Allan: Tens of millions of families with Alzheimer's disease and dementia all over the world, including our family. We are Alz In The Fam. I'm Allan Fair.
Poli: And I'm Poli Fair Noyes. We're siblings, we’re parents, but we're also caregivers.
Allan: This is our podcast. This is our support group. Welcome to our family. Alzheimer's sucks, but this family lives, laughs and learns as we fight for a cure. Welcome. Hey, Poli.
Poli: Hey Allan.
Allan: So this is exciting because this is our first episode that is a two part episode. So, this is part two and, with our very special guests from our previous episode. Why don’t you tell everyone more about it? Poli: So welcome to Episode 10. On this episode, we have Brigid Reynolds again from the Memory Disorders Program at Georgetown University. So, we first met Brigid, you’ll recall when she evaluated our mom at the Memory Disorders Clinic, where she specializes in evaluating and treating memory programs. But Brigid is also a research investigator conducting clinical trials of potential new treatments for Alzheimer's disease. And in this episode, it's all about our experience having our mom participate in a research study. And here Brigid tells us the many benefits of participating in research and about some current research studies and even ones that you can do right from the comfort of your own home. She told us about some breakthroughs in the Alzheimer's research, and we're really excited about it. So stay tuned. Listen.
Allan: Yeah. Here's our interview with Brigid.
Poli: Welcome back, Brigid. We're so glad you agreed to talk with us. Today we're going to focus on talking about the study my mom was involved in. So, I'll just as a small preamble, I'll say, when your loved one first gets a diagnosis of Alzheimer's dementia, likely Alzheimer's, it's kind of devastating. You're like, you might have seen the symptoms before, but it is devastating because there is no cure. No one's ever survived Alzheimer's and gotten better, but I think studies…We were so lucky, because I never would have thought about a study until Brigid mentioned, “Well, there are studies she could get involved in”. And that was not necessarily hope, because we know I mean these are early studies, but it was a way to fight. It felt like to me, we really want to keep fighting Alzheimer's. Brigid, Thank you for that. And do you always recommend to people to join a study, or is there something special about our family?
Brigid: I will recommend that people join research. I will. We, all of us at our program will be discussing research with anyone who's a possible research candidate. So, and at the time, most of the research studies are testing for people with either mild cognitive impairment or mild to moderate Alzheimer's disease back in 2014. So, your mom coming in with the score on the mini mental state exam that would qualify her for studies and definitely going to want to talk to her and the family about that? Yes.
Boni: So I want to kind of go back a little bit and say, you know, you mentioned in the last bit of our conversation prior that coming in early and getting involved early is also very helpful to both the patient themselves and then also to the research and the advancement of treatment for Alzheimer's. So, you know, I know we're going to talk about my mom's study and then about what we could do if we know that there's there's Alzheimer's or dementia in our genetic backgrounds.
Poli: So, Brigid, you recommended, well you told us about a couple of studies, and we chose one that I believe was a study drug, research study, that was hoping it was for was Solanezumab, or I don't even know how to pronounce it correctly. But it was going to try and target the amyloid plaque that is, tends to build up in the brains of Alzheimer's patients. So, let's see, I mean, I didn't know much about amyloid. Is that, are those kinds of studies still going on? The ones that target the amyloid? Brigid: Yes, they're still going on. So, you know, the two primary proteins involved in Alzheimer's disease are amyloid and tau. An amyloid is the biomarker, or the protein that rises first. Amyloid begins to build 10 to 20 years before the onset of memory loss before the beginning of cognitive symptoms. Tau, studies are now, anti-tau studies are now underway as well. That wasn't the case when, back in 2015 when your mom was in the Solanezumab trial. But we're still believing that amyloid is a good target, not necessarily the only target. And so, thankfully, we’re targeting other things as well. The inflammation. Now, Tau. But anti-amyloid treatments, both immunotherapy and otherwise, are still going on. And in fact, Solanezumab is still being tested in an earlier population now, in the in what's called the A4 study. So Solanezumab itself, that monoclonal antibodies, is still under research in large prevention trial.
Poli: Ok, well, maybe…
Allan: And it has the, based on the studies that have been done on it already, has the level of enthusiasm decreased a little bit? That is the marker it seems that, you read a lot about these studies not showing the type of results that were being hoped for. And maybe based on if once the amyloid could be seen, it's too late. So how do you identify a patient who might be a candidate when they don't have the amyloid built up yet and and the difficulty around that? Can you talk about where, like the journey that these studies have been on and where it's at now?
Brigid: Sure, and that's a really good question. Actually, Solanezumab is a good example to use because when it was first studied, it was studied in people with mild and moderate dementia, and that trial was negative. But then, when they took the subset out of the milder people, it seemed like it may have been more positive. That was, it could have trended towards if you could throw out the moderate people, then maybe the mild people would be okay. And then Solanezumab had to do a whole another step and this is the one that your mom was in, I believe… the years going together. But and they took just mild people and MCI and tested them with Solanezumab, and that was again negative. In the meantime, now the prevention trial is underway. So, it's not that and this takes you kind of through the idea of anti-amyloid, although there has been a lot of debate in the research community with all of the negative trials. But the main thing that I believe in research that's going on now is supporting this belief that it's because we're intervening too late. That if you use these anti-amyloid compounds when the amyloid has been there for 20 plus years already then the cascade of damage has gone on too much. So that if instead we intervene at an earlier time when there's elevated amyloid but no memory loss symptoms, then that's when these medications are more likely to be effective.
Poli: So how would we know in someone say my age? I'm in my mid-fifties. How would you know if I had amyloid in my brain if I'm showing no outward symptoms of it, I mean, if it was starting to build up?
Brigid: You wouldn't Poli, but now that’s also changing too. So, I don't know, one of the things that we're trying to do, I don't know if you've heard of the APT Web study. So that…
Poli: We’re in it.
Boni: Yeah, all three of us. Four of us. I think.
Poli: Allan’s not because he's not 50.
Boni: Oh, baby.
Poli: Sorry, Brigid, for interrupting. Go ahead.
Brigid: I tell everybody I know to join in, but so we're trying to, that study is trying to pilot tests. We have. I think it's 200,000 people that that we want ultimately in that study. And so, you do online testing. And they're trying to see if that tests that given can pick up hints of people who are trending in that way. They would then be referred to a clinical trial site, and they could have then, they would have an amyloid, there’s ways that we can measure amyloid. The biggest way, well, either through a spinal tap or through an amyloid PET scan. And hopefully soon on the horizon, a blood test that will make things a lot simpler. So, you wouldn't know about the elevated amyloid and we're trying to fine tune testing that we can give to people that we’ll use as a better indicator. And ultimately, we hope to have a blood test that would be used, and I don't know if you all are aware, but one of the monoclonal antibodies has been submitted for FDA approval. That's Aducanumab. So, we may have our first. By Biogen is the sponsor of that study. We may have our first anti, our first disease modifying treatment available when the FDA is going to make that decision. But if that gets approved, it's going to be approved for people with mild cognitive impairment or mild Alzheimer's disease. And every one of those people is going to have to have an amyloid scan, so I don't know what we're going to do, you know, community-wise when that happens. Because, of course, the cost of all of this testing with the number of people that are going to want this treatment in addition to the people, like your mom, who progressed to moderate stage who would not be eligible for the treatment.
Allan: Yeah, that's that's really interesting to listen to that because I hear this conversation and it makes me very interested in this molecule. So, if there is, so if Biogen puts this therapy out on the market, even though I'm a, even though I'm a man in my mid-forties, that isn't showing it, I'd be very interested because as far as I'm concerned, I'm genetically predisposed to it. So, if there's something that can, that might do something to cut off this amyloid and tau development off at the pass, I'm going to want to try and try and get it. And I know that, you know, the FDA, there are very strict things that it's indicated for. But what do you think the journey would be for someone who's in my patient profile to obtain that as things stand now?
Brigid: Well, there would be, it would be out of the question. That may be the bad news, but the good news is that the prevention trial that is starting up now is called the AHEAD Study and it's A345. And so, what they're doing with this is getting into for the first time, primary preventions. So secondary prevention in medicine would be treating amyloid when it's already there. So even with the prevention trials right now to get in, you have to have elevated amyloid. In this new trial, they're taking that, dropping it down a step, and they're taking it not with people with elevated amyloid, but people with intermediate amyloid and giving and seeing if they can prevent that amyloid from rising to the point where we call it elevated by dosing these people even earlier, and people like you Allan, with the family history will be invite to screen for that trial at a younger age. When we, because we know that we're going to be moving back to people that you know, what you do is you take the onset of your parents memory loss symptoms and take 20 years away and that's when you could try to get an estimate of the childrens’ risk. So, you would see their amyloid also rising about 20 years earlier than the onset of their parent’s memory loss. And so, we're going in research down in age and earlier in entering into the primary prevention realm. Whereas when I started 20 years ago at Georgetown, none of this was happening. So it kind of dove tales in to both of your questions on this journey. Is it amyloid, is it not? Well I say, even though we don't have a disease modifying treatment yet, it's really the advances in research when you look at the past 20 years, compared to the 100 years before that, when, you know, Alzheimer first identified the tangles and plaques in a young woman, actually in her in her forties. There was no progress up until the 1970s. And now, you know, just since 2020. I mean, since like 1990, since I started at Georgetown 20 years ago, there's been a lot has been a lot of progress, and I'm very excited.
Poli: So, when my mom did her study, one of the first things, the first part of it was she had a PET scan. And, I felt like we were pretty lucky to have that because I recall doing some research because I wanted to know, I wanted to make sure that what was wrong with my mom wasn't something different, something less horrible. And you said the only way to diagnose Alzheimer's at the time 100% was basically an autopsy or this very expensive PET scan. So, my mom got one as part of her study, and I think in that study, you had to have a positive PET scan, or positive meaning it showed amyloid buildup. Is that what it was? Before you could be in the study?
Brigid: Right, because it's an anti-amyloid treatment, and I wouldn't want to be giving it to people who don't have elevated amyloid.
Brigid: And the PET scan or any biomarker to measure amyloid is not diagnostic. So you, your mom, you know, you could have had, she could have had a positive PET scan. Someone could have a positive amyloid PET scan and still not have Alzheimer's disease. But, when you take all the pieces together, you know when you're looking at whether or not someone's a candidate for either an approved drug or research drug, our ability to measure amyloid through a PET scan is also something that's new since the 20 years.
Brigid: And and you probably recall, you're not given a full report. It's just positive or negative.
Brigid: But for a lot of people that's still a motivation to enter into a trial. We want to know and when that blood test comes around, it's going to be really great.
Poli: It's going to be a game changer.
Poli: And I remember, it was very important to be at the time, although I don't know why, as part of your study or even in clinic, do you guys test the genetic, the marker, the APOE? Do you test that of your patients in clinic or is that only if they're in a study?
Brigid: People with Lipoprotein E - four being the… It comes in three forms 2, 3 and 4, and four is the form that's more associated with higher risk Alzheimer's disease. You get one from each parent, so two copies of four or would be the greatest risk. Clinically, we do not. Typically, it's not covered by insurance. So, we do genetic testing. Occasionally we do, because it can be helpful if you're trying to differentiate between which kind of dementia. And someone that had two copies of four would might push you more in a direction of Alzheimer's disease because they carry that risk. But in research, people may respond differently to treatments based on their APOE four genotype. And so, we need to know that. Poli: Yeah.
Brigid: It is always a part of research usually not disclosed, because we don't, I don't think in your mom's case we would have disclosed that, but sometimes it is. So for example, the Aducanumab, the one that's a monoclonal antibody that Biogen has applied for FDA approval for people. If you have APOE four, you could be a greater risk for some of the potential side effects. So, it's dosed differently and titrated at a different rate. So, we know in APOE genotype could influence how people respond to different treatments and it’s a risk and the genetic marker that we know the most about.
Poli: So just spoiler alert, Boni and I went and found out what our genotypes were for that. So, we actually, I may ask you to do this in my mom's next study. To test hers. We’ll pay for it because I know we can't reveal what was in the study. That’s owned by the study, not by you or me. But anyway, just interesting. So, I want to talk about the study because we had such a phenomenal experience being in a study. Aside from whether the study drug, you know, had a positive outcome or not, we came; my mom was in an infusion study and she came in. We brought her in once a month for an infusion and I would just say that being exposed to you and the other researchers who were helping once a month was just the best thing that came out of her having this horrible disease, in that we could ask questions, we were, she had medical, not care, but evaluations all the time on a regular level. And getting an appointment with the neurology provider is hard enough. Getting seen on a regular basis is har enough. I mean, I've talked to friends who are like, “You're seeing Brigid Reynolds or someone else once a month?”, and I was like, “Oh, yeah”. I didn't even realize everyone doesn't get to do that. By the way, the nicest people work on the research studies. The best, most wonderful nurses, doctors, people. I don't know why that is. Maybe it's just that they are, you know, kind people to begin with, but anyway. What do you see as the benefits of a person being involved in a research study outside of, you know, we just get to interact with you guys so often?
Brigid: Yeah, I would say, really, that is one of the things that I would like to, that I use when talking about people that are thinking about participating in a research is you really do become part of a family. It feels like a family. And even if the drug doesn't work like you said, you’re part of a process and it’s that hope. I mean all of the hope, really for the future of treatment of Alzheimer's disease lies within research. There’s no way to make progress without people like your mom and you participating in studies like these. So, it's you become actively engaged in a process that's as much for the family as it is for the patient. And I think you guys can attest to that because.
Brigid: Your mom would have a very different, I mean very different, I think, take on coming and all that you went through to keep her in the game. And and even the fact that she was in an infusion study when she doesn't like needles. So, you know. So, the hope that being part of a family and the engagement and then, lastly, the potential for early access to a new treatment.
Poli: Right. So I'll point out here that I recall my mom, I think the study was 18 months of infusions, and then the study she was in, they did something. I don't know if it was called an extension or something, where even though we had no idea at the time whether she had been getting the placebo or the drug, once her study ended, she could still come back in and get the actual drug. It was was it called an extension? Is that it, Brigid?
Brigid: It’s called an extension, mhm. An extension study.
Poli: And so, tell us about that. What is that? How did those work? I mean, I remember it was great. So, you it's getting maybe the drug? I don't know.
Brigid: You’re definitely getting the drugs. So, if you take 18 months and I don't remember in the study if there was a one-third or one-half chance of placebo, do you remember that?
Poli: I don't know.
Brigid: Let's say it was one, many of our studies are typically, it's either one-third or one-half and more often one-half. So, for 18 months your mom’s in the study, and let's say she was in the placebo group. At the end of that 18 months, you know, it's a big motivator for people if they know that they will be offered, they have to get through the double blind portion, but then they would be offered a chance to continue on without chance of placebo. And so, it’s what, often it's determined before the study starts. Yes, we're planning to do an extension study where everybody will have a chance to be on active treatment without chance of placebo. And it's a big motivator for people. I mean if you have 18 months to a two-year study where you could have been going in once a month and getting placebo the whole time. If you didn't think there was any other, that there could be a chance that your mom would never get any treatment, then that wouldn't be, it just wouldn't feel as good to a lot of people. So that's why. And that also gives the scientific and the investigators a chance to see more information about how and what we're ultimately going to know, if the drug is approved how it lasts after 18 months. And the reason, and so if in the studies enroll over, I think Solanezumab enrolled over a year period at least, more like two years. So, some people are going to be out of the study and then into the extension study while some people are just beginning. So, it's just a way to get more information and to give people a chance to get the actual research drug.
Poli: Yeah, I was pleased to realize that at the end of the study, she was going to be getting the actual research drug. I hadn't realized that before. And we'd already seen such a benefit to being exposed to you; all the research, all the other people working with you each month being part of the family, as you say. So, I think, I had no idea that research drugs did that, then gave you the drug. And we were in a study where the drug had shown some promise in previous versions, or I think. Yeah. So, I'm just gonna ask you a little bit about informed consent about the drugs with Alzheimer's patients. Is that difficult? I mean, I remember that I needed to agree for my mom to have the study, as her primary caregiver or the person who was signing papers for her. Is that hard to do with Alzheimer's patients? I remember my mom, of course, didn't want to have an infusion, didn't remember why. But she did agree each time. And you guys asked her each time.
Brigid: Yeah, it is, as we've moved earlier and earlier, you know, people’s ability to make those decisions is higher. At the time that your mom, well, she was really, I mean, it was, you know, it was in the case of mild dementia or mild Alzheimer's disease, I would say it's not harder. They have to have their family there. But as it progresses, then eventually, sometimes even in 18 months, studies where someone enters in mild, they've progressed to moderate and don't have the ability to make decisions at the time they're rolling into the extension study, and that's why we have family. It's a legally authorized representative to sign for them at the point that we don't feel like they have the ability to understand, really. It's understanding what they're consenting to.
Poli: Yeah, well, I also want to just give a plug for studies. We were incredibly well informed. I got tons of written and oral information about the study she was involved in. But also, we got lunch every time we came, for all of us. That was provided in the study. Free parking, which in Georgetown is tough. And for us, as a family, we made it fun because we would, we didn't eat the lunch at Georgetown, as lovely as it was. We went, we took my mom out to lunch afterwards, and it was always like a, it was just a nice way to spend the day with her. We even had her grandkids come once in a while, but then found that they were a little too boisterous to sit still. Because in an infusion study, you know, we had to set her up on the infusion, or you did. And then, I mean, I think it took 45 minutes for the drug to slowly drip in. Anyway, just all good experience all around.
Boni: Yeah and I’m going to go back again and say, you know, we started her on that study relatively soon after we and started seeing you, Brigid, and the ability for us to be with you and your staff, and for you to get to know our mother so personally has been such a benefit to her care overall. And it would have been so much more clinical, as opposed to just so much so, there's the social pieces and the ability to impart knowledge specifically about our mother based on her personality. And her decline was incredible.
Poli: So, we became study junkies after this.
Brigid: Yeah and I don’t know if you all wanted to talk about this, about the study that you joined?
Poli: Yeah, we are. I mean, I am going to bring that up. So, thanks to Brigid we joined the APT Study, which is the Alzheimer's Prevention Trial, which is all online and we just log in every three or four months and take a series of online sort of brain game tests and that just tracks our progress over time. We get a dashboard on that where we can see how we're progressing over time. And the tests are hard, I will just say that. I guess I won't go into it like some people that have been in the media a lot recently.
Brigid: I have a question. Would you say they're intimidating?
Poli: No, not at all. They're really easy. It's just for me personally, it's scary because I I worry all the time that I might be losing my memory and and progress in the same way that my mom has. And I'm 20 years, you know, I'm in that range where 20 years from now would be the age when my mom started showing some symptoms. So, but no, they're not intimidating. It's actually really fun now that we've been doing it for almost a year, to be able to track my own progress and see that I'm not declining, thank you. Or if I saw something where there was an issue, I might call you Brigid and say, ‘Hey, I want you to evaluate me’, or I might, you know, reach out to my primary care doctor or something. But I think it's really an important study. And then, all of us signed up for a study that was comparing men to women with Alzheimer's. And that study was at, up in New York. So, we got a chance to visit with Allan. And the results of that study are just now coming out. Brigid, you found it and sent me a copy of it. Thank you. And we are going to report on that at a later visit.
Brigid: I’m glad.
Poli: On a later podcast, but yeah. And again, we did a lot of the same tests that you did with our mom and met some lovely people at a different research hospital. And just again, a wonderful experience. I would encourage anyone listening to this podcast to get involved. It is empowering, in a sense. It gives you a little bit of hope. And you have access to the best information and really the top researchers, the best people working on solving Alzheimer's.
Allan: And maybe we can talk about how the average person or family would start. I think we're very fortunate in terms of where we're geographically located in the D.C and New York area, and have access to be able to physically go to some of these places where some of the most groundbreaking research is occurring. But for someone listening in a rural part of the country, that seeing, “Oh, I'm recognizing these symptoms in one of my loved ones”. How did they get started on that journey? What's a great resource in which to begin?
Brigid: Yeah, no, that's a good question. And I think to point out that the vast geographical differences mean some people have very minimal access. Hopefully with more telemedicine that we're doing, that will change some. But for people over the age of 50 right now, a really good way to get in is by joining the APT Webstudy. There are also registries. One goes down to 18 at a San Francisco, the BrainHealthRegistry.org. And the registries and the investigators are sort of working together on these things. So, I think the, arguably the best way is by joining a registry, and I can give you a list of three of them that are ongoing. The APT Webstudy again doing a step again, a bit beyond that and directly referring, although the other registries air doing that too, referring people to clinical trials sites. And then now of course with the Ahead Study; so that's beginning into the process of primary prevention and dropping the age to 55 for screening. It’s for people who have a relative, or it's a relative or a known genetic marker.
Boni: Or both.
Brigid: You know, it would open that up. And so again, you know, just I guess following, I think the Alzheimer's Association will have some information about trials. And a program called Trial Match, which you can sign up for and it will tell you a trial that you may be eligible to screen for. I'm really putting a lot of hope in the Ahead Study and very excited about that and how it's opening it up to. You know, when you think about a heart attack and cholesterol, we don't wait until someone has a heart attack to treat them for having high cholesterol. Why do we? You know, we have to do the same thing and have that same plan with Alzheimer's disease. And the study, at least the paper that I read about this study that, the report from the study you participated in New York, has given some very valuable information helping us learn. It's like, when does amyloid start to develop and who's at highest risk? And there's going to be a lot more discussion about that study too. I mean it made me for one think, you know, “Hey, you know, so you know if”, well, anyway…
Allan: I have a question that might go beyond your area of expertise. But one, I'm really excited to hear your excitement about where these studies are going and what it could mean. If we leap ahead to when some of these therapies are FDA approved and, on the market, I would imagine access is going to be a huge challenge. You even said before, so many people are going to want this and just as there so much great innovation happening in the clinical studies, is there any disruptive innovation occurring that could change the way in which we get access to therapies in the future that you're aware of, that are exciting for you? It seems like it's going to be a big issue when we get to that stage of this.
Brigid: Yeah, I think it's going to be an issue. And through the study is gearing up for it. I wanted to speak just about two things in addition is also to highlight the importance of more minority participation in research. So, we have the geographical concerns that some people are far away from a research site. And maybe we can, with telemedicine, do a little bit better job on that. We also have to get more minority participation because we don't want a situation where any new approved drug, we understand how it works in white people because white people were the only ones that participated. We need to know about how these drugs work in all people. So, we have to do a better job of reaching out to minority communities and getting people signed up for these research studies.
Boni: Yeah and Brigid, I remember going to the initial luncheon at Georgetown, and one of the slides that really shocked us, or me, was the fact that some of these minorities have a much, much higher incidence of Alzheimer’s just by virtue. And Hispanic, which my mother is, of course Puerto Rican, is one of them, that where the incidents in compared to Caucasians was so much higher. Can you speak to that as a level of importance, along with the treatment variants that might be indicated by race?
Brigid: Right, right, so we're learning more about that as well. And that's why, again, another reason why we need more participation because that is making those differences. One of the things we know is that, you know, cardiovascular disease is more common in minorities, and cardiovascular disease is a risk factor for so many things, including Alzheimer's disease. But in order to understand more, we need more participation so that we can look, you know, are there specific genetic differences that put these people at risk? So we just need to keep at it and understand better because, yes, we do know that there's higher risk in both Hispanic and African American population, higher incidents, higher risk and lower research participation.
Boni: You know it's so frustrating just to bring it back to my mother in general, in that when you look at all of the risk factors, she's so low on them and yet still has it. So, you know, no cardiovascular issues. Her diet was really good. She's very active and very social. All those things, and so you know, it does go back to - we need the study to see if there's a genetic marker, as opposed to that, you know, lifestyle markers might exacerbate. But that can't just be it.
Brigid: Exactly, yeah.
Allan: Do we have any data as to why there's such low participation in minority communities? Do we know? Is there a lack of trust? Is there a belief that it is too expensive? Is there just not a top of the funnel awareness of the existence of these things even as options? Do we have any insights as to why?
Brigid: Yeah, it's all of the things that you mentioned and also, for example, like research sites like ours, we don't have. We would need. The tests are available in Spanish, but we don't have investigators that speak Spanish. And before we got on a hiring freeze due to the pandemic, our goal was we were going to have our next research coordinator be Spanish speaking. So that's, you know, one of the barriers for some of the sites as well. But you know, D.C. has a very large African American population, but we're not doing very well in that either. Sometimes, the NIH will start to mandate, and I believe in Solanezumab, in many of the trial, it is like everyone in five people needs to be a minority participant or the site can't continue on screening. We need more of that and we need to do more outreach. Yeah, it’s as much as this has been talked about again over for 20 years, we're not making as much progress as we should.
Poli: We're working on it.
Allan: Yeah, that's really interesting. I'm glad to know that and glad that we have a platform where maybe we can help drive some of that awareness ourselves. So that's been a really insightful conversation. I don't know if we have more questions prepared, but I certainly find myself feeling like we've enjoyed and have been privileged to have a lot of your time Brigid. So maybe we should start thinking about wrapping up guys.
Trissi: Yeah, I just had one question Brigid. One of the benefits of working with you was also learning about drugs that are already on the market that could potentially help my mother. One of them that we ended up getting a prescription for her, for our mother, was Namenda. And we saw, we believe a tremendous benefit from that. We're assuming it was because of that drug. Our mother had developed some incontinence issues, and after going on that drug, they completely went away.
Poli: They mostly went away. During the day they went away.
Trissi: Yeah, right. But it was a huge problem during the day. And I've been telling all of my friends with loved ones with Alzheimer's about that drug, and many people don't seem to know about it. So, is there anything else that's out there where you have seen very promising results other than Namenda? And is it typical what we saw with our mother after going on that drug? Because she was well into the moderate phase of Alzheimer's when she started that.
Brigid: No, that's a really good question, Trissi. Thanks for asking it. So, Memantine was the last drug to be approved for Alzheimer's disease. And that was in 2003. And before that, the Cholinesterase inhibitors; Aricept, Razadyne and Exelon. So Memantine actually was approved for use in moderate to severe Alzheimer's disease. So, it's indication to start it is when memory lost is at the moderate stage with the Mini Mental State Exams score of I believed in the study, it was 15 to 5. So, your mom started, I think her Mini Mental State Exams score was about 17. Like the Cholinesterase inhibitors, Memantine is not disease modifying, but provides symptomatic benefit so it doesn't ultimately, because it doesn't target the underlying pathology directly, it won't halt or slow, but it will help with the symptoms. And so, I always like to hear when people really notice that a symptomatic medication like Memantine, they feel that it's helping. I would say most people would tell me that they can't tell whether or not it's helping. And then there's some people, probably about the same small percentage, that will say, “I know it's not helping”, as would say, “Hey, this drug really made a difference”. Memantine may help some with behaviors as well, so as we've learned a little bit more overtime about Memantine, it may help with some of the behavioral symptoms. But there's nothing else that's been added to our repertoire of symptomatic treatment since Memantine in 2003.
Trissi: Thank you.
Brigid: And I'll tell you things that are advertised, you know, like supplements. And, you know, we basically discourage that because there is no, if you're an evidence based program and there's no evidence for these things, then you kind of worry about spending a lot of money or who's getting all that money for a treatment that hasn't been proven efficacious.
Trissi: Right. They haven't been through the clinical studies that you conduct on a daily basis. So, I tell my friends that too, you know. There's just no good reason to put someone on a supplement. It's basically a supplement. It's not a drug, and they're not studied.
Allan: Well, Brigid, thank you so much for your time. Is there anything that we didn't cover with you that maybe you had prepared to talk about or wanted to mention before we wrap up?
Brigid: No, I just want to thank all of you for doing this. I think this is a wonderful thing. And I think that families are perhaps more likely to initially listen to other families that have gone through it. And I think that it's just remarkable, again, the way that you supported your mom through this process. And I think this kind of outreach that you're doing is a great thing. So thank you and for your participation, all of you, in the research effort. Because that's the way we're going to fix this. And we are.
Poli: Great, yep.
Trissi: Thank you Brigid so much for being here with us.
Allan: We're really glad to be in this community despite the fact that a horrible disease is what makes us a part of this community. We've met really wonderful people. So, thanks for welcoming us into your family and thanks for being a part of ours. Brigid: All right. Thank you.
Poli, Trissi & Boni: Thanks Brigid.
Allan: Thanks Brigid. Bye.
Thanks for listening to Alz In The Fam. In the fight against Alzheimer's and dementia, we are all family. Find us at Alz In The Fam on Instagram, Twitter, Facebook, YouTube and on our website alzinthefampodcast.com. We appreciate you clicking that subscribe button on Apple, Google, Spotify or whatever your favorite podcast catcher may be. Alzheimer's sucks, but we're in it together. We are Alz In The Family. Talk soon.