The Characteristics of Long-term Care Users (continued)


Characteristics of Long-term Care Users by Service Type

Informal care was the mainstay source of care for most elderly long-term care users in 1994, although a substantial proportion of those who received informal care also received formal care (Table 7). Women and whites were less likely than men and blacks to use only informal care and more likely to be in institutions. For women, two-thirds of whom were widowed (not shown), this likely reflects the important role of spouses as informal caregivers. This is supported by the results for marital status. Those who were married were far more likely to receive only informal care and far less likely to be in nursing homes than the unmarried groups.

Education also appears to be related to type of care used, with higher levels of schooling apparently associated with formal and institutional care. However, caution is warranted, since about 12 percent of the sample is missing education, and the missing cases are concentrated in the institutional population.

Not surprisingly, the likelihood of using only informal care fell and the likelihood of being in a nursing home rose with disability level. More than 60 percent of those receiving only IADL help received only informal care, and only 8 percent were in nursing homes. Conversely, less than a quarter of those receiving help with three to six ADLs received only informal care, and more than half were in nursing homes. The group with three to six ADLs also was less likely than the less disabled groups to receive only formal care, reflecting the difficulty of managing high levels of disability in the community without informal supports. Those with cognitive impairment also were far less likely to receive only informal care and far more likely to be in nursing homes. More than half of the cognitively impaired were in nursing homes, compared with 14.7 percent of the cognitively intact.

Functional limitations were almost universal among the elderly receiving community long-term care. Compared with long-term care users with no upper or lower body functional limitations, those with such limitations (measured only for community residents) had a lower likelihood of receiving only informal care, and a higher likelihood of receiving formal care. Those with problems seeing or communicating were also less likely to receive only informal care and were more likely to receive both formal and informal care. All three types of difficulties were associated with a lower likelihood of receiving only formal care.  

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Elderly Persons Living in Housing with Supportive Services

Roughly 3 percent of all persons aged 70 and older in 1993 were living in housing complexes for the elderly which offered supportive services (Table 8), but only a minority met our definition of long-term care users. A housing unit or community was classified as offering supportive services if group meals, bathing, dressing, eating, or nursing care services were available to the residents. Residents are more likely to be female (nearly 80 percent) than the elderly long-term care population as a whole (about 71 percent), more likely to be widowed, and less likely to be married.

However, although those characteristics were shown above to be associated with a greater likelihood of long-term care use, only slightly over one-third of residents received any long-term care. Only 5.8 percent received help with three to six ADLs, 16.3 percent with one to two ADLs, and 13.7 percent with IADLs. Those receiving supportive services who did use long-term care were about half as likely as the community long-term care population as a whole to receive help with three to six ADLS (16 percent versus about 30 percent) but about equally likely to be receiving only IADL assistance (38 percent).

Given the low prevalence of long-term care among residents, it is perhaps surprising that about 45 percent were cognitively impaired, a higher prevalence than for the community long-term care population. Nonetheless, because of the relatively small sample size of the supportive living population, these findings should be interpreted with caution.

The prevalence of functional limitations among those living in supportive housing was high, with about two-thirds reporting either upper or lower body limitations, yet it was lower than the elderly community long-term care population (95 percent). About one-third of persons in supportive housing units had difficulty seeing and roughly a quarter of them had difficulty hearing. Finally, 12 percent of persons residing in housing offering supportive services received informal care only and about one-fifth used formal care, either alone or in combination with informal care.  

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Informal Caregivers of the Elderly

Informal caregiving remains the most prevalent source of care for the elderly receiving long-term care in the community, with two in five elderly care recipients receiving all care informally and two in three receiving some informal care. In 1994, there were 5.9 million informal caregivers providing care for the 3.6 million elderly receiving informal care in the community (Table 9). Most (65.7 percent) were either the spouses or children of elderly long-term care recipients.

About 30 percent of persons caring for elderly long-term care users were themselves aged 65 or older, and another 15 percent were between ages 45 and 54. About one-quarter were spouses of care recipients, but the largest group of caregivers were daughters. Other relatives accounted for slightly over a quarter of all persons providing informal care and non-relatives for about 9 percent. By far, most caregivers were women and roughly three in five were married. Informal caregivers were more likely to be caring for those with IADLs only, although about one-third cared for elderly persons with three or more ADLs. Roughly half of all caregivers shared a household with a care recipient, although over one in four were children who did not live with a recipient parent.  

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Comparison of Elderly and Non-Elderly Users of Community-Based Long-term Care

Table 10 compares elderly and non-elderly adult users of long-term care, both in the community and in nursing homes. The first two columns compare the two age groups in terms of receipt of community-based care, while the second pair of columns compare older and younger nursing home residents. Overall, the proportions of elderly and non-elderly community long-term care users were approximately equal, while the vast majority of nursing home residents were elderly. Conversely, while only 4 percent of non-elderly long-term care users were in nursing homes, the proportion of elderly long-term care users residing in nursing homes was much higher (27 percent).

Compared with the elderly, younger users of long-term care in the community were more likely to be male, black, more highly educated, and, not surprisingly, employed. They were less likely to be widowed, but they were more likely to be married, divorced or separated, or never married. Younger users were more likely to be below the poverty threshold than elderly users (26.5 percent versus 14.7 percent).

In terms of health status, younger users of community-based care were more likely than their elderly counterparts to receive help with IADLs only and were less likely to receive help with three or more ADLs. In addition, younger users were less likely to have only lower body functional limitations and were more likely to have no measured functional limitations. Compared with the elderly, younger adults were also less likely to use mobility aids or wheelchairs or to report difficulty with vision or hearing. In contrast, however, younger users were more likely to have cognitive deficits, such as difficulty communicating and mental retardation. Thus, cognitive limitations may play a larger role in leading younger adults to receive community-based long-term care, compared with elderly users of community-based care.

For people receiving care in nursing homes, the general pattern of results was similar to that for community-based care users: younger users were more likely to be male, black, divorced or separated, or never married; they were less likely to be widowed. Educational differences between older and younger nursing home residents were, however, not significant. In terms of health status, younger residents were generally less disabled. They were more likely to have IADL deficits only, and they were less likely to have three or more ADL deficits, to use mobility aids, and to have sensory impairments. Age differences in nursing home residents' difficulty communicating or understanding or use of wheelchairs were not significant, in contrast to the significant age differences among users of community-based care. 

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This analysis used information from a number of nationally representative data sets to provide an overview of the characteristics of adult long-term care users and to examine changes over time in the profile of elderly long-term care users.

For the elderly, we documented a number of important changes over the past decade. In 1994, nearly 17 percent of all persons aged 65 or older received help with ADL or IADL disabilities, a 3 percent drop relative to 1984. These observations are consistent with results from several recent studies (Manton, Corder, and Stallard, 1993; Manton, Corder, and Stallard, 1997; Crimmins, Saito, and Reynolds, 1997) that report declines in the overall rate of ADL/IADL disability among older Americans.

Despite the decline in the percentage of the elderly persons receiving long-term care, the level of disability among those who received help increased. The proportion of elderly persons receiving help with three to six ADLs increased while the percent receiving help with only IADLs dropped over the decade. The level of ADL disability increased among both community and institutionalized elderly persons, although the change was most marked among nursing home residents. Further, the prevalence of cognitive impairment also rose in both the community and institutional long-term care populations.

In contrast, the prevalence of functional limitations (upper and lower body difficulties) and difficulties seeing, hearing, and communicating remained virtually unchanged among elderly who received help with ADL or IADL disability. For the entire population aged 50 or older, Freedman and Martin (1998), using the Survey on Income and Program Participation, report large declines in the crude prevalence of limitations with seeing, lifting, climbing, and walking during the 9-year period between 1984 and 1993. Coupled with the findings in this paper for the elderly, this suggests that the declines reported by Freedman and Martin are concentrated among nonusers of long-term care. Finally, consistent with the increase in the level of disability among elderly long-term care users, there was an increase in the use of both formal care in the community and institutional care.

This study presents several findings that confirm long-standing wisdom about the long-term care population:

  • Most long-term care users are women.
  • The vast majority of community care users receive informal care only.
  • Elderly nursing home residents are the most disabled.

The study also highlights the heterogeneity of the long-term care population. For example, although most adult long-term care users in the community receive informal care only, among elderly long-term care users, 60 percent receive either formal care in the community or institutional care. While approximately one-quarter of elderly nursing home residents are male, among non-elderly nursing home residents, this proportion rises to about 50 percent. Overall, blacks are more likely to receive long-term care than whites. Among elderly users, blacks are more likely to receive community care, but less likely to be institutionalized. Compared with elderly long-term care users in the community, long-term care users aged 18 to 64 in the community are more likely to receive assistance with IADLs only, more likely to have mental impairments, and less likely to receive any formal care. Although the vast majority of elderly community long-term care users have some upper or lower body limitations, about a quarter of the non-elderly adult community users have neither upper nor lower body limitations. This suggests that a larger proportion of this population is receiving care solely because of their cognitive rather than their physical impairments.

Comparisons of institutional and community long-term care users show, not surprisingly, the greater level of ADL/IADL disability among the institutionalized. However, they also reveal a large minority of persons receiving help with three to six ADLs—a common cut point for nursing home eligibility—who remain in the community. Conversely, for the elderly, they reveal a non-trivial proportion who are institutionalized long-term care users, but who have no ADL disabilities. These findings, on one hand, remind us that care can be intensified in any setting to meet changing needs, but on the other hand, they raise questions about the appropriateness of care settings in these cases.

Two findings highlight the ability of some long-term care users to adapt to their functional limitations:

  1. Almost 20 percent of non-elderly adults who are receiving community-based long-term care are, nevertheless, still employed. An additional tabulation indicated that 30 percent of this group received help with one or more ADLs.
  2. Further, 7 percent of non-elderly, non-long-term care users report upper and lower body limitations.

Given these results, further research should examine factors that enable persons to maintain their social roles despite disability or major functional limitations. 

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Availability of Data

Data that approach national representation of the long-term care population are a relatively recent phenomenon, but comprehensive data for non-elderly long-term care users still are not available. Since 1984, the NLTCS, which is drawn from enrollment files for elderly Medicare beneficiaries, has collected detailed data for both community and institutional residents, providing a comprehensive view of elderly long-term care users. While use of Medicare enrollment files excludes a small percentage of the elderly who are not Medicare-eligible, this population-based approach omits no settings in which the elderly receive long-term care services. No such population-based survey exists for the non-elderly, and no combination of existing surveys can be said with confidence to provide a similarly comprehensive view of the non-elderly.

For the non-elderly long-term care users, the main shortcoming is the lack of data encompassing all institutional settings. The NHIS-D is a household survey and does not include a sampling frame for group homes. Consequently, it underrepresents the long-term care population. The 1987 National Medical Expenditure Survey, Institutional Population Component, included nursing homes, intermediate care facilities for the mentally retarded, and licensed personal care homes, and residents of all ages. The successor survey used in this study, the 1996 MEPS NHC, is restricted, however, to represent only nursing home residents. Neither survey includes other institutional settings, such as government mental institutions, government general hospitals, private hospitals, and Veterans Administration (V.A.) medical centers. Thus, with the most recent data, the underrepresentation of the institutional population is even wider because of the more restricted scope, a greater concern as these populations continue to grow (Polister, 1998). 

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Estimate of Long-term Care Users

Results from several studies can be combined to provide at least a rough estimate of the size of the non-elderly institutional population missing from our estimates. Persons in this group mainly include mentally retarded and mentally ill residents in government mental institutions, residential facilities, government general hospitals, private hospitals, and V.A. medical centers. In 1995, there were approximately 56,000 persons aged 18 to 64 living in State and county mental hospitals (Center for Mental Health Services, 1997). There were approximately another 60,000 in other institutional settings (Center for Mental Health Services, 1997; Redick, et al. 1996). In 1997, there were approximately 300,000 persons aged 18 to 64 with mental retardation or a related condition living in residential facilities (Anderson, et al, 1998; and personal communication with Charles Lakin).

Ignoring differences in the year of data collection, these estimates total about 416,000 persons, or approximately .4 million persons. This raises the total for non-elderly adult institutional long-term care users to about .5 million. As such, for non-elderly adults, the nursing home population described in this paper represents only about one-fifth of the total institutional population. Nevertheless, these revised numbers do not alter the conclusion that non-elderly adult long-term care users receive a higher proportion of their care in the community compared with elderly users. Finally, adding the .4 million to our other estimates of long-term care users from the NLTCS (5.5 million aged 65 and over), the NHIS-D (3.4 million aged 18 to 64), and the MEPS NHC (.1 million aged 18 to 64), would result in a total estimate of about 9.4 million long-term care users.

Two additional issues relating to disability measurement affect our estimates of long-term care users:

  • First, the estimate of long-term care users depends on the number and nature of the ADL and IADL measures included. As noted, we did not use heavy housework as a long-term care criterion, so that persons receiving assistance only with heavy housework were not included in the analyses of long-term care users. The NLTCS cannot be used to assess the marginal impact of excluding heavy housework because heavy housework is not included in the screening question used to define the disabled population. The NHIS-D, however, asks questions about heavy housework of all respondents. In that survey, an additional 3,247,473 persons aged 18 to 64 received help only with heavy housework. Their inclusion would have nearly doubled our estimate of non-elderly adult long-term care users. Similarly, an additional 2,756,230 elderly persons received only help with heavy housework. Their inclusion would have increased the estimate of elderly long-term care users by about 75 percent. Taken together, including persons who received help only with heavy housework would have increased our estimate of long-term care users by more than 6 million persons.
  • A second measurement issue for our estimates is whether the long-term care population should be restricted to persons who have chronic needs, thereby excluding those who experience only a short episode. If only chronic care is included, then persons who are expected to receive short-term ADL and IADL care due to a mild stroke, flu, or accident, for example, would be excluded as would most subacute care in the nursing home.

The classification of persons based on expected duration of long-term is difficult at best, and the length of time chosen to define chronic is somewhat arbitrary. For long-term care, an expectation of a 3-month duration is often used to distinguish long-term care from acute episodes of care. However, it was not possible to make these distinctions uniformly given the limitations of the national surveys used in this study. The NLTCS limits the long-term care population to persons with a need that has lasted or is expected to last 3 months or more. The NHIS-D, however, asks about current receipt of ADL and IADL care, but only asks if the expected duration is 1 year or more. The NHIS-D data provide no information about 3-month expected duration. Consequently, we could not include a 3-month duration limitation for the non-elderly adults. In addition, no expected duration information is collected for current residents in institutions in the NLTCS or MEPS NHC. As a result, the estimates of the long-term care population presented here are somewhat higher than an estimate restricted to chronic users. 

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The great diversity of elderly and non-elderly long-term care users and the increasing level of disability of the elderly long-term care population documented in this paper suggest that it will remain difficult and expensive to assure access to long-term care and meet the needs of this population. In the last decade, Medicaid and Medicare expenditures for long-term care have expanded greatly (Health Care Financing Administration, 1996). Both nursing home and home care expenditures in these programs are projected to double from 1995 to 2005 (Burner and Waldo, 1995). Efforts to reduce public costs (e.g., State efforts to control nursing home beds, the repeal of the Boren Amendment, the movement to prospective payment and managed care systems for the elderly and non-elderly disabled) need to be monitored carefully to assure that the needs of this population are met.

The ability to monitor access and need for services implies the availability of data to quantify the health and functional characteristics of users of long-term care, as well as the services that are being provided, in all settings in which long-term care is delivered. Data deficiencies are greatest for non-elderly users, for whom no population-based sampling frame exists. The consequence is an inability to know the characteristics of non-elderly adults in institutional settings other than nursing homes. For the elderly, however, there is need for improved data to compare alternative settings and evaluate the services that are provided. This is important not only for understanding the adequacy of the supply of long-term care services, but also for assessing the appropriateness and quality of the growing array of alternative settings.  

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Page last reviewed January 2001
Internet Citation: The Characteristics of Long-term Care Users (continued). January 2001. Agency for Healthcare Research and Quality, Rockville, MD.