tv Washington Journal Robert Egge CSPAN January 30, 2021 10:16pm-11:02pm EST
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officer, violates the constitution. >> the motion was tabled in a 55-45 senate vote. afterwards, the senate approved rules of the trial and adjourned until tuesday, february 9, marking the start of the impeachment trial. watch on c-span2, streamlined -- streamed live on c-span.org, or the free c-span radio app. association and executive director of alzheimer's impact movement. he's here to talk to us about the 10th anniversary of the national alzheimer's project act and about alzheimer's of america. good morning. guest: great to be here. host: let's set the stage with some basic information. what exactly is alzheimer's? guest: alzheimer's is a progressive disease. it's a disease that leads to
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death over a course of 48 years -- four to eight years. dementia refers to when you start to see the effects of memory loss. he started notice the signs of it. that is dementia. something a clinician is able to pick up. of all the causes of dementia, alzheimer's is the most common but there are others as well. host: what are the symptoms of alzheimer's? guest: there are quite a few warning signs. sometimes it is difficult to disentangle what is typical such as remembering where your keys are and what is chronic. in extreme cases you start to find you left your keys in the refrigerator, that something unusual. what we say is you should be
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talking to your health care provider if you have concerns about this. it's an important conversation to have. when you start to see things different. often you may not recognize it but your loved ones a good friends could notice it. pay attention to early warning signs. be sure you talk about it with your health care provider. host: who is at most risk with alzheimer's right now? guest: fundamentally the most important factor is age. that has long been known. it is as true today as it has ever been. the older you are, the higher risk of dementia. there are other factors with elevated risk. african-americans are about twice as likely to have alzheimer's than whites. for hispanics, about 1.5 times more likely. the first dominant risk factor is a.
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there are about 200,000 americans under age 65 with alzheimer's disease. did affects young and old alike. host: how many people right now suffer from old-timers in america -- alzheimer's in america? is there a difference between dimension and alzheimer's? guest: to answer the first question, there are more than 5 million americans with alzheimer's. about 70% of dementia is caused by alzheimer's. what is dementia? dementia is when you start to see the memory loss associated with alzheimer's and other causes. it can be caused by strokes and other factors as well. host: right now it is projected
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about 13 million people ages 65 and older will be affected by alzheimer's by 2050. are we ready to take care that population in america? guest: no, we are not. that is one of the most alarming facts about alzheimer's. it will progress rapidly unless we have a means to treat and slow its progression. right now the course is alarming to be sure. today alzheimer's is having a massive impact. if you look at 2050, it is all the more sobering and alarming, our need to act. there is good news. we are at a much better place than several years ago. there is much to be done. we're still waiting for the first fundamental treatment. there are some treatment for symptoms of alzheimer's and we are thankful for them. they don't change the underlying progression of the disease. that is what we need to have in our hands to make a difference.
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host: what impact has the coronavirus pandemic had on the treatment of all timers, whether it is the moving funding away, making the care of people with alzheimer's more difficult. what kind of impact has the pandemic had on people who suffer from this disease? guest: it's been a terribly difficult year for those with alzheimer's and dementias, especially because of covid. without covid, it is so difficult. with covid, that much harder. there are several reasons. the most fundamental is for those with alzheimer's and dementia, which is 70% of the 5 million i mentioned, we know how much harder it is to get the medical care you need for not just your alzheimer's but other conditions as well. they also have other chronic
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conditions. in addition to that, by the time you get to age 80, 75% of those with alzheimer's are nursing homes. long-term care settings have been hit especially hard. we all know this now. over a third of deaths have been with those in long-term care settings. that has been the fundamental part. it is not just the fact that when you're in these nursing homes you are more likely to contract the disease because of the close quarters and the congregating care that make infection control difficult. beyond that, another at a has been the isolation that so many face where they can't see their loved ones. that is difficult for anybody. we all face degrees of that through the pandemic. especially for those with cognitive impairment, how much
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more difficult it is when you don't understand why you cannot see those who you love. you can't quite grasp the reason for it. we have the utmost urgency to make sure we defeat the pandemic as well as alzheimer's and make sure we can restore those in long-term care settings. host: i want to remind viewers they can join in on this conversation. we will open up regional lines for this conversation. if you are in the eastern or central time zones, you can call in at (202) 748-8000. if you are in the mountain or pacific time zones, (202) 748-8001. if you have personal experience with alzheimer's, we want to hear your story. we will open up a special line for those with experience with alzheimer's.
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that line will be (202) 748-8002 . keep in mind you can always text us at (202) 748-8003. we are always reading on social media, on twitter and on facebook. now, robert, this is the 10th anniversary of the national alzheimer's project act. tell us exactly what that is and tell us the goal of effectively preventing and treating alzheimer's by 2025, which was in that act, is still possible. guest: thank you for asking that question. several years back, prior to 10 years ago, we recognized in the community how little is being done at the federal level. we experienced that as a community the lack of urgency.
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the facts went that different 10 years ago, but it was very alarming and concerning then. despite that, the federal government wasn't responding in a way that we would hope. for instance, there has been no increase in alzheimer's research funding for decades. the same is true when we talked about care and what people experienced. there was no real focused conversation in the united states about what needed to be done to improve the care situation for these americans. it wasn't that we weren't asking . we have people coming to washington, d.c. every year talking to members of congress, but the answer was always the
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same, it was fundamental concern but also a sense that they couldn't do anything about this. so 10 years ago, we created a bill and we had to have some patience when we did this, because we recognized that for a moment we had to take a step back and lay out the fundamentals of what needed to be done and how the consensus in congress and a bipartisan basin -- basis about the fact that we are not doing enough and there are important steps we need to take immediately. that is when we went to congress and they said, to their credit, yes, this makes sense, we can do this. the bill asks -- require the federal government to create for a first time a unified national plan to address alzheimer's and
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other dimensions. it was passed by congress and put into law this month. and what remarkable progress that has been. host: the wall street journal has a story in today's paper about the new drug in front of the fda. i once read a couple paragraphs. they said there alzheimer's drug candidate will go in additional three months of review by the u.s. food and drug administration after a panel of experts voted the agency shouldn't improve -- approve the drug. the stakes are high for biogen. the company could have the best-selling drugs in the world fueling growth to come.
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the drug is a monoclonal antibody derived from the cell from no patients with cognitive design. it is designed to clear from the brain what is thought to contribute to alzheimer's disease. what does the possibility of this drug being approved by the fda mean for this community? guest: it would be a very important step. it would represent the first drug approved on the basis on the fact that this drug would address the underlying disease itself and so the progression of the disease. that said, the degree of slowing would be incremental, perhaps on the order of a 20% slowdown. the question you might ask is,
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well, does that really make a difference? the reason why we leave this drug should be approved is not because of biogen or any other country -- company, but as a science-based organization we believe the science is sound for approval. we do think it would need continued study after approval, certainly, but the other part that way so heavily is what our constituents think about this. on that basis, with credit to the fda, they need an extra meeting to listen to advocates of those with the disease whom play -- you explain just how important that degree of slowdown and what it would mean for their ability to interact with loved ones and have greater independence than they would have other had. it would mean the world to them.
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based on the science and our community, we think it should be approved. we are appreciative of the fda for taking a long science-based look to whatever decision they expect down the road. let's let some of our viewers take part in this conversation. let's call from dan -- let's take a call from dan in hot springs. caller: i'm having a difficult time right now. guest: i'm sorry to hear that. caller: my wife struggles with it. this started back in probably
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2010 or 2011 when i started noticing things. i did not want to acknowledge that this could be happening, although i have seen it before in her family and her dad. i'll just hang up. guest: that is very difficult. no one wants to acknowledge this. i am thankful that you have in terms of what is going on. it does not make it easy, it is so difficult, but it is helpful to recognize this and go for help. there is a 24 hour a day, seven day a week, 365 day a year free helpline that people can call and qualified people are there.
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the toll-free number is1 0800-272-3900. we -- 1-800-272-3900. it is a difficult road. right now, the reality for people like the color we just heard from is similar to what it was 10 years ago. we still are waiting for the first new treatments that are going to fundamentally change this disease. for diseases like heart and cancer, where we see heading in a better direction, not so with alzheimer's. host: one thing the caller
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noticed was that he knew the wife's family had alzheimer's as well. looking at the website, they say the greatest risk factors for late onset alzheimer's are older age, genetics, and having a family history. sober people who have a family history of alzheimer's -- so for people who have a family history of alzheimer's, what should they do to make sure they are either prepared or can prevent the disease from happening to them as they get older? host: right now, the most important thing, and i want to say at the outset, a lot of americans have dementia and alzheimer's in the family. it is very common. it is very important to be vigilant, especially if it is prevalent in your family, but also to understand that some of parents who have alzheimer's or
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siblings don't themselves develop it but it is a risk. it is important as you age to be very important to listen to family members. nobody wants to hear this say it to someone else with conversations are important. under medicare, there are annual wellness visits and you should expect once a year that your condition -- clinician will work with you and help you assess whether you have any early detection or warning signs. and you have that, -- that conversation with them once a year. if there are concerns, it should lead immediately to a thorough workup of what is going on.
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sometimes it can because by reversible conditions that you might face. it could be caused by sleep problems or depression, but quite often it can be a sign of dementia and the -- and it should be taken seriously. host: that's go to john in springfield, missouri. good morning. caller: good morning. my wife is 72 years old and came down with dementia after 50 years of being married. i put her in a nursing home. there she ended up with the coronavirus. they stuck her in a room by herself and left her there and she passed away. i feel that they should have sent her to the hospital. talking about family members, my mother away passed away from it. my sister-in-law, two years
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older than my wife, is in a mental hospital because of alzheimer's. both of them got angry, mean, they want themselves. they hit, they threw things at the family and everything. my wife didn't come down to that because of the coronavirus, but them sticking her in a room by herself with three other people died the same date from the coronavirus and everything, don't you feel that they needed to -- she needed to be sent to a hospital? a bit there was a chance she could have lived? guest: first of all, i am so sorry to hear that story of what happened. it is heartbreaking and all too common this past year. i don't know the words for it.
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the statistics bear it out but that is a cold way to look at it. it is hard to hear but they cue for sharing that story. i don't know the circumstances particularly with your wife, so from what i under stand don't want to guess at what the appropriate decision was, but absolutely we need to find the best way to care for those. i will say we strongly support public health experts and are looking at all populations, including those with dementia, vaccinations as soon as those are available. the federal government has prioritized the community and stick with it. that is fundamental. there have been difficult circumstances across the board. for those of our health care
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workers, and for those in nursing homes, it has been so difficult for workers as well. i recently learned that those who are nursing home workers is the most hazardous job in the country. this workforce is not well supported and this is not my way of bashing the owners of nursing homes either. they do a lot to create the best they can for those under their care, but the system across the board, there may be certain situations where we will see things that lead us to be very angry about what happened, but by and large that has been a pandemic that has taken everyone by surprise and pushed already fragile systems to the breaking point your story illustrates that.
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host: let's talk to marcy who is calling from jarrett's phil, maryland. -- from maryland. caller: thank you for taking my call to let me share my story with you. my husband was diagnosed at 55 with early onset, and this is one of those topics we talked very little about. i know early onset is 65 and under, but at 55, you are not prepared. we don't have support you would have if you were older. at the time he was diagnosed, it took two years to get a diagnosis. and at that time we went through most of our savings account. when he got his diagnosis my daughter was in high school and we were talking about college and i was going to alzheimer's support groups. it was very confusing. my question is -- what is your organization doing today to address the complications that
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occur when someone so young and so ill-prepared and society is not prepared to help those of us who are in that situation. i know we are a small minority in this, and the problem is when we try to speak up and i have attempted to go to the state of maryland to talk to congress, no one wants to talk to us because we do represent such a small population, but it is very difficult because i am trying to be a caretaker. once again, being so young, we don't have the grown children or the friends who are retired that can come over and sit with him. my husband lost his driving ability also at the time he was diagnosed. so if you could just share what your organization is trying to do to help the early onset, i would be very grateful. and once again, thank you for all you do. guest: that is kind of you to say. i am so sorry to hear your story.
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if it were just the disease on its own, in some ways it would have our nation's attention more for that group. it is a significant portion of our country that is younger with alzheimer's. . they are so often neglected. one thing that we did is an organization, now that there is a mandate to create the first plan is that we had listening sessions over the country, over 100 of them, to create that first national plan. one thing we heard was the issue you highlighted, and that has been a focus of ours. i used terms like good news and i temper them with what i said. we understand that good news right now is a relative term for
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those struggling with this disease. good news that this past congress in part because of the plan and because of agnes -- because of advocacy of people like you, it included the younger onset alzheimer's act and that is now law and there are provisions. they make available services to those who are younger with early onset as you described that have long been available to those who are older. this might be shocking to people, but there are services that you can get if you are older and develop alzheimer's but even more circumstances as the breadwinner of the family and couldn't work. we would all say that is a place we should especially focus, so
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why were they left out? the answer is not a story with villains but the way things evolved and we developed a lot of services early on for those with dementia. the overall structure we have in our country to support has 60 and over. it makes the same services that can be very helpful to those who are under 60. we are working hard now. this is law. it makes a difference to families like yours. host: we have a social media follower who wants to know if alzheimer's has anything to do with the activity by the education of people? the question is -- is it true with people with little education and non-brain challenging lives are more at risk for alzheimer's? it doesn't have -- it doesn't have anything to do with that?
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guest: there seems to be a robust body of evidence that your education, especially early in life perhaps, does have a strong bearing -- a significant bearing on your risk of developing dementia, alzheimer's to be specific, later in life. we see strong hints of that and much research has been conducted . we are less clear about the significance of things you might do now. there are many important things you can do that would be worthwhile to lower your risk at any age for alzheimer's or its progression. if brain activity later in life has the same impact early in life, but we do see that linkage. one we urge thing -- people to do is just general common sense. exercise we know is helpful.
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we may not know the degree, but it is a good thing to do for many conditions. eating healthy is certainly another one. we encourage people based on scientific evidence that is emerging but not yet fully confirmed but certainly to say -- estate socially engaged, whether it is by phone, resume, however you can. things like that are important to do. host: let's talk to mark, who is calling from norfolk, junior. good morning -- or folk, virginia. -- norfork, virginia. caller: my mom for the last three years of her life had dementia. the last social media question was is there anything you can do . what i have surprisingly seen is that those who play bridge for
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any amount of time consistently seemed to have been able to maintain their mental faculties. i don't know the studies between the link of laying bridge and alzheimer's and dementia -- of playing bridge and alzheimer's and dementia and that might be something to look at. i have a friend of mine in north carolina who has a doctor's degree in chinese medicine and so that becomes a whole another political name as far as -- vein as far as eastern medicine versus western medicine. and it is shown that the psychedelics are now being studied. they had a story on real sports on to players who had cte and
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they went to peru and they took some cocktails of psychedelics and basically what happened is it wound up rewiring their brain. they went from having constant headaches every day, suicidal thoughts, and it rewired. so i would just like to ask your guest -- has there been any discussion of psychedelics that could maybe have an effect on dementia and alzheimer's? guest: thanks for your question. the thing about bridge is if you enjoyed, that much better. it does connect. i don't think it has been studied to my knowledge and i wouldn't speculate about impact in any specific way, but we note social engagement is important and mental engagement can't
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hurt. i think it is great for people who are able to do that to enjoy activities that with others. in terms of the eastern medicine , i don't have anything to add on that front. i am just not aware of any research specifically on that that i could cite one weight or the other. but it is a good opportunity to talk more generally about research. one of the things we saw with the national alzheimer's project is that researchers stagnate at a shockingly low level. less than $590 a year for a disease that affects 5 million people and is terminal -- 500 million dollars a year for a disease that affects 5 million people and is terminal. over $3 billion per year and it is where these days to hear
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something nice about congress, but on a bipartisan basis, i have only great things to say about congress. they were able to work to increase reach search funding -- increase research funding. it is important because there are many hypotheses that bear detailed study. when you have a little bit of funding, you can only focus in one area when you know full well that other areas could hold the key. because of this increase in funding, thanks to bipartisan senate and house, we are in a much better place. still, $3 billion per year is not enough, in our view, when talking about that, but it is such a difference. our direct costs of alzheimer's dementia is over $300 billion a year. that doesn't count for care vision -- caregiver investment.
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now we are investing in research about 1% of what it costs our country each year in direct costs. that is closer to where we need to be but we are not there yet. we are very thankful to congress for the steps they have taken. it is a dramatic difference from 10 years ago. host: what do you expect of the new biden administration and what do you expect avenue congress when it comes to policy and funding for alzheimer's research? guest: we are hopeful and looking forward to working with the biden administration, as we do with every administration and eager to do so. we are hopeful. we know as vice president biden then and now president biden appreciates how important medical research is to progress
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on diseases like alzheimer's. we are appreciative of the opportunity to have advocates on the campaign trail and that he made mention of it throughout the address to the country how important the disease of alzheimer's is to our country. when it comes to congress, we have always been especially focused on congress, here in washington and with advocates across the country and we have done so with 535 member base. that is the number of house members there are and we talk to each and everyone as often as we can to make sure they understand what needs to be done. we have seen important progress. i mentioned the alzheimer's act from a few months ago and the increase in research funding but there have been other improvements as well, the agenda
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for alzheimer's dementia needs to be at the top of their agenda. the need is so great. i say that recognizing this new congress faces probably more pressing issues than we can remember in some time. even more so today. we are sympathetic with that, but that does not change the fact that we have major things that we need to do. we need to increase research funding for alzheimer's dementia . we also face our care system in a way that i think on a bipartisan basis members of congress agree. when you have alzheimer's dementia, i'm sure many of the colors have lived through, he face a difficult situation, even getting diagnosed. if you're able to do that, which happens all too rarely, then trying to find your way through
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this maze of services that you try to patch together is overwhelming. that is the reason why i stressed our 800-number. it is one service outside of government to help you navigate. but that shouldn't be necessary for those services. we should have a system that when you have this disease or you care for someone who does, you can patch more easily the care you need. one thing that i will mention that is a help to people is that now because of our advocacy, there is a care funding benefit paid you can go to your doctor and they can help assist you with thorough care planning as often as you need it to make sure you have a plan that recognizes what your needs are and is one step towards putting things together that you need.
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nevertheless, in this new congress, we will ask them to take next step in developing what is necessary, copperheads of system of care that meets the needs of those alzheimer's or dementia and it doesn't exist today. host: let's start with peter calling from melbourne, florida. good morning. caller: good morning, sir, how are you doing? guest: good, thanks. caller: good morning, how are you doing? guest: i am doing well. thank you for calling. caller: i am taking care of my mother and she has dementia. one time when she drove off she got to the intersection and did not know if she should go left or right and she told me about
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it and we discussed it. my grandmother had a similar problem. i was there for my mom. she became childlike and frustrated because was like she wasn't in control of what was going on. it was like she was losing -- i say every once in while she was losing another card from the deck. it made her very uncomfortable. but anyway, i hung around in my brother helped out. it is a learning lesson. this happened 20 years ago. i have a sister who has dementia. i've got the beginning traits of it. i am 70. i just wanted to share it with the people that come it is like
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they get childlike. they don't understand what is going on. guest: thank you. that is so true. and thank you to those who are providing care. that is what makes it work. people are much better off because of you offering your time. you raise a good point. i think we see behavioral changes, and i am not speaking as a doctor but just for my understanding, for two reasons. one, it is frustrating. you can imagine. what a frustrating experience to
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lose your independence and to not be able to do much about it. that would make me quite frustrated at times i know. in addition to that, sometimes the disease can change the brain as the disease takes hold and that can lead to changes in behavior that are quite unlike what you've seen from that person, fits of anger and other factors. of course, it is not their fault and it is a disease that can change the way people behave. i am glad you pointed those things out. it gives us that much more understanding and empathy for those going through this terrible disease and providing support that we can on this journey. host: let's take one more collar, marianne from fairhaven, new jersey. the morning. caller: hello. my name is marianne. my husband has been diagnosed with lewy body dementia.
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i have a movement disorder and i am his main caretaker. we don't have a lot of help, but my husband is progressing pretty fast. he has become very depressed. he sobs a lot. he shuffles when he walks. it is hard to understand him sometimes. he is very confused. the psychiatrist that gives him medication, he has been on several but they haven't worked. and he is suggesting that he have shock treatment. he has told me that this sometimes not only improves the
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depression but helps the lewy body disease. i wonder if you could address that. guest: again, your call just captures why this is so pressing for our country. thank you for being willing to share that story. so sorry you are living through that. i am not qualified to speak on shock therapy. i would mention again the 800 number that you can call to talk through these issues with trained people ready to help. it can help you sort through those things. you are talking to a health-care professional which is the most important you can do. and i just want to say thank you for illustrating how important this topic is. policymakers need to hear from all of us and you can do it from
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home at the state or federal level and you would do a great service to everyone. want to make sure that we reach a better system of care in the treatment for lewy body, alzheimer's, and other dementias. we would like to thank robert egge: who is the chief public policy of her for the alzheimer's association for being here. thank you so much for coming >> of the senate considers more of president biden's cabinet nominations. confirmation vote is set for homeland security secretary. tuesday, senators vote on confirming pooh-poohed judge to have the transportation department.
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other possible nominations include veterans affairs and commerce. the house needs monday at 3 p.m. eastern for a pro forma source and. members are planning to take up a budget resolution and covid-19 relief legislation. two items the senate may also consider. watch the house live on c-span and the senate on c-span2. >> next, representatives to be dingell and tom reed discuss the january 6 attack on the u.s. capitol and the house moving forward with imputing donald trump for the second time. they also talked about the possibility of a bipartisan of the structure bill. this is from the economic club of washington dc. you very much, and welcome to our 13th virtual signature events of our 35th season. i wanted to thank all of you for joining us, we have with this todaynd
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