Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers
Open accessAbstract
Older adults living with dementia are at risk for more complex health care transitions than individuals without this condition, non-impaired individuals. Poor quality care transitions have resulted in a growing body of qualitative empirical literature that to date has not been synthesized. We conducted a systematic literature review by applying a meta-ethnography approach to answer the following question: How do older adults with dementia and/or their caregivers experience and perceive healthcare transition: Screening resulted in a total of 18 studies that met inclusion criteria. Our analysis revealed the following three categories associated with the health care transition: (1) Feelings associated with the healthcare transition; (2) processes associated with the healthcare transition; and (3) evaluating the quality of care associated with the health care transition. Each category is represented by several themes that together illustrate an interconnected and layered experience. The health care transition, often triggered by caregivers reaching a "tipping point," is manifested by a variety of feelings, while simultaneously caregivers report managing abrupt transition plans and maintaining vigilance over care being provided to their family member. Future practice and research opportunities should be more inclusive of persons with dementia and should establish ways of better supporting caregivers through needs assessments, addressing feelings of grief, ongoing communication with the care team, and integrating more personalized knowledge at points of transition.
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Care fragmentation can manifest as poor information transfer between providers, inadequate discharge planning, insufficient support for family caregivers, and lack of follow-up care.
“This fragmentation can manifest as poor information transfer between providers, inadequate discharge planning, insufficient support for family caregivers, and lack of follow-up care (Ashbourne et al., 2021; Saragosa et al., 2022).”
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 Saragosa et al., 2022
The Discussion (page unavailable) describes ineffective communication, poor coordination, impromptu discharge planning, and caregivers left to coordinate care after discharge. The Findings > Synthesis findings (page unavailable) also report fragmented information sharing and gaps in caregiver support. These passages do not establish lack of follow-up care as a distinct problem. (LLM, conf=0.85)
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References 78 · Cited by 21
- Authors
- Saragosa, M., Jeffs, L., Okrainec, K., & Kuluski, K.
- Affiliations
- University of Toronto (CA)
- University Health Network (CA)
- Corresponding author
- Saragosa, Marianne
- Venue
- Dementia
- Publisher
- SAGE Publications
- Published
- 2021-08-02
- Volume
- 21
- Issue
- 1
- Pages
- 153-180
- ISSN
- 1471-3012 (ISSN-L)
- 1741-2684
- PMC
- PMC8721620
- OpenAlex
- W3188969364
- Cited by
- 21
- References
- 78
- Citations by year
- 2026: 3 · 2025: 5 · 2024: 4 · 2023: 4 · 2022: 5
- FWCI
- 3.39
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Dementia (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- care transitions, caregivers, older adults, caregiver experiences, grief, quality of care, family caregiving, person-centred care
- MeSH terms
- Aged, Anthropology, Cultural, Dementia, Humans, Patient Transfer, Caregivers, Transition to Adult Care
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