[SPEAKER_05]: Or I go to the next slide. Let's start since you started out with six show of hands. How many people counted six. OK. I've got about six hands. I noticed you didn't put your hand back. How many people counted seven. How many people counted eight. How many people counted nine. How many people right now are not sure. And I wish we could do it find out from what's going on at home. The people watching this. There are nine. OK, let's do this together, all together now. Fairness, F, final, two, of, three, of, four, effective, five, six, effort, seven, eight, of, diversity, nine. There were nine. It was right there in front of you, and you missed it. Now, this is the part where I have to say, everybody take a deep breath, because this has got nothing to do with Alzheimer's. It's got nothing to do with memory. It's an optical illusion. But the point is, it proves my point that sometimes something is right in front of you and you don't, remember I said those warning signs? It's right in front of you and you don't see it until the wheels fall off. By the way, before we go to the next slide, anybody who would like to take a picture to dazzle their friends and loved ones? So you can always rewrite it and take that answer out. I still have family members who to this day still see seven and won't talk to me about it. Okay, let's go to the next slide. So I started out by saying the number one question that is asked of me is what's the difference between dementia and Alzheimer's disease? And I have met, just recently, just the other day I was at a program, Saturday I was doing a program, and a woman said that her mother had been diagnosed with, and I'm not making this up, a slight case of dementia. Like I told you, I've got doctors in the room, so please don't get upset at me at this, but that's a cop-out diagnosis. That's not telling you anything you didn't know. For you to have taken Nana to the doctor, you're concerned about her memory, you know something's wrong. And the example I always use for that, and this is a really bad analogy, but ladies, if you missed your period for three months and you went to go see your OBGYN and they told you you were slightly pregnant, come back in six months, if you didn't fire that fool, that's on you. So let's see what dementia is. Let's go to the next one. Dementia is an umbrella term. Dementia is symptoms of a disease that impacts average daily lifestyle. Now if I told you right now my right big toe hurt, what do you know? See, some of you are looking, see, I shouldn't have done the F game, because some of you are like, I ain't answering that question. All you know is my right big toe hurts. You don't know, are these fancy shoes too tight? Did I stub my toe? Is it painful enough that I have to use a cane because it impacts my average daily lifestyle? All you know is the symptoms of the problem. Now, under this umbrella, we've got Parkinson's disease. We've got other diseases. I love vascular dementia. And I've had this debate with some of the physicians I work with. Because back in the day, I swear to God, vascular dementia used to be hardening of the arteries. I see a lot of folks shaking their heads like, oh, yeah, I remember that. We've got dementia with Lewy bodies, just a whole bunch, frontal temporal lobe dementia. We've got a whole bunch of, so you see why it's important to find out what type of dementia that person has. Because all of these dementias, and by the way, 60 to 70% of people with dementia will have Alzheimer's. But again, I use my uncle, my uncle was a perfect example. Because my grandmother had Alzheimer's, when my uncle started showing symptoms, my aunt took him to a doctor, In fact, she took him to his primary care physician, who was an eye, ear, nose, throat kind of guy. And because of the history in my family, his doctor just simply, okay, well, you have Alzheimer's. Well, then he started getting other symptoms, which we remember did not resemble a grandma. And so finally, I convinced my cousin to have my, because my aunt wouldn't talk to me about this. Because as my cousin said, she still sees you as a 16-year-old boy who thinks he knows everything. So they're not going to talk to you. So I had them go to another clinic and get retested, and come to find out he had Parkinson's disease. Because there are similarities up to a certain point. Again, why it's important. Now, my doctor of 32 years just simply retired. Mike retired three years ago. We'd been together 32 years. He was a general practitioner. I swear I taught him more about Alzheimer's than he learned in medical. My physical was every August after the International Alzheimer's Conference, which he would read up on. And in the first half hour of my physical was him asking me questions about something he heard or saw at that conference. So what I realized was that if before Mike and I started, and in case you're wondering, I picked him out of the big book. Remember when you had the big book of doctors? I looked for two things, a doctor who practiced near where I lived and whose first name was Mike so I wouldn't forget it. That was it. But the point, what I learned from Mike and our conversations is if one of his elderly patients had come to him and said, I'm concerned about my memory, then Mike would have gone to one of his big books. He had those medical journal books. He would have pulled up a mini mental exam and he would have done that. And he admitted that to me because that's what he knew. But what him and I in our constant conversations realized, no, Mike, what you should do is refer them to the hospital that you have admitting duties at to the neurology department so that they can get a memory diagnostic workup. Because the difference between Mike doing it and a neurological workup at a hospital is the difference between you taking your new car to Jiffy Lube for an oil change or taking it back to the dealer. You go to the Jiffy Lube, they're gonna bang it out in 15 minutes and tell you you need new wipers. You go back to the dealer, they're hooking that puppy up to the computer and they're running a diagnostic workup to the point where they tell you what your air pressure is in your tires. See where I'm going. One is way more complete than the other. Let's go to the next one. So, and here's the other reason why you want to get this tested. Because some types of dementia are reversible. I'm going to repeat myself. Some types of dementia are reversible. Years ago, I had major surgery. When I came out from the anesthesia, knowing the symptoms that I know, I knew I had dementia. I was dizzy. I didn't know where I was. Forget trying to walk. That wasn't happening. But as my brain got more oxygen, as the anesthesia wore off, that went away. Anybody who is diabetic who's mismanaged their meds knows exactly what I'm talking about. You're going to show symptoms of dementia. But once you get your meds regulated, it goes away. We've got other symptoms, UTIs. It is my understanding that a UTI can again give symptoms of dementia. See, I've got folks shaking their heads so you know where I'm going with this. And by the way, For everyone who's taking notes, if you'd like, reach out to Sophie, and we can get you this. OK? Because I'd much prefer for us to have a conversation. I learned a long time ago, you give people stuff to read, they're going to do just that, and they're not going to engage. So you see, we have different types of reversible dementias. That's why it's important to get tested. Sophie, let's go to the next. And I'm not going to read all of this, so that's why I'm saying if you want copies of it, I'll get it to you. So what is Alzheimer's disease? For me, the number one thing to remember is Alzheimer's disease is an irreversible type of disease. It just gets worse. And today, there's no cure for it. And that's why, again, we're talking about research. That's why I've got these amazing folks here tonight to also talk with you about participating in research, because we need to take care of this. It is a disease of age for most people, but it doesn't necessarily mean the older you get. The older you get, yes, there's a greater chance you're going to get it. But remember I told you, my grandmother, who passed away at 67 years old, had Alzheimer's disease. My grandfather lived to 104, outlived two and a half wives, and that man was as sharp as the day I met him. So let's go to the next one. So this is those warning signs I was saying you're not going to see, like that F game. What's normal, what's not. And I'm going to pivot so I can see this. Forgetting what you went into the room for. Every single one of us. I'm watching the college basketball March Madness, and I'm sitting on my couch, and my partner, Bonnie and I, we had gone to Cheesecake Factory, and I had leftover cheesecake in the refrigerator, and she was in bed asleep, and my stomach was literally saying, Mike, go eat the cheesecake. You know what I'm talking about. And I got up, and I walked into the kitchen. And then it was like, oh my god, I dropped the dunk and blah blah, and I turned, and I, ooh. What the hell did I come in here for? Now, 10 minutes ago, my stomach was literally, whole sentences were coming out. What did I come in? And in case you're wondering, I do what I know other people do. I went back in, I sat down on the couch, and I went, cheesecake. I ate it and got in trouble, but damn, it was good. Also, all of us who wear glasses, at one time or another have said, anybody know where my glasses are? That's normal. That's normal. Everybody breathe, relax. We all, I mean, I used to jokingly say about my ex-wife, who never remembered where she put her car keys, her purse, her jacket. I used to say, if I ever get Alzheimer's, you're going to be butt naked and never go nowhere, because I won't remember where your stuff is. Forgetting a major event or a gift is not normal. I tell this story of this young man I met. This is what caused him to get his dad tested. They were from Oklahoma. When he was little, a tornado destroyed their house. It was on the anniversary of that day that he said to his dad, hey dad, you know, should we do something special for this day? And his dad said, for what? And he goes, well, this is the day of the tornado. What tornado? All right, see you younger. Now, all of the warning signs had been there, but he didn't see them. But forgetting that was a red flag that he couldn't ignore. Occasionally making the wrong decision. Okay, I bought stuff I shouldn't have bought. There's a certain website, I'm not gonna give it a name, but I got tons of junk from it. That's a bad decision. People were living with Alzheimer's. Our telemarketers and scammers dream come true. That's a disastrous decision, because they get them on the phone, and the next thing you know, they're sending gift cards to God knows where, or they're donating to save whatever tree. The point is, that's a bad decision. That is a poor decision or judgment making. We've got another examples of, okay, not remembering what day it is, or what time it is. OK, for the last four years, I know I'm not the only one that has to get up in the morning and look at their phone and know what the hell day it is. Come on. Ever since the pandemic, every day is like Saturday. And if you're retired and you don't have to get up and go to work, you are definitely on a Saturday schedule. And then there's a certain time. And this is the time of year. Think about it. It is right now 630. Think about it. It looks the same right now at 6.30 at night as it does at 6.30 in the morning. So you can be confused about day and time. That's normal. But forgetting what year it is. And the older I get, I'm always shocked at how, I just saw something that was from the 1970s and they're like, 40 something years ago. I'm like, wow, is it that long ago? So my point is, is forgetting times and dates, that's normal. Forgetting major, again, the situation with the tornado, that's not normal. And losing car keys, psh, okay. Not being able, to retrace your steps back home. We call that getting lost. Some people call it getting wandering. Believe it or not, statistically, six to seven out of every 10 people with Alzheimer's are going to get lost. They're going to forget how to get home. I think that number is actually higher. I'm thinking it's 100% of people with Alzheimer's, if allowed to travel on their own, are going to get lost. And the reason why I say that is because if I get this disease and I come out of stop and shop and I can't remember what my car looks like, or I find my car and I can't remember how to get home, and then two hours later I stumble in because I've figured out how to do it, Am I going to tell Bonnie how I got lost and I couldn't remember how to get home? No. Come on now. If you don't know nothing else about me, you should know this. What she's going to hear is, oh baby, you know, I went and got the milk and then I ran into Christine and next thing you know, we was talking and before. In other words, I'm not going to admit I could not remember how to get home. And that's why I think that other 30% fall into that category. But what happens is the part of your brain which gives you directions, gets impacted. And there's nothing scarier, I share this, years ago I was at the Hadshell for the Fourth of July and I saw this woman standing in the middle of thousands of people about to come to tears because she looked lost. How many people here have ever been lost? Raise your hand. Okay, as a child, Because if you was lost as an adult, you was not lost. You just got turned around. When my dad taught us how to drive, he said, if you ever get lost, look for the potential building and just point the car that way. Sooner or later, you're going to see a sign that says Boston. But this is a true story. When I was 10 years old, friends of my family took me to the English high school Boston Latin Thanksgiving Day football game, one of the biggest high school football games in the country. Game gets over. We're all walking out. I'm holding their hand. I let go. I go this way. They go that way. 2,000 people go between us. Next thing you know, I'm standing on the corner. And I don't recognize nobody. And I know I'm going to die. And I am crying. And I was raised, you don't talk to strangers. So I'm standing there. And people are like, little boy, what's wrong? And I'm like, mm. Just let me stand here and die. Just leave me alone. And then my uncle was a Boston police officer, and they were doing the details that day. And one of the guys sees me. And he goes, Mike, what are you doing here? And I'm like, oh, I can talk to you. Took me home. Saved me. Hear me now. I used to work in Watertown. So I used to go down Storrow Drive. And every time I drive by that freaking stadium, where that spot is, the hairs on the back of my neck, I deliberately avoid it because I still remember that fear that I was going to die. That's getting lost. I have never felt like that in my car when I didn't know where the hell I was going. I just pull over and pull out my GPS. There's a difference. You see where I'm going. All right, let's go to the next one. So here's some numbers. All right? And tonight, I also want to talk about there are different cultures where Alzheimer's impacts at a higher risk. Years ago, I gave this talk called The Invisible Population. And it's because, as you can see the first number, almost two-thirds of Americans with Alzheimer's are women. Now, here's a question. Ladies, why is it that almost two-thirds of you will get Alzheimer's than men. Bam! Live longer. You live longer than we do. And yes, I've asked that before in a room full of predominantly women, and I've heard, because y'all drive us crazy and blah, blah, blah. But there are other factors involved in this besides just age, which is again why research participation is important. It's funny when, I'm not gonna share that with you. Older African Americans are twice as likely to have Alzheimer's and dementia than older whites. That's a statistical fact. We're also less likely to get tested at an earlier stage. Again, a statistical fact. Folks will take Nana to the emergency room and they will tell the triage nurse everything that, they'll talk about her gout, they'll talk about her blood sugar, they'll talk about her hypertension, they'll talk about everything except the fact Nana can't remember the name of her granddaughter who's named after her. Why? Because all those other medical things they can't, they don't know what to do with. But memory, again, I told you, my grandmother forgot who I was with Uncle Tony. And we just adapted and I just became Uncle Tony because it made her happy. So we don't go get tested until the wheels, until we can no longer deny there's something wrong. Hispanics are also more likely to get Alzheimer's disease than their white counterparts. Now, and this is something that I've been looking into. The numbers on Asian Americans, they're really low. And I'm hoping maybe we can have a conversation with that. One of our presenters, Jin, is gonna be trying to join us virtually. But the point is, is if we don't participate in research, If we don't go get tested, then those numbers are off. And that's why we need to show up. Go ahead. Okay, I'm going to repeat the question, and I'm going to paraphrase, which is I've said African Americans should participate in research, but historically research hasn't actually benefited us. There's a history there. And you are absolutely correct. That's the elephant in the room. But since those studies, of, and I'm not talking about just Tuskegee, there's a whole bunch of other studies. Since those days, what I like to affectionately refer to as the barbaric era of research, the research industry has put into place methods to make sure that doesn't happen again. And that's the easy answer to that question. And also on top of that, it would be wrong of me to stand up here and tell you that, well, that never really happened and you gotta understand. No, I'm not that guy. The reality is is that there is a history. And because of that history, the institution of research, and I'm just talking about Alzheimer's. I'm not talking about all those other ones. I mean, for us to put up a flyer, we have to take it to a board who has to review that flyer to make sure that that flyer does no harm. A flyer like you see all the time. but working for a hospital. And I know that because I kind of got in trouble when I first started working at Mass General. I did a flyer, I put it up, and it walked its way back to me. And it's like, did you get approval for this? I was like, it's just a flyer for a community event. But I learned. And one of the things that I always like to tell people, if you start out in a research study, and at some point you change your mind, Nobody is going to guilt trip you to stay. You have every right to say, I'm done. It was nice knowing you. Goodbye. And walk away. Walk away. And then most likely what's going to happen? And I'm going to be honest, because I've seen it. Remember those old commercials? You tell two friends, and they tell two friends, and they tell two friends, and they tell two friends? That's what's going to happen. And that's one of the things that the researchers I work with and the research assistants, we talk about this all the time. If someone has a bad experience, they're not keeping it to themselves. So you have to be conscious of how you interact with people. I mean, one of the things, and those of us who are old enough remember this, and this is a really bad analogy, but back in the day, before universal health care, if you went to a certain hospital, the first question I was asked of you in triage was, do you have health insurance? Now, I grew up in Roxbury. And if the answer was no, they said, well, you need to go to Boston City. That's a fact. My grandmother, my mother, I've heard those stories over and over, which is why one of the things that we coach people who work with folks is when you ask the question, what type of health insurance do you have, what a lot of folks hear is, do you have health insurance? Oh, man, nothing's changed. Well, it has changed. And so communication is very important. Did I do good with the answer? Okay, she said she's satisfied. All right, so let's keep going. Oh, 70% of people with Alzheimer's live at home. Live at home. I used to run a support group and one of my support group members used to always say, my husband is going to die at home. He's not going to a nursing home. And she was serious about that. And so we found a way to bring her services in. And there are programs. I noticed this when I was taking a peek at the East Boston table. They've got a PACE program. It's a wraparound type of program whose main objective is, and my mom is in the Upperms Corner PACE program. Shout out to them. Their number one objective is to keep you home. and provide all those services for you. But here's the thing, 70% of those folks who are living at home with Alzheimer's are being cared for by caregivers, family. I was gonna say family members, but that's not true, because I've known senior apartment buildings where Miss Mary across the street, I mean across the hall, comes over every day to watch the stories. She's a caregiver. You know Bob down the hall make sure that that Julie gets breakfast lunch and dinner. That's a caregiver. There's no relationship there. It's just that that's what that's what friends do. And that's what keeps people at home longer. Let's go. So African-Americans I already told you this. We tend to get diagnosed at a later stage not just African-Americans other communities of color. That's why we call underserved communities because we don't go to get services. Go ahead in the back. Let's go back to the previous slide. Almost two-thirds of Americans with Alzheimer's are women. Yes, we talked about the fact that women tend to get it because, A, they live longer, but there's some other factors that involve that, which I've got some amazing women doctors here who can address that if it comes up. And the other one, older African-Americans are twice as likely to get it than whites. There's all kinds of studies out there that have different reasons. But here's the thing, because we don't show up to participate in that study, there's no definitive answer on why that is so. But, you know, and I'm not going to toss out stereotypes about diet. But what I will say this, think about this, anything that impacts the brain, anything, for example, high blood pressure impacts the brain. Diabetes impact, you see where I'm going with this, diseases that impact the brain. And as African Americans, we're practically number one in every single disease that I can think of. So me, I'm thinking that's probably one of the reasons why we're more likely to get this disease than our counterparts. Is that good? All right, all right, all right. This is a scary number. By 2023, if left undressed, undressed, unaddressed, nearly half of all Americans living with Alzheimer's will be African American or Latino. Now, you should know that I put these slides together, the first time I did this was years ago. And I remember thinking, wow, 2030. That's six years away. Six years away. So I'm going to just plant that seed right there. Again, remember, I started this out by, I'm not saying that this is our problem, but I'm saying we need to get in this game. Let's go to the next one. So getting a memory test, and it's so funny. Sophie and I were talking about this. And she's like, I said, let's take that slide out. She goes, no. All right, here's the deal. You can't go to Walgreens, CVS, or wherever and buy a memory test over the counter, OK? Remember I used that example of Jiffy Lube in a dealership? You need to get a neurological workup. Let's go to the next one. But I did like that slide. So again, talking to your doctor. Your primary care may refer you to a specialist. The key word in there is may. Unless you're one of the few people I've ever met that's got a neurologist as a primary care physician, you want a referral. Don't hope for one. Don't think you might get one. Ask for one. The Alzheimer's Association has a pamphlet, you can go to their website, on how to ask for a neurological referral. You know, remember my guy Mike? If you did, before we started having those conversations about Alzheimer's, if you just simply said you had a problem with your memory, God knows what he, you know, well, you know, change your diet or something like that. And in that conversation with the neurologist, things that are going to come up are physical exam, neurological exam, cognitive tests with paper and pen. We've all seen an example of that. If you've watched the news, a certain ex-president, I'm not going to name any names, was bragging about how he could, how most people don't, can't pass that test about being able to remember elephant, TV, apple, whatever, you know. There's more to it than just that. And remember again, we started earlier talking about under the umbrella of dementia, all of those diseases. That's why it's important to have a neurological workup, because you want to make sure you got the right disease. You don't want to waste time going around the wrong track. Go ahead.
[o9F0qYH9Geo_SPEAKER_05]: Thank you very much.
[SPEAKER_05]: So the question was, how do you encourage people to advocate for themselves and their family members? And it's interesting, because I've got Dr. Tony Farm here, but I'm not going to call him up, because that would embarrass him. I'm going to do one thing better. Christine, how would you answer the question about how can folks advocate for themselves? And if you want, I can take the microphone, or you can come up. This is a sneak preview, because this is Dr. Christine Ritchie, who will be speaking later.
[Christine Ritchie]: So thanks for the question and okay get closer. So this is very important and it's hard because many of us sort of think that oh it's an authority figure or somebody I need to just be deferential to and show respect all that but this is your body. and you know your body the best, and people who know you also know your body the best, and so if you feel like it's not, like the person's not listening to you, or they're actually not paying attention, then please stand up for yourself. Please say, I'd like a second opinion, or could you refer me to a specialist, or can you answer these questions? don't suffer in silence. And I think a lot of people suffer in silence. And then they go home and they're like, ugh. So when that feeling starts coming, start asking questions like, I'm worried about this. Can you help me understand this? And if you're not getting satisfactory answers, then say, could I actually have a second opinion? Could you refer me to someone else?
[SPEAKER_05]: All right. Thank you. Come on. Don't be afraid. I mean, come on. I know I'm not the only one who's seen people lose their minds because their French fries were cold at McDonald's, but will walk out of the doctor's office going, I have no idea what just happened. Come on. Be active. You are your family, your loved ones, number one. And I'm repeating what she said. You are their number one activist. If you don't do it, no one else is going to do it for them. All right, let's go to the next one. Go ahead. I'm going to steer you back. So the question, what if the patient is in denial, or if the doctor is like, no, you're good. Don't worry about it.
[Christine Ritchie]: Yeah, so either way, right? So either the doctor's not sort of acknowledging the problem, or maybe you're the care partner, and the person who's actually experiencing dementia is in denial. So unfortunately with dementia, it's not that uncommon for people to not have insight into their illness. So they may think they're fine. And this is tricky, right? And this is why early on it's worth maintaining a good relationship with that person and getting them to allow you to be a spokesperson for them, to get them to sign, you know, this HIPAA waiver and say, yes, I can talk to you. That way you talk to the doctor and say, let me tell you what I'm observing. And that's very important. And most, you know, clinicians are crazy thankful. to get a different perspective because they know that a lot of folks who are living with dementia don't actually, they're not aware or they don't have insight into actually what's going on or they're very afraid and they're afraid of what's gonna happen. But either way, that's where the relationship and building that trust and giving them the opportunity to allow you to be their spokesperson and they sign a waiver for that, then that doctor can talk to you.
[SPEAKER_05]: Yeah. Something else I want to piggyback. Get help. With my mom, you know, I'm the bad guy. My older brother is the good guy. We've got the good cop, bad cop thing down to, you know, mom, you know, you got to do this. If you don't do this, we're going to have to go do this. Whereas he turns around and goes, now, mom, you really know you don't want Mike to do blah, blah, blah. And I'm like, I can't believe, but it works. And it makes life so much easier. Go ahead in the back. So the question is, is there an average age to start looking for those warning signs? So that's a two-part question. The first part is that it is not uncommon for somebody to start showing symptoms in their 60s. But remember what I said. You're not going to notice that. OK? Now, there's a very small percentage of people that get what we call early onset Alzheimer's. Those are folks who get it at a much younger age. And I mean, I've seen studies of people in their 40s, early 40s. Now, let me say this. For everybody in this room right now wondering, could that be them? You wouldn't be wondering, you'd already know. Because for something like that, first of all, it tends to run more aggressively in a family. I mean, years ago I used to work for the Alzheimer's Association, and I met mothers who were caring for their children. They're adults, sons and daughters. So my point is you wouldn't be sitting in this room wondering if you fit that category. You'd already know it. And that's called early onset Alzheimer's disease. Again, another reason why it's important to get tested. I had a question all the way in the back. You threw your hand up. Have we answered it? OK, Christine, you don't have to come up for this one. I got this. I got this. So the question was, is you and your doctor disagree. And you're looking for another type of care that your doctor seems to be downplaying. That's when you go get a second opinion. You just simply go get a second opinion. And no one's feelings get hurt. And that's something I wish people would understand. Going to go see another doctor because you don't agree with your primary care physician, life goes on for them. No one's feelings will get hurt. It's not like they're going to fire you tomorrow or cancel you as a patient. You just want a referral. That's all. It happens. Let's go. So what do you do after you've gotten tested? You've gotten your loved one tested. You've gotten the results. It's Alzheimer's, it's mild cognitive impairment, it's Lewy bodies, it's one of those, you now know exactly what's wrong. What do you do next? You learn everything you can about that disease as the caregiver. you have to become the expert on that disease. Primarily also so that when you're sitting down, and as Christine said, you wanna find the HIPAA forms, you wanna become the healthcare proxy, you wanna get guardianship. Alzheimer's is a disease not of if, it's when. when that person is going to reach that point where they can no longer do certain things. And so you wanna get ahead of that. And I always tell people, under the guardianship thing, if you jump on it at an earlier stage, it's simply just getting some paperwork signed, going before a judge, boom, you're done in a matter of, it doesn't take that long. And it doesn't really cost anything. If you wait or family, and I always tell family, everyone needs to sit down and be on the same page. Because I've seen people go to court and fight over dishes. Well, mom said I was going to get those dishes. I'm not making this up. And what happens is they go get lawyers. And those lawyers go to court. And the job of their lawyers is to make the other side look like if you let Nana go live with them, she's going to die in a day. And the judge, who does not know this person, listens to both arguments. And it is not uncommon for that judge to appoint another attorney as temporary guardian, who never even met Nana. And think about it. That argument that you just heard, well, now the judge can't let Nana go home alone or with either one of those two, so the guardian has to put Nana in an institution. You see where I'm going with this. So it's important to jump on this as soon as possible. Learn everything you can. Take care of all of those legal issues so that the rest of the time, you can just do the caregiver stuff. And you also, the more you know, the less you're surprised. Okay, and you can get this information, by the way, by contacting your local elder service agency, or the town of Medford, and Sophie, and the team that's here. There is a very good team. I've got a chance to talk with some of them. So there's services out there for you. Okay, so that's two things here. The question she asked is, is there types of testing that can pinpoint exactly what the person has? As far as the autopsy, and this is something that whenever you see a documentary or anything about Alzheimer's, you always hear about plaques and tangles, which is usually done after the person has passed away and has donated their brain to science, and they do an autopsy, and they're looking for certain things. There's a study that just recently came out that showed that there may be some people who may have these things, these plaques and tangles, but never get Alzheimer's. But so I'm just putting that out there. As far as the first one, again, if you remember when we talked about getting tested, they go through a battery of tests. It is not a 15-minute thing. I've heard of some folks who've gone back, it's taken two days because the person got tired on the first day and they had to come back to continue the testing. Because the whole purpose is to eliminate all of those different types of diseases we saw. Go ahead. That's good. Amyloid, right.
[SPEAKER_12]: It's wrong. When you're sitting there and you're looking at something, you know what the name of it is, but you don't know how to deal with it.
[SPEAKER_05]: Or you don't know what the name is and you think you might, that's a problem. So in other words, and I'm going to, because you mentioned your name Julie, what Julie was sharing was is that what made her go get tested and tell her doctor something's wrong was she could no longer deny something wasn't wrong. Hold on a second, Julia. I'm about to make you famous. Kevin, don't hate me for this. We're having a Phil Donahue flashback.
[SPEAKER_12]: OK. My aunt, my mother's sister had it. OK, that's fine. Now with my family, whatever one side of the family has it, The other side has it. Now, my father was diagnosed with it. His niece was diagnosed with it. Another nephew was diagnosed with it. I says, I'm going to the doctor.
[SPEAKER_05]: So Julie, what you're saying is that you, just like I said with my grandmother, you've seen it. You know what to look for. And if told, oh, don't worry about it, well, you know, yeah, no, I need to get me another doctor. And thank you for sharing that. So let's go. Oh, go ahead. Ooh. You know what? You're the first person to ever ask me that question. Christine, that's a good question. Is there a certain age? Thank you.
[Christine Ritchie]: So the question is, is there a certain age where you should get tested? The answer is no. There is actually a national organization that sort of makes recommendations about what makes sense for screening and what doesn't. And so the big answer is no, but it's a but. Because the but is, if you have risk factors, like you described, where you have a family history, or maybe you have a history of diabetes and high blood pressure, as Mike was talking about, and you have other things that may put you at increased risk, yes, it's appropriate to get screening. And in fact, more and more, we're encouraging people, as Mike was saying, especially now as we start having treatments that work better when you're actually earlier on in the course of dementia, not late, then you really have to get screened and tested early. And so increasingly we're thinking about how do we make sure that people who actually are at higher risk are actually getting screened. So you're going to start seeing some changes even, you know, over the next year or two where people are recognizing, especially with these new treatments that are coming out, we need to give people the opportunity to get tested early. It might be, but I think because we have more and more even blood tests, and you heard about the PET scan, it'll be easier actually to evaluate people when things don't look right than it has been in the past. And even, what was it Liliana, this past year, even the way we think about the categories and stages of dementia has changed because we have more information from blood tests, from fluid from the spinal fluid, from the brain than we used to, to help provide differentiation about things. Right, right Yeah, so So the question is What if your insurance makes it hard for you to get the kind of testing that you think might be appropriate? So this is a real thing and actually dr. Ramirez Gomez can speak to this because she's actually like Navigating some of this right now but by and large if you have risk factors, and then you screen positive, that is, there are things from your memory test and maybe other things that suggest that you actually are at very high risk for dementia and we're specifically worried about differentiating between different kinds of dementia or being considered for treatment, that's when the insurance companies are much more likely to pay for it. That being said, there are some insurance companies, they're still a very high deductible, right? So they might pay something thousand, but they don't pay all of it. So it's worth asking these questions on the front end and making sure that you can go through it without coming out with a bill and going, wait, what's this? Dr. Ramirez-Gomez, do you want to add anything? Okay. All right.
[o9F0qYH9Geo_SPEAKER_05]: Right.
[Christine Ritchie]: Right. Right. So you heard Mike talk about mild cognitive impairment, and that is where people are starting to have problems with their thinking before they're actually at the point where they're having trouble getting stuff done, where it's not interfering necessarily with their ability to pay their bills or things like that. That is the window of time, and when people are just early on in their dementia, when they're most appropriate for actually getting some of these newer therapies that have just come out in the past year or so. And the reason I keep talking about Dr. Ramirez-Gomez is because she actually runs our treatment center at MGH that's actually providing these kind of therapies, which is why I wanted to get her involved.
[Ramirez-Gomez]: Hi, good evening, and thank you for being here. So as you heard, I am a neurologist. I am a doctor who takes care of patients in my clinic and at the hospital, at Massachusetts General Hospital, that present like that with concerns about their memory, or why I am forgetting these things, or having difficulties recognizing certain things. And that's our job. So, actually, we have these opportunities to listen and pay attention and do the work that Mike was saying. You know, you go to this place and you have all the concerns heard, and we actually take a very good history and a detailed evaluation. We look for all of these red flags, and it is true. I am glad that you brought up the PET scan and Dr. Ritchie mentioned about blood tests and things that may come up in the very near future, because we really pay attention to this, because now we have available treatments that are more helpful when we use them early. It is true that we have all this availability to do testing, and many times, as doctors, I heard about advocacy. You, as a patient, saying, I need this test, or I have this concern. We doctors advocate, too, and that's what we do when we believe something has to happen. Many times we even have to talk to insurance or send letters or appeals and speak on your behalf because we really think this is necessary and this is going to make a difference in the life of someone because we provide a specific diagnosis. Someone asked if we can know for sure what type of dementia it is, and yes. Yes, we can get to that level of detail. And also to your question, when you say why is important that we participate if maybe before there were all these difficulties and it didn't benefit us, why is important now? Because of this, because we want the treatments to benefit everybody. And we want to make sure that the differences we have in the numbers that Mike shared, Those numbers matter because we need to understand what's the difference and, for example, how the treatments will impact each of us in a different way. So we have really clinics in which we evaluate people of colors. For example, we evaluate people that speak different languages. And we want to really include everybody. So that's the word that Mike was using at the beginning with the F game.
[Christine Ritchie]: Dr. Ramirez-Gomez talked about how important it is to actually seek attention and one other kind of interesting backdoor approach towards getting the kind of interesting help that you might want is to volunteer to be participating in a study. What we know about participating in these research studies that are related to dementia is that number one, many people actually are helping us find the answer to some of these newer medicines. But regardless, you get a very comprehensive evaluation. A very comprehensive evaluation. So you learn a lot in the process. Then the other perk is that then you get to know people. They know you, you know them, there's a relationship there, and if things come up, you're much more likely to have somebody, even as a part of the research team, who's like advocating for you. So, it's a kind of interesting thing to think about, and we know this actually from big studies, that when you have people who actually participate in research and compare them to people who are just like them, who don't, The people who participate in research do better. And we're like, why is that? And it's probably because of these other things. They're getting more comprehensive evaluations. Somebody's looking out for them. They've developed a sense of relationship and connection. So that's another interesting sort of backdoor approach to also getting support. And there are a number of studies that we have available. You heard Mike say about 42 studies that we have. They're not all for the same thing, but we have studies for people who have no issues with their thinking or their memory. We have folks who have what we call subjective complaints. That is when they get tested, it looks okay, but they know something's not right. Then, we have actual studies for people with mild cognitive impairment and dementia, the whole spectrum. We want to support you if that's of interest to you, so please reach out to us about that. Dr. Ramirez-Gomez, do you want to add anything?
[Ramirez-Gomez]: Yes, thank you. Well, now that we are talking about this and why research and participating and getting comfortable with the medical community, it's because we care. Like really, the newer generations and how we are getting together and how things are changing, all of that is true. And I want to share too that when we care for each other, as Mike mentioned, we care for our neighbor, for our family member. We have this word of being a caregiver, a care partner. We also want to invite some of you that may care for friends, family. We also have studies in which we want to provide resources. for caregivers, care partners, and it's an invitation, too, that we know Alzheimer's disease and dementia and the related dementias is not a condition that it only affects the person who has the memory loss or the symptoms. It affects the whole family, the community, the neighbors, their friends. So we include everybody because we want to make sure the well-being of all the people and all the persons that are struggling with this is taken care of.
[SPEAKER_05]: So I'm wrapping up my part with my warm and fuzzy because you just got a sneak preview of the second part of this because so I said I was gonna wrap it up with warm and fuzzy here we go I'm gonna give you an example of the difference between emotional and historical memory and I'm going to tell you a story. This is an actual true story. It's 1970-something. I am sitting at 15 Rockville Park with the then love of my life, who is wearing Gina Tay perfume. We are listening to WIOD 1090 on your AM dial. The disc jockey is Sonny Joe White. A song comes on called Dedicated to the One I Love, and we kiss for the first time. Everything I have just told you is historical. Everything. And if I get Alzheimer's, at that point in my life where I will forget everything I just told you. But if it's a warm summer day, and I am sitting outside, and God help me if a woman walks by wearing Gina Tay perfume, and a song dedicated to the one I love comes on, I am 16 years old, madly in love, and just sitting there, Because what I want you to understand is that what this disease steals from our brain never touches our heart. Because love will always remember. Now, I told you I was going to end it with the warm and fuzzy for me. But I'm going to hand it off to Christine. We've got you queued up.
[Christine Ritchie]: Dr. Ramirez Gomez already got us started by talking about care partners and caregivers. And as she said, and I think she said it so beautifully, when someone is experiencing dementia, it doesn't just affect them, right? It affects those who are with them. It affects those who care for them. And it's its own journey for that person who's that caregiver. So I want to just spend a few minutes talking about caring for the caregiver. and how there might be things that we can do to support people who are caring for that person living with dementia. So if we go to the next, do you want me to do it? So in this country, By and large, it's often family or people who are like family who are caring for us if we're living with dementia. Just a few things about me. My specialty is in geriatrics and palliative care. And I had the honor of caring for my father in my home when he had Lewy body dementia. And so I thought I knew a lot as, you know, going through all the training about caring for people who live with dementia, but when I became a caregiver, it was a whole new education for what it was like to be in that space with somebody. And in the United States, about 11 million people are providing that care. And it's not paid care. And it actually adds up to a lot of money, probably $325 billion worth of caregiving that we're doing for our families if we actually got paid to do it. And about 40% of caregivers are men. I think sometimes men get short shrift on this. I just want to say there are a lot of men out there who are doing a great job with being a caregiver. And then in this country, about a third of caregivers are over the age of 65, and about half are caring for a parent. So it does affect all of us. We could be that partner. that life partner. We could be the daughter. We could be the daughter-in-law, the son, son-in-law, niece, nephew. So it can affect all of us. So if we go to the next slide. What is important to keep in mind if you're a caregiver is that it is crazy important to take care of you because the physical and health consequences of caregiving are not nothing. And when we look at studies and research about caregiving, what we find is that if you are a caregiver, you're more likely to be depressed, you're more likely to have sleep issues, you're more likely to be hospitalized, you actually have a higher mortality rate than you would be if you weren't a caregiver, and you're less likely to get help. You know, I got to take care of my person here. I can't take care of me. How am I going to do that, right? So we don't fill our own medicines. We don't actually take care of ourselves. That puts us at risk. And you know, I'm sure you've heard this before, but when you're on a plane, they say, please put the air mask on yourself first before putting it on the person next to you. And we need to think about that, but we often don't. That when you're caring, if you're a caregiver, When you're caring for yourself, you are caring for that other person. And it's actually really important that you're doing that. And sometimes it takes actually some intentionality and some work to actually figure out how the heck I'm going to take care of myself. So if we go to the next slide. Unfortunately, in this country, there are a lot of care gaps for caregivers when it comes to dementia care. So as a caregiver, you're much more likely to experience a lot of challenges. And I want to go over some of them with you and then also talk about how we can address those gaps, OK? So if we go to the next slide, we often find that what people don't get told when they go to the, so a lot of times people go to the doctor. If they're fortunate, they'll actually have someone tell them what's going on. And they'll give them some idea about what the future is going to look like, right? But a lot of people, as Mike was saying, they're not told what this is going to look like. What is this going to look like two years from now? What do I need to be prepared for? Actually, living with dementia right now is a terminal illness. So unless, until we get a cure, We're looking at a journey that can sometimes be quite a long journey that's going to be associated with a number of losses along the way. And how do we prepare for that? A lot of times we don't get that information knowing that, you know, what this is going to look like and, again, by what kind of dementia. Different dementias actually look different in terms of what their journey looks like. So knowing what kind of dementia is actually is helpful for sort of thinking about what the future is going to look like. And then also knowing that there's going to be a lot of uncertainty. Because the way dementia works is it's a lot of ups and downs. Like if you get a urinary tract infection or you fall or something, then you're going to have a bad spell. And then you might recover some. And then you might have another bad spell. So even though it's a long, slow journey of decline, a lot of times there's actually fits and starts. And that uncertainty can be very hard for caregivers. And also, when you're the caregiver, you're not even noticing what's happening. You might not even know, actually, that you're getting close to the end because you are just doing it, right? So actually, when I was caring for my father, he was getting very sick near the end. And a friend of mine said, don't you think you're, now remember, I take care of people who are at the end of life. So this is funny. And she said, don't you think your dad is ready for hospice? And I was like, huh. I hadn't thought of that. And in fact, he was. And he benefited from hospice. But the thing about it is I was so close to it, I couldn't see it. And that's the other thing. We need other people to come alongside us that can give us guidance and come along the path with us. The second thing is getting information about how to deal with many common behaviors that occur when people are living with dementia. Different people have different kinds of behaviors, but things that are fairly common are something we call apathy, which is just not being as interested in the things that we've been interested in before. We can get more anxious if we don't actually know what's going on around us. That can make us feel anxious. we may start seeing things that other people are not seeing. And in Lewy body dementia in particular, it's not uncommon for people to actually see like little people and other things that are not there. It might not even bother the person living with dementia, but it can be quite bothersome to the caregiver because it's, it's scary. Or they might start getting paranoid or start having delusions like, you know, I'm pretty sure you stole my wallet, because I can't find it, right? And of course they can't find it because they don't know where it is, but they will think that somebody stole it, right? So delusions can also be a common behavior, and knowing what these, and then being resistant, like I'm not gonna get in the bathtub anymore, I'm not gonna take a shower, these kind of things, knowing how to navigate them, we often don't guide people. Happily, there are ways to navigate these kind of behaviors, but it's useful to know kind of what the tips are, what the clues are, and a lot of times we don't provide that adequately to caregivers. Safety, you know, you heard from Mike, it's pretty much the norm that people will get lost when they start developing dementia. And so having a game plan, you know, do I have a way to make sure that my loved one doesn't elope from the house? I remember when my father eloped from the house, scared the heck out of me. And we got locks that were down low so he couldn't notice them, so that he would be safe from eloping from the house. There are little tips, things that you can do, wearing a life alert, you know, having Actually, I tell everybody, get somebody on your phone that actually knows where you are on your phone, you know, on Apple. It's called Find My Friend. But I think the more people actually help, we can help each other if we know, oh, why isn't, you know, my uncle home yet, I look and find my friends and he's like nowhere where he should be, then I can go check on him, right? So actually there are more and more technological tools that we can use to help people from a safety perspective. But safety becomes a big thing. People can forget and leave their stove on, right? They can leave stuff in the oven. lots of safety issues that can bubble up that are sometimes a little subtle and then the biggest one and most neurologists will tell us that this is actually the biggest challenge in talking with people is driving. No one likes to be told it's not a good time for you to drive anymore. No one. That was one of the hardest things for me was taking away my father's keys. and he was not happy, not happy. So driving, but that becomes an issue, becomes a liability issue, right? If it becomes unsafe for us, for someone with dementia to drive, and then they get into an accident, then we could potentially be held at fault if we knew they had dementia, right? So it's important to have these conversations up front, and to try to think about having them in as gentle, kind, and supportive ways possible, and then having alternative strategies. You know, fortunately now we have, you know, ways that people can get around that's not just dependent on having my own car. I don't have a car. I'm happy for the bus system and the T here, but, you know, there are ways for us to get around even when we have cognitive impairment and trying to give people a sense of of solace around the fact that they are not being taken, their independence is being taken away. And then you heard from Mike, so I'm not going to talk about this that much, which is about planning for the future. So when we think about planning for the future, it's a lot of stuff, right? It's like, is this house going to work anymore? Like maybe there are a bunch of steps, and that's going to become a problem. Maybe this house is not going to work anymore. Maybe I need to look for a place where it's all one story, and the person doesn't have to go up steps. Or is it going to work actually from my own well-being for this person to live with me all the way to the end of their life? I may not be able to care for them. I may need to be able to bring caregivers in, or I may need to think about some other living opportunity for them. These are things that are worth planning for. Mike already talked about a power of attorney, crazy important, making sure that someone is actually a power of attorney for our legal affairs, our financial affairs, and our health care affairs. And many, many people don't think about that, but it's actually all of us would benefit from it. I was just thinking, I was on a call recently with my daughter. I said to my daughter, have you decided on a health care proxy and do you have an advanced directive? She's 30. But the thing is, she needs to decide. Who's going to be that decision maker? She gets run over by a bus tomorrow, right? So all of us need that. But it becomes really important as we develop dementia that we have someone we trust who we are actually allocating those services to. And if you haven't looked this up, I would really encourage you to look at the website called prepare for your care, all one word, prepareforyourcare.org. They actually have a special, so they have advanced directives so you can actually say like I want this person to be my decision maker if I get hit by a bus or something like that. But then they also have things like, How much do you want this person to make decisions for you? What are the sort of things you don't want them to make decisions for you about? And then there's a whole section for people who are living with dementia and who are care partners for living with dementia. The other cool thing about it is it doesn't matter what state of the country you're in, you can click on it and any state will pop up. So when I moved to Massachusetts, I printed out the Massachusetts Advance Directive, filled it out, got with my kids, said, here's what's up. And you can do that with that if you have, again, somebody who you know, or you're living with dementia, that you make sure that someone you trust is going to be that decision maker for you. All right. So planning for the future. Remember I was talking about planning. This is really what I was getting at. And a colleague of mine calls it the six Ds. I think they had to work a little hard at it, because who calls housing domicile? But anyway. But domicile means housing. So is where I am right now going to work for me over the long haul? It's worth asking this question because it gets crazy hard to do it when it's a crisis. So it's much better to think about doing it when it's not. We talked about driving. We talked about decision making. A couple other things to think about is what about my financial situation? How am I going to navigate this future? How can I actually get help? Go to people I trust, you know, a lot of our senior centers and this Medford Community Center have resources to help us think through like how to get support. And we're lucky in Massachusetts we have a lot more support than some other places. And then what about drugs? You know, I don't know about you, but I often see people who I would say they collect medications over the years. Right? So somebody gives them some medicine. They got that one. And someone else gives them another medicine. They got one. And they're like, next thing you know, they're like 10 to 12 medicines. And the question is, do I still need all of these? And often the answer is no. So that's another thing to advocate for with your doctor is say, do I still need all these medicines? Because I know each one of these drugs are interacting with each other. And I might feel a heck of a lot, and I've seen many people, they feel so much better when they got off those medicines that they didn't need anyway, and actually are no longer having to interact with other medicines or with their food. So think about your drugs, and think about how to make sure that you're only on the ones that you need to be on and not on a whole bunch that we tend to collect over time. And then finally, This is an illness that will ultimately lead to the end of our life and to our death. So how do we plan for that? How do we actually plan for that now so that it is a peaceful journey as possible? How do we make sure that what we want is, again, what we get? That really requires talking to other people. So a lot of times, we don't like to go there when we, you know, well, I'll go there, talk about dying, you know. But actually, it's good to go there, to actually think about how I can make sure that I'm getting what I want. near when I get when the end is near because if I don't talk to people about it they're going to guess and that's not going to feel good to them and it likely is they're going to not necessarily guess right so that's also worth thinking about so if we move on These are the common symptoms that I was talking about before that we commonly see. And there's a lot of different strategies to actually address these symptoms and the stress associated with them. You're going to hear about two studies in just a minute that are studies that are trying to help us figure out the best way to support these kind of messages. And then if you go to the next slide. This is really what I talk about when I'm talking to caregivers and care partners. And actually, Mike, you said it so beautifully. And that is that oftentimes, when someone is developing dementia, they're not going to remember stuff the way it was you remember it. And they actually may even be in a different reality. But they often will say things. And rather than correcting them and making them feel judged, we can just go along. And we can just love them. And remember that it's the tone of our words more than the content of our words. My mother-in-law also had dementia. And when we'd go visit her, basically, she could not figure out who any of us were. But what was important to her was, were we friend or foe? And she could tell if we were friend or foe, depending on our behavior and how we sort of behaved with her. And so really paying attention to being unthreatening, non-threatening, gentle, and being much more just going along with whatever their reality is as opposed to what, like, no mom, it wasn't that, you know, that won't help. And so really paying attention to that I think is really important. So if we move on. This is probably the most important thing I'd just like to suggest to you. And it's so awesome that everybody is here in community together. Please don't go it alone. It's very easy, and we're seeing this in research studies that we're doing right now, that people who are caregivers of people living with dementia can become so isolated. Because what happens is sometimes the neighbors or the friends, they actually don't know how to navigate someone who's living with dementia. And so because of their own discomfort about that, they start backing away. And that backing away doesn't just affect that person with dementia, it affects the care partner with dementia. And that care partner can become isolated. So do not go it alone. Helen Keller said, alone we can do so little, together we can do so much. I deeply believe that. Next. These are some helpful resources. I'm going to just show you a couple slides of helpful resources. This book on the left is written by a colleague of ours, and it's specifically helpful if you're a child of somebody living with dementia. It's sort of written for an adult child of someone with dementia. It's good for anybody, but it's particularly helpful that way. Then if you look over here at the top, the Alzheimer's Association has a bunch of great stuff. The National Caregiver Alliance and the Dementia Care Collaborative are all places where you can go to get additional support. If you go to the next slide, You heard Mike talk about MAGIC, what we call MAGIC, which is the Massachusetts Alzheimer's Disease Research Center. We have a bunch of things which we call our Roadmap Series, which provides a ton of jam-packed information about a number of different sort of topics that are relevant to dementia. And this one is called the Roadmap to Caregiving. It has a bunch of stuff. You can either look at it online or you can just print it out, download it. It's there for the taking. And then if you go next, These are two research studies that we have ongoing right now that we would love for you to become involved in. One is called the Social Study, and Sahana is going to tell you about that in a minute. And the other is a study to assess an app that helps with mindfulness-guided imagery and support techniques to improve mood for dementia caregivers. And I don't know, Dr. Ramirez-Gomez, are you game for talking about that one? Awesome. OK. Sahana come on up.
[Sahana]: Hi everyone. My name is Sahana. I'm a clinical research coordinator. I work with Christine and I'm going to talk a little bit about the social study. I'll keep it brief because it's getting kind of late. So the social study stands for supporting our caregivers in ADR D learning. What ADRD is, is Alzheimer's disease and related dementias. So we're really looking for unpaid caregivers of people living with dementia, and looking to see how a six-week program can support them, reduce their stress, and improve their well-being overall. It's only six weeks, and each session is 60 minutes. It's fully virtual, so you can do it from anywhere, your phone, tablet, anything like that. And yeah. So if you're interested, please feel free to talk to me after this. And we also have flyers located on the left side of the blue table up here. Thank you.
[Ramirez-Gomez]: And I know you have been sitting now for a long time, so I'll be very short, but I want to highlight again and provide an invitation to all of you, because each of you count, like your friends, your neighbors, your community. You are important for us, and we want everybody to be included. I have said it again and I will keep saying it. I work a lot, for example, with my Latino community. All of you are our community, so we want to invite you to participate. Basically, there is a lot of information, flyers, opportunities that you have. But I want you to know that not only you count, but we also want to help, because that's the goal of research. We are not just collecting information for the sake of it. We want to make a difference. And that, we are going to achieve that by, of course, understanding better what's happening in these different communities. How are we different from all those numbers that we heard today? Why is a risk higher? What's happening here? Then how can we lower that risk and make things better for each one of us? So I, of course, I work a lot with the caregivers, with the patients, with healthy, with everybody. So I invite you to consider joining us in this effort because we want to count everybody on this journey.
[SPEAKER_05]: OK, so we actually have something interesting. We have one of our researchers who we're going to try and do this virtually. Key word in that phrase is try. Dr. Seth Gale is going to be talking about a study that we have. It's called the AHEAD Study. And the cool thing about the AHEAD Study is that they're looking for people who do not have Alzheimer's. Oh. Because you've got to have a baseline. So I'm not going to steal Seth's thunder. Hopefully, come on. We'll try to figure it out. um see this is why we have and so you know what while we're trying to figure out this out i've got a special guest appearance tonight everybody i mentioned him earlier so let me do this tony come on up man this is This is my friend and colleague, Dr. Tony Pham, who's been working on chronic pain in African-Americans. And he started up some workshop series. So like I said, I'm not stealing your thunder. Jump in here.
[SPEAKER_06]: I just swallowed some gum. Thank you for that. I just would like to get a moment to have a round of applause for this community center. I'll keep it brief, but I really do appreciate these spaces because I feel they're so important for the wellness of the community. And as you've seen, there's a lot of creative efforts that are underway to meet the unmet needs of different ethno-racial populations, different disorders, different illnesses. And so I'm part of a group at Mass General with Mr. Mike Kincaid, Noman, Mary back there, and we're actually looking to bring evidence-based interventions into the community setting by way of making interventions deliverable by people in the community for the community. at a price that's not inexorbitantly expensive, in a way that is culturally accessible. And so our study, among several to be mentioned here, is looking to culturally adapt a mind-body intervention for older black Americans who have early cognitive decline and chronic pain. And that's an interesting thing to take into account because folks with chronic pain are two times more likely to have early cognitive decline, as we call it, and the two work to make each other worse. So it's very important to target all the things associated with aging concerns, such as early cognitive decline. And to do this, we're building a community advisory board, essentially bringing together experts from the community with lived experience who identify as older black Americans, who identify as having chronic pain and having early cognitive decline. to essentially give their input so that we can create this intervention for delivery in the community. Because essentially, like others have mentioned, insurance rates are so high sometimes. Health care is very inaccessible at times. So it's important to figure out creative ways to get care for those who need it.
[SPEAKER_05]: Here's a shameless plug. Hopefully you'll be seeing Tony again. I mean, as I shared, I love this community health center. I mean, I've got to be honest, when I got here, I was like, I've been here before. But it has been so long ago. And yeah, if invited, that's a shameless plug, we would love to come back. All right, are we ready? Hello? OK, Seth. Can you hear me? We can hear you. So ladies and gentlemen, this is Dr. Seth Gale, who, Seth, you're going to take us home, OK? You're the last speaker tonight. All right.
[Seth Gale]: Very good. I want to make sure you can hear me, though. Can you? Yes. All right. This has been a great discussion. I'm sorry that I can't be there in person. I've been listening to all of it. You guys have wonderful questions. Thank you, everyone, for coming tonight. So I'm Dr. Gale, Seth Gale. Ramirez Gomez was talking about her role at Mass General. So I have a similar role. I'm a neurologist at Brigham and Women's, and we work really closely together on a number of things, including research studies and also care, taking care of patients. There's been a couple of themes I want to pick up on, and I want to talk about mainly a study. That's the main thing I want to get to. But we've talked about detecting Alzheimer's early. That's been a big theme in this discussion, from Mike's original conversation, from someone in the audience who talked about having a PET scan done with recognizing symptoms early. All of this is geared towards trying to figure out what to do if you identify changes in the brain for someone that is early Alzheimer's disease, really early, even before you have symptoms. So what do you do about that? And I mean, like a lot of conditions, you know, you think about diabetes or heart disease, the goal, right, is to identify changes early so you can try to intervene and to do something about it. So take diabetes, we all want to know when sugar starts to change in a way before it starts to give neuropathy and before it starts to affect vision and that sort of thing. So the brain is no different in that way. The idea is to try to detect these changes early. So It's not clear, though, what to do at that point, right? You can advise all of the healthy lifestyle things that are really important, and I don't want to minimize at all things like exercise and having a healthy diet and having positive social interactions and reducing stress and getting good sleep and these things. But it's not clear exactly what else can be done. So there's a study that we're doing. The Brigham is one site for this study of about 85 or 90 worldwide, actually. That's called the AHEAD Study, like step ahead or jump ahead. And this study is for people who are age 55 to 80, who don't have any memory difficulty. They could be worried about memory.
[WKpjKFdpTFg_SPEAKER_15]: People are laughing because some of them are older than 80. Older than 80.
[Seth Gale]: They don't qualify for the study. Fair enough. Fair enough. But they may know some youngins. OK. We have a bunch of studies. So actually, I want to check one thing before because the age limits are slightly different. Yes, so I was right. So it is 55 to 80. So we have a bunch of studies that go to age 85. But the idea of this study is you have to be age 55 to 80. You come in for a visit, and you have a basic memory test done. And you can be worried about having memory difficulty. That's okay, but you don't have to even be worried. You can just be someone who's living your life and it's important for you to, you know, figure out a way to give back or participate in research and maybe you have a family history. Those are all possibilities. And you have a basic memory test done. And then there's a blood test that's done. And that blood test has these tests for these kind of fragments in the blood, which the brain is giving off, that can predict whether there are Alzheimer's changes going on in the brain from the blood test. So this is a really neat, this is a really neat fairly new technology advancement to be able to detect that. So if you have this blood test, and the blood test indicates that if you were to look at the brain in a scan, if you were to go into a scanner and look at the brain, then you would have these plaques we've been talking about, these amyloid plaques. And so that's the first step of the study. an abnormal blood test, which would correlate with having plaques in the brain. And if that's the case, if it's positive, the test, then you come in to have the imaging test, which is called a PET scan, which we were talking a little bit about earlier in the discussion, to confirm that. To confirm that you're cognitively normal, so your memory and your thinking is normal for age, But you have these early signs and we call that's kind of like having the condition Alzheimer's, but before you have symptoms right so you don't all the things that Mike and others have talked about related to, you know, having confusion or forgetting things that that's not happening yet for you. But you find all of this out, by the way, in these first two visits that I just described in this study. And then what happens then is if you have these plaques on the brain imaging test, which is called a PET scan, then you're enrolled in a study, which is a four-year study, that's looking at a medication called Lecanumab or Lekembe. And this is a medication that you may have I don't know if I'm getting feedback, but this is a medication that we just started to use, as Dr. Ramirez-Gomez talked about, for patients with early Alzheimer's disease. Because it went through all the studies and it was approved by the FDA for use, but what we don't know is if this medication can be helpful for people who do not yet have symptoms, but they have the same brain changes that we see a little bit later on. So it's really like early intervention, early, early changes. To go back to one of the points that Mike made about participation, which is that we just don't know if there aren't, we don't know differential effects in different populations if there isn't participation from different populations. That includes Black population. I know that this series is focused on Black health. It includes Pacific or Islander populations. It includes Hispanic Americans. It includes everyone across racial and ethnic lines and sex lines as well, men and women. And as Mike was alluding to, you know, research will go on and the idea is to maximize knowledge that so that results of a study like the one I'm describing can be applied in a way to everyone. And if there isn't fair and equal participation and representation that represents the population in the United States, then we're not going to know what needs to be changed about treatment or about research in order to answer those questions. So that's my brief summary of a of a big study that we're inviting people to come and participate in. And I'm happy to answer any questions about it or to go into more detail about it. I think, Mike, it makes sense to open up to questions like for the last kind of 10, 15 minutes here.
[SPEAKER_05]: So do we have any? Go ahead. This is early in your presentation. Well, let me let me let me. Seth, can you hear her? Yes. OK, go ahead.
[SPEAKER_11]: I got in your earlier presentation about PET scans. The PET scan that you were talking about, when you get the PET scan, does that determine what type of Alzheimer's, dementia that you may have?
[Seth Gale]: So that's a good question.
[SPEAKER_05]: So in the doctor's office- So Seth, real quick, for the folks at home, the question was, the PET scan, does it determine what type of Alzheimer's you have? Or dementia. Or dementia. I'm sorry, what type of dementia you have?
[Seth Gale]: So this particular PET scan I was talking about in the context when you would come in to participate in the AHEAD study I was describing, is looking specifically for Alzheimer's disease. So that's the kind of dementia that is defined by these amyloid plaques. But I think this question gets at, in general, if you have memory or thinking or behavior changes, and you come in to see a doctor like myself or Dr. Ritchie or Dr. Ramirez-Gomez, How do we figure out what kind of dementia it is in order to figure out what is the recommendation and is there a certain medication to use? And there's different pieces of information that can help with that. There is the symptoms themselves. So what exactly is happening? What kind of memory or behavior or thinking change is it? Is it just memory or is it also problem solving or decision-making? does the person also have this kind of sleep difficulty or are there changes with their walking or their gait or their eye movement? So in other words, that's the category of what we call symptoms. So just like any condition, asthma or lung disease, there's a series of symptoms you would present to the doctor with. It's not just I'm having memory difficulty, but we will fine tune and figure that out. The second is a regular scan of the brain. So not a PET scan, but like an MRI scan. And sometimes, not always, but sometimes there's a pattern on that MRI which can correlate with the symptoms that the person has. So you have symptoms, you have an MRI scan, and then you have memory and thinking testing. So not just remember this word and tell it to me two minutes later, but more detailed testing like, can you copy this image? And if I read this paragraph to you, I want you to try to remember these specific facts. So basically performance on memory and thinking tests. And when you combine these three pieces of information, you're building a story of like a diagnosis. Is this Lewy body dementia? Or is this Alzheimer's disease? Or is this frontotemporal dementia and these other kinds of rare dementias? I think that's what that kind of that question is getting at, which is there are tools to use. It is true, just like with a stroke, that the definitive diagnosis, the 100% diagnosis is like what you look at with a biopsy, which we don't do for the brain typically, or you look after death. That is the 100% definitive diagnosis. But it doesn't stop us from being almost there. With all these tools I described, especially with these markers, we're 95, 97% there. And that's the same thing we do with all diseases, with pneumonia, Tuberculosis, we have biomarkers, we have blood tests, and so we're getting much, much better at figuring it out. But I think it's important to distinguish the fact that we can have actionable information, like treating someone with an Alzheimer's medication based on that information, without having the brain after death, like an autopsy. You don't need that to have an actionable treatment.
[SPEAKER_05]: Okay, I've got a question here. I'll repeat the question, go ahead, because the microphone won't reach there. We will get the microphone to you. Excuse me, pardon me, coming through.
[SPEAKER_15]: I have a... What is it called?
[o9F0qYH9Geo_SPEAKER_05]: Aphasia?
[SPEAKER_15]: When I was little, going on third grade, when I come out of school and I go home, I fell asleep and wake up. Every... I had... So is it a question about sleeping?
[SPEAKER_05]: Take your time.
[SPEAKER_15]: I had a... Here and there and there. Older. Older brothers and sisters. No. Okay. Older. And I went to school. I'm 80. Over and over and over. Yes. Anyway, 80. I'm 80.
[SPEAKER_05]: You're young enough to be in the study.
[SPEAKER_15]: Yeah, yeah, yeah. Um, uh, um, uh, uh, uh, uh, uh, uh, I, uh,
[SPEAKER_05]: It's okay. It's okay. You know what? I'm going to stick around afterwards, so if you want, just grab me and we'll talk. Okay? It's okay. All right. So. Oh, did I? Yeah. Did I have another question? Oh, yeah, I did. Okay. Because it ain't getting back there. Go ahead. What's the question?
[SPEAKER_00]: What can someone do at a younger age to try and lessen the chance of getting dementia if that's even possible?
[SPEAKER_05]: So Seth, the question for the folks at home watching this in the comfort of their home, the question is, are there other risk factors besides age, and is there anything that someone can do preventative to try and keep from getting Alzheimer's or at least delaying it?
[Seth Gale]: Yeah, there are definitely. I'm happy to take a stab at it too. I also know that Dr. Ramirez-Gomez is there too. I don't want the Q&A just to be about what I'm saying, what I started with my study. Let me start and others can add. So there are a lot of modifiable risk factors, that is things that you can do from middle age and even earlier on to reduce your risk of dementia. And this includes some of the things we've talked about. So things like getting regular physical activity and aerobic exercise, maintaining a diet that is close to like what we think about as what we might call like the Mediterranean style diet or a diet that has low amounts of saturated fats and processed sugar. We know that for those in middle to older age that hearing difficulty when untreated is itself an independent risk factor to either hasten the onset of memory impairment or to kind of lead or be a risk factor for dementia. So getting hearing aids and making sure that hearing is tested is something that can be done later. These are just some of the things that we know. And we know this information from when you study people in these long-term aging studies from, say, you know, 40s, 50s. I wish we could go earlier and have more, you know, even earlier. You can interview people and really get detailed information about what kinds of lifestyle behaviors they're doing, what region, where they live.
[SPEAKER_05]: Seth, Seth, only reason why I'm getting ready to cut you off is because somebody, I'm not mentioning any names, Sophie, forgot to charge their laptop. Oh, we're about to lose you. The battery thing just popped up. But let me say this, because we're also just about at time. First of all, I want to say thank you all for coming. I've enjoyed this. And I've already chatted with Lisa. We're coming back. I love a cliffhanger. We're going to come back. And what we'll do is instead of me bringing a gazillion doctors, why don't we do like one at a time or two at a time and we can just talk. All right, so on behalf of the Massachusetts Alzheimer's Disease Research Center, I want to say thank you for coming out on a Wednesday night. It is literally 8 o'clock. Go ahead. Liliana, did you get her to ask that question? We can do this in Spanish. We can do this in English. And if we can find somebody to translate in another language, we can do it there. That's my way of saying, yes, we can. So having said that, Sophie, take us home.
[WKpjKFdpTFg_SPEAKER_15]: I think Mike said it already. Thank you, everyone, for coming out. I think I learned a lot through the first time I reached out to Mike. Up until now, thank you, Dr. Gayle. Thank you, Dr. Ritchie, Dr. Ramirez-Gomez, and everyone else. Tony, Dr. Sahara, thank you for coming out. And our next series will be on Black maternal health next month. And yeah, we're out of time. So I did charge my computer, but we're using the OWL. That's why I had to plug in the same port. But thank you, everyone, and have a good night.