Early on set alzheimers and also appeared before the senate aging committee. The hearing will come to order. Good afternoon. It is my pleasure to convene this afternoons hearing to assess our nations process in combatting alzheimers disease since the enactment of the national alzheimers project app which i co authored with then senator in 2011. I dont need to tell the people in this room what a devastating disease alzheimers is it exacts a tremendous personal and economic toll on the individual and family and authority. In addition to the human suffering it causes. Alzheimers cost the United States 226 billion a year including 153 billion in costs to medicare and medicaid. These will skyrocket as the baby boom generation ages. Already our nations most costly disease alzheimers is projected to cost more than 1. 1 trillion in 2050 if nothing is done to change its current trajectory. Its also one of the leading causes of death. Its the 6th leading cause of death overall and the 5th leading cause of death for those 65 and over. Others put the mortality rate much higher. Theyre right behind cancer and heart disease. Most frustrating alzheimers is the only one of our nations deadliest diseases. Without an effective means a prevention treatment or cure. It is now estimated that 1 and 2 of the babies reaching 85 will develop alzheimers. As a consequence chances are that the members of my generation will either be spending our golden years with alzheimers or caring for someone who has it. In many ways its the defining disease of this generation. If we had to prevent alzheimers from becoming the defining disease of the next generation, it is impair tif that we dramatically increase our investment in Alzheimers Research. Just take a look at this chart. At a time when the United States is spending 226 billion a year to care for people with alzheimers, we are spending less than. 3 of that amount. Less than 600 million a year and thats an increase that many of us have worked for. You can barely see the expenditure level on that chart. Alzheimers receives funding that is clearly disproportionally low compared to its human and economic toll. Look at the second chart. We currently spend 5. 4 billion a year for cancer research. 3 billion a year for research on hiv and aids and 3 billion for cardiovascular research. All investments that have paid dividends. These investments in research for other diseases have yielded tremendous results. Patients have access to new treatmen treatments, death rates are increasing. Surely we can do more for alzheimers and other diseases of dementia given their human and economic price. Fortunately theres Promising Research that holds hope for alzheimers patients and their families. The Research Community is poised to make advancements but Adequate Funding is critical to advance this research. The National Plan to address alzheimers disease has as its primary goal to prevent and effectively treat alzheimers disease by 2025. To meet that goal, the chairman of the Advisory Committee on Alzheimers Research care and services, dr. Ron peterson whom we will hear from shortly that we will need to devote 2 million a year to Alzheimers Research. At first that might seem like a lot of money but when you compare it to the 226 billion that were spending caring for people with alzheimers its less than 1 . And thats the context that we need to put it in. Thats why i introduced a resolution with my colleagues stating that the senate will have the funding spent on alzheimers in 2016 and develop a plan to meet the target of 2 billion over the next five years this afternoon or perhaps tomorrow the budget is on the floor today. I will also be offering an amendment to the budge which i have pleased to say is cosponsored by my Ranking Member senator mccaskill and we will also be calling on the budget to reflect that kind of investment. This is an investment that we simply must make to alleviate suffering and to prevent our Health Care Programs from going bankrupt. I want to acknowledge all of the advocates who are here today from all over the country and we need you to educate members of congress and we hope that your presence today will be a powerful statement to all of our colleagues that they too need to help us solve this devastating disease. Thank you. I want to thank the chairman for her commitment to this issue. I think it speaks sos to the people in this room that the chairman has scheduled this hearing so early in her tenure as the chair of this committee. That should be a signal to you that she is committed and i can assure her and you that i too am committed to the issues that she has eloquently outlined in her opening statement. I think that with the chairman add an advocate on your behalf were in a very good place. I want to thank all of you for being here today from all across the country. Your spirit is inspiring. You have faced enormous personal challenges. Years of frustration, pain, sorrow, moments of hopelessness, and yet you find the strength to come here from all over the country and make your voices be heard. It is democracy at its finest hour farce im concerned. I look forward to hearing the testimony today from a member of the Witness Panel that is from the missouri delegation here in washington today. Ly have an opportunity to introduce her more thoroughly in a few moments but she is here as a caregiver. And her experience in navigating the medical, financial, and Housing Systems i think is probably representative of many of you in this room. I look forward to hearing her testimony and seeing what we can do specifically to help those who are helping care for those with this serious disease. At one point many people believed that alzheimers disease was a normal part of the aging process and that Treatment Options were either hopeless or unnecessary. We now know today thats just flat wrong. If we make the investments now we can, in fact, make treatment effective and we can make those treatments available to millions of americans and, in fact, citizens of the world. Effective treatments are necessary to alleviate the tremendous human, economic and medical toll this poses on our nations families. We need to do something soon because this is a crisis. The cost for alzheimers patients is set to reach 1 trillion over 1 trillion in just 2050. Just think about that. A trillion that is not a sustainable cost for individuals, families, or our federal budge. The only caregivers are the unsung heros that provide the largest portion of care for individual with the disease. Caregivers typically experience more stress, anxiety and lost product activity as a result of their increased responsibilities. While family caregivers provide needed support for their loved ones as long as they can many patients require around the clock care and are moved to nursing homes. According to the cdc nearly half of all nursing home residents in the United States have residents with alzheimers diseases and with a few longterm care Financing Options many families, in fact, probably most families depend on the Medicaid Program for their nursing home funds. It is estimated that 28 of the Medicaid Budget is spent on longterm care services. I know that she can speak of some of the challenges of accessing medicare and help for her mom. By the way her mom worked hard all of her life and retired with a pension but that was not enough to cover the high cost of nursing home care. It is important that were talking about these issues this week because this is a week were voting on the budget. Ill worried for our country and for families like hers because the budget we are currently debating does massive cuts to medicaid. Nursing home care and other services will be slashed by 5. 4 billion in missouri alone these are middle class families devastated by these cuts. I want to echo the statement of the chairman about Research Government investment in medical research allowed our nation to be a beacon of the world for hope. For medical advancement. For being the country that is looked to and that adds to our National Security because were seen as such a leader in the world on medical research. I am hopeful that the amendment im ccosponsoring will be a moment that we cannot continue to forget our responsibility. Theres nothing more deserving than alzheimers. Yesterday they released their 2015 facts and figures report that found that about half of all people with alzheimers disease or their caregivers are not even aware of their diagnosis. That is incredibly troubling. We cant go back to the old days when people were not properly informed of their diagnosis in a misguided attempt to spare them the truth. Not only are many individuals not being alerted their diagnosis but many believe the mortality rate is much higher than projected. Its the third leading cause of death in the us. Following behind cancer and heart disease. We need to tackle this crisis head on and provide families with as much support as we can. I look forward to hearing the testimony about how we can confront the looming challenges and plan for treatment by 2025. Thank you for your leadership chairman collins. I also want to thank you for being here today. Thank you. I wanted to make sure that i corrected the record. May i can added . Absolutely. Id be delighted. I want to also say that im so glad that senator tillis is from North Carolina. Senator bloomenthal from connecticut and senator donnolley from indiana i cant here. They care deeply about this issue. Im pleased that joining us today on the Witness Panel is Barbara Smith and her husband dan gatsby. She is a wellknown supermodel that graced the cover of fashion magazines. She is also an accomplished restaurantuer for those of us that have eaten at her restaurant at union station. Retailer, actor and author. But nowhere are her grace, beauty, and courage more evident than in her fight against early on set alzheimers disease. He has stood by his wifes side every step of the way. By sharing their story, she and her husband are helping to make a real difference and we thank you. Next week will hear from dr. Richard hotis who is the director of the National Institute on aging at the National Institutes of health. He also represents nih on the hhs secretarys federal Advisory Council on Alzheimers Disease Research cure and services. He also coordinates the nih Research Efforts under the National Plan to address alzheimers. We will then hear from dr. Donald peterson. He is the director of the mayo clinic Alzheimers Disease Research center and study of aging. In 2011 he was appointed to serve as chair of the Advisory Committee. Kimberly has already been introduced by our Ranking Members. She is from st. Louis and well be talking about the challenges that our nations many caregivers of alzheimers patients face every day. We welcome you as well. And finally it is a great pleasure to welcome to the committee dr. Heidi wireman who is with us here today for more than ten years. She has served as a physician at Maine Medical Center in portland, maine and she specialized in the challenges that both physicians and caregivers face again, its truly touching to see the sea of purple gathered in the hearing room today, but its also a stark reminder of how many individuals and families lives are affected by alzheimers. So i want to thank the advocates who have traveled to washington. We look forward to hearing from the testimony and we will start with bee smith. Go ahead. Okay. Okay. Thank you all for having us here today. Um, i have i havent been spending a lot of time down here, but, um, im getting back on the saddle these days. So, um, its been a tough time for me because i do have early onset alzheimers disease. And im here because i want to make though a difference. Im here because i dont want anybody else to have to go through this. Im here to ask to you make a difference, not just for the 5 million americans who have alzheimers and their caregivers, but for the future generations who will face that. Um, this has been this has this has been something thats very new to me because i have been so healthy for such a long time, that ive never had anything like this. But what im going to do is im gonna fight. Im gonna do exactly what i can to be the best and to be better than the other person that i really even was so that there are lots and lots of people out there who are probably feeling the way im feeling, like this should never have happened to me, that type of feeling. Im sure that there are many people. But there are many problems out here also. So, i i feel that im ready to to work. Im ready to do what i have to do to be the best that i can be and to help as many people that i can help. And if i have to tell somebody that they shouldnt do something because, ill do it and they will tell me i want to do it or i dont want to do it. But its important to me its always been health and wellness has been something that has been a big part of my life and a part of helping young people. And so today, im excited to be here. Im happy to be here. And i thank you very much. Ive got a lot to do in my future and im gonna do it and im gonna do it the best way i can and if i can help people and they can help me and we can do it together, even thats fine. But however we do it, we just have to do it. Thank you so much. Mr. Gasby. Thank you, chairman collins. I want to thank you for having me. Ranking member mckulski, to the members of the committee, you know, i love my country. Im proud to be an american. Im a kid from brooklyn and i never thought i would have an opportunity to try to make a difference. And this is the one time that i know that i can make a difference because ive seen what my wife has gone through. Ive seen a woman who virtually could do everything, who could sing, who could dance, who could look at food and taste it and then cook it exactly the way it could be in a cookbook, who did a television show, who did 100 radio and television commercials, who basically always gave back. And now, has to wait and help wait for people to help her. You know, im reminded of a song that, of all people, jayz and kanye west wrote, and its and theres a lyric in there, called the pain aint cheap. And the pain airport cheap for the 5 million americans who are suffering with alzheimers disease. The pains not cheap for the 15 million caregivers that each and every day, every waking hour, have to struggle, as we do, as a couple, my best friend, watching her get up, try to do things, look me in the eye and say, honey, im broken. And when you see someone that you know knows that they cant do what their body and their mind has told them for 55, 60 years, you realize that youve got to try to step out, step up and make a difference. Im here to tell you that the pain is not cheap because if we dont do something now, the price we are gonna pay 10, 15 years down the road, by 2050, when its estimated that 15 Million People will have alzheimers. As you have so accurately said, the cost will be over 1 trillion. You know, the greatest resource that we have in our country is our intellectual ability. The greatest resource that we have in our country is our twoparty system, democrat say democracy that works. Much of the great eft resource bev is what we learned from generation to generation that we pass down. Well, when you have alzheimers, what you have is people lose that perspective, people in their 40s now, 50s, 60s and beyond. You lose the ability to give people behind them the sense of accomplishment, the sense of understanding and the sense of hope. You know, we have a modernday social tsunami. This is what alzheimers is. And when you look at it, you look what my wife has gone through, what is ravaging the africanamerican community, im twice as likely to have alzheimers as my caucasian counterpart. You look at the fact that within that community, my community, we are getting tested and treated and found at a later stage, so, the chances of being able to retard or handle the situation is going to be more costly than ever, you realize that weve got to stop it right now. Now, weve invested millions of dollars, billions of dollars, as you said earlier, in heart disease, in cancer, but we pay a pittance to alzheimers disease. And we know that by using the pet scan, we can determine that theres amyloid beta plaque in the brain and if we find out that that has happened, we can begin the process of taking tear taking care of ourselves through diet, exercise, through holistic practices and through that, we may be able to ward off a slowdown, so we can allow the government funding and intellectual capacity we have in this country to developed means and the methods to make a difference. Im here today because i believe in america. You know, 30 years ago, if you walked around with a telephone, you had it on your back. And today, when you walk around, its in your hand. I know that we can take the gene code and break it down. That used to take forever to even figure out we had genes and now we understand the differences in different population groups. I know that drug trials make a difference in different populations that will help the efficacy of drugs, test and treatment and bringing positive, powerful new medicines to market. I know that we have within the breadth and depth of this great country the people who are committed. Last night, i was at the alzheimers dinner and i saw 1,000 peopleplus who all know the pain from alzheimers is not cheap, but what i saw there last night was a team. I saw a group of people from the deep south to the far west, from the heartland of america to new england, all looking each other in the eyes and saying, you know what, were at the Tipping Point and we are going to push this thing over. So i come here today to tell you, i dont believe in big government. I believe in good government. And i know that whats happening in this committee is going to change the face of the alzheimer community. Last night, i sat at a table with ten other people and there was a young boy there. His name was tyler. And while we were talking about all the things that were going on and we were listening to lisa genova who work the book still alice, i was looking at him and all i was thinking, here is a 12 or 13yearold, if i said to him right now, whats a cassette deck, he would go huh . If i said to him what is an 8tracks he would go what . I want that young man that young boy, tyler, to when his kids with his age, he can look back and say i remember when we conquered alzheimers and their kids are gonna say, what, huh . We have it within our capacity here in this country to make that difference. And i want to be a part of it, not just for her, but for the future tylers in this country. Thank you. Thank you both for such eloquent testimony. [ applause ] thank you so much. Dr. Hodes. Thank you, chairman collins and Ranking Member mccaskill and members of the committee. Let me begin by thanking you for the opportunity to be here and for the support that you, congress, the administration, have provided to nih and the research and to everyone in or near this room for the opportunity to be a part of what we are doing. I would like to spend the next few minutes just giving some of the examples of the state of research in alzheimers disease, the state which gives us great hope, hope greater than ever before the progress we are seeing now will lead to improvements and ultimately the ability to treat, cure and prevent alzheimers disease. If we can move to the next slide this probably needs no elaboration. This is as referred to by chairman collins, but an illustration of where we stand now in terms of the number of people affected with alzheimers disease, 5. 1, 5. 2 million and projection for its increase, two to threefold in the next decade it is we dont change that course. A tonight right in the bars illustrated are the estimates of costs, already showing alzheimers disease to be the most expensive disease and condition we face in this country with projections of it again increasing severalfold as the population at risk increases. But theres reason to think, to hope and theres an imperative that we succeed in changing this trajectory. The next slide. Some examples of what was alluded to, dan gasby referred to imaging as an indication of the ways in which we gain insight into whats going on with alzheimers disease not possible just a few years ago. These are scans that look at amyloid a beta and tow, two of the lesions that were saw 1906, recently only identify in autopsy. This is our ability to image. You see the slide show here, cognitively normal individuals with little of these deposits. The next slide shows in can contrast an individual with alzheimers disease affected by cognitive dementia and change. You can see the increase in plaques and tangles that form in those brains but the situation is more complex and challenging than that. We look at the next slide, the next individual, cognitively normal who has accumulations of amyloid and tau in the brain and gaping insights only now into our ability to recognize these as potentially very early stages of disease before symptoms, potentially before there is irreversible damage done, we can begin to intervene and attempt to prevent progression and progression of symptoms. Another illustration of the progress made, apologize for the difficulty in reading it, but it is a time course of genetic discoveries and it shows in the early 1990s we discover ed those genes responsible for very rare but familial forms of alzheimers disease and about 15 year, we didnt discover any new genes until the modern technologies of sequential gave us a proliferation of the jeeps genes we understand. Remember those genes that caused alzheimers in families and turn to the next slide, able to identify in these rare and tragic families, such as the one illustrated in this study, a family in the south American Country of colombia by imaging, identifying individuals years and decades before we know they are going to have the disease, changes which occur in the brain. The bottom left is the relatively normal scan of individuals in their 20s, whether they have this alzheimers causing gene or not. The right, the individuals who did not inherit the gene from their pants look relatively normal in the brains whereas the bottom right, those individuals with gene carriers already showing signs of disease decades before symptoms and exactly in these individuals we are now beginning to do studies, prevention study buys intervening with treatments before damage and loss of cognitive functions occur with a new generation of hope we can make a difference with this kind of treatment. The next slide. Just to emphasize that these studies are being done in great and novel partnerships with public and private sector investing to the common goals of identifying new targets for alzheimers disease and studies to attempt treatment and Top Companies where we can monitor the changes in biomarket, and tell early in the course of these studies whether there was success or no success in the interventions much the next slide. Turn to an important aspect, as we search for cures and early insights into moll electrical diagnoses, we recognize the importance of doing all we can to take care of individuals living with this disease and care for them, an example of a caregiver study reach, study designed to look at interventions that would make life better for people with alzheimers disease and those that care for them and the study, as any other Clinical Trial judged by success, enormously successful and enable people to live at home longer, protect the health and prevent against the increased risk of disease in caregivers so common and now being disseminated here through the va and administration on aging nationwide in an effort decrease the burden of those who take on the most important job of caring for those living with alzheimers disease. The next slide. Finally, just want to illustrate that under the aegis of the National Plan, which has provided a new and intensified focus for disease, we have a spectrum of commitment, illustrated here. The goal of curing, preventing alzheimers disease by 2025 along with equally important goals having to do with care, enhancing Public Awareness and tracking progress through time. I thank you for an opportunity to give you this brief summary of some of the reasons for real excitement and optimism and look forward to addressing any questions that you may have. Thank you. Thank you very much. Dr. Peterson, welcome back. Thank you, chairman. Good afternoon, chairman collins, Ranking Member mccaskill and distinguished members of the Senate Special committee on aging. Id like to thank the committee for the opportunity to discuss the importance of alzheimers disease for this country and also commend senators collin was and klobuchar for introducing the resolution to double the funding for Alzheimers Disease Research in 2016 and to achieve the goal of increasing the annual Research Budget to 2 billion in five years. As you know, in 2010, congress unanimously passed and the president signed into law in 2011 the national alzheimers project act, requiring the secretary of health and Human Services to generate the first plan for this country to address alzheimers disease. The Advisory Council has just completed its recommendations for the 2015 plan in january. The primary goal of the plan, as dr. Hodes just mentioned, is to effectively treat and prevent alzheimers disease by 2025. This goal is but a short ten years away. An essential feature of the recommendation submitted to the secretary and to congress includes the recommendation that the federal government spend at least 2 billion a year in research on alzheimers disease. As chairman collin was has has indicated, this fig your pales in comparison to what we spend on cancer, hiv aids and cardio vascular disease, yet in those diseases, there have been significant progress made about regard to reduction the number of deaths per year, yet the annual death rate for alzheimers disease is escalating. Again, alzheimers disease is an incurable disorder with no survivors. In 2013, the United Kingdom prime minister, david cameron, used the final event of the g8 presidency to host a summit on dementia. In preparation for that meeting, professor nick fox of University College london and i wrote a commentary for the journal, the lancet, shutting that member countries consider spending 1 of their annual care budget on research. In 2014, the United States spent 226 billion caring for people with alzheimers disease. If we were to spend 1 of that figure on research, woe reach we would reach the 2 billion figure recommended by the Advisory Council and senator collins. Last week in geneva, switzerland, the World Health Organization sponsored the first Ministerial Conference on Global Action against dementia. At that meeting, i presented some figures similar to what dr. Hodes has just shown, as to what the current numbers of individuals with alzheimers disease are in this country what they are projected to be by 2050. Then we superimposed the scenario of what if we delayed the onset of the disease by five years, how would those numbers be impacted . Another scenario is what if we were able to slow the progression of the disease . We might have the same number of individuals, but more people with a lesser degree of impairment or preferably, doing both of those. In a recent report from the Alzheimers Association, it is projected that if a treatment were to be introduced by 2025 that would delay the i dont set delay the on set of alzheimers disease by five years, that treatment would reduce the number of individuals affected by the disease by 5. 7 million by 2050. And save all pairs, including medicare, medicaid and families more than 220 billion within the first five years. As recommended by the Advisory Council, if the government were to invest 2 billion per year, the country would recoup this investment within the first three years after a treatment became available. All of the economic models converge on this point. They indicate that the savings to the federal government would more than capture the increased investment in research in a relatively short period of time with an effective therapy. I would like to come mend my comment commend my colleagues at the department of health and Human Services for their work toward enacting the national alzheimers map thus far. Great strides been accomplished in coordinating federal agencies and improving federal capabilities with respect to alzheimers disease, however a great deal of work needs to be accomplished since we are not close to our goal of effectively treating and preventing the disease by 2025. I can say with confidence that the Research Community is poised to make a significant contribution toward the goal of if Adequate Funding were available. As outlined by dr. Hodes of the National Institute on aging he and his staff have established milestones for the execution of the plan and now with the passage of the alzheimers accountability act, are working diligently to prepare a professional judgment budget to submit to congress outlining expenditures necessary to accomplish the goals set forth in the National Plan. We cannot wait until there is a more convenient time to increase funding for this disease. Alzheimers disease will bankrupt the Health Care System as we know it today. We simply cannot afford to spend ate forementioned over 1 trillion a year as is projected in 2050 to care for individuals with alzheimers disease. The impact on individuals and families is enormous, the cost to society is unstable. We appreciate the difficult constraints under which the federal government is currently operating, but our parents and families cannot wait. With 10,000 baby boomers turning 65 on a daily basis, this problem is not going to be resolved by itself. We are all poised to make a difference, given the opportunity and considering there was a recent report of a new and promising drug made at an International Meeting last week in nice, france, we were encouraged that somethings in the pipeline. Ultimately, it be up to the individuals, such as those on this committee, to make very difficult decisions regarding funding for alzheimers disease and related disorders going forward. We call upon congress to make Bold Decision to alter the course of this disease now that it is not a burden to the next generation and providing them with an intractable situation. The National Plan to address alzheimers disease has established a blueprint that would make this possible and we need your support. I appreciate the opportunity to address the committee. Thank you. Thank you, doctor. Ms. Stemley. Good afternoon, chairman collins, Ranking Member mccaskill, and members of the committee. On behalf of the 15. 7 million caregivers for individuals living with alzheimers disease and other dementias, thank you for the opportunity to testify before you today. Alzheimers is a devastating, progressive and ultimately fatal disease. More than 5 million americans are currently living with alzheimers disease or another dementia. The men and women living with alzheimers are your friends, your neighbors, some may even be your family members. They are business leaders, school teachers, store clerk and construction workers. They are both republican and democrat. And my beloved mothers dorothy stemly is one of them. I am honored here today to share our story and discuss issues facing people about alzheimers and their caregivers. I find the more vocal i am about how this disease has impacted my family, the more i hear from other people who have gone through or are going through similar situations. Today, my mother is living in a Skilled Nursing facility in missouri and im confident that she is receiving appropriate care and she is in the right setting. However, getting to this point was a challenge and there are many families out there who never get the care and support they desperately need to face this terrible disease. For several years, my mother and i were in denial about the changes in her behavior. I did a great job with the rationalizing and denial came to an abrupt halt the morning i received a call from a stranger telling me my mother was in the middle of Martin Luther king jr. Drive in st. Louis, alone and confused. She had slept all night in her car on the side of the street. My mother was a long way from home and that began our journey with alzheimers. My mothers diagnosis was the result of three different evaluations. Doctors performed tests on her, ultimately concluding that it was, in fact, alzheimers disease, so there i was, an only child, caring for my single mother, who had alzheimers. I knew then the world we had shared was no longer. And at the age of 30, i was thrown into a world that was completely foreign to me, a world of alzheimers disease and i felt completely lost. After her diagnosis, we didnt receive much information from her doctors about the disease or much advice on what to do next. A friend of my recommended looking online for help. I found the Alzheimers Association which is the first time light began to shine through the darkness. I was able to learn about the disease, what the diagnosis meant for both myself and my mother and the next step should be considering options for her care. I also learned how to cope with all the emotions i was feeling throughout the whole process. This is important because the stress of being a caregiver was only compounded by the stress that i faced at work. My physical health started to suffer. I would wake up the middle of the night with back spasms and my back pain was so severe that my own doctor recommended i make a lifestyle change just to maintain my own health. I did and now i exercise three times a week and i have been eating a healthier diet, however, the emotional part of it continues to be very difficult for me. And when i see my mother now, it feels like they won every single time. At the time she was diagnosed, my mother was living alone. She had exhibited other warning signs that raised concerns about her safety. For example, my mother started a fire in her condo one day and although no one was hurt, i knew then it was time to consider other living arrangements for her. We moved her into a seniors independent living apartment, which provided her with the security, hospitality and social outlet that she needed. She was able to live there on her own for another four years until her memory loss progressed to the point where additional care and attention were needed. The next step was my own personal nightmare coming true, moving my mother to the Skilled Nursing facility, where she currently lives today. Although my mother worked for 33 years and retired with a healthy pension, the high cost of longterm care exhausted her funds. We needed we needed the Medicaid Program to afford the longterm care and i am very grateful for the assistance. Based on my experience, i know im not the only one who has had difficulty getting help after learning about an alzheimers diagnosis. I have experienced first happened the firsthand in the gaps in our Health Care System when it comes to dealing with this disease. Far too many physicians are not familiar with how to properly advise patients and their caregivers after a alzheimers diagnosis. It took a friends advice, not the health care provide finding the Alzheimers Association about what to even get basic information about what to accept next. No one could ever feel this lost, or no one should feel as i felt back there. There is no treatment for alzheimers disease. However there are many things that can be done to improve a familys ability to cope with the decease, especially immediately following a diagnosis. This is why the hope for alzheimers act, which was reintroduced this week is critically needed. The hope act will ensure families like mine facing an alzheimers diagnosis are providing with Care Planning services to guide them through the next steps. To some extent i feel blessed. I eventually found the resources and support i needed to manage my mothers condition and my own wellbeing. If hope had been around at the time im certain i would have felt much less alone in the fight at the beginning. Until a cure is found we must work to support the family, the care givers and people with the disease immediately following the diagnosis. We need care. We need help. Which is exactly what the hope for alzheimers act would provide. Ive also had the opportunity to speak with many researchers about the current progress that has been made towards the development of a cure for alzheimers. Im disheartened because i realize that despite progress we still have a very long road to walk. Seeing in advancements in other areas as a result of strong federal investments and research makes me think of the opportunity that exists for scientists to develop a truly Ground Breaking treatment for this disease. One that could save families the heartache i feel every time i see my mother. Alzheimers disease is one of the worst out there. I implore you to work to find additional funding for Alzheimers Research. Research is the only way we can truly create a World Without alzheimers. I thank you for the opportunity to testify today. I appreciate the support of the committee. And its focus on improving the lives of those affected by alzheimers. If there is one thing i would ask that you would take away from my testimony it would be that alzheimers disease not only impacts the diagnosed person but those that love them very dearly. Thank you so much. Thank you very much for giving us your perspective. [ applause ] thank you. Dr. Wierman. Good afternoon chairman collins, Ranking Member mccaskill and the distinguished members of the Senate Special committee on aging. I am very appreciative of this opportunity to be here with you. For who share my experiences treating and working with individuals with dementia and working with their caregivers. I am a geriatrician in maine with roots in oregon and my work is focused on dementia. I evaluate individuals and work with their families at our outpatient center. I also spend time in the hospital working with programs. To prevent complications with older adults who are hospitalized. I work to prevent delirium, which is particularly devastating for individuals who have dementia and experience that it changes the trajectory of their dementia in a very negative fashion. Dementia really is a looming crisis for our state and the nation. Maine has the oldest median age. Nearly 6 years older than the average median age in the United States. Which means we have fewer working aged individuals to help care for our older adults and particularly those with dementia as their disease progresses. Projections from maine are that the 65 and older population is the only population that is going to grow in the next 10 years. Our total population will remain flat at about 1. 3 million. But we currently have about 37,000 individuals diagnosed with dementia. And it is projected to increase by nearly 50 to about 53,000 in five years. Dementia is an epidemic and it will have dire consequences on our economy, our Health System and our Family Structures if we do not act now to do something. Dementia stresses our state in many ways, including increased burden placed on caregivers, both paid and unpaid. A lack of safe housing. Needs for transportation in our rural state and a Healthcare System that is already overburdened. In maine about 2 3 of patients with dementia die in nursing homes. We have fewer younger people which means fewer formal and Informal Caregivers to help. Within our Health System we are having trouble finding suitable places for care. This results in patients remaining at the wrong level of care in an acute Care Hospital when what they need is an environment to care for them with their chronic and progressive dementia. This puts a lot of stress on families, on the patients themselves as well as the medical community providing the care. It creates a tremendous financial burden. Diagnosis and treatment of patients with dementia is not a routine part of Clinical Training for most providers and staff in many care settings. It is really critical our primary care system become prepared to deal with cognitive assessment and Care Planning to provide the resources the individual and families needs to deal with this progressive disease. Currently dementia is a chronic terminal illness. And we need to prepare our Healthcare System and communities to provide planning and support to patients once they are diagnosed, even as we search for that cure. I would like to take a moment to share a couple of stories. I have utilized pseudonyms for these stories. I first met mr. And mrs. Keller about 10 years ago when i diagnosed him with mild Cognitive Impairment. Sadly his disease progressed to alzheimers dementia. And over the next several years he had a gradual decline and developed issues with walking and swallowing. Eventually he began having more issues with eating and started to development frequent pneumonias. I began visiting him in his home, as it was nearly impossible for him to make it into the office. He had support from his wife, from paid caregivers and intermittently from other family. Eventually we involved hospice and he was able to die in his own apartment, as was his wish of his wife and family. During that period i got to know his wife well. She was a very active woman involved in her senior community. She suffered significant anxiety as her husbands disease progressed and required treatment of her own. After her husband passed away i did not see her for a year. And then one day she appeared in my schedule as the new patient. She had developed memory loss. She no longer had a spouse who could help care for her. Her children lived away. They were around in the summer and could not provide support. Mrs. Keller continued to live independently with paid caregiver support and eventually needed to transfer to assisted living level of environment. Her transition did not go well. She fell, had a head injury. Developed delirium and has continued to decline today. She and her husband had tried to plan financially for all of their needs. But their private caregivers are expensive and the money ran out. She now resides in a nursing home. Her children felt very guilty that they were not able to provide the same support for their mother that allowed their father to die at home but the resources are simply not there. We need more flexibility and funding for caregiver support and alternative options for housing to care for individuals with dementia. And i believe in this case we could have had a better outcome. I have other cases and scenarios that i can share but i see im running out of time. So i would like to thank you for taking the time to hear my story. I implore you to continue to support increased funding for the support of caregivers and the individuals with dementia now to support alternative Housing Options and Creative Community supports for individuals with dementia. Ultimately of utmost importance is identifying ways for prevention and cure of this devastating disease. Thank you. Thank you very much for your moving testimony. Ms. Smith and mr. Gasby, when we were talking informally before the hearing you talked about the Public Service announcement that you had made. Could you share with everyone here what you did to try to expand awareness and participation in Clinical Trials. Yes, senator. We are affiliated with the Brain Health Registry. And what the Brain Health Registry does is it goes to get people to participate in giving information so that they could be considered for drug trials. One of the main impediments to getting more funding, more research, more drugs online is that we dont have enough people to participate so that they can be considered for these drug trials. And particularly in minority communities. Theres been a with the tuskegee experiment, with things that have happened in the past, myths and some realities, African Americans and people who are not caucasian are not participating. What most people dont realize is that to bring a drug to market costs billions of dollars. And you need to have a genetic pool, a diverse pool. And so you need different people from different backgrounds. You need women, you need men. You know, asian, you need latinos. You need African Americans. And this brain Health Registries registers folks so they can be considered for these drug trials. And what we wanted to do was we wanted to break down that stigma, that its okay. You know that government does do good things and going to trials it is not going to be the tuskegee experiment all over again. There are so many myths and so many taboos that have been existing out there. And we wanted to make sure by being involved we wanted to let people know we have to do this. Not just for ourselves but for the future to find the right medicines. Thank you. I want to thank you for doing that psa also. Ive had the Opportunity One of the great things about that psa that we did was that it increased the overall participation by, you know, 6 within the minority community. But also overall more people signed up. Because they werent aware they needed this diversity in the gene pool. Thats really terrific. Particularly since African Americans are more likely, as you pointed out in your testimony, to get alzheimers. I think your being out there has really helped to increase awareness. And i thank you both for that. Thank you, senator. Dr. Hodes, ive started visiting research centers. And ive talked to dr. Petersen at length about the wonderful work at mayo. And just two weeks ago i spent an hour and a half at Massachusetts General Hospital talking to the Alzheimers Researchers there. And i must say and i want to share with this audience that i see great promise and great hope on the horizon. One of your charts talked about the imaging that is now possible, which wasnt just a few years ago. Alzheimers could only be diagnosed definitively through a brain autopsy. Now we can do imaging that shows the beta amyloid plaques and the tangles and the tau. And i learned at mass general that there is actually an antibody that can be given when the beta amyloid is developed. And i dont know how effective or what stage that is at. But there was so much Exciting Research going on just at mayo and mass general. I cant wait to go to university of pennsylvania and to other research centers. Im sure there is one in missouri as well. But the problem is, with only 600 million, you cant possibly fund all of those Exciting Research applications. Can you give us some idea of what percentage you are able to fund of the promising projects that are out there . Thank you for the question. It is very much the case that the wealth of excitement opportunities gifted and committed scientists are proposing research far in excess of our ability to fund it now. The answer to your question in terms of percent can be answered in a very real but in a sense superficial way just by looking at the success rate we have for the pay line for applications. So that of the applications that come in in Alzheimers Research we are able to fund now in the range of 11 or 12 . It is easily said that twice that number or more are considered by peer review experts in the field as absolutely outstanding emeritorious support. So even at that level of the research weve already proposed there is great room for more that could be and should be funded if there are adequate resources. Beyond that the ability to initiate and recruit new areas not even yet the minds is a dividend we very much look forward to. And of course if researchers saw a bigger pot of money available, that too would produce more submissions. But 11 to 12 when at least double that number are worthy of funding i think is another strong argument. Senator mccaskill. Thank you. I want to thank all of you. Let me ask it is true this disease also disproportionately affects women, correct . More women than men . And more African Americans than caucasians . Lets talk a little bit about the reality of medicaid in this equation. We have two issues really were talking about here. One is investing in the research. The other is making sure that care can be given. Ms. Stemly, we live in a state where they have refused to expand medicaid. Refused to draw down the federal dollars available for healthcare in our state. And the budget we are currently debating cuts medicaid by another 400 billion. In this country. Im not sure that most people realize the percentage of nursing home patients that are a, suffering from alzheimers, and b, needing help from medicaid. What would you have done and i think there are stereotypes around medicaid that are terribly unfair to women like your mother. Your mother worked 33 years. She had a pension. She had a plan. And then she got alzheimers. And you found yourself having to access Medicaid Services for her longterm care. What would you have done if those Medicaid Services were not available . If there had been a block grant in missouri like the house is done in their budget and the money was gone because it was october, what would you have had to do . Senator mccaskill, i dont know. That thought first of all i was not familiar with the medicaid process until we were thrown into this world. And so there have been many nights through this process when understanding the costs of longterm care and the realities of what we were facing. Because you are now facing the financial fight. Because now you have an extraordinary price tag to this disease. And then you have the emotional, the physical. And then you have that fight to go through. Initially just understanding the costs that we were about to go down this path there were many nights that i was very scared. Because i know she does have a good pension but she doesnt have the pension and we dont have the resources to pay 5,000 plus, 8,000, 10,000 in certain cases a month to have a longterm care facility. I didnt know what we could do if we were going to be denied. I didnt know if she made too much if she had you know, all of these fears come into your mind. Do i make too much . Do i make too little . Am i going to be denied. And it wasnt an option to be denied. I had to have the care. One of the very disheartening parts for this from me. And you pointed it out. Is my mother is a very proud woman. And she did work for 33 years. And she worked for the federal government for 33 years. And shes very proud of it. And even today her mind sometimes thinks she still has to go to work. For the government. And so we, you know, we play and do those sorts of things. But to know that all of those years of work are exhausted by a disease and not transported forward through an inheritance or her grandchildren dont get to see it. And there arent things that she is leaving behind for her family. But this disease is exhausting everything is heartbreaking. So i dont know what we would do. But that alone has been my fear many a nights. And thats why i said, i thank god for medicaid. And at the same time weve never needed for anything. You know, we are i guess a middle class family. And so ive never been in a position to have a need. And that was humbling, to be honest. But i am sure am and are grateful for it because where would we be . Well i sure hope you and all of the advocates in the room carry that message. Because i think there is the the stereotype is harming the Medicaid Program. I think there are people comfortable assuming that the only people who need medicaid are people who havent worked hard, are people who arent trying. No. And nothing could be further from the truth. Particularly when it relates to the longterm care in this country. It seems to me that not Funding Research is dumb. Because it is going to cost us a lot of money. And refusing to fund care is cruel. And so i hope that you all will continue to advocate in every office in the capital on those issues. Thank you. Senator warren. Thank you madam chair. And i apologize for delay in trying to get here. I was also trying to cover a banking hearing. But i wanted to be here. Alzheimers forces families to watch helplessly as their loved ones slip away. The high cost of care also frequently stretches families to the breaking point as youve just testified. According to the Alzheimers Association well spend 226 billion dollars caring for people with alzheimers this year. And by the year 2050, the yearly cost will be more than 1. 1 trillion. Now when the director of the National Institute of Mental Health testified in front of the help committee during the last congress he noted if we can prevent or even delay the onset of dementia we could save billions of dollars. He also said this is really a matter of choosing to invest in research now or choosing to pay up in a big way later on. Clearly congress is choosing to pay up in a big way later on. Congress has reduced the purchasing power of the nih by nearly 25 . And last year, nih spent only 562 million on Alzheimers Disease Research. That is about 2 10 of 1 of what the disease cost us last year. Dr. Hodes, can you tell us very briefly how the reduction in support for nih funding affects you and your colleagues to advance research on alzheimers . Thank you for question. It is the case that the progress is not being limited by great idea os for scientists of capable of carrying out the research but our ability to support it. And as an earlier comment i noted, even if one looks at the number of outstanding applications currently being proposed by scientists and the proportion of those that we can fund, it is a conservative estimate that we could fund twice as much as we do now simply by the ideas being proposed and being moved forward at a greater speed. And that is the first iteration. Undoubtedly with more resources we would be able to recruit new investigators and establish new infrastructure for more innovative approaches. So that is a first order response. So what you are really saying is were funding half or fewer of the potential research avenues that might give us a the cure of alzheimers. Of the outstanding proposals that are currently being submitted to us, yes. Thank you. And dr. Petersen could you just add to that please. I think another ramification of that senator warren is the fact that with the reduction of federal funding there is also reduction of number of new investigators going into the field and that is going to cripple us down the road. If the young investigators see the old guys like myself struggling for funding in research settings, they are saying how am i going to survive . So im afraid were turning off a young generation of investigators. That are going to be the ones that lead us forth in the future. So i see that as a real concern. So high cost right now by not funding Alzheimers Research. High lost longterm. Every member of congress ive spoken with says they support nih and more medical research. But medical Research Takes money and congress has done absolutely nothing to get more money into the agency. The House Republican budget and the Senate Republican budget were released last week and both say they support medical Research Funding but what the republican budgets actually do is lower the budget caps that are already crushing our research agencies. Making it likely that the agencies like the nih would see cuts, not increases, under those plans. Now earlier this year i introduced the medical innovation act. A bill that would boost nih funding by about 6 billion dollars a year. That is not enough. But it is a start. And we can do it without raising taxes. Without gutting critical programs. Without gutting Vital Research and without adding a dime to the deficit. I hope that my colleagues who are serious about funding the nih will join me in this effort or bring other ideas to the table. Because talk is cheap. We have an opportunity to make a real difference in the fight against alzheimers. An opportunity to save billions of dollars in Unnecessary Health and longterm care spending. And to give families their loved ones for more precious time. Were going to miss that opportunity unless Congress Steps up and funds the nih. Thank you madam chairman. [ applause ] senator scott. Thank you. Senator scott, welcome. Thank you chairwoman collins. Thank you for holding this hearing and giving us all an opportunity to interface with so many people that are committed to the cause and for all those folks out there with purple on today, thank you for your investment of your time and your energy on such an incredibly important topic. I know all of your offices have been filled with your enthusiasm and your real life stories. I cant think of anyone here on this panel who has not been impacted personally by alzheimers. And for me at least alzheimers and parkinsons in watching the challenges of our loved ones. My grandmother passed away in april 29th, 2001 and just seeing the devastation and challenges we faced. But also those who have been support systems. If you have been blessed with the opportunity to care for someone with alzheimers would you raise your hands . God bless you. And thank you. Its amazing the impact that the disease has not only on the patient but on the family. And on the loved ones. And it is such a powerful witness that the folks that stopped by my office today spent a lot of time talking about their loved ones, their commitment to making sure that the research and the resources are available for the others who may be impacted by the disease as well. So i thank you for your energy and your enthusiasm. That keeps all of us focused on the topic. My question is for dr. Hodes. Thank you for your expertise and thank you for your contribution here today. As the great opportunity for me to really spend time talking about the success that weve had at home in South Carolina, the medical university of South Carolina. And so many folks representing st. Francis Hospital System that has invested a lot of time to make progress. In particular in charleston has received more than 20 million in grants researching treatments and caring for hundreds of alzheimers patients each and every month. Since 2006 the South Carolina aging Research Network has also been doing some really great work on this issue in conjunction with other hospitals and research universities. There is still so much work to be done. I hear optimism though from researchers in our state who believe with the right resources they can do the most amazing things. The question i have for you doctor is, what does progress look like over the next 10 years from for your perspective . And are we meeting the national alzheimers project act milestones and updating them appropriately so our researchers are working on the critical projects. Can you point to specific achievements in collaboration and discovery since napa that has advanced the science on this issue . Thank you for the comment senator scott. I think there is well justified and enthusiasm as potential for progress. As we have a convergence on more and more insight into basic molecular cellular mechanisms behind alzheimers disease. In terms of the planning that is now in place as an intensified product of the National Plan, we on a regular basis, most recently with a summit held just last month here in bethesda in the Washington Area convened regularly experts to help us update and renew areas of the highest priority and establishing milestones what we need to accomplish year by year to translate and that is the objective of the plan. In terms of accomplishments weve seen in recent years as noted in opening comments and comments for the record. Weve seen progress in the ability to identified early stages of alzheimers in idents of alzheimers disease in individuals long before the appearance of symptoms giving us opportunities that just didnt exist years ago to intervene with new treatments, aimed at newly identified molecular targets and to understand whether they appear to be working or not by tracking bio markers again long before we would identify progression to symptomatic disease. This as an example of the kind of progress we are making. I should add much as were pursuing this kind of research were committed to sustain the quality of life for those affected and their caregivers. The Research Proposals that are coming from your state and across the country are enormously gratifying and exciting, coupled with it i will say from our perspective is the enormous disappointment, in fact, pain and anguish of the great physical of those meritorious applications that we are unable to support. So is we are making progress without question towards an ultimate goal. The pace of had a grog guess is being limited by the amount of research we are support. Thank you, sir. Thank you very much, senator. Senator whitehouse. Thank you very much, madam chair. Let me open with a question and then make a meant. The question will be for, i guess, dr. Hodes and dr. Petersen. Could you i was im on the Budget Committee and we have the budget on the floor so i havent been able to be ear for the whole hearing. Cuba little bit more specific about what you think the prospects are for a cure, how confident you are, how many viable paths towards a cure there are so that a nondoctor like me can get a sense of how much confidence we can have . Thank you, senator whitehouse. An excellent question. Difficult one to answer definitively of course, but i think that there is enough Exciting Research out there right now, perhaps on new targets. This also a complex disease, its not just a single cell disease, but really involves networks in the brain. So there are multiple targets out there and we are somewhat encouraged by a report just last week that one of the drugs thats under investigation for alzheimers disease to remove one of the cull prits, the amyloid plaques in the brain in this early phase one results indicated that, in fact, there may be a path forward with this particular third therapeutic insofar as the plaques were reduced as had he measured hem in patients and the patients improved clinically relative to those that are on placebo. I think its this type of discovery that is going to lead to a hit or more than one hit in the relatively near future. To say how many, when, is very difficult, but im encouraged that were on the precipice of handling this disease one way or another. Dr. Hodes briefly. Certainly remorse inn forcefpore reinforce what he has said. Our integrated approach now with input again from all the brilliance and mind we can converged on the we is to be examples such as those ron mentioned, some of the best candidate for beginning and beginning the most rigorous Clinical Trials while at the same time recognizing its important to maintain early discovery effort in basic science looking for molecular and genetic targets and building those into the next candidates for intervention so that we may have short term successes with some of the current understanding we have, but we couple that with a commitment towards developing deep after nd deeper insights for better approaches for the into you tour. Well, its inspiring to hear that, but im struck by the same fact that my colleague senator warren was struck by and having just worked through the budget at the committee level, having seen the house budget, being on the floor with the republican budgets right now, you know, people can talk a good became but the packet of the matter is that if you like sequester, the house budget cuts below sequester on discretionary nondefense spending by nearly 300 billion. Its going to be devastating if a budget like that goes through and the fact that the House Republicans were willing to support that is a statement that nobody in this room should ignore about the value of the support, not just for the research but also for the support of families who have got it already as ms. Stemley said so eloquently. Ive heard speeches about how critical our kdeficit is and ho we had to address our deficit, we had a hair of republican senators last night on the floor saying how critical it was to invest more in national is security, we hear people about how rhetorical it is to invest more in medical research, but when it actually comes to the budget well over a trillion dollars goes out the back door of the tax code through tax loopholes, through favored rates for people, and guess what, a lot of that stuff got brought in by people who are using their political power to get benefits for themselves. A lot of this stuff is pretty disgraceful on the merits and do you know how many tax loopholes either the Senate Republican budget or the House Republican budget closed to address the deficit . Or closed to address National Security or closed to address medical research . Zero. So the true primary operating principle of both budgets is that every tax loophole is sacred and Everything Else comes second and its very frustrating to is sit here and hear you testify in such good faith and hear such prospects for progress and know how many people this illness effects and be in an environment in which every tax loophole no matter how disgraceful is viewed by some of us as more important than all of those issues. My time has expired. Before i call on the former chairman [ applause ] before i call on the former chairman of this committee, senator nelson, with whom i worked so closely in the last congress, i do feel compelled to respond to the senators comments. You know, alzheimers affects people whether theyre democrats, republicans, independence, greens, males, females, caucasians, asians, africanamericans. It affects all of us and it touches all of us, and the worst thing we can do is to make this a partisan issue. [ applause ] i have led the fight for more funding for alzheimers for years and weve made not nearly enough progress, but we have made some incremental progress and it has never been a partisan issue. So all due respect to my dear friend from rhode island, i would say if we want to achieve what everyone in this room wants us to achieve he, and that is to get a doubling of the funding as soon as possible and then increase the funding to the 2 billion that has been recommended by the council, lets Work Together. Together. [ applause ] and i agree with everything that the chairman has said i just want to say that we do have our colleagues that will Work Together and we are fortunate that one of them is chairman of this committee, but we do have challenges that are represented by and im not pointing out just republicans or just democrats, but there are members of congress that to not see the value in funding Government Agencies that do research and, you know, what well find is there will be some of our colleagues that will work in a bipartisan way and i hope that i think you know that senator mel son is one of those, i am one of those, you are one of those, but what we have dont leave me out. Im one of those. And you are one of those. I want the advocates to work on realizing that its time to hold everyones feet to the fire regardless of their party that the reality needs to match their rhetoric. That you cant engage in the rhetoric of i support Alzheimers Research and then vote to cut funding the nih. That doesnt work. And it wont be my colleague Susan Collins that will be in favor of that, but there will be some and those are the people you need to focus in on no matter what party they are. I think that is the issue that some of thigh colleagues on our side were discussing, that not everyone is as reasonable as the chairman of this committee in terms of working in this a bipartisan way, some just want to dismantle public funding of everything from many of the longterm care programs to, in fact, nih funding. So not you. But others. Senator nelson, its great to have you here today. Well, its great to be back, madam chairman, and thank you for the great partner that you were in leading this committee over the last couple of years. Now, to to those of you in the audience, you applauded to two things, you applauded higher money spending for nih for research and certainly that bar graph right there indicates that more is needed. Over 5 billion for cancer, 3 billion for hiv said, 2 billion for cardiovascular and 596 million for alzheimers. You also applauded bipartisanship. Well, i want to give you an assignment. Now, this committee is bipartisan, thats the way it has been run the last couple of years and the way its being run now by the two leaders. But when money is being cut according to something called the sequester, which is nothing more than a meat cleaver across the board of the entire budget, and that happens to get nih as it did three years ago when dr. Francis collins, the head of nih, had to cancel 700 medical Research Grants to Research Institutions around the country including universities and medical Research Institutions, then thats going to affect the very thing that you are so concerned. So my assignment is that you need to have a prayer session with the members of congress who are voting to cut nih. Now, let me say to mrs. Is stem and mr. Gasby youre doing incredible work to make sure that your family is taken care of and we understand the sacrifice and the unselfishness with which you approached it, and ms. Smith, it takes courage to raise awareness of the disease. So thank you for being here and highlighting that. And dr. Hodes and dr. Petersen, its great to see both of you again. Thank you for coming back to update us and thank you for your continuing work. Dr. Wierman, when you have conversations with your patients, can you broach the subject . Do you tell them what theyre going to have to plan, because here is a report in the Washington Post that says that less than half the people with alzheimers reported that they had been told about their dementia. So what do you do when you advise your patients . I work with folks with dementia at all stages, so what they hear is different at different stages. Early on its about the diagnosis and what treatments are available and where they are at now, addressing current issues. Usually in subsequent visits its about future planning and that involves them and their caregivers or is surrogate decisionmakers, assuring they have a plan in place for what they want to do, whats important to to them, but also krus looking at what their financial situation is and understanding whats realistic for them to plan for in the future. I recommend a lot of consultation with other law attorneys and ask caregivers to be realistic about what they can offer. I think that thats really important, giving caregivers permission not to take it all on their shoulders. Unfortunately, i do have to advise at times that our Hospital System is the ultimate backup. P they get into crisis, despite all of our planning, thats where people have to go in our community and its really unfortunate because its really in the a great place to be when you have ogg testify impairment. Its very much a part of my practice to do that. I think its really challenging for primary care physicians who take care of a broad away of patients to approach that routinely in their practices and we are working with them, hopefully to begin incorporating that. I think whether you have dementia or anything else, youve got to talk with your families, youve got to make sure that youre thinking about the what ifs and its hard for us to do that but we all need to be doing that, whether we have dementia or not. Well, all of you, this is one of the larger you had a audiences for Committee Hearing in the months that weve started this new congress and i would ache your concern, your energy, your activism and we are right on the cusp and the researchers out in nih will tell you this, were right on the cusp of finding a lot of cures for many different kinds of cancers. We know a lot more about cardiovascular. And look at all of the advances in hiv aids. Theyre even talking about taking some medicines, attaching them to the hiv virus as a way to attack some cancers. I mean, it just blows your mind whats going on. So what we need to do now is to focus and get the Research Done to be on the cusp of solving this problem in alzheimers of. Thank you, madam chairman. Thank you very much, senator nelson. I know that senator kaine is on his way, so we will do a couple more questions in the hope that he can get here. And hes here. Boy, what good timing. While hes getting set up im just going to follow up with a quick question for dr. Wierman and that is i was surprised to learn from your testimony that the diagnosis and treatment of patients with dementia is not a routine part of the Clinical Training for post healthcare providers. If you look at the trajectory of alzheimers and other dementias and the number of people in their families who are going to be affected in the near term, we hope we will have a cure, a means of prevention or effective treatments for the longterm, that really that lack of training really surprises me. Is that changing now in your judgment if . And why do you think there isnt more emphasis put on that training . There has been a lot more emphasis in the last few years as far as setting milestones for medical education all the way up through residency training, so i think weve made some headway in the medical community. I think its incredibly variable when individuals go to different programs what they get. Most individuals will get training in older adults, but not specifically in Cognitive Impairment and working with dementia. And what they get probably isnt enough at this time as in my experience this disease each of us has our own individual personality and experiences and you throw a disease that affects your thinking ability on top of that and it looks very different in different individuals and so it takes a lot of experience and a l a lot of training to work with these individuals and their families. You really need to do that. So there needs to be more emphasis and more time on had this. This goes from medical providers, it goes from your front line staff, whether theyre Office Assistants and people answering the phone and scheduling appointment in medical communities and then we need to be working within our our outside the medical community in our larger communities with education and training for identification and weve done a lot in the in the Banking Community about looking for exploitation and that sort of thing and we need to continue that, much like at one time we were range hair dressers to look for and talk with your clients about evidence for physical and emotional abuse, we need to be to go similar things with other people this our community to help us identify individuals who are having issues so that we can work with them. Thank you. Senator kaine. Thank you, madam care woman and thank you for fill bust ring a bit until i got here. This was deeply important to me and i was in an Armed Services hearing. Particularly i want to thank mr. Gasby and ms. Smith, thank you for doing the work that you are doing to really educate and demonstrate the challenges of early onset alzheimers. Its such a difficult thing and obviously in the midst of a difficult hinge to try to help others is really laudable. So i really want to express my appreciation to you for that. This is an issue im dealing with in this my own family and its new and its hard to figure out and the challenge for family members and caregivers and its just its a hard thing. So can i just begin by expressing my gratitude to you for being willing to be courageous and hopefully educate others about this into thank you very much, senator kaine. You know, were here because when weve been fortunate, weve been blessed with some of the great fruits of this great country of ours and when you look around and you start to get involved and give back and you see people struggling and you see single head of households who dont have anyone, any resources and they are dependent totally upon the system and you see how theyre falling through the cracks, you realize that if youre going to stand for something is, its got to be more than just yourself. You know, coming from from brooklyn, were Humble Beginnings and having had a chance to meet one of the greatest human beings i have ever met, my wife, the nicest person, to see what she she taught me how to give and what flan loppy is all about. I know what we have to do and its not about us, its about those folks behind us, those folk who at night when you condition sleep because you know theres a person in another room that is going through holy hell and youve got to get up and go to work or youve got to go and help change them or youve got to go and quiet them down or you just have to be able to just hold them, you understand that if youre going to stand for anything, san for people who need the help the most and the caregivers need it and weve got to make a difference. So im blessed that i have a great partner, but i also am blessed that because of the opportunities weve been afforded to try to give back. So thank you. We dont necessarily choose what ps to us, but we do choose what we do with it and you guys have made a really good choice and all who are here trying to be a beacon of hope in a situation that can seem hopeless for which also reason senator, i learned one thing in life, you play the hand youre dealt but play it to win it. Let me ask to the other witnesses especially those from the Research Community. Talk to me a little bit about early onset alzheimers and what the research is telling you, you know, how is it different or is it not really different, it just occurs earlier in life . Is it the same medical condition as later swron set or is it different in significant ways that we understand, if you could . Thank you, senator kaine, for that question and comment. Early onset disease is really divided into various stages and really is defined by the age of onset, but weve learned in this recent years that its probably the same underlying disease process. Now, having said that, a person who is affected with alzheimers disease, say, in his or her 50s versus somebody in their 80s may have different contributions to the clinical picture. So they look the same, theyre forgetful, they develop problems with thinking and activities of talley living but in the older person there is the amyloid, the plaques and the tangles but also some other pathologies, vascular disease and a variety of other things. In the younger on set person its more likely to be a pure form of the disease, but i think both of them are comparable, treatments that are likely to be effective for young onset will work for old onset and vice versa. There may also be a slight fred election toward a contribution in the younger onset disease as with most diseases. When they occur earlier they end to be more genetically loaded but basically the diseases are quite comparable, late onset and early onset. Any other answers to that question . How about the caregiver side because we have pokes here representing organizations that do a lot of work with caregivers. Im certain that youve already testified a good bit about recommendations you might have for us. Just the shear numbers of caregivers in high state and im sure in all of our states its just kind of staggering. You know, what are the kinds of things we ought to be considering from a policy level to make it to make the care giving task while not be an easy one but lighten the load a little bit . Thank you, senator kaine. So im here on behalf of caregivers but im one of 15 million and there are many caregivers in this this room that have different stories, many of these stories this week ive heard a lot of stories this week and they are all different. We share very similar things, though. We share the same sorrow, we share the same pain, we also share the same hope and we share the same vision that this is going to end in our lifetime and that were going to fight until we see this end. One of the things that we are here and that were collectively coming together as one fist and thats asking youre asking for what do we need now and what we need though at this point is for the open act to be passed and we need it to be pass had had in this congress and we need it because its going to improve care giving, Care Planning services for individuals like myself, for families, for those that are living with dementia, that once they receive that diagnosis they walk out of their doctors offices, one, receiving the diagnosis and hen, two, knowing what the next steps are. That that alzheimers disease diagnosis will be in their medical records and it will follow them and it will go with them wherever their lives mayth to then develop diabetes or anything else, they will know that this doctor will know, hey, this patient has alzheimers. So there is some additional intricate feeds that i need to provide for this individual to give the best possible care that i can. So we need this act to be passed in this congress. We need it now for, you know, my situation is a little different because im five, six years down the road now. Care giving, Care Planning services didnt happen for me exactly the way i probably would have wanted it to, had the hope act been in place for me, but it can help a lot of other people, it can help millions of people and we need that help to make this load easier because its hard and we need help to carry this burden because were carrying it the best that we can, but were just asking for help. Great. Thank you very much and thank you, madam chair. Thank you, senator. Senator till poliis on his way so that means i get to ask another question. My question is for both dr. Peterson and dr. Wierman. Dr. Wierman mentioned earlier that you look at delirium as well and im wondering if there is research that shows that delirium am older people after surgery where a general anesthetic has been involved, which i have seen cases of, can be a trigger. I see dr. Hodes nodding also, so maybe i will start with him. Is there a link . Can that be a trigger of alzheimers . Is there a link between the delirium that you sometimes see in older people after an operation that involves a general anesthetic and dementias . Thank you. Good points and the nodding is because there is in fact good data to a couple of points. The first whether delirium can be seeded or followed by a decrease in cognitive function and a prog greg of dementia, the answer appears to be yes. So also for general anesthesia even if there is not delirium. So often after general anesthetic there can be a short term decline in cognitive function, most people recover fine, the but the failure to recovery relatively quickly is also predictive of longterm decline. Both of these insults, whatever exactly that means to the brain as a result of deep general anesthesia or delirium do seem to be capable of accelerating the functional decline. Dr. Petersen. I agree with dr. Hodes. It also pertains to the issue of what we call cognitive reserve, that is if the brain is injured how much resilience does it have to respond and sometimes with people who are developing a dementia of one kind or another and then undergo general anesthesia they may have a lower threshold for becoming delirious in that context. So it may contribute to the downward decline, but it also may just be a stress test on a system that is starting to gradually fail and consequencely be a that are binger of what cocaine dementia in the future. Difficult to figure out cause and effect there, but its common. Dr. Wireman your response also because i have been discussing this issue for a couple of years with anesthesiologists from maine med where you work and others on whether they should be to go work with the older patients to be careful about what kind of anesthetic they use, only use a general one if its really necessary. Could you illuminate us on this as well . I think it gets out to where y. Were here is we need more research so that we mow what to advise. You know, clinically i certainly see people who seem to be functioning quite well before a surgery and then are not doing so well after and i think as we have more research now where we can identify that there are changes happening before its evident in day to day life, my suspicion is that its those people that we see have the decline after and as it is, its like a stress test that you fail as kind of how i have thought of it as well. I think we just dont know. I think that definitely in an older population doing more assessment prior to major surgeries if its a planned process so hawk at least understand what the risks are going into it so that people can incorporate that into their Decision Making i think is really important, but as is outlined i think we need more research into what anesthesia is best and how it further will had stratify folks so we can do the right thing for them and not put hem down this path that we cant stop. Dr. Petersen and dr. Hodes. If i may, this is a sufficiently important issue that the Alzheimers Association has actually established a professional Interest Group thats looking at this very issue, they meet at the International Conference every summer. Is so this is a hot topic with regard to brain resilience and cognitive function and its role in the development of it dementia. So its a good question. Thats really interesting. I was not aware of that. Dr. Hodes. And i would again an extremely good and important question. Research directed at this actively now includes approaching to using eeg measurements of brain function during anesthesia with an attempt to monitor the level of anesthetic with an eye towards brain activity and anesthesia and to look at the expect of that kind of monitoring on cognitive outcome. Thats one area we may be able to develop quick answers that will make a difference. Interesting. Very cool. Thank you. Senator tillis we are delighted that you made the effort to come back. If im out of breath or seem that im out of breath its because i am. I want to thank the chair and Ranking Member for their leadership. This is a very important issue to me personally because i have been a caregiver. So i just want to let you know that we not only need to focus on the research, but we also need to make sure that we have the right funding, mad damn chair. Excuse me. To make sure that the caregivers are that they have the resources and the education that they need to do the best job for care giving because in my personal experience i was a grandson of a grandmother who got alzheimers at a relatively early age and i wasnt quite sure what i needed to do to help my grandmother, but i was pretty certain that my mother and her two sisters were not doing it the right way and other family peb. So thats why i went back and took some College Courses to actually better prepare me to help my mother and my two aunts who are the primary caregivers to be a better caregiver. So i certainly im not going to ask you questions because i know youve been questioned to death and i will read the record, but i just wanted to communicate first how important it is for Something Like this this another area where i have a lot of passion is around alzheimers or not alzheimers around autism and this is a classic example where i think the head and the heart meet because with the investment of resources we do the right fiscal thing, but we do tremendous transformational impacts for those who are afflicted with alzheimers so we need to invest and we need to invest in the right research, we need to identify some of the most Promising Research some that i read earlier had this week about some other potential promising treatments and make sure we are putting those on the front burner. In a state like North Carolina where over the next ten years im going to see the population of 65 and over go up about 30 , those suffering from alzheimers, in a state thats growing an increasingly large aging population. We immediate to make sure that we educate our members here in the house and senate on the compelling fiscal reasons to do something that produces a transformational outcome. I want to thank you all for being here, i want to thank all the to ex in purple. My daughter would love this because its her favorite color, but i want to thank you all for being here and advocating and i encourage you to reach out and explain the transformation opportunity we have to make this a priority, hugh, madam chair. Thank you very much, senator. Well said. We were talking earlier that when we are send spending 226 billion as a society on a disease thats going to bankrupt our medicare and Medicaid Programs, that if the suffering of families doesnt move you, the economics of it ought to move congress to do the investments that are necessary. And your focus on caregivers is absolutely appropriate, too. I want to thank our Witnesses Today for their extraordinary testimony. Each of you has brought so much to the debate and discussion today and i think youve given us a very comprehensive look at a devastating disease. I want to assure you as the cochair of the alzheimers task force in the senate that i will continue to work with my colleagues, like senator tillis and like senator mccaskill to make sure that we are keeping a focus on the it disease, that were educating our colleagues and that were increasing the funding. We cant do it without your help, as i said, i have a an amendment that im going to ask your help on on the budget to have essentially get the senate on record for increasing the funding level that nih gets for Alzheimers Research and i hope as you do your Office Visits that you will urge your senators to support that amendment. Its either going to come up this afternoon or tomorrow. You may not have time if its this afternoon, but Text Messages work, too. I want to thank all of you for traveling from all over the country to come to washington to tell your personal stories and to help advance the fight against alzheimers. As weve said today, the color purple represents the alzheimers movement. Its my hope that some day soon the color purple will also represent those who survive alzheimers. [ applause ] were going to keep the hearing open, the hearing record open, until friday april 3rd. There may be additional testimony or questions for the record, but again, my sincere thanks to this wonderful panel and to all of the advocates who are here today and everyone who participated in todays hearing, including my staff and senator mccaskills staff, which has worked very hard and also shares a real commitment to the cause. This concludes the hearing. Hugh for being here. [ applause ] record, but again, my sincere [ applause this year marks th anniversary of medicare, medicaid and the Older Americans act as well as the 80th anniversary of social security. In july the white house conference on aging held a forum on the role and support for care fwifrs in the United States and Financial Planning and saving for retirement. The white house has held this kind of conference each decade to address ways to improve the quality of life for Older Americans. Thank you. Good morning, everyone. Good morning. From the smiles that im seeing on your faces here you share the