Transcript

Meera Menon: the record.

MaryGrace Sharp: Perfect.

Meera Menon: Okay, it started recording. Okay, so just for some context, I think I mentioned this a little in my email. we're both the founders of a small initiative that's based in Illinois that aims to raise awareness for Alzheimer's and funds as well through community events.

Meera Menon: And as a part of our initiative, we want to talk to experts in this field, particularly individuals who have a personal relationship with whether it's working with Alzheimer's patients or dealing with the science behind Alzheimer's, all sorts of things. So, that's why we kind of wanted to interview you and have your insights on this as well.

MaryGrace Sharp: Okay. Awesome.

MaryGrace Sharp: Yeah, I'm happy to be able to answer whatever questions available that you have.

MaryGrace Sharp: And for a little bit of context to you, I am a program manager at the association.

Meera Menon: Yes. Yeah,…

MaryGrace Sharp: So I do all of the free education resources and support groups and volunteer services in a certain territory in Illinois. And so if you're interested in I can connect you to other people who work more on that patient side. I also have a lot of connections of individuals who are caregivers for a family member of some sort as well. So, if you need more interviews, let me know what type of I guess person you're trying to interview with. I have a list of different individuals who have different connections. So, just let me know and I'm happy to connect you to them.

Meera Menon: that would be wonderful. I mean, the more people that we have, the better it would be. So, yeah.

MaryGrace Sharp: Is this for a project that you guys are working on in particular?

Meera Menon: It's not for any particular project. it's kind of just like for our own interest. we do want to put it on our website.

Meera Menon: Also possibly on our Instagram, social media just to raise that awareness and grab more audience. with your permission, of course, we would do that.

MaryGrace Sharp: Yeah, of course.

MaryGrace Sharp: Yeah, sure.

Meera Menon: So, we'll get right into the questions. I have about 10 to 15 questions. what initially drew you to work with the Alzheimer's Association?

MaryGrace Sharp: Yeah, good question. I've always worked in some type of nonprofit space.  I was working at a different type of nonprofit called Asian Health Coalition where I wrote grants to increase healthcare services to Asian and African immigrants in the Chicagoland area. but it was a really small nonprofit. It was about 25 people and so I wanted to work at a larger nonprofit. the association has about 2,000 employees nationwide. It just has a little bit more structure to it. and has departments like IT and whatnot.  And so I was interested in just being a part of a larger nonprofit. The work that I do is very community- centered. So I'm in the community day talking with individuals who are impacted by the disease. And that was a very large drive for me was being able to do things on that community level and actually talking day-to-day with individuals affected by Alzheimer's and dementia.

MaryGrace Sharp: And so I think those were probably the two leading roles for me and what drove me to the association. I have family members who are also impacted by the disease as well. And that number has been growing significantly in the past few years.

MaryGrace Sharp: So much of what we try to do at the association and my role in particular is just spreading awareness and being able to give individuals resources wherever their dementia journey is.

Meera Menon: Yeah. …

Meera Menon: you said you were directly with Alzheimer's patient.

Meera Menon: Is there a moment that really stuck with you during your time there?

MaryGrace Sharp: Yeah, I do work a lot more with caregivers in particular.

MaryGrace Sharp: I have, interacted often with individuals with Alzheimer's or dementia. That's a really good question. I'm trying to think of one in particular that is super impactful. but I will say, what I do a lot is education programs.  So, I'll go into organizations, for example, either senior living or community centers of some sort, and individuals or family members will come up to me and things in particular like, I had my grandma or my parent had Alzheimer's or dementia and we just didn't know your association existed.

MaryGrace Sharp: And so a lot of the joy in my job is being able to directly help individuals who are impacted through the disease. Like I said, a lot of them are caregivers. So being able to tell them how to respond to dementia related behaviors or how to support independents through bathing, toileting, eating, dressing, and some of those, day-to-day daily tasks that a lot of caregivers have to do and provide them with those resources.  I've had just a lot of individuals come up to me who are in the midst of taking care of someone as well saying how helpful our resources have been to them and being able to care for their loved one. So as this goes on maybe I'll think of one in particular.

00:05:00

MaryGrace Sharp: But in general there are a lot of people that I touch on a day-to-day basis, but I'll try to think of someone that I was like, " that was a good story." But give me a second.

Meera Menon: Yeah. No,…

Meera Menon: you're good. speaking of the caregiver task, has anyone ever or…

MaryGrace Sharp: Yeah. …

Meera Menon: sorry, what is something people don't often see or understand about what caregivers go through emotionally, do you think?

MaryGrace Sharp: that's a really good question as so I think that caregiving, especially for this disease, is like you said, it's very emotionally tasking. It's also very costly. There's a large burden when it comes to the financial aspect of caregiving for this disease. in particular, I think right now there are about 12 million unpaid caregivers in the United States. And some of those caregivers are in the sandwich generation, meaning they're taking care of a young child as well as taking care of an older adult in their life. And so people have to quit their jobs entirely.

MaryGrace Sharp: Some people have to go part-time. it's a disease with a lot of financial burden. if I'm remembering the statistic correctly, I believe the amount of million hours of care is provided on an estimate.

MaryGrace Sharp: I can try to pull up some of those statistics right now. but it's a very financially consuming and emotionally in a lot of ways. And I think there are sandwich generation individuals at the current moment which I couldn't imagine how difficult that would be. Let me pull up some of this.

Meera Menon: Yeah, I think financially it's a big thing that people misunderstand.

Meera Menon: So, yeah.

MaryGrace Sharp: Yeah, this is also one of those diseases in…

MaryGrace Sharp: which I think a lot of people try to deal with it on their own because they don't want to ask for help. Maybe it might be a cultural reason or it's just a familial reason where they're, I want to be able to be the one taking care of my loved one without asking for additional help. And it's a large disease that has a lot of in particular, caregiver stress, up anxiety, depression, those types of things as well.

MaryGrace Sharp: Let me pull up the statistic that I give me one more. so let's see. Here it is. So there are nearly 12 million Americans providing unpaid care and those caregivers provide more than 19 billion hours valued at 413 billion.

Meera Menon: Wow, that is a yes.

MaryGrace Sharp: And I will send that to you. So

Meera Menon: a high statistic for It definitely changes things. Yeah. And you mentioned caregiver burnout. Do you think there's something that keeps caregivers motivated to keep going even though there's so many that are scared to admit that they have this issue?

MaryGrace Sharp: Yeah, I think it goes a lot to the benefits of this disease. I think that depending on the individual with dementia, just knowing that you are doing your best and you're providing a care to somebody that you might not know…

MaryGrace Sharp: if you could get that care otherwise that kind of high quality care…

Meera Menon: You are right.

MaryGrace Sharp: if that makes sense. we have a lot of videos of caregivers who say that it's a very arduous process. It's a very difficult process. but just knowing that their loved one is being taken care of and sometimes their loved one would even be able to say "I love you. Thank you for taking care of me." those are a lot of benefits that people have said when it comes to caregiving.

Meera Menon: And think when people acknowledge your help, I think that also changes a lot in what you do. Yeah.

MaryGrace Sharp: Absolutely. Yeah.

Meera Menon: And I know you said you don't work directly with Alzheimer's patients, but has anyone ever said something to you a caregiver or a certain family member or even a volunteer that you'll never forget something that they said to you?

MaryGrace Sharp: That I'll never forget. Trying to think. so I one of the most for me and…

Meera Menon: Yeah.

MaryGrace Sharp: and it's obviously going to be very different depending on who you talk to, but I actually right out of college was a special education teacher. So I worked in high school with individuals with intelle developmental disabilities and so forth.  And I was able to be a part of a program that we did with an organization that works with individuals with intellectual and developmental disabilities and talk about that crossover between specifically Down syndrome in dementia because there is a bit of a crossover. And being able to talk to people about what the 10 warning signs are within populations of developmental or intellectual disabilities was really amazing.

00:10:00

MaryGrace Sharp: and that's a program that I'll never forget because a lot of the caregivers that I was talking with were talking about how this is going to be information that they can give to other families who have individuals who have, family members either with Down syndrome or other type of intellectual disabilities because it changes a little bit. lifespans are a little bit lower and so the signs and symptoms will hit individuals at a younger age in that type of community. and so being able to talk to people about there are signs and symptoms to be aware of and there are things that you can now get into place that can help that person be to live as long as possible and to live as high quality of a life as possible.

MaryGrace Sharp: And on the other side of things, we talk a lot about the importance of early intervention and early access to treatment and a lot of being able to intervene early is knowing the signs and symptoms. And so we can do so many presentations about what is the normal aging cognitive decline because as we get older everyone will decline cognitively a little bit but then what's more indicative of something of Alzheimer's dementia and so many people have said because of our presentations they've been able to intervene early notice a sign that may have be happening in their loved one and…

MaryGrace Sharp: then be able to provide them with treatment options or with other medication options that have helped slow the disease progression in some way.

Meera Menon: And I think the biggest part about knowing the or…

Meera Menon: doing early intervention is that especially for younger individuals I think there's a huge misconception is it's not a disease for me it may be for older individuals or…

Meera Menon: older generations. what would you say to a younger individual, maybe like 20s or 30s, who believe Alzheimer's disease isn't a disease for them, but they could very well get it. They just don't

MaryGrace Sharp: Yeah. Yeah.

MaryGrace Sharp: So, that's called early onset As we know, Alzheimer's disease at the age of 65 is normally when people's increase or their risk elevates. but there's earlier young onset Alzheimer's which really means that they can get it before the age 65. The prevalence is about 7% so it's not as common. but it is possible. And the reasons why younger individuals get the disease there's a bunch traumatic brain injury is one of them.  And so individuals that may have been an athlete growing up or had a lot of concussions, things like that are all things that can elevate or increase somebody's risk. And so we always say while you might think that you are safe, we say anyone with a brain is, eligible to get the disease. And while it is rare to get it before the age 65, it's not impossible. we always say too that heart health is brain health.

MaryGrace Sharp: So if you think about it, every time your heart beats, 25% of that blood goes to your brain. And when you have heart diseases or things that will impact the amount of blood that gets to your brain or the way that the blood flow is, so it constricts your blood flow, that also increases risk. cardiovascular disease is a really large indicator sometimes of if an individual's risk is increased for Alzheimer's or dementia. And so, if you're not taking care of your body, if you're not taking care of your heart, that can impact your ability to get early onset or…

MaryGrace Sharp: young onset Alzheimer's as well. So, you can never say 100% that they cannot develop the disease. And even though they're younger, what you can do now to start preventing things or to start instilling healthy lifestyle habits is so important…

Meera Menon: Yeah. Yeah,…

MaryGrace Sharp: because that will impact you later on in your life.

Meera Menon: for sure.

Meera Menon: So how has your perspective on the disease changed since working so closely with affected individuals and families?

MaryGrace Sharp: I think I did not understand the prevalence of the disease.

MaryGrace Sharp: I think that, growing up, it's kind of similar to what you were even saying. I always was like, this is a disease that people get when they're 80 and you start to realize on a day-to-day basis that this impacts a lot of families. and getting on top of it early is so beneficial. not only does that allow you to be a part of treatments if that's something of interest to you or medication, but it allows the person with the disease to be a part of the decision-making process before they just may start losing their memories or start losing the ability to tell them what they want their life to look like. And so, the statistic is currently in 2025 there's about 7 million Americans living with Alzheimer's disease. in 2019, I mean, that number was about 4 and a.5 million.

MaryGrace Sharp: So that shows you how much this is growing. I think there's a couple of reasons for that. As we know, the baby boomers are getting older. So it's the largest pop or percentage of older adults we've ever seen in America. I think medically our advances are getting better. So people are living longer. and our diagnostic abilities are getting better as well. So more people are being able to get diagnosed. But even with those factors, I still think that 7 million is understated because a lot of people don't get a formal diagnosis, They're like, " my grandma had Alzheimer's or dementia." But they never actually got that diagnosis from a doctor. So, I wouldn't be surprised if that 7 million is bigger than that. but we do know formally normal about 7 million individuals are living with Alzheimer's dementia and that number is only going to increase as time goes by as these baby boomers are getting older.

00:15:00

MaryGrace Sharp: And so I think that right now is a time in older adult space that people are realizing some of these things and they're really trying to that's why it's so important for us to try to educate as many people as possible because even if you don't think it's going to affect you,…

MaryGrace Sharp: it could affect a family member. It could affect your grandparent, a loved one of yours. And so that's why we're just trying to get information out as many people as possible. It's a very very growing prevalence. Yeah. And like you said too with some of those healthy habits we talked about,…

Meera Menon: Yeah. I think that's…

Meera Menon: why early onset is also That's also part of our initiative. this is something that you could get as well. It's not just something for olders for elders as well. So

MaryGrace Sharp: they're called the 10 healthy habits for your brain. But that's stuff that you can start now regardless of your age. Those are all lifestyle factors that you can instill in your life to help mitigate some of that risk.

MaryGrace Sharp: And so that's why you want to be aware of it so you can start doing that now before being like, " I'm 50 and now I want to start implementing healthy habits into my life." And you've already had 50 years living where all of that stuff that you've put into your body or the way you've treated your body is going to impact you your health in some way. And of course dementia is just another way that health issues could arise.

Meera Menon: Right. Yeah.

Meera Menon: In your experiences,…

Meera Menon: what kind of support makes the biggest difference for families navigating a diagnosis possibly?

MaryGrace Sharp: I think one of them is just resources and…

MaryGrace Sharp: knowledge. responding how to respond to a dementia related behavior. It's not always intuitive sometimes. And people often think that they might be doing what's best for their loved one, but sometimes it's just,  And so just not gatekeeping information and just telling people of the ways that we recommend people communicate with those with Alzheimer's and dementia or react to behaviors for Alzheimer's dementia I think is so helpful. I also think the association we do a lot with support groups. So being able to have a space for caregivers who are impacted by the disease to talk with other caregivers and let them know that they're not alone in this journey.

MaryGrace Sharp: Sometimes it can feel very isolating to be a caregiver. And so with these support groups, it's often a great space for individuals to come together and talk about are some of the behaviors they're seeing, what worked for you, maybe it might work for, someone else. And just talking to others.

Meera Menon: Yeah, for sure.

MaryGrace Sharp: I think those some of the most beneficial things or supports that people can utilize from the association.

Devanshi Mohapatra: So, when you're talking to patients with Alzheimer's or…

Devanshi Mohapatra: yeah, basically when you're any support groups, what's the hardest question that you've come across that you've had to answer for them or if that  Makes sense.

MaryGrace Sharp: Yeah. Yeah.

MaryGrace Sharp: I think sometimes people like to say, because we talk about the importance of early detection and they'll say, my loved one's 95. Does it make sense for me to try to put them on those treatments right now?  because we have FDA approved treatments that slow the disease progression. And the hard reality is that there is no right or wrong answer. It depends on the situation. At the current moment with these treatments, they're pretty invasive. They're like chemo. So, you're plugged into an IV. You have to go to a hospital or a infusion center. It depends maybe once a week, a couple times a month, and you have to do it for up to a year depending on whatever treatment the doctor puts you on.

MaryGrace Sharp: And the difficult piece is sometimes people want to be able to say I want to put my loved one on those treatments because it might slow the disease progression but if they're 95 doesn't make sense because they're difficult to travel to they're very expensive at the moment and sometimes it doesn't necessarily always make sense for that individual to go through. I think also one of the most difficult conversations you have a lot of people are in denial about the disease.  people will say, this is just my grandma." Or, " this is normal." but Alzheimer's is not a normal part of the aging process. And so having conversations with people to say, I understand some hesitencies.

MaryGrace Sharp: I understand that you might not think that it's appropriate to go to a doctor and get assessed, but it doesn't hurt and it might be able to answer some questions about why is someone behaving in the way that they are or like I said being able to open the door to other treatment options, but there's a lot of stigma with the disease. there is also a lot of hesitancy with some people because they just don't want to face the fact that maybe their loved one has Alzheimer's or dementia. it's easier to just say, " that's just grandma." things like that.

00:20:00

Devanshi Mohapatra: Yeah, it's hard to have these conversations with people

MaryGrace Sharp: Another really hard conversation is taking the car keys away. people really struggle with that because it's taking away independence from somebody. It's taking away, …

Meera Menon: Yes.

MaryGrace Sharp: somebody's ability to feel like they are in control of their life. And we have a lot of tough conversations about when does it make sense to take the car keys away? and how does that conversation look like?  Absolutely. Yeah. Especially when you only get the context for having those few minutes conversations with people. I don't want to say, " yeah. Sounds like you got to take away the car keys because I don't know your family. I don't know the dynamic." but we also know how dangerous it is for individuals with Alzheimer's dementia to be driving. And so, you kind of have to weigh the benefits and the cost of having those conversations with people.

Devanshi Mohapatra: Yeah, that makes sense.

MaryGrace Sharp: So really what we do is we just try to provide the most information and then let them have the ability to make that educated decision.

Meera Menon: Just curious,…

Meera Menon: you mentioned an FDA improved treatment that could possibly slow the progression of Alzheimer's disease. Do you think this is a step closer to finding a permanent cure Possibly in the next five years, maybe.

MaryGrace Sharp: Yeah.  I don't want to put a date on it because I don't want to be the one that said, it's going to be in five years and then it's not." but I do think it's really really exciting time in research space. So, just a little bit of history. The disease was founded by Dr. Alzheimer's in 1906. And it wasn't until 1996, which is about 90 years later, that we were even able to get medications that treat symptoms. So, that doesn't do anything with disease progression, but that helps, with some of the behavioral symptoms like aggression. also insomnia is a very big side effect or I'm sorry, not a side effect but a big symptom of Alzheimer's dementia. and mind fog, forgetfulness, those are some of the medications that have existed. Then it wasn't until 2023 that we are able to have FDA approved treatments on the market that slow the disease progression. What does that look like? Does it stop the disease or cure it at all? No, we're not there yet. but it's the step in the right direction.

MaryGrace Sharp: that means we're able to have medications that can identify some of those plaques and tangles that are happening in the brain and target those in a way to untangle them. And I think that means that we're only steps closer to being able to even proactively stop those tangles from happening, which can then, really change what the disease looks like at the current moment. but we're not there yet. I think that in it's coming. hopefully soon. I don't like again I don't want to put too much of a timeline on it,…

Meera Menon: Okay. Yeah.

MaryGrace Sharp: but it took us 120 years to get to even this point. And so I'm hoping that means that we're on the cusp of something really great. And so give me one moment.  Sorry. I'm going to go my laptop charger.

MaryGrace Sharp: Hopefully soon.

Devanshi Mohapatra: fingers crossed that we find a cure hopefully soon.

Devanshi Mohapatra: It's

MaryGrace Sharp: No. And I think like you said, there's so much going on in research right now. And I think even showing that we have these, FDA approved drugs to slow disease progression is really promising because that's just the first step. Now they can now, identify plaques and tangles and try to untangle them soon. Hopefully, they'll be able to do things to prevent them from tangling in the first place.  Yeah. Yeah. Mhm.

Meera Menon: Yeah, I think that's really good news because I think one of the main reasons why this disease is so emotionally tugging is that there's no cure for it. even for other diseases,…

Devanshi Mohapatra: Okay.

Meera Menon: No, you're good. Even for other diseases, there might be like a cure or something to slow the progression of it. cancer, there's chemotherapy. but for Alzheimer's specifically, there's not a specific thing that helps with that. And so, it's really good to hear that there is a cure that might be coming. I was very about that.

MaryGrace Sharp: Yeah. I think that youth involvement is actually some of the most important…

Meera Menon: But yeah. Okay.

Devanshi Mohapatra: I'm going to kind of turn the conversation a bit to more like initiatives. and why do you think that involve youth involvement in Alzheimer's awareness is important?

MaryGrace Sharp: because I think your generation is very proactive. and I think that being able to tell individuals and high school ages in particular, even college age, what are some of the signs and symptoms or what the disease is amazing because then you guys can start initiatives like you're already doing as well as you may have a living grandparent, and you are able to step in and say, "Hey, mom, I've noticed this when I had a conversation with grandma. It wasn't normal. What does this mean?" And get the conversation started. right now I think that there's still, like I said, a lot of stigma with the disease. and it still is in that generation, not only in our grandparents generation, but my parents, you talk to so many family members who have a living grandpar or have a living parent of theirs, and they don't want to get any help or they don't think that it's, needed or, it's just normal aging, things like that when it's not.

00:25:00

MaryGrace Sharp: And so telling the younger generation what are the signs and symptoms, what the disease is only can help then I get people the right tools to help prevent it in some way or to help get people ahead of the game because like we said this disease is progressive. So it always starts somewhere and it gets worse. And if you can catch it early, it opens the door to so many things to medications, to treatment, but really just to allowing the person with the disease to tell you what they want their end of life to look like or tell you what they want treatments to look like before it's too late. because sometimes if you wait too long, the disease will make it so that person is not able to tell you where they want their life to go and…

Meera Menon: All right.

MaryGrace Sharp: then you're making those decisions for them, which you don't want to feel like you're making decisions,…

MaryGrace Sharp: especially at the end of life for a person without having that knowledge of what they want their life to look like.

Devanshi Mohapatra: Yeah. …

Devanshi Mohapatra: another one would be what advice would you give to someone maybe our age or…

Devanshi Mohapatra: even a little younger if they want to make a difference in this industry? Basically, not industry but initiative.

MaryGrace Sharp: Yeah, raising awareness is so important.

MaryGrace Sharp: So, being able to tell people what the difference of Alzheimer's or dementia is. I think that's a very common misconception or question we get as well as what are the signs and symptoms? because that means when you interact with people on a day-to-day basis, you will be able to know, something might not be normal.  let me bring that up to an adult or I mean I'm not saying you guys aren't adults but an adult that can then say maybe we should go to the primary care provider and see if we should get a cognitive assessment or maybe we should go see a neurologist because I think when you're interacting with someone on a day-to-day basis it's hard to notice changes right especially and this is a dumb example but I think of dogs when I go and see my friend once a month I will be

MaryGrace Sharp: Wow, this dog has grown so much. But for her, she's every day it's hard to notice that incremental, And it's the same thing with someone with Alzheimer's or dementia. Sometimes the changes are so nuanced where sometimes people are really good at hiding some of the signs and symptoms, but when you see them maybe on a monthly basis, you can be more of the advocate for them and say, "I've noticed this drastic change in their cognition.

Meera Menon: I shouldn't.

MaryGrace Sharp: 

MaryGrace Sharp: Maybe that's something we should take a look at." And it doesn't mean that individual, like someone who's younger, has to have the burden on them to figure it out and take care of it, but it's at least starting the ball rolling. Yeah.

Devanshi Mohapatra: Yeah. we're trying to get younger people to kind of be more aware of Alzheimer's. I'm just going to go into what we're doing right now, but we have an upcoming event. we're going to try to gather a bunch of younger kids and…

Meera Menon: Yeah. Yeah.

Devanshi Mohapatra: try to basically educate them on Alzheimer's and what are the signs of Alzheimer's or sorry not 10 signs but what are the signs of Alzheimer's and what you can do to help.

MaryGrace Sharp: Yeah, there are ton signs.

MaryGrace Sharp: That's what we always say is there are ton warning signs.

Devanshi Mohapatra: It's 10 signs.

MaryGrace Sharp: So, you're right.

Devanshi Mohapatra: Okay. I thought I messed it up. But yeah,…

Devanshi Mohapatra: basically we're setting up basically we're trying to educate other kids. Yeah.

MaryGrace Sharp: Let me know when that is…

MaryGrace Sharp: because I'm happy to be able to join. we have resources we have bookmarks and one pages and brochures and things like that that I think also could be very beneficial. and just of some things that you can hand out to people. I think that will tell them more. I mean, they're not going to be fun.  and they're like pens and things, but they also, I think, can tell you our helpline, some of the resources we provide because what all that does is give you the tools and resources to then tell your parents or to tell your neighbors or your friends that information and that it's like a snowball effect. So, let me know when you're doing those events. I'm happy to if I can come or if I can mail you things to do that.

Devanshi Mohapatra: Yeah. …

Meera Menon: Yeah, we're actually looking for individuals to speak at the event.

Meera Menon: It's an inerson event.

MaryGrace Sharp: Yeah.

Meera Menon: So, it would be great if you'd your insights.

MaryGrace Sharp: I can't do that.

Meera Menon: I'm so happy that you mentioned that. also,…

Devanshi Mohapatra: we can send you the sorry.

Meera Menon: sorry, I don't want to go off trail, but we also have a GoFundMe setup that's raised money directly to the Alzheimer's Association.

00:30:00

MaryGrace Sharp: Awesome.

Meera Menon: So, no,…

MaryGrace Sharp: Is it for one of the walk down Alzheimer's or is it just a fun race?

Meera Menon: but that too.

MaryGrace Sharp: I am happy to talk to you more. We have a lot of different things for fundraising. The walk to end Alzheimer's is one of them. So, if you want to make a team and go to one of the walks, the Lake County one in Libertyville might be the closest to you in Conan area. but it's free to join and it's just a really great way to spread awareness and whatnot. recently we got an email the other day, they're changing the name.  It was called the longest day, but it was an individual fundraiser event where you can partner with the association to do exactly what you're doing. but the reason why it'd be beneficial to do something like that is because then you get our support on our end. We can help make flyers, we can help give you things, we can help promote it. and so obviously what you're doing is awesome. So you're welcome to keep doing what you are, but if you want to get more involved in having the association back it, I can introduce you to the person who does that fundraising event.

Devanshi Mohapatra: Yeah, that would be great.

Meera Menon: Yeah. Yeah.

MaryGrace Sharp: Yeah, I'll do that.

Devanshi Mohapatra: I'm just going to say something about Our event is on July 12th. I don't know if you're free, but we can send you the details.

MaryGrace Sharp: Please do. Let me see. And if I'm not,…

Devanshi Mohapatra: Yeah. okay.

MaryGrace Sharp: I bet. So, Unfortunately, I'm in that age. I have a wedding. But let me ask I have a Well,…

Meera Menon: Yeah.

MaryGrace Sharp: I have a lot of community educators that's what they do. They go and they give presentations to the public on anything. You can do the 10 warning signs. You can do understanding Alzheimer's, dementia. We have h healthy living for your brain and body where we just talk about the things to do to keep your brain healthy. We've got a lot of those. So, I will also email you what those look like. And if you want to have a speaker, we can get that figured out. did I just disappear?

Meera Menon: Yeah. …

Devanshi Mohapatra: Yeah. Yeah.

MaryGrace Sharp: There we go. I don't…

Meera Menon: you're back.

MaryGrace Sharp: how that happened. but I'm happy to talk to one of our community educators. Can you pass me that afterwards? I'll email just send me that flyer and…

Meera Menon: Yeah. …

MaryGrace Sharp: we can get that started.

Devanshi Mohapatra: Okay. Thank you so much.

MaryGrace Sharp: Of course.

Meera Menon: could you also give the contact to the person you were talking for the new event that Alzheimer's?

MaryGrace Sharp: Yeah, I will do a warm introduction. So, I'll introduce you guys over email and…

Meera Menon: Okay.

MaryGrace Sharp: so we'll do that and then I'll also email you or email me and let me know about your event and we can try to like to get someone to come and talk to you guys.

Meera Menon: Okay, perfect. Thank you. just yeah,…

Devanshi Mohapatra: Okay, thank you so much.

MaryGrace Sharp: 

MaryGrace Sharp: Of course. No. …

Devanshi Mohapatra: Go ahead.

Meera Menon: two more questions. what do you hope to see in the next 5 to 10 years in the fight against Alzheimer's? Kind like a future look to it. Yeah.

MaryGrace Sharp: I would love to see a cure obviously. I think that is something that we are really fighting for. I think more even if let's say a baby step below that.  I think right now we're doing a lot of space in research to understand how the healthy habits impact individuals who already have the disease or if they're pro how much they help prevent the disease for someone who might not have it yet. I think that would be really interesting research to have information on because so many people want to know how to prevent, right?  And it's not necessarily like there is a one-sizefititall prevention that we have, but having a little bit more information on specifically what are the tips and tricks that we can tell people to do could be really really beneficial. I also think that having more FDA approved treatments on the market. Right now there are just two. they're called Lemi and Cansula. but I'd love to see more of it being covered by insurance. Right now they're very expensive.

MaryGrace Sharp: And I think being able to reduce the cost and increase will decrease some of the barriers that exist trying to get some of these treatments. At the current moment too they are so new that they only are done at certain hospitals. So people have to probably go downtown to Rush or Chicago which is all the way in High Park. they're not easy to get to and so increasing where people can get these treatments I think is also a really big thing. if we can get them, Lutheran General or to different hospital systems up north, northern Illinois, but, upward, I think from getting away from just being able to have them in the cities could be beneficial because that means so many more people can access them. And so, I would love to see,…

MaryGrace Sharp: treatment costs going down, where people can get increasing, more treatments existing. I think those would all be things that would be amazing to see in the next five years.

Meera Menon: And do you think maybe cost is also a big factor towards these treatments?

Meera Menon: Are they expensive?

MaryGrace Sharp: They're very Yeah.

Meera Menon: I mean I would assume they are. Amount of them.

MaryGrace Sharp: So, right now Medicare covers I think it's 20% on average and they can be anywhere between 12,000 plus. That's on the low end of the spectrum of what they could cost people. So, they're very expensive. and I think that's a huge barrier because if someone's 80, it doesn't make sense to spend that much money. you don't know always what the results may look like, right? Everyone's effectiveness is going to be a little different.

00:35:00

MaryGrace Sharp: But I do think that we're doing a lot in the lobbying advocacy space to go to DC, to go to Springfield, even in Illinois, and talk about why we need more funding for these treatments,…

MaryGrace Sharp: why these costs should be reduced because right now, unfortunately, that really has to come up from a federal level. so cost, I think, is a huge barrier. But I will say…

Meera Menon: Yeah. Yeah.

MaryGrace Sharp: if you're a veteran and you are registered in the VA, they cover it 80% to 100%. the VA has been amazing in this space. but not everyone's a veteran. So, there's just a lot of things that we're trying to do to try to mitigate some of those barriers. And cost is a huge one of them.

Meera Menon: Yeah, for I to totally agree. and then our last question was surrounding about or revolving around how small initiatives ours could support the work that you're already doing, but you kind of already answered that with how the walk to end Alzheimer's or different events like community outreach events could help with that. So, yeah, I think you already answered that. I think that could be really helpful for our audience as well.

MaryGrace Sharp: I also think that like you said the longest fundraiser events are always so helpful.

Meera Menon: Yeah.  Right. Yeah.

MaryGrace Sharp: All of the money that gets fundraised goes directly into research as well as being able to have my job exist to provide free education to people. And so fundraisings are always really helpful. doing the walk down Alzheimer's is free and helpful.  And telling people about the importance of this I think then we can get more people in the neurology field. Right now it's about a year waiting list to go to a neurologist but I think it's because we have a shortage of neurologists and so telling people more about these diseases because then who knows maybe it touches somebody in high school and they realize they want to go the pre-med route but they weren't going to go before.

MaryGrace Sharp: There are so many ways that I think just increasing people's visibility to what this disease is and…

MaryGrace Sharp: the importance of it can be so beneficial because you guys are so young and so malleable at this time.

Meera Menon: Okay. Yeah.

MaryGrace Sharp: And I think that, who even knows what getting this information can do to change one person who maybe then becomes an advocate or becomes, an influencer of some sort. There are so many ways I think that you can go just to spread awareness and knowledge for the disease. good.

Meera Menon: So yeah that is the end of our questions. thank you so much for your insights. It was very beneficial, very interesting. Yeah.

MaryGrace Sharp: I'm glad I could be helpful. I definitely would love to know, when you guys have your events, I'm happy to be able to see what we can do. if you're interested in volunteering for the walks, that's also We get a lot of high school volunteers just to help set up, take down, pass out coffee, pass out waters, things like that. if you ever want to just,…

Meera Menon: Yeah.

MaryGrace Sharp: help volunteer your time, those are always very beneficial. And I'm happy to introduce you to, the individual who does the walk kind of things. which is not me. But, there's a lot of other ways that we can help get people in your age involved in the association of some sort. or even, we always need social workers. we need people who can manage older adults, who can help, run support groups, things like that. they're always so needed.

MaryGrace Sharp: But I know those were your questions for you particularly. Do you have any questions about the disease in general that you would like me to help answer? I'm happy to, help answer any questions.

Meera Menon: …

Meera Menon: I mean, I've always been interested in kind of the science behind Alzheimer's,…

Meera Menon: how the brain works, and the difference between a healthy brain and an Alzheimer's brain, and how that kind of progression happens, and what sort of neurons get affected by that. maybe if you kidding

MaryGrace Sharp: Yeah. Yeah.

MaryGrace Sharp: So, I will kind of back up and just explain dementia and Alzheimer's and kind of go from there. So, this one of the most common questions we get. Dementia is just an umbrella term for memory loss.  And so anything that impacts somebody's ability to function on a daily living which does deals with memory loss we call dementia. I always compare the term dementia to the term cancer. There are hundreds of forms of cancer and unfortunately there are hundreds of forms of dementia. Alzheimer's is just the most common form. 60 to 80% of dementia cases are Alzheimer's disease. going to what your question is what makes it Alzheimer's versus others? It depends on the actual protein buildup that occurs in the brain.

MaryGrace Sharp: So in Alzheimer's disease, it's called beta amalloid buildup, which is just a protein that is just that we naturally produce, but in an Alzheimer's brain, it produces and it blocks the way that your blood can flow freely through different through your brain cells. So what actually happens is your brain cells start to die, So when these buildups happen, your brain cells die.  And if you look at someone post-mortem who has Alzheimer's disease, their brain's actually smaller because when die, your brain shrinks. And so that's one of the telltale signs for someone with Alzheimer's. At one point when we were only able to, identify it postmortem. Now there's a lot of ways to identify it while you're still alive, which is great. But it's the type of protein buildup in your brain.

00:40:00

MaryGrace Sharp: So for example, Louisibody, which is a more aggressive form of dementia, that is an alphasuclean protein buildup. So it's just different proteins that are really impacting the blood flow, impacting the ways that the brain cells are able to survive and that's when the brain shrinks. And when that brain shrinks, that's going to impact memory, thinking, behaviors. and so that's kind of a lot more of like the science behind it.

MaryGrace Sharp: In Alzheimer's in particular, you have beta amalloid buildup and then you also have these things They're called tow neuropiary tangles. and those are some of the telltale signs. It's really just what blocks the blood from being able to provide nutrients to the cells and the cells will start to die. Yep.

Meera Menon: And you mentioned the beta amalloid protein.

Meera Menon: Is this something that's already in everyone's brain or is it something that develops over time because of factors?

MaryGrace Sharp: So I believe something that naturally happens. so I think that let me…

Meera Menon: Okay.

MaryGrace Sharp: but I don't want to give you the wrong answer. give me one moment. Yeah. So beta amalloid proteins are present in healthy brains. it is considered just a normal byproduct of brain function.

Meera Menon: right?

MaryGrace Sharp: But normally what happens is they clear away.  So they'll show up, they'll get cleared, and it's just like a day-to-day everyone has them. But when someone has Alzheimer's, what's happening is they clump together and they form those plaques. And so normally I think people are able to get rid of them and stop them from accumulating. So I guess if you think about it in terms of cancer, right, it's just like an unhealthy growth of cells. that's what cancer necessarily is kind. I don't want to say it's similar.

MaryGrace Sharp: I don't want to like misspeak. People probably who are in more of a science space would be like what are you talking about? But it's when there's an unhealthy amount of that beta amaloid buildup that causes plaques that…

MaryGrace Sharp: then blocks the blood flow that then makes the cells die.

Meera Menon: Yeah. Yeah,…

Meera Menon: that's really interesting. I've always been interested in neuroscience, so I'm kind of just researching more to see …

MaryGrace Sharp: Yeah. Yeah.

Meera Menon: what specifically happens that causes this Alzheimer's disease.

Meera Menon: Yeah, it's pretty interesting. Yeah. yeah. thank you so much for that. I was pretty interested the science behind it. yeah.

MaryGrace Sharp: Of course.

MaryGrace Sharp: And what I'll do is after this call, I will send you an email with just some of our virtual resources so you're able to share them. I know that they're not physical, but in this day and age, I think a lot of people like virtual better So, we have brochures and pamphlets on what is the disease, what are the risk factors, the stages, things like that that I'll also send you a program menu. So, if you're interested in having a speaker at one of your events, you can pick what program would be, the most beneficial. And then let me know when the event's happening. I can help work on getting a person. I'll also introduce you to the longest day. And if you're interested in volunteering at all or…

Devanshi Mohapatra: Okay.

MaryGrace Sharp: you think others will be interested in volunteering for the walk, I'm happy to introduce you to a walk person as well.

Meera Menon: Yeah, those pampas actually might be really helpful…

Meera Menon: because we also do want to have an educational platform as well.

MaryGrace Sharp: Yeah. Cool.

Meera Menon: So, yeah, that would be pretty good.

MaryGrace Sharp: Yeah. And I can give you one pages that you can post on your Instagram,…

Meera Menon: Right.

MaryGrace Sharp: things like that. and…

Meera Menon: Yeah. Yeah.

MaryGrace Sharp: we're happy to be able to provide you.

Meera Menon: Specifically, you mentioned volunteering opportunities. Do you have anything in Alzheimer Associ association that deals directly that maybe we can have direct interactions with patients…

MaryGrace Sharp: Yeah. Yeah.

Meera Menon: if that's at all possible?

MaryGrace Sharp: So, unfortunately, that's not something that we are able to provide. our volunteering often starts at the age 18 or…

Meera Menon: Okay. Yeah,…

MaryGrace Sharp: 21. and so that's probably one of the biggest barriers. But if you want to help with the walk in particular,…

Meera Menon: of course.

MaryGrace Sharp: those are things that we are always looking for high schoolers or people who are, just willing to help out. and I know that's not maybe direct in or, directly with individuals. but it's still, doing a lot to help us as an association.  And so I'm happy. Like I said, the walk is probably the biggest thing that you guys at your age is able to do. Once you turn 18 and 21, those are where you can have more of those day-to-day or more of the interactions with support groups. If you want to join and be a support group facilitator, if you want to provide the education program, like you know how I'm saying I'm going to get someone to come to you, you can do that, too. But unfortunately, we have a few age restrictions.

00:45:00

MaryGrace Sharp: But there are some organizations I do know that have buddy systems where you can sit with an older adult and just be able to provide them some support. I don't know what the age restrictions are, but I can get you some of that information, too, because there are some organizations where not all of them are called buddy systems. but, there's a loneliness pandemic right now with older adults where they might not have family members in town or people checking in on them. And there are organizations who they just,…

Devanshi Mohapatra: Yeah.

MaryGrace Sharp: you can sit with somebody for an hour a week and just, play games with them or just give them some company.

Meera Menon: Yeah. Yeah.

MaryGrace Sharp: Those are some of those other opportunities that I can help, connect you to. I just don't know what the ages are. So, I don't want to promise you and then you're like, " I can't do that either." But they exist.

Meera Menon: I think I looked in specifically to Alzheimer Association and I think they did say that 18 was the limit. Sad.

MaryGrace Sharp: Yeah, unfortunately,…

Meera Menon: It's okay.

MaryGrace Sharp: but you guys are very close to that. So, hopefully one day. And I will say too, we're nationwide. And so, if you end up going to college and you're like, " all this time now, I would love to do some volunteering." You could always get in touch with the association's chapter there and do similar types of volunteering.

Meera Menon: Yeah, perfect. We definitely do that. Yeah. …

MaryGrace Sharp: Cool. Yeah,…

Meera Menon: last thing, I did I mentioned our GoFundMe. I'll send the link to you. Would you be open to donating? Maybe it's totally Yeah,…

MaryGrace Sharp: send me the link.

Meera Menon: of course. I think our goal is $2500. It's a little bit a over,…

MaryGrace Sharp: Okay. Yeah.

Meera Menon: but so far we have a hundred. Hopefully, we can get it. maybe the $500 as much as we can. Anything would be Yeah.

MaryGrace Sharp: And there's anything goes, a long way. the one reason why I say too,…

Meera Menon: Okay. You Yeah.

MaryGrace Sharp: if you end up doing a walk team, you can get a lot of incentives for raising money, too. So, starting a team, if you raise $100, you get a t-shirt. If you raise $500, you get a mug and I don't know what they exactly are. I know the t-shirt's hundred, but that's why I'm saying, too, if you want to get connected, you can at least get some fun swag with the money you fund raise as well. So, those are also some of the reasons why I think, starting walk games themes and those are really great because then you can actually earn stuff. And so, what I'll do is I'm going to just send a couple of emails. I'm going to connect you to a couple of different people. but that's I think at least…

MaryGrace Sharp: then you can make getting things for your efforts as well. But yeah, send me the GoFundMe. I'm happy to take a look at it.

Meera Menon: Yes, of course.

Meera Menon: Any amount is appreciated, so it's okay.

MaryGrace Sharp: 

MaryGrace Sharp: Yeah. Awesome.

Meera Menon: Yeah. Yeah. Okay.

MaryGrace Sharp: Feel free if you have any other questions moving forward. I'm happy to answer them. it goes to my Google Drive. So, I will send you in LinkedIn calendar. Yeah, I will send that to you so you get it. But feel free if you have additional questions, if you have additional fundraising events like this, let us know. We can be there and help you in some regard. we're just,…

Meera Menon: Okay. Yeah.

MaryGrace Sharp: trying to be as helpful as possible.  And we always need people. If you want to talk with caregivers in particular or if you want to talk to more of that research space, I'm happy to get you in touch with some of the doctors we work with or some of the other professionals or caregivers in particular. We have lots of caregivers that we talk with that have a lot of personal experience that can be probably better when you were saying what's a story that always stuck with you? I actually do have a story that stuck with me.

MaryGrace Sharp: isn't necessarily that helpful, but something that we always tell caregivers is the power of apology. especially in Alzheimer's or dementia space, sometimes people just want to feel heard. And I had this really great story, a caregiver told me that, they were a caregiver for this older woman with dementia and was for Thanksgiving dinner. They wanted to make cranberry sauce for Thanksgiving dinner. So, they spent all day making cranberry sauce. The caregiver went home.  The next morning, she showed up to the house and the woman was pissed off. And she just kept saying, "You came in last night, you ate all of my cranberry sauce. You came into my house last night and you ate all my cranberry sauce." Unfortunately, what ended up happening was she forgot that she ate her own cranberry sauce. But what happened was all the caregiver did was say "You know what? I'm so sorry. I understand why that's frustrating. Let's make some more before, I take you over for Thanksgiving." And that's all she needed.

MaryGrace Sharp: that woman, ended up being completely fine. And I think that goes to show sometimes, too, a lot of the behaviors with Alzheimer's dementia is very irrational. but the power of apology can go a very long way. And I tell that story all the time to people because, sometimes people will like, I don't want to apologize. I didn't do it or I don't want to apologize like I didn't do anything wrong.

00:50:00

Meera Menon: Yeah. Yeah,…

MaryGrace Sharp: But that doesn't matter in the eyes of that person. All they want to do is feel validated. and sometimes the power of apology can go a very long way. So, that's just a fun story that I forget I always tell.

Meera Menon: that's interesting. Yeah. Yes,…

MaryGrace Sharp: Yeah, I know. Unfortunately, She I guess kept going into the fridge She ate all of the cranberry sauce on her own and then she forgot she did, so she blamed it on the caregiver.

Devanshi Mohapatra: I don't blame her.

Devanshi Mohapatra: Cranberry sauce is very good.

MaryGrace Sharp: I was going to say,…

Meera Menon: it is.

MaryGrace Sharp: maybe that's a lot of sugar, but, it's still a delicious treat she had. Yeah. All right.

Meera Menon: I hope she enjoyed that, complain to her. No judgment here.

Meera Menon: Yeah,…

MaryGrace Sharp: I'm gonna send you a few emails. Feel free to reach out with any other questions you have or if you want to connect to me at another time, ask different questions. we're happy to be able to provide you even with social media things. Just whatever you think you might need, feel free to ask. If we don't have it, that's okay. But you never know.

Meera Menon: honestly anything helps. And any contact would be helpful as well. So yeah.

Devanshi Mohapatra: Okay. Yeah,…

MaryGrace Sharp: 

MaryGrace Sharp: Good luck. Are you also going into your senior year?

Devanshi Mohapatra: I am

MaryGrace Sharp: Senior year is a lot of fun. So, I hope you guys, enjoy it. I know that you guys decided where you're going to college yet or if you're going to college?

Meera Menon: We have a list, both of us, we have our college list, but it's not like,…

MaryGrace Sharp: Haven't decided yet…

Meera Menon: no, I know me personally, I have a list of 20 colleges, and I don't know why.

MaryGrace Sharp: 

MaryGrace Sharp: how to narrow that down. I'm happy to provide any of my ins. I mean, I'm not like anyone in college could provide insight,…

MaryGrace Sharp: but go with your gut feel, but don't put too much pressure on yourself. At the end of the day, you can always transfer and you can always switch careers. And so, I remember when I went through it, I was so stressed about my major. I was so stressed about …

Meera Menon: Wonderful. Yeah.

MaryGrace Sharp: what I wanted to do. You have your whole life ahead of you. And I would say 50% of adults end up switching their jobs anyway from what they started after college. And so if it's any consolation, don't feel like you have to make that whole life decision right now. I mean I have friends who decided to go to med school at 27 you can always pivot and…

Meera Menon: Yeah. Yeah.

MaryGrace Sharp: and so really I think it's just college is the time to explore your interest and you might find out afterwards you're like I wanted to go into biomedical engineering and maybe now I realize I want to go into electrical engineer I don't know I just made that up…

Meera Menon: Yeah. Yeah.

MaryGrace Sharp: but there don't put too much pressure on yourself go with your gut feeling you can always change it later it is okay that's my advice from unsolicited.

Meera Menon: Yeah. No,…

MaryGrace Sharp: I know you didn't ask for it, but that's my of course.

Meera Menon: it's okay.

Devanshi Mohapatra: No, thank you.

Devanshi Mohapatra: Thank you. That was very helpful.

MaryGrace Sharp: All right.

Meera Menon: Okay.

MaryGrace Sharp: Have a great rest of your days. I will email you and again feel free to reach out.

Devanshi Mohapatra: 

Devanshi Mohapatra: You too.

Meera Menon: Thank you so much.

Devanshi Mohapatra: Have a great day. Thank you. Bye.

MaryGrace Sharp: Hi.

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