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tv   Alzheimers Disease - Part 2  CSPAN  July 9, 2018 2:34pm-4:04pm EDT

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thank you. we will resume. i want to welcome the co-sponsor
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and a leader in the fight against alzheimer's, senator catherine cortez masto, thank you so much for being with us. and senator jones, we're delighted to have you here as well. i'm delighted to introduce our first witness today, marcia gay harden. for those of you who follow popular culture well, she really needs no introduction. she is known for her roles in films such as "mystic river" d and "pollack" from which she won the academy award. she currently stars in the cbs medical drama, "code black." in her real life, ms. harden is
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also a mother a caregiver, and a strong advocate for alzheimer's disease awareness. last month, she published a personal memoir. i have a copy here. it is entitled "the seasons of my mother: a memoir of love, family, and flowers." in her book, ms. harden writes about her mother beverly's battle with alzheimer's disease, detailing the struggles, the small victories, and how their relationship evolved over time. today, ms. harden honors her mother's legacy in the way that all of us here honor our loved ones with alzheimer's disease, by keeping our memories of them alive and by fighting to find a cure for this devastating disease. next, i'm very pleased to
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introduce dr. lisa maguire, who leads the alzheimer's disease and healthy aging program at the centers for disease control and prevention. dr. mcguire has served at the cdc since 2004 and published more than 75 articles and book chapters on aspects of chronic health conditions, cognition disability, care giving, aging, you name it, she's written on it. i would now turn to my colleague, the ranking member, to introduce our witness from pennsylvania. >> thank you, madam chair. i'm pleased to introduce theresa osborne, the secretary of the pennsylvania department of aging. secretary osborne has dedicated her career to working with and advocating for older pennsylvanians. in her current position, she works to implement the pennsylvania state plan for alzheimer's disease and related disorders. earlier this month, her
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department announced the formation of pennsylvania's alzheimer's state plan task force and proud that pennsylvania is leading the charge with these initiatives and looking forward to secretary osborne's testimony. i'd also like to add, madam chair, we welcome a large contingent from pennsylvania, including phyllis gallagher from frackville, pennsylvania. phyllis testified in front of this committee last year and has been a tireless advocate for those living with alzheimer's and their caregivers in our home state, and we're pleased she could join us again today. >> thank you. i heard that there was actually a special bus that came down from your state. >> yes. >> so that's very impressive. but i want it known there are a lot of mainers out there too. next, i'm delighted to introduce one of my constituents, dr. gareth howell, an associate professor at the jackson laboratory in maine.
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dr. howell coleads the alzheimer's disease precision models center at the jackson lab, and that was established by a $25 million grant from the national institute of aging in partnership with -- and i'm looking at senator donnelley now -- the indiana university school of medicine. and i know that this is a terrific project of which he's proud as well. dr. howell has authored more than 55 publications and received numerous prestigious awards for his work. senator scott very much wanted to be here to introduce the final witness that we will hear from today, mrs. cheryl woods flowers from mt. pleasant, south carolina. ms. woods flowers served as a caregiver and a court-appointed
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conservator for her father when he was diagnosed with alzheimer's disease in 2004. she will tell us her father's story, her experiences in caring for him, and she has remained such an active advocate and resource for others. thank you for joining us as well. ms. harden, we'll start with you. >> thank you. thank you. i am honored to be here, and i am humbled to speak with so many, as we come to washington in hopes of tipping the scale. thank you, chairman collins, ranking member casey, and members of the committee for the opportunity to testify today on the impact alzheimer's disease has on my family and families across the country. as i look around me, i'm grateful to see so many people gathered in this room today, but a scary statistic tells us that one or more of us and certainly one or more of our children will develop alzheimer's disease. there's no known cure. the symptoms are devastating.
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and today, there are no survivors of alzheimer's. alzheimer's is an insidious, cowardly disease that needs all of our voices, the voices of families, of our elected officials, and the voices of our nation to galvanize and find a cure. it is my prayer that with your help, advocacy, and funding, this generation is able to celebrate the first survivor of alzheimer's. congress has worked in a wonderfully bipartisan manner to quadruple alzheimer's and dementia research funding at the national institutes of health since 2011 and continues to be deeply committed to providing the alzheimer's and dementia researchers with funding to move research forward. however, more needs to be done so we can discover the cause for alzheimer's and find a cure. every 65 seconds, someone in the united states develops alzheimer's and that number will nearly double by 2050. almost two-thirds of americans
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with alzheimer's are women. these numbers frustrate, sadden, and more importantly anger me and there is nothing more motivated than a pissed off woman. alzheimer's disease first came into my life in 2011 when my strong, witty, vibrant mother was diagnosed. let me tell you a little bit about my mom, beverly harden. she's one of the bravest women i've ever met. she raised five children while being stationed all over the world as my dad served our country as an officer in the united states navy. for months at a time, mom would be alone with five children to feed, bathe, teach, and love. while we were stationed in japan, she fell in love with the art of japanese flower arrangements and it kept her grounded and connected to the beauty of life through nature. in fact, mom went on to become the president of ikibana international's most distinguished chapter right here in washington, d.c., but she doesn't remember that. she accompanied me to the oscars in 2011. she doesn't remember that either. her beautiful husband passed
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away in 2002, and she doesn't remember that either. one of the first times i noticed my mom having memory problems was in 2005. we had boarded the plane and she couldn't remember where she just put her passport so she checked her purse. several minutes later, she forgot again and so checked once more. and again. and a third time. she became frantic, she was aware that something was wrong and that she shouldn't keep forgetting where her pass was but she didn't want my help. she wanted to string the moments together herself with no gaps. over time, those kind of moments became more frequent and in 2011, she was diagnosed with alzheimer's disease. as we all know too well, alzheimer's disease causes memories to evaporate. one minute, a person can recall the detail of their favorite novel, the function of a spoon or the fact that tulips bloom in the spring and the next home, it has disappeared. eventually the names and finally the faces of loved ones are also
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memories that have evaporated and soon the meaning of their lives evaporates. they are deprived of the validation of the memory of their lives. they don't remember who they were. they don't know who they are. as a family, we focus on her care and on maintaining her dignity. we've sold my mother's home in anticipation of the mounting cost of care giving and it infuriates me how alzheimer's becomes a stealthy thief, robbing families of their finances and security, and forcing its victims to live only in the moment. for my mother, there's only the present with no connection to her past, without the rich tapestry of her life to tell her story. there is no dimension, just dementia. i see her concentrate. i see her try to speak the right words. i see her try to connect the memory to words and through it all, i see her eyes smile, but it seems to me that the smile is just a little bit wounded these days. and we don't know what the
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future holds, and we're scared. will we eventually have to give up our own jobs to care for our mother? what will happen when the money runs out? as i watched my mom decline, i find myself worrying about my children or about me having alzheimer's and alzheimer's has changed me. but my mom always told me to repurpose my pain, to do something useful, so i've become an outspoken advocate. and the more i learn about the disease, the more motivated i am to make sure that people are educated about i. i partnered with the administration for community living for a nationwide campaign called what is brain health which aims to raise awareness while empowering older adults to make the most of their brains as they age with a particular emphasis on early detection and diagnose. early diagnosis allows people to participate in support services and if they choose to, very importantly, enroll in clinical trials. as scientists continue to search for a way to prevent, cure, or
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slow the progression of alzheimer's through medical research, public health can also play an important role in promoting brain health and cognitive function and reducing the risk of cognitive decline. it is imperative that we, as a country, invest in a nationwide alzheimer's public health response to achieve a higher quality of life for those living with the disease and their caregivers. and one of the ways that we can make that investment is through legislation introduced by you, chairman collins, and your colleague, senator cortez masto, called the b.o.l.d. or building our largest dementia infrastructure for alzheimer's act. it is endorsed by the alzheimer's association and the alzheimer's impact movement, and b.o.l.d. would create an alzheimer's public health infrastructure across the country to implement effective alzheimer's interventions and focus on important public health issues like increasing early detection and diagnosis and reducing risk. there is nothing good about alzheimer's. it's not a disease where one can
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make lemonade from lemons. and yet, through it all, my beautiful mother has managed to teach me even through the destruction of her capabilities in creativity, that there is such a thing as indestructible spirit, and it is because of this indestructible spirit i know she'd want to help others by raising awareness about this horrible disease. the battle against alzheimer's is a battle we must win. if we don't, it will cripple our nation. as my father would say, we must pull ourselves up by the boot straps. we must do our duty to the american people and fund and fight this battle and we will win. thank you for your time. >> thank you so much for your very moving testimony and your challenge to all of us.
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dr. mcguire. >> chairman collins, ranking member casey, and members of the committee, thank you for this opportunity to share cdc's efforts to address alzheimer's disease and related dementias. my name is dr. lisa mcguire and i lead the alzheimer's disease and healthy aging program at the centers for disease control and prevention. alzheimer's is the only top ten cause of death in america that can't be prevented, cured, or even slowed. an estimated 5.7 million americans of all ages are living with alzheimer's in 2018. by 2050, we expect that number to rise to 14 million people. alzheimer's disease places a significant emotional and financial burden on people with the disease, their families and caregivers, and the health care system. until we have a cure for alzheimer's, cdc and its public health partners play a critical
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role in helping those 5.7 million people and their families. we will work closely with state and local public health agencies by providing technical assistance, up to date scientific knowledge, cognitive decline and care giving data and promoting effective interventions to improve the health of americans with cognitive decline and their caregivers. not only are more people living with alzheimer's disease but alzheimer's disease related deaths have increased by 55% from 1999 to 2014. additionally, as people choose to age in place, one in four of those deaths of persons with alzheimer's now occurs at home. as these numbers increase, caregivers become even more critical. we know that nearly 1 in 4 adults report providing care to a family member or friend in the past year. while some aspects of care giving can be rewarding, caregivers for persons with alzheimer's disease often report higher levels of anxiety,
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depression, and poorer health outcomes than their peers. the needs of caregivers is a public health issue that cdc remains focused. first funded for funded for alz disease in 2005, cdc launched a healthy brain initiative, providing leadership in a number of national efforts. in 2007, we developed our first road map, the national public health road map to maintaining cognitive health. the alzheimer's association will release the third road map later this year in 2018, with an updated plan of 25 actions for state and local public health departments that are focused on accelerating the progress of risk reduction. early detection and diagnosis, safety and quality care of people living with cognitive impairment. perhaps the greatest
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accomplishment of the healthy brain initiative to date is the improved data collection. to measure the health burden of care giving in the united states, through the behave rior it is pivotal to address gaps in program delivering, monitoring and evaluation of progress in achieving health care goals. states and jurisdictions use these data, often the only available sources, to create awareness for the one in nine middle aged and older adults who reported their memory has worsened in the past year. cdc has state specific fact sheets and maintains a free and easy-to-use website where researchers and the public can view and utilize the data for their state.
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public health has a critical role to play in combatting the issue of alzheimer's disease and related dmen chaementidementia. cdc, with the support of congress and public health professionals across the country, will continue to draw on our expertise to continue to improve health, well-being, and independence of those with alzheimer's disease and their caregivers through our healthy brain initiative and the road map series. thank you for your focus on this critical public health issue and i look forward to your questions. >> thank you very much, doctor. and thank you for the work that the cdc is doing. now to learn more about the state perspective, i'm pleased to call on secretary osbourne. >> good afternoon. thank you, senator collins, and senator casey, for the opportunity to testify at this important hearing. as i sit before you today, i am
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in complete awe of each and every one of the over 1200 advocates, including the 50 pennsylvanians hailing from pennsylvania soil who gathered here today and has spent this past day courageously sharing their stories of love, devastation, and hope for a world without alzheimer's. as secretary of aging for the pennsylvania department of aging, i am humbled to join them as together we raise our voices for all of those impacted by alzheimer's. in my role, i have the honor of serving at the pleasure of governor tom wolf, who made it a priority that we in pennsylvania uphold the provisions of the older americans act, an act that calls us to serve as effective advocates for older americans, including the 3 million pennsylvanians who are 60 years of age or older.
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and in pennsylvania, we believe that the alzheimer's trajectory can be influenced and changed. pennsylvania's current infrastructure, anchored by our state plan on aging, which is required under the older americans act, and our state plan on alzheimer's and related disorders, is in perfect alignment with the committee's all right recognized need to invest in a public health response that will promote better care for those living with alzheimer's. while my written testimony outlines in great detail the first two points just mentioned, i will focus the remainder of my testimony on the need and opportunity before us to better leverage -- for the millions of americans and hundreds of thousands of pennsylvanians with alzheimer's or a related disorder. all told, 1 in 12 pennsylvania families are impacted by alzheimer's or a related disorder. moreover, nearly 675,000 pennsylvania caregivers are
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providing billions in paid care. we immediately pivot to land mark federal programs, enacted in 1965. medicare, medicaid, and the older americans act. and while medicare and medicaid began as basic health care programs, over the years, they have evolved. they now provide americans with improved quality and affordable health care coverage. but the older americans act was created by your predecessors in congress to bear the responsibility for community planning for aging programs, and to serve as a catalyst, a catalyst for improving the organization, coordination, and delivery of aging services in every state. for these past 53 years, the communities across the country, state units on aging, in partnership with their local agencies, through the provision
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of those older americans act services, help older americans, they help older americans remain healthy, they connect it with their communities, avoid hospitalizations, and defer all together or transition from nursing homes. older americans act services zli deliver programs that are low cost and high quality, accessing nutritional programs or attending adult day service programs. moreover, the act explicitly acknowledges the needs of families of older people and their care giving role, including serving caregivers of any age with alzheimer's disease. like many, if not all of you on this committee, every day i have the privilege to listen to concerned citizens who are either currently caregivers, who have been caregivers, who anticipate being a caregiver, or
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citizens who are receiving care or will need to care. because every one of us in this room will, in our lifetime, fit into one, if not all of those buckets. and just before the series i gathered with pennsylvania advocates, listening to their stories, stories that while individualized for individuals such as jim and phil and michelle and tom, but to the collective, their stories are compelling and they're challenging. they challenge me and hopefully all of us to use our forces for good, to move beyond the status quo, to do it better, and we need to do it better. we need to destigmatize alzheimer's and dementia. we need to better invest to meet the needs of individuals with alzheimer's and their caregivers, affording them to age in place in a sheetting of their choice, with the dignity
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and respect they deserve. by doing so, we will boldly transform the older americans act to being a small but important program to one that bends the cost curve on entitlement programs by providing community an cord, long-term services, and a more cost efficient care manner. so that regardless of zip code, we create the communities that better respond to and meet the needs of the most vulnerable among us. thank you for the opportunity to present this testimony. i like forward to any questions you may have. >> thank you very much for your testimony. [ applause ] it's a great pleasure for me to call upon dr. howell. >> thank you. good afternoon, chairman collins, and members of the committee. thank you for the invitation to be here today and for your work and support of alzheimer's and dementia research. my colleagues at indiana
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university also thank you for the continued support. we have recently established a research program that includes more than 40 scientists, led by myself and doctors gregory carter and christopher collins. we aim to identify genetic factors, and we also aim to understand how modified risk factors such as died contribute to a.d. this is incredibly challenging to identify the early stages of complex diseases in humans since they occur before any recognizable symptoms emerge. but this is where animal models come in. mice share 95% of their genes
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with humans. sadly, clinical trials for alzheimer's have not been successful. one reason is the lack of targeting early or presymptomatic stages. the other is the lack of models that reproduce human a.d. that's why i'm excited to be part of a collaboration between university of indiana and university of california irvine, established in the fall of 2016. and you'll be glad to know in a one-hour drive back from the airport, we renamed the sent tore model a.d., which is much more catchy. model a.d. aims to test at least five new compounds to cure alzheimer's disease. we are two years into this five-year project and have created more than 15 new models
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that are being assessed. as i show in the figure, using the same a.d. relevant measurements to determine whether an individual is developing a.d., this is a key advance that we've had in the field in the last few years. we have also established procedures by which new compounds can be tested on mice so patients can begin treatment earlier than possible. model a.d. is governed by the same open science policy such as the accelerating medicines partnership have been adhering too since their inception. all data will be made publicly available. also, also models are made widely available to the scientific community. while we wait for that cure, data show that changing lifestyles such as diet and physical activity is likely to reduce incidents of a.d. we have the next figure.
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to understand the contribution of modifiedfactors, genetics and other environmental stresses can be used to control the specific role of diet and physical activity on a.d. risks. work in my lab and others show regardless of the diet they consumed, mice exercised from young to middle or old age, remained cognitively normal. finally, a sometimes forgotten aspect is just like the human population, genetically distinct or diverse mice exist. however, most studies are focused on one mass strain that is related to mass memory loss. encouragingly, we now have data to show that just like the human
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population, this leads to memory loss in some but not all mouse strains. we are using that maps to determine the genetic factors that can be targeted as potential treatment for a.d. and related thdementia. in summary, in collaborations such as model a.d. are testing new strategies to prevent slow or treat alzheimer's disease. i express my thanks to the committee for this opportunity and its continued support. >> thank you very much. [ applause ] >> thank you for having me today. chairman collins and members of the committee, thank you for the opportunity to testify today about my experiences as a
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caregiver for my late dad. i hope my story will bring more awareness to this awful disease we all call alzheimer's. my father passed away in february, so y'all are going to have to forgive me for a minute. after living with alzheimer's for 16 years, when he was 18, my dad left his home in wisconsin to join the u.s. navy. that brought him to charleston, south carolina where he would meet and fall in love with my mom. and that story gets told a lot of times. my dad worked hard throughout his career in the navy, retiring in 1988. and then he started a successful woodworking business. he would be remembered for his love of dogs, people, his amazing christmas light displays and always his love for family, including sessiix children, 11 d children and 14 great grandchildren. before my dad was diagnosed with alzheimer's, it was not something that my family knew
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something about. 16 years is a long time. my mom started foe 'tnoticing tt my dad had trouble remembering where he left things. he was taking longer with errands. he was getting lost in a city he had lived in for 50 years, and kept forgetting things. in 2003, my parents took a trip to florida, which they had done many times before. dad left the hotel at 8:00 a.m. to get a tire fixed. at about 4:00 p.m. that day, my mom called us to let us know she couldn't find my dad. when we eventually -- when he was found, he had been crying, hadn't eaten all day, didn't have any money. it was truly an eye opening experience for my entire family. after that, we knew that something was indeed wrong and we had to get him help. we took him to a specialist at
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the university of south carolina where he was diagnosed with alzheimer's at age 70. very early in his disease, which was indeed a benefit for my dad and for us. every day we lost a little bit more of him, including the last five years, where my dad, who never met a stranger, didn't recognize any of us. anybody ever knew or even my mother that he was married to for 50 years. in a way, we were lucky that my dad was diagnosed so early with the disease. it gave us that time to talk to what we would do. we were able to make good decisions for him. we started some interventions. he started on medication, that helped him with the symptoms and gave him a better quality of life. we also learned ways to work around the best way for him to be cared for, and for him to
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have the best quality of life that he could. my sister and i were named as guardians, and we came his primary caregivers. he sold his house that he and my mom bought 55 years prior. thankly, they bought a home in a city with a great deal of appreciation. and that is what took care of him in a facility that was almost $6,000 per month. about three years ago, we got to the point when we put him there, and we found a great facility that was nearby us, but it didn't come, again, without a significant amount of experience. if he had not had that home, my parents raised six children on little money, and there was no savings to take care of him. i always believe it's never enough to sit around and just wait on somebody else to do something.
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about four years ago, i became an advocate with the alzheimer's association and have been participating in walks for alzheimer's, because i want to be part of the effort to eradicate this terrible monster of a disease. we must make the public and health care professionals aware of the early signs of alzheimer's disease. there needs to be a greater nationwide public health effort and infrastructure, in order to increase early detection and diagnosis. legislation like the b.o.l.d. for alzheimer's act would do that. it would increase education to the public, health care professionals, and public health officials on alzheimer's, brain health as well as collecting much needed data. investing in a nationwide alzheimer's public health response will help create a higher quality of life for those
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living with this disease, their caregivers, and reduce associated costs. the thing i found the most stressful in some of the facilities that we looked at, and if talking to some of my friends going through this is, we tend to think about treating the symptoms, forgetting these are people. and they enjoy the best quality of life they can while going through a disease that takes very, very long time. it is a long walk in most cases. the last few days, i have joined with 1200 of my closest friends, 1 to make our voices heard. i promised my dad that i would be his advocate and voice as long as i'm able to. i hope that my children and grandchildren would not have to think about these issues, because a cure could and should be found and hopefully in time
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for me to see that. and for my children to see that. as a caregiver and advocate, i'm respectfully asking congress to continue to make alzheimer's research a priority by increasing funding for alzheimer's research at nih, by an additional $425 million. as you help families get diagnosed early bypassing the b.o.l.d. infrastructure for alzheimer's act. thank you for listening to all of us, and to all that you have done, please continue to fight for everybody that is going through this disease. i appreciate it. >> thank you so much. [ applause ]
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>> thank you so much for your moving testimony. i can so relate what you're going through, having lost my own father to the disease on march 10th. and this was my first father's day, too. and it really is painful. and i'm going to end up like you if i keep talking about it. so i'm going to switch to questions and start with ms. harden. we talked a lot about statistics when it comes to this disease, and about the costs. but there's another cost that can't be measured in dollar signs. and that is the impact on the family when they get the diagnosis that a loved one has alzheimer's disease. and grief really starts at that point of diagnosis. i applause you forgiving voice
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to how you have coped with the emotional consequences of that diagnosis. are there any resources that you have found particularly helpful or any that you wish had existed when you first learned of your mother's diagnosis? >> that's a piercing question, and you're so right. the diagnosis of alzheimer's of a loved one, of a family member, of a parent who is supposed to be leading the way, forces the siblings to lead the way. and siblings usually don't agree much on anything, but especially what mom or dad would have wanted. what i found is it is a family disease and it tears the family part. they say it brings out the best or worst in the family. i think it brings out both. at the time, we only had the 36-hour book. that's what her doctor talked to
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us about. so we also had alzheimer's association, and they were helpful to us, but couldn't tell us how to mend the differences of the family, of what mom would have wanted. i wish we had had b.o.l.d. or something very specific to say this is what you turn to, this is where you understand resources and diet and all of the things we're learning about today. we became fractured to be honest. it's been a journey to pull my family back together. finances, we have no recourse for finances. when the finances run out, that's our question, what do we do then? how do we handle when the finances run out? so i think every little bit of awareness tips the scale. i keep thinking about ahow it
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tipped the scale until we find a cure. i would say i felt like i was on a sinking ship, and i feel like in this room, everyone in here has the same -- we're all on the same journey. and yet the ship -- there's a phrase "at crank" that means the bow is not balanced. i feel like we're here, pleading for you to balance the ship so we can continue safely. >> thank you. dr. howell, you mentioned in your testimony an issue that really matters to me, and that is when federal funding is being used, to me, we want to share the data, the results as broadly as possible. could you elaborate on what the lab does to spread the word
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about the research that you're conducting? and the new mouse models that you're developing? >> yeah, i can. >> much of the tat that we have already used have come from publicly available data, established by the nih. so as i mentioned, the accelerating and partnership for alzheimer's disease, all that data was publicly available. that helped us to get a jump-start on what mass models we were going to -- when we create new data, that data goes to the same place. it's all under the aim place. we also have other websites. we're using online resources and promoting our data and conferences and apparently we're
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tweeting and all sorts of things. we've lever raged that skillset and we can get these models to whoever wants to use them. particularly maybe pharmaceutical companies who have struggled in the past to get the latest mass models. so we're working closely with ely lily in indiana to make sure they want to use our new models and if they want to use them, they will also benefit from them. >> thank you. senator casey? >> thank you, madame chairwoman. i want to start with secretary osbourne. as i indicated earlier, with alzheimer's disease, it doesn't matter who you are, where you live, or what your back ground
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is. it affects every community and every family in some way or another. in our state, we've got a major part of our population, as well as land mass, that is considered rural. 48 of 67 counties are considered rural in pennsylvania. so we've got to make sure that no matter where a person lives, that they are access to the treatment they have and the support that they need. what can we do to make sure that individuals diagnosed with alzheimer's disease, who live in rural areas, say one of those 48 counties, that they have access to both services and supports? >> thank you, senator, for that question. it's one that we ask ourselves and our aging network and our partners every day. researcher also tell us that individuals living in rural areas that are diagnosed with
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alzheimer's disease or other related dmementiadementia, that already face great challenges. those challenges they create even more stress on caregivers. so for us, in order to help our rural communities, these public-private partnerships. it's been pointed out to me time and time again, even with the pennsylvania advocates i met with earlier today, this is a community issue. how are we best going to leverage our resources at the department of aging, the department of health, the department of human services and we are indeed working with local human service agencies, plus the hospital system. i could go on and on with regard to the need to constantly pivot back to better live rajing t le entrusted to our care. one of the easiest things we can do is to work with our partners
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by creating these dementia friendly communities. where any of us live, work, worship, play, the pharmacist, the groceries, each of us have a stake in this by ensuring that individuals with dementia are understood and able to contribute to their community and by working together with our partners, we can ensure that our communities are dementia friendly and we can look out for one another and ensure that the most important story in all of this to be told is the individual living with dementia. it was mentioned by many of my panelists here today, early keking to kek i -- connecting to resources. if we can getter connect individuals with those low-cost, quality services, we will bend that cost curve, so we're not relying on medicare and medicaid and higher cost of cares such as
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nursing home facilities. so frhow we connect to the national plan. so the communities across this country, regardless of zip code, that we have dementia friendly communities, that have resources available to help one another through this devastating disease. >> i know you've been to a lot of those communities, if not every one. in our state that have both substantial health care needs, as well as at least the potential for an access problem because of where they are. when it comes to caregivers, the remarkable, heroic work that they do. we have to make sure we're doing all we can to support them. many of the problems that you receive for the older americans
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act can help caregivers. can you tell the committee what the caregivers you speak to, what supports do they need and services that are most valuable to them? >> thanks, senator, for those questions. no different than you when you travel home on the weekends, inevitably somebody asks you a question with regard to, i need help with x, y, and z. it happens to all of us. to me just this past weekend, i had two friends who approached me with exactly what you just described. i need help with affording care. i don't know where to turn. my siblings won't help me. i need respite care. so how are we going to best ensure that individuals journeying with this disease, that we can connect them with local resources. the older americans act, they do support senior community centers that are safe harbors for
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individuals. by and harm, the most requested service that i get asked by caregivers is access to respite. they need a break themselves. whether it's for a couple of hours, a couple of days to go to a family reunion, just to go to dinner, just to take a shower. how do we connect them with that respite service and how can we truly break open the national family caregiver support program so that we don't have any barriers to ensuring that whatever that caregiver is identifying, that we can help them provide that service, without a list of barriers to assist them with that. so we're excited about the work that has been done to enable the aging network, but also across this country because of work
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this committee has advocated for with the family care program and we have a lot more work to do. as cheryl mentioned, public safety programs, if we had a federal stamp on a safety program that can ensure that first responders that they have the tools and technology that they need in order to aid them and safely reuniting a missing individual with their family, you know, just like an amber alert, we all know what that means, but it's not the same with individuals with alzheimer's in dementia who regret ltably get lost from famy members. so those programs are critical to be part of the infrastructure of how we can move forward to ensure we're meeting the needs of caregivers today. >> thank you very much. >> thank you. senator fisher. >> thank you, chairman collins, and ranking member casey for
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holding this important hearing. and for your leadership on this issue, and on the b.o.l.d. infrastructure for alzheimer's act. thank you both. i would like to thank the witnesses for being with us today and for sharing your personal experiences. the news when a family member or friend is diagnosed with alzheimer's rocks everyone in its wake. and as all of you know, that official news is one of the many steps in a very long journey. again, i would like to thank you for sharing your stories. this is a question for the entire panel. and we can go down the row if that would be helpful. what is it about the b.o.l.d. act that you find the most promising or essential as we continue to spread awareness and really we can work towards more of an understanding about this very evil disease? would you like to start, please? >> certainly. i don't know the specifics to
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exactly which part is better than the other. but what i know about it is it talks about early detection. we lost a huge window with my mother. we didn't have early detection. so we lost her voice in determining what she wanted for the rest of her life. and we didn't get to have that question. so the kids had to answer that question for her. and it's something i they have want my children to have to answer for me. so i've been an advocate for early detection. the other thing i loved, is that it unites the nation. and i think that's such a wonderful future to look to, that it unites the nation, as we care for ourselves as we age, that we have a plan. i want a man, i feel much safer with a plan.
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so i had a metaphor last night that senator collins is in a darkened tum with a torch saying here's the way out. so lighting the path for us. i think that's what we need, we need direction. >> thank you. doctor? >> thank you for that question. i can't comment on the specifics of the b.o.l.d. act, but states across the u.s. are poised to act and to help us with this public health crisis. and that b.o.l.d. act will allow for some national awareness to help states dig in and make a difference. >> thank you. secretary? >> i appreciate the question very much. i am probably one of the most hopeful people in the room, but hope is not a plan. when i heard of the b.o.l.d. act and the folks in the alzheimer's association and others who work with us, talk to me about the
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b.o.l.d. act. pennsylvania is already well positioned, as i briefly spoke about with regard to my verbal testimony. we are well positioned because of our current infrastructure. we have a state plan on aging, we have a state plan on alzheimer's disease and other related resources. we have plans. now how are we going to put those into action? it's because of the partners, alzheimer's advocates, they're ambassadors to ensure that together, all of us, will work toward that plan of b.o.l.d. in mar. our infrastructure also includes who nia funded research centers, one in philadelphia, the other at the university of pittsburgh. to have us in pennsylvania, we are excited about the opportunity to actually host an alzheimer's care center of
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excellence. we kneel we are leading the way with regard to all kinds of public health issues, and i mentioned earlier, when it comes to our opportunity to communicate and collaborate our efforts, the department of health and the department of human services, the department of insurance, the department of transportation, i could go on and on. but we need to work bert together. >> how are we going to use the resources entrusted to our care? whether they're resources that come from the federal government, or taxpayer dollars, whether the commonwealth of pennsylvania, 735% of our aging comes from the pennsylvania lottery. so hopefully everybody here will by a pennsylvania lottery ticket. got to may to win. with you that supports the work
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that we do. and that's why i really wanted to pivot my testimony towards the older americans act, which is not often the third pillar of the stool. and we have an opportunity to bend that cost curve by providing better services, low cost, high quality services, and the homes and communities of our older americans, we can go so much better. >> thank you, doctor. >> i think whenever i hear things like early diagnosis, i think what excites me as a researcher is the earlier we go the better. the more likely therapeutics will work. so as a researcher, this act would allow us to get at earlier and earlier stages of alzheimer's so we can understand in basic research and using them as a discover tool to then turn
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the question on its head. i think as an advocate with my friends from the main chapter of the alzheimer's association, there's a lot more understanding about advocacy and care, and that's what is exactly needed. >> thank you. >> the b.o.l.d. act, it comes home to me in a number of ways. in the late '80s, my first husband bass diagno was diagnos cancer. my biggest thing is, what is the plan? with cancer, that's lead oaid or you. it gives the family members and
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the person who is fighting the disease an understanding of what's going on. but they have more central control in exactly where their life is going. and with control, it decreases the amount of stress, and for somebody who has some sort of disease. one of the things that i learned that has really just taken the breath out of me at times is i've been involved with alzheimer's is the number of people who don't come under what we would normally call older. the people in their 40s and 50s, i mean, i'm just over 60, now the whole world knowis about it. and i don't consider myself older. but when we're seeing people in their 40s, 50s, and 60s, that should still be productive members of this society, that don't come under any act for older people, and they're given this diagnosis, we were thrown
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for a loop. just imagine what that does to your life when you still have children at home, when you still have huge responsibilities for care giving for your family. but also probably as productive members of society. 50% of the team that are living with this disease have yet to be diagnosed. this has got to be a public health issue. people that don't have access to facilities like the university of south carolina. i'm blessed to live there, because we had lots of resources, people that were willing to see my dad on a short term. this has got to be a public issue. a public health issue. we've got to establish centers of xe lens. so we look at brain health. as i've been told, the brain is
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probably one of the at least understood parts of the human bhod. that has to change, because it is impactling the ability of people to enjoy their lives the way they should. >> thank you. most of my family is faced with this terrible disease. >> thank you very much, senator. and thank you for your co-sponsorship of the b.o.l.d. act. senator cortez. >> thank you, chairwoman and ranking member for this hearing. thank you all. i think you pretty much said everything you need to get started on. but i think you touched on this. the idea that the b.o.l.d. act really sets the tone that this is a public health crisis, and we are creating an infrastructure that is necessary for that coordinated care plan
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that we've all been talking about today, that we can trap into an sure to address anything. iky that because i just came back from nevada, and we had a round train discussion, and i had a lot of my stake holders at the table to talk about one of the backs. now is time to coordinate and connect everybody together, because of what we just heard, and i am going to touch on this. one of the gaps we have is the doctors. not that they don't want to be there, but they're not trying to think about this. when you first come in, there's a detention to connect you with the services you need in our community. that is the number one thing i heard from the folks.
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then you brought in the first responders. this is a public health crisis. we have an sfrush where we can start the detection, and then start the help and assistant necessary for everybody to tap into. that's the key. that's what we're trying to achieve here. so i so appreciate the questions and the comments you had today.
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so can you tell me the health disparities that the cdc has discovered? >> thank you very much for that question. through our surveillance system, we are asking people to evaluate their own memory performance. and we also ask caregivers about their specific care giving situation. so we know one in nine americans report that their memory has worsened in the past year and we know one in four americans of caring for a loved one or family member. so we do notice tearty wise and higher numbers of individuals that are african-american that are reporting, also individuals that are his tannic, latino and alaska native. through our work, we are working with some tribal organizations to increase awareness in tribal
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communities and to think about risk reduction. we know that managing blood pressure in middle age can reduce dementia later on. >> thank you. is there anything that we have not talked about today? i'm going to open it up to the panel where you see gaps and other challenges that we should be focused on? >> i think there's gaps in teaching our young people about alzheimer's and how their diet and lack of exercise might be a precursor to ultimately the systems. i talk to my kids about it, but they're interested in it, and they're changing their own diets. i think i heard you say, doctor, that mice, no matter what they
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ate, did you say that if they were exercising, they weren't showing signs of dementia. so i thought that was a really fascinating bit of information. you apparently have to sweat if you exercise. i'll do it. but it needs to be done. so education for the youth, the young ones, elementary and middle school, they're eating lots of sugar. >> right, thank you. anyone else? >> so the challenge of exercise and diet is that under controlled conditions, a strain of mouse does not get the same degree of ageing in the brain as those that don't exercise. challenges in the human population, we know very little about how our genetics might interact, when i talk about my exercise research, somebody says my father was a marathon runner
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and developed alzheimer's at 60. sadly, it's not simply exercise and everybody will be fine. so what we can do is really understand how the genetics interacts with the environmental factors, such as exercise and diet. and in order to reduce risks. but i think it's important for sure as a population in society that it's going to help. can't predict who it's going to help, but it should reduce numbers or the instances of alzheimer's. so the more we can do to encourage our children and older to do some exercising and balance their life still, it's going to be important. >> thank you all. appreciate you being here. >> thank you very much, senator, for your leadership. senator warren? >> thank you, madame chair, for
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your leadership on alzheimer's disease. this is one of the toughest health challenges facing america today and i am blood to be a co-sponsor for the b.o.l.d. infrastructure for alzheimer's act, which you and senator cortez introduced to attack the problem of alzheimer's using a public health framework. i'm glad to be sitting in between you, also in purple. this bill is a critical step in the fight against alzheimer's and kocongress should pass it. this are a lot of things we need to do, increase funding for a z alzheimer's, yes. raise awareness, provide screening, provide better access, strengthen support for caregivers. it's a long, long list out there. today i just want to talk about one piece, and that is making sure that seniors with alzheimer's get safe, quality
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care wherever they are living. doctor, let me start with you. why is it important that alzheimer's patients, especially those in the early stages of the disease, receive high quality care? >> it's important to receive high quality of care because we know diagnosing alzheimer's disease and related dementia can help the patients and family better manage the health care. 95% of the people who do have dementia have another chronic health condition. it's important while the person does have alzheimer's that we continue to maintain and manage that condition, to prevent hospitalization. >> thank you. families do everything they can
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to get quality care and many turn to assisted living facilities to provide this car. around 40% of the 830,000 americans, living in assisted living facilities have alzheimer's and the numbers are only going to increase as our population ages. back in 2015, senators collins, hatch, mccaskill and i asked the government accountability office to look at how state and federal governments oversee the care provided to medicaid patients at assisted live tag silts. this year they got back to us with bad news. according to the gao, over half the states object adequate lat tra -- track the number of problems. more than a dozen states don't make this information available to the public.
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i know you lost your father to alzheimer's, i'm sorry for your loss, but you spoke about how you worked with your cyst tore manage your father's care and how you chose to place him in an assisted living facility. in considering options for your father, was it important to you that the services he received were high quality and safe? >> absolutely. we visited probably six different facilities, and we were looking for things, we wanted to make sure the facility was clean and well staffed. at that time we didn't understand what well staffing is. and that included activities. social, otherwise, so that his quality of life would be as good as it could be. we knew that he was not going to learn anything knew, but we wanted his brain challenged some
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part of the day, that we didn't want him sitting in a chair all day waiting between meals, waiting for one meal to the next. what we found -- the facility we found, it was clean and he was -- he did have some activities until the last year when he was unable to participate in those things. the biggest challenge that we saw was that the staff is not trained to deal with alzheimer's patients. they would be dine in assisted living and in a skilled nursing facility. they do not understand, and we can't find any law that says they have to be trained in any way, to deal with an alzheimer's patient. they have different needs than somebody in assisted living and in skilled nursing. my father would not eat. he would not pick up any -- it was a sandwich, he was not picking it up. so we made as many every single
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day, every single week, so he can get things that he would pick up with a fork or a spoon, because he was not going to pick up that sandwich and not going to pick up a piece of pizza or anything. those are very distinct things for alzheimer's patients. and they do not have that training. >> so i very much appreciate the point that you're making and sharing your experiences here. families are doing their part, and i believe congress needs to step up and ensure that we collect data on where these health and safety violations occur. make sure that you have enough information up front to make a decision about the facility you want to choose for your father and know what kind of care and training that people have there. i'm working on legislation to fix this problem. i hope we can work together on it in this committee. i think it's important. i understand the fight against
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alzheimer's is a fight for caregivers, patients, families, communities, and it is an honor to be here with you in this fight. >> thank you, senator. the very patient senator jones. >> you have to be patient when you're number 99. [ laughter ] thank you, madame chairman, and ranking member, and for all the sea of purple that i'm seeing, thank you for all that you're doing. i always appreciate somebody from south carolina who can be a witness without an accent. this is important to so many of us. it all hits us personally. my best friend's dad, who was my second dad, died a number of years ago. i watched him go down. and then a few years ago, it hit
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my dad. and he was a navy man, as well. and is in assisted living now. dad was the strongest man i've ever known. short in stature, but like a rock in his physical stature as well as integrity and character. and it is, you know, a very sad father's day. he is still alive, but to see him in the state he's in, because it affected not just his cognitive, but he has other neurologicals. i walked him into the hospital a couple of years ago, and he's never walked again. it's especially difficult on my mom. she can't -- i don't say she's a care giver in the sense that she's working and constantly doing things. he's in the assisted living facility next door, but visits him about every day, and just to see the man she's lived with for almost 69 years, after a two-week navy courtship, first
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date on wednesday, engagement on sunday and two weeks later marriage and 69 years later, she visits him every day. the emotional toll for her is extraordinary. i deal with it every day when i try to call back home and talk to her. so this is important to all of us, and it's why i am happy, the b.o.l.d. act was introduced before i got here, but i'm happy to add my name as a co-sponsor. >> thank you so much. [ applause ] >> my question is a little more practical and a little more personal, given my age. we talk about early detection. but where is the tipping point where someone should recognize maybe i need to see someone about my memory? we all lose our keys, we age,
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we're going to have memory issues. how do we recognize, how do we talk to people, what it's through ledge ligs gislation or education process, where is the tipping point to see a doctor and say, maybe i need to look at this? i think dr. howell, secretary osbourne, maybe you two are the best, but maybe dr. maguire, you can chime in, too. just anybody. >> that's a tough question. through education that we have been doing with the alzheimer's association in maine, the ten ways of recognizing it, there's no single way to say okay, here's the tipping point. losing your keys but finding them again is not too much of a worry. that should be fine. repetitive behavior people talk about, forgetting they have said something or done something very recently. for early diagnosis, it's really
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important to diagnose prior to any ksigns of memory loss. by the time significant memory close loss is recognizable in an and so when we think about early diagnosis in our animal studies, we think more about, you know, way before cognitive decline or changes. we think of things like the blood, changes in the blood. blood test for high risk for alzheimer's is something that we're all working on. another lthing is a retina exam. we're beginning to explore the potential for early diagnosis by something other than kog any co change that's are important for all the reasons that have been suggested in terms of saving money. but in terms of treatments, you want to consider treatments before cognitive tests.
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>> you want to add anything to that? >> sure. i appreciate that. you know, in part of the comments that i rendered, i talked about the destigmatization of alzheimer's disease. like many in the room, i had a family member recently that we were intervening actually, we realized that things were getting a little bit out of control for him and his wife married 64 years. he said to me he was embarrassed to tell anybody the signs that his wife was having. very humble. they had a little card shop that they ran in the scranton area and they knew a lot of folks in the community. he didn't want people to know what he was dealing with on a daily basis. so even for him to talk to us about, you know, how do i not be embarrassed, that i'm seeing these signs but who do i go to? he didn't have a diagnosis. his physician never shared with him, your wife has alzheimer's. it's memory loss. it's this. how do we get to that early detection, that detection at all, connecting them with services and that they're not
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afraid of talking about it. one friend of mine that runs an assisted living community. i appreciate them very much. in the facilities every day we have caregivers helping caregivers who are dealing with the challenges the families are facing where they're exhausted, frustrated, guilt ridden, they are worried about how they're going to pay for that level of care, what happens after the money runs out. and they all point back to the minute that they're rendered that diagnosis and hear it for the first time, that the response is usually a pretty palpable silence. that there is such a stigma attached to oh, my god this happened to me and my family. so the more we can talk to folks within our communities about how to not be embarrassed, about how to look for the signs, i love the program that was mentioned earlier with the administration for community living. you know, how do we ensure we're doing that in all 50 states and every community within the 50
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states? that's what's so exciting. to get that infrastructure in place that we are better he could ordcoordinating and make shurg that services, supports, programs are in the hands of the americans who need them. >> all right. thank you, doctor. you want to say real quick? >> yeah. centers for disease control prevention data, we know approximately half of people who are experiencing changes in their memory that's worse than the past year are actually talking to their health care providers. people have mentioned stigma and awareness. we do need to reduce the stigma. we need to make people know it's okay to talk with their health care provider and just because you're experiencing memory loss or declines in your memory doesn't mean you have alzheimer's. you need to see a health care provider to get your symptoms checked out, to rule out any possible treatable conditions that may be causing the symptoms and the medicare annual wellness visit does cover cognitive
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screening and assessment. there are ways to get their cognitive screening done. we have a lot of work to do together to move this forward. >> i have a thought. i don't have to show any signs of breast cancer to get a mammogram. so maybe there is no tipping point. maybe it becomes something so common that we test for it before. >> there you go. >> excellent. >> thank you. thank you for the panelists. thank you, madam chairman, for calling this hearing. i appreciate it very much. >> thank you very much, senator. before you have to leave, i want to give an update on the number of co-sponsors because due to the efforts of this group and your joining us, we now have a total of 40 co-sponsors including me.
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and just today in addition to picking up senator jones, we picked up senator donnelly, senator gillibrand and senator bennett. just so those of you who are from those states know that it counted. i want to thank all of our witnesses here today for your testimony. you have really made a difference in coming forward and helping us to better understand the personal and the economic toll of this devastating disease. the hope that we all can have as we embrace a new approach, the public health approach, the research that is going on, the collaboration that secretary osborne referred to so often and it gives me hope that as we
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continue to work on this, we're going to see effective treatments, means of a prevention and some day a cure. it will be because of the work, the passion, the energy each of you have been touched by this disease. and sharing your views, your experiences, whether it's a caregiver or as someone who has been affected more directly, actually caregivers are very directly affected as i know, there are no two stories that are alike. but each case of alzheimer's disease causes a ripple effect through the entire family and
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through our communities. and that's why we need a new public health approach. that approach is a bold one-and-one that will help us move forward. last night at your wonderful dinner which was so inspiring, one of the advocates put it best when she said let's make alzheimer's disease a memory. i thought that was a wonderful way to put it. i'm stealing that line from now on. when i speak about alzheimer's disease and the work i'm doing, that's the way i will end my speeches. i do want to take a moment today to thank my staff which has worked so hard and senator
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casey's staff as well. and to acknowledge and thank dr. melissa bachelor-murphy. melissa served for the past six months as health and aging policy fellow on our aging committee staff. she came to us from the duke school of nursing and brought with her expertise in geriatrics and specifically dementia care. so this marks melissa's last hearing with us. and now she's going to go back into academia. but she told me that we can still call her often. so melissa, thank you very much for all of your work. and we value all of your contributions. senator jones? >> just a moment.
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let me thank you for the incredible work and dedication not just for the hearings but for the work you do. i really appreciate that. and your staff and senator casey's staff. and all of you here, not just our witnesses, but to everyone here, not just for the work you do but for raising the awareness. because that is just so important. it's great to research. it's great to deal with people every day. but raising the awareness is so important for folks to try to deal with this disease and make it a memory. and you're having an effect. i can tell you on a personal level on father's day this year, my family gave me a new gym bag and athletic shoes and everything to encourage me to do those kind of things that i need to be doing. as the population ages, the number of people dealing with this disease are only going to grow unless we do something. we have to do everything we can to advance research and to
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treatment and prepare our communities and health systems to meet the challenges of the future. and i am looking forward to being on this bill, to continuing to work with colleagues in the senate on a really -- this is a bipartisan effort. this has no political stripes whatsoever to keep up the fight. i encourage everyone here to keep up the fight as well. thank you madam chairman. >> thank you. >> thank you very much, senator. let me end this hearing by thanking the alzheimers association for all of your work and for encouraging all of these advocates to come to washington. my thanks to each and every one of you. committee members will have until friday june 29th to submit questions for the record so there may be a few more questions coming your way. this concludes our hearing.
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thank you so much for being here. coming up on c-span 3, the
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president the dosouth baptist session. then jeff sessions speaks about religious freedom followed by a discussion to combat crime and violence in el salvador as a way to reduce illegal immigration in the u.s. and at 8:00 eastern, a look at the future of jobs, training and wages in america. the former head of the fbi's chief of counter espionage intersection peter strzok goes before congress to explain fbi and doj actions surrounding the 2016 presidential election and the clinton e-mail investigation. mr. strazok led the investigation into hillary clinton's use into a private e-mail server. coverage begins 10:00 a.m. eastern here on c-span3 and listen with the free c-span radio app. >> president donald trump will
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announce his nominee for the supreme court filling the vacancy left by retiring justice anthony kennedy. watch the announcement live tonight at 9:00 p.m. eastern on c-span and or listen on the free c-span radio app. >> what a pleasure and honor it is to introduce russell moore as this year's lecturer. dr. moore is the eighth president of the ethics and religious liberty commission of the southern baptist convention which is the moral and public policy agency of the nation's largest protestant


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