The MRC PPU has partnered with Dr Nathasia Mudiwa Muwanigwa from the UK Dementia Research Institute at University College London (UCL) and the Community African Network to explore how creative, community-led approaches can support more open conversations about dementia and dementia research in Black African and Caribbean communities.
On 16 February 2026, a jointly-facilitated workshop in East London brought together 15 participants with lived experience of dementia, including carers, community leaders and an Admiral Nurse, as part of UCL’s Mindful conversations: black communities talk brain health & dementia series.
As part of the workshop, we tested whether our MRC PPU Exchanges art card activity - originally co-developed with and for the Parkinson’s community - could be adapted to support meaningful dialogue around brain health, dementia and dementia research.
The workshop created a safe, inclusive and culturally grounded space for discussion, enabling participants to reflect on their experiences and share perspectives that are often unheard in traditional research settings.
“It is very difficult for the black community to come out and speak up to taboo subjects”
Workshop participant
“Well done researchers. You broke the silence in our community about dementia.”
Workshop participant
Through the use of the Exchanges art cards, participants were able to explore complex and sensitive topics such as stigma, early detection and access to support in ways that felt accessible and empowering. The activity enabled deep, reflective conversations and highlighted the importance of culturally relevant tools, trusted community spaces and inclusive approaches to research involvement.
"Using the Exchanges cards was such a brilliant way of starting the focus group. By using these visual prompts, it created a space where there were no 'right or wrong' answers, just a genuine opportunity for everyone to share. It opened up the conversation in a totally different way, sparking fascinating insights into how dementia is perceived within the community.
Because we started with the cards, the women were already connected and thinking deeply by the time we moved to the next session of the focus group. I’m so excited about the potential for Exchanges to be adapted for the dementia community; it is such a powerful tool for breaking down stigma and opening up the conversations."
Dr Nathasia Mudiwa Muwanigwa, University College London (UCL) UK Dementia Research Institute
Insights from the session are already informing the next phase of the Exchanges project. Planned developments include adapting the activity for dementia-focused use, co-producing culturally relevant and diverse materials, and exploring opportunities to engage and involve the wider community in dementia research.
“We greatly value this partnership with UCL and the Community African Network, which demonstrates the power of culturally grounded, community-led engagement in opening up conversations about dementia.
The session showed that the MRC PPU Exchanges art card activity can successfully create safe, inclusive spaces to discuss a historically taboo topic, enabling participants to feel empowered, share lived experience, and engage more confidently with research.
These outcomes will directly inform the adaptation of Exchanges for dementia-focused use, and support our shared ambition to embed more inclusive, meaningful public involvement in dementia research.”
Sarah Patrick, Patient & Public Involvement Consultant, MRC PPU
This work was supported by the UCL East Community Engagement Seed Fund and forms part of a growing collaboration to support more inclusive, community-led dialogue around brain health, dementia, and dementia research.