The Kings Fund - System working lays the groundwork for improved dementia diagnosis but more to be done

Integrated care systems are enabling the improvement of dementia diagnosis by supporting collaborative working across the health and care system, new research from health and care think tank The King's Fund finds. While there is much more progress to be made, integrated care systems (ICSs) present a significant opportunity to enhance ways of working between different services and to enable people to receive improved dementia diagnoses and more co-ordinated support.

The research shows that some ICSs are beginning to make progress towards their goals of ensuring people using health and care services experience better and more joined-up care, while supporting a shift in focus towards prevention and early intervention. Commissioned by Alzheimer's Society, this project examines progress through the lens of dementia, exploring the enablers and barriers to improving diagnosis rates. The research included interviews with people from three ICS case study sites, visits to dementia support services to understand lived experiences, and a roundtable with national and local organisations.

There are 900,000 people living with dementia in the UK, and this number is expected to rise to 1.6 million by 2040. While there is currently no cure for dementia, an early and accurate diagnosis enables people to access support and potential treatment to manage symptoms better, helping them to maintain their independence and quality of life for longer. It also enables people and their families to plan ahead better, and may help the health and care system save money in the long-term.

High-quality dementia diagnosis and care involves many different parts of the health and social care system working together effectively. The research finds that ICSs are helping to create the conditions for better collaboration between different parts of the system and there are pockets of improvements in dementia diagnosis as a result. For example, where partners within a system are working together to prioritise the improvement of diagnosis rates and creating a shared delivery plan to do so; or where they are sharing learning and spreading good practice across their local system. The authors found key enablers of improvement include efforts to strengthen relationships between primary care, memory clinics and other services, and the introduction of new extended roles for GPs (for example, to improve dementia diagnosis in care homes).

However, the authors also highlight that there are more opportunities to be realised. For example, where it is not already happening, organisations within an ICS can work together more closely to shift resources towards prevention and early diagnosis, and to co-ordinate training opportunities for GPs and other clinicians on dementia diagnosis. More regular and meaningful engagement with the public would help to destigmatise the condition and unpick the barriers to access experienced by underserved communities, allowing for earlier identification of symptoms and helping to reduce inequalities in diagnosis.

There is also more to do to increase public awareness of the support available once someone has received a dementia diagnosis. This will require ensuring adequate resources for dementia support services, as a lack of awareness or access to support can prevent people from seeking a diagnosis.

With the health and care system in England under severe pressure, ICSs face significant challenges when striving to improve dementia diagnosis. Most of the recent progress of dementia care has its roots in partnerships built over several years, before ICSs were given statutory powers two years ago, and the research found that there can still be poor links between the various parts of the system, with variation in ownership, leadership and prioritisation at local level. The authors recommend that the government and national bodies must ensure that national policy and accountability arrangements help to promote the local partnership working which lies at the heart of successful ICSs, and also that ICSs have the support they need to test and scale up learning from new approaches to dementia diagnosis.

Sally Warren, Director of Policy at The King's Fund, said:

'ICSs were created to bring about whole-system improvements for the treatment of conditions such as dementia, so that people can access high-quality co-ordinated care. It is good to see that there is evidence of this happening in some areas and that ICSs can be effective vehicles to drive this forward when their potential is fully used. When ICS partners come together with a shared plan, cross-system leadership, a culture of collaboration, and a goal of addressing inequalities, they can successfully help people to live better and manage their complex health conditions.

‘With an ageing population, it is possible that the landscape of dementia diagnosis and care may change significantly over the coming years, and there is a real risk that some ICSs may lack capacity to plan for the future at the same time as responding to immediate pressures. In the long term, ICSs will need further support from the government, NHS England and other national bodies to build capacity for testing new approaches, and spreading successful innovations and ways of working for diagnosis and support, as well as to strengthen collaboration between system partners.'