TRANSCRIPT

Dementia Rates Highest for African Americans: Tips for Equitable Care

Interview with Dr. Vonetta Dotson

(Podcast #012)

Please forgive typos. Transcripts are created by an automated service.

Dr. Regina Koepp  0:00  
I am delighted elated, ecstatic, over the moon  to be interviewing Dr. Vonetta Dotson, who is a neuropsychologist based in Atlanta, but also working with NASA. today Dr. Dotson will be talking with us about African American families and dementia disorders. And we'll be talking about disparities that exist for African American families and then what African American families can actually do about the disparities.

I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the Psychology of Aging podcast to answer some of the most common questions I get about aging: questions about mental health and wellness, changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy groups, no topic is off topic, we just have to have a healthy way of talking about it. So if you're an older adult or caring for one, you're in the right place. Let's get started.

I'm so excited. Thank you for joining us today, Dr. Dotson. And let's jump right in. Can you talk a little bit about disparities for African Americans and dementia diagnosis and kind of all things related dementia?

Dr. Vonetta Dotson  1:28  
Absolutely. So thank you for having me. Definitely happy to be here. And it definitely is a concerning issue when it comes to disparities and in dementia. The research shows that African Americans are two to three times more likely to be diagnosed with dementia, and at the same time are less likely to be adequately treated or to be diagnosed on time or if there's no ideal time, so it's later diagnosis as well as less access to treatment. And so there are a number of complicating factors when it comes to that, that some of which are addressable, and some are not. So, in terms of trying to understand why is that increased risk there, there are a combination of biological reasons, societal reasons, as well as sort of cultural things that all sort of contribute together to lead to this increased risk that we see.

On a biological standpoint, there are a number of medical conditions that increase the risk for dementia that are more prevalent in the African American community. So things like heart disease, high blood pressure, obesity, diabetes, those things are all unfortunately more common in the African American community. And we know those things are tied to dementia risk. On the positive side, those are all things that can be treated, and so there's something again, that can be done to try to minimize that risk. But we do think that that's part of the reason why that health disparity is there. There's also, interestingly, more prevalence of the dementia risk gene in African Americans. So when it comes to risk for dementia, there's a gene called APOE. That has been linked to higher risk. And there's a certain variant of that gene called the E4 Variant, and that puts a person at greater risk. And that E4 Variant is actually more common in African Americans compared to other groups. And so again, at a biological level, there's this increased risk.

I'll stress again as I often do that, even with that increased risk from the genes, you can still do things to minimize your risk by having a healthy lifestyle. So it is not inevitable that a person will develop dementia because of that. So on the biological side was the two things that come up medical conditions and genetic risk.

Of course, we have, unfortunately a lot of societal barriers to access to health care, biases from doctors, historical mistakes, mistrust or distrust of medical professionals because of just a long history of injustice that has been done, that can all get in a way of African Americans adequately being assessed and being treated and getting the proper care that they need throughout their life leading up to the diagnosis and then even to the point when they start to develop symptoms. So societal influences come into play as well. And then there's on the cultural side, there are certain sort of cultural beliefs that can sometimes work against getting diagnosed and treated, whether that being, again, the understandable mistrust of healthcare providers, a stigma against mental health, or just an overall acceptance of saying, Oh, you know, Grandma, she's getting old and senile, as opposed to understanding that this could be something that's not inevitable or they actually can be treated as opposed to being the inevitable consequence of getting older.

Dr. Regina Koepp  5:13  
This is so important if it's two to three fold, right? Yes. That's not all biological.

Dr. Vonetta Dotson  5:20  
That's the thing. Yeah, even the parts to consider biological are really things that have to do with lifelong access to health care and healthy food and, and, you know, healthy neighborhoods or neighborhoods that have less pollution and you know, all the things that we know that kind of get into it. So it really is it's so sad. It's one of those things that's heartbreaking. And I hope things change. I hope that as people are paying more attention to the issue across different disciplines, because everyone kind of needs to work together to get to it. But there's just so many factors. It's almost like this big behemoth that has to be addressed. So trying to get to it.

The more you and I can both keep doing what we're doing, and to try to help with it, but we just need more of us out there.

Dr. Regina Koepp  6:07  
Yeah. And that this is not the responsibility of African American folks to correct this system. And this problem. It's the responsibility of all of us and the system and the system that created these problems in the first place. And then I also read another study that African Americans are less likely to be informed by their provider that they have dementia. And maybe that's due to not being given adequate testing. Due to racism related beliefs about pathology, folks are kind of kept out of the medical system. Once they go in, it's further down the road in the disease process. It's all the resources that could have helped earlier even like with Medicaid and home health care and Adult Day programs and all these kinds of resources for missed out on because the early diagnosis wasn't there, which is why it's so important that we're having this discussion today. So we can raise awareness and then help families get adequate treatment.

Dr. Vonetta Dotson  7:07  
I 100% agree. And it is one of those things that the literature has shown across different medical specialties, that a lot of times, symptoms reported by African Americans are interpreted differently, sometimes disregarded. Sometimes misattributed to maybe lifestyle behaviors that the person could have that's causing the symptoms. So, as opposed to someone having like true memory problems, and it can be assumed that Oh, they're just taking drugs or they have been drinking too much. And we do know those things can over time cause problems, but that doesn't mean the person doesn't also have something going on. So a lot of times misattribution of symptoms can lead to under diagnosis of variety conditions met, it's been shown for a long time and across a number of different conditions. And then you brought up a really good point about once once the person gets diagnosed, it can be so late in the process because there is not that early detection. And early detection is really important for dementia because particularly when we think about Alzheimer's disease, which is the most common type of dementia, there's a window of opportunity for the medications that we have to work. And the medications don't cure the dementia, but they can certainly slow down the process to some degree and some people and it can buy some time for the person to be able to enjoy life a little bit more set their affairs in order and that sort of thing. So when you have someone who is a group of people who are consistently getting missed, and are missing that window of opportunity, it means that their outcomes when it comes to their dementia process is going to be so much worse and so much harder on the caregiver. And then it creates this vicious cycle because as the caregiver is more distressed and overworked then the are able to provide less adequate care for the person who then has these behaviors and decline that makes it worse on the caregiver. So trying to find a way to minimize those effects and to stop that cycle is a really important endeavor.

Dr. Regina Koepp  9:22  
So important. And so what would you say then, since there are these disparities that are clearly reported, clearly research, nobody can argue with them. What would you say? How would you recommend that African American families then if they're concerned about an aging parent, for example, I know that the system has to change to mitigate the disparities. But while the system is changing, that's going to take some time. What can the families do then to make sure that their loved one is getting equitable care and treatment?

Dr. Vonetta Dotson  9:57  
That's a great question. I think probably two main things are to be proactive and to be informed, and those kind of go hand in hand. So I think I'll start with being informed. I think the more information and awareness is out there, the better, which is, again, why it's great that you're doing this program. And so many other groups are trying to bring attention to this. I think being aware of what does aging look like normally, and so then it's a person can be more aware of if something is off. So not dismissing, you know, these memory problems that progress to saying, Oh, that's just normal memory. If you're not sure, it's better to go get that checked out. And so most people when they have concerns go to their primary care doctor, and that's fine, except for the fact that sometimes primary care doctors will give a really brief you know, three minute, cognitive screen and then interpret that as meaning that you're okay or not, okay? And that's not going to be the detailed assessment that you need. You really need to think about this is a specialist kind of question. And that would usually mean in the in the physician world, a neurologist, but on the psychologist world that means someone like myself who's a neuropsychologist, and not to shamelessly plug my own field. But what I think is good about neuropsychologist is that we bring to the table, the knowledge of the brain and how it changes that a neurologist might have, but also the background human behavior that a psychologist has. And we're able to integrate or combine the information from the different health professionals that a person might see. But then also do a full and thorough assessment to be able to see where does the person stand in terms of their memory, their language, their visual spatial skills, all the different thinking skills? Are they performing at a level that's much lower than we would expect for someone from their background. And that can give us a window into the brain to be able to see is something going on that we wouldn't want to intervene and and try to treat. So having that, that stance of Let's be aware of when things are not so much looking normal. And knowing where to go is a really a big part. And then going back to the idea of being proactive. Sometimes and I say this to anyone, if you feel like you're not getting what you need from your physician, ask more questions, do your homework, you know, there are some reputable websites that I think can be useful sources of information. I don't recommend going on blogs and from random people who don't have the credentials, but certainly websites like the Alzheimer's Association, the National Institute on Aging, the Centers for Disease Control, you're going to get science based information that can help you and then you can go to your doctor and say, Hey, this is what I read about. I'm concerned about this and make sure that they answer your questions. If they're not, you can consider getting another opinion. You want to make sure that you are being an active consumer of your health care. That's a really big important point.

Dr. Regina Koepp  13:11  
If folks are interested in learning more about normal aging and brain versus dementia, I have a dementia 101 Guide that walks folks through so you can just download that from my website. It's www.drreginakoepp.com/dementia101, and you get that guide and it gives you all the information that you need for what's normal aging brain look like versus a brain with dementia. What to do if you're worried that your aging parent has dementia, the steps of getting your parent to see their physician and as and and I'd say take care notes of your observations. So what are you observing in your loved one, what's different than the way that they used to be? In that guide, I give you a list of what you make a list of what your observations are. And what you're noticing is different to take to the doctor, so that you have a guide with you.

Dr. Vonetta Dotson  14:20  
That's really great. That's a great resource. And it's, it's wonderful that you have something about taking those observations. Because on my side, when I see someone for an assessment, and their family comes with them, some of the most useful information I get is there is the history. It's knowing about what has been changing, how quickly has it been changing? What does it look like, what's different than before? And that can be extremely helpful in terms of trying to see a timeline of when changes happen, because sometimes that can help to distinguish between something like dementia versus something like the person just moved from a different place and they've been lonely and isolated and became depressed and started having memory problems that might be a little bit different than someone who's had no real triggers, but has been over time to slowly progressing, which might have been more concerned about something like dementia. You're saying get informed about dementia, you're also saying get informed about the different types of providers. A person could say you could simply go to your primary care and rule out some medical conditions, but they're not experts in neuro psychological testing or neurology. So you might advocate for a referral to a neurologist and neuro psychologist, a neurologist will sometimes have a neuropsychologist connected. Sometimes not they might have a psychologist do some tests with them, and sometimes neurologists pair with neuro psychologists.

Dr. Regina Koepp  15:56  
And then now let me ask you truly Dr. Dotson, would you suggest that a person see neurology AND neuropsychology?

Dr. Vonetta Dotson  16:07  
I would, there are some neurologists who behavioral neurologist who do some of the testing that someone went to a neuropsychologist, but for the most part, what they do is more medical testing. So the neurologist is great because they'll do you know, neuro-imaging, so maybe an MRI scan to be able to visualize the brain, they can do sort of the lab testing that can be helpful to see if there are any markers in the blood that would be indicating some possible effects, they indicating some things that can affect your your, your cognitive functioning. So if you have low b12, for example, that might look like dementia that's more progressive like Alzheimer's disease, when in fact and once you address that reversible nutritional deficiency, then you're okay. So the neurologist is going to be really great for those sorts of medical testing that can help to rule out different causes of cognitive and memory problems. However, the neuropsychologist has a different take on it that I think is a great compliment. And so ideally, people can see both because neuropsychologist are the experts in the cognitive testing those paper and pencil and sometimes computerized testing that we give to really probe the brain and and understand how different parts of the brain or networks in the brain are working by being able to see what your skills are your thinking skills, and we do that in much more depth than undergrad neurologists typically with do. We also get much more detailed information about a person's history, all the contextual, there's about their life, as well as their current functioning, that we can put together with information from the neurologists, to have a fuller picture. And so you think about a puzzle that are all just gives you some pieces. The neuropsychologist kind of brings in the rest of the people to see the whole picture in a better way. And so I would definitely recommend both. Some people start with a neurologist, but I think for getting the best comprehensive care, a neuropsychologist is very important. And we also tend to do more in terms of detailed feedback and recommendations and referrals to other resources in the community and other professionals that can help with the different aspects of the person's life that can be either increasing or decreasing their risk for further decline.

Dr. Regina Koepp  18:39  
Yeah, and for African American folks in particular who are left out of conversations and out of healthcare, advocating for the Comprehensive Assessment. I think it's really important.

Dr. Vonetta Dotson  18:53  
Definitely. I think that that's so important.

Dr. Regina Koepp  18:57  
Now, so say then they have a diagnosis of dementia and an African American family is going along and treatment. How would you recommend that families continue to advocate or work together with their healthcare team to make sure that they're kind of mitigating all of those risk factors for disparities? So you were you were saying that there are societal factors, cultural factors and biological factors. So how can then families along their dementia journey, continue to advocate and make sure that they're getting equitable health care?

Dr. Vonetta Dotson  19:35  
Yeah, that's a great question as well. So I think making sure to ask your providers, whether it be your physician, primary care neurologists or hopefully neuropsychologist, asking them about what, what did they consider to be the things that are contributing to the person's cognitive problems, their memory decline and whatever is going down, and then seeing asking them, what can we do about that? So if they say, Okay, this person has diabetes, okay? Is their diabetes under control? What else can we do? So asking about each of those different things, impact the person and making sure those things are treated, asking for referrals when needed if there's a specialist that needs to be seen. If someone is having severe depression or severe anxiety, then making sure they get a referral to a psychologist or possibly to a psychiatrist if medication is needed, if the person's having a lot of hypertension, high blood pressure, high cholesterol, what have you see getting a referral to a cardiologist. So just making sure that you get the specialty care that you need to meet and that all those people are in communication. But you don't want to have this different doctors, you know, five different doctors who don't know what's going on with the other doctor. Because having that information across doctors will help free to have that truly and agree that care and having a primary doctor who's your point of contact is also important. If someone's getting older I think seeing a geriatrician actually is really important because they're going to have more sensitivity to this to this need of integrated care and of the special needs of someone as they're getting older. So I would actually recommend that a geriatrician be the primary care doctor and the person get copies of the notes from all the other physicians, even if there's being seen in a different healthcare system, so that they can put it all together and be able to provide the best care and help you as you're advocating for yourself.

Dr. Regina Koepp  21:40  
Yeah, that is great advice. I love that. That is so important. The other thing like you're saying is to help with that integrated care and holistic care, I think is to ask questions about how does diabetes affect dementia? How does high blood pressure affect dementia... so that your own thinking becomes integrated as well. And I think your idea, your recommendation about having the point person be the geriatrician, perhaps having a list of questions for the geriatrician to help integrate all of that. Maybe the geriatrician could talk with the family about how all of that works together.

Dr. Vonetta Dotson  22:21  
Definitely. And the more you go in with questions already formed...when you're in the middle of a situation is easy to forget. So right, they're going they're prepared, and don't feel hesitant to ask them because that's the reason why they're there. And so I think sometimes people feel you know, the white coat syndrome and they slip need to kind of just defer to what they say and bring up No, you go in and you advocate for yourself and for your family member, whoever you're caring for and and be be assertive and in a good, be assertive and be informed. I think that's a really important part of it.

Dr. Regina Koepp  23:00  
I also think if there are cultural needs, like so say our family works best if we're able to have a family meeting if our if there are language needs. So if your family doesn't speak English as a first language request to an interpreter, things like that could be very helpful as well in terms of advocating for your needs and your loved ones needs and making sure that you're getting all of the information you deserve.

Dr. Vonetta Dotson  23:28  
That is so important. And knowing if there's anything extra that you need that maybe is thought to sort of default that the doctor provides. But that doesn't mean you can't ask for it. Making sure that you know what your needs are and that you ask for them. And if they can't help they help you find the place to be able to get the help that you need.

Dr. Regina Koepp  23:50  
Yeah, any other thoughts about the significance of dementia care and diagnosis related to African American families?

Dr. Vonetta Dotson  24:00  
I think the one thing that I would add is that I think it's important that in addition to being your own advocate or advocate for your loved one when it comes to your health care, but also being empowered when it comes to what's done in your own life, to be able to slow down or minimize your risk for cognitive impairment and dementia, I think that in general, the word has not fully gotten out about what we can do lifestyle wise to be able to protect our brain as we age, but especially in the African American community. I think more awareness needs to be out there that you can do things actively, regardless of the medical care that you're getting. You can make healthy choices that can reduce your risk of having problems. So finding ways of doing things such as getting regular physical exercise, making sure you're connected with other people and staying social, making sure that you're using your mind and not Just kind of being passive and doing things that don't require you to sort of think and learn new things. So I think the more that you try to have those healthy lifestyle behaviors, the more that you're doing for yourself and that's another way of advocating for yourself because you're, you're your own sort of healthcare provider in that regard. So I think that knowledge and then just being creative about how to do that, you don't have to have a lot of money, you can go for a walk, that's free, hopefully the weather's good. If not then make it to a mall and walk back and forth. And that works. That's gonna still be effective. Even if you don't have access to a gym or a personal trainer or that sort of thing. Making healthy choices with eating can still happen. And there's various ways of being able to get that at an economical cost. So trying to think outside the box about the things that you can do to improve your overall health and your brain health I think it's really important as well.

Dr. Regina Koepp  26:02  
Oh, wonderful and mental health care and health care.

Dr. Vonetta Dotson  26:05  
Absolutely.

Dr. Regina Koepp  26:07  
Which also has some disparities and we can begin to shape those or reshape those as well and promote equitable mental health care for everyone.

Dr. Vonetta Dotson  26:16  
Wholeheartedly agree.

Dr. Regina Koepp  26:18  
If you liked this episode, be sure to subscribe, so you'll be the first to know when new episodes are released and then leave a review subscriptions and reviews help people to find this show. And wrapping up, it's important to share the information shared does not take the place of licensed medical or mental health care. See you next week, same time, same place. Lots of luck to you and your family. Bye for now.

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