Challenges and strategies among family care partners of community-dwelling persons with dementia nearing end of life Journal Article


Authors: McDarby, M.; Russell, D.; King, L.; Kozlov, E.; Luth, E. A.
Article Title: Challenges and strategies among family care partners of community-dwelling persons with dementia nearing end of life
Abstract: Background: A 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. Methods: Semi-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. Results: Three 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. Conclusions: FCPs 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. © 2023 The American Geriatrics Society.
Keywords: dementia; end of life; hospice care; caregiver burden; caregiving
Journal Title: Journal of the American Geriatrics Society
Volume: 71
Issue: 6
ISSN: 0002-8614
Publisher: Wiley Blackwell  
Date Published: 2023-06-01
Start Page: 1785
End Page: 1794
Language: English
DOI: 10.1111/jgs.18254
PUBMED: 36740935
PROVIDER: scopus
PMCID: PMC10258160
DOI/URL:
Notes: Article -- MSK Cancer Center Support Grant (P30 CA008748) acknowledged in PDF and PubMed -- Source: Scopus
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  1. Meghan Mcdarby
    29 Mcdarby