A podcast that listens, hears, and offers wisdom & hope from caregivers who have lived the experience.

A Supportive Podcast for those Dealing with a loved one with Memory Loss

Covid-19 & Alzheimer’s & More…

Covid-19 & Alzheimers & More

00:00:01 – 00:05:16

Welcome to fading memories. A podcast with advice wisdom and hope from caregivers who have lived the experience and survived. Tell the tale. Think of us as your caregiver. Best friend as you know. My mom suffered from. Alzheimer’s and cognitive impairment affected my grandmother and great grandmother. It seems to run in my family. But i’ve learned my brain. Health doesn’t have to follow the same fate as those who came before me. I am doing what. I can to improve the health of my brain including eating a better diet and exercising. However i learned recently that when it comes to nutrition most of us are still living with undernourished brains. And i know i need something to fill those nutritional gaps this led me to neuro reserve and their product relevant relevant is a nutritional supplement that restores the vital nutrients for healthy aging brain renovate includes seventeen of the most important nutrients that specifically target long-term brain health. These nutrients come from the mediterranean and mind diets which studies have discovered can reduce our risk of alzheimer’s by over fifty percent. You can use my code f. m. fifteen for fifteen percent off of your order. This code is good for subscriptions which will apply to all future orders as well as individual orders go to neuro reserve dot com to purchase. The link is in the show notes and you can also find it on my website. Neuro reserves mission is to help our brain span match our lifespan. If you’re like me you need as much information as possible to put a plan of action together. That is why. I was honored to have not one but two conversations with scientists and doctors from the alzheimer’s association as a part of the anc twenty twenty one conference. Today’s episode is with heather snyder. She is the vice president of medical and scientific relations at the alzheimer’s association in this role. She oversees association initiatives that accelerate innovative alzheimer’s research and provide opportunities for the global dementia community to connect and to collaborate in this conversation with heather. We discuss the need for more diversity in clinical trials and coveted and how it has affected people with dementia and how they think it might actually accelerate dementia cases with me. Today is dr heather snyder. She is the vice president of medical and scientific relations for the alzheimer’s association. The thank you for joining me today. Heather thanks so much for having me. Your welcomes our first topic. Today were is one. That’s been near endeared everybody’s hearts over the past eighteen months or so is covered nineteen association with long-term cova. Excuse me cognitive dysfunction and the acceleration of alzheimer’s disease. And it. I i i think i’ve like most people are kind of over kovic and a wasn’t interested in this topic as much but then i started thinking about it some more. I must gonna jump into the hard question. I and i’m wondering have we learned anything in the past year which i know in research terms is not very long about the brain and viral infections. I know great clutch shannon and one of the things that we are learning with the virus that causes cove in nineteen is is There’s still a big question as to whether it gets into the brain or when it how. It’s impacting the brand weather. that’s draft. meaning it’s getting into the brain and acting directly on The the prophecies of the brain or whether it’s indirect so that might mean that it’s causing an immune response. It’s actually Impacting the barriers are. What we call the blood brain barrier the barrier that protects our brain which might make and other things that are not good for our brain be able to get into the brain so there’s a lot of emerging evidence that suggests that it’s impacted cove the virus that causes cove in nineteen. Its impact on our brain may actually be more indirect and acting in these ways influencing and or or then maybe impacting our brains than ability for various processes and. We’re seeing that play out in changes in behavior changes in cognition memory overtime. And and how long that lasts. Whether that’s reversible. Those are still questions. We don’t know that that’s some of what’s being researched today. That’s fascinating was that research was the research into viral infections and alzheimer’s ongoing or did it just kind of pop up with the Cova virus there been. I think historically we’ve seen studied here in there that have seen an association of different viruses and At increase redskin later life of alzheimer’s although exact those have been associations and we haven’t really been able to untangle of causing effect so they’ve they’ve been It’s been very unclear and how you do.

00:05:16 – 00:10:01

That has also been a challenge. Because in some instances eighty or ninety percent of all people have these viruses in their brain. And so how do you know that that perhaps one that it’s causing The some of the downstream where the biology changes in alzheimer’s in one person. But not in another or is it that you’re seeing these these viruses in the in the brain’s activated in the brains of people with alzheimer’s because you’re also seeing changes in the immune system and and the the ability of the brain to To stave off them about that activation. So there’s been a lot of questions i’d say. The pandemic and covert nineteen gave us an unwelcome opportunity. That we could start asking some of these questions in a different way and and really try to be answering these questions as soon as possible. I did say mostly because the isolation the lockdowns all of the mitigation effects were things that we did to mitigate the disease last year girly did not help our older population whatsoever. And so i said. Well there’s gonna be a plethora of evidence to sift through in and research going forward which like you said. This wasn’t unwelcome jump into that. But you know now. We have a pile of evidence. We didn’t have before so for better or worse. We’ve we’ve got that Tell me a little bit more about like the blood brain barrier. Do we know like. I’ve i’ve heard of it. I understand it. But i don’t think i understand it very well like i said to my previous Afc guest i’m more artists than scientists. So i’m very fascinated with brain research. But i don’t think i could do it very well but do we. How do we know like what can and cannot get past the blood brain barrier because there’s something that we shall understand maybe to help our brain health. Oh really great questions and so if you think about it i mean it’s a really sophisticated biochemical barrier. You can almost think of it as a wall. That’s protecting our brain from things that might be in our bodies or that might harm our brain And that’s really because our brain is our control center right so it’s controlling our every process and so we need to protect it and keep it as healthy as as it possibly can to do all of those processes but it’s a it’s a biochemical of very sophisticated biochemical barrier that allows only certain things into our brain that helps brain with its processes and its activity and it’s it’s overall functioning But as we age we do see that. There are changes in our blood brain barrier. And and that’s normal aging but in alzheimer’s and other brain diseases we see that accelerated or we see that that the Those changes actually increased in a way. Where things that maybe shouldn’t be getting in our brain or able to get into our brain and exactly how and what questions to ask exactly what’s happening or what that breakdown in. There’s a few teams that are working on that right now and in fact some funding from the alzheimer’s association to a research team at the university of southern california is doing just that and trying to say okay. We know there are changes in the blood brain barrier. Do those changes actually come before after some of the other brain changes in that somebody with alzheimer’s may have and so. Do you see a build up of the emily. Plaques or the towel tangled before or after you see these changes in the blood brain barrier. And what could that connection. Be so asking some of those big questions big answers. Hopefully we’ll find them soon. Right absolutely did the study. Return any results about. Why people living with alzheimer’s may have had like a more rapid decline or is that just sort of ancillary findings. Because that’s what i’ve seen. Is i know of a few people. Living with some form of dementia got cova and it just like exploded their progression which is horrible but also fascinating than they really. Stark way did they. Did they find any reasons for that or they just kind of not paying attention to that part so in in studies that are being presented it at a. I see this year. What we’re actually looking at is the impact of covert in the and kind of the long term. We see changes in behavior. Memory and thinking and some studies are now showing. Some of those that are being presented are showing that. There’s actually some biology. That’s changing too. So you see changes in some of the The under or some markers of biology that’s associated with the cells that are dying. Or which is you. Know the kind of the progression of the disease or or some of the disease alzheimer’s specific brain changes as well. Now what this means. In terms of does it reversed itself. Is that something that it happens. And then your body able to recover. We don’t know yet but that’s that’s certainly one of the question. What are the other questions are.

00:10:01 – 00:15:05

Do you see these brain changes because individuals already have some of the underlying biology and you’re seeing an acceleration and we don’t know that answer but on the other side To your to your question around people with alzheimer’s there was a really large study that was presented earlier this year from the teaming in At case western in ohio that looked at medical records and show that individuals that had dementia were more likely to develop covert and and so really And that actually African american black individuals that had dementia were even more likely to develop covert than white individuals. That had dimension so really thinking about underscore of health disparities that both covert and alzheimer’s That we see in both of these instances and really raising that is something that we need as a society as a community should be drafting with raising awareness and then ensuring that we have that we’re addressing those disparities going forward. So was this just an extra special virus that just gave us all this extra information to study or do we think that there are other viruses that didn’t spread as globally as kovin. That could also have similar effects. Like what was it sars and yeah you bolt. yeah paula. there’s this sars which was another a sars and and the mayor’s pandemics They they were not as widespread. They had slightly different properties in terms of their Their infections and and what that looks like but we did. There were reports and individuals following those pandemics that experiences viruses. We did see an increase in reports of people always behavioral issues like sleep disturbances anxiety and some of those issues and there were also increased reports of cognitive issues as well which really was actually was why the research team at the university of texas san antonio approach the alzheimer’s association last spring should say this is the trends. We’re seeing very early. We don’t know if this is going to be similar but we think we should be bringing people together to ask that question and actually we. We formed an international consortium to start saying how can we all be asking questions in a in a similar way. How can we be collecting data and get the information as soon as possible. Globally about what. The impact of this virus may be an a lot of that was really based on learnings. From these these past instances. This is really fascinating great. Everybody could come together. So what does the study. Tell us that we should do to help. Maintain our brain health as we move forward in life. Obviously not getting cohen is a good start. That that the the big one don’t get cove it and you know if you’re not vaccinated get vaccinated if you do get cova. Take care of yourself particularly in your your cardiovascular health and as well as your overall health but i also would underscore that having hove. It does not mean that you’re going to experience these cognitive changes or these underlying biology changes. We don’t know why one person may experience them in one person may not but it is really important that if you do experience you are experiencing these symptoms or you are experiencing any changes that you have that conversation with your healthcare provider and that you bring that forward as part of your overall pair and do we need to worry about any other like other viruses or should we just focus on this one and avoiding it i think in general keeping your house you know keeping you hand washing your hands and and staying home when you’re sick and keeping yourself as overall healthy as you can be as really the best thing you can do for your your overall body and brain. I hope everybody learned that one last year. If they didn’t well my might not be much hope for them learning that one which also we were talking about how all these different researchers kinda came together to ask questions the same way so he could gather data the same. I think. That’s i think that’s the appropriate way of putting it. Which brings me to our next topic. Which is improving diversity. In alzheimer’s clinical trials. And i think that many of us learned watching the creation enroll out of the cova vaccine. Why that’s important Why is it important. Alzheimer’s researcher ago like lost my train of thought there. Yeah i mean. I think you’re one of the important trends that we have seen in the we don’t have the diversity that’s really reflective of our communities in clinical trials that in order to ensure that a treatment or a tool for early diagnosis is going to work in all populations in all communities we need to be including all populations and communities in our trials as well. And that’s i think increasingly important especially when we’re talking about the health disparities that we see in alzheimer’s in in terms of that Black african americans are two times more likely to develop alzheimer’s latino hispanic individuals or one and a half times more likely.

00:15:05 – 00:20:02

So how do we. We make sure that we have tools and that when we have treatments that they’re Appropriate for all populations must be a huge challenge and to what insights that we learned. Recently that will help increase participation in these under represented ethnic groups in clinical trials because again we have a lot more awareness of clinical trials after the cova vaccine’s creation. But that’s just me. I am in this world so maybe other people weren’t paying attention. Well no i would say you know. We used to spend a lot more time talking about what phase one was to phase three are. But i think we’ve seen this really play out on the main stage as it relates to the pandemic There is this you know that there isn’t a greater awareness of the need for volunteers and we certainly need to try to translate that into action. and in particular in in the alzheimer’s and related dementia face of of getting here than having people in The studies and and maybe before i even kind of go with some of what we learned. I just know that there are so many types of studies that are out there. There are studies that are people that are living with that already have cognitive issues or people. There are studies for people that are providing care there are studies for people that have had a family member or a parent. There are studies for people that just want to move the science forward. It’s there could be things that are about perceptions of disease there could be studies that are individuals that are cognitively unimpaired. That you know are are It’s really looking at the safety of a particular intervention or or or tool so. There’s a lot that’s out there. And we can all be part of that solution. And in fact. The alzheimer’s association offers a tool called trial match at the dot. Org so you can be part of that conversation and part of that solution and find the clinical trials in your community. It’s really like matching service for clinical trials where you can go on you fill out your profile you get your matches and then it’s really up to you on what might be the right fit for you And i think that that’s a that’s an opportunity that we all have and and some of the research that we did that is being presented at. Afc looks at that Black tino the native americans were significantly more likely to volunteer for a clinical trial if they were asked by person of their same race. And when you look at the reasons for why people Or why why why. Someone might participate in a trial. The number one reason is i was asked so you know really making those links and in terms of being at being in the community being president and having those types of conversations in the awareness is really important. Well i have a quick story. You’ll appreciate my very first night. At the alzheimer’s association’s caregiver support group was a researcher. From university of california. Davis does not far from me. She heard my story. Which is my mom had. Alzheimer’s now at this point my mom passed away in twenty twenty. But she had it for twenty years at least. My maternal grandmother had cognitive decline. Probably because of a brain aneurysm leaked for three months but they she may have also had other undiagnosed dimensions. The jury is out on that one. We’ll never get clear diagnosis. What was exactly wrong with her because she’s also got but my maternal grandmother also had dementia and this gal from uc davis looked at me and wanted me for her study so bad it was just one small problem not old enough and being in your fifty s and being told you not old enough for something is really kind of weird so i am part of trial match. Though that’s great that’s great one eight. You think that one of the things that you know. The alzheimer’s association certainly has funded a number of new clinical trials including including your backyard And i think we are seeing really a an incredible diversification increase in some of those early phase trials. Those phase one trials that are looking at a number of different biology’s and potential therapies that are targeting that really complex biology that we see in alzheimer’s and other diseases. So there’s really. There’s a huge need for volunteers to be in trial. and And so find out about trials that are in your community but also it’s on the research community to be in your community and asking that asking questions and engaging the community in that conversation now is there a gender The disparity as i did have the right word in research or is it generally pretty even to male and female at this point just not diverse ethnically depends on the trial. They think we do tend to see that women More often are volunteering for trials Over men but you know we it does somewhat depend on this study. It is worth noting that of the more than five million americans that are living with alzheimer’s more two-thirds of those are women so we also say that there is a greater number of people women that are living with alzheimer’s At this point in time as well.

00:20:04 – 00:25:01

So what are the new outreach. Tools that we can look forward to being implemented a read that you guys are coming up with new outreach tools for these underserved communities and so i’m curious i’m not an verse location so i might not see them or colleagues. At the national institute on aging have developed tools that can be available to researchers all around the country that really allow them to personalize the messaging to the community that they’re engaging and that really again. It’s one of the top reasons that people participate in. Trials is because they were up. And so how do we have tools and messaging that really is that resonates with the community and So this is going to be a great resource. it’s going to be available to researchers to us as as they’re engaging the community in their research because again there’s a huge need for volunteers across all types of studies that are out there which is why we should all consider checking out trial match and participating. Are there any other tools for connecting with a research studies. Where is that. The best. Why i think i imagine is really the most user friendly tool trial match pool of data from other resources. Such as clinical trials dot gov. So you know. People are certainly familiar with that tool but sometimes it can be a little bit more challenging to navigate and trial match hopefully as more user friendly experience with that allows you to to To navigate and to identify trials that are in your community and that you might be fit for or the person that you’re seeking for might be asset for and they do do some online studies i’ve seen lately generally and you don’t get connected to some of those well. I generally don’t qualify. Because i guess apparently i’m not old. There are studies though. I mean i think increasingly we understand more and more about the disease. There are studies. Some of the online studies go from age. Eighteen up there are other studies that are enrolling people that are in their fifties. I think it depends somewhat on. Maybe your location and whether the study is in your is in your community or in your backyard. Why can attest to trial matches. Definitely user friendly. I am not a person that likes to have. I don’t wanna learn how to use your tool you know. It’s like if i can be away. Yeah well yeah. If it’s easy and i could just kind of jump in and do it great if i gotta spend much time figuring out how to make it work and this goes across the board for all tools. If it’s not intuitive and easy. I’ve been back apple computer user since nineteen eighty. Two me i have not that same. But they’re still at the little the little Magmatic was my yeah. I was a sophomore in high school back then. Who that was away. Little ways. Back but yeah. It’s not intuitive. It’s like i don’t have time to like you know google and figure out and i mean i’m a reader but no it’s just if you want my help make it easy and trial match definitely makes it easy app though. I will make sure to start sharing that link more often. Is there anything else. We should know about helping. Increase diversity in trials participated in trials that we should leave the listeners. With i think this is something that we you know both in whether you volunteer whether it you know even if there’s not a trial that’s may be a great fit for you. It’s continuing to share your story. He part of the conversation whether that advocating walk again. Your local walk to end alzheimer’s and raising awareness in your community. I see your flowers in the in the back Raising awareness in your community about the cause and about your story and being raising that volume of of the conversation is so incredibly important and We’re we’re thankful for you to share these stories and share this research with your With your audience. While i appreciate you sharing much of your precious time with us. Today i look forward to learning more of what comes out of the conference the alzheimer’s association international conference and that’ll happen while i’m on vacation and so get to catch up with you guys. All when i get back. That sounds great. we look forward to it. Thank you so much. I hope you found this conversation. Interesting and informative. I feel that. Alzheimer’s is going to affect more and more of us as the population ages. And it’s going to take all of us to find a cure or prevention or treatment or hopefully all three be sure to go to trial match. The link is in the show notes as always. It is extremely user friendly. And there’s a lot of really interesting studies that even if you don’t qualify for one you might find them interesting just to know what’s going on. The alzheimer’s association reached out to me to do these interviews that you have heard this week if you liked them. Let me know semi an email.

00:25:01 – 00:26:47

Gimme a shout out on social media. I didn’t say no. Because i find it interesting and i assume that you will too so i wanna know if you like these so that if the opportunity pops up again i can bring them to you. If you don’t like them i’ll just do the interviews myself and maybe just not share them. I’m sure that’s probably not going to happen. The listener survey that i conducted in july and august is obviously closed and one of the questions was if you guys were interested in forming a community where you could talk to me. Somewhat directly asked questions. Give me suggestions on the show. And there was quite a bit of interest in that. So i would like to invite you to join the facebook page that is also linked in the show notes. You know just pop over there and say hi heard the episode and now i’m here and we will just slowly build this community of fadi memory listeners. That want to help each other and help make the show grow and become even better. I would love to listen and hear more from you. Two more quick items. Be sure to sign up for the email newsletter. Every week on saturday. I send a recap of what we discussed on the show my thoughts. What’s coming up the following week. A good recipe a catch up episode. And there’s always a cute picture of the dogs or something pretty from my life and be sure to sign up for the youtube channel. Because sometimes you might want to actually see some of my guests and there’s always. I’ll be in your ears again next tuesday.