In 2025, The King’s Fund undertook a scoping study of the available data on dementia care for the Alzheimer’s Society. This has resulted in a new “long read” by the King’s Fund, titled “Delivering care for people with dementia – why data matters”.
The “Key Messages” from the study are as follows:
- With an ageing population, there are more people living longer with a major condition in England. Among these, dementia accounts for the greatest burden of illness. The impact of dementia on people living with the condition and their family and friends is profound and life-changing.
- Data is vital for understanding the scale and nature of demand, planning care, ensuring equitable access to, and outcomes from existing care, and measuring the impact of new treatments and services.
- Despite a range of available data on dementia across health and social care, the quality and consistency of that data lead to an incomplete and fragmented picture of care.
- There are important opportunities for improving dementia care – through the Casey Commission on adult social care reform, the development of modern service frameworks and moves towards population-based strategic commissioning.
- Addressing the data requirements for delivering effective health and social care, including data infrastructure, is key to ensuring that these future actions result in meaningful change for people living with dementia, their families and carers.