Getting AHEAD of Alzheimer’s with Inclusive Clinical Trials

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. I'm very excited for today's episode. I'm here with Ms. Carol Turner, the first African American in the nation to participate in the research trial called the AHEAD study. Her journey started after her father passed away with Alzheimer's, and her mom started showing signs of memory loss not long after. She was directed to the Eastern Virginia Medical School team, led by Dr. Okhravi. Today, Ms. Carol is participating not only on advisory boards but also with the research team of doctors, going to churches, letting others know about Alzheimer's dementia, and how they may qualify to be a part of the AHEAD study. Welcome, Ms. Carol. 

Carol Turner: Why, thank you, Nate. Great to be here.

Chin: I'm also here with Dr. Sarah Walter, program administrator for the Alzheimer's Clinical Trials Consortium and the Alzheimer's Therapeutic Research Institute at the University of Southern California. She joins me as well to be the co-host of this series. Sarah, thank you for being here and for being such a strong advocate for research participants everywhere and in every study.

Dr. Sarah Walter: Thank you, Dr. Chin, and thank you Ms. Turner for doing this interview. It's great to see you. 

Chin: To begin, Ms. Carol, can you start by sharing with us about your family's experience with dementia?

Turner: Basically, it kind of started with—on my father's side of the family, his two brothers and sister passed away with Alzheimer's. He's got two additional sisters still here, and they too are now showing signs. That’s kind of started myself and my brother to thinking, "Hey, we might need to check this thing out," and definitely once my mother started showing signs.

Chin: You provided care and have provided care for your mother. Can you share with us what that experience has been for you?

Turner: Well, Mom is in her early stages of dementia, so she's mobile. She can carry a conversation. She doesn't remember a lot so that's where we come in, making sure that she is taking care of herself and the house as well—my husband and I both. We are also making sure that she gets the proper care on a daily basis because she's not able to do a lot of things that she used to do, house-related or even personal.

Chin: With your family history and your direct experience helping with your mother, how does that influence your relationship to the idea of research, or participating in research, or even learning about research?

Turner: Well, I must tell you—it really opened my eyes because I never really thought there would even be a chance to even seek help, knowing what my path might be with dementia and having it in my family. Just to be able to be at the point where I was with Dr. Okhravi on the phone, giving my mom results and letting us know about the research—that alone was a blessing, and it was something that we never thought would happen.

Walter: Miss Carol, can you talk to us a little bit more about, how did you learn about the research study that Dr. Okhravi was running and what were the kinds of questions and concerns you had as you were first thinking about being in a study?

Turner: It basically started once my mom was tested because of her memory problems, tested through EVMS, and we got the results back. As we were getting her results, my mom really couldn't take part in the study. The studies were from ages fifty-five to eighty, so she was past that. He would be treating her as her geriatrician then. He mentioned the fact of a study because my brother and I both were in that age range, and he said there was a study coming in the beginning of the year and asked if we wanted to participate. We immediately told him we wanted to. I mean to be honest with you, we didn't even ask a lot of questions, and we weren't afraid of the fact that we needed—we needed to be in the study simply because we saw my dad. My dad didn't have a nice journey with Alzheimer's. Most people, they’re either bed-ridden, or they can't talk, or you have to guide them around, whatever. My dad was just the opposite. He was vocal. His behavior was not the best. We definitely knew that we needed to get “AHEAD” of dementia. Dr. Okhravi, he was the one that was our savior, basically, here on Earth.

Chin: Ms. Carol, do you feel like then it was appropriate that a clinician—a geriatrician—brings up research in that visit? Because it seems like that was a really important moment for you. Do you feel like that should be done more often?

Turner: Oh my gosh, yes, definitely! How would we know? There's no way in the world. I’ve never had to take part in—I never even researched taking part in a study—it's not because I didn’t want to, I just never did it. I never had a reason to like I did with this one. I think if he did not allow us to be privy to that information, we wouldn’t have known that. I think it’s very important. I think doctors should be forthcoming with that type of information. The thing about it is, my mom’s cardiologist was the one who directed her over to EVMS. It’s good that the specialists and even the primary care doctors—my primary care doctor right now is a part of a research study, and I can’t take part in it because of the one that I’m in now. No, I think it’s very, very important.

Chin: You mentioned that your brother was there at the visit too, and I guess I’m wondering—did your brother or other family members have concerns, or did they question your thinking in wanting to enroll in this study?

Turner: Well, he probably had more questions than I did (laughs), but he was on board with it as well. I think I take more risks than probably any of the siblings in my family. I’ve always done it all my life. I did it in my business. I’m gonna jump on it, and I might ask some questions later, but I’m gonna get on board while I can. We’re kind of different in that way.

Walter: Ms. Carol, can you share what happened next? I know you now are partnering with Dr. Okhravi and you’re doing community outreach. How did that relationship evolve? What made you want to be more involved, more than just being in that clinical trial with all these infusions and memory tests?

Turner: Well, you know what, it’s always good. I mean—even on your job—it’s always good to work with people that you enjoy working with because it makes your job easier to get through day by day. Just like this team. When I started with this team, the care that they gave us, the concerns—I mean, as we were going along, of course, signing the paperwork and things like that, of course I had questions in reference to that point because it was more detailed and there were more things in there that I really needed to understand. They were forthcoming with whatever questions I had. Also, in reference to the testing, everything was plainly explained and I was able to do some of it. They checked with me to make sure that I didn’t have concerns with what I was doing. When I got my PET amyloid results, which came back high—my amyloid count in my brain was high—so that put me on the track that I’m on now, which is every two weeks I go into the infusion center over at Sentara. I will tell you—the team, the team at EVMS as well as Sentara—oh my gosh, you couldn’t ask for a better group of people to make you comfortable with what you’re doing and something new that you’re doing. I never liked needles. I’m gonna tell you, I never liked needles. But this journey has made me endure it, and I’m happy for it. (laughs)

Chin: Well to go from not liking needles to having an infusion every two weeks—Miss Carol, that’s quite a transition for you!

Turner: I know! It’s crazy. (Laughs)

Walter: So, did Dr. Okhravi approach you and ask you to help with community outreach or was that your idea?

Turner: No, I volunteered for it. Let me tell you about that. We call it Purple Sundays, and there are two community workers that they hired for the team that will go out to the churches and let them know what the AHEAD study was all about and invite us in to do presentations. Dr. Okhravi, Dr. Niknejad who's also a doctor in his office, myself, oneAlzheimer’s representative, and there's also Dr. Gibson, who basically narrates through everything and talks about the study. As a matter of fact, I just went to one Sunday. It could be anywhere in the area that we go to. We go in and make the presentations. We have literature, and we basically talk about—in order to really understand what Alzheimer’s and dementia are all about, you have to go and listen to things like this. I've learned more than I've ever known about it. I never even knew the difference—I didn’t even know there’s a difference between Alzheimers and dementia and there is. A lot of people don’t. A lot of people don’t understand that. They go out every day and get things from the drugstore. They don’t read labels. Our community—and that's basically why we go—because the African American community, the data, it's not there. We need more data to make sure that it works for us. We’re going to those churches and we’re getting those individuals educated. If they can't take advantage of it, maybe there’s somebody who can. So, it's like "each one, teach one." You go out and you give out information—whether you could use it or not, they could take it to someone else. That's how we are able to go to all the different churches. It’s a wealth of information, and they're able to ask real doctors and a real participant questions and they do, they do. I’ve had some interesting questions, and I really love it. It’s like a ministry to me because I really enjoy letting people know how to take care of their brain because that's what I’m doing, so why not?

Chin: Well, that leads into my next question for you, Ms. Carol, which is: What types of questions do you or your colleagues get as you go out into the community? What types of questions are you getting when talking about research?

Turner: Well, the risk factor for one thing. Some people ask the risk, ask if I’ve had any kind of reactions from anything, and I haven’t. But let me tell you—November Seventh will be two years for me in this trial, so I will be leaving my every-two-week visits and I’ll be going to once a month. Yay! (laughs) Okay, back on track. They ask questions like—alright, because we know I could either be getting a placebo or the real medicine—and they're asking me, “How do I feel? What do I think about the fact that I’m basically taking a risk because I don’t know what I’m getting?” And basically how I feel, because a lot of them are afraid to get into a study. They kind of want to know the personal side of it.  Once I become a participant, how will I feel? How might I see, as reference to the reactions and things like that? So, that's kind of what they talk about.

Walter: And Ms. Carol, I think one of the stories you shared with me before was really around how you’ll get some questions that maybe people feel less comfortable asking the researcher. And, I think that's one—that's kind of the basis for one of these ideas we have to really work with people that are actively in studies to partner with them, to go out and do community events so that research isn’t as frightening and to make it all more understandable and accessible. So, can you talk about that a little bit? Like, is it your role as this participant that's sharing what it’s like to be in a study?

Turner:  To be honest with you, we see a lot of, like, contests. We see a lot of instances where people are talked about—“They're doing this, they're doing that”—but you really can't touch them. You can't feel them. You can't get to them. No one sets up anything for you to talk to them, okay? It’s always through a third party. So, this is something that—and I also tell people, “You see these two doctors here? They will actually tell you about the study, what goes on in the study, what to look for in the study, and you can ask them anything you want. You see me, who is actually two years in—you can touch me, you can feel me, you can say anything you need to me to better understand and to better feel comfortable with the decision that you’re going to make.” Who could ask for more?

Walter: So, I think just thinking about your experience now, having been in the study for two years, what advice do you have for researchers that want to include more people like you from the African American community?

Turner: I think what we're doing is—you have to get in the community. You have to get in the community, and you have to target those areas like we’re doing, where there’s need, where there’s more participation needed. Just being in the lab or being behind the door—I mean, not to say that the researchers have to do that but you need to have someone who does do it. Someone who’s going to get out there and touch people and be able to bring the information out to them to make them feel more comfortable. That’s the only way that it's going to work. I’m telling you—it’s really working well for us. It really is. We may get a couple of people in one church, and in another church we may get like 10 or 12. I think yesterday, we probably got like nine people. And we’re telling them, even if you don’t have anyone in your family, but if you have a problem yourself with your memory—and in the presentation, it tells you how you can kind of distinguish between normal memory lapses or dementia—if you have any kind of concern, come and get it checked out. You can't do that if you're not right there with them in order to put the point across, to make them feel more comfortable with the decision that they really probably should be making.

Chin: Ms. Carol, in your experience, one, as a research participant who's gone through everything, and then now, two, as someone who goes out into the community to raise awareness and engage on this important topic of research, have you found that there's an awareness among the African American community that you've engaged in with about this absolute need to have more representation in clinical trials and research? Does the community know that research and researchers absolutely need to be engaging in these communities, that we want more participants from these different communities? Are people aware of that need? 

Turner: I don't know if they're aware of it because if it's not put before them, they're not going to search it out. I'm telling you, before this trial I didn't search anything out. I mean, they probably can't be any different than me. The thing about it is, once you hear that it's available, that's when you need to make your way to it. You can't make anybody do anything, but I'm telling you, when we were doing the presentations, you could look in the audience and see the attentiveness. You could see people nodding their heads. One statement was made—Dr. Gibson made a statement. She said, "Do you realize that the COVID vaccine was a part of a trial?" And they acted like they did. So when I got up and did my presentation, and I said, "Then you know that you did not know that.” Nobody knew that. But yet, we all still took it. Some people didn’t, of course, because they're still on the fence. That's the only way it's going to get out. We need more of that. We need more people doing what we're doing. Hopefully, it's reaching, and I think it is because they're getting more requests for churches. I'm pretty sure it's someone talking to someone and telling them, "Hey, y'all need to get this,” so it's working for us.

Chin: Have you come across any hesitancy or concerns about trust? There’s not a good history here with research in the African American community. Have you come across those questions or those encounters where it really is important for researchers to be so transparent and to acknowledge the things that have happened in the past? Has that been a part of your experience at all?

Carol: Well, let me tell you, the first thing we tell them about is Tuskegee—the thing with Tuskegee and the vaccines and things like that—letting them know that researchers are so far away from that era. To bring something that is fully approved, something that is tested and tested and tested, something that they can trust and have faith in. One thing, you have to do that within yourself first. I mean, we can bring as much information to them as possible but they have to trust the process. That's kind of what we talk about—having faith. I mean, these are faith-based people. Having faith that this particular trial is going to help you strengthen your brain, help you know who you are later, because with Alzheimer's, there’s no guarantee you even know yourself. It's going to help you be able to feel more comfortable just to talk to somebody. We're not even telling you that you have to commit to anything, just talk to somebody if you feel that you have a need to, and then we'll take care of the rest. Kate is really the forerunner of the researchers in this trial, so I asked Kate if it would be possible—but I haven’t gotten an answer yet, it might have something to do with privacy laws or whatever—I asked if I could start a support team with the new participants that are coming on, with any kind of questions they might have, since I've gone as far as I have. So, I'm still waiting on the answer for that.

Walter: Yeah, I think that's another thing we've heard from our participants, Ms. Carol, is that it can be quite lonely to be in a research study. I think it's fantastic that your site is looking at ways to support participants, especially early on, as these screening periods can be quite lengthy. It's a time of a lot of uncertainty. You don't know if you're going to qualify for the study. Those can be really important times to offer support for people who are considering research. Thank you so much for sharing how your group does this community outreach and how you start with talking about what happened with Tuskegee and how we do research now. I can share that we had an advisory board meeting where the scientists did not address Tuskegee up front. When we started talking about sharing tissue, those questions came up. People started to ask, "Well, did you ask people if you could share their tissue?" I think the lesson for me from that conversation is that you have to start with that as a foundation. We have to talk about how we do research now, and we have to acknowledge the mistakes that were made and the atrocities of the past in order to build a trusting relationship.

Turner: That's true because it is going to come up eventually, so you may as well just hit the nail right on the head.

Chin: To someone out in the community that's considering participating in research, what would you say to them?

Turner: Yes, I just wanted to make sure that people understand there are people out here to help. As a Christian, I know God is the ultimate. He also gives other people gifts that they can use to help us on Earth, and that has kind of been the reason why—another reason why—I took this journey. I don't know everything, and I know there are people out here in the medical field that know quite a bit more than I do. (Laughs) I think it would behoove anyone that even has any kind of questions or any kind of concerns to just think about not only just yourself, but even your family. If you take care of yourself, that helps your family out as well. Don't make this a selfish decision—think about others.

Chin: Well, Ms. Carol Turner, thank you for being on this podcast and sharing your story. More than that, thank you for your participation in a very important study. I have no affiliation with the AHEAD study—although I do hope to have Dr. Reisa Sperling on the show. If she's listening, an invitation is coming out to her. Ms. Carol, you have taken research, you’ve really embodied what we hope for the community. You've really enjoyed the experience, but now you're going out and engaging with others. Thank you for the work that you're doing. It's going to make a huge difference not only for the communities that you're engaging with but for all of research. Thank you for what you're doing. And Sarah, thank you for all of your advocacy in getting the voices of our participants to researchers, to other communities, and certainly to the public.

Walter: Thank you, Nate.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app – it helps other people find our show and lets us know how we are doing. If you enjoy our show and want to support our work, consider making a gift to the Dementia Matters Fund through the UW Initiative To End Alzheimer’s. All donations go towards outreach and production. Donate at the link in the description. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin–Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes on Aging for Alzheimer's Disease Research Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Alexia Spevacek Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at Chin: @medicine.wisc.edu. Thanks for listening.