Sm. Sci. Med. Vol. 38, No. 1. pp. l-14. 1994 0277-9536194 S6.00 + 0.

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Printed in Great Britain. All rights reserved Copyright c 1993 Pergamon Press Ltd

THE DISABLEMENT PROCESS*

LOIS M. VERBRUGGE’ and ALAN M. JET-I-E’
‘Instituteof Gerontology, 300 North Ingalls, The University of Michigan, Ann Arbor, MI 48109-2007,
U.S.A. and *New England Research Institute, 9 Galen Street, Watertown, MA 02172, U.S.A.

Abstract-Building on prior conceptual schemes, this article presents a sociomedical model of disability,
called The Disablement Process, that is especially useful for epidemiological and clinical research. The
Disablement Process: (1) describes how chronic and acute conditions affect functioning in specific body
systems, generic physical and mental actions, and activities of daily life, and (2) describes the persorrel und
enuironmenrolfactors that speed or slow disablement, namely, risk factors, interventions, and exacerbators.
A main pathway that links Pathology, Impairments, Functional Limitations, and Disability is explicated.
Disability is defined as difficulty doing activities in any domain of life (from hygiene to hobbies, errands
to sleep) due to a health or physical problem. Feedback effects are included in the model to cover
dysfunction spirals (pernicious loops of dysfunction) and secondary conditions (new pathology launched
by a given disablement process). We distinguish intrinsic disability (without personal or equipment
assistance) and actual disability (with such assistance), noting the scientific and political importance of
measuring both. Disability is not a personal characteristic, but is instead a gap between personal capability
and environmental demand. Survey researchers and clinicans tend to focus on personal capability,
overlooking the efforts people commonly make to reduce demand by activity accommodations, environ-
mental modifications, psychological coping, and external supports. We compare the disablement
experiences of people who acquire chronic conditions early in life (lifelong disability) and those who
acquire them in mid or late life (late-life disability). The Disablement Process can help inform research
(the epidemiology of disability) and public health (prevention of disability) activities.

Key words-disablement, disability, function, age

INTRODUCTION medicine, and public health. A conceptual scheme is

a rudimentary scientific model that guides terminol-
In the mid and late life, chronic conditions tend to ogy, measurement and hypotheses. It is the basic
cross diagnostic thresholds, and individuals often architecture on which research, policy, and clinical
accumulate several of them (comorbidity). The most care are built.
common chronic conditions are nonfatal: For We begin by reviewing two contemporary
middle-aged and older women, the highest prevalence conceptual schemes, then state the extensions and
conditions include arthritis, high blood pressure, innovations offered in our model, named “The Dis-
chronic sinusitis, tinnitus, hearing impairments, ablement Process”. The Disablement Process: (1)
hay fever without asthma, chronic back conditions, describes how chronic and acute conditions affect
varicose veins, hemorrhoids, migraine headache, functioning in specific body systems, fundamental
cataracts, and visual impairments [l, 21. The only physical and mental actions, and activities of daily
fatal conditions in women’s top-15 titles (rankings life, and (2) describes the personal and environmental
of age-specific prevalence rates) are ischemic heart factors that speed or slow disablement; namely, pre-
disease, diabetes, and (at ages 75 +) atherosclerosis. disposing risk factors that propel dysfunction, inter-
For middle-aged and older men, fatal conditions have ventions inserted to avoid, retard or reverse it, and
higher prevalence rates and ranks than for women, exacerbators that hasten it. The importance of view-
but nonfatal conditions (the same titles as noted for ing disability as a gap between personal capability
women) still predominate. and environmental demand, and the problems in
Thus, people mostly live with chronic conditions embedding that perspective in empirical research, are
rather than die from them [3]. In both the short and discussed.
long run, symptoms and disability are the principal
outcomes, and they become the focus of protracted
BACKGROUND
personal and medical care.
This article presents a conceptual scheme for In the past decade, two conceptual schemes have
disability that has broad utility in social science, informed discussions and research on disability.
1. The International Classification of Impairments,
*Preparation of this article was facilitated by a Special Disabilities, and Handicaps (ICIDH) is a taxonomy
Emphasis Research Career Award (KOl AGO0394) from of disease impacts developed by the World Health
the National Institute on Aging to Dr Verbrugge. Organization [4]. It was designed to parallel the
2 Lots M. VERBRUGGE
and ALAN M. JETTE

International Classification of Diseases, the standard widely known, but it had stood up well to critiques
taxonomy of diseases used in medicine and health and gradually gained a strong following among
statistics. The ICIDH has three central concepts: disability researchers. An Institute of Medicine
Impairment, Disability, Handicap (Fig. 1). For panel, convened to consider disability prevention and
each, ICIDH provides an inventory of numerous policy, adopted Nagi’s basic framework. The panel’s
specific titles and their code numbers. The ICIDH published report [lo] has brought it rapid and
has facilitated international discussions of disable- great visibility; it is now often called the Institute
ment and it has promoted similarity in statistics of Medicine scheme. Other prominent scientific and
reported by nation states. Despite such political public health groups are adopting it [1 1, 121; an
acceptance, scientific researchers have had trouble exception is [13].
using ICIDH as a basis for hypothesis development Our model has its main foundation in the Nagi
and study design, citing problems of conceptual scheme, but it also draws on the scope and detail of
clarity, internal consistency, and measurement feasi- ICIDH and on public discussions comparing the
bility in surveys [5-71. Prompted by these and other two schemes. The Disablement Process model is an
critiques, the World Health Organization is currently extension and elaboration of the Nagi scheme that is
sponsoring preparation of an updated version; an especially useful for research design.
extensive revision will probably be launched soon In development of the Nagi and ICIDH schemes,
thereafter. the central focus was to delineate the pathway from
2. Another scheme was conceived and developed pathology to various kinds of functional outcomes.
by the sociologist Saud Nugi [7-91. It has four central The Disablement Process restates that pathway in
concepts: Active Pathology, Impairment, Functional language that suits medical and survey research, then
Limitation and Disability (Fig. 1). The concepts of puts most attention on predisposing and introduced
Functional Limitation and Disability cover essen- factors that speed up and slow down the pathway.
tially the same scope as ICIDH’s Disability. There is This is because in real life, the main pathway does not
no parallel concept for Handicap. Sociological theory occur in a pure untampered way. There are always
underpins Nagi’s work, not taxonomic interest. The social, psychological, environmental (etc.) factors
scheme has general intellectual scope that can operating to alter it. Increasingly, proponents of the
be adapted and operationalized in specific research Nagi and ICIDH schemes are turning attention
endeavors. Before the late 1980s Nagi’s work was not toward social and psychological factors that modify

“DISEASE” -> IMPAIRMENT -3 YZ_YUackof -ICAP

(theinhinsic (loss or abnormality (Qsadvantage due to
of psychological, abilitytopertbiman impairment or disability
activltylnncmlal tlUulinlitsorprevalts
manner) fulfiUmeaitofamnnalmle
orfunctionatorgan (depends on age. sex,
level) m&IcIllhlralfactors)
for the person)

--JIMPAIRMENT- FUNCI-lONAL ___) DISABILITY

:A%& (anatomical, physio- I&llTATION (lbnitaticutinp
(intuTuptionor logjcak mental, or (linllkulcminp of so&By deBned mks
ln&femnce with emotioMlabnomlal- at the level of the whole andtaskswithinasoeio
normalpro==, ities or loss) organismorpegon) cultural and physical
and efforts of the alvironment)

For the ICIDH, see [4]. Definitions above are simplified from the ICIDH text. For the Nagi scheme, see p-91.
‘lbe IOM scheme [ 10) has the same amcepts but diffaent &fining language (IUhology: “intmuptiar or
inteafeK!nceofnoimalbodl.ly pm=sesor!&lJctlKes”;Impaimlaln -lossarKUeeabnamalityofmait&enlotional,
pllysiologlcak or anatomical stnrtlrreorfimction:includes~loluesorpbnormalitia,notjustthoseattributnbleto
active pathology; also ineludes pain”; Functional Iimitatia~ “mstri&ori or la& of ability to p&xm an action or
activity in the mamu~ cawitfiintherangeconsidacdnasmalulat~Sfromimpairmmt”;DiJability “ln&iEtyor
limitation in paforming socially defined activities and roles exprictedoflnclivlcluals within a social and physical
environment”).
Fig. 1. Two conceptual schemes for disablement.
 The disablement process 3

the pathway. Our work joins and contributes to that genie pain syndrome, cerebral palsy and mental
current momentum. retardation.
2. Impairments are dysfunctions and significant
structural abnormalities in specific body systems.
THE DISABLEMENT PROCESS “Significant” means that the abnormality can have
consequences for physical, mental or social function-
“Disablement” refers to impacts that chronic and
acute conditions have on the functioning of specific ing. Impairments occur in the pathology’s primary
body systems and on people’s abilities to act in locale, but they may also occur in secondary locales,
necessary, usual, expected and personally desired either immediately or delayed. (For example, diabetes
ways in their society. The term “disablement” is has primary impact on the metabolic system. but
general, covering all consequences of pathology for it can also affect cardiovascular, renal and other
functioning. The term is routinely used by United systems.) Minimal (subclinical) pathology may not
Kingdom and European researchers; it may be new produce any impairment in its body system; pathol-
to some North American readers. The term “process” ogy in remission may also show no current impair-
reflects interest in the dynamics of disablement; that ments. Typically, pathology that has crossed defined
is, the trajectory of functional consequences over time clinical thresholds and been given a diagnosis does
and the factors that affect their direction, pace, and have manifest impairments.
patterns of change. Medical procedures to evaluate impairments
In this article, we shall emphasize chronic include clinical examination, laboratory tests, imag-
conditions and their long-term, but not necessarily ing procedures and patients’ medical history and
static, consequences. That is the most common symptom reports. The results are used directly
health situation in mid and late life, and the aspect to score severity of pathology. (As noted above,
of most interest to gerontology. But the model is when necessary, they are also used to ascertain
not limited to chronic conditions and their sequelae. presence of pathology.) Many of the clinical evalu-
It is also applicable to acute conditions and the ation procedures for impairments can be successfully
brief disability associated with them (such as a head transferred to home surveys (examples in Refs
cold that causes several days of work absence). And [ 13, 14]), and this is a current goal of epidemiological
it is applicable to lifelong disability due to childhood research.
and youth-onset conditions (such as mental retar- 3. Functional limitations are restrictions in per-
dation or spinal cord injury); we discuss this issue forming fundamental physical and mental actions
later. used in daily life by one’s age-sex group. These are
generic actions, recruited in many specific circum-
stances. They indicate overall abilities of body and
THE MAIN PATHWAY mind to do purposeful ‘work’. Fundamental physical
(body) actions include overall mobility, discrete
A. Pathology and its functional consequences
motions and strengths, trouble seeing, trouble
The main pathway from pathology to disability hearing and trouble communicating; examples are
is shown in Fig. 2. We now define the four con- walking, lifting objects, climbing stairs, reading
cepts, discuss how they are measured, and give standard-size print and hearing other people speak in
examples. a room. Basic mental (mind) actions include central
1. Pathology refers to biochemical and physiologi- cognitive and emotional functions; examples are
cal abnormalities that are detected and medically short-term memory, intelligible speech. alertness in
labeled as disease, injury or congenital/developmental daytime activities, orientation in time and space and
conditions. Chronic pathology encompases pro- positive affect. In short, such physical and mental
gressive diseases, injuries with longterm sequelae, actions constitute the basic interface between a
and enduring structural/sensory abnormalities. Acute person and the physical and social milieux in which
pathology is short-term diseases and injuries, usually s/he does daily activities.
~3 months in duration. Tests of physical and mental actions have various
Abnormal biochemical and physiological changes formats: (i) self-reports or proxy reports (spouse,
are deeply “interior”, and they are not always parent, personal physician, etc.) of difficulty doing
directly measurable in contemporary medical prac- an action (no difficulty, some, a lot, unable); (ii) an
tice. Detection of pathology often relies on evaluation interviewer’s observation of the subject doing an
of more-manifest signs and symptoms (Impairments; action, with a rating of her/his performance (fully
see next paragraph). Abnormalities that cross defined able, partially able, unable) or sometimes counts
thresholds of clinical significance constitute a “diag- (of steps, of repetitions before fatigue, etc.); and
nosed condition”. Patients, survey respondents (iii) equipment-based evaluation of performance,
and medical records report diagnoses; this is the including timed tasks. All measure a person’s ability
public language of pathology. Examples of pathology to do tasks “on your own”. This always means
(stated as diagnoses) are osteoarthritis, lung cancer, “without someone’s assistance”; sometimes it
cataracts, tinnitus, Alzheimer’s disease, vertebro- also excludes regularly-used devices (cane, glasses,
 LOIS M. VERBRUGGEand ALAN M. JETTE

EXTRA-INDIVIDUAL FACTORS
MEDICAL CARE & REHABILITATION
(surgery, physical therapy, speech therapy, counseling,
health education, job retraining, etc.)

MEDICATIONS & OTHER THERAPEUTIC REGIMENS

(drugs, recreational therapy/aquatic exercise,
biofeedback/meditation, rest/energy conservation, etc.)

EXTERNAL SUPPORTS
(personal assistance, special equipment and devices,
standby assistance/supervision, day care, respite care,
meals-on-wheels, etc.)

BUILT, PHYSICAL, & SOCIAL ENVIRONMENT

(structural modifications at job/home, access to buildings and
to public transportation, improvement of air quality, reduction
of noise and glare, health insurance & access to medical cam.
laws & regulations, employment discrimination, etc.)

L
THE MAIN PATHWAY
PATHOLOGY~IMPAIRMENTTS - FUNCTIONAL -DISABILITY
(+gnoscs.of (dysfunctions and LIMITATIONS (difficultydoingactivities
z&$Ju’y, structural abnormalities (restrictions in basic of daily life: job, household
in specific body systems: physical and mental management, p?rsonal care,
developmemJ musculoskeletal, actions: ambulate, reach, hobbies, active rccmation,
condition) cardiovascular, stoop, climb stairs, chrh~ sociaIizing with
neurological, etc.) produce intelligible speech, friends and kin, childcare,
see standard print, etc.) errands, sleep, trip9 etc.)
I,

RISK / INTRA-INDIVIDUAL FACTORS

FACTORS
$gg!Q. LIFESTYLE & BEHAVIOR CHANGES
(overt changes to alter disease activity and impact)
demographic,’
social, lifestyle, PSYCHOSOCIAL ATTRIBUTES & COPING
behavioral, (positive at%& emotional vigor, prayer,
psychological, locus of control, cognitive adaptation to one’s
situation, confidant, peer support groups, etc.)
biological)
ACTIVITY ACCOMMODATIONS
(changes in kinds of activities, procedures for doing
them, frequency or length of time &ii them)

Fig. 2. A model of The Disablement Process.

wheelchair, etc.; “without equipment assistance”). such evaluations, especially in household surveys, is
Over the past decade, there has been marked shift in uncertain now; many researchers are engaged in work
scientific preference and data collection from self- on such technology.
reports to performance-based measures [ 161. Some- 4. Disability is experienced difficulty doing activi-
times respondents are asked to perform tasks in ties in any domain of life (the domains typical for
a standardized manner (using instructions and one’s age-sex group) due to a health or physical
props), sometimes in their own usual way (no special problem. Our definition contains two important and
instructions or props). Current performance-based novel features:
protocols use a mixture of interviewer ratings, First, chronic conditions can affect any activity
counts and timed tasks. Such protocols are in the domain, from hygiene to hobbies, from errands to
National Health and Nutrition Examination III, sleep. Current studies often focus on just 3 domains:
the MacArthur Project on Successful Aging, and the personal care (basic activities of daily living; BADL
Established Populations for Epidemiologic Studies of or ADL), household management (instrumental
the Elderly. Whether there will be further shift activities of daily living; IADL), and job (paid em-
toward sophisticated, lightweight equipment for ployment). ADLs are abilities to eat, toilet, transfer
 The disablement process 5

(get in and out of bed/chair), dress and bathe. IADLs disability. not disability itself. And we see no added
are abilities to prepare own meals, do light house- virtue in an objective item, since subjective ones
work, manage own money, use the telephone, and reveal the experience of disability in apt and direct
shop for personal items. ADLs are necessary for manner. In short, a dependency indicator should be
survival; IADLs are necessary for maintaining a used for exactly what it is (an intervention). not as
dwelling in a given sociocultural setting.* But there a proxy for something that can be asked directly
are other common and valued domains of activity: anyway.
house and yard chores (besides those noted as How is disability measured? The standard, and
IADLs); shopping and errands; job (paid employ- only economical, procedure is to interview individ-
ment); sleep; care for children and others; hobbies uals about difficulties (self-reports or proxy reports).
and other leisure at home; active sports and physical with simple ordinal or interval scoring of degree-of-
recreation; entertainment away from home; religious difficulty. An alternative is to observe performance
services or activities; public service/clubs/adult edu- of an activity in the person’s usual milieu, but
cation; socializing with friends and relatives; local this approach is very time-consuming. This is es-
transportation; and distant trips. Why the limited pecially true for activities done outside the home,
scope exists and persists, and why an expanded scope such as shopping, since the interviewer and subject
is desirable, are discussed in Ref. [17]. must venture forth together for the performance
We adopt a comprehensive and more democratic assessment. Moreover, how to score restrictions
view of human activities. Disability questions for all can be troublesome; interviewers must rate degree
domains should be crafted or at least fairly con- of difficulty according to some known standards,
sidered [18]. Presumptions that some domains matter and operational rules for timing an activity and its
more than others should be abandoned, or at least components can be cumbersome.
openly stated when they are held. (As a telling
B. The difference between functional limitations and
illustration, an older professor acquaintance with
disability
rheumatoid arthritis had to abandon his favorite
hobby, making pots. This was the most distressing The words “action” and “activity” are simple
impact of the condition on his life.) Data covering devices to distinguish the concepts of functional
obligatory, committed and discretionary aspects of limitations and disability. They help convey the
daily life reflect the pervasive nature of disability in generic (situation-free) features of one and the social
real-life; more restricted choices of domains simply (situational) features of the other. The words “task”
cannot do so. vs “role” also help distinguish the concepts. Both
Second, the fundamental feature of disability is pairs in terms were coined by M. LaPlante [19].
difficulty doing activities in one’s regular milieux. This distinction has been recognized and described
Disability is measured in simple, direct manner by by others: “Functional limitations refer to individual
self-reports or proxy reports about degree of diffi- capability without reference to situational require-
culty (none, some, a lot, unable). By contrast, ments” [6]. “Disability [is] a social process--the
many studies use dependency (having someone’s help pattern of behavior arising from the loss or reduction
to do an activity) as the fundamental indicator of of ability to perform expected or specified social
disability.? There are two reasons: Dependency pre- role activities of extended duration because of
sumably indicates “severe difficulty”, and it is con- a chronic disease or impairment” [6]. “Disability
sidered a more credible, reliable indicator of severity refers to the expression of a functional limitation in
than a question about difficulty. Although this senti- a social context” [IO]. These echo Nagi’s initial
ment is common in current research, we think it statement: “Disability [is] a pattern of behavior
causes theoretical and empirical confusion. What that evolves in situations of long-term or continued
dependency really measures is presence of an inter- impairments that are associated with functional
vention to reduce disability. It measures a buffer to limitations” [8].
Functional limitations and disability refer to
different behaviors, not to different aspects or ways
*In gerontology discussions, it is often stated that IADLs
are necessary for “independent living” in a society. We of measuring the same behavior. Explicating this
have chosen to use other descriptors since “independent point: (1) Some researchers characterize functional
living” has a different, and very distinctive, meaning limitations as “can do” and disability as “do do”.
among persons with lifelong disability [42-U]. The words separate a person’s capabilities from
tThe standard question about dependency is: if a person
has someone’s help to do an activity. (Sometimes the
her/his ultimate patterns of behavior. The researcher
wording is “needs help” rather than “has help”.) The is really interested in measuring two aspects of the
scope of dependency can be broadened to include same behavior, not two different behaviors. (2) In a
standby assistance (if someone must be present in similar vein, current interest in comparing verbal
case the person needs help) and supervision (if someone reports and performance-based evaluations is
must provide supervision for the peison to accomplish
an activity). Occasionally, it is stretched still further a matter of different measurement strategies for
to include use of special equipment (cane, wheelchair, a given concept. For example, a person’s rating of
etc.). own walking ability can be compared to interviewer
6 LOISM. VERBRUGGE
and ALANM. Jrm

ratings or timed performance of walking. The content The problems of bedlam vocabulary and mixed
throughout is “walking”; the differences are in modes protocols will fade as the research community
of measurement. develops more conceptual consensus.
What is the conceptual niche for personal
care (ADL) and household management (IADL)
D. Measurement issues
behaviors? They are aspects of disability, not of
functional limitations. ADLs and IADLs are activi- We have discussed how the Disablement Process
ties a person does as a member of society-ven if concepts are usually measured. Here, we note
they occur in private, rather than public, settings! three general issues about measurement that
Each depends on some basic physical and mental researchers debate: (I) What constitutes appropriate
capabilities (functional limitations). ADLs and detail in scores? (2) Should dysfunction (nega-
IADLs are not “physical functions”. a label that tive valence) or function (positive valence) be
appears quite often in the literature. To reinforce this measured? (3) Why are functional limitations so hard
point, readers might consider if bathing/showering to measure?
(ADL) is more akin to visiting friends than to lifting 1. Precision. Continuous scores that tap full ranges
a IO-pound object, or if doing light housework of ability found in a population are desirable. Their
(IADL) is more similar to attending a movie than to utility for both scientific analysis and public health
hearing speech in a small room. These comparisons statistics is enhanced, compared to ordinal scores.
are chosen to challenge thinking, not steer it. We Researchers can choose whether to develop predic-
believe that assignment of ADLs and IADLs to tion models of high or low function; by contrast,
disability has conceptual integrity, but recognize that ordinal scores with few categories can prove too
some researchers disagree. gross-grained for use as predictors or as dependent
variables in scientific analyses. Public health officials
C. Bedlam vocabulary and mixed protocols can choose various cutpoints for determining dis-
In the absence of a well-accepted conceptual ability prevalence in the population. Tests with
scheme, the scientific literature on disability contains continuous scores may cost more in training, equip-
a bedlam vocabulary. Terms have been invented and ment and administration time. but their value also
operationalized in myriad ways. Common terms such rises.
as disability, impairment and functional limitations 2. Negative and positive valences. The concepts
have various and overlapping meanings.* The same of impairment, functional limitation and disability
occurs for dysfunction, incapacity, disablement and are all worded in negative manner; they refer to
handicap. Combining words usually obscures rather dysfunction or low function. This negative valence is
than illuminates the matter (e.g. “functional dis- the classic perspective of medical and public
abilities” [20]; “impaired physical functioning in daily health research; we want to know who has problems
living activities” [21]). Energy and alertness on and why? Alternatively, one can study successful
readers’ part are necessary to understand terms being aging [26], focusing instead on rates and prediction
used. of high function; who is doing very well and why?
The problem is compounded by research protocols This is positive valence. Continuously-scored items
that combine items from different concepts. For with full range can be used for either a negative
example, impairment and functional limitation items or positive orientation. Ordinal ones often emphasize
often occur together [22,23] or mobility and ADL one orientation (e.g. no difficulty, some, a lot,
items [24]. The mixing happens for many reasons unable) and are thus unattractive to researchers of
(field efficiency, available equipment, the relative the other.
importance of functional outcomes to other topics); 3. Measuring functional limitations. Researchers
conceptual confusion is nor necessarily the cause. have encountered problems in designing protocols
Fine examples that have conceptual integrity are for functional limitations. In real life, basic physical
Tinetti’s tests of gait and balance [25]; their content and mental abilities do not occur solo, but are
is entirely functional limitations (gait test) or impair- combined into doing specific activities. As a result,
ments (balance test). researchers are sometimes compelled to choose items
for these generic abilities that, on the surface, look
like they measure disability, not functional limi-
*One of the most troublesome examples 1s Impairment. tations. For example, a test on “bringing a comb
(1) In the United States, the National Center for Health
to one’s head” may be intended to measure “reach-
Statistics uses the term for longterm structural/sensory
abnormaliites. These are viewed as chronic conditions ing” ability (functional limitation), not “comb
and given ICD-like codes, in the same way chronic hair” (disability). Similarly, a test to button a jacket
diseases are given ICD codes. Thus, impairments sit may be intended to measure “pinch” actions, not
within the overall concept of Pathology. This usage is “dressing oneself”. When this approach is unavoid-
longstanding and unlikely to change. (2) By contrast, the
Disablement Process and other disability schemes able, researchers must be careful to clarify their
(ICIDH. Nagi) use the term impairment for the initial conceptual intent in reports, rather than leave the
functional consequences of Pathology. matter unclear.
 The disablement process

1. Quality of Life

DISABILITY 6-J DIRE AND GLOBAL OUTCOMES

(hospitalization, institutionalization, death;
global wellbeing, happiness, life satisfaction)

2. Secondary Conditions and Dysfunctions

Within a Disablement Recess:

PATHOLOGY IMPAIRMENTS FUNCTIONAL DISABILITY

LIMITATIONS

A New Disablement Process:

I
PATHOLOGY IMPAIRMENTS FUNCTIONAL DISABILITY
LIMITATIONS

Fig. 3. Other outcomes.

OTHER OUTCOMES a particular disablement process, from those that

launch new pathology and its consequences.
Over time, the disablement process can prompt (1) Within a disablement process. Feedback loops
some global outcomes and two kinds of feedback are common for frail or longtime-disabled persons.
effects. For example, a woman with painful arthritis may
I. Quality of life. Disability is a precursor for restrict her recreational walking (disability); this
important outcomes such as hospitalization, institu- eventually reduces her cardiopulmonary function and
tionalization, and death. It also has a powerful effect induces muscle weakness (feedback effects to impair-
on happiness, life satisfaction, and other global well- ment), further reducing mobility and social activities
being indicators. These ensuing outcomes stand to (functional impairment and disability). Loops like
the right of Disability (Fig. 3).* this can become vicious spirals; a flareup or a fall can
2. Secondary conditions and dysfunctions. A cause swift interrelated declines in many systems,
given disablement process can lead to downward- eventuating in institutionalization or death. (2) A new
spiraling functions, and sometimes even prompt disablement process. Clinicians who help longtime-
new pathologies and their associated dysfuncti0ns.t disabled persons focus intently on preventing new
All of these are feedback effects, visualized as arrows pathologies causally induced by a prior condition,
pointing right to left-from Functional Limitations its dysfunctions, or medical therapy. Examples are
or Disability toward any concept to its left (Fig. 3). diabetes retinopathy (directly related to diabetes)
We distinguish feedback effects that occur within and bed sores (due to bed disability for an initial
condition). Medical professionals may visualize
the situation chronologically (a primary disablement
process with a secondary one strung to its right),
*The Institute of Medicine report includes “quality of life”, while researchers see it as feedback loops from
but places it in a more ambiguous position [lo]. an initial process back to a new one (Fig. 3).
tThe Institute of Medicine report uses the term “secondary
conditions” very inclusively to cover all feedback effects, In disability discussions, it is becoming clear that
whether they involve pathology, impairment, functional researchers must find ways to detect secondary
limitation, or disability [lo]. conditions/dysfunctions and distinguish between the
8 LOISM. VERBRUGCE
and ALAN M. JET-IF

two types (within a disablement process vs a new of the main pathway. Generally. medical inter-
one). Longitudinal analysis techniques now exist to ventions work on the left side (pathology and
handle feedback effects. impairments); personal and allied health profession
interventions work on the right side (functional hmi-
tations and disability); and societal interventions
work on the far right side (disability).
RISK FACTORS, INTERVENTIONS AND
EXACERBATORS 3. Exacerbators are less common than interven-
tions, but they can have great power in prompting or
A. Key social concepts maintaining dysfunctions. Exacerbators happen in
The main pathway from pathology to disability three ways: (1) Interventions can go awry: for
posits a “natural” sequence of events. One can think example. drugs have side effects and surgery can
of the main pathway as a set of probabilities, or make matters worse. (2) In response to their health
effects, that occur if a chronic condition operates in and function problems. people sometimes adopt be-
a social vacuum, with only medical factors operating. haviors or attitudes that have pernicious conse-
This is scarcely true. We now extend the model so it quences, actually increasing their limitations and
attains full sociomedical scope. disability. Examples are fear of falling. increased
Certain longstanding behaviors or attributes elev- alcohol intake, anger at disease. (3) Society often
ate the chances of functional limitation and disability, places impediments in the path of limited/disabled
when chronic conditions occur and progress; these people so they cannot do the things they want and are
are risk factors. Certain overt actions taken in able to do. Examples are inflexible work hours.
response to disease/dysfunction reduce those chances, architectural barriers, social prejudice and dis-
while others actually increase them; these are inter- incentives from employment that exist in disability
oentions and exacerbators, respectively. insurance programs. This third form is the essence
1. Risk factors are defined in standard epidemio- of “handicap”, or “social disadvantage”.
logical manner. They are demographic, social, life- Some exacerbators are introduced during the dis-
style, behavioral, psychological, environmental and ablement process, in direct response to it (the first and
biological characteristics of an individual that can second forms), while others are predisposing (the
affect the presence and severity of impairment, func- third form). All have negative consequences for func-
tional limitation and disability. They are pre- tioning, certainly unintended (the first and second
disposing; that is, they exist at or before the outset of forms) or of debated intent (the third form). In
the disablement process. They are usually long-term designing research, we should always consider the
or permanent features of individuals, because those nemesis presence of exacerbators and include likely
are the sorts of causes that prompt chronic conditions suspects.
and enduring impacts.
In Fig. 2, risk factors are placed on the left side,
B. Intrinsic and actual disability
signaling their predisposing status.
2. Interventions to reduce restrictions/difficulties Personal assistance and special equipment are
are made by individuals on their own and by others common, efficacious interventions used to reduce
(medical professionals, legislators, etc.). They serve the impact of functional limitations on disability.
as “buffers”. Interventions include medical care (“Personal assistance” includes both humans and
and rehabilitation, medications and other therapeutic trained animals.)
regimens, external supports (personal assistance, The difference between a person’s intrinsic ability
special equipment and devices), modifications of (difficulty doing Activity X without personal or
the built/physical/social environment, lifestyle and equipment assistance) vs actual ability (difficulty with
behavior changes, psychosocial attributes and personal or equipment assistance) can be very great.
coping, and activity accommodations. They are not For example, morning help to button clothing or
predisposing, but instead are inserted during the special fasteners can keep a person dress in ‘suitable’
disablement process in an effort to avoid, retard or manner for a high-profile executive job. Using a cane
reverse outcomes. They are numerous, changeable can improve outdoor mobility, making it possible for
and often multiple (co-existing). The timing of their someone to continue attending movies, concerts and
effects may be immediate, delayed, or cumulative. church services.
These diverse features make estimating the effects of Contemporary surveys tend to ask only about
specific interventions problematic in observational intrinsic disability. A typical question is: “By yourself
(that is, nonexperimental) research. and without using special equipment, do you have
The locus of action for interventions can be intra- difficulty [doing Activity Xl?” Surveys ignore how
individual (they spring from or operate within a well a person is actually doing with assistance (per-
person) or extra-individual (they are performed or sonal or equipment); that is, her/his actual disability.
inserted from outside her/him). This distinction is so This has prompted great complaint by disability
basic and important, we use it to portray buffers in rights advocates. They note that many profoundly
Fig. 2. Interventions can operate on all four features impaired individuals acquire external supports
 The disablement process 9

that allow them to function very adequately. They DISABILIT’Y AS A GAP BETWEEN PERSON
AND ENVIRONMENT
demand that statistics report not only their intrinsic
disability but also their (lesser) actual disability, for So far, the discussion implies that disability is a
which they are justly proud. An appropriate question personal feature, in the same way as age or occu-
to capture actual disability is: “All in all, with [types pation. In truth, disability is not inherent in a person.
of external support], do you have difficulty [doing Instead, it denotes a relationship between a person
Activity Xl?” and her/his environment (also Refs [6 and 71). Dis-
Although the complaints arise from those with ability occurs for a given activity when there is a
lifelong disability, they are equally apt for late-life gap between personal capability and the activity’s
disability. Older persons with chronic conditions demand. Disability can be alleviated at either side, by
also strive to overcome intrinsic disability by use of increasing capability or by reducing demand.
personal and equipment assistance, and they are In medical and public health settings, discussions
often very successful. tend to focus on interventions that will improve or
The distinction between intrinsic and actual maintain people’s capability. This ignores the import-
disability is not esoteric. It has strong implications ance and malleability of demand. In real life, efforts
for public health statistics, for design and develop- to reduce demand are a common feature of the
ment of disability technology, and for long-term care disablement process. Disability can be diminished
policy. swiftly and markedly if the physical or mental
demands of a given task are reduced.
EXAMPLES OF THE DISABLEMENT PROCESS To reduce demand, the options are activity accom-
modations, environmental modifications, psycho-
We illustrate the disablement process by three social coping, and external supports. (I) Activity
examples. accommodations. In the presence of disease or
1. A woman age 74 with osteoarthritis in both dysfunction, people modify their activities to
hands (pathology) has weak grip and restricted reduce the physical and mental demands posed.
finger flexion (impairments). This causes difficulty in Accommodations can involve “what, how, how long,
grasping and rotating fixed objects (functional how often”. More formally, these words mean:
limitations), and she has trouble opening jars or the specific activity, procedures to do it, amount
doors (disability). She purchases kitchen devices and of time spent, and frequency of doing it. Examples
special door handles (interventions) to overcome the are: A man with rheumatoid arthritis quits a high-
difficulty. stress management job and becomes a free-lance
2. A man age 52 with advanced emphysema (path- editor [“what”]; a woman with osteoarthritis shifts
ology) has very restricted lung capacity and feels from knitting with small needles to big ones [“how”];
perpetually tired (impairments). He cannot climb a man with scleroderma decides to spend more
stairs or walk for more than several minutes (func- time brushing his teeth and less time grooming his
tional limitations). He is finally forced to quit his job hair [“how long”]; and a woman with diabetes
as a foreman (disability). decides to travel just once a year to visit her children
3. A woman age 90 has no specific diagnoses rather than twice a year [“how often”]. (2) Built,
(pathology), but her sight, hearing, and senses of taste physical and social environment. Modifications of
and smell have diminished significantly in recent the built environment, changes in ventilation, heat
years and she is forgetful and feels confused (impair- and light, social attitudes and social laws can reduce
ments). Gradually she stops socializing (disability) demand sharply. Examples are: A woman has
and becomes deeply depressed (quality-of-life out- handles installed in the bathtub; a man moves to
come). She spends most of the time tearful and seated a house without stairs; an employer buys special
(functional limitations; feedback effects from dis- furniture for employees with chronic back pain; a
ability). Her physical frailty steadily increases (im- city offers special bus services for mobility-limited
pairment; feedback effect from functional limitation). persons or makes its entire fleet accessible; laws
One night she dies while sleeping. prohibit employment discrimination for disability.
The conceptual scheme’s atpness and flexibility (3) Psychosocial coping. Persons with chronic
become apparent with its use in discussion and conditions and dysfunctions gradually accept some
research. Initially, it may be difficult to decide which of the symptoms and limitations. This can occur
conceptual niches fit one’s variables of interest. through private paths (prayer, rethinking life’s pur-
That does not reflect a flawed scheme, but instead pose and value) or more social ones (peer support,
diverse professional orientations and conventions, confiding in someone). These coping behaviors serve
the specific pathology or research questions being to alter a person’s standards about how s/he should
studied, and the complex interwoven nature of late- “be” and “behave”; they help create a new definition
life health. (For instance, depression can be especially of self that is “less demanding”. (4) External sup-
difficult to place; it can represent pathology or func- ports. Personal assistance and special equipment
tion or quality-of-life, depending on the specific operate at the immediate periphery of a person,
research topic.) and whether their effect is to reduce demand or to
IO LOISM. VERBRUCXE
and ALANM. JETTE

augment capability is somewhat ambiguous. This for samples and interviews of individuals. and this
ambiguity is keenly felt by disabled persons. Adopt- inevitably steers scientific questions to be framed
ing external supports (especially personal assistance) from that perspective. (3) The notion of demand has
is psychologically difficult, because they affect self- been captured in qualitative research on coping with
definition, public labeling, and public behavior chronic disease [31. 321. But how to measure it in
towards a person. In this article, we shall view quantitative manner has perplexed researchers. Are
external supports as demand-reducing. there compact ways to describe built. physical and
The Disablement Process diagram in Fig. 2 social environments? Can personal interviews yield
includes these demanding-reducing interventions, but reliable and valid responses about the environment?
it does not highlight their distinctive nature. The Do people know of and remember the activity accom-
diagram has a person-centered emphasis. Environ- modations they have made over time [ 18]? Finding
mental aspects are not emphasized. Figure 4 redraws efficient strategies to assess current demand and
the model from a person-environment perspective. It changes in demand over time is on survey researchers’
gives better visual balance to the dual importance of agenda.
these realms for disablement. “Person-environment fit” models have been pro-
Why does the person-centered perspective exist and posed in the social sciences [33-361 for topics other
persist so strongly in science? There are three reasons. than disability. This literature should be sought out
(1) Medical perspectives have enduring, and often as disability researchers consider the importance and
unconscious, influence in health research. Medicine measurement of demand.
aims to influence pathology and impairment by The person-centered focus has been successfully
drugs, surgery and other therapeutic modalities that removed in one discipline, human factors research.
act on individuals’ soma and psyche. Social scientists It gives equal attention to person. physical environ-
extend this purview to include demographic, social ment and machine environment to understand per-
and psychological characteristics that affect pathol- formance problems [37-40]. Remedies are considered
ogy, impairment and other functional outcomes. and applied to the capability side (person). the de-
Although this improves scope, the person still mand side (environment) or both. Adopting a human
remains at center stage and the medical model is factors approach in disability research is feasible for
still in force [27-301. (2) Surveys are the standard very specific questions [41], particularly those with an
technique for obtaining information about health and applied engineering flavor; e.g. “What kitchen equip-
disability. Survey methodology is well developed ment can help older persons with arthritis prepare

INTRA- & EXTRA-lNDIvIDUAL.

FACIORS THAT AFFECT DEMAND:
Modifications of Built, Physical, & Social Environment
Activity Accommodations (what, how, how often, how long)
Bxtemal Supports (personal assistance, special equipment)
PsychosociaI Attfibutes & Coping

TASK ENVIf$ONMENT: DEMAND

\
\
\
.\
PATHOL.OGY ~IMF’AIRMENTS - FUNCIIONAL - >DISABILIIY
LIMITATIONS ,
/
/
/
/
/
PERSO’N: CAPABILITY
I.

INTRA- UC ExiRA-lND1vIDuAL
FACTORS THAT Al=I=BCTCAPABILITY:
MedicalCare& Rehahihtaticm
Medications&OtherlhempeuticRegirnens
Lifestyle & Behavior Changes

Fig. 4. Disability as a gap between capability and demand

 The disablement process I1

meals easily?‘. It is simply not feasible for the sorts and an elderly disabled person who has done SO is
of general questions posed in this article. indubitably vast.
Nevertheless, the importance and fundamental A good model of the disablement process should
veracity of seeing disability as a relationship, not a encompass both lifelong and late-life disability.
personal characteristic, must be kept firmly in mind The conceptual scheme in The Disablement Process
as we go about doing person-centered research. is suitable for both experiences, but the relative
importance and dynamics of the conceptual pieces
LIFELONG AND LATE-LIFE DISABILITY
vary greatly for the two situations.

Disability is an experience that spares no age EPIDEMIOLOGY AND PREVENTION OF DISABILITY

group. We use the terms “lifelong” and “late-life” to
designate when a serious chronic condition begins: in The disablement model extends traditional epi-
childhood or youth vs mid or late life. That timing demiological, medical and public health perspectives
makes a great difference in the nature and duration so that they focus on functional outcomes. It offers
of the disablement experience. an architecture for research design and for appli-
The usual causes of lifelong disability are cations of research results in health policy and
congenital/developmental conditions and severe medical care.
injury in childhood or youth. Disability is often
profound, pervasive and (for injuries) rapid in onset. A. Research: the epidemiology of disability
By contrast, the usual causes of late-life disability The epidemiology of disability is the study of
are chronic diseases, whose usual onset is at disease consequences rather than disease etiology,
middle or older ages. Disability tends to be mild using the perspectives and techniques of social epi-
or moderate, initially restricted to a few activity demiology. (The term “epidemiology of disability”
domains but expanding over time, and slow to was coined, we believe, by Nagi [45].) Succinctly
accumulate. stated, the focus is P{Disability]Dise.ase}, not
There are many differences in the disablement P{Disease}; P is probability. Observational studies
process for the two groups. Lifelong disabled persons can uncover presumptive causes of dysfunction
do not enjoy the expansion of skills and activities in for specific diseases or populations. They suggest
adult years, or the total diversity of lifetime experi- interventions whose efficacy can be studied by exper-
ences, as their nondisabled peers. For many, the imental research in clinical or community-dwelling
issue of activity accommodation is effectively moot. populations. Ultimately, observational and exper-
Capabilities are very restricted and usually stable (not imental research guide public health policies and
easily or at all remediable). Demand looms large for programs.
virtually any activity. In this situation, attention
focuses on external supports and on environmental B. Policy and care: the prevention of disability
and social access. High quality and reasonable The term “prevention of disability” is becoming
expense for equipment are paramount concerns. popular, an indication of increasing concern among
Achieving personal control after years of dependency public health professionals and clinicians about
is a courageous goal; it is the central theme of the people’s functioning in the presence of disease, not
independent living movement [42-M]. Access to just the onset and course of disease and fatal out-
buildings, vehicles and jobs is demanded as a basic comes.
social right. For very good reasons, a constant plaint There is a well-established typology of prevention
of lifelong disabled persons is “Change the milieu, strategies used in medicine and public health that
not me!“. describes where professional efforts are aimed
By contrast, late-life disablement is a gradual [46,471. Primary prevention aims to avert onset of
process, and people devote attention to restoring the pathology. Secondary prevention is early detection
capabilities they once enjoyed and recall very well. and management of pathology. Tertiary prevention is
Their diverse experiences and adaptations to other interventions to re&+ce disease impacts; it includes
troubles over a lifetime serve as resources when efforts to avoid onset of secondary conditions, to
activity accommodations need to be made. External sustain life (heroic care), and to maintain and restore
supports come into daily life gradually, and problems function (“prevention of disability”). The broad
of access are more limited. The disablement process sweep of tertiary prevention-it encompasses
involves gradual adjustment and a good deal of functional limitations, disability, dire and global out-
personal choice. At the extreme-when capabilities comes, feedback effects-reflects the relative dis-
are greatly reduced by disease, external supports interest in disease consequences that characterized
are present and critical, and mobility is greatly medicine earlier in this century when the words
diminished-late-life disability comes closest to look- were coined. Some researchers propose that “tertiary
ing like lifelong disability. . . . But the sentiment prevention” now be limited just to disease-related
is never the same; the difference between a young efforts (avert secondary conditions and avert death)
disabled adult who yearns to experience life’s delights and that the term “quatemary prevention” be used
12 LOISM. VERBRUCCE
and ALANM. JETTE

PRIMARY SECONDARY
PREVENTION PREVENTION

’ PATHOLOGY 1 IMPAIRMENTS -b- DISABIUTY

LIMITATIONS

TERTIARY
PREVENTION

Fig. 5. Prevention strategies.

for function-related efforts (maintain and restore higher for women than men in a given age group.
function).* There are many likely reasons; key ones are women’s
Figure 5 shows the position, or timing, of the four higher average number of chronic conditions and
types of prevention in the disablement process. their higher prevalence rates of nonfatal conditions
Primary prevention acts ahead of pathology, sec- [l, 2, 55). Even without fully knowing those reasons.
ondary before impairment, tertiary on feedback we can expect rising disability prevalence as the older
effects for new pathology and new impairment, population becomes more female. The numbers of
and quaternary before functional limitations and disabled persons will rise due to the combination of
disability. increased age-specific disability prevalence rates (just
The goal of disability prevention is to sustain and discussed) and overall population aging (which swells
restore functional capacity and to maximize older the number of persons with chronic conditions and
person’s social involvement and independence. their associated dysfunctions).
Primary and secondary prevention are the desirable The need for research and health policy on dis-
strategies; they protect against potentially disabling ability is discussed in recent reports [ 10-121. Adopt-
pathology and impairments. Efficacious interven- ing a similar conceptual architecture. they are helping
tions for those stages will evolve as knowledge of to establish common ways of thinking and talking
disease etiology expands. For the forseeable future, about disability. This article complements and
tertiary and quaternary prevention will be the advances those reports.
active strategies, helping people to overcome and The Disablement Process is a thoroughly socio-
diminish disability. Research on effective and afford- medical model, paying attention to both medical
able interventions, ranging from technological to and social aspects of disability. We explicate the
psychological, should be high on the agenda of pathway from pathology to disability in ways suitable
gerontology. to medical sociologists, epidemiologists and clinical
researchers. We elaborate that basic scheme by incor-
CONCLUSION porating risk factors, interventions and exacerbators.
The concept of disability is given new sociological
Prevention of disability is a rising theme in public heft: We stretch its scope to all activity domains,
health policy, well-timed with societal changes that defend the metric of difficulty over dependency, intro-
will boost both disability prevalence rates and the duce the notions of intrinsic and actual disability, and
numbers of disabled persons for coming decades. discuss the virtue and verity of a person-environment
Disability prevalence rares are likely to rise in all perspective. The Disablement Process compasses
age groups for two reasons: First, contemporary both lifelong and late-life disability. but there is great
medicine excels in detection and management of need for more theoretical work about how onset and
life-threatening chronic diseases. This prolongs life duration affect the disablement experience.
for many persons (called marginal survivors), but
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