Implementing and sustaining dementia care coordinators across integrated care systems: a realist evaluation
Open accessAbstract
BACKGROUND: Globally, dementia care is under strain. Rising rates across ageing populations, coupled with overstretched health and care systems, mean that people living with dementia and their carers are missing out on crucial support. Addressing dementia care is a key priority for the UK government. This has led to a period of care transformation, including the implementation of new dementia support services across integrated care systems (ICS). However, little is known about how these new services work. This evaluation identifies how a dementia care coordinator service, implemented in the largest ICS in England, works for people living with dementia, their carers and the workforce. METHODS: A realist evaluation using mixed methods was carried out between 2022 and 2024. This involved a repeat survey with dementia care coordinators, carried out a year apart, alongside 57 interviews with coordinators, service managers, healthcare practitioners, people living with dementia and their carers. A realist logic of analysis was applied across all data sets. RESULTS: Three broad concepts were identified including (1) workforce design and organisational culture, (2) meeting the needs of people living with dementia and their carers and (3) connecting to services and integrating care. A total of 23 context-mechanism-outcome configurations (CMOCs) across these concepts highlighted that whilst tensions exist between the service and wider system, dementia care coordinators ultimately act as bridge builders, connecting people to much-needed support. However, services like this could become a victim of their own success due to increasing caseloads and the risk of staff burnout. CONCLUSIONS: The dementia care coordinator service is capable of supporting people who are pre- and post-dementia diagnosis despite the care system being under strain. This is a direct result of the bridge building work of the dementia care coordinators. Our findings support evidence-based recommendations for those wanting to implement and sustain a system-wide service and provide evidence for policy makers to consider increased funding for this service nationwide.
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Some research suggests that dementia care coordination is mostly a non-clinical role placed in the community, who are likely to face barriers due to access, and lack of standardised documentation.
“In contrast to the model’s recommendation and our findings, some research suggests that dementia care coordination is mostly a non-clinical role placed in the community, who are likely to face barriers due to access, and lack of standardised documentation [110, 111].”
From Do hospital-to-home transitions work for older adults with multiple long-term conditions including dementia? A realist review (2025) · cites this paper as [111]
The Background describes dementia care coordinator roles as largely non-clinical and notes a growing focus on community intervention. The Results section, “Connecting to services and integrating care,” reports that some coordinators lacked access to GP surgeries, creating a barrier to their work. The passages found do not support the claim that a lack of standardised documentation is another barrier. (LLM, conf=0.88)
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- Authors
- Abrams, R., Spiers, J., Maben, J., Grosvenor, W., Touray, M., & Gage, H.
- Affiliations
- University of Surrey (GB)
- Corresponding author
- Abrams, Ruth
- Venue
- BMC Medicine
- Published
- 2024-12-18
- Volume
- 22
- Issue
- 1
- Pages
- 584-584
- ISSN
- 1741-7015 (ISSN-L)
- PMC
- PMC11657511
- OpenAlex
- W4405522942
- Cited by
- 8
- References
- 34
- Citations by year
- 2026: 5 · 2025: 3
- FWCI
- 2.34
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- BMC Medicine (publishedVersion, cc-by-nc-nd)
- PubMed Central (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- National Institute for Health and Care Research
- Department of Health and Social Care
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Keywords
- dementia care, integrated care systems, care coordination, caregivers, people with dementia, organizational culture, service integration, caseloads, staff burnout, service sustainability, care transformation
- MeSH terms
- Dementia, England, Health Personnel, Humans, Surveys and Questionnaires, Caregivers, Delivery of Health Care, Integrated
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