Action needed to close ‘dementia data gap’, warns report

Calls have been made for improved data collection around dementia care after a new report revealed ‘significant gaps’.

A new report published today by the King’s Fund, titled Delivering care for people with dementia – why data matters, suggested a lack of available data had led to a ‘patchwork of incomplete insights’ on dementia, instead of a ‘meaningful picture of care’.

The report, funded by UK charity the Alzheimer’s Society and developed by the King’s Fund, looked at data from across health and social care, including prevalence, the health and social care interface, the dementia care pathway, experiences of care and the workforce.

However, key performance measures such as waiting times to assessment and diagnosis, non-medication related interventions and care and treatment outcomes were ‘notably absent’.

King’s Fund fellow and report author Helen Gilbury recommended that addressing the data gap would help manage the health of the population and measure the impact and implementation of any changes to treatment and care.

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According to the report, by 2040 the number of people living with dementia is expected to grow by 1.9%.

It states that having data on the number of people living with the illness is ‘vital for planning support effectively’.

Moreover, it claims that GP practices have not been recording all demographic factors for patients who are diagnosed with dementia, meaning the understanding of how effective different areas of the UK are at ‘identifying and diagnosing’ dementia is ‘compromised’.

It also impacts the ‘ability to mediate inequalities in people’s access to, and experience of, dementia care’, the report said.

There were also data gaps identified in care settings, with the Ms Gilbury claiming that though the data records where care is delivered, such as in a care home or residential, it does not state the type of care.

She said this meant social care data is ‘limited’, causing a ‘gap in knowledge about the type of care they need’, and about the needs of people who ‘do not meet the eligibility criteria for local authority funded support’.

The report also suggests that addressing the data gap will help achieve the recommendations from the Casey Commission and the incoming Modern Service Framework for Frailty and Dementia (MSF).

Recommendations of the Casey Commission, an independent review aimed to reform adult social care, include scaling up dementia drug trials and appointing a new Dementia Tsar to prepare the care and health systems for new treatments.

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MSF is a first-of-its-kind national initiative by NHS England which aims to standardise clinical guidelines, reduce care variation, and narrow inequalities for older people and those living with cognitive and physical decline.

Ms Gilbert said the government should ‘learn a lesson’ from the Sudlow report, an independent review of the UK health data landscape published in November 2024, which found ‘significant gaps, fragmentation, and barriers in health data across the UK’ which causes ‘real harm to patients, research and the NHS’.

Fellow at The King’s Fund and author of the report Ms Gilburt 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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The report comes as Baroness Louise Casey is set to appear in front of the Health and Social Care Select Committee on 24 June to discuss the progress of her independent commission into adult social care, which was launched in April this year.

She is expected to make clear recommendations to define and build the adult social care system that will meet the current and future needs of the population.

Care minister Stephen Kinnock is also set to appear.