Vital and

Health Statistics

Proceedings of the

1991 International

Symposium on

Data on Aging

Series 5:

Comparative International Vital and Health

Statistics Report

No, 7

The 1991 International Symposium was convened from September 4 to 6, in Rockville, Maryland, as

a follow-onto a 1988 symposium. The 1988 symposium focused on developing a research agenda

on measuring health and health care for the elderly in a standard manner to permit valid

comparisons across nations, The theme of the 1991 Symposium was “Meeting the Challenges of

an Aging World.” Its purpose was to share the interim results of the research agenda from the 1988

sympaslum and to review the goals for the next few years. Speakers and participants were

distinguished international experts from a dozen different countries and a variety of organizations.

They were selected for their expertise in the five topics addressed by the International Symposium:

health promotion, vitality, functional disability, outcomes of nursing home care, and common

chronic diseases.

Manning Feinleib, M.D., Dr. P.H., Editor

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Public Health Service

Centers for Disease Control and PreventIon

National Center for Health Statistics

Hyaftsville, Maryland

August 1993

DHHS Publication No. [PHS)93-1483
——

——

Copyright Information

All material appearing in this report, except for chapter 4 where speclflc sc~,ce

is given, is in the publlc domain and may be reproduced or copied w!thou!

permission; citation as to source, however, IS appreciated.

—

Suggested Citation

Feinlelb M, ed. Proceedings of the 1991 International Symposium on Data ,

Aging. Nalional Center for Health Statistics. Vtal Health Stat 5(7). 1993

Library of Congress Cataloging-in-Publication Data

International Symposium on Data on Aging (1991: Rockvllle, Md )

Proceedings of the 1991 international Symposium on Data on Aging

p cm. – (DHHS publication; no. (PHS) 93–1483) (Vial and health

statistics. Comparative international wtal and heaith stat! sttcs report,

Manning Fefnleib, editor.

“August 1993” –Cover.

inciudes bibhographical references

ISBN 0-8406-0476-9

1, Aged – Health and hygiene – Congresses. 2. Aging – Congresses

Feinletb, Manning, 1935– Il. Nationai Center for Health Statlst!cs (U S.} 1:1

Title. IV. Series, V. Series: Vitai and health statistics. Series 5, Comparative

international vital and health statistics reports : no. 7

[DNLM: 1. Aged – congresses. 2. Aging –congresses. 3. Chronic

Disease– in old age–congresses. 4. Health Promotion – In oid

age –congresses. 5. Long-Term Care–congresses. W2 A N148ve no,7]

RA564.8,156 1991

362.1 ‘9897’ –dc20

DNLM/DLC

for Library of Congress 92-48240

CIP

For sale by the U.S. Government Printing OffIce

Superintendent of Documents

Mail Stop: SSOP

Washington, DC 20402-9328
National Center for Health Statistics

Manning Feinleib, M.D., Dr. P.H., Director

Jack R. Anderson, Acting Deputy Director

Jacob J. Feldman, Ph. D., Associate Director for

Analysis and Epidemiology

Gail F. Fisher, Ph. D., Associate Director for

Planning and Extramural Programs

Peter L. Hurley, Associate Director for Vital and

Health Statistics Systems

Robert A. Israel, Associate Director for

International Statistics

Stephen E. Nieberding, Associate Director for

Management

Charles J. Rothwell, Associate Director for Data

Processing and Services

Monroe G. Sirken, Ph. D., Associate Director for

Research and Methodology

David L. Larson, Assistant Directoq Atlanta

Office of Vital and Health Statistics Systems

Peter L. Hurley, Associate Director for Vital and

Health Statistics Systems

Joan F. Van Nostrand, NCHS Coordinator of

Data on Agz”ng
Contents

Chapter 1. Welcome and charge by Manning Feinleib . . . . . . . . . . . . . . . . . . . . . . . . ..$ . . . . . . . . . . . . . . . . . . 1

Chapter 2. Crosscutting issues onhealth anddisabili&: Introduction by Gene D. Cohen . . . . . . . . . 3

Chapter 3. Healthy aging by John Rowe . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Chapter 4. Models of disability by Pierre Minaire . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Chapter 5, Crosscutting issues onlong-term care: Introduction byDiane Rowland . . . . . . . . . . . . . . . 19

Chapter 6. Cognitive function and the elderly byBarry Gurland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Chapter 7. Long-term care policy ininternational perspective by Pattick Hennes~ . . . . . . . . . . . . . . . 27

Chapter 8. Crosscutting issues on other international research on aging: Introduction

by Gwendolyn S. King . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

Chapter 9. International research unhealthy life expectancy by George C. Myers . . . . . . . . . . . . . . . . . 33

Chapter 10. World Health Organization Program for Research on Agingby Stefania Ma~” . . . . . 43

Chapter 11, Health promotion anddisease prevention workshop by Ge~E. Hendershot . . . . . . . . 51

Chapter 12. Vitali~workshop byRichard Havlik . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55

Chapter 13. Functional disability workshop byMary Grace Kovar . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59

Chapter 14. Outcomes ofnursing home care workshop by Joan F. Van Nostrand . . . . . . . . . . . . . . . . . 63

Chapter 15. Chronic disease common intheelderly workshop by Tamara Hati . . . . . . . . . . . . . . . . . 67

Chapter 16. Closing comments: Netisteps forthe ICEonaging by Manning Feinleib . . . . . . . . . . . . 69
Chapter 1

Welcome and charge

by Manning Feinleib, M. D., Dr.P.H.,

National Center for Health Statistics

Welcome

Good morning and welcome! I’m Manning

Feinleib, Director of the National Center for

Health Statistics (NCHS), the sponsor of this

1991 Symposium on the International Collaborative Effort (ICE) on Aging, Measuring Health

and Health Care, also known as the ICE on

Aging.

Before I explain how ICE on Aging came to

be, let me thank two people who were instrumental in seeing that this ICE on Aging symposium

came to be – Joan Van Nostrand, the NCHS

Coordinator of Data On Aging, and Jacqueline

Davis from the Office of International Statistics.

I would also like to thank the many other people

who helped put this symposium together.

I should make one announcement about the

package that you received. The world map is

currently being revised. We hope by the next

symposium it will be up to date on the latest

developments in some of the larger areas of the

globe.

We launched the ICE on Aging in 1988 in

response to the unprecedented challenge that

the world’s aging population presented. These

challenges are described in the Proceedings of

the first symposium held in December 1988 and

should be in your conference packet. True to the

International Collaborative Effort emphasis, the

Proceedings include papers from our international

colleagues as well as from the U.S. participants.

NOTE The affiliations shown in the papers in this report are

those in effect at the time of the International Symposium on

Data on Aging. The opinions expressed are those of the authors,

not of the organizations for which they work.

Theme

The first symposium focused on developing a

research agenda on measurement issues, such as

how to measure health and health care for the

elderly in a standard manner to permit valid

comparisons across nations. Although the first

symposium focused on aging well, this symposium has been broadened to cover the entire

spectrum of health issues of the aging, from

healthy aging to disability. That is why we have

chosen the theme “Meeting the Challenges of an

Aging World” – to review these challenges of an

aging world and to share with you the interim

results of the ICE on Aging. At this symposium,

we will examine where we are, what has been

accomplished so far, where we are going, and

our goals for the next few years.

International effort and purpose

The international forum provided by

on Aging, including Australia, Canada,

the ICE

France,

Hong Kong, Hungary, Israel, Italy, Norway, the

Netherlands, the United Kingdom, and the

United States, allows us to join with a large

cadre of experts around the world who are

researching methods to improve measurements

of both health and health care for older people.

One specific objective of this effort is to apply

the research results to NCHS programs in order

to strengthen the collection, analysis, and dissemination of data on aging. The international emphasis also permits the exchange of diverse

perspectives, approaches, and insights among

nations facing similar situations and challenges.

The fruits of this collaboration will be

1
disseminated widely to encourage international

applications.

Five main research topics

Among the many research proposals outlined at the first symposium, five broad research

areas emerged. These have been reformulated

and now consist of

. Health promotion and disease prevention

● Measurement of vitality in older persons

. Comparative analysis of health statistics for

selected diseases common in older persons

. Functional disability

. Measuring outcomes of nursing home care

Research teams for each topic were formed, and

these included an NCHS staff member or one

from the” National Institute on Aging as principal investigator and several herican and international researchers from government agencies,

universities, and research organizations.

Modifications and changes

As is often the case, some changes to the

initial concepts of the various research projects

and research teams were made along the way. I

am sure you are all familiar with the old saying,

“the only constant in the universe is change,”

Even for researchers, or perhaps especially for

researchers, this is always the case. Our researchers often discovered that data that they had

thought would be readily available were in fact

not available at all. Others who plan to use

certain data find that the data do exist, but the

content limits comparability. ICE on Aging researchers have not been exempt from these

obstacles, and I would say these only prove that

“Meeting the Challenges of an Aging World”

was an apt choice as this year’s theme.

In addition to reformulating the topics and

schedules, some of our colleagues have changed,

and researchers from additional countries have

joined the research projects. How data eluded

the research teams and why some of the researchers have changed will be discussed in special

sessions Thursday afternoon.

Discussions

At the concurrent workshop sessions on

Thursday afternoon, you will have the opportunity to hear about and discuss many issues,

including

. Research plans that had to be modified

. How reality intruded upon research

. How cultural differences that arose during

the course of our projects were handled

● Questions that arose after the research began I

Because there are no question-and-answer periods during the plenary sessions, I ask you to hold

your comments, questions, and suggestions for

other topics you wish to discuss until tomorrow’s

working sessions.

Importance

The problems of aging have been with us

since men and women were first able to survive

beyond the reproductive period. It is safe to say

that these problems will be with us as long as

mankind continues to survive. We have gathered

to talk about contemporary research regarding

problems of measurement, but perhaps we should

consider at least one other perspective. Aristotle

lived from 384 to 322 B.C., dying at the age of

62, a ripe old age in that period. He studied

under Plato, he educated Alexander the Great,

and he had this to say about time and aging,

“Time crumbles things; everything grows older

under the power of Time and is forgotten through

the lapse of Time.” In Aristotle’s day, that was

quite true; and many of our older people today

would agree with the pessimistic implications of

Aristotle’s statement. But as was said before,

things change, and for most of us here, there is

considerable optimism that we can solve some of

these problems that truly span the ages. The

ICE on Aging and this symposium will shed

some light on this issue and justify our optimism.

2
Chapter 2

Crosscutting issues on

health and disability:

Introduction

by Gene D. Cohen, M.D., Ph. D.,

National Institute on Aging, National Institutes

of Health

It is a pleasure to be here in this very

important international meeting on measuring

health and health care. I would like to congratulate the National Center for Health Statistics

for putting together such a fine conference.

I was reviewing the agenda for the meeting at

home while my teenage son was listening to a

new rap album by a group called “Vanilla Ice.”

When he saw this ICE on Aging, he asked if I

were going to an aging rap group meeting. I said,

“Perhaps.” To state the obvious, cross-national

research is valuable because it identifies universal health trends. At the same time, it suggests

the extent to which age-associated changes in

health and functioning can be modified. This is

probably the true value of international research

and comparisons.

The National Institute on Aging (NIA) works

in close collaboration with the World Health

Organization Program on Aging. In fact, this

program is housed in NIA office space – a nice

symbol for our effective collaboration.

In all of our research, both domestic and

cross-national, NIA has a vision that research on

aging offers the best opportunity to reduce risk

factors leading to costly long-term care services

and promote independent functioning in later

life.

Aging research is influenced by many international perspectives. I would like to share two

very striking views of old age —striking because

they are opposite, yet both are absolutely true,

Does this sound like a statement from the sphinx?

Let me illustrate, Here is a quote from

Shakespeare in his 16th century masterpiece

“As You Like It”:

Last scene of all, that ends this strange

eventful history in second childishness and

mere oblivion, saris teeth, saris eyes, saris

taste, saris everything.

The second is a quote from Cicero’s “De

Senectute,” written in the first century B.C.:

Intelligence and reflection and judgment

reside in old men, and if there had been

none of them, no states could exist at all.

Totally different statements, yet both accurate.

Shakespeare describes illness and disability in

later life, and Cicero portrays the health and

vitality of old age. Both conditions will be better

quantified and understood thanks to the contributions of the ICE on Aging.

The second international perspective is a

myth from Greek mytholoW dating back 25

centuries. Its relevance is clear today as we look

forward to the extraordinary developments anticipated in research over the next 25 years. It is

the myth of Tithonus. In this story, there are

three key characters: Tithonus, a mere mortal;

Eos, the Goddess of Dawn; and Zeus –known as

both mighty and tricky. Tithonus fell in love with

Eos. Because she was a goddess and immortal,

Eos was concerned that she would outlive her

lover Tithonus. She pleaded with almighty Zeus

to bestow immortality upon her lover. She asked

3
this with some trepidation, remembering Zeus’ more frail each day. To avoid the plight of

reputation for being unpredictable. To Eos’ sur- Tithonus, research on aging must ensure that

prise, Zeus granted her wish and bestowed im- science allows the quality of life to keep pace

mortality upon Tithonus. However, because Zeus with its quantity. And with that, I wish you a

left out the essential ingredient of eternal youth, successful conference.

Tithonus grows older and older and more and
Chapter 3

Healthy aging

by John Rowe, M. D., Mount Sinai School of

Medicine, Mount Sinai Hospital, New York

This paper aims to share with you a perspective from studies I have been coordinating over

the past several years under the aegis of the

MacArthur Foundation Research Network on

Successful Aging. The MacArthur Foundation

has a set of networks in various areas of health,

primarily in human development and in mental

health, The Network on Aging was established

6 years ago as an interdisciplinary, long-term

research approach to aging.

The interdisciplinary group includes basic

neuroscientist, physiologists, sociologists, physicians, and methodologists. We work together

designing research projects in animal and human

populations to evaluate the factors that permit

older individuals to function successfully. The

members of the group are Marilyn Albert, Lisa

Berkman, Daniel Blazer, Carl Cotman, David

Weatherman, Caleb Finch, Norman Garmezy,

Robert Kahn, Gerald McClearn, Guy McKhann,

Richard Mobs, John Nesselroade, Edward

Schneider, and Teresa Seeman.

Although one of our aims has been the

establishment of an approach to field studies of

characteristics of aging populations, from both a

financial and a time point of view, this is not a

dominant part of our effort. Much of our work

has been basic neuroscience.

In this paper, I would like to describe the

conceptual background and the products to date

and the current activities related to these field

studies of successful aging.

Let me begin with an overview of the rationale for these studies. Our approach basically is

that most research related to aging has focused

on, and perhaps has been preoccupied with,

disability. We have measured disability in different ways and focus on the losses that occur

with advancing age and the various diseases that

occur increasingly frequently with advancing age.

In the MacArthur studies, we have tried to

evaluate what is generally considered to be the

normal population of the aged. Therefore, we

exclude those disabled individuals who have been

the focus of much of the research of most

investigators.

The term “normal” is not informative. The

population of “normal” individuals included individuals who are in fact at substantial risk, and

the term “normal” implies that things are as

they were meant to be, that they should not or

cannot be changed. We view this “normal,”

nondiseased population as including individuals

that can be stratified into different groups. The

two major groups we identify are “usual” aging

and the smaller group of “successfully” aging

individuals. The challenge to all of us is to

enlarge the proportion of this “normal” aged

population that are aging successfully.

We see the usual aging group as having a mix

of characteristics that are functions of aging per

se, the intrinsic aging process and functions that

are the result of the passage of time, exposure to

elements, etc. Our basic hypothesis is that there

is less to aging than we thought. The intrinsic

aspects of aging are less important than previously thought, both from a physiological point of

view and from a sociological and behavioral

5
point of view. The acquired aspects of aging play

a very important role in determining the functional capacity of individuals. Usual aging, as we

see it, includes factors that vary considerably

between individuals with both intrinsic and extrinsic determinants, These usual aging characteristics are associated with significant attributable

risk and they are, in many instances, modifiable.

Variability is particularly important in the

physiologic aspects of usual aging. Most data

sets do not show significant differences between

individual increases in variance with advancing

age in social and behavioral characteristics. But

in physiological characteristics, almost all of the

data sets show increasing variability. This is true

of most, if not all, physiologic characteristics,

including blood pressure, blood sugar response

to glucose challenge, bone density, cardiac and

lung functions, renal function, immune response, many central nervous system characteristics, and the capacity to metabolize and

eliminate many pharmacologic agents.

With regard to the intrinsic and extrinsic

determinants, let me review one example from

the study by Vestal on antipyrine clearance with

age conducted with members of the longitudinal

study of the National Institute on Aging based at

the Gerontology Research Center. In this crosssectional study, there is a highly statistically

significant effect of age on antipyrine clearance.

However, there was marked variance in the data,

and detailed analysis demonstrated that an extrinsic lifestyle factor, cigarette smoking, described a greater proportion of the variance in

the data set than did age. Much of what initially

appeared to be an “aging effect” actually was

due to differences in smoking prevalence across

different age groups.

Thus, in this case and many others, there

might be less to aging than we thought, and

more of what we attributed to intrinsic aging

might, in fact, be acquired.

Another example relates to blood sugar. There

is a remarkable increase with advancing age in

post–glucose challenge blood sugar levels. In

apparently healthy nondiabetics who are not

obese and not on any medicines, it has been

found that, in older individuals who did not have

an adequate diet and were not very active,

53 percent have abnormal glucose tolerance tests,

In a group of older individuals with normal diet

but low physical activity, only 33 percent have

abnormal glucose tolerance tests. In a group of

older individuals with normal diet and normal

activity, only one-sixth have abnormal glucose

tolerance tests.

An important aspect of “usual” aging factors

is the risk attributable to them of subsequent

serious illness and functional loss. In a study of

usual aging by Zavaroni and colleagues, the

relationship between blood sugar and blood insulin levels and age, weight, activity, and medications of workers in an Italian pasta factory was

evaluated. On invariate analysis, significant effects were found for age, weight, and medications on the dependent variables of blood glucose

and insulin. Insulin levels are particularly important because hyperinsulinemia, common in older

persons, is an independent risk factor in the

development of coronary disease. However, when

partial correlations were calculated with regard

to insulin, the effects of age decreased and

increases in insulin were found to be related

more to other extrinsic factors (that is, obesity,

activity, and medications) than to age.

The risk of usual aging characteristics is of

prime importance. A study of interest in this

regard was conducted by Donahue and colleagues. This 12-year followup of 6,400 nondiabetic men, who were ages 45–70 years at entry

from the Honolulu Heart Program, related the

l-hour postprandial glucose to the subsequent

risk of coronary disease, In this “normal” population, using the risk of the development of
either a fatal or nonfatal heart attack, they Finally, there are increasing data from a

found that increasing glucose level in the normal number of sources that show that many of these

population was associated with a more than factors of usual aging are indeed modifiable.

twofold increase in the risk of fatal heart attack

and an approximately 50-percent increase in the

risk of nonfatal heart attack.

7
Chapter 4

Models of disability

by Pierre Minaire, M.D., School of Medicine,

University Jean Monnet, Saint-Etienne

For many years now, life expectancy has

increased slowly but steadily. Unfortunately, the

mortality rate and life expectancy do not provide

a sufficient description of the real health status

of populations. A growing interest in chronic

diseases and chronic conditions (for instance

post-traumatic or secondary to genetic abnormalities) has fostered a renewed interest in the

concepts of disability and disablement. Medically speaking, consequences of disease are appreciated not only in terms of mortality, but also

morbidity. On extended life spans, medical diagnosis tends to become less important than existential problems of daily life, for individuals as

well as for institutions, policy makers, or epidemiologists. International comparisons show that

a major difficulty resides in the definition of

disability and, more particularly, disablement.

Disablement is a process related to an experience of disease. At first sight, health can be

defined at least as the absence of disease, but is

it only that’? What is disease? What is health?

The answers to these questions are a prerequisite to the analysis of theoretical models. The

models have to be constructed on clear definitions or concepts that will guide the choice and

the design of relevant instruments.

Biomedicine, as it is defined in Western

cultures, includes a wide array of knowledge,

practices, organizations, and social roles dealing

NOTE Copyright, 1992, Bulletin of the World Health Organization, 70(3):373-9,

Reprintedwithpermission.

with “diseases.” Disease is what physicians and

biologists study. Disease signifies an abstract

biological condition, independent of social behavior. It is also a deviation from a narrow range

of physiological and biological variables that are

common to the human species.

Illness is the clinical situation of the patient

suffering from a disease. Little consideration is

usually given to the sufferer in this concept,

much more is given to the disease itself. This

attitude of separation is fostered by longstanding

traditions of medicine, and of physicians, and

has constituted the basis for an abundant literature, including dramas, comedies, and even tragedies, as well as technical reports.

Health is certainly related to freedom from

disease. But this negative, monofactorial definition can be poorly applied to the emerging field

of chronic diseases, in which the current distinction between the medical and social aspects of

illness appears to be nonoperant. At the present

time, health is also defined as a complete state

of physical, mental, and social well-being; or the

capacity to function optimally in the individual’s

environment; or an adaptation to the environment

(or to the milieu). Thus, the development of a

disease “does not simply eliminate or incapacitate an individual in some mechanical sense, but

rather affects the individual’s capacity and performance as a participating member of a highly

interdependent group” (l).

Initially, these definitions were supposed to

be unmeasurable. The recent focus of interest

on disablement (conceived as a process leading

9
to disability and handicap) has fostered the

development of techniques to measure health

such as it is defined above (2).

In summary, the shift over the past 30 years

from:

1. “survival” to

2. “freedom from disease” to

3. “the individual’s ability to perform his

daily activities” and to

4. the positive themes of “well-being” and

“quality of life”

explains and supports the four theoretical models that can be currently identified: the biomedical model, the ICIDH (WHO) model, the

situation handicap model, and the Quality of

Life model.

The biomedical model

It can be defined as the following sequence,

based on the concept of disease:

etiology —> pathology —> manifestation

This model has been criticized by many researchers, who state that biomedical diseases are usually and inadequately considered to be “common”

to humans and to social groups. Conversely, it

has been observed that biomedical diseases are

not only defined by negative anatomical, biochemical, and physiological variables, but also particular physical, cultural, and social factors. Diseases

are therefore neither invariable nor universal

(3).

In reality, this accurate observation should

not overlook the fact that some variables related

to disease are of some prospective value for the

assessment of the disablement process, at least

as key elements of the introduction of the individual into the process.

Three groups of useful biomedical variables

can thus be identified: diagnosis and lesions,

symptoms, and other related indicators, particularly physiological and economic.

10

. Diagnosis and lesions: it was observed long

ago that certain diagnoses and lesions are

associated with a high probability of disablement. Diagnostic labeling is certainly not

enough to characterize the quality and the

severity of the disability and handicap, but it

may constitute a relevant and even valid

portal of entry into the disablement process

and can be used as such in demographical

and epidemiological surveys. However, it must

be remembered:

1. that there is no “linearity” between

the type and severity of the diagnosis

and lesions and the consequences of

the “disease”; and

2. that the indication of the degree of

dependence expressed by the diagnosis remains unreliable when compared

to the valuable information it provides

for the management of the disease.

. Symptoms are also important for determining the acute medical management (4).

Nevertheless, it has been shown that symptoms such as exertional chest pain, chronic

productive cough, breathlessness, and exertional pain in the calves (intermittent claudication), have a consistent rank order in the

daily-life activities that people are unable to

perform. This order is modified with increasing severity and multiplicity of symptoms.

. Other related indicators, such as:

1, blood glucose levels, respirato~, or

cardiac parameters; or

2. consulting rates, number of days in

hospital, and number of days in incapacitation

constitute obvious potential indicators of

possible disabling consequences, Their real

value in this respect has to be precisely

assessed.
The ICIDH model

In 1980, the World Health Organization

(WHO) presented the International Classification of Impairments, Disabilities, and Handicaps

(ICIDH) to support the identification of the

consequences of diseases (5). The construction

of the conceptual model is based on four principal events:

“something abnormal occurs within the

individual.

someone becomes aware of such an

occurrence.

the performance or behavior of the individual may be altered as a result.

the awareness itself, or the altered performance or behavior to which this gives rise,

may place the individual at a disadvantage

relative to others.” (5)

This succession of events goes from an interiorized to an exteriorized experience, and to a

socialization of the experience. This has been

clarified by the proposal of three dimensions,

which can be represented in the following

sequence:

Disease

Accident

}

Impairment —> Disability —> Handicap

Abnormality

The meaning of the different terms may be

summarized as follows:

hpahzerzt-Any disturbance to the body’s

mental or physical structure or functioning. The

impairment is characterized by a permanent or

temporary loss or abnormality of psychological,

physiological, or anatomical structure or function in a tissue, organ, limb, functional system,

or mechanism in the body.

Disability –A reduction or loss of functional

capacity or activity resulting from an impairment. Disability is characterized by excesses or

deficiencies of customarily expected behavior or

functions, and represents the objectification of

impairments through their effects on everyday

activities.

Handicap –The social disadvantage resulting

from an impairment and/or a disability, entailing

a divergence between the individual’s performance or status and that expected of him by his

social group. Handicap therefore represents the

social and environmental consequences of impairments and disabilities.

These three dimensions constitute an original conceptual framework largely discussed, if

not yet universally accepted. These dimensions

are highly recognized as a tool for analysis and a

sound basis for the design of relevant instruments for the assessment of the disablement

process. The development of measurements ofphysical functioning has followed this framework: from impairment scales toward measuring

disability (functional limitations and activity

restrictions) (6,7) and subsequently handicap

(fulfillment of social roles, mobility, physical

independence, occupational abilities).

The main advantage of the ICIDH model is

that it provides a common “language” for the

numerous and various actors of handicap. This is

probably due to the resolute shift away from the

biomedical model. It is also incidentally an efficient teaching instrument. The model is applicable to individual assessment, as well as to

population surveys and samples (8). It is useful

for prevention and planning. Finally, it avoids

the usual partitioning between the medical and

social consequences of disease (9,10).

The main criticism formulated against the

ICIDH model is the excessive emphasis placed

on the individual experience as a source and

support of the disablement process to the prejudice of the role of the environment. Secondly,

the concept of temporal or causal sequence

cannot be applied as a fully developed description of disablement experience because it remains difficult to draw a clear dividing line

between each of the conceptual elements.

11
The situational handicap model

Disablement is a process which unfolds with

time. More precisely, disablement is a variable

depending on life situations. These situations

take place at different moments of the life process and may vary with time. Life is a combination of macro-situations (school, housing,

professional activities, sports, family life, etc.),

composed of micro-situations (driving, moving in

and out, opening doors, windows, cans, etc.),

which all constitute a particular environment,

Handicap is the result of the encounter between disability and the situations of the environment. The disability process thus includes

many aspects of the environment analyzed in

terms of situations. Disablement constitutes a

social system functioning in a given environment. The description of the system corresponds

to a description of its structure at a given time. It

is an “open” system, exchanging permanently

and regularly with both the cultural and biophysical components of the environment (11).

The analysis of the situational disablement

involves separate analysis of

1. the individual biomedical, psychological, and social process;

2. the disabling situations experienced by

the person or the group;

3. the environment of the system, assembling cultural, ecological, physical,

economic, legal, religious, administrative, and other as~ects (12).

This implies an internal and an external

equilibrium of the system. Situational disablement tends toward a balance between individual,

situational, and environmental inputs and outputs. This balance is necessarily readjusted from

time to time, sometimes frequently.

The model also implies the integration of the

individual into an environment and of the environment into the personal experience, but,

through the concept of situation, it allows a

differentiation of the individual experiences or

systems. Conversely, it would be inaccurate and

even dangerous to reduce the process of disablement exclusively to a situational experience by

erasing or ignoring the biomedical and psychological histo~ of the individual. If such a danger

remains theoretical in population surveys, for

instance, it might acquire practical importance

when action is implied, particularly by wellmeaning and over-enthusiastic institutions or

agencies concerned with the social treatment of

handicap.

The quality of life model

The term “quality of life” means different

things to different people, reflecting a wide array

of knowledge, experiences, perceptions, and values. Quality of life has been an implicit component of medical care since ancient times. More

recently, the increasing participation of patients

in health care has moved the center of determination of quality of life from the physician to the

person concerned.

Quality of life has often been a “catch”

expression not based on a precise definition. It is

usually admitted that quality of life is a multidimensional concept that covers several domains, motivations, or social indicators: functional

status (self-care activities, mobility, physical and

role activities); disease and treatment-related

symptoms; psychological functioning; social functioning; spiritual or existential concerns; safety

of the environment; adequate housing; decent

and guaranteed income; love, respect, freedom,

etc. It is usual to single out health-related quality of life (HRQOL), which can be defined as

“the value assigned to the duration of life as

modified by the social opportunities, perceptions, functional states, and impairments that

are influenced by disease, injuries, treatments,

or policies” (4).

Two conceptual frameworks apply to the

quality of life model:

12
. One is the ICIDH model, in which quality of

life appears to be closely related to the

dimension of handicap.

● The other is a concentric series of circles

determining successive boxes going from disease in the center, to personal functioning,

psychological status, general health perception, and social or role functioning.

The difficulty in this model lies in the interrelationship between the global assessment of

quality of life (for example, “How are you?”)

and the separate assessments of the components

of quality of life. This has led to the design of

composite batteries of measurements including

generic and disease- or condition-specific measures. Whatever the choice, the composite measures should be submitted to analysis by

components in order to consider the contribution of each concept or category to an overall

score.

Some objective and synthetic measurements

of fitness (defined as the positive nature of

physical activity), impairments, or functional limitations or activity restrictions are claimed to

approach or even to be representative of the

individual’s quality of life. In reality, the term

“quality of life” should be reserved to the subjective assessments by individuals, which have

been proved to be quite reliable. Quality comes

from the Latin “qualis” (translated “such”) and

means: that which makes or helps to make

anything such as it is. The life of a person is such

as to be defined, assessed, evaluated, by this

person first. This represents the particular operational difficulty of the quality of life model.

Operational considerations for the

assessment of disability and handicap

The four models of the disablement process

identified above are in fact complementary to

each other. It is possible to distribute and combine them along a uni~ing model (figures 14)

of the disablement process.

Environment

A ‘Ih

Etiology

+

Pathology

+

Handicaps

Diagnosis

\:~;~f%eath

m

Figure 1. A unifying conceptual scheme of the

disablement process

Environment

A ‘Ik

Etiology

+

Pathology

f Treatment

Handicaps

Diagnosis&

t\

Cured ~ ~ Death

Impairment

Dis%Iity~ I

I

‘Disability~

<rehabilitation Person I

Figure 2. The place of the treatment and of the

rehabilitation in the global scheme of disablement

In such a modelized construction, the role of

the environment specific to the person or to the

group, in its broadest meaning, appears to be

fundamental. It will be also noted that handicaps are multiple and that they may result from

one or several situations of everyday life, as well

as from one or several biomedical problems. The

medical or psychosocial rehabilitation procedures may alter the process in a positive way.

This scheme applies to developed, as well as to

developing, countries.

13
. .

EEl

m Bi3i~eydical ~ Situational

model

EZ ICI13H model ~ Quality of life

model

NOTE: ICIDH is International Classification of

Impairments, Disabilities, and Handicaps.

analysis of disablement, whatever the objectives of the analysis (population surveys or

censuses, consequences of diseases, elaboration of policies, etc.).

● The three-dimensional ICIDH concept is a

model for surveys of prevalence of disablement. Its usefulness for surveys of incidence

I

of disabling chronic conditions remains questionable: the linearity of the chain of causality along the three dimensions has to be

demonstrated, and the types of interdimensional transitions have to be defined.

● Disease and impairment are primarily the

concern of medical services. Disability and

handicap, which are the fundamental components of the process of disablement, are the

concern not only of rehabilitation clinicians,

but also of those professionals dealing with

Figure education, transport, housing, or employ- 3. The four theoretical models of the

disablement process along the conceptual scheme ment of disabled persons and above all of the

Some operational guidelines can be estabpersons with difficulties themselves.

lished from these conceptual models:

● Diagnosis, biomedical parameters, and health

economy indicators are useful but not suffi-

. The ICIDH concept constitutes the clearest, cient for the analysis and design of measurmost consistent, and cross-disciplinary con- ing instruments of the disablement process.

ceptual framework, a basis for common def- . Disease and disability have very different

initions and language, and a tool for the definitions. The existence of a particular

Population age composition

Family Environment Place of residence (rural or city)

Accessibility

Availability of community44’”

Etiology

based rehabilitation +D isease (lCD)

Type of services Pathology

+ Treatment (type, cost, duration

Visibility

Handicaps

Diagnosis

Availability of technical aids

Rehabilitation \DiJ$;l:;~~j~ratewith

(medical and psychological) ‘isability

Motivation m

chronic illnesses

) J

NOTE: lCD is International” Classification of Diseases.

Figure 4. Factors likely to modify the process of disablement

14
disease, whatever its potential severity, is not

always associated with a corresponding

disability. The same remark applies to the

comparison of the definitions of impairment

and disability.

● It should be recommended to classify or

define the Healthy Life Expectancy measuring instruments and surveys according to the

most suitable model to which they refer

(biomedical = class I or type I, for instance,

etc.). This would facilitate the comparability

of existing materials and the interpretation

of collected data.

Disability is measurable. Specific measuring

instruments exist, which give a score and a

profile of disability for each individual. It is

possible to determine function-related groups of

individuals, Handicap adds a degree of dependence, severity, and disadvantage to disability.

Disability is a predictor of the adjustment to

social life. Handicap is a component of the

adjustment to social life, Thus, the most reliable

indicators of disability at the present time (7)

are the activities of daily living and locomotion;

the most reliable indicators of handicap are

physical independence (to be distinguished from

autonomy) and mobility. Neither disability nor

handicap is value free, but handicap and quality

of life depend very closely and singularly on

cultural factors.

Handicap, and the self-assessed quality of

life related to it, are the combination of three

distinct elements:

● The consequences of diseases, impairments,

and disabilities

● The history (medical and social) of the person

● The relationship to the broadly defined

environment

Two of these elements are intrinsic to the

person, one is extrinsic. The permanent interrelationship between extrinsic and intrinsic elements is complex, and probably varies with

situations, tasks, places, etc.

It is of utmost importance to consider what

can modify the sequence of events and factors

which constitute the disablement process. Some

of the modifying factors can be identified

(figure 4):

The disease itself, as it is classified for instance in the International Classification of

Diseases (ICD). Each etiology, each pathology, has obviously its own handicapping potential. However, the age, the type of aging,

and some particular frailty have also an influence on the disablement process, beyond

merely initiating it.

The treatment: the type, amount, availability,

and side effects of treatments can alter the

course of the disablement process.

The survival rate with chronic illnesses or

impairments.

The motivation to live with an impairment

and/or to reduce the disability and the resulting handicaps. Motivation is certainly individual but may have sometimes collective aspects.

The rehabilitation work is aimed at preventing and reducing disability. It includes medical and psychosocial rehabilitation. Its

availability and type should be considered,

with particular attention given to the necessity and availability of technical aids. Considerable differences may exist between and

within countries. Developed countries try usually to rely more heavily on technical aids,

which are theoretically cheaper than human

assistance, but with limited success so far.

Visibility of disabilities and handicaps modifies substantially the whole process. This has

led to a general underestimation of the handicapping consequences of visceral disorders,

In less-developed countries, and for historical reasons in western countries, attention is

only or primarily devoted to blind or deaf

persons, amputees, or those with atrophies of

limbs, for instance.

15
The types of services

local government,

available, run by state or

or nongovernmental

organizations.

Community-based rehabilitation, proposed by

the WHO for the developing countries, is

applicable to developed countries, and particularly to elderly people. It relies on the

social interactions, within a geographic area,

of persons with various ties, and not only on

professional medical and psycho-social rehabilitation. The presence of such a structured

supporting network allows continuous rehabilitation work, sticking to the individual needs

and likely to modify positively the disablement process.

Accessibility: physical access to the environment, but also to services, benefits, etc. Accessibility is an important factor of adjustment

with handicaps, if they are considered as the

results of the encounters of persons and

environments, As such, it is a fundamental

component of the disablement process.

Famil’y: marital status, age, size, cohesion of

the family, composition of the family, degree

of acceptance of the family, the role assigned

to the family by the professionals and the

community: all these constitute a prime factor of integration at the outcome of the

disablement process (see, for instance, the

classical problem of families having to cope

with cases of dementia or stroke).

Demographical indicators, such as the population age-composition, or geographical factors

(rural areas versus cities, for instance): the

handicap resulting from urinary incontinence

is somehow reduced in villages in comparison

with big cities.

Synthesis and conclusion

The end results of the disablement process

can be analyzed in terms of disability and/or

handicaps. The best indicators are summarized

in the following table:

16

Disabiliy Handicap

Locomotion Mobility

Activities-of-daily-living abilities Physical independence

Communication/cognitive Social interaction

Among the dimensions of handicap, mobility

is certainly the least culture-bound, but nevertheless remains culture-bound to a certain degree. Compare, for instance, the mobility required

and expected from an old lady in Minnesota,

Florida, or New York City; or Denmark and

Sicily, two distant parts of the European Economic Community. Physical independence and

above all social interaction are more subordinate

to the behaviors, knowledge, know-how, and

abilities, which constitute the culture of a human

group or of a society.

Differences between countries in the field of

disablement are based not only on economical

development, but also on biophysical and cultural features, which determine for instance the

ratio between human and technical solutions.

International comparability goes with simplicity

of questionnaires (for example, four items, four

questions), Comparability within a country needs

more comprehensive, precise, and specific questionnaires.

Scores or their equivalent, although simple

to use and versatile, are less meaningful than

profiles. Disability and handicaps are in fact a

set of several components. The whole model of

the disablement process should be applied to

any disease, diagnosis, or symptom, with use of

each of its components. At each level of the

process, the interacting factors should be taken

into account, and the corresponding prevalence

rates calculated. This exercise applies to any

type of economical development, and constitutes

a set of tools for policymakers, as well as economists, clinicians, statisticians, or demographers,

Some research is being conducted in this direction, with fruitful results so far.

The disablement process is finally a synthesis

of medical, sociological, and anthropological
analyses made in the reality of human projects

and activities.

References

1. Fabrega H, Jr. The need for an ethnomedical

science. Science 189:969-75.1975.

2. United Nations. Development of statistical concepts and methods on disability of household

surveys. Studies in Methods: F(38). New York:

United Nations. 1988.

3, Wood PHN. Measuring the consequences of

illness, World Health Stat Q 42: 115–21. 1989.

4, Patrick DL, Erickson P, What constitutes quality

of life? Concepts and dimensions. Clin Nutr

7:53-63.1988.

5. World Health Organization. International

Classification of Impairments, Disabilities, and

Handicaps. Geneva: World Health Organization.

19s0,

6. Feinstein AR, Josephy BR, Wells CK. Scientific

and clinical problems in indexes of functional

disability. Ann Intern Med 105:413-20.1986.

7. McDowell I, Newell C. Measuring health: a guide

to rating scales and questionnaires. New York:

Oxford University Press. 1987.

8. Chamie, M. Survey design strategies for the study

of disability. World Health Stat Q 42:122-40.

1989.

9. Minaire P. La Classification International du

Handicap: avantages et limites. In: Handicap,

Famine, et Socitit~. Paris: IDEF. 33-38.1990.

10. Minaire P. The use of the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) in rehabilitation. Strasbourg:

Council of Europe. 1989.

11. Minaire P. Le handicap en porte-zi-faux, Prospective et SantE 26:39-46.1983.

12. Eibl-Eibesfeldt I. Human ethology. New York:

Aldine de Gruyter. 1989.

17
Chapter 5

Crosscutting issues on

long-term care: Introduction

by Diane Rowland, SC.D., Department of

Health Policy and Management, Johns

Hopkins University School of Hygiene and

Public Health

I am most pleased to be here with you this

morning and to moderate this panel on international studies of long-term care. My new responsibilities with the Kaiser Commission on the

Future of Medicaid will direct my work toward

analysis of the Medicaid program and the problems of the low-income population. As a result,

many people think that my work is primarily

with low-income families. Yet, next to Medicare,

Medicaid is our most important program for the

elderly population in the health care area, both

as the program that fills Medicare’s acute care

gaps and as the only program in the United

States that provides for long-term care coverage.

During the next 5 years with this new commission, I envision devoting a substantial effort to

looking at the way we cover long-term care

services for the elderly under our Medicaid

Program. I hope the Commission’s agenda will

build on the efforts of the Commonwealth Fund

Commission on Elderly People Living Alone,

whose work is now drawing to a close.

In the policy world in the United States

today, we have a growing interest in looking at

an international perspective and learning from

the experiences of other countries. It is with

great interest that I watch us looking at the

Canadian health system, the German health

system, and other international experiences as

we try and shape our acute care policy, Recently,

we have also begun to recognize that our longterm care problems are not unique in the world

and that we can learn much from the programs

of other countries. During the last 6 years, the

Commonwealth Fund Commission on Elderly

People Living Alone has tried to learn as much

as it could about the U.S. elderly population,

especially those who live alone, and has tried to

identify ways to improve their economic wellbeing and their health status.

In working with the Commission, we identified through many of the reports, studies, and

data tapes from the National Center for Health

Statistics the 9 million elderly people who live

alone within our 29 million noninstitutionalized

elderly population. We looked at the typical

elderly person living alone and found that she

was a widowed woman, often in her eighties,

generally struggling to make ends meet on a

meager income. We found that she was five

times as likely as her married counterparts to

live in poverty; and yet she only had a one in five

chance of getting cash assistance from the Supplemental Security Income Program, which is

the Federal cash assistance program designed to

help get the elderly out of poverty. We found

that being poor brought other problems as well.

The poor were twice as likely as those with

higher incomes to have serious health problems;

and yet, in the United States, the elderly poor

were those most often with the most inadequate

health insurance coverage. A third of the elderly

poor people are assisted by the Medicaid program to cover additional services and cost sharing under Medicare, a third have to buy private

health insurance supplementary coverage to help

19
with Medicare, and a third rely solely on Medicare. As a result, many of our elderly people are

driven into poverty by their medical expenses,

Studies by the Commonwealth Commission

showed that nearly one-third of those with incomes between 100 and 150 percent of poverty

were actually impoverished when their medical

expenses were taken into account, Being alone

also often meant being without family or friends

to whom one could turn for assistance with

long-term care needs. Without formal support,

those living alone were at high risk of losing an

independent lifestyle and having to go to an

institution.

Since its inception 6 years ago, the Commonwealth Commission has sought to document and

heighten public awareness of these serious problems and to develop recommendations to improve the economic well-being, insurance

protection, and at-home assistance with longterm care needs of the elderly population. As we

struggled to find innovative approaches to improve the life and economic and social wellbeing of elderly people, we have looked abroad

for options and answers to some of the dilemmas

facing the United States.

We have just completed an international

survey of elderly people living in the United

States, Canada, Great Britain, West Germany,

and Japan.

interviewed

Nine hundred elderly people were

in each of those countries to provide

a snapshot of the differences between the five

countries. We sought to learn whether the phenomenon of living alone that we saw in the

United States and its association with poverty

and the greater risk of health needs would hold

among the other countries. We asked about life

satisfaction, quality of life, and perceptions of

the adequacy of health systems, social security,

insurance, and long-term care systems.

The survey was in the field during the summer, We are now in the process of analyzing the

results. We hope they will give us some new

insights into the problems facing elderly people

in the United States and help us learn how

common these problems are across some of our

comparison countries. In conducting this survey

and now in trying to analyze it, we have become

increasingly concerned with the difficulties of

cross-cultural comparisons. The work of this

group and the work of this meeting are most

timely and important. Discussions such as this

will help to lay the groundwork for all of us to be

able to gain better insights into how to address

our health and social problems with regard to

the elderly population, as we work toward more

common definitions and a better understanding

of cultural differences among countries,

20
Chapter 6

Cognitive function and the

elderly

by Barry Gurland, M. D., Sidney Katz, M. D.,

Rafael A, Lantigua, M.D., and David E. Wilder,

Ph. D., Columbia University Center for

Geriatrics and Gerontology

For most patients, and for their caregivers,

the meaning of dementia, like any other disease,

lies in its impact on quality of life. Insofar as it

applies to problems of mental health, quality of

life has received detailed attention elsewhere

(l). Some of the quantitative methods presently

available for study of health-related impairments

in qualities of life will be applied in this paper to

the resolution of conflicts between reports of

rates of dementia (Alzheimer’s disease and related disorders) in the general elderly population.

Although the emphasis in this paper will be

on quantitative analysis, a few qualitative statements from clinical descriptions of the course of

dementia can help bring the issues into focus.

With specific reference to Alzheimer’s disease

and related dementias, threats to quality of life

are seen in the progressive loss of abilities required for self-direction and independence. Fear,

anguish, and despair may accompany the recognition of relentless deterioration. As the disease

advances, persons afflicted lose authority over

personal decisions and are exposed to a growing

risk of being wrenched from their accustomed

environment. There may be repeated blows to

the person’s self-esteem, aggravated by an undermining of respect and affection from others. A

heavy burden may be placed upon the caregivers. For all concerned, there is a drain upon

emotional and material resources that normally

would go to fulfilling more desirable needs.

This picture of the impaired quality of

inflicted by dementia is bad enough for

life

the

sufferer and caregiver, but it also looms large in

the minds of those who are not yet afflicted but

are growing older, and in the concerns of those

who must plan for the provision of formal care

for the victims of this condition. Policymakers

and planners are accordingly influenced to give

priority for research and service investment to

illnesses such as Alzheimer’s disease and related

dementias “that make life miserable for the

elderly” (2).

The size and distribution of the problem

posed to society and its members by impairments in quality of life associated with dementia

are usually estimated by turning to prevalence

and incidence rates of dementia. These estimates are often extended to the projected rates

of dementia over the next few decades. Whatever the magnitude of impact on quality of life

that is presently attributed to dementia, the

position is likely to be aggravated by the steep

rise in rates of dementia that is anticipated in

the next few decades. Nevertheless, considerable

uncertainties exist about the true rates of dementia that should constitute the multiplier effect in

drawing inferences about the impact of dementia on quality of life, either now or in the

foreseeable future.

Data on rates of dementia for the elderly

population residing in the community are conflicting; for example, there is substantial variation in the results (3) from 27 published

epidemiological

for moderate

studies that yield prevalence rates

and severe dementia in the

21
population 65 years of age and

range from 1.1 percent to 7.8

over. The rates

percent, with a

median of about 4 percent. In a more recent

report (4), Evans, Funkenstein, and Albert reported a prevalence rate of 10 percent for dementia among the general elderly population 65

years of age and over. Among those 85 years of

age and over, the rate is usually about 20 percent. But here again, there is a range of rates

with a high of 47 percent in the report just cited,

Furthermore, discrepancies in reported rates for

dementia have recently been shown to occur

when different screening techniques are applied

even to the same population (5). Probable dementia was determined by conventional cutpoints on five widely used screening scales. The

absolute and culturally relative rates varied

widely, depending on the scale applied.

Most projections of future rates for dementia

have been extrapolated from current age-specific

rates that are only half as high as some that have

been reported (that is, the projections may be

grossly underestimated, if certain reports are

taken as the current benchmark). To make matters worse, rates for persons 85 years of age and

over, which are less than half those recently

reported, contribute particularly heavily to projections into the future.

Breadth of concepts of dementia

A parsimonious explanation for differences

in reported rates for dementia is that different

concepts are at play: Some are narrow (more

stringent) and some broader (more inclusive) in

demarcating groups of persons with dementia.

Moreover, these various concepts of dementia

might carry very different implications for impairments in quality of life. Thus, there remains

great ambiguity about what it means for quality

of life that there may be, for example, twice as

many dementias among persons in the older age

group than previously accepted. It cannot be

assumed that twice as many is twice as bad. Yet

a perspective on the relationship between rates

22

for dementia and levels of quality of life should

(and does) influence the way aging is viewed and

services are planned.

These issues also have a bearing on diagnosis

of dementia in individual cases. The implications

carried by a diagnosis of dementia for the quality

of life of a particular patient may vary with the

concept of dementia used by the physician who

makes the diagnosis.

These and similar questions about the meaning conveyed by the diagnosis of dementia at an

individual and population level can be addressed

by operationalizing and applying to epidemiological data on dementia the concepts and language

of health-related impairments in quality of life.

This process will be demonstrated in the strategies for data analysis presented in this paper.

Data from a community survey

Narrow, broad, and marginal concepts of

dementia were examined in a large study of the

general elderly community population (6)

(N= 445 in New York City; N = 396 in London;

samples combined in these analyses), The narrow group fitted operational criteria (7) for a

clinically significant diagnosis (that is, having

relevance to prognosis and management). The

broad group was abnormal according to statistical classification (latent class analysis); this group

designates cases additional to the narrow group

but also includes nearly all those falling within

the narrow definition. The marginal group was

defined as those who were classified as broad but

not narrow. It is notable that the broad group of

dementias (N= 54) was about twice as frequent

as the narrow (N= 31), replicating the problem

of choosing between the previously mentioned

conflicting reports of prevalence rates in

dementia,

In examining the relationship between the

concepts of dementia on the one hand and

quality of life on the other, the marginal group

can represent that which is peculiar to the broad

as opposed to the narrow group,
Relationship to domains of quality of

life

The first domain in quality of life considered

here is the subjective sense of being able to gain

access to one’s memory store. The frequency

with which this quality of life domain is impaired

in the narrow and marginal concept groups of

dementia and in normal (that is, neither demented nor depressed) elderly persons is shown

in table 1, part A. The narrow-concept dementia

group tends to be uniformly worse off than the

marginals and significantly worse than the normals; the marginals are only variably worse than

the normals.

The next domain of quality of life examined

is performance in the activities of daily living

(table 1, part B). The narrow-concept dementia

group again tends to be consistently worse than

the marginals and significantly worse than normals. The marginal dementias are closer to the

normals than to the narrow-concept dementias

with respect to several dependency items (for

example, preparing own meals, dressing) and

intermediate between normals and narrowconcept dementias for other items (for example,

shopping, business); the marginals are significantly different from normals in only 2 of 11

items. This dimension affects the quality of life

Table 1. Comparison of narrow and marginal concept dementias in some quality of life indicators:

United States/United Kingdom community study

Percent with problem Significance’

(a) Narrow- (b) Marginalconcept concept (c) a b

dementia dementia Normals versus versus

Quality of life indicator (N=31) (N=23) (N=614) c c

A. Subjective memorv

B,

c,

D,

ls’impaired . . . ..~ . . . . . . . . . . . . . . . . . . . . . .

Impairment is a problem . . . . . . . . . . . . . . .

Impairment is embarrassing . . . . . . . . . . . . .

Dependency

Does almost no chores . . . . . . . . . . . . . . . . .

Can’t prepare own meals . . . . . . . . . . . . . . .

Difficulty putting on shoes . . . . . . . . . . . . . .

Difficulty dressing self . . . . . . . . . . . . . . . . . .

Difficulty grooming self . . . . . . . . . . . . . . . . .

Problems using bath or shower . . . . . . . . .

Others help with chores . . . . . . . . . .,0. . . .

Others do shopping . . . . . . . . . . . . . . . . . . .

Problems handling personal business . . .

Needs help walking outside : . . . . . . . . . . .

Needs help with toileting . . . . . . . . . . . . . . .

Subjective distress

Often feels lonely . . . . . . . . . . . . . . . . . . . . . .

Notenough energy . . . . . . . . . . . . . . . . . . . .

Sad ordepressed . . . . . . . . . . . . . . . . . . . . .

Almost nothing enjoyed . . . . . . . . . . . . . . . .

Lies awake dueto pain . . . . . . . . . . . . . . . .

Life notwotth living . . . . . . . . . . . . . . . . . . . .

Disturbing behavior

61

13

13

52

48

13

32

23

36

E

55

39

7

E

39

23

13

6

44

4

4

9

9

4

9

1?

35

61

30

22

4

0

1:

9

9

0

22

4

4

9

9

5

4

4

7

26

44

5

4

1

1;

15

3

5

1

Irritable, argues . . . . . . . . . . . . . . . . . . . . . . . 16 0 11

Noteating well . . . . . . . . . . . . . . . . . . . . . . . . 13 4 5

Forgets safety precautions . . . . . . . . . . . . . . 16 9 2

Sits around listlessly . . . . . . . . . . . . . . . . . . . 45 35 24

Sleeps 2 or more hours during the day . . 4 2

Medicine atnight tosleep . . . . . . . . . . . . . . 1: 17 12

(.06;

(.061)

+

+

+

+

+

+

+

+

(.06;)

—

—

+

+

—

—

—

+

+

+

—

—

—

—

—

—

—

—

+

+

—

—

—

—

—

—

—

—

—

—

lChi-square (2-tailed) with Yates correction has probability of <0.05.

NOTES: Combined sample N= 841 (New York City N= 445, London N= 396). Excluded here are persons with clinical levels of depression.

23
of the caregiver as well. Cases fitting the different concepts of dementia will likely affect the

caregiver in different ways and to a different

degree.

As can be seen in table 1, part C (subjective

distress), the narrow-concept dementias also tend

to be the most depressed. Two of the key mood

items (that is, concerning depression and enjoyment) are significantly more frequent in the

narrow-concept dementias than in the normals.

It is evident from this that dementias can talk

about their feelings. Overall, and perhaps surprisingly, the marginal dementias tend not to be

more depressed than the normals. Not a single

item of depression is more frequent in the marginals than in the normals. This runs counter to

the expectation that early or mild dementias are

more likely (than more advanced dementias) to

be aware of their declining abilities and thus to

be more depressed.

A selection of those behaviors characteristic

of dementia that might disturb the quality of life

of a caregiver is shown in table 1, part D. There

are different frequencies of these behaviors in

the two concepts of dementia: Mostly these

behaviors tend to predominate in the narrowconcept dementias. Two behaviors that can be

very troubling to caregivers (that is, regarding

safety and apathy) are significantly more common in the narrow-concept dementias than in

normals, There is no consistency, and no

statistically significant differences, in the relative

frequencies of disturbing behaviors between marginal dementias and the normals.

Data from primary medical care

(table 2)

The relation between breadth of concept of

dementia and dimensions of quality of life was

further examined in a sample of 205 Hispanic

patients in a primary medical care group practice (8). This study provides supportive evidence

of systematic differences between concepts of

dementia of varying breadth. Four levels of severity of dementia scores were selected on the

basis of a scale of cognitive impairment. Level 4

corresponds to the narrow-concept dementias,

and level 3 (again based on latent-class analysis)

corresponds to the marginals. Level 2 comprises

normals with poor cognitive function.

As seen in table 2, the narrow-concept group

of dementias tends to be more impaired than the

marginal group (as well as the normals with poor

cognitive function) in basic and instrumental

activities of daily living and also tends to be

worse off in three (subjective) dimensions: depression, sense of stress, and self-perceived

health. However, the only significant difference

between marginal dementias and normals is in

the activities of daily living. Severity of pain is at

Table 2. Comparisons of narrow and marginal-concept dementias in some quality of life indicators: Hispanic

cohort study

Percent with problem Significance

(a) (b)

Narrow– Margina/– (c) Poor

concept concept cognitive No;~a,~ a b c

dementia dementia function versus

Quality of life indicator

versus versus

(N=ll) (N=32) (N= 60) (N= 101) d d d

ADL or IADL impaired. . . . 45 33 25 + +

Depressed . . . . . . . . . . . . . . 45 24 30 1: + (.05J

Sense of stress . . . . . , . . . . 54 18 13 +

Self-perceived health..,,,

—

% 35 +

Severityof pain., . . . . . . . .

—

:: 42 38 3

lChi-square (2-tailed) with Yates correction has probability of c 0.05. None of the .sversus b or a versus c or b versus c comparisons are

significant.

NOTES: ADL is activity of daily living. IADL is instrumental activity of daily living.

24
about the same level of frequency for all the

groups. This latter finding might be expected

and thus may increase confidence in the other

findings.

Conclusions

The findings of epidemiological studies of

dementia should be interpreted in the light of

the concepts of dementia employed and their

implications for the quality of life of the patient

and caregivers. Data analyzed in this paper consistently indicate that a narrow (stringent, conservative) concept of dementia carries with it

more serious consequences for quality of life

than does a broader (more inclusive) concept.

This contrast is seen more sharply where the

nonoverlapping group of (marginal) dementias

is delineated for comparison with the narrow

concept.

Prevalence studies of dementia in the general elderly population, using the narrow concept described here, have produced rates in the

usual ranges found in the literature. It is reasonable to assume, therefore, that reports of higher

age-adjusted rates are a reflection of a broader

concept of dementia.

Thus the recent reports of an unexpectedly

high rate for dementias in the elderly population

give no cause for new and exaggerated apprehensions about the damage to quality of life caused

by this set of conditions. There need be no

change as yet in the current and future projected

rates of dementia, at least as it applies to the

concept of dementia that has conventionally formed

the empiric foundation for policy and planning of

services, for caregiver concerns, and for lay attitudes toward aging. This assertion is intended to

maintain that the current and projected magnitude of the problems imposed by dementia on

quality of life is great, but not outside the

challenge that society has already accepted as

feasible.

Documentation of the impacts on quality of

life inflicted by defined concepts of dementia

allows an informed

specific concepts for

selection to be made of

specific purposes. Reports

of exceptionally high rates of dementia can be

understood in terms of the quality of life implications and accepted or rejected in that light.

Similarly, differences between screening techniques in rates of classification of probable dementias can be interpreted and resolved in terms

of the breadth of concept of dementia entailed

and the quality-of-life impairments attached to

the particular concepts of dementia reflected by

the screening technique. Ambiguities surrounding the diagnosis of the borderline case of dementia can be correspondingly clarified. The

meaning behind these classificatory alternatives

can be seen through the application of qualityof-life indicators. The value of each alternative

can be portrayed, and a reasoned choice among

the alternatives can be made. Each concept may

have a unique usefulness.

Quality-of-life issues should be a main reference point in the consideration of planning of

policy, service programs or clinical management

for the care and relief of persons with dementia

and for support of their caregivers. Such planning will be more accurate and realistic where

groups of persons with dementia or its subtypes

are described in terms of quality-of-life consequences. An illustrative presentation of qualityof-life profiles in dementia groups reflecting

varying breadth of concept has been offered in

this paper. In order to allow due consideration

of quality-of-life issues in policy, planning, and

service, it should be ensured that the information on dementia generated in the health care

system by administrative, clinical, and research

reports includes state-of-the-art quality-of-life

indicators.

Acknowledgment

This work was supported by the Morris W.

Stroud III Program on Scientific Approaches to

Quality of Life in Health Care and Aging and by

Federal grant AG-07232.

25
References

1.

2.

3.

4.

5.

Gurland BJ, Katz S. The outcomes of psychiatric

disorder in the elderly: relevance to quality of

life. In: Birren J, et al (eds). Handbook of mental

health and aging, second edition, Los Angeles:

Academic Press. 230-48.1992.

New York Times, D1. March 13, 1990.

Jorm AF, Korten AE, Henderson AS. The prevalence of dementia: a quantitative integration of

the literature. Acts Psychiatr Stand 76:465-79.

1987.

Evans DA, Funkenstein H, Albert MS, et al.

Prevalence of Alzheimer’s disease in a community population of older persons. JAMA

262:2551-6.1989.

Gurland BJ, Wilder DE, Cross P, et al. Screening scales for dementia: Toward reconciliation of

6.

7.

8.

conflicting cross-cultural findings. Int J Geriat

Psychiatry. John Wiley & Sons Ltd. 7:105-13.

1992.

Gurland B, Copeland J, Kuriansky J, et al. The

mind and mood of aging: the mental health

problems of the elderly community in New York

and London. New York: Haworth Press. 1983.

Gurland BJ, Dean LL, Copeland J, et al. Criteria

for diagnosis of dementia in the community

elderly. Geront 22:180-6.1982.

Lantigua R, Gurland B, Teresi J, et al. The

CLIN-CARE: clinical epidemiology of impairments of quality of life: Hispanic elders in

hospital-based primary medical care. Submitted

for publication.
Chapter 7

Long-term care policy in

international perspective

by Patrick Hennessy, M.SC., Organization for

Economic Cooperation and Development,

Paris, France

Why the interest from the Organization for

Economic Cooperation and Development

(OECD)? The theme of this symposium, “Meeting the challenges of an aging world,” is central

to many of the social policy concerns of OECD.

For a number of years, OECD has been exploring and setting out the policy consequences of

aging populations (l).

We are approaching the midpoint of a century of change, from 1950 to 2050, during which

the proportion of the population 65 years of age

and over in the 24 countries of OECD will

increase from less than 10 percent to more than

20 percent. During the next 40 years, this aging

process is particularly marked by increases in the

numbers of the elderly 80 years of age and over,

in what has been termed the “fourth age.”

This is bound to have profound consequences for the programs that OECD countries

have introduced to improve the social conditions

and health care of the elderly. Relevant studies

that have been carried out by OECD in this area

include studies of the financing and delivery of

health care (2), of the reform of public pension

schemes (3), and of retirement-age policies and

practices (4), These are now being complemented by a comparative study of the long-term

care of frail elderly people.

What are the policy issues? It is remarkable,

given the considerable variation of the organization of welfare in OECD countries, that there

appears to be such a degree of consensus about

the central policy issue. Most countries are concerned about the extent to which publicly financed long-term care is provided mainly within

institutionalized settings, Care in an institutionalized setting is now generally seen as unsatisfactory in personal, social, and financial terms:

●

●

●

In personal terms, both because of the evidence that elderly people prefer to stay in

their own homes and because they frequently

become more rather than less dependent in

institutions.

In social terms, because this type of care

isolates many of the most elderly members

from the rest of society.

In finarzcial terms, because of the high cost of

institutional care to both the public purse

and to elderly persons themselves.

At the same time, there is a recognition that

for elderly people with high levels of disability

and personal dependency, the degree of personal care required can frequently not be provided, either by their family or by formal care

services, outside of a controlled setting. The

overall policy objective, therefore, is to limit the

need for admittance to such institutionalized

settings to a necessary minimum.

This raises a number of related policy issues

that the OECD project will address:

. What is the extent of informal care by families for their elderly members? Can its extent

be influenced by public policy? And, given

the need, within an aging population, to

maximize the potential of the younger population, should the policy goal be to encourage

or to replace family care?

● Many countries have invested

of formal home care services.

in an extension

To what extent

27
●

●

●

do these services, in addition to their undoubted effect in improving the quality of

life, have a substantial quantifiable effect on

the number of elderly people entering institutional care?

Is the home environment in which many

elderly people live part of the problem rather

than part of the solution? Could home improvements at limited cost help to reduce the

need for institutionalized care?

What are the implications for the institutionalized sector of a policy bias to home care? If

those entering such settings are the most

dependent elderly, is it likely that the frequently expressed hope of making care institutions more “home like” can be realized?

Finally, the OECD study will be particularly

concerned to explore the methods of funding

of care programs, both within institutional

settings and in community settings. In most

countries long-term care is primarily a public

cost, through direct provision, through

government-run health insurance, through

income-related compensation for poorer elderly people, or, more usually, some combination of these methods. Can private funding of

care, either through an extension of longterm care insurance or the release of housing

equity, help to reduce public costs and add to

individual choice? And can public policy objectives for long-term care be achieved if the

funding of care is largely through private

means?

Three examples of policy development

The timing of the OECD study is not coincidental. It reflects the extent to which this is a live

policy issue in many countries. Following the

initial establishment of welfare institutions in

the 1930’sand 1940’s, the development of longterm care has been largely incremental. Publicfunding mechanisms have similarly developed in

what has frequently been an ad hoc fashion to

meeting the needs of the moment.

28

In recent years, a number of countries have

embarked on fundamental reviews of this policy

area, with the aim of establishing greater overall

coherence. This has often been sparked by a

realization that current funding structures represented a perverse incentive by supporting institutional care more generously than home care

alternatives. It is an important role of OECD

studies to act as a kind of mutual learning

process through which countries can exchange

new ideas and the results of putting those new

ideas into practice. It will be a central goal of

this study to show what alternatives to institutional care have been introduced, and with what

success, and how countries have adapted existing

service structures to meet new objectives,

As an indication of the value of such a

learning process, let me briefly describe examples of policy development of three quite different countries that have recently reviewed the

direction of their long-term care policies and

arrived at surprisingly similar conclusions. The

three countries are Australia, Denmark, and

Great Britain.

Australia

Australia is an extremely large country with a

federal political system and a liberal market

economy. Its population, while growing, is relatively small in relation to the size of the country.

It is in comparative terms a young population, in

which, however, the proportion of elderly people

is growing considerably more rapidly than the

average. There was little government direction

of the development of long-term care, and a

large private nursing home sector grew up. It

was encouraged by federal funding, which fully

reimbursed nursing home costs.

From 1985Australia saw the introduction of

a new policy on care of the aged, with the aim of

limiting the nursing home sector and encouraging the growth of both home care services and of

congregate housing for the elderly as an alternative, Within the first 5 years of this policy, the
proportion of federal funding going to these two

alternative sectors has doubled, and the growth

in nursing home expenditures has been well

below the rate of growth of the elderly population.

Two important policy tools in achieving this

have been the establishment and monitoring of

overall planning totals for the number of nursing

home beds and the strengthening of preadmission assessment procedures (5).

Denmark

Denmark is, by contrast, one of the smaller

countries and characteristically for Scandinavia,

has a population in which the aging process is

far advanced and an integrated welfare system

in which government plays a major role as both

provider and funder, A policy review, which was

initiated in 1979, suggested that policy should

now pursue three goals: greater continuity in the

life of the elderly person, avoiding the disruptions caused by moving in pursuit of appropriate

care; greater self-determination in the outcome;

and a better framework for the application of

individual resources.

Again, a combination of restricting nursing

home entry and extending home care was pursued. From January 1988, no more nursing homes

will be opened. Many older nursing homes have

been demolished or rebuilt as apartments for

the elderly or as specialized units for small

numbers of demented elderly people. In many

local authorities, the basis of payment for care is

also undergoing change, with elderly people retaining their pension (previously largely withdrawn on admission) and paying rent for the

board and lodging aspects of the home. Personal

and nursing care are directly funded by

government.

There has been a considerable expansion of

community care, with the objective of having the

home of every elderly person at risk connected

to a 24-hour emergency call system. This is

linked to a home help service that is increasingly

organized in groups of 10 to 15 home helpers,

who work as a team looking after the elderly in

their neighborhood.

Again, two important policy tools have been

the use of overall planning controls on nursing

homes and strengthened assessment teams able

to use funding in a flexible way.

Great Britain

Great Britain is a relatively small country,

but with a long history of urbanization and a

population approximately 3 times that of Australia and 10 times that of Denmark. It also has a

long history of providing public institutions for

the care of elderly people.

With the extension of the welfare state in the

1940’s, this tradition of institutional care was

continued, with the provisions of long-term care

in hospitals under the National Health Service

and in residential homes provided by local authorities. However, during the next 30 years,

there was a considerable expansion of alternative home nursing and home help services from

the same two public authorities, By 1981, Great

Britain had a fairly low proportion of its elderly

people in institutional care.

The pattern of predominantly public provisions was altered in the 1980’s by the extension

of public funding for private nursing and residential homes. Public funding for private care expanded by a factor of 10, while the public

providers sought to reduce further their relatively expensive commitments to long-term institutional care.

Great Britain now had a mixed economy of

care, but the public funding of private care

extended only to institutional care and with

limited assessment requirements. There was concern that funding was now too heavily loaded on

29
the institutional option, and a report on community care by a prime ministerial advisor in 1988

was followed by a government white paper in

1990 setting out the principles of a new system

to be in place from 1993.

Under these new arrangements, elderly people entering a home will be responsible, as in the

new Danish scheme, only for paying, via their

pension, for the board and lodging element of

care. Local government social services departments will be responsible for the assessment of

needs and have discretion to fund either home

care services or the care element of institutional

care. The demand for nursing or residential

home places and, therefore, the size of the

sector will be largely set by the extent to which

assessment teams seek to make use of them.

In each of these three cases, from widely

different beginnings, we see the same policy

objectives of establishing a limit, based on essential need, for nursing home places; of an increased emphasis on imaginative home care

alternatives; and of a central role of assessment

teams in managing a more diverse system.

The future of the project

Preliminary results will be available for a

meeting of OECD social policy ministers at the

end of 1992, and a final report will be published

early in 1994, I would be delighted if you would

invite OECD to share the full results of this

project with you at your next symposium.

References

1,

2.

3,

4.

5.

Organization for Economic Cooperation and Development. Aging populations: the social policy

implications. Paris: OECD. 1988.

Organization for Economic Cooperation and Development. Financing and delivering health care:

a comparative analysis of OECD countries, Paris:

OECD. 1987.

Organization for Economic Cooperation and Development. Reforming public pensions. Paris:

OECD. 1989.

Organization for Economic Cooperation and Development, The transition from work to retirement. Paris: OECD. Forthcoming.

Howe AL. Outcomes of nursing home care in

Australia. (Delivered at this symposium).

30
Chapter 8

Crosscutting issues on other

international research on

aging: Introduction

by Gwendolyn S. King, Social Security

Administration

It is my pleasure to welcome you to this third

day of the conference, and it is my pleasure to be

a part of this final plenary session of the International Symposium on Aging.

When Dr. Feinleib invited me to participate

in today’s session, it struck me what a great

opportunity this symposium presents. Even

though virtually everyone of us, we citizens of

the world, will grow old and, therefore, have a

personal vested interest in knowing as much as

we can about the aging process, our collective

desire and quest for that knowledge have not yet

matched our actual need for it,

This is particularly true in the public policy

arena, where I spend my waking hours. We

spend a great deal of time in government, in

politics, talking about aging and the aged, debating what policies need to be established, what

programs need to be created, and what regulations need to be implemented in order to provide the best possible benefits for the people

who have reached retirement age. We debate

these issues. We propose solutions. We devise

programs and regulations, and we do so without

being as careful and meticulous and as curious

as we should be about the data that we use to

reach some of these important decisions.

As Commissioner of Social Security, I am

very sensitive to the misconceptions that exist

about the elderly and the aging process and the

potential ramifications that can result from those

misconceptions. That is why I value so greatly

the work that you perform at your respective

institutions and that you have been sharing here

this week.

My work, of course, leads me into the economic and financial aspects of the aging process.

Virtually every older American receives Social

Security benefits. Ninety-five percent of the

American public takes part in the Social Security

System – those who are paying into the system as

taxpayers as well as those who are currently

receiving benefits from it. There are over 40

million people on our roles, and that number is

going to be growing by 600,000 per year.

You may not be discussing in specific terms

social insurance programs for the elderly, but I

nonetheless have a very strong interest in the

ideas that you are discussing and developing in

areas such as health promotion, vitality, and the

overall well-being of the elderly. I believe there

is a very strong link, particularly among the

elderly, between financial security and physical

and emotional well-being.

One of the leading misconceptions, at least

in this country, about the elderly is that they are

generally well off. There is a widespread belief

that the elderly are more financially comfortable

than their sons and daughters, who may be

struggling to make ends meet. Those who harbor

that misconception generally fall into two schools.

One group takes a benign pleasure in the

fact that there are programs like Social Security

that take care of senior citizens and, therefore,

they do not have to worry about them, Then

there is a group that is more aggressive in its

belief that every dollar you spend on a senior

citizen is a dollar you take away from somewhere

else, and we ought

those resources.

to start pulling back some of

31
And both of them have this notion that

senior citizens are very well off. But if it were not

for benefits from the Social Security program,

benefits that are not making anyone wealthy, the

poverty rate among older Americans in this

country would escalate anywhere from between

10 and 15 percent to over 50 percent. That

illustrates the economic vulnerability of our older

citizens.

I found out very quickly, as Commissioner of

Social Security, how dangerous it is to believe

that everyone who is elderly in this country is

already receiving Social Security. There are thousands and thousands of older men and women in

the United States who are eligible for supplemental security income, a program that pays

benefits to people who are elderly, blind, and

disabled, with little income or assets.

There are people who are not receiving these

benefits because they have not applied for them,

They are doing without benefits that could provide them the basics of food, clothing, and shelter. At Social Security, we are making a

concentrated, aggressive effort to find those senior citizens, people who are disabled and who

have very low income, and get them the benefits

to which they are entitled.

We are succeeding to some degree, but the

relative invisibility of some of these citizens tells

us just how difficult our job is. Many of these

people may have lived their entire lives in the

United States and may not be able to speak

English. So it does not do us any good to publish

fancy pamphlets in English to send out to people

who do not speak English. Many of our senior

citizens who are in this category have never

learned to read and, therefore, fancy pamphlets

again do not do the job. We have a very extensive

outreach effort using people to carry our message, the message that if you are elderly and

low income, you may be eligible for our

program.

Then there is an issue that is of great concern to me, an issue you can help me address.

That is the plight of elderly women in this

country. By the year 2000, there will be an

estimated 19 million older women in the United

States, and they will make up a majority of this

Nation’s elderly population. There is also the

strong likelihood that they will have a very

difficult time in their old age because of factors

like low-paying jobs, lack of pensions, widowhood, and the time they take away from a career

in order to raise a family or give care to an

elderly person.

The financially poorest demographic group

we serve at the Social Security Administration is

older women living alone. I would be interested

in seeing greater study and attention given to

these women and how strong a connection exists

between their financial plight and what they

experience in terms of chronic illness and decreased lifespan,

As our nations continue to age, there is so

much more we need to know about aging and

the aging process. As we debate public policy

about economic security programs like Social

Security, about health care assistance programs,

long-term care, and the types of medical assistance most suited for and needed by the elderly,

we need to be guided by more than feelings and

political pressures. We need to be guided by

knowledge and information. As one who has the

responsibility to implement public policy, I respect and value very greatly the guidance you

will be providing.

With the knowledge you develop and disseminate, we can begin to do away with the myths

and misconceptions we have about the elderly,

We can begin to better understand the real

needs that exist among older Americans, and we

can do a better job of anticipating the needs that

will arise in the remainder of this decade and in

the next century.

32
Chapter 9

International research on

healthy life expectancy

by George C. Myers, Ph. D., Center for

Demographic Studies, Duke University

My presentation on this, the third day of the

symposium, provides an opportunity to reflect

on earlier presentations and to discuss some

points that reflect both prior thought and knowledge acquired at this meeting. It also enables me

to present information about several international programs that are in process that complement in important ways the ICE program. I will

specifically discuss the activities of the International Network on Health Expectancy and the

Disability Process (known by the French acronym REVES), the series of 13 studies conducted

in three World Health Organization (WHO)

regions, and the WHO Program for Research on

Aging (PRA) plans for studies on the Determinants of Healthy Aging. Dr. Maggi, in the next

presentation, will present other information about

the overall PRA research program. And finally, I

will discuss how I see research evolving on

health and health care of the aging in the decade

before the next millennium.

The REVES International Network was organized in 1989 by representatives from the

French National Institute on Health and Medical Research (INSERM); the Conseil des Affaires Sociales, Quebec, Canada; the headquarters

of WHO; and the Center for Demographic Studies of Duke University. Jean-Marie Robine of

INSERM has been the coordinator of the Network, It consists of more than 108 researchers

representing 73 research and statistical offices in

17 countries and 4 international organizations,

Joan Van Nostrand has been the National Center for Health Statistics (NCHS) representative.

The main activities of the Network are organized around twice-yearly workshops that have

been held in Quebec City; Geneva; Durham,

North Carolina; and most recently in Leiden,

The Netherlands. Future workshops are planned

for Ottawa and Montpelier, France, in 1992.

Proceedings of these workshops are in process

and, in addition, two bibliographies and Statistical World Yearbooks have been published,

From the outset, the Network has been

bonded by a desire to coordinate and standardize actuarially based measures of healthy life

expectancy (variously termed “active” or

“disability-free” life expectancy). The guiding

principle behind these efforts is that such measures provide an important means of assessing

aggregate levels of individual functioning over

time and among important subcategories of the

population. As such, measures of this type may

be viewed as important indicators of one of the

main components of health status and one that

can complement aggregate measures based on

morbidity or mortality. Recognition of this fact

can be seen in the introduction of such measures

in the 1991 WHO 3-year monitoring report on

the “Health for All by the Year 2000” strategy,

in which Target 4 notes that “the average number of years that people live free from major

disease and disability should be increased by

10 percent” (l). Whether this is a meaningful

target remains to be seen, but it does indicate

the growing use of such measures. A like objective using healthy life expectancy is also included

in the U.S. national health promotion and disease

33
prevention goals for the year 2000, as we were

informed the other day.

The goals of the Network set forth before the

first Workshop were the following:

To consider conditions necessary for comparing various measures of Health Life Expectancy (HLE), with a particular view to

international geographic comparisons

To consider means of interpreting chronological series of HLE measures

To examine uses of HLE in sociohealth planning and organizations

To examine the possibilities of procedural

standardization of data collection and calculation of HLE

These are goals that are shared by many

activities in the ICE project.

Each of the workshops has been designed to

emphasize different themes, such as time-series

research, geographic variations, measurement

concerns, and policy implications. From these

workshops has come a growing body of data on

measures of healthy life expectancy from an

increasing number of countries and across many

time points. The last meeting included presentations of such data for Taiwan, China, Sweden,

Switzerland, and Myanmar to mention only a

few countries. Such data are compiled by

INSERM and are now available in a Statistical

World Yearbook (2). Most of these measures

reported to date have been calculated using the

so-called “Sullivan method,” named for a former

staff person of NCHS, who first proposed such

measures (3). However, a major priority of

REVES, as noted earlier, has been the assessment of alternate procedures for calculating

healthy life expectancy.

As is true of most international collaborative

activities, there have been organizational and

thematic modifications that have evolved over

the past few years. Most importantly, discussions

have led toward the creation of subcommittees

to address underlying issues related to the

34

measurement of healthy life expectancy. These

now include groups dealing with the following:

●

●

●

●

●

Conceptualharmonization– especially concerning the use of the WHO International Classification of Impairments, Disabilities, and

Handicaps as a conceptual framework and

classification device. Dr. Minaire’s earlier

presentation reflects upon some of these efforts, which also include activities related to

measurement instruments.

Mental deterioration– assessment of appropriate measures of cognitive functioning, dementia, and behavior disorders

Use of national health surveys– for both temporal and comparative analysis

Research designs–particularly the use of longitudinal and panel studies

Policy relevance– how results may be translated for policymakers

In my view, the major accomplishments of

REVES to date have been threefold:

1. It has emphasized the importance of various

measures of healthy life expectancy as aggregate indicatorsthat are appealing to researchers and meaningful for policymakers in

tracking developments within countries over

time and among subgroups of populations,

Moreover, comparisons among countries allow us to assess whether improvements in

life expectancy are accompanied by increases in healthy life expectancy, the dimensions of which were laid out in the survival

curve presentations made earlier. This can

lead to important theoretical insights into

societal disability transitions that may be

associated with demographic and epidemiologic transitions. These efforts should be

seen as highly corn- elementary to those of

the United Nations Statistical Office in developing and disseminating international statistics on disability– the so-called

DISTAT program (4).
2.

3.

REVES from the outset has been concerned

with international standardization of concepts, measurements, and calculations that

can enable us to make comparative analyses.

Not the least of these efforts has been the

evolving attention given to national and regional longitudinal studies that permit us to

improve the calculations of HLE and examine more fully the processes that underlie

changes in health statuses during the course

of life, especially in later life.

WHO regional studies

Next, I would like to turn our attention to a

series of country studies sponsored by the WHO

regional offices. These Epidemiological Surveys

of Health and Aging have been coordinated by

Dr. Gary R. Andrews, Centre for Ageing Studies, Flinders University, South Australia. The

Duke University Center for Demographic Studies has been involved in some comparative studies of data from these studies. A major feature

of these studies, which have been conducted in

13 countries, is the use of comparable research

designs in terms of age range, questionnaire

content, field procedures, and data processing.

The surveys have been completed in the following countries:

Western Pacific Region (WPRO)

Fiji

Republic of Korea

Malaysia

Philippines

Eastern Mediterranean Region (EMRO)

Bahrain

Egypt

Jordan

Tunisia

South East Asia Region (SEARO)

Myanmar (formerly Burma)

Democratic People’s Republic of Korea

Indonesia

Sri Lanka

Thailand

The fact that these studies were deemed

sufficiently important to be undertaken and their

successful completion indicates the growing attention that aging concerns are receiving in

developing countries. Preliminary analyses from

the studies reveal that health and related issues

are of major importance for older persons even

in countries in which the percents of such persons in the total populations are relatively low

compared with those in more developed countries. The rapidly growing numbers of older

persons in developing countries, produced in

large measures by large entry cohorts and improved survival to older ages, presage significant

emerging problems in health care demands and

pressures on traditional family support systems

for older persons. These demands are particularly onerous for countries facing strong competing demands for scarce resources. Of paramount

importance are issues arising from changes in

family and household structures and population

redistributions within these developing countries.

Levels of HLEs for these countries are shown

by the data presented in figures 1-4. They reflect

the proportion of years of life expectancy free of

six personal (Katz-type) activities of daily living

(ADL’s), based on prevalence rates for persons

who cannot perform the task or who need assistance in the task. In the absence of up-to-date

life tables for many of these countries, life expectancies at age 65 were derived from contemporaneous life tables supplied by the Center for

International Research of the U.S. Bureau of

the Census. Sullivan-type calculations were employed. The analyses were jointly prepared with

Vicki L. Lamb.

Life expectancies of males at 65 years of age

range from a low of 9.4 years for Fiji to a high of

14.6 years for Sri Lanka (figure 1). The proportions of remaining lifetime at age 65 consisting

35
● Tunisia ● Sri Lanka

● Bahrain

o Jordan

● Philippines

● Thailand

● DPR Korea

● Myanmar ● Indonesia

● Malaysia

● Republic of Korea

● Egypt

● Fiji

I I I 1 I I I

) 40 50 60 70 80 90 100

Percent of healthy life expectancy

NOTE: DPR is Democratic People’s Republic.

Figure 1. Life expectancy of males at age 65 years and percent of healthy life expectancy.

17

16

[

Sri Lanka ● ● Bahrain

~

m DPR Korea ●

● Thailand

:15

CO ● Republic of Korea

● Tunisia

al

%14 1- . Jordan

-’11

t

. Philippines

● Myanmar ● Malaysia

● Indonesia

● Egypt

● Fiji

101 1 I I I I I I

30 40 50 90 100

Percent o%ealthy lif~~xpectanc~”

NOTE: DPR k Democratic People’s Republic.

Figure 2. Life expectancy of females at age 65 years and percent of healthy life expectancy

36
13 –

Philippines

11 –

mal

=9 —

z

.Tunisia

7 –

Females

NOTE: DPR is Democratic People’s Republic.

Figure 3. Healthy life expectancy of males and

females at age 6S years

100r Thailand /

/

lndonesia~

DPR Korea.

Philippines \

Republic of Korea Malaysia

‘/Sri Lankao%@\ ● Myanmar

Egypt Q

Fiji . Jordan

Bahrain

/

.Tunisia

/

40

t/

30~

30 40 50 60 70 80 90 100

Percent of females

NOTE: DPR is Democratic People’s Republic.

Figure 4. Percent of healthy life expectancy of

males and females at age 65 years

of healthy life expectancy reveal considerably

more variation among countries. The Eastern

Mediterranean countries show lower proportions of life expectancy free of disability, whereas

many of the Asian countries have very high

ratios. Indeed, the latter figures are considerably

higher than those that have been reported previously for more developed countries. Figure 2

shows even more variation in ratios of healthy

life expectancy for females than for males, along

with higher life expectancy as expected, but the

relative ordering of countries is much the same

as that for males (figure 1).

Comparing male and female healthy life expectancy (figure 3), the distributions show slightly

higher levels for males than for females in Tunisia and the Philippines, but lower levels in the

other countries. The ratios of life expectancy j?-ee

of disabilip, in contrast, show male superiorityfor

all but two countn”es (figure 4). Thus, females

tend to live longer, but a higher proportion of

these years are spent in disability states. These

findings are quite comparable to those reported

in more developed countries.

These analyses provide only initial findings

from the set of country studies. Further research

that is ongoing will treat instrumental activity of

daily living (IADL) measures, where appropriate, as well as ADL measures and the existence

of co-disabilities. An interesting feature of the

studies in three Southeast Asian countries was

the use of performance tests, based on procedures

used in the Establishment of Populations for

Epidemiologic Studies of the Elderly (EPESE).

Comparisons of the results from such measures

with ADL measures should prove quite instructive. In addition, separate analyses of various

ADL and IADL measures are being made, covariate analyses with important characteristics of

the population, along with multivariate studies

of relationships with related health conditions,

physical, and mental statuses. Preliminary results indicate relatively high levels of physical

impairments; sensory problems, especially sight

and hearing; and considerably high levels of

dental prosthesis that affect satisfactory

behavior. The prevalence of some of

eating

these

37
problems appears to exceed those that have

been found in developed countries, although

interestingly, self-assessed health levels appear

to be comparable tothose foundin more developed countries. The existence of considerable

variations between countries and regions in agedistributed patterns of disabilities and associated health states suggests that there are

characteristic disability transitions. The modeling of these cross-sectionally determined national patterns will be a first step toward

developing temporal patterns that are linked to

overall demographic transitions in the process of

socioeconomic development.

This program of cross-sectional national studies has demonstrated, as noted previously, the

wide national interest and feasibility of conducting such studies in developing as well as developed countries. These studies also provide

evidence that the means for measuring important epidemiological and socially based dimensions of health status and functioning can be

reasonably applied in such countries, with due

consideration to cultural differences that require

certain modified procedures. Finally, the data

from studies of this type can yield both crossnationally valid indicators of healthy life expectancy and, through multivariate analyses, greater

understanding of the correlated factors involved

in these states.

WHO determinants of healthy aging

studies

Since the creation of the WHO Program for

Research on Aging in 1987, with a unit attached

to the U.S. National Institute on Aging, there

has been an interest in conducting a series of

studies of the health status of older persons as

one of its three main programs. A steering

committee meeting was convened in 1988 in

Hawaii to formulate such a program. In spite of

some difficulties encountered initially in this

particular project, plans are

complete a research plan. 1

moving ahead to

can relate some

points of agreement from previous meetings and

my own personal feelings about these developments.

There was earlier consensus that it would be

desirable to have the studies conducted in both

less and more developed countries, that the

design should be longitudinal, and that the studies should lead toward greater understanding of

the relative health and functioning status of

older persons, of changes over time in these

statuses, and of factors determining these states.

To assess the states and their transitions, it was

agreed, would require standardized procedures

for obtaining assessment of individuals in the

multidimensional aspects of their health, social,

and economic well-being. Another aspect of the

research design that was given support was the

desirability of obtaining biomedical data through

limited clinical examinations, even in the developing countries. Finally, serious consideration

was given to the idea of obtaining information

from other family members, especially of a primary caregiver in situations in which long-term

care is being provided,

Although not an explicit feature of the PRA

program, it was noted that a registry of crossnational research would be maintained. This

could be an important aspect of the activities of

PRA in following the development of longitudinal studies of older persons being conducted or

planned in other countries and in offering assistance for some coordination of these studies.

Indeed, one could envision a two-tier series of

coordinated research activities, one that would

involve more centrally designed national studies

and another that would include community or

regional studies that are not intended to be

nationally representative. In this regard, I would

note that longitudinal studies are being conducted or planned in Canada, Australia, Japan,

-(

38
Taiwan, China, Israel, and several European

countries; and many of these are being funded in

part by the National Institute on Aging.

Such a research program can represent an

evolution in the way age-related changes in

healthy life expectancy are conceptualized and

studied, The PRA project distinctly builds on

prior efforts but offers an opportunity to integrate features of them in important new ways. In

the remainder of my presentation, I would like

to present my views on these developments.

Conceptualization

A new paradigm is emerging in how aging

processes are conceptualized within the framework of longitudinal investigations, especially

cross-nationally. Note that I already am positing

that prospective research designs are crucial for

furthering understanding of these processes.

There have been two perspectives that have

dominated our thinking on these matters. One,

that probably owes its origin to a biological

viewpoint, can be termed the “normative,” in

which it is believed. that individuals are programmed in certain ways and experience gradual

deficits with advanced age. Interestingly, this

view also has been embedded in most psychologically oriented longitudinal research, from programmed childhood maturation to senescence

later in life. A second perspective, closely associated with a medical or epidemiological view,

has an “outcome” orientation, in which risk

factors are assessed that may eventually lead to

certain endpoints, such as manifestations of specific diseases or death. Both perspectives may be

quite broadly conceived in ten-m of considering

the varied elements that may be involved in the

aging process. However, both view the underlying processes in a deterministic way and the

mechanisms are generally regarded as universal.

Rowe and Kahn (5) introduced a distinction

between successful and usual aging, which would

lead researchers to forego the search for simple

effects of the aging process and to give explicit

consideration to heterogeneity and the role of

possible interventions. However, from their formulation it is difficult to see how successful or

even usual aging can be assessed, except in some

subjective or residual manner. Moreover, it is

clear that such efforts measure trajectories that

may change over time as interventions and

changes in risk behavior are modified. Another

recent effort to clari@ what is involved in the

process of aging has been made by Fozard,

Metter, and Brant (6). They stress the importance of diseases themselves in modifying the

aging process and, thus, the need to consider the

interactions between pathological and nonpathoIogical processes. Both of these formulations are

of considerable merit, but they still are wed to

the belief that there exist some universal, but as

yet unmeasurable, dimensions of the so-called

aging process.

A new paradigm appears to be emerging that

emphasizes the importance of examining the

transitions between various states of health and

ill-health, as well as disabilities, that may or may

not lead to death, the absorbing state. Such a

view does not neglect the importance of ascertaining the determinants and correlates of relatively healthy life states, but it does acknowledge

the complex processes involved in alterations to

these states as people age. The factors involved

in the changes include the role of comorbidities;

nondisease events; non-life-threatening health

problems; environmental and situational conditions; and the role of interventions, such as

behavioral modifications, medical care, and other

formal and informal caregiving. In short, in this

perspective, attention is directed to states of

health and ill-health (including disabilities), events

that may modify these states, and the age and

duration-dependent nature of these complex

processes.

Methodological considerations

Longitudinal studies that focus on these aspects of the new research paradigm must be

39
I

designed to determine not only static-state conditions but also the precise timing of events that

may have brought about any changes in status.

To do so does not mean the abandonment of

fixed interviewing schedules at specified points

in time but the implementation of modules that

would enable the researcher to investigate the

determining factors within waves that have led

toward changes. Although this perspective might

be considered to be longitudinal in the long

term, there also is explicit attention to interwave

alterations, their determinants, and consequences. A focus on these interval events would

reduce problems of recall error that have limited

purely retrospective studies. Other information

derived from linkages with administrative or

physician records could also provide important

additions to establishing changes in states and

their determinants.

There are a number of technical issues that

could contribute in innovative ways to the design

and conduct of longitudinal studies. I will summarize some of these points.

●

40

There has been widespread development toward a focus on the context of family and

household dynamics in affecting individual

states and behavior. For example, one can

note joint husband-wife effects on retirement

decisions and the interactive aspects of other

life course decisions. By analogy, it can be

suggested that greater attention should be

devoted to the family context as it affects

health behaviors, states, and outcomes. A

shift of focus from the individual to broader

contexts of the family would lead to greater

use of multiple respondents within families

in surveys, especially longitudinal studies. Far

too little attention has been given to the ways

in which multiple risk factors of family members affect individual outcomes (nutrition,

smoking, etc.); the interactive aspects of joint

decision-making on health care–seeking behavior and compliance; and long-term care

decisions, arrangements, and outcomes. Interviewing of multiple persons in a household provides additional information that can

be used for more precise assessment, crossvalidation, and determining more fully the

situations facing individuals in which decisions are made. It also can be used for

establishing a sound basis for obtaining information from proxies in subsequent waves

and, indeed, information about fatal episodes. In these regards, the flexible use of

alternative schedules permits us to obtain

data from individuals (for example, frail persons) who may be unable to participate fully

in the interviewing process.

● A major issue that has bedeviled surveys of

older persons generally has been the high

levels of nonresponse. It is clear that maximizing response rates has to be given higher

priority than it has been traditionally. The

New England Research Institute (7) has suggested several steps that can assure this objective. They include using experienced field

staff to foster respondent identification with

the project, use of mixed-mode techniques in

data collection, employment of comprehensive field-tracking procedures, home-based

collection of physiologic data, and careful

selection of proxies when appropriate.

● The appealing use of computer-assisted interviews in data collection and entry of data also

has received considerable attention of late.

Noteworthy in this respect has been the use

of computer-assisted personal interviewing

(CAPI), which makes use of laptop computers. These procedures have proved effective

in improving the burdens of intricate interviewing (for example, skip patterns), ensuring that valid data entry occurs, and in the

virtual elimination of coding errors. The interactive capacity of CAPI makes it possible

to call up previous information from earlier

interviews. These technical developments
could prove to be particularly effective in

field studies conducted in developing countries, where inexperienced and inadequate

infrastructures often exist.

Analytic aspects

It should be clear that many of these features

of a new perspective on longitudinal studies of

the process of aging rest on analytic developments that make it possible to analyze such data.

Event history analyses, multistate life tables,

and other multivariate procedures, such as the

grade-of-membership approach, provide analytic

strategies that are particularly effective in examining both the dynamics of changes in discrete

and continuous-state and time-continuous models and in covariate structural models. These

more fine-grain models of transitions, as Manton

(8) points out, enable us to simulate the effects

of interventions on life expectancy and various

levels of healthy life expectancy. Without appropriate data, such modeling is limited, and, thereby,

our capacity to evaluate the kinetics of the

multidimensional aging process that involves risk

factors, immediate states of disease and disability, the effects of interventions and, eventually,

death, The survival models implied by calculations

of various aspects of healthy life expectancy

provide a readily understandable means of comparing countries at varying stages of epidemiologic transitions. Focusing on transitions and the

crucial components of these transitions and their

covariates permits us to disentangle the underlying changes and allows

be made of future levels

Acknowledgment

more valid forecasts to

and their consequences.

I would like to thank Gary R. Andrews and

Vicki L. Lamb for their helpful comments on

this paper and the statistical material presented.

Grants from the National Institute on Aging – RO1 AG08523, “A Collaborative Study of

Aging in the US. and Australia,” and RO1

AG07025, “Forecasting Life Expectancy and Active Life Expectancy,” provided support for this

presentation.

References

1.

2.

3.

4.

5.

6.

7.

8.

World Health Organization, Regional Office for

Europe. Targets for health for all. Copenhagen.

1985.

INSERM. Statistical world yearbook. Retrospective 1991 issue. Montpelier, France. 1991.

Sullivan DF, A single index of mortality and

morbidity. HSMHA Health Reports 86:347–54.

1971.

United Nations. Disability statistics compendium. STIESAISER. 4/41New York. 1980.

Rowe JW, Kahn RL. Human aging: Usual and

successful. Science 237:143–9. 1987.

Fozard JL, Metter EJ, Brant LJ. Next steps in

describing aging and disease in longitudinal studies. J Geront: Psych Sci 45(4) :P116-27. 1990.

The New England Research Institute. Maximizing response rates. Network 1–2. Fall 1990.

Manton KG. Mortality and morbidity. In: Binstock RH, George LK, eds. Handbook of aging

and the social sciences. San Diego: Academic.

64-90.1990.

41
Chapter 10

World Health Organization

Program for Research on

Aging

by Stefania Maggi, M.D., M.P.H., National

Institute on Aging, National Institutes of Health

The World Health Organization’s (WHO)

efforts to address the health problems of the

aged began in 1979 with the adoption by the

WHO Assembly of its first resolution targeted to

health care of the elderly, which resulted in the

establishment of the Global Program for Health

of the Elderly (l). Since then, many activities

have been developed in collaboration with the

member governments to address the problems

associated with aging. The goal is to promote

health and well-being throughout the entire life

of the individual and to find meaningful solutions to secure comprehensive care services for

the elderly, Cross-national research has been

shown to be a powerful method of identi~ing

special, as well as universal, risk factors in disease and disability as well as protective factors

that lead to healthy and productive aging. A

major challenge to social and behavioral investigators is how to employ their results to optimize

the potential of older persons to perform rewarding roles in society. Such research can benefit

older persons in developed and in developing

countries of the world (2).

An important step to promote the cooperation of scientists to the accomplishment of the

objectives of the Global Program was the agreement (signed in June 1987) between WHO and

the U.S. National Institute on Aging to host the

research component of the Global Program on

the campus of the U.S. National Institutes of

Health, An extensive presentation of the WHO

Program for Research on Aging (PRA) has been

published (3), so it will be reviewed only briefly

in this presentation.

The four priority areas selected by the Global Advisory Committee for Health Research

are:

. Age-associated dementia

● Osteoporosis

. Determinants of healthy aging

. Immunological changes with aging

For each project there is a coordinating center responsible for tasks such as translation of

the protocol, preparation of manuals for quality

control, training, and data management and

analysis.

Participating countries are chosen to ensure

a wide range of cross-national variation in the

variables of interest. In addition, academic infrastructures, experienced investigators, governmental support, and stability are necessary to carry

out the studies.

Parallel studies are encouraged by PRA based

on the following criteria agreed to by the steering committees:

. The proposal for the parallel study has to

undergo a peer review and be approved.

. The Centers carrying on the parallel study

must be financially self-supported and must

have all infrastructures needed for the successful completion of the project.

. The instruments adopted should be the same

as those used in the WHO participating

centers.

43
The clinical investigators

documentation on clinical

should exchange

cases and participate in exercises to ensure agreement on

diagnosis of specific conditions.

The investigators should participate in a common training session, organized by the coordinating center and the PRA office.

The investigators should be willing to share

the data collected with the coordinating

center.

Project on age-associated dementia

Population-based data on age-associated dementia are not yet available from developing

countries, nor are the risk factors well identified

(4).

The principal research goals of the study can

be summarized as follows:

●

●

●

Standardization and validation of research

instruments for cross-national diagnosis of

dementia and dementia subtypes

Comparison of age- and sex-specific prevalence ratios and incidence rates of dementia

across developed and developing countries

Assessment of prevalence and distribution of

risk factors across countries

The research project is envisioned in three

parts:

. Preliminary phase

. Pilot study

. Field study

The preliminary phase consists of the standardization of the clinical diagnosis of dementia

across centers, training of clinicians and epidemiologists, and validation of the screening instruments. The first step in the validation of the

screening instruments is their harmonization,

now ongoing in each participating country. The

protocols have been translated and adapted to

the local cultural conditions. These will be pretested in the local populations early in 1992 (in

Canada, Chile, Malta, Nigeria, Spain, and the

United States).

44

A 100-subject pilot study will be carried out

in each participating country to test the feasibility of the study procedure and to validate the

screening instrument in terms of sensitivity and

specificity using the clinical diagnosis as the gold

standard. Two screening tests, the Mini–Mental

State Examination (5) and the Information–

Memory-Concentration Test (6), will be used.

Only one will be selected for the field study on

the basis of the best accuracy. The cutoff scores

will be selected according to the definite balance

between sensitivity and specificity that might

lead to different cutoff points among the participating countries and age groups.

The field study will be conducted as follows:

Time one – to screen for cognitive impairment and to identi~ dementia cases that will

yield the prevalence ratio and the assessment of

risk factors. The target population is a random

sample of individuals 65 years of age and over,

both free-dwelling and institutionalized. The sample size for each center is 5,000 subjects (2,500 in

rural areas and 2,500in urban areas.)

Time two (l–2 years after Time one) – to reassess the same population in order to identi~

incident cases of dementia.

A multiphase procedure will be used for case

identification and diagnosis, as shown in figure 1:

Phase one – the screening test for cognitive

impairment, the Instrumental Activity of Daily

Living Scale (7), and a risk-factor questionnaire

will be administered by trained interviewers to

5,000 subjects. The risk-factor interview includes

putative risk factors for Alzheimer’s disease (dementia or Down’s syndrome in relatives, parental age at subjects’ birth, head trauma);

sociodemographic features (age, sex, race, ethnicity, marital status, residence, living in institutions, education, occupation); and risk factors

relevant to vascular and other dementia syndromes (smoking, alcohol consumption, hypertension, diabetes).
Phase 1

Population sampling

Screening for cognitive impairment

Instrumental-activities-of-daily-living scale

/

Information-Memory-Concentration Test

Mini-Mental State Examination d

Excluded

\

Search for risk factors

+

RI Potential cases

\ +

Phase 2

Confirmation of cognitive impairment Diagnosis of dementia I

History of present difficulty (CAMDEX) Potential

*

Medical history

Neuropsychological examination (CERAD) “

cases Physical examination

/

Hamilton Depression Scale

Mental

9

DSM–111R and [CD-IO criteria

I f

Excluded

retardation

Depression

+ +

Dementia Borderline

cases cases

Phase 3 +

Diagnosis of dementia subtypes

Laboratory tests

Neuroimaging

Post-mortem examination

NINCDS–ADRDA and ICD–10 criteria

Alzheimer’s Vascular Secondary Unclassified

disease dementia dementia dementia

1Representativesubsample of subjects

NOTE: CAMDEX is The Cambridge Examination for Mental Disorders of the Elderly. CERAD is the neuropsychological test of the assessment protocol used in the National Institute on Aging Multicenter

Consortium to Establish a Registry for Alzheimer’s Disease. DSM-111 is Diagnostic and Statistical Manual

of Mental Disorders Ill of the American Psychiatric Association. ICD-10 is Tenth Revision International

Classification of Diseases, adapted for use in the United States (Washington: National Center for Health

Statistics, 1989). NINCDS is National Institute of Neurological Disorders and Stroke, National Institutes of

Health. ADRDA is Alzheimer’s Disease and Related Disorders Association.

Figure 1. Multiphase procedure

45
Phases two and three–those who screen positive will undergo extensive clinical, neuropsychological, and laboratory workups (6,8) to confirm

the cognitive impairment and to reach the final

diagnosis of dementia syndrome and dementing

diseases. Dementia cases will be followed after 1

year to draw up the natural history of the disease. Depressed patients (9), borderline or doubtful cases, will be followed with a 6-month

reassessment until the diagnosis is confirmed.

The diagnosis of dementia and dementia

subtypes is primarily a clinical decision. In order

to reach a reliable consensus, a standardization

exercise is ongoing in the participating centers.

Records of 51 patients have been collected from

all 6 participating countries and from the coordinating center, University of Florence, Italy.

The patients have been consecutively admitted

to the neurological departments for cognitive

difficulties and have completed a diagnostic assessment. The final diagnosis was confirmed by

means of either a minimum 2-year followup or a

postmortem examination.

The records have been organized in a standard format and distributed to each of the

12 investigators involved in the research, together

with structured diagnostic forms, to be completed according to the diagnostic criteria used

in this study for dementia syndrome (DSM–111–R

(10) and ICD-10 (11)), depression (DSM-111-R),

and dementia subtypes (ICD–1O and DSM and

NINCDS-ADRDA(12)).

The investigators are now reassessing the

records. The level of agreement will be estimated on the following diagnoses:

No cognitive impairment, cognitive impairment without dementia, depression, other

psychiatric disorders, dementia syndrome,

probable or possible Alzheimer’s disease,

vascular dementia, Creutzfeld Jacob’s disease, and dementia in other diseases.

The agreement analysis is carried out by

means of the Kappa index (13). The consider46

ations of disagreement will lead to suggestions

for guide manuals and training sessions and to

possible reiterations of the standardization exercise until a suitable level of agreement is reached.

Preliminary results show that the agreement

goes from fair to good for Alzheimer’s disease,

vascular, and other dementia.

Project on osteoporosis

The osteoporosis project is a cross-national

study, with cross-sectional, case-control, and longitudinal components. It is designed to:

a.

b.

c.

in

ascertain the incidence of hip fracture in

participating countries,

identify risk factors for hip fracture and for

the decrease of bone mass in postmenopausal women, and

determine the age of peak bone mass and the

distribution of bone mass in different populations by race, age, and sex.

The cross-national exploration of differences

incidence of hip fracture and in risk and

protective factors will advance the development

of etiological hypotheses and identi~ specific

preventive and therapeutic interventions.

The principal research goals are the following:

. Validation of cross-national data on osteoporotic fractures

. Determination of age- and sex-specific prevalence ratios and incidence rates of osteoporotic fractures in each participating

country

. Cross-national assessment of risk factors for

bone loss and fractures

A cross-national analysis of hip fracture incidence rates may be useful in developing etiological hypotheses that can be tested by analytic

epidemiologic studies and clinical investigations

(14). The comparisons of incidence rates for hip

fractures in different countries show higher rates

for white than for black, Asian, and Hispanic

populations. The rates are higher for white fe-
Table 1. Age-adjusted incidence rates of hip

fractures per 100,000 population 50 years of age

and over, by sex

Five components are envisioned for this

project:

Age-adjusted Age-andrates sexGeographicarea and adjusted

years of survey Women Men rates

The cross-national annual incidence of fracture of the hip in the population 50 years of

age and over will be estimated from hospital

discharge data anaZysisand from other sources

of health information specific to each country

(for example, bonesetters in Africa).

A population survey will be undertaken to

validate the data available from these sources,

with the goal of providing comparable incidence rates from one country to another,

corrected for possible underreporting in some

countries.

A case-control study will be used to compare

cross-cultural risk factors for fracture of the

hip, such as family history (15,16), dietary

habits (17-26), physical activity (27–33), medication use (34,35), sensory impairments

(36,37), smoking habit (38-40), etc.

A study on peak bone mass, using Dual Photon X-ray (DPX), will assess the age of peak

bone mass in each country, the factors affecting the peak bone mass and the bone

mass distribution in each age group (after

the peak bone mass).

A longitudinal study is planned in two age

groups:

A group at the age of peak bone mass. The

bone mass loss will be measured at a

4-year followup in individuals chosen by a

probability sampling method, stratified by

gender.

A group of women in perimenopause and

Norway, 1983–84 . . . . . . . .

Sweden, 1972–81 .,, . . . .

New Zealand (white),

1973-76 . . . . . . . . . . . . . . .

United States (white),

1983-84,,,,.,.,..,.,,,

United States (Asian),

1983–84..., .,., . . . . . . .

United Kingdom,

1,293

622

551

291

968

477

620 151 414

559 207 402

338 104 235

1973-77 .:.,,,,....,,,,

United States (biackl,

, 275 96 196

1983-84,...:, . ...’.....

Finiand, 1968, ,,.., ,,...

United States (Hispanic),

1983–84., .,,,.....,,,.

New Zealand (Maori),

1973–76. ,,, . . . . . . . . . . .

Singapore, 1955–62 ,,...

Africa, Bantu, 1950-64,..

219

100

144

249

185

183

197 90 151

182

100

38

Source: Modified from: Maggi et al., Osteoporosis, International

1:232, 1991,

males than for white males, but for Asians, black

persons, and Maoris, the sex ratios are often

reversed (table 1).

Unfortunately, there are several shortcomings that may affect the comparison of existing

data, such as:

. Difference in definition of fracture

. Difference in case ascertainment

. Difference in selection of study population

● Difference in the period of ascertainment

. Difference in sample size

A cross-national study, using the same definitions, instruments, and sampling criteria may

help in overcoming most of these problems.

The research components for the WHO

project are:

. Descriptive

. Etiologic

. Quantitative

● Preventive interventions

early postmenopause (50–59 years of age).

Individuals identified during the population survey will be followed for 5 years in

order to study the association between the

occurrence of hip fracture and bone loss,

calcium intake, physical activity, and gender.

47
The results of these studies will constitute

the, background information for promoting preventive interventions.

Project on Determinants of Healthy

Aging

The Project on Determinants of Healthy Aging has reached the stage of finalizing the research proposal. It is envisioned as a crossnational longitudinal study, designed to identi~

factors affecting the full realization of physical,

mental, emotional, social, and economic wellbeing of individuals as they age. It is intended to

provide the basis to plan for interventions aimed

at promoting health and autonomy in aging

populations and maintaining the well-being and

productivity of older persons in all societies. It

should also facilitate the assessment of the impact of the aging of the populations on the social

and economic situation in developed and, particularly, developing countries (41-48).

Study design

Six countries, two developed and four developing, will be chosen by the steering committee

to participate in this longitudinal study. A cohort

of 3,000-4,000 subjects per country is likely to be

the maximum manageable size for a longitudinal

study of this nature.

Baseline data collection will include an interview on demographic, health, social, behavioral,

and economic factors; a functional assessment;

and laboratory tests.

Contact will be made with each study subject

on at least an annual basis to determine whether

functional status has changed, whether cognitive

function has been altered, whether any significant life events have occurred, and the extent of

supportive services used or needed. The mechanisms of maintaining contact should maximize

response rate and accuracy of responses. Because it maybe too costly conducting a followup

home interview, alternative methods may be

48

employed, where feasible (telephone interview

and mailed questionnaire). In the event that the

subject has died or been institutionalized, independent verifications will be required.

At the second and fourth years of followup, a

home interview will be conducted, similar to the

baseline interview. Performance-based measures

of function and venipuncture will also be repeated. The exact content and form of the

interview and examination may be modified,

based on previous results. All such changes will

be comparable across sites and subject to the

approval of the secretariat, steering committee,

coordinating center, and participating countries.

The baseline examination will include:

Performance-based measures of physical

function

Vision and hearing assessment

Pulmonary function

Grip strength

Anthropometry

Blood pressure measurement

Venipuncture

The development of the instruments will be

substantially aided by the efforts of the working

group of the International Research Network on

Healthy Life Expectancy who is charged with

development and validity testing in various cultural contexts of instruments to measure:

. Physical function

● Mental function

. Performance in activities of daily living

. Mobility and community contact

This working group met last in July 1991 to

explore appropriate measures for the instrument

(49). It is their plan to commence cross-national

validation studies in the centers selected by the

steering committee for participation in the WHO

Determinants of Healthy Aging Project.

Instruments will be selected and harmonized

into local cultural conditions and pretested in

the local populations.
References

1.

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Litvak J, Maggi S. Aging. Infectious Disease

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activities related to measuring health and health

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Arnaducci L, Baldereschi M, Amato MP, et al.

The World Health Organization cross-national

research program on age-associated dementias.

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Folstein MF, Folstein SE, McHugh PR. “Minimental state.” A practical method for grading

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Psychiatr Res 12:189-98.1968.

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Pfeffer RI, Kurosaki TT, Harrah CH, et al.

Measurement of functional activities in older

adults in the community. J, Gerontol 37:323–9.

1982,

Roth M, Tyme E, Mountjoy CQ, et al. CAMDEX. A standardized instrument for the diagnosis of mental disorder in the elderly with special

reference to the elderly detection of dementia.

Br J Psychiatry 149:698-709.1986.

Hamilton M. Development of a rating scale for

primary depression illness. Br J Clin Psychol

6:278-96, 1967.

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Adaptation of the International Classification of

Diseases, 10th Revision, draft March 1991.

McKhann G, Drachman D, Folstein M, et al,

Clinical diagnosis of Alzheimer Disease: report

of the NINCDS-ADRDA Work Group under

the auspices of the Department of Health and

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Maggi S, Kelsey L, Litvak J, Heyse S. Incidence

of hip fractures in the elderly: a cross-national

analysis. Osteoporosis International 1:232–41.

1991.

Evans RA, Marel GM, Lancaster EK, et al. Bone

mass is low in relatives of osteoporotic patients,

Ann Int Med 109:870.1988.

Seeman E, Hopper JL, Bach LA. Reduced bone

mass in daughters of women with osteoporosis.

New Engl J Med 320(9):554. 1989.

Matkovic V, Kostial K, Simonovic I, et al. Bone

status and fracture rates in two regions of Yugoslavia. Am J Clin Nutr 32:540.1979.

Holbrook TL, Barrett-Connor E, Wingard DL.

Dietary calcium and risk of hip fracture: 14-year

prospective population study. Lancet Nov. 5:1046.

1988.

Riggs BL, Wahner HW, Melton LJ, et al. Dietary calcium intake and rates of bone loss in

women. J Clin Invest 80:979.1987.

Ellis FL, Holesh S, Ellis JW. Incidence of osteoporosis in vegetarians and omnivores. Am J

Clin Nutr 25:555.1972.

Hegsted DM. Calcium and osteoporosis. J Nutr

116:2316.1986.

Haffner SM, Stern MP, Hazuda HP, et al. The

role of behavioral variables and fat patterning in

explaining ethnic differences in serum lipids and

lipoprotein. Am J Epidemiol 123:830.1986.

Hegsted DM, Linkswiler HM. Long-term effects

of level of protein intake on calcium metabolism

in young adult women. J Nutr 111:244. 1981.

Lutz J. Calcium balance and acid-base status of

women as affected by increased protein intake

and by sodium bicarbonate ingestion. Am J Clin

Nutr 39:281.1984.

Heaney RP, Reeker RR. Effects of nitrogen,

phosphorus, and caffeine on calcium balance in

women. J Lab Clin Med 99:46. 1982.

Spencer H, Rubio N, Rubio E, et al. Chronic

alcoholism. Am J Med 80:393.1986.

Dalsky GP, Stocke KS, Ehsani AA, et al. Weightbearing exercise training and lumbar bone mineral content in post-menopausal women. Ann Int

Med 108:824.1988.

Smith EL, Reddan W, Smith PE. Physical activity and calcium metabolism for bone mineral

increase in aged women. Med Sci Sports Exert

13:60.1981.

Bortz WM. Effect of exercise on aging-effect of

aging on exercise. J Am Ger Soc 28(2):49. 1980.

Mazess RB, Whedon GD. Immobilization and

bone. Calcif Tissue Int 35:265.1983.

49
31.Donaldson CL, Hulley SB, Vogel JM, et al,

Effect of prolonged bed rest on bone mineral.

Metabolism 19:1071.1970.

32. Schapira D. Physical exercise in the prevention

and treatment of osteoporosis: a review. J R Soc

Med 81:461.1988.

33. Aloia JF. Exercise and skeletal health. J Am Ger

SOC 29(3):104. 1981.

34. Hahn TJ. Corticosteroid-induced osteopenia. Arch

Intern Med 138:882.1978.

35. Wasnich RD, Benfante RJ, Yano K, et al. Thiazide effect on the mineral content of bone. New

Engl J Med 309:344.1983.

36. Blake AJ, Morgan K, Bendall MJ, Falls by elderly people at home: prevalence and associated

factors. Age Ageing 17:365.1988.

37. Felson DT, Anderson J, Hannan MT, et al.

Impaired vision and hip fracture: The Framingham Study. J Am Geriatr Soc 37:495.1989.

38. Daniell HW. Osteoporosis of the slender smoker.

Arch Intern Med 136:298.1976.

39. MacMahon B, Trichopoulos D, Cole P, et al.

Cigarette smoking and urinary estrogen. New

Engl J Med 307(17):1062. 1982.

40. Daniell HW. Smoking, obesity, and the menopause. Lancet 2:373.1978.

41. Fozard JL, Metter EJ, Brant LJ. Next steps in

describing aging and disease in longitudinal

studies. J Gerontol: Psychological Sciences SPe- .

cial 45(4):116-27. 19901 -

42. Rowe JW, Kahn RL. Human aging: usual and

successful. Science 23:143-49.1985.

43. Pinsky JL, Leaverton PE, Stokes J. Predictors of

good function: The Framingham Study. J Chron

Dis 40 Suppl(l):1595-675. 1987.

44. Guralnik JM, Kaplan GA. Predictors of healthy

aging: prospective evidence from the Alameda

County Study, Am J Public Health 79(6):703-8.

1989.

45. Editorial. The sunny side of aging. JAMA,

263(17):2354-5, 1990.

46. Harris T, Kovar MG, Suzman R, Kleinman JC.

Longitudinal study of physical ability in the oldestold. Am J Public Health 79(6):698-702, 1989.

47. Editorial. Isolated systolic hypertension in the

elderly. JAMA 265(24):3301-2. 1991.

48. SHEP Cooperative Research Group. Prevention

of stroke by antihypertensive drug treatment in

older persons with isolated systolic hypertension.

Final results of the systolic hypertension in the

elderly program (SHEP). JAMA 265(24):3255-64.

1991.

49, REVES, International research network for interpretation of observed values of healthy life

expectancy. Noordwijkerhout. June 1991.

50
Chapter 11

Health promotion and

disease prevention

workshop

by Gerry E. Hendershot, Ph. D., Division of

Health Interview Statistics, National Center for

Health Statistics

Our interest in doing comparative international studies of health promotion and disease

prevention among the elderly arose from the

need, using the U.S. National Health Interview

Survey, to track progress toward, first, the 1990

Health Objectives for the Nation and, now, the

Year 2000 Health Objectives for the Nation. As

part of that tracking effort, the Division of Health

Interview Statistics, by means of the Health

Interview Survey, did surveys of health promotion and disease prevention in 1985 and 1990

and is presently conducting a similar survey for

1991. We expect to do future surveys in 1995 and

the year 2000 and possibly beyond if there is

another set of objectives.

Thus, we have a major commitment to measuring health promotion and disease prevention

in the U.S. population. It has been noted by

authoritative bodies looking at measurements of

health promotion in the United States that they

were not designed especially well for measuring

health promotion and disease prevention among

the elderly. It was our hope in participating in

this international collaborative effort that we

could improve measures of health promotion

and disease prevention among the elderly in the

United States. As part of that effort, we have

been collaborating with the Netherlands Health

Interview Survey staff. The Netherlands Health

Interview Survey is similar in many respects to

the U.S. National Health Interview Survey, which

makes the possibility of comparison between the

two realistic. We have a good working relationship now with the staff, Yaap Van Den Berg,

Henk Swinkels, and their colleagues in the

Netherlands.

Our general approach in that collaboration is

to, first, estimate the prevalence of healthrelated behaviors in the elderly population in

the two countries, using the respective health

interview surveys, Then, once those prevalence

estimates have been made and compared, we

would investigate the possible methodological

causes for the differences we find in the prevalence estimates, Then, when we have resolved

some of those methodological differences, we

would move on to consider some of the societal

and cultural differences between the two countries that could explain differences in the prevalence estimates.

During this conference, we have further specified the list of topics on which we want to focus

in this international comparison. In addition to

mental health, smoking, and alcohol, about which

some results were presented earlier in the meeting, we are adding overweight, blood pressure,

and preventive services, specifically Pap tests

and mammograms for elderly women. We decided at yesterday’s workshop that we would

approach those serially rather than all at once,

beginning with smoking and alcohol, and then

move on to mental health as the data from the

U.S. Survey become available.

Other ideas that came out of yesterday’s

meeting were that we should focus more in a

substantive way on the purposes of the international comparison, which will make a difference

in how we approach the analysis of the data.

51
What was meant here I think is that we should

have some hypotheses in mind when comparing

estimates of prevalence of health-related behaviors in the elderly in the Netherlands and the

United States. For instance, are we interested in

differences in the health care financing and

health care delivery systems in the two countries

that might affect health promotion and disease

prevention behaviors in the elderly? It was

pointed out, for instance, that in the Netherlands

there is virtual universal health care coverage,

whereas in the United States, as you know, 13 or

14 percent of the population is reported not to

have any health care coverage. Does that difference in health care coverage affect access to

preventive services among the elderly in the two

countries, which could then affect the prevalence of health-related behaviors? If that were

the focus of our comparing estimates from the

two countries, our approach to the analysis of

the data might be different than it would be, say,

if we were looking at the epidemiology of health

conditions in the two countries. I do not know

what our substantive focus will be, but we were

grateful for the suggestion that we focus more in

forming hypotheses for the comparison of the

data from the two countries.

It was also suggested that, instead of taking

an ad hoc approach to the investigation of methodological differences between the two surveys,

which might affect our measures, we should be

more focused in that regard as well. That is, we

should identify potential methodological differences and problems and focus some of the

research specifically on those problems. For example, one difference between the two surveys

that I think wc should investigate is the much

higher nonresponse rate in the Dutch National

Health Interview Survey– I’m not sure, but I

think that rate is about 40 percent.

Forty percent is much higher than the U.S.

National Health Interview Survey nonresponse

rate, which, depending on what survey we are

52

talking about, is anywhere from 5 to 15 percent.

That is an important difference between the two

surveys, one that we should keep in mind when

comparing the results of the two countries,

We have only two countries, the United

States and the Netherlands, currently involved

in this study of health promotion and disease

prevention among the elderly. And it was suggested again yesterday that we should include, if

we can find them, other countries. Specifically,

the United Kingdom was suggested. The United

Kingdom does a general household survey that

includes some health questions, such as smoking

on a regular basis, and has recently begun a

national health survey that is similar in some

respects to our National Health Interview Survey. So there is the possibility that we can get the

United Kingdom involved in this study. Also,

David Williams made a presentation here based

on a survey of health-related behaviors of Moscow residents that was not focused specifically

on the elderly but did include them, and I am

hopeful that we can make some comparisons

with that data set, perhaps focusing on some

comparable large city in the United States for

which we can make estimates from the National

Health Interview Survey.

A related activity in which our Dutch colleagues have been involved is the World Health

Organization’s consultations on health interview

surveys in European countries related to the

Health for All Objectives, an attempt to standardize some of the measures that are tracking

progress toward those objectives using health

interview surveys. The U.S. Health Interview

Survey staff has participated in one of those

consultations and plans to continue to participate in future consultations as part of that effort.

Finally, it was not discussed at the workshop

yesterday, but I would like to say again that our

staff in the Division of Health Interview Statistics has a developing interest in the role of the

family in various issues of health status and use
of medical care services, including the elderly I want to thank those who participated in the

population as it is affected by family conditions. workshop yesterday. It was very helpful, and it

That is an area I hope we will be able to include has been a good meeting for us. I think we are

in our collaboration with our Dutch and (poten- moving ahead and will expect to see some hard

tially) English and Soviet collaborators. results in a year or two.

53
Chapter 12

Vitality workshop

by Richard Havlik, M.D., M.P.H. National

Institute on Aging, National Institutes of Health

The goal of this cross-national research project

is to understand the meaning of any similarities

or differences in measures of physical, social,

and mental vitality among populations in the

United States, Italy, and Israel. Before interpreting preliminary findings, such as the similarity in

frequency of those able to do heavy housework

in the three countries, issues of methods, definitions, and other related factors must be addressed. These issues were the focus of the

workshop deliberations.

Under “Methods,” the following topics were

discussed by team members and other participants:

. Details of comparisons: Questions and

statistics

. Validity of exercise questions – MONICA

(Monitoring Cardiovascular Disease Project)

. Variability

. Longitudinal studies

. Replicates: Cohort effects

. Calibrate questions on younger group (50

years versus 65–74 years)

. Use continuous measures with standard

deviations

The team members were properly cautioned

about the need to make sure that any comparisons are valid, and that includes both the questions themselves and the statistics used, for

example, age adjustment. Actually, to carefully

dissect any results, we know that this has to be

done, The validity of the exercise questions

came up in discussion. Originally, it was hoped

that the validity of some of the exercise questions could be addressed by the health promotion group as part of the activities of the

questionnaire design lab at the National Center

for Health Statistics (NCHS). Because this was

not possible, we still lack some very basic validity

measures of the questions. For example, the

results for walking a half a mile were comparable to analyses using walking a quarter of a mile.

So, clearly, there will have to be some comparisons to other studies, such as the World Health

Organization project called MONICA (Monitoring Cardiovascular Disease Project), even though

the age range is predominantly 65 years and

under and the study has a small older subgroup.

In some of the countries, they are doing detailed

exercise validations, and we might be able to use

them to understand the validity of some of the

exercise questions.

Variability in measures can be both short

term and long term. This is an ongoing problem

for any questionnaire-driven analysis. And, of

course, we do not know what the short-term

variability is of these various states or traits, but,

hopefully, we will try to get some information.

Whether it can be done in the context of the

existing studies or would require separate studies is to be determined.

In addition to the issue of variability is the

plea that Dr. George Myers and others have

made for longitudinal studies. Such studies allow

for better predictions of outcomes. In these

areas, there are

the Established

plans for followup, certainly in

Populations for Epidemiologic

55
Studies of the Elderly (EPESE) and the Longitudinal Study of Aging. This also then will give

us some idea of whether the vitality measures

that we have been using are stable or how they

do change. Also, it is important to replicate

results both within the country and among other

countries. The issue of quality of life of the

elderly in the Veneto (Italy) study, as Dr. Mara

Pavan said during the plenary session, is that,

although she is confident that the questions

asked and responses given in the Veneto study

are representative of at least Northern Italy, this

is probably not the case for Southern Italy. So, a

replicate that not only duplicates those questions asked in Northern Italy but also does them

elsewhere is necessary. In fact, there are plans to

use many of these same questions in longitudinal

studies at 6 or 10 different sites in Italy. Israel is

also doing a replicate and a longitudinal study.

A possible cohort effect must be considered.

This issue came up during the discussion as the

question: Are we becoming more vital and aging

better? In the model of Dr. Alvar Svanborg in

Sweden, where he had replicates of similar groups

70–79 years of age that were asked the same set

of questions, in fact the investigator appeared to

be seeing better cognitive function over time.

Such findings suggest that the earlier and later

cohorts might differ in certain fundamental ways.

We addressed the issue of whether these

vitality questions are “culturally bound” or being

interpreted differently by subgroups because of

variable life experiences. One of the strategies

for addressing this would be to determine how

the questions perform in a slightly younger group.

Now, interestingly, some people felt the most

vital age was about 50 years of age, the “great

halfway point.” This age would be used as the

standard of comparison. Another possibility is to

try to dichotomize the analysis so that we basically look at the age group 65–74 years, which is

really quite “young/old” and might be an indicator of a goal for the older age groups. Of course,

at NCHS and in other work, we have used, for

example, the age group 20–29 years for ideal

weight; and there is certainly some argument as

to whether one should go to a very young age to

set standards for an older age group.

Avery good point was made about heterogeneity in older persons. Dr. T. Franklin Williams,

the former director of the National Institute on

Aging, has talked on other occasions about the

inappropriateness of only presenting means with- ~

out the distribution. Also, the idea was emphasized that we should show in our analyses at

least three or four subdivisions, such as “much,”

“some,” “many.” This need developed in our

discussion of the mental vitality measures of

enjoying life or being happy during the past

week. When we looked at the distribution, it

appeared that the difference between Italy and

the United States was really in the “very much”

catego~ of five to seven times per week, whereas

the rest of the distribution was very similar.

These cormnents summarize necessary improvements in methods, and the team members

thought that we got some good suggestions. It is

a challenge and, in fact, we are going to move

ahead with these ideas, at least where we can,

and initiate these analyses.

Perhaps the most interesting part of the

discussion involved definitions of vitality. Topics

included:

Mental vitality– Cognitive and emotional

components

Read newspapers – Social and mental vitality

Physical aspect of occupation

Quality of life, for example, no loneliness, no

tiredness

General vitality measure (World Health

Organization)

56
● Crosscutting measures, for example, voting,

driving, peak expiatory flow rate, and sexuality (frequency versus satisfaction)

Fortunately, nobody said that our paradigm

was completely inoperative or inappropriate, but

there were some subtle suggestions that maybe

there could be improvements. For example, in

studies in the Netherlands, there is a tendency

not to use the term “mental vitality” but to get

at the issue of cognition versus the emotional

side. It may be that we can keep mental vitality

but begin dividing up, or getting at, subdomains

that are more specific.

There was a question about reading newspapers. Is this an indication of mental vitality, or is

it really quite social? Certainly these questions

can be moved around to other categories. The

same issue appears with occupation. Is occupation really an indicator of social productivity or,

even better, does it have exercise components?

Certainly in the Iowa subgroup of EPESE it

does, and what it suggests is that there is probably no simple classification. In fact, in thinking

about it now, maybe it will be most important to

identify a number of these crosscutting issues

that address more than one domain. Maybe, we

do need to have some categories that are more

general, that address all three: the physical,

social, and mental.

The quality-of-life issue was raised again,

and I think it comes up periodically. Are we

maybe setting our sights too high and trying to

be too objective where, in fact, the issue is the

subjective quality of life; that is, no loneliness,

no tiredness, no depression? We should really

make sure that this aspect is covered. One of the

workshop participants, just from personal experiences, felt that this was really the area of most

importance. In support of this view, in an issue

oil Controlled Clinical Tn”als,there was a discussion of the use of quality of life as an outcome

measure in clinical trials. It is a nice summary of

all the problems in trying to use this kind of an

indicator.

We were also told that, like most things,

there is nothing new under the sun and that the

World Health Organization had tried to develop

general vitality measures many years ago and

had identified some relevant questions. It was

suggested that we go back to the literature and

do a little more homework in trying to find those

definitions of general vitality.

Crosscutting measures have been alluded to,

but there are things that really are summary

measures. For example, peak expiatory flow

rate or vital capacity maybe a better indicator of

what we have been discussing than some of the

subjective measures.

Certainly, driving a car has a physical component, a social component (where you want to go,

why you have to go), and a mental component,

as well. Voting is another

able to develop a whole

whether we have enough

sites is not known.

Finally, on a popular

one, and we may be

other list. However,

data in the existing

topic, the group got

into a lively discussion about male–female differences in sexual activity. The issue of whether the

question should be frequency or satisfaction was

raised, and it seemed to have a gender effect

that was different. This topic merits further

consideration.

There are some miscellaneous issues that

were discussed. The topics were as follows:

. Heterogeneity: Male–female differences

. Volunteerism as substitute for family in

United States

. Comorbidity

● Use of psychotropic drugs

the

With special emphasis, the group again identified male–female differences in measures of

vitality as important.

mentioned during Dr.

Such comparisons were

Myers’ presentation, that

57
is, to look at differences for men and women in

various indicators of vitality among countries.

Obviously, vitality measures are the complement

to or the opposite side of disability, and there

may be some gender comparisons that would be

worthwhile.

We talked about why volunteerism might be

more common in the United States than in other

countries, It was pointed out, incidently, that

actually the Supplement on Aging Survey does

have a question on volunteerism. So, we will be

able to compare what was obtained in the study

“Americans’ Changing Lives” with the 1984 Supplement on Aging. One of the ideas that was

presented was that somehow volunteerism is a

substitute for the general United States’ lack of

an extended family. One is helping other people

and, presumably, then getting some reward. This

is a cultural difference that we have in the

United States, where nuclear families are more

common.

There is the major issue of covariables and

how they can affect our vitality measure. Various

categories of diseases will have different effects.

Also, psychotropic drugs can affect vitality assessment, not in the positive sense of being tranquilized and happy but in the negative sense of

perhaps discouraging vitality by the overuse of

medications.

Also, because someone is identifying somebody at a specific point in time, a disease,

medication, cold, fall, family problem, loss of a

loved one, or any of these kinds of things can

occur simultaneously and will obviously affect

any measurements.

Replicates were mentioned earlier. We keep

open the possibility of incorporating data from

other sources, for example, from Asia. There are

some population-based studies in Japan and in

Taiwan that have used exactly the same questions as Americans’ Changing Lives. I am aware

that the Hong Kong group has some similar

questions, so we might be able to expand this

into another area.

The workshop was a very good one, and the

team members appreciate everyone’s input.

58
Chapter 13

Functional disability

workshop

by Mary Grace Kovar, Dr.P.H., Office of Vital

and Health Statistics Systems, National

Center for Health Statistics

Given our work group, I do not think they

will have questions, they will probably have corrections, All of the members of the work group

contributed to the discussions, and what I have

to say owes much to their generous willingness

to contribute their intellectual and data resources. Although I am presenting the results,

we are all authors. Those were the opening

sentences of my report on Functional Disability

Workshop at the first ICE on Aging. They were

true then and they are true now. I want to add

that we were extraordinarily fortunate to have

the people who attended and participated in the

workshop yesterday. Their intellectual input was

really impressive.

We had two additional advantages. The group

certainly had more experience with international

collaboration that included data on disability.

You heard a bit the other day about the two

projects that are underway, so I do not need to

elaborate on that. The group also had the advantage of including people involved in the work of

the World Health Organization, Dr. Van Den

Berg from the Netherlands and George Myers

whom you heard this morning.

We also had two members with responsibility

for major projects on disability in the United

States: Dr. Winn, who is Deputy Director of the

Division of Health Interview Statistics, told us of

the plans for a Disability Supplement to the

National Health Interview Survey in 1993-94,

and Dr, Seltser, who is Chair of a Public Health

Service Task Force on the Medical Criteria for

Disability, told us of the plans for that task

force.

I wanted to tell you who was in the workshop

because that combination of people has a great

deal of knowledge about what is going on in the

international field and has responsibility for major

happenings in the United States. Their knowledge certainly informed and enriched our discussion. It also influenced the summary and the

recommendations that I will be telling you about

and definitely influenced them for the better. I

hope that the recommendations are the consensus of the group. The editorial comments obviously are my own.

There was general agreement that the two

collaborative efforts that are already underway

should be completed and published within the

year so that everyone can have access to the

data. That should be taken as a given. The

people who are responsible are in this room; we

have to get it done. There needs to be more

emphasis on involving more people in

collaborative analysis. We must build on what

we have. That conforms to a basic tenant of

ICE on Aging: Use the data we have. And

without any direction from anybody, it was reiterated yesterday. We need more comparable

analyses.

One suggestion was that we need to write a

paper on what is available, invite others to

respond, and then perhaps be able to create an

inventory of disability data for international comparisons. No one really took responsibility for

59
writing that paper, but I think it is something

that we need to get going.

The issue of collecting comparable data on

the prevalence of disability has to be a top

priority. Such data are needed for many purposes —ranging from the estimates of intrinsic variability in populations to estimates of how well

we are doing with our different health care

systems. In the near future at least, coordination

is probably best accomplished through working

with the international organization, using questions that they are recommending, and also

having input into the kinds of questions they are

recommending. In every country, the people

who have the responsibility for collecting the

basic data on disability should work with such

organizations as the World Health Organization,

the Organization for Economic Cooperation and

Development, and the International Network on

Health Expectancy and the Disability Process

network. My editorial comment on that is that

we probably need to take care that the international meetings are attended both by university

representatives – the people who are doing the

thinking about some of the policy issues – and by

the people who are responsible for collecting the

basic information so that we can better coordinate what actually gets done.

If we are ever to measure the prevalence of

functional disability, we must include cognitive

functioning. We must also learn more about the

interaction between physical functioning, which

is now measured by activities of daily living

(ADL’s), for example, and cognitive functioning.

I do not want to belabor this point, but it is

obvious to everyone who has ever worked with

ADL’s, and even more so for the instrumental

activities of daily living, that, although they are

often viewed as measures of physical functioning, they incorporate measures of cognitive functioning, which are seldom measured directly.

When we are collecting the outcome data,

the physical disability data, we must also be

certain that we collect the information on the

correlates, We need the measures of socioeconomic status, we need the measures of differences of the population, we need the measures

of the conditions that probably lead to disability,

we need to make a separation between illnesses

and injuries, and we need the measures of the

things that help alleviate disability, such as community services, family support, and assistive

devices.

A relatively minor point is that quite probably one way of dealing with the differences in

socioeconomic status in the different countries is

to switch to the use of quintiles so that we have

comparable proportions of the population,

Returning to major points, information about

the people in institutions is critical if we are

going to understand what is happening with

disability of older people. The three surveys that

were used for the data that we presented the

other day all rely on data on communitydwelling noninstitutionalized populations. We

do not really know very much about the differences between the people who were in institutions and the ones who were not, the proportion

of people in institutions, or even what it means

to be institutionalized in different countries. We

do not know whether our definitions are even

comparable, partially because we are under different health care systems. The Canadian data

that Dr. Forbes presented provided a tantalizing

glimpse of what we could learn if the total

population of older people, regardless of where

they reside, were included in surveys. If we

cannot include them, and there are sometimes

reasons why we cannot, we should at least learn

where they are, how many of them there are,

and what institutionalization means in the different countries. If we cannot include the total

aging population, let us at least know more

about whom we are excluding.

There was, as usual, discussion of the International Classification of Disability and Handi60
caps (ICDH) and whether

There was, also as usual,

we should be using it.

a lack of consensus.

However, the ICDH is being revised, and the

United States should be involved in that revision. We should be involved, just as we are with

the International Classification of Diseases (ICD).

There was a very strong recommendation for our

involvement.

In addition to the international comparisons

of cross-sectional data, we need evidence about

the processes from longitudinal data. As we all

know, longitudinal data might lead to different

conclusions about the correlates and consequences than cross-national comparisons

from cross-sectional data. Finally, we need to

work for comparability within as well as among

countries,

I think there was a strong sense from the

group that this is a very, very high-priority area.

The population of the world is aging; if we do

not learn how to prevent or postpone functional

disability, we are going to have major problems.

We are going to have problems with the burden

on resources. I’m not just talking about the

public resources, it’s the burden on people who

either are suffering themselves or whose families

have to provide their care. If we are going to

reach the goal of successful aging and high

vitality that Dr. Havlik talked about, this is one

of the things we must do to get there. We have

to learn and do something, because people who

are disabled are not going to be vital, active

people.

We need to learn more because, as I said,

the population of the world is aging, and there is

going to be a major burden on the health care

systems of the world. George Myers talked about

the status of people at age 65 and said that

women in particular all over the world are not as

healthy as they should be, We need to learn

more about the variability among the countries

and the variability among people so that both

men and women that age will be healthier in the

future.

61
Chapter 14

Outcomes of nursing home

care workshop

by Joan F. Van Nostrand, M.P,A., Office of

Vital and Health Statistics Systems, National

Center for Health Statistics

Introduction

The plenary sessions of this International

Symposium have highlighted several issues about

long-term care (LTC) in general and nursing

home care in particular. Dr. Cohen, in his Introduction to the Symposium, said that a major

focus of research on aging was eventually to

eliminate the need for LTC. Dr. Hennessy, in his

presentation about the LTC project of the Organization for Economic Cooperation and Development (OECD), spoke about different systems

of providing LTC in OECD countries and about

common problems: how to fund the increasing

demand for LTC and how to keep the elderly

out of nursing homes through the use of home

health and community-based LTC. These issues

are germane to the efforts of the ICE AGE

research team analyzing outcomes of nursing

home care and surfaced at yesterday’s workshop.

At the workshop, the research team concentrated discussion on several analytic topics:

Implications of preliminary data comparisons

Quality of nursing home care and quality of

life

Comparisons of outcomes between nursing

homes and home health care

Patient careers and transitions

Measures of dementia

Although other topics were raised, the team

focused the discussion on these issues. Each

member of the team was the discussion leader

for a particular topic. This report on the workshop will summarize the issues, insights, and

conclusions of the discussion.

Implications of preliminary data

comparisons

Wim van den Heuvel from the Netherlands

led this discussion. It was based on issues raised

after examining some preliminary data from Australia, the Netherlands, and the United States.

Data were only for comparable classes of nursing homes. These classes were selected based on

considerable deliberation by the research team

after the first International Symposium in 1988.

They were: nursing homes in Australia, somatic

and psycho-geriatric nursing homes in the Netherlands, and nursing homes certified for Medicare and Medicaid in the United States,

The purpose of the preliminary data comparisons was to identify methodological issues and

to select a subset of outcomes to analyze. One

methodological issue was whether the nursing

home populations are similar across countries.

The existence of similar populations is a validity

check on the classes of nursing homes chosen for

comparison among the countries. Preliminary

comparisons showed the existence of similar

populations between Australia and the Netherlands. The percent of nursing home residents

needing help with specific activities of daily

living showed only a 1-4 percent difference between these countries, Comparison was made

among Australia, the Netherlands, and the United

States in the percent of discharges who had long

stays (that is, 1 year or more). The percents were

similar when live discharges were compared and

also when dead discharges were compared. However, there were major differences in the percent

63
of those staying less than a year;

discharges in the Netherlands

the rate for live

was higher by

22 percent. A possible reason maybe the heavy

emphasis on rehabilitation in the nursing homes

in the Netherlands. This issue is one for further

methodological examination.

The primary diagnosis of dementia, made at

admission and also at discharge, raised some

critical methodological issues. In both the United

States and the Netherlands, there was a decrease between the percent of dementia cases at

admission and at discharge. This was the case

whether the person was discharged alive or dead.

Workshop participants discussed several methodological issues, including what would be reported as the primary diagnosis at discharge for

residents with both dementia and serious physical problems. The main conclusion of this discussion was to disaggregate the data, that is, conduct

a separate analysis for those with dementia versus those without. The rationale behind this

conclusion was that the diagnosis of dementia

has certain implications for outcome measures.

For example, persons with dementia tend to

have longer lengths of stay because discharge to

the community may not be feasible. Because of

the longer lengths of stay, persons with dementia

are more likely to be discharged dead. Further

analysis of outcomes for residents with dementia

should examine the role of the mental hospital

and the acute care hospital vis-lt-vis the role of

the nursing home in providing care.

Quality of nursing home care and

quality of life

Anna Howe from Australia led this discussion. The discussion began with the issue of how

to conceptualize quality of care and quality of

life and how to establish expected outcomes.

One issue that generated much discussion was

situations when death was a positive outcome.

Another issue was the conceptualization of quality in relation to the level of analysis. Should

64

quality be conceptualized and analyzed on the

basis of individual assessments of residents or of

aggregated assessments of groups of residents,

such as the percent who were discharged to an

acute care hospital? How would the concept of

quality based on the characteristics and policies

of the nursing home (for example, visiting hours,

meal selection) mesh with a concept based on

the patient?

One conclusion of the discussion was that a

fruitful approach to examining the quality of

outcomes was to disaggregate the residents by

the goal of care: rehabilitation, management of

specific chronic disease, management of cancer,

management of dementia.

Some existing frameworks for conceptualizing quality were identified as potentially useful

to future analysis. They included:

●

●

●

The standards for nursing home care of the

U.S. Department of Veterans Aflairs

The questions on opportunities for social

contacts in a study of board and care homes

planned by the U.S. Department of Health

and Human Services

The concept of excess disability, Given a

resident’s chronic health problems, are there

other problems that are treatable but cause

unnecessary (that is, excess) disability because they are untreated? One example of

excess disability is the resident with Alzheimer’s disease who has treatable depression that is untreated. Treatment of the depression can improve the resident’s quality of

life. Another example is the bedfast resident

who has excess disability caused by decubitus

ulcers.

Workshop participants recommended a “pragmatic” approach for analyzing quality: analyze

only one or two items about quality of care

commonly available in all the countries. Examples of possible items were decubitus ulcer and

measures of social contacts.
Comparisons of outcomes between

nursing homes and home health care

Leaders for this discussion were Betty Havens of Canada and Robert Clark of the United

States, The discussion focused on what measures

of outcome could be used to compare nursing

home care with home health care. One measure

proposed was death, but the issue was raised as

to whether it could be judged as a positive

outcome. Another measure proposed was the

satisfaction of the patient. It was noted, however, that patients generally exhibit a positive

bias toward home health care because, in comparison to nursing home care, home health care

fosters patient autonomy and independence.

Betty Havens described an approach for comparing outcomes in the two settings according to

the structure of the LTC system. In Manitoba,

Canada, nursing homes and home health care

have the same types of clients. For this reason,

the rate of persons discharged dead should be

similar for the two care settings. Hence, examination of rates would provide a comparison of

outcomes for these two care settings. Workshop

participants felt that this structure did not exist

in the LTC system in the United States. Client

characteristics in the two care settings were not

the same, and, therefore, rates for dead discharges would not be similar. Hence, the structure of the LTC system was not judged as a

useful approach for comparing outcomes among

countries.

Workshop participants concluded that the

satisfaction of the family, rather than of the

patient, with the quality of care might provide a

strong basis for comparing outcomes between

settings. Another conclusion was that outcomes

could be compared at a systemwide level. In

such a comparison, the outcome of a discharge

from home health care could be measured as an

admission to a nursing home, Analysis of outcomes would then concentrate on admission

rates to nursing homes and on transitions back

and forth between the community, where home

health care is received, and the nursing home.

Patient careers and transitions

Tor Romoren from Norway led this discussion. He described his LTC data set for a local

area in Norway. He had recorded the experience

of all elderly in the area over a long period of

time, describing their careers of service use and

their careers of family assistance. He identified a

group of about 20 percent of his cases who died

after the age of 80. He examined their careers of

service use beginning 5 years before death. He

found that, of those who used nursing home

care, the stay was short (generally less than 30

days). In some cases, there was no nursing home

use at all.

This group is in contrast with another group

that had several hospital stays and one to two

nursing home stays before death.

One conclusion drawn from these examples

was that patient careers of prior service use are

important to an analysis of nursing home outcomes. Another conclusion was that outcomes

should be examined separately:

a. for heavy versus light service users,

b. for those with and without hospital stays, and

c. for those with and without previous nursing

home stays. Such comparisons might also

provide information about the quality of care

in these different settings.

Measures of dementia

I led the discussion on this topic. Dr.

Gurland’s presentation on cognitive function and

the elderly provided a focus for the discussion.

Of particular interest to the discussion were his

comments about various approaches to measuring dementia: how different approaches provided different types of information and how

important it is to examine these multiple dimensions rather than to select one approach as the

“best” way to measure dementia. The members

65
of the research team identified several measures

of dementia in their data sets:

● Orientation to time and place

● Actual assessments like the mental-status

questionnaire

. Diagnoses that were recorded in each country according to the International Classification of Diseases (ICD)

. Behavior problems and whether or not these

behavior problems required extra care

One conclusion of the research team was to

use the term “impaired mental functioning” instead of “dementia.” This recommendation was

made by workshop participants from the U.S.

National Institute of Mental Health because this

label was more apt for the elderly than was the

term “dementia.” Another conclusion was to

follow Dr. Gurland’s recommendation of using

multiple dimensions to measure impaired mental functioning. Several dimensions for comparison were proposed:

● Length of stay

. Proportion discharged dead

. Different ICD diagnoses of impaired mental

functioning

● Orientation

. Patient assessment of mental status (considering the impact of medication)

These comparisons should help the research

team identify the most appropriate measures of

outcomes for discharges with impaired mental

functioning.

A third conclusion was on the approach for

comparing outcomes for discharges with behavior problems. This discharge group should be

disaggregated into those with and without transitions to other nursing homes and mental hospitals. This should be done because those with

transitions were a special group. They are people with such severe behavior problems that they

are discharged elsewhere because the staff has

great difficulty in dealing with them when providing care.

This discussion ended with a prediction about

the type of patients who would be receiving

nursing home care in the future. Central to the

discussion were the comments of Dr. Hennessy

about the shift in LTC policy of many OECD

countries. The shift is toward the use of home

health care over nursing home care because

costs are assumed to be less and because the

elderly prefer the independence that home care

offers. If that policy shift occurs, nursing homes

would have fewer patients with physical problems because they would be treated in the community. Instead, it is predicted that nursing

homes would have more patients with impaired

mental functioning. Chief among these would be

patients with such severe mental and behavioral

problems that they could not be maintained in

the community even with the assistance of home

health care. Thus, the future for nursing homes

may be one in which most of the patients have

severely impaired mental functioning, If these

are the nursing home patients of the future, it is

important for the research team to focus on

measuring the outcomes of this particular group.

66
Chapter 15

Chronic disease

common in the elderly

workshop

by Tamara Harris, M.D., Office of Analysis and

Epidemiology, National Center for Health

Statistics

I would like to thank my collaborators,

particularly Suzanne Ho from Hong Kong and

Ed Bacon, who have been very giving of their

time and their energy in allowing us to actually

come to this meeting with a product. I would

also like to thank Anne Looker and Jennifer

Kelsey who have contributed in a major way to

this project.

In our session, we reviewed the progress of

this project thus far with regard to our original

and our revised goals. We decided on a product

for the project, which is a manuscript that will

compare data on hip fracture incidence between

the United States and Hong Kong for submission to an appropriate journal. This manuscript

is now in final stages of preparation, and our

discussion at the workshop will help us to complete it.

We said that we would continue to work on a

small series of analytic projects related to hip

fracture but not to expand the focus of this

group beyond this particular outcome. For instance, Dr. Baruch Modan, who has been spending time at the National Center for Health

Statistics, has been obtaining data on hip fracture incidence from Israel; and we will use that

data to explore the importance of transfer rates

on overall rates that might be obtained from

more general sources of information from country to country. In addition, we will recontact our

original respondents regarding hip fracture rates

to expand the countries for comparison.

67
Chapter 16

Closing comments: Next

steps for the ICE on Aging

by Manning Feinleib, M.D., Dr.P.H., National

Center for Health Statistics

I would like to thank everyone who participated in this symposium, especially Joan Van

Nostrand and Jacqueline Davis for producing

such a wonderful program,

In the introductory session, Dr. Cohen used

the image of the classical myth of Tithonus to

highlight some of the points about growing old

without being able to maintain vigor and youthfulness. I would like to continue with that aphorism. There are two versions of the final fate of

Tithonus. One claims he spent eternity with only

the ability to chatter away endlessly. The other

version states that he aged into a cicada, a

cricket also chattering away forever. I do not

want this to be the fate of this symposium —eternal chattering without meaning or utility. I hope

the products of our deliberations do not result in

endless, uninformed discussions, I want to see

meaningful outcomes that will guide public policy and be useful to all people interested in the

aging phenomenon, Toward that end, we hope

to produce a proceedings of this symposium

within a year that will guide us in our future

investigations.

I am encouraged by the meetings I have

attended, the papers I have heard, and by the

international efforts reported from the World

Health Organization and George Myers’ network.

The world is beginning to realize that many

of the issues we face with a growing aging

population are the result of the tremendous

progress mankind has made scientifically, technically, socially, and economically. Although the

increased longevity is a benefit, it has introduced

many other problems that rank on par with, if

not greater than, such issues as global overpopulation, environmental damage, and arms control. It is, therefore, very significant that we have

embarked on this issue, and it is important that

we persevere in this effort.

Many other progress reports and research

papers will emerge in addition to the proceedings. Some are already underway and even in

process for the scientific literature. I encourage

you in your efforts to document what we have

been doing. Both the public and the research

community need to receive the message that

these issues are important. Others may then

want to join us in this effort.

It has been nearly 3 years since the first

symposium, and it will likely be another 3 years

until we convene again. I am looking forward to

that 1994 meeting. There will be many problems

that will not be resolved and many issues that

will be even more difficult once we get into the

“nitty-gritty” of deciding some of the actual data

to be obtained. However, we should be able to

document a lot of progress, and I personally look

forward to that meeting and to welcoming each

and every one of you back and greeting new

faces. Thank you very much for your participation,

It has been a pleasure working with you.

●U.S.Government PrlntlngOffice 1993– 342-227/8COll 69
Vital and Health Statistics

series descriptions

SERIES 1.

SERIES 2.

SERIES 3.

SERIES 4.

SERIES 5,

SERIES6.

SERIES 10.

SERIES 11.

SERIES 12.

SERIES 13.

Programa and Collection Procedures –These reports

describethe data collection programs of the NationalCenter

for Health Statistics. They include descriptions of the

methods used to collect and process the data, definitions,

and other material necessary for understanding the data.

Data Evaluation and Methods Research –These reports

are studies of new statistical methods and include analytical

techniques, objective evaluations of reliability of collected

data, and contributions to statistical theory. These studies

also Include experimental tests of new survey methods and

comparisons of U.S. methodology with those of other

countries.

Analytical and Epidemiological Studies–These reports

present analytical or interpretive studies based on vital and

health statistics.These reports carry the analyses further than

the exposito~ types of reports in the other series,

Documents and Committee Reports–These are final

reports of major committees concerned with vital and health

statisticsand documents such as recommended model vital

registration laws and revised birth and death certificates.

Internatlonsl Vital and Heslth Statistics Reports –These

repofts are analytical or descriptive reports that compare U.S.

vital and health statistics with those of other countries or

present other international data of relevance to the health

statistics system of the United States.

Cognition and Survey Meaaurement–These reports are

from the National Laboratory for Collaborative Research in

Cognition and Survey Measurement. They use methods of

cognitive science to design, evaiuate, and test survey

Instruments.

Data From the National Health Interview Survey–These

reports contain statistics on illness; unintentional injuries;

disablli~ use of hospital, medical, and other health services;

and a wide range of special current health topics covering

many aspects of health behaviors, health status, and health

care utilization. They are based on data collected in a

continuing national household interview survey.

Data From the National Health Examination Survey, the

National Health and Nutrition Examination Surveys, and

the Hlapanic Health and Nutrition Examination Survey–

Data from direct examination, testing, and measurement on

representative samples of the civilian noninstitutionalized

population provide the basis for (1) medically defined total

prevalence of specific diseases or conditions in the United

Statesand the distributions of the population with respectto

physical, physiological, and psychological characteristics,

and (2) analyses of trends and relationships among various

measurementsand between survey periods.

Data From the Institutionalized Population Surveys–

Discontinued in 1975. Reports from these surveys are

Included in Series 13.

Data From the National Health Care Survey–These

reports contain statistics on health resources and the public’s

use of health care resources including ambulatory, hospital,

and long-term care services based on data collected directly

from health care providers and provider records.

SERIES 14,

SERIES 15.

SERIES 16.

SERIES 20.

SERIES 21.

SERIES 22.

SERIES 23.

SERIES 24,

Data on Health Resources: Manpower and Facilities –

Discontinued in 1990. Reports on the numbers, geographic

distribution, and characteristics of health resources are now

included in Series 13.

Data From Special Surveys–These reports contain

statistics on health and health-related topics collected in

special surveys that are not part of the continuing data

systems of the National Center for Health Statistics.

Compilations of Advance Data From Vital and Health

Statistics –Advance Data Reports provide early release of

information from the National Center for Health Statistics’

health and demographic surveys, They are compiled in the

order in which they are published. Some of these releases

may be followed by detailed reports in Series 10-13.

Data on Mortality-These reports contain statistics on

mortality that are not included in regular, annual, or monthly

reports. Special analyses by cause of death, age, other

demographic variables, and geographic and trend analyses

are included.

Data on Natality, Marriage, and Divorce–These reports

contain statistics on natality, marriage, and divorce that are

not included in regular, annual, or monthly reports. Special

analyses by health and demographic variables and

geographic and trend analyses are included.

Data From the National Mortality and Natality Surveys –

Discontinued in 1975. Reports from these sample surveys,

based on vital records, are now published in Series 20 or 21,

Data From the National Survey of Family Growth –These

reports contain statistics on factors that affect birth rates,

including contraception, infertility, cohabitation, marriage,

divorce, and remarriage; adoption; use of medics, care for

family planning and infertili~ and related maternai and infant

health topics. These statistics are based on national surveys

of childbearing age.

Comollations of Data on Natallty, Mortality, Marriage,

Divorce, and Induced Terminations of Pregnancy–

These include advance reports of births, deaths, marriages,

and divorces based on final data from the National Vital

Statistics System that were published as supplements to the

hforrth/y Vifa/ Statistics Repoti (MVSR). These reports provide

highlights and summaries of detailed data subsequently

published in Vita/ Stafisfics of the United States. Other

supplements to the MVSR published here provide selected

findings based on final data from the National Vital Statistics

System and may be foliowed by detailed reports in Series 20

or 21.

For answers to questions about this report or for a list of reports published

in these series, contact

Scientific and Technical Information Branch

National Center for Health Statistics

Centers for Disease Control and Prevention

Public Health Service

6525 Belcrest Road, Room 1064

Hyattsville, MD 20782

(301) 436-6500
DEP~TMENT OF

HEALTH &HUMAN SERVICES

Public Health Service

Centem for Disease Control and Prevention

National Center for Health Statistics

8525 Belcrest Road

Hyattsville, Maryland 20782

OFFICIAL BUSINESS

PENALTY FOR PRIVATE USE, $300

DHHS Publication No. (PHS) 93-1483, Series 5, No. 7