Improving awareness and reducing the stigma of neurodegenerative conditions in minority ethnic communities

Why are we doing this research?

Many of those who migrated to the UK in the second half of the twentieth century and their descendants are reaching ages where they may experience neurodegenerative conditions. Among many people from minority ethnic communities, misconceptions about dementia and other neurodegenerative conditions regarding their causes, symptoms, and treatment, are common. These misunderstandings can reinforce stigma and create barriers to seeking help. Community-based campaigns to raise awareness and reduce stigma are essential for increasing understanding and promoting help seeking.

In this study we sought to identify and describe campaigns aimed at raising awareness or reducing stigma of neurodegenerative conditions in minority ethnic populations. We focused on campaigns designed for Black and South Asian communities, as these are the largest minority ethnic populations in the UK.  A protocol for the study is available in the Journal PLOS One .

What we did

We looked for examples of campaigns to raise awareness and/or reduce stigma around neurodegenerative conditions for minority ethnic communities. A ‘campaign’ could be anything designed to promote awareness and understanding of a neurodegenerative condition. We also searched for academic articles evaluating campaigns.

We consulted people of minority ethnicities living with or caring for someone with a neurodegenerative condition and providers from charitable/statutory services to gain their views on the nature of effective campaigns.

What we found

• We found that most campaigns focused on dementia and were designed for South Asian populations.
• Campaigns that resonated most with communities featured personal stories from people with lived experience from the relevant ethnic backgrounds, information delivered by professionals, the use of community languages, and culturally sensitive discussions on topics such as stigma, faith, and spirituality.
• Our consultees told us that building trusting, long-term relationships between people from minority ethnicities and those delivering services is key to changing attitudes.
• They emphasised that campaigns that prioritised conversation and personal stories alongside information are likely to be most effective. These should ideally be delivered by individuals who share the same ethnicity and/or are qualified professionals.
• Due to stigma, some campaigns may work best when integrated into broader health or community initiatives.
• Professional consultees stressed that gaps in ethnicity data and a lack of long-term funding undermine impactful campaigns.

What we recommend:

We used these insights to develop policy recommendations around five areas:

1. Developing tailored campaigns: Incorporate culturally tailored messages and delivery. Embed campaigns in wider initiatives. Link with existing community groups.
2. A culturally competent workforce: Attract staff from diverse communities. Ensure all staff have cultural competence and confidence.
3. Sustainability: Long-term relationships are vital to build knowledge and trust and tailor approaches, therefore, there is a need for longer-term funding.
4. Recording of ethnicity data: Ensure ethnicity data are captured, staff know how to ask and record, and organisations know how to access.
5. Strengthening collaboration: Share resources across services and sectors. Collaborate across services to raise awareness across different generations.

 Our findings are available on the DeNPRU Exeter NIHR website

The next phase of the project is already underway. It focuses on identifying the factors that influence access to and use of services across the care pathway for people from minority ethnic communities.

This work forms part of a wider project focused on reducing inequalities across the care pathway for minority ethnic communities. The project is part of the NIHR Policy Research Unit (PRU) in Dementia and Neurodegeneration led by the University of Exeter in collaboration with the University of Bradford, the London School of Economics, Newcastle University, and the University of New South Wales. We are known as DeNPRU Exeter. You can learn more about DeNPRU Exeter and its projects on the DeNPRU Exeter NIHR website.

The project team is led by Professor Jan Oyebode and Dr Sahdia Parveen with support from Dr Catherine Quinn, Dr Maria Caulfield, and Dr Gary Fry from the University of Bradford. Additional collaborators include Professor Linda Clare and Dr Catherine Charlwood from the University of Exeter; Professor Matthew Prina from Newcastle University; Dr Adelina Comas-Herrera from the London School of Economics; and Professor Karen Windle from Ulster University.

We would like to express our thanks to the Experts by Experience on the project team, Shafaq Hussain-Ali and Jagdish Brar-Orgill. We also sincerely thank the professional and lived experience consultees for generously sharing their experiences. This project is funded through the NIHR Policy Research Unit in Dementia and Neurodegeneration University of Exeter, reference NIHR206120. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.