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Epidemiological, Demographic, and Social Correlates o f Disability among the Elderly

K E N N E T H G. M A N T O N

Duke University

IN A N A L Y Z I N G “ D I S A B I L I T Y " OR “ F U N C T I O N A L

impairment” among subgroups o f the population o f the United States, the elderly and oldest-old populations require special at

tention both because they represent the largest numbers o f disabled persons and, perhaps more critically, they are the population groups for which defining disability and functional impairment is most difficult. This is because, until relatively recently, both popular concepts and the scientific literature tended to regard functional loss as a necessary and nearly universal correlate o f the aging process.

More recent research on aging has challenged the inevitability of the linkage o f severe functional loss and impairment with age. A number of new studies have shown that the age rate of decline of physiological parameters and function with age found in prior studies was, in part, a product o f design flaws in many o f those studies (e.g., Lakatta 1985). Specifically, in many o f the older studies “ representative” samples o f elderly were selected. Since the prevalence of chronic disease, both manifest and latent, tends to increase with age, a large part of the functional loss with age found in older studies reflected the effects o f an increasing prevalence o f chronic disease on function, not the “ natural concomitants” o f aging itself.

Many newer studies are specifically designed to unconfound the effects o f chronic disease and aging by carefully screening for the presence o f both latent and manifest disease (e.g., Lakatta 1985).

The Milbank Quarterly, Vol. 67, Suppl. 2, Pt. 1, 1989 © 1989 Milbank Memorial Fund

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1 4 Kenneth G . Manton

These studies show that many physiological functions can be preserved to greater ages than previously thought. Other studies have shown that there is great individual variation in the trajectory of fimctional loss with age which depends upon the type of chronic disease affecting the individual. These studies o f the so-called “ terminal drop” show that the rate o f physical and cognitive functional decline before death at advanced ages is often quite rapid, producing in some groups of elderly individuals very short periods o f impairment (e.g., Manton, Siegler and Woodbury 1986). In addition, other studies have shown that many mechanisms emerge at latter ages that compensate for specific types of functional loss, and that there is a much greater potential for rehabilitation and regaining function at advanced ages than previously supposed (World Health Organization 1982). In sum, the current scientific evidence suggests that though there is certainly a strong correlation o f functional loss with age, function can (by appropriate early preventive actions) be preserved to more advanced ages and at higher levels than was previously believed, that individuals show considerable variability in the rate at which functional losses occur, and that rehabilitative interventions can help improve functional status at later ages for many individuals. The benefits o f eflForts to control the disability associated with aging will not be restricted to the elderly population. The most efficient interventions involve prevention o f disability, by intervening in the early stages of the chronic disease processes producing the greatest proportion of disability in middle, and even early adult, years. This will reduce the prevalence o f disability during the late adult working years and perhaps, by prolonging work ability, reduce some o f the pressure for early retirement. It should also be recognized that handicapped and disabled persons now often survive to more advanced ages (e.g., advances in the longevity o f spinal-cord-injured veterans due to better antibiotic therapies for urinary tract and other infections) and are at risk o f additional disability resulting from age-related processes. Thus, such handicapped, disabled younger persons may have special needs to reduce the risk and forestall the emergence of additional age-related disability.

This evidence suggests that the past acceptance of “ natural” age- related loss o f function and disability among the elderly has been counterproductive— a type o f self-fulfilling prophecy— and that a more

Correlates o f D isability 15

active approach should be adopted in attempting to preserve function at later ages. This approach must be reflected in changes both in the medical and institutional response to disability and chronic disease among the elderly and in the self-concepts accepted by many elderlythemselves.

The evidence also suggests the need for more active research into lifestyle and other risk factors o f functional loss (e.g., Manton 1989). Specifically, much o f the past epidemiological investigation o f chronic- disease risk factors has focused upon the identification and control o f risk factors for acute lethal conditions— especially those affecting middle-aged males. Because o f this research, medical science has been successfiol in identifying risk factors (e.g., blood pressure, serum cholesterol, smoking, obesity, exercise) for lethal conditions like coronary heart disease, stroke, and cancer. In addition to identifying the risk factors for these diseases, considerable progress has occurred in the development o f medical and pharmacological technologies to control those factors. For example, there are now five types o f antihypertensive agents (i.e., diuretics, beta blockers, ACE inhibitors, calcium channel blockers, serotonin antagonists) which can be used singly, or in combination, for different types o f hypertension. By targeting specific features o f the disease mechanisms, these different classes o f drugs can result in greater degrees o f risk factor control with less adverse side effects (Julius 1988; Williams 1988).

More recently, the potential efficacy o f treatment, control, and prevention o f these acute disease processes and their risk factors at advanced ages has been demonstrated. For example, while early analyses o f the effects o f controlling the standard heart-disease risk factors suggested little benefit at advanced ages (e.g., Kannel and Gordon 1980), recent studies which controlled for the general rise o f mortality with age show that many o f these factors continue to be as important (or more so) at advanced ages. Studies o f a large group o f persons with relatively healthy lifestyles show significantly higher life expectancy at age 65 (Lew and Garfinkel 1984). Even after adjustingfor other risk factors like smoking, parental longevity, and blood pressure, the benefits o f physical activity have been demonstrated in significantly enhanced life expectancy up to at least age 80 (Paffen- barger et al. 1986). These recent epidemiological findings have caused the revision o f clinical principles about treating persons at more ad-

i6 Kenneth G . Manton

FIG. 1. Survival Curve for Person (Ii) Dying of a Rapidly Lethal Disease Source: Manton 1989, figure 2.

vanced ages and led to the development, for example, by the National Institute on Aging, o f multicenter randomized controlled intervention trials for isolated systolic hypertension.

Because o f their characteristic natural history, acute, lethal conditions, however, do not generate the largest amount of disability in the elderly population. This is illustrated (figure 1) in a modified life- table model (World Health Organization 1984) o f the age relation o f chronic disease to disability and mortality.

In figure 1 four lines are presented. The outermost line, labelled “Mortality,” represents the decline with age o f the probability of living to age x. The line labelled “Morbidity” represents the probability o f surviving to age x free o f the manifestation of a majorchronic disease. Note that the figure begins at age 30, suggesting that the development o f morbidity (and subsequently disability) involves a lengthy process that may begin much earlier in life. Interestingly, this suggests that age 65, the age frequently used to define the elderly population, is unlikely to have special significance for the onset and progression o f these diseases. In the figure, age 30, where risk starts to increase more rapidly, and age 80, by which time many deaths have occurred, represent age ranges that may be typically more significant in terms o f health and functional changes for those types

Correlates o f D isability 1 7

of diseases. The area under morbidity curve represents “ healthy” life expectancy. The intermediate line labelled “ Disability” represents the probability o f surviving to age x free o f serious disability. The area under this curve represents “active” life expectancy (e.g., Wilkins and Adams 1983; Katz et al. 1983). The line labelled “ significant risk factor damage” represents the age by which risk factor exposure relevant to these types o f acute lethal processes (e.g., smoking, circulatory degeneration due to improper nutrition, or hypertension) has begun to generate latent physiological changes that will eventually lead to the manifestation o f morbidity.

In one sense “ morbidity” can be viewed as beginning with the accumulation o f exposure to the types o f risk factors which can affect multiple acute, lethal (as well as possibly chronic degenerative) disease processes. For example, cigarette consumption increases both the risks of lung cancer and o f more slowly developing processes like osteoporosis. The inclusion o f the risk factor exposure curve is intended to emphasize the lengthy natural history of even rapidly lethal disease processes and the fact that “prevention” may need to begin at relatively early ages. It is also intended to suggest that there is a latent phase of accumulated physiological damage during which intervention may be successful in reversing some of the damage. Once “morbidity” for the acute, lethal diseases becomes manifest, additional pathological processes are initiated that may be more difficult to reverse than the latent processes (e.g., it is easier to reverse the left ventricular hypertrophy associated with hypertension than the damage to the myocardium associated with the ischemic circulatory events associated with a heart attack).

Figure 1 is modified from the original model (World Health Organization, 1984) to reflect better the typical impact o f acute lethal diseases on healthy and active life expectancy among the elderly. Thus, the areas between the morbidity, disability, and mortality curves have been compressed to represent the shorter survival time after an acute lethal condition is manifest. Furthermore, the model is drawn to reflect such conditions (e.g., heart attack, cancer) affecting mainly persons in late middle age and in the so-called “young-old” population (Manton, Siegler and Woodbury 1986). In contrast, in figure 2 a different set o f survival curves represent the morbidity, disability, and mortality patterns typically associated with the chronic degenerative conditions (e.g., osteoarthritis, chronic obstructive pulmonary disease.

i8 Kenneth G . Manton

FIG. 2. Survival Curve for Person (I2) Dying of Degenerative Disease Source: Manton 1989, figure 2.

rheumatoid arthritis, osteoporosis, diabetes, Alzheimer’s disease) which produce much o f the duration-weighted impact o f disability in the elderly population. Indeed, though we tend to associate these processes with the elderly because o f age increases in prevalence, a number o f these disease processes (e .g ., rheumatoid arthritis, diabetes, and chronic obstructive pulmonary disease) have significant impact in the late middle ages (e.g., 50 years o f age and older) and thus also may have a significant impact on the adult working population.

The natural history o f this type o f disease process is quite different in that impairments o f physical functioning become manifest long before the “catastrophic” failure o f the individual due to disease (or its sequelae). Consequently, the figure shows that persons affected with such slowly developing conditions tend to live longer and spend a greater proportion o f the life span in a disabled state. It should be noted that, while such diseases are manifest for much longer periods, they too eventually cause catastrophic organ system fiiilure (i.e., death). For example, poor nutrition, high alcohol consumption, and smoking may cause a woman to have very low bone density premenopausally. As a consequence, postmenopausally, she may rapidly manifest the initial signs o f osteoporosis. Typically, the progression of osteoporosis will be lengthy and continue until the skeleton becomes so unstable that there is high risk o f serious fracture (e.g., hip


fracture). Such catastrophic acute consequences of osteoporosis can lead to extended bedrest, debilitation, heightened risk o f infection, and other co-morbidities all o f which, in the context o f poor physiological homeostatic forces at advanced ages, can trigger rapid physiological decline leading to death.

One factor differentiating the acute lethal and chronic degenerative disease processes are the different organ systems and physiological functions they most affect. Many o f the chronic conditions producing much age-related disability affect the musculo-skeletal, immunological, and neurological systems. Many acute conditions affect the coronary or pulmonary systems or are produced by neoplastic processes. The situation for a given individual is often more complex than represented by either model with multiple, interacting chronic diseases often present. Furthermore, certain chronic degenerative diseases, like diabetes, may heighten the risk o f loss o f physical function and o facute lethal disease.

Though the prevention o f disability through early intervention in the underlying chronic disease processes is a preferable strategy in many regards, the potential for rehabilitation among the elderly should not be minimized. A number o f studies have shown that physical activity may improve physical functioning for even very elderly persons. Transition tables presented later in this article suggest considerable potential for regaining function over a two-year period. Other studies have shown that some persons manifesting severe cognitive impairment in institutions suffered deficits because o f social isolation and could be rehabilitated. The potential for rehabilitation will be linked to the type o f disease process or condition producing the disability, e.g ., much function may be regained after successful rehabilitation from a severe fracture. Even in those cases where the disease processes is not currently treatable (e.g., Alzheimer’s disease), however, appropriate management and social support may slow the loss o f function associated with the disease by maximizing environmental input and social support (Besdine 1988).

While we have been successful in identifying and controlling the risk factors associated with many acute, lethal conditions (figure 1), medical science to date has been less successful in identifying and managing the risk factors for chronic degenerative conditions which most affect active life expectancy. For example, in Canada (Wilkinsand Adams 1983) where, o f approximately six years o f life expectancy


1. Medical/Epidemiological ModelEtiology — Pathology Manifestation

2. Extension of Medical Model for Disease ConsequencesDisease —> Impairment —> Disability Handicap whereImpairments are “concerned with abnormalities of body structure and appearance and with organ or system function, resulting from any cause; in principle, impairments represent disturbances at the organ level.”Disabilities are “reflecting the consequences of impairments in terms of functional performance and activity by the individual; disabilities thus represent disturbances at the level of the person.”Handicaps are “concerned with the disadvantages experienced by the individual as a result of impairments and disabilities; handicaps thus reflect interaction with and adaptation to the individual’s surroundings.”

FIG. 3. A Comparison of the Logic of the Medical/Epidemiological Model of Disease and the Extension of the Model for Assessing Disease Consequences Source: World Health Organization 1980, 14.

gained at age 65 between 1950 and 1978, 80 percent (about 4.7 years) was in an impaired state. This situation may change because o f new research on the possible causes o f Alzheimer s disease, rheumatoid arthritis, and other chronic degenerative processes (e.g.. Man- ton 1989).

In addition to problems in defining biomedical dimensions of disability among the elderly, there are problems in defining their social and behavioral consequences. This has led to the World Health Organization (1980) classification system in figure 3.

In figure 3 a conceptual distinction is made between impairments, disabilities, and handicaps. Impairments refer to the loss of specific physical functions. Disabilities refer to the incapacity to perform basic self-care functions. Handicaps refer to the restrictions that impairments and disability place on the performance o f basic social roles and on interaction with one’s environment. Services and care might be directed at any level o f the impairment process, i.e., to compensate for impairments, disabilities, or handicaps. It is also clear that, for


the elderly, the same level o f impairment might produce different levels o f disability and handicap because o f different social expectations about the functional capacity o f the elderly (e.g., expectations about the ability o f the elderly to fulfill labor-force roles). In the following discussion we focus upon the medical determinants o f disability and not upon social and work-role adaptations that may be made exogenous to the individual. W e utilize the term disability to refer to loss o f self-care capacity and focus our analysis on the physical dimensions of the process though definitional problems reemerge in later sections where we discuss service needs o f the disabled elderly.

In the remainder o f this paper we will explore the quantitative implications o f these concepts for the United States elderly population— both now and in the future. To do this we will examine the current and future patterns o f disability projected for the United States elderly population, using data from several national surveys. W e then explore how those disability patterns are affected by altering the risks of diseases reported as causing chronic disability. Finally, we examine the implication o f those changes for the service requirements o f the disabled elderly population by reviewing estimates o f need for longterm care (LTC) services in the United States elderly population.

Projections of Disability in the Elderly Population

In this section projections are presented o f the growth of the disabled and institutionalized elderly population based on data from two recent national surveys. The characteristics o f the community-based chronically disabled elderly population are derived from the 1984 National Long Term Care Survey (NLTCS). This survey was designed to describe the characteristics o f community-dwelling, elderly (aged 65 and over) persons with “chronic” disability, i.e ., persons who reported an activity of daily living (ADL) or instrumental activity o f daily living (lADL) that had lasted, or was expected to last, at least 90 days. The 1984 sample was, in part, derived from the 1982 NLTCS where the sample was identified by screening a large sample o f Medicare-eligible persons (35,789) aged 65 and over for chronic disability. This identified 6,393 disabled persons in 1982. The 1984 sample included approximately 6,000 community dwelling and 1,700 institutionalized persons and represented both newly disabled persons identified from


further screening as well as survivors o f the disabled and institutionalized samples identified for the 1982 survey (Manton and Soldo 1985). An important feature o f the NLTCS sample is its age stratification with over-samples o f (about 2,000) persons aged 85 and over drawn from the Medicare-eligible population. This age group has both a high prevalence and levels o f disability and thus is critical for studying disability among the elderly. The NLTCS is one o f the few national surveys to over-sample this group to improve the precision of the estimates o f its characteristics.

The characteristics o f the institutionalized population are derived from the 1985 National Nursing Home Survey (NNHS). This survey collected detailed information on a large sample of discharges over a preceding 12-month period and a large sample of current residents. The current resident sample was used to calculate the rates employed in this study.

The rates estimated from the 1984 NLTCS and 1985 NNHS were used to project the future growth o f the community-based disabled and institutionalized elderly populations using a static component model. Rates o f disability, specific to sex, age, marital status, and disability level are derived from the 1985 NNHS. These rates are applied to projections o f the growth o f the United States elderly population (specific to age, sex, and marital status) produced by the U.S. Social Security Administration (1987) (SSA) actuaries for 1987 to project the future growth o f the disabled and institutionalized elderly populations. The SSA population projections are adjusted to represent the United States resident population. These projections update and extend projections reported earlier (Manton and Liu 1984) based on the 1982 NLTCS, the 1977 NNHS, and the SSA projections o f the Social Security entitlement population for 1982. They differ from those earlier projections by having higher lADL impairment rates, though the overall impaired population size is similar due to lower projected rates o f population growth in the new SSA series.

The basic quantities projected are the number o f elderly persons in specific age, sex, marital status, disability, and institutional states for the years 1985, 2000, 2020, and 2060. These dates reflect critical points in the growth o f the United States elderly population where large birth cohorts pass certain critical ages, i.e., 65 and 85. The post-World War II “ baby-boom’* cohorts, for example, will largely have passed age 65 by 2020 and age 85 by 2060.

Correlates of D isability 23

In the projections, disability intensity is coded into five levels: (1) no chronic disability; (2) at least one lADL disability but no disability in ADL; (3) 1 or 2 ADL disabilities; (4) 3 to 4 ADL disabilities; and (5) 5 to 6 ADL disabilities. Disability here is defined to be the inability to perform a specific function because o f health or age, whether that person (a) does not perform the activity at all, (b) can only perform it with the help o f another person, (c) can only perform it with the help of special equipment, or (d) can only perform it if a person is available to give aid (but may not actually deliver aid).

We selected five levels o f disability intensity because they have different implications for health and social service needs. Many proposals regarding federal reimbursement of LTC services have been based on the number o f ADL impairments. For example, the Pepper bill introduced in 1988 used 2 o f 5 ADL impairments as the criterion for receiving extended home health care benefits under Medicare. Persons with 5 to 6 ADLs are highly impaired and likely require nursing services in addition to aid care.

The projected populations at these five disability levels and for the institutionalized population are presented in table 1 using SSA projections (adjusted for United States residence) based upon the medium variant assumptions about the rate o f decline o f mortality rates.

In table 1 the total number o f community-based disabled elderly with any level o f chronic disability in 1985 was estimated to be 5.465 million, with 4.359 million aged 65 84 to 1.1 million aged 85 and over. The estimate of 5.465 million persons is based upon the survey criterion of a condition being chronic (i.e., lasting or expected to last 90 days or more at the time the Medicare-eligible population is screened for disability) and the sets o f ADL and lADL used to define disability. Other definitions o f disability could be used to give somewhat different estimates and, because the estimates are based on survey data, they are subject to sampling variability. Alternate definitions of disability in 1984 would not alter the projected rates o f growth of the disabled population (only the absolute level) and would probably not significantly affect the conclusions. In particular, persons with significant disability (e.g., with 3 or more ADL impairments) would almost certainly emerge as impaired under any reasonable classification.

In addition, the institutional population, which tends to have very high levels o f impairment, is projected. Indeed, recent changes in

24 Kenneth G . Manton

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Assuming constant age, sex and marital status specific disability rates, the size o f the elderly chronically disabled and institutionalized populations is projected to increase considerably due to the aging o f the United States population and greater life expectancy at advanced ages. The total number o f chronically disabled persons grows by 31 percent to 7.16 million persons by the year 2000. The growth o f the most severely disabled persons (i.e., those with 5 to 6 ADL impairments) to the year 2000 is even faster: 36.7 percent. The growth o f the institutionalized population was faster yet: 42.2 percent. These growth rates may be contrasted with the growth o f the nondisabled population o f only 19.7 percent.

The rapid increase o f the disabled and institutional population is projected to continue to the year 2060, when the W W II “ baby boom“ cohorts will have passed age 85. The institutionalized population is projected to grow 245 percent, the total disabled population 179 percent, the community-based population with 5 to 6 ADL impairments 208 percent, while the nondisabled elderly population is projected to grow only 126 percent. As a consequence, the ratio o f the nondisabled elderly population to the disabled elderly population (including those institutionalized) decreases from 3.2 to 1 in 1985 to 2.5 to 1 in 2060. Thus, there will be relatively fewer nondisabledelderly to provide informal care to an increasing disabled elderly population. For example, the likelihood that elderly spouses, siblings, or young-old children will be nondisabled and available to provide care-giver services to the disabled elderly will decrease. The relative numbers o f younger persons available to take care of the disabled elderly population will decline even faster, suggesting that the relative

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availability o f informal care resources is likely to decline significantly in the future.

These demographic dynamics not only cause the total number of disabled elderly and institutionalized persons to increase but also have significant effects on the demographic composition o f the disabled populations as different age and sex groups with very different levels o f disability are projected to grow at different rates. For example, as described above the most rapidly growing component o f the community-based disabled elderly population are those with 5 to 6 ADLlimitations, i.e., those with the most severe disability levels (an increase o f 208 percent). Those with only lADL impairments, in contrast, increase least rapidly (163 percent). The institutionalized population is projected to grow most rapidly (245 percent).

The reason for these differences is the rapid growth of the oldest- old population with their higher risks o f disability and institutionalization. While the community-dwelling disabled elderly population aged 65 to 84 grew 121 percent, those aged 85 and older are projectedto increase fivefold. For persons aged 85 and older with 5 to 6 ADLimpairments there is a 409 percent increase compared to a 129 percentincrease for persons aged 65 to 84 with this level o f disability. The growth o f the institutional population aged 65 to 84 was 127 percent, while for those aged 85 and over the growth is 386 percent. Thus, in addition to the rapid growth o f the disabled elderly population, the more highly disabled components o f that population are growing more rapidly, causing the disabled elderly population, on average, to become more disabled.

The projected rate o f growth o f the disabled population varies strongly by sex as well as age because o f large sex differences in the rate o f improvement in mortality among males and females. This is illustrated in table 2. W e see that the rate o f increase of disabled persons in the community is higher for males aged 85 and over than for females (470 percent vs. 380 percent). This is due to males* lower initial life expectancy levels in 1985 so that, as mortality declines upto age 85, it declines more rapidly for males. Despite the more rapid increases in the size o f the older male population in the community, the female groups remain absolutely larger at all ages and disability levels. Consequently, the problem o f disability among the elderly remains one disproportionately o f women.

These projections are subject to several sources o f uncertainty, in


eluding uncertainty about the rate o f future mortality improvement and uncertainty about the future pattern o f institutional versus home health care. In table 3 we illustrate how much these two sources o f uncertainty affect the projections. An additional source o f uncertainty, the possibility o f changes in the underlying health status o f the population (i.e., the change in the age-specific relation o f the curves in figures 1 and 2), is explored in the next section.

In table 3 we present, for the total elderly population and for different age groups, (a) the upper and lower bounds to the growth of the institutional and community-based disabled elderly population based on the high and low mortality assumptions made in the SSA projection series (i.e., where mortality rates are assumed to decline one-half as fast and twice as fast as the middle projection series used in tables 1 and 2), and (b) the change in the community-based disabled population resulting from a 50 percent reduction in the growth rate of institutionalization (i.e., a reduction from a growth rate o f the institutionalized population from the 2.1 percent per annum observed from 1977 to 1985 to 1.05 percent per annum).

The extreme mortality assumptions, though having large absolute effects, do not significantly alter the basic conclusions about the magnitude o f the growth o f the disabled and institutionalized elderly populations. By 2060 there is a 45.8 percent difference in the size of the projected disabled and institutionalized populations aged 85 and older based upon the high (12 million) and low (6.5 million)mortality assumptions— the group most sensitive to mortality assumptions. For the disabled and institutionalized populations aged 65 to 84 in 2060 the difference due to the extreme mortality assumptions is only 2.04 percent.

Even under the lowest assumed mortality rate decline, the total disabled community-based elderly population increases 153 percent by 2060— as compared to 230 percent under the fastest mortalitydeclines. This produces a 31 percent difference in the projected size of the total disabled population in 2060. For persons aged 85 and over the mortality assumptions have an even larger impact. The growth of the disabled population aged 85 and over is 628 percent under theoptimistic mortality assumptions and 284 percent under the pessimistic mortality assumptions. Even though the growth rates o f various age, sex, and disability level specific populations vary significantly, in all cases there is significant growth o f the disabled population.

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Furthermore, since most o f our discussion is based upon the intermediate (series II) mortality assumptions, the differences between the projection we evaluate, and those produced under rhe extreme assumptions, is one-half o f the range o f potential variability.

Though having a large effect on the size o f the institutional population (by 2060, a 36.5 percent decline from 4.52 million [Table 1] to 2.87 million persons), an assumed 50 percent reduction in thecurrent per annum rate o f increase o f the institutionalized population, with those persons being transferred to the community population according to the distribution o f disability reported in the 1985 NNHS, has a relatively small impact on the rate o f increase o f the total community-based disabled population. This is because o f the much smaller size o f the institutionalized population. Though the “ transferred” population is relatively small (a total o f 1.65 million personsversus the 19.7 million persons projected to be disabled or institutionalized by 2060 [table 1]) it is concentrated at advanced ages (e.g.,an 18.8 percent increase in the number o f disabled persons over the age of 85) and the highest disability levels (among those aged 85 and over with 5 to 6 ADL limitations, the projected increase is 36 percent).Thus, the promotion of a policy o f “deinstitutionalization” o f the elderly disabled population could lead to a sharply increased need for home health and other community-based services unless the deinstitutionalization policies are targeted to the least disabled persons in institutions.

Though the projections described above represent the increase o f the disabled elderly in terms o f demographic variables alone, even that limited set o f variables has important implications for the level and types o f care required by the disabled population (Manton and Soldo 1985). For example, persons with lADL dependencies only will tend to require primarily nonmedical services needs which may often be met by improved housing, the provision o f equipment, and other nonmedical care-giver services. In contrast, persons with 5 to 6 ADLimpairments are largely bed-bound and have high levels o f need for formal (trained) care-giver, nursing, and medical services. Likewise, differences in those rates for males and females are indications of major differences in the availability o f informal care services, with males typically having more care available from spouses whereas females are at higher risk o f not having adequate social resources to keep them out o f institutions (Manton and Soldo 1989).


The Effect of Changes in Health on the Future Increase of the Disabled Elderly Population

One aspect o f the growth o f the disabled elderly population that has not received adequate attention in health policy and health service research is the potential impact o f fundamental changes in health and functioning at later ages— and strategies by which such changes might be achieved. There has been considerable qualitative debate over whether increases in life expectancy at later ages have been achieved by improving health and function— or achieved simply by delaying the age at death (e.g ., Gruenberg 1977; Fries 1980; Feldman 1983). Certain evidence suggests that acute lethal processes (typified by the health processes represented in figure 1) may be modified somewhatindependently o f the chronic degenerative processes (see figure 2).Other evidence suggests that (a) the improvement o f life expectancy to date has been achieved primarily by intervention in the acute lethal processes— thus tending to increase the duration o f the life span spent in a disabled state (e.g., Wilkins and Adams 1983; Nihon University, 1982; Robine et al. 1989) and (b) that we do not currently know many o f the risk factors that must be modified to alter the risk of chronic degenerative processes.

This does not mean that controlling risk factors for acute lethal processes has no affect on the chronic degenerative processes. Reducingobesity at advanced ages and eliminating smoking may both reduce the risk o f the more slowly progressing degenerative processes of osteoarthritis and osteoporosis and reduce the risk of acute lethal diseases like lung cancer and heart disease. Controlling hypertension reduces the risk o f both lethal strokes and strokes that can produce significant long-term disability as well as dementia due to multiple cerebrovascular infarcts. Few population risk-fiictor intervention programs to date however, have been explicitly targeted at reducing disability. Consequently, most programs have more efficiently reduced mortality than disability rates. By targeting prevention programs specifically at the diseases generating the greatest amount o f disability, the relative rate o f improvement o f active to total life expectancy could be increased.

To explore the potential impact o f prevention programs targeted to reduce the rate o f growth o f the disabled elderly population we simulated two types o f interventions in population morbidity and


disability processes. In table 4 the disabled elderly population was projected under the assumption that disability rates could be reduced as rapidly as mortality rates. Such projections represent the assumption that an intervention program would affect the general health andfunctional status o f the elderly population and, instead o f reducing the incidence o f any single disease, delay the age at onset o f multiple disease processes. Such general improvements in health have been argued by Brody (1984) to have been responsible for recent increases in life expectancy at advanced ages. Cause-specific mortality changes provide some evidence for this in that the mean age at death from most major acute, lethal, and chronic diseases has increased significantly (Manton 1985). There is also evidence to suggest that early differences in lifestyle and health factors between birth cohorts may produce persistent differences in health and functioning when those cohorts reach advanced age (e.g., Manton and Myers 1987).

In this projection scenario, disability declines 13 percent in 2000, 20 percent in 2020, and 30 percent in 2060 from the middle variant(table 1). Furthermore, a comparison o f the two columns representing the percentage o f persons disabled show significant reductions, suggesting the dual benefit o f increasing the number o f nondisabled elderlyto help provide informal care. Thus, if we were to target the reduction of disability among the elderly as a major federal health policy— and if we were as successful as we are projected to be in reducing mortality— we could both significantly reduce the disability impact o f population aging and increase the pool o f functionally able elderly care givers, though the community-based disabled elderly population would still nearly double.

The above projections were based on two assumptions: first, that the progress in reducing mortality could be produced by actions to reduce disability independently o f changes in mortality; second, that with the requisite research and policy actions we could achieve the same degree o f progress in reducing disability at advanced ages that can be achieved in reducing mortality at advanced ages. In order to determine how realistic such assumptions might be we consider two further pieces o f evidence.

The first type o f evidence represents the two-year transition rates between disability levels among the elderly after those rates have beenadjusted for mortality. These are presented in table 5 separately for males and females for persons aged 65 to 74 and persons aged 85

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and over. The intermediate age group (75 to 84) has been omitted for parsimony and because the disability rates increase regularly with age.

At all levels o f disability there is a significant probability of regaining function. For example, at ages 65 to 74, men and women with 5 to 6 ADL impairments, and who survive two years, have similar changes o f long-term (two-year) functional improvement (42 percent). For survivors aged 85 and older the probability of improving functional level is less— though it is still significant (about 25 percent for females and 27.7 percent for males). Much o f the similarity in these transitions is produced by the adjustment for mortality level which varies considerably by age and sex (e.g., in the columns with the mortality rates used for adjustment the two-year mortality probability for females aged 65 to 74 who are not disabled is 3 8 percent versus 30.4 percent for females o f the same age with 5 to 6 ADL limitations). Without the mortality adjustment, persons with 5 to 6 ADL impairments have a 22.2 percent chance o f reducing the disability level over a two-year interval. With adjustment for survival (37.2 percent o f those with 5 to 6 ADL limitations die in two years), this increases to nearly 35.3 percent. These improvements occur even without a systematic national program for the prevention o f disability and rehabilitation among the elderly— and with social norms that currently accept increasing disability with age.

While the incidence o f disability, unadjusted for mortality, is similar for males and females (Manton 1988), females at all disability levels (and for all ages) have higher survival rates than males (e.g., two-year mortality for males aged 85 and older with 1 to 2 ADL limitations is 32.1 percent, 21.2 percent for females [table 5}). Thus, though disability occurs at similar rates, females tend to live longer with disability. This is probably because females haver higher risks o f a number o f chronic degenerative conditions like osteoporosis, diabetes, and rheumatoid arthritis. Therefore, targeting these chronic degenerative diseases for prevention is likely to have a greater effect on females— the group with the highest levels o f disability and fewer social and economic resources to cope with that disability.

To describe the potential quantitative effects o f such programs we conducted an alternate set o f projections. W e examined the conditions that the elderly reported as most important in causing their disability in the 1984 NLTCS specific to age, sex, marital status, and disability


level. Then, both for 1985 and for future years, we estimated the total effect, separately for males and females, o f selected conditions on disability. To illustrate the different impact o f acute and chronic conditions, projections were generated for four conditions— two acute lethal conditions (cancer, ischemic heart disease) and two chronic degenerative conditions (dementia, and arthritis and other skeletal problems). The results are presented in table 6.

Far more disability is attributed to arthritis and skeletal problems and dementia, with the effects increasing with time as the population ages. The total number o f cases o f disability attributed to cancer and ischemic heart disease by 2060 is almost 600,000— compared to a total community-based disabled elderly population o f a little over 15 million. In contrast, the total number o f persons with disability attributed to dementia is 1.6 million. About 5.2 million persons report arthritis and skeletal problems as causing disability. Together, the two conditions are reported as helping cause approximately one- half of the total disability— with a proportionately greater effect on females. While the effect o f cancer and heart disease is relatively greater for males than females, the absolute size o f the effect is still smaller than for the chronic conditions.

This suggests that, if effective strategies could be found to eliminate or significantly modify the degenerative processes o f arthritis and dementia, a significant proportion o f the projected increase in the disabled elderly population could be prevented. The improvement would not necessarily be as large as projected in table 6 because a person may have multiple disabling conditions (though presumably we are eliminating the most important cause). Furthermore, because persons typically survive with these diseases for lengthy periods of time, the reduction o f the risks o f these diseases would have a significant effect on the amount o f time the individual could expect to spend free o f disability. This is significant for the design o f health service systems and national health policy because the length o f time that a person has a disability could have a significant impact on his exhaustion of economic resources (e.g., a lengthy institutionalization could produce the “Medicaid spend-down“ phenomenon— for either the disabled person or a noninstitutionalized spouse) and on the capacity o f informal care givers to maintain the person in the community.

The strategies and technologies developed to eliminate or control

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these diseases might be based upon a genetically different logic than are disease prevention programs at younger ages, e.g ., instead of eliminating the disease one might consider how to delay the age at onset o f significant impairment. Thus, for chronic degenerative diseases secondary and tertiary prevention strategies along with rehabilitation are likely to play greater roles. Interestingly, the prevalence of impairment from a number o f these degenerative diseases, because their risk increases rapidly with age, could be significantly reduced by even relatively modest increases in their age at manifestation. Brody(1984) has postulated that a five-year delay in the age at onset o f dementia could reduce its prevalence by 50 percent— assuming that there was no concomitant increase in life expectancy. In such scenarios the way in which disease incidence relates to mortality changes is important. Some alternatives are considered in figure 4.

In figure 4 there are two panels. The first describes the change in the risk o f a chronic, degenerative disease with age (for the discussion we are assuming that from the onset o f the disease the time to death is unchanged). The second describes the age distribution o f cases that would be generated by each of the age-specific risk functions in the first panel. In panel 2, in addition, there is an “age at death'* distribution. A shift o f the distribution o f cases to the right (i.e., to more advanced ages) would result in a greater number o f cases not being manifest due to a lower age at death than age at disease onset for more persons (assuming that changes in morbidity are not strongly associated with the total force o f mortality). Thus, in panel 1 the two curves labelled “delay” represent the effect o f a five-year shift in the risk function described by Brody. This corresponds to the two, identically shaped distributions o f cases in panel 2 showing that theshift o f the distribution to later ages would result in a similar, but later, distribution of the age at onset o f the condition— except that more persons would die before manifesting the disease because the average mortality risks are higher for the second curve.

In the second scenario, labelled “ disease modification” the physiological mechanism of the disease is modified in a way that its dependence on age is altered so that the shape o f the age-specific disease hazard function is altered, i.e., it is made flatter. This produces a much different distribution o f age at onset o f the disease in panel 2 with even more cases being prevented from being manifest.

O f course, to be effective both types o f interventions assume that


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B

FIG. 4. (A). Change in the Age-specific Hazards of Disease (B). Distribution of Morbid Events Associated with Specific Hazard Functions

the correlation between the age at onset o f the condition and the distribution o f the ages at death is small. If the correlation is positive and a large delay in the average age at onset o f the disease is associated with an upward shift in the distribution o f the age at death there may be little gain in active life expectancy.

To design interventions to achieve increases in active life expectancy we must (a) understand the disease mechanism, its progression, and natural history, (b) identify risk fectors aflfecting different stages of disease, and (c) develop intervention strategies and technologies to control effectively those risk factor inputs.


Significant scientific evidence on several o f the most disabling chronic degenerative diseases now suggests that significant interventions may be developed in the near future. For example, in the case of osteoporosis discussed earlier, prevention programs would involve different pre- and postmenopausal strategies. Premenopausally one wishes to promote behaviors that maximize bone density at menopause. Risk factors decreasing bone density are smoking, alcohol consumption, extreme exercise (and consequential low body weight leading to low estrogen production), while moderate exercise, good nutrition, and adequate calcium intake are protective. Postmeno- pausally, calcium supplementation, exercise, adequate vitamin D supplementation, and possibly exogenous estrogen can retard the loss o f bone density. Exactly how those interventions would alter the distribution o f the age at onset is currently unclear. For example, by maximizing bone density at menopause one might shift the incidence curve to the right while by taking exogenous estrogen the disease process might be altered so that the shape o f the incidence curve might be modified. Many o f the details o f the natural history o f these disease processes are currently unknown and are necessary to understand the precise effects o f a given intervention on the distribution of disability in the elderly population. Additionally, it is unclear to what extent such interventions in osteoporosis would affect life expectancy— especially at extreme ages where hip fracture and other major skeletal failures caused by advanced osteoporosis are responsible for a significant number o f deaths (Manton 1986a). Resolution o f this problem requires ancillary data and biological insight into the disease processes to model the biological dependency of both multiple disease risks and multiple causes o f death.

Such detailed knowledge o f the basic disease mechanisms is beginning to emerge from some chronic diseases. For example, our knowledge o f the genetic, viral, and immunological basis o f rheumatoid arthritis is improving. Consequently, for the first time, rheumatologists are discussing medical therapies that are truly disease modifying (e .g., long-term, low-dose methotrexate, gold salts, cyclosporine). Considerable research is being initiated on the determinants o f Alzheimer's disease and possible medical interventions being identified for clinical evaluation (e.g., nerve growth factors). Research on Alzheimer's disease is at a very early stage. The absolute numbers o f cases (and their duration weighted impact) that could be affected


by effective therapy for such diseases, however, is so large that even if only a small proportion o f the total effect is realized, such efforts may be cost effective.

Service Patterns among the Disabled Elderly

In prior sections the future magnitude o f the problem o f disability among the elderly was illustrated as well as how much o f that problem might be resolved by further research on disease mechanisms, the development o f disease-modifyiung therapies and effective prevention and rehabilitation strategies. Our conclusion, based upon an assessment o f the recent rate o f scientific progress, was that a significant proportion o f the degenerative processes responsible for much o f the disability at later ages might be subject to significant control or modification within 10 to 20 years by appropriately targeted biomedical and public health efforts. This is well within the time horizon of our projections. Even under the most optimistic scenarios, however, a significant increase in the size o f the disabled elderly population is likely to occur. This seems particularly likely for the very elderly who have a high prevalence o f multiple chronic conditions so that elimination o f one condition still leaves individuals with other conditions to cause impairment and/or disability— though possibly at lower levels.

In this section, we estimate not simply the number of disabled elderly but the need (met and unmet) o f certain types o f services.The determination o f need for services is complex because, in addition to ascertaining intrinsic levels o f disability, one must evaluate the efficacy o f different strategies for responding to those disabilities. For example, needs could remain unfulfilled if one did not have either appropriate equipment or personal care to respond to specific types o f functional impairment. In some cases equipment may be substituted for personal care. The perceived adequacy o f the available level o f services is itself a function o f (a) the efficacy o f current techniques in resolving the impairment, and (b) current social values and governmental policy regarding the commitment to meet different needs (e.g., we might be more likely to provide home health services publicly than to provide alternate housing services). Furthermore, there is a broad range o f daily actions that are affected by functional disability


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SO that one current need might induce others. Thus, adequate medical care might be unavailable because o f impairments in outside mobility. Impairments in outside mobility could result because o f housing deficiencies (e.g., multistory housing without elevators) or characteristics o f residential location (e.g., crowded metropolitan areas).

The first dimension o f need examined is that for personal care and equipment to deal with each o f 6 ADL disabilities. This is detailedin table 7.

For each of the first 4 ADL disabilities, the proportion o f community-resident elderly persons with at least 1 ADL disability, whoreport lack o f either equipment or personal care, is less than 2.5 percent. Both bathing or toileting limitations are more prevalent (9.1 percent and 27.9 percent). The 976,000 persons with chronic ADL impairments who report unmet needs with toileting represent the difficulty in defining need. Much o f the need arises because persons report “wetting” or “ soiling” themselves on a regular basis. Current technology to respond to these problems (e.g., using diapers) may not prevent this. Hence, even if the best current technology were employed, the need may remain. O f course, it could be argued that innovative surgical or other interventions could eliminate the problem so that the resolution o f the problem may require research rather than increases in existing services.

Though 35 percent o f the community chronically disabled elderly report needing help for ADL functions, most needs results from 2 ADL impairments at low levels in the Katz hierarchy (Katz and Akpom 1976). This is not surprising since persons who cannot satisfactorily perform a function like eating are probably quickly institutionalized. The level o f unmet need is also strongly correlated with disability level. The prevalence o f unmet need doubles (25.2 to 52.7 percent) from 1 to 2 to 5 to 6 ADL impairments. It also varies strongly byage (not reported here) with the oldest-old having the highest level o f unmet need.

A second dimension o f need is for equipment. Some persons report having no need for specific equipment (e.g., handrails) and, among those reporting a need, some may have the equipment. Table 8 presents the numbers o f persons who have special equipment versus those who do not but who report that having the equipment wouldmake them more comfortable or aid them.

W e see that there are about 96,000 persons reporting needing doors

50 Kenneth G . TSUanton

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TABLE 9Projected Number o f Physicians, Nurses, and Home Health Workers

Required to maintain Current Levels o f Service for the Elderly Population

1. Physicians

2. Nurses

3. Home health workers(a) Aides(b) Nurses

1985 2000 2020 2040

110,000 137,830 206,030 267,760

390,000 488,740 730,650 949,333

198,90022,100

249,25827,695

372,64041,404

484,05953,797

Source: Manton 1986b, table 11.

with pushbars in contrast to 77,000 who report having them. About 1.3 million persons report living in a built environment with handrailswhile a little more than 903,000 persons say handrails would be useful but they do not have them. Among persons with 5 to 6 ADL limitations, about 250,000 persons report having handrails and about 183,000 do not. About 380,000 persons report having raised toilets and 405,000 report needing but not having them. Thus, there is a considerable reported need for special equipment in the built environment to help compensate for a number o f impairments.

An additional dimension o f need involves acute and LTC health services. This need, current and future, can be presented by (a) the demand for medical and auxiliary health professional manpower, and (b) the demand for informal care. In table 9 we examine projections o f the numbers o f three classes o f health care workers required to meet future demand for institutional and home health services (Manton1986b).

The number o f physicians required to continue current levels o f services for the elderly population increases nearly 150 percent— far more than the increase o f the total United States population. There are similar increases in projected demand for nurses and home health workers. Thus, there will have to be a more rapid increase in the requirements for medical manpower than expected on the basis o f population growth. Furthermore, because much o f this growth occurs in meeting the needs o f an elderly, disabled population there is need for specialized geriatric training o f these health professionals.


In table 10 we present the number o f care givers required, and number o f days spent by care givers to maintain current levels o f informal care.

The number o f care givers increases much more rapidly than the general growth o f the United States population. This means that to maintain current levels the intensity o f care giving will have to increase on a per capita basis and probably implies that, in the future, more of this care will have to be provided by paid care givers.

Summary

The magnitude and quality o f the problem of disability for the United States elderly population was analyzed in a series o f projections. An analysis o f the impact o f disability on this population is more difficult than for other disabled groups because previously, in both the popular and scientific literature, there was the assumption that the prevalence and severity o f disability was a natural consequence o f the aging process. Such a perspective has implications not only for initiatives to improve the health and functional states o f the elderly population but also for the perception o f the level o f disability, the handicaps associated with it, and the types o f services that are appropriately provided.

This image o f the natural emergence o f frailty with age is now challenged by a number o f studies. The extreme heterogeneity o f functional status in even the oldest-old (those aged 85 and over) population is evidence that functional impairment among the elderly is not a natural consequence o f aging and must be evaluated on an individual basis.

There is also increasing evidence that the physiological processes generating impairment are subject to intervention and, in some cases, may even be partly reversed and function regained. Recent research has begun to identify the risk factors for such processes and to explicate the mechanisms o f these processes so that more effective interventions can be developed.

Whatever interventions may be introduced, the demographic aging o f the population will cause large increases in the number o f disabled elderly. This is a national problem whose magnitude will depend upon the degree to which the broadly defined needs o f this population

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are or are not met. W e considered needs on a number o f levels. In terms o f basic self-care only bathing and toileting are reported as currently “ unmet"' to a considerable degree. The most serious deficiencies on a relative basis were for physical equipment and changes in the built environment.

All o f these factors contribute to a general assessment of changes in the size, structure, and needs o f the disabled elderly population. It is clear that no single response will suffice given the magnitude of the problems. Thus, a multidimensional approach involving the private sector and state and federal programs, and their coordination, will be needed to develop adequate responses to the problem. Given the dimensions o f the problem, however, it is likely that no response will be satisfactory unless fundamental changes in the sociocultural perception o f the functioning o f elderly people, and the provision o f family and other social resources to maintaining that functioning, are developed.

One aspect o f the problem that is o f particular concern has been the relative paucity o f nationally representative data to monitor the growth o f the problem, to characterize the dimensions o f the problem, and to monitor the efficacy o f different interventions. Only recently has nationally representative logitudinal data appropriate for this task become available. The existing temporal series o f such national data in the United States, however, are not yet lengthy enough either to identify major cohort differences or accurately assess whether active or healthy life expectancy has increased or decreased as life expectancy at later ages increases. This is a serious hindrance to the development of effective policies to meet the problems o f a rapidly aging population.

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56 Kenneth G . tAanton

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!lkXi

is

Cfeniii

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Paffenbarger, R .S., R .T . Hyde, A.L. W ing, and C.C. Hsieh. 1986. Physical Activity, All-cause Mortality, and Longevity o f College Alumni. New England Journal o f Medicine 314:605—13.

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Acknowledgments: This paper was prepared for the Milbank Memorial Fund Roundtable on Disability Policy, Harriman, N .Y., September 23—24, 1988. Research reported herein was supported by ASPE grant no. 87ASPE 185A, HCFA cooperative agreement nos. 18-C-98641 and 17-C-99009, and NIA grant nos. AG07198 and AG07469. Figures 1 and 2 are reprinted from Annals 503 by permission of Sage Publications, Inc.Address correspondence to: Kenneth G. Manton, Ph.D., Research Professor, Demographic Studies, Center for Demographic Studies, Duke University, 2117 Campus Drive, Durham, NC 27706.

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