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Dying With Dementia

Caregiver Observations of Their Family Members’ Physical Decline and Behavioral or Psychological Changes During Their Last Days

Bibliographic Data

ID13627666
AuthorsCynthia Hovland (0000-0001-7338-3952, Cleveland State University), Christopher A Mallett (0000-0002-4881-9379, Cleveland State University, corresponding author)
Year2020
Volume84
Issue2
Pages653-672
Publication date2020-02-19
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueOMEGA - Journal of Death and Dying (JOURNAL)
Journal identifiersISSN: 0030-2228 • E-ISSN: 1541-3764
PublisherSAGE Publishing (PUBLISHER • US)
DOI10.1177/0030222820906684
PMID32075522
OpenAlexW3008557649
LanguageEN
References cited29

Family caregivers of older persons with dementia have significant challenges across many domains. These reported problems encountered over their caregiving time are for many reasons, but what makes the caretaking difficult is complicated by both the unknown nature of the dementia disease and the dying trajectory. While there are studies, primarily from health-care professionals, of this dying process and the last few weeks of life for older persons with dementia, much less is known directly from the family caregivers' perspectives and experiences. This qualitative study of 30 caregivers of family members aged 65 years and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period and directed content analysis to understand the data. The study asked what physical, behavioral, and psychological changes they observed and experienced during their family members' last weeks of life. Three primary themes were identified around behavioral and psychological changes: (a) they become different people , (b) did not recognize caregiver , and (c) wandering and getting lost ; and two primary themes identified physical decline: (a) system started shutting down and (b) drastically diminished self-sufficiency . Implications for families and professionals are reviewed and discussed

Dementia · Disease · Family caregivers · Psychiatry · Qualitative research · Clinical Psychology · Dementia and Cognitive Impairment Research · Geriatric Care and Nursing Homes · Medicine · Palliative Care and End-of-Life Issues · Psychology · Gerontology

  • Trajectories of Disability in the Last Year of Life

    Thomas M Gill, Evelyne A Gahbauer et al.•New England Journal of Medicine•2010

  • Directed qualitative content analysis

    Open Access•Abdolghader Assarroudi, Fatemeh Heshmati Nabavi et al.•Journal of Research in Nursing•2018

  • Planning End-of-Life Care for Patients with Dementia

    Open Access•Charles E Gessert, Sarah Forbe et al.•OMEGA - Journal of Death and Dying•2001

  • Three Approaches to Qualitative Content Analysis

    Open Access•Hsiu-Fang Hsieh, Sarah E Shannon•Qualitative Health Research•2005

Citation velocityhistorical
Highly citedNo

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