Dementia affects around one in eleven people over the age of 65 in the UK. As the population becomes increasingly diverse, there is a growing need to ensure that dementia services and support meet the needs of people from different ethnic, cultural and religious backgrounds.
However, evidence has consistently shown that people from Black, Asian and minority ethnic communities experience significant inequalities in dementia care. These include delays in diagnosis, reduced access to dementia services and treatment, cultural and language barriers, and poorer outcomes following diagnosis.
To help address these challenges, the NHS Race and Health Observatory has commissioned the Strategy Unit, working in partnership with People Street and the NHS Health Economics Unit, to undertake a major review of culturally adapted dementia care in England.
Understanding the barriers to dementia care
The reasons behind inequalities in dementia care are complex and interconnected. They can include differences in how dementia is understood across communities, a lack of culturally appropriate services and support, language barriers, and experiences of racism and discrimination within healthcare settings.
While these challenges are well documented, there remains a need for a deeper understanding of how they affect people's experiences of seeking help, receiving a diagnosis and accessing support throughout their dementia journey.
This review aims to move beyond describing inequalities and towards identifying practical opportunities for improvement. It will explore the barriers that delay or limit access to dementia care, while also examining examples of culturally adapted approaches that are helping people and communities receive better support.
Bringing together community insight and analytical expertise
A key feature of the review is its community-led approach.
Working alongside People Street, a community-led research organisation, the project has engaged experienced community researchers from diverse backgrounds across England. They bring personal experience of caring for people living with dementia or supporting family members affected by the condition.
Through research sprints, interviews, surveys and care plan reviews, community researchers will help ensure that the experiences and perspectives of people most affected by these inequalities are central to the review.
Alongside this community-led work, the Strategy Unit will undertake interviews with NHS staff and other professionals involved in dementia care to better understand how services are delivered and what may be needed to improve access and outcomes for people from global majority communities. We are currently recruiting professionals to take part in interviews - if you would be interested, please complete this expression of interest form (due to close on 26th June).
The review will also include a literature review, case studies of existing cultural adaptations within dementia services, and quantitative analysis undertaken by the NHS Health Economics Unit.
Our role in the review
The Strategy Unit is leading the research and analytical elements of the programme, working closely with partners to bring together evidence from multiple sources and develop a comprehensive understanding of current challenges and opportunities.
"Navigating dementia is complex and often distressing for individuals and the people who support them. In a society that is ethnically, culturally and religiously diverse, what helps someone to live well with dementia may look very different across communities. This review goes beyond describing long-standing inequalities. It will identify the barriers that delay or limit access to support, while also learning from the culturally adapted approaches that are already helping some people to receive better care.
"What makes this work particularly powerful is the way it brings together funders, community researchers and NHS partners, combining lived experience with analytical expertise to build a clearer picture of what effective, culturally responsive dementia care may look like in practice for different people and communities."
Jane Greenstock, Senior Consultant at the Strategy Unit
Creating learning for the health and care system
The review will run over 12 months, with findings expected in 2027.
Alongside identifying barriers to care, the work will highlight examples of promising practice and explore what changes may be needed to improve access, experience and outcomes for people living with dementia from Black, Asian and minority ethnic communities.
As with all of our work, an important part of the Strategy Unit's role is to help create learning that can be shared across the health and care system. Working with the NHS Race and Health Observatory, People Street and other partners, we will support the dissemination of findings and help ensure that evidence generated through the review can inform future policy, service design and practice.
By bringing together community voices, professional expertise and robust analysis, this work aims to contribute to a more equitable and culturally responsive approach to dementia care across England.
If you would like to learn more about this work, please get in touch with Jane Greenstock (Project Director, jane.greenstock1@nhs.net )