Dementia is one of the UK’s most significant health challenges. Currently, around 900,000 people are living with dementia in the UK, and this number is expected to rise to 1.4 million by 2040.
Kent, Surrey and Sussex have some of the highest rates of dementia in the country- with an estimated 67,500 people living with the condition. Often, dementia care is fragmented and relies on individuals navigating the health and care system when they are less able to do so.
With our ageing population set to increase disproportionately, compared to the rest of the UK, this poses a real challenge to our regional health and care systems.
In 2021, Kent and Medway Integrated Care Board (ICB) introduced Dementia Care Coordinators (DCCs) across its 42 primary care networks. This service aims to boost low dementia diagnosis rates and provide better support for people with dementia and their carers before, during, and after a diagnosis. The service, jointly funded by Kent County Council and the Integrated Care Board, is run by two third sector providers that hire and train the DCCs.
The DCCs focus on non-clinical support, helping people with dementia and their carers navigate the health and care system. They work closely with GPs and other professionals to improve access to dementia assessments and services, and they guide families through the challenges of living with dementia.
Researchers from the University of Surrey set out to look at how well the DCC service in Kent and Medway is working and for who. Led by Dr Ruth Abrams and funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) and in collaboration with the Health Innovation Kent Surrey Sussex, the research team gathered data through surveys, interviews and organisational metrics.
Findings identified that DCCs:
- play a vital role in providing proactive and responsive care and prioritisation
- need support and resources to keep working, and
- can only work well if the wider health and care system understands their scope of practice.
The report Implementing and sustaining the Dementia Care Coordinator Service in Kent and Medway: Executive summary and recommendations, published by the University, sets out a list of recommendations to help improve and sustain the DCC service, with a focus on three key areas:
- To support the workforce by recruiting person-centred, capable and diverse candidates; providing ongoing training; building a DCC community, protecting DCCs' time; and promoting the role of the DCC to increase visibility.
- Meet the needs of people living with dementia and their carers by enhancing services for those with advanced dementia or living alone and enabling those with early onset dementia to co-design services.
- Enable wider system working by using data linking to demonstrate the impact of DCCs, boosting local service provision to match referral demand; and making sure outcomes capture the value of ongoing support, not just diagnosis rates.
Ruth Abrams explains:
"The DCC service is a much-needed bridge, capable of connecting people to services throughout their dementia journey, even when the care system is under strain. By acting as a consistent point of contact, DCCs help people with dementia and their carers feel supported throughout their dementia journey. The service has already showed its potential to transform dementia care in Kent and Medway.
"However, our evaluation warns that as demand for dementia care grows, the service may face challenges if it does not receive the resources and support it needs to expand. Ensuring the long-term success of the DCC service will require careful planning, stronger integration with the wider healthcare system, and a commitment to addressing gaps in local care provision.
"This innovative approach not only benefits individuals but could also serve as a model for improving dementia care across the UK."
Kath Sykes, Implementation Lead for Living Well with Dementia at ARC KSS and Health Innovation Kent Surrey Sussex, is delighted to have been able to support the Kent and Medway ICB, its system partners, and Surrey researchers with this research and explains why:
"By nature of their condition, and the complexity of navigating health and care services, accessing care when needed is particularly challenging for people living with dementia and this impacts individuals, carers and the wider health and care system.
"The dementia care coordinator service in Kent and Medway is unique because it has been commissioned at system level, with DCCs employed across the whole of Kent and Medway. As a result, it reaps system benefits- equitable access, providing one point of contact which connects the system for people living with dementia, care givers and wider health and care system partners. Ruth's research provides valuable insights into the challenges of delivering this incredibly important role, as well as the benefits to people living with dementia. Overall, the DCC role has been so successful it is being recommissioned in Kent and Medway.’’
Download a copy of the Executive Summary and Recommendations.
