[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]: 非常感谢。
[SPEAKER_05]: 因此，问题是，您如何鼓励人们为自己及其家人倡导？ 这很有趣，因为我在这里有托尼·农场（Tony Farm）博士，但我不会打电话给他，因为那会让他感到尴尬。 我要做得更好。 克里斯汀，您如何回答人们如何为自己倡导的问题？ 如果您愿意，我可以拿麦克风，也可以拿起麦克风。 这是一个偷偷摸摸的预览，因为这是克里斯汀·里奇（Christine Ritchie）博士，他将在以后讲话。
[Christine Ritchie]: 因此，感谢您的问题，还可以靠近。 因此，这非常重要，这很难，因为我们许多人认为这是一个权威人物，或者我只需要尊敬并表现出尊重的一切，但这是您的身体。 而且您了解自己的身体，并且认识您的人也最了解您的身体，因此，如果您觉得不是这样，就像该人不听您的话，或者他们实际上没有注意，那么请为自己站起来。 请说，我想要第二个意见，还是您可以将我推荐给专家，还是可以回答这些问题？ 不要沉默。 而且我认为很多人沉默。 然后他们回家，就像，嗯。 因此，当这种感觉开始开始时，开始问这样的问题，我为此担心。 你能帮我理解吗？ 而且，如果您没有得到令人满意的答案，那么我真的可以有第二个意见吗？ 你能把我推荐给别人吗？
[SPEAKER_05]: 好的。 谢谢。 快点。 不要害怕。 我的意思是，来吧。 我知道我不是唯一一个看到人们失去理智的人，因为麦当劳的炸薯条很冷，但会走出医生的办公室，我不知道刚刚发生了什么。 快点。 保持活跃。 您是您的家人，亲人，第一。 我正在重复她说的话。 您是他们的第一激进主义者。 如果您不这样做，没有其他人会为他们做。 好的，让我们去下一个。 前进。 我要引导你回来。 因此，问题，如果患者否认，或者医生是好，不，你很好。 不用担心。
[Christine Ritchie]: 是的，无论哪种方式，对吧？ 因此，要么医生不是要承认这个问题，要么是您是护理伙伴，而实际上经历痴呆症的人则是否认的。 因此，不幸的是，对于痴呆症，人们对自己的疾病没有洞察力并不少见。 因此，他们可能会认为自己很好。 这很棘手，对吧？ 这就是为什么很早就值得与该人保持良好的关系并让他们成为他们的发言人，让他们签名，您知道，这种HIPAA豁免并说，是的，我可以与您交谈。 这样，您与医生交谈并说，让我告诉您我要观察的内容。 这很重要。 而且，大多数人知道，临床医生疯狂地感谢。 要获得不同的观点，因为他们知道许多生活在痴呆症中的人并不了解，他们不知道或对实际发生的事情没有洞察力，或者他们非常害怕，他们害怕会发生什么。 但是，无论哪种方式，这就是关系和建立信任的地方，并给他们机会让您成为他们的发言人，他们为此签署了豁免， 那医生可以和你说话。
[SPEAKER_05]: 是的。 我还想背负的其他东西。 得到帮助。 和我妈妈在一起，你知道，我是坏人。 我的哥哥是个好人。 我们有好警察，不好的警察，妈妈，你知道，你必须这样做。 如果您不这样做，我们将不得不去做。 妈妈，他转过身走，现在，你真的知道你不想让迈克做等，等等，等等。 我想，我简直不敢相信，但它起作用。 这使生活变得更加轻松。 向后前进。 因此，问题是，是否有平均年龄开始寻找这些警告信号？ 这是一个由两部分组成的问题。 第一部分是某人在60多岁时开始出现症状并不少见。 但是请记住我说的。 您不会注意到这一点。 好的？ 现在，有很小一部分的人得到了我们所谓的早期发作老年痴呆症。 那些人在年轻的时候就得到它。 我的意思是，我已经看到了40多岁，40多岁的人们的研究。 现在，我这样说。 对于现在这个房间里的每个人都想知道，那会是他们吗？ 您不会想知道，您已经知道了。 因为对于这样的事情，首先，它往往会在家庭中更积极地运行。 我的意思是，几年前，我曾经在阿尔茨海默氏症协会工作，我遇到了照顾孩子的母亲。 他们是成年人，儿子和女儿。 所以我的意思是您不会坐在这个房间里想知道您是否适合该类别。 你已经知道了。 这就是所谓的早期发作阿尔茨海默氏病。 同样，进行测试很重要的另一个原因。 我一直在后面有一个问题。 你举起手。 我们回答了吗？ 好的，克里斯汀，您不必为此而来。 我明白了。 我明白了。 所以问题是，您和您的医生不同意。 而且，您正在寻找医生似乎正在轻描淡写的另一种护理。 那是您获得第二意见的时候。 您只需获得第二个意见即可。 没有人的感觉受到伤害。 这是我希望人们能理解的。 要去看另一位医生，因为您不同意您的初级保健医生，所以生活还在继续。 没有人的感觉会受到伤害。 这并不是说他们明天要开除您或作为病人取消您。 您只想推荐。 就这样。 它发生了。 我们走吧。 那么，经过测试后，您会做什么？ 您已经接受了亲人的测试。 您已经获得了结果。 这是阿尔茨海默氏症，是轻度的认知障碍，是路易的身体，它是其中之一，您现在确切地知道出了什么问题。 接下来你要做什么？ 您可以将有关这种疾病的一切学习，作为护理人员。 您必须成为这种疾病的专家。 主要是这样，当您坐下来时，正如克里斯汀（Christine）所说，您想找到HIPAA形式，您想成为医疗保健代理，您想获得监护权。 阿尔茨海默氏病是一种疾病，不是什么时候。 当那个人要到达他们无法再做某些事情的时候。 因此，您想领先。 而且，我总是告诉人们，在监护下，如果您在早期阶段跳上它，那只是签署了一些文书工作，在法官，繁荣时期，您已经完成了，这不花那么长时间。 而且它实际上并没有花费任何费用。 如果您等待或家人，我总是告诉家人，每个人都需要坐下来并在同一页面上。 因为我已经看到人们去法庭并为菜肴作斗争。 好吧，妈妈说我要去那些菜。 我没有做这个。 发生的事情是，他们去找律师。 那些律师去法庭。 他们的律师的工作是使另一面看起来像让娜娜和他们一起生活，她将在一天之内死。 不认识这个人的法官都听着这两个论点。 这位法官任命另一位律师为临时监护人并不少见，他们甚至从未见过纳娜。 并考虑一下。 好吧，现在您听说过的那个论点，现在法官不能让Nana独自回家，或者与这两个中的任何一个一起回家，因此监护人必须将Nana置于机构中。 你看到我要去哪里。 因此，重要的是要尽快进行此操作。 学习一切。 照顾所有这些法律问题，以便在剩下的时间里，您可以做护理人员的工作。 而且，您知道的越多，您就越惊讶。 好的，您可以通过与当地的老年服务机构或梅德福镇和索菲（Sophie）以及这里的团队联系，从而获得此信息。 有一支非常好的团队。 我有机会与其中一些交谈。 因此，这里有服务。 好的，这是两件事。 她问的问题是，是否有可以准确指出该人的测试类型？ 就尸检而言，这是每当您看到纪录片或任何有关阿尔茨海默氏症的纪录片时，您总是会听到有关斑块和缠结的消息，这通常是在该人去世并将大脑捐赠给科学的情况下进行的，他们进行了尸检，并且他们正在寻找某些事情。 最近有一项研究表明，可能有些人可能有这些东西，这些斑块和缠结，但永远不会得到阿尔茨海默氏症。 但是，我只是把它放在那里。 至于第一个，再次，如果您还记得我们谈论测试时，他们会经过一系列测试。 这不是15分钟的事情。 我听说有些人回去了，这花了两天时间，因为该人在第一天很累，他们不得不回来继续测试。 因为总体目的是消除我们看到的所有不同类型的疾病。 前进。 那挺好的。 淀粉样蛋白，对。
[SPEAKER_12]: 这是错误的。 当您坐在那里并且正在看某些东西时，您知道它的名字是什么，但是您不知道该如何处理。
[SPEAKER_05]: 或者您不知道该名称是什么，您认为自己可能是一个问题。 所以换句话说，我要去，因为您提到了自己的名字朱莉，朱莉分享的是，让她去测试并告诉她的医生有些问题的原因是她再也无法否认没有错。 等一下，朱莉娅。 我要让你出名。 凯文，不要为此恨我。 我们有菲尔·多纳休（Phil Donahue）闪回。
[SPEAKER_12]: 好的。 我的姨妈，母亲的妹妹有。 好的，很好。 现在和我的家人在一起，无论家庭的一面都有它， 另一边有它。 现在，我父亲被诊断出患有它。 他的侄女被诊断出患有它。 另一个侄子被诊断出患有它。 我说，我要去去看医生。
[SPEAKER_05]: 朱莉，你的意思是，就像我和祖母说的那样，你看过了。 你知道要寻找什么。 如果有人告诉我，哦，不用担心，好吧，你知道，是的，不，我需要给我再来一位医生。 并感谢您分享。 所以让我们走。 哦，继续。 哦。 你知道吗？ 您是第一个问我这个问题的人。 克里斯汀，这是一个很好的问题。 有一定年龄吗？ 谢谢。
[Christine Ritchie]: 所以问题是，您是否应该在某个年龄进行测试？ 答案是否定的。 实际上，有一个国家组织提出了有关筛查有意义和没有什么意义的建议。 因此，最大的答案是否定的，但这是一个。 因为但是，如果您有风险因素，就像您描述的那样，在哪里有家族史，或者您有糖尿病和高血压史，就像迈克所说的那样，您还有其他事情可能会使您面临更大的风险，是的，可以进行筛查是合适的。 实际上，正如迈克所说的那样，我们越来越鼓励人们，尤其是现在，当我们开始在痴呆症过程中实际上做得更好，而不是晚些时候，而不是很晚， 然后，您确实必须早日筛选和测试。 因此，我们越来越多地考虑如何确保实际面临较高风险的人实际上被筛选。 因此，您将在明年或人们认识的第二年开始看到一些变化，尤其是在这些新治疗中，我们需要给人们提供早期测试的机会。 可能是，但是我认为，因为我们进行了越来越多的血液检查，并且您听说了PET扫描，因此当事情看起来不正确时，评估人实际上会更容易。 即使在过去的一年中，这是莉莉安娜（Liliana），甚至我们对痴呆症的类别和阶段的看法也发生了变化，因为我们有更多信息 从血液测试，来自脊柱液体的液体，大脑的液体比我们过去的液体，以帮助提供有关事物的区分。 是的，是的，所以问题是，如果您的保险使您难以获得您认为可能合适的测试，该怎么办？ 因此，这是真实的事情，实际上是DR。拉米雷斯·戈麦斯（Ramirez Gomez 危险因素，然后您筛选阳性，也就是说，您的记忆测试中有一些事情，也许其他事情表明您实际上处于痴呆症的风险很高，我们特别担心在保险公司更有可能为此付出的可能性时，我们会担心区分不同种类的痴呆症或被考虑进行治疗。 话虽如此，有一些保险公司，它们仍然是很高的扣除额，对吗？ 因此，他们可能会支付一千美元，但他们不支付全部费用。 因此，值得在前端提出这些问题，并确保您可以通过账单而不必出来，然后等待，这是什么？ Ramirez-Gomez博士，您想添加任何东西吗？ 好的。 好的。
[o9F0qYH9Geo_SPEAKER_05]: 正确的。
[Christine Ritchie]: 正确的。 正确的。 因此，您听到Mike谈论轻度认知障碍，这就是人们在他们实际上遇到麻烦完成工作之前开始遇到问题的地方，而这不一定会干扰他们支付账单或类似的东西的能力。 那是时间之窗，当人们在痴呆症中刚开始时，当他们最适合实际获得过去一年左右出现的一些新疗法时。 我一直在谈论Ramirez-Gomez博士的原因是因为她实际上在MGH经营着我们的治疗中心，实际上正在提供此类疗法，这就是为什么我想让她参与其中。
[Ramirez-Gomez]: 嗨，晚上好，感谢您在这里。 因此，正如您所听到的，我是一名神经科医生。 我是一名医生，在我的诊所和医院，马萨诸塞州综合医院照顾患者，对他们的记忆感到担忧，或者为什么我忘记这些事情或遇到某些事情困难。 那是我们的工作。 因此，实际上，我们有这些机会倾听和注意并做迈克所说的工作。 您知道，您去了这个地方，并且您听到了所有的疑虑，我们实际上进行了非常好的历史和详细的评估。 我们寻找所有这些危险信号，这是事实。 我很高兴您提出了PET扫描，Ritchie博士提到了有关血液检查和可能在不久的将来可能出现的事情的事情，因为我们真的要注意这一点，因为现在我们有可用的治疗方法，在我们早日使用时会更有帮助。 的确，我们所有这些可用性都可以进行测试，而且很多时候，作为医生，我听说过倡导。 作为病人，您说，我需要这个测试，或者我有这个问题。 我们的医生也倡导，这就是我们认为必须发生某些事情时所做的事情。 很多时候，我们甚至不得不与保险或发送信件或上诉交谈并代表您讲话，因为我们确实认为这是必要的，这将改变某人的生活，因为我们提供了特定的诊断。 有人问我们是否可以确定它是哪种类型的痴呆症，是的。 是的，我们可以达到这个细节。 而且，对于您的问题，当您说为什么可能在所有这些困难之前也没有受益时，我们参与很重要时，为什么现在很重要？ 因此，因为我们希望治疗使所有人受益。 我们想确保我们在迈克共享的数字中拥有的差异， 这些数字很重要，因为我们需要了解有什么区别，例如，治疗将如何以不同的方式影响我们每个人。 因此，我们有真正的诊所，在其中评估有色人种。 例如，我们评估说不同语言的人。 我们想真正包括每个人。 这就是Mike在F游戏开始时使用的词。
[Christine Ritchie]: Ramirez-Gomez博士谈到了真正寻求关注的重要性，另一种有趣的后门方法来获得您可能想要的那种有趣的帮助，就是自愿参加研究。 我们对参与与痴呆症有关的这些研究的了解是，这是第一名，许多人实际上正在帮助我们找到其中一些新药物的答案。 但是无论如何，您都会获得非常全面的评估。 非常全面的评估。 因此，您在此过程中学到了很多东西。 然后，另一个好处是，您就认识了人们。 他们知道您，您知道他们，那里有一段关系，如果事情出现，您更有可能有一个人，即使是研究团队的一部分，就像为您倡导您。 因此，这是一件有趣的事情，我们实际上是从大型研究中知道的，当您有实际参与研究并将其与像他们一样，不这样做的人进行比较时， 参加研究的人会做得更好。 我们想，为什么？ 这可能是因为这些其他事情。 他们正在获得更全面的评估。 有人在寻找他们。 他们发展了一种关系和联系感。 因此，这是获得支持的另一种有趣的后门方法。 我们有许多研究。 您听说迈克说了我们有42项研究。 他们并不是所有的事情，但是我们为那些对思想或记忆没有问题的人进行了研究。 我们有人民称为主观投诉。 那是他们接受测试的时候，看起来还不错，但是他们知道有些不对劲。 然后，我们对有轻度认知障碍和痴呆症的人进行了实际研究。 如果您感兴趣的话，我们想为您提供支持，因此请就此与我们联系。 Ramirez-Gomez博士，您想添加任何东西吗？
[Ramirez-Gomez]: 是的，谢谢。 好吧，既然我们正在谈论这一点，以及为什么研究，参与并与医学界感到满意，那是因为我们在乎。 就像真正的新一代，以及我们如何聚在一起以及事物的变化方式，所有这些都是正确的。 我也想分享，当我们彼此关心时，正如迈克（Mike）所提到的那样，我们关心邻居，为我们的家人关心。 我们有一个护理人员，护理伙伴的话。 我们还想邀请你们中的一些可能照顾朋友，家人。 我们还拥有要提供资源的研究。 对于护理人员，护理伙伴而言，这也是我们知道阿尔茨海默氏病和痴呆症和相关痴呆症的邀请，这并不是它仅影响有记忆力丧失或症状的人。 它影响了整个家庭，社区，邻居，他们的朋友。 因此，我们包括每个人，因为我们要确保所有人和所有与之挣扎的人的福祉得到照顾。
[SPEAKER_05]: 因此，我用温暖而模糊的方式包裹了我的部分 我要告诉你一个故事。 这是一个真实的故事。 1970年代。 我正坐在15 Rockville Park，当时穿着Gina Tay香水，当时是我一生的热爱。 我们正在您的AM表盘上听Wiod 1090。 唱片骑师是桑尼·乔·怀特（Sonny Joe White）。 一首歌叫做我所爱的那首歌，我们是第一次亲吻。 我刚刚告诉你的一切都是历史。 一切。 而且，如果我得到阿尔茨海默氏症，那时我会忘记我刚刚告诉过你的一切。 但是，如果这是一个温暖的夏日，我正坐在外面，如果一个女人穿着吉娜·泰伊（Gina Tay）的香水走路，而上帝会帮助我 因为我想让您了解的是，这种疾病从我们的大脑中窃取的东西永远不会感动我们的心。 因为爱将永远记住。 现在，我告诉你我要以温暖而模糊的方式结束它。 但是我要把它交给克里斯汀。 我们已经排队了。
[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]: 大家好。 我叫萨哈纳。 我是临床研究协调员。 我与克里斯汀（Christine）合作，我将谈论社会研究。 我会简短，因为它已经迟到了。 因此，社会研究代表支持我们的护理人员在ADR D学习中。 ADRD是阿尔茨海默氏病和相关痴呆症。 因此，我们真的在寻找痴呆症患者的无薪护理人员，并希望看到一个六周的计划如何支持他们，减轻压力并改善整体福祉。 只有六个星期，每个会议是60分钟。 它是完全虚拟的，因此您可以从任何地方，手机，平板电脑等等进行操作。 是的。 因此，如果您有兴趣，请在此之后随时与我交谈。 我们还在这里的蓝色桌子的左侧有传单。 谢谢。
[Ramirez-Gomez]: 而且我知道您现在已经坐了很长时间了，所以我会很短，但是我想再次强调并向所有人提供邀请，因为每个人都算是像您的朋友，您的邻居，您的社区一样。 您对我们很重要，我们希望每个人都被包括在内。 我再说一遍，我会继续说。 例如，我与拉丁裔社区一起工作很多。 你们所有人都是我们的社区，因此我们想邀请您参加。 基本上，您有很多信息，传单和机会。 但是我希望您不仅要知道您的数字，而且我们也想提供帮助，因为这是研究的目标。 我们不仅是为此而收集信息。 我们想有所作为。 而且，我们将通过更好地理解这些不同社区正在发生的事情来实现这一目标。 我们与今天听到的所有这些数字有何不同？ 为什么风险更高？ 这里发生了什么？ 那么，我们如何降低这种风险并使我们每个人的情况变得更好？ 因此，我当然，我与照料者，患者，健康，每个人都合作。 因此，我邀请您考虑加入我们的努力，因为我们想在这次旅程中算上所有人。
[SPEAKER_05]: 好的，所以我们实际上有一些有趣的东西。 我们有一位研究人员实际上将尝试做这件事。 该短语中的关键词是尝试。 塞思·盖尔（Seth Gale）博士将谈论我们的研究。 这就是所谓的前研究。 关于前进研究的很酷的事情是，他们正在寻找没有阿尔茨海默氏症的人。 哦。 因为您必须有一个基线。 所以我不会偷塞思的雷声。 希望来吧。 我们将尝试弄清楚。 嗯，这就是为什么我们拥有的原因，所以你知道当我们试图弄清楚这一点时，我今晚有一个特别的客人露面，我之前提到他 这是我的朋友和同事，托尼·帕姆（Tony Pham）博士，他一直在致力于非裔美国人的慢性疼痛。 他开始了一些研讨会系列。 所以就像我说的那样，我不是在偷你的雷声。 跳进这里。
[SPEAKER_06]: 我只是吞下了一些口香糖。 谢谢你。 我只是想花一点时间为这个社区中心掌声。 我会简要介绍一下，但是我真的很欣赏这些空间，因为我觉得它们对社区的健康非常重要。 正如您所看到的，正在进行许多创造性的努力，以满足未满足的需求 不同的民族种族种群，不同的疾病，不同的疾病。 因此，我与Mike Kincaid先生，诺曼（Noman），玛丽（Mary）回到那里，我实际上是想通过使社区中的人们为社区提供干预措施来将基于证据的干预措施带入社区环境中。 以不远视的价格，在文化上可以使用的方式。 因此，我们的研究在这里要提到的几项正在寻求在文化上适应思维体的干预 对于早期认知能力下降和慢性疼痛的年龄较大的黑人。 这是一件有趣的事情，因为我们称之为慢性疼痛的人们早期认知能力下降的可能性要高两倍，而这两种工作使彼此变得更糟。 因此，针对与衰老问题相关的所有事物（例如早期认知能力下降）非常重要。 为此，我们正在建立一个社区顾问委员会，从本质上将社区的专家汇集在一起，他们的经验很有经验，这些专家确定为年长的黑人美国人，他们确定患有慢性疼痛并提早认知能力下降。 从本质上讲，要提供他们的意见，以便我们可以在社区中创建这种干预措施。 因为从本质上讲，就像其他人所提到的那样，有时保险费率很高。 有时医疗保健非常难以获得。 因此，重要的是要找出创造性的方法来照顾那些需要它的人。
[SPEAKER_05]: 这是一个无耻的插头。 希望您会再次见到托尼。 我的意思是，正如我分享的那样，我喜欢这个社区健康中心。 我的意思是，老实说，当我到达这里时，我当时想，我去过这里。 但是很久以前。 是的，如果被邀请，那是一个无耻的插头，我们很想回来。 好吧，我们准备好了吗？ 你好？ 好，塞思。 你能听到我吗？ 我们可以听到你的声音。 女士们，先生们，这是塞思·盖尔（Seth Gale）博士，塞思（Seth），你要带我们回家，好吗？ 你今晚是最后一位演讲者。 好的。
[Seth Gale]: 非常好。 不过，我想确保您能听到我的声音。 你可以吗？ 是的。 好的。 这是一个很好的讨论。 对不起，我不能亲自去那里。 我一直在听所有的话。 你们有很棒的问题。 谢谢大家，今晚来。 所以我是盖尔博士，塞思·盖尔。 拉米雷斯·戈麦斯（Ramirez Gomez）在谈论她在大众（Mass General）的角色。 所以我有类似的角色。 我是Brigham和Women's的神经科医生，我们在许多事情上非常紧密地合作，包括研究和照顾患者。 我想掌握一些主题，我想谈论一个研究。 那是我想做的主要事情。 但是我们已经谈到了早期发现阿尔茨海默氏症的问题。 从迈克（Mike）的原始对话中，听众中有人谈论对宠物扫描提早识别症状的人，这是一个很大的主题。 所有这些都是针对的 试图弄清楚如果您确定早期阿尔茨海默氏病的人的大脑变化，甚至在患有症状之前，该怎么办。 那你怎么办？ 我的意思是，就像很多条件一样，您知道，您会考虑糖尿病或心脏病，目标是确定 提早更改，因此您可以尝试干预并为此做些事情。 因此，服用糖尿病，我们都想知道糖在开始产生神经病之前和开始影响视力和这种事情之前开始以某种方式改变。 因此，大脑没有什么不同。 这个想法是尝试尽早检测这些变化。 所以 但是，尚不清楚，该怎么办，对吗？ 您可以为所有真正重要的健康生活方式提供建议，我不想在所有事情上最小化诸如运动，饮食健康，进行积极的社交互动，减轻压力并获得良好的睡眠以及这些事情。 但是目前尚不清楚还能做什么。 因此，我们正在进行一项研究。 实际上，Brigham是全球约85或90个研究的一个地点。 这就是所谓的前进研究，例如前进或前进。 这项研究是针对55至80岁的人 没有任何记忆困难。 他们可能会担心记忆。
[WKpjKFdpTFg_SPEAKER_15]: 人们在笑，因为其中一些年龄超过80岁。 大于80岁。
[Seth Gale]: 他们没有资格参加这项研究。 很公平。 很公平。 但是他们可能认识一些年轻人。 好的。 我们有很多研究。 因此，实际上，我想检查一件事，因为年龄限制略有不同。 是的，我是对的。 因此是55至80。 因此，我们进行了一大堆研究，这些研究年龄为85岁。 但是这项研究的想法是您必须年满55至80岁。 您来访问，并完成了基本的内存测试。 您可能会担心记忆困难。 没关系，但是您甚至不必担心。 您可以成为一个过着自己生活的人，这对您而言，重要的是，您知道一种回馈或参与研究的方法，也许您有家族史。 这些都是可能性。 而且您已经完成了基本的内存测试。 然后进行了一次验血。 该血液测试对大脑正在散发的血液中的这类碎片进行了这些测试，可以预测血液检查中是否存在大脑中阿尔茨海默氏症的变化。 所以这是一个非常整洁的，这是一个非常整洁的 能够检测到这一点的相当新的技术进步。 因此，如果您进行了该血液检查，并且血液检查表明，如果您要在扫描中查看大脑，如果您要进入扫描仪并查看大脑，那么您将拥有我们一直在谈论的这些斑块，这些淀粉样蛋白块。 因此，这是研究的第一步。 血液检查异常，这与大脑中的斑块有关。 如果是这样的话，如果是积极的话，那么您会进来进行成像测试，该测试称为PET扫描，我们在讨论中早些时候谈论了一些，以确认这一点。 确认您的认知正常状态，因此您的记忆和思维年龄正常， 但是您有这些早期的迹象，我们称之为有点像患有老年痴呆症的状况，但是在您正确的症状之前，您并不是迈克和其他人谈论过的所有事情，您知道，您知道，混淆或忘记了尚未发生的事情。 但是，在我刚刚在本研究中描述的前两次访问中，您会发现所有这些。 然后发生的事情是，如果您在脑成像测试中有这些斑块，这被称为PET扫描，那么您将参加一项研究，这是一项为期四年的研究，它正在研究一种称为Lecanumab或Lekembe的药物。 这是您可能拥有的药物 我不知道我是否会收到反馈，但这是我们刚开始使用的药物，正如拉米雷斯·戈梅斯（Ramirez-Gomez）谈到的那样，对于早期阿尔茨海默氏病的患者而言。 因为它经历了所有研究，并且得到了FDA的批准，但我们不知道是否是这种药物 对于尚未有症状的人可能会有所帮助，但他们的大脑变化与我们之后的大脑变化相同。 因此，这实际上就像早期干预，早期的变化一样。 要回到迈克（Mike）关于参与的观点之一，那就是我们只是不知道是否没有，如果没有不同人群的参与，我们不知道不同人群的差异效果。 其中包括黑人人口。 我知道该系列专注于黑人健康。 它包括太平洋或岛民人口。 它包括西班牙裔美国人。 它包括 种族，种族界限和性行为的每个人，男人和女人。 正如迈克所暗示的那样，研究将继续进行，其想法是最大化知识 因此，像我所描述的研究的结果可以以某种方式应用于每个人。 而且，如果没有代表美国人口的公平和平等的参与和代表，那么我们就不会知道需要改变治疗或研究需要改变什么才能回答这些问题。 所以这是我的简短摘要 我们邀请人们参加的一项大型研究。 我很高兴回答有关它的任何问题，或者对此进行更多详细介绍。 我认为，迈克（Mike），要在这里开放最后一种10，15分钟之类的问题是有道理的。
[SPEAKER_05]: 那我们有什么吗？ 前进。 这是您演讲的早期。 好吧，让我让我让我。 塞思，你能听到她的声音吗？ 是的。 好，继续。
[SPEAKER_11]: 我在您之前就pet扫描进行了演讲。 当您进行PET扫描时，您正在谈论的PET扫描是否决定了您可能患有哪种类型的阿尔茨海默氏症，痴呆症？
[Seth Gale]: 这是一个很好的问题。
[SPEAKER_05]: 因此，在医生的办公室里，塞思（Seth）真的很快，对于家里的人们来说，问题是，PET扫描，它确定您有哪种类型的阿尔茨海默氏症？ 或痴呆。 或痴呆。 对不起，您有什么类型的痴呆症？
[Seth Gale]: 因此，当您参加我所描述的前研究时，我在谈论的这项特殊的PET扫描是专门寻找阿尔茨海默氏病的。 因此，这就是这些淀粉样斑块所定义的痴呆症。 但是我认为这个问题总的来说，如果您有记忆，思考或行为改变，并且您来看像我一样的医生或Ritchie博士或Ramirez-Gomez博士， 我们如何弄清楚是什么样的痴呆症来弄清楚建议是什么，并且有某种药物可以使用？ 并且有不同的信息可以帮助您。 有症状本身。 那到底发生了什么？ 这是什么样的记忆，行为或思维变化？ 它只是记忆还是解决问题或决策？ 该人是否也有这种睡眠困难，还是步行，步态或眼睛运动会发生变化？ 换句话说，这就是我们所谓的症状的类别。 因此，就像任何情况，哮喘或肺部疾病一样，您会出现一系列症状。 这不仅是我的记忆困难，而且我们会微调并弄清楚这一点。 第二个是对大脑的常规扫描。 因此，不是PET扫描，而是像MRI扫描一样。 有时，并非总是如此，但有时在MRI上有一种模式，可能与该人的症状相关。 因此，您有症状，进行MRI扫描，然后进行记忆和思考测试。 因此，不仅要记住这个词，并在两分钟后告诉我，但是更详细的测试，例如您可以复制此图像吗？ 而且，如果我向您读这段，我希望您尝试记住这些特定的事实。 因此基本上是在记忆和思维测试上的表现。 当您结合这三个信息时，您将构建一个像诊断一样的故事。 这是路易的身体痴呆症吗？ 还是这种阿尔茨海默氏病？ 还是这种额颞痴呆和其他类型的稀有痴呆症？ 我认为这就是这个问题正在遇到的问题，其中有工具可以使用。 是的，就像中风一样， 确定的诊断是100％的诊断，就像您对活检的看法一样，我们通常不为大脑做，或者您在死亡。 那是100％确定的诊断。 但这并不能阻止我们几乎在那里。 我描述了所有这些工具，尤其是在这些标记的情况下，我们在那里为95％，那里有97％。 这就是我们与所有疾病，肺炎一起做的事情， 结核病，我们有生物标志物，我们有血液检查，因此我们越来越多地弄清楚了。 但是我认为重要的是要区分我们可以拥有可行的信息，例如根据该信息对待阿尔茨海默氏症药物的某人，而没有死后的大脑，例如尸检。 您不需要有可行的治疗方法。
[SPEAKER_05]: 好吧，我在这里有一个问题。 我会重复一个问题，继续，因为麦克风不会到达那里。 我们将把麦克风带给您。 对不起，请原谅我。
[SPEAKER_15]: 我有一个...叫什么？
[o9F0qYH9Geo_SPEAKER_05]: 失语症？
[SPEAKER_15]: 当我小时候，上三年级，当我辍学回家时 我睡着了，醒了。 每个...我有...所以这是关于睡觉的问题吗？
[SPEAKER_05]: 慢慢来。
[SPEAKER_15]: 我有一个... 这里和那里。 年龄较大。 哥哥和姐妹。 不。 好的。 年龄较大。 我去学校。 我80岁。 一遍又一遍地。 是的。 无论如何，80。 我80岁。
[SPEAKER_05]: 您足够年轻，可以参加研究。
[SPEAKER_15]: 是的，是的。 嗯，嗯，嗯，嗯，嗯，呃，呃，呃，呃，呃，我，嗯，呃，
[SPEAKER_05]: 没关系。 没关系。 你知道吗？ 之后我要坚持下去，所以如果您愿意，只需抓住我，我们就会聊天。 好的？ 没关系。 好的。 所以。 哦，是吗？ 是的。 我还有另一个问题吗？ 哦，是的，我做到了。 好的。 因为它没有回到那里。 前进。 有什么问题？
[SPEAKER_00]: 如果可能的话，在年轻时有人会做些什么来减少痴呆症的机会？
[SPEAKER_05]: 塞思（Seth），对于家里的人们来说，一个问题是在他们舒适的家中观看这一点，问题是，除了年龄以外，还有其他风险因素，还有其他人可以做任何预防措施尝试并避免获得阿尔茨海默氏症或至少延迟它吗？
[Seth Gale]: 是的，肯定有。 我也很高兴也刺伤它。 我也知道Ramirez-Gomez博士也在那里。 我不希望问答我的意思，我从学习开始的内容。 让我开始，其他人可以添加。 因此，有很多可修改的危险因素，那就是从中年甚至更早地降低痴呆症风险的事情。 这包括我们谈论的一些事情。 因此，诸如进行定期体育锻炼和有氧运动，保持饮食的饮食类似，它几乎喜欢我们所说的，例如地中海风格的饮食或饮食，饱和脂肪和加工糖的饮食。 我们知道，对于那些年龄至上的人来说，如果不进行治疗时的听力困难本身就是促进记忆障碍或铅的发作或成为痴呆症的危险因素的独立风险因素。 因此，获得助听器并确保测试听力是以后可以做的。 这些只是我们知道的一些事情。 当您从40年代，50年代学习这些长期衰老研究中的人们中，我们知道这些信息。 我希望我们能早点走，甚至更早。 您可以采访人们，并真正获得有关他们在做什么样的生活方式行为，他们居住的地区的详细信息。
[SPEAKER_05]: 塞思（Seth），塞思（Seth），我准备切断您的唯一原因是因为有人没有提到任何名字，索菲（Sophie），忘了向笔记本电脑收费。 哦，我们要失去你。 电池东西刚刚弹出。 但是，我这样说，因为我们也只是时间。 首先，我想说谢谢大家的到来。 我很喜欢这个。 而且我已经与丽莎聊天了。 我们回来了。 我爱一个悬崖。 我们要回来。 我们要做的就是我不是要带一个数十亿的医生，为什么我们一次不喜欢一个或两个人喜欢一个医生，我们可以聊天。 好吧，这是代表马萨诸塞州阿尔茨海默氏病研究中心的，我想说谢谢您在星期三晚上出来。 实际上是8点钟。 前进。 莉莉安娜，你让她问这个问题吗？ 我们可以用西班牙语做到这一点。 我们可以用英语做到这一点。 而且，如果我们可以找到其他语言翻译的人，我们可以在那里做。 这就是我说的方式，是的，我们可以。 话虽如此，索菲，带我们回家。
[WKpjKFdpTFg_SPEAKER_15]: 我认为迈克已经说了。 谢谢大家出来。 我想我第一次与迈克接触时学到了很多东西。 直到现在，谢谢盖尔博士。 谢谢您，Ritchie博士，Ramirez-Gomez博士以及其他所有人。 托尼，撒哈拉博士，谢谢你的出来。 我们的下一个系列将在下个月进行黑人孕产妇健康。 是的，我们没时间了。 所以我确实为计算机充电，但是我们正在使用猫头鹰。 这就是为什么我必须插入同一端口的原因。 但是，谢谢大家，过夜。