Journal of the American Geriatric Society
Kelley AS, McGarry K, Bollens-Lund E, Rahman OK, Husain M, Ferreira KB, Skinner JS.
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. 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. 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). 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.
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