ArticleThe American journal of hospice & palliative care2024
Knowledge Gaps in End-Of-Life Family Caregiving for Persons Living With Dementia: A Study of Hospice Clinician Perspectives.
Article in The American journal of hospice & palliative care, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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.
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Who cites it
3 citing papers in PubMed, 6 citations in OpenAlex.
- "They're exhausted": Hospice Staff Views on Caring for Patients and Families Impacted By Dementia.Journal of pain and symptom management · 2026Article
- 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
- Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians.PEC innovation · 2023Article
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 1 country.
Funding
Abstract
introductionMore than 35% of hospice care recipients 65 and older have a dementia diagnosis. Yet family care partners of persons living with dementia report feeling unprepared to address their hospice recipient's changing needs nearing end of life. Hospice clinicians may have unique insight into the knowledge needs of family care partners and strategies for end-of-life dementia caregiving.
methodsSemi-structured interviews were conducted with 18 hospice physicians, nurse practitioners, nurses, and social workers. Interview transcripts were deductively analyzed using thematic analysis to examine clinicians' perspectives on gaps and strategies related to family care partner knowledge about end-of-life dementia caregiving.
resultsWe identified 3 themes related to gaps in family care partners' knowledge: dementia is a progressive, fatal disease; end-of-life symptoms and symptom management in persons living with advanced dementia; and understanding hospice goals and guidelines. Three themes related to clinicians' strategies to increase knowledge included: providing education; teaching strategies to facilitate coping and preparedness for end-of-life care; and communicating with empathy. DISCUSSION: Clinicians perceive gaps in knowledge specific to dementia and end of life among family care partners. These gaps include a lack of understanding of Alzheimer's symptom progression and strategies to manage common symptoms. Recommendations for approaches to reduce knowledge gaps include providing education and strategies delivered with empathy toward the family care partner experience.
conclusionClinicians who work with persons living with dementia receiving hospice care have valuable insights regarding family care partners' gaps in knowledge. Implications on the training and preparation of hospice clinicians working with this care partner population are discussed.
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