Month: August 2025

Project title: Estimating the prevalence rate of people with a formal dementia diagnosis by broad ethnic group.

We have successfully secured funding for a project to produce prevalence estimates of people with a formal dementia diagnosis, broken down by broad ethnic group. This project is funded through the EquaDem Network, which aims to develop solutions to barriers in dementia diagnosis and care, and to influence clinical and social care practice.

The project will be led by Dr Laura Gamble, from Newcastle University.

Background

Research shows that people from minority ethnic groups have been found to be at greater risk of dementia. Individuals from these groups face a number of barriers which make accessing dementia diagnoses and healthcare services more difficult. After diagnosis, different people need different types of support. However, those who plan and provide dementia care can only make good decisions if they have the right information. Right now, we don’t know exactly how many people from minority ethnic backgrounds have dementia, either nationally or in different local areas. In fact, for 17% of dementia diagnoses (85,412 people), ethnicity was not recorded. This means we cannot fully understand or plan the right support for different communities.

What are we planning to do?

Our project aims to change this. We will bring together information from different data sources to estimate the number of dementia diagnoses by ethnicity across local NHS areas (sub-ICBs). Where possible, we will also use local NHS data to test our method, alongside other datasets. We will work closely with people affected by dementia and healthcare professionals to understand their views on our approach, its practical importance, and ethnicity data collection. We hope to share not just numbers, but also insights into how data recording can be improved.

Why are we doing it?

This research will help ensure dementia services are planned fairly, so resources are used wisely, and everyone gets the support they need. The lack of ethnicity data is leading to inequalities in NHS care; this is our chance to make a real difference.

We are keen to collaborate with local Integrated Care Boards to validate our findings. If this would be of interest to you or to find out more information, please contact denpru@exeter.ac.uk

Reducing inequalities for people living alone with dementia.

This DeNPRU Exeter project has produced comprehensive policy recommendations that could help reduce the significant inequalities experienced by individuals living alone with dementia. These focus on four themes:

• Acknowledging the scale of the issue
• Adapting pathways and services to provide more responsive personalised care
• Strengthening community support
• Making research inclusive and practically relevant

Key impacts to date:

• Inclusion in The Dementia 100 Pathway Assessment Tool. ‘Criteria 1.11. Commissioned services take into account the individual needs of those living alone with dementia’
• Evidence embedded in Alzheimer’s Society Local Dementia Strategy Toolkit. ‘Preventing Well. Recommendation 3.3: Systems should establish a preventative approach to reducing self-neglect among people living with dementia’
• Submitted as evidence to the 10-Year Health Plan to inform the three key shifts in healthcare
• Cited in Care England’s report ‘The current state of dementia diagnosis and care in England’ highlighting the significant gaps and inequalities in the dementia care pathway

This research demonstrates how people living alone with dementia have more unmet needs than those living with others and face significant inequalities across the diagnosis and care pathway. It suggests the need to find new and better ways of meeting the needs of people living alone with dementia.

Proactive support and crisis prevention will ease pressures on NHS and social care services and help people living alone with dementia to maintain their independence and live well.

Read more about the project here.