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If dementia affects minoritised ethnic groups, why aren’t they participating or included in dementia research?
Dementia is a syndrome, meaning it's a collection of signs and symptoms that often appear together. It can result from various diseases, each contributing to the development of dementia in different ways. Research indicates that common risk factors for dementia may have a more significant effect on individuals from certain ethnic backgrounds. Given that dementia affects a diverse range of ethnicities, it's important to ask why these groups are often underrepresented in research.
To address this issue, we spoke with Dr. Natalie Marchant, an Associate Professor at the UCL Division of Psychiatry. She shares insights and recommendations on how to promote inclusive research practices in this field.
About Dr Natalie Marchant
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Beverley Isibor 00:09
Beverley, hello and welcome to the EDI Chronicles at brain sciences podcast. I'm your host. Beverley Isibor, the equality, diversity and inclusion coordinator at the Faculty of brain sciences. In this podcast, we sit down with an expert to learn about all the wonderful and impactful things happening in brain sciences, as well as higher education, more widely, in the equality, diversity and inclusion space, or you can say it as EDI space, so whether it's learning, working or researching, this podcast is dedicated for academics, professional staff, researchers and any curious people willing to learn about embedding EDI in their practice. In today's episode, we will explore the importance of inclusive participation in research with a specific focus on dementia research and its impact on society, we will discuss what inclusive research looks like in practice and how we can promote an inclusive research culture within academia. I'm not by myself here today. I'm in the recording studio with Dr Natalie Marchant. Natalie is an associate professor in the division of psychiatry and the chair of the UCL research culture community steering group. I am familiar with Natalie with her previous role as a director for EDI in the Division of psychiatry and a member of the EDI committee at brain sciences. So it's great to have this conversation with Natalie tulali, hello, Natalie.
Natalie Marchant 01:48
Hi. Beverley. Thank you so much for inviting me to speak with you and for that nice introduction.
Beverley Isibor 01:54
Oh, thank you. So I'm very happy to have you because you are our first guest on our first episode. So this is very, very exciting, and I can't wait to get into what we're going to speak about. So we are speaking about dementia research, and I want you to start from the beginning. What is dementia? My understanding is very limited. So it's a medical condition that affects everyday activities. That's the definition I can give to you. What would you say dementia is?
Natalie Marchant 02:30
So dementia, first of all, it's not a disease. It's actually a syndrome, which means that it's a cluster of signs and symptoms that tend to group together to form dementia. So it can be caused by a number of different diseases. Alzheimer's disease is the leading cause of dementia, and dementia can be recognized by it affects the brain, and it can be recognized in people who may be struggling to remember things, remember places and names, to remember where they are, to become increasingly confused. So beyond just memory, there can be difficulties in finding your way in new places, in struggling to find the right words or to understand things. I'm always very quick to point out that everyone forgets things. Sometimes. That doesn't mean Yes, yes, Queen of a game. It does not mean that you have or that you will develop dementia, phew. It's just if it happens quite frequently and getting more severe, then it's worth going to your doctor to get kind of a brain checkup to see how you're doing.
Beverley Isibor 04:00
So the myth that I had is it only occurs in older people, is there can you spot dementia quite early on?
Natalie Marchant 04:11
It primarily affects older people, but it can also affect people who are younger and people who develop dementia when they're younger, they often struggle to receive the correct diagnosis, because still, like you, many people don't appreciate that it can develop in younger people too.
Beverley Isibor 04:36
Okay, okay, that's very interesting to know. So I know you lecture about diverse perspectives in mental health research. How does your teaching align with dementia research?
Natalie Marchant 04:50
So I just talked a little bit about some of the symptoms of dementia. I also want to say that within the UK, it is the. Cause of death, so it's very prevalent, and actually it's life shortening from diverse perspectives in dementia, I'm really interested in the representation of people from minoritized ethnic backgrounds, so primarily black and South Asian backgrounds, so we know it has a high prevalence, and within those communities, they have a 20% higher risk of developing dementia, and they also have worse outcomes following a diagnosis of Dementia. So actually, they're diagnosed younger, and they die earlier, and they are not well represented in the research that we conduct. So that's a major problem in terms of us understanding dementia, the causes, potential treatments and ways that we can support people with dementia if we're not including those people in our research,
Beverley Isibor 06:05
of course, I can just imagine. So from an EDI perspective, what would you consider as the major barriers to what you've just mentioned about participation in dementia research, and how would you encourage researchers to overcome these barriers?
Natalie Marchant 06:20
That's a great question. I'm glad you asked that. I've recently conducted a study that has looked at the facilitators and barriers to participating in dementia research, both from the community perspective. So we were interviewing people from black and South Asian communities to ask them about why they might not participate in research, or what would help entice them to participate. And we also surveyed researchers about their barriers to conducting more inclusive research from that perspective, so from the community perspective, there was a lack of awareness about dementia, about what the symptoms are, how to recognize it. There was some stigma around mental health within these communities, so not wanting to kind of share that. And then also, I think there's some historical reasons why they may have a lack of trust of research and researchers valid. So we need to work on that. From the from the researcher perspective, there's generally pretty high acknowledgement that we're not doing well as researchers. People were saying that they had a lack of knowledge about how to approach people from these communities in culturally sensitive ways. We don't translate a lot of our work, so it's all in English, and particularly in the UK, with South Asian populations. People speak different languages, and so that's a barrier to them getting involved in our research. So we need to do better at translating what we're doing, and we need to have more community focused outreach, so not asking people to come to us, but actually going into people's communities, organizing events there, in places where they feel safe and comfortable, and saying we're going to come to you would go a really long way. So there are things that we can do, things that we can act on. We just need to do it.
Beverley Isibor 08:37
Yes, okay, I want to really piggyback off what you just said about trust in black and South Asian communities. So I've as a black woman myself. I witnessed during covid, I witnessed so many people mistrust the vaccine, and it came from a community perspectives in that, you know, the historical background of, you know, testing and the mistrust that comes from there, I didn't really understand it, because I've never encountered any form of research participation that I was afraid of. But could you flesh out why people in those communities may have high mistrust in that. Yes,
Natalie Marchant 09:25
there are some terrible historical stories of researchers and physicians conducting research on people from particularly black backgrounds without their knowledge, without their consent, and doing very harmful things. So one example from the States is the Tuskegee Airmen, where black men who served in the military were infected without their consent and not treated. To understand the effects on people, and there's many other examples like that, and so that, I think is historically within these communities that they would see generally white researchers or physicians using them as test cases. And I think this is a really, another really important aspect to us as researchers doing better, is we need to have increased diversity within our research teams. Yeah, an example from my own work is when I was calling these people from the communities and inviting them to to take part in my research, at least two of them said, what's your background, what's your what's your ethnic background? So
Beverley Isibor 10:54
they were curious about, yeah, where you're from, yeah. And then,
Natalie Marchant 10:58
and then, once I once, I said, you so I mix, I'm half black, I'm half white. Then they agreed to participate, yeah? And they actually, and they actually said that that that had an impact on whether they wanted to join into the research, because I think that helps build a level of trust that you know someone from our community just by looking like you. Yeah. Yeah.
Beverley Isibor 11:21
That's why they say representation matters. It does because you don't know what kind of rapport you'll build with people just based off the representation. So as a biracial woman, people saw you and instantly felt some form of trust in that they could participate in that research. That's incredible.
Natalie Marchant 11:44
Yeah, yeah, that's right. And actually, and with these interviews, I conducted them with people from the community helping to facilitate these interviews, so it wasn't sort of me as a researcher asking the questions. It was actually in collaboration with people from the community, helping to facilitate the conversation, which sort of fostered this feeling of safety and inclusion.
Beverley Isibor 12:13
Yeah, because if you're not familiar with a concept, you're not familiar with a certain condition, and someone's asking you to do research. It's kind of like, are you going to enter into this space blindfolded? Or, like, Give me something? Yeah. And personally, for me, I remember, I think I've done one research in Norway, and listen, I only went there because I was broke, and they said they were gonna give me 50 krona. So I was very charmed. I was a student, by the way, but I was comfortable, because they put so much emphasis in making sure that it was ethical. Yeah, they kept on asking me, do you consent? Do you consent to this? Do you consent to that? And I was like, I do. You're giving me money, not that that's why you should enter research, but as a student, it's true, I could have just had that big driver, yeah, it's an incentive. So now, as an adult, I obviously don't participate in research just for money, although an incentive does. You know, that's the whole reason why there's incentives, right? Yeah, but it gives you that I'm just trying to kind of circle it to the point whereby content and the ethics, I guess, of research is so important, hugely, so important. I know UCL take it very seriously, even when we do things such as surveys, we take it so seriously because we're collecting people's personal data, and we're going to utilize that to hopefully change things. So the importance of having that trust, especially when it involves conditions that have stigmas, and it's something that, as you said, something that people don't really want to speak about it
Natalie Marchant 14:01
was interesting, because we had these interviews in small groups, yes, and what a lot of people were saying is that they wanted other people from their community. They wanted to talk with other people about about dementia, who were from their community, because it's sort of behind closed walls and closed doors. And so actually, they enjoyed having these interviews and these focus groups because they knew the other people participating were going through something similar. So often they had a family member who had dementia, and it became quite a bonding thing, actually, and they said they wanted more opportunities to come together to talk about
Beverley Isibor 14:43
it. I can imagine why they said that, especially when you're coming from a perspective of similar experiences. So for example, I'm African, and I know that it's an African thing. They don't want to be older. People. Don't want to be put in a care home. Yeah, they don't. Want to be taken care they want to be taken care of from their family. They want their family to take care of them. So just that experience alone on how you part, like if you're getting somebody to participate in research and understand the different care that could be provided if it's a family member that's important in research, because, you know, if there's a gap, then how would that actually be identified? Yeah,
Natalie Marchant 15:24
absolutely, absolutely. Can I come back? Sort of circle back to the incentive and the and the payment for time, because I think that's also quite important, is that we compensate people for giving us their time. Yes, I think particularly in EDI work, it often falls on people who are from more minoritized backgrounds or marginalized backgrounds, and often in the research too. And so that was one thing we put front and center with the research that I was conducting is your time is very valuable, and we are going to compensate you for your time, for sharing your stories with us. And I think that's a really important thing for researchers to do, too, is to not expect people to do it for free.
Beverley Isibor 16:19
Free. Yeah, yeah, that's right, because time is valuable. Time is money. Okay, thank you for that. Um, are there any other, you know, points you would want to use to encourage researchers on how to overcome these barriers?
Natalie Marchant 16:39
Yes, actually, there was one thing I forgot to mention, so I'm glad you asked that. Thank you. This was a very strong theme that emerged from these interviews with these community members, is, I think we as researchers often take we take your information, we take your data, we take your time, and then we're going to analyze it and publish our papers. And you know, that's it, yeah, what the community members wanted, and what I think is really important if we're going to build trust and relationships with people from minoritized groups is to give back to these communities, so not just take so share the outcomes of the research. What's the impact of the research on their communities? Go back and give. And that's, I think that's a really important way forward.
Beverley Isibor 17:45
What would you say? Like? Give me an example of what given will look like.
Natalie Marchant 17:50
What I want to do if I can get some funding. So if there's any funders listening to the podcast, I want to organize community events where researchers go into the communities and share there's some amazing research and amazing findings going on. So we're talking about exercise being really good for our not only our physical health, but also our brain health. So go into these communities and organize some kinds of exercise activities, dancing, something like that. Yeah, exactly, you know, so, but also kind of culturally tailored things like that. Yes, there's been some amazing work with sleep, because that is often very sleep is affected by dementia, yes, and there's one of my colleagues, Penny Rappaport, has done some amazing work with helping to improve sleep for people who have dementia. So to go into those communities and share those findings, say, what can you do? Tell people that would be another way of giving back.
Beverley Isibor 18:59
Okay, that's such I like that. It's something I've never heard of when I only hear when a researcher does their research, just publish their paper. And I think somehow that is inaccessible for those that are not in the academic space. Exactly, I am not reading a 55 page Journal of what you found from the research, like, not everybody's gonna do that, yeah, so going back and giving back in the same breath of giving that information as this is what I found, is a very accessible way to reach those communities, yeah, and build that bond that okay, if they can find X, Y and Z from this information, I wonder what else they could find out. And I think increasingly, people are being more conscious of their health. People are being more aware of the different conditions that exist that could affect ethnic minorities. I can take, for example. Or type two diabetes. So this is what I really love about the NHS sometimes on the fact that they can concentrate on something that's affecting the community and really try and infiltrate themselves within those communities to ensure that, you know, people are more aware. I know quite a few friends and family members who have gone through a diabetes prevention program offered by the NHS for free, and it's been great because little things such as being aware that a can of tinned tomatoes has sugar in it. And we use tomatoes. Tin tomatoes a lot for I know, I didn't know that six grams. Oh, wow, yeah, it has sugar in it. And I learned that from the Diabetes Program. And I use tomatoes in stews. And stews are a very big staple cuisine in Black and Asian communities, curries and stews. So you can just imagine how many times people are, you know,
Natalie Marchant 21:10
inadvertently adding sugar, exactly, and
Beverley Isibor 21:13
it's such a tiny piece of information that can make a huge difference. Because now we don't use tint tomatoes in our house, actually, what do you use instead fresh tomatoes? They do the same job. And it made us realize that, oh, you can, you can have alternatives. And that's what I love about information like but they put the information that out there that is relatable, and I feel like that's and the people that actually deliver in these trainings, a lot of the times, yes, you see our white counterparts, but you also see black, Asian people also delivering this message, which makes it even more, you know, powerful and really powerful and related and insightful, because they are also from those backgrounds. They can understand, okay, you need to stop using eating too much. Jollof rice. You need to stop eating, you know, you have a certain portion. Yeah, mix it up with some veg, like they understand the food, so they can speak about it much better, exactly. So exactly. Again, it kind of piggies. Back to that point of having people in those spaces that could send out the message and also give back in their own way. Yes, they're doing it through their normal jobs, but at the same time, because of that diversity that exists on those people giving out the message, it's it. It kind of ACEs the goals of, you know, decreasing whatever they're trying to tackle.
Natalie Marchant 22:39
Yeah, yeah. That's, that's, that's great. I actually give me an idea, because in the dementia sphere, there's a lot of talk about the Mediterranean diet being very healthy. Yet, you know people from maybe South Asian backgrounds, as you're saying, more black African backgrounds. That's not part of their cuisine. Yeah. So if we can think about the nutrients that are found in the Mediterranean diet and then apply that to more culturally sensitive cuisines, that would be fantastic. And that would be another example of giving back to the community. Is saying this is a healthy way to eat, but in accordance with your kinds of the meals that you like to enjoy. Yes, you know, like,
Beverley Isibor 23:25
for example, in the Diabetes Prevention Program, they said, Yes, you can have Jollof rice, but add a bit of broccoli when you're having it exactly have more protein and have a smaller portion. And trust me, you will still feel the same sense of fullness, yeah, than you do if you had a big bowl of rice, yeah? Or if you don't want to have rice, swap it for brown rice or bulgur wheat, yeah? So you're including, um, you're having your staple food, but in different ways, and I think people should be exposed to that a bit more, and that's that's kind of bringing diverse perspectives into what you're trying to achieve. It's not only about physical diversity. What is the diversity of thoughts happening? Yeah, within the research and you know, how can we shape this to actually make it practical? Yes, for those that it on the receiving end, yes,
Natalie Marchant 24:21
I completely agree. Yeah. So lots of ideas, yeah, loads of ideas, right? Yeah, so much to do.
Beverley Isibor 24:29
I know I should be a researcher, so I would like to end the podcast with asking you this question. Is a magical question. So if you had a magic wand, what is one thing you will change about research. Be honest, just one thing, just one thing. Or if you have multiple. Oh, I have time.
Natalie Marchant 25:04
It's it's really hard actually, but I think job security would be up there. Would it would be a very important thing, particularly for people who are relatively early in their career. It is very difficult to get onto that academic ladder, and it comes with a lot of job insecurity after your PhD.
Beverley Isibor 25:32
So when you say job security, do you mean like fixed term contracts, or I
Natalie Marchant 25:36
would say so that a lot of so after you get your PhD, often people move on to what we call a postdoc or postdoctoral fellowship, and that they can last one year, two years, three years, and then you've got to be searching for another job, and when you're applying for funding, sometimes it can take a year from when You start putting together your idea, the application, to submitting it, to finding out whether you got it, success rates are very low. So there's a lot of stress and pressure on, am I gonna have a job next year? Yeah. And I think that that is very that affects everybody, and then, particularly if you are thinking about going into a career in research or academia and knowing that that is ahead, that is not very enticing to people, particularly if you don't have much money, you would rather go For a career path that is more secure, exactly. And so then we are starting to narrow down the perspectives of people who want to and can stay within academia. Oh, so
Beverley Isibor 26:52
it's kind of like they're two separate things, but they eventually come together just based off, you know, the situation at
Natalie Marchant 27:00
hand, yeah, absolutely, absolutely. And then that knock on effect is it's affecting our research, the type of research that we're doing, the people who are in that space, yeah. So society impacts, yeah, exactly, exactly 360 cycle, yeah, when you think about it, yeah, yeah. So I think that would be, if we could change that the consequences could be immense. Positive, yeah. Consequences could be immense. Yeah, because it
Beverley Isibor 27:31
makes me think about when I was doing work previously on the the life, the student life cycle of a black student, the student life cycle of black so, yeah, the student life cycle, yeah, of a black student. And it stops at master's level. Yeah. It doesn't after master's level, you're going into something that, as you said, more secure, probably a company, an institution, yeah, yeah, exactly. And I think when we piggyback back to our first point on diverse, diversity in research, this is what we're speaking about. Because then if people are opting to go to more secure places where you know taken away from what could contribute more positively in society and what we know about just like I like to reference covid, because I feel like as someone who's not a researcher, but I was every day on the news looking at what is the update on the vaccine, I can understand like, imagine if we didn't have diversity in those rooms on how can the vaccine impact black people, impact people who are autistic, or if those things were or if those conversations were not had in the research rooms, then would I get the vaccine or not, and I've never paid attention to research the way I did during covid. And it's because it was impact. I could see it impacting me. Obviously, other things impacted me as well, but these are things that I don't need to think about on a day to day basis. Whereas covid, yeah, you had to think about it was on your consciousness every two seconds, yeah.
Natalie Marchant 29:19
And I can give you an example of that is that I learned of this research study that where they really wanted to be inclusive, yes, and to include people from minoritized ethnic backgrounds. One of the measures that they were using was kind of a head, EEG, some a cap that needs to be put on, on your head. And then there's sort of little electrodes or that you have to need to be able to touch the scalp, okay? And I don't believe that there was, they had a. Member of their team, because with people who have hair like me, and I have my hair in small in small braids, for people who have weaves or wigs, it's not possible to do that. Yeah, but because somebody, there was no diverse perspective. So those people might not know that. Yeah, and so that's another sort of real world example of why it's so important to have people from with different lived experiences as part of the research team. Yeah,
Beverley Isibor 29:19
You had to think about it, it was on your consciousness every two seconds.
Natalie Marchant 29:48
Yeah. And I can give you an example of that is that I, I learned of this research study that where they really wanted to be inclusive. Yes. And, to include people from minoritized ethnic backgrounds. One of the measures that they were using was, kind of a head EEG. something like a cap that needs to be put on, on your head. And then there's sort of little electrodes that, that you have to, needs to be able to touch the scalp.
Beverley Isibor 29:54
Okay.
Natalie Marchant 29:56
and I don't believe that there was they had, a black member of their team because, with people who have hair like me and I have my hair in small, in small braids for people who have weaves or wigs, it's not possible to do that. Yeah, but because somebody, there was no diverse perspective. So they know these people might not know that.
Beverley Isibor 30:23
Yeah.
Natalie Marchant 30:24
and so that's another sort of real world example of, of why it's so important to have people from, with different lived experiences as part of the research team.
Beverley Isibor 30:34
Yeah, absolutely. I, I, I can if that was me, I can relate because I always change my hairstyles.
Natalie Marchant 30:43
I've noticed that but always looks good.
Beverley Isibor 30:46
Thank you. I try my best so I can just imagine, imagine getting into research and they discover that actually we can't really do it on your head because of, you know, the type of hair that you have. that, that could, you know, well, the huge gap that you should fill.
Natalie Marchant 31:07
Yeah, yeah. And, you know if you're trying to be inclusive, it's tricky.
Beverley Isibor 31:12
Yeah. Okay. So just one last thing. I think you, I know you focus on, minoritised ethnics, when it comes to, dementia research, are you including other protected characteristics such as disability? I was I attended an autistic awareness programme. and it was so interesting because they mentioned something about dementia. They said that there's not enough research on autism and dementia. So, what do you think?
Natalie Marchant 00:31:54
Yes. so I'm starting somewhere. Yeah. Which is with minoritized ethnic communities, because that's a little bit about something that I, that I know about. Yes. and then my hope is to then expand to other historically marginalized groups
Beverley Isibor 32:15
Yes.
Natalie Marchant 32:16
that we can use, some of the work that I've been doing, as a sort of a template. Yeah. As an approach to start. doing better and more inclusive research for other groups, too.
Beverley Isibor 32:29
That's great. Okay. That's really good. So we’ll keep our eyes peeled on that new work. yeah, I think that's really important. And I can't wait to hopefully see when that comes into fruition. So on that note, thank you, Natalie, for, this amazing conversation. I'm so happy to be in the space with you and have such an insightful talk about dementia research. I believe my for my first definition of dementia, I think I could expand on it a tad bit more. I'm not perfect, but I will come to you if I need to. But I really do appreciate you for coming to our first episode on The EDI Chronicles. it's been an honour.
Natalie Marchant 33:14
Yeah. Thank you so much. I, I really feel honoured to be your first guest.
Beverley Isibor 33:18
And this is a pleasure. It is bright, your bright, your research is bright. and it's going to be, hopefully a good couple of episodes after this. we can talk more about embedding EDI in learning, working and researching at UCL and more widely. Thank you for joining us on the EDI Chronicles at Brain Sciences podcast. I'm your host, Beverly Isabelle, and I hope you join us next time. Thank you.