[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
--------------------------------------------------------------------------------------
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.]
=======================================================================
APPENDIX
=======================================================================
Prepared Witness Statements
=======================================================================
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.
[all]