The Changing Demography of Late-Life Family Caregiving: A Research Agenda to Understand Future Care Networks for an Aging U.S. Population.

Repeated claims that a dwindling supply of potential caregivers is creating a crisis in care for the U.S. aging population have not been well-grounded in empirical research. Concerns about the supply of family care do not adequately recognize factors that may modify the availability and willingness of family and friends to provide care to older persons in need of assistance or the increasing heterogeneity of the older population. In this paper, we set forth a framework that places family caregiving in the context of older adults' care needs, the alternatives available to them, and the outcomes of that care. We focus on care networks, rather than individuals, and discuss the demographic and social changes that may alter the formation of care networks in the future. Last, we identify research areas to prioritize in order to better support planning efforts to care for the aging U.S. population.

Metro-Nonmetro Differences in Adverse Events in Residential Care Communities: Results From the National Post-Acute and Long-Term Care Study.

More than 1 in 5 older Americans live in rural areas (10.6 million of the 46.2 million aged 65 and older). Long-term care for aging rural populations is a growing challenge in the United States. Research on long-term care services in nonmetro areas has focused almost exclusively on nursing home care, despite growth of residential care alternatives. This paper uses unique facility-level data from the 2020 National Post-acute and Long-term Care Study (NPALS) to examine the relationship of residential care community (RCC) features in metro and nonmetro settings with adverse outcomes (emergency department visits, overnight hospital stays, and falls). Nationally, in 2020, about 13.5% of RCC residents made visits to the emergency department, 8.6% had overnight hospital stays, and 21.3% had falls. Controlling for facility characteristics, RCCs in metro areas had higher risks of overnight hospital stays (p < .001) but lower risks of falls (p = .06).

Disaster Preparedness Among Older Japanese Adults With Long-Term Care Needs and Their Family Caregivers.

OBJECTIVE: In the 2011 Great East Japan Earthquake, as in Hurricanes Katrina and Rita in the United States, older individuals were at the greatest risk of mortality. Much concern has been raised about developing plans to reduce these risks, but little information has been provided about preparedness, and the key role played by caregivers has been largely unexplored. The aims of this study were thus to examine the preparedness of family caregivers of older adults with long-term care needs and to identify the characteristics of older adults and their caregivers that are associated with poor preparedness and greater concern about disasters. METHODS: Shortly after the Great East Japan Earthquake, the second wave of the Fukui Longitudinal Caregiver Study was administered to the family caregivers of older Japanese individuals with long-term care needs. The sample included 952 caregivers from 17 municipalities in Fukui prefecture. Logistic regression analyses were used to identify the factors associated with self-assessed preparedness, evacuation planning, and caregivers' concerns about preparedness. RESULTS: The majority (75%) of the caregivers had no concrete plans for evacuation in an emergency, and those caring for persons with dementia were 36% less likely to have any plan. In multivariate models, caregivers who were more experienced and wealthier and who reported more family and community support were more likely to feel well prepared. Caregivers with poor health or limited financial resources or who were responsible for older persons with mobility difficulties reported higher levels of anxiety about their disaster preparedness. CONCLUSIONS: This study indicates that most caregivers are ill prepared to respond in emergencies and that caregiver resources, community support, and the needs of older care recipients influence both preparedness and concern about disasters. Education for caregivers and the development of community support programs could provide important sources of assistance to this vulnerable group. (Disaster Med Public Health Preparedness. 2017;11:31-38).

Social Changes in Women's Roles, Families, and Generational Ties.

There has been much speculation around the aging of the Baby Boom Generation because they were at the forefront of turbulent social changes in women's roles, marriage, and childbearing. This article addresses the ways in which population aging is intertwined with family change, and how intergenerational relations in later life are being transformed by social and demographic changes. Increasing diversity of family types and potentially weaker family ties raise the possibility of challenges to come in the next century.

Disability Measurement in the Health and Retirement Study.

The Health and Retirement Study (HRS) has provided extensive and detailed national data on disability since it began in 1992, and has been used extensively in studies of disability trends and trajectories. We summarize conceptual frameworks used to characterize disability and review the HRS measures of functioning, work disability, and employer accommodations. HRS survey questions have experienced changes in wording, skip logic, or other design features over the life of the study, and we comment on the analytic challenges posed by those changes. Among our conclusions are (1) work disability and benefit eligibility are important concepts that should be considered for redesign to better reflect current concepts and policy issues; (2) methodological studies of changes in wording or skip logic should be undertaken; and (3) minor additions to survey content in areas such as temporal reference periods or changes in social-participation activities would improve measurement.

"It's got to be on this page": age and cognitive style in a study of online health information seeking.

BACKGROUND: The extensive availability of online health information offers the public opportunities to become independently informed about their care, but what affects the successful retrieval and understanding of accurate and detailed information? We have limited knowledge about the ways individuals use the Internet and the personal characteristics that affect online health literacy. OBJECTIVE: This study examined the extent to which age and cognitive style predicted success in searching for online health information, controlling for differences in education, daily Internet use, and general health literacy. METHODS: The Online Health Study (OHS) was conducted at Johns Hopkins School of Public Health and Stanford University School of Medicine from April 2009 to June 2010. The OHS was designed to explore the factors associated with success in obtaining health information across different age groups. A total of 346 men and women aged 35 years and older of diverse racial and ethnic backgrounds participated in the study. Participants were evaluated for success in searching online for answers to health-related tasks/questions on nutrition, cancer, alternative medicine, vaccinations, medical equipment, and genetic testing. RESULTS: Cognitive style, in terms of context sensitivity, was associated with less success in obtaining online health information, with tasks involving visual judgment most affected. In addition, better health literacy was positively associated with overall success in online health seeking, specifically for tasks requiring prior health knowledge. The oldest searchers were disadvantaged even after controlling for education, Internet use, general health literacy, and cognitive style, especially when spatial tasks such as mapping were involved. CONCLUSIONS: The increasing availability of online health information provides opportunities to improve patient education and knowledge, but effective use of these resources depends on online health literacy. Greater support for those who are in the oldest cohorts and for design of interfaces that support users with different cognitive styles may be required in an age of shared medical decision making.

The potential for technology to enhance independence for those aging with a disability.

Technologies of all kinds can sustain and accelerate improvements in health and quality of life for an aging population, and enhance the independence of persons with disabilities. Assistive technologies are widely used to promote independent functioning, but the aging of users and their devices produces unique challenges to individuals, their families, and the health care system. The emergence of new "smart" technologies that integrate information technology with assistive technologies has opened a portal to the development of increasingly powerful, individualized tools to assist individuals with disabilities to meet their needs. Yet, issues of access and usability remain to be solved for their usefulness to be fully realized. New cohorts aging with disabilities will have more resources and more experience with integrated technologies than current elders. Attention to technological solutions that help them adapt to the challenges of later life is needed to improve quality of life for those living long lives with disabilities.

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.

Assistive devices in context: cross-sectional association between challenges in the home environment and use of assistive devices for mobility.

PURPOSE: A primary goal for aging policy is to optimize independence in later life. We estimate the cross-sectional association between physical and social challenge in the home environment and use of assistive devices (AD) for mobility in the home, controlling for lower extremity physical performance (short physical performance battery [SPPB]) and other factors. DESIGN AND METHODS: Data are from the Women's Health and Aging Study I, a prospective study of the factors related to physical disability in a sample of moderately to severely disabled older women. We describe these associations in the baseline sample overall and also within subsets who do and do not have both a baseline and a 3-year follow-up observation. RESULTS: On average, physical challenge in the home environment is inversely associated with level of AD use (p < .05) in the overall sample, independent of SPPB, living alone, and other factors. We do not find a significant (p < .05) association between social challenge and the level of AD use in the overall sample. Findings by follow-up responder status were similar (with minor variability). IMPLICATIONS: Future cohorts who are better educated and more receptive to technology may confront challenges in the home environment that limit their ability to age in place. Our findings suggest that the physical challenges of the home are significantly related to AD use. Future analyses that explore the mechanisms of the home environment as a source of challenges to independent functioning could help in the design of future interventions for these cohorts as they age.

Reliability and validity of self-care and mobility accommodations measures in the National Health and Aging Trends Study.

PURPOSE OF THE STUDY: Comprehensive measures of disability accommodations have been lacking in national health and aging studies. This article introduces measures of accommodations developed for the National Health and Aging Trends Study, evaluates their reliability, and explores the validity and reliability of hierarchical classification schemes derived from these measures. DESIGN AND METHODS: We examined test-retest reliability for questions about assistive device use, doing activities less often, and getting help from another person with both percentage agreement and kappa (N = 111). Summary measures across activities and several hierarchical classification schemes (e.g., no accommodation, devices/activity reductions only, help) were developed. For the latter, we also evaluated validity by examining correlations with measures of capacity and demographic characteristics (N = 326). RESULTS: Items about assistive device use and help in the last month were robust (most kappas 0.7-0.9). Activity reduction measures were moderately reliable (around 0.5) but still showed reasonable agreement. Reliabilities for summary measures were good for device use (0.78-0.89) and help (0.62-0.67) but lower, albeit acceptable, for activity reduction (0.53). Hierarchical classifications had acceptable reliability and levels demonstrated hierarchical properties. IMPLICATIONS: National Health and Aging Trends Study's self-care and mobility accommodation measures offer ample reliability to study adaptation to limitations and can be used to construct a reliable and valid hierarchy.

Why do lifespan variability trends for the young and old diverge? A perturbation analysis.

BACKGROUND: Variation in lifespan has followed strikingly different trends for the young and old: while total lifespan variability has decreased as life expectancy at birth has risen, the variability conditional on survival to older ages has increased. These diverging trends reflect changes in the underlying demographic parameters determining age-specific mortality. OBJECTIVE: We ask why the variation in the ages at death after survival to adult ages has followed a different trend than the variation at younger ages, and aim to explain the divergence in terms of the age pattern of historical mortality changes. METHODS: Using simulations, we show that the empirical trends in lifespan variation are well characterized using the Siler model, which describes the mortality trajectory using functions representing early-life, later-life, and background mortality. We then obtain maximum likelihood estimates of the Siler parameters for Swedish females from 1900 to 2010. We express mortality in terms of a Markov chain model, and apply matrix calculus to compute the sensitivity of age-specific variance trends to the changes in Siler model parameters. RESULTS: Our analysis quantifies the influence of changing demographic parameters on lifespan variability at all ages, highlighting the influence of declining childhood mortality on the reduction of lifespan variability, and the influence of subsequent improvements in adult survival on the rising variability of lifespans at older ages. CONCLUSIONS: These findings provide insight into the dynamic relationship between the age pattern of survival improvements and time trends in lifespan variability.

Gender and Material Transfers between Older Parents and Children in Ismailia, Egypt.

In Egypt, kin relations have been governed by a patriarchal contract, which defines expectations for intergenerational support along gendered lines. Social changes may be disrupting these customs and bringing attention to the ways gender may influence intergenerational support in rapidly changing contexts. Using data from 4,465 parent-child dyads in Ismailia, Egypt, we examined whether intergenerational material transfers favored women over men and whether gaps in needs and endowments accounted for gender differences in transfers. Fathers gave children money and goods more often than did mothers; mothers received material transfers from children more often than did fathers. Compared to sons, daughters made transfers to parents less often and received transfers from parents more often. We found residual advantages to mothers and daughters, even adjusting for differential needs and endowments. Findings corroborate persistent norms of gender complementarity, patrilocal endogamy, and reciprocation for women's caregiving, despite changes that have threatened patriarchal rules of exchange.

Effects of home, outside leisure, social, and peer activity on psychological health among Japanese family caregivers.

OBJECTIVE: Previous research has indicated that informal caregivers' personal activities are disrupted by their caregiving role, leading to psychological stress and lower life satisfaction. However, the extent to which engagement in personal activities affects caregivers' psychological health remains unclear. This study examines the relationship between different types and frequencies of activities and both positive and negative parameters of the psychological health of caregivers. METHODS: A mail survey was conducted with 727 family caregivers of older persons using adult day-care services in the Tokyo metropolitan area. Perceived caregiver burden, care satisfaction, life satisfaction, and depression were used as psychological health outcomes. Engagement in home, outside leisure, social, and peer activities, as well as caregiver and care-recipient characteristics and caregiving situations, were assessed using a multivariate regression analysis. RESULTS: Engagement in home activities was related to lower scores on burden and depression and greater care satisfaction after controlling for care needs and caregiver characteristics, and social and peer activities were associated with greater life satisfaction. More frequent engagement was also associated with better psychological health, but a moderate involvement in home activities was most strongly associated with better care satisfaction. The amount of outside leisure activity was not significantly related to any of the outcomes. CONCLUSION: This study shows that activity type and frequency are associated with caregivers' psychological health, extending previous findings and providing practical implications for the support of family caregivers through programs to improve their participation in specific types of activities.

A quality-of-life scale for assistive technology: results of a pilot study of aging and technology.

BACKGROUND: In an aging society, it is increasingly important to understand how assistive devices can be used by older people to maintain quality of life despite chronic disabilities. Assistive technology is a mainstay of physical therapist practice, but the potential for device use to affect psychosocial well-being is not yet understood at the population level. OBJECTIVE: The objective of this study was to develop a parsimonious indicator that can be used in population-based surveys to represent the effect of assistive technologies on quality of life for older people, separate from personal assistance. DESIGN: This study was a cross-sectional survey. METHODS: /b> The methods used in this study were psychometric scale development and structural equation modeling. RESULTS: The results indicated that a parsimonious, valid, and reliable scale reflecting quality of life related to assistive device use can be created from 3 questions designed to measure improvements in safety, control, and participation due to technology. The findings also suggested that assistive technology may more effectively improve quality of life for people with greater levels of functional limitations. LIMITATIONS: The data were derived from a cross-sectional survey conducted by telephone. The use of personal assistance, on average, was low; thus, the applicability to a population with more profound care needs has yet to be confirmed. CONCLUSIONS: Determining the broader impact of assistive technology on quality of life with population-level measures may provide insight into how best to leverage technologies to prevent dependence in aging adults.

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.

Grandparental caregiving, income inequality and respiratory infections in elderly US individuals.

BACKGROUND: Pneumonia and influenza (P&I) is a major cause of morbidity and mortality in the USA, particularly in elderly people. Recent research indicates that P&I may be linked to socioeconomic conditions associated with interactions of children with vulnerable elderly people that may proliferate the spread of disease. This study assessed the associations between four sociodemographic characteristics--median county income, Gini index, youth dependency ratio and proportion of co-residential caregiver grandparents--and P&I on the county level overall and by age group. METHODS: All hospitalisations due to P&I from 1991 to 2004 were abstracted from the Centers for Medicare and Medicaid Services database and categorised by influenza year (July-June) and age category. Using generalised estimating equations, associations between P&I rates and four sociodemographic variables were assessed and models were stratified by income to assess income as a potential effect modifier. RESULTS: P&I rates were higher in counties with lower median income. In low-income counties, high levels of live-in grandparental caregivers were associated with consistently higher levels of pneumonia and influenza rates. The Gini index was positively associated with disease rates, particularly in younger age groups. DISCUSSION: These results suggest complex relationships between sociodemographic characteristics and P&I outcomes for elderly people, particularly those related to children. The strength of the relationship between the proportion of grandparental caregivers and disease rates decreases with age, which may caregiving patterns, or may serve as a proxy for related sociodemographic characteristics. These findings merit further research to understand better how area-level factors affect P&I patterns in elderly people.

The implications of increased survivorship for mortality variation in aging populations.

The remarkable growth in life expectancy during the twentieth century inspired predictions of a future in which all people, not just a fortunate few, will live long lives ending at or near the maximum human life span. We show that increased longevity has been accompanied by less variation in ages at death, but survivors to the oldest ages have grown increasingly heterogeneous in their mortality risks. These trends are consistent across countries, and apply even to populations with record-low variability in the length of life. We argue that as a result of continuing improvements in survival, delayed mortality selection has shifted health disparities from early to later life, where they manifest in the growing inequalities in late-life mortality.

Propositional density and cognitive function in later life: findings from the Precursors Study.

OBJECTIVES: We used longitudinal data from the Johns Hopkins Precursors Study to test the hypothesis that written propositional density measured early in life is lower for people who develop dementia categorized as Alzheimer's disease (AD). This association was reported in 1996 for the Nun Study, and the Precursors Study offered an unprecedented chance to reexamine it among respondents with different gender, education, and occupation profiles. METHODS: Eighteen individuals classified as AD patients (average age at diagnosis: 74) were assigned 2 sex-and-age matched controls, and propositional density in medical school admission essays (average age at writing: 22) was assessed via Computerized Propositional Idea Density Rater 3 linguistic analysis software. Adjusted odds ratios (ORs) for the matched case-control study were calculated using conditional (fixed-effects) logistic regression. RESULTS: Mean propositional density is lower for cases than for controls (4.70 vs. 4.99 propositions per 10 words, 1-sided p = .01). Higher propositional density substantially lowers the odds of AD (OR = 0.16, 95% confidence interval = 0.03-0.90, 1-sided p = .02). DISCUSSION: Propositional density scores in writing samples from early adulthood appear to predict AD in later life for men as well as women. Studies of cognition across the life course might beneficially incorporate propositional density as a potential marker of cognitive reserve.

Childhood Hib vaccination and pneumonia and influenza burden in US seniors.

This analysis examines the potential for the elderly to receive indirect protection from pneumonia and influenza (P&I) from vaccination of children. Using data from the Centers for Medicare and Medicaid Services, the National Immunization Survey, and the Behavioral Risk Factor Surveillance System, mixed-effects models were used to assess associations between vaccination coverage and P&I on the state level overall and by urbanicity and income. As vaccination coverage in children increased, the state-level P&I rates in seniors decreased (beta=-0.040, -0.074 to 0.006), where beta represents the expected change in the logged age-associated rate of disease increase for a one-percentage point increase in vaccination coverage. Increasing vaccination coverage in the elderly was associated with an increase in P&I rates (beta=0.045, 0.011-0.077) in seniors. The degree of association was more prominent in urban and high income areas. The consistent associations between influenza in the elderly and vaccination coverage in children suggest that routine vaccination of children may impart some indirect protection to the elderly.

Parity and parents' health in later life: the gendered case of Ismailia, Egypt.

We investigate the relationship between reproduction and functional health in later life among women and men in the resource-poor and gender-stratified setting of Ismailia governorate, Egypt. Analyses of survey data collected in 2003 show a statistically significant positive association between parity and difficulty with activities of daily living (ADLs), controlling for demographic and socio-economic factors and other co-morbid conditions. We also find that the number of daughters (but not sons) is associated with worse physical functioning, and this association is more pronounced for older fathers than for older mothers. Our results indicate that both biological and social pathways link fertility and later-life health in this context, and that prescribed familial roles may underlie the differential impact of sons and daughters on the health of mothers and fathers in later life.