[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
         
         
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                       SPECIAL COMMITTEE ON AGING
                       
                       
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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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