senator collins: this hearing will come to order. good afternoon it is my pleasure to convene this afternoon's hearing to assess our nation's progress in combating alzheimer's since the enactment of the national alzheimer's project act which i co-authored

with then senator evan bae 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 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 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's is the only one of our nation's deadliest diseases without an effective means of prevention, treatment or cure. it is now estimated that nearly one in two of the baby boomers

reaching age 85 will develop alzheimer's. as a consequence, chances are that the members of 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 les than 3/10 of 1% of that amount, less than $600 million a year on research and believe it or not, that is an increase that many of us have worked for. you can barely see the expenditure level on that chart. alzheimer's is receiving funding that is clearly disproportionately low compared to its human and economic toll. look at this second chart. we currently spend $5.4 billion a year for cancer research. $3 billion a year for research on h.i.v./aids and $2 billion for cardio vascular research. all investments that have paid dividends. these investments and 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 set its goal to prevent alzheimer's

disease by 2025. to meet that goal, the chairman to have advisory committee 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 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 is less than 1%. and that is the context that we need to put it in. that's why i have introduced the 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 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 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 healthcare 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 she has scheduled this hearing so early in her tenure as the chair of this committee. that should 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 stemley. i will 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 alzheimer's disease was a normal part of the aging process. and that treatment options were either hopeless or unnecessary. we now know today that is just flat wrong. if we make the investments now we can 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 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 over $1 trillion in just 2050. think about that. a trillion dollars. that is not a sustainable cost for individuals, families or for federal budget. family caregivers are the unsung hovers the alzheimer's epidemic. they provide the largest portion

of care for individuals with the disease. caregivers typically endure more stress as a result of their increased responsibilities. while family caregivers provide needed support for their loved ones for as long as they can, many patients 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. with a few long-term care financing options, most families depend on the medicaid program for their nursing home funds. it is estimated 28% of the medicaid budget is spent on long-term care services, much of that for alzheimer's patients. i know miss stemley can speak of some of the challenges in accessing medical care for her mom. by the way, her mom worked hard

all of her life and retired with a pension. however that was not enough. this is week we're voting on the budget. i'm worried for our country and for families like miss stemley. the budget we are currently debating has massive cuts to medicaid. nursing home care and other healthcare services for seniors and disabled would be slashed by $5.4 billion in missouri alone in the budget we are 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 institutes of health

has flattened and suffered over the previous years. i am hopeful that the amendment that i am sponsoring with the chairman will be a bipartisan agreement. we cannot continue to shirk our responsibility in the united states to advancing medical research. there is no area that is more deserving of additional dollars in 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 and their caregivers are not even aware of their diagnosis. that is incredibly troubling. we cannot go back to the old days when people were not informed of their diagnosis. in a misguided attempt to spare them the truth. not only are many not being alerted of their diagnosis but many believe that the mortality

rate for alzheimer's patients is much higher than projected. a study found that alzheimer's is likely the third leading cause of death following behind cancer and heart disease. we need to tackle this crisis head on and provide families such as yours with as much support as 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 reach in treatment by 2025. thank you for your leadership chairman collins. i also want to thank all of you for being here. senator collins: thank you very much, senator mccaskill. i should correct myself, senator moran is also a co-sponsor of amendments that we'll be offering to the budget for those of you from kansas out there, i just wanted to make sure i corrected the record. >> may i be added as a -- senator collins: absolutely. i would be delighted. i'm glad that senator tillis from north carolina and senator

blumenthal from connecticut have joined us. i know they care deeply about this issue. we now turn to the testimony of our panel. i'm pleased that joining us on the panel are barbara, better known as b. smith and her husband, dan gasby. b is a well known super model who has graced the cover of fashion magazines and she is also an accomplished restaurateur, those who have eaten at union station know that. a 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 will hear from dr. richard hodes. who is the director to have national institute on aging at the national institutes of health. dr. hodes also represents n.i.h. on the h.h.s. secretary 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 to serve as chair of the advisory committee. kimberly stemley has already been introduced by our ranking members. she is from st. louis and will be talking about the challenges that our nation's many caregivers alzheimer's patients face every day. we welcome you as well. finally it is a great pleasure to welcome to the committee dr. heidi wiereman who is with us here today. for more than 10 years she has served as a geriatric physician in portland, maine. she specialized in the challenges that both physicians and caregivers face when caring for an alzheimer's patient. again, it is truly touching to

see the sea of purple gathered in the hearing room today. but it is also a stark reminder of how many individuals and families' lives are affected by alzheimer's. so i want to thank advocates who have traveled to washington. we look forward to hearing from the testimony and we will start with b. smith. b. 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 5 million americans who have alzheimer's and their caregivers but for the future generations who'll 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 is i'm going to fight. i'm going to exactly what i can to be best and to be better than

the other person that i ever was so that there are lots and lots of people out there who are probably feeling the way that 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. 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 as i can help. if i have to tell somebody that they shouldn't do something because, i'll do it and they will tell me i want to do it or i don't want to do it. but it is important to me, it has 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. if i can help people and they can help me, we can do it together, even that is fine. however we do it, we just have to do it. senator collins: thank you so much. mr. gasby? mr. gasby: thank you, chairman collins. i want to thank you for having me. members of committee. 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. and this is the one time that i know that i can make a difference because i have 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 recollects did a television show who did 100 radio and television commercials, who basically always gave back and now has to wait for people to help her. you know, i'm reminded of a song that of all people, jay z and kanye west wrote. there is a lyric in there called "the pain ain't cheap." the pain ain't cheap for the 5 million americans who are suffering with alzheimer's disease. the pain is 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, i'm broken. and when you see someone that you know knows that they can't do what their body and their mind have told them for 55-60 years, you realize that you have got to try to step out, step up to 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, or 2050 when it is estimated that 15 million people will have alzheimer's. 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 a two-party system, a democracy at work.

the greatest resource we have is what we learned from generation to general thration we pass down -- generation that we pass down. when you have alzheimer's, you people that lose that perspective. people in in their 40's now and 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 phenomenal. this is what alzheimer's is. when you look it a and what my wife has gone through. when you look at what is ravaging the frarne community, i'm twice as likely to have alzheimer's than a caucasian count part. when you look at the fact within my community we're getting tested and treated 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 we have got to stop it right now. now, we have invested millionors dollars, billion s of dollars as you said earlier in heart disease and cancer. but we pay a pitance to alzheimer's disease. we know that by using a pet span scan we can determine that there is am beta flak in the brain. if we find that has happened, we can begin the process of taking care through diet, exercise. through that we may be able to ward off a slowdown so that we can awlue government funding and the impel eaktchal capacity in this one campaign make a

difference. i'm here today because i believe in america. you know 30 years ago, if you walked warned a telephone you had it on your back. and today, when you walk around it is in your hand. i know that we can take the gene code and break it down. it used to take forever to figure out we had genes and now we understand the differences in different population groups. i know drug trials make a difference in drug testing and treatment and bringing positive powerful medicines to market. i know that we ve within the brett and depth of this great country people who are committed, last night i was at the alzheimer's dinner and i saw 1,000 people plus who all know that the pain from alzheimer's is not cheap.

what i saw that thr 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. so i come here today to tell you i don't believe in big government. i believe in good government and know that what's happening in this committee is going 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 the author of the book "still alice." as i was looking at him, the

only thing i could think of is here is a 12-13-year-old if i said to him right now what is a cassette deck, he would go huh? if i said to him what is an 8-track? he would 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 ansd their kids are going to say what? huh? we have it within our capacity here in this country to make that difference. i want to be a 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] thank you so much. dr. hodes? dr. hodes: thank you, chairman

collins, ranking member mccaskill, members of the committee. thank you for the opportunity to be here and for the support you have provided to n.i.h. and research and thanks to everyone in the room for being a part of what we are doing. i would like to spend the next few minutes giving a few examples. the state which gives us great hope, greater than ever before that the progress we're seeing now will lead to improvements and the ability to treat, cure and prevent alzheimer's disease. if we can move to the next slide. this probably need no elaboration. it was reffed to by chairman collins. it is an illustration of where we stand now in terms of the number of people affected with alzheimer's disease. to the right in the bars illustrated are the estimates of cost already showing alzheimer's disease to be the

most expensive disease and condition we pace in this country with it increasing several fold as the population at risk increases. there is reason to think, to hope that we succeed in changing this trajectory. next line. some examples in what were alluded to dan gasby alluded to imaging. not possible just a few years ago. these are scans that look at two lesions until recently were identifiable only in autopsy. this illustrates our ability now to image, you see these slides here. normal individuals with little of these deposits. the next slide shows in contrast an individual with alzheimer's disease. affected with dementia and cognitive change. you can see by the color codes and intensity, the increase in

that is formed in the brain if we look at the next slide, here is another individual, cognitively normal who has accumulations of amyloid in the brain. potential before there was irreversible damage done, a stage at which we can intervene. attempt to pri event symptoms and their progression. remember this and turn to the next slide which is another illustration of progress made. i apologize for the difficulty in reading it but it is a time course of genetic discoveries and it shows in the early 1990's we discovered those genes responsible for very rare but tragic familial form alzheimer's disease. then there was a period of about 15 years we didn't discover any new greens. remember those genes that cause alzheimer's in families and turn to the next slide. we were able to identify in these rare and tragic families

by imaging, identify them years and decades if we know they are going to have the disease. in the bottom left is the relatively normal scan of individuals in their 20's whether they have this alzheimer's causes gene or not. to the right, individual who is did not inherit the gene from their parents look relatively normal in the brain where on the bottom right, gene carriers already showing signs of the disease decades before symptoms. exercise exactly in these individuals that we are doing prevention studies by intervening with treatments before damage, loss of cognitive function occur. a new generation of hope that we can make a difference with this kind of treatment. the next slide. just to emphasize these studies are being done in great and novel partnerships with public and private sector investing to the common goals identifying new targets for alzheimer's disease, monitoring changes canned tell early whether it is successful.

the next one, another important aspect even as we search for cures. we recognize the importance of doing all that we can to take care of individuals who are now living with the disease. and those who care for them. this is an example of caregiver study reach. looking at interventions that would make life better for people with alzheimer's disease and those who care for them and the studies, it was enormously successful, it allowed people to live at home longer and protect the health and prevent against the increased risk of disease and caregivers. that is so common and being illustrated through through the v.a. and in an toast decrease the burden of those who take on the most important job of caring for those living with

alzheimer's disease. the next slide. an finally i just want to illustrate that under the national plan, which has provided a new intensified focus, we have a spectrum of commitment, illustrated here the goal of curing, preventing alzheimer's disease by 2025 and equally important goals having to do with 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 addressing any questions you may have. thank you. senator collins: thank you very much. dr. peterson, welcome back. dr. peterson: thank you, chairman. good afternoon i would like to thank the committee for the opportunity to discuss the importance of alzheimer's disease for this country and also commend senators collins and klobucher. for introducing the resolution to double the funding for alzheimer's disease research in 2015 and aachieve the goal of

the annual research budget to $2 billion in the next five years. as you know, in 2010, congress unanimously passed and the president signed into law in 2011 the national alzheimer's project 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 has just completed its recommendations for the 2015 plan in january. the primary goal of the plan as dr. hodes has just mentioned is to treat and prevent alzheimer's disease by 2025. this goal is a short 20 years away. a feature of the recommendation includes the recommendations the federal government will spend at least $2 ball year in research on alzheimer's disease. as chairman collins has indicated, this figure is pale

in this comparison to what we spend on cancer, h.i.v./aids and cardiovascular disease. the annual death rate for alzheimer's disease is escalating. again, alzheimer's disease is an incurable disorder with no survivors. in 2013, david ram ron hosted a summit on dementia. in preparation for that meeting professor nick fox and i wrote a comment riverry. in 2014 the united states spent $26 billion caring for people with alzheimer's disease.

if we were to spent 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, spitzer land, the world health organization sponsored the first conference on global action against dementia. at that meeting, i presented something similar to what dr. hodes has just shown, as to what the current numbers of those with alzheimer's are in this country, what they are projected to be in 2050. then we imposed the scenario what if we delayed the onset by five years. and the other, what if we were able to slow the progression of the disease. we might have the same number of individuals but to a lesser degree. in a recent report from the alzheimer's scotion it is projected that if a treatment

were to be introduced by 2025 that would delay the onset of alzheimer's by five years, that treatment would reduce the number of individuals affected by the disease by 5.7 million by 2050 and save all of the payers include 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 its investment after a treatment became available. all of the economic models converge at this point. they indicate that it 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 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 govel 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 goal if adequate funding were available. dr. hodes and his staff have established milestones for the execution of the plan and now with the passage of the alzheimer's accountable act are working diligently to prepare a professional judgment budget to submit to congress outlining expenditures necessary to accomplish the goals set north the national plan. we cannot wait until there is a

more convenient time to increase funding for this disease. projections indicate that alzheimer's disease will bankrupt healthcare system as we know it today. we simply cannot afford to spend the aforementioned over $1 trillion a year as is projected in 20 50 to care for individuals with alzheimer's disease. the impact on individuals and families is enormous. the cost to our 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, 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 promise promising drug made at an international meeting last

week in nice, france, we're encouraged something is in the pipeline. ultimately it will be up to the individuals on the committee to make very difficult decisions in funding for alzheimer's disease and related disorders going forward. to make bold decisions to alter the course of this decision now so that it is not a burden for next 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 up opportunity to address the committee. thank you. senator collins: thank you, doctor. ms. stemley? ms. stemley: good afternoon .

on behalf of the individuals living with alzheimer's disease and other dementia, thank you for the opportunity to testify before you today. alzheimer's is a devastating progressive and ultimately fatal disease. more than 5 million americans are currently living with alzheimer's disease or another dementia. 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 republican and democrat. 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 caregivers. i find 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 nursing facility in missouri and i'm 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 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. all the rationalizing and denial came to an abrupt halt when i received a call from a stranger telling me my mother was in the middle of martin luther king drive in st. louis aleaned confused. she had slept all night in her car on the side of the street. my mother was along way interest

home. that day marked the beginning of our journey with alzheimer's. my mother's diagnosis was the result of three different evaluations. neurologists formed a number of blood and cognitives on her ultimately concluding that it was in fact alzheimer's disease. there i was an only child caring for my single mother who had alzheimer's. i knew then that the world that we would 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 did not 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 alzheimer's 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 myself and my mother as well as what our next steps should be considering options for her care. i also learned how the cope with -- to cope with all the emotion i was feeling throughout the 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 had exhibited other warning signs that raised concerns about her safety. for example, my mother started a fire in her condo one day. 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 outlets that she needed. she was able to live there on her own for another four years until her memory loss had 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 first hand the gaps in our healthcare system when it comes to dealing with this disease. far too many physicians are not familiar with how to properly advice patients and their caregivers after an alzheimer's diagnosis. it took a friend's advice, not my mother's healthcare provider in finding the alzheimer's association to get the basic information about what to expect next. no one should ever feel as lost as i felt back then. there is no treatment for alzheimer's disease, however there are 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. it would ensure that families like mine, who are facing an alzheimer's diagnosis, help guide them through their next steps. to some extent, i feel blessed. i eventually found the resources and the 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 femme much less alone in this fight in the beginning. until a cure is found, we must work to support the family, the caregivers 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 have also had the opportunity to speak with many researchers about the current progress that has been made towards development for a cure for alzheimer's. i'm disheartened because i realize despite progress, we still have a very long road to walk. seeing advancements in other areas as a result of strong federal investment 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 spare millions of families the same heart ache i feel every time i see my mother. i would say that alzheimer's disease is one of the worst out there. i am for you and all of your congressional colleagues. research is only the 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 focus on improving the lives of those affected by alzheimer's disease. if there is one thing i would ask that you take away from my testimony, it would be that alzheimer's disease not only impacts the diagnosed person but that love them very dearly. thank you so much. senator collins: thank you very much for giving us your perspective. [applause] dr. wierman? 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 i opportunity to be here with you. i specialize in treating those with dementia and working with their caregivers.

am a geriatric physician in maine with roots in oregon. clinically my work is in dementia. i evaluate individuals and work with their family at our outpatient geriatric center. i spend time in the hospital working with older adults who are hospitalized. i work the prevent delirium which is particularly devastating. it changes the trajectory of demeant that 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 particularly those with dementia as their disease progresses. projections for 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 structure if we do not act now to do something. dementia stresses our state in many ways including increased burdens 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 and in maine, about 2/3 of patients with dementia die in nursing homes. we have fewer young people which means fewer formal and informal

caregivers to help. within our health system, 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. 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 dent in wra is not a routine parts of clinical training for most providers and staff in many care settings. it is critical that our system deal with cognitive assessment and care planning. to deal with this progressive

disease. currently dementia is a chronic terminal illness. 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 first met mr. and mrs. keller about 10 years ago when i dye diagnosed mr. keller with mild cognitive impairment. sadly his disease progressed to alzheimer's dementia. he had declines and issues with walking and swallowing and had issues with eating and started to develop frequent pneumonia. 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, paid caregivers and

intermittantly from other family. eventually we involved hospice and he was able to die in his own apartment as was his wish 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 treatment of her own. after her husband passed away did not see her for a year and then she was on my schedule as new patient. she had developed memory loss. she no longer had a spouse chocked care for her. her children lived away and couldn't provide support. she continued to live fairly independently with paid caregiver support and transitioned to an assisted living environment. she fell and had a head injury and developed delirium. she has continued to decline

today. she and her husband tried to provide 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 they were not able to provide the same support for their mother that allowed their father to die at home. their resources simply are not there. we need more funding and options in housing to care for individuals with dementia. i believe in this case we could have had a better outcome. i have other cases and scenarios that i can share but 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 decombleant now to support alternative housing options and creative community support for individuals with dementia. ultimately most important to

increase funding to identify ways and find a cure for this endeavor stating disease. senator collins: thank you very much for your testimony. ms. smith and mr. gasby, 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 clinic cal trials? mr. gasby: we are affiliated with the brain health registry. it goes to get people to participate in giving information so that they can be considered for drug trials. one of the main impedestrianments to getting

more funding and 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. the experiment, things that have happened in the past, myths and some realities african-americans and people who are not caucasian are not participating. what people don't realize is that to bring the drugs to market cost billions of dollars and you need to have a genetic pool so you need different people from different backgrounds. you need women. you need men. you need asians. latinos. african-americans. and this brain health registry registers folks so they can be considered for these drug trials. what we wanted to do is break

down that stigma that it is ok that the government does good things and going to trial, it is not going to be the tuskegee experiment all over again. there are so many myths and taboos that have been economisting out there and we wanted to make sure by -- existing out there and we wanted to make sure this is done not just for ourselves but for the future to find the right medicines. senator collins: i want to thank you for doing that p.s.a. mr. gasby: one of the great things it did was increasing participation 6% within the minority community. more people inside up. senator collins: that is really terrific particularly since african-americans are more likely as you pointed out in

your testimony to get alzheimer's. i think you're being out there has really helped to increasea awareness and i thank you both for that. mr. gasby: thank you senator. senator collins: dr. hodes i started visiting research centers and i talked to dr. just two weeks ago i spent an hour and a half ago at massachusetts general hospital talking to the all-time researchers there. 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 wasn't just a few years ago. alzheimer's could only be diagnosed definitively through a brain autopsy. now we can do imaging that shows

the beta-amyloid plaques and tangles. i learned that there is actually an antibody that can be given when the beta-amyloid is developed. i do know how effective are what stage that is that, but there's so much exciting research going on, just at mayo and mass general. i can't wait to go to other research centers, i'm sure there is one missouri as well. the problem is that with only $600 million, you can't possibly fund it all of those exciting research applications. can you give us some idea of what percentage you were able to

find -- fund of the promising projects that are out there? dr. hodes: they are proposing research far in excess that we are able to fund it right now. it is superficial way, just by looking at the success rate we have for the applications, so that of the applications that have come in the areas of alzheimer's research, we are able to fund it in the range of 11% to 12%. it is easily said that twice that number or more are considered by your review by absolutely outstanding and meritorious support. so that even let -- even that level, there is great room for more that could and should be

funded if there were adequate resources. beyond that, with sufficient resources, the ability to recruit and initiate new areas that are not even in the mind yet of investigators is a dividend that we very much look forward to. senator collins: if researchers saw a bigger pot of money available, that would permit more submissions. 11% to 12% will at least double that number are worthy of funding i think is another strong argument. senator mccaskill. senator mccaskill: i want to thank all of you. it's true that this is proportionately affects women is that correct? more women than men, and more african-american and caucasian? let's talk a little bit about the reality of medicaid in this equation. we have two issues we are talking about, one is investing in research, the other is making

sure the care can be given. ms. stanley -- stemley, we live in a state that has cut medicaid i $400 billion. i'm not sure that most people realize the percentage of nursing home patients that are suffering from alzheimer's and it needing help for medicaid. what would you have done? 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 alzheimer's. and you found yourself having to access medicaid services for long-term 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 has done in their budget, and the money was gone because it was october, what would you have had to do? ms. stemley: i don't know. i was not familiar with the medicaid process until we fell into this world. there have been many nights through this process when understanding the cost of long-term 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 cost 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 doesn't have the pension and we don't have the resources to pay $5,000 $8,000, $10,000 a month to have a long-term care facility. i didn't know what we would do who are were going to be denied. i didn't know she made too much, all of these fears come into your mind -- do i make too much do i make too little? it was an option press to be denied, had to have the care. one of the very disheartening parts to this for me, and you pointed out, is my mother is a very proud woman. she did work for 33 years. and she worked for the federal government for three years -- 33 years. today, her mind is still think

she has to go work for the government. we play and do those sorts of things. but you know that all of those years of work are exhausted by disease and not transported forward through inheritance, her grandchildren don't get to see it and there aren't things that she is leaving behind for her family, but this disease is exhausting everything, it's heartbreaking. so i don't know what we would do but that alone has been my fear many nights, and that's why i said i thank god for medicaid. at the same time, we have never needed for anything. we are a middle-class family. i have never been in the position to have a need it, and i was humbling, to be honest. i sure am grateful for it, because where would we be?

senator mccaskill: i sure hope that you carry that message, because the stereotype is harming the program. people who assume that people who need medicaid are only people who haven't worked hard, or people who are trying, and nothing could be further to the truth, particularly when it relates to long-term care in this country. it seems to me that not funding research is delma -- budumb, and into doing to not fund care is cruel. i hope you will continue to advocate on these issues. senator warren: i apologize my delay, i wanted to be here. all timers forces families to watch helplessly as their loved

one slip away. according to the alzheimer's association, we will spend $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. when the director of the national institute of mental health testified in front of the health committee during the last congress, he noted that 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 reduce the purchasing power of the nih by nearly 25%. last year, nih spent only $562

million on alzheimer's disease research. that's about 2/10 of 1% of what the disease cost us last year. dr. hodes, can you tell us how the reduction in support of funding reduced your ability to research alzheimer's? dr. hodes: it is certainly not being limited by our research, but by our ability to support it. even if you look at the number of outstanding applications currently being proposed by scientists, and the proportion of those we can fund it, it is a conservative estimate that we can fund a twice as much as we do now simply as the outstanding meritorious ideas being proposed and the move forward at a

greater speed. that's only the first iteration. with more resources we will be able to recruit new infrastructure for more innovative approaches. that's the first-order response. senator warren: so you were saying we are funding half or fewer of the potential research avenues that mike is secure for all timers? -- alzheimer's. dr. peterson, could you add to that? dr. peterson: another implication of that is with the reduction in federal funding there is also a reduction of new investigators going into the field. that will cripple us down the road. if the young investigators these old guys struggling for funding a research setting, they are saying how am i going to survive? i'm afraid we are turning off the young generation of investigators that going to be

the ones who lead us forth in the future trade i see that is a real concern. senator warren: high cost of now, high-cost long-term. every member of congress i've spoken to says they support nih and the support more medical research. but medical research takes money, and congress has done absolutely nothing to actually get more money into the agency. the house republican budget and the senate republican budget will release last week, and both say that they support medical research funding, but with a 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 that increases -- cuts, not increases. earlier this year i introduce an act that would boost nih funding .

it's not enough, but it's a start. and we can do without raising taxes, without getting critical programs without gutting file 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 alzheimer's. an opportunity to save billions of dollars in unnecessary health and long-term care spending. and to give family's their loved ones for more precious time of. we will miss that opportunity unless congress steps up and funds the nih. thank you, madam chairman. [applause] senator collins: senator scott. welcome.

senator collins: thank you for holding -- senator scott: thank you for holding this hearing, thank you for your investment of time and energy. an all of our offices have been filled your enthusiasm in your real life stories. i can't think of anyone here on this panel who has not been impacted personally by alzheimer's, and for me, all timers and parkinson, and watching the challenges of your loved ones, my grandmother passed away april 20 9 2001, and seeing the devastation of the challenges she faced. but also those who been support systems. if you've have been blessed with the opportunity to care for someone with alzheimer's, would you razor hands? -- would you raise your hands?

god bless you. it's amazing the impact the disease has that a little patient, but on the family. the loved ones. in such a powerful witness that folks who stop by my office today spend 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 you may be impacted by the disease as well. i thank you for your energy in your enthusiasm. he keeps all of us focused on the topic. my question is for dr. hodes. thank you for your expertise. to get him to talk about the success we've had in south carolina, the medical university of south carolina, so many folks in say prices hospital system that have invested a lot of time

and confer the resources to make progress. particularly enjoy also in the received more than $20 million in grants researching treatments and caring for hundreds of alzheimer patients each and every month since 2006, the 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 for researchers in our state who believe with the right resources, they can do the most amazing things. the question i have for you, dr., is what does progress look like over the next 10 years from your perspective. are we meeting the national alzheimer's project milestones and updating them appropriately so our researchers are working on the most critical projects? can you point to specific achievements in collaboration and discovery that have advance the science on this issue?

dr. hodes: there is well justified enthusiasm about progress as we have more insight into the mechanisms behind alzheimer's disease. the planning that's in place is an intensified product of the national plan. on a regular basis, most recently with the summit held just last month here in bethesda come in the washington area, convene regularly experts to help us updated or new the areas of highest priority and to establish milestones, what we need to account was year by year in order to translate those priorities into success that is the objective of the plan. in terms of some of you concerts we've seen in recent years, as noted in some of my opening comments and comments for the record, we have seen progress in the ability to identify early-stage alzheimer's disease in the individuals long before the appearance of symptoms,

giving us opportunities that just didn't exist years ago to intervene with new treatments aimed at new we identified molecular targets and understand whether they appear to be working or not by tracking biomarkers again long before what identify progression system to manage disease. this is an example of the kind of progress we are making. i should add the much of as we are we are pursuing this research, we are pursuing quality-of-life. the research proposals that are coming for your state and across the country are enormously gratifying and exciting. coupled with it i will say from our perspective is the enormous disappointment and pain and anguish of the great number of those meritorious applications and we are unable to support. we making progress without question, the pace of that progress is being limited by the amount of research that we can support. senator scott: thank you. senator collins: senator whitehouse.

senator whitehouse: let me open with the question, then the comment. i'm on the budget committee, i haven't been able to be here for the whole hearing, could you be more specific about what you think the prospects are for a cure? how confident you are, how many viable paths toward secure there are? so that a non-dr. can get a sense of how much confidence we can have? dr. hodes: thank you, senator whitehouse. to difficult one to answer definitively. i think there's enough exciting research out there perhaps on new targets, this is a complex disease -- dr. peterson:

thank you, senator whitehouse. to difficult one to answer definitively. i think there's enough exciting research out there perhaps on new targets, this is a complex disease. in early phase one resulted indicated that in fact there may be a path forward with this particular therapeutic. the plaques or reduced as they measure them in patients over a year, and the patients improved clinically relative to those who were on placebos. very early phase one study, they are moving forward with phase three. i think it's this type of discovery that is going to lead to a hit or more than one hits in the relatively near future. to say how many and what is difficult. but i am encouraged that we are on the precipice of really handling this disease one way or another. dr. hodes: i will reinforce or ron has said. we don't know yet in this

complex disease exactly which are going to be the optimal targets or the accommodation of targets so that are integrated approach now with the input again from all the brilliant minds we can converge on the question is to be taking examples such as those which run mentioned, the best candidates for freeman now in me the most rated -- for treatment now and realizing it's building those into the next candidates for intervention so that we may have short-term successes with some of the current understanding we have come up with couple that with a commitment to developing deeper insights for better approaches in the future. senator whitehouse: it's inspiring to hear that. i'm struck by the same fact that my colleague senator warren was struck by, and having just work through the budget at the committee level and having seen

the house budget on the floor with the republican budgets right now, people can talk a good game, with the fact of the matter is that if you like sequester, the house budget cuts below sequester online discretionary nondefense spending. by nearly $300 billion. it's 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. we had a pair of republican senators saying how critical it was to invest more national security.

we hear people talk about how critical it is to invest more in medical research. but when it actually comes to the budget, well over $1 trillion goes out the back door of the 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. and do you know how many tax loopholes either the senate republican budget or the house republican budget closed to address the deficit? or close to address national security or close to address medical research? zero. the true primary operating principle of both budgets is that every tax loophole is sacred and everything else comes second. it's very frustrating to sit

here and here you testifying such good faith, and hearing such progress and know how many people this illness affects, 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 is expired. senator collins: before i call in the former chairman -- [applause] senator collins: before i call the former chairman of the city, senator nelson, with whom i worked so closely in the last congress, i do feel compelled to respond to senators'comments. alzheimer's affects people whether they are democrats republicans, independents, greens, males, females caucasians, asians african-americans.

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 alzheimer's for years. and we've made not nearly enough progress, that we have made some incremental progress. and it has never been a partisan issue. with all due respect to my dear friends from rhode island, i would say if we want to achieve what everyone in this room wants us to achieve, 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

let's work together, together. [applause] senator mccaskill: i agree, and we do have our colleagues that will work together. we are fortunate that one of them as chairman of the committee, but we do have challenges that are represented by, i'm not pointing out just republicans are just immigrants, but there are members of congress that do not see the value in funding government agencies to do research. and what we will find is there will be some of our colleagues that will work in a bipartisan way, and i hope my think you know senator nelson is one of those, i am one of those, you are one of those. but what we have to look at -- i

want the advocates to work on realizing it's time to hold everyone's feet to the fire, regardless of their party, but the reality needs to match the rhetoric. the can engage in the rhetoric of i support alzheimer's research and then vote to cut funding nih. that doesn't work. it will be my colleague susan collins that will be in favor of that, but there will be some and those of the people you need to focus in on, no ottawa party they are. -- no matter what party they are. i think that is the issue, 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 funding of everything from many of the long-term care programs to come in fact, nih funding. not you, but others. senator collins:

senator nelson, it's great to have you here today. senator nelson: is great to have you here today. thank you for the great partner you were leaving this committee. those of you in the audience applauded to two things. you applauded higher money spending for nih for research. and certainly that bargraph right there indicates that more is needed over $5 billion for cancer, 3 billion for hiv-aids $586 million for alzheimer's. you also applauded bipartisanship. i want to give you an assignment.

this committee is bipartisan that's the way it's been run the last couple of years, the way it's been 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 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 mrs. stanley and mr. gadsby -- ms. stemly and mr. gasby. a ms. smith county takes courage. it's great to see both of you again, thank you for coming back to update us and thank you for your continuing work. dr. where men -- wierman, when

you have conversations with your patience, can you broach the subject? do you tell them what you are going to have to plan? says he is a report in the "washington post," that says 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 patience -- patients? dr. wierman: early on its about the diagnosis and what treatments are available, and whether now addressing current issues, usually in subsequent visits 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's important to them. but also includes looking at what their financial situation is an understanding what's realistic for them to plan for in the future. i recommend a lot of consultations with other law attorneys. and ask caregivers to be realistic about what they can offer. i think that's 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 the ultimate backup if they get into crisis. despite all of our planning, that's where people have to go in our community. it's really unfortunate because it's really not a great place to be when you have cognitive impairment. it's very much a part of my practice to do that, i think

it's really challenging for primary care physicians particular take care of a broad array 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, you got to talk with your families. you've got to make sure the you are thinking about the what if at its hard to do that, but we all need to be doing that whether we have dementia or not. senator nelson: all of you, this is one of the larger audiences for committee hearings in the months that we've started this new congress. i would take your concern, your energy, your activism and share it. 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 just blows her mind what's 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 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 the hopes that he can get here, and boy, what good timing. while he is getting set up, i'm just going to follow up with a quick question for dr. ewierman, i was surprised to find out that the treatment of patients with dementia is not a traditional treatment. if you look at traditional treatment, and the number of people and their families are going to be affected in the near-term, we hope we will have a cure with prevention for the long-term. that lack of training really surprises me. is that changing now, in your

judgment? why do you think there isn't more emphasis put on said training. ? dr. wierman: there's been a lot more education globally at the residency training. i think we have made some headway in the medical community. i think it's 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 in working with dementia. what they get probably isn't enough at this time it as in my experience, this disease, each of us has our own individual personality and experiences, you throw 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 a lot of training to work with these individuals and their families. you really need to do that.

there needs to be more emphasis and more time on that, this goes from medical providers, from your front-line staff, whether they are office assistance and people answering the phone and scheduling appointments and medical communities and we need to working within our outside the medical community in our larger communities with education and training for identification. we have some a lot in the banking community about looking for exploitation and that sort of thing, we need to continue that much like at one time we were training hairdressers to look for and talk with their clients for evidence of physical and emotional abuse, we need to do similar things with others in the community to help us identify individuals who are having issues so we can work with them. senator collins: thank you. senator kaine. senator kaine: thank you for

filibustering a little bit until i got here. i was in armed services meeting. i wanted to thank you guys for doing the work you are doing to really educate and demonstrate the challenges of early-onset alzheimer's. it such a difficult thing and obviously in the midst of a difficult thing to try to help others is really laudable. i really want to express my appreciation to you for that. it's an issue on dealing with my own family, it's new and it's hard to figure out. the challenge for family members and caregivers, it's just a hard thing. i express my gratitude to you for being willing to be courageous and hopefully educate others about this. dr. gasby: thank you. we have been blessed with this

great fruit of this great country of ours. 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 don't have anyone, any resources, and they are dependent totally upon the system, and you see how they are falling through the cracks you realize that if you are going to stand for something it's got to be more than just yourself. coming from brooklyn, from humble beginnings, and having have a chance to meet one of the greatest human beings have ever met, my wife, the nicest person, she taught me how to give than what philanthropy was all about. i know what we have to do, it is not about us, it's about the folks behind us, it's about those folks who come at night when you can't sleep, because you know that the person another room that is going through holy hell, and you have to get up and

go to work, or you got to go and help change them, or you got to go quiet them down or you just have to be able to hold them, you understand that if you are going to stand for anything, stand for people who need the help the most, and the caregivers needed, and we've got to make a difference. i'm blessed that i have a great partner, but i'm also blessed that because of the opportunities we have been afforded to try and give back, so thank you. you play the hand that you are dealt, but you play to win. i want asked and the other witnesses, especially those from the research community, talk to me about early-onset alzheimer's

and from what the research is telling you, how is it different? or is it not really different, just occurs earlier in life? is it the same medical condition is later onset? or is it different in significant ways that we understand, if you could? dr. peterson: early-onset is defined by the age of onset, but we have learned in recent years that it's probably the same underlying disease process. having said that, a person who is affected with alzheimer's disease say in his or her 50's, versus somebody in their 80's may have different contributions to the clinical picture. they look the same, they are forgetful, the develop problems with thinking and activities of daily living, but in the older person, there is the amyloid and

the plaques and the tangles, but also other pathologies, vascular disease, other things. and the younger onset person, it's more likely to be a pure form of the disease with the amyloid protein perhaps the top row to. that in both of them are comparable treatments that are likely to be effective for young onset of a work for old onset and vice versa. there may also be a slight predilection towards a more genetic contribution to the younger onset disease as with most diseases when they occur earlier in life, they tend to be more genetically loaded then later in life. but basically the biology of the diseases are quite comparable for late onset and early-onset. senator kaine: how about the caregiver side? i'm certain you already testified a good bit about recommendations you might have for us, just the sheer number of caregivers in my state, and

ensuring all of our states. it's 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 alone bit. ms. stemley: i'm here on behalf of caregivers, and i am one. their medicare givers in this room that have different stories, many of these stories. they are all different, but we share the same sorrow, we share the same pain. we share the same hope, and we share the same vision that this is going to end in our lifetime. i -- we are going to fight into see this end.

we are collectively coming together as 1/5, and that's saying we are asking for what we do we need now? we need for the hoback to be passed, we needed to be passed in this congress. is going to improve care planning services for individuals and families that are living with dementia. once they see that diagnosis, they walk out of their doctors offices, receiving the diagnosis, and knowing what the next steps are, that all timers disease diagnosis will be in their medical records, it will follow them. it will go with them wherever their lives may take them, whether they begin to then develop diabetes or anything else, they will know that this doctor will know this patient has alzheimer's. there are some additional intricate needs that i need to provide for this individual to give the best possible care that i can. we need this act to be packed --

pass in this congress, we need it now for my situation is a little different because i'm five or six years down the road now. caregiving, hurray planning services didn't happen for me exactly where probably would've wanted to. had the hope act been in place for me. but it can help a lot of other people. it could help millions of people. and we need that help to make this a little easier, because it's hard, and we need help to carry this burden, because we are carrying it the best we can but we just asking for help. senator kaine: thank you, thank you madam chair. [applause] senator collins: thank you senator. senator tillis is on his way back, that means i get to ask another question. my question is for dr. peterson and dr. wyman -- wierman.

you said you look at delirium as well. i wonder there is research that shows the delivery of it older people after surgery where general anesthetic has been involved which i have seen cases of. can be a trigger. i see dr. hodes knotting. is there a link, can that be a trigger of all timers? -- alzheimer's? is there a link between the delirium you sometimes see it older people after an operation that involves a general anesthetic and dementia? dr. hodes: there is good data to a couple of points.

the first weather delirium can be succeeded or followed by decreasing cognitive function and progression of dementia, the answer appears to bs. but so also for general anesthesia, even if there's not delirium. often after general anesthetic, there can be a short-term decline in cognitive function, most people recover fine, but the failure to recover rosalie quickly is also predictive of long-term decline. both of these from the results of deep anesthesia or delirium you seem to be capable of accelerating the functional decline. senator collins: dr. peterson? dr. peterson: i agree, it also has to do with cognitive reserve. sometimes with people who are developing dementia of one kind or another 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 the system that is starting to gradually fail, and consequently be a harbinger of what could be dementia in the future. it's difficult to figure out the cause and effect, but it's common. senator collins: dr. marmon, in your response, i've been discussing this issue for a couple of years with anesthesiologists from maine med where you work, and others on whether this should be doing more with older patients to be careful about what kind of anesthetic they use, only use a general one of it's really necessary, could you eliminate us on this as well?

dr. wierman: clinically i see people and function well before surgery and are not doing so well after. as we have more research now we can identify their changes happening before it is evident in day-to-day life, my suspicion is that it's those people that we see have the decline after and as it is, is like a stress test that you failed. that's kind of how i thought of it as well. i think we just don't know, i think that definitely in an older population doing more assessment prior to major surgeries, if it's a plan to process so you can at least understand what the risks are going into it. so the people can incorporate that into their decision-making. i think that's really important. but as is outlined, think we need more research into what anesthesia is best, and how to further re-stratify folks so that we can do the right thing for them and not put them down this path that we can't stop.

dr. peterson: it's sufficiently important that the alzheimer's group has formed a group looking at this issue they meet at the international conference every summer. this is the hot topic with regard to brain resilience and cognitive function and its role in the development of dementia. it's a good question. senator collins: that is interesting. dr. hodes: a good and important question. research directed at this actively now includes approaches to using eeg measurements of brain function during anesthesia , with the attempt to monitor the level of anesthetic with an eye towards brain activity in anesthesia and look at the effect of that kind of monitoring on cognitive outcomes. that's one area where we may be able to develop quick answers that will make a difference. senator collins:

interesting. thank you. senator tillis, welcome back. senator tillis: if i seem out of breath, it's because i am. i had a conflicting committee assignment. i want to thank the chair in the raking number for their leadership. it's an important issue to me personally. because i have been a caregiver. so i just want let you know that we not only need to focus on the research, we also need to make sure that we have the right funding, madam chair. excuse me. to make sure that the caregivers , they have the resources and the education that they need to do the best job for caregiving. my personal experience, i was a grandson of a grandmother who got alzheimer's at a relatively early age. i wasn't quite sure what i needed to do to help my grandmother, i was pretty

certain that my mother and her two sisters were not doing it the right way. and other family members. that's why went back and took some college courses to actually better prepare me to help my mother and my two ounce -- aunts to be a better caregiver. i'm not going to ask you any questions, i will read the record. i wanted to communicate how important it is for something like this, another area where i have a lot of passion around autism. this is a classic example where i think the hand in the heart meet. because with the investment of resources we do the right fiscal thing but we do tremendous transformational impact for those who afflict you with alzheimer's. we need to invest, and we need to invest in the right research and identify some promising research that i read about this week for potential promising

treatments and make sure that we are putting those in the front burner. in a stately north carolina where over the next 10 years i will see the population of 65 years old and older go up about 30%, those suffering from alzheimer's in the state that's growing increasingly large asian population. we do make sure we educate our members here in the house and the 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 folks in purple, my daughter would love this, it's her favorite color. want to thank you all for being here in advocating, and i really encourage you to reach out and explain the transformational opportunity we have to make this a priority. thank you, madam chair. senator collins: thank you, senator, and well said. we are spending $226 billion as a society on a disease that's going to bankrupt our medicare medicaid programs, that if the

suffering of families doesn't move you the economics of it ought to move congress to do the investments that are necessary a were focused on caregivers is absolutely appropriate also. i want to thank our witnesses today for their extraordinary testimony, you should view has brought so much to the debate and discussion today, and i think you have given us some very comprehensive looks at a devastating disease. i want to assure you, as the cochair of the all-time worst 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 the focus on the disease that we are educating our colleagues, and that we are increasing the funding. we can't do it without your help

, and as i said, i have an amendment in going to ask your help on on the budget, to have essentially to get the senate on record for increasing the funding level that nih gets for alzheimer's research. i hope as you do your office visits that you will urge your senators to support that amendment, it's either going to come up its afternoon or tomorrow. you may not have time if it's this afternoon. my 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 fights against all timers. as we have said today, the color purple represents the alzheimer's movement, it is my

hope that someday soon, the color purple will also represents those who survived alzheimer's. [applause] senator collins: we will keep the hearing record open until friday, april 3. 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 today's hearing including my staff and senator mccaskill's staff, which is worked very hard and also 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 the national captioning institute, which is responsible for its caption content and accuracy. visit ncicap.org]

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the debate over defense spending the president's decision to stay in afghanistan through 2015. you can also join the conversation on facebook and twitter. ♪ host: good morning, everyone commodities thursday, march 26. from capitol hill, speaker john boehner finally scoring a win. approved a budget that would finally balance the budget. a series of votes could go late into the night. look for coverage of the senate on c-span2. first, we begin with the new