New report exposes critical gaps in data about dementia

Lacking the basic data on dementia

The report, titled 'Delivering care for people with dementia - why data matters', examines the available data on dementia care and finds that there were significant gaps leading to 'a patchwork of incomplete insights, rather than a meaningful picture of care'.

This causes significant issues for policymakers and practitioners, as without good data they cannot effectively manage the health of the population or measure the impact and implementation of any changes to treatment and care.

Questions on social care for dementia

The findings come as Baroness Casey is set to appear in front of the Health and Social Care Select Committee on Wednesday, 24 June to discuss the progress of her Commission. Care Minister Stephen Kinnock will also appear to answer questions on social care.

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 workforce finding areas that could be improved upon in all these important areas.

Key performance measures such as waiting times to assessment and diagnosis, non-medication related interventions and care and treatment outcomes are notably absent.

Addressing gaps in the data

To improve the situation, the King's Fund points to the recommendations of the Sudlow Review. The Sudlow Review looked at the health data landscape in the UK, to provide a template for change by recognising health and social care data as part of critical national infrastructure.
 
It provides leadership and accountability for data, and maximising the utility of data by establishing a single, national, health data access system. 

The work highlights opportunities for the Casey Review and MSF to address the data available, including addressing key gaps in data to ensure recommendations lead to meaningful change for people with dementia. 

Helen Gilburt, Fellow at The King’s Fund and author of the long read, 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.’

Our position on the dementia data gap

Michelle Dyson, Chief Executive of the Alzheimer’s Society, said:

'Robust data should be the foundation of any serious response to dementia. Yet we still lack even the basic information we take for granted in other diseases. In cancer for example, every patient journey is tracked and used to improve care.'

In dementia, data is patchy or absent, leaving critical gaps in our understanding of how many people are affected, how they are moving through the system, and how well services are performing.

'This important work by the King’s Fund exposes how fragmented the existing data is and the gaps that exist at both a national and local level. We know that what gets measured gets done and until this is addressed, people with dementia will continue to be left behind.

The Casey Commission and the Modern Service Framework for Dementia and Frailty offer a rare opportunity to build a future where dementia no longer devastates lives. If we are serious about tackling the UK’s biggest killer, quality and consistency of data must be pushed up the agenda and provide the foundation of these reforms.'