No abstract

The number of US adults ages sixty-five and older who are living with dementia is substantial and expected to grow, raising concerns about the demands that will be placed on family members and other unpaid caregivers. We used data from the 2011 National Health and Aging Trends Study and its companion study, the National Study of Caregiving, to investigate the role of dementia in caregiving. We found that among family and unpaid caregivers to older noninstitutionalized adults, one-third of caregivers, and 41 percent of the hours of help they provide, help people with dementia, who account for about 10 percent of older noninstitutionalized adults. Among older adults who receive help, the vast majority in both community and residential care settings other than nursing homes rely on family or unpaid caregivers (more than 90 percent and more than 80 percent, respectively), regardless of their dementia status. Caregiving is most intense, however, to older adults with dementia in community settings and from caregivers who are spouses or daughters or who live with the care recipient.

In the United States, the effect of longevity on expenditures for acute care differs from its effect on expenditures for long-term care. Acute care expenditures, principally for hospital care and physicians' services, increase at a reduced rate as the age at death increases, whereas expenditures for long-term care increase at an accelerated rate. Increases in longevity after the age of 65 years may result in greater spending for long-term care, but the increase in the number of elderly persons has a more important effect on total spending.

In September 2002, a technical working group met to resolve previously published inconsistencies across national surveys in trends in activity limitations among the older population. The 12-person panel prepared estimates from five national data sets and investigated methodological sources of the inconsistencies among the population aged 70 and older from the early 1980s to 2001. Although the evidence was mixed for the 1980s and it is difficult to pinpoint when in the 1990s the decline began, during the mid- and late 1990s, the panel found consistent declines on the order of 1%-2.5% per year for two commonly used measures in the disability literature: difficulty with daily activities and help with daily activities. Mixed evidence was found for a third measure: the use of help or equipment with daily activities. The panel also found agreement across surveys that the proportion of older persons who receive help with bathing has declined at the same time as the proportion who use only equipment (but not personal care) to bathe has increased. In comparing findings across surveys, the panel found that the period, definition of disability, treatment of the institutionalized population, and age standardizing of results were important to consider. The implications of the findings for policy, national survey efforts, and further research are discussed.

This article updates trends from five national U.S. surveys to determine whether the prevalence of activity limitations among the older population continued to decline in the first decade of the twenty-first century. Findings across studies suggest that personal care and domestic activity limitations may have continued to decline for those ages 85 and older from 2000 to 2008, but generally were flat since 2000 for those ages 65–84. Modest increases were observed for the 55- to 64-year-old group approaching late life, although prevalence remained low for this age group. Inclusion of the institutional population is important for assessing trends among those ages 85 and older in particular.

A s the Baby Boom generation nears retirement and old age, concerns about how the United States will meet the long-term-care needs of its growing elderly population are intensifying. The Social Security Administration projects that one in five Americans will be aged 65 or older by the year 2030, compared with about 13 percent now. Most of the increase will occur between 2010 and 2030 as the Baby Boom generation turns 65. Whereas the family has long been the primary source of long-term care for the elderly, the steep increase in the elderly population casts doubts on whether it can continue in this role as the number and proportion of older adults increases.In particular, there is concern that demographic trends affecting the number of potential family caregivers and the competing demands for their time threaten their willingness and ability to continue assume most of the responsibility for long-term care. Trends toward delayed childbearing and increased female labor-force participation, for example, suggest a growing "sandwich generation," especially of women, who are caught between the demands of child rearing and elder care while attempting to play a more demanding role in the work force. Reduced availability of family caregivers clearly could affect the economic and physical well-being of the elderly and their families. Public budgets will Recent evidence suggesting a downward trend in the age-adjusted prevalence of disability and functional limitation among the elderly has raised hopes that long-term-care burdens on families and public programs will be less than feared. However, even with a lower disability prevalence, growth in the size of the elderly population could result in a constant or larger absolute number of elderly persons needing assistance, depending on the relative rates of change. Any increase in the level of disability among the disabled also could imply greater burdens on affected families and public programs. Thus, there is a pressing need for information on how disability is changing and how families are responding to those changes.We rely on the 1984 and 1994 National Long Term Care Surveys (NLTCS) to update the estimates of potential and active family caregivers presented by Stone and Kemper (1989) and to examine changes over the decade in informal family caregiving. We use consistent methodology to measure the prevalence of chronic disability among the elderly in each year and the distribution of the disabled elderly by receipt of informal and formal care and by the presence of spouses or children who might provide care. Finally, we examine the characteristics of both potential family caregivers and those who actually provide care and discuss the implications of observed changes.

Policy Points:r Nearly half of elderly Medicare beneficiaries have difficulty performing daily activities without assistance or receive help with such activities. This help is most often from informal caregivers.r Substantial numbers of older adults living at home or in supportive settings other than nursing homes experience adverse consequences related to unmet need.r With continuing care shifts away from nursing homes, strategies are needed to improve community-based long-term care services and supports to aid both older adults and the informal caregivers who provide most care. Context:The cost of late-life dependency is projected to grow rapidly as the number of older adults in the United States increases in the coming decades. To provide a context for framing relevant policy discussions, we investigated activity limitations and assistance, care resources, and unmet need for a national sample of older adults. Methods:We analyzed the 2011 National Health and Aging Trends Study, a new national panel study of more than 8,000 Medicare enrollees. Findings:Nearly one-half of older adults, or 18 million people, had difficulty or received help in the last month with daily activities. Altogether, 1 in 4 older adults receiving help lived in either a supportive care (15%) or a nursing home (10%) setting. Nearly 3 million received assistance with 3 or more self-care or mobility activities in settings other than nursing homes, and a disproportionate share of persons at this level had low incomes. Nearly all older adults in settings other than nursing homes had at least 1 potential informal care network member (family or household member or close friend), and the average number of network members was 4. Levels of informal assistance, primarily from family

Recent research indicates declining age-adjusted chronic disability among older Americans, which might moderate health care costs in the coming decades. This study examines the trend's underlying components using data from the 1984-1999 National Long-Term Care Surveys to better understand the reasons for the declines and potential implications for acute and long-term care. The reductions occurred primarily for activities like financial management and shopping. Assistance with personal care activities associated with greater frailty fell less, and independence with assistive devices rose. Institutional residence was stable. More needs to be known about the extent to which these declines reflect environmental improvements allowing greater independence at any level of health, rather than improvements in health, before concluding that the declines will mean lower costs.