[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]: Mèsi anpil.
[SPEAKER_05]: Se konsa, kesyon an te, ki jan ou ankouraje moun yo defann pou tèt yo ak manm fanmi yo? Epi li enteresan, paske mwen te gen Dr Tony Farm isit la, men mwen pa pral rele l 'leve, paske ki ta anbarase l'. Mwen pral fè yon sèl bagay pi byen. Christine, ki jan ou ta reponn kesyon an sou ki jan yo ka defann moun pou tèt yo? Men, si ou vle, mwen ka pran mikwofòn la, oswa ou ka vini. Sa a se yon preview fofile, paske sa a se Dr Christine Ritchie, ki moun ki pral pale pita.
[Christine Ritchie]: Se konsa, mèsi pou kesyon an ak oke jwenn pi pre. Se konsa, sa a se trè enpòtan epi li difisil paske anpil nan nou sòt de panse ke oh li nan yon figi otorite oswa yon moun mwen bezwen jis pou defere ak montre respè tout sa ki, men sa a se kò ou. Epi ou konnen kò ou pi bon an, ak moun ki konnen ou konnen tou kò ou pi bon an, e konsa si ou santi ou tankou li pa, tankou moun nan pa koute ou, oswa yo ap aktyèlman pa peye atansyon, Lè sa a, tanpri kanpe pou tèt ou. Tanpri di, mwen ta renmen yon dezyèm opinyon, oswa ou ta ka refere m 'nan yon espesyalis, oswa ou ka reponn kesyon sa yo? Pa soufri an silans. Apre sa, mwen panse ke yon anpil nan moun ki soufri an silans. Lè sa a, yo ale lakay yo epi yo ap tankou, ugh. Se konsa, lè ki santi kòmanse vini, kòmanse poze kesyon tankou, mwen enkyete w sou sa. Èske ou ka ede m 'konprann sa a? Men, si ou pa ap resevwa repons satisfezan, Lè sa a, di, mwen ta ka aktyèlman gen yon dezyèm opinyon? Èske ou ta ka refere m 'bay yon lòt moun?
[SPEAKER_05]: Tout dwa. Mèsi. Vini. Ou pa bezwen pè. Mwen vle di, vini sou. Mwen konnen mwen pa sèl moun ki te wè moun yo pèdi lespri yo paske Fries franse yo te frèt nan McDonald's, men yo pral mache soti nan biwo doktè a pral, mwen pa gen okenn lide ki sa ki jis rive. Vini. Dwe aktif. Ou se fanmi ou, moun ou renmen yo, nimewo yon sèl. Apre sa, mwen repete sa li te di. Ou se aktivis nimewo yo. Si ou pa fè li, pa gen yon lòt moun ki pral fè li pou yo. Tout dwa, kite a ale nan pwochen an. Ale pi devan. Mwen pral dirije ou tounen. Se konsa, kesyon an, e si pasyan an se nan refi, oswa si doktè a se tankou, non, ou bon. Pa enkyete sou li.
[Christine Ritchie]: Yeah, se konsa swa fason, dwa? Se konsa, swa doktè a pa sòt de rekonèt pwoblèm nan, oswa petèt ou se patnè a swen, ak moun ki nan aktyèlman ki gen demans se nan refi. Se konsa, malerezman ak demans, li pa ki estraòdinè pou moun yo pa gen insight nan maladi yo. Se konsa, yo ka panse yo ap amann. Lè sa a se difisil, dwa? Ak sa a se poukisa byen bonè nan li a vo kenbe yon bon relasyon ak moun sa a ak fè yo pou pèmèt ou yo dwe yon pòtpawòl pou yo, yo ka resevwa yo siyen, ou konnen, sa a egzansyon HIPAA epi di, wi, mwen ka pale ak ou. Nan fason sa a ou pale ak doktè a epi di, kite m 'di ou sa mwen obsève. Epi sa a trè enpòtan. Ak pi, ou konnen, klinisyen yo fou rekonesan. Pou jwenn yon pèspektiv diferan paske yo konnen ke yon anpil nan jan ki ap viv ak demans pa aktyèlman, yo pa okouran oswa yo pa gen insight nan aktyèlman sa k ap pase sou oswa yo ap trè pè ak yo ap pè pou sa ki pral rive. Men, swa fason, sa a, se kote relasyon an ak bilding ki konfyans ak ba yo opòtinite pou yo ki pèmèt ou yo dwe pòtpawòl yo epi yo siyen yon dispans pou sa, Lè sa a, doktè sa a ka pale avèk ou.
[SPEAKER_05]: Yeah. Yon lòt bagay mwen vle piggyback. Jwenn èd. Avèk manman mwen, ou konnen, mwen se nèg la move. Pi gran frè mwen an se bon nèg la. Nou te gen jandam la bon, move bagay jandam desann nan, ou konnen, manman, ou konnen, ou te fè sa. Si ou pa fè sa, nou pral oblije ale fè sa. Lè nou konsidere ke li vire toutotou ak ale, kounye a, manman, ou reyèlman konnen ou pa vle Mike fè bla, bla, bla. Apre sa, mwen tankou, mwen pa ka kwè, men li travay. Epi li fè lavi anpil pi fasil. Ale pi devan nan do a. Se konsa, kesyon an se, ki gen la yon laj mwayèn yo kòmanse kap chèche sa yo siy avètisman? Se konsa, sa a, se yon kesyon de-pati. Premye pati a se ke li pa estraòdinè pou yon moun kòmanse montre sentòm nan 60s yo. Men, sonje sa mwen te di. Ou pa pral remake sa. Ok? Koulye a, gen nan yon ti pousantaj nan moun ki jwenn sa nou rele kòmansman byen bonè nan Alzheimer. Moun sa yo se jan ki jwenn li nan yon laj pi piti. Apre sa, mwen vle di, mwen te wè etid sou moun ki nan 40s yo, 40s byen bonè. Koulye a, kite m 'di sa a. Pou tout moun nan sal sa a kounye a mande, ta ka sa yo? Ou pa ta dwe mande, ou ta deja konnen. Paske pou yon bagay tankou sa, premye nan tout, li gen tandans kouri plis agresif nan yon fanmi. Mwen vle di, ane de sa mwen te konn travay pou asosyasyon alzayme a, e mwen te rankontre manman ki te pran swen pitit yo. Yo se granmoun, pitit gason ak pitit fi. Se konsa, pwen mwen se ou pa ta dwe chita nan sal sa a mande si ou anfòm kategori sa a. Ou ta deja konnen li. Epi sa a yo rele bonè kòmansman maladi alzayme a. Ankò, yon lòt rezon ki fè li enpòtan pou fè tès la. Mwen te gen yon kesyon tout wout la nan do a. Ou jete men ou. Èske nou reponn li? Ok, Christine, ou pa bezwen vini pou yon sèl sa a. Mwen te resevwa sa. Mwen te resevwa sa. Se konsa, kesyon an te, se ou menm ak doktè ou pa dakò. Epi w ap chèche pou yon lòt kalite swen ke doktè ou sanble ap downplaying. Se lè ou ale jwenn yon dezyèm opinyon. Ou jis tou senpleman ale jwenn yon dezyèm opinyon. E santiman pèsonn pa blese. Epi se yon bagay mwen swete moun ta konprann. Ale ale wè yon lòt doktè paske ou pa dakò ak doktè swen primè ou, lavi ale sou pou yo. Santiman pa gen moun ki pral blese. Li pa tankou yo pral nan dife ou demen oswa anile ou kòm yon pasyan. Ou jis vle yon referans. Sa a tout. Li rive. Ann ale. Se konsa, sa ou fè apre ou te fè tès? Ou te fè moun ou renmen yo teste. Ou te vinn rezilta yo. Li nan alzayme a, li nan modere defisyans mantal, li nan kò Lewy, li nan youn nan sa yo, ou kounye a konnen ekzakteman ki sa ki mal. Kisa ou fè pwochen? Ou aprann tout sa ou kapab sou maladi sa a kòm moun kap bay swen an. Ou dwe vin ekspè sou maladi sa a. Esansyèlman tou pou ke lè w ap chita, epi kòm Christine te di, ou vle jwenn fòm yo HIPAA, ou vle vin prokurasyon swen sante a, ou vle jwenn gadyen legal. Alzheimer a se yon maladi pa nan si, li nan lè. Lè moun sa a pral rive nan pwen sa a kote yo pa kapab fè sèten bagay. Se konsa, ou vle jwenn devan yo nan sa. Apre sa, mwen toujou di moun, anba bagay la gadyen legal, si ou sote sou li nan yon etap pi bonè, li nan tou senpleman jis ap resevwa kèk dokiman siyen, ale devan yon jij, boom, w ap fè nan yon kesyon de, li pa pran ki lontan. Epi li pa vrèman koute anyen. Si ou rete tann oswa fanmi, epi mwen toujou di fanmi an, tout moun bezwen chita epi yo dwe sou menm paj la. Paske mwen te wè moun ale nan tribinal ak goumen sou asyèt. Oke, manman te di mwen te pral jwenn sa yo asyèt. Mwen pa fè sa. Ak sa k ap pase se yo ale jwenn avoka. Ak avoka sa yo ale nan tribinal la. Ak travay la nan avoka yo se fè lòt bò a gade tankou si ou kite Nana ale viv avèk yo, li pral mouri nan yon jou. Ak jij la, ki moun ki pa konnen moun sa a, koute tou de agiman. Epi li pa estraòdinè pou jij sa a nonmen yon lòt avoka kòm gadyen tanporè, ki moun ki pa janm menm te rankontre Nana. Epi reflechi sou li. Agiman sa a ke ou jis tande, byen, kounye a jij la pa ka kite Nana ale lakay ou pou kont li oswa avèk swa youn nan de sa yo, se konsa gadyen legal la gen yo mete Nana nan yon enstitisyon. Ou wè ki kote mwen prale ak sa. Se konsa, li enpòtan so sou sa a pi vit ke posib. Aprann tout sa ou kapab. Pran swen nan tout nan pwoblèm sa yo legal pou ke rès la nan tan an, ou ka jis fè bagay la moun kap bay swen. Epi ou tou, plis ou konnen, mwens ou sezi. Oke, epi ou ka jwenn enfòmasyon sa a, nan chemen an, lè w kontakte ajans lokal sèvis ansyen ou a, oswa vil la nan Medford, ak Sophie, ak ekip la ki nan isit la. Gen yon ekip trè bon. Mwen te gen yon chans pale ak kèk nan yo. Se konsa, gen nan sèvis yo deyò pou ou. Oke, se konsa sa a, se de bagay sa yo isit la. Kesyon an li te mande se, èske gen kalite tès ki ka konnen egzakteman sa moun nan genyen? Osi lwen ke otopsi a, ak sa a se yon bagay ki nenpòt lè ou wè yon dokimantè oswa anyen sou nan alzayme, ou toujou tande pale sou plakèt ak tangles, ki se nòmalman fè apre moun nan te pase lwen epi li te bay sèvo yo nan syans, epi yo fè yon otopsi, epi yo ap chèche pou sèten bagay. Genyen yon etid ki jis dènyèman te soti ki te montre ke ka gen kèk moun ki ka gen bagay sa yo, plakèt sa yo ak tangles, men pa janm jwenn nan alzayme. Men, se konsa mwen jis mete sa yo deyò. Osi lwen ke premye a, ankò, si ou sonje lè nou te pale sou fè tès yo, yo ale nan yon batri nan tès yo. Li se pa yon bagay 15-minit. Mwen te tande nan kèk jan ki te ale tounen, li te pran de jou paske moun nan te fatige nan premye jou a epi yo te tounen vin jwenn kontinye tès la. Paske objektif la tout antye se elimine tout nan sa yo diferan kalite maladi nou te wè. Ale pi devan. Sa bon. Amyloid, dwa.
[SPEAKER_12]: Li nan mal. Lè w ap chita la epi w ap chèche nan yon bagay, ou konnen ki sa non an nan li se, men ou pa konnen ki jan fè fas ak li.
[SPEAKER_05]: Oswa ou pa konnen ki sa non an se epi ou panse ou ta ka, sa a, se yon pwoblèm. Se konsa, nan lòt mo, ak mwen pral, paske ou mansyone non ou Julie, ki sa Julie te pataje te se ke sa ki te fè l 'ale fè tès epi di doktè li yon bagay mal te li pa t' kapab refize yon bagay pa t 'mal. Kenbe sou yon dezyèm, Julia. Mwen pral fè ou pi popilè. Kevin, pa rayi m 'pou sa. Nou gen yon flachbak Phil Donahue.
[SPEAKER_12]: Ok. Matant mwen, sè manman m 'te gen li. Ok, sa a amann. Koulye a, ak fanmi mwen, kèlkeswa sa yon sèl bò nan fanmi an gen li, Lòt bò a gen li. Koulye a, yo te dyagnostike papa m 'ak li. Nyès li te dyagnostike ak li. Yon lòt neve te dyagnostike ak li. Mwen di, mwen pral doktè a.
[SPEAKER_05]: Se konsa, Julie, sa w ap di se ke ou, jis tankou mwen te di ak grann mwen, ou te wè li. Ou konnen ki sa yo gade pou. Men, si te di, o, pa enkyete sou li, byen, ou konnen, wi, non, mwen bezwen jwenn m 'yon lòt doktè. Ak mèsi pou pataje sa. Se konsa, kite a ale. Oh, ale pi devan. Ooh. Ou konnen ki sa? Ou se premye moun ki janm poze m kesyon sa a. Christine, sa se yon bon kesyon. Èske gen yon sèten laj? Mèsi.
[Christine Ritchie]: Se konsa, kesyon an se, ki gen la yon laj sèten kote ou ta dwe fè tès? Repons lan se non. Gen aktyèlman yon òganizasyon nasyonal ki sòt de fè rekòmandasyon sou sa ki fè sans pou tès depistaj ak sa ki pa fè sa. Se konsa, repons lan gwo se non, men li la yon men. Paske men se, si ou gen faktè risk, tankou ou dekri, kote ou gen yon istwa fanmi, oswa petèt ou gen yon istwa nan dyabèt ak tansyon wo, kòm Mike te pale sou, epi ou gen lòt bagay ki ka mete ou nan risk ogmante, wi, li apwopriye yo ka resevwa tès depistaj. E an reyalite, pi plis ak plis, nou ap ankouraje moun, kòm Mike te di, espesyalman kounye a kòm nou kòmanse gen tretman ki travay pi byen lè w ap aktyèlman pi bonè nan kou a nan demans, pa an reta, Lè sa a, ou reyèlman gen jwenn tès depistaj ak teste bonè. Se konsa, de pli zan pli nou ap panse sou ki jan nou asire w ke moun ki aktyèlman yo nan pi gwo risk yo aktyèlman ap resevwa tès depistaj. Se konsa, ou pral kòmanse wè kèk chanjman menm, ou konnen, sou ane kap vini an oswa de kote moun yo rekonèt, espesyalman ak tretman sa yo nouvo ki ap vini soti, nou bezwen bay moun opòtinite pou yo fè tès bonè. Li ta ka, men mwen panse ke paske nou gen pi plis ak plis menm tès san, epi ou tande pale sou eskanè a PET, li pral pi fasil aktyèlman evalye moun lè bagay yo pa gade dwat pase sa li te nan tan lontan an. E menm, ki sa ki te li Liliana, ane sa a sot pase yo, menm jan nou panse sou kategori yo ak premye etap nan demans te chanje paske nou gen plis enfòmasyon Soti nan tès san, ki soti nan likid ki soti nan likid epinyè a, ki soti nan sèvo a pase nou itilize yo, ede bay diferansyasyon sou bagay sa yo. Dwa, dwa wi, se konsa se konsa kesyon an se e si asirans ou fè li difisil pou ou pou w jwenn kalite tès ke ou panse ki ka apwopriye? Se konsa, sa a se yon bagay reyèl ak aktyèlman DR. Ramirez Gomez ka pale ak sa a paske li aktyèlman tankou navige kèk nan sa a kounye a men pa ak gwo si ou genyen Faktè risk, ak Lè sa a, ou ekran pozitif, se sa ki, gen bagay sa yo soti nan tès memwa ou ak petèt lòt bagay ki sijere ke ou aktyèlman yo nan risk trè wo pou demans ak nou ap espesifikman enkyete w sou diferans ant diferan kalite demans oswa yo te konsidere pou tretman, sa a, se lè konpayi yo asirans yo pi plis chans pou peye pou li. Sa yo te di, gen kèk konpayi asirans yo, yo ap toujou yon trè wo franchiz, dwa? Se konsa, yo ta ka peye yon bagay mil, men yo pa peye tout nan li. Se konsa, li vo poze kesyon sa yo sou fen a devan ak asire w ke ou ka ale nan li san yo pa vini soti ak yon bòdwo ak pral, rete tann, ki sa ki nan sa a? Dr Ramirez-Gomez, ou vle ajoute anyen? Oke. Tout dwa.
[o9F0qYH9Geo_SPEAKER_05]: Dwa.
[Christine Ritchie]: Dwa. Dwa. Se konsa, ou tande Mike pale sou defisyans mantal modere, e ke se kote moun yo ap kòmanse gen pwoblèm ak panse yo anvan yo ap aktyèlman nan pwen kote yo ap gen pwoblèm pou jwenn bagay fè, kote li pa entèfere nesesèman ak kapasite yo nan peye bòdwo yo oswa bagay sa yo tankou sa. Sa se fenèt la nan tan, ak lè moun yo jis byen bonè nan demans yo, lè yo ap pi apwopriye pou aktyèlman ap resevwa kèk nan sa yo terapi plus ki te jis soti nan ane ki sot pase a oswa konsa. Ak rezon ki fè mwen kontinye pale sou Dr Ramirez-Gomez se paske li aktyèlman kouri sant tretman nou an nan MGH ki nan aktyèlman bay sa yo kalite terapi, ki se poukisa mwen te vle jwenn li patisipe.
[Ramirez-Gomez]: Hi, bonswa, ak di ou mèsi pou yo te isit la. Se konsa, jan ou tande, mwen se yon newològ. Mwen se yon doktè ki pran swen pasyan yo nan klinik mwen an ak nan lopital la, nan Massachusetts Jeneral Lopital, ki prezante tankou sa ak enkyetid sou memwa yo, oswa poukisa mwen bliye bagay sa yo, oswa ki gen difikilte rekonèt sèten bagay. Epi se travay nou an. Se konsa, aktyèlman, nou gen opòtinite sa yo pou koute ak peye atansyon ak fè travay la ki Mike te di. Ou konnen, ou ale nan kote sa a epi ou gen tout enkyetid yo tande, epi nou aktyèlman pran yon istwa trè bon ak yon evalyasyon detaye. Nou gade pou tout sa yo drapo wouj, epi li se vre. Mwen byen kontan ke ou te pote moute eskanè a PET ak Dr Ritchie mansyone sou tès san ak bagay ki ka vini nan tan kap vini an trè pre, paske nou reyèlman peye atansyon a sa a, paske kounye a nou gen tretman ki disponib ki pi itil lè nou sèvi ak yo byen bonè. Se vre ke nou gen tout disponiblite sa a fè tès, ak anpil fwa, kòm doktè, mwen tande pale sou defans. Ou menm, kòm yon pasyan, li di, mwen bezwen tès sa a, oswa mwen gen enkyetid sa a. Nou doktè defann, tou, e se sa nou fè lè nou kwè yon bagay te rive. Anpil fwa nou menm gen pou pale ak asirans oswa voye lèt oswa apèl ak pale sou non ou paske nou reyèlman panse sa a se nesesè ak sa a ki pral fè yon diferans nan lavi a nan yon moun paske nou bay yon dyagnostik espesifik. Yon moun mande si nou ka konnen pou asire w ki kalite demans li ye, ak repons lan se wi. Wi, nou ka jwenn nan nivo sa a nan detay. Epi tou kesyon ou an, lè ou di poukisa enpòtan pou nou patisipe si petèt anvan te gen tout difikilte sa yo epi li pa benefisye nou, poukisa li enpòtan kounye a? Poutèt sa, paske nou vle tretman yo pou benefisye tout moun. E nou vle asire w ke diferans ki genyen nou gen nan nimewo yo ki Mike pataje, Moun sa yo ki nimewo gen pwoblèm paske nou bezwen konprann ki sa ki diferans lan, epi, pou egzanp, ki jan tretman yo pral afekte chak nan nou nan yon fason diferan. Se konsa, nou gen reyèlman klinik nan ki nou evalye moun ki gen koulè. Pou egzanp, nou evalye moun ki pale lang diferan. E nou vle reyèlman enkli tout moun. Se konsa, sa a, se mo a ki Mike te lè l sèvi avèk nan kòmansman an ak jwèt la F.
[Christine Ritchie]: Dr Ramirez-Gomez te pale sou ki jan li enpòtan yo aktyèlman chèche atansyon ak yon lòt kalite apwòch degize enteresan nan direksyon pou jwenn ki kalite èd enteresan ke ou ta ka vle se sèvi kòm volontè yo dwe patisipe nan yon etid. Ki sa nou konnen sou patisipe nan etid rechèch sa yo ki gen rapò ak demans se ke nimewo yon sèl, anpil moun aktyèlman ap ede nou jwenn repons lan nan kèk nan medikaman sa yo plus. Men, kèlkeswa, ou jwenn yon evalyasyon trè konplè. Yon evalyasyon trè konplè. Se konsa, ou aprann anpil nan pwosesis la. Lè sa a, lòt la kole se ke Lè sa a, ou jwenn yo konnen moun. Yo konnen ou, ou konnen yo, gen nan yon relasyon la, epi si bagay yo vini, ou se pi plis chans gen yon moun, menm jan yon pati nan ekip la rechèch, ki moun ki nan tankou defann pou ou. Se konsa, li nan yon kalite bagay ki enteresan yo reflechi sou, epi nou konnen sa a aktyèlman soti nan etid gwo, ke lè ou gen moun ki aktyèlman patisipe nan rechèch ak konpare yo ak moun ki jis tankou yo, ki moun ki pa fè sa, Moun ki patisipe nan rechèch fè pi byen. Epi nou tankou, poukisa se sa? Epi li pwobableman paske nan lòt bagay sa yo. Yo ap resevwa evalyasyon pi konplè. Yon moun kap soti pou yo. Yo te devlope yon sans de relasyon ak koneksyon. Se konsa, sa a, se yon lòt sòt enteresan nan apwòch degize tou ap resevwa sipò. E gen yon kantite etid ke nou gen disponib. Ou tande Mike di sou 42 etid ke nou genyen. Yo se pa tout pou menm bagay la, men nou gen etid pou moun ki pa gen okenn pwoblèm ak panse yo oswa memwa yo. Nou gen moun ki gen sa nou rele plent subjectif. Sa se lè yo fè tès, li sanble oke, men yo konnen yon bagay pa bon. Lè sa a, nou gen etid aktyèl pou moun ki gen defisyans mantal modere ak demans, spectre an antye. Nou vle sipòte ou si sa a nan enterè ou, kidonk, tanpri rive jwenn nou sou sa. Dr Ramirez-Gomez, ou vle ajoute anyen?
[Ramirez-Gomez]: Wi, mèsi. Oke, kounye a ke nou ap pale sou sa a ak poukisa rechèch ak patisipe ak ap resevwa konfòtab ak kominote medikal la, li la paske nou pran swen. Tankou reyèlman, jenerasyon yo plus ak ki jan nou ap resevwa ansanm ak ki jan bagay yo ap chanje, tout nan sa ki vre. Apre sa, mwen vle pataje tou ke lè nou pran swen youn ak lòt, kòm Mike mansyone, nou pran swen pou vwazen nou an, pou manm fanmi nou yo. Nou gen mo sa a pou yo te yon moun kap bay swen, yon patnè swen. Nou menm tou nou vle envite kèk nan ou ki ka pran swen pou zanmi, fanmi. Nou menm tou nou gen etid nan ki nou vle bay resous yo. Pou moun kap bay swen, patnè swen, epi li se yon envitasyon, tou, ke nou konnen maladi alzayme a ak demans ak demans yo ki gen rapò se pa yon kondisyon ke li sèlman afekte moun ki gen pèt la memwa oswa sentòm yo. Li afekte tout fanmi an, kominote a, vwazen yo, zanmi yo. Se konsa, nou enkli tout moun paske nou vle asire w ke byennèt la nan tout moun yo ak tout moun ki ap konbat ak sa a se pran swen nan.
[SPEAKER_05]: Se konsa, mwen vlope moute pati mwen ak cho mwen ak mou paske ou jis te resevwa yon fofile aperçu nan dezyèm pati a nan sa a paske se konsa mwen te di mwen te pral vlope l 'ak cho ak mou isit la nou ale mwen pral ba ou yon egzanp sou diferans ki genyen ant memwa emosyonèl ak istorik ak Mwen pral di ou yon istwa. Sa a se yon istwa reyèl vre. Li nan 1970-yon bagay. Mwen chita nan 15 Rockville Park ak renmen an Lè sa a, nan lavi m 'yo, ki moun ki mete Gina Tay pafen. Nou ap koute Wiod 1090 sou Dial AM ou. Disk jockey a se Sonny Joe White. Yon chan vini sou yo rele dedye a yon sèl la mwen renmen, epi nou bo la pou premye fwa. Tout sa mwen te jis di ou se istorik. Tout bagay. Men, si mwen jwenn nan alzayme, nan pwen sa a nan lavi mwen kote mwen pral bliye tout bagay mwen jis te di ou. Men, si li se yon jou ete cho, epi mwen chita deyò, ak Bondye ede m 'si yon fanm mache pa mete Gina Tay pafen, ak yon chante dedye a yon sèl la mwen renmen vini sou, mwen gen 16 zan, foli nan renmen, ak jis chita la, Paske sa mwen vle ou konprann se ke sa maladi sa a vòlè nan sèvo nou an pa janm manyen kè nou. Paske lanmou ap toujou sonje. Koulye a, mwen te di ou mwen te pral fini li ak cho a ak mou pou mwen. Men, mwen pral lage l 'bay Christine. Nou te fè ou atant.
[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 tout moun. Non mwen se Sahana. Mwen se yon koòdonatè rechèch klinik. Mwen travay ak Christine ak mwen pral pale yon ti kras sou etid la sosyal. Mwen pral kenbe li kout paske li a ap resevwa kalite an reta. Se konsa, etid sosyal la vle di pou sipòte moun kap bay swen nou yo nan ADR D aprantisaj. Ki sa ki ADRD se, se maladi alzayme a ak demans ki gen rapò. Se konsa, nou ap reyèlman kap chèche moun kap bay swen ki poko peye nan moun k ap viv ak demans, ak kap wè ki jan yon pwogram sis-semèn ka sipòte yo, diminye estrès yo, ak amelyore byennèt yo an jeneral. Li nan sèlman sis semèn, ak chak sesyon se 60 minit. Li nan konplètman vityèl, konsa ou ka fè li soti nan nenpòt kote, telefòn ou, grenn, anyen tankou sa. Ak yeah. Se konsa, si w enterese, tanpri, ezite pale avè m 'apre sa. E nou menm tou nou gen avyatè ki sitiye sou bò gòch nan tab la ble moute isit la. Mèsi.
[Ramirez-Gomez]: Apre sa, mwen konnen ou te chita kounye a pou yon tan long, se konsa mwen pral trè kout, men mwen vle mete aksan sou ankò epi yo bay yon envitasyon nan tout moun nan ou, paske chak nan ou konte, tankou zanmi ou yo, vwazen ou, kominote ou. Ou enpòtan pou nou, e nou vle tout moun enkli ladan li. Mwen te di l 'ankò epi mwen pral kontinye di li. Mwen travay anpil, pou egzanp, ak kominote Latino mwen an. Tout moun nan ou se kominote nou an, se konsa nou vle envite ou yo patisipe. Fondamantalman, gen yon anpil nan enfòmasyon, depliyan, opòtinite ke ou gen. Men, mwen vle ou konnen ke se pa sèlman ou konte, men nou menm tou nou vle ede, paske sa se objektif la nan rechèch. Nou pa jis kolekte enfòmasyon pou dedomajman pou la nan li. Nou vle fè yon diferans. E ke, nou pral reyalize sa pa, nan kou, konprann pi bon sa k ap pase nan kominote sa yo diferan. Ki jan nou diferan de tout nimewo sa yo ke nou tande jodi a? Poukisa se yon risk pi wo? Kisa k ap pase isit la? Lè sa a, ki jan nou ka bese ki risk ak fè bagay sa yo pi bon pou chak youn nan nou? Se konsa, mwen, nan kou, mwen travay anpil ak moun kap bay swen yo, ak pasyan yo, ak an sante, ak tout moun. Se konsa, mwen envite ou konsidere rantre nan nou nan efò sa a paske nou vle konte tout moun sou vwayaj sa a.
[SPEAKER_05]: Ok, se konsa nou aktyèlman gen yon bagay ki enteresan. Nou gen youn nan chèchè nou yo ki nou pral eseye ak fè sa nòmalman. Mo kle nan fraz sa a se eseye. Dr Seth Gale pral pale sou yon etid ke nou genyen. Li rele etid la devan yo. Ak bagay la fre sou etid la devan se ke yo ap chèche pou moun ki pa gen nan alzayme. Oh. Paske ou te gen yon debaz. Se konsa, mwen pa pral vòlè loraj Seth la. Èspere ke, vini sou. Nou pral eseye figi li soti. Um wè sa a se poukisa nou gen e konsa ou konnen ki sa pandan ke nou ap eseye figi soti sa a soti mwen te gen yon aparans envite espesyal aswè a mwen mansyone l 'pi bonè pou kite m' fè sa a Tony vini sou moute moun sa a se Sa a se zanmi m 'ak kolèg, Dr Tony Pham, ki moun ki te ap travay sou doulè kwonik nan Afriken-Ameriken. Apre sa, li te kòmanse moute kèk seri atelye. Se konsa, tankou mwen te di, mwen pa vòlè loraj ou. Ale nan isit la.
[SPEAKER_06]: Mwen jis vale kèk jansiv. Mèsi pou sa. Mwen jis ta renmen jwenn yon moman yo gen yon wonn nan aplodisman pou sant kominotè sa a. Mwen pral kenbe li kout, men mwen reyèlman apresye espas sa yo paske mwen santi yo ap tèlman enpòtan pou byennèt nan kominote a. Ak jan ou te wè, gen nan yon anpil nan efò kreyatif ki ap fèt satisfè bezwen yo ki pa satisfè nan Popilasyon diferan etno-rasyal, diferan maladi, diferan maladi. Se konsa, mwen se yon pati nan yon gwoup nan Mass Jeneral ak Mesye Mike Kincaid, Noman, Mari tounen la, epi nou ap aktyèlman kap pote prèv ki baze sou entèvansyon nan anviwònman an kominote a fason pou fè entèvansyon livrezon pa moun ki nan kominote a pou kominote a. Nan yon pri ki pa inexorbitantly chè, nan yon fason ki se kiltirèlman aksesib. Se konsa, etid nou an, nan mitan plizyè yo dwe mansyone isit la, se kap nan kilti adapte yon entèvansyon lide-kò Pou pi gran Ameriken nwa ki gen byen bonè n bès mantal ak doulè kwonik. Epi sa a, se yon bagay ki enteresan yo pran an kont paske jan ak doulè kwonik yo se de fwa plis chans gen byen bonè bès mantal, jan nou rele li, ak travay la de fè chak lòt vin pi mal. Se konsa, li trè enpòtan nan sib tout bagay sa yo ki asosye ak enkyetid aje, tankou byen bonè n bès mantal. Ak fè sa, nou ap bati yon Komite Konsèy Kominote, esansyèlman pote ansanm ekspè nan kominote a ak eksperyans te viv ki idantifye kòm ki pi gran Ameriken Nwa, ki moun ki idantifye kòm ki gen doulè kwonik ak gen byen bonè bès mantal. Esansyèlman bay opinyon yo pou nou ka kreye entèvansyon sa a pou livrezon nan kominote a. Paske esansyèlman, tankou lòt moun te mansyone, pousantaj asirans yo tèlman wo pafwa. Swen sante trè aksesib nan fwa. Se konsa, li enpòtan yo kalkile fason kreyatif jwenn swen pou moun ki bezwen li.
[SPEAKER_05]: Isit la nan yon ploge sinik. Èspere ke ou pral wè Tony ankò. Mwen vle di, jan mwen pataje, mwen renmen sant sante kominotè sa a. Mwen vle di, mwen te gen yo dwe onèt, lè mwen te resevwa isit la, mwen te tankou, mwen te isit la anvan. Men, li te tèlman lontan de sa. Ak yeah, si envite, sa a, se yon ploge sinik, nou ta renmen tounen. Tout dwa, nou pare? Bonjou? Ok, Seth. Èske ou ka tande m '? Nou ka tande ou. Se konsa, dam ak Mesye, sa a se Dr Seth Gale, ki moun ki, Seth, ou pral pran nou lakay ou, ok? Ou se dènye oratè a aswè a. Tout dwa.
[Seth Gale]: Trè bon. Mwen vle asire w ke ou ka tande m ', menm si. Ou ka? Wi. Tout dwa. Sa a te yon gwo diskisyon. Mwen regrèt ke mwen pa ka la nan moun. Mwen te koute tout li. Ou nèg gen kesyon bèl bagay. Mèsi, tout moun, pou vini aswè a. Se konsa, mwen se Dr Gale, Seth Gale. Ramirez Gomez te pale sou wòl li nan Mass Jeneral. Se konsa, mwen gen yon wòl menm jan an. Mwen se yon newològ nan Brigham ak fanm yo, epi nou travay vrèman byen ansanm sou yon kantite de bagay sa yo, ki gen ladan etid rechèch ak tou swen, pran swen nan pasyan yo. Te gen yon koup nan tèm mwen vle ranmase sou, e mwen vle pale sou sitou yon etid. Sa a se bagay la prensipal mwen vle pou li ale nan. Men, nou te pale sou detekte alzayme a byen bonè. Sa a te yon gwo tèm nan diskisyon sa a, ki soti nan konvèsasyon orijinal Mike a, ki soti nan yon moun nan odyans lan ki te pale sou li te gen yon eskanè PET fè ak rekonèt sentòm bonè. Tout bagay sa yo vizan nan direksyon pou Ap eseye figi konnen ki sa fè si ou idantifye chanjman ki fèt nan sèvo a pou yon moun ki se bonè maladi alzayme a, reyèlman bonè, menm anvan ou gen sentòm yo. Se konsa, kisa ou fè sou sa? Apre sa, mwen vle di, tankou yon anpil nan kondisyon, ou konnen, ou panse sou dyabèt oswa maladi kè, objektif la, dwa, se idantifye Chanjman bonè pou ou ka eseye entèvni ak fè yon bagay sou li. Se konsa, pran dyabèt, nou tout vle konnen lè sik kòmanse chanje nan yon fason anvan li kòmanse bay neropatik ak anvan li kòmanse afekte vizyon ak ki sòt de bagay sa yo. Se konsa, sèvo a pa diferan nan fason sa. Lide a se pou eseye detekte chanjman sa yo bonè. Konsa Li pa klè, menm si, ki sa yo fè nan pwen sa a, dwa? Ou ka konseye tout bagay sa yo vi an sante ki vrèman enpòtan, epi mwen pa vle pou misyon pou minimize nan tout bagay tankou fè egzèsis ak gen yon rejim alimantè ki an sante ak gen entèraksyon pozitif sosyal ak diminye estrès ak ap resevwa bon dòmi ak bagay sa yo. Men, li pa klè egzakteman ki lòt bagay yo ka fè. Se konsa, gen yon etid ke nou ap fè. Brigham a se yon sit pou etid sa a sou 85 oswa 90 atravè lemond, aktyèlman. Sa rele etid la devan, tankou etap devan oswa sote devan yo. Ak etid sa a se pou moun ki gen laj 55 a 80, ki moun ki Pa gen okenn difikilte memwa. Yo ta ka enkyete w sou memwa.
[WKpjKFdpTFg_SPEAKER_15]: Moun yo ri paske kèk nan yo ki gen plis pase 80. Ki gen plis pase 80.
[Seth Gale]: Yo pa kalifye pou etid la. Jis ase. Jis ase. Men, yo ka konnen kèk Youngins. Ok. Nou gen yon pakèt etid. Se konsa, aktyèlman, mwen vle tcheke yon sèl bagay anvan paske limit yo laj yo se yon ti kras diferan. Wi, se konsa mwen te dwat. Se konsa, li se 55 a 80. Se konsa, nou gen yon pakèt moun sou syans ki ale nan laj 85. Men, lide nan etid sa a se ou dwe gen laj 55 a 80. Ou vini nan pou yon vizit, epi ou gen yon tès memwa debaz fè. Epi ou ka enkyete w sou gen difikilte pou memwa. Sa oke, men ou pa bezwen menm enkyete. Ou ka jis pou yon moun ki ap viv lavi ou ak li enpòtan pou ou pou w, ou konnen, kalkile yon fason bay tounen oswa patisipe nan rechèch ak petèt ou gen yon istwa fanmi. Moun sa yo se tout posiblite yo. Epi ou gen yon tès memwa debaz fè. Lè sa a, gen nan yon tès san ki nan fè. E ke tès san an gen tès sa yo pou sa yo kalite fragman nan san an, ki sèvo a ap bay koupe, ki ka predi si gen chanjman alzayme a ale sou nan sèvo a soti nan tès la san. Se konsa, sa a se yon reyèlman pwòp, sa a se yon reyèlman pwòp Ase nouvo avansman teknoloji pou kapab detekte sa. Se konsa, si ou gen tès san sa a, ak tès la san endike ke si ou te gade nan sèvo a nan yon eskanè, si ou te ale nan yon scanner ak gade nan sèvo a, Lè sa a, ou ta gen plakèt sa yo nou te ap pale de, plakèt sa yo amyloid. Se konsa, sa a, se premye etap la nan etid la. Yon tès san nòmal, ki ta correspond ak gen plakèt nan sèvo a. Men, si sa a, se ka a, si li nan pozitif, tès la, Lè sa a, ou vini nan gen tès la D, ki te rele yon eskanè PET, ki nou te pale yon ti kras sou pi bonè nan diskisyon an, konfime sa. Konfime ke ou se koyitif nòmal, se konsa memwa ou ak panse ou se nòmal pou laj, Men, ou gen siy sa yo byen bonè epi nou rele sa a, se kalite tankou gen kondisyon an nan Alzheimer, men anvan ou gen sentòm dwa pou ou pa tout bagay sa yo ke Mike ak lòt moun te pale sou ki gen rapò ak, ou konnen, li te gen konfizyon oswa bliye bagay sa yo ke sa a pa rive ankò pou ou. Men, ou jwenn tout bagay sa yo soti, nan chemen an, nan sa yo de premye vizit ke mwen jis dekri nan etid sa a. Lè sa a, sa k ap pase Lè sa a, se si ou gen plakèt sa yo sou tès la D 'nan sèvo, ki te rele yon eskanè PET, Lè sa a, w ap enskri nan yon etid, ki se yon etid kat ane, ki nan gade nan yon medikaman yo rele Lecanumab oswa Lekembe. Lè sa a se yon medikaman ke ou ka genyen Mwen pa konnen si mwen ap resevwa fidbak, men sa a se yon medikaman ke nou jis te kòmanse itilize, kòm Dr Ramirez-Gomez te pale de, pou pasyan ki gen maladi byen bonè alzayme la. Paske li te ale nan tout etid yo epi li te apwouve pa FDA a pou itilize, men sa nou pa konnen se si medikaman sa a Kapab itil pou moun ki poko gen sentòm, men yo gen menm chanjman nan sèvo ke nou wè yon ti kras pita sou. Se konsa, li vrèman tankou entèvansyon bonè, bonè, chanjman bonè. Pou tounen nan youn nan pwen yo ki Mike te fè sou patisipasyon, ki se ke nou jis pa konnen si pa gen, nou pa konnen efè diferans nan popilasyon diferan si pa gen patisipasyon nan popilasyon diferan. Ki gen ladan popilasyon nwa. Mwen konnen ke seri sa a konsantre sou sante nwa. Li gen ladan Pasifik la oswa popilasyon zile yo. Li gen ladan Ameriken Panyòl. Li gen ladan Tout moun atravè liy rasyal ak etnik ak liy sèks kòm byen, gason ak fanm. E kòm Mike te allusion, ou konnen, rechèch pral kontinye ak lide a se maksimize konesans sa Se konsa, ki rezilta nan yon etid tankou yon sèl la mwen dekri ka aplike nan yon fason a tout moun. Men, si pa gen jis ak egal patisipasyon ak reprezantasyon ki reprezante popilasyon an nan Etazini yo, Lè sa a, nou pa pral konnen ki sa ki bezwen yo dwe chanje sou tretman oswa sou rechèch yo nan lòd yo reponn kesyon sa yo. Se konsa, sa a, se rezime kout mwen an nan yon nan yon etid gwo ke nou ap envite moun vini ak patisipe nan. Apre sa, mwen kontan reponn nenpòt kesyon sou li oswa ale nan plis detay sou li. Mwen panse ke, Mike, li fè sans yo louvri jiska kesyon tankou pou dènye kalite a nan 10, 15 minit isit la.
[SPEAKER_05]: Se konsa, nou gen nenpòt ki? Ale pi devan. Sa a se byen bonè nan prezantasyon ou an. Oke, kite m 'kite m' kite m '. Seth, ou ka tande l '? Wi. Ok, ale pi devan.
[SPEAKER_11]: Mwen te resevwa nan prezantasyon pi bonè ou sou analiz bèt kay. Fè eskanè bèt kay la ke ou te pale sou, lè ou jwenn eskanè a PET, ki detèmine ki kalite nan alzayme a, demans ke ou ka genyen?
[Seth Gale]: Se konsa, sa a, se yon bon kesyon.
[SPEAKER_05]: Se konsa, nan biwo doktè a- Se konsa, Seth, reyèl rapid, pou jan yo nan kay la, kesyon an te, eskanè a bèt kay, li detèmine ki kalite nan alzayme ou gen? Oswa demans. Oswa demans. Mwen regrèt, ki kalite demans ou genyen?
[Seth Gale]: Se konsa, sa a an patikilye PET eskanè mwen te pale sou nan kontèks la lè ou ta vini nan yo patisipe nan etid la devan mwen te dekri, se kap espesyalman pou maladi alzayme la. Se konsa, sa a, se kalite a nan demans ki defini nan sa yo plak amyloid. Men, mwen panse ke kesyon sa a vin nan, an jeneral, si ou gen memwa oswa panse oswa chanjman konpòtman, epi ou vini nan yo wè yon doktè tankou tèt mwen oswa Dr Ritchie oswa Dr Ramirez-Gomez, Ki jan nou kalkile ki kalite demans li se yo nan lòd yo konnen ki sa ki rekòmandasyon an ak ki gen la yon medikaman sèten yo itilize? Epi gen diferan moso enfòmasyon ki ka ede ak sa. Gen sentòm yo tèt yo. Se konsa, ki sa egzakteman k ap pase? Ki kalite memwa oswa konpòtman oswa chanjman panse se li? Èske li jis memwa oswa se li tou rezoud pwoblèm oswa pran desizyon? Èske moun nan tou gen sa a kalite difikilte pou dòmi oswa ki gen chanjman ak mache yo oswa demach yo oswa mouvman je yo? Se konsa, nan lòt mo, sa a, se kategori a nan sa nou rele sentòm yo. Se konsa, jis tankou nenpòt ki kondisyon, opresyon oswa maladi nan poumon, gen nan yon seri de sentòm ou ta prezante bay doktè a ak. Li pa jis mwen gen difikilte pou memwa, men nou pral amann melodi ak figi ki soti. Dezyèm lan se yon eskanè regilye nan sèvo a. Se konsa, pa yon eskanè PET, men tankou yon eskanè MRI. E pafwa, pa toujou, men pafwa gen yon modèl sou ki MRI ki ka correspond ak sentòm yo ke moun nan gen. Se konsa, ou gen sentòm, ou gen yon eskanè MRI, ak Lè sa a, ou gen memwa ak tès panse. Se konsa, pa sèlman sonje mo sa a epi di li m 'de minit pita, men plis tès detaye tankou, ou ka kopye imaj sa a? Men, si mwen li paragraf sa a pou ou, mwen vle ou eseye sonje reyalite sa yo espesifik. Se konsa, fondamantalman pèfòmans sou memwa ak tès panse. Men, lè ou konbine twa moso sa yo nan enfòmasyon, w ap bati yon istwa nan tankou yon dyagnostik. Èske sa a demans kò Lewy? Oswa èske maladi alzayme sa a? Oswa èske sa a demans frontotemporal ak sa yo lòt kalite demans ra? Mwen panse ke se sa ki kalite kesyon sa a ap resevwa nan, ki se gen zouti yo itilize. Se vre, menm jan ak yon konjesyon serebral, Sa dyagnostik la definitif, dyagnostik la 100% se tankou sa ou gade nan ak yon byopsi, ki nou pa fè pou sèvo a tipikman, oswa ou gade apre lanmò. Sa se dyagnostik 100% definitif. Men, li pa sispann nou soti nan ke yo te prèske la. Avèk tout zouti sa yo mwen dekri, espesyalman ak makè sa yo, nou ap 95, 97% la. Epi se menm bagay la nou fè ak tout maladi, ak nemoni, Tibèkiloz, nou gen biomarqueurs, nou gen tès san, e konsa nou ap resevwa anpil, pi bon nan kalkile li soti. Men, mwen panse ke li enpòtan yo fè distenksyon ant lefèt ke nou ka gen enfòmasyon desizyonèl, tankou trete yon moun ki gen medikaman yon alzayme a ki baze sou enfòmasyon sa a, san yo pa gen sèvo a apre lanmò, tankou yon otopsi. Ou pa bezwen sa gen yon tretman desizyonèl.
[SPEAKER_05]: Oke, mwen te gen yon kesyon isit la. Mwen pral repete kesyon an, ale pi devan, paske mikwofòn la pa pral rive la. Nou pral jwenn mikwofòn la pou ou. Eskize m ', padonnen m', vini nan.
[SPEAKER_15]: Mwen gen yon ... ki jan li rele?
[o9F0qYH9Geo_SPEAKER_05]: Afazi?
[SPEAKER_15]: Lè m 'te ti kras, ale sou twazyèm ane, lè mwen soti nan lekòl la ak mwen ale lakay ou, Mwen tonbe nan dòmi ak reveye. Chak ... mwen te gen ... Se konsa, li se yon kesyon sou dòmi?
[SPEAKER_05]: Pran tan ou.
[SPEAKER_15]: Mwen te gen yon ... Isit la epi gen epi gen. Ki pi gran. Pi gran frè ak sè. Non. Oke. Ki pi gran. E mwen te ale lekòl. Mwen gen 80. Sou yo ak sou yo ak sou. Wi. De tout fason, 80. Mwen gen 80.
[SPEAKER_05]: Ou se jenn ase yo dwe nan etid la.
[SPEAKER_15]: Yeah, yeah, yeah. Um, uh, um, uh, uh, uh, uh, uh, uh, mwen, uh,
[SPEAKER_05]: Li nan oke. Li nan oke. Ou konnen ki sa? Mwen pral bwa alantou apre sa, kidonk si ou vle, jis gen tan pwan m 'ak nou pral pale. Oke? Li nan oke. Tout dwa. Se konsa. Oh, mwen te? Yeah. Èske mwen te gen yon lòt kesyon? Oh, wi, mwen te fè sa. Oke. Paske li pa ap resevwa tounen la. Ale pi devan. Ki kesyon an?
[SPEAKER_00]: Kisa yon moun ka fè nan yon laj ki pi piti pou eseye ak diminye chans pou jwenn demans si sa a menm posib?
[SPEAKER_05]: Se konsa, Seth, kesyon an pou jan yo nan kay ap gade sa a nan konfò nan kay yo, kesyon an se, ki gen la lòt faktè risk san konte laj, e gen yon bagay ke yon moun ka fè prevantif eseye epi kenbe nan ap resevwa nan alzayme oswa omwen reta li?
[Seth Gale]: Yeah, gen definitivman. Mwen kontan pran yon koud nan li tou. Mwen konnen tou ke Dr Ramirez-Gomez la tou. Mwen pa vle Q a & A jis yo dwe sou sa mwen di, ki sa mwen te kòmanse ak etid mwen an. Kite m 'kòmanse ak lòt moun ka ajoute. Se konsa, gen yon anpil nan faktè risk modifye, ki se bagay sa yo ke ou ka fè soti nan laj presegondè e menm pi bonè sou diminye risk ou nan demans. Ak sa a gen ladan kèk nan bagay sa yo nou te pale sou yo. Se konsa, bagay sa yo tankou ap resevwa regilye aktivite fizik ak fè egzèsis aerobic, kenbe yon rejim alimantè ki se tou pre tankou sa nou panse osijè de sa nou ta ka rele tankou rejim alimantè a style Mediterane oswa yon rejim alimantè ki gen kantite lajan ki ba nan grès satire ak sik trete. Nou konnen ke pou moun ki nan mitan a ki gen plis laj ki tande difikilte pou lè trete se tèt li yon faktè risk endepandan swa prese aparisyon nan defisyans memwa oswa nan kalite plon oswa yo dwe yon faktè risk pou demans. Se konsa, ap resevwa aparèy pou tande ak asire w ke odyans yo teste se yon bagay ki ka fè pita. Sa yo se jis kèk nan bagay sa yo ke nou konnen. E nou konnen enfòmasyon sa a soti nan lè ou etidye moun ki nan sa yo alontèm etid aje soti nan, di, ou konnen, 40s, 50s. Mwen swete nou ta ka ale pi bonè epi yo gen plis, ou konnen, menm pi bonè. Ou ka entèvyou ak moun ak reyèlman jwenn enfòmasyon detaye sou ki kalite konpòtman fòm yo ap fè, ki sa ki rejyon an, kote yo ap viv la.
[SPEAKER_05]: Seth, Seth, sèlman rezon ki fè mwen ap prepare pou koupe ou se paske yon moun, mwen pa mansyone okenn non, Sophie, bliye chaje laptop yo. Oh, nou ap sou pèdi ou. Bagay batri a jis déja moute. Men, kite m 'di sa a, paske nou ap tou jis sou nan tan. Premye a tout, mwen vle di di ou mèsi tout pou vini. Mwen te jwi sa. Apre sa, mwen te deja koze ak Lisa. Nou ap vini tounen. Mwen renmen yon cliffhanger. Nou pral tounen. Ak sa nou pral fè se olye pou yo m 'pote yon doktè gazillion, poukisa nou pa fè tankou youn nan yon tan oswa de nan yon tan epi nou ka jis pale. Tout dwa, se konsa sou non nan Sant Rechèch Maladi Massachusetts la, mwen vle di di ou mèsi pou vini soti nan yon swa Mèkredi. Li se literalman 8 è. Ale pi devan. Liliana, ou te fè li poze kesyon sa a? Nou ka fè sa an panyòl. Nou ka fè sa nan lang angle. Men, si nou ka jwenn yon moun tradui nan yon lòt lang, nou ka fè li la. Sa a se fason mwen di, wi, nou kapab. Se konsa, li te di sa, Sophie, pran nou lakay ou.
[WKpjKFdpTFg_SPEAKER_15]: Mwen panse ke Mike te di li deja. Mèsi poutèt ou, tout moun, pou vini soti. Mwen panse ke mwen te aprann anpil nan premye fwa mwen te rive soti nan Mike. Jiska kounye a, di ou mèsi, Dr. Gayle. Mèsi poutèt ou, Dr Ritchie, Dr Ramirez-Gomez, ak tout lòt moun. Tony, Dr Sahara, mèsi pou vini soti. Ak pwochen seri nou yo pral sou sante nwa matènèl mwa pwochen. Ak yeah, nou ap soti nan tan. Se konsa, mwen te chaje òdinatè mwen an, men nou ap itilize chwèt la. Se poutèt sa mwen te ploge nan menm pò a. Men, mèsi, tout moun, epi yo gen yon bon nwit.