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Cited by 54Dementia and Cognitive Impairment ResearchPalliative Care and End-of-Life IssuesHealthcare Policy and Management

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

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Kelley, Amy S., McGarry, Kathleen, Bollens‐Lund, Evan, Rahman, Omari‐Khalid, Husain, Mohammed, Ferreira, Katelyn B., Skinner, Jonathan S.·2020·Journal of the American Geriatrics Society
DOI 10.1111/jgs.16414PMC PMC7957824
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Abstract

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.

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Crossref · 10.1111/jgs.16414

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  • One group of researchers found that out-of-pocket and informal caregiving costs for a family member with dementia total $203,117 in 2016 dollars ($238,946 in 2022 dollars) in the last seven years of life, compared with $102,955 in 2016 dollars ($121,116 in 2022 dollars) for those without dementia.

    “One group of researchers found that out-of-pocket and informal caregiving costs for a family member with dementia total $203,117 in 2016 dollars ($238,946 in 2022 dollars) in the last seven years of life,”

    From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [533]

    The Results report average out-of-pocket and informal caregiving costs over the last seven years of life of $203,110 for families of people with dementia and $102,960 for other families. The Methods (Expenditure Measures) say costs were adjusted to 2016 dollars. The cited paper does not give the claim’s slightly different 2016 figures or its 2022-dollar conversions. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • Caregivers living with a family member with dementia pay for 64% of total care costs incurred during their family members' last seven years of life.

    “In addition, caregivers living with a family member with dementia pay for 64% of total care costs incurred during their family members' last seven years of life.533”

    From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [533]

    The Results (page not provided) report that informal caregiving costs and out-of-pocket spending together accounted for 64% of total expenditures for community-dwelling people with dementia over the last seven years of life. The paper does not say that the caregivers lived with the person with dementia, and the 64% includes the estimated value of caregiving time, not just costs caregivers paid. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • Caregivers living with a family member with dementia pay for 64% of total care costs incurred during their relatives' last seven years of life.

    “In addition, caregivers living with a family member with dementia pay for 64% of total care costs (e.g., total health care spending and out‐of‐pocket costs) incurred during their relatives' last seven years of life. 581”

    From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [581]

    The Results report that informal caregiving and out-of-pocket expenditures together made up 64% of total costs over the last seven years of life for community-dwelling people with dementia. The paper does not establish that their caregivers lived with them, and the 64% includes the estimated cost of caregiving time, not just costs caregivers paid. (LLM, conf=0.90)

    Experimental — accuracy not yet measured

  • Out-of-pocket and informal caregiving costs for a family member with dementia total $203,117 in 2016 dollars ($240,046 in 2023 dollars) in the last seven years of life, compared with $102,955 in 2016 dollars ($121,674 in 2023 dollars) for those without dementia.

    “One group of researchers found that out‐of‐pocket and informal caregiving costs for a family member with dementia total $203,117 in 2016 dollars ($240,046 in 2023 dollars) in the last seven years of life, compared with $102,955 in 2016 dollars ($121,674 in 2023 dollars) for those without dementia. 581”

    From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [581]

    The Results (page unavailable) report average out-of-pocket and informal caregiving costs over the last seven years of life of $203,110 for families of people with dementia and $102,960 for other families, rather than the cited $203,117 and $102,955. The Methods say costs were adjusted to 2016 dollars; the paper does not provide the quoted 2023-dollar conversions. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • Informal caregiving costs in the last seven years of life were considerably higher for households with a family member with dementia living in the community compared with households with a family member with dementia living in a nursing home ($231,730 vs $165,910 in 2016 dollars [$273,862 vs $196,075 in 2023 dollars]).

    “However, informal caregiving costs in the last seven years of life were considerably higher for households with a family member with dementia living in the community compared with households with a family member with dementia living in a nursing home ($231,730 versus $165,910 in 2016 dollars [$273,862 versus $196,075 in 2023 dollars]), due to Medicaid covering the cost of nursing home care for”

    From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [581]

    The Results report substantially higher informal caregiving costs for community-dwelling people with dementia than for nursing-home residents. But the cited $231,730 and $165,910 are the sums of informal caregiving and out-of-pocket costs, not informal caregiving costs alone; those are $176,180 and $60,320, respectively, in 2016 dollars. The Methods specify 2016-dollar adjustment; the paper does not report the citing document’s 2023-dollar conversions. (LLM, conf=0.91)

    Experimental — accuracy not yet measured

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Authors
Kelley, A. S., McGarry, K., Bollens‐Lund, E., Rahman, O., Husain, M., Ferreira, K. B., & Skinner, J. S.
Affiliations
  • James J. Peters VA Medical Center (US)
  • University of California, Los Angeles (US)
  • Icahn School of Medicine at Mount Sinai (US)
  • Dartmouth College (US)
Corresponding author
Kelley, Amy S.
ORCID
Venue
Journal of the American Geriatrics Society
Publisher
Wiley
Published
2020-03-18
Volume
68
Issue
6
Pages
1319-1324
ISSN
  • 0002-8614 (ISSN-L)
  • 1532-5415
DOI
10.1111/jgs.16414
PMC
PMC7957824
OpenAlex
W3012407527
Cited by
54
References
16
Citations by year
2026: 4 · 2025: 18 · 2024: 6 · 2023: 11 · 2022: 5 · 2021: 8 · 2020: 2
FWCI
4.73
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Journal of the American Geriatrics Society (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institute on Aging (R01AG054540, U01AG009740)
  • U.S. Social Security Administration
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Healthcare Policy and Management
Keywords
dementia, financial burden, informal care, residential settings, nursing homes, community-dwelling older adults, health care spending, out-of-pocket costs, family caregivers, Medicare, Medicaid, end-of-life care, older adults
MeSH terms
Aged, Aged, 80 and over, Dementia, Health Expenditures, Female, Medicare, Home Care Services, Humans, Insurance Claim Review, Longitudinal Studies, Male, Medicaid, Nursing Homes, Surveys and Questionnaires, Time Factors, United States, Caregivers, Cost of Illness

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