A new report from The King’s Fund has warned that closing the UK’s growing “dementia data gap” will be essential if future reforms from the Casey Commission and the forthcoming Modern Service Framework (MSF) for Frailty and Dementia are to deliver meaningful improvements in care.
The analysis, Delivering care for people with dementia – why data matters, highlights significant shortcomings in the quality and consistency of data across the dementia pathway. The report finds that current information offers only a fragmented view of care delivery, making it difficult for leaders across health and social care to plan services effectively or track whether interventions are working.
Fragmented data undermining decision-making
According to the King’s Fund, gaps span multiple areas of dementia care, including:
- Prevalence and population-level insights
- The interface between health and social care services
- The full dementia care pathway
- Patient and carer experience
- Workforce capacity and capability
Critically, the report notes that several core performance measures are either weak or entirely absent. These include waiting times for assessment and diagnosis, access to non-pharmacological interventions, and robust data on outcomes from treatment and care.
Without this level of detail, policymakers and system leaders are left making decisions based on incomplete or inconsistent information, limiting their ability to improve services or demonstrate impact.
Policy context: Casey Commission under scrutiny
The publication comes ahead of Baroness Casey’s appearance before the Health and Social Care Select Committee on 24 June, where she is expected to update MPs on the progress of her independent commission into adult social care reform. Care Minister Stephen Kinnock is also due to give evidence.
The King’s Fund argues that improving the evidence base on dementia care must be a priority for both the commission and the MSF if their recommendations are to translate into tangible benefits for patients and families.
Learning from the Sudlow Review
To address the issue, the report points to the findings of the Sudlow Review, which examined the UK’s health data landscape. It sets out a potential roadmap for improvement, including:
- Treating health and social care data as critical national infrastructure
- Strengthening leadership and accountability for data at a national level
- Creating a unified, national health data access system to maximise usability
The King’s Fund suggests that applying these principles could help close longstanding gaps, improve interoperability, and ensure more consistent data collection across services.
Opportunity for system-wide improvement
The report concludes that both the Casey Commission and the MSF present a timely opportunity to address systemic data weaknesses. Without decisive action, there is a clear risk that reforms – however well intended – will fall short due to an inability to measure progress or target interventions effectively.
Helen Gilburt, Fellow at The King’s Fund, said:
“Addressing the dementia data gap will be key to successfully implementing the recommendations that emerge from both the Casey Commission and the Modern Service Framework for Frailty and Dementia.
“As this analysis finds, there are fundamental gaps in the data that mean our understanding of dementia care resembles a patchwork of insights rather than a clear picture. Lessons should be taken from the Sudlow Review to rectify this alongside addressing the disparity in health and social care data.
“Without it, policymakers and practitioners will struggle to fully understand if the changes they are implementing are having the desired effects and failing to deliver promised improvements in diagnosis and treatment for people living with dementia, their families and carers.”
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