Involving Black, Asian and minority ethnic communities in dementia research
The renewed effort at the moment to ‘engage’ with Black, Asian and minority ethnic communities on the impact of COVID19, although welcome in some senses, has not led me to rush towards the much heralded new dawn with rose tinted spectacles firmly glued in place. But I have history with these initiatives. It goes back to 2000 when I was the Equalities Lead Officer for Brent Social Services drawing up the first departmental Race Equality Plan in the wake of the Macpherson Report and also to 2005, leading a three year programme of work in one of the largest mental health Trusts in the UK to improve the experience of people from Black, Asian and minority communities in mental health services. I think we did some important and even groundbreaking work at those times but the waters came back and flowed over it with barely a ripple left to show for it.
I’ve written at length elsewhere about the need for researchers to rethink their assumptions about UK Black, Asian and minority ethnic communities and develop ongoing relationships with community organisations https://www.amazon.co.uk/Supporting-People-Dementia-Minority-Communities-ebook/dp/B07STXTZBB. Also, I continue to be convinced that we need to be moving on to building a bicycle not repeatedly reinventing the wheel. And we need the right tools to build the bicycle.
While double blind trails are the right tools for a pharmacological study and a sample survey is the right tool for market research neither is necessarily relevant for exploring social system dynamic issues like the experience of healthcare or the quality of life when living with dementia. This is about realising that asking the equivalent of “On a scale of 1 to 5, Mrs. Lincoln, what did you think of the play?”, may not be the best question at this time.
I was in conversation with a colleague of Caribbean heritage recently. We were exploring why on earth either of us still get involved in research when we have both been to enough conferences, special interest groups, workshops, high level forums, focus groups and whatnot over the years; to say pretty much the same things and have pretty much the same sense of making precisely zero impact. Regardless of whatever warm words and good intentions are expressed on the day. One doesn’t doubt the sincerity of either the words or the intentions, but the water floods back and the sandcastles disappear.
Researchers need to offer something more than the pablum that participating ‘contributes to the advancement of science’ because we can see that for those in Black, Asian and minority ethnic communities it does not. The Black Report (1980), the Acheson Enquiry (1998), and the Marmot Review (2010) have come and gone. Some excellent detailed studies of the experience of those in BAME communities living with dementia and their carers have been done in the last 20 years. The Policy Research Institute for Ethnicity and Ageing closed down although its many valuable reports remain on the internet https://www.priae.org/ apparently unread. COVID19 reminded us that even viruses discriminate by bearing down hardest on the most vulnerable socio-economic groups. Dementia does this too.
Researchers need to involve carers and people living with dementia from Black, Asian and minority ethnic communities from the get-go in the design and implementation of dementia research because this shapes the questions that the researchers might think to ask. They can’t know what they don’t know. Social and healthcare researchers need to be seen to have an investment in the wellbeing of the communities they are researching and have this investment linked to an outcome that identifies potential benefit to those communities. It’s not rocket science, it’s social science.
In the US you cannot get federal funding for research unless you demonstrate how the research study population will include involvement with minority ethnic populations. In the UK, where the 2011 Census put the proportion of those identifying themselves as from a minority ethnic background at around 15%, health research frequently reports participation rates as low as 2 or 3% for minority ethnic subjects, if they even monitor ethnicity at all.
I spent several months last year trying to develop a modest dementia conference supported by an independent research organisation only to have it flounder because key players in the research organisation could not see how co-designing and co-presenting the conference programme with a network of Black, Asian and ethnic minority communities added value to its research reputation. When you find yourself teaching Equalities 101 with these folk, it’s time to catch the next bus out of there. Very disappointing as for a long moment there I thought we could have done something that was the first of its kind in the UK in the dementia research arena.
The Dementia Alliance for Culture and Ethnicity (DACE) gets approached a lot to help source possible participants for dementia research from BAME communities. If these approaches came with some level of marketing budget this would better. This of course never happens.
We all need to explore more creative ways of encouraging community involvement. DACE with DDXN explored what dementia information BAME communities wanted in an online pilot study in 2018 ‘We Can Speak For Ourselves’ that you can find at https://www.demace.com/our-resources. 84.85 % of our 219 responders to the survey identified themselves as from a BAME background.
We have now created a research participation page on our website https://www.demace.com/get-involved-in-dementia-research where we will post information about dementia researchers who are inviting participation from members of the Black, Asian and minority ethnic community and also disseminate links to this page via our social media feeds. We will also post information about existing commitments that DACE has to ongoing research projects as these develop. DACE is prepared to use its imagination creatively to encourage participation and frankly challenge the research community, who have far greater resources than any BAME community organisation, to make the effort to do the same. Let's step up the game beyond leaflets in community languages.
We welcome contacts at firstname.lastname@example.org from community groups who want to get involved with dementia research and we will try to put you into contact with researchers who approach us. We are happy to act as an enabler and advocate of community organisations in these conversations if needed. We also would be happy to help disseminate any research that community groups have been involved in if they have articles, reports or video on the work and send them to us at email@example.com. We’ve done this to a limited extent with collating videos here https://www.demace.com/video-resources
Only a few in the research community have asked any of the profound questions that need to be asked about the scale and corrosive impact of dementia on the very vulnerable demographic that is the UK Black, Asian and minority ethnic communities or how much more severe and devasting this has been during the COVID 19 pandemic. More people should be asking these questions more assertively with the recent improvements in research funding. BAME families, community groups and faith organisations have been soaking up the pandemic impact for months now and the BAME community cost of this pandemic has been hidden behind closed doors. Will current research proposals bring more of this story into the light? One can only hope the tide has turned for a while.
David Truswell August 2020