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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

(
(II)

COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

EDWARD M. KENNEDY, Massachusetts, Chairman

CHRISTOPHER J. DODD, Connecticut

TOM HARKIN, Iowa

BARBARA A. MIKULSKI, Maryland

JAMES M. JEFFORDS (I), Vermont

JEFF BINGAMAN, New Mexico

PAUL D. WELLSTONE, Minnesota

PATTY MURRAY, Washington

JACK REED, Rhode Island

JOHN EDWARDS, North Carolina

HILLARY RODHAM CLINTON, New York

JUDD GREGG, New Hampshire

BILL FRIST, Tennessee

MICHAEL B. ENZI, Wyoming

TIM HUTCHINSON, Arkansas

JOHN W. WARNER, Virginia

CHRISTOPHER S. BOND, Missouri

PAT ROBERTS, Kansas

SUSAN M. COLLINS, Maine

JEFF SESSIONS, Alabama

MIKE DeWINE, Ohio

J. MICHAEL MYERS, Staff Director and Chief Counsel

TOWNSEND LANGE MCNITT, Minority Staff Director

SUBCOMMITTEE ON AGING

BARBARA A. MIKULSKI, Maryland, Chairman

CHRISTOPHER J. DODD, Connecticut

PATTY MURRAY, Washington

JOHN EDWARDS, North Carolina

HILLARY RODHAM CLINTON, New York

TIM HUTCHINSON, Arkansas

JUDD GREGG, New Hampshire

JOHN W. WARNER, Virginia

PAT ROBERTS, Kansas

RHONDA RICHARDS, Staff Director

C. KATE LAMBREW HULL, Minority Staff Director
(III)

CONTENTS

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

(1)

ALZHEIMER’S RESEARCH AND CARE:

HELPING PATIENTS AND FAMILIES

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
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 betterequipped 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.
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.
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.
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 longterm 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
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
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 longterm 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.]
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
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-
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
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
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.
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-ofpocket, 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——
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.
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-
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.
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
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.
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.
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
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.
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.
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.
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 broaderbased 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-
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
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
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 openended, 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.
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?
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 powerof-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 parttime 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.
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,
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.]
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.
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.
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 consumerdirected 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-
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 microenterprise 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-
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
37

1S. 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. 2Kruman, 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. 3Wilson RS, Mendes de Leon CF, Barnes LL et al., ‘‘Participation in Cognitively Stimulating

Activities and Risk of Incident Alzheimer Disease,’’ JAMA 287: 742-748.

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 populationbased 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.

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
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, multisite 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.
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.
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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
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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-anda-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
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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.
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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 (RNJ). 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
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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.]

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