[Senate Hearing 115-685]
[From the U.S. Government Publishing Office]


                                                    S. Hrg. 115-685

                CHANGING THE TRAJECTORY OF ALZHEIMER'S:
      REDUCING RISK, DETECTING EARLY SYMPTOMS, AND IMPROVING DATA

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

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                     ONE HUNDRED FIFTEENTH CONGRESS


                             SECOND SESSION

                               __________

                             WASHINGTON, DC

                               __________

                             JUNE 19, 2018

                               __________

                           Serial No. 115-19

         Printed for the use of the Special Committee on Aging

[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]

        Available via the World Wide Web: http://www.govinfo.gov
                       
                               __________
                               

                    U.S. GOVERNMENT PUBLISHING OFFICE                    
35-283 PDF                  WASHINGTON : 2019                     
          
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                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

ORRIN G. HATCH, Utah                 ROBERT P. CASEY, JR., Pennsylvania
JEFF FLAKE, Arizona                  BILL NELSON, Florida
TIM SCOTT, South Carolina            KIRSTEN E. GILLIBRAND, New York
THOM TILLIS, North Carolina          RICHARD BLUMENTHAL, Connecticut
BOB CORKER, Tennessee                JOE DONNELLY, Indiana
RICHARD BURR, North Carolina         ELIZABETH WARREN, Massachusetts
MARCO RUBIO, Florida                 CATHERINE CORTEZ MASTO, Nevada
DEB FISCHER, Nebraska                DOUG JONES, Alabama

                              ----------
                              
                 Kevin Kelley, Majority Staff Director
                  Kate Mevis, Minority Staff Director
                  
                                CONTENTS

                              ----------                              

                                                                   Page

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

                           PANEL OF WITNESSES

Marcia Gay Harden, Academy Award-Winning Actress and Family 
  Caregiver, Los Angeles, California.............................     6
Lisa C. McGuire, Ph.D., Lead, Alzheimer's Disease and Healthy 
  Aging Program, National Center for Chronic Disease Prevention 
  and Health Promotion, Centers for Disease Control and 
  Prevention, Department of Health and Human Services............     9
Teresa Osborne, Secretary, Pennsylvania Department of Aging......    10
Gareth Howell, Ph.D., Associate Professor, The Jackson 
  Laboratory, Bar Harbor, Maine..................................    12
Cheryll Woods-Flowers, Family Caregiver, Mount Pleasant, South 
  Carolina.......................................................    14

                                APPENDIX
                      Prepared Witness Statements

Marcia Gay Harden, Academy Award-Winning Actress and Family 
  Caregiver, Los Angeles, California.............................    34
Lisa C. McGuire, Ph.D., Lead, Alzheimer's Disease and Healthy 
  Aging Program, National Center for Chronic Disease Prevention 
  and Health Promotion, Centers for Disease Control and 
  Prevention, Department of Health and Human Services............    37
Teresa Osborne, Secretary, Pennsylvania Department of Aging......    48
Gareth Howell, Ph.D., Associate Professor, The Jackson 
  Laboratory, Bar Harbor, Maine..................................    55
Cheryll Woods-Flowers, Family Caregiver, Mount Pleasant, South 
  Carolina.......................................................    63

 
                       CHANGING THE TRAJECTORY OF.
  ALZHEIMER'S: REDUCING RISK, DETECTING EARLY SYMPTOMS, AND IMPROVING 
                                  DATA

                              ----------                              


                         TUESDAY, JUNE 19, 2018

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 2:28 p.m., in 
room SD-106, Dirksen Senate Office Building, Hon. Susan M. 
Collins (Chairman of the Committee) presiding.
    Present: Senators Collins, Fischer, Casey, Gillibrand, 
Donnelly, Warren, Cortez Masto, and Jones.

    OPENING STATEMENT OF SENATOR SUSAN M. COLLINS, CHAIRMAN

    The Chairman. The Committee will come to order.
    Good afternoon, everybody, and welcome to all the advocates 
and families from all across America. We are absolutely 
delighted to have you here.
    I want to explain a little bit why I am the only one 
starting the hearing right now. As luck would have it, 
unfortunately, two roll call votes have just been scheduled, 
and one has just started. So in all of my time in the Senate in 
21 years, I have never missed a roll call vote, and most of my 
colleagues are over voting right now. But I am going to start 
the hearing, give my opening statement. Then we will do a 
recess so that I can go vote, and then when we come back, 
Senator Casey, the Ranking Member, will give his statement. I 
apologize for this interrupted approach to the hearing, but you 
just never know when votes are going to be scheduled.
    One hundred years ago, infectious diseases such as 
pneumonia and tuberculosis accounted for almost half of all 
deaths. Today, because of advancements in public health, we can 
treat and prevent what once were among the most deadly diseases 
in our country.
    Public health saves lives and has proven over the past 
century to extend lives as well. Since 1900, public health has 
added nearly three decades to our life spans. The leading 
causes of death are now chronic diseases including cancer, 
respiratory diseases, and stroke. Alzheimer's disease is the 
sixth leading cause of death in our Nation.
    While we all may be familiar with the role of public health 
in protecting against communicable diseases, advances in public 
health are beginning to change the story for chronic diseases 
as well. For breast cancer, for example, early detection and 
screening save lives. The earlier the cancer is caught, the 
better the prognosis.
    We are here today to explore how we can tap into public 
health to rewrite the future of Alzheimer's disease, just as we 
have done for so many other diseases of the past.
    An estimated 5.7 million Americans are living with 
Alzheimer's, costing our Nation $277 billion a year, including 
$186 billion in costs to the Medicare and Medicaid programs. If 
we continue along this trajectory, Alzheimer's is projected to 
claim the minds of nearly 14 million seniors and surpass $1 
trillion in costs by the year 2050.
    Last year, when this sea of purple last gathered, we 
explored the arc of Alzheimer's from preventing cognitive 
decline to improving care for those living with dementia. We 
learned that there are some modifiable risk factors that may be 
able to slow the progression of this devastating disease. We 
saw that there are models of care that can reduce co-
morbidities, prevent hospitalizations, and improve life for 
those living with Alzheimer's--and for their caregivers. 
Essentially, we sowed the seeds of a public health approach.
    Today, with the start of summer in sight, we are here for 
the harvest. The BOLD Alzheimer's Act, which I co-authored with 
Senator Cortez Masto, would create the public health 
infrastructure we need to combat Alzheimer's and preserve brain 
health. Our legislation would establish Centers of Excellence 
in Public Health Practice dedicated to promoting Alzheimer's 
disease management and caregiving interventions as well as 
educating the public on this disease and brain health in 
general.
    The Centers for Disease Control and Prevention are already 
doing tremendous work to combat Alzheimer's within the Public 
Health Road Map of the Healthy Brain Initiative. The Centers of 
Excellence created by our bill would implement this CDC Road 
Map.
    BOLD would spread the opportunity for communities across 
America to create the capacity to combat Alzheimer's. Our 
legislation would help public health departments take key steps 
including education, early diagnosis, risk reduction, care 
management, and caregiver support.
    Early diagnosis can make a real difference. Earlier 
detection of symptoms would provide individuals and families 
with the opportunity to prepare by planning their finances and 
to find help in navigating the challenges of dementia.
    Early diagnosis also saves money. A new study following 
everyone alive this year shows that diagnosing Alzheimer's 
sooner would yield an estimated total savings of $7 trillion in 
medical and long-term care expenditures. Just as we screen for 
cancer, diabetes, and other chronic diseases, appropriate 
screening for Alzheimer's is the first step to improving 
treatment.
    Finally, at the heart of public health are data. BOLD would 
direct the CDC to expand its data collection of cognitive 
decline, caregiving, and health disparities.
    Today the BOLD Act has 35 cosponsors, but I know by the 
time the members of this audience are finished with all their 
Hill visits that we will be up to 50, the challenge I gave you 
last night.
    [Applause.]
    The Chairman. Or better yet, 60, the number that assures 
Senate passage.
    [Applause.]
    The Chairman. I am proud of the actions that the State of 
Maine is taking to promote early detection and improve data 
collection. The Maine Center for Disease Control and Prevention 
has distributed the State Plan for Alzheimer's, including its 
special insert with cognitive assessment tools to help primary 
care professionals make early diagnoses.
    Maine CDC has also collected data through the Cognitive 
Decline and Caregiver modules in its Behavioral Risk Factor 
Surveillance System. In Bangor, Maine, where I live, the Public 
Health Department has distributed hundreds of ``Know the 10 
Signs'' brochures. In Kennebunkport, the Public Health Office 
nurses are hosting talks on Alzheimer's to connect people with 
resources.
    It is important that we all note that Alzheimer's is not a 
normal part of aging. It is a disease. It is a public health 
issue with a course that potentially we can change. We have 
taken steps to increase funding enormously, from $414 million 
when I first started working on this issue in 1999 to nearly $2 
billion today, and that is making a difference.
    There are other steps that we can take to help prevent the 
risk of cognitive decline and to improve the lives of those 
living with the disease and their caregivers. This public 
health approach is not only empowering; it is the key to saving 
lives.
    Public health has proven its power with infectious 
diseases. With common public health measures, we are now able 
to control and prevent infectious diseases better than ever 
before.
    In the time that we are here today, more than 100 Americans 
will be newly diagnosed with dementia. Each and every one has a 
story--a life rich with memories and a future left to finish. 
While some of those precious memories may vanish due to 
Alzheimer's, we are here to boldly hold out hope for a better 
future.
    I really appreciate your coming to Washington. Many of you 
who have been here before will recognize this suit. Yes, I 
bought it I think 15 years ago, and I swore that I would not 
retire it until we had better treatments or a cure for 
Alzheimer's.
    [Applause.]
    The Chairman. So it is woefully out of style, and I am 
really sick of it. So let us get on with the job. Thank you.
    [Applause.]
    The Chairman. I am now delighted to turn to our Ranking 
Member, Senator Casey, for his opening statement, and I am 
going to go vote. Thank you.

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

    Senator Casey. Chairman Collins, thanks so much. How do I 
top that?
    [Laughter.]
    The Chairman. Well, you have a purple tie.
    Senator Casey. I am getting close. This tie was just dry-
cleaned yesterday, but at lunch I got a spot on it, so I will 
put that on camera.
    [Laughter.]
    Senator Casey. I want to thank Chairman Collins for her 
leadership on this issue and for making sure that we had this 
hearing today and for all of you for being here--everyone here, 
but especially of course our witnesses who are providing 
testimony to us today.
    We want to thank, of course, the advocates as well who have 
traveled very great distances to be here. I know many from 
Pennsylvania, but virtually every state is represented across 
our country.
    The experience of living with Alzheimer's or a related 
dementia or caring for someone with the disease is 
unfortunately all too common. It is a disease that affects all 
communities, and it does not matter where you are from or how 
much money you earn. It affects so many Americans.
    In our state alone, the State of Pennsylvania, an estimated 
280,000 people ages 65 and over are currently living with 
Alzheimer's. And as we will hear from Secretary Osborne from 
Pennsylvania, that number may not tell the entire story. There 
may be over 100,000 more people living with related conditions 
in our state and hundreds of thousands more loved ones, 
friends, and neighbors who are doing their best to care for 
them.
    As our population ages, these numbers will only grow, which 
is why we must take action now.
    Last year I was pleased to join Chairman Collins in support 
of increased funding for research into finding a cure for 
Alzheimer's disease. The federal funding was increased by an 
additional $414 million, bringing our annual federal research 
investment to $1.8 billion. That is a big step, but as 
evidenced by the number of people in this room, it is not 
enough. So I am continuing to press for additional research 
dollars, as I know folks in both parties are.
    We also need to ensure our communities and our health 
systems are able to meet the needs of those living with 
Alzheimer's and their caregivers. We need to improve our 
ability to diagnose the disease early so that we can slow its 
progression. We need to also make sure individuals and families 
do not just get a diagnosis, but also get the support they need 
to deal with the disease.
    And we need to make sure that no communities are left out 
of these efforts. That is why I am cosponsoring bipartisan 
legislation introduced by members of this Committee--Chairman 
Collins, of course, and Senator Cortez Masto--to tackle these 
challenges.
    The BOLD Infrastructure for Alzheimer's Act will help state 
public health systems like Pennsylvania's make real progress in 
the fight against Alzheimer's. And it is an example of the type 
of bipartisan cooperation that we need now more than ever.
    It is my hope that the voices of our witnesses here today--
and the voices of those of you in this room today--will help us 
get this bill to the President's desk. And it is my hope that 
your advocacy will help us secure a $2 billion annual 
investment in research so that we can soon hold a hearing 
focused on treatment and on a cure.
    I want to thank Chairman Collins again and thank everyone 
here. And, again, I will say to our witnesses we look forward 
to the testimony today.
    I know that Chairman Collins indicated there would be a 
recess after her opening, and I was able to give my opening. We 
are now, or will be shortly, on the second vote, and we will 
recess now and resume when the Chairman returns.
    Thank you.
    [Applause.]
    [Recess.]
    The Chairman. The hearing will resume.
    I want to welcome the cosponsor and a leader in the fight 
against Alzheimer's, Senator Catherine Cortez Masto. Thank you 
so much for being with us.
    [Applause.]
    The Chairman. And, Senator Jones, we are delighted to have 
you here as well.
    I am delighted to introduce our first witness today, Marcia 
Gay Harden. For those of you who follow popular culture well, 
she really needs no introduction. She is known for her roles in 
films such as ``Mystic River'' and ``Pollock'' for which she 
won the Academy Award. She currently stars in the CBS medical 
drama ``Code Black.'' In her real life, Ms. Harden is also a 
mother, a caregiver, and a strong advocate for Alzheimer's 
disease awareness. Last month she published a personal memoir--
I have a copy here--which is entitled ``The Seasons of My 
Mother: A Memoir of Love, Family, and Flowers.'' In her book 
Ms. Harden writes about her mother Beverly's battle with 
Alzheimer's disease, detailing the struggles, the small 
victories, and how their relationship evolved over time. Today 
Ms. Harden honors her mother's legacy in the way that all of us 
here honor our loved ones with Alzheimer's disease: by keeping 
our memories of them alive and by fighting to find a cure for 
this devastating disease.
    Next I am very pleased to introduce Dr. Lisa McGuire, who 
leads the Alzheimer's Disease and Healthy Aging Program at the 
Centers for Disease Control and Prevention. Dr. McGuire has 
served at the CDC since 2004 and published more than 75 
articles and book chapters on aspects of chronic health 
conditions, cognition, disability, caregiving, aging. You name 
it, she has written on it.
    I would now turn to my colleague, the Ranking Member, to 
introduce our witness from Pennsylvania.
    Senator Casey. Thank you, Madam Chair. I am pleased to 
introduce Teresa Osborne, who is the Secretary of the 
Pennsylvania Department of Aging. Secretary Osborne has 
dedicated her career to working with and advocating for older 
Pennsylvanians. In her current position she works to implement 
the Pennsylvania State Plan for Alzheimer's Disease and Related 
Disorders. Earlier this month her department announced the 
formation of Pennsylvania's Alzheimer's State Plan Task Force. 
I am proud that Pennsylvania is leading the charge with these 
initiatives and am looking forward to Secretary Osborne's 
testimony.
    I would also like to add, Madam Chair, we welcome a large 
contingent from Pennsylvania, including Phyllis Gallagher from 
Frackville, Pennsylvania. Phyllis testified in front of this 
Committee last year and has been a tireless advocate for those 
living with Alzheimer's and their caregivers in our home state, 
and we are pleased she could join us again today.
    Thank you.
    The Chairman. Thank you. I heard that there was actually a 
special bus that came down from your state.
    Senator Casey. Yes.
    The Chairman. So that is very impressive. But I want it 
known there are a lot of Mainers out there, too.
    [Applause.]
    The Chairman. Next I am delighted to introduce one of my 
constituents, Dr. Gareth Howell, an associate professor at the 
Jackson Laboratory in Bar Harbor, Maine. Dr. Howell co-leads 
the Alzheimer's Disease Precision Model Center at the Jackson 
Lab, and that was established by a $25 million grant from the 
National Institute of Aging in partnership with--and I am 
looking at Senator Donnelly now--the Indiana University School 
of Medicine. And I know that this is a terrific project of 
which he is proud as well. Dr. Howell has authored more than 55 
publications and received numerous prestigious awards for his 
work.
    Senator Scott very much wanted to be here to introduce the 
final witness that we will hear from today, Ms. Cheryll Woods-
Flowers, from Mount Pleasant, South Carolina. Ms. Woods-Flowers 
served as a caregiver and a court-appointed conservator for her 
father when he was diagnosed with Alzheimer's disease in 2004. 
She will tell us her father's story, her experiences in caring 
for him, and why she has remained such an active advocate and 
resource for others. Thank you for joining us as well.
    Ms. Harden, we will start with you. Thank you.

 STATEMENT OF MARCIA GAY HARDEN, ACADEMY AWARD WINNING ACTRESS 
         AND FAMILY CAREGIVER, LOS ANGELES, CALIFORNIA

    Ms. Harden. Thank you. I am honored to be here, and I am 
humbled to speak with so many as we come to Washington in hopes 
of tipping the scale.
    Thank you, Chairman Collins, Ranking Member Casey, and 
members of the Committee for the opportunity to testify today 
on the impact Alzheimer's disease has on my family and families 
across the country.
    As I look around me, I am grateful to see so many people 
gathered in this room today. But a scary statistic tells us 
that one or more of us, and certainly one or more of our 
children, will develop Alzheimer's disease. There is no known 
cure; the symptoms are devastating. And, to date, there are no 
survivors of Alzheimer's.
    Alzheimer's is an insidious, cowardly disease that needs 
all of our voices, the voices of families, of our elected 
officials, and the voices of our Nation to galvanize and find a 
cure. It is my prayer that with your help, advocacy, and 
funding, this generation is able to celebrate the first 
survivor of Alzheimer's.
    Congress has worked in a wonderfully bipartisan manner to 
quadruple Alzheimer's and dementia research funding at the 
National Institutes of Health since 2011 and continues to be 
deeply committed to providing the Alzheimer's and dementia 
researchers with funding to move research forward. However, 
more needs to be done so we can discover the cause of 
Alzheimer's and find a cure.
    Every 65 seconds someone in the United States develops 
Alzheimer's, and that number will nearly double by 2050. Almost 
two-thirds of Americans with Alzheimer's are women. These 
numbers frustrate, sadden, and, more importantly, anger me, and 
there is nothing more motivated than a pissed-off woman.
    [Laughter.]
    Ms. Harden. Alzheimer's disease first came into my life in 
2011 when my strong, witty, vibrant mother was diagnosed. So 
let me tell you a little bit about my Mom, Beverly Harden.
    She is one of the bravest women I have ever met. She raised 
five children while being stationed all over the world as my 
Dad served our country as an officer in the United States Navy. 
For months at a time, Mom would be alone with five children to 
feed, bathe, teach, and love. While we were stationed in Japan, 
she fell in love with ikebana, the art of Japanese flower 
arrangements, and it kept her grounded and connected to the 
beauty of life through nature. In fact, Mom went on to become 
the president of Ikebana International's most distinguished 
chapter right here in Washington, DC, but she does not remember 
that. She accompanied me to the Oscars in 2001. She does not 
remember that either. Her beautiful husband passed away in 
2002, and she does not remember that either.
    One of the first times I noticed my Mom having memory 
problems was around 2005 when we were traveling to Canada. We 
had boarded the plane, and she could not remember where she had 
just put her passport. So she checked her purse. Several 
minutes later, she forgot again and so checked once more. And, 
again, a third time. She became frantic, she was aware that 
something was wrong and that she should not keep forgetting 
where her passport was. But she did not want my help; she was 
in anguish. She wanted to string the moments together herself, 
with no gaps. Over time, those kinds of moments became more 
frequent, and in 2011 she was diagnosed with Alzheimer's 
disease.
    As we all know too well, Alzheimer's disease causes 
memories to evaporate. One minute a person can recall a detail 
of their favorite novel, the function of a spoon, or the fact 
that tulips bloom in the spring, and the next minute it has 
disappeared. Eventually the names and finally the faces of 
loved ones are also memories that have evaporated, and soon the 
meaning of their lives evaporates. They are deprived of the 
validation of the memory of their lives. They do not remember 
who they were. They do not know who they are.
    As a family, we focus on her care and on maintaining her 
dignity. We have sold my mother's home in anticipation of the 
mounting costs of caregiving. And it infuriates me how 
Alzheimer's becomes a stealthy thief, robbing families of their 
finances and security and forcing its victims to live only in 
the moment. For my mother, there is only the present with no 
connection to her past, without the rich tapestry of her life 
to tell her story. There is no dimension, just dementia. I see 
her concentrate, I see her try to speak the right words, I see 
her try to connect the memory to words. And through it all, I 
see her eyes smile, but it seems to me that the smile is just a 
little bit wounded these days.
    We do not know what the future holds, and we are scared. 
Will we eventually have to give up our own jobs to care for my 
mother? What will happen when the money runs out?
    As I watch my Mom decline, I find myself worrying about my 
children or about me having Alzheimer's, and Alzheimer's has 
changed me. But my Mom always told me to repurpose my pain, to 
do something useful, so I have become an outspoken advocate. 
And the more I learn about the disease, the more motivated I am 
to make sure that people are educated about it.
    I partnered with the Administration for Community Living 
for a nationwide campaign called ``What is Brain Health?'' 
which aimed to raise awareness about brain health while 
empowering older adults to make the most of their brains as 
they age, with a particular emphasis on early detection and 
diagnosis. Early diagnosis allows people to access available 
treatments, participate in support services, and if they choose 
to, very importantly, enroll in clinical trials.
    As scientists continue to search for a way to prevent, 
cure, or slow the progression of Alzheimer's through medical 
research, public health can also play an important role in 
promoting brain health and cognitive function and reducing the 
risk of cognitive decline. It is imperative that we as a 
country invest in a nationwide Alzheimer's public health 
response to achieve a higher quality of life for those living 
with the disease and their caregivers.
    One of the ways that we can make that investment is through 
legislation introduced by you, Chairman Collins, and your 
colleague Senator Cortez Masto, called the BOLD, or Building 
Our Largest Dementia, Infrastructure for Alzheimer's Act. It is 
endorsed by the Alzheimer's Association and the Alzheimer's 
Impact Movement, and BOLD would create an Alzheimer's public 
health infrastructure across the country to implement effective 
Alzheimer's interventions and focus on important public health 
issues like increasing early detection and diagnosis and 
reducing risk.
    There is nothing good about Alzheimer's. It is not a 
disease where one can make lemonade from lemons. And yet 
through it all, my beautiful mother has managed to teach me, 
even through the destruction of her capabilities and 
creativity, that there is such a thing as an indestructible 
spirit. And it is because of this indestructible spirit that I 
know she would want to help others by raising awareness about 
this horrible disease.
    The battle against Alzheimer's is a battle we must win. If 
we do not, it will cripple our Nation. As my father would say, 
we must pull ourselves up by the bootstraps. We must do our 
duty to the American people and fund and fight this battle, and 
we will win.
    Thank you for your time.
    [Applause.]
    The Chairman. Thank you so much for your very moving 
testimony and your challenge to all of us.
    Dr. McGuire.

STATEMENT OF LISA C. McGUIRE, PH.D., LEAD, ALZHEIMER'S DISEASE 
AND HEALTHY AGING PROGRAM, NATIONAL CENTER FOR CHRONIC DISEASE 
 PREVENTION AND HEALTH PROMOTION, CENTERS FOR DISEASE CONTROL 
    AND PREVENTION, DEPARTMENT OF HEALTH AND HUMAN SERVICES

    Dr. McGuire. Chairman Collins, Ranking Member Casey, and 
members of the Committee, thank you for this opportunity to 
share CDC's efforts to address Alzheimer's disease and related 
dementia. My name is Dr. Lisa McGuire, and I lead the 
Alzheimer's Disease and Healthy Aging Program at the Centers 
for Disease Control and Prevention.
    Alzheimer's is the only top-ten cause of death in America 
that cannot be prevented, cured, or even slowed. An estimated 
5.7 million Americans of all ages are living with Alzheimer's 
in 2018. By 2050 we expect that number to rise to 14 million 
people.
    Alzheimer's disease places a significant emotional and 
financial burden on people with the disease, their families and 
caregivers, and the health care system. Until we have a cure 
for Alzheimer's, CDC and its public health partners play a 
critical role in helping those 5.7 million people and their 
families. We work closely with state and local public health 
agencies by providing technical assistance, up-to-date 
scientific knowledge, cognitive decline and caregiving data, 
and promoting effective interventions to improve the health of 
Americans with cognitive decline and their caregivers.
    Not only are more people living with Alzheimer's disease, 
but Alzheimer's disease-related deaths have increased by 55 
percent from 1999 to 2014. Additionally, as people choose to 
age in place, one in four of those deaths of persons with 
Alzheimer's now occurs at home. As these numbers increase, 
caregivers become even more critical. We know that nearly one 
in four adults report providing care to a family member or 
friend in the past year. While some aspects of caregiving can 
be rewarding, caregivers for persons with Alzheimer's disease 
often report higher levels of anxiety, depression, and poorer 
health outcomes than their peers. The needs of caregivers is a 
public health issue that CDC remains focused.
    First funded for Alzheimer's disease in 2005, CDC launched 
the Healthy Brain Initiative, providing leadership in a number 
of national efforts. In 2007 we developed our first road map, 
the National Public Health Road Map to Maintaining Cognitive 
Health. CDC and the Alzheimer's Association will release the 
third public road map later this year, in 2018, with an updated 
plan of 25 actions for state and local public health 
departments that are focused on accelerating the progress of 
risk reduction, early detection and diagnosis, safety and 
quality of care for people living with a cognitive impairment, 
and most importantly, caregivers' health.
    Perhaps the greatest accomplishment of the Healthy Brain 
Initiative to date is the improved data collection. To measure 
the public health burden of cognitive decline and caregiving in 
the United States through the Behavioral Risk Factor 
Surveillance System, ongoing collection, analysis, and 
interpretation of data is pivotal to identifying and addressing 
gaps in program delivery, monitoring and evaluation of 
progress, and achieving health care goals.
    States and jurisdictions use these data, often the only 
available source of state-level data, to develop Alzheimer's 
disease plans, increase awareness, and guide elder justice and 
emergency preparedness efforts for the one in nine middle-aged 
and older adults who reported that their memory has worsened in 
the past year. CDC has state-specific fact sheets and maintains 
a free and easy-to-use Web site where researchers and the 
public can view and utilize the data for their state.
    Public health has a critical role to play in combating the 
issue of Alzheimer's disease and related dementia. As the 
evidence grows about the risk factors and effective disease 
interventions, CDC, with the support of Congress and public 
health professionals across the country, will continue to draw 
on our expertise to continue to improve health, well-being, and 
independence of those with Alzheimer's disease and their 
caregivers through our Healthy Brain Initiative and the Road 
Map series.
    Thank you for your focus on this critical public health 
issue, and I look forward to your questions.
    The Chairman. Thank you very much, Doctor, and thank you 
for the work that the CDC is doing.
    Now to learn more about the state perspective, I am pleased 
to call on Secretary Osborne.

STATEMENT OF HONORABLE TERESA OSBORNE, SECRETARY, PENNSYLVANIA 
         DEPARTMENT OF AGING, HARRISBURG, PENNSYLVANIA

    Ms. Osborne. Good afternoon. Thank you, Senator Collins and 
Senator Casey, for the opportunity to testify at this 
incredibly important hearing.
    As I sit before you today, I am in complete awe of each and 
every one of the over 1,200 advocates, including the 50 
Pennsylvanians hailing from Pennsylvania soil who gathered here 
today and have spent this past day courageously sharing their 
stories of love, devastation, and hope for a world without 
Alzheimer's. As Secretary of Aging for the Pennsylvania 
Department of Aging, I am humbled to join them as together we 
raise our voices for all of those impacted by Alzheimer's.
    In my role I have the honor of serving at the pleasure of 
Governor Tom Wolf, who has made it a priority that we in 
Pennsylvania uphold the provisions of the Older Americans Act, 
an act that calls us to serve as visible and effective 
advocates for older Americans, including the 3 million 
Pennsylvanians who are age 60 years of age or older. And for 
us, in the year 2020, that year of perfect vision, one in four 
Pennsylvanians will be 60 years of age and older. And in 
Pennsylvania, we believe that the Alzheimer's trajectory can be 
influenced and changed.
    Pennsylvania's current infrastructure, anchored by our 
State Plan on Aging, which is required under the Older 
Americans Act, and our State Plan on Alzheimer's and Related 
Disorders is in perfect alignment--perfect alignment--with the 
Committee's already recognized need to further invest in a 
nationwide Alzheimer's public health response that will promote 
better treatment and care for those living with Alzheimer's.
    While my written testimony outlines in great detail the 
first two points just mentioned, I will focus the remainder of 
my verbal testimony on the need and the opportunity before us 
to better leverage Older Americans Act services for the 
millions of Americans and the hundreds of thousands of 
Pennsylvanians with Alzheimer's or a related disorder.
    All told, one in 12 Pennsylvania families are impacted by 
Alzheimer's or a related disorder. Moreover, nearly 675,000 
Pennsylvania caregivers are providing billions of dollars in 
unpaid care to loved ones with dementia.
    From our lens at the Pennsylvania Department of Aging, 
whenever we talk about health care and the elderly, we 
immediately pivot to three landmark federal programs, all of 
which were enacted in 1965: Medicare, Medicaid, and the Older 
Americans Act. And while Medicare and Medicaid began as basic 
health care programs, over the years they have evolved where 
they now provide Americans with improved access to quality and 
affordable health care coverage. But the Older Americans Act 
was created by your predecessors in Congress to bear the 
responsibility for community planning for aging programs and to 
serve as a catalyst for improving the organization, 
coordination, and delivery of aging services in every state.
    For these past 53 years, in communities across the country, 
state units on aging, in partnership with their network of 
local Area Agencies on Aging, through the provision of those 
Older Americans Act services, help older Americans. They help 
older Americans remain healthy, stay connected with their 
communities, avoid hospitalizations or rehospitalizations, and 
defer altogether or transition from nursing homes. Older 
Americans Act services deliver vital programs that are low cost 
and high quality, including assistance in the home with 
personal care, accessing nutritional programs, or attending 
adult day service programs.
    Moreover, the Older Americans Act-funded National Family 
Caregiver Support Program explicitly acknowledges the needs of 
families of older people in their caregiving role, including 
serving caregivers of individuals of any age with Alzheimer's 
disease.
    Like many if not all of you on this prestigious Committee, 
every day I have the privilege to listen to concerned citizens 
who are either currently caregivers, who have been caregivers, 
who anticipate being a caregiver, or citizens who are receiving 
care or will need care, because every one of us in this room 
will in our lifetimes fit into one if not all of those buckets. 
And just before this hearing, I gathered with Pennsylvania 
advocates listening to their stories, stories that while 
individualized for individuals such as Jim and Phil and 
Michelle and Tom, but to the collective, their stories are 
compelling, and they are challenging. They challenge me and 
hopefully all of us to use our voices for good, to move beyond 
the status quo, to do more, to do it differently, to do it 
better. And we need to do it better. We need to destigmatize 
Alzheimer's and dementia. We need to better invest in the aging 
services network in order to meet the needs of individuals with 
Alzheimer's and their caregivers, affording them the 
opportunity to age in place in the setting of their choice with 
their friends and their families with the dignity and respect 
that they deserve. By doing so, we will boldly transform the 
Older Americans Act from being a small but important program to 
one that bends the cost curve on entitlement programs by 
providing community-anchored long-term services and supports in 
a more cost-efficient, accountable, and person-centered care 
manner so that, regardless of ZIP Code, we create dementia-
friendly communities that better respond to and meet the needs 
of the most vulnerable among us.
    Thank you for the opportunity to present this testimony. I 
look forward to any questions you may have.
    The Chairman. Thank you very much for your testimony.
    [Applause.]
    The Chairman. It is a great pleasure for me to call upon 
Dr. Howell.

  STATEMENT OF GARETH HOWELL, PH.D., ASSOCIATE PROFESSOR, THE 
             JACKSON LABORATORY, BAR HARBOR, MAINE

    Dr. Howell. Thank you. Good afternoon, Chairman Collins, 
Ranking Member Casey, and members of the Committee. Thank you 
for the invitation to be here today and for your work in 
support of Alzheimer's disease and dementia research. My 
colleagues at Indiana University also thank Senator Donnelly 
for his continued support.
    Aging research has been a key area of investigation at the 
Jackson Laboratory, or JAX, for many years, originally in the 
State of Maine and now also in California and Connecticut. 
However, we have recently established a vibrant Alzheimer's 
disease research program that includes more than 40 scientists 
led by myself and Drs. Gregory Carter, Catherine Kaczorowski, 
and Kristen O'Connell. We aim to identify genetic factors that 
drive both susceptibility and resilience to AD. We also aim to 
understand how modifiable risk factors, such as diet and 
physical activity, contribute to AD. We are working with the 
scientific community in the U.S. and worldwide to leverage 
these findings to identify and test novel therapeutic targets.
    It is incredibly challenging to identify the earliest 
stages of complex diseases such as AD in human patients since 
they occur before any recognizable symptoms emerge. However, 
this is where animal models of human diseases come in. Mice 
share 95 percent of their genes with humans, and so we focus on 
building accurate representations of human disease in mice.
    Sadly, clinical trials for Alzheimer's disease have not yet 
been successful. One reason is the lack of targeting early or 
pre-symptomatic stages. However, another is the lack of animal 
models that faithfully reproduce key hallmarks of human AD. 
Therefore, I am really excited to be a part of MODEL-AD, a 
collaboration between Indiana University, JAX, Sage 
Bionetworks, and University of California Irvine, that was 
established through the generous funding from the National 
Institute on Aging in the fall of 2016. And you will be glad to 
know that in the 1-hour drive back from Bangor airport, we 
renamed the IU-JAX Alzheimer's Disease Precision Model Center 
to MODEL-AD, which is much more catchy and easier to read out.
    [Laughter.]
    Dr. Howell. MODEL-AD aims to create at least 50 new mouse 
models for Alzheimer's disease and test at least 5 new 
compounds for their potential to prevent, slow, or cure 
Alzheimer's disease. We are 2 years into this 5-year project. 
We have created more than 15 new mouse models that are being 
assessed for their relevance to human late-onset Alzheimer's 
disease, and as I show in the figure, using the same AD 
relevant measurements to those used to determine whether an 
individual is developing AD. This is a key advance that we have 
had in the field in the last few years.
    We have also established procedures by which new compounds 
can be tested in mice and are discovering new biomarkers so 
patients can begin treatment at earlier stages than previously 
possible.
    Importantly, MODEL-AD is governed by the same open science 
policy at other NIA-funded centers such as the Accelerating 
Medicines Partnership in Alzheimer's disease have been adhering 
to since their inception. All data will be made publicly 
available through a web portal created and managed by Sage 
Bionetworks. Also, all mouse models are made widely available 
to the scientific community, something that Jackson Labs has 
been doing for many years. While we wait for that cure, data 
show that changing lifestyles such as diet and physical 
activity is also likely to reduce incidence of AD.
    If we could have the next figure? At JAX we are using mice 
to understand the contribution of modifiable risk factors for 
AD. Studies in mice have the advantage that, unlike the human 
population, genetics and other environmental stresses can be 
controlled to specifically determine the role of diet and 
physical activity on AD risk. Work in my lab and others showed 
that regardless of the diet they consumed, mice that exercise 
from young to middle or old age remain cognitively normal. 
Therefore, encouraging lifestyle changes for all ages should 
remain a public health focus.
    Finally, a sometimes forgotten aspect of the mouse is that, 
just like the human population, genetically distinct or diverse 
mice exist. If we could have the final slide? However, most 
mouse studies are performed on one mouse strain that turns out 
to be resilient to memory loss. We believe this is an important 
contributing factor to the failure of translation of animal 
model studies to the clinic. Encouragingly, we now have data to 
show that, just like the human population, amyloid deposition 
leads to memory loss in some but not all mouse strains. We are 
now using these genetically distinct mouse strains to determine 
the genetic factors that control amyloid-induced memory loss. 
These genes and pathways can be targeted as potential 
treatments for AD and related dementia. We are also, and 
importantly, determining how genetic and modifiable risk 
factors combine to alter risk for AD.
    In summary, research at the Jackson Laboratory and 
collaborations such as MODEL-AD are creating, validating, and 
testing new mouse models to develop strategies to prevent, 
slow, or treat Alzheimer's disease.
    I express my thanks to the Committee for this opportunity 
and for its continued support of Alzheimer's disease research.
    The Chairman. Thank you very much, Dr. Howell.
    [Applause.]
    The Chairman. Ms. Woods-Flowers.

  STATEMENT OF CHERYLL WOODS-FLOWERS, FAMILY CAREGIVER, MOUNT 
                    PLEASANT, SOUTH CAROLINA

    Ms. Woods-Flowers. Thank you so much for having me today. 
Chairman Collins, Ranking Member Casey, and members of the 
Committee, thank you for the opportunity to testify today about 
my experiences as a caregiver for my late Dad. I hope my story 
will bring more awareness to this awful disease that we all 
call ``Alzheimer's.''
    My father, Richard Allen Novak, passed away in February--so 
it is kind of right here, so you all will have to forgive me 
for a minute--after living with Alzheimer's for nearly 16 
years. When he was 18, my Dad left his home in Wisconsin to 
join the U.S. Navy. That brought him to Charleston, South 
Carolina, where he would meet and fall in love with my Mom. 
That story gets told a lot of times. My Dad worked hard 
throughout his career in the Navy and the civil service, 
retiring in 1988, and then he started a successful woodworking 
business. He will be remembered for his love of dogs, people, 
his amazing Christmas light displays that always drew lines of 
cars, and his love for his family including 6 children, I am 
the oldest of the 6, 11 grandchildren, and 14 great-
grandchildren.
    Before my Dad was diagnosed with Alzheimer's, it was not 
something that my family knew much about. Sixteen years is a 
long time. My Mom started noticing that my Dad seemed to be 
having trouble remembering where he left things. He was taking 
longer with errands. We knew that he must be getting lost or 
turned around in a city that he had lived in for over 50 years. 
And he kept forgetting things that he was supposed to be doing.
    In 2003, my parents took a trip to Florida, which they had 
done many times before. Dad left the hotel at 8 o'clock a.m. to 
get a tire fixed. At about 4 o'clock p.m. that day, my Mom 
called us to let us know they could not find my Dad. My Dad had 
not shown back up. My Dad did not have a cell phone, and they 
could not find him.
    When he was eventually found, he had been crying, had not 
eaten all day, did not have any money. It was truly an eye-
opening experience for my entire family.
    After that, we knew that something was indeed wrong and we 
had to get him help. We took him to a specialist at the Medical 
University of South Carolina where he was diagnosed with 
Alzheimer's at age 70 very early in his disease, which was 
indeed a benefit for my Dad and for us. Every day we lost a 
little bit more of him, including the last 5 years where my 
Dad, who never met a stranger, did not recognize any of us, 
anybody he ever knew, or even my mother that he was married to 
for 50 years.
    In a way we were lucky that my Dad was diagnosed so early 
with the disease. The early diagnosis gave us that time to talk 
through what we would do, as easy as it is for six children to 
agree on anything. We were able to make good decisions for him. 
We started some interventions. He started on Aricept and 
Namenda right away and was on that drug almost until the time 
of his death. So the medications helped him with the symptoms 
and gave him a better quality of life. We also learned ways to 
work around the best way for him to be cared for and for him to 
have the best quality of life that he could.
    After he was diagnosed, my sister Theresa and I were named 
as conservator and guardian, and we became his primary family 
caregivers. We sold his house that he and my Mom had bought 55 
years prior. Thankfully, they made the decision to buy a home 
in a city with a great deal of appreciation, and that was what 
took care of him in a facility that was almost $6,000 per 
month.
    About three years ago, we got to the point when we put him 
there, and we found a great facility that was nearby us, but it 
certainly did not come, again, without a significant amount of 
expense. If he had not had that home--my parents raised six 
children on very little money, and there was no savings to take 
care of him. My Mom had been gone since 2005.
    I have always believed it is never enough to sit around and 
just wait on somebody else to do something, and I know that you 
all know those people, too. If not me, then who will do it? 
About four years ago, I became an advocate with the Alzheimer's 
Association and have been participating in the Walk to End 
Alzheimer's because I want to be part of the effort to 
eradicate this terrible monster of a disease. We must make the 
public and health care professionals aware of the early signs 
of Alzheimer's disease. There needs to be a greater nationwide 
public health effort and infrastructure in order to increase 
early detection and diagnosis. Legislation like the BOLD 
Infrastructure for Alzheimer's Act will help do that. This 
legislation would establish Centers of Excellence to increase 
education to the public, health care professionals, and public 
health officials on Alzheimer's, brain health, and health 
disparities, as well as collecting much-needed data on 
Alzheimer's and caregiving.
    Investing in a nationwide Alzheimer's public health 
response will help create a higher quality of life for those 
that are living with this disease, their caregivers, and also 
reduce associated costs. The thing that I found the most 
stressful in some of the facilities that we looked at, and in 
talking with some of my friends also going through this, is we 
tend to think about treating symptoms, forgetting that these 
are people, and they need to enjoy the best quality of life 
they can while they are going through a disease that takes a 
very, very long time. It is a long walk in most cases.
    The last few days I have joined with 1,200 of my closest 
friends, the 1,200 advocates from all across this country to 
make our voices heard in support of the BOLD Infrastructure for 
Alzheimer's Act. I promised my Dad that I would be his advocate 
and voice as long as I am able to. I hope that my children and 
grandchildren will not have to think about these issues because 
a cure should and would be found and hopefully in time for me 
to see that and for my children to see that.
    As a caregiver and an advocate, I am respectfully asking 
Congress to continue to make Alzheimer's research a priority by 
increased funding for Alzheimer's research at NIH by an 
additional $425 million and to help families gets diagnosed 
early by passing the BOLD Infrastructure for Alzheimer's Act.
    This is my first Father's Day--sorry, guys--without my 
sweet Dad. Thank you for listening to all of us and for all 
that you have done. Please continue to fight for everybody that 
is going through this disease. I appreciate it.
    The Chairman. Thank you so much.
    [Applause.]
    The Chairman. That was wonderful. Thank you.
    Thank you so much for your moving testimony. I can so 
relate to what you are going through, having lost my own father 
to the disease on March 10th, and this was my first Father's 
Day, too, and it really is painful. And I am going to end up 
like you if I keep talking like that.
    [Laughter.]
    The Chairman. I am going to switch to questions and start 
with Ms. Harden.
    Ms. Harden, we talk a lot about statistics when it comes to 
this disease and about the cost, but there is another cost that 
cannot be measured in dollar signs, and that is the impact on 
the family when they get the diagnosis that a loved one has 
Alzheimer's disease, and grief really starts at that point of 
diagnosis.
    I applaud you for giving voice to how you have coped with 
the emotional consequences of that diagnosis. Are there any 
resources that you have found particularly helpful or any that 
you wish had existed when you first learned of your mother's 
diagnosis?
    Ms. Harden. That is a piercing question, and you are so 
right, the diagnosis of Alzheimer's of a loved one, of a family 
member, of a parent who is supposed to be leading the way 
forces the siblings to lead the way, and siblings usually do 
not agree about much of anything, but especially what Mom or 
Dad would have wanted. And what I have found is that it is a 
family disease, and it very often tears the family apart. They 
say it either brings out the best in the family or the worst in 
the family, and I think it brings out both in the family.
    At the time we only had the ``36-hour'' book. That is what 
her doctor talked to us about, the ``36-hour'' care book. We 
also had the Alzheimer's Association, and they were helpful to 
us, but they could not tell us how to mend the differences of 
the family, of what Mom would have wanted. I wish we had had 
BOLD. I wish we had had something very specific to say this is 
what you turn to, this is where you understand resources and 
financing and diet and all of the things that we are learning 
about today.
    We became fractured, to be honest. My family became 
fractured, and it has been a journey to pull us back together 
so we can give my mother the best care. Finances--we have no 
recourse for finances. When the finances run out, that is our 
question: What do we do then? How do we handle it when the 
finances run out?
    So I think every little bit of awareness tips the scale. I 
keep thinking about, you know, AIDS and how the more voices 
came together, the more plans came together, the more it tipped 
the scale until we found a cure. And that is what I feel like 
we are doing today.
    I will just say I felt like I was on a sinking ship, and I 
feel like in this room, everyone in here has the same---we are 
all on the same journey. And yet the ship--there is that phrase 
``at crank.'' ``At crank'' means the ballast is not balanced. 
And I feel like we are here pleading and following you to 
balance the ship so that we can continue this journey safely.
    The Chairman. Thank you.
    Dr. Howell, you mentioned in your testimony an issue that 
really matters to me, and that is, when federal funding is 
being used, to me we want to share the data, the results as 
broadly as possible. Could you elaborate on what Jackson Lab 
does to spread the word about the research that you are 
conducting and the new mouse models that you are developing?
    Dr. Howell. Yeah, I can. Much of the data that we have 
already used in order to generate the first mouse models have 
come from publicly available data, and this is something that 
was established by the NIH, particularly the NIA, when they 
first established the collaborations that preceded ours, which 
was to better understand the human condition. And so as I 
mentioned, the Accelerating Medicines Partnership for 
Alzheimer's Disease, all that data was publicly available, and 
that really helped us to get a jump start on how and which 
mouse models we were going to create. But in MODEL-AD, we are 
living by the same standard, so whenever we create new data, 
that data goes to the same place that the AMP-AD is submitting 
their data to, and so it is all under the same--it is all in 
the same place.
    We also have other Web sites. We are using online and 
resources. We are promoting our data at conferences, and 
apparently we are tweeting and all sorts of things. And then, 
obviously, the Jackson Lab has been a mouse model distributor 
for many, many years, and so we have leveraged that skill set 
to make sure that all of our mice are available without 
restrictions, which has also been something that has hindered 
Alzheimer's disease research in the past, so that we can get 
these mouse models to whoever wants to use them, particularly 
maybe pharmaceutical companies who have struggled in the past 
to get the latest mouse models. And so we are working closely 
particularly with Eli Lilly, for instance, in Indiana to make 
sure that they want to use our new models, and if they want to 
use them, then other pharma who ultimately lead the clinical 
trial efforts will also benefit from them.
    The Chairman. Thank you.
    Senator Casey?
    Senator Casey. Thank you, Madam Chair.
    I want to start with Secretary Osborne. As I indicated 
earlier and as we all know, with Alzheimer's disease it does 
not matter who you are or where you live or what your 
background is. It affects every community and in some way or 
another almost every family.
    You know that in our state we have got a major part of our 
population as well as land mass that is considered rural. We 
have 48 of our 67 counties considered rural in Pennsylvania. So 
we have got to make sure that no matter where a person lives 
that they have access to the treatment they need and the 
support that they need.
    What can we do, Secretary Osborne, to make sure that 
individuals diagnosed with Alzheimer's disease who happen to 
live in rural areas, say one of those 48 counties in our state, 
that they have access to both services and supports?
    Ms. Osborne. Thank you, Senator, for that question. It is 
one that we ask ourselves and our aging network and our 
partners on this journey, such as the Alzheimer's Association, 
every day. Researchers obviously will tell us that individuals 
living in rural areas that are diagnosed with Alzheimer's 
disease or another related dementia already face unique 
challenges. Their challenge is just including a lack of 
transportation or limited access to health care without having 
to travel a great distance. Those challenges, they create even 
more stress on caregivers.
    So for us, in order to help our rural communities, these 
public-private partnerships--and it is not just an aging issue. 
It has been pointed out to me time and time again, even with 
the Pennsylvania advocates I met with earlier today, this is a 
community issue. How are we best going to leverage our 
resources at the Department of Aging, with the Department of 
Health, with the Department of Human Services, and then parlay 
that down to the local level, that we are indeed working with 
local human service agencies in every rural community, plus the 
hospital system. And I can go on and on with regard to the need 
to constantly pivot back to better leveraging the resources 
entrusted to our care so that we can support caregivers, so we 
have health care communities that are established.
    One of the easiest things that I feel that we can do is to 
work with our partners on creating these dementia-friendly 
communities, you know, where any of us live, work, worship, 
play, pray, the banks that we go to, the pharmacies, the 
groceries. Each one of us had a stake in this in terms of 
ensuring that individuals with dementia are understood, that 
they are valued, and that they are still able to contribute to 
their community, and by working together with our partners, we 
can ensure that our communities are dementia-friendly and that 
we can look out for one another and we can ensure that the most 
important story in all of this to be told is the individual 
living with dementia.
    It was mentioned by many of my esteemed panelists here 
today, early diagnosis and early connecting to resources and 
services. If we can better detect, diagnose, and then better 
connect individuals with those low-cost, quality services at 
the home and community-based level, we will bend that cost 
curve so that we are not relying upon Medicare and Medicaid and 
higher costs of care such as nursing home facility level of 
care, as Cheryll described.
    From our particular lens, as but one state in this effort, 
how we connect to the national plan so that communities all 
across this country, regardless of ZIP Code, that we have 
dementia-friendly communities that have resources available to 
help one another through this really devastating disease.
    Senator Casey. Well, I know you have been to a lot of those 
communities, if not every one, in our state that have both 
substantial health care needs as well as at least the potential 
for an access problem because of where they are. And you 
mentioned at the outset of your answer about the--you said the 
stress on caregivers. I wanted to focus on that for a moment, 
when it comes to caregivers, the remarkable, heroic work that 
they do. And we have got to make sure we are doing all we can 
to support them.
    Many of the programs that you oversee for the Older 
Americans Act can help caregivers. Can you tell the Committee 
what the caregivers you speak to, what supports do they need 
and what services are most valuable to them?
    Ms. Osborne. Thanks, Senator, for this question. No 
different than you, when you journey home to Lackawanna County 
on the weekends, and I do the same, inevitably somebody asks 
you a question with regard to ``I need help with X, Y, and Z.'' 
It happens to all of us, I am certain.
    To me, just this past weekend, I had two friends who 
approached me with exactly what you just described: ``I need 
help with affording care. I do not know where to turn. I need 
respite care. My siblings will not help me.''
    So for us in Pennsylvania, how are we going to best ensure 
that for the individuals journeying with this disease and for 
the caregivers who help support them, that again we can detect 
and connect them with local resources. By and large, the Older 
Americans Act services, they do support senior community 
centers that are safe harbors for individuals with early onset 
dementia in particular, to continue to go to, receive access to 
nutritional services, receive access to support, and a safe 
harboring community. But we also have an opportunity under 
Older Americans Act services, under the National Family 
Caregiver Support Program to ensure that we are connecting 
their caregivers with services. And, by and large, the most 
requested service that I get asked about by caregivers is 
access to respite. They need a break themselves. Whether it is 
for a couple of hours, a couple of days to go to a family 
reunion, to go to a class reunion, just to go to dinner, just 
to take a shower, how do we connect them with that respite 
service? And how can we truly break open the National Family 
Caregiver Support program so that we do not have any barriers 
to ensuring that whatever that caregiver is identifying, that 
we can help them provide that service without a list of 
barriers, to be able to assist them with that.
    So we are excited about the work that has been done to 
enable the aging network in the Commonwealth of Pennsylvania to 
be certain, but also across this country because of work this 
Committee has advocated for with the Family Caregiver Program. 
But we also know we have a lot more work to do. And as Cheryll 
mentioned, public safety programs, you know, if we had a 
federal stamp on a public safety program that can actually 
ensure that first responders have the tools and technology that 
they need in order to aid them in safely reuniting a missing 
individual with their family, you know, just like an Amber 
alert, we all know what that means. But it is not the same with 
individuals with Alzheimer's and dementia who, regretfully, get 
lost from their family members for lots of reasons, as Cheryll 
just described. So those public safety programs are critical to 
be part of the infrastructure of how we can boldly move forward 
to ensure that we are meeting the needs of caregivers today as 
well as the ones in the future.
    Senator Casey. Thank you very much.
    The Chairman. Thank you.
    Senator Fischer?
    Senator Fischer. Thank you, Chairman Collins and Ranking 
Member Casey, for holding this important hearing and for your 
leadership on this issue and on the BOLD Infrastructure for 
Alzheimer's Act. Thank you both.
    I would also like to thank the witnesses for being with us 
today and for sharing your personal experiences. The news when 
a family member or friend is diagnosed with Alzheimer's rocks 
everyone in its wake, and as all of you know, that official 
news is one of the many steps in a very long journey. Again, I 
would like to thank you all for sharing your stories.
    This is a question for the entire panel, and we can go down 
the row if that would be helpful. What is it about the BOLD Act 
that you find the most promising or central as we continue to 
spread awareness and where really we can work toward more of an 
understanding about this very evil disease? Ms. Harden, would 
you like to start, please?
    Ms. Harden. Certainly. I do not know the specifics of the 
act to speak to exactly which is better, you know, which part 
of it is better than the other. But what I know about it is 
that it talks early detection, and one of the things that 
really affected my family was that we lost a huge window with 
my mother. We did not have early detection, and so we lost my 
mother's voice in determining what she wanted for the rest of 
her life, how she wanted to live and, frankly, how she wanted 
to die. And we did not get to have that question, and so the 
kids had to answer that question for her. That is something I 
never want my children to have to answer for me. So I have been 
an advocate for early detection.
    The other thing that I really love when I heard about it, 
what I am learning about it, is that it unites the Nation, and 
I think that is such a wonderful future to look to, that it 
unites the Nation as we care for ourselves as we age, that we 
have a plan. I am a ``I want a plan'' girl. I feel much safer 
with a plan. And so that is what it feels to me--I had a 
metaphor last night that Senator Collins is literally in a 
darkened tunnel with a torch saying, ``Here is the way out, and 
I am not getting out until everybody is out,'' so kind of 
lighting the path for us, and I think that is what we need. I 
think we need direction.
    Senator Fischer. Thank you. Doctor?
    Dr. McGuire. Thank you for that question. I cannot comment 
on the specifics of the BOLD Act, but I can say that our states 
across the U.S. are poised to act and to help us with this 
public health crisis. And the BOLD Act will allow for some 
national awareness and some convening that could help states 
really dig in and make a difference.
    Senator Fischer. Thank you. Secretary?
    Ms. Osborne. I appreciate the question very much, and I am 
probably one of the most hopeful people in the room, but I was 
also taught by my Dad to realize that hope is not a plan.
    So when I heard of the BOLD Act and the folks in the 
Alzheimer's Association and others who work with us on our 
state plan on Alzheimer's disease talk to me about the BOLD 
Act, and then we dived into it a little bit more on our end, 
Pennsylvania is already well positioned, as I have in my 
written testimony and briefly spoke about with regard to my 
verbal testimony. We are incredibly well positioned because of 
our current infrastructure. We have a state plan on aging under 
the Older Americans Act. We have a state plan on Alzheimer's 
and other related disorders, and that is great. We have plans. 
Now, how are we going to put those plans into action? And it is 
because of the partners, many of whom are gathered with me here 
today from Pennsylvania, from the Alzheimer's Association, they 
are Alzheimer's advocates, they are ambassadors, in order to 
ensure that together all of us will work toward that plan of 
BOLD, in particular.
    Our infrastructure also includes two NIA-funded Alzheimer's 
research centers--one at the University of Pennsylvania in 
Philadelphia, at the Penn Memory Center, and the other at the 
University of Pittsburgh. For us in Pennsylvania, we are 
incredibly excited about the opportunity to actually host an 
Alzheimer's Care Center of Excellence. We feel that we are 
leading the way under the Governor's administration with regard 
to all kinds of public health issues, and I mentioned a little 
bit earlier, when it comes to our opportunity to communicate, 
coordinate, and collaborate our efforts across our health and 
human services agencies--and the Department of Aging is just 
but one part of that--the Department of Health, the Department 
of Human Services, the Department of Drug and Alcohol Programs, 
the Department of Insurance, Department of Transportation--I 
can go on and on and on.
    But we need to work better together, break out of our 
silos, which is probably the most overused words ever, with 
regard to how we are going to use the resources.
    Senator Fischer. But also the most important.
    Dr. McGuire. I agree. How are we going to use the resources 
entrusted to our care, whether they are resources that come, 
you know, thankfully and gratefully, from the Federal 
Government, whether they are taxpayer dollars, whether--in the 
Commonwealth of Pennsylvania, 75 percent of our budget at the 
Pennsylvania Department of Aging comes from the Pennsylvania 
lottery. So hopefully everybody here will buy a Pennsylvania 
lottery ticket.
    [Laughter.]
    Ms. Osborne. It benefits older Pennsylvanians. Got to play 
to win. But that does support the work that we do, which is why 
I so passionately advocate for the BOLD Act and why I really 
wanted to pivot my testimony toward the Older Americans Act, 
which is often not the third pillar of the stool of those three 
main federal entitlement programs, such as Medicare and 
Medicaid, but we have an opportunity to bend that cost curve by 
providing better services, low-cost, high-quality services, in 
the homes and communities of our older Americans. We can do so 
much better, and this BOLD Infrastructure will allow us to do 
that.
    Senator Fischer. Thank you. Doctor?
    Dr. Howell. I think whenever I hear things like early 
diagnosis, I guess what excites me as a researcher is that the 
earlier we go, the better, the more likely therapeutics will 
work. And so as a researcher, this act would allow us to get at 
earlier and earlier stages of Alzheimer's disease that we can 
then both understand through basic research in, for instance, 
animal models, but also then using them as a discovery tool to 
then turn the question on its head and to ask whether what we 
have identified in our animal models of disease actually 
reflects what goes on in the human population, because it is 
certain that the earlier we start the treatment, the more 
successful that treatment will be. And I think as an advocate, 
with my friends from the Maine chapter of the Alzheimer's 
Association, I get a lot more of an understanding about 
advocacy and care, and that seems to be exactly what is needed.
    Senator Fischer. Thank you.
    Ms. Woods-Flowers. The BOLD Infrastructure Act, it comes 
home to me in a number of ways. In the late 1980's, my first 
husband was diagnosed with cancer, and the biggest thing for me 
was having a road map. What in the world am I going to do? 
Where am I going next? What is the plan? What is the 
infrastructure? And with cancer, that is laid out for you. 
Right away, you know, you are diagnosed. We are going to do 
this and this and this and this. And it gives the family 
members and the person who is fighting the disease an 
understanding of what is going on, but they have more sense of 
control in exactly where their life is going. And with control, 
it decreases the amount of stress for a caregiver and certainly 
for somebody who has some sort of disease.
    One of the things that I learned that has really just taken 
the breath out of me at times as I have been involved with 
Alzheimer's is the number of people who do not come under what 
we would normally call ``older,'' the people in their 40's and 
50's. I mean, I am just over 60--now the whole world knows. 
This is on C-SPAN.
    [Laughter.]
    Ms. Woods-Flowers. And I do not consider myself older. But 
we are seeing people in their 40's and 50's and 60's that still 
should be productive members of this society that do not come 
under any act for older people and they are given this 
diagnosis, it will absolutely--we were thrown for a loop, but 
we expect--my Dad was getting older, but if that was somebody 
in their 40's or 50's or 60's, just imagine what that does to 
your life when you still have children at home, when you still 
have huge responsibilities for caregiving for your family, but 
also probably as productive members of society.
    Fifty percent of the people that are living with this 
disease have yet to be diagnosed. This has got to be a public 
health issue. People that do not have access to facilities like 
the Medical University of South Carolina--I am blessed to live 
where I live because we had lots of resources, people that were 
willing to see my Dad on a short-term basis. People that are in 
the rural areas do not have that kind of access, so this has 
got to be a public issue, a public health issue. We have got to 
establish Centers of Excellence, so this is going--so we look 
at brain health. As I have been told by physicians, the brain 
is probably one of the least understood parts of the human 
body. That has got to change, because it is absolutely 
impacting the ability of people to enjoy their lives the way 
that they should.
    Senator Fischer. Thank you. As most of you here, my family 
has faced this terrible disease. I thank you for what you do.
    The Chairman. Thank you very much, Senator, and thank you 
for cosponsorship of the BOLD Act.
    Senator Cortez Masto?
    Senator Cortez Masto. Thank you, Chairwoman and Ranking 
Member, for this hearing. Thank you all. I think we are done. 
You have pretty much said everything that we need to get 
started on.
    But let me say this, because I think you touched on this, 
Ms. Woods-Flowers, and that is this: The idea that this act 
that we are talking about, the BOLD Act, really sets the tone 
that this is a public health crisis, and we are creating an 
infrastructure that is necessary for that coordinated care plan 
that we have all been talking about today. It is a coordinated 
plan that we can tap into an infrastructure to address 
everything. And I say that because I just came back from 
Nevada--and I know there are Nevada folks here as well--and we 
had a roundtable discussion in northern Nevada, and I had a lot 
of my stakeholders at the table to talk about where are the 
gaps. Where do we need to work together? Because I will tell 
you, in Nevada we have a State Aging Division. They are 
phenomenal. You do an incredible job. An incredible job. And I 
so agree with you that now is time to coordinate and connect 
everybody together because of what we just heard.
    And, Ms. Gay Harden, I am going to touch on this. One of 
the gaps we have is the doctors--not that they do not want to 
be there, but they are not trained to think about this when you 
first come in and there is an early diagnosis or detection to 
connect you with the services that you need in your community. 
That is the No. 1 thing that I heard from the folks in Nevada 
that I was sitting with. How do we bring them in? And then you 
brought in the first responders. It is the same thing. So by 
creating this idea that this is a public health crisis, we have 
an infrastructure that now we can all tap into and start 
education, start early diagnosis, start the detection, and then 
start the help and assistance that is necessary for everybody 
to tap into it. That is the key. That is what we are trying to 
achieve here. So I so appreciate the questions and the comments 
that you had today.
    Let me touch on one area, which is the data collection, 
which for me is key. I am a data geek, and I think that is 
where everything starts, collecting the data and we learn from 
the data and it takes us in directions that are so important.
    But one of the things I am particularly concerned about 
when it comes to dementia-related health disparities is those 
that occur in our communities of color, American Indian and 
Alaska Native communities, LGBTQ communities, and people with 
intellectual and developmental disabilities.
    So, Dr. McGuire, let me ask you this: Can you tell me what 
kind of health disparities the CDC's data collection has 
already discovered?
    Dr. McGuire. Thank you very much for that question. Through 
our Behavioral Risk Factor Surveillance System, we are asking 
people to evaluate their own memory performance. We call it 
``subjective cognitive decline.'' And we also ask caregivers 
about their specific caregiving situation. So we know one in 
nine Americans report that their memory has worsened in the 
past year, and we know about one in four Americans is caring 
for a loved one or family member.
    So to answer your question, we do know disparity-wise, we 
do know that we see higher numbers of individuals that are 
African American that are reporting the subjective cognitive 
decline, also individuals that are Hispanic/Latino, and also 
American Indian and Alaska Natives. Through our work, we are 
working with some tribal organizations to increase awareness in 
tribal communities and to really try to think about risk 
reduction. So we have some messages and campaigns that are 
being developed about managing your blood pressure in middle 
age because we know that managing your blood pressure in middle 
age can help reduce your risk of having dementia later on. And 
we are developing those messages for tribal communities, for 
the providers, and for the general population as well.
    Senator Cortez Masto. Thank you. Is there anything that we 
have not talked about today--I am going to open it up to the 
panel--where you see gaps or other challenges that we should be 
focused on?
    Ms. Harden. I think there are gaps in teaching our young 
people about Alzheimer's and how their diet and lack of 
exercise might be a precursor. I talk to my kids about it, and 
I guarantee you, I get, ``Oh, Mom.'' You know, ``We have got to 
clean out the pantry.'' But they are interested in it, and they 
are changing their own diets. And I think I heard you say, 
Doctor, that mice, no matter what they ate, did you say, that 
if they were exercising, they were not showing signs of 
dementia. And so I thought that was just a really fascinating 
bit of information. Apparently you have to sweat if you 
exercise, which is not so hot, in my opinion, but I will do it 
if that is what needs to be done. So I think education for the 
youth and the young ones, really middle school, elementary 
school, because they are eating lots of sugar.
    Senator Cortez Masto. Thank you. Anyone else?
    Dr. Howell. I will just expand on that. So the challenge 
with exercise and diet is that, you know, under controlled 
conditions, a strain of mouse does not get the same degree of 
aging in the brain as those that do not exercise. The challenge 
is in the human population. We know very little about how our 
genetics might interact and change the way in which exercise 
might be important. When I talk about my exercise research, I 
often get somebody who stands up and says, ``Well, my father 
was a marathon runner and then developed Alzheimer's at the age 
of 60.'' And so, sadly, it is not simply exercise and everybody 
will be fine.
    So, what we can do is using both human studies and animal 
studies to really understand how the genetics interact with the 
environmental factors, such as exercise, such as diet, in order 
to reduce risk. What I think is really important, though, is 
for sure, as a population and society, it is going to help. We 
cannot predict who it is going to help, but overall it is going 
to help. It should reduce numbers, or it should reduce the 
incidence of Alzheimer's disease. So the more we can do to 
encourage our children, you know, and older to get out there 
and do some exercise and balance their lifestyle is going to be 
important.
    Senator Cortez Masto. Thank you. Thank you all. I 
appreciate you being here.
    The Chairman. Thank you very much, Senator, for your 
leadership.
    Senator Warren?
    Senator Warren. Thank you, Madam Chair, and thank you for 
your leadership on the issue of Alzheimer's disease. This is 
one of the toughest public health challenges facing America 
today, and I am very glad to be a cosponsor of the BOLD 
Infrastructure for Alzheimer's Act which you and Senator Cortez 
Masto introduced to attack the problem of Alzheimer's using a 
public health framework. I am glad to be sitting between you, 
also in purple, and that we are here today for this. You know, 
I think this bill is a critical step in the fight against 
Alzheimer's and Congress should pass it.
    There are a lot of things we need to do to tackle this 
disease: increase funding for Alzheimer's research, yes; raise 
awareness; improve screening; provide better access to 
palliative care; strengthen our support for caregivers. It is a 
long, long list out there. And today I just want to talk about 
one piece to all of this, and that is making sure that seniors 
with Alzheimer's get safe, quality care wherever they are 
living.
    Dr. McGuire, let me start with you. Why is it important 
that Alzheimer's patients, especially those in the early stages 
of the disease, receive high-quality care?
    Dr. McGuire. Well, it is important for those in early 
stages of the disease to receive high-quality care because we 
know diagnosing Alzheimer's disease and related dementia can 
help the patients and their family better manage the health 
care. We know that 95 percent of people who do have Alzheimer's 
and related dementia also have another chronic health 
condition. So it is important that when the person does have 
Alzheimer's and dementia that we continue to maintain and 
manage that chronic condition so we can prevent preventable 
hospitalizations, which can be costly and also very stressful 
to the person who has Alzheimer's, as well as their family and 
caregivers.
    Senator Warren. Thank you. You know, when a loved one gets 
an Alzheimer's diagnosis, families do everything they can to 
try to get quality care, and many families turn to assisted 
living facilities to help provide this care. Around 40 percent 
of the 830,000 Americans living in assisted living facilities 
have Alzheimer's, and the numbers are only going to increase as 
our population ages.
    Back in 2015, Senators Collins, Hatch, McCaskill, and I 
asked the Government Accountability Office to look at how 
states and the Federal Government oversee the care provided to 
Medicaid patients at assisted living facilities, and this year 
they got back to us with bad news. According to the GAO, over 
half the states do not adequately track the number of serious 
health and safety problems in assisted living facilities. More 
than a dozen states do not make this health and safety 
information available to the public.
    So if I could, let me ask you, Ms. Woods-Flowers, I 
understand you recently lost your father to Alzheimer's. I am 
very sorry for your loss.
    Ms. Woods-Flowers. Thank you so much.
    Senator Warren. Thank you. You spoke about how you worked 
with your sister to manage your father's care and how you chose 
to place him in an assisted living facility. In considering 
assisted living facility options for your father, was it 
important to you that the services he received were high 
quality and safe?
    Ms. Woods-Flowers. It absolutely was. We visited probably 
six different facilities, and we were looking for things, like 
we wanted to make sure that the facility was clean, that it was 
well staffed--at that time we did not understand what ``well 
staffing'' is, and I might just say a little bit more about 
that--and that it included activities, social, otherwise, so 
that his quality of life would be as good as it could be. We 
knew that he was not going to learn anything new, but we also 
knew that we wanted his brain challenged some part of the day, 
that we did not want him sitting in a chair all day waiting 
between meals, just waiting from one meal to the next.
    What we found was, the facility we found, we were very 
blessed by because it was clean and he was--he did have some 
activities until the last year when he was really unable to 
participate in those things.
    The biggest challenge that we saw was that the staff is not 
trained to deal with Alzheimer's patients. They would be fine 
in assisted living. They would be fine in a skilled nursing 
facility. They do not understand and we cannot find any law 
that says they have to be trained in any way to deal with an 
Alzheimer's patient. And they have different needs than 
somebody in assisted living and in skilled nursing. My father 
would not eat unless he was reminded to eat. He would not pick 
up any piece of--if it was a sandwich, he was not picking it 
up. So we made his menus every single day--every single week so 
that he could get things that he could pick up with a fork or a 
spoon, because he was not going to pick up that sandwich, he 
was not going to pick up a piece of pizza or anything. And 
those are very distinct things for Alzheimer's patients, and 
these are people taking care of them in those facilities, and 
they do not have that training.
    Senator Warren. I very much appreciate the point that you 
are making, and I appreciate your sharing your experiences 
here. Families are doing their part, and I believe that 
Congress needs to step up, too, and ensure that we collect data 
on where these health and safety violations occur, make sure 
that you have enough information up front to make a decision 
about the facility you want to choose for your father, and know 
what kind of care and what kind of training the people have 
there.
    I am working on legislation to fix this problem. I hope 
that we will be able to work together on it in this Committee. 
I think this is important. I understand. The fight against 
Alzheimer's is a fight for patients, it is a fight for 
caregivers, it is a fight for families, it is a fight for 
communities. And it is an honor to be here with all of you in 
this fight.
    Ms. Woods-Flowers. Thank you so much, Senator.
    Senator Warren. Thank you.
    The Chairman. Thank you, Senator.
    The very patient Senator Jones.
    Senator Jones. You have to be patient when you are number 
99 in seniority.
    [Laughter.]
    Senator Jones. Thank you, Madam Chairman and Ranking Member 
Casey, for doing this, and thank you to all the panelists. And 
for all of the sea of purple out there that I am seeing, thank 
you for all that you are doing. Ms. Woods-Flowers, thank you 
especially because I always appreciate a South Carolinian who 
can come in and give testimony without an accent, which is 
really nice.
    [Laughter.]
    Senator Jones. This is important to so many of us. It all 
hits us on a very personal level. My best friend's Dad, who was 
my second Dad, died a number of years ago. I watched him go 
down, and then a few years ago, it hit my Dad. And he was a 
Navy man as well and is in assisted living now. Dad was the 
strongest man I have ever known, short in stature but like a 
rock in both his physical stature as well as his integrity and 
character. And it is, you know, a very sad Father's Day--he is 
still alive but to see him in the state he is in, because it 
affected not just his cognitive abilities but he's also been 
affected neurologically to where I walked him into the hospital 
a couple years ago, and he has never walked again. And it is 
very, very difficult.
    And it is especially difficult on my Mom. I do not say she 
is a caregiver in the sense that she is working and constantly 
doing things. She is in the assisted living facility next door. 
But she visits him about every day, and just to see the man she 
has lived with for almost 69 years after a 2-week Navy 
courtship, I mean, literally first date on Wednesday, 
engagement on Sunday, and 2 weeks later marriage, and 69 years 
later she visits him every day. The emotional toll for her is 
extraordinary. I deal with it every day when I try to call back 
home and talk to her.
    So this is really important to all of us, and it is why, 
Madam Chairman, I am happy--the BOLD Act was introduced before 
I got here, but I am happy to add my name as a cosponsor.
    The Chairman. Thank you so much.
    [Applause.]
    Senator Jones. My question is a little bit more practical 
and probably a little bit more personal, given my age, and I am 
a first generation with someone who has this disease. We talk 
about early detection, but where is the tipping point where 
someone should recognize maybe I need to see someone about my 
memory. We all lose our keys, we do things. As we age, we are 
going to have memory issues. How do we recognize, how do we 
talk to people, whether it is through legislation or just the 
education process, about early detection? And where is the 
tipping point to literally go see a doctor and say, ``Maybe I 
need to look at this''? And I think, Dr. Howell, maybe 
Secretary Osborne, maybe you two are the best, but, you know, 
Dr. McGuire, maybe you can chime in, too, just anybody.
    Dr. Howell. Yeah, I mean, that is a tough question. 
Actually through education that we have been doing with the 
Alzheimer's Association in Maine, there are ten ways of 
recognizing it. There is no single way to say, OK, here is the 
tipping point. Losing your keys but finding them again is not 
too much of a worry. That should be fine. Repetitive behavior 
is one thing that people talk about, forgetting that they have 
said something or done something very recently. And I think for 
early diagnosis it is really important to diagnose prior to any 
signs of memory loss. By the time there is significant memory 
loss that is recognizable in an individual, there may well be a 
lot of pathology in the brain that has not been detected. And 
so when we think about early diagnosis in our animal studies, 
we think more about, you know, way before cognitive decline or 
cognitive changes, and we think of things like blood, changes 
in the blood, potentially a blood test for high risk for 
Alzheimer's. This is something that we are really all working 
hard on.
    A retinal exam, an eye exam is another thing that could be 
possible. The retina is a piece of the brain sticking out of 
the skull, very easy to access, very cost effective to assess. 
We are really only beginning to explore the potential for early 
diagnosis by something other than cognitive changes, which I 
think are very important and for all of the reasons that have 
been suggested in terms of saving money. But in terms of 
treatments, you even maybe want to consider treatments prior to 
cognitive decline.
    Senator Jones. Secretary Osborne, do you want to add 
anything to that?
    Ms. Osborne. Sure, I appreciate that. You know, in part of 
the comments that I rendered, I talked about the 
destigmatization of Alzheimer's disease. Like many in the room, 
I had a family member recently that we were intervening, 
actually. We realized that things were getting a little bit out 
of control for him and his wife. Married for 64 years, and he 
said to me that he was embarrassed to tell anybody the signs 
that his wife was having, you know, very humble. They had a 
little card shop that they ran in the Scranton area, and they 
knew a lot of folks in the community. He did not want people to 
know what he was dealing with on a daily basis. So even for him 
to talk to us about, you know, how do I not be embarrassed that 
I am seeing these signs, but who do I go to? He did not even 
have a diagnosis. His physician never shared with him, ``Your 
wife has Alzheimer's disease,'' just said, ``oh, you know, it 
is memory loss. It is this, it is this. Do not worry about 
it.''
    So how do we get to that early detection, that detection at 
all, connecting them with services and that they are not afraid 
of talking about it?
    One friend told me over this past weekend, knowing that I 
was coming here to Washington today, they run an assisted 
living facility, so for the Senator before you and the comments 
made about assisted living, I appreciate them very much, 
because in those facilities every day we have caregivers 
helping caregivers who are dealing with the challenges that 
families are facing, where they are exhausted, they are 
frustrated, they are guilt-ridden. They are worried about how 
they are going to pay for that level of care. What happens 
after their money runs out? And they all point back to the 
minute that they are rendered that diagnosis and hear it for 
the first time, the response is usually a pretty palpable 
silence, that there is such a stigma attached to, ``Oh, my God, 
this happened just now to me and my family.''
    So the more we can talk to folks within our communities 
about how to not be embarrassed, about how to look for those 
signs--I love the program that was mentioned earlier with the 
Administration for Community Living. You know, how do we ensure 
that we are doing that in all 50 states and every community 
within those 50 states. That is what is so exciting about the 
BOLD Act, to get that infrastructure in place that we are 
better coordinating, communicating, and collaborating to make 
sure that these services, these supports, these programs are in 
the hands of the Americans who need them.
    Senator Jones. All right. Well, thank you.
    Dr. McGuire, do you want to say something real quick?
    Dr. McGuire. Yes, please. So from our Centers for Disease 
Control and Prevention data, we know that approximately half of 
people who are experiencing changes in their memory that is 
worse in the past year are actually talking to their health 
care providers. So my colleagues on the panel here have 
mentioned stigma and awareness. So we do need to reduce the 
stigma. We need to make people know it is OK to talk with their 
health care provider, and just because you are experiencing 
memory loss or declines in your memory does not mean you have 
Alzheimer's disease. You need to see a health care provider to 
get your symptoms checked out, to rule out any possible 
treatable conditions that may be causing the symptomatology, 
and the Medicare annual wellness visit does cover cognitive 
screening and assessment. And so there are mechanisms out there 
for Americans to get their cognitive screening done, and we 
just have a lot of work to do together to move this forward.
    Ms. Harden. I have a thought. I do not have to show any 
signs of breast cancer to get a mammogram, so maybe there is no 
tipping point. Maybe it becomes something so common that we 
test for it before.
    Senator Jones. Excellent. Thank you to the panelists.
    Thank you, Madam Chairman, for calling this hearing. I 
appreciate it very much.
    The Chairman. Thank you very much, Senator. Before you have 
to leave, I want to give an update on the number of cosponsors 
because due to the efforts of this group and your joining us, 
we now have a total of 40 cosponsors, including me.
    [Applause.]
    The Chairman. And just today, in addition to picking up 
Senator Jones, we picked up Senator Donnelly, Senator 
Gillibrand, and Senator Bennet, just so those of you who are 
from those states know that it counted.
    [Applause.]
    The Chairman. I want to thank all of our witnesses here 
today for your testimony. You have really made a difference in 
coming forward and helping us to better understand the personal 
and the economic toll of this devastating disease, the hope 
that we all can have as we embrace a new approach, the public 
health approach, the research that is going on, the 
collaboration that Secretary Osborne referred to so often. And 
it gives me hope that as we continue to work on this, we are 
going to see effective treatments, means of a prevention, and 
someday a cure. And it will be because of the work, the 
passion, the energy of all of you who are such extraordinary 
advocates.
    I know that each of you here has been touched in some way 
by this disease, and sharing your views, your experiences, 
whether as a caregiver or as someone who has been affected more 
directly--actually, caregivers are very directly affected, as I 
know. There are no two stories that are alike, but each case of 
Alzheimer's disease causes a ripple effect through the entire 
family and through our communities, and that is why we need a 
new public health approach. That approach is a bold one, and it 
is one that I believe will help us move forward.
    Last night at your wonderful dinner, which was so 
inspiring, one of the advocates put it best when she said, 
``Let us make Alzheimer's disease a memory.'' And I thought 
that was such a wonderful way to put it. So I am stealing that 
line from now on.
    [Laughter.]
    The Chairman. And when I speak about Alzheimer's disease 
and the work that I am doing, that is how I will end my 
speeches.
    I do want to take a moment today to thank my staff, which 
has worked so hard, and Senator Casey's staff as well, and to 
acknowledge and thank Dr. Melissa Batchelor-Murphy. Melissa has 
served for the past 6 months as a health and aging policy 
fellow on our Aging Committee staff. She came to us from the 
Duke School of Nursing and brought with her expertise in 
geriatrics and specifically dementia care. So this marks 
Melissa's last hearing with us, and now she is going to go back 
into academia. But she told me that we can still call her 
often. So, Melissa, thank you very much for all of your work, 
and we value all of your contributions.
    [Applause.]
    The Chairman. Senator Jones, do you have any final words?
    Senator Jones. Just a moment, Chairman Collins, and let me 
again thank you for the incredible work and dedication not just 
for these hearings but for the work you do. And I really 
appreciate that, and your staff and Senator Casey's staff.
    And to all of you here, not just our witnesses but to 
everyone here, not just for the work you do, but for raising 
the awareness because that is just so important. It is great to 
research. It is great to deal with people every day. But 
raising the awareness is so important for folks to try to deal 
with this disease and make it a memory. And you are having an 
effect. I can tell you on a personal level. On Father's Day 
this year, my family gave me a new gym bag and athletic shoes 
and everything to encourage me to do those kinds of things that 
I need to be doing in my life.
    As the population ages, the number of people living with 
this disease and the number of loved ones, friends, and 
neighbors are only going to grow unless we do something. We 
have to do everything we can to advance research into treatment 
for paracommunities and health systems to meet the challenge of 
the future. And I am looking forward to being on this bill, to 
continue to work with colleagues in the Senate on a really--
this is a bipartisan effort. This has no political stripes 
whatsoever to keep up the fight. And I encourage everyone here 
to keep up the fight as well.
    So thank you, Madam Chairman. Thank you.
    The Chairman. Thank you very much, Senator.
    [Applause.]
    The Chairman. Let me end this hearing by thanking the 
Alzheimer's Association and AIM for all of your work and for 
encouraging all of these advocates to come to Washington. My 
thanks to each and every one of you.
    Committee members will have until Friday, June 29th, to 
submit questions for the record, so there may be a few more 
questions coming your way.
    This concludes our hearing. Thank you so much for being 
here.
    [Applause.]
    [Whereupon, at 4:33 p.m., the Committee was adjourned.]

  
      
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                                APPENDIX

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                      Prepared Witness Statements

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Prepared Statement of Marcia Gay Harden, Academy Award-Winning Actress 
             and Family Caregiver, Los Angeles, California
    Thank you Chairman Collins, Ranking Member Casey, and members of 
the Committee for this opportunity to testify today on the impact of 
Alzheimer's disease on my family and families across the country.
    As I look around me this morning, I'm grateful to see so many 
people gathered in this room. But a scary statistic tells us that one 
or more of us, and certainly one or more of our children, will develop 
Alzheimer's disease. There is no known cure, and the symptoms are 
devastating; every memory of life is wiped away, including forgetting 
how to breathe and how to swallow. To date, there are no survivors of 
Alzheimer's. Unlike cancer and AIDS, many individuals living with 
Alzheimer's, like my mother, can't speak for themselves, because they 
reach a point in the disease where they are no longer able to speak out 
about it. Alzheimer's is an insidious, cowardly disease that needs all 
of our voices, the voices of families, of our elected officials, and 
the voices of our nation to galvanize and find a cure. It is my prayer 
that with your help, advocacy, and funding, this generation is able to 
celebrate the first survivor of Alzheimer's disease. Congress has 
worked in a wonderfully bipartisan manner to nearly quadruple 
Alzheimer's and dementia research funding at the National Institutes of 
Health (NIH) since 2011, and continues to be deeply committed to 
providing the Alzheimer's and dementia community with funding to move 
research forward. However, more needs to be done so we can discover the 
cause of Alzheimer's and find a cure.
    Every 65 seconds someone in the United State develops Alzheimer's 
disease, and that number will nearly double by 2050. According to the 
Alzheimer's Association, an estimated 5.7 million Americans are living 
with Alzheimer's in 2018. Almost two-thirds of Americans with 
Alzheimer's are women. In truth, it frustrates and saddens me to hear 
these numbers. More importantly, it angers me--and I have found anger 
to be a great motivator. Amazing what a person can accomplish when they 
get pissed off enough.
    Alzheimer's disease first came into my life in 2011 when my strong, 
witty, vibrant mother was diagnosed. As a daughter and a caregiver, I 
hope my story will bring awareness to this horrible disease.
    Let me tell you a little bit about my mom, Beverly Harden. She is 
one of the bravest women I have ever met. She raised five children 
while being stationed all over the world as my dad pursued his career, 
serving our country as an officer in the United States Navy. For months 
at a time, mom would be alone with five children to feed, bathe, teach 
and love. While we were living in Japan, she discovered ikebana--the 
ancient art of Japanese flower arrangement. She found that ikebana 
could transform her home into a place of spiritual reflection and 
beauty. Ikebana's most important rule of forming an asymmetrical 
triangle with the flowers--representing shin, soe, and hikae--or 
heaven, earth and man--kept her grounded and connected to the beauty of 
life through nature. Mom went on to become the President of Ikebana 
International's most distinguished chapter, Chapter 1, right here in 
Washington, DC, but she doesn't remember any of that. She accompanied 
me to the Oscars in 2001. She doesn't remember that. Her beloved 
husband passed away in 2002. She doesn't remember that either.
    One of the first times I noticed my mom having memory problems was 
around 2005 when we were traveling to Canada. We had boarded the plane 
and she couldn't remember where she had just put her passport--so she 
checked her purse. Several minutes later, she forgot again, and so 
checked once more. And again, a third time. She became frantic, she was 
aware that something was wrong and that she shouldn't keep forgetting 
where her passport was. She didn't want my help; she was in anguish, 
wanting to string the moments together herself, with no gaps. Over 
time, those kinds of moments became more frequent and in 2011 she was 
diagnosed with Alzheimer's disease.
    As we all know too well, Alzheimer's disease causes memories to 
evaporate. One minute a person can recall a detail of their favorite 
novel, the function of a spoon, or the fact that tulips bloom in 
spring, and the next minute it has disappeared. Eventually the names, 
and finally faces of loved ones, are also memories that have 
evaporated, and soon, the meaning of their lives evaporates--so it is 
for my mother.
    Today 50 million people worldwide suffer this evaporation. Rich, 
fertile minds, Ph.D.'s and scientists, plumbers and dancers, presidents 
and senators, doctors, inventors, teachers and firemen, the disease 
doesn't discriminate. These people are now deprived of the validation 
of the memory of their lives. They don't remember who they were. They 
don't know who they are, they forget how to talk, how to walk, how to 
arrange flowers. Watching my mom forget herself and her many 
contributions to life--it pisses me off. So my siblings and I do what 
my father taught us to do--we ``pull ourselves up by the bootstraps''--
never mind that we wear high heels. We know what he meant!
    As a family, we focus on her care, and on maintaining her dignity. 
We've sold my mother's home in anticipation of the mounting costs of 
caregiving. It was one of the hardest decisions that we've had to make 
so far; the loss of her home is something that we all felt, with such a 
dread and sense of helplessness that it has somewhat devastated us. I 
keep reminding myself we are doing the best we can, with the tools and 
knowledge that we have. We want things to be as they were before but 
the disease continues to march forward. Our funds are limited, these 
are uncharted waters, and we've had to adjust, to prepare for the 
unknown, to calculate all possibilities and most importantly ensure her 
comfort, care, and safety. My mom now lives in a smaller house, located 
on a lake with birds and familiar neighbors close by. It is near 
medical resources and a church, as well as my sisters who shower her 
with love and visits, and caregivers who take wonderful, dutiful and 
exacting care of her as she ages with Alzheimer's. But we don't know 
what the future holds, and we are scared. Will we eventually have to 
give up our own jobs to care for my mother? What will happen when the 
money runs out?
    Did you know eighty-three percent of help provided to older adults 
in the United States comes from family members, friends or other unpaid 
caregivers? And nearly half of those caregivers provide care to people 
with Alzheimer's. Last year, caregivers of people with Alzheimer's or 
other dementia provided an estimated 18.4 billion hours of unpaid 
assistance--valued at $232.1 billion--unpaid care.
    It infuriates me that this is how Alzheimer's becomes a stealthy 
thief, robbing families of their finances and security, and forcing its 
victims to live only in the moment. For my mother there is only the 
present, with no connection to her past, without the rich tapestry for 
her life to tell her story. No dimension, just dementia. I see her 
concentrate, I see her try to speak the right words, I see her try to 
connect the memory to words and through it all, I see her eyes smile, 
but it seems to me, the smile is a little bit wounded these days.
    There is no medicine yet, no surgery yet to grasp the dangling 
thread of memory, to rethread the needle and weave it back into her 
tapestry and connect thoughts to memory and life experience, to allow 
her to remember her life. Instead, as the patient and family wait 
impatiently, more threads unravel, more dangling thoughts, the tapestry 
of her life slowly disintegrates, the picture is blurred and memory is 
lost.
    This disease has no dignity, and yet, my mother has somehow managed 
to keep hers. And even as the pitch-black darkness of this hideous 
disease advances, the core of my mom--her elegance and humor and love 
of family and God--has remained the same. I think of it as her light 
that cannot be extinguished.
    As I watch my mom decline, I find myself worrying about me or my 
children having Alzheimer's. My mom always told me to repurpose my 
pain, to do something useful, so I read a lot about the disease and 
ways to reduce my risk--things like exercising, a healthier diet, and 
sleeping better.
    Alzheimer's has changed me. I've become an outspoken advocate. I've 
done campaigns to raise awareness of the early signs of dementia and 
Alzheimer's. The more I learn about the disease, the more motivated I 
am to make sure that people are educated about it.
    It is so important for people and doctors to be aware of the early 
signs of Alzheimer's disease and other dementia. In 2015, I partnered 
with the Administration for Community Living at the Department of 
Health and Human Services for a nationwide campaign called ``What is 
Brain Health?'' that aimed to raise awareness about brain health while 
empowering older adults to make the most of their brains as they age--
with a particular emphasis on early detection and diagnosis. I learned 
that approximately 50 percent of individuals with Alzheimer's and other 
dementia have not been diagnosed and of those who are diagnosed with 
Alzheimer's only about 33 percent are aware of their diagnosis. My 
participation in the ``What is Brain Health?'' campaign only solidified 
my belief in the value of raising awareness about Alzheimer's and brain 
health, because when people are diagnosed earlier, they can have hard 
but empowering conversations with family that will allow them to take 
some control over their destiny. They can take steps to create a care 
plan with their families and their physician. They can control what 
time they have left before the darkness takes over. Early diagnosis 
also allows people to access available treatments, participate in 
support services, and if they choose to, enroll in clinical trials.
    Last month, I worked with Maria Shriver and the Women's Alzheimer's 
Movement during their national initiative Move for Minds--and was 
especially hopeful at the work they are doing. I learned from them that 
women are at a greater risk for this disease. According to the 
Alzheimer's Association, 2 out of 3 brains that develop Alzheimer's 
belong to women. Why? I've always known our brains are different and I 
was inspired by the call to action to research the why of it all--the 
how of it all. What role hormones, sleep, having babies and menopause 
may play in Alzheimer's disease? We must fund more research on women's 
brains.
    As scientists continue to search for a way to prevent, cure or slow 
the progression of Alzheimer's through medical research, public health 
can also play an important role in promoting brain health and cognitive 
function, and reducing the risk of cognitive decline. It is imperative 
that we as a country invest in a nationwide Alzheimer's public health 
response to achieve a higher quality of life for those living with the 
disease and their caregivers.
    One of the ways we can make that investment is through legislation 
introduced by Chairman Collins and Senator Cortez Masto, called the 
BOLD or Building Our Largest Dementia Infrastructure for Alzheimer's 
Act. Endorsed by the Alzheimer's Association, the BOLD Infrastructure 
for Alzheimer's Act would create an Alzheimer's public health 
infrastructure across the country to implement effective Alzheimer's 
interventions and focus on important public health issues, such as: 
increasing early detection and diagnosis, reducing risk, and preventing 
avoidable hospitalizations.
    Every little act we do, does make a difference. Caregivers always 
feel guilty they can't do enough, but I want caregivers to know that we 
have to be gentle with ourselves. Being in the moment with the person, 
knowing they have an ability to recognize the familiar even if they 
can't verbalize it, is comforting. Once my mother said to me: ``I don't 
know who you are, but I know you are important to me. When you came 
into the room, your face made me feel happy.'' I've learned to say to 
my mom, ``It's OK if you don't remember me, I will always remember 
you.''
    There is nothing good about Alzheimer's--it is not a disease where 
one can make lemonade from lemons. When I think of my mom, I think of 
the beauty of her Ikebana, her delicate creations with lines for shin, 
soe and hikae, and how she was before. I don't want Alzheimer's to be 
her legacy. And yet, through it all, my beautiful mother has managed to 
teach me, even through the destruction of her capabilities and 
creativity, that there is such a thing as an indestructible spirit. It 
is because of that indestructible spirit that I know she would want to 
help others by raising awareness about this horrible disease. Through a 
daughter's eye, I share her story in hopes of keeping her legacy alive.
    The battle against Alzheimer's is a battle we must win. If we 
don't, it will cripple our Nation. I want to close with some words from 
my Navy Captain father who was fond of quoting General Patton. Their 
spirits were similar despite their different military branches. This 
was one of his favorite Patton quotes: ``All men are afraid in battle. 
The coward is the one who lets his fear overcome his sense of duty. 
Duty is the essence of manhood.''
    We must pull ourselves up by the bootstraps. We must do our duty to 
the American people and fund and fight this battle, and we will win.
    Thank you for your time.
    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
    
     Prepared Statement of Cheryll Woods-FlowersFamily Caregiver, 
                     Mount Pleasant, South Carolina
    Chairman Collins, Ranking Member Casey and members of the 
Committee. Thank you for the opportunity to testify about my 
experiences as a caregiver for my late father. I hope my story will 
bring more awareness to this awful disease, called Alzheimer's.
    My father, Richard Allen Novak Sr., passed away in February after 
living with Alzheimer's disease for nearly 16 years. When he was 18, my 
dad left his home in Wisconsin to join the U.S. Navy, which led him to 
Charleston, South Carolina where he would meet and fall in love with my 
mom. Dad worked hard throughout his career in the Navy and after 
retiring, he worked in Civil Service, retiring in 1988, and then 
started a successful woodworking business. He was always willing to 
help anyone who needed him, sometimes without accepting payment. He 
will be remembered for his love of dogs, people, his amazing Christmas 
light display that always drew lines of cars, and his love for his 
family including his six children, 11 grandchildren and 14 great 
grandchildren.
    Before my dad was diagnosed with Alzheimer's disease, it was not 
something that my family knew much about. My mom started noticing that 
dad seemed to be having trouble remembering where he left things; he 
was taking longer with errands and kept forgetting things he was 
supposed to be doing. In 2003, my parents took a trip to Florida, which 
they had done many times before, dad left at 8 a.m. to get a tire fixed 
on the car, and at about 4 p.m. mom called us and said they could not 
find him. When we found him, he had been crying, had not eaten and did 
not have any money. It was truly an eye-opening experience. After that, 
we knew we had to get help. We took him to a specialist at the Medical 
University of South Carolina and after a few cognitive tests; he was 
diagnosed with Alzheimer's. He was on Aricept and Namenda, both of 
which he continued to take until the end. He was diagnosed at age 70 
and every day we lost a little bit more of him, including the last 5 
years when he did not recognize his children, grandchildren or other 
family members. Though he did not know us, he continued to express love 
to each person he encountered, showed gratitude when things were done 
for him and we were so happy to be around him.
    In a way, we were lucky that my dad was diagnosed so early in the 
disease. According to the Alzheimer's Association, only about half of 
individuals living with Alzheimer's have been diagnosed. When people 
are diagnosed early in the disease, they have time to work with their 
family and physician to engage in care planning, talk through financial 
decisions, and discuss support services. My dad's early diagnosis gave 
us that time to talk through decisions, start interventions like 
medications to mitigate symptoms, and gave him a better quality of life 
because we knew what we were up against.
    I believe it is important to make the public and health care 
professionals aware of the early signs of Alzheimer's disease. There 
needs to be a greater nationwide public health effort and 
infrastructure in order to increase early detection and diagnosis. 
Legislation like the BOLD Infrastructure for Alzheimer's Act will help 
to do that. It would create an Alzheimer's public health infrastructure 
across the country that would look to tackle certain Alzheimer's public 
health issues like increasing early detection and diagnosis. BOLD would 
accomplish these goals by creating Centers of Excellence across the 
country that would educate the public, public health officials and 
health care professionals on Alzheimer's, brain health and health 
disparities. It would work with State, local and tribal public health 
departments to implement interventions to increase early detection and 
diagnosis.
    After dad was diagnosed, my sister, Theresa, and I were named his 
Conservator and Guardian. We were his primary family caregivers. We 
were only able to do that because we lived nearby and we had the funds 
to keep him home as long as possible. We sold the house that my dad 
bought 55 years ago in order to be able to pay for his care. About 3 
years ago, we got to the point where it was time for him to live in an 
assisted living facility. We found a great facility nearby but it 
certainly did not come without significant expense. The average 
estimated lifetime cost of care for an individual living with dementia 
is over $340,000. In 2017, 16.1 million family members and friends 
provided 18.4 billion hours of unpaid care to people with Alzheimer's 
and other dementia at an economic value of over $232 billion.
    I do not believe there is a complete understanding of the cost of 
Alzheimer's disease on our society. Since 2011, Congress has worked in 
bipartisan fashion to nearly quadruple the funding for Alzheimer's and 
dementia research at the National Institutes of Health (NIH). We've 
made great strides but there is still so much further to go. 
Alzheimer's disease is the most expensive disease in America. In 2018, 
Alzheimer's and other dementia will cost the Nation $277 billion and by 
2050, those costs could be as high as $1.1 trillion. Research dollars 
are critical to solving this crisis that devastates families and will 
impact our economy.
    I've always believed that it is never enough to sit around and wait 
on someone else to do something. If not me, then who? About 4 years 
ago, I became an advocate with the Alzheimer's Association. I have met 
with my congressman to talk to him about making Alzheimer's research, 
care and support a national priority. Every year since 2014, I 
participate in the Walk to End Alzheimer's because I want to be part of 
the effort to eradicate this disease.
    These last few days, I joined more than 1200 advocates from across 
the country to make a difference here in Washington. We are here to 
advocate for the 5.7 million Americans living with Alzheimer's today, 
to raise awareness of the disease and to push for more research 
funding. Alzheimer's is the only leading cause of death in the U.S. 
that cannot be prevented, cured, or even slowed, but through medical 
breakthroughs we're working together to change that. I am here because 
I promised my dad that I would be his advocate and voice as long as I 
am able to and with hope that my children and grandchildren will not 
have to think about these issues because a cure will be found.
    As a caregiver and advocate, I am respectfully asking Congress to 
continue to make Alzheimer's research a priority and pass the BOLD 
Infrastructure for Alzheimer's Act to help other families get diagnosed 
early.
    This is my first father's day without my dad. Thank you for 
listening to our story and for all you have done. Please continue to 
join us in the fight to end Alzheimer's once and for all.
  

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