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Cited by 12Dementia and Cognitive Impairment ResearchGeriatric Care and Nursing HomesFamily Caregiving in Mental Illness

The DOI matches its Crossref record; 51 of the 51 references it cites were found in a registry or an index.

Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth

Walmsley, Bruce D, McCormack, Lynne·2021·Dementia
DOI 10.1177/1471301220970784
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Abstract

Background and Objectives: Few studies explore both negative and positive perspectives of family members who relinquish home care of a family member with dementia for systemic aged care. Research Design and Methods: This phenomenological study sought the ‘lived’ experience of relinquishing the role of home carer for a family member with mild to severe dementia to others within care home settings, by seeking to understand the impact of aged care on family members’ psychological well-being. Using semi-structured interviews, positive and negative subjective interpretations from 17 families (27 individuals) provided data for analysis, following the protocols of interpretative phenomenological analysis. Results: One superordinate theme, mistrust/integrity, overarched oscillation between mistrust of the aged care system and a struggle for personal integrity in caring for these participants. Two sub-themes emerged: intrinsic trauma and extrinsic trauma. Intrinsic trauma explained feelings of helplessness and guilt, and internally directed responses that triggered a retreat into submission ultimately reducing the participant’s role in advocacy. Extrinsic trauma represented externally directed responses such as anger and frustration, where family members became more engaged and watchful and recognised a need for vigilance and advocacy. Paradoxically oscillating between these personal struggles, participants exhibited growth, a third theme that defined assertive/advocacy utilised to nurture hope, gratitude, courage and change. Discussion and Implications: Family members experienced complex distress as they relinquished home care to others within systemic aged care for a member with dementia. By developing adaptive responses as appropriate, for example, advocating for their family member or accepting compliance with treatment, collaborative care between family and staff created better outcomes for the family member with dementia.

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Citations

Cites

Show all 51 references

Research works printed but not linked: 11

  1. Blaikie N., 2000, Designing social research
  2. Gadamer H., 1983, Reason in the age of science, 88
  3. Heidegger M., 1927, Being and time
  4. Lepore S., 2006, Handbook of posttraumatic growth: Research and practice, 24
  5. McLean A., 2007, Alzheimer’s Care Today, 8, 360
  6. 10.1037/0003-066X.55.1.68 · DOI · Paper page
  7. Sabat S. R., 1994, Philosophy, Psychiatry, & Psychology, 1, 145
  8. Smith J. A., 2004, Qualitative Research in Psychology, 1, 39
  9. Smith J., 2009, Interpretive phenomenological analysis. Theory, method and Research
  10. Waligora KJ, 2019, The Gerontologist, 59, e565
  11. Yardley L., 2008, Qualitative Psychology: A practical guide to research methods, 53

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Metadata

Authors
Walmsley, B. D., & McCormack, L.
Affiliations
  • UNSW Sydney (AU)
  • University of Newcastle Australia (AU)
Corresponding author
Walmsley, Bruce D
ORCID
Venue
Dementia
Publisher
SAGE Publications
Published
2020-11-26
Volume
20
Issue
5
Pages
1814-1831
ISSN
  • 1471-3012 (ISSN-L)
  • 1741-2684
DOI
10.1177/1471301220970784
OpenAlex
W3106662489
Cited by
12
References
51
Citations by year
2025: 2 · 2024: 4 · 2023: 2 · 2022: 4
FWCI
1.10
Type
journal article
Language
en
Open access
closed
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • Dementia (publishedVersion)
  • PubMed (publishedVersion)
  • Victoria University Research Repository (Victoria University) (submittedVersion)
  • NOVA (University of Newcastle Australia) (submittedVersion)
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Medicine › Geriatrics and Gerontology › Geriatric Care and Nursing Homes
  • Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords
family caregivers, elderly care, care homes, guilt, traumatic loss, psychological well-being, distrust, personal integrity, advocacy, helplessness, family growth
MeSH terms
Aged, Dementia, Family, Guilt, Home Care Services, Humans, Caregivers

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