The Burden of Health Care Costs for Patients With Dementia in the Last 5 Years of Life
Open accessAbstract
BACKGROUND: Common diseases, particularly dementia, have large social costs for the U.S. population. However, less is known about the end-of-life costs of specific diseases and the associated financial risk for individual households. OBJECTIVE: To examine social costs and financial risks faced by Medicare beneficiaries 5 years before death. DESIGN: Retrospective cohort. SETTING: The HRS (Health and Retirement Study). PARTICIPANTS: Medicare fee-for-service beneficiaries, aged 70 years or older, who died between 2005 and 2010 (n = 1702), stratified into 4 groups: persons with a high probability of dementia or those who died because of heart disease, cancer, or other causes. MEASUREMENTS: Total social costs and their components, including Medicare, Medicaid, private insurance, out-of-pocket spending, and informal care, measured over the last 5 years of life; and out-of-pocket spending as a proportion of household wealth. RESULTS: Average total cost per decedent with dementia ($287 038) was significantly greater than that of those who died of heart disease ($175 136), cancer ($173 383), or other causes ($197 286) (P < 0.001). Although Medicare expenditures were similar across groups, average out-of-pocket spending for patients with dementia ($61 522) was 81% higher than that for patients without dementia ($34 068); a similar pattern held for informal care. Out-of-pocket spending for the dementia group (median, $36 919) represented 32% of wealth measured 5 years before death compared with 11% for the nondementia group (P < 0.001). This proportion was greater for black persons (84%), persons with less than a high school education (48%), and unmarried or widowed women (58%). LIMITATION: Imputed Medicaid, private insurance, and informal care costs. CONCLUSION: Health care expenditures among persons with dementia were substantially larger than those for other diseases, and many of the expenses were uncovered (uninsured). This places a large financial burden on families, and these burdens are particularly pronounced among the demographic groups that are least prepared for financial risk. PRIMARY FUNDING SOURCE: National Institute on Aging.
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Researchers comparing end-of-life costs in the last five years of life for individuals with and without dementia found that the total cost was $287,038 per person for individuals with dementia in 2010 dollars and $183,001 per person for individuals without dementia ($403,092 and $256,991, respectively, in 2022 dollars), a difference of 57%.
“Researchers comparing end-of-life costs in the last five years of life for individuals with and without dementia found that the total cost was $287,038 per person for individuals with dementia in 2010 dollars and $183,001 per person for individuals without dementia ($403,092 and $256,991, respectively, in 2022 dollars), a difference of 57%.722”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [722]
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Experimental — accuracy not yet measuredIn the last five years of life, total costs were $287,038 per person with dementia in 2010 dollars and $183,001 per person without dementia ($404,949 and $258,175 in 2023 dollars), a difference of 57%.
“Researchers comparing end‐of‐life costs in the last five years of life for individuals with and without dementia found that the total cost was $287,038 per person for individuals with dementia in 2010 dollars and $183,001 per person for individuals without dementia ($404,949 and $258,175, respectively, in 2023 dollars), a difference of 57%. 869”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [869]
The Results report $287,038 for decedents with dementia and $183,001 for other decedents over the last five years of life; the Methods specify 2010 U.S. dollars, and the Discussion describes the difference as 57%. The paper does not give the two 2023-dollar figures, so those amounts cannot be verified from this source. (LLM, conf=0.86)
Experimental — accuracy not yet measuredOut-of-pocket costs represent a substantially larger proportion of total wealth for those with dementia than for people without dementia (32% vs 11%).
“Out‐of‐pocket costs represent a substantially larger proportion of total wealth for those with dementia than for people without dementia (32% versus 11%).”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [869]
The Results report median out-of-pocket spending of 32% of total household wealth for the dementia group versus 11% for the non-dementia group. Those figures apply to people in the last five years of life, using wealth measured five years before death; the citing sentence omits that population and time frame. (LLM, conf=0.82)
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References 16 · Cited by 373
Research works printed but not linked: 1
- [4]Graaff JdV Social Cost New Palgrave Dictionary of Economics 1987 393 5 London
- Authors
- Kelley, A. S., McGarry, K., Gorges, R., & Skinner, J. S.
- Affiliations
- Dartmouth College (US)
- Venue
- Annals of Internal Medicine
- Publisher
- American College of Physicians
- Published
- 2015-11-17
- Volume
- 163
- Issue
- 10
- Pages
- 729-736
- ISSN
- 0003-4819 (ISSN-L)
- 1539-3704
- PMC
- PMC4809412
- OpenAlex
- W2172753107
- Cited by
- 373
- References
- 16
- Citations by year
- 2026: 15 · 2025: 39 · 2024: 28 · 2023: 31 · 2022: 35 · 2021: 39 · 2020: 44 · 2019: 45 · 2018: 39 · 2017: 33 · 2016: 23 · 2015: 1
- FWCI
- 77.06
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Annals of Internal Medicine (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (K23AG040774, U01AG046830, P01AG19783, U01AG009740, P01AG019783)
- Topics
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Healthcare Policy and Management
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Keywords
- dementia, end-of-life care costs, health care costs, out-of-pocket costs, informal care, family financial burden, Medicare beneficiaries, Medicaid, household wealth, racial and socioeconomic disparities, older adults, causes of death
- MeSH terms
- Aged, Aged, 80 and over, Dementia, Health Expenditures, Female, Medicare, Humans, Insurance, Health, Male, Medicaid, Retrospective Studies, Socioeconomic Factors, Terminal Care, United States, Cost of Illness
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