The NIHR Policy Research Unit in Dementia and Neurodegeneration at the University of Exeter [1] has published two new policy briefs addressing persistent ethnic inequalities in neurodegenerative conditions across the UK care pathway.
Together, the briefs focus on improving access to services and reducing stigma for people from minority ethnic communities living with dementia, Parkinson’s disease, Huntington’s disease and motor neurone disease.
1. Barriers and facilitators to health care for people from minority ethnic communities living with a neurodegenerative condition
The first brief [2] draws on an umbrella review and consultation with people with lived experience, carers, practitioners and stakeholders.
The report highlights that around 18 percent of the UK population are from a minority ethnic background, with an estimated 50,000 people from minority ethnic communities living with dementia, alongside thousands living with Parkinson’s disease, Huntington’s disease and motor neurone disease.
Key findings include:
- Evidence to date is heavily dementia focused, with little research on access barriers for other neurodegenerative conditions.
- Language barriers and misconceptions about symptoms can delay help seeking.
- Limited specialist provision and inflexible services reduce trust and engagement.
The authors recommend a whole systems approach built around:
- Stronger integration between specialist, primary and social care services.
- Embedding culturally responsive, person centred care in everyday practice.
- Developing a culturally aware workforce supported by scalable training models.
The brief emphasises that improving continuity, coordination and trust across the care pathway is essential to reducing inequities and supporting earlier, more proactive care.
Read the Brief [2]
2. Improving awareness of and reducing the stigma associated with neurodegenerative conditions in British Black and South Asian communities
The second brief [3] focuses specifically on awareness raising and stigma reduction initiatives.
Drawing on a review of existing campaigns and consultation with lived experience experts and professionals, the report finds that lack of awareness and stigma remain significant barriers to early diagnosis and support.
Across 33 identified campaigns, most focused on dementia, with far fewer addressing Parkinson’s disease, Huntington’s disease or motor neurone disease. Campaign formats ranged from videos and podcasts to community led initiatives.
The brief outlines five core conditions for effective campaigns:
- Culturally tailored messaging aimed at specific ethnic groups and generations.
- Co production with people from target communities.
- Sustainable, long term partnerships.
- Improved recording and use of ethnicity data.
- Collaboration across health, social care, voluntary and faith sectors.
It also stresses the need to move beyond dementia alone, broadening awareness and research to encompass the full spectrum of neurodegenerative conditions.
Read the Brief [3]
Why this matters
Both briefs align with the ambitions of the 10 Year Health Plan, particularly around prevention, early intervention and reducing health inequalities. They make clear that addressing inequities in neurodegenerative care is not solely about individual services or campaigns, but about coordinated systems, trusted relationships and culturally responsive practice embedded at every level.
For researchers, clinicians, policymakers and community organisations working in dementia and neurodegeneration, these briefs provide clear, actionable recommendations grounded in evidence and lived experience.