Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

Ornstein, Katherine A.; Wolff, Jennifer L.; Bollens-Lund, Evan; Rahman, Omari-Khalid; Kelley, Amy S.

doi:10.1377/hlthaff.2019.00087

Cited by 123Palliative Care and End-of-Life IssuesNursing care and researchGrief, Bereavement, and Mental Health

Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

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Ornstein, Katherine A., Wolff, Jennifer L., Bollens-Lund, Evan, Rahman, Omari-Khalid, Kelley, Amy S.·2019·Health Affairs

DOI 10.1377/hlthaff.2019.00087PMC PMC6760240

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Abstract

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers-that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's self-care or household activities-would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.

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Among caregivers of spouses with dementia who are at the end of life, close to half provide care without help from other family or friends.
“Among caregivers of spouses with dementia who are at the end of life, close to half provide care without the help of other family or friends.403”
From 2023 Alzheimer's disease facts and figures (2023) · cites this paper as [403]

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END-OF-LIFE SPOUSAL CAREGIVERS: THE IMPACT OF CAREGIVING ALONE ON BEREAVEMENT OUTCOMES
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Authors: Ornstein, K. A., Wolff, J. L., Bollens-Lund, E., Rahman, O.-K., & Kelley, A. S.
Affiliations: Icahn School of Medicine at Mount Sinai (US)
Johns Hopkins University (US)
Evan Bollens-Lund is an analyst in the Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai.
ORCID: Ornstein, Katherine A.
Wolff, Jennifer L.
Kelley, Amy S.
Venue: Health Affairs
Publisher: Health Affairs Publishing, LLC
Published: 2019-06
Volume: 38
Issue: 6
Pages: 964-972
ISSN: 0278-2715 (ISSN-L)
1544-5208
DOI: 10.1377/hlthaff.2019.00087
PMC: PMC6760240
OpenAlex: W2948099501
Cited by: 123
References: 54
Citations by year: 2026: 15 · 2025: 18 · 2024: 20 · 2023: 20 · 2022: 25 · 2021: 15 · 2020: 9 · 2018: 1
FWCI: 11.28
Type: journal article
Language: en
Open access: hybrid
doi.org
Licence: cc-by
Locations: Health Affairs (publishedVersion, cc-by)
PubMed (publishedVersion)
PubMed Central (acceptedVersion)
Funders: National Institute on Aging (R01AG060967, R01AG047859, K01AG047923, R01AG054540, U01AG009740)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Health Sciences › Health Professions › Pharmacy › Nursing care and research
Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
Keywords: spousal caregivers, bereavement, depression, caregiver support, dementia caregiving, disability, older adults, family caregiving, caregiver isolation, serious illness care
MeSH terms: Activities of Daily Living, Aged, Bereavement, Depression, Female, Humans, Interviews as Topic, Male, Self Care, Social Support, Caregivers, Spouses

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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

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