U.S. GOVERNMENT PUBLISHING OFFICE

49–470 PDF WASHINGTON : 2022

S. HRG. 114–867

THE FIGHT AGAINST ALZHEIMER’S

DISEASE: ARE WE ON TRACK TO

A TREATMENT BY 2025?

HEARING 

BEFORE THE

SPECIAL COMMITTEE ON AGING

UNITED STATES SENATE

ONE HUNDRED FOURTEENTH CONGRESS

FIRST SESSION

WASHINGTON, DC

MARCH 25, 2015

Serial No. 114–03

Printed for the use of the Special Committee on Aging

( 

Available via the World Wide Web: http://www.govinfo.gov
(II) 

SPECIAL COMMITTEE ON AGING

SUSAN M. COLLINS, Maine, Chairman

ORRIN G. HATCH, Utah

MARK KIRK, Illinois

JEFF FLAKE, Arizona

TIM SCOTT, South Carolina

BOB CORKER, Tennessee

DEAN HELLER, Nevada

TOM COTTON, Arkansas

DAVID PERDUE, Georgia

THOM TILLIS, North Carolina

BEN SASSE, Nebraska

CLAIRE MCCASKILL, Missouri

BILL NELSON, Florida

ROBERT P. CASEY, JR., Pennsylvania

SHELDON WHITEHOUSE, Rhode Island

KIRSTEN E. GILLIBRAND, New York

RICHARD BLUMENTHAL, Connecticut

JOE DONNELLY, Indiana

ELIZABETH WARREN, Massachusetts

TIM KAINE, Virginia

PRISCILLA HANLEY, Majority Staff Director

DERRON PARKS, Minority Staff Director
(III) 

C O N T E N T S 

Page 

Opening Statement of Senator Susan M. Collins, Chairman .............................. 1 

Opening Statement of Senator Claire McCaskill, Ranking Member ................... 3 

PANEL OF WITNESSES

Barbara ‘‘B.’’ Smith, Former Model, Restaurateur, Retailer, Author, and Actor

(accompanied by Husband, Dan Gasby) ............................................................. 6 

Richard J. Hodes, M.D., Director, National Institute on Aging, National Institutes of Health ...................................................................................................... 9 

Ronald Petersen, M.D., Professor of Neurology; Cora Kanow Professor of

Alzheimer’s Research; Director, Mayo Clinic Alzheimer’s Disease Research

Center; and Director, Mayo Clinic Study of Aging ............................................ 11 

Kimberly Stemley, Caregiver and Chief Financial Officer, RX Outreach ........... 13 

Heidi R. Weirman, M.D., Division Director of Geriatrics, Maine Medical Center, and Medical Director, Elder Care Services, MaineHealth ......................... 15 

APPENDIX 

PREPARED WITNESS STATEMENTS

Barbara ‘‘B.’’ Smith, Former Model, Restaurateur, Retailer, Author, and

Actor, (accompanied by Husband, Dan Gasby) .................................................. 39/40 

Richard J. Hodes, M.D., Director, National Institute on Aging, National Institutes of Health ...................................................................................................... 42 

Ronald Petersen, M.D., Professor of Neurology; Cora Kanow Professor of

Alzheimer’s Research; Director, Mayo Clinic Alzheimer’s Disease Research

Center; and Director, Mayo Clinic Study of Aging ............................................ 53 

Kimberly Stemley, Caregiver and Chief Financial Officer, RX Outreach ........... 58 

Heidi R. Weirman, M.D., Division Director of Geriatrics, Maine Medical Center, and Medical Director, Elder Care Services, MaineHealth ......................... 62 

STATEMENTS FOR THE RECORD

Richard J. Hodes, M.D., Taking a Critical Public Health Priority (slides) ......... 67 

(1) 

THE FIGHT AGAINST ALZHEIMER’S

DISEASE: ARE WE ON TRACK TO

A TREATMENT BY 2025?

WEDNESDAY, MARCH 25, 2015

U.S. SENATE,

SPECIAL COMMITTEE ON AGING, 

Washington, DC.

The Committee met, pursuant to notice, at 2:18 p.m., Room 106,

Dirksen Senate Office Building, Hon. Susan M. Collins, Chairman

of the Committee, presiding.

Present: Senators Collins, Scott, Tillis, McCaskill, Nelson, Casey,

Whitehouse, Blumenthal, Donnelly, Warren, and Kaine.

OPENING STATEMENT OF SENATOR

SUSAN M. COLLINS, CHAIRMAN

The CHAIRMAN. This hearing will come to order.

Good afternoon. It is my pleasure to convene this afternoon’s

hearing to assess our Nation’s progress in combating Alzheimer’s

disease since the enactment of the National Alzheimer’s Project

Act, which I co-authored with then-Senator Evan Bayh in 2011.

I do not need to tell the people in this room what a devastating

disease Alzheimer’s is. It exacts a tremendous personal and economic toll on the individual, the family, and our society.

In addition to the human suffering it causes, Alzheimer’s costs

the United States more than $226 billion a year, including $153

billion in costs to Medicare and Medicaid. These costs will skyrocket as the Baby Boom generation ages. Already our Nation’s

most costly disease, Alzheimer’s is projected to cost more than $1.1

trillion in 2050 if nothing is done to change its current trajectory.

Alzheimer’s is also one of our Nation’s leading causes of death.

The CDC lists Alzheimer’s as the sixth leading cause of death overall and the fifth leading cause of death for those 65 and older.

Other estimates put the mortality rate much higher, at number

three, right behind cancer and heart disease.

Moreover, and most frustrating, Alzheimer’s is the only one of

our Nation’s deadliest diseases without an effective means of prevention, treatment, or cure.

It is now estimated that nearly one in two of the Baby Boomers

reaching age 85 will develop Alzheimer’s. As a consequence,

chances are that the members of my generation will either be

spending our golden years with Alzheimer’s or caring for someone

who has it.
2 

In many ways, Alzheimer’s has become the defining disease of

this generation. If we are to prevent Alzheimer’s from becoming the

defining disease of the next generation, it is imperative that we

dramatically increase our investment in Alzheimer’s research.

Just take a look at this chart. At a time when the United States

is spending an astonishing $226 billion a year to care for people

with Alzheimer’s, we are spending less than 3/10ths of one percent

of that amount, less than $600 million a year, on research.

Believe it or not, that is an increase that many of us have

worked for.

You can barely see the expenditure level on that chart.

Alzheimer’s receives funding that is clearly disproportionately

low compared to its human and economic toll.

Look at the second chart. We currently spend $5.4 billion a year

for cancer research, $3 billion a year for research on HIV/AIDS,

and $2 billion for cardiovascular research—all investments that

have paid dividends.

These investments in research for other diseases have yielded

tremendous results. Patients have access to new treatments. Death

rates for some diseases are decreasing.

Yet, at the same time, mortality due to Alzheimer’s is escalating

dramatically. Surely, we can do more for Alzheimer’s and other diseases of dementia given their tremendous human and economic

price. 

Fortunately, there is promising research that holds hope for Alzheimer’s patients and their families. The research community is

poised to make important advances through clinical trials and investigating new therapeutic targets, but adequate funding is critical to advance this research.

The National Plan to Address Alzheimer’s Disease has as its primary goal to prevent and effectively treat Alzheimer’s disease by

2025. 

To meet that goal, the chairman of the advisory

Committee on Alzheimer’s Research Care and Services, Dr. Ron

Petersen, whom we will hear from shortly, told our Committee last

Congress that we will need to devote at least $2 billion a year to

Alzheimer’s research.

Well, at first blush, that may seem like a lot of money, but when

you compare it to that $226 billion that we are spending caring for

people with Alzheimer’s, it is less than one percent, and that is the

context that we need to put it in.

That is why I have introduced a resolution, with several of my

colleagues, stating that the Senate will strive to double the amount

of funding that our country spends on Alzheimer’s in Fiscal Year

2016 and develop a plan to meet the target of $2 billion over the

next five years.

This afternoon, or perhaps tomorrow—the budget is on the floor

today—I also will be offering an amendment to the budget, which

I am pleased to say is co-sponsored by my ranking member, Senator McCaskill, as well as Senator Warner, Senator Toomey, and

Senator Manchin, and we will also be calling on the budget to reflect that kind of investment.
3 

This is an investment that we simply must make to alleviate suffering and to prevent our health care programs from going bankrupt.

I want to acknowledge all of the advocates who are here today

from all over the country. We need your help. We need you to educate Members of Congress, and we hope that your presence today

will be a powerful statement to all of our colleagues that they, too,

need to help us solve this devastating disease.

Senator McCaskill.

OPENING STATEMENT OF SENATOR

CLAIRE MCCASKILL, RANKING MEMBER

Senator MCCASKILL. Thank you.

I want to thank the chairman for her commitment to this issue.

I think it speaks volumes to the people in this room that the chairman has scheduled this hearing so early in her tenure as the chair

of this Committee. That should be a signal to you that she is committed.

I can assure her and you that I, too, am committed to the issues

that she has eloquently outlined in her opening statement. I think

that with the chairman as an advocate on your behalf we are in

a very good place.

I also want to thank all of you for being here today, from all

across the country. Your spirit is inspiring. You have faced enormous personal challenges, years of frustration, pain, sorrow, moments of hopelessness, and yet, you find the strength to come here

from all over the country and make your voices be heard.

It is democracy at its finest hour as far as I am concerned.

I look forward to hearing the testimony today from a member of

the witness panel that is from the Missouri delegation here in

Washington today, Kim Stemley. I will have an opportunity to introduce her more thoroughly in a few moments, but she is here as

a caregiver, and her experience in navigating the medical, financial, and housing systems I think is probably representative of

many of you in this room.

I look forward to hearing her testimony and seeing what we can

do specifically to help those who are helping care for those with

this serious disease.

At one point, many people believed that Alzheimer’s disease was

a normal part of the aging process and that treatment options were

either hopeless or unnecessary. We now know today that is just flat

wrong. 

If we make the investments now, we can, in fact, make treatment effective, and we can make those treatments available to millions of Americans and, in fact, citizens of the world.

Effective treatments are necessary to alleviate the tremendous

human, economic, and medical that this disease poses on our Nation’s families. We need to do something soon because this is a crisis.

The cost for Alzheimer’s patients is set to reach $1 trillion—over

$1 trillion in just 2050.

Just think about that. A trillion dollars. That is not a sustainable

cost for individuals, families, or our Federal budget.
4 

Family caregivers are the unsung heroes of the Alzheimer’s epidemic. They provide the largest portion of care for individuals with

the disease. Caregivers typically experience more stress, anxiety,

and lost productivity as a result of their increased responsibilities.

While family caregivers provide needed support for their loved

ones for as long as they can, many patients in the later stages of

the disease require round-the-clock care and are moved to nursing

homes. 

According to the CDC, nearly half of all nursing home residences

in the United States have residents with Alzheimer’s disease.

With few long-term care financing options, many families—in

fact, probably most families—depend on the Medicaid program for

their nursing home funds. It is estimated that 28 percent of the

Medicaid budget is spent on long-term care services, much of that

for Alzheimer’s patients.

I know that Ms. Stemley can speak of some of the challenges of

accessing Medicare and help for her mom.

By the way, her mom worked hard all of her life and retired with

a pension, but that was not enough to cover the high cost of nursing home care.

It is important that we are talking about these issues this week

because this is the week we are voting on the budget.

I am worried for our country and for families like Ms. Stemley’s

because the budget we are currently debating does massive cuts to

Medicaid. Nursing home care and other health care services for

seniors and disabled would be slashed by $5.4 billion in Missouri

alone under the budget that we are currently debating. These are

middle-class families that would be devastated by these cuts.

I also want to echo the statements of the chairman about research.

Government investment in medical research has allowed our Nation to be a beacon to the world for hope, for medical advancement,

for being the country that is looked to, and that adds to our national security because we are seen as such a leader in the world

on medical research.

Funding the National Institutes of Health has flattened and suffered over the previous years. I am hopeful that the amendment

that I am co-sponsoring with the chairman will be a moment of bipartisan agreement that we cannot continue to shirk our responsibility in the United States to advancing medical research. There is

no area that is more deserving of additional dollars for medical research than Alzheimer’s.

All that said, those are problems facing families once they have

learned of the diagnosis.

Yesterday, the Alzheimer’s Association released their 2015 Facts

and Figures Report that found that about half of all people with

Alzheimer’s disease that are caregivers are not even aware of their

diagnoses. 

That is incredibly troubling. We cannot go back to the old days

when people were not properly informed of their diagnosis in a misguided attempt to spare them the truth.

Not only are many individuals not being alerted of their diagnoses, but many believe that the mortality rate for Alzheimer’s patients is much higher than projected. A study done by researchers
5 

at Rush University Medical Center found that Alzheimer’s is now

likely the third leading cause of death in the U.S., following closely

behind cancer and heart disease.

We need to tackle this crisis head-on and provide families, such

as yours, with as much support as we can.

I look forward to hearing the testimony from our panel of witnesses about how we can confront the looming challenges and plan

for reaching treatment by 2025.

Thank you again for your leadership, Chairman Collins.

I also want to thank all of you for being here today.

The CHAIRMAN. Thank you very much, Senator McCaskill.

I should correct myself. Senator Moran is also a co-sponsor of the

amendment that we will be offering to the budget. For those of you

from Kansas out there, I just wanted to make sure I corrected the

record. 

Senator BLUMENTHAL. Madam Chair, may I be added as a cosponsor? 

The CHAIRMAN. Absolutely. I would be delighted.

I want to also say that I am so glad that Senator Tillis from

North Carolina, Senator Blumenthal from Connecticut, and Senator Donnelly from Indiana have joined us today. I know they care

deeply about this issue.

We now turn to the testimony of our panel.

I am pleased that joining us today on the witness panel are Barbara, better known as ‘‘B.,’’ Smith and her husband Dan Gasby.

B. is a well-known supermodel who has graced the cover of fashion magazines. She is also an accomplished restaurateur, for those

of us who have eaten at her restaurant at Union Station know

that, a retailer, actor, and author, but nowhere are her grace, beauty, and courage more evident than in her fight against early onset

Alzheimer’s disease.

Dan Gasby is an entrepreneur, television producer, and entertainment executive, and has stood by his wife’s side every step of

the way.

By sharing their story, Ms. Smith and her husband are helping

to make a real difference.

We thank you.

Next, we will hear from Dr. Richard Hodes, who is the director

of the National Institute on Aging at the National Institutes of

Health. Dr. Hodes also represents NIH on the HHS Secretary’s

Federal Advisory Council on Alzheimer’s Disease, Research, Cure,

and Services. He also coordinates the NIH research efforts under

the National Plan to Address Alzheimer’s.

We will then hear from Dr. Ronald Petersen, whom I mentioned

previously. He is the director of the Mayo Clinic Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging. In 2011,

he was appointed to serve as chair of the advisory Committee.

Kimberly Stemley has already been introduced by our ranking

member. She is from St. Louis and will be talking about the challenges that our Nation’s many caregivers of Alzheimer’s patients

face every day.

We welcome you as well.

Finally, it is a great pleasure to welcome to the Committee, Dr.

Heidi Weirman, who is with us here today. For more than ten
6 

years, she has served as a geriatric physician at Maine Medical

Center in Portland, Maine, and she specialized in the challenges

that both physicians and caregivers face when caring for Alzheimer’s patients.

Again, it is truly touching to see the sea of purple gathered in

the hearing room today, but it is also a stark reminder of how

many individuals’ and families’ lives are affected by Alzheimer’s. I

want to thank the advocates who have traveled to Washington.

We look forward to hearing from the testimony, and we will start

with B. Smith.

STATEMENT OF BARBARA ‘‘B.’’ SMITH, FORMER MODEL,

RESTAURATEUR, RETAILER, AUTHOR, AND ACTOR,

(ACCOMPANIED BY HUSBAND, DAN GASBY)

Mr. GASBY. Go ahead.

Ms. SMITH. Okay. Thank you all for having us here today. I have

not been spending a lot of time down here, but I am getting back

on the saddle these days.

It has been a tough time for me because I do have early onset

Alzheimer’s disease, and I am here because I want to make a difference.

I am here because I do not want anybody else to have to go

through this.

I am here to ask you to make a difference not just for the five

million Americans who have Alzheimer’s, and their caregivers, but

for the future generations who will face that.

This has been something that is very new to me because I have

been so healthy for such a long time that I have never had anything like this, but what I am going to do is I am going to fight.

I am going to do exactly what I can to be the best and to be better

than the other person that I really even was.

There are lots and lots of people out there who are probably feeling the way I am feeling, like this should never have happened to

me, that type of feeling. I am sure that there are many people, but

there are many problems out here also.

I feel that I am ready to work. I am ready to do what I have to

do to be the best that I can be and to help as many people that

I can help.

If I have to tell somebody that they should not do something because, I will do it, and they will tell me I want to do it or I do not

want to do it, but it is important to me; it has always been. Health

and wellness has been something that has been a big part of my

life and a part of helping young people.

Today I am excited to be here, I am happy to be here, and I

thank you very much.

I have got a lot to do in my future, and I am going to do it, and

I am going to do it the best way I can.

If I can help people and if they can help me and we can do it

together, even that is fine, but however we do it, we just have to

do it.

The CHAIRMAN. Thank you so much.

Mr. Gasby.
7 

Mr. GASBY. Thank you, Chairman Collins—I want to thank you

for having me—Ranking Member McCaskill, and to the members

of the Committee.

You know, I love my country. I am proud to be an American. I

am a kid from Brooklyn, and I never thought I would have an opportunity to try to make a difference.

This is the one time that I know that I can make a difference

because I have seen what my wife has gone through. I have seen

a woman who virtually could do everything, who could sing, who

could dance, who could look at food and taste it and then cook it

exactly the way it could be in a cookbook, who did a television

show, who did 100 radio and television commercials, who basically

always gave back, and now has to wait and help—wait for people

to help her.

You know, I am reminded of a song that, of all people, Jay-Z and

Kanye West wrote, and there is a lyric in there. It is called ‘‘The

pain ain’t cheap.’’ The pain ain’t cheap for the five million Americans who are suffering with Alzheimer’s disease.

The pain is not cheap for the 15 million caregivers that each and

every day, every waking hour, have to struggle as we do, as a couple. My best friend, watching her get up, try to do things, look me

in the eye and say, ‘‘Honey, I am broken.’’

When you see someone that you know knows that they cannot

do what their body and their mind has told them for 55, 60 years,

you realize that you have got to try to step out, step up, and make

a difference.

I am here to tell you that the pain is not cheap because if we

do not do something now the price we are going to pay 10, 15 years

down the road, by 2050, when it is estimated that 15 million people

will have Alzheimer’s and, as you have so accurately said, the cost

will be over a trillion dollars.

You know, the greatest resource that we have in our country is

our intellectual ability.

The greatest resource that we have in our country is our twoparty system and a democracy that works.

The greatest resource we have is what we learn from generation

to generation that we pass down.

Well, when you have Alzheimer’s, what you have is people who

lose that perspective—people in their 40’s now, 50’s, 60’s and beyond. You lose the ability to give people behind them the sense of

accomplishment, the sense of understanding, and the sense of hope.

You know, we have a modern-day social tsunami. This is what

Alzheimer’s is.

When you look at it, when you look at what my wife has gone

through, when you look at what is ravaging the African-American

community, I am twice as likely to have Alzheimer’s as my Caucasian counterpart.

When you look at the fact that within that community, my community, we are getting tested and treated and found at a later

stage, so the chances of being able to retard or handle the situation

is going to be more costly than ever.

You realize that we have got to stop it right now.
8 

Now we have invested millions of dollars, billions of dollars, as

you said earlier, in heart disease and cancer, but we pay a pittance

to Alzheimer’s disease.

We know that by using a PET scan we can determine that there

is amyloid-beta plaque in the brain, and if we find out that that

has happened, we can begin the process of taking care of ourselves

through diet, through exercise through holistic practices, and

through that we may be able to ward off or slow down so that we

can allow what government funding and the intellectual capacity

that we have in this country to develop the means and the methods

to make a difference.

I am here today because I believe in America. You know, 30

years ago, if you walked around with a telephone, you had it on

your back, and today, when you walk around, it is in your hand.

I know that we can take the gene code and break it down. It

used to take forever to even figure out we had genes, and now we

understand the differences in different population groups.

I know that drug trials make a difference in different populations. That will help the efficacy of drug testing and treatment

and bringing positive, powerful new medicines to market.

I know that we have, within the breadth and depth of this great

country, the people who are committed.

Last night, I was at the Alzheimer’s dinner, and I saw 1,000 people-plus who all know that the pain from Alzheimer’s is not cheap.

What I saw there last night was a team. I saw a group of people

from the deep South to the far West, from the heartland of America

to New England, all looking each other in the eyes and saying, you

know what? We are at the tipping point, and we are going to push

this thing over.

I come here today to tell you I do not believe in big government.

I believe in good government, and I know that what is happening

in this Committee is going to change the face of the Alzheimer’s

community. 

Last night, I sat a table with 10 other people, and there was a

young boy there. His name was Tyler.

While we were talking about all the things that were going on

and we were listening to Lisa Genovo, who wrote the book for ‘‘Still

Alice,’’ I was looking at him.

The only thing I could think of was, you know, here is a 12 or

13-year-old that if I said to him right now, what is a cassette deck,

he would go, huh?

If I said to him, what is an 8-track, he would go, what?

Well, I want that young man, that young boy, Tyler, when his

kids are his age, he can look back and say, I remember when we

conquered Alzheimer’s, and the kids are going to say, what? Huh?

We have it within our capacity here in this country to make that

difference, and I want to be a part of it, not just for her but for

the future Tylers in this country.

Thank you.

The CHAIRMAN. Thank you both for such eloquent testimony.

Thank you so much.

Dr. Hodes.
9 

STATEMENT OF RICHARD J. HODES, M.D.,

DIRECTOR, NATIONAL INSTITUTE ON AGING,

NATIONAL INSTITUTES OF HEALTH

Dr. HODES. Thank you, Chairman Collins and Ranking Member

McCaskill, and members of the Committee. Let me begin by thanking you for the opportunity to be here and for the support that you,

Congress, and the administration have provided to NIH and for the

research, and to thank everyone here in this room for the opportunity to be a part of what we are doing.

I would like to spend the next few minutes just giving some of

the examples of the State of research in Alzheimer’s disease, the

State which gives us great hope, hope greater than ever before,

that the progress we are seeing now will lead to improvements in,

ultimately, the ability to treat, cure, and prevent Alzheimer’s disease.

If we can move to the next slide.

This probably needs no elaboration, as referred to by Chairman

Collins, but is an illustration of where we stand now in terms of

the number of people affected with Alzheimer’s disease, some 5.1,

5.2 million, and the projection for its increase two to three fold in

the next decades if we do not change that course, and to the right,

in the bars illustrated, are the estimates of cost already showing

Alzheimer’s disease to be the most expensive disease and condition

we face in this country, with projects of it again increasing severalfold as the population at risk increases.

There is reason to think, to hope, and there is an imperative that

we succeed in changing this trajectory.

In the next slide, some examples of what were alluded to. Dan

Gasby referred to imaging as an indication of the ways in which

we gain insight into what is going on with Alzheimer’s disease, not

possible just a few years ago.

These are scans that look at amyloid a-beta and tau, two of the

lesions that correspond to the plaques and tangles that Professor

Alzheimer saw in 1906, that until recently were identifiable really

only at autopsy, and this illustrates our ability now to image these,

and you see the slides shown here—cognitively normal individuals

with relatively little of these deposits.

The next slide shows some contrast—an individual with Alzheimer’s, affected with dementia and cognitive change, and you can

see by the color codes and intensity the increase in both plaques

and tangles that are formed in those brains.

The situation is even more complex and challenging than that.

If we look at the next slide, here is another individual, cognitively

normal, who actually has accumulations of amyloid and tau in the

brain. 

We are gaining insights only now into our ability to recognize

these as potentially very early stages of disease, before symptoms,

potentially before there is irreversible damage done, a stage at

which we can begin to intervene and attempt to prevent progression and appearance of symptoms, so remember this and then turn

to the next slide, which is another illustration of progress made.

I apologize for the difficulty in reading it, but it is a time course

of genetic discoveries, and it shows in the early 1990’s we discovered those genes that were responsible for very rare, but tragic, fa-
10 

milial forms of Alzheimer’s disease, and then there was a period of

about fifteen years when we did not discover any other new genes

until the modern technologies of sequencing and GWAS gave us a

proliferation of the genes that we understand, but remember those

genes that cause Alzheimer’s in families and then turn to the next

slide. 

We are able to identify in these rare and tragic families, such as

the one illustrated in this study, a family in the South American

country of Colombia, by imaging, identifying individuals years and

decades before we know they are going to have the disease changes

which occur in the brain, so on the bottom left is the relatively normal scan of individuals in their 20’s, whether they have this Alzheimer’s-causing gene or not.

To the right, the individuals who did not inherit the gene from

their parents look relatively normal in the brain whereas, to the

bottom right, those individuals who are gene carriers are already

showing signs of the disease decades before symptoms.

It is exactly in these individuals that we are now beginning to

do studies, prevention studies, by intervening with treatments before damage and loss of cognitive functions occur, with a new generation of hope that we can make a difference with this kind of

treatment. 

The next slide.

Just to emphasize that these studies are being done in great and

novel partnerships with the public and private sector, and investing to the common goals of identifying new targets for Alzheimer’s

disease, and then studies to attempt treatments and conditions

where we can monitor the changes in biomarkers and tell earlier

in the course of these studies whether there is success or not success in these interventions.

The next slide.

Then to turn to another important aspect, even as we search for

cures and early insights into the molecular diagnoses, we recognize

the importance of doing all that we can to take care of individuals

who are now living with disease and those who care for them.

This is an example of a caregiver study, REACH, a study designed to look at interventions that would make life better for people with Alzheimer’s disease and those who care for them.

The study, as any other clinical trial, was judged by its success.

It was enormously successful and was able to allow people to live

at home longer, protect the health and prevent against the increased risk of disease in caregivers that is so common, and is now

being disseminated as illustrated here, through the VA and

through the Administration on Aging nationwide, in an effort to decrease the burden for those who take on the most important job of

caring for those living with Alzheimer’s disease.

The next slide.

Finally, just one to illustrate that under the aegis of the National

Plan, which has provided a new and intensified focus for disease,

we have a spectrum of commitment illustrated here, the goal of

curing and preventing Alzheimer’s disease by 2025, along with

equally important goals having to do with care, enhancing public

awareness, and tracking progress through time.
11 

I thank you for an opportunity to give you this brief summary

of some of the reasons for real excitement and optimism and look

forward to addressing any questions you may have.

Thank you.

The CHAIRMAN. Thank you very much.

Dr. Petersen, welcome back.

STATEMENT OF RONALD PETERSEN, M.D., PROFESSOR OF

NEUROLOGY; CORA KANOW PROFESSOR OF ALZHEIMER’S

RESEARCH; DIRECTOR, MAYO CLINIC ALZHEIMER’S

DISEASE RESEARCH CENTER; AND DIRECTOR,

MAYO CLINIC STUDY OF AGING

Dr. PETERSEN. Thank you, Chairman.

Good afternoon, Chairman Collins, Ranking Member McCaskill,

and distinguished members of the Senate Special

Committee on Aging.

I would like to thank the Committee for the opportunity to discuss the importance of Alzheimer’s disease for this country and,

also, commend Senators Collins and Klobuchar for introducing the

resolution to double the funding for Alzheimer’s disease research in

2016 and to achieve the goal of increasing the annual research

budget to $2 billion in five years.

As you know, in 2010 Congress unanimously passed and the

President signed into law in 2011, the National Alzheimer’s Project

Act requiring the Secretary of Health and Human Services to generate the first plan for this country to address Alzheimer’s disease.

The advisory council has just completed its recommendations for

the 2015 plan in January.

The primary goal of the plan, as Dr. Hodes has just mentioned,

is to effectively treat and prevent Alzheimer’s disease by 2025. This

goal is but a short 10 years away.

An essential feature of the recommendation submitted to the Secretary and to Congress includes the recommendation that the Federal Government spend at least $2 billion a year in research on

Alzheimer’s disease.

As Chairman Collins has indicated, this figure pales in comparison to what we spend on cancer, HIV/AIDS, and cardiovascular disease, and yet, in those diseases there has been significant progress

made with regard to reducing the number of deaths per year.

Yet, the annual death rate for Alzheimer’s disease is escalating.

Again, Alzheimer’s disease is an incurable disorder with no survivors.

In 2013, the United Kingdom Prime Minister, David Cameron,

used the final event of the G–8 presidency to host a summit on dementia. In preparation for that meeting, Professor Nick Fox of University College-London, and I wrote a commentary for the journal,

‘‘The Lancet,’’ suggesting that member countries consider spending

one percent of their annual care budget on research.

In 2014, the United States spent $226 billion caring for people

with Alzheimer’s disease, and if we were to spend one percent of

that figure on research, we would reach the $2 billion figure recommended by the advisory council and Senator Collins.

Last week in Geneva, Switzerland, the World Health Organization sponsored the first Ministerial Conference on Global Action

Against Dementia. At the meeting, I presented some figures simi-
12 

lar to what Dr. Hodes has just shown as to what the current numbers of individuals with Alzheimer’s disease are in this country and

what they are projected to be by 2050.

Then we superimposed the scenario of: What if we delayed the

onset of the disease by 5 years? How would those numbers be impacted?

Another scenario would be: What if we were able to slow the progression of the disease? We might have the same number of individuals but more people with a lesser degree of impairment.

Or, preferably, doing both of those.

In a recent report from the Alzheimer’s Association, it is projected that if a treatment were to be introduced by 2025 that would

delay the onset of Alzheimer’s disease by five years, that treatment

would reduce the number of individuals affected by the disease by

5.7 million by 2050 and save all the payers, including Medicare,

Medicaid, and families, more than $220 billion within the first five

years. 

As recommended by the advisory council, if the government were

to invest $2 billion per year, the country would recoup this investment within the first three years after a treatment became available.

All of the economic models converge on this point. They indicate

that the savings to the Federal Government would more than capture the increased investment in research in a relatively short period of time with an effective therapy.

I would like to commend my colleagues at the Department of

Health and Human Services for their work toward enacting the

National Alzheimer’s Plan thus far. Great strides have been accomplished in coordinating Federal agencies and improving Federal capabilities with respect to Alzheimer’s disease. However, a great

deal of work needs to be accomplished since we are not close to our

goal of effectively treating and preventing the disease by 2025.

I can say with confidence that the research community is poised

to make a significant contribution toward the goal if adequate

funding were available. As outlined by Dr. Hodes of the National

Institute on Aging, he and his staff have established milestones for

the execution of the plan and now, with the passage of the Alzheimer’s Accountability Act, are working diligently to prepare a

professional judgment budget to submit to Congress, outlining expenditures necessary to accomplish the goals set forth in the National Plan.

We cannot wait until there is a more convenient time to increase

funding for this disease. Projections indicate that Alzheimer’s disease will bankrupt the health care system as we know it today. We

simply cannot afford to spend the aforementioned over $1 trillion

a year, as is projected in 2050, to care for individuals with Alzheimer’s disease.

The impact on individuals and families is enormous. The cost to

society is unsustainable.

We appreciate the difficult constraints under which the Federal

Government is currently operating, but our patience and families

cannot wait. With 10,000 Baby Boomers turning 65 on a daily

basis, this problem is not going to be resolved by itself.
13 

We are all poised to make a difference given the opportunity, and

considering there was a recent report of a new and promising drug

made at an international meeting last week in Nice, France, we are

encouraged that something is in the pipeline.

Ultimately, it will be up to the individuals such as those on this

Committee to make very difficult decisions regarding funding for

Alzheimer’s disease and related disorders going forward.

We call upon Congress to make bold decisions to alter the course

of this disease now so that it is not a burden to the next generation

and providing them with an intractable situation. The National

Plan to Address Alzheimer’s Disease has established a blueprint

that would make this possible, and we need your support.

I appreciate the opportunity to address the Committee. Thank

you. 

The CHAIRMAN. Thank you, Doctor.

Ms. Stemley.

STATEMENT OF KIMBERLY STEMLEY, CAREGIVER

AND CHIEF FINANCIAL OFFICER, RX OUTREACH

Ms. STEMLEY. Good afternoon, Chairman Collins, Ranking Member McCaskill, and members of the Committee.

On behalf of the 15.7 million caregivers for individuals living

with Alzheimer’s disease and other dementias, thank you for the

opportunity to testify before you today.

Alzheimer’s is a devastating, progressive and, ultimately, fatal

disease. More than five million Americans are currently living with

Alzheimer’s disease or another dementia.

The men and women living with Alzheimer’s are your friends,

your neighbors. Some may even be your family members. They are

business leaders, school teachers, store clerks, and construction

workers. They are both Republican and Democrat, and my beloved

mother, Dorothy Stemley, is one of them.

I am honored here today to share our story and discuss issues

facing people with Alzheimer’s and their caregivers. I find the more

vocal I am about how this disease has impacted my family the

more I hear from other people who have gone through, or are going

through, similar situations.

Today, my mother is living in a skilled nursing facility in Missouri, and I am confident that she is receiving appropriate care and

she is in the right setting. However, getting to this point was a

challenge, and there are many families out there who never get the

care and support they desperately need to face this terrible disease.

For several years, my mother and I were in denial about the

changes in her behavior. I did a great job rationalizing unusual incidents, and she did an even better job hiding others.

All the rationalizing and denial came to an abrupt halt the morning I received a call from a stranger telling me my mother was in

the middle of Martin Luther King, Jr. Drive in St. Louis. Alone and

confused, she had slept all night in her car on the side of the

street. My mother was a long way from home, and that day marked

the beginning of our journey with Alzheimer’s.

My mother’s diagnosis was the result of three different evaluations. Neurologists performed a number of blood and cognitive tests
14 

on her, ultimately concluding that it was, in fact, Alzheimer’s disease.

There I was, an only child, caring for my single mother who had

Alzheimer’s. I knew then that the world we had shared was no

longer, and at the age of thirty I was thrown into a world that was

completely foreign to me, a world of Alzheimer’s disease, and I felt

completely lost.

After her diagnosis, we did not receive much information from

her doctors about the disease or much advice on what to do next.

A friend of mine recommended looking online for help.

I found the Alzheimer’s Association, which was the first time

light began to shine through the darkness. I was able to learn

about the disease, what the diagnosis meant for both myself and

my mother, as well as what our next steps should be in considering

options for her care.

I also learned how to cope with all the emotions I was feeling

throughout the whole process. This is important because the stress

of being a caregiver was only compounded by the stress that I faced

at work.

My physical health started to suffer. I would wake up in the middle of the night with back spasms, and my back pain was so severe

that my own doctor recommended I make a lifestyle change just to

maintain my own health. I did, and now I exercise three times a

week, and I have been eating a healthier diet.

However, the emotional part of it continues to be very difficult

for me, and when I see my mother now it feels like day one every

single time.

At the time she was diagnosed, my mother was living alone. She

had exhibited other warning signs that raised concerns about her

safety. For example, my mother started a fire in her condo one day,

and although no one was hurt I knew then it was time to consider

other living arrangements for her.

We moved her into a senior’s independent living apartment

which provided her with the security, hospitality, and social outlet

that she needed. She was able to live there on her own for another

four years until her memory loss had progressed to the point where

additional care and attention were needed.

The next step was my own personal nightmare coming true, moving my mother to the skilled nursing facility where she currently

lives today.

Although my mother worked for thirty years and retired with a

healthy pension, the high cost of long-term exhausted her funds.

We needed the Medicaid program to afford the long-term care, and

I am very grateful for the assistance.

Based on my experience, I know I am not the only one who has

had difficulty getting help after learning about an Alzheimer’s diagnosis. I have experienced firsthand the gaps in our health care system when it comes to dealing with this disease.

Far too many physicians are not familiar with how to properly

advise patients and their caregivers after an Alzheimer’s diagnosis.

It took a friend’s advice, not my mother’s health care provider, and

finding the Alzheimer’s Association for us to even get basic information about what to expect next.
15 

No one could ever feel as lost, or no one should ever feel as lost,

as I felt back then.

There is no treatment for Alzheimer’s disease. However, there

are many things that can be done to improve a family’s ability to

cope with the disease, especially immediately following a diagnosis.

This is why the HOPE for Alzheimer’s Act, which was reintroduced this week, is critically needed. The HOPE Act would ensure

that families like mine, who are facing an Alzheimer’s diagnosis

are provided with care planning services to help guide them

through their next steps.

To some extent, I feel blessed. I eventually found the resources

and the support I needed to manage my mother’s condition and my

own well-being.

If HOPE had been around at the time of my mother’s diagnosis,

I am certain that I would have felt much less alone in this fight

in the beginning.

Until a cure is found, we must work to support the family, the

caregivers, and people with the disease immediately following the

diagnosis. We need care; we need help, which is exactly what the

HOPE for Alzheimer’s Act would provide.

I have also had the opportunity to speak with many researchers

about the current progress that has been made toward the development of a cure for Alzheimer’s. I am disheartened because I realize

that despite progress we still have a very long road to walk.

Seeing advancements in other areas as the result of strong Federal investments and research makes me think of the opportunity

that exists for scientists to develop a truly groundbreaking treatment for this disease, one that could spare millions of families the

same heartache I feel every time I see my mother.

I always say that Alzheimer’s disease is one of the worst out

there. 

I implore you and all of your congressional colleagues to work to

provide additional funding for Alzheimer’s research. Research is

the only way we can truly create a world without Alzheimer’s.

I thank you for the opportunity to testify today. I appreciate the

support of the Committee and its focus on improving the lives of

those affected by Alzheimer’s disease.

If there is one thing I would ask that you would take away from

my testimony, it would be that Alzheimer’s disease not only impacts the diagnosed person but those that love them very dearly.

Thank you so much.

The CHAIRMAN. Thank you very much for giving us your perspective.

Dr. Weirman.

STATEMENT OF HEIDI R. WEIRMAN, M.D., DIVISION

DIRECTOR OF GERIATRICS, MAINE MEDICAL

CENTER, AND MEDICAL DIRECTOR, ELDER

CARE SERVICES, MAINEHEALTH

Dr. WEIRMAN. Good afternoon, Chairman Collins, Ranking Member McCaskill, and the distinguished members of the

Senate Special Committee on Aging. I am very appreciative of

this opportunity to be here with you for me to share my experiences treating individuals with dementia and working with their

caregivers. 
16 

I am a geriatrician in Maine with roots in Oregon, and clinically,

my work is focused on dementia. I evaluate individuals and work

with their families at our outpatient geriatric center. I also spend

time in the hospital, working with programs to prevent complications for older adults who are hospitalized.

As the medical director for the hospital Elder Life Program, I

work to prevent delirium, which is particularly devastating for individuals who have dementia and experience that. It changes the

trajectory of their dementia in a very negative fashion.

Dementia really is a looming crisis for our State and the Nation.

Maine has the oldest median age, nearly six years older than the

average median age in the United States, which means we have

fewer working-age individuals to help care for our older adults and

particularly those with dementia as their disease progresses.

Projections for Maine are that the 65 and older population is the

only population that is going to grow in the next 10 years. Our

total population will remain flat at about 1.3 million.

We currently have about 37,000 individuals diagnosed with dementia, and it is projected to increase by nearly 50 percent to about

53,000 in five years.

Dementia is an epidemic, and it will have dire consequences on

our economy, our health system, and our family structures if we do

not act now to do something. Dementia stresses our State in many

ways, including increased burden placed on caregivers, both paid

and unpaid, a lack of safe housing, needs for transportation in our

rural State, and a health care system that is already overburdened.

In Maine, about two-thirds of patients with dementia die in nursing homes. We have fewer younger people, which means fewer formal and informal caregivers to help.

Within our health system at MaineHealth, we are experiencing

significant challenges already finding suitable living environments

for hospitalized patients with dementia when they can no longer be

cared for at home. This results in patients remaining at the wrong

level of care in an acute care hospital when what they need is an

environment designed to care for them with their chronic and progressive dementia.

This puts a lot of stress on families, on the patients themselves,

as well as the medical community providing the care. It creates a

tremendous financial burden.

Diagnosis and treatment of patients with dementia is not a routine part of clinical training for most providers and staff in many

care settings. It is really critical that our primary care system become prepared to deal with cognitive assessment and care planning

to provide those resources that individuals and their families need

to deal with this progressive disease. Currently, dementia is a

chronic terminal illness, and we need to prepare our health care

system and communities to provide planning and support to patients once they are diagnosed even as we search for that cure.

I would like to take a moment to share a couple of stories. I have

utilized pseudonyms for these stories.

I first met Mr. and Mrs. Keller about ten years ago when I diagnosed Mr. Keller with mild cognitive impairment. Sadly, his disease progressed to Alzheimer’s dementia, and over the next several

years he had a gradual decline and developed issues with walking
17 

and swallowing. Eventually, he began having more issues with eating and started to develop frequent pneumonias.

I began visiting him in his home as it was nearly impossible for

him to make it into the office. He had support from his wife, from

paid caregivers and, intermittently, from other family. Eventually,

we involved hospice, and he was able to die in his own apartment,

as was his wish, with the support of his wife and family.

During that time period, I got to know his wife well. She was a

very active woman involved in her senior community. She suffered

significant anxiety as her husband’s disease progressed and required treatment of her own.

After her husband passed away, I did not see her for a year, and

then one day she appeared in my schedule as a new patient. She

had developed memory loss.

She no longer had a spouse who could help care for her. Her children lived away. They were around in the summer and really could

not provide support.

Mrs. Keller continued to live fairly independently with paid caregiver support and eventually needed to transfer to an assisting living level of environment. Her transition did not go well. She fell.

She had a head injury. She developed delirium, and she has continued to decline today.

She and her husband had tried to plan financially for all their

needs, but their private caregivers are expensive and the money

ran out. She now resides in a nursing home.

Her children felt very guilty that they were not able to provide

the same support for their mother that allowed their father to die

at home, but the resources are simply not there.

We need more flexibility in funding for caregiver support and alternative options for housing to care for individuals with dementia,

and I believe in this case we could have had a better outcome.

I have other cases and scenarios that I can share, but I see I am

running out of time, so I would like to thank you for taking the

time to hear my story.

I implore you to continue to support increased funding for the

support of caregivers and individuals with dementia now, to support alternative housing options and creative community supports

for individuals with dementia. Ultimately, of the utmost importance is increase in funding to identify ways for prevention and

cure of this devastating disease.

Thank you.

The CHAIRMAN. Thank you very much for your moving testimony.

Ms. Smith and Mr. Gasby, when we were talking informally before the hearing, you talked about a public service announcement

that you had made.

Could you share with everyone here what you did to try to expand awareness and participation in clinical trials?

Mr. GASBY. Yes, Senator. Excuse me.

We are affiliated with the Brain Health Registry, and what the

Brain Health Registry does is it goes to get people to participate

in giving information so that they can be considered for drug trials.

One of the main impediments to getting more funding, more research, more drugs online, is that we do not have enough people

to participate so that they can be considered for these drug trials,
18 

and particularly in minority communities. There has been a—with

the Tuskegee experiment, with things that have happened in the

past, myths and some realities, African-Americans and people who

are not Caucasian are not participating.

What most people do not realize is that to bring a drug to market

costs billions of dollars and you need to have a genetic pool, a diverse pool, and so you need different people from different backgrounds. You need women. You need men. You need, you know,

Asians. You need Latinos. You need African-Americans.

This Brain Health Registry registers folks so that they can be

considered for these drug trials.

What we wanted to do is we wanted to break down that stigma,

that it is okay, that, you know, government does do good things,

and that going through trials is not going to be the Tuskegee experiment all over again.

There are so many myths and so many taboos that have been existing out there, and we wanted to make sure—by being involved,

we wanted to let people know we have to do this, not for just ourselves but for the future, to find the right medicines.

The CHAIRMAN. Thank you.

I want to thank you for doing that PSA, also. I have had the opportunity to see it.

Mr. GASBY. Well, one of the great things about that PSA that we

did was that it increased the overall participation by, you know, six

percent within the minority community, but also, overall more people signed up because they were not aware that they needed this

diversity in the gene pool.

The CHAIRMAN. That is really terrific, particularly since AfricanAmericans are more likely, as you pointed out in your testimony,

to get Alzheimer’s.

I think your being out there has really helped to increase awareness, and I thank you both for that.

Mr. GASBY. Thank you, Senator.

The CHAIRMAN. Dr. Hodes, I have started visiting research centers, and I have talked to Dr. Petersen at length about the wonderful work at Mayo, and just two weeks ago I spent an hour and a

half at Massachusetts General Hospital talking to the Alzheimer’s

researchers there, and I must say, and I want to share with this

audience, that I see great promise and great hope on the horizon.

One of your charts talked about the imaging that is now possible

which was not just a few years ago. Alzheimer’s could only be diagnosed definitively through a brain autopsy. Now we can do imaging

that shows the beta-amyloid plaques and the tangles and tau.

I learned at Mass General that there is actually an antibody that

can be given when the beta-amyloid is developed. I do not know

how effective or what stage that is at.

There was so much exciting research going on just at Mayo and

Mass General. I cannot wait to go to the University of Pennsylvania and to other research centers. I am sure there is one in Missouri as well.

The problem is with only $600 million you cannot possibly fund

all those exciting research applications.

Can you give us some idea of what percentage you are able to

fund of the promising projects that are out there?
19 

Dr. HODES. Well, thank you for the question.

It is very much the case that in the wealth of excitement and opportunities, gifted and committed scientists are proposing research

that is far in excess of our ability to fund it now.

The answer to your question in terms of percent can be answered

in a very real, but in a sense superficial, way just by looking at the

success rate we have or the pay line for applications, so that, of the

applications that come in, in the area of Alzheimer’s research, we

are able to fund now in the range of eleven or twelve percent.

It is easily said that twice that number, or more, are considered

by peer review experts in the field as absolutely outstanding and

meritorious of support, so that, at even that level, in terms of the

research that we already have proposed, there is great room for

more that could and should be funded if there were adequate resources.

Beyond that, with sufficient resources, the ability to recruit and

initiate new areas that are not even in the minds yet of investigators is a dividend that we very much look forward to.

The CHAIRMAN. Of course, if researchers saw a bigger pot of

money available, that too would produce more submissions, but

eleven to twelve percent, when at least double that number are

worthy of funding, I think is another strong argument.

Senator McCaskill.

Senator MCCASKILL. Thank you.

I want to thank all of you.

Let me ask; it is true this disease also disproportionately affects

women, correct?

Mr. GASBY. Yes.

Senator MCCASKILL. More women than men and more AfricanAmericans than Caucasians?

Mr. GASBY. Yes.

Senator MCCASKILL. Let’s talk a little bit about the reality of

Medicaid in this equation.

We have two issues really we are talking about here. One is investing in the research. The other is making sure that care can be

given. 

Ms. Stemley, we live in a State where they have refused to expand Medicaid, refused to draw down the Federal dollars that are

available for health care in our State, and the budget that we are

currently debating cuts Medicaid by another $400 billion in this

country. 

I am not sure that most people realize the percentage of nursing

home patients that are (a) suffering from Alzheimer’s and that are

(b) needing help from Medicaid.

What would you have done—I mean, I think there are stereotypes around Medicaid that are terribly unfair to women like your

mother. Your mother worked thirty years. She had a pension. She

had a plan, and then she got Alzheimer’s, and you found yourself

having to access Medicaid services for her long-term care.

What would you have done if those Medicaid services were not

available? 

If there had been a block grant in Missouri, like the House has

done in their budget, and the money was gone because it was October, what would you have had to do?
20 

Ms. STEMLEY. Senator McCaskill, I do not know.

That thought—first of all, I was not familiar with the Medicaid

process until we were thrown into this world, and so there have

been many nights through this process when understanding the

costs of long-term care and the realities of what we were facing because you are now facing the financial fight because now you have

an extraordinary price tag to this disease, and then you have the

emotional, the physical, and then you have that fight to go

through. 

Initially, just understanding the costs, that we were about to go

down this path, there were many nights that I was very scared because I know she does have a good pension, but she does not have

the pension, and we do not have the resources to pay $5,000-plus,

$8,000, $10,000 in certain cases a month to have a long-term care

facility. 

I did not know what we would do if we were going to be denied.

I did not know if she made too much, if she had—you know, all of

these fears come into your mind: Do I make too much? Do I make

too little? Am I going to be denied?

It was not an option for us to be denied. I had to have the care.

One of the very disheartening parts for this for me—and you

pointed it out—is my mother is a very proud woman, and she did

work for thirty three years, and she worked for the Federal Government for thirty three years, and she is very proud of it.

Even today, her mind sometimes thinks she still has to go to

work for the government, and so, you know, we play and do those

sorts of things, but to know that all of those years of work are exhausted by a disease and not transported forward through an inheritance, or her grandchildren do not get to see it, and there are

not things that she is leaving behind for her family, but this disease is exhausting everything is heartbreaking.

I do not know what we would do, but that alone has been my

fear many a nights, and that is why I said I thank God for Medicaid, and at the same time, we have never needed for anything.

You know, we are, I guess, a middle-class family, and so I have

never been in a position to have a need, and that was humbling,

to be honest, but I sure was and am grateful for it because where

would we be.

Senator MCCASKILL. Well, I sure hope that you and all of the advocates in the room carry that message because I think there is—

the stereotype is harming the Medicaid program. I think there are

people that are comfortable assuming that the only people who

need Medicaid are people who have not worked hard or people how

are not trying.

Ms. STEMLEY. No.

Senator MCCASKILL. Nothing could be further from the truth,

particularly when it relates to long-term care in this country.

It seems to me that not funding research is dumb because it is

going to cost us a lot of money and refusing to fund care is cruel,

and so I hope that you all will continue to advocate in every office

in the Capital on those two issues.

Thank you, Madam Chairman.

The CHAIRMAN. Senator Warren.

Senator WARREN. Thank you, Madam Chair.
21 

I apologize for my delay in getting here. I was also trying to

cover a Banking hearing, so—but I wanted to be here.

Alzheimer’s forces families to watch helplessly as their loved

ones slip away. The high cost of care also frequently stretches families to the breaking point, as you have just testified.

According to the Alzheimer’s Association, we will spend $226 billion caring for people with Alzheimer’s this year, and by the year

2050 the yearly cost will be more than $1.1 trillion.

Now when the director of the National Institute of Mental

Health testified in front of the HELP Committee during the last

Congress, he noted that if we can prevent, or even delay, the onset

of dementia we could save billions of dollars. He also said that this

is really a matter of choosing to invest in research now or choosing

to pay up in a big way later on.

Clearly, Congress is choosing to pay up in a big way later on.

Congress has reduced the purchasing power of the NIH by nearly

twenty-five percent, and last year NIH spent only $562 million on

Alzheimer’s disease research. That is about 2/10ths of one percent

of what the disease cost us last year.

Dr. Hodes, can you tell us very briefly how the reduction in support for NIH funding affected the ability of you and your colleagues

to advance research on Alzheimer’s?

Dr. HODES. Thank you, Senator Warren, for the question.

It certainly is the case that the progress in Alzheimer’s research

is not being limited by great ideas or scientists capable of carrying

out the research but our ability to support it.

As in an earlier comment I noted, even if one looks at the number of outstanding applications that are currently being proposed

by scientists and the proportion of those that we can fund, it is a

conservative estimate that we could fund twice as much as we do

now simply of the outstanding meritorious ideas being proposed

and being moved forward at a greater speed.

That is only really the first iteration because, undoubtedly, with

more resources we would be able to recruit new investigators, establish new infrastructure for more innovative approaches, so that

is a first-order response to your question.

Senator WARREN. That is right, so what you are really saying is

we are funding half or fewer of the potential research avenues that

might give us a cure for Alzheimer’s.

Dr. HODES. Of the outstanding proposals that are currently being

submitted to us, yes.

Senator WARREN. Thank you.

Dr. Petersen, could you just add to that, please?

Dr. PETERSEN. Well, I think another ramification of that, Senator

Warren, is the fact that with the reduction in Federal funding

there is also a reduction of the number of new investigators going

into the field, and that is going to cripple us down the road, so if

the young investigators see the old guys like myself struggling for

funding in a research setting, they are saying, how am I going to

survive? 

I am afraid that we are turning off a young generation of investigators that are going to be the ones who are going to lead us forth

in the future. I see that as a real, real concern.
22 

Senator WARREN. High cost right now by not funding Alzheimer’s

research, high cost long-term.

Every single Member of Congress I have spoken with says that

they support NIH and they support more medical research, but

medical research takes money, and Congress has done absolutely

nothing to actually get more money into the Agency.

The House Republican budget and the Senate Republican budget

were released last week, and both say that they support medical

research funding, but what the Republican budgets actually do is

lower the budget caps that are already crushing our research agencies, making it likely that the agencies like the NIH would see

cuts, not increases, under these plans.

Now earlier this year, I introduced the Medical Innovation Act,

a bill that would boost NIH funding by about $6 billion a year.

That is not enough, but it is a start, and we can do it without raising taxes, without gutting critical programs, without gutting vital

research, and without adding a dime to the deficit.

I hope that my colleagues who are serious about funding the NIH

will join me in this effort or bring other ideas to the table because

talk is cheap.

We have an opportunity to make a real difference in the fight

against Alzheimer’s, an opportunity to save billions of dollars in

unnecessary health and long-term care spending, and to give families their loved ones for more precious time. We are going to miss

that opportunity unless Congress steps up and funds the NIH.

Thank you, Madam Chairman.

The CHAIRMAN. Senator Scott.

Senator SCOTT. Thank you.

The CHAIRMAN. Senator Scott, welcome.

Senator SCOTT. Thank you, Chairwoman Collins. Thank you for

holding this hearing and giving us all an opportunity to really

interface with so many people that are committed to the cause, and

for all those folks out there with the purple on today, thank you

for your investment of your time and your energy on such an incredibly important topic. I know that all of our offices have been

filled with your enthusiasm and your real-life stories.

I cannot think of anyone here on this panel who has not been impacted personally by Alzheimer’s, and for me at least, Alzheimer’s

and Parkinson’s, and watching the challenges of your loved ones.

My grandmother passed away April 29, 2001, and just seeing the

devastation and the challenges that she faced.

Also, for those who have been support systems, if you have had

to—if you have been blessed with the opportunity to care for someone with Alzheimer’s, would you raise your hands?

[Show of hands.]

God bless you and thank you.

It is amazing the impact that the disease has not only on the patient but on the family and on the loved ones.

It is such a powerful witness that the folks that stopped by my

office today spent a lot of time talking about their loved ones, their

commitment to making sure that the research and the resources

are available for the others who may be impacted by the disease

as well.
23 

I thank you for your energy and your enthusiasm. It keeps all

of us focused on the topic.

My question is for Dr. Hodes.

Thank you for your expertise and thank you for your contribution

here today.

It is a great opportunity for me to really spend some time talking

about the success that we have had at home in South Carolina, the

Medical University of South Carolina and so many folks at the

Roper St. Francis Hospital system that has invested a lot of time

looking for the resources to make progress.

Roper St. Francis, in particular, in Charleston has received more

than $20 million in grants researching treatments and caring for

hundreds of Alzheimer’s patients each and every month.

Since 2006, the South Carolina Aging Research Network has also

been doing some really great work on this issue in conjunction with

other hospitals and research universities.

There is still so much work to be done. I hear optimism, though,

from researchers in our State, who believe that with the right resources they can do the most amazing things.

The question I have for you, Doctor, is what does progress look

like over the next ten years from your perspective?

Are we meeting the National Alzheimer’s Project Act milestones

and updating them appropriately so that our researchers are working on the most critical projects?

Can you point to specific achievements in collaboration and discovery since NAPA that has advanced the science on this issue?

Dr. HODES. Thank you for the comment, Senator Scott.

I think there is well-justified and huge enthusiasm about the potential for progress as we have a convergence on more and more

insight into basic molecular and cellular mechanisms behind Alzheimer’s disease.

In terms of the planning that is now in place as an intensified

product of the National Plan, we, on a regular basis—most recently

with the summit held just last month here in Bethesda, in the

Washington area—convene regularly experts to help us to update

and renew the areas of highest priority and then to establish milestones, just what we need to accomplish year by year in order to

translate those priorities into the success that is the objective of

the plan.

In terms of some of the accomplishments that we have seen in

recent years, as noted in some of my opening comments and comments for the record, we have seen progress in the ability to identify early stages of Alzheimer’s disease in individuals long before

the appearance of symptoms, giving us opportunities that just did

not exist years ago to intervene with new treatments aimed at

newly identified molecular targets and to understand whether they

appear to be working or not by tracking biomarkers, again, long before we would identify progression to symptomatic disease. This is

an example of the kind of progress we are making.

I should add, much as we are pursuing this kind of research, we

are also committed to important work to sustain the quality of life

for those affected and their caregivers.

The research proposals that are coming from your State and

across the country are enormously gratifying and exciting.
24 

Coupled with it, I will say from our perspective, is the enormous

disappointment, in fact, pain and anguish of the great number of

those meritorious applications that we are unable to support.

We are making progress, without question, toward an ultimate

goal. The pace of that progress is being limited by the amount of

research that we can support.

Senator SCOTT. Thank you, sir.

Thank you, Madam Chairwoman.

The CHAIRMAN. Thank you very much, Senator.

Senator Whitehouse.

Senator WHITEHOUSE. Thanks very much, Madam Chair.

Let me open with a question and then make a comment. The

question will be for, I guess, Dr. Hodes and Dr. Petersen.

Could you—I was—I am on the Budget Committee, and we have

got the budget on the floor. I have not been able to be here for the

whole hearing.

Could you be a little bit more specific about what you think the

prospects are for a cure, how confident you are or how many viable

paths toward a cure there are, so that a nondoctor like me can get

a sense of how much confidence we can have?

Dr. PETERSEN. Thank you, Senator Whitehouse.

An excellent question, a difficult one to answer definitely, of

course, but I think that there is enough exciting research out there

right now, perhaps on new targets.

This is a complex disease. It is not just a single-cell disease but

really involves networks in the brain, so there are multiple targets

out there.

We are somewhat encouraged by a report just last week that one

of the drugs that is under investigation for Alzheimer’s disease to

remove one of culprits, the plaques, the amyloid plaques in the

brain, in early phase one results indicated that, in fact, there may

be a path forward with this particular therapeutic insofar as the

plaques were reduced as they measured them in patients over a

year and the patients improved clinically relative to those who

were on placebo.

Very early phase one study. They are moving forward with phase

three. I think it is this type of discovery that is going to lead to

a hit, or more than one hit, in the relatively near future.

To say how many, when, is very difficult, but I am encouraged

that we are on the precipice of really handling this disease one way

or another.

Senator WHITEHOUSE. Dr. Hodes, briefly.

Dr. HODES. I certainly reinforce very much what Ron has said.

We do not know yet in this complex disease exactly which are

going to be the optimal targets or the combination of targets, so

that, our integrated approach now with input, again, from all the

brilliant minds that we can converge on the question, is to be taking examples such as those which Ron mentioned, some of the best

candidates for treatment now, and beginning the most rigorous

clinical trials while, at the same time, recognizing that it is important to maintain early discovery efforts in basic science, looking for

molecular and genetic targets, and building those into the next candidates for intervention, so that, we may have short-term successes

with some of the current understanding, but we have couple that
25 

with a commitment toward developing deeper and deeper insights

for better and better approaches to the future.

Senator WHITEHOUSE. Well, it is inspiring to hear that, but I am

struck by the same fact that my colleague, Senator Warren, was

struck by.

Having just worked through the budget at the Committee level,

having seen the House budget, being on the floor with the Republican budgets right now, you know, people can talk a good game,

but the fact of the matter is that if you like sequester the House

budget cuts below sequester on discretionary nondefense spending

by nearly $300 billion. It is going to be devastating if a budget like

that goes through.

The fact that the House Republicans were willing to support that

is a statement that nobody in this room should ignore, about the

value of the support, not just for the research but also for the support of families who have got it already, as Ms. Stemley said so eloquently.

I have heard speeches about how critical our deficit is and how

we have to address our deficit.

We had a pair of Republican senators last night on the floor, saying how critical it was to invest more in national security.

We hear people talking about how critical it is to invest more in

medical research.

When it actually comes to the budget, well over a trillion dollars

goes out the back door of the tax code through tax loopholes,

through favored rates for people.

Guess what? A lot of that stuff got brought in by people who are

using their political power to get benefits for themselves. A lot of

that stuff is pretty disgraceful on the merits.

Do you know how many tax loopholes either the Senate Republican budget or the House Republican budget closed to address the

deficit or closed to address national security or closed to address

medical research? Zero.

The true primary operating principle of both budgets is that

every tax loophole is sacred and everything else comes second.

It is very frustrating to sit here and hear you testify in such good

faith and hear such prospects for progress and know how many

people this illness affects and be in an environment in which every

tax loophole, no matter how disgraceful, is viewed by some of us

as more important than all of those issues.

My time is expired.

The CHAIRMAN. Before I call on the former chairman of this Committee, Senator Nelson, with whom I worked so closely in the last

Congress, I do feel compelled to respond to the senator’s comments.

You know, Alzheimer’s affects people whether they are Democrats, Republicans, Independents, Greens, males, females, Caucasians, Asians, African-Americans. It affects all of us, and it touches

all of us, and the worst thing we can do is to make this a partisan

issue. 

I have led the fight for more funding for Alzheimer’s for years,

and we have made not nearly enough progress, but we have made

some incremental progress, and it has never been a partisan issue.

With all due respect to my dear friend from Rhode Island, I

would say if we want to achieve what everyone in this room wants
26 

to achieve, and that is to get a doubling of the funding as soon as

possible and then increase the funding to the $2 billion that has

been recommended by the council, let’s work together. Together.

Senator MCCASKILL. I agree with everything the chairman has

said. 

I just want to say that we do have our colleagues that will work

together, and we are fortunate that one of them is chairman of this

Committee. 

We do have challenges that are represented by—and I am not

pointing out just Republicans or just Democrats, but there are

Members of Congress that do not see the value in funding government agencies that do research.

You know, what we will find is there will be some of our colleagues that will work in a bipartisan way, and I hope that—I

think you know Senator Nelson is one of those. I am one of those.

You are one of those, but what we have to work at and what we

want—— 

Senator WHITEHOUSE. Do not leave me out. I am one of those.

Senator MCCASKILL. And you are one of those.

I want the advocates to work on realizing that it is time to hold

everyone’s feet to the fire regardless of their party, that the reality

needs to match the rhetoric, that you cannot engage in the rhetoric

of ‘‘I support Alzheimer’s research’’ and then vote to cut funding to

NIH. That does not work.

It will not be my colleague, Susan Collins, that will be in favor

of that, but there will be some, and those are the people you need

to focus in on no matter what party they are.

I think that is the issue that some of my colleagues on our side

were discussing, that not everyone is as reasonable as the chairman of this Committee in terms of working in a bipartisan way.

Some just want to dismantle public funding of everything from

many of the long-term care programs to, in fact, NIH funding, so

not you, but others.

The CHAIRMAN. Senator Nelson, it is great to have you here

today. 

Senator NELSON. Well, it is great to be back, Madam Chairman,

and thank you for the great partner that you were in leading this

Committee over the last couple of years.

Now to those of you in the audience, you applauded to two

things. 

You applauded higher money spending for NIH for research, and

certainly, that bar graph right there indicates that more is needed,

over $5 billion for cancer, $3 billion for HIV/AIDS, $2 billion for

cardiovascular, and $586 million for Alzheimer’s.

You also applauded bipartisanship. Well, I want to give you an

assignment. 

Now this Committee is bipartisan. That is the way it has been

run the last couple of years and the way it is being run now by

the two leaders.

When money is being cut according to something called a sequester, which is nothing more than a meat cleaver across the board

of the entire budget—and that happens to get NIH as it did three

years ago when Dr. Francis Collins, the head of NIH had to cancel

700 medical research grants to research institutions around the
27 

country, including universities and medical research institutions—

then that is going to affect the very thing that you are so concerned, and so my assignment is that you need to have a prayer

session with the Members of Congress who are voting to cut NIH.

Now let me say to Ms. Stemley and Mr. Gasby you are doing incredible work to make sure that your family is taken care of, and

we understand the sacrifice and the unselfishness with which you

approached it.

Ms. Smith, it takes courage to raise awareness of the disease, so

thank you for being here and highlighting that.

Dr. Hodes and Dr. Petersen, it is great to see both of you again.

Thank you for coming back to update us and thank you for your

continuing work.

Dr. Weirman, when you have conversations with your patients,

can you broach the subject? Do you tell them what they are going

to have to plan? Because here is a report in the Washington Post

that says that less than half the people with Alzheimer’s reported

that they had been told about their dementia.

What do you do when you advise your patients?

Dr. WEIRMAN. I work with folks with dementia at all stages.

What they hear is different at different stages.

Early on, it is about the diagnosis and what treatments are

available and where they are at now, addressing current issues.

Usually, in subsequent visits, it is about future planning, and

that involves them and their caregivers or surrogate decisionmakers, assuring they have a plan in place for what they want to

do, what is important to them, but also includes looking at what

their financial situation is and understanding what is realistic for

them to plan for in the future.

I recommend a lot of consultation with elder law attorneys and

ask caregivers to be realistic about what they can offer. I think

that that is really important, giving caregivers permission not to

take it all on their shoulders.

Unfortunately, I do have to advise at times that our hospital system is the ultimate backup. If they get into crisis despite all of our

planning, that is where people have to go in our community. It is

really unfortunate because it is really not a great place to be when

you have cognitive impairment.

It is very much a part of my practice to do that.

I think it is really challenging for primary care physicians who

take care of a broad array of patients to approach that routinely

in their practices, and we are working with them, hopefully, to

begin incorporating that.

I think whether you have dementia or anything else you have got

to talk with your families; you have got to make sure that you are

thinking about the what-if’s, and it is hard for us to do that, but

we all need to be doing that, whether we have dementia or not.

Senator NELSON. Well, all of you, this is one of the larger audiences for a Committee hearing in the months that we have started

this new Congress, and I would take your concern, your energy,

your activism and share it.

We are right on the cusp, and the researchers out in NIH will

tell you this. We are right on the cusp of finding a lot of cures for

many different kinds of cancers. We know a lot more about cardio-
28 

vascular, and look at all of the advances in HIV/AIDS; they are

even talking about taking some medicines, attaching them to the

HIV virus as a way to attack some cancers. I mean, it just blows

your mind what is going on.

What we need to do now is to focus and get the research done

to be on the cusp of solving this problem in Alzheimer’s.

Thank you, Madam Chairman.

The CHAIRMAN. Thank you very much, Senator Nelson.

I know that Senator Kaine is on his way. We will do a couple

more questions in the hopes that he can get here.

Senator MCCASKILL. He is here.

The CHAIRMAN. Boy, what good timing.

While he is getting set up, I am just going to followup with a

quick question for Dr. Weirman, and that is I was surprised to

learn from your testimony that the diagnosis and treatment of patients with dementia is not a routine part of the clinical training

for most health care providers.

If you look at the trajectory of Alzheimer’s and other dementias,

and the number of people and their families who are going to be

affected in the near term—we hope we will have a cure or means

of prevention or effective treatments for the long term—that really,

that lack of training really, surprises me.

Is that changing now, in your judgment, and why do you think

there is not more emphasis put on that training?

Dr. WEIRMAN. There has been a lot more emphasis in the last

few years as far as setting milestones for medical education all the

way up through residency training. I think we have made some

headway in the medical community.

I think it is incredibly variable when individuals go to different

programs, what they get. Most individuals will get training in older

adults but not specifically in cognitive impairment and working

with dementia, and what they get probably is not enough at this

time. 

In my experience, this disease—each of us has our own personality and experiences, and you throw a disease that affects your

thinking ability on top of that, and it looks very different in different individuals.

It takes a lot of experience and a lot of training to work with

these individuals and their families, and you really need to do that.

There needs to be more emphasis and time on this.

This goes from medical providers. It goes from your front-line

staff, whether they are office assistants and people answering the

phone and scheduling appointments, in medical communities.

Then we need to be working within our—outside the medical

community, in our larger communities, with education and training

for identification. We have done a lot in the banking community

about looking for exploitation and that sort of thing, and we need

to continue that. Much like at one time we were training hairdressers to look for evidence and talk with their clients about evidence for physical and emotional abuse, we need to be doing similar things with other people in our community to help us identify

individuals who are having issues so that we can work with them.

The CHAIRMAN. Thank you.

Senator Kaine.
29 

Senator KAINE. Thank you, Madam Chairwoman, and thank you

for filibustering a bit until I got here. This was deeply important

to me, but I was in an Armed Services hearing, and particularly,

I want to thank Mr. Gasby and Ms. Smith.

Thank you guys so much for doing the work that you are doing

to really educate and demonstrate the challenges of early onset

Alzheimer’s. It is such a difficult thing, and obviously, in the midst

of a difficult thing, to try to help others is really laudable. I really

want to express my appreciation to you for that.

This is an issue I am dealing with in my own family, and it is

just new, and it is hard to figure out, and the challenge for family

members and caregivers, it is just a hard thing.

Can I just begin by expressing my gratitude to you for being willing to be courageous and, hopefully, educate others about this?

Mr. GASBY. Thank you very much, Senator Kaine.

You know, we are here because we have been fortunate and we

have been blessed with some of the great fruits of this great country of ours.

When you look around, and you start to get involved and give

back, and you see people struggling, and you see single head of

households who do not have anyone, any resources, and they are

dependent totally upon the system, and you see how they are falling through the cracks, you realize that if you are going to stand

for something it has got to be more than just yourself. You know.

Coming from Brooklyn, from humble beginnings, and having had

a chance to meet one of the greatest human beings I have ever

met, my wife, the nicest person, to see what she—she taught me

how to give and what philanthropy was all about.

I know what we have to do, and it is not about us.

It is about those folks behind us. It is about those folks who—

you know, at night, when you cannot sleep because you know there

is a person in another room that is going through holy hell, and

you have got to get up and go to work, or you have got to go and

help change them, or you have got to go quiet them down, or you

just have to be able to just hold them.

You understand that if you are going to stand for anything,

stand for people who need the help the most, and the caregivers

need it, and we have got to make a difference.

I am blessed that I have a great partner, but I also am blessed

that because of the opportunities we have been afforded, to try to

give back, so thank you.

Senator KAINE. Well, you know, we do not necessarily choose

what happens to us, but we do choose what we do with it.

You guys have made a really good choice, and all who are here

trying to, you know, be a beacon of hope in a situation that can

seem hopeless but for which there is reason to be hopeful.

Mr. GASBY. Senator, I believe in one thing in life. You play the

hand you are dealt, but you play it to win.

Senator KAINE. Yes, amen to that. Amen to that.

Well, let me ask—I want to ask now to the other witnesses, especially those from the research community. Talk to me a little bit

about early onset Alzheimer’s and from what the research is telling

you. You know.
30 

How is it different? Or, is it not really different; it just occurs

earlier in life?

Are we dealing—is it the same medical condition as later-onset,

or is it different in significant ways that we understand it, if you

could? 

Dr. PETERSEN. Thank you, Senator Kaine, for that question and

comment. 

Early onset disease is really divided into various stages. It really

is defined by the age of onset, but we have learned in recent years

that it is probably the same underlying disease process.

Now having said that, a person is affected with Alzheimer’s disease, say, in his or her 50’s versus somebody in their 80’s may have

different contributions to the clinical picture.

They look the same. They are forgetful. They develop problems

with thinking and activities of daily, but in the older person, there

is the amyloid and the tau, the plaques and the tangles, but also

some other pathologies—vascular disease and a variety of other

things. 

In the younger-onset person, it is more likely to be a pure form

of the disease with the amyloid protein, perhaps the tau protein.

I think both of them are comparable. Treatments that are likely

to be effective for young-onset will work for old-onset and vice

versa. 

There may also be a slight predilection toward a more genetic

contribution in the younger-onset disease, as with most diseases.

When they occur earlier in life, they tend to be more genetically

loaded than later in life.

Basically, the biology of the diseases are quite comparable, lateonset and early onset.

Senator KAINE. Any other answers to that question?

How about the caregiver side? Because we have folks here representing organizations that do a lot of work with caregivers.

I am certain that you have already testified a good bit about recommendations you might have for us.

Just the sheer numbers of caregivers in my State and, I am sure

in all of our states, is just kind of staggering. You know.

What are the kinds of things we ought to be considering from a

policy level to make the caregiving task, although will not an easy

one, but maybe to make it a little bit—lighten the load a little bit?

Ms. STEMLEY. Thank you, Senator Kaine.

I am here on behalf of caregivers, but I am one of fifteen million.

There are many caregivers in this room that have different stories. Many of these stories this week—I have heard a lot of stories

this week, and they are all different.

We share very similar things, though. We share the same sorrow.

We share the same pain. We also share the same hope, and we

share the same vision that this is going to end in our lifetime and

that we are going to fight until we see this end.

One of the things that we are here and that we are collectively

coming together as one fist, and that is asking—you are asking for

what we need now, and what we need now at this point is for the

HOPE Act to be passed, and we need it to be passed in this Congress.
31 

We need it because it is going to improve caregiving and care

planning services for individuals like myself, for families, for those

that are living with dementia, that once they receive that diagnosis

they walk out of their doctors’ offices, one, receiving the diagnosis,

and then two, knowing what the next steps are.

That Alzheimer’s disease diagnosis will be in their medical

records, and it will follow them, and it will go with them wherever

their lives may take them.

Whether they begin to then develop diabetes or anything else,

they will know that this doctor will know, hey, this patient has Alzheimer’s, and so there are some additional intricate needs that I

need to provide for this individual to give the best possible care

that I can, and so we need this Act to be passed in this Congress.

We need it now for—you know.

My situation is a little different because I am five, six years

down the road now. Caregiving and care planning services did not

happen for me exactly the way I probably would have wanted it to

had the HOPE Act been in place for me, but it can help a lot of

other people. It can help millions of people.

We need that help to make this load easier because it is hard,

and we need help to carry this burden because we are carrying it

the best that we can, but we are just asking for help.

Senator KAINE. Great. Thank you very much.

Thank you, Madam Chair.

The CHAIRMAN. Thank you, Senator.

Senator Tillis is on his way back. That means I get to ask another question.

My question is for both Dr. Petersen and Dr. Weirman.

Dr. Weirman mentioned earlier that you look at delirium as well.

I am wondering if there is research that shows that delirium in

older people, after surgery where a general anesthetic has been involved, which I have seen cases of, can be a trigger.

I see Dr. Hodes nodding also. Maybe I will start with him.

Is there a link? Can that be a trigger of Alzheimer’s?

Is there a link between the delirium that you sometimes see in

older people after an operation that involves a general anesthetic

and dementias?

Dr. HODES. Well, thank you.

Good points, and then the nodding is because there is, in fact,

good data to a couple of points.

The first, whether delirium can be succeeded, or followed, by a

decrease in cognitive function and a progression of dementia. The

answer appears to be yes, but so also for general anesthesia, even

if there is not delirium.

Often, after general anesthetic, there can be a short-term decline

in cognitive function. Most people recover fine, but the failure to recover relatively quickly is also predictive of long-term decline.

Both of these insults, whatever exactly that means, to the brain

as a result of deep general anesthesia or delirium, do seem to be

capable of accelerating the functional decline.

The CHAIRMAN. Dr. Petersen?

Dr. PETERSEN. I agree with Dr. Hodes.
32 

It also pertains to the issue of what we call cognitive reserve;

that is, if the brain is injured, how much resilience does it have to

respond? 

Sometimes with people who are developing a dementia of one

kind or another, and then undergo general anesthesia, they may

have a lower threshold for becoming delirious in that context.

It may contribute to the downward decline, but it also may just

be a stress test on a system that is starting to gradually fail and,

consequently, be a harbinger of what could be dementia in the future. Difficult to figure out cause and effect there, but it is common.

The CHAIRMAN. Dr. Weirman, and your response also because I

have been discussing this issue for a couple of years with anesthesiologists from Maine Med, where you work, and others on whether

they should be doing more with older patients to be careful about

what kind of anesthetic they use, only use a general one if it is

really necessary.

Could you illuminate us on this as well?

Dr. WEIRMAN. I think it gets at to why we are here is we need

more research so that we know what to advise.

You know, I certainly see people who seem to be functioning

quite well before a surgery and then are not doing so well after,

and I think, as we have more research now where we can identify

that there are changes happening before it is evident in day-to-day

life, my suspicion is that it is those people that we see have the

decline after, and as it is, it is like a stress test that you fail—is

kind of how I have thought of it as well.

I think we just do not know.

I think that definitely in an older population, doing more assessment prior to major surgeries, if it is a planned process so that you

can at least understand what the risks are going into it, so that

people can incorporate that into their decisionmaking, I think is

really important.

As is outlined, I think we need more research into what anesthesia is best and how to further risk-stratify folks so that we can

do the right thing for them and not put them down this path that

we cannot stop.

The CHAIRMAN. Dr. Petersen and Dr. Hodes.

Dr. PETERSEN. If I may, this is a sufficiently important issue that

the Alzheimer’s Association has actually established a professional

interest group that is looking at this very issue. They meet at the

international conference every summer, so this is a hot topic with

regard to brain resilience and cognitive function and its role in the

development of dementia, so it is a good question.

The CHAIRMAN. That is really interesting. I was not aware of

that. 

Dr. Hodes.

Dr. HODES. Again, extremely good and important question.

Research directed at this actually now includes approaches to

using EEG measurements of brain function during anesthesia, with

an attempt to monitor the level of anesthetic, with an eye toward

brain activity and anesthesia and to look at the effect of that kind

of monitoring on cognitive outcomes, so that is one area where we
33 

may be able to develop some rather quick answers that will make

a difference.

The CHAIRMAN. Interesting. Thank you.

Senator Tillis, we are delighted that you made the effort to come

back. 

Senator TILLIS. If I am out of breath, or if I seem out of breath,

it is because I am. I was running back.

I apologize I had to leave. I had a conflicting Committee assignment.

I want to thank the chair and the ranking member for their leadership.

This is a very important issue to me, personally, because I have

been a caregiver.

I just want to let you know that we not only need to focus on,

excuse me, the research, but we also need to make sure that we

have the right funding, Madam Chair, excuse me, to make sure

that the caregivers are—that they have the resources and the education that they need to do the best job for caregiver because in my

personal experience I was a grandson of a grandmother who got

Alzheimer’s at a relatively early age, and I was not quite sure what

I needed to do to help my grandmother, but I was pretty certain

that my mother and her two sisters were not doing it the right

way, and other family members.

That is why I went back and took some college courses to actually better prepare me to help my mother and my two aunts, who

were the primary caregivers, to be a better caregiver.

I certainly—I am not going to ask you questions because I know

you have been questioned to death. I will read the record. I just

wanted to communicate, first, how important it is for something

like this.

Another area where I have a lot of passion is around Alzheimer’s—or, not Alzheimer’s. Around autism.

This is a classic example where I think the head and the heart

meet because with the investment of resources we do the right fiscal thing, but we do tremendous transformational impacts for those

who are afflicted with Alzheimer’s.

We need to invest, and we need to invest in the right research.

We need to identify some of the most promising research—I read

earlier this week about some other potential promising treatments—and make sure that we are putting those on the front

burner because in a State like North Carolina, where over the next

ten years I am going to see the population of 65 and over go up

about 30 percent, those suffering from Alzheimer’s in a State that

is growing an increasingly large aging population.

We need to make sure that we educate our members here in the

House and the Senate on the compelling fiscal reasons to do something that produces a transformational outcome.

I want to thank you all for being here. I want to thank all the

folks in purple.

My daughter would love this because it is her favorite color.

I want to thank you all for being here and advocating. I really

encourage you to reach out and explain the transformational opportunity we have to make this a priority.

Thank you, Madam Chair.
34 

The CHAIRMAN. Thank you very much, Senator, and well said.

We were talking earlier that when we are spending $226 billion

as a society on a disease that is going to bankrupt our Medicare

and Medicaid programs, that if the suffering of families does not

move you, the economics of it ought to move Congress to do the investments that are necessary, and your focus on caregivers is absolutely appropriate, too.

I want to thank our witnesses today for their extraordinary testimony. Each of you has brought so much to the debate and discussion today, and I think you have given us a very comprehensive

look at a devastating disease.

I want to assure you, as the co-chair of the Alzheimer’s Task

Force in the Senate, that I will continue to work with my colleagues like Senator Tillis and like Senator McCaskill to make sure

that we are keeping a focus on the disease, that we are educating

our colleagues, and that we are increasing the funding.

We cannot do it without your help. As I said, I have an amendment that I am going to ask your help on, on the budget, to have—

essentially get the Senate on record for increasing the funding level

that NIH gets for Alzheimer’s research, and I hope as you do your

office visits that you will urge your senators to support that

amendment. 

It is either going to come up this afternoon or tomorrow. You

may not have time if it is this afternoon, but text messages work,

too. 

I want to thank all of you for traveling from all over the country

to come to Washington to tell your personal stories and to help advance the fight against Alzheimer’s.

As we have said today, the color purple represents the Alzheimer’s movement. It is my hope that some day soon the color

purple will also represent those who survive Alzheimer’s.

We are going to keep the hearing open—the hearing record open

until Friday, April 3rd. There may be additional testimony or questions for the record.

Again, my sincere thanks to this wonderful panel and to all of

the advocates who are here today and everyone who participated

in today’s hearing, including my staff and Senator McCaskill’s staff

which have worked very hard and also share a real commitment

to the cause.

This concludes the hearing.

Thank you for being here.

[Whereupon, at 4:14 p.m., the Committee was adjourned.]
APPENDIX 

Prepared Witness Statements

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64 
Statements for the Record

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76 

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