[Senate Hearing 107-368]
[From the U.S. Government Publishing Office]
S. Hrg. 107-368
ALZHEIMER'S RESEARCH AND CARE: HELPING PATIENTS AND FAMILIES
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON AGING
OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED SEVENTH CONGRESS
SECOND SESSION
ON
EXAMINING THE ISSUE OF ALZHEIMER'S AND THE ROLE THAT THE COMMITTEE
PLAYS IN THE REAUTHORIZATION OF THE LEGISLATION
__________
APRIL 2, 2002 (BALTIMORE, MD)
__________
Printed for the use of the Committee on Health, Education, Labor, and
Pensions
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78-599 WASHINGTON : 2002
___________________________________________________________________________
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COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
EDWARD M. KENNEDY, Massachusetts, Chairman
CHRISTOPHER J. DODD, Connecticut JUDD GREGG, New Hampshire
TOM HARKIN, Iowa BILL FRIST, Tennessee
BARBARA A. MIKULSKI, Maryland MICHAEL B. ENZI, Wyoming
JAMES M. JEFFORDS (I), Vermont TIM HUTCHINSON, Arkansas
JEFF BINGAMAN, New Mexico JOHN W. WARNER, Virginia
PAUL D. WELLSTONE, Minnesota CHRISTOPHER S. BOND, Missouri
PATTY MURRAY, Washington PAT ROBERTS, Kansas
JACK REED, Rhode Island SUSAN M. COLLINS, Maine
JOHN EDWARDS, North Carolina JEFF SESSIONS, Alabama
HILLARY RODHAM CLINTON, New York MIKE DeWINE, Ohio
J. Michael Myers, Staff Director and Chief Counsel
Townsend Lange McNitt, Minority Staff Director
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Subcommittee on Aging
BARBARA A. MIKULSKI, Maryland, Chairman
CHRISTOPHER J. DODD, Connecticut TIM HUTCHINSON, Arkansas
PATTY MURRAY, Washington JUDD GREGG, New Hampshire
JOHN EDWARDS, North Carolina JOHN W. WARNER, Virginia
HILLARY RODHAM CLINTON, New York PAT ROBERTS, Kansas
Rhonda Richards, Staff Director
C. Kate Lambrew Hull, Minority Staff Director
C O N T E N T S
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STATEMENTS
Tuesday, April 2, 2002
Page
Mikulski, Hon. Barbara A., a U.S. Senator from the State of
Maryland....................................................... 1
Prepared statement........................................... 3
Hutchinson, Hon. Tim, a U.S. Senator from the State of Arkansas.. 5
Savage, Peter V., caregiver, Baltimore, MD....................... 6
Prepared statement........................................... 32
Naugle, Cass, Executive Director, Central Maryland Chapter,
Alzheimer's Association........................................ 8
Prepared statement........................................... 33
Salerno, Judith A., M.D., Deputy Director, National Institute on
Aging, National Institutes of Health........................... 18
Prepared statement........................................... 36
Lyketsos, Constantine G., M.D., professor, Johns Hopkins
University School of Medicine, Baltimore, MD, on behalf of the
Alzheimer's Association........................................ 20
Prepared statement........................................... 39
Additional Material
Vaeth, Sue, Senior Care Manager, Maryland Department of Aging,
Baltimore, MD.................................................. 34
Nyankale, Henrique S., Caregiver, Gaithersburg, MD............... 42
ALZHEIMER'S RESEARCH AND CARE: HELPING PATIENTS AND FAMILIES
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TUESDAY, APRIL 2, 2002
U.S. Senate,
Subcommittee on Aging,
Committee on Health, Education, Labor, and Pensions,
Washington, DC
The subcommittee met, pursuant to notice, at 10:10 a.m., at
the Gerontology Research Center, Johns Hopkins Bayview Medical
Center, Baltimore, Maryland, Hon. Barbara A. Mikulski [chairman
of the subcommittee] presiding.
Present: Senator Mikulski.
Opening Statement of Senator Mikulski
Senator Mikulski. Good morning, everybody.
The United States Senate Committee on Health, Education,
Labor, and Pensions will come to order.
This is a hearing of the Subcommittee on Aging, of which I
am the chairperson, and it is a field hearing on the issue of
Alzheimer's and the role that the committee plays in the
reauthorization of Alzheimer's legislation.
I am glad to be once again back at Bayview, where I visited
in 1999. At that time, I said that I was very deeply troubled
that the National Institute on Aging's budget was quite
spartan, that it was close to $600 million, when Alzheimer's is
one of the most devastating chronic conditions to affect
primarily older Americans.
At that time, the National Institute on Aging's budget was
$600 million. That was for the whole National Institute on
Aging, including diabetes, cardiovascular disease, Parkinson's,
and Alzheimer's. Alzheimer's research got $323 million, and I
knew that we needed more money to come up with more ideas on
how to deal with both the issues of aging, health, as well as
Alzheimer's.
At that time, I said to my constituents here that I
promised to fight for more funding for the National Institute
on Aging. I was not going to fight just for incremental
increases; I said that I was going to work my earrings off to
double the funding for the National Institute on Aging. Well, I
have my earrings here; I worked them off. And I am happy to
announce today that when we pass the appropriations bills this
year, we will have doubled the funding for the National
Institute on Aging.
I have a little saying, which is that ``each and every one
of us can make a difference,'' and I know that all of you in
this room are already making a difference, from the researchers
who are working
[[Page 2]]
so hard on cures and cognitive stretch-outs to the advocates
who speak up for the families of those with Alzheimer's to the
caregivers as well as the public policy administrators. Each of
you has made a difference, but we have all worked together on
this change, and I believe that when we do work together, we do
make change.
This year when we implement the President's request, the
National Institute on Aging budget will be $1 billion--$1
billion. Alzheimer's research for this year will go from a
little over $300 million in 1998 to $600 million. This is
really a great victory, and everybody in this room has worked
so hard, as well as your counterparts nationwide.
Now, this is not about money; it is really about mission.
Doubling the budget for the National Institute on Aging is
paying off. I took a tour this morning to see what the research
looks like. Scientists have found evidence that a drug that is
now used to lower cholesterol might prevent Alzheimer's.
Researchers are testing a vaccine on mice that might also help
deal with these issues.
There are currently seven clinical trials looking at
whether estrogen, Vitamin E, and even aspirin might help to
prevent Alzheimer's or prevent the onset of Alzheimer's, in
other words, delay the onset.
Cutting-edge research demands cutting-edge facilities. When
I took this tour 3 years ago, the building in which world-class
research was going on was really a third-class building. World-
class research needs world-class facilities.
So Senator Sarbanes, Congressman Ben Cardin and I teamed up
with Hopkins to outwit the General Services Administration on
how we could get you a new building faster, cheaper, and
better-equipped on the drawing board. We won that victory, and
next year, we are going to have a groundbreaking for a new
facility that will mean better labs, better collaboration, and
the ability to do better research.
So we now have the money, we now have the building, because
we know that more needs to be done. Alzheimer's disease is a
devastating illness. One in 10 people over 65 and nearly half
of those over 85 will experience it.
The issue of family caregiving, on which I will be holding
a hearing later on in the spring, means that caregiving
families through their own family sweat equity really put into
the economy. If caregivers were to be paid a wage for what they
do for their own families, their spouse, their parent or
whatever, it would come out to about $196 billion of real sweat
equity from the American people.
We need to get help to those who practice self-help, and
not only breakthroughs, but cures and cognitive ability to
stretch out and help for the caregiver.
So we will be hearing more about these issues as this
hearing is going on.
I have recently introduced a bill to make sure that
Alzheimer's families have the support they need, both in the
lab and in the community. With Senator Kennedy and Senator
Clinton, and also on a bipartisan basis, we have introduced
legislation to be able to do this, to be able to improve the
care of patients, and again, we will talk more about that.
[[Page 3]]
But I want to listen to you now. Yes, I have fought hard
for the funding for Alzheimer's research and care, because I
understand what it does to families. My dear father had
Alzheimer's. I have said that I watched my father die one brain
cell at a time. My father was a very modest man, a hardworking
man. He owned a grocery store just a few blocks from this
building where we sit today. My father would not have wanted a
big monument built to him, but he would have been very proud
that the young lady that he sacrificed so much to send to
school was out there to help other dads like himself. He and my
mother raised me to be a fighter, to stand up for what is
right, and I believe that the commandment of ``Honor your
mother and your father'' is not only a good commandment to live
by, but it is also a very good commandment to govern by. This
is why I work so hard on issues affecting aging.
We used Bayview; we had the geriatric evaluation under Dr.
John Burton. Dad used the Mason Lord adult daycare that was so
important to both care for him and give my mother a bit of a
breather. And then, as a very young social worker, I was also
out here when Mason Lord and Mazie Rappaport, a social worker,
were doing pioneering work.
Wherever pioneering thought was given and where compassion
was linked with care and research, it was right here at
Bayview, right here on this campus.
So we are very pleased to be here and be able to be an
advocate and make sure that families that have worked hard all
of their lives will have the opportunity to enjoy that life.
With that, I will conclude my remarks and turn to our
witnesses.
[The prepared statement of Senator Mikulski follows:]
Prepared Statement of Senator Mikulski
I'm happy to be back here at Bayview. The last time I was
here was in June 1999. The National Institute on Aging's budget
was spartan, just $597 million. Alzheimer's research got just
$323 million. I promised to fight for more funding for the
National Institute on Aging. Not just an incremental increase--
I promised to double the funding.
I have good news to share with you. I've kept that promise.
The National Institute on Aging's budget will be more than $1
billion this year. That's double what it was 5 years ago.
Alzheimer's research this year will receive more than $600
million. It's a great victory because of the important work
done here at Bayview.
Doubling the budget for the National Institute on Aging is
paying off. Scientists have found evidence that a cholesterol-
lowering drug may prevent Alzheimer's. Researchers are testing
a vaccine on mice that may prevent the disease in humans. Seven
clinical trials are currently underway to find out whether
estrogen, vitamin E, gingko biloba, and aspirin help to prevent
Alzheimer's.
This cutting edge research demands cutting edge facilities.
That's why I fought, with the help of Senator Sarbanes and
Congressman Cardin, to make sure NIA research will have a new
state-of-the art facility here at Bayview. A new facility means
better labs, better collaboration by working together at
central location, and a better chance of recruiting the best
researchers from around the world.
[[Page 4]]
Even with these victories, there is still a lot more to do.
Alzheimer's Disease is a devastating illness. Four million
Americans suffer from Alzheimer's, including one in ten people
over age 65 and nearly half of those over age 85. Nineteen
million Americans say they have a family member with the
disease. The Medicare program alone spent $31.9 billion for the
care of people with Alzheimer's disease in the year 2000.
Without a cure, the number of Alzheimer's patients will more
than triple in the next 50 years. Fourteen million Americans
will suffer from Alzheimer's by 2050. If science can help delay
the onset of Alzheimer's by even 5 years, it would improve the
lives of millions of families and save billions of dollars.
Now I'm fighting to make sure Alzheimer's families have the
support they need, both in the lab and in the community. I have
introduced legislation that helps to meet the day-to-day needs
of seniors and the long-range needs of our Nation. This bill
reauthorizes the Alzheimer's Demonstration Program that helps
patients and families get support services like respite care
and home health care. It connects public and private resources
to improve the care for patients and their families. And, it
focuses on helping the people who are hardest to reach or
underserved. This important program is set to expire this year.
I'm fighting instead to expand this program to every State, to
keep our promises to America's families. I look forward to
hearing from Cass Naugle today about the Demonstration Program
in Maryland and others like it around the country.
My bill also addresses the long term needs of our aging
Nation by expanding Alzheimer's research at the National
Institute on Aging. It expands the Alzheimer's Disease
Prevention Initiative to speed up the discovery of new ways to
prevent the disease. My bill establishes a research program on
ways to help caregivers of Alzheimer's patients.
I fight hard for more funding for Alzheimer's research and
care because I understand what Alzheimer's does to those who
have it and their families. My dear father suffered from
Alzheimer's. We had hoped it was a vitamin deficiency, and all
he needed was for the family to pitch in and send Mom and Dad
on a cruise. Instead the diagnosis was Alzheimer's. My family
and I watched him die one brain cell at a time. My Dad got care
right here at Mason Lord. He had a geriatric evaluation and
went to adult daycare. I believe that ``Honor Thy Father and
Mother'' is not only a good commandment to live by, it's a good
policy to govern by.
Thank you all for coming to today's hearing on Alzheimer's
Disease, especially those of you who took time off from work or
away from your loved ones to be here. I hope that by coming to
you we've made this a little easier. We have two panels today
to discuss where we need to go in terms of research and care:
Peter Savage, who cares for his wife, Ina, and Cass Naugle,
Executive Director of Central Maryland Alzheimer's Association,
will testify on the first panel. Dr. Judy Salerno, Deputy
Director of NIA, and Dr. Constantine Lyketsos, a researcher at
Johns Hopkins University, will testify on the second panel.
Thank you for your great work and commitment to this fight.
I am looking forward to our discussion.
[[Page 5]]
Senator Mikulski. Before we begin I have a statement of
Senator Hutchinson.
[The prepared statement of Senator Hutchinson follows:]
Prepared Statement of Senator Hutchinson
Senator Mikulski, thank you for holding this hearing today.
As an original co-sponsor of S. 2059, the Alzheimer's Disease
Research, Prevention and Care Act of 2002, I want to express my
strong support for your efforts, Madame Chairman, to promote
Alzheimer's research and awareness. Alzheimer's is a
degenerative neurological disorder that is the leading cause of
dementia, which results in impaired thinking, memory, and
behavior. It currently afflicts nearly 4 million Americans, a
number which is estimated to increase to approximately 14
million Americans by 2050 unless science finds a cure or a way
to prevent the disease.
The cause of Alzheimer's disease is currently unknown, and
the medications available only slow the progress of the
disease. Seventy percent of Alzheimer's patients are cared for
at home by family or friends. Their home care will cost an
average of $12,500 per year. Many of these patients need to
live in assisted living or long-term care facilities, however.
Nursing care for these patients can often exceed $40,000 per
year. The total cost of Alzheimer's care in the United States
today is estimated at almost $100 billion annually. With the
aging baby boomer generation approaching retirement, millions
of Americans will continue to be affected by this horrible
disease. The need for a cure has never been greater.
To help scientists and medical researchers find a cure, I
joined Senator Mikulski in supporting S. 2059, the Alzheimer's
Disease Research, Prevention, and Care Act of 2002. This
important legislation recognizes that the most effective way to
curb the number of patients affected by Alzheimer's disease is
to find a way to prevent it before it starts. The bill
authorizes the Alzheimer's Disease Prevention Initiative, which
directs the National Institute on Aging (NIA) to focus its
efforts on identifying possible preventive interventions and
undertaking clinical trials to test their effectiveness.
In addition, S. 2059 will reauthorize the Alzheimer's
Demonstration Grant Program to develop and replicate innovative
ways to provide care to Alzheimer's patients that are
traditionally hard to reach or underserved. It expands the
program by providing funding to support programs in every
State. The Alzheimer's Disease Research, Prevention and Care
Act also authorizes $1.5 billion for the NIA for research and
development, as well as establishing a program to conduct
caregiver research.
Making the investment to treat Alzheimer's disease today
means healthier lives for everyone tomorrow. We will find a
treatment for Alzheimer's, but first we must make the
commitment to invest the resources now to prevent this disease
from continuing its progression undeterred.
Senator Mikulski. I believe that the best ideas come from
the people, so we are going to have two panels today. Our first
panel includes Mr. Peter Savage, an old friend and someone I
have known over the years who comes with great first-hand
experience; and also, Cass Naugle, who is Executive Director of
the Central
[[Page 6]]
Maryland Chapter of the Alzheimer's Association. Following
that, we will hear from the researchers on our second panel.
Mr. Savage, we welcome you here and look forward to your
testimony. I know that you have first-hand insights that you
would like to share with us.
Ms. Naugle, I know that you have overseen the growth of the
Central Maryland Chapter of the Alzheimer's Association. When
you took over, they had a budget of $50,000; it is now $1.4
million. I thought I was doing well doubling the NIA budget; I
have got to talk to you. You have a lot of secrets to tell me.
But I know that in addition to being an advocate, you look out
for your mom, who is also dealing with this issue, and you know
the pain first-hand.
Mr. Savage, please go ahead.
STATEMENT OF PETER V. SAVAGE, CAREGIVER, BALTIMORE, MD
Mr. Savage. Thank you.
On behalf of three daughters who are at risk, Senator, I
would like to thank you very much for your efforts, because I
have the problem directly, but I also have the fear of the
problem indirectly, and that funding, it seems to me, is going
to make a difference. I was asked to talk about the effects of
Alzheimer's on family and access to research, which I will try
to do.
It seems to me that there are really no generalizations,
because each family's situation is slightly different. The
progress of the disease manifests itself at different speeds,
and where the disease goes quickly, it overcomes emotional
defenses and financial resources and, I would imagine, leaves
chaos. That has not been my case.
My wife, being Brazilian, and our family approach being an
extended family support system, our approach has been--you talk
about sweat equity--a lot of family and extended family and a
lot of friends who are involved. Each daughter has been a part
of research on what has been done. One looked into elder care;
one looked at eldercare lawyers; another looked into
Alzheimer's support groups, which is how we got to meet Cass.
And when full-time support was necessary, they finally placed
an ad in the newspaper, and after many mistakes, we found that
not necessarily nurses were appropriate, but people who were
really resourceful were appropriate. We went through 35
interviewees and finally found a group of people who could
serve as a support group for my wife on an around-the-clock
basis.
And I would emphasize that perhaps the most important thing
in the success of that effort was the compatibility of those
people with my wife. My wife does not tolerate fools gladly,
and there are a lot of people in this business who will tell
you, ``I do not do windows, and I do not do this, and I do not
do that''--and that is not helpful. What you really need is
somebody who can take on the responsibility of dealing with
someone who has a flexible agenda and a menu of things that are
needed.
Part of the problem in the case of my wife was that she was
such a super-confident person to begin with. She still speaks
two or three languages, but she spoke five languages. She ran a
very tight ship when she ran the household. She brought up
three very sane
[[Page 7]]
children, and for better or for worse, she is one of those 30
percent of the people who knows full well what is going on and
exactly what are the consequences of where we are going. That
produces tears occasionally.
There are still some outstanding issues which we have to
face. We have not dealt with all of them. We still have to deal
with long-term health care or home care, and there is the
possibility of institutionalization, and then the question of
how the resources will go to pay for that; and there is
increasing dependency.
I would say that in this struggle, there have been some
heroes and some villains in the process. I can say that a
competent eldercare lawyer--he or she--is clearly one of those
heroes. And I will not name names, but I can just say that
there are a number of people who are highly recommended. And
indeed, I came through Cass Naugle and through Alzheimer's
Association and through the recommendations of support groups
to find exactly the person or people whom we needed.
I would say that one hero is Dr. Claudia Kawas, formerly of
the Johns Hopkins Bayview Neurological Center. Those at
Shepherd Pratt who determined that my wife had Alzheimer's in
1995 sent us to her as one of the alternatives, and when she
was conducting clinical trials, she slotted Ina for the
appropriate place and was very helpful.
She also believed in psychological counseling, saying that
it was not a dead-end disease where you just throw people out
once they get this disease. So we then worked out with Dr.
Koliatsos of Shepherd Pratt and their neuropsychiatric program
so that Ina has care and attention, and that is a really good
settling influence. It means that you see a psychologist, or
you see a social worker, and you have rules of discussion so
that when you have problems in the household, you have somebody
to go to who is really an arbiter, and that has been no end of
help.
I would also say that there are some villains in this
fight, and one of the villains is the insurance companies who
deny coverage by reason of pre-existing conditions. That is a
problem that we have overcome by incorporating; we had to do
that to get around that problem. But even so, for example, the
Johns Hopkins neuropsychology service cannot accept our
insurance because the costs just are not covered, so that
something is automatically eliminated.
I would also say that the worst villain is Social Security.
They play by their own rules. They do not accept the power-of-
attorney. They do not accept a signature stamp. They clearly
have a policy of lack of helpful cooperation from the start,
and they deny applications just readily. In my case, there is a
complicated issue which I am going to have to hire a lawyer to
solve.
Remedies--I cannot say that there is any easy one, but get
a sense of humor; talk through the problems, including the
patient in the discussions. We are now writing a book of 101
bad Alzheimer's jokes. It starts with Easter: One of the
benefits of Alzheimer's is that a patient can hide her own
Easter eggs.
Thank you very much.
[The prepared statement of Mr. Savage may be found in
additional material.]
[[Page 8]]
Senator Mikulski. Thank you very much, Mr. Savage. You have
raised some very important issues, one of which is the whole
issue of medical care and even how, while we are talking about
health insurance, the HMO situation, and so on, there is also
even a question of what Medicare would pay for.
The Bush administration has made changes which I found out
by reading the newspaper. After you conclude your testimony and
before we go to the research panel, I am going to ask Ms.
Richards on my staff to share with you what we know about what
the changes are, because I think we have got to be able to get
this out to the community.
Thank you very much for your testimony, and I want to
acknowledge your wife being here and the great dignity with
which she presents herself.
Mr. Savage. Thank you.
Senator Mikulski. Cass Naugle.
STATEMENT OF CASS NAUGLE, EXECUTIVE DIRECTOR, CENTRAL MARYLAND
CHAPTER, ALZHEIMER'S ASSOCIATION
Ms. Naugle. Senator Mikulski, I am pleased to have the
opportunity to discuss the impact of the Alzheimer's Disease
Demonstration Grants to States Program. This program was
created in recognition that 4 million Americans are affected by
Alzheimer's disease and that most of their care is provided in
the community by family members.
The goals of the Alzheimer's Disease Demonstration Grants
to States Program are to increase the availability of
supportive services for people with Alzheimer's and their
caregivers and to assure that these services are effectively
coordinated.
In addition to working as executive director of an
Alzheimer's Association chapter, I have experienced this
disease first-hand. First, my father's sister, who helped raise
me, developed Alzheimer's, then, my mother's younger brother.
My father was then diagnosed, and we cared for him at home for
3 years until he passed away last June. Now my mom is a victim
of this disease.
Using adult day services and in-home caregivers, my
siblings and I are able to keep her in her home, which is very
important to her right now. This is the home where she was
born, where she raised eight children, and where she lived with
my father for 62 years.
As difficult as it has been to lose people I love to this
disease, I know that my family was fortunate. I knew what
questions to ask about our family members' care, and I knew
where to go for answers to their care needs.
Unfortunately, too often, this is not the case. Finding the
way through a complex system of community services can be
frustrating to families who are already overwhelmed by the
challenges of caregiving.
In working with families at the Alzheimer's Association,
the saddest thing I have ever heard from a caregiver is: ``I
wish I had known about these services when my family member was
still alive.''
The Alzheimer's Disease Demonstration Grants to States
Program helps States to assure that community services are
accessible and appropriate for the unique needs of people with
Alzheimer's
[[Page 9]]
and their families. The initial program from 1992 to 2000 was
created to address the needs of underserved families and gaps
in community services. Twenty-nine States received funding
through this program.
With this funding, States were able to develop outreach and
other services for underserved families in rural and urban
areas and also diverse ethnic populations. The program also
funded the development of a wealth of training materials for
primary and long-term care providers of people with
Alzheimer's.
There is a current phase of the Alzheimer's grant program
that has funded nine additional States, and the goal of this
program is to integrate the dementia services that were
developed into the mainstream home and community-based care
system.
Maryland has benefitted from this funding in both of the
programs, and it has really made a difference for families
coping with Alzheimer's. It enabled the four Alzheimer's
Association chapters in Maryland to reach thousands of families
who were not using services because they did not know they were
available, or they did not know how to access them.
The Western Maryland, Eastern Shore, and Southern Maryland
sites targeted families in rural areas. These sites collaborate
with other community agencies and help to connect families to
services.
Here in Baltimore City, we focused on outreach to African
American families. This funding helped our chapter to establish
three support groups targeted to African American caregivers,
and it has resulted in increased participation of African
American families in our services.
The Maryland Alzheimer's demonstration grant has had a
significant impact on the availability of services for
caregiving families, and it essentially built the capacity of
the Alzheimer's Association chapters to serve more people more
effectively. It enabled the chapters to offer respite care
subsidies to give families time off from caregiving. It
increased the number of caregiver education programs to inform
caregivers about the disease and how to access community
resources. It provided for training of assisted living, nursing
facility, home health agency and adult daycare staff to enhance
the quality of care for people with Alzheimer's. It also helped
the chapters train physicians and health care professionals in
community clinics to encourage early diagnosis and intervention
with treatments and services. Finally, it promoted
collaboration among Alzheimer's Association chapters and public
agencies to better coordinate care throughout Maryland.
The Alzheimer's Association is currently participating in
the Alzheimer's grant program through the Maryland Department
of Aging, and Secretary Ward is here with us today. This
program has two sites in the State in areas with limited
caregiver services--the Eastern Shore and Southern Maryland.
The funding has established a consumer-directed respite program
for family caregivers. It is also strengthening the skills of
health care providers through dementia training, and it is
encouraging the development of new services by offering
training to entrepreneurs on how to start and manage respite
care services.
Senator Mikulski, speaking on behalf of the Alzheimer's
Association and the 85,000 Marylanders with Alzheimer's and
their fami
[[Page 10]]
lies, I applaud your efforts to expand these programs through
the Alzheimer's Disease Research and Caregiver Act. This bill
will help to continue to ensure that no family faces this
illness alone by providing essential accessible services and
hope for the future.
Thank you.
[The prepared statement of Ms. Naugle may be found in
additional material.]
Senator Mikulski. Thank you very much for your testimony
and for your advocacy.
I am going to talk about the Alzheimer's Association in a
minute, but I want to acknowledge that Sue Ward is here. Sue is
the head of the Maryland Department of Aging, and all of us who
have been involved in issues and services on aging really think
she has been doing an outstanding job.
Sue Vaeth runs the Alzheimer's Demonstration Program in
Maryland, and she has submitted testimony for the record.
[The prepared statement of Ms. Vaeth may be found in
additional material.]
Senator Mikulski. Sue Ward, I am not trying to put you on
the spot, but as administrator of the program and the one who
is handling so many of the information and referral calls, did
you want to say anything or add anything?
Ms. Ward. I believe that Ms. Naugle has said it all. The
demonstration grant is very exciting for all of us, and we are
all very pleased to be a part of it and certainly thank you on
behalf of a variety of organizations.
Senator Mikulski. Sue, I am going to ask you to join the
witnesses at the table for when I ask the questions about the
family--and again, I am not trying to put you on the spot--and
you know I cannot put you on the spot. But when we speak of
Alzheimer's as a disease, it does not exist in the vapors; it
exists in the person, and it exists in the family and in the
community. So when we are looking at the issues, again we are
going to come to the research on treatment, but one of the
biggest issues is those who have it now. Alzheimer's affects
first the person who has it, the family who cares for the
person who has it--it can be a spouse, it can be a parent--and
it also affects the community.
When we find the cure--and I believe that one day, we
will--we will be able to reduce nursing home admissions and
significantly reduce the costs to both families and the
taxpayers.
So I am going to focus now on the family issues, and the
reason, Sue, that I asked you to come up is because you
administer the Department of Aging, and one of the big issues
is information and referral as well as caregiving.
Mr. Savage, let me turn to you for a moment. You talked
about Social Security being ``the villain.'' Could you
elaborate on, first of all, the ability to find a caregiver and
compatibility with your wife? These are all really very
difficult issues, but Social Security should be an easy process
for you. It is one thing that we should have literally in
control--when so many things with Alzheimer's are out of our
control.
Mr. Savage. Well, it starts with you have to take a number,
and you have to wait in line, and the person with Alzheimer's
has to be there, because if anything has to be signed or
approved, my wife
[[Page 11]]
has to be there to sign an ``X'' so that somebody can witness
it; she cannot use a stamp.
Senator Mikulski. Why were you turning to Social Security?
Was it to apply for Social Security?
Mr. Savage. It was to apply for disability, and the
question was whether she had enough quarters to qualify for
disability. And that has become a very contentious issue which
is going to have to go through an appeal for which I will have
to hire a lawyer to solve the problem.
I do not know how much you want to hear about this.
Senator Mikulski. Well, actually, I will want to hear more
about it in a more private setting, respecting your family--but
what I find troubling is not only the waiting time--that is a
management issue--but let us go to the ability to sign papers,
apply, et cetera. I have a power-of-attorney, I have a medical
power-of-attorney; you try to plan and do the right thing.
Mr. Savage. They do not accept that.
Senator Mikulski. Do you have the power-of-attorney for
your wife?
Mr. Savage. I have power-of-attorney which was issued to
me, and I had to bring my wife to sign everything and approve
everything because they would not accept it.
Senator Mikulski. This is really very troubling. In my
family, my mother was the executor of my father's affairs, and
I was kind of the administrative executive assistant to back
them up. My father was already on Social Security, so we did
not have to grapple with this. But this is a very troubling
issue that you have raised.
So your wife had to sign even though----
Mr. Savage. She had to sign an ``X''; she could not use a
stamp which we have. She cannot use that.
Senator Mikulski. She cannot spell her name?
Mr. Savage. She cannot write in the right slot, or legibly,
so we now have a stamp which we had made for her so she can
stamp things in somebody's presence--a check or whatever. So
the caregiver can go to the store, and she can stamp the check,
and everybody knows about it, so it is not unusual. But with
Social Security, she has to sign an ``X'' in the presence of
somebody from Social Security, so she has to be there, and it
has to be explained to her, and that is complicated, especially
after we have had a long wait, and she is getting antsy and
impatient and wants to go to the bathroom. It gets to be a
complicated issue.
Senator Mikulski. I understand, and I find this very, very
troubling. I want to assure you right now that first of all,
when this hearing concludes, I am going to ask my staff to
contact you and, in the appropriate private setting, we want to
go over this, one, to see if we cannot help you get it
straightened out as a constituent service, and second, if we
can, I want to fully understand what you have been through as a
case example for me to get into this with Social Security--and
I am going to get into it with Social Security.
Mr. Savage. Thank you.
Senator Mikulski. You are a man of great experience, you
are a well-educated man, you have financial resources, and you
are a paperwork guy so you know how to organize yourself. I
would say that 65 percent of the American people do not even
know about
[[Page 12]]
power-of-attorney and many of these other things. So we want to
help you and then, in helping you, in helping the one, we want
to be able to help the many.
Mr. Savage. I think the many are very important. And it is
not that they were uncivil to me. They were usually civil, but
they are not too quick in some cases. Just being able to pull
things up on a screen--they could pull it up one time, but they
could not pull it up the next time--so just getting to the
records and giving you the information that you need to defend
your own position was impossible.
Senator Mikulski. But you know, the best advocate for the
person is the family, and if the family has established the
legal right to speak for the individual, you should be able to
act on your wife's behalf to be able to do the appropriate
things to get her the things to which she is entitled. That is
where I am coming in, and I will come back to you.
Cass, tell me about the Alzheimer's Association. Tell me
what the Alzheimer's Association does. I think I know, but I
would like to hear from you. And then, as executive director,
what do people come to you the most about?
Ms. Naugle. The Alzheimer's Association was created to fill
in the information gaps and service gaps that families had.
Back in 1980, families were essentially on their own; they had
their doctor, but often they did not know very much about the
illness; and they had nursing homes. Between that, the family
took care of the care of the person without really too much
support.
So the Alzheimer's Association provides a help line that
gives families information about the illness, about access to
community resources, or anything that they need like support or
anything over the phone. We provide respite care, because many
of the services that people with Alzheimer's need are not
covered by insurance or Medicare.
We have a program called the Safe Return program, because
many people with Alzheimer's can wander and become lost.
Senator Mikulski. Yes, we have been a supporter of that
program with you.
Ms. Naugle. Yes. So we provide this program. We provide a
lot of caregiver education and training to health professionals
who provide care and also, of course, support groups throughout
the whole State. Some are for people in the early stages, which
is how Peter and Ina got involved with the Association. We have
support groups just for spouses; we even have a group for
Catholic nuns.
Senator Mikulski. And those are Catholic nuns who volunteer
to do research, the famous brain study.
Ms. Naugle. Yes. So when people call the Association, it is
for any variety of reasons. Usually it is, ``My family member
is starting to act funny; what do I do about that?'' And then,
after they get the diagnosis, it is, ``Where do I go from
here?'' and we connect the families to services.
Senator Mikulski. Where do you send them for diagnosis?
Ms. Naugle. We have a listing of health care facilities
that we know do a good workup and have a good understanding.
Senator Mikulski. And they have an excellent geriatric
evaluation program here.
[[Page 13]]
Do you also use the Veterans Administration for older
males, usually World War II veterans, and so on?
Ms. Naugle. Yes. We have a wonderful connection with the
Dementia Clinic that they offer at the VA in Baltimore.
Senator Mikulski. After you explain the services--first of
all, you do a good job, and I will come to Sue on that--what is
the biggest surprise for families and that often adds to their
sorrow--because this disease produces grief. As one loses
cognitive ability, there is also the loss of the relationship,
the loss of income. There is a lot of grief in this; am I
correct?
Ms. Naugle. Absolutely.
Senator Mikulski. So there is the sorrow factor and, in the
caregivers, even depression. But from the standpoint of public
policy or public resources, what is often their biggest shock
and biggest disappointment?
Ms. Naugle. Their biggest surprise is that Medicare does
not cover the services that they need, or they may have had a
high option Blue Cross and Blue Shield for their whole life,
but they find that that does not cover adult daycare or someone
to help them in the home.
So when families realize that most of those expenses are
out-of-pocket, that is a big shock to them.
Senator Mikulski. So issues like adult daycare, long-term
care and even nursing home care; the big shock is that Medicare
is not going to pay for it and that they will have to pay for
it, as well as what we would call housekeeping services in the
home to help--the kind of folks that Mr. Savage was talking
about.
Mr. Savage. It is even a tax deductibility issue. They are
very strict as to what you can and cannot deduct; you have to
be careful and look at the code pretty carefully. It is a real
question.
Senator Mikulski. Sue, as you run the Department of Aging,
and you try to create a caregiver program and an information
referral program, what are people coming to you for? When I say
``you,'' I mean the Department of Aging and those that are in
every county in the State. People do not realize that the
Department of Aging is really the primary source of funds,
along with local government, of the senior centers, which is
usually the gateway for many people.
Ms. Ward. Thank you, Senator, for inviting me to
participate. We have submitted written testimony.
Primarily, I think people come in order to get information
about resources. As you know, 80 percent or more of the care
that is provided to frail older people in the country is
provided by the family, and most people can function, as Mr.
Savage has, if they know where to go and what to do and receive
some help.
In my own family case, I have a grandmother, an aunt and a
mother all of whom were demented. She was not eligible for
Social Security at all, but it was the reverse mortgage that
was my surprise, just for your information, because she could
not apply and we had wanted to get a reverse mortgage to
provide her care in her home as long as we could.
Back to the question that you asked me, yes, they come
primarily for information about resources. Obviously, the
Alzheimer's Association is the primary resource for all of us
to use----
[[Page 14]]
Senator Mikulski. Do you contract with them?
Ms. Ward. Yes, and in fact this latest demonstration grant
is a joint venture. I think Cass got the earlier grant, and
then we received this grant, and then we contracted with the
Alzheimer's Association for part of that, as well as the area
agencies. What we are trying to do, as Cass said, is develop
more caregivers in rural areas where there are not the
resources that people need to develop micro-enterprises to help
people who have never necessarily thought of doing this to
provide the care in the home as long as possible, and then to
provide the respite services that are necessary for the family.
And these providers can be family members.
Senator Mikulski. In addition to the issue of a work force
in the area of caregiving--because you need not only
competency, which is skill-based, but the person has to truly
be honest and reliable because of the vulnerability of the
population----
Mr. Savage. They have to have judgment.
Ms. Ward. Yes.
Senator Mikulski [continuing]. Exactly--and also
compassion. I mean, this is not like being a cafeteria worker
where getting folks through the line is fine; this takes a lot
of very tender, loving care, again with a very vulnerable
population.
The federal government provides you with money for
information and referral. Is the federal government doing
enough to help you help the others?
Ms. Ward. We would obviously like more staff in information
and assistance, which is what we call it, because in addition
to providing information, we try to help walk people through
the process.
Senator Mikulski. And it is very time-consuming.
Ms. Ward. Yes.
Senator Mikulski. And very difficult. People tell their
stories anecdotally. They do not call and say, ``I want to know
the resources and the regulatory framework for my spouse'' or a
parent; they will usually say, ``My father is really not
himself. Mother is doing the best she can,'' and then go on
with their story. Am I correct?
Ms. Ward. Absolutely. I think ``Father is acting funny'' is
one of the primary explanations that people have for calling.
Senator Mikulski. But do you think we have adequate
services?
Ms. Ward. Absolutely not--and I think Maryland does very
well.
Senator Mikulski. Where do you think the big service
deficits are--and then I would like Cass and Peter to talk
about it. What do you think are the service area deficits?
Ms. Ward. Primarily, I think the amount of service is a
problem, but also geographic areas. One reason we are
concentrating on the rural areas is because if we think about
the work force shortage generally in caregiving, rural areas
are severely strapped in having people who are willing and able
to do this, who can get the training to do this, and who have
even thought of doing it. Many people who might want to start a
business think of computers or crafts or something else.
Caregiving is not necessarily something they think of, but a
lot of these people are very experienced in caregiving. They
have been doing this all their lives. And the opportunity to
continue to do it and to get a little remuneration for it is
extremely important, we feel.
[[Page 15]]
Senator Mikulski. I want to switch gears now to the
research. Peter, is Ina involved in a clinical trial?
Ms. Savage. No. She is taking one medicine now which she
would have to stop to involve herself in some of these tests.
But through Dr. Lyketsos and Dr. Kawas and others, every time
something has come along, we have tried to involve her.
Senator Mikulski. But how did you hear about the clinical
trials?
Mr. Savage. Basically, when Ina was diagnosed at Shepherd
Pratt, when we were then referred over to Dr. Kawas, he was
engaged in several of the studies, so they quickly looked at
her to see if she might fall into this one or might fall into
that, might fall into the other. I was immediately engaged; I
am a baseline study for God knows how many studies at the
moment, so that any time something new comes along, including
the recent vaccination, we try to get around to gatekeepers and
get into a study. So through those contacts, we have been able
to know what is going on.
Senator Mikulski. What gatekeepers?
Mr. Savage. For example, a company that was doing the
vaccinations had 365 people in the total sample, and 25 percent
of them were going to be given a placebo. I was trying to just
get my wife to be considered for the study.
Senator Mikulski. I am going to ask you a tough love
question, because you are obviously a real fighter for your
wife, and God bless you.
Mr. Savage. Yes.
Senator Mikulski. You are a real fighter--and thank you,
Mrs. Savage.
Then, I am going to ask about this also when we turn to our
scientists. But you want to get anything you can to help her,
which therefore means even circumventing the protocol; am I
correct?
Mr. Savage. You are absolutely right. What does it hurt?
Senator Mikulski. We will come back to the protocol. But
what it also brings up is your gateway to new knowledge or new
resources and so on was because you got to the right area for
geriatric evaluation. And again in my father's case, here at
Bayview, there was a complete physical, a complete
neurological, and a complete psychological, so we would then
know if his medications were wrong and that was affecting his
memory, or whatever. That then brought us to the team approach
which is one of the signatures of the Mason Lord effort here.
But whether you are in a rural area or not, the whole
ability to get there is an issue. But it seems to be that the
quality of the information is the trigger; am I right, Ms.
Naugle?
Ms. Naugle. Absolutely, just getting the information out to
families. We try through every way possible, through the
telephone, and we have a website where we have research
opportunities that families can explore.
Mr. Savage. I would also say that Dr. Kawas was excellent
at using my wife as the poster girl for Alzheimer's for a
while, because she was at one time quite articulate in a couple
of languages, so she has appeared at board meetings where we
have been trying to raise funds, and she has appeared in
Baltimore Sun articles, and she has been in National
Geographic, and she has been on an hour-
[[Page 16]]
long program in Brazil, where it is really an unknown disease
in rural areas, and she appeared on ``Good Morning America.''
All of that then drew information to us, because people
discovered that we had a problem, and therefore, people would
ask, ``Have you tried this?'' and we would go and look at that
and then check it with Shepherd Pratt or with the Neurological
Center here at Bayview to see if it checked out into anything
which was responsible and which we should pursue.
So I used all of those resources. Every time I would take
an exam, I would get somebody's telephone number, and if I
would hear something, I would call them.
Senator Mikulski. God bless you. What really emerges is
that, first of all, what is absolutely needed from a public
policy perspective--and we are going to go to the research in a
few minutes--but first of all, we really need people who are
trained in this field. This subcommittee held a hearing last
year on the shortage of geriatricians, people who are the
primary medical caregivers, if you will, of older people, or
who train people as to the adequate diagnosis, and then the
ability to pay for that diagnosis.
Then, there is the training of primary care physicians to
be able to detect the signs of Alzheimer's to get patients
diagnosed--because there could be any reason for symptoms--if
you have had recent surgery, and you are on medications, you
are going to be bewildered and have a memory loss or a memory
deficit, but that is going to come back in a matter of weeks.
Then, there is this issue of what Medicare pays for and
Social Security; Medicare is a big factor in a family's lives,
because there is a family expectation that Medicare is going to
pay for this--am I right--and then information and referral.
Mr. Savage. Yes.
Ms. Naugle. Yes.
Senator Mikulski. So we have a lot of work to do. When we
hold our hearing on caregiving, I would like you to be able to
come, because we are going to be talking about the States, and
I would like you to be able to come, Sue, to talk about that
area.
Ms. Ward. Thank you, Senator.
Senator Mikulski. We could spend our whole hearing on the
issue of caregiving.
The movie ``Iris'' for which one of the actors won an
Academy Award tells the story of Iris Murdoch, one of the great
writers of the 20th century, and a brilliant linguist, who
herself moves to Alzheimer's. It is about the devotion of a
husband, her own spunkiness and so on, and I think this movie
is going to raise awareness.
This is tough to face. The first thing is for families to
face it, then to get the help they need, and then to make sure
that government is on their side and is not adding to their
hardship. And while government is trying to help with services,
government has to help with the resources.
We are going to go on to the research, but before we do, is
there anything else you would like to sum up for me to take
back to my colleagues on what we should think about or what we
should do?
Peter.
Mr. Savage. Well, my wife is young and therefore does not
qualify for Social Security generally because she is only 60
years old.
[[Page 17]]
So that is a problem for younger people who face this issue,
and it is more complicated. It is not just an issue of Social
Security; it is an issue of what kind of support is available
for somebody who does not fit a usual pattern.
And I must say there are resources, and it is wonderful
that there are resources, but some of them are not financial
resources--it is your own imagination or somehow getting around
the problems--and all of that has a cost. I guess I am blessed
in that I can shoulder some of these responsibilities, but it
would be nice to have some help.
Senator Mikulski. Certainly. Good for you.
Cass.
Ms. Naugle. Again, Maryland has benefitted so much from the
Federal funding that we have received to expand services, and
it would be wonderful to be able to expand that to all the
States in the country so there would be the same level of
service for someone who lives here but is caring for someone in
Minnesota.
Senator Mikulski. So essentially take the programs
nationwide instead of just demonstration programs--because
every State is different; for our colleagues in the West, the
geography makes a difference, the culture of the community, et
cetera. I think that is excellent, and it is a goal of mine.
Again, thank you for what you are doing.
Sue.
Ms. Ward. I think there is one other thing that we have not
really considered but came to mind today because of something
that Mr. Savage was saying. That is that in addition to the
caregiving needs, the descendants of people who have
Alzheimer's always have a worry--for me, it is a grandmother,
an aunt, and a mother, so my children and I are already
preparing for the possibility of my developing dementia as
well. But that is something that we do not think of in the
policy setting. We provide support groups, but do we really
deal with that issue. I would like to see us include, at least
in Maryland, something in the caregiving nature for helping
that innate fear that descendants may have.
Senator Mikulski. That is part of the research, too, on
genetic proclivity.
This has been excellent, and I want to say God bless you
for your excellent advocacy, whether it is the family,
community, or government. We really appreciate it.
Ms. Ward. Thank you, Senator, for your advocacy.
Ms. Naugle. Thank you, Senator.
Mr. Savage. Thank you.
Senator Mikulski. Let us hear from the ``genius club'' now
and see what they want to tell us. We want research, we want
magic solutions, and we want them now.
We have two outstanding scientists with us today. Dr. Judy
Salerno is Deputy Director of the National Institute on Aging.
We need to recognize that the National Institutes of Health are
located in Bethesda, MD, but this is a very unique campus in
the sense that the National Institute on Aging is right here at
Bayview. It is the lead Federal agency for Alzheimer's, and Dr.
Salerno is an experienced researcher and an expert on geriatric
care, and will tell us about her work. She has also served at
the Department of
[[Page 18]]
Veterans Affairs, and I am the appropriator for the Veterans
Administration, so I would even welcome your advice and
insights on where we could also be using another Federal agency
for breakthroughs.
Dr. Salerno has her M.D. and her master's of science in
health policy from Harvard, and we want to welcome her.
Dr. Lyketsos, we also want to welcome you. Dr. Lyketsos is
an associate professor of psychiatry at Johns Hopkins and is
director of the Johns Hopkins Neuropsychiatry Service and
Course Director for an ongoing series of continuing medical
education programs on Alzheimer's dementia and care of the
aging. He is the Baltimore site director of the Alzheimer's
anti-inflammatory patient trial and is a principal investigator
in many areas. We have been able to attract such outstanding
researchers. And again, you have been a very strong advocate.
Dr. Salerno, I am going to ask you to please present your
testimony now.
STATEMENT OF JUDITH A. SALERNO, M.D., DEPUTY DIRECTOR, NATIONAL
INSTITUTE ON AGING, NATIONAL INSTITUTES OF HEALTH
Dr. Salerno. Thank you, Senator, and thank you for inviting
me to appear before you today to discuss Alzheimer's disease,
an issue of considerable importance to every, single one of us.
As a geriatrician and a physician specializing in the care
of older persons, I would like to particularly thank Mr. Savage
for sharing his story and reminding us of the human toll of
this devastating disease.
I first began as a clinical researcher at the intramural
program at NIA in 1988. At that time, we rarely considered
prevention or cure of Alzheimer's. A little more than a decade
later, prevention and cure are the bywords of our research
initiative.
We have been able to identify a number of risk factors,
both genetic and possible lifestyle factors, and are on the
threshold of using powerful brain imaging techniques to help us
improve our ability to diagnose Alzheimer's in its early
stages.
But most importantly, we are making significant advances
toward effectively treating and hopefully even preventing
Alzheimer's disease. NIA is currently supporting 18 clinical
trials, seven of which are prevention trials. These trials are
testing agents such as estrogen, anti-inflammatory, anti-
oxidant agents for their effects on slowing the progress of
disease or preventing it altogether.
We have recently initiated several clinical trials that
build upon findings that focus on possible links between
vascular disease and Alzheimer's. For example, as you
mentioned, it has been widely reported that high blood levels
of homocysteine, an amino acid commonly found in the blood and
already considered a risk factor for cardiovascular disease, is
associated with an increased risk of Alzheimer's. This is of
great interest since blood homocysteine levels can be reduced
by increasing intake of foliate, Vitamins B6 and B12.
So we are supporting a clinical trial at NIH to look at the
effects of supplementation on cognition in healthy men and
women.
[[Page 19]]
Other studies have indicated that the use of statins, the
most commonly used cholesterol-lowering drug, may decrease the
risk of developing Alzheimer's as well. A trial testing whether
statins can slow the rate of progression in Alzheimer's is
being launched this year.
The Alzheimer's patient, we have come to realize--and we
heard so eloquently discussed this morning--it is not only the
patient with the disease, but the entire family unit. Most
Americans with Alzheimer's disease are cared for at home by a
relative, a spouse, an adult child, an in-law, or a friend.
In addition to the financial burdens this imposes,
caregivers frequently experience significant emotional stress
and physical strain and often do not receive the support they
deserve. Caregiving, as we know, is a 24-hour-a-day, 7-day-a-
week job. NIA has invested in REACH, a large, multi-site
clinical trial to examine ways we can strengthen caregivers'
ability and capacity to care for their loved ones. It is
designed to help show us what works and at what cost.
Another critical component of our research is translating
basic science findings into clinical interventions. A very
promising strategy has been the development of the vaccine
approach to preventing or reversing the formation of amyloid
plaques on the brain, amyloid plaques being the characteristic
lesion of Alzheimer's disease. Human trials of an Alzheimer's
disease vaccine were conducted by the Elan Corporation and not
funded by NIH, but were halted earlier this year when a number
of patients developed brain inflammation.
Despite this outcome, the science on which the study was
based continues to be a foundation for building safer
strategies for arresting the progression of Alzheimer's.
We have recently funded studies in conjunction with the
Neurologic Institute to better understand the science
underlying the vaccine approach. Fifteen years ago, we were in
the dark about so many things we now understand about the
biology and the genetics of Alzheimer's. Ten years ago, we
could not model the disease in animals. But today, as you saw
on your tour, we have transgenic mice who have been an
invaluable tool for modeling Alzheimer's amyloid plaque
development in the brain and for testing new therapies.
Five years ago, prevention of Alzheimer's was a distant
view. Now we have seven major clinical trials for prevention of
this disease. It is difficult to know with certainty how the
Alzheimer's story will turn out, but the pace of discovery and
the progress we have made in recent years has been
breathtaking. Our continued investment in Alzheimer's research
will help us sustain the pace and advance our knowledge of safe
and effective treatments and prevention strategies that really
work.
Thank you, Senator, for this opportunity to appear and
report our progress.
[The prepared statement of Dr. Salerno may be found in
additional material.]
Senator Mikulski. Thank you. We will come back and ask you
some questions, but thank you.
Dr. Lyketsos.
[[Page 20]]
STATEMENT OF CONSTANTINE G. LYKETSOS, M.D., PROFESSOR, JOHNS
HOPKINS UNIVERSITY SCHOOL OF MEDICINE, BALTIMORE, MD, ON BEHALF
OF THE ALZHEIMER'S ASSOCIATION
Dr. Lyketsos. Senator, good morning. I want to thank you
for this very important hearing and for inviting me to testify
and also for your staunch advocacy of the Alzheimer's cause.
I also want to acknowledge the Alzheimer's Association and
second what you have said about them, as well as the NIA for
providing the leadership in the research effort.
I also want to acknowledge several of my staff in the room
from our clinical and research team who have taken the time to
come today. They are the true workers on the research effort.
I speak to you as a scientist and as a doctor who has taken
care of many thousands of Alzheimer's patients, but I also have
been touched personally by Alzheimer's in that my wife's
grandmother suffered quite horribly from this disease, as I
know many others in this room have been affected.
You do make the point that we all support research as
critical to the cure and prevention of Alzheimer's. Research is
also critical to improving the lives of the 4 million victims
currently. I want to remind you, as I am sure you know, that we
lead, and the U.S. affects countless others with Alzheimer's
around the world who are emulating what we do here, so there is
a broader impact of this research.
I strongly endorse the bill that you have submitted, the
2000 Alzheimer's Disease Research, Prevention, and Care Act,
and while I am delighted to hear about the $1 billion increase
of NIA funds in general----
Senator Mikulski. Now, we reached $1 billion--we did not
add $1 billion. That is phase two.
Dr. Lyketsos. I realize that, and that is where I wanted to
go--hoping that the $1 billion in a few years will be dedicated
to Alzheimer's research more specifically.
Now, as a Hopkins professor, I want to point out that we
are proud to be at the forefront of research and care. Our
Memory Disorders Program for the care of patients with
Alzheimer's, one of the first ever established in the United
States, currently spans all the Hopkins institutions, both here
at Bayview, at Hopkins Hospital, and at our affiliate at Copper
Ridge. We have developed and provide not only diagnostic
evaluations but ongoing care from diagnosis to the end of life
for many thousands of people with Alzheimer's. I want to
emphasize that already what we do in the care of patients makes
a huge difference.
But we are here to discuss research, and research in this
area is hard to summarize. In my written testimony, I have gone
into greater detail, and I am going to skip ahead to talk a
little bit about what I see as the critical issues in treatment
research.
The most exciting possibility there that I want to
illustrate relates to the possibility of preventing Alzheimer's
that Dr. Salerno has already spoken about. This hinges
primarily on the recognition that Alzheimer's is damaging the
brain for many years--maybe decades--before it actually causes
symptoms. An estimate has shown that if we can intervene during
that time period, and if we
[[Page 21]]
can reduce or delay the onset of symptoms by 5 years, we would
reduce the number of cases by half, which is a substantial
impact. Therefore, NIA has initiated this effort.
Our team at Hopkins is involved in three of the seven
studies that Dr. Salerno mentioned, and the one that we are
furthest ahead with right now and I want to talk a little bit
about is the ADAP study, which is the Alzheimer's Disease Anti-
Inflammatory Prevention Study. Many of the staff members who
are doing the work in this study are in the room.
This study tries to recruit people 70 and older who are
healthy seniors who have a first-degree relative with
Alzheimer's. We already have at six sites around the country--
600 people. We have 120 here in town who are already enrolled
in the study, and we have had great help from Secretary Ward
and from the Alzheimer's Association in this recruitment
effort.
But I want to make the point that we need to eventually get
2,400 participants, and given that we are talking about healthy
seniors, one of the major efforts that we are hoping to get
help with is the education of seniors about the availability of
these research studies and the encouragement for them to
participate. It is hard to encourage seniors to participate in
these studies. The studies are expensive. I am sure you hear
that a lot. It is expensive to do the research. But these sorts
of studies take several years, many clinicians, and thousands
of participants to give us answers about just a simple drug or
two drugs, as we are looking at in ADAP.
In addition to prevention studies, I want to emphasize
other treatment studies. Drug discovery in particular, which
these days is more of a collaboration between industry and the
academic world, needs to be supported because that is
ultimately what is going to bring us the cure.
We also need to spend more time on the treatment of the
noncognitive symptoms of Alzheimer's. We have shown through our
research that as many as 90 percent of people with the disease
develop what are sometimes referred to as ``psychiatric
symptoms,'' which are very debilitating, including depression,
delusions, hallucinations, and the like.
Senator Mikulski. Is this prior to the onset?
Dr. Lyketsos. No. This is after the onset. Through the
course of the 10-year illness, 90 percent develop these
symptoms. And research into how to treat those symptoms is
really in its infancy. We have been doing a lot of it in my
group, but I want to emphasize the importance of supporting
that research further.
We also do not want to limit ourselves to medication
therapies. We are very interested in our group in non-
medication treatments for the patients as well as for the
caregivers. Just to give you a few examples, we are working now
with an exercise intervention to see if, through somewhat
aggressive exercise treatment, we can reduce the progression of
Alzheimer's disease. That study is funded by the Alzheimer's
Association.
We are also developing and researching a distance learning
educational program to see whether we can train personal care
workers through a CD-ROM interactive program in how to take
care of people with Alzheimer's.
[[Page 22]]
So research in those areas will hopefully improve the
ability of people to give care day-to-day.
Finally, there is the issue of delivering treatments where
they need to be given. You have mentioned this morning the
nursing home environment. We know that perhaps as many as 50 or
60 percent of people in nursing homes have Alzheimer's, but we
also have not known as much about the assisted living
environment. My group is doing the Maryland Assisted Living
Study funded by NIMH, the National Institute of Mental Health,
and in our first early findings, we are discovering that as
many as two-thirds of assisted living residents might suffer
from Alzheimer's and that they are not receiving the sort of
care that we would want them to receive. So improving the
ability to deliver these treatments that already exist and the
new ones that come out in these environments where millions of
people with Alzheimer's live is an important mission.
I want to summarize by expressing my deep appreciation for
your inviting me to speak. We do know that this disease affects
all of us personally, and there is a whole range of treatment
and other research that is eventually going to need $1 billion
a year hopefully to bring it forward.
Thank you.
[The prepared statement of Dr. Lyketsos may be found in
additional material.]
Senator Mikulski. Thank you very much for that outstanding
testimony, but most of all for the work and the devotion that
each of you have spoken with. Obviously, you are deeply
involved in thinking about the lives of people with
Alzheimer's, their activities of daily living, and their
interactions with the people whom they love and who love them
and, again, this great loss.
You have been kind enough to mention the bill that I have
introduced with Senator Kennedy and others. I was concerned
that there needed to be a real focus on Alzheimer's research in
the authorizing. Our colleagues on the Appropriation Committee
which actually puts money in the federal checkbook are very
good, but we developed this legislation called the Alzheimer's
Disease Research, Prevention and Care Act. It focuses on
prevention and authorizes research on caregiving, which is an
area that is often not focused on, plus it is hard to measure,
hard to evaluate, and so on, as well as keeping those
demonstration projects going. And we do authorize the National
Institute on Aging at $1.5 billion, so I anticipated what you
would be asking.
Let me now go to my questions. First of all, you
acknowledged the people in the room who are your researchers. I
think we should ask them to stand up and give them a round of
applause.
[Applause.]
Senator Mikulski. We are glad to see all of you.
Cass, do you have people with you from the Alzheimer's
Association, the families and the advocates?
Ms. Naugle. Yes.
Senator Mikulski. Let us give them a round of applause as
well.
[Applause.]
Senator Mikulski. Very good, very good. This is very
dynamic.
[[Page 23]]
I want to ask some questions now. When we talk about
prevention, Dr. Salerno--and seven of the clinical trials are
here--not only what advice would you give to us in terms of
funding the research, but what advice would you give families
now in terms of just general prevention? Do you think it is
diet, exercise?
Dr. Salerno. I think we are on the threshold of
understanding those issues, but as far as practical
information, as we talked about before, increasing foliate in
your diet certainly does not hurt, and exercise leading to
understanding and prevention of associated diseases like
hypertension and diabetes. We have a lot of information about
that, and the interplay of those factors is something that we
are just beginning to understand.
Senator Mikulski. Let me ask about that, because it goes to
something that Mr. Savage identified, which is how do you get
the medical treatment for someone who has Alzheimer's. We think
of someone who might be 72 years old, and they have Alzheimer's
and diabetes and are insulin-dependent--no neuropathy signs,
but they have to take insulin--this is a difficult patient
management issue, first of all in terms of just remembering to
take your insulin, to keep track, to do the blood work and so
on. Where do people turn, and what kind of research is actually
going on to be able to deal with these issues?
Dr. Lyketsos. I think you have hit upon a critical point.
The Alzheimer's patient rarely has just Alzheimer's, and it
might be diabetes, it might be heart disease or hypertension;
on average, there are two or three other conditions for the
typical patient.
Here in Baltimore, where I am fairly familiar with the
scene, the groups such as ours at Hopkins Bayview that
specialize in this area are overwhelmed by referrals because
there is very little training and availability elsewhere.
Senator Mikulski. Who is referring?
Dr. Lyketsos. Lots of sources--the Alzheimer's Association;
the families hear about us from word-of-mouth; the NIA; our
colleagues in primary care with whom we have worked over the
years. We are typically backed up several months because we do
not have the staff to handle the kind of need that is out
there. We have been trying to grow the programs very slowly
around town, but there are not many clinicians who are
interested in going into this area. It does not pay as much; it
is hard work; there is a lot of after-hours work, and it is
frankly very difficult to take care of people with terminal
illnesses who are declining for many years.
Senator Mikulski. You bring up some very important points.
Number one, I am just appalled at the really skimpy
reimbursement to primary care physicians taking Medicare
patients--just Medicare patients. When you add to that the
complexity--first of all, the older you are, you usually have
more things that you are coping with, you have more drugs that
you are dealing with, and these are important tools for
survival. Yet that physician out there, whether it is in
Highlandtown or Locust Point or Timonium or Bel Air or Bethesda
or wherever, is listening to the patient--first of all, you
have to really listen--and then, you are managing multiple
diseases and multiple drugs. If you then add a memory loss
issue, and if that person does not have a competent caregiver,
that even compounds it.
[[Page 24]]
So I think one of our issues is that you cannot be an
expert everywhere. There are just not enough of you. Just like
there are not enough geriatricians to do this--but the teaching
of those involved in internal medicine who, demographically
have large populations of the elderly--I think we need to
reimburse them so they will have the time to listen and
practice the medicine they want to do. Then you all essentially
train the physicians so they can do broader-based care.
Is that really a very important public policy?
Dr. Lyketsos. I think it is. I would want to follow up and
go back to something you said earlier, that it is really a team
that we need to reimburse. There is a physician, but there is
often a nurse, a social worker, an occupational therapist--many
times, there is a broader team.
Senator Mikulski. Or a nutritionist.
Dr. Lyketsos. Or a nutritionist. It is a team care
approach, and Medicare really limits who it will pay for
Alzheimer's-related services.
Senator Mikulski. Dr. Salerno.
Dr. Salerno. I would add that we have to ``gerontologize''
all of the health professions, that we are never going to have
enough people with a specialty in this area, and that we really
have to give them the tools to be able to care for a broader
range of folks. It really is very much absent in the training
of most health professionals, and we need to do more to provide
the training and the tools.
Senator Mikulski. So that while we are doing research, we
really have to put emphasis on training and the training of
all--what was the phrase you used?
Dr. Salerno. ``Gerontologize.''
Senator Mikulski. Gerontologize. If you can say it, we
ought to be able to fund it. [Laughter.] So you are saying
across the board in all other training--because somewhere along
the line we are all going to get old; that is part of the
predictable behavior.
Let me come back to research. Dr. Salerno, what areas of
research do you think show the most promise?
Dr. Salerno. I certainly think that we have shifted into
the prevention mode, and I think that understanding the disease
and the underlying pathology has given us great opportunities
to look for drugs that work, and knowing the mechanisms, we can
see where along the line we can intervene, whether it be in the
amyloid plaque production and also in nonpharmaceutical
approaches, as we heard a few minutes ago.
I think that prevention is really the key now and looking
at the disease much earlier than we used to, and that is the
progression from a normal, cognitively healthy person to those
whom we call mild cognitively impaired to see who will go on to
develop Alzheimer's disease--looking at the entire spectrum as
we go through that.
Senator Mikulski. So early detection----
Dr. Salerno. Absolutely.
Senator Mikulski [continuing]. Which really comes from
early observation, it goes to making gerontology part of the
basic train
[[Page 25]]
ing, if you will, of internal medicine and so on, where they
begin to see the early signs.
Dr. Salerno. And then we can intervene earlier and perhaps
delay that onset or stop it altogether, and that is really the
promise of the research that we are doing now.
Senator Mikulski. Let me ask you about complementary
medicine. I notice in the seven trials that, in addition to
estrogen and so on, you are looking at ginkgo biloba, which you
see advertised in every vitamin store that it will help you
with your memory.
You need to know that I am a believer in the field of
complementary medicine, but I also want to protect my
constituents from quackery. That is why I joined with Senator
Tom Harkin to establish an Office on Complementary and
Alternative Medicine at NIH to be able to do the research.
When people are desperate, they will go anywhere and do
anything, from wearing copper bracelets to putting garlic on
their earrings. I do not want to trivialize the field, but
there are legitimate complementary modalities--and I am glad
you are doing this research--as well as those who will exploit
the vulnerabilities of people.
First, are you doing research in those areas, and do you
have any observations or comments that you would like to make
about that?
Dr. Salerno. Yes. Ginkgo is one of our largest clinical
trials to date, and I think it is important that we look at
these issues and these interventions in a systematic way so
that we can get real answers. I think the potential for harm
even in some nutritional therapies that are advocated by the
anti-aging folks--and I am anti-aging, but I am certainly----
Senator Mikulski. Are you talking about ``The Wrinkle
Cure'' stuff?
Dr. Salerno. Yes, but certainly we need to do this safely.
Senator Mikulski. We all buy the books.
Dr. Salerno. I visited my mother last weekend in New York,
and she has a whole pharmacy on her night table, and I went
through and said, ``Do not take this, do not take this, take
this''--it just shows you that these are our most vulnerable
people and people who often do not have a lot of resources to
spend on these cures that do not work.
So the research that we are doing is to give us answers and
give the public information that we have to get out there when
we have the answers, both to health professionals and the
public. I think that is very important in getting the message
across about what is safe and what is not.
Senator Mikulski. Well, two things--first, I agree with
you, and I hope there is collaboration going on with the Center
for Complementary and Alternative Medicine. Under President
Clinton, there was a White House Commission on Complementary
and Alternative Medicine, and their report will be coming out,
which I think will be very important information that you can
use.
Let me go to the non-medication issue. We know we are doing
research on those things where there could be a drug for the
cure, but most of all, a cognitive stretch-out. As you said, 3
to 5 years can make all the difference financially,
emotionally, and so on. But
[[Page 26]]
you have also talked about the non-medication research. Could
you elaborate on that for us, Dr. Lyketsos?
Dr. Lyketsos. Sure. Those of us who have been taking care
of patients for many years have realized that there are many
strategies that make a difference in their lives and in the
lives of caregivers, and the research is now showing that that
is not just a difference in quality of life, but it impacts on
outcomes like institutionalization. So a team in New York a few
years back showed that a very structured education program for
the caregiver will delay institutionalization by about a year
or two.
There is some other promise that we are hoping to find that
exercise interventions in middle stages of the disease, before
the motor symptoms happen, would improve the functional course
and also delay institutionalization.
Activity interventions might have a lot to do with
preventing behavioral problems that occur, agitation that many
of the patients experience.
Senator Mikulski. What kind of activity?
Dr. Lyketsos. Basically, structuring the day with something
to do, and it probably matters less exactly what you do; it
matters more that you do something, rather than leaving the
person unoccupied where, in addition to deconditioning their
body, they decondition their mind.
So those are the kinds of things that could make a big
difference. A point that I often make when I lecture is that
the evidence is there already that those interventions in terms
of bang for buck have as much success as some of the approved
medicines that we have on the market in terms of delaying, say,
institutionalization, helping life quality. If we put the two
together, it can only improve the mix.
Senator Mikulski. What is interesting to me, in addition to
looking for the medications, is looking for the genetic
therapies for those who might have a family history. They are
so promising now that we have new ways of measuring the brain,
new ways of developing the protocols, and these mice that help
us to learn things faster. Essentially what both of you are
saying is that the things that would keep anyone healthy are
those things that can be helpful--a diet that is low in fat,
big on vegetables and fruits. When in doubt, eat something
green, and if you are still in doubt, eat something greener,
because that provides the folic acid. All those things that our
mothers told us--eat your spinach, eat your kale, pizza is not
a vegetable--as well as exercise are important. It would then
seem to me that as you are working on this, if people looked at
other associations like heart disease, diabetes--the
associations are all recommending the same things.
This also goes to education. If I may say, every doctor you
go to for just about anything you have will tell you that you
need a reasonable diet, and you need to exercise, and they
usually have nothing else to tell you after that. So, how do
you do exercise?
My mother, who had diabetic neuropathy, learned exercises
to do in her home, and she was faithful in doing that: using
her wheelchair, walking back and forth on some plastic that we
put down to keep those legs moving, one-pound weights that she
could use at home, leg lifts--all those practical tips. You are
not going to use
[[Page 27]]
a primary care doctor to do this teaching. This then goes to
public education in many ways, because it is different exercise
for different groups, some homebound. But again, this could
even be part of the structure of the day; am I right?
Dr. Lyketsos. Absolutely, yes. In fact, I want to point out
that Laura Poterwels, who is in the room, with our group is a
graduate student in our school of public health and is an
exercise physiologist who is developing an Alzheimer's-specific
intervention program as part of the research.
We are not sure yet how to do this, how to develop the
exercise intervention for the person with Alzheimer's disease,
because you have to take into account their memory impairment,
the availability of the caregiver to help them, and so forth.
So it is a really critical issue.
Senator Mikulski. Well, first of all, so much has happened
since we came here on that very melancholy day when we knew
that our father was changing--that was in 1985, so one can get
a sense of the progress; it has been almost 20 years. Then,
there was care and compassion, and I know that through the
adult daycare program here, the structure that it provided,
even though we were faithful at home, was a different type of
structure. Mother at times needed a breather from him, and he
needed a breather from her. And this was great, but even
compared to where we were 3 years ago, looking at behavioral
issues, diet, exercise, genetics, pharmaceutical solutions,
this multi-pronged approach is really so far advanced. And when
you think about what the whole Institute is doing for
essentially less than $1 billion a year, I think the American
taxpayer should know that we are really getting value for our
public investment. There is strong science here, but it is
science with practicality and compassion, and that is really
outstanding.
Do you have anything else you would like to tell me, just
open-ended, about what we should be doing. You see, this
becomes a permanent record of the United States Senate's look
at what we should be doing. Do you have anything else that you
would like to share with me?
Dr. Salerno. I would just like to say that any funds that
we get for research I can guarantee that we will invest wisely,
because there is a lot that we can do, will be doing, and I
think we have the long view of research, and that is that we
are going to find a cure, and we are going to prevent this
disease, and that it may not happen tomorrow, but it will
happen.
Dr. Lyketsos. One point that I want to emphasize again to
you, Senator, is the importance of teaching our seniors about
research participation. That is probably one of the biggest
barriers that we face in the field is all the education we have
to do every time with every senior.
I gave the example of the ADAP study, where we ask seniors
to come in and take a pill every day that might have an anti-
inflammatory in it, and they might have to do this for 5 years.
Julie Pedrosa, who is our coordinator and also here today, has
groups of seniors 20 at a time where she spends a long time
discussing what research is about.
[[Page 28]]
So educating our public that this is the research that
needs to happen and encouraging them to consider participation
will make a big difference.
Senator Mikulski. What are the barriers?
Dr. Lyketsos. There are many barriers. One is their
suspicion about research.
Senator Mikulski. They do not want to be guinea pigs.
Dr. Lyketsos. They do not want to be guinea pigs. And that
is particularly true among some of the communities that have
been badly affected by research.
Senator Mikulski. Yes. The African American community
remembers Tuskegee.
Dr. Lyketsos. Right. So that is one big barrier. Another
barrier is the concern about the risks of being in research. If
you are talking about treatment research, there are side
effects to medicines.
There has been a lot of bad press over the last year or two
about research, especially in the Baltimore area, so that does
not help a lot.
So there are many barriers, and if we can educate our
public amongst the seniors that ultimately, it is going to come
down to them being in the studies, that that is how the
prevention work will be able to succeed in answering the
questions.
Senator Mikulski. But you know, Doctor, I get calls in my
office from people who are desperate, not only in this field,
but cancer patients, patients with advanced diabetes, and very
often patients with some form of pediatric cancer. People are
desperate to get into the clinical trials. They call me as if
it is a political perk rather than coming in--but they come so
late, and after everything is exhausted, they look to a
clinical trial to be, if you will, their final solution or
their final grasp. So I do think there needs to be more
education about it.
Now, before I wrap up, I would not be me, in Highlandtown,
if I did not do what I used to do when I was a Congresswoman.
When I was a city councilwoman, and I would come out to the
neighborhoods here, and when I was a Congresswoman, we would
always have town hall meetings where you could ask me
questions, I could ask you questions back, or if you wanted me
to ``Give them hell, Barb,'' at city hall, whether it was
William Donald Schaefer or someone else. President Reagan was
always particularly mesmerized by what I told him constituents
would say. If there is anybody here who would like to ask me a
question or something that you would like me to take back to
Washington to tell my Senate colleagues and even the White
House.
Yes--and please identify yourself.
Ms. Boswell. My name is Tara Boswell, and in addition to
working as a facilitator for the Alzheimer's Association, I
work in adult daycare. One of the questions and concerns that I
have is that medical assistance does not recognize Alzheimer's
as a legitimate need for medical daycare, and a lot of people
are turned away who could really benefit from the structure and
socialization that the doctor was talking about. So that was
one thing that I was hoping you could take back with you.
Senator Mikulski. Very good. That is an excellent point.
Anybody else? Yes?
[[Page 29]]
Ms. West. I am a facilitator for the Alzheimer's
Association also, and I had a problem with the power-of-
attorney for my aunt. The lawyers suggested that my cousin get
custody rather than power-of-attorney, and it worked out better
for him for that particular reason.
But I would also like to know about people who have to
leave their jobs to take care of a person or a family member
with Alzheimer's. There seems to be no support out there for
them, no medical insurance for them, and that is also a
problem.
Senator Mikulski. What is the issue--loss of an income?
Ms. West. The loss of income, and when they try to get
medical assistance for themselves, they are told, ``That is
your choice; you chose to stay home and take care of that
person,'' when there was no one else there to take care of
them.
Senator Mikulski. May I ask your name?
Ms. West. Shirley West.
Senator Mikulski. Ms. West, when we hold our hearing on
caregiving, this is one of the issues that we want to bring
out. We have been talking about this because again, caregiving
is also a tremendous loss of income, or in families where they
take a part-time job, it is usually the women who do this.
Second--let us just say it is a daughter helping out a
parent. I will use that as an example--it affects her income,
it affects her own Social Security in the future, and it also
means that if you are part-time, you cannot get health
insurance unless you go the individual route, and then it costs
you $6,000 or $7,000--and if you could afford that health
insurance, you would not worry about it in the first place.
Am I on the right track?
Ms. West. Exactly.
Senator Mikulski. Well, thank you. You bring up a very good
point, because we have to find a way to acknowledge
particularly those who take a step-down in their own income to
be able to help their families.
In another administration, when I was working with Vice
President Gore, we were looking at the Social Security issues
for both homemakers and caregivers because of their loss of
income. It was like a ``Mommy tax,'' and the better the
daughter, if you will, she was penalizing herself.
So we want to come back and look at that, and you raise a
very good point. Thank you for bringing it to our attention.
Anybody else? Yes?
Ms. Sigurdson. Senator, my name is Kathy Sigurdson. I am a
former caregiver of my husband who had Alzheimer's. To me, it
is very important to have support for the caregivers. It is
important to have more research funds to find a cure and more
support for the caregivers for the Safe Return Program. My
husband was lost for 90 minutes. The caregiver support program,
the daycare, was very important to me because I could
concentrate on work and know that he was safe for 8 hours.
Senator Mikulski. I am sorry--what is the thing that is
important to you?
Ms. Sigurdson. The daycare.
Senator Mikulski. The adult daycare.
[[Page 30]]
Ms. Sigurdson. Yes. I was able to go to work knowing that
he was safe for 8 hours.
Senator Mikulski. And not only safe, but getting the
support and encouragement that he needed.
Ms. Sigurdson. Yes, yes, and the structure that he needed.
So the caregiver support program is very important, Safe Return
is very important, and money for research--hopefully more than
$1 billion.
Senator Mikulski. Thank you for your eloquence. Thank you.
Anybody else?
Mr. Savage. Get campaign reform in place and make it work.
Ms. Ward. Senator, there is another barrier that seniors
have to participating in research, and that is that they want
to know whether they are in the control group or----
Senator Mikulski. They want to know if they are on the
placebo.
Ms. Ward. Exactly.
Senator Mikulski. But then, it is not a placebo if you know
you are getting it. The placebo is the belief that you are
getting it.
Ms. Ward. Yes, but they do not want to participate if they
are not going to get help, and that is another barrier.
Senator Mikulski. And that is one of the challenges of
research; it really is. But I think we are an informed public,
and also, I think there are also generational differences. I
think that younger people as they are coming along are more
interested. But this is it.
It seems, though, that we have to work on the cures; then,
we have to work on those who are part of a team, whether they
are social workers, doctors or nurses, to really understand,
first of all, the normal processes of aging so you can know
what is not going well; and then, as they are able to identify
it, to get people on the right track; and then, we really have
to pay people. We really have to pay doctors, we have to help
the nurses, et cetera. So we have some big challenges.
I want to ask the exercise lady to tell me what you are
doing.
Ms. Poterwels. I am currently working on a Ph.D. in public
health at the Hopkins School of Public Health, but Dr. Lyketsos
and I are working on exercise trials. This is a small pilot
trial where half of the people will get a home-based exercise
intervention which involves the resistance bands and personal
instruction as well as pictures of each exercise, so that
hopefully, they cannot really go wrong, and personal attention.
The other half will get a home safety evaluation and
recommendations for improving that.
We are hoping to at least improve the functional ability or
at least maintain the physical function and activities of daily
living of these people.
Senator Mikulski. What are you looking at, though? Are you
looking at what exercises might improve cognitive ability? Are
you looking at how to get older people in an exercise program
and have them stick with it?
Ms. Poterwels. We are actually just recruiting Alzheimer's
disease patients, so it is only going to be those who have a
caregiver that is with them for at least 10 hours a week; and
we will be doing this home-based exercise program and looking
at the beginning and at the end for cognitive outcomes,
behavioral outcomes,
[[Page 31]]
as well as physical functioning to see if it improves or
maintains that.
Senator Mikulski. Yes, Dr. Salerno.
Dr. Salerno. I would just like to add that the NIA has a
major campaign for the promotion of exercise among all older
people, and we have a free booklet that you can get by going on
line, and you can get the telephone number on our website or
call our Alzheimer's Disease Education and Referral Center. It
tells you how you can safely in later age exercise and keep
yourself health.
Senator Mikulski. I am a big believer in videos, and I
would love to know from all of you if it is included in the
funds to get the information out, because sometimes the ability
to put out into the public what we have already learned is
critical--things that are so practical--we have got to find
better ways of doing that.
The great thing about a video is that the caregiver can
come in and watch it, but so can the 15-year-old niece or
nephew who says, ``I am going to do this with Grans or Pops,''
and turn it into a fun thing, rather than everybody being
gripped with sadness or feeling helpless. This is not the
grandfather you used to go fishing with, and what can you do?
Well, maybe it is playing hoops from your own living room--
speaking of the Terps these days.
Dr. Salerno. We have a video, too.
Senator Mikulski. Good. I would like to see that video.
I know my staff is going to start handing me these little
blue cards that tell me it is time to wrap it up. But first of
all, I want you to know that I have found this conversation
very informative and very instructive for all who participated,
but I also want you to know that I found it very inspirational.
I am really inspired by the dedication of American families to
the people they love. You know, we do a lot of analyzing of our
society about what is right, and maybe it is not the way it
was, but just listening to you, I know there is a tremendous
amount of dedication, as well as among the scientists and the
clinicians and all of their work. You have really inspired me.
You have really energized me. You have really encouraged me to
eat more folic acid, to ``Go green,'' and get my own exercise
program.
So just know that when I am in Washington, I will never
forget you. God bless you.
[Additional material follows.]
[[Page 32]]
ADDITIONAL MATERIAL
Prepared Statement of Peter V. Savage
Ina Dutra Savage, born in Rio de Janeiro, Brazil in 1941, came to
the U.S. for the first time to attend high school as an international
exchange student in 1958. After graduating from Mineola High School,
she returned to Brazil to attend the Catholic University of Rio, where
she got a degree in sociology and became an associate teacher at the
university. Because of her linguistic ability--she spoke Portuguese,
French, English and Italian--she was hired by the U.S. Embassy to serve
as a social secretary assigned to the U.S. Ambassador, Lincoln Gordon.
In this job, she met her husband, Peter Savage, and they were married
in 1967. She was assigned with her husband, a CIA officer, to Brazil
and, later, Argentina, returning to the U.S. in 1978, with her husband
and three daughters. When her children were of school age, Ina enrolled
in a Master's Degree program for linguistics at University of Maryland,
graduated in 1988 and was licensed to teach French and Spanish in the
Baltimore public school system in 1990.
The first sign of any difficulty for Ina was her apparent inability
to remember her teaching program in classes and her inability to
maintain class discipline--both very much out of character. In 1991,
she had to resign as a teacher and signed up as a translator/
interpreter for Spanish, French and Portuguese. Other lapses and
orientation problems appeared and, in 1993, she was referred to a
neurologist. After more than a year of exams, observation, and tests it
became apparent that there was a progression to her ailment and she was
referred to Shepard Pratt for more analysis. After long study, she was
diagnosed with Alzheimer's disease in October, 1995. At that point, the
impact on the family began to be felt.
The first problem was that Ina could no longer drive a car, so that
getting kids to and from school, shopping, and daily activities were
shifted to her husband or older daughters, two of whom were off at
college. The Alzheimer's Association was helpful in identifying support
groups where others could point the way to the problems we faced. An
elder care lawyer had to be identified, our wills and living wills had
to be drawn up), and we had to plan for our future finances to deal
with an uncertain future with an uncertain timeframe.
immediate and pressing problems
The immediate concerns following the diagnosis were:
Where could Ina's husband, Peter, find a job that allowed
flexible time for him to deal with the family chores Ina could no
longer perform?
How could we get health insurance that could avoid a pre-
existing condition exclusion for the Alzheimer's?
Where should we go for medical attention to the immediate
manifestations of a disease that was, probably, Alzheimer's?
What resources were available to support any of these
decisions that had to be made?
long term problems
Longer term problems also loomed and needed consideration in the
short term:
If institutionalization were the likely end of the line
for Ina, how would she qualify for Medicare and Medicaid?
Social Security had not recognized several years of Ina's
independent contractor work and, accordingly, disqualified her time
necessary to qualify for benefits. How to deal with this?
What were the roles that each member of the family would
take on as Ina's abilities declined?
Who are the lawyers, accountants, brokers, psychologists,
and support groups who can help sort out these questions?
None of these questions has a definitive answer that suits every
family. Certain it is, however, that when a mainstay of a household
becomes incapacitated--becomes a vegetable--the world of a family is
stood on its head. And if there are insufficient financial resources to
meet unexpected needs the impact can be ruinous and relationships
within the family unbearable.
While some of these questions remain unresolved, there were answers
for the short term--pressing questions. Peter got a real estate license
and became a commercial broker so that his hours were flexible and he
could tailor work around family demands.
[[Page 33]]
The family became an incorporated entity where all, including Ina,
were salaried employees or dependents, so that, under Maryland law, a
health insurer could not deny coverage by reason of pre-existing
conditions.
Shepard Pratt referred us to Claudia Kawas, a neurologist
conducting various tests for new drugs aimed at Alzheimer's disease at
the Bayview Neurological Center at Johns Hopkins, who introduced
various courses for enrolling in new clinical trials. Staff working
with Dr. Kawas were helpful in assessing how our resources should be
allocated in meeting the crisis. They recommended a book, ``The 36 Hour
Day,'' by Dr. Peter Ravens (and others). This book was indispensable
reading.
In addition, Dr. Kawas was in a position to diagnose Ina's
situation to see which study might be most suited to her treatment. In
the end, however, Ina would have had to discontinue taking drugs which
had proven beneficial (donepezil) to qualify her for several of the
studies being conducted by Dr. Kawas or for other studies being
considered in the field. Ina is presently involved in a long term study
measuring the progression of memory disorder at the Bayview Research
Center and has donated her brain on her death, to Johns Hopkins.
Her present doctor, Vassilis Koliatsos, of Shepard Pratt
Neuropsychiatry Program, has also kept us current on new clinical
trials under consideration and advised us on what courses to consider.
Ina volunteered for the positron emission tomography (PET) study at
Johns Hopkins but, again, she would have had to stop taking donepezil
for a 6-month period prior to the study.
Dr. Constantine Lyketsos, of the Johns Hopkins Neuropsychiatry
Service was very helpful in getting Ina around the gatekeepers to the
ELAN/EN1792 vaccine study at the Mayo Clinic last September, but her
mini-mental scores were lower than the candidates permitted in the
sample. This test was ended abruptly and her non-participation was
probably a grace.
Most of the longer term problems have still to be resolved, but the
most aggravating part has been dealing with the bureaucracy at Social
Security who have been so unhelpful that a lawyer has had to become
involved at considerable expense.
The roles of family members are still being resolved. Ina now
requires caretakers 24 hours a day, so the daughters have advertised
for caretakers, interviewed them, made a schedule and coordinated it so
that Peter can have his work day free to go to the office and have
weekend activities out of the house. One daughter acts as a caretaker 3
days a week and Peter is on duty nights and weekends.
The long-term prospects are still clouded by Ina having to qualify
for disability and Medicaid within the time that she may require
permanent institutionalization. In addition, the family has been
challenged by the difficulty in finding appropriate activities to keep
Ina stimulated as the disease has progressed. Each case of Alzheimer's
disease affects the family and the individual differently. Services and
supports that are utilized by one family or individual may not meet the
needs of another.
Senator Mikulski, I thank you for inviting me to speak at this
hearing and for the opportunity to discuss how Alzheimer's disease has
affected the Savage family.
Prepared Statement of Cass Naugle
Senator Mikulski and honored guests, I am pleased to have the
opportunity to discuss the impact of the Alzheimer's Disease
Demonstration Grants to States Program. This program was created in
recognition that Alzheimer's disease affects 4 million Americans and
that most of their care is provided in the community by family members.
The goals of the Alzheimer's Disease Demonstration Grants to States
Program are to increase the availability of supportive services for
people with Alzheimer's and their caregivers, and to assure that these
services are effectively coordinated.
In addition to working as executive director of an Alzheimer's
Association chapter, I have experienced this disease first-hand. First,
my father's sister, who helped raise me, developed Alzheimer's, then my
mother's younger brother. My father was also diagnosed. We cared for
him at home for 3 years until he passed away last June. Now my mom, my
hero, is a victim of this disease. Using adult day services and in-home
caregivers, my siblings and I are able to keep her in her home, which
is very important to her at this point. This is the home where she was
born, where she raised eight children, where she lived with my father
for 62 years.
As difficult as it has been to lose people I love to this disease,
I know my family was fortunate. I knew what questions to ask about our
family members' care and I knew where to go for answers to their care
needs. Unfortunately, too often this is not the case. Finding the way
through a complex system of community services can be frustrating to
families already overwhelmed by the challenges of caregiving.
[[Page 34]]
As executive director, the saddest thing I have ever heard from a
caregiver is ``I wish I had known about these services when my family
member was alive.''
The Alzheimer's Disease Demonstration Grants to States Program
helps States assure that community services are accessible and
appropriate for the unique needs of people with Alzheimer's and their
families. The initial program in 1992 was created to address the needs
of underserved populations and gaps in community services for people
with Alzheimer's. Twenty-nine States received grants through this
program. With this funding, States were able to develop outreach
programs and educational materials for under-served rural, urban and
diverse ethnic populations. It enabled States to develop respite
resources and other supportive services. The program also funded the
development of a wealth of training materials for primary and long-term
care providers of people with Alzheimer's.
The current phase of the Alzheimer's Disease Demonstration Grants
funded nine additional States. The focus is on integrating dementia
care services into the mainstream home and community based care system.
The four Maryland chapters of the Alzheimer's Association benefited
from this critical funding in the first demonstration program from 1992
to 2000 and it has truly made a difference for families coping with
Alzheimer's disease. It enabled the Alzheimer's Association to reach
thousands of families who were not using services, because they did not
know they were available or because they did not know how to access
them.
The Western Maryland, Eastern Shore and Southern Maryland sites
targeted families in rural areas. These sites collaborated with other
community agencies and developed care coordination programs to help
effectively connect families to services. Here in Baltimore City, we
focused on outreach to African American families. This funding helped
our chapter to establish the three support groups targeted to African
American caregivers, and it has resulted in increased participation of
African American families in all of our services.
The Maryland Alzheimer's Demonstration Grant has had a significant
impact on the availability and accessibility of supportive services for
caregiving families. It enabled the chapters to offer respite care
subsidies, to give family caregivers time off to rest. It increased the
number of caregiver education programs, to inform caregivers about the
disease and about how to access community resources. It provided for
training of assisted living, nursing facility, home health agencies and
adult daycare staff, to enhance the quality of care for people with
Alzheimer's. It helped the chapters to train physicians and health care
professionals in community clinics, to encourage early diagnosis and
intervention with treatments and services. Finally, it promoted
collaboration among the Alzheimer's Association chapters and public
agencies to better coordinate care and services throughout Maryland.
The Alzheimer's Association is participating in the current
Alzheimer's Demonstration Grant Program through the Maryland State
Department of Aging. This program has sites in two areas of the State
with limited caregiver services, the Eastern Shore and Southern
Maryland. The funding has established a consumer-directed respite
program for family caregivers. It also is helping to strengthen the
skills of existing and future health care workers through dementia
training. It is encouraging the development of new services by offering
training to entrepreneurs on how to start and manage a respite services
business.
Senator Mikulski, speaking on behalf of the Alzheimer's
Association, and the 85,000 Marylanders with Alzheimer's and their
families, I applaud your efforts to expand these critical programs
through the Alzheimer's Disease Research and Caregiver Act. This bill
will help continue to ensure that no one faces this illness alone, by
providing essential, accessible services and hope for the future.
Prepared Statement of Sue Vaeth
Ms. Chairman and Members of the Committee:
I am pleased to submit written testimony on behalf of the Maryland
Department of Aging (MDoA) regarding Maryland's Alzheimer's
Demonstration Project.
MDoA's mission, in partnership with the local Area Agencies on
Aging, is to provide leadership and advocacy for older Marylanders and
their families through information, education, programs, and services
that promote and enhance choice, independence and dignity. The
Alzheimer's Demonstration Grant Project allows us to develop new
methods of providing services that address our mission.
Given the recent increases in State and Federal funding for
services in the support of family caregivers, the State needed to build
on its current service delivery systems to facilitate the access of
families caring for individuals with dementia to the services that were
developed with these funds. Maryland began this process by taking
advantage of the National Alzheimer's Demonstration Project funding to
im
[[Page 35]]
prove the responsiveness of the existing home and community-based care
system for persons with dementia and their families. Maryland's project
focuses on developing an innovative rural model that addresses the
critical lack of dementia-competent service providers, as well as
providing respite to families in the ways families determine to be most
helpful. As part of this project, MDoA is working with private partners
to move interdepartmental and community-based efforts forward to create
a more efficient and accessible system. The Alzheimer's Association and
local micro-enterprise business developers play a significant role in
this project.
Background
The State of Maryland received Alzheimer's Disease Demonstration
Grants to States funding from 1992 to 2000. During this time the
Alzheimer's Association chapters, in partnership with the Maryland
Department of Human Resources, led successful outreach efforts to
inform rural areas and the City of Baltimore about resources for
individuals with Alzheimer's disease. The funding helped develop and
grow a new Alzheimer's Association chapter on the Eastern Shore,
established a branch office in Southern Maryland, and assisted the
Western Maryland Chapter to establish a branch office in Hagerstown.
The project dramatically improved the capacity of the Central Maryland
Chapter to serve African-American families and improve care networks in
Baltimore City. The demonstration project made significant progress in
developing support groups among minority and rural populations, as well
as training family caregivers. In recent years, the project trained
hundreds of health care providers and physicians about Alzheimer's
disease.
This project was noteworthy in its ability to involve communities
in addressing their own particular needs. A strong infrastructure now
exists in rural, underserved areas as a result of this demonstration
grant.
Since the inception of this project, significant changes have
occurred. While Alzheimer's disease is a now a household word, families
in rural areas are still having difficulty accessing services. Those
with and without the ability to pay cannot find individuals who will
provide the care needed. The booming economy of the late l990s and
early 2000 created a demand for employees and low unemployment.
Individuals willing to accept a demanding, skilled position for low
wage, inconsistent hours and few benefits became increasingly more
difficult to find, even in rural areas with higher than average
unemployment. Developing new services for people with dementia in rural
areas is challenging. The lack of large population centers, the absence
of a private-pay market, the small or non-existent pool of trained
employees, and the inadequate reimbursement from public sources,
creates an unresponsive environment for individuals or organizations
seeking to serve the growing population of individuals with dementia.
The new Alzheimer's Demonstration Project provides the technical
assistance necessary for developing these potential providers' capacity
to meet the demands of the growing aging population.
The Demonstration Project
The Maryland Alzheimer's Demonstration Project (ADP) has two
objectives: (1) the project will expand the number of rural providers
of dementia-competent care through developing micro-enterprises, or
small businesses owned by low-income entrepreneurs; and (2) the project
will implement a consumer-directed respite care model to improve the
responsiveness, efficiency and quality of care for people with dementia
and their families.
The project is being piloted by three Area Agencies on Aging (AAA),
St. Mary's, Charles, and MAC, Inc., which serves the four lower Eastern
Shore counties. All sites focus on the low-income, rural population.
At least sixty individuals and families will receive respite care
in a way that provides the most relief to them. Families are given
guidance and counseling in developing a plan for services. They
determine who will provide the care, and when and how often it will be
used. Families may identify neighbors or other family members to
provide respite care, or they may choose a provider agency or an adult
daycare center.
The individuals with dementia were on a waiting list for Maryland's
Senior Care Program services. The Senior Care Program, financed by
State funds and administered by MDoA, fills gaps in services for low-
income, older people who have significant functional impairments. The
Senior Care Program creates a package of services that assists
individuals to remain in their homes rather than enter a long-term care
facility. The waiting list exists because of limited funding and the
lack of service providers. Respite funds from the Alzheimer's
Demonstration Grant Program have immediately enabled individuals who
qualify to begin to receive services. Most im
[[Page 36]]
portant, family caregivers are in charge of what kind of respite
services will be provided and who provides the services.
The consumer-directed model will be implemented in tandem with
activities to address the lack of qualified service providers in rural
areas. The Maryland ADP is tackling this issue using a strategically
executed effort to assist individuals to become independent
contractors, to develop micro-enterprises or small businesses owned and
operated by low-income entrepreneurs, and to enhance the dementia-care
expertise of existing providers who may not currently serve individuals
with dementia.
As a result of Maryland's efforts, we expect that at least twenty-
five micro-enterprises will develop business plans and begin service to
individuals with Alzheimer's Disease and their families. The micro-
enterprise partners will train individuals who express an interest in
starting their own caregiving businesses. The new entrepreneurs will
attend classes that include tax and regulations issues, and other
relevant business practices. In addition, new providers, other existing
providers, and family members may receive specific training on working
with people who have dementia.
The Maryland Department of Aging will develop a manual on consumer
directed services and the Alzheimer's Association will develop a manual
for how to create micro-enterprises. The manuals will be published and
made available so this project can be duplicated in other Maryland
counties and nationwide.
The Maryland ADP will result in an improvement in the families'
satisfaction with the services they receive, improved access to respite
and other services that assist families to care for individuals with
dementia, and improved service delivery systems.
Accomplishments
In the first nine months of the project, the participating Area
Agencies on Aging have provided case management and/or respite services
to 67 families. The Alzheimer's Association has entered into
partnerships with local micro-enterprise businesses to develop a
curriculum and training for potential providers. The first of these
training sessions is scheduled for April 2002. Thirty-two people have
signed up to take these business classes. The Alzheimer's Association
has also held several training sessions about dementia for family
caregivers and existing care providers. Additional training sessions
will be offered throughout the grant period.
The following story illustrates how the demonstration project, with
just a little bit of money and some case management guidance has made a
difference for one family.
Mary, 29-year-old woman, has been caring for her mother for 6
years. Mary's mother is diagnosed with Alzheimer's disease, and needs
24-hour care due to constant pacing and wandering. Mary's mother cannot
attend the adult daycare center because of the wandering. Mary assists
her mother with feeding, bathing and other personal care. She does not
want to place her mother in a nursing home.
Mary's husband works during the day and takes care of their two
children, ages 6 years and 6 months, and his mother-in-law in the
evenings. Mary works part time in the evenings at a fast food
restaurant in order to help meet financial obligations.
When the case manager first visited her, Mary was tearful,
exhausted and afraid of losing control. With the guidance of the case
manager over several visits, Mary was able to find a friend who could
help her care for her mother. The grant funds pay for this expense. If
not for the grant, Mary would not be able to get respite assistance. If
she desires, Mary's friend will be able to take advantage of the
dementia training that is offered by the Alzheimer's Association.
Prepared Statement of Judith A. Salerno, M.D.
Senator Mikulski:
Thank you for inviting me to appear before you today to discuss
Alzheimer's disease (AD), an issue of interest and concern to us all. I
am Dr. Judith Salerno, Deputy Director of the National Institute on
Aging (NIA), the lead Federal agency for Alzheimer's disease research.
As a geriatrician who has spent much of my career working with AD
patients and their families, I am delighted to be here this morning to
tell you about the exciting progress we are making toward
understanding, treating, and preventing AD.
As you know, AD is a major public health issue for the United
States, and it has a devastating impact on individuals, families, the
health care system, and society as a whole. An estimated 4 million
Americans are currently battling the disease, with annual costs
estimated to exceed $100 billion. Moreover, the rapid aging of the
[[Page 37]]
American population threatens to increase this burden several-fold in
the coming decades.
However, despite the grim statistics, we have made, and are making,
tremendous progress.
When I first began working with AD patients as a clinical
researcher in NIA's Intramural Program in 1988, preventing or curing AD
was considered, at best, a distant possibility.
Our understanding of AD's underlying biology was limited, and for
this reason it was difficult even to predict what might be effective as
a treatment or preventive.
Today, the picture is considerably brighter. Through laboratory and
population-based scientific studies, we have identified a number of
risk factors for AD, including both genetic and possible lifestyle
factors. Research supported by the NIA and the National Institute of
Mental Health (NIMH) has identified several genes that can cause AD,
thereby helping us identify pathways affecting its development or
progression, which will lead to better molecular predictors of the
disease even before it is clinically apparent.
The development and refinement of powerful imaging techniques that
target anatomical, molecular, and functional processes in the brain
will give us an improved ability to diagnose AD early, while the
patient can still take an active role in decisionmaking.
These techniques, along with better neuropsychological tests, are
also enabling us to identify people who are at very high risk of one
day developing the disease and to determine just how the disease starts
in brain. This knowledge, in turn, may allow early intervention in
persons long before the disease affects their level of functioning.
Most importantly, we are making significant advances toward
effectively treating, or even preventing, AD. NIA is currently
supporting 18 AD clinical trials, seven of which are large-scale
prevention trials. These trials are testing agents such as estrogen,
anti-inflammatory drugs, and anti-oxidants for their effects on slowing
progress of the disease, delaying AD's onset, or preventing it
altogether. We eagerly await the results of these trials.
As we search for effective preventive interventions and treatments
for AD, it is becoming clear that, rather than seeking only a ``magic
bullet'' that will, by itself, prevent or cure the disease, we may be
able to identify a number of potential interventions that can be used
to reduce risk. Several recent studies have highlighted this.
For example, a recent study in the New England Journal of Medicine
\1\ indicates that elevated blood levels of the amino acid
homocysteine, already considered a risk factor for cardiovascular
disease, are associated with an increased risk of developing AD. The
relationship between AD and homocysteine is of particular interest
because blood levels of homocysteine can be reduced, for example, by
increasing intake of folic acid (or folate) and vitamins B6 and B12.
And, in fact, in a separate study in the Journal of Neuroscience. \2\
NIA researchers show that folic acid may protect mice against some of
the symptoms of AD. NIA has ongoing clinical trials of these substances
to test whether supplementation can slow the rate of decline in
cognitively normal men and women as well as in women at increased risk
for developing dementia, and a trial on people diagnosed with AD is due
to start in 2003. Other studies have indicated that the use of statins,
the most common type of cholesterol-lowering drugs, may lower the risk
of developing AD. A study of statins to slow the rate of disease
progression in AD patients is planned for fall 2002.
---------------------------------------------------------------------------
\1\ S. Sesdradri, A. Beiser, J. Selhub, et al., ``Plasma
Homocysteine As A Risk Factor For Dementia and Alzheimer's Disease,''
N. Eng. J. Med., 346:7,pp.476-483.
\2\ Kruman, T.S. Kumaravel, A. Lohani, W. Pedersen, R.G. Cutler, Y.
Kruman, N. Haughey, J. Lee, M. Evans, and M.P. Mattson, ``Folic Acid
Deficiency and Homocysteine Impair DNA Repair in Hippocampal Neurons
and Sensitize Them To Amyloid Toxicity in Experimental Models of
Alzheimer's Disease,'' Journal of Neuroscience, 22:5,pp.1752-1762.
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Another promising area of study is the role of mentally stimulating
activities throughout life as a factor capable of maintaining cognitive
health or even reducing the risk of cognitive decline or AD. Through
its Advanced Cognitive Training for Independent and Vital Elderly
(ACTIVE) study, NIA is currently exploring whether three specific
interventions (on memory, reasoning, and speed of processing) can
maintain or improve functioning in unimpaired, community-dwelling older
adults. In addition, NIA-supported researchers recently found that more
frequent participation in activities such as reading, doing crossword
puzzles, or playing card games is associated with a reduced risk of
later developing AD. \3\
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\3\ Wilson RS, Mendes de Leon CF, Barnes LL et al., ``Participation
in Cognitively Stimulating Activities and Risk of Incident Alzheimer
Disease,'' JAMA 287: 742-748.
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[[Page 38]]
In addition, scientists funded by NIA and NIMH are developing and
refining powerful imaging techniques that hold promise of earlier and
more accurate diagnosis of AD, as well as improved identification of
people who are at risk of developing the disease. For example, recent
studies suggest that positron emission tomography (PET) scanning of
metabolic changes in the brain and magnetic resonance imaging (MRI)
scanning of structural brain changes may be useful tools for predicting
future decline associated with AD and other neurodegenerative diseases.
Researchers have also developed a new method of functional MRI (fMRI),
a technique for visualizing activity of brain structures, that is both
easier on the person being tested and capable of imaging smaller
structures in the brain than has been possible in the past.
These methodologies may also be useful for evaluating the efficacy
of drugs in stemming the progression of AD or preventing its onset
altogether. However, these and other emerging imaging techniques, while
promising, require further testing and analysis before they can be
routinely adopted in the clinical setting.
Another very important area of research involves easing the burden
on caregivers of AD patients. In a sense, the AD ``patient'' is not
only the person with the disease, but the entire family unit is. Most
Americans with AD are cared for outside the institutional setting by an
adult child or in-law, a spouse, another relative, or a friend. The
financial costs of this care can be devastating to families; by one
estimate, the average lifetime cost per person for patients with AD is
$174,000. In addition to these financial burdens, caregivers frequently
experience significant emotional stress and physical strain, yet they
often do not receive adequate support.
NIA is investing in new approaches to assist these often forgotten
Americans. A first priority is to assess the magnitude of the problem.
For example, the ongoing Aging, Demographic, and Memory Study (ADAMS)
has been designed to assess dementia and AD among Americans, the burden
on caregivers, the economic cost of dementia to families and to
society, and the burden of dementia over the course of the illness.
NIA is also supporting a study of a combined behavioral and drug
intervention on patients with mild AD. In this study, caregivers will
be key participants in the behavioral intervention, and the researchers
hypothesize that this participation will reduce caregivers'
psychological stress. In addition, NIA is supporting a large, multi-
site clinical trial, REACH (Resources for Enhancing Alzheimer's
Caregiver Health), to examine the effectiveness of various
interventions to strengthen family members' capacity to care for
individuals with AD. Thus far, the study has recruited over 1200
caregiver/care recipient pairs at six different sites across the
country to participate in 12 different interventions. REACH is designed
to show us what works to support caregivers and at what cost; we
anticipate that the first findings from this trial may be available
within the next several years. The NIMH is supporting a major project
called the Clinical Anti-psychotic Trial of Intervention Effectiveness
for Alzheimer's Disease (CATIE-AD) designed to help identify effective
treatments for behavioral problems in AD, to help reduce the burden of
care for both providers and families.
The process of translating basic science findings into clinical
interventions is a challenging but critical component of AD research.
One promising finding of recent basic research efforts was the ability
of an immunization strategy to prevent or reverse formation of amyloid
plaques in mouse models of AD. The initial clinical trial of this AD
vaccine approach, conducted by the Irish pharmaceutical company Elan
Corporation, plc and not an NIH-funded trial, was halted earlier this
year when a number of participants on the experimental treatment were
found to have brain inflammation. Despite the unfortunate outcome of
this trial, the science on which the study was based will provide a
base on which to build better and safer strategies for arresting or
reversing the brain lesions of AD. In collaboration with the National
Institute of Neurological Disorders and Stroke (NEDS), NIA has already
issued a Request for Applications (RFAs) and funded a number of studies
to better understand the science underlying the vaccine approach.
The RFA with NINDS is one of many collaborations in which the NIA
participates as part of its program of AD research. NIA frequently co-
sponsors RFAs and Program Announcements (PAs) with other institutes,
and leads an inter-institute AD working group. With NINDS and NIMH, NIA
co-sponsors the Cognitive and Emotional Health Project (Healthy Brain
Project), the goals of which are to assess the current state of
knowledge of predictors of cognitive and emotional health with age and
to accelerate the pace of scientific advances in these fields. NIA also
collaborates with other institutes, including NlNDS and the National
Institute of Child Health and Human Development, to conduct preclinical
toxicology tests on compounds that may be effective against AD, and,
with the National Center for Complementary and Alternative Medicine,
co-sponsors a large clinical trial of ginkgo biloba as an AD
preventive.
[[Page 39]]
Fifteen years ago, we did not know any of the genes that could
cause AD, and we had no idea of the biological pathways that were
involved in the development of brain pathology. Now, we know the three
major genes for early onset disease and one of the major risk factor
genes for late-onset disease, and we have extensive knowledge of
pathways leading to the development of AD's characteristic amyloid
plaques in the brain. Ten years ago, we could not model the disease in
animals. Today, transgenic mice are an invaluable resource for modeling
amyloid plaque development in the brain and in testing possible
therapies. Five years ago, we did not have any prevention trials funded
and had no ways of identifying persons at high risk for the disease.
Now, we have seven ongoing prevention trials, and scientists are
identifying persons at high risk for developing AD by imaging,
neuropsychological tests, and structured clinician interviews. And as
recently as one year ago, we did not understand anything about how
plaques and tangles relate to each other. Now, through the creation of
the first double transgenic mouse to produce both plaques and tangles,
we know that plaques in the brain can influence the development of
tangles in brain regions susceptible in AD.
It is difficult to predict the pace of science or to know with
certainty what the future will bring. However, the progress we have
already made will help us speed the pace of discovery, unravel the
mysteries of AD's pathology, and develop safe, effective preventions
and treatments, to the benefit of older Americans.
Thank you, Senator Mikulski, for giving me this opportunity to
share with you our progress on Alzheimer's disease. I would be happy to
answer any questions you may have.
Prepared Statement of Constantine G. Lyketsos, M.D.
Good morning. Let me begin by thanking you Senator Mikulski for
holding this very important hearing and for inviting me to testify this
morning. This is just one more example of your constant and invaluable
leadership in the fight to conquer Alzheimer's disease. I am delighted
to be here with my friends from the Alzheimer's Association and want to
acknowledge that organization's ongoing staunch advocacy here in
Baltimore, in Maryland, and across the country, on behalf of people
with Alzheimer's disease and their families. It is an honor for me to
serve as chair of the Medical/Scientific Advisory Committee to the
Central Maryland Chapter of the Association.
I also want to acknowledge Dr. Richard Hodes, Director of the
National Institute on Aging (NIA) and his Deputy Director, Dr. Judy
Salerno who is also with us today. They are leading a rapidly
escalating effort, not just at NIA but also across institutes
throughout NIH, to find the answers to Alzheimer's disease. They have
attracted the best scientists to this important enterprise--now they
need the money from Congress to take advantage of the scientific
opportunities that have been created.
I speak to you today as a scientist and medical school professor at
Johns Hopkins, as a physician who has cared for thousands of patients
with Alzheimer's disease and their families, but also as the spouse of
a woman whose grandmother suffered greatly before dying from this
horrible illness. Alzheimer's has touched me personally, as it has so
many here in this room today.
Most of us are likely to live at least until age 65, and many of us
will live to age 85 or older. In fact, when I ask audiences to whom I
speak how many expect to live to be 85 years, almost everyone raises
their hand. Those of us living to 65 have 1-in-10 chance, and those of
us living to 85 have as much as a 1-in-3 chance of developing
Alzheimer's disease or a related condition. Therefore, the specter of
Alzheimer's disease is a very personal one. It will affect us all
directly or indirectly in the years to come.
Research is an essential part of the battle to conquer Alzheimer's
disease. The ultimate goal must be to find treatments that will cure,
prevent, or delay this illness. At the same time, we must focus our
energies on research designed to improve the lives of the 4 million
victims currently alive in the United States, and the countless others
worldwide, for whom a prevention or cure will come too late. And, we
must research ways to improve the lives of the caregivers, who are just
as affected by the disease. It is critical that we as a Nation dedicate
adequate resources to this effort.
That is why I so strongly endorse S. 2059, the Alzheimer's Disease
Research, Prevention and Care Act of 2002, which you and Senator
Kennedy have introduced to assure adequate resources for the essential
research that must be done in the immediate years ahead. And by
reauthorizing and expanding the Alzheimer's grant programs to the
State, you will help assure that what we learn about Alzheimer's
disease is translated to better access, care and treatment for people
with the disease and their caregivers.
[[Page 40]]
Your bill provides the essential stimulus to help the goal set by
the Alzheimer's Association and endorsed by your colleagues on the
Senate Appropriations Committee, to increase Federal funding for
Alzheimer's research to $1 billion per year.
Good research is costly, but the potential return on investment is
huge. For a Congress concerned about controlling health care spending
and guaranteeing the future of Medicare, finding a way to stop
Alzheimer's disease must be a very high priority.
We at Johns Hopkins are proud to be at the forefront of both
research and care of Alzheimer's and related disorders. Our memory
disorders clinical program, one of the first ever established in the
United States, spanning the several Johns Hopkins medical institutions
and our affiliated long-term care facility, Copper Ridge, provides
diagnostic evaluations and ongoing care ``from diagnosis to the end of
life'' for thousands of patients with Alzheimer's every year.
We now know a great deal about evidence-based, systematic care for
people with Alzheimer's disease, which can make a substantial
difference in the lives of our patients and their families. Current
treatments, which include a combination of medications, counseling, and
a variety of other interventions have been shown to alleviate symptoms,
to delay institutionalization, and to delay the course of this
progressive illness. While the cure is not yet on hand, what we have
today can be of great benefit when properly applied. While it is beyond
the topic of this particular hearing, I would emphasize the urgency of
incorporating this knowledge into health and long term care policy.
That includes adding a prescription drug benefit and chronic care
coverage to Medicare.
alzheimer's research opportunities and priorities
We are here today to discuss the research needs for the future.
These can be summarized in a few broad strokes.
First, we need to better understand the biology of Alzheimer's
disease. This involves laboratory work to understand the complex
mechanisms involved in the brain degeneration, the hallmark of the
condition. My colleagues at the NIA-funded Johns Hopkins Alzheimer's
Disease Research Center are working hard every day in this effort.
Second, we need to better characterize risk and preventive factors
for Alzheimer's disease through epidemiologic research. Research at
Johns Hopkins has already led to the identification of estrogen and
NSAIDs (non-steroidal anti-inflammatories) as possible preventive
factors, and to the implementation of prevention studies using both of
these treatments.
Much more needs to be known about the risk and preventive factors
for dementia so as to develop effective preventions or treatments.
Currently under investigation are the role of genes, nutrients,
medications (prescription and over the counter), and other biological
factors (e.g., homocysteine) in the development of AD. Recent research
out of Hopkins indicates that the incidence of Alzheimer's peaks and
then declines in late life. This research also suggests that a large
proportion of the population may not be susceptible to the development
of Alzheimer's. The reason for this non-susceptibility likely includes
some combination of protective factors involving both genes and
environment. Identification of protective genes and their gene products
would be a major breakthrough.
One area of enormous potential, where basic biological,
epidemiological, and clinical research overlap, is the growing evidence
of the connection between vascular disease and Alzheimer's. We already
know about risk factors and effective prevention of vascular disease.
If we can better understand these connections, we may be on the path to
prevention of Alzheimer's as well. This is a particularly important
field of research for people of color, particularly African-Americans
and Hispanics, who are at higher risk of vascular disease.
Third, we need to improve the accuracy and ease of the diagnosis of
Alzheimer's disease. In academic medical centers such as Johns Hopkins,
we can achieve diagnostic accuracy of over 90 percent in many cases;
but that level of diagnostic accuracy is not realized in most clinical
settings. We know now that Alzheimer's disease has a long pre-clinical
phase, where the disease is damaging the brain, but when there are no
symptoms. At present we do not have the capability of diagnosing the
disease in these very early stages of its development. Yet, accurate
diagnosis is critical to effective treatment. In addition, the earlier
the diagnosis, the greater the effectiveness of treatments. Also,
diagnostic tests that are accurate may provide clues to the biology of
the illness. A wide range of diagnostic tests, including cutting edge
imaging techniques of the living brain, must be evaluated for this
purpose.
Fourth, we need to improve our understanding of the full range of
clinical manifestations of the disease. Recent research from our group
has found that as many
[[Page 41]]
as 90 percent of patients develop non-cognitive symptoms such as
depression, agitation, delusions, hallucinations, and distressing
behaviors. Most of these are a direct consequence of the brain damage
that the disease brings about. These are very troubling symptoms which
dramatically worsen the lives of patients, burden caregivers, and can
rapidly lead to early institutionalization. They also create some of
the most difficult challenges for residential facilities caring for
persons with dementia. Effective management of the symptoms can have a
wide range of benefits, for the patient, the family, and the formal
care system.
Fifth, we must substantially and immediately increase research into
the treatments of Alzheimer's disease. The most exciting possibility
comes from recent knowledge of the pre-clinical phase of Alzheimer's
disease. It turns out that the disease is damaging the brain for many
years before the onset of any symptoms. This offers an opportunity to
intervene and stop or slow it before symptoms occur. That is the key to
preventing Alzheimer's. One estimate indicates that if the disease
could be delayed by 5 years, the number of people suffering from the
disease would be reduced by half. To this end the National Institute of
Aging has initiated prevention studies to find out whether certain
medications can prevent the onset of Alzheimer's symptoms and other
Institutes are now joining NIA in that effort.
clinical studies at johns hopkins
At Johns Hopkins we are proud to have a leadership role in these
clinical studies. By way of example, I mention today the Alzheimer's
Disease Anti-inflammatory Prevention Trial or ADAPT in which I have a
leadership role. ADAPT is designed to find out whether healthy people
70 and older without memory symptoms, who have a family history of
Alzheimer's, are less likely to develop the disease if treated with
non-steroidal anti-inflammatory medications. This study has already
enrolled 600 people at six sites nationwide, one of which covers the
Baltimore-Washington area. We eventually plan to enroll a total of
2,400 participants over the next year-and-a-half. I would like to take
a moment to acknowledge the presence in the room my staff of the ADAPT-
Baltimore team who are working extremely hard in this critical study.
This, along with other studies investigating other potential treatments
or preventions such as estrogen, and ginkgo, are in the field
recruiting participants.
These sorts of studies are very expensive, each costing anywhere
between $15 and $25 million, but they are the only way we will find the
safe and effective way to stop Alzheimer's. Each study takes several
years to complete and involves scores of clinicians as well as
thousands of participants. The most promising studies involve healthy
seniors, or people with mild cognitive impairment, who must be enrolled
in sufficient numbers and over long enough periods of time for the
symptoms of Alzheimer's disease to emerge. These studies also require
substantial investment in outreach efforts to recruit and retain enough
study participants, including particularly participants from the
diverse ethnic and cultural backgrounds affected by Alzheimer's
disease.
The success of these studies depends not just on adequate funding,
but also on educating our seniors about the availability of these
studies and encouraging them to consider participation in them. That is
another reason, Senator Mikulski, why this hearing and your very
visible leadership is so important.
In addition to these efforts to find ways to prevent Alzheimer's,
laboratories at universities worldwide and several pharmaceutical
companies are working aggressively to find effective medications for
the treatment of Alzheimer's disease. Already we have several FDA-
approved treatments that have some benefits for disease symptoms.
Redoubling laboratory efforts at drug discovery and bringing potential
new medication treatments to clinical trials where we can assess their
safety and efficacy should be a major undertaking over the next few
years.
Equally important to finding ways to treat the cognitive symptoms,
we need to evaluate further treatments for the non-cognitive symptoms
of the disease. That will yield great benefits for patients and
families and for long term care providers. For example, in the
Depression in Alzheimer's Disease Study funded by the National
Institute of Mental Health, we have recently found that alleviation of
depression may delay the functional decline of the disease.
We must not limit ourselves to medication treatments since a
variety of other interventions greatly benefit patients. With our
affiliate, the Copper Ridge Institute, we are investigating the
benefits of several non-medication treatments for Alzheimer's patients
and their caregivers. Increased funding in this area, thus far
primarily supported by the Alzheimer's Association, will also be
necessary.
Finally in the area of treatment, we need to be sure that we can
deliver treatments where they are needed. I specifically want to
mention the long-term care environment. Currently, about one-quarter of
people with Alzheimer's disease, perhaps
[[Page 42]]
as many as one-third, live in residential care facilities. We have
known for many years that a very large portion of the nursing home
population has Alzheimer's or another dementia. We are only now finding
this out about assisted living. In our Maryland Assisted Living Study
(funded by the National Institute of Mental Health), our initial
findings indicate that as many as two-thirds of residents suffer from
memory disorders and that the detection and treatment of these
disorders in that environment is sorely lacking. It is critical that we
understand better the presence and course of Alzheimer's in assisted
living and that we deliver the most effective available treatments to
this population of patients as well.
In summary, and with my deep appreciation for your inviting me to
speak at this hearing, I would like to strongly emphasize that
Alzheimer's is a disease that affects us all at a personal, an
economic, and a societal level. Research is the key that will allow us
as society to manage this scourge. Redoubling efforts of research in
the laboratory, looking for risk factors and protective factors,
improving diagnosis, understanding of the course of the disease, and
developing a wide range of preventive and other treatments, with a
special emphasis on drug discovery, and improving care must be our
mission for the future.
Prepared Statement of Henrique S. Nyankale
Mr. Chairman, and Members of the Committee:
My name is Henrique Shadrack Nyankale, a resident of the State of
Maryland. I am a graduate student in Public Administration at George
Mason University, and an Intern of the Metropolitan Washington Counsel
of Governments in the Management and Operations Division in the Office
of the Corporation Counsel, in Washington, DC. I am pleased to have the
opportunity to present my testimony on the scourge of the Alzheimer's
disease. I speak for my family and for the 4 million innocent Americans
who found themselves victims of this disease. Remember our former
President Ronald Reagan, who after serving this Nation so well, finds
himself suffering from the scourge of this terrible disease called
Alzheimer's?
My interest in health policy advocacy began on the first week of
June, 2002, when I was taking a Health Policy course from the
Washington Health Policy Institute at the Law School of George Mason
University in Arlington Campus, Virginia. In discussing the devastating
effects of various diseases, the word Alzheimer's brought back bad
memories to me, because my father-in-law died from this disease at the
age of 65 in Johannesburg, South Africa. Before his death, our family
experienced first-hand the physical, emotional and financial hardships
of caring for him. We did not have access to any resources to help
improve his condition, nor did we get any support to help us care for
him at home. It was excruciating for us to watch his health deteriorate
before our eyes each day. When I came to the U.S., I thought I came to
heaven where no diseases penetrated. To my surprise, my health policy
research has uncovered the shocking truth about the ugliness of the
Alzheimer's disease. In my State--Maryland--alone, there were nearly
80,000 Americans who had been diagnosed with Alzheimer's disease in the
year 2000. This number is expected to jump to approximately 130,000
within the next 28 years, a 62.5 percent increase, according to the
U.S. Census Bureau's PPL-47 Report.
Mr. Chairman, nationwide, the statistics that show the growing
trend in the numbers of people who are, and will be diagnosed with
Alzheimer's disease in the next 28 years are: 1. Disheartening to the
coward, 2. Challenging to the courageous, and 3. Meaningless to the
unconcerned, who happily lays in the false lull of the Alzheimer's
silent killing tactics. Anyone interested in disproving my fear of--and
challenge from--this looming national catastrophe should refer to the
State-by-State current and predicted figures and percentages of
Americans with Alzheimer's from the U.S. Census Bureau's PPL-47 Report
developed by Paul R. Campbell, or find it at www.census.gov (and look
for PP-47). The above statement presents an opportunity to both the
Senate and House of Representatives. It is a boat of opportunity that
both Houses may choose to board and save the millions of Americans who
are being held hostage by the Alzheimer's or leave the Nation at the
mercy of this ominous, ravaging and unmanned health destroyer called
Alzheimer's disease.
The results of the 2001 studies by Harold Rubin
(www.therubins.com), have shown that: (1) Alzheimer's disease is the
most prevalent neurodegenerative disease, and is considered non-
reversible; (2) In 1999 alone, 44,536 Americans died of Alzheimer's
disease, making this disease the 8th leading cause of death nationwide,
as reported in the National Vital Statistics Reports (Vol. 49, No. 8).
According to the Centers for Disease Control, although Alzheimer's had
ranked 12th among the leading causes of death in 1998, the 1999 death
toll (indicated above) from Alzheimer's jumped in ranking from 12th to
the 8th position, surpassing the totals for other various major causes
of death, including motor vehicle accidents and cancer.
[[Page 43]]
The June 7, 2001 Report of the American Medical Association
indicates that Alzheimer's disease will reach epidemic proportions
within the next few decades. This report issued an ominous prediction
that the incidence of Alzheimer's disease will more than triple within
the next 30-40 years, as life expectancy continually increases and as
the 76 million baby boomers in the U.S. begin reaching age 65 in the
year 2011. By 2050, the number of Americans aged 65 and older will have
doubled from the current 35 million to 70 million people.
Currently, approximately 4 million Americans are suffering from
Alzheimer's disease, with annual costs approaching more than $100
billion. The Alzheimer's Association predicts that the current 4
million Alzheimer's figure will exponentially increase to 14 million by
the middle of this century, unless a cure or prevention is found.
The Alzheimer's Association also reports that more than 7 of 10
people with Alzheimer's live at home with almost 75 percent of the home
care provided by family and friends, which causes a great deal of
physical, emotional and financial hardship, not only to the victims,
but also to their loved ones who must devote extensive time and effort
to care for them. At the national level, the impact of Alzheimer's
disease on American businesses is alarming. Business costs associated
with this disease totaled $33 billion in 1998 and nearly doubled to $61
million in 2002. Currently, businesses spend over $36 billion annually
in lost productivity as employees are absent from work to provide care
to their loved ones with Alzheimer's disease.
Let us look back in history for the precursor to the current bill.
In 1982, the Alzheimer's Association established a Pilot Research Grant
Program. In the same year, U.S. Representative Bill Lowery introduced
legislation asking Congress to declare National Alzheimer's Disease
Week. Later that year, President Ronald Reagan signed legislation
designating Thanksgiving week as the National Alzheimer's Disease
Awareness Week.
In response to the 1983 Alzheimer's Association's launching of its
``National Program to Conquer Alzheimer's Disease'' presented before
the Select Committee on Aging, Congress allocated $22 million for a
government-wide effort to find the cause and cure for Alzheimer's
disease. President Ronald Reagan approved the creation of a task force
to oversee and coordinate scientific research on Alzheimer's disease. A
year later, and for the first time, Congress declared the month of
November the ``National Alzheimer's Disease Month.'' In 1984, in
recognition of the need to find cure for Alzheimer's disease, Congress
allocated $44 million to Alzheimer's research, and through the National
Institute on Aging, authorized support of the first five Alzheimer's
Disease Research Centers.
In 1986, Research grants were established to fund independent
Alzheimer's research projects. With the assistance of the Alzheimer's
Association, the National Institute on Aging and the Warner-Lambert
Pharmaceutical Company initiated a clinical trial to test the THA on
Alzheimer's patients. Since then, progress has been made in finding
drugs that can slow down or cure a few early symptoms of Alzheimer's.
To highlight the devastating nature of Alzheimer's disease, the U.S.
Office of Technology Assistance, published the first report on
Alzheimer's disease entitled ``Losing a Million Minds: Confronting the
Tragedy of Alzheimer's Disease and Other Dementias.'' But we still have
a long way to go in hunt for cure of Alzheimer's disease. In 1994,
former President Ronald Reagan announced that he has been diagnosed
with Alzheimer's disease.
Efforts towards establishing legislation on Alzheimer's picked up
momentum when in 1999, a bipartisan Congressional task force on
Alzheimer's disease was launched by Representatives Edward Markey (D-
MA) and Christopher Smith (R-NJ). The bill's momentum was generated by
Senators Barbara Mikulski and Edward Kennedy. Senator Mikulski
sponsored the bill and both she and Senator Kennedy introduced it to
the Committee on Health, Education, Labor and Pensions on March 21,
2002. Progress has been marked by the Committee's passing of the bill,
S. 2059, Alzheimer's Disease Research, Prevention and Care Act 2002.
The introduction of this bill in the Senate has sparked off similar
action in the House of Representatives where on June 25, 2002,
Representative Edward Markey (D-MA) introduced a similar bill--H.R.
4606--to the House Committee on Energy and Commerce where it is
awaiting the committee's consideration.
Looking at the progress this bill has made in both Houses, I am
encouraged. I am happy to hear that on Wednesday, June 26, 2002, the
Committee on Health, Education, Labor and Pensions passed S. 2059.
Advocates of this legislation are happy to hear that the bill has been
placed on the Senate Legislative Calendar under the General Orders,
Calendar No. 483, for consideration by the full Senate. My heartfelt
gratitude goes to Senators Mikulski and Kennedy for sponsoring this
bill. I also thank Senators Cochran (R-MS), Hutchinson (R-AR), Miller
(D-GA), and
[[Page 44]]
Dodd (D-T) who mustered courage and co-sponsored this bill. I also
thank all the other Senators who voted for it.
The purpose of the bill S. 2059, Alzheimer's Disease Research,
Prevention and Care Act of 2002, is to foster the development of
innovative models of care for persons with Alzheimer's disease and
their caregivers, particularly the underserved minority, rural and low-
income populations. It reauthorizes the Alzheimer's Disease
Demonstration Grant Program to assist individual States and calls for
establishing an Alzheimer's Disease Cooperative Study Group. It also
boosts Alzheimer's Disease Prevention Initiative by authorizing $1.5
billion for the National Institute on Aging. If it passes the full
Senate and Congress makes it into law, it will have tremendous impact
on healthcare delivery in our Nation. Its benefits will include
increasing the federal government's commitment to research on
preventing and finding a cure for Alzheimer's disease. The bill will
provide the most comprehensive legislation to date, expanding critical
programs and services, particularly to underserved communities.
On the other hand, if this bill is not made into law, a number of
grave consequences will result. First, as life expectancy continues to
increase and the 76 million baby boomers in our Nation begin reaching
age 65 by 2011, the number of Americans stricken with Alzheimer's
disease will increase exponentially, as predicted by experts. As a
result, the number of Alzheimer's victims requiring full-time care will
also increase tremendously. Billions of dollars will have to be spent
by millions of caregivers as they take care of their Alzheimer's-
stricken family members. Business operations will be affected, as
increasing numbers of employees will be forced to provide home care to
their loved ones who suffer from Alzheimer's disease, resulting in
increased employee absenteeism and lost productivity. Insurance costs
will be so high that many people will not be able to afford health and
long-term care for this debilitating disease.
I, therefore, urge you all to support the passage of the bill S.
2059, the Alzheimer's Disease Research, Prevention and Care Act of
2002. Please vote in favor of this bill and help those who are
skeptical realize the importance of continued research and support to
victims and families plagued with Alzheimer's disease. Research and
statistics make frightening predictions about the impact of Alzheimer's
disease on our society, beginning within the next 10 years and
skyrocketing within the next 30-40 years.
Since Alzheimer's disease attacks mostly the aging population, we
should remember that as more Americans (including many of us here
today) approach age 65 and beyond, the chances of being struck by
Alzheimer's increases dramatically. Let us not ``age in fear.'' Please
remember that we are now able to use the Hubble telescope to scan outer
space and see some never-before-seen formations of new stars, galaxies,
planets and supernovas. We, the Americans, are attempting to land
spacecrafts on comets. We are now able to walk in space and conduct
technical repairs in space. We do all of this in the hopes of improving
our lives in the future. Because we are able to do these things, we can
challenge ourselves, look into the future, and sense the bleak and
devastating impact of this dreaded disease and find ways and means to
conquer Alzheimer's disease. Let us use our knowledge of science and
medicine and advanced technology as the tactical weapons we can deploy
to defeat and conquer Alzheimer's disease, so that we may all ``age
gracefully'' and not ``in fear.''
Mr. Chairman, the future of the 4 million Americans with
Alzheimer's disease is in the hands of all the Senators who are
listening to this testimony or are reading it from whatever source.
They are the ones who have the power to vote for the passage of this
bill S. 2059 into an Alzheimer's legislation. Therefore, the longevity
of, or short-lived life of the 14 million Americans predicted to have
Alzheimer's disease by the year 2030, is also in the hands of the
Senators and Representatives. Your vote will show whether you are for
or against Alzheimer's victims living longer.
Past efforts should give us an impetus to surge forward and find
ways to detect, confine, control, and eliminate the Alzheimer's
disease. Please vote for the passage of the bill S. 2059, will you?
Thank you, Mr. Chairman.
[Whereupon, at 11:47 a.m., the hearing was adjourned.]