The University of Salford’s Institute for Dementia has found that more needs to be done to support people from diverse communities living with dementia, including Black Minority Ethnic (BME) and deaf people.
It is estimated there are currently 25,000 people with dementia from BME communities in England and Wales and this figure is expected to grow to 50,000 by 2026 and 172,000 by 2051. Certain types of dementia may be more prevalent among BME communities since risk factors, such as high blood pressure, diabetes, hypertension and high cholesterol, may be more common.
A listening event, led by Senior Lecturer in Social Policy, Dr Anya Ahmed, held earlier this year with healthcare professionals, Social Services, caregivers, volunteers, academics, service providers and people living with dementia, explored how services can respond to the diverse needs of BME communities while promoting inclusiveness.
The findings and topics points raised at the Listening Event were:
- BME and less heard communities may not recognise the term dementia;
- Participants suggested diverse communities are not hard to reach, instead they are easy to ignore;
- It is important to acknowledge that many of the barriers affecting people from BME and deaf communities also affect the wider population;
- Communication is an issue: people do not know who to contact to get help;
- There are issues around trust and fear of approaching GPs and other professionals;
- People may feel overwhelmed by the number of agencies that need to be dealt with;
- People may not always recognise that they are a carer and many people are not registered as carers by their GP;
- Services are Eurocentric and there is often a lack of knowledge among professionals of different cultures;
- There may be greater reluctance to come forward in some cultures, but we should not make stereotypical assumptions about BME groups always caring for family members;
- There is a stigma surrounding diagnosis. Many people were worried about getting negative perceptions from professionals;
- People from diverse backgrounds are not represented in local authorities and services;
- There is limited dialogue between minority communities and service;
- It was also widely accepted that cuts to spending on services has made this situation worse.
Quoted in the report, Professor Lord Patel of Bradford OBE, Vice President of the Royal Society for Public Health, said: “There is little known about diverse communities and dementia and the work of the Institute for Dementia at the University of Salford is playing a key part in beginning to fill some of the some of these important gaps in knowledge.”
Dr Ahmed is also working in partnership with the Somali Cultural Centre on the Somali Dementia Aware Project in Camden in London, as well as projects looking exploring the needs of diverse communities in Salford and life history in Greater Manchester.
Professor Maggie Pearson, Pro Vice Chancellor (Public Benefit) and Dean of the College of Health and Social Care, said: “Although colleagues from the black and minority ethnic communities have been crucial to the establishment and survival of the NHS, since its inception in 1948, the service has been ironically slow to acknowledge, understand and respond to their needs.
“The Salford Institute for Dementia will take this work forward to develop a more robust evidence base about the needs and preferences of people in BME communities who are affected by dementia, but the clear message from our work is that we must develop an agenda for health and social care services, no matter whether in the public, private or third sector.”