[Senate Hearing 108-130]
[From the U.S. Government Publishing Office]
S. Hrg. 108-130
ALZHEIMER'S DISEASE, 2003
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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
__________
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COMMITTEE ON APPROPRIATIONS
TED STEVENS, Alaska, Chairman
THAD COCHRAN, Mississippi ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri PATRICK J. LEAHY, Vermont
MITCH McCONNELL, Kentucky TOM HARKIN, Iowa
CONRAD BURNS, Montana BARBARA A. MIKULSKI, Maryland
RICHARD C. SHELBY, Alabama HARRY REID, Nevada
JUDD GREGG, New Hampshire HERB KOHL, Wisconsin
ROBERT F. BENNETT, Utah PATTY MURRAY, Washington
BEN NIGHTHORSE CAMPBELL, Colorado BYRON L. DORGAN, North Dakota
LARRY CRAIG, Idaho DIANNE FEINSTEIN, California
KAY BAILEY HUTCHISON, Texas RICHARD J. DURBIN, Illinois
MIKE DeWINE, Ohio TIM JOHNSON, South Dakota
SAM BROWNBACK, Kansas MARY L. LANDRIEU, Louisiana
James W. Morhard, Staff Director
Lisa Sutherland, Deputy Staff Director
Terrence E. Sauvain, Minority Staff Director
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Subcommittee on Departments of Labor, Health and Human Services, and
Education, and Related Agencies
ARLEN SPECTER, Pennsylvania, Chairman
THAD COCHRAN, Mississippi TOM HARKIN, Iowa
JUDD GREGG, New Hampshire ERNEST F. HOLLINGS, South Carolina
LARRY CRAIG, Idaho DANIEL K. INOUYE, Hawaii
KAY BAILEY HUTCHISON, Texas HARRY REID, Nevada
TED STEVENS, Alaska HERB KOHL, Wisconsin
MIKE DeWINE, Ohio PATTY MURRAY, Washington
RICHARD C. SHELBY, Alabama 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
C O N T E N T S
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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
Associa-
tion........................................................... 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
ALZHEIMER'S DISEASE, 2003
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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 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.
Chairman, 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 Alzheimer'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:]
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\
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\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.
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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 case-control 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 improved 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 non-human
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.
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 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; CO-DIRECTOR 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, 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:]
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 large-scale 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. 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
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.
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 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 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.
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.
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 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 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.
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 large-scale 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.
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.
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
estimated 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 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 comment 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.
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 multi-component 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 well-being of caregivers. This 3-year renewal builds on the
results of REACH I, a multi-site 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.
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, 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 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 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.
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, 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 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 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. 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 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.
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 long-term 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 players 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.
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.
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 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. 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 non-caregivers.
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.
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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