Racism and Dementia: A Q&A With Caribbean Neuroscientist Indira Turney

By | August 16th, 2023

Dementia advocate Rianna Patterson interviews Columbia University dementia researcher Dr. Indira Turney about the disproportionate brain health risks for Black and brown Americans — and what lifestyle has to do with it.

This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.

Dr. Indira Turney was born in the Caribbean, in the Commonwealth of Dominica. When she was nine or 10 years old, she remembers coming home from school one day to find that her grandmother suddenly didn’t know who she was. Watching her grandmother experience dementia inspired an interest in studying the brain, brain aging, and brain health. What causes decline? And what can protect us from it? But Turney soon realized that these questions are very much tied up in race, and in lifestyle, and in the complex relationship between the two.

“I never saw my grandmother with a job aside from working the farm,” Turney recalls. “How did they take care of 15 kids? I think four of them died at childbirth, but that’s still 11 kids that she had to raise with my grandfather.” Today, her work focuses on stressors and what long-term impacts these have on brain aging, brain shrinkage and dementia risk. This, she says, is the weathering hypothesis.

”My work focuses a lot on the weathering hypothesis — the wear and tear on the body over time, that is more prevalent in Black and brown people where there [are] physical stressors — or, any stressors,” she said. “Outside of my grandmother’s seemingly healthy lifestyle, there are other things happening disproportionately to her that are wearing and tearing on the body that eventually deteriorates the brain function.”

Turney’s interest in the field unfurled and deepened over time, with the guidance of mentors along the way, she said. She moved to St. Croix at the age of 13, attended the St. Croix Educational Complex High School, and later graduated from the University of the Virgin Islands with a Bachelor’s degree in psychology. She went on to earn her Ph.D. in cognitive neuroscience at Pennsylvania State University in 2018.

Today, she’s based in Harlem, New York City, where she’s an associate research scientist in neurology at Columbia University Medical Center, looking at disparities in brain aging, with the end goal of identifying better ways to detect, diagnose, and improve treatment for people at risk for Alzheimer’s disease and other kinds of dementia.

In her research, Turney uses MRI brain scans to examine aspects of brain structure, such as the volume or the thickness of the brain’s cortex, and to aging-related abnormalities like white matter “hyper-intensities” and build-ups of dementia’s biomarkers, like beta-amyloid plaques and tau protein tangles.

“A lot of these things that are affecting our brain health can be avoided,” she told Being Patient. “It’s not like ‘You’re doomed, because you’re older: You have to have terrible brain aging.'”

Her experience with her grandmother first sparked her interest. Then, learning Black and brown Americans are at higher risk of dementia, she delved deeper into race-related risk factors. Today, she says, her work is done in pursuit of “general equal brain health for all people. […] Being able to generalize it to any group that’s at risk is the new drive.”

Rianna Patterson x Indira Turney dementia racism
Dementia advocate Rianna Patterson interviews Columbia University dementia researcher Dr. Indira Turney.

Here, documentary filmmaker and dementia advocate Rianna Patterson, who at age 18 founded the Dominica Dementia Foundation in memory of her grandfather, sits down with Turney to talk about brain aging, systemic racism as a dementia risk factor, and Turney’s own approach to research and to sharing her findings.

Rianna Patterson: What’s brain aging, and how does it factor into your research about race-based disparities in dementia risk?

Dr. Indira Turney:As you get older, the brain shrinks. It loses volume, for example. There’s a general expectation of how much volume you lose over time, as you get older.

And, your brain may develop more plaques and tangles.

Some people show accelerated shrinkage, or greater white matter hyperintensity volume (tiny strokes) in the brain earlier than expected, because of weathering and stress, etcetera. [There are also people for whom these circumstances lead to dementia or another neurodegenerative disease,] but it doesn’t always have to, which is why we really need to understand: We’re all going to age at some point, we’re all going to lose [brain] volume, we’re all going to lose thickness of the brain, we’re all going to develop these tiny little strokes… but it doesn’t always have to lead to dementia — and so, trying to understand when it does and when it doesn’t is important, so that we can figure out when to intervene, what are the specific lifestyle things [that could serve as protective factors]?

Patterson: I understand that you have personal experience of dementia for your grandmother, as well as your lecturers guiding you in this field. Do you mind sharing more about that?

Turney: Essentially, I got interested in this partly because my grandmother had dementia. I feel like it just happened randomly, but memory, as we know, is not a recorder. It felt like I came home from school one day — I was maybe nine, or 10 — and she just didn’t know who I was. And I was like, I’m your favorite granddaughter. How do you not remember me?

She had these memory issues for maybe a few weeks at a time. And back home, it’s always like “Somebody do something to you, they put some spell on you.’ And she actually went [to see a spiritual healer], and he told her something about somebody who wanted to put something on her, and he lifted the spell and made her do couple things, and strangely enough, she did have better cognition after that, for a while, but then, inevitably, it came back. And so over time, she was never back to her full self.

I do believe in some spiritual stuff. So I don’t know — I do think that worked… in some way. But the fact that she couldn’t go to a neurologist and get tested or trust what the doctors were saying about her memory issues is a testament to our community not trusting the doctors.

I saw how much she deteriorated overtime, and also the effects on the family, just having to go through that process. [I realized], I want to be a face that other Black and brown people can trust. I want to be a face that they can come to and say “You’re the one doing the research. So I trust you.” Because the research needs to be done in our community, so we can know how to help each other.

Patterson: What’s the focus of your research?

Turney: Some of my work actually focused on resources in the household during childhood as well as adulthood. It’s funny because I’ve never actually made the link [to my grandmother] until just now. But to see how these things affect your brain development, and then also just thinking about my experience growing up. I was born premature to like my mom who was 15. I grew up extremely poor. There were times I went without food. How [do] those things affect [brain health]? All those things that happened before birth, during birth, during childhood — how do those things affect brain health?. Another aspect [of this] I study [is] resilience. How do you build resilience that despite my childhood, I’m still here somehow? What are those protective factors? Is it education? I also study a lot of midlife adults — people as young as 25 through 65 — looking at: What are the factors that affect [or possibly protect brain health] then, versus waiting until you’re too old [to build resilience]?  

“I was born premature to my mom who was 15.
I grew up extremely poor. There were times I
went without food. How do those
things affect brain health?”

We don’t choose what we are born into, but especially in [the United States of] America, Black people are born into not the best situations. But knowing that we can recover from that in adulthood is encouraging versus, for some people, especially white people — again, this is all preliminary stuff, showing that for white people, childhood is more important, but they often born into more privileged homes into more privileged opportunity. And there’s even some work showing that the amount of money that a white child is born into determines the trajectory of their life: whether you’ve got to have money for a house, to pay to college, all that stuff. [There’s research showing that] all of those things — having a home, the neighborhood you choose, the environment [around] your neighborhood, being able to get a college education — are protective factors in adulthood that most white people born into, versus for Black people.

Somehow we still strive, and we still get up there, and we’re still able to recuperate from that. So that’s encouraging news. It’s not confirmed yet, but those are the things I try to understand: Despite what we’re born into, can we recover and still have a healthy life?  

Patterson: Working in this field, what’s the most influential thing you’ve learned about Alzheimer’s research that has shaped your practice when conducting research with African and Caribbean communities?

Turney: In grad school, I did more general brain processing. And as a postdoc, I started doing research on more diverse groups of people. And through that process, I’ve learned that Black and brown people are at greater risk for dementia.

And also, how I go about the research is different. For example, when you’re looking at white people, researchers tend to focus on genetics, versus for black and brown people, it’s more about the life course factors that tend to have a bigger driving force on what affects our brain health.

Learning that (1) Black and brown people are at higher risk for dementia, and (2) learning about the different lifestyle factors that can be malleable, that can be changed to have better brain health, and knowing how much of an impact your lifestyle has on your brain health.

It’s not just because I’m Black [that] I have worse brain aging compared to a white person, but because of the lifestyle afforded to me, especially in America where most things are racially-patterned. Where I live, the foods that I eat, the things I have access to, the lack of access to healthcare. All of these factors influence brain health.

The brain is universal, everyone has a similar amount of neurons and whatnot. The basic things are universal. But understanding how your lifestyle affects your brain is so different across groups of people and being able to study has been really fascinating for me, because it gives us a seat at the table.

“It’s not just because I’m Black [that] I have
worse brain aging compared to a white person,
but because of the lifestyle afforded to me,
especially in America: where
I live, the foods that I eat, the things
I have access to, the lack
of access to healthcare. All of
these factors influence brain health”

If we’re the ones being more affected by dementia, but then we’re often excluded from the studies, whether it’s the people doing the research, but also, more importantly, the people participating, because most Black and brown people are not participating in research given the history of science and experimenting on us — which is understandable.

I think the things I’ve learned is one, just being able to see that there are such big differences across brain health across groups of people, especially by race and ethnicity. But that’s just one risk factor, or one, not even a risk factor, because your race is not a risk factor. But the lifestyle that comes with your race or ethnicity in this country is a risk factor. So just being able to know that and knowing that a lot of the reasons why there’s no cure for Alzheimer’s is because well, the people who are most affected are not the ones being studied. My work is focused on diverse midlife and older adults and increasing participation of those individuals within the realm of brain research.

Patterson: Understandable, and I completely agree: I think lifestyle has a lot to do with it. A lot of people in our community are very much overworked. And then when they get the chance to retire, they just retire. It’s just unfortunate, because the brain evolves into a working brain, and then when it’s [suddenly] not working, it does not compute.

Turney: Right. It’s really interesting. For example, [doctors or researchers] may say “Exercise helps the brain, so, let’s encourage people to exercise.” But to tie into your [point,] I can’t just tell a Black person “Just exercise, and that helps,” right? Because then you have to account for the neighborhood they live in. Is it walkable? Can they afford to go to the gym? [There are] just so many other things that go into these lifestyle habits that people don’t think about often when they’re in the lab, and they’re just prescribing these generic things to people — but that’s because most of the people they’ve studied are not representative of the general population.

So, yes, exercise is important and will influence the brain, but some people can’t do it, because of lifestyle. And it’s [not just individual factors that affect] lifestyle, it’s the environment and society.

“I can’t just tell a Black person ‘Just exercise,
and that helps,’ right? Because then you
have to account for the neighborhood
they live in. Is it walkable? Can they
afford to go to the gym?”

If you have, say, hypertension, or any kind of illness, on average, the average person may be able to take certain medication, and that helps. But then a Black or brown person is less likely to have insurance [and more likely to face discrimination at a doctor’s office.] There are just so many barriers to having a healthy lifestyle, to promote healthy brain aging.

It’s disheartening to think of that we have to fight so hard just to have working healthy brains, you know, because society has so many barriers towards that. I wish it was more equitable.

Patterson: I know you do a lot of conferences and public speaking. Are you quite intentional when it comes to the communities that you’re speaking with, as a way of disseminating your findings? And, how are you motivating the community to partake in your research?

Turney: Definitely. In general, I wish I really did way more dissemination to the general community, because I do a lot of conferences, but I’m just talking to other scientists, right? There are other scientists that may not know about brain health disparities, as well as people who do, but they’re all scientists. The goal is that it hopefully influences their work in some way.

When I speak about my work, I try to encourage other people to understand that understanding these lifestyle factors — and the individual things that affect brain health, in general — should be considered in their work as well.

[I’m] trying to also encourage other scientists and people within that realm to understand that you also have to understand the factors that influence someone’s brain health may depend on their race, sex and other identities.

In these communities, we do some outreach. I do go into the community and speak to older adults, especially about things like, just general brain health. As you probably can imagine, I can’t do that very regularly, because it does take some time. But I do love what I do. I used to hate public speaking. And I think through my work, I’ve loved public speaking because the thrill I get from just like talking to these older adults about their brain health, and the things that can help, and seeing how much they appreciate it and even in some cases, implementing it.

I try to do those maybe once every other month or so. I wish I could do it more often.

I also wish I could do more online (via social media). Now we’re in such a social media world, and I was excited to share with people, but also [you have to be] aware, when you put that information out there, how it’s received. How can I put this information in a 15 second video without people feeling like they’re doomed? Because if you hear that some people’s brains age faster than others, Black people compared to white, it’s not just because you’re Black that your brain is aging faster: it is because of the environment, it is because of lifestyle [factors] that [are] often out of your control.

It’s not like “Just because you’re Black, you’re doomed.” I can’t say all of that [in a social media post]. So what I’m currently trying to do is think of ways to encourage people about the exciting work that’s happening. We’re understanding more about diverse brains — and also realizing that there’s so much more work to be done.

At age 18, film director and dementia advocate Rianna Patterson founded the Dominica Dementia Foundation in memory of her grandfather who passed away with Dementia in Dominica. Find her on Twitter at @riannapatterson.

Alexandra Marvar is a freelance writer for The New York Times, Smithsonian, The Believer and elsewhere, and the managing editor of Being Patient.

CORRECTIONS, 17 August 2023, 11:34 A.M. ET: Corrections were made to details in Dr. Turney’s biographical information: She attended the St. Croix Educational Complex High School, not St. Croix University. She’s an an associate research scientist in neurology at Columbia University Medical Center, not simply a “postdoc.” She moved to St. Croix when she was 13, not 14. Grammatical edits to Dr. Turney’s interview questions have been made for clarity.

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