Dementia and BME populations - Future research priorities

Dr Roiyah Saltus.jpg


Dr Roiyah Saltus, Principal Research Fellow at University of South Wales (USW) is the lead author on a report investigating the ways older people with Black, Asian and Minority Ethnic (BME) origins live with dementia, and how they and their families seek meaningful information and support pathways.

Entitled ‘Leave no-one behind’, the paper explores existing research on older BME people in Wales and makes recommendations for future dementia research priorities.

The report was commissioned by national equalities organisation, Diverse Cymru, and written in collaboration with Cardiff University.

Dementia is the broad term used to describe a number of different conditions affecting the brain, including Alzheimer's disease, vascular dementia, frontotemporal dementia, and more. Rooted in the wider context of societal inequalities and discrimination, the experiences of those from minority backgrounds experiencing dementia is often markedly different to white dementia patients. The significance of these differences is compounded as the UK’s ageing population becomes more diverse, as well as the effect the pandemic has had on health inequalities.

The paper identifies how BME people in the UK are more likely to develop certain dementias than white ethnic groups, but they’re much less likely to be diagnosed and get support. They are also under-represented in dementia research.

The report concludes by identifying ten vital priorities for future research:

  • Pathways to diagnosing BME people with dementia and their carers.
  • Capturing the experiences, and perceptions of care and support management from a range of perspectives, with a focus on those least seldom heard as meaningful as forms of evidence.
  • Capture the support provided by community and voluntary sector organisations, with a focus on BME-led groups.
  • Studies that focus on life in closed institutions such as hospital wards and care homes.
  • Exploring bilingualism in dementia care.
  •  Scoping and enhancing the competencies of key dementia services
  • Explore how best to embed and evaluate culturally informed personal care and support services e.g., personal grooming, diet, health activities, spirituality, leisure and social activities.
  • Effective dementia messaging to people from BME backgrounds
  • Participatory studies that focus on the Gypsy, Roma and Traveller communities in Wales.
  • Studies exploring how best to provide culturally appropriate end of life care.

 

Dr Saltus said: “An estimated 25,000 people of Black, Asian and Minority Ethnic (BME) origins live with dementia in the UK – a number which is expected to increase sevenfold by 2051. The fight for a myriad of effective information pathways, quick diagnosis, and person-centred care systems that address the health as well as psychosocial support requirements of those with dementia has long been a research, practice and policy priority. We need to build our understanding of how best to improve the lives of people living with dementia and their families and carers. Understanding the ways BME people living with dementia and their carers seek information, and how they experience the assessment process, and live with dementia is a critical step.”

The report is part of a long-standing University-Equalities Sector collaboration; Dr Saltus has conducted studies and co- written with Diverse Cymru colleagues for nearly two decades as part of her wider programme of research and collaborative work on a range of topics including the politics of immigration, the Windrush generation, and health and wellbeing in marginalised and migrant populations.

You can read the full report here: Leave no-one behind, which includes a comprehensive list of Diverse Cymru Resources and Publications.