Residential Setting and the Cumulative Financial Burden of Dementia in the 7 Years Before Death

J Am Geriatr Soc. 2020 Jun;68(6):1319-1324. doi: 10.1111/jgs.16414. Epub 2020 Mar 18.


Objectives: 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.

Design: 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.

Setting: The HRS is a nationally representative longitudinal study of older adults in the United States.

Participants: We sampled HRS decedents from 2004 to 2015. To ensure complete data, we limited the sample to those 72 years or older at death who had continuous fee-for-service Medicare Parts A and B coverage during the 7-year period (n = 2909).

Measurements: We compared decedents with dementia at last HRS assessment with those without dementia across annual and cumulative 7-year spending measures, and personal characteristics. We present annual and cumulative spending by payer, and the changing proportion of spending by payer over time, comparing those with and without dementia and stratifying results by residential setting.

Results: 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).

Conclusion: 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. J Am Geriatr Soc 68:1319-1324, 2020.

Keywords: Medicare and Medicaid; community-dwelling older adults; dementia; health-related costs; nursing home.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Aged
  • Aged, 80 and over
  • Caregivers / economics
  • Caregivers / statistics & numerical data
  • Cost of Illness*
  • Dementia / economics*
  • Female
  • Health Expenditures / statistics & numerical data*
  • Home Care Services / statistics & numerical data
  • Humans
  • Insurance Claim Review / statistics & numerical data
  • Longitudinal Studies
  • Male
  • Medicaid / economics
  • Medicaid / statistics & numerical data*
  • Medicare / economics
  • Medicare / statistics & numerical data*
  • Nursing Homes / statistics & numerical data
  • Surveys and Questionnaires
  • Time Factors
  • United States