InvolveD: Involving South Asian, Black African and African Caribbean People in Designing Better Dementia Support
Parallel 4
18 November, 2026 12:00 – 1:10 pmBeyond the Diagnosis – Building Networks, Connection and Inclusive Support
Dr Karan Jutlla
Associate Professor (Reader) in Dementia Care and Inclusion
University of Wolverhampton
Summary
People from South Asian, Black African and African Caribbean communities often face more barriers to getting a dementia diagnosis and support than White British people. These barriers can include stigma, language differences, lack of information, and services that do not always fit people’s cultural needs. Funded by the National Institute for Health and Care Research (NIHR), the InvolveD study was designed to help address this by working with communities to create better dementia support that is rooted in local places and relationships.
We worked in Sandwell and Wolverhampton with people living with dementia, carers, community organisations, local authority partners and health and social care staff. We used a community-based participatory research approach, which means that community members were involved throughout the project, not just asked for their views at the end. We held creative workshops with 153 participants and used drawing, mapping and discussion to explore what good dementia support looks like in everyday life.
We found that trusted community organisations were essential for engaging people and making them feel welcome. Three things helped the project work well: trust, creative methods that made it easier for people to take part, and shared ownership of the project. These approaches helped people with dementia, carers and community members to share their ideas openly and shape the findings together.
The project led to a co-produced model of place-based dementia support that reflects local culture, community assets and the role of trusted “community mobilisers” who help connect people to support. The findings are already being used to inform local service redesign and dementia strategy work. In the longer term, this work could help reduce inequalities in dementia care and support more communities to design services that truly meet their needs.