Bridging gaps in dementia care: Building trust through culturally appropriate community-based co-production with South Asian communities
Parallel 5
18 November, 2026 2:10 – 3:20 pmMusic, Culture and Media in Dementia Care
Andy Bradshaw
Research Fellow and Network Manager of EMPOWER Dementia Network+
King’s College London
Cllr Dr Manju Shahul-Hameed
Manju Shahul-Hameed Foundation for Mental Health
Summary
Background: In 2025, the EMPOWER Dementia Network+ engaged over 200 people affected by dementia to co-produce a vision of excellent, inclusive dementia care. We identified critical gaps including (i) limited perspectives from diverse South Asian communities, and (ii) a lack of culturally tailored and appropriate approaches to engagement. Community-based co-production offers a way of bridging these gaps. However, uncertainties exist in how to build trust and work equitably through co-production to understand priorities for culturally congruent, placed-based dementia care.
Aims: (i) to describe our approach to inclusive community-based co-production with South Asian Communities, and (ii) critically reflect on how trust can be built through community-based co-production to support culturally appropriate public engagement in shaping dementia care, research, and services.
Describing our approach: Our approach drew on community-based participatory research, working with South Asian community groups across Wolverhampton (DOSTIA) and Croydon (Manju-Shahul Hameed Foundation). It involved five steps:
(1) Establishing an 18-member Community Advisory Board (CAB) bringing together community partners, lived experts, researchers, and students from a diversity of South Asian cultures, languages, histories, generations, and lived experiences.
(2) Four in-person workshops to co-produce two locally tailored roadmaps for culturally appropriate public engagement that were aligned to the cultural and community contexts of each site, and test creative co-production methods. Trust-building was central to our approach. We developed trust through relationships grounded in equity, reciprocity, and fairness, hosting workshops in community spaces, shared leadership and decision-making with communities, and nurturing relationships based on shared interests beyond project delivery.
(3) Piloting creative methods to understand community need through co-production workshops with South Asian community groups (n=40; Wolverhampton=16, Croydon=24).
(4) Collating insights into a shared vision of high-quality, place-based dementia support.
(5) Critically reflecting on the value, challenges, and experiences of our approach as a CAB.
Critical reflections: Reflections showed our approach functioned as a ‘trust network’ where multiple forms of trust were critical to working in culturally appropriate, equitable ways. ‘Particularised’ trust (i.e., trust in people we know) developed within the CAB through repeated in-person workshops in community settings, enabling partners to meaningfully shape project direction and build confidence in researchers’ intentions. Community partners acted as ‘trust brokers’, enabling ‘proxy trust’ between researchers and communities with limited prior connection. This extended trust from familiar relationships to more ‘generalised’ trust (i.e., trust in people we do not know) with members of local community groups.
Conclusions and Implications: We have developed an innovative method of culturally appropriate community-based co-production that can be used to build trust with, redistribute power towards, and meaningfully engage South Asian communities. This approach is transferable and may be adapted by others seeking to involve underrepresented groups in ways that place people and communities affected by dementia at the heart of research, service, and policy development.