Putting Me Into Memory Services (PMIMS study) protocol: co-exploring dementia and ethnicity using Photovoice

Background Dementia is projected to rise steepest in racially minoritised communities; nearly six times the UK average. Understanding of disparities is limited due to research under-representation, however evidence suggests racially minoritised people experience delayed diagnoses, more often in crisis situations, and die younger. Aim To explore cultural understandings of ageing and dementia, and barriers/enablers to healthcare access for family-carers of racially minoritised people with memory problems. Generate community-led intervention ideas to improve access/uptake. Design & Setting Scoping review of UK literature 2) Qualitative Photovoice (participatory action research) focus groups with family-carers of people with memory concerns from Chinese, Caribbean and South Asian communities in Sheffield 3) Co-design workshops with community leaders on intervention prototypes. Method Scoping review of barriers/enablers and existing interventions. Photovoice methodology: purposive recruitment of 24 family-carers (8/community) supporting those aged≥65 with memory concerns; diverse in gender, age and language. Eight-week data collection culminating in focus groups co-facilitated and interpreted by bilingual community research link workers, transcribed verbatim, and independently thematically analysed. Photo-exhibition for public and policy-makers. Stakeholder workshop with community leaders to co-design intervention prototypes. Conclusion Despite steeply rising dementia rates in racially minoritised communities, inequity persists in service access/uptake. Little is understood about cultural influences effecting engagement with dementia care and no formal intervention development tackling racial inequity has been published. This work will increase knowledge on cultural nuances and structural discrimination impacting families living with dementia and consider new approaches.