Subitha Baghirathan of the University of the West of England, was the Research Associate for the recent BME dementia report. Here she records some of her experiences preparing the report, and lists some of the key findings.

Let’s start with a pat on our collective backs! Bristol has proved itself ahead of the game: the city is beginning to consider how dementia affects groups of people under-represented in current diagnosis figures, such as Black, Asian and other minority ethnic (BME) people. There is still relatively little known in the UK, about how dementia is understood and experienced by people of BME origins. The time to start talking about this topic is now, as the number of BME people with dementia is predicted to increase seven-fold up to 2051, in contrast to a two-fold increase in the same period of white British people with dementia. And this is exactly what we are doing here and now in Bristol.

Bristol City Council/Public Health funded University of the West of England (UWE) to carry out an eight month qualitative research study on dementia, to hear from Caribbean, Chinese and South Asian people in Bristol. I was recruited in Feb. 2016 as the Researcher on this study - an opportunity I seized with a feeling of privilege as well as some anxiety. The short timescale of the study felt pressured and the groups of people I wanted to hear from are often (mis) labelled with surface-level epithets such as being ‘hard to reach’, plus the topic of dementia is generally seen to be imbued with stigma across all communities in UK.

I have been supervised throughout this study by Dr. Richard Cheston, Professor of Dementia Research at UWE. He has carried the responsibility of keeping track of me, as I cycled around central Bristol areas to make contact with research participants: spending a couple of evenings in a local Gurdwara and illuminating afternoons in barbers’ shops in Easton and St Paul’s. We carried out the study on behalf of the ‘BME people and dementia research’ Steering Group, whose members include Rosa Hui of Bristol and Avon Chinese Women’s Group (BACWG); Anndeloris Chacon of Bristol Black Carers; Paula Shears of Alzheimer’s Society and Bristol Dementia Wellbeing Service; Katie Currie of Bristol City Council/Public Health; as well as UWE.  With the support of committed and active partners from the Steering Group and others such as Dhek Bhal, Golden Agers and Colliers Gardens (Brunelcare), I carried out 48 one-to-one interviews and held 8 Focus Groups, to hear from people from the 3 targetted BME communities, between April and August last year. This included hearing from people with concerns about their own dementia-like symptoms; family members/carers; and staff and volunteers from BME-led voluntary and community sector (vcs) organisations which particularly support older people.

The numbers of people who came forward to contribute to this study in that pressured short time-frame, takes up clippers and shaves off (I spent time in barbers’ shops, remember!) the assertions that BME people are generally ‘hard to reach’. This label is sometimes used with regards people of BME origins being participants in research; even more so if the research is about a health condition such as dementia which often has no direct translation into other languages. I am not claiming single-handed success: the recruitment of research participants was largely made possible through our industrious and committed BME-led vcs partners, as well as the flexible approach our Steering Group endorsed.

To find out more details about my approaches and methods to try to encourage participation in this research study, I recommend you go to the PHWE (People in Health West of England) website to their Case Studies’ section, where I have contributed a case study solely on this subject.

On Monday the 20th February 2017, our research report was launched to the public at an event organised by BACWG at City Hall. The launch was opened by Mayor Marvin Rees, with a key note speech by Lord Hunt of Kings Heath, who has an interest in health and ageing which he follows through by involvement on national, strategic bodies on these topics. The atmosphere at the launch event felt dynamic and inclusive: with many leaders of our BME-led vcs partner organisations there accompanied by their members, sitting alongside key commissioners and mainstream dementia service deliverers, such Bristol Clinical Commissioning Group, Bristol Dementia Wellbeing Service and the Big Lottery Fund.

Some of our findings and recommendations;

  • Understandings of dementia and its potential range of symptoms varied within and between each of these 3 BME communities. For instance, for someone with English as an additional language, a symptom of dementia might be that she/he loses their English fluency and starts preferring to speak their mother tongue all the time; or they may begin to find it harder to remember the order of prayers in their religious practice.
  • There was also a lack of knowledge about dementia risk factors, such as diabetes and stroke. There doesn’t seem to have yet been a concerted programme of sharing knowledge with BME communities about dementia risk factors, despite the fact that diabetes and stroke are more prevalent amongst Caribbean and South Asian people than people of other ethnic origins. Everyone who participated in the research strongly asked for more information on this subject which is included in the ‘Recommendations for actions’ of the report
  • There was more candour in sharing information with me about a diabetes diagnosis or experience of stroke than in talking about dementia. Hopefully, as a result of this research study, people can begin to talk about dementia in a similar matter-of-fact way, accepting it is a health condition
  • Older people of BME origins who were part of the research study said they preferred to get support, advice, signposting etc. from BME-led vcs organisations that they were often already members of, such as Evergreens or Asian Elderly Day Centre
  • The staff and volunteers running these organisations were all aware of the increasing and diverse health needs of their members, including dementia. They were not shy to talk about this and asked for further training and partnership working with mainstream dementia services to improve their skills and confidence. This point is another ‘recommendation for action’
  • Family members give huge amounts of care and support to other members with health conditions including dementia. More availability of respite care, day centres and residential homes which are culturally aware and sensitive to BME people would not only support BME people with dementia better- enabling them to stay away from hospital- but also make it more possible for family carers to accept these services and not get to crisis point, which can result in the deterioration of their own health and/or their social isolation.

For further information on the work of the ‘BME people and dementia research’ study: contact Subitha Baghirathan or Professor Richard Cheston at UWE (0117 328 8927).

The report and the 5 min. film which compliments it, are both available on the Bristol Dementia HIT website.