The idea of getting older and slowly losing memory of everything and everyone around us is something that can cause lots of dread and anxiety. Beyond the sensationalized depictions in shows such as Grey’s Anatomy, let's explore the real impacts of Alzheimer’s disease and how it can affect our families and loved ones. Joining me for this important conversation is cognitive neuropsychologist and Associate Director of the Rush Alzheimer’s Disease Research Center, Dr. Lisa L. Barnes. Dr. Barnes has published over 300 manuscripts, received many NIH grants, and is the Principal Investigator of two longitudinal community-based studies of older African Americans.
During our conversation, we discussed the common symptoms and presentations of Alzheimer’s, the link between Alzheimer’s and traumatic stress, and the importance of including Black folks in clinical trials when studying various medical interventions for Alzheimer’s.
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Welcome to the Therapy for Black Girls Podcast, a weekly conversation about mental health, personal development, and all the small decisions we can make to become the best possible versions of ourselves. I'm your host, doctor joy hard and Bradford, a licensed psychologist in Atlanta, Georgia. For more information or to find a therapist in your area, visit our website at Therapy for Blackgirls dot com. While I hope you love listening to and learning from the podcast, it is not meant to be a substitute for a relationship with a licensed mental health professional. Hey, y'all, thanks so much for joining me for session three eighty two of the Therapy for Black Girls Podcast. We'll get right into our conversation afterword from our sponsors.
Hi.
I'm doctor Lisa Barnes, and I'm on the Therapy for Black Girls podcast. I'm in session today unpacking my research on Alzheimer's disease.
The idea of getting older and slowly losing our memory of everything and everyone around us is something that can cause lots of dread and anxiety. Beyond the sensationalized depictions and shows such as Gray's Anatomy, let's explore the real impact of Alzheimer's disease and how it can affect our families and loved ones. Joining me for this important conversation is cognitive neuropsychologist and Associate director of the RUSH Alzheimer's Disease Research Center, doctor Lisa L. Burns. Doctor Barnes has published over three hundred manuscripts, received many NIH grants, and is the pre unimple investigator of two longitudinal community based studies of older African Americans. During our conversation, we discussed the common symptoms and presentations of Alzheimer's, the link between Alzheimer's in traumatic stress, and the importance of including black folks in clinical trials when studying various medical interventions for Alzheimer's. If something resonates with you while enjoying our conversation, please share with us on social media using the hashtag TVG in Session or join us over in the sister circles to talk more about the episode. You can join us at community dot therapy for Blackgirls dot Com. Here's our conversation, but thank you so much for joining us today, Doctor Vornes.
Thank you for having me.
Yeah honor to get a chance to chat with you. So you have had an incredible career over the past twenty years. You've been doing a lot of research on black people in Alzheimer's. Can you talk a little bit about how you got interested in that area of research.
Yes, So I went to school for psychology. I wanted to be a psychologist. Actually, at first I wanted to be a neurosurgeon, but I worked in a hospital for the summer internship and discovered that I did not really like that part of medicine, and so I decided because I really had a strong interest in the brain and understanding memory. Memory has always been such a fascinating topic for me since I was a really young kid, and so because I knew I could not really pull off being a neurosurgeon, I decided I still could make a contribution by studying the brain. Right, So I went to grad school to get my degree in biopsychology, and that allowed me to put together the biology that I really found interesting. With the psychology studying human behavior, but biopsychology was focused on.
How the brain controls behavior.
I did that and I really learned a lot about the brain and about how the brain controls memory. And then I had an internship in college actually where I got to work with this famous patient. His name was Hm and he had this experimental surgery where they removed the parts of his brain that's important for memory, and he could not remember anything. And I worked with him for like over a summer, and it just really solidified my interest in memory, because this was a man who did not have parts of his brain called the hippocampus, and all of a sudden he couldn't remember anything, make no new memories, and this was like for several years of his life. And so just really being able to understand how you can remove a part of the brain and then you're not able to function in a way that other people function. That was just fascinating to me. So that sort of sparked my interests even more. And then I went on to get into the field of Alzheimer's disease.
God it So, can you explain to us what exactly is Alzheimer's and what are some of the more typical presentations.
Yeah. So, Alzheimer's disease is a disease of the brain. It's characterized by a loss of memory and thinking skills. So it's a progressive neurodegenerative disease where people initially usually present with a loss of memory, but over time, as the disease progresses, you have many more clinical manifestations than just cognition. And so some of the typical changes that you see in a person with Alzheimer's memory loss is the number one that's a hallmark clinical feature. But then you also might see a lot of personality changes, right, so the person might get upset, worried, and angry, angrier than they usually get. Like a person who's really calm might turn to be this really like, easily upset, frustrated person, or could go the opposite way, someone who's tip really mean and upset all the time. It could totally change and become this nice, really laid back person. You might see depression a lot, so they're not interested in the things that they used to be interested in. You might notice that they start hiding things or believe that people are hiding things from them, or they might have hallucinations or imagine that things are there they're not actually there. We see a lot of wandering people get lost a lot with this disease. You might even see some physical changes where people are hitting physical violence type things, or people start hitting you and just being more combative, and I think as the disease progresses, we do see that people sort of stop caring about how they look, or they might stop bathing, they might want to wear the same clothes every day. So you see those kinds of changes, and it really varies from person to person. You're not ever going to find one behavioral sin or one type of behavior that is the same for every person. It really varies from person to person.
And doctor Barnes, where are we seeing impairment in the brain for Alzheimer's, So you mentioned like the hippocampus is important for memory. Where in the brain we're seeing some changes with Alzheimer's.
Yeah, that's a great question, because in Alzheimer's, the damage is widespread throughout the brain. If you think about the temporal progression, it does seem to occur first in the temporal cortex, which is, you know, the area right behind your ear, around your ears, and that's where the hippocampus is, and so we see the changes happening there first. But because of the type of damage in Alzheimer's disease, it's really all over the brain. And so as researchers, though we do tend to focus in more on the temporal lobes where we know the hippocampus is and the seed of memory, but also the frontal lobes right where there's more higher order thinking. But in Alzheimer's disease, you see it all over because there's two main pathologies that we see in this disease. And people may have heard about plaques and tangles, right, So what it is, it's abnormal build up of these proteins that are actually normally in our brain, but through different chemical processing, something happens to make these proteins build up either between the neurons, which we call the amyloid plaques, or inside the neurons, which are the tangles. So you might hear plaques and tangles we call the tangles TAEL. So right now we know that the disease is primarily caused by this amyloid and tael build up in the brain, but there's a lot of other things happening in the brain as you progress with the disease.
Got it, And can you say a little bit about what we know now, because I'm sure the research is ongoing. What are some of the things that might lead to somebody getting diagnosed with time?
It is a disease.
The sad thing about this disease is that we really don't know what causes it yet.
Right. We know that the number one.
Risk factor is age, So definitely as people get older.
Their risks increase for the disease.
So people over the age of sixty five, I would say maybe about ten percent will have the disease, but by the time you get to eighty five, it's almost fifty percent. So if you know you have two people over the age of eighty five, one of them will have the disease.
And so we don't know though, is it.
Getting older that's actually the risk factor or something associated with getting older? Right. We also know that there are some genetic markers that tend to increase your risk. It's not like if you have these markers you will definitely have the disease, right, but it just increases there's susceptibility risk.
Markers, right, it increases your risk.
So one is called the APO E four A little that's the one that is a risk allell for this disease. But other than that, we have a lot of research showing that there are certain things that increase your risk, but nothing has been definitively pointed out to be like, oh, this is the cause of Alzheimer's, right.
So some of the risk factors that.
People are looking at are like vascular changes. So we know there's a connection between the heart and the brain. So people who have cardiovascular disease, diabetes, or hypertension, they have a higher risk of contracting Alzheimer's And we don't really know why that is yet, so it's hard to really pinpoint, but people are focusing in on risk factors for the disease.
Got it? And is there a family history component you mentioned like the genetic piece, but is there like a hereditary kind of thing.
Yeah, I mean it's not exact.
But you know, especially for black people, if you have a first degree relative, so a parent or a sibling who have at Alzheimer's disease, your risk has increased. Again, it does not mean you will definitely get it.
When I'm talking.
About Alzheimer's disease here, I'm talking about late onset, so these are people who get it past a sixty five. There is another kind that's much more rare, called early onset, and that is determined by specific mutations and genes. So if you have a specific mutation you will get this early onset, but most people don't get that. Most people get the late onset. And then for that one, it's not hereditary. It's just that your risk has increased if you have a first degree relative got it.
And with early onset, are you talking about symptoms even before the age of sixty five.
Yeah, yeah, I'm talking about people who are getting it in their thirties and forties, so.
That's very rare.
There's maybe two hundred families in the world who have that specific mutation, so people are doing research on those families, right, But the majority of people will get the late onset.
Kind got it And it may be too early to tell this, doctor Boyn's But is there any connection or any exploration being done between COVID and Alzheimer's disease.
There were a lot of studies looking at it.
I mean, I think, like you say, it's still early, but when we were in the midst of the pandemic, there were a lot of people looking at the relationship with COVID increase your risk, And I think I'm aware of maybe one study that showed that there.
Was an increased risk.
But you know, in research, you need to have studies to be replicated and done over and over. So I think the jury is still out on that. But people are definitely still interested in the connection between COVID and Alzheimer's. And in fact, we added a COVID questionnaire to our studies so that we could see what's the impact of having COVID having it more than once?
What's the impact if you were vaccinated?
But all those questions just take time for us to be able to see the effects.
Got it. It feels like we often hear Alzheimer's disease mentioned in connection to Parkinson's and dementia. Are they a part of a family of conditions or what is the connection between all three of those?
Yeah, that's a good question.
So when we say dementia, it's just an umbrella term meaning loss of thinking skills, right, And so you can have dementia for a number of different reasons. So if someone says I have dementia, your next question should be what kind? Because you can have dementia from Alzheimer's disease. That's the most common cause of dementia, and we've already talked about what Alzheimer's disease is. You could also have something called frontal temporal dementia or Louis body dementia, and all of those are different types of dementias that affect different parts of the brain. Right, Parkinson's disease is a separate neurodegenerative disease. A specific part of your brain called the basal ganglia is affected and it affects movement. So you will see people who have tremor or stiff muscles, rigid muscles, or they have trouble walking or having good balance. And in the rare cases, you can have a dementia because of Parkinson's disease, but most people don't get dementia from Parkinson's disease. So when you think about the different diseases, think about you have this big umbrella of dementia, and then underneath the umbrella you have all these different causes vascular dementia, Alzheimer's disease, Louis body and then you could have Parkinson's disease as a particular type of dementia, but not everyone with Parkinson's disease will get dementia.
Does that make sense?
Yes, it does, it does. Thank you so much for highlighting those differences. And I didn't know that dementia was kind of umbrella terms, So that's terrible to know.
Yeah, people always get it mixed up and they think that they're either the same thing. It's just a general term, like you could have a cough, and a cough could because of all kind of different things, right, because you have cancer, you have a cold, So dementia is similar. It's just a general term with many different causes.
So I would imagine since it's been so difficult as a pinpoint a cause for Alzheimer's disease, that means that treatment probably looks lots of different ways. Can you talk a little bit about some of the treatment protocols for Alzheimer's.
Yeah, you know, it's an exciting time for us right now in the Alzheimer's field because we really did not have any great treatment options. I mean we really still don't. But before this year, maybe it was last year. For twenty years, we did not have any new treatments. Everything we've tried was just failing. So before this year, we had two types of treatments that really were only good for like the early stages of the disease. Right, So there were kinds called cholinestorates inhibitors so there's a few different drugs that fall under that protocol. There's a type of chemical in the brain called acetocholine, which is important for memory, and so these cholinesterates inhibitors, they keep acetacholine in the brain, right, and so they help it not break down, so that can help your memory and thinking skills.
And that was really good for people.
In the early and mild to moderate disease stage. And then a little bit after we had that for a while, we started to have another kind that was working on glutamate, which is another chemical in the brain important for thinking skills, and those were called MNDA antagonists, that's the long word for it.
So we had these two different types of medications.
That we were working on, one forcetocholine and one for glutamate. But these were really only helping the symptoms of the disease, right, They weren't doing anything to change.
The actual biology of the disease.
Well, fast forward to I think maybe last year, we had a new drug come out called the Kimbi and this is the first FDA approved disease modifying drug, which means that it's actually changing the course of the disease. So this drug is removing I told you about the amyloid plaques that we have building up. It removes that amyloid in the brain, so that hopefully the people will have their cognition maintained for a longer time. We're still like studying people to see the long term effects of this drug, but it's promising because I say it's one of the first ones to actually change the underlying biology. And also it seems like maybe the clinical symptoms are getting better now. With everything, you know, there's bad and good, right, So this drug has a lot of side effects.
It's super expensive, and it's a lot of side effects.
And the other sort of disappointing think about this drug is that there weren't very many black people in the clinical trial, which you know you find for a lot of diseases, right, but for something like this where there's such terrible side effects and a chance of death, you really want to be able to have people of different racism and ethnicity in the study so that you can assess safety, right and see if the drug.
Works for that population.
Well, we had less than two percent of black people in the trial, so it's really not clear how this drug will work in black people. Those are the treatment options right now, and then there's a whole host of treatment options for like the other symptoms that you see in Alzheimer's. So, like I told you about the behavioral changes, So sometimes people will get on antipsychotics. If they have sleep problems, they might take sleep medications. So there's a bunch of different things that you can do to treat sort of the other symptoms that come with the disease. Then there's a lot of non pharmacological treatments that people are also looking at to see if those might help.
Can you say more about the non pharmacological treatment, Yeah.
So people are looking at things like diet to see if that could have an effect. They are looking at things like physical activity to see if people who are in age and more physical interventions might have a slower rate of decline. Also, I think there's some sleep trials that are just being started to understand if there's something about sleep that could be changed or intervened upon to help with the disease.
So things like that.
Nothing has really worked so far, but we're researchers, so we just keep trying, right, so we find something. There's one trial that was successful, and that was blood pressure control trial called mind Sprint, So they found that really intensive blood pressure controlled treatment seemed.
To help with the risk of mild cognitive impairment.
At least it wasn't significant for Alzheimer's disease, but sort of the precursor to Alzheimer's MCI, so they did find an effect for MCI.
Got it more from our conversation after the break, but first a quick snippet of what's coming next week on TVG. You're also the founder of Every Black Muslim Girl. Can you tell me what inspired you to create the platform.
I realized that, oh, there isn't actually a space for black Muslim women. I realized that there's a lack of community when it comes to Black Muslim women. It's either wearing black spaces and were too Muslim, or wearing Muslim spaces and were too black. So it was birth to almost serve the purpose of the intersection that we live with on a daily basis.
So, doctor Bares, you mentioned the new drug like kimb that the clinical trials did not include a lot of black participants, and we know that kind of is across the board. It seems like with clinical trials, is there something that the FDA looks at in a clinical trial when there is not a lot of diversity in the pool or they're like warnings. Would that prevent a drug from actually passing FDA approval because it's not really representative of the population.
That's a great question. It is outside my wheelhouse. But I will tell you that it must not matter because this drug was approved and it was only two percent, And so I don't know what goes into approvals. You know. I'm sure they must weigh the clinical evidence because it's all based on the results of the trial, right, so they weigh all of that, But when they look at the actual sample, I don't know what they look at because they approved this, and you know, we wrote a paper of an editorial pointing out that we would hope that they would at least put a label on the drug to say that this has not been tested sufficiently in a range of people to really know whether it works or safety effects.
So who knows that they're going to actually do that.
At the very least, I would hope that the describing physicians would really talk to the patients about the risks and benefits of the drug and the side effects and who was included in the clinical trial.
That's really important.
Yeah, that was my next question, like, what is the physician education part if there is no label, right, I guess it's really just on the prescribers to be up to date to know who to prescribe to me exactly.
And right now, I think only neurologists are able to prescribe this drug because it's an infusion that has to happen like every two weeks and you have to have an MRI to make sure that you don't have brain bleeds and things like that that the drug can cause.
So right now it's only.
Going to be restricted use by people who have their credentials, so it's not going to be used in primary care yet. So hopefully neurologists will be well versed in the clinical trial that led to the approval as well as the side effects.
Thank you so much for that. I appreciate you kind of going into that with me. So I want to dig more into your research specifically on black older patients and hear a little more about what kinds of things you found. And we know for a lot of diseases and disorders, black people are disproportionately impacted, So what are some of the findings you think that we should be aware of.
Yeah, I started my work in this area because of what you just said, the fact that we are disproportionately burdened by most diseases, but by this one in particular. It's thought that we are two times more likely to have Alzheimer's disease than other racists and ethnicities, and nobody knows why. And so I wanted to start a study where I could really focus in on older African Americans because most of the research has actually been done with older white people. I mean that's true for research in general, but especially when it comes.
To older adults.
The bulk of the studies, if you look across the literature, has been done with older white adults. They're the ones who have been historically included in research studies. And so I started a study of older African Americans who I've been following since two thousand and four in Chicago. And these are older adults who don't have the disease at the beginning. So we enroll people without dementia, and then we follow them every year, testing their memory and thinking skills, asking a lot of different questions about their life to try to identify risk factors.
We take blood so we can look at genetic.
Risk factors and we follow them over time, and then at the end of their life, some people donate their brain to the study so that we can then look at the brain to relate all the things we learned about when they were living to what we see in the physical brain.
And that's how we're.
Able to discover or to find out what are some unique risk factors that might be causing impairment in African Americans. Because everybody's starting without dementia, you're following them over time. Some people are going to get dementia eventually, right some people, and so then you could really see like what were the factors that were different in people that led to dementia. So we have found some really interesting things in the study. And I was particularly interested in things that are really important for being black in the United States. So one of the things that I looked at was early life experiences of going to segregated schools. So everybody lives in Chicago now, but we know that during the Great Migration, people moved from the South to escape the Jim Crow South and come to the North for better job opportunities. So we asked people about their early life experiences, where were they born, where were they living at age twelve, whether or not they attended segregated schools, you know, and then for so how long?
So questions like that, and we.
Found that people who were born in the South and who also reported that they attended legally desegregated schools have the worst memory performance, the worst cognitive impairment than their counterparts, even those who were born in the South attending legally segregated schools. So that was an interesting finding for us because we assumed that the segregated schools were going to be worse, right because they had fewer resources. Sometimes there were just one room church and only the teacher had a book, you know, whereas the desegregated schools that's where all the.
Money went, right. But we found the opposite.
We found that the kids who were at the desegregated schools actually when you look at them in old age, they're the ones that are doing worse. And so we think what was happening here is that there's a stress involved right of going to a place, desegregating a school where you're not wanted. We've all seen the pictures of people on the sidelines, throwing things at the kids, calling them names and spitting at them. The teachers didn't want them there, The other white kids didn't want them there. So think about it. You are seven eight years year old child in that environment. Of course it's going to have an impact on you, right, And so we're able to see this impact of this early life stressor fifty sixty years later when they're an older age.
So that was one.
Really mind blowing finding for us that something happening in early life can be such a traumatic experience that it could affect how you age. And of course there's lots of evidence from other groups like the Holocaust you know, survivors, we've seen similar things with that population, so I guess it shouldn't have been surprising, but.
Because there was nothing out there, we were surprised.
Another thing that we look at the experiences of discrimination, So we ask people about how often are they treated unfairly or you know, do they receive poor treatment in stores or restaurants using a validated measure, and we found that people who report more discrimination have worse memory and thinking skills than those who report less discrimination. We also just looked at a general measure of stress. And if we have a scale that measures how do you feel about your life, is it unpredictable, overwhelming? And people who score higher on that scale, they had a faster rate of cognitive decline.
So it seems like the.
Bottom line for us at least is that stress seems to be an important marker of impairment for older black adults. And so we are trying to just now expand that to look at more structural stressors, because right now we've been focusing just on individual level stressors, So things that happen to you, But what if you live in a neighborhood where there are few resources, you don't have access to healthy foods or to parks where you can get physical activity, or there's a lot of crime. How does that affect you as you age and your propensity to develop Alzheimer's disease.
So those are the types of questions we're.
Asking now, Doctor Boynes, is there a use of aces in your work? So the adverse childhood experiences scores? Are you aware of any work connecting that to Alzheimer's.
Yeah, there's a lot of interest in that.
Actually, we actually have it in our study as well, but we have not seen any.
Connections yet with Alzheimer's.
But there's a lot of people looking at early life adversity because we know that those abnormal proteins I talked about, the amyloid intel is actually building up in your brain years before you see any clinical symptoms. So probably as early as late thirties and forties, you're already getting this accumulation of amyloid intae, right, And so as suggests that whatever is causing the build up is probably happening way before your sixties and seventies, right, So focusing in on early life is probably a really good thing to do. And so people are starting to look at this adversity these ass to see if they might have any connection.
I will tell you in one study that I published.
I found that older black adults who reported more adversity. It wasn't the ass that we used, but it was a skill asking about how much food they had when they were younger, if they ever went hungry, what kind of cognitive stimulation they had in the home environment, and their financial situation when they were young.
We found that.
Older black adults who reported more adversity actually had slower rates of decline when they were older and So that was curious, right, because it's like, why would more adversity be better for you?
But it wasn't that it was better for you.
What we really think is that it probably is a selection effect. So people who experienced a lot of acess they probably die earlier, right, because aces are related to cardiovascular disease, so people are having strokes or heart attacks, and so if you die, then you obviously cannot be in a study of older adults, right, So we're probably studying people who are relatively resilient. They went through all these terrible things that we know older adults went through and they're still.
Here, right.
So I think this probably is a connection with asis, but we just have to have the right sample to see.
It, doctor Boynes. As you're talking, it also feels like there is likely a connection between trauma and Alzheimer's disease, I think.
So there's different kinds of trauma, right, So people are interested in racial trauma, but there's all other kinds of trauma too, and so it's hard to do this though in human research, right, And you can never do an intervention because you can't expose someone to trauma. That's just not ethical. It really is sort of restricted to studies that ask about experiences of trauma, and then you have all kinds of things that come into play there, like recall bias, or that maybe some people that have repressed the trauma and they're not reporting exactly what happened. So until we figure out ways to get around those kinds of things, it is a hard area to study. But I think it's fascinating and it probably will yield some really good answers.
For us conversation after the break, and I'm curious to hear more about your recruitment process. So these are people that you have been studying and working with since two thousand and four, and you're saying some of them have actually donated their brains to the study. Can you talk about how you cultivate a relationship that's so long standing and that they would trust that they could donate their brain to the study.
Yeah, So before I started the study, I actually worked in the community just to build relationships and build trust, like you said, because as we know, there's a history of abuse when it comes to research with black people, and so even though I'm black, I had to prove myself right because I work at a white institution, and so it's not like I just came in and.
People automatically trusted me.
So I spent many, many hours in the community giving presentations on healthy brain, aging, memory laws, Alzheimer's disease, working at healthfares, doing memory screens for people, hosting meetings, going to meetings, whatever the community needed. I was there with my team so that we could really learn what people were interested in and really get to know people. And so over time I was started to be invited to like different events, different churches, different senior buildings to give these presentations. And so after I'm doing this for maybe about a couple of years, I think when I tried to go in for my first grant, I had to have letters of support, and I went back to these organizations and I got all these letters of support saying, yes, well, we'll support your study. So when I got the grant and I started recruiting, I got two hundred people in the first year, which was like amazing, right, So they just continued to grow over time. And so at first I was not asking for brain donation because I still want to like just get to know people and get them to trust me. And so it wasn't until probably about maybe the second time I got refunded.
Because I've been refunded for the study.
The grants happen in five year cycles, so I'm now in year sixteen to twenty. So during the second cycle is when I introduce brain donation as an option, because you know, when you look at the literature, there's virtually no studies looking at the actual brain in black people, and so we all know that race is a social construct, so we don't think there's any difference physically in the brains, but we do think that there are experiences, the ones we've been talking about that happen that can cause different things to happen in your brain. So you have to really be able to see the brain itself to be able to measure those underlying pathologies.
But there's nothing like that in the literature.
So I just started talking to people about what we don't know and what we need to know, and how most of everything we're learning has been learned in white people.
We don't know if the same thing's going to.
Apply to us, And so people started to get interested in that, and so we have a form that you can sign saying that I'll give my brain to you when I die as a gift and we don't really need anybody else to sign it because these people don't have dementia yet, so they have the capacity to make these kind of decisions. But who's going to call us when they die? We have to have a family member.
Call us, right, So we learned the hard way that it's not enough just to have that form signed.
You have to actually be able to make sure that the person has talked to their next pin so that person will cause at the time of death. And so that has been happening now and so we have about one hundred and fifty brains from people who've donated over time, which is more than anyone else in the country has. And we're continuing as people age to get these brains. But it's a very challenging process and one that just requires lots of education and lots of diet law with families and with the participants.
Got it? Got it? And are you collaborating with other research teams who want to study other things? I mean, could you have this whole collection of brains now?
So with that process, absolutely, So when people sign their informed Consent form, which is, you know, the form that says you will be in the research study we talk about that. We will share the data with other investigators who are approved by US, and so if people agree to that, they can opt out if they want to. If they agree to that, then all the data go into a repository. Everything is deidentified, so no one's name is on there.
You can't connect the information to any person.
But we have investigators who might be interested, say in diabetes, So they'll go to our website, they'll sign up, they'll give us a proposal for what they want to study, and then we'll have a committee vote on it. And then if it's a reasonable scientific question and they have the right team, we'll give the data so that they can examine their question.
Us.
We've been following people for twenty plus years. We have all kinds of information on them, and we have their blood, we have their brain, we have all the information they gave us about their life, their thinking skills.
So all kinds of people are coming to us.
So my studies now has supported I don't know, hundreds of other studies that are interested in black people and different disease outcomes.
Got it. Thank you for that, doctor Boynes. So I want to shift gives a little bit to talk about the impact on the family after an Alzheimer's disease diagnosis. And I know we sometimes see in the media where people will have periods of lucidity even in the background of Alzheimer's disease. Is this something that is common in What makes that happen like that there will be periods of clarity?
Yeah, I don't think we fully understand that process. It is common, but as I said before, the disease is so variable from person to person. It's really hard to paint a picture of what is common in this disease. But it's probably, you know, something to do with how the pathology in the brain is spreading throughout the brain, and so depending on what parts of the brain are damaged or how much resilience a person might have, which is, you know, you might have the pathology, but you still have some other factor in your brain that's offsetting the effect of the pathology.
We don't know what that is yet.
That's a black box and people are studying to try to understand what are these resilient markers that allow people to have this huge build up of pathology but.
They don't have symptoms.
Right, So the lucidity part probably has something to do with just where the pathology is happening in the brain and just these moments of clarity that come out of the blue that we don't understand at all.
And so there's lots of research being done in that area.
That's not my area of research, but I know that there are people who are trying to understand what's happening and can they use those moments of lucidity to try to be a target for other kinds of research or maybe some drug treatments to look at that.
So it's an active area of research.
And can you talk about the impact on families. So you've talked about like a lot of these behavioral changes. You know, it sounds like there is a huge adjustment depending on the pathology presentation for somebody impacted by Alzheimer's disease. What kind of support exists for families and what kind of support do you think that they typically need to help a patient.
Yeah, that's a great question.
So I think there's a lot of work being done on caregiving for Alzheimer's and black families. You know, it tends to be informal family support, right because there's research showing that we don't tend to use more of the formal supports because it costs money, your assurance might not pay for it.
You know, are other cultural.
Reasons why we want to take care of our loved ones at home. The support in families tends to be informal caregiving support, like if it's a husband and wife will be with a spouse, or it could be the grown kids, or it might be another relative in the family. So that's sort of what the support looks like. But there's a lot of actual structure support that people can use that we tend not to use. I think one place that I always tell participants that people in the community.
About is the Alzheimer's Association.
They have a twenty four hour hotline for caregivers or for anybody who has a question.
People can just.
Go to the website Alzheimer's Association and see what that phone number is. All over the country there are these Alzheimer's Association chapters and they have support groups. They have different activities for people with dementia, and they can point you tobe places like there might be daycare centers for people with Alzheimer's so that a caregiver can give a few hours of respite because caregiving is very, very tough for a person with Alzheimer's disease, because it's a around the clock kind of thing depending on what stage they're in, and so being able to get some rest and take care of your own health is really important. So I think if people can reach out to these kinds of organizations, they can get the support in their area wherever they live. And I think just getting support and getting education about the disease itself and what to expect is really important. I think the other thing that happens in our community is that we tend to go undiagnosed because we think that memory loss is a normal part of aging. How many times have you heard, Oh, that's just grandma, she's just losing her mind, or she's just c nile. We still have this myth that memory loss is normal.
It's not.
You could be ninety ninety five and still be sharp as attack and have your memory in tax. So I think because we think that it's a normal part of aging and that there's nothing that can be done, we don't go to the doctor when we start noticing something.
So when you start.
Noticing that mom is repeating the same thing over and over telling you the same story over and over, or misplacing things more, forgetting to pay bills more.
Those are early.
Signs that you should go get checked out. It may not be Alzheimer's, it could be something else. But if you just wait, then you know. The drugs that we do have, they don't really work well as a disease progresses. They're really better for their early stages. And so I think getting checked out early is what's important. As soon as you start noticing something it seems different than how it used to be, that's the time to call the doctor.
Yeah, and doctor Barnes, who makes a diagnosis of Alzheimer's disease is that a primary care physician is a neurologist involved in that diagnosis.
A lot of times a primary care doctor can make the diagnosis nowadays if they have the education and the information about the disease. But oftentimes it's done in a memory care center, so it could be a neurologist, or it could be a geriatrician or even a psychiatry, so someone who has some experience and expertise in dementia can make the diagnosis because it really is a process where you get neuropsychological tests, You get a brain scan, you get a bunch of blood tests to rule out other causes of dementia.
So it's a full blown.
Process that happens, and oftentimes in primary care there's not enough time to do the full blown so they might do like a mini mental screen right to see like what your kind of status is. But then if they suspect something, they should then send you to a neurologist or a geriatrician.
Got it, And you've talked about it's difficult to pinpoint the causes. So I don't know that there are any like protective kinds of things or preventative kinds of things. I feel like I've heard stuff like puzzles and like keeping your mind start maybe as a protective factor for the umbrella of dementia. Yeah, are there things to be mindful of or preventative steps people can take against Alzheimer's?
Yeah, I think so. I think prevention is really the key, right.
I mean, although most of these things have just been shown in observational studies, and the intervention studies need to still be done or be done better. But there are definitely some things that we are finding that seem to be a lot of evidence to suggest that it's helpful. So, like you mentioned the puzzles, right, it's really more of cognitive stimulation that seems.
To be important.
So people who read more books, do puzzles, board games, or anything that keeps your brain active. Those things tend to either push back the onset or slow the progression of decline. Physical activity has been shown, so people who are more physically active, probably because it helps with your vascular system. Right, even something simple as walking. We're not asking people to go to the gym, just walk, get up and move your muscles. That seems to be helpful for protecting your brain help I would say. Also, we know that taking care of your numbers if you have high blood pressure, if you have diabetes, you have high cholesterol, making sure those things are treated and intact the numbers are low, that seems to also be helpful. Diet we just ran a diet trial and we did not get an effect, unfortunately, but we found that both diets got better. We were testing a specific diet, so the specific one we were looking at did not show any benefit over another diet. Both diets caused people to lose weight and everybody got better. So we think that there's something about eating healthy that's important for your brain. So making sure that you're not eating those fast food and fried food and lots of sweets and.
Things are not good for your brain. You can look that up on the internet.
So definitely healthy diet, and then get enough sleep because we know that the sleep process is where the memories are consolidated. So it's something about having disrupted sleep that seems to damage your brain. So I think those things cognitive activity, physical activity, diet, sleep, and then minding their health numbers. And then I have to put a plug in for stress because that's what our research is finding. Making sure that you are managing your stress. A little stress is good, right because it gets you going, But having an overwhelming amount of stress where.
You cannot cope, that definitely is not good for you.
So finding ways to cope with stress, to manage stress probably is also a good preventive measure.
Go D Thank you so much for sharing that, doctor bo Is. This has been such incredible information. I know our community is really gonna appreciate it. Can you tell us where we can stay connected with you? Do you have a website or any social media handles you'd like to share?
Yeah? So I'm on an X as it's called now.
Be Young forty is my handle, and so you could always hit me up there and then you could find me.
On my email too.
Is l Barnes the number one at rush dot edu and LinkedIn to so we can find me on LinkedIn.
We'll be sure to include all of that in the show notes. Thank you for spending some time with us today.
Thank you really great, Thank you.
I'm so glad doctor Burnes was able to share her expertise with us for this conversation. To learn more about her and the work she's doing, visit the show notes at Therapy for Blackgirls dot com slash Session three eighty two, and don't forget to text this episode to two of your girls right now and encourage them to check it out. If you're looking for a therapists in your area, visit our therapist directory at Therapy for Blackgirls dot com slash directory. And if you want to continue digging into this topic or just be in community with other sisters, come on over and join us in the Sister Circle. It's our cozy corner of the Internet designed just for black women. You can join us at community dot Therapy for Blackgirls dot Com. This episode was produced by Elise Ellis and Zaria Taylor. Editing was done by Dennison Bradford. Thank y'all so much for joining me again this week. I look forward to continuing this conversation with you all real soon. Take good care,