Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes
Abstract
Objectives: Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home.Method: Qualitative thematic and conversational analysis were used: themes were co-created and modes of speech and syntactical patterns analysed to expose discourses related to caregiving after placement in 24-hour care homes.Results: Four main themes were co-constructed from the data analysis: living with loss, relinquishing, redefining the caregiving role, and rediscovering and recreating a new self.Discussion: Caregiving continues after placement of family members with dementia in 24-hour care homes. Caregivers are at-risk group and require ongoing support throughout the caregiving journey. Study participants reported that navigation skills such as relationship building, communication, and advocacy were particularly salient to the post-placement period, when navigating the complex health care environment was a significant obstacle. Ultimately, findings from these focus groups will be used to inform an online intervention to support caregivers of a family member with dementia residing in a 24-hour care home.
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Caregivers described that profit-driven care models, insurance limitations, or lack of subsidized services restricted choices and increased out-of-pocket costs during critical transitions.
“In several studies, caregivers described how profit-driven care models, insurance limitations, or lack of subsidized services restricted choices and increased out-of-pocket costs during critical transitions (Armstrong et al., 2020; Cottrell et al., 2020; Fitzpatrick & Grace, 2019; Freedman et al., 2022; Gilmore-Bykovskyi et al., 2021; Gresham et al., 2018; Hanssen & Tran, 2019; Holton et al., 2023”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Cottrell et al., 2020
Caregivers' involvement was driven by a desire to advocate for loved ones, oversee care plans, and preserve personal routines.
“This involvement was driven by a desire to advocate for loved ones, oversee care plans, and preserve personal routines (Cottrell et al., 2020; Cronfalk et al., 2018).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Cottrell et al., 2020
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- Authors
- Cottrell, L., Duggleby, W., Ploeg, J., McAiney, C., Peacock, S., Ghosh, S., Holroyd-Leduc, J. M., Nekolaichuk, C., Forbes, D., Paragg, J., & Swindle, J.
- Affiliations
- University of Alberta (CA)
- McMaster University (CA)
- University of Saskatchewan (CA)
- University of Calgary (CA)
- Corresponding author
- Cottrell, L.
- ORCID
- Venue
- Aging & Mental Health
- Publisher
- Informa UK Limited
- Published
- 2018-12-27
- Volume
- 24
- Issue
- 2
- Pages
- 227-232
- ISSN
- 1360-7863 (ISSN-L)
- 1364-6915
- OpenAlex
- W2907848839
- Cited by
- 26
- References
- 30
- Citations by year
- 2026: 3 · 2025: 5 · 2024: 4 · 2023: 4 · 2022: 2 · 2021: 4 · 2020: 3 · 2018: 1
- FWCI
- 1.57
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Aging & Mental Health (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Canadian Frailty Network
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- family caregivers, dementia, caregiver transition, caregiver needs, loss, relationship building, communication, advocacy, online intervention, long-term care
- MeSH terms
- Transitional Care, Adaptation, Psychological, Aged, Communication, Dementia, Family, Female, Home Nursing, Homes for the Aged, Humans, Male, Nursing Homes, Social Support, Stress, Psychological, Caregivers, Focus Groups, Qualitative Research
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