Transcripts For CSPAN Maria Shriver Warns NIH Funding Cuts Could Harm Alzheimers Research 20170424

This hearing will come to order. First of all, thank you for that wonderful welcome which i know was for Maria Shriver, but we senators will pretend that it was also for us. [applause] good afternoon to all of you. I am delighted to convene this annual hearing to assess the art of alzheimers from venting cognitive decline to assuring quality care for those living with dementia. It is also it is always inspiring to sit here and look , butt that sea of purple it is also a reminder that this terrible disease has affected each and every one of you in a personal way. Years, i have met family members who have sacrificed so much to care for their loved ones living with this disease. I have met americans living with alzheimers with determination. Many of you are here today and we welcome you. Okeefes ago, i met bob. Alzheimers ran in his family. His father and older brother both had it. Ob decided to get tested early he received his diagnosis in 2009 and immediately he became a fighter. He walks daily and breeds a couple of books a week. Inorganizes support groups his small, rural community. Daysld me that there are that are overwhelming, but he stressed, never quit. Every day is a new day. Today we should ask, what can we . O to help people like bob giffin of rapidly aging population, we cannot afford to do nothing. Alzheimers is a devastating disease that exacts a tremendous personal and economic told on the individual, families, and our health care system. Approximately 5. 5 million americans are living with the 27,000 in myluding state of maine. As ourmber is soaring overall population grows older and lives longer. Continue, trends alzheimers could affect as many as 14 million americans by the year 2050. In addition to the human suffering it causes, alzheimers nations costliest disease. The United States spends more than 259 billion per year, 170 5 billion in costs to the medicare and medicaid programs. It is the only one of our nations most deadly diseases without an effective means of , treatment, or a cure. If we do nothing, the Alzheimers Association forecasts that this disease will cost our country and astonishing 1. 1 trillion by 2050, and it will bankrupt the medicaid and medicare programs. That we are news is making progress. In 2011, the national alzheimers project act, which i coauthored with then senator became law. It created a National Plan to combat alzheimers that is updated annually. It focuses our efforts to towardste progress better treatments and means of prevention, and ultimately a cure. In the biomedical world of research, we are also making progress. Scientists are conducting prevention Clinical Trials that never would have been possible, even a few years ago, and i have had the great privilege of visiting with some of the Research Scientists who were on the cutting edge of doing Clinical Trials and laboratory work, and it is exciting. Senator casey, i went to the university of pennsylvania, which is doing tremendous work, and i am proud of the work that laboratories in my state is doing, harvard, and the list goes on and on. Today through advances in imaging technologies, we are able to identify some of those who are most at risk for alzheimers and test interventions before symptoms develop. Although we do not yet know how to prevent alzheimers, we are advancing in our understanding of the disease. Its progression does not happen overnight. It is preceded by years and perhaps even decades of changes ofthe brain and a continuum changes in behavior, including cognitive decline. A growing body of evidence, even suggests that lifestyle factors could decrease the risks of cognitive decline. Today, we will learn about the state of the research on factors such as cardiovascular risks, physical activity, diet, sleep, social engagement, and cognitive training. If we start today, i Public Health approach to improve rain health may well be possible. For those living with the disease today and given the rising projections for the future, we need to ask, are we equipped to provide the best care across various settings . From homes to hospitals, we know that the number of geriatricians falls short of the growing demand. We know that for those living in rural areas such as in my state respite care is far to scare us. We will discuss innovative approaches to delivering dementia training to Healthcare Providers across the spectrum, from primary care physicians and nurses to social workers and Community Health workers. And family caregivers are especially important as part of this picture. Last year, more than 15 million americans provided eight teen billion hours of unpaid care to family members and friends with alzheimers. Than 230lued at more billion. We will shine a light on how to better support these efforts. C of i look at the alzheimers, i recognize both the progress we have made and how far we still have to go. Inhave come along way advancing research through more robust funding. Last congress, we increased funding for Alzheimers Research by 60 to almost 1 billion. The fiscal year 2017 appropriations as reported by the Appropriations Committee on which i serve would take us to nearly 1. 4 billion. Now why are those figures important . Well, the experts have calculated that we need to invest 2 billion a year in Research Funding to achieve our goal. We certainly cannot afford to go backwards at a time of such , and urgency and progress that is why i so strongly oppose plans toistrations slash funding for the National Institute for health. That is the last thing we should do. [applause] i want to thank all of our witnesses for joining us today. Eachecially want to thank and every one of you who have traveled from your home states to be with us. Some of you remember from last year that i wore this same purple suit because it is the color we are all using today. ,his suit is like 15 years old and i really want to retire it, but i have made this pledge that until we have an effective treatment, this suit stays in my closet. [applause] so, senator casey, i am delighted to recognize you for your Opening Statement. Sen. Collins thank you very much, and for saying some things that elicit some applause for that does not happen often in hearings. I want to thank you for calling this hearing and your dedication on this issue. It is a topic that touches everyone in this room one way or another, some more directly obviously when it is a family member, but whether it is a parent or grandparent, sibling, youd, or even a neighbor know what this fight is all about. Our Witnesses Today come to us in that fight as well from all across the country. And i know that a little bit later i will have the opportunity to introduce Phyllis Gallagher from pennsylvania, not far from my hometown of scranton, and we appreciate her being here today. Phyllis cared for her husband john who began showing signs of early onset alzheimers at 49, and we are grateful she is willing to do that today to provide the testimony. It is also an honor to have Maria Shriver with us here today. And to help raise awareness situations families face, like her and the gallagher family. Alzheimers disease severely impacts the lives of those who are diagnosed with it, and the lives of those who care for them. This, in one state, pennsylvania, 270,000 people aged 65 and older currently live with alzheimers. Providing much of the care for these individuals is an enormous, but often unseen army of caregivers, including friends, families, and neighbors just as senator collins alluded to earlier. In my home state of pennsylvania, an estimated 673,000 people provided unpaid care to a person with alzheimers related dementia just in 2016, so 270,000 People Living with alzheimers, and 673,000 providing assistance. So those numbers will only grow, not only in a state like ours, but in states across the country. So that is why we are here today to talk about how we can slow down this disease and ensure those who develop the disease itself received the best medical best support possible. Scientific research is providing us with new insights into how we can better control the impacts of alzheimers disease. For example, we are discovering that physical activity can prepare our brains to fight back against alzheimers and to potentially delay the onset of symptoms. Increasingly we are hearing the experts tell us what is good for your heart is good for your brain. We must continue to support research and the quest for s that can help us prevent the onset of the disease in one day develop a cure. Until that time, we must focus on making sure that those who are already living with the disease can get the best care possible. This requires that we have a Health Care Workforce properly trained to address the unique needs of individuals with dementia. This must include care providers across a continuum of care, from primary care providers to nurse practitioners, two of course direct care workers. We must also grow the number of doctors specializing in Health Issues that affect Older Americans more broadly. Ineone living a farm inia or pennsylvania must both have access to care when they need it. Will not be enough though if we dont also engaged the largest component of our caregiving workforce, our family caregivers, as senator collins reminded us. Caring for a loved one is emotionally, physically, and financially draining. We know that. We also know that family caregivers require our support and need to be provided the resources they need to properly care for both their loved ones and themselves. As experts tell us, we have made progress in all of these areas, research, workforce, and fargiving, but our work is from over, and in some cases, it is just beginning. Collins justnator told us, funding, funding is critical, and i join her in that disagreement i will even add them in titian or condemnation of any Budget Proposal that nih the way the Budget Proposal does. [applause] have not madeg we progress on funding. Lester, we had a breakthrough. Our great bipartisan moment which guarantee to did not get a lot of coverage, but a great moment. [laughter] at to that time, we moved in the right direction in terms of funding. This Budget Proposal would be a backwards, orstep more than one step, so i am pleased to join her in that effort. I am also committed to helping us get to the point where we are getting closer and closer to the 2 billion funding targets that experts tell us we need. Over the past several years, with the hope help of so many people in this room, we have made Real Progress in funding, but we have a long way to go. Let me just wrap up with this one message. In addition to focusing on these priorities, we have to make sure that this stays in front of the American People on a regular basis and the leaders here in the senate and the house. We cant look at the faces in this audience, people who have come here year after year, and the pain and the heartbreak so many have suffered with regards to this terrible disease and not insist that more has to be done. We need to keep investing in science, keep supporting Clinical Trials and keep supporting families. That is why this gathering today so essential for parents patients and for families. Welle just conclude as with a preference to two programs i think are critical to this, medicaid and medicare. That was effort undertaken must recently, which in my judgment would have heard medicaid terribly. We have to make sure that we stop efforts that are headed in that direction. We have to step up the fight against alzheimers, if anything , and increased the pace and intensity we bring to this issue. I am grateful you are all here on thursday and we are grateful for your continuing commitment and grateful for the witnesss testimony as well as our chair getting us together today. Thank you, chairman collins. [applause] thank you very much. Thent to acknowledge presence of many of my colleagues who are here today, senator fischer, sender gillibrand, and i know senator warren will be back as well, and i suspect we will be joined by others. I am now delighted to introduce our first witness, Maria Shriver. Mrs. Shriver is a journalist and the founder of the Womens Alzheimers Movement. Mrs. Shriver is a champion in fighting alzheimers disease. She founded the Womens Alzheimers Movement to advance twoarch and to find out why out of three brains that developed this disease belong to women. She has kicked off the move for mines, a partnership to raise money for research and praise awareness about Lifestyle Changes that one can make to promote brain health. Shriver, i so remember your 2009. Us testimony here in you testified so poignantly about the story of your father, and i will never forget youre telling me that when he could no longer remember the names of his loved ones, he could still recite the hail mary, and that was such a poignant moment in your testimony. I also want to acknowledge that your daughter christine is here today, and we are delighted to have her as well. Thank you for all your work, and please proceed with your testimony. Andshriver good afternoon thank you chairman collins, Ranking Member casey and members of the committee for inviting me here today. It is an honor to be here with so many extraordinary people. Every Single Person behind the could be testifying and tell an i amdible story, so honored to be here speaking on behalf of all of these incredible people. As chairman collins mentioned and as some of you may know, i have in here before. Exact. Ears ago to be in march 2009, i sat here and testified about how alzheimers had taken up residence in what had been my fathers beautiful brain. Father Sargent Shriver was an idealistic, intelligent, optimistic, and dedicated public servant. He is mind was as sharp as they, a beautifully tuned instrument that left people in we and inspired. He was an expert at sharing his general passions with the public, thought leaders, and people like yourself. L toften came to the hil advocate for funding on the peace corps and the programs he created, including headstart, this took him a job corps, and Legal Services for the poor. He loves working this building and was really good at it and he knew every senator and congressman by name, and if he were here today, he would know every single thing about each and every one of you, about your careers, your interests, your politics, your families, and yes, your soft spots. He would know a lot about that. So imagine how painful it was to watch when this walking encyclopedia of a man went from knowing every fact about everything that had ever happened in the history of this country to not knowing what a spoon or fork was, to not knowing what my name was or not knowing his own name. I testified, my father died of alzheimers disease, and now i am back. I am back again to testify, back alarm aboutnd a 911 the biggest biomedical crisis facing the world today. I say it is a world crisis. Back again to focus your brains on this killer ravaging brains and families across this great country of ours. Believe me, i wish i did not have to come back here to testify. It wasnt on my calendar, but when i learned the funding for nih and Alzheimers Research might be in jeopardy, i practically ran here to say, this cannot be. Wait a minute, there must be some mistake here. I know that this committee is well aware of this crisis unfolding in homes across this country. I know you know about it first hand, and i know you know about it from the people you represent, but let me use this moment to remind you here on the committee and the American Public just what the uptodate facts really are, and trust me, these are real facts. Every 66 seconds, another brain will develop alzheimers disease , and two thirds of those brains along to women, two thirds of them, and no one knows why that is. Isoman in her early 60s twice as likely to get alzheimers in her lifetime than she is to get breast cancer, and the statistics are even more alarming for women of color. African american women are twice as likely to develop alzheimers has caucasian women, and latinas, 1. 5 times more likely. On top of that, more than 15 million americans are caring for someone with alzheimers or other forms of dementia while parenting and holding down fulltime jobs, and just as you know, two thirds of those caregivers are also women. Founded theis why i Womens Alzheimers Movement to educate all of us about the disproportionate effects of this disease on women. I believe that determining why women are more affected by alzheimers will help us unlock some of the mysteries of this diso of the mysteries of this disease. Instead of focusing only on the formation of black and tangles in the brain, lets focus on womens brains and their bodies, on their chromosomes, their hormones, and on the way they process information. This could help us learn more about alzheimers progression and its prevention. In fact, i believe studying women and getting more women into Clinical Trials could possibly lead to the cure for all of us. I dont believe this is sexist. I believe it is just plain old smart. It is smart. Thank you. [applause] it is smart because alzheimers is the most complex, esthers and expensive disease in the United States, more expensive than Heart Disease and cancer, and it is the only one of the top 10 diseases without a means to prevent, cure, or slow its progress. Number, since 2000, the of deaths from breast cancer, prostate cancer, Heart Disease, and stroke are all down, but alzheimers deaths are up, by a breathtaking 89 . It is bankrupting families and on its way to bankrupting this country. This year, if you add families out of pocket expenses to the money medicare and medicaid will be spending on alzheimers, the projected total will drain the ifnomy of 259 billion, and i government does nothing, the costs are projected to explode to an astounding 1. 1 trillion. I hope we can sit for a minute with those incredible, astounding figures. I want to take a moment to thank you, chairman collins for introducing a bipartisan resolution declaring that achieving the primary goal of the National Plan to prevent and effectively treat alzheimers disease by 2025 is indeed an urgent, and i say urgent, National Priority because right now it is the most seriously underfunded disease in our country. When everyime alzheimers scientist will tell you that we are at a critical and potentially groundbreaking moment in the history of the research of this disease. So much extraordinary progress has been made, but now it has stalled. The only thing many of them say keeping us from pressing on to find a cure is the federal funding to move us forward. At instance, my friend harvard, one of the scientists at the womens alzheimers fund actually funds is a top researcher who discovered the first gene for the disease 35 years ago, and his lab has found two dozen more in the last decade. He says that we have learned from studying these genes important clues about what needs to be done to prevent alzheimers a decade or so before any symptoms arise, but he said laboratory Budget Constraints mean researchers like him are able to follow up of the new about 10 clues and information that is available, and that is just one lab. The United States government is better than this. We are letting down those who have this disease, the millions who are caring for them 24 7, and it is a 24 7 job, and the millions who will get alzheimers disease and other forms of dementia as we the baby boomers and our millennial kids continue to grow older. Right now, 10,000 people are turning 65 every day. Remember i said brains develop alzheimers disease every 66 seconds. By 2050, someone in the United States would develop alzheimers every 33 seconds, every 33 seconds. And our health care system. [ applause ] we have tohriver fund it at the level that we funded aids and cancer. Because, this absolutely, this is an equal opportunity crisis, a tsunami that can crash into any and all of us. And make no mistake, without a federal commitment, as you have spoken about, we are going to lose this fight. Over the years, i have racked my own brain wondering why alzheimers does not get funded at the level of these other diseases. I have asked myself is it not being marketed properly . Is it not sexy enough . Hip enough . I wonder if we think it is just the normal part of aging which of course, it is not. Or come is it that our country is so obsessed with youth and none of us want to grow old. Regarding sexism. It disproportionally affects women. Amy that is why it is not getting funded. Isnt it just because women live longer . That is not why women are getting it. What is it, i thought to myself. Deep in our hearts, are we also terrified of losing our own minds that we just want to push this disease out of the field of vision or deny that it exists at all . The truth is, we cannot deny it away anymore. Alzheimers is everywhere and it can develop in your brain for 20 years before a single symptom ever shows up telling you that you have it. And what does that mean . It means that the chances are that several of us sitting in this room right here, today, have it right now and we do not even know it. Think about that for just a minute. Imagine, one of you up there, imagine turning to someone that you served with in this august aday for years and not knowing who they are. Imagine, looking at the person in your home to home you have loved it for decades and you cannot remember their name. Imagine, your family being unable to care for you physically, financially, emotionally, or spiritually. Imagine, imagine that scenario. Millions of americans do not have to imagine it. Probably, most of the people in this room did not have to imagine it because they are actually living. One of them, that i asked to join be here today in this room is 61yearold pam montana. She is right there. She is sitting behind me. I wanted her to come here today because she was just diagnosed with alzheimers. Her diagnosis has forced her to leave a successful career at intel and forced her husband bob to quit his career as well so he could care for her. An uncertain future and a scary one at that. I wanted you to see pam because she is the face of alzheimers. A woman in her prime. A mother, a wife. Someone who had a successful career, earning money. Of alzheimers. And she and her husband, along with all of the people in this room, have come here to capitol hill from all of the country to use their voices, to advocate for increased funding, to tell you what it is like to live like this every single day, 24 hours a day. You know, there are so many Brilliant Minds now focused on this issue. Likeny forceful advocates those of you on this panel and the 1300 alzheimers associates that are standing out today. So many like the ones in this room who can no longer accept when they are told we just do not know what causes this disease or what to do about it. Oldthem, that is plain unacceptable. Of for me, as a child alzheimers, it is also unacceptable. As someone who is pams age, it is terrifying. The statement we just do not and, needs to be repealed replaced. It needs to be repealed and replaced it with this we do know and this is what you can do. Because it was not so long ago a certainids was death sentence and cancer, pretty much was an curable and now, so many of them are curable. Science, an investment in science, has turned all of that around. Nobody, nobody out who has ever been diagnosed with alzheimers has survived it. We can and we will do better than that. When my uncle john f. Kennedy was president , he challenged this country to put a man on the moon. It had never been done before. Today, i challenge you to also do something that has never been done before. Give us the first person who survives a diagnosis of alzheimers disease. I am asking [ applause ] ms. Maria shriver i am asking this congress to do what it takes to get our brilliant researchers act up and warning at full capacity and their laboratories around this country, doing what they do best. Finding solutions. Finding answers. Finding joy. Not only that, until we find a cure, we have to do a better job as you have talked about today, educating the public on ways to live healthier lifestyles. We now know through science and technology that the brain never stops developing. Believe it or not, that is new. We need to educate people on the connection between brain health and healthy diets, physical activity and stress reduction and how they can expand their brainpower with Lifelong Learning and social connection. For thea priority Womens Alzheimers Movement which is why we have partnered with the Equinox Sports Club in for aacross this Country National program called move for minds. We are determined to get this message out to Mainstream Media mainstream america. Get support to the millions of caregivers. We have spoken about them today. The ongoing stress on these families is unimaginable. They need the resources to help them care for their loved ones while also working. And we must also ensure there is a welltrained professional workforce ready to provide polity care to the increasing number of People Living with alzheimers and other dementias and who will need their services at home and in facilities as they grow older. I know you might be thinking that this is quite a to do list but i have never met anybody, and i have never let a woman who not good at who is crossing off her to do list. And i believe this to do list is one we can do. Even in this current climate, and perhaps more so, the American Public is desperate to see democrats and republicans worked together. To seee desperate success here in washington. And this is a great place to start. So, i am asking all of you, with the brains that you do have today, to come together, to my cracks and republicans and make a commitment. Let us do what we need to do to stop the onslaught of this mind slowing disease. Because america, should be the leader in solving this Global Medical crisis. We are the greatest country on the planet and finding a cure for this disease will make us the smartest one to boot. Thank you very much. [ applause ] you so much. Thank thank you. Thank you. Ms. Maria shriver do not make me cry. Sen. Collins thank you so much for your very compelling testimony. As you can see from the response that you have received. I think you have motivated every Single Person who is here as an advocate to go to their senators and their house members and tell the story of what is needed. And that we certainly cannot stop now. We have to continue to go forward and that does require funding. And if ever there were a case where investment is going to pay dividends, and ultimately, not the save money, but improve quality of peoples lives, it is an investment in alzheimers disease. Ms. Maria shriver absolutely. And this will indeed make America Great again. Sen. Collins as we have said, this is the most expensive disease in the country right now. Ms. Maria shriver funding it and finding ways to prevent it or cure it will save us billions of dollars. Sen. Collins you have raised a very interesting point about why people are less comfortable with talking about alzheimers disease. And you told the committee back been09 when your dad had diagnosed six years earlier, that you had felt at the time confused, powerless, and alone. I think a lot of people still feel that way. When they get the diagnosis or when their loved one does. Do you feel there is a way that we can reach out more to families who are dealing with this devastating disease . I. Maria shriver yes, and think all of the people in this room feel very hopeful. They are putting their hopes in this committee. They are putting their hopes in this government that you will actually secure the funding to find a cure for this disease. I think the more that we talk about subjects that are somewhat taboo, the more we talk about aging, what it is really like, the strength it really takes to age. The more we talk about the truth about caregiving, how complicated and difficult it is. The more we try to engage not only lawmakers but corporate america. The more we try to get companies to look at caregiving leads. The more we try to encourage them to keep people working who are numerous. The more we really talk about the reality of how our country is aging and the needs of our population, i think this disease will lose its stigma. I think people do not want to talk about it because they are afraid of losing their jobs, they are afraid there is no cure. Orre afraid to tell someone, even if they get tested, what hope is there for them. That is also why we are talking so much about lifestyle choices. We are are learning, learning that our genes are not our destiny. You are learning there are things we can do to keep our brains engaged. Think that 20yearold, and 30 rolled need to start doing. The benefits of certain kinds of foods. Medication. How we manage stress. There is nothing more stressful than try to manage a job, be a parent, be a provider and being a caregiver. The more people that people in mainstream america see their elected leaders acknowledging key for thisis disease and support for caregivers are nest is necessary. The more success they see here, the more hopeful they will be out there. Sen. Collins i think that is exactly right. Iapplause ] sen. Collins also believe that when people are first diagnosed, they are worried they are going to be isolated and treated differently by their family and friends. Because of the stigma to which you referred to. I want to switch to another in the less than two minutes i have left. Kicked off the program move your mind. And you of looted to this in your testimony. This is fascinating because we are going to hear from our next panel about some of the Interesting Research that suggests that, in addition to that may produce alzheimers, particularly early onset, that there are ways that we can stave off or delay the disease for some people, not for everyone. Could you talk more that may pre alzheimers, particularly early about what you have learned about the Bodymind Connection . You were starting to talk about there. Ms. Maria shriver amazingly, people are surprised they are connected. Which is so extraordinary. Is one body and our brains and our bodies are connected. As senator casey was mentioning, we are learning that a heart healthy diet is good for the mind. We are learning that. We are learning that the mind can continue to grow. It is important to learn new things. Just because you learned new things up until you were 30 or 40, does not mean you do not take does not mean that you do not need to keep engaging the brain. Was doing for nbc this week is on the super ager brain. And there are now studies of people in their 70s and 80s who have a brain of a 20yearold. It is very interesting. These are people that are pushing through, constantly learning. When it is hard to learn, they pushed out of their comfort zone. There are also people that manage stress differently than others. We are beginning to learn things about how the brain ages. One of the things that move our minds is a holistic approach. Learning, staying socially engaged, exercise. Every researcher and dr. I have spoken to as i travel this country, i. S. Them what is the one thing i can tell people to do . And they say exercise, exercise. Eating a mind or Brain Healthy diet, exercising, learning new things, challenging yourself and pushing yourself out of a comfort zone. Eating healthily. Meditation. Mindfulness. Turning off technology. Resting your brain. Sleeping. These are all lifestyle things we are learning affect not only the body but the brain. If we start doing them when people are very young. Can manifest for 20 years in your brain. This is a message that we want , 40, andt to 30 50yearolds and particularly to women that are paramount up also. Menopausal. Women are handling these lifestyle issues differently than men and that has not really been looked at. Sen. Collins thank you very much. Senator casey . Sen. Casey we are grateful you are here again. We wish you did not have to come back because we want to make more progress on this challenge. But i thought one of the best things are many that you said that were inspiring was that we hope that down the road, we will be able to say here is what you can do as opposed to something else. We are grateful that you brought that sentiment and goal to us here in the senate. And it is a mission. A mission where we are a great country. You have given us a good roadmap and a good to do list. And we are grateful for that. I wanted to focus on a program that i think we are all are more aware of now, but also that we appreciate more even than a few weeks or months ago and that is medicaid. That the many things medicaid does, for example, it provides health care for 1. 1 million children in my home state. A lot of hoax get into Nursing Homes because of medicaid. And the third major category are americans with disabilities. Your family has done so much, it is hard to calculate the impact of your family in a positive way on people with disabilities. One segment oft the disability community, those with down syndrome, those americans are disproportionately impacted by alzheimers. And i wanted to ask what would you hope we could do about that and if you have yet another to do list, we would love to have that. Ms. Maria shriver my brother timothy who runs the Special Olympics would best be equipped to deal with that but these statistics do show that people with down syndrome, 100 of them butnd up with alzheimers only 50 of them exhibit the traits. I think there is some interesting studies going on. Some families have very brutally volunteer to be in those trials and studies. One of the things we are trying to do is to get more americans, it they families with down syndrome are women and men into these Clinical Trials. I speak with researchers across the country and they say they have a difficult time getting people to participate in Clinical Trials. This is a big mission of mine to ask people, and corporate forica to make it easier people who work for them to participate in Clinical Trials. Now, if you participate, you have to take the occasion time or it or a sick day. What about the idea that they would pay you. Timeou do not have to take off to participate in a Clinical Trial because it is a form of national service. We all benefit from individuals brave enough who take the time to participate in Clinical Trials. Once again, this comes back to funding. Making it possible for families to riches a pay in trials, be it a family with a down syndrome member. There is also a lot of fear that goes into that. The dissipating in those trials, people are generally afraid to participate in a trial. I have met others that say that knowledge is power and they know more people that would participate if it was easier to participate. Sen. Casey i appreciate that. Finally, i want to thank you for highlighting the disproportionate impact this disease has on women. I grew up with crotch wrote sisters and i have four daughters. Ms. Maria shriver well. how are you . Sen. Casey doing just fine. Ms. Maria shriver there is a book in there somewhere. Sen. Casey this is a challenge that you pointed toward and we all wrestle with. The focus ont funding but on sustaining that focus over time. Like a lot of things in the societynd house and more generally, we go from one end of an issue to another. ,hat will be a front burner nature issue on a monday afternoon can be forgotten about by tuesday morning. We have to figure out more and better ways to sustain the focus on the urgency, the primacy of getting more funding. I am grateful that you gave us the inspiration today to do that and also the data that undergirds that urgent priority. Ms. Maria shriver thank you, senator. What is particularly alarming to me is that most women do not know that they are at risk. They do not know these facts. They do not know there are things they might be able to do today that could perhaps prevent this or delay. And they do not know there are things they can begin to do in their daily life that might help them out. I also think more advocates the ones in this room are going to tie their votes to people that support this kind of funding. They are getting smart about advocating. And making sure that their voices are heard. I encourage them to do that. Because, this needs to be a front burner issue, every single day. Not just for those industry. For many, it is too late for them. For the millions turning 65 every single day. The baby boomer generation and our children. If i were to get all timers, it will impact my entire family, the future of my children and their work life, their parenting and how their families unfold. And i happen to be able to afford care. Millions of americans cannot handle the outofpocket expenses that they are incurring today. It is putting them into poverty, on the brink. They are quitting their jobs. Mortgaging their homes. And it is excruciating. This is a front runner issue if i have ever seen one and i have been around politics for a long time. This impacts the entire family. It is impacting at a level we have never seen before. Sen. Casey thank you very much. Sen. Collins senator fischer. Sen. Fischer thank you for convening this important hearing today. I also want to thank miss shriver and all of our witnesses for being here. I am very pleased to join the aging committee this year. The impact of alzheimers is felt far beyond just those that are inflicted with this really, evil disease. It is felt by family and friends, caregivers and others that interact with these individuals. Every family has a story. My sisterinlaw is a victim of early onset also immersed. Havingankful that we are a hearing today on this topic. Through your work across our country, what are some of the localble and innovative or communitybased approaches that you have learned about or that you have seen and maybe that you have even helped to develop that will help the victims and help contribute to this fight that we have against this disease . Ms. Maria shriver thank you. And i am sorry for the pain in your own family and thank you for sharing that. One of the big things that i am of is because families share their stories and it takes great bravery and that is how we get these stories out into the public arena and it is how we begin to destigmatize this disease. When i was first lady lady of california, i came into contact with several Day Care Centers where working women could bring their children and their parents, simultaneously. It was quite inspiring to see kids who were five or six, greed stories to people who are grandparents. This was an innovative approach it because you did not have to go to alterable locations to drop off a loved one. One of the great challenges i found when my dad got alzheimers and my mom was getting strokes was finding professional the workforce who were welltrained about the differences in these brain related challenges. Someone who has a stroke versus someone who has alzheimers or parkinsons or another form of defense or come need a more educated workforce and obviously a caregiving force that makes a living wage as well. There are a lot of facilities going on, people who are using music and art and different kinds of therapies to engage the mind. We are learning that music engages part to the brain. As senator collins said my father did not know who i was that he could say a hail mary and he could sing a song he knew when he was 18. There is still some much we do not know about the brain. We have to look at it just like we look at paternal leave, maternal leave. Looking at different forms of day care. Elder care. Childcare. How we can combine that in different locations. We often find that those with stages, are later doing a lot of the same activities that little children can do. Looking at more intergenerational living. I have seen homes where young kids went to live, where they went for college, and they lived rentfree in a building that had mostly seniors. In exchange for room and board, they played music or they had meals with people with alzheimers. Generationalfited living. I think that is an exciting new space. Whether it is in terms of day care and elder care combined. Whether it is in terms of young people, millennials living alongside people who are 70 or 80. That is an exciting, new, and inspiring wave of the future. Sen. Collins since your last year, we have seen some amazing strides in research. And the development we have there. We have looked at education, prevention, and treatment also. What do you see as the most significant milestone that we have reached so far and what do you envision as being achievable . Many thingsriver are achievable immediately. I envision a chore. I envision i envision a cure. Like what happened with aids where you can get a diagnosis and continue to work and be a productive member of society. If federal funding reaches the level that we have asked for, or re is inhat, a cu our reach. I see no reason why this cannot space in the alzheimers as well. I think this is a very complex and mysterious disease. I think, every researcher i have spoken with say that we have to approach it differently than we have been approaching it in the past. We have to look at people earlier. We have to look at women versus men. We have to look at chromosomes. We have to look at inflammation. We have to look at things that perhaps we did not look at for we do not look at before. But i am really hopeful that a cure is within our grasp it. I mean 510 years from now. Sen. Fischer thank you. Tillis. Lins senator [ applause ] ms. Maria shriver i will add that i will be back here again if we do not get the funding or a cure. [ applause ] i haveia shriver retired my purple dress and i will get a new one to come back here. Sen. Collins hopefully, you will not need one. I was going to say that i hope to never see you again in a good way. Thank you so much for coming. Do we have any of the North Carolina group here in the crowd that i met earlier . Thank you for coming back. I wass something that interested in when i was speaker of the house. We worked on the things within the state per view. A lot of that had to do with caregivers. I happen to agree with you. The fact that you came here because you think that nih funding is at risk is a real problem and it is a problem we need to solve im making this a priority. I think you have a number of people here that will work to do that. Head means the heart policy. When i was speaker of the house in North Carolina, the policies i liked the most were the things that had to normans impact on an individual and their families. And saved a lot of money. Freed up resources for the other things we need to do. I think we need to better educate our members who think that there is not a compelling fiscal reason for doing it. It is not the primary reason. A secondary benefit for trying to help people who have this horrible disease. Thank you for your advocacy. I want to talk about things that we also need to do for the caregivers and things we need to do to educate people because of the numbers. An understanding of what they need to do to make this horrible journey that the loved one will go through, manageable. What else can we do or what other things should we be looking at as matters of priority that are things that are working . That better prepare caregivers for the hard task they had to help their loved ones. Ms. Maria shriver i think you will hear from some people who are doing that, 24 7 in a few moments and i think they would be able to better advocate what would help them. Every caregiver i have met, and i have met thousands and thousands come it be they men or women. And i want to say that even though my focus is really on women, i have met extraordinary right here sitting behind me. Extraordinary men who make it their priority to care for their loved ones. Grey stories of love and commitment and sacrifice going on in this country, day in and day out. Most of them say they need a break. They need time. Because often, the caregiver gets sicker than the person they are caring for. They need someone to come in and help them that they can afford. Timeo they can have some to focus on their own mental and physical health. I think, routinely, you hear that. Making it affordable and that the person they can hire is welltrained in what their loved one needs. We need a caregiving for sprint when i was looking for a caregiver for my father, no one was trained in what it took to care for someone that had alzheimers. They did not understand how he might be different than someone else they might be assigned to care for. I think they will advocate and to you that we need a Trained Work Force. And trained in the different forms of dementia. And different brain related challenges. I need to be able to afford caregiving so they might be able to continue to be the provider in their family. As i mentioned, with pam being diagnosed, she quit her job and bob had to quit his job as well. That is not sustainable for families. And that is what is happening. It is a 24 7 job. I think, being able to afford caregiving, being able to find educated caregivers and a workforce that is capable of handling the tsunami. And to encourage people to go in this line of work. It is a growing line of work at. Paying them a living wage. An educated workforce. Chair, i haveadam another committee that i hope to get back to and ask questions of the panel, otherwise i will submit questions for the record. But again, i think that we need to continue to fight for the funding, increased funding for alzheimers. I will continue to support that. Also, you made a point in your statement that i think is important and it has to do with bipartisanship. Nerdsort of a consulting here and we have to think of other ways, as we look for funding, we also have to look for ways to be more productive with the funding that we are producing. Anhink this represents opportunity for republicans or democrats to come together and hurdles,ome of the whether it is research, regulatory environment, authorization for new therapies those sorts of things that we can look at and hurdles, whether it is research, regulatory find ways to remove barriers to get more productivity and a faster path to treatments and a cure. It is something we need to focus on. Not just talk about it. Focus on it because i think there are billions of potential dollars out there beyond that which we are putting into nih to accelerate towards a cure. Ms. Maria shriver researchers say that it takes forever to get anything through the pipeline in terms of drugs. I think we need to look broadly at the research, at the fda approval process, how do we get certain drugs that might be promising into the pipeline quicker. I think that is exciting to me that you are willing to look at that. ,s i said, in the long term this is something that will save our country billions and billions of dollars. The is an example for country where democrats and republicans can Work Together on. This is a perfect example of an issue where head and heart can Work Together. And where it does not make economic sense not to Work Together. Whether you look at it in terms of humanity, in terms of fiscal responsibility it all lines up. That is why it is so incredulous that we would think about cutting it instead of expanding it. It is impacting so many families of both political parties, independence, greens, you name it. It is an equal opportunity offender. I think we can put our brains together and say this works on every level. Let us increase the funding. Look at the pipeline for drugs. Let us look at all the different hurdles that might be impacting research and look at it holistically as i have been talking about trying to look at the brain and the body holistically. The issuelook at holistically. Alzheimers is one form of dementia. There are many forms. It is leveling our families across this country. I welcome the fact that you are willing to look at all different aspects of it. Sen. Tillis thank you. Sen. Collins thank you very much. Senator blumenthal. Sen. Blumenthal thank you, madam chair. Thank you for being here today. Thank you to you and your family for taking on so many powerfully important causes. I will not embarrass you and them by going through the list. A great have been such champion of this cause. I think the turnout that we see the growing american awareness and support for it. And all the more incomprehensible is the budget cuts that have been proposed by the president. Billion including 5. 8 in cuts to the nih research budget. We should make no mistake that they ask will fall that the ax will fall on the research that is indisputably important. I am very focused on the aspect of this issue that you have raised. Not only from the point of view of individual civilians, but also veterans. Lead thee helped effort on the Veterans Affairs committee in the senate to try to deal with the invisible wounds of war which we know afflicted 30 or 40 of everyone coming out of combat. ,he impacts on the brain posttraumatic stress disorder, not even diagnosed until the 1980s. Dementia andto alzheimers for reasons that we still are exploring. Through research. Struck that sense, i was by what you said about the caregivers. The v. A. And the federal government have only begun recently trying to help people who deal with folks who are afflicted with this disease. They need a break. They need support in insurance, counseling, financial wherewithal. Understanding and support because all too often, we think the hero as being the wounded warrior, which he or she is. But, the Unsung Heroes are also the caregivers. So, i have been very glad and grateful that senators collins and baldwin has supported , the 1719, caregivers act which begins to work in this direction. I would be very interested in more specific recommendations you have for what we can do. Ms. Maria shriver i think individuals who are dealing with this 24 7 would best be able to describe what they feel like they need. I am aware of your extraordinary work. This is an area where so many veterans have come up to me actually looking at different forms of posttraumatic stress, looking at different innovative things they think are working on the brain. Are not treatments that fda approved that seem to be helping. When we talk about republicans and democrats working together, the brain, working on finding therapies, working on finding and making the fda approval process speedier were things that work on the brain. This is a huge, open space that once again veterans can work alongside caregivers. Oftentimes, when we talk about caregivers, people think about it as a soft issue. A long time ago, when i was getting into journalism, people told me to go to womens issues. And i wondered what those were. And they would say caregivers. I said that is heart stuff. It is caregiving, as i have written numerous times, that is muscular, tough, you have to be unbelievably strong to do what the men and women in this room are doing, 24 7. As late stage happens, you have to be physically, mentally, emotionally, and spiritually unbelievably strong. I think that these families need support. Obviously, as i have said before, financial support, emotional support, time. They need to know that they can continue to care for their family and their loved one. They need support with that. Whether it is through medicare and medicaid. They need that. And they need hope. Hope helps us all. Hope that the government is funding their fees and research ands funding Therapies Research in supporting caregivers at a level we are not seen today. I think of people have hope, they can get through all sorts of hoops in their lives. If there is no hope to get a Trained Work Force out there, it is hard to keep going. It is hard. But i think that there are people in this room who can better describe what they are up against, 24 7 then i probably can. Sen. Blumenthal if it gives them any hope, i hope you will give everyone you are in contact on thise message that committee, and i think in the senate, there is a lot of support for what youre doing and we will fight these cuts that are proposed. [ applause ] sen. Blumenthal that we will. Ork for this cause and if there is one truth about american democracy that has been reaffirmed for me in recent weeks, it is that people can make a difference. Ms. Maria shriver amen. [ applause ] sen. Blumenthal that every individual can make a difference. Senatora shriver as collins knows, i have been at this for 14 years. Every time, i thought maybe now, maybe now. But i have never been more hopeful than i are today then i am today because people are they aresavvy savvy about their voices and their votes. They know a lot more about the process in the last year than perhaps ever before. People are engaged in our civics. They understand what an executive order is and is not. They are aware of what nih consequencesd the of cutting it. They are not going to take it. They are not going to step back their calling. Their senators and congressmen. [ applause ] ms. Maria shriver and i think that is exciting. Putit also ought to everyone on capitol hill on alert. People get it now. They get the power of their voice. They get the power of being here. They are not going to take these cuts. Sen. Blumenthal thank you very much for your eloquence and advocacy and for helping to enliven and educate the American Public. I would leave you with this quote. I am way overtime. I apologize. Margaret mead said ms. Maria shriver i will say it with you. Never doubt the small group of people that can change the world. Fact, itenthal and in is the only thing that ever has. [ applause ] sen. Collins senator donnelly. Ms. Maria shriver i have that above my computer. Sen. Donnelly thank you, madam chair. Thank you. As an aside, my hometown of south bend, indiana and your family brought the Special Olympics there many years ago. It is one of the most extraordinary times in my life and in the life of my town. Are still grateful to this day for all that you did to bring that and all of the special moments and special athletes who are there to celebrate. We really enjoyed it. Ms. Maria shriver i remember being there myself. And my mother said you should go confess to the father. Sen. Donnelly we were all in line for that. One of the things i wondered to ask you is how much hope does it give you when you look at where the research is now compared to what it was 25 years ago. It is moving pretty fast. Ms. Maria shriver not fast enough. I would be lying to you if i said im really excited. But i actually am really hopeful. As i said, i have been at this for 14 years. When i first started, people did not even utter the word. It was always said in a whisper. People had no understanding of alzheimers. They did not face it, person to person. Now, i do not go 15 minutes on the street or anywhere else without someone coming up to me and talking about how they are impacted. I meet people going into neuroscience because their grandmother or grandfather got an alzheimers diagnosis. I meet men and women engaged in advocacy and finding chores are going into daycare or the health have,usiness because they face to face with this. I meet a lot of young entrepreneurs developing apps trying to take care of caregiving demands. Science. Find a who think they can do something that the government cannot do. There is a lot of Energy Around this from the business world, young people, from advocates. But, do i think there is a chore around the corner . Around the is a cure corner . In some dish somewhere, i believe there is a cure. I have to be that hopeful. Do i know where it is . No. Do i think it is within our grasp . Yes. Sen. Donnelly i have always thought that was one of the magic parts of the nih. Like you said it is in some dish, somewhere. You go and talk to them and you ask which one is it . And they say we do not know and that is why we have so many places we are working with. I have always thought that when it the great things they do is we are not chasing this with one line. We have 3050 fishing lines out there to try to catch this cure. Ms. Maria shriver i think we need 100 fishing lines. I would advocate more fishing lines out there in a broader sense. I think we have been having some fishing lines in main areas and we need to broaden that. That is why i am raising money for womensbased research. Let us look here. Let us look at places where we have not looked. Let us move this along quicker. Let us look at what we have not looked at before. Sen. Donnelly you have folksned two thirds of who have been a afflicted with alzheimers are women. Have you seen any research that gives you an idea why . Ms. Maria shriver no. And that is why i am doing this 24 7. Because the i do not know is unacceptable. I go to different labs and ask if they had studied women. And they answer no, but we will now. It is quite new in a way. It has not been around in the consciousness or with awareness as long as cancer. It does not seem to have had the same urgency as aids, for example. But i think that now, we are at a place where it does. Advocates have become more forceful. We are marketing it in a different way. Encouraging researchers to look at women in ways that they had not looked at them before is exciting to them. Women do have different chromosomes. Inflammation. Women process that differently. Looking at type three diabetes. Look at 2030 different ways of looking at it is an exciting space that did not exist before. Im just about out of time but i will make you one promise and that is to everyone here. The panel feels the same way. I promise you those nih cuts will never happen. [ applause ] amen. Ria shriver thank you. Sen. Collins thank you, senator. I agree. Sen. Donnelly she is more powerful than me. I am now delighted to call upon another new member of our committee whose birthday happens to be today. Enator cortez masto sen. Cortez masto thank you so much. Thank you for having this discussion. Thank you for what you do and being a voice. I always feel that education is the first step in prevention. We do not do enough of it at times. For everyone in the room today, being a voice on capitol hill for addressing the importance of brain health and alzheimers. Thank you for being here. I really just have a comment. 1990, my grandmother, who i am named after, had alzheimers. That was at a time when we did not really understand it. We did not have enough Health Care Programs for it. She wasfortunately one of the smartest women i ever met. In hernd active community and she came down with this horrific thing in nevada. And my grandfather was her caregiver. And my mother was her caregiver. And my aunt was her caregiver. And my cousins and i and my sister we were all caregivers. And i remember thinking she eventually passed away in a nursing home. And i remember walking into the nursing room and thinking that thank goodness she at least had family there with her. Because there were people there that do not. That is part of the tragedy of this horrific disease that i feel we need to be spending the money for the research, for the cure. I do not know about how you feel a part of history where we meet baby boomers are aging out. Health,comes to brain it is one of the most important areas we should be focused on, doing the research, looking for cures and their these therapies and providing support for caregivers when they have a loved one. I have to put a plug in for the. Reason, i have had the opportunity to sit down with them. We do not have a cure yet but with the research, we can you are right, it is there. It is waiting to be discovered. This. Promise you i spoke to the group who was in my office earlier. This is my commitment. I will continue to fight for the funding. We all agree. We are going to stop and fight against any cuts to nih that we should be looking for additional funding that supports the thearch, the therapy and support for the caregivers. Money isthink that the wasted. This is an area where we should be taking our taxpayer dollars and investing in the future of brain health in this country. I appreciate you all being here. [ applause ] sen. Cortez masto i just won a to make that comment and make you aware that you have a partner already in me and i will always be there supporting. Ms. Maria shriver thank you. I think one of the things you said about education. That is a huge aspect of this. Educating people about the power that exists in them to control their health. I think this is a big thing that doctors and researchers are talking about. A personalized medicine. Trying to understand what works for your body and your brain. That is where the future of health care is going. Saidere as one doctor when my father was diagnosed, once you have seen one case of alzheimers, you have seen once one case ofe alzheimers. It is a complicated disease. We have to encourage young people to take control of their health. To be educated of the pros and cons of treatment. To be involved in their own health. Sen. Cortez masto i agree. Thank you for being here. Sen. Collins thank you very much, senator. On behalf of the entire committee and everyone in this room, and all throughout america , and indeed the world, who have benefited so much from your advocacy, thank you so much for being here today. You are a powerful voice. Thank you. Ms. Maria shriver thank you. Thank you so much. [ applause ] thank you soiver much for having me. It has been an honor. I want to know i want you to know how moving it is to me to be here amongst all of these incredibly brave and inspirational men and women who are taking their personal time to be here, to speak to you and visit with you in your offices. It is one of the most humbling experiences of my life. And i have had a lot of different experiences. But to be amongst these people who are fighting for their loved ones and their own health is really an honor and a privilege. And i hope that you fund this disease and i hope that pot that pam montana and others that stand behind her can benefit. Thank you. Sen. Collins thank you. [ applause ] sen. Collins now, we are going to move to our second panel of witnesses. And we thank you again so much for appearing today. [ applause ] sen. Collins our first witness on the second panel is dr. Christine yaffe. Research inchair of psychiatry at the university of california, San Francisco school of medicine. She serves as the professor of psychiatry, urology, epidemiology, and biostatistics. In other words, she knows everything. She is also chief of neuropsychiatry at the San Francisco be a medical center. Recognized asas one of thomas routers worlds most influential scientific mind. Next, i am going to turn to my colleague, senator donnelly to introduce dr. Christopher callahan. Sen. Donnelly thank you. It is my pleasure to introduce a fellow hoosier, dr. Chris callahan from Indiana University. Dr. Callahan is the founding center for the iu aging research and has over 25 years of experience studying new models of care for adults. He is also a professor at the iu school of medicine, a research aientist at the institute and director of the eskenazi office of applied research. His work focuses on improving the ways that we care for People Living with dementia, depression, and other similar conditions. Dr. Callahan was part of the team that conducted the first ofdomized controlled trial collaborative care for Patients Living with alzheimers. He has since led several other Clinical Trials designed to improve care for older adults with alzheimers and he continuously seeks to develop models of care that integrate family, community, and medical professionals. Despite improvements in recent years, many challenges still remain to providing quality care to all people with alzheimers, medical workforce shortages, to all people with alzheimers. It impacts access to care. Innovative models can be expensive to implement and Rural Americans can find them can find themselves far from the resources that need that they need. Making an effort to ensure that quality treatment remains widely available. Dr. Callahan, i want to thank you for your important work. We are so proud of you and the work youre doing. We are very glad to have you here today. Thank you. Sen. Collins and now, i would like to turn to our Ranking Member, senator casey to introduce our witness from pennsylvania. Sen. Casey it gives me great pleasure to introduce a fellow pennsylvanian. I made reference to Phyllis Gallagher in my Opening Statement today picked phyllis is a caregiver. In School County hyl county. We are grateful you are here. Phyllis, like many in the audience, cares for her loved one, in this case, her husband john. And were grateful that phyllis is here to talk about the challenges she and her family have faced. John began showing symptoms of early on set dementia when he was 49 years old. That was nine years ago. Phyllis cared for john at home for as long as she could. And she john had to transition to a residential facility. In addition to caring for john, es an avow cat for People Living with alzheimers and their care givers. Thank you very much. Thank you very much. And well start with dr. Yacki. Thank you for the opportunity to testify today about one of the most important issues of our time, alzheimers disease. This has been a remarkable afternoon. Alzheimers is if most common cause of dementia, usually associated with aging. It results in memory and other cognitive symptoms from a complex accumulation of proteins that leads to the death of nerve cells. Despite tremendous advances in Brain Science over the past decades theres still so much to learn. It is unclear why some people get the disease and other who is may have evidence of the proteins do not get the disease. Further more, we still do not have good treatments. What we do know for sure is that alzheimers disease is devastating it it carry as tremendous tol ox on the patient, our caregiver or Healthcare System and our society. We need to change this trajectory for treatment and prevention. One of the most con accept chule and interesting challenges over the last few yeeks is we now know that it takes decades for the abnormal proteins to develop. Therefore we have the opportunity to prevent even before symptoms to delay or even prevent alzheimers. We are finally in a position to study this. This has evolved to studies of risk factors that might be modifyable and two, studies for new drugs. There is emerging evident that several factors might increase alzheimers in addition to genetics many are modifyable. One of the things that weve learned and senator casey refered to is that what is good for the heart is zpwood for the good for the brain. Why is that . Because hypertension, diabetes, high cholesterol also affect the risk of alzheimers. We think theres a 50 risk of alzheimers with these factors. The exact mechanism is stoil be worked out but most likely its an affect on the blood vessels and increasing the protein amaloid. Several trials are under way to see if diabetes, and Blood Pressure medications mail protect against Cognitive Impairment but we need more research to find out how or when they impact. We heard from ms. Shriver that it may be important to intervene earlier in life in the 30s and 40s. So its a very, very important issue. The concept of cognitive reserve has been reserved as an explanation. Why do some people are they able to tolerate the brain changes with alzheimers and yet others cant. This is this idea that even with the brain changes you can tolerate and dont have symptoms and its exciting because now we have some opportunities to maybe promote resistance to alzheimers. Factors that increase to cognitive reserve is activity, and cognitive stimulation. Studies support the idea that being active both in body and in mind may prevent alzheimers. But more work is needed. Traumatic brain injury is a common condition. It peaks in earl illadulthood and actually has a second peak laettner life. Many studies have reported that moderate and severe brain injury increase dementia but theres less known about mild t. B. I. Known as concussion and whether this also increases risk of dementia. Studies are much more controversial. So clearly we need more research in this area as well. An area of resent discovery has been the connection between sleep and alzheimers. His is a fascinating area of investigation. Proteins are cleared out. We dont know what sleep is doing but maybe it clears out the protein. Therefore if sleep is disrupted ue to sleep apnea the proteins might increase. We dont know if sleep may improve or delay it. But many are interested in slowering. Some argue that these modifyable risk factors will never cure alzheimers. We do need better drugs. Because these life factors are so common and can be changed and without side effects we can have a big effect on the individual and society. Studies suggest that if people could reduce these risk factors by 10 to 25 physical activity or 10 to 25 hypertension control we could see a big effect on the down stream effect on the number that develop alzheimers. Many countries have trails. In preliminary results look quite good. We need to have such trials in the u. S. Theres also been tremendous interest in developing more effective drugs if alzheimers to see if these may prevent the disease in the u. S. There are four farm co logical trials testing trials for people with by genetics or symptoms. They most of them target the accumulation of abnormal proteins and in this way it may be possible to prevent or delay the disease. Some experts including myself think that some day als heim lers be like chronic Heart Disease with several available drugs that treat the disease. It will not be the devastating diagnosis that is today. In addition these drugs might be combined with lifestyle modifications. In order to do this, we need more research. While the field has come a remarkably long way from when just a few decades ago people thought dementia was normal aging. We still have a long way to go. In 2011 the bipartisan national alzheimers act that you chairman collins coauthored and became law, and i urge you this and to bypass the budget thank you for your interest and all that you do. Sen. Collins thank you so much for your very interesting testimony. Good afternoon. Ranking member, casey. I also want to thank senator donnelly for that very warm introduction and thanks for the ton to speak with you today. Im going to speak about some exciting work on new models of care. But i want to talk first about how care can go really terribly wrong for people with alzheimers disease. And i want you to imagine for a moment your elderly widowed mother. Maybe shes 76 years old. And she appears to enjoy wonderful health. But maybe youve noticed some things. Maybe youve noticed an accident in the kitchen or maybe an accident in the car. Maybe youve noticed her repeating herself but she seems happy and she maintains a clean home which you help out with. And so you keep your concerns to yourself. Then you get a call from the neighbor. And the neighbor says your mom walked into their home last night and was rude and disheveled. And you investigate further you find out that your moms finances are in shambles. Her Bank Accounts have been drained by a scammer. Bills. Overdue utility later that year she fractures her hip. She seems to be pingponging between the hospital and the nursing home. Shes on a dizzying array of medications and also bouncing between doctors and you feel completely alone. And i know stories like this will be played out multiple times this year and in coming years. And while that story is tragic, im certain that someone behind me can tell a story thats much more tragic. It doesnt have to be this way. And thats what i was asked to joushy ut to make the for als journey for alzheimers disease less painful we all have to do something together. Many things can look like alzheimers disease and its easy to dismiss the early signs but a failing brain is not normal aging. Once a patient receives the diagnosis of dementia, theres a complex road ahead. We have to give the caregiver education and support as well as the care recipient. Theres a lot of Decision Making in front of them. There are treatments to consider and lots of Care Planning including financial planning. People need to know their new vulnerabilities and the services and supports that are available to them. But now there are road maps research on models of care hats funded by the hartford foundation, the senate for medicare and medicaid innovations, they show they can improve care. New models integrate the Healthcare System with our community and our social support services. Im going to give just one example of this research. Scientists at Indiana University tested an approach known as the collaborative care model that senator donnelly alluded to. That model provide primary care physicians and their patients a Health Screening and a companion diagnosis program. The model provided Care Management through an interdisciplinary team. That team was led by an advanced practiced nurse working with the patients family and integrated with primary care. Families were refered to the Alzheimers Association to get the support thats already available there. Both patients and family care gives in that study had improved symptoms. They were more satisfied with the care and they were less likely to receive harmful drugs. Similar models have been tested at ucla and Johns Hopkins among many other places. In a report published just this month in Health Affairs using another model also a nurseled intervention with persons with dementia in the nursing home, they showed that they could decrease unnecessary hospital use and they could decrease overall medicare costs. The sad news is that these models are not reaching the millions of americans who could benefit. Older adults in Rural America re hundreds of miles away from even basic services. The main problem is an inadequate workforce. New models of care need to expand our reach of our limited addition workforce. This might include training nurses, social workers or other professionals to provide these services. However, even that workforce is inadequate as the institute of medicine has documented. Our country needs a very large increase in the number of direct care workers who can provide handson care with older adults with alzheimers. I will end by saying though, if theres one reality that i could best highlight it would be this. Family caregivers are the hands, the backbone and the heart of the nations workforce for alzheimers disease. This will not change over the next 25 years. Family caregivers will sacrifice their sleep, their health, their finances, their careers and their friends to provide care in the home for as long as possible for their loved one with dementia. Theyll do it, but they shouldnt have to do it alone. So often we hear family caregivers say at the end of their draining 10year journey, that they wish what they wish they knew then what they know now. Their best way with families with dementia is to help their family caregivers. Thank you. Sen. Collins thank you very much for your testimony, doctor. Mrs. Gallagher. Mrs. Gallagher thank you, chairman collins, Ranking Members for the opportunity to testify today on the toll of alzheimers and other dementias. As the caregiver for my husband john, i hope this will shed reality. My husband john and i have been happily married since 1993. John is the nicest kindest man. We had fun together prior to his diagnose. He was healthy as a horse. 62, 260 pounds and he went to the gym every day. He ate well. Although he is a good irishman and enjoyed beer here and there. He was very social. After his father pass aid way in 2008, i started to notice that john was having a harder time finding his words. As we would later learn, this was the start of our journey with alzheimers and john was only 49 at the time. We started with our primary care doctor who thought john might be suffering from a stroke or depression and anxiety following his fathers death. When john did not get better, we went back to the primary care doctor six months later which was then followed by a visit to a local neurologist. John continued to struggle with his speech and was showing morer ratic behaviors. He was physically healthy. It was his brain that wasnt. After months of Unanswered Questions and new combinations of medications to address the symptoms, john started seeing a psychiatrist. The psychiatrist was the first one to suggest that these symptoms could be memory related. I tried to get john in to see a specialist at several facilities in pennsylvania but each of them had a sixmonth wait. The memory and alzheimers Treatment Center at Johns Hopkins had a threemonth wait and so thats where we went. If there were more trained specialists we might not have wait so long or travel to far to see someone. After our threemonth wait, john and i knead first of what would be many drives from our home in pennsylvania to baltimore, maryland for john to have a full neurological work. E team wanted a pet scan but unfortunately, it was not covered by our insurance. After a wave of testing john was diagnosed with alzheimers disease. We decided to help the next person going through the disease. It was important for us to not be complacent. We got involved with our local alzheimers chapter. John participated in several Research Studies at hopkins and ne day decided to get that pet scan. He wanted to donate his brain to research after he dies. As john put it, they might not be able to help me but what if my girls get it . We also decided to live our lives fully while john could. We went out with friends. We made regular trips to new york to see his oldest daughter. I did anything to making him happy in the course of this excuse me, and we had as much fun as we could. That does not mean we did not face our share of challenges. As time went on john always needed supervision. If i needed to take a shower, i would have a neighbor come over to watch him. I would do things around the house at night while he was sleeping. And the first time you have to help your spouse in the bathroom is traumatic and people dont tell you about that. Because of his age, john is not eligible for many programs available to people with alzheimers. Many of these programs are only for people turnover age of 60. Or they are aimed at people with physical disabilities. I could get help if he had lost a limb. But i could not because of di men dementia. You cant find someone to help, help you, youre stuck. I was able to get john into a program. I could go Grocery Shopping or run other errands without worrying about john. The difficulty in communicating was a surprise. When he couldnt find his words or had trouble speaking we had to communicate through what i came to call charades at the gallaghers. We had as much fun as we could in much dire circumstances. After johns diagnose we talked about what he wanted as the disease progressed. We talked about the likelihood of john needing to be in a nursing home and planned his funeral. I remortgaged our home hoping to care for him as long as i could. We renovated our first floor to include a full bath and to make the home handicap accessible to anticipate his future needs. Medicaid helps to cover the cost of johns nursing home but i pock. Ay 1,850 out of that means i dont go out unless a friend can pay for me. I work with a limited grocery budget. I participate in activity that dont cost money so that the resources i do have can go to my husbands care. When someone has alzheimers, its not just the person who gets sick, its the whole family. The disease takes a toll on a community of people. Without our friends, family and neighbors i would not have been able to care for john. John and i believe that you cannot sit around and go boohoo. You to do something. Thats why i wanted to be here today and why i participated in the alzheimers Advocacy Forum for the first time this year. This week i joined 1,300 advocates to make a difference here in washington. We are here to speak on behalf of the five and a half million americans to advocate for their care and to fight for research. Alzheimers is a fatal disease without prevention or slowing its pro gregs. Investing in research is the only way to change that Alzheimers Research is funded at 991 million. But the scientists at the National Institute of health say they need more toward ending this disease. Researchers at the n. I. H. Asked for an additional 414 million for fiscal year 2018. As a caregiver and advocate i am respectfully asking congress to fulfill that request. Today john is 588 and in the end stages of alzheimers this disease has ravaged our family. But that doesnt mean we have to give up hope. Something positive has to come out of this and its inspiring to be here on capitol hill for the first time with so many others like me. And we are all counting on you to take action so we can once and for all end alzheimers. [applause] sen. Collins thank you. Mrs. Gallagher, youre getting a tanding ovation. Thank you so much for that heart wrenching, yet, inspiring testimony and for sharing your ersonal story with us. Doctor, you talked about the potentially major impact that Lifestyle Changes could happen on the incidence of alzheimers disease. Why would exercise and diet have an impact on the accumulation of beta amaloid in the brain . Whats the theory . Ill troo to be succinct. Its a gray question. Some of these lifestyle factors most likely work by decreasing the am of amaloid production. A good example might be with sleep, for example. Where we know theres a complex interaction with sleep and amaloid accumulating. Other factors work in an indirect way by enhancing reserves so making the brain more resill dwronet the fact that there might be amaloid already there. We think with physical activity its probably a multipronged effect. We think there have been beautiful studies show that the hipacampus increases with physical activity. Its the part of the brain most relevant for learning and memory. Theres something going on when people actually exercise. We think its new neurons, new connections. So its a fascinating, fascinating area of explanation. We dont have all the answers. But theres a lot of really interesting clues and so it sounds it sounds like, oh, just do diet or do this or do that. But most of the things that i chose to discuss are the things that i think have the best evidence and actually have a lot of bileology buyology explaining why it may work. Is there evidence that a mediterranean diet might have an impact. I didnt discuss diet as much because i had a limited amount of time. I would say that the area of diet is a very interesting one. A lot of interest in it. But not as much work that we know so far. So the idea that single nutrients say vitamins or omega 3 those have been studied and havent worked out so well. The field is now shifting towards more of a pattern of diet. So as you allude to, a mediterranean diet, a healthy diet, where its not just one nutrient but the whole shabang and thats looking much more promising but again we still need more work to know definitively. Sen. Collins there have have been Clinical Trials that have been cleared some of the plaque tangles from the brain. And yet it appears that it did not restore cognitive function. Do you have a theory about why that is the case . Yaffe thats exactly my expertise. Sen. Collins you know more than we do. Ive been impressed with your knowledge. Theres been a lot of hope that f you can get rid of the amaloid in the brain that that might improve cognitive function and delay, prevent alzheimers. It looks very promising but were not there yet. So some of the trials have either had to stop because of side effects or they didnt work as well as they did in the animal models. Again showing us that the brain is much more complex than than we thought. And that this is just going to take more work but i think were on the right track. Sen. Collins thank you. Dr. Callahan, so many older individuals rely on their doctors as the trusted source of information and council and youve underscored the critical goal that primary care physicians can play. Yet, youve also suggested in your testimony that the overwhelming majority of primary care doctors an other allied Health Professionals have completed little or no formal training in providing care for people with dementia and advising their caregivers as well. With that in mind, im concerned president s proposed budget doubt the Geriatrics Workforce Enhancement Program because we now as you illustrated that theres a real shortage of trained individual who is can help caregivers or even act as caregivers. This is the only federal program that supports the education of doctors, nursing, physicians and other Health Professionals who choose to serve our nations senors. How might these cuts affect the supply of Healthcare Professionals who complete training in geriatrics . Dr. Callahan one of the sad parts of this as you mentioned that this is one of the last programs left in order to help support the training. What people may not know is that geriatric Workforce Enhancement Program is not just focused on physicians, its focused on nurses and social workers and other care providers as well. We are lucky at Indiana University and the state of indiana that we have a geriatric Workforce Enhancement Program. And it is the singular place also where we can teach doctors how to work in a team. People dont necessarily know how to work in a team. They werent necessarily trained to work on these interdisciplinary teams. They dont know that theres a lot that the nurse working alongside of them could do or the social worker working alongside of them could do. So the geriatric Workforce Enhancement Program is almost like, well, this is one of the few things left. Why would you want to get rid of it . So its very important and its exactly the kind of program that were talking about also that can reach provider who is have already left their formal education because we can go out into heir offices and places where they practice and show them tow ho redesign their practices. Sen. Collins mrs. Gallagher, im not asking you questions because senator casey will ask you a lot of questions. But again, i want to tell you how moved i was by your testimony. Mrs. Gallagher thank you. Thank you for having me. Sen. Casey i reiterate those expressions of gratitude. I cant even imagine what youve been through like so many members of this wider family in the audience. I guess one question i had was you mentioned that there were times when you werent you didnt think you were prepared for what was happening or you had to provide a kind of care that you may not have had much training or warning about. Anything in particular you would anything in particular you would hope we would be able to tell people as they embark on a caregiving mission, what you didnt hear that you hope that others would . Mrs. Gallagher my mother had alzheimers at 80. John having it at 50, i didnt realize that could happen. Educating the public in general. I am technically an artist. So believe me, being a caregiver was not exactly in my field. But as wife, that is what you do. So i did anything i have to. It would have been easier even to just find help. I called the agency on aging in the county. I was told, he is under 60, we can help you at all. We cant help you at all. Thankfully there was the Alzheimers Association. They helped. Frequentlyur hotline got calls at 2 00 a. M. By me. There were various support groups i found online that were helpful to talk to others about my position. Some of the support groups are international. There is always someone awake you can talk to. It doesnt matter what time of day. Hopefully someone in the group had a similar experience. The difference between what happened to my mother and my husband were very different. Each case is different. Sen. Casey i dont want it to bring you back to times that were difficult, but it is helpful for us to hear direct testimony about what you had to live through. Most difficult part . Acceptance,er the the friends and family. You have some people who go away. Its not contagious. Like, aremes you feel we contagious . You learn who your friends are. That was one thing. You are so alone, is the other. You are very much alone. You are so busy taking care of them that and you have to see them. To feed them. Sometimes it would take 7 00 in the morning until noon just to have him bathed and dressed. Now it is time to feed him again. You dont get that time. To get a break is very difficult. To find someone, especially at her age, because we did not have many peers that were retired. That was hard. I was lucky. I had a very good friend and wonderful neighbor across the street who helped me a lot. She was a stayathome mom. I was thankful that she was there to help me. Lpedusbands best friend he us. Every monday he sat with my husband so i could go to therapy. Therapy is a constant for me. Is a godsend for me. My husband went to therapy as long as he could communicate to deal with the issues h we both had. I found that to be the most important thing in my life was the help that i got from the therapist. Sen. Casey that is helpful for us. Last question, your health care coverage, did you have the benefit of the state employees . Mrs. Gallagher you bet. Thankfully. That covered therapy. Scan. Hing but the pet that was 16,000. John said, why . Hopkinsor said thankfully had a Research Project that involved pet scans. Sen. Casey i am out of time, but thank you very much. Senator warren . Sen. Warren thank you for the work you have done to draw attention to this crisis in america. This disease is tremendously painful for families who live with the horrible experience of losing a loved one through it. This disease is also wildly expensive. I know that the share talked about this. Billion pernds 259 year on alzheimers disease, including 175 billion for medicare and medicaid, and yet nih spends less than 1 of that amount on Alzheimers Research every year. [applause] sen. Warren yeah. Happen ifghs will not we are not funding our scientists and keeping in the fight as they push every day to make progress. Let me see if i can ask a couple questions. Dr. Yaffe, you started your work on cognitive decline two decades ago. To we know more about dementia in older adults today than when he first started 20 years ago . No question, absolutely. Sen. Warren what role have nih grants played in your ability to stay in the site . Have any have you received . 15, and another was colead. E i i could not be doing what im doing without nih funding. Far the most important funder of medical research. It is particularly important for young people. We are talking about the importance of the geriatric workforce, that we also have to talk about the importance of the physician scientists in general. Once they finish their training, they are experienced are expected to get a career grant award, from the training stage to the independent stage. It is critical that nih fund this. Sen. Warren we will lose our researchers. Yaffe it is the clinician scientist that have one hand in patient care and understand the issues, and the other trying to solve this problem. I cant tell you, having served on the committee at the nia, you saw wonderful people that did not just quite get a good enough score. You had a feeling they were not being able to stay in science. I cant emphasized training enough for that transition period. Can, yourn i caf i Research Examines how to improve the care that older adults with receive and depression from their primary care physician. Has support from nih made a difference in your work . Dr. Callahan i would not be here without nih funding. One of the things that we watch as we are marching along is, originally the nih is funding you as an untested junior scientist with Career Development awards, and with an opportunity to go in different directions. They are investing in you, but holding you in line holding you in science through their support. When that is successful we go on to independent grant funding. University ndiana anda center splinters off, we can attract more people from a wider discipline. s each stage in a person career you need the nih to consistently be there. Sen. Warren i know that caring for your husband was a tremendous responsibility and how painful it must be for you to know that scientists will not be likely to come up with help in time. But that you are still here, arguing, advocating on behalf of of future awesomeness patients and future alzheimers patients and caregivers. Can you talk about the importance of research as you see it . Mrs. Gallagher we need help. We need a cure. I am worried about my husbands two daughters. The oldest is 32. I would hate to think she only has 15 good years left. She has a sixmonthold and threeyearold. I hope to god that my grandkids and kids dont have to worry about this. There has to be research. Through, it is a life of daily torment to keep everyday life. Its absolutely necessary. It needs to be cured and it needs to be cured as soon as possible. Sen. Warren thank you. [applause] sen. Warren we need more money for nih, not less. Thank you. [applause] senator donnelly . Sen. Donnelly thank you madam chair. To mrs. Gallagher, god bless you and what you are doing. It is gods work in every shape and form. To dr. Yaffe, thank you for your work. Dr. Callahan, we are so review. So proud of you. We have a large rural population. You shared that Rural Americans live miles away from necessary services. Could you elaborate on challenges that face rule andicans with alzheimers, what we can do to ensure everyone with alzheimers has access to help . Dr. Callahan about one out of every five people with alzheimers disease is in a rural area. All day we have been hearing about how caregivers feel alone. You can really get much more alone than being a caregiver of alzheimers disease in a rural area. It is the lack of services. It is the drive. I mean, it is a lot of work to take a loved one with alzheimers disease, put them in miles, ande than 50 all of the things that could go wrong in that transportation event. We other problem is that have heard about the importance of neighbors and community and church. Sometimes even those are farther away in the smaller communities. T people have been trying minnesota has been innovative this way, wisconsin has been innovative this way, to leica technologies. This has been true for a lot of rural health. We have heard mrs. Gallagher say, you can connect on the internet as long as it is not somebody trying to cheat you or steal from you. We have to reimagine the workforce. Who visited that is in that Community Already that we can train to help, even if it is to visit someone for an hour or two . It is a special challenge. Sen. Donnelly it is an incredible burden for that caregiver, isnt it . Dr. Callahan absolutely. You hear these terrible stories. Stories of a husband who is worried about his wife wandering, so he ties the two of them together with string. What else is he going to do . She gets up at night and wonders. Or sad stories where people are flocking are locking people in, they have no other options. In terms of cost, who are you going to call . You are going to call 911. It was ant an emt, direct care worker that could help you give a bath. It is an incredibly lonely experience to be a caregiver in a rural area. It is hard for the recipient has well. Noted in many you other countries they have conducted multidomain trials to study factors on reducing the risk of alzheimers. Reason why these trials have not been conducted yet in the United States . Dr. Yaffe i think there has been a lot more interest in lifestyle and modifiable factors in europe, canada, australia for example. The u. S. Tends to be focused arma and technology. That is one of the big reasons. The tide is turning. Pipe within a grant to do such a trial in the u. S. I think there is growing interest. I am optimistic we will be part of this Research Direction as well. Sen. Donnelly i want to thank the panel for your courage and your devotion to others. Thank you. I want to thank all of our Witnesses Today for your powerful testimony, and the important work that you do each and every day. My thanks also to all of the advocates who are here, storming capitol hill, making the case, arguing for more funding that will lead to effective treatments, a means of prevention, and ultimately a cure. We arent making advances in understanding are making advances in understanding the arc of alzheimers from but that arc cure, is long. Every 66 seconds someone in our country is diagnosed with alzheimers disease. Ending this trend has to be an urgent National Priority. We know that we can do better. We can do better in the way that we care for those that are living with alzheimers, and we know that we can do better in training our medical personnel. We know that we can do better in helping our caregivers who put 24 7 endless number of days. Congress can do better in funding the Vital Research that one day will lead to the end of this disease, or at least a means of managing it as a chronic disease, as dr. Yaffe said. Many of you have traveled long distances to washington to share your stories and events the fight and advance the fight against alzheimers. Represents purple hope, and you are making waves. I ask that you keep at it, you are making a difference. Our Committee Members are also committed to this cause. As i listen to the testimony today, one thing that we can do and i should have talked to you about this in advance for us to lead a letter, and we would hope to get the signatures of every member of the aging committee to send a letter to the president in opposition to the cuts to nihs budget, but also to the geriatric Workforce Development fund, which is also important. I think it would be a really powerful bipartisan step forward signatures ofthe every member of this committee. Youre in . [applause] madam chair also in on that plan as well. Sen. Collins that is great to hear. Committee members will have until friday, april 7 to submit questions for the record. Senator casey, do you have any closing words . Thank you for calling this hearing. We know why she is madam chair now. We are grateful for that bipartisan mission that she just gave us. It wasnt too, if clear. I want to thank those that were here for a good part of this meeting. To the people in the audience, and so many millions like you across the country, you may not on some days feel like you are overcoming something, you are not winning, but in so many ways, you are. In this part of your life, you have led a quiet triumph in life. That is much to be proud of. We are glad you are willing to share that inspiration with us. In addition to the obvious and central role played by funding, your work and your stories and family stories will help us win this battle. God bless you and thank you. [applause] thank you all again. This concludes this hearing. [captioning performed by national captioning institute] [captions Copyright National able satellite corp. 2017] captioning performed by the national captioning institute, which is responsible for its caption contents and accuracy. Visit ncicap. Org i am concerned when countries try to shut off Internet Access or try to monitor the internet in a major way. Theres a lot of pressure on he intermediaries, the facebooks, googles, twitters, to suppress the communication of these people who are pro isis. So thats one of these fine lines that you have to draw in internet governance. Our search function allows teachers to search and filter by date, person, key word, topic, and grade level. Short videos paired with vocabulary and discussion classes that make it more accessible. I love the bell ringers. A lot of times i dont use them as acktull bell ringers but in conjunction with an activity a were doing that day. The new website is something thats just fabulous. My students use it regularly. 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