TAKING AIM AT ALZHEIMER'S: FRONTLINE PERSPECTIVES AND CAREGIVER CHALLENGES
Summary
Senate Hearing 117-55 records the May 20, 2021 hearing of the Special Committee on Aging on Alzheimer's frontline perspectives and caregiver challenges, which met via Webex with Chairman Robert P. Casey, Jr. presiding. Casey said Alzheimer's affects over six million Americans and that more than 3.5 million Americans rely on home and community-based services. Ranking Member Tim Scott said Alzheimer's and dementia deaths rose 18 percent nationwide during the first wave of COVID and that Alzheimer's funding grew from $595 million in 2015 to $3.1 billion in 2021. Witnesses were Mark A. Supiano, Jennifer Manly, Peg Lahmeyer of The ARK of South Carolina and family caregiver Katelyn Montanez; a written response from Lahmeyer credits local support and small-dollar giving.
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“TAKING AIM AT ALZHEIMER'S: FRONTLINE PERSPECTIVES AND CAREGIVER CHALLENGES.”
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[Senate Hearing 117-55]
[From the U.S. Government Publishing Office]
S. Hrg. 117-55
TAKING AIM AT ALZHEIMER'S: FRONTLINE
PERSPECTIVES AND CAREGIVER CHALLENGES
=======================================================================
HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED SEVENTEENTH CONGRESS
FIRST SESSION
__________
WASHINGTON, DC
__________
MAY 20, 2021
__________
Serial No. 117-03
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
45-366 PDF WASHINGTON : 2022
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SPECIAL COMMITTEE ON AGING
ROBERT P. CASEY, JR., Pennsylvania, Chairman
KIRSTEN E. GILLIBRAND, New York TIM SCOTT, South Carolina
RICHARD BLUMENTHAL, Connecticut SUSAN M. COLLINS, Maine
ELIZABETH WARREN, Massachusetts RICHARD BURR, North Carolina
JACKY ROSEN, Nevada MARCO RUBIO, Florida
MARK KELLY, Arizona MIKE BRAUN, Indiana
RAPHAEL WARNOCK, Georgia RICK SCOTT, Florida
MIKE LEE, Utah
----------
Stacy Sanders, Majority Staff Director
Neri Martinez, Minority Staff Director
C O N T E N T S
----------
Page
Opening Statement of Senator Robert P. Casey, Jr., Chairman...... 1
Opening Statement of Senator Tim Scott, Ranking Member........... 2
PANEL OF WITNESSES
Mark A. Supiano, M.D., Professor and Chief, Division of
Geriatrics, University of Utah School of Medicine, Executive
Director, University of Utah Center on Aging, Salt Lake City,
Utah........................................................... 5
Jennifer Manly, Ph.D., Professor of Neuropsychology, Department
of Neurology and the Taub Institute for Research on Alzheimer's
Disease and the Aging Brain, Columbia University Irving Medical
Center, New York, New York..................................... 7
Peg Lahmeyer, Executive Director and Co-Founder, The ARK of South
Carolina, Summerville, South Carolina.......................... 8
Katelyn Montanez, Family Caregiver, Ephrata, Pennsylvania........ 10
APPENDIX
Prepared Witness Statements
Mark A. Supiano, M.D., Professor and Chief, Division of
Geriatrics, University of Utah School of Medicine, Executive
Director, University of Utah Center on Aging, Salt Lake City,
Utah........................................................... 37
Jennifer Manly, Ph.D., Professor of Neuropsychology, Department
of Neurology and the Taub Institute for Research on Alzheimer's
Disease and the Aging Brain, Columbia University Irving Medical
Center, New York, New York..................................... 46
Peg Lahmeyer, Executive Director and Co-Founder, The ARK of South
Carolina, Summerville, South Carolina.......................... 57
Katelyn Montanez, Family Caregiver, Ephrata, Pennsylvania........ 58
Questions and Responses for the Record
Mark A. Supiano, M.D., Professor and Chief, Division of
Geriatrics, University of Utah School of Medicine, Executive
Director, University of Utah Center on Aging, Salt Lake City,
Utah........................................................... 62
Jennifer Manly, Ph.D., Professor of Neuropsychology, Department
of Neurology and the Taub Institute for Research on Alzheimer's
Disease and the Aging Brain, Columbia University Irving Medical
Center, New York, New York..................................... 63
Peg Lahmeyer, Executive Director and Co-Founder, The ARK of South
Carolina, Summerville, South Carolina.......................... 64
Katelyn Montanez, Family Caregiver, Ephrata, Pennsylvania........ 64
Additional Statements for the Record
Alzheimer's Impact Movement and Alzheimer's Association Statement 69
TAKING AIM AT ALZHEIMER'S:
FRONTLINE PERSPECTIVES
AND CAREGIVER CHALLENGES
----------
THURSDAY, MAY 20, 2021
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The Committee met, pursuant to notice, at 9:34 a.m., via
Webex, Hon. Robert P. Casey, Jr., Chairman of the Committee,
presiding.
Present: Senators Casey, Gillibrand, Blumenthal, Warren,
Rosen, Warnock, Tim Scott, Collins, Braun, Rick Scott, and Lee.
OPENING STATEMENT OF SENATOR
ROBERT P. CASEY, JR., CHAIRMAN
The Chairman. Good morning, everyone. The Senate Special
Committee on Aging will come to order. First and foremost, I
want to welcome all of the advocates from the Alzheimer's
Association who are watching from home. This Committee is
privileged to host this hearing every year in partnership with
the association. I especially remember Senator Collins working
so hard to make sure this hearing happened every year when she
was Chair.
Today's hearing takes place as families across the Nation
continue on a long journey to heal from the horrors of this
pandemic. We cannot forget the dreadful impact of COVID-19. No
community, no family was spared, and more than 587,000 lives
have been lost in the United States.
Through the American Rescue Plan, working families have
more money in their pockets, our children are returning to
school safely, and everyone who wants to can be vaccinated.
Just last week, the Biden Administration announced guidance to
carry forward new funding for home and community-based
services. This funding can bring a measure of relief to
millions of families, including those with Alzheimer's disease
and other dementias. President Biden's Jobs Plan includes
policies to help Americans who have dementia, to help their
families and the workers who care for them.
We know that Alzheimer's disease is an unforgiving and
cruel condition. That might be an understatement. This affects
over six million Americans, including in my home State of
Pennsylvania 280,000 people. At today's hearing, our witnesses
will testify about the hardships of Alzheimer's disease and
other dementias. We will hear about the debilitating and
progressive nature of this awful disease and the terrible toll
it takes on family caregivers.
I am pleased to lead the effort here in the Senate every
year to advocate for more research funding at the National
Institutes Of Health. we have a long way to go to focus on this
issue.
We will also hear today about, as I mentioned, home and
community-based services, which provide, of course, a lifeline
for millions of American families. More than 3.5 million
Americans, including adults with dementia, rely on services
like help with groceries and shopping or bathing or household
work in order to stay healthy, to stay safe and independent for
as long as possible. I have heard from Pennsylvanians across
our Commonwealth, including dementia caregivers, about how
important home and community-based services are to families.
We are blessed today to have a great panel of witnesses,
and from my home State of Pennsylvania, from Lancaster County,
Katelyn Montanez, who will share her powerful story. Katelyn's
story and those like hers compel us--compel us--to invest in
these services. The President's plan will help bring long
overdue help to families who struggle day in and day out to
care for their family members, their friends, and their
neighbors.
I look forward to hearing from our witnesses about all
these issues today. Before we begin I want to remind Committee
members and witnesses to please keep your remarks and questions
to five minutes. The countdown timer can be viewed alongside
the other participant windows on Webex. Following opening
remarks, Senators will ask their questions based on seniority.
I ask that members have their cameras turned on a few minutes
prior to their questions.
To Ranking Member Scott, I am pleased to turn it over to
you for your opening remarks.
OPENING STATEMENT OF SENATOR
TIM SCOTT, RANKING MEMBER
Senator Tim Scott. Thank you, Chairman Casey, and thank you
for your commitment to such an important issue. To those of you
joining us today, we are so thankful that you are here, and we
are so thankful that you have led the fight for all of us on
this really important issue.
There is no doubt that the COVID impact on Alzheimer's and
the caregivers was devastating. Frankly, I think about folks in
my home State of South Carolina, Karen Sheppard of Monck's
Corner, who takes care of her mother. Her mother was diagnosed
eight years ago. Before COVID, she used to have a private
sitter that was able to come and help out some so that she
could go to her own doctor's appointments. When businesses
started shutting down, she lost her respite care. During the
first wave of COVID, we saw Alzheimer's and dementia deaths
increase by 18 percent nationwide. Far, far too many people.
Last month, I along with 23 Senators sent a bipartisan
letter to Secretary Becerra asking him to target the remaining
$23 billion of COVID relief to people with Alzheimer's. Under
the previous administration and two years prior, funding for
Alzheimer's increased by 420 percent, from $595 million in 2015
to $3.1 billion in 2021. Linda Talbert, from Greenville, South
Carolina, who lost her husband to this disease at the age of
56, pointed out, ``This is not''--and I love this comment, and
Chairman Casey will love it as well: ``This is not a red issue
or a blue issue. This is truly a purple issue.'' It is the
color of the tie that I am wearing today and, frankly, it is
what we both know is one of the reasons why this hearing is
perhaps one of the more important hearings we will have all
year. We are bringing not a partisan coalition together. We are
bringing an American coalition together. The American family is
focused on an issue that we know is devastating families
throughout this country. By doing so, we believe that by
bringing more attention to this important topic, we will be
able to help bring more resources and more expertise to the
table. We are so thankful that we have the host of panelists,
the experts that we have to talk about an issue that they are
personally impacted by and that they continue to strive for
solutions to help the next wave of caregivers, the next wave of
folks impacted by that. For that we are eternally grateful for
the experts that we have.
I will say that when you think about it, Mr. Chairman, as
you noted in our last hearing, nearly half of all the people
with Down Syndrome will develop Alzheimer's, and nearly one-
third will be by the age of 50. Seventy percent of women with a
prenatal diagnosis of Down Syndrome have abortions. I thank you
for recognizing our shared commitment to improving the lives of
people with Down Syndrome and Alzheimer's.
When it comes to doing the best with what we have, South
Carolina is truly a trailblazer. In 1988, South Carolina
launched the Nation's first Alzheimer's disease registry, which
informs clinical research and planning for medical and social
services. While we are leading the fight, we are also in the
trenches. South Carolina has the sixth highest death rate for
Alzheimer's in our Nation. Sixth. Patty Younts of Pawleys
Island, in 2012 Patty's husband, Howard, was diagnosed with a
rare type of Alzheimer's disease that causes severe visual
impairment. He sees the world as if he is looking through a
broken mirror. Patty is an advocate and a caregiver, and she
and Howard just celebrated their 35th anniversary. Happy
anniversary, Patty.
People like Karen, Linda, Patty, our witnesses today, and
all of you joining virtually, give us hope. You give me hope.
The Alzheimer's Association says the first survivor of
Alzheimer's is still out there, and I know they are right, and
I believe that today's hearing will help us hit the accelerator
in that direction.
I look forward to hearing from our witnesses today and
working with them to find that first survivor and so many more.
Thank you, Chairman.
The Chairman. Ranking Member Scott, thanks very much.
We are going to turn to our witness introductions in a
moment, but I want to acknowledge the Senators who are already
here. We know that this is a day when Committee members have a
number of hearings at the same time. Some have three at the
same time; some have four. I know that Senator Collins is with
us, Senator Blumenthal, and I will turn to Senator Lee, who
will do our first witness introduction. Senator Lee?
Senator Lee. Thanks so much, Mr. Chairman, and thank you,
Ranking Member Scott. It is a real honor to introduce Dr. Mark
Supiano who hails from our great State of Utah. Dr. Supiano is
a respected geriatrician and a professor at the University of
Utah School of Medicine. He is someone who has spent 30 years
providing primary care for older adults. He is the chief of
geriatrics and the executive director at the University of Utah
Center on Aging.
Dr. Supiano's interests stem really from his passion to
care for a complex and vulnerable population. He has been
regularly cited as among the best doctors in America. As a
geriatrician, Dr. Supiano is on the front lines in caring for
people with Alzheimer's disease and related dementias.
His research focuses on the age-related increase in blood
pressure which has emerged as a key link to developing
Alzheimer's. He is also a member of the prestigious Alzheimer's
Association Research Roundtable, supported by the BOLD
Infrastructure for Alzheimer's Act, enacted into law in 2018.
Thank you, Dr. Supiano, for all of your great work and for
being here with us today. We look forward to your testimony.
Thank you, Mr. Chairman.
The Chairman. Senator Lee, thanks very much.
I know that we are going to have some other introductions
by Committee members, but I might jump out of order here and
turn to Ranking Member Scott for the next introduction.
Senator Tim Scott. Thank you, Chairman Casey.
I am pleased to introduce someone who is truly a godsend to
Alzheimer's patients and caregivers in the Palmetto State: Peg
Lahmeyer. Peg is a civic leader in the metropolitan Charleston
area and throughout the State of South Carolina as well as the
Nation. She is co-founder of the ARK of South Carolina where
she has been the executive director for 25 years. That is
awesome. We love that type of longevity and support.
In 1996, she first developed the ARK as a community
outreach program at St. Luke's Lutheran Church in Summerville.
She offered respite once a week to families living with
Alzheimer's disease or related dementia. Over the years, the
ARK has expanded by both adding programs, including training
police officers and other first responders, and extending its
services to underserved areas in both rural and urban South
Carolina.
Last year, Peg was named Trailblazer of the Year by the
Greater Summerville/Dorchester County Chamber of Commerce.
Before founding the ARK, Peg and her husband, Jim, were
caregivers for her mother who had Alzheimer's and moved from
Alabama after Peg's father passed away back in 1990.
Thank you, Peg, for your important work and for being here
with us today. We look forward to your testimony.
Thank you, Mr. Chairman.
The Chairman. Thank you, Ranking Member Scott.
I will do the next two introductions, but before I do that,
I want to acknowledge that Senator Rosen is joining us, and we
will be acknowledging Senators as they appear.
I wanted to introduce Dr. Jennifer Manly. She is a
professor of neuropsychology at Columbia University in New York
City. Her research aims to improve the diagnostic accuracy of
neuropsychological tests for detecting cognitive impairment and
Alzheimer's disease among African American and Hispanic elders.
Dr. Manly will speak about the nature and progression of
Alzheimer's disease and the populations at highest risk for
acquiring the disease.
Our final witness that I will introduce is a Pennsylvanian,
Katelyn Montanez. Katelyn is a resident of Lancaster County, in
particular, Ephrata, Pennsylvania. She is a social worker and
caregiver to her father, who was diagnosed with younger-onset
Alzheimer's in 2015. Katelyn will share her father's journey of
receiving his diagnosis and accessing much needed supports,
including home and community-based services. She is a strong
advocate for people living with Alzheimer's disease across the
country.
Katelyn, thanks for being with us, and we are looking
forward to your testimony.
We will now turn to our witnesses for their statements. We
will begin with Dr. Supiano. Dr. Supiano, you may begin your
testimony.
STATEMENT OF MARK A. SUPIANO, M.D., PROFESSOR AND
CHIEF, DIVISION OF GERIATRICS, UNIVERSITY OF UTAH
SCHOOL OF MEDICINE, EXECUTIVE DIRECTOR, UNIVERSITY
OF UTAH CENTER ON AGING, SALT LAKE CITY, UTAH
Dr. Supiano. Well, thank you, and good morning, everyone.
Chairman Casey, Ranking Member Scott, and members of the
Special Committee on Aging, thank you for providing me this
opportunity to present my perspective on the exciting
approaches that are available today supporting the goal to take
aim at Alzheimer's Disease and Related Dementias, or ADRD. In
addition to the kind introduction that Senator Lee provided for
me in my roles at the University of Utah, I also want to point
out that I am a member of the American Geriatric Society Board
of Directors.
In my primary care geriatrics medical home clinic, with the
support of an interprofessional team of providers, I evaluate
patients who present with cognitive concerns, diagnose and
treat ADRD, and provide ongoing longitudinal care for these
patients and their caregivers. I am an investigator on two NIH-
funded clinical trials that are evaluating vascular risk
factors for ADRD, and, finally, as Senator Lee mentioned, I am
involved with the Building Our Largest Dementia, or BOLD,
Public Health Center of Excellence on dementia risk reduction.
Recent advances in strategies to prevent cognitive
impairment and to provide effective dementia management
services that incorporate caregivers lead me to offer the
following recommendations that take aim at ADRD.
First, promote prevention strategies. Promoting cognitive
screening is an important prerequisite to implementing
prevention strategies. Creating a dementia--aware society where
cognitive screening is normalized will help to reduce the
stigma that often accompanies a dementia diagnosis. Requiring
validated, objective, screening tests of memory and cognition
in the Medicare Annual Wellness visit is one strategy to
accomplish this.
Implementing public health strategies that target
modifiable dementia risk factors that are the focus of the CDC
BOLD Infrastructure programs will be critically important.
Vascular aging and hypertension have emerged as key actors in
the ADRD story, particularly with the good news that the
development of cognitive impairment can be prevented with
better control of high blood pressure. Since many of the
modifiable risk factors disproportionately impact underserved
populations who have adverse social determinants of health,
approaches to mitigate the impact of these health disparities
are urgently needed.
Second, develop a dementia-competent work force. Most
dementia care is provided by primary care health professionals.
All members of the health care team will require education and
training to competently evaluate and manage patients with
cognitive impairment. In parallel, there is a need to expand
the number of geriatrics health care professionals, including
geriatricians and cognitive specialists, to meet the demands
for appropriate diagnosis of patients with dementia.
There is a special need to support hands-on caregivers and
the direct care work force in both home and long-term--care
settings to equip them to care for persons with dementia. This
support should include ensuring living wages, benefits, and
paid family leave.
Third, support dementia care management programs and family
caregivers. There is a pressing need to provide options so
persons with dementia can access the right care, in the right
setting, at the right time. Efforts to expand home and
community-based services, as Senator Casey was mentioning in
the introduction, and making these evidence--based programs
such as the Care Ecosystem and the Community Aging in Place
Advancing Better Living for Elders more broadly available will
help decrease excess health care system utilization and avoid
premature placements in skilled nursing facilities. The
recently introduced bipartisan Comprehensive Care for
Alzheimer's Act is designed to support the development and
evaluation of dementia care management programs like these.
Fourth and finally, to continue to invest in ADRD research.
The recent infusion of ADRD research support has already begun
to yield important results, identifying effective strategies to
prevent and manage ADRD, in parallel with efforts to develop
and provide disease modifying treatments for AD, the importance
of implementing existing preventive strategies cannot be
overstated. Just a 2-year delay in dementia onset would
translate to 2.2 million fewer Americans developing dementia by
the year 2040, a 20-percent reduction.
Finally, additional research is needed to identify
mechanisms for cognitive resilience, promoting cultural
awareness, and addressing the disproportionate impact of health
disparities in developing cognitive impairment.
Thank you for giving me this opportunity to share my
perspective this morning and these recommendations with you. I
look forward to addressing your questions and comments.
The Chairman. Dr. Supiano, thanks for your statement.
We will now move to Dr. Manly. You may begin.
STATEMENT OF JENNIFER MANLY, Ph.D., PROFESSOR OF
NEUROPSYCHOLOGY, DEPARTMENT OF NEUROLOGY AND THE
TAUB INSTITUTE FOR RESEARCH ON ALZHEIMER'S
DISEASE AND THE AGING BRAIN, COLUMBIA UNIVERSITY
IRVING MEDICAL CENTER, NEW YORK, NEW YORK
Dr. Manly. Thank you. Chairman Casey, Ranking Member Scott,
and distinguished members of the Committee, thanks for the
opportunity to speak to you today.
Over the last decade we have seen a tremendous increase in
the federal investment for research on Alzheimer's disease, or
AD. Thank you. This investment has accelerated our
understanding of the heterogeneity of AD and has allowed us to
engage a more diverse group of Americans in Alzheimer's
research, but little progress has been made in decreasing
racial and ethnic disparities or equitable care for those
living with AD.
Rates of Alzheimer's are higher among African Americans and
Hispanics than non-Hispanic whites, and this means that at the
same age, a higher proportion of Black and Hispanic older
adults live with AD than among whites. More women are affected
by AD than men because women live longer, and age is the
primary risk factor. Women represent about two--thirds of the
dementia caregivers in the United States. It is now well
established that people who had fewer opportunities to receive
education when they were children are at higher risk for
Alzheimer's disease later in life. There is evidence that early
life residence in a ``Stroke Belt'' state, including states
that Committee members represent, such as Georgia, North
Carolina, and South Carolina, leads to higher risk for AD, even
if you move out of the Stroke Belt.
Overall, Alzheimer's disease is underdiagnosed. Only about
half of the people who have Alzheimer's disease ever receive a
formal diagnosis by a doctor, and these missed diagnoses are
more common among Black and Hispanic older adults than among
whites.
For the past 23 years, I have been an investigator for a
community-based longitudinal study of aging and dementia, where
I partnered with the African American and Caribbean Hispanic
older adults of Washington Heights, Hamilton Heights, Inwood,
and Harlem in northern Manhattan. My work focuses on
understanding why disparities in AD and dementia are maintained
and how to narrow or eliminate them. Our research points to
historical and contemporary policies that have created unequal
access to resources and may increase exposure to stressors
throughout life. These conditions get ``under the skin'' early
in life and account for disparities in AD as people get older.
For example, before Brown v. Board of Education and
continuing today, racist policies and residential segregation
forced Black children to attend underfunded schools that had
large student/teacher ratios, lower teacher salaries, and
discriminatory disciplinary policies. Many older Americans who
live in Washington Heights immigrated from the Dominican
Republic, where, especially in the rural areas, there was
little governmental investment in education and fewer
opportunities for children to go to school or to learn to read
or write. My research team found a connection between these
early life school policies and later-life risk or dementia.
People who went to school in counties, States, or countries
that invested more resources in schools are at lower risk for
cognitive impairment and dementia when they get older. Our
research in Washington Heights suggests that investment in
schools that serve Black and Hispanic children would narrow
inequalities in dementia in those groups.
One of the biggest challenges for families in Washington
Heights is that most of the doctors who provide specialized
dementia care do not speak Spanish. Specialists that are
bilingual in Spanish and English have long waiting lists of
people who need an assessment. Using an interpreter for any
medical visit has limitations, but this is even more of a
barrier to quality care when the patient has cognitive
deficits.
Lack of culturally appropriate resources for dementia
diagnoses and care is a key reason why African Americans and
Hispanics with dementia are less likely than whites to have a
formal diagnosis.
Expansion of paid family leave is an equity issue for
dementia care and services, because people from minoritized
backgrounds are more likely to rely on informal and unpaid
family caregiving. This has a disproportionate effect on wealth
and well-being because people from minoritized backgrounds are
less likely to hold a job with paid family leave benefits. Many
women of color must leave the workforce to take care of loved
ones with dementia.
The home health care or direct care work force largely
consists of women of color, many of whom have less than a high
school education and were born outside the U.S. Direct care
workers earn low wages and experience high turnover. It is time
to raise wages and facilitate career advancement opportunities
for direct care workers to be consistent with the essential
role that these paid caregivers play in the well-being of our
society.
Thank you.
The Chairman. Dr. Manly, thank you for your testimony.
Now we will turn to Ms. Lahmeyer.
STATEMENT OF PEG LAHMEYER, EXECUTIVE DIRECTOR
AND CO-FOUNDER, THE ARK OF SOUTH CAROLINA,
SUMMERVILLE, SOUTH CAROLINA
Ms. Lahmeyer. Good morning. Thank you to the Senate Special
Committee on Aging, Chairman Senator Casey, and Ranking Member
Senator Scott. Thank you for this opportunity to testify.
Growing up in rural Alabama with older parents and much
older siblings, I witnessed how our family and extended family
cared for each other and nurtured each other through good times
and tough times. These impactful life experiences shaped my
life.
My family expanded to Summerville, South Carolina, with a
wonderful husband, six children, including stepchildren and an
adopted at-risk teenager.
My mother was diagnosed at age 76 with Alzheimer's.
Multiple visits to Alabama showed the continual decline of both
of my parents. My father, age 80, was my mother's caregiver for
eight years when he called and said that he needed help. We
moved her to a facility in Montgomery, which was 45 miles from
my dad. It was devastating to both of them.
My father died in 1990 at the age of 90. We moved mother to
live with us, and I was granted conservatorship. Working full
time, I resigned to become her full-time caregiver. I worked
part time at night delivering newspapers so I could be home
during the day.
After discussing the plight and the needs for caregivers to
``have a break'' and support, I was asked to start a group
social respite program at our church. In January 1996 the ARK
opened its doors.
Needing skilled care, my mother moved into an Alzheimer's
long-term care in 1995 before the ARK actually opened. She died
in 1997 at the age of 93. Her legacy lives on through the ARK.
I sought every opportunity to speak to anyone--church,
civic, businesses, governmental groups, clubs, and anywhere I
could find an audience. The Alzheimer's Association in
Charleston was just starting, and I became involved in many of
their educational committees, fundraising, and eventually as a
board member.
As a previous business person, I believe in the power of
the Chamber of Commerce. Becoming a member has opened many
doors for support and growth for the ARK. Nonprofits are
essential to the community, and building relationships is
vital.
The ARK provides so much more than respite to five counties
in the low country of South Carolina. They include: four
respite half days a week in Summerville; bus service since
2000; a satellite respite center in Harleyville weekly; four
support groups in Berkeley and Dorchester counties, one for
wives only; and also we have an early memory loss program that
meets weekly.
Our outreach program, the NOAH Project--Neighborhood
Outreach Alzheimer's Help--provides educational classes, memory
screenings, health and resource events; also law enforcement
and first responder training, which is evidence--based and
certified through the South Carolina Criminal Justice Academy;
caregiver workshops and train-the-trainer programs, both in
person and virtual; and include powerful tools for caregivers,
which is a 6-week evidenced-based class, and also the train-
the-trainer program for professionals. These versions also come
in Spanish and Korean.
All of these services are provided by five full-time and
four part-time staff. They are devoted, passionate, fun loving,
supportive, and caring. In 2018, we acquired a home to move our
services from the church and to be able to enable expansion.
Through the shutdown and pandemic, our social program
closed for seven months. The staff immediately started calling
and emailing caregivers, creating fun activity baskets that
were delivered to their homes. Zoom was our salvation for our
educational workshops, memory screenings, and support groups.
Caregivers and families felt less isolated and connected. The
train-the-trainer classes reached as far as Alaska and beyond.
When we returned to full-time programming, we saw the
decline in our ARK families because of the isolation and lack
of socialization. Now we know that our programs are so vital
for their well-being, and now we are seeing the effects of
dementia to include not only the Baby Boomers but also the
Millennials are experiencing caregiving and in some cases early
onset dementia.
Funding for grassroots organizations is paramount.
Additional state funding for aging services is critical
especially for Alzheimer's support programs. Families need to
afford in-home care as well. With the support of South
Carolina's Office on Aging, we have been able to build our
education program. More funding for aging services is needed as
the numbers continue to increase and every day and every
minute.
Senators, caregiving families need your help, and thank you
so much for the help you have given, and, Senators thank you
very much for your time.
The Chairman. Ms. Lahmeyer, thanks so much for your
testimony.
Before I introduce our last witness, I wanted to
acknowledge Senators, as I said, as they appear. Senator
Warnock has been on for a little while, and I missed him
earlier, so I want to acknowledge his presence at the hearing.
Finally, our fourth witness and final witness is
Katelyn Montanez. Katelyn?
STATEMENT OF KATELYN MONTANEZ, FAMILY CAREGIVER, EPHRATA,
PENNSYLVANIA
Ms. Montanez. Chairman Casey, Ranking Member Scott, and
members of this Committee, thank you for the opportunity to
testify before the Committee about my experiences as a
caregiver for my father.
I am a full-time mother, I have a full-time job, and I am a
full-time caregiver. Each of these responsibilities are
important. Taken all together, it can be overwhelming. My hope
is that, in sharing my story, others who are impacted by this
disease that have similar stories will feel less alone. I am a
social worker and an advocate for my father and for the
millions of Americans who have family or loved ones living with
Alzheimer's and other dementia. My father, Luis, was diagnosed
with younger-onset Alzheimer's at age 54. I was only 22 years
old. This year, he turned 61, just one year younger than my
grandmother who passed away of the same disease.
More than six million Americans are living with
Alzheimer's. My father's story represents only one set of
unique challenges which individuals and caregivers live with
every day. I want to underscore the importance of what this
hearing is based around: expanding the support of daily and
long-term-care needs for people with dementia, which includes
the support of caregivers.
My father began showing symptoms of Alzheimer's in his
early 50's, but he was not formally diagnosed until years later
in 2015. After he began displaying symptoms my family was
familiar with, my parents visited a few providers to see if
they could figure out his neurological and other health issues.
It took meeting with several doctors before one of them
recognized the signs of younger-onset Alzheimer's.
Prior to his diagnosis, my mother made it her mission to
attempt to understand how to navigate the resources that could
help my family. My dad was unable to earn a living for his
family and just stayed home, confused and disoriented. He had
been a custodian at a local school, and now we were faced with
a difficult new reality. My mom and I were both working full
time, and we were unable to provide the 24-hour supervision he
needed. The delay in diagnosis and fragmented care he received
left us feeling frustrated, alone, and unable to access much
needed supports and services. It was an incredibly challenging
time for us. At first, when he was assessed for home and
community-based services, he was not eligible because he could
still do many things on his own. He actually was denied twice.
Since he was not able to receive services, my family was
constantly concerned about his safety. There have been numerous
instances when my father was confused, and as a result, ended
up wandering and becoming lost.
Last fall, we were fortunate enough to finally get him
Medicaid home and community-based services through the waiver
program in Pennsylvania. A medical social worker helped us
through the application process and with the numerous
assessments and paperwork that had to be done. It was a game
changer for us, but it should not be that hard for people to
receive the services they need.
My father has been receiving home and community-based
services now for about seven months. I know this Committee's
hearing today is focused on the importance of these services,
and I cannot tell you how thankful I am that we were able to
have access to them. We recently had to move my dad to my
sister's house because my mom was no longer able to care for
him. The services he is receiving give him an aide for about
three hours a day and Meals on Wheels. When he was living with
my mom, the aides would help clean the house, help my dad with
breakfast, and even take him on short rides. Now that he is
living with my sister, the aides take him on walks and
sometimes even bring her dogs along. The aides also come in the
evening to give my sister a chance to run errands and just have
a break. We have also run into some issues as well. Right now
my sister has not been able to find an aide for my dad because
of the high burnout and turnover rates.
With someone living with Alzheimer's or dementia,
consistency of care, including who is providing the care, is
essential. Being an aide is hard work with little pay. Aides
should be paid more for the work they do and have better access
to dementia education and training for their workers. If aides
received proper training to work with individuals living with
Alzheimer's and dementia, they would have the tools they need
to help redirect, would understand common behavioral issues,
and it could lead to more successful interactions. People
living with Alzheimer's have good days and they also have bad
days, but better trained aides who get paid higher wages would
bring consistency for my dad and a better quality of life for
him and my family.
Congress has continued to keep Alzheimer's and dementia top
of mind when working on important issues like home and
community-based services. Chairman Casey, I am grateful for
your leadership on this important and deeply personal issue. I
am a passionate advocate for my dad and for those living with
Alzheimer's and other dementia. It is important to me that
people living with Alzheimer's, including those who are younger
than 60, are able to receive the care and support they need.
I will continue to be the voice for people who have lost
theirs. Congress must ensure all communities have access to
high-quality, culturally appropriate services and supports.
Additionally, I respectfully ask you to increase access to home
and community-based services for individuals living with
Alzheimer's and dementia, including individuals living with
younger-onset Alzheimer's. Please continue to make Alzheimer's
research a priority and to work together to pass critical
legislation like the Comprehensive Care for Alzheimer's Act and
the Equity in Neuroscience and Alzheimer's Clinical Trials Act.
These are the bipartisan priorities I am advocating for, along
with the over 2,000 other advocates that are participating in
the Alzheimer's Association and Alzheimer's Impact Movement
Advocacy Forum this week. These policies will help other
families like mine receive the support and services we all need
and deserve to lead to improved research outcomes.
Thank you for inviting me to speak, for listening to my
story, and for all that you have done. I look forward to
answering any questions.
The Chairman. Well, Katelyn, thanks very much for your
statement, and we will now move to questions. I will start, and
then we will go to Ranking Member Scott.
I wanted to start, I guess, with a question both for Ms.
Lahmeyer as well as Katelyn regarding the challenge of this
kind of caregiving. As your testimony indicates and as so many
people as part of this hearing understand, this is hard work. I
have never done it myself, but I can get some sense of it
listening to your testimony. It is also deeply personal, in
many cases individuals taking care of a close family member, a
parent or someone very close to them.
We know that long-term-care services can ease the burden on
the caregiver. We also know that most people want to receive
those kinds of services, and they need those services and
supports in their homes for as long as they possibly can. It is
hard, hard work.
I wanted to ask both of you, and we will start with Ms.
Lahmeyer, do you believe that families need more support at
home? I know that is kind of a broad question, but can you
speak to that?
I think you are muted.
Ms. Lahmeyer. I thought I had----
The Chairman. There you go.
Ms. Lahmeyer. I apologize. Definitely. Listening to
Katelyn's story and seeing how their family has worked together
to make that happen, but also, you know, the caregiver's
burnout is just unbelievable if they do not have help. You
know, the Committee did long-term-care services, the Area
Agencies on Aging have the ability to provide vouchers for in-
home services, but they are very limited. They can also provide
vouchers for caregivers to be able to access respite programs
like the ARK. Again, they are very limited ways--vouchers, I
should say, limited vouchers available to the families, so they
may only get a voucher for 12 visits. Well, that is only once a
month, and the caregiver needs more than that in respite.
Also, looking at our Medicaid system, the higher
reimbursement for providing care in the home to help these
families, if they do have to make that long-term-care decision.
I know when my mother was admitted to the Life Care Center,
they did have an Alzheimer's unit. At that time they were
accepting Medicaid. Since the numbers are growing with
Alzheimer's and such, and more people are aging, they finally
pulled their Medicaid reimbursement contracts and [inaudible].
I was fortunate to get in under that wire, but there are so
many facilities that are needed to be able to accept Medicaid
for the care of Alzheimer's patients, and I would encourage a
look at that possible scenario to determine more help for
families that have to make that long-term-care decision, ways
to be able to have them in a quality facility that understands
ADRD. Thank you.
The Chairman. Thank you so much.
Katelyn?
Ms. Montanez. I agree as well. I believe we do need more
resources within the home and services. I think the challenges
and the different uncertainties that my family and I
experienced were very troublesome and very difficult to work
through. Like I stated in my testimony, the countless
paperwork, the countless calls just to get my father services,
especially since he is so young with Alzheimer's, was just very
difficult. My hope is to see changes especially for the younger
people who are diagnosed with Alzheimer's, to be able to have
that prevention implemented immediately once the diagnosis--
once the person is diagnosed. I think it will help family
members just ease the burden, just to have that extra support.
Like I said in my testimony, those three hours a day for my
sister have been a blessing. Could we, you know, use more and
need more? Of course. I guess we have to start somewhere, and,
yes, thank you.
The Chairman. Thank you so much.
Ranking Member Scott?
Senator Tim Scott. Thank you, Mr. Chairman. I think it
would be appropriate for me to perhaps yield my time to former
Chairwoman Collins who is actually the founder of the Senate
Alzheimer's Task Force. Senator Collins, if you would be
willing to take the first question since you have earned the
right to do so, I would really appreciate hearing from you
first.
Senator Collins. Senator Scott, thank you so much for your
typical graciousness. In just a few minutes, the HELP
Subcommittee, of which I am the Ranking Member, is holding a
hearing on health care worker shortages, so it is very relevant
to a lot of the issues that we are talking about.
I am the founder and co-Chair of the Senate Alzheimer's
Task Force, and for many, many years, I chaired this annual
hearing, and it feels so strange to not be chairing it now. I
know that with Senator Scott and Senator Casey, the Committee
is in great hands. Thank you for your graciousness.
Alzheimer's is our most costly disease, and it also exacts
such a tremendous human toll, not just on the victims but on
the entire family. Katelyn, I was really moved by your
testimony and what you are doing to take care of your dad while
you take care of your children, you are working, and how
difficult that is.
In my own family, Alzheimer's has claimed my father, two of
my uncles, my grandfather, cousins. It is unfortunately very
widespread, and I watched my mother heroically take care of my
father at home for eight years before he went into the
veterans' home. It was just so difficult, even with a little
help from family members. It was really hard to access care.
There is an issue that Katelyn raised that I want to ask
Dr. Supiano about. She mentioned the delayed diagnosis for her
father, and according to a survey by the Alzheimer's
Association, 22 percent of primary care doctors said that they
had no residency training in dementia diagnosis and care, and
of those who did undergo training, 65 percent said that it was
very little.
Legislation that I offered to reauthorize the Geriatrics
Workforce Enhancement Program and reinstate the Geriatrics
Academic Career Award Program was signed into law as part of
the CARES Act. Doctor, I would like to hear from you your
thoughts on how medical education programs can be improved to
better prepare our health care work force to serve Alzheimer's
patients.
Dr. Supiano. Well, Senator Collins, first, thank you for
your leadership on this very important matter and supporting
the work that the Senate has done related to Alzheimer's
disease and also with the Health Care Act and particularly with
your support of the Geriatric Workforce Enhancement Program and
the Geriatric Academic Career Award Program. Full disclosure, I
am funded through the Utah Geriatric Education Center, and I am
presenting to our group, who is holding their retreat later
today, so we thank you very much for that ongoing support.
To respond to your question specifically about how we can
further address the education deficit in dementia care and, for
that matter, to extent it further to really geriatric care, I
have been invested in medical education throughout the 30 years
of my career in academic geriatrics, and we continue to pursue
efforts in really two prongs: first, to certainly promote the
growth and development of more geriatric health care
professionals. That is what the GWEP and the GACA programs are
designed to do, and expansion of those programs would certainly
address that component.
The second prong is to increase geriatrics and dementia
education for all trainees across all health professions, and
to that end, aligning the funding for graduate medical
education, which, as you know, comes from Medicare, comes from
CMS. Aligning the education dollars that support graduate
medical education with competencies in geriatrics and dementia
care would be a really important step in that direction.
There are specific targets that we would love to see to
enhance the training for all health care professionals.
The final point I would make is educating all primary care
providers who are currently in practice as well as society, as
I mentioned in my opening statement, creating a dementia-aware
society and normalizing cognitive screening for everyone, and
to that end requiring an objective assessment of cognitive
function as part of the Medicare annual wellness visit would be
another approach to address the need that you have so
appropriately identified.
Senator Collins. Thank you very much, Doctor, and thank
you, Mr. Chairman, and thank you, Senator Scott, for allowing
me to go early so that I can race off to my other hearing. This
is such an important issue and near and dear to my heart, and,
Ms. Montanez, I know that you too are a caregiver, and my heart
goes out to you as you try to balance everything also. I want
to thank all four of the excellent witnesses that are here
today, and please be assured that I am going to continue to
work hard until one day we have a means of prevention,
effective treatments, and ultimately a cure for this
devastating disease. It is just so important.
Thank you all. Thanks so much.
The Chairman. Senator Collins, thanks very much, and we
well remember those hearing rooms packed with people for this
hearing every year. This year it is virtual, of course, but we
know a lot of people are connecting.
Just to give you a sense of order, we will go to Senator
Gillibrand next, and then I will turn to Ranking Member Scott.
Senator Gillibrand, welcome.
Senator Gillibrand. Thank you, Mr. Chairman, and I am sorry
to not have been present for my introduction. I was unaware of
the timing, so I apologize. I want to thank everyone for the
countless hours, dedication, and work that we have done to lift
up the voices of our Alzheimer's community. I also want to
thank the caregivers for their countless hours, dedication, and
mental and physical toll that they have given, because as
caregivers they give so much.
According to the Alzheimer's Association, nearly 83 percent
of the help provided to older adults in the United States comes
from family members, friends, and unpaid caregivers. While
caring for a loved one with Alzheimer's is rewarding in its own
right, it can also be stressful, bringing physical and mental
challenges and health challenges for caregivers who are often
overlooked, and they are not addressed.
Ms. Montanez, thank you for sharing your story. As a
caregiver, what has been your biggest challenge in addressing
and facilitating care for your loved one? Are there support
services or resources that you wish you had known about or had
access to earlier in the process?
Ms. Montanez. Thank you for your question. I would say the
most challenging experience that we walk through would be just
not having access to services immediately. Like I said in my
testimony, my dad was very, very young. I can just remember the
countless calls that I made to Office of Aging and being told,
``Call back when he turns 60. When he turns 60, he would be
guaranteed services.'' Unfortunately, we could not wait until
he was 60 years old. When my mom went into the hospital, that
is when he got services because he was considered abandoned, an
abandoned person.
I would just wish that he received services, whether it was
like Meals on Wheels or even an aide years ago, just to have
interactions and have those social interactions that he
desperately needed, because within those first few years, he
was just home alone a lot of the time, and myself, I was in
graduate school, and then my mom was working full time.
Senator Gillibrand. Thank you.
Dr. Manly, welcome. I am so glad you were able to be one of
our expert witnesses today. What resources do you think are
needed most to ensure caregivers of people with Alzheimer's are
in the best position to provide support and care for their
loved ones while also ensuring their own well-being?
Dr. Manly. Thank you for that question, Senator Gillibrand.
I think that our research actually suggests that investment in
neighborhoods, in housing, and in health care in racial and
ethnic communities that are underserved and advancing racial
equity in institutions which have a positive impact on some of
the issues that you raised, essentially we need to focus on the
neighborhood or local level, increasing options for families
that are seeking dementia services in places that they live.
This means potentially getting the best minds together to
innovate and broaden dementia care options in neighborhoods
where there is a higher impact of dementia, and also
incentivizing dementia specialists to practice in these
communities. This will help us narrow dementia care
inequalities.
We found in our research that telehealth was the way for us
to get a hold of people in these communities, and this would
also help people get the care in the home where they need it.
Underserved communities need the devices and they need the
connectivity that is required for this tool to work. This is
because early and accurate diagnosis of dementia is at the core
of provision of dementia services, but in underserved
communities, there are fewer resources to refer patients to
dementia care professionals.
I think we talked about earlier investment in training
programs that graduate qualified, culturally competent
behavioral health professionals with specialty training in
dementia would have helped to narrow some of these gaps. Thank
you.
Senator Gillibrand. Thank you so much, Dr. Manly, and thank
you so much, Mr. Chairman, for this excellent hearing.
The Chairman. Thank you, Senator Gillibrand.
I will turn now to Ranking Member Scott.
Senator Tim Scott. Thank you, Mr. Chairman, for this
hearing, again, because I will tell you I am learning a lot
from the witnesses.
Ms. Lahmeyer, thank you for your 25 years of work and
dedication and, frankly, your passion that is seen through the
ARK. A couple questions for you. Some of the comments that you
have made that I find very interesting is the importance of
nonprofits like yours working with other organizations within
the community. I found it heartening to see that you were
really helping to educate law enforcement and train law
enforcement because I know so often the calls that go out when
someone is lost or missing is going to be responded to by a law
enforcement officer. Making sure that our first responders have
that really important training so that the person who is being
approached gets a little more sensitivity, gets a different
approach because it is really not a law enforcement matter, but
someone has to have that sense of responsibility and urgency to
go find that person.
Tell me how you worked to build those community ties that
led to the type of cooperation that you are seeing in our low
country community in South Carolina.
Ms. Lahmeyer. Thank you, Senator Scott, for that question.
Part of our NOAH Project is that outreach help, and we have
worked with about 20 different communities across the state
within the last 15 years or so to build programs within--
support programs within the communities, whether it be a
support group or a respite center or just training and inviting
us back and back and back to do more education in the
community. We feel education is really the key to being able to
access caregivers and educate them about what there are about
resources and services that we can bring into the communities
that they are not even aware of. The way we do that is we
normally will go to talk to the community leaders, the mayor,
the bank president, you know, the ladies' guild at the churches
or whoever we can get together and sit down at a table with
them, and oftentimes we have been requested to come to a
community to do that. I know the mayor of St. George had done
that many years ago, and so we sat down at the table with all
the bank leaders and civic clubs and business leaders and
said--you know, we do not go in with a cookie-cutter approach.
We go in and we sit down at the table and say, ``What do you
feel like your families that are living with dementia, what are
the needs as caregivers''--regardless of whether it is dementia
or not. ``What do you feel that your community needs?'' Then
sometimes they do say, ``Well, we would like to have a support
group.'' Oftentimes that is how it all begins, is to--excuse
me?
Senator Tim Scott. I said, ``Yes, ma'am.''
Ms. Lahmeyer. Then that grows into a respite program where
they can come to a day program, socialize, and the caregiver
can get a break. Then we have the health fairs with all types
of trainings, improving memory loss, memory screenings, and so
we will work with that community as long as they need us, and
go forward with that. That is the key, is finding those people
in that community that make things happen, and then we go from
there.
Senator Tim Scott. Thank you very much.
Dr. Supiano, let me hop to you in my last minute or so.
One of the things you talked about is the importance of the
co-morbidities, the fact that I live in what they call the
``Stroke Belt,'' and the second leading cause of death in South
Carolina is heart disease. I will say this: You have brought or
at least illuminated the importance of the issue of these co-
morbidities that really work against the patient who then
develops Alzheimer's.
In your research, hypertension and Alzheimer's, how can we
help inform, educate patients to seek the diagnosis and/or get
more information about the Alzheimer's component, whereas the
hypertension, you might be driven to the doctor, but
Alzheimer's sometimes we just ignore some of the symptoms? It
seems to me that that is a really important intersection for
patients, especially in communities like South Carolina and the
minority communities that have a higher incidence of
hypertension or diabetes, too.
Dr. Supiano. Senator Scott, you are exactly right. We have
a lot of work to do, frankly, to improve those risk factors
across the country, but particularly in parts of the country
that are affected by these health disparities and have very
high cardiovascular risk factors, as you point out, of high
blood pressure and diabetes.
I think part of that messaging for us is that we now have
evidence that what is good for the heart is good for the brain.
If we can get the message across that addressing your blood
pressure level or your diabetes or your level of cholesterol
can be important to protect your brain health down the road,
not only prevent the heart attack or stroke, I think that is
part of the messaging that we need to communicate to the health
care system as well as to society to help really address the
epidemic of those risk factors, the epidemic of obesity for
similar reasons. What is good for the heart is good for the
brain.
Senator Tim Scott. Chairman Casey, I know I am over time,
so let me just say this very quickly. I do think that I would
love to have another hearing on the marketing, the strategies
necessary to make sure that our communities have more
information about the important information being shared with
the panelists. Thank you so much.
The Chairman. Ranking Member Scott, thank you very much.
Now we will turn next to Senator Warren.
Senator Warren. Thank you, Mr. Chairman. Thank you for all
the work that this Committee has done over the years to bring
attention to Alzheimer's.
I also want to say thank you to the families who are
impacted by this devastating disease who have come to be with
us today to advocate for progress. You know, here in Congress
it is our responsibility to do everything we can to find a
cure. In 30 years, experts estimate that spending on
Alzheimer's will increase to more than $1 trillion to pay for
doctor's visits, medications, emergency departments, hospital
admissions, skilled nursing facility care. Even today,
Americans spend an estimated $305 billion a year caring for
people with Alzheimer's, but the National Institute of Health
spends just one percent of that amount on Alzheimer's research.
Providing continued enhanced funding is a critical weapon in
our fight against this disease.
Let me start with you. Dr. Supiano, we spend far too little
on Alzheimer's research, but I would like to understand more
about the impact that even that small amount of funding has
had. What scientific advances and improvements have been made
as a result of the federal research dollars that we have spent?
Dr. Supiano. Yes, thank you, Senator Warren, for that
question, and thank you for your advocacy for enhancing
Alzheimer's disease research and research in biomedical science
in general. Your point is well taken, but the investment that
has been made, as I said in my testimony, the infusion of
support over the last several years has resulted in dramatic
advances. We now are aware that there are effective strategies
to prevent the development of cognitive impairment. We also
know--and related to the focus today on caregiving--that there
are effective dementia care management programs that
incorporate caregivers that have been shown to decrease health
care utilization and prevent early nursing home placements. If
these investments are important, you are also aware--and I know
last year this Committee heard testimony from Dr. Richard
Hodes, the Director of the National Institute on Aging, and the
investment that has been made in the basic biology of
Alzheimer's disease and the genetics of Alzheimer's disease is
also bearing fruit. We are on the cusp, hopefully, of being
able to offer the first disease-modifying drug for Alzheimer's
disease. We have a lot more work to do, but thanks to the
infusion of support that has been made to date, these advances
are now available, and they are ready to be implemented. I
think now is our chance to provide the support to now implement
these particular strategies now that we know that they are
effective.
Senator Warren. Well, that is powerfully important. Federal
funding helps drive innovation, and it helps move us that much
closer to a cure.
In the last 10 years, the Federal Government has increased
funding for Alzheimer's and dementia research, but it is still
not enough. Meanwhile, the coronavirus pandemic upended
biomedical research across the country, which has led to delays
in critical studies.
Dr. Supiano, has the coronavirus pandemic impacted the work
of scientists and researchers who are studying Alzheimer's?
Dr. Supiano. Yes, thank you, Senator Warren, and to a
certain extent, the scientific community is not immune from the
effects of the pandemic and the way that it has altered the way
that we go about our business, in this case biomedical
investigation, yes, and some delays are apparent in clinical
trials for Alzheimer's disease, and the impact of the pandemic
on recruitment into those trials and being able to conduct
those trials safely has certainly had a delay. To that end,
getting even more support now to make up for that lost time and
accelerate advances going forward will be even more important
as we now emerge from the pandemic, thankfully. As you pointed
out, medical scientists are innovators, and we have learned a
lot through the pandemic. To be able to conduct pragmatic
trials that can be done remotely, applying virtual telehealth
technologies to medical research is another opportunity and
another advancement that has been made. There are some benefits
from what we have been living with in the last year that, while
there have been delays, we have still been able to make
progress in this fight against Alzheimer's disease and related
dementias.
Senator Warren. Well, I know that biomedical researchers
have made valiant efforts to innovate and to keep these studies
going during the pandemic. This just underscores the need for
more federal support. That is why I will soon be introducing
the National Biomedical Research Act, a bill that would invest
$100 billion over 10 years in research at NIH and FDA. This is
the funding that could be used to fund breakthrough treatments
for Alzheimer's or to find ways to slow the progression of the
disease.
I appreciate the work that you have been doing. I know that
no amount of research funding can make up for the heartbreak of
losing a loved one to Alzheimer's. Research funding can help
prevent the heartbreak for many other families down the line. I
am very hopeful that my colleagues in the Senate will join me
in supporting the National Biomedical Research Act. Let us get
this one done.
Thank you, Mr. Chairman.
The Chairman. Thank you, Senator Warren.
We will turn next to Senator Braun.
Senator Braun. Thank you, Mr. Chairman.
I have two questions, both for Dr. Supiano. I had a bill
out there called the ``Promising Pathways Act,'' and it is for
diseases just like Alzheimer's, ALS, and we spent so much money
over the years, I think sevenfold over recent times, on
Alzheimer's. It has had one of the highest failure rates of any
ailment and attempts to try to get something to work. I think
you talked about earlier there is a lot of stuff in the
pipeline that looks promising.
Does it make sense on ALS, Alzheimer's, that we try to pick
up the pace for the folks that are in the clinical trials,
especially where there are signs of promise that you are making
some headway, and do it a little differently than what you
would do on something that has effective therapies out there,
looking for new or refining? Do you think that would make sense
with Alzheimer's specifically to try to have a different
paradigm for getting some of these promising therapies to the
marketplace to help folks that have no other options?
Dr. Supiano. Yes, thank you, Senator Braun. I agree with
you that given the devastating effects of Alzheimer's disease
in particular, anything we can do to speed the development and
implementation of the disease-modifying therapies will pay
dividends. In addition to that, as you pointed out, I believe
that the timing is right, given the investment that has been
made in the last several years in these basic understandings of
Alzheimer's disease and, as you point out, ALS, investigators
here, my colleague in the Department of Neurology, the Chair of
the department, Dr. Stefan Pulst, has just recently identified
a very promising therapy for ALS that you may be familiar with.
Yes, based on these medical advances, I think the time is
now right to be able to move this forward.
Senator Braun. Would you and others in the field be willing
to have a discussion with the FDA who would have to be behind
that idea? In my attempts to do so, you generally get interest
in it, and then it goes back to the paradigm of, you know, that
normal format and sequence. I am OK with that other than in
places where you have no other options. Is that something you
would be willing to engage with them on?
Dr. Supiano. Yes, Senator Braun, and many of us in the
geriatric research community have been closely working with the
FDA, not only in this area but in others, and the regulatory
aspects of therapies like this as it relates to older
individuals are really important. It is all the more important
to make sure that older adults are included in the trials that
are being done so that we can generalize the results. This
communication with the FDA is important, and, yes, we would
want to partner with you to advance that area.
Senator Braun. Very good. My second question would be on
any disease, rather than treating it, ideally we would love to
prevent it. I know that there are kind of related discussions
on cardiovascular issues, even depression, on the mental health
side of things. Do you think eventually we are going to find a
way to prevent it? Or do you think resources should be put into
therapies to treat it? Obviously, I think we probably want to
do both. I would love your opinion on what you think might be
the best placement of our resources currently when it has been
so elusive on either one of them.
Dr. Supiano. You are correct, Senator Braun, we need both.
The disease-modifying therapy advances, as we just discussed,
are critical. I will point out, though, that we do now have
evidence bases that much of Alzheimer's disease and related
dementias can be effectively prevented. The old initiative that
I mentioned, the public health initiative on dementia risk
reduction, is reviewing what have been identified as 12
potentially modifiable risk factors. Most of these are
lifestyle effects. We have already talked about some of them:
obesity, high blood pressure, diabetes, poor nutrition, limited
education, and down the list. We know that those are effective
strategies. The Lancet Commission in their report from last
year suggested that attending to those 12 modifiable risk
factors would prevent 30 percent of Alzheimer's disease and
related dementias.
My point would be that we know what these strategies are.
We need to better implement them. We need to make sure that
they are being addressed across health disparities, as I
responded to Senator Scott's question earlier, the need to
address the cardiovascular risk factors in areas of the country
where these are extremely high. We do know what is effective.
We just need to invest in public health measures now that will
help us do better to modify those risk factors. Prevention, I
think, is--an ounce of prevention is a pound of cure, I gather.
Senator Braun. Yes. Very good. Thank you so much.
Dr. Supiano. My pleasure.
The Chairman. Thank you, Senator Braun.
We will turn next to Senator Lee.
Senator Lee. Thanks so much, Mr. Chairman.
You know, most of us have a loved one or we at least know
someone whose loved one has experienced the difficulties of
Alzheimer's. In Utah, there are more than 300,000 people age 65
and older and as many as one in ten of them have Alzheimer's
disease, a higher rate than most other states. The number of
Utahns with Alzheimer's who are 65 and older is expected to
increase by as much as 40 percent over the next five years.
Thankfully, Utah is taking proactive steps to address
Alzheimer's disease and related dementias.
Dr. Supiano, can you tell me about some of the ways in
which Utah is leading the country in Alzheimer's research and
tell us a little bit about how Utah's State Plan for
Alzheimer's Disease and Related Dementias is contributing to
this effort?
Dr. Supiano. Yes, thank you, Senator Lee. As you pointed
out, Utah does have a very high rate of Alzheimer's disease in
our state. It is a byproduct of the good longevity that we
have, so the strongest risk factor for Alzheimer's disease and
related dementias is advancing age. With the great life
expectancy in our state, we can expect to have more cases of
Alzheimer's as time goes on, all the more reason to focus on
these preventative strategies, as I was discussing.
You are correct that we are very fortunate that our state
legislature has supported the implementation of the Utah State
Plan for Alzheimer's Disease and Related Dementias. There is
now, I believe, $1 million as a line item coming every year to
the Department of Health to implement this strategy. It calls,
for example, for enhancing screening for cognitive impairment
across the state, so a dementia-aware state. It calls for some
of the workforce need that we have been discussing this
morning. It calls for further investment in Alzheimer's
research, and it also calls for supporting community
organizations. As we heard from Ms. Lahmeyer in South Carolina,
working hand in hand with community organizations and AAAs is
another part of the state plan.
With that, and also with the support that we have through
the Utah Governor's Commission on Aging, we are really poised
to advance these programs that address Alzheimer's disease and
related dementias across the state. The final aspect of this
that I am really excited about and relevant to today's hearing
is the focus on caregiving. As part of the Center on Aging that
I direct at the University of Utah, we have made an investment,
and thanks to funding from the National Institute on Aging to
our College of Nursing and to Dr. Lee Ellington, we have
support for a caregiving coalition that will focus on
supporting the research and implementation we need to help
better support family caregivers, particularly those with
dementia.
We are really well poised in Utah, Senator Lee, with the
support that we have from the state legislature, the Department
of Health, and with the research support from the University of
Utah and the support that we have from NIH, we are poised to
make these advances.
Senator Lee. Thank you so much, Dr. Supiano.
Ms. Lahmeyer, in your testimony you speak about the
personal experiences and sacrifices you made in caring for both
your mother and your father and how that led you to found ARK
of South Carolina. My own mother-in-law, Carole Burr, passed
away just about a year ago after a long and heroic battle with
Alzheimer's disease, so I know firsthand some of the
difficulties this disease brings both to the patient and to the
loved ones of a patient.
The services that you and your colleagues provide really
exemplify the value of everyday individuals stepping up to
serve those in need. As you put it in your testimony, the
nonprofits are essential to the community, and I could not
agree more.
Ms. Lahmeyer, given your experience at the ARK of South
Carolina, what can individuals across the country do to better
serve and provide relief to those in their communities who are
struggling with Alzheimer's dementia or the possibility of
being a better caregiver?
Ms. Lahmeyer. Thank you, Senator Lee, for that question. As
you say, nonprofits are essential because we can provide some
of the services much more economical and affordable for
families because we are nonprofit; we rely on donations and
grants and state funding coming down from the Area Agency on
Aging and South Carolina Aging. I would just encourage families
to reach out, as I did, to church or reach out to an
organization and ask if they can help build a program similar
to the ARK. For 25-plus years, I have spoken to a lot of states
and communities across the Nation at different conferences and
things that I have been to and attended as a presenter, and
there is a network of respite care centers across the Nation
funded through Brookdale National Group Respite Foundation, and
I would encourage communities to reach out to that organization
and find out about starting a respite center or other type of
caregiver services, you know, getting together with support
groups and things like that, and then just building from there,
because there is going to be someone in that community that
will be a leader and will step up to the plate. The support
needs to be there to help you do that, and I have found that
the Chamber of Commerce and some of our other health care
partners that provide care and support to families are more
than willing to join us.
I hope that answers your question. Thank you.
Senator Lee. Thank you very much. Thank you, Mr. Chairman.
I see my time has expired.
The Chairman. Senator Lee, thank you very much.
We will now turn to Senator Rick Scott.
Senator Rick Scott. Thank you, Chairman.
First off, I want to thank everybody for being here today,
and I want to thank the Chairman for putting this important
hearing together to discuss a pretty big issue from my home
State of Florida. As you all know, Florida has a significant
aging population, and so many of our residents and families
have been affected by this heartbreaking, life--altering
disease.
During my time as Governor--I finished in the end of 2018,
and I was Governor from 2011 to 2018--we were able to invest
record funding in the Alzheimer's Disease Initiative. In my
last year, actually, we did $26 million just in state funding
for education and support services for patients and their
caregivers. We established the Ed and Ethel Moore Alzheimer's
Disease Research Program which supports research for better
prevention, diagnosis, treatments, and cures for Alzheimer's
disease, and provides grant support of researchers, which is
important. Our state is also the proud home of the Byrd
Alzheimer's Center and Research Institute, which is the world's
largest free-standing research institution dedicated to
Alzheimer's. They are actually launching a new podcast series
this week to provide information for caregivers.
We also have the Florida Alzheimer's Disease Research
Center, which coordinates efforts from several universities. We
tried to do that with a variety of things, including cancer and
Alzheimer's, to get our universities that are doing research
and hospitals to coordinate their research. Right now this
group is doing a long-term study with hundreds of members of
our Hispanic population, many of them that Spanish is their
primary language, to see how we can better address the issues
for the minority population. We have been able to do a lot, but
as we all know, there is a lot left to do.
Dr. Manly, I understand that Medicare has a yearly wellness
visit benefit, which includes a cognitive impairment
assessment. Do you think that is sufficient? Do you think it is
doing a good job of catching signs of Alzheimer's? Or does it
need to be modified?
Dr. Manly. Thank you for that question, Senator, and I am
very familiar with the researchers and research facilities that
you mentioned that are doing very good work in the state of
Florida. I think that the annual wellness exam is one important
step to incentivizing primary care physicians to do cognitive
screening. I think that one major challenge that we have is
that this kind of work, early diagnosis and screening for
cognitive impairment, takes time. It takes time and it takes
training.
Some of the instruments that we have available take time to
administer, and I think one limitation that we have faced is
that the health care professionals that are administering this
annual wellness exam, many of them do not speak the languages
of the patients. In your State of Florida, in my State of New
York, there is a greater burden with cognitive impairment among
people who are Hispanic. This is because of--when Dr. Supiano
mentioned the 12 modifiable risk factors that drive risk for
Alzheimer's disease, these risk factors are socially
determined. They have their roots in life course inequalities,
and that is why minoritized populations bear a greater burden
of Alzheimer's disease.
As I mentioned earlier in my testimony, we have got to, I
think incentivize training programs that are based in
communities where people speak the language of the folks who
are disproportionately burdened this disease in order to--and
incentivize them to practice in the neighborhoods where these
patients live. That means that the annual wellness exam gives
us this structure for assessing and screening, but we need the
cultural competency of the practitioners, and we need to do a
better job of having our health care system earn the trust of
the communities that they serve. Thank you.
Senator Rick Scott. Thank you. To anybody who would like to
answer this, elder abuse is a serious problem for seniors, from
physical abuse to financial abuse, and both of those things
clearly happen in each of our states. What do you all recommend
is a better way to protect our seniors with Alzheimer's who may
not even remember the abusive actions or who it was, from
strangers, family, and caregivers?
Dr. Supiano. Well, Senator Scott, this is Mark Supiano. I
am happy to jump into that. You have raised a very important
concern for protecting all older adults, but particularly those
who have cognitive impairment, from both physical and financial
abuse.
From the financial fraud perspective, one of the key
education components for patients and their families who are
presenting with cognitive impairment is to be proactive about
identifying financial protections for that patient to put
firewalls around their financial assets so that they are
protected from people that might take advantage of their
limited cognitive abilities. Being proactive as part of a
dementia care team, professionals who can--it would often
include a social worker that can help patients and their
families set up those appropriate protections for their
financial assets, would be a huge step in the right direction
for preventing the financial abuse.
Senator Rick Scott. Thank you. Chairman, thanks again for
holding this hearing.
Ms. Lahmeyer. Senator Scott, may I add something to that?
Senator Rick Scott. Absolutely.
The Chairman. Sure.
Ms. Lahmeyer. I am sorry. We are over. I see that.
I find that courts here in South Carolina are wonderful
with counseling with families and helping families get at
conservatorship or guardianship in case there is a family
member trying to take advantage of a care receiver. I always
recommend elder law attorneys and especially our probate court
is phenomenal with helping families protect the individual.
Senator Rick Scott. Thank you.
Thank you, Mr. Chairman.
The Chairman. Senator Scott, thanks very much.
I just want to let everyone know where we are and what we
will do now. I will turn to a second round of questions that I
have and Ranking Member Scott may have. We may go back to the
first round for a Senator who is likely to return, but let me
go back to Dr. Manly. I was noting in the materials for your
testimony some of your background, just remarkable scholarship:
185 peer-reviewed articles that have contributed insights into
the disparities in dementia across racial and ethnic groups.
Like a lot of folks on this panel, you have spent a lot of time
on these issues.
I wanted to cite for you, Dr. Manly, a report by the
National Academy of Sciences, Engineering, and Medicine this
past February, which said, ``To live well with dementia, people
need care, services, and supports that reflect their values and
preferences, that build on their strengths and abilities,
promote well-being, and address needs that evolve as cognitive
impairment deepens.'' said the National Academy of Sciences,
Engineering, and Medicine.
Our discussion this morning clearly shows we have a ways to
go to achieve this goal. Closing the disparities gap in
Alzheimer's disease for African American and Hispanic adults
must, of course, be part of this discussion.
Dr. Manly, here is the question: Can you say a few words
about what more needs to be done to ensure that all people with
dementia and their caregivers can live well for as long as
possible and that no one group is left behind? Where do we go
from here? I know in your testimony--I guess it is on page
seven--you offer a series of recommendations, but just on this
part of your testimony and, of course, your scholarship, what
would you recommend?
Dr. Manly. Thank you, Senator Casey. I think the first
thing I would recommend is something that we have been talking
about throughout the morning, which is the investment in
research in Alzheimer's disease and related dementias. I think
that we have noted some of the ways that that investment has
really transformed the research space for Alzheimer's disease,
and one way that it has done that is by leveraging studies that
were already existing that had been very successful in reaching
some of the populations that experienced disparities in
Alzheimer's disease, but that these studies had done that for
other diseases like hypertension, like diabetes. These studies
are now being--I think ``converted'' is a little strong of a
word, but being utilized to study Alzheimer's disease.
In order to do that, the Alzheimer's researchers have had
to be very innovative, to innovate screening measures,
cognitive screening measures that can be incorporated into
those studies. A lot of those measures need to be done over the
phone because these studies are national studies. A lot of
these studies need to employ people all over the country to go
out and take blood and do in-person assessments for those
participants.
I think that we are seeing a tremendous amount of
innovation that gets to people where they live, and that is
really the key part of the other recommendation that I have
about improving care for minoritized populations and making
sure that these populations are not left behind, as you
mentioned, which is that the neighborhood level is where we
need to focus, the local level.
I think that what we are finding is that families need
options. Dementia is a long course, and those options change as
the disease changes. What this means is incentivizing different
stages of care and services in the neighborhood so that they
are available where people live, and we know that some
neighborhoods have high proportions of Black and Hispanic
people who are living with Alzheimer's disease. We know that
from the studies I mentioned before, so those are my
recommendations, Senator.
The Chairman. Doctor, thanks very much.
I will turn to Ranking Member Scott.
Senator Tim Scott. Thank you, Chairman, and thank you all
once for being here.
Let me just say to both of our staffs, who spent a lot of
time putting this hearing together, I am impressed by the
quality and the caliber of our witnesses. I am impressed by the
way that this naturally flows. I want to say thank you to my
Aging Committee staff as well as yours who have just spent a
lot of time and energy on an important topic. This could be the
most expensive disease our Nation ever sees, and so spending
quality time discussing this issue should not be overlooked.
Thank you for your leadership on that issue.
As we say oftentimes, in a former life I sold long--term-
care policies, so I recognize the importance of funding some of
the priorities that we have, especially on Alzheimer's and
other related dementia disease, that this is, in fact,
something that we are going to have to get our arms around, the
funding of the help for providing for this important disease.
I would ask the whole panel, A, I am not sure how familiar
you all are with the insurance business and long--term care;
but, B, I know that what we do not do very well is market the
importance of making decisions when you are in your 40's about
acquiring some of the policies when they are really affordable.
When you are in your 60's, that is a significant conversation,
but still an important conversation. I know that my mother, she
works as a nurse's aide. She is a caregiver and has been to my
grandmother who passed away with dementia as well as my
grandfather just four years ago, and as a 47-year practitioner
providing assistance and care, one of the options that she has
was buying a long-term-care policy at work. I would love to, A,
know do you all think we are doing a good job on marketing and
informing the public on the importance of making that decision
in their 40's while it is affordable; or, B, I know that it is
not the only answer because for some families we all recognize
that it would just not be affordable perhaps in any budget. I
do think that this is an important issue and a part of the
solution that we have not spent a lot of time on, as you
probably are already aware. I think that we need to do a better
job of informing, educating, marketing in communities that can
benefit from more information and more knowledge, not just on
what Medicaid does, because we typically get there at the end
and not at the beginning. There are some things that we could
do from a preemptive standpoint.
For the whole panel, I would love to hear your
recommendations or suggestions from a marketing standpoint. If
you do not want to talk about the long-term-care insurance
component, make sure that we have enough information coming
into communities, whether we should be doing field hearings,
frankly, in our states, in the communities where there is a
high concentration. This is such an important issue that
sometimes more information leads to better education, leads to
better outcomes, and then that reduces the spending trajectory
that we are on.
I will stop, and I know you have two doctors and two
amazing caregivers. I will stop and shut up and listen. If you
will turn your microphone on?
Dr. Supiano. Yes, so thank you, Senator Scott. It is an
important issue, and I will confess I am not competent to fully
delve into the health care economics of the long-term--care
insurance market, as you say, and how this could be better
promoted at younger ages when it would be more affordable. I
think you have correctly stated that for the majority of our
citizens who are saddled with education debts on their own or
for their children and all the other demands on their household
economics, long-term-care insurance is perhaps down on those
priorities.
Perhaps the solution--so I do not have the health care
economics solution in that respect, and I am not equipped with
enough information about how to address that need for long-
term-care insurance specifically. Perhaps a more general
solution, whether long-term-care services are being paid for by
the insurance industry or by the government, through Medicaid
or Medicare, perhaps a solution is to do what we can to find
models of care that are more affordable ways of providing long-
term-care services and supports.
For example, we know that the most expensive spectrum of
that care is in skilled nursing facilities or nursing homes, so
any strategies that we could invest in early on by supporting
people and advancing the home and community-based services we
have been talking about this morning, programs that I mentioned
in my testimony, the Care Ecosystem, the CAPABLE model, PACE
programs, other things like this to find more cost-effective
ways to deliver long-term-care services and supports in the
home on the front end, to avoid those perhaps ultimate
necessary space in long-term care, perhaps lowering the
ultimate cost of long-term-care services and supports is where
we should be focusing our attention, and then we can address
who the appropriate funder for that should be. That would be my
take on this.
Senator Tim Scott. Thank you, sir.
I am not sure if I have time, Chairman, for another
question. I will just go ahead until I see someone--I see
Senator Rosen. I am not sure if she is prepared to go now or
not. She is shaking her head yes, so I will stop talking. This
is interesting. All right. Thank you for sending those very
obvious cues to stop talking.
The Chairman. Ranking Member Scott, thank you.
We will turn to Senator Rosen.
Senator Rosen. Thank you. That is the challenge of Zooming
in. We are all running back and forth, so thank you. This is a
really important hearing. My mother-in--law was on the
Alzheimer's spectrum before she passed, and I know firsthand
how it worked, everything, all the work that is going on here,
the caregiving that it takes and what it feels like to be a
family member going through this.
Currently, one in nine Nevadans older than 65 live with
Alzheimer's disease, and, unfortunately, Nevada also has the
third fastest growing dementia population in the United States.
To respond to the challenges that Alzheimer's disease is
imposing on our state and, of course, all around this country,
Nevada's universities and research partners have stepped up in
a big way.
For example, the UNLV Center for Transformative
Neuroscience recently received a $3 million grant from the
National Institute on Aging which will help them publish their
annual review of Alzheimer's medications in the development
stage. Additionally, the Lou Ruvo Center for Brain Health in
Las Vegas also received a $3 million NIA grant to establish the
Nevada Exploratory Alzheimer's Disease Center, which is going
to help fill an existing research gap in how people living in
rural areas all across this country might experience
Alzheimer's disease.
Dr. Supiano, can you talk to us a little bit about how the
current lack of research on rural patients living with
Alzheimer's, the challenges they may have getting supportive
care, to help them treat the disease or cope with it and their
family members? How might this impact smaller communities and
populations? How do you think the research being conducted in
Nevada will inform providers and patients in this really
important conversation for all of us?
Dr. Supiano. Yes, thank you, Senator Rosen. As your
neighbor in Utah, I am very familiar with the demographics that
you describe, which are very similar in Utah as they are for
you in Nevada, and also the very rural nature of our two
states. You have raised a very important aspect of needs for
research to expand to these areas.
I mentioned earlier in my response to Senator Collins with
the support for the Geriatric Workforce Enhancement Program,
one of the things that we have been funded to do through our
GWEP is to reach out across the state and provide education and
support for staff in long-term-care settings across the State
of Utah. This includes an outreach to the tribal nations in
Utah--there are seven tribes in Utah--and important outreach to
Native Americans in addressing the health disparities and their
risk for cognitive impairment and dementia.
The other thing I brought up earlier is one of the
unintended consequences or benefit of COVID is that our ability
to deliver telehealth resources to rural areas has really
stepped up in the last year and opened up an opportunity. That
carries with it a need and perhaps a request in that respect,
as I know you would resonate with, is to better support
broadband access to rural communities so that those telehealth
delivers can be given.
The other aspect--and Ms. Lahmeyer spoke to this in terms
of support groups--is being able to distant support groups,
which we are doing through our GWEP program in Utah, to
disseminate the supports and the care that is needed across the
state to rural areas is another aspect of research that could
be further expanded.
It is a very important issue, and I think as your neighbor
we can work very closely with your investigators at the
University of Nevada and others to make those advances.
Senator Rosen. I look forward to that, and I want to just
add to that a little bit about respite care and how important
it is for those caregivers. Caregiving is a never-ending job,
24/7. It is oftentimes thankless. Finding respite care is
burdensome, costly. Family members can feel guilty who feel
that they need even a weekend off. I only have a few seconds,
so, Ms. Lahmeyer, a lot of caregivers face fatigue and burnout,
and so could expanding access to respite care--how do you think
it might help prevent elder abuse and just improve our
caregiving as you might see that?
Ms. Lahmeyer. Yes, we see so much stress in our caregivers,
and through our support groups and such, we are always offering
seminars and little workshops on managing stress and through
our Powerful Tools for Caregivers classes that are now over at
the University of Utah from Oregon, but we see the stress on
these caregivers just kind of melt away once they find out that
they can really take time to take care of themselves. Just like
the oxygen mask on the airplane, who do you put it on first? We
really try to educate our caregivers about the need to take
care of themselves. Being able to access vouchers and through a
respite coalition or through the Area Agencies on Aging, for
caregivers to be able to take a weekend off and have someone or
pay a family member through those vouchers to be able to go
into the home and stay with the family so the caregiver can get
a break. Even the four hours a day here at the ARK, the
caregivers just see the value and they feel so relieved when
they come to pick their loved on up in the afternoon and know
that they had a good time and the caregiver has had a break
away. That respite time is just so important for these
caregivers and also the education that they are able to provide
through our workshops and things.
Senator Rosen. Well, thank you all for your work. We all
care about our families and our parents and grandparents, and I
hope we all live better, longer, whether it is Alzheimer's or
other kinds of chronic diseases that may come along with aging,
and supporting our families who--we all love each other. We
want to take care of each other. That is really important.
Thank you, Mr. Chairman.
The Chairman. Senator Rosen, thanks very much. I want to
thank you for appearing in our hearing today. I will close out
with just some brief comments today.
First of all, I want to thank Ranking Member Scott and, as
he mentioned, our staffs who made this hearing possible.
I also want to thank, of course, our witnesses for their
testimony and their insights. I think Ranking Member Scott made
an excellent point earlier when he talked about how capable and
dedicated and experienced this witness panel was. We are
certainly grateful for that when we are discussing these
important issues that relate to Alzheimer's and dementia
generally.
As we lift the shroud of this pandemic, we also have to
think about how we can bolster supports for those afflicted
with Alzheimer's disease. Of course, that support also is
support for their families. We cannot leave them behind as we
head toward recovery. I believe that the American Rescue Plan
has made great strides toward ensuring that people will
disabilities and older adults can access services to help them
live full and meaningful lives.
Congress should also pass the American Jobs Plan to spur
economic growth and strengthen both our physical infrastructure
as well as our human infrastructure, so we can provide help to
families.
I was noting earlier and I did not make reference to it,
but I wanted to make reference to one line from Ms. Montanez's
statement. She said, and I am quoting--at the end of your
testimony, Katelyn, you said, ``I am here as a daughter, niece,
and granddaughter of Alzheimer's.'' When we talk about these
initiatives to help families in the upcoming opportunity, we
are, of course, thinking about families like hers. We are
grateful that each of our witnesses was willing to come and
provide the benefit of your experience, the benefit of your
family's experience, and, of course, the benefit of your
scholarship and work in this area. You have enlightened all of
us.
I will now turn to Ranking Member Scott, and then I will
just have some brief comments at the end. Ranking Member Scott?
Senator Tim Scott. Thank you, Chairman Casey, for your
dedication to this really important topic. To the Alzheimer's
Association, your stakeholders around the country, thank you
all for tuning in and spurring action on behalf of Congress.
This is, as I said at the beginning, not a Republican or a
Democrat issue. This is not even a bipartisan issue. This is an
American issue. This is a global issue that we have an
opportunity to lead on.
To the two caregivers on the panel, thank you both. Peg
Lahmeyer, from my great State of South Carolina, God bless you
for your work and dedication and sharing your story. Katelyn,
we certainly learned a lot listening to really the impact that
Alzheimer's is having on your life and so many others.
Dr. Manly, I think you have done a really good job of
pointing out the disparity within the Alzheimer's disease
itself. African Americans have a 57 percent more chance of
being diagnosed with Alzheimer's, and 63 percent of the folks
diagnosed in my State of South Carolina have been women. We are
going to focus our attention on making sure that we focus on
diversity in the trials that we are seeing in many of the drugs
that are coming forward, because that is a really important
component and one that I talked about during the pandemic for
the COVID vaccine. It is critically important in Alzheimer's as
well, and I think that there is a lot that we can do, that we
should do, and I think if we get it done, we will see the kind
of results that we need to bend that curve in the communities
that are most fragile and economically strapped.
I would also like to say that protecting our intellectual
property protections is so important for us to continue to
see--one of America's greatest assets is our IP, continue to
deliver more and more solutions and hopefully therapies for
Alzheimer's. It is one of the areas that we are a global
leader, and we need to maintain that biomedical innovation that
is creating solutions for the world's greatest diseases. In
short, innovation of this sort is an incredibly high-reward
proposition, but it is also high risk. We need to do everything
in our power that we can to encourage the dynamism and the all-
hands-on-deck approach that we have seen from the pandemic and
if we could transfer that to Alzheimer's, I think we would find
solutions faster.
The one thing I have learned about, when this country comes
together to fight back the greatest health care attack we have
seen in my lifetime, we get things done faster than ever.
Literally having a vaccine less than a year is something that
was said to be impossible to do, yet we had it done. If we had
the same energy and synergy toward Alzheimer's, I believe--and
I could be wrong, but I believe we could have similar results
in unbelievable time, whatever that is. I think with you all's
expertise and, frankly, with the pain of your stories, we can
move forward together in finding solution.
Chairman, thank you again for leading on this hearing, and
I look forward to your final thoughts.
The Chairman. Ranking Member Scott, thanks very much, and I
want to thank you for your work.
I also want to thank again our witnesses for their time
today and also the expertise and passion they bring to these
issues.
If any Senators have additional questions for the record or
statements to be added, the hearing record will be open for
seven days, until next Thursday, May 27th.
Thank you all for participating today, and this concludes
our hearing. Thanks, everybody.
[Whereupon, at 11:22 a.m., the Committee was adjourned.]
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APPENDIX
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Prepared Witness Statements
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[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Statement of Peg Lahmeyer, Executive Director and Co-Founder, The Ark
of South Carolina, Summerville, South Carolina
Thank you to the Senate Special Committee on Aging, Chairman,
Senator Casey and Ranking Member, Senator Scott. Thank you for the
opportunity to testify about my experiences as a caregiver and the
founder and Executive Director of The ARK of SC for 25+ years
Growing up in rural Alabama with older parents and much older
siblings, I witnessed how our family and extended family cared for each
other and nurtured each other during tough times and good times. These
impactful life experiences shaped my life.
My family expanded to Summerville, SC with a wonderful husband, 6
children and step children to include the adoption in 1986 of an ``at
risk'' teenager.
My mother was diagnosed at age 76 with Alzheimer's. Multiple visits
showed the continual decline for both of my parents. My father, age 80,
was Mother's caregiver for 8 years when he called to say he needed
help. We moved her to a long term care facility in Montgomery which was
45 miles from my dad. It was devastating for both of them. My father
died in 1990 at the age of 90. We moved Mother to live with us. I was
granted Conservatorship. Working full time, I resigned to be her
caregiver. I worked part time delivering newspapers so I could be at
home during the day.
After discussing the plight and needs for caregivers to ``have a
break'' and support, I was asked to start a group social respite at our
church. Brookdale National Group Respite Program provided seed grant
funding. In January 1996 The ARK opened its doors.
Needing skill care, my mother moved into an Alzheimer's specific
long term care in 1995 before The ARK opened. She died in 1997 at the
age of 93. Her legacy lives on through The ARK.
I sought every opportunity to speak to ANYONE--church, civic,
fraternal organizations, businesses, governmental groups, clubs and
anywhere there was an audience. The local Chapter of the Alzheimer's
Association in Charleston was just starting and I became involved in
many of their educational committees, fundraising, and eventually as a
Board Member.
As a previous business person, I believe in the power of the
Chamber of Commerce. Becoming a member has opened many doors for
support and growth. Nonprofits are essential to the community.
The ARK provides so much more than respite to five counties in the
Lowcountry of SC.
Services include:
Four Respite half days a week in Summerville
Bus Service provided since 2000
A Satellite respite center in Harleyville weekly
Four support groups in Berkeley and Dorchester counties
(one specific to wives only)
An Early Memory Loss Program weekly
The NOAH (Neighborhood Outreach Alzheimer's Help) Project provides:
Caregiver educational classes, memory screenings, health
and resource events
Law Enforcement/First Responders training-Evidenced based
and Certified through the S.C. Criminal Justice Academy
Workshops and train the trainer programs, both in person
and virtual
Powerful Tools for Caregivers (PTC)--6 week evidenced based
Class Leader Training (CLT) for Professionals
All of these services are provided by five full-time and four part-
time staff. They are devoted, passionate, fun loving, supportive and
caring.
In 2018, we acquired a home to move our services and staff to
enable expansion.
Through the shutdown and pandemic, our social program closed for 7
months. The Staff immediately started calling/emailing caregivers,
creating fun activity baskets that were delivered to their homes. Zoom
was our salvation for workshops and PTC/CLT, memory screenings, and
support groups. Caregivers and families felt less isolated and
connected. The CLT classes reached as far as Alaska and one in July
2021 includes British Columbia professionals.
When we returned to full time programming, we saw the decline in
our ARK families because of the isolation and lack of socialization and
realize how important our programs are for caregivers and care
receivers' well-being. Now, we are seeing the effects of dementia to
include not only the baby boomers but now the millennials are
experiencing caregiving and in some cases early onset dementia.
Funding for grassroots organizations is paramount. Additional State
funding for Aging services is critical especially for Alzheimer's
support programs. Families need to afford in home care as well. With
the support of South Carolina's Office on Aging we have been able to
build our education program. More funding for all aging services is
needed as the numbers are growing each and every day.
Thank you
Statement of Katelyn Montanez, Family Caregiver, Ephrata, Pennsylvania
Chairman Casey, Ranking Member Scott, and members of this
Committee, thank you for the opportunity to testify before the
Committee about my experiences as a caregiver for my father. My hope is
that, in sharing my story, others who are impacted by this disease will
feel less alone. I am a social worker and an advocate for my father and
for the millions of Americans who have family or loved ones living with
Alzheimer's and other dementia. I'm here today to share my personal
experience as a caregiver for my father, Luis, who was diagnosed with
younger-onset Alzheimer's at age 54.
More than 6 million Americans are living with Alzheimer's--my
father's story represents only one set of unique challenges which
individuals and caregivers live with every day. My hope is that my
testimony effectively conveys my father's story, and underscores the
importance of what this hearing is based around--expanding the support
of daily and long-term care needs of people with dementia, which
includes the support of their caregivers.
Like many other individuals, Alzheimer's disease can be traced
hereditarily in my family. My grandmother passed away from Alzheimer's
at age 62. My father's sister passed away last year from the disease,
and currently, another aunt of mine is living with the disease,
requiring her to reside in a nursing home.
My father began showing symptoms of Alzheimer's in his early 50's,
but he wasn't formally diagnosed until 2015 at the age of 54. After he
began displaying symptoms my family was familiar with, my parents
visited a few providers to see if they could figure out his
neurological and other health issues. Each doctor my father visited
didn't recognize the signs of younger-onset Alzheimer's. Prior to his
diagnosis, it became my mother's responsibility to attempt to
understand how to navigate resources that could be available to my
family. My dad was unable to earn a living for his family and just
stayed home, confused and disoriented. He had been a custodian at a
local school and now we were faced with a difficult new reality as a
family. My mom and I were both working full time and we were unable to
provide the 24-hour supervision he needed. The delay in diagnosis and
fragmented care he received, left us feeling frustrated, alone, and
unable to access much-needed supports and services. It was an
incredibly challenging time for us. At first, when he was assessed for
home- and community-based services, he wasn't eligible because he could
still do many things on his own-but that was only on good days. On bad
days, he wasn't able to do anything.
I am a social worker, I know the system well, and I had to fight to
get him the services he needed. Unfortunately, it took cutting through
many layers of red tape, hundreds of pages of paperwork, and most
distressing of all, nearly 5 years to receive the care and support
services he needed.
While the emotional toll of younger-onset Alzheimer's is something
which I have channeled into advocating for individuals like my father,
there are significant costs for individuals living with their disease
and their families. This placed a large financial responsibility on
both my mother and I as his caregivers and now the financial support
for our family. Of the total lifetime cost of caring for someone with
dementia, 70 percent is borne by families--either through out-of-pocket
health and long-term care expenses, or from the value of unpaid care. I
am part of that statistic--I ended up leaving my first year of graduate
school to come home in order to help with his care.
Last fall, we were fortunate enough to finally get him Medicaid
home and community-based services through the waiver program in
Pennsylvania. A medical social worker helped us through the application
process and with the numerous assessments and paperwork that had to be
done. It shouldn't be this hard for people to receive services they
need.
My father has been receiving home- and community-based services now
for about 7 months. I know this Committee's hearing today is focused on
the importance of these services, and I cannot tell you how thankful I
am that we have been able to have access to them. We recently had to
move my dad to my sister's house because my mom was no longer able to
take care of him. The transition was difficult because he understands
what is happening.
The services he's receiving give him an aide for 3 hours per day
and meals on wheels. When he was living with my mom, the aides would
help clean the house, help my dad with breakfast, and even take him on
short car rides. Now that he's living with my sister, the aides take
him on walks and sometimes even bring along my sister's dogs. The aides
also come in the evening to give my sister a chance to run errands and
have a break. We've also run into some issues: right now my sister
hasn't been able to find an aide for my dad because of the high burnout
and turnover rates.
With someone living with Alzheimer's or dementia, consistency of
care, including who is providing the care, is essential. Unfortunately,
burnout and turnover are very common with home health aides. Being an
aide is hard work with little pay. Aides should be paid more for the
work they do and have better access to dementia education and training
for their workers. If aides received proper training to work with
individuals living with Alzheimer's and dementia, they would have the
tools they need to help redirect, would understand common behavioral
issues, and it could lead to more successful interactions. People
living with Alzheimer's have good days and bad days and having better
trained aides who get paid higher wages would bring more consistency
for my dad, and a better quality of life for him and our family.
Congress has continued to keep Alzheimer's and dementia top of mind
when working on important issues like home- and community-based
services. Chairman Casey, I'm grateful for your leadership on this
important and deeply personal issue. I am a passionate advocate for my
dad and for others living with Alzheimer's and other dementia. It's
important to me that people living with Alzheimer's--including those
who are younger than 60--are able to receive the care and support they
need. Strengthening these services is not only essential, it will help
people like my father live with family members for as long as possible
before having to receive care in a nursing home setting. I want to
start my own non-profit to help families like mine to have better
access to available services to help the person they love remain at
home longer.
After my dad's diagnosis, it felt like a struggle to get the
information we now know we needed. The fragmented, improperly managed
care he received only added to our struggle. It would have been and
would continue to be incredibly beneficial to my family if we had more
comprehensive care for my dad. As you've heard from my testimony,
caring for an individual with Alzheimer's or another dementia poses
unique challenges. Thankfully, dementia care management can ease these
challenges, improve the quality of care, and reduce costs.
Unfortunately, dementia care management programs have not developed
within the current Medicare fee-for-service system. Legislation like
the bipartisan Comprehensive Care for Alzheimer's Act (S. 1125 / H.R.
2517) would ask the Center for Medicare and Medicaid Innovation to test
a different payment structure for dementia care management. It aims to
reach diverse populations, rural areas, and medically underserved
communities so everyone has an opportunity for more comprehensive care.
This bill has the potential to streamline today's complicated health
care maze for people living with dementia and their caregivers--making
this easier will provide a better quality of life for individuals like
my father.
I am Puerto Rican, and unfortunately that means I am at greater
risk of developing the disease. Hispanic Americans are one and one-half
times more likely to develop Alzheimer's disease but we are
historically underrepresented in Alzheimer's and other dementia
clinical trials. In fact, in 2018, across all clinical drug trials--not
just Alzheimer's--Hispanic Americans represented only 1 percent and
Black Americans represented only 5 percent of trial participants,
despite representing 18 percent and 13 percent of the population,
respectively. The best available evidence suggests that this trend is
similar in Alzheimer's research. The underrepresentation of these
populations, as well as Asian and Native Americans, not only hinders
the ability of researchers to understand these health disparities, it
also restricts their knowledge of how an approved drug or diagnostic
may affect the population most likely to need the therapy. Senators Ben
Ray Lujan and Collins introduced the bipartisan Equity in Neuroscience
and Alzheimer's Clinical Trials (ENACT) Act (H.R. 3085 / S. 1548), to
increase the participation of underrepresented populations in
Alzheimer's and other dementia clinical trials by expanding education
and outreach to these populations, encouraging the diversity of
clinical trial staff and reducing participation burden. I ask the
Committee and other Members of Congress to support this bill to ensure
current and future research includes increased numbers of Blacks,
Hispanics, Asian and Native Americans in clinical trials to ensure
everyone, including my family, benefits from advances in Alzheimer's
science.
Throughout the past few days, I've virtually joined the Alzheimer's
Impact Movement and the Alzheimer's Association, along with over 2,100
advocates from across the country to make a difference in our nation's
capital. I am here as a daughter, niece, and granddaughter of
Alzheimer's. We all are and we will continue to be a voice for people
who have lost theirs. Congress must ensure all communities have access
to high-quality, culturally appropriate services and supports.
Additionally, I respectfully ask you to increase access to home and
community-based services for individuals living with Alzheimer's and
dementia including individuals living with younger-onset Alzheimer's
disease or other dementia. Please continue to make Alzheimer's research
a priority and to work together to pass critical legislation like the
Comprehensive Care for Alzheimer's Act (S. 1125/H.R. 2517) and the
Equity in Neuroscience and Alzheimer's Clinical Trials (ENACT) Act (S.
1548/H.R. 3085) to help other families like mine receive the support
and services we all need and deserve. Thank you for inviting me to
speak, listening to my story, and for all you have done. Please
continue to join us in the fight to end Alzheimer's for generations to
come.
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Questions and Responses to the Record
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Questions for the record To Dr. Mark A. Supiano
From Senator Kelly
Question:
Dr. Supiano, in recent years, we've seen some really
exciting advancements in technology and artificial
intelligence, especially related to how AI can be used in
medicine. With Alzheimer's, we know it's important to diagnose
early, so neurons in the brain are still alive-before clinical
symptoms appear. In 2019 a study was done that used virtual
reality to help diagnose Alzheimer's because the part of the
brain that handles navigation skills is often among the first
targeted by this disease. If someone wears a VR headset, a
provider can gauge any navigation challenges the person is
facing, and that could be an early clue. If we can do this with
VR, what else do you think is on the horizon? In your opinion,
how far can technology take us to solve the Alzheimer's
epidemic?
Response:
It seems evident that advances in preventing and managing
the epidemic of Alzheimer's and Related Dementias (ADRD) will
need to derive from multiple dimensions - basic neuroscience,
public health measures to improve social determinants of
health, caregiver support, improving early child education, and
in the area of age-friendly living environments and dementia
friendly communities. In this context, technological advances
including in artificial intelligence (AI) will undoubtedly also
contribute to both improved, perhaps earlier, diagnosis and
management.
To cite one example of the level of interest in the VR
example you cite, failures in navigation due to topographical
disorientation are early markers of pathological aging,
particularly in Alzheimer's Disease. This year the University
of Utah Center on Aging program I direct funded a pilot grant
titled, "Effects of Older Age on Sensory Integration in
Navigation." (a psychologist, Dr. Sarah Creem-Regehr is the
Principal Investigator) The study is developing and testing the
feasibility of a VR paradigm that varies cues for navigation
and allows for assessment of performance. The project aims are
to identify and understand the changes in navigation that occur
as a new paradigm for assessing and identifying pathological
age-related cognitive decline.
Therefore, investments in technology and AI should be made
to complement the other areas I have listed.
Question:
Dr. Supiano, the Medicare Annual Wellness Visit requires a
structured cognitive assessment to take place. only 1 in 3
older adults know this is supposed to happen, and only 16
percent of those surveyed said it has taken place. Only 47
percent of primary care providers say the cognitive assessment
is part of their standard protocol. Those providers who don't
do the assessment say it's usually because the patient doesn't
have symptoms, or because the provider doesn't have enough
time.
This is a problem. If we aren't assessing patients, it's
more likely this disease will be caught too late and the damage
will be irreversible. as more treatments become available, this
time becomes more crucial.
From the federal level, what should we do to make sure the
right incentives are there for these evaluations and
assessments-and then, diagnoses-to take place?
Response:
Improving the completion rates for the Medicare Annual
Wellness Visit (AWV) among all Medicare beneficiaries and,
requiring an objective screening cognitive test are important
goals in two key respects.
First, the age-friendly health system initiative that is
becoming a prevalent feature of health systems across the
country is based on the goal of ensuring that every older adult
receives care that encompasses the four Geriatric "M" health
care domains (What matters most, mobility, medications and
mentation) at every encounter in the health system. (see:
http://www.ihi.org/Engage/Initiatives/Age-Friendly-Health-
Systems/Pages/default.aspx ) The AWV is structured to review
components in each of these four domains. Its completion each
year will ensure that this level of care is being delivered.
Second, as noted in your question, the AWV will not
adequately capture the mentation (dementia screening) "M"
absent requiring that an objective cognitive screening test be
included. The most recommended test that can be easily
integrated into the AWV is the "Mini-Cognitive Assessment."
This integration has been accomplished at the University of
Utah Health (and many others) and has been in place for many
years.
In addition, the 2021 Update to the National Plan to
Address Alzheimer's Disease (released December 2021, https://
aspe.hhs.gov/reports/national-plan-2021-update ) The plan's
Strategy 2.B to Ensure Timely and Accurate Diagnosis aligns
with the need to broadly screen for cognitive impairment.
Similarly, the state of Utah's State Alzheimer's Disease (2018-
2022, https://livingwell.utah.gov/docs/Alzheimers--
StatePlan.pdf ) includes a goal to create a "Dementia Aware
Utah," specifically to promote the use of Medicare preventive
service benefits for the detection of cognitive decline and/or
impairment, which commenced in 2011 under the Patient
Protection and Affordable Care Act. This would include the
addition of a cognitive screening assessment into the AWV.
Thus, at the Federal level, steps could be taken to tie
Medicare reimbursement and funding to an AWV cognitive
screening assessment requirement. In addition, setting
expectations that all health systems that receive Federal
funding are certified as "Age-Friendly Health Systems" would
advance this goal.
Questions for the record To Dr. Jennifer Manly
From Senator Kelly
Question:
Dr. Manly, over the next several years, Arizona is expected
to have the fastest growth rate in the country of people living
with Alzheimer's. It is especially concerning that Alzheimer's
is overrepresented and underdiagnosed in African American and
Latino communities.
Given your research, how will AI and new technologies
change our capabilities to diagnose Alzheimer's in African
American and Latino patients?
Response:
Dear Senator Mark Kelly,
One of the major barriers to diagnosing Alzheimer's disease
(AD) in minoritized populations is lack of access to specialty
behavioral health services, such as neurologists,
psychiatrists, geriatricians, and neuropsychologists.
Telehealth is an important technological tool that will help
meet the high demand for dementia diagnosis and care in
underserved communities. Expansion of Federal investment in
culturally relevant telehealth solutions is necessary for this
tool to be beneficial in these populations.1
There have also been several new and exciting studies
looking at how AI models can predict subtle changes in
functioning that are often early markers of AD. Some of these
algorithms use clinical information, like medical history,
brain imaging, and cognitive test performance,2,3 to
predict AD years before diagnosis. Other algorithms have used
more real-world everyday markers, such as speech patterns and
word usage4 or missed payments on credit accounts
and subprime credit scores.5
These technological advances have the potential to
improve access for minoritized populations by reducing the
necessity of traveling to a clinic. They also have the
potential to reduce provider bias in making specialist
referrals by alerting providers of patients most at risk for
AD. However, these approaches can only be as accurate,
reliable, and helpful as the data they're given. Minoritized
populations are less likely to be represented in the datasets
that AI algorithms are developed.6 This raises the
potential for algorithmic biases that may further increase AD
disparities. While more research is required to maximize use of
AI and new technologies for earlier and more accurate detection
of AD, it is imperative that African American, Latinx,
Indigenous, and Asian people be included in this research as
participants and in research leadership positions. This should
be a requirement that is tied to funding.
References:
1. Mudrazija S, Vega WA, Resendez J, Monroe S. Place &
Brain Health Equity: Understanding the County-Level Impacts of
Alzheimer's. Urban Institute. Published November 19, 2020.
Accessed May 18, 2021. https://www.urban.org/research/
publication/place-brainhealth-equity-understanding-county-
level-impacts-alzheimers
2. Mathotaarachchi S, Pascoal TA, Shin M, et al.
Identifying incipient dementia individuals using machine
learning and amyloid imaging. Neurobiol Aging. 2017;59:80-90.
doi:10.1016/j.neurobiolaging.2017.06.027
3. Bhagwat N, Viviano JD, Voineskos AN, Chakravarty MM,
Initiative ADN. Modeling and prediction of clinical symptom
trajectories in Alzheimer's disease using longitudinal data.
PLOS Comput Biol. 2018;14(9):e1006376. doi:10.1371/
journal.pcbi.1006376
4. Eyigoz E, Mathur S, Santamaria M, Cecchi G, Naylor M.
Linguistic markers predict onset of Alzheimer's disease.
EClinicalMedicine. 2020;28. doi:10.1016/j.eclinm.2020.100583
5. Nicholas LH, Langa KM, Bynum JPW, Hsu JW. Financial
Presentation of Alzheimer Disease and Related Dementias. JAMA
Intern Med. 2021;181(2):220-227. doi:10.1001/
jamainternmed.2020.6432
6. Pham Q, Gamble A, Hearn J, Cafazzo JA. The Need for
Ethnoracial Equity in Artificial Intelligence for Diabetes
Management: Review and Recommendations. J Med Internet Res.
2021;23(2):e22320. doi:10.2196/22320
Questions for the record To Peg Lahmeyer and Katelyn Montanez
From Senator Kelly
Question:
Ms. Lahmeyer and Ms. Montanez, in Arizona, the Pima Council
on Aging in Tucson received a $1 million grant last year from
the Administration on Community Living to support individuals
living with Alzheimer's and dementia. PCOA is planning to use
their grant funding on initiatives to help Tucson become a more
dementia-friendly community, improve screening and referral of
people with Alzheimer's through client service systems, create
memory cafes-which provide individuals with Alzheimer's and
dementia a safe space to socialize and surround themselves with
people with similar experiences-and partner with local
businesses to train and support caregivers in the workplace.
I want to ask about this last piece that's based on a
concept called United for Caregivers@Work. The idea is that so
many people are caregivers in their personal lives, but that
doesn't just impact their personal lives-it impacts their
professional lives too. It impacts their whole lives.
Could you speak to the difference it makes for companies
and employers to step up in this way? What are the most
important strategies for employers to use to support employee
caregivers? What strategies aren't widespread enough?
Response from Ms. Lahmeyer:
Senator Kelly, Thank you for these great questions.
1) Could you speak to the difference it makes for companies
and employers to step up in this way?
Provide a more holistic approach of care to include family,
caregiver, care receiver, AND workplace. With this support the
employer would see less absenteeism, more productivity, and
better mental health for the employee. More than likely fewer
workplace injuries causing Workers' Compensation claims because
the caregiver/employee is being recognized and supported.
Providing a work environment where the employee/caregiver
feels no fear, retaliation or repercussions if and when they
voice their need to have Family Leave to fulfill the needs of
their care receiver at home. Without this understanding, the
employee often has to leave their loved one at home to come to
work and then be distracted and worried throughout the work day
which interferes with job performance.
2) What are the most important strategies for employers to
use to support employee caregivers?
Many caregivers are working while facing the stresses of
caregiving and needing to work weigh heavily on their shoulders
which affects their well-being both at home and at work.
a. Workplace support should include offering Lunch and
Learns about managing stress and/or after work support groups
for family caregivers to have education and learn of outside
resources. From these education opportunities, they learn they
are not alone.
b. Partnering with the community to offer ``In House''
Resource Fairs at least annually that include health
screenings, memory screenings, community resources such as in-
home care, day programs for care receivers, hospice care, long
term care, medical support, aging networks
c. Offer Flex Hours to enable employee to adjust work
hours to handle caregiver needs
d. Provide paid personal days in addition to PTO
e. Create a Caregiver Account that employees can input
funds for future use with Employer Match
f. Tax Relief for Employers who provide the Caregiver
Account to employees
3) What strategies aren't widespread enough?
As far as we are aware, there is no standard model program
to support caregivers in the workplace. We have worked with
companies individually.
We would like to learn more and work toward some of these
suggestions being implemented. Thank you
Response from Ms. Montanez:
I wholeheartedly agree that being a caregiver for an
individual living with Alzheimer's or dementia is a duty which
impacts every aspect of a caregiver's life, both personally and
professionally. As an advocate, I believe supporting
initiatives such as paid family leave, general flexibility for
caregivers to take care of loved ones, and informational
resources and support are positive initiatives employers could
take in helping individuals with Alzheimer's and other
dementias and unpaid family caregivers.
As I mentioned in my testimony, there are emotional costs
and quantifiable costs associated with caregiving. My own
experiences included both my mother and I acting as caregivers
and as the main means of financial support for my father and
our family. Even as my father is currently having my sister act
as his full-time primary caregiver, the end of the pandemic
will require her to be back in an office setting. There are
many unknown elements about what that will mean for her job,
and the flexibility she will likely need while trying to
balance her career and taking care of our dad.
It's clear to me that without a national paid family leave
policy, many caregivers are at risk having to make a choice of
taking care of a loved one or losing their job and income. The
Committee's interest in caregiver support resources encourages
me that these challenges can continue to be worked on for my
family and millions of other families like mine.
Questions for the record To Peg Lahmeyer
From Senator Lee
Question:
Ms. Lahmeyer, several members of this committee and I have
been working for a while now to extend and expand a "universal
charitable deduction." The UCD, as we call it, would enable
everyone who gives to charity to receive tax relief (typically,
only higher-income individuals are able to deduct their
charitable giving from the taxes they owe). Studies of the UCD
suggest that it would stimulate small-dollar giving and
strengthen ties between Americans, their communities, and local
institutions.
How have local support and small-dollar giving played a
role in ARK's success in caring for Alzheimer's patients in the
Charleston area?
Response:
Senator Lee, Thank you for this great question.
Without local support and small dollar giving we would not
be able to provide essential services to our families attending
The ARK. Many local organizations and businesses have not only
contributed monetarily but have donated supplies to The ARK for
our respite programs and educational classes. Local support
allows us to continue making a difference in the lives of those
living with this debilitating disease and the caregivers
providing care for them. This raises awareness with the
business and private sector communities.
Some of the ways they contribute besides monetarily
include:
Corporate donors donate daily supplies to operate
the respite center
In-Kind donations from local businesses for
property and repair needs include services needed such as lawn
maintenance, bus repair, HVAC needs, meals for donor and staff/
board events. In trade the donor receives sponsorship and
advertising opportunities/perks for our signature fundraising
events such as our Annual Race for The ARK (22 years) and
Dancing with The ARK's Stars (11 years)
Restaurants offer mini fundraisers to donate a
percentage of their sales to the charity
Memorials designated to the charity
Staff Give Back--members make monthly donations
and contribute mileage for job obligations
This local support and small-dollar giving makes it a
success, raises awareness, and supports all of our programs.
Although we concentrate on five Lowcountry counties we never
turn down a valid resource and request for help.
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Additional Statements for the Record
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