2020 Fall GAPNA Newsletter Volume 39 Issue 3

People with Dementia and Their Families Disproportionally Handle Costs of Care

People with dementia experience significantly higher costs of care compared to those without dementia, and the burden of those higher costs falls disproportionately on people with dementia and their families. Further, the financial expenditures shouldered by families was higher for people with dementia who lived in the community rather than in a residential facility such as a nursing home, according to researchers.

Investigators studied a subset of individuals who had continuous fee-for-service Medicare parts A and B coverage in the 7 years before death. Over the study period, the researchers calculated cost of care either covered by insurance (Medicare and Medicaid) or covered by the family (out-of-pocket medical care costs and estimated cost of informal care provided by family members). Costs were compared over time, by dementia status, and by residential status.

Overall costs were roughly equal for people with dementia regardless of where they lived – either in a nursing home or in the community. However, community-dwellers and their families paid, on average, 64% of the total cost, compared to 43% of the costs if the person with dementia lived in a nursing home. Meanwhile, people without dementia incurred a lower cost of care overall, particularly when they lived in the community rather than in a nursing home.


Kelley, A.S., McGarry, K., Bollens-Lund, E., Rahman, O-K., Husain, M., … Skinner, J.S.  (2020). Residential setting and the cumulative financial burden of dementia in the 7 years before death. Journal of the American Geriatrics Society, 68(6), 1319-1324.