Paying for home care out-of-pocket is common and costly across the income spectrum among older adults.

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.