Family and friends are the predominant providers of end-of-life care (EOL). Yet knowledge of the caregiving experience at the EOL has been constrained by a narrow focus on specific diseases or the “primary” caregiver and methodological limitations due to reliance on convenience samples, or recall biases associated with mortality follow-back study design. Using prospective, linked nationally representative datasets of Medicare beneficiaries and their caregivers, we found that in 2011 900,000 older adults at the EOL received support from 2.3 million paid and unpaid caregivers. Nearly 9 in 10 of these caregivers were family members or unpaid. EOL caregivers provided more extensive care and reported more care-related challenges (e.g., physical difficulty) than non-EOL caregivers. EOL challenges were especially prevalent among caregiving spouses. To meet the needs of older adults at the EOL, families and unpaid caregivers must be better recognized and integrated in care delivery and supportive services must be expanded and made more widely available.

Prospective identification of older adults with serious illness is feasible using clinically accessible criteria and may be a critical step toward improving health care value. These definitions may aid clinicians and health systems in targeting patients who could benefit from additional services.

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers—that is, the only caregivers (paid or unpaid) who provided assistance with a spouse’s self-care or household activities—would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.

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.