Burdensome transitions at the end of life among long-term care residents with dementia
Abstract
Objectives The purpose of the study was to examine the frequency of burdensome care transitions at the end of life, the difference between different types of residential care facilities, and the changes occurring between 2002 and 2008.Design A nationwide, register-based retrospective study.Setting Residential care facilities offering long-term care, including traditional nursing homes, sheltered housing with 24-hour assistance, and long-term care facilities specialized in care for people with dementia.Study group All people in Finland who died at the age of 70 or older, had dementia, and were in residential care during their last months of life.Main outcome measures Three types of potentially burdensome care transition: (1) any transition to another care facility in the last 3 days of life; (2) a lack of continuity with respect to a residential care facility before and after hospitalization in the last 90 days of life; (3) multiple hospitalizations (more than 2) in the last 90 days of life. The 3 types were studied separately and as a whole.Results One-tenth (9.5%) had burdensome care transitions. Multiple hospitalizations in the last 90 days were the most frequent, followed by any transitions in the last 3 days of life. The frequency varied between residents who lived in different baseline care facilities being higher in sheltered housing and long-term specialist care for people with dementia than in traditional nursing homes. During the study years, the number of transitions fluctuated but showed a slight decrease since 2005.Conclusions The ongoing change in long-term care from institutional care to housing services causes major challenges to the continuity of end-of-life care. To guarantee good quality during the last days of life for people with dementia, the underlying reasons behind transitions at the end of life should be investigated more thoroughly.
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When transitions were facilitated in ways that respected cultural values and helped families navigate stigma, caregivers experienced more acceptance and less distress.
“Studies found that when transitions were facilitated in ways that respected cultural values and helped families navigate stigma, caregivers experienced more acceptance and less distress (Aaltonen et al., 2014; Hanson et al., 2019; Hanssen 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 Aaltonen et al., 2014
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Health care transitions for persons living with dementia and their caregivers
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- Authors
- Aaltonen, M., Raitanen, J., Forma, L., Pulkki, J., Rissanen, P., & Jylhä, M.
- Affiliations
- Tampere University (FI)
- Corresponding author
- Aaltonen, Mari
- Venue
- Journal of the American Medical Directors Association
- Publisher
- Elsevier BV
- Published
- 2014-09
- Volume
- 15
- Issue
- 9
- Pages
- 643-648
- ISSN
- 1525-8610 (ISSN-L)
- OpenAlex
- W2001935466
- Cited by
- 60
- References
- 28
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 1 · 2023: 4 · 2022: 7 · 2021: 8 · 2020: 10 · 2019: 6 · 2018: 4 · 2017: 7 · 2016: 6 · 2015: 2 · 2014: 1
- FWCI
- 5.28
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of the American Medical Directors Association (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Brown University
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
- Keywords
- end-of-life care, dementia, long-term care, care transitions, nursing homes, sheltered housing, dementia care facilities, continuity of care, hospitalization, last days of life, institutional care, Finland
- MeSH terms
- Aged, Aged, 80 and over, Continuity of Patient Care, Dementia, Female, Finland, Hospitalization, Humans, Length of Stay, Long-Term Care, Male, Patient Transfer, Registries, Retrospective Studies, Terminal Care
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