ArticleJournal of pain and symptom management2019
Does Caregiving Strain Increase as Patients With and Without Dementia Approach the End of Life?
Article in Journal of pain and symptom management, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers, 1 of them a synthesis that pooled it.
What it found
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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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
38 citing papers in PubMed, 1 synthesis or guideline pooled it, 67 citations in OpenAlex.
- Pooled it
- The Effect of the Care Ecosystem Collaborative Care Model on End-of-Life Outcomes for People With Dementia and Their Caregivers.The American journal of hospice & palliative care · 2026Trial
- "They're exhausted": Hospice Staff Views on Caring for Patients and Families Impacted By Dementia.Journal of pain and symptom management · 2026Article
- Nurse-Led Telephonic Care Following Emergency Department Visits for Persons Living With Dementia and Their Care Partners: A Program Description.Journal of the American Geriatrics Society · 2026Article
- Caregiving Activities and Activity-Limiting Pain Among African American Caregivers.Journal of pain and symptom management · 2026Article
- Our Patients Want to Die at Home. Are They Prepared for It?Journal of the American Geriatrics Society · 2025Article
- Developing and Testing a Two-Part Intervention: Enhancing Dementia Instruction and Tool in Home Hospice Care.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2025Article
- Compounding strain: The impact of caregiver strain on health outcomes in older adults with new cancer diagnoses.Journal of geriatric oncology · 2025Article
- Information and education for informal dementia caregivers: the Age-it project.Frontiers in public health · 2025Article
- Home Health Care and Hospice Use Among Medicare Beneficiaries With and Without a Diagnosis of Dementia.Journal of palliative medicine · 2024Article
- Knowledge Gaps in End-Of-Life Family Caregiving for Persons Living With Dementia: A Study of Hospice Clinician Perspectives.The American journal of hospice & palliative care · 2024Article
- Dementia caregiver burdens predict overnight hospitalization and hospice utilization.Palliative & supportive care · 2023Article
- Article
- "Each Day We Lose a Little More": Visual Depictions of Family Caregiving for Persons with Dementia.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2023Article
- Challenges and strategies among family care partners of community-dwelling persons with dementia nearing end of life.Journal of the American Geriatrics Society · 2023Article
- Validation of a Measure of Role Overload and Gains for End-of-Life Dementia Caregivers.The journals of gerontology. Series B, Psychological sciences and social sciences · 2023Article
- A Situation-Specific Theory of End-of-Life Communication in Nursing Homes.International journal of environmental research and public health · 2023Article
- A national study of disenrollment from hospice among people with dementia.Journal of the American Geriatrics Society · 2022Observational
- Hospice Improves Care Quality For Older Adults With Dementia In Their Last Month Of Life.Health affairs (Project Hope) · 2022Article
- Postacute care outcomes in home health or skilled nursing facilities in patients with a diagnosis of dementia.Health services research · 2022Article
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
contextFamily caregivers play critical and demanding roles in the care of persons with dementia through the end of life.
objectivesThe objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers.
methodsParticipants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0-9, using a cut point of 5 to define "high" strain) after comprehensively adjusting for other older adult and caregiver factors.
resultsThe prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non-end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10-3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain.
conclusionIncreased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.
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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.