Brenda C. Spillman

Resolving inconsistencies in trends in old-age disability: Report from a technical working group

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.

Trends in Late-Life Activity Limitations in the United States: An Update From Five National Surveys

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.

IN SICKNESS AND IN HEALTH: AN ANNUITY APPROACH TO FINANCING LONG-TERM CARE AND RETIREMENT INCOME

This article examines the implications of the positive correlation of mortality and disability for the benefits of combining an immediate income annuity with long-term care disability coverage at retirement ages. It also investigates the value of such a combined benefit to various subgroups of prospective purchasers and the implications of possible errors and moral hazard in the reporting of disability status and making claims. (The Journal of Risk and Insurance, 2001, Vol. 68, No. 2, 225-254)

The amount, distribution, and timing of lifetime nursing home use.

OBJECTIVES Information on lifetime nursing home use is needed to design and evaluate long-term care financing reforms. Whereas a number of studies have estimated mean lifetime use or its distribution, very little is known about variation in use among subgroups of the population, the timing of use, the number of distinct episodes of care experienced by nursing home users, and the risk and expected use at ages other than age 65. The purpose of the study was to fill these gaps in knowledge. METHODS The study used a data base constructed to represent decedents who used nursing homes. The sample was derived from the sample of discharges collected as part of the 1985 National Nursing Home Survey. Weights were constructed for the purpose of making projections of remaining lifetime nursing home use at selected ages in 1995. RESULTS There was considerable variation in lifetime use among demographic groups. Overall, estimates of the amount of use remaining at selected ages tended to be relatively constant at approximately 1 year. Mean years until nursing home admission, however, decreased sharply from almost 40 years at age 45 to approximately 5 years at age 85. CONCLUSIONS The distribution of lifetime use was highly skewed, providing support for efforts to spread risk through public or private insurance. With roughly one quarter of all use occurring after 5 years of nursing home residence, however, a substantial share of use would exceed benefit maximums that are part of many proposals for public financing of long-term care as well as private insurance policies.

Does high caregiver stress predict nursing home entry

This study estimates how informal care, paid formal care, and caregiver stress or burden relate to nursing home placement. Data came from the 1999 National Long Term Care Survey and were merged with administrative data. Results show that stress is a strong predictor of entry over follow-up periods of up to two years, and physical strain and financial hardship are important predictors of high levels of caregiver stress. The estimates indicate that reducing these stress factors would significantly reduce caregiver stress and, as a result, nursing home entry. We conclude that initiatives to reduce caregiver stress hold promise as a strategy to avoid or defer nursing home entry.

Validation of New Measures of Disability and Functioning in the National Health and Aging Trends Study

BACKGROUND Measurement gaps continue to hamper fuller understanding of late-life disability trends and dynamics. This article reports findings that validate the self-reported components of the disability protocol to be used in the new National Health and Aging Trends Study. The protocol was designed to redress existing measures by attending to environmental aspects of disability, capturing a broader range of capacity to perform tasks and including participation restriction items. METHODS We undertook an in-person validation study to determine the reliability, validity, and initial measurement properties of the National Health and Aging Trends Study self-reported disability protocol (n = 326). A random subset (n = 111) was readministered the protocol within 2-4 weeks. The interview and reinterview included new self-reported measures of physical capacity, activity limitations, and participation restrictions, as well as established performance and cognitive tests. We calculated percent agreement and kappa between interviews for all self-reported items and summary measures. We also assessed the construct validity of summary measures through correlations with demographic characteristics, frailty, memory, and performance-based mobility and confirmed whether activity limitations and participation restrictions were distinct domains. RESULTS New items and derived summary measures demonstrate robustness over a short time period, with kappas for retained/recommended items in the .60-.80 range. The summary measures correlate as expected with age, sex, residential status, and established performance-based constructs. Two factors, representing activity limitations and participation restrictions, were confirmed. CONCLUSIONS The National Health and Aging Trends Study protocol preserves the ability to examine more traditional measures of functioning while offering new insights into how activities are performed and preserving key conceptual distinctions.

Disability and care needs among older Americans.

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 caregivers, were substantial for older adults receiving help in the community (164 hours/month) and living in supportive care settings (50 hours/month). Nearly all of those getting help received informal care, and about 3 in 10 received paid care. Of those who had difficulty or received help in settings other than nursing homes, 32% had an adverse consequence in the last month related to an unmet need; for community residents with a paid caregiver, the figure was nearly 60%. CONCLUSIONS The older population-especially those with few economic resources-has substantial late-life care needs. Policies to improve long-term services and supports and reduce unmet need could benefit both older adults and those who care for them.

Behavioral Adaptation and Late-Life Disability: A New Spectrum for Assessing Public Health Impacts

OBJECTIVES To inform public health efforts to promote independent functioning among older adults, we have provided new national estimates of late-life disability that explicitly recognize behavioral adaptations. METHODS We analyzed the 2011 National Health and Aging Trends Study, a study of Medicare enrollees aged 65 years and older (n = 8077). For 7 mobility and self-care activities we identified 5 hierarchical stages--fully able, successful accommodation with devices, activity reduction, difficulty despite accommodations, and receipt of help--and explored disparities and associations with quality of life measures. RESULTS Among older adults, 31% were fully able to complete self-care and mobility activities. The remaining groups successfully accommodated with devices (25%), reduced their activities (6%), reported difficulty despite accommodations (18%), or received help (21%). With successive stages, physical and cognitive capacity decreased and symptoms and multimorbidity increased. Successful accommodation was associated with maintaining participation in valued activities and high well-being, but substantial disparities by race, ethnicity, and income existed. CONCLUSIONS Increased public health attention to behavioral adaptations to functional change can promote independence for older adults and may enhance quality of life.

Disability-Free Life Expectancy Over 30 Years: A Growing Female Disadvantage in the US Population

OBJECTIVES To examine changes in active life expectancy in the United States over 30 years for older men and women (aged ≥ 65 years). METHODS We used the 1982 and 2004 National Long Term Care Survey and the 2011 National Health and Aging Trends Study to estimate age-specific mortality and disability rates, the overall chances of survival and of surviving without disability, and years of active life for men and women. RESULTS For older men, longevity has increased, disability has been postponed to older ages, disability prevalence has fallen, and the percentage of remaining life spent active has increased. However, for older women, small longevity increases have been accompanied by even smaller postponements in disability, a reversal of a downward trend in moderate disability, and stagnation of active life as a percentage of life expectancy. As a consequence, older women no longer live more active years than men, despite their longer lives. CONCLUSIONS Neither a compression nor expansion of late-life disability is inevitable. Public health measures directed at older women to postpone disability may be needed to offset impending long-term care pressures related to population aging.

Older Adults Receiving Assistance With Physician Visits and Prescribed Medications and Their Family Caregivers: Prevalence, Characteristics, and Hours of Care

OBJECTIVES To profile older adults receiving assistance with physician visits and prescribed medications and the time demands associated with their care. METHODS Observational study of 7,197 community-dwelling adults ages 65+ responding to the 2011 National Health and Aging Trends Study. RESULTS More than one third of older adults receive assistance with either physician visits or prescribed medications (26.3%), or both (9.9%). The 3.3 million older adults who receive assistance with both physician visits and prescribed medications are a high-need subgroup: 3 in 5 have possible (16.5%) or probable (46.1%) dementia and three quarters (76.6%) receive help with mobility, self-care, or household activities. These 3.3 million older adults receive more than twice as many weekly hours of help with all activities (60.5 hr) as those receiving help with either physician visits or prescribed medications (26.5 hr), or neither (18.6 hr). Older adults receiving help with both physician visits and prescribed medications are assisted by 7.2 million helpers, most often adult children (46.6%), or spouses (23.6%). The 3.1 million helpers who assist with both physician visits and prescribed medications provide an average of 45.4 hr of help per week; nearly two thirds (64.3%) also assist with mobility or self-care. DISCUSSION Older adults receiving help with both physician visits and prescribed medications typically have high health and functioning needs that involve significant time demands for caregivers.