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Speaker 1: Welcome to the Therapy for Black Girls Podcast, a weekly

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Speaker 1: conversation about mental health, personal development, and all the small

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Speaker 1: decisions we can make to become the best possible versions

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Speaker 1: of ourselves. I'm your host, doctor joy hard and Bradford,

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Speaker 1: a licensed psychologist in Atlanta, Georgia. For more information or

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Speaker 1: to find a therapist in your area, visit our website

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Speaker 1: at Therapy for Blackgirls dot com. While I hope you

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Speaker 1: love listening to and learning from the podcast, it is

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Speaker 1: not meant to be a substitute for a relationship with

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Speaker 1: a licensed mental health professional. Hey, y'all, thanks so much

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Speaker 1: for joining me for session three eighty two of the

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Speaker 1: Therapy for Black Girls Podcast. We'll get right into our

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Speaker 1: conversation afterword from our sponsors.

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Speaker 2: Hi.

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Speaker 3: I'm doctor Lisa Barnes, and I'm on the Therapy for

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Speaker 3: Black Girls podcast. I'm in session today unpacking my research

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Speaker 3: on Alzheimer's disease.

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Speaker 1: The idea of getting older and slowly losing our memory

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Speaker 1: of everything and everyone around us is something that can

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Speaker 1: cause lots of dread and anxiety. Beyond the sensationalized depictions

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Speaker 1: and shows such as Gray's Anatomy, let's explore the real

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Speaker 1: impact of Alzheimer's disease and how it can affect our

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Speaker 1: families and loved ones. Joining me for this important conversation

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Speaker 1: is cognitive neuropsychologist and Associate director of the RUSH Alzheimer's

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Speaker 1: Disease Research Center, doctor Lisa L. Burns. Doctor Barnes has

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Speaker 1: published over three hundred manuscripts, received many NIH grants, and

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Speaker 1: is the pre unimple investigator of two longitudinal community based

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Speaker 1: studies of older African Americans. During our conversation, we discussed

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Speaker 1: the common symptoms and presentations of Alzheimer's, the link between

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Speaker 1: Alzheimer's in traumatic stress, and the importance of including black

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Speaker 1: folks in clinical trials when studying various medical interventions for Alzheimer's.

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Speaker 1: If something resonates with you while enjoying our conversation, please

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Speaker 1: share with us on social media using the hashtag TVG

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Speaker 1: in Session or join us over in the sister circles

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Speaker 1: to talk more about the episode. You can join us

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Speaker 1: at community dot therapy for Blackgirls dot Com. Here's our conversation,

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Speaker 1: but thank you so much for joining us today, Doctor Vornes.

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Speaker 2: Thank you for having me.

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Speaker 1: Yeah honor to get a chance to chat with you.

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Speaker 1: So you have had an incredible career over the past

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Speaker 1: twenty years. You've been doing a lot of research on

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Speaker 1: black people in Alzheimer's. Can you talk a little bit

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Speaker 1: about how you got interested in that area of research.

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Speaker 3: Yes, So I went to school for psychology. I wanted

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Speaker 3: to be a psychologist. Actually, at first I wanted to

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Speaker 3: be a neurosurgeon, but I worked in a hospital for

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Speaker 3: the summer internship and discovered that I did not really

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Speaker 3: like that part of medicine, and so I decided because

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Speaker 3: I really had a strong interest in the brain and

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Speaker 3: understanding memory. Memory has always been such a fascinating topic

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Speaker 3: for me since I was a really young kid, and

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Speaker 3: so because I knew I could not really pull off

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Speaker 3: being a neurosurgeon, I decided I still could make a

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Speaker 3: contribution by studying the brain. Right, So I went to

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Speaker 3: grad school to get my degree in biopsychology, and that

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Speaker 3: allowed me to put together the biology that I really

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Speaker 3: found interesting. With the psychology studying human behavior, but biopsychology

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Speaker 3: was focused on.

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Speaker 2: How the brain controls behavior.

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Speaker 3: I did that and I really learned a lot about

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Speaker 3: the brain and about how the brain controls memory. And

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Speaker 3: then I had an internship in college actually where I

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Speaker 3: got to work with this famous patient. His name was

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Speaker 3: Hm and he had this experimental surgery where they removed

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Speaker 3: the parts of his brain that's important for memory, and

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Speaker 3: he could not remember anything. And I worked with him

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Speaker 3: for like over a summer, and it just really solidified

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Speaker 3: my interest in memory, because this was a man who

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Speaker 3: did not have parts of his brain called the hippocampus,

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Speaker 3: and all of a sudden he couldn't remember anything, make

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Speaker 3: no new memories, and this was like for several years

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Speaker 3: of his life. And so just really being able to

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Speaker 3: understand how you can remove a part of the brain

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Speaker 3: and then you're not able to function in a way

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Speaker 3: that other people function. That was just fascinating to me.

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Speaker 3: So that sort of sparked my interests even more. And

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Speaker 3: then I went on to get into the field of

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Speaker 3: Alzheimer's disease.

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Speaker 1: God it So, can you explain to us what exactly

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Speaker 1: is Alzheimer's and what are some of the more typical presentations.

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Speaker 3: Yeah. So, Alzheimer's disease is a disease of the brain.

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Speaker 3: It's characterized by a loss of memory and thinking skills.

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Speaker 3: So it's a progressive neurodegenerative disease where people initially usually

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Speaker 3: present with a loss of memory, but over time, as

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Speaker 3: the disease progresses, you have many more clinical manifestations than

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Speaker 3: just cognition. And so some of the typical changes that

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Speaker 3: you see in a person with Alzheimer's memory loss is

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Speaker 3: the number one that's a hallmark clinical feature. But then

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Speaker 3: you also might see a lot of personality changes, right,

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Speaker 3: so the person might get upset, worried, and angry, angrier

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Speaker 3: than they usually get. Like a person who's really calm

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Speaker 3: might turn to be this really like, easily upset, frustrated person,

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Speaker 3: or could go the opposite way, someone who's tip really

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Speaker 3: mean and upset all the time. It could totally change

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Speaker 3: and become this nice, really laid back person. You might

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Speaker 3: see depression a lot, so they're not interested in the

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Speaker 3: things that they used to be interested in. You might

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Speaker 3: notice that they start hiding things or believe that people

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Speaker 3: are hiding things from them, or they might have hallucinations

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Speaker 3: or imagine that things are there they're not actually there.

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Speaker 3: We see a lot of wandering people get lost a

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Speaker 3: lot with this disease. You might even see some physical

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Speaker 3: changes where people are hitting physical violence type things, or

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Speaker 3: people start hitting you and just being more combative, and

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Speaker 3: I think as the disease progresses, we do see that

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Speaker 3: people sort of stop caring about how they look, or

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Speaker 3: they might stop bathing, they might want to wear the

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Speaker 3: same clothes every day. So you see those kinds of changes,

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Speaker 3: and it really varies from person to person. You're not

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Speaker 3: ever going to find one behavioral sin or one type

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Speaker 3: of behavior that is the same for every person. It

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Speaker 3: really varies from person to person.

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Speaker 1: And doctor Barnes, where are we seeing impairment in the

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Speaker 1: brain for Alzheimer's, So you mentioned like the hippocampus is

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Speaker 1: important for memory. Where in the brain we're seeing some

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Speaker 1: changes with Alzheimer's.

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Speaker 3: Yeah, that's a great question, because in Alzheimer's, the damage

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Speaker 3: is widespread throughout the brain. If you think about the

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Speaker 3: temporal progression, it does seem to occur first in the

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Speaker 3: temporal cortex, which is, you know, the area right behind

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Speaker 3: your ear, around your ears, and that's where the hippocampus is,

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Speaker 3: and so we see the changes happening there first. But

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Speaker 3: because of the type of damage in Alzheimer's disease, it's

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Speaker 3: really all over the brain. And so as researchers, though

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Speaker 3: we do tend to focus in more on the temporal

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Speaker 3: lobes where we know the hippocampus is and the seed

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Speaker 3: of memory, but also the frontal lobes right where there's

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Speaker 3: more higher order thinking. But in Alzheimer's disease, you see

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Speaker 3: it all over because there's two main pathologies that we

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Speaker 3: see in this disease. And people may have heard about

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Speaker 3: plaques and tangles, right, So what it is, it's abnormal

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Speaker 3: build up of these proteins that are actually normally in

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Speaker 3: our brain, but through different chemical processing, something happens to

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Speaker 3: make these proteins build up either between the neurons, which

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Speaker 3: we call the amyloid plaques, or inside the neurons, which

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Speaker 3: are the tangles. So you might hear plaques and tangles

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Speaker 3: we call the tangles TAEL. So right now we know

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Speaker 3: that the disease is primarily caused by this amyloid and

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Speaker 3: tael build up in the brain, but there's a lot

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Speaker 3: of other things happening in the brain as you progress

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Speaker 3: with the disease.

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Speaker 1: Got it, And can you say a little bit about

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Speaker 1: what we know now, because I'm sure the research is ongoing.

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Speaker 1: What are some of the things that might lead to

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Speaker 1: somebody getting diagnosed with time?

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Speaker 2: It is a disease.

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Speaker 3: The sad thing about this disease is that we really

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Speaker 3: don't know what causes it yet.

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Speaker 2: Right. We know that the number one.

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Speaker 3: Risk factor is age, So definitely as people get older.

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Speaker 2: Their risks increase for the disease.

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Speaker 3: So people over the age of sixty five, I would

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Speaker 3: say maybe about ten percent will have the disease, but

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Speaker 3: by the time you get to eighty five, it's almost

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Speaker 3: fifty percent. So if you know you have two people

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Speaker 3: over the age of eighty five, one of them will

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Speaker 3: have the disease.

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Speaker 2: And so we don't know though, is it.

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Speaker 3: Getting older that's actually the risk factor or something associated

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Speaker 3: with getting older? Right. We also know that there are

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Speaker 3: some genetic markers that tend to increase your risk. It's

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Speaker 3: not like if you have these markers you will definitely

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Speaker 3: have the disease, right, but it just increases there's susceptibility risk.

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Speaker 2: Markers, right, it increases your risk.

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Speaker 3: So one is called the APO E four A little

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Speaker 3: that's the one that is a risk allell for this disease.

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Speaker 3: But other than that, we have a lot of research

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Speaker 3: showing that there are certain things that increase your risk,

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Speaker 3: but nothing has been definitively pointed out to be like, oh,

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Speaker 3: this is the cause of Alzheimer's, right.

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Speaker 2: So some of the risk factors that.

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Speaker 3: People are looking at are like vascular changes. So we

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Speaker 3: know there's a connection between the heart and the brain.

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Speaker 3: So people who have cardiovascular disease, diabetes, or hypertension, they

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Speaker 3: have a higher risk of contracting Alzheimer's And we don't

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Speaker 3: really know why that is yet, so it's hard to

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Speaker 3: really pinpoint, but people are focusing in on risk factors

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Speaker 3: for the disease.

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Speaker 1: Got it? And is there a family history component you

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Speaker 1: mentioned like the genetic piece, but is there like a

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Speaker 1: hereditary kind of thing.

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Speaker 2: Yeah, I mean it's not exact.

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Speaker 3: But you know, especially for black people, if you have

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Speaker 3: a first degree relative, so a parent or a sibling

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Speaker 3: who have at Alzheimer's disease, your risk has increased. Again,

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Speaker 3: it does not mean you will definitely get it.

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Speaker 2: When I'm talking.

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Speaker 3: About Alzheimer's disease here, I'm talking about late onset, so

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Speaker 3: these are people who get it past a sixty five.

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Speaker 3: There is another kind that's much more rare, called early onset,

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Speaker 3: and that is determined by specific mutations and genes. So

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Speaker 3: if you have a specific mutation you will get this

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Speaker 3: early onset, but most people don't get that. Most people

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Speaker 3: get the late onset. And then for that one, it's

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Speaker 3: not hereditary. It's just that your risk has increased if

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Speaker 3: you have a first degree relative got it.

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Speaker 1: And with early onset, are you talking about symptoms even

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Speaker 1: before the age of sixty five.

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Speaker 3: Yeah, yeah, I'm talking about people who are getting it

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Speaker 3: in their thirties and forties, so.

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Speaker 2: That's very rare.

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Speaker 3: There's maybe two hundred families in the world who have

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Speaker 3: that specific mutation, so people are doing research on those families, right,

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Speaker 3: But the majority of people will get the late onset.

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Speaker 1: Kind got it And it may be too early to

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Speaker 1: tell this, doctor Boyn's But is there any connection or

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Speaker 1: any exploration being done between COVID and Alzheimer's disease.

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Speaker 2: There were a lot of studies looking at it.

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Speaker 3: I mean, I think, like you say, it's still early,

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Speaker 3: but when we were in the midst of the pandemic,

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Speaker 3: there were a lot of people looking at the relationship

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Speaker 3: with COVID increase your risk, And I think I'm aware

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Speaker 3: of maybe one study that showed that there.

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Speaker 2: Was an increased risk.

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Speaker 3: But you know, in research, you need to have studies

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Speaker 3: to be replicated and done over and over. So I

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Speaker 3: think the jury is still out on that. But people

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Speaker 3: are definitely still interested in the connection between COVID and Alzheimer's.

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Speaker 3: And in fact, we added a COVID questionnaire to our

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Speaker 3: studies so that we could see what's the impact of

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Speaker 3: having COVID having it more than once?

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Speaker 2: What's the impact if you were vaccinated?

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Speaker 3: But all those questions just take time for us to

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Speaker 3: be able to see the effects.

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Speaker 1: Got it. It feels like we often hear Alzheimer's disease

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Speaker 1: mentioned in connection to Parkinson's and dementia. Are they a

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Speaker 1: part of a family of conditions or what is the

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Speaker 1: connection between all three of those?

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Speaker 2: Yeah, that's a good question.

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Speaker 3: So when we say dementia, it's just an umbrella term

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Speaker 3: meaning loss of thinking skills, right, And so you can

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Speaker 3: have dementia for a number of different reasons. So if

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Speaker 3: someone says I have dementia, your next question should be

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Speaker 3: what kind? Because you can have dementia from Alzheimer's disease.

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Speaker 3: That's the most common cause of dementia, and we've already

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Speaker 3: talked about what Alzheimer's disease is. You could also have

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Speaker 3: something called frontal temporal dementia or Louis body dementia, and

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Speaker 3: all of those are different types of dementias that affect

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Speaker 3: different parts of the brain. Right, Parkinson's disease is a

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Speaker 3: separate neurodegenerative disease. A specific part of your brain called

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Speaker 3: the basal ganglia is affected and it affects movement. So

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Speaker 3: you will see people who have tremor or stiff muscles,

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Speaker 3: rigid muscles, or they have trouble walking or having good balance.

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Speaker 3: And in the rare cases, you can have a dementia

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Speaker 3: because of Parkinson's disease, but most people don't get dementia

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Speaker 3: from Parkinson's disease. So when you think about the different diseases,

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Speaker 3: think about you have this big umbrella of dementia, and

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Speaker 3: then underneath the umbrella you have all these different causes

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Speaker 3: vascular dementia, Alzheimer's disease, Louis body and then you could

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Speaker 3: have Parkinson's disease as a particular type of dementia, but

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Speaker 3: not everyone with Parkinson's disease will get dementia.

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Speaker 2: Does that make sense?

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Speaker 1: Yes, it does, it does. Thank you so much for

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Speaker 1: highlighting those differences. And I didn't know that dementia was

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Speaker 1: kind of umbrella terms, So that's terrible to know.

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Speaker 3: Yeah, people always get it mixed up and they think

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Speaker 3: that they're either the same thing. It's just a general term,

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Speaker 3: like you could have a cough, and a cough could

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Speaker 3: because of all kind of different things, right, because you

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Speaker 3: have cancer, you have a cold, So dementia is similar.

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Speaker 3: It's just a general term with many different causes.

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Speaker 1: So I would imagine since it's been so difficult as

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Speaker 1: a pinpoint a cause for Alzheimer's disease, that means that

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Speaker 1: treatment probably looks lots of different ways. Can you talk

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Speaker 1: a little bit about some of the treatment protocols for Alzheimer's.

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Speaker 3: Yeah, you know, it's an exciting time for us right

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Speaker 3: now in the Alzheimer's field because we really did not

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Speaker 3: have any great treatment options. I mean we really still don't.

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Speaker 3: But before this year, maybe it was last year. For

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Speaker 3: twenty years, we did not have any new treatments. Everything

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Speaker 3: we've tried was just failing. So before this year, we

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Speaker 3: had two types of treatments that really were only good

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Speaker 3: for like the early stages of the disease. Right, So

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Speaker 3: there were kinds called cholinestorates inhibitors so there's a few

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Speaker 3: different drugs that fall under that protocol. There's a type

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Speaker 3: of chemical in the brain called acetocholine, which is important

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Speaker 3: for memory, and so these cholinesterates inhibitors, they keep acetacholine

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Speaker 3: in the brain, right, and so they help it not

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Speaker 3: break down, so that can help your memory and thinking skills.

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Speaker 2: And that was really good for people.

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Speaker 3: In the early and mild to moderate disease stage. And

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Speaker 3: then a little bit after we had that for a while,

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Speaker 3: we started to have another kind that was working on glutamate,

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Speaker 3: which is another chemical in the brain important for thinking skills,

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Speaker 3: and those were called MNDA antagonists, that's the long word

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Speaker 3: for it.

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Speaker 2: So we had these two different types of medications.

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Speaker 3: That we were working on, one forcetocholine and one for glutamate.

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Speaker 3: But these were really only helping the symptoms of the disease, right,

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Speaker 3: They weren't doing anything to change.

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Speaker 2: The actual biology of the disease.

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Speaker 3: Well, fast forward to I think maybe last year, we

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Speaker 3: had a new drug come out called the Kimbi and

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Speaker 3: this is the first FDA approved disease modifying drug, which

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Speaker 3: means that it's actually changing the course of the disease.

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Speaker 3: So this drug is removing I told you about the

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Speaker 3: amyloid plaques that we have building up. It removes that

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Speaker 3: amyloid in the brain, so that hopefully the people will

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Speaker 3: have their cognition maintained for a longer time. We're still

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Speaker 3: like studying people to see the long term effects of

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Speaker 3: this drug, but it's promising because I say it's one

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Speaker 3: of the first ones to actually change the underlying biology.

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Speaker 3: And also it seems like maybe the clinical symptoms are

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Speaker 3: getting better now. With everything, you know, there's bad and good, right,

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Speaker 3: So this drug has a lot of side effects.

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Speaker 2: It's super expensive, and it's a lot of side effects.

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Speaker 3: And the other sort of disappointing think about this drug

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Speaker 3: is that there weren't very many black people in the

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Speaker 3: clinical trial, which you know you find for a lot

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Speaker 3: of diseases, right, but for something like this where there's

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Speaker 3: such terrible side effects and a chance of death, you

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Speaker 3: really want to be able to have people of different

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Speaker 3: racism and ethnicity in the study so that you can

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Speaker 3: assess safety, right and see if the drug.

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Speaker 2: Works for that population.

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Speaker 3: Well, we had less than two percent of black people

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Speaker 3: in the trial, so it's really not clear how this

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Speaker 3: drug will work in black people. Those are the treatment

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Speaker 3: options right now, and then there's a whole host of

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Speaker 3: treatment options for like the other symptoms that you see

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Speaker 3: in Alzheimer's. So, like I told you about the behavioral changes,

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Speaker 3: So sometimes people will get on antipsychotics. If they have

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Speaker 3: sleep problems, they might take sleep medications. So there's a

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Speaker 3: bunch of different things that you can do to treat

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Speaker 3: sort of the other symptoms that come with the disease.

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Speaker 3: Then there's a lot of non pharmacological treatments that people

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Speaker 3: are also looking at to see if those might help.

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Speaker 1: Can you say more about the non pharmacological treatment, Yeah.

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Speaker 3: So people are looking at things like diet to see

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Speaker 3: if that could have an effect. They are looking at

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Speaker 3: things like physical activity to see if people who are

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Speaker 3: in age and more physical interventions might have a slower

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Speaker 3: rate of decline. Also, I think there's some sleep trials

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Speaker 3: that are just being started to understand if there's something

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Speaker 3: about sleep that could be changed or intervened upon to

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Speaker 3: help with the disease.

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Speaker 2: So things like that.

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Speaker 3: Nothing has really worked so far, but we're researchers, so

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Speaker 3: we just keep trying, right, so we find something. There's

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Speaker 3: one trial that was successful, and that was blood pressure

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Speaker 3: control trial called mind Sprint, So they found that really

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Speaker 3: intensive blood pressure controlled treatment seemed.

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Speaker 2: To help with the risk of mild cognitive impairment.

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Speaker 3: At least it wasn't significant for Alzheimer's disease, but sort

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Speaker 3: of the precursor to Alzheimer's MCI, so they did find

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Speaker 3: an effect for MCI.

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Speaker 1: Got it more from our conversation after the break, but

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Speaker 1: first a quick snippet of what's coming next week on TVG.

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Speaker 1: You're also the founder of Every Black Muslim Girl. Can

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Speaker 1: you tell me what inspired you to create the platform.

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Speaker 4: I realized that, oh, there isn't actually a space for

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Speaker 4: black Muslim women. I realized that there's a lack of

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Speaker 4: community when it comes to Black Muslim women. It's either

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Speaker 4: wearing black spaces and were too Muslim, or wearing Muslim

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Speaker 4: spaces and were too black. So it was birth to

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Speaker 4: almost serve the purpose of the intersection that we live

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Speaker 4: with on a daily basis.

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Speaker 1: So, doctor Bares, you mentioned the new drug like kimb

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Speaker 1: that the clinical trials did not include a lot of

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Speaker 1: black participants, and we know that kind of is across

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Speaker 1: the board. It seems like with clinical trials, is there

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Speaker 1: something that the FDA looks at in a clinical trial

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Speaker 1: when there is not a lot of diversity in the

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Speaker 1: pool or they're like warnings. Would that prevent a drug

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Speaker 1: from actually passing FDA approval because it's not really representative

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Speaker 1: of the population.

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Speaker 3: That's a great question. It is outside my wheelhouse. But

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Speaker 3: I will tell you that it must not matter because

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Speaker 3: this drug was approved and it was only two percent,

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Speaker 3: And so I don't know what goes into approvals. You know.

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Speaker 3: I'm sure they must weigh the clinical evidence because it's

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Speaker 3: all based on the results of the trial, right, so

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Speaker 3: they weigh all of that, But when they look at

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Speaker 3: the actual sample, I don't know what they look at

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Speaker 3: because they approved this, and you know, we wrote a

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Speaker 3: paper of an editorial pointing out that we would hope

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Speaker 3: that they would at least put a label on the

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Speaker 3: drug to say that this has not been tested sufficiently

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Speaker 3: in a range of people to really know whether it

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Speaker 3: works or safety effects.

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Speaker 2: So who knows that they're going to actually do that.

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Speaker 3: At the very least, I would hope that the describing

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Speaker 3: physicians would really talk to the patients about the risks

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Speaker 3: and benefits of the drug and the side effects and

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Speaker 3: who was included in the clinical trial.

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Speaker 2: That's really important.

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Speaker 1: Yeah, that was my next question, like, what is the

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Speaker 1: physician education part if there is no label, right, I

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Speaker 1: guess it's really just on the prescribers to be up

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Speaker 1: to date to know who to prescribe to me exactly.

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Speaker 3: And right now, I think only neurologists are able to

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Speaker 3: prescribe this drug because it's an infusion that has to

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Speaker 3: happen like every two weeks and you have to have

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Speaker 3: an MRI to make sure that you don't have brain

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Speaker 3: bleeds and things like that that the drug can cause.

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Speaker 2: So right now it's only.

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Speaker 3: Going to be restricted use by people who have their credentials,

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Speaker 3: so it's not going to be used in primary care yet.

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Speaker 3: So hopefully neurologists will be well versed in the clinical

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Speaker 3: trial that led to the approval as well as the

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Speaker 3: side effects.

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Speaker 1: Thank you so much for that. I appreciate you kind

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Speaker 1: of going into that with me. So I want to

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Speaker 1: dig more into your research specifically on black older patients

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Speaker 1: and hear a little more about what kinds of things

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Speaker 1: you found. And we know for a lot of diseases

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Speaker 1: and disorders, black people are disproportionately impacted, So what are

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Speaker 1: some of the findings you think that we should be

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Speaker 1: aware of.

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Speaker 3: Yeah, I started my work in this area because of

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Speaker 3: what you just said, the fact that we are disproportionately

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Speaker 3: burdened by most diseases, but by this one in particular.

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Speaker 3: It's thought that we are two times more likely to

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Speaker 3: have Alzheimer's disease than other racists and ethnicities, and nobody

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Speaker 3: knows why. And so I wanted to start a study

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Speaker 3: where I could really focus in on older African Americans

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Speaker 3: because most of the research has actually been done with

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Speaker 3: older white people. I mean that's true for research in general,

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Speaker 3: but especially when it comes.

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Speaker 2: To older adults.

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Speaker 3: The bulk of the studies, if you look across the literature,

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Speaker 3: has been done with older white adults. They're the ones

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Speaker 3: who have been historically included in research studies. And so

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Speaker 3: I started a study of older African Americans who I've

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Speaker 3: been following since two thousand and four in Chicago. And

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Speaker 3: these are older adults who don't have the disease at

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Speaker 3: the beginning. So we enroll people without dementia, and then

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Speaker 3: we follow them every year, testing their memory and thinking skills,

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Speaker 3: asking a lot of different questions about their life to

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Speaker 3: try to identify risk factors.

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Speaker 2: We take blood so we can look at genetic.

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Speaker 3: Risk factors and we follow them over time, and then

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Speaker 3: at the end of their life, some people donate their

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Speaker 3: brain to the study so that we can then look

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Speaker 3: at the brain to relate all the things we learned

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Speaker 3: about when they were living to what we see in

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Speaker 3: the physical brain.

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Speaker 2: And that's how we're.

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Speaker 3: Able to discover or to find out what are some

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Speaker 3: unique risk factors that might be causing impairment in African Americans.

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Speaker 3: Because everybody's starting without dementia, you're following them over time.

442
00:24:57,840 --> 00:25:00,879
Speaker 3: Some people are going to get dementia eventually, right some people,

443
00:25:01,240 --> 00:25:03,200
Speaker 3: and so then you could really see like what were

444
00:25:03,240 --> 00:25:06,480
Speaker 3: the factors that were different in people that led to dementia.

445
00:25:06,640 --> 00:25:10,280
Speaker 3: So we have found some really interesting things in the study.

446
00:25:10,680 --> 00:25:13,560
Speaker 3: And I was particularly interested in things that are really

447
00:25:13,640 --> 00:25:18,479
Speaker 3: important for being black in the United States. So one

448
00:25:18,520 --> 00:25:21,080
Speaker 3: of the things that I looked at was early life

449
00:25:21,200 --> 00:25:26,439
Speaker 3: experiences of going to segregated schools. So everybody lives in

450
00:25:26,480 --> 00:25:29,800
Speaker 3: Chicago now, but we know that during the Great Migration,

451
00:25:30,119 --> 00:25:33,359
Speaker 3: people moved from the South to escape the Jim Crow

452
00:25:33,480 --> 00:25:37,000
Speaker 3: South and come to the North for better job opportunities.

453
00:25:37,280 --> 00:25:40,640
Speaker 3: So we asked people about their early life experiences, where

454
00:25:40,640 --> 00:25:43,400
Speaker 3: were they born, where were they living at age twelve,

455
00:25:43,880 --> 00:25:47,239
Speaker 3: whether or not they attended segregated schools, you know, and

456
00:25:47,240 --> 00:25:48,440
Speaker 3: then for so how long?

457
00:25:48,520 --> 00:25:50,560
Speaker 2: So questions like that, and we.

458
00:25:50,680 --> 00:25:55,080
Speaker 3: Found that people who were born in the South and

459
00:25:55,160 --> 00:26:01,639
Speaker 3: who also reported that they attended legally desegregated schools have

460
00:26:01,800 --> 00:26:07,480
Speaker 3: the worst memory performance, the worst cognitive impairment than their counterparts,

461
00:26:07,760 --> 00:26:11,440
Speaker 3: even those who were born in the South attending legally

462
00:26:11,600 --> 00:26:15,200
Speaker 3: segregated schools. So that was an interesting finding for us

463
00:26:15,280 --> 00:26:19,119
Speaker 3: because we assumed that the segregated schools were going to

464
00:26:19,160 --> 00:26:22,879
Speaker 3: be worse, right because they had fewer resources. Sometimes there

465
00:26:22,880 --> 00:26:25,560
Speaker 3: were just one room church and only the teacher had

466
00:26:25,560 --> 00:26:28,440
Speaker 3: a book, you know, whereas the desegregated schools that's where

467
00:26:28,440 --> 00:26:28,720
Speaker 3: all the.

468
00:26:28,640 --> 00:26:31,080
Speaker 2: Money went, right. But we found the opposite.

469
00:26:31,119 --> 00:26:33,640
Speaker 3: We found that the kids who were at the desegregated

470
00:26:33,680 --> 00:26:36,000
Speaker 3: schools actually when you look at them in old age,

471
00:26:36,080 --> 00:26:38,439
Speaker 3: they're the ones that are doing worse. And so we

472
00:26:38,520 --> 00:26:41,840
Speaker 3: think what was happening here is that there's a stress

473
00:26:41,880 --> 00:26:45,720
Speaker 3: involved right of going to a place, desegregating a school

474
00:26:45,720 --> 00:26:48,119
Speaker 3: where you're not wanted. We've all seen the pictures of

475
00:26:48,160 --> 00:26:51,760
Speaker 3: people on the sidelines, throwing things at the kids, calling

476
00:26:51,800 --> 00:26:55,320
Speaker 3: them names and spitting at them. The teachers didn't want

477
00:26:55,320 --> 00:26:57,840
Speaker 3: them there, The other white kids didn't want them there.

478
00:26:58,000 --> 00:27:00,159
Speaker 3: So think about it. You are seven eight years year

479
00:27:00,200 --> 00:27:03,240
Speaker 3: old child in that environment. Of course it's going to

480
00:27:03,320 --> 00:27:05,800
Speaker 3: have an impact on you, right, And so we're able

481
00:27:05,840 --> 00:27:09,199
Speaker 3: to see this impact of this early life stressor fifty

482
00:27:09,280 --> 00:27:12,400
Speaker 3: sixty years later when they're an older age.

483
00:27:12,640 --> 00:27:13,680
Speaker 2: So that was one.

484
00:27:13,560 --> 00:27:17,600
Speaker 3: Really mind blowing finding for us that something happening in

485
00:27:17,680 --> 00:27:20,800
Speaker 3: early life can be such a traumatic experience that it

486
00:27:20,840 --> 00:27:23,480
Speaker 3: could affect how you age. And of course there's lots

487
00:27:23,520 --> 00:27:27,160
Speaker 3: of evidence from other groups like the Holocaust you know, survivors,

488
00:27:27,320 --> 00:27:30,360
Speaker 3: we've seen similar things with that population, so I guess

489
00:27:30,359 --> 00:27:32,000
Speaker 3: it shouldn't have been surprising, but.

490
00:27:32,119 --> 00:27:34,600
Speaker 2: Because there was nothing out there, we were surprised.

491
00:27:35,240 --> 00:27:38,480
Speaker 3: Another thing that we look at the experiences of discrimination,

492
00:27:38,600 --> 00:27:41,160
Speaker 3: So we ask people about how often are they treated

493
00:27:41,320 --> 00:27:45,600
Speaker 3: unfairly or you know, do they receive poor treatment in

494
00:27:45,640 --> 00:27:49,399
Speaker 3: stores or restaurants using a validated measure, and we found

495
00:27:49,400 --> 00:27:53,359
Speaker 3: that people who report more discrimination have worse memory and

496
00:27:53,400 --> 00:27:57,640
Speaker 3: thinking skills than those who report less discrimination. We also

497
00:27:57,800 --> 00:28:00,199
Speaker 3: just looked at a general measure of stress. And if

498
00:28:00,240 --> 00:28:02,600
Speaker 3: we have a scale that measures how do you feel

499
00:28:02,640 --> 00:28:06,199
Speaker 3: about your life, is it unpredictable, overwhelming? And people who

500
00:28:06,280 --> 00:28:09,640
Speaker 3: score higher on that scale, they had a faster rate

501
00:28:09,680 --> 00:28:11,159
Speaker 3: of cognitive decline.

502
00:28:11,400 --> 00:28:12,320
Speaker 2: So it seems like the.

503
00:28:12,240 --> 00:28:15,960
Speaker 3: Bottom line for us at least is that stress seems

504
00:28:15,960 --> 00:28:20,480
Speaker 3: to be an important marker of impairment for older black adults.

505
00:28:20,680 --> 00:28:23,720
Speaker 3: And so we are trying to just now expand that

506
00:28:23,840 --> 00:28:27,680
Speaker 3: to look at more structural stressors, because right now we've

507
00:28:27,760 --> 00:28:31,560
Speaker 3: been focusing just on individual level stressors, So things that

508
00:28:31,680 --> 00:28:33,720
Speaker 3: happen to you, But what if you live in a

509
00:28:33,800 --> 00:28:38,040
Speaker 3: neighborhood where there are few resources, you don't have access

510
00:28:38,080 --> 00:28:40,680
Speaker 3: to healthy foods or to parks where you can get

511
00:28:40,680 --> 00:28:44,240
Speaker 3: physical activity, or there's a lot of crime. How does

512
00:28:44,320 --> 00:28:47,440
Speaker 3: that affect you as you age and your propensity to

513
00:28:47,520 --> 00:28:48,920
Speaker 3: develop Alzheimer's disease.

514
00:28:49,280 --> 00:28:50,960
Speaker 2: So those are the types of questions we're.

515
00:28:50,840 --> 00:28:54,360
Speaker 1: Asking now, Doctor Boynes, is there a use of aces

516
00:28:54,400 --> 00:28:57,720
Speaker 1: in your work? So the adverse childhood experiences scores? Are

517
00:28:57,760 --> 00:29:00,000
Speaker 1: you aware of any work connecting that to Alzheimer's.

518
00:29:00,600 --> 00:29:02,560
Speaker 2: Yeah, there's a lot of interest in that.

519
00:29:02,800 --> 00:29:05,320
Speaker 3: Actually, we actually have it in our study as well,

520
00:29:05,320 --> 00:29:07,000
Speaker 3: but we have not seen any.

521
00:29:06,800 --> 00:29:08,680
Speaker 2: Connections yet with Alzheimer's.

522
00:29:08,920 --> 00:29:11,640
Speaker 3: But there's a lot of people looking at early life

523
00:29:11,640 --> 00:29:16,000
Speaker 3: adversity because we know that those abnormal proteins I talked about,

524
00:29:16,040 --> 00:29:19,400
Speaker 3: the amyloid intel is actually building up in your brain

525
00:29:20,120 --> 00:29:24,560
Speaker 3: years before you see any clinical symptoms. So probably as

526
00:29:24,600 --> 00:29:28,320
Speaker 3: early as late thirties and forties, you're already getting this

527
00:29:28,400 --> 00:29:33,480
Speaker 3: accumulation of amyloid intae, right, And so as suggests that

528
00:29:33,640 --> 00:29:38,800
Speaker 3: whatever is causing the build up is probably happening way

529
00:29:38,920 --> 00:29:42,960
Speaker 3: before your sixties and seventies, right, So focusing in on

530
00:29:43,120 --> 00:29:46,160
Speaker 3: early life is probably a really good thing to do.

531
00:29:46,560 --> 00:29:49,880
Speaker 3: And so people are starting to look at this adversity

532
00:29:49,960 --> 00:29:53,080
Speaker 3: these ass to see if they might have any connection.

533
00:29:53,600 --> 00:29:56,560
Speaker 2: I will tell you in one study that I published.

534
00:29:56,360 --> 00:30:01,560
Speaker 3: I found that older black adults who reported more adversity.

535
00:30:01,640 --> 00:30:03,680
Speaker 3: It wasn't the ass that we used, but it was

536
00:30:03,720 --> 00:30:06,479
Speaker 3: a skill asking about how much food they had when

537
00:30:06,520 --> 00:30:09,280
Speaker 3: they were younger, if they ever went hungry, what kind

538
00:30:09,280 --> 00:30:12,520
Speaker 3: of cognitive stimulation they had in the home environment, and

539
00:30:12,600 --> 00:30:14,560
Speaker 3: their financial situation when they were young.

540
00:30:15,040 --> 00:30:16,000
Speaker 2: We found that.

541
00:30:16,720 --> 00:30:21,920
Speaker 3: Older black adults who reported more adversity actually had slower

542
00:30:22,280 --> 00:30:25,320
Speaker 3: rates of decline when they were older and So that

543
00:30:25,480 --> 00:30:29,240
Speaker 3: was curious, right, because it's like, why would more adversity

544
00:30:29,320 --> 00:30:30,760
Speaker 3: be better for you?

545
00:30:31,160 --> 00:30:32,680
Speaker 2: But it wasn't that it was better for you.

546
00:30:32,680 --> 00:30:35,320
Speaker 3: What we really think is that it probably is a

547
00:30:35,360 --> 00:30:38,800
Speaker 3: selection effect. So people who experienced a lot of acess

548
00:30:39,360 --> 00:30:43,160
Speaker 3: they probably die earlier, right, because aces are related to

549
00:30:43,160 --> 00:30:47,400
Speaker 3: cardiovascular disease, so people are having strokes or heart attacks,

550
00:30:47,680 --> 00:30:50,240
Speaker 3: and so if you die, then you obviously cannot be

551
00:30:50,400 --> 00:30:53,520
Speaker 3: in a study of older adults, right, So we're probably

552
00:30:53,800 --> 00:30:58,280
Speaker 3: studying people who are relatively resilient. They went through all

553
00:30:58,280 --> 00:31:01,360
Speaker 3: these terrible things that we know older adults went through

554
00:31:01,720 --> 00:31:02,720
Speaker 3: and they're still.

555
00:31:02,440 --> 00:31:03,520
Speaker 2: Here, right.

556
00:31:03,920 --> 00:31:06,960
Speaker 3: So I think this probably is a connection with asis,

557
00:31:07,120 --> 00:31:09,680
Speaker 3: but we just have to have the right sample to see.

558
00:31:09,520 --> 00:31:12,320
Speaker 1: It, doctor Boynes. As you're talking, it also feels like

559
00:31:12,400 --> 00:31:17,320
Speaker 1: there is likely a connection between trauma and Alzheimer's disease,

560
00:31:17,760 --> 00:31:18,040
Speaker 1: I think.

561
00:31:18,080 --> 00:31:21,080
Speaker 3: So there's different kinds of trauma, right, So people are

562
00:31:21,120 --> 00:31:23,800
Speaker 3: interested in racial trauma, but there's all other kinds of

563
00:31:23,800 --> 00:31:27,040
Speaker 3: trauma too, and so it's hard to do this though

564
00:31:27,160 --> 00:31:30,080
Speaker 3: in human research, right, And you can never do an

565
00:31:30,080 --> 00:31:33,320
Speaker 3: intervention because you can't expose someone to trauma. That's just

566
00:31:33,360 --> 00:31:36,680
Speaker 3: not ethical. It really is sort of restricted to studies

567
00:31:36,720 --> 00:31:40,160
Speaker 3: that ask about experiences of trauma, and then you have

568
00:31:40,240 --> 00:31:42,160
Speaker 3: all kinds of things that come into play there, like

569
00:31:42,280 --> 00:31:45,520
Speaker 3: recall bias, or that maybe some people that have repressed

570
00:31:45,560 --> 00:31:49,480
Speaker 3: the trauma and they're not reporting exactly what happened. So

571
00:31:49,640 --> 00:31:51,920
Speaker 3: until we figure out ways to get around those kinds

572
00:31:51,960 --> 00:31:54,800
Speaker 3: of things, it is a hard area to study. But

573
00:31:54,840 --> 00:31:57,400
Speaker 3: I think it's fascinating and it probably will yield some

574
00:31:57,520 --> 00:31:59,120
Speaker 3: really good answers.

575
00:31:58,680 --> 00:32:11,640
Speaker 1: For us conversation after the break, and I'm curious to

576
00:32:11,680 --> 00:32:14,400
Speaker 1: hear more about your recruitment process. So these are people

577
00:32:14,400 --> 00:32:16,640
Speaker 1: that you have been studying and working with since two

578
00:32:16,640 --> 00:32:18,920
Speaker 1: thousand and four, and you're saying some of them have

579
00:32:19,120 --> 00:32:22,320
Speaker 1: actually donated their brains to the study. Can you talk

580
00:32:22,360 --> 00:32:25,440
Speaker 1: about how you cultivate a relationship that's so long standing

581
00:32:25,480 --> 00:32:27,880
Speaker 1: and that they would trust that they could donate their

582
00:32:27,920 --> 00:32:28,840
Speaker 1: brain to the study.

583
00:32:28,920 --> 00:32:32,880
Speaker 3: Yeah, So before I started the study, I actually worked

584
00:32:32,880 --> 00:32:36,840
Speaker 3: in the community just to build relationships and build trust,

585
00:32:36,920 --> 00:32:40,960
Speaker 3: like you said, because as we know, there's a history

586
00:32:41,200 --> 00:32:44,200
Speaker 3: of abuse when it comes to research with black people,

587
00:32:44,640 --> 00:32:48,440
Speaker 3: and so even though I'm black, I had to prove

588
00:32:48,520 --> 00:32:51,680
Speaker 3: myself right because I work at a white institution, and

589
00:32:51,760 --> 00:32:54,120
Speaker 3: so it's not like I just came in and.

590
00:32:54,120 --> 00:32:55,520
Speaker 2: People automatically trusted me.

591
00:32:56,000 --> 00:33:00,479
Speaker 3: So I spent many, many hours in the community giving

592
00:33:00,680 --> 00:33:06,640
Speaker 3: presentations on healthy brain, aging, memory laws, Alzheimer's disease, working

593
00:33:06,680 --> 00:33:11,520
Speaker 3: at healthfares, doing memory screens for people, hosting meetings, going

594
00:33:11,560 --> 00:33:15,080
Speaker 3: to meetings, whatever the community needed. I was there with

595
00:33:15,160 --> 00:33:18,200
Speaker 3: my team so that we could really learn what people

596
00:33:18,200 --> 00:33:21,400
Speaker 3: were interested in and really get to know people. And

597
00:33:21,480 --> 00:33:24,440
Speaker 3: so over time I was started to be invited to

598
00:33:24,560 --> 00:33:29,400
Speaker 3: like different events, different churches, different senior buildings to give

599
00:33:29,440 --> 00:33:32,680
Speaker 3: these presentations. And so after I'm doing this for maybe

600
00:33:32,720 --> 00:33:35,080
Speaker 3: about a couple of years, I think when I tried

601
00:33:35,120 --> 00:33:37,400
Speaker 3: to go in for my first grant, I had to

602
00:33:37,440 --> 00:33:40,120
Speaker 3: have letters of support, and I went back to these

603
00:33:40,240 --> 00:33:43,520
Speaker 3: organizations and I got all these letters of support saying, yes, well,

604
00:33:43,600 --> 00:33:46,280
Speaker 3: we'll support your study. So when I got the grant

605
00:33:46,320 --> 00:33:49,160
Speaker 3: and I started recruiting, I got two hundred people in

606
00:33:49,200 --> 00:33:53,080
Speaker 3: the first year, which was like amazing, right, So they

607
00:33:53,240 --> 00:33:56,520
Speaker 3: just continued to grow over time. And so at first

608
00:33:56,560 --> 00:33:59,760
Speaker 3: I was not asking for brain donation because I still

609
00:33:59,760 --> 00:34:02,000
Speaker 3: want to like just get to know people and get

610
00:34:02,000 --> 00:34:04,920
Speaker 3: them to trust me. And so it wasn't until probably

611
00:34:04,960 --> 00:34:08,600
Speaker 3: about maybe the second time I got refunded.

612
00:34:08,200 --> 00:34:09,840
Speaker 2: Because I've been refunded for the study.

613
00:34:10,040 --> 00:34:13,040
Speaker 3: The grants happen in five year cycles, so I'm now

614
00:34:13,080 --> 00:34:16,640
Speaker 3: in year sixteen to twenty. So during the second cycle

615
00:34:16,840 --> 00:34:21,160
Speaker 3: is when I introduce brain donation as an option, because

616
00:34:21,200 --> 00:34:24,000
Speaker 3: you know, when you look at the literature, there's virtually

617
00:34:24,040 --> 00:34:27,440
Speaker 3: no studies looking at the actual brain in black people,

618
00:34:28,120 --> 00:34:31,440
Speaker 3: and so we all know that race is a social construct,

619
00:34:31,520 --> 00:34:34,560
Speaker 3: so we don't think there's any difference physically in the brains,

620
00:34:34,920 --> 00:34:38,000
Speaker 3: but we do think that there are experiences, the ones

621
00:34:38,040 --> 00:34:41,200
Speaker 3: we've been talking about that happen that can cause different

622
00:34:41,239 --> 00:34:43,319
Speaker 3: things to happen in your brain. So you have to

623
00:34:43,360 --> 00:34:45,600
Speaker 3: really be able to see the brain itself to be

624
00:34:45,600 --> 00:34:48,160
Speaker 3: able to measure those underlying pathologies.

625
00:34:48,360 --> 00:34:50,320
Speaker 2: But there's nothing like that in the literature.

626
00:34:50,800 --> 00:34:53,360
Speaker 3: So I just started talking to people about what we

627
00:34:53,480 --> 00:34:56,360
Speaker 3: don't know and what we need to know, and how

628
00:34:56,480 --> 00:34:59,480
Speaker 3: most of everything we're learning has been learned in white people.

629
00:35:00,080 --> 00:35:01,799
Speaker 2: We don't know if the same thing's going to.

630
00:35:01,719 --> 00:35:05,320
Speaker 3: Apply to us, And so people started to get interested

631
00:35:05,360 --> 00:35:07,880
Speaker 3: in that, and so we have a form that you

632
00:35:07,920 --> 00:35:10,799
Speaker 3: can sign saying that I'll give my brain to you

633
00:35:10,840 --> 00:35:14,000
Speaker 3: when I die as a gift and we don't really

634
00:35:14,080 --> 00:35:17,799
Speaker 3: need anybody else to sign it because these people don't

635
00:35:17,840 --> 00:35:20,040
Speaker 3: have dementia yet, so they have the capacity to make

636
00:35:20,080 --> 00:35:23,440
Speaker 3: these kind of decisions. But who's going to call us

637
00:35:23,440 --> 00:35:26,279
Speaker 3: when they die? We have to have a family member.

638
00:35:26,080 --> 00:35:29,400
Speaker 2: Call us, right, So we learned the hard way that

639
00:35:29,440 --> 00:35:31,880
Speaker 2: it's not enough just to have that form signed.

640
00:35:32,120 --> 00:35:34,040
Speaker 3: You have to actually be able to make sure that

641
00:35:34,120 --> 00:35:37,799
Speaker 3: the person has talked to their next pin so that

642
00:35:37,880 --> 00:35:40,279
Speaker 3: person will cause at the time of death. And so

643
00:35:40,560 --> 00:35:43,840
Speaker 3: that has been happening now and so we have about

644
00:35:43,880 --> 00:35:48,000
Speaker 3: one hundred and fifty brains from people who've donated over time,

645
00:35:48,080 --> 00:35:50,440
Speaker 3: which is more than anyone else in the country has.

646
00:35:50,800 --> 00:35:54,000
Speaker 3: And we're continuing as people age to get these brains.

647
00:35:54,239 --> 00:35:57,359
Speaker 3: But it's a very challenging process and one that just

648
00:35:57,560 --> 00:36:00,560
Speaker 3: requires lots of education and lots of diet law with

649
00:36:00,719 --> 00:36:02,480
Speaker 3: families and with the participants.

650
00:36:02,960 --> 00:36:05,879
Speaker 1: Got it? Got it? And are you collaborating with other

651
00:36:06,000 --> 00:36:08,880
Speaker 1: research teams who want to study other things? I mean,

652
00:36:08,960 --> 00:36:11,120
Speaker 1: could you have this whole collection of brains now?

653
00:36:11,200 --> 00:36:15,319
Speaker 3: So with that process, absolutely, So when people sign their

654
00:36:15,360 --> 00:36:17,719
Speaker 3: informed Consent form, which is, you know, the form that

655
00:36:17,760 --> 00:36:19,919
Speaker 3: says you will be in the research study we talk

656
00:36:20,000 --> 00:36:24,880
Speaker 3: about that. We will share the data with other investigators

657
00:36:24,920 --> 00:36:27,760
Speaker 3: who are approved by US, and so if people agree

658
00:36:27,800 --> 00:36:29,799
Speaker 3: to that, they can opt out if they want to.

659
00:36:29,840 --> 00:36:32,279
Speaker 3: If they agree to that, then all the data go

660
00:36:32,440 --> 00:36:36,600
Speaker 3: into a repository. Everything is deidentified, so no one's name

661
00:36:36,680 --> 00:36:37,160
Speaker 3: is on there.

662
00:36:37,239 --> 00:36:39,920
Speaker 2: You can't connect the information to any person.

663
00:36:40,400 --> 00:36:44,359
Speaker 3: But we have investigators who might be interested, say in diabetes,

664
00:36:44,719 --> 00:36:47,680
Speaker 3: So they'll go to our website, they'll sign up, they'll

665
00:36:47,680 --> 00:36:49,760
Speaker 3: give us a proposal for what they want to study,

666
00:36:49,960 --> 00:36:52,200
Speaker 3: and then we'll have a committee vote on it. And

667
00:36:52,239 --> 00:36:55,279
Speaker 3: then if it's a reasonable scientific question and they have

668
00:36:55,360 --> 00:36:57,920
Speaker 3: the right team, we'll give the data so that they

669
00:36:57,920 --> 00:36:59,319
Speaker 3: can examine their question.

670
00:37:00,080 --> 00:37:00,200
Speaker 2: Us.

671
00:37:00,200 --> 00:37:02,920
Speaker 3: We've been following people for twenty plus years. We have

672
00:37:03,080 --> 00:37:05,680
Speaker 3: all kinds of information on them, and we have their blood,

673
00:37:05,960 --> 00:37:08,520
Speaker 3: we have their brain, we have all the information they

674
00:37:08,520 --> 00:37:11,360
Speaker 3: gave us about their life, their thinking skills.

675
00:37:11,560 --> 00:37:13,319
Speaker 2: So all kinds of people are coming to us.

676
00:37:13,560 --> 00:37:16,560
Speaker 3: So my studies now has supported I don't know, hundreds

677
00:37:16,600 --> 00:37:19,520
Speaker 3: of other studies that are interested in black people and

678
00:37:19,920 --> 00:37:21,200
Speaker 3: different disease outcomes.

679
00:37:21,560 --> 00:37:24,319
Speaker 1: Got it. Thank you for that, doctor Boynes. So I

680
00:37:24,360 --> 00:37:26,440
Speaker 1: want to shift gives a little bit to talk about

681
00:37:26,480 --> 00:37:30,520
Speaker 1: the impact on the family after an Alzheimer's disease diagnosis.

682
00:37:30,760 --> 00:37:33,040
Speaker 1: And I know we sometimes see in the media where

683
00:37:33,440 --> 00:37:36,960
Speaker 1: people will have periods of lucidity even in the background

684
00:37:37,040 --> 00:37:40,480
Speaker 1: of Alzheimer's disease. Is this something that is common in

685
00:37:40,480 --> 00:37:43,320
Speaker 1: What makes that happen like that there will be periods

686
00:37:43,320 --> 00:37:43,880
Speaker 1: of clarity?

687
00:37:44,440 --> 00:37:47,880
Speaker 3: Yeah, I don't think we fully understand that process. It

688
00:37:48,000 --> 00:37:51,080
Speaker 3: is common, but as I said before, the disease is

689
00:37:51,120 --> 00:37:54,680
Speaker 3: so variable from person to person. It's really hard to

690
00:37:55,239 --> 00:37:58,000
Speaker 3: paint a picture of what is common in this disease.

691
00:37:58,560 --> 00:38:01,880
Speaker 3: But it's probably, you know, something to do with how

692
00:38:02,000 --> 00:38:05,440
Speaker 3: the pathology in the brain is spreading throughout the brain,

693
00:38:05,960 --> 00:38:08,440
Speaker 3: and so depending on what parts of the brain are

694
00:38:08,560 --> 00:38:12,080
Speaker 3: damaged or how much resilience a person might have, which is,

695
00:38:12,120 --> 00:38:14,920
Speaker 3: you know, you might have the pathology, but you still

696
00:38:15,000 --> 00:38:19,319
Speaker 3: have some other factor in your brain that's offsetting the

697
00:38:19,400 --> 00:38:20,680
Speaker 3: effect of the pathology.

698
00:38:21,040 --> 00:38:22,279
Speaker 2: We don't know what that is yet.

699
00:38:22,320 --> 00:38:24,719
Speaker 3: That's a black box and people are studying to try

700
00:38:24,719 --> 00:38:28,600
Speaker 3: to understand what are these resilient markers that allow people

701
00:38:28,680 --> 00:38:31,480
Speaker 3: to have this huge build up of pathology but.

702
00:38:31,520 --> 00:38:32,880
Speaker 2: They don't have symptoms.

703
00:38:33,000 --> 00:38:36,319
Speaker 3: Right, So the lucidity part probably has something to do

704
00:38:36,400 --> 00:38:39,480
Speaker 3: with just where the pathology is happening in the brain

705
00:38:39,880 --> 00:38:42,480
Speaker 3: and just these moments of clarity that come out of

706
00:38:42,520 --> 00:38:44,319
Speaker 3: the blue that we don't understand at all.

707
00:38:44,840 --> 00:38:47,760
Speaker 2: And so there's lots of research being done in that area.

708
00:38:47,920 --> 00:38:50,239
Speaker 3: That's not my area of research, but I know that

709
00:38:50,280 --> 00:38:52,920
Speaker 3: there are people who are trying to understand what's happening

710
00:38:52,960 --> 00:38:56,560
Speaker 3: and can they use those moments of lucidity to try

711
00:38:56,600 --> 00:39:00,359
Speaker 3: to be a target for other kinds of research or

712
00:39:00,400 --> 00:39:02,719
Speaker 3: maybe some drug treatments to look at that.

713
00:39:03,200 --> 00:39:04,920
Speaker 2: So it's an active area of research.

714
00:39:05,640 --> 00:39:08,319
Speaker 1: And can you talk about the impact on families. So

715
00:39:08,360 --> 00:39:11,000
Speaker 1: you've talked about like a lot of these behavioral changes.

716
00:39:11,160 --> 00:39:13,160
Speaker 1: You know, it sounds like there is a huge adjustment

717
00:39:13,440 --> 00:39:17,600
Speaker 1: depending on the pathology presentation for somebody impacted by Alzheimer's disease.

718
00:39:17,920 --> 00:39:21,040
Speaker 1: What kind of support exists for families and what kind

719
00:39:21,080 --> 00:39:23,200
Speaker 1: of support do you think that they typically need to

720
00:39:23,239 --> 00:39:24,000
Speaker 1: help a patient.

721
00:39:24,400 --> 00:39:25,920
Speaker 2: Yeah, that's a great question.

722
00:39:26,080 --> 00:39:29,880
Speaker 3: So I think there's a lot of work being done

723
00:39:30,239 --> 00:39:34,200
Speaker 3: on caregiving for Alzheimer's and black families. You know, it

724
00:39:34,320 --> 00:39:39,520
Speaker 3: tends to be informal family support, right because there's research

725
00:39:39,840 --> 00:39:43,640
Speaker 3: showing that we don't tend to use more of the

726
00:39:43,840 --> 00:39:47,680
Speaker 3: formal supports because it costs money, your assurance might not

727
00:39:47,760 --> 00:39:48,359
Speaker 3: pay for it.

728
00:39:48,760 --> 00:39:50,480
Speaker 2: You know, are other cultural.

729
00:39:50,080 --> 00:39:52,240
Speaker 3: Reasons why we want to take care of our loved

730
00:39:52,239 --> 00:39:55,799
Speaker 3: ones at home. The support in families tends to be

731
00:39:56,040 --> 00:39:59,040
Speaker 3: informal caregiving support, like if it's a husband and wife

732
00:39:59,080 --> 00:40:00,680
Speaker 3: will be with a spouse, or it could be the

733
00:40:00,719 --> 00:40:05,360
Speaker 3: grown kids, or it might be another relative in the family.

734
00:40:06,000 --> 00:40:07,880
Speaker 3: So that's sort of what the support looks like. But

735
00:40:07,920 --> 00:40:11,960
Speaker 3: there's a lot of actual structure support that people can

736
00:40:12,440 --> 00:40:15,200
Speaker 3: use that we tend not to use. I think one

737
00:40:15,239 --> 00:40:19,600
Speaker 3: place that I always tell participants that people in the community.

738
00:40:19,080 --> 00:40:21,120
Speaker 2: About is the Alzheimer's Association.

739
00:40:21,800 --> 00:40:26,239
Speaker 3: They have a twenty four hour hotline for caregivers or

740
00:40:26,280 --> 00:40:27,600
Speaker 3: for anybody who has a question.

741
00:40:28,000 --> 00:40:28,680
Speaker 2: People can just.

742
00:40:28,640 --> 00:40:32,160
Speaker 3: Go to the website Alzheimer's Association and see what that

743
00:40:32,400 --> 00:40:35,160
Speaker 3: phone number is. All over the country there are these

744
00:40:35,360 --> 00:40:41,279
Speaker 3: Alzheimer's Association chapters and they have support groups. They have

745
00:40:41,400 --> 00:40:45,400
Speaker 3: different activities for people with dementia, and they can point

746
00:40:45,480 --> 00:40:48,319
Speaker 3: you tobe places like there might be daycare centers for

747
00:40:48,360 --> 00:40:51,719
Speaker 3: people with Alzheimer's so that a caregiver can give a

748
00:40:51,800 --> 00:40:56,840
Speaker 3: few hours of respite because caregiving is very, very tough

749
00:40:57,239 --> 00:41:00,400
Speaker 3: for a person with Alzheimer's disease, because it's a around

750
00:41:00,440 --> 00:41:02,839
Speaker 3: the clock kind of thing depending on what stage they're in,

751
00:41:03,400 --> 00:41:06,319
Speaker 3: and so being able to get some rest and take

752
00:41:06,360 --> 00:41:09,200
Speaker 3: care of your own health is really important. So I

753
00:41:09,239 --> 00:41:13,240
Speaker 3: think if people can reach out to these kinds of organizations,

754
00:41:13,480 --> 00:41:16,600
Speaker 3: they can get the support in their area wherever they live.

755
00:41:17,120 --> 00:41:20,520
Speaker 3: And I think just getting support and getting education about

756
00:41:20,680 --> 00:41:24,160
Speaker 3: the disease itself and what to expect is really important.

757
00:41:24,440 --> 00:41:26,560
Speaker 3: I think the other thing that happens in our community

758
00:41:26,680 --> 00:41:31,080
Speaker 3: is that we tend to go undiagnosed because we think

759
00:41:31,160 --> 00:41:34,560
Speaker 3: that memory loss is a normal part of aging. How

760
00:41:34,600 --> 00:41:37,479
Speaker 3: many times have you heard, Oh, that's just grandma, she's

761
00:41:37,520 --> 00:41:39,880
Speaker 3: just losing her mind, or she's just c nile. We

762
00:41:40,000 --> 00:41:43,240
Speaker 3: still have this myth that memory loss is normal.

763
00:41:43,520 --> 00:41:43,840
Speaker 2: It's not.

764
00:41:44,440 --> 00:41:47,240
Speaker 3: You could be ninety ninety five and still be sharp

765
00:41:47,280 --> 00:41:50,560
Speaker 3: as attack and have your memory in tax. So I

766
00:41:50,560 --> 00:41:52,759
Speaker 3: think because we think that it's a normal part of

767
00:41:52,800 --> 00:41:55,920
Speaker 3: aging and that there's nothing that can be done, we

768
00:41:56,000 --> 00:41:58,840
Speaker 3: don't go to the doctor when we start noticing something.

769
00:41:59,239 --> 00:42:00,160
Speaker 2: So when you start.

770
00:42:00,120 --> 00:42:03,319
Speaker 3: Noticing that mom is repeating the same thing over and

771
00:42:03,360 --> 00:42:06,359
Speaker 3: over telling you the same story over and over, or

772
00:42:06,600 --> 00:42:09,760
Speaker 3: misplacing things more, forgetting to pay bills more.

773
00:42:10,000 --> 00:42:11,160
Speaker 2: Those are early.

774
00:42:10,960 --> 00:42:13,600
Speaker 3: Signs that you should go get checked out. It may

775
00:42:13,640 --> 00:42:16,600
Speaker 3: not be Alzheimer's, it could be something else. But if

776
00:42:16,640 --> 00:42:19,400
Speaker 3: you just wait, then you know. The drugs that we

777
00:42:19,520 --> 00:42:23,560
Speaker 3: do have, they don't really work well as a disease progresses.

778
00:42:23,560 --> 00:42:27,080
Speaker 3: They're really better for their early stages. And so I

779
00:42:27,080 --> 00:42:30,359
Speaker 3: think getting checked out early is what's important. As soon

780
00:42:30,360 --> 00:42:33,200
Speaker 3: as you start noticing something it seems different than how

781
00:42:33,239 --> 00:42:35,720
Speaker 3: it used to be, that's the time to call the doctor.

782
00:42:36,280 --> 00:42:39,360
Speaker 1: Yeah, and doctor Barnes, who makes a diagnosis of Alzheimer's

783
00:42:39,360 --> 00:42:42,600
Speaker 1: disease is that a primary care physician is a neurologist

784
00:42:42,680 --> 00:42:44,080
Speaker 1: involved in that diagnosis.

785
00:42:44,120 --> 00:42:46,319
Speaker 3: A lot of times a primary care doctor can make

786
00:42:46,360 --> 00:42:49,319
Speaker 3: the diagnosis nowadays if they have the education and the

787
00:42:49,360 --> 00:42:53,200
Speaker 3: information about the disease. But oftentimes it's done in a

788
00:42:53,320 --> 00:42:56,840
Speaker 3: memory care center, so it could be a neurologist, or

789
00:42:56,880 --> 00:43:00,719
Speaker 3: it could be a geriatrician or even a psychiatry, so

790
00:43:00,800 --> 00:43:05,600
Speaker 3: someone who has some experience and expertise in dementia can

791
00:43:05,640 --> 00:43:09,040
Speaker 3: make the diagnosis because it really is a process where

792
00:43:09,120 --> 00:43:13,960
Speaker 3: you get neuropsychological tests, You get a brain scan, you

793
00:43:14,040 --> 00:43:16,279
Speaker 3: get a bunch of blood tests to rule out other

794
00:43:16,400 --> 00:43:17,719
Speaker 3: causes of dementia.

795
00:43:18,160 --> 00:43:19,839
Speaker 2: So it's a full blown.

796
00:43:19,560 --> 00:43:22,960
Speaker 3: Process that happens, and oftentimes in primary care there's not

797
00:43:23,120 --> 00:43:25,919
Speaker 3: enough time to do the full blown so they might

798
00:43:26,160 --> 00:43:29,040
Speaker 3: do like a mini mental screen right to see like

799
00:43:29,120 --> 00:43:32,040
Speaker 3: what your kind of status is. But then if they

800
00:43:32,040 --> 00:43:35,880
Speaker 3: suspect something, they should then send you to a neurologist

801
00:43:36,120 --> 00:43:37,320
Speaker 3: or a geriatrician.

802
00:43:37,880 --> 00:43:41,640
Speaker 1: Got it, And you've talked about it's difficult to pinpoint

803
00:43:41,680 --> 00:43:44,080
Speaker 1: the causes. So I don't know that there are any

804
00:43:44,200 --> 00:43:47,600
Speaker 1: like protective kinds of things or preventative kinds of things.

805
00:43:47,600 --> 00:43:50,040
Speaker 1: I feel like I've heard stuff like puzzles and like

806
00:43:50,360 --> 00:43:53,040
Speaker 1: keeping your mind start maybe as a protective factor for

807
00:43:53,239 --> 00:43:56,200
Speaker 1: the umbrella of dementia. Yeah, are there things to be

808
00:43:56,360 --> 00:43:59,840
Speaker 1: mindful of or preventative steps people can take against Alzheimer's?

809
00:44:00,239 --> 00:44:03,640
Speaker 2: Yeah, I think so. I think prevention is really the key, right.

810
00:44:03,719 --> 00:44:06,560
Speaker 3: I mean, although most of these things have just been

811
00:44:06,600 --> 00:44:10,960
Speaker 3: shown in observational studies, and the intervention studies need to

812
00:44:11,000 --> 00:44:14,120
Speaker 3: still be done or be done better. But there are

813
00:44:14,160 --> 00:44:16,600
Speaker 3: definitely some things that we are finding that seem to

814
00:44:16,640 --> 00:44:20,000
Speaker 3: be a lot of evidence to suggest that it's helpful. So,

815
00:44:20,040 --> 00:44:23,000
Speaker 3: like you mentioned the puzzles, right, it's really more of

816
00:44:23,440 --> 00:44:26,120
Speaker 3: cognitive stimulation that seems.

817
00:44:25,880 --> 00:44:26,480
Speaker 2: To be important.

818
00:44:26,480 --> 00:44:31,080
Speaker 3: So people who read more books, do puzzles, board games,

819
00:44:31,200 --> 00:44:35,280
Speaker 3: or anything that keeps your brain active. Those things tend

820
00:44:35,320 --> 00:44:40,799
Speaker 3: to either push back the onset or slow the progression

821
00:44:40,960 --> 00:44:45,480
Speaker 3: of decline. Physical activity has been shown, so people who

822
00:44:45,560 --> 00:44:48,839
Speaker 3: are more physically active, probably because it helps with your

823
00:44:48,920 --> 00:44:53,000
Speaker 3: vascular system. Right, even something simple as walking. We're not

824
00:44:53,040 --> 00:44:55,440
Speaker 3: asking people to go to the gym, just walk, get

825
00:44:55,520 --> 00:44:57,960
Speaker 3: up and move your muscles. That seems to be helpful

826
00:44:58,000 --> 00:45:01,400
Speaker 3: for protecting your brain help I would say. Also, we

827
00:45:01,480 --> 00:45:04,319
Speaker 3: know that taking care of your numbers if you have

828
00:45:04,400 --> 00:45:07,839
Speaker 3: high blood pressure, if you have diabetes, you have high cholesterol,

829
00:45:08,239 --> 00:45:11,760
Speaker 3: making sure those things are treated and intact the numbers

830
00:45:11,800 --> 00:45:15,880
Speaker 3: are low, that seems to also be helpful. Diet we

831
00:45:16,040 --> 00:45:18,839
Speaker 3: just ran a diet trial and we did not get

832
00:45:18,960 --> 00:45:23,560
Speaker 3: an effect, unfortunately, but we found that both diets got better.

833
00:45:23,600 --> 00:45:26,359
Speaker 3: We were testing a specific diet, so the specific one

834
00:45:26,360 --> 00:45:29,520
Speaker 3: we were looking at did not show any benefit over

835
00:45:29,840 --> 00:45:33,440
Speaker 3: another diet. Both diets caused people to lose weight and

836
00:45:33,520 --> 00:45:36,400
Speaker 3: everybody got better. So we think that there's something about

837
00:45:36,440 --> 00:45:39,480
Speaker 3: eating healthy that's important for your brain. So making sure

838
00:45:39,480 --> 00:45:43,360
Speaker 3: that you're not eating those fast food and fried food

839
00:45:43,560 --> 00:45:45,280
Speaker 3: and lots of sweets and.

840
00:45:45,480 --> 00:45:47,279
Speaker 2: Things are not good for your brain. You can look

841
00:45:47,360 --> 00:45:48,480
Speaker 2: that up on the internet.

842
00:45:48,880 --> 00:45:52,680
Speaker 3: So definitely healthy diet, and then get enough sleep because

843
00:45:52,719 --> 00:45:55,400
Speaker 3: we know that the sleep process is where the memories

844
00:45:55,400 --> 00:45:59,360
Speaker 3: are consolidated. So it's something about having disrupted sleep that

845
00:45:59,440 --> 00:46:02,840
Speaker 3: seems to damage your brain. So I think those things

846
00:46:02,880 --> 00:46:09,040
Speaker 3: cognitive activity, physical activity, diet, sleep, and then minding their

847
00:46:09,080 --> 00:46:10,920
Speaker 3: health numbers. And then I have to put a plug

848
00:46:10,960 --> 00:46:13,360
Speaker 3: in for stress because that's what our research is finding.

849
00:46:13,520 --> 00:46:17,120
Speaker 3: Making sure that you are managing your stress. A little

850
00:46:17,120 --> 00:46:19,560
Speaker 3: stress is good, right because it gets you going, But

851
00:46:19,760 --> 00:46:22,480
Speaker 3: having an overwhelming amount of stress where.

852
00:46:22,320 --> 00:46:25,200
Speaker 2: You cannot cope, that definitely is not good for you.

853
00:46:25,600 --> 00:46:28,880
Speaker 3: So finding ways to cope with stress, to manage stress

854
00:46:29,200 --> 00:46:31,560
Speaker 3: probably is also a good preventive measure.

855
00:46:32,120 --> 00:46:34,080
Speaker 1: Go D Thank you so much for sharing that, doctor

856
00:46:34,120 --> 00:46:36,520
Speaker 1: bo Is. This has been such incredible information. I know

857
00:46:36,600 --> 00:46:39,359
Speaker 1: our community is really gonna appreciate it. Can you tell

858
00:46:39,440 --> 00:46:41,400
Speaker 1: us where we can stay connected with you? Do you

859
00:46:41,400 --> 00:46:43,640
Speaker 1: have a website or any social media handles you'd like

860
00:46:43,680 --> 00:46:44,160
Speaker 1: to share?

861
00:46:44,280 --> 00:46:46,919
Speaker 2: Yeah? So I'm on an X as it's called now.

862
00:46:47,200 --> 00:46:50,719
Speaker 3: Be Young forty is my handle, and so you could

863
00:46:50,760 --> 00:46:53,839
Speaker 3: always hit me up there and then you could find me.

864
00:46:53,880 --> 00:46:55,160
Speaker 2: On my email too.

865
00:46:55,239 --> 00:46:58,680
Speaker 3: Is l Barnes the number one at rush dot edu

866
00:46:59,080 --> 00:47:01,080
Speaker 3: and LinkedIn to so we can find me on LinkedIn.

867
00:47:01,600 --> 00:47:03,239
Speaker 1: We'll be sure to include all of that in the

868
00:47:03,280 --> 00:47:05,480
Speaker 1: show notes. Thank you for spending some time with us today.

869
00:47:05,600 --> 00:47:08,480
Speaker 2: Thank you really great, Thank you.

870
00:47:12,320 --> 00:47:14,359
Speaker 1: I'm so glad doctor Burnes was able to share her

871
00:47:14,400 --> 00:47:17,560
Speaker 1: expertise with us for this conversation. To learn more about

872
00:47:17,600 --> 00:47:20,120
Speaker 1: her and the work she's doing, visit the show notes

873
00:47:20,160 --> 00:47:23,600
Speaker 1: at Therapy for Blackgirls dot com slash Session three eighty two,

874
00:47:23,920 --> 00:47:25,759
Speaker 1: and don't forget to text this episode to two of

875
00:47:25,760 --> 00:47:28,600
Speaker 1: your girls right now and encourage them to check it out.

876
00:47:28,840 --> 00:47:31,399
Speaker 1: If you're looking for a therapists in your area, visit

877
00:47:31,440 --> 00:47:35,320
Speaker 1: our therapist directory at Therapy for Blackgirls dot com slash directory.

878
00:47:35,920 --> 00:47:38,200
Speaker 1: And if you want to continue digging into this topic

879
00:47:38,600 --> 00:47:41,239
Speaker 1: or just be in community with other sisters, come on

880
00:47:41,280 --> 00:47:43,799
Speaker 1: over and join us in the Sister Circle. It's our

881
00:47:43,840 --> 00:47:46,520
Speaker 1: cozy corner of the Internet designed just for black women.

882
00:47:47,040 --> 00:47:49,799
Speaker 1: You can join us at community dot Therapy for Blackgirls

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Speaker 1: dot Com. This episode was produced by Elise Ellis and

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Speaker 1: Zaria Taylor. Editing was done by Dennison Bradford. Thank y'all

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Speaker 1: so much for joining me again this week. I look

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Speaker 1: forward to continuing this conversation with you all real soon.

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Speaker 1: Take good care,