Implementing and sustaining dementia care coordinators across integrated care systems: a realist evaluation

Abstract

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. Supplementary Information The online version contains supplementary material available at 10.1186/s12916-024-03806-0.