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89–018 PDF 2003

S. HRG. 108–130

ALZHEIMER’S DISEASE, 2003

HEARING

BEFORE A

SUBCOMMITTEE OF THE

COMMITTEE ON APPROPRIATIONS

UNITED STATES SENATE

ONE HUNDRED EIGHTH CONGRESS

FIRST SESSION

SPECIAL HEARING

APRIL 1, 2003—WASHINGTON, DC

Printed for the use of the Committee on Appropriations

(

Available via the World Wide Web: http://www.access.gpo.gov/congress/senate
(II)

COMMITTEE ON APPROPRIATIONS

TED STEVENS, Alaska, Chairman

THAD COCHRAN, Mississippi

ARLEN SPECTER, Pennsylvania

PETE V. DOMENICI, New Mexico

CHRISTOPHER S. BOND, Missouri

MITCH MCCONNELL, Kentucky

CONRAD BURNS, Montana

RICHARD C. SHELBY, Alabama

JUDD GREGG, New Hampshire

ROBERT F. BENNETT, Utah

BEN NIGHTHORSE CAMPBELL, Colorado

LARRY CRAIG, Idaho

KAY BAILEY HUTCHISON, Texas

MIKE DEWINE, Ohio

SAM BROWNBACK, Kansas

ROBERT C. BYRD, West Virginia

DANIEL K. INOUYE, Hawaii

ERNEST F. HOLLINGS, South Carolina

PATRICK J. LEAHY, Vermont

TOM HARKIN, Iowa

BARBARA A. MIKULSKI, Maryland

HARRY REID, Nevada

HERB KOHL, Wisconsin

PATTY MURRAY, Washington

BYRON L. DORGAN, North Dakota

DIANNE FEINSTEIN, California

RICHARD J. DURBIN, Illinois

TIM JOHNSON, South Dakota

MARY L. LANDRIEU, Louisiana

JAMES W. MORHARD, Staff Director

LISA SUTHERLAND, Deputy Staff Director

TERRENCE E. SAUVAIN, Minority Staff Director

SUBCOMMITTEE ON DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND

EDUCATION, AND RELATED AGENCIES

ARLEN SPECTER, Pennsylvania, Chairman

THAD COCHRAN, Mississippi

JUDD GREGG, New Hampshire

LARRY CRAIG, Idaho

KAY BAILEY HUTCHISON, Texas

TED STEVENS, Alaska

MIKE DEWINE, Ohio

RICHARD C. SHELBY, Alabama

TOM HARKIN, Iowa

ERNEST F. HOLLINGS, South Carolina

DANIEL K. INOUYE, Hawaii

HARRY REID, Nevada

HERB KOHL, Wisconsin

PATTY MURRAY, Washington

MARY L. LANDRIEU, Louisiana

Professional Staff

BETTILOU TAYLOR

JIM SOURWINE

MARK LAISCH

SUDIP SHRIKANT PARIKH

CANDICE ROGERS

ELLEN MURRAY (Minority)

ERIK FATEMI (Minority)

ADRIENNE HALLETT (Minority)

Administrative Support

CAROLE GEAGLEY
(III)

CONTENTS

Page

Opening statement of Senator Arlen Specter ........................................................ 1

Opening statement of Senator Larry E. Craig ...................................................... 2

Statement of Richard J. Hodes, M.D., Director, National Institute on Aging,

National Institutes of Health, Department of Health and Human Services .. 3

Prepared statement .......................................................................................... 5

Statement of Marilyn A. Albert, Ph.D., director, Division of Cognitive Neuroscience, Department of Neurology; co-director of the Alzheimer’s Disease

Center, Johns Hopkins University School of Medicine; and Chair, Medical

and Scientific Advisory committee, Alzheimer’s Association ............................ 8

Prepared statement .......................................................................................... 10

Opening statement of Senator Tom Harkin .......................................................... 12

Statement of Sheldon Goldberg, president and CEO, Alzheimer’s Association ........................................................................................................................ 13

Prepared statement .......................................................................................... 15

Opening statement of Senator Patty Murray ........................................................ 23

Statement of Mary Jean and Dwayne Uptegraph, Dubuque, IA ......................... 26

Prepared statement .......................................................................................... 28

Statement of Donald Kurtz, Blue Bell, PA ............................................................ 29

Prepared statement .......................................................................................... 31

Statement of Mike Martz, coach, St. Louis Rams ................................................. 32

Prepared statement of Mike Martz ................................................................. 35

Statement of Terrell Owens, wide receiver, San Francisco 49ers ....................... 36

Prepared statement .......................................................................................... 37

Prepared statement of the Center for Senior Health, Jefferson College of

Health Professions, Thomas Jefferson University ............................................. 40

(1)

ALZHEIMER’S DISEASE, 2003

TUESDAY, APRIL 1, 2003

U.S. SENATE,

SUBCOMMITTEE ON LABOR, HEALTH AND HUMAN

SERVICES, AND EDUCATION, AND RELATED AGENCIES,

COMMITTEE ON APPROPRIATIONS,

Washington, DC.

The subcommittee met at 9:35 a.m., in room SH–216, Hart Senate Office Building, Hon. Arlen Specter (chairman) presiding.

Present: Senators Specter, Craig, Harkin, and Murray.

OPENING STATEMENT OF SENATOR ARLEN SPECTER

Senator SPECTER. Good morning, ladies and gentlemen. The Appropriations Subcommittee on Labor, Health and Human Services,

and Education will now proceed. This hearing coincides with the

15th Alzheimer’s Association Public Policy Forum, and we will kick

off the organization’s Capitol Hill day today. An estimated 400 family caregivers and volunteers will attend.

The subcommittee began hearings on Alzheimer’s back in 1980,

and it has been virtually an annual affair since 1998. There are approximately 4 million Americans with Alzheimer’s disease, costing

the economy over $100 billion annually. As the baby boom generation ages, scientists predict the number of individuals with Alzheimer’s will jump to 6 million by the end of this decade and as

high as 14 million by mid-century, when the annual cost will be

some $375 million a year.

The ravages of Alzheimer’s are known only too well by the families of those who suffer from Alzheimer’s. The illness came into

sharp national focus when President Reagan was diagnosed with

Alzheimer’s and then made a public disclosure, and we have all

watched what has happened with President Reagan since he left

the White House in 1989, and we have seen the loving care from

Mrs. Reagan, and that has brought a national awareness as to the

enormous problems with Alzheimer’s.

The funding for Alzheimer’s has increased very, very materially

from $308 million in fiscal year 1996 to $663 million, which is our

request for this year. This increase in funding has been facilitated

by an enormous increase in the funding for the National Institutes

of Health generally. Senator Tom Harkin, Democrat of Iowa, and

I have chaired this committee alternatively. You might not have

noticed this, but we change parties every now and then in Washington.

We have passed the gavel in what we call a seamless exchange.

Our view is that there is too much partisan politics in Washington
2

generally. People are sick and tired in America of political bickering, and it absolutely has no place when you are dealing with the

funding of health care, so that in the recent years the funding for

the National Institutes of Health has been increased from $12 billion to more than $27 billion. We have more than doubled the NIH

funding, and that has had the effect of providing tremendous research assistance for ravaging diseases like Parkinson’s and heart

disease and cancer, Alzheimer’s, and many, many others.

We are facing certain controversies on the issue of stem cells, for

example, which burst upon the scene in late 1998. Stem cells come

from embryos, and have proved to have enormous potential to combat ailments like Alzheimer’s. Recently, there has been a charge of

cloning, so-called therapeutic cloning, or what is really nuclear

transplantation.

Without getting too deeply involved in that subject, suffice it to

say today that it is very important for the 128 million people who

are afflicted with ailments either themselves or by their families

should be aware of the need for public support for funding for the

National Institutes of Health, and for public support for research

on stem cells and nuclear transplantation.

The House of Representatives has passed legislation which criminalizes medical research in what I consider to be very ill-advised

legislation. More than 40 Nobel laureates have come forward asking that there be freedom for medical research, and it is important

for you, ladies and gentlemen—you have first-hand knowledge of

this debilitating disease—to be aware of this so that you can be activists in your communities, and you can advise your Members of

the Senate and House of Representatives on a national basis what

you would like to see done. That is the essence of representative

democracy.

We have been joined by our distinguished colleague, Senator

Larry Craig from Idaho. Senator Craig, would you care to make an

opening comment?

OPENING STATEMENT OF SENATOR LARRY E. CRAIG

Senator CRAIG. Mr. Chairman, I will be brief. You have an outstanding group of panelists this morning, and let me thank you for

holding the hearing and your advocacy for some of these issues

that are so critically important.

I am here today as a member of the subcommittee. I am also

here as chairman of the Special Committee on Aging in the Senate,

and I am the adult child of aging parents, and I feel very fortunate

that I have not had to face Alzheimer’s directly, but indirectly, certainly with other members of my family, with friends and associates. It is very real, and all that you said, Mr. Chairman, is certainly true.

Alzheimer’s disease can exhaust the human resources, cause

physical and emotional hardships for caregivers and is a tremendous financial burden on families, and the tragic story goes on and

on. That is why we are here today, to take the testimony of these

experts and to see what we can do to continue to add to the research that is going on.

Funding for biomedical research for all diseases is a high priority, and this chairman has made it his priority, and Mr. Chair-
3

man, I thank you for doing so, because it is making a difference,

and all of these advocates who are here today are making a difference, along with that research.

New discoveries obviously return values to the patient and their

families, and the story goes on and on. This is a challenge that we

are facing. It is a challenge that we will meet. It is a crisis in our

community that we hope to solve with the necessary research and

work, so thank you very much this morning, Mr. Chairman. I look

forward to the testimony of these experts.

Senator SPECTER. Thank you very much, Senator Craig.

STATEMENT OF RICHARD J. HODES, M.D., DIRECTOR, NATIONAL INSTITUTE ON AGING, NATIONAL INSTITUTES OF HEALTH, DEPARTMENT OF HEALTH AND HUMAN SERVICES

Senator SPECTER. Our first witness is Dr. Richard J. Hodes, who

has served as the Director of the National Institute on Aging since

1993. He has held several other key posts at NIH, including clinical

investigator at the National Cancer Institute, program coordinator

for the U.S.-Japan cooperative cancer research program, and deputy chief of the Cancer Institute’s Immunology Branch, a graduate

of Yale, M.D. from Harvard Medical School.

Thank you for joining us, Dr. Hodes, and we look forward to your

testimony. Our practice is to limit the testimony of each witness to

5 minutes. I think it is worth noting that there was a memorial

service for Ambassador Annenberg recently, and our speakers included former President Gerald Ford and Secretary of State Colin

Powell. Every speaker was limited to 3 minutes, including myself.

So I want you to know at the outset how generous 5 minutes is.

Dr. Hodes, we look forward to your testimony.

Dr. HODES. Thank you, Senator Specter, members of the committee, and thank you for this opportunity to share with you some

of the progress being made to understand, diagnose, and treat Alzheimer’s disease.

As noted, Alzheimer’s disease is a tragic condition that affects

those with the disease as well as family members, loved ones, the

health care system, and in fact, the entire society. It is a burden

that threatens to increase as the American population ages over

the coming decades. Although this remains a critical public health

issue, it does so in the context of dramatic improvements in our understanding of the disease, some of which I would like to share

with you today.

Remarkably, as recently as 15 years ago, we knew nothing about

the genes that can predispose to Alzheimer’s disease, and very little about the underlying mechanisms. As recently as 10 years ago,

we had no animal models in which to study the disease, 5 years

ago there were no ongoing prevention studies and very little ability

to identify individuals at high risk for the disease. As recently as

2 years ago there was no effective way in which to study the interactions of the plaques and tangles, the brain lesions that are characteristic of the disease.

All of these advances have occurred. We now, over the past year

alone, have seen dramatic new progress. One of the basic

underpinnings in our understanding of the disease is our ability to

understand risk factors, both environmental and genetic. It is notable that we have now identified three genes which can cause Alz-
4

heimer’s in early onset familial disease, as well as identifying,

ApoE, an important risk factor gene for the more common late

onset disease.

Notably, investigators are now closing in on identification of several additional genes, including those which appear on chromosomes 9, 10, and 12. To accelerate progress in this area we are

now initiating an Alzheimer’s disease genetics initiative collaboratively among institutes at NIH which will accumulate the contributions of genetic materials and contributions from centers

across the country and around the world from population-based

studies, and family studies, as well as case control studies. We will

accumulate these in a database which importantly will be available

to all investigators so that the power of studies to identify genes

and targets for intervention will be increased dramatically.

In addition, new refinements and advances in neuroimaging have

been extraordinary of late. There have been studies with techniques such as magnetic resonance imaging (MRI), which have now

shown the ability to detect defects in the brains before the lesions

of plaques and tangles can be seen. This is important because now

we have the ability to detect changes before symptoms occur, at a

time when intervention may be most effective.

New techniques, which not only can study structure but also

function of areas of the brain, such as positron emission tomography (PET), show promise not only for early diagnosis, but being

able to track the cause and progression of disease and most importantly, perhaps, to be able to track the effectiveness of interventions by neuroimaging methodologies, and to facilitate and accelerate developments in this area. We are currently coordinating the

development of a neuroimaging initiative which notably will involve collaboration not only with NIA and multiple NIH institutes,

but with the FDA, with the Alzheimer’s Association, and with

pharmaceutical as well as imaging industries to try to develop

those techniques which can best monitor disease and our future assessment of therapies for prevention as well as treatment.

From imaging and laboratory studies, we are rapidly accumulating new strategies, new strategies for attacking the underlying

processes that are responsible for Alzheimer’s disease. These include immune approaches. These include the identification of new

molecules that bind specifically to the lesions of Alzheimer’s disease and can help to eradicate them. As noted, they involve the

promise of stem cell research, which does have the capability and

concept of providing neurons to replace those damaged or destroyed

during the disease.

PREPARED STATEMENT

We are currently supporting 18 clinical trials of Alzheimer’s disease, seven of which are large scale prevention studies. The unprecedented advances that we have had in understanding the underlying mechanism of the disease will in the next generation create

new opportunities, new targets, and new strategies for interventions.

I thank you for the opportunity to share this progress with you.

I will be happy to address any questions that you may have.

[The statement follows:]
5

1 Hebert LE, Beckett LA, Scherr PA, and Evans DA. Annual Incidence of Alzheimer Disease

in the United States Projected to the Years 2000 Through 2050. Alzheimer Dis. Assoc. Disord.

15: 169–173, 2001.

PREPARED STATEMENT OF DR. RICHARD J. HODES

Senator Specter and Members of the Committee: 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. Richard Hodes, Director of the National Institute on

Aging (NIA), the lead federal agency for Alzheimer’s disease research. I am delighted to be here this morning to tell you about the progress we are making toward

understanding, treating, and preventing AD.

As you know, AD is a devastating condition with a profound impact on individuals, families, the health care system, and society as a whole. According to data

from the Alzheimer’s Association, approximately 4 million Americans are currently

battling AD, with annual costs estimated to exceed $100 billion. Moreover, the rapid

aging of the American population threatens to increase this burden significantly in

the coming decades: Demographic studies suggest that if current trends hold, the

annual number of incident cases of AD will begin a sharp increase around the year

2030, when all the baby boomers (born between 1946 and 1964) will be over age

65. By the year 2050, the number of Americans with AD could double.1

But these numbers, however stark, do not tell the whole story. Although AD remains a major public health issue for the United States, we have made, and are

continuing to make, dramatic gains in our ability to understand and diagnose AD

that offer us the hope of preventing and treating the disease, reversing the current

trends.

Fifteen years ago, we did not know any of the genes that cause AD, and we had

only a limited understanding of the biological pathways that are involved in the development of brain pathology. Ten years ago, we could not model the disease in animals. Five years ago, we were not funding any prevention trials and had no way

of identifying persons at high risk for the disease. And as recently as two years ago,

we did not understand anything about how AD’s characteristic amyloid plaques and

neurofibrillary tangles in the brain relate to each other.

Today, we have accomplished all of these things through a far-ranging and innovative program of scientific endeavor. And in the past year alone, we have made

a number of important discoveries.

A crucial underpinning of our efforts to develop interventions that delay or even

prevent clinical manifestation of AD is the understanding of the events leading up

to the disease’s appearance, including risk factors. Through laboratory and population-based research, we have identified a number of risk factors for AD, including

genetic and lifestyle factors. We already know three major genes for early-onset disease and have identified a major risk factor gene for late onset disease, ApoE4. Recent findings are enabling us to close in on several others, thought to be on chromosomes 9, 10, and 12.

In order to move the field of Alzheimer’s disease genetics forward more rapidly,

the NIA has developed an Alzheimer’s Disease Genetics Initiative. A major component of this initiative is the collection of family-based, population-based, and casecontrol sample sets. To facilitate collection of the family-based sample set, administrative supplements were awarded last year to ten Alzheimer’s Centers to identify

families with two or more affected members and to collect blood and information

from them for archiving in the National Cell Repository for Alzheimer’s Disease

(NCRAD). DNA and information on these individuals will be made available, with

appropriate controls to ensure participant confidentiality, to the research community. The information gained through this initiative will be invaluable to the discovery of AD-related genes, which will in turn help us identify pathways affecting

AD development or progression.

In addition to genetic and molecular risk factors, studies funded by a number of

NIH Institutes are revealing the possible impact of diseases such as cardiovascular

disease and diabetes on AD-related dementia in later life. Researchers in one study

found that persons in a Latino population had a 7–8 fold increased risk of dementia

if they had both type 2 diabetes and stroke compared to persons who had neither,

suggesting that improved interventions to prevent diabetes and stroke may prevent

dementia in substantial numbers of people. Results from the ongoing Cardiovascular

Health Cognition Study demonstrated that measures of cognition, ApoE4 status,

and certain results on magnetic resonance imaging (MRI) of the brain are together

strongly predictive of both dementia and AD.

In fact, the development and refinement of powerful imaging techniques that target anatomical, molecular, and functional processes in the brain is giving us an im-
6

proved ability to identify people who are at very high risk for AD, as well as a greater understanding of the disease’s pathology. For example, in a recent mouse study,

researchers found that changes in brain structure can be detected by magnetic resonance microscopy before amyloid plaques appear in the brain, suggesting that subtle

pathologic changes are occurring long before signs and symptoms of the disease appear. Other investigators have found that metabolic changes in certain parts of the

brain, as detected through positron emission tomography, show potential for predicting future decline in cognitively normal adults. Researchers are also working to

improve our ability to image plaques and tangles in vivo, which will allow us to diagnose the disease with greater accuracy and more closely follow its progression and

response to therapies.

These techniques, along with improved neuropsychological tests, are enabling us

to diagnose AD early, while the patient can still take an active role in decision-making. This knowledge, in turn, may allow early intervention long before the disease

affects the patient’s level of functioning.

An Alzheimer’s Disease (AD) Neuroimaging Initiative is under development as a

study of normal aging, mild cognitive impairment (frequently a precursor of AD),

and early AD, using serial magnetic resonance imaging and positron emission tomography scans, clinical and neuropsychological data, and collections of biological

fluids and cells for other potential biomarkers. The Initiative is being planned with

participation by NIA/NIH, the Food and Drug Administration, academic investigators, the pharmaceutical industry, the imaging equipment industry, the Alzheimer’s

Association, and the Institute for the Study of Aging. It is anticipated that information gained from this initiative will help us identify potential uses of imaging and

other surrogate markers for following progression of cognitive decline and dementia,

and for assessing the effectiveness of interventions to prevent or treat AD.

As we learn more about AD’s pathology through imaging and laboratory studies,

we are identifying a number of novel molecular characteristics that may prove to

be targets for treating the disease or preventing it altogether. In this endeavor, animal models—particularly transgenic mice, but also worms, dogs, and even nonhuman primates—are invaluable research resources for studying age-related and

disease-related changes in the brain and for testing promising interventions.

Two new research findings suggest that boosting normal, protective processes in

the brain might help degrade or prevent the development of amyloid plaques. In one

study, researchers found that gene transfer into mice of the enzyme neprilysin may

help clear the protein that forms amyloid plaques in humans. In the other, researchers found that brain cells called astrocytes can degrade the beta amyloid peptide in

cell cultures, suggesting that harnessing the protective function of these cells may

be a strategy for AD prevention and treatment.

Another potential preventive strategy involves enhancing the function of chaperone proteins, which aid in proper protein folding. In various cellular models, researchers have noted an inverse relationship between levels of a heat shock protein

(a chaperone) and neurofibrillary tangles in the brain, suggesting that up-regulation

of molecular chaperones may suppress formation of neurofibrillary tangles. More research is needed to assess the clinical significance of these findings.

Researchers are also exploring immune approaches that target AD. In collaboration with the National Institute of Neurological Disorders and Stroke, NIA has

issued a Request for Applications (RFA) and funded a number of studies to better

understand the science underlying immunologic approaches. An encouraging outcome of this research is the observation that antibodies in the blood may draw soluble amyloid out of the brain, perhaps even reducing the size of plaques as well. The

newest results suggest that other compounds that bind to amyloid may have the

same effect. Whether these results in animal studies can be successfully applied to

humans has not yet been evaluated.

Human stem cells, with their unique capacity to regenerate and give rise to many

tissue types, are of particular interest in AD research because of their potential ability to generate new cells that could renew damaged brain tissue, replace dying neurons, or enhance the ability of the brain to respond to age-related impairments. Recent findings suggest that both human embryonic stem cells (hES), which can give

rise to many cell types, and ‘‘adult’’ stem cells, which develop into specific cell types,

show promise for the eventual treatment of AD and other neurodegenerative conditions. Researchers have recently developed a method for inducing hES cells to differentiate into neurons. These newly-derived cells exhibit the properties of cells ordinarily found in the brain and central nervous system, suggesting that hES cells

could provide a source for neural progenitor cells and mature neurons for therapeutic use. Investigators have also found that in the adult hippocampus, neural

stem cells can give rise to functional neurons that can integrate effectively into existing neural circuits.
7

In addition to interventions at the molecular level, scientists are increasingly enthusiastic about the role of behavioral variables, such as 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 explored whether three

specific interventions (on memory, reasoning, and speed of processing) could maintain or improve functioning in unimpaired, community-dwelling older adults. The investigators found that the interventions helped the participants to perform better

on multiple measures of the specific cognitive ability for which they were trained,

and that these improvements persisted for two years after training. Additional follow-up of participants is planned.

Research has also suggested that the use of several common, over-the-counter

compounds may be associated with reduced risk of AD and dementia. For example,

epidemiologic studies show a correlation between long-term use of non-steroidal

anti-inflammatory drugs (NSAIDs) such as ibuprofen and a reduced risk of developing AD, and recent findings in animal models suggest the possibility that some

newer anti-inflammatories may reduce inflammation as well as directly reduce the

formation of amyloid. Likewise, researchers are developing and testing new antioxidant drugs that ameliorate or prevent brain cell damage or death caused by

oxidative stress, a form of cell damage caused by molecules generated during normal

energy metabolism. Chronic oxidative stress may be a contributing factor in

neurodegenerative disorders, including AD. In studies of dogs and rats, diets rich

in antioxidants resulted in a significant improvement in the ability of older animals

to acquire progressively more difficult learning tasks. These results suggest that

oxidative damage impairs cognitive function and that antioxidant treatment can result in significant improvements.

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 the disease altogether. Other intervention trials

are assessing the effects of various compounds on the behavioral symptoms (agitation, aggression, and sleep disorders) of people with AD. The design and implementation of all of these clinical trials will be carried out in the context of the NIH

Roadmap initiative to enhance clinical research infrastructure and methodology.

Another very important area of research involves easing the burden on caregivers

of AD patients. Most Americans with AD are cared for at home by an adult child

or in-law, a spouse, another relative, or a friend. For this reason, the AD ‘‘patient’’

is, in a sense, not only the person with the disease, but the entire family unit. The

NIA’s REACH Project (Resources for Enhancing Alzheimer’s Caregiver Health), a

large, multi-site intervention study aimed at family caregivers of AD patients, was

designed to characterize and test promising interventions for enhancing family

caregiving. Nine different social and behavioral interventions were tested, and investigators found that the combined effect of interventions alleviated caregiver burden, and that interventions that enhanced caregiver behavioral skills reduced depression. The second phase of the study, REACH II, combines elements of the diverse interventions tested in REACH into a single multi-component psychosocial behavioral intervention and is ongoing.

The goal of AD research is ultimately to identify the most effective strategies for

preventing and treating AD in diverse populations. Recent research findings have

provided an unprecedented base of knowledge upon which to design these strategies.

Research on AD genetics, on the basic cellular biology of AD-related pathways, the

changes taking place in the brains of persons with mild cognitive impairment and

early AD, animal models, and hints of possible risk and protective factors from epidemiology studies, have all contributed to identification of new clinical opportunities. These diverse and productive research approaches will continue to drive the design of innovative pilot studies and full scale clinical trials that are most likely to

yield effective strategies for preventing and treating 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 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.

Senator SPECTER. Thank you very much, Dr. Hodes. Before proceeding to the first round of questions, I would like to call two
8

members of the second panel. Mr. Sheldon Goldberg, if you will

step forward, and also Dr. Marilyn Albert.

STATEMENT OF MARILYN A. ALBERT, Ph.D., DIRECTOR, DIVISION OF

COGNITIVE NEUROSCIENCE, DEPARTMENT OF NEUROLOGY; CODIRECTOR OF THE ALZHEIMER’S DISEASE CENTER, JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE; AND CHAIR, MEDICAL

AND SCIENTIFIC ADVISORY COMMITTEE, ALZHEIMER’S ASSOCIATION

Senator SPECTER. Dr. Albert is the director of the Division of

Cognitive Neuroscience at the Department of Neurology, and co-director of the Alzheimer’s Disease Center at the Johns Hopkins

School of Medicine, and also the chair of the Medical and Scientific

Advisory Committee of the Alzheimer’s Association, receiving her

doctorate from McGill University.

Thank you for joining us, Dr. Albert, and we look forward to your

testimony.

Dr. ALBERT. It is a great pleasure to be here today, and thank

you for inviting me back to talk to you about the progress and the

promise of Alzheimer’s disease research.

I’ve submitted in writing a document outlining five points related

to strategy that we think will enable us to achieve effective treatments and prevention of Alzheimer’s disease in the future, but in

the short time that I have this morning I wanted to emphasize just

a few points.

First, I wanted to say that I believe my colleagues and I in the

scientific community in the United States and around the world

really believe that we are at a crossroads with respect to the treatment of Alzheimer’s disease. Because of previous investment in

Alzheimer’s disease research there is now a consensus about the

mechanism of the underlying causes of the disease. Because of previous investment in research there is now the technological capability to attack the problem with a wide range of tools, and because

of previous investment there is a cadre of clinical and basic scientists around the world who are willing to devote their careers to

solving the problem.

If funding remains stable, which seems a real possibility, we believe that this will limit our ability to solve the problems that we

see before us. As it now turns out, Alzheimer’s disease is a much

more complex problem than any of us ever anticipated, requiring

novel approaches, and in particular what now seems to be clear is

that there is a need for interdisciplinary, collaborative, large-scale

efforts in solving several areas of problems, in addition to the funding that already exists, for providing funding to individual scientists and individual laboratories, and I would like to just give

you a few brief examples.

The first has to do with the animal models that Dr. Hodes just

referred to. As you know, we need good animal models to understand the disease better and to test prospective treatments, and it

is clear that the animal models we have are not sufficient. We need

to have better animal models. They need to be more widely available, because many are now protected by patents, and so limited

in their distribution.

There has already been a consortium that has been developed

with the Alzheimer’s Association, several foundations and, in fact,
9

pharmaceutical companies in an effort to develop better animal

models, to raise them, to distribute them, but it is clear that we

need more funding for this effort.

With respect to the genetic studies that Dr. Hodes just mentioned, it is now clear that Alzheimer’s disease is genetically very

complex. As you heard, there are now four genes that have been

identified with respect to Alzheimer’s disease. We believe that

there are at least an additional four to seven more to be found.

Years ago, when it was clear that this was a complex disease genetically, there was a consortium established of three medical centers. They created a database that was nationally available. There

were 500 subjects in the database with clinical information and

DNA, and it is now clear that that is not enough, so we need considerable more funding in this area.

With respect to clinical trials, as Dr. Hodes just mentioned, there

are many promising agents available. The pharmaceutical companies, of course, are testing the drugs that they developed, but we

need more testing of drugs that are under patent protection, and

particularly with regard to prevention of Alzheimer’s disease.

Finally, with respect to disease markers that Dr. Hodes just

mentioned, it seems very clear that in order to be better in conducting the clinical trials that we need to conduct, we need better

markers of disease and of disease progression.

The real fear right now among the scientists is that when we

have effective treatments it might, in fact, take too long to find out

that they are in our possession, that the standard methods that we

have now for identifying improvement are not going to show us

that there are changes that are really taking place, and that is why

we need these new imaging methods and other biomarkers to better identify that we have effective treatments, and to monitor those

treatments over time, and the imaging initiative that Dr. Hodes referred to is the method that we think will help the effort along, but

of course it is very costly.

So from just these four examples, I think that you can see why

so many of us believe that a collaborative, integrated, large-scale

model of science is needed now, in addition to the usual effort that

we are accustomed to of funding individual scientists and individual laboratories. I am sure you know that scientists tend to be

individualists, so many of them have taken a long time to recognize

that this is, in fact, what is needed, but recognize it they do, and

as I have just mentioned, we are talking about a lot of money, $25

million for each clinical trial, $60 million for the imaging initiative.

PREPARED STATEMENT

I know, however, that this pales in comparison to the $60 billion

that we spend on Medicare and Medicaid each year in taking care

of Alzheimer patients, and I also know that if we have that money

we could use it wisely, so we are asking you to increase the funding

for Alzheimer’s disease research. We are promising you that if you

give it to us we will get the job done.

Thank you very much.

[The statement follows:]
10

PREPARED STATEMENT OF DR. MARILYN A. ALBERT

Thank you Senators Spector and Harkin for inviting me back to talk with you

about the excitement and the promise of Alzheimer’s research. Your consistent support of funding for Alzheimer research, and your endorsement of the $1 billion goal,

is an indication of your own confidence in the Alzheimer research community. I am

pleased to appear before you to report that your confidence is well placed.

Those of us in the scientific community who have been working on the problem

of Alzheimer’s disease for a long time are astounded at the extraordinary progress

that has been made in the past two decades, and especially the tremendous leaps

forward in just these past few years. That is the result of the investment you have

already made and we thank you for your leadership and your persistence.

We know that you are under enormous budget pressures—with the economic slowdown, rising budget deficits, and the costs associated with the conflict in Iraq. We

understand that Congress will have to make very hard choices among compelling

needs and competing priorities. And, we understand that with the completion of the

effort to double funding for the National Institutes of Health, requests for additional

support for medical research will receive extra scrutiny.

Other witnesses this morning are providing compelling personal and economic evidence of the urgent need to find answers to Alzheimer’s disease. I can tell you that

the scientific reasons for investing more in Alzheimer research now are equally compelling. And I can assure you that every additional dollar you can direct to that research will be well spent as part of a carefully constructed strategy designed to get

us to the answers faster, better, and in the long run, cheaper.

Our strategy for conquering Alzheimer’s has shifted over the years and has become more ambitious, as we have learned more about the basic mechanisms of the

disease and as new scientific tools like imaging and genetics have become available

to us. We now think about Alzheimer’s disease in three distinct stages.

When I started my work on Alzheimer’s disease more than 20 years ago, and until

fairly recently, we were focused on what we now consider to be the third stage—

actual clinical dementia. At this point, the symptoms of Alzheimer’s disease are

clear and the disease is already taking its toll on the person’s ability to function

independently. Our goal at this stage is to treat those symptoms and slow decline,

to help people live and function well in the community as long as possible. That is

still part of our strategy. But it is probably not the way we are going to get the

disease under control and avoid the huge costs to Medicare and Medicaid.

We now recognize that we need to attack Alzheimer’s disease at much earlier

stages, and we are pushing the science back to these stages now. There is middle

prodromal stage, what some refer to as mild cognitive impairment, or ‘‘MCI.’’ At this

stage, there are early signs that the disease is evolving, but the patient does not

meet clinical critieria for dementia. Our goal here is to slow the progression of the

disease process—to postpone and hopefully to prevent full-blown Alzheimer’s disease.

Ultimately, our goal is to reach back to an even earlier point—normal aging—to

prevent the disease process from ever starting.

There are five critical components to this Alzheimer prevention strategy, all of

which will require your additional financial support.

First, we have to maintain the pipeline of basic scientific discovery to develop the

potential targets for treatment and prevention. At current funding levels, the NIH

can support only about one in four qualified proposals that have been successfully

peer-reviewed. It would take an additional $29 million for the National Institute on

Aging to fund another 10 percent of the most promising proposals it receives.

Second, we need to develop better animal models of Alzheimer’s that will more

closely parallel the disease in humans. Right now, basic science is developing targets for potential treatment and prevention faster than we can possibly test them

in full-scale clinical trials. Animal models allow us to screen for the most promising

targets. It is expensive to develop and maintain these animal models and to put

them in the hands of the general scientific community—it could take as much as

$50 million to do that. But once the models are available, we will be able to test

a potential new treatment at a fraction of the cost of human trials—a faster, cheaper way to narrow the targets for prevention and to speed effective drugs to market.

Third, we must test the most promising potential targets for prevention in largescale clinical trials, in persons who are cognitively normal and in those in the

prodromal stage. That is the only way to figure out whether early use of any of

these compounds can have a protective effect. In the absence of a way to detect disease and follow its progress at these early stages, the only way to determine whether a compound works is to enroll large numbers of people in these trials and to follow them for a long enough period of time, three to five years, to see what happens.
11

Each of these prevention trials will cost $25 to $30 million, and we need to start

them as rapidly as targets are identified.

The National Institute on Aging is leading efforts to try to find a way to do these

prevention trials faster and at less cost. Which brings me to the fourth part of the

strategy—the search for biomarkers that may allow us to see evidence of disease

and to monitor its progress without having to wait for evidence from cognitive testing. That is the goal of NIA’s proposed imaging initiative. It would serve two purposes: first, to find better treatments faster and second, to provide accurate earlier

diagnosis. It is the first of these that holds the most immediate and exciting promise. In current prevention trials, we have to follow people for years until cognitive

testing can demonstrate whether the compound being tested is actually having any

preventive effect. If we can use imaging techniques to monitor changes in the brain

that indicate progression of disease, then we will be able to determine whether a

compound is having a preventive effect within a matter of months. This will substantially reduce the size, the length and the cost of prevention trials. And it will

make an enormous difference in the speed with which companies can bring effective

treatments to the market place—which is why they are so interested in partnering

with NIA on this initiative. A second potential outcome of this imaging initiative

will be development of effective techniques that will allow accurate early diagnosis

of Alzheimer’s so that, once we have effective preventions, they can be started in

patients who need them soon enough to make a difference. The imaging initiative

will cost an estimated $60 million. While NIA is working hard to enlist industry as

investors in this initiative, it will take additional funds from Congress to implement

it fully.

Fifth, we need to identify additional risk factors for Alzheimer’s so that once we

find the compounds that will work to prevent disease, we can target them to those

who need and will benefit from them. We are now quite certain that Alzheimer’s

disease is caused by some combination of genetic and environmental risk factors. We

have discovered some of those genetic risk factors, but there are undoubtedly more.

NIA has developed a ground-breaking genetics initiative that is designed to speed

the search for the remaining genes by creating a central pool of data and tissue that

would be widely available to investigators in both academic and industry settings.

The infrastructure for that initiative is in place and the Alzheimer’s Association is

working closely with NIA both to recruit families to participate in the initiative and

to assure that issues of privacy and informed consent are fully met. The full cost

of that initiative is estimated at $60 million.

This genetics initiative is just the latest chapter in the unique story of collaboration and cooperation that NIA has written.

—Through the Alzheimer’s Disease Centers, NIA has brought researchers together across disciplines to bring their multiple lines of scientific inquiry together to tackle Alzheimer’s disease.

—Through mechanisms like the Alzheimer’s Disease Cooperative Study and the

Alzheimer’s Research Coordinating Center, NIA has encouraged, prodded, and

occasionally compelled scientists to collaborate among laboratories and academic institutions—so that today, sharing of data and information and collaboration have become the standard way of doing business in the Alzheimer research community.

—Under Dr. Hodes’ leadership, NIA has fostered cooperation and collaboration on

Alzheimer research across institutes at NIH.

—And for more than 20 years, the Alzheimer’s Association and the NIA have collaborated to maximize our public and private resources to attract new scientists

to the field of Alzheimer research, to encourage novel lines of inquiry, and to

bring researchers from academic institutions and industry together to develop

strategies to move the entire field forward.

This unprecedented collaboration is the unsung story of Alzheimer research—and

it should be a model for the future of all scientific research. You can be assured that

any money you appropriate for Alzheimer research will be spent wisely, efficiently,

and effectively.

$25 million, $29 million, $50 million, $60 million. Senators, these are big numbers

and they come on top of the estimated $650 million that NIH is already spending

on Alzheimer research. But they pale in comparison with the $50 billion that Medicare and Medicaid are already spending on this disease. With an additional $200

million this year, and a total $1 billion commitment as soon as possible, we have

a very good shot at reversing the course of Alzheimer’s disease before it is too late

to save Medicare and Medicaid and the 14 million baby boomers who are at risk.

Senator SPECTER. Thank you very much, Dr. Albert. I think Senator Harkin may have heard the complimentary comments I was
12

making about him and rushed down so that I would not change

any of my statements, but I said before you arrived, Senator Harkin, about our collaboration over the years, the seamless change of

the gavel, knowing that if you want to get something done in

Washington you have to cross party lines, and I now yield to you.

OPENING STATEMENT OF SENATOR TOM HARKIN

Senator HARKIN. Senator Specter, thank you very much, and I

return the compliments. This is the fourth year in a row that we

have had a specific hearing on Alzheimer’s. I have chaired it, and

Senator Specter has chaired it, which again is illustrative of what

Senator Specter said. When it comes to these issues, health issues,

and when it comes to Alzheimer’s research in particular, there are

no party lines around here. We are all in this together, and I just

want to thank my chairman and my good friend Arlen Specter for

all of his diligent work and his leadership in leading this subcommittee on appropriations and leading the obligations we have

across a broad spectrum of health research in this country. But I

can tell you from my own personal conversations with Senator

Specter to all of you in this room, there is nothing that concerns

him more, and to which he has dedicated more time and effort,

than his focus on getting at the root causes of Alzheimer’s, to making sure we fund this program, and to make sure we move ahead

very aggressively in finding those early markers that you were

talking about and those early stages so that we can have early

interventions, and hopefully at some point reach some form of a

preventive measure to cover everyone in this country.

The clock is ticking right now. Maybe someone mentioned this.

There may be 4 million people now with Alzheimer’s, costing our

economy $100 billion a year. By 2050 they tell me there could be

as many as 14 million Americans with Alzheimer’s, costing us over

$375 billion a year. If we could just delay the onset of Alzheimer’s

by 5 years we would save over $50 billion a year.

So again, that argues for us to really make sure that we fund

this larger clinical trials and get on with it. Again, I talk about the

money, but that does not begin to describe the emotional and physical toll that this disease takes on families and loved ones all over

the country.

So I want to thank all of you who are here with the Alzheimer’s

Association, your Capitol Hill Day, please do your best in getting

to the offices here in the Senate and in the House of Representatives to make sure that your story gets out, and to make sure that

we get the kind of support that we are going to need later on, because we are just two, three, four, five on this committee. We need

broad help from the House and the Senate in order to get through

our funding, to make sure we get the amount of money we need

to really tackle this job.

So again, Mr. Chairman, I thank you for your leadership. I thank

you for being here. Dr. Hodes, thank you for your great leadership

at the Institute of Aging, and thank you all for being here. I do not

want to go on too long. I have got people standing there. We want

to get you out of here and get you to the offices so you can do your

job today convincing Senators and Congressmen to support our

budget.
13

Senator SPECTER. Thank you very much, Senator Harkin. We do

have quite a few people standing. There are some seats on the

front row, and you are welcome to come and sit with the Senators.

You will not get to question, though.

But there are empty seats, and you are welcome to take them.

Senator HARKIN. Mr. Chairman, I am sorry. I was remiss, I

wanted to recognize Dwayne and Mary Jean Uptegraph from Dubuque, who took the time to travel, and they are testifying here

later on, and I wanted to just recognize and thank them and other

Iowans who are here today.

Senator SPECTER. Thank you, Senator Harkin.

STATEMENT OF SHELDON GOLDBERG, PRESIDENT AND CEO, ALZHEIMER’S ASSOCIATION

Senator SPECTER. We now turn to Mr. Sheldon Goldberg, who

joined the Alzheimer’s Association as president and chief executive

officer on December 1 of last year. Previously, he was president

and CEO of the Jewish Home and Hospital in New York. He holds

a bachelor of science degree in educational psychology from the

University of Wisconsin. Thank you for joining us, Mr. Goldberg,

and the floor is yours.

Mr. GOLDBERG. Thank you very much, Senator. I am honored

and it’s a delight for me to appear before this committee and to join

both you, Senator Specter and Senator Harkin in the long fight

that you have had with this horrible disease, and to express our

appreciation, and it is my honor to join you in that fight.

I have spent most of my career involved with long-term care, providing health care for people who suffer from this disease, and it

is an honor to get on the other side of this issue to advocate for

its eradication, to do the research and advocate for the services

that are so critically needed. You have provided this leadership,

and we have brought a number of our people from around the

country to participate in this hearing and we thank you for that,

as well as to persuade the Congress, to persuade the President, and

persuade the American people that this is a fight and it is an issue

that needs to be conquered, and that it is an urgent national priority.

Many are here to join me, and many will go about the business

of helping to convey and convey a very compelling story about the

need for research and eradication of this disease, and many will

share their stories with you today, but there are millions of people

across this country who have stories to tell that are heartfelt stories, who suffer from this disease.

Their stories are compelling in themselves in terms of going after

this disease, of trying to aggressively cure, or treat, or finally eradicate this disease, but my approach is slightly different. I want to

speak to you about the economic, the practical, the political reasons

why we need to attack this disease, and why we need to eradicate

this disease now.

Congress is confronted with budget deficits, and I do not envy

you all the tough decisions you have to make, but one of the major

areas you have to confront is the areas of Medicare and Medicaid,

and very simply you will not be able to solve the issues surrounding Medicare and Medicaid unless we resolve the issues and
14

the uncertainty around Alzheimer’s disease. That is the essence of

my presentation and my point.

We will not solve the problem with Medicare and Medicaid until

we solve and eradicate this disease. We will not be able to balance

the Federal budget, especially when it comes to health care, especially in the future until we come to the conclusion that we need

to eradicate and do something about this horrible disease.

Now, it is interesting, I want to just provide a few bits of information if I can. Literally, I believe Alzheimer’s disease is driving

the Medicare cost. For an individual who suffers from Alzheimer’s

disease, it costs three times as much money to provide Medicare

services for that individual, and simply looking at the cost that will

increase over the next 10 years, we are looking at at least a 55 percent increase just for those individuals who suffer from Alzheimer’s

disease.

I would note that us baby boomers have not arrived at the age

to get Medicare benefits at that point, and at that moment it begins to take off. It does not take much to imagine, when the baby

boomers arrive and suffer from this disease, if it is not eradicated,

there are supposed to be 14 million baby boomers who suffer from

this disease. It is almost a four times, 400 percent increase in the

level of needs and the level of cost to meet their needs.

Medicaid is just as grim. At both the Federal and the State level,

and I know you receive tremendous pressure. My background is

representing the nursing home industry and long term care in this

country. Prior to coming to this position I ran the largest and the

oldest long term care system in this country serving literally tens

of thousands in New York City, and I have to tell you our institutions and our services were filled. At least 60 percent of the people

were there suffering from Alzheimer’s disease, and it is literally the

issues that are driving the system.

I cannot tell you how it bankrupts families. Everyone strives to

keep their loved ones at home. They try to do the best they can and

get the best resources they can, and literally families do go bankrupt from this disease, but I also have to tell you that they are

bankrupting the Medicaid system, and if you simply look over the

next 10 years, the numbers, we will be looking at an 80-percent increase just for Alzheimer’s disease, for people who suffer from this

disease in the Medicaid program.

If I were a Governor and I was appearing before this committee,

I would be demanding funds for research to have launched an assault on this disease, because Medicaid programs are driving the

State budgets across this country. We need to find the cure and

eradicate this disease.

If I was a corporate CEO coming from one of our Fortune 500

companies in this country, I would be asking for research dollars,

because simply it is one of the largest areas of productivity decreases because of individuals who have to meet family members’

needs across this country. It is estimated it costs corporations $61

billion a year in just lost productivity because of the needs for Alzheimer’s patients.

So there is much to be done. Now, there is a game plan, and they

are able to present the game plan to the committee. Some of it goes

in terms of how we modify the Medicare program to focus more on
15

a chronic care benefit. That will help somewhat, but it is not going

to solve the problem. The problem will not go away. It may provide

some minimal or modest relief.

Research we believe is the only answer, and is the only way of

getting control of Medicare and Medicaid costs, and this is why we

are calling on the Congress and asking for your assistance for approximately $200 million additional research dollars to continue

the research that started and take on additionally critical cases

and critical issues of research that have to go on. Now, I am not

a scientist, but I understand the only solution to finding a solution

to Alzheimer’s disease is going to come through science.

Now, let me end, if I can, we know some things about Alzheimer’s, and I am learning much more, that if you are going to

get, you or I, Alzheimer’s disease, the disease starts long before the

manifestation of symptoms. It starts 10 years, maybe 20 years beforehand, and if you as Senators or I as an individual is destined

to get Alzheimer’s disease, it is vitally important that these

changes that are going on in our brains at this time before we see

the symptoms, it is vitally important we initiate the research to

find the solutions to these problems.

PREPARED STATEMENT

I cannot tell you how honored I am to come before you. I cannot

express the deepest appreciation we hold for you for your commitment to helping us eradicate this disease, and I can only speak for

the people who across this country suffer from the disease and the

many who fear it, and thank you very much for your support and

your responsiveness.

[The statement follows:]

PREPARED STATEMENT OF SHELDON GOLDBERG

I am delighted to be back before Congress this morning in my new role as CEO

and President of the Alzheimer’s Association. My entire career has been in long

term health care, but this is the most important job I have ever held. Senator

Spector and Senator Harkin, you have been leaders for many years in the fight

against Alzheimer’s disease—it is an honor for me to join you.

Two years ago, you put the Senate on record in support of $1 billion for Alzheimer

research, and thanks to your leadership, we are almost two-thirds of the way to that

goal. The Alzheimer’s Association is committed to helping you get the rest of the

way—to reach that goal as rapidly as possible. Today’s hearing is just the beginning

of our redoubled effort to persuade Congress, the President, and the American people that the fight to conquer Alzheimer’s disease must be an urgent national priority.

Sitting behind me in this room today are hundreds of women and men with heart

wrenching stories of the devastating personal impact of Alzheimer’s disease. They

are people who have Alzheimer’s, their families, and their care partners. You will

hear from some of them this morning. The rest will leave here to go tell their stories

to your colleagues, their own representatives in Congress. There are tens of thousands more like them, across the country, who will be following up with Congress

in the weeks and months ahead.

These personal stories are compelling and should be sufficient cause for Congress

to act, immediately and aggressively. But there are also very practical political and

budgetary reasons for an all out assault on Alzheimer’s now—and that is what I

want to discuss with you.

This is a Congress that must confront growing budget deficits and a looming crisis

in Medicare and Medicaid. My message is simple. You will not—you cannot—save

Medicare and Medicaid unless you get Alzheimer’s disease under control. You will

not—you cannot—balance federal and state budgets if you let Alzheimer’s disease

continue on its present course.
16

Let me paint the picture for you.

THE COST OF ALZHEIMER’S DISEASE IS UNSUSTAINABLE

Alzheimer’s disease is already driving up Medicare costs. The program pays 3

times more for basic health care for persons with dementia than it pays for other

beneficiaries. That holds true across age groups and medical conditions. Within 10

years, annual Medicare costs for beneficiaries with Alzheimer’s will increase by 55

percent—from $32 billion to almost $50 billion. And that is before the baby boomers

enter the age of risk. Imagine what will happen to Medicare when 14 million baby

boomers have Alzheimer’s disease.

The outlook for Medicaid is just as grim. For 16 years, I represented long term

care providers here in Washington. More recently, I ran one of the oldest and largest long term health care systems in the country. I can tell you that these systems

are already full of people with Alzheimer’s disease. Nearly 60 percent of residents

of our nursing homes—and perhaps as many in assisted living—have dementia.

They are already straining capacity to the breaking point.

We need to work as hard as we can to provide more options for people to stay

at home with their families as long as they can. But eventually most people with

Alzheimer’s disease will need full time care that is beyond the ability of families

to manage on their own. If we let 14 million babyboomers get to that point in Alzheimer’s disease, we will be building nursing homes on virtually every street corner

in America.

The cost of that long term will bankrupt families first. And then it will bankrupt

Medicaid. Within 10 years, Medicaid’s share of the annual nursing home bill for people with Alzheimer’s will increase by 80 percent—from $18 billion to $33 billion. If

I were a Governor, I would be beating down the doors of Congress demanding the

funds for an all-out assault on Alzheimer’s disease.

If I were a corporate CEO, I would be here urging you to act, because Alzheimer’s

disease is extracting heavy costs from American business as well. In 2002, that cost

was $61 billion—the majority of it the result of lost productivity of workers caring

for people with the disease. That was the equivalent of the profits in 2002 of the

top 10 Fortune 500 companies. And it was almost twice as much as the 1998 estimate of a $33 billion cost to business.

THERE IS A CLEAR GAME PLAN TO CONQUER ALZHEIMER’S DISEASE

We still have time to mount a successful offensive against Alzheimer’s disease.

The Alzheimer’s Association has laid out a clear game plan in this National Program to Conquer Alzheimer’s Disease, which I would like to offer for the record.

Part of that game plan calls for changes in Medicare to focus a chronic care benefit that will keep people out of hospitals, emergency rooms, and nursing homes.

This will help hold down increases in Medicare and Medicaid costs somewhat, and

we are discussing this with the appropriate Committees of jurisdiction. But the only

real way to save Medicare and Medicaid, and to get health care spending under control, is by reducing the numbers of people who need expensive care—and that will

come only through research.

That is why we are calling on Congress to provide an immediate increase in appropriations for Alzheimer research of at least $200 million. With such an increase,

Dr. Hodes and his colleagues at the National Institutes of Health will have the resources they need to maintain the momentum of Alzheimer research—to find effective ways to prevent and treat Alzheimer’s disease while there is still time to make

a difference. That level of funding will keep research flowing rapidly through the

pipeline from basic science through clinical trials. It will also provide funds for the

imaging and genetics initiatives that will get us to prevention and treatments faster, better, and in the long run, cheaper.

Dr. Hodes and Dr. Albert are here to explain the science to you. I want to underscore the cost. Each new clinical trial of a potential prevention will cost at least $25

million—but those trials are the only way to get discoveries out of the lab and into

the practice of medicine. The imaging and genetics initiatives will each cost an estimated $60 million. It will take another $29 million to fund just 10 percent more

of the most promising peer reviewed investigator initiated projects. The National Institute on Aging is aggressively recruiting private industry as full collaborators, and

the Alzheimer’s Association will commit all of the funds we can. But there is no way

to solve the puzzle of Alzheimer’s disease without the leadership, the influence, and

the resources of the federal government, through the National Institutes of Health.
17

THIS IS A RACE AGAINST TIME

Budget procedures and politics encourage Congress to think one or two years at

a time. So why the rush about Alzheimer’s, some might ask? If the real explosion

of people with the disease is still at least 10 years away, can’t we put this off for

a while and focus on other urgent priorities now?

Wrong! We know now that the damage to the brain that causes Alzheimer’s starts

10, maybe 20, years before clinical symptoms appear. That means, Senators, that

if you or I or any of your colleagues is destined to get Alzheimer’s, something is already going on in our brains. The disease is already at work. That means we have

to find the answers now. Ten years from now, it may be too late to save another

generation. Ten years from now, it may be too late to save our health care system.

Our nation is facing huge challenges today—rising budget deficits, the war in

Iraq, continued threats to our homeland security. We understand that this is a time

when Congress has to make tough choices and set clear priorities. It is a time that

demands personal sacrifice and postponed agendas.

It is also a time that requires leadership—leadership to make sure that we confront our most urgent domestic problems. In his State of the Union message, President Bush issued a challenge to Congress and the nation:

‘‘We will not deny, we will not ignore, we will not pass along our problems to

other congresses, to other presidents and to other generations . . .’’ he said.

Yet that is exactly what we will do if we do not find a way to stop Alzheimer’s

disease now. If we fail, then our health care system will implode, and Alzheimer’s

will be the detonator. We pay now, or we leave other congresses, other presidents,

other generations to pay much more later.

Senator SPECTER. We will now begin the rounds of Senators’

questioning, 5 minutes.

Dr. Hodes, you have emphasized in both your written and oral

testimony the impact of stem cell research. Focusing for just a

minute on nuclear transplantation, which is the effort to be sure

that the donor receives stem cells which are consistent with his

own DNA, to what extent is that experimentation important on

conquering Alzheimer’s?

Dr. HODES. Well, I think at this point, until experiments are

done in additional related areas we do not know the final answer.

The point you make is an important one, that it may be critical to

derive a source of stem cells that are genetically identical to the individual being treated and, as we know, there are a number of potential sources for that.

One of them is adult stem cells which show certain potential for

differentiation. We do not know, as yet, whether this will completely satisfy all the requirements, ultimately, for optimal intervention or not. An alternative is to use a technique such as nuclear

transplantation to generate such cells from each individual, and

until we have experimented with the alternative approaches, we do

not know which will be successful, we do not know which will be

preferable.

Senator SPECTER. But you want to maintain the open door for experimentation with all the available alternatives.

Dr. HODES. I think that the more alternatives we are able to pursue, the greater the probability of our finding a successful strategy.

Senator SPECTER. Dr. Albert, you make a comment about patents

impeding research. Protection of patents is obviously important for

those who invest substantial money, but I am concerned about patents impeding research, and the thought goes through my mind

that it is contrary to public policy to have property interests which

are impeding research where people with those patents are not cooperative, especially with NIH, or really with others, on a research
18

line in some way where profits could be protected, investment property interests could be protected.

Do you have any suggestion as to what might be done to facilitate research and still respect patent interests?

Dr. ALBERT. The animal model consortium that I mentioned is

one way in which we can go about this. This represents a group

of individuals from foundations, from the Alzheimer’s Association,

from the pharmaceutical companies who have formed a company,

and the company is the one that is going to underwrite the development of these animal models.

Senator SPECTER. Are there some patent holders who are recalcitrant and unwilling to enter into cooperative ventures to promote

research?

Dr. ALBERT. I think it is more related to the institutions that

they are at. In some ways, these were problems that we did not

foresee a few years ago, and when some of the animal models were

developed the patents were obtained by their institutions and they

feel very strongly about not releasing them.

Senator SPECTER. I would appreciate—and I do not mean to interrupt you, but I want to cover some questions, and each of us is

limited to 5 minutes, including the chairman, and I intend to observe the rules meticulously. I would appreciate it if you would

supplement your oral testimony by particularizing what is happening in the patent field and where we ought to look further. Congress can legislate on this subject, and we want to respect property

interests, but we also do not want research to be impeded, so if you

would supplement your oral testimony, we would appreciate that,

because we would like to clear the way for this important research.

Dr. ALBERT. I would be happy to do that, Senator.

[The information follows:]

Question. How do patents get in the way of research on Alzheimer’s disease?

Answer. The patent process is an important motivator for the development of new

products and treatments for Alzheimer’s disease. That is not what we are talking

about here. The real issue is whether patents or other mechanisms prevent access

by researchers to the fundamental knowledge necessary to advance our understanding of Alzheimer’s disease. For example, when animal models or tissue samples containing genetic information are protected by intellectual property rights or

subject to complicated material transfer agreements, the material may be available

to other researchers only at prohibitive cost that drives up the cost of research and

delays discovery.

Progress in Alzheimer’s disease demands the rapid and unimpeded transfer of information and research tools among investigators and institutions. The National Institute on Aging has led efforts to stimulate and encourage cooperation, collaboration, and sharing among researchers and academic centers that has become the

standard for Alzheimer research and a model for the larger scientific community.

Here are two examples of efforts now in the early stages of implementation that are

designed to assure that key information and research tools are broadly available to

the Alzheimer research community without patents, claims of intellectual property

rights or other mechanisms that would restrict or delay access.

The first is the Genetics Initiative now underway under the leadership of NIA.

We are quite certain that there are a number of genes implicated in Alzheimer’s

disease that have yet to be identified. The goal of this initiative is to identify the

remaining risk factor genes, associated environmental factors, and the interactions

of genes and the environment. Finding those genes requires large numbers of samples for genetic analysis, more than can be collected at any one research site. The

NIA has established and is funding a National Cell Repository for Alzheimer’s Disease and has awarded grants to at least seven academic centers to recruit families,

collect clinical data and blood samples, and provide DNA and cell lines along with

phenotypic data to the Cell Repository. No intellectual property rights will attach

to any of the data and tissue collected. These sample sets will be freely available
19

to qualified researchers and will serve as the ‘‘gold standard’’ against which researchers could test their findings. The full cost of this Genetics Initiative is estimated at $60 million and will require additional support from Congress.

A second area of interest is the development of animal models—key to speeding

the search for effective clinical treatments. Basic science and results from epidemiological studies are identifying many candidates for potential treatments—more than

we can afford to study in large scale human trials. A single prevention trial in humans takes at least 3 to 5 years and easily costs $25 to $30 million. By developing

more effective animal models of Alzheimer’s disease, it will be possible to test potential treatments faster and to identify the most promising candidates for human

trials. All of that will get us to treatments faster, better, and cheaper. This strategy

involves more, though, than just the development of animal models. It requires that

the models, once developed, be broadly available to the Alzheimer research community. In the past, Material Transfer Agreements established by academic institutions where animal models originated have created administrative and financial

barriers to broad utilization. The Alzheimer’s Association is embarked on a very significant effort, with other private non-profit and industry interests, to establish a

non-profit organization that is serving as a catalyst to bring together investigators

working on animal models and to stimulate and support development of new models

that would be freely available to the research community. This effort is undertaken

in close coordination with the NIA. While the partners in this new organization will

commit their own resources to support animal model research, it will take additional resources from Congress to the NIH to realize fully and rapidly the potential

of this critical area of research.

Senator SPECTER. Mr. Goldberg, you make a comment about

Medicare and Medicaid being key expenditures, which I agree with

you about. What I would like you to do—you have asked for $200

million more in research. I would like you to supplement your oral

testimony by giving us a projection as to what $200 million more

would do by way of solving the Alzheimer’s problem and how that

would impact on Medicare and Medicaid expenditures. Now, that

is very frequently an incentive for Congress to do things if you can

save money at the end of the rainbow, and there is certainly a bigger avenue for saving.

[The information follows:]

Question. How soon will we have a cure for Alzheimer’s Disease?

Answer. The target of Alzheimer research is not so much a ‘‘cure’’ but rather effective prevention and treatments that can delay onset and progression of the disease.

Those are targets that most scientists believe are well within reach within the next

10 years if we maintain the current momentum of Alzheimer research. Of particular

note is the very exciting work now underway to test, in clinical trials, the amyloid

hypothesis of Alzheimer’s disease. This includes the well publicized trial of a potential vaccine against the production of amyloid—a trial that is still underway as investigators are working to modulate the adverse effects of the first configuration of

the vaccine. The trials are already showing promising signs of the production of

antibodies to amyloid and of the actual reduction in the formation of amyloid

plaques. Another important trial is underway, testing inhibitors of the enzymes that

make amyloid—the toxin in the brain that causes cell death.

Other promising work continues on a wide range of compounds testing theories

of inflammation, hormones, and cardiovascular risk factors as factors in the development and progression of Alzheimer’s disease. All of this work is made possible by

the continued advance in basic science funded by NIH.

Scientists have modeled the impact of the two most likely products of this current

research—the first, a compound that would delay onset of Alzheimer’s for an average of 6.7 years; the second, a compound that would delay progression from mild

to moderate/severe disease. (Right now, progression occurs at a rate of 28 percent

annually; this model would slow progression to an annual rate of 10 percent.)

If we can accomplish these dual objectives, then under this model, by 2050 we

would see a nearly 36 percent reduction in the total number of cases of Alzheimer’s

disease. But of even greater significance—both for quality of life and cost to the

health care system—the majority of cases—56 percent—would be mild Alzheimer’s

disease. This compares with current projections that, without such treatments, 63

percent of cases would be moderate to severe and require full time care.
20

Question. If we provide an additional $200 million for Alzheimer research, how

much can we save Medicare?

Answer. The real cost of Alzheimer’s disease to Medicare comes when dementia

is overlaid on other common comorbid conditions among the elderly. For Medicare

beneficiaries at any age, costs are three times higher among those who have cognitive impairments. But the difference in cost is most dramatic among those in the

younger (65–74) age group—4.2 times higher. As shown in the answer to the previous question, development of effective treatments to prevent onset and delay progression of Alzheimer’s disease will significantly reduce the numbers with the disease and, of those who have the disease, the percentage with moderate to severe

dementia. If we can accomplish this, then we may be able to reduce the adverse impact of dementia on the cost of treatment of other medical conditions.

Senator SPECTER. A final question for you, Dr. Hodes. To the extent that you can specify, how close are we to a cure for Alzheimer’s?

For $663 million, ladies and gentlemen. I think that is a fair

question.

Dr. HODES. And the fairest answer I can give, Senator, is that

we are a good bit closer than we were only a short time ago. I do

not mean to be difficult in not responding, but the ability to answer

with precision just when we will arrive at a final solution is elusive. The course of science and the complexity of the disease makes

it impossible to know, but as Dr. Albert has expressed, the overwhelming consensus in the field, in the research field, which I certainly share, is that the pace of progress over these past years has

been dramatic. It is bringing us closer than any of us dared hope

we would be only a few years ago.

Senator SPECTER. My red light is on, so I will not ask any further

questions, but to the extent the three of you could give us a projection on when we might cure Alzheimer’s—and I know you cannot

give us an absolute date, subject to increases in funding, that could

motivate additional funding from the Congress.

Senator Harkin.

Senator HARKIN. Thank you, Mr. Chairman.

Dr. Albert, you spoke about the, now we know there is three different stages. At least you have broken it down into basically three

different stages, and Dr. Hodes, you said that NIH is now supporting 18 clinical trials on Alzheimer’s, seven of which are largescale prevention trials. How long have these large-scale prevention

trials been going on, and do you have any preliminary data from

those that you might at least tell people they might do to prevent

it now?

Now, for example, a lot of people are doing things like, they are

taking statins, ibuprofen, ginko biloba, vitamin E, doing daily

crossword puzzles, all kinds of things that people are doing now to

try to ward off dementia. Have you gotten anything from these

trials yet that you could tell what people might want to think

about doing that at least would not be harmful to them and might

be helpful?

Dr. HODES. As I mentioned, Senator, the prevention trials really

began less than 5 years ago, and by their nature will take in general 5 to 7 years to complete, so we do not have results from any

of them as yet. There is as yet no positive result demonstrating

conclusively the ability of any of the interventions which you mentioned which are under study to delay or prevent the development

of disease.
21

The very important question that you bring up concerning things

which people ought to do because they help but cannot do any

harm is a very important and reasonable question but a very difficult one to answer until research is completed. As long as we do

not know the outcome of these trials, not only do we not know

whether they will be successful, we also cannot be certain that they

will not actually have adverse effects, and I think we have learned

some disappointing lessons in that regard. For example, from the

very widely publicized results of the women’s health initiative, researchers are looking at the complexity of hormone replacement.

So we would project by the nature and timing of the studies that

over the next 3 to 4 years we will begin to see results from some

of these prevention trials and whether they are effective or not.

From that point, we will be able to plan subsequent studies in that

direction.

Senator HARKIN. Have you done any kind of investigations into

families where maybe one person had come down with Alzheimer’s

but a sibling had not, or a couple of siblings had not, and looked

at variations in diet, how they lived, what they did, that type of

thing? Have you looked at anything like that?

Dr. HODES. Yes. That is a very important kind of study to be

done, to try to dissect both the genetic and the environmental risk

factors for Alzheimer’s disease, and family studies of this kind have

been carried out. Some have led to the identification of genetic risk

factors, others have shown environmental correlates or risk factors

based on epidemiologic studies, and you have alluded to some of

them. We do know that in general individuals who have more education are less likely to have disease and that individuals who have

a history of certain drug exposures are less likely to have disease.

We know that individuals with a history of head trauma are more

likely to have disease. These are providing, then, clues as to the

kinds of clinical trials and studies that can be done to see whether

any of these correlations actually translate into true cause-and-effect relationships, and that can be done most conclusively only by

clinical trials.

Senator HARKIN. I want to join with the chairman and just say

that if you could give us a better idea of what that extra $200 million you are asking for will specifically go for, and how it might

help shorten the time frame to find some of these answers, that

would be very helpful.

Dr. HODES. Absolutely. Just to elaborate briefly on some of the

questions and agents you have mentioned, in terms of diet, we

know recently that risk factors for Alzheimer’s disease include such

things as high levels of homocysteine, untreated high levels of cholesterol. We know that there are drugs such as the statins, or folic

acid and B-vitamins, that can correct these abnormal blood values.

We know they have been studied rather extensively, for example,

for the cardiovascular risk factors which they present, and studies

which are now being initiated will similarly ask whether those very

same interventions can delay onset and/or treat people already

with symptoms.

Senator HARKIN. Thank you, Dr. Hodes. Thank you, Mr. Chairman.
22

Senator SPECTER. Thank you very much, Senator Harkin. Senator Craig.

Senator CRAIG. Well, to all of you, thank you very much. You

bring us valuable information, and you make the case so dramatically well, and that is important for all of us to understand.

Dr. Albert, talk to me about the kind of teaming you see that

needs to come about that does not necessarily come about in an individualized community of interest. How do you accomplish that,

and what do you expect it to yield?

Dr. ALBERT. I think we already have examples of how to accomplish it, because in some respects the National Institute on Aging

has established the infrastructure for this, so for example, for clinical trials there is a large infrastructure that involves 20 to 30 centers around the country that are collaborating on an individual

clinical trial. It involves neurologists, psychiatrists, statisticians,

neuropsychologists, and what makes it so costly is that it is very

difficult to work across disciplines. You have to learn the language

of the other person and, of course, just meeting and coordinating

everything is very time-consuming and costly.

It is clear that it is paying off, because the little that we do know

about how to more effectively treat Alzheimer’s disease comes from

such clinical trials where there is this kind of integration, and that

is the model that we are hoping for for the imaging initiative that

both Dr. Hodes and I mentioned whereby radiologists and neurologists and statisticians and experts in just image acquisition would

all work together and would share a common database, collect information collaboratively and then analyze it collaboratively.

The unique aspect to that is that the plan is to have it be funded

both jointly by industry and government, and so the pharmaceutical companies are also involved in helping to plan it so that

they can get the kind of data that they think they most dearly need

in order to evaluate drugs.

Senator CRAIG. That only comes with increased dollars, or can

you now and are you now doing that?

Dr. ALBERT. It absolutely requires increased dollars. The esti- mated cost for the imaging initiative alone is $60 million, and my

guess is that that is an underestimate, because we are talking

about 20 to 30 centers around the country. We are talking about

acquiring sophisticated imaging data on a large number of people,

figuring out how to do it in a standardized way, evaluating it collaboratively across sites, so it is going to be very costly.

Senator CRAIG. Thank you.

Mr. Goldberg, your dramatic analysis of the impact on Medicare

and, of course, Medicaid and States is real in all regards. I am

spending a good deal of time looking at Medicaid now and prescription drugs, and how we adjust it to a dynamic health care system

of the kind that we are obviously into, and one that is demonstrated by what you are here doing, and asking for today and

doing.

We are driving health care costs dramatically because we now

can approach so many other things that we were unable to do. I

had Alan Greenspan recently before the Committee on Aging simply because he looks at global aging as an impact on our culture,

and cultures around the country, and he said, Social Security is
23

easy to fix. It is relatively static and adjustable. Medicare is impossible for you to fix because you are trying to deal with a very dynamic industry.

Now, having said that, your appeal is important, and obviously

to arrive at a cure or a managed environment to disallow the impact of Alzheimer’s on our more senior community would help a

great deal, but I am also struck with the reality of trying to deal

with other dynamics in that.

If we only took those who are currently in Medicare and could

discipline them to manage their health in a way, and I am talking

about those with chronic illnesses, managed chronic illnesses, or

those that can be managed and sustained and project life, we

would reduce the cost of Medicare today by nearly 50 percent, and

we could give them all of their health care free if they would comply simply with the protocol. We cannot do that. People won’t do

that. It is part of Senator Harkin’s and my frustration about nutrition and health care and all of those kinds of things.

I mean, there are some very interesting dynamics out there, but

you do put your finger on an important one, and we are driving toward that. You are competing with a lot of other interests. We will

do the best we can, but the reality of trying to adjust this payment

system, if you will, to this very dynamic health care economy is one

that I do not think we are up to the task as of yet because we cannot shape it in a way that we can control the cost, and that is

something that Congress asked us to do.

Thank you. Thank you, Mr. Chairman.

Senator SPECTER. Thank you very much, Senator Craig.

Senator Murray.

OPENING STATEMENT OF SENATOR PATTY MURRAY

Senator MURRAY. Thank you, Mr. Chairman, and thank you to

you and Senator Harkin for your tremendous bipartisan work on

funding research at NIH. It has made a tremendous difference, and

I really appreciate your having this hearing and your continued advocacy for that.

I would like to thank everyone who is here today to remind all

of us with all of what is going on in the world today there are people who are dealing with this serious illness in their families every

single day, and how important it is for us to continue to fund the

research.

I did want to ask the panelists, because all of you have mentioned genetic work on this, and one of the most promising breakthroughs in understanding the disease and seeking treatment options has been the discovery of a possible genetic link that could

lead to early diagnosis and treatment, but I am concerned that the

development of genetic testing could be hindered by a lack of protection against discrimination in employment and insurance.

If an employer knows that a worker could be predisposed to Alzheimer’s disease they could use that information to deny future employment or advances or exclude them for insurance coverage, and

we are going to be marking up a tough bill on genetic discrimination in the Health, Education and Labor Committee sometime here

in the near future, and I wondered if any of you wanted to com-
24

ment on how important genetic nondiscrimination legislation is for

your research.

Dr. ALBERT. Well, there is no question that everybody who is involved with genetic research is very concerned about confidentiality. At all the medical centers that I know there are special consent forms that need to be signed if anyone is in a genetic study

that is separate from the consent form for the rest of the study.

We lay out for individuals how concerned we are about confidentiality, and how careful we are, but we also point out to them that

right now there are concerns that there would be discrimination in

the workplace, and we are very grateful for the legislation that you

are proposing.

Senator MURRAY. Dr. Hodes.

Dr. HODES. I would certainly reinforce what Dr. Albert has said.

In particular with genetic disease, the issues of even informed consent take on a special meaning in that a given individual may consent to studies regarding his or her own genetics, but family members who may not be giving their own consent, are in the end unavoidably affected by the informed consent of any other family

member. So in the end, I think it is only the kind of legal protection that you are working so hard to develop that really can be

functional and will go beyond the ability of any single individual

to make a decision about his or her own confidentiality.

Senator MURRAY. Well, I hope we get your help and support in

getting that through. It has been a long road, but I think it needs

to be done, so I appreciate that. We have had a lot of conversation

today about the amount of money needed for research, and Mr.

Goldberg was very clear that we need to find an answer to this disease because of the cost on Medicare and Medicaid, but at the same

time there are thousands if not millions of families who are dealing

with it every single day.

Alzheimer’s is not a disease that just affects one person. It affects

everyone around them and their ability to be able to be productive

in their own lives, and Senator Mikulski, who is the ranking member on the Aging Subcommittee of the HELP Committee, has been

really working hard to expand efforts on family caregiver support

as part of the Older Americans Act, and I wanted to, just because

I think it is so important, if you would comment on how important

these kinds of services are to patients and families, and is there

anything else we should be doing to help support families?

Mr. GOLDBERG. Maybe I could comment. I think there is a tremendous amount of things that could help support families. We

have a plan, obviously, to look at the Medicare program and to provide as much support to provide services in the community and in

the home. Much of our programs of funding are really much more

geared towards hospitals and nursing homes and other types of institutional environments. We need to structure everything possible

to keep people as independent in their own homes as long as possible. The act of providing care on the caregiver is an exhausting

task, so anything that can be created to provide relief, some respite

care, fund day care programs, alternative types of services to people is vitally, vitally important, and so we would urge you, everything you can possibly do to do this.
25

My issue with the issues of Medicare and Medicaid is that I believe, I as a provider, that it is Alzheimer’s which is driving the

cost, especially for long term care. Our institutions are filled with

people who suffer from Alzheimer’s. Many people with multiple

chronic disabilities remain in their own home much easier, but

once the Alzheimer’s really reaches a severe stage, they really lose

that opportunity. That is why I would argue so strongly for the

need for research to eradicate this disease, but I would argue also

that we need to find every possible way to support people in their

own homes.

Senator MURRAY. Not at the expense of helping the families who

deal with this——

Dr. HODES. That is correct. I would only add that as much as we

emphasize the research, epidemiologic, biologic, molecular, that’s

important to understand and approach the causes of Alzheimer’s

disease, so just as you note, research must be directed at present

to identifying the stress upon caregivers. It is important to look at

ways to reduce that stress and so to increase the quality of life for

those afflicted and their families. Indeed, there are clinical trials

ongoing to look particularly at novel and innovative mechanisms

for reducing caregiver stress and providing environments that enable people to live the life——

Senator MURRAY. Such as? Can you give us an example?

Dr. HODES. Well, the first phase of a study called REACH, which

was a multicenter study designed to look at nine different intervention components for reduction of stress has now been completed,

and on the basis of that first study has led to a second generation,

if you will, REACH II, which has taken the most promising components of these several studies into a clinical trial. It includes such

things as providing respite care and looking at the new communications modalities such as the World Wide Web to provide resources, information and support for individuals.

Senator SPECTER. Dr. Hodes, would you complete your answer in

writing? We have six more witnesses, and we are going to have to

conclude this hearing by 11.

Senator MURRAY. Thank you, Mr. Chairman. I know my time is

out, and I would love to hear more, because I think we have to pay

attention to the families who are taking care of these people as

well. Thank you.

Senator SPECTER. I quite agree, Senator Murray. If you would

supplement your oral answers in writing, we would appreciate

that.

[The information follows:]

The multi-site Resources for Enhancing Alzheimer’s Caregiver Health program

(REACH II) was funded in September 2001. It is designed to test a single multicomponent intervention to enable care-givers to learn and use cognitive and behavioral strategies, to impact both care recipient behaviors (e.g. wandering) and their

own behaviors (e.g., managing stress). It will (1) identify and reduce modifiable risk

factors among caregivers, (2) enhance the quality of care, and (3) enhance the wellbeing of caregivers. This 3-year renewal builds on the results of REACH I, a multisite feasibility study. The ultimate objective is to translate findings into materials

and programs that are readily useable in the community of caregivers. The study

will also evaluate the cost effectiveness and public health significance of the intervention.
26

Senator SPECTER. I would like to call our next panel now, Mr.

Dwayne and Ms. Mary Jean Uptegraph, Mr. Donald Kurtz, Mr.

Mike Martz, and Mr. Terrell Owens.

STATEMENT OF MARY JEAN AND DWAYNE UPTEGRAPH, DUBUQUE, IA

Senator SPECTER. We begin with Mr. Dwayne Uptegraph, who

was diagnosed with Alzheimer’s disease in December 1999, 1 week

before his 53rd birthday. Prior to that diagnosis, he was an art

teacher for 31 years and coached football and basketball at Jefferson Junior High School in Dubuque, Iowa, a graduate of Upper

Iowa University.

Mrs. Uptegraph recently retired from her job at a radiologist’s office to spend more time with her husband. They have been married

for 35 years and have three children and four grandchildren.

Thank you for joining us, Mr. and Mrs. Uptegraph, and Mrs.

Uptegraph, the floor is yours, and we look forward to your testimony.

Ms. UPTEGRAPH. Thank you very much, Senator Harkin, Senator

Specter, for giving us the opportunity to testify this morning. We

are truly honored to be here this morning representing the Greater

Iowa Chapter of the Alzheimer’s Association.

As you stated, my name is Mary Jean Uptegraph, and I am here

today with my husband, Dwayne, our daughter, and our 5-year-old

granddaughter. The four of us have traveled to Washington from

Dubuque to ask you to please do everything you can to increase the

funding for Alzheimer’s research so that a cure or prevention can

be found as soon as possible.

Our plea for increased research funding comes from the heart.

Dwayne has Alzheimer’s disease. He was diagnosed in December of

1999, 1 week before his 53rd birthday.

Dwayne graduated from Upper Iowa University in 1969 and we

moved to Dubuque shortly after that so he could start his teaching

career. He taught art at Jefferson Junior High for 31 years, and

for 26 of those years he coached football, basketball, and track. Together, we raised three wonderful children, Todd, Kristine, who is

here with us today, and Gretchen. Our children have blessed us

with four amazing grandchildren who range in age from 6 months

to 6 years, and we are looking forward to the arrival of our fifth

grandchild in May.

Our story starts like many others have. Dwayne started to misplace things around the house, and one day he got lost while driving the 5 miles between our house and the school he taught at, the

same route he had driven for 30 years. He also started misplacing

things such as the art supplies and student assignments in his

classroom.

After talking with the principal at the school, we went to the

local internist, who performed several tests. Dwayne was then sent

to a neurologist, where he underwent an MRI, a spinal tap, which

there confirmed the presence of the ApoE gene that has been

linked to Alzheimer’s. He also went through a full battery of verbal

and psychological testing.

Dwayne’s neurologist immediately started him on the medication

for his anxiety and large doses of vitamin E, in addition to one of

the four available Alzheimer drugs. He has since added B6, B12,
27

folic acid, and aspirin to see if this does help. We informed

Dwayne’s principal, and the decision was made to let him finish

out the remainder of the school year. The principal and Dwayne’s

coworkers were very supportive and understanding. He retired

from teaching in June 2000 after 31 years.

I continued to work in the local radiology office, and we did a lot

of planning for the future. We wrote our wills, signed a power of

attorney, and we attended a few of the Alzheimer Association conferences and educational programs. We participated in the Memory

Walk to help raise money for local programs and services.

Dwayne began volunteering in the art department at our neighborhood elementary school. It helps keep him both mentally and

physically active. While he really enjoys his time in the classroom,

there are moments that are frustrating for him. Dwayne spent his

entire career as an educator. Today, he cannot provide the right

answer when a fourth grader asks him to help with the spelling of

a common word.

We have made additional changes in the last few months to

spend more time together as a family and to accommodate

Dwayne’s needs. In December, I retired after 19 years of work. It

had just become too difficult for me to hold down a full-time job

and give Dwayne the support he needed. Dwayne sees his neurologist every 6 months, and he also visits a memory therapist once a

month who helps him with his recall and thought process.

Senator Harkin, we are here today to ask you and Senator Specter for your understanding leadership in the fight against Alzheimer’s disease, and to support your efforts to increase the funding. We need to stop this disease while we still have the chance.

Dwayne’s father died with Alzheimer’s. Dwayne and I are worried

that we have passed this disease on to our children and grandchildren.

We know that the scientists are on the verge of finding ways to

prevent and treat Alzheimer’s, and the actions Congress takes

today may save future generations from this terrible thief that

steals memories, disrupts careers, and affects millions of families.

We are scared for the future, but grateful for our supportive family

and the good life we have had so far. We want to do everything we

can to raise the awareness about the disease and the need for research funding. On behalf of our entire family, we thank you for

giving us the opportunity to share how Alzheimer’s disease has affected our lives.

In closing, we would like to read a short letter that our grandson,

Noah, has written to Senator Harkin. We brought this letter with

us today and ask that it be entered into the congressional record

as a part of the testimony:

Dear Senator Harkin, I hope my grandpa can get better. He is

an artist and we draw pictures together. I hope you can help him.

Love, Noah Goebel.

Dwayne has just a short couple of phrases he would like to express today.

PREPARED STATEMENT

Mr. UPTEGRAPH. I have a hard time expressing myself, but I am

here today to ask you for your help. I pray that a drug will soon
28

be found to help me and everybody else who has this disease.

Thank you.

[The statement follows:]

PREPARED STATEMENT OF MARY JEAN AND DWAYNE UPTEGRAPH

Thank you very much Senator Harkin and Senator Specter for giving us the opportunity to testify this morning. We are truly honored to be here, representing the

Greater Iowa Chapter of the Alzheimer’s Association.

My name is Mary Jean Uptegraph and I am here today with my husband of 35

years, Dwayne, our daughter and five-year old granddaughter. The four of us have

traveled to Washington from Dubuque to ask you to please do everything you can

to increase funding for Alzheimer research so that a cure or prevention can be found

as soon as possible. Our plea for increased research funding comes from the heart—

Dwayne has Alzheimer’s disease. He was diagnosed in December 1999, one week before his 53rd birthday.

Dwayne graduated from Upper Iowa University in 1969 and we moved to Dubuque shortly after that so he could start his teaching career. He taught art at Jefferson Junior High for 31 years. For 26 of those years he coached football, basketball and track. Together we raised three wonderful children, Todd, Kristine (who is

here with us today) and Gretchen. Our children have blessed us with four amazing

grandchildren who range in age from 6 months to 6 years. We’re looking forward

to the arrival of our 5th grandchild in May.

Our story starts like many others. There were signs and symptoms that I overlooked for about 18 months before we finally sought help from a doctor. Dwayne

started misplacing things around the house and a few times he got lost driving to

familiar places in Dubuque. One day he got lost while driving the five miles between

our house and his school—the same route he had driven for 30 years. During that

episode, he pulled over to call me for directions but couldn’t remember how to dial

the phone. He had also started misplacing things, such as art supplies and student’s

assignments, in his classroom. His principal called me because Dwayne was starting

to have anxiety attacks at school. He would get very upset and agitated every time

he misplaced something in his classroom. The principal also told me that Dwayne

was having a lot of trouble learning the school’s new computerized grading system.

Around the same time, we went on a family vacation to France. Dwayne became

very anxious and confused when we visited some of the main attractions that were

crowded with large groups of tourists.

After returning to Iowa, we went to a local internist who performed a lot of tests.

Dwayne went through a full battery of verbal and psychological testing. He saw a

neurologist and underwent an MRI and a spinal tap which confirmed the presence

of the ApoE gene that has been linked to Alzheimer’s. He underwent more

tests . . . I honestly think he went through every medical test in the book! About

six weeks after we started all of the tests he received the diagnosis of Alzheimer’s.

We were in total shock. Dwayne’s neurologist immediately started him on medications for his anxiety and large dose of Vitamin E and Vitamin B6, in addition to

one of the four available Alzheimer drugs.

We told Dwayne’s principal and the decision was made to let Dwayne finish the

remainder of the school year. The principal and Dwayne’s coworkers were very supportive and understanding. At the time, Dwayne had a student teacher who provided day-to-day help. Dwayne retired from teaching that June after 31 years in the

classroom, several years earlier than he had originally planned.

We slowly began to adjust to our changed lives. I continued to work as a billing

specialist in a local radiologists office. We did a lot of planning for the future. We

wrote our wills and signed a Power of Attorney so that I can make health care and

legal decisions for Dwayne as the disease progresses. We saw an advertisement for

the Alzheimer’s Association in the local newspaper and went to a few of their conferences and educational programs. We participated in the Alzheimer’s Memory

Walk to help raise money for local programs and services. Dwayne began volunteering in the Art Department at the local elementary school. He still volunteers

every day from 8:00 a.m. to 3:00 p.m. It helps keep him both mentally and physically active. While he really enjoys his time in the classroom there are moments

that are frustrating for him. Dwayne spent his entire career as an educator. Today

he can’t provide the right answer when a fourth-grader asks for help spelling a common word.

We’ve made additional changes in the last few months to spend more time together as a family and to accommodate Dwayne’s needs. In December, I retired after

19 years at my job in the radiologist’s office. The decision to retire was tough but
29

it had become too difficult for me to hold down a full time job and give Dwayne the

support he needed. Dwayne sees his neurologist every six months. During these visits, Dwayne undergoes verbal and mental testing to track how quickly his Alzheimer’s is progressing. He also visits a memory therapist once a month who helps

him with his recall and thought processes. Dwayne needed to be driven to all of his

appointments because he had given up his car keys about 18 months after being

diagnosed. In addition, I had begun to worry about Dwayne’s safety. He was still

able to use the stove but no longer mowed the lawn. And I was very concerned

about what Dwayne would do once the school year, and his volunteer commitment,

ended. He would be home alone while I was at work all day. Retirement seemed

to be the best option for both of us.

Senator Harkin, we’re here today to thank you and Senator Specter for your outstanding leadership in the fight against Alzheimer’s disease and to support your efforts to increase research funding. We need to stop this disease while we still have

the chance. Dwayne’s father died of Alzheimer’s. My grandmother and an aunt both

suffered from dementia. Dwayne and I worry that we have passed this disease on

to our children and grandchildren.

We know that scientists are on the verge of finding ways to prevent and treat Alzheimer’s and that the actions Congress takes today may save future generations

from this terrible thief that steals memories, disrupts careers and affects millions

of families. We’re scared for the future but grateful for our supportive family and

the good life we’ve had so far. We want to do everything we can to raise awareness

about the disease and the need for research funding. We’ve asked about getting

Dwayne into several research trials but he has a kidney disease and the doctors say

he’s not a good candidate for most of the studies.

On behalf of our entire family, we thank you for giving us the opportunity to

share how Alzheimer’s disease has affected our lives.

Senator SPECTER. Thank you very much, Mr. and Mrs.

Uptegraph. Thank you, Mr. Uptegraph for sharing those thoughts

with us. We know it is not easy for you in any respect, and thank

you, Mrs. Uptegraph for your testimony and for your care for your

husband, and for the model which you are setting for so many million Americans. Thank you.

STATEMENT OF DONALD KURTZ, BLUE BELL, PA

Senator SPECTER. We now turn to Mr. Donald Kurtz, who was

diagnosed with early onset Alzheimer’s disease in August 2001 at

the age of 57. He had spent over 30 years in the financial services

industry, currently volunteers at a local rehabilitation center, and

is active at the local Alzheimer’s chapter early onset support group,

graduate of West Point, served as an air observer in the Vietnam

War, four children, two of whom are still in college. He resides in

Blue Bell, Pennsylvania. Thank you for joining us, Mr. Kurtz, and

we look forward to your testimony.

Mr. KURTZ. Thank you, Senator Specter. Good morning, Senator

Specter and Senator Harkin. I am honored to be here today representing the great State of Pennsylvania and the Delaware Valley

Chapter of the Alzheimer’s Association. My name is Donald Kurtz.

I sit before you as a devoted father of four children, a proud graduate of West Point, and as a 59-year-old man with Alzheimer’s disease.

I am aware that on the outside it does not appear that there is

anything wrong with me. Maybe I remind you of someone, a friend,

a neighbor, perhaps even a colleague. Twenty months ago I was a

lot like you and your colleagues. I was at the top of my professional

career at a leading financial services firm, supporting my family

and awaiting hefty tuition bills for talented children who were

about to attend two of this country’s top universities.
30

Then a neurologist delivered the news that changed my life—Alzheimer’s disease. It was August 2001. I was 57 years old. While the

diagnosis itself was a shock, it did provide an explanation for the

memory problems I had been experiencing for approximately 2

years. When I was in my midfifties I started losing my keys and

then my glasses on a regular basis. I came home from work one

night, pulled my car into the garage, and left the engine running.

I was constantly leaving my keys in our front door or in the mailbox.

My family started to notice my behavioral changes, and my

daughter suggested seeing a neurologist. The neurologist examined

me and we discussed the possibility of Alzheimer’s disease, but the

neurologist concluded that I was not in the right age group for my

symptoms to be explained by Alzheimer’s. However, after a battery

of tests, an interview with the psychiatrist, and an MRI, the neurologist concluded that I did have Alzheimer’s disease.

The economic devastation, especially at this young age, is one for

which I was unprepared. My family needed my financial stream to

pay for university tuition and expenses. My eventual in-home care

and final institutionalization was never planned for, nor in my

budget. As our Alzheimer’s population continues to grow, we will

not be able to support the residential needs of this growing population. Today, 10 percent of 65-year-olds have Alzheimer’s disease,

and if we live to the age of 85, 50 percent of us will have Alzheimer’s disease. How will we accommodate the needs of this population?

Despite being knocked down in the prime of my life I never

adopted a negative attitude or asked, why me? Instead, I thought

back to my West Point training and decided that I would fight

back. I made the decision to speak out, to be up front with people,

and to do whatever I could do to educate people about Alzheimer’s

disease and the impact it has on individuals and families when it

strikes so young.

I contacted my local chapter of the Alzheimer’s Association and

joined an early onset support group. I met peers who were experiencing the same problems I was, the lack of services and systems

to support younger people with Alzheimer’s. One of the men in my

support group who could no longer drive had to drop out of a local

art therapy program because he did not meet the age requirements

of the available transportation assistance programs.

Today, I am under the care of two excellent neurologists at the

University of Pennsylvania Medical Center and the Ralston House

Memory Disorders Clinic. I am active in my Alzheimer’s support

group and I volunteer 2 days a week at the Chestnut Hill Rehabilitation Center. I tell the patients I have Alzheimer’s disease, which

brings them very close to me. I know how fortunate I am. I have

a loving family, I have Roz, my care partner and the woman who

has been by my side throughout this entire journey. She is here

with me today.

Senator Specter, I served as an air observer in Vietnam from

1967 to 1968. I know what war in Iraq will mean for the women

and men who have responded to their Nation’s call, and for their

families at home. I participated in 51 missions in Vietnam. Today,
31

I am on one single mission to urge Congress to increase the Federal Government’s investment in research.

PREPARED STATEMENT

Some may say that in a time of war we have to put off other

things we would like to do, but I am here in Washington to send

the message that we cannot abandon our most urgent priorities at

home. One of these is the fight against Alzheimer’s disease. We

must win this fight, not just for me and the more than 20 other

individuals in this room, but for my children, grandchildren and for

yours.

I thank you for your steadfast leadership on behalf of the Alzheimer’s cause, and for the honor of appearing here today.

[The statement follows:]

PREPARED STATEMENT OF DONALD KURTZ

Good morning Senator Specter and Senator Harkin. I am honored to be here

today representing the great state of Pennsylvania and the Delaware Valley Chapter of the Alzheimer’s Association.

My name is Donald Kurtz. I sit before you as a devoted father of four wonderful

children, as a proud graduate of West Point Military Academy and as a 59-year old

man with Alzheimer’s disease.

I am aware that on the outside, it does not appear that there is anything wrong

with me. Maybe I remind you of someone—a friend, a neighbor, perhaps even a colleague. Twenty months ago I was a lot like you and your colleagues. I was at the

top of my professional career, in a senior leadership position at a leading financial

services firm, supporting my family and awaiting hefty tuition bills for talented children who were about to attend two of this country’s top universities. Then a neurologist delivered the news that changed my life—Alzheimer’s disease. It was August 2001 and I was 57 years old. I still remember what I did after I left the doctors

office that terrible day. I went to the gym and got on the treadmill thinking that

if I got the blood rushing to my brain, I could start to slow down the progress of

the disease.

While the diagnosis itself was a shock, it did provide an explanation for the memory problems I had been experiencing for approximately two years. When I was in

my mid-50’s, I started losing my keys and then my glasses on a regular basis. One

day I drove into Center City Philadelphia and left my car in a public parking garage

with the engine running all day. Not long after that, I came home from work one

night, pulled my car into our garage and again, left the engine running. I was constantly leaving my keys in our front door or in the mailbox. My neighbor would return them to me and say ‘‘looks like you’ve done it again, Don.’’

My family noticed the strange behavior too. When my kids were growing up we

always played games together. One day I sat down to play Backgammon with my

daughter, like I had done hundreds of times before. Only this time I couldn’t remember how to set up the board. Not wanting to worry my daughter, I brushed off

the lapse by explaining that I was just tired. Another time I was playing Scrabble

with my other daughter and I couldn’t add up the points for the simple four or five

letter word that I had spelled. My daughter immediately knew that something was

wrong and made an appointment for me to see a neurologist.

The neurologist examined me and we discussed the possibility of Alzheimer’s disease. But the neurologist concluded that I wasn’t in the right age group for my

symptoms to be explained by Alzheimer’s. However, after a battery of tests, an

interview with a psychiatrist and an MRI, the neurologist concluded that I did have

Alzheimer’s disease.

The news was devastating to my family and friends. I chose to write a letter to

my supervisor at work, explaining that I had early-stage Alzheimer’s disease. My

supervisor was shocked but supportive. At the time, I was a first vice president in

the local office of one of the best-known global financial services firms. I had spent

over thirty years within this industry only to have my dreams of continuing the

work I loved come to a drastic halt.

The economic devastation especially at this young age is one for which I was unprepared. My family needed my financial stream to pay for university tuition and

expenses. My eventual in-home care and final institutionalization was never
32

planned for and not in my budget. As our Alzheimer’s population continues to grow

we will not be able to support the residential needs of this growing population.

Today, 10 percent of 65 year olds have Alzheimer disease and if we live to the age

of 85, 50 percent of us will have Alzheimer’s. How will we accommodate the needs

of this population?

Despite being knocked down in the prime of my life, I never adopted a negative

attitude or asked, ‘‘Why me?’’ Instead, I thought back to my West Point training and

decided that I would fight back. I made the decision to speak out, to be upfront with

people and to do whatever I could to educate people about Alzheimer’s disease and

the impact it has on individuals and families when it strikes so young. I contacted

my local chapter of the Alzheimer’s Association and joined an early onset support

group. I met other men with early onset Alzheimer’s who were in deep denial about

their diagnosis. I also met peers who were experiencing the same problems I was—

the lack of services and systems to support younger people with Alzheimer’s. One

of the men in my support group who could no longer drive had to drop out of a local

art therapy program because he didn’t meet the age requirements of the available

transportation assistance programs.

I began to look for a way to stay active and give back to those who were worse

off than I was. I started volunteering at Central Montgomery Medical Center, visiting sick patients, keeping them company and helping out at meal times. I also volunteered in a children’s day care program at Montgomery County Community College.

Today I am under the care of two excellent neurologists at the University of Pennsylvania Medical Center and at the Ralston House Memory Disorders Clinic. I see

my doctors every six months. I’m active in my Alzheimer’s support group and I volunteer two days a week at the Chestnut Hill Rehabilitation Center. I visit with the

patients and comfort them when they are feeling bad. I tell them I have Alzheimer’s

disease. I love my volunteer work and am lucky that I get to spend time with such

wonderful people. I am still driving but only in areas that I know very well. I gave

my word to my doctors and family that I would not drive in unfamiliar cities or

towns. However, I dread the day that I have to give up the car keys because among

other things, it will mean that I can no longer do the volunteer work.

I know how fortunate I am. I have a loving, supportive family. I have Roz, my

care partner and the woman who has been by my side throughout this entire journey. She’s here with me today. I enjoy spending time with my three grandchildren

and like Dwayne and Mary Jean sitting next to me, am eagerly awaiting the birth

of another grandchild in May.

Senator Specter, I served as an Air Observer in Vietnam from 1967–1968. I know

what war in Iraq will mean, for the women and men who have responded to their

nation’s call and for their families at home. I participated in 51 missions in Vietnam. Today I am on a single mission—to urge Congress to increase the federal government’s investment in Alzheimer research. Some may say that in a time of war

we have to put off other things we’d like to do. But I’m here in Washington to send

the message that we cannot abandon our most urgent priorities at home. One of

these is the fight against Alzheimer’s disease. We must win this fight not just for

me and the more than 20 other individuals with Alzheimer’s in this room but also

for my children and grandchildren and for yours. I thank you for your steadfast

leadership on behalf of the Alzheimer’s cause and for the honor of appearing here

today.

Senator SPECTER. Thank you very much, Mr. Kurtz. We know it

is not easy to provide that testimony, but I think it is very important for people to hear real life experience, and we thank you, Mrs.

Kurtz, for being at your husband’s side.

STATEMENT OF MIKE MARTZ, COACH, ST. LOUIS RAMS

Senator SPECTER. We now turn to Mr. Mike Martz, head coach

of the St. Louis Rams. He has held that position since February 2,

2000, before he was the team’s offensive coordinator receiver’s

coach, designed the offensive strategy for the Rams’ 1999 Super

Bowl win, and we all know what a dynamic offensive strategy that

was, summa cum laude graduate from Fresno State, where he

played tight end.

Mr. Martz has become familiar to television viewers everywhere

because the TV cameras always scan the coach on the sidelines to
33

see the emotional reaction after a good play or a bad play. I have

never understood why there was so much scanning. I can understand in your case, Mr. Martz, because you are so photogenic, but

otherwise it is hard for me to understand why we see so much of

the coaches and so little of the spectacular receivers like Terrell

Owens.

They never scan Mr. Owens because they make them keep their

helmets on under the league rules. I can’t understand that either.

Well, onto the serious business at hand, Mr. Martz. We appreciate you joining us and look forward to your testimony.

Mr. MARTZ. Thank you, Chairman Specter, and good morning

Senator Harkin and Members of Congress here today. It is a real

privilege for me to be here to offer this testimony. Like so many

others in this room, I experienced the devastating effects of Alzheimer’s. My mother had Alzheimer’s the last 4 or 5 years of her

life, and it slowly robs you of your mind, your dignity, and eventually your life, and we have to do whatever we can to stop this, and

I am here today to ask you to provide whatever efforts that you can

to help us stop this dreaded disease.

Just a few moments, if I can, and I know that I am only allowed

3 minutes or so. I could talk to you all day about the effects of this

and what it did to this family and to my mother, but my mother’s

name was Betty Martz. She raised four boys. Originally we had

five in the family. The oldest one was killed in a car accident.

My father left, and she was there with young boys that she had

to raise on her own. She did not have a penny. She went to work.

She is a professional lady. She became a coordinator of volunteers

at Mesa Vista Psychiatric Hospital in San Diego, and she worked

there for well over 20 years and did a terrific job. She was a very

intelligent, very loving, and very caring person. She did not remarry. She elected to raise her four boys, and she spent the weekends, her free time back at the hospital providing care for the people at the hospital. We shared holidays with her patients that she

cared for as well at home with the rest of the family.

As she retired, she moved out next to my older brother a few

miles away, Fritz, and she started to settle in at about age 70, 72

into retirement and enjoy her grandchildren and some of the success that we were beginning to have.

Then, as usual, as you have heard so many times, things began

to slip for her. She started to lose her memory. She lost her way

out of the neighborhood. She had a hard time. She would turn the

stove on to light a cigarette, would leave the stove on. We became

very concerned. She was originally diagnosed with dementia. They

said that the very best thing we could do for her was keep her in

that environment. Well, my oldest brother then would have to be

her caregiver. He was there every morning and every night after

work, and it took a toll on him, as I know so many people in this

room are aware of, and eventually this thing slid downhill.

She had two dogs with her. She would have 20 or 30 cups of food

out for these animals. Every salesman that came by the door she

bought from, a new roof, it did not make any difference, whether

it was encyclopedias, she bought, and my brother would have to go

back and get the money back from all these things, and eventually—my brother ran a crew for the power company in San Diego.
34

She would call him out in the field 20 or 30 times a day. She would

call him at night. She was scared to death that somebody was

breaking into the house.

This thing slid down so far that we just had to put her into some

sort of a part-time care unit, and the only way she would go, because she refused to leave her home, is we took her living room and

put it exactly in the room, just like it was at her house. My brother

took her home while we did this, and then he brought her, and it

worked. She did not realize that this was not her home.

Well, she was there very briefly, probably 2 to 3 months. The

doors were open. She would wander into other patients’ rooms, and

for whatever reason she would end up with some of their articles

from that room in her room and they just could not have her there

any more. She went downhill within 2 months. She went into a

full-care unit.

The last time that I saw her alive was in 1996. I was with the

Redskins. It was right before the season started, and I went to visit

her in the full-time care. It is a lockdown unit, and as I saw Mom

and took her through the rose garden—she was an avid gardener.

She loved to garden—she got down on her hands and knees and

started to pull weeds out of the rose garden there. She was convinced that that was what she needed to do. She would pick up the

twigs, and I would have to take them from her and explain to her

each time who I was. She had no idea who I was.

Finally, as I took her back to her room she stood at the door in

her gown and she started to sob because she just knew that she

needed to know me, she should know me, but she kept asking who

I was, and I said, I am your son, Mike, and then as I told her I

was going to leave, obviously she started to cry and said, Mike,

can’t you please take me with you. I could not take her with me.

That was the last time I saw her alive.

Fortunately, 6 months later, lung cancer did take her life so that

she did not have to continue to suffer with Alzheimer’s, and I saw

her in a coma and she passed quickly, and I believe that that was

a blessing.

There are many things that she missed out on, that we missed

out on as a family. She never saw my oldest son graduate from college whom she was so close to. She never got to experience my success as an NFL coach, or becoming a head coach, or the Super

Bowls, or any of those things that were so important to her, and

she was such a terrific football fan. She missed all of those things,

and that is my biggest regret.

The most devastating effect of this in my mind is to see someone

so vibrant, so full of life slowly diminish, but there is one other aspect to this that has been touched on here today, and I would like

to bring this up. My brother, if there is somebody in a family that

has Alzheimer’s, there is always somebody that is responsible for

that individual, and that care goes on.

My oldest brother was responsible. He was there day and night

for her, provided constant care for her. Two years after she died,

the stress of the 4 years, eventually he suffered a heart attack, and

it is just absolutely brutal.

I know that this is such a tragic disease that whatever we can

do to stop this disease—I know that we talked about, listening in
35

here today, how long will it take to cure it. I do not know how long

it is going to take to cure it. All I do know, we have to do whatever

it takes, and that is a term that we use with our players, and

Terrell will know this.

PREPARED STATEMENT

We have to do whatever it takes to stop this disease, because it

will become, as these baby boomers approach that age it will become and is on its way to being a national tragedy. I would ask

you to please not drop the ball on this thing. We can beat this disease. There is a tremendous game plan there in front of you. All

we have to do is get your support and your commitment for this

game plan and we can whip this disease, I know we can.

The clock is running, ladies and gentlemen, and it is not going

to stop until we cure it.

[The statement follows:]

PREPARED STATEMENT OF MIKE MARTZ

Good Morning Chairman Specter, Senator Harkin and distinguished members of

Congress. I consider it a privilege to be here today. I am Mike Martz, beginning my

fourth season as head coach of the St. Louis Rams. I share a common experience

with others attending this hearing. I, too, have experienced first-hand the devastating affects of Alzheimer’s. I watched my mother suffer from the disease for

many years.

As a coach, I firmly believe that an aggressive offense wins football games. As a

son who watched his mother suffer, I strongly believe a strong offense by Congress

is the only way we are going to beat Alzheimer’s, the toughest opponent I have

faced. Although life is far more precious than any football game ever played, I am

here to give you the same message I give my players—take the ball and run. Together, as a team, we can beat this thing.

Today I would like to take a moment to tell you about my wonderful mother,

Betty Martz. She raised my four brothers and me mostly on her own. Ironically, she

worked incredibly long hours in healthcare—as the volunteer coordinator at Mesa

Vista Hospital in San Diego. She was a terrific woman, very energetic and someone

everyone enjoyed meeting. She was incredibly strong, a trait you would expect ANY

mother of FIVE boys to possess.

We so looked forward to the day she retired as she would have time to finally

relax and enjoy life. She elected to remain in her small, but comfortable home in

San Diego with her two little dogs. Two of my brothers lived close and visited her

often.

Mom was just 68 years old, and really beginning to enjoy her retirement, when

we noticed that she had become forgetful—unusually forgetful. I will always remember that day when her doctor diagnosed her with Alzheimer’s. My first thoughts

were that this only happens to someone else’s mother, not my strong mom who had

always been so healthy. After her diagnosis, Mom, the always independent woman,

insisted that she stay in her home. She managed for a short time with visits from

my brothers, however, she slid downhill quite fast.

Though she had always kept a clean house, now somehow she forgot to do it. She

stopped cleaning, and her home was in total disarray. She was still driving, but

could not find her way out of the neighborhood. We had to disconnect her car battery to keep her home. She began having difficulty with her medications. She had

one of those pill boxes labeled with the days of the week, but at times she would

take 3 days worth of pills in one morning.

Eventually, due to Alzheimer’s, she was unable to care for her two small dogs.

At one point, she had 20 bowls of food set out for them. Those tiny dogs blew up

like balloons, but Mom did not notice. Mom, who was as brilliant a person as I have

ever known, even began making absurd purchases from door-to-door salesmen.

My brother Fritz was a superstar caregiver to our mother. Often, Mom would call

him up to 20 times a day—so many calls for a man running a field crew for the

power company. Sometimes she would call him at 3:00 in the morning to tell him

about imaginary things that were happening to her. She would ask him to come

over to protect her against imaginary demons.
36

The years of caregiving were a huge drain on my brother—it took him two years

to recover from the incredible the stress and strain of being her primary caregiver.

Fritz was constantly there for her, but this disease nearly killed him—he suffered

a heart attack as a result.

After Mom could no longer manage on her own, we had to move her to a longterm care facility. By that point, she was running through all of her savings, and

certainly would have gone through everything if cancer had not taken her life. As

tragic as this may sound, the cancer seemed so much less harsh for Mom after having watched her fight the hopeless battle with Alzheimer’s for so many years. You

see, this disease robbed her of her life and her family.

The difficult thing with Alzheimer’s is dealing with something over which you

have absolutely no control. With many other diseases, there is a glimmer of hope

and you maintain the ability to communicate and cope as a family. With Mom, we

lost that ability to communicate even on the most simple level. We lost the opportunities to laugh and share memories. We were lucky if she could even put names and

faces together. It was almost as if she had returned to being an infant—at a point

in her life when she should have been enjoying retirement and grandchildren she

had so looked forward to spoiling. She missed many life events that would have

meant the world to her—seeing her first grandson graduate from college or witnessing the successes of her sons that she worked so hard to raise. My biggest regret is that my mother did not get to see me become a head coach in the NFL or

to sit in the stands and cheer when I finally fulfilled a lifelong dream of coaching

in the Super Bowl. It would have meant so much to her and to me knowing that

her hard work paid off.

Now, I fear for my family and future generations. Imagine being hit with Alzheimer’s in the prime of your life. I do not want Alzheimer’s disease to cause my

family the grief and pain that my brothers and I suffered. One of my biggest fears,

though, is not being there for my children and grandchildren. After the experience

with my mother’s battle with Alzheimer’s disease, I cannot imagine how I could

handle anyone else in my family being diagnosed with this dreadful disease.

Before my mother was affected, I did not understand this disease. I am here to

tell you that both the financial impact and the emotional impact are devastating for

the patients and their families. I surely was not prepared for the emotional impact—watching my own mother lose her mind and her dignity. As of now, there is

no hope for patients or their families. Ladies and gentlemen, it is so important; we

MUST find a way to stop Alzheimer’s. My understanding is that researchers are

close to the answers. Additionally, we must discover a way to help the people who

have this disease now and cannot afford the care and treatment they need.

In St. Louis, we have found that a high powered offense wins football games. Now

is the time for Congress to line up on the offensive against Alzheimer’s disease. As

you know, successful strategy for winning games is in a playbook. The Alzheimer’s

Association has provided you a real life playbook, ‘‘A Race Against Time: A National

Program to Conquer Alzheimer’s Disease.’’ You have heard today what needs to be

done and how quickly it needs to happen. I am here to ask you to execute the game

plan that will defeat Alzheimer’s. It is time for Congress to take the offense against

Alzheimer’s disease.

Thank you for your time and support.

Senator SPECTER. Thank you, Mr. Martz, for sharing with us

your experience, the tragedy with your mother. We like your football metaphors—whatever it takes, the clock is running, don’t drop

the ball. We are dedicated to it and the Congress and the administration have put money where their mouths are in more than doubling NIH funding, and we are determined to find the answer, and

that is why we have asked for more specifics.

STATEMENT OF TERRELL OWENS, WIDE RECEIVER, SAN FRANCISCO

49ERS

ACCOMPANIED BY MARILYN HEARD

Senator SPECTER. We turn now to Mr. Terrell Owens, well known

wide receiver for the San Francisco 49ers, drafted in 1996 out of

the University of Tennessee, Chattanooga. In seven seasons with

the 49ers, Mr. Owens has made two Pro Bowl appearances, broken

49ers’ and league records and is one of the premier offensive play-
37

ers in the NFL. In the year 2001, he earned first team All Pro honors from the Associated Press, and a career high in league-leading

16 touchdown receptions. His grandmother, Alice Black, has Alzheimer’s disease and resides in a nursing home in Alabama. Mr.

Owens is accompanied by his mother, Ms. Marilyn Heard.

This is a challenge for you, Mr. Owens, to appear on NFL highlights. The NFL film crew is here today as is ESPN and Senator

Harkin and Senator Murray and I are sure you will rise to the occasion.

The floor is yours. It is nice to see you without your helmet on.

Mr. OWENS. Good morning, Senator Specter and Senator Harkin.

I am definitely grateful to be here this morning, and to all the

Members of Congress, thank you for having me here today, and

while I am here in Washington my grandmother, Alice Black, is in

a nursing home in Talladega, Alabama, and at this point she only

remembers me, her late husband, and the woman beside me,

Marilyn Heard, which is her daughter and my mother.

Professionally I have been able to provide for her financially. My

mom has been her caregiver, and it came to my attention around

1999, when I was attending a charity event in San Diego for a

league mate of mine, and my mom called me, and I was about to

go to the function and I noticed a change in her voice and she said

my grandmother had been doing some things as far as forgetting

stuff, and just wandering off, and she said she wanted her to talk

to me.

I know the regular tone in my grandmother’s voice, so once she

got on the phone she sounded like, just a slowed down tape recorder, as if her batteries were running dead, and my mom got on

the phone, and she was crying, and I tried to hold her up as best

I could, and as soon as I hung up the phone I just burst into tears,

because this is a lady that has raised me to be the person I am

and molded me into the person I am.

I have always had the work ethic. She taught me to work hard,

speak my mind, and speak strongminded. My grandmother is definitely the reason I am here today, other than her illness, and I

think despite all the success that I have had on the football field

I feel basically powerless as far as helping her and doing all the

necessary things that I can to do for her, and I think along with

many people here in the audience and Coach Martz and myself, I

am definitely hoping and praying for the increase in funding for

Alzheimer’s research.

PREPARED STATEMENT

During last year I served as a celebrity team chair member of

the Alzheimer’s Association of Northern California and the Northern Nevada Memory Walk, and I definitely plan to serve again.

Along with myself, Coach Martz and everyone here today that has

been affected by the disease, we ask that you increase the funding

to keep our loved ones around mentally as well as physically.

Thank you.

[The statement follows:]

PREPARED STATEMENT OF TERRELL OWENS

Good morning Senator Specter and Senator Harkin. I am honored to be here.
38

My name is Terrell Owens. I am here to talk to you about an incredible woman

named Alice Black. Alice is my grandmother and she has Alzheimer’s disease. While

I’m here in Washington, she is in a nursing home in Talladega, Alabama. At this

point, she remembers mainly me, her late husband and the woman who is here with

me today, Marilyn Heard, her daughter and my mother.

Professionally, I have achieved one of my dreams—I play football in the National

Football League. I am a wide receiver for the San Francisco 49ers. In my seven seasons in the NFL, I have caught hundreds of passes, scored many touchdowns, set

numerous 49er and NFL records, and been to the Pro Bowl three times. Despite this

success, I am basically powerless to help a woman that I love very dearly.

Football has provided me with a certain amount of fame and privilege; however,

no amount of fame or privilege can heal my grandmother. While I gladly pay her

medical and health care expenses, I cannot change the fact that she has Alzheimer’s

and continues to suffer.

My grandmother helped mold me into the person I am today. She helped raise

me, my brother, and my sisters while my mother worked numerous jobs and sewed

clothes on the side. Through the way she lived her life, my grandmother passed

many special gifts to me. She was strict when necessary, but always caring and

often playful. She taught me to work hard, to be proud of who I am, and to never

back down or take a back seat to anyone. Many of her so-called old-fashioned beliefs

became the bedrock for my success-self discipline, work ethic, and focus. Moreover,

because of my grandmother’s and my mother’s steadfast convictions, I am never

afraid to honestly speak my mind about matters that are important to me. Finally,

my grandmother’s indomitable spirit (she would often cite Scripture, sing hymns,

and make sure that I attended church) created a similar spirit within me that gives

me the strength to carry on as she continues to suffer.

One of the real tragedies of Alzheimer’s is the isolation it produces. The woman

who helped raise me is barely aware of my accomplishments or my position in life.

I am proud to Alice Black’s grandson and I simply wish that she was able to celebrate what we have become, where we are going, all the while remembering where

we have been.

During 2002, I had the honor of serving as the celebrity team chair for the Alzheimer’s Association Northern California & Northern Nevada Memory Walk. I plan

to serve again this year as the celebrity chair for the 2003 Memory Walk. Through

that experience, I filmed a public service announcement for the Alzheimer’s Association and was able to make other contributions to the local Alzheimer’s chapter. I

know there are millions of others who have suffered with a loved one stricken with

Alzheimer’s just as my family and I have suffered. I am truly humbled to have been

chosen to represent many of those persons here today. I believe I speak for all of

us when I ask this Committee to help us help those who cannot help themselves.

I know what it takes to be successful in sports. My success is a direct result of

the hard work that I put in during the off-season and off the field during the NFL

season. When a game is on the line, I want to be the player my teammates look

to make a big play or to score a touchdown for my team.

Unfortunately, I cannot go out and make a big play or score a touchdown that

will cure my grandmother and the millions of others who suffer from Alzheimer’s.

However, I am here today as part of a team that can work together to defeat Alzheimer’s. I am asking the Senators on this Committee and President Bush to help

me, Coach Martz, and the millions of persons we represent to team with us to defeat

Alzheimer’s. Together, we can make a difference and defeat this horrible disease

once and for all.

There is really only one thing I care about in this world—my family. It has been

devastating for me and my family to watch my grandmother slip into the ravages

of Alzheimer’s. I know that you have many difficult decisions to make and that you

must always balance many competing priorities and interests. Part of the reason I

decided to appear today in front of this Committee is because of the enormous respect I have for it and the work it does. Thus, I urge you for my grandmother and

for all of the other families that have been affected by this terrible disease, to increase funding for Alzheimer’s research by $200 million this year and to keep Congress on track toward the goal of $1 billion for research.

Senator SPECTER. Thank you very much, Mr. Owens, for sharing

with us your views. People know you and people listen, and I think

it will be very, very helpful.

Because of the limited time I am going to waive my round of

questions and turn directly to Senator Harkin.
39

Senator HARKIN. Thank you very much, Mr. Chairman. I just

want to join with you and thank all of our witnesses who are here

on this panel for your personal stories. We need to hear these, and

the public at-large needs to hear this, because you know, we talk

about dollars and budgets and all that kind of stuff, but what it

comes down to is human beings and families, and what it does to

families.

We all have our own personal stories of people we know and love

that have had Alzheimer’s or have Alzheimer’s. I just went to dinner a week ago Sunday with a boyhood friend of mine who I grew

up with, and he is now in a nursing home, and I took him out to

dinner and several times during the evening he kept asking me

about where we had met, and who was I, and it is just a terrible

thing to see happen to someone.

But I thank you all for your personal stories, and I thank the

Uptegraphs. Thank you, Dwayne, for being here and sharing with

us, and Mr. Kurtz, and Terrell Owens. My gosh, I hope I can at

least get to shake your hand on the way out. I have got to tell my

staff I shook your hand anyway, because we have watched you play

many, many times, and you are a great inspiration, and it does

mean something to have someone of your stature here today and

championing a cause like this because people do look up to you.

A lot of young people look up to you, and if you are espousing

this cause and leading this, believe me, it just has great reverberations all over the United States, so I thank you for that.

Coach Martz, thank you very much again for being here and

sharing with us also, and again we are a sports-minded Nation. We

all love sports, and I know sports figures endorse different products

and things like this, and I understand, that is fine, that is good,

but we need you on this, too, and I cannot tell you how proud I

am of both you and Terrell Owens for being here, because you can

just have a great, great effect on the people that we have to go to

then to get the support to get the kind of things we need through

here, so thank you for taking the time and effort to be here. Thank

you for your stories, and keep on leading the cause on this.

Thank you all very much.

Senator SPECTER. Thank you, Senator Harkin.

I just want to tell you, Mr. Owens, Senator Harkin appears more

on C–SPAN than you do. They have a spot reserved for me on C–

SPAN. It is 3 a.m.

They have reruns. Senator Harkin and I have a great following

among America’s insomniacs.

People can see you and Coach Martz and you on prime time.

Well, we thank you very much for coming, Mr. and Mrs.

Uptegraph, Mr. and Mrs. Kurtz, Mr. Owens, Mr. Martz, for talking

about your own personal experiences. It tells something to America

when we hear it from the people who suffer from Alzheimer’s, from

Mr. Uptegraph and Mr. Kurtz, to see the loyalty and bravery and

steadfastness of their wives, and when Mr. Martz talks about his

mother in such emotional, direct terms and what it meant to her

never having seen his great accomplishments, and Mr. Owens talks

about his grandmother lovingly, and here with his mother, and we

are committed to funding for Alzheimer’s and these other terrible
40

maladies, and the Congress and the President have supported it,

and we will continue the fight.

We have a large group from Pennsylvania. I would like to note

the presence of Ms. Orion Reed, noted journalist and television star

from Pennsylvania, who has been a witness here, an official Alzheimer, having suffered with the ailment in her family as well, and

the folks from Pennsylvania in the first four rows have requested

a photograph, and we will be coming down to do that right now.

PREPARED STATEMENT

We have received a statement from the Center for Senior Health,

Jefferson College of Health Professions, Thomas Jefferson University that will be made part of the hearing record.

[The statement follows:]

PREPARED STATEMENT OF THE CENTER FOR SENIOR HEALTH, JEFFERSON COLLEGE OF

HEALTH PROFESSIONS, THOMAS JEFFERSON UNIVERSITY

Mr. Chairman and Members of the Committee, thank you for the opportunity to

submit testimony for this most important hearing on Alzheimer’s Disease and Related Disorders (ADRD) as you begin to consider funding priorities for fiscal year

2004.

My name is Laura N. Gitlin, Ph.D., and I am the director of the Center for Senior

Health (CSH), Jefferson College of Health Professions of Thomas Jefferson University, Philadelphia, Pennsylvania. I direct an applied research center with over 15

years of continuous funded research on the devastating effects of Alzheimer’s disease and related disorders on family caregivers. The Center’s nationally and internationally recognized program of research is dedicated to developing and testing the

most innovative and promising interventions to help families provide quality care

to persons with dementia, alleviate the stressors of caregiving, and support the daily

function of persons with dementia to enable them to remain at home with life quality. Through NIH funded clinical trial research, my Center has successfully identified and tested specific strategies to help families manage the day-to-day challenges

of assisting persons with progressive memory loss.

Despite increasing national research and policy attention on caregivers, family

caregiving remains a significant public health concern. Most importantly, there remains a gap between what we have learned from research and what is currently

practiced by health and human service professionals. There is a tremendous need

to support projects that translate the most promising tested programs for family

caregivers into effective clinical practices and training of direct service providers. In

order to provide state-of-the-art services in home and community settings,

translational research demonstration projects are a critical next step in our efforts

to support persons with this disease and their family members in the home, the

least costly setting of care.

NUMBER OF PERSONS WITH ADRD AND FAMILY CAREGIVERS

Mr. Chairman, over 4.5 million Americans are currently afflicted with ADRD.

This number is expected to increase exponentially with the aging of our population,

and particularly as the baby boom generation enters retirement. After the age of

65, the number of persons with dementia doubles each decade such that by the age

of 85, 50 percent of persons have this disease. Persons with ADRD live an average

of 4 to 20 years from the time of diagnosis. The vast majority of persons with ADRD

live at home and are cared for by family members for the duration of the disease.

That is, the home, a private residence, is the primary setting in which persons with

ADRD live and in which the disease process must be managed.

Pennsylvania has one of the fastest growing elderly populations and serves as a

microcosm of national trends. The fastest growing population in Pennsylvania are

older adults 65 years of age and older. This group represents close to 15.6 percent

of the population, significantly higher than the national average (12 percent). The

Alzheimer’s population represents 16 percent of the elderly in Pennsylvania, thus

presenting a significant public health concern and rising health care costs in this

state alone.

Millions of American families provide help to older people with dementia. It is estimated that in the near future, one out of four people will be a family caregiver.
41

For some family members, the caregiving role lasts for many years and even decades. Moreover, caregivers are increasingly asked to perform complex tasks similar

to those carried out by paid health or social service providers. As the disease progresses, families find themselves socially isolated and unable to access needed resources including education, respite and assistance from trained health professionals.

THE PERSONAL AND ECONOMIC COSTS OF FAMILY REGIVING

Family regiving often occurs at great personal cost and involves the provision of

extraordinary care, exceeding the bounds of normal family relationships. Research

has consistently shown that key outcomes of the caregiving experience include psychological distress and burden, and psychiatric morbidity such as depression.

Caregiving may also compromise physiological functioning and increase caregiver

risk for physical health problems. Studies show for example that caregivers are less

likely to engage in preventive health behaviors, show evidence of decrements in immunity measures, exhibit greater cardiovascular reactivity and slowing of wound

healing, and are at increased risk for serious illness. Most significantly, family caregivers who are stressed by daily caregiving are at risk for mortality. Consequently,

family members themselves often become the ‘‘hidden patients’’ who experience a

range of negative outcomes such as emotional distress, clinical depression, poor

health, fatigue, financial burden and a higher rate of mortality compared to noncaregivers.

The economic value of family caregiver services and the costs of caregiving to U.S.

business in terms of decreased productivity by employees burdened with caregiving

is substantial. The value of caregiver services has been estimated to be $197 billion

per year (1997 dollars). The aggregate costs of caregiving in lost productivity to U.S.

business is conservatively estimated as $11.4 billion (1997 dollars).

THE ROLE OF FAMILY CAREGIVERS

Individuals with ADD, particularly at the moderate to severe stages of the disease, typically require hands-on assistance with daily care such as grooming, bathing, eating, dressing, preparing meals, and transferring from bed to chair. Moreover,

dementia patients usually require constant oversight to assure their own safety and

well-being. Additionally, families must contend with many troublesome behaviors

that can be difficult to manage such as agitation, repetitive vocalizations, resistance

to care, wandering and trying to leave the home, awakening at night, and combativeness. These behaviors pose the most significant burden to family caregivers. Research has shown that families need access to and can benefit from education, social

support and most importantly, in-home training in particular strategies which help

to minimize the occurrence of these troublesome behaviors.

STRATEGIES FOR HELPING FAMILIES

The accumulating evidence of the negative effects of caregiving has stimulated the

development and testing of numerous intervention programs. The first wave of

intervention studies was primarily psychosocial, examining the impact of support

groups, individual counseling, and education. Evidence was mixed with some studies

showing only modest therapeutic benefits. A key finding was that programs designed for individual caregivers were more effective than group programs suggesting

that providing hands-on assistance to families, particularly in the home, and customizing strategies to their needs may be necessary in order to effectively support

their efforts. Recent research using rigorous randomized controlled trial designs

have evaluated a broader range of intervention programs involving individual or

family counseling, case management, skills training, home environmental modification, behavior management and combinations thereof. The evidence from these studies is very promising.

Our research has shown in particular that an occupational therapy in-home intervention involving education, skills training, and home environmental modifications

effectively reduces caregiver burden, time spent in daily oversight, the occurrence

of problem behaviors, and can delay functional decline in persons with dementia.

Strategies such as modifying the home environment to assure safety, teaching effective communication approaches with the dementia patient, training caregivers in

setting up daily routines and simplifying tasks such as dressing to facilitate involvement of the dementia patient, as well as instruction in techniques to manage their

own distress, can make a significant and positive difference in the quality of lives

for both the caregiver and dementia patient.
42

NEXT STEPS TO HELP FAMILY CAREGIVERS

A recent survey of 10 States, one of which was Pennsylvania, identified a key

issue to be the shortage of direct care workers to provide needed education and

skills training to family caregivers. Another key issue that was identified is that

States should be given more opportunities to learn about promising practices and

that services for persons with disability, including dementia, should target the family caregiver as well. Thus, the next critical step in helping families cope is to increase the training of direct service providers and translate clinical trial intervention research into public health programs. The development of best practice guidelines and training of health professionals based on proven protocols covering areas

such as home modifications and environmental simplification, caregiver skills training in communication, task simplification and activity engagement and proven caregiver stress reduction and problem-solving techniques are essential. Our research

shows that one health professional group who can truly help both the family caregiver and dementia patient are occupational therapists. Yet, this group needs training in best practices and occupational therapists are not integrated in existing family caregiving programs.

CONCLUSION

Mr. Chairman, I wish to thank you and the committee again for its leadership

and vision in this area. Significant progress has been made in understanding

ADRD, identifying potential pharmacological treatments to control aspects of the

disease process and developing important approaches for early diagnosis. However,

much remains to be done. There is no cure for the disease and families continue

to bear the extraordinary burden of providing hands-on daily care throughout the

course of the disease. Families provide this care at great personal sacrifice that

often results in their own morbidity and in some cases mortality. Significant

progress has been made in identifying intervention strategies that help families cope

with their responsibilities and enable them to keep their loved one at home, the

least costly setting of care. Yet, these strategies have not been translated into clinical practice and are not well represented in service programs. Addressing the challenges of caregiving in American society will require innovative basic research as

well as translational demonstration projects that involve the development of best

practices and training of health professionals, key among them being occupational

therapists.

CONCLUSION OF HEARING

Senator SPECTER. Thank you all very much for being here, that

concludes our hearing.

[Whereupon, at 11 a.m., Tuesday, April 1, the hearing was concluded, and the subcommittee was recessed, to reconvene subject to

the call of the Chair.]

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