[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

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

            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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