us at common set c-span.org. send us a tweet. join the conversation. like us on facebook. follow us on twitter. >> a senate hearing concerning alzheimer's disease and then negotiations on iran's nuclear program. and then commissioner margaret hamburg remarking on the agency's accomplishments. >> medical researchers discuss where they are in terms of developing a cure for alzheimer's disease, the effectiveness of current treatment, the need for more funding. the committee heard from former model dee smith who has been

diagnosed with early onset alzheimer's. the hearing is about two hours. senator collins: this hearing will come to order. we have convened this

afternoon's hearing to assess our nation's progress in combating alzheimer's disease since the enactment of the national alzheimer's project act which i co-authored with then-senator evan bayh in 2011. i don't need to tell the people in this room what a devastating disease alzheimer's is. it exacts a tremendous personal and economic toll on the individual, the family, and our society. in addition to the human suffering it causes, alzheimer's costs the united states more than $226 billion a year. including $153 billion in costs to medicare and medicaid.

these costs will skyrocket as the baby boom generation ages. already, our nation's most -- already our nation's most costly disease, alzheimer's is projected to cost more than $1.1 trillion in 2050 if nothing is done to change its current trajectory. alzheimer's is also one of our nation's leading causes of death. the c.d.c. lists alzheimer's as the sixth leading cause of death overall and the fifth leading cause of death for those 65 and older. other estimates put the mortality rate much higher, at number three, right behind cancer and heart disease. moreover, and most frustrating

alzheimer disease is the only one of our nation's deadliest diseases without an effective means of prevention, treatment or a cure. it is now estimated that nearly one in two of the baby boomers reaching age 85 will develop alzheimer's. as the consequence, chances are that the members of my my generation will either be spending our golden years with alzheimer's or caring for someone who has it. in many ways, alzheimer's has become the defining disease of this generation. if we are to prevent alzheimer's from becoming the defining disease of the next generation it is imperative that we dramatically increase our investment in alzheimer's research. just take a look at this chart.

at a time when the united states is spending an astonishing $226 billion a year to care for people with alzheimer's, we are spending less than .3% of that amount. less than $600 million a year on research. and believe it or not, that's an increase that many of us have worked for. you can barely see the expenditure level on that chart. alzheimer's receives funding that is clearly disproportionately low compared to its human and economic toll. look at the second chart. we currently spend $5.4 billion per year for cancer research, $3 billion a year for research on

hiv-aids, and $2 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 treatments. death rates for some diseases are decreasing. yet at the same time, mortality due to alzheimer's is escalating dramatically. surely, we can do more for alzheimer's and other diseases of dementia given their tremendous human and economic price. fortunately, there is promising research that holds hope for alzheimer's patients and their families. the research community is poised to make important advances through clinical trials and

investigating new therapeutic targets. but adequate funding is critical to advance this research. the national plan to address alzheimer's disease has as its primary goal to prevent and effectively treat alzheimer's disease by 2025. to meet that goal, the chairman of the advisory committee on alzheimer's research care and services, dr. ron peterson, whom we will hear from shortly, told our committee last congress that we will need to devote at least $2 billion a year to alzheimer's research. well, at first blush that may seem like a lot of money. but when you compare it to that $226 billion that we're spending caring for people with alzheimer's, it's less than 1%.

and that's the context that we need to put it in. and that's why i've introduced a resolution with several of my colleagues stating that the senate will strive to double the amount of funding that our country spends on alzheimer's in fiscal year 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 also will be offering an amendment to the budget, which i'm pleased to say

is co-sponsored by my ranking member, senator mccaskill, as well as senator warner, senator toomey and senator manchin. we will be calling on the budget for that investment. this is an investment we 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. we need your help, 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. senator mccaskill. senator mccaskill: thank you. i want to thank the chairman for her commitment to this issue. i think it speaks volumes to the people of this room that the chairman has scheduled this hearing so early in her tenure as 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 as an advocate on your behalf, we are in a very good place. i also 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 as far as i'm 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, kim stinley. i'll have an opportunity to introduce her more thoroughly in

a few moments, but she's 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 alzheimer's disease is a normal part of the aging process and treatment options were hopeless or unnecessary. we now know today that that's 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 that this disease poses on our nation's families. we need to do something soon because this is a crisis. the cost for alzheimer's patients is set to reach $1

trillion, over $1 trillion in 2050. think about that $1 trillion. that is not a sustainable cost for individuals, families, or our federal budget. family caregivers are on the unsung heroes of the alzheimer's epidemic. they provide the largest portion of care for individuals with the disease. caregivers typically experience more stress, anxiety and loss of productivity as a result of their increased responsibilities. while family caregivers provide support for their loved ones for as long as they can, many patients in the later stages of the disease require round the clock care and are moved to nursing homes. according to the c.d.c., nearly half of all nursing home residents in the united states have residents with alzheimer's disease. and with a few long-term 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 long-term care services.

much of that for alzheimer's patients. i know that ms. stemley can speak of some of the challenges of accessing medicare and help for her mom. by the way, he mom worked hard all 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 we're talking about these issues this week because this is a week we're voting on the budget. i'm worried for our country and for families like ms. stemley's because the budget we are currently debating does massive cuts to medicaid. nursing home care and other health care services for seniors and disabled would be slashed by $5.4 billion in missouri alone. under the budget we're currently debating. these are middle class families that would be devastated by these cuts. i also want to echo the statements of the chairman about research. government investment in medical research has allowed our nation to be a beacon to the world for

hope. for medical advancement. for being the country that is looked to. and that adds to our national security. because we are seen as such a leader in the world on medical research. funding the national institutes of health has flattened and suffered over the previous years. i am hopeful that the amendment that i am co-sponsoring with the chairman will be a moment of bipartisan agreement that we cannot continue to shirk our responsibility in the united states to advancing medical research there is no area that is more deserving of a -- of additional dollars for medical research than alzheimer's. all that said, those are problems facing families once they have learned of the diagnosis. yesterday the alzheimer's association released their 2015

facts and figures report that found that about half of all people with alzheimer's disease that are care givers are not even aware of their diagnoses. that is incredibly troubling. we can't 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 but many believe the mortality rate for alzheimer's patients is much higher than projected. a study done by researches at rush university medical center found that alzheimer's is likely the third leading cause of death following closely behind cancer and heart disease. we need to tackle the crisis head on and provide families such as yours with as much support as think we can. i look forward to hearing the testimony from our panel of witnesses about how we can confront the looming challenges and plan for reaching treatment by 2025. thank you again for your leadership, chairman collins. i want to thank all of you for being here today. senator collins: thank you senator mccaskill. i should correct myself, senator moran is also a co-sponsor of the amendment that we'll be offering to the budget for those of you from kansas out there.

i just want to make sure i corrected the record. >> madam chair, may i be added as a co-sponsor? senator collins: absolutely. i'm so glad that senator tillis and ores have joined us, i know they care deeply about the issue. we now turn to testimony of the panel. i'm pleased that joining us today on the witness panel are barbara, better known as bea smith, and her husband dan gasby. bea is a well known supermodel and covered fashion magazines. she's also an accomplished restaurateur for those of us who have eaten at her restaurant in union station. retailer, actor and author.

but nowhere are her grace, beauty and courage more evident than in her fight against early onset alzheimer's disease. dan gasby is an entrepreneur television producer, and entertainment executive and has stood by his wife's side every step of the way. by sharing their story, ms. smith and her husband are helping to make a real difference and we thank you. next, we'll hear from dr. richard hodes, the director of the national institute on aging at the national institutes of health. dr. hodes also represents n.i.h. on the h.h.s. secretary's federal advisory council on alzheimer's disease research cure and services.

he also coordinates the n.i.h. research efforts under the national plan to address alzheimer's. we will then hear from dr. ronald peterson, whom i mentioned previously, he is the director of the mayo clinic, alzheimer's disease research center and the mayo clinic study of aging. in 2011, he was appointed to serve as chair of the advisory committee. kimberly stemley has already been introduced by our ranking member. she's from st. louis and will be talking about the challenges that our nation's many care givers of alzheimer's 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 10 years, she has served as the geriatric physician at maine medical center in portland, maine, and she specialized in the challenges that both physicians and care givers face when caring for an alzheimer's patient. again, it's truly touching to see the sea of purple gathered in the hearing room today but it's also a stark reminder of how many individuals and families' lives are affected by alzheimer's 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 bea smith. mrs. smith: thank you all for having us here today.

i haven't been spending a lot of time down here but i'm getting back on the saddle these days. so, it's been a tough time for me because i do have early onset alzheimer's disease and i'm here because i want to make a difference. i'm here because i don't want anybody else to have to go through this. i'm here to ask you to make a difference, not just for the five million americans who have alzheimer's and their care givers, but for the future generations who will face that. this has been -- this has been

something that is very new to me because i've been so healthy for such a long time that i've never had anything like this, but what i'm going to do is i'm going to fight. i'm going to 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 i'm feeling. like this should never have happened to me, that type of feeling. i'm sure there are many people but there are many problems out here also. so, i feel that i'm ready to work. i'm 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. if i have to tell somebody that they shouldn't do something because, i'll do it and they'll tell me i want to do it or i don't want to do it.

but it's important to me, it's 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, i'm excited to be here, i'm happy to be here and i thank you very much. i've got a lot to do in my future and i'm going to do it and i'm going to do it the best way i can and if i can help people and they can help me and we can do it together, that's fine. however we do it, we just have to do it. senator collins: thank you so much. mr. gasby. mr. gasby: thank you, senator collins. i want to thank you for having me, ranking member mikulski.

i love my country. i'm proud to be an american. i'm a kid from brooklyn and i never thought i would have an opportunity to try to make a difference. this is the one time that i know that i can make a difference because i've seen what my wife has gone through. i've 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 a hundred radio and television commercials. who basically always gave back. and now has to wait and -- has to wait for people to help her. i'm reminded of the song that, of all people, jay-z and kanye west wrote and it's -- there's a lyric in there, called "the pain ain't cheap."

and this -- the pain ain't cheap for the five million americans who are suffering with alzheimer's disease. the pain's not cheap for the 15 million care givers 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, i'm broken. and when you see someone that you know, knows that they can't do what their body and mind have told them for 55, 60 years, you realize that you've got to try to step out, step up and make a difference. i'm here to tell you that the pain is not cheap because if we don't do something now the price we're going to pay 10, 15 years down the road -- by 2050 when it's estimated that 15 million

people will have alzheimer's and as you so accurately said the cost will be over $1 trillion. the greatest resource that we have in our country is our intellectual ability. the greatest resource that we have in our country is a two-party system a democracy at work. the greatest resource we have is what we learned from generation to generation that we passed down. when you have alzheimer's, what you have is people lose that perspective. people in their 40's now, 50's. 50's 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 modern day social tsunami, this is what alzheimer's is when you look at it, when you look at what my wife has gone through, when you look at what is ravaging the

african-american community, i'm twice as likely to have alzheimer's as my caucasian counterparts. when you look at the fact that within that community, my community, we're getting tested and treated and found at a later stage so the chances of being able to retard or hand they will situation is going to be more costly than ever, you realize that we've got to stop it right now. now, we've invested millions of dollars, billions of dollars, as you said earlier in heart disease, and cancer, but we pay a pittance to alzheimer's disease. and we know that by using a pet scan we can determine that

there's am lloyd -- that there's amyloid beta plaque in the brain, we can take better care of ourselves, so we can help slow down the progress, so we can develop the means and methods to make a difference. i'm 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 it's 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, testing 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 alzheimer's dinner. and i saw a thousand people plus who all know that the pain from alzheimer's 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? we're at the tipping point and we're going to push this thing over system of -- i come here today to tell you i don't believe in big government. i believe in good government. and i know that what's happening in this committee is going to change the face of the alzheimer's community. last night, i sat at a table with 10 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 wrote the book for "still alice," i was looking at him and all i could think was, here's a 12 or 13-year-old that if i said to him right now what's a cassette deck? he'd go huh? if i said to him, what's an eight-track, he'd go, what? i want that young man, that young boy tyler, to, when his kids are his age, he can look back and say, i remember when we conquered alzheimer's, and the kids are going to say, what? huh? we have it with within our capacity here in this country to make that difference. and i want to be part of it. not just for her but for the future tylers in this country. thank you. senator collins: thank you both for such eloquent testimony.

[applause] senator collins: thank you so much. dr. hodes. dr. hodes: let me begin by thanking you for the opportunity to be here and for the support you, congress and the administration provided to n.i.h. and the research. and for the opportunity to be part of what we're doing. i'd like to spend the next few minutes to give some examples of the state of research in alzheimer's disease. the state which gives us great hope, more than ever before, that what we're seeing now will lead to improvements and the ability to treat and cure alzheimer's disease. if we can move to the next line this probably needs no elaboration. this is referred to by chairman collins, but it's an illustration of where we stand now in terms of the number of people affected by alzheimer's,

5.1 million or 5.2 million and the projected increase, two to three-fold if we don't change course. and to the right in the bar the estimates of cost, already showing alzheimer's disease to be the most expensive illness in this country. it's imperative we succeed in changing this trajectory. next slide. some examples of what were alluded to. dan gasby referred to imaging as an indication of the ways in which we gain insight into what's going on with alzheimer's disease, not possible a few years ago. these are scans that look at amyloid a beta and tau. things that are seen in 1906 that until recently were only identifiable at autopsy. you see the slides here, cognitively normal individuals with relatively little.

the next slide, individuals with alzheimer's. you can see the increase in both plaques and tangles in those brains. but the situation is even more complex and challenging that that. if we look at the next slide here's another individual cognitively normal who has accumulations of amyloid and tau into the brain. and we're gaining insight into these as potential early stages of the disease, before symptoms, potentially before they're irreversible damage done so we can intervene and prevent symptoms. and the next slide, another illustration of progress made. apologize for the difficulty in reading it. it's a time course of genetic discoveries. it shows in the early 1990's, we discovered the genes that were responsible for rare forms of

alzheimer's. and then there were several years didn't discover anything new, but then we got the genes that we understand. remember those genes that cause alzheimer's in families? we're able to identify in these families, including this family shown, a family in south america, identifying years and decades before we know they have the disease. bottom left, a relatively normal scan of individuals in their 20's whether they have the gene or not. to the right, individuals who didn't inherit the gene look relatively normal whereas to the bottom right, those gene carriers who are already showing signs of disease decades before symptoms. and it's in these individuals we're beginning to do prevention studies, before damage and loss of cognitive function occurs with hope that we can make a difference.

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 alzheimer's disease and studies to have treatments and conditions where we can monitor changes and tell early in the course of the studies whether there's success or not in these interventions. next slide. to turn to another important aspect even as we search for cures and early insights into the molecular diagnoses. we recognize the importance of doing all we can for those living with the disease and those who care for them. this is the example of a caregiver study, reach, designed to look at interventions to make life better for people with alzheimer's and those who care for them and the study as any other clinical trial was judged to be a success. it was enormously successful. allowed people to live at home longer. prevented against the increase

risk in disease in care givers. and it's now being done through the v.a. and the administration on aging nationwide in an effort to decrease the burden of those who take on the most important job of caring for those living with alzheimer's disease. next slide. finally, just want to illustrate under the aegis of the national plan which has provided a new and intensified focus, the goal of curing and preventing alzheimer's by 2025 along with equally important goals about care and tracking progress through time. i thank you for the opportunity to give you this brief summary of some of the reasons for real excitement and optimism and look forward to address anything questions you may have. thank you. senator collins: thank you very much. dr. peterson, welcome back. dr. peterson: thank you, chairman. good afternoon, chairman collins, ranking member mccaskill and members of the special committee on aging.

i'd like to thank the committee for the opportunity to discuss the importance of alzheimer's disease and also commend senators collins and klobuchar for introducing the resolution to double the funding for alzheimer's disease research in 2016 and achieve the goal of increasing the annual research budget. in 2010, congress passed and the president signed into law in 2011 the national alzheimer's act, requiring the secretary of health and human services to generate the first plan for this country to address alzheimer's disease. the advisory council completed recommendations for the 2015 plan in january. the primary goal of the plan as dr. hodes just mentioned is to effectively treat and prevent alzheimer's disease by 2025. this goal is but a short 10 years away.

an essential feature of the recommendation submitted to the secretary and the congress includes the recommendation that the federal government spend at least $2 billion a year in research on alzheimer's disease. as chairman collins has indicated, this figure is -- pales in comparison to what we spend on cancer, hiv-aids and cardiovascular disease, yet in those diseases there have been significant progress made with reducing the number of deaths per year. yet the annual death rate for alzheimer's is escalating. again, alzheimer's disease is an incurable disease, and there are no survivors. in 2013, united kingdom prime minister david cameron used the final event of the g8 presidency to host a summit on dementia. in preparation for that, we wrote a column for "the lancet," asking 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 alzheimer's disease. and if we were to spend 1% of that figure on research, 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 number of individuals with alzheimer's are in this country, what they're 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 would be 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 alzheimer's association, it is projected that if a treatment were to be introduced by 2025 that would delay the onset of alzheimer's 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 the payers 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 commend my colleagues at the department of health and human services for their work toward enacting the national alzheimer's plan thus far. great strides have been accomplished in coordinating federal agencies and improving federal capabilities with respect to alzheimer's 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 institutes on aging, he and his staff have established milestones for the execution of the plan and now with the passage of the alzheimer's

accountability act, our work -- 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's a more convenient time to increase funding for this disease. projections indicate that alzheimer's disease will bankrupt the health care system as we know it today. we simply cannot afford to spend the aforementioned over $1 trillion a year as projected in 2050 to care for individuals with alzheimer's disease. the impact on individuals and families is enormous. the cost to society is unsustainable. we appreciate the difficult constraints under which the federal government is currently operating. but our patients and families cannot wait. with 10,000 baby boomers turning

65 on a daily basis, 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 are encouraged that something is in the pipeline. ultimately, it will be up to the individuals such as those on this committee to make very difficult decisions regarding funding for alzheimer's disease and related disorders going forward. we call upon congress to make bold decisions to alter the cost of this disease now so that it is not a burden to the next generation and providing them with an intractable situation. the national plan to address alzheimer's disease has established a blueprint to make this possible and we need your support. i appreciate the opportunity to address the committee. thank you. senator collins: thank you doctor. ms. stemley.

ms. stemley: good afternoon. on behalf of the 15.7 million care givers for individuals living with alzheimer's disease and other dementia, thank you for the opportunity to testify before you today. alzheimer's is a progressive and ultimately fatal disease. the men and women living with alzheimer's are your friends your neighbors, some may even be your family members. they are business leaders, school teachers, store clerks and construction workers. they are both republicans and democrats. and my beloved mother, dorothy stemley, is one of them. i am honored here today to share our story.

and discuss issues facing people with alzheimer's and their care givers. 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 the skilled nursing facility in missouri. and i'm confident that she is receiving appropriate care and she's 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 rationalizing unusual incidents and she did an even better job hiding others. with all the rationalizing and

denial came to an abrupt halt when i received a phone call from a stranger telling me my mother was in the middle of martin luther king drive in in st. louis. alone and confused she slept all night in her car on the side of the street. my mother was a long way from home and that day marked the beginning of our journey with alzheimer's. my mother's diagnosis was the result of three different evaluations. neurologists perform a number of blood and cognitive tests on her, ultimately concluding that it was in fact alzheimer's disease. so there i was, an only child, caring for my single mother, who had alzheimer's. i knew then that 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 alzheimer's disease, and i felt completely lost.

after her diagnosis, we didn't receive much information from her doctors about the disease or much advice on what to do next. a friend of mine recommended looking online for help. i found the alzheimer's association, which was the first time light began to shine through the darkness. i was able to learn about the disease, what the diagnosis meant for myself and my mother as well as what our next steps should be in 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 in 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 day one every single time. at the time she was diagnosed, my mother was living alone. she exhibited other warning signs that raised concerns about her safety. for example, she 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 long-term care exhausted her funds. we needed the medicaid program to afford the long-term care and i am very grateful for the assistance. based on my experience, i know i'm not the only one who has had difficulty getting help after learning about an alzheimer's diagnosis. i have experienced firsthand 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 care givers after an alzheimer's diagnosis. it took a friend's advice, not my mother's health care provider, and finding the alzheimer's association for us

to even get basic information about what to expect next. no one could ever feel as lost or no one should ever feel as lost as i felt back then there is no treatment for alzheimer's disease, however, there are many things that can be done to improve a family's ability to cope with the disease, especially immediately following a diagnosis. this is why the hope for alzheimer's act, which was reintroduced this week, is critically needed. the hope act would ensure that families like mine who are facing an alzheimer's diagnosis are provided with care planning services to help guide them through their next step. to some extent, i feel blessed. i eventually found the resources and support i needed to manage my mother's condition and my own well being. if hope had been around at the time of my mother's diagnosis, i'm certain that i would have felt much less alone in this fight in 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 alzheimer's act would provide. i've also had the opportunity to speak with many researchers about the current progress that has been made toward the development of a cure for alzheimer's. i'm disheartened because i realize that despite progress, we still have a very long road to walk. seeing advancements in other areas as the result of strong federal investment and research makes me think of the opportunity that exists for scientists to develop a truly groundbreaking treatment for this disease. one that could spare millions of families the same heartache i feel every time i see my mother. i always say that alzheimer's disease is one of the worst out there.

i implore you and all of your congressional colleagues to work to provide additional funding for alzheimer's research. research is the only way we can truly create a world without alzheimer's. 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 alzheimer's disease. if there's one thing i would ask that you would take away from my testimony, it would be that alzheimer's disease not only impacts a diagnosed person but those that love them very dearly. thank you so much. senator collins: thank you very much for giving us your perspective. [applause] senator collins: dr. wierman. dr. wierman: good afternoon, chairman collins, ranking member

mccaskill and the distinguished members of the special committee on aging. i'm pleased to be here to give you my thoughts on working with people with dementia and their care givers. i'm a geriatrician in maine and clinically my work is focused on dementia. i evaluate individuals and work with their families at our outpatient geriatric center and i work with the hospital working to prevent complications for older adults that are hospitalized as the medical director for the hospital i work to prevent delirium. it changes the trajectory of their dementia in a negative fashion. dementia really is a looming crisis for our state and the nation.

maine has the oldest median age, nearly six years older than the average median age in the united states, which means we have fewer working age individuals to help care for our older adults and particularly those with dementia as their disease progresses. projections for maine are that the 65 and older population is the only population that's 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's 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 structure if we do not act now to do something. it stresses our state in many ways including increased burden on care givers, both paid and unpaid.

lack of state housing. needs for transportation in our rural state. and a health care 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 care givers to help. within our health system at maine health we are experiencing significant challenges already finding suitable living environments for hospitalized patients with dementia when they can no longer be cared for at home. this results in patients remaining at the wrong level of care in an acute care hospital when what they need is an environment designed 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 and many care settings. it's critical that our primary care system become prepared to deal with cognitive assessment and care planning to provide resources that individuals and their families need to deal with this progressive disease. currently dementia is a chronic, terminal illness and we need to prepare our health care system and communities to provide planning and support to patients once diagnosed, even as we search for that cure. i would like to take a moment to share a couple of stories. i have utilized student m's for these stories. i first met mr. and mrs. keller about 10 years ago when i diagnosed mr. keller with mild cognitive impairment. sadly, his disease progressed to alzheimer's, 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 frequent pneumonia. i began visiting him in the home as it as it was impossible for him to make it into the office. he had support by his wife, paid caregivers and eventually other family. eventually we involved hospice and he was able to die in his own apartment with the support of his wife and family. during that time 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 husband's disease progressed and required care for her own. i did not see her for a year. she then appeared in my schedule as a patient. she developed memory loss. her children were away. they were around in the summer and really couldn't provide support. mrs. keller continued to live

fairly independently and needed to transfer an assisted level of environment. her transition did not go well. she fell, she had a head injury, she developed delerium and has continued to decline today. she and her husband tried to plan financially for all 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 i am 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 individuals with dementia now to support alternative housing options and creative community supports for individuals with dementia. ultimately, of the utmost importance is increase in funding to identify ways for prevention and cure of this devastating disease. thank you. senator collins: thank you very much for your testimony. mr. gasby, when we were talking informally before this hearing you talked about a 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. gasby: yeah.

it goes to get people to participate and giving information so they can be considered for drug trials. one of the main impediments to getting more funding, more research, more drugs online is that we don't have enough people to participate so that they can be considered for these drug trials and particularly in minority communities that there's been a -- with the tuskegee experiment, with things that happened in the past, myths and some reality african-americans and people who are not caucasian are not participating. what most people don't 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 people from different backgrounds.

you need women, you need men you need asians, you need latinos, you need african-americans.this ingrained health registry registers peoples of they can be considered for these drug trials. we want to do breakdown that stigma that it is ok that government does do good things and gone to trial will not be the teske gi experiment all over again. there are so many myths and so many taboos that are existing. we want to let people know we have to do this, not just for ourselves but for the future to find the right medicine. senator collins: thank you for doing that. gasby: one of the great things about that is it increases the

overall participation by 6% within the minority community. a lot of people didn't realize they needed this diversity in the gene pool. senator collins: that is terrific since african-americans are more likely to get all -- alzheimer's. i think you being out there has helped to increase awareness. i thank you for that. dr., i started visiting research centers and i talked to dr. peterson at length about the wonderful work at mayo. i spent an hour and a half at the massachusetts general talking to the alzheimer's researchers there. i must say and i want to share that i see great promise and hope on the horizon.

one of your chart talked about the imaging that was possible that wasn't a few years ago the -- ago. alzheimer's could only buy diagnosed -- be diagnosed through a brain autopsy. now, we can do imaging that shows the beta amyloid plaques . i learned that there is actually an antibody that can be given when the beta-amyloid is developed. i don't know how effective or at what stage that is that but there was so much exciting research going on just at mass general. i cannot wait to go to the university of pennsylvania and other research centers. i am sure there is one in missouri as well. the problem is with only $600

million, you cannot possibly fund all of those exciting 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 the case that the weld of excitement opportunities to gifted and committed scientists are proposing research that is bar in nexus of our ability to fund it now. just by looking at the success rate we have so that of the applications that have come in in the areas of all summers 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-reviewed experts in the field as absolutely outstanding. even at that level in terms of the research we already have proposed, there is for more that could and should be funded. the on that, with sufficient resources, the ability to recruit and initiate new areas not in the minds of investigators as a dividend we look forward to. senator collins: if researchers saw a bigger pot of money available that do 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. >> i want to thank all of you. let me ask it is through this disease disproportionately

affects women, correct? more african-americans than caucasians? let's talk a little bit about the reality of medicaid in this occasion -- equation. one is investing in the research . the other is making sure the care can be given. mrs. stanley, we live in a state where they have refused to expand medicaid, refuse to draw down the federal dollars available for health care in our state. the budget we are currently debating cuts medicaid by another $400 billion. i am not sure people realize the percentage of nursing home patients that are suffering from alzheimer's and need help from medicaid. what would you have done? i think there are stereotypes

around medicaid that are terribly unfair to people like her mother. your mother worked 33 years. she had a pension and a plan and then she got alzheimer's. you found yourself having to access medicaid services for long-term care. what would you have done if they were not available? if there was a block oriented in the money was gone because it was october what would you have had to do? ms. stemley: senator, i don't know. i was not familiar with the medicaid process until we were thrown into this world. there have been many nights

understanding the cost of long-term care in those realities because now you face the financial fight package to have an extraordinary price tag then the emotional and physical site to go through. and initially just understanding that cost, there were many nights i was very scared because she does have a good pension but we don't have the resources to pay $5,000 plus $8,000 a month to have a long-term care facility. i didn't know what we would do if we were going to be denied i did not know. do i make too much? do i make too little? will i be denied? it was not an option for us to be denied. i had to have the care. the very disheartening part for

me is my mother is a very proud women and she did work for 33 years and for the federal government and is very proud of it and sometimes today, her mind, she still thinks she has to go to work for the government. but all those years of work were exhausted by a disease and not transported forward through an inheritance. her grandchildren don't get to see it. there are not things she is leaving behind for her family but this disease is exhausting everything. it is hard raking. i don't know what we would do but that alone has been my fear many nights. that is why i said i think god for medicare -- i thank god for

medicaid. at the same time we have never , needed for anything. as a middle-class family i have never been in the position to have the need but i am grateful for that. senator collins: i hope you into the advocates carry that message because i think that the stereotype is harming the medicaid program. it is damaging to think the only people that have medicaid are the people who don't work hard or the people who aren't trying. nothing could be further from the truth, particularly when it relates to long-term care in this country. it seems to me not sending research is dumb because it will cost us a lot of money and refusing to fund care is cruel. i hope you all will continue to advocate in every office in the capital on those issues. thank you. senator collins: senator warren.

senator waren: thank you, senator. i wanted to be here. all summers forces families to watch helplessly as their loved ones slip away. the high cost of care also frequently stretches families to the breaking point according to the alzheimer's association, we spent $226 billion caring for people with alzheimer's this year and by the year 2050, the yearly cost will be more than 1.1 trillion dollars. the director of the national institute of mental health justified during the last congress, he noticed 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

out 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 are nearly 25%. last year, nih spent only $562 million on alzheimer's disease research. that is about 2/10 of 1% of what the disease cost us last year. dr., can you tell us briefly how the reduction and support for nih funding affected the ability of you and your colleagues to advance research? dr. hodes: it is the case the progress is nothing limited by great ideas but our ability to support it.

and earlier comment i noted that even if one looks at the number about any applications currently being proposed by scientists, it is a conservative estimate that we can fund twice as much as we do now simply with the ideas being proposed and move forward at a greater speed. that is only the first iteration. with more resources, we'll be able to recruit new investigators, establish new infrastructure. senator warren: you say we are funding half or fewer of the potential research that might give us a cure for all timers. thank you. dr., could you add to that? dr. peterson: another ramification of that is that with the reduction in federal funding, there is also a reduction of number of new investigators going into the

field. that will cripple us down the road. if young investigators see the old guys like myself struggling for funding and a research setting, they say, how am i going to survive? i am afraid we are turning off the young generation of investigators that are going to be the ones who lead us forth in the future. i see that as a concern. senator warren: the high cost is long-term. every member of congress i have spoken with said they support and i age and more medical research. medical research -- support nih and medical research. but medical research takes more money and congress has not done anything to get more money into the agency. the budgets were released last weekend both say they support medical research funding. 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 will see cuts not increases under these plans. earlier this year, i introduced the medical innovation act, a bill that would boost nih funding by about $6 billion a year. that is not enough. but, it is a start. 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. talk is cheap. we have an opportunity to make a real difference in the fight against alzheimer's, an opportunity to save billions of dollars in unnecessary health and long-term care spending and to give a families their loved ones for more precious time.

we will miss that opportunity, unless congress steps up to fund the nih. [applause] senator collins: thank you madam chairman. senator scott. welcome. senator scott: thank you chairwoman. thank you for your investment of your time and your energy on such an incredibly important topic. all of our offices have been filled enthusiasm and relied stores. i cannot think of anyone here on the panel who has not been impacted personally by alzheimer's or parkinson's and watching the challenge of your loved ones. my grandmother passed away in

2001 and to see the challenges she faced. but also those who are a support system. if you are blessed with the opportunity to care for someone with all's imus, please raise your hand. god bless you. and thank you. it is amazing the impact the disease has on the family and loved ones. it is such a powerful witness that people talk about loved ones and their commitment to making sure the research and resources are available for others who may be impacted by the disease as well. i thank you for your energy and enthusiasm. it keeps all of us focused. my question is for dr. hodes. thank you for your expertise and

for a contribution. it is a great opportunity for me to talk about the success in south carolina with the hospital system that has invested a lot of time looking for those resources to make progress. enter alston, they have received more than $20 million in grants in caring for hundreds of all timers patients each and every month. since 2006, the network has been doing great work on this issue in conjunction with other hospitals. there is still so much work to be done. i your optimism from those in our research state that they can do the most amazing things. the question i have for you is what does progress look like over the next 10 years from her perspective and are remitting

the national all-time is project milestones and updating them appropriately so that our researchers are working on the most critical projects? can you point to specific achievements in collaboration and discovery since napa that has advanced the science on this issue? dr. hodes: thank you for your comments. there is well justified about the potential for progress as they have more insight into cellular mechanisms behind the disease. in terms of the planning that is now in place, it is an intensified product of the national plan. we on a regular basis, most result with a summit held last month, can be regularly come experts to help us update and renew the areas of highest priority and to establish milestones. what we need to accomplish year-by-year in order to translate those priorities.

in terms of some of the condiments we have seen in recent years as noted in some of my opening comments and for the record, you have seen progress the ability to identify early stages of all timers disease and individuals long before the appearance of symptoms, giving us the opportunities that did not exist years ago, to intervene with new treatments, and that newly targets and to understand whether they appear to be working or not by tracking biomarkers long before we would identify progression. this is an example of the progress we're making. i should add we are also committed to important work of the sinning the quality of life for those affected and their caregivers. the reserve proposals coming from your state and across the country are gratifying. a couple from ours perspective is the -- coupled with it is the

disappointment of the great number of those applications that were unable to support. we're making progress. the pace of the progress is limited by the amount of research we can support. senator collins: thank you. senator whitehouse. senator whitehouse: thank you madam chair. the question will be for dr. hodes and dr. peterson. i am of the budget committee. we have the budget on the floor so i have not been able to be here for the entire hearing. can you be more specific about what you think the prospects are for a cure? how confident you are, how many viable packs toward -- paths toward a cure they are so anon doctor like me can get a sense of how much confidence we can have? dr. peterson: an excellent

question. a difficult one to answer definitively but i think that there is enough exciting research out there now that perhaps on new targets. this is a complex disease, not a single cell disease. it really involves networks in the brain so there are multiple targets and we are somewhat encouraged by a report just last week that one of the drugs under investigation for all timers disease to remove one of the culprits, the plaques in the brain indicated that in fact there may be a path forward with this particular therapeutic. the plax were reduced. the patients improved clinically relative to those who were on to see both. very early phase one study. they're moving forward with phase three. i think it is 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 is difficult. i'm encouraged that we are on the precipice of a really handling this disease one way or another. dr. hodes: we don't know yet in this complex disease exactly what will be the optimal targets or the combination of targets so that our integrated approach now with input from all of the brilliant minds we can converge on is to be taking examples such as those who mention some of the best candidates for treatments not the beginning, the most rigorous clinical trials while recognizing it is important to maintain early discovery efforts and basic science, looking for molecular science targets and building those into the next candidates for intervention so that we may have short-term successes but some of the current understanding we have but we couple that with a commitment or developing insights for better approaches to the future.

>> i am struck by the same fact that my colleague senator warren was struck i -- 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, people can talk a good game but the fact of the matter is if you like sequester, the house budget cuts below sequester. this is on discretionary nondefense spending. by nearly $300 billion. it is 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. it is about the value of the support, not just for the research but also for the support of families who haven't already.

i have heard speeches about how critical our deficit is. and how we have to address our deficit. we had a pair republican senators last night on the floor saying how critical it was to invest more in national security. we are people talking about are critical it is to invest more in medical research. when it actually comes to the budget well over $1 trillion goes out the back door of the stacks -- tax code through tax loopholes, through favored rates for people, and 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. do you know how many tax loopholes either the senate republican budget or the house republicans 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. it is very frustrating to sit here and here you testify in such good faith and hear such prospects for progress and know how many people this illness affects and be in an environment in which every tax loophole to matter how disgraceful issued by some of us as more important than all of those issues. my time is expired. [applause] chair: before i called a former chairman senator nelson with whom i work so closely in the last congress, i do feel compelled to respond to the senators comments.

alzheimer's affects people whether they are democrat, republican independent green male, female caucasian, asia and come african-american -- asia and come african-american. the worst thing we can do is to make this a partisan issue. [applause] senator collins: i have led the fight for more funding for alzheimer's four years. we have made not nearly enough progress but we have made some incremental progress and it has never been a partisan issue. so, with all due respect to my dear friend from rhode island i

would say if we want to achieve what everyone in this room wants to achieve, and that is to get a doubling of the funding as soon as possible and increase the funding to the $2 billion that has been recommended by the council, let's work together. together. [applause] senator warren: i agree. i wanted to say that we do have our colleagues that will work together. we're fortunate that one of them is chairman of this committee. we do have challenges that are represented. there are members of congress who do not see the value in funding government agencies that do research.

what we find is there will be some of our colleagues that will work in a bipartisan way and i hope that you know senator nelson is one of those. but what we have to work out and i want the advocates to work on realizing it is time to hold everyone's feet to the fire that the reality needs to match the rhetoric. you cannot engage in the rhetoric of i support alzheimer's research and then vote to cut funding. that does not work. it won't be my colleague susan collins that will be in favor of that but there will be some. those are the people you need to focus on no matter what party they are and i think that is the issue that some of my colleagues on our side were discussing that not everyone is as reasonable as the chairman of this committee in terms of working in a

bipartisan way. some just want to dismantle public family funding. gosh public -- public funding. senator collins: senator nelson, it is great to have you here today. senator nelson: it is great to be are today. iggy for the great partner you were in leading this committee over the last couple of years. to those of you in the audience, you applauded to two things. you applauded higher spending for nih for research and certainly that graph there indicates that more is needed. over 5 billion for cancer, three billion for hiv its, 2 billion for cardiovascular and 586

million four alzheimer's. you also applauded bipartisanship. well, i want to give you an assignment. [laughter] this committee is bipartisan. that is the way it has been run the last couple of years and the way it is run now. but, when money is being cut according to something called a sequester, which is nothing more than a meat cleaver across the board of the entire budget, and that happens to get nih as a dead 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. that is 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 ms. stembley and mr. gasby, you are doing tremendous work and we understand the sacrifice and the unselfishness with which you approach it. miss smith, it takes courage to raise awareness of the disease

so thank you for being here and highlighting that. dr. hodes and dr. peterson, it is great to see both of you again. thank you for coming back to update us and thank you for your continuing work. dr. we are meant -- weirman when you have conversations with your patients, can you broach the subject? do you tell them what they will have to plan? here is a report in the washington post that says that less than half the people with alzheimer's reported that they had been told about their dementia. so, what do you do when you advise your patients? >> i work with people with

dementia at all ages. it is about the diagnosis and what treatments are available. and where they're at now, addressing current issues. usually in subsequent visits, it is about future planning and that involves them and their caregivers or surrogate decision-makers assuring they have a plan in place for what they want to do, what is important to them but it also includes looking at what their financial situation is in understanding what israel was take for them to plan for in the future. i recommend a lot of constitution -- consultation with law attorneys. and ask caregivers to be relisted about what they can offer. i think that is really important , giving caregivers permission not to take it on their shoulders. unfortunately, i do have to advise at times that our hospital system is ultimate --

the ultimate backup. if they get into crisis, that is where people have to go in our community. it is unfortunate because it is not a great place to be when you have cognitive impairment. i think is challenging for primary character positions -- care physicians to put that into their practices and we are working with them to begin incorporating that. whether you have dementia or anything else, you have to talk with your families, make sure you are thinking about the what if's. we all need to be doing that whether we have dementia or not. senator nelson: this is one of the larger audiences for a committee hearing in the months we have started this new congress and i would take your

concern energy, activism and we are right on the cusp and the researchers out in nih will tell you this -- we are 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. they are even talking about taking some medicines, attaching them to the hiv virus as a way to attack some cancers. it blows your mind what is going on. what we need to do now is to focus and get the research done

to be on the cusp of solving this problem in alzheimer's. thank you, madam chairman. senator collins: thank you senator nelson. i know that senator kaine is on his way. we will do a couple more questions in hopes he can get here. boy, what good timing. while he is getting set up, i will follow up with a quick question for dr. why are men -- weirmen. i was surprised to learn the diagnosis and treatment of patients with dementia is not a routine part of the clinical training for most health care providers. if you look at the trajectory of alzheimer's and other dementia and the number of people in their families who are going to be affected in the near term, we

hope we'll have it a cure -- that lack of training really surprises me. is that changing now in your judgment and why do you think there isn't more emphasis put on it? dr. wierman: there have been a lot of milestones for medical education. we have made some headway in the medical community and it is incredibly variable when individuals go to different programs. most individuals will get training an older adults but not specifically in cognitive impairment and working with dementia. in my experience, each of us has

our own individual personality and experiences. either a disease that affects your thinking ability on top of that and it looks very different in different individuals. it takes a lot of experience and training to work with these individuals and their families. we really need to do that. there needs to be more emphasis and more time on this and this goes from medical providers your frontline staff, whether they are office assistance and a people answering the phone scheduling appointments and medical communities and that we need to be working with them -- within -- outside the medical community in our larger communities with education and training. we have done a lot in the banking community about looking for exploitation and that sort of thing. we need to continue that. at one time, we were training hairdressers to look for and talk with their clients about evidence for physical and emotional abuse. we need to be doing similar

things with other people in our community to help identify individuals who are having issues so we can work with them. senator kaine: thank you. i want to thank mrs. smith and mr. gasby. thank you for doing the work you're doing to educate and demonstrate the challenges of early onset alzheimer's. it is such a difficult thing and obviously, in the midst of a difficult thing to try and help others is really laudable. i want to appreciate -- express my appreciation to you as it is an issue i'm dealing with in my own family and it is new evidence are designed

throughout. can i begin by expressing my gratitude to you for being willing to be courageous and hopefully educate others about this. mr. gasby: thank you, senator. we are your because we have been blessed with some of the great fruits of this great country of ours and when you look around to get involved and get back and you see people struggling and easy single head of households who don't have anyone, any resources and their dependents totally upon the system. you see how they have a following through the cracks. you realize that if you're going to stand for something, it has to be more than just yourself. coming from brooklyn humble beginnings, and having had a chance to meet one of the greatest human beings i've ever met, my wife, she taught me how

to give and what philanthropy was all about. i know what we have to do and it is not about us, it is about those folks behind us, those folks who asked not, when you can't sleep, because you know that the person in the other room is going through holy hell. you have to get up and go to work or go and help change them or go quiet them down or you just have to be able to hold them. you understand that if you're going to stand for anything, stand for people who need the help the most. the caregivers needed and we have to make a difference. i am blessed that i have a great partner but i am also blessed that because of the opportunities we had been afforded to give back. thank you. senator kaine: you guys have really made a good choice. all who are here trying to be a beacon of hope for which there

is reason. mr. gasby: you play the hand you're dealt with, you play it to win. senator kaine: talk to me a little about early onset all time or's and from what the research is telling you, how is it different or is it not really different, it just occurs earlier in life? is it the same medical edition as later onset? is it different in significant ways we could understand? dr. peterson: early onset is divided into various stages. it is defined by the age of onset. we have learned it is probably the same underlying disease process. a person who is affected with

all timers disease and his or her 50's versus somebody in their 80's may have different contributions to the clinical picture. they look forgetful develop problems with daily living but in the older person, there is the other pathologies. in the younger onset person, it is more likely to be a pure form of the disease with the protein. 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 predilection for a more genetic onset. a 10 to be more genetically loaded then later in life -- they tended to be more genetically loaded then later in life.

senator kaine: how about the caregiver said? we have people here representing organizations that do a lot of work with caregivers. i'm certain you have testified a bit about recommendations you may have for us. the sheer numbers of caregivers in my state and all of ours, it is staggering. what are the kinds of things we should be considering from a policy level to make the caregiving task a little bit -- lighten the load a little bit. ms. stemley: i am here on behalf of of caregivers. there are many caregivers in this room that had different stories, many of these i have heard. i have read a lot of stories this week. they are all different. we share similar things. we share the same sorrow pain.

we share the same hope and we share the same vision visible and in our lifetime and that we will fight until we see this and. one of the things we are here and collectively coming together and that is asking what we need now and what we need now is for the hope act to be passed. we needed to be passed in this congress and we need it because it is going to improve care planning services for individuals like myself, for families, for those living with dementia. once they receive the diagnosis, they walked out of the doctor's offices receiving the diagnosis and knowing what the next steps are. that alzheimer's disease diagnosis will be other medical records and it will follow them and go with them wherever their

lives may take them whether they begin to develop diabetes or anything else. they will know that this dr. will know this patient has alzheimer's. there is additional need i need to provide for this individual to get the best possible care i can. we need this act to be passed in this congress. we need it now for -- my situation is a little different. i am six years down the road now. care planning services did not happen for me the way i wanted it to. it can help a lot of other people. it can help millions of people and we need that to make this load easier because it is hard and we need help to carry this burden because we are carrying at the best we can. we can. we're just asking for help. [applause] senator kaine: thank you very

much. senator collins: senator tales is on his way back so that means i get to ask another question. [laughter] senator collins: my question is for both dr. peterson and dr. wierman. you mentioned earlier you look at delirium as well. i am wondering if there is research that shows that delirium in older people after surgery were a general anesthetic has been involved, which i have seen cases of can be a trigger. i seen that see dr. hodes nodding also. can that be a trigger of alzheimer's? is there a link between the

delirium you sometimes see in older people after an operation that involves the general anesthetic and dementia? dr. rhodes: there is good data to a couple of points. the first to whether delirium can be followed by decreasing cognitive function and a progression of dementia, the answer appears to be yes. for general anesthesia, even if there is not delirium. for the general anesthetic, there can be a short-term decline in cognitive function. b failure to recover quickly is also predictive of long-term decline. both of these as a result to deep general anesthesia or delirium do seem to be capable of accelerating the functional decline. senator collins: dr. peterson.

dr. peterson: it also pertains to the issue of cognitive reserve. that is in the brain is injured, how much resilience it has to respond and sometimes with people who are developing dementia and then undergo general anesthesia. they may have a lower threshold for becoming delirious in that context. 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 consequently be a harbinger of what could be dementia. it is difficult to figure out the cause and effect. it is common. senator collins: dr. wierman your response also. i have been discussing this for several years where you work on whether we should be doing more with older patients to be careful about what kind of

anesthetic they use. could you illuminate us on this as well? dr. wierman: it gets at to why we are here as we need more research so we know what to advise. 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 it is evident in day-to-day life. my suspicion is it is those people we see decline after and it is a stress test you failed. it is kind of how i have thought of it. i think we just don't know. i think that definitely in an older population doing more assessment prior to major surgery if it is a planned process so you can understand what the risk is going into it

so that people can incorporate that into their decision-making. i think that is really important that as is outlined, we need more research into what anastasia is best and how we can stratify people so we can do the right thing for them and not put them on this path we cannot stop. dr. peterson: the alzheimer association has established a professional interest group looking at this issue. they meet at the international conference every summer. this is a hot topic with regard to bring resilience and cognitive function and its role in the development of dementia. it is a good question. senator collins: that is interesting. i was not aware. dr. hodes: an extremely important question. research directed at this now includes approaches to using measurements of brain function

during anesthesia with an attempt to monitor the level of anesthetic with an eye toward brain activity and to look at the effect of that monitoring on cognitive outcomes. that is one area we may able -- be able to develop some quick answers that may make a difference. senator collins: thank you. senator, we are delighted you made the effort to come back. senator till: this is a very important issue to me personally . i have been a caregiver. i want to let you know that we not only need to focus on the research, but we also need to make sure we have the right funding. to make sure the caregivers are -- they have the resources and

education that they need to do the best job for caregiving. my personal experience, i was a grandson of a grandmother who got all summer at a relatively early age i was not 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. that is why i went back and took some college courses to better prepare me to help my mother and my two aunts. i certainly -- i will not ask you questions because i know you have in question -- bancwest into debt. i wanted to communicate how important it is for something like this -- another area i have a lot of passion is around autism. 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 impact for those inflicted with alzheimer's. we need to invest and the right research, identify some of the most promising research, some i read earlier this week about some other potential promising treatments to make sure we're putting those on the front burner. and north carolina were over the next 10 years i should be population of 65 and over go up about 30%. in a state growing increasingly large and an aging population. we need to make sure we educate our members and the house and senate on the compelling fiscal reasons to do something that produces a transformational outcome. i want to thank you for being here. my daughter would love this because purple is her favorite color. i want to thank you for being here and advocating and i encourage you to reach out and explain the transmission

opportunity we have to make this a priority. they could, adam chair -- thank you, madam chair. senator collins: when we are spending to let a $26 billion on a disease that will bankrupt our medicare and medicaid programs that if the suffering of families does not move you, the economics of it ought to move congress to do the investments necessary. your focus on caregivers is absolutely appropriate. i want to thank our witnesses today for their extraordinary testimony. each of you has brought so much to the debate and discussion today. i think you have given us a very comprehensive look at a devastating disease. i want to show you as the culture of the alzheimer's task

force in the senate that i will continue to work with my colleagues to make sure that we are keeping a focus on the disease, that we are educating our colleagues, and that we are increasing the funding. we cannot do it without your help will stop -- help. i have an amendment i will ask your help on on the budget do have essentially get the senate on record for increasing the funding level that nih gets for alzheimer's research and i hope as you do your office visit that you will urge your senators to support that amendment. it will come up this afternoon or tomorrow. you may not have time 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 alzheimer's. as we have said today, the color purple represents his alzheimer's movement -- the all summer's movement. it is my hope someday soon the color purple also represent those who survived alzheimer's. [applause] senator collins: we are going to keep the hearing open until friday, april 3. there may be additional testimony are 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 today's hearing, including my staff and senator

mccaskill's staff who has worked very hard and shares a real commitment to the cause. this concludes the hearing. thank you for being here. [applause] [captions copyright national cable satellite corp. 2015] [captioning performed by national captioning institute] [captions copyright national cable satellite corp. 2014]

are >> you >> a next washington journal -- melanie campbell.

and then michael rubin on conflicts in the middle east. also matthew gardner. >> senator harry reid has announced that he will not run for reelection in 2016. he says that he does not want to soak up campaign resources when he can focus on putting democrats back in power. he has two more years in his current term. an accident left senator reid struggling to regain sight in his left eye. he says that that has given him time to think. here is his statement. senator reid: these bruises i have on my face are an inconvenienc