    [Senate Hearing 115-113]
    [From the U.S. Government Publishing Office]

                                                            S. Hrg. 115-113

                    THE ARC OF ALZHEIMER'S: FROM PREVENTING
                       COGNITIVE DECLINE IN AMERICANS TO
                        ASSURING QUALITY CARE FOR THOSE
                            LIVING WITH THE DISEASE

    =======================================================================

                                    HEARING

                                   BEFORE THE

                           SPECIAL COMMITTEE ON AGING

                              UNITED STATES SENATE

                         ONE HUNDRED FIFTEENTH CONGRESS

                                 FIRST SESSION

                                   __________

                                 WASHINGTON, DC

                                   __________

                           WEDNESDAY, MARCH 29, 2017

                                   __________

                                Serial No. 115-3

             Printed for the use of the Special Committee on Aging

     [GRAPHIC NOT AVAILABLE IN TIFF FORMAT]

             Available via the World Wide Web: http://www.fdsys.gov
                           SPECIAL COMMITTEE ON AGING

                                   __________

                        U.S. GOVERNMENT PUBLISHING OFFICE
    26-890 PDF                  WASHINGTON : 2017

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                       SUSAN M. COLLINS, Maine, Chairman

    ORRIN G. HATCH, Utah                 ROBERT P. CASEY, JR., Pennsylvania
    JEFF FLAKE, Arizona                  BILL NELSON, Florida
    TIM SCOTT, South Carolina            SHELDON WHITEHOUSE, Rhode Island
    THOM TILLIS, North Carolina          KIRSTEN E. GILLIBRAND, New York
    BOB CORKER, Tennessee                RICHARD BLUMENTHAL, Connecticut
    RICHARD BURR, North Carolina         JOE DONNELLY, Indiana
    MARCO RUBIO, Florida                 ELIZABETH WARREN, Massachusetts
    DEB FISCHER, Nebraska                CATHERINE CORTEZ MASTO, Nevada
                                  ----------
                     Kevin Kelley, Majority Staff Director
                      Kate Mevis, Minority Staff Director

                                    CONTENTS

                                  ----------

                                                                       Page

    Opening Statement of Chairman Susan M. Collins...................     1
    Statement of Ranking Member Robert P. Casey, Jr..................     3

                               PANEL OF WITNESSES

    Maria Shriver, Mother, Journalist and Founder of The Women's
      Alzheimer's Movement, Los Angeles, California..................     6
    Kristine Yaffe, M.D., Scola Endowed Chair and Vice Chair,
      Professor, Department of Psychiatry, Neurology, Epidemiology,
      Weill Institute of Neurosciences, University of California, San
      Francisco, and Chief, Neuropsychiatry, San Francisco, VA
      Medical Center, San Francisco, California......................    26
    Christopher M. Callahan, M.D., Director, Indiana University
      Center for Aging Research and Investigator, Regenstrief
      Institute, Inc., Indianapolis, Indiana.........................    28
    Phyllis Gallagher, Family Caregiver, Frackville, Pennsylvania....    30

                                    APPENDIX
                          Prepared Witness Statements

    Maria Shriver, Mother, Journalist and Founder of The Women's
      Alzheimer's Movement, Los Angeles, California..................    44
    Kristine Yaffe, M.D., Scola Endowed Chair and Vice Chair,
      Professor, Department of Psychiatry, Neurology, Epidemiology,
      Weill Institute of Neurosciences, University of California, San
      Francisco, and Chief, Neuropsychiatry, San Francisco, VA
      Medical Center, San Francisco, California......................    47
    Christopher M. Callahan, M.D., Director, Indiana University
      Center for Aging Research and Investigator, Regenstrief
      Institute, Inc., Indianapolis, Indiana.........................    51
    Phyllis Gallagher, Family Caregiver, Frackville, Pennsylvania....    60

                      Additional Statements for the Record

    Alzheimer's Foundation of America, Testimony.....................    64

                          THE ARC OF ALZHEIMER'S: FROM PREVENTING
                          COGNITIVE DECLINE IN AMERICANS TO ASSURING
                          QUALITY CARE FOR THOSE LIVING WITH THE DISEASE

                                  ----------

                           WEDNESDAY, MARCH 29, 2017

                                           U.S. Senate,
                                    Special Committee on Aging,
                                                        Washington, DC.
        The Committee met, pursuant to notice, at 2:36 p.m., in
    Room SD-106, Dirksen Senate Office Building, Hon. Susan M.
    Collins, Chairman of the Committee, presiding.
        Present: Senators Collins, Tillis, Fischer, Casey,
    Gillibrand, Blumenthal, Donnelly, Warren, and Cortez Masto.

        OPENING STATEMENT OF SENATOR SUSAN M. COLLINS, CHAIRMAN

        The Chairman. This hearing will come to order.
        First of all, thank you all for that wonderful welcome,
    which I know was for Maria Shriver, but----
        [Laughter.]
        The Chairman. But we Senators will pretend that it was also
    for us.
        [Applause.]
        The Chairman. Good afternoon to all of you. I am delighted
    to convene this annual hearing to assess the arc of
    Alzheimer's, from preventing cognitive decline to assuring
    quality care for those living with dementia. It is always so
    inspiring to sit here and look out at that sea of purple. But
    it is also a reminder that this terrible disease has affected
    each and every one of you in a personal way.
        Over the years, I have met family members who have
    sacrificed so much to care for their loved ones living with
    this disease. I have met Americans living with Alzheimer's with
    courage and determination. Many of you are here today, and we
    welcome you.
        Two years ago, I met Bob O'Keefe from Waterboro, Maine.
    Alzheimer's ran in Bob's family. His father and older brother
    both had it, so Bob decided to get tested early. He received
    his diagnosis in 2009, and immediately he became a fighter. He
    walks daily and reads a couple of books a week. He organizes
    support groups in his small rural community. He told me,
    ``There are days that are overwhelming. But,'' he stressed,
    ``never quit. Every day is a new day.''
        Today we should ask, What can we do to help people like
    Bob? Given our rapidly aging population, we cannot afford to do
    nothing. Alzheimer's is a devastating disease that exacts a
    tremendous personal and economic toll on individuals, families,
    and our health care system. Approximately 5.5 million Americans
    are living with the disease, including 27,000 in my State of
    Maine. That number is soaring as our overall population grows
    older and lives longer. If current trends continue, Alzheimer's
    could affect as many as 14 million Americans by the year 2050.
        In addition to the human suffering it costs, Alzheimer's is
    our Nation's costliest disease. The United States spends more
    than $259 billion per year, including $175 billion in costs to
    the Medicare and Medicaid programs. It is the only one of our
    Nation's most deadly diseases without an effective means of
    prevention, treatment, or a cure. If we do nothing, the
    Alzheimer's Association forecasts that this disease will cost
    our country an astonishing $1.1 trillion by 2050, and it will
    bankrupt the Medicaid and Medicare programs.
        Now, the good news is that we are making progress. In 2011,
    the National Alzheimer's Project Act, known as ``NAPA,'' which
    I co-authored with then Senator Evan Bayh, became law. It
    created a national plan to combat Alzheimer's that is updated
    annually. NAPA focuses our efforts to accelerate progress
    toward better treatments and means of prevention and ultimately
    a cure.
        In the biomedical world of research, we are also making
    progress. Scientists are conducting prevention clinical trials
    that never would have been possible even a few years ago. And I
    have had the great privilege of visiting with some of the
    research scientists who are on the cutting edge of doing
    clinical trials and laboratory work, and it is exciting.
        In fact, Senator Casey, I went to the University of
    Pennsylvania which is doing tremendous work, and I am proud of
    the work that Jackson Laboratories in my State is doing, and
    Harvard, and the list goes on and on.
        Today through advances in imaging technologies, we are able
    to identify some of those who are most at risk for Alzheimer's
    and test interventions before symptoms develop.
        Although we do not yet know how to prevent Alzheimer's, we
    are advancing in our understanding of the disease. Its
    progression does not happen overnight. It is preceded by years
    and perhaps even decades of changes in the brain and a
    continuum of changes in behavior, including cognitive decline.
        A growing body of evidence even suggests that lifestyle
    factors could decrease the risk of cognitive decline. Today we
    will learn about the state of the research on factors such as
    cardiovascular risk, physical activity, diet, sleep, social
    engagement, and cognitive training. If we start today, a public
    health approach to improve brain health may well be possible.
        For those living with the disease today, and given the
    rising projections for the future, we need to ask: Are we
    equipped to provide the best care across various settings, from
    homes to hospitals? We know that the number of geriatricians
    falls short of the growing demand. We know that for those
    living in rural areas, such as in my State, that respite care
    is far too scarce. We will discuss innovative approaches to
    delivering dementia training to help care providers across the
    spectrum, from primary care physicians and nurses to social
    workers and community health workers, and family caregivers are
    especially important as part of this picture.
        Last year, more than 15 million Americans provided 18
    billion hours of unpaid care to family members and friends with
    Alzheimer's disease. This is valued at more than $230 billion.
    We will shine a light on how to better support these efforts.
        When I look at the arc of Alzheimer's, I recognize both the
    progress we have made and how far we still have to go. We have
    come a long ways in advancing research through more robust
    funding. Last Congress, we increased funding for Alzheimer's
    research by 60 percent to almost $1 billion. The fiscal year
    2017 appropriations bill, as reported by the Appropriations
    Committee on which I serve, would take us to nearly $1.4
    billion.
        Now, why are those figures important? Well, the experts
    have calculated that we need to invest $2 billion a year in
    research funding to achieve our goals.
        We certainly cannot afford to go backwards at a time of
    such great urgency and progress, and that is why I so strongly
    oppose the administration's plan to slash funding for the
    National Institutes of Health. That is the last thing we should
    do.
        [Applause.]
        The Chairman. I want to thank all of our witnesses for
    joining us today, and I especially want to thank each and every
    one of you who have traveled from your home States to be with
    us. Some of you remember from last year that I wore this same
    purple suit because it is the color that we are all using
    today. This suit is like 15 years old, and I really want to
    retire it. But I have made this pledge that until we have an
    effective treatment, this suit stays in my closet.
        [Applause.]
        The Chairman. Senator Casey, I am delighted to recognize
    you for your opening statement.

      OPENING STATEMENT OF SENATOR ROBERT P. CASEY, JR., RANKING
                                 MEMBER

        Senator Casey. Chairman Collins, thank you very much, and
    thank you for saying some things that elicited applause. That
    does not happen very much in hearings.
        [Laughter.]
        Senator Casey. So we are grateful. But I do want to thank
    you for calling this hearing and for your dedication on this
    issue. It is a topic that I think touches everyone in this room
    in one way or another, some more directly, obviously, when it
    is a family member. But whether it is a parent or a
    grandparent, a sibling or a friend, or even a neighbor, you
    know what this fight is all about.
        Our witnesses, who are in that fight as well, come to us
    today from all across the country. A little bit later I will
    have an opportunity to introduce Phyllis Gallagher from
    Frackville, Pennsylvania, not far from my home town of
    Scranton, and we appreciate her being here today. Phyllis cares
    for her husband, John, who began showing signs of early onset
    Alzheimer's at the age of just 49, and we are grateful that she
    is willing to do that today to provide that testimony.
        It is also an honor, of course, to have Maria Shriver here
    with us today to help raise awareness about the issues that
    families across our country face in families like hers and like
    the Gallagher family.
        Alzheimer's disease severely impacts both the lives of
    those who are diagnosed with it and the lives of those who care
    for them. Just consider this: Just in one State, Pennsylvania,
    270,000 people ages 65 and older currently live with
    Alzheimer's. Providing much of the care for these individuals
    is an enormous but often unseen army of caregivers, including
    friends, family, and neighbors, just as Senator Collins alluded
    to earlier. In my home State of Pennsylvania, an estimated
    673,000 people provided unpaid care to a person with
    Alzheimer's-related dementia in 2016 alone. So 270,000 people
    living with Alzheimer's, 673,000 providing assistance. So those
    numbers will only grow, not only in a State like ours but in
    States across the country.
        So that is why we are here today, to talk about how we can
    slow down this disease and ensure that those who develop the
    disease itself receive the best medical care and the best
    support possible. Scientific research is providing us with new
    insights into how we can better control the impacts of
    Alzheimer's disease.
        For example, we are discovering that physical activity can
    prepare our brains to fight back against Alzheimer's and to
    potentially delay the onset of symptoms. Increasingly, we are
    hearing the experts tell us, ``What is good for your heart is
    good for your brain.'' We must continue to support research in
    the quest for interventions that can help us prevent the onset
    of the disease and one day develop the cure.
        Until that time, we must focus on making sure that those
    who are already living with the disease can get the best care
    possible. This requires that we have a health care workforce
    properly trained to address the unique needs of individuals
    with dementia. This must include care providers across a
    continuum of care, from primary care providers to nurse
    practitioners to, of course, direct care workers.
        We must also increase the number of doctors specializing in
    health issues that affect older Americans more broadly. Someone
    living in an apartment building in Philadelphia or on a farm in
    Washington County, Pennsylvania, must both have access to care
    when they need it. All of this will not be enough, though, if
    we do not also engage the largest component of our caregiving
    workforce--our family caregivers, as Senator Collins reminded
    us. Caring for a loved one is emotionally, physically, and
    financially draining. We know that. We also know that family
    caregivers require our support and need to be provided with the
    resources they need to properly care for both their loved ones
    and themselves.
        As the experts tell us, we have made progress in all of
    these areas: research, workforce, and caregiving. But our work
    is far from over, and in some cases, it is just beginning. We
    know, as Senator Collins just told us, funding is critical, and
    I join her in that disagreement, I will add even denunciation
    or condemnation, of any budget proposal that cuts NIH the way
    that the budget proposal does. For too long----
        [Applause.]
        Senator Casey. For too long, we have not made progress on
    funding. Last year, we had a breakthrough. Our great bipartisan
    moment--which guaranteed it did not get a lot of coverage but
    it was a great moment.
        [Laughter.]
        Senator Casey. And at that time, we moved in the right
    direction in terms of funding NIH. This budget idea would be--
    or proposal, I should say, would be a giant step backward, or
    more than one step.
        So I am pleased to join her in that effort, and I am also
    committed to helping us get to the point where we are getting
    closer and closer to the $2 billion funding targets that
    experts tell us that we need.
        Over the past several years, with the help of so many
    people in this room, we have made real progress in funding, but
    we have got a long way to go.
        Let me just wrap up with this one message. In addition to
    focusing on these priorities, we have got to make sure that
    this stays in front of the American people on a regular basis
    and the leaders here in the Senate and the House. We cannot
    look at the faces in this audience, people who have come here
    year after year, and the pain and the heartache that so many
    have suffered with regard to this terrible disease and not
    insist that more has to be done. We need to keep investing in
    science, keep supporting clinical trials, and keep supporting
    families. That is why this gathering today is so essential for
    patients and for families.
        Let me just conclude as well with a reference to two
    programs that I think are critical to this: Medicaid and
    Medicare. We had an effort that was undertaken most recently
    which, in my judgment, would have hurt Medicaid terribly. We
    have to make sure that we stop efforts that are headed in that
    direction. We have got to step up the fight against
    Alzheimer's, if anything, increase the pace and the intensity
    that we bring to this issue.
        I am grateful that you are all here on this day. We are
    grateful for your continuing commitment, and I am grateful for
    the witnesses' testimony, as well as our Chair getting us
    together today.
        Thank you, Chairman Collins.
        [Applause.]
        The Chairman. Thank you very much.
        I want to acknowledge the presence of many of my colleagues
    who are here today: Senator Fischer, Senator Tillis, Senator
    Gillibrand, and I know Senator Warren is going to be back as
    well. And I suspect we will be joined by others.
        I am now delighted to introduce our first witness, Maria
    Shriver. Ms. Shriver is a journalist and the founder of the
    Women's Alzheimer's Movement. Ms. Shriver is a champion in
    fighting Alzheimer's disease. She founded the Women's
    Alzheimer's Movement to advance research and to find out why
    two out of three brains that develop this disease belong to
    women. She has kicked off the Move for Minds, a partnership to
    raise money for research and raise awareness about lifestyle
    changes that one can make to promote brain health.
        Ms. Shriver, I so remember your previous testimony here. In
    2009, you testified so poignantly about the story of your
    father, and I will never forget you telling me that when he
    could no longer remember the names of his loved ones, he could
    still recite the ``Hail Mary.'' And that was just such a
    poignant moment in your testimony.
        I also want to acknowledge that your daughter Christina is
    here today, and we are delighted to have her as well.
        Thank you for all your work, and please proceed with your
    testimony.

    STATEMENT OF MARIA SHRIVER, MOTHER, JOURNALIST, AND FOUNDER OF
       THE WOMEN'S ALZHEIMER'S MOVEMENT, LOS ANGELES, CALIFORNIA

        Ms. Shriver. Well, good afternoon, and thank you, Chairman
    Collins, Ranking Member Casey, and members of the Committee for
    inviting me here today. It is an honor to be here with so many
    extraordinary people. Every single person behind me could
    actually be testifying and tell an incredible story, so I am
    honored to be here speaking on behalf of all of these
    incredible people.
        As Chairman Collins mentioned and as some of you may know,
    I have been here before, 8 years ago, to be exact. In March of
    2009, I sat here and testified about how Alzheimer's had taken
    up residence in what had been my father's beautiful brain.
        My father, Sargent Shriver, was an idealistic, intelligent,
    optimistic, and dedicated public servant. His mind was as sharp
    as they come--a beautifully tuned instrument that left people
    in awe and inspired. He was an expert at sharing his passions
    with the general public, with thought leaders, and with people
    like yourself. He often came here to the Hill to advocate for
    increased funding for his beloved Peace Corps and all the War
    On Poverty programs that he created, including Head Start,
    Vista, Job Corps, and Legal Services for the Poor.
        He loved working this building, and he was really good at
    it. He knew every Senator and Congressman by name. And if he
    were here today, he would know every single thing about each
    and every one of you--about your careers, about your interests,
    your politics, your families, and, yes, your soft spots. He
    would know a lot about that.
        So imagine how painful it was to watch when this walking
    encyclopedia of a man went from knowing every fact about
    everything that had ever happened in the history of this
    country to not knowing what a spoon or a fork was, to not
    knowing what my name was, or not knowing his own name.
        Two years after I testified, my father died of Alzheimer's
    disease, and now I am back--back again to testify, back again
    to sound a 911 alarm about the biggest biomedical crisis facing
    the world today--and I say that it is a world crisis--back
    again to focus your brains on this killer ravaging brains and
    families across this great country of ours.
        Believe me, I wish I did not have to come back here to
    testify. It was not on my calendar. But when I learned that the
    funding for NIH and Alzheimer's research might be in jeopardy,
    I practically ran here to say, ``This just cannot be. Wait a
    minute. There must be some mistake here.''
        I know that this Committee is well aware of this crisis
    unfolding in homes across this country. I know you know about
    it firsthand, and I know you know about it from the people that
    you represent. But let me use this moment to remind you here on
    the Committee and the American public just what the up-to-date
    facts really are. And trust me, these are real facts.
        Every 66 seconds, another brain will develop Alzheimer's
    disease, and two-thirds of those brains belong to women--two-
    thirds of them--and no one knows why that is. A woman in her
    early 60s is twice as likely to get Alzheimer's in her lifetime
    than she is to get breast cancer. And the statistics are even
    more alarming for women of color. African American women are
    twice as likely to develop Alzheimer's as Caucasian women, and
    Latinas one and one-half times more likely.
        On top of that, more than 15 million Americans are caring
    for someone with Alzheimer's or other forms of dementia while
    they are also parenting and holding down full-time jobs. And
    just so you know, two-thirds of those caregivers are also
    women.
        All of that is why I founded the Women's Alzheimer's
    Movement--to educate all of us about the disproportionate
    effects of this disease on women. I believe that determining
    why women are more affected by Alzheimer's will help us unlock
    some of the mysteries of this disease.
        Instead of focusing only on the formation of plaques and
    tangles in the brain, let us also start focusing on women's
    brains and on their bodies--on their chromosomes, on their
    hormones, and on the way they process inflammation. This could
    help us learn more about Alzheimer's progression and about its
    prevention.
        In fact, I believe studying women and getting more women
    into clinical trials could possibly lead to the cure for all of
    us. I do not believe that this is sexist. I believe it is just
    plain old smart. It is smart--thank you.
        [Applause.]
        Ms. Shriver. It is smart because Alzheimer's is the most
    complex, mysterious, and expensive disease in the United
    States, more expensive than heart disease and cancer, and it is
    the only one of the top ten diseases without a means to
    prevent, cure, or slow its progress.
        In fact, since 2000, the number of deaths from breast
    cancer, prostate cancer, heart disease, and stroke are all
    down. But Alzheimer's deaths are up--up by a breathtaking 89
    percent. It is bankrupting families, and it is on its way to
    bankrupting this country.
        This year, if you add families' out-of-pocket expenses to
    the money Medicare and Medicaid will be spending on
    Alzheimer's, the projected total will drain the economy of $259
    billion. And if our Government does nothing, the costs are
    projected to explode to an astounding $1.1 trillion. I hope we
    can sit for a minute with those incredible, astounding figures.
        I want to take a moment to thank you, Chairman Collins, for
    introducing a bipartisan resolution declaring that achieving
    the primary goal of the National Plan to prevent and
    effectively treat Alzheimer's disease by 2025 is indeed an
    urgent--and I say ``urgent''--national priority because right
    now it is the most seriously underfunded disease in our
    country, this at a time when every Alzheimer's scientist will
    tell you that we are at a critical and potentially
    groundbreaking moment in the history of the research of this
    disease. So much extraordinary progress has been made, but now
    it is stalled. The only thing many of them say keeping us from
    pressing on to find a cure is the Federal funding to move us
    forward.
        For instance, my friend Dr. Rudy Tanzi at Harvard, one of
    the scientists that the Women's Alzheimer's Fund actually
    funds, is a top Alzheimer's researcher who discovered the first
    gene for the disease 35 years ago, and his lab has found two
    dozen more in the last decade. He says that we have learned
    from studying these genes important clues about what needs to
    be done to prevent Alzheimer's a decade or so before any
    symptoms arise. But he says laboratory budget constraints mean
    researchers like him are able to follow up now only on about 10
    percent of the new clues and information that is available, and
    that is just one lab.
        The United States Government is better than this. We are
    letting down the millions who have this disease, the millions
    who are caring for them 24/7--and it is a 24/7 job--and the
    millions who are going to get Alzheimer's disease and other
    forms of dementia as we, the baby boomers, and our millennial
    kids continue to grow older.
        Right now, 10,000 people are turning 65 every day. Remember
    I said that a brain develops Alzheimer's every 66 seconds?
    Well, by 2050 someone in the United States will develop
    Alzheimer's every 33 seconds. Every 33 seconds.
        We have to fund this disease at the level it deserves
    before it levels all of us and our health care system.
        [Applause.]
        Ms. Shriver. We have to fund it at the level we funded AIDS
    and that we funded cancer. This is an equal opportunity crisis,
    a tsunami that can crash into any and all of us, Republicans,
    Democrats, Independents. And make no mistake: without a Federal
    commitment like you have spoken about, we are going to lose
    this fight.
        You know, over the years I have racked my own brain
    wondering why Alzheimer's does not get funded at the level of
    these other diseases. I have asked myself, is it not being
    marketed properly? Is it not sexy enough, hip enough? I have
    wondered, is it because we think it is just a normal part of
    aging? Which, of course, it is not. Or is it because our
    country is so obsessed with youth and none of us want to grow
    old?
        Then I thought to myself, maybe it is sexism. Maybe because
    it disproportionately affects women, that is why it is not
    getting funded. I cannot tell you how many people, even
    doctors, have said, ``Well, isn't it just because women live
    longer?'' No, that is not why women are getting it.
        ``So what is it?'' I have thought to myself. Is it because
    deep in our hearts we are all so terrified of losing our own
    minds that we just want to push this disease out of the field
    of vision, we are trying to deny that it even exists at all?
        Well, the truth is we cannot deny it away anymore.
    Alzheimer's is everywhere, and it can develop in your brain for
    20 years before a single symptom ever shows up telling you that
    you have it. And what does that mean? It means that the chances
    are that several of us sitting in this room right here today
    have it right now, and we do not even know it. Think about that
    for just a minute. Imagine one of you up there, imagine one day
    turning to someone that you have served with in this August
    body for years, and not knowing who they are. Imagine looking
    at the person in your home who you have loved for decades and
    you cannot remember their name. Imagine your family being
    unable to care for you physically, financially, emotionally, or
    spiritually. Imagine. Imagine that scenario.
        Well, millions of Americans do not have to imagine it.
    Probably most of the people in this room do not have to imagine
    it because they are actually living it.
        One of them that I asked to join me here today in this room
    is 61-year-old Pam Montana. She is right there. She is sitting
    behind me. I wanted her to come here today because she was just
    diagnosed with Alzheimer's. Her diagnosis forced her to leave a
    successful career at Intel, and it forced her husband, Bob, to
    quit his career as well so he could care for her. They face an
    uncertain future, and a scary one at that, but I wanted you to
    see Pam because she is the face of Alzheimer's, a woman in her
    prime, a mother, a wife, someone who had a successful career,
    who was earning money. This is the face of Alzheimer's. And she
    and her husband, along with all of the people in this room,
    have come here to Capitol Hill from all over this country to
    use their voices to advocate for increased funding, to tell you
    what it is like to live like this every single day 24 hours a
    day.
        You know, there are so many brilliant minds now focused on
    this issue, so many forceful advocates like those of you on
    this panel and the 1,300 Alzheimer's Association advocates that
    are fanning out across the Hill today. So many ones like the
    ones in this room who can no longer accept when they are told,
    ``We just do not know what causes this disease or what to do
    about it.'' For them, that is plain old unacceptable. And for
    me, as a child of Alzheimer's, it is also unacceptable. And as
    someone who is Pam's age, it is terrifying.
        The statement ``We just do not know'' needs to be repealed
    and replaced. It needs to be repealed and replaced with this:
    ``We do know, and here is what you can do.'' Because it was not
    so long ago that HIV/AIDS was a certain death sentence and
    cancer pretty much was incurable and now so many of them are
    curable. Science and investment in science has turned all of
    that around. But nobody--nobody--who has ever been diagnosed
    with Alzheimer's has ever survived it. We can and we will do
    better than that.
        You know, when my uncle John F. Kennedy was President, he
    challenged this country to put a man on the moon. It had never
    been done before. Well, today I challenge you to also do
    something that has never been done before. Give us the first
    person who survives a diagnosis of Alzheimer's disease.
        I am asking this----
        [Applause.]
        Ms. Shriver. I am asking this Congress to do what it takes
    to get our brilliant researchers back up and working at full
    capacity in their laboratories around this country, doing what
    they do best, which is finding solutions, finding answers,
    finding cures. And not only that, until we find a cure, we have
    to do a better job, as you have talked about today, educating
    the public on ways to live healthier lifestyles.
        We now know through science and technology that the brain
    never stops developing. Believe it or not, that is new. So we
    need to educate people on the connection between brain health
    and healthy diet, physical activity, and stress reduction, and
    how they can expand their brain power with lifelong learning
    and social connection. This is a priority for the Women's
    Alzheimer's Movement, which is why we have partnered with the
    Equinox sports clubs and gyms all across this country for a
    national program called ``Move for Minds.'' We are determined
    to get this message out to mainstream America that they can
    control their brain health, that their genes are not their
    destiny.
        We also need to get support to the millions of caregivers.
    We have spoken about them today. The ongoing stress on these
    families is unimaginable. They need the resources to help them
    care for their loved ones while also working. And we must also
    ensure that there is a well-trained professional workforce
    ready to provide quality care to the increasing number of
    people living with Alzheimer's and other dementias and who will
    need their services at home and in facilities as they grow
    older.
        I know you might be thinking that this is quite a to-do
    list, but I have never met anybody--I have never met a woman
    who was not good at crossing off her to-do list. And I strongly
    believe that this to-do list is something we can actually do.
    Even in this current climate, and perhaps more so in this
    current climate, the American public is desperate to see
    Democrats and Republicans work together. They are desperate to
    see success here in Washington. And this is a great place to
    start.
        So I am asking all of you, with the brains that you do have
    today, to come together, Democrats and Republicans, and make a
    commitment. Let us do what we need to do to stop the onslaught
    of this mind-blowing disease, because America should be the
    leader in solving this global medical crisis. We are the
    greatest country on the planet, and finding a cure for this
    disease will make us the smartest one to boot.
        Thank you very much.
        [Applause.]
        The Chairman. Thank you so much. Thank you. Thank you.
        [Applause continues.]
        Ms. Shriver. Do not make me cry.
        The Chairman. Thank you so much for your very compelling
    testimony. As you can see from the response that you have
    received, I think you have motivated every single person who is
    here as an advocate to go to their Senators and House Members
    and tell the story of what is needed and that we certainly
    cannot stop now. We have to continue to go forward, and that
    does require funding. And if ever there were a case where
    investment is going to pay dividends and ultimately not only
    save money but improve the quality of people's lives, it is an
    investment in Alzheimer's disease. So thank you.
        [Applause.]
        Ms. Shriver. Absolutely, and this will indeed make America
    great again.
        [Laughter.]
        Ms. Shriver. Because this is, as we have said, the most
    expensive disease in the country right now.
        The Chairman. It is.
        Ms. Shriver. So funding it and finding ways to prevent it
    and/or cure it will save us billions of dollars.
        The Chairman. You raised a very interesting point about why
    people are less comfortable with talking about Alzheimer's
    disease, and you told the Committee back in 2009, when your Dad
    had been diagnosed 6 years earlier, that you had felt at the
    time confused, powerless, and alone. I think a lot of people
    still feel that way when they get the diagnosis or when their
    loved one does.
        Do you feel there is a way that we can reach out more to
    families who are dealing with this devastating disease?
        Ms. Shriver. Well, yes, and I think that all of the people
    in this room feel very hopeful. They are putting their hopes in
    this Committee, they are putting their hopes in their
    Government, that you will actually secure the funding to find a
    cure for this disease.
        I think the more we talk about subjects that are somewhat
    taboo, the more we talk about aging, what it is really like,
    the strength it really takes to age, the more we talk about the
    truth about caregiving, how complicated and difficult that is,
    the more we try to engage not only just lawmakers but corporate
    America, the more we try to get companies to look at caregiving
    leave, the more we try to encourage them to keep people working
    who are boomers, the more we really talk about the reality of
    how our country is aging and the needs of our population, I
    think this disease will lose its stigma. And people, I think,
    do not want to talk about it because they are afraid of losing
    their jobs; they are afraid there is not a cure; they are
    afraid if they tell somebody or even if they get tested, what
    hope is there for them? Which is why we are often talking so
    much about the lifestyle choices now that we are making. What
    we are learning is that, as I said, our genes are not our
    destiny. We are now learning that there are things we can do to
    keep our brains engaged, things that 20-, 30-, 40-year-olds
    need to start doing.
        We are now learning about the benefits of interval
    exercise, of certain kinds of food, of meditation, of, you
    know, how we manage stress, and there is nothing more stressful
    than trying to manage a job, be a parent, be a provider, and be
    a caregiver. So I think the more that people out in Main Street
    America see their elected leaders acknowledging that funding
    needs to happen for this disease, that support needs to happen
    for the caregivers, that the more they see success here, the
    more hopeful they will be out there.
        The Chairman. I think that is exactly right.
        [Applause.]
        The Chairman. I also believe that people, when they are
    first diagnosed, are worried they are going to be isolated and
    treated differently by their family and friends because of the
    stigma to which you referred.
        I want to switch to another topic in just the less than 2
    minutes I have left. I know that you have kicked off the
    program Move for Minds, and you alluded to it in your
    testimony. And this is fascinating because we are going to hear
    from our next panel about some of the interesting research that
    suggests that, in addition to the genes that may produce
    Alzheimer's, particularly early onset, there are ways that we
    can stave off or delay the disease for some people--not for
    everyone.
        Could you talk more about what you have learned about the
    body-mind connection? You were starting to talk about that.
        Ms. Shriver. Well, amazingly, people are surprised that
    they are connected, which is so extraordinary. This is one
    body, and our brains and our bodies are connected. And Senator
    Casey was mentioning that we are now learning that a heart-
    healthy diet is also good for the mind. We are learning that.
    We are learning, as I said, that the mind can continue to grow.
    It is important to learn new things. Just because you learned
    certain things up until you were 30 or 40 does not mean you do
    not have to keep engaging the mind. And through technology, we
    have been able to study the brain and see how it can continue
    to grow.
        A piece I am doing for NBC this week is on the super-ager
    brain, and there are now studies of people who are in their 70s
    and 80s who have a brain of a 20-year-old. And it is really
    interesting. They are people who push through, who are
    constantly learning, and when it is hard to learn, they push
    out of their comfort zones. They are also people who manage
    stress differently than a lot of other people.
        So we are beginning to learn things about how the brain
    ages, and I think one of the things certainly that Move for
    Minds is advocating is a holistic approach, learning, staying
    socially engaged, exercise. Every researcher and doctor that I
    have spoken to as I have traveled this country and I say to
    them, ``If there is one thing I could tell people to do, what
    would it be?'' And they say, ``Exercise, exercise, exercise,
    because that pushes the blood to the brain.''
        So eating a mind- or brain-healthy diet, exercising,
    learning new things, challenging yourself, pushing yourself out
    of the comfort zone, eating properly, meditation, mindfulness,
    turning off technology, resting your brain, sleeping--these are
    all lifestyle things that we are now learning affect not just
    the body but the brain, and that we can start doing them when
    people are very young. As I have said, Alzheimer's manifesting
    20 years in your brain, this is something that we are--a
    message we want to get out to 30-, 40- and 50-year-olds, and
    particularly also to women who are perimenopausal or
    menopausal. That is why I am excited about a lot of the
    research that we can perhaps get going on women, because we are
    different and women are handling these lifestyle issues
    differently than men. And that really has not been looked at.
        The Chairman. Thank you very much.
        Senator Casey?
        Senator Casey. Thanks very much, Madam Chair.
        Ms. Shriver, we are grateful you are here again. We wish
    you did not have to come back because we want to make more
    progress on this challenge, but I thought one of the best
    things, among the many things you said that were inspiring, was
    we hope that down the road we are going to be able to say,
    ``Here is what you can do,'' as opposed to something else. So
    we are grateful that you brought that sentiment and that goal
    to us here in the Senate. And it is a mission. This is, I
    think, a mission worthy of a great country, and you have given
    us a good road map and a good to-do list. We are grateful for
    that.
        I wanted to focus on a program that I think we are all
    more--not just aware of now, but I think a program that we
    appreciate more than we did even a few weeks ago or a few
    months ago, and that is Medicaid. Among the many things that
    Medicaid does, for example, it provides health care for 1.1
    million children in my home State. Lots of folks get into
    nursing homes because of Medicaid. And a third major category,
    of course, are Americans with disabilities. Your family has
    done so much, it is hard to calculate the impact your family
    has had in a positive way on people with disabilities.
        We are told that one segment of the disability community,
    those with Down syndrome, those Americans are
    disproportionately impacted by Alzheimer's. And I wanted to ask
    you what would you hope we could do about that, and if you have
    yet another to-do list, we would love to have it.
        Ms. Shriver. Well, my brother Timothy, who runs the Special
    Olympics, would probably best be equipped to deal with that,
    but certainly the statistics do show that people with Down
    syndrome, 100 percent of them do end up with Alzheimer's. But
    only 50 percent of them actually exhibit the traits. So I think
    there are some interesting studies going on. Some families have
    very bravely volunteered to be in those trials and in those
    studies.
        I think one of the things we are trying to do is to get
    more Americans, be they families with Down syndrome or just,
    you know, women and men in particular, into these clinical
    trials. I have talked to researchers all across the country;
    they say they have a really difficult time getting people to
    participate in clinical trials. And so this is a big mission of
    mine, to actually ask people, also to ask corporate America to
    make it easier for people who work for them to participate in
    clinical trials. Now if you participate, you have to take
    vacation time or a sick day. What about the idea that they
    would pay you? You know, you do not have to take time off to
    actually participate in a clinical trial because it is a form
    of national service. We all benefit from individuals brave
    enough who take the time to participate in clinical trials.
        So once again, this comes back to funding, this comes back
    to making it possible for families to participate in trials, be
    it a family with a Down syndrome member, and there is also, you
    know, a lot of fear that goes into that. Obviously, people
    participating in those trials, I think people are generally
    afraid to participate in a trial. But I have also met other
    ones who say that knowledge is power and that they know more
    people who would participate if it was easier to participate.
        Senator Casey. I appreciate that. Finally, I just wanted to
    thank you for highlighting the disproportionate impact this
    disease has on women. I grew up with four sisters and have four
    daughters.
        Ms. Shriver. Whoa.
        Senator Casey. So this is especially----
        Ms. Shriver. How are you?
        [Laughter.]
        Senator Casey. Doing just fine.
        Ms. Shriver. There is a book in there somewhere.
        Senator Casey. But we are grateful, and I just hope we
    can--and this is a challenge that you pointed to and I think
    all of us wrestle with. It is not just the focus on funding,
    but sustaining that focus over time.
        Ms. Shriver. Right.
        Senator Casey. Because like a lot of things in the Senate
    and the House, and I guess society more generally, we go from
    one issue to the next. And what is a front-burner major issue
    on a Monday afternoon can be forgotten about even by Tuesday
    morning. We have to figure out more and better ways, I think,
    to sustain the focus on the urgency, the primacy of getting
    more funding. And I am grateful that you gave us the
    inspiration today to do that and also the data that undergirds
    that urgent priority.
        Ms. Shriver. Thank you, Senator. And I think what is
    particularly alarming to me is that most women do not know that
    they are at risk. They do not know these facts. They do not
    know that there are things they might be able to do today that
    could perhaps prevent this or delay. And they do not know that
    there are things that they could begin to do in their daily
    lives that might help them out.
        But I also think that more and more advocates like the ones
    in this room are going to tie their votes to people who support
    this kind of funding. They are getting really smart about
    advocating and making sure that their voices are heard. And I
    encourage them to do that because this needs to be a front-
    burner issue every single day, not just for the people in this
    room--for many, it is too late for them--but for the millions,
    as I said, turning 65 every single day, the baby-boomer
    generation, and our children. Because if I were to get
    Alzheimer's, it is going to impact my entire family. It is
    going to impact the future of my children's work life. It is
    going to impact their parenting, how their families unfold. And
    I happen to be able to afford care. Millions and millions of
    Americans cannot handle the out-of-pocket expenses that they
    are incurring today. It is putting them into poverty on the
    brink. They are quitting their jobs. They are mortgaging their
    homes. And it is excruciating.
        So this is a front-burner issue if I have ever seen one,
    and I have been around politics a long time. This impacts the
    entire family, and it is impacting at a level that we have
    never seen before.
        Senator Casey. Thank you very much.
        Ms. Shriver. Thank you.
        The Chairman. Thank you.
        Senator Fischer?
        Senator Fischer. Thank you, Chairman Collins and Ranking
    Member Casey, for convening this important hearing today, and I
    also want to thank Ms. Shriver and all of our witnesses for
    being here. I am very pleased to join the Aging Committee this
    year.
        The impact of Alzheimer's is felt far beyond just those who
    are inflicted with this really evil disease. It is felt by
    family and friends, caregivers and others who interact with
    these individuals.
        Every family has a story. My sister-in-law is a victim of
    early-onset Alzheimer's, so I am thankful that we are having
    the hearing today on this topic.
        Ms. Shriver, through your work across our country, what are
    some of the memorable and innovative, really local or
    community-based approaches that you have learned about or that
    you have seen, and maybe that you have even helped to develop,
    that will help the victims and help contribute to this fight we
    have against this disease?
        Ms. Shriver. Thank you, and I am sorry for the pain in your
    own family, and thank you for sharing that. One of the big
    things that I am always in awe of is that families do share
    their stories because it takes great bravery to share your
    stories, and that is how we get these stories more out into the
    public arena, and it is how we begin to destigmatize this
    disease.
        When I was First Lady of California, I came into contact
    with several different kinds of daycare centers where working
    women could bring their children and their parents
    simultaneously, and it was really quite inspiring to see kids
    who were about 5 or 6 read stories to people who were
    grandparents. This was, I think, an innovative approach because
    you did not have to go to two or three different locations to
    drop a loved on off.
        One of the great challenges I found when my Dad got
    Alzheimer's and my mother began to get strokes was finding
    caregivers in the professional workforce who were well trained
    about the differences in these brain-related challenges,
    someone who has a stroke versus someone who has Alzheimer's or
    Parkinson's or another form of dementia. We need a more
    educated workforce, and obviously a caregiving force that makes
    a living wage as well.
        But I think there are a lot of innovative, you know,
    facilities going on, people who are using music and art and
    different kinds of therapy to engage the mind. What we are
    learning is that music engages parts of the brain. As Senator
    Collins said, my father did not know who I was, but he could
    say a ``Hail Mary'' and he could sing a song that he knew when
    he was 18.
        So there is still so much we do not know about the brain. I
    think we have to look at, just as we look at parental leave,
    maternity leave, elder care leave, caregiving leave, look at
    different kinds of forms of daycare, elder care, child care,
    how we can combine that in different locations, because we
    often find that those with Alzheimer's at later stages are
    doing a lot of the same activities that little children can do,
    also looking at more intergenerational living systems. I think
    I was very excited--I have seen homes where young kids went to
    live--they were going to college, and they lived rent-free in a
    building which was mainly seniors with Alzheimer's, and in
    exchange for room and board, they played music or they went and
    had meals with people with Alzheimer's and how that benefited
    more generational living. I think that is an exciting new
    space. So whether it is in terms of daycare and elder care
    combined, whether it is terms of, you know, young people,
    millennials living alongside people who are 70 and 80 years of
    age, I think that is an exciting, new, and inspiring way for
    the future.
        Senator Fischer. And I know since you were last here, we
    have seen some amazing strides in research and the development
    that we have there. We have looked at education and prevention
    and treatment also.
        What do you see as the most significant milestones that we
    have reached so far? And what do you envision as being
    achievable?
        Ms. Shriver. Well, I envision a cure being achievable
    immediately. I envision a cure. I envision, you know, some pill
    or like what happened with AIDS, where you can get this
    diagnosis but continue to work and live and be a productive
    member of society. I really do believe that if the Federal
    funding reaches the level that we have asked for or beyond
    that, a cure is within our reach. As I said, it happened for
    AIDS activists. It happened in the cancer field. And I see no
    reason why it cannot happen in the Alzheimer's space as well.
        I think this is a very complex and mysterious disease. I
    think it is--every researcher that I have talked to says it is
    really--we have to actually approach it perhaps differently
    than we have been approaching it in the past. We have to look
    at people earlier. We have to look at women versus men. We have
    to look at chromosomes. We have to look at inflammation. We
    have to look at things that perhaps we did not look at before,
    focusing more on plaques and tangles.
        But I am really hopeful, really hopeful, that a cure is
    within our grasp. And I do not mean 20 years from now. I mean 5
    or 10 years from now.
        Senator Fischer. Thank you.
        Thank you, Madam Chair.
        The Chairman. Thank you.
        Senator Tillis?
        [Applause.]
        Ms. Shriver. But I would just add that I am going to be
    back here again if we do not get the funding and we do not get
    a cure.
        [Applause.]
        Ms. Shriver. I retired my purple dress. I am going to go
    get a new one to come back here.
        Senator Fischer. Hopefully you will not need to.
        Ms. Shriver. Okay. Thank you.
        Senator Tillis. I was about to say, well, I hope to never
    see you again.
        Ms. Shriver. Oh, okay.
        [Laughter.]
        Senator Tillis. In a good way.
        Ms. Shriver. We just met.
        Senator Tillis. Thank you so much for coming. And do we
    have any of the North Carolina group in the crowd here that I
    met with earlier? Thank you all for coming back. This is the
    third year that they have been back, and this is something that
    I was interested in when I was Speaker of the House. We worked
    on the things that are within the State purview. A lot of that
    had to do with caregivers.
        Ms. Shriver. Right.
        Senator Tillis. That is one thing that I happen to agree
    with you. The fact that you came here because you think that
    NIH funding is at risk and that is a real problem, and it is a
    problem that we need to solve by just simply making this a
    priority. And I think that you have a number of people here who
    are going to work to do that.
        You know, it is the head-meets-the-heart policy. When I was
    Speaker of the House in North Carolina, I said that the
    policies I like the most were the things that have an enormous
    impact on an individual and their families and saved a lot of
    money.
        Ms. Shriver. Right.
        Senator Tillis. That then freed up resources for so many
    other things that we need to do. So I think we just need to
    better educate our members who think that there is not a
    compelling fiscal reason for doing it. It is not the primary
    reason. It is a secondary benefit for actually trying to help
    people who have this horrible disease. So thank you for your
    advocacy.
        But I want to talk about things that we also need to do for
    the caregivers and things that we need to do to educate people
    who are--just because of the numbers--going to go through this,
    and understanding what they need to do to make this horrible
    journey that a loved one is going to go through manageable.
        So what else can we do or what other things should we be
    looking at as matters of priority. Things that are working in
    one area that need to be nationalized to better prepare
    caregivers for the hard task that they have to help their loved
    ones?
        Ms. Shriver. Well, I think you are going to hear from some
    people who are doing that 24/7 in just a few moments, and I
    think they would be able to better advocate exactly what would
    help them. Every caregiver that I have met--and I have met
    thousands and thousands, be they men or women. And I just want
    to say even though my focus is really on women, I have met
    extraordinary men--Bob is sitting right here behind me--
    extraordinary men who make it their priority to care for their
    loved ones, great stories of love and commitment and sacrifice
    going on in this country day in and day out.
        Most of them say they need a break. They need time, because
    very often the caregiver gets sicker than the actual person
    that they are caring for. They need someone to come in and help
    them, someone they can afford, so that they can have some time
    to focus on their own mental and physical health. So I think
    routinely you hear that, making it affordable and that the
    person that they can actually hire is well trained in what
    their loved one needs. So we need a caregiving force.
        As I said, when I was looking for a caregiver for my
    father, no one was trained in what it took to deal with someone
    who has Alzheimer's, so they did not understand how he might be
    different from somebody else that they were assigned to care
    for. So I think they would advocate and I think they will tell
    you we need a trained workforce, and trained in the different
    forms of dementia and different brain-related challenges,
    right? They need to be able to afford caregiving so that they
    might be able to continue to be the provider in their family.
        As I mentioned with Pam being diagnosed, she quit her job,
    and Bob had to quit his job as well. That is not sustainable
    for families, right? And that is what is happening because it
    is a 24/7 job.
        So I think that being able to afford caregiving, being able
    to find educated caregivers and a workforce, as I said, that is
    capable of handling the tsunami, also to encourage people to go
    into this line of work--it is a growing line of work--paying
    them a living wage, an educated workforce, and that is really,
    I know, what you want to talk about as well today.
        Senator Tillis. Well, Madam Chair, I have got another
    committee that I hope to get back to and ask questions of the
    panel. Otherwise, I will submit questions for the record. But,
    again, I think that we need to continue to fight for--I
    supported the funding, the increased funding for Alzheimer's.
        Ms. Shriver. Thank you.
        Senator Tillis. I will continue to support it. We need to--
    also, you made a point in your statement that I think is very
    important, and it has to do with bipartisanship.
        Ms. Shriver. Yes.
        Senator Tillis. I am sort of kind of a consulting nerd
    here, and we have got to think about other ways--as we look for
    funding, we also need to look for ways to be more productive
    with the funding that we are producing. And I think this
    represents an opportunity for Republicans and Democrats to come
    together and look at some of the hurdles, whether it is
    research, regulatory environment, authorization for new
    therapies, those sorts of things that we can look at and find
    ways to remove barriers to get more productivity and a faster
    path to treatments and a cure. And it is something that we need
    to focus on, not just talk about it, because we talk about it a
    lot, but focus on it because I think there are billions of
    potential dollars out there beyond what we are putting in NIH
    that we can unleash and accelerate that time to a cure.
        Ms. Shriver. I think absolutely, and accelerating certain
    drugs, that is another thing, obviously, that a lot of
    researchers who have said it just takes forever to get anything
    through the pipeline. So I think, Senator, you bring up a
    really good point to look broadly at the research, at the FDA
    approval process. How do we get certain drugs that might be
    promising into the pipeline quicker?
        So I think that is exciting to me that you are willing to
    look at that, because as I said, in the long term this is
    something that will save our country billions and billions of
    dollars. So this is an example for the country where Democrats
    and Republicans can work together. This is a perfect example of
    an issue where head and heart can work together, and where it
    does not make economic sense not to work together. Whether you
    even look at it in terms of humanity, whether you look at it in
    terms of fiscal responsibility, it all lines up. That is why it
    is so incredulous that we would even think about cutting it
    instead of expanding it, because it is impacting so many
    families of both political parties, Independents, Greens, you
    name it. It is an equal opportunity offender.
        So I think we can put our brains together and say this
    works on every level. Let us increase the funding. Let us look
    at the pipeline for drugs. Let us look, as you said, at all
    different hurdles that might be impacting research, and look at
    it holistically just as I have been talking about, trying to
    look at the brain and the body holistically, trying to look at
    the issue holistically. Alzheimer's is one form of dementia,
    right? And there are many forms of dementia. But it is leveling
    our families all across this country. So I welcome the fact
    that you are willing to look at all different aspects of it.
        Senator Tillis. Thank you.
        Ms. Shriver. Thank you.
        Senator Tillis. Thank you, Madam Chair.
        The Chairman. Thank you very much, Senator.
        Senator Blumenthal?
        Senator Blumenthal. Thank you, Madam Chair. And thank you
    for being here today. Thank you to you and your family for
    taking on so many powerfully important causes, and I am not
    going to embarrass you and them by going through the list. But
    you have been such a great champion of this cause, and I think
    the turnout that we see today shows the growing American
    awareness and support for it. And all the more incomprehensible
    the budget cuts that have been proposed by the President, 18
    percent in HHS, including $5.8 billion in cuts to the NIH
    research budget. We should make no mistake that the axe will
    fall on the type of research that is so critically necessary,
    irrefutably and indisputably important.
        I am very focused on the aspect of this issue that you
    raise not only from the point of view of individuals,
    civilians, but also veterans.
        Ms. Shriver. Right.
        Senator Blumenthal. And I have helped lead the efforts on
    the Veterans' Affairs Committee and in the Senate to try to
    deal with the invisible wounds of war, which we know afflict 30
    to 50 percent of everybody coming out of combat, the impacts on
    the brain, post-traumatic stress disorder, not even diagnosed
    until the 1980s, but leading to dementia and Alzheimer's for
    reasons that we still are exploring through research.
        In that sense, you know, I was struck by what you said
    about the caregivers, where the VA and the Federal Government
    have only begun recently trying to help people who deal with
    folks who are afflicted with this disease. They need a break.
    They need support in insurance and counseling, in financial
    wherewithal, and in basic understanding and support, because
    all too often we think of the hero as being the wounded
    warrior, which he or she is, but the unsung heroes are also the
    caregivers.
        Ms. Shriver. Right.
        Senator Blumenthal. So I have been very glad and grateful
    that Senators Collins and Baldwin have supported legislation,
    S. 1719, the RAISE Family Caregivers Act, which begins to work
    in this direction. I would be very interested in more specific
    recommendations that you have for what we can do to help the
    caregivers.
        Ms. Shriver. Well, as I said, you know, I think individuals
    who are dealing with this 24/7 would best be able to describe
    what they feel like they need. I am aware of your extraordinary
    work, and this is an area where so many veterans have come up
    to me actually looking at different forms of post-traumatic
    stress, looking at different kind of innovative things they
    think are working on the brain--magnetic treatments on the
    brain that at not FDA approved that seem to be helping. But
    once again, when we talk about Democrats and Republicans
    working together, the brain, working on finding therapies,
    working on finding--making the FDA approval process speedier
    for things that work on the brain is a huge open space that,
    once again, veterans can work alongside caregivers.
        I think oftentimes when we talk about caregivers, people
    think of it as a soft issue. You know, a long time ago, when I
    was getting into journalism, people used to say, ``Go do
    women's issues.'' And I am, like, ``What are women's issues?''
    They are, like, you know, ``Caregiving, women stuff.'' And I
    am, like, ``That is hard stuff,'' right? You know, caregiving,
    there is not anything more muscular----
        Senator Blumenthal. Harder than what we do.
        Ms. Shriver. Yes, but caregiving, as I have written
    numerous times, that is muscular, that is tough. You have got
    to be unbelievably strong to do what the men and women in this
    room are doing 24/7. And as late stage happens, you have to be
    physically, mentally, emotionally, and spiritually, like, you
    know, unbelievably strong.
        So I think that these families need support, obviously, as
    I have said before, financial support, emotional support, time.
    They need to know that they can continue to care for their
    family and their loved one, and so they need support with that,
    whether it is through Medicaid, Medicare, you know, they need
    that. And they need hope. I think hope helps us all, right?
    Hope that the Government is funding therapies and research and
    supporting caregivers at a level that we are not seeing today.
    I think when people have hope, they can get through all kinds
    of hoops in their daily life. When there is no hope, when they
    hear that funding is decreased, when they think there is no
    hope to get a trained workforce out there, it is hard to keep
    going, right? It is hard.
        But I think, you know, there are people in this room who
    can better describe what they are up against 24/7 than I
    probably can.
        Senator Blumenthal. Well, if it gives them any hope, I hope
    you will give everyone you are in contact with the message that
    on this Committee and I think in the Senate there is a lot of
    support for what you are doing and that we will fight these
    cuts that are proposed.
        Ms. Shriver. Thank you.
        Senator Blumenthal. That we will work----
        [Applause.]
        Senator Blumenthal. That we will work for this cause, and
    if there is one truth about American democracy that has been
    reaffirmed for me in recent weeks, it is that people can make a
    difference.
        Ms. Shriver. Amen.
        [Applause.]
        Senator Blumenthal. That every individual can make a
    difference.
        Ms. Shriver. And, you know, as Senator Collins knows, I
    have been at this for 14 years, and every time I thought,
    ``Okay, maybe now. Maybe now.'' But I have never been more
    hopeful than I am today because I think people are engaged--
    when you talk about our democracy, people are engaged. They are
    savvy about their voices and their votes. They know a lot more
    about the process, I think, in the last year than perhaps ever
    before. People are engaged in our civics. The understand what
    an Executive order is and is not. They are aware of what NIH
    funding is and what the implications of cutting it are, which
    is why you see so many people here. And they are not going to
    take it. They are not going to step back. They are calling
    their Senators and Congressmen.
        [Applause.]
        Ms. Shriver. And I think that is exciting. I think it is
    exciting, but it also ought to put everybody on Capitol Hill on
    alert, because people get it now. They get the power of their
    voice, and they get the power of being here, and they are not
    going to take these cuts.
        Senator Blumenthal. Well, thank you very much for your
    eloquence and your advocacy.
        Ms. Shriver. Thank you.
        Senator Blumenthal. And for helping to enliven and educate
    the American public.
        Ms. Shriver. Thank you.
        Senator Blumenthal. And I would just leave you with this
    quote, and I am way over time, so I apologize. Margaret Mead
    said----
        Ms. Shriver. Yes. I will say it with you.
        Senator Blumenthal. [continuing]. ``Never doubt''----
        Ms. Shriver. ``Never doubt that a small group of people can
    change the world.''
        Senator Blumenthal. [continuing]. ``a small group of
    intelligent and committed people can change the world.''
        Ms. Shriver. ``In fact''----
        Senator Blumenthal. ``It is the only thing''----
        The Chairman. `` . . . that has ever has.''
        Senator Blumenthal. [continuing]. ``that ever has.''
        Ms. Shriver. Amen.
        [Applause.]
        The Chairman. Senator Donnelly.
        Ms. Shriver. I have that above my computer.
        Senator Donnelly. Thank you, Madam Chair. Thank you so
    much, Ms. Shriver.
        I just want to say as an aside that my home town is South
    Bend, Indiana, and your family brought the Special Olympics
    there many years ago.
        Ms. Shriver. Yes.
        Senator Donnelly. And it was one of the most extraordinary
    times not only in my life but in our town's life. And we are
    still grateful to this day for all that you did to bring the
    Special Olympics there and for all the special moments and
    special athletes who were there to celebrate. We really enjoyed
    it.
        Ms. Shriver. Thank you. I remember being there myself and
    my mother saying, ``You should go confess to Father Hesburgh.''
        [Laughter.]
        Senator Donnelly. Well, we were all in line for that, I
    assure you.
        One of the things I wanted to ask you was, how much hope
    does it give you when you look at where the research is now
    compared to where it was just like 2 or 3 or 4 or 5 years ago?
    It is moving pretty fast, isn't it?
        Ms. Shriver. It is moving pretty----
        Senator Donnelly. But not fast enough.
        Ms. Shriver. But not fast enough.
        Senator Donnelly. Right.
        Ms. Shriver. I would be lying to you if I said to you,
    ``Oh, I am really excited.'' But I actually am really hopeful.
    As I said, I have been at this for 14 years, and when I first
    started, people did not even utter the word. It was always said
    in a whisper. People had no understanding of Alzheimer's. They
    did not really face it person to person. Now I do not go 15
    minutes on the street or anywhere else without somebody coming
    up to me talking about how they have been impacted. I meet
    young people going into neuroscience because their grandmother
    or their grandfather got an Alzheimer's diagnosis. I meet men
    and women who are engaged in, you know, advocacy and finding
    cures or going into daycare or going into the health care
    business because they have come face to face with this. And I
    meet a lot of really, you know, young entrepreneurs who are
    developing apps, trying to deal with caregiving demand, who are
    trying to find the science, who think maybe they can do
    something that the Government cannot do. So there is a lot of
    energy around this from the business world, from young people,
    from advocates.
        But do I think there is a cure around the corner? I do
    think there is a cure--and I said this last night--in some dish
    somewhere waiting to be funded, waiting to come over the final
    line. I have to be that hopeful; otherwise, I would not be
    here, and I would not be this optimistic.
        So do I know where it is? No. But do I think it is within
    our grasp? Yes.
        Senator Donnelly. I have always thought that is one of the
    magic parts of the NIH, is that when you said it is in some
    dish somewhere, that when you go talk to them and you go,
    ``Well, which one is it?'' and they go, ``Well, we do not know,
    and that is why we have so many places that we are working
    with.''
        And so I have always thought, and as you just commented,
    that one of the great things they do is we are not chasing this
    with one line. We have got 30, 40, 50 fishing lines out there
    to try and catch this cure at some point.
        Ms. Shriver. I think we probably need 100 fishing lines out
    there. And I would advocate that we need more fishing lines out
    there in a broader sense, because I think we have been having
    some fishing lines in some main areas, and I think we need to
    broaden that. That is why I am trying to raise money for women-
    based research, and I am saying, like, ``Okay, that did not
    work, that did not work. Let us look here. Let us look at
    places that we have not looked. Let us try to move it along
    quicker, and let us look at what we have not looked at as
    opposed to continuing to look at what we have looked at that
    has come up empty.''
        Senator Donnelly. You mentioned that two-thirds of folks
    who have been afflicted with Alzheimer's are women. Have you
    seen any research that gives you an idea why?
        Ms. Shriver. No, and that is why I am kind of doing this
    24/7, because ``I do not know'' is unacceptable. And I go
    around to different labs, and I say, ``Well, have you studied
    women?'' And they are, like, ``Well, no, but we will now.'' And
    so I think it is just--you have to also remember, I think, this
    is quite new in a way. It has not been around in the
    consciousness or in the awareness as long as cancer. And it
    does not seem to have had the same urgency as AIDS, for
    example.
        But I think we are now at a place where it does. Advocates
    have become much more forceful. We are marketing it actually in
    a different way. I think encouraging researchers to look at
    women in ways that they had not looked at before is exciting to
    them. Women do have different chromosomes, inflammation. They
    do process it differently. Having people look at it as maybe
    perhaps Type 3 diabetes, to look at maybe 20, 30 different ways
    of looking at it is an exciting space that did not exist
    before.
        Senator Donnelly. Well, I am just about out of time, but I
    will make you one promise, and this is to everybody here, and I
    know the panel feels the same way. I promise you those NIH
    cuts, they will never happen. So you do not have to worry about
    it.
        Ms. Shriver. Amen.
        [Applause.]
        Ms. Shriver. Thank you.
        Senator Donnelly. Thank you.
        The Chairman. Thank you, Senator. I agree.
        Senator Donnelly. And she is more powerful than me.
        [Laughter.]
        The Chairman. I am delighted to call upon another new
    member of our Committee whose birthday happens to be today,
    Senator Cortez Masto.
        Senator Cortez Masto. Thank you.
        The Chairman. Happy birthday.
        Senator Cortez Masto. Thank you so much, Madam Chair,
    Ranking Member. Thank you for having this discussion. And, Ms.
    Shriver, thank you so much for what you do and being a voice. I
    always feel that education is that first step in prevention in
    any manner, and we do not do enough of it at times.
        And to everyone who is in the room today, being a voice on
    Capitol Hill for addressing the importance of brain health and
    Alzheimer's, thank you for being here.
        I really just have a comment. In 1990, my grandmother, whom
    I am named after, had Alzheimer's, and that was at a time when
    we really did not understand it. We did not have enough health
    care programs for it. She, unfortunately--she was one of the
    smartest women I ever met, and tough and active in her
    community, and she came down with this horrific thing in
    Nevada. And my grandfather was her caregiver, and my mother was
    her caregiver, and my aunt was her caregiver, and my cousins
    and I and my sister, we were all caregivers. And I remember
    thinking--she eventually passed away in a nursing home, and I
    remember thinking, walking in the nursing home, thank goodness
    at least she had family around here, because there were people
    there that did not. And to me, that is part of the tragedy of
    this horrific disease, that I feel that we need to be spending
    the money for the research for the cure.
        I do not know about how you feel, but we are in a state in
    history right now where baby boomers are aging out, that health
    care is going to be--the costs of health care are going to be
    an issue. And when it comes to brain health, that is one of the
    most important areas that we should be focused on, doing the
    research, looking for cures, looking for therapies, and then
    providing support for caregivers when they have a loved one who
    is dealing with this issue.
        And I have to put a plug in for the Lou Ruvo Center for
    Brain Health that is in Las Vegas.
        Ms. Shriver. The Women's Alzheimer's Movement funds
    researchers at the Lou Ruvo Center and the Cleveland Clinic.
        Senator Cortez Masto. Thank you. And for that reason--and I
    have had the opportunity to sit down with them, and we do not
    have a cure yet, but with the research, we can at some point in
    time. You are right. It is there. It is waiting to be
    discovered. There are doctors there, there are people there
    that are focused on it. So I can promise you this--and I spoke
    to the group that was in my office earlier. This is my
    commitment: to continue to fight for the funding. I do not have
    to tell you, we all agree. We are going to stop and fight
    against any cuts to NIH. But we should be looking for
    additional funding that supports the research and the therapy
    and the support for the caregivers.
        This is such an important issue for all of us but, more
    importantly, for our futures, and I cannot--I do not think that
    the money is wasted. This is an area where we should be taking
    our taxpayer dollars and investing in the future of brain
    health in this country. And so I appreciate you all being here,
    and I just had----
        [Applause.]
        Senator Cortez Masto. I just wanted to make that comment
    and make you aware you have got a partner already in me, and I
    will always be there and supporting.
        Ms. Shriver. Thank you, Senator. I think one of the things
    you said about education, I think that is a huge aspect of
    this, is educating people about the power that exists in them
    to control their health. I think this is a big thing that
    doctors and researchers are talking about precision,
    personalized medicine, trying to understand what works for your
    body, what works for your brain. That is where the future of
    health care is going, right? So that there is no one--as one
    doctor said to me, when my father was diagnosed, ``Once you
    have seen one case of Alzheimer's, you have seen one case of
    Alzheimer's.'' It is a complex disease. But we need to
    encourage people starting in their 20s and 30s to take control
    of their health, to be educated about the pros and cons of
    different treatments, to be involved in their own physical,
    mental, emotional, and spiritual health.
        Senator Cortez Masto. I agree. Thank you. Thank you for
    being here.
        Ms. Shriver. Thank you.
        The Chairman. Thank you very much, Senator.
        Ms. Shriver, on behalf of the entire Committee and everyone
    in this room and all throughout America and, indeed, the world
    who have benefited so much from your advocacy, thank you so
    much for being here today.
        Ms. Shriver. Thank you, Senator.
        The Chairman. You are a powerful voice. Thank you.
        Ms. Shriver. Thank you. Thank you, Senator.
        [Applause.]
        Ms. Shriver. Thank you so much for having me. It has been
    an honor, and I just want you to know how moving it is for me
    to be here amongst all of these incredibly brave and
    inspirational men and women who are taking their own personal
    time to be here to speak to all of you, to visit you in the
    offices. It is one of the most humbling experiences of my life,
    and I have had a lot of different experiences. But to be
    amongst these people who are fighting for their loved ones and
    are fighting for their own health is really an honor and a
    privilege. And I hope that you fund this disease, and I hope
    that Pam Montana and others like her who stand behind her
    become the survivors of this disease.
        So thank you very much for having me.
        The Chairman. Thank you.
        [Applause.]
        The Chairman. We are now going to move to our second panel
    of witnesses, and we thank you again so much for appearing
    today.
        [Applause.]
        The Chairman. Our first witness on the second panel is Dr.
    Kristine Yaffe. Dr. Yaffe is vice chair of research in
    psychiatry at the University of California, San Francisco,
    School of Medicine. She serves as a professor of psychiatry,
    neurology, epidemiology, and biostatistics. In other words, she
    knows everything.
        [Laughter.]
        The Chairman. She is also chief of neuropsychiatry at the
    San Francisco VA Medical Center. In 2014, she was recognized as
    one of Thomson Reuters World's Most Influential Scientific
    Minds.
        Next I am going to turn to my colleague Senator Donnelly to
    introduce Dr. Christopher Callahan.
        Senator Donnelly. Thank you, Chairwoman Collins.
        It is my pleasure to introduce a fellow Hoosier, Dr. Chris
    Callahan, from Indiana University. Dr. Callahan is the founding
    director of the IU Center for Aging Research and has over 25
    years of experience studying new models of care for older
    adults. He is also a professor at the IU School of Medicine, a
    research scientist in the Regenstrief Institute, and director
    of the Eskenazi Office of Applied Research. His work focuses on
    improving the ways that we care for people living with
    dementia, depression, and other similar conditions.
        Dr. Callahan was part of the team that conducted the first
    randomized controlled trial of collaborative care for patients
    living with Alzheimer's. He has since led several other
    clinical trials designed to improve care for older adults with
    Alzheimer's, and he continuously seeks to develop models of
    care that integrate family, community, and medical
    professionals.
        Despite improvements in recent years, many challenges still
    remain to providing quality care to all people with
    Alzheimer's. Medical workforce shortages impact access to care,
    new and innovative models can be expensive to implement, and
    rural Americans can find themselves far from the resources they
    need. Dr. Callahan has been acutely aware of these challenges,
    and his research is helping improve the way we care for people
    with Alzheimer's and ensure that quality treatment becomes
    widely available.
        Dr. Callahan, I want to thank you for your important work.
    We are so proud of you and everything you are doing, and we are
    very, very glad to have you here today. Thank you for being
    here, sir.
        Dr. Callahan. Thank you very much.
        The Chairman. Thank you.
        And now I would like to turn to our Ranking Member, Senator
    Casey, to introduce our witness from Pennsylvania.
        Senator Casey. Thank you, Madam Chair.
        It gives me great pleasure to introduce a fellow
    Pennsylvanian. I made reference to Phyllis Gallagher in my
    opening statement today. Phyllis is a caregiver. She lives
    today in Frackville. Schuylkill County, correct? Phyllis, I was
    late for the hearing, and I did not have a chance to say hello
    to you personally, but we are really grateful you are here.
        Phyllis, like so many in the audience, cares for her loved
    one, in this case her husband, John. John is a former
    Pennsylvania State employee. So am I. And we are grateful that
    Phyllis is here to talk about the challenges she and her family
    have faced.
        John began showing symptoms of early-onset dementia when he
    was just 49 years old. That was 9 years ago. Phyllis cared for
    John at home for as long as she could, and John had to
    transition to a residential facility. In addition to caring for
    John, Phyllis is an advocate for individuals living with
    Alzheimer's and their caregivers. I am very grateful she is
    able to be with us today to share her family's story.
        Phyllis, thank you.
        The Chairman. Thank you very much, and we will start with
    Dr. Yaffe.

    STATEMENT OF KRISTINE YAFFE, M.D., SCOLA ENDOWED CHAIR AND VICE
      CHAIR; PROFESSOR, DEPARTMENT OF PSYCHIATRY, NEUROLOGY, AND
     EPIDEMIOLOGY AND BIOSTATISTICS, UNIVERSITY OF CALIFORNIA, SAN
    FRANCISCO; AND CHIEF, NEUROPSYCHIATRY, SAN FRANCISCO VA MEDICAL
                   CENTER, SAN FRANCISCO, CALIFORNIA

        Dr. Yaffe. Thank you, Chairman Collins, Ranking Member
    Casey, and members of the Committee, for the opportunity to
    testify today about one of the most important issues of our
    time: Alzheimer's disease. This has really been a remarkable
    afternoon so far.
        Alzheimer's disease is a brain disease and the most common
    cause of dementia, a syndrome of cognitive changes usually
    associated with aging. Alzheimer's results in memory and other
    cognitive symptoms from a complex accumulation of proteins,
    including beta-amyloid and tau, that leads to the death of
    nerve cells. Despite tremendous advances in brain science over
    the past few decades, there is still so much to learn. It is
    unclear why some people get the disease and others, who have
    may have evidence of the proteins, do not get the disease.
    Furthermore, despite great effort, we still do not have good
    treatments.
        What we do know for sure is that Alzheimer's disease is
    devastating. As you heard from others, it carries a tremendous
    toll on the patient, the caregiver, our health care system, and
    society. We need to change this trajectory through the
    development of effective treatments and, ideally, prevention.
        One of the most conceptual and interesting changes in the
    field over the last few years is we now know it takes decades
    for the abnormal proteins to develop. Therefore, we have the
    opportunity to prevent, even before symptoms--to delay or even
    prevent Alzheimer's. We are finally in a position to study
    this, and this has evolved into two very important strategies:
    one, studies of risk factors that might be modifiable; and,
    two, studies of new drugs for people at risk.
        There is emerging evidence that several factors may
    increase the likelihood of developing Alzheimer's in addition
    to genetics. Many of these risk factors are modifiable and good
    targets for both individual and public health strategies.
        One of the things we have learned--and Senator Casey
    referred to--is that what is good for the heart is good for the
    brain. Why is that? That is because some of the same issues,
    like hypertension, diabetes, high cholesterol, also affect the
    risk of Alzheimer's. We think there is about a 50-percent
    increased risk of developing Alzheimer's with these factors.
    The exact mechanism is still to be worked out, but most likely
    it is an effect on the blood vessels and also increasing the
    protein amyloid.
        Several trials are underway to see if diabetes,
    cholesterol, and blood pressure medications may actually
    protect against developing cognitive impairment, but we need
    more research to understand how and when these heart health
    factors may impact brain health. We heard from Ms. Shriver that
    it may actually be important to intervene earlier in life, in
    the 20s and 30s, not waiting until somebody is 70s and 80s, a
    very important issue.
        The concept of cognitive reserve has also been proposed as
    an explanation for why some people are able to tolerate the
    brain changes with Alzheimer's and yet others cannot. This is
    this idea that maybe even with the brain changes you can
    tolerate and do not have symptoms, and it is exciting because
    now we have some opportunities to maybe promote resistance to
    Alzheimer's. Factors that contribute to cognitive reserve
    include physical activity, education, and cognitive
    stimulation. Studies support this idea that being more active,
    both in body and in mind, may prevent Alzheimer's. But more
    work is needed before making definitive conclusions.
        Traumatic brain injury, TBI, is a common condition that
    peaks in early adulthood and actually has a second peak later
    in life. Many studies have reported that moderate and severe
    brain injury increases the risk of dementia, but there is much
    less known about more mild TBI, otherwise called
    ``concussion,'' and whether this also increases risk of
    dementia. The studies are much more controversial. So, clearly,
    we need more research in this area as well.
        An area of recent discovery has been the connection between
    sleep and Alzheimer's. This is a fascinating area of
    investigation. It suggests that during sleep, proteins are
    cleared out from the brain. We do not really know what sleep is
    doing, but maybe it clears out the proteins. Therefore, if
    sleep is disrupted due to sleep apnea or insomnia, the proteins
    might accumulate and lead to greater chance of Alzheimer's. We
    do not know if treatment of sleep disorders might improve
    Alzheimer's or delay it, but many are interested in exploring
    this.
        Some argue that these modifiable risk factors will never
    cure Alzheimer's. For this, it is clear that we do need better
    drugs. However, because these lifestyle factors are so common
    and can be changed--and without side effects--we could have a
    big effect on both the individual and society. Studies suggest
    that if people could reduce these risk factors by a modest
    amount--say 10 to 25 percent more physical activity, or 10 to
    25 percent better hypertension control--we could see a big
    effect on the downstream effect of the number that develop
    Alzheimer's. Many countries have conducted trials in which
    these factors are addressed in combination, and preliminary
    results look quite good. We need to have such trials in the
    U.S.
        There has also been tremendous interest in developing more
    effective drugs for Alzheimer's to see if these may prevent the
    disease. In the U.S., there are four ongoing pharmacological
    trials testing possible prevention of Alzheimer's for people at
    risk for the disease, either because of genetics or evidence of
    the protein accumulation, but they do not have symptoms. These
    trials are critical in order to identify better treatments as
    early in the disease as possible. Most of them target the
    accumulation of abnormal proteins, and in this way, it may be
    possible to prevent or delay the disease.
        Some experts, including myself, think that someday
    Alzheimer's will be like chronic heart disease with several
    available drugs that treat different aspects of the disease. It
    will not be the devastating diagnosis it is today but something
    that can be slowed and treated. In addition, these drugs will
    be combined with lifestyle modifications. Clearly, in order to
    do this, we need more research. While the field has come a
    remarkably long way from when, just a few decades ago, people
    thought dementia was normal aging, we still have a long way to
    go.
        In 2011, the bipartisan National Alzheimer's Project Act
    that you, Chairman Collins, co-authored became law and provides
    hope to conquer Alzheimer's. I urge you to support the fiscal
    year 2018 bypass budget, and I thank you for all your interest
    and time and all that you do.
        The Chairman. Thank you so much for your very interesting
    testimony.
        Dr. Callahan.

     STATEMENT OF CHRISTOPHER M. CALLAHAN, M.D., DIRECTOR, INDIANA
        UNIVERSITY CENTER FOR AGING RESEARCH, AND INVESTIGATOR,
           REGENSTRIEF INSTITUTE, INC., INDIANAPOLIS, INDIANA

        Dr. Callahan. Good afternoon, Chairman Collins and Ranking
    Member Casey. I also want to thank Senator Donnelly for that
    very warm introduction. And thanks for the opportunity to speak
    with you today.
        I am going to talk a little bit about some exciting work on
    new models of care, but I want to talk first about how care can
    go really terribly wrong for people with Alzheimer's disease.
    And I want you to imagine for a moment your elderly widowed
    mother. Maybe she is 76 years old, and she appears to enjoy
    wonderful health. But maybe you have noticed some things. Maybe
    you have noticed an accident in the kitchen or maybe an
    accident in the car. Maybe you have noticed her repeating
    herself. But she seems happy, and she maintains a clean home,
    which you help out with. And so you keep your concerns to
    yourself.
        Then you get a call from the neighbor, and the neighbor
    says your mom walked into their home last night and was rude
    and disheveled. And as you investigate further, you find that
    your mom's finances are in a shambles. Her bank accounts have
    been drained by a heartless scammer. She has overdue utility
    bills. You take her to visit with her physician, and he says he
    saw the signs, but he did not want to break her spirit.
        Later that year, she falls and fractures her hip. She seems
    to be ping-ponging between the hospital and the nursing home.
    She is on a dizzying array of medications and also bouncing
    between doctors. And you feel completely alone.
        I know stories like this will be played out multiple times
    this year and in coming years. And while that story is tragic,
    I am certain that someone behind me can tell a story that is
    much more tragic.
        It does not have to be this way, and that is what I was
    asked to talk about. To make the journey of Alzheimer's disease
    less painful, we all have to do better. Good care for failing
    brains begins with an early and an accurate diagnosis. Many
    things can look like Alzheimer's disease, and it is easy to
    dismiss the early signs. But a failing brain is not normal
    aging. Once a patient receives a diagnosis of dementia, there
    is a complex road ahead. We have to give the caregiver
    education and support as well as the care recipient. There is a
    lot of decisionmaking in front of them. There are treatments to
    consider and lots of care planning, including financial
    planning.
        People need to know their new vulnerabilities and the
    services and supports that are available to them. But now there
    are road maps. Research on models of care that has been funded
    by the NIH, the VA, AHRQ, the Hartford Foundation, the Center
    for Medicare and Medicaid Innovation. They show that we can
    improve care. New models of care integrate the health care
    system with our community and our social support services.
        I am going to give just one example of this research.
    Scientists at Indiana University tested an approach known as
    the ``Collaborative Care Model'' that Senator Donnelly alluded
    to. That model provided primary care physicians and their
    patients with enhanced screening and a companion diagnosis
    program. For patients diagnosed with dementia, the model
    provided care management through an interdisciplinary team.
    That team was led by an advanced practice nurse working with
    the patient's family and integrated with primary care.
        Families were referred to the Alzheimer's Association to
    get the support that is already available there. Both patients
    and family caregivers in that study had improved symptoms, they
    were more satisfied with the care, and they were less likely to
    receive harmful drugs. Similar models have been tested at UCLA
    and Johns Hopkins among many other places.
        In a report published just this month in Health Affairs,
    using another model, also a nurse-led intervention for persons
    with dementia in the nursing home, they showed that they could
    decrease unnecessary hospital use and they could decrease
    overall Medicare costs.
        The sad news is that these models are not reaching the
    millions of Americans who could benefit. Older adults in rural
    America are often hundreds of miles away from even basic
    services. The main problem is an inadequate workforce.
        New models of care need to expand the reach of our limited
    physician workforce. This might include training nurses, social
    workers, or other professionals to provide these services.
    However, even that workforce is inadequate, as the Institute of
    Medicine has documented. Our country needs a very large
    increase in the number of direct care workers who can provide
    hands-on care for older adults with Alzheimer's.
        I will end by saying, though, if there is one reality that
    I could best highlight, it would be this: Family caregivers are
    the hands, the backbone, and the heart of the Nation's
    workforce for Alzheimer's disease. This will not change over
    the next 25 years. Family caregivers will sacrifice their
    sleep, their health, their finances, their careers, and their
    friends to provide care in the home for as long as possible for
    their loved one with dementia. They will do it, but they should
    not have to do it alone. So often, we hear family caregivers
    say at the end of their draining 10-year journey that they wish
    they knew then what they know now. The best way to help persons
    with dementia is to help their family caregivers.
        Thank you.
        [Applause.]
        The Chairman. Thank you very much for your testimony,
    Doctor.
        Mrs. Gallagher.

     STATEMENT OF PHYLLIS GALLAGHER, FAMILY CAREGIVER, FRACKVILLE,
                              PENNSYLVANIA

        Ms. Gallagher. Thank you, Chairman Collins, Ranking Member
    Casey, and members of the Committee, for the opportunity to
    testify today on the toll of Alzheimer's and other dementias.
    As a caregiver for my husband, John, I hope my story will shed
    some light on the reality of this cruel disease.
        My husband, John, and I have been happily married since
    1993. John is the nicest, kindest man. We had fun together.
    Prior to his diagnosis, John was healthy as a horse, 6-foot-2,
    260 pounds, and he went to the gym every day. He ate well,
    though he is a good Irishman and did enjoy a beer here and
    there. John worked in the Pennsylvania State Capitol in a job
    he enjoyed. He was very social and was living a full life.
        After his father passed away in 2008, I started to notice
    that John was having a harder time finding his words. As we
    would later learn, this was the start of our journey with
    Alzheimer's. And John was only 49 at the time.
        We started with our primary care doctor, who thought John
    might be suffering from a stroke or depression and anxiety
    following his father's death. When John did not get better, we
    went back to the primary care doctor 6 months later, which was
    then followed by a visit to a local neurologist. We had no new
    answers, and months went by as John continued to struggle with
    his speech and was showing more erratic behaviors. John was
    physically healthy. It was his brain that was not.
        After months of unanswered questions and new combinations
    of medications to address the symptoms, John started seeing a
    psychiatrist. The psychiatrist was the first one to suggest
    that these symptoms could be memory-related. I tried to get
    John in to see a specialist at several facilities in
    Pennsylvania, but each of them had a 6-month wait. The Memory
    and Alzheimer's Treatment Center at Johns Hopkins had a 3-month
    wait, so that is where we went. If there were more trained
    specialists in this field, we might not have had to wait so
    long or travel so far to see someone.
        After our 3-month wait, John and I made the first of what
    would be many drives from our home in Frackville, Pennsylvania,
    to Baltimore, Maryland, for John to have a full neurological
    work up at Johns Hopkins. The team at Hopkins wanted to use a
    PET scan as part of their diagnostic process, but,
    unfortunately, it was not covered by our insurance. After a
    wave of testing, John was officially diagnosed with Alzheimer's
    disease.
        He retired from his job in March of 2012, and we decided to
    do what we could to help the next person going through this
    disease. It was extremely important to both of us that we not
    be complacent. We got involved with our local Alzheimer's
    Association chapter. We walked together in the Walk to End
    Alzheimer's. John participated in several research projects at
    Hopkins and in one of them was finally able to get that PET
    scan. He also decided that he wanted to donate his brain to
    research after he dies. As John put it, ``They might not be
    able to help me, but what if my girls get it?''
        We also decided to live our lives fully while John still
    could. We went to Ireland for our big bucket list trip. We went
    out a lot with friends. We made regular trips to New York to
    see his oldest daughter. I did anything to make him happy in
    the course of this, and we had as much fun as we could.
        That does not mean we did not face our share of challenges.
    As time went on, John always needed supervision. If I needed to
    take a shower, I would have a neighbor come over to watch him.
    I would do things around the house at night while he was
    sleeping. And the first time you have to help your spouse in
    the bathroom is traumatic, and people do not tell you about
    that.
        Because of his age, John was not eligible for many programs
    available to people with Alzheimer's. Many of these programs
    are only for people over the age of 60. Or they are aimed at
    people with physical disabilities. I could get help if he had
    lost a limb, but I could not because of dementia. If you cannot
    find someone to help you, you are stuck. I was able to get John
    into an adult day program two to three afternoons per week. And
    what a relief that was. I could go grocery shopping or run
    other errands without worrying about John.
        The difficulty in communicating was a surprise. When he
    could not find his words or had trouble speaking, we had to
    communicate through what I came to call ``Charades of the
    Gallaghers.'' We had as much fun as we could in such dire
    circumstances.
        After John's diagnosis, we talked a lot about what he
    wanted as the disease progressed. We talked about the
    likelihood of John needing to be in a nursing home one day and
    planned his funeral. I remortgaged our home, hoping to care for
    him at home as long as I could. We renovated our first floor to
    include a full bath and a laundry room and to make the home
    handicap-accessible to anticipate his future needs.
        Medicaid helps to cover the cost of John's nursing home,
    but I still pay $1,850 a month out of pocket. That means that I
    do not go out unless a friend can pay for me. I work with a
    limited grocery budget. I participate in activities that do not
    cost money so that the resources I do have can go to my
    husband's care.
        When someone has Alzheimer's, it is not just the person who
    gets sick. It is the whole family. The disease takes a toll on
    a community of people. Without our friends, family, and
    neighbors, I would not have been able to care for John.
        John and I believe that you cannot just sit around go and
    ``boo-hoo.'' You have to do something. That is why I wanted to
    be here today and why I participated in the Alzheimer's
    Association Advocacy Forum for the first time this year.
        This week, I joined 1,300 advocates from across the country
    to make a difference here in Washington. We are here to speak
    on behalf of the 5.5 million Americans living with Alzheimer's
    today, to advocate for their care, and to fight for more
    research funding. Alzheimer's is a fatal disease with no means
    to prevent, cure, or even slow its progression. Investing in
    research is the only way to change that.
        Alzheimer's research is currently funded at $991 million
    annually, but the scientists at the National Institutes of
    Health say they need more to make progress toward ending this
    disease. Researchers at the NIH asked for an additional $414
    million for fiscal year 2018. As a caregiver and advocate, I am
    respectfully asking Congress to fulfill that request.
        Today John is 58 and in the end stages of Alzheimer's. This
    disease has ravaged our family, but that does not mean we have
    to give up hope. Something positive has to come out of this. It
    is inspiring to be here on Capitol Hill for the first time with
    so many others like me, and we all are counting on you to take
    action so we can, once and for all, end Alzheimer's.
        [Applause.]
        The Chairman. Thank you.
        [Applause continues.]
        The Chairman. Mrs. Gallagher, you are getting a standing
    ovation. Thank you so much for that heart-wrenching yet
    inspiring testimony and for sharing your personal story with
    us.
        Ms. Gallagher. Thank you.
        The Chairman. Dr. Yaffe, you talked about the potentially
    major impact that lifestyle changes could have on the incidence
    of Alzheimer's disease. Why would exercise and diet have an
    impact on the accumulation of beta-amyloid plaque or tau in the
    brain? What is the theory?
        Dr. Yaffe. I will try and be succinct. It is a great
    question. Some of these lifestyle factors most likely work by
    decreasing the amount of amyloid production. A good example
    might be with sleep, for example, where we know there is this
    complex interaction between sleep and actually the amyloid
    accumulating. Other factors probably act in a more indirect way
    by enhancing reserves, so making the brain more resilient to
    the fact that there might be amyloid already there.
        We think with physical activity it is probably a multi-
    pronged effect. There have been beautiful studies showing that
    the hippocampus actually increases with physical activity, and
    the hippocampus is the part of the brain most relevant for
    learning and memory. So there is something going on when people
    actually exercise. We think it is probably new neurons, new
    connections.
        So it is a fascinating, fascinating area of explanation. We
    do not have all the answers, but there is a lot of really
    interesting clues. And so it sounds like, oh, just do a good
    diet or do this or do that. But most of the things that I chose
    to discuss are the things that I think have the best evidence
    and actually have a lot of biology explaining why they may
    work.
        The Chairman. Is there evidence that a Mediterranean diet
    also may have an impact?
        Dr. Yaffe. Yes, so I did not discuss diet as much because I
    had a limited amount of time. I would say that the area of diet
    is a very interesting one, a lot of interest in it, but not as
    much work that we know so far. So the idea that single
    nutrients, say vitamins or omega-3, those have been studied and
    have not worked out so well. The field is now shifting towards
    more of a pattern of diet, as you allude to, a Mediterranean
    diet, a healthy diet, where it is not just one nutrient but the
    whole shebang. And that is looking much more promising, but,
    again, we still need more work to know, I think, definitively.
        The Chairman. There have also been clinical trials with
    drugs that have been able to clear some of the plaque tangles
    from the brain, and yet it appears that it did not restore
    cognitive function. Do you have a theory about why that is the
    case?
        Dr. Yaffe. You know, that is not exactly my expertise, but
    I know somewhat about it.
        The Chairman. You know more than we do.
        [Laughter.]
        Dr. Yaffe. I have been impressed with your knowledge.
        I think there has been a lot of hope that if you can get
    rid of the amyloid in the brain that is the target of many of
    these drugs, that might then improve cognitive function and
    delay/prevent Alzheimer's.
        It looks very promising, but we are not there yet. So some
    of the trials have either had to stop because of side effects
    or they did not work as well as they did in the animal models,
    again, showing us that the brain, I think, is much more complex
    than we thought and that this is just going to take more work.
    But I think we are on the right track.
        The Chairman. Thank you.
        Dr. Callahan, so many older individuals rely on their
    doctors as a trusted source of information and counsel, and you
    have underscored the critical role that primary care physicians
    can play. Yet you have also suggested in your testimony that
    the overwhelming majority of primary care doctors and other
    allied health professionals have completed little or no formal
    training in providing care for people with dementia and
    advising their caregivers as well.
        With that in mind, I am concerned by the President's
    proposed budget cut to the Geriatrics Workforce Enhancement
    Program because we know, as you illustrated, that there is a
    real shortage of trained individuals who can help caregivers or
    even act as caregivers. This is the only Federal program that
    supports the education of doctors, nurses, physician's
    assistants, pharmacists, social workers, and many other health
    professionals who choose to serve our Nation's seniors.
        How might these cuts affect the supply of health care
    professionals who complete training in geriatrics?
        Dr. Callahan. Well, one of the sad parts about this, as you
    mentioned, is that this is one of the few programs left in
    order to help support the training, and what people may not
    know is the Geriatric Workforce Enhancement Program is not just
    focused on physicians. It is focused on nurses and social
    workers and other care providers as well.
        We are lucky at Indiana University in the State of Indiana
    that we have a Geriatric Workforce Enhancement Program, and it
    is the singular place also where we can teach doctors how to
    work in a team. People do not necessarily know how to work in a
    team. They were not necessarily trained to work on these
    interdisciplinary teams. They do not know that there is a lot
    that the nurse working alongside of them could do or the social
    worker working alongside of them could do.
        So the Geriatric Workforce Enhancement Program is almost
    like, well, this is one of the few things left. Why would you
    want to get rid of it? So it is very important, and it is
    exactly the kind of program that we are talking about also that
    can reach providers who have already left their formal
    education, because we can go out into their offices and in the
    places where they practice and show them how to redesign their
    practices.
        The Chairman. Thank you.
        Mrs. Gallagher, I am not asking you questions because I
    know my colleague Senator Casey is going to ask you a lot of
    questions, but, again, I want to tell you how moved I was by
    your testimony.
        Ms. Gallagher. Thank you. Thank you for having me.
        Senator Casey. Madam Chair, thank you very much.
        And, Phyllis, thank you, and I reiterate those expressions
    of gratitude. I cannot even imagine what you have been through,
    like so many members of this wider family in the audience.
        I guess one question I had was you mentioned that there
    were times when you were not, you did not think you were
    prepared for what was happening or you had to provide a kind of
    care that you may not have had much training in or warning
    about. Anything in particular you would hope that we would be
    able to tell people as they are embarking on a caregiving
    mission, what you did not hear that you would hope that others
    would?
        Ms. Gallagher. Well, my mother had Alzheimer's at 80, and
    with John having it at 50, I did not even realize that could
    have happened, so I think educating the public in general. I am
    technically an artist, so believe me, being a caregiver was not
    exactly in my field. But as a wife, that is what you do. So I
    did anything I had to. But it would have been easier even to
    just find help. I called the Agency on Aging in the county and
    was told, ``He is under 60. We cannot help you at all,'' and
    that was that. I was, like, ``Okay, well, now what do I do?''
        So then, thankfully, there was the Alzheimer's Association,
    and they helped. Their 24-hour hotline got called frequently at
    2:00 a.m. by me. Also, there are various support groups online,
    which I found very, very helpful to just talk to others in my
    position, because throughout, especially when some of the
    support groups are international, so there is always someone
    awake that you can talk to. So it did not matter what time of
    day, and hopefully within the group someone had a somewhat
    similar experience.
        But even my experience between my mother and my husband was
    very different. So, you know, each case is different.
        Senator Casey. And I do not want to bring you back to times
    that have been particularly difficult, but it is helpful for us
    to be able to hear direct testimony about what you have had to
    live through. What is the most difficult part, just in terms of
    the--in addition to the obvious difficulty of accepting a
    terrible diagnosis?
        Ms. Gallagher. The acceptance, the friends and family,
    because you have some people who go away. You know, it is not
    contagious, but sometimes you feel like, ``Are we contagious?''
    You know? And you learn who your friends are, and that was one
    thing.
        You are so alone is the other. You are very, very much
    alone. And then you are so busy taking care of them that, you
    know, your day--and you have got to feed them, and sometimes it
    would take from 7 o'clock in the morning until noon just to
    have him bathed and dressed. And then it is noon, and now it is
    time to feed him again. So you do not get that time. And to get
    a break is very difficult, to find someone, especially at our
    age, because we do not have that many peers who were retired,
    to, say, ``Hey, if you have nothing to do, come on over and sit
    with him?'' So that was hard. I was lucky I had very good
    friends, and I had a wonderful neighbor across the street who
    helped me a lot, especially in a pinch. She was a stay-at-home
    mom. So I was thankful that she was there a lot to help me. And
    my husband's best friend helped us. Every Monday he sat with my
    husband so I could go to therapy, and therapy is a godsend for
    me. My husband also went to therapy when he was first diagnosed
    as long as he could still communicate. He went also to deal
    with the issues that we both had, you know, stress-wise, mental
    health-wise. And I found that to probably be the most important
    thing in my life, was the help I got from the therapist.
        Senator Casey. I appreciate you sharing that testimony
    because it is helpful for us.
        The last question I have is simple, just your health care
    coverage. Did you have the benefit of the State Employees?
        Ms. Gallagher. You bet. Thankfully, because that covered
    therapy, covered everything but the PET scan. I was going to
    get a loan for the PET scan because that was $16,000, and John
    said, ``Why?'' So then the doctors at Hopkins thankfully had a
    research project that involved PET scans, and that is how John
    got his PET scan.
        Senator Casey. Thank you. I am out of time, but thank you
    very much.
        The Chairman. Thank you, Senator Casey.
        Senator Warren?
        Senator Warren. Thank you, Madam Chair, and thank you all
    for being here. And thank you, Madam Chair, for the work you
    have done to draw attention to this crisis in America.
        This disease is tremendously painful for families who live
    through the horrible experience of losing a loved one through
    it. This disease is also wildly expensive. I know that the
    Chair talked about this. The United States spends $259 billion
    a year on health care related to Alzheimer's disease, including
    $175 billion for Medicare and Medicaid. And yet NIH spends less
    than 1 percent of that amount on Alzheimer's research every
    year.
        [Applause.]
        Senator Warren. Breakthroughs will not happen if we are not
    funding our scientists and keeping in the fight as they push
    every day to make progress. So let me see if I can just ask a
    couple of questions around this.
        Dr. Yaffe, you started your work on cognitive decline more
    than two decades ago. Do we know more about dementia in older
    adults today than we knew when you first started 20 years ago?
        Dr. Yaffe. No question, yes.
        Senator Warren. All right.
        Dr. Yaffe. Absolutely.
        Senator Warren. And what role have NIH grants played in
    your ability to stay in this fight? How many have you received
    over your career?
        Dr. Yaffe. Gosh, I have probably gotten about 15 that I was
    the lead for and then maybe another, you know, 15 or 20 where I
    was a co-lead. Obviously, it has been instrumental for me. I
    could not be doing what I am doing without NIH funding. It is
    by far the most important funder for research, medical
    research, you know, by far.
        I want to say it is particularly important for young
    people. We are talking about the importance of the geriatric
    workforce, but we also need to talk about the importance of the
    physician scientists and scientists in general who, once they
    finish their training, they are expected to then get a grant,
    often a career development award, so that they can get from
    their training stage to their independent stage. This is
    critical, and it is critical that the NIH fund this because,
    otherwise, people are not going to go into science.
        Senator Warren. We will lose our researchers if we do not
    fund them.
        Dr. Yaffe. And, in particular, it is the physician, the
    clinician scientists who have one hand in with patient care and
    understand the clinical issues, and then the other trying to
    solve this problem. I cannot tell you, having served on the
    review committee for this at the NIA, one of the committees,
    you saw wonderful people who just did not quite get a good
    enough score, and you had a feeling they were not going to be
    able to stay in science. So I cannot emphasize enough the
    importance particularly for that transition period.
        Senator Warren. That is very important. And if I can ask
    you, Dr. Callahan, you work in a very different type of
    research than Dr. Yaffe. Your research examines how to improve
    the care that older adults with dementia and depression receive
    from their primary care physician. Dr. Callahan, has support
    from NIH also made a difference in your work?
        Dr. Callahan. Well, much like Dr. Yaffe said, I would not
    be here without NIH funding. I think one of the things that we
    sort of watch as we are marching along is originally the NIH is
    funding you as an untested junior scientist with career
    development awards and with an opportunity to go in a very
    different direction. So they are investing in you, but they are
    holding you in science through their support. When that is
    successful, then we move on to independent grant funding. But
    then the NIH also funds program development at our
    universities.
        So, for example, Indiana University had an Edward Roybal
    Center, and with the Roybal Center then, again, we splinter
    off, we are able to attract even more young people from a wider
    discipline. So at each stage in a person's career, you need the
    NIH to consistently be there.
        Senator Warren. And I am about to run out of time, but with
    the Chair's indulgence, I just want to ask you, Ms. Gallagher,
    I know that caring for your husband was a tremendous
    responsibility and how painful it must be for you to know that
    scientists will not be likely to come up with help in time, but
    that you are still here arguing, advocating on behalf of future
    Alzheimer's patients and their families and caregivers. Can you
    just say a word about the importance of research as you see it
    and funding the NIH?
        Ms. Gallagher. We need help. We need help, we need a cure.
    I am worried about my husband's two daughters. The oldest is
    32, and I sure would hate to think that she only has 15 good
    years left. I would hate to think that. She has a 6-month-old
    and a 3-year-old. So I hope to God that my grandkids and that
    my kids do not have to worry about this. So there has to be
    research.
        And just to go through, it is a life of almost daily
    torment of what you have to go through to keep, you know, just
    everyday life. And it is absolutely necessary. It is just
    amazing. It needs to be cured, and it needs to be cured, you
    know, as soon as possible.
        [Applause.]
        Senator Warren. Thank you. And I will just be blunt on
    this. We need more money for NIH, not less.
        Ms. Gallagher. Yes.
        Senator Warren. We need more money for NIH. Thank you,
    Madam Chair.
        [Applause.]
        The Chairman. Thank you.
        Senator Donnelly?
        Senator Donnelly. Thank you, Madam Chair.
        To all of you, to Mrs. Gallagher, God bless you in what you
    are doing. It is God's work in every way, shape, and form. And
    to Dr. Yaffe, thank you so much for your work. And to Dr.
    Callahan, we are so proud of you. You are doing such
    extraordinary things. And as you know, we have a large rural
    population in our State as well, and you shared that rural
    Americans often live miles away from necessary services and
    have difficulty accessing the care they need. Could you
    elaborate a little bit on the challenges that face rural
    Americans with Alzheimer's and what we can do to ensure that
    everyone with Alzheimer's, rural or not, has access to care and
    access to help?
        Dr. Callahan. Yes, about one out of every five people with
    Alzheimer's disease is in a rural area, and if you think about
    how--so all day we have been hearing about how caregivers feel
    alone and the care recipients feel alone. You cannot really get
    much more alone than being a caregiver of Alzheimer's disease
    in a rural area. It is the lack of services. We have heard
    about today that it is the drive. I mean, it is a lot of work
    to take a loved one with Alzheimer's disease, you know, put
    them in a car, drive them 50 miles, and then all of the things
    that could go wrong in that transportation event.
        The other problem that we have is that we have heard about
    the importance of neighbors and community and church, and
    sometimes even those are farther away in the smaller
    communities.
        So what people have been trying--Minnesota has been
    innovative this way and Wisconsin has been innovative this
    way--is to look at technologies. This has been true for a lot
    of rural health. Could you use technologies to try to reach
    people? We heard Mrs. Gallagher say how she was--you know, you
    can connect on the Internet as long as it is not somebody
    trying to cheat you or steal from you.
        But these services, I think we also have to really
    reimagine the workforce. Who is it that is in that community
    already that we could train to help out, even if it is only to
    come and visit someone for an hour or two? It is a very special
    challenge.
        Senator Donnelly. It is an incredible burden for that
    caregiver, isn't it, at the end of the day? Is there almost
    like a feeling of being overwhelmed at times?
        Dr. Callahan. Absolutely, and you hear these terrible
    stories. There are, you know, stories of a husband who is
    worried about his wife wandering, and so he ties the two of
    them together with a string. But what else is he going to do?
    Because she gets up at night and wanders. Or sad stories where
    people actually are locking people in because they have run out
    of options. There is no one to call anymore.
        And then, again, in terms of costs, who are you going to
    call? I mean, when you are finally at wits' end, you end up
    calling 911. You know, it was not an EMT and a paramedic that
    you needed. It was, you know, a direct care worker who could
    help you in the moment and maybe just, you know, to give a
    bath.
        So it is an incredibly lonely experience to be a caregiver
    in a rural area. And I do not mean to leave the care recipient
    out. It is hard for them as well.
        Senator Donnelly. Dr. Yaffe, you noted that in many other
    countries they have conducted multidomain trials to study the
    impact of several factors together on reducing the risk of
    Alzheimer's. Is there a reason why these trials have not yet
    been conducted here in the United States?
        Dr. Yaffe. I think there has been a lot more interest in
    lifestyle and modifiable factors in Europe, in Canada, and
    Australia, for example. I think the U.S. tends to be a little
    bit more focused on Pharma and technology, and so I think that
    is one of the big reasons why.
        I think the tide is turning, and, actually, I have put in a
    grant to hopefully be able to do such a trial in the U.S. And I
    think there is growing interest, so I am optimistic that we
    will be part of this research direction as well.
        Senator Donnelly. Well, I want to thank the panel. I want
    to thank you all for your courage and for your devotion to
    others in the work you do every day.
        Thank you, Madam Chair.
        The Chairman. Thank you very much, Senator.
        I want to thank all of our witnesses today for your
    powerful testimony and for the important work that you do each
    and every day.
        My thanks also to all the advocates who are here, storming
    Capitol Hill, making the case, arguing for more funding that
    will lead to effective treatments, a means of prevention, and
    ultimately a cure.
        We are making advances in understanding the arc of
    Alzheimer's from prevention to cure, and yet that arc is long,
    and we have a long ways to go.
        We know that every 66 seconds someone in our country is
    diagnosed with Alzheimer's disease, and ending this trend has
    to be an urgent national priority. We know that we can do
    better. We can do better in the way that we care for those who
    are living with Alzheimer's, and we know that we can do better
    in training our medical personnel, and we know that we can do
    better in helping our caregivers who put in an endless number
    of 24/7 days.
        And, most of all, we in Congress can do better in funding
    the vital research that one day will lead to the end of this
    disease or at least a means of managing it as a chronic
    disease, as Dr. Yaffe said.
        Many of you have traveled long distances to Washington to
    share your stories and to advance the fight against
    Alzheimer's. This sea of purple represents hope, and you are
    making waves. So I ask that you keep at it. You are making a
    difference.
        Our Committee members are also committed to this cause. In
    fact, I was thinking as I listened to the testimony today that
    one thing we could do--and I should have talked to you about
    this in advance--is for us to lead a letter, signed--and we
    would hope to get the signatures of every member of the Aging
    Committee--and send a letter to the President in opposition to
    the cuts to NIH's budget, but also to the Geriatric Workforce
    Development Fund, which is also important. And I think it would
    be a really powerful bipartisan step forward if we can get the
    signatures of every member of this Committee. You are in?
        Senator Donnelly. Madam Chair----
        [Applause.]
        Senator Donnelly. I was going to say, Madam Chair, that
    this Zip code down at this end is also in on that plan as well.
        The Chairman. Great. That is great to hear.
        Committee members will have until Friday, April 7th, to
    submit questions for the record.
        Senator Casey, do you have any closing words you would like
    to say?
        Senator Casey. Madam Chair, thank you for calling the
    hearing, again, and also we know why she is Madam Chair now. We
    are grateful for that bipartisan mission that she just gave us.
    So I am in, too, if it was not clear.
        I want to thank the members of the audience who are here
    and so many others who were here for a good part of this
    hearing today. Phyllis, we are grateful you are here, and both
    doctors, Dr. Callahan and Dr. Yaffe, and Maria Shriver.
        I would say to the people in the audience, and so many
    millions like you across the country, I know you may not on
    some days feel like you are overcoming something, you are not
    winning. But in so many ways you are, and you have led in this
    part of your life a quietly triumphant life, and that is much
    to be proud of. And we are grateful you are willing to share
    those stories and that inspiration with us, because in addition
    to the obvious and central role played by funding, your work
    and your stories and your families' stories will help us win
    this battle.
        God bless you, and thank you.
        [Applause.]
        The Chairman. Thank you all again. This concludes this
    hearing.
        [Whereupon, at 4:56 p.m., the Committee was adjourned.]

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                                    APPENDIX

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                          Prepared Witness Statements

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                      Additional Statements for the Record

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