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
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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“Our findings contributes evidence that confirms other research on advocacy [47].”
From The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping (2023) · cites this paper as [47]
Citations
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Cited by
Sorted by citations
Saragosa, M., Nizzer, S., McKay, S., & Kuluski, K. (2023) · BMC Health Services Research · doi:10.1186/s12913-023-09899-2 · Cited by 37
“Our findings contributes evidence that confirms other research on advocacy [47].”
ResultMeaning-making of dementia caregiving: A systematic review of qualitative studies.
Chen, S., Lou, V., Leung, R., & Yu, D. (2024) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2024.104848 · Cited by 18
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Family Caregivers as Employers of Migrant Live-In Care Workers: Experiences and Policy Implications
Arieli, D., & Hochwald, I. H. (2023) · Journal of Aging & Social Policy · doi:10.1080/08959420.2023.2238535 · Cited by 6
Relationship between anxiety and fatigue in dementia family caregivers: hope as a mediator
Jiang, J.-L., Chang, S.-L., Wang, K.-C., & Ma, Y.-C. (2025) · BMC Nursing · doi:10.1186/s12912-025-02853-z · Cited by 5
Metadata
- Authors
- Walmsley, B. D., & McCormack, L.
- Affiliations
- UNSW Sydney (AU)
- University of Newcastle Australia (AU)
- Corresponding author
- Walmsley, Bruce D
- Venue
- Dementia
- Publisher
- SAGE Publications
- Published
- 2020-11-26
- Volume
- 20
- Issue
- 5
- Pages
- 1814-1831
- ISSN
- 1471-3012 (ISSN-L)
- 1741-2684
- 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
- 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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- Walmsley, B. D., & McCormack, L. (2021). Dementia families: Relinquishing home care to aged care services: Guilt, traumatic loss and growth. Dementia. https://doi.org/10.1177/1471301220970784
