Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta‐ethnographic study
Abstract
Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers' experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers' experiences, were included. The family caregivers' described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers' unique knowledge of their relatives' previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.
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Support both from other family members and healthcare professionals was sought and valued, but many carers found difficulty in negotiating the complicated healthcare system.
“Support both from other family members and healthcare professionals was sought and valued, but consistent with other research reports, many carers found difficulty in negotiating the complicated healthcare system [12].”
From How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study (2016) · cites this paper as [12]
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“Support both from other family members and healthcare professionals was sought and valued, but consistent with other research reports, many carers found difficulty in negotiating the complicated healthcare system [12].”
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Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers
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- Authors
- Graneheim, U. H., Johansson, A., & Lindgren, B.
- Affiliations
- Umeå University (SE)
- Venue
- Scandinavian Journal of Caring Sciences
- Publisher
- Wiley
- Published
- 2013-04-12
- Volume
- 28
- Issue
- 2
- Pages
- 215-224
- ISSN
- 0283-9318 (ISSN-L)
- 1471-6712
- OpenAlex
- W1966666864
- Cited by
- 151
- References
- 1
- Citations by year
- 2026: 5 · 2025: 9 · 2024: 7 · 2023: 13 · 2022: 15 · 2021: 20 · 2020: 18 · 2019: 16 · 2018: 11 · 2017: 12 · 2016: 10 · 2015: 5 · 2014: 8 · 2013: 1
- FWCI
- 14.41
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Scandinavian Journal of Caring Sciences (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- family caregivers, dementia, nursing home admission, caregiver experiences, guilt and shame, loss, caregiver role change, caregiver partnership, care planning, clinical supervision
- MeSH terms
- Anthropology, Cultural, Dementia, Family, Humans, Nursing Homes, Caregivers
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