Amanda Smith, MD, director of clinical research at the University of South Florida USF Health Byrd Alzheimer’s Institute and memory disorder specialist trained in geriatric psychiatry talks about racial disparities in Alzheimer’s clinical studies as well as warning signs and resources.
Talking about Alzheimer’s and some of the disparities in the minority community when it comes to clinical trials. Can you walk me through some of the numbers?
Dr. Smith: We know that there are a lot more people of color with Alzheimer’s disease than come to memory clinics or participate in clinical trials. 90-plus percent of research participants are white non-Hispanics and in order to really find out if a treatment works, we need to find out if it works in all people, not just white non-Hispanics.
Why in your opinion is there this disparity? Why is there a mistrust or unwillingness?
Dr. Smith: Well, I think there are several reasons. One is, you know, a very well-deserved mistrust of the medical community. There are some historical events like the Tuskegee Syphilis Study that stands out as sort of the worst example where people were watched with syphilis when there were treatments available for them. Treatments were withheld just so they could observe how the disease progressed and that was done without their consent. It’s horrible. And, if it were done in this day and age, those people would be in prison and deserve to be. But because of that, there’s a lingering hesitancy to participate in research despite the fact that there are many state federal and international regulations that now govern research that would never allow such a thing to happen again.
So, mistrust is one reason.
Dr. Smith: Mistrust is one reason. Another reason is in some cultures there’s sort of a misconception that dementia is a normal consequence of aging. So, people don’t necessarily seek help for it because they think it’s kind of normal, especially in multigenerational households where it’s natural to take care of grandma and help her to the bathroom when she gets confused. It’s not really seen as a disease. So, people don’t necessarily seek help until much later in the illness when there’s less opportunity to help them and also less opportunity to participate in research.
Are there other factors?
Dr. Smith: Although it’s obviously not true for all people of color, some are at a socioeconomic disadvantage. So, it’s harder to take time off from work and come to research visits. Transportation is sometimes an issue, getting to the centers, particularly in big cities where it can be expensive to find a place to park, or there are not bus or train routes that are convenient. And, that sometimes keeps people away.
What can be done to get the word out? And first of all, why is it important to make sure that there is equal representation, that more people of color come forward and participate in studies?
Dr. Smith: Well to know that a treatment works in all people, we have to test it in all people. We know that there are sometimes environmental and genetic differences in people that affect the way drugs work. We’re talking about for blood pressure, for cancer and certainly, that may be true for Alzheimer’s disease and related disorders, as well.
What can be done and what is being done to get the word out?
Dr. Smith: I think there are a few things we can do. One is education. Helping people understand that Alzheimer’s is a disease process and that the earlier we intervene, the more we can help preserve function and cognition. Also, helping educate people about the safeguards that have been put in place to protect research subjects. Knowing that it is completely voluntary, that nothing will be done to them without their consent, and that they can stop at any time for any reason or even no reason at all. Also, we can also make ourselves more accessible to the community. A lot of times we expect people to come to us, but there are things that we’re doing now in terms of community outreach. We have a mobile research unit here where we can go out into communities and conduct trials there rather than expecting people to come to us. And finally, as a field, we are trying to get more people from different diverse backgrounds involved in doing the research because people are much more likely to come in when they see someone that looks like them.
Are there trials that people who are sitting at home who may see the say, ‘Okay, maybe this was in my family, maybe I do need to go forward and get involved.’ Where can they go to get information if they do decide, ‘hey, it’s time for me to get involved’?
Dr. Smith: There are a lot of wonderful resources out there. Clinicaltrials.gov, which is the governmental website that all clinical trials on any disease are listed. You can search by what illness you suffer from and location, and it will give you a list of projects and a list of sites that are nearby. The Alzheimer’s Association has wonderful resources on their website about participation in clinical trials and they also have a thing called trial match, where people can sign up and then get matched with trials that they fit criteria for. There are several databases online where people can enter just brain aging kind of stuff. There’s a few of them, but they’re all sort of connected. I can’t recruit for one particular one. But, the Brain Health Registry is one that’s based out of the University of California San Francisco, https://www.brainhealthregistry.org/ and there are several other national databases. The APT Web study is another one where people can sign up and they can take certain cognitive tests at intervals. If they meet the criteria for a certain study, they can get routed to a site near them and go through a screening for an actual project. https://www.aptwebstudy.org/
Are there any that are geared specifically toward a minority community? Do you know?
Dr. Smith: There are some registry projects at places like Duke and Indiana for this, but these are focused more on local recruitment.
How can someone sitting at home get a better sense of whether this is a normal aging process or something that really needs to be looked at?
Dr. Smith: So, we all have little changes as we get older. We all walk into a room and don’t remember what we went in for. We might misplace something or have trouble coming up with someone’s name that we run into but haven’t seen in a while. But those are the exception rather than the rule. It’s when those things start to happen more regularly then you might become concerned. Or if someone is starting to have difficulty really coming up with words in a conversation or is starting to dress a little bit differently or not take care of their personal hygiene as they might have in the past. Sometimes it’s struggling with bills or difficulty banking or getting late notices that you never would have gotten before. When there’s a change, it’s always worth investigating.
Is there anything I didn’t ask you about this particular topic that you want people to know?
Dr. Smith: Well, I guess the only thing that we didn’t really talk about was the difference in risk factors. For example, African Americans and Hispanics are twice as likely to end up with Alzheimer’s disease than Caucasians. That is partly due to cardiovascular risk. The same things that are risk factors for heart attacks and strokes. Diabetes, high blood pressure, high cholesterol are risk factors for Alzheimer’s as well, and those things tend to happen at higher rates in certain populations. So, taking care of cardiovascular risk and protecting yourself against heart attacks and strokes can also be very helpful and preventive against Alzheimer’s disease.
Are you able to address the CTE and concussion with possible links to Alzheimer’s and dementia down the road?
Dr. Smith: So, we do know that repeated head trauma is definitely a risk factor for developing both CTE (chronic traumatic encephalopathy), as well as Alzheimer’s disease. In the brain, both share a pathology of a certain protein called Tau, that builds up. But for a long time, we’ve known that many of the people who have a head injury with loss of consciousness at any point in life are at higher risk of developing Alzheimer’s, specifically later on. A lot of the research with CTE is being done by the NFL and funded by the league, and they’re doing wonderful stuff, it’s just not as widely studied in the general population.
Interview conducted by Ivanhoe Broadcast News.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
If you would like more information, please contact:
Kelly Rodrigo
Lead Research Coordinator
USF Health Byrd Alzheimer’s Institute
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