Reducing inequalities for minority ethnic communities
Reducing inequalities across the care pathway for minority ethnic communities
What are we trying to find out?
There are three key questions we would like to answer:
- How can we raise awareness of, and reduce the negative attitudes associated with, neurodegenerative conditions in South Asian and Black communities in England?
- How can we improve the way in which neurodegenerative conditions are diagnosed and the diagnosis is explained to South Asian and Black communities?
- How can we improve access to treatment and support for South Asian and Black communities?
Why is this important?
The South Asian and Black (African Caribbean, African and Black British) communities are the largest minority ethnic groups in England. People from these communities are less likely to seek a diagnosis due to lack of awareness and negative attitudes towards people with neurodegenerative conditions such as dementia, Parkinson’s disease, Huntington’s disease and motor neurone disease. When they do try to access treatment and support, they are more likely to receive poor quality of care. This is a serious area of inequality. It is therefore important to raise awareness of neurodegenerative diseases in the South Asian and Black communities and ensure health and social care services are culturally sensitive so that all people receive good quality care.
How are we going to do it?
We are using several ways to answer these three questions.
- We will look at the existing evidence to find the best ways to raise awareness of neurodegenerative conditions and reduce negative attitudes in these communities. Once we have identified these, we will speak to Local Authorities, health and social care professionals and community groups to find the best way to put these solutions into practice.
- To improve the diagnosis process, we will first find out which areas in the country have larger numbers of people from South Asian and Black communities but lower diagnosis rates than would be expected. We will speak to health care professionals in these areas and ask about what they find particularly challenging. We will also speak to health care professionals in areas with high diagnosis rates. We will use the information we collect to recommend the best process for diagnosis when working with South Asian and Black communities.
- We will look at the existing evidence to find out what prevents people from South Asian and Black communities accessing treatment and support and what helps them access the support they need. We will then work with service providers and commissioners to develop a checklist to help services become more culturally inclusive.
Who is involved?
This project is led by Dr Sahdia Parveen (University of Bradford) and involves several other researchers and experts by experience across the country.
Dr Maria Caulfield, Dr Catherine Quinn and Professor Jan Oyebode (University of Bradford), Professor Matthew Prina (Newcastle University), Professor Karen Windle (Ulster University), Dr Adelina Comas-Herrera (London School of Economics), Rachael Litherland (Innovations in Dementia), Dr Catherine Charlwood and Professor Linda Clare (University of Exeter)
Experts by experience: Jagdish (who cared for her mother who lived with dementia) and Shafaq (who lives with Parkinson’s Disease).
How will we share our findings?
We will
- Produce accessible information for the public which will be shared via the DeNPRU Exeter website, radio, newspapers, and social media
- Share reports and host events with community groups, Local Authorities, and national charities
- Publish articles in academic journals and present the findings at conferences
Publications
Policy report on ‘Improving awareness and reducing stigma of neurodegenerative conditions in minority ethnic communities’
This report shares findings from the first work package of our project ‘Reducing inequalities across the care pathway for minority ethnic communities’. The focus here is on campaigns which improve awareness and reduce stigma of neurodegenerative conditions. The report details the campaigns found and their characteristics; research into evaluating such campaigns; and what we learned through stakeholder consultation with experts by experience and professionals.
Caulfield, M., Parveen, S., Prina, M., Oyebode, J., Windle, K., Charlwood, C., Comas-Herrera, A., Quinn, C., & Clare, L. (2025). Interventions to improve awareness and reduce the stigma associated with neurodegenerative conditions in minority ethnic communities: a scoping review protocol. PLoS One, 20(5), e0322009. https://doi.org/10.1371/journal.pone.0322009 (open access)
Webinar 4: Reducing inequalities across the care pathway for minority ethnicities
This is a recording of our fourth webinar, sharing findings from our ongoing policy research project into reducing inequalities for minority ethnic communities. We share findings from our workstream on raising awareness of neurodegenerative conditions and reducing stigma.
Infographic on 'Improving awareness and reducing stigma of neurodegenerative conditions in minority ethnic communities'
This infographic provides an overview of the aims, methodology, findings and policy recommendations for our project 'Reducing inequalities across the care pathway for minority ethnic communities.'
Alzheimer Europe conference abstract - Improving awareness and reducing stigma of dementia in minority ethnic communities: a scoping review and consultation
Bolonga, Italy, 6-8th October 2025
Policy brief on 'Improving awareness of and reducing the stigma associated with neurodegenerative conditions in Black British and South Asian communities'
This policy brief addresses the evidence on community-focused campaigns to raise awareness and reduce stigma of neurodegenerative conditions in Black British and South Asian communities.
Policy brief on 'Barriers and facilitators to health care for people from minority ethnic communities living with a neurodegenerative condition'
This policy brief summaries key messages and findings from an umbrella review to understand the barriers and facilitators affecting service use in people from minority ethnic communities living with a neurodegenerative condition.