OBJECTIVES Care for older adults with dementia during the final years of life is costly, and families shoulder much of this burden. We aimed to assess the financial burden of care for those with and without dementia, and to explore differences across residential settings. DESIGN Using the Health and Retirement Study (HRS) and linked claims, we examined total healthcare spending and proportion by payer—Medicare, Medicaid, out‐of‐pocket, and calculated costs of informal caregiving—over the last 7 years of life, comparing those with and without dementia and stratifying by residential setting. SETTING The HRS is a nationally representative longitudinal study of older adults in the United States. PARTICIPANTS We sampled HRS decedents from 2004 to 2015. To ensure complete data, we limited the sample to those 72 years or older at death who had continuous fee‐for‐service Medicare Parts A and B coverage during the 7‐year period (n = 2909). MEASUREMENTS We compared decedents with dementia at last HRS assessment with those without dementia across annual and cumulative 7‐year spending measures, and personal characteristics. We present annual and cumulative spending by payer, and the changing proportion of spending by payer over time, comparing those with and without dementia and stratifying results by residential setting. RESULTS We found that, consistent with prior studies, people with dementia experience significantly higher costs, with a disproportionate share falling on patients and families. This pattern is most striking among community residents with dementia, whose families shoulder 64% of total expenditures (including $176,180 informal caregiving costs and $55,550 out‐of‐pocket costs), compared with 43% for people with dementia residing in nursing homes ($60,320 informal caregiving costs and $105,590 out‐of‐pocket costs). CONCLUSION These findings demonstrate disparities in financial burden shouldered by families of those with dementia, particularly among those residing in the community. They highlight the importance of considering the residential setting in research, programs, and policies. J Am Geriatr Soc 68:1319–1324, 2020.
University. We would also like to thank Lucy Zhang, BA, Stanford University, for technology and social media advice and Meghan Halley, PhD, Stanford University, for programmatic support. None of those acknowledged was compensated.1. Thompson LA, Rasmussen SA. What does the coronavirus disease 2019 (COVID-19) mean for families? JAMA Pediatr.
BACKGROUND/OBJECTIVES: The Medicare home health benefit provides episodic skilled home-based clinical care to the growing population of community-dwelling persons with dementia. As of January 1, 2020, home health payment changed: episodes shortened from 60 to 30 days, and episodes initiated in the community are now reimbursed at lower rates than episodes following institutional stays. We aim to assess the potential impact of these policy changes on this population. DESIGN/SETTING: Cross-sectional study using the Medicare claims-linked National Health and Aging Trends Study (NHATS). PARTICIPANTS: A total of 1,867 NHATS respondents who received home health between 2011 and 2017. MEASUREMENTS: Dementia was defined through both selfreport and a validated cognitive assessment through NHATS. We described the demographic, socioeconomic, and health characteristics of older adults with dementia receiving home health compared with those without dementia. We then assessed the association of dementia with both receiving community-initiated home health (vs postinstitutional) and visit timing during the home health episode. RESULTS: Over a follow-up period of just over 4 years, 50.2% of persons with dementia used home health compared with 15.3% of persons without dementia. Most home health provided to persons with dementia was initiated in the community (61%), compared with 37% of episodes provided to persons without dementia. Persons with dementia were more likely to receive care in days 31 to 60 of the episode compared with those without dementia. CONCLUSIONS: Shortening episodes and reimbursing community-initiated episodes at lower rates may disproportionately impact the highly vulnerable population of older adults with dementia, who receive more communityinitiated care over longer time periods. Our work highlights the need to better understand the unique role of home health in meeting gaps in both acute-and long-term care systems for older adults with dementia.
Some public health practices, especially those focused on weight loss, have been found to increase weight stigma, which is harmful to physical and mental health. We used the Delphi method to establish expert consensus on how to address weight stigma in public health. Our participants were recruited from a convenience sample of individuals attending a single-day symposium on public health prevention of eating disorders, though they reported having high levels of formal (education, employment) and informal (advocacy, lived experience in eating disorders) expertise, all of which was relevant to weight stigma. Three online surveys were completed by 88 experts. Of the 177 ideas presented, 68 were endorsed and 109 were rejected. Experts reached consensus on an array of topics: cross-disciplinary collaboration, the need for inclusivity and diversity, defining how weight stigma arises in research and practice, and advocating for change in popular culture and industry. Experts also agreed on the need to shift focus away from body weight toward health behaviors; however, they did not reach consensus on how to make that shift. Although this study requires replication with a larger and more diverse sample of experts, these initial outcomes provide clear recommendations for changes in public health research, practice, and policy, and highlight areas for further research.
IMPORTANCE: A large and growing population of older adults with multimorbidity, cognitive impairment, and functional disability live in the community, but many never or rarely leave their homes. Being homebound is associated with decreased access to medical services, poor health outcomes, and increased mortality. Yet, it is unknown what factors, in particular socioeconomic factors, are associated with new onset of homebound status. OBJECTIVE: To evaluate the association between income and risk of becoming homebound. DESIGN: Observational cohort study using 2011 to 2018 data from the National Health and Aging Trends Study, a nationally representative sample of Medicare beneficiaries aged 65 years and older. SETTING: Population-based study in the United States. PARTICIPANTS: A total of 7,042 initially nonhomebound community-dwelling older adults. EXPOSURE: Total annual household income at baseline (in 2011) measured via self-report. OUTCOME: Annual measure of homebound status, defined as leaving home an average of 1 d/wk or less. RESULTS: Over 7 years, 15.81% of older adults in the lowest income quartile (≤$15,003) became homebound, compared with only 4.64% of those in the highest income quartile (>$60,000). In a competing risks analysis accounting for risks of death and nursing home admission, and adjusted for clinical and demographic characteristics, those in the lowest income quartile had a substantially higher subhazard of becoming homebound than those in the highest income quartile (1.65; 95% confidence interval = 1.20-2.29). Moreover, we see evidence of a gradient in risk of homebound status by income quartile. CONCLUSION AND RELEVANCE: Our work demonstrates that financial resources shape the risk of becoming homebound, which is associated with negative health consequences. In the context of existing income disparities, more support is needed to assist older adults with limited financial resources who wish to remain in the community.
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