ArticleJournal of the American Geriatrics Society2023
Challenges and strategies among family care partners of community-dwelling persons with dementia nearing end of life.
Article in Journal of the American Geriatrics Society, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 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
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 12 citations in OpenAlex.
- Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence.Palliative medicine · 2025Pooled it
- Randomized clinical trial of the individualized coordination and empowerment for care partners of persons with dementia (ICECaP) intervention: impact on preparedness for caregiving.Aging clinical and experimental research · 2025Trial
- Meaning and Influencing Factors of a Good Death for Community-Dwelling Individuals With Dementia: An Integrative Review.International journal of older people nursing · 2026Review
- Views on dementia among informal caregivers of people with dementia: A scoping review and thematic analysis of qualitative studies.Journal of Alzheimer's disease : JAD · 2026Article
- Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach.Palliative care and social practice · 2026Article
- Palliative Home Care Based on Clinically Relevant Scientific Measures: A Cross-Sectional Study.The American journal of hospice & palliative care · 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
- Assessment of burden and needs of family caregivers for the elderly, a scoping review.Frontiers in aging · 2025Review
- 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
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundA growing number of persons living with dementia (PLwD) die at home with hospice care. However, there is limited information describing the needs of dying, community-dwelling persons with dementia and their family care partners (FCPs). Understanding the range of challenges faced by these FCPs is requisite to developing resources and refining support infrastructure. The current study identifies caregiving challenges unique to this population and strategies FCPs use to address those challenges.
methodsSemi-structured interviews were conducted with 40 current or recently bereaved FCPs of home hospice patients living with dementia, recruited from geriatrics clinics and a hospice agency in the New York metropolitan area. A thematic analysis guided by deductive and inductive approaches was used to code interview transcripts, identify broader conceptual categories, and search for themes.
resultsThree themes were identified related to challenges faced by FCPs: (1) managing emotions and reacting to behaviors associated with advanced dementia; (2) lack of knowledge and adequate information related to dementia: disease progression and caregiving skills; and (3) maintaining FCP well-being: self-care and caregiver burden. Three themes were identified that describe strategies FCPs of PLwD employ to cope with end-of-life caregiving demands: (1) accepting help from professional caregivers and hospice support services; (2) getting knowledge and information about dementia; and (3) pragmatic approaches and acceptance of signs and symptoms of disease progression.
conclusionsFCPs of PLwD near the end of life (EOL) face caregiving challenges unique to dementia and dying. While FCPs are resourceful in identifying novel strategies for managing burden and caregiving responsibilities, our results point to gaps in the current support infrastructure for this population at the EOL. Findings also identify areas of need for care partners navigating end-of-life issues.
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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.