How to Participate in Dementia Research (and Why It Matters More Than You Think)

Transcript of Interview: “How to Participate in Dementia Research”

Mike Barnes: [00:00:00] I think a lot of us who are affected by Alzheimer’s dementia, we wish so badly we could do something to help find a cure, and there are possibilities out there.

Kim Barnes: Absolutely. Today we have Courtney Kloske from the Alzheimer’s Association with us to talk about ways that you can get involved in Dementia research. And Courtney, I feel like maybe it’s just me, but that there are a lot of misconceptions. when I think of a clinical trial, I think of just what I’ve maybe seen on television shows. And so I don’t really necessarily know exactly what it means to be part of a clinical trial or even just with research studies that involve, dementia. So let’s start there.

Courtney Kloske, PhD: Awesome. Well, thank you both for having me today. I am really excited to talk about ways to participate in research and like you mentioned, many people when they hear the term clinical trial or participation in research, they just think. Drug trials. They think about treatment trials, looking at new medications, new treatments, but there are other opportunities and other ways to participate in research. There’s other types of studies like [00:01:00] diagnostic studies, maybe we’re trying to identify new tests or procedures to better detect dementia, Alzheimer’s disease, or other forms of dementia. Also we could think about prevention trials. So thinking even earlier, how can we prevent the disease? Thinking about quality of life studies, what research is going on in that space? And there’s things as simple as just an online survey you can just fill out, fill out research on there. And that would count as participation in research, really participating in those clinical trial opportunities.

Mike Barnes: Is it a case of I decide what I want to do, or you decide what I should do?

Courtney Kloske, PhD: It is fully on you to decide what ways that you wanna participate in research, and a great way to see what opportunities are around you is to go onto Trial match. It’s on az.org/trial match and trial match is a free service that you can go on to look at research opportunities. Happening near you that maybe you want to participate in. You [00:02:00] can get a curated list of research opportunities and say, okay, this one looks like a maybe of interest. And you can go in, fill out some information, and then contact that study, site to see are you a fit? Is this something that’s right for you? Or maybe is there a different opportunity that you’d rather participate in?

Kim Barnes: So it sounds like there’s really a large number of very different kinds of studies that you can get as participate as much or as be as involved as potentially a drug trial where they’re trying different medications and or and it sounds like too, that it’s people who have no issues currently or are diagnosed with dementia or a caregiver. So let’s talk about just like all the different types of people who might be a good candidate.

Courtney Kloske, PhD: Yeah, that’s a, good, question and a good thing to think about. So we really need everyone to participate in research, whether that is somebody living with. Mild cognitive impairment or those small memory changes, [00:03:00] whether that’s somebody that is in, later stages of dementia, as we’re thinking about those quality of life studies or even some of the symptomatic medications that are available. Or thinking about healthy volunteers. If there’s a drug trial, there’s often an arm of that study that’s looking at using that medication on healthy volunteers to make sure it’s safe and effective, or we need them as like a comparison when we’re thinking about maybe an observational study when we think about observing people over time, looking at somebody’s disease course, if they’re living with dementia, or somebody that is cognitively unimpaired. So really need everyone to participate.

Mike Barnes: Do you have to live in a proverbial big city to be involved? Or can someone who lives out in the, country, away from town be involved as well? Does it matter where you live?

Courtney Kloske, PhD: So it’ll matter a little. Some studies won’t be available to you if you live out in the rural areas. However, there are going to still be potential opportunities for you and that’s why I really [00:04:00] recommend everyone go check out trial match. ’cause you can put in your address or your zip code and see what opportunities are near you. Maybe you don’t wanna drive more than 30 minutes to go to a site, but maybe somebody will drive an hour or two. And then you can really add in that, location and see what opportunities are near you. And maybe you only have to go to the clinic once every couple years. Then you could decide, is this the right fit for me, or do I wanna do maybe that online survey or. There are other ones that maybe you send in, you, collect like saliva and ship it off, and so it’s just mailing service type of trial. So there’s a lot of ways to participate in research. It’s not going to your doctor’s office or going into a big clinic.

Kim Barnes: That’s kind of, I think a little bit mind blowing because you just don’t think, well, I didn’t know all this stuff was happening, but obviously there’s a lot of research going on and you just don’t think about all the pieces that have to come together to be able to make that research possible. [00:05:00] What about, are there any studies or research done for the caregiver?

Courtney Kloske, PhD: Absolutely. There are definitely those studies and we definitely need to study and better understand what a caregiver goes through during the disease, journey as they take care of their loved one. And there are those studies. Some of those may be those surveys of. How is your life going? What are you doing to help yourself? Whereas there may be other ones where we’re also measuring biomarkers and other changes in, the caregiver. there are definitely opportunities for caregivers as well.

Mike Barnes: I don’t know if people really understand how much this can help. Even if you just volunteer for one small little trial, it could help make amazing, crossroads into finding a cure or finding some way to help people who have dementia correct.

Courtney Kloske, PhD: Absolutely right now we actually just published a paper from the trial match team, and we found that over 600,000 participants are needed to participate [00:06:00] in all of the research studies that are ongoing for dementia related trials. So your involvement really can make a significant difference in advancing our understanding of dementia, how we diagnose it, how we treat it, and how we prevent it as well.

Kim Barnes: That’s a lot of people. So give us an idea of just how many different studies are going on at any given time. Thousands, I would assume.

Courtney Kloske, PhD: yeah, so that number fluctuates. And you can go, there on trial match. Right now we have over a thousand various study opportunities, but that number may go up and down depending on when a study is recruiting, when it’s not recruiting, when it’s finished. there’s a lot of different criteria for seeing the trials that are being pulled into trial match but there are a lot.

Kim Barnes: Yeah. Gosh, that is a lot. Now one of the things that I’d be curious about is obviously helping to find a cure and be participating is, a great way to be able to help push along the research, [00:07:00] what are the benefits to the individual who’s participating? Whether it’s somebody who has dementia and or a caregiver, because I would assume that on some of the clinical trials, especially if it’s a drug trial, they’re going to be, followed by a doctor. Those kinds of things. What are the, benefits beyond just helping to solve, try to, find the cure.

Courtney Kloske, PhD: So you mentioned one of the big ones helping to progress the field, but you will also get more depending on the study, more information about your own health. So some of the studies will, if you’ve done a brain scan, some of those studies will tell you the results. Other ones may tell you the results about a blood test or cerebral spinal fluid or other measures or genetics. They may do those testing and may actually give you back the results, and that’s a conversation to have at the onset of any study you may participate in is, are the research results going to [00:08:00] come back to me? And if that’s of interest to you, that’s a way to get some of those tests, in a research environment and have that clinician really talk you through what it means, in a way that may be outside of your normal clinical care.

Kim Barnes: Oh, interesting. Okay. Are there any other questions that people should ask when they find one that they think they’d like to participate in, are there other questions they should be asking?

Courtney Kloske, PhD: Absolutely, and we do have some of those on our website, but some of them would be, what’s the time commitment? How often will I need to either come into the clinic, be on a phone call, do a survey? How often will it, impact my life? Will I get any results back? When the study finishes, will I hear about those results, and really just, understanding what the clinic will be providing you after the research study is done. Some of them won’t be able to give you results until the whole thing is completed, just [00:09:00] given the nature of a certain study, but other ones can give it to you more frequently.

Mike Barnes: I just think it’s so great. You can proverbial cherry pick which one you want to be included in so that you can help but help at your pace. And whatever is good for you.

Courtney Kloske, PhD: I will add there that while there may be a study you’re really interested in and really think that you wanna participate in, it may not be the right fit for you. So knowing that there may be something else, a different opportunity that could come about but again, definitely staying on top of looking at trial match to see what opportunities as they, as we get new trials, your results may change.

Kim Barnes: Yeah. And that makes sense because maybe you’re not, they’re looking for something specific Sure. A type, whether it’s gender or something that they’re looking for. Are all of these studies run independently? Are they, how are they all, are at, different organizations, different doctors’ offices, things like that.

Courtney Kloske, PhD: They’re all over. They’re run [00:10:00] by a variety of different groups. Some of them will be, industry run, other ones will be run through an academic health system. there’s a variety of different, leads to the, research opportunities. Okay.

Kim Barnes: Wow. And then the, for the ones that are the true drug trials, those are ones where you potentially are helping to test a drug to see its effectiveness, whether it’s, I guess, progression of the disease or prevention of the disease or those kinds of things. So you would be potentially taking medicine that would be being researched.

Courtney Kloske, PhD: Correct. For example, the lecan and umab medications that are now on the market that do slow disease progression in people with early, early stage Alzheimer’s disease, like mild cognitive impairment or mild dementia. the two therapies that we have that slow disease progression. Went through years and years of clinical trial pipelines to make sure were safe and effective. We understood the risks and we were able to [00:11:00] show from those studies, not we, the clinical trials group, were able to show that they were, effective in slowing disease progression, and that was only possible through the clinical trial mechanism.

Mike Barnes: Wow.

Kim Barnes: So really shows the importance of being able to get new

Mike Barnes: participants.

Kim Barnes: and the importance of being able to get new drugs or new therapies or whatever it is to be able to help people.

Courtney Kloske, PhD: Correct. The clinical trials really are the gold standard for getting drugs onto the market in any disease course, not just in Alzheimer’s. There are clinical op clinical trial opportunities for every disease, but today we’re really obviously talking about dementia research.

Kim Barnes: Is there anything that we’ve missed, any other, things that you think would be helpful for people to encourage them to participate and or, and

Mike Barnes: to know about the opportunities to be able to help?

Courtney Kloske, PhD: Yeah. So I think, really just driving everyone back to, the Alzheimer’s Association trial match platform is really [00:12:00] the place that I would encourage everyone. Like I mentioned, we need everyone to participate in research studies and research opportunities, whether you have. Cognitive impairment, whether, it’s somebody living with dementia, a caregiver care partner, or just somebody that’s interested in participation in dementia research. We need everyone to participate in these opportunities.

Mike Barnes: Well, I love what you’re doing and I’m so happy about the progress that you’re making and including so many people to help hopefully find a cure. Thank you so much, Courtney.

Courtney Kloske, PhD: Thank you for having me.

Mike Barnes: I’m just so excited about this. again, I know it’s never gonna help my mom, but just knowing that it’s gonna help others in the future,

Kim Barnes: right?

Mike Barnes: Because it’s just so tough going through something like this as a family member, or if you have a friend or whoever it is going through, the dementia process isn’t fun. And knowing that there are things out there, like these clinical trials to help find a cure just makes it so, positive.

Mike Barnes: If there’s any other topics you’d like us to discuss, please let us know. Parenting Aging Parents.

*This transcript is auto-generated. Please excuse any typos or mistakes.