Societal and Family Lifetime Cost of Dementia: Implications for Policy

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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.

Original languageEnglish (US)
Pages (from-to)2169-2175
Number of pages7
JournalJournal of the American Geriatrics Society
Issue number10
StatePublished - Oct 2017

Bibliographical note

Funding Information:
The National Alzheimer’s Coordinating Center (NACC) database is funded by National Institute on Aging (NIA), National Institutes of Health Grant U01 AG016976. NACC data are contributed by the NIA-funded ADCs: P30 AG019610 (PI Eric Reiman, MD), P30 AG013846 (PI Neil Kowall, MD), P50 AG008702 (PI Scott Small, MD), P50 AG025688 (PI Allan Levey, MD, PhD), P50 AG047266 (PI Todd Golde, MD, PhD), P30 AG010133 (PI Andrew Say-kin, PsyD), P50 AG005146 (PI Marilyn Albert, PhD), P50 AG005134 (PI Bradley Hyman, MD, PhD), P50 AG016574 (PI Ronald Petersen, MD, PhD), P50 AG005138 (PI Mary Sano, PhD), P30 AG008051 (PI Steven Ferris, PhD), P30 AG013854 (PI M. Marsel Mesulam, MD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Bennett, MD), P50 AG047366 (PI Victor Henderson, MD, MS), P30 AG010129 (PI Charles DeCarli, MD), P50 AG016573 (PI Frank LaFerla, PhD), P50 AG016570 (PI Marie-Francoise Chesselet, MD, PhD), P50 AG005131 (PI Douglas Galasko, MD), P50 AG023501 (PI Bruce Miller, MD), P30 AG035982 (PI Russell Swerdlow, MD), P30 AG028383 (PI Linda Van Eldik, PhD), P30 AG010124 (PI John Tro-janowski, MD, PhD), P50 AG005133 (PI Oscar Lopez, MD), P50 AG005142 (PI Helena Chui, MD), P30 AG012300 (PI Roger Rosenberg, MD), P50 AG005136 (PI Thomas Montine, MD, PhD), P50 AG033514 (PI Sanjay Asthana, MD, FRCP), P50 AG005681 (PI John Morris, MD), and P50 AG047270 (PI Stephen Strittmatter, MD, PhD). The Health and Retirement Study is produced and distributed by the University of Michigan with funding from NIA Grant NIA U01AG009740). RAND HRS Data, Version N. Produced by the RAND Center for the Study of Aging, with funding from NIA and the Social Security Administration, Santa Monica, California.

Funding Information:
Financial Disclosure: Dr. Jutkowitz received support from the Agency for Healthcare Research and Quality (1R36HS024165–01).

Publisher Copyright:
© 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society


  • dementia
  • dementia cost
  • family caregiving
  • institutionalization

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