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Cited by 164Dementia and Cognitive Impairment ResearchHealth Systems, Economic Evaluations, Quality of LifePalliative Care and End-of-Life Issues

Societal and Family Lifetime Cost of Dementia: Implications for Policy

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Jutkowitz, Eric, Kane, Robert L., Gaugler, Joseph E., MacLehose, Richard F., Dowd, Bryan, Kuntz, Karen M.·2017·Journal of the American Geriatrics Society
DOI 10.1111/jgs.15043PMC PMC5657516
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Abstract

Objectives: To estimate the cost of dementia and the extra cost of caring for someone with dementia over the cost of caring for someone without dementia. Design: We developed an evidence‐based mathematical model to simulate disease progression for newly diagnosed individuals with dementia. Data‐driven trajectories of cognition, function, and behavioral and psychological symptoms were used to model disease progression and predict costs. Using modeling, we evaluated lifetime and annual costs of individuals with dementia, compared costs of those with and without clinical features of dementia, and evaluated the effect of reducing functional decline or behavioral and psychological symptoms by 10% for 12 months (implemented when Mini‐Mental State Examination score ≤21). Setting: Mathematical model. Participants: Representative simulated U.S. incident dementia cases. Measurements: Value of informal care, out‐of‐pocket expenditures, Medicaid expenditures, and Medicare expenditures. Results: From time of diagnosis (mean age 83), discounted total lifetime cost of care for a person with dementia was $321,780 (2015 dollars). Families incurred 70% of the total cost burden ($225,140), Medicaid accounted for 14% ($44,090), and Medicare accounted for 16% ($52,540). Costs for a person with dementia over a lifetime were $184,500 greater (86% incurred by families) than for someone without dementia. Total annual cost peaked at $89,000, and net cost peaked at $72,400. Reducing functional decline or behavioral and psychological symptoms by 10% resulted in $3,880 and $680 lower lifetime costs than natural disease progression. Conclusion: Dementia substantially increases lifetime costs of care. Long‐lasting, effective interventions are needed to support families because they incur the most dementia cost.

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  • The total lifetime cost of care for someone with dementia was estimated at almost $400,000 in 2023 dollars.

    “The total lifetime cost of care for someone with dementia was estimated at almost $400,000 in 2023 dollars.”

    From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [429]

    The Abstract Results and Results sections estimate total lifetime care at $321,780 per person with dementia, reported in 2015 dollars. The paper does not give an estimate in 2023 dollars, so it does not itself support the figure of almost $400,000 in that currency year. (LLM, conf=0.87)

    Experimental — accuracy not yet measured

  • Seventy percent of the lifetime cost of care for someone with dementia is borne by family caregivers in the forms of unpaid caregiving and out-of-pocket expenses.

    “Seventy percent of this lifetime cost of care is borne by family caregivers in the forms of unpaid caregiving and out‐of‐pocket expenses for items ranging from medications to food for the person with dementia.”

    From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [429]

    The Results report that families incurred 70% of the lifetime cost of dementia care, comprising the value of informal care and cash out-of-pocket payments. The paper does not specify medications or food as examples of those payments, so that detail in the citing sentence is unsupported. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • The lifetime total cost of care, including out-of-pocket expenses, Medicare and Medicaid expenditures, and informal caregiving, is estimated at $321,780 per person with Alzheimer's dementia in 2015 dollars ($394,683 in 2023 dollars), more than twice the estimated lifetime cost for individuals without Alzheimer's dementia.

    “The lifetime total cost of care, including out‐of‐pocket expenses, Medicare and Medicaid expenditures, and informal caregiving is estimated at $321,780 per person with Alzheimer's dementia in 2015 dollars ($394,683 in 2023 dollars), more than twice the estimated lifetime cost for individuals without Alzheimer's dementia). 429”

    From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [429]

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Research works printed but not linked: 2

  1. [35]Gitlin L Hodgson N Choi S Marx KA Interventions to address functional decline in persons with dementia: closing the gap between what a person “does do” and what they ‘can do’ Parks RW Zec RF Bondi MW Jefferson AL Neuropsychology of Alzheimer’s Disease and Other Dementias 2nd Oxford University Press In Press
  2. [36]O’Neil ME Freeman M Portland VA A systematic evidence review of non-pharmacological interventions for behavioral symptoms of dementia Department of Veterans Affairs 2011 (http://www.hsrd.research.va.gov/publications/esp/Dementia-Nonpharm.pdf) 21634073

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Authors
Jutkowitz, E., Kane, R. L., Gaugler, J. E., MacLehose, R. F., Dowd, B., & Kuntz, K. M.
Affiliations
  • Brown University (US)
  • University of Minnesota (US)
Corresponding author
Jutkowitz, Eric
ORCID
Venue
Journal of the American Geriatrics Society
Publisher
Wiley
Published
2017-08-17
Volume
65
Issue
10
Pages
2169-2175
ISSN
  • 0002-8614 (ISSN-L)
  • 1532-5415
DOI
10.1111/jgs.15043
PMC
PMC5657516
OpenAlex
W2746470689
Cited by
164
References
46
Citations by year
2026: 7 · 2025: 22 · 2024: 20 · 2023: 22 · 2022: 29 · 2021: 19 · 2020: 15 · 2019: 17 · 2018: 11 · 2017: 2
FWCI
10.10
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Journal of the American Geriatrics Society (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institute on Aging (P30 AG019610, P30 AG013846, P50 AG008702, P50 AG025688, P50 AG047266, P30 AG010133, P50 AG005146, P50 AG005134, P50 AG016574, P50 AG005138, P30 AG008051, P30 AG013854, P30 AG008017, P30 AG010161, P50 AG047366, P30 AG010129, P50 AG016573, P50 AG016570, P50 AG005131, P50 AG023501, P30 AG035982, P30 AG028383, P30 AG010124, P50 AG005133, P50 AG005142, P30 AG012300, P50 AG005136, P50 AG033514, P50 AG005681, P50 AG047270, U01AG009740)
  • National Institutes of Health (U01 AG016976)
  • Agency for Healthcare Research and Quality (1R36HS024165–01)
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Keywords
dementia, informal care, Medicaid expenditures, Medicare spending, out-of-pocket costs, disease progression modeling, functional decline, behavioral and psychological symptoms, health policy
MeSH terms
Aged, 80 and over, Dementia, Health Expenditures, Female, Medicare, Humans, Male, Medicaid, Models, Theoretical, United States, Health Care Costs, Cost of Illness, Disease Progression

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