Caring for Individuals with Dementia and Cognitive Impairment, Not Dementia: Findings from the Aging, Demographics, and Memory Study
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OBJECTIVES: To compare the characteristics and outcomes of caregivers of adults with dementia with those of caregivers of adults with cognitive impairment, not dementia (CIND). DESIGN: Cross‐sectional. SETTING: In‐home assessment for cognitive impairment and self‐administered caregiving questionnaire. PARTICIPANTS: One hundred sixty‐nine primary family caregivers of participants in the Aging, Demographics, and Memory Study (ADAMS). ADAMS participants were aged 71 and older drawn from the nationally representative Health and Retirement Study. MEASUREMENTS: Neuropsychological testing, neurological examination, clinical assessment, and medical history were used to assign a diagnosis of normal cognition, CIND, or dementia. Caregiving measures included caregiving time, functional limitations, depressive symptoms, physical and emotional strain, caregiving rewards, caregiver health, and demographic characteristics. RESULTS: Dementia caregivers spent approximately 9 hours per day providing care, compared with 4 hours per day for CIND caregivers ( P =.001). Forty‐four percent of dementia caregivers exhibited depressive symptoms, compared with 26.5% of CIND caregivers ( P =.03). Physical and emotional strains were similar in both groups of caregivers. Regardless of the strains, nearly all caregivers reported some benefits from providing care. Behavioral problems ( P =.01) and difficulty with instrumental activities of daily living ( P =.01) in persons with CIND partially explained emotional strain experienced by CIND caregivers. For those with dementia, behavioral problems predicted caregiver emotional strain ( P <.001) and depressive symptoms ( P =.01). CONCLUSION: Although support services are available to dementia caregivers, CIND caregivers also expend considerable time and experience strains. The real caregiver burden of cognitive impairment in the U.S. population may therefore be greatly underestimated if people who have reached the diagnostic threshold for dementia are focused on exclusively.
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Among primary caregivers of people with dementia, more than half care for their parents.
“Among primary caregivers (individuals who indicate having the most responsibility for helping their relatives) of people with dementia, over half take care of their parents.[410][411][412]”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [410]
The Methods > Assessments section defines primary caregivers as family members who said they were most responsible for providing care. The Results section says caregivers were most likely to be the care recipient’s child and that characteristics were similar across the dementia and CIND groups. It does not establish that children made up more than half of primary caregivers of people with dementia. (LLM, conf=0.82)
Experimental — accuracy not yet measuredCaregivers of dementia patients suffer more than other caregivers, with worse mental and physical health, less leisure time, more employment complications, and more family conflict.
“Caregivers of dementia patients in particular suffer more than other CGs–they tend to have worse mental and physical health, less leisure time, more employment complications and more family conflict [2, 3].”
From Baby boomer caregiver and dementia caregiving: findings from the National Study of Caregiving (2015) · cites this paper as [3]
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- Authors
- Fisher, G. G., Franks, M. M., Plassman, B. L., Brown, S. L., Potter, G. G., Llewellyn, D., Rogers, M. A. M., & Langa, K. M.
- Affiliations
- Purdue University West Lafayette (US)
- ORCID
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2011-03
- Volume
- 59
- Issue
- 3
- Pages
- 488-494
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- PMC
- PMC3646395
- OpenAlex
- W1480900123
- Cited by
- 123
- References
- 49
- Citations by year
- 2026: 5 · 2025: 4 · 2024: 6 · 2023: 5 · 2022: 6 · 2021: 8 · 2020: 8 · 2019: 16 · 2018: 5 · 2017: 12 · 2016: 8 · 2015: 12 · 2014: 13 · 2013: 9 · 2012: 4
- FWCI
- 5.91
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Deep Blue (University of Michigan) (submittedVersion)
- Funders
- National Institute on Aging (R01AG030155, U01AG009740, R01AG027010)
- National Institute of Mental Health (K23MH087741)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Keywords
- dementia, family caregivers, caregiver burden, depressive symptoms, caregiving time, behavioral problems, instrumental activities of daily living, older adults
- MeSH terms
- Activities of Daily Living, Aged, Analysis of Variance, Cognition Disorders, Cross-Sectional Studies, Dementia, Female, Humans, Male, Neuropsychological Tests, Time Factors, United States, Linear Models, Caregivers
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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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