The Burden of Care for Adults with Dementia: Impact on Care Quality and Family Outcomes
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Project Abstract: Care for older adults with Alzheimer's disease and related dementias (ADRD) during the final years of life is extremely costly and families carry a high share of this burden. Costs and shifting patterns of year-over-year spending are likely associated with adverse care quality and family financial outcomes, yet to date individual- level, comprehensive, longitudinal data on spending and its effect on outcomes have not been examined. Existing data also demonstrate that those vulnerable subgroups least able to cope are at greatest financial risk, which may result in further disparities in outcomes. Therefore, this project aims to understand the magnitude of this healthcare spending and its distribution across payers and families over time and how this spending contributes to disparities in care quality and family outcomes among older adults with dementia, particularly among vulnerable and underserved populations. The study will assemble data that capture total healthcare spending and proportion by payer (i.e., Medicare, Medicaid, individuals, families, and others), using the nationally-representative Health and Retirement Study and linked Medicare and Medicaid claims data. Specifically, the project will 1) Compare yearly patterns of total health-related costs and proportion of costs paid by Medicare, Medicaid, out-of-pocket, informal caregiving, and other payers, in each of the last 5 years of life among older adults with or without ADRD and across vulnerable subgroups; 2) Test if out-of-pocket costs exceeding household wealth are associated with indicators of care quality (nursing home admission for long- term care, ≥3 transitions across care sites in the last 90 days of life, suboptimal hospice use, i.e. enrollment >6 months or <3 days, and in-hospital death) among older adults with or without ADRD and across vulnerable subgroups; and 3) Examine if out-of-pocket costs exceeding household wealth are associated with potentially adverse intergenerational family financial outcomes (cohabitation, caregiving and financial support by adult children) among older adults with or without ADRD and across vulnerable subgroups. The results will directly inform health and social policy, and help to ensure high quality care for older adults with ADRD, while avoiding impoverishment of families and compounding of racial and socioeconomic disparities.
