[Senate Hearing 111-75]
[From the U.S. Government Publishing Office]



                                                         S. Hrg. 111-75
 
      THE WAY FORWARD: AN UPDATE FROM THE ALZHEIMER'S STUDY GROUP

=======================================================================


                                HEARING

                               before the

                       SPECIAL COMMITTEE ON AGING
                          UNITED STATES SENATE

                     ONE HUNDRED ELEVENTH CONGRESS

                             FIRST SESSION

                               __________

                             WASHINGTON, DC

                               __________

                             MARCH 25, 2009

                               __________

                            Serial No. 111-3

         Printed for the use of the Special Committee on Aging



  Available via the World Wide Web: http://www.gpoaccess.gov/congress/
                               index.html



                  U.S. GOVERNMENT PRINTING OFFICE
51-546                    WASHINGTON : 2009
-----------------------------------------------------------------------
For sale by the Superintendent of Documents, U.S. Government Printing 
Office Internet: bookstore.gpo.gov Phone: toll free (866) 512-1800; DC 
area (202) 512-1800 Fax: (202) 512-2104  Mail: Stop IDCC, Washington, DC 
20402-0001



                       SPECIAL COMMITTEE ON AGING

                     HERB KOHL, Wisconsin, Chairman
RON WYDEN, Oregon                    MEL MARTINEZ, Florida
BLANCHE L. LINCOLN, Arkansas         RICHARD SHELBY, Alabama
EVAN BAYH, Indiana                   SUSAN COLLINS, Maine
BILL NELSON, Florida                 BOB CORKER, Tennessee
ROBERT P. CASEY, Jr., Pennsylvania   ORRIN HATCH, Utah
CLAIRE McCASKILL, Missouri           SAM BROWNBACK, Kansas
SHELDON WHITEHOUSE, Rhode Island     LINDSEY GRAHAM, South Carolina
MARK UDALL, Colorado
KIRSTEN GILLIBRAND, New York
MICHAEL BENNET, Colorado
ARLEN SPECTER, Pennsylvania
                 Debra Whitman, Majority Staff Director
             Michael Bassett, Ranking Member Staff Director

                                  (ii)


                            C O N T E N T S

                              ----------                              
                                                                   Page
Opening Statement of Senator Herb Kohl...........................     1
Statement of Senator Arlen Specter...............................     2
Statement of Senator Mel Martinez................................     2
Statement of Senator Susan M. Collins............................     4
Statement of Senator Claire McCaskill............................     5
Statement of Senator Lindsey Graham..............................     6
Statement of Senator Mark Udall..................................     7
Statement of Senator Kirsten Gillibrand..........................     8

                                Panel I

Statement of Honorable Sandra Day O'Connor, former Supreme Court 
  Justice, Member of the Alzheimer's Study Group, Washington, DC.     9
Statement of Newt Gingrich, former Speaker of the House of 
  Representatives, Co-Chair, Alzheimer's Study Group, Washington, 
  DC.............................................................    13
Statement of Honorable Bob Kerrey, former Senator, President, The 
  New-School, Co-Chair, Alzheimer's Study Group, Washington, DC..    24
Statement of Maria Shriver, First Lady of California, Caregiver 
  and Advocate, Sacramento, CA...................................    33
Statement of Larry Butcher, Chair, Board of Directors Alzheimer's 
  Community Care, West Palm Beach, FL............................    44

                                APPENDIX

Prepared Statement of Senator Robert P. Casey, Jr................    61
Statement by Eric J. Hall, President and Chief Executive Officer, 
  Alzheimer's Foundation of America..............................    62
Statement prepared by Rudolph Tanzi, Ph.D., on The Cure 
  Alzheimer's Fund National Alzheimer's Disease Research Strategy    71
Testimony from Mary T. Newport, M.D..............................    78

                                 (iii)



      THE WAY FORWARD: AN UPDATE FROM THE ALZHEIMER'S STUDY GROUP

                            ------------ 



                       WEDNESDAY, MARCH 25, 2009


                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 10:36 a.m. in 
room SD-106, Dirksen Senate Office Building, Hon. Herb Kohl 
(chairman of the committee) presiding.
    Present: Senators Kohl [presiding], McCaskill, Udall, 
Gillibrand, Martinez, Collins, Specter, and Graham.

        OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN

    The Chairman. Thank you all. Thank you all so much.
    We do appreciate everyone's attendance here today, and 
today we will continue the discussion that we began last May 
concerning Alzheimer's disease and the crisis facing our 
Nation. At that time, two members of the Alzheimer's Study 
Group, Justice O'Connor and Speaker Gingrich, outlined plans to 
create a blueprint for tackling the largest problems associated 
with this disease.
    Today, along with Senator Bob Kerrey, they will outline 
their national security plan to identify, examine, and mitigate 
Alzheimer's greatest challenges. We are happy to have them here 
and grateful for them to bring our attention to this issue.
    The Committee has recently put forth several policy 
initiatives that complement the recommendations made in the 
study group's report. Senators Lincoln, Wyden, and Casey join 
me in introducing the Retooling the Healthcare Workforce for an 
Aging America Act, which would address our Nation's healthcare 
workforce shortage and provide support to the 44 million 
Americans who are caring for a family member, including those 
with dementia.
    My colleague Senator Martinez and I also have a bill called 
the National Silver Alert Act. Similar to the successful Amber 
Alert for children, the National Silver Alert Act enables 
families in local, State, and Federal law enforcement to 
quickly coordinate a search when a senior with Alzheimer's or 
dementia has wandered away from home.
    In addition to the members of the Alzheimer's Study Group, 
we are pleased today to welcome Maria Shriver and Larry 
Butcher, who have been tireless advocates on behalf of both 
their own family members as well as the millions of Americans 
living with this disease.
    We are so happy to have this hearing today, and I would 
like to call on first Senator Specter for his remarks, then 
Ranking Member Senator Martinez, and then Susan Collins.
    Senator Specter.

               STATEMENT OF SENATOR ARLEN SPECTER

    Senator Specter. Thank you, Mr. Chairman.
    Thank you, Senator Martinez, for yielding to me for just a 
moment.
    I want to welcome this extraordinarily distinguished group 
on such a very important subject and the large number of people 
who are filling this large hearing room.
    There is no doubt about the tremendous impact that 
Alzheimer's has on the health of Americans and really 
worldwide. Having been chairman and now ranking of the 
Appropriations Subcommittee which funds the National Institutes 
of Health, I wanted to say a word of assurance of our concern 
for funding on Alzheimer's.
    Senator Harkin and I, as you may know, have taken the lead 
on increasing the funding generally from $12 billion to $30 
billion, and it is well known there was an additional $10 
billion added in the stimulus. The stimulus has been highly 
controversial, but I think few would deny the importance of 
that $10 billion allocation.
    The note that I wanted to sound this morning was to get the 
support of people who are here and other activists on medical 
research to put that $10 billion in the base, not to have it as 
a one-shot proposition, but to start next year from $40 
billion, not $30 billion.
    I understand the allocation for Alzheimer's is not 
satisfactory. That has been left largely to NIH so it is 
nonpoliticized. But they take a suggestion or two every now and 
then from the appropriators. [Laughter.]
    So stay tuned.
    Thank you very much. [Applause.]
    [The prepared statement of Senator Specter follows:]
    The Chairman. Thank you very much, Senator Specter.
    Senator Martinez.

       STATEMENT OF SENATOR MEL MARTINEZ, RANKING MEMBER

    Senator Martinez. Thank you, Mr. Chairman, and thank you 
for calling this very important hearing.
    I want to welcome all of those who accompany us here today, 
especially our very distinguished panel.
    With the number of Americans living with Alzheimer's 
disease expected to increase as our Nation's population becomes 
increasingly older, the need to address it has become more and 
more important. Almost half of all Americans who are 85 and 
older are afflicted with Alzheimer's disease. With no cure and 
limited treatment options, I am looking forward to hearing 
about how we might improve the ways we treat the disease and 
minimize its impact on our Nation and our families.
    Because Alzheimer's is a progressive disease, its effects 
are often felt beyond households and the families where 
treatment is administered. In many cases, the effects can reach 
an entire community.
    Finding ways to provide the special care and attention 
necessary for this devastating disease has been a primary goal 
of cities and States across the Nation. Community organizations 
have sprung up to offer care, support, and education to 
patients, caregivers, medical professionals, and members of the 
community.
    In my home State of Florida, officials at all levels of 
government have coordinated to develop a system known as 
``Silver Alert.'' Chairman Kohl mentioned our efforts in that 
regard at the Federal level as well. It helps to offer a 
uniform response and cater to the unique needs of individuals 
like those suffering from Alzheimer's. Silver Alert was issued 
in October 2008 and has since led to the direct rescue of nine 
elderly Floridians as of last week.
    By knowing some of the symptoms of dementia like wandering 
and confusion, Florida communities have been able to work 
together to improve response and stand ready to assist seniors 
with special needs. States like Florida have become a model for 
the Nation to encourage other States to adopt similar programs.
    As Senator Kohl mentioned, we have come together, the two 
of us, to sponsor this Silver Alert legislation at the national 
level. The legislation would improve coordination among law 
enforcement agencies across jurisdictions to find missing loved 
ones in need of special care. The bill has already been passed 
by the House and is currently before the Senate Judiciary 
Committee.
    Support from the medical research community is another 
element critical to addressing Alzheimer's. Universities and 
other research institutions are working to improve 
understanding of the disease and are developing drugs, 
therapies, and other interventions to treat and slow the 
disease.
    Healthcare communities have sought to establish best 
practices for working with patients and caregivers. Many 
include evidence-based models for patient care and caregiver 
support. As a result, some patients living with Alzheimer's are 
staying at home longer with family and loved ones.
    Medical researchers have developed a number of the ways to 
relieve the burden placed on family caregivers and others with 
Alzheimer's. One of the ways is through the use of assistive 
technology. One example of this includes a talking alarm 
reminding the patient to take medication on time. Another is a 
scale hooked onto the Internet so that it can send weight and 
other vital signs to the providers.
    Nationally, organizations have formed to provide 
information on advocacy, such as the Alzheimer's Association. 
These organizations help raise the Nation's awareness about the 
disease and support efforts at the Federal level to improve the 
care that patients receive.
    For all of the advances that have been made to assist 
Alzheimer's patients, their caregivers, and loved ones, there 
is still much more that can be done. Right now, the U.S. does 
not have a coordinated system for long-term care. People 
seeking information or services are confronted with a 
disjointed and complex web of public and private options.
    In some cases, they encounter criminals who know how to 
defraud a patient or family in crisis. These concerns are 
shared with those living with Alzheimer's and many American 
seniors.
    I am looking forward to hearing the testimony from our 
witnesses today and want to thank them for being here.
    I want to thank all the caregivers, health professionals, 
community leaders, and providers who are here with us today. 
Every day, you work to help our loved ones living with 
Alzheimer's receive the best care possible. I look forward to 
working together to find ways to understand a disease that 
affects so many families in our Nation.
    Thank you, Mr. Chairman. [Applause.]
    The Chairman. Thank you, Senator Martinez.
    Senator Collins.

             STATEMENT OF SENATOR SUSAN M. COLLINS

    Senator Collins. Thank you, Mr. Chairman.
    Mr. Chairman, thank you so much for holding this very 
important hearing that is of such tremendous interest, as you 
can see by this packed room.
    Along with Senator Mark Warner, I have the privilege of co-
chairing the bipartisan Congressional Task Force on Alzheimer's 
Disease. I am particularly interested today to hear about the 
new report released by the Alzheimer's Study Group, chaired by 
former Speaker Newt Gingrich and former Senator Bob Kerrey.
    Alzheimer's is a devastating disease that takes a 
tremendous personal and economic toll on both the individual, 
the family, and our country. In my own family, we are all too 
familiar with the pain and hardship associated with 
Alzheimer's. In fact, Alzheimer's is so common in my own family 
that we refer to it as ``the family illness.''
    We are not alone. An estimated 5.3 million Americans have 
Alzheimer's disease, more than double the number in 1980. In 
addition to the extraordinary suffering that Alzheimer's 
causes, Alzheimer's costs the United States just under $150 
billion a year, primarily in nursing home and other long-term 
care costs.
    That figure will soar as the baby boom generation ages. As 
the baby boomers move into the years of highest risk for 
Alzheimer's, a strong and sustained research effort is our best 
tool to slow the progression and ultimately prevent the onset 
of this heartbreaking disease.
    Our investments in Alzheimer's research have begun to pay 
dividends, and effective treatments are tantalizingly within 
our grasp. Unfortunately, however, while the number of 
Alzheimer's cases has continued to climb, funding has been flat 
over the past 5 years, and we cannot allow that trend to 
continue.
    For every dollar that the Federal Government spends today 
on the costs of Alzheimer's care, it invests less than a penny 
in research to find a cure. That simply does not make sense. It 
is time for us to put our foot back on the accelerator and 
redouble our research efforts. [Applause.]
    We really have only two choices. We can sit back and 
continue to pay the bills and endure the suffering, or we can 
aggressively pursue a national strategy aimed at preventing, 
delaying, and eventually curing this debilitating disease.
    In addition to funding for research, we must also do more 
to support Alzheimer's patients and their families. I have 
sponsored legislation to provide a tax credit of up to $3,000 
to help families meet the costs of caring for a loved one with 
a long-term chronic disease like Alzheimer's.
    We also need to do more to encourage more Americans to plan 
for long-term care needs by providing a tax deduction to help 
them better afford to purchase long-term care insurance. As we 
look at comprehensive healthcare reform, we need to ensure that 
long-term care systems get equal treatment and should be part 
of the debate.
    Mr. Chairman, in July 2007, I had the opportunity to join 
Speaker Gingrich and Senator Kerrey at a press conference to 
kick off this tremendous effort. They have done a fabulous job, 
and they have brought together an incredibly talented and 
diverse group of the best thinkers in our country, including 
Justice Sandra Day O'Connor.
    I know that their effort, with our support, is going to 
make real progress. So thank you for your leadership.
    Thank you. [Applause.]
    The Chairman. Thank you, Senator Collins.
    Senator McCaskill.

             STATEMENT OF SENATOR CLAIRE MCCASKILL

    Senator McCaskill. Thank you, Mr. Chairman.
    I do not have a formal opening statement, but I want to 
recognize the distinguished panel. I want to, first, recognize 
the fact that on this panel is a woman who has been a role 
model for me for most of life.
    At the point in time that she donned a black robe on the 
national scene, I was a very young lawyer right out of law 
school. At that point in time, the only women I had seen in a 
black robe were in the church choir. [Laughter.]
    So, and I think she has been a model of the kind of public 
servant that all women strive to be, and it is an honor to have 
her here.
    I also obviously want to recognize-- [Applause.]
    I want to recognize the first lady of California for all 
the work she has done and especially the influence she has had 
on the Governor of California. I think this is the perfect time 
for you to go to work on Newt Gingrich. [Laughter.]
    If you could-- [Applause.]
    Since we have got him here, I think you can work your 
magic, First Lady.
    Then the last recognition. I don't know you, Mr. Butcher, 
but I have to recognize the president of The New School because 
my daughter is a sophomore at The New School and called me the 
other night and said she was sick of it. Sick of school, that 
is--not The New School. She loves The New School. [Laughter.]
    But has enjoyed her educational opportunities at your 
university and thinks you are doing many things the right way.
    I want to just say that I think there are two issues that I 
would like to learn more about in the process of this hearing. 
One is are we doing enough to support the research community? 
Are we elevating science as we should in this area? Are we 
giving enough support to that area?
    Because, clearly, this is a disease that is a heartbreaking 
disease, and so many diseases are painful, but this is a 
special, different kind of pain. I think that it is incumbent 
on us in the Senate to find ways that we can better support the 
research community.
    The other issue I think is the long-term care issue, and 
how well are we doing at the job of educating long-term 
caregivers for the particular needs of the Alzheimer's patient? 
I know that in some long-term care facilities, there are many 
rules and regulations, for example, about freedom of movement.
    Well, this becomes a different issue with Alzheimer's 
patients in terms of their safety, but also their quality of 
life. Are we doing enough to educate and change and tweak our 
rules and regulations in the long-term care environment to make 
sure that the Alzheimer's patients are getting the kind of help 
and support they need?
    Obviously, then the other issue for me in a State like 
Missouri is are we doing enough in the rural areas? I know that 
there are groups that gather and provide support and assistance 
in the urban areas of my State because there is a critical mass 
of families that are dealing with the same issues, and there 
are groups that get together and provide counseling. We have in 
Missouri done a rural outreach services and support pilot 
project with funding from the Federal Government.
    But I look at the family in a rural community that is 
struggling with Alzheimer's, and the long-term care options are 
not good because, obviously, visiting the loved one is so 
important. So the long-term care options generally are not 
good, and there is not that support system.
    So any information that you can give our Committee as it 
relates to what more we can do in rural communities to help 
those families suffering with Alzheimer's would be greatly 
appreciated.
    Thank you all for being here today, and I look forward to 
your testimony. [Applause.]
    The Chairman. Thank you. Thank you, Senator McCaskill.
    Senator Graham.

              STATEMENT OF SENATOR LINDSEY GRAHAM

    Senator Graham. Thank you, Mr. Chairman.
    This is an impressive display of speakers and support 
network, and the one thing I have been intrigued about in 
Congress is that diseases have the bigger sponsors you can get, 
the more money you will get. You know, when a movie star adopts 
a disease, it is amazing how Congress responds.
    But look at the panel here. These are some of the most 
noteworthy people in the country speaking on behalf of the 
Alzheimer's Association. What I try to do is resist giving in 
because there are noteworthy people and a large crowd because 
there are a lot of diseases out there that nobody basically 
supports but are equally devastating.
    But the one reason I wanted to come to this hearing, and I 
might have to leave in a minute to talk to Mr. Bernanke, is to 
say that this disease is unusual in the sense that it 
represents what I think is the biggest challenge to the 
country--demographic changes.
    If we are going to get our fiscal house in order, we are 
going to have to deal with the fact that Americans, there are 
few workers and a lot of retirees, and Americans are living a 
lot longer than any other time in our history. That is the good 
news.
    But this is one disease that comes with aging, and it can 
hit pretty early on. But I think it would be smart for the 
Congress to listen closely and come up with basically a game 
plan, a war plan to combat diabetes and Alzheimer's. 
[Applause.]
    Because diabetes, as the Speaker knows--you have been 
championing this for years--when you look at our Medicare 
expenses, if you could get a handle on diabetes, it would 
dramatically change the expenses that Medicare has to assume.
    It is a preventable disease. It is devastating to people 
and has an enormous cost. This disease follows in that 
category, and the demographic changes in this country are real. 
This disease is tied to the demographic changes that we have to 
deal with. We have got to find a way to make sure that younger 
workers can support the systems that we are putting on their 
shoulders.
    Money spent now on Alzheimer's, I think, will pay great 
dividends and will help young Americans realize the American 
dream, improve the quality of life for older Americans and 
their families. So God bless you for taking up this cause. 
[Applause.]
    The Chairman. Thank you. Thank you, Senator Graham.
    Senator Udall.

                STATEMENT OF SENATOR MARK UDALL

    Senator Udall. Thank you, Mr. Chairman.
    I want to welcome the panel. I look forward to this 
important and, I am sure, compelling testimony. I want to make 
my remarks very short.
    My father, Morris Udall, who many of you knew and who 
served in the Congress, Mr. Speaker, with you, suffered from 
Parkinson's disease. So, this is personal for me, as it is for 
all of us.
    I wanted to associate myself with Senator Graham's 
compelling statement as well. There is so much at stake here. 
Thank you for being here. We are going to get this right.
    Thank you, Mr. Chairman. [Applause.]
    [The prepared statement of Senator Udall follows:]

                Prepared Statement of Senator Mark Udall

    I want to thank Chairman Kohl and Ranking Member Martinez 
for holding this hearing to address such salient issues related 
to Alzheimer's and how we can best tackle the challenges ahead 
in battling this disease. I want to especially thank our 
distinguished guests for being here today and for the work you 
have done and continue to do on behalf of this important cause 
and the millions of Americans and their families who are 
affected by this devastating condition.
    While the prevalence of Alzheimer's is, as you know, rising 
at an unsettling rate, the numbers are especially disturbing in 
my state of Colorado, which is projected to have one of the 
highest increases in diagnosis rates over the next decade. I am 
happy to say that the state-level response to this unwelcome 
trend has been promising, as evidenced by last May's creation 
of the 22-member Colorado Alzheimer's Coordinating Council. 
This group, which comprises representatives from industry, 
government, business, as well as the Alzheimer's community, had 
its first meeting this past Friday toward developing a 
comprehension plan for addressing our state's specific 
challenges, and I am excited to see the effort take off.
    With this Council beginning its work in Colorado, I am 
especially looking forward to hearing this morning's testimony 
and to the findings of the national strategic plan being 
released later today. I trust that the report's broad-based 
goal to ``accelerate and focus national efforts'' will help 
bridge the divide between federal and individual state efforts 
across the country, allowing us to increase the efficiency, 
scope, and speed of our battle to reverse such an alarming 
trend.

    The Chairman. Thank you very much, Senator Udall.
    Senator Gillibrand.

            STATEMENT OF SENATOR KIRSTEN GILLIBRAND

    Senator Gillibrand. Thank you, Chairman Kohl and Ranking 
Member Martinez, for holding this important hearing today.
    I want to thank these outstanding witnesses for their 
dedication and work on the significant issue that affects 
millions of families throughout the country.
    In my home State, there are over 330,000 people suffering 
from Alzheimer's disease. Of course, we all know that when one 
of our loved ones is affected by a debilitating illness, it 
touches all of us.
    It affects the lives of 650,000 unpaid family caregivers in 
New York who provide over 560 million hours of unpaid care, 
valued at $6.2 billion each year. These caregivers struggle to 
care for their families and find the help they need to keep 
their relatives at home.
    Sharon Boyd, senior vice president of the Rochester chapter 
of Alzheimer's Association, talked to me about cobbling 
together money and feeling like she was begging on a street 
corner to put together the funds she needed to provide 
comprehensive services to Alzheimer's patients and their 
families. Because of the lack of a coordinated effort and 
funding from the national level, Sharon does it on her own, 
combining different grants and donations from not-for-profits 
to serve the needs of her constituents.
    She told one story of a woman from Naples, NY, who cares 
for her husband who is suffering from Alzheimer's and was 
diagnosed with her own health problems. She couldn't leave her 
husband alone to attend for her own doctor's appointments. The 
Rochester chapter organized respite care for her husband so 
that she could attend to her own ailing health and take time to 
travel to the doctor when she needed care.
    Because of New York City's funding cuts to social model day 
programs, many of the programs have closed and can no longer 
offer scholarships. One woman from East Harlem attended a 
program from Monday to Friday, even showing up on the weekend, 
although it was closed. While she didn't know where she lived, 
she knew how to get to her daycare program. This program has 
been forced to close because of budget cuts, even as the number 
of people struggling with the disease continues to skyrocket.
    These stories are similar to stories all around the 
country. Some are lucky enough to receive the help from 
organizations like the Rochester chapter, but others are not. 
We must do better for those suffering from this crippling 
disease. We must streamline the process and make sure that the 
resources that we have get to the people that need them the 
most.
    I look forward to working with my colleagues to ensure that 
the patients and families have access to the services they need 
and that we provide the critical research dollars that are 
needed to fund the cure.
    Thank you again. [Applause.]
    The Chairman. Thank you. Thank you, Senator Gillibrand.
    Now we get to our panel. We are happy to welcome first 
Sandra Day O'Connor back to this Special Committee on Aging as 
our Nation's first female Supreme Court justice. She spent 24 
years on the court. Justice O'Connor began her work on the 
Alzheimer's Study Group in 2007.
    Our next panelist will be former Speaker of the House Newt 
Gingrich. While serving in Congress, Speaker Gingrich co-
chaired the Republican Task Force on Health for four years. 
Since leaving Congress, Mr. Gingrich has continued to work 
extensively on healthcare issues, and he is currently the co-
chair of the Alzheimer's Study Group.
    Our third panelist this morning is Senator Bob Kerrey.
    After three years in the Navy, Senator Kerrey served as the 
Governor of Nebraska and then served as a Senator here in 
Washington for two terms. He is currently the president of The 
New School in New York City, and he is also the co-chair of the 
Alzheimer's Study Group.
    Our next witness will be the first lady of California, 
Maria Shriver. She is an award-winning journalist, best-selling 
author, as well as the mother of four. As first lady, Ms. 
Shriver has used her voice to advocate on the behalf of women, 
the working poor, the mentally disabled, and families 
struggling with Alzheimer's disease.
    Our fourth panelist will be introduced by Senator Martinez.
    Senator Martinez. Thank you, Mr. Chairman.
    I would like to say a few words about Larry Butcher, who is 
the chair of the board of directors of Alzheimer's Community 
Care, Inc. Larry discovered the organization in late 1999 when, 
as an overwhelmed caregiver, he was able to find the kind of 
guidance and help that he desperately needed as he was caring 
for his beloved wife, who had been diagnosed in 1995 at the age 
of 55 with a form of Alzheimer's disease.
    Larry has served on the board of directors of Alzheimer's 
Community Care since April 2001. He has served as chair of the 
board of directors since July 2007, was appointed by Governor 
Jeb Bush as a member of the Florida Alzheimer's Disease 
Initiative Advisory Council in 2005, and he served as chair of 
the advisory council in 2007 and 2008 and remains as a member.
    Larry also facilitates a weekly support group that has 
average attendance of about 25 caregivers. So, Larry, thank you 
for joining us today. [Applause.]
    The Chairman. Justice O'Connor.

  STATEMENT OF HONORABLE SANDRA DAY O'CONNOR, FORMER SUPREME 
     COURT JUSTICE, MEMBER OF THE ALZHEIMER'S STUDY GROUP, 
                         WASHINGTON, DC

    Justice O'Connor. Thank you, Mr. Chairman.
    This Committee provided a wonderful opportunity for Speaker 
Gingrich and me to say something about the problems presented 
by the Alzheimer's crisis before we began our study about a 
year ago. We have now completed that study, and we appreciate 
very much the chance to give you a brief rundown on what we 
have concluded. Thank you for that opportunity.
    Now the statistics have not improved since we were last 
here. Alzheimer's disease is the sixth leading cause of death, 
and today in this country, more than 5 million Americans have 
the disease. Our study shows that in the next 20 years, the 
numbers of people with Alzheimer's will increase more than 50 
percent.
    Without some basic action in this country, ultimately, 1 in 
2 people over 80 are going to have this disease, and that is 
too many. We are living longer, and we just can't face that 
kind of personal tragedy and expense.
    Now the disease is devastating for those who are afflicted, 
but their friends and family and caregivers as well. That is 
the problem. The costs of care are very substantial because at 
some point the person with the disease can't take care of 
himself or herself, and it typically takes at least two to 
provide round-the-clock care.
    Our Nation has no real plan for a Federal effort to find a 
solution or to help manage the costs, and we need to do both. 
That kind of a solution is urgently needed. So we submit some 
specific recommendations.
    First, I think we need a major prevention initiative to be 
developed with the goal of preventing the onset of Alzheimer's 
in most people. Based on the research that we heard about and 
the testimony that we heard, we think that prevention can be 
achieved within a reasonable time if it has the proper funding 
and support.
    We are on the edge of being able to do that, but we really 
must get some funding and support. It requires both public-
private joint ventures to do this with the scientific 
community, and it requires major data sharing, which is not 
happening at present.
    Second, we need to reimburse the providers of health and 
social services to Alzheimer's patients for perhaps about 20 
percent of those services. I don't think we can possibly do it 
all. But as you know, we work today under a fee-for-service 
reimbursement through Medicare and Medicaid for specific 
services. Alzheimer's patients don't need so much a specific 
``I have a cut, you need to sew it up'' sort of service. It is 
a broader kind of a service of how do we provide more 
generalized care?
    So, third, I think we need to start an Alzheimer's 
solutions project office within our Federal Government, find a 
focal point for this. That office can direct and implement the 
various care and improvement initiatives that Congress agrees 
should be undertaken. I am sure that within Congress itself, 
you can have a joint Committee or Subcommittee to supervise 
this.
    Now our Nation has undertaken other specific initiatives 
and for particular diseases, not to mention going to the Moon. 
When we undertake as a Nation to do something like that, these 
have been some of our major successes as a Nation and our 
greatest contributions to the world. So developing better care 
for those afflicted by Alzheimer's and preventing and curing 
the disease are things that can, should, and, I think, must be 
undertaken.
    We urge you to help with this very critical endeavor, and 
without the support of Congress, I think the costs of care are 
going to grow astronomically and will hinder our efforts to 
reduce our growing Federal deficit if we can't help with this.
    Thank you very much for listening and for holding this 
hearing today.
    Thank you, Mr. Chairman. [Applause.]
    [The prepared statement of Justice O'Connor follows:]

    [GRAPHIC] [TIFF OMITTED] 51546.001
    
    [GRAPHIC] [TIFF OMITTED] 51546.002
    
    The Chairman. Thank you very much.
    Speaker Gingrich.

  STATEMENT OF HONORABLE NEWT GINGRICH, FORMER SPEAKER OF THE 
 HOUSE OF REPRESENTATIVES, CO-CHAIR, ALZHEIMER'S STUDY GROUP, 
                         WASHINGTON, DC

    Mr. Gingrich. Thank you very much for hosting us, and I 
want to thank you again for last year having hosted us, had 
been in May 2008.
    I also want to thank Senator Collins because she and 
Senator Mikulski and Senator Burr and then-Senator Clinton, on 
July 11, 2007, actually helped us launch this entire project, 
which has now been underway for almost a year and a half.
    On the Alzheimer's Study Group, Senator Kerrey and I have 
been very lucky to have very strong support. In addition to 
Justice O'Connor today, from our group, Meryl Comer, James 
Runde, and Dr. David Satcher are here, and Dr. Mark McClellan. 
So it was a very powerful group that really worked very hard.
    I specifically want to thank Rob Egge, who was the 
Executive Director, and George and Trish Vradenburg. The 
Vradenburg Foundation, in many ways, conceptualized the study 
group. Harry Johns and the Alzheimer's Association has been 
tremendous in supporting it.
    I want to thank the audience for being here today because I 
think they help drive home the human side of what we are 
talking about and the degree to which they have personal 
awareness and personal involvement with Alzheimer's.
    I really want to start by pointing out that as we reached 
out very deliberately to neuroscientists and to try to develop 
an understanding of what was available, that part of what you 
have to take--and this is a little bit to pick up on what 
Senator Graham said--is the scale of what we are dealing with.
    Every 70 seconds, someone in America develops Alzheimer's 
disease. By 2050, someone will develop Alzheimer's every 33 
seconds. 5.3 million Americans currently suffer from 
Alzheimer's, 1 in 8 Americans over 65, and almost 1 in 2 over 
85.
    Ten million baby boomers will develop the disease. It is a 
family disease. As Senator Gillibrand pointed out, 9.9 million 
caregivers provide 94 billion hours of uncompensated care per 
year.
    The healthcare costs for people with Alzheimer's disease 
are three times greater than for people with other diseases 
because of the complexity of dealing with someone who has 
dementia. In 2005, Medicare spent $91 billion on beneficiaries 
with Alzheimer's and other dementias and is projected to spend 
$189 billion by 2015.
    Given the present trends, Alzheimer's will cost Medicare 
and Medicaid a projected $19.89 trillion between 2010 and 2050. 
Because people tend to get Alzheimer's later in life, even a 
delay has a significant effect on lowering cost. A 5-year delay 
of onset would save $8.51 trillion over the same period. I want 
to repeat that number--$8.51 trillion by simply getting a 5-
year delay.
    The CDC, the Centers for Disease Control, lists Alzheimer's 
disease as the sixth leading cause of death. Today, there is no 
cure, no disease-modifying treatment, and no prevention. There 
is no single breakthrough that would do more to lower the cost 
of entitlements than preventing the onset of Alzheimer's 
disease.
    In the early 1950's, more than 50,000 Americans were 
infected with polio each year. Within years of the licensing of 
the Salk vaccine in 1955, polio was effectively eliminated in 
the United States. An Alzheimer's preventive would dramatically 
overshadow even that great scientific victory.
    More importantly, there is no single breakthrough that 
would do more to improve the quality of life of older Americans 
and more to relieve their families and loved ones of pain and 
worry than to develop a breakthrough in treating or delaying 
the onset.
    We have 16 specific recommendations, and for time reasons, 
I ask for permission for my entire presentation to be put in 
the record.
    The Chairman. Without objection.
    Mr. Gingrich. But I want to focus--and Justice O'Connor has 
already emphasized several key points. I want to focus in on a 
fundamental change in budget and management of science.
    We are going to get 4 to 7 times as much new science in the 
next 25 years. That science is going to change everything, from 
energy to the environment to national security to jobs to 
health. The specific example of Alzheimer's, we have 
approximately $20 trillion on the table that we are going to 
spend between now and 2050.
    If you took a business approach, and you said, ``What would 
my return on investment be if I could get a breakthrough?'' You 
would make a very substantial investment up front. You wouldn't 
start with an annual budget and say, ``This is all I can 
afford,'' because you are already going to spend $20 trillion.
    So, our proposal in part is to take this kind of research 
off budget, to create a sinking fund, to pay for it with 
specific bonds that are Alzheimer's related bonds, and we have 
three Nobel Prize winners and 125 neuroscientists in the 
appendix who believe we can get the breakthrough by 2020.
    Let us say they are off by 5 years, and it is 2025. People 
in this room can measure their own age and decide whether or 
not that relates to them. But I will tell you, for your 
children and grandchildren, this breakthrough would be 
unbelievably important. For the budget, it would be 
unbelievably important.
    I think if you were to call together the leading 
neuroscientists and say what could you profitably use to 
maximize the rate of discovery, to maximize the chances of 
breakthrough, and then have it as part of the budget agreement 
that if we do get a breakthrough, the first cut of the savings 
goes to pay off the bonds that were used to launch the 
research.
    You would have a closed system in which you would save 
trillions of dollars in out-year costs. You would get the 
breakthrough years faster, saving many human lives and much 
suffering, and you would have accelerated our ability to invest 
in science the way we should.
    The last point I would make about this is that--and this is 
very controversial, even on our own panel. So let me be clear 
about that. I believe, and most of the neuroscientists we have 
talked with believe, that the project direction model used for 
the Human Genome Project is a much more powerful organizing 
system for this kind of research than the traditional NIH 
individual researcher, application, peer review, annual budget, 
small building blocks.
    That is very controversial, but I think it is worth this 
Committee and others hearing from neuroscientists about why 
that approach would be more powerful. If combined with Justice 
O'Connor's model of a public-private partnership, we believe it 
is realistic that sometime in the 2020 or 2025 range, we would 
have had fundamental and decisive breakthroughs and in the 
process not only affected Alzheimer's, but affected every brain 
science-related activity, including Parkinson's, including 
epilepsy, including mental health, such as schizophrenia.
    So we think this is a very major zone to fundamentally 
rethink the budget act and to fundamentally rethink how we 
organize science.
    I appreciate very much the chance to share this with you. 
[Applause.]
    The Chairman. Thank you, Speaker Gingrich.
    [The prepared statement of Mr. Gingrich follows:]
    [GRAPHIC] [TIFF OMITTED] 51546.003
    
    [GRAPHIC] [TIFF OMITTED] 51546.004
    
    [GRAPHIC] [TIFF OMITTED] 51546.005
    
    [GRAPHIC] [TIFF OMITTED] 51546.006
    
    [GRAPHIC] [TIFF OMITTED] 51546.007
    
    [GRAPHIC] [TIFF OMITTED] 51546.008
    
    [GRAPHIC] [TIFF OMITTED] 51546.009
    
    [GRAPHIC] [TIFF OMITTED] 51546.010
    
    Senator Bob Kerrey.

 STATEMENT OF HONORABLE BOB KERREY, FORMER SENATOR, PRESIDENT, 
THE NEW SCHOOL, CO-CHAIR, ALZHEIMER'S STUDY GROUP, WASHINGTON, 
                               DC

    Senator Kerrey. Mr. Chairman and members of the Committee, 
I would like, first of all, just to ask that my full statement 
be included in the record.
    The Chairman. Without objection.
    Senator Kerrey. Trying to build on what both Justice 
O'Connor and Speaker Gingrich has said, there is a case here to 
change the way we approach Alzheimer's disease, and it is a 
fairly simple case that it is a different kind of disease.
    I mean, first of all, it is not the normal process of 
aging. It is a disease. But it is a disease unlike most others 
that produces, at some point, dependency--at some point, 
complete dependency. There is real cost attached to that 
dependency, both to the family, but also public costs, which is 
what Speaker Gingrich has been talking about.
    There are real implications as our own population not just 
ages, but as we survive longer. So, there is a demographic 
issue here that is real. There is a social issue, and there is 
a cost issue. There is a case here to treat Alzheimer's 
differently.
    I share Speaker Gingrich's evaluation of this, and I 
actually would slightly disagree with him and maybe 
substantially disagree with him. I don't think this is that 
controversial. You have differences of opinion on whether or 
not it ought to be project based, but I think the compelling 
argument is that it should be project based.
    You can call before this Committee others who will disagree 
with that, but you have to make a decision. Because if you 
believe it is project based, then you have to create an entity 
inside the executive branch that can organize and direct that 
project, that gets the resources necessary to be able to pull 
people together.
    Because if all it is is just another office of the 
Government without any funds attached, attached in a multi-year 
fashion, the way Speaker Gingrich was implying, you are simply 
not going to be able to get it done. It has to have resources. 
You have to believe that there is real savings and that it can 
be done.
    If you believe it is project based, I am quite enthusiastic 
that the recommendations that we are making in this report will 
produce real results--that it will reduce suffering, that it 
will, at the very least, postpone the onset of Alzheimer's, and 
I think there is real promise, in fact, from the scientists 
that we have talked to that you could eliminate Alzheimer's as 
one of the things that you fear when you think about growing 
old.
    So, Mr. Chairman and members of the Committee, I hope that 
this hearing will produce results. I very much appreciate your 
attention to it, your interest in it, your interest prior to 
this report. I am very hopeful that the recommendations that we 
make will become a part of a major project to eliminate this 
disease.
    Thank you. [Applause.]
    [The prepared statement of Senator Kerrey follows:]
    [GRAPHIC] [TIFF OMITTED] 51546.011
    
    [GRAPHIC] [TIFF OMITTED] 51546.012
    
    [GRAPHIC] [TIFF OMITTED] 51546.013
    
    [GRAPHIC] [TIFF OMITTED] 51546.014
    
    [GRAPHIC] [TIFF OMITTED] 51546.015
    
    [GRAPHIC] [TIFF OMITTED] 51546.016
    
    [GRAPHIC] [TIFF OMITTED] 51546.017
    
    [GRAPHIC] [TIFF OMITTED] 51546.018
    
    The Chairman. Thank you very much, Senator Kerrey.
    Ms. Shriver.

STATEMENT OF MARIA SHRIVER, FIRST LADY OF CALIFORNIA, CAREGIVER 
                  AND ADVOCATE, SACRAMENTO, CA

    Ms. Shriver. Thank you.
    I would like to thank the Alzheimer's Study Group for their 
incredible service, and I want to thank the Committee for 
asking me to come here today, even though I wish I didn't 
qualify.
    Good morning. I am Maria Shriver, and I am a child of 
Alzheimer's. For many years, my father, Sargent Shriver, would 
come here to the Hill himself to testify before Committees like 
this. He came to get increased funding for his beloved Peace 
Corps and for all the war on poverty programs that he started, 
including Head Start, VISTA, Job Corps, and legal services for 
the poor.
    My dad was legendary for the way he worked this building. 
He knew every Senator and every congressman by name. He knew 
their careers, their interests, their politics, and of course, 
their soft spots. Sargent Shriver was an idealistic, 
intelligent, optimistic public servant--sharp, witty, a walking 
encyclopedia, his mind a beautifully tuned instrument that left 
people in awe.
    That was then. Today, he doesn't even know my name. To be 
honest, that is still really difficult to wrap my own mind 
around, but that is the heartbreak and the reality of 
Alzheimer's. A reality that is terrifying and incomprehensible.
    When my father was first diagnosed in 2003, everybody in my 
family felt confused, powerless, and alone. There was little 
information and even less hope. My mother, my four brothers, 
and I felt we were entering a world that was dark, depressing, 
and scary. When people talked about Alzheimer's, they whispered 
about it. It was a diagnosis shrouded in shame.
    We struggled, like so many families here, with learning 
about medication and care giving, with issues of our father's 
diminishing independence, trying to explain to him why he could 
no longer drive, trying to tell him why he could no longer give 
speeches about public service.
    I know that when many people look at Alzheimer's families 
from the outside, they see dependent, childlike parents now 
cared for by their offspring or their loved ones, and it seems 
so often that the roles are simply reversed. That is not so.
    The truth is, no matter what our age, we all feel like 
children. No matter who you are, what you have accomplished, 
what your financial situation is, when you are dealing with a 
parent with Alzheimer's, you, yourself, feel helpless.
    The parent can't work. They can't live alone and is totally 
dependent like a toddler. As the disease unfolds, you have no 
idea what to expect. As a doctor once said to me, once you have 
seen one case of Alzheimer's, you have seen one case of 
Alzheimer's.
    In fact, back then, there was so little information about 
the disease that I wrote a book myself, called ``What Is 
Happening To Grandpa?'' At the time, I wrote it to help my 
children understand what was happening to their grandfather. 
But in truth, I actually wrote it to explain it to myself.
    When I wanted to turn it into a television special, because 
I was a working journalist, nobody wanted to do it because they 
said it wasn't a hip enough, big enough disease.
    Then almost out of nowhere came what I call the Alzheimer's 
turning point, when the New York Times reported that the number 
of people with Alzheimer's was ballooning, rising by 10 percent 
in just the previous 5 years. They reported, and you have heard 
some of the figures this morning, that fully 13 percent of 
Americans had Alzheimer's. That meant that 1 in 8 people over 
the age of 65, and they said that unless a cure was found, the 
numbers would balloon by 2050.
    That was, I believe, the wakeup call that baby boomers 
needed. After all, we are the generation who believed our brain 
span should match our lifespan. But now we are confronted with 
an epidemic, an epidemic that is not just happening to ``those 
people.'' It is an epidemic that is happening to us, and we are 
scared to death.
    All of a sudden, it seemed to me that people really started 
paying attention to Alzheimer's. It became front-page news. HBO 
came to me at the time and said, ``We want to do an in-depth 
look at this disease, and we want you to be involved.'' So 
starting on Mother's Day, May 10, HBO will air the most 
comprehensive television event ever about Alzheimer's disease. 
It is called ``The Alzheimer's Project.''
    There will be four broadcasts and a companion book focusing 
on the cutting-edge science, the issues of care giving, and how 
one lives with the disease and how it affects children and 
grandchildren. I am excited to be involved in this project with 
HBO's Sheila Nevins because I truly believe that it will change 
the way we look at Alzheimer's, and I think it is time for this 
attention.
    Because fully a third of Americans, and I know many of you, 
have direct relationship to this disease. Believe it or not, 
there is about half a million kids, close to half a million 
kids actually babysitting grandparents at home, more than 
perhaps are actually babysitting little kids.
    Most of the unpaid care giving in this country is being 
done by women. But luckily, that is also changing. 
Increasingly, men are stepping up to the plate. Which brings me 
back to my own brothers, one of whom, Timothy, is here today.
    I am in awe of what they and so many of these families do. 
They take my dad out to Orioles games. They sit and joke with 
him. They talk ``guy talk'' to him. They take him to their 
children's games and their piano recitals.
    Or former Peace Corps volunteers and OEO members will come 
up to him, knowing he has Alzheimer's, and still talk to him 
and tell him stories. It doesn't matter that he doesn't know 
who they are. It doesn't matter that he doesn't even remember 
the Peace Corps. What matters is that he is comforted by the 
warmth of human connection. I know that for sure.
    I also know that, all in all, my family is one of the lucky 
ones. We are blessed to be able to keep our dad at home. We are 
blessed to have the resources to pay for patient and loving 
caregivers, two of whom are here with me today, who help us 
take care of my father.
    But millions of others are not as lucky. Many are forced to 
quit jobs to stay home or go through the wrenching process of 
sending a parent away to a facility, feeling judged and 
mortified and ashamed that they can't take care of their loved 
one at home.
    But for so many of the people in this room, the financial, 
emotional, and spiritual costs are way too much to bear. My 
hope is that as the veil is lifted, as information and funds 
are made available, they will understand that they are not 
alone and that there is nothing to be ashamed of, and that 
there is hope out there because we are finally, at long last, 
making Alzheimer's a national issue.
    I believe, and I know many of you share this belief, that 
we have to put Alzheimer's on the front burner because if we 
don't, Alzheimer's will not only devour our memories, it will 
cripple our families, devastate our healthcare system, and 
decimate the legacy of this generation.
    Let me end with my father. At the age of 93, he still goes 
to Mass every day. Believe it or not, he still remembers the 
Hail Mary. But he doesn't remember me, Maria. I would be lying 
if I didn't admit that that still makes me cry.
    But even so, in the past 6 years, I have gone from 
hopelessness to hope. I have hope because things are changing. 
I have seen intergenerational daycare centers where toddlers 
and Alzheimer's patients spend the day together. They eat 
together. They dance together, and they have story time 
together. It is moving.
    I have hope because public hearings like this, high-profile 
work like the Alzheimer's Study Group and the coverage this is 
getting, and I hope the television special will take 
Alzheimer's out of the back room and into all of our living 
rooms.
    Most of all, I hope that this Committee will do the bold 
thing, the courageous thing, and use the Alzheimer's Study 
Group report as a blueprint for the real legislation we need to 
stem the tide of what promises to be a horrific epidemic--the 
disease itself and its impact on our families and the 
healthcare system.
    I know many of you know someone close to you or maybe even 
in your own family who is struggling with this disease. I know 
you have seen the pain and you have watched in the eyes of 
someone who sits powerlessly as their loved one dies on the 
installment plan. That is why I know you will have the courage 
to do the right thing. Make no mistake, I know it will take 
courage to implement some of these bold recommendations.
    But I know for sure that if you do make that major 
commitment to the brilliant scientists like the ones I have met 
in laboratories across this country, they will produce the 
drugs to slow Alzheimer's down and maybe even prevent it.
    So I hope you will get busy right now and do what we have 
to do to spare millions of Americans the future and the pain of 
watching someone they love and feeling powerless. If you do, I 
am convinced, truly convinced that we baby boomers will be the 
generation who gets to tell our grandchildren that, believe it 
or not, there once was a time when there was no cure for 
Alzheimer's.
    Thank you. [Applause.]
    [The prepared statement of Ms. Shriver follows:]
    [GRAPHIC] [TIFF OMITTED] 51546.019
    
    [GRAPHIC] [TIFF OMITTED] 51546.020
    
    [GRAPHIC] [TIFF OMITTED] 51546.021
    
    [GRAPHIC] [TIFF OMITTED] 51546.022
    
    [GRAPHIC] [TIFF OMITTED] 51546.023
    
    [GRAPHIC] [TIFF OMITTED] 51546.024
    
    [GRAPHIC] [TIFF OMITTED] 51546.025
    
    [GRAPHIC] [TIFF OMITTED] 51546.026
    
    The Chairman. Thank you, Ms. Shriver.
    Mr. Butcher.

     STATEMENT OF LARRY BUTCHER, CHAIR, BOARD OF DIRECTORS 
        ALZHEIMER'S COMMUNITY CARE, WEST PALM BEACH, FL

    Mr. Butcher. Thank you, Chairman Kohl.
    The Chairman. Tough act to follow, Mr. Butcher. We will 
give you a lot of leeway. [Laughter.]
    Mr. Butcher. It is a tough act to follow, sir.
    Chairman Kohl, I thank you and Ranking Member Martinez this 
morning and the other members of the Committee, for the 
opportunity to be here.
    My name is Larry Butcher. I live in Stuart, FL. I speak to 
you today as the husband and caregiver of my wife, Jeannette. 
She was diagnosed with Alzheimer's at the young age of 55. 
Since then, she has suffered just about every one of the 
disease's cruelties. She is now bedridden and in the care of 
hospice.
    I also speak today as board chair of Alzheimer's Community 
Care, a remarkable, community-based provider of care and 
support for Alzheimer's patients and their families in Palm 
Beach, Martin, and St. Lucie Counties in Florida. There is 
nothing else around quite like it, and Mary Barnes, Alzheimer's 
Community Care's founding CEO, is the reason why. She is here 
with us today.
    The organization's success has drawn State and national 
attention, including the National Institutes of Health, the 
National Library of Medicine, which piloted an information 
outreach program with us.
    Jeannette and I recently celebrated our 48th anniversary. 
She didn't know it, and she doesn't know me. This vibrant and 
loving woman once thrived on motherhood, family, and our 
community. She was full of life, and our good future was ours 
for the taking.
    If I might, sir, my oldest son from Tampa, FL, happened to 
be in town for other business, and he joined us here in the 
room this morning. I am really pleased with that.
    Once she was afflicted, though, the good judgment I had 
relied upon vanished. She became angry, belligerent, a very 
different person. Erratic and full of rage and resentment, 
Jeannette seemed as much possessed as diseased. I really felt 
like a bystander at a car wreck. Good information was very 
difficult to find. Her doctor gave me very little support. I 
guess he felt that wasn't his job.
    Pieces of my heart broke every day as our future as husband 
and wife dissolved. Eventually, the only emotions we shared 
were depression and fear. Then almost by accident, I heard 
about Alzheimer's Community Care. Jeannette entered one of 
their day programs, and we have been in the embrace of the 
wraparound model of family care ever since.
    Speaker Gingrich's report reads like the operator's manual 
for Alzheimer's Community Care. The study describes what we 
already do. Your care manager nurse is our family nurse 
consultant. An R.N., she is my friend, my advisor, my guide, 
and sometimes my therapist. She is our integrator of 
specialized care, the one person who connects all the dots 
between Jeannette's care, my needs, and the available services. 
She remains a steadfast advocate for our best interests.
    Our nurse consultant pushed me through the door into an 
Alzheimer's support group, where I discovered I was not alone. 
Here, I found the smarts to make some of the hard decisions 
like taking away car keys, protecting her from wandering, and 
tips on daily details of care at home.
    I learned this was a long, hard haul, that I would need all 
the physical and emotional stamina I could muster. They sure 
got my attention when they told me that Alzheimer's caregivers 
are at risk of dying sooner than caregivers of loved ones with 
other killing diseases. I vowed not to be one of them.
    The need for caregivers and support is huge. Experts say 
that in our State of Florida alone, Alzheimer's and related 
disorders afflict more than 800,000 people. There is an 
estimated 107,000 people in our three-county service area. For 
each one, there are 19 others affected. Do the math. The 
numbers are absolutely astounding.
    No entity is prepared to take it all. ACC is but a single 
dim light in a bleak landscape. We have 11 daycare programs 
that are scattered across three counties. We lease neighborhood 
church fellowship halls where the at-home setting, the spirit, 
and the rent is right for our purposes.
    Most caregivers work. So we are open 10 hours a day, Monday 
through Friday. Nurses and nurse assistants staff each site, a 
ratio of about 1 to every 5 patients. With volunteers, the 
ratio drops to 1 in every 3 patients. Our results are 
unmatched. Caregivers live longer. Hospital stays are far less 
than traditional Government- funded models, and the need for 
medications for patients is lessened.
    ACC's model is cost effective, just under $1,500 a month. 
By contrast, conventional institution care pushed $5,000 a 
month or more. We are the most significant stakeholder in our 
service area. Our annual education conference draws 600 
attendees, and they tell us the ripple effect is improving 
dementia care across the region.
    Still, it comes down to people just like Jeannette and me. 
Before we found ACC, we were frightened and full of pain, but 
that has been lessened. Though our destination remains certain 
and unforgiving, we approach the end blessed with lives filled 
with quality, dignity, and love. There is no cure for 
Alzheimer's disease, but we believe we have found the cure for 
despair.
    I want to thank the Committee for allowing ACC's light to 
shine a little bit brighter today. If you decide to see what 
the study group's ideas look like in action, come see for 
yourselves. Alzheimer's Community Care is really where the 
rubber hits the road.
    Thank you. [Applause.]
    [The prepared statement of Mr. Butcher follows:]
    [GRAPHIC] [TIFF OMITTED] 51546.027
    
    [GRAPHIC] [TIFF OMITTED] 51546.028
    
    [GRAPHIC] [TIFF OMITTED] 51546.029
    
    The Chairman. Thank you very much, Mr. Butcher.
    Speaker Gingrich and Senator Kerrey, could you tell us a 
little bit more about the study group, how it has been 
functioning? How many members do you have, and what are your 
most promising recommendations?
    Mr. Gingrich. OK. Well, the actual members of the study 
group are Dr. Christine Cassel, who is the Geriatrician and 
President of the American Board of Internal Medicine; Meryl 
Comer, who is President of the Geoffrey Beene Foundation 
Alzheimer's Initiative; Steve Hyman--Dr. Steve Hyman, provost 
at Harvard University; Henry McCance, who is the Chairman of 
Greylock Partners; Dr. Mark McClellan, Director of the 
Engelberg Center for Healthcare Reform at Brookings; Justice 
O'Connor; James Runde, who is a Special Advisor at Morgan 
Stanley; Dr. David Satcher, Director of Center of Excellence on 
Health Disparities at Morehouse School of Medicine; and Dr. 
Harold Varmus, President of Memorial Sloan-Kettering Cancer 
Center.
    So that is the core group that met regularly and worked on 
this project together, along with Senator Kerrey and myself as 
the co-chairs. It was funded from a variety of sources. I 
should say that Booz Allen Hamilton and Susan Penfield in 
particular gave us extraordinary support as part of their 
commitment to this. They used their models of how you structure 
large intellectual projects in a way that I think Rob Egge 
would tell you was very helpful.
    The Center for Health Transformation provided the basic 
staff and provided housing for the project. Most of our 
meetings were there. The Vradenburg Foundation, as I said 
earlier, was invaluable. Alzheimer's Association was 
invaluable. The Dwyer family, Pfizer, McCance Foundation, and 
Wyeth were all very, very helpful.
    More than half the funding came from nonprofits, and no 
funders received any particular input or access compared to 
anybody else. Our primary model, again with the guidance from 
Harry Johns and from George Vradenburg, was to reach out to the 
scientific community, and I must say that Justice O'Connor 
arranged for some meetings in Arizona that were very 
impressive, where they have a very substantial State-level 
commitment in research.
    We were trying to find whether or not you could create a 
common understanding of the potential for a breakthrough, and 
then, second, led by Meryl Comer and others, we were looking at 
what can you do to dramatically improve the way in which 
Alzheimer's in the interim is dealt with by the Government and 
dealt with by the private sector.
    I think both the testimony of Larry Butcher and of Maria 
Shriver gave you some sense. We both need improvements in the 
short run, and then we need breakthroughs in the long run to 
change it. That was our focus, but Senator Kerrey may want to 
add to that.
    Senator Kerrey. Mr. Chairman, the report has a number of 
recommendations. I would actually focus on almost two sides of 
it, and again, to repeat, you have to believe that there is a 
case here, that this disease is different. It is a different 
kind of disease, that the implications are different than other 
diseases.
    You do have to believe that, at the very least, the onset 
can be delayed and connected on such that a real savings occur 
on the public side if you accomplish that objective.
    I happen to believe that it could be prevented, that a 
project that had that as an objective could, over a relatively 
short period of time, prevent the onset of the disease itself. 
But you have to have that underlying belief. Otherwise, it is 
very difficult to get anywhere with it.
    I happen to have that belief. With that, I would 
respectfully say to the Committee, focus on two sides of the 
problem. One is the prevention effort itself, and the other is 
the care. So on the prevention side, we are recommending the 
creation of a projection office with a CEO and resources.
    I will leave it to you to decide where it belongs and how 
to make certain that the overhead is as low as possible, that 
the incentives are there to create the public-private 
partnerships, that the incentives are there to bring other 
areas of the Government, whether it is NIH or NSF or other 
entities, bring them into it as well.
    But unless it has not just authority, but funding, it is 
going to be exceptionally difficult to get the job done. There 
are a number of things beyond that that we are recommending. 
There is a need to clarify and accelerate the development 
pathway for preventive and risk-reducing strategies. There is a 
need to expand the pool of volunteers that are willing to be a 
part of these therapeutic tests.
    There is a need to encourage very rapid learning, and we 
are recommending the linking of databases as well as the 
linking of researchers in this effort. So there are a number of 
things on the research side that we are recommending that we 
think will both increase the chances that the onset is delayed 
or increase the chances that prevention itself is ultimately 
achieved.
    On the care side, Mr. Chairman, you heard Justice O'Connor 
make this point. Unfortunately, under the Medicare and Medicaid 
system, but primarily Medicare we are talking about here, the 
reimbursement is done on a fee-for-service basis. What that 
means is there is an incentive to oftentimes do the thing that 
the patient doesn't need.
    Lots of individual services, the higher your income--the 
more visits you make, the higher your income. The less amount 
of time you spend with a patient, more likely it is that your 
income is going to be higher if you are the provider, whereas, 
oftentimes, what the patient needs is just the opposite--a 
longer amount of time on task.
    What Larry Butcher is describing is exactly what we 
envision with our recommendations, and specifically, what you 
could do is ask CMS to do some pilots. To first consult with 
the community to find out how they measure quality and then try 
to get reimbursements out there that achieve that. Do a few 
pilots, and where the pilots work, then aggressively implement 
where the success occurs.
    The Chairman. Thank you so much.
    Senator Martinez.
    Senator Martinez. Mr. Chairman, thank you. Thank you, sir.
    You have spoken about the disease being different, and as 
someone who is fairly new to understanding this, how do you 
mean it is different, and what are the implications of that 
difference as it relates to policy?
    Senator Kerrey. The three differences, actually two 
differences of the disease and the other one is just a 
demographic fact. We are all getting--we are living longer.
    So the two big differences are it leads to dependency, near 
total dependency and significant dependency. It is not just I 
have lost one activity of daily living. I have to be 
supervised. I need somebody providing direct care. It is 100 
percent.
    In most other diseases, that isn't the case. You have 
limitations. When you are going through treatment, you have 
limitations oftentimes as a consequence of what the disease is 
doing to your body. It doesn't produce that certainty of 
dependency.
    The dependency is connected to the public programs that we 
have in place, Medicare and Medicaid. The cost of providing the 
dependent support, even when it is done incorrectly, as I think 
as the current rules of Medicare provide oftentimes incorrect 
kinds of reimbursement. So that is the first substantial 
difference, it seems to me.
    The second is though it is not a normal process of aging, 
there is a correlation. Nearly half of everybody over the age 
of 80 will get this disease. So that correlation with the third 
one, which is the demographic, which is we are all getting--we 
are living longer, creates, I think, a different set of 
circumstances.
    But again, you have got to believe, and I do, when you 
listen to the scientific community that if we organized 
ourselves differently that, at the very least, we could prevent 
the onset. What Speaker Gingrich said earlier is very important 
as you are making this case. You can produce almost half the 
savings just by delaying the onset 5 years. There is very 
little dissent on the question of whether or not that can be 
accomplished.
    Senator Martinez. What would be the key--please.
    Ms. Shriver. Could I just add something? When you talk 
about differences, I think when you talk about cancer and 
diabetes and many other diseases that come before you, there 
are survivors. There are--with Alzheimer's, there are no 
survivors. There is nobody walking around in remission. There 
is nobody who gets a diagnosis and then goes back to work and 
thrives.
    Alzheimer's not only affects the person who is diagnosed, 
and very often there are people who are diagnosed well before 
they are 80. They are in their 60's, many of whom are here 
today, in their 70's. They not only have to quit their job. 
Their children have to quit their jobs to take care of them, 
the loss of income.
    There is no knowledge about how to take care of them. The 
entire family is totally involved in this disease. It is like 
everybody has it. So it is completely different. You don't 
even--at these marches, you don't see survivors walking around. 
I think that is the big difference.
    When Senator Collins was talking about tax breaks for 
caregivers, I think if you talk to all the people here or many 
of the people in this country who are caregivers, that is 
welcome news. But everybody will talk to you that they do 
believe that funding of the research, streamlining the process 
and funding of these scientists is the only answer because it 
is not what we eat. We are not going to be able to do enough 
crossword puzzles.
    People who get this disease, like my father was one of the 
smartest human beings on the planet. So we don't even know what 
causes it, what we can eat to prevent it. When someone gets it 
in your family, the whole family starts going this way.
    Senator Martinez. There are health disparities in our 
country, and I know one of the members of the commission 
apparently has expertise in this area. I didn't see anything in 
the report relating to disparities by ethnicity or race. Is 
there anything you can share with us about any findings along 
those lines?
    Mr. Gingrich. I think that we made a conscious decision--
and Dr. Satcher may want to comment or may want to supply more 
material later. Our commitment is that if we can find a way to 
have the breakthrough, that it ought to be a breakthrough for 
100 percent of all Americans.
    I think the impact of this disease today, partly because of 
the difference in how many people live to certain ages, I don't 
think you have the same pattern of disparity. This is a disease 
we, frankly, don't understand why it hits people the way it 
does, and it seems to hit people across the board of all ethnic 
backgrounds.
    I think that our goal is to find a breakthrough in such a 
way that you would apply that breakthrough to everybody across 
the whole country, and I don't know any other way to approach 
it.
    Senator Martinez. Mr. Butcher, I just wanted to ask if 
there was anything you can share with us about what is 
available in the way of services that you have found 
particularly helpful, valuable? Then the opposite of that, 
which is what would you say is the most needed service that is 
not available?
    Mr. Butcher. Thank you, Senator Martinez.
    I think the idea of a family nurse consultant or the nurse 
care manager is probably one of the most effective things that 
we can do. It seems that when you go to the doctor and you get 
a diagnosis, the major problem that most of the physicians 
have, neurologists and so on, the caregiver is going to ask, 
``OK, now what do I do?'' Many times, that doctor is going to 
say, ``I don't know.'' Because it has been mentioned here, 
there is no effective treatment. The disease process may be 
from 2 to 20 years. Many of those people in the middle stages 
of the disease are going to require someone to be with them 100 
percent of the time.
    I had the experience in the moderate portion of my wife's 
disease where she would go to the freezer and take something 
out of the freezer and take it in and put it in her lingerie 
drawer. I better be watching, or I am going to have a problem 
in the house.
    The wandering of those patients. They require someone with 
them 100 percent of the time, and that is unlike many other 
diseases. If we look at heart disease, if you are diagnosed 
with heart disease, there is a protocol that you go into, and 
the doctors are going to send you into that protocol.
    If you have cancer, there is a protocol that you go into, 
and the doctors are going to send you into that protocol. As 
was mentioned, there are some cures out of that. There are 
people walking around surviving that. With Alzheimer's disease, 
there is no protocol. There is no pattern.
    So what we are looking at is the only thing that we know 
how to do in our area right now is provide care for the patient 
as much as we can through the family nurse consultant and also 
give the caregiver the support that we can through the support 
groups, through advice where the resources are.
    I think that is the positive and the lack of those services 
is the negative.
    Senator Martinez. Thanks.
    The Chairman. Thank you very much, Senator Martinez.
    Senator McCaskill.
    Senator McCaskill. Thank you, Mr. Chairman.
    I would like to try to focus on some of the pragmatic 
recommendations, the challenges pragmatically with some of the 
recommendations that you have made. There are some bold 
recommendations here. I think creating a joint Committee with 
unique authorizing and appropriating authority. I mean, the 
building is shaking with those words being said out loud, and I 
know that both the Speaker and Senator Kerrey appreciate how 
bold that particular recommendation is in the reality of 
Congress and how it operates.
    I would like to talk about the money. In the 
recommendation, you talk about a logical upper bound for an 
investment budget. What is that? In terms of the scientific 
community being able to swallow in a way that is efficient and 
effective, what is the upper bound of investment that would be 
necessary if we were going to do a cost-effective approach by 
realizing that what we invest now is going to save big-time 
public dollars 10, 20, 30 years down the line?
    Mr. Gingrich. Let me take a first stab at it, and let me 
say--and Senator Kerrey can either dissociate himself if he 
wants. One of the reasons that he and I wanted to put in the 
joint Committee idea is to raise tentatively the notion with 
our former colleagues that the Congress is in as deep a need to 
rethink how it operates as the executive branch, and it is much 
harder because the Congress would have to operate on itself.
    It is quite cheerful about reorganizing the executive 
branch. Much harder to get the Congress to rethink itself. I 
think we both thought this was a legitimate opportunity to just 
gently raise that notion as a general principle.
    What I would encourage you to do--and we have not done this 
yet. But what I would encourage you to do is to actually ask 
the scientific community to develop a strategic architecture 
for research in the neurosciences and in particular in 
Alzheimer's.
    The reason I suggest that is that if you look at how the 
one group that does this pretty well are the astronomers 
because astronomy is such a very expensive system that they 
actually get together on a regular basis and talk about what 
should be the roadmap for astronomy because they know there are 
going to be very big, very expensive projects. They have huge 
intramural fights over what should you focus on.
    Our proposition is slightly different than that. I would 
argue that this is much more like the World War II use of 
science. We made enormous strides in 4 years. The entire war 
for us is 3 years and 8 months. The speed with which we 
developed, for example, at the radiation labs at MIT or in the 
Manhattan Project or in a variety of other places, we really 
moved ideas, and we really moved science very fast.
    Because we didn't say to the scientists, ``Here is your 
annual budget.'' We said to the scientists, ``Tell us what you 
are trying to achieve. Tell us the resources you need to get it 
done. Now go do it.''
    I would suggest if we went out--and particularly because if 
you really want to build a momentum of research, you are 
talking about graduate students. You are talking about people 
who decide this is their career. So annual budgeting is a 
terrible way to do science because it sends exactly the wrong 
signals.
    So, I would urge you to actually challenge the scientific 
community to come back with a science-led budgeting proposal, 
which would be very daring and very different. Then 
particularly, I would urge you to appeal to scientists under 
40. It is quite clear, if you read Kuhn's ``The Structure of 
Scientific Revolutions,'' that very often the next generation 
of scientists--and this is part of the challenge of peer-
reviewed application is that the very people most likely to 
have bold, breakout ideas are the least likely to get through a 
peer review process.
    You can see this, for example, with Einstein, who clearly--
who himself said if he had ever been on a faculty, he never 
would have come up with relativity because it would have been 
socially so unacceptable. Only the fact that he couldn't get a 
job as a teacher and had to work as a clerk at the Patent 
Office gave him the freedom to actually think up one of the two 
greatest revolutions in physics in the 20th century.
    So what I would ask you to do is you all have the status, 
you could literally ask--and we would be glad to help organize 
it--for a group of scientists to come in as a panel and present 
you with a very bold proposal for how one might finance and 
structure science.
    Senator McCaskill. So, basically, what you are saying is 
the NIH model is not going to cut it as it relates to 
researcher based, as opposed to, ``Here is the problem. What do 
you need? Go.''
    Mr. Gingrich. Yes, we are saying two things. The first is 
you ought to measure the amount of money to be spent on 
Alzheimer's research against the $20 trillion you are going to 
spend. Therefore, you would spend vastly more than you are 
spending right now.
    The second is that you ought to do it in a directed way 
with a multi-year plan because you want to build the momentum, 
which is antithetical to the NIH current model.
    Senator Kerrey. I will attempt to get my talk button on and 
add simultaneously two things. One is that the recommendation 
for a joint authorizing appropriation Committee actually was a 
bit connected, more than a bit, was connected to the experience 
of the 9/11 Commission, where what we saw was very difficult 
oversight process, to put it in gentle terms, if not a 
dysfunctional oversight process.
    So I appreciate how difficult it would be to vote on 
something like that, but I felt and Speaker Gingrich agreed 
that changing that oversight process is a very important thing 
to do. For those few brave souls in the Congress willing to be 
advocates of it, they need some outside validators who are 
willing to validate that that is an essential part because 
there isn't a silver bullet here. There isn't one thing that 
you can do in this congressional session that is going to solve 
the problem.
    It is going to require the kind of oversight that we are 
seeing here today, where there is good attendance at the 
meeting, there is a lot of people in the room. There is a lot 
of attention being done to it, but this Committee doesn't have 
the kinds of authority that it needs, frankly, it seems to me.
    So I will just leave that one out there because it is not a 
small recommendation. I know it is a difficult recommendation 
to give to Congress, but I think it would provide tremendous 
change not just for the way we would analyze Alzheimer's, but 
in many other areas as well.
    Secondly, spend some time looking at the difference between 
a project model, which is what we are recommending, and a 
traditional NIH or NSF or other model, where you go in and try 
to get a peer-reviewed grant approved. A project model means 
you have got to have a project director with authority and 
resources to manage that project, as we did with the Genome 
Project.
    There is some controversy on that, but in my view, it is 
just a difference of opinion. You will have a number of people 
who will say you shouldn't do it that way, and that is up to 
you. You have got to make that decision. I don't know how you 
get from where we are to where we could be, let alone where we 
ought to be, unless you organize it as a project-based effort.
    Thank you.
    Senator McCaskill. Thank you.
    Thank you, Mr. Chairman.
    The Chairman. Thank you very much. [Applause.]
    Senator Collins.
    Senator Collins. Thank you. Thank you, Mr. Chairman.
    Speaker Gingrich, just yesterday I met with a group of 
neurologists from Maine, and they talked to me about the need 
to have a patient-centered reimbursement system under 
healthcare rather than a procedure-centered system. Justice 
O'Connor, in her testimony, made exactly that point that 
Alzheimer's patients don't need a lot of procedures, but they 
need time with their healthcare providers. They need 
counseling. They need advice, as do their family members.
    Senator Kerrey also referred to a recommendation in this 
area. It is my understanding that one of the major 
recommendations that the study group has come up with is the 
need to develop what you are referring to as ``value-based 
payments.'' That sounds very similar to what the neurologists 
were talking to me about patient-centered care rather than 
procedure-centered care.
    Mr. Speaker, could either you or Senator Kerrey or Justice 
O'Connor expand on what you envision when it comes to value-
based payments?
    Senator Kerrey. Well, first of all, I would recommend that 
if you have an interest in this to call Dr. McClellan up at 
some point to have him talk you through this because he started 
doing this when he was the director of CMS.
    What it requires is either you directing CMS to do it or 
CMS working with you to get it set up, but it requires pilots. 
The pilot begins with a conversation to assess what are the 
quality measures? How do you measure quality?
    Then you set the pilot up based upon reimbursing for 
quality rather than reimbursing for procedures or visits. As I 
said, the current fee-for-service not just in this areas, but 
in lots of other areas as well, you have got a problem in that 
the system tends to reimburse for care that is different than 
what the individual patient actually wants.
    So I would talk to Dr. McClellan about it because he has a 
lot of experience in this area, and I think it has a tremendous 
amount of opportunity because the community is saying this is 
what we want. In many cases, you don't find that. In this case, 
the community is saying identify what the quality issues are 
and reimburse based upon quality.
    There are number of other things, Senator, that I think you 
have got to have if you are going to be able to have an impact 
in this area. I do think electronic medical records are a key 
part of it. It is very difficult to coordinate care unless you 
have it. Very, very difficult, in my view, to get to where you 
need to be unless you have that kind of electronic medical 
system because people are just getting lost.
    I mean, there is a very large number of people with 
Alzheimer's that haven't even been diagnosed with it. There is 
no record of the fact that they have got it, and those where 
the diagnosis occurs, the records are not connected. You don't 
know where they are, and it produces a tremendous problem for 
the research community because they simply are unable to put 
together the groups that they need to try something out, to 
test something to see whether or not an idea, a procedure that 
they have got in mind will work.
    Senator Collins. Thank you.
    Yes, Mr. Speaker?
    Mr. Gingrich. Can I build on that very briefly? First of 
all, I think Larry Butcher's testimony is a key example. If you 
were to go out and find the 10 or 15 best facilities in the 
country and figure out how they organize and how they pay, you 
would find it was radically different than a fee-for-service 
model.
    Again, if you think about it, the morning somebody is 
diagnosed with Alzheimer's, you know you have a lifetime 
contingency. So the idea that you would then try to deal with 
that on a fee-for-service model is utterly irrational. It is a 
hangover from an earlier and simpler era and makes no sense in 
the modern world. So, first of all, I would look at places 
actually doing it.
    Second, Don Fisher at the American Medical Group 
Association, which is the Mayo Clinic and the Cleveland Clinic 
and institutions of that caliber, they have been working for 
three years on new payments models because they decisively 
believe that the fee-for-service model actually produces bad 
medicine and that you don't have people with continuity. You 
don't organize the care not just for Alzheimer's, but across 
the whole system.
    Third, I would look at the work that is being done right 
now at Intermountain Health, where they are very systematically 
looking at very new models, and I would look at the work being 
done at Virginia Mason in Seattle, where they had the ironic 
moment of--they actually send 20 key people at a time to Japan 
to work in the Toyota factories, to learn the Toyota production 
system, to apply it to health.
    They discovered they could take an amazing amount of waste 
out of the system, and they almost went broke because it turned 
out the waste they were taking out was the billing points. They 
literally faced a crisis that if they only did the things that 
were technically right, they couldn't have enough billing 
points to survive as a medical group. Virginia Mason is worth 
your looking at.
    This is a much--first of all, we think that Alzheimer's is 
absolutely unequivocally clear, you should go to a continuum of 
care model based on value and not a fee-service model. But 
second, I would urge you to look at all of Medicare and 
Medicaid in the same pattern and all of Federal employee health 
benefit.
    Because the current way we pay for it guarantees the 
maximum number of short interventions with the minimum amount 
of cohesive, long-term, coordinated care, and that is exactly 
backwards. So, I think you have raised a very important topic.
    Senator Collins. Thank you.
    The Chairman. Thank you. [Applause.]
    They just called a vote on the floor, but we have a little 
bit more time.
    Senator Gillibrand, do you want to take minute or two?
    Senator Gillibrand. Thank you, Mr. Chairman.
    I would like to direct a question to Ms. Shriver and Mr. 
Butcher. From your personal experiences as caregivers, what do 
you think are the most important things that Congress can do to 
help caregivers nationwide? More specifically, how can the 
Federal Government play a larger role in coordinating the care 
that has fallen to the local municipalities and not-for-
profits?
    Ms. Shriver. Well, I think one of the things, as I said, 
Senator Collins talked about, many of the caregivers--we have 
childcare tax credits. Many of the people who are doing this 
full time, we have heard some of the figures that the 
uncompensated care that is going on is in the billions and 
billions of dollars. So that might be something to look at, a 
caregiver's tax credit.
    I think many of the things that have been--I think, No. 1, 
funding the research would give caregivers hope. I think, you 
know, establishing an office, funding it, coordinating, 
streamlining it, and caring. Those are the four things that I 
think would be really fantastic, that all the people in this 
room--and really, this is the number-one disease feared by 
people over 55 in this country. I am sure there is nobody on 
the panel that is 55.
    But 55 years in age up, people are terrified of this 
disease. They want to know that their Government cares about 
it, that it is a priority, that it will be funded, that the 
work will be streamlined and coordinated, and that we will 
solve this problem. We will solve Alzheimer's. We must solve 
Alzheimer's.
    I think, in the meantime, that caregivers feel that there 
are organizations out there where they can go, as Larry can 
talk more about it, for support, that they can get a tax credit 
if they have to lose, change their job, that there is support 
out there, and that they are able to afford to keep their loved 
one at home.
    Mr. Butcher. Thank you.
    I think, as I look at it, I would certainly agree with Ms. 
Shriver on many of the major points. One of the things that I 
look at, when my wife was affected, I was unaware that there 
were any daycare programs out there. It required me to quit my 
job in order to stay home and take care of her. That certainly 
had an impact as we look at the fact that now she has been in 
the nursing home 8\1/2\ years, and the cost of that is 
astronomical.
    One of the things that we might look at is funding or tax 
credits for people being put into daycare. As I mentioned, we 
do have some--many of our caregivers who are working. They are 
able to put their loved one in a care facility during the day. 
They can still maintain their work. They get to work five days 
a week and then they get to work the next two days as a full-
time caregiver.
    We need to look at that model. I would want to look at the 
fact that hospice, Medicare funds hospice. Now hospice is 
continued on sometimes for much, much longer than six months. 
If we could get Medicare funding to help some of the daycare, 
even if it was for one or two days a week, it would give the 
caregiver or the family an opportunity to have a life. I think 
that is extremely important.
    I might add one other thing. When Senator Kerrey was 
talking about the project-type funding and also it was 
mentioned earlier about the Moon landing program. We didn't 
fund that to go half way. We funded it as a project to go all 
the way to the Moon, and that is the way we need to look at 
this disease.
    Thank you. [Applause]
    The Chairman. Thank you. Thank you.
    Senator Gillibrand. May I follow up? I would like to follow 
up with our working group members. You mentioned Medicare, and 
one of the plans of our new President is to focus on healthcare 
reform. So, I would like your thoughts.
    One of the recommendations that I particularly 
appreciated--both Speaker Gingrich and Senator Kerrey, you had 
it in your remarks--was focusing on healthcare IT. That there 
should be a focus on developing a record, an electronic record 
of care for Alzheimer's patients from the early stages through 
their whole life and the development of the disease, but also 
getting a link of data bases and researchers so that you are 
having the ability to track this information so it helps us in 
research.
    I would like you to talk just for a moment about as the 
President reforms healthcare and as we look at what role 
Medicare will play, can you please give your thoughts on some 
suggestions with healthcare IT and other ways to provide better 
delivery of care more cost efficiently?
    Senator Kerrey. Senator, I would just add to what--repeat 
actually what I said earlier. I don't think you can do this 
without electronic health medical records.
    I just don't think, particularly in rural areas, you simply 
can't either develop the kind of quality of care nor can you 
develop a better system of doing the research.
    Because the research community is very, very frustrated at 
their inability to be able to put together their own project. 
So I just don't think you can do it. I think it is a very 
critical piece to be able to get it done.
    In addition, another thing I think about, as you asked a 
very important question about what do you do in rural areas? I 
really would look--I would get CMS and I would spend time with 
CMS and talk to them about this quality care initiative. 
Because I am sure in New York, there are community-based groups 
that are frustrated with this payment system and would benefit, 
I think, from getting some attention paid to reimbursing based 
upon quality.
    Then, last, I would just--you probably already know this, 
but there are some very exciting social networks that are 
already developing on the Internet of community groups that if 
you just follow those networks, it will lead you to community 
leaders like Larry, who are working on this and who are going 
to have a lot better ideas about how to do it right than I do.
    The Chairman. Thank you so much. Go ahead.
    Mr. Gingrich. Could I just add one quick thing?
    The Chairman. Quickly, yes.
    Mr. Gingrich. Because I think that you have touched a very 
important point. I am very supportive of the President's 
initiative in allocating $17 billion for health information 
technology. Candidly, it is something I tried to get the last 
administration to do for 6 years and failed, and I think it is 
absolutely essential.
    However, the great fear I have is that they will now 
internalize health information technology into the Government 
bureaucracies. We have two clear track records in America. When 
you have an agency like the Defense Advanced Research Projects 
Agency, which spends all of its money out of the agency, you 
get a breakthrough like the Internet, the rise of the home 
computer, an amazing number of things happen because you are 
accelerating the access to resources of entrepreneurs.
    When you have the process the Department of Energy tried to 
use in the last few years to create a green coal plant, they so 
internalized it that their 2003 commitment to build a plant by 
2008 is now a 2016 commitment, and I doubt if they will ever 
get it done because it is totally wrapped up in their own 
bureaucracy.
    I would hope that the Senate and the House will look very 
carefully and will urge the President very strongly to 
externalize most of that $17 billion so that it is spent in the 
private sector in a very decentralized way to allow continuous 
evolution because you do not want to get trapped either with 
bureaucratic red tape or get frozen into a technology which 
becomes obsolete within 3 years.
    So it is exactly the right direction. But if they do it 
wrong downtown, they will actually retard the rate at which we 
are able to get to health information technology.
    The Chairman. Thank you.
    Thank you so much, Senator Gillibrand. [Applause.]
    We want to thank our panelists for being here today. You 
have given us a great update on where we are today and where we 
yet need to get to. So we thank you so much for coming here and 
sharing your information and your knowledge with us.
    There is going to be a post hearing press briefing for 
those of you who want to stick around. It will take us just a 
minute or two to set up for it. But we thank you all for being 
here today, and we look forward to continuing to work with you.
    Thank you so much.
    [Whereupon, at 12:10 p.m., the hearing was adjourned.]
                            A P P E N D I X

                              ----------                              


           Prepared Statement of Senator Robert P. Casey, Jr.

    I would like to thank Chairman Kohl for scheduling this 
important hearing on Alzheimer's disease. We first heard from 
some members of the Alzheimer's Study Group last May and I look 
forward to hearing their updates today and their 
recommendations for moving forward. I would also like to 
welcome our distinguished panel of witnesses and thank them for 
taking the time to be here today and share their experiences 
with us.
    Alzheimer's disease is a progressive brain disorder which 
kills brain cells creating difficulties with memory and 
behavior that can impact every aspect of an individual's life. 
It is estimated that as many as 5.3 million people live with 
Alzheimer's today. In Pennsylvania it is projected that by next 
year 280,000 people will have Alzheimer's disease.
    Age is the number one risk factor for Alzheimer's disease. 
As our nation continues to age, and Pennsylvania has one of the 
highest percentages of older citizens in the nation, we can 
expect to see the number of new cases increase every year. 
Indeed the 2009 report of the Alzheimer's Association projects 
that in 2010 there will be nearly 500,000 new cases diagnosed 
every year and by 2050 that number will double to almost one 
million.
    Alzheimer's disease is a fatal disease. It is the sixth 
leading cause of death in the United States and the fifth 
leading cause for people over the age of 65. Between 2000 and 
2006 the number of deaths from Alzheimer's disease increased by 
47.1 percent. To put this in perspective, over the same time 
period deaths from heart disease decreased by 11.5 percent, 
deaths from stroke decreased by 18.1 percent, deaths from 
deaths from breast cancer decreased by 0.6 percent and deaths 
from prostate cancer decreased by 14.3 percent. While many 
other diseases are seeing significant progress, Alzheimer's 
disease is moving backwards. I look forward to hearing what the 
Alzheimer's Study Group suggests we do to reverse this trend.
    Alzheimer's disease impacts many people. Of course anyone 
with the disease is impacted most of all, but family members 
and caregivers share the burden. In 2008, 9.9 million family 
members, friends and neighbors provided unpaid care to 
individuals with Alzheimer's disease. These caregivers do many 
tasks including shopping for groceries, meal preparation, 
managing finances, assisting in activities of daily living such 
as bathing or dressing and helping with medication management. 
In Pennsylvania alone 532,589 unpaid caregivers assisted 
individuals with Alzheimer's and that care was valued at 
$4,114,860,553. Over four billion dollars. That's a huge number 
and that's just in Pennsylvania. Nationally the figure is over 
$94 billion.
    The cost of this caregiving cannot just be measured in 
dollars. The physical and emotional toll on the caregiver has 
an impact as well. Approximately one third of family caregivers 
for individuals with Alzheimer's have symptoms of depression. 
Unpaid caregivers are more likely to report their health as 
fair or poor. One study found that 57 percent of these 
caregivers are employed full or part time and two thirds of 
those said they needed to go in late, leave early or take time 
off because of their caregiving duties. These are also costs 
that must be taken into consideration when we discuss the full 
impact of Alzheimer's disease.
    In closing, Mr. Chairman, let me again thank you for 
bringing us together again on this important issue. I look 
forward to hearing the testimony of the witnesses and the 
recommendations from the Alzheimer's Study Group and to working 
with them and my colleagues.
[GRAPHIC] [TIFF OMITTED] 51546.030

[GRAPHIC] [TIFF OMITTED] 51546.031

[GRAPHIC] [TIFF OMITTED] 51546.032

[GRAPHIC] [TIFF OMITTED] 51546.033

[GRAPHIC] [TIFF OMITTED] 51546.034

[GRAPHIC] [TIFF OMITTED] 51546.035

[GRAPHIC] [TIFF OMITTED] 51546.036

[GRAPHIC] [TIFF OMITTED] 51546.037

[GRAPHIC] [TIFF OMITTED] 51546.038

[GRAPHIC] [TIFF OMITTED] 51546.039

[GRAPHIC] [TIFF OMITTED] 51546.040

[GRAPHIC] [TIFF OMITTED] 51546.041

[GRAPHIC] [TIFF OMITTED] 51546.042

[GRAPHIC] [TIFF OMITTED] 51546.043

[GRAPHIC] [TIFF OMITTED] 51546.044

[GRAPHIC] [TIFF OMITTED] 51546.045

[GRAPHIC] [TIFF OMITTED] 51546.046

[GRAPHIC] [TIFF OMITTED] 51546.047

[GRAPHIC] [TIFF OMITTED] 51546.048

[GRAPHIC] [TIFF OMITTED] 51546.049

[GRAPHIC] [TIFF OMITTED] 51546.050

                                 
