The work, titled 'Delivering care for people with dementia - why data matters', says there are significant gaps leading to 'a patchwork of incomplete insights [rather] than a meaningful picture of care'.

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.'

The Sudlow Review, which 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, providing 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. 

A Department of Health and Social Care spokesperson said: ‘Too many people with dementia are not getting the timely diagnosis and support they need - and we are determined to change that.

‘As part of our 10-Year Health Plan, we will introduce national standards to improve diagnosis and ensure people can access the right care and support wherever they live. As part of this, we will consider what interventions should be supported – including reviewing data and targets.

‘We are also introducing the Single Patient Record, bringing together patient health information in one, secure, easy-to-access place. This will allow NHS providers to securely access a patient's medical history from any NHS facility – resulting in safer, more co-ordinated care, including for those with dementia.'