Abstract
Working with the Applied Research Collaboration Living well with Dementia Implementation Lead, to undertake research that responds to system need, in October 2022, The University of Surrey undertook a small scale focus group, led by Dr Ruth Abrams, to explore the successes and challenges of a pilot project introducing a new role, that of Dementia Care Coordinator (DCC), into Kent and Medway Integrated Care Board (ICB).
Dementia is a progressive syndrome that has huge individual, family, societal and economic impact. Navigating the health and care system both pre and post diagnosis can be particularly challenging for those living with dementia and those caring for them. Diagnosis rates remain low in comparison to national targets, meaning interventions that could help people live well with dementia and support quality of life can be delayed. Community support is inconsistent and often lacking, meaning people struggle to access services that could support them often resulting in health and care interventions including hospital admissions that could be avoided. To address this issue, Kent and Medway ICB have recently implemented a Dementia Care Coordinator role (DCC). For nine months, from July 2021, the ICB funded nine DCC posts to improve care for people with dementia and their families. Each DCC was assigned to a Primary Care Network (collection of GP practices covering 30,000 -50,000 people). The role is proactive, supporting patients and their carers to navigate the care system from pre diagnosis to end of life care including bereavement support, as needed.
Three DCCs attended a 90 minute online focus group. Data were subsequently transcribed and analysed using thematic analysis which is a rigorous analytical approach to qualitative data.
Findings indicate that, according to DCCs, the service appears to reduce anxiety and worry amongst people living with dementia and their carers across all points of the dementia journey. Knowing that a key point of contact is available to them means that when they notice a change in their wellbeing, they may feel more inclined to contact an impartial, non-clinical individual for signposting. In the meantime, DCCs weave webs of care around people living with dementia so to provide the best possible support. DCCs found it challenging at times to: (1) work with GPs; (2) to support people living with dementia whilst also living alone; (3) manage service user and carer expectations about their role and: (4) to manage their growing patient lists and workload. Overall, to ensure a sustainable service, key recommendations in need of further exploration include: (1) ensuring buy in from key stakeholders, specifically GPs; (2) facilitating staff support and training including clinical supervision/ observations, and: (3) ensuring the service is adequately staffed to protect staff workload and ensure sufficient capacity to enable delivery of high-quality care to service users.
A larger scale evaluation is currently underway, due to be completed in October 2024 (see Abrams et al., 2023 for further details).