Abstract
Many older adults with personal care needs rely on paid caregivers to remain in the community ("home care"). Those without Medicaid or private long-term-care insurance must pay out-of-pocket for care. We used the Health and Retirement Study to identify the prevalence and financial burden of paying for home care out-of-pocket in 2002-2018, by income and dementia status. Over 600 000 people with personal care needs paid out-of-pocket for home care in a given year, 45% of whom have dementia. The quantity and cost of this care were substantial for people with dementia in particular: 51% of those with dementia paying out-of-pocket for home care spent ≥$1000/month. While the probability of paying out-of-pocket for home care increased sharply with income, 52% of people paying out-of-pocket for home care had incomes below 200% of the federal poverty line; this group faced high financial burdens of care. Policies aimed at easing the financial burden of home care are essential, particularly for low-income individuals with dementia who experience the greatest financial burden.