Dementia and ethnicity — partnering with community organisations to co-produce research priorities and study design exploring access to dementia services for ethnic minority patients

Background Dementia is a rapidly growing problem projected to rise steepest in ethnic minority communities; nearly 600% over 40 years compared to the UK population. Despite this, patients from ethnic minorities are referred less to memory clinics, diagnosed at more advanced stages, and present more often in crisis.

Aim To complete extensive patient and public involvement and engagement (PPIE) work and build academic–community partnerships to prioritise research questions and co-design a study exploring dementia and ethnicity.

Method Collaborative partnerships formed with Shipshape (South Asian), SACMHA (African and Caribbean) and Lai Yin (Chinese) community organisations and PPIE with >80 people.

Shipshape Men’s Club for elders with memory problems.

Consultation meeting with SACMHA staff and home visits to African Caribbean house-bound elders.

Deep End Research Alliance Dementia workshop.

Carers event co-organised by Shipshape and Lai Yin.

Results Community and patient: no word for dementia in several languages; dementia under-diagnosed and seen by some as unnecessary biomedical/western label and over-medicalisation; families function as single units rather than individuals and younger generations accommodate for memory problems, concealing dementia; and communities prioritise physical health over dementia and their link is under-recognised.

Research and health services: dementia services not culturally competent or appropriate; all communities complained about ‘parachute’ academics; tangible action needed rather than perpetually re-visiting the ‘problem’; and acronyms and phrases such as ‘hard-to-reach’ were unpopular. Lack of consensus on preferred terminology.

Conclusion Participatory action research project using Photovoice qualitative methodology was co-designed with communities. Stakeholders to co-produce complex intervention prototype seeking to improve dementia services for ethnic minority communities.