Special Care Units for People With

Alzheimer's and Other Dementias:

Consumer Education, Research,

Regulatory, and Reimbursement Issues

August 1992

OTA-H-543

NTIS order #PB92-228444
Recommended Citation:

U.S. Congress, Office of Technology Assessment, Special Care Units for People With

Alzheimer’s and Other Dementias: Conwmer Education, Research, Regulatory, and

Reimbursement Issues, OTA-H-543 (Washington, DC: U.S. Governrnent Printing Office,

August 1992).
Foreword

Several million Americans have Alzheimer’s disease or another disease or condition that

causes dementia. As our population ages, the number of people with these devastating diseases

and conditions will increase relentlessly. Families take care of individuals with dementia at

home for as long as possible, but most individuals with dementia are likely to spend sometime

in a nursing home in the often long course of their illness.

Until recently, little attention has been paid to the special needs of nursing home residents

with dementia. In many nursing homes, they have received and continue to receive

inappropriate care that exacerbates their cognitive impairments and behavioral symptoms and

further reduces their quality of life. There has been a pervasive feeling that nothing positive

can be done for nursing home residents with dementia. More often than nondemented

residents, they have been overmedicated and physically restrained.

As awareness of Alzheimer’s and other dementing diseases has increased, innovative

approaches to caring for people with dementia have been developed. Some experts have

recommended that nursing homes establish special units for their residents with dementia.

OTA estimates that by 1991, 10 percent of all U.S. nursing homes had established at least one

such unit.

Special care units promise to provide better care for individuals with dementia than these

individuals would receive in nonspecialized nursing home units. On the other hand, existing

special care units vary greatly, and many people believe that some special care units are

established only for marketing purposes and actually provide nothing special for their

residents.

This OTA report analyzes the available information about special care units for people

with dementia. It discusses ways in which the Federal Government could encourage and

support what is positive about special care units and at the same time protect vulnerable

patients and their families from special care units that actually provide nothing special for their

residents.

This is OTA’s third report on Alzheimer’s-related public policy issues. Two previous

OTA reports, Losing a Million Minds: Confronting the Tragedy of Alzheimer’s Disease and

Other Dementias and Confused Minds, Burdened Families: Finding Help for People With

Alzheimer’s and Other Dementias, have focused on biomedical and health services research

and other components of the care needed by individuals with dementia. OTA hopes that these

reports help to define and clarify the problems raised by Alzheimer’s and other dementias and

identify ways in which the Federal Government can assist in solving them.

OTA was aided in the preparation of this report by members and staff of the Alzheimer’s

Association, staff of the National Institute on Aging, special care unit researchers, State

officials, and others. OTA wishes to thank all these individuals. OTA particularly wishes to

thank Nancy Mace for her valuable contributions to this and OTA’s two previous reports on

Alzheimer’s and other dementias. As with all OTA reports, the content of this report is the sole

responsibility of the agency and does not necessarily reflect the views of these individuals or

the members of the Technology Assessment Board.

/j/

AA7# -.

JOHN H. GIBBONS

Director

. . . Ill
Special Care Units for People With Alzheimer’s and Other Dementias:

Consumer Education, Research, Regulatory, and Reimbursement Issues

OTA Project Staff

Roger C. Herdman, Assistant Director, Health and Life Sciences Division

Clyde J. Behney, Health Program Manager

Project Staff

Katie Maslow, Senior Analyst

Kerry Kemp, Division Editor

Support Staff

Marian Grochowski, Office Administrator

Eileen Murphy, P.C. Specialist

Kim Holmlund, Word Processing Specialist

Kelly Faulks, Secretary

Contractors

Joan Hyde, University of Massachusetts at Boston

Nancy Mace, Pacific Presbyterian Medical Center
Contents

Page

Chapter 1: Overview and Policy Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Chapter 2: Nursing Home Residents With Dementia:

Characteristics and Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Chapter 3: Special Care Units for People With Dementia:

Findings From Descriptive Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83

Chapter 4: Special Care Units for People With Dementia:

Findings From Evaluative Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111

Chapter 5: Regulations and Guidelines for Special Care Units . . . . . . . . . . . . . . . . . . . . . 133

Chapter 6: Regulations and Interpretations of Regulations That Interfere

With the Design and Operation of Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . 159

Appendix A: Diseases and Conditions That Cause Dementia . . . . . . . . . . . . . . . . . . . . . . 173

Appendix B: Conceptual and Methodological Issues in Research on

Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174

Appendix C: Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178
Chapter 1

Overview and Policy Implications
Contents

Page

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

Congressional Requests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . 4

Policy Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Organization of the Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

NURSING HOMES AND DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

The Clinical Syndrome of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

The Prevalence of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . * . . . . . . . . . . . . . . 9

Nursing Home Use by Individuals With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Characteristics of Nursing Home Residents With Dementia . . . . . . . . . . . . . . . . . . . . . . . . 10

Problems in the Care Provided for Nursing Home Residents With Dementia . . . . . . . . 12

Negative Consequences for Nursing Home Residents With Dementia, Their

Families, Nursing Home Staff Members, and Nondemented Nursing

Home Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15

Six Theoretical Concepts of Specialized Dementia Care and Their Implications

for Staff Composition and Training and the Individualization of Care . . . . . . . . . . . . . 16

Ideas About Special Care Units From Other Countries . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Findings From Research on Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

THE REGULATORY ENVIRONMENT FOR SPECIAL CARE UNITS . . . . . . . . . . . . . . 32

The Nursing Home Reform Provisions of OBRA-87 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33

Existing State Regulations for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34

POLICY IMPLICATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .35

Implications for Consumer Education About Special Care Units . . . . . . . . . . . . . . . . . . . 35

Implications for Research on Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37

Implications for Government Regulation of Special Care Units . . . . . . . . . . . . . . . . . . . . . 39

Implications for Reimbursement for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . 42

LEGAL AND ETHICAL ISSUES IN SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . ..43

Issues With Respect to Locked Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

Issues With Respect to Admission and Discharge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44

Issues With Respect to Consent for Research Participation . . . . . . . . . . . . . . . . . . . . . . . . . 45

OTHER ISSUES OF IMPORTANCE TO NURSING HOME RESIDENTS

WITH DEMENTIA . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47

The Availability of Physicians’ Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .47

The Availability of Mental Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 48

The Use of Psychotropic Medications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .49

ALTERNATES TO SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .49

Initiatives To Reduce The Use of Physical Restraints for All Nursing Home Residents. 50

Dementia Training Programs for Nursing Home Staff Members . . . . . . . . . . . . . . . . . . . . 50

Specialized Programs for Residents With Dementia in Nonspecialized Nursing

Home Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51

Specialized Living Arrangements Outside Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . 51

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52

Boxes

BOX Page

l-A. A Special Care Unit in Lynden, Washington . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

l-B. The Development of Excess Disability in a Nursing Home Resident With Dementia. 14

l-C. The Use of Behavioral Interventions With a Nursing Home Resident With Dementia. 18
Chapter 1

Overview and Policy Implications

INTRODUCTION

At least half of all nursing home residents in the

United States have dementia. As awareness of

Alzheimer’s disease and other diseases that cause

dementia has increased in recent years, so have

complaints and concerns about the quality and

appropriateness of the care provided for individuals

with dementia by most nursing homes. In response

to these complaints and concerns, some nursing

homes have established a special care unit-that is,

a physically separate unit in the nursing home that

provides, or claims to provide, care that meets the

special needs of individuals with dementia. Such

units are referred to generically as special care units,

dedicated care units, Alzheimer’s units, or dementia

units. OTA uses the term special care units in this

report.

The number of special care units for individuals

with dementia has increased rapidly over the past

few years. No comprehensive data are available on

the number of special care units before 1987, but

information from several studies indicates that the

great majority of existing special care units were

established after 1983 (181,413,485). The frost

comprehensive data on special care units in this

country were collected in 1987, as part of the

National Medical Expenditure Survey. That survey

found that 1668 nursing homes—8 percent of all

nursing homes—had a special care unit for individuals with dementia in 1987, and that these special care

units accounted for more than 53,000 nursing home

beds (249). The survey also found that an additional

1444 nursing homes planned to establish a special

care unit by 1991, and 535 of the nursing homes that

already had a special care unit in 1987 planned to

expand the unit by 1991. If all these plans had

materialized, more than 3100 nursing homes—14

percent of all nursing homes in the United States—

would have had a special care unit in 1991, and

almost 100,000 nursing home beds would have been

in special care units.

When published in 1990, the figures from the

1987 National Medical Expenditure Survey surprised researchers and others because they were

much higher than any previous estimates. Two

studies conducted since then indicate that the true

number and proportion of nursing homes with a

special care unit are probably somewhat lower

(194,247). On the basis of these studies, OTA

estimates that 10 percent of all U.S. nursing homes

had at least one special care unit in 1991.1 Regardless of the precise figures, however, it is clear that the

number and proportion of nursing homes with a

special care unit are growing rapidly.

The proliferation of special care units creates both

problems and opportunities for individuals with

dementia, their families, and many other people and

organizations that have an interest in the quality and

appropriateness of nursing home care for individuals

with dementia. These other interested parties include: nursing home administrators and staff members who provide care for individuals with dementia

both in and out of special care units; physicians,

nurses, social workers, hospital discharge planners,

community agencies, Alzheimer’s Association chapters, and other voluntary organizations that refer

people with dementia and their families to nursing

homes; and nursing home licensing and certification

officials, nursing home surveyors, and long-term

care ombudsmen who are responsible for regulating

and monitoring the quality of nursing home care.

The problems created by the proliferation of

special care units are due primarily to the lack of

agreement about what a special care unit is or should

be and the related lack of standards to evaluate

special care units. Existing special care units vary

greatly in every respect, including their guiding

philosophy, physical design, staff composition, staffto-resident ratio, activity programs, and patient care

practices (64,181,194,199,232,256,275,332,4 13,485,

494). Despite this variation, the operators of virtually all special care units express confidence that

they are providing appropriate care for their residents. According to researchers who studied the

differences among special care units:

The differences are of such significance that they

appear to place special units in direct opposition to

1 As discussed later in the chapter, tbis number includes nursing homes that place some of their residents with dementia in a physically distinct group

or cluster in a unit that also serves some nondemented residents.

–3–
4 ● Special Care Units for People With Alzheimer’s and Other Dementias

each other. Nevertheless, without exception, their

proponents have hailed the success of the units (332).

Many people have told OTA that some nursing

homes that have a special care unit just use the words

special care as a marketing tool and actually provide

no special services for their residents. Most nursing

homes charge more for care in their special care unit

than in other parts of the facility (413,494). In special

care units that provide no special services, individuals with dementia and their families may pay more

but receive no better care than they would in another

unit in that nursing home or a different nursing

home. At worst, they may pay more and receive

inferior care in the special care unit.

Many families of individuals with dementia are

extremely concerned about the quality and appropriateness of services they may use for these individuals (166,5 13). As a result, they are likely to respond

enthusiastically to claims of “special care. ’ Without standards by which to evaluate special care units,

families and individuals and organizations that refer

patients and their families to nursing homes cannot

know with any certainty whether the units are

providing better care than other nursing home units.

Despite these problems, the proliferation of special care units also creates opportunities for individuals with dementia, their families, and others who

are concerned about the quality and appropriateness

of the nursing home care available to these individuals. Even without standards by which to evaluate the

units, it is obvious to all observers that some special

care units are providing better care for their residents

with dementia than these individuals would receive

inmost nursing homes. One such unit is described in

box l-A.

The proliferation of special care units means that

for the first time in the United States there are

numerous nursing homes in which administrators

and staff members are concentrating on developing

better methods of care for their residents with

dementia. This attention to the special needs of

nursing home residents with dementia reverses the

long-standing reality in many nursing homes in

which the special needs of these residents have not

been recognized and the residents frequently have

not even been identified as individuals with dementia.

This OTA report discusses the complaints and

concerns about the care provided for nursing home

residents with dementia that have led to the development of special care units, the theoretical concepts

that underlie their design and operation, and the

findings of studies that describe and evaluate them.

The report analyzes the problems and opportunities

created by the proliferation of special care units and

discusses the ways in which government has responded or could respond to these problems and

opportunities.

Congressional Requests

This report was requested by Senator David

Pryor, chairman of the Senate Special Committee on

Aging, and Congresswoman Olympia J. Snowe,

ranking minority member of the Subcommittee on

Human Services of the House Select Committee on

Aging. The congressional letters of request for the

report stress the need for information about special

care units to inform Federal policy with respect to

consumer education, research, regulation, and reimbursement for special care units. Congresswoman

Snowe noted the lack of information about the cost

and effectiveness of special care units and stressed

the need for quality standards to help families and

others evaluate the units and assess their options for

nursing home care for an individual with dementia.

Senator Pryor noted the problem of overuse and

misuse of physical restraints in nursing homes and

asked whether restraints are used less often in

special care units and, if so, what alternatives to

restraints are being used.

Policy Context

Nursing home care for individuals with dementia

is an important public policy issue for three reasons.

One reason is that a large number and proportion of

nursing home residents have dementia. The 1985

National Nursing Home Survey, a large-scale survey

of a nationally representative sample of nursing

homes, found that 696,800 nursing home residents—

47 percent of all residents-had dementia (469). The

1985 survey also found that 922,500 nursing home

residents--62 percent of all residents—were so

disoriented or memory-impaired that their performance of the activities of daily living was impaired

nearly every day (467). The 1987 National Medical

Expenditure Survey, which also included a nationally representative sample of nursing homes, found

that 637,600 nursing home residents-42 percent of

all nursing home residents—had dementia (237).

These figures are based on judgments by nursing
Chapter l-Overview and Policy Implications .5

Box 1-A—A Special Care Unit in Lynden, Washington

The Christian Rest Home, a 150-bed nursing home in Lynden, WA has had a special care unit since 1988. The

15-bed special care unit was established because of staff concerns about the safety and well-being of residents with

dementia who wander or have other behavioral symptoms that cannot be handled on the facility’s regular units.

The special care unit consists of resident bedrooms, an activity/dining area, and an enclosed outdoor courtyard.

Three physical changes were made to the building to create the unit: 1) a set of doors was installed in an existing

unit to partition off the resident bedrooms and the activity/dining area; 2) a door was made in an exterior wall to

give the residents access to the enclosed courtyard; and 3) keypad-operated locks were installed on the exit doors;

the doors open when a number code is punched in on the keypad; the doors open automatically if the fire alarm goes

off. These physical changes cost less than $5000.

The special care unit functions as a self-contained entity, but technically it is part of an adjacent unit.

Washington State regulations require each nursing home unit to have a separate nurses’ station, a separate shower,

a separate bathroom for staff, and a separate utility room. To avoid the cost of these separate facilities, the special

care unit is considered part of the adjacent unit. Medications, medical treatments, and rehabilitative services for the

special care unit residents are delivered from the nurses’ station on the adjacent unit.

Some residents of the special care unit have been transferred to the unit from other parts of the nursing home,

usually because they wander or have other behavioral symptoms that are more easily handled on the special care

unit. Other residents have been admitted directly from home. Although all the special care unit residents have

dementia in the opinion of the facility staff, a few have not had a diagnosis of dementia in their medical records,

The objectives of the unit are to assure the residents’ safety, to reduce agitation and behavioral symptoms, to

maintain independent functioning, and to improve the residents’ quality of life. The staff members perceive resident

agitation and behavioral symptoms as meaningful expressions of feelings and unmet needs. They attempt to

understand and respond to those feelings and needs, in the belief that by doing so, they will reduce agitation and

behavioral symptoms and improve the residents’ quality of life.

The unit has a relaxed atmosphere. The residents appear calm and contented. They wander freely around the

unit and respond to and sometimes initiate verbal interactions with staff members and visitors, Although many of

the residents exhibited severe behavioral symptoms before coming to the unit, the unit staff reports that these

symptoms are relatively easily managed in the special care unit.

The only type of physical restraint that is used on the unit is a geriatric chair with a tray table that keeps a

resident from getting up. These ‘geri-chairs’ are used only temporarily and only with a doctor’s order. Psychotropic

medications are used sparingly. They are used in low doses and only after other, behavioral interventions have been

tried. On Jan. 13, 1992,7 of the 15 residents were receiving psychotropic medications, including 4 residents who

were receiving antipsychotic medications.

Formal and informal activity programs are conducted on the unit. Each afternoon there is a formal activity

program, such as a weekly Bible study and music group, a weekly reminiscence group, a weekly “validation”

group, and “high tea”-a Monday afternoon event with real china and lace tablecloths. Other activities, such as

food preparation and singing, take place informally on the unit. One resident who likes to fold laundry is encouraged

to do SO.

Each morning, there is a half-hour hymn sing for all residents of the nursing home. Most of the special care

unit residents are taken to this activity. In the afternoons, a few of the special care unit residents are taken to whatever

activity program is scheduled for the facility as a whole.

Family members are welcome on the unit at any time. The staff knows the residents’ families and involves them

indecisions about the residents’ care. The staff reports that family members often thank them for the help they give

the residents and the emotional support they give the family members. Two formal events-a Thanksgiving potluck

supper and a summer barbecue-involve all the unit residents and their families.

During the day, the staff on the special care unit consists of one registered nurse, who functions as the unit

coordinator, and two muse aides. A licensed practical nurse and two other nurse aides take over for the evening shift.

Since staff consistency is considered important for the unit, the unit staff members generally are not rotated to other

units, although staff rotation is the norm in the rest of the facility. The special care unit staff members work as a

team, with little apparent difference in status between the nurses and aides.

(Continued on next page)
6 ● Special Care Units for People With Alzheimer’s and Other Dementias

Box l-A—A Special Care Unit in Lynden, Washington-(Continued)

Until recently, the unit had no separate staff for the night shift (11:00 p.m. to 7:O0 &m.). Before being admitted

to the special care unit, many of the residents had been awake, agitated, and difficult to manage at night. Once they

came onto the unit, these individuals began to sleep through the night, and the facility found it was possible to leave

the unit doors open and have the unit supervised by a staff member on the adjacent unit. Nevertheless, as of

December 1991, the facility had decided to assign an aide to the unit for the night shift.

The unit administrator and the facility’s staff development coordinator stress the importance of training for the

special care unit staff, but they place greater emphasis on staff attitudes. The unit administrator believes there are

people who cannot be trained to work effectively on the special care unit because their attitudes and personalities

are not suited to the unit. Both the unit administrator and the staff development coordinator stress the need for a

flexible, “trial and error,” approach to dealing with an individual resident’s problems and for staff members who

can implement this approach.

Several individuals besides the unit staff members are involved in the care of the residents. The weekly Bible

study and reminiscence groups are run by staff of the facility’s Therapeutic Recreation Department. The weekly

validation group is run by the director of the facility’s Social Services Department, who is a psychiatric nurse. She

also works with the geriatric mental health team from the local community mental health center to assess and

respond to residents’ mental health needs. A monthly staff meeting is held to discuss problems and ideas among

the special care unit staff and other individuals who are involved in the residents’ care.

Special care unit residents are discharged from the unit when the staff considers that the residents can no longer

benefit from the unit. The unit discharge poilcies are explained to family members when a resident is admitted, but

many family members are upset when their relative is moved to a different unit, Several spouses of former special

care unit residents have created an informal support group that meets almost daily in the facility, presumably to

replace the emotional support they previously received from the unit staff.

Discharges are hard on the unit staff members, since they often become attached to the resident and the

resident’s family. The facility believes, however, that it is important to make space available in the unit for other

individuals who will benefit from it. Priority is given to individuals who are at risk because of wandering.

The Christian Rest Home is a private, nonprofit facility. The specia1 care unit serves both Medicaid and private

pay residents. Until January 1992, there was no additional charge for care in the unit. Starting in January 1992,

private pay residents are charged $10 more per day in the special care unit than they would be charged in other units

in the facility. The special care unit has a waiting list, as does the facility as a whole.

SfXJRC!E: Angie Brouwer, Adtmms ‘ - trator, Christian Rest Home, Lynde~ WA, personal communicatio~ Jan. 13, 1992; Linda Jager, RN, Staff

Development Coordinator, Christian Rest Home, Lynde& WA, personal communications, Oct. 19, 1990, Dec. 30, 1991, Jam 13,

1992; Betty LOU Rau, RN, Day Charge Nurse, Special Care Uni$ Cbristiart Rest Home, Lyndeq WA, personal communications, Oct.

19, 1990, Dec. 30, 1991; Jennifer Johnson, RN, Director of Social Services, Christian Rest Home, Lynde~ WA personal

communications, Oct. 19,1990, Jan 13, 1992.

home staff members about the residents’ mental

status. Several small-scale studies based on comprehensive medical and psychiatric evaluations have

found that an even higher proportion of residents (67

to 78 percent) have clinically diagnosable dementia

(82,389,390).

The second reason nursing home care for individuals with dementia is an important public policy

issue is that government expenditures for nursing

home care for individuals with dementia are substantial. In 1990, total expenditures for nursing home

care from all sources were $53.1 billion. Federal,

State, and local government expenditures accounted

for slightly more than half (52 percent) of that

amount (250).2 Excluding expenditures for the care

of individuals in facilities for the mentally retarded,

total government expenditures for nursing home

care were $22.8 billion. Individuals with dementia

tend to be among those who stay longest in nursing

homes and so are most likely to become eligible for

government reimbursement through Medicaid

(229,258,465). As a result, government probably

pays for more than half of all nursing home care for

individuals with dementia. Since individuals with

dementia constitute at least half of all nursing home

zTotalgov ernment expenditures for nursing home care were $27.7 billion in 1990. This amount included $17.2 billion in Fedeml expemhms ($2.5

billion from Medicare, $13.7 billion ffom Medicaid, and $1.0 billion from other sources, e.g., the Department of Veterans Affairs) and $10.5 billion in

State and local government expenditures, virtually all of which are Medicaid expenditures (250).
Chapter l-Overview and Policy Implications ● 7

residents, OTA estimates that government expenditures for nursing home care for individuals with

dementia amounted to more than $11 billion in

1990.3

The third reason nursing home care for individuals with dementia is an important public policy issue

is that government is extensively involved in regulating nursing homes. The Federal Government

regulates nursing homes that participate in the

Medicare or Medicaid programs. In 1985,75 percent

of all nursing homes participated in one or both

programs, and these participating facilities accounted for 89 percent of all nursing home beds

(467). All States also regulate nursing homes.

Complaints and concerns about the quality and

appropriateness of the nursing home care provided

for individuals with dementia are pervasive. Given

these complaints and concerns and government’s

extensive role in regulating nursing homes and

paying for nursing home care, the claim of special

care unit operators and others that special care units

provide better care for individuals with dementia

deserves the attention of policymakers.

The existence and proliferation of special care

units raise four policy questions. One question

pertains to consumer education. The Alzheimer’s

Association and several other organizations have

developed informational brochures and guidelines

to assist families and others in evaluating special

care units.4 New Hampshire has also taken this

approach (325). The policy question is what, if any,

additional steps government should take to inform

consumers about special care units.

The second policy question pertains to the adequacy of government funding for research on special

care units. Until recently, Federal agencies had

funded very little research on special care units. In

the fall 1991, the National Institute on Aging funded

nine special care unit studies through its “Special

Care Units Initiative,’ and a tenth study was funded

through the initiative in 1992. When the results of

these studies are available in a few years, they will

greatly expand knowledge about special care units.

In the meantime, it is important to consider whether

additional government-funded research is needed,

and if so, on what topics.

The third policy question pertains to regulation of

special care units. As of early 1992, six States—

Colorado, Iowa, Kansas, Tennessee, Texas, and

Washington-had added requirements for special

care units to their general regulations for all nursing

homes. Five States—Nebraska, North Carolina,

New Jersey, Oklahoma, and Oregon-were developing regulations for special care units, and more

States were considering doing so. The policy question is whether the Federal Government or other

States should develop special regulations for special

care units.

Many special care unit operators and others say it

costs more to operate a special care unit than a

nonspecialized nursing home unit (12,64,377,477,485).

Thus, the fourth policy question is whether government should pay more for the care of eligible

individuals in special care units than in other nursing

home units.

Until the publication in 1990 of figures on the

number of nursing homes that had a special care unit

in 1987, most commentators believed there might be

several hundred special care units in the United

States. It was reasonable then to regard special care

units as a relatively small phenomenon and to

consider government policies for special care units

in that context. Recent data suggesting that 10

percent of all nursing homes had a special care unit

in 1991 indicate that special care units are not a small

phenomenon. The rapid proliferation of special care

units means such units are likely to become a much

larger phenomenon. Government policies for special

care units should be considered in this new context

and in relation to the long-range possibilities and

societal objectives for special care units.

Various long-range possibilities for special care

units can be imagined. One possibility would be for

all nursing home residents with dementia to be cared

for in special care units (or in whole nursing homes

devoted exclusively to serving individuals with

dementia). To OTA’s knowledge, no one advocates

this alternative, in part because of the huge number

of individuals involved< 37,600 to 922,500 indiS Some and per~ps my nmsing home residents with dementia are admitted for reasons other than or in addition to their dementia. OTA’S estimate

refers to the overall cost to government of nursing home care for residents with dementia regardless of the primary reason for their admission.

4 See, for exmple, Mace and @@er> “Selecting a Nursing Home With a Dedicated Dementia Care UniG” Akheimer’s Disease and Related

Disorders Association (276).
8 ● Special Care Units for People With Alzheimer’s and Other Dementias

viduals according to national surveys-and the cost

and other implications of creating a whole separate

nursing home industry to serve them.

A second possibility would be for special care

units to serve only certain types of nursing home

residents with dementia—for example, residents

with behavioral symptoms or residents in a particular stage of their dementing illness. To implement

this alternative would require a rationale for determining which types of residents with dementia

should be in special care units and criteria for

identifying these individuals.

A third possibility would be for special care units

to serve: 1) individuals with dementia whose families choose to place them in the unit for any reason,

including ability to pay, and 2) individuals the

nursing home chooses to place in the unit for any

reason, including ability to pay. In this scenario, the

total number of special care units and the number

and types of individuals with dementia who are

cared for in these units would be determined in the

future, as they are now, by market demand and the

decisions of individual nursing home administrators

and staff members.

A fourth possibility would be for special care

units to function as research settings to develop and

evaluate methods of care for individuals with

dementia. Once shown to be effective, the methods

of care developed in special care units could be

incorporated into the care practices of all nursing

homes, thus potentially benefiting all residents with

dementia.

Government policies adopted now with respect to

consumer education, research, regulation, and reimbursement for special care units will influence which

of these long-range possibilities becomes the future

reality. Which of the long-range possibilities is

desirable depends on several factors, the most

important of which are:

●

●

●

the effectiveness of special care units in general

and for particular types of individuals with

dementia;

the relative cost of caring for individuals with

dementia in special care units vs. nonspecialized nursing home units; and

the impact of the different long-range possibilities on nondemented nursing home residents.

By definition, special care units segregate individuals with dementia from other nursing home residents. Some commentators believe this segregation

benefits both demented and nondemented nursing

home residents. Other commentators believe that

although segregation may benefit nondemented

residents, it will result in poorer care for residents

with dementia who will, in effect, be warehoused’

in segregated units. In the view of these commentators, the anticipated negative effects of segregating

nursing home residents with dementia outweigh any

possible positive effects of the units. Some of the

latter commentators are particularly disturbed by the

fact that most special care units are either locked or

“secured” in some other way so that residents with

dementia cannot get out. The reactions of these

commentators to proposed government policies for

special care units are likely to reflect their objections

to locked units rather than to special care units per se.

Finally, in considering government policies for

special care units, it is important to note that the

proliferation of special care units is occurring at the

same time as numerous other government and

nongovernment initiatives that are likely to improve

the care of nursing home residents with dementia or

provide them with alternatives to nursing home care.

These initiatives include the following:

●

●

●

initiatives intended to improve the care of all

nursing home residents, including nursing home

residents with dementia, e.g., the regulatory

and other changes associated with implementation of the nursing home reform provisions of

the Omnibus Budget Reconciliation Act of

1987 (OBRA-87), and separate but related

efforts to create ‘restraint-flee’ nursing homes;

initiatives intended to improve the care of

individuals with dementia in any nursing home

unit, e.g., training programs for nursing home

staff members, special activity and other programs for residents with dementia in nonspecialized units, and the development of effective

strategies for resident assessment, care planning, and treatment of behavioral symptoms;

and

initiatives intended to provide appropriate care

outside nursing homes for individuals with

dementia, e.g., specialized residential care programs inboard and care facilities, group homes,

and assisted living facilities; specialized adult

day programs; and specialized in-home services.
Chapter l-Overview and Policy Implications ● 9

This OTA report focuses on special care units in

nursing homes. A full evaluation of the initiatives

listed above is beyond the scope of the report,

although the implications of OBRA-87 for nursing

home residents with dementia are discussed in this

chapter and at greater length in chapter 5, and some

of the other initiatives are discussed briefly at the

end of this chapter. Ultimately, government policies

for special care units should be considered in the

context of these other initiatives which may provide

alternate or even better ways of accomplishing some

of the same objectives as special care units.

Organization of the Report

The remainder of this chapter summarizes OTA’s

findings with respect to the characteristics of nursing

home residents with dementia and problems in the

care they receive in many nursing homes, the

characteristics of existing special care units, the

available information about their effectiveness, and

the regulatory environment for special care units.

The implications of these findings for government

policies about special care units are discussed. The

chapter also discusses several topics not addressed

elsewhere in the report, including the theoretical

concepts of specialized care for individuals with

dementia and legal and ethical issues related to

special care units.

Chapter 2 discusses the prevalence of dementia in

nursing homes, the characteristics of nursing home

residents with dementia, and the most frequently

cited complaints and concerns about the nursing

home care provided for these individuals. Chapters

3 and 4 analyze the results of the available descriptive and evaluative studies of special care units.

Chapter 5 discusses the government regulations that

apply to special care units, including the special

requirements that are now in effect in six States, and

the guidelines for special care units that have been

developed by various public and private organizations. Chapter 6 analyzes the problem of government

regulations that discourage innovation in the design

and operation of special care units.

NURSING HOMES

AND DEMENTIA

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

number of individuals with Alzheimer’s disease and

other diseases that cause dementia is growing

rapidly. The proportion of individuals with dementia

that is in nursing homes now or will ever be in

nursing homes is not known, but it is likely that most

individuals with dementia will spend some time in

a nursing home in the course of their illness. These

individuals constitute the pool of potential users of

special care units.

This section provides background information

about the clinical syndrome of dementia and its

causes, the prevalence of dementia, and the use of

nursing homes by individuals with dementia. It

describes the characteristics of nursing home residents with dementia and discusses the problems in

the care they receive in many nursing homes and the

impact of those problems on the residents, their

families, nursing home staff members, and nondemented nursing home residents.

The Clinical Syndrome of Dementia

Dementia is a clinical syndrome characterized by

the decline of cognitive abilities in an alert individual. By definition, dementia involves some degree of

memory loss. Other cognitive abilities that are

frequently diminished or lost in dementia include

judgment, learning capacity, reasoning, comprehension, attention, and orientation to time and place and

to oneself. Language functions, including the ability

to express oneself meaningfully and to understand

what others communicate, are usually also affected.

Dementia can be caused by many diseases and

conditions (see app. A). Alzheimer’s disease is the

most common cause of dementia, accounting for 50

to 80 percent or more of all cases (131,227,448). The

second most common cause of dementia is multiple

small strokes that lead to multi-infarct dementia.

Alzheimer’s disease and most other diseases and

conditions that cause dementia are progressive. Over

time, as individuals with these diseases and conditions lose cognitive abilities, they become increasingly unable to care for themselves independently.

Eventually most individuals with dementia require

24-hour supervision and assistance with every

aspect of their daily lives.

The Prevalence of Dementia

OTA estimates that there are now about 1.8

million people with severe dementia in the United

States and an additional 1 to 5 million people with

mild or moderate dementia (458). The results of a

study conducted in East Boston in the early 1980s

suggest that as many as 3.75 million people may
10 ● Special Care Units for People With Alzheimer’s and Other Dementias

have Alzheimer’s disease at all levels of severity

(129), but some researchers and clinicians consider

this estimate high.

The prevalence of dementia increases dramatically with age. OTA estimates 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 (458). It has been

hypothesized that the incidence of new cases of

dementia may level off in individuals over age 85,

but followup data from the East Boston study and

other sources indicate that the incidence of dementia

continues to increase (130,495).

The U.S. population over age 65 is growing faster

than younger age groups, and the 85+ age group is

growing faster than other segments of the older

population. As a result, the number and proportion

of individuals with dementia in the population are

growing rapidly.

Nursing Home Use by Individuals

With Dementia

The proportion of individuals with dementia that

is in a nursing home at any one time is not known.

Nor is it known what proportion of individuals with

dementia will ever be in a nursing home in the course

of their illness.

On the basis of figures from the 1985 National

Nursing Home Survey--i.e., 696,800 nursing home

residents who had senile dementia or chronic or

organic brain syndrome and 922,500 nursing home

residents who were so disoriented or memoryimpaired that their performance of the activities of

daily living was impaired nearly every day—and

OTA’s estimates of the prevalence of dementia

nationwide—i.e., 1.8 million Americans who have

severe dementia, and 1 to 5 million who have mild

or moderate dementia--one could estimate that

anywhere from 10 to 33 percent of individuals with

dementia of any degree of severity are in a nursing

home now. If one surmises that only individuals with

severe dementia are likely to be in a nursing home,

one could estimate that anywhere from 39 to 51

percent of individuals with severe dementia are in a

nursing home now.

A much larger proportion of individuals with

dementia are likely to spend some time in a nursing

home in the course of their illness, although some

individuals with dementia will never be in a nursing

home. Recent projections from data on elderly

individuals who died in 1986 suggest that 43 percent

of all Americans who reached age 65 in 1990 will

spend some time in a nursing home before they die

(230). Individuals with dementia are far more likely

than elderly individuals in general to be admitted to

a nursing home, and it may be that almost all

individuals with dementia will spend some time in

a nursing home in the course of their illness.

The proportion of individuals with dementia that

is in a nursing home at any given time and the

proportion that will be in a nursing home at some

time in the course of their illness could increase or

decrease as a result of several factors. These factors

include the availability of appropriate residential

care in alternate settings, such as board and care

facilities; the availability of appropriate in-home and

community services; and Medicaid eligibility, coverage, and reimbursement policies that encourage or

discourage nursing home placement for individuals

with dementia.

Characteristics of Nursing Home Residents

With Dementia

Available information about the characteristics of

nursing home residents with dementia is presented

in chapter 2. As noted there, nursing home residents

with dementia are older on average than other

nursing home residents. The 1985 National Nursing

Home Survey found that half of the residents with

dementia were over age 85, compared with one-third

of the other residents (469). The survey also found

that three-quarters of the residents with dementia

were female. Although a preponderance of female

residents with dementia is to be expected since

female nursing home residents greatly outnumber

male residents, the survey data indicate that female

nursing home residents were somewhat more likely

than male residents to have dementia (48 percent vs.

40 percent, respectively) (469).

Nursing home residents with dementia are more

likely than other nursing home residents to need

assistance with activities of daily living (i.e., bathing, dressing, using the toilet, transferring from bed

to chair, remaining continent, and eating). The 1985

National Nursing Home Survey found, for example,

that 69 percent of residents with dementia needed

assistance to remain continent, compared with 37

percent of the other residents (469) (see fig. l-l).
Chapter 1--Overview and Policy Implications . 11

Figure I-1—impairments in Activities of Daily Living

in Demented and Nondemented Nursing Home

Residents, United States, 1985

100 9 6 %

80

60

40

20

0

87%’.

74% 70% 69%

5 4 %

Bathing Dressing Using Transferring Continence Eating

the toilet bed to chair

- Demented residents m Nondemented residents

SOURCE: Adapted from U.S. Department of Health and Human Services,

“Mental Illness in Nursing Homes: United States, 1985,” Public

Health Service, National Center for Health Statistics, DHHS

Pub. No. (PHS) 89-1758, Hyattsville, MD, February 1991.

Psychiatric symptoms are more common among

nursing home residents with dementia than among

other nursing home residents. The 1987 National

Medical Expenditure Survey found, for example,

that 36 percent of residents with dementia had

psychiatric symptoms, such as delusions and hallucinations, compared with 26 percent of other residents (464) (see ch. 2).

Behavioral symptoms are also more common

among nursing home residents with dementia than

among other nursing home residents. The 1987

National Medical Expenditure Survey found that 59

percent of residents with dementia had one or more

of ten behavioral symptoms (wandering, physically

hurting others, physically hurting oneself, dressing

inappropriately, crying for long periods, hoarding,

getting upset, not avoiding dangerous things, stealing, and inappropriate sexual behavior) (464). In

contrast, 40 percent of other nursing home residents

had one or more of these symptoms (see fig. 1-2).

Although these data show that nursing home

residents with dementia are more likely than other

nursing home residents to have impairments in

activities of daily living and psychiatric and behavioral symptoms, not all nursing home residents with

dementia have these problems. The survey data

Figure 1-2—Behavioral Symptoms in Demented and

Nondemented Nursing Home Residents, United

States, 1987

59%

60

40-- 37%

20--

6%

2%

0

{

1 or more 1 to 4 5 to 10

behavioral behavioral behavioral

symptoms symptoms symptoms

- Demented residents ~] Nondemented residents

SOURCE: Adapted from U.S. Department of Health and Human Services,

published and unpublished datafromthe 1987 National Medical

Expenditure Survey, Institutional Population Component, Current Residents, Agency for Health Care Policy and Research,

Rockville, MD, 1991.

indicate that 4 to 46 percent of residents with

dementia do not have impairments in activities of

daily living, depending on the activity, and that more

than 40 percent of residents with dementia do not

have behavioral symptoms.

Nursing home residents with dementia also differ

in their coexisting medical conditions and physical

impairments. OTA is not aware of any information

from national studies on the proportion of nursing

home residents with dementia who have coexisting

medical conditions or physical impairments. As

discussed in chapter 2, data on the characteristics of

3427 residents of New York nursing homes show

that residents with dementia vary greatly in this

respect (283). Some are relatively healthy except for

their dementia, and others have numerous diseases

and physical impairments in addition to their dementia.

The diversity of nursing home residents with

dementia has important implications for special care

units. First, it is unlikely any particular type of unit

will be appropriate for all types of nursing home

residents with dementia. Second, with respect to the

long-range possibilities discussed earlier, it is clear
12 ● Special Care Units for People With Alzheimer’s and Other Dementias

that if special care units were designated to serve

only individuals with behavioral symptoms, the

units would not serve all individuals with dementia

who need nursing home care, because more than 40

percent of nursing home residents with dementia do

not have behavioral symptoms.

Problems in the Care Provided for Nursing

Home Residents With Dementia

Many complaints and concerns have been expressed about the quality and appropriateness of the

care provided for nursing home residents with

dementia. These complaints and concerns are the

primary reason for the development and proliferation of special care units. They explain to a great

degree why there is a market for special care units.

They are also the rationale for many of the specific

changes in physical design features, patient care

practices, and staff training that are recommended

for special care units.

Table 1-1 lists the most frequently cited complaints and concerns about the care provided for

nursing home residents with dementia. This list is

based on OTA’s review of numerous articles and

books on nursing home care for individuals with

dementia (see ch. 2). The inclusion of items in the

list does not imply that there is evidence to prove the

items are true but rather that the items are aspects of

what is believed to be wrong with the care provided

for individuals with dementia in many nursing

homes.

Some of the complaints and concerns listed in

table 1-1 apply particularly to residents with dementia, and others apply equally to nondemented residents. To differentiate these two types of problems,

OTA compared the most frequently cited complaints

and concerns about the care of nursing home

residents with dementia, as listed in table 1-1, with

the problems identified by the Institute of Medicine

in its 1986 report, Improving the Quality of Care in

Nursing Homes, which dealt with nursing home care

for all types of residents (318). This comparison,

which is discussed in greater detail in chapter 2,

shows that the complaints and concerns about

nursing home care for residents with dementia focus

more on the physical aspects of nursing homes that

are perceived to be inappropriate for individuals

with dementia (e.g., the lack of cues to help residents

find their way and the lack of appropriate space for

residents to wander) and the lack of staff knowledge

about how to respond to behavioral symptoms. In

contrast, the Institute of Medicine report focuses

more on the lack of sufficient attention to residents’

rights and the lack of choices for residents.

Both the Institute of Medicine’s report and the

literature on nursing home care for individuals with

dementia cite the failure of many nursing homes to

create a home-like environment and their failure to

identify and treat residents’ acute and chronic

diseases and conditions. Both sources also cite the

lack of adequately trained staff in many nursing

homes. The Institute of Medicine’s report focuses on

the lack of training in general, whereas the literature

on nursing home care for individuals with dementia

focuses on the lack of training about dementia and

the care of residents with dementia.

Both the Institute of Medicine’s report and the

literature on nursing home care for individuals with

dementia cite the overuse and inappropriate use of

psychotropic medications and physical restraints.

Although these two problems affect all nursing

home residents to some degree, they are more likely

to affect residents with dementia.

From 35 to 65 percent of all nursing home

residents are prescribed and/or receive at least one

psychotropic medication? and 9 to 26 percent of

residents are prescribed and/or receive more than

one such medication (18,19,52,366,425,429,433,

461). Nursing home residents with dementia are

more likely than other nursing home residents to

receive these medications (19,389,425,429). Often

the medications are used to control behavioral

symptoms in residents with dementia, even though

many of the frequently used medications have not

been demonstrated to be effective for this purpose

(l8,l9,l80,208,277,285,339,381,389,397,406,414,425).

Moreover, some of the most frequently used medications are known to cause confusion, disorientation,

and oversedation in older people and are likely to

worsen the fictional impairments of individuals

with dementia.

From 25 to 59 percent of all nursing home

residents are physically restrained at any one time

(133,446,520). Nursing home residents with dementia are far more likely than other nursing home

residents to be physically restrained (133,389,446).

S Psycho@opic m~ications include antipsychotic, antidepressan~ antianxiety, and se&tive/hypnOtk agents.
Chapter l-Overview and Policy Implications ● 13

Table 1-1—Frequently Cited Complaints and Concerns About the Care Provided for

Nursing Home Residents With Dementia

● Dementia in nursing home residents often is not carefully or accurately diagnosed and sometimes is not

diagnosed at all.

• Acute and chronic illnesses, depression, and sensory impairments that can exacerbate cognitive impairment

in an individual with dementia frequently are not diagnosed or treated.

•There is a pervasive sense of nihilism about nursing home residents with dementia; that is, a general feeling

among nursing home administrators and staff that nothing can be done for these residents.

• Nursing home staff members frequently are not knowledgeable about dementia or effective methods of

caring for residents with dementia. They generally are not aware of effective methods of responding to

behavioral symptoms in residents with dementia.

• Psychotropic medications are used inappropriately for residents with dementia, particularly to control

behavioral symptoms.

• Physical restraints are used inappropriately for residents with dementia, particularly to control behavioral

symptoms.

• The basic needs of residents with dementia, e.g., hunger, thirst, and pain relief, sometimes are not met

because the individuals cannot identify or communicate their needs, and nursing home staff members may

not anticipate the needs.

• The level of stimulation and noise in many nursing homes is confusing for residents with dementia

● Nursing homes generally do not provide activities that are appropriate for residents with dementia

• Nursing homes generally do not provide enough exercise and physical movement to meet the needs of

residents with dementia.

● Nursing homes do not provide enouqh continuity in staff and daily routines to meet the needs of residents

with dementia.

• Nursing home staff members do not have enough time or flexibility to respond to the individual needs of

residents with dementia.

. Nursing home staff members encourage dependency in residents with dementia by performing personal care

functions, such as bathing and dressing, for them instead of allowing and assisting the residents to perform

these functions themselves.

. The physical environment of most nursing homes is too “institutional” and not “home-like” enough for

residents with dementia.

• Most nursing homes do not provide cues to help residents find their way.

• Most nursing homes do not provide appropriate space for residents to wander.

•o Most nursing homes do not make use of design features that could support residents’ independent

functioning.

• The needs of families of residents with dementia are not met in many nursing homes.

SOUR=: ~lce of ‘I&bnolOgy Assessment 1992.

A study of restraint use in 12 Connecticut nursing of bone and muscle mass and other physiological

homes found, for example, that 51 percent of the effects of immobility; increased agitation; aggradisoriented residents were newly restrained over the vated behavioral symptoms, such as screaming,

l-year course of the study, compared with only 17 hitting, and biting; decreased social behavior; loss of

percent of the residents who were not disoriented self-esteem; emotional withdrawal; and injuries and

(446). The potential negative effects of physical death due to improper use of the restraints and

restraint use for both demented and nondemented residents’ attempts to escape from them (30,133,

residents include the following: incontinence; loss 139,182,208,300,305,383,427,446,490,498).
14 ● Special Care Units for People with Alzheimer’s and Other Dementias

Box I-B—The Development of Excess Disability in a Nursing Home Resident With Dementia

One evening an elderly man with dementia who had recently been admitted to a nursing home was picking

up his newspaper at the receptionist’s desk Abruptly, he threatened to hit the receptionist with his cane if she did

not call him a cab, so he could “go to town.’ The receptionist contacted the nurses’ station and kept the man talking

until help arrived. Three staff members responded. They attempted to calm the man verbally, but when these

attempts failed, they snatched the cane and forcefully placed him in a “geri-chair.” He was wheeled to his room,

yelling and kicking. Several visitors and other residents stood by, wide-eyed, watching this scene.

A negative pattern developed with the new resident. He did well during the day with minimal assistance, but

every evening he became very confused, agitated, and disruptive. The nursing home staff met with his family, and

the family agreed to visit him each evening for a few weeks, until he adjusted to the new environment.

Several weeks passed, the agitation and confusion continued, and the family requested sedation, in part because

they were embarrassed about his behavior. An antipsychotic medication was prescribed. Different dosages and

administration times were tried to determine a therapeutic level. Several more weeks passed. The resident became

less disruptive, but he also began to walk unsteadily, drool, and slur his words. He became incontinent, and he could

no longer dress himself.

SOURCE: Adapted from M. Bowsher, “A Unique and Successful Approach to Care for Moderate Stage Alzbeimer’s Victims,” Green Hills

Center, West Liberty, OH, unpublished manuscript no date.

Overuse and inappropriate use of psychotropic functional impairments that are caused by his or her

medications and physical restraints are problems in dementing disease or condition and other functional

themselves. They are also perceived by special care

unit advocates and others as manifestations of other

problems in the nursing home care provided for

individuals with dementia—notably the failure of

many nursing homes to use more appropriate

methods of responding to the individuals’ physical

and emotional needs and behavioral symptoms.

Reduction in the use of psychotropic medications

and physical restraints is a major objective of many

special care units. Evidence cited later in this chapter

and discussed at greater length in chapter 3 indicates

that in general special care units have been successful in reducing the use of physical restraints but that

use of psychotropic medications is as high or higher

in special care units than in nonspecialized units.

Negative Consequences for Nursing Home

Residents With Dementia, Their Families,

Nursing Home Staff Members, and

Nondemented Nursing Home Residents

Problems in the care provided for nursing home

residents with dementia have many negative consequences for the residents. These negative consequences include reduced quality of life, reduced

physical safety, and excess disability. The term

excess disability refers to functional impairment that

is greater than is warranted by an individual’s

disease or condition (47,219). The concept of excess

disability implies that an individual has certain

impairments that are caused by other factors. The

latter impairments constitute excess disability.

Inappropriate or poor-quality nursing home care

can lead to excess disability in cognitive functioning, mood, activities of daily living, and behavior.

Box 1-B illustrates the development of excess

disability in a nursing home resident with dementia.

The immediate cause of excess disability in this case

was a psychotropic medication. Box 1-C later in this

chapter describes an alternate set of staff responses

in the same situation that solved the problem and

avoided the use of psychotropic medications and the

excess disability.

In practice, it is often difficult to distinguish

fictional impairments caused by an individual’s

dementing disease or condition and functional

impairments caused by inappropriate or poor-quality

nursing home care. Many commentators contend,

however, that some and perhaps many of the

functional impairments of nursing home residents

with dementia are due to problems in the care they

receive rather than to their dementing disease or

condition (107,1 15,125,165,171 241,263,359,385,386).

Problems in the nursing home care provided for

individuals with dementia have negative consequences for the residents’ families. Many families of

individuals with dementia feel intensely guilty,

anxious, and sad about having to place the individual

in a nursing home. These feelings may be due
Chapter I-Overview and Policy Implications ● 15

primarily to the patient’s condition and other factors

that have made nursing home placement necessary,

but the feelings are intensified if the family believes

the individual is receiving inappropriate or poorquality care (84,162,263). In addition, the failure of

many nursing homes to facilitate and support

families’ ongoing involvement in their relative’s

care may result in the development of a competitive

or adversarial relationship between the staff and the

family which further increases the family members’

anxiety (45,50,55,167,349,418).

Problems in the care provided for individuals with

dementia also have negative consequences for nursing home staff members. Residents with dementia

are often difficult for staff members to care for

because of their communication deficits, impairments in activities of daily living, and behavioral

symptoms (60,107,167,170,181,191,263,352,359,385).

The difficulty of caring for residents with dementia

is said to cause stress, lowered morale, and burnout

for staff members (191,263,346,352,398). These

reactions may in turn lead to increased absenteeism

and staff turnover. To the extent that residents’

impairments are caused or exacerbated by inappropriate or poor-quality care, the job of staff members

is unnecessarily difficult, and any resulting stress,

absenteeism, and turnover are also attributable to the

inappropriate care.

Lastly, nondemented nursing home residents may

experience negative consequences because of problems in the care provided for residents with dementia. Behavioral symptoms of residents with dementia, e.g., restlessness, screaming, repetitive verbalizations, and combativeness, are upsetting for nondemented residents (46,220,241,263,268,352,373). The

cognitive and fictional impairments of residents

with dementia may also be upsetting for nondemented residents. Experts disagree about the overall

impact on nondemented nursing home residents of

living in close proximity to residents with dementia,

but the two studies OTA is aware of that address this

issue found significant negative effects for the

nondemented residents (438,507). In a study of 72

nondemented nursing home residents, Teresi et al.

found that the nondemented residents who shared a

room or had a room adjacent to a demented resident

were significantly more likely than the other nondemented residents to express dissatisfaction with their

life and their environment and to be perceived as

depressed by staff members (438). They were also

significantly less likely to receive visits or phone

calls from family or friends.

It is unclear whether the negative effects on

nondemented nursing home residents of living in

close proximity to residents with dementia are due

primarily to characteristics of the demented residents that are caused by their dementing illness or to

characteristics that are caused by inappropriate

nursing home care. To the extent that the negative

effects are due to characteristics caused by inappropriate care, the inappropriate care is also responsible

for the reduced quality of life of the nondemented

residents.

Special care units promise to provide better

nursing home care than is currently available for

individuals with dementia. By providing better care,

they expect to benefit residents, residents’ families,

and nursing home staff members. Better care can

only reduce impairments that are not inevitably

caused by the residents’ dementing disease or

condition. Likewise, better care for residents can

only alleviate that portion of family members’

feelings of guilt, anxiety, and sadness that is due to

inappropriate care, not the portion of those feelings

that is caused by the residents’ impairments or

deteriorating condition. Similar considerations apply

to the potential impact of better care on nursing

home staff members. Research findings with respect

to the effect of special care units on residents,

families, and nursing home staff members should be

considered in the context of these inherent limitations on potential positive outcomes.

The situation is different for nondemented nursing home residents. Placing demented residents in

separate units eliminates for nondemented residents

the negative effects of living in close proximity with

demented residents regardless of the factors that

cause the negative effects. Some commentators

believe that placing individuals with dementia in

physically separate units may be justifiable solely on

the grounds that it benefits nondemented residents,

assuming the placements do not harm the demented

residents (221,356).

SPECIAL CARE UNITS

The first special care units in this country were

established in the mid 1960s and early 1970s

(413,485,494). In the mid to late 1970s and the first

half of the 1980s, interest in specialized nursing

home care for individuals with dementia grew
16 ● Special Care Units for People With Alzheimer’s and Other Dementias

rapidly because of increasing general awareness of

Alzheimer’s disease and the special needs of nursing

home residents with dementia (273). In this period,

some nursing homes established special care units.6

Other nursing homes established special activity

programs for their residents with dementia.7

Reports on these early special care units and

programs reflect each facility’s search for workable

approaches in caring for individuals with dementia

(273). The reports are primarily descriptive. Many of

them include case examples that illustrate the

behavioral and other resident problems the unit was

designed to address.

Much of the literature on special care units

consists of descriptive reports of this kind. These

reports generally cite one or more theoretical concepts as the rationale for the physical design features

and patient care practices that have been implemented in a particular unit and make that unit special

in the view of the report authors. Many of the reports

also provide nonquantitative, anecdotal evidence of

the beneficial outcomes of the unit.

Reports on early special care units do not suggest

marketing interests, but some recent reports do

reflect such interests. In the past few years, market

demand has clearly become an important factor in

the establishment of special care units (273).

This section discusses the theoretical concepts of

specialized dementia care that are frequently cited in

the special care unit literature. It briefly describes

several ideas about special care units from other

countries that have influenced the development of

special care units in this country. Lastly, it summarizes the findings from the available descriptive and

evaluative studies of special care units.

Six Theoretical Concepts of Specialized

Dementia Care and Their Implications for

Staff Composition and Training and the

Individualization of Care

Six interrelated concepts pervade the literature on

special care units. The six concepts are discussed at

some length in this report because OTA’s review of

the literature on special care units and discussions

with experts on dementia care indicate that these

concepts constitute the core of what is or should be

special about special care units, more so than any

particular physical design features or other characteristics of the units. Although experts disagree

about particular physical design features and other

special care unit characteristics, there appears to be

considerable agreement about the concepts.

The six theoretical concepts apply to the care of

individuals with dementia generally and are not

limited to special care units or even to nursing home

care. One or more of the concepts are cited in

virtually all articles and books about special care

units, although few sources cite them all. The

concepts are often used to explain and justify the

particular physical design features and patient care

practices used in a given special care unit or

recommended for special care units generally. The

concepts also have important implications for staff

composition and training and the individualization

of care.

1. Something can be done for individuals with

dementia.

This concept argues against the pervasive nihilism that has characterized the care of individuals

with dementia. It posits instead that even though

most of the diseases and conditions that cause

dementia are incurable at present, some aspects of

dementia are treatable, and treatment will improve

the individual’s functioning and quality of life

(91,125,165,268,353,364,371,403). The other five

concepts discussed in this section can be thought of

as ways of operationalizing the first concept. A

corollary to the first concept that is implicit in much

of the special care unit literature but explicitly stated

by only a few commentators is the value judgment

that individuals with dementia have a right to care

that improves their functioning and quality of life

even if the disease or condition that causes their

dementia is irreversible and progressive (33,66,170,

399).

2. Many factors cause excess disability in

individuals with dementia. Identifying and

changing these factors will reduce excess

6For ~xmple, of ~peci~ ~me ~~ ~~~bli~hed ~ ~~ ~eri~d, see Berger (27), Bl~en~ Jewish Home (32), BohgmdBohg(34), Bowsher

(38), Bnce (44), Clarke (87), Goodman (158), Grossman et al. (163), Kromm and Kromm (234), Liebowitz et al. (253), Peppard (345), Wallace (478),

and Wilson and Patterson (505).

T See, for ~wple, H~c~k ~d Ba~ (173), Johnson and Chapman (21 1), McGrowder-Lin and Bhatt (299), Sawer ~d Mendolovi~ (400)s

and Schwab et al. (403).
Chapter l-Overview and Policy Implications ● 17

disability and improve the individuals’

functioning and quality of life.

As discussed earlier, excess disability is fuctional impairment that is greater than is warranted by

an individual’s disease or condition (47,219). Excess disability in individuals with dementia can be

caused by untreated acute or chronic illnesses,

depression, and sensory impairments; overuse or

inappropriate use of psychotropic or other medications or physical restraints; excessive environmental

noise; lack of stimulation and exercise; inappropriate caregiver responses to individuals’ behavioral

symptoms, and other factors. The literature on

special care units contains numerous examples of

situations in which changing a factor that was

causing excess disability resulted in dramatic improvement in an individual’s functioning and quality

of life.

3. Individuals with dementia have residual

strengths. Building on these strengths will

improve their functioning and quality of life.

Although individuals with dementia are usually

described in terms of their impairments, even those

with severe impairments have residual strengths and

abilities (125,328,353,399,519). It has been noted,

for example, that some individuals with dementia

who are no longer able to speak coherently can still

sing, and some can remember the words to old songs

(295,487,491). By building on this strength, music

programs and music therapy are intended to improve

these individuals’ quality of life and allow them to

interact on some level with other people.

Another example of the implementation of this

concept is the use of familiar activities. Many

individuals with dementia remember how to do tasks

they did earlier in their lives. Activities such as

cooking and laundry-folding for women and woodworking for men are intended to build on these

remaining abilities and give the individuals a feeling

of competence (108,518).

4. The behavior of individuals with dementia

represents understandable feelings and needs,

even if the individuals are unable to express

the feelings or needs. Identifying and

responding to those feelings and needs will

reduce the incidence of behavioral symptoms.

The behavior of individuals with dementia is

frequently regarded as an inevitable and essentially

meaningless consequence of their dementing disease or condition, and little effort is made to

understand or explain it. In contrast, experts in

dementia care point out that the behavior of individuals with dementia often expresses meaningful

feelings, intentions, and needs (60,125,273,287,353,

361,385,403,408,482,517). They contend that if

nursing home staff members and other caregivers

can figure out the meaning of the individuals’

behavior and respond to that meaning, the caregivers

may be able to prevent or resolve behavioral

symptoms without resorting to psychotropic medications or physical restraints. Box 1-C describes the

same elderly man with dementia who is described in

box 1-B and illustrates the way in which interventions based on an understanding of the meaning of an

individual’s behavior may prevent the development

of behavioral symptoms and avoid the use of

psychotropic medications and physical restraints.

The special care unit literature contains many

similar accounts.

The first efforts to explain specific behavioral

symptoms in individuals with dementia focused on

wandering. Beginning in the 1970s, several researchers have studied wandering behavior and

concluded that although the behavior often seems

meaningless on the surface, it actually represents a

variety of meaningful intentions and needs for

different individuals (e.g., a search for someone or

something, a search for security, a wish to go home,

or a lifelong coping style) (106,306,361,417). Based

on this conclusion, a number of innovative and

reportedly effective methods of responding to wandering behavior have been developed.

Two books-Care of Alzheimer’s Patients: A

Manual for Nursing Home Staff (165) and Understanding Difficult Behaviors (385)-discuss the

many possible reasons for behavioral symptoms and

suggest ways of responding to the problems based

on these reasons. Both books recommend and

exemplify a flexible, problem-solving approach to

behavioral symptoms. Other commentators have

also noted that responding effectively to the behavioral symptoms of individuals with dementia often

involves a flexible, trial and error approach (353,

399,516).

Rader refers to wandering and other behaviors of

individuals with dementia as agenda behavior; that

is, behavior by which a person with dementia

attempts to meet his or her own agenda (359,361).

She urges caregivers of individuals with dementia to
18 ● Special Care Units for People with Alzheimer’s and Other Dementias

Box 1-C—The Use of Behavioral Interventions With a Nursing Home Resident With Dementia

One evening an elderly man with dementia who had recently been admitted to a nursing home was picking

up his newspaper at the receptionist’s desk. Abruptly, he threatened to hit the receptionist with his cane if she did

not call him a cab, so he could “go to town, ’ The receptionist stood up, looked directly at the resident and said in

a respectful, matter-of-fact tone, “I see something is bothering you.’ The resident answered in a low, harsh voice,

“I should be working, not being lazy.” The receptionist asked him about his work and listened intently as he talked

about the work he used to do.

A pattern developed with the new resident. He did well during the day with minimal assistance, but every

evening he became very confused and agitated. A nurse aide was assigned to take a walk with him at these times.

As they walked together around the facility, they often talked about the past and the resident’s busy professional

life. Sometimes they just walked. When the resident showed sorrow, the nurse aide shared the sorrow with him by

active listening and gently touching him on the arm.

Several weeks passed, The resident became less agitated and more content to wander around the unit,

sometimes stopping to take imaginary measurements of a doorway or a piece of furniture. The intervention of the

familiar nurse aide prevented the development of a behavioral problem that might have led to the use of psychotropic

medications or physical restraints.

SOURCE: Adapted from M. Bowsher, “A Unique and Successful Approach to Care for Moderate Stage Alzheimer’s Victims,” Green Hills

Center, West Liberty, OH, unpublished manuscrip~ no date.

try to understand the agenda that underlies the

individual’s behavior and to allow the individual to

play out that agenda as much as possible, rather than

superimposing the caregiver’s own agenda.

On the basis of the concept that the behavior of

individuals with dementia represents understandable feelings and needs, Feil and others advocate the

use of validation therapy (120,136,407). Validation

therapy involves understanding and validating the

personal meaning of an individual’s behavior. It is

an alternative to reality orientation, a therapy

method which requires the caregiver to consistently

reorient the confused person to current reality. Many

commentators contend that reality orientation is

frustrating and usually ineffective for individuals

with dementia, except perhaps early in the course of

their dementing disease or condition (120,170,273,

359,361, 436,483).

5. Many aspects of the physical and social

environment affect the functioning of

individuals with dementia. Providing

appropriate environments will improve their

functioning and quality of life.

The relationship between the environment and the

functioning of older people has been the topic of

empirical research and theory-building in environmental psychology for 30 years (183,242). It is now

generally accepted that the interaction between an

older person’s environment and the person’s characteristics can affect his or her functioning, either

positively or negatively. According to Lawton:

The quality of the outcome of a personenvironment transaction is a function of the degree

of environmental demand or press. . and the competence of the person. When the degree of demand is

matched to the person’s competence, a positive

outcome in terms of affective response or adaptive

behavior is the rule. When press is high in relation to

competence, psychological disturbance in the form

of strain is likely to occur. When press is low in

relation to competence, sensory deprivation and

atrophy of skills are likely (243).

In this theory, the terms environmental demand

and environmental press refer to the motivating or

activating quality for a particular individual of the

physical and other aspects of that individual’s

environment (242). The term person-environment fit

denotes the degree of congruence between environmental demand or environmental press and the needs

and characteristics of an individual. The theory

proposes that person-environment fit can be improved by changing the environment (218,242).

The theory also proposes that the impact of the

environment is greater for individuals with low

competence, including individuals with dementia,

than for other people. According to Lawton:

As individual competence decreases, the environment assumes increasing importance in determining

well-being. One corollary of this hypothesis is that
Chapter l-Overview and Policy Implications ● 19

the low-competent are increasingly sensitive to

noxious environments. The opposite and more

positive corollary is that a small environmental

improvement may produce a disproportionate amount

of improvement in affect or behavior in the lowcompetent individual (241).

The concept that appropriate environments will

improve the functioning and quality of life of

individuals with dementia appears frequently in the

special care unit literature. In the context of the

theory, the term environment includes all aspects of

a person’s surroundings, but the concept is cited

most often in connection with physical aspects of the

units. Many articles and books that discuss the

design of special care units identify one or more

impairments or needs of individuals with dementia

and propose physical design features to compensate

for or respond to the impairments or needs. Two

books exemplify this approach: Designing for Dementia: Planning Environments for the Elderly and

Confused (67) and Holding Onto Home: Designing

Environments for People With Dementia (93).

Physical design features are seen as potentially

compensating for or responding to the impairments

and needs of individuals with dementia in the

following general ways:

. by assuring safety and security;

. by supporting functional abilities;

. by assisting with way-finding and orientation;

. by prompting memory;

. by establishing links with the familiar, healthy

past;

. by conveying expectations and eliciting and

reinforcing appropriate behavior;

. by reducing agitation;

● by facilitating privacy;

. by facilitating social interactions;

. by stimulating interest and curiosity;

. by supporting independence, autonomy, and

control; and

. by facilitating the involvement of families

(62,67,93,184).

Many different physical design features are justified on the basis of the concept that appropriate

environments will improve the functioning and

quality of life of individuals with dementia. These

design features range from the overall shape and

floor plan of the unit (see fig. 1-3) to the use of

environmental cues, such as color coding of rooms

and corridors to help residents find their way, and

personal markers, such as residents’ pictures placed

near their rooms to help them identify the rooms.

Physical design features are often referred in the

special care unit literature as prosthetic because they

are intended to compensate for, rather than cure,

impairments that are believed to be unchangeable.

Since the impairments are unchangeable, it is

assumed the prosthetic features will be needed

permanently. Physical design features that compensate for functional impairments are said to be cost

effective because the design features act continuously and may substitute for more costly staff

interventions (185,243).

Sometimes very strong claims are made about

particular physical design features for special care

units, as if there were proof of the effectiveness or

lack of effectiveness of the features. Numerous

articles state with certainty, for example, that floor

patterns with dark areas or dark borders should not

be used in special care units because individuals

with dementia will perceive the dark areas as holes

and be afraid to walk on or over them. Likewise it is

often said that certain types of art work, wallpaper,

and carpet patterns cause delusions and hallucinations in nursing home residents with dementia. To

OTA’s knowledge, there is no research-based evidence for these claims.

OTA has heard particular physical design features

justified on the basis of claims, such as that

individuals with dementia may mistake a light

reflected from a shiny floor as a blob that is chasing

them, that they feel threatened by the person in the

mirror who does not respond to their greeting, that

they sometimes mistake their shadows for pools of

water and try to jump over, that they try to pick the

flowers in floral-print wallpaper, etc. One suspects

that these claims arise from anecdotes about individual residents or someone’s guess about the response

of individuals with dementia to a particular design

feature and that the anecdotes and guesses are then

generalized to all residents with dementia.

In reality, very little research has been done to test

the impact of particular physical design features on

individuals with dementia. Moreover, the conclusions of several of the existing studies are contradictory. Some of these studies are described in chapter

4. Unfortunately, some nursing homes incorporate

physical design features for which strong claims are

made and believe they have thereby created an

appropriate environment for their residents with
John Douglas French Center, Los Angeles, CA

The building is structured in a “butterfly” shape with 4 units maintaining

rooms for “families” of 12-13 residents located around a shared nurses’

station. Each family unit includes a mix of private and semi-private rooms.

There is direct access to a secure courtyard.

I

J 1

-

d

Weiss Institute, Philadelphia Geriatric Center, Philadelphia, PA

The unit is comprised of a large central space, around which residents’

rooms are located. The open plan of the 40-bed unit allows staff easy visual

access to all residents and provides a continuous path for wanderers. The

unit has a therapeutic kitchen for residents.

Figure 1-3—Alternate Shapes and Floor Plans for Special Care Units

Corinne DoIan Alzheimer’s Center, Heather Hill, Chardon,OH

The building is comprised of 2 triangular units with a shared support

and bathing core. The open plan of each 12-bed unit allows staff easy visual

access to all residents, and provides a continuous path for wanderers. Each

unit has a fully equipped residential-style kitchen. There is direct access to a

secure courtyard, as well as to several paved paths beyond the yard for

residents and visitors.

n

Friendship House, West Bend, IN

The building is comprised of 2 units with 4 “households” each. A nurses’

station, elevator and services are located at the center of each unit of

4 households. A protected outdoor courtyard is defined by the two units.

SOURCE: M.P. Calkins, Design for Dementia: Planning Environments for the Ekfetfyand Confused, 1988; U. Cohen and G.D. Weisman, Holding On To Home, 1991; U. Cohen and G.D. Weisman,

Environments for People Wth Dementia: Case Studies, 1988.
Chapter l-Overview and Policy Implications ● 21

dementia, when, in fact, no evidence exists that the

specifc features are effective. Lawton has noted

that:

There is a strong tendency for intuitive, a priori

reasoning about what is “good” for Alzheimer

patients to become accepted as fact. . .The hunger for

information is so great among practitioners that

almost any unsupported assertion can be rapidly

accepted (244).

As noted earlier, the concept that appropriate

environments will improve the functioning and

quality of life of individuals with dementia is cited

most often in connection with physical design

features for special care units, but it is sometimes

also cited in connection with other unit characteristics, such as activity programs and daily routine.

Activity programs and the daily routine on the unit

are perceived as potentially compensating for the

impairments of residents with dementia in many

ways, e.g., by supporting functional abilities, prompting memory, conveying expectations, eliciting and

reinforcing appropriate behavior, facilitating social

interactions, and stimulating interest and curiosity

(358,392,519).

Coons has gone farthest in developing a model of

specialized dementia care, referred to as a therapeutic milieu, in which all aspects of the physical and

social environment and the daily routine on the unit

are designed to be therapeutic (104,105,109).8 This

model was demonstrated for several years at Wesley

Hall, a special care unit in a retirement facility in

Chelsea, MI.

A different model of care, referred to as a low

stimulus unit, has been developed by Hall and her

colleagues (170,171). This model is based on the

concept that appropriate environments will improve

the functioning and quality of life of individuals with

dementia and the perception of these clinicians that

individuals with dementia have a “progressively

lowered threshold for stress” due to their reduced

ability to receive and process external stimuli. Hall

and others believe that in traditional nursing home

units, residents with dementia are overwhelmed by

multiple environmental stimuli, including noise

from telephones, televisions, radios, Muzak, and

paging systems; high-glare floors; hurrying staff;

visitors; other residents; and large group activities.

They believe that in response to these stimuli, the

residents become increasingly agitated, confused,

and sometimes combative. To compensate for the

residents’ lowered threshold for stress, Hall and her

colleagues propose units in which environmental

stimuli are reduced: no telephones ring on the unit;

television, radio, Muzak, and paging are eliminated;

staff and visitor traffic through the unit is reduced;

dining and activities take place in small groups; and

resting is encouraged by environmental cues, such as

comfortable chairs in the hallways. Many low

stimulus units have been established on the basis of

this model (169,209,334). While agreeing with some

aspects of the low stimulus model, other clinicians

and researchers contend that the main problem is not

excessive stimuli, but insufficient stimuli of appropriate types. They argue that an increase in selected

stimuli will improve the functioning and quality of

life of individuals with dementia (107,183,243,

259,272). The ideal level and type of stimuli are

unclear, however (96,185,244,287).

Like the other five concepts discussed in this

section, the concept that appropriate environments

will improve the functioning and quality of life of

individuals with dementia is theoretical. It is interpreted differently by different individuals and is

used to justify a great variety of physical design

features and other unit characteristics. Disagreements among experts about the right characteristics

for a special care unit make it difficult for nursing

home administrators and others to design a special

care unit. These disagreements do not, however,

invalidate the underlying concept. Instead, they

point out the need for research to test the effectiveness of the recommended characteristics.

6. Individuals with dementia and their families

constitute an integral unit. Addressing the

needs of the families and involving them in the

individuals’ care will benefit both the

individuals and the families.

Families of individuals with dementia are often

said to be the second victim of the dementia. They

are generally perceived by experts in dementia care

as part of the client unit. As a result, meeting their

needs becomes a legitimate objective of specialized

dementia care.

Families can also assist in various ways in the care

of nursing home residents with dementia. They are

a source of valuable information about the residents,

g me Con=pt of therapeutic m-lieu was f~st used in the treatment of mentally ill persons in psychiatric hospitis (215).
22 ● Special Care Units for People with Alzheimer’s and Other Dementias

who often cannot provide accurate information

about themselves. As Hegeman and Tobin have

noted, families can ‘‘help to preserve the unique

identity of residents and help the staff and the

resident be aware of that identity” (178). Families

can also provide physical assistance, emotional

support, and advocacy. Their presence helps to make

any setting more home-like and familiar for the

resident (174,296,358,418).

Meeting the needs of families of nursing home

residents with dementia means providing them with

information, emotional support, and a structure that

facilitates their involvement in the residents’ care.

Families are perceived to benefit from information

about dementia and ways of communicating with a

person with dementia, as well as from support

groups, counseling, and other forms of emotional

support (55,128,168,296,358,41 8,5 16).

To facilitate the involvement of families in the

residents’ care, it is necessary to provide both a

welcoming atmosphere and administrative and caregiving practices that recognize the families’ legitimate role in the residents’ care. Families can be

involved, for example, in care planning conferences

and other situations in which decisions are being

made about the residents’ care. They may also be

encouraged to act as volunteers on the unit (46,55,

125,168,174,418).

By providing information, emotional support, and

a structure that facilitates the involvement of families, it may be possible to lessen their feelings of

anxiety and guilt and avoid the development of a

competitive or adversarial relationship between the

staff and the families. Families differ, however, and

the best ways of providing information and support

and involving families also differ (128,168,358).

Implications for Staff Composition and Training

The six concepts discussed above have important

implications for staff composition and training. With

respect to staff composition, the concepts indicate

the need for a multidisciplinary approach to care. To

identify and change the factors that cause excess

disability requires the involvement of health care

professionals capable of diagnosing and treating the

causes of excess disability, e.g., acute and chronic

illnesses, depression, and sensory impairments.

Likewise, to provide activity programs that build on

residents’ residual strengths, support functional

abilities, and facilitate social interactions requires

the involvement of individuals who are skilled in

various therapeutic recreation specialties. Although

these health care professionals and other therapists

do not necessarily have to be part of the unit

staff-and to make them part of the staff may be

prohibitively expensive-some means of involving

them in the residents’ ongoing care is essential for

effective implementation of the concepts.

With respect to staff training, the concepts require

a change for all staff members in widely held

nihilistic attitudes about nursing home residents

with dementia. In addition, since the concepts do not

provide precise formulas for care, staff members

must not only understand the concepts but also be

able to interpret and apply them in caregiving

situations. In most special care units, as in nursing

homes generally, nurse aides provide most of the

daily care. These aides must be able to interpret and

apply the concepts—sometimes in difficult, emotionally-charged situations. To do so requires knowledge, problem-solving skills, and judgment. Special

care units that adopt the concept of therapeutic

milieu often regard housekeepers and other nonprofessional staff members as part of the care team. These

individuals also must understand the concepts and

be able to apply them.

Implications for the Individualization of Care

Three of the six concepts clearly emphasize the

individualization of care. They require the staff

members to: 1) identify and change the factors that

cause excess disability in individual residents; 2)

identify and build on the residual strengths of

individual residents; and 3) identify and respond to

the feelings arid needs expressed in the behavior of

individual residents. As noted earlier, nursing home

residents with dementia are diverse, and their

characteristics and needs change over time. The

three concepts that emphasize the individualization

of care fit well, at least in theory, with this diversity.

The concept that appropriate environments will

improve the functioning and quality of life of

individuals with dementia may also fit well in theory

with the diverse and changing needs of nursing

home residents with dementia. In practice, however,

the concept is probably more difficult to apply, since

special care units must be designed and built for

groups of individuals. The objectives in special care

unit design include flexibility and the capacity to

adapt to resident change (10,67,287,296,358). Nevertheless, given the extreme diversity of nursing
Chapter I-Overview and Policy Implications ● 23

home residents with dementia, it would seem that

the more closely the physical environment of a

special care unit matches the needs of one individual

or one type of individual with dementia, the less

likely the unit would provide the best environment

for other types of individuals with dementia. The

same concern may apply to other features of special

care units, such as activity programs.

This concern has led a few nursing homes to

establish several special care units that provide

different levels and types of care intended to match

the characteristics and needs of residents in different

stages of their illness (34,473). A second alternative,

adopted by some nursing homes with only one

special care unit, is to discharge residents from the

unit-usually to a nonspecialized unit in the same

facility-when the level and type of care provided in

the special care unit no longer matches the residents’

characteristics and needs. Both these alternatives

require moving residents, which is likely to increase

their confusion. Moving residents also may have

negative consequences for the residents’ families

who are often emotionally attached to the unit staff

members and for the unit staff members who are

often attached to the residents and their families

(40,375,473).

A third alternative is to allow special care unit

residents to age in place, that is, to remain on the unit

until they die. Anecdotal evidence suggests that

some special care units that adopt this policy

become, in effect, terminal care settings as most of

the residents progress into the later stages of their

illness (40,419). This creates problems for new

residents who are admitted to a unit in which most

of the other residents are severely cognitively and

physically impaired. OTA is not aware of any

research that compares these three alternatives, and

the special care unit literature contains little discussion of this important issue.

Ideas About Special Care Units

From Other Countries

Special care units for people with dementia exist

in many other countries. Information about these

units reaches the United States primarily through

reports from foreign visitors who are knowledgeable

about the special care units in their own countries

and through reports of Americans who have visited

the units in other countries. There are a few

descriptive studies on special care units in particular

countries,9 but most of the available information is

anecdotal. OTA is not aware of any formal research

comparing special care units in different countries.

Information about special care units in other

countries influences thinking about special care

units in the United States in several ways. First,

special care units in other countries demonstrate

alternate models of care. For example, a primary

objective of special care units in some countries is to

provide a comfortable, home-like environment for

their residents. These units have few rules and

maintain a flexible daily schedule that is responsive

to the habits and preferences of individual residents.

In visiting these units, American observers have

been impressed with their relaxed atmosphere and

the apparent contentment of the residents (273).

Reports on special care units of this kind in other

countries create an incentive for the establishment of

similar units in this country.

Physical restraints are used less frequently or not

at all in special care units in some other countries

(273,498). The knowledge that restraints are less

often used in other countries has been one incentive

for reducing their use in the United States.

Special care units in some other countries are

more able to innovate than special care units in the

United States (273). Awareness of this difference

calls attention to the factors that encourage or

constrain innovation in different countries. One such

factor is nursing home regulations. As discussed in

chapter 6, nursing home regulations in the United

States sometimes interfere with the implementation

of innovative physical design and other features in

special care units. Nursing homes are less tightly

regulated in most other countries and are therefore

more able to innovate. Public programs in many

other countries also make a less rigid distinction than

public programs in the United States between health

care and social services, and the same public

programs are more likely to pay for both types of

services in other countries. As a result, there are

fewer artificial barriers to the development of special

care units that provide a mix of medical and social

services. Lastly, public funding is more likely to be

available for nonmedical residential care in other

countries than in the United States. When the same

9 see, for ex~ple, No- Severe Dementia: The Provision of Longstay care (330).
24 ● Special Care Units for People With Alzheimer’s and Other Dementias

public programs pay for both medical and social

services and public funding is available for nonmedical residential care, there is a strong financial

incentive for government agencies to support the

development of nonmedical residential care models

that are less costly than nursing homes. Since 1986,

for example, the Australian government has provided grants to stimulate the development of special

care units in hostels as an alternative to nursing

homes for individuals with dementia (101).

Despite these advantages in other countries, no

country has the answers with respect to special care

units or problems in the care of nursing home

residents with dementia (273). Questions about the

effectiveness of various models and components of

care are pervasive. Clinicians and researchers from

other countries frequently come to the United States

in search of ideas about physical design features and

patient care practices for special care units. Adequately trained staff and sufficient funding are in

short supply everywhere.

Findings From Research on

Special Care Units

Research on special care units is in an early stage,

but some descriptive and evaluative studies have

been conducted in the past few years. OTA’s

conclusions from the available descriptive studies

are listed in table 1-2. The findings from these

studies are discussed in detail in chapter 3, and some

of the most important findings for policy purposes

are reviewed in this section. The findings from the

available evaluative studies are discussed in detail in

chapter 4 and reviewed briefly in this section.

Number of Nursing Homes That Have a Special

Care Unit

OTA estimates that in 1991, 10 percent of U.S.

nursing homes had a special care unit. This number

includes nursing homes that group some of their

residents with dementia in physically distinct clusters in units that also serve some nondemented

residents.

As noted earlier, OTA’s estimate is based on the

findings of two recent studies. One of the studies-a

1991 survey of all U.S. nursing homes with more

than 30 beds—found that 9 percent of the nursing

homes reported having either a special care unit or

a special program for residents with dementia in a

physically distinct part of the facility (246). The

second study-a 1990 survey of all nursing homes

in five northeastern States—found that seven percent of the nursing homes reported having a special

care unit, and an additional five percent reported that

although they did not have a special care unit, they

did place some of their residents with dementia in

physically distinct groups or clusters in units that

also served some nondemented residents (194).

Thus, a total of 12 percent of the nursing homes

reported using some method to physically group

residents with dementia--either in a special care

unit or a cluster unit.

The lack of an accepted definition of the term

special care unit makes it difficult to develop

accurate figures on the number and proportion of

nursing homes that have a special care unit. The

figures cited above are based on self-report. The

figures from the 1991 survey generally reflect the

opinion of each nursing home administrator or other

survey respondent about what a special care unit is.

According to the researchers who conducted the

1990 survey, however, some nursing homes that

place residents with dementia in a physically separate unit and provide special services in the unit do

not use the term ‘‘special care’ for these arrangements and therefore may not respond affirmatively

to a survey question about whether they have a

special care unit (436). Surprisingly, the researchers

also found that in some nursing homes, the administrator and the director of nursing disagreed about

whether the facility had a special care unit (194).

Some people believe the term special care unit

should mean more than just a physically separate

space and the nursing home’s claim that it provides

‘‘special care. Depending on the additional criteria

that are used, some and perhaps many of the nursing

homes included in the figures just cited might not be

counted as having a special care unit.

To OTA’s knowledge, the 1990 survey of all

nursing homes in five northeastern States was the

first to identify large numbers of nursing homes with

cluster units. It is unclear whether cluster units

should be counted as special care units. Many of the

cluster units identified in the 1990 survey incorporated features that are recommended for special care

units (e.g., physical design features, special staff

training, and family support groups), although

cluster units were less likely than special care units

to incorporate these features (194).
Chapter l-Overview and Policy Implications ● 25

Table 1-2-Conclusions From Descriptive Studies of Special Care Units

Number of Nursing Homes That Have a Special Care Unit

• OTA estimates that in 1991, 10 percent of all nursing homes in the United States had a special care

unit. In at least some States, this figure includes nursing homes that place some of their residents with

dementia in “clusters” in units that also serve nondemented residents.

• The proportion of nursing homes that have a special care unit varies in different parts of the country

and in different States,

• Many nursing homes that do not have a special care unit are planning to establish one, and some

nursing homes that have a special care unit are planning to expand the unit.

Characteristics of Nursing Homes That Have a Special Care Unit

● Larger nursing homes are more likely than smaller nursing homes to have a special care unit.

• As of late 1987, most nursing homes that had a special care unit were private, for-profit facilities. At

that time, multi-facility nursing home corporations owned about one-third of all the facilities that had

a special care unit. There is no evidence, however, that ownership of special care units is dominated

by a small number of multi-facility nursing home corporations.

Characteristics of Special Care Units

● Special care units are extremely diverse.

• Most special care units have been established since 1983, although a few have been in operation for

20 to 25 years.

• The goals of special care units differ. For some units, the primary goal is to maintain residents’ ability

to perform activities of daily living. Other units focus on maintaining residents’ quality of life,

eliminating behavioral symptoms, or meeting residents’ physical needs,

. Most existing special care units were not originally constructed as special care units, and at least

one-fifth were neither originally constructed nor remodeled for this purpose.

• The use of specific physical design and other environmental features varies in existing special care

units. Many of the physical design and other environmental features cited as important in the special

care unit literature are used in only a small proportion of special care units.

• The most extensively used environmental feature in special care units is an alarm or locking system,

found in more than three-fourths of existing units.

• On average, special care units probably have fewer residents than nonspecialized nursing home units.

• On average, special care units probably have more staff per resident than nonspecialized nursing home

units.

• Although the majority of existing special care units provide special training for the unit staff, at least

one-fourth of existing units do not.

• Less than half of existing special care units provide a support group for unit staff members.

● The types of activity programs provided by special care units vary greatly, but existing special care

units are probably no more likely than nonspecialized units to provide activity programs for their

residents.

* About half of existing special care units provide a support group for residents’ families.

● Special care unit residents areas likely or more likely than other nursing home residents with dementia

to receive psychotropic medications.

• Special care unit residents we probably less likely than other nursing home residents with dementia

to receive medications of all types.

(Continued on next page)
26 ● Special Care Units for People With Alzheimer’s and Other Dementias

Table l-2-Conclusions From Descriptive Studies of Special Care Units-(Continued)

● Special care unit residents are less likely than other nursing home residents with dementia to be

physically restrained.

o Special care units vary greatly in their admission and discharge policies and practices. About half of

all special care units admit residents with the intention that the residents will remain on the unit until

they die.

● The cost of special care units varies depending on the cost of new construction or remodeling, if any,

and ongoing operating costs. On average, existing special care units probably cost more to operate than

nonspecialized nursing home units, primarily because of the higher average staffing levels on special

care units.

• Special care units generally have a higher proportion of private-pay residents than nonspecialized

nursing home units, and the private-pay residents are often charged more for their care in the special

care unit than they would be in a nonspecialized unit.

Characteristics of Special Care Unit Residents

• Special care unit residents are younger than other nursing home residents, and they are more likely

than other nursing home residents to be male and white.

● Special care unit residents are more likely than other nursing home residents to have a specific

diagnosis for their dementing illness.

• Special care unit residents are probably somewhat more cognitively impaired and somewhat less

physically and functionally impaired than other nursing home residents with dementia

● Special care unit residents are probably somewhat more likely than other nursing home residents with

dementia to participate in activity programs.

* Special care unit residents are more likely than other nursing home residents with dementia to fall.

SOulmr!: CM%ce of ‘lk@nology Assessment, 1992.

In this context, it is interesting to note that the Because of this diversity, no single descriptive

special care unit described in box 1-A at the statement is true of all special care units.

beginning of this chapter is technically not a separate

unit, because it does not have a nurses’ station and

other features the State requires for a nursing home

unit. That unit is viewed by the facility’s administrators as a separate entity. A similar arrangement in

another nursing home might be viewed by its

administrators as a clustering of residents with

dementia in one section of a larger unit that also

serves nondemented residents, and they might report

it as such on a survey questionnaire.

Characteristics of Special Care Units and Special

Care Unit Residents

All studies of special care units show that existing

units are extremely diverse. They vary in their goals,

physical design features, staff-to-resident ratios,

staff training programs, provision of staff and family

support groups, activity programs, use of psychotropic medications and physical restraints, and

admission and discharge policies and practices.

On average, special care units probably have

fewer residents and more staff per resident than

nonspecialized nursing home units (291). Staff-toresident ratios vary greatly among units, however.

Most special care units provide special training

for their staff, but at least one-fourth of existing units

do not provide special training. In response to the

1987 National Medical Expenditure Survey, 26

percent of the nursing homes with a special care unit

reported they did not provide special training for the

unit staff (248). Likewise, in response to the 1990

survey of all nursing homes in 5 northeastern States,

30 percent of the facilities with a special care unit

and 47 percent of the facilities with a cluster unit

reported they did not provide special training for the

unit staff (194). Given the emphasis on staff training

in the special care unit literature, the finding that

more than one-fourth of existing units do not provide

special training is surprising. The finding is proba-
Chapter l--Overview and Policy Implications ● 27

bly correct, however, since nursing homes are

unlikely to underreport the provision of staff training.

The most widely used physical design feature in

special care units is an alarm or locking system,

found in more than three-fourths of existing units

(181,194,247). Although numerous physical design

features have been recommended for special care

units, most of the recommended features are used in

only a small proportion of existing units (194,485,494).

Some special care units have formal (written)

admission and discharge policies, but most probably

do not (194). In response to the 1990 study of all

nursing homes in five northeastern States, threefourths of the facilities with a special care unit

reported using each of three criteria to select their

residents: 1) the degree of the individual’s dementia;

2) the individual’s need for supervision; and 3) the

individual’s behavioral symptoms (194). Most of the

facilities reported that they seek individuals with

more rather than less severe behavioral symptoms,

but 15 percent reported that they seek individuals

with less severe behavioral symptoms for their unit.

One-third reported that the individuals they admit

must be able to ambulate independently.

Reported admission practices may or may not

reflect actual admission practices in special care

units. Findings from the Multi-State Nursing Home

Case-Mix and Quality Demonstration-a 5-year

congressionally mandated study that includes special care unit residents among the 6800 nursing

home residents in the study sample-suggest that

the major factor distinguishing special care unit

residents from individuals with dementia in nonspecialized nursing home units is the severity of their

physical impairments (382). Data from a subsample

of 127 special care unit residents and 103 residents

with dementia in nonspecialized units in the same

facilities indicate that individuals with severe physical impairments and physical care needs are less

likely to be admitted to special care units than to

nonspecialized units. Once other variables were

controlled, there was no significant difference in

behavioral symptoms between the special care unit

residents and the residents with dementia in the

nonspecialized units.

About half of existing special care units admit

residents with the expectation that the individuals

will remain in the unit until they die (194). Other

special care units admit residents with the expecta328-405 - 92 - 2 QL 3

tion that they will be discharged from the unit at

some time prior to their death. In the latter units, the

reported reasons for discharge are: 1) that a resident

has become nonresponsive, physically abusive, or

unable to ambulate independently; 2) that the

resident needs intensive medical care; and 3) that the

resident’s private funds are exhausted (194,485,492).

As noted in table 1-2, special care unit residents

are as likely or more likely than individuals with

dementia in nonspecialized units to receive psychotropic medications (256,292,413). They are much

less likely to be physically restrained, however

(256,292,391,413). A University of North Carolina

study of 31 randomly selected special care units and

32 matched, nonspecialized units in 5 States found

that only 16 percent of the special care unit residents

were physically restrained at one point in time,

compared with 36 percent of the residents with

dementia in nonspecialized units (413).

Finally, five studies show that special care unit

residents are significantly more likely to fall than

other nursing home residents with dementia

(99,265,292,497,521). In one study, the special care

unit residents were not only more likely to fall but

also more likely to be hospitalized for a hip fracture

(99). In another study, the increase in falls among

special care unit residents did not result in an

increase in injuries due to the falls (54). The greater

incidence of falls among special care unit residents

has received little attention thus far, in part because

the relevant data from three of the studies have not

yet been published. The reasons for the greater

incidence of falls are not known.

Costs, Charges, and Payment Methods

Very little information is available about the cost

of special care units. The cost of creating a special

care unit obviously varies, depending on the extent

of new construction or remodeling, if any. One study

of 12 nonrandomly selected special care units found

that the reported costs for new construction and

remodeling ranged from $4100 to $150,000 (275).

Another unit was created for $1300, which covered

the cost of an alarm system, color coding, and a few

other physical changes to the unit (70).

Most—but not all-special care units report that

their operating costs are higher than the operating

costs of nonspecialized units (70,477,485). Of 13

nonrandomly selected special care units in Florida,

for example, 7 reported that their operating costs
28 ● Special Care Units for People With Alzheimer’s and Other Dementias

were higher than the operating costs of nonspecialized units in the same facility; 5 reported no

difference in operating costs, and one reported lower

operating costs (64).

The Multi-State Nursing Home Case-Mix and

Quality Demonstration found that on average the

amount of staff time spent caring for residents with

dementia was greater in the special care units than in

the nonspecialized units in the study sample (143).

The University of North Carolina study had similar

findings (413). The greater amount of staff time

spent caring for special care unit residents undoubtedly translates into higher average operating costs in

the special care units.

Many-but not all-nursing homes charge more

for care in their special care unit than in their

nonspecialized units (247,256,413,477,494). Most

special care units also have a higher proportion of

private-pay residents (292,413,477). It is the privatepay residents who are charged more for their care in

a special care unit than they would be in a

nonspecialized unit. To OTA’s knowledge, no

public program currently pays more for care in a

special care unit than in a nonspecialized nursing

home unit.

According to preliminary data from the 1991

survey of all U.S. nursing homes with more than 30

beds, about half the nursing homes with special care

units charged their private-pay residents more in a

special care unit than the residents would have been

charged in a nonspecialized unit in the same facility

(246). The excess charge averaged $9.24 a day and

ranged from $1 to $83 a day.

Effectiveness of Special Care Units

OTA is aware of 15 studies that evaluate the

effectiveness of special care units for residents and

a few additional studies that evaluate the effectiveness of special care units for residents’ families and

unit staff members. These studies are discussed in

detail in chapter 4.

Nine of the 15 studies did not use a control group

(22,24,56,88,160,171,245,297,312). Each of these

studies found some positive outcomes. The positive

outcomes vary from one study to another, and some

of the studies’ findings are contradictory. Excluding

these contradictory findings, the positive resident

outcomes found in more than one of the nine studies

are decreased nighttime wakefulness, improved

hygiene, and weight gain. A few of the studies found

improvements in the important areas of residents’

ability to perform activities of daily living and

residents’ behavioral symptoms, but an equal number of studies did not find such improvements.

All nine studies suffer from one or more methodological problems that could affect the validity of

their findings. One such problem is small sample

sizes: 6 of the 9 studies had fewer than 12 subjects.

Another methodological problem is inadequate research design and implementation. Some of the

studies are more like descriptive reports than rigorous research from which valid conclusions can be

drawn; in these studies, the outcomes are not clearly

defined, and the measurement process is more

impressionistic than objective or standardized. Only

four of the nine studies report the statistical significance of their findings. Lack of control groups is

another methodological problem, since without a

control group, the impact of the special care unit

cannot be separated from the impact of other factors

that may affect resident outcomes. Finally, many of

the studies were conducted by unit staff members or

other individuals who were involved in planning or

administering the unit. These individuals have an

obvious interest in finding positive outcomes. The

potentially powerful effect of their expectations,

coupled with small sample sizes, lack of a rigorous

research design, and lack of control groups mean the

studies’ results—both positive and negative-are

questionable.

Six of the 15 studies evaluating the effectiveness

of special care units for their residents used a control

group. Four of the six studies with a control group

found no statistically significant positive resident

outcomes that could be attributed to the special care

units (80,99,195,489). The resident outcomes measured in one or more of these four studies were

cognitive functioning, ability to perform activities of

daily living, mood, behavioral symptoms, and rate of

hospitalization.

Two of the six studies with a control group found

positive resident outcomes. One study found that

over a l-year period, 14 residents of one special care

unit declined significantly less than 14 residents

with dementia in nonspecialized units of the same

facility in their ability to perform activities of daily

living (392). The other study found that 13 residents

of one special care unit exhibited significantly fewer

catastrophic reactions than 9 residents with dementia in nonspecialized units of the same facility (265).
Chapter 1--Overview and Policy Implications . 29

In the latter study, the special care unit residents also

interacted significantly more with staff members,

but there was no effect of the unit on the residents’

ability to perform activities of daily living.

The samples for the six studies that used a control

group are larger than the samples for the nine studies

that did not use a control group. Their research

design and implementation are more rigorous, and

the study outcomes are more precisely defined and

measured. Use of a control group also increases the

presumed validity of their findings. On the other

hand, each of the studies has one or more methodological problems that could affect the validity of its

findings. Although the study samples are, on average, larger than the study samples in the nine studies

that did not use a control group, some of the samples

are still quite small. Selection bias is another

problem that could affect the validity of the studies’

findings. If the special care unit residents and the

control group subjects differed in significant ways at

the start of the studies, these differences, rather than

the impact of the special care unit, could account for

the observed outcomes. Randomization of subjects

to the special care unit or control group would be the

ideal way to address this problem, but family

preferences, subject attrition, and other factors

interfered with randomization in one of the two

studies in which it was attempted (265,489). Other

methodological problems that could affect the validity of the studies’ findings are discussed in chapter

4.

Four studies evaluate the effect of special care

units on the unit staff over time. Three of these

studies found no statistically significant effects

(81,88,195). The fourth study found a significant

reduction in stress among 15 special care unit staff

members and a significant difference on one of three

indicators of burnout between the 15 special care

unit staff members and 49 staff members on

nonspecialized nursing home units (265). This study

also found a statistically significant improvement in

the scores of the special care unit staff members on

one of six indicators of job satisfaction. The study

found no other significant effects of the special care

unit on staff stress, burnout, or job satisfaction.

Three studies measured staff knowledge about

dementia (81,88,265). In each of the studies, the

special care unit staff members received training

about dementia. None of the studies found any

statistically significant effect of the training on the

special care unit staff members’ knowledge about

dementia (see ch. 4).

Four studies evaluate the effect of special care

units on residents’ families over time. Two of the

four studies found no statistically significant effects

(76,265). One of the remaining studies found a

significant increase in family members’ satisfaction

with the care provided for their relative with

dementia over the 3-month period after the individual was admitted to a special care unit (88). The

other study found a significant reduction in family

members’ feelings of anxiety, depression, guilt, and

grief after their relative with dementia was admitted

to a special care unit (489). One descriptive study

found that families of special care unit residents

were significantly more likely than families of

residents with dementia in nonspecialized nursing

home units to visit their relative regularly (413). It is

not clear whether the latter finding is attributable to

the effect of the special care units or to preexisting

differences between the two groups of families,

however.

A few of the 15 evaluative studies had negative

findings. Maas and Buckwalter report a trend for

individuals with dementia to become more active

after being admitted to a special care unit (265). This

increased activity includes both positive behaviors,

such as interacting with staff members, and negative

behaviors, such as noisiness, restlessness, and screaming. Bullock et al. found an increase in verbal abuse

and resistiveness over time among the special care

unit residents they studied (56).

Insummary, only two of the six evaluative studies

that used a control group found any positive resident

outcomes. Only one of the four studies that evaluated the effect of special care units on the unit staff

found any positive outcomes, and only two of the

four studies that evaluated the effect of special care

units on residents’ families found any positive

outcomes. For most outcomes, the positive findings

of one study are contradicted by the findings of other

studies. Moreover, some of the statistically significant positive findings in these studies are relatively

trivial, and a few of the studies had negative

findings.

The limited positive findings in some of these

evaluative studies and the lack of positive findings

in other studies are surprising. After reporting the

lack of positive findings in a study of families of
30 ● Special Care Units for People with Alzheimer’s and Other Dementias

special care unit residents, one researcher commented:

Finally, I am left trying to reconcile these results,

showing no special care unit superiority, with the

palpable sense of excitement, of mission, and of

relief that the special care unit families, but not the

other families, show (76).

This comment mirrors the response of many

researchers and others to whom OTA has spoken in

the course of this study: that is, surprise that the

evaluative studies conducted thus far generally do

not show the positive outcomes they expected to find

and thought they had observed informally.

Methodological problems may account in part for

the failure of some of the studies to find positive

outcomes. Small sample sizes are a particular

problem because studies with very small samples

lack the statistical power to detect small, but

clinically significant, positive outcomes (279).

In addition to methodological problems, numerous difficult conceptual and methodological issues

complicate the process of designing and conducting

special care unit research. Table 1-3 lists many of

these issues, some of which are discussed in more

detail in appendix B.

Citing these methodological problems and conceptual and methodological issues, some commentators discount the findings of the available studies.

They imply that no credible research has been done

on special care units or that the studies that had no

positive findings had no findings at all.

In contrast, OTA concludes that at least the six

evaluative studies that used a control group are

credible studies in an area in which good research is

difficult to design and conduct. These studies were

carefully designed and implemented. The special

care units they studied incorporated the patient care

philosophies, staff training, activity programs, and

physical design features recommended in the special

care unit literature. Only one of the studies successfully randomized subjects to the special care unit and

the control group, but the other studies used accepted

statistical methods to correct for pre-existing differences among the subjects that could affect the

outcomes. Although each of the studies has methodological problems, it is unlikely the lack of positive

findings is due entirely to these problems. Despite

methodological problems, the studies’ findings are

meaningful and deserve careful consideration by

policymakers, special care unit advocates, and

others.

It is important to note that none of the available

studies directly measured the impact of special care

units on residents’ quality of life. Quality of life is

difficult to define operationally and particularly

difficult to measure in individuals with dementia.

Several of the clinicians who reviewed this report for

OTA pointed out, however, that improvements in

residents’ quality of life maybe the primary positive

outcome of special care units.

Finally, for policy purposes, it is important to note

that the available evaluative studies provide little or

no information about the effectiveness of different

types of special care units or particular features in

special care units. In each of the six evaluative

studies with a control group, the special care units

differed in many ways from the control group

settings. 10 It is unclear whether the overall milieu of

the special care units or their particular features

account for the studies’ findings. If particular

features account for the findings, it is unclear which

features.

The only evaluative study with a control group

that found a significant effect of the special care unit

on the residents’ ability to perform activities of daily

living focused on a unit that was created with the

addition of an activity room but no other physical

design changes (392). The distinguishing characteristics of the unit, in the view of the researchers, were

the staff’s efforts to accomplish the following

objectives:

. to identify residents’ specific cognitive impairments,

. to treat depression, delusions, and hallucinations,

. to identify medication side effects,

● to maintain residents’ physical health,

. to reduce the use of physical restraints, and

. to increase residents’ participation in activities

(392).

The ongoing involvement of a psychiatrist on the

staff also seems to be unique to this study. It is

unclear which, if any, of these characteristics are

different enough from the characteristics of the

10 Table 4.2 ~ Ch. 4 fists he ch~ges tit were ~de to create he Special Cme tits in each of the Six studies.
Chapter l-Overview and Policy Implications ● 31

Table l-3-Conceptual and Methodological Issues in Designing and

Conducting Special Care Unit Research

• Special care units are extremely diverse. It is difficult to determine which units should be included m

a study sample and which of the many possible unit characteristics are important to study. For purposes

of evaluative research, it is difficult to determine whether the intervention to be studied should be the

unit’s overall milieu or its particular features and, if particular features, which features.

• Individuals with dementia are extremely diverse. It is difficult to determine which of their

characteristics are important to study.

• The characteristics of individuals with dementia are interrelated and changeover time. In the context

of an evaluative study, it is difficult to determine whether these changes reflect the progression of the

residents’ dementing disease or the effects of the special care units.

. Residents’ families and special care unit and other nursing home staff members are diverse. It is

●

•

Ž

•

*

●

•

●

e

●

•o

●

*

●

●

difficult to determine which of their characteristics are important to study.

Many of the potentially important characteristics of the units, the residents, their families, and the staff

members are conceptually vague, difficult to define operationally, and difficult to measure.

The available assessment instruments do not include all the potentially important characteristics of the

units, the residents, their families, or the unit staff members. The reliability and validity of some of

the available instruments has not been demonstrated, and many of the available instruments exhibit

ceiling or floor effects that obscure the full range of responses.

There is insufficient baseline information about many potentially important resident, family, and staff

characteristics.

It is difficult to identify an appropriate control or comparison group.

Preexisting differences between special care unit residents and individuals with dementia in other

settings are likely to bias a study’s findings. Because of family preferences and other factors, random

assignment of subjects to a special care unit or a control group setting maybe impractical.

Researchers often cannot control the services that subjects in the control group receive.

There is disagreement about the outcomes to be studied. This disagreement reflects different values

in the care of nursing home residents with dementia and different expectations about the areas in which

positive outcomes may be found.

Many potentially important resident outcomes, e.g., quality of life and satisfaction with care, are very

difficult to measure in persons with dementia. The outcomes that are easiest to measure are likely to

be trivial.

There are many conceptual and practical difficulties in obtaining consent for research participation

from individuals with dementia and their families.

Because of their cognitive impairments, nursing home residents with dementia are often unable to

participate in conventional research interviews or to provide accurate information about themselves.

Sensory impairments and physical illnesses exacerbate this problem.

Proxy-derived information may not be reliable or valid.

It is difficult to effectively blind interviewers to the subjects’ treatment status.

Sample attrition is very high. Some special care unit studies have lost one-third or more of their

subjects in a year. Although longer studies may be more likely to find significant effects, attrition is

so great that the final sample may be too small to show the effects.

The findings of small studies conducted in different special care units often cannot be pooled because

of differences in the characteristics of the units.

It is unclear when measurements should be made. New admissions to a special care unit may exhibit

temporary negative effects of the move. Long-time residents may have experienced any positive

effects of the unit before the beginning of the study.

SOURCE: Offke of Technology Assessment, 1992.
32 ● Special Care Units for People With Alzheimer’s and Other Dementias

special care units in the other five evaluative studies

with a control group to account for their contradictory findings.

THE REGULATORY

ENVIRONMENT FOR SPECIAL

CARE UNITS

Because of the diversity of special care units, the

fact that existing units frequently do not incorporate

recommended physical design and other features,

and pervasive claims that some special care units

actually provide nothing special for their residents,

many Alzheimer’s advocates, State officials, and

others believe there should be special regulations for

special care units. As of early 1992, special regulations were in place or in various stages of development in many States:

●

●

●

●

●

Six States-Colorado, Iowa, Kansas, Tennessee, Texas, and Washington-had special regulations for special care units.

Five States-Nebraska, New Jersey, North

Carolina, Oklahoma, and Oregon-were in the

process of drafting or approving special regulations for special care units.

One additional State-Arkansas-had legislation mandating the development of special

regulations for special care units.

Two States—Kentucky and Michigan-had

special requirements for special care units or

special Alzheimer’s nursing homes established

with exemptions from the States’ certificate of

need process.

In three additional States—Arizona, Indiana,

and Rhode Island, the State-appointed Alzheimer’s task force or long-term care advisory

council had recommended the development of

regulations, and in two of the States—Arizona

and Rhode Island-the State-appointed body

had developed draft regulations.

At the State level, interest in regulating special

care units is growing rapidly. In some States, this

interest is unopposed. In other States, the issue of

special regulations for special care units is highly

controversial.

State regulations for special care units have been

or will be superimposed on the existing regulatory

structure for nursing homes—a complex, multifaceted structure with six major components:

1)

2)

3)

4)

5)

6)

In

the Federal regulations for Medicare and

Medicaid certification of nursing homes,

State licensing regulations for nursing homes,

State certificate of need regulations for nursing

homes,

other State and local government regulations

that affect nursing homes,

the survey and certification procedures associated with each type of regulations, and

the oversight procedures of each State’s LongTerm Care Ombudsman Program.

addition to these six components, Federal,

State, and local government regulations for nursing

homes incorporate standards established by private

organizations, such as the National Fire Prevention

Association’s Life Safety Code standards. Special

care units must comply with these standards, as well

as the regulations and survey, certification, and

oversight procedures listed above and any special

regulations that may apply.

Special care unit operators and others often

complain that the regulations and survey, certification, and oversight procedures for nursing homes

discourage innovation in special care units by

interfering with the use of physical design and other

features they believe would be effective for residents

with dementia. OTA has been told about instances in

which special care units could not get approval for

the use of innovative features of various kinds;

instances in which approval was held up for years,

thus adding enormously to the cost of establishing

the unit; and instances in which approval was given

by one government agency and later denied by

another government agency, sometimes after the

special care unit opened. Thus, while there is

pressure on the one hand for more regulation of

special care units, some people advocate less regulation, at least on a selective basis, to allow greater

innovation.

The regulatory structure for nursing homes is

currently in flux due to implementation of the

nursing home reform provisions of OBRA-87 and

related legislation. The nursing home reform provisions of OBRA-87 changed the Federal regulations

for Medicare and Medicaid certification of nursing

homes and the survey and certification procedures

associated with those regulations. Many provisions

of OBRA-87 are relevant to the frequently cited

complaints about the care provided for nursing home

residents with dementia. This section summarizes
Chapter l-Overview and Policy Implications . 33

OTA’s findings with respect to the relevant provisions of OBRA-87 and the existing State regulations

for special care units. Both of these topics are

discussed at greater length in chapter 5.

On the basis of the information presented here and

in chapter 5, OTA concludes that OBRA-87 provides a better framework for regulating special care

units than any of the existing State special care unit

regulations or any special regulations that could be

devised at this time. This conclusion and alternatives

to address the concerns that lead some people to

advocate special regulations for special care units

are discussed in a later section of this chapter, as are

methods to allow greater innovation in special care

units.

The Nursing Home Reform Provisions

of OBRA-87

Through OBRA-87, Congress sought to create a

comprehensive regulatory structure that would assure high-quality, individualized care for all nursing

home residents. Under OBRA-87, a nursing home

must now meet the following requirements to be

certified for Medicare or Medicaid:

●

●

●

●

●

“The facility must care for its residents in a

manner and in an environment that promotes

maintenance or enhancement of each resident’s

quality of life.”

‘‘The facility must promote care for residents in

a manner and in an environment that maintains

or enhances each resident’s dignity and respect

in full recognition of his or her individuality. ’

‘‘The facility must conduct initially and periodically a comprehensive, accurate, standardized,

reproducible assessment of each resident’s

functional capacity.’

“The facility must develop a comprehensive

care plan for each resident that includes measurable objectives and timetables to meet a

resident’s medical, nursing, mental, and psychosocial needs that are identified in the

comprehensive assessment. ’

“Each resident must receive and the facility

must provide the necessary care and services to

attain or maintain the highest practicable physical, mental, and psychosocial well-being, in

accordance with the comprehensive assessment

and plan of care” (463).

Chapter 5 lists other provisions of OBRA-87 that

are relevant to the frequently cited complaints about

the care provided for nursing home residents with

dementia. These other provisions deal with maintaining residents’ functional abilities, providing

activities that meet residents’ needs, providing

specialized rehabilitative services, minimizing the

use of psychotropic medications and physical restraints, allowing residents to use their own belongings, involving residents and their families in care

planning, training for nurse aides, and other issues.

The provisions of OBRA-87 rarely mention

dementia, but the resident assessment system developed to implement OBRA-87 emphasizes the evaluation of a resident’s cognitive status and the

problems and care needs that are common among

nursing home residents with dementia (see ch. 5). As

just noted, the regulations require that residents’

needs must be assessed and that once their needs are

identified, appropriate services must be provided to

meet the needs.

If fully implemented, the provisions of OBRA-87

would greatly improve the care of nursing home

residents with dementia. Two factors could limit the

benefits of OBRA-87 for individuals with dementia.

One obvious factor is a failure to implement the

provisions, which could occur for a variety of

reasons, including insufficient government funding

for nursing home care, for inspections, or for

surveyor training. The second factor is lack of

knowledge among many nursing home administrators, staff members, and surveyors about what

constitutes appropriate care for individuals with

dementia-e. g., lack of knowledge about what

activities and rehabilitative services would meet the

residents’ needs.

Existing State Regulations for

Special Care Units

As noted above, six States—Colorado’ Iowa,

Kansas, Tennessee, Texas, and Washington-had

regulations for special care units as of early 1992.

Each of the States’ regulations address several

common areas, e.g., admission criteria, safety, staff

training, and physical design, but their requirements

in these areas differ (see ch. 5). Each State requires

some features that are not addressed in the other

States’ regulations, e.g., Iowa’s requirement that a

unit and its outdoor area must have no steps or slopes

and Washington’s requirement that the units floors’

walls, and ceilings must be of contrasting colors.

Some of the requirements are very detailed.
34 ● Special Care Units for People With Alzheimer’s and Other Dementias

Thus far, State regulations for special care units

have been developed largely without regard for the

provisions of OBRA-87. Some of the six States’

requirements for special care units duplicate OBRA

requirements that apply to all nursing homes. Some

of the special care unit requirements, e.g., those

dealing with residents’ rights to have visitors, are

weaker than the comparable OBRA requirements.

OTA’s analysis of the six States’ regulations

indicates several problems that are likely to arise in

any special care unit regulations that could be

devised at present. First, by requiring particular

features in special care units, the six States’ regulations imply that those features are unique to or more

important in the care of residents with dementia than

in the care of other nursing home residents. Yet some

of the required features probably are not more

important for residents with dementia than for other

residents. Examples are Iowa’s and Tennessee’s

requirements for an interdisciplinary care planning

team, Colorado’s requirement for sufficient staff to

provide for the residents’ needs, and Texas’ requirement for a social worker to assess the residents on

admission, conduct family support group meetings,

and identify and arrange for the use of community

resources. If these features are important for all

nursing home residents, it is misleading and potentially harmful to residents of nonspecialized units to

require the features differentially for special care

units.

Second, by requiring particular features in special

care units, the six States’ regulations imply that

those features are more important in the care of

residents with dementia than other features that are

not required by the regulations. Yet experts in

dementia care disagree about which features are

most important in the care of these residents. The

existing special care unit regulations emphasize staff

training and physical design features and place far

less emphasis on specialized activity programs and

programs to involve and support residents’ families.

Although there is no research-based evidence that

any of these features are more likely than the others

to produce positive resident outcomes, some experts

in dementia care would undoubtedly argue that

specialized activity programs and family support

programs are as important as staff training and

physical design features in the care of these residents.

Third, by requiring particular features in special

care units, the six States’ regulations imply that the

resources available to the unit should be expended

for the required features rather than other features.

Since most special care units have limited resources,

features not required in special care unit regulations

are likely to be neglected.

The six States’ requirements for physical design

features are especially troublesome, in part because

they are so detailed. To incorporate some of the

required features involves extensive remodeling,

with obvious cost implications. In some facilities,

the required features cannot be incorporated, even

with extensive remodeling. For such facilities, the

requirements can lead to costly new construction or

a decision by the nursing home not to establish a

special care unit (337). If there were evidence of the

effectiveness of particular physical design features,

it might be reasonable to require the features. To

require the features without such evidence is probably inappropriate.

The impact of the six States’ special care unit

regulations on the growth of special care units in

each State is unclear. Anecdotal evidence suggests

that the regulations have discouraged some nursing

homes from establishing special care units. The

States vary in the extent to which they are enforcing

their regulations, but several nursing homes in at

least two of the States have closed their special care

unit because the unit could not meet the State

requirements (169,267). It is possible that special

care unit regulations could cause the closing of units

that provide good care for their residents, even

though they do not meet one or more of the State

requirements. There is no evidence to determine

whether this has occurred.

As noted earlier, Oklahoma is developing regulations for special care units. The regulations are

intended by their supporters to set a‘ ‘basic standard

of care,” rather than to define what would be ‘‘ideal

or high-quality care” (118). In the development

process, the draft regulations have become increasingly detailed, moving away from what some of their

supporters first envisioned as broad, general guidelines that would inform families, nursing home

administrators, and others about what constitutes

basic care. In the spring of 1992, a telephone

followup to the 1991 survey of all U.S. nursing

homes with more than 30 beds found that some

Oklahoma nursing homes that had a special care unit
Chapter l-Overview and Policy Implications ● 35

in 1991 reported they had since closed the unit (246).

When asked why they had closed their special care

unit, most of the respondents declined to give a

reason, but one respondent said the unit in his

facility had been closed in anticipation of very

detailed regulatory requirements the unit would not

be able to meet. OTA has no information about the

quality of care provided by this unit or any of the

other special care units in Oklahoma that were

closed between 1991 and 1992.

POLICY IMPLICATIONS

Findings from the available research on special

care units and the information just presented about

the regulatory environment for special care units and

problems with the existing State special care unit

regulations have implications for each of the policy

areas addressed in this report: consumer education,

research, regulation, and reimbursement.

Implications for Consumer Education About

Special Care Units

The diversity of existing special care units substantiates the need for consumer education. Families

and others who make decisions about nursing home

care for individuals with dementia could reasonably

assume that all special care units are alike. They

need to know that special care units vary in virtually

every respect, including the number of residents they

serve, their patient care philosophies and goals, their

physical design features, their staff-to-resident ratios, their admission and discharge policies, and

their charges. Ideally families and others would have

easy access to information about each of these

characteristics for the special care units they are

considering. If such information is not available,

families and others need to know what questions to

ask to obtain the information when they call or visit

a special care unit.

To compile information about the special care

units in a given jurisdiction would be more or less

difficult, depending on the number of units in the

jurisdiction. In jurisdictions with more than one

special care unit, definitional issues would have to

be resolved so that information about different units

would be comparable. Since the units are likely to

change over time, an ongoing effort would be

required to update the information.

Compiling and updating information about the

special care units in a given jurisdiction could be a

project of an Alzheimer’s Association chapter,

another private agency, or a public agency .11 Inmost

jurisdictions, a local agency would be the most

appropriate organization to perform this task. Because of the amount of detail involved and the

necessity for frequent updates, the information could

not be effectively compiled and updated at the

Federal level. In States with relatively few special

care units, it probably could be compiled and

updated at the State level.

Descriptive information about the characteristics

of particular special care units would be useful to

families and others because the characteristics of

some units (e.g., the units’ patient care philosophies,

discharge policies, or design features) would match

their individual needs, preferences, and values. It

should be recognized, however, that the available

research findings do not provide objective standards

to help families and others evaluate special care

units. Although some unit characteristics may seem

right intuitively and match the needs, preferences,

and values of some families, the available research

findings do not prove that any particular unit

characteristics are associated with better resident

outcomes.

Based on the available information, the message

for consumers is that special care units vary greatly;

that there is little research-based evidence of better

resident outcomes in special care units than in

nonspecialized units; and that although a given

special care unit may have better resident outcomes

than another special care unit or a nonspecialized

unit, there is no research-based evidence to identify

the unit characteristics that explain the different

outcomes. On the positive side, it can be said that

special care units are likely to have fewer residents

and more staff members per resident than nonspecialized nursing home units; that in comparison with

the residents of nonspecialized units, special care

unit residents are less likely to be physically

restrained; and that even though there is little

research-based evidence of better resident outcomes

in special care units than in nonspecialized units,

there is much less evidence of worse outcomes in

special care units. Consumers need to know, however, that these statements refer to averages that may

not apply to a given unit. Although this message

11 IU some jfis&ctions, a public or private agency compiles and updates similar types of information about IOCd nursing homes.
36 . Special Care Units for People With Alzheimer’s and Other Dementias

does not meet the need for objective standards to

evaluate special care units, it does accurately represent what is known about the units.

A few States have or are developing consumer

education materials about special care units. New

Hampshire has published an 8-page booklet intended for family members who are trying to

evaluate special care units and nursing home operators who are interested in establishing a special care

unit (325). The booklet describes the characteristics

of an individual with Alzheimer’s disease, the needs

of the individual and the family, and the characteristics of specialized dementia care. It provides questions and a checklist that families can use to evaluate

special care units. For nursing home operators, the

booklet lists reasons for having a special care unit,

questions the nursing home operator and staff should

consider in establishing a special care unit, and

factors that will influence the success of the unit.

The American Association of Homes for the

Aging, the Massachusetts Alzheimer’s Disease Research Center, the National Institute on Aging’s

Alzheimer’s Disease Education and Referral Center,

the University of South Florida’s Suncoast Gerontology Center, and the University of WisconsinMilwaukee’s Center for Architecture and Urban

Planning Research have developed guidelines for

special care units, and other organizations are

developing such guidelines (see ch. 5). The Alzheimer’s Association released its special care unit

guidelines in July 1992. Some of these organizations’ guidelines are intended primarily to assist

families in evaluating special care units and other

organizations’ guidelines are intended primarily to

assist nursing home operators in planning and

setting up a special care unit.

OTA’s review of the various organizations’ special care unit guidelines indicates that the guidelines

are quite similar in content, despite some differences

in emphasis, format, and wording. Each organization’s guidelines cite numerous unit characteristics

the organization considers desirable. This information is useful for families and others who are trying

to evaluate special care units, but consumers need to

know that statements about the desirability of particular unit characteristics are based on expert opinion and that experts disagree about these matters.

Information about the theoretical concepts of

specialized dementia care discussed earlier in this

chapter may also be useful for families and others

who are trying to evaluate special care units. They

need to know, however, that the concepts are not

implemented in all special care units and that the

same concept may be implemented differently, with

different results, in different units.

Given the availability of special care unit guidelines developed by various organizations, there is no

need for Federal agencies to develop additional

guidelines. Federal agencies that serve elderly people and their families could play a valuable role,

however, in disseminating the available guidelines

and promoting their use.

As noted earlier, the task of compiling and

updating information about the characteristics of

special care units in a given jurisdiction is probably

most effectively performed by local agencies, including Alzheimer’s Association chapters. In some

jurisdictions, however, local agencies that receive

Federal funding, such as area agencies on aging

(AAAs), might be the most appropriate organizations to perform the function.

In thes summer of 1992, the Alzheimer’s Association contracted for a study to identify and document

consumer problems with special care units. The

results of this study, which will be available in the

spring of 1993, will provide useful information

about the extent and types of problems families and

others encounter in dealing with special care units

and may indicate a need for additional government

initiatives in this area.

Implications for Research on

Special Care Units

The findings of the available special care unit

studies confirm the need for research on many

unresolved issues. For public policy purposes, the

most important research issues are those pertaining

to effectiveness. Evaluative research is needed to

answer three interrelated questions about the effectiveness of special care units for their residents:

1)

2)

3)

Do special care units improve resident outcomes?

If so, is it the overall milieu or particular unit

characteristics that are effective, and if it is

particular unit characteristics, which characteristics?

Are special care units effective for all nursing

home residents with dementia or only certain
Chapter l-Overview and Policy Implications ● 37

types of residents with dementia, and if only

certain types, which types?

Research on the effectiveness of special care units

for residents’ families, unit staff members, and

nondemented nursing home residents is also needed.

Descriptive information is needed to provide a

better general understanding of special care units

and to develop descriptive topologies. Such typologies, which would be based on unit and perhaps

resident characteristics, are important for designing

evaluative studies and understanding and generalizing from their findings. To be useful for public

policy purposes, descriptive topologies must represent the full range of existing units.

Information is needed about the cost of caring for

individuals with dementia in special care units vs.

nonspecialized nursing home units. Because of the

diversity of special care units, this information will

be useful only if it is developed in the context of an

inclusive typology of the units.

OTA is aware of several sources of forthcoming

descriptive information that will meet some of these

needs. One source is the 1991 survey of all nursing

homes with more than 30 beds. The survey’s

findings with respect to the proportion of nursing

homes that had a special care unit in 1991 were cited

earlier in this chapter. The survey also included

questions about the physical features of the units,

their admission and discharge criteria, staff training

programs, staff support groups, activity programs,

family programs, and sources of reimbursement.

A second source of forthcoming descriptive

information is the resident assessments mandated by

the nursing home reform provisions of OBRA-87.

All Medicare and Medicaid-certified nursing homes

are now required to assess each of their residents,

including special care unit residents, at the time of

the residents’ admission to the nursing home and

annually thereafter. OBRA-87 mandated the development of a set of core items to be addressed in the

required assessment, and the core items include each

of the resident characteristics discussed in this

chapter.

Lastly, as noted earlier, the Multi-State Nursing

Home Case-Mix and Quality Demonstration includes special care unit residents among the 6800

nursing home residents in the study sample. Information has been collected on more than 300

residents of 20 special care units in 6 States (137). To

OTA’s knowledge, this study is the first to include

a time-and-motion analysis of resource use in

special care units.

Given the pervasive complaints and concerns

about the care provided for nursing home residents

with dementia, the extensive involvement of government in regulating nursing homes and paying for

nursing home care, and the competing claims of

special care unit advocates and critics, one might

expect that Federal agencies would have funded

many special care unit studies. In 1984, the Task

Force on Alzheimer’s Disease of the U.S. Department of Health and Human Services noted the need

for this research (470). In 1986, Congress mandated

special care unit research (P.L. 99-660), but funding

for the research was never appropriated. Between

1986 and 1990, seven Federal agencies each provided funding for one special care unit study .12

Three of the studies were small pilot studies, and two

were relatively small components of large-scale

nursing home studies. Two of the National Institute

on Aging’s Alzheimer’s Disease Research Centers

each provided funding for one special care unit

study. The Alzheimer’s Association, the Brookdale

Foundation, the State of California, and three

universities each provided funding for one special

care unit study. Most of the other special care unit

studies have been small pilot studies with no funding

source. 13

In 1990, the Alzheimer’s Disease Research Center

at Washington University in St. Louis sponsored a

special care unit conference that included workshops

for researchers. The intent of the workshops was to

identify the problems that were obstructing progress

in special care unit research. Many interrelated

12 The seven agencies and the studies for which they provided full or partial funding are: 1) ~“ “stration on Aging: “Special Care Units for

Alzheimer’s Disease Patients: An Exploratory Study of Dementia Speciilc Units” (64); 2) Agency for Health Care Policy and Research: 1987 National

Medical Expenditure Survey (249); 3) Department of Veterans Affairs: “A Comparison of Alzheimer Care Units: Veterans Administration State, and

Private” (232); 4) Health Care Financing Administration: Multi-State Nursing Home Case-Mix and Quality Demonstration (144,382); 5) Health

Resources and Services A&mm“ “stration: “Hospitalization Rates in Nursing Home Residents With Dementia: A Pilot Study of the Impact of a Special

Care Unit” (99); 6) National Center for Nursing Research: “Nursing Evaluation Research: Alzheimer’s Care Unit” (265); and 7) National Institute on

Aging: “Five-State Study of Special Care Units in Nursing Homes” (194).

Is ‘r’ables 3-1% b, and c in & 3 and tables L&l ~d A-Z in Ch. A ~St tie funding Sources for ~1 the speci~ cme unit studies discussed in ~SRpOfi.
38 ● Special Care Units for People With Alzheimer’s and Other Dementias

problems were identified, including the difficulty of

obtaining funding for special care unit research, the

difficulty of getting special care unit research

published, and numerous conceptual and methodological issues in designing and conducting this kind

of research (see app. B). Following the conference,

the researchers formed an ad hoc group, the

Workgroup on Research and Evaluation of Special

Care Units, to address the identified problems. By

the end of 1991, the workgroup had over 100

members (193). It has no formal sponsor and no

funding.

In the fall 1991, the National Institute on Aging

funded nine studies under anew “Special Care Units

Initiative, ’ and the agency funded a tenth study in

early 1992. Two of the studies will develop descriptive topologies of special care units. Two other

studies will compare service use and costs for

special care unit residents and demented and nondemented residents in nonspecialized units in a total of

24 nursing homes. Another study will compare

resident outcomes in the special care units and

nonspecialized units in the Multi-State Nursing

Home Case-Mix and Quality Demonstration.

The National Institute on Aging’s “Special Care

Units Initiative” represents a major commitment to

special care unit research. The results of the 10

studies will greatly expand knowledge about special

care units. Moreover, the studies were funded under

an arrangement that requires the 10 research teams

to collaborate on the development of common

definitions and assessment procedures so that, although the studies focus on different issues, their

findings will be comparable.

As noted earlier, the effectiveness of special care

units is the most important research issue for public

policy purposes. Although several of the National

Institute on Aging studies will evaluate the effectiveness of the units they are studying, the complexity of the policy-related questions about effectiveness means more research will be needed on this

issue. Some researchers believe that a clinical trial

with a randomized case control design will eventually be needed to determine the effectiveness of

special care units (143,41 1). Currently funded studies will provide the basis for designing such a

clinical trial. The legal and ethical issues discussed

later in this chapter also raise important policyrelated questions that are not addressed in the

National Institute on Aging studies.

To complement special care unit research, studies

are needed in two broad areas:

1.

2.

physical design features and care methods for

people with dementia generally; and

alternatives to special care units, including

special programs for nursing home residents

with dementia in nonspecialized units, special

residential care programs inboard and care and

assisted living facilities, and special adult day

and in-home services.

Studies in the first area can be conducted in

special care units or in other residential and nonresidential care settings. It may be easier and more

efficient to conduct some of these studies in special

care units, however, because all the residents have

dementia.

Research on specific design features and patient

care methods may help to explain the findings of

special care unit research. If certain design features

or care methods are shown to be effective or

ineffective in general or for certain types of residents, those findings may explain the results of

special care unit studies. More importantly perhaps,

studies of specific design features and care methods

can identify features and methods that will improve

the care of residents with dementia in nonspecialized

units and other settings as well as in special care

units.

The Robert Wood Johnson Foundation and the

Cleveland Foundation have funded research on

various design features and patient care methods in

two special care units at the Corinne Dolan Alzheimer’s Center in Chardon, OH. Studies of this kind

have also been conducted in some of the special care

units at VA medical centers (159). Three special care

units that constitute the Dementia Study Unit at the

VA medical center in Bedford, MA, have been the

site for numerous studies on the care of individuals

with dementia in the late stages of their illness. To

OTA’s knowledge, the Dementia Study Unit is the

only research group in the country to focus its efforts

on the difficult, emotionally charged, clinical issues

in late-stage and terminal care for individuals with

dementia. The research group has studied swallowing and feeding difficulties (476), tube feeding

(475), use of antibiotics vs. palliative measures to

treat fever in late-stage patients (135), and use of a

hospice-like approach to care for late-stage patients

(474).
Chapter l-Overview and Policy Implications ● 39

Implications for Government Regulation of

Special Care Units

The diversity of special care units, the fact that

existing units often do not incorporate the features

recommended for special care units, and pervasive

claims that some special care units just use the words

special care as a marketing tool and actually provide

nothing special for their residents lead many Alzheimer’s advocates, State officials, and others to

support the development of special regulations for

special care units. On the other hand, the lack of

agreement among experts about what features are

most important in the care of residents with dementia and the lack of research-based evidence showing

that any particular features are associated with better

resident outcomes make it difficult to justify the

selection of particular features that should be required in special care units.

The Alzheimer’s Association has developed legislative principles that identify 11 areas a State

should include when drafting special care unit

legislation or regulations: 1) statement of mission,

2) involvement of family members, 3) plan of care,

4) therapeutic programs, 5) residents’ rights,

6) environment, 7) safety, 8) staffing patterns and

training, 9) cost of care, 10) quality assurance, and

11) enforcement (4). As described in chapter 5, the

special care unit guidelines developed by various

organizations identify similar areas that require

special consideration in the care of nursing home

residents with dementia. Thus, there appears to be

some agreement about the areas of concern.

Having agreement about areas of concern is

helpful in “ thinking about the particular features that

might be desirable or required in special care units,

but agreement about areas of concern is not the same

as agreement about particular features. For example,

agreement that therapeutic programs and physical

environment are areas of concern does not constitute

agreement about which therapeutic programs or

physical design features should be required. OTA

has observed that in discussions about special care

unit regulations, agreement about areas of concern

often masks considerable disagreement about particular features and gives an erroneous impression that

there is consensus about the particular features that

should be required.

As noted earlier, OTA’s analysis of the existing

State regulations for special care units indicates

several problems that are likely to arise in any

special care unit regulations that could be devised at

present. First, regulatory requirements for particular

features in special care units imply that those

features are unique to or more important for special

care unit residents than for other nursing home

residents. Yet many of the features that are important

for special care unit residents are probably just as

important for other residents. This is especially true

since most nursing home residents with dementia are

not in special care units now and may never be.

Second, regulatory requirements for particular

features in special care units imply that those

features are more important in the care of special

care unit residents than other features that are not

required by the regulations and that the resources

available to the unit should be expended for the

required features. Most special care units have

limited resources, so features that are not required in

special care unit regulations are likely to be neglected. Yet experts in dementia care disagree about

which features are most important in the care of

these residents.

The problem of special care unit regulations that

omit features regarded as important by some dementia experts could be solved by expanding the

regulations to require those features. The more the

regulations are expanded, however, the more likely

it is that the required features will be important for

other nursing home residents as well.

Given these problems, OTA concludes that OBRA87 provides a better framework for regulating

special care units than any special regulations that

could be devised at this time. The advantages of

OBRA-87 are its comprehensiveness, its emphasis

on individualized care, and its mandated assessment

and care planning procedures. The primary problem

with OBRA-87 for special care units is the same

problem faced by anyone who ties to develop

regulations for special care units: i.e., the lack of

agreement among experts about what features are

most important in the care of residents with dementia and thus what should be special about special care

units. Solving this problem through support for

research to evaluate the effectiveness of particular

features may eventually provide a substantive basis

for special care unit regulations. In the meantime, it

is important to consider alternate ways of addressing

the concerns that have led many Alzheimer’s
40 ● Special Care Units for People With Alzheimer’s and Other Dementias

advocates, State officials, and others to favor the

development of special care unit regulations.

Alternatives to Special Care Unit Regulations

Alzheimer’s advocates, State officials, and others

who favor the development of special care unit

regulations often cite the need to protect individuals

with dementia from poor-quality care and the need

to protect these individuals and their families from

nursing homes that claim to provide special care but

actually do not. Some people who favor the development of special care unit regulations also cite a need

to assist nursing homes in designing their special

care units and to assist surveyors in inspecting the

units. Each of these objectives can be achieved

without special regulations.

In discussions about special care unit regulations,

it is sometimes suggested that there are two types of

special care units—’ good’ units and ‘bad’ units—

and that regulations are needed to eliminate the

“bad’ units. In this context, it is probably more accurate to think about four types of special care units:

1.

2.

3.

4.

units that provide the features a given observer

considers important for residents with dementia,

units that do not provide those features but do

provide other features the unit operator, staff,

or advisers consider important for residents

with dementia,

units that claim to provide special care but

actually provide nothing special for their

residents, and

units that provide poor-quality care that would

be inappropriate for any nursing home resident.

Anecdotal evidence suggests that there are very

few units of the last type, and the one study that has

addressed this issue supports that conclusion (154).

OBRA-87 provides a sufficient basis for censuring

units of that type, without the need for special

regulations.

Most special care units are of the first three types.

Objective classification of particular units into these

types would be difficult, since the classification

depends on a given observer’s opinion about the

features that are important in a special care unit and

a judgment about the intentions of each facility’s

administrators. Although some nursing home administrators may knowingly provide no special

services in their special care unit, other administrators probably believe erroneously that they are

providing appropriate care. One commentator refers

to the latter units and their administrators as

“innocent” (21).

An earlier section of this chapter discussed the

need for consumer education about special care

units. As noted there, families and others who are

trying to evaluate special care units need to know

that existing units vary greatly. They need comparable information about the characteristics of the

special care units in their geographic area and

information about characteristics that may be important in a special care unit. Lastly, they need to know

that experts disagree about the importance of particular unit characteristics and that their personal

preferences and values are relevant in selecting a

unit. These types of information will not protect all

potential special care unit residents and their families from nursing homes that provide no special

services in their special care unit. Neither will these

individuals be protected, however, by regulations

that require special care units to incorporate features

that have not been proven to be effective.

For the purpose of consumer protection, nursing

homes could be required to disclose certain information about their special care units to potential

residents and their families. In particular, they could

be required to disclose what is special about the unit;

how the unit differs from nonspecialized units in the

same facility; how physical restraints and psychotropic medications are used in the unit; whether

there are behavioral problems that cannot be handled

on the unit; whether it is expected that individuals

who are admitted to the unit will be discharged

before their death and, if so, for what reasons. A

disclosure requirement could be mandated at the

Federal level within the framework of OBRA-87 or

at the State level within the framework of State

licensing regulations. Such a disclosure requirement

would be quite different from regulations that

require particular features in a special care unit. It

would make useful information available to consumers without suggesting that particular features

are known to be effective. A disclosure requirement

would not eliminate the need for the other types of

consumer information described above.

Guidelines are the best method to assist nursing

homes in designing their special care units. Several

of the guideline documents mentioned earlier in this

chapter and discussed at greater length in chapter 5
Chapter l-Overview and Policy Implications . 41

are intended primarily for this purpose.14 More so

than regulations, guidelines can convey the objectives of specialized dementia care, the current

uncertainty about the most effective methods of

care, and the need for innovation and evaluative

research in special care units.

Surveyor guidelines developed within the framework of OBRA-87 are the best method to assist

nursing home surveyors in inspecting special care

units. Since 1989, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has

been working on guidelines to help its surveyors

evaluate special care units. JCAHO is a private

organization that accredits hospitals, home health

agencies, mental health organizations, and about

1000 nursing homes in the United States (214). The

commission’s effort to develop guidelines evolved

from its surveyors’ questions about how to evaluate

the increasing number of special care units they were

seeing in nursing homes accredited by the commission (434).

JCAHO’s draft surveyor guidelines provide what

is, in effect, a detailed answer to the question, ‘What

constitutes appropriate care for nursing home residents with dementia?’ The guidelines are based on

the commission’s standards for all nursing homes

(435). No changes have been made to the basic

standards. Instead, statements have been added next

to many of the standards to explain the implications

of the standard for the care of residents with

dementia and to describe the process the surveyor

should follow in scoring the special care unit on that

standard. Although some commentators may disagree with some of the statements, the JCAHO

guidelines provide a valuable model which could be

adapted to OBRA regulations.

Waivers and Other Methods To Allow

Innovation in Special Care Units

As noted earlier, special care unit operators and

others often complain that the existing regulations

and survey and certification procedures for nursing

homes discourage innovation by interfering with the

use of physical design and other features they

believe would be effective for residents with dementia. From a societal perspective, one objective, and

perhaps the most important objective, of special care

units is to develop better ways of caring for nursing

home residents with dementia. To accomplish this

objective, methods must be found to allow and

encourage innovation in special care units.

One method to allow greater innovation in special

care units is to eliminate regulations that restrict

innovative physical design and other features. Although this method may eventually be appropriate,

the current lack of agreement about the features that

are important in a special care unit and the lack of

research-based evidence for the effectiveness of

particular features make decisions to eliminate

existing regulations premature.

A better method is to create a process by which

individual special care units could obtain waivers to

implement physical design features, patient care

practices, and other innovations they believe will

benefit residents with dementia. Most existing

regulatory codes have a process for granting waivers, but in some and perhaps many States, the

waivers that are granted are for relatively trivial

changes (201). The purpose of creating a waiver

process for special care units would be to allow the

implementation and evaluation of nontrivial innovations. Since such innovations would change the care

of individuals with dementia in significant ways, the

waivers should only be granted on a facility-byfacility basis after careful prior review by a panel

that includes health care professionals, consumer

advocates, industry representatives, architects, designers, surveyors, fire marshals, building inspectors, and others. The panel would have to determine

whether a proposed innovation was worth evaluating and whether sufficient safeguards had been built

into the proposal to protect the residents. The panel

would also have to monitor the waivered innovations on an ongoing basis to assure the safety and

well-being of the residents. A panel of this kind

probably would function most effectively at the

State level, but the Federal Government could

encourage the development of such panels through

demonstration grants.

At present, State efforts with respect to special

care units are focused primarily on the development

14 E-Pl~~ of @&~c dOCW~nt~ int~~d~d to assist n~sing homes in &Si@g a special Care tit are tie American Association Of Homes fOr

the Aging’s “Best Practices” document (10); the Massachusetts Akheimer’s Disease Research Center’s “Blueprint” document (287); the University

of Wisconsin-Milwaukee’s Center for Architecture and Urban Planning Research’s “Design Guide” (95); and the Alzheimer’s Association’s

“Guidelines for Dignity,’ released in July 1992. The forthcoming VA guidelines for special care units in VA medical centers will also be useful for

nursing homes that are trying to establish a special care unit.
42 ● Special Care Units for People With Alzheimer’s and Other Dementias

of special regulations. To OTA’s knowledge, no

State has created a process for waiving regulations

that interfere with innovation in special care units. A

few States have provided grants to nursing homes

and other facilities to create model special care units.

In at least one of these States, the State’s own

regulations made it difficult for some of the facilities

that received the grants to implement the features

they considered appropriate for individuals with

dementia, thus defeating the purpose of the grants. If

special care units are to fulfill the societal objective

of developing better methods of care for nursing

home residents with dementia, policies to allow and

encourage innovation must receive at least as much

attention as methods to regulate and control the

units.

In addition to a waiver process, several other

methods to allow and encourage innovation in

special care units are discussed in chapter 6. Some

of the methods pertain primarily to special care

units, e.g., providing training materials and programs to inform surveyors and others about problems in the care of nursing home residents with

dementia and the importance of developing alternate

approaches to their care. Other methods pertain to all

residential facilities for older people, e.g., simplifying the process for obtaining approval of new design

or other features, eliminating conflicts and inconsistencies in the requirements of different agencies and

regulatory codes, and including in any new regulations an explicit statement of the purpose of each

requirement; such a statement would provide government officials with a basis for allowing innovations that meet the purpose, if not the precise

stipulations, of the requirement.

Fire safety regulations and interpretations of fire

safety regulations are often cited as limiting the use

of innovative physical design features in special care

units. A conference or invitational meeting jointly

sponsored by the Alzheimer’s Association, the

National Fire Protection Association, and the Federal Government would be a valuable first step in

delineating this problem and identifying possible

solutions.

Implications for Reimbursement for

Special Care Units

Although most special care unit operators report

that it costs more to create and operate a special care

unit than a nonspecialized nursing home unit, some

special care unit operators disagree. As noted earlier,

the cost of new construction or remodeling to create

a special care unit varies greatly for different units.

Ongoing operating costs also vary. This variation in

costs provides little justification for an across-theboard increase in government reimbursement for

care in special care units.

Ninety percent of government-funded nursing

home care is paid for by Medicaid (250). Medicaid

reimbursement for nursing home care varies in

different States. It is low in many States and very low

in some States. High-quality nursing home care for

individuals with dementia probably costs more than

Medicaid pays in these States, regardless of whether

the care is provided in a special care unit or a

nonspecialized unit. High-quality nursing home care

for individuals with other diseases and conditions

probably also costs more than Medicaid pays in

these States. To improve quality of care, it may be

necessary to increase Medicaid reimbursement for

all nursing home care in these States. In the context

of this OTA report, however, the question is whether

reimbursement should be increased differentially for

special care units.15

The results of two studies cited earlier indicate

that average staff time and therefore the average cost

of care is higher for residents with dementia in

special care units than in nonspecialized nursing

home units (143,413). If future studies confirm this

finding, one could argue that government reimbursement should be increased differentially for care in

special care units. If the higher average cost of care

in special care units is not associated with better

resident outcomes, however, increasing government

reimbursement will raise government expenditures

and create financial incentives for the establishment

of more special care units without necessarily

improving the care available for individuals with

dementia----dearly not a desirable result. On the

other hand, if the higher average cost of care in

15 Arelat~but~erentquestiOn is whethergovernment reimbursement should be increased differentially for nursing home residents witi dementk

vs. nondemented residents in any nursing home unit. Two studies have found that certain types of residents with dementia (i.e., those who do not have

severe impairments in activities of daily living or extensive medical care needs) use more staff time and therefore more of a nursing home’s resources

than nondemented residents who have the same impairments and medical care needs (16,144). Given these findings, it would be reasomble for

government to differentially increase reimbursement for these types of residents with dementia.
Chapter 1--Overview and Policy Implications ● 43

special care units is associated with better outcomes

for individuals with dementia, policymakers will be

faced with a difficult question of values, since

increasing government reimbursement for the care

of demented and nondemented residents in nonspecialized units would probably produce better outcomes for those individuals as well.

In the past, reimbursement for nursing home care

inmost State Medicaid programs was based on a flat

rate system that paid nursing homes at the same rate

for each of their Medicaid-eligible residents, regardless of differences in the resources required for each

individual’s care. As of 1990, 19 State had switched

to case-mix systems to determine the level of

Medicaid reimbursement for nursing home care

(51). Case-mix systems are intended to match the

level of reimbursement for individual residents to

the resources used and therefore the cost of their care

(142). To implement an increase in government

reimbursement for care in special care units probably would involve more complex mechanisms in

States with case-mix vs. flat rate reimbursement

systems. Such an increase is not indicated, however,

unless and until there is better evidence than is

currently available that special care units improve

resident outcomes.

LEGAL AND ETHICAL ISSUES IN

SPECIAL CARE UNITS

Because of the cognitive impairments of special

care unit residents, difficult legal and ethical issues

arise in connection with many aspects of their care.

These issues are not unique to special care units, but

they tend to be magnified in special care units

because of the concentration of individuals with

dementia and the likelihood that they are in the later

stages of their illness and at least moderately

cognitively impaired.

Many of the difficult legal and ethical issues in the

care of individuals with dementia have been analyzed at length in three previous OTA reports

(457,458,459) and in a supplement to The Milbank

Quarterly based on OTA contract documents (496).

These issues are: criteria and procedures for determining an individual’s decisionmaking capacity;

methods of enhancing decisionmaking capacity;

competency determinations; criteria and procedures

for designating a surrogate decisionmaker; rights

and responsibilities of family members as surrogate

decisionmakers; criteria for surrogate decisions;

guardianship and conservatorship; decisions about

financial matters, use of services, and medical care

in the end of life; advance directives; the role of

ethics committees; risk taking and professional and

provider liability; and the ethical aspects of resource

allocation. Other agencies and individuals have also

written extensively about many of these issues.

This section describes some of the particularly

troublesome legal and ethical issues that arise with

respect to three aspects of the care of individuals

with dementia in special care units: locked units,

admission and discharge, and informed consent for

research participation. These issues and many of the

issues noted above require further clarification and

analysis as they apply to special care units.

The 1991 report of the Advisory Panel on

Alzheimer’s Disease includes a section on values

(2), and the panel is working on a report on legal

issues in the care of individuals with dementia (450).

The panel’s 1991 report discusses value differences

and potential value conflicts among the four main

constituencies involved in the care of individuals

with dementia: the individuals, their families, formal

service providers, and the public. Although not

focused on special care units, the panel’s analysis of

these value differences and potential value conflicts

is relevant to some of the most difficult ethical

questions that arise in special care units, e.g.,

questions about whose interests should be given

precedence in defining the goals of care, making

day-to-day decisions about care, and selecting the

outcomes to be studied in special care unit research.

In each of these areas, nondemented nursing home

residents constitute an important fifth constituency

whose interests must be considered.

Issues With Respect to Locked Units

At least three-quarters of existing special care

units have an alarm or locking system to keep

residents from leaving the unit unescorted or without

staff knowledge. Probably at least half of these units

are locked, although the exact proportion is not

known and undoubtedly varies from State to State.

People’s attitudes about locked special care units

differ (20,178). Some people regard locked units as

a way of providing greater freedom and autonomy

for individuals with dementia who otherwise might

be physically restrained or medicated to keep them

from wandering away from the unit. At the other

extreme, some people regard locked units as a form
44 ● Special Care Units for People With Alzheimer’s and Other Dementias

of involuntary confinement that restricts freedom

and autonomy and violates the civil rights of

individuals with dementia. Some people consider

locked units a necessary placement option, whereas

others consider them unnecessary and argue that

wandering residents can be managed effectively in

an unlocked unit with an alarm system.

People distinguish in various ways between

locked units they regard as acceptable and locked

units they regard as unacceptable. Some people

regard locked units that provide adequate staff and

activities as acceptable and locked units that do not

provide these features as unacceptable. Likewise,

some people regard as acceptable locked units that

have direct access to an outdoor area, such as an

enclosed courtyard or garden, where residents can

wander freely (although they are still confined),

whereas they regard as unacceptable locked units

that do not have such an outdoor area. It is unclear

whether these differences are important from a legal

or an ethical point of view.

Some people also distinguish between locked

units and units that are not locked but have some

other method of keeping residents from leaving the

unit, e.g., camouflaging the exit doors or using a type

of doorknob that most people with dementia cannot

figure out how to open. Again, although some

people regard these as distinct alternatives, it is

unclear whether the distinction is important from a

legal or an ethical point of view.

Units that are not locked but have another method

of keeping residents from leaving the unit are often

referred to as secure, secured, protected, or protective units. These terms are also used—sometimes as

euphemisms-for the term locked. This semantic

problem makes it difficult for people to communicate clearly about the legal and ethical issues raised

by various methods of keeping residents from

leaving a special care unit.

Some States prohibit locked nursing home units

or classify them in a different regulatory category

than unlocked units.16 At least one State official has

argued that locked units constitute physical restraints in the context of OBRA regulations and thus

require ongoing efforts to move the residents to a

less restrictive environment (85).

Families often worry about the safety of a person

with dementia who wanders. Anecdotal evidence

suggests that one thing some families are looking for

in a special care unit is assurance that the person will

be safe. They may prefer a locked unit for this

reason. On the other hand, some families may be

very reluctant to place their relative with dementia in

a locked unit.

The effect of locked units on the residents is

unclear. One study compared the behavior of 22

special care unit residents after they encountered a

locked vs. an unlocked exit door. The study found

that the residents were much less agitated after they

encountered the unlocked door (315). Some residents who encountered the unlocked door tested the

door several times-apparently to be sure it was

unlocked-and then decided not to go out.

Issues With Respect to Admission

and Discharge

Nursing home admission for a nondemented

person raises difficult legal and ethical issues, in part

because decisions about nursing home admission are

seldom autonomous (8,307). The admission of a

person with dementia to a special care unit may raise

even more difficult issues if the person is incapable

of an autonomous decision, the unit is locked, or

both.

Many commentators have debated the similarities

and differences between the admission of an elderly

person to a nursing home and the admission of a

psychiatric patient to a mental hospital.17 The two

situations are generally perceived as different enough

so that the legal protections that apply to mental

hospital admissions are considered unnecessary or

inappropriate for nursing home admissions. In the

case of locked units and individuals who lack

decisionmaking capacity, however, some people

believe additional legal protection is needed. One

possibility is a requirement for a legally appointed

guardian to give consent when a person who lacks

decisionmaking capacity is admitted to a locked

16 AS descfi~ in chapter 5, Colorado’s special care unit regulations apply OI@ to locked tit%

17 s=, fore~ple, Cohen, “CaringfortheMentallyIll Elderly Without DeFacto Commitments to Nursing Homes: The Right to the LeastR@rictive

Environment” (90); Moody, “Ethical Dilemmas in Nursing Home Placement” (307); and Spring, “Applying Due Process Safeguards” (420).
Chapter l-Overview and Policy Implications . 45

unit. Another possibility is a requirement for a civil

commitment in such cases.

These requirements would provide additional

protection for individuals with dementia and at the

same time create grave obstacles to special care unit

admission. Many families would be unwilling to

pursue either guardianship or a civil commitment,

and some individuals with dementia have no one to

initiate the necessary legal proceedings for them. If

better care is available in a special care unit, legal

requirements intended to protect potential special

care unit residents could be seen instead as denying

them access to better care. In fact, if better care is

available in a special care unit, any decision not to

admit an individual to a special care unit or to

discharge an individual from the unit could be seen

as denying the individual access to better care. Such

decisions could be regarded as discriminatory,

depending on the basis for the decision.

Some of the difficult legal and ethical issues with

regard to discharge involve a conflict between the

presumed right of the unit and its staff to determine

who will be cared for in the unit and the presumed

right of residents to remain in the unit if they or their

families so choose. A recent case in a Washington,

DC, nursing home illustrates one such conflict. In

this case, the family of a 91-year-old special care

unit resident challenged the facility’s decision to

discharge the resident from the unit (204). The

facility, which had a formal discharge policy,

wanted to move the resident to another unit because,

in the opinion of the unit staff, she could no longer

benefit from the special care unit. The family argued

that the resident, who had been in the same room for

six years, might experience ‘‘transfer trauma” as a

result of the move. The hearing examiner ruled that

the facility could not move the resident even though

it was clear that the resident did not meet the

facility’s criteria for placement on the unit.

A related issue pertains to special care units that

admit but later discharge individuals who have

behavioral symptoms which, in the opinion of the

unit staff, cannot be managed on the unit. Some

people believe special care units should be expected

to and should be able to care for individuals with

severe behavioral symptoms. They suggest that

special care units that discharge such individuals

may be violating their formal or informal admission

agreement with the residents and the residents’

families. On the other hand, the facility is liable for

injuries to other residents that may be caused by a

physically aggressive resident and responsible to the

other residents and their families for the overall

atmosphere in the unit, which may be negatively

affected by behaviorally disturbed residents.

Issues With Respect to Consent for

Research Participation

Special care unit researchers report that obtaining

informed consent for research participation by

special care unit residents is very difficult (79,411,436).

Most of the residents are not capable of giving

informed consent, and many residents’ families are

reluctant to give consent. As a result, studies that

require informed consent are likely to end up with

small samples that may not be representative of the

larger population of residents. To address this

problem, some special care unit studies have been

designed to avoid the need for informed consent. In

such studies, the researchers review the residents’

medical records, observe the residents, and talk to

the unit staff, but they do not interact directly with

the residents because to do so is perceived to require

informed consent. In contrast, record reviews, resident observation, and staff interviews are not perceived to require informed consent.

OTA is not aware of any published analyses of the

issue of informed consent for research participation

by special care unit residents. Much has been written

about this issue, however, as it pertains to nursing

home residents in general and individuals with

dementia in any setting. In addition, several researchers who are part of the Workgroup on Research and Evaluation of Special Care Units are

preparing a paper on ethical issues in special care

unit research that includes a discussion of informed

consent for research participation (495).

In the late 1970s and early 1980s, the National

Commission for the Protection of Human Subjects

in Biomedical and Behavioral Research and the

Presidents’ Commission for the Study of Ethical

Problems in Medicine and Biomedical and Behavioral Research studied and made recommendations

about informed consent for research participation by

nursing home residents (322,350). Other commenta-
46 . Special Care Units for People With Alzheimer’s and Other Dementias

tors have also made recommendations on this

issue. 18

All of these recommendations arise from serious

concerns about the potential exploitation of nursing

home residents as research subjects. They would

strictly limit the types of research that could be

conducted in nursing homes and the participation of

residents who are not capable of informed consent.

The National Commission for the Protection of

Human Subjects in Biomedical and Behavioral

Research recommended, for example, that research

involving nursing home residents should only be

allowed if it is relevant to a condition the subjects

suffer from, i.e., therapeutic research, and only if

appropriate subjects cannot be obtained in any other

setting. Cassel recommended that surrogates should

be formally designated to make decisions about

research participation on behalf of residents who are

not capable of informed consent (74).

None of these recommendations has been incorporated into law, and no special regulations on

informed consent for research participation by

nursing home residents are now in effect. OBRA-87

gives residents the right to refuse to participate in

research (463) but does not address the issue of

informed consent for research participation. Thus,

research in nursing homes is governed by the general

Federal law which allows consent for research

participation by a legally authorized representative

on behalf of an incompetent person. The term legally

authorized representative is not defined in the

Federal law.

In 1981, the National Institute on Aging sponsored a conference to explore the legal and ethical

issues with respect to informed consent for research

participation by individuals with dementia in any

setting (301). After the conference, a task force drew

up guidelines that recommend the use of noninstitutionalized subjects whenever possible (302). Federal

law requires institutions that receive Federal research funds to have an institutional review board

(IRB) to review research proposals involving human

subjects, and the task force’s guidelines cite several

criteria IRBs could use to evaluate the informed

consent procedures to be used in a given study. The

guidelines point out that the greater the risks posed

by a study and the less likely an individual subject

will benefit directly, the more stringent the informed

consent procedures should be. These guidelines are

not part of any official regulations, however.

Researchers generally turn to a nursing home

resident’s family to obtain consent for research

participation. It is assumed the family’s decision

will reflect the wishes and best interests of the

resident. The one published study OTA is aware of

that has addressed families’ decisions about research

participation by an elderly relative casts doubt on

that assumption. The researchers asked the families

of 168 nursing home residents with dementia to

consent to the residents’ participation in a low-risk

study of urinary catheters (480). About half the

families consented. Fifty-five of the families said

they believed their relative would not consent to

participate in the study, but17ofthe55(31 percent)

consented anyway. Twenty-eight of the families said

they would not choose to participate in the study

themselves, but 6 of the 28 (20 percent) consented

for their relative with dementia to participate.

The preliminary findings of a similar study being

conducted by researchers at the University of

Chicago are more positive. As of the spring 1992, the

researchers had interviewed 100 noninstitutionalized individuals with mild to moderate dementia and

their family caregivers (395). The individuals with

dementia were asked whether they would participate

in several hypothetical, high- and low-risk medical

studies. The family caregivers were asked three

questions: whether they would consent for their

relative with dementia to participate in the studies,

whether they thought their relative would consent to

participate, and whether they would be willing to

participate themselves. Preliminary findings from

the study show discrepancies between the responses

of the individuals with dementia and their family

caregivers, but the family caregivers generally have

not volunteered their relative with dementia for

high-risk studies (395). In fact, the caregivers have

been less willing than the individuals with dementia

to consent to the individuals’ participation in highrisk studies. On the other hand, the family caregivers

have been more willing than the individuals with

dementia to consent to the individuals’ participation

in the low-risk studies.

18 see, for example, Annas Wd GkMM, “Rules for Research in Nursing Homes” (13); Cassel, “Research in Nursing Homes: Ethical Issues” (73);

Cassel, “Ethical Issues in the Conduct of Research in Long Term Care” (74); and Dubler, “Lcga.1 Issues in Research on Institutionalized Demented

Patients” (122).
Chapter l-Overview and Policy Implications ● 47

Numerous studies that have used hypothetical

scenarios to compare treatment decisions by elderly

individuals and their families have found discrepancies between their responses (119,340,404,449,45 1,

523). It has been suggested that family members

would be more likely to make a treatment decision

the way their elderly relative would make it if they

were specifically instructed to do so, and the

findings of one study support that suggestion (449).

Even when families are asked specifically to make

a decision the way their elderly relative would make

it, however, the decisions are not always the same

(404,449).

If the necessary descriptive and evaluative research is to be conducted in special care units,

informed consent procedures must be devised that

will protect the residents from exploitation and at the

same time allow the use of research methods that

require informed consent, e.g., methods that involve

direct interaction with the residents. Some commentators have suggested the use of a durable power of

attorney for this purpose (13,302). With a durable

power of attorney, a person who is still capable of

making decisions for himself or herself can designate someone to make decisions in the future when

he or she is no longer capable. The problem with this

approach is that most special care unit residents

probably are not capable of executing a valid durable

power of attorney, and many will not have executed

a durable power of attorney for research participation at an earlier time when they were capable of

doing SO.

Some special care units now require individuals

with dementia to have a durable power of attorney

for health care decisions prior to their admission to

the unit. Anecdotal evidence indicates that in some

cases, these documents are being executed by

individuals who are not capable of making decisions

for themselves (156). The same problem could arise

with a durable power of attorney for research

participation.

Other approaches that have been proposed are the

use of a nursing home council (13), a multidisciplinary nursing home committee (23,74), or an independent advocacy group (29) to approve and oversee

nursing home research, including the procedures

that would be used to obtain informed consent.

Certainly if a panel were established to allow

waivers for special care unit research, as suggested

earlier in this chapter, that panel could perform these

functions.

Lastly, it must be noted that although most special

care unit residents probably are not capable of giving

valid informed consent, some are, and they should be

asked. Preliminary findings of the ongoing University of Chicago study of informed consent for

research participation by noninstitutionalized individuals with dementia show that many of these

individuals are able to provide helpful information

about their values and preferences, even though they

are not capable of giving valid informed consent

(395). Some and perhaps many special care unit

residents may also be capable of providing such

information.

OTHER ISSUES OF IMPORTANCE

TO NURSING HOME RESIDENTS

WITH DEMENTIA

Three additional issues are important for all

nursing home residents with dementia, including

special care unit residents. These three issues are

discussed briefly below.

The Availability of Physicians’ Services

Physicians’ services are essential for all nursing

home residents with dementia. Yet the special care

unit literature contains little discussion of the role of

physicians in special care units. With the exception

of the Tennessee regulations, the existing State

regulations for special care units do not mention

physicians except to require that a physician approve

a resident’s admission to the unit and document the

reason for the admission. Requirements for ongoing

physician care appear in other sections of these

States’ nursing home regulations and in the Federal

regulations for Medicare and Medicaid certification

of nursing homes. The lack of such requirements in

the special care unit regulations implies, however,

that physicians’ role is limited to admission-related

fictions.

Clearly, the appropriate role of physicians in the

care of nursing home residents with dementia goes

far beyond admission-related functions. One of the

most frequent complaints about the care of these

residents is that acute and chronic illnesses that

exacerbate their cognitive impairments and reduce

their functioning often are not diagnosed or treated.

Diagnosis and treatment of these illnesses will
48 ● Special Care Units for People With Alzheimer’s and Other Dementias

reduce excess disability and improve the residents’

quality of life, even if the conditions that cause their

dementia are incurable and progressive. Ongoing

physician involvement is essential to identify and

treat residents’ acute and chronic illnesses.

One stated objective of some special care units is

to get away from the ‘‘medical model” of care and

adopt a ‘‘social model’ instead. Semantics aside,

this objective is unrelated to the role of physicians,

who are as essential in a social as a medical model

of care (146). In special care units, as in nursing

homes generally, the physician may be a team

member rather than the team leader (226), but there

is no question about the need for initial and ongoing

physician involvement in the care of residents with

dementia in special care units and other nursing

home units.

The Availability of Mental Health Services

Many commentators have noted the lack of

adequate mental health services in nursing homes

(58,175,339,393). Although Alzheimer’s disease

and most of the other diseases that cause dementia

generally are not considered mental illnesses, their

manifestations include mental, emotional, and behavioral symptoms that may respond to behavior

management techniques, psychotropic medications,

and other mental health treatments. Psychiatrists,

psychologists, psychiatric nurses, psychiatric social

workers, and other mental health professionals with

expertise in the evaluation and treatment of these

symptoms seldom work in nursing homes.

The lack of adequate mental health services in

most nursing homes is attributable to several factors.

One factor is a lack of reimbursement. A second

factor is the IMD exclusion. As an optional Medicaid

benefit, States may choose to provide Medicaid

reimbursement for the care of individuals under age

22 or over age 65—but not individuals age 22 to

65—in an institution for mental diseases (IMD).

Medicaid regulations define an IMD as ‘‘an institution that is primarily engaged in providing diagnosis, treatment, or care of persons with mental

diseases, including medical attention, nursing care,

and related services’ (460). If a nursing home is

classified as an IMD, it loses Medicaid funding for

all its residents age 22 to 65. If the nursing home is

in a State that does not provide Medicaid reimbursement for care in IMDs, it loses Medicaid funding for

all its residents. Because of a fear of being classified

as an IMD, some nursing homes choose not to

employ mental health professionals, not to provide

mental health services, or both (192,205).

Medicaid regulations cite 10 criteria to be used in

determining whether a facility is an IMD. No single

criterion is definitive; rather, the criteria are to be

used together to determine whether a facility’s

‘‘overall character is that of a facility established and

maintained primarily for the care and treatment of

individuals with mental diseases” (460). Two of the

criteria are troublesome to nursing homes that care

for individuals with dementia:

1)

2)

“The facility specializes in providing psychiatric/

psychological care and treatment. This may be

ascertained through review of patients’ records. It may also be indicated by the fact that

an unusually large proportion of the staff has

specialized psychiatric/psychological training

or by the fact that a large proportion of the

patients are receiving psychopharmacological

drugs” (460).

“More than 50 percent of all the patients in the

facility have mental diseases which require

inpatient treatment according to the patients’

medical records” (460).

The second criterion, often referred to as the “50

percent rule,” excludes residents with senility or

organic brain syndrome “if the facility is appropriately treating the patients by providing only general

nursing care. ” According to the regulations, residents with senility or organic brain syndrome are

excluded because these conditions “are essentially

untreatable from a mental health point of view’

(460). Residents with senility or organic brain

syndrome are not excluded from the 50 percent rule

“if the facility is treating these patients for the

effects of a mental disorder, as opposed to providing

general nursing and other medical and remedial

care” (460).

A third factor that may discourage the provision

of mental health services in nursing homes is

Preadmission Screening and Annual Resident Review (PASARR), a program mandated by OBRA-87

that requires States to: 1) screen all nursing home

applicants and nursing home residents to determine

whether they have mental illness or mental retardation, and 2) evaluate all those who are found to have

mental illness or mental retardation to determine

whether they need nursing home care and whether

they need ‘‘specialized services” for their mental
Chapter l-Overview and Policy Implications . 49

illness or mental retardation. Mentally ill and

mentally retarded nursing home applicants and

residents who are found in a PASARR evaluation

not to need nursing home care or to need “specialized services” must be placed elsewhere. Mentally

ill and mentally retarded nursing home residents

who have been in a nursing home for 30 months or

more can choose to remain in the nursing home even

if they are found not to need nursing home care or to

need “specialized services” (320).

The impact of PASARR on the availability of

mental health services in nursing homes is unclear

and probably differs from State to State. Anecdotal

evidence suggests that at least in some States,

PASAAR has had the same effect as the IMD

exclusion—that is, to cause some nursing homes not

to employ mental health professionals, not to

provide mental health services, or both, because of

a fear that if the facility employs mental health

professionals or provides mental health services, it

will be perceived as caring for mentally ill people

and therefore lose Medicaid funding.

The Federal regulations for Medicare and Medicaid certification of nursing homes include provisions

that would seem to require the involvement of

mental health professionals in assessing residents’

care needs and the provision of some mental health

services. 19 It is unclear how these provisions will be

interpreted and implemented.

The American Association of Retired Persons

(AARP) is currently funding a study of barriers to

mental health care in nursing homes (260). The

study, which will be completed in 1993, will provide

information about regulations, reimbursement, and

other factors that interfere with access to mental

health services by all nursing home residents,

including residents with dementia.

The Use of Psychotropic Medications

As noted earlier, a large proportion of nursing

home residents receive psychotropic medications,

and residents with dementia are more likely than

other residents to receive these medications. Psychotropic medications are frequently referred to in

the special care unit literature and elsewhere as

chemical restraints or pharmacological restraints.

The use of the word restraints in this context implies

that psychotropic medications are an undesirable

treatment option. This implication fits well conceptually with the growing concern about the overuse

and inappropriate use of physical restraints and

psychotropic medications in nursing homes. On the

other hand, many commentators have noted that

psychotropic medications are a valuable treatment

option for some individuals with dementia

(19,28,121,180,277,347,353,367,381,402,412). For

individuals with depressive or psychotic symptoms

or extreme agitation, psychotropic medications may

be the best treatment option. The important consideration in these instances is the selection of the right

medication, in the right dose, for the right indication.

Clearly, psychotropic medications should not be

used as a substitute for behavioral or environmental

interventions that may be as effective or more

effective and do not have the negative side effects

often associated with psychotropic medications.

Research is needed to determine the indications,

dosages, and long-term effects of various psychotropic medications. Referring to psychotropic

medications as restraints may create an atmosphere

in which individuals with dementia will not receive

medications that could significantly improve their

quality of life.

ALTERNATIVES TO SPECIAL

CARE UNITS

As noted at the beginning of this chapter, the

proliferation of special care units is occurring at the

same time as numerous other government and

nongovernment initiatives that are likely to improve

the care of nursing home residents with dementia or

provide alternatives to nursing home care for them.

This section briefly describes a few of these initiatives. Each of the initiatives offers an alternate way

of accomplishing one or more of the same objectives

as special care units.

Initiatives To Reduce The Use of Physical

Restraints for All Nursing Home Residents

OBRA-87 and related legislation require nursing

homes to reduce their use of physical restraints. Prior

to and since the implementation of the OBRA

regulations, many organizations have developed

training programs and materials to help nursing

19 see sectio~ 483.20@j(2)(lll) and (vii), 483.20(f), and 483.45(a), Federal Register, Sept. 9, 1991 (463).

zo s=, for example, Rader, “The JoyM Road to Restraint- Free Care” (360).
50 ● Special Care Units for People With Alzheimer’s and Other Dementias

homes reduce the use of physical restraints.20 The

National Institute on Aging has funded a 3-year

clinical trial on reducing the use of physical restraints in nursing homes, and the Food and Drug

Administration (FDA) has increased its surveillance

of restraining devices (327).21

In 1989, the Kendal Corp. in Pennsylvania

initiated “Untie the Elderly, ” a national program to

create ‘restraint-free’ nursing homes. In December

1989, the corporation and the Senate Special Committee on Aging cosponsored a policy-oriented

symposium on reducing the use of physical restraints in nursing homes. The corporation also

sponsors workshops to help nursing homes reduce

their use of physical restraints and publishes a

newsletter that describes the successful efforts of

some nursing homes to decrease restraint use.

In 1991, the Jewish Home and Hospital for Aged

in New York City initiated a three and a half year

“Restraint Minimization Project, ” with funding

from the Commonwealth Fund. The project is

intended to demonstrate ways of reducing restraint

use in nursing homes. It is being implemented in 14

nursing homes in 4 States.

Nursing homes often use physical restraints

because they are afraid of being sued for fall-related

injuries to residents who are not restrained. Yet

historically, there has been a greater risk of facilities

being sued for overuse or misuse of restraints

(196,224). By establishing a clear standard of care,

OBRA requirements for reduced use of physical

restraints will increase the legal risks associated with

their overuse or misuse.

As noted earlier, several studies have found that

on average physical restraints are used far less in

special care units than in other nursing home units.

It is unclear whether this difference will be sustained

as the implementation of OBRA-87 creates pressure

on all nursing homes to reduce their use of physical

restraints. The 481 nursing homes that responded to

a 1991 surwey conducted by the American Association of Homes for the Aging reported that the

proportion of their residents who were physically

restrained had decreased from an average of 43

percent in 1989 to an average of 23 percent in 1991

(9). Only 13 percent of the nursing homes reported

having instituted a restraint reduction program

before 1989, the year the pertinent OBRA regulations went into effect.

Dementia Training Programs for Nursing

Home Staff Members

One of the most frequently cited problems in the

care of nursing home residents with dementia is lack

of staff knowledge about dementia. Many organizations and individuals have developed training programs and materials to address this problem. One

video training program, ‘‘Managing and Understanding Behavior Problems in Alzheimer’s Disease

and Related Disorders,’ was funded by the National

Institute on Aging and has 10 training modules, each

focused on a different behavioral symptom (439).

Other programs and materials include the following:

●

●

●

●

●

●

a training manual developed by the St. Louis

Chapter of the Alzheimer’s Association (39);

a training manual and tape series developed by

the Wisconsin Alzheimer’s Information and

Training Center (509);

a video training program developed by Community Services Institute, Inc. (102);

a training guide and resource manual developed

for the New Jersey Department of Health (471);

a video training program developed by Church

Home and distributed by the American Association of Homes for the Aging (86); and

a training manual written by Lisa Gwyther and

distributed by the Alzheimer’s Association and

the American Health Care Association (165).

These training programs and materials are likely

to improve the care of nursing home residents with

dementia generally.

In 1987, the Alzheimer’s Family Center, Inc. of

San Diego, CA, established a School of Dementia

Care which trains and certifies health care professionals to work with individuals with dementia

(422). In 1991, the Federal Government provided

funding to the center through the Job Training and

Partnership Act to train ‘‘Certified Nursing Assistant Alzheimer Care Specialists’ to work with

individuals with dementia in nursing homes, adult

day centers, and other settings (324).

zo SW, for example, Rader, “The Joyful Road to Restraint- Free Care” (360).

21 ~J~e1992,he~ApropoSedanewfietit~o~dr~fie ~be~g of physical res~ts. me req~ed label wo~d include directions fOr use

of the restraints, a warning of potential hazards, and the phrase prescription only.
Chapter 1--Overview and Policy Implications ● 51

Specialized Programs for Residents With

Dementia in Nonspecialized Nursing

Home Units

Instead of or in addition to a special care unit,

some nursing homes have specialized programs for

residents with dementia in nonspecialized units. It is

unclear how many nursing homes have such programs. In response to a 1991 survey of all U.S.

nursing homes with more than 30 beds, 13 percent

of the 1463 nursing homes that said they had a

special care unit or program for their residents with

dementia reported that the program was not in a

physically separate part of the facility (247). Thus,

it is likely that at least several hundred nursing

homes have specialized programs.

Some nursing homes have specialized day care or

activity programs.

22 One facility established a‘ wanderer’s lounge” where specialized activities are

provided several hours a day for 15 to 20 demented

residents of the facility’s nonspecialized units (299).

Rovner established an experimental special care

program for demented residents of nonspecialized

units in one Maryland nursing home (387). The

program was intended to duplicate the essential

components of an apparently effective special care

unit described earlier in this chapter and in chapter

4 (392). The special care program consisted of

weekly visits to each resident by a psychiatrist and

a nurse with the purpose of identifying residents’

cognitive impairments, treating psychiatric symptoms, reducing medication side effects, maintaining

residents’ physical health, reducing the use of

physical restraints, and increasing the residents’

participation in activities (387). Five hours of

specialized activities were provided daily. The

special care program is being evaluated. Its impact

will be compared with the impact of the special care

unit described earlier to determine their relative cost

and effectiveness.

Specialized Living Arrangements Outside

Nursing Homes

Outside nursing homes, special care units and

other specialized living arrangements for people

with dementia have been established in residential

care facilities, assisted living facilities, mental

hospitals, and other settings. Three of the best

known special care units in the United States are in

residential care facilities:23

. the Alzheimer’s Care Center in Gardiner, ME

(303);

. the Corinne Dolan Alzheimer’s Center at Heather

Hill in Chardon, OH (317), and

. Wesley Hall in the Chelsea United Methodist

Retirement Home in Chelsea, MI (105).

In many discussions about special care units, no

distinction is made between these three units and

other model special care units in nursing homes.

From a public policy perspective, however, there are

important differences between special care units in

residential care facilities and special care units in

nursing homes. Residential care facilities are much

less regulated than nursing homes. The Federal

Government does not regulate residential care facilities.24 States license various types of residential care

facilities (251), but some types of residential care

facilities are not licensed in each State, and the

licensing requirements, where they exist, are less

comprehensive and far less stringent than the

licensing requirements for nursing homes.25

Since special care units in residential care facilities are not subject to the same kinds of regulatory

requirements as special care units in nursing homes,

they are able to implement innovative physical

design features, staffing arrangements, and patient

care practices that may be difficult or impossible to

implement in a nursing home. Because of the

minimal regulatory requirements, special care units

22 S= for exmple, Clentiel and Fleishell, ‘An Akheimer Day Care Center for Nursing Home Patients” (89); lkmczqk~d Ba*, “Adven~e

Program” (173); Johnson and Chapmaq “Quest for Life” (21 1); and Sawyer and Mendelovitz, “A Management Program for Ambulatory

Institutionalized Patients With Alzheirner’s Disease and Related Disorders” (400).

23 Thetermresz2ientia/ carefacWies refers to a variety Of hvtig arrangements that provide room and board and some degree of protective supervision.

Examples are retirement homes, homes for the aged, group homes, and adult foster homes.

24 me o~y F~w~ role ~ the re~ation of residenti~ Cme f~ilities is throughthe Keys Amendmentto the socialsecurity Act. The Keys

Amendment requires States to certify to the U.S. Department of Health and Human Semices that all residential care facilities in which a significant

number of Supplemental Security Lncome (SS1) recipients reside meet appropriate standards. A 1989 GAO report found that the department does little

more than record the receipt of the certifications and that only four States were submitting the required certifications (453).

25 Reswch Tfi~gle ~ti~te fi NoM c~ol~ is conducfig a Smdy for the us. Dep~ent Of Health ~d H~ Services of State licensing

requirements and other State regulations for residential care facilities. In addition to a 50- State review of existing regulations, the study will compare

the quality of care provided in licensed and urdicensed residential care facilites in 10 States.
52 ● Special Care Units for People With Alzheimer’s and Other Dementias

in residential care facilities usually cost less to

construct and operate than special care units in

nursing homes. As a result, they usually charge less

than nursing homes.

Despite these advantages, there are serious potential problems with special care units in residential

care facilities. Anecdotal evidence suggests that

most of these units are established outside a nursing

home in order to avoid nursing home regulations

(273). This may be entirely appropriate if the intent

is to avoid regulatory requirements that restrict the

use of physical design or other features the unit

operator believes will benefit individuals with dementia; it is clearly inappropriate if the intent is to

avoid regulatory requirements that are important for

the safety or well-being of individuals with dementia. Many government reports have documented

widespread abuse, exploitation, and neglect of

elderly and other individuals in residential care

facilities. 26 Given the vulnerability of individuals

with dementia, the proliferation of special care units

in minimally regulated residential care facilities

raises the prospect of severely deficient care.

Specialized living arrangements for people with

dementia are also being developed in assisted living

facilities. The term assisted living facilities refers to

living arrangements in which a variety of supportive

services are available to residents who each have a

separate apartment that is lockable and has its own

kitchen (501). Some people consider assisted living

facilities a type of residential care facility, and other

people consider them a separate category of living

arrangements. They are less likely to be regulated

than other residential care facilities and therefore

probably present greater potential for deficient care.27

Psychogeriatric units in public and private mental

hospitals often serve elderly individuals with dementia as well as elderly individuals with acute and

chronic mental illnesses, but some mental hospitals

have units that serve only individuals with dementia.

Such units exist, for example, in two Virginia state

hospitals (56,252).

Lastly, some organizations have developed or are

developing campus-like settings that provide a

variety of living arrangements and other specialized

services for individuals with dementia.28 The living

arrangements available in such settings may include

apartments for an individual with dementia and his

or her spouse, residential care or assisted living

units, and nursing home units.

In addition to programs intended to improve the

care of nursing home residents with dementia or

provide alternate residential care options for them,

many services have been developed to assist individuals with dementia who are living at home and their

caregivers. These services include adult day care,

respite care, specialized hospice programs, and a

variety of other in-home and community-based

services. All these programs and services provide

alternatives to special care units for some people

with dementia. Government policies for special care

units should be considered in relation to the full

range of care options for these individuals.

CONCLUSION

A large number of nursing home residents in the

United States have dementia--637,600 to 922,500

according to national surveys-and almost all people with dementia will probably spend some time in

a nursing home in the course of their illness. These

individuals may receive inappropriate care that will

result in excess disability and severely reduced

quality of life.

Special care units of various types have been

developed and are proliferating in response to this

problem. Special care units promise to provide better

care for individuals with dementia than these individuals would receive in other nursing home units.

It is unlikely all nursing home residents with

dementia will ever be cared for in special care units,

but methods of care developed in special care units

could eventually be implemented in other nursing

home units as well.

26 See, forexample, “Board and Care Homes in America: A National Tragedy” (455), and ‘Board and Care: LnsufflcientAssurances ThatResidents’

Needs are Identified and Met” (453).

27 Gegonhas developed special regdat.ions for assisted living facilities. In 1987, the State Medicaid progran ~gan pa@g for cm in designated

assisted living facilities for individuals who are eligible for Medicaid-funded nursing home care (501). One of these facilities serves individuals with

dementia (504).

28 s=, for e~ple, Stein Gerontological ceut~, “Pathways: Program Development Plan” (423).
Chapter L-Overview and Policy Implications ● 53

Better methods of care for nursing home residents

with dementia are likely to benefit not only those

residents, but also their families, the nursing home

staff members who take care of them, and other

nursing home residents who are not demented.

Families will benefit because they will be more

satisfied with the care provided for their relative

with dementia and therefore may feel less guilty

about having placed the individual in a nursing home

and less anxious about his or her well-being. Nursing

home staff members will benefit because the residents are likely to be easier to manage. Nondemented nursing home residents will benefit because

the behavioral and other symptoms of residents with

dementia are often disturbing to them; better methods of care are likely to reduce the incidence of these

symptoms and thus improve the quality of the

nondemented residents’ lives.

The number of nursing homes that have a special

care unit is increasing rapidly. OTA estimates that

10 percent of all U.S. nursing homes had a special

care unit in 1991.

Existing special care units vary greatly in virtually

all respects. Although experts agree about the

theoretical principles of specialized dementia care,

the theoretical principles are implemented differently in different special care units and are not

implemented at all in some special care units, and

there is considerable disagreement about the particular features that are necessary in a special care unit.

Proponents of special care units make strong

claims about their effectiveness, but the available

research provides little support for the claims. Only

two of the six special care unit studies that used a

control group found any positive outcomes for

special care unit residents. Only one of the four

studies that measured the impact of a special care

unit on the unit staff members and only two of the

four studies that evaluated the effect of special care

units on the residents’ families found any positive

outcomes. None of these studies is definitive by

itself, but their combined findings are impressive

and suggest that we do not yet know exactly what

constitutes effective nursing home care for individuals with dementia.

Because of the diversity of existing special care

units, their rapid proliferation, and the widespread

perception that some special care units use the words

special care as a marketing tool and actually provide

no special services for their residents, there is strong

pressure to regulate special care units. On the other

hand, given the lack of agreement among experts

about the particular features that are necessary in a

special care unit and the lack of research-based

evidence of the effectiveness of special care units, it

is difficult to determine what regulations should say

beyond general statements about goals and principles and a listing of issues that require special

consideration in the care of residents with dementia,

e.g., staff training, environmental design, security,

activity programs, family involvement, and resident

rights.

Special care unit regulations are likely to discourage innovation by suggesting that we already know

what constitutes effective care for nursing home

residents with dementia. Regulations are also likely

to lock in for the future current beliefs about the

features that are important in special care units.

OTA concludes that the objective of improving

nursing home care for individuals with dementia

will be better served at present by initiatives to

develop greater knowledge and agreement about the

particular features that are important in the care of

nursing home residents with dementia than by the

establishment of regulations for special care units.

Some people argue that we cannot wait for the

results of such initiatives to develop special care unit

regulations. It is said that regulations are needed now

to protect individuals with dementia from poorquality care. In contrast, OTA concludes that OBRA87 provides a sufficient basis for censuring units that

provide poor-quality care, without any special regulations. It is also said that regulations are needed to

protect individuals with dementia and their families

from nursing homes that fraudulently claim to

provide special care but actually provide nothing

special for their residents. OTA concludes that

individuals with dementia and their families can be

better protected from these nursing homes by

initiatives that would: 1) make available guidelines

that describe the theoretical concepts and design and

other features that are believed to be important in

special care units, 2) make available information

about the characteristics of special care units in local

jurisdictions, and 3) require nursing homes to

disclose to families and others what is special about

their special care unit. As noted earlier, these

initiatives will not protect all potential special care

unit residents and their families from nursing homes

that provide no special services in their special care

unit. Neither will these individuals be protected by
54 . Special Care Units for People With A[zheimer’s and Other Dementias

regulations that require special care units to incorporate features that have not been shown to be

effective.

The potential of special care units to develop

better methods of care for nursing home residents

with dementia is exciting. That potential cannot be

realized without a greater commitment than currently exists to evaluation of the units and their

impact on residents, residents’ families, unit staff

members, and nondemented nursing home residents.

Such evaluation must be pursued with the recognition that some of the features that are currently

believed to be essential in special care units may not

be effective and that once effective methods of care

are identified, they may not be unique to individuals

with dementia.
Chapter 2

Nursing Home Residents

With Dementia:

Characteristics and Problems
Contents

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

PREVALENCE OF DEMENTIA IN NURSING HOMES . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57

Dementia-Related Diagnoses of Nursing Home Residents . . . . . . . . . . . . . . . . . . . . . . . . . 58

Factors That Could Change the Future Prevalence of Dementia in Nursing Homes . . . 60

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .61

CHARACTERISTICS OF NURSING HOME RESIDENTS WITH DEMENTIA . . . . . . 61

Age, Gender, and Race . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

Impairments in Activities of Daily Living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

Symptoms of Depression and Other Psychiatric Conditions . . . . . . . . . . . . . . . . . . . . . . . . 63

Behavioral Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64

Typologies of Nursing Home Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64

Factors That Could Change the Types of Individuals With Dementia in Nursing Homes. 68

summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .69

PROBLEMS IN THE CARE PROVIDED FOR NURSING HOME RESIDENTS

WITH DEMENTIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Complaints and Concerns About the Care Provided for Individuals With

Dementia in Many Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70

Use of Psychotropic Medications and Physical Restraints . . . . . . . . . . . . . . . . . . . . . . . . . . 72

Negative Consequences for Residents With Dementia, Their Families, Nursing

Home Staff Members, and Nondemented Nursing Home Residents . . . . . . . . . . . . . . . 75

Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . 77

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 78

Tables

Table Page

2-1. Distribution of Demented and Nondemented Nursing Home Residents by Age,

Gender, and Race, United States, 1985 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62

2-2, Impairments in Activities of Daily Living in Demented and Nondemented Nursing

Home Residents, United States, 1985 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

2-3. Distribution of Psychiatric Symptoms in Demented and Nondemented Nursing

Home Residents, United States, 1987 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63

2-4. Characteristics of Six Types of Nursing Home Residents, New York State . . . . . . . . 66

2-5. Frequently Cited Complaints and Concerns About the Care Provided for Nursing

Home Residents With Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71
Chapter 2

Nursing Home Residents With Dementia:

Characteristics and Problems

INTRODUCTION

At least half of all nursing home residents have

dementia. Special care units have been developed

primarily in response to perceived problems in the

care they receive in many nursing homes. The units

are intended to offer better care for these individuals.

This chapter provides information about nursing

home residents with dementia. It begins with a

review of the available data on the number and

proportion of nursing home residents who have

dementia, the proportion who have a diagnosis of

dementia, and the factors that could change the

future prevalence of dementia in nursing homes. The

second section of the chapter discusses the characteristics of nursing home residents with dementia

and compares the characteristics of demented and

nondemented residents. This comparison is useful in

. . thinking about what is different about residents with

dementia and what should be special about their

care.

The third section of the chapter discusses problems in the care provided for residents with dementia

in many nursing homes and the impact of the

problems on the residents, their families, the nursing

home staff members, and nondemented nursing

home residents. These problems are the primary

reason for the development and proliferation of

special care units. They explain to a great degree

why there is a market for special care units. They are

also the rationale for many of the specific physical

design features and patient care practices recommended for special care units.

Overuse and inappropriate use of psychotropic

medications and physical restraints are problems for

all nursing home residents, but several studies

discussed in this chapter show nursing home residents with dementia are more likely than nondemented nursing home residents to receive psychotropic medications and to be physically restrained. While overuse and inappropriate use of

psychotropic medications and physical restraints are

major concerns in themselves, they are also perceived by special care unit advocates and others as

manifestations of the failure of most nursing homes

to use more appropriate methods of care—

particularly more appropriate methods of responding to behavioral symptoms. Reduction in the use of

psychotropic medications and physical restraints by

the substitution of more appropriate methods of

responding to residents’ behavioral and other symptoms is a primary objective of many special care

units.

PREVALENCE OF DEMENTIA IN

NURSING HOMES

The 1985 National Nursing Home Survey conducted by the National Center for Health Statistics

identified 19,100 nursing homes in the United States

(467). The 19,100 nursing homes had 1,491,400

residents and a total bed capacity of 1,624,200.1

Estimates of the prevalence of dementia in

nursing homes vary, but data from several sources

show that at least half of all nursing home residents

have dementia. Data from the 1985 National Nursing Home Survey, a large-scale survey of a nationally representative, stratified random sample of all

nursing homes, indicate that 696,800 nursing home

residents--47 percent of all nursing home residents—

had senile dementia or chronic or organic brain

syndrome (469). The terms senile dementia and

chronic or organic brain syndrome were used in the

past and are sometimes still used for the clinical

syndrome referred to in this report and generally as

1 The term nursing home was defined in the 1985 National Nursing Home Survey as a facility that has three or more beds and provides nursing care,

personal care (e.g., help with bathing, walking, eating, using the toilet, or dressing) and/or supervision. Another mtional survey, the 1986 Inventory of

Imng-RxmCare Places, gathered information about nursing homes and residential carefaciZities, such as homes for the aged, tbat provide personal care

but do not routinely provide nursing care (466). By comparing data from the 1985 National Nursing Home Survey and the 1986 Inventory of Img-lkrm

Care Places, the National Center for Health Statistics concluded that 2200 of the facilities identified as nursing homes in the 1985 National Nursing Home

Survey were actually residential care facilities (467); thus, the 19,100 facilities identified by the 1985 National Nursing Home Survey included 16,900

nursing homes with a bed capacity of 1,558,400 and 2200 residential care facilities with a bed capacity of 71,000. Despite this determina tioq the data

on nursing home residents derived from the 1985 National Nursing Home Survey is based on the 1,491,400 residents of the 19,100 facilities, and this

OTA report uses those figures.

–57–
58 ● Special Care Units for People With Alzheirner’s and Other Dementias

dementia. These terms include dementia caused by

Alzheimer’s disease.

The figures from the 1985 National Nursing

Home Survey on the number and proportion of

nursing home residents with senile dementia or

chronic or organic brain syndrome were derived

from the residents’ diagnoses, as recorded in their

medical records, and the judgments of members of

the nursing staff at each nursing home surveyed.

Staff members were shown a list of 10 mental

conditions, including senile dementia and chronic or

organic brain syndrome, and asked whether the

residents in the survey sample had any of the

conditions (467). Staff members based their answers

on their knowledge of the residents and information

in the residents’ medical records, including but not

limited to the residents’ recorded diagnoses.

Other data from the 1985 National Nursing Home

Survey indicate that 922,500 nursing home residents—

62 percent of all 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 (467).

These figures were also derived from interviews

with members of the nursing staff at each nursing

home and reflect the staff members’ judgments

based on their knowledge of the residents and

information in the residents’ medical records.

The 1987 National Medical Expenditure Survey,

another large-scale survey conducted by the Agency

for Health Care Policy and Research, also included

a nationally representative sample of nursing homes.

The survey found that 637,600 nursing homeresidents42 percent of all nursing home residents—had senile

dementia or chronic or organic brain syndrome

(237). These figures were derived from interviews

with nursing home staff members. The staff members were instructed to base their responses on

information in the residents’ medical records, including but not limited to the residents’ recorded

diagnoses.

As noted in chapter 1, dementia is a clinical

syndrome characterized by decline of cognitive

functions, including memory, in an alert individual.

To be accurate, a diagnosis of dementia and/or the

disease or condition that is causing the dementia

must be based on a comprehensive patient evaluation using accepted diagnostic criteria. Estimates of

the prevalence of dementia in nursing homes derived

from the results of interviews with nursing home

staff members may not be accurate because staff

members’ judgments about residents’ mental status

are not necessarily based on such an evaluation.

Very few studies have used comprehensive diagnostic evaluations to determine the prevalence of

dementia in nursing homes, but the results of three

studies that have used such evaluations suggest more

than half of all nursing home residents have clinically diagnosable dementia. Based on comprehensive medical and psychiatric evaluations of a random sample of 50 residents of a 180-bed nursing

home in Maryland, Rovner et al. concluded that 78

percent of the residents had clinically diagnosable

dementia (390). Based on similar evaluations of 65

of the 68 residents of a nursing home in Iowa,

Chandler and Chandler concluded that 72 percent of

the residents had clinically diagnosable dementia

(82). Lastly, based on similar evaluations of 454

individuals admitted to 8 nursing homes in Maryland between February 1987 and March 1988,

Rovner et al. concluded that 67 percent of the

individuals had clinically diagnosable dementia

(389). The results of these three studies cannot be

generalized with certainty because of the small

number of nursing homes involved, but they suggest

the findings of the 1985 National Nursing Home

Survey and the 1987 National Medical Expenditure

Survey underestimate the true prevalence of dementia in nursing homes.

Dementia-Related Diagnoses of

Nursing Home Residents

Although large proportions of nursing home

residents were said to have senile dementia or

chronic or organic brain syndrome by the nursing

home staff members interviewed for the 1985

National Nursing Home Survey and the 1987

National Medical Expenditure Survey and even

larger proportions were found to have clinically

diagnosable dementia in the three studies just cited,

relatively few nursing home residents have a diagnosis of dementia in their medical records. In fact, one

of the frequent complaints about the care of nursing

home residents with dementia is that their dementia

is not carefully or accurately diagnosed and sometimes is not diagnosed at all (17,82,370,389,390,433).

Data from the 1985 National Nursing Home

Survey show that at the time of the survey, 16

percent of all residents had a recorded primary

diagnosis of dementia or of a disease or condition
Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems ● 59

that causes dementia. The 16 percent included 3

percent who had a primary diagnosis of Alzheimer’s

disease or another specified or unspecified degeneration of the brain (ICD-9-CM codes 331.0, 331.2,

and 331.9)2; 3 percent who had a primary diagnosis

of senile dementia or another organic psychotic

condition (ICD-9-CM codes 290-294), 9 percent

who had a primary diagnosis of organic brain

syndrome (ICD-9-CM code 310); and 1 percent who

had a primary diagnosis of senility without psychosis (ICD-9-CM code 797) (467).

Of the nursing home residents who were said by

members of the nursing staff at each facility to have

either senile dementia or chronic or organic brain

syndrome, about one-third had a recorded primary

diagnosis of any mental disorder, including 7

percent who had a primary diagnosis of senile

dementia or another organic psychotic condition

(ICD-9-CM codes 290-294) and 19 percent who had

a primary diagnosis of organic brain syndrome

(ICD-9-CM code 310) (467). Of the residents who

were said by members of the nursing staff to be

disoriented or memory-impaired, 4 percent had a

primary diagnosis of senile dementia or another

organic psychotic condition, and 12 percent had a

primary diagnosis of organic brain syndrome.

Nursing home residents generally have several

diagnoses in their medical records. Considering all

the diagnoses listed in residents’ medical records,

the 1985 National Nursing Home Survey found 23

percent of the residents had any diagnosis of

dementia or of a disease or condition that causes

dementia (189). As noted earlier, the 1985 survey

found 47 percent of all residents had dementia. Thus

fewer than half of the residents with dementia had a

recorded diagnosis of dementia or a diagnosis of a

disease or condition that causes dementia. Moreover, most of those with a recorded diagnosis of

dementia had a general diagnosis, such as chronic or

organic brain syndrome. These general diagnoses

were widely used in the past but have been largely

replaced in most settings by more specific diagnoses

that identify the cause of an individual’s dementia,

e.g., Alzheimer’s disease or multi-infarct dementia.

There are many possible reasons why a nursing

home resident with dementia may not have a

recorded diagnosis of dementia or a diagnosis of a

disease or condition that causes dementia. One

possible reason is that the physician who determines

the person’s diagnoses is not aware of the person’s

dementia. A second possible reason is that although

the physician is aware of the person’s dementia, the

physician does not think the dementia is as important

as the person’s other medical conditions and therefore does not document it in the person’s medical

record. A third possible reason is that the physician

does not feel competent to diagnose the dementia. A

fourth reason is that in some States, Medicaid

policies restrict eligibility for Medicaid-funded nursing home care for persons with dementia (83). As a

result, physicians who want to help their patients

with dementia obtain Medicaid funding for nursing

home care may choose not to document the dementia

in the patients’ medical records. Lastly, many

nursing home administrators and staff are reluctant

to admit someone they believe will be difficult to

manage, and they tend to regard people with

dementia as difficult to manage (170,454,520). For

this reason, physicians who want to help their

patients with dementia to be admitted to a nursing

home may not document the dementia in the

patients’ medical records.

The proportion of nursing home residents with

dementia who have a recorded diagnosis of dementia

or a diagnosis of a disease or condition that causes

dementia is likely to increase in the future and may

have already increased since the 1985 National

Nursing Home Survey. Findings from the 1987

National Medical Expenditure Survey suggest the

proportion of nursing home residents who had such

a diagnosis in their medical records was slightly

higher in 1987 than it was in 1985 (236).

One reason for the expected increase in the

proportion of nursing home residents who have a

recorded diagnosis of dementia is the growing

awareness among physicians and others of Alzheimer’s disease and other diseases that cause

dementia. In addition, the resident assessment process mandated by the nursing home reform provisions

of the Omnibus Budget Reconciliation Act of 1987

(OBRA-87) requires evaluation of a resident’s

cognitive status. The Minimum Data Set, the resident assessment instrument developed for the implementation of OBRA-87, includes six questions

about cognitive status on its first page (see fig. 5-1

in ch. 5). By calling attention to residents’ cognitive

2 ICD.9.CM ~O&=~ we &PO~tic ~~d~- from tie Intermtional cla~~ifi”cation of Diseases, $lth Revision, clinical Mod@”cation, published b 1980.

328-405 - 92 - 3 QL 3
60 ● Special Care Units for People With Alzheimer’s and Other Dementias

status, this assessment instrument increases the

likelihood dementia will be diagnosed.

Preadmission Screening and Annual Resident

Review (PASARR), another mandated component

of OBRA-87, also increases the likelihood that

dementia will be diagnosed. OBRA-87 requires

States to have a PASARR program that 1) screens all

nursing home applicants and nursing home residents

to determine whether they have mental illness or

mental retardation, and 2) evaluates all those found

to have mental illness or mental retardation to

determine whether they need nursing home care and

whether they need “active treatment” for their

mental illness or mental retardation. Mentally ill and

mentally retarded nursing home applicants and

residents who are found in a PASARR evaluation

not to need nursing home care or to need “active

treatment” must be discharged. (Mentally ill and

mentally retarded nursing home residents who have

been in a nursing home for 30 months or more can

choose to remain in the nursing home even if they are

found not to need nursing home care or to need

‘‘active treatment. ’ ‘)3

In the original OBRA-87 language, a nursing

home applicant or resident with a primary or

secondary diagnosis of a mental disorder as defined

in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, 3rd

edition (DSM III) was considered to have mental

illness and therefore to be subject to a PASARR

evaluation. According to DSM III, dementia is a

mental disorder, but an amendment to the original

OBRA-87 language exempted individuals with a

primary diagnosis of dementia, including Alzheimer’s disease or a related disorder, from the

PASARR evaluation process. OBRA-90 extended

that exemption to individuals who have any diagnosis of dementia as long as they do not have a primary

diagnosis of a serious mental illness (320).

Since a PASARR evaluation can result in a

determination that an applicant or resident cannot be

admitted to or cannot remain in a nursing home,

PASARR creates an incentive for physicians who

want to have their patients admitted to or remain in

a nursing home to give the patients a diagnosis of

dementia in order to exempt them from the evaluation. The current lack of a definitive physical marker

for Alzheimer’s disease, the most common cause of

dementia, means that disproving such a diagnosis

would be difficult. OTA is not aware of any data that

show an increase in the proportion of nursing home

residents who have a diagnosis of dementia since the

implementation of PASARR in January 1989, but

anecdotal evidence suggests such an increase has

occurred, at least in some States.

Factors That Could Change the Future

Prevalence of Dementia in Nursing Homes

At least three factors could change the prevalence

of dementia in nursing homes in the future. One

factor is the availability of alternate residential care

settings for people with dementia, e.g. adult foster

homes and board and care and assisted living

facilities. These types of settings are proliferating in

some parts of the country and may substitute for

nursing homes for some individuals with dementia.

A second factor that could change the prevalence

of dementia in nursing homes is the availability of

supportive services for individuals with dementia

who live at home, e.g., adult day services and

in-home and overnight respite services. Such services may prevent or postpone nursing home placement for some individuals.

A third factor that could affect the future prevalence of dementia in nursing homes is changes in

Medicare or Medicaid eligibility, coverage, or reimbursement policies that either encourage or discourage nursing home care for persons with dementia. As

noted earlier, Medicaid policies in some States

restrict eligibility for Medicaid-funded nursing home

care for people with dementia. Any changes in

Medicaid policies in those or other States that

resulted in more or less restrictive eligibility policies

for persons with dementia would affect the number

of residents with dementia in nursing homes.

With respect to reimbursement policies, flat rate

systems, which reimburse nursing homes at the same

rate for all residents, generally create a financial

incentive for nursing homes to admit individuals

they regard as relatively easy and thus inexpensive

to care for and to deny admission to individuals they

regard as relatively difficult and thus more expensive to care for (51,416). Since many nursing home

administrators and staff members regard individuals

3 me ofibu~ B@~tRe~~~fiatio~ At of 1990 (OBRA.90) c~ged me te~ active t~eatme~t to specialized se~-ces for PASARR p~SeS.

OBR4-90 also changed the term mental illness to serious mental iZlness for PASARR purposes (320).
Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems ● 61

with dementia as relatively difficult to care for, they

may be reluctant to admit these individuals under a

flat rate reimbursement system.

As of 1990, 19 States were using case-mix

reimbursement systems for Medicaid-funded nursing home care (51), and Congress has mandated

development of a case-mix reimbursement system

for Medicare-funded nursing home care. The purpose of case-mix reimbursement systems is to

recognize explicitly differences among nursing home

residents in the resources required and therefore the

cost of their care and to adjust the level of

reimbursement to reflect those differences (142,416).

To the extent that the level of reimbursement for

residents with dementia in a given case-mix system

corresponds to nursing home administrators’ perception of the relative difficulty and cost of caring

for these residents vs. other types of residents, the

administrators are likely to be willing to admit

individuals with dementia.4 Anecdotal evidence

suggests the level of reimbursement for individuals

with dementia vs. other individuals in existing

case-mix systems does not correspond to administrators’ perceptions of the relative difficulty and cost

of their care and in effect discourages admission of

individuals with dementia.

Summary

A very large number of nursing home residents

have dementia-637,000 to 922,500 individuals

according to national surveys. Not all of these

individuals have a diagnosis of dementia in their

medical records, however. In 1985, at least one-half

of all nursing home residents with dementia did not

have a diagnosis of dementia in their medical

records. Moreover, most of the residents who had a

diagnosis of dementia had a general diagnosis, such

as organic brain syndrome, rather than a specific

diagnosis, such as Alzheimer’s disease. These findings support the complaint of many special care unit

advocates and others that dementia in nursing home

residents frequently is not carefully or accurately

diagnosed and sometimes is not diagnosed at all.

The proportion of nursing home residents with

dementia that has a diagnosis of dementia in their

medical records is probably higher now than it was

in 1985. For reasons discussed earlier, that proportion is likely to continue to increase in the future.

The true proportion of nursing home residents

with dementia could increase or decrease, depending

on several factors, e.g., the availability of appropriate care in alternate settings and Medicare and

Medicaid policies that encourage or discourage

nursing home care for persons with dementia.

CHARACTERISTICS OF

NURSING HOME RESIDENTS

WITH DEMENTIA

The 1985 National Nursing Home Survey, the

1987 National Medical Expenditure Survey, and

several smaller studies provide information about

various characteristics of nursing home residents.

OTA has used this information to compare the

characteristics of nursing home residents with dementia and nondemented nursing home residents. In

this section the two groups of residents are compared

with respect to age, gender, race, impairments in

activities of daily living, and psychiatric and behavioral symptoms. Two topologies of nursing home

residents are discussed.

Information about the characteristics of demented

and nondemented nursing home residents is useful

i nthinking about what should be special about ”

nursing home care for individuals with dementia.

The data presented in this section show that residents

with dementia generally are older than nondemented

residents. They are also more likely to have impairments in activities of daily living and psychiatric and

behavioral symptoms. There is considerable overlap, however, between demented and nondemented

residents in the distribution of these characteristics.

Information about the characteristics of nursing

home residents with dementia is also useful in

thinking about whether there are certain types of

individuals with dementia who might be more

appropriate than other types for special care units.

Probably the most important information for this

purpose is information about their coexisting medical conditions and physical impairments. To OTA’s

knowledge, that information is not available from

research based on a nationally representative sample

of nursing home residents. The 1985 National

AExis~g case-mix reimbmsement systems generaUy do not use dementia or a resident’s cognitive status as variables to defhe case mix. Otier

variables, such as disorientatio~ need for supervision and speci.ilc behavioral symptoms, which maybe proxies for dementia, are used to define case

mix in some reimbursement systems (142).
62 ● Special Care Units for People With Alzheimer’s and Other Dementias

Nursing Home Survey provides information about

the primary and other diagnoses of all nursing home

residents. For residents with dementia, diagnoses

related to their mental status have been extracted

from the survey data, but their other diagnoses have

not been extracted. According to an official of the

National Center for Health Statistics, that information would be of questionable validity because of the

large number of diagnostic categories and the

relatively small number of individuals in many of

the categories (189). One of the topologies of

nursing home residents discussed later in this section

incorporates information about residents’ coexisting

medical conditions and physical impairments that

was derived from data on residents of New York

nursing homes.s

Age, Gender, and Race

Table 2-1 presents data from the 1985 National

Nursing Home Survey on the age, gender, and race

of demented and nondemented nursing home residents. For the purpose of the comparisons in this

section, demented nursing home residents are residents who had a diagnosis of dementia in their

medical records or were said by members of the

nursing home staff to have senile dementia or

chronic or organic brain syndrome. Nondemented

nursing home residents are residents who did not

have a diagnosis of dementia in their medical

records and were not said by members of the nursing

home staff to have senile dementia or chronic or

organic brain syndrome.

According to the survey data, demented nursing

home residents were, on average, older than nondemented nursing home residents. As shown in table

2-1,48 percent of residents with dementia were over

age 85, compared with 33 percent of the nondemented residents.

The proportion of residents with dementia increased with age, from 20 percent of residents under

age 65, to 38 percent of those age 65 to 74,49 percent

of those age 75 to 84, and 56 percent of those over

age 85 (data not shown) (469). Conversely, the

proportion of nondemented residents decreased with

age.

Three-quarters of nursing home residents with

dementia were female (see table 2-l). A preponderance of female residents among all residents with

dementia is to be expected since female nursing

home residents greatly outnumber male residents.

The survey data indicate, however, that female

nursing home residents were more likely than male

residents to have dementia (48 percent vs. 40

percent, respectively) (data not shown) (469).

The proportion of nursing home residents with

dementia did not differ by race. As shown in table

2-1, the proportion of demented nursing home

Table 2-l—Distribution of Demented and

Nondemented Nursing Home Residents by

Age, Gender, and Race, United States, 1985

All Demented Nondemented

residents residents residents

(N=1,491,400) (N =696,800) (N= 794,600)

Age

Under 65.. . . 1270

65-74 . . . . . . . 14

75-84 . . . . . . . 34

85+. . . . . . . . . 40

Gender

Male. . . . . . . . 28

Female. . . . . . 72

Race

White. . . . . . . 92

Black. . . . . . . 7

Other. . . . . . . 1

5%

12

36

48

25

75

92

7

1

18%

16

33

33

32

68

92

7

1

SOURCE: Adapted from U.S, Department of Health and Human Serviees,

“Mental Illness in Nursing Homes: United States, 1985,” Public

Health Serviee, National Center for Health Statistics, DHHS

Pub. No. (PHS) 89-1758, Hyattsville, MD, Februafy 1991.

5 me 1985 National Nursing Home SWey provides information about the primary reason for residents’ admission to a nWS@ home as report~

by their next of kin. According to these next-of-kin reports, the primary reasons for admission for 32 percent of all residents overage 65 who had mental

disorders were Alzheirner’s disease, confusio~ forgetfulness, senility, or other emotional, mental, or nervous conditions. The primary reasons for

admission for the remaining residents over age 65 who had mental disorders were stroke (10 percent), atherosclerosis and other heart and circulatory

conditions (10 percent), hip or other fractures (7 percent), arthritis or another bone, muscle, or joint condition (4 percent), cancer (1 percent), central

nervous system diseases or injuries (2 percent), diseases of the digestive or endocrine systems (3 percent), 10SS of vision or hearing (2 percent), respiratory

conditions (2 percent), Parkinson’s disease (2 percent), dizziness, fainting, or falls (1 percent), genitourinmy diseases (1 percent), old age or general

debilitation (3 percent), or other or no main reason (21 percent) (469). Although interesting in itself, this information is of little value in determining

the coexisting medical conditions and physical impairments of residents with dementia for two reasons. Firs~ the category of persons with mentaZ

disorders includes residents with schizophrenia, other psychoses, depressive and anxiety disorders, mental retardation, and alcohol and drug abuse, ss

well as persons with dementia. In addition, since the residents’ next of kin were asked about only one condition-the condition they considered the

P-reason for the residen~’ a~ssion to the nwsing home, heir responses provide no information about the medical conditions and physiea.1

impairments of residents admitted because of mental conditions and no information about secondary medical conditions and physical impairments of

residents admitted because of physical conditions.
Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems . 63

Table 2-2—lmpairments in Activities of Daily Living

in Demented and Nondemented Nursing Home

Residents, United States, 1985

Table 2-3—Distribution of Psychiatric Symptoms

in Demented and Nondemented Nursing Home

Residents, United States, 1987

All Demented Nondemented

residents residents residents

(N= 1,491,400) (N =696,800) (N= 794,600)

All Demented Nondemented

residents residents residents

(N=1,518,400) (N =643,600) (N =856,200)

Needs help with:

Bathing. . . . . . . . . 89% 96% 82%

Dressing. . . . . . . 75 87 65

Using the toilet. . 61 74 49

Transferring. . . . . 60 70 51

Continence. . . . . 52 69 37

Eating. . . . . . . . . . 39 54 27

SOURCE: Adapted from U.S. Department of Health and Human Services,

“Mental Illness in Nursing Homes: United States, 1985,” Public

Health Service, National Center for Health Statistics, DHHS

Pub. No. (PHS) 89-1758, Hyattsville, MD, February 1991.

residents who were white, black, or ‘‘other” corresponds exactly to the proportion of nondemented

nursing home residents in each category.

Impairments in Activities of Daily Living

Table 2-2 presents data from the 1985 National

Nursing Home Survey on impairments in activities

of daily living among demented and nondemented

nursing home residents. The data show nursing

home residents with dementia were considerably

more likely than nondemented nursing home residents to need assistance with each of the activities of

daily living. For example, 96 percent of residents

with dementia needed assistance with bathing,

compared with 82 percent of nondemented residents. Sixty-nine percent of residents with dementia

needed assistance to remain continent, compared

with 37 percent of nondemented residents.

Symptoms of Depression and Other

Psychiatric Conditions

Data from the 1987 National Medical Expenditure

Survey indicate that symptoms of depression and

other psychiatric conditions are common among

nursing home residents with dementia. The survey

data show that 70 percent of nursing home residents

with dementia had depressive symptoms, including

worry, apprehension, drowsiness, withdrawal, impatience, and suspiciousness (see table 2-3). Sixty-one

Depressive

symptoms. . . . . . 64% 70% 61%

Psychotic

symptoms. . . . . . 30 36 26

Behavioral problems

0 problems. . . . . 53 41 63

1+. . . . . . . . . . . . . 47 59 40

1-4. . . . . . . . . . . . 43 53 37

5-10. . . . . . . . . . . 4 6 2

SOURCE: Adapted from U.S. Department of Health and Human Services,

published and unpublished datafromthe 1987National Medical

Expenditure Survey, Institutional Population Component, Current Residents, Agency for Health Care Pol”ky and Research,

Rockville, MD, 1991.

percent of the nondemented residents had depressive

symptoms (464).6

The 1987 National Medical Expenditure Survey

found 36 percent of nursing home residents with

dementia had psychotic symptoms, such as delusions and hallucinations (see table 2-3). Twenty-six

percent of nondemented residents had such symptoms.

Although these figures show that many nursing

home residents with dementia have depressive and

psychotic symptoms, it should be noted that not all

nursing home residents with dementia have these

symptoms. Seventy percent of the residents with

dementia had depressive symptoms according to the

survey data, but 30 percent of the residents with

dementia did not have such symptoms. Likewise, 36

percent of the residents with dementia had psychotic

symptoms, and 64 percent did not.

It is also clear from the survey data that depressive

and psychotic symptoms are not unique to residents

with dementia. Sixty-one percent of the nondemented residents had depressive symptoms, and 26

percent had psychotic symptoms. In fact, data

tabulated for OTA by the Agency for Health Care

Policy and Research show that 53 percent of all

nursing home residents who had depressive sympS The reported prevalen~ of depression and depressive symptoms among nursing home residents varies greatly depending on the S~@ s~Ple ~d

the procedures by which the condition and its symptoms are identified. Moreover, clinicians disagree about what constitutes depression and depressive

symptoms in persons with dementia. A study of 227 residents of one Pennsylvania nursing home found that 87 of the 166 residents with dementia (52

percent) and 69 of the 111 cognitively normal residents (62 percent) had major or minor depression based on self reports and observer ratings (342).

Another study of 454 residents of 8 Maryland nursing homes found that 29 of the 306 residents with dementia (9 percent) and 110 of the 148 cognitively

normal residents (74 percent) had major depression or depressive symptoms (388,389).
64 ● Special Care Units for People With Alzheimer’s and Other Dementias

toms and 49 percent of all residents who had

psychotic symptoms were not demented (464).

Behavioral Symptoms

Both the 1985 National Nursing Home Survey

and the 1987 National Medical Expenditure Survey

found behavioral symptoms were more common in

nursing home residents with dementia than in other

nursing home residents. The 1985 survey collected

information about six behavioral symptoms (disrobing/

exposing oneself, screaming, being physically abusive to self or others, stealing, getting lost or

wandering into unacceptable places, and inability to

avoid simple dangers) (468). Fifty-eight percent of

residents with dementia exhibited one or more of

these symptoms, whereas only 24 percent of nondemented residents exhibited one or more of the

symptoms.

The 1987 National Medical Expenditure Survey

collected information about 10 behavioral symptoms (wandering, physically hurting others, physically hurting oneself, dressing inappropriately, crying for long periods, hoarding, getting upset, not

avoiding dangerous things, stealing, and inappropriate sexual behavior) (237). Fifty-nine percent of

nursing home residents with dementia exhibited one

or more of these symptoms, compared with 40

percent of nondemented residents (see table 2-3).

Wandering is probably the most frequently cited

behavioral symptom of nursing home residents.

Data from the 1987 National Medical Expenditure

Survey and a previous National Nursing Home

Survey conducted in 1977 show 11 percent of all

nursing home residents wander (237,465). At least

three smaller studies have shown nursing home

residents with dementia are more likely than other

nursing home residents to wander (98,1 16,417). One

study of 402 residents of a 520-bed nursing home in

Rockville, MD, found, for example, that 47 percent

of the 216 demented residents wandered, compared

with 31 percent of the 186 nondemented residents

(98).

Sundowning is another frequently cited behavioral symptom of nursing home residents. The term

sundowning refers to an observed increase in agitated and confused behaviors that occurs in some

individuals in the late afternoon. A study of 89

randomly selected residents of one 180-bed nursing

home in Washington, DC, found 15 percent of the 59

residents with dementia exhibited this symptom,

compared with 7 percent of the 30 nondemented

residents (132).

Excessive or disruptive noisemaking, including

screaming, moaning, and repetitive verbalizations,

is a third frequently cited behavioral symptom of

nursing home residents. At least two studies have

shown demented residents are more likely than

nondemented residents to exhibit this symptom

(72,97).

Although these figures indicate nursing home

residents with dementia are more likely than other

nursing home residents to exhibit behavioral symptoms, it is clear not all nursing home residents with

dementia exhibit such symptoms. As shown in table

2-3, the 1987 National Medical Expenditure Survey

found 41 percent of nursing home residents with

dementia did not exhibit any of the measured

symptoms (464). Likewise, the 1985 National Nursing Home Survey found 42 percent of nursing home

residents with dementia did not exhibit any of the

measured symptoms (468).

It is also clear from the survey data that behavioral

symptoms are not unique to residents with dementia.

The 1987 National Medical Expenditure Survey

found 40 percent of nondemented nursing home

residents exhibited one or more behavioral symptoms (see table 2-3). Moreover, data from the two

national surveys show 35 to 47 percent of nursing

home residents who exhibited one or more behavioral symptoms were not demented (464,468).

The results of a study of a random sample of 1139

residents of 42 New York nursing homes also show

behavioral symptoms are not unique to residents

with dementia. The study found 23 percent of the

residents exhibited serious behavioral symptoms,

including dangerous, physically aggressive, and

verbally noisy or abusive behaviors (520). Twothirds of the residents who exhibited serious behavioral symptoms had dementia. By implication, it is

clear that one-third of the residents who exhibited

serious behavioral symptoms did not have dementia.

Topologies of Nursing Home Residents

Several topologies have been proposed to describe different types of nursing home residents. One

typology delineates five general types of residents

(339). The five types are based on differences in the

primary reason for the individuals’ admission to a
Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems ● 65

nursing home and their expected lengths of stay. The

five types are:

1.

2.

3.

4.

5.

individuals who are terminally ill and will

remain in the facility for 6 months or less;

individuals who require short-term rehabilitation or treatment for subacute illness and will

remain in the facility for 6 months or less;

individuals who are primarily physically impaired and will remain in the facility for longer

than 6 months;

individuals who are primarily cognitively impaired and will remain in the facility for longer

than 6 months; and

individuals who have significant cognitive and

physical impairments and will remain in the

facility for longer than 6 months (339).

In this typology, individuals with dementia are

included in two of the groups-long-stay residents

who are primarily cognitively impaired and longstay residents who are both cognitively and physically impaired.

A more complicated typology that was developed

with the use of a statistical grouping technique called

grade of membership (GOM) and data on the

characteristics of 3427 residents of New York

nursing homes delineates 6 types of nursing home

residents (283). The six types are:

1.

2.

3.

4.

limited impaired residents who usually have a

primary diagnosis of heart disease, diabetes,

arthritis, or a cognitive or mental disorder but

are relatively healthy, have few impairments in

activities of daily living or sensory impairments, and require relatively little nursing

care;

oldest-old, deteriorating residents who are

over age 85, have multiple medical problems,

including cancer, heart disease, arthritis,

stroke, diabetes, and digestive, neurological,

and pulmonary problems, but no dementia, and

require more nursing care than any of the other

types except type 6;

acute and rehabilitative residents who are

acutely ill, usually have been admitted from a

hospital for rehabilitation following hip fracture, stroke, or another condition, generally do

not have dementia, and are usually discharged

home after a short stay;

behavioral problem residents who usually

have a primarv diagnosis of a mental illness

and exhibit psychiatric and behavioral symptoms;

5. dementia residents who are relatively old and

usually have stroke, dementia, and/or psychiatric symptoms, as well as impairments in

activities of daily living; and

6. severely impaired residents who are relatively

young, often terminally ill, and have medical

problems, such as stroke, renal failure, and

respiratory and neurological diseases, and

severe impairments in activities of daily living; they have the longest stays and usually

require nursing services, such as wound care,

sterile dressings, and turning and positioning

(283).

Table 2-4 presents data on the resident characteristics associated with each of the six types. The

figures in table 2-4 represent the probability that an

individual who is exactly like that type has the

particular characteristic. Individuals with a diagnosis of Alzheimer’s disease or senile dementia are

included in four types—1,4, 5, and 6 (283). These

four types differ greatly in their other diagnoses,

physical impairments, and care needs.

The GOM technique is intended to model the

complex clinical reality of disease and functional

status in elderly people (283). Although the typology just described is derived from data on the

characteristics of residents of New York nursing

homes, experience in using the GOM technique with

data on other nursing home residents indicates the

same six types emerge (282). Thus, the six types

probably describe real types of nursing home

residents, and the four types that include individuals

with dementia probably represent more accurately

than the simpler typology described earlier the

clinical reality of dementia in nursing homes.

The GOM typology is useful in thinking about

which individuals with dementia might be appropriately cared for in special care units vs. nonspecialized units or other settings. For example, in type

6--severely impaired residents, there is a 20 percent

probability that an individual of this type has a

primary diagnosis of Alzheimer’s disease or senile

dementia and therefore might be an appropriate

candidate for placement in a special care unit. On the

other hand, all individuals of this type have impairments in activities of daily living-100 percent

require assistance in transferring, eating, dressing,

bathing, toileting, and hygiene, and 100 percent are
66 ● Special Care Units for People With Alzheimer’s and Other Dementias

Table 2-4—Characteristics of Six Types of Nursing Home Residents, New York State

Type of nursing home residents

Limited Oldest-old Acute and Behavioral Severely

impaired deteriorating rehabilitative problem Dementia impaired

Variable Frequency (1) (2) (3) (4) (5) (6)

1. Primary diagnosis

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

Heart disease. . . . . . . . .

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

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

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

Renal problems.. . . . . .

Digestive problems. . . . .

Hip fracture. . . . . . . . . . .

Liver and gall bladder

problems. . . . . . . . . . .

Alzheimer’s disease and

senile dementia. . . . .

Other neurological

problems. . . . . . . . . . .

Chronic respiratory

problems. . . . . . . . . . .

Other respiratory

problems. . . . . . . . . . .

Infectious disease. . . . .

Other endocrine

problems. . . . . . . . . . .

Metabolic disorder. . . . .

Blood disorder. . . . . . . .

Mental disorder. . . . . . .

Atherosclerosis. . . . . . . .

Other circulatory

problems. . . . . . . . . . .

Other. . . . . . . . . . . . . . . .

Associated conditions

1.43

17.79

10.78

4.05

5.94

0.64

0.70

1.92

0.12

15.29

10.30

1.64

0.61

0.34

0.18

0.34

0.49

18.40

2.56

1.22

5.27

3.33

50.60

16.37

12.26

22.03

6.39

7.56

4.61

1.02

8.17

16.49

5.16

1.93

6.39

75.72

2.66

2.31

6.24

17.54

12.28

2.83

5.46

5.25

0.66

35.56

0.00

7.77

8.56

0.00

0.00

0.00

1.79

62.83

0.00

8.57

14.39

0.00

1.52

0.00

3.01

9.48

18.56

1.10

11.10

1.74

2.27

9.52

0.00

0.00

24.64

0.00

0.81

0.00

0.00

0.00

0.00

0.00

0.00

6.05

11.72

2.36

49.95

17.67

17.43

12.28

0.00

0.00

6.28

0.00

0.00

0.00

0.00

1.38

0.00

100.00

2.20

2.11

0.00

0.00

0.00

0.00

0.00

8.49

1.39

0.00

0.00

9.47

0.00

0.00

0.00

0.00

0.00

22.68

0.00

0.00

0.00

0.00

1.46

0.00

0.00

44.54

20.46

0.00

0.00

0.00

0.00

19.46

0.00

0.00

0.06

0.00

0.00

0.34

42.50

0.00

0.00

0.00

0.70

0.00

0.00

0.00

36.94

0.00

0.00

0.00

0.00

62.03

13.43

5.20

19.11

0.00

0,00

7.21

0,00

0.00

0.00

2,61

3,33

0.00

100.00

0.00

0.00

0.00

0.00

0.00

0.00

7.83

0.00

1.32

0.00

20.72

0.00

0.00

1.44

0.00

0.00

0.00

20.07

27.32

0.00

1.17

0.00

0.00

1.55

0.00

17.83

0.00

0.00

8.59

0.00

21.23

22.95

7.46

0.00

29.95

0.00

6.73

0.00

10.01

0.00

0.00

3.10

29.95

100.00

0.00

0.71

0.00

0.00

0.00

0.00

3.82

0.00

0.42 0.00

12.07 0.00

0.00 0.00

6.79 3.30

0.00

0.00

1.37

1.43

0.00

0.20

0.00

22.20

0.00

0.00

0.00

3.05

0.00

0.00

0.00

5.78

0.00

1.75

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

14,

15,

16,

17,

18,

19.

20.

21.

22.

23.

24.

4.37

47.13

6.07

5.96

19.36

0.00

4.55

2.54

14.32

100.00

28.96

25.80

100.00

0.00

55.16

0.00

4.93

32.83

13.49

27.91

4.25

0.00

0.00

0.00

0.00

61.62

0.00

6.82

0.00

0.00

100.00

0.00

6.36

0.00

100.00

0.00

0.00

0.00

0.00

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

Heart disease. . . . . . .

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

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

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

Renal problems. . . . . .

Digestive problems. . .

Hip fracture. . . . . . . . .

Liver and gall

bladder disease. . . .

Alzheimer’s disease

and senile dementia.

Other neurological

problems. . . . . . . . . .

Chronic respiratory

problems... . . . . . . .

Other respiratory

problems... . . . . . . .

Urological problems. .

Infectious disease. . . .

Other endocrine

problems. . . . . . . . . .

Metabolic disorder. . .

Blood disorder. . . . . . .

Mental disorder. . . . . .

Eye problems.. . . . . .

Ear problems. . . . . . . .

Atherosclerosis. . . . . .

Other circulatory

1.34 7.00

0.00 0.00

0.00 100.00

7.59 23.40

1.57

0.00

100.00

0.00

0.00

0.00

2.63

3.42

0.00

0.00

0.00

0.00

0.00

15.70

5.00

51.34

0.00

100.00

31.94

27.35

problems. . . . . . . . . . 1.55 29.66
Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems . 67

Table 2-4—Characteristics of Six Types of Nursing Home Residents, New York State--Continued

Type of nursing home residents

Limited Oldest-old Acute and Behavioral Severely

impaired deteriorating rehabilitative problem Dementia impaired

Variable Frequency (1) (2) (3) (4) (5) (6)

25. Skin problems. . . . . . .

26. Fractured extremities.

27. Comatose. . . . . . . . . .

28. Terminally ill. . . . . . . .

29. Alcohol abuse. . . . . . .

30. Drug abuse. . . . . . . . .

Limitations

31. Vision:

No loss. . . . . . . . . . . .

Moderate loss. . . . . .

Severe loss. . . . . . . .

32. Hearing:

No loss. . . . . . . . . . . . .

Moderate loss. . . . . . .

Severe loss. . . . . . . . .

33. Verbal expression:

No difficulty. . . . . . . . .

With difficulty. . . . . . . .

Totally impaired. . . . . .

34. Reception:

No difficulty . . . . . . . . .

With difficulty. . . . . . . .

Totally impaired. . . . . .

35. Diet:

Regular. . . . . . . . . . . .

Other. . . . . . . . . . . . . .

36. Decubiti:

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

Single. . . . . . . . . . . . .

Multiple. . . . . . . . . . . . .

37. Discoloration. . . . . . . .

38. Edema. . . . . . . . . . . . .

39. Weight loss. . . . . . . . .

40. Severe pain. . . . . . . . .

41. Contractures. . . . . . . .

42. Dyspnea. . . . . . . . . . . .

43. Mobility:

No impairment. . . . . . .

With help. . . . . . . . . . .

Wheelchairfast. . . . . .

Chairfast. . . . . . . . . . .

Bedfast. . . . . . . . . . . . .

44. Transfer:

No impairment. . . . . .

With help. . . . . . . . . . .

Bedfast. . . . . . . . . . . .

45. Eating:

No loss. . . . . . . . . . . . .

With supervision. . . .

Totally impaired. . . . . .

46. Dressing:

No impairment. . . . . . .

With supervision. . . .

Totally impaired. . . . . .

2.60

1.81

1.20

1.32

3.17

0.26

74.53

19.03

6.44

80.22

15.26

4.52

66.43

23.72

9.85

57.50

34.36

8.14

19.56

80.44

88.79

9.57

1.64

6.02

15.16

13.61

8.03

22.49

4.71

21.65

24.37

38.11

14.74

1.14

29.51

40.11

30.39

22.12

55.85

22.03

13.22

36.68

50.10

0.00

0.00

0.00

0.00

4.77

0.00

100.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

34.80

65.20

100.00

0.00

0.00

0.00

0.00

0.00

4.19

0.00

0.00

100.00

0.00

0.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

62.72

37.28

0.00

14.27

0.00

0.00

0.00

0.00

0.00

0.00

63.05

36.95

0.00

77.15

22.85

100.00

0.00

0.00

47.26

52.74

0.00

0.00

100.00

100.00

0.00

0.00

59.66

93.48

53.30

25.41

0.00

46.50

0.00

0.00

100.00

0.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

3.62

0.00

1.79

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

91.11

8.89

0.00

100.00

0.00

0.00

28.35

71.65

93.73

6.27

0.00

0.00

13.38

9.86

20.44

0.00

0.00

0.00

62.36

37.64

0.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

2.14

0.00

0.00

0.00

26.64

3.14

100.00

0.00

0.00

100.00

0.00

0.00

83.53

16.65

0.00

0.00

100.00

0.00

18.81

81.19

100.00

0.00

0.00

0.00

21.33

42.09

9.77

0.00

0.00

100.00

0.00

0.00

0.00

0.00

100.00

0.00

0.00

0.00

100.00

0.00

100.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

91.92

8.08

0.00

100.00

0.00

0.00

51.13

48.87

0.00

40.18

59.82

0.00

26.83

73.17

100.00

0.00

0.00

0.00

0.00

4.39

0.00

0.00

0.00

0.00

38.43

61.57

0.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

0.00

100.00

4.46

5.60

6.37

4.95

0.00

0.00

54.39

45.61

0.00

100.00

0.00

0.00

0.00

48.31

51.69

0.00

38.89

61.11

0.19

99.81

52.33

39,88

7.79

0.00

4.90

10.14

0.00

97.90

0.00

0.00

0.00

36.15

59.27

4.58

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

100.00
68 ● Special Care Units for People With Alzheimer’s and Other Dementias

Table 2-4—Characteristics of Six Types of Nursing Home Residents, New York State--Continued

Type of nursing home residents

Limited Oldest-old Acute and Behavioral Severely

impaired deteriorating rehabilitative problem Dementia impaired

Variable Frequency (1) (2) (3) (4) (5) (6)

47. Bathing:

No impairment. . . . . . .

With assistance. . . . . .

Totally impaired. . . . . .

48. Toileting:

No impairment. . . . . .

With help. . . . . . . . . . .

Totally impaired. . . . .

49. Bladder control:

Continent . . . . . . . . . . .

50.

51.

52.

53.

54.

55.

56.

57.

58.

59.

60.

61.

62.

Incontinent. . . . . . . . . .

Indwelling. . . . . . . . . . .

External. . . . . . . . . . . .

Bowel:

Continent. . . . . . . . . . .

Incontinent. . . . . . . . . .

Colostomy. . . . . . . . . .

Personal hygiene:

No impairment. . . . . . .

With supervision. . . .

With assistance. . . . . .

Learning:

No impairment. . . . . . .

With difficulty. . . . . . . .

Totally impaired. . . . . .

Patient wanders. . . . .

Patient verbally

abusive. . . . . . . . . . .

Patient physically

aggressive. . . . . . . .

Severe depression. . .

Hallucinations. . . . . . .

Paranoia. . . . . . . . . . .

Patient withdrawn. . . .

Delusion. . . . . . . . . . . .

Hoarding. . . . . . . . . . .

Manipulative. . . . . . . .

2.25

42.88

54.87

27.37

24.25

48.38

39.31

51.59

7.27

1.84

46.57

53.38

1.05

12.32

25.84

61.84

32.80

49.09

18.11

9.48

34.90

16.95

7.36

6.13

7.65

32.11

4.41

5.66

11.97

10.12

89.88

0.00

100.00

0.00

0.00

100.00

0.00

0.00

0.00

99.11

0.00

0.89

54.55

45.56

0.00

91.94

8.06

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

7.25

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

0.00

0.00

100.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

86.14

0.00

0.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

100.00

0.00

0.00

0.00

99.17

0.00

0.83

0.00

100.00

0.00

84.46

15.54

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

7.81

36.44

100.00

0.00

0.00

100.00

0.00

0.00

0.00

100.00

0.00

0.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

100.00

0.00

94.33

100.00

100.00

100.00

100,00

100.00

100.00

82.83

39.77

78.97

0.00

0.00

100.00

0.00

100.00

0.00

0.00

100.00

0.00

0.00

0.00

100.00

0.00

0.00

0.00

100.00

0.00

93.40

6.60

17.90

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

0.00

100.00

0.00

0.00

100.00

0.00

58.92

32.78

8.29

0.00

100.00

0.00

0.00

0,00

100.00

0.00

0.00

100.00

0.00

0.00

0.00

0.00

0.00

0.00

47.16

0.00

0.00

0.00

SOURCE: K.G. Manton, J.C. Vertrees, and M.A. Woodbury, “Functionally and Medically Defined Subgroups of Nursing Home Populations,” Hea/th Care

Financing Review 12(1):50-52, 1990.

incontinent; they also require extensive nursing needed by individuals in type 6, and exhibit behavservices, such as wound care, sterile dressings, and ioral symptoms. Thus they might be appropriate

turning and positioning. For these reasons, they candidates for placement in a special care unit.

might be more appropriately cared for in a nonspecialized nursing home unit. In contrast, in type Factors That Could Change the Types of

4--behavioral problem residents, there is a 23 Individuals With Dementia

percent probability that an individual of this type has in Nursing Homes a primary diagnosis of Alzheimer’s disease or senile

dementia and a 62 percent probability that such an The same factors that could change the prevalence

individual has any diagnosis of Alzheimer’s disease of dementia in nursing homes could also change the

or senile dementia. Individuals in this type have less types of individuals with dementia in nursing

severe impairments in activities of daily living, homes. These factors include availability of altergenerally do not require the kinds of nursing services nate residential care settings for persons with
Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems . 69

dementia, availability of supportive services for

persons with dementia who live at home, and

Medicare and Medicaid eligibility, coverage, and

reimbursement policies that encourage or discourage nursing home care for certain types of individuals with dementia. Greater availability of appropriate services for persons with dementia in non-nursinghome settings is likely to reduce the number and

proportion of nursing home residents with dementia

who are in the middle stages of their illness and are

relatively physically healthy except for their dementia and, conversely, increase the number and proportion who are in the late stages of dementia and have

numerous medical conditions and physical impairments in addition to dementia. The wider use of

case-mix systems to determine the level of Medicare

and Medicaid reimbursement for nursing home care

is also likely to differentially increase the proportion

of nursing home residents with dementia who have

numerous medical conditions and physical impairments in addition to dementia.

Another factor that could change the types of

individuals with dementia in nursing homes is

changes in hospital discharge practices. Following

the implementation of the Medicare prospective

payment system in 1983, the average length of

hospital stays for Medicare beneficiaries decreased,

and the average severity of illness increased among

individuals who were admitted to nursing homes

from hospitals (262,396,430). Future changes in

hospital discharge practices that resulted in shorter

average length of hospital stays could result in

further increases in severity of illness among both

demented and nondemented nursing home residents.

Summary

Findings of two national surveys based on representative samples of nursing home residents show

residents with dementia are more likely than nondemented residents to have impairments in activities of

daily living and depressive, psychotic, and behavioral symptoms. At the same time, survey data show

that some nursing home residents with dementia are

not impaired in each of the activities of daily living

about which information was obtained, that significant proportions of nursing home residents with

dementia do not have depressive or psychotic

symptoms (30 percent and 64 percent, respectively),

and that more than 40 percent of nursing home

residents with dementia do not have behavioral

symptoms (464). It is also clear from the survey data

that although nondemented residents are less likely

than demented residents to have impairments in

activities of daily living and depressive, psychotic,

and behavioral symptoms, significant proportions of

nondemented residents have each of these characteristics.

The literature on nursing home care for persons

with dementia often implies that virtually all nursing

home residents with dementia have behavioral

symptoms and that behavioral symptoms in nursing

homes are almost always symptoms of demented

residents. The survey data contradict both assumptions.

Parenthetically, it is interesting to note that

sundowning behavior, which is mentioned often in

the literature on nursing home care for persons with

dementia, was exhibited by only a small proportion

of residents with dementia (15 percent) in the one

study OTA is aware of that measured the incidence

of this behavior (132). Similar findings for several

other behavioral symptoms are noted in chapter 4.

Behavioral symptoms are often difficult for nursing home staff members to manage. As discussed in

the following section of this chapter, one of the most

frequent complaints about the care provided for

residents with dementia by most nursing homes

concerns inappropriate staff responses to residents’

behavioral symptoms. As a result, one objective of

many special care units is to implement more

effective methods of responding to these symptoms.

Even if all nursing home residents with dementia

were in special care units, however, a large proportion of all nursing home residents with behavioral

symptoms (35 to 47 percent according to national

survey data) would still be in nonspecialized units.

Likewise, if special care units were designated to

serve only residents with behavioral symptoms-an

option that has been suggested—the units would not

serve all individuals with dementia who need

nursing home care, because more than 40 percent of

nursing home residents with dementia do not exhibit

behavioral symptoms.

These findings point out the diversity of nursing

home residents with dementia. The typology of

nursing home residents based on the GOM technique identifies four distinct types of nursing home

residents with dementia-limited impaired residents, behavioral problem residents, dementia residents, and severely impaired residents. Special care

units may be more appropriate for some of these
70 . Special Care Units for People With Alzheimer’s and Other Dementias

types than others. As discussed in chapter 3, current

residents of special care units are somewhat less

physically impaired than residents with dementia in

nonspecialized nursing home units. Special care

units may be shown to be more effective for these

less physically impaired residents than for individuals with dementia who have many medical conditions and physical impairments in addition to

dementia.

PROBLEMS IN THE CARE

PROVIDED FOR NURSING HOME

RESIDENTS WITH DEMENTIA

Problems in the care provided for individuals with

dementia in many nursing homes are the primary

reason for the development and proliferation of

special care units. This section discusses these

problems and their impact on residents with dementia, their families, nursing home staff members who

take care of them, and nondemented nursing home

residents.

Complaints and Concerns About the Care

Provided for Individuals With Dementia in

Many Nursing Homes

The literature on nursing home care for individuals with dementia contains numerous complaints

and concerns about the care provided for these

individuals in many nursing homes. Table 2-5 lists

the most frequently cited complaints and concerns.

(An identical list appears in table 1-1 in ch. 1.) This

list was derived from OTA’s review of 30 articles,

reports, and books on nursing home care for persons

with dementia (48,55,59,67,107,1 15,125,162,163,

165,170,171,182,191,241,243,263,274,339,346,352,

354,359,364,370,385,386,393,414,446). The inclusion of items in table 2-5 does not imply that data

necessarily exist to prove the items are true but

rather that the items are aspects of what is believed

to be wrong with the care provided for people with

dementia in most nursing homes and therefore what

should be done differently in special care units.

Some of the complaints and concerns listed in

table 2-5 apply primarily to nursing home residents

with dementia, e.g., the complaint that dementia

often is not carefully or accurately diagnosed and

sometimes is not diagnosed at all. Other complaints

and concerns listed in table 2-5 would apply equally

to nondemented residents if the explicit references to

dementia were omitted. To determine which of the

frequently cited complaints and concerns about

nursing home care for individuals with dementia are

the same as the problems in nursing home care for all

residents, OTA compared the complaints and concerns listed in table 2-5 with the problems identified

by the Institute of Medicine’s Committee on Nursing Home Regulation in its landmark 1986 report

Improving the Quality of Care in Nursing Homes

(318). The Institute of Medicine’s report identified

many problems with the care provided by some

nursing homes:

●

●

●

●

●

●

●

●

●

●

●

●

●

●

The

insufficient attention to residents’ rights;

physical abuse and neglect;

inadequate medical and nursing care, including

failure to identify and treat acute and chronic

diseases and conditions;

lack of well-trained, motivated, and adequately

supervised staff;

insufficient attention to residents’ quality of

life;

lack of choices for residents, e.g., choices about

when and what they eat, whom they room with,

and when they go to bed and get up;

failure to notify residents about and involve

them in decisions about their care and about

aspects of the operation of the facility that

affect their care and the quality of their lives;

failure to notify residents’ families about and

involve them in decisions about the residents’

care;

lack of psychiatric treatment for residents who

need it;

overuse and misuse of psychotropic drugs;

overuse and misuse of physical restraints;

failure to create a home-like environment;

lack of adequate and comfortable lighting,

sound levels, and room temperature; and

lack of interaction between the nursing home

and the community (318).

Institute of Medicine’s report emphasized that

these problems exist in some but not all nursing

homes and that some nursing homes provide highquality care (318).

Clearly there are similarities between the problems cited in the Institute of Medicine’s report and

the concerns and complaints listed in table 2-5.

There are also some notable differences—

particularly in the emphasis placed on certain types

of problems. One of these differences is the greater

emphasis in the literature on nursing home care for
Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems . 71

Table 2-5—Frequently Cited Complaints and Concerns About the Care Provided for

Nursing Home Residents With Dementia

• Dementia in nursing home residents often is not carefully or accurately diagnosed and sometimes is not

diagnosed at all.

• Acute and chronic illesses, depression, and sensory impairments that can exacerbate cognitive impairment

in an individual with dementia frequently are not diagnosed or treated.

. There is a pervasive sense of nihilism about nursing home residents with dementia; that is, a general feeling

among nursing home administrators and staff that nothing can be done for these residents.

• Nursing home staff members frequently are not knowledgeable about dementia or effective methods of

caring for residents with dementia. They generally are not aware of effective methods of responding to

behavioral symptoms in residents with dementia.

• Psychotropic medications are used inappropriately for residents with dementia, particularly to control

behavioral symptoms.

. Physical restraints are used inappropriately for residents with dementia, particularly to control behavioral

symptoms.

• The basic needs of residents with dementia, e.g., hunger, thirst, and pain relief, sometimes are not met

because the individuals cannot identify or communicate their needs, and nursing home staff members may

not anticipate the needs.

• The level of stimulation and noise in many nursing homes is confusing for residents with dementia.

● Nursing homes generally do not provide activities that are appropriate for residents with dementia

• Nursing homes generally do not provide enough exercise and physical movement to meet the needs of

residents with dementia.

● Nursing homes do not provide enough continuity in staff and daily routines to meet the needs of residents

with dementia.

● Nursing home staff members do not have enough time or flexibility to respond to the individual needs of

residents with dementia.

● Nursing home staff members encourage dependency in residents with dementia by performing personal care

functions, such as bathing and dressing, for them instead of allowing and assisting the residents to perform

these functions themselves.

• The physical environment of most nursing homes is too “institutional’ and not “home-like” enough for

residents with dementia.

. Most nursing homes do not provide cues to help residents find their way.

. Most nursing homes do not provide appropriate space for residents to wander.

• Most nursing homes do not make use of design features that could support residents’ independent

functioning.

● The needs of families of residents with dementia are not met in many nursing homes.

SOURCE OKleG Of ‘Jk@nology Assessment 1992.

individuals with dementia on aspects of the physical independent functioning in cognitively impaired

environment of most nursing homes that are per- individuals.

ceived to be inappropriate for these individuals. A second difference between the problems cited

These aspects include the lack of cues to help in the Institute of Medicine’s report and complaints

residents find their way, the lack of appropriate and concerns listed in table 2-5 is the greater

space for residents to wander, and the failure to emphasis in the literature on nursing home care for

incorporate other design features that could support persons with dementia on behavioral symptoms and
72 ● Special Care Units for People With Alzheimer’s and Other Dementias

staff responses to these symptoms that are perceived

to be inappropriate for the residents. As discussed in

the previous section, nursing home residents with

dementia are more likely than other residents to

exhibit behavioral symptoms. Critics of the care

provided for individuals with dementia by most

nursing homes contend that nursing home staff

members often use inappropriate methods—

particularly psychotropic medications and physical

restraints-to manage residents’ behavioral symptoms and that staff members are not aware of other,

more effective methods of responding to these

symptoms (109,171,191,277,359).

Both the Institute of Medicine’s 1986 report and

the literature on nursing home care for persons with

dementia cite the lack of adequately trained staff in

many nursing homes. The Institute of Medicine’s

report focuses on lack of training in general, whereas

the literature on nursing home care for persons with

dementia focuses specifically on lack of training

about the care of residents with dementia. Training

about the care of nursing home residents with

dementia is clearly a subset of training about the care

of all kinds of nursing home residents, but one

rationale for establishing special care units is that it

is easier to develop and maintain an adequately

trained staff when the focus of training is dementia

and the care of residents with dementia than when

the focus of training is much broader (263,270,354).

Both the Institute of Medicine’s report and the

literature on nursing home care for persons with

dementia also cite inappropriate use of psychotropic

medications and physical restraints. As discussed in

the following section, these two problems affect all

nursing home residents to some degree, but available

data indicate psychotropic medications and physical

restraints are used more for nursing home residents

with dementia than for other residents.

Use of Psychotropic Medications

and Physical Restraints

Psychotropic medications and physical restraints

are used extensively in nursing homes and are more

likely to be used for nursing home residents with

dementia than for nondemented residents. As noted

at the beginning of this chapter, overuse and

inappropriate use of psychotropic medications and

physical restraints are major problems in themselves. They are also perceived by special care unit

advocates and others as manifestations of the failure

of many nursing homes to use more appropriate

methods of responding to residents’ behavioral

symptoms.

Use of Psychotropic Medications

Various studies have shown that 35 to 65 percent

of all nursing home residents are prescribed and/or

receive at least one psychotropic medication, including antipsychotic, antidepressant, antianxiety, and

sedative/hypnotic medications (18,19,52,366,414,

425, 429,433,461). According to these studies, 9 to

26 percent of residents are prescribed and/or receive

more than one such medication.

Nursing home residents with dementia are more

likely than other nursing home residents to receive

psychotropic medications. A study of medication

use by residents of 12 nursing homes in Massachusetts found that during a one-month period, 72

percent of residents with a diagnosis of Alzheimer’s

disease used at least one psychotropic medication

for 5 or more days, compared with 53 percent of all

residents (19).

A study of a representative sample of 3352

residents of nursing homes in Rhode Island also

found the use of psychotropic medications was

significantly correlated with cognitive status (425).

Among residents with no cognitive impairment or

only mild cognitive impairment, 49 percent received

at least one psychotropic medication, compared with

50 percent of those with moderate cognitive impairment and 57 percent of those with severe cognitive

impairment. Cognitive impairment was not the only

resident characteristic significantly correlated with

receipt of psychotropic medications. Sixty-six percent of residents who exhibited behavioral symptoms (e.g., noisiness, abusiveness, wandering, disrobing) received one or more psychotropic medications, compared with 48 percent of those who did not

exhibit such symptoms.

Considering only antipsychotic medications, a

study of 484 residents admitted to 8 Maryland

nursing homes between February 1987 and March

1988 found the use of these medications was

significantly higher in residents with dementia than

nondemented residents (389). Forty-four percent of

the 123 residents with dementia complicated by

depression, delusions, or delirium and 34 percent of

the 183 residents with dementia uncomplicated by

any of these factors received antipsychotic medications. In contrast, 24 percent of the 58 residents with
Chapter 2--Nursing Home Residents With Dementia: Characteristics and Problems ● 73

a mental illness and only 7 percent of the 90

residents with neither dementia nor a mental illness

received antipsychotic medications.

Considering antipsychotic and antianxiety medications, a study of 760 residents of 7 Wisconsin

nursing homes found the use of these medications

was significantly higher in residents with dementia

than in nondemented residents (429). Thirty-three

percent of the 274 residents with dementia uncomplicated by psychotic symptoms or other mental

illness received one or both of these types of

medications over a one-month period, compared

with 15 percent of residents with neither dementia

nor mental illness.

Interestingly, a study of 408 residents of a

508-bed nursing home in Rockville, MD, found that

residents who were agitated and demented were

significantly more likely than residents who were

agitated but not demented to receive antipsychotic

medications (28). In contrast, residents who were

agitated but not demented were more likely to

receive antianxiety medications.

Psychotropic medications are often used to control behavioral symptoms in nursing home residents

with dementia, but many of the frequently used

medications have not been demonstrated to be

effective for this purpose (18,19,180,208,277,

285,339,381,389,397,406,414,425). Moreover, some

of the most frequently used medications can cause

confusion, disorientation, and oversedation in elderly people, thus tending to exacerbate cognitive

deficits in elderly individuals with dementia. Proponents of specialized nursing home care for persons

with dementia advocate the use of other approaches

to manage behavioral symptoms and argue the

staff’s first response to these symptoms should not

be psychotropic medications. On the other hand, it is

clear psychotropic medications are effective in

treating certain symptoms in some persons with

dementia (121,180,277,347).

One intent of the nursing home reform provisions

of OBRA-87 was to limit the use of psychotropic

medications in nursing homes. OBRA-87 mandates

a bill of rights for nursing home residents, which

includes the right ‘‘to be free from any physical or

chemical restraints imposed for the purposes of

discipline or convenience, and not required to treat

the resident’s medical symptoms.” In 1991, the

Health Care Financing Administration issued draft

interpretative guidelines for surveyors, including

specific guidelines on the use of psychotropic

medications. The guidelines list specific medications and conditions for which they can and cannot

be used. A recent retrospective review of antipsychotic medication use from 1976 to 1985 for more

than 8000 residents of 60 nursing homes in 8 States

found half of the use of these medications would not

have been allowed under the new guidelines (150).

Use of Physical Restraints

Like psychotropic medications, physical restraints

are also used extensively in nursing homes. Physical

restraints include any externally applied device

intended to restrict an individual’s free movement

(383,446). Examples of physical restraints are Posey

vests that are put on the individual and then tied to

the individual’s bed or chair; geriatric chairs that

have a tray table which the individual cannot

remove; bed rails; lap belts; chest, waist, leg, and

wrist restraints; and mittens that the individual

cannot remove. Since physical restraints are defined

in large part by the purposes for which they are used,

devices such as wheelchair brakes and sheets may

also be physical restraints if they are intended to

inhibit a person’s free movement (182,300).

A 1989 literature review identified four studies

that reported on the prevalence of restraint use in

U.S. nursing homes (133). The studies show that 25

to 41 percent of residents were restrained at the time

the studies were conducted. A recently published

study of restraint use in 12 nursing homes in

Connecticut found that 1042 of the 1756 residents of

these facilities (59 percent) were restrained at the

beginning of the study (446). A sample of 397

residents who had not been restrained at the beginning of the study was followed for a year, during

which time 122 of the 397 residents were restrained.

Thus a total of 1164 of the original 1756 residents

(66 percent) were restrained at some time during the

year.

Restraint use varies from one nursing home to

another. The study of 454 residents of 8 Maryland

nursing homes between February 1987 and March

1988 found that in the 3 facilities with the highest

use of restraints, an average of 73 percent of the

residents were restrained at some time during the

year, compared with an average of 55 percent of the

residents in the 3 facilities with the lowest use of

restraints (61).
74 ● Special Care Units for People With Alzheimer’s and Other Dementias

Some commentators contend that once restraints

are used for a nursing home resident, they generally

are used on a regular basis (300), but the study just

cited of restraint use in 12 Connecticut nursing

homes found use was more varied. Of the 122

residents who were restrained for the first time

during the study year, 34 percent were restrained for

a single period of time that lasted less than 30 days;

34 percent were restrained during more than one

period of time but had long periods when they were

not restrained; and 32 percent were restrained on a

regular basis, defined as at least 20 days each month

(446).

Nursing home residents with dementia are more

likely than nondemented nursing home residents to

be physically restrained (133,389,446). The study

just cited of restraint use in 12 Connecticut nursing

homes found that during the study year, 51 percent

of the residents who were disoriented were restrained, compared with only 17 percent of those

who were not disoriented (446).

The study of 8 Maryland nursing homes conducted between February 1987 and March 1988 also

found that the residents with dementia were significantly more likely than nondemented residents to be

physically restrained (389). Forty-eight percent of

the 123 residents with dementia complicated by

depression, delusions, or delirium and 41 percent of

the 183 residents with dementia uncomplicated by

any of these factors were physically restrained. In

contrast, 27 percent of the 58 residents with a mental

illness and 13 percent of the 90 residents with neither

dementia nor a mental illness were physically

restrained. Residents with dementia who also had

severe impairments in activities of daily living were

much more likely to be physically restrained than

residents with dementia who did not have such

impairments (61).

A variety of reasons are given for the use of

physical restraints for nursing home residents: 1) to

protect residents from injury due to falling or

wandering; 2) to prevent residents from injuring

other residents or staff members; 3) to prevent

residents from interfering with their own treatment,

for example, by removing feeding tubes or opening

wounds; 4) to prevent behavioral problems; 5) to

satisfy some residents’ families who request that

restraints be used, primarily to protect their relative

from falling; 6) to protect the nursing home from the

risk of being sued for fall-related injuries; and 7) to

provide “postural support” or maintain “body

alignment,’ for example, by keeping a resident from

slipping down in his or her chair (133,182,212,300,

311,446). In addition, physical restraints are sometimes used when a nursing home has insufficient

staff to adequately supervise residents.

Sometimes physical restraints are also used to

punish residents (133,31 1). A telephone survey of a

random sample of 577 nurses and nurse aides from

31 nursing homes in New Hampshire found excessive use of restraints was the most frequently

mentioned type of resident abuse (348). One-fifth of

the nurses and nurse aides said they had observed

this type of abuse, and of those who had observed it,

two-thirds said they had observed it frequently. Six

percent of the nurses and nurse aides reported they

had used restraints to punish residents.

Many negative effects of physical restraints have

been identified. These negative effects include

physiological effects of immobility, such as incontinence, contractures, and loss of bone and muscle

mass; increased anxiety and agitation; aggravated

behavioral symptoms, such as screaming, hitting,

and biting; decreased social behavior and decreased

social relationships; demoralization, loss of self-

-esteem, and emotional withdrawal; and injuries and

death due to improper use of the restraints or the

residents’ attempts to escape from the restraints

(3O,l33,l39,l82,2O8,3OO,3O5,383,427,446,49O,498).

A study of 24 agitated nursing home residents

with dementia found the use of restraints did not

reduce and may have increased their agitation (490).

Over the 3-month period of the study, the researchers

observed that residents exhibited significantly more

agitated behaviors when they were restrained than

when they were not. Seven of the 24 residents were

restrained more than 50 percent of the day and night.

Five of these seven residents exhibited physically

aggressive behaviors, such as biting and hitting,

while they were restrained. Fifteen of the 24

residents fell at least once during the study period,

sometimes while they were restrained. It is not

possible to determine from the study data whether

they would have fallen more often if they had not

been restrained.

As noted earlier, one of the primary objectives of

many special care units is to reduce the use of

psychotropic medications and physical restraints.

Results of studies reviewed in the next chapter

suggest that special care units have been successful
Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems ● 75

in reducing the use of physical restraints but use of

psychotropic medications remains high.

Negative Consequences for Residents With

Dementia, Their Families, Nursing Home

Staff Members, and Nondemented Nursing

Home Residents

Problems in the care provided for nursing home

residents with dementia have many negative consequences for residents, their families, nursing home

staff members who take care of them, and nondemented residents. Inappropriate nursing home care

tends to exacerbate the effects of an individual’s

dementing disease or condition. In many instances,

however, it is difficult to distinguish effects of an

individual’s dementing disease or condition and

effects of inappropriate care.

Negative Consequences for Residents With

Dementia

Problems in the care provided for nursing home

residents with dementia have many negative consequences for the residents. These consequences can

be categorized in terms of excess disability, reduced

quality of life, reduced physical safety, and reduced

access to nursing home care. As noted in chapter 1,

excess disability is the discrepancy that exists when

a person’s fictional impairment is greater than that

warranted by the person’s disease or condition

(47,219). The concept of excess disability implies an

individual with dementia has certain impairments in

functioning caused directly by his or her dementing

disease or condition and other impairments in

functioning caused by other factors. One example of

excess disability is the increased confusion caused in

some persons with dementia by psychotropic medications intended to control their behavior.

Inappropriate nursing home care can cause excess

disability in terms of an individual’s cognitive

functioning, mood, self-care abilities, and behavior.

Excess disability in cognitive functioning may be

caused, for example, by untreated acute or chronic

illness, depression, sensory impairments, or pain, as

well as by excessive environmental noise and

stimulation and psychotropic medications. Excess

disability in behavior maybe caused by inappropriate staff responses to the resident’s physical or

emotional needs or behavioral symptoms, excessive

environmental noise or stimulation, insufficient

activities and exercise, use of physical restraints, and

other factors. Extreme behavioral responses, referred to as catastrophic reactions, in which an

individual with dementia becomes acutely agitated,

angry, or combative, are often attributed to these

factors rather than to an individual’s dementing

disease or condition (47,274,353,371,385). Although

it is difficult in practice to differentiate functional

impairments that are or are not warranted by an

individual’s disease or condition, some of the

characteristics of nursing home residents with dementia cited earlier (e.g., the high proportions of

residents with impairments in activities of daily

living and behavioral symptoms) may be due as

much to problems in the care they receive in the

nursing home as to their dementing disease or

condition (107,1 15,125,165,171,263,353,385,386).

Quality of life is difficult to evaluate in general

and particularly difficult to evaluate in individuals

with dementia. Poor quality of life is attributed to

nursing home residents with dementia when they are

observed to be agitated, restless, depressed, crying,

screaming, calling out repetitively, and/or extremely

withdrawn. In some instances, these reactions are

caused by an individual’s dementing disease or

condition, and in other instances they are caused by

inappropriate care (38,107,1 15,125,263).

In addition to excess disability and reduced

quality of life, problems in the care provided for

nursing home residents with dementia occasionally

have drastic consequences in terms of the residents’

physical safety. Individuals with dementia sometimes wander away from nursing homes if they are

not well supervised and the facility is not locked or

otherwise secured. Some of these individuals die

before they are found (188).

A final consequence of problems in the care

provided for nursing home residents with dementia

is reduced access to nursing home care. Nursing

home administrators and staff often regard people

with dementia as difficult to manage because of their

behavioral symptoms and may be reluctant to admit

them for this reason. As a result, some individuals

with dementia who need nursing home care may not

be able to obtain it (109,170,454,520). To the extent

that residents’ behavioral symptoms are caused or

exacerbated by inappropriate care, this access problem is also attributable to inappropriate care.

The reluctance of nursing homes to admit persons

with dementia, especially those who are perceived to

have behavioral symptoms, was documented in a
76 . Special Care Units for People With Alzheimer’s and Other Dementias

1990 report of the General Accounting Office

(GAO), Nursing Homes: Admission Problems for

Medicaid Recipients and Attempts To Solve Them

(454). The GAO report was based on interviews with

Medicaid and health department officials, long-term

care ombudsmen, representatives from nursing home

industry associations, advocates for the elderly,

hospital discharge planners, and nursing home

officials in nine States. The report focuses primarily

on the problems Medicaid recipients face when

trying to gain admission to nursing homes but also

notes the access problems encountered by individuals with dementia. According to the GAO report:

Elderly with behavioral problems thought to be

caused by Alzheimer’s disease or other conditions

may have trouble getting into nursing homes whether

they are Medicaid recipients or not. Officials in all

nine States indicated that access problems probably

exist for these people, but none could estimate the

extent of the problems. Residents with Alzheimer’s

disease often disrupt other nursing home residents.

In addition, some Alzheimer’s residents have a

tendency to wander, making them difficult to manage in nursing homes not specifically designed to

allow wandering in a controlled environment. Nursing homes specifically consider behavior during the

admissions process, one California advocate explained, and determine how well the individual

would fit in with the overall environment of the

home. Discharge planners from the Ohio State

University Hospital told us that they have trouble

placing Alzheimer’s patients who are combative or

wander. In Mississippi, Alzheimer’s residents are

considered heavy care residents in a nursing home

market oriented toward light care (emphasis added)

(454).

It is possible that if residents with dementia

received more appropriate nursing home care, they

would, in general, be less difficult to care for, and

nursing home administrators and staff would be

more willing to admit them.

Negative Consequences for the Families of

Residents With Dementia

Problems in the nursing home care provided for

individuals with dementia also have negative consequences for the residents’ families. Many families of

individuals with dementia feel intensely guilty and

sad about having to place the individuals in nursing

homes (45,84,107,128,263,349). Although it might

be assumed that family members who have been

caring for a person with dementia at home would feel

relieved when the person is finally admitted to a

nursing home, at least five studies have shown that

family members’ continue to feel guilty, sad, anxious, and stressed (152,341,349,424,516). These

feelings are probably due primarily to the patient’s

condition and other factors that have made nursing

home placement necessary, but the feelings are

undoubtedly intensified if the family perceives that

the individual is receiving inappropriate or poorquality care. Families are particularly likely to be

anxious if they believe the nursing home staff

members are not knowledgeable about dementia

(84,162,263).

Other negative consequences for families arise

because of the failure of many nursing homes to

recognize and respond to families’ needs. Nursing

homes generally focus their efforts on the residents

and may ignore families and fail to involve them

sufficiently in the residents’ care (349). Families of

nursing home residents with dementia generally

want to be involved in the individuals’ care (46,166,418).

Since many of the primary caregiving functions have

been assumed by the nursing home, family members

may be uncertain about their role. In some instances,

a competitive or adversarial relationship develops

between the family and the staff, with negative

consequences for the family, the resident, and the

staff (45,50,55).

Visiting is frequently more difficult for families

of nursing home residents with dementia than for

families of other nursing home residents (45,125).

Although families of residents with dementia generally visit regularly, at least two studies have found

their visits are shorter and less enjoyable than the

nursing home visits of families of nondemented

residents (310,515). If the nursing home fails to

recognize and respond to this problem, families may

visit less often, again with negative consequences

for everyone involved.

Negative Consequences for Nursing Home Staff

Members

As noted earlier, individuals with dementia are

often difficult for nursing home staff members to

manage because of their behavioral symptoms

(107,167,170,181,191,263,352,359,385). Staff members are most likely to be disturbed by verbally or

physically aggressive and demanding behaviors

(134,191,506). Other resident behaviors that are

disturbing to nursing home staff members are
Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems . 77

resistance to care, wandering, repetitive questions,

agitation, crying, and withdrawal.

The difficulty of caring for residents with dementia causes stress, lowered morale, and burnout for

some, and perhaps many, nursing home staff members (191,263,346,352,398). These staff responses

may in turn lead to increased absenteeism and staff

turnover. To the extent that residents’ behavioral

symptoms are caused or exacerbated by inappropriate nursing home care, the job of staff members is

unnecessarily difficult. Any resulting absenteeism

or staff turnover is unnecessary in the same sense.

Negative Consequences for Nondemented

Nursing Home Residents

Nondemented nursing home residents may also

experience negative consequences because of problems in the care provided for residents with dementia. Behavioral and psychiatric symptoms of residents with dementia, e.g., agitation, restlessness,

screaming repetitive verbalizations, and combativeness, are upsetting for nondemented residents

(46,220,263,268,352,373). The cognitive and functional impairments of residents with dementia may

also be bothersome to nondemented residents. To

the extent that these problems are caused or exacerbated by inappropriate care, they unnecessarily

reduce the quality of life of nondemented residents.

There is disagreement about the overall impact on

nondemented nursing home residents of living in

close proximity with demented residents (270,398).

Some commentators argue nondemented residents

benefit overall from living in close proximity with

demented residents, primarily because of bonding,

the potential for mutual assistance, and reduced staff

expectations for the nondemented residents (69,486,503).

other commentators argue that nondemented residents are harmed overall by living in close proximity

with nondemented residents and that it is unfair to

nondemented residents to be placed in a 24-hour

living situation with someone with dementia

(1,148,220,354,373,510).

The two studies OTA is aware of that address this

issue indicate nondemented nursing home residents

who live in close proximity to residents with

dementia have significantly reduced mental and

emotional status and reduced social interactions.

Wiltzius et al. compared the mental and emotional

status of 20 nondemented nursing home residents

before and 2 weeks after they were moved into a

room with a demented resident (507). Two of the 20

nondemented residents showed signs of cognitive

decline after the move; 17 of the 20 residents

expressed feelings of depression and loneliness; 12

expressed feelings of anxiety and insecurity over

having a roommate who was confused; and 5 were

judged by staff members to be less friendly and more

irritable after the move. In contrast, 2 of the 20

residents became more friendly and expressed concern for their demented roommate. The control

group did not show similar changes over the 2-week

period, but it is not clear from the study report

whether the control group members were moved at

the beginning of the study.

Teresi et al. compared the mental and emotional

status and other characteristics of 72 nondemented

nursing home residents, one-third of whom shared a

room or lived in a room adjacent to a demented

resident (438). After 6 months, the nondemented

residents who shared a room or lived in a room

adjacent to a demented resident were significantly

more likely than the other nondemented residents to

express dissatisfaction with life in general, the unit,

their room, their roommate, and the amount of noise

in the room. They were significantly more likely to

be perceived as depressed by staff members and

significantly less likely to receive visits or phone

calls from family or friends.

It is unclear whether the negative outcomes for

nondemented residents in these two studies are

attributable to characteristics of the demented residents that are caused by their dementing illness or to

characteristics that are caused by problems in the

nursing home care they receive. In either case,

placing the demented and nondemented residents in

separate units would eliminate the cause of the

problems. As discussed in chapter 1, some commentators believe placing individuals with dementia in

special care units may be justifiable solely on the

grounds that it benefits nondemented residents,

assuming the placements do not harm the demented

residents.

Summary

Complaints and concerns about the quality and

appropriateness of the care provided for nursing

home residents with dementia by most nursing

homes are pervasive. In comparison with the prob-
78 ● Special Care Units for People With Alzheimer’s and Other Dementias

lems identified by the Institute of Medicine in its

1986 report on nursing home care for all types of

residents, complaints and concerns about the care

provided for residents with dementia focus more on

lack of staff knowledge about how to respond to

residents’ behavioral symptoms and physical aspects of nursing homes that are perceived to be

inappropriate for individuals with dementia (e.g.,

lack of cues to help residents find their way and lack

of appropriate space for residents to wander). Both

the Institute of Medicine’s report and the literature

on nursing home care for persons with dementia cite

overuse and inappropriate use of psychotropic medications and physical restraints. Although these

problems affect all nursing home residents to some

degree, they are more likely to affect residents with

dementia.

Problems in the care of nursing home residents

with dementia have negative consequences for the

residents, their families, nursing home staff members, and nondemented nursing home residents.

Inappropriate nursing home care tends to exacerbate

the effects of an individual’s dementing disease or

condition. In particular instances, however, it may

be difficult to differentiate effects of an individual’s

dementing disease or condition and effects of

inappropriate care.

Inappropriate nursing home care can cause excess

disability in terms of a resident’s cognitive functioning, mood, self-care abilities, and behavior. To the

extent that inappropriate care causes excess disability, it makes the job of nursing home staff members

more difficult and may therefore be indirectly

responsible for increasing staff stress, absenteeism,

and turnover. Likewise, to the extent that inappropriate care causes or exacerbates the cognitive deficits

and mood and behavioral symptoms of residents

with dementia, it may be indirectly responsible for

reducing the quality of life of nondemented residents

who live with or near demented residents.

CONCLUSION

A very large number and proportion of nursing

home residents have dementia, although many of

them do not have a diagnosis of dementia in their

medical records. Compared with nondemented nursing home residents, residents with dementia are, on

average, older, more functionally impaired, and

more likely to have depressive, psychotic, and

behavioral symptoms. On the other hand, nursing

home residents with dementia are also diverse.

According to national surveys, 5 percent of nursing

home residents with dementia are under age 65; 4 to

46 percent do not have impairments in activities of

daily living, depending on the specific activity; 30

percent do not have depressive symptoms; 64

percent do not have psychotic symptoms; and 40

percent do not have behavioral symptoms. Some are

physically healthy except for their dementia, and

others have many diseases and physical impairments

in addition to their dementia.

For policy purposes, it is important to note that the

diversity of nursing home residents with dementia

makes it unlikely any particular type of unit will be

appropriate for all these individuals. With respect to

the long-range possibilities for special care units

discussed in chapter 1, it is also important to note

that placing all nursing home residents with dementia in special care units would not eliminate residents

with behavioral symptoms from nonspecialized

units since more than one-third of nursing home

residents with behavioral symptoms are not demented.

Special care units have been developed primarily

in response to perceived problems in the care

provided for residents with dementia in many

nursing homes. Some of these problems affect all

nursing home residents and others affect primarily

residents with dementia. Even if the problems that

affect all nursing home residents were solved, some

problems that affect primarily residents with dementia would remain. These problems include lack of

cues to help residents find their way, lack of

appropriate space for residents to wander, and lack

of specific staff training about methods of caring for

individuals with dementia, including appropriate

methods of responding to residents’ behavioral

symptoms.

Special care units promise to provide better

nursing home care than is currently available for

individuals with dementia. By providing better care,

they expect to benefit residents, residents’ families,

nursing home staff, and nondemented residents.

Better care can only alleviate impairments not

directly or inevitably caused by an individual’s

dementing disease or condition. Likewise, better

care for residents can only lessen that portion of

family members’ feelings of guilt, sadness, and

anxiety due to inappropriate care, not the portion of

those feelings caused by a resident’s impairments or
Chapter 2-Nursing Home Residents With Dementia: Characteristics and Problems ● 79

deteriorating condition. Similar considerations apply Research findings with respect to the outcomes of

to the potential impact of better care on nursing special care units should be evaluated with these

home staff members and nondemented residents. considerations in mind.
Chapter 3

Special Care Units For

People With Dementia:

Findings From Descriptive Studies
Contents

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 83

TYPES OF DESCRIPTIVE STUDIES OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . .

NUMBER OF NURSING HOMES THAT HAVE A SPECIAL CARE UNIT . . . . . . . .

CHARACTERISTICS OF NURSING HOMES THAT HAVE A

SPECIAL CARE UNIT ... ... ... ... ... ... ..*. .*. ... ... **. .. *.. ... *c*. .* *a**,

Ownership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . .

Certification Status . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Nursing Home Size . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Nursing Home Location . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

CHARACTERISTICS OF SPECIAL CARE UNITS

. . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Number of Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Age of the Units . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . .

Patient Care Philosophies and Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Physical Design and Other Environmental Features . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Staff Composition and Training . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Staff-to-Resident Ratios . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

staff support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Activity Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Programs for Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Use of Psychotropic Drugs and Other Medications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Use of Physical Restraints . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . .

Admission and Discharge Policies and Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Costs, Charges, and Payment Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

DESCRIPTIVE TYPOLOGIES OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . .

CHARACTERISTICS OF SPECIAL CARE UNIT RESIDENTS . . . . . . . . . . . . . . . . . . .

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

FORTHCOMING DESCRIPTIVE INFORMATION ABOUT SPECIAL

+.. .

CARE UNITS AND SPECIAL CARE UNIT RESIDENTS . . . . . . . . . . . . . . . . . . . . . . .

83

85

88

88

89

89

90

90

90

90

91

92

94

95

95

95

96

96

96

97

98

99

101

103

106

Tables

Table Page

3-1. Descriptive Studies of Special Care Units... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 84

3-2. Characteristics of Nursing Homes That Had a Special Care Unit in

1987 or Planned To Have a Special Care Unit by 1991, United States, 1987..... 88

3-3. Proportion of Special Care Units That Encouraged or Discouraged

Admission of Residents With Certain Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98

3-4. Ratings on Some Variables for Eight Types of Special Care Units . . . . . . . . . . . . . . . 100

3-5. Impairments in Activities of Daily Living Among Special Care Unit Residents,

Residents With Dementia in Nonspecialized Nursing Home Units, and

All Nursing Home Residents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102

3-6. Conclusions From Descriptive Studies of Special Care Units . . . . . . . . . . . . . . . . . . . 104
Chapter 3

Special Care Units For People With Dementia:

Findings From Descriptive Studies

INTRODUCTION

Much of the existing literature on special care

units consists of reports about an individual unit.

These reports usually describe the physical design

features, patient care philosophy, activity programs,

and other characteristics of the unit that make it

special in the view of the report authors. The reports

often present anecdotal evidence of the positive

outcomes of the unit and advocate the development

of more special care units like the one being

described.

Descriptive reports on individual special care

units are interesting in that they convey the authors’

commitment to providing better care for individuals

with dementia and the authors’ perceptions about

what constitutes appropriate nursing home care for

these individuals. On the other hand, the anecdotal

evidence presented in these reports about the positive outcomes of individual special care units is not

adequate to evaluate their effectiveness. Moreover,

many of the descriptive reports on individual special

care units do not provide enough detailed information about the characteristics of the units to allow a

meaningful comparison of different units.

Research on special care units is in an early stage,

but in the past few years, a number of studies of

special care units have been conducted. Some of the

studies are descriptive, and others are evaluative.

The descriptive studies provide information about

the number and characteristics of special care units

nationally and in certain geographic areas and about

the similarities and differences among special care

units and between special care units and nonspecialized nursing home units. The evaluative studies

attempt to measure the effectiveness of one or more

special care units in terms of changes in aspects of

their residents’ condition and functioning over time.

This chapter discusses what is known about

special care units from the available descriptive

studies. Chapter 4 discusses the findings of the

available evaluative studies. The findings of these

studies are discussed in some detail because they

provide a basis for informed policy decisions about

the development of special regulations and reimbursement for special care units, about the need for

and content of consumer education materials on

special care units, and about the future direction and

level of government support for research on special

care units.

Table 3-6 at the end of this chapter lists OTA’s

conclusions from the descriptive studies discussed

in the chapter. (An identical list appears in table 1-2

inch. 1). Probably the most important conclusion for

policy purposes is the diversity of existing units. It

is also clear from available studies that although

most special care units have a method of locking or

otherwise securing the unit, many units do not

incorporate the other physical design features recommended in the special care unit literature. Moreover, at least one-quarter of existing units report they

do not provide special training for their staff

members. On the positive side, physical restraints

are used far less in special care units than in other

nursing home units. On average, special care units

also have fewer residents and more staff members

per resident than other nursing home units, and

special care unit residents are probably more likely

than individuals with dementia in nonspecialized

units to participate in activity programs.

TYPES OF DESCRIPTIVE STUDIES

OF SPECIAL CARE UNITS

Descriptive studies of special care units include

studies of three types:

. studies of nursing homes that include questions

about special care units,

. studies that compare selected special care units,

and

. studies that compare selected special care units

and selected nonspecialized nursing home units.

Tables 3-la, 3-lb, and 3-lc list the descriptive

studies of each type for which conclusions are

currently available at least in draft form. To OTA’s

knowledge, these tables include all such studies. For

each study, the tables identify the citation, the year

the study was conducted, the source of funding for

the study if given in the study report, and the general

method of the study. The following sections review

–83-
84 ● Special Care Units for People with Alzheimer’s and Other Dementias

Table 3-l—Descriptive Studies of Special Care Units

a. Descriptive Studies of Nursing Homes That Include Questions About Special Care Units

Year of

Citation the study Funding source Method of the study

Hepburn et. al.,

1988

Holmes et al.,

1992

Leon et. al.,

1990

Mayers and

Block, 1990

1986 No funding source reported Mail survey of all 438 licensed nursing homes in Minnesota, with a 76 percent

response rate.

1990 See note below Mail and telephone survey of all nursing homes in 5 northeastern States

(Connecticut, Massachusetts, New Jersey, New York, and Pennsylvania),

with an 81 percent response rate.

1987 Agency for Health Care On-site survey of a nationally representative sample of 759 nursing homes,

Policy and Research using questionnaires and face-to-face interviews with facility administrators

and staff.

1989 No funding source reported Mail survey of all 305 nursing homes in Washington State, with a 50 percent

response rate.

b. Descriptive Studies That Compare Selected Special Care Units

Cairl et. al., 1990 Administration on Aging Study comparing 13 nursing home special care units in 10 counties in west

1991 central Florida, using an interview schedule for face-to-face interviews with

facility staff.

Hyde, 1989 not University of Massachusetts, Study of 7 nursing home special care units in eastern Massachusetts, using

reported Gerontology Institute a semi-structured interview schedule.

Knoefel, 1989 Department of Veterans Study of 5 special care units in VA and nonVA facilities, using chart reviews

unpublished Affairs and an interview schedule.

manuscript

Mace, 1991 1988-1989 No funding source reported Mail survey of 12 nursing home special care units.

Ohta and not No funding source reported Study of 16 nursing home special care units, using published and

Ohta, 1988 reported unpublished reports, facility manuals, and site visits.

Weiner and 1985-1986 Partial funding from the Mail survey of 22 nursing home special care units and several specialized

Reingoid, 1989 Brookdale Foundation programs in other settings.

White and 1987 Oregon State University Mail survey of 99 nursing home special care units in 34 States.

Kwon, 1991

c. Descriptive Studies That Compare Selected Special Care Units and Selected Nonspecialized Nursing Home Units

Lindman et al., 1990

1991

Mathew et. al., Not

1988 reported

Rovner et. al., Not

no date reported

Sloane et. al., 1987-1989

1990

Riter and Fries, 1990

1992

California Department of

Health Services

No funding source reported

No funding source reported

Alzheimer’s Association

Health Care Financing Administration

Study comparing 11 individuals with dementia in 2 nursing home special

care units, 11 individuals with dementia in nonspecialized units in 2 nursing

homes, and 8 individuals with dementia in 2 residential care facilities, using

chart reviews, questionnaires, and patient observation.

Study comparing 13 individuals with dementia in one nursing home special

care unit and 34 individuals with dementia in nonspecialized units in 2

nursing homes, using chart reviews and patient observation and examination.

Study comparing 19 individuals with dementia in one nursing home special

care unit and 20 individuals with dementia in nonspecialized units of the

same nursing home, using chart reviews and patient observation and

examination.

Study comparing 10 individuals with dementia in each of 31 nursing home

special care units and 32 nonspecialized nursing home units in 5 States,

using chart reviews, questionnaires, and patient observation.

Study comparing 127 individuals with dementia in 10 nursing home special

care units and 103 individuals with dementia in nonspecialized units in the

same nursing homes, using chart reviews, questionnaires, and patient

observation.

NOTE: Thisstudywasoonducted by researchers atthe Hebrew Home forthe Aged to obtain information about special care units in five States that would allow

them to identify a sample of units for their study of the impact of special care units; the latter study is funded by the National Institute on Aging, but no

findings are yet available from it.

SOURCE: Office of Technology Assessment, 1992.
Chapter 3-Findings From Descriptive Studies ● 85

the findings of these studies with respect to the

number of nursing homes with a special care unit,

the characteristics of these nursing homes, the

characteristics of the special care units, and the

characteristics of their residents.

In 1991, researchers at George Washington University in Washington, DC, mailed a questionnaire

about special care units to more than 17,000 nursing

homes nationwide (246). Results of this survey with

respect to the number of nursing homes that have a

special care unit are noted in the following section.

As of May 1992, the other findings of the survey

were still being analyzed. Once available, these

findings will greatly expand existing information

about special care units. OTA is aware of two other

sources of forthcoming descriptive information about

special care units which are described in the last

section of the chapter.

NUMBER OF NURSING HOMES

THAT HAVE A SPECIAL

CARE UNIT

Five studies conducted between 1987 and 1991

provide information about the number and proportion of nursing homes that have a special care unit.

The five studies are discussed in this section.

Because of differences among the studies and

definitional questions, no firm conclusion can be

drawn at this time about the number or proportion of

nursing homes that have a special care unit. Based on

the results of the two most recent studies, OTA

estimates that in 1991, 10 percent of all nursing

homes in the United States had a special care unit.

This proportion varies among States, and at least in

some States, it includes nursing homes that group

some of their residents with dementia in clusters in

units that also serve nondemented residents, rather

than placing the residents in an entirely separate

special care unit.

The 1987 National Medical Expenditure Survey

conducted by the Agency for Health Care Policy and

Research is, thus far, the only study of a nationally

representative sample of nursing homes that has

included questions about special care units. The

sampling frame for the study was 22,064 nursing

homes and personal care homes, including all

Medicare and Medicaid-certified nursing homes and

all State-licensed and otherwise officially recognized nursing and personal care homes that: 1) have

three or more beds, 2) provide personal care, and 3)

are not primarily facilities for the mentally ill or

mentally retarded. Eight percent of the 759 facilities

in the survey sample reported having a special care

unit (249). Extrapolated to the 22,064 facilities in the

sampling frame, this finding indicates that 1668

nursing and personal care homes in the U.S. had a

special care unit in 1987. These units were estimated

to contain more than 53,000 beds.

The 1987 National Medical Expenditure Survey

also found that many nursing and personal care

homes had plans to establish a special care unit. The

survey data indicate that in 1987, 1444 facilities that

did not have a special care unit intended to establish

one by 1991. Moreover, 535 of the facilities that

already had a special care unit planned to expand

their unit by 1991. If all these plans had materialized,

more than 3100 nursing and personal care homes (14

percent of the facilities in the survey sampling

frame) would have had a special care unit by 1991,

and these units would have contained almost 100,000

beds.

When published in 1990, the figures from the

1987 National Medical Expenditure Survey were

much higher than any previous estimates, but they

were generally accepted as accurate. A few public

officials and other individuals in some States told

OTA informally that they did not believe as many as

8 percent of the nursing homes in their State had a

special care unit in 1987 or that 14 percent would in

1991. Data from the 1987 National Medical Expenditure Survey cannot be broken down by State (246),

so the survey data cannot be used to determine the

number or proportion of nursing homes in particular

States that have a special care unit. The data do show

that the proportion of nursing homes with a special

care unit varies in different regions of the country,

and findings of several studies discussed below

indicate the proportion varies by State.

To OTA’s knowledge, four studies have attempted to survey all nursing homes in a given

geographic area and thus to determine the total

number of nursing homes that have a special care

unit in that area. One of the four studies, a mail

survey conducted from 1989 to 1990 of all 305

nursing homes in Washington State found that only

3 percent of the 154 facilities that responded to the

survey (or about 1.5 percent of all nursing homes in

the State) reported having a special care unit (294).

A 1986 mail survey of all 438 nursing homes in

Minnesota found that 7 percent of the 332 facilities
86 ● Special Care Units for People With Alzheimer’s and Other Dementias

that responded to the survey reported having a

special care unit (18 1). An additional 7 percent of the

responding facilities reported they planned to establish a special care unit in the next 2 to 3 years. If these

plans had materialized, 14 percent of the responding

facilities (or 11 percent of all nursing homes in

Minnesota) would have had a special care unit by

1988 or 1989.

In 1990, researchers at the Hebrew Home for the

Aged in Riverdale, NY, mailed a questionnaire

about special care units to all nursing homes in five

northeastern States (194). Seven percent of the 2370

nursing homes in the 5 States reported having at least

one special care unit. An additional 5 percent of the

nursing homes reported that although they did not

have a special care unit, they did place some of their

residents with dementia in clusters in units that also

served nondemented residents. Thus, a total of 12

percent of the facilities reported using some method

to physically group residents with dementia-either

in a special care unit or in a cluster in units that also

serve nondemented residents. A telephone followup

to a random sample of 150 of the nursing homes

found that in 15 of the facilities (10 percent), the

nursing home administrator and the director of

nursing disagreed about whether their facility had a

special care unit. The researchers reduced their

previous estimate to eliminate these questionable

units. Their conservative conclusion is that in 1990,

11 percent of all nursing homes in the 5 States had

at least one special care unit or cluster unit.

As noted earlier, in 1991, researchers at George

Washington University mailed a questionnaire about

special care units to about 17,000 nursing homes

nationwide, including all nursing homes thought to

have 30 or more beds and to serve primarily elderly

people. After the elimination of facilities that had

closed or did not meet these criteria, there were

15,490 potential respondents (246). Four thousand

questionnaires were completed and returned. The

researchers telephoned most of the nursing homes

that did not return the questionnaire. As of May

1992, information was available on more than

14,000 nursing homes (90 percent of all nursing

homes in the sampling frame). Based on this

information, the researchers concluded that in 1991,

1463 nursing homes had a special care unit or a

special program for residents with dementia. Ninety

percent of the 1463 nursing homes with a special

care unit or special program reported the unit or

program was in a physically distinct part of the

facility. If only these nursing homes are counted as

having a special care unit, 1318 nursing homes (9

percent of all nursing homes in the sampling frame)

had a special care unit in 1991.

The George Washington University survey found

great differences among States in the proportion of

nursing homes in the State that had a special care

unit or special program for residents with dementia

(247). Preliminary analysis of the data shows that in

some States a surprisingly high proportion of

nursing homes reported having a special care unit or

special program for residents with dementia: 36

percent of the nursing homes in Arizona and 27

percent of the nursing homes in Utah reported

having such a unit or program.

The George Washington University survey also

found that many of the nursing homes that did not

have a special care unit in 1991 planned to establish

one, and some of the nursing homes that did have a

special care unit planned to expand it (247). Preliminary analysis of the survey data shows that 1000 to

1600 of the nursing homes (6 to 10 percent of all

nursing homes in the sampling frame) planned to

establish a new special care unit or expand their

existing unit.

For several reasons, the results of the five studies

described in this section are not precisely comparable. First, the studies sampled different types of

facilities (i.e., nursing homes and personal care

homes, all nursing homes, or nursing homes with

more than 30 beds). Second, the studies identified

different types of units (i.e., special care units and

cluster units), and some of the studies also included

special programs. Third, the studies covered different geographic areas. Lastly, the studies were

conducted over a 4-year period during which the

number and proportion of nursing homes with a

special care unit undoubtedly increased.

The preliminary estimate from the 1991 George

Washington University survey and the conclusion of

the 1990 survey of all nursing homes in 5 northeastern States show that 9 to 11 percent of the nursing

homes had a special care unit, a cluster unit, or a

special program for residents with dementia. Almost

half the units identified in the 1990 survey of all

nursing homes in five northeastern States were

cluster units (194). It is unclear whether the 1463

special care units and special programs identified in

the George Washington University survey include

cluster units, and if so, how many.
Chapter 3--Findings From Descriptive Studies . 87

The biggest discrepancy in the findings of the five

studies is between the total number of special care

units and special programs identified by the 1987

National Medical Expenditure Survey (1668 units

and programs) and the total number identified in the

1991 George Washington University survey (1463

units and programs). These figures suggest there was

a decrease in the number of special care units and

programs between 1987 and 1991, a highly unlikely

conclusion. The figures lend themselves to two other

explanations:

1. the 1987 National Medical Expenditure Survey overestimated the number of special care

units, and

2. the 1991 George Washington University study

underestimated the number of special care

units.

One or both of these explanations could be correct.l

The 1987 National Medical Expenditure Survey

and the 1991 George Washington University survey

asked about special care units and special programs.

The researchers who worked on the special care unit

portion of the 1987 National Medical Expenditure

Survey concluded on the basis of the survey findings

and the results of other studies that virtually all the

facilities that reported having a special care unit or

a special program in 1987 had at least one special

care unit (246). As noted earlier, 90 percent of the

1463 nursing homes identified in the 1991 George

Washington University survey as having a special

care unit or program reported their unit or program

was in a physically distinct part of the facility. If

only these nursing homes are counted as having a

special care unit, the discrepancy between the

findings of the 1987 and 1991 surveys is bigger and

more difficult to explain.

An obvious obstacle to developing accurate

figures on the number of nursing homes with a

special care unit is the lack of a standard definition

of the term special care unit. All the figures cited in

this section are based on self-report, and most reflect

the opinions of the nursing home administrators and

other survey respondents about what a special care

unit is. The 1990 survey of all nursing homes in 5

northeastern States found that only 49 percent of the

nursing homes that placed their residents with

dementia in a separate unit and only 12 percent of the

nursing homes that placed their residents with

dementia in clusters in nonspecialized units used the

term “special care” for these arrangements (194).

Moreover, as noted earlier, in 10 percent of the 150

facilities contacted by telephone, the nursing home

administrator and the director of nursing disagreed

about whether their facility had a special care unit.

Having a standard definition of the term special

care unit would facilitate the development of

accurate figures on the number of nursing homes

with a unit that met that definition. On the other

hand, units that did not meet the definition would not

be counted. Since research on special care units is in

an early stage, it is important not to define away care

arrangements that may turn out to be variants of

special care units. In this context, it should be noted

that the first information about the large number of

cluster units in some States was derived from a study

that deliberately did not define the term special care

unit and instead asked a very broad question about

the “types of living arrangements available for

cognitively impaired (demented) residents’ in the

facility (177). Although cluster units do not meet

some definitions of the term special care unit,

information on cluster units presented later in this

chapter shows that significant proportions of these

units incorporate features said to be important in

special care units (e.g., physical design features,

special staff training, staff support groups, family

support groups, and formal admission and discharge

criteria).

I n summary, findings of the 1987 National

Medical Expenditure Survey indicated that 8 percent

of all nursing homes had a special care unit in 1987

and that if plans reported in 1987 materialized, 14

percent of all nursing homes would have a special

care unit in 1991. Results of several studies conducted since 1987 suggest the figures from the 1987

National Medical Expenditure Survey overestimate

the number and proportion of nursing homes that had

a special care unit in 1987 and the number and

proportion that would have a special care unit by

1991. Based on available data, OTA estimates that

in 1991, 10 percent of nursing homes in the United

States had a special care unit. This proportion varies

in different States, and in at least some States, it

1 Another theoretically possible but unlikely explanation is that many of the special care units included in the 1987 figure are in personal care homes

or nursing homes with fewerthau 30 beds which were included in the 1987 National Medical Expenditure Survey but not in the 1991 George Washington

University survey.
88 . Special Care Units for People With Alzheimer’s and Other Dementias

includes nursing homes that group some of their

residents with dementia in clusters in units that also

serve nondemented residents.

States (194), and a University of North Carolina

study conducted from 1987 to 1989 that compared

31 randomly selected special care units and 32

matched nonspecialized units in 5 States (413).

CHARACTERISTICS OF

NURSING HOMES THAT HAVE

A SPECIAL CARE UNIT

Nursing homes that have a special care unit differ

from other nursing homes in their ownership,

certification status, size, and geographic location.

Table 3-2 presents information from the 1987

National Medical Expenditure Survey on each of

these characteristics for all nursing homes and

personal care homes in the survey sample, for the

nursing and personal care homes that reported

having a special care unit in 1987, and for the

nursing and personal care homes that reported they

would have a special care unit by 1991 (248). Other

sources of information about the characteristics of

nursing homes with a special care unit are the 1986

survey of nursing homes in Minnesota (181), the

1990 survey of all nursing homes in 5 northeastern

Ownership

As shown in table 3-2, the National Medical

Expenditure Survey found that 60 percent of the

nursing and personal care homes that reported

having a special care unit in 1987 were privately

owned, for-profit facilities; 21 percent were privately owned, nonprofit facilities, and 19 percent

were publicly owned (249). The proportion of

for-profit facilities that reported having a special

care unit in 1987 (60 percent) was smaller than might

be expected, given that 73 percent of all facilities in

the survey sample were for-profit facilities. In

contrast, the proportion of publicly owned nursing

homes that reported having a special care unit (19

percent) was greater than might be expected, given

that only 5 percent of all facilities in the survey

sample were publicly owned.

Table 3-2-Characteristics of Nursing Homes That Had a Special Care Unit in 1987 or Planned To Have a

Special Care Unit by 1991, United States, 1987

Number of nursing homes Number of nursing home beds

with a with a In special In special

special care special care care units care units

Characteristic of facilities Total unit in 1987 unit by 1991 Total in 1987 by 1991

Totals 22,064 1,668 3,112 1,645,861 53,798 99,698

Percent of total Percent of total

Ownership

For profit, . . . . . . . . . . . . . . . . .

Independent . . . . . . . . . . . .

Multi-facility . . . . . . . . . . . .

Nonprofit . . . . . . . . . . . . . . . . .

Public . . . . . . . . . . . . . . . . . . . .

73%

35

38

23

5

60%

27

33

2 1

b

19b

57%a

28

29

28

15

67%

24

44

24

9

69%

31

38

18

13b

51%

21

29

38

1 2

b

SNF Certification

Yes . . . . . . . . . . . . . . . . . . . . . .

No . . . . . . . . . . . . . . . . . . . . . . .

40

60

75a

25a

70a

30a

64

36

76

24

81

19’

Facility size (number of beds)

<1oo . . . . . . . . . . . . . . . . . . . . .

100-149 . . . . . . . . . . . . . . . . . .

150+ . . . . . . . . . . . . . . . . . . . . .

69

20

11

45

28

26a

47a

26

27a

36

32

32

34

32

34

41

24

36

Region

Northeast . . . . . . . . . . . . . . . . .

Mideast . . . . . . . . . . . . . . . . . . .

South . . . . . . . . . . . . . . . . . . . .

West . . . . . . . . . . . . . . . . . . . . .

19

29

30

22

27

16a

22

37

30

22

23

26

22

31

30

17

22

18a

23

37a

20

29a

21

29

astatistial[y signifi~nt in comparison to the total column.

bRelative standard error X30 w~ent.

SOURCE: J. Imon, D. Potter, and P. Cunningham, “Avaiiabiiity of Special Nursing Home Programs for Aizheimer’s Disease Patients,” Ametkan Journa/ of

Akheimer’s Care and Related Disorders and Research 6(1):2-11, 1991.
Chapter 3-Findings From Descriptive Studies ● 89

In terms of bed capacity, 69 percent of the special

care unit beds were in for-profit facilities in 1987; 18

percent were in nonprofit facilities, and 13 percent

were in publicly owned facilities (see table 3-2).

Thus, the proportion of special care unit bed capacity

in for-profit facilities (69 percent) was about the

same as would be expected, given that 67 percent of

all bed capacity was in for-profit facilities. Special

care unit bed capacity in publicly owned facilities

(13 percent) was slightly greater than would be

expected, given that only 9 percent of all bed

capacity was in publicly owned facilities.

The greatest growth in special care units and

special care unit bed capacity from 1987 to 1991 was

projected to occur in nonprofit facilities. Whereas in

1987,21 percent of special care units and 18 percent

of special care unit beds were in nonprofit facilities,

by 1991, 28 percent of special care units and 38

percent of special care unit beds were projected to be

in nonprofit facilities (see table 3-2).

In 1987, about one-third of all special care units

and 38 percent of all special care unit beds were in

nursing homes owned by multi-facility corporations

(see table 3-2). These proportions were projected to

decrease slightly by 1991. The Hillhaven Corp. of

Takoma, WA, the Nation’s second largest multifacility nursing home corporation, was probably the

first such corporation to establish special care units

for persons with dementia. As of late 1990, 56

Hillhaven-owned nursing homes had a special care

unit, and these special care units contained 1283

beds (337).

OTA contacted a few other multi-facility nursing

home corporations to find out how many of the

nursing homes they own have a special care unit.

Manor Care Corp. of Silver Spring, MD, reported

that as of late 1990, 51 of its nursing homes had a

special care unit (157). ARA Living Centers of

Houston, TX, reported 35 of its nursing homes had

a special care unit (3). Unicare Health Facilities of

Milwaukee, WI, reported 15 of its nursing homes

had a special care unit (374).

Data from the 1987 National Medical Expenditure

Survey indicate that by 1991, multi-facility nursing

home corporations planned to have more than 900

nursing homes with a special care unit. If these plans

had materialized, the four corporations just mentioned would account for only 17 percent (157 out of

900) of all such nursing homes. These figures

indicate that ownership of special care units is not

dominated by a small number of multi-facility

nursing home corporations.

A 1989 survey by the U.S. Department of

Veterans Affairs (VA) found that 31 of the 172 VA

medical centers nationwide had one or more special

care units (159). The VA has issued no formal

department-wide policies on special care units.

Thus, the special care units identified in&e survey

were established entirely on the initiative of the

individual VA medical centers. The 31 units identified by the 1989 survey were in acute care hospital

units, intermediate care units, and long-term care

units (103).

Certification Status

According to the 1987 National Medical Expenditure Survey, nursing homes that were certified by

Medicare or Medicaid as skilled nursing facilities

(SNFs) were far more likely than other nursing

homes to have a special care unit (248). As shown in

table 3-2, this pattern was projected to continue to

1991. A telephone survey of all nursing homes in

five States conducted in 1987 and 1988 also found

SNFs were more likely than other nursing homes to

have a special care unit (413).2

Nursing Home Size

As shown in table 3-2, larger nursing and personal

care homes are far more likely than smaller facilities

to have a special care unit. This finding from the

1987 National Medical Expenditure Survey agrees

with the results of the 1986 survey of nursing homes

in Minnesota which found that 18 percent of nursing

homes with more than 100 beds had a special care

unit, compared with only 2 percent of nursing homes

with less than 100 beds (181). The University of

North Carolina study of 31 randomly selected

special care units in 5 States found the nursing

homes with a special care unit had an average of 192

beds, compared with an average of 92 beds for all

U.S. nursing homes (413). The 1990 study of all

nursing homes in 5 northeastern States found that

nursing homes with a special care unit had an

z me SNF categow for Medicaid cetiication of nursing homes was eliminated in 1990 due to the implementation Of Ceh prOViSiOnS Of tie

Omnibus Budget Reconciliation Act of 1987 (OBIG4-87). As a result the distinction between SNFS and other nursing homes will not be important in

future special care unit research.
90 ● Special Care Units for People With Alzheimer’s and Other Dementias

average of 251 beds, compared with an average of

166 beds for nursing homes with a cluster unit, and

130 beds for nursing homes without either a special

care unit or a cluster unit (194).

Nursing Home Location

According to the 1987 National Medical Expenditure Survey, nursing and personal care homes in the

West were more likely than nursing and personal

care homes in other regions of the country to have a

special care unit (248). As shown in table 3-2, 22

percent of all the facilities and 37 percent of the

facilities with a special care unit were in the West.

In contrast, 29 percent of all the facilities but only 16

percent of the facilities with a special care unit were

in the Midwest. Projections for 1991 suggested

special care units would be more evenly distributed

across the regions.

CHARACTERISTICS OF SPECIAL

CARE UNITS

Existing special care units are extremely diverse.

Descriptive studies show that special care units vary

in the number of residents they serve, their patient

care philosophies and goals, physical design and

other environmental features, staff composition and

training, staff-to-resident ratios, provision of staff

support groups, activity programs, programs for

families, use of psychotropic and other medications,

use of physical restraints, admission and discharge

policies and practices, and cost. Findings in each of

these areas are discussed in the following sections.

Each of the descriptive studies listed in tables

3-la, 3-lb, and 3-lc provides some information

about the characteristics of existing special care

units. The four nursing home surveys that have

included questions about special care units (see table

3-la) provide information about certain characteristics of the units. With the exception of the 1990

survey of all nursing homes in five northeastern

States (194), however, these nursing home surveys

have included very few questions about special care

units, beyond asking whether the facility has such a

unit.

The seven studies that compare selected special

care units (see table 3-lb) provide much more

comprehensive information about the units. The

findings of these studies are particularly useful in

pointing out the diversity of existing units. On the

other hand, none of the studies used a random

sample of special care units, so their findings with

respect to the proportion of units with certain

characteristics are less useful. Even the findings of

studies with large sample sizes, e.g., White and

Kwon’s findings based on a sample of 99 special

care units (492), cannot be generalized to all special

care units since they are based on nonrandom

samples.

The five studies that compare selected special

care units and selected nonspecialized nursing home

units (see table 3-lc) are useful in identifying

characteristics that distinguish the two types of

units. Three of these studies have very small samples

(1 to 2 special care units and 1 to 4 nonspecialized

units) (256,292,391). The other two studies have

much larger samples (382,413). The study done by

researchers at the University of North Carolina is

especially valuable because the special care units

were randomly selected from all special care units in

the five States studied (413).

Number of Residents

It is often said that nursing home residents with

dementia can be better cared for in small rather than

large groups, and some commentators have suggested 8 to 20 residents may be ideal (63,93,109).

Studies of nonrandom samples of special care units

show the number of residents in individual units

varies greatly. The 16 special care units studied by

Ohta and Ohta had from 10 to 49 residents (332).

The 7 special care units studied by Hyde had from 12

to 41 residents (199), and the 12 special care units

studied by Mace and Coons had from 8 to 47

residents (275). Although these ranges are wide,

some of the units clearly had a very small number of

residents (8 to 12 individuals). The 1990 survey of

all nursing homes in 5 northeastern States found that

special care units had an average of 37 beds (194).

Data from the University of North Carolina study

of 31 randomly selected special care units and 32

matched nonspecialized nursing home units show

that on average the special care units had fewer

residents than the nonspecialized units (36 vs. 59

residents, respectively) (413). The special care units

also had fewer rooms and a larger proportion of

private rooms—i.e. rooms for only one resident.

Age of the Units

Available data indicate most special care units

have been established since 1983, although a few
Chapter 3--Findings From Descriptive Studies ● 91

units have been in operation much longer. The

Minnesota nursing homes with a special care unit in

1986 reported that the units had been in operation for

an average of 2 years (181). Likewise, the 31 special

care units included in the University of North

Carolina study conducted from 1987 to 1989 had

been in operation an average of 4.6 years: the special

care units in nonprofit facilities had been in operation twice as long as the special care units in

for-profit facilities (6 years vs. 3 years, respectively)

(413). On the other hand, one of the 31 special care

units in the University of North Carolina study had

been in operation for 25 years. Likewise, the samples

of special care units studied by Weiner and Reingold

and White and Kwon each included one unit that had

been in operation for 20 years (485,494).

Patient Care Philosophies and Goals

None of the descriptive studies that have used a

random sample of special care units or attempted to

survey all nursing homes in a given geographic area

has addressed the question of the units’ patient care

philosophies or goals.3 Four studies that used

nonrandom samples have addressed this question

(64,199,332,485). Based on a nonrandom sample of

22 special care units, Weiner and Reingold identified nine goals of the units (485). The nine goals are:

1.

2.

3.

4.

5.

6.

7.

8.

to provide a safe, secure, and supportive

environment for residents with dementia;

to reduce feelings of anxiety and confusion

through environmental and communication

support;

to help residents reach or maintain optimal

levels of physical and cognitive functioning;

to provide holistic patient care;

to offer staff members understanding, training,

education, and freedom from excessive stress;

to recognize that individuals with dementia are

entitled to experiences and activities that will

enhance the quality of their lives;

to recognize that individuals with dementia are

autonomous and can expect that their special

needs and those of their families will be met

with sensitivity and appropriateness;

to provide patients with opportunities to succeed, which will build their sense of self-

-esteem, dignity, and hope, and

9. to improve the environment and community of

nondemented residents of the facility (485).

The number of units that professed each of these

goals and the mix of goals for individual units was

not noted in the study report.

Several topologies of special care units have been

proposed based on the units’ philosophy and goals.

These topologies point out one facet of the diversity

of existing units. From their study of a nonrandom

sample of 16 special care units, Ohta and Ohta

identified three types of special care units based on

the units’ goals: 1) units that have as their primary

goal to meet residents’ physical care needs; 2) units

that have as their primary goals to maintain residents’ ability to perform activities of daily living to

the greatest extent possible and to minimize memory

impairments and behavioral symptoms; and 3) units

that have as their primary goal to maintain residents’

quality of life, while also maintaining their ability to

perform activities of daily living and minimizing

their memory impairments and behavioral symptoms (332).

Another typology based on the philosophy and

goals of a nonrandom sample of seven special care

units posited two types of units: 1) units that adopt

a medical model of care and focus primarily on

hygiene and physical aspects of care; and 2) units

that focus more on psychosocial aspects of care,

including continuity with a resident’s family and

previous life (199). The author of this study also

distinguished between special care units that have as

a goal to maintain their residents’ functioning to the

greatest extent possible, with the expectation that

some residents’ functioning might improve and, in

contrast, special care units that emphasize the

progressive nature of most diseases that cause

dementia and have as a goal to allow the residents to

decline over time with as much comfort and dignity

as possible.

Lastly, from their study of a nonrandom sample of

13 special care units in Florida, Cairl et al. identified

two types of units: 1) units in which the primary goal

was behavior management-that is, to reduce resident anxiety, wandering, and behavioral symptoms,

and 2) units in which the primary goal was to

maximize residents’ functioning while preserving

their individual dignity (64).

s me 19gI @rge Wmhi.ugton un.iversi~ survey asked whether the special care units or special programs it identified operated uder a different

philosophy of care from the rest of the facility. The survey responses with respect to this question have not yet been analyzed (246).

328-405 - 92 - 4 QL 3
92 . Special Care Units for People With Alzheimer’s and Other Dementias

These topologies are useful in thinking about the

differences among special care units. It is unclear,

however, which of the topologies best represents the

differences among existing special care units in their

patient care philosophies and goals. It is also unclear

whether the topologies encompass the full variation

in philosophies and goals among existing special

care units

are based

units.

since the studies on which the topologies

used nonrandom samples of special care

Physical Design and Other

Environmental Features

As discussed in chapter 1, the literature on

specialized nursing home care for individuals with

dementia emphasizes the importance of physical

environment in the care of these individuals. Design

features and other physical characteristics of a

nursing home are believed to be important for all

residents, but especially important for residents with

dementia. It is said that the more severe an individual’s impairment, the greater the negative effects of

an inappropriate environment and, conversely, the

greater the positive effects of an appropriate environment (241).

A variety of physical design and other environmental features have been proposed for special care

units. Most of these features are intended to compensate directly for residents’ cognitive impairments,

but some are intended to compensate for physical

impairments that may exacerbate an individual’s

fictional deficits, e.g., reduced visual acuity that

can interfere with the individual’s perceptions of the

environment and thus add to his or her confusion.

Some of the design and other environmental

features that have been proposed for special care

units are structural, such as arrangement of residents’ bedrooms around a common, central area and

location of the nurses’ station to facilitate resident

supervision and staff/resident interaction. Unless a

unit is originally constructed with these features,

extensive remodeling is required to incorporate

them. Other physical design features, e.g., a safe

space for wandering, are more easily added to an

existing facility, but still require some remodeling.

A third type of physical design features can be

incorporated in an existing facility without any

remodeling. These features include: an alarm or

locking system; environmental cues, such as color

coding of rooms and corridors to help residents find

their way around the unit; and personal markers,

such as a picture of the resident placed near the door

to his or her room.

Available data indicate that most existing special

care units were not originally constructed as special

care units and that at least one-fifth were not even

remodeled for this purpose. Of the 31 randomly

selected special care units in the University of North

Carolina study, 21 percent were originally constructed as special care units; 59 percent were

remodeled for this purpose; and 21 percent were

created without either original construction or remodeling (415). One-fifth of the 99 nonrandomly

selected special care units studied by White and

Kwon were created without either original construction or remodeling (494). Of the special care units

identified by the 1991 George Washington University survey, more than half were created without

either original construction or remodeling (247).

Clearly, these types of units cannot incorporate

physical design features that require either original

construction or remodeling.

The most frequently used physical design features

in special care units are alarm systems to alert staff

when residents try to leave a unit and locking

systems to stop residents from leaving the unit. The

1990 survey of all nursing homes in 5 northeastern

States found 86 percent of special care units and 78

percent of cluster units had an alarm system or

another method for securing exits (194). Likewise,

among Minnesota nursing homes that had a special

care unit in 1986,73 percent reported the unit had an

alarm system, and 41 percent reported the unit was

locked (181).

The 1990 survey of all nursing homes in five

northeastern States included questions about two

other physical design features: environmental cues,

such as color coding of rooms and corridors, and

modifications to the nurses’ station. The survey

found that 44 percent of the facilities with a special

care unit were using environmental cues, and 35

percent had modified their nurses’ station (194). Of

the facilities with a cluster unit, 34 percent were

using environmental cues, and 13 percent had

modified their nurses’ stations. Thus, although some

facilities had incorporated each of these physical

design features, the majority had not.

Findings of descriptive studies based on nonrandom samples of special care units illustrate the

diversity of the units in their physical design features
Chapter 3-Findings From Descriptive Studies . 93

(64,199,332,275,485,494). In their 1985-86 study of

a nonrandom sample of 22 special care units, Weiner

and Reingold found, for example, that 40 percent of

the units were using orientation aids, such as large

calendars and daily schedules; by implication, 60

percent were not (485). Twenty-seven percent of the

units had increased the communal space on the unit;

23 percent had color-coded corridors and furniture;

15 percent had an outside garden or walkway; and 4

percent had small areas for group activities. By

implication, the other units had not incorporated

these design features. Only two of the units had

eliminated their public address system (485).

White and Kwon found similar diversity in their

survey of a nonrandom sample of 99 special care

units in 34 States (494). Installation of a security

system and creation of a safe outdoor area were the

physical changes reported by the largest proportion

of the survey respondents. These two changes were

also reported to be the most successful of the

environmental changes made in creating the units.

Still, these changes were made by less than half the

units (44 percent and 32 percent, respectively) (493).

Likewise, although 70 percent of the units reported

using personal markers, such as a resident’s picture

near the resident’s room, smaller proportions of the

units (12 to 41 percent, depending on the method)

reported using any of the environmental cueing

methods listed in the survey questionnaire (492).

White and Kwon included in their survey questionnaire a list of 13 environmental features considered by the researchers to be important for the safety

of special care unit residents (494):

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

13.

housekeeping chemicals are secured,

breakable items are kept from residents,

clutter is minimized,

housekeeping carts are secured,

patients smoke only with supervision,

outdoor exits can be opened but have alarms,

patients smoke only in designated areas,

exits have automatic fire unlocks,

stairs and elevators have alarms or are otherwise secured,

wide-angle mirrors or video cameras are used

to monitor residents,

interior exits are disguised,

patients wear sensors that activate an alarm,

and

half doors or clutch doors are used (493).

The proportion of special care units that reported

having these features ranged from 96 percent for

housekeeping chemicals are secured to 18 percent

for half doors or clutch doors are used (493).

For their study of 31 randomly selected special

care units and 32 matched nonspecialized units,

Sloane et al. used a list of 12 environmental features

they considered important in the care of nursing

home residents with dementia:

1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

11.

12.

absence of shiny or slippery floors,

absence of loud, distracting noise,

absence of odors coming from cleaning

solutions,

absence of odors coming from bodily excretions,

absence of glare from the floors,

presence of personal items in residents’

rooms,

presence of home-like furnishings in public

areas,

presence of an outdoor area or courtyard

accessible to residents,

availability of separate rooms or alcoves for

small group and family interactions,

availability of a kitchen for resident use,

absence of routine television use in the main

public area, and

overall adequacy of the lighting level (413).

The study findings show there were no significant

differences between special care units and nonspecialized nursing home units for seven of these

environmental features, but five of the features were

statistically more likely to be found in special care

units than in nonspecialized units (413). These five

features are the amount of personal items seen in

residents’ rooms, the amount of home-like furnishings in public areas, the existence of areas suitable

for small group interaction, the availability of a

kitchen for residents’ use, and the probability of

having a television off in public areas. New special

care units and units originally constructed as special

care units were more likely than other special care

units to incorporate the 12 features.

Some people who are knowledgeable about the

care of nursing home residents with dementia might

question the specific environmental features selected for analysis in these two studies and argue that

other environmental features are more important for

residents’ safety and care. Other people might argue

many of the environmental features on the two lists
94 ● Special Care Units fire- People With Alzheimer’s and Other Dementias

are important for the safety and care of both

demented and nondemented nursing home residents

and thus are not specific for special care units. In

fact, researchers who have conducted descriptive

studies of special care units have commented on the

differences of opinion among special care unit

operators about which environmental features are

important for the safety and care of individuals with

dementia (199,275,332).

It is clear from the preceding discussion that use

of specific physical design and other environmental

features varies in existing special care units. It is also

clear that despite the emphasis on environmental

features in the special care unit literature, even the

most widely used of the features-alarm and locking

systems—are present in only three-quarters of all

units, and many of the environmental features said

to be important in the special care unit literature are

being used in only a small proportion of existing

special care units. According to the researchers who

studied Minnesota nursing homes with a special care

unit in 1986, the nursing homes seemed to have paid

very little attention to environmental or design

considerations for the units (181).

Staff Composition and Training

The literature on specialized nursing home care

for people with dementia emphasizes the need for

staff members who are knowledgeable about dementia and skilled in caring for individuals with dementia. In fact, one of the frequently cited arguments in

favor of establishing special care units is that staff

members with the necessary knowledge and skills

can be more easily assembled and trained on a

special care unit than on a nonspecialized nursing

home unit (263,270,354). In theory at least, staff

members for a special care unit can be selected

specifically to meet the needs of residents with

dementia; formal and informal training can be

focused on these residents’ needs, rather than the

more heterogeneous needs of residents of nonspecialized units; and training about the care of

residents with dementia can be targeted to the

special care unit staff members.

Little information is available about the types of

staff on existing special care units. Some nursing

homes with a special care unit report having added

staff, changed the composition of the staff, and/or

changed staffing patterns when the unit was created.

The 1990 survey of all nursing homes in 5 northeastern States found 69 percent of the facilities with a

special care unit reported providing extra nursing

staff for the unit, and 45 percent reported providing

additional staff of other, unspecified types (194). Of

the facilities with a cluster unit, 40 percent reported

providing extra nursing staff for the unit, and 30

percent reported providing additional staff of other,

unspecified types. Among the Minnesota nursing

homes with a special care unit in 1986, 59 percent

reported the staffing pattern on the unit was different

than the staffing patterns on their nonspecialized

units (18 1), but the differences were not described in

the study report.

Several descriptive studies of nonrandom samples

of special care units have noted the following

staffing changes that have been implemented in one

or more of the units studied:

●

●

●

●

●

●

nurses and aides are not rotated to other units;

aides are assigned fewer patients but have

responsibility for more aspects of their patients’ care;

aides conduct activity programs;

social workers’ and recreation workers’ offices

are located on the unit;

part-time assistants are hired for the evening

shift to feed patients and help out at bedtime;

a ‘‘clinical coordinator’ is designated to develop new programs, educate staff, and market

the units (64,275,332,485).

OTA is not aware of any information about the

proportion of existing special care units that have

implemented any of these staffing changes.

Most—but not all-nursing homes with a special

care unit provide some type of specialized training

for the unit staff. According to the National Medical

Expenditure Survey, 74 percent of nursing homes

that reported having a special care unit in 1987 also

reported providing special training for the unit staff

(248). Nonprofit and public nursing homes and

larger nursing homes were more likely than forprofit nursing homes and smaller nursing homes to

report providing such training. The 1990 survey of

all nursing homes in 5 northeastern States found 70

percent of the facilities with a special care unit and

53 percent of the facilities with a cluster unit

reported providing special training for the unit staff

(194).

Given the emphasis on the need for staff members

who are knowledgeable about dementia and skilled
Chapter 3-Findings From Descriptive Studies • 95

in caring for individuals with dementia, the proportions of nursing homes in these two studies that

reported they do not provide any special training for

the staff of their special care units are surprising.

Data from the National Medical Expenditure Survey—

a survey of a nationally representative sample of

nursing homes—indicate 26 percent of the nursing

homes that reported having a special care unit in

1987 did not provide any special training for the unit

staff (248). Likewise, the 1990 survey of all nursing

homes in 5 northeastern States found that 30 percent

of the nursing homes with a special care unit and 47

percent of the nursing homes with a cluster unit

reported they did not provide special training for the

unit staff (194). These figures are particularly

surprising since they are based on self-report, and it

is unlikely nursing homes would underreport the

provision of training for their staff.

Staff-to-Resident Ratios

As noted earlier, the 1990 survey of all nursing

homes in 5 northeastern States found that 69 percent

of the facilities with a special care unit and 40

percent of the facilities with a cluster unit reported

providing extra nursing staff for the unit (194).

Likewise, 45 percent of the facilities with a special

care unit and 30 percent of the facilities with a

cluster unit reported providing additional staff of

other, unspecified types. Descriptive studies of

nonrandom samples of special care units have also

found that some of the units added staff (275,332);

nevertheless, staff-to-resident ratios varied greatly

from one unit to another.

The University of North Carolina study of 31

randomly selected special care units and 32 matched

nonspecialized units found the special care units

were staffed at a higher level than the nonspecialized

units (291). This difference was statistically significant for nurses, social workers, and activities staff

and approached statistical significance for nurse

aides. After adjusting for the relative severity of

illness of residents of the two types of units, the

researchers concluded that the special care units

provided about one-third more hours of nursing care

per resident than the nonspecialized units (415).

Staff Support Groups

Working with nursing home residents with dementia is often said to be very stressful for the staff

(48,107,167,191,263,346,352). To address the perceived problem of staff stress, some special care

units provide a support group for the unit staff

members. The 1990 survey of all nursing homes in

5 northeastern States found that 44 percent of the

nursing homes with a special care unit and 18

percent of the nursing homes with a cluster unit

reported having such a support group (194). In

contrast, only one of the Minnesota nursing homes

with a special care unit in 1986 reported having a

support group for the unit staff; two additional

facilities reported having stress reduction programs

for the special care unit staff (181).

Activity Programs

One of the frequently cited complaints about the

care provided for individuals with dementia in most

nursing homes is the lack of appropriate activities,

including adequate physical exercise. Descriptive

studies of nonrandom samples of special care units

indicate the units provide a great variety of activity

programs intended to increase stimulation, reduce

idleness and stress, and respond to and maintain

residents’ interests. These programs include singing,

dancing, exercises, painting, crafts, games, parties,

pet therapy, field trips, reality orientation, sensory

and cognitive stimulation, reminiscence therapy,

religious services, housekeeping, cooking, gardening, and sheltered workshop activities (64,275,485,

494). Weiner and Reingold found physical exercise

(including walks, dance exercise, and wheelchair

exercise) and music therapy were the activity

programs provided by the largest proportions of the

special care units they studied (84 percent and 58

percent, respectively); 42 percent of the units they

studied provided reality orientation, and the same

proportion said they provided sensory stimulation.

Other types of activity programs were provided by

smaller proportions of the special care units (485).

The University of North Carolina study of 31

randomly selected special care units and 32 matched

nonspecialized units found virtually no difference in

the proportion of units that reported providing

activity programs for their residents: 90 percent of

the special care units and 91 percent of the nonspecialized units reported providing such programs

(290). Information about the particular types of

activity programs they provided was not collected,

except for reality orientation, which was provided by

all the special care units and 97 percent of the

nonspecialized units, and reminiscence therapy,

which was provided by 90 percent of the special care

units and 87 percent of the nonspecialized units. The
96 ● Special Care Units for People With Alzheimer’s and Other Dementias

1990 survey of all nursing homes in 5 northeastern

States found 79 percent of the special care units and

74 percent of the cluster units reported providing

reality orientation or cognitive stimulation (194).

OTA is not aware of other available data on the

proportion of special care units that provide particular types of activity programs. The 1991 George

Washington University survey included questions

about reality orientation and recreational therapy,

but the survey responses for these questions have not

yet been analyzed (246).

Programs for Families

Another frequently cited complaint about the care

provided for individuals with dementia in most

nursing homes is that the needs of the residents’

families are not met. Descriptive studies of nonrandom samples of special care units indicate many

units have special programs to involve, inform, and

support residents’ families (64,485,494). Weiner

and Reingold found, for example, that 82 percent of

the 22 special care units they studied had a family

support group (485). Figures from these studies

cannot be generalized to all special care units

because they are based on nonmndom samples.

The University of North Carolina study of 31

randomly selected special care units and 32 matched

nonspecialized units found the special care units

were somewhat more likely than the nonspecialized

units to provide special programs for families, but

this difference was not statistically significant (413).

The 1990 survey of all nursing homes in 5 northeastern States found 59 percent of the facilities with a

special care unit and 35 percent of the facilities with

a cluster unit had a support group for residents’

families (194).

Use of Psychotropic Drugs and

Other Medications

As discussed in chapter 2, nursing home residents

with dementia are very likely to receive psychotropic medications, sometimes to control behavioral symptoms which might be more appropriately

managed in other ways. One frequently stated

objective of special care units is to reduce use of

psychotropic medications and substitute other methods for managing residents’ behavioral symptoms.

Descriptive studies indicate special care unit

residents are as likely or more likely than individuals

with dementia in nonspecialized nursing home units

to receive psychotropic medications. Two small

studies that each compared one or two special care

units and two nonspecialized nursing home units

found that a larger proportion of the special care unit

residents than the demented residents in nonspecialized units received psychotropic medications (256,

298). The University of North Carolina study of 31

randomly selected special care units and 32 matched

nonspecialized nursing home units found no significant difference between the 2 types of units in their

use of psychotropic medications (413).

In contrast to the use of psychotropic medications,

the use of medications of all types appears to be

lower in special care units than in nonspecialized

nursing home units. The University of North Carolina study of 31 randomly selected special care units

and 32 matched, nonspecialized nursing home units

found the special care unit residents received significantly fewer medications of all types than residents

with dementia in the nonspecialized units (413).

Likewise, a pilot study that compared 19 residents

with dementia in one special care unit and 20

residents with dementia in nonspecialized units of

the same nursing home found the special care unit

residents were receiving fewer medications of all

types (391).

The lower use of medications of all types on

special care units may reflect differences in the

characteristics of the residents. As discussed later in

this chapter, the findings of several descriptive

studies suggest that residents of special care units

may have fewer medical conditions than other

nursing home residents with dementia (292,382,413);

as a result, they may have less need for medications

of all types. In addition or instead, the lower use of

medications of all types on special care units may

reflect deliberate efforts by physicians who treat

special care unit residents to reduce medication use,

perhaps in recognition of the deleterious effects on

cognition of many types of medications. The available data do not allow one to choose between these

two explanations or other possible explanations.

Use of Physical Restraints

As discussed in chapter 2, nursing home residents

with dementia are often physically restrained, and

reduced use of physical restraints is a frequently

stated objective of special care units. Descriptive

studies show use of physical restraints is much lower

in special care units than in nonspecialized nursing
Chapter 3--Findings From Descriptive Studies ● 97

home units (256,292,391,413). The University of

North Carolina study found that only 16 percent of

the special care unit residents were restrained,

compared with 36 percent of the residents with

dementia on the nonspecialized units (413).

In theory, lower use of physical restraints in

special care units could reflect differences in the

characteristics of the residents; that is, if special care

unit residents exhibit fewer behavioral symptoms

than other nursing home residents with dementia,

special care unit residents may be less likely to be

physically restrained. This explanation is probably

not true, since, as discussed later in this chapter,

special care unit residents generally exhibit as many

or more behavioral symptoms than other nursing

home residents with dementia. A more likely

explanation for the lower use of physical restraints

in special care units is a deliberate effort by unit

operators and staff members to substitute other

methods of managing residents’ behavioral symptoms. Another possible explanation is that special

care unit residents are perceived by staff members as

less physically frail and therefore less likely to fall

than other nursing home residents with dementia,

and as a result, special care unit residents are less

likely to be restrained. Available data do not allow

one to choose between the latter two explanations or

other possible explanations.

Admission and Discharge Policies

and Practices

Some existing special care units have formal

admission and discharge policies, and others do not.

The 1990 survey of all nursing homes in 5 northeastern States found that 43 percent of the facilities with

a special care unit and 19 percent of the facilities

with a cluster unit reported having formal, written

admission criteria for the unit (194). Twenty-eight

percent of the facilities with a special care unit and

20 percent of the facilities with a cluster unit

reported having formal, written discharge criteria

(194). Eight of the 13 special care units in the

nonrandom sample of units studied by Cairl et al.

reported having formal admission policies, and 3 of

the 13 units reported having formal discharge

policies (64).

Regardless of whether they have formal admission and discharge policies, special care units vary

greatly in their admission and discharge practices.

The University of North Carolina study of 31

randomly selected special care units found 40

percent of the units primarily admitted individuals

who had been living in other parts of the nursing

home; the remaining 60 percent primarily admitted

individuals who had been living outside the facility

(413). Weiner and Reingold found that two-thirds of

the 22 nonrandomly selected special care’ units they

studied admitted primarily individuals who had been

living in other parts of the facility (485).

In response to the 1990 study of all nursing homes

in five northeastern States, facilities with a special

care unit reported using several criteria to select unit

residents. The criteria and the proportion of facilities

that reported using them areas follows: 1) the degree

of an individual’s dementia (85 percent); 2) the

individual’s need for supervision (73 percent); 3) the

individual’s behavioral symptoms (79 percent); 4)

the individual’s limitations in activities of daily

living (51 percent); and 5) the individual’s ability to

ambulate independently (38 percent) (194). For

nursing homes with a cluster unit, the corresponding

figures are: 1) the degree of an individual’s dementia

(81 percent); 2) the individual’s need for supervision

(78 percent); 3) the individual’s behavioral symptoms (64 percent); 4) the individual’s limitations in

activities of daily living (57 percent); and 5) the

individual’s ability to ambulate independently (44

percent). Most of the nursing homes reported they

generally seek individuals with more, rather than

less, severe dementia (194). Only 12 percent reported they generally seek individuals with less

severe dementia. Likewise, about 40 percent of the

nursing homes reported they generally seek individuals with more severe behavioral symptoms, and

only 15 to 18 percent reported they generally seek

individuals with less severe behavioral symptoms.

Table 3-3 presents data from the University of

North Carolina study with respect to the proportion

of special care units that encourage or discourage

admission of individuals with eight types of symptoms. Most of the units reported that they encourage

admission of individuals with confusion, wandering,

and agitation (413). Most reported that they discourage admission of individuals who are physically

abusive or unable to walk independently.

Reported admission practices may or may not

reflect actual admission practices in special care

units. Data from the Multi-State Nursing Home Case

Mix and Quality Demonstration, a 5-year congressionally mandated study, suggest the major factor
98 ● Special Care Units for People With Alzheimer’s and Other Dementias

Table 3-3—Proportion of Special Care Units That

Encouraged or Discouraged Admission of Residents

With Certain Problems

Problem

Confusion

Wandering

Agitation

Verbal abusiveness

Physical abusiveness

Urinary incontinence

Unable to walk

Feeding problems

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

encouraged . . . . . . . . . . . . . .

neither . . . . . . . . . . . . . . . . . . .

discouraged . . . . . . . . . . . . .

93%

7

0

87

13

0

53

40

7

27

57

17

7

35

59

30

63

7

10

27

63

17

67

17

SOURCE: P.D. Sloane, L.J. Mathew, J.R. Desai, et al., “Specialized

Dementia Units in Nursing Homes: A Study of Settirigs in Five

States,” University of North Carolina, Chapel Hill, NC, March

1990.

distinguishing special care unit residents and residents with dementia in nonspecialized nursing home

units is the severity of their physical impairments

(382). Among a subsample of 127 residents of 10

special care units and 103 residents with dementia in

10 nonspecialized units in the same nursing homes,

the special care unit residents were significantly less

likely to have severe limitations in activities of daily

living or severe physical impairments. Once other

study variables were controlled, the two groups did

not differ significantly with respect to behavioral

symptoms, including wandering and verbal and

physical abusiveness.

Some special care units admit individuals with the

expectation that the individuals will remain on the

unit until they die, whereas other units admit

individuals with the expectation that they will be

discharged from the unit at some time prior to death.

All but one of the 22 Minnesota nursing homes that

had a special care unit in 1986 reported they

admitted individuals with the expectation that the

individuals would remain on the unit until they died

(181). According to the 1990 study of all nursing

homes in 5 northeastern States, about half the

nursing homes with a special care unit and 60

percent of the nursing homes with a cluster unit

reported they seldom discharge residents of the unit

or cluster prior to their death (194).

Among special care units that do discharge

residents prior to their death, the reasons for

discharge vary. In their study of 99 nonrandomly

selected special care units, White and Kwon found

the two most frequently cited reasons for discharging residents from the units were: 1) that the

residents had become nonresponsive (cited by 70

percent of the survey respondents), and 2) that the

residents were combative, violent, or harmful to self

or others (cited by 63 percent of the units). One-third

of the units reported discharging residents who

became unable to ambulate, and 14 percent reported

discharging residents when the residents’ private

funds were exhausted (492). Weiner and Reingold

cite similar reasons for discharge (485).

The 1990 study of all nursing homes in 5

northeastern States indicate 45 percent of the nursing homes with a special care unit or a cluster unit

reported they discharge residents who need intensive medical care (194). Twenty-one percent reported they discharge residents who need tube

feeding, and a few of the nursing homes (10 percent

or less) reported they discharge residents who have

severe decubitus ulcers, contractures, or recurring

urinary tract infections.

Costs, Charges, and Payment Methods

Very little information is available about the cost

of special care units. The cost obviously varies

among units, depending on the cost of any new

construction, renovation, or other physical changes

to a unit and ongoing operating costs. Respondents

to one survey of a nonrandom sample of 12 special

care units reported new construction and renovation

costs ranging from $4100 to $150,000 (275). Cameron

et al. reported initial costs of only $1300, which

covered the cost of an alarm system, color coding,

and other physical changes made to create a special

care unit (70).

Some special care unit operators and others say

ongoing operating costs are higher for special care

units than for nonspecialized nursing home units.

One-third of the respondents in Weiner and Reingold’s study of a nonrandom sample of 22 special

care units cited higher costs associated with opera-
Chapter 3-Findings From Descriptive Studies . 99

tion of the unit, whereas the other two-thirds did not

(485). Of the 13 special care units in Florida studied

by Cairl et al., 7 reported higher operating costs for

the special care unit than for nonspecialized units in

the same facility; 5 reported no difference in

operating costs, and 1 reported lower operating costs

(64). Two studies of individual special care units

found no difference in operating costs between the

special care units they studied and nonspecialized

units in the same facilities (70,265).

The Multi-State Nursing Home Case Mix and

Quality Demonstration, a 5-year congressionally

mandated study that included 20 special care units,

found that on average the amount of staff time spent

caring for residents with dementia was greater in the

special care units than in the nonspecialized units in

the study sample (143). As noted earlier, the

University of North Carolina study of 31 randomly

selected special care units and 32 nonspecialized

nursing home units in 5 States had similar findings

(413). The greater amount of staff time spent caring

for special care unit residents translates into higher

average operating costs in the special care units.

Citing higher operating costs, some nursing homes

charge more for care in their special care unit than in

their nonspecialized units. To OTA’s knowledge, no

public program currently pays more for care of an

individual in a special care unit than in a nonspecialized nursing home unit. Thus, it is only private-pay

residents who may be charged more for care in a

special care unit than they would be charged in a

nonspecialized unit in the same facility.

Compared with nonspecialized units, special care

units generally have a higher proportion of privatepay residents (292,413,477). The University of

North Carolina study of 31 randomly selected

special care units and 32 matched nonspecialized

units found, for example, that 60 percent of the

special care unit residents were private-pay, compared with 30 percent of the residents of the

nonspecialized units (413). Six of the 31 special care

units did not accept Medicaid payment at all.

The University of North Carolina study found that

79 percent of the special care units in the study

sample charged private-pay residents more for care

in the special care unit than the residents would have

been charged in a nonspecialized unit in the same

facility (415). The excess charge varied from one

unit to another and from State to State. The mean

excess charge ranged from $3.17 a day in intermediate care facilities (ICFs) in Ohio to $19.75 a day in

skilled nursing facilities (SNFs) in California.

Preliminary data from the 1991 George Washington University survey of all special care units

nationwide indicate about half of the units charged

private-pay residents more in the special care unit

than the residents would have been charged in a

nonspecialized unit in the same facility (246). The

excess charge averaged $9.24 a day and ranged from

$1 to $83 a day.

Lastly, a small pilot study that compared monthly

charges for care in two nursing home special care

units and two nonspecialized nursing home units in

California found the special care units charged their

residents an average of $3196 per month, whereas

the nonspecialized units charged their residents an

average of $2803 per month (256).

DESCRIPTIVE TOPOLOGIES OF

SPECIAL CARE UNITS

Several topologies of special care units have been

developed based on information from descriptive

studies. Three topologies based on information

about unit goals were discussed earlier in this

chapter. OTA is aware of three other descriptive

topologies based on information about a variety of

unit characteristics. One of the topologies is based

on information about 13 of the 31 VA special care

units identified by the 1989 VA survey discussed

earlier in this chapter. This typology reflects differences among the units in their goals and the typical

length of stay in the unit (103). On the basis of these

differences, three types of units were identified. One

type of unit has a relatively short length of stay and

focuses primarily on diagnosis, short-term behavioral stabilization, and discharge placement. A

second type of unit has an intermediate length of stay

and focuses on behavioral management and discharge placement. The third type of unit has a more

extended length of stay and focuses primarily on

long-term supportive care.

A second typology is based on information about

a nonrandom sample of 13 special care units in a

10-county area of west central Florida (64). This

typology reflects differences among the units in 13

characteristics: their origin and philosophy, motives

for development, level of commitment, target population, policies and procedures, admission and

discharge criteria, assessment and followup, physi-
100 ● Special Care Units for People With Alzheimer’s and Other Dementias

Table 3-4-Ratings on Some Variables for Eight Types of Special Care Units

Staff with

specialized Staff Administrative

Cleanliness of training Staff/patient Staff attitudes stress Administrative attitudes

Type public areas Odors in dementia interaction toward patients level philosophy toward patients

Ideal . . . . . . . . . . . . . . . . High No Yes High Caring Low Therapeutic Caring

Uncultivated . . . . . . . . . High No Yes High Caring High Maintenance Apathetic

Heart of gold . . . . . . . . . Low No Yes High Caring High Therapeutic Caring

Rotten at the core . . . . High No No Low Apathetic Low Maintenance Apathetic

Institutional . . . . . . . . . . High Yes No High Caring Low Maintenance Caring

Limited . . . . . . . . . . . . . . Low Yes No Low Apathetic Low Therapeutic Caring

Conventional . . . . . . . . Low Yes No Low Caring High Maintenanca Apathetic

Execrable . . . . . . . . . . . Low Yes No Low Apathetic Low Maintenance Apathetic

SOURCE: D.T. Gold, P.D. Sloane, L.J. Mathew, et al., “Special Care Units: A Typology of Care Settings for Memory-lmpaired Older Adults,” Gerontologist -.

31(4):470, 1991,

cal environment, activity programs, staffing patterns, staff training, family involvement, and efforts

to evaluate the impact of the unit. Based on

differences among the units in these 13 characteristics, the researchers identified three types of units

that, in their view, reflect the extent to which the

units were tailored for individuals with dementia:

“highly specific” units, “moderately specific”

units, and ‘‘minimally specific’ units.

A third descriptive typology is based on the

findings of the University of North Carolina study of

31 randomly selected special care units and 32

matched nonspecialized nursing home units in 5

States. This typology was derived from an analysis

of narrative accounts dictated by an investigator who

visited each of the units (154). These narrative

accounts were available for 28 of the 31 special care

units and 27 of the 32 nonspecialized units. The unit

characteristics used in the development of the

typology include: appearance of the units’ public

area, general maintenance, cleanliness, unit layout,

presence of an activity room, decoration of the

public areas (institutional or home-like), noise level,

odor, ambiance (depressing or cheerful), size of the

facility for the population (crowded or uncrowded),

resident living arrangements (shared or private),

resident appearance (ill-groomed or well-groomed),

resident location during the day (in their rooms or in

the public areas), resident activity level, resident

wandering, use of physical restraints, use of psychotropic medications, presence of an activity director, staff relations with the administration, staff

stress level, staff training in dementia, staff attitude

toward residents (apathetic or caring), staff/resident

interaction (high or low), administrative philosophy

(maintenance or therapeutic), admission criteria (lax

or strict), the administration’s attitude toward the

residents (apathetic or caring), and involvement of

the administration in resident care. Based on differences among the units in these characteristics, the

researchers identified eight types of units: “ideal,

uncultivated, heart of gold, rotten at the core,

institutional, limited, conventional, and execrable. ’

Table 3-4 shows the ratings of each of the types for

eight of the characteristics.

The typology based on information from the

University of North Carolina study reflects the

characteristics of the special care units and the

nonspecialized units in the study sample (154). The

researchers found a larger proportion of the special

care units in the study sample were in the positive

types: 43 percent of the special care units were in the

‘‘ideal” type; 11 percent were in the ‘uncultivated”

type, and 4 percent were in the “heart of gold” type.

In contrast, none of the nonspecialized units were in

the ‘ideal’ or ‘uncultivated’ types, and 15 percent

were in the ‘heart of gold’ type. None of the special

care units were in two of the negative types,

“conventional” and “execrable,” and only 7 percent of the special care units were in the ‘‘rotten at

the core” type. Of the nonspecialized units, 7

percent were in the “conventional” type; 11 percent

were in the “execrable” type, and 15 percent were

in the ‘rotten at the core’ type. Thus the special care

units seem, in general, to be providing better care

than the nonspecialized units for their residents with

dementia.

As noted earlier, topologies are useful in thinking

about differences among special care units, although

it is unclear whether topologies based on nonrandom

samples, such as the typology based on information

about the 13 special care units in Florida, encompass

the full variation among existing special care units.

The typology based on information from the University of North Carolina study does not suffer from this

potential drawback because that study included a
Chapter 3-Findings From Descriptive Studies ● 101

random sample of special care units. On the other

hand, the latter typology is based on an analysis of

nonquantitative observations by three individuals,

one of whom visited each of the units once. The

validity of these individuals’ observations cannot be

determined. The process by which their observations

were combined to create the typology also raises

methodological questions.

Both topologies imply that certain types of special

care units are more appropriate than other types of

special care units for nursing home residents with

dementia. Some of the unit characteristics on which

the topologies are based are not specific for individuals with dementia, however. With respect to the

‘‘execrable’ units, for example, the researchers say:

The administrators of execrable units are apathetic, have weak authority over staff, and are

unresponsive either to patient complaints or staff

difficulties. Their lax admissions criteria result in the

units being filled with patients who are inappropriate

for an intermediate care facility. Rather than screen

out behavior problems or serious physical comorbidity, directors of execrable units encourage recruitment of any potential patient. Each bed occupied

means reimbursement (154).

Clearly, the care provided by these “execrable”

units would be inappropriate for nondemented as

well as demented nursing home residents.

Although it is obvious poor-quality care is not

appropriate for any nursing home resident, there is

very little evidence that any specific characteristic of

nursing home units is associated with better resident

outcomes. The available studies with respect to this

issue are discussed in chapter 4. Without some

evidence of improved outcomes, it cannot be said

with certainty that any particular type of nursing

home unit is more appropriate for individuals with

dementia, except in the sense that units that provide

poor-quality care which would be inappropriate for

any resident are, by definition, providing inappropriate care for residents with dementia.

CHARACTERISTICS OF SPECIAL

CARE UNIT RESIDENTS

Many reports on individual special care units

describe residents of a particular unit, but little

research-based information is available about characteristics of special care unit residents or about the

ways, if any, in which these residents differ from

other nursing home residents. A few descriptive

studies provide information about residents of the

special care units they studied, and five studies

compare the characteristics of special care unit

residents and residents with dementia in nonspecialized nursing home units (see table 3-lc). The

University of North Carolina study of 31 randomly

selected special care units and 32 matched nonspecialized units compared some characteristics of

special care unit residents with the characteristics of

nursing home residents in general (413). Several of

the evaluative studies discussed in chapter 4 also

provide comparative information about the baseline

characteristics of their subjects (special care unit

residents and residents with dementia in the nonspecialized nursing home units). This section summarizes the findings of all of these studies.

Descriptive studies show that on average special

care unit residents are younger than other demented

and nondemented nursing home residents (256,292,

391,413). Special care units residents are also more

likely than other demented and nondemented nursing home residents to be white and male (256,292,

413,492).

Special care units admit individuals with a variety

of dementia-related diagnoses, the most common

being Alzheimer’s disease (275,292,391,413). Residents of special care units are much more likely than

residents with dementia in nonspecialized units to

have a specific diagnosis, such as Alzheimer’s

disease, rather than a more general diagnosis, such

as senility or organic brain syndrome (99,292,391,

413). Not all special care unit residents have a

dementia diagnosis, however. Some special care

units admit individuals who have behavioral symptoms but no diagnosis of a dementing illness (64).

The University of North Carolina study of 31

randomly selected special care units and 32 matched

nonspecialized nursing home units found that on

average the special care unit residents were more

severely cognitively impaired than residents of the

nonspecialized units, even though all the individuals

in the study sample had a dementia diagnosis (413).

This difference in the average severity of residents’

cognitive impairment was due to the presence on the

nonspecialized units of some residents with little or

no cognitive impairment despite their dementia

diagnosis. Two evaluative studies discussed in

chapter 4 also found the special care unit residents in

their study samples were significantly more cognitively impaired than residents with dementia in the
102 ● Special Care Units for People With Alzheimer’s and Other Dementias

Table 3-5—lmpairments in Activities of Daily Living Among Special Care Unit

Residents, Residents With Dementia in Nonspecialized Nursing Home Units,

and All Nursing Home Residents

Residents with

Special care dementia in nonspecialized All nursing home

Functional impairment unit residents nursing home units residents

Needs help with dressing . . . . . . . . . . . 81%. 93% 89%

Needs help with getting out of bed . . 45 78 71

Needs help with ambulating . . . . . . . . 30 60 54

Incontinent . . . . . . . . . . . . . . . . . . . . . . . . 69 84 71

SOURCE: P.D. Sloane, L.J. Mathew, M. Scarborough, et al., “Physical and Pharmacologic Restraint of Nursing Home

Patients With Dementia: Impact of Specialized Units,” Journa/ of the American Medical Association

265(10):1260, 1991.

nonspecialized units studied (99,195). On the other

hand, two descriptive studies with small samples

found no significant difference in the severity of

cognitive impairment between individuals with

dementia on special care units and on nonspecialized

units (256,292).

With respect to coexisting medical conditions, the

University of North Carolina study found the special

care unit residents were less likely than residents of

the nonspecialized nursing home units to have a

history of stroke, hip fracture, or other fractures

(413). The special care unit residents were significantly more likely to be ambulatory and to be taking

fewer medications of all types, thus suggesting they

may have fewer medical conditions than the residents with dementia on the nonspecialized units. An

earlier study that compared one special care unit

with two nonspecialized nursing home units found

the special care unit residents had significantly

fewer medical diagnoses than the residents of the

nonspecialized units (292). Data from the MultiState Nursing Home Case Mix and Quality Demonstration show that the residents of 10 special care

units in the study sample were significantly less

likely than the residents with dementia in nonspecialized units in the same nursing homes to have a

diagnosis of stroke or diabetes (382). The special

care unit residents were somewhat less likely to have

a diagnosis of congestive heart failure or chronic

obstructive pulmonary disease, but these differences

were not statistically significant, and the difference

with respect to diabetes was no longer significant

when other study variables were controlled. Two

other studies found no difference in the presence of

specific medical conditions, the average number of

medical conditions per resident, or the average

number of medications per resident (99,391).

Several studies indicate special care unit residents

are less likely than other nursing home residents

with dementia to have impairments in activities of

daily living (99,256,413). Table 3-5 shows the

findings of the University of North Carolina study

with respect to the proportion of special care unit

residents and individuals with dementia in nonspecialized units who were impaired in dressing, getting

out of bed, and continence. These differences were

statistically significant. In contrast, two studies with

small samples found no significant difference in

impairments in activities of daily living between

special care unit residents and residents with dementia in nonspecialized nursing home units (292,391).

Data from the Multi-State Nursing Home Case Mix

and Quality Demonstration show the residents of 10

special care units in the study sample were significantly more likely than the residents with dementia

in nonspecialized units in the same nursing homes to

have impairments on an index of two activities of

daily living described by the researchers as “early

loss’ activities (grooming and dressing). In contrast,

the special care unit residents were significantly less

likely to have impairments on an index of four other

activities of daily living described by the researchers

as “late loss” activities (eating, using the toilet,

transferring, and bed mobility) (382).

Special care unit residents may be more likely to

exhibit behavioral symptoms than individuals with

dementia in nonspecialized nursing home units

(256,413). The University of North Carolina study

found a trend for a greater prevalence of behavioral

symptoms among special care unit residents, but the

differences were not statistically significant (413).

An earlier study found no difference in the prevalence of behavioral symptoms among the residents

of one special care unit and two nonspecialized

nursing home units (292). Data from the Multi-State

Nursing Home Case Mix and Quality Demonstration show that the residents of 10 special care units

in the study sample were significantly more likely
Chapter 3--Findings From Descriptive Studies . 103

than the residents of nonspecialized units in the same

nursing homes to wander and to be verbally and

physically abusive (382). These differences were no

longer significant, however, when other study variables were controlled. Interestingly, the study data

show that the greater likelihood of wandering on the

special care unit was due to the greater proportion of

residents in the special care units who were physically capable of wandering.

The University of North Carolina study found the

special care unit residents were more likely than the

individuals with dementia in nonspecialized nursing

home units to be out of their rooms and to be

participating in activity programs (413). Three

studies with small sample sizes also found special

care unit residents were more likely than residents of

nonspecialized units to participate in activity programs (256,292,391).

Lastly, one study that compared 13 residents of

one special care unit and 34 individuals with

dementia in 2 nonspecialized nursing home units

found the special care unit residents were more

likely to fall (292). This difference was not statistically significant. Several studies discussed in chapter 4 also found a higher incidence of falls among

special care unit residents than other nursing home

residents (99,265,497,521). One of these studies

found special care units residents were more likely

than the residents of nonspecialized units to be

hospitalized for a hip fracture (99).

Since the studies discussed in this chapter are

cross-sectional, it is unclear whether some of the

findings reflect pre-existing characteristics of the

residents and the admission and discharge criteria of

the units, or on the other hand, the effect of the unit

on residents. With respect to participation in activities, for example it is unclear whether special care

units admit individuals who are more likely to

participate in activities or whether one effect of the

units is to cause greater resident participation in

activities.

CONCLUSION

The preceding review of findings from the available descriptive studies of special care units allows

some conclusions to be drawn about the number and

characteristics of nursing homes with a special care

unit, the characteristics of the special care units, and

the characteristics of their residents. Table 3-6 lists

OTA’s conclusions in these four areas. Each conclusion is supported by the findings of at least one study

that used a representative sample of nursing homes

or surveyed all nursing homes in a given geographic

area. None of the conclusions is contradicted by the

findings of any descriptive study OTA is aware of,

including studies with small, nonrandom samples.

The diversity of existing special care units is a

common finding in all special care unit research.

Because of this diversity, no single descriptive

statement is true of all special care units for

individuals with dementia, including the statement

that they only serve individuals with dementia. With

respect to existing units’ philosophies and goals,

staffing patterns, physical design features, and

activity programs, diversity is probably the primary

finding from the available studies.

As noted earlier, one of the difficulties in special

care unit research is the lack of an accepted

definition of the term special care unit. Thus far,

most descriptive studies of special care units have

used self-report—i.e., the statement of a special care

unit operator or another nursing home staff member—

to determine which nursing home units are special

care units. The University of North Carolina study

added several additional conditions. For that study,

a special care unit was defined as follows:

a distinct functional area of a nursing home, or the

entire home, which identified itself as a dementia

unit, served primarily dementia residents, and satisfied at least three of the following conditions: 1)

separation from the remainder of the facility by

closed doors; 2) over 50 percent of the staff having

at least a year’s experience with geriatric residents;

3) specific staff training in dementia care; and 4) unit

activities being designed with the dementia resident

in mind (413).

By defining the term special care unit in a

particular way, researchers necessarily focus on a

subset of all facilities that might be considered or

might self-identify as special care units. By doing so,

they eliminate some of the diversity that characterizes the full universe of existing special care units.

If, for example, the term special care unit is defined

for a particular study as a physically separate part of

the nursing home that has certain physical design

features, such as a safe area for wandering, then all

special care units in the study sample will, by

definition, have a safe area for wandering. As

discussed in chapter 4, it is unclear what particular

physical design features, if any, are related to
104 ● Special Care Units for People With Alzheimer’s and Other Dementias

Table 3-6-Conclusions From Descriptive Studies of Special Care Units

Number of Nursing Homes That Have a Special Care Unit

• OTA estimates that in 1991, 10 percent of all nursing homes in the United States had a special care unit. In

at least some States, this figure includes nursing homes that place some of their residents with dementia in

“clusters” in units that also serve nondemented residents.

. The proportion of nursing homes that have a special care unit varies in different parts of the country and in

different States.

. Many nursing homes that do not have a special care unit are planning to establish one, and some nursing

homes that have a special care unit are planning to expand the unit.

Characteristics of Nursing Homes That Have a Special Care Unit

● Larger nursing homes ❁❒❅ more likely than Smaller nursing homes to have a special care unit.

● As of late 1987, most nursing homes that had a special care unit were private, for-profit facilities. At that

time, multi-facility nursing home corporations owned about one-third of all the facilities that had a special

care unit. There is no evidence, however, that ownership of special care units is dominated by a small number

of multi-facility nursing home corporations.

Characteristics of Special Care Units

. Special care units are extremely diverse.

• Most special care units have been established since 1983, although a few have been in operation for 20 to

25 years.

● The goals of special care units differ. For some units, the primary goal is to maintain residents’ ability to

perform activities of daily living. Other units focus on maintaining residents’ quality of life, eliminating

behavioral symptoms, or meeting residents’ physical needs.

Ž Most existing special care units were not originally constructed as special care units, and at least one-fifth

were neither originally constructed nor remodeled for this purpose.

• The use of specific physical design and other environmental features varies in existing special care units.

Many of the physical design and other environmental features cited as important in the special care unit

literature are used in only a small proportion of special care units.

• The most extensively used environmental feature in special care units is an alarm or locking system, found

in more than three-fourths of existing units.

● On average, special care units probably have fewer residents than nonspecialized nursing home units.

• On average, special care units probably have more staff per resident than nonspecialized nursing home units.

• Although the majority of existing special care units provide special training for the unit staff, at least

one-fourth of existing units do not.

(Continued on next page)

positive outcomes for nursing home residents with residents with dementia in clusters in units that also

dementia. Given that uncertainty, it is probably served nondemented residents (194). The study

premature to exclude for research purposes special found that a significant proportion of these cluster

care units that do not have a particular physical

design or other feature.

units incorporated features said to be important in

special care units, although the cluster units were

In this context, it is important to note one of the less likely than the special care units in the study

findings of the 1990 study of all nursing homes in States to incorporate the features. It will be imporfive northeastern States, i.e., that 5 percent of the tant to determine in future special care unit studies

nursing homes reported that although they did not whether cluster units are more like special care units

have a special care unit, they did place some than they are like nonspecialized nursing home units
Chapter 3-Findings From Descriptive Studies ● 105

Table 3-6-Conclusions From Descriptive Studies of Special Care Units-(Continued)

• Less than half of existing special care units provide a support group for unit staff members.

● The types of activity programs provided by special care units vary greatly, but existing special care

units are probably no more likely than nonspecialized units to provide activity programs for their

residents.

• About half of existing special care units provide a support group for residents’ families.

● Special care unit residents are as likely or more likely than other nursing home residents with dementia

to receive psychotropic medications.

• Special care unit residents are probably less likely than other nursing home residents with dementia

in nonspecialized nursing home units to receive medications of all types.

* Special care unit residents are less likely than other nursing home residents with dementia to be

physically restrained.

● Special care units vary greatly in their admission and discharge policies and practices. About half of

all special care units admit residents with the intention that the residents will remain on the unit until

they die.

* The cost of special care units varies depending on the cost of new construction or remodeling, if any,

and ongoing operating costs. On average, existing special care units probably cost more to operate than

onnspecialized nursing home units, primarily because of the higher average staffing levels on special

care units.

* Special care units generally have a higher proportion of private-pay residents than nonspecialized

nursing home units, and the private-pay residents are often charged more for their care in the special

care unit than they would be in a nonspecialized unit.

Characteristics of Special Care Unit Residents

* Special care unit residents are younger than other nursing home residents, and they are more likely

than other nursing home residents to be male and white.

• Special care unit residents are more likely than other nursing home residents to have a specific

diagnosis for their dementing illness.

* Special care unit residents are probably somewhat more cognitively impaired and somewhat less

physically and functionally impaired than other nursing home residents with dementia

• Special care unit residents are probably somewhat more likely than other nursing home residents with

dementia to participate in activity programs.

• Special care unit residents are mom likely than other nursing home residents with dementia to fall.

SOURCE: (X&e of TkdInology Assessment, 1992.

and to compare the outcomes for residents with 2. special care units probably have more staff per

dementia of the three types of units.

Four of the conclusions listed in table 3-6 would

be regarded by many people as indicators that in

general special care units are providing more appropriate care than nonspecialized units for individuals

with dementia. These conclusions are that on

average:

1. special care units probably have fewer residents than nonspecialized nursing home units;

resident than nonspecialized nursing home

units;

3. special care unit residents are less likely than

individuals with dementia in nonspecialized

nursing home units to be physically restrained;

and

4. special care unit residents are probably more

likely than other nursing home residents with

dementia to participate in activity programs.
106 ● Special Care Units for People With Alzheimer’s and Other Dementias

In contrast, the finding that special care unit

residents are as likely or more likely than other

nursing home residents with dementia to receive

psychotropic medications would be regarded by

many people as an indicator that special care units

are not providing more appropriate care for individuals with dementia. The issue of criteria for evaluating the quality of special care units is discussed in

chapter 1. One question with respect to that issue is

whether criteria such as number of residents, staff-toresident ratios, and use of physical restraints and

psychotropic medications are valid criteria for evaluating quality in themselves or whether their validity

remains to be demonstrated in terms of their

relationship to other resident outcomes.

Lastly, despite these tentative conclusions and

observations, the overriding conclusion to be drawn

from this review of findings from the available

descriptive studies is the need for more research that

builds on, clarifies, and expands upon current

findings. As noted throughout the preceding discussion, many of the available studies have used very

small samples and nonrandom samples. Moreover,

since the studies did not use common definitions for

the unit and resident characteristics they observed,

their findings are not necessarily comparable. These

problems are minimized in several sources of

forthcoming descriptive information about special

care units and special care unit residents which are

described in the next section.

FORTHCOMING DESCRIPTIVE

INFORMATION ABOUT SPECIAL

CARE UNITS AND SPECIAL

CARE UNIT RESIDENTS

OTA is aware of several sources of descriptive

information about special care units and special care

unit residents that will be available in the near future.

As noted in the beginning of this chapter, researchers

at George Washington University are currently

analyzing responses to a questionnaire and telephone interviews with more than 14,000 nursing

homes (247). The questionnaire asked for respondents’ opinions about the minimum characteristics a nursing home unit should have to be designated as a special care unit. The questionnaire also

asked about each of the topics discussed in the

preceding sections, including the size and ownership

of the nursing home, the size of the special care unit,

its physical characteristics, philosophy of care,

admission and discharge criteria, staff selection

criteria, staff training, staff-to-resident ratio, staff

support groups, activity programs, programs for

residents’ families, use of physical and pharmacological restraints, and reimbursement. Once analyzed, the results of this study will provide valuable

information that is not currently available about all

of these topics.

Another source of forthcoming information about

special care units and special care unit residents is

data currently being collected by all nursing homes

as a result of the implementation in 1990 of

mandatory assessment of nursing home residents in

accordance with the nursing home reform provisions

of the Omnibus Budget Reconciliation Act of 1987

(OBRA-87). As discussed in chapter 1, all nursing

homes are now required to assess each of their

residents at the time of the resident’s admission to

the nursing home and annually thereafter using the

Minimum Data Set or a State-designated assessment

instrument that includes the same core items. The

Minimum Data Set contains questions about each of

the resident characteristics discussed in this chapter.

Although there will undoubtedly be variation in the

way these questions are answered by different

nursing home staff members, in different facilities,

and in different States, use of the same or similar

assessment instruments should increase the availability of comparable information about all nursing

home residents, including residents of special care

units. Since all nursing home residents must be

reassessed annually using the Minimum Data Set,

longitudinal data on individual special care unit

residents will also become available. Variation in

the way the information is collected from one staff

member to another and one nursing home to another

may, however, compromise its value for research

purposes (437).

An early version of the Minimum Data Set has

already been used to collect information on about

300 residents of 20 special care units in six States as

part of the Multi-State Nursing Home Case Mix and

Quality Demonstration-a 5-year study mandated

by Congress as part of OBRA-87. The special care

units included in the demonstration were designated

by the Health Care Financing Administration based

on recommendations from the Alzheimer’s Association and State officials in the four States in which the

demonstration is being conducted (Kansas, Maine,

Mississippi, and South Dakota) and in two additional States that are participating in some aspects of
Chapter 3--Findings From Descriptive Studies ● 107

the demonstration (Nebraska and Texas) (137).

Information on residents of these special care units

was collected in 1990. Data comparing 127 residents

of 10 of the special care units and 103 residents with

dementia in nonspecialized units in the same nursing

homes were reported earlier in this chapter (382).

Other findings from the demonstration have not yet

been published. Individuals familiar with the demonstration’s findings say they show lower use of

physical restraints, the same or higher use of

psychotropic medications, and a higher incidence of

falls in the special care units than in the nonspecialized nursing home units included in the demonstration (15,521). As discussed in chapter 1, the

demonstration data also show greater resource use

for equally impaired residents with dementia in the

special care units than in the nonspecialized units

(143).

Because of the current lack of agreed upon criteria

for evaluating special care units, there is no way to

determine the quality of the care provided by the

special care units included in the Multi-State Nursing Home Case Mix and Quality Demonstration.

Nor is it possible to determine at this point whether

these units are typical of special care units nationally

and whether the residents of the units are typical of

special care unit residents nationally. Nevertheless,

the findings provide valuable information about a

relatively large number of special care unit residents

and comparable information about residents with

dementia in nonspecialized nursing home units.
Chapter 4

Special Care Units For

People With Dementia:

Findings From Evaluative Studies
Contents

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . 111

TYPES OF EVALUATIVE STUDIES OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . 112

EVALUATIVE STUDIES WITHOUT A CONTROL GROUP:

EFFECTS ON RESIDENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112

EVALUATIVE STUDIES WITH A CONTROL GROUP:

EFFECTS ON RESIDENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117

STUDIES OF PARTICULAR FEATURES AND INTERVENTIONS IN

SPECIAL CARE UNITS: EFFECTS ON RESIDENTS . . . . . . . . . . . . . . . . . . . . . . . . . . . 121

STUDIES THAT EVALUATE THE EFFECTS OF SPECIAL CARE UNITS

ON UNIT STAFF MEMBERS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123

STUDIES THAT EVALUATE THE EFFECTS OF SPECIAL CARE UNITS

ON RESIDENTS’ FAMILIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . 125

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127

Tables

Table Page

4-1. Evaluative Studies Without a Control Group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113

4-2. Evaluative Studies With a Control Group . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 118

4-3. OTA’S Conclusions From the Evaluative Studies of Special Care Units . . . . . . . . . . 128
Chapter 4

Special Care Units For People With Dementia:

Findings From Evaluative Studies

INTRODUCTION

As noted in chapter 3, much of the literature on

special care units consists of descriptive reports

about an individual unit. These descriptive reports

often present anecdotal evidence of the unit’s

positive outcomes. Frequently, the reports include

case examples that show how the unit benefited one

or more of its residents. Many of the reports also

describe positive outcomes of the unit for residents’

families and unit staff members.

Anecdotal evidence of the positive outcomes of

individual special care units is compelling. The case

examples are particularly compelling: the individual

residents they describe seem typical of nursing home

residents with dementia who do not do well in

nonspecialized units; these individuals often are

admitted to the special care unit in a very agitated or

withdrawn condition; they frequently have been

overmedicated and physically restrained; characteristics of the unit, including its physical design

features, patient care philosophy, and activity programs, seem to match their needs exactly; and they

respond positively and dramatically to the unit

environment.

Case examples and other anecdotal evidence of

the positive outcomes of individual units are not

adequate, however, to evaluate the effectiveness of

special care units. In the past few years, a number of

evaluative studies of special care units have been

conducted. These studies attempt to measure objectively the effectiveness of one or more special care

units in terms of changes in aspects of their

residents’ condition and functioning over time.

Several of the evaluative studies also measure the

effects of special care units on residents’ families

and unit staff members.

This chapter reviews what is known about special

care units from the available evaluative studies. It

does not include information from descriptive reports on individual special care units. Findings of the

available evaluative studies are discussed in some

detail because, like the descriptive studies discussed

in chapter 3, they provide a basis for informed policy

decisions about the development of special regulations and reimbursement for special care units, about

the need for and content of consumer education

about special care units, and about the future

direction and level of government support for

research on special care units.

OTA’s conclusions from the evaluative studies

discussed in this chapter are summarized in table 4-3

at the end of the chapter. The findings differ,

depending on whether the study used a control

group. The nine evaluative studies that did not use a

control group found positive outcomes for special

care unit residents in a variety of areas. If contradictory findings are excluded, the only positive outcomes found in more than one of the nine studies are

decreased nighttime wakefulness, improved hygiene, and weight gain. A few of the studies found

improvements over time in the important areas of

residents’ ability to perform activities of daily living

and residents’ behavioral symptoms, but an equal

number of studies did not find such improvements.

Only two of the six evaluative studies that used a

control group found any positive outcomes for

special care unit residents. One of these studies

found that over a l-year period, 14 residents of one

special care unit showed significantly less decline

than 14 residents with dementia in nonspecialized

units of the same nursing home in their ability to

perform activities of daily living (392). The second

study found that 13 residents of one special care unit

exhibited significantly fewer catastrophic reactions

than 9 residents with dementia in nonspecialized

units of the same facility (265). The 13 special care

unit residents also interacted significantly more

often with staff members.

Only one of the four evaluative studies that

measured the impact of a special care unit on unit

staff members found any positive outcomes. The

findings with respect to outcomes for residents’

families are contradictory, as described later in the

chapter.

The limited positive findings in many of these

evaluative studies and the complete lack of positive

findings in some of the studies are surprising and

appear to contradict the conviction of special care

–111–
112 . Special Care Units for People With Alzheimer’s and Other Dementias

unit operators and others that the units benefit

residents, residents’ families, and unit staff members. Each of the available studies suffers from one

or more methodological problems that could invalidate its findings, e.g., small sample sizes and use of

nonrandom samples. Citing these problems, some

special care unit advocates discount the lack of

positive findings. In contrast, OTA concludes that

some of the studies-particularly the six studies that

used a control group-constitute credible research

in an area in which good research is difficult to

design and conduct. Despite methodological problems, the studies’ findings are meaningful and

deserve careful consideration by policymakers, special care unit advocates, and others.

TYPES OF EVALUATIVE STUDIES

OF SPECIAL CARE UNITS

Three types of evaluative studies of special care

units have been conducted. In one type, selected

characteristics of individuals with dementia, their

families, and/or unit staff members are measured at

designated intervals before and after the individuals’

admission to a special care unit. Changes or lack of

changes in the measured characteristics over time

are then attributed to the impact of the special care

unit. This type of study does not use a separate

control group.

The second type of evaluative study does use a

separate control group. In this type of study, selected

characteristics of the special care unit residents, their

families, and/or unit staff members and selected

characteristics of other individuals with dementia,

their families, and/or staff members in nonspecialized nursing home units or other settings are

measured at designated intervals. Changes or lack of

changes in the measured characteristics of the two

groups of subjects are compared, and any differences

between the two groups are attributed to the impact

of the special care unit.

A third type of evaluative study measures the

effectiveness of particular features and interventions

in special care units. One example is research on the

effectiveness of various types of devices to deter

residents who wander from leaving the unit.

The findings of these three types of evaluative

studies are discussed in the following sections.

Findings with respect to the effects of special care

units on residents, residents’ families, and unit staff

members are discussed separately.

EVALUATIVE STUDIES

WITHOUT A CONTROL GROUP:

EFFECTS ON RESIDENTS

OTA is aware of nine evaluative studies of special

care units in which a control group was not used (see

table 4-l). Seven of the nine studies were conducted

in a single special care unit. The other two studies

were conducted in two and three special care units,

respectively. The samples for 6 of the 9 studies were

very small (under 12 individuals each). One of the 3

remaining studies had a sample of 32 subjects, and

one had a sample of 53 subjects (24,245). The

sample size for the ninth study is not specified in the

study report (22).

Table 4-1 lists the physical design and other

changes made to create the special care units, as

described in the study reports. These changes

differed from one special care unit to another. Some

changes that were made to create one or more of the

units may not have been mentioned in the study

reports.

Each of the nine studies found some positive

outcomes of the special care units, as summarized

below. The study reports emphasize these positive

outcomes. Negative outcomes are also reported, but

they receive less emphasis in the study reports. The

statistical significance of the studies’ findings was

computed in only four of the nine studies. In the

following discussion, OTA uses the terms statistically significant and significant for research findings

with a P value of 0.05 or less.

Bell and Smith found statistically significant

improvements in behavior among residents of a

newly created 24-bed special care unit (22). Over a

3-month period, the residents became significantly

more likely to exhibit three behaviors defined as

“positive’ by the researchers-having a clean face,

having clean clothes, and walking alone. At the end

of the 3-month period, the frequency of these

behaviors among residents of the newly created unit

was similar to their frequency among residents of a

26-bed special care unit that had been operating for

over a year. This outcome fit the researchers’

hypothesis that behaviors they defined as positive

would increase over time in the new unit and

behaviors they defined as negative would decrease
Table 4-l—Evaluative Studies Without a Control Group

Year of Funding Duration of

Citation the Study Source Subjects study Changes Made to Create the Special Care Unit

Bell and Smith,

unpublished

manuscript

1986 no funding source

reported

residents of one 24-bed

special care unit and

one 28-bed special care

unit

32 residents of a 46-

bed special care unit

6 months, from 3

months before to 3

months after the 24-

bed unit opened

locked access doors; secure outdoor area; separate lounge, dining area and

nurses’ station; increased staff-to-resident ratio compared to nonspecialized

units in the same two facilities; staff training by the Denver Alzheimer’s

Association Chapter; efforts to involve families.

unlocked access doors with alarms and double doorknobs; special activity

programs; sensory stimulation; reality orientation; personal markers on residents’ doors; orientation boards; ongoing staff training; family support groups.

Benson et al.,

1987 and

Cameron et al.,

1987

1984-1985 no funding source

reported

one year, from just before to one year after

the unit opened

11 residents of a 20

bed special care unit

8 months, from 4

months before to 4

months after the unit

opened

6 months, from 3

months before to 3

months after the unit

opened

“quiet, predictable environment;” increased staff-to-resident ratio compared to

the rest of the facility.

Bullock et al.,

unpublished

manuscript,

1988

1987 no funding source

reported

no funding source

reported

11 residents of a 16-

bed special care unit

closed access doors; separate dining and activity areas; efforts to reduce

stimulation; consistent dally routine; neutral colors and design; no TV or radio;

only one phone; visitor and staff traffic through the unit limited to reduce

stimulation; training programs for staff and families.

Cleary et al.,

1988

not

reported

no funding source

reported

6 residents of a 26-bed

special care unit

4 months, from before

admission to 4 months

after admission for 5

subjects, and one month,

from before admission

to one month after admission for one subject

3 months, from the time

the unit opened to 3

months after it opened

locked access doors; separate dining room and day room; calm, reassuring

approach; flexible daily routine; familiar background music; residents encouraged to bring in personal Items; 40 hours of staff training; efforts to Involve

families.

Greene et al.,

1985

not

reported

Hall et al.,

1966

no funding source

reported

12 residents of a 24-

bed unit that also

housed nondemented

chairfast residents

unlocked access door; minimal remodeling; efforts to reduce stimulation; no

mirrors; no TV; no public address system; home-like atmosphere; textured wall

hangings; chairs placed in the corridor to encourage resting; flexible dally

routine; residents fed In small groups; visitor and staff traffic through the unit

limited to reduce stimulation; no Increase in staff; ongoing staff training; efforts

to involve families; family support groups.

not

reported

locked access doors; resident bedrooms situated on three skies of a large

central space; designated dining and activity areas; open, centrally located

nurses’ station; therapeutic kitchen for residents; lounge for residents and their

families; staff offices located just outside the unit; movable furniture in central

area; washable, vinyl wall coverings in neutral colors; fabric wall hangings;

mirrors in residents’ rooms; large dock; orientation board; color-coded door

jams and bedrooms; residents’ name on bedroom door; toilet In each bedroom.

1973-1974 no funding source

reported

53 residents of 3 identical 40-bed special care

units in a 120-bed nursing home designed for

persons with dementia

19 months, from one

year before to 7 months

after the units opened

Lawton et al.,

1984 and

Liebowitz et al.,

1979

one year, from before to

one year after the unit

opened

McCracken and closed unit; no other features of the unit are described in the study report.

Fitzwater, 1988

not

reported

no funding source

reported

11 residents of a special care unit; unit size

not reported

doorways painted in contrasting colors; enclosed outdoor area with nonpoisonous plants; furniture with rounded edges; medication carts and housekeeping

Mummah-Castillo,

1987

1983-1984 no funding source

reported

10 residents of a 22-

bed special care unit

one year, from 6

months before to 6

carts locked; residents encouraged to bring in personal items; home-like

atmosphere; visual cues; clocks, calendars, and orientation boards; reminiscence therapy; pet therapy; cooking; encourage resident participation In

activities; staff training; staff selected specifically for the unit; efforts to involve

families.

months after admission

SOURCE: Office of Technology Assessment, 1992.
114 . Special Care Units for People With Alzheimer’s and Other Dementias

and eventually reach the same frequency as in the old

unit.

Other findings of Bell and Smith’s study did not

fit their hypothesis. Use of physical restraints, which

was significantly higher in the new unit than the old

unit at the beginning of the study, increased in both

units over the course of the study (22). In addition,

at all times during the study, residents of the old unit

were significantly more likely than residents of the

new unit to exhibit two behaviors defined as

negative by the researchers-being incompletely

dressed and talking to oneself. One “positive”

behavior—talking with others-was significantly

more common in the new unit than the old unit, but

increased over time in the old unit. Thus some

negative behaviors were more common in the old

than the new unit, and one positive behavior

increased in the old unit over time. ‘‘Negative’

behaviors, such as shouting, swearing, and hitting,

were rare on both units, and their frequency did not

change over time.

Benson et al. found statistically significant improvements in mental and emotional status, hygiene,

and other physical functions among 32 residents of

one 46-bed special care unit (24). Compared with

baseline values at the time of the residents’ admission to the unit, significant improvements were

found at both 4 months and 1 year in the following

aspects of the residents’ mental and emotional

status: the residents made more decisions, comprehended more, were more responsive, exhibited

greater interest in themselves and others, and were

judged by the researchers to be less lonely, anxious,

apathetic, depressed, and self-centered. Improvements in hygiene and other physical functions

included increased cleanliness and neatness, better

eating habits, normal bowel habits, and normal

urinary function. Residents also had less difficulty

sleeping, took fewer sedatives, had less diarrhea, and

were less malodorous. No statistically significant

changes were noted over the l-year course of the

study in the proportion of residents who were

dependent in activities of daily living (i.e., bathing,

dressing, eating, transferring, or walking) or in the

proportion of residents who exhibited five behavioral symptoms (i.e., regressive behavior, wandering, nighttime agitation, assaultiveness, and abusiveness) (70).

Bullock et al. found improvements in behavior

among 13 female residents of a 20-bed special care

unit (56).1 The researchers compared the frequency

of 11 behavioral symptoms over an 8-month period

from 4 months before until 4 months after the unit

opened. The 11 behavioral symptoms were agitation, anxiety, combativeness, insomnia, resistiveness, uncooperativeness, restlessness, withdrawal,

verbal abusiveness, yelling, and taking off one’s

clothes. In the 4 months after the special care unit

opened, the frequency of 9 of the 11 behavioral

symptoms was greatly reduced (from 12 to 84

percent, depending on the behavior). The frequency

of the other 2 behavioral symptoms—resistiveness

and verbal abuse-increased 5 percent and 20

percent, respectively. No other negative outcomes

are noted in the study report. On the positive side, the

report notes slight reductions in the dosages of

psychotropic medications received by some of the

residents. The statistical significance of the study’s

findings was not computed.

As part of the study by Bullock et al., brief

interviews were conducted with the unit residents

(56). The residents were asked whether they liked

the unit; whether they were “very happy,” “pretty

happy,” or ‘‘not so happy;’ whether they were

treated well; and whether they were worried or

relaxed. In general, the residents expressed positive

attitudes toward the unit. No attempt was made to

evaluate the reliability or validity of their responses.

Moreover, since the interviews were conducted only

once, after the unit opened, it is not clear whether

there were changes in the residents’ attitudes that

could be attributed to the impact of the special care

unit.

Cleary et al. found statistically significant improvements in several aspects of the functioning and

physical condition of 9 residents of a 16-bed special

care unit which is described in the study report as a

“reduced stimulation unit” (88). Over a 6-month

period from 3 months before to 3 months after their

admission to the unit, the residents’ average scores

improved significantly on the Haycox Dementia

Behavior Scale (176), an assessment instrument that

1 This study diilers from the other studies discussed in this section because the special care unit was in a mental hospital rather than a nursing home.

OTA has included the study in this analysis of evaluative research on special care units because, like the other special care units included in the analysis,

this special care unit is intended to serve only individuals with Alzheimer’s disease and related dementias. Other studies that have evaluated specialized

units in mental hospitals have focused on units that serve elderly persons with a variety of psychiatric conditions as well as dementia.
Chapter 4--Findings From Evaluative Studies ● 115

includes measurements in 8 areas (language/conversation, social interaction, attention/awareness, spatial orientation, motor coordination, bowel and

bladder control, eating and nutrition, and dressing

and grooming). The special care unit residents also

became significantly less agitated; use of physical

restraints was significantly reduced; and the residents’ weight increased. No changes were noted in

residents’ sleep patterns or use of psychotropic

medications. The researchers observed more interactions among residents and between residents and

staff members, but the study design did not include

a measure of these interactions.

As part of the study by Cleary et al. interviews

were conducted with the unit residents to assess their

feelings of security and well-being (88). The residents were asked the same six questions at four times

before and four times after the unit opened. They

were asked whether they felt safe; whether they got

the help they needed; whether they got enough to

eat; whether the unit was “a good place;’ whether

they had a place to sleep; and whether they were

afraid. Nine of the 11 residents in the study sample

completed all the interviews. In general, the residents expressed a high level of security. Their

responses were also highly consistent, suggesting it

is possible to obtain consistent responses from some

nursing home residents with dementia. Whether the

residents’ responses reflect their true feelings is not

known.

Greene et al. found improvements in behavior and

other aspects of functioning among 6 residents of a

26-bed special care unit (160). The researchers

compared the frequency of 10 negative indicators

over a 4-month period for 5 of the residents and over

a l-month period for one resident. The 10 negative

indicators were hostility, agitation, decreased appetite, failure to feed oneself, combativeness, failure to

ambulate, incontinence, inability to dress oneself,

withdrawal, and hallucinations. The frequency of

eight of these indicators decreased to zero over the

course of the study, and the frequency of the other

two indicators-hostility and failure to ambulate—

was greatly reduced. An improvement in cognitive

skills was found in two of the three residents in

whom cognitive skills were measured. An improvement in mood was found in the three residents in

whom mood was measured. The statistical significance of the study’s findings was not computed.

Hall et al. found reduced use of psychotropic

medications and desirable weight gain in residents

of a 24-bed special care unit described in the study

report as a “low stimulus unit” (171). In the

3-month period after their admission to the unit,

psychotropic medication use was reduced or eliminated in 5 of the 12 individuals in the study sample.

Prior to their admission to the special care unit, all

12 individuals had been losing weight. In the 3

months after their admission to the unit, 6 of the

residents gained weight; 5 stopped losing weight,

and one continued to lose. The statistical significance of the study’s findings was not computed.

The study by Hall et al. was intended to evaluate

the effectiveness of the special care unit in reducing

catastrophic reactions, defined by the researchers to

include outbursts of noisiness, agitation, combativeness, sudden withdrawal, increased confusion and

fear, intensified pacing, and nighttime wakefulness

(171). The study did not include quantitative measurements of these indicators, however. The researchers observed a decreased incidence of two of the

indicators-agitation and nighttime wakefulness.

Other positive outcomes were also observed, including increased social interaction among the residents,

decreased wandering, and reduced incidence of

delusions. The researchers point out, however, that

these positive findings are based on subjective

evaluations and that objective measurements of

various outcome indicators are needed.

Lawton et al. found statistically significant increases in friendliness and interest among 53 residents who were moved from a 350-bed nursing

home to three 40-bed special care units in a new

120-bed nursing home (245). The researchers compared the residents’ cognitive and self-care abilities,

behavior, and mood at 4 times in the l-year period

before the move and 2 times, one month and 7

months, after the move. Over the 19-month period of

the study, the subjects showed a significant decrease

in cognitive and self-care abilities. Following the

move, the subjects spent less time in their bedrooms

and more time in the social spaces, but there were no

significant changes in social behavior, involvement

in planned or staff-supervised activities, ambulation,

behavioral symptoms, use of restraints, or time spent

sleeping or doing nothing. There was an increase in

solitary activities and a decrease in self-maintenance

activities. Although the residents were judged by the

staff to be significantly more friendly and interested

after the move, they were also judged to be
116 ● Special Care Units for People With Alzheimer’s and Other Dementias

significantly more depressed. There were no statistically significant changes in any of the other mood

states studied (i.e., anxiety, anger, happiness, amusement, agitation, and tranquility).

Lawton et al. also compared the behavior of 80

residents of the 3 special care units and 40 residents

of the old 350-bed nursing home (245). 2 The

comparison showed the special care unit residents

were significantly more likely than the residents of

the old nursing home to be involved in planned and

staff-supervised activities and significantly less

likely to exhibit behavioral symptoms. On the

negative side, the special care unit residents were

significantly less likely to be involved in selfmaintenance activities. There were no significant

differences between the special care units residents

and the residents of the old nursing home in social

behavior, ambulation, involvement in solitary activities, or time spent sleeping or doing nothing.

McCracken and Fitzwater found improvements in

special care unit residents’ scores on the Haycox

Dementia Behavior Scale (297), (as did Cleary et al.,

discussed earlier). Over the l-year period of the

McCracken and Fitzwater study, 8 of the 11

individuals in the study sample showed improvements in their overall scores on the scale. Improvements were noted in all but two of the measured

characteristics-motor coordination and dressing

and grooming. The three subjects whose overall

scores on the scale did not improve showed the

greatest decline in these two areas, as well as bowel

and bladder control, eating and nutrition, and spatial

orientation. The statistical significance of these

findings was not computed.

Mummah-Castillo found reductions in the dosages of psychotropic medications and desirable

weight changes in residents of a 22-bed special care

unit (312). Over a l-year period from 6 months

before to 6 months after their admission to the unit,

9 of the 10 individuals in the study sample showed

a weight gain, and the dosages of psychotropic

medications were decreased for 7 of the 10 subjects.

The statistical significance of these findings was not

computed. The researchers observed that aggressive

behaviors and catastrophic reactions were rare on the

unit, but the incidence of these behaviors was not

measured.

In Summary, all nine studies found some positive

outcomes of the special care units they evaluated.

The positive outcomes vary from one study to

another, and some of the findings are contradictory.

As noted earlier, if the contradictory findings are

excluded, the only positive outcomes found in more

than one of the nine studies are decreased nighttime

wakefulness, improved hygiene, and weight gain.

These studies are frequently cited as evidence that

special care units are effective. Often the researchers’ general observations, rather than a study’s

specific findings, are cited. In many instances,

findings that are cited from one study are contradicted by findings of another study.

All the studies suffer from one or more problems

that raise questions about the validity of their

findings-both positive and negative. One of these

problems is small sample sizes. The second problem

is the lack of rigorous research design and implementation. In many of the studies, the outcomes to

be measured are not clearly defined, and the

measurement process is more impressionistic than

objective or standardized. As noted earlier, the

statistical significance of the findings was computed

in only four of the nine studies. Failure of the studies

to include a control group is another problem since

without a control group, the impact of the special

care unit cannot be separated from the impact of

other factors that may affect resident outcomes.

Finally, many of the studies were conducted by unit

staff members or other individuals who were involved in planning or operating the unit. These

individuals have an obvious interest in finding

positive outcomes. The potentially powerful effect

of their expectations coupled with small sample

sizes, lack of a rigorous research design, and lack of

control groups means the results of the studies must

be suspect.

Z ‘rh.is component of the study had a pre-post design like the other studies discussed in this SWiOn and an apptUent control group me the studies

in the following section of the chapter. The study is included in this section because the status of the control group is unclear. Some, but not all, of the

80 special care unit residents were among the 40 residents of the old nursing home who constituted the control group (245). The study report provides

no information about the special care unit residents who were not among the 40 residents of the old nursing home that constituted the control group,
Chapter 4--Findings From Evaluative Studies ● 117

EVALUATIVE STUDIES WITH A

CONTROL GROUP: EFFECTS

ON RESIDENTS

OTA is aware of six evaluative studies of special

care units in which a control group was used (see

table 4-2). The samples for these six studies are, on

average, larger than the samples for the studies

discussed in the previous section. The six studies

vary in the outcomes they studied and their duration.

The control groups they used also vary: four of the

studies used a control group consisting of individuals with dementia in nonspecialized nursing home

units that also serve nondemented residents; one

study used a control group consisting of individuals

with dementia in a segregated but nonspecialized

unit; and one study used a control group consisting

of individuals on the waiting list for admission to a

special care unit. As described below, only two of

the six studies found any statistically significant

positive outcomes for the special care unit residents.

Chafetz compared changes in cognitive and behavioral characteristics over a 15-month period in 12

residents of a 30-bed special care unit and 18

residents of a 60-bed nursing home unit that served

only individuals with dementia but provided no

specialized services (80). The study was designed to

test the hypothesis that cognitive abilities would

decline equally over time in residents of the two

units, whereas behavior would decline less in

residents of the special care unit. As shown in table

4-2, the staff-to-resident ratios were similar in the

two units, but the special care unit staff members

were specifically selected and trained to work on the

unit. The special care unit provided family meetings

and a more extensive activity program than the

nonspecialized unit, and a few physical design

features distinguished the special care unit from the

nonspecialized unit. The study found that both

cognitive abilities and behavior worsened over time

in residents of the two units. The special care unit

had no statistically significant effect on residents’

cognitive abilities or their behavior, and there were

no positive outcomes that could be attributed to the

special care unit.

Coleman et al. compared the rate of hospitalization over a l-year period for 47 residents of 2 special

care units and 58 residents of 2 nonspecialized units

in the same nursing home (99). The 58 residents of

the nonspecialized units included 36 individuals

who had a diagnosis of dementia and 22 individuals

who did not have a diagnosis of dementia. The study

was designed to determine whether special care unit

residents are less likely than residents of nonspecialized units to be hospitalized. The staff-to-resident

ratios were the same for the special care units and the

nonspecialized units. The study report does not

describe the differences in physical design or other

features of the units. The study found no statistically

significant difference in the rate of hospitalization

for the special care unit residents and the residents of

the nonspecialized units. There was, however, a

nonsignificant trend for a larger proportion of the

special care unit residents to be hospitalized over the

course of the study (21 percent vs. 14 percent,

respectively). The higher rate of hospitalization for

the special care unit residents was due primarily to

a higher incidence of hip fractures: 9 percent of the

special care unit residents, compared with only 3

percent of the residents of the nonspecialized units,

were hospitalized for hip fractures.

Holmes et al. compared changes in cognitive,

functional, and behavioral characteristics over a

6-month period in 49 residents of 4 special care units

and 44 individuals with dementia in nonspecialized

units in the same 4 nursing homes (195). The study

was designed to measure the impact of a special care

unit vs. a nonspecialized nursing home unit on

individuals with dementia. Table 4-2 lists the many

differences between the special care units and the

nonspecialized nursing homes in terms of staff,

activity programs, and physical design features.

Baseline measurements indicated there were statistically significant differences between the special care

unit residents and the residents of the nonspecialized

units at the start of the study. The special care unit

residents were, for example, more likely than

residents of the nonspecialized units to be disoriented and to exhibit behavioral symptoms. The

special care unit residents were also more likely to

be able to ambulate independently. After 6 months,

the study found little change in any of the measured

resident characteristics, including cognitive abilities, mood, ability to perform activities of daily

living, frequency of behavioral symptoms, sleep

problems, and ability to ambulate independently.

Taking into account differences between the special

care unit residents and residents of the nonspecialized units at the beginning of the study, the

researchers found no statistically significant positive
Table 4-2—Evaluative Studies With a Control Group

Year of Funding Duration of

Citation the Study Source subjects study Changes Made to Create the Special Care Unit

_- - -- ---- Chafetz, 1981

Coleman et al.,

1990

Holmes et al.,

1990

Maas and

Buckwalter,

1990

Rovner et al.,

1990

Wells and Jorm,

1987

1988-1987

1987-1988

not reported

1986-1988

1885-1886

1986

University of Texas

southwestern Medical Center and Its

affiliated Alzheimer’s

Disease Research

Center

University of California, San Francisco, School of Mealicine, and U.S.

Health Resources

and Services Administration

no funding source

reported

National Center for

Nursing Research

Johns Hopkins University’s affiliated

Alzheimer'sDisease

Research Center

no funding source

reported

12 residents of a 30-bed

special care unit and 8 residents of a 60-bed unit In

which individuals with dementia were segregated but

no special services were

provided

46 residents of two 28-bed

special care units and 58

residents of two 28-bed nonspecialized units in the same

facility (of the 58 residents

of the nonspecialized units,

36 had dementia, and 22

did not)

49 residents of special care

units in 4 nursing homes

and 44 residents with de13 residents of a 20-bed

special care unit in a Stateowned veterans home and

9 residents with dementia in

nonspecialized units of the

same facility

14 residents of a 22-bed

special care unit which iS

part of a 31-bed unit and 14

residents with dementia in

nonspecialized units of the

same facility

12 residents of a special

care unit in Australia and 10

individuals with dementia

who were on the waiting list

for the unit and living at

home

13 to 15 months

one year

6 months

2 years

one year

3 months, from just

before admission to

the unit to 3 months

after admission

in the special care unit: access door secured with special locks; secure outdoor

area; 34 hours per week of specialized activities; staff selected specifically for the

unit; staff training over a 10-week period and ongoing training; efforts to involve

families; family meetings every 6 to 8 weeks.

in the comparison unit: no special physical design features; 5 hours per week of

nonspecialized activities; no special staff training or special efforts to involve

families.

no physical design or other special features of the special care units are described

in the study report; the report says that the distinguishing features of the special

care units “are similar to those found in the literature;” the staff-t-resident ratios

were the same on the special care units and the nonspecialized units.

in the special care units: dosed access doors with alarms; furniture with rounded

edges; special activity rooms; nurses’ station located near the exits to facilitate

monitoring residents; special activity programs; reality orientation; music programs;

Increased staff-to-resident ratios; staff training; multidisciplinary team care.

in the comparison units: no special physical design features, activity programs, or

staff training.

in the special care unit: locked access doors; access doors camouflaged with

murals; secure outdoor area; separate day room/dining room; dividers in resident

rooms to provide privacy; residents’ beds dose to the floor; curtains and wall

hangings with velcro fasteners to prevent damage if residents pull on them; safety

mirrors; safety glass; supplies stored out of view; no highly waxed floors; no stairs

In the unit; residents’ lockers and all but one drawer are locked to prevent

rummaging; flexible daily routine; efforts to reduce stimulation; subdivided dining

room to allow residents to eat In small groups; fabric wall decorations; colors that

are “functionally stimulating and reassuring;” orientation signs; piped-in music; pet

therapy; specialized activity programs; activity barrel filled with pliable plastic items

for residents; multidisciplinary team; consistent staff; efforts to involve families.

in the comparison units: no special physical design features, activity programs, or

staff training.

in the special care unit: an activity room; staff training; weekly rounds with a

psychiatrist and internist; staff efforts to identify residents’ specific cognitive

Impairments, to treat depression, delusions, and hallucinations, to recognize

medication side effects, to maintain residents’ physical health, to reduce use of

physical restraints, and to increase participation in activities; 40 hours a week of

specialized activities.

in the comparison units: no special physical design features, activities, or staff

training; less hours of nursing care per resident (2.1 hours/day in the nonspecialized

units vs. 2.9 hours/day In the special care unit).

In the special care unit: corridors designed for wandering; secure outdoor area;

private rooms; several activity rooms; home-like atmosphere; residents encouraged

to bring their own furniture; unit philosophy of “normalization.”

for the comparison group: respite care, adult day care, and in-home services as

needed.

SOURCE: Office of Technology Assessment, 1992.
Chapter 4--Findings From Evaluative Studies ● 119

outcomes that could be attributed to the special care

unit.

Maas and Buckwalter compared changes in cognitive, fictional, behavioral, and other characteristics in 13 residents of a 20-bed special care unit and

9 individuals with dementia in nonspecialized units

in the same facility (265). The study was designed to

measure the effect of a ‘‘low stimulus’ special care

unit vs. nonspecialized nursing home units on

residents with dementia, their families, and the unit

staff members. As noted in table 4-2, many physical

design and other changes were made to create the

special care unit. Extensive baseline data were

collected in the year before the unit opened (264).

After the unit opened, data were collected for one

year at 2-month intervals. Due to subject attrition,

complete data for the 22 subjects are available for

only a 10-month period, from 4 months before to 6

months after the unit opened (265). These data show

no statistically significant differences over time in

the cognitive or functional abilities of the special

care unit residents and the individuals with dementia

in the nonspecialized units. The most frequently

reported behaviors for both groups of residents were

‘‘sleeping/resting, ’ ‘ ‘quiet, ’ and ‘‘pleasant/

happy.” Catastrophic reactions occurred, but their

frequency decreased significantly from baseline

levels for both groups of residents.3 Nevertheless,

catastrophic reactions were significantly less frequent in the special care unit residents than in the

individuals with dementia in the nonspecialized

units. The special care unit residents were also

significantly more likely than the individuals with

dementia in the nonspecialized units to interact with

staff. There were no significant differences between

the two groups in the frequency of their interactions

with other residents or family members. The researchers noted a general trend for the subjects to

become more active after being admitted to the

special care unit. This increased activity included

both positive and negative behaviors. The researchers point out that:

Behaviors such as “screaming/yelling,” “pacing,”

‘‘noisy,’ and “restless,” as well as a decrease in

‘‘cooperative’ behavior may be seen as nonconstructive. Positive behaviors such as “pleasant/

happy, “ “talking/visiting,” “a wake,” and “up and

about,’ were all reported more frequently among the

experimental group. . . Viewed singly, no one behavior (changed) significantly. However, when

viewed (together), it seems that important changes in

overall level of activity were occurring after introduction of the special care unit (265).

Other results of the study show that for their first four

months in the unit, the special care unit residents

were significantly less likely to be physically

restrained than the individuals with dementia on the

nonspecialized units, but for the next 2 months, the

special care unit residents were significantly more

likely to be physically restrained. Use of antipsychotic medications was significantly higher for the

special care unit residents both at baseline and

following their admission to the special care unit.

There was no significant difference between the two

groups in the total number of medications of all

kinds that they were taking. Lastly, the special care

unit residents were significantly more likely to fall

than the individuals with dementia on the nonspecialized units, but the increased incidence of falls

was not accompanied by an increase in injuries due

to falls.

Rovner et al. compared changes in fictional

ability over a l-year period in 14 residents of a

22-bed special care unit and 14 individuals with

dementia in nonspecialized units in the same nursing

home (392). As shown in table 4-2, the special care

unit provided more hours of nursing care and more

activity programs than the nonspecialized units.

Only one physical design change was made to create

the unit. In the view of the researchers, the distinguishing features of the special care unit were the

efforts of its multidisciplinary staff to accomplish

six objectives: 1) to identify residents’ specific

cognitive impairments and associated disabilities,

2) to treat depression, delusions, and hallucinations,

3) to identify medication side effects; 4) to maintain

residents’ physical health; 5) to reduce use of

physical restraints, and 6) to increase residents’

participation in activities. Baseline measurements

indicated that the special care unit residents were

significantly younger, on average, than the residents

of the nonspecialized units and that the special care

unit residents were less likely to be taking medications of all types. The study found that over a l-year

3 c~taS&ophic ~eaction was def~~ in tisstudy as ‘ ‘a reaction (mood change) of the resident in response to Wtit WY aPPe~ to s~to ~ ~

stimuli (bathing, dressing, having to go to the bathmo~ a question asked of the person) which can be characterized by weeping, blushing, anger,

agitatio~ or stubbornness. The reaction is not necessarily very dramatic or violen~ but may appear over-emotional or not appropriate for the stimulus’

(265).
120 . Special Care Units for People With Alzheimer’s and Other Dementias

period, there was much less decline in the fictional

abilities of the special care unit residents than the

residents of the nonspecialized units: 14 percent of

the special care unit residents and 64 percent of the

residents of the nonspecialized units declined in

their “level of care” as determinedly the number of

activities of daily living with which they needed

assistance. This statistically significant positive

outcome is attributed by the researchers to the

impact of the special care unit.

Wells and Jorm compared changes in cognitive,

functional, and behavioral characteristics over a

3-month period in 12 residents of an Australian

special care unit and 10 individuals who were on the

waiting list for the unit and living in the community

(489). The study was designed to compare the effect

on individuals with dementia and their families of

being in a special care unit vs. being deferred from

admission. The study findings with respect to the

impact on the subjects’ families are discussed later

in this chapter. The physical changes made to create

the special care unit included an environmental

design to allow wandering, a secure outdoor area,

and efforts to create a home-like atmosphere. Most

of the individuals on the waiting list received respite

care, and some received adult day care or in-home

services. The study found that over a 3-month

period, the cognitive and functional abilities and

behavior of all the subjects declined. Except for a

temporary worsening of behavioral symptoms among

the special care unit residents in the first month of

the study, there was little difference in the rate of

decline in these characteristics between the special

care unit residents and the individuals on the waiting

list.

In summary, four of the six evaluative studies that

used a control group found no statistically significant positive resident outcomes that could be

attributed to the special care unit. One of the studies

with a positive resident outcome found that over a

l-year period the special care unit residents showed

significantly less decline than individuals with

dementia in the nonspecialized units in their ability

to perform activities of daily living (392). The three

other studies that used a control group and measured

residents’ ability to perform activities of daily living

found no significant effect of the special care units

in this area. The second study with positive resident

outcomes found that special care unit residents

exhibited significantly fewer catastrophic reactions

than residents with dementia in the nonspecialized

units (265). The special care unit residents also

interacted significantly more with staff members.

The research design and implementation of these

six studies are far more rigorous than the design and

implementation of the nine studies discussed earlier

that did not use a control group. The outcomes are

more precisely defined and measured in these six

studies, and their use of a control group increases the

presumed validity of their findings.

On the other hand, there are one or more problems

with each of the studies that could affect the validity

of their findings-both positive and negative. One

problem is that several of the studies were conducted

by individuals who were involved in planning or

working on the special care unit that was the focus

of the study. In one of the two studies that found a

positive resident outcome (392), the nurses who

evaluated the residents’ ability to perform activities

of daily living were unit staff members whose

judgments about the residents could have been

biased by their expectations about the effectiveness

of the special care unit.4

A second problem that could affect the validity of

the findings of some of the studies discussed in this

section is selection bias. If the special care unit

residents and the control group subjects differed in

significant ways at the start of the studies, these

differences, rather than the impact of the special care

unit, could account for any observed differences in

outcomes. To address this problem, all six studies

discussed in this section compared the characteristics of the special care unit residents and control

group subjects at the beginning of the study, and

several of the studies used statistical methods to

correct for any observed differences in the two

groups.

As discussed in chapter 1, randomization of

subjects to the special care unit or the control group

would be the ideal way to address the problem of

entry point differences among subjects. Two of the

studies discussed in this section (265,489) randomly

assigned subjects to the special care unit or the

4111 addition to bias iIIrm&KXXI by StimemberS’ expectations, a more subtle form of bias could arise in this and other St’UdieS thttt rely On sti

members’ evaluations of residents’ ability to perform activities of daily living as a result of differences in the way impairments in activities of daily living

are pereeived on a special care unit vs. a nonspecialized nursing home unit.
Chapter 4--Findings From Evaluative Studies ● 121

control group. Randomization of subjects apparently

worked well in the 3-month study by Wells and Jorm

(489). Randomization also worked well initially in

the longer study by Maas and Buckwalter but

eventually broke down, in part because some families were reluctant to move their relative who was

doing well in a nonspecialized unit to the special

care unit to meet the requirements of the study

design (265).

A third methodological problem—and one that

could affect the validity of the findings of Rovner et

al. (392)—is failure to measure differences in the

cognitive abilities of the special care unit residents

and control group subjects at the end of a study. As

noted earlier, the outcomes measured in the study by

Rovner et al. were changes in the subjects’ ability to

perform activities of daily living (392). In individuals with dementia, ability to perform activities of

daily living is related to some degree to cognitive

ability (369,508). The special care unit residents and

control group subjects in this study did not differ

significantly in their cognitive abilities at the beginning of the study, but their cognitive abilities were

not measured at the end of the study, and significant

differences could have developed. If such differences did develop, they, rather than the impact of the

special care unit, could account for the observed

differences in the proportion of special care unit

residents vs. control group subjects that declined in

their ability to perform activities of daily living.

In addition to these methodological problems,

there are difficulties in interpreting the findings of

the six evaluative studies. In all six studies, the

special care units differ in many ways from the

control group settings. It is unclear whether particular features of the special care units or their overall

milieu account for the studies’ findings. A third

possibility proposed by Rovner et al. as an explanation for the findings of their study is that increased

staff attention to the unit residents could account for

the positive outcome, irrespective of any special

features of the unit (392). In all these studies, it is

also possible that certain aspects of the special care

units (i.e., particular features, milieu, or staff attention) have a positive impact and other aspects have

a negative impact, and that the two types of impacts

cancel each other out. Still another possibility is that

certain aspects of the special care units have a

positive impact on some residents and a neutral or

negative impact on other residents, and that these

impacts cancel each other out. Small sample sizes,

lack of a common taxonomy for classifying individuals with dementia across studies, and lack of a

precise description of the features of each of the

special care units make it impossible at present to

differentiate among these various explanations.

The one study that found a significant positive

effect of a special care unit on the residents’ ability

to perform activities of daily living focused on a unit

that was created with the addition of an activity room

but no other physical design changes (392). Instead,

the “special” features of the unit, in the view of the

researchers, were staff efforts to identify residents’

specific cognitive impairments, to treat depression,

delusions, hallucinations, and medication side effects, to maintain residents’ physical health, and to

increase their involvement in activities. Ongoing

involvement of a psychiatrist on the staff seems to be

unique to this study. Whether any of these features

are different enough from the features of the special

care units in the other studies to explain their

contradictory findings cannot be determined from

the available data.

STUDIES OF PARTICULAR

FEATURES AND INTERVENTIONS

IN SPECIAL CARE UNITS:

EFFECTS ON RESIDENTS

Unlike studies that evaluate the overall impact of

a special care unit, some studies evaluate the effect

of particular features and interventions in a special

care unit. Such studies do not constitute special care

unit research in the same sense as the studies

discussed earlier in this chapter because the features

and interventions generally can be used in nonspecialized nursing home units and other residential and

nonresidential care settings as well as in special care

units. The research to evaluate these features and

interventions can also be conducted in other settings.

For these reasons, studies of particular features and

interventions in special care units are not discussed

in the same detail in this report as studies that

evaluate the overall impact of the units.

The particular features and interventions that have

been studied most in special care units are various

devices and visual barriers to stop individuals with

dementia from escaping or wandering away from the

unit. To OTA’s knowledge, the frost research on

interventions of this kind was a study conducted in

the geriatric ward of a psychiatric hospital (198).
122 ● Special Care Units for People With Alzheimer’s and Other Dementias

That study found that when strips of tape were

placed in any of four different grid patterns on the

floor in front of the exit doors, the frequency with

which demented patients approached and touched

the doors decreased significantly. Two other studies

have attempted unsuccessfully to replicate these

results in special care units (75,77,316). Both studies

found that use of strips of tape in front of the exit

doors resulted in a temporary increase but no

significant long-term change in the number of times

per day the special care unit residents opened the exit

doors.

Other interventions to stop individuals with dementia from escaping or wandering away have also

been tested in special care units. Chafetz found that

use of a second spring-loaded latch on the exit doors

stopped residents of one special care unit from

opening the doors (75,77). Namazi et al. found that

concealing the exit doors with either a beige cloth or

a green patterned cloth stopped residents of another

special care unit from opening the exit doors (316).

Two other interventions-painting the door knob

the same color as the door and using a door knob

cover that allows the knob to turn only when

pressure is applied-also decreased the frequency

with which special care unit residents opened the

exit door (316). The latter two interventions were not

as effective as concealing the doorknob with apiece

of cloth, however.

Researchers at the Corinne Dolan Alzheimer’s

Center in Chardon, OH, have conducted studies on

many other features and interventions in special care

units. The center was designed to facilitate research

of this kind. It has 2 separate but essentially identical

wings, each housing 12 residents, so alternate

interventions that require physical design or other

modifications to the unit can be tested in the 2 wings

simultaneously and their outcomes compared. Eight

interventions studied recently at the center are:

1.

2.

use of “significant” vs. “nonsignificant”

personal belongings in showcases next to

residents’ rooms to help them identify their

rooms;

use of clearly visible toilets in residents’ rooms

vs. toilets that are concealed behind a curtain

to help them locate the bathroom and remain

continent;

3.

4.

5.

6.

7.

8.

use of certain types, colors, and placements of

signs to help residents locate the bathrooms

and remain continent;

use of partitions of various heights in the

dining room and the activity rooms to reduce

distractions for residents;

use of unlocked vs. locked doors to an enclosed courtyard to enhance residents’ sense of

autonomy;

use of special closet doors that allow residents

to see only one set of clothing at a time vs.

ordinary closet doors to help residents dress

themselves independently;

use of refrigerators with glass doors vs. ordinary refrigerators with opaque doors to allow

residents to see food and thereby encourage

them to eat when they are hungry; and

use of familiar tasks (e.g., washing dishes and

dusting) vs. unfamiliar tasks (e.g., untangling

a box of hangers) to engage residents’ attention

and sustain their interest (314).

Results of some of these studies were published in

late 1991 (317), and results of the other studies will

be published in 1992.

The Dementia Study Unit in the Geriatric Research, Education, Clinical Center (GRECC) at the

E.N. Rogers Memorial Veterans Hospital in

Bedford, MA, has also conducted studies on many

particular interventions in special care units. The

Dementia Study Unit includes three special care

units that serve elderly veterans with dementia. The

interventions evaluated in the Dementia Study Unit

include:

●

●

●

●

●

use of a hospice-like approach in the care of 40

severely demented special care unit residents

(474);

substitution of normal feeding for tube feeding

in six special care unit residents who were

being tube fed on admission to the unit (475);

use of a few beds on one of the special care units

to provide respite care for 22 veterans with

dementia who were still living in the community (238,405);

use of antibiotics vs. palliative measures to treat

fevers in special care unit residents (135); and

use of dietary changes and enforced rest periods

to maintain normal body weight in six special

care unit residents who paced constantly (376).

Studies to evaluate the impact of other features and

interventions have been conducted or are underway
Chapter 4--Findings From Evaluative Studies ● 123

in special care units at several other VA medical

centers (159).

An analysis of the results of studies of particular

features or interventions in VA and nonVA special

care units and a comparison of these results with the

results of similar studies conducted in nonspecialized nursing home units and other residential and

nonresidential care settings is beyond the scope of

this report. The important point is that the existence

of special care units probably encourages research to

evaluate particular features and interventions. It is

easier and more efficient to conduct this type of

research in a special care unit, in part because all the

residents have dementia. In addition, as discussed in

chapter 1, the existence of special care units focuses

attention on the special needs of nursing home

residents with dementia and thereby encourages

research to evaluate particular features and interventions to address those needs.

Research on particular features and interventions

may help to explain the findings of studies that

evaluate the overall impact of special care units. If

particular features or interventions are shown to be

effective or ineffective in general or for certain types

of residents, those findings may explain the contradictory results of studies that evaluate the overall

impact of the units. More importantly, however, this

research may identify features and interventions that

can be used not only in special care units but also in

nonspecialized nursing home units and other residential and nonresidential care settings to improve

the care of individuals with dementia.

STUDIES THAT EVALUATE THE

EFFECTS OF SPECIAL CARE UNITS

ON UNIT STAFF MEMBERS

OTA is aware of four studies that evaluate the

effect of special care units on unit staff members

over time. Two frequently cited reasons for establishing special care units are: 1) a belief that training

about dementia can be more easily and effectively

provided for the staff of a special care unit than for

the staff of nonspecialized nursing home units and

therefore that special care unit staff members are

likely to be more knowledgeable about dementia,

and 2) a belief that it is less stressful for staff

members to work with residents with dementia on a

special care unit than on nonspecialized units. Three

of the available studies measured the effect of a

special care unit on staff members’ knowledge about

dementia; two studies measured the effect of a

special care unit on staff stress and burnout, and one

study measured the extent to which special care unit

and other staff members were disturbed by the

behavioral symptoms of residents with dementia.

Chafetz and West compared knowledge about

dementia among 1) 11 staff members of one special

care unit, 2) 13 staff members of nonspecialized

units in the same nursing home, and 3) 30 staff

members of nonspecialized units in another nursing

home (81). During the 9- to 12-month period of the

study, the special care unit staff members participated in 10 weekly training sessions about dementia.

The staff of the nonspecialized units did not receive

this training. All staff members’ knowledge about

dementia was measured at the beginning and end of

the study using a 20-item true-false quiz. The study

found that despite the training received by the

special care unit staff members, there were no

significant differences among the three groups of

staff members in the extent to which their test scores

changed over time. The researchers concluded that

the training provided for the special care unit staff

members did not have a significant or lasting effect

on their knowledge about dementia.

Maas and Buckwalter compared knowledge about

dementia among 21 special care unit staff members

and 55 staff members of nonspecialized units in the

same facility (265). During the frost 3 months after

the special care unit opened, its staff members and

the staff members of the nonspecialized units

received 80 hours of training about dementia. The

study found that during the baseline period before

the unit opened and throughout the course of the

study, the special care unit staff members scored

slightly higher than the staff members on the

nonspecialized units on a 33-item test of knowledge

of dementia, but this difference was not statistically

significant. There was also no statistically significant change in the scores of the special care unit staff

members over the course of the study. Registered

nurses (RNs) scored significantly higher than licensed practical nurses (LPNs), nurse aides, and

non-nursing staff members, regardless of whether

they worked on the special care unit or the nonspecialized units.

Cleary et al. compared knowledge of dementia

among the staff of a 16-bed special care unit at one

point 3 months before the unit opened and again 3

months after it opened (88). Despite a staff training

328-405 - 92 - 5 Ql 3
124 . Special Care Units for People With Alzheimer’s and Other Dementias

program conducted during this time period, the

study found no significant change in the staff

members’ knowledge of dementia. This study did

not have a control group.

With respect to job satisfaction, Cleary et al.

compared special care unit staff members’ scores on

a questionnaire administered at one point 3 months

before the 16-bed unit opened and again 3 months

after it opened (88). The 83-item questionnaire

addressed 6 aspects of job satisfaction (working

conditions, professional considerations, professional

preparation, emotional climate, supervision, and

social significance). The study found no significant

change in the staff members’ scores before and after

the unit opened. On the positive side, the researchers

point out that the staff members did not seem to react

negatively to the isolation of the special care unit, as

might have been expected. Moreover, in open-ended

interviews, some staff members reported they were

spending much less time retrieving patients who

wandered away from the unit and were experiencing

fewer interruptions when caring for patients. No

measurements were made of the latter two outcomes.

Using the same 83-item questionnaire, Maas and

Buckwalter compared job satisfaction among 21

special care unit staff members and 55 staff members

on nonspecialized units in the same facility (265).

The study found job satisfaction was “moderately

high” for both groups of staff members during the

baseline period before the special care unit opened

and throughout the course of the study. There was

little difference between the scores of the two groups

of staff members on the questionnaire as a whole or

any of its six subscales. RNs scored significantly

higher than LPNs, nurse aides, and non-nursing staff

members on one of the subscales-satisfaction with

professional preparation-regardless of whether they

worked on the special care unit or the nonspecialized

units. After the special care unit opened, LPNs,

nurse aides, and other non-nursing staff members

who worked on the special care unit scored significantly higher on the same subscale than comparable

staff members on the nonspecialized units. There

were no significant differences for the staff members

on any of the other subscales.

With respect to staff stress, Maas and Buckwalter

found a generally low level of stress among 15

special care unit staff members and 49 staff members

on nonspecialized units in the same facility both

before and after the special care unit opened (265).

The special care unit staff members consistently

reported less stress than the staff members on the

nonspecialized units. Nevertheless, the study found

that after the special care unit opened, its staff

members experienced a statistically significant reduction in stress, whereas the staff members on the

nonspecialized units experienced an increase in

stress. The special care unit staff members also had

somewhat lower scores than the other staff members

on a test of three indicators of burnout-emotional

exhaustion, depersonalization, and lack of a feeling

of personal accomplishment; this difference in

scores was statistically significant for depersonalization but not for the other two indicators. The

study’s findings with respect to use of sick leave,

leave without pay, and overtime are still being

analyzed (54).

Finally, in their study of special care units and

nonspecialized units in the same four nursing homes,

Holmes et al. compared staff members’ attitudes

toward residents’ behavioral symptoms (195). At the

beginning of the study, although the special care unit

residents had significantly more behavioral symptoms than the demented residents of the nonspecialized units, there was no significant difference

between the staff members in the two types of units

in the extent to which they reported being disturbed

by the residents’ behavioral symptoms. After 6

months, there was still no significant difference

between the staff members in the two types of units

in this regard.

In addition to these four longitudinal studies, two

descriptive studies have addressed the issue of staff

stress in special care units. One study that compared

staff stress on two special care units found that stress

was related to the severity of the residents’ impairment (506). Staff members on the unit with more

impaired residents were more likely to report feeling

highly stressed than staff members on the unit with

less impaired residents. Interestingly, many of the

specific types of stressors identified by staff members on both units were unrelated to resident

characteristics and therefore might be expected to

occur as frequently in work with nondemented

residents and on nonspecialized nursing home units

as on special care units. In another study of a

nonrandom sample of special care units, the researchers concluded staff stress was related to

staff-to-resident ratios: units with less staff per

resident were much more likely than units with more
Chapter 4--Findings From Evaluative Studies ● 125

staff per resident to report problems with staff stress

(332).

The University of North Carolina study of 31

randomly selected special care units and 32 matched

nonspecialized units in 5 States found staff turnover

was significantly lower for RNs and LPNs on the

special care units (291). Turnover was also lower for

nurse aides on the special care units, but this

difference was not statistically significant. Accurate

interpretation of these findings is difficult because

they are based on data collected at one point in time.

It is possible that pre-existing differences between

the staff members on the two types of units rather

than differential effects of the units account for the

differences in staff turnover.

I nsummary, the three longitudinal studies that

measured staff knowledge of dementia found no

statistically significant effect of the special care

units. One of the two studies that measured job

satisfaction found a statistically significant improvement in the scores of LPNs, nurse aides, and other

non-nursing staff of the special care unit on one of

six aspects of job satisfaction. There were no other

significant effects of the special care units on job

satisfaction. The one longitudinal study that measured staff stress and burnout found a statistically

significant reduction in stress among the special care

unit staff members and a statistically significant

difference between the special care unit staff members and other staff members on one of three

indicators of burnout. There were no other significant effects of the special care unit on staff stress or

burnout. Lastly, the study that measured the extent

to which staff members were disturbed by residents’

behavioral symptoms found no significant differences over time for the special care unit staff

members and no significant difference between the

special care unit staff members and other staff

members in this respect.

STUDIES THAT EVALUATE THE

EFFECTS OF SPECIAL CARE UNITS

ON RESIDENTS’ FAMILIES

OTA is aware of four studies that evaluate the

effect of a special care unit on residents’ families

over time. One study conducted in Australia compared the psychological status of 12 family members

of individuals with dementia who were admitted to

a special care unit and 10 family members of

individuals with dementia who were placed on the

waiting list and offered in-home services (489). At

the beginning of the study, the family members in

both groups showed high levels of symptoms on

psychological tests of anxiety, depression, guilt, and

grief. After 3 months, family members of the special

care unit residents showed a statistically significant

reduction in symptoms on all the tests. In contrast,

family members of the individuals who had been

placed on the waiting list showed little change in any

of the symptoms, except guilt, which was slightly

reduced.

Chafetz measured knowledge about dementia and

attitudes toward older people among 12 family

members of residents of a 30-bed special care unit

(76). Anxiety and depression were measured among

9 of the 12 family members. The study found no

statistically significant changes over a l-year period

in any of these areas, although there were some

nonsignificant improvements in each of the areas

except anxiety. This study had no control group.

Cleary et al. measured family satisfaction with

care among 11 family members of individuals with

dementia who were moved from a nonspecialized

unit to a new special care unit in the same nursing

home (88). Family satisfaction with the care provided by the nonspecialized unit was quite high, as

measured by a 38-item satisfaction questionnaire;

nevertheless, family satisfaction increased significantly in the frost 3 months after the special care unit

opened. This study had no control group.

In addition to the questionnaire, Cleary et al.

conducted open-ended telephone interviews with

the family members (88). According to the study

report, only 7 of the 11 family members visited their

relative with dementia frequently enough in the

special care unit to be able to respond in any detail

to the open-ended questions. These seven family

members reported their relative with dementia was

less agitated in the special care unit than he or she

had been in the nonspecialized unit. Five of the

seven family members also reported they were better

able to communicate with their relative in the special

care unit. None of the seven family members

expressed concern that the special care unit was

isolated, and none described difficulties in visiting.

Lastly, Maas and Buckwalter compared family

satisfaction with care at 2-month intervals over a

l-year period among family members of special care

unit residents and residents with dementia in nonspecialized units of the same facility (265). Due to
126 . Special Care Units for People With Alzheimer’s and Other Dementias

subject attrition and replacement, the number of

family members varied over the course of the study,

from 17 to 22 family members of special care unit

residents and from 12 to 21 family members of

individuals with dementia in nonspecialized units.

Both groups of family members reported fairly high

levels of satisfaction with the care their relative was

receiving. They tended to be most satisfied with their

relative’s overall care and least satisfied with the

nursing care he or she was receiving. Family

members of the special care unit residents had

somewhat higher satisfaction scores than family

members of the individuals with dementia in the

nonspecialized units, but these differences were not

statistically significant.

In addition to these four longitudinal studies, a

number of cross-sectional studies have compared

various characteristics of families of special care

unit residents and families of individuals with

dementia in nonspecialized nursing home units.

Since the findings of these studies are based on data

collected at one point in time, it is unclear whether

they are attributable to the effect of the special care

units vs. the nonspecialized units or to preexisting

differences between the two groups of families.

The study by Chafetz discussed above had a

cross-sectional component that compared knowledge of dementia, attitudes toward older people,

anxiety, depression, and guilt among three groups of

family members: 1) 18 family members of special

care unit residents, 2)7 family members of residents

of a nonspecialized nursing home unit that served

both demented and nondemented residents, and 3) 8

family members of residents of a unit that served

only individuals with dementia but provided no

special services (76). The study found no significant

differences between family members of the special

care unit residents and family members of residents

of the two nonspecialized units in any of the

measured characteristics. Interestingly, all three

groups of family members had low levels of anxiety,

depression, and grief. Moreover, in comparison with

family members of the individuals in the segregated

but nonspecialized unit, family members of the

special care unit residents were significantly more

depressed and anxious.

A small pilot study done by researchers at the

University of North Carolina found that families of

individuals with dementia in one special care unit

were, on average, more likely than families of

individuals with dementia in two nonspecialized

units to be satisfied with the physical aspects of the

unit and the care their relative received and to feel

their relative with dementia was better off in the unit

than at home (292). The findings differed for the two

nonspecialized units, however. Compared with families of the special care unit residents, families of

individuals with dementia in one of the nonspecialized units were as satisfied with the care their

relative received, more satisfied with the physical

aspects of the care environment, and more likely to

believe their relative was better off in the unit than

at home. In contrast, families of the residents in the

other nonspecialized unit were less likely than

families of the special care unit residents to be

satisfied with the physical aspects of the unit and less

likely to believe their relative was better off in the

unit than at home.

Another small pilot study of two special care units

and two nonspecialized nursing home units in

California found that families of the special care unit

residents were less likely than families of residents

of the nonspecialized units to be satisfied with the

physical aspects of the unit and less likely to believe

their relative was better off in the unit than at home

(256). Families of the special care unit residents

were also less likely to be satisfied with the number

of staff members, the adequacy of the care received

by their relative, and the willingness of staff

members to discuss the family members’ concerns.

Finally, the University of North Carolina study of

31 randomly selected special care units and 32

nonspecialized nursing home units in 5 States found

that families of the special care unit residents were

significantly more likely than families of individuals

with dementia in the nonspecialized units to visit

their relative regularly (413).

Accurate interpretation of the findings of these

cross-sectional studies is difficult because the findings are based on data collected at one point in time

and therefore cannot be attributed with certainty to

the differential impact of the special care units vs.

the nonspecialized units. It is possible, for example,

that the finding of the University of North Carolina

study--i.e., that families of special care unit residents were significantly more likely than families of

individuals in the nonspecialized units to visit their

relative with dementia—reflects pre-existing differences between the two groups of families rather than

the impact of programs and policies of the two types
Chapter 4--Findings From Evaluative Studies ● 127

of units that might encourage or discourage family

visiting.

Insummary, two of the four longitudinal studies

that evaluate the impact of special care units on

residents’ families had statistically significant positive findings. One of the studies found a significant

increase in family members’ satisfaction with care,

and the other study found a significant reduction in

family members’ feelings of anxiety, depression,

guilt, and grief. The other two longitudinal studies

found no significant differences in these areas. The

two studies that had statistically significant positive

findings were much shorter than the two studies that

did not have significant positive findings (3 months

vs. 1 year, respectively).

One of the four cross-sectional studies had a

statistically significant positive finding with respect

to the frequency of visiting by families of the special

care unit residents, but it is unclear whether this

finding is attributable to the impact of the special

care units. The findings with respect to family

satisfaction with care are contradictory, perhaps

reflecting differences among the particular units in

the study samples.

CONCLUSION

Based on the preceding review of findings from

the available evaluative studies, some conclusions

can be drawn about the effectiveness of special care

units. Table 4-3 lists OTA’s conclusions from the

studies’ findings. In general, these studies show few

positive outcomes of special care units. With respect

to residents’ ability to perform activities of daily

living, the findings of studies that did not use a

control group are contradictory. Three of the studies

that used a control group and measured residents’

ability to perform activities of daily living found no

significant effect of the special care units. In

contrast, one study (392) found less decline in ability

to perform activities of daily living over a l-year

period among the special care unit residents than

among residents of the nonspecialized units. Likewise, three of the studies that used a control group

and measured residents’ behavioral symptoms found

no significant effect of the special care units. In

contrast, one study (265) found fewer catastrophic

reactions among the special care unit residents than

among residents of the nonspecialized units. Only

one of the four studies that measured the effect of a

special care unit on the unit staff members found any

significant positive outcomes. The findings with

respect to family members’ feelings of depression,

anxiety, and guilt and their satisfaction with care are

contradictory.

As noted at the beginning of this chapter, the fact

that many of the available evaluative studies do not

show significant positive outcomes of special care

units is surprising. The failure of most of the studies

to show the expected positive outcomes is attributed

by some commentators to methodological problems.

The preceding discussion has noted many methodological problems with the available studies. As

discussed in chapter 1, there are also numerous

difficult conceptual and methodological issues involved in designing special care unit research. These

conceptual and methodological issues include uncertainty about which outcomes should be measured; the difficulty of measuring certain outcomes in

individuals with dementia; the lack of validated

instruments for measuring these outcomes; the

difficulty of identifying and correcting for differences between special care unit residents and

residents of nonspecialized units that could affect

the study outcomes; and attrition in sample sizes

over time which means even studies that started with

a sample of a respectable size may end up with

usable data on so few individuals that only a very

strong effect of the special care unit could be

detected.

Methodological problems and the difficult conceptual and methodological issues involved in

designing special care unit research probably explain part of the failure of many of the available

studies to find positive outcomes. Moreover, it must

be noted that very few evaluative studies of special

care units have been conducted thus far. The

preceding sections discuss a total of only 15 studies

that have measured impacts on residents and a few

additional studies that have measured impacts on

residents’ families and/or unit staff members. On the

other hand, some of the available studies, particularly the studies that used a control group, are well

designed and carefully conducted, despite methodological difficulties. The special care units they

studied incorporated the patient care philosophies,

staff training, programmingg, and physical design

features recommended by special care unit advocates, and the researchers used accepted statistical

methods to correct for baseline differences among

the subjects that could affect the study outcomes.

Thus, it is unlikely that the failure of these studies to
128 . Special Care Units for People With Alzheimer’s and Other Dementias

Table 4-3-OTA’S Conclusions From the Evaluative Studies of Special Care Units

● Evaluative studies of special care units that did not use a control group have found a variety of positive

outcomes in special care unit residents. If contradictory findings are excluded, the positive outcomes found

in more than one of these studies are decreased nighttime wakefulness, improved hygiene, and weight gain.

● A few evaluative studies of special care units that did not use a control group have found improvements over

time in the important areas of residents’ ability to perform activities of daily living and residents’ behavioral

symptoms, but an equal number of studies of this type have not found such improvements.

● For of the six evaluative studies of special care units that used a control group have found no statistically

significant differences between the special care unit residents and the control group subjects in the following

areas: cognitive abilities, ability to perform activities of daily living, behavioral symptoms, mood, and rate

of hospitalization. Two of the six studies of this type found certain statistically significant positive resident

outcomes: one study found that over a l-year period, 14 special care unit residents showed significantly less

decline than 14 residents with dementia in nonspecialized nursing home units in their ability to perform

activities of daily living; the other study found that 13 special care unit residents had significantly fewer

catastrophic reactions than 9 residents with dementia in nonspecialized nursing home units; the 13 special

care unit residents also interacted significantly more with the unit staff members. These two studies had no

other statistically significant positive resident outcomes.

● Evaluative studies of particular features and interventions in special care units have focused primarily on

methods to deter individuals with dementia from escaping or wandering away from the unit. The most

successful methods identified thus far are latches and locks the residents cannot open and various methods

of concealing the exit doors.

. Three of the four studies that evaluated the impact of special care units on the unit staff members found no

statistically significant effects. One of the 4 studies of this type found a statistically significant reduction in

staff stress among 15 special care unit staff members and a statistically significant difference between the

15 special care unit staff members and 49 staff members on nonspecialized nursing home units in one of

three indicators of burnout. The study also found a statistically significant improvement in the scores of 16

special care unit staff mernbers (licensed practical nurses, nurse aides and other non-nursing staff members)

on 1 of 6 indicators of job satisfaction. None of the three studies that measured staff knowledge of dementia

found any significant effect of the special care unit.

. Two of the four studies that evaluated the impact of special care units on the residents’ families had

statistically significant positive findings. One of the studies found a significant increase in the family

members’ satisfaction with the care provided for their relative with dementia, and the other study found a

significant reduction in the family members’ feelings of anxiety, depression, guilt, and grief. The other two

studies of this type found no significant changes in either of these areas. One cross-sectional study found

that families of special care unit residents are more likely than families of individuals with dementia in

nonspecialized units to visit their relative regularly, but it is not clear whether this finding is attributable to

the effect of the special care unit or to preexisting differences between the two groups of families.

SOURCE: Offke of ‘lkhnology Assessment, 19924

show positive outcomes is due entirely to methodo- effect of special care units is on residents’ quality of

logical problems. Alternate explanations include the

possibility that some or many of the features

recommended for special care units are not effective

and the possibility that some of the recommended

features have a positive effect on some or all

residents, families, and staff members, that other

features have a negative effect, and that these

positive and negative effects cancel each other out.

Still another possibility is that the primary positive

life-an outcome that is difficult to define operationally and one that has not been measured directly

in any of the studies conducted thus far. Further

research is needed to differentiate among these and

other possible explanations.

Research on specific interventions in special care

units may help to explain the findings of studies that

evaluate the overall effect of the units by showing

that certain interventions have positive outcomes
Chapter 4--Findings From Evaluative Studies ● 129

and others do not. This type of research is also

important because some and perhaps many interventions that are shown to be effective in special care

units can also be used in nonspecialized nursing

home units, residential care facilities, and other

settings to improve the care of individuals with

dementia in these settings.

Finally, it is important to note certain findings of

several of the studies discussed in this chapter that

do not fit with widely held beliefs about nursing

home residents with dementia, their families, and

nursing home staff members who work with residents with dementia:

three studies found that the incidence of behavioral symptoms was much lower than expected

among residents with dementia (22,265,312);

one study found that three groups of family

members—family members of special care unit

residents, family members of residents of a

nonspecialized nursing home unit, and family

members of residents of a unit in which

●

●

individuals with dementia were segregated but

no special services were provided—had much

lower levels of anxiety, depression, and guilt

than expected (76);

two studies found moderately high family

satisfaction with the care provided for individuals with dementia in nonspecialized nursing

home units (88,265,266); and

one study found that staff members in four

special care units and four nonspecialized

nursing home units were not particularly disturbed by the residents’ behavioral symptoms

(195).

It is unclear whether these findings reflect unique

characteristics of particular study samples or are

more generally representative. Certainly, if the

baseline levels of behavioral symptoms among

residents, negative feelings among family members,

and distress among staff members are low in general

or in particular study samples, it is unrealistic to

expect large positive changes in a special care unit.
Chapter 5

Regulations And Guidelines For

Special Care Units
Contents

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133

THE EXISTING REGULATORY STRUCTURE FOR NURSING HOMES . . . . . . . . . 134

Federal Regulations for Medicare and Medicaid Certification of Nursing Homes . . . 134

State Licensing Regulations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138

State Certificate of Need Regulations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138

Other State and Local Government Regulations That Apply to Nursing Homes . . . . . 138

Survey and Certification Procedures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139

State Long-Term Care Ombudsman Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 139

Summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140

STATE REGULATIONS AND OTHER STATE POLICIES FOR

SPECIAL CARE UNITS . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140

Six States’ Regulations for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 141

States That Are Developing or Considering Developing Regulations for

Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . 146

States That Have Developed or Are Developing Guidelines for Special Care

Units or for the Care of People With Dementia in All Nursing Homes . . . . . . . . . . . 147

States That Have Certificate of Need Exceptions for Special Care Units . . . . . . . . . . . 148

Other State Policies for Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149

summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149

SPECIAL CARE UNIT GUIDELINES DEVELOPED BY OTHER PUBLIC

AND PRIVATE ORGANIZATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151

The American Association of Homes for the Aging-’ ‘Best Practices for Special

Care Programs for Persons With Alzheimer’s Disease or a Related Disorder” . . . 151

The Massachusetts Alzheimer’s Disease Research Center—’ Blueprint for a

Specialized Alzheimer’s Disease Nursing Home” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152

The Alzheimer’s Disease Education and Referral Center—’ ‘Standards for

Care for Dementia Patients in Special Care Units” . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152

The University of South Florida’s Suncoast Gerontology Center—"Draft Guidelines

for Dementia Specific Care Units (DSCUs) for Memory Impaired Older Adults” . 152

The University of Wisconsin-Milwaukee’s Center for Architecture and Urban

Planning Research-’ Environments for People With Dementia: Design Guide” . 153

The Alzheimer’s Association Legislative Principles and Guidelines for

Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153

The Alzheimer’s Society of Canada-Forthcoming Guidelines . . . . . . . . . . . . . . . . . . . . 153

The Alzheimer’s Coalition of Connecticut-Forthcoming Guidelines . . . . . . . . . . . . . . 153

U.S. Department of Veterans Affairs-Forthcoming Guidelines . . . . . . . . . . . . . . . . . . . 154

Multi-Facility Nursing Home Corporations-Special Care Unit Guidelines . . . . . . . . 154

The Joint Commission on Accreditation of Healthcare Organizations-Draft

Surveyor Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 154

Summary and Implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155

Figure

Figure Page

5-1. Minimum Data Set for Nursing Home Resident Assessment and

Care Screening (MDS) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
Chapter 5

Regulations And Guidelines For Special Care Units

INTRODUCTION

In response to concerns about the diversity of

existing special care units, the lack of standards to

assist families, nursing home surveyors, and others

in evaluating the units, and widespread allegations

that some special care units provide nothing special

for their residents, six States have developed regulations for special care units, and other States are in the

process of doing so. The Alzheimer’s Association

has developed legislative principles for special care

units to assist States in formulating regulations. In

addition, the Alzheimer’s Association and many

other public and private organizations have developed or are in the process of developing guidelines

for special care units.

These regulations and guidelines are or would be

superimposed on the existing regulatory structure

for nursing homes—a complex, multi-layered structure

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that includes six major components:

Federal regulations for Medicare and Medicaid

certification of nursing homes,

State licensing regulations for nursing homes,

State certificate of need regulations for nursing

homes,

other State and local government regulations

that apply to nursing homes,

the survey and certification procedures associated with each of these types of regulations, and

the oversight and advocacy procedures of each

State’s Long-Term Care Ombudsman Program.

In addition to these six components, Federal,

State, and local government regulations for nursing

homes incorporate standards established by private

organizations, such as the National Fire Protection

Association’s Life Safety Codes. Because these

standards are incorporated into government regulations, they become part of the regulatory structure.

Lastly, about 5 percent of nursing homes in the

United States choose to be accredited by a private

organization, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) (214).

These nursing homes are surveyed by JCAHO and

must meet JCAHO standards, as well as Federal,

State, and local government requirements.

The regulatory structure for nursing homes is

currently undergoing massive changes due to the

implementation of the nursing home reform provisions of the 1987 Omnibus Budget Reconciliation

Act (OBRA-87). The provisions of OBRA-87 pertain to the Federal regulations for Medicare and

Medicaid certification of nursing homes and the

survey and certification procedures associated with

those regulations, but the changes mandated by

OBRA-87 are so extensive they affect other components of the regulatory structure as well.

This chapter describes the existing regulatory

structure for nursing homes, including the changes

mandated by OBRA-87. It discusses State regulations and other State policies for special care units.

It also describes the guidelines for special care units

that have been developed or are being developed by

various public and private organizations.

The policy question addressed by the chapter is

whether there should be special regulations for

special care units. On the one hand, the rapid

proliferation of special care units, the lack of

standards to help families, nursing home surveyors,

and others evaluate the units, and the pervasive

allegations that some special care units provide

nothing special for their residents argue for the

development of regulations. On the other hand, the

current lack of agreement about the particular

features that are necessary in a special care unit and

the lack of research-based evidence of the effectiveness of any particular features make it difficult to

determine what the regulations should say beyond

general statements about goals and principles and a

listing of the issues that require special consideration

in the care of nursing home residents with dementia

(e.g., physical design, staff training, security, activity programs, family involvement, and resident

rights).

As this chapter points out, many of the Federal

Medicare and Medicaid regulations mandated by

OBRA-87 are directly relevant to the complaints and

concerns expressed by families and others about the

care provided by most nursing homes for individuals

with dementia. The OBRA regulations rarely mention cognitive impairment or dementia, but the

resident assessment system developed to implement

–133–
134 . Special Care Units for People With Alzheimer’s and Other Dementias

OBRA-87 focuses on the assessment of a resident’s

cognitive status and the identification of problems

and care needs that are common among nursing

home residents with dementia. OBRA regulations

require that residents’ needs be assessed, using this

or a similar assessment system, and that once their

needs are identified, appropriate services be provided to meet those needs.

The regulations for special care units now in effect

in six States were not developed in the context of the

new OBRA regulations. The six States’ regulations

address some common areas, but their requirements

in each of these areas vary, and each State’s

regulations include requirements for features not

included in the other States’ special regulations.

Moreover, some of the requirements are very specific. The inclusion of requirements for particular

features in special care unit regulations implies that

these features are important in the care of nursing

home residents with dementia; that other features

which are not required by the regulations are not

important in the care of these residents; and that the

limited resources of nursing homes should be

expended for the required features rather than other

features. As yet, however, there is no consensus

about the particular features that are necessary in a

special care unit and no evidence from research to

support requirements for any particular features.

OTA concludes from the analysis in this and the

preceding chapters that from a Federal perspective,

the objective of improving nursing home care for

individuals with dementia will be better served at

present by initiatives to develop greater knowledge

and agreement about the particular features that are

important in the care of nursing home residents with

dementia, to determine how those features fit into

the regulatory framework created by OBRA-87, and

to support and monitor the implementation of

OBRA-87 than by the establishment of new Federal

regulations for special care units. Many of the same

considerations that lead to this conclusion would

seem to apply equally to the development of State

regulations for special care units.

THE EXISTING REGULATORY

STRUCTURE FOR NURSING HOMES

Nursing homes are said to be among the most

highly regulated entities in this country (201).

Federal State, and local government regulations

apply to virtually all facets of nursing homes’

physical design and operation. Nursing homes are

inspected at least annually by surveyors or teams of

surveyors who evaluate the facilities’ compliance

with one or more of these types of regulations. Staff

members or volunteers representing the State’s

Long-Term Care Ombudsman Program also visit

nursing homes to investigate and resolve complaints

about resident care. This section describes each of

the components of the regulatory structure.

Federal Regulations for Medicare and

Medicaid Certification of Nursing Homes

The legislation that created the Medicare and

Medicaid programs gave the Federal Government

the authority to establish requirements for nursing

homes that choose to participate in the programs.

Nursing homes must be certified as meeting these

requirements in order to receive Medicare or Medicaid payment for any of their residents. As of 1985,

75 percent of the nursing homes in this country were

certified for Medicare, Medicaid, or both, and these

facilities accounted for 89 percent of all nursing

home beds (467).

The requirements for Medicare and Medicaid

certification of nursing homes have been changed

several times in the past two decades, most recently

as a result of OBRA-87 and amendments to OBRA87 enacted since 1987. Prior to the implementation

of OBRA-87, there were separate certification requirements for skilled nursing facilities (SNFs)

participating in the Medicare and Medicaid programs and intermediate care facilities (ICFs) participating in the Medicaid program. Effective in 1990,

OBRA-87 eliminated the distinction between SNFs

and ICFs for Medicaid purposes. A single set of

requirements for Medicaid certification of nursing

facilities (NFs) is now in effect. Separate but very

similar requirements for Medicare certification of

SNFs are also in effect (456,225).

The current requirements for Medicare and Medicaid certification of nursing homes were first published by the Health Care Financing Administration

(HCFA) in February 1989 (462). The final version of

these requirements was published by HCFA in

September 1991 (463). The requirements address

residents’ rights, residents’ quality of life, resident

assessment, care planning, staff credentials, staff

training, use of physical restraints, use of psychotropic and other medications, quality of care,

nursing, physician, dietary, social work, dental, and
Chapter 5--Regulatiom And Guidelines For Special Care Units ● 135

rehabilitative services, activities, handling of residents’ funds, record-keeping, physical plant, preadmission screening, and other areas.

Many of the requirements are directly relevant to

the complaints and concerns of families and others

about the care provided by most nursing homes for

individuals with dementia. (See table 1-1 inch. 1 for

a list of these complaints and concerns.) The most

relevant of the requirements are quoted here from the

September 1991 version of the “Requirements for

Long-Term Care Facilities” (463).

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“The facility must care for its residents in a

manner and in an environment that promotes

maintenance or enhancement of each residents

quality of life.”

‘‘The facility must promote care for residents in

a manner and in an environment that maintains

or enhances each resident’s dignity and respect

in full recognition of his or her individuality. ’

“The facility must conduct initially and periodically a comprehensive, accurate, standardized,

reproducible assessment of each resident’s

functional capacity.’

“The facility must develop a comprehensive

care plan for each resident that includes measurable objectives and timetables to meet aresident’s medical, nursing, mental, and psychosocial needs that are identified in the comprehensive assessment. ’

“A comprehensive care plan must be prepared

by an interdisciplinary team, that includes the

attending physician, a registered nurse with

responsibility for the resident, and other appropriate staff in disciplines as determined by the

resident’s needs, and to the extent practicable,

the participation of the resident, the resident’s

family or the resident’s legal representative. ’

“Each resident must receive and the facility

must provide the necessary care and services to

attain or maintain the highest practicable physical, mental, and psychosocial well-being, in

accordance with the comprehensive assessment

and plan of care. ’

“Based on the comprehensive assessment of a

resident, the facility must ensure that a resident’s abilities in activities of daily living do

not diminish unless circumstances of the individual’s clinical condition demonstrate that

diminution was unavoidable.’

“Based on the comprehensive assessment of a

resident, the facility must ensure that a resident

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whose assessment did not reveal a mental or

psychosocial adjustment difficulty does not

display a pattern of decreased social interaction

and/or increased withdrawn, angry, or depressive behaviors, unless the resident’s clinical

condition demonstrates that such a pattern was

unavoidable.

“The facility must provide for an ongoing

program of activities designed to meet, in

accordance with the comprehensive assessment, the interests and the physical, mental, and

psychosocial well-being of each resident.”

“If specialized rehabilitative services, such as

but not limited to physical therapy, speechlanguage pathology, occupational therapy, and

health rehabilitative services for mental illness

and mental retardation, are required in the

resident’s comprehensive plan of care, the

facility must:

1. provide the required services, or

2. obtain the required services from an

outside...provider of specialized rehabilitative services. ’

‘‘The resident has the right to be flee from any

physical or chemical restraints imposed for

purposes of discipline or convenience, and not

required to treat the resident’s medical symptoms.’

“Each resident’s drug regimen must be free

from unnecessary drugs. An unnecessary drug

is any drug when used:

1.

2.

3.

4.

5.

6.

. “Based on a comprehensive assessment of a

in excessive dose (including duplicate

drug therapy); or

for excessive duration; or

without adequate monitoring; or

without adequate indications for its use;

or

in the presence of adverse consequences

which indicate the dose should be reduced or discontinued; or

any combinations of the reasons above. ”

resident, the facility must ensure that:

1. residents who have not used antipsychotic drugs are not given these drugs

unless antipsychotic drug therapy is necessary to treat a specific condition and

documented in the clinical record, and
136 ● Special Care Units for People With Alzheimer’s and Other Dementias

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2. residents who use antipsychotic drugs

receive gradual dose reductions and behavioral interventions, unless clinically

contraindicated in an effort to discontinue

these drugs.”

“The facility must provide: a safe, clean,

comfortable, and home-like environment, allowing the resident to use his or her personal

belongings to the extent possible...(and including) adequate and comfortable lighting

levels in all areas; comfortable and safe temperature levels; ..(and) comfortable sound levels. ’

“The resident has the right to retain and use

personal possessions, including some furnishings, and appropriate clothing, as space permits, unless to do so would infringe upon the

rights or health and safety of other residents. ’

“A facility must not use any individual working in the facility as a nurse aide for more than

4 months, on a full-time, temporary, per diem,

or other basis, unless:

1. that individual has completed a training

and competency evaluation program, or a

competency evaluation program approved

by the State, and

2. that individual is competent to provide

nursing and nursing-related services. ’

“The facility must provide regular performance review and regular in-service education

to ensure that individuals used as nurse aides

are competent to perform services as nurse

aides. In-service education must include training for individuals providing nursing and

nursing-related services to residents with cognitive impairments” (463) (emphasis added).

With the exception of the last requirement, none

of these requirements mentions cognitive impairment or dementia. Many of the requirements refer,

however, to residents’ needs as identified by the

required comprehensive assessment. If the comprehensive assessment identifies the needs of residents

with dementia, the regulations require that these

needs be met.

OBRA-87 mandated the development of a set of

core items to be addressed in the required comprehensive assessment. In 1988, HCFA contracted with

a consortium of researchers at Research Triangle

Institute, Hebrew Rehabilitation Center for Aged,

Brown University, and the University of Michigan

to develop a resident assessment system that would

include these core items (308). The resulting assessment system consists of two parts: 1) the Minimum

Data Set, a 5-page resident assessment instrument,

and 2) 18 Resident Assessment Protocols that

provide additional information to assist nursing

home staff members in assessing and developing

care plans for residents with certain problems (309).

States may use this assessment system or develop

one of their own, provided the system they develop

incorporates the core items (308).

The Minimum Data Set emphasizes the assessment of a resident’s cognitive status. Six questions

about cognitive status appear on the first page of the

assessment instrument, immediately after the basic

identifying information about the resident (309).

(Fig. 5-1 shows the first page of the Minimum Data

Set.) Other sections of the assessment instrument

include questions about problems and care needs

that pertain particularly to residents with dementia.

One section asks, for example, whether the resident

needs ‘supervision, including oversight, encouragement, or cueing‘‘ in order to perform activities of

daily living (309). Another section asks about mood

problems (e.g., agitation and withdrawal) and behavioral symptoms (e.g., wandering, verbal and

physical abusiveness, and socially inappropriate or

disruptive behavior). That section also asks whether

the “behavior problem has been addressed by a

clinically developed behavior management program. . .(not including) only physical restraints or

psychotropic medications” (309). Other sections

ask about the resident’s customary routine, the

resident’s involvement and preferences in activities,

the number of medications he or she is taking, the

number of days in the preceding week he or she has

received antipsychotic, antianxiety, or antidepressant

medications, and the frequency of use of physical

restraints.

A one-page form to be used for quarterly review

of a resident’s comprehensive assessment also

emphasizes cognitive status and certain problems

and care needs that pertain particularly to residents

with dementia (309). The form includes questions

about memory, cognitive skills for daily decisionmaking, behavioral symptoms, the number of days

in the preceding week the resident has received

antipsychotic, antianxiety, or antidepressant medications, and the frequency of use of physical

restraints. It also repeats the question about the

resident’s need for ‘‘supervision, including over-
Chapter 5-Regulations And Guidelines For Special Care Units . 137

MINIMUM DATA SET FOR NURSING HOME RESIDENT ASSESSMENT AND CARE SCREENING (MDS)

(Status in last 7 days, unless other time frame indicated)

SECTION A. IDENTIFICATION AND BACKGROUND INFORMATION

I m-m-mm Mend’I Day Year

I Assessment

DATE

(FIrsQ (Mddb Irmnal) (Last) I

m-m-mm

i---

NO

MEDICAID

NO [ff t U-J r

appkibie)

i MEDICAL

RECORD

No

; REASON

FOR

Assessment

CURRENT

PAYMENT

SOURCE(S)

FOR N H

STAY

VA %

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1

2.

I’d

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5.

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138 ● Special Care Units for People With Alzheimer’s and Other Dementias

sight, encouragement, or cueing” in order to perform activities of daily living.

One of the 18 Resident Assessment Protocols is

on dementia. The protocol provides additional

information about dementia to help nursing home

staff members assess the resident accurately and

develop an appropriate care plan (309). Several other

Resident Assessment Protocols address problems

and care needs that are relevant for nursing home

residents with dementia, including delirium, psychosocial problems, behavioral symptoms, activities, psychotropic drug use, and physical restraints.

Compared with other assessment instruments

used in nursing homes in the past, the resident

assessment system developed by the consortium,

including the Minimum Data Set and the Resident

Assessment Protocols, places much greater emphasis on assessment of residents’ cognitive status and

the problems and care needs that are common among

nursing home residents with dementia. Although the

existence of this resident assessment system does

not guarantee that a resident’s needs will be accurately identified or, once identified, that the needs

will be met, the existence of the system certainly

makes both outcomes more likely.

As of January 1992, all States were using the

resident assessment system developed by the consortium (329). Eleven States had added some items

to the Minimum Data Set.

State Licensing Regulations

Each State licenses nursing homes on the basis of

State standards. Although nursing homes that

choose not to participate in the Medicare and

Medicaid programs are not subject to Federal

Medicare and Medicaid regulations, all nursing

homes are subject to State licensing regulations,

including nursing homes that serve only private-pay

residents (225,320).

State licensing regulations vary greatly. Some

States have very complex, stringent, licensing regulations, whereas other States have simpler, less

stringent regulations (94,225,318). In 1984, onefourth of the States were using the Federal Medicaid

regulations for State licensing purposes (318).

Administrative rulings and interpretations of State

licensing regulations are common. These administrative rulings and interpretations become part of a

State’s licensing regulations and generally add to

their complexity.

Five States have changed their licensing regulations to add requirements for special care units, and

one State has established requirements for special

care units as an interpretation of the State’s licensing

requirements. These State regulations and requirements are discussed later in this chapter.

Federal Medicare and Medicaid regulations require that nursing homes have a State license (463).

In effect, therefore, for a given State, the Federal

regulations incorporate that State’s licensing regulations. In the case of States whose requirements are

more stringent or just different than the Federal

requirements in some other way, these different and

more stringent State requirements effectively become part of the Federal requirements.

State Certificate of Need Regulations

State certificate of need laws require explicit State

approval before a nursing home can be built or

expanded. As of 1988, 38 States had such laws

(333). Certificate of need laws are intended to limit

the supply of nursing home beds in a State. It is

generally believed that any additional nursing home

beds will eventually be filled with Medicaid-eligible

residents and ultimately increase State expenditures

for nursing home care (318). By controlling the bed

supply, certificate of need laws are expected to limit

these expenditures.

The process of obtaining a certificate of need is

lengthy and complex in many States. Tables 6-2 and

6-3 in chapter 6 list the steps involved in obtaining

a certificate of need in Massachusetts and New

York. As discussed later in this chapter, at least six

States have altered the process for obtaining a

certificate of need so that applicants who propose to

create special care units receive special consideration.

Other State and Local Government

Regulations That Apply to Nursing Homes

Many State and local government regulations

apply to nursing homes as well as other buildings,

businesses, and health care facilities. These regulations include fire safety codes, zoning codes, building codes, and sanitation codes. Some of these

regulations are incorporated into the requirements

for obtaining a State license or a certificate of need.
Chapter 5-Regulations And Guidelines For Special Care Units ● 139

Survey and Certification Procedures

Nursing homes are inspected regularly by individual surveyors or teams of surveyors who monitor the

facilities’ compliance with each of the types of

regulations discussed thus far in this chapter. Although the regulations are clearly important in

themselves, their impact depends on how they are

interpreted and applied by the surveyors.

Inspection and certification of nursing homes is

primarily a State function (149,225). Each State has

at least one agency--often referred to as a survey

and certification agency—that performs inspections

for Medicare and Medicaid certification of nursing

homes. This agency usually also performs inspections for State licensing purposes, but other State

and local agencies are involved in these inspections

as well. heal building inspectors, fire marshals, and

sanitarians inspect nursing homes in connection

with certification requirements, licensing requirements, and other State and local government regulations that apply to nursing homes. The Department

of Veterans Affairs (VA) also inspects all VA and

nonVA nursing homes in which it places veterans

(289).

The resources allocated by State and local governments to nursing home inspections vary. A 1989

survey of State agencies that perform inspections for

Medicaid certification and/or State licensing found

that 5 States had fewer than one surveyor for every

10 nursing homes, whereas 5 States had 3 or more

surveyors for every 10 nursing homes (149).

OBRA-87 mandated changes in the survey and

certification procedures for Medicare and Medicaid

certification of nursing homes. Coupled with the

new requirements for Medicare and Medicaid certification, the survey procedures mandated by OBRA87 are intended to focus more on residents and the

outcomes of care than on written policies, staff

credentials, physical design features, and other

factors that may affect a facility’s capacity to

provide care (309,462,456). The new survey procedures are also intended to allow survey agencies to

concentrate their attention on nursing homes that

provide substandard care (456). OBRA-87 requires

that each nursing home receive an unannounced

“standard survey” annually. Facilities that are

found in the standard survey to provide substandard

care must receive an “extended survey” within 2

weeks. The extended survey is intended to identify

the facility’s policies and procedures that resulted in

the substandard care.

OBRA-87 makes States responsible for the standard and extended surveys (320,456). Annually, the

Federal Government is required to conduct validation surveys of at least 5 percent of the nursing

homes surveyed by each State in order to determine

the adequacy of the State survey. The Federal

Government is also required to inspect State-owned

nursing homes.

OBRA-87 requires that surveys for Medicare and

Medicaid certification of nursing homes be conducted by a multidisciplinary team, including a

registered nurse (320). Members of the survey team

must meet minimum Federal qualifications, including completion of a federally approved training and

testing program. OBRA-87 also requires that State

survey and certification agencies employ sufficient

staff to investigate complaints and to monitor

facilities that do not meet the requirements or are in

danger of falling out of compliance (320).

One purpose of the new survey procedures is to

reduce the inconsistency of survey procedures in

different States and localities (320). OBRA-87

requires that the standard and extended surveys use

a survey instrument developed, tested, and validated

by the Federal Government. The surveyor training

requirements mentioned above are also intended to

reduce the inconsistency in survey procedures.

In September 1989, HCFA issued interpretive

guidelines to help surveyors apply the new requirements for Medicare and Medicaid certification of

nursing homes (320). The guidelines were revised

following the release in September 1991 of the final

requirements for Medicare and Medicaid certification of nursing homes. In late 1991, HCFA sent the

revised guidelines out for review. The guidelines

prescribe methods to be used in conducting inspections, including procedures for interviewing residents and reviewing resident assessments and care

plans.

State Long-Term Care Ombudsman Programs

The Older Americans Act mandates that every

State have a Long-Term Care Ombudsman Program

to investigate and resolve complaints of residents of

nursing homes and other residential care facilities.

The State programs vary, but most States use both

paid and volunteer staff and have offices at both the
140 ● Special Care Units for People With Alzheimer’s and Other Dementias

State and local level. In 1990, State ombudsman

programs had an average of one paid staff member

at the State or local level for every 3200 nursing

home beds; the range in different States was from

one paid staff member for every 789 beds to one paid

staff member for every 21,500 beds (321). Total

spending for State Long-Term Care Ombudsman

Programs averaged $11.15 per nursing home bed per

year and ranged from $2.09 to $68.05 per bed per

year in different States.

Ombudsmen have the authority to enter a nursing

home at any time to investigate a complaint or

advocate for an individual resident (320). They can

also visit nursing homes to become acquainted with

the residents, monitor their care generally, and

inform them of their rights. A 1990 survey of

long-term care ombudsmen found that only 16

percent reported visiting the nursing homes in their

jurisdiction more than once a month for any of these

purposes (321).

OBRA-87 created a new role for State Long-Term

Care Ombudsman Programs in connection with the

survey process for Medicare and Medicaid certification of nursing homes. The law requires the survey

and certification agency to contact the Long-Term

Care Ombudsman Program to inquire about complaints the ombudsman program may have received

about a facility that is being surveyed (320). The

survey and certification agency is required to invite

the ombudsman to attend the exit conference at the

end of a facility’s survey when the survey findings

are discussed. Lastly, the survey and certification

agency is required to inform the ombudsman if the

facility is not in compliance with any of the

certification requirements.

Summary and Implications

The existing regulatory structure for nursing

homes is extremely complex, and many aspects of

the structure are in flux now because of OBRAmandated changes in the Federal regulations for

Medicare and Medicaid certification of nursing

homes and the survey and certification procedures

associated with those regulations. The OBRAmandated changes are likely to improve the care

received by nursing home residents with dementia.

The resident assessment system developed to implement OBRA-87 focuses much more than assessment

instruments used previously in nursing homes on the

residents’ cognitive status. The assessment system

emphasizes the care needs that are common among

nursing home residents with dementia, and OBRA

regulations require that services be provided to meet

those needs.

Two factors could limit the benefits of OBRArelated changes for individuals with dementia. One

obvious factor is a failure to implement the changes.

Such a failure could occur as the result of a lack of

leadership and political will at the Federal, State, or

local level. It could also occur as a result of

insufficient government funding to implement the

changes, including insufficient Medicare and Medicaid reimbursement for nursing home care, insufficient funding for nurse aide training, and insufficient

funding for survey and certification staff and surveyor training. Some of this funding comes from the

Federal Government, but some comes from States,

so finding problems that affect implementation of

OBRA are likely to vary from State to State.

The second factor that could limit the benefits of

OBRA-related changes for individuals with dementia is lack of knowledge among nursing home

administrators and staff members and nursing home

surveyors about the implications of the new requirements for residents with dementia. With respect to

the OBRA-87 requirements cited earlier in this

chapter, these individuals might ask, for example:

what constitutes good quality of life for a resident

with dementia; what constitutes unavoidable diminution in the resident’s ability to perform activities

of daily living; what activities meet the interests and

needs of nursing home residents with dementia;

what rehabilitative services are needed by nursing

home residents with dementia; what is a safe,

home-like environment, and what are comfortable

levels of sound, lighting, and temperature? Researchbased answers to these and other similar questions

do not exist at present, and certain of the questions

are not amenable to research. There is also disagreement among clinicians about the answers. Yet

answers are needed for effective implementation of

the new requirements.

STATE REGULATIONS AND OTHER

STATE POLICIES FOR SPECIAL

CARE UNITS

As of early 1992, six States had special regulations for special care units. At least five additional

States were developing regulations, and other States

were considering doing so. One State had guidelines
Chapter 5--Regulations And Guidelines For Special Care Units ● 141

for special care units instead of regulations, and one

other State was in the process of developing

guidelines. Other policies for special care units that

have been implemented by a few States include

altering the process for obtaining a certificate of

need so that applicants who propose to establish

special care units receive special consideration,

funding individual special care units, and funding

research on special care units. This section discusses

these State regulations and policies.

Some of the State regulations and policies for

special care units have been mandated by State

legislatures, and others have been put in place by

executive decision. The initiative for the regulations

and other policies has usually come from State

officials and/or State Alzheimer’s disease task

forces, but these individuals and groups were often

responding to concerns raised originally by family

members, special care unit operators, and nursing

home surveyors.

The regulations and policies differ in their primary intent. Some are intended primarily to assure

that special care units are not established and

operated solely for marketing purposes and do, in

fact, provide something special for their residents.

Other regulations and policies are primarily intended to protect the rights of special care unit

residents, particularly those in locked units. Still

other regulations and policies are intended to promote the establishment or evaluation of special care

units.

Some industry representatives believe that States

establish regulations for special care units in part to

raise State revenues (337). States generally charge

nursing homes fees in connection with new construction or extensive remodeling. Consequently,

special care unit regulations that include physical

design requirements are likely to generate fee-based

income for the State.

Six States’ Regulations for Special Care Units

Six States—Iowa, Texas, Colorado, Washington,

Tennessee, and Kansas, have special regulations for

special care units. Iowa created a new licensing

category for special care units, and Texas created a

voluntary certification program. Colorado, Washington, and Tennessee added requirements for special care units to their general licensing requirements

for all nursing homes, and Kansas added an interpretation on special care units to its licensing requirements for all nursing homes.

The regulations developed by these six States are

presented in some detail in this section. OTA’s

intent in presenting these regulations in detail is to

call attention to their diversity and some of the

particular features they require.

Iowa’s Regulations for Special Care Units

Iowa is the only State that currently requires

special care units to have a special license in addition

to the license all nursing homes must have. The

requirements for the special license were developed

in 1988 by a task force appointed by the Iowa

Department of Inspections and Appeals. The department’s intent in creating a special license was to

assure that special care units provide appropriate

care for their residents and are not established only

for marketing purposes (334). When first implemented in November 1988, the special license was

voluntary in the sense that nursing homes had to

obtain a license for a special care unit only if they

were going to advertise they had such a unit. In the

first year, one nursing home applied for a special

license.

At the urging of the State’s Task Force on

Alzheimer’s Disease and Related Disorders, the

licensing requirements were made mandatory, effective in July 1990. Now, nursing homes must have a

special license if they are caring for individuals with

dementia in a distinct part of the facility, with a

separate staff, and if they care only for individuals

with dementia in that part of the facility (334). The

license, which was frost referred to as a license for

‘‘special units for people with Alzheimer’s disease

or related disorders, “ is now referred to as a license

for ‘‘chronic confusion or dementing illness units or

facilities.’ This change is intended to preclude

facilities from arguing that they do not have to obtain

a special license because their residents do not have

a diagnosis of Alzheimer’s disease. As of July 1991,

17 nursing homes had obtained a special license, and

2 more facilities had applied but not yet been

approved for a license.

To obtain a special license, the

require a unit to have:

. a statement of philosophy,

stated in terms of outcomes,

Iowa regulations

with objectives
142 ● Special Care Units for People With Alzheimer’s and Other Dementias

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admission and discharge policies, including a

policy requiring a physician’s approval for a

resident’s admission to the unit,

an interdisciplinary care planning team,

safety policies that specify a method of locking

or otherwise securing the unit and steps to be

taken if a resident is missing from the unit,

policies that explain the programs and services

offered in the unit,

policies that describe the numbers, types, and

qualifications of the unit staff,

policies that assure residents’ right to have

visitors,

quality assurance policies,

preadmission assessment of residents,

staff training, including at least 6 hours of

training for all new staff on nine topics listed in

the regulations and 6 hours of inservice training

annually for all staff,

2 hours of nursing staff time per resident per

day, and a staff member on the unit at all times

(Iowa Administrative Code, Sections 10A.104(5)

and 135c.14).

In October 1990, several physical design specifications were added to the Iowa regulations. They

require a special care unit to have:

. a design such that residents, staff, and visitors

do not pass through the unit to reach other parts

of the facility,

. a locking system that meets the Life Safety

Code and is approved by the fire marshal or an

alternate system for securing the unit,

. a secure outdoor area with nontoxic plants,

. no steps or slopes,

. a separate dining area used only for unit

residents,

. a private area for nurses to prepare resident

records,

. a unisex toilet room that is visible from the

lounge and activity area, and

. a design that minimizes breakable objects

(Iowa Administrative Code, Section 61.13).

Iowa is enforcing the licensing regulations, and

several nursing homes have closed their special care

unit because the unit did not meet the licensing

requirements (169). When officials of the Iowa

Department of Inspections and Appeals become

aware of a unit that is not licensed, they do not

charge the facility with a violation of the regulations,

but they do visit the unit to determine whether it is

a special care unit within the regulatory definition,

and if it is, they notify the facility that a special

license is required (334).

The administrator of one nursing home in Iowa

that has had a special care unit for 5 years told OTA

that although the unit is providing good care for its

residents, it does not meet the licensing requirements (452). She believes some of the State’s

requirements, particularly the physical design specifications added in 1990, are overly rigid and require

features that are not necessary for good care of

residents with dementia.

Texas’ Regulations for Special Care Units

Texas has a voluntary certification program for

special care units that was mandated by the State

legislature in 1987 and became effective in February

1988. Like the early phase of Iowa’s licensing

program, nursing homes in Texas only have to

obtain a license for a special care unit if they are

going to advertise that they have such a unit. The

creation of the voluntary certification program was

intended to encourage the establishment of special

care units. As of September 1991, however, only 8

special care units had been certified, even though the

Department of Health is aware of at least 60 nursing

homes in the State that have a special care unit (1 12).

To be certified, the Texas regulations require a

unit

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to have:

safety measures to prevent residents from

harming themselves or leaving the unit without

supervision,

policies to prevent residents from abusing the

property and rights of other residents,

staff training, including at least 8 hours of

training for all new staff on five topics listed in

the regulations and 4 hours of inservice training

annually for all staff,

specified staff-to-resident ratios for each shift,

staff who are assigned exclusively to the unit,

a social worker to assess the residents on

admission, conduct family support group meetings, and identify and arrange for the use of

community resources,

a specified amount of space per resident in

public areas, including the dining area,

a specified number of showers, bathtubs, toilets, and lavatories per resident,

a nurses’ station with a place to write, a chair,

‘‘task illurination, ’ a telephone or intercom to
Chapter 5--Regulations And Guidelines For Special Care Units . 143

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the main staff station, and a place to store

resident records,

activity and recreational programs tailored to

the individual resident’s needs,

resident access to a secure outdoor area with no

toxic plants,

admission practices that limit admission to

individuals with a diagnosis of Alzheimer’s

disease or a related dementing disorder whose

attending physician has documented the reasons for the individual’s admission to the unit,

patient care practices that provide for residents’

privacy during treatment and personal care,

patient care practices that provide for careful,

time-limited use of restraints and psychotropic

medications,

at least two exits,

latches or other fastening devices for the exit

doors that are easy to release, even in the dark,

and

if the exit doors are locked, the facility must

have a complete sprinkler system or fire alarm

system; the locks must release automatically if

the sprinkler or alarm system is activated or if

there is a power failure; and there may be a

keypad or buttons at the door for routine use by

the staff (Texas Department of Health, Chapter

145, Subchapter B, 145.301-145.304).

At public hearings in October 1989, witnesses

made both positive and negative comments about

Texas’ voluntary certification program (443). The

positive comments focused on the importance of the

training requirements and the value of the certification program in providing initial guidelines for

facilities and preventing facilities from advertising

a special care unit that does not meet minimum

standards. The negative comments focused on the

difficulty of setting standards in a changing field and

the need for revisions to the standards that would

require higher staff levels during some periods of the

day, documentation of staff training, and programs

and policies to address the needs of family members.

Officials of two companies that have several nursing

homes with special care units in Texas told OTA that

the companies consider the State’s requirements for

voluntary certification difficult to meet and costly;

that some of the companies’ facilities are certified

and others are not; and that the companies do not

believe their certified facilities are providing better

care than their uncertified facilities (3,141).

Colorado’s Regulations for Special Care Units

Colorado has special requirements for “secure

units’ which apply to locked special care units as

well as any other locked nursing home units. The

requirements were developed in 1985-1986 by the

Colorado Department of Health. Their primary

intent is to protect individuals who are placed in

locked units (409). The requirements are incorporated in the State’s regulations for all nursing homes,

and no special license or certification is required for

the units.

The Colorado regulations require a‘ ‘secure unit’

to have:

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an admissions evaluation team with specified

members, including a person with mental

health or social work training who is not a

member of the nursing home staff,

admission practices to ensure that individuals

are not placed on the unit unless the evaluation

team finds that: 1) they are dangerous to

themselves or others, or 2) they habitually

wander and would not be able to find their way

back, or 3) they have significant behavioral

problems that seriously disrupt the rights of

other residents, and 4) less restrictive alternatives have been unsuccessful in preventing

harm to themselves or others, and 5) legal

authority for the restrictive placement has been

established,

admission practices to ensure that individuals

are not placed on the unit for punishment or the

convenience of staff and that the unit is the least

restrictive alternative available,

admission practices to ensure that those placed

on the unit because they are dangerous to

themselves or wander habitually are protected

from residents who are dangerous to others or

whose behavior disrupts the rights of others,

documentation of the reasons for residents’

admission to the unit and a physician’s approval of the admission,

written programs to treat the residents it admits,

practices to allow visitors,

sufficient staff to provide for the needs of the

residents,

staff who

needs and

unit,

additional

meet the

are experienced and trained in the

care of the types of residents in the

social work and activities staff to

social, emotional, and recreational
144 . Special Care Units for People With Alzheimer’s and Other Dementias

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The

needs of residents and the social and emotional

needs of residents’ families in coping with the

residents’ illness,

social services and activities that allow regular

interaction with non-confused residents of the

facility and the outside community,

a provision that residents may not be locked

into or out of their rooms,

a specified amount of space per resident in

public areas,

a secure outdoor area, if the facility has an

outdoor area for residents of other units,

practices that meet the fire safety standards of

the 1985 Life Safety Code, and

periodic reevaluation of the residents’ placement (Colorado regulations for Long-Term

Care Facilities, sections 19.1-19.9).

Colorado regulations specify that residents with

Alzheimer’s disease whose condition has stabilized

may remain on the unit if the evaluation team

concludes the “placement is necessary to avoid a

likely recurrence of the condition that was the

purpose of the initial placement on the unit”

(Colorado Regulations for Long-Term Care Facilities, section 19.5.3).

Washington’s Regulations for Special Care Units

Washington State has special requirements for

“protective units for cognitively impaired residents.’ One set of requirements was implemented in

1986 as an interpretation of the State’s licensing

requirements for all nursing homes (500). In 1989,

the interpretation was replaced by a new set of

requirements that are incorporated in the State’s

regulations for all nursing homes. No special license

is required for the units.

As of late 1991, Washington State was reviewing

all its nursing home regulations, including the

requirements for “protective units for cognitively

impaired residents’ (179). Changes in the requirements are a possibility.

The Washington State regulations require a ‘‘protective unit for cognitively impaired residents” to

have:

a dining area that may also serve as a day room

for the unit,

a secure outdoor area with 1) walls or fences of

a specified height, 2) an ambulation area with

firm stable surfaces that are slip-resistant, 3)

exits that release automatically if the fire alarm

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is activated, 4) outdoor furniture, and 5) nontoxic plants,

a staff toilet room,

corridors no less than 10 feet wide in new

construction and 8 feet wide in renovated units,

floors, walls, and ceiling surfaces of contrasting

colors; the surfaces may conceal areas the

residents should not enter,

door thresholds that are one-half inch high or

less,

an electrical signaling system in each room for

staff use in an emergency,

no keyed locks on the exit doors or any door

between a resident and the exit; exits may be

secured by alarms or doors which require

cognitive ability to open or by other methods

that open automatically if the fire alarm is

activated; the releasing devices for the doors

must be labeled with directions, accessible by

residents, and approved for use by the State fire

marshal, and

no use of a public address system except for

emergencies (Washington Administrative Code

248-14-211).

Tennessee’s Regulations for Special Care Units

Tennessee has special requirements for “special

care units for ambulatory patients with Alzheimer’s

disease and related disorders.’ The regulations were

developed on the initiative of the Governor’s Task

Force on Alzheimer’s Disease and went into effect

in March 1991. Nursing homes with a special care

unit must apply to the State’s Board for Licensing

Health Care Facilities to have the unit ‘designated”

as a special care unit. To avoid delays in opening

new special care units, nursing homes that are in

compliance with the State’s general nursing home

requirements may open a special care unit without

waiting for the Board to designate the unit (36).

Eventually, however, all special care units must be

designated by the board.

As of June 1992, 12 special care units had been

designated by the board, and one additional nursing

home had applied for designation of its special care

unit (36). Thus far, no nursing home that has applied

for designation for a special care unit has been turned

down.

The Tennessee regulations require a‘ ‘special care

unit for ambulatory patients with Alzheimer’s disease and related disorders’ to have:
Chapter 5-Regulations And Guidelines For Special Care Units ● 145

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admission practices such that each resident has

a diagnosis made by a physician that identifies

the specific cause of the resident’s dementia

and each resident’s need for admission to the

unit is determined by an interdisciplinary team

that includes a physician who is experienced in

managing individuals with dementia, a social

worker, a nurse, and a relative or other advocate

for the resident,

access to a protected outdoor area,

separate dining/activity areas,

a stated bed capacity that is not exceeded at any

time,

a design such that visitors and staff do not pass

through the unit to reach other parts of the

nursing home,

3.5 hours of direct care per resident per day,

including ,75 hours of direct care provided by

a licensed nurse,

resident care plans that are developed, periodically reviewed, and implemented by an interdisciplinary team that includes a physician who

is experienced in managing individuals with

dementia, a social worker, a nurse, and a

relative or other advocate for the resident,

a 40-hour classroom training program for nurse

aides that is in addition to the 40-hour basic

training program for all nurse aides and covers

the causes, progression, and management of

dementia, including methods of responding to

residents’ behavioral symptoms, alleviating

safety risks, assisting residents with activities

of daily living, and communicating with residents’ families.

procedures for identifying and alleviating jobrelated staff stress,

a family support group that meets at least

quarterly, provides family education and support, and allows for family input into the

operation of the unit, and

if the unit is locked, ‘extraordinary and acceptable fire safety features and polices’ to protect

the residents (Tennessee State Rule 1200-8-6-

.10)

The original intent of the Governor’s Task Force

in initiating the special care unit regulations was that

Medicaid reimbursement would be increased for

special care units that met the specified requirements, but this objective has not been realized. Like

all other States, Tennessee provides no higher

reimbursement for Medicaid-eligible individuals in

special care units than in any other nursing home

unit. In the first year after the regulations went into

effect, the Board for Licensing Health Care Facilities received many inquiries about the designation of

special care units but relatively few applications.

The board’s director believes this is because the

current level of reimbursement for Medicaideligible individuals does not cover the additional

cost a nursing home would incur to comply with the

special care unit requirements.

Kansas’ Regulations for Special Care Units

Kansas has requirements for special care units that

were issued in 1989 as an interpretation of the

State’s licensing regulations for all nursing homes.

As of September 1991, the Kansas Adult Care Home

Program was in the process of revising the licensing

regulations and had proposed that the interpretation

on special care units be included as a requirement in

the revised regulations (267).

The Kansas interpretation requires a special care

unit

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to have:

admission criteria, including a requirement that

the resident have a medical diagnosis and a

physician’s order to be admitted,

a staff training program and documentation that

staff members have completed the program,

a staff member on the unit at all times;

a nurses’ sub-station located so that the corridors are visible from the sub-station,

nurse-call signals that are visible and audible

from the corridors and nurses’ sub-station,

living, dining, activity, and recreational areas

that are accessible to the residents,

resident care plans that identify the problems

that justify the resident’s placement on the unit

and identify interventions that could correct or

compensate for those problems,

methods of securing the unit that are the least

restrictive possible- and comply with all life

safety codes (Kansas Administrative Rules,

28-39-78 (a) (6) and (7) and 28-39-87 (c) and

(e)).

Kansas is enforcing these requirements. At the

beginning of a nursing home inspection, the surveyor asks whether the facility has a special care unit

and then evaluates the identified unit, if any, on the

basis of the requirements of the interpretation in

addition to the general requirements for all nursing

homes (267). No information is available about the
146 . Special Care Units for People With Alzheimer's and Other Dementias

number of special care units identified in this way by

the surveyors. The director of the State’s Adult Care

Home Program told OTA that special care units are

most likely to have trouble with three of the

requirements: 1) the admission criteria, 2) the staff

training, and 3) the resident care plan (267).

States That Are Developing or Considering

Developing Regulations for Special Care Units

State legislatures in four States have mandated the

development of special regulations for special care

units. Two State health departments are developing

regulations for special care units without a prior

legislative mandate, and one State health department

is considering doing so. State Alzheimer’s disease

task forces and other legislatively appointed bodies

in several States have recommended the development of regulations for special care units, and in one

State, the legislature has mandated the appointment

of a committee to determine whether regulations are

needed.

In 1989, the Arkansas legislature passed a bill

requiring the Department of Human Services to

establish a mandatory certification program for

special care units. In 1990, after considering the

issue of regulations for special care units and with

the approval of the bill’s legislative sponsor, the

department decided not to go ahead with the

certification program (147). As of early 1992,

however, the State was reconsidering this issue. One

possibility being considered was the creation of a

new licensing category for special care units.

In 1989, the Nebraska legislature passed a resolution mandating a study of special care unit standards

that would result in recommendations for legislation

to regulate the units (323). In response, the Governor’s Alzheimer’s Disease Task Force formed a

subcommittee to examine this issue and make

recommendations. The subcommittee’s report, released in November 1989, specifies principles,

goals, and objectives for special care units, a list of

recommended policies and procedures that are very

similar to Iowa’s requirements for a special care unit

license, and a proposed training program for special

care unit staff members. The subcommittee recommended that the Nebraska Department of Health

develop regulations based on the content of this

report and the Iowa licensing requirements, The

subcommittee concluded that required staffing ratios for special care units should be based on ‘acuity

ratings of the patients” and that Medicaid reimbursement for residents of special care units should

also be based on “acuity ratings” and on the cost to

the nursing home of complying with the State

requirements for special care units, once developed

(323). As of September 1991, the Department of

Health was still working on draft regulations (447).

In 1991, the Oregon legislature passed a bill

requiring nursing homes and residential care facilities that have a special care unit to register with a

State agency, the Senior and Disabled Services

Division, by Oct. 1, 1991 (335). Twenty-four

facilities registered by that date, including 20

nursing homes and 4 residential care facilities (126).

The Oregon legislation also requires that by June 1,

1993, facilities with a special care unit must have a

special ‘‘endorsement’ on their general license. To

obtain the endorsement, the special care units will

have to meet requirements in three areas: “1) care

planning, including physical design, staffing, staff

training, safety, egress control, individual care

planning, admission policy, family involvement,

therapeutic activities, and social services; 2) continuity of basic care requirements; and 3) marketing

and advertising of the availability of and services

from Alzheimer’s care units” (335). As of early

1992, the Senior and Disabled Services Division was

developing the requirements for the endorsement.

An advisory committee that includes three Alzheimer’s advocates, three industry representatives,

and one official of an area agency on aging had been

appointed to assist the division in developing the

requirements(126).

In 1991, the North Carolina legislature passed a

bill requiring the State Medical Care Commission to

develop standards for special care units in nursing

homes and requiring the State Social Services

Commission to develop standards for special care

units in residential care facilities. Both sets of

standards are to address “the type of care provided

in a special care unit, the type of resident who can be

served on the unit, the ratio of residents to staff

members, and the requirements for the training of

staff members’ (33 1). As of early 1992, both sets of

standards had been drafted and were in the approval

process (71). As a part of that process, the State

legislature asked for a cost impact statement to

determine the cost implications of the standards.

The New Jersey Department of Health is developing regulations for special care units (161). The
Chapter 5--Regulations And Guidelines For Special Care Units ● 147

regulations will require special care units to meet 65

percent of the requirements if they are going to

advertise as a special care unit.

The Oklahoma Department of Health is also

developing regulations for special care units, primarily in response to recommendations of the State

Task Force on Alzheimer’s Disease and Related

Disorders (326). The regulations will require special

care units to have a special license in addition to the

license all nursing homes must have.

The New Mexico Department of Health is considering the development of regulations for special care

units (499). The department intends to work with the

Alzheimer’s Association and the School of Nursing

at the University of New Mexico on this project.

In the past few years, State Alzheimer’s disease

task forces in at least two additional States—

Arizona, and Indiana-have recommended the development of regulations for special care units

(14,65,203). In its 1989 report, the Arizona Advisory

Committee on Alzheimer’s Disease and Related

Disorders cited complaints from many families

about ‘difficult and stressful encounters with poorly

run homes’ and about the lack of standards and

regulatory guidance in the selection of residential

care homes (14). The committee recommended that

the Arizona Department of Health Services be

authorized “to develop guidelines, set standards,

and regulate specific Alzheimer’s patient care units

in nursing homes that are presented to the public as

providing specialized care” (14). Following the

release of its 1989 report, the committee developed

draft standards. As of early 1992, the State had not

yet agreed to enforce the standards, and the committee was seeking ways to obtain voluntary compliance (432).

In Indiana, the State’s Family and Social Services

Administration contracted with the Alzheimer’s

Association of Greater Indianapolis to develop

standards for special care units and to make a

recommendation about whether the State should

institute either a voluntary or a mandatory certification program for special care units (428). The

contract ran from January 1992 to June 1992.

Although the standards proposed by the Alzheimer’s

Association may eventually be the basis for regulation, the State has not yet committed itself to

establishing regulations.

In California, some members of the State’s

Alzheimer’s Advisory Committee drafted guidelines for special care units but concluded that it

would take several years to get the guidelines

incorporated into the State’s nursing home regulations with or without legislation (484). As a result,

the committee is working with California’s nursing

home associations and individual nursing home

operators toward eventual voluntary implementation of the guidelines. As of July 1992 the draft

guidelines were being reviewed by the associations,

consumers, policymakers, and others (255).

In Rhode Island, in early 1992, the Long-Term

Care Coordinating Committee, a legislatively appointed body, approved draft legislation to create

standards for special care units (284). The draft

legislation has been sent to the State legislature.

Lastly, in Virginia, in March 1992, the State

legislature passed a resolution requiring the establishment of a committee to determine whether the

State should have regulations for special care units.

The Virginia Department of Mental Health has

appointed the committee.

States That Have Developed or Are

Developing Guidelines for Special Care

Units or for the Care of People With

Dementia in All Nursing Homes

New Hampshire has guidelines for special care

units, and Missouri is developing such guidelines.

The New Hampshire guidelines are published in an

8-page booklet that has one section for families who

are trying to evaluate special care units and another

section for nursing home operators who are interested in establishing a special care unit (325). By

providing information for families and nursing home

operators in the same publication, the New Hampshire booklet directs the attention of the nursing

home operators to what families are likely to be

looking for in a special care unit.

The New Hampshire State agency that produced

the booklet chose to publish guidelines rather than

regulations because of an awareness of the diversity

of opinions about special care units both inside and

outside the State government (216). The agency has

not ruled out the possibility of developing regulations in the future.

In 1990, the Missouri Division of Aging appointed a special care unit committee to develop
148 . Special Care Units for People With Alzheimer’s and Other Dementias

guidelines (153). One reason Missouri chose to

develop guidelines rather than regulations was a

belief in the State that nursing homes would expect

regulations to be accompanied by increased reimbursement for special care units and that the

development of guidelines would not create that

expectation.

Massachusetts took a different approach than

other States in its ‘‘Guidelines for Care of Patients

With Alzheimer’s Disease and Related Disorders in

Massachusetts Long-Term Care Facilities. ” These

guidelines, published in 1988, pertain to the care of

individuals with dementia in any nursing home unit

(288). As of late 1991, anew set of guidelines for the

care of individuals with dementia in nonspecialized

nursing home units was being reviewed (362). At the

same time, the Eastern Massachusetts Chapter of the

Alzheimer’s Association, in cooperation with the

Massachusetts Department of Health, was drafting a

separate set of guidelines for the care of individuals

with dementia in special care units.

In its 1991 report, the Maryland Coordinating

Council on Alzheimer’s Disease and Related Disorders recommended an approach similar to the 1988

Massachusetts guidelines (286). The Council recommended that the State work with industry and

advocacy groups to develop guidelines that would

apply to the care of individuals with dementia in any

nursing home unit. The Council also recommended

that the State collect information about special care

units. It recommended against the development of

regulations, saying, “States and advocacy groups

which have attempted to develop regulations or

detailed guidelines for special care units have not

been particularly successful” (286).

States That Have Certificate of Need

Exceptions for Special Care Units

As noted earlier, certificate of need laws are

intended to limit the supply of nursing home beds in

a State. At least six States--Georgia, Kentucky,

Michigan, Mississippi, New Jersey, and Ohiohave altered the process for obtaining a certificate of

need, either on an ongoing or a one-time basis, so

that applicants who propose to create special care

units or special nursing homes for people with

dementia receive special consideration. To OTA’s

knowledge, only two of these States, Kentucky and

Michigan, have special requirements for the units or

facilities developed with a certificate of need exception (35,155,161,172). This lack of requirements

created consternation in at least one of the other

States when State surveyors were preparing for their

annual inspection of a facility that had created a

special care unit with a certificate of need exception,

and the surveyors wanted to know what to look for

when they inspected the unit (155).

In Kentucky, the legislature created a time-limited

exception to the State’s certificate of need law to

allow the establishment of “free-standing facilities

limited to the care of patients with Alzheimer’s or

related disorders’ (172). The facilities had to be

approved by July 1991 and have to meet special

licensing requirements. Interestingly, the licensing

requirements for free-standing Alzheimer’s facilities do not apply to special care units, and freestanding Alzheimer’s facilities do not have to meet

the State’s regulatory requirements for all nursing

homes. As of the cutoff time in July 1991, one

facility had obtained a license, and another facility

was in the process of doing so (343).

Effective in 1989, the Michigan Certificate of

Need Commission set aside 200 beds from the total

number of allowable new nursing home beds in the

State to be used for special care units. The Commission determined that special care units created

through this certificate of need exception must:

admit only patients who require long-term care

and have been appropriately classified as having a score below a given level on the Global

Deterioration Scale, a widely used assessment

instrument,

participate in the State Alzheimer’s registry,

operate for a minimum of 5 years and conduct

and participate in research programs approved

by the department to evaluate the effectiveness

of special care units and to study the relationship between the needs of Alzheimer’s patients

and the needs of other nursing home residents,

be affiliated with a research facility or program,

be attached or geographically adjacent to a

licensed nursing home,

have no more than 20 beds,

have direct access to a secure indoor or outdoor

area for unsupervised activity,

have a separate dining room for use only by

residents of the unit,

have a physical environment designed to minimize noise and light reflections, and

have trained staff (304).
Chapter 5-Regulations And Guidelines For Special Care Units ● 149

As of March 1991, the first five applicants for

certificate of need exceptions had been disapproved

because they did not submit a research protocol or

were not affiliated with a research program (514).

Other State Policies for Special Care Units

In addition to regulations, guidelines, and certificate of need exceptions, several States have provided finding for individual special care units or for

training staff members in special care units. In 1987,

Massachusetts initiated its “Alzheimer’s Unit Pilot

Program” which has provided funding for eight

nursing homes to create special care units. Connecticut has provided funding for a 120-bed nursing

home and research center devoted to the care of

individuals with Alzheimer’s disease. Florida has

provided funding for a long-term care facility and

research center for individuals with Alzheimer’s

disease. Each of these projects is intended to

develop, demonstrate, and evaluate methods of

specialized dementia care.1

California has funded at least two studies of

special care units. One study compared two nursing

home special care units, two nonspecialized nursing

home units, and two specialized programs for

individuals with dementia in board and care facilities (256). The results of this study are discussed in

chapter 3. A second study is comparing various

methods of preventing individuals with dementia

from wandering away from a care setting. The study

is evaluating the effectiveness of door alarms and

wrist bands vs. a locked perimeter in achieving this

purpose (484).

Beginning in 1991, Michigan has provided funding to the Alzheimer’s Care and Training Center, a

special care unit in Ann Arbor, Michigan, to support

research on the care of individuals with dementia

and to provide training about dementia for staff of

the State’s community mental health centers (384).

Rhode Island has provided funding for the past six

years for a training program that has been instrumental in establishing several special care units and

specialized adult day centers (284).

Summary and Implications

Special care units are clearly an area of policy

interest in many States. As discussed in the preceding sections, there are now:

six States with regulations for special care units

(IA,TX,CO,WA,TN,KS);

five States in the process of developing regulations (NC,NE,NJ,OK,OR);

one additional State that has passed legislation

to mandate the development of regulations

(AR);

three additional States in which the Stateappointed Alzheimer’s task force or long-term

care advisory council has recommended the

development of regulations (AZ,IN,RI);

one State that has passed legislation to establish

a committee to study the need for regulations

(VA);

one State with guidelines for special care units

(NH);

one State that is developing guidelines for

special care units (MO);

one State with guidelines for the care of

individuals with dementia in any nursing home

unit (MA);

one State in which the Alzheimer’s task force

has recommended the development of guidelines for the care of individuals with dementia

that would apply to any nursing home unit

(MD);

six States that have altered the process for

obtaining a certificate of need to encourage the

establishment of special care units

(GA,KY,MI,MS,NJ,OH); and

six States that have provided funding for

individual special care-units, for training in

special care units, or for research on special

care units (MA,CA,CT,FL,MI,RI).

These figures and the discussion in the preceding

sections reflect information available to OTA as of

early 1992. The figures indicate that a total of 28

States have, are in the process of developing, or are

considering developing policies of some kind for

special care units. (Five States are included twice in

the list.)

1 Several other States, e.g., Illinois and New York, have provided funding for nursing homes to develop improved methods of caring for residents

with dementia in nonspecialized units. The New York Medicaid program pays an additional $4 a day for residents with Alzheimer’s disease in any nursing

home (201). Maine and Oregon subsidize the care of some residents with dementia in specialized board and care facilities (303,501).
150 ● Special Care Units for People With Alzheimer’s and Other Dementias

State policies for special care units are changing

rapidly. Interest in the development of regulations

for special care units is clearly growing. In some

States, this interest is unopposed. In other States,

such as Illinois, Michigan, Ohio, and Wisconsin, this

issue is controversial, and some groups strongly

oppose the development of regulations. Anecdotal

evidence suggests that in a few States, regulatory

proposals developed by Alzheimer’s advocates have

been opposed by other Alzheimer’s advocates or

nursing home industry representatives who have

different ideas about whether there should be

regulations, and if so, what the regulations should

say.

Thus far, State policies for special care units have

been developed without regard for the nursing home

reform provisions of OBRA-87. Some of the State

regulations for special care units were developed

before OBRA-87 was passed, and many of the

regulations were developed before the publication in

February 1989 of the first version of the requirements to implement OBRA-87. It is surprising,

however, that current discussion and debate about

regulations and guidelines for special care units is

proceeding with so little reference to the OBRA

requirements. One exception to this observation is

the 1991 report of the Maryland Coordinating

Council on Alzheimer’s Disease and Related Disorders. The report notes the likelihood that OBRA

requirements will improve the care of people with

dementia in nursing homes and stresses the importance for Alzheimer’s advocates of monitoring

facilities’ compliance with the requirements (286).

Regulations for special care units now in effect in

Iowa, Texas, Colorado, Washington, Tennessee, and

Kansas have both similarities and differences. Each

State’s regulations address several common areas,

e.g., admission criteria, security, staff training, and

some aspects of physical design, but their requirements in each of these areas differ. Moreover, each

State’s regulations include requirements for features

not addressed in other States’ special regulations,

e.g., Iowa’s requirement that the unit and its outdoor

area have no steps or slopes, Washington’s requirement that floors, walls, and ceilings have surfaces of

contrasting colors, and Colorado’s requirement that

residents may not be locked into or out of their

rooms.

What is and is not included in these regulations is

significant because of the implication that features

required by the regulations are particularly important in the care of nursing home residents with

dementia and that other features not addressed by the

regulations are not particularly important for these

residents. The inclusion of certain features suggests

that nursing home resources should be expended for

those features and not others.

Many of the requirements for special care units in

the six States probably are not more important in the

care of nursing home residents with dementia than

other nursing home residents, e.g., an interdisciplinary care planning team (IA,TN); policies that

explain the programs and services offered in the unit

(IA); a social worker to assess residents on admission, conduct family support group meetings, and

identify and arrange for the use of community

resources (TX); activity and recreational programs

tailored to individual residents’ needs (TX); a staff

member on the unit at all times (KS); and nurse-call

signals that are visible and audible from the corridors and the nurses’ sub-station (KS).

Some of the requirements in the six States’

regulations duplicate provisions of OBRA-87 that

apply to all nursing home residents. For example,

Iowa and Colorado require that special care units

have policies to allow residents to have visitors. The

OBRA requirement states, “The resident has the

right and the facility must provide immediate access

to any resident. . subject to the resident’s right to

deny or withdraw consent at any time, by immediate

family or other relatives of the residents. . and by

others who are visiting with the consent of the

resident” (463).

In general, the six States’ requirements focus

more on staff training and physical design features

and less on activity programs and programs to

involve and support residents’ families. Although

there is no evidence from research that any one of

these features is more likely than the others to

produce positive outcomes, some dementia experts

would probably favor a greater emphasis on activity

programs and family support programs than exists in

the six States’ requirements.

Notably absent from the requirements of five of

the six States is any mention of the role of

physicians, except in approving residents’ admission

to the unit. Likewise, except for the Colorado

regulations, mental health expertise and training are

not mentioned, and their inclusion in the Colorado

regulations may simply reflect the fact that these
Chapter 5--Regulations And Guidelines For Special Care Units . 151

regulations pertain to locked units for psychiatric

patients as well as locked units for individuals with

dementia. Requirements for ongoing physicians’

involvement with residents appear in other sections

of the States’ nursing home regulations and in the

Federal regulations for Medicare and Medicaid certification of nursing homes, and there may

also be requirements for involving individuals with

mental health training in other sections of the States

nursing home regulations. Omission of these features in the special care unit requirements suggests,

nevertheless, that they are less important in the care

of nursing home residents with dementia than the

features that are included.

The overall impact of State regulations on the

growth of special care units is unclear. Anecdotal

evidence suggests that some of the six States’

regulatory requirements may discourage the growth

of special care units, primarily because of the cost of

complying with the requirements. The Hillhaven

Corp. estimates that complying with Washington

State’s requirements increased the remodeling cost

for a special care unit that opened in one of their

facilities in 1991, from $69,000 to $118,000 (261).

As a result, the corporation canceled plans for a

special care unit in another facility in the State.

In considering the impact of State regulations on

the growth of special care units, it is interesting to

note that despite the growing number of special care

units in the United States and the growing interest in

regulations for special care units in many States, as

of early 1992, there were fewer than 60 special care

units nationwide that were specially licensed, certified, designated, or registered (17 to 19 units in

Iowa, 8 units in Texas, 12 units in Tennessee, and 20

units in Oregon). OTA is not aware of any research

that compares these licensed, certified, designated,

or registered units to other special care units.

SPECIAL CARE UNIT

GUIDELINES DEVELOPED BY

OTHER PUBLIC AND PRIVATE

ORGANIZATIONS

In addition to States, several other public and

private organizations have developed or are in the

process of developing guidelines for special care

units. Six of these organizations-the Alzheimer’s

Association, the American Association of Homes

for the Aging, the Massachusetts Alzheimer’s Disease Research Center, the National Institute on

Aging’s Alzheimer’s Disease Education and Referral Center, the University of South Florida’s Suncoast Gerontology Center, and the University of

Wisconsin-Milwaukee’s Center for Architecture and

Urban Planning Research-have completed guideline documents. The Alzheimer’s Association also

has legislative principles for special care units. The

Alzheimer’s Society of Canada, the Alzheimer’s

Coalition of Connecticut, and the U.S. Department

of Veterans Affairs are developing guidelines for

special care units. Some multi-facility nursing home

corporations have formal guidelines or standards for

their special care units. Lastly, the Joint Commission

on Accreditation of Healthcare Organizations, a

private organization that offers voluntary accreditation for nursing homes, is developing guidelines to

assist its surveyors in evaluating special care units in

the nursing homes it accredits. This section briefly

describes each of these guideline documents and

efforts.

Some of the guidelines developed by these

organizations are intended as a basis for government

regulations, but most are not. None of the six

completed guideline documents is intended as a

basis for regulations. It is OTA’s impression that

obtaining agreement among experts in dementia care

about the features that should be required in a special

care unit is more difficult than some organizations

anticipate. As a result, organizations that begin with

the intention of developing standards that could be

used for regulatory purposes sometimes conclude

later on that there is insufficient agreement among

experts to support such standards and decide to

develop guidelines instead.

The American Association of Homes for the

Aging— “Best Practices for Special Care

Programs for Persons With Alzheimer’s

Disease or a Related Disorder”

In 1988, the Task Force on Alzheimer’s Disease

of the American Association of Homes for the Aging

completed its ‘Best Practices’ document (10).2 The

document is intended to provide guidelines for

exemplary special care programs and to help nursing

2 TO 0~*~ ~Owle@., me ~encm A~~OCiatiOn of H~mes for the Aging’s ‘ ‘Best ~wtiws” document~s not been published. It is available from

the Association however.
152 ● Special Care Units for People With Alzheimer’s and Other Dementias

home operators and others distinguish specialized

dementia care from standard practice. The document

points out that, ‘‘although many of the best practices

appear at first to be the standards of any quality

program, when taken as a whole the best practices

define what is special about dementia care’ (10). It

also emphasizes that little research has been conducted on specialized dementia care, that the “Best

Practices” guidelines are based on clinical experience, and that with further experience and research,

the guidelines will be validated, improved upon, and

expanded. The document is not intended to be used

for regulatory purposes.

The 22-page “Best Practices” document addresses seven areas: commitment, philosophy of

care, therapeutic program, physical design, specialized staff, communications program, and education

and research (10). For each of these areas, a general

statement of the best practice is given; the characteristics or components of the best practice are listed;

and the desirable outcomes in that area are described.

The Massachusetts Alzheimer’s Disease

Research Center—“Blueprint for a

Specialized Alzheimer’s Disease Nursing Home”

In 1989, with funding from the National Institute

on Aging and the Administration on Aging, the

Massachusetts Alzheimer’s Disease Research Center held a 2-day workshop to develop a plan for a

specialized Alzheimer’s disease nursing home. The

workshop participants tried to define what should be

special about specialized care for individuals with

dementia, what works for these patients, and which

patients it works for. The resulting document,

released in 1990, provides general conclusions and

recommendations but emphasizes the need for

rigorous research on specialized dementia care

(287). It is not intended to be used for regulatory

purposes.

The 20-page “Blueprint” document addresses

three areas: policy planning, patient care programs,

and architectural design (287). For each of these

areas, a series of interrelated recommendations are

made based on the workshop discussion and later

review and revisions by the workshop participants.

The Alzheimer’s Disease Education and

Referral Center—“Standards for Care for

Dementia Patients in Special Care Units”

In 1991, the Alzheimer’s Disease Education and

Referral Center completed its guidelines for special

care units (6). The center, which is funded by the

National Institute on Aging, is a clearinghouse for

information about Alzheimer’s disease for professionals, patients, families, and the general public.

The “Standards” document is available to anyone

who requests it. Despite its title, the document does

not set standards. It discusses the pros and cons of

developing standards for special care units, points

out the lack of information about many aspects of

specialized care for individuals with dementia, and

emphasizes the need for research on the costs and

effectiveness of special care units. The document is

not intended to be used for regulatory purposes.

The ‘Standards’ document addresses seven areas:

admission, environment, activities, staffing, training, expected impacts, and research issues (6). For

each of these areas, a brief summary of current

thinking is given.

The University of South Florida’s Suncoast

Gerontology Center—“Draft Guidelines for

Dementia Specific Care Units (DSCUs) for

Memory Impaired Older Adults”

In 1991, researchers from the Suncoast Gerontology Center published the findings of a study of 13

special care units in west central Florida (64). As

discussed in chapter 3, the researchers used the study

findings to create a typology of ‘‘minimally specific,

moderately specific, and highly specific” units. On

the basis of the study findings and the typology, the

researchers developed guidelines for special care

units (63). The guidelines are not intended to be used

for regulatory purposes.

The 19-page “Draft Guidelines” document addresses ten areas: goals and philosophy, target

population, admission and discharge criteria, resident assessment, physical environment, activity

programs, unit size and staffing, staff training,

family involvement, and ongoing evaluation (63).

For each of these areas, a theoretical rationale and

several specific guidelines are given.
Chapter 5-Regulations And Guidelines For Special Care Units ● 153

The University of Wisconsin-Milwaukee

Center for Architecture and Urban Planning

Research— “Environments for People With

Dementia: Design Guide”

In 1987, the American Institute of Architects and

the Association of Collegiate Schools of Architecture contracted with the Center for Architecture and

Urban Planning Research at the University of

Wisconsin-Milwaukee for a project to develop

environmental design guidelines for special care

units and other specialized settings for people with

dementia. The project resulted in an annotated

bibliography (363), a book of facility case studies

(96), a regulatory analysis (94), and a design guide

(95). The 97-page design guide discusses particular

needs of persons with dementia, related therapeutic

goals for the physical environment, and design

principles for achieving those goals. It includes

facility case examples and illustrations.

The Alzheimer’s Association-Legislative

Principles and “Guidelines for Dignity”

In 1988, the Alzheimer’s Association published a

13-page booklet to help families of individuals with

dementia evaluate special care units (276). The

booklet provides information about specialized dementia care and advises family members to visit a

unit and to observe certain aspects of the physical

environment, unit staffing, and resident care before

deciding to place their relative with dementia in the

unit.

As the number of special care units has increased,

the association’s national office and many of its

more than 200 chapters nationwide have received an

increasing number of requests from family members

and others for information and advice about special

care units. Nursing home operators contact Alzheimer’s Association chapters for help in establishing a special care unit, and some chapters are

providing formal or informal consultations to such

facilities (114,231). State officials also contact the

national office and the chapters for assistance in

developing State relations for special care units.

For these reasons, and because of concerns about

special care units that are apparently established

only for marketing purposes and provide nothing

special for their residents, the association has

developed legislative principles for special care

units (4).

The association’s legislative principles are intended to direct legislators’ and regulators’ attention

to the primary areas a State should include when

drafting special care unit legislation or regulations.

The 11 areas cited in the association’ s principles are:

1) statement of mission, 2) involvement of family

members, 3) plan of care, 4) therapeutic programs,

5) residents’ rights, 6) environment, 7) safety, 8)

staffing patterns and training, 9) cost of care, 10)

quality assurance, and 11) enforcement (4). The

legislative principles recommend that States involve

providers, consumers, ombudsmen, activities and

occupational therapists, environmental design specialists, fire and safety officials, and licensure and

survey officials in drafting specific standards in each

of these areas.

In July 1992, the association released “Guidelines for Dignity: Goals of Specialized Alzheimer/

Dementia Care in Residential Settings.” The 41-

page “Guidelines” document discusses eight goals

and guidelines for achieving the goals. The document is not intended to be used for regulatory

purposes.

The Alzheimer’s Society of Canada—

Forthcoming Guidelines

In 1990, the Alzheimer’s Society of Canada, a

private voluntary association, received a $500,000

grant from the Canadian Government for a 3-year

project to develop guidelines for the care of individuals with Alzheimer’s disease in a variety of

settings, including special care units (7,313). In the

first year of the grant, a literature review was

conducted; Alzheimer’s Society staff members visited various care settings; and a questionnaire was

sent out to 15,000 family caregivers. In 1991, draft

guidelines were developed by the society’s staff

with the assistance of an advisory committee (401).

The guidelines, which were circulated for outside

review in early 1992, address 11 areas: involvement

in decisionmaking, assessment, staffing, programs

and activities, training and education for caregivers,

support for caregivers, physical and chemical restraints, preventing and responding to abuse, environmental design, and transportation. The society

intends to publish two documents based on the

guidelines--one document intended primarily for

families and one intended primarily for government

and provider agencies.
154 ● Special Care Units for People With Alzheimer’s and Other Dementias

The Alzheimer’s Coalition of Connecticut—

Forthcoming Guidelines

The Alzheimer’s Coalition of Connecticut, a

private nonprofit organization that was formed after

the expiration of the Governor’s Task Force on

Alzheimer’s Disease, has developed a draft document that describes the important features of a

special care unit. Although State officials have been

involved in the development of the document, it is

not intended as the basis for State regulations (512).

U.S. Department of Veterans Affairs—

Forthcoming Guidelines

As discussed in chapter 3, a 1989 survey by the

U.S. Department of Veterans Affairs (VA) identified

special care units at 31 of the 172 VA medical

centers nationwide. In 1991, the VA conducted site

visits to 13 of the special care units and telephone

interviews with staff of many of the other units.

Partly on the basis of these site visits and interviews,

the VA is developing guidelines for “Specialized

Alzheimer’s/Dementia Units” at VA medical centers (103). The guidelines describe three types of

units-’ diagnostic,’ “behavioral management,”

and ‘‘long-term care’ units. The guidelines discuss

the goals and objectives of the units, the types of

residents served, unit size and location, staffing,

space and environmental factors, program evaluation, and quality assurance.

Multi-facility Nursing Home Corporations—

Special Care Unit Guidelines

Some multi-facility nursing home corporations

have guidelines for special care units in the nursing

homes they own, Hillhaven Corp., which had 56

nursing homes with special care units in late 1990,

has an extensive policy and procedures manual for

the units (187). The manual was first developed in

1982 and was updated in 1984 and 1988 (337). It

delineates the philosophy and treatment modalities

of the units, their admission and discharge criteria

and procedures, family services, use of restraints,

staff training, and other features. The manual includes resident assessment instruments, guidelines

for running a family support group, and a quality

assurance checklist.

Unicare Health Facilities, which had 15 nursing

homes with special care units in late 1990, also has

a manual for its units, called ‘‘Lamplighter Units”

(281). The manual describes the care needs of

nursing home residents with Alzheimer’s disease

and the philosophy, admission criteria, assessment

procedures, staffing, and care methods of the company’s special care units. The manual includes a

resident assessment instrument. Other multi-facility

nursing home corporations that have facilities with

special care units may also have guidelines for the

units.

The Joint Commission on Accreditation of

Healthcare Organizations—

Draft Surveyor Guidelines

Since 1989, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has been

working on guidelines to assist its surveyors in

evaluating special care units in the facilities it

accredits. As noted earlier, JCAHO is a private

organization that currently accredits about 1000

nursing homes in the United States (214). JCAHO’s

effort to develop guidelines evolved from concerns

and questions raised by its surveyors about how to

evaluate the increasing number of special care units

they were seeing in nursing homes accredited by the

commission (434).

JCAHO’s surveyor guidelines, currently out for

review in a fourth draft, are based on the commission’s standards for all nursing homes (213,435). No

changes have been made to the basic standards.

Instead, statements have been added next to many of

the standards to explain the implications of the

standard for the care of residents with dementia and

to describe the process surveyors should follow in

evaluating and scoring the special care unit on that

standard.

The 152-page fourth draft of the surveyor guidelines is much longer than the other guideline

documents discussed in this section. It provides

what is, in effect, a detailed answer to the question,

“What constitutes appropriate care for nursing

home residents with dementia?” Some commentators will undoubtedly disagree with some of its

components, and certain of the components probably apply as much to nondemented as demented

nursing home residents. There are also instances in

which the guidelines tell surveyors to determine

whether appropriate or proper care has been given,

leaving open the question of what appropriate or

proper care is; the frequency of these instances has

decreased, however, in each successive draft of the
Chapter 5-Regulations And Guidelines For Special Care Units . 155

document. The guidelines are informative and thoughtprovoking at the least, and the commission is to be

credited with creating comprehensive surveyor guidelines that fit within the broader context of its

standards for all nursing homes.

JCAHO intends to pilot test the surveyor guidelines in the summer 1992 in six special care units in

the Chicago area (435). Using the guidelines, two

JCAHO surveyors will inspect the six units. Within

2 days, two representatives of the Alzheimer’s

Association will visit the same units. The surveyors’

findings and the observations of the Alzheimer’s

Association representatives will be compared to

determine whether the guidelines identify the problems that concern consumers.

Summary and Implications

The completed guideline documents discussed in

the preceding sections are intended to educate and

inform. They identify areas that require special

consideration in the care of nursing home residents

with dementia, but unlike the State regulations

discussed earlier in the chapter, the guideline

documents generally do not prescribe particular

features for special care units. The JCAHO draft

surveyor guidelines differ from the other guideline

documents in that they do prescribe many detailed

features for special care units, but the JCAHO

guidelines are also intended primarily to educate and

inform surveyors and to identify areas of special

consideration in the care of residents with dementia.

The areas of special concern identified in the

guideline documents are: activity programs, admission and discharge criteria, conditions of participation, cost and reimbursement, enforcement, family

involvement, philosophy and goals, physical environment, physical restraints and psychotropic medications, plan of care, policies and procedures,

quality assurance, research, resident assessment,

resident rights, safety egress control, specialized

services (e.g., physician, nursing, social work, and

dietary services), and staffing. These areas of

concern are not necessarily mutually exclusive, and

some are addressed in only one of the guideline

documents. Nevertheless, there appears to be some

agreement at present about the areas of concern. The

State regulations discussed earlier fit conceptually

within the same areas of concern.

Having agreement about areas of concern is

helpful in organizing a discussion about particular

features that might be desirable or required in special

care units. On the other hand, agreement about areas

of concern is not the same as agreement about

particular features. For example, agreement that

activity programs and physical environment are

areas of concern does not constitute agreement about

what the activity programs or physical design

features should be. It is OTA’s observation that in

discussions about guidelines and regulations for

special care units, agreement about areas of concern

often masks considerable disagreement about particular features of the units and gives a misleading

impression that there is consensus about at least

some particular features that are desirable and

should be required in special care units. Each of the

completed guideline documents stresses the current

uncertainty about the importance of particular features and the need for research to clarify many

unresolved questions in this area.

Finally, it should be noted that like the State

regulations for special care units discussed earlier,

the completed guideline documents have not been

developed in the context of the nursing home reform

provisions of OBRA-87. Moreover, some of the

specific guidelines in these documents duplicate

provisions of OBRA-87 that apply to all nursing

homes.

CONCLUSION

As of early 1992, six States had regulations for

special care units. Five States were in the process of

developing regulations, and other States were considering doing so. These State regulations are

intended primarily to assure that special care units

are not established and operated solely for marketing

purposes and do actually provide something special

for their residents. The regulations have been and are

being developed in the absence of consensus among

experts about the particular features that are necessary in a special care unit and research-based

evidence to support requirements for any particular

features.

Several public and private organizations have

developed or are developing guidelines for special

care units. These guidelines identify areas that

require special consideration in the care of nursing

home residents with dementia but generally do not

prescribe particular features for special care units.

The six completed guideline documents stress the

current uncertainty about the importance of particu328-405 - 92 - 6 QL 3
156 ● Special Care Units for People With Alzheimer’s and Other Dementias

lar features and the need for research on the

effectiveness of various approaches to the care of

nursing home residents with dementia. These six

guideline documents are not intended to be used for

regulatory purposes.

The nursing home reform provisions of OBRA-87

create a broad, comprehensive regulatory structure

aimed at assuring high-quality, individualized nursing home care for all residents. As described in this

chapter, the provisions of OBRA-87 address many

of the complaints and concerns of families and

others about the care provided for residents with

dementia in many nursing homes. The provisions of

OBRA-87 rarely mention cognitive impairment or

dementia, but the resident assessment system developed to implement OBRA-87 focuses clearly on the

assessment of a resident’s cognitive status and the

problems and care needs that are common among

nursing home residents with dementia. Once a

resident’s needs are identified, OBRA regulations

require that the needs be met.

If fully implemented, the provisions of OBRA-87

would improve the care of nursing home residents

with dementia. The problem with OBRA-87 for

nursing home residents with dementia is the same

problem faced by State officials and others who are

trying to develop regulations for special care units:

i.e., the lack of agreement among experts about

exactly what constitutes appropriate nursing home

care for individuals with dementia and the lack of

research-based evidence of the effectiveness of

various approaches to their care. Solving this

problem through Federal support for projects to

evaluate different approaches to care may eventually

provide a substantive basis for regulations. In the

meantime, special care units are ideal settings for the

necessary research.
Chapter 6

Regulations And Interpretations of

Regulations That Interfere With

The Design And Operation of

Special Care Units
Contents

Page

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159

THE IMPACT OF REGULATIONS ON THE DESIGN AND OPERATION

OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .160

THE IMPACT OF INTERPRETATIONS OF REGULATIONS ON THE

DESIGN AND OPERATION OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . 163

CASE EXAMPLES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166

Unit Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 166

Room Arrangement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167

Keypad-Operated Locking Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167

Dutch Doors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167

Dietary Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168

staffing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 168

METHODS TO ALLOW INN0VATION IN THE DESIGN AND OPERATION

OF SPECIAL CARE UNITS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .168

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170

Tables

Table Page

6-l. Regulations and Standards That Interfere With the Use of Physical Design

Features in Special Care Units . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ● .,.,,.. 161

6-2. Massachusetts Agencies Regulating Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . 164

6-3. New York Agencies Regulating Nursing Homes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
Chapter 6

Regulations And Interpretations of Regulations That Interfere

With The Design And Operation of Special Care Units

INTRODUCTION

In the course of this study, OTA heard numerous

complaints from special care unit operators and

others about instances in which Federal, State, and

local government regulations or interpretations of

regulations interfered with the use of particular

physical design features, patient care practices, and

staffing arrangements they believed would be appropriate for individuals with dementia. Instances of

several different types have been described to OTA:

instances in which nursing homes could not get

approval for particular physical design features, patient care practices, or staffing arrangements for a special care unit;

instances in which approval for particular

physical design features, patient care practices,

or staffing arrangements was given by one

government agency and later denied by another

government agency;

instances in which approval for particular

physical design features was held up for years,

thus adding enormously to the cost of building

or remodeling the unit; and

instances in which government officials disallowed particular physical design or other

features of special care units on the basis of

regulations that were later found not to exist.

From a societal perspective, one objective-and

perhaps the most important objective of special care

units-is to develop better approaches to caring for

nursing home residents with dementia. Instances of

the types described above discourage innovation.

They interfere with the implementation and evaluation of particular physical design or other features.

More importantly, repeated instances of these types

create an atmosphere in which nursing home operators are reluctant to attempt innovations.

The problem of regulations and interpretations of

regulations that interfere with the use of innovative

physical design and other features is not limited to

special care units. In 1991, the Task Force on Aging

of the American Institute of Architects sponsored an

invitational conference on the design of facilities for

older people (11). Conference participants included

architects, gerontologists, health care and social

service providers, regulators, and representatives of

aging advocacy groups. The conference planners

anticipated that a wide range of issues and concerns

would arise. To the contrary, the issues and concerns

raised by the participants were “remarkably common...and surprisingly concentrated’ (1 1). According

to the conference report:

Top on the list of major issues identified by the

group was the plethora of regulations which has

enveloped the long-term care industry. Even with the

admission and recognition of the problem by most

Federal, State, and code bodies, the regulatory and

code environment continues to become increasingly

convoluted instead of coalescing into simpler bases

of information. These problems afford little opportunity for design or construction efficiencies to develop. The lack of regulatory consistency drives up

the cost of professional services, each project’s

development timeline, and, in turn, each project’s

cost. This unnecessary increase in project cost is then

passed onto the resident (11).

In 1987, members of the American Association of

Homes for the Aging formed a subgroup, the

Environmental Code Work Group, to identify, call

attention to, and eventually change regulations that

interfere with innovative design in all kinds of

residential facilities for older people (380). In 1990,

the Association received a grant from the Retirement

Research Foundation to establish a national clearinghouse on aging and environmental design codes

(379). The clearinghouse is a central source of

information about research and trends in environmental design for older people and about Federal and

State regulations and codes that affect the design of

facilities for older people. The primary purpose of

the clearinghouse is to assist facilities whose design

plans are challenged by government officials or

surveyors.

The extent to which regulations and interpretations of regulations interfere with the design and

operation of special care units is unclear. Many of

the respondents to a 1987 survey of a nonrandom

sample of 99 special care units in 34 States reported

that regulations had made the creation of their

special care unit “difficult, expensive, or impossi-

–159–
160 . Special Care Units for People With Alzheimer’s and Other Dementias

ble:” 17 percent of the respondents cited local

building code regulations; 18 percent cited State

nursing home licensing regulations: 26 percent cited

local fire code regulations; and 37 percent cited State

fire code regulations (494). OTA is not aware of any

other data on the proportion of special care units

affected by this problem.

To learn more about the problem, OTA contracted

for an exploratory study of regulations that might

interfere with the design and operation of special

care units (201). The study focused on regulations in

two States, Massachusetts and New York. OTA’s

contractor and OTA staff also interviewed Federal

and State officials, consumer groups, architects,

staff members of two national nursing home associations, and others in the nursing home industry to

obtain their opinions about the problem. The results

of the study and these interviews are summarized in

this chapter. Examples of instances in which regulations or interpretations of regulations have interfered

with the design or operation of special care units are

described. The last section of the chapter discusses

the need for a waiver process that would allow

special care units to implement a wide variety of

innovative physical design features, patient care

practices, and staffing arrangements. Such a process

would have to include mechanisms to evaluate the

innovations, The process would also have to include

mechanisms to protect residents’ rights in units in

which innovative approaches to care were being

tested.

THE IMPACT OF REGULATIONS

ON THE DESIGN AND

OPERATION OF SPECIAL

CARE UNITS

To understand the impact of regulations on the

design of special care units, it is useful to understand

the way design decisions are made (201). Architects

usually create a list of all the requirements a building

must meet to serve its designated purpose. Each

requirement defines a range of possible design

solutions. Regulations are among the requirements

an architect must include.

As described in chapter 5, nursing home regulations include:

. Federal regulations for Medicare and Medicaid

certification of nursing homes,

● State licensing regulations,

● State certificate of need regulations, and

. other State and local government regulations

that apply to nursing homes, such as zoning,

building, fire safety, and sanitation code regulations.

In addition, Federal, State, and local government

nursing home regulations incorporate standards

developed by various nongovernmental organizations. Federal regulations for Medicare and Medicaid certification of nursing homes require nursing

homes to comply with the Life Safety Code of the

National Fire Protection Association (NPFA) or an

equivalent State fire and safety code (463). Other

standards incorporated into some nursing home

regulations are the “Specifications for Making

Buildings and Facilities Accessible to and Usable by

Physically Handicapped People” developed by the

American National Standards Institute (ANSI), the

“Guidelines for Construction and Equipment of

Hospital and Medical Facilities” developed by the

American Institute of Architects, and building codes

developed by the Building Officials and Code

Administrators International, Inc. (BOCA).

All these regulations and standards create requirements that restrict design options. Because of the

large number and specificity of the regulations and

standards, there may be few design solutions left

(201). As a result, nursing homes are sometimes said

to have been designed “with a cookie cutter. ”

OTA’s contractor analyzed Federal regulations,

State regulations in Massachusetts and New York,

and incorporated standards to identify regulations

and standards that might preclude use of particular

physical design features in special care units. Table

6-1 shows the results of the analysis. Federal and

State regulations and standards were identified that

might preclude the use of nine design features

intended to serve three purposes: 1) coping with

resident wandering, 2) reducing agitation and catastrophic reactions, and 3) making the unit more

home-like in appearance (201). Some of the design

features, e.g., placement of resident rooms off sitting

rooms, are specifically prohibited by the regulations

and standards. Other design features, e.g., secure

exits and use of familiar furniture, are not specifically prohibited in these States, but the regulations

and standards limit the ways in which these design

features can be implemented.

Another analysis of Federal regulations, Wisconsin State regulations, and incorporated standards had
Chapter Regulations That Interfere With The Design and Operation of Special Care Units ● 161

Table 6-l—Regulations and Standards That Interfere With the Use of

Physical Design Features in Special Care Units

Federal State Incorporated

Design Features Regulations Regulations Standards

To Cope With Wandering

Public law 100-203 Section

4201 (181 9)(6)(D)(d) (2)(B) “A Skilled

facility must meet such provisions

of. . the Life Safety Code of the

NFPA as are applicable to nursing

homes.”

MA105CMR150.017(B) (5) “Activity

Areas: All facilities shall provide on

every floor and for every unit a

comfortable, convenient, wellIighted and ventilated sitting room,

day room, or solarium with a direct

outside exposure that is separate

from patient or resident rooms.”

1. Create walking loops by building around interior courtyard,

atrium, or activity area

NFPA: 12-2.4.2 “Egress shall not

require return through the zone of

fire origin.”

2. Secure exits NFPA: 12-2.5.5 “Every corridor shall

provide access to at least two

approved exits.” 12-2.2.2.4 “Doors

within a required means of egress

shall not be equipped with a latch

or lock that requires the use of a

tool or key from the egress side.”

To Reduce Agitation, Control Catastrophic Reactions

1. Use of interior finishes that

reduce noise and glare

MA105CMR1 50.017B (12)(b) “Walls

shall have a water-proof, glazed,

painted, or similar surface that will

withstand washing; floors shall be

water-proof, grease-proof and resistant to heavy wear.”

NFPA: 12-3.3.1 “Interior finish on

walls and ceilings shall be Class A

or Class B.” 12-3.3.2 “Newly installed interior floor finish in corridors and exits shall be Class L“

2. Use of clutch doors Massachusetts Department of Public

Health, Division of Health Care Quality:

“We have strong objections to the

use of clutch doors.” New York Bureau of Long Term Services: “Dutch

doors are frowned on. They can be

used as a way of locking people into

their rooms. Our fire safety people

are not thrilled about them.”

NFPA: 12-3.6.3.6 “Dutch doors may

be used. . . Both upper and lower

leaf shall be equipped with a latching device, and the meeting edges

of the upper and lower leaves shall

be equipped with an astragal, rabbet, or bevel.”

Residential Ambiance

1. Bedrooms off sitting rooms or Reg. 405-1134 “The skilled nursing

facility must meet the applicable provisions of the 1985 edition of the Life

Safety Code” and “Each room has

direct access to a corridor.”

New York Public Health Law Sec.

414.4(b) “The facility shall comply

with the pertinent provisions of NFPA

101, Life Safety Codes.”

NFPA Life Safety Code: 12-2.3.3

“Aisles, corridors, and ramps required for exit access in a hospital

or nursing home shall be at least 8

ft (244 cm) in clear and unobstructed width.” 12-2.5.1 “Every

habitable room shall have an exit

access door leading directly to an

exit access corridor.”

residential scale hallways

2. Private rooms Medicaid will reimburse at semiprivate rate only.

Rumor among providers in New York

that the State will not allow over 1/3

private rooms. State agency denies

this, says there are several Medicaid

facilities with all single rooms.

Uniform Federal Accessibility Standards: 6.3(2) and (3): “Each bed shall

have a minimum clear floor space of

42 in (1065 mm), preferably 48 in

(1220 mm), between the foot of the

bed and the wall; 36 in (91 5 mm). . .on

each side of the bed.”

3. ANSI Standards

4.

5.

Allow residents to control furniture arrangements, Allow residents in semi-private rooms

equal access to windows and

doors

Eliminate formal nurses’ station

Reg. 405.1 134(d) “Each nursing unit

has at least the following:. . nurses’

station. . equipped to register patient calls.”

Allow residents to use familiar NFPA 31-4.5.2 Bedding, furnishings, decorations in health care

occupancies. . shall be flame resistant.

furniture

SOURCE: J. Hyde, “Federal Policy in the Regulation and Funding of Special Care Alzheimer’s Units; The Role of Federal, State, and Municipal Regulation,”

contract report prepared for the ~fice of Technology-Assessment, August 1990.
162 ● Special Care Units for People With Alzheimer’s and Other Dementias

similar findings (94). That analysis also idenitfied

regulations and standards that might preclude the

use of design features intended to cope with resident

wandering, to reduce agitation and catastrophic

reactions, and to make the unit more home-like in

appearance. In addition to the regulations and

standards identified by OTA’s contractor, the Wisconsin analysis identified a Wisconsin regulation

and a Life Safety Code standard that require frequent

testing of alarms on the unit, which the analysts

believe might increase resident agitation. They also

identified a Wisconsin regulation for resident room

size which allows little flexibility in arranging the

room for other than sleep purposes.

Although both of these analyses identified regulations and standards that might preclude use of

certain design features in special care units, the

number of such regulations and standards and the

number of design features affected are much smaller

than one would expect, given the complaints cited

earlier. Moreover, many of the design features are

not specifically prohibited. Instead, as noted above,

the regulations and standards limit the ways in which

the design features can be implemented.

For several reasons, the impact of regulations and

standards on the design of special care units is

greater than is indicated by the results of the two

analyses. First, the analyses do not include local

government regulations which may interfere with

use of certain design features. Second, the analyses

do not address combinations of regulations which

together preclude use of design features that are not

specifically prohibited by any one regulation. Third,

the analyses generally do not address interpretations

of regulations that may preclude the use of physical

design features not explicitly prohibited by regulations or standards. The case examples later in this

chapter illustrate each of these situations.

In addition, cost constraints often increase the

impact of regulations and standards on the design of

special care units. Due to cost constraints, special

care units frequently are designed to meet the

minimum allowable standards. Design options may

exist that would meet the standards and fulfill other

objectives of the special care unit planners, but these

options are ruled out because they cost too much

(41,201). In such instances, it is the combination of

cost constraints and regulations, not the regulations

alone, that precludes use of particular design features.

One example of a combination of cost constraints

and regulations that interferes with innovative design in special care units pertains to regulations in

some States that require a nurses’ station on each

nursing home unit. The Wisconsin nursing home

regulations state, for example:

A centrally located nursing station having visual

access to all resident room corridors must be

provided. The station should consist of a desk or

work counter, operational telephone, and a nurse call

system and should be situated next to a medicine

preparation room (351).

Because of the cost of constructing and staffing a

nurses’ station, regulations that require a nurses’

station on each unit, and particularly regulations that

require a nurses’ station with visual access to all

resident room corridors, encourage construction of

large units with long, institution-like corridors (94).

In contrast, if cost were not a factor, a variety of

innovative designs could be used to create small,

home-like units with a nurses’ station that meets the

regulations.

Financing considerations also increase the impact

of regulations and standards on the design of special

care units. Agencies that provide financing for

nursing home construction, such as banks and State

bond agencies, are often wary of special use

buildings, since the buildings have limited reuse

potential (201). The agencies are more likely to

provide financing for facilities that meet generic,

albeit minimum, standards. Therefore, even if a

facility receives approval for a design innovation,

the facility may not be able to find financing to build

or remodel the unit.

State certificate of need programs may also

increase the impact of regulations and standards on

the design of special care units. Certificate of need

programs sometimes disapprove plans that include

features which exceed minimum requirements, e.g.,

resident room size that exceeds the required minimum square footage. These plans are disapproved

because it is assumed that the features will increase

the cost of the facility and that these increased costs

will eventually be passed on to Medicaid (202,378).

A final factor that increases the impact of regulations and standards and discourages innovation in

special care units is the large number of agencies

involved in regulating nursing homes in many

States. Tables 6-2 and 6-3 show the agencies

involved in regulating nursing homes in Massachu-
Chapter Regulations That Interfere With The Design and Operation of Special Care Units ● 163

setts and New York. The agencies listed in these

tables are responsible for site control, certificate of

need evaluations, licensure, financing, Medicare and

Medicaid certification, and/or final inspections (201).

The large number of agencies involved in each of

these regulatory functions is daunting. It increases

the difficulty special care unit operators and others

have in obtaining approval for innovative physical

design features or even understanding how to seek

such approval. The large number of agencies probably also increases the likelihood that even if

approval for the use of the innovative features is

granted by one agency, it will later be denied by

another.

Like physical design features, some patient care

practices, staffing arrangements, and other operational aspects of special care units are precluded by

regulations and standards. These operational aspects

of the units are probably more likely than the

physical design features to be affected by interpretations of regulations, as discussed in the following

section. Operational aspects of special care units are

also affected by cost constraints which require the

unit to operate as close to the minimum allowable

standards as possible. Although patient care and

staffing options exist that would meet the requirements and fulfill other objectives of the unit

operators and staff, these options frequently are not

implemented because they cost too much.

THE IMPACT OF

INTERPRETATIONS OF

REGULATIONS ON THE DESIGN

AND OPERATION OF SPECIAL

CARE UNITS

Interpretations of regulations are unavoidable.

When nursing home surveyors, building inspectors,

and fire marshals inspect a special care unit, they

have to apply their understanding of existing regulations to the particular characteristics of the unit.

Likewise, when government officials review design

plans for a new special care unit, they have to apply

their understanding of the regulations to the particular features of the plan. Unless there is a compelling

reason for allowing innovations, these individuals

are likely to be conservative in their interpretations.

The format of most regulations is conducive to

conservative interpretations (233,378). Existing regulations usually consist of a series of requirements

without accompanying statements about the purpose

or desired outcomes for the requirements. An

explicit statement about the purpose or desired

outcome of a requirement would give government

officials, surveyors, and others justification for at

least considering an innovation that might fulfill the

purpose of the requirement, if not its precise

stipulation. In the absence of such a statement,

government officials, surveyors, and others are

unlikely to take the risk of allowing the innovation.

Individual surveyors differ in their interpretations

of the same regulations. OTA has heard about

instances in which surveyors interpreted regulations

that could have been obstacles for a special care unit

in a way that made them not obstacles and other

instances in which surveyors interpreted regulations

that need not have been obstacles in a way that made

them obstacles.

Surveyors’ attitudes about nursing homes are

likely to influence their interpretations of the regulations. A study of nursing home regulation in New

York, Virginia, and England identified two different

regulatory models (117). In one model, surveyors

regard the nursing home operator as an ‘‘amoral

calculator who will risk breaking the rules for a

profit. ” In this model, the surveyor functions as a

policeman, and the inspection process is formal,

legalistic, and adversarial. In the other model,

surveyors regard the nursing home operator as

fallible but well-intentioned. The surveyor functions

as a consultant, and the inspection process is

informal and cooperative. In the United States, most

surveyors probably function more in the first model

than the second; thus, they are less likely to trust

nursing home operators or to be supportive of

facility-initiated innovations.

As noted earlier, OTA has been told about

instances in which surveyors and other government

officials have disallowed the use of innovative

physical design or other features of special care units

on the basis of regulations that were later found not

to exist. In these instances, the officials probably

assumed the regulations existed because “that’s the

way it’s always been done. ’ Thus, tradition and

precedent can preclude innovation in special care

units (201,378).

Given the large number and complexity of existing regulations and standards, it can be difficult to

determine whether a given regulation exists. For

special care unit operators and others who are told
164 . Special Care Units for People With Alzheimer’s and Other Dementias

Table 6-2—Massachusetts Agencies Regulating Nursing Homes

Agency Function Codes/regulations/standards

1. Site Control

Local Planning Department Certifies that the site is zoned for nursing home

use or is eligible for zoning variance

Reviews environmental impact

Local zoning ordinances

Massachusetts Environmental Policy Act, National Environmental Policy Act (especially when

the project will receive Federal funding), and

other laws, as applicable

State Executive Office of Environmental

Affairs

Il. Determination of Need

Determination of Need Office, State Department of Public Health1.

2,

3

Determines that applicant has control of a

site which can reasonably be expected to be

appropriately zoned and have environmental

impact approved

Determines bed need Uses a rate of 35 beds per 1000 population over

age 65 based on a State census broken down

by 6 regions

Determines ’’reasonableness of capital costs” Square footage must meet the Federal and

State minimum of 318 sq ft per bed but be no

more than 400 sq ft per bed;

uses Marshall’s Evaluation Service to determine allowed construction costs, including architecture, site evaluation, and construction

costs; currently about$100 per sq ft

4. Follows approved projects through Iicensure

to assure compliance

Determines if projected operating costs are

reasonable

Rate Setting Commission Projected operating costs must be within one

standard deviation of the median costs of other

facilities in the area

Medicaid Division, State Public Welfare

Department

Executive Office of Elder Affairs

Reviews application to ensure need

Reviews for appropriate affiliation agreements

and the management history of proposed operators

Ill. Licensure

Division of Health Care Quality, State

Department of Public Health and Architecture Department and Patient Care Surveyors

License the facility, assuring compliance with

State and Federal Iaws concerning the physical

plant and patient care

Massachusetts: 105CMI 50-1 59 Federal: Medicare and Medicaid law, HCFA rulings, and

related standards (e.g., Life Safety Code and

ANSI)

Fire department for the municipality

in which the facility is located

Assures fire safety and compliance with codes Life Safety Code and local ordinances

Building inspector for the municipality in which the facility is located

Ensures compliance with State building codes;

decisions maybe appealed to the State inspection Division, Building Section

State Building Code

IV. Obtaining Construction Financing

State Health Care Finance Agency,

HUD, or financial institutions

Ensure financial viability of the project Review all other approvals, apply own criteria

which may include requirements that the facility

could be used for other purposes

V. Certification for Medicare and Medicaid

State Rate Setting Commission Sets allowed reimbursement rates for Medicare

and Medicaid

State policies

Medicaid Division, State Public Welfare

Department

Enrolls provider in Medicaid Must have a Determination of Need certificate,

be licensed, have rate set, and be in compliance with Federal Medicaid laws and regulations

VI. Final Inspections

All agencies Any agency which has had prior authority may

review for compliance before occupancy

Local Health Departments Inspect for health code compliance State and local health codes

SOURCE: J. Hyde, “Federal Policy in the Regulation and Funding of Special Care Alzheimer’s Units: The Role of Federal, State, and Municipal Regulation,”

contract report prepared for the ~fice of Technology -Asse”=ment, August 1990.
Chapter 6-Regulations That Interfere With The Design and Operation of Special Care Units ● 165

Table 6-3-New York Agencies Regulating Nursing Homes

Agency Function Codes/regulations/standards

L Site Control

Local Planning Department Site control, zoning requirements, availability

of utilities, historical, land, environmental and

building issues, soil testing, and financing

vehicle

Local and State zoning and land-use codes

Il. Certificate of Need

State Department of Health, Office of

Health Systems Management (OHSM),

Bureau of Project Management. Copies then submitted to local Health

Systems Agency (HSA), internal review bureaus, and OHSM Area Office

Reviews for need, financial feasibility, character and competence

10NYGRR 410-416; 420-422; 730-734

Bureau of Facility Planning Ensures that the application is in accordance

with the current State Medical Facilities Plan

(as devised by HSA and OHSM)

Medical Facilities Plan

Bureau of Facility and Service Review

Bureau of Long Term Care Services

Ensures there is a public need for the facility State Need Methodology Regulations

Ensures that the proposed operator meets 10NYCRR: NY State Public Health Law

the character and competence requirements

and that the proposed programs meet regulatory requirements and address the needs

of the population to be served

Bureau of Architectural and Engineering Facility PlanningEnsures that the proposed facility meets

State construction standards, Federal requirements, and ANSI standards

10 NYCRR 710, ANSI

Bureau of Financial Analysis Review Ensures that the application is financially

feasible, i.e., the applicant has sufficient

financial resources to build the facility, and

when the facility is in operation, sufficient

income to remain financially sound

Depending on the financing vehicle, both

Federal and State regulations come into play

Ill. Licensure

Division of Health Facility Planning,

State Department of Health

Reviews and approves construction plans

and specifications

10NYCRR 710-711; 713-714

Division of Health Care Standards & 10NYCRR 410-416; 420-422; 730-734

Surveillance, State Department of

Health

Assures compliance with State operational

and patient care requirements

Division of Health Facility Planning,

State Department of Health

Issues Operating Certificate, attesting to

compliance with State Hospital Code requirements

10 NYCRR 401

IV. Obtaining Construction Financing

New York Finance Agencies, HUD, or

financial institutions

Ensure financial viability of project Review prior approvals, apply own criteria

which may include requirements that facility

be used for other purposes

V. Certification for Medicare and Medicaid

Division of Health Care Standards &

Surveillance, State Department of

Health

Assures compliance with Medicare/Medicaid

operational and patient care standards

42 CRF 442; 483

VI. Final Inspections

Division of Health Facility Planning

and Division of Health Care Standards

& Surveillance, State Department of

Health

Inspect building for compliance with approved plans10 NYCRR 710

SOURCE: J. Hyde, “FederalPolicy in the Regulation and Funding of Special Care Units: The Role of Federal, State, and Municipal Regulation, ’’contract report

prepared for the Office of Technology Assessment, August 1990.
166 . Special Care Units for People With Alzheimer’s and Other Dementias

that regulations prohibit a particular physical design

or other feature, the prospect of searching the

numerous applicable regulations and codes for a

given regulation is formidable. Sometimes it is

almost impossible to prove a given regulation does

not exist (201,378).

Architects, special care unit operators, and others

often fear that disputing government officials’ or

surveyors’ interpretations of regulations will have

negative consequences beyond the particular design

or other feature in question. They fear the officials

will delay or deny final approval for the unit.

Likewise, they fear that if they annoy the surveyors,

the nursing home or special care unit will be cited

later for violations of other regulations. Because of

the large number and complexity of nursing home

regulations, virtually all nursing homes-even very

good facilities-are out of compliance with one

regulation or another at any one time. Given these

fears, some architects, special care unit operators,

and others choose not to dispute officials’ or

surveyors’ interpretations of the regulations and to

“keep a low profile” instead.

Fire safety regulations and interpretations of these

regulations are often cited as limiting the use of

innovative physical design features in special care

units. Requirements of NFPA’s Life Safety Code,

which is primarily a fire safety code, are identified

as regulatory barriers with respect to six of the nine

design features listed in table 6-1. As noted earlier,

State and local fire code requirements were the

regulations cited most frequently in the 1987 survey

of 99 special care units as making the creation of the

special care unit “difficult, expensive, or impossible” (494).

Fire safety inspection procedures for nursing

homes vary in different States, but most of the

inspections are conducted by local fire marshals

(522). These local fire marshals have considerable

independence in interpreting and enforcing fire

safety regulations. It is OTA’s impression from

discussions with Federal and State officials and

nursing home operators that within their own

jurisdictions, local fire marshals’ interpretations of

the regulations carry great weight and are generally

accepted as final.

As noted earlier, the Federal Medicare and

Medicaid regulations incorporate the NFPA Life

Safety Code, but the Federal regulations also allow

States to use their own fire and safety codes. Many

localities also have fire safety codes. The Health

Care Financing Administration, NFPA, and State

fire marshals’ offices offer training for local fire

marshals about fire safety regulations and inspection

procedures, but fire marshals generally are not

required to take the training (217,298,522).

The objectives of fire safety regulations for

nursing homes are to minimize the possibility of

frees and to limit their effects (217,522). Although

there have been few deaths from nursing home frees

in the United States in past 15 years (probably less

than 30), the prospect of a nursing home fire is

horrifying to many people, and the objectives of

preventing such a fire or limiting its effects take

precedence in their view over other possible objectives. Fire marshals and fire safety inspectors

probably are more likely than other people to hold

this view. As a result, they are unlikely to approve

innovations they believe might increase the risk of

a fire, regardless of the potential benefits of the

innovations.

CASE EXAMPLES

The following case examples illustrate the impact

of regulations and interpretations of regulations on

the design and operation of special care units. Some

of the examples show how a combination of

regulations or a combination of cost constraints and

regulations preclude the use of physical design or

other features that are not specifically prohibited by

any one regulation. Some of the examples also show

how regulations that are probably appropriate for

nondemented residents interfere with the use of

design and other features that may benefit residents

with dementia.

Case Examples: Unit Design

One nursing home received a State demonstration

grant for a special care unit. An innovative plan was

drawn up for a unit composed of several discrete

modules in which six to eight residents would share

a single sleeping area, living room, and activity

areas. The sleeping room would have fewer square

feet per resident than the traditional nursing home

unit, but that space would be made up in the living

room and activity areas. This unit design was

considered more appropriate than the traditional

design for residents with dementia because the

residents would interact with a smaller number of

other residents and staff members every day and thus

would be less agitated. The unit could not be built
Chapter 6--Regulations That Interfere With The Design and Operation of Special Care Units . 167

because of regulations that require: 1) no more than

four residents per room, 2) a minimum of110 square

feet of space per resident in the sleeping room (as

opposed to the 40 square feet per resident in the

proposed design), and 3) bedroom doors that open

onto a main corridor (202).

A hospital that received a State demonstration

grant for a special care unit wanted to build a unit

with the residents’ rooms arranged in a large loop

around a central dining/activity room. This central

room would not have windows. The committee of

experts assembled to advise the hospital thought the

lack of windows in the central room would benefit

the residents because it would allow the facility to

maintain even light levels and reduce environmental

stimulation, thus minimizing sundowning behavior

and other manifestations of resident agitation. The

lack of windows in the central room violated State

regulations, however. After months of meetings and

hundreds of hours of architect and staff time, the

State granted a waiver for the innovation. The

waiver was temporary, however, and the facility had

to demonstrate that the dining/activity room could

be moved to an outside wall at a later date if the State

required such a change (201).

Case Example: Room Arrangement

A nursing home with a special care unit wanted to

place the beds in 2-bed resident rooms along

opposite walls to increase residents’ privacy and

allow them equal access to the windows and door.

State regulations require that each bed must have 3

feet of space on either side and 4 feet of space at the

foot. (The reasons for this requirement are: 1) to

assure that beds are accessible to residents in

wheelchairs; and 2) to assure that beds are accessible

to staff and equipment on all three sides.) Because of

these State regulations, the beds could not be placed

along the walls and instead had to jut out into the

room. To allow for two beds, each jutting out from

opposite walls with a 4-foot space between their feet,

the rooms would have to be wider and shallower than

the typical nursing home room. This was not a

problem in itself, but wider rooms, one after another,

require longer corridors. The NFPA Life Safety

Code requires that nursing home corridors be 8 feet

wide. (The reason for this requirement is to assure

that in the event of a fire when, it is assumed,

residents will be evacuated on stretchers, the corridors will be wide enough to accommodate two

stretchers side by side.) Even though the rooms

328-405 - 92 - 7 QL 3

would have the same square footage, each extra foot

of room width would require 8 additional square feet

of corridor space. Because of the cost of the extra

corridor space, the facility had to abandon this

innovation (201).

Case Examples: Keypad-Operated

Locking Systems

One nursing home remodeled a 41-bed unit to

create a special care unit. After considerable research, the staff decided the best locking system

would be one with a keypad and a 4-number code

which staff members could use to open the exit doors

but which the residents probably would not be able

to use. The doors would automatically unlock in case

of fire. The facility received approval for use of the

keypad-operated locking system from the local

building inspector, the local fire marshal, and the

State official responsible for approving physical

plans for all nursing homes. The system had been in

place for several months when the unit had its first

survey. The survey went well, but the next day, a

senior official from the State survey agency arrived

to examine the keypad-operated locking system. His

assessment, expressed in no uncertain terms, was

that the keypad locking system constituted a locked

unit and was not allowable. Only when the local

Alzheimer’s Association chapter intervened did the

survey agency agree to allow this locking system

(201).

In 1991, the Texas Department of Health began

disallowing keypad-operated locking systems in

Texas nursing homes and other residential care

facilities (78). This decision was based on an

interpretation of the Life Safety Code which was

apparently endorsed by the Dallas regional office of

the Health Care Financing Administration, even

though keypad-operated locking systems are approved for use in other parts of the country and were

allowed previously in Texas.

Case Example: Dutch Doors

A nursing home decided to install clutch doors in

its new special care unit. The certificate of need

application for the unit included a description of the

clutch doors, and the additional cost of the doors was

approved as part of the facility’s Medicaid rate. The

State project engineer approved the clutch doors after

lengthy negotiations, meetings, and correspondence

but required additional latches which could be used

to attach the top and bottom doors. Nevertheless,
168 . Special Care Units for People With Alzheimer’s and Other Dementias

when the State surveyors came for the final inspection before the unit opened, they disallowed the

doors on the basis that they constituted ‘restraints. ’

The doors continued to be disallowed despite facility

guidelines that described the rationale for the doors,

how they would be used to protect resident privacy,

and how they fit with the facility’s restraint policy

(201).

Case Example: Dietary Practices

The staff of one special care unit wanted to seat

small groups of special care unit residents together

at meal times and feed them family style. The staff

also wanted to serve some meals that consisted of

only two foods because they believed this approach

would reduce resident confusion. They planned to

meet the residents’ additional nutritional requirements with snacks. These plans were questioned by

surveyors who cited State regulations that require

“at least three meals a day that are nutritious and

suited to special needs of patients and residents’ and

“trays...large enough to accommodate all of the

dishes necessary for a complete meal, arranged and

served attractively” (201).

Case Example: Staffing

Several special unit operators interviewed by

OTA’s contractor complained about State regulations that require specific types and numbers of staff

members. One unit operator said, “I am not convinced you need separate people to do recreation and

nursing. Each person has a piece of the patient. It is

not as holistic as it could be. ’ Other unit operators

pointed out the value of occupational therapy,

recreational therapy, and other therapies in the care

of residents with dementia. If cost were not a

determining factor, a special care unit could employ

the number and types of staff required by the

regulations plus additional staff members of these

other types. Given cost constraints, this is usually

not possible (201).

METHODS TO ALLOW

INNOVATION IN THE DESIGN

AND OPERATION OF SPECIAL

CARE UNITS

As discussed in the preceding sections, some

Federal, State, and local government regulations and

standards interfere with the use of physical design

features, patient care practices, and staffing arrangements that special care unit operators and others

consider appropriate for the care of residents with

dementia. Interpretations of regulations and combinations of regulations, cost constraints, and other

factors also interfere with the use of these features.

As a result, potentially effective design features, care

practices, and staffing arrangements cannot be

implemented and evaluated. Several commentators

have pointed out that despite the diversity of existing

special care units, all the variation is within the

limited framework of existing regulations (200,273).

One possible approach to allow innovation in the

design and operation of special care units is to

eliminate regulations and standards that are found to

restrict innovative physical design and other features. Although this approach may eventually be

appropriate, lack of agreement about the particular

features that are necessary in a special care unit and

lack of research-based evidence for the effectiveness

of particular features make decisions to eliminate

existing regulations and standards premature at

present.

It is possible some existing regulations and

standards should be eliminated because they are

inappropriate for all nursing homes—for example,

regulations that were adopted directly from hospital

regulations without regard for the different purposes

and clients of hospitals and nursing homes. Some of

the regulations and standards discussed in the

preceding sections may be in that category, but most

probably are not.

As noted earlier, fire safety regulations and

interpretations of these regulations are often cited as

limiting the use of innovative physical design

features in special care units. The preceding sections

have noted several innovative design ideas that

could not be implemented because of fire safety

requirements of the Life Safety Code. Special care

unit operators and others whose ideas could not be

implemented because of these requirements might

argue that the requirements should be eliminated. On

the other hand, it is OTA’s impression based on

informal discussions with many special care unit

operators and experts in specialized dementia care

that there are few, if any, Life Safety Code requirements that all these individuals would agree to

eliminate. In fact, at a recent meeting of the patient

care and public policy committees of the National

Alzheimer’s Association, some Alzheimer’s advocates argued that fire safety precautions should be
Chapter 6-Regulations That Interfere With The Design and Operation of Special Care Units . 169

increased rather than decreased for special care units

(21).

Rather than attempting to eliminate regulations

and standards that interfere with the design and

operation of special care units, an alternate approach

to allow innovation is to create a process by which

individual special care units could obtain waivers to

implement physical design features, patient care

practices, and staffing arrangements they believe

will benefit residents with dementia. Such a process

would have to include mechanisms for protecting

residents’ rights in units in which innovative features were being implemented. The process should

also include mechanisms for evaluating the innovations.

Most existing regulatory codes, including the Life

Safety Code, have provisions for granting waivers.

In at least some States, however, the waivers that are

granted are for relatively trivial changes. A study of

waivers granted by the Massachusetts Department of

Public Health between 1985 and 1987 found that 98

waivers were granted for physical characteristics of

the facilities (200). Almost half of these waivers (43

percent) were to allow the use of mobile medicine

carts. The remaining waivers were for exemptions

from the paper towel requirement (16 percent),

changes in tub design (9 percent), number of baths

per resident (9 percent), minor variations in the

dimensions of various spaces (7 percent), changes in

the number of residents on a unit (6 percent),

furniture specifications (4 percent), and other minor

modifications (5 percent). No waivers were granted

for innovative design features.

The purpose of creating a waiver process for

special care units would be to allow the implementation and evaluation of nontrivial innovations. Since

such innovations would change the care of individuals with dementia in significant ways, the waivers

should only be granted on a facility-by-facility basis

after careful prior review by a panel of health care

professionals, Alzheimer’s advocates, industry representatives, architects, designers, lawyers, surveyors, fire marshals, and building inspectors. The panel

would have to determine whether a proposed innovation was worth evaluating and whether sufficient

safeguards had been built into the proposal to protect

residents of the unit. The panel would also have to

monitor the waivered innovations on an ongoing

basis to assure the safety and well-being of the

residents. Although such panels could be established

at any level of government, they probably would be

most appropriately set up at the State level since

States have the dominant role in regulating nursing

homes.

In addition to creating a waiver process for special

care units, several other approaches could be used to

allow innovation in special care units. One approach

would be to encourage government officials, surveyors, fire marshals, and building inspectors to be

supportive of innovations. As noted earlier, these

individuals tend to be conservative in their interpretations of regulations and standards. Training materials and programs could be created to inform them

about nursing home residents with dementia, the

need to develop more appropriate methods of care

for them, and the role of special care units in

developing those methods of care. A training effort

of this kind would be essential for the success of a

waiver process for special care units because government officials, surveyors, fire marshals, and

building inspectors would have to approve the

waivered innovations and cooperate with their

implementation.

The following approaches could be used to allow

and encourage innovation in special care units, as

well

●

●

●

●

as other residential facilities for older people:

The process for obtaining approval for new

design or other features could be simplified and

streamlined at the State level.

Relevant regulations and standards could be

compiled in a clear and easy to use format.

Any new regulations could be written in a

format that includes an explicit statement of the

purpose or desired outcome of each requirement, thus providing government officials,

surveyors, and others with a basis for allowing

innovations that meet the purpose if not the

precise stipulations of the requirement.

Inconsistencies in the requirements of different

agencies, regulations, and codes could be

identified and eliminated.

In 1990, the National Institute of Building Sciences initiated a project to compare the NFPA Life

Safety Code and the life safety standards in various

model building codes in order to identify inconsistencies and conflicts. The objective of the project is

to provide recommendations to HCFA about the life

safety requirements for nursing homes that participate in the Medicare and Medicaid programs.
170 ● Special Care Units for People With Alzheimer’s and Other Dementias

CONCLUSION

Probably the most important objective of special

care units from a societal perspective is to develop

better approaches to care for nursing home residents

with dementia. Some Federal, State, and local

government regulations and interpretations of regulations interfere with this objective by discouraging

innovation. Although special care units are diverse,

all the variation is within the limits of existing

regulations.

This chapter has discussed the need for a process

by which individual special care units could obtain

waivers to implement innovations they believe will

benefit individuals with dementia. Such a process

would have to involve prior review of waiver

requests by a panel of health care professionals,

consumer advocates, surveyors, architects, designers, and others. It should also involve mechanisms

for evaluating the innovations and mechanisms for

protecting the rights of residents of units in which

new approaches to care are being tested. The panels

probably would function most effectively at the

State level, but the Federal Government could

encourage their development through demonstration

grants.

In addition to the creation of a waiver process for

special care units, the chapter has discussed several

other methods that could be used to allow and

encourage innovation in special care units. Some of

the methods pertain primarily to special care units,

e.g., providing training materials and programs to

inform surveyors, fire marshals, and others about

problems in the care of nursing home residents with

dementia and the importance of developing alternate

approaches to their care. Other methods pertain to all

residential facilities for older people, e.g., simplifying and streamlining the process for obtaining

approval of new design or other features and

eliminating conflicts and inconsistencies in the

requirements of different agencies, regulations, and

codes.

As described in chapter 5, the current focus of

State efforts with respect to special care units is

developing regulations to assure that nursing homes

that claim to provide special care actually provide

something special for their residents. To OTA’s

knowledge, no State has created a process for

waiving regulations that interfere with the design or

operation of special care units. A few States have

provided grants to nursing homes and other facilities

to create model special care units. In at least one of

these States, the State’s own regulations made it

difficult or impossible for some of the facilities that

received the grants to implement the design or other

features they considered appropriate for individuals

with dementia, thus defeating the purpose of the

grants. If special care units are to fulfill the societal

objective of developing better methods of care for

nursing home residents with dementia, policies to

allow and encourage innovation must receive at least

as much attention as policies to regulate and control

the units.
Appendixes
Appendix A

Diseases and Conditions That Cause Dementia

Dementia 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 mayor 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, 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 immune deficiency syndrome

{AIDS);

● metabolic disorders;

● nutritional disorders;

. normal pressure hydrocephalus; and

. space-occupying lesions, such as brain tumors and subdural hematoma.

SOURCE: 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(1 1):1-6, Oct. 19-21, 1987.

–173–
Appendix B

Conceptual and Methodological Issues in Research

on Special Care Units

Numerous difficult conceptual and methodological

issues complicate the process of designing and conducting special care unit research. Table 1-3 in chapter 1 lists

many of these issues. Most of the issues were identified

and discussed at a 1990 special care unit conference

sponsored by the Alzheimer’s Disease Research Center at

Washington University in St. Louis, MO (26). Some of

the issues are being addressed by subcommittees of the

Workgroup on Research and Evaluation of Special Care

Units, an ad hoc group of researchers formed following

the St. Louis conference, and by the 10 research teams

funded through the National Institute on Aging’s “Special Care Units Initiative. ’ This appendix discusses five

of the most difficult issues.

Definition of the Term Special Care Unit

One of the most difficult issues in special care unit

research at this time is the definition of the term special

care unit. As noted in chapters 1 and 3, most descriptive

studies have used self-report-i. e., the statement of a

nursing home administrator or special care unit operator—

to identify special care units. This method of identifying

special care units misses some units, since some nursing

homes that place residents with dementia in a separate

unit and provide special services for them-an arrangement that most researchers would regard as a special care

unit-do not use the term special care for this arrangement. Such nursing homes may not respond affirmatively

to a question about whether they have a special care unit

(436).

On the other hand, using self-report to identify special

care units includes some units and other care arrangements that perhaps should not be included. A few

researchers have used additional criteria to determine

which units should be included in their samples (see, for

example, Sloane et al [413]). By doing so, they necessarily focus on a subset of all facilities that might be

considered special care units and thereby eliminate some

of the diversity that characterizes the full universe of

units.

For some purposes, the use of criteria that limit the

definition of special care unit is appropriate. For most

public policy purposes, however, the definition of special

care unit should be inclusive rather than exclusive at this

early stage in special care unit research. In this context, it

is important to note that the first information about the

large number of cluster units in some States came from a

study that did not use the term special care unit at all and

instead asked abroad question about ‘living arrangements

available for cognitively impaired (demented) residents’

(177).

Individual Variation in Symptom Progression in

Dementia

A second issue that has received considerable attention

in the general literature on Alzheimer’s disease and

dementia but relatively little attention in the special care

unit literature is the variation in symptom progression in

diseases that cause dementia. Although cognitive abilities

decline over time in Alzheimer’s disease, the rate of

decline varies greatly indifferent individuals (25,37,57,145,

228,338,479). Some individuals with Alzheimer’s disease show no decline, and a few show improvement in

their cognitive abilities over l-year to 2-year followup

periods (145,338). Most studies have found no characteristics of an individual (e.g., age, age of onset, duration of

illness, family history of dementia, or entry point test

scores) that predict the rate at which the individual’s

cognitive abilities will decline. Moreover, particular

cognitive abilities decline at different rates (37,368).

The rate of decline in ability to perform activities of

daily living also varies in different individuals and for

different activities (127,145,235,338). A pilot study of 54

nursing home residents with dementia found that 6

months after their admission to the facility, 46 percent of

those who survived showed no change in their ability to

perform activities of daily living; 29 percent showed a

decline in only one activity of daily living; and 24 percent

showed a decline in more than one activity of daily living

(62). The progression of behavioral symptoms also varies

in different individuals and for different symptoms

(127,235,394,441).

This variation in symptom progression means that for

a given individual, it is difficult to determine whether

changes or lack of changes in his or her symptoms over

time reflect the course of the individual’s disease or the

effects of a treatment intervention (e.g., placement in a

special care unit). In a study with a long duration and a

large sample, individual variation in symptom progression might have a negligible effect on the study’s

findings. Subject attrition is high in special care unit

research, however. Some special care unit studies have

lost one-third or more of their subjects in a year (80,265).

As a result, it is difficult to maintain a large sample for a

long period of time. In a study with a small sample,

individual variation in symptom progression could easily

obscure the effects of the treatment intervention.

–174-
Appendix B-Conceptual and Methodological Issues in Research on Special Care Units . 175

Lack of Validated Measurement Instruments

A third issue in special care unit research is the lack of

validated instruments to measure many of the potentially

important characteristics of the units, the residents, their

families, and the unit staff members. As noted in table 1-3

in chapter 1, many of the available instruments exhibit

ceiling or floor effects that obscure the full range of

positive or negative changes in resident and family

characteristics (57,1 13,145,228,265).

Measuring subjective variables in individuals with

dementia is particularly difficult (244,272). Several

innovative instruments and methods have been proposed

to measure feelings, comfort, and degree of satisfaction

(197,271,442), but this remains a formidable problem for

special care unit researchers.

Some special care unit studies have used staging

instruments to classify their subjects. These instruments

define stages of dementia or Alzheimer’s disease based on

a combination of cognitive impairments, mood, functional impairments, and behavioral symptoms (see, for

example, Reisberg et al. [372]). Staging instruments are

useful for many purposes, but they tend to mask

individual variation in symptom patterns and progression

(53,127). Many studies have found only modest correlations between the cognitive impairments caused by an

individual’s dementing disease and either the individual’s

ability to perform activities of daily living

(43,124,344,369,410,472,508) or the individual’s behavioral symptoms (111,394,431,441). Moreover, many

dementia experts expect special care units to affect these

domains differently: few experts expect the units to

reduce residents’ cognitive impairments, for example, but

many experts expect the units to reduce residents’

behavioral symptoms. Staging instruments that combine

these domains are likely to obscure any effect of the

special care units. For this reason, staging instruments

probably should not be used to classify subjects in this

research, especially in studies with small samples.

Accuracy of Proxy Responses

A fourth issue in special care unit research is the

accuracy of proxy-derived responses. Because of the

cognitive impairments of nursing home residents with

dementia, researchers sometimes must rely on proxy

respondents-usually family members or friends of the

resident—to provide information about the residents.

Little is known about the accuracy of these responses

(278). One study of 53 nursing home residents who were

not severely cognitively impaired found that proxy

responses were more likely to match the residents’

responses on questions about readily observable and

long-lasting conditions and less likely to match their

responses on questions about subjective or temporary

conditions (280). Another study of 152 nursing home

residents who were not severely cognitively impaired

found that proxy responses with respect to the residents’

satisfaction with specific aspects of their nursing home

care were no more likely to match the residents’ responses

than would be expected by chance (239). The researchers

concluded that the ability of family members and friends

to represent residents’ satisfaction with nursing home

services is limited and inconsistent.

Number and Complexity of Variables

A final issue is the sheer number and complexity of the

variables in special care unit research. As noted in table

1-3 in chapter 1, it is difficult to determine which of the

many characteristics of the units, the residents, their

families, and the unit staff members are important to

study. The experimental variable, the special care unit, is

multidimensional. As Lawton has noted:

The experimental variable (is) not a redecorated

ward or a new building, but an entire system

composed of countless physical and staff changes,

sometimes a new resident mix, different treatment

programs, and not least, changed expectations by

staff, residents, and administrators (241).

Some people argue that it is the milieu of a special care

unit rather than any of its particular characteristics that

constitutes the experimental variable. Their contention

may be valid, but defining the concept milieu has caused

difficulties in research on inpatient psychiatric care for 30

years and is unlikely to be any easier in special care unit

research (436).

The number and complexity of the variables in special

care unit research and the many other conceptual and

methodological issues discussed above and listed in table

1-3 contribute to the difficulty of designing and conducting special care unit research. These factors account, at

least in part, for the current lack of definitive answers

about the effectiveness of special care units.
Appendix C

Acknowledgements

OTA is grateful for the assistance of the contractors and many other individuals and organizations that contributed to

this report. In addition, OTA thanks the following individuals who reviewed the report.

Debby Beitler

Alzheimer’s Association

Chicago, IL

Leonard Berg

Washington University School of Medicine

St. Louis, MO

Shawn M. Bloom

American Association of Homes for

the Aging

Washington, DC

Betsy Brawley

Design Concepts Unlimited

Sausalito, CA

Kathleen C. Buckwalter

University of Iowa College of Nursing

Iowa City, IA

Sarah Burger

National Citizens Coalition for Nursing

Home Reform

Washington, DC

Margaret P. Calkins

Innovative Designs in Environments for an

Aging Society

Milwaukee, WI

Paul K. Chafetz

University of Texas Southwestern

Medical Center

Dallas, TX

Uriel Cohen

University of Wisconsin/Milwaukee

Milwaukee, WI

Susan Cooley

U.S. Department of Veterans Affairs

Washington, DC

Dorothy H. Coons

University of Michigan

Ann Arbor, MI

Michael S. Franch

Maryland Department of Health and

Mental Hygiene

Baltimore, MD

Rickey R. Greene

New Jersey Department of Health

Trenton, NJ

Lisa P. Gwyther

Duke University Medical Center

Durham, NC

Catherine Hawes

Research Triangle Institute

Research Triangle Park, NC

Douglas Holmes

Hebrew Home for Aged at Riverdale ‘

Riverdale, NY

Joan Hyde

University of Massachusetts

Boston, MA

Rosalie A. Kane

University of Minnesota

Minneapolis, MN

Bill Keane

St. Lawrence Rehabilitation Center

Newtown, PA

Tom Kirk

Alzheimer’s Association

Chicago, IL

Kathleen Mann Koepke

Washington University School of Medicine

St. Louis, MO

M. Powell Lawton

Philadelphia Geriatric Center

Philadelphia, PA

Joel Leon

George Washington University Medical Center

Washington, DC

David A. Lindeman

Northern California Alzheimer’s

Disease Center

Berkeley, CA

Nancy L. Mace

Pacific Presbyterian Medical Center

San Francisco, CA

–176-
177 ● Special Care Units for People With Alzheimer’s and Other Dementias

Jay Magaziner Philip D. Sloane

University of Maryland at Baltimore University of North Carolina at Chapel Hill

Baltimore, MD Chapel Hill, NC

Rhonda Montgomery

Wayne State University

Detroit, MI

Nancy Orr-Rainey

Hillhaven Corporation

Takoma, WA

Marcia Ory

National Institute on Aging

Bethesda, MD

Peter V. Rabins

Johns Hopkins University School of Medicine

Baltimore, MD

Joanne Rader

Benedictine Institute

Mount Angel, OR

Marcia Richards

American Health Care Association

Washington, DC

Cheryl Riskin

LeVine Institute on Aging

Detroit, MI

Anne Robinson

Alzheimer’s Care and Training Center

Ann Arbor, MI

Mary Tellis-Nayak

Joint Commission on Accreditation of

Healthcare Organizations

Chicago, IL

Jeanne A. Teresi

Hebrew Home for the Aged at Riverdale

Riverdale, NY

Ramon Vane

San Diego State University

San Diego, CA

Ladislav Volicer

E.N. Rogers Memorial Veterans Hospital

Bedford, MA

Peter Whitehouse

University Hospitals of Cleveland

Cleveland, OH

Barry W. Rovner

Jefferson Medical College

Philadelphia, PA
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