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Cited by 221Nursing care and researchIntergenerational Family Dynamics and CaregivingDementia and Cognitive Impairment Research

Family and Other Unpaid Caregivers and Older Adults with and without Dementia and Disability

Open access
Riffin, Catherine, Van Ness, Peter H., Wolff, Jennifer L., Fried, Terri·2017·Journal of the American Geriatrics Society
DOI 10.1111/jgs.14910PMC PMC5555780
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Abstract

Objectives: To estimate the number of caregivers providing assistance to community‐dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health‐related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design: Nationally representative surveys of caregivers and older adults in the United States. Setting: 2011 National Health and Aging Trends Study and National Study of Caregiving. Participants: Community‐dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self‐care, household activities, transportation, or medical tasks. Measurements: Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Results: Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living–related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Conclusion: Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health‐related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk.

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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 [411]

    The Results section (Caregiver and Care Recipient Characteristics; page unavailable) says adult children were the largest group of caregivers across the study’s groups, which included caregivers of people with dementia. It does not say that more than half of caregivers in the dementia groups cared for a parent, or report that figure specifically for primary caregivers. (LLM, conf=0.82)

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Cites

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Research works printed but not linked: 1

  1. [9]Revenson TA Griva K Luszczynska A Interventions to support caregivers Caregiving in the illness context Basingstoke Palgrave Macmillan 2016

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Authors
Riffin, C., Van Ness, P. H., Wolff, J. L., & Fried, T.
Affiliations
  • Yale University (US)
  • Department of Internal Medicine School of Medicine Yale University New Haven Connecticut
  • Johns Hopkins University (US)
Corresponding author
Riffin, Catherine
ORCID
Venue
Journal of the American Geriatrics Society
Publisher
Wiley
Published
2017-04-20
Volume
65
Issue
8
Pages
1821-1828
ISSN
  • 0002-8614 (ISSN-L)
  • 1532-5415
DOI
10.1111/jgs.14910
PMC
PMC5555780
OpenAlex
W2606893923
Cited by
221
References
32
Citations by year
2026: 27 · 2025: 35 · 2024: 27 · 2023: 32 · 2022: 23 · 2021: 27 · 2020: 24 · 2019: 13 · 2018: 11 · 2017: 2
FWCI
29.53
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 (T32AG1934, NIA U01AG032947)
  • Johns Hopkins Bloomberg School of Public Health
Topics
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Social Sciences › Sociology and Political Science › Intergenerational Family Dynamics and Caregiving
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
Keywords
informal caregivers, family caregivers, caregiver burden, older adults, dementia, disability, community-dwelling older adults, activities of daily living, instrumental activities of daily living
MeSH terms
Activities of Daily Living, Adaptation, Psychological, Aged, 80 and over, Dementia, Female, Persons with Disabilities, Humans, Male, Middle Aged, Surveys and Questionnaires, Self Care, United States, Caregivers, Cost of Illness, Independent Living

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