Bridging Gaps in Dementia Care: Co-producing Culturally Appropriate Solutions with South Asian Communities

In the UK, 900,000 people live with dementia. This figure is set to exceed one million by 2040, with the sharpest increases expected among South Asian communities. However, dementia experiences among diverse South Asian communities remain poor, marked by inequalities in care, limited culturally relevant services, and underrepresentation in research. The EMPOWER Dementia Network+ was created to address inequalities in dementia by engaging underrepresented groups in shaping research, services, and policy. These include ethnically diverse groups, groups from socioeconomically deprived and rural areas, those living alone. and people with severe dementia and multiple conditions.

In its early stages, the Network has engaged over 120 people, including those living with dementia, carers, and community partners, to co-produce a vision for excellent and inclusive dementia care. Through this process, a critical gap emerged – the need for culturally tailored engagement strategies and resources for South Asian communities. This project aims to close that gap.

Establishing strong relationships is key to dismantling barriers and addressing long-standing inequalities in access to service provision, outcomes, and experiences of care. Through methods of inclusive co-production, our project will build trust and co-create culturally-appropriate engagement strategies and resources in collaboration with South Asian community groups across London and the West Midlands. Using these, the EMPOWER Dementia Network+ will then act as a platform to support these groups in contributing directly to the shaping of dementia care, research, and services.

To achieve this, a Community Advisory Board (CAB) will be established. An intersectional approach will be taken in building this group to ensure that it represents the diversity of cultures, genders, generations, and religions across South Asian groups. This group will steer the direction of the project, helping to adapt community engagement resources and strategies developed through the EMPOWER Dementia Network+ to ensure cultural relevance, accessibility, and effectiveness. They will also play a key role in helping to identify community-peer researchers who will act as bridges between the project team and local groups. Peer researchers will receive training to support them with the skills and confidence needed in using adapted resources with community groups. The final phase will pilot and refine resources through co-creation workshops with local community groups. Collating input from across these workshops, we will co-develop a shared vision of excellent dementia care from the perspectives of South Asian communities. By embedding cultural sensitivity into engagement strategies, the project ensures care and research moves beyond a one-size-fits-all approach. The long-term goal is to create a transferable model of inclusive co-production that strengthens trust and encourages the participation of underserved groups, establishing lasting pathways for inclusive dementia research, policy, and services.

“This project brings together researchers, grassroots groups, and people affected by dementia to co-create culturally relevant engagement strategies that support South Asian communities shaping dementia care and research. OKIF funding means we start to take meaningful steps toward addressing long-standing inequalities in dementia across these groups. We hope this work builds lasting trust, lays the foundations for more inclusive dementia care and research, and creates a model for inclusive research that centres the voices of underserved communities now and in the future.” – Dr Andy Bradshaw, EMPOWER Dementia Network Manager and Research Fellow

Expected Impact

The project aims to support a world where South Asian communities can access inclusive dementia care and actively shape research, services, and education. Bridging gaps will achieve this through:

  • Strengthening academic-community relationships through trust-building across King’s faculties, external partners, and community groups in London and the West Midlands.
  • Co-producing culturally appropriate resources to maximize engagement in dementia research, services, and education.
  • Increasing dementia awareness within South Asian communities.
  • Innovating co-production by identifying best practices for engaging South Asian groups in dementia research.

The long term aims of the project is to:

  • Expand the Bridging the gaps model across the EMPOWER Dementia Network+ to create a bold vision for inclusive dementia care and influence policy and practice.
  • Build capacity by training King’s students and supporting community-peer researchers while expanding our Network across the UK.
  • Developing a transferable model of inclusive co-production to inform future grant proposals and replicate this work for other ethnically diverse groups underrepresented in dementia care and research.

Partners and Collaborators

  • King’s Faculty of Nursing, Midwifery, and Palliative Care
  • King’s Institute of Psychiatry, Psychology & Neuroscience
  • King’s Faculty of Social Science and Public Policy
  • King’s Faculty of Life Sciences & Medicine
  • The Policy Institute
  • Satrang & DOSTIA (South Asian community dementia groups)
  • Manju Shahul-Hameed Foundation for Mental Health (Intergenerational Dementia Cafés across South London)
  • University of West London
  • University of Wolverhampton