ArticleHealth affairs (Project Hope)2019
Spousal Caregivers Are Caregiving Alone In The Last Years Of Life.
Article in Health affairs (Project Hope), 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06635876 (Piloting an Online Emergency Preparedness Toolkit for Caregivers Preparing for Their Own Health Care Emergency), which is not on this map. Cited by 57 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Piloting an Online Emergency Preparedness Toolkit for Caregivers Preparing for Their Own Health Care Emergency
Who cites it
57 citing papers in PubMed, 1 synthesis or guideline pooled it, 113 citations in OpenAlex.
- Clinicians for CARE: A Systematic Review and Meta-Analysis of Interventions to Support Caregivers of Patients With Heart Disease.Journal of the American Heart Association · 2021Pooled it
- Exploring the experiences and needs in everyday life of spouse carers of persons with dementia.International journal of qualitative studies on health and well-being · 2026Article
- Disparities in hospice enrollment timing and end-of-life care intensity across non-cancer diagnoses: a 10-year hospital-based cohort study.Annals of medicine · 2026Article
- Caregivers with poorer health are less likely to engage in an intervention to prepare for their own health care emergency.The Gerontologist · 2026Article
- The Impact of Dementia Caregiving on the Health of the Spousal Caregiver.Medicina (Kaunas, Lithuania) · 2026Review
- Invisible Pillars With Hidden Burdens: A Scoping Review on the Challenges of Informal Caregivers for Older Adults in Home-Based Palliative Care.Journal of palliative care · 2026Article
- State Medicaid spending for long-term services and supports (LTSS) and the self-reported health of spousal caregivers of community-dwelling older adults with dementia.Aging and health research · 2026Article
- Supporting Family Caregivers' Clinical Communication Skills: Adapting a Cancer Caregiver Communication Model for Dementia Caregiving.International journal of environmental research and public health · 2026Article
- Caregivers serving as confidants: relationship correlates and well-being by care-recipients' dementia status.The journals of gerontology. Series B, Psychological sciences and social sciences · 2026Article
- Socio-economic inequalities in unmet long-term care needs in Spain.European journal of ageing · 2026Article
- Neighborhood social cohesion and psychological distress among caregiving spouses with or without a nearby social support network.Frontiers in public health · 2026Article
- Complex atypical caregiving: navigating the margins of unique caregiver roles and burdens.Frontiers in psychology · 2026Article
- The association between caregiving for disabled spouses and depressive symptoms among middle-aged and older adults in China.BMC psychology · 2025Article
- Niece and nephew dementia caregivers: family relationships and care dynamics.The Gerontologist · 2025Article
- Adverse Childhood Experiences Reported by Spouses of Persons Living With Dementia and Their Association With Care-Related Strain.Journal of gerontological nursing · 2025Article
- Caregivers' knowledge, attitudes and behaviour towards the daily oral care of bedridden patients in Chiang Rai, Thailand.Gerodontology · 2025Article
- Caregiving burdens of task time and task difficulty among paid and unpaid caregivers of persons living with dementia.Frontiers in public health · 2025Article
- Medicare expenditures among spouses of persons with dementia.Journal of the American Geriatrics Society · 2024Article
- Mortality and Function After Widowhood Among Older Adults With Dementia, Cancer, or Organ Failure.JAMA network open · 2024Article
- The effect of long-term care insurance on women's health outcomes in China: evidence from a disability inclusion action.BMC public health · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
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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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.