Exploring costs, cost components, and associated factors among people with dementia approaching the end of life: A systematic review
Open accessAbstract
Introduction: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs. Methods: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full‐text articles. We used the Evers' Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies. Results: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out‐of‐pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs. Discussion: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed.
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A systematic review of end-of-life costs for individuals with dementia reported that costs were especially high during the last month of life, even compared with monthly costs over the last year of life.
“A recent systematic review of end‐of‐life costs for individuals with dementia reported that costs were especially high during the last month of life, even compared with monthly costs over the last year of life. 868”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [868]
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- Authors
- Leniz, J., Yi, D., Yorganci, E., Williamson, L. E., Suji, T., Cripps, R., Higginson, I. J., & Sleeman, K. E.
- Affiliations
- Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation King's College London London UK
- King's College London (GB)
- ORCID
- Venue
- Alzheimer's & Dementia: Translational Research & Clinical Interventions
- Publisher
- Wiley
- Published
- 2021-01
- Volume
- 7
- Issue
- 1
- Pages
- e12198-e12198
- ISSN
- 2352-8737 (ISSN-L)
- PMC
- PMC8438684
- OpenAlex
- W3199724134
- Cited by
- 24
- References
- 48
- Citations by year
- 2026: 3 · 2025: 6 · 2024: 6 · 2023: 4 · 2022: 4 · 2021: 1
- FWCI
- 0.67
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Alzheimer s & Dementia Translational Research & Clinical Interventions (publishedVersion, cc-by-nc-nd)
- Europe PMC (PubMed Central) (publishedVersion, other-oa)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- Research Portal (King's College London) (publishedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- King's College Hospital NHS Foundation Trust
- National Institute for Health and Care Research (CL-2010-17-009, CS-2015-15-005, NF-SI-0611-10209, 12/130/47)
- Academy of Medical Sciences (AMS‐SGCL10‐Sleeman)
- National Institute for Health Research Applied Research Collaboration South London
- Topics
- 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
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- dementia, end-of-life care, cost of care, cost components, proximity to death, informal care, out-of-pocket costs, direct medical costs, socioeconomic factors, comorbidities, cognitive impairment, sex differences, racial disparities
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