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Experiences of Formal and Informal Support Among Adult-Daughter Caregivers of People With Dementia in Sweden: A Qualitative Study
CIRCLE - Complex Intervention Research in Health and Care, Department of Women´s and Children´s Health, Uppsala University, Uppsala.
CIRCLE - Complex Intervention Research in Health and Care, Department of Women´s and Children´s Health, Uppsala University, Uppsala.
Clinical Education, Development and Research (CEDAR), Psychology, University of Exeter, Devon, UK, GB..
Centre for Gender Research, Uppsala University, Uppsala.
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2026 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 25, no 4, p. 801-823Article in journal (Refereed) Published
Abstract [en]

People with dementia are living longer in the community and reliance on informal caregivers is increasing. Few studies have focused on the experiences of adult-daughter caregivers (daughter caregivers), who may have increased risk of depression and lack of support compared with spousal caregivers. We aimed to explore the experiences of accessing and receiving formal and informal support among daughter caregivers of people living with dementia in Sweden. We conducted semi-structured interviews with 23 daughter caregivers. A topic guide was used to explore experiences of accessing and receiving formal and informal support in their caregiving role. We analyzed the interviews using reflexive thematic analysis. We generated two themes: Types of support, and Mismatched support. The first theme, with subthemes Sharing experiences, Professional support, and Getting some relief, captured the caregiver support context with different types of support accessed and received by daughter caregivers, with peer support and informational support identified as important components of caregiver support. The second theme, with subthemes Lack of tailoring to daughter caregivers' needs and Difficulties navigating support, captured how daughter caregivers perceived existing support to be inadequate to meet their specific needs and the complex structure of available support limited their opportunities to access support. Daughter caregivers experience a mismatch between the type of support accessed and received and their specific support needs. Support better tailored to the needs and situation of daughter caregivers of people with dementia in Sweden is required. The potential of utilizing peer support for caregivers warrants further research.

Place, publisher, year, edition, pages
2026. Vol. 25, no 4, p. 801-823
Keywords [en]
adult-daughter, caregiver, dementia, formal, informal, support
National Category
Nursing
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URN: urn:nbn:se:du-51355DOI: 10.1177/14713012251376774ISI: 001566513000001PubMedID: 40921072Scopus ID: 2-s2.0-105016878468OAI: oai:DiVA.org:du-51355DiVA, id: diva2:2000846
Available from: 2025-09-25 Created: 2025-09-25 Last updated: 2026-04-15Bibliographically approved

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Åberg, Anna Cristina

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CiteExportLink to record
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