188

stress on caregivers, 20-21, 161, 324

see also Cognitive deficits; Competency issues; Diagnosis

and assessment; Mental health services

Public assistance, 75,228

see also Eligibility; Medicaid; Medicine

Publications, information and referral, 182-183, 197,241,

266-267,279,287,297, 299

brochures, 40,54,98, 170,231,241,242,267, 287

directories, 182,215,233,241,295

resource lists, 37,83,85,89-90,218,221, 233,281,300,

301,303

Public education, 28,29,30,42,73,78-80, 103,252

adult day care centers, 344

Alzheimer’s Association, 41,229,272,289,290,297, 298

area agencies on aging, 267,269,271-272,275

brochures, 40,54,98, 170,231,241,242,287

community systems, 240, 269,282, 283,287-288,302-304,

338

defined, 73,227,235,244,262

Federal, 41,240

home health agencies, 327

hospital geriatric programs, 316-317

legislation, 58

need, 73-103, 135

regional centers, 242,299,309-310

social health maintenance organizations, 334

State-level, 44,47,229-230,232,234, 238,240,244,299,

303-304,309-310

Public Health Service, 22

Public Health Services Act, 283-285

Quality control, 3,54-55,166,188,159-198

adult day care, 172-174

case management, 128-129, 176-178, 192, 196-197,235,

252

cognitive deficits and, 166, 185-186, 189

community systems, 190-191

competency issues, 166-167

cost, 165

defined, 159, 160, 161-161, 163-165

experts, 171, 175

family role, 74,128-129,160-161,165-168 184-185, 189,

190, 194-196

funding and, 191-192,194

information and referral, 7,82-89, 160, 165, 167-190, 197

internal, 182

legal issues, 66-67, 130, 166, 188, 190, 198

licenses and permits, 23, 177, 179, 180-181, 187, 191,

318-320,329,182-183

linkage system, general, 2,32-34,66-67,261

Medicaid/Medicare, 177, 179, 181, 194

national system, 159, 160, 178, 183, 190, 197-198

professional education, 187-188, 191

staff changes and, 183, 188

State-level, 161, 178-179, 191

voluntary accreditation programs, 182-183

see also Evaluation; Regulations; Standards

The Quality of Medical Care: Information for Consumers, 188

Referral, see Information and referral; Telephone services

Regional activities

case management, 234, 252, 309, 310

case studies, 305-308

diagnostic and assessment centers, 48,228,240,304-311

information and referral, 301,303,306,308-309, 310
Index • 415

linkages, general, 240-241,243,299,301, 303

outreach, 303, 310, 311

public education, 242,299,309-310

Veterans Affairs catchment areas, 57,68,209,218

Regulations, 23,24,46,62, 179-182,253

area agencies on aging, 263-268

Medicaid, 110,236

nursing homes, 228

see also Eligibility; Licenses and permits; Standards

Relatives, see Families

Research, 23,306

biomedical, 8,228,240,244,292

competency issues, 146, 156

Federal, 8,41,42,240,244,292, 336

market, 41, 133

policy, 299

veterans, 202, 204,205, 208, 212

see also Demonstration projects

Residential care, 39,41,204, 109

see also Nursing homes

Resource lists, 37,83,85,89-90,218,221, 233,281

Respite care, 205-206,208,209,228, 240,243,265,324,342

case management, 117-119, 123, 128, 134, 135, 282

case studies, 134, 135,205,214,324,342

demonstration projects, 108, 109, 110,117-119, 134, 135

volunteers, 117-119

Robert Wood Johnson Foundation, 133-134, 179,337

Rural areas, 23,44, 120,218,252,273,287, 293,297,306

Satisfaction, see Attitudes

Self-care abilities, 13, 16, 110

dementia v. other diseases, 109

isolation and, 15

variation in, 112

Senior citizen centers, 240

outreach, 120

Services

acute care, 203, 220

agency allocation, 25-26,65, 122, 134,228,235, 255-256,

274,276,282,288,297, 303,310,317,327,335,

338-339,344

characteristics, 11, 22-26, 123-124

clinical, 112, 120-121, 199

consolidation, 45-46, 227,245-254, 256-257

consortia, 47, 179, 251,252, 261, 284

coordination, agencies, 121,218-219,221,235, 240,245,

284,285,299,310

defined, 227

dementia friendly, 33,93,228,257,298,344

emergency, 130, 185, 191, 276

homemaker and chore, 108, 109, 130, 191, 197,219,243,

250,251,265,324

knowledge of v. use of, 26-27,34-35,76-90, 101-102, 103,

107, 111$112, 135

linkage v., 64,228

nontraditional, 120

nonuse, factors, 26-28,77-78, 107, 108-122

paid, 26

personal care, 128, 197,243

space availability, 213-214,220

transportation, 124, 130, 185,265,279,311

types needed, 5-6,15,6,123-124,295

use of, 108-119, 134-135

see also Counseling; Diagnosis and assessment; Home

services; Linking systems, general; Legal issues and

services; Medical services; Mental health services;

Nursing services; Physicians; Residential care; Social

services; Telephone services

Sexuality, 41

see also Gender differences

Siblings, 18

Social health maintenance organizations, 48,329-336

Social Security, 75

Social services, 35,46,240,243,252

case managers, social workers as, 59, 101, 112, 117-119,

240,256,272,335

health maintenance organizations, 48,329-336

senior citizen centers, 120, 240

information sources, social workere as, 169-170

State-level, 232-233

use, 108

veterans, 57, 68, 205, 216-218

see also Counseling

Social Services Block Grants, 236,240,243,249,321-322,

342

South Carolina, 230

Spouses

as decisionmakers, 149-150

as caregivers, 18, 19

support groups, veterans, 205,206,207,214

Standards, 54-55,159, 162,164-165, 181,186-190,191, 197

case management, 59, 176-177, 252

competency issues, 52-53, 139, 140, 141-148, 152-155

computerized data, 306

diagnosis, 45

home services, 191-192,251

see also Eligibility

State Financing of Long-Term Care Services for the Elderly,

245

State Long-Term Care Reform: Development of Community

Care Systems in Six States, 245

State systems, 4,22,25,36,43-46,62, 63-64,227-257

administrative factors, 45,46,235,236,244,245-251,

253-257

adult day care, 228,240,244,250

case management, 44,45,59,234-237,238, 240,243, 244,

247,250-251,253,309, 310

community linkage, 237,238-239, 240, 243,245-256, 299-

304

competency, 155

eligibility rules, 228, 236, 237,238, 240, 241,244-245,

248,249,250,251

v. Federal action, 63-64

finding, 44,45,46,47,227-257 (passim), 272,300,304,

305,330

home services, 228,238,240,241,243, 246,249,250,251

information and referral, 91, 171,230-235,238,240, 243,

244,299-301,303,306, 308-309,310

linkage systems, overall, 43-46,227-257

long-term care, 178-179,237,238-239, 240,245-253,254-

256

mental health services, general, 247

national system, 227-229, 244, 253, 254,261, 303-304,

310-311
416 . Confused Minds, Burdened Families: Finding Help for People With Alzheimer’s & Other Dementias

nursing homes, 228,237,238, 245-246,247, 249

organizational factors, general, 46, 247, 253, 254

outreach, 44, 234,235, 244, 310

private agencies and organizations, 44,234

public education, 44,47,229-230,232,234, 238,240,244,

299,303-304,309-310

quality control, 161, 178-179, 191

task forces, 3,74, 100, 161,228,241,243,299

telephone services, 39,40,91-93,230,231-233, 234,238,

301

veterans, 203-204

see also Alzheimer’s Association; specific States

Statutes, see Laws, specific

Supplemental Security Income, 75

Support groups, 171,205,207,215,228, 230,232,238,252,

287,300

Task forces, 3,74, 100, 161,228,241,243,299

Telephone services, 175-176,265,280,331-332

Alzheimer’s Association, 41,93,290,293-296

hotlines, 130

nationwide, 33, 39,40,42

statewide, 39,40, 91-93, 230, 231-233, 234, 238, 301

veterans, 205

Tests and testing, 243,246

competency, 143

Texas, 3,232

Transportation services, 124, 130, 185,265,279,311

Turf guarding, 4,24-25,36,41-42,46, 48,62,88-89,247,

249,252,253,256,285

United Seniors Consumer Cooperative, 23

United Seniors Health Cooperative, 37-38,89-90

University of California, 244

University of Minnesota, 146

University of New Mexico, 152, 166

University of Southern California, 244

University of Washington, 122

Veterans, 22,4647,49,55-58,67-68, 201-221,251

adult day care, 204, 209,220

case management, 57,216-217, 218, 220

case studies, 205,207,205,214,219, 220

clinicians for, education, 204, 206-208, 219

Related OTA Report

● Losing a Million Minds:

OTA-BA-323, April 1987

Confronting the

NTIS order #PB

community services, 204,215,216,217,218, 219,221

competency issues, 217

diagnosis and assessment, 204-205,216,220

discharge planning, 216,217,218

domiciliary Care, 202-203,212,220

eligibility, 56,87, 202,210-213,215, 216,217,220,221

home services, 204,208,209,219,220

information and referral, 214-215,216,217,221

institutionalization, 203-204, 208, 209, 218

linking systems, general, 22,4647,49,55-58,67-68,

209-221

long-term care, 203-204,216-217,218-219

multidisciplinary services, 204, 205, 216, 217, 220

national system, 57-58, 67-68, 215, 220, 221

non-VA services, 216-221

nursing services, 205, 206,207, 217

outreach, 218

research, 202, 204, 205, 208,212

social services, 57, 68, 205, 216-218

spouses, 205,206,207,214

State systems, 203-204

telephone services, 205

Virginia, 266-267,271,285,287, 342

Visiting Nurses Associations, 319-320,322,326,329

Voluntary agencies and associations, 22,35,78,234,243-244

accreditation programs, 182-183

home services, 183

legal, competency decisions, 152

quality control, 180, 189-190

see also Alzheimer’s Association; Professional and

provider associations

Volunteers and volunteering, 183

gatekeepers, 120,235,273-274,280, 296

respite care, 117-119, 64

Washington Consumers’ Checkbook, 182

Washington State, 14, 15, 122, 120, 145,279,280,282,315

West Virginia, 219

Wisconsin, 45-46,53-54,74, 171, 196,218,232-233,249-

250,253,290

Wives, see Spouses

Workload, case managers, 121,256

Zen and the Art of Motorcycle Maintenance, 161

Tragedy of Alzheimer’s Disease and Other Dementias.

87-183 752/AS.

● Summary: Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and Other

Dementias. OTA-BA-324, April 1987. GPO stock #052-003-01061-5; $2.50.

NOTE: Reports are available through the GPO (Government Printing Office), Superintendent of Documents, Dept. 33, Washington,

DC 20402, (202) 783-3238; and the NTIS (National Technical Information Service), 5285 Port Royal Road, Springfield, VA

22161, (703) 487-4650.