[Senate Hearing 111-880]
[From the U.S. Government Publishing Office]





                                                        S. Hrg. 111-880

UNTIL THERE'S A CURE: HOW TO HELP ALZHEIMER'S PATIENTS AND FAMILIES NOW

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

                                 FORUM

                               before the

                       SPECIAL COMMITTEE ON AGING
                          UNITED STATES SENATE

                     ONE HUNDRED ELEVENTH CONGRESS

                             SECOND SESSION

                               __________

                             WASHINGTON, DC

                               __________

                            DECEMBER 8, 2010

                               __________

                           Serial No. 111-26

         Printed for the use of the Special Committee on Aging


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                       SPECIAL COMMITTEE ON AGING

                     HERB KOHL, Wisconsin, Chairman
RON WYDEN, Oregon                    BOB CORKER, Tennessee
BLANCHE L. LINCOLN, Arkansas         RICHARD SHELBY, Alabama
EVAN BAYH, Indiana                   SUSAN COLLINS, Maine
BILL NELSON, Florida                 GEORGE LeMIEUX, FLORIDA
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                 SAXBY CHAMBLISS, Georgia
KIRSTEN GILLIBRAND, New York
MICHAEL BENNET, Colorado
ARLEN SPECTER, Pennsylvania
AL FRANKEN, Minnesota
                 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, Chairman.................     1
Opening Statement of Senator Bob Corker, Ranking Member..........     2

                                Panel I

Statement of Kathy Greenlee, Assistant Secretary, Administration 
  on Aging, Washington, DC.......................................     3
Statement of Patricia A. Grady, Ph.D., R.N., F.A.A.N., Director, 
  National Institute of Nursing Research, Bethesda, MD...........    15

                                Panel II

Statement of Loren Shook, Chairman, President and CEO, Silverado 
  Senior Living, on Behalf of the Assisted Living Federation of 
  America, Irvine, CA............................................    31
Statement of Laura N. Gitlin, Ph.D., Director, Jefferson Center 
  for Applied Research on Aging and Health, Thomas Jefferson 
  University, Philadelphia, PA...................................    43
Statement of Christine R. Kovach, Ph.D., R.N., F.A.A.N., 
  Professor and Methods Core Director, College of Nursing and 
  Self-Management Science Center, University of Wisconsin-
  Milwaukee, Milwaukee, WI.......................................    59
Statement of Patricia L. McGinnis, Executive Director, California 
  Advocates for Nursing Home Reform, San Francisco, CA...........    72
Statement of Robert Egge, Vice President, Public Policy and 
  Advocacy, Alzheimer's Association, Washington, DC..............    82
Statement of Eric J. Hall, President and CEO, Alzheimer's 
  Foundation of America, New York, NY............................    91

                                APPENDIX

Additional Information from Loren Shook..........................   111
Additional Information from Laura Gitlin, Thomas Jefferson 
  University.....................................................   133
Statement by Speaker Newt Gingrich...............................   154
Testimony from Richard P. Grimes, CEO and President Assisted 
  Living Federation of America...................................   156
Statement submitted by Center for Medicare Advocacy..............   162
Statement from Michael D. Shmerling, of Abe's Garden.............   170
Information from Experience Corpos...............................   172
Information from Linda Nichols...................................   193
Statement from Dr. Louis Mudannayake, MD, CMD....................   201
Information from Geropsychiatric Nursing Collaborative (GPNC)....   202
Information from Mary S. Mittleman, Dr. P.H......................   205

                                 (iii)

  

 
UNTIL THERE'S A CURE: HOW TO HELP ALZHEIMER'S PATIENTS AND FAMILIES NOW

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



                      WEDNESDAY, DECEMBER 8, 2010

                                       U.S. Senate,
                                Special Committee on Aging,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 1 p.m. in room G-
50, Dirksen Senate office Building, Hon. Herb Kohl (Chairman of 
the Committee) presiding.
    Present: Senators Kohl and Corker.

        OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN

    The Chairman. Good afternoon, everybody. We welcome you 
here today. We especially would like to welcome our 
distinguished participants for being here with us. We are lucky 
to have Assistant Secretary Kathy Greenlee and Director 
Patricia Grady, as well as several other experts and advocates. 
We are happy to be hearing from them and we encourage all of 
you here today to participate in our activity.
    Senator Corker and I are holding this forum so that we can 
exchange best ideas about how to provide the best care to the 
5.3 million Americans suffering from Alzheimer's disease. This 
is a huge concern for the much larger number of family members, 
relatives, and friends whose lives are also affected. These 
caregivers do not have the luxury of waiting for a cure. They 
need support now.
    I do feel strongly that we will find a cure and I 
congratulate the Senate HELP Committee for approving the 
National Alzheimer's Project Act last week, which will speed up 
the research process. But until there is a cure, we must focus 
on improving the services for people living with Alzheimer's 
disease.
    Today's forum will highlight the best methods of care that 
can take place in a variety of settings, including nursing 
homes, assisted living facilities, and in the home. The right 
interventions can greatly improve the quality of life for 
people living with Alzheimer's disease as well as their 
families. We believe these best practices should be put to use 
by medical personnel, long-term care staff, and family 
caregivers.
    In a few moments, we will hear from the Administration on 
Aging, the National Institute of Nursing Research, the 
Alzheimer's Association, and the Alzheimer's Foundation of 
America, about how they are spreading the word about models of 
new dementia care. They will talk to us about what type of 
training really works, who needs to be trained, and how this 
can be done in a cost effective manner.
    The good news is that conversations about Alzheimer's care 
are happening all across the country. In my State, the 
Alzheimer's Association of Southeastern Wisconsin recently 
convened a multi-stakeholder task force to take a close look at 
how individuals with moderate and severe dementia who exhibit 
aggression and other challenging behaviors can be treated with 
greater skill and dignity by nursing homes, hospitals, and law 
enforcement.
    The task force was founded following the tragic and 
untimely death of a longtime Milwaukee resident earlier this 
year, who was asked to leave his long-term care residential 
community after developing such challenging behaviors. 
Subsequently, he became even more confused and agitated and was 
arrested and restrained, a traumatic process that contributed 
to the deterioration of his health, and that ultimately 
hastened his death. We should not let these circumstances be 
repeated.
    It is my hope that this forum will serve as a source of 
hope for the Alzheimer's community as we emphasize all the 
things we can do now to improve the quality of life for people 
with Alzheimer's disease and those who love them.
    I will be turning now to Senator Corker for his opening 
comments. I regret I cannot be here with you throughout the 
forum as I have previous important engagement that I must 
attend. Thank you again for being here, and we look forward now 
to Senator Corker's remarks.

                STATEMENT OF SENATOR BOB CORKER

    Senator Corker. I know, because of the many raucous things 
that are happening right now, we both have meetings that start 
at 1.
    But I want to thank Senator Kohl and his staff and our 
staff for helping to organize this forum and certainly 
appreciate all of the many intelligent people who are here to 
talk and to hear from wonderful witnesses and others about how 
we deal with the protocols, how we deal with care, how we deal 
with this issue that affects our society in such a huge way.
    I know that one of the things we talk about a great deal 
are the costs associated with Alzheimer's and what that does to 
our country as a whole. But on the other hand, we know that on 
an individual basis Alzheimer's affects millions of people. As 
a matter of fact, there is not a person in this room, it would 
be my guess, that in some personal way has not been affected. 
My dad passed away a month ago after being diagnosed with 
Alzheimer's 15 years ago, and I have watched the progression 
that takes place. I have watched the stress on the caregiver. I 
have watched all of that, and candidly our family was in a 
situation where financially we were able to ensure that he had 
the best of care. My biggest thought over the course of the 
last few years is how those families who do not have similar 
resources to us deal with this issue. It has to be absolutely 
devastating not just personally but in so many other ways.
    So I thank Senator Kohl and all of you for focusing on this 
issue, and I hope that together as a country we deal with this 
issue that certainly affects us in many ways financially but 
also deal with it in a way that over time in a more humane way 
our society with individuals can deal with it also.
    Thank you very much.
    The Chairman. Thank you.
    Ms. Whitman. Welcome to you all. I am Debra Whitman. I am 
the Staff Director for the Senate Aging Committee. I would like 
to introduce our wonderful first panel.
    We are pleased to welcome Kathy Greenlee, Assistant 
Secretary for the Administration on Aging. Prior to becoming 
Assistant Secretary, Ms. Greenlee served as a State long-term 
care ombudsman and Secretary of Aging for the State of Kansas. 
Ms. Greenlee will highlight the AoA's current efforts to 
implement evidence-based programs of services and training in 
Alzheimer's care.
    Next we will hear from Patricia Grady, Director of the 
National Institute on Nursing Research. Dr. Grady joined NIH in 
1988 where much of her scientific research has been in stroke 
and brain imaging. Dr. Grady will describe the role of research 
and training to improve the quality of care for people with 
Alzheimer's disease and to provide adequate support for their 
caregivers.
    Thank you both.

       STATEMENT OF KATHY GREENLEE, ASSISTANT SECRETARY, 
            ADMINISTRATION ON AGING, WASHINGTON, DC

    Ms. Greenlee. Good afternoon to you all. It is good to see 
you, and great to see such a good turnout. Thank you, Debra, 
for the introduction.
    I would like to acknowledge Senator Corker and Senator Kohl 
for convening this forum. I had a chance to talk briefly with 
Senator Kohl before we started. I last saw him in Milwaukee in 
September. It was warm in Milwaukee then. I hear it is not now. 
Talking about Alzheimer's disease is just one of the many 
things that Senator Kohl focuses on with regard to seniors. As 
the chair of this committee, his knowledge is vast, his 
interest is deep, and we had a wonderful opportunity in 
Milwaukee to talk specifically about the reauthorization of the 
Older Americans Act. Many of the things that I am talking about 
today with regard to Administration on Aging programs are 
funded from that Act, and so I wanted to acknowledge that he 
sees the big picture as well as looking at specific topics that 
are this important such as Alzheimer's.
    There are a few things I want to point out about 
Alzheimer's, and what I would like to focus on specifically are 
the things that we are doing at the Administration on Aging to 
help support home and community-based services for those people 
with dementia, as well as those who care for those.
    Helping older Americans who have Alzheimer's disease and 
related dementias maintain their dignity is central to our 
mission at AoA. Access to appropriate supports is critical in 
understanding and managing these diseases, especially those 
services that allow families to plan in the early stages of the 
disease and those that support family caregivers.
    The Administration on Aging supports embedding dementia 
practice into State long-term services and supports. This 
effort is designed to be responsive and improve the home and 
community-based services that currently exist so that they can 
better support people with Alzheimer`s disease and other 
related dementia. It is important to focus on the fact that we 
currently have a home and community-based service network in 
this country and that we need to embed the practice of paying 
attention to Alzheimer's and other dementias into those current 
systems, as well as to look at new things that we can be doing, 
to help people with Alzheimer's and their caregivers.
    The challenges posed by Alzheimer's disease and related 
dementias for persons with the disease and their families are 
enormous. I know this personally as a granddaughter. I know 
this as the assistant secretary as I meet with members of 
various communities across this country, members and 
individuals who are providing support specifically to 
caregivers.
    AoA works within HHS, with our partner agencies at the 
National Institutes on Aging (NIA) at the National Institutes 
of Health (NIH), with the Centers for Disease Control and 
Prevention (CDC), and with the Agency for Healthcare Research 
and Quality (AHRQ), to determine the universe of interventions 
that are suitable for translation in the community where three-
quarters of the people with dementia live. The interventions 
that AoA funds are those that have been tested in randomized 
controlled trials and found to have positive effects on persons 
with dementia and their families. For example, we have worked 
closely with the NIA to understand and disseminate evidence-
based interventions such as ``Resources for Enhancing 
Alzheimer's Caregiver Health,'' or REACH. I believe you will 
talk about REACH, Patricia, as well in your testimony. This 
intervention is specifically aimed at enabling caregivers to 
cope with the daily, often intense stress they face in 
providing care to their loved ones. AoA and the National 
Institute on Aging have also collaborated in providing 
materials that we can disseminate to all the people in this 
country who are receiving home-delivered meals to provide basic 
education about Alzheimer's, other related dementias, and the 
services that we have available.
    According to recent estimates, between 2.4 million and 5.1 
million Americans have Alzheimer's disease. Unless the disease 
can be effectively treated or prevented, the number of people 
with Alzheimer's disease will increase significantly if the 
current population trend continues. That is because the risk of 
Alzheimer's disease increases with age and the U.S. population 
is aging. The number of people 65 and older is expected to grow 
from 39 million in 2008 to 72 million in 2030, and the number 
of people with Alzheimer's disease doubles for every 5-year 
interval in age beyond the age of 65. According to the 
Alzheimer's Association, at least 10 million baby boomers will 
develop Alzheimer's disease in their remaining lifetimes. That 
is twice as many people as the number estimated to have the 
disease right now. In addition, four million baby boomers will 
develop a related dementia, which poses similar challenges as 
Alzheimer's for people who have related dementias, as well as 
their families and the health and long-term care systems.
    I want to stop and emphasize that point twice. We are 
talking today specifically about Alzheimer's, but the thing 
that we all know, those of us here and those of us who work in 
this area, is that the field of dementia is much broader than 
Alzheimer's. There are other related dementias that may have a 
slightly different disease progression but have the impacts on 
the individual and the community that are very similar to 
Alzheimer's disease. This is something that our partners at the 
Alzheimer's Association understand, as well as the community 
providers. Today we are talking about Alzheimer's and all of 
the other related dementias that impact individuals as they 
age.
    States and the Federal Government are currently engaged in 
major efforts to transform health and long-term services. If 
those efforts are successful, they should also address dementia 
in order to transform the care that we are providing. While 
medical research pursues the cause and treatment of the 
disease, which is critically important for understanding why we 
must talk to clinicians and professionals in the field of 
health, we must also develop better, cost effective ways to 
support and sustain family caregivers and people who have the 
disease right now.
    Leading policymakers are emphasizing prevention and chronic 
disease management as strategies for improving quality and 
controlling costs. AoA, through the administration of the 
``Alzheimer's Disease Supportive Services Program,'' is working 
with the States, communities, and researchers to translate 
proven caregiver support programs into practice at the 
community level. Through this work, we are developing tools to 
make available these programs so again we can embed them into 
the current long-term services system.
    We began this specific emphasis on evidence-based research 
at AoA nearly a decade ago. We have had a focus on evidence-
based research with a number of programs at AoA, and the one 
that I can point to and talk about the most is the work that we 
have done in the field of Alzheimer's. We began by developing 
research materials and evidence-based guidelines for 
physicians. As a result of that effort nearly a decade ago, we 
have physicians nationwide who have adopted our best practices.
    This fall we announced funding to 16 States to field test 
nine evidence-based caregiver interventions with the goal of 
embedding successful translation in State programs and funding 
streams. We are looking at how those interventions can be 
effectively provided through the aging network, and if these 
interventions can be successfully translated to other community 
settings. If they are successful, they will have a significant 
impact on supporting caregivers and their families.
    I would like to give you some examples of the types of 
interventions that we are looking at. One intervention 
currently being translated in six States, California, Florida, 
Georgia, Minnesota, Utah, and Wisconsin, is the ``New York 
University Caregiver Intervention.'' Because this program has 
been tested in a randomized controlled trial, we know that the 
New York University Caregiver Intervention significantly delays 
institutionalization of persons with dementia by providing 
education, support, and counseling to spousal caregivers. The 
average institutional delay for persons with dementia who 
received support from this one program is 557 days. That has a 
significant impact on the health and life of the individual. It 
also has an impact on the cost. If you look at the national 
average nursing home rate of $219 a day, if you can delay 
nursing home admission by 557 days, you have saved someone, 
whether it is private resources or a government program, 
$121,000 for helping one particular person. For each of these 
programs in these six States, we will work to implement and 
prove and test and find out what works.
    We have other types of programs, the ``Savvy Caregiver'' 
program, which are operating in three States. The Savvy 
Caregiver is a different kind of training program that delivers 
2-hour sessions over a 6-week period focusing on helping 
caregivers think about their situation objectively and provides 
them with the knowledge and skills that they need so they can 
manage stress and carry out their lives.
    What we believe is that successful translation should be 
designed to be embedded in systems over time. The caregiver 
translations need to intervene at one point and be successful 
as the disease progresses to both help the individual with the 
disease, as well as the person providing care. We have numerous 
examples of evidence-based practices that we are working to 
embed with our partners.
    I believe that there is a process for doing this work that 
involves partnership with NIA and our other partners where we 
look for promising practices. We find a way to test approaches 
like the examples that I have given so that we know nationally 
what are the best systems.
    We have a good program working in New Mexico that is 
helping to specifically provide assistance to adult day 
providers on what they can do to better support and recognize 
people with Alzheimer's and provide respite services.
    In Minnesota, we are working with the Aging and Disability 
Resource Center to identify opportunities so we can provide 
better education in the community.
    There are a number of things it will take to tackle this 
overwhelming disease and to be able to move forward. As an 
administration, we are very committed to working with our 
partners, to working with those of you here to do something as 
basic as what works, how do we try it, and how do we make sure 
everybody in the Nation who needs the support gets it. This is 
a critically important issue and I would like to again thank 
the committee for talking about Alzheimer's and the related 
dementias today. Thank you very much.
    [The prepared statement of Ms. Greenlee follows:]

[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    
    STATEMENT OF PATRICIA A. GRADY, PH.D., R.N., F.A.A.N., 
 DIRECTOR, NATIONAL INSTITUTE OF NURSING RESEARCH, BETHESDA, MD

    Dr. Grady. Good afternoon. I would also like to add my 
thanks to Senators Kohl and Corker and the committee for their 
interest in this important area.
    I appreciate the opportunity to discuss the research and 
training activities of the National Institute of Nursing 
Research at the NIH for older adults with Alzheimer's disease, 
or AD, and their families.
    I am the Director of NINR, one of the 27 institutes and 
centers at the National Institutes of Health and one of several 
that support research on AD.
    Today I will describe some of the NINR's recent research 
findings and current efforts focused on older adults with AD 
and other dementias and also on improving the quality of life 
for caregivers. I will also stress the importance of supporting 
training opportunities to ensure that the next generation of 
scientists and caregivers have the knowledge and tools to serve 
the needs of our rapidly aging population.
    We have heard that Alzheimer's disease affects up to 5 
million Americans, and with the baby boomers' increased life 
expectancy, this number is expected to increase dramatically in 
the coming years. NIH is dedicated to supporting a broad 
interdisciplinary program of research to answer critical 
questions about what causes AD, how to better diagnosis it, how 
to best treat it, and ultimately how it can be prevented.
    Over the past 20 years, we have significantly increased our 
understanding of the biological and the genetic underpinnings 
of this disease. However, there is currently no way to prevent 
the onset of AD and drug treatments are not very effective in 
delaying the progression of this disease.
    Consequently, in addition to the efforts on prevention of 
AD, we must be equally mindful of improving the care and the 
quality of life for those suffering from this disease and from 
alleviating the burden faced by the informal caregivers who 
provide the majority of care for their friends and families 
with AD.
    As an overview, these issues form the cornerstones of 
NINR's portfolio on AD research. We support clinical and basic 
research to build a scientific foundation for clinical 
practice, to prevent disease and disability, to eliminate 
symptoms caused by illness, and to enhance end-of-life and 
palliative care, as well as training the next generation of 
scientists.
    As part of this mission, NINR focuses on quality of care 
and quality of life for older adults with AD and other 
dementias, as well as their informal caregivers. We study 
interventions for alleviating symptoms such as pain, 
discomfort, delirium, improving communication for clinicians, 
and memory support. For example, NINR is currently supporting a 
project to test the effectiveness of an activity-based 
intervention to increase quality of life by reducing agitation 
and passivity, and increasing engagement and positive mood in 
nursing home residents with dementia.
    Another example is an intervention designed to improve 
early detection and management of delirium in those with 
dementia. This has the potential to improve the quality of life 
and decrease costs of care.
    A third project currently underway is one testing an 
evidence-based, nurse practitioner-guided intervention for 
patients with AD or other dementia and their family caregivers. 
This intervention is expected to improve overall quality of 
life by decreasing depressive symptoms, reducing burden, and 
improving self-efficacy.
    NINR also emphasizes research on interventions aimed at 
improving quality of life and reducing burden for caregivers. 
There are nearly 11 million unpaid caregivers responsible for 
caring for loved ones with Alzheimer's disease. These 
caregivers often experience stress, burden, depression, and 
decline in their own physical health while taking care of their 
loved ones with chronic illnesses such as AD and other forms of 
dementia. We need better interventions to assist these 
caregivers, to help them manage their symptoms, and reduce 
stress, so they may continue to remain healthy while they 
provide care. Recognizing these challenges, nurse scientists 
conduct research to improve the skills caregivers need to 
provide in-home care, and to teach caregivers health promotion 
and behaviors that will help them to maintain and improve their 
own health and emotional well-being.
    As an example, NINR currently supports a study that uses a 
telephone-based intervention for caregivers to enhance 
emotional support; locate needed resources; improve coping 
skills; and assist in attending to physical, social, and 
emotional needs.
    Another current project involves the development and 
testing of an intervention to promote and improve shared 
decisionmaking and communication between the caregivers of 
persons with advanced dementia and clinicians in regards to 
tube feeding and treatment decisions.
    A third example is studying the effects of a psycho-
educational and physical exercise interventions in family 
caregivers of African American dementia patients, and the 
caregivers of heart failure patients, to promote health and 
reduce cardiovascular risk.
    The studies that I have described just now provide merely a 
glimpse of the current efforts to improve the quality of life 
and care for those with AD and their caregivers, efforts that 
offer the promise of a better tomorrow for individuals affected 
by dementia.
    But what have we learned so far? Scientists have made 
substantial progress in understanding the challenges of living 
with AD and developing interventions to support the caregivers. 
I would draw your attention to recent findings from some of 
these studies that are NINR-supported.
    One of the challenges of providing quality care for older 
adults with AD is accurately detecting and treating symptoms 
such as pain and discomfort, which is critical to their quality 
of life. It is essential for health care providers as well as 
informal caregivers to have the tools to recognize pain in 
older adults with dementia who may not be able to express their 
need for pain relief. A recent study funded by NINR showed a 
discrepancy between the pain reported by the dementia patients 
and the pain behaviors that were observed. In this study, 
cognitively impaired older adults self-reported less intense 
pain after movement activities such as walking and other 
movements, than the cognitively intact older adults. However, 
the behavioral observations of pain such as grimacing and 
verbal complaints showed no differences between the two groups. 
This suggests that commonly used self-report measures of pain 
may underestimate pain in older adults with dementia.
    Another recent NINR funded study showed that a 
comprehensive exercise program increased positive mood and 
decreased negative mood in nursing home residents with AD. 
Preliminary findings regarding health promotion interventions 
for older adults with early stage dementia living in the 
community, as well as interventions to increase activity 
engagement in nursing home residents with dementia, demonstrate 
that such interventions have the potential for improving 
quality of life for this group.
    Now, what about the caregivers? Recent findings from our 
supported investigators are also contributing to the 
development of an evidence base of interventions to support 
caregivers. One example is the ``Resources for Enhancing 
Alzheimer's Caregiver Health'' program, which Kathy mentioned 
earlier, also known as REACH. Co-funded by NINR and the 
National Institute on Aging, REACH is a comprehensive, multi-
site intervention to assist AD caregivers. This program teaches 
the caregivers about AD, along with giving strategies to help 
them manage the troublesome behaviors of the care recipients, 
something that Senator Kohl referred to earlier. It also 
emphasizes ways for caregivers to manage stress, maintain their 
social support groups, and enhance their own health with self-
care activities.
    In a recent study involving AD caregivers from diverse 
racial and ethnic groups, those who received the REACH 
intervention reported better physical, emotional, and overall 
health compared to those who received the usual care packet of 
basic AD educational information and two brief check-in 
telephone calls. In addition, the REACH caregivers had lower 
scores for depression, which contributed to reducing their 
sense of caregiving burden.
    These findings indicate that the REACH program, by 
providing information about both AD and self-care, helped AD 
caregivers from diverse racial and ethnic groups maintain their 
own physical, emotional, and mental well-being. Multiple 
efforts across the Federal Government are currently underway to 
implement REACH in the community.
    So with regard to teaching the next generation of 
scientists and caregivers, to ensure continued advancement in 
improving care for AD and other dementias, it is essential that 
we train the next generation of innovative, interdisciplinary 
scientists and clinicians with expertise in chronic illness and 
symptom management and with the knowledge necessary to 
translate successful research to clinical practice.
    To this end, NINR supports extensive training activities 
across all of the areas of our scientific portfolios. Current 
efforts include training future nurse scientists and clinicians 
to conduct research on transitional and personalized care for 
chronically ill older adults, biobehavioral pain research, 
genetics, and basic neuroscience, all of which are relevant to 
the care of those with AD and other dementias.
    In conclusion, I would like again to thank the committee 
for offering me the opportunity to present an overview of the 
research and training activities at the National Institute of 
Nursing Research at NIH, those activities to improve the lives 
of older adults with AD and their caregivers. As we await the 
day when Alzheimer's disease can be prevented and successfully 
treated, we must never lose sight of the needs of the 
individuals suffering from these and other dementias and the 
people who care for them. Given this, the National Institute of 
Nursing Research and the NIH will continue our comprehensive 
efforts to provide the evidence base for providing and 
improving the quality of care and quality of life for 
individuals affected by these illnesses. We will also train the 
next cohort of researchers and clinicians to generate new 
discoveries and provide better care, and to translate this into 
everyday practice.
    Thank you all very much.
    [The prepared statement of Dr. Grady follows:]

[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    
    Ms. Montgomery. Well, thanks to both of you. I am Anne 
Montgomery. I am a senior policy advisor for the Aging 
Committee, and it is my pleasure to field a couple of questions 
for Assistant Secretary Greenlee who will not be able to stay 
for the second panel, as she has other commitments. We are 
going to be able to have Dr. Grady stay for the second panel.
    So I would like to ask a couple of questions that both of 
you could answer, and since both of you discussed family 
caregivers quite a bit, I am wondering if you are a family 
caregiver out there in whatever State you live in, what are 
some of the very best ways and quickest ways you can access the 
most comprehensive information on how to support a loved one 
with dementia who is at home? Is there sort of a single best 
organized website or source, or is it really best to search 
widely?
    Ms. Greenlee. The best resource is the network of aging 
service providers around the country. They have different names 
sometimes in different places but a local aging and disability 
resource center, an area agency on aging; of course, if the 
caregiver is caring for someone with Alzheimer's or related 
dementia, the Alzheimer's Association locally. If someone looks 
at their local community and cannot figure out where to call, 
there are State resources with the State unit on aging and a 
State Alzheimer's chapter that would be helpful as well. We 
have information on our website at the Administration on Aging, 
aoa.gov. We support the National Alzheimer's Hotline where 
people can call and get information as well.
    Dr. Grady. Also, if I could add that we would recommend our 
website. But we do fund at least two web-based resources for 
education and training of both the caregivers at home and also 
the variety of health care workers in the care settings from 
the hospital to the nursing home and extended care. So I think 
there are a number of these. Also, as Kathy mentioned, the 
local Alzheimer's foundations and associations are really 
helpful with hands-on material.
    Ms. Montgomery. We are delighted to have them on the second 
panel.
    Speaking of the second panel, one of our witnesses, Laura 
Gitlin, will be discussing interventions for family caregivers 
who support a relative or friend at home, and she includes a 
quote that I found very striking from the journal ``Alzheimer's 
& Dementia.'' It says that, ``failure to fund effective 
caregiver interventions may be fiscally unsound.'' So I am 
wondering if you agree with that, if you feel similarly, and if 
so, are there new strategies that we can embrace to make better 
family caregiver support a reality for more people, or do we 
need to just expand on what we already have and sort of keep 
going?
    Ms. Greenlee. Anne, as I am sure, you know and many people 
here and those watching now, 80 percent of the long-term care 
in this country is provided by families and family caregivers. 
It is a tremendous burden on everyone involved from the family, 
to the community, and to the individual. I think it is 
important that we work with local communities and other 
organizations to keep that care happening. There would be a 
tremendous loss of support for families if we could not do 
that. It also is something that if you quantified would be 
unaffordable for any system and is not what people prefer. So 
it is a wise investment to help family caregivers because it is 
what they want, it is what families support, and it is a good 
investment and worth our time.
    Dr. Grady. I would echo that as well. In preparing for this 
forum, I was reviewing the figures of how much our country 
spends on health care in this particular population, and 
contrasting that with how much is invested in the front end, it 
is pretty dramatic. So I think that anything that we can do to 
help reduce the burden of suffering for this population is 
important to them as well, but also to our health care system.
    We co-funded a study with the VA system that looks at what 
influences the decisions to have to place people in long-term 
care facilities and nursing homes. The first of these is 
related to the skills required to provide care at home for 
people, and that is something that we are trying to do 
something about and we can do something about much of that to 
help prepare people.
    But the second of these, which is close to the third, was 
something happening with their own physical health, that people 
really cannot keep up with the demands of caregiving physically 
themselves. We are talking about typically middle-aged people 
who often are caring for young children as well as older 
adults. So again, it underscores the importance of the 
caregiver piece.
    Then the third was related to the behaviors that people 
develop and some of the difficult characteristics of the 
disorder, and that also is something that we are funding 
studies to try to make a difference in and are showing some 
success--with engagement studies of patients even in the 
nursing homes show that there is a decrease in some of this 
very disruptive behavior if one can engage them.
    Ms. Montgomery. Finally, many more individuals will be 
screened in the coming years for detection of cognitive 
impairment as part of their Medicare wellness exam, and some 
percentage will, be diagnosed as having Alzheimer's or another 
type of dementia. For these individuals, there could well be 
feelings of anxiety or depression. So I am wondering what 
interventions would you point to that can give individuals who 
are living with Alzheimer's hope that they can maintain a high 
quality of life for as long as possible?
    Dr. Grady. There are a number of studies that are now 
giving us information to help out with this. Physical activity, 
and also a number of cognitive and memory system studies or 
approaches, as well as educational and developmental 
approaches, are able to show a decrease in the progression of 
the illness. Some of these decreases are modest, but they are 
promising. So I think that people now can look forward to being 
able to put off some of the progression of illness, not to 
mention that with each passing day, that there is a great deal 
of work which promises to be successful with time, and that may 
allow us to prevent and cure this disorder. For now, we do need 
to focus on maintaining these attributes. Much of the work that 
is going on in neuroscience gives us hope because it really 
points to the enormous plasticity of the brain and the ability 
to recruit other centers in the brain, other parts of the brain 
to help out in areas where those neurons and synapses are not 
working so well such as Alzheimer's.
    Ms. Greenlee. One of the benefits of preventative screening 
like we will have available in Medicare at no cost is the 
ability to detect these diseases early. One of the things that 
we know in working with our clinical partners is when we can 
work with someone in a community setting at early diagnosis, 
that is the best opportunity to do person-centered planning. 
The early stages of any dementia disease, including 
Alzheimer's, is when you want to be involved with the person. 
They do not disappear when they receive this diagnosis. They 
need to be engaged and planning for their own future. Many of 
the good practices that we are now supporting in the field 
around the country is a way to continue to involve the person 
who has the disease in their planning so that they can be 
involved in making decisions so that when they are no longer 
able to be as involved, there is a plan of care that everyone 
can follow that has the input of the person who has the 
disease.
    Dr. Grady. If I could just underscore something that Kathy 
said, one of the marvelous things about having a forum such as 
this and having the Alzheimer's Foundation, the Alzheimer's 
Association, and people like yourselves in the audience is that 
attention is being brought to this problem. For many years, 
because Alzheimer's patients could not speak for themselves, 
they did just literally disappear. As we know, when people 
disappear and are not face forward in front of audiences, they 
are often forgotten. So we have lost some early ground, I 
think, in being able to address this issue. So the fact that 
all of you are here today and that we are paying attention to 
this and speaking openly, cannot be underscored in its 
importance.
    Ms. Montgomery. Well, thank you very much. Those are 
excellent presentations and remarks and very inspirational, if 
I may say so. So now we will say thank you again and have our 
second panel come up. [Applause.]
    Ms. Hennie. Hello. My name is Alicia Hennie and I work for 
Senator Corker's Aging Committee staff. It is my pleasure to 
call up our next panel and introduce them as they get situated.
    First, we have Loren Shook. He is Chairman, President, and 
CEO of Silverado Senior Living, a nationally recognized leader 
in services to those with Alzheimer's disease and other memory 
impairing diseases. Silverado currently has 20 assisted living 
communities throughout California, Utah, Texas, and Arizona 
with plans for growth. In addition, Silverado has five care 
management home care offices and eight hospice offices.
    Mr. Shook has served on various boards, including the 
Assisted Living Federation of America, the American Senior 
Housing Association, the National Investment Center, and is 
past chair and board member of the Alzheimer's Association of 
Orange County, CA. Before co-founding Silverado Senior Living, 
Mr. Shook was president of worldwide operations at Community 
Psychiatric Centers.
    Next we will then hear from Dr. Laura Gitlin, Director of 
the Jefferson Center for Applied Research on Aging and Health 
at Thomas Jefferson University and a professor at the Jefferson 
School of Health Professions, Department of Occupational 
Therapy. As of January 15, 2011, she will be Director of a new 
center on innovation and aging and health at the Johns Hopkins 
University School of Nursing, with joint appointments in the 
School of Medicine, Departments of Psychiatry, and Behavioral 
Services and Medicine, and the Division of Geriatrics. Dr. 
Gitlin's NIH-funded intervention, ``Skills to Care for Families 
of Individuals with Dementia,'' has won numerous awards, 
including a SAMHSA service award and the Rosalynn Carter 
Institute caregiver program merit award.
    Next is Dr. Christine Kovach, professor at the College of 
Nursing at the University of Wisconsin-Milwaukee. She 
researches innovative approaches to dementia care, including 
pain management in advanced dementia cases. Dr. Kovach opened 
and conducted research on some of the first hospice households 
designed to care for people with late-stage dementia. She has 
also researched the programmatic, environmental, and behavioral 
aspects of special care units for mid-stage dementia. Dr. 
Kovach is a fellow of the American Academy of Nursing and the 
Gerontological Society of America.
    Our final panelist is Patricia McGinnis, Director of 
California Advocates for Nursing Home Reform. Ms. McGinnis has 
written and lectured extensively on elder abuse and long-term 
care issues, and has served as an adjunct professor in San 
Francisco State University's Gerontology program. She has 
received numerous awards for her advocacy on behalf of long-
term care consumers in California.
    For closing remarks and reflections on what we are about to 
hear from this panel, we are thankful to have the Alzheimer's 
Association and Alzheimer's Foundation of America to wrap up.
    Robert Egge, the Alzheimer's Association's Vice President 
of Public Policy, will start our discussion. Chief among his 
priorities are increasing Federal support for Alzheimer's 
research, enhancing Alzheimer's care and support, and improving 
Alzheimer's planning, coordination, and education by Federal 
and State agencies. Previously Mr. Egge was executive director 
of the Alzheimer's Study Group, a blue ribbon task force of 
national leaders. Mr. Egge worked closely with the co-chairs, 
former Speaker Newt Gingrich and former Senator Bob Kerrey and 
other Alzheimer's Study Group members, such as former U.S. 
Supreme Court Justice Sandra Day O'Connor, to shape and develop 
the group's national assessment strategy and specific policy 
proposals.
    Wrapping up will be Eric J. Hall, President and founding 
CEO of the Alzheimer's Foundation of America. Mr. Hall founded 
AFA to improve the quality of care for dementia patients and 
their families by allowing organizations nationwide to advocate 
for optimal care and enhanced services. AFA now includes 
approximately 800 member organizations and associate member 
organizations. As CEO, Mr. Hall started the AFA ``Quilt to 
Remember,'' National Memory Screening Day, and the Nation's 
first magazine for dementia caregivers, among other major 
initiatives.
    We welcome you all and look forward to an interesting and 
informative discussion, and with that, I turn it over to Mr. 
Shook.

    STATEMENT OF LOREN SHOOK, CHAIRMAN, PRESIDENT, AND CEO, 
   SILVERADO SENIOR LIVING, ON BEHALF OF THE ASSISTED LIVING 
               FEDERATION OF AMERICA, IRVINE, CA

    Mr. Shook. Thank you, Chairman Kohl and Ranking Member 
Corker, for having me here today to speak to you.
    As mentioned, I am Loren Shook, President and CEO of 
Silverado Senior Living and Vice Chair of Assisted Living 
Federation of America. ALFA represents the assisted living 
industry, the owners and operators of assisted living 
communities, and the frail elderly residents they serve. The 
assisted living industry is resident-centered care in a 
community home-based setting.
    My company, specifically Silverado Senior Living, operates 
20 communities in four States entirely dedicated to serving 
those with memory-impairing diseases such as Alzheimer's 
disease and other dementias. I will be discussing how my 
company meets their needs.
    The Silverado philosophy of care and the company vision is 
to give life. Our purpose is to give life to the residents we 
serve, their families, and the associates. We are additionally 
a purpose-driven company designed to change the way memory care 
services are provided, and it is in this process that we seek 
to touch the human spirit in all that we do. Silverado Senior 
Living cares for people with all types of memory-impairing 
diseases, including Alzheimer's, Parkinson's, and others. We 
provide a full continuum of memory impairment care, from the 
disease's early onset with geriatric care management and home 
care and residential care services, in addition to hospice care 
at the end of life.
    We partner with many universities in the markets we work 
with, such as the University of Southern California, University 
of California at Los Angeles, University of California at San 
Diego, Baylor College of Medicine, Stanford University, and the 
University of Utah in Salt Lake City.
    We founded the company in 1996, opening our first assisted 
living community in June 1997. Silverado now operates 20 memory 
care communities with 1,578 beds in four States. Silverado has 
five home care offices and eight hospice care offices. In 
addition, we offer skilled nursing services for rehabilitation 
purposes for those who have memory-impairing diseases in Salt 
Lake City, UT, and Dallas, TX.
    We serve the population in the setting of their choice, be 
it at their own home, at residential settings such as Silverado 
or others, or even in a skilled nursing facility.
    Providing care for our aging population, especially for 
those with memory-impairing diseases, is more than just meeting 
their medical needs. It is about providing for their 
psychosocial needs as well. It includes providing and 
supporting a quality of life that brings life-affirming meaning 
and fulfillment to them daily. In an assisted living setting, 
enhancing quality of life requires that the following elements 
be in place in order to create and maintain a supportive and 
life-enriching environment: a philosophy of care promoting 
independence, choice, dignity, and daily purpose for each 
resident; quality and compassionate staff who are trained to 
meet the unique needs of this population; and a strong 
supportive company culture which is clear to all staff. A 
culture where the operating philosophy of love is greater than 
fear prevails.
    Our environments provide a social setting which is 
comfortable, home-like, and attractive. Age-appropriate, 
engaging activities which promote self-worth, involved, and 
purpose are offered. Coordination with care practitioners is 
encouraged and a comprehensive plan designed in conjunction 
with the primary care team is developed in order to create a 
holistic approach to meet individual needs.
    The Silverado model of care is different than most 
traditional settings in that it focuses on creating an 
attractive social home-like residential environment in addition 
to adding a strong clinical support component, including 
physician medical directors, and licensed nurses 24 hours/7 
days a week, and Masters-trained social workers who work with 
families and residents. In so doing, we meet the comprehensive 
needs of people from the beginning through the end of their 
life.
    Silverado has developed extensive clinical outcome measures 
that provide the following benefits: documentable evidence-
based results showing quality of care and quality of life 
benefits; provides a management tool to benchmark one Silverado 
community against another. It also demonstrates savings to 
payers that are real.
    At the start of the company in 1997, Silverado collected 
data on use of psychotropic medications, ambulation, feeding, 
weight gain/loss, falls, and pressure wounds.
    In the case of psychotropic medication use, we record each 
of our 1,250-plus residents' use of medications every month, 
separating medications by the following categories: anti-
anxiety, antipsychotic, sedative hypnotic, and use of 
antidepressants. Every resident is assessed using the ``Cornell 
Scale for Depression in Dementia,'' or a similar tool. We find 
that about 60 percent of the residents need treatment for 
depression.
    Because of our excellent results in serving the most 
challenging behavioral cases and our expertise in serving 
complex diagnoses like frontotemporal dementia, which also is 
called Picks disease, Lewy-Body dementia, et cetera, we are the 
No. 1 referral choice for people with challenging behaviors 
from behavioral health hospitals, assisted livings, and even 
skilled nursing, as well as cognitive assessment centers. 
Taking the cases that no one else is willing or able to handle, 
we have experienced an overall reduction in the use of 
psychotropic medications in excess of 30 percent company-wide. 
We have served over 1,458 people who had major behavioral 
problems in a 3-year period between 2006 and 2009. We did not 
collect specific data before that.
    Over the years, our clinical outcome scores were expanded 
to include the rate of transfers to acute care; the percent of 
residents on hospice care; and the percent of resident deaths 
on hospice care; and the number of prescription medications 
residents take. We have other clinical results that include 
reducing residents' medications from the 9 to 12 prescription 
medications they move in with to an average of 5.5 company-
wide. This compares to skilled nursing at 12, and traditional 
assisted living at 7 to 8 medications per resident.
    While it is estimated that 6 to 8 percent of people with 
dementia fall and experience fracture each year--including 
people within settings that restrain them--Silverado has a fall 
and fracture rate of only one percent without restraining 
anyone company-wide. Compared to nursing homes where 10 to 20 
percent of falls cause serious injury, at Silverado only 4.8 
percent of falls cause serious injury.
    The details of Silverado's award-winning fall prevention 
program and our award-winning grand rounds behavior 
intervention conference calls have been shared with the 
Committee on Aging and others who are interested in a document 
entitled ``Enhancing the Quality of Life in a Dementia Care 
Assisted Living Environment.'' These programs are easily 
replicable by others. Silverado does teachings of these 
programs at industry conferences and just did a nationwide 
webinar on the fall prevention program.
    Let me tell you a true life story that exemplifies how 
Silverado's vision to give life and the Silverado model of care 
affects people with all types of memory-impairing diseases. As 
chronicled in the book ``Alive with Alzheimer's,'' Edith, a 
memory-impaired woman who was bedbound, unresponsive, terribly 
feeble, and frankly considered near the end of her life, was 
brought to the Silverado Senior Living-Escondido community in 
April 2001. We surrounded her with music and assigned a 
Silverado cat to Edith since we found she loved cats, spoke to 
her even though she could not speak to us, reduced the overly 
large number of medications she was being given in an effort to 
control her symptoms and behavior, and started the process of 
getting her out of bed and taking a few steps.
    Within 4 weeks, Edith regained her ability to walk on her 
own. The book shows her sitting in the stands of the Del Mar 
Race Track in southern California, talking with her friends, 
and enjoying the company of her daughter, and cheering her 
horse on, we hope, to success. We are proud to say that Edith's 
story is replicated throughout Silverado 3,600-plus times. 
Edith has passed away in 2010, 9 years later.
    We believe that people with Alzheimer's disease and other 
memory-impairing diseases want to lead purposeful lives.
    Let me tell you my final story about Walter, a 99-year-old 
resident at Silverado, and Lisa, the 7-year-old daughter of a 
staff member who works in the laundry services. This is an 
adaptation from the book ``Silverado's Story,'' which my 
partner, Steve Wynn, and I have written.
    Whether Walter was in Silverado's country kitchen, the 
garden, his home, or elsewhere in the community, Lisa somehow 
knew where to find him. When she arrived after school, this was 
no mean feat, in a building of 38,000 square feet on a 5-acre 
campus, and Lisa having been blind at birth. But it was a kind 
of bond they had. Lisa always knew where to find Walter, and he 
was in places where she would like to be as well.
    One afternoon, Lisa found Walter sitting in the gazebo. 
Walter spotted her crossing the lawn and broke into a wide 
grin. ``Lisa, I am over here,'' he called out. He knew that 
Lisa's instincts would bring her to him anyway, but there was 
just too much pleasure in having to say her name. Lisa's face 
lit up and she hugged him right away. They sat and talked for a 
bit. Then Walter asked the question that Lisa was expecting, 
the one she hoped he would ask. ``Lisa, can you count to 200 
for me?'' Lisa began counting. Walter leaned a little closer to 
hear her and listen attentively as she continued. He was 
committed to improving her math skills. Lisa, excellent in the 
subject already, in truth needed no additional practice. But 
every time she reached 200 without an error, Walter would 
congratulate her and the pride in his voice always made her 
happy.
    Later that day, Lisa took Walter's hand and put it on her 
face. She asked Walter, ``am I beautiful?'' Walter replied, 
``you are the most beautiful little girl there ever was. Your 
hair has a soft sheen that reflects the sun. Your complexion 
would be the envy of little girls everywhere. Believe me. You 
are a gift from God.'' Lisa smiled and bowed her head and they 
both sat quietly for a while.
    Walter was 99 years old. His advancing memory impairment 
had reduced the size of his brain by one-third, according to 
scientists, who say the actions of persons in his condition are 
not guided by intention or comprehension. But Walter knew 
exactly what to do for Lisa. Lisa was his purpose.
    World-class health care is made up of four things: the 
physical, the science behind it; the psychological; the family; 
and the spiritual. Throughout Silverado's model of care all 
four of these essential elements are served resulting in 
measurable clinical results that are truly remarkable like the 
story about Walter and Lisa and Edith.
    It has been an honor to present to you today, Chairman Kohl 
and Ranking Member Corker and members of the committee. Thank 
you for your time and attention.
    [The prepared statement of Mr. Shook follows:]

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STATEMENT OF LAURA N. GITLIN, PH.D., DIRECTOR, JEFFERSON CENTER 
  FOR APPLIED RESEARCH ON AGING AND HEALTH, THOMAS JEFFERSON 
                  UNIVERSITY, PHILADELPHIA, PA

    Dr. Gitlin. Good afternoon. I would like to thank Senators 
Kohl and Corker and members of the committee for inviting me to 
present at this very critical and important forum.
    I would like to start by telling you about Millie. Shortly 
after her husband passed away, Millie became increasingly 
forgetful and delusional. With time, however, Millie's 
condition worsened, and she was finally diagnosed with 
dementia. Millie moved in with her daughter Diane and her 
family. Diane had to stop working to care for her mother, and 
she quickly found that she had to manage many complications of 
the disease beyond that of memory loss. Millie constantly 
followed Diane around the house. She repeatedly asked questions 
such as what day and time it was and where Diane was going. She 
resisted bathing and appeared fearful of the tub, and she 
roamed the house in the middle of the night, sometimes trying 
to leave.
    Diane thought that her mom also might be in pain due to 
arthritis, but she could not gauge her pain as Millie had 
difficulties communicating, a common factor in dementia.
    Diane felt guilty that she was not doing enough for her 
mom. She became increasingly distressed due to her lack of 
sleep and having to juggle the care of her mother with that of 
her family. Her health in turn began to suffer and she missed 
her own doctor appointments.
    Millie's story is not unusual. She is one of the over 5 
million people in the United States who suffer from Alzheimer's 
disease or a related disorder, the majority of whom live at 
home with a family member or alone in the community. This is 
also the story of the over 11 million family members who, like 
Diane, are caring for their family members with dementia. 
Although each situation is unique, family caregivers share 
similar challenges and experiences. They are often exhausted, 
frustrated, saddened, and unsure how to manage functional 
dependence and troublesome behaviors such as wandering, 
agitation, or waking up at night such as in the case of Millie, 
which are common and can occur throughout the disease process. 
They also must make very difficult decisions with little to no 
help or formal support.
    Although we know that a cure for dementia is not in sight 
now or in the near future, there are treatments available right 
now that could help Millie and Diane. Most families, however, 
do not hear about them. These therapies--called non-
pharmacologic treatments--do not come in a pill. Instead, they 
may involve personal counseling, education, hands-on-skills 
training, home modification, exercise, or simplifying 
activities. These treatments, as you have heard from the 
morning panel, are based on over 2 decades of evidence from 
randomized controlled trials funded by the NIH and the 
Alzheimer's Association.
    One example of an effective intervention is Project COPE. 
This was developed and tested recently by myself and my 
research team at Thomas Jefferson University. In a randomized 
trial with 237 families, we recently reported in the ``Journal 
of the American Medical Association'' that our home-based 
intervention, provided by occupational therapists and nurses, 
minimized functional dependence, and minimized behaviors in 
persons with dementia such as Millie, while enhancing their 
quality of life. It also reduced caregiver burden and helped 
caregivers keep their family members at home. We also found an 
alarming number--close to 40 percent--of people with dementia 
in the intervention group, who had an undiagnosed but treatable 
medical condition, such as a urinary tract infection. This 
finding in particular raises significant concerns about the 
frequency with which this clinical population should be 
monitored medically.
    When Millie became a recipient of Project COPE, an 
occupational therapist conducted a systematic assessment of her 
abilities and her deficit areas. She also observed Diane's 
communication style, and the physical home environment for its 
safety and the way it supported Millie.The therapist helped 
Diane understand the disease and what Millie was still capable 
of doing, not just what she could not do. She introduced 
practical methods and new skills to help Diane cope, including 
stress reduction techniques to ease Diane's stress level, 
assistive devices such as grab bars and tub benches to help 
Millie bathe safely and without fear, and simple activities to 
decrease Millie's anxiety. As Millie had been a housewife, 
teaching Diane how to involve her mom in washing dishes and 
folding laundry enabled Millie to continue to participate in a 
meaningful way in the daily life of the family, and to feel an 
important sense of accomplishment.
    The occupational therapist also helped to establish a 
night-time routine for Millie that included eliminating 
caffeinated drinks and before bedtime taking a bath, playing 
soothing music, and using a nightlight. The routine prepared 
her for bed in a relaxed manner and reduced her erratic 
behavior. This, in turn, benefited Diane, who was able to sleep 
through the night and have more time for herself during the 
day.
    A nurse also helped Diane understand how to detect pain in 
her mother by paying attention to her facial gestures and 
physical movements, and also how to monitor her fluid intake 
and daily elimination patterns. The nurse also took blood and 
urine samples from Millie and discovered that she indeed had a 
urinary tract infection and hyperthyroidism--conditions which 
may have contributed to her agitated and sleepless states. 
These were subsequently treated by a doctor.
    In the Philadelphia region, we are now able to offer COPE 
as an outpatient home care service for people with dementia who 
have Medicare and qualify for skilled care by an occupational 
therapist. However, most families do not have access to this 
and other proven non-pharmacologic dementia care services.
    A recent study by researchers at Johns Hopkins University 
of 264 families surveyed at home found that of those 
individuals with dementia, 90 percent had home safety issues; 
64 percent had medical care issues that were untreated; 48 
percent had legal concerns; and 37 percent were not engaged in 
any meaningful activities. With respect to their caregivers, 88 
percent needed a referral for a resource, 84 percent needed 
education about the disease, 45 percent had unaddressed mental 
health issues, and 24 percent had unmanaged health problems. 
Yet, our research by me and that of numerous other scientists 
that Dr. Grady spoke about suggests that non-pharmacologic 
approaches can address all of these unmet critical needs.
    As Dr. Covinsky stated in an editorial in the ``Annals of 
Internal Medicine'' in response to the positive caregiver 
outcomes of the NIH REACH initiative, if these interventions 
were drugs, it is hard to believe that they would not be on the 
fast track to approval. The magnitude of benefit and the 
quality of evidence supporting these interventions considerably 
exceed those of currently approved pharmacologic therapies for 
dementia.
    There is also an economic argument to be made for better 
dementia and caregiver supportive programs. As we have heard, 
in 2009 nearly 11 million unpaid caregivers provided an 
estimated 12.5 billion hours of care to people with dementia, 
valued at nearly $144 billion. Our country cannot afford the 
consequences of family caregivers becoming burnt out or too 
sick to carry on.
    Non-pharmacologic therapies may save more than they cost. 
Peer-reviewed studies have shown, for example, that the ``NYU 
Caregiver Intervention'' of counseling and ongoing caregiver 
support delayed nursing home placement by an average of 557 
days, as was spoken about in the earlier panel. This could mean 
a savings of $100,000 per patient.
    An occupational therapy activity program we developed and 
tested at Thomas Jefferson University not only radically 
reduced behavioral disturbances, but it cost an average of $941 
per family and was found to be cost effective. It saved 
caregivers up to 5 hours a day, at a cost of only $2.37 per 
day. The cost of drug treatment is approximately $5 per day, or 
$1,825 per year.
    Despite the promise of non-pharmacologic approaches, there 
are many challenges. Chiefly, we lack a national strategy for 
developing a new standard of care for individuals with dementia 
and their families that includes comprehensive and ongoing 
supportive, proven non-pharmacologic approaches. A national 
strategy might include funding large-scale demonstration 
projects that integrate the most promising non-pharmacologic 
approaches to date, and widespread training of health and human 
service professionals in these proven dementia care and 
caregiver supportive programs. It might include expanding our 
current reimbursement structures to allow for the provision of 
existing proven caregiver and dementia care programs at home. 
It might include expanding funding to support implementation of 
proven programs into a variety of practice settings, including 
home care, hospital discharge services, care management 
services, and rehabilitation services--all places where 
dementia patients are found.
    I urge the Committee to move forward with the strategic 
vision for enabling non-pharmacologic strategies to become part 
of the standard of care that is available to all individuals 
with dementia and their family members in order to address one 
of the most devastating diseases of our time, and which soon 
will be an epidemic. Thank you.
    [The prepared statement of Dr. Gitlin follows:]

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   STATEMENT OF CHRISTINE R. KOVACH, PH.D., R.N., F.A.A.N., 
  PROFESSOR AND METHODS CORE DIRECTOR, COLLEGE OF NURSING AND 
    SELF-MANAGEMENT SCIENCE CENTER, UNIVERSITY OF WISCONSIN-
                    MILWAUKEE, MILWAUKEE, WI

    Dr. Kovach. Good afternoon. In my time with you this 
afternoon, I will be talking about nursing home care, posing a 
few of the problems and some solutions. Because 50 to 75 
percent of nursing home residents have dementia, the topic of 
nursing home quality of care is particularly relevant for this 
population.
    The needs of nursing home residents with dementia are often 
left unmet because staff do not know how to interpret dementia 
behaviors, complete a comprehensive assessment, or intervene to 
meet needs. In a recent 6-month period, the Milwaukee Police 
Department was called 386 times to nursing homes. Many of these 
calls were for behavioral issues. Commonly the individual is 
restrained and handcuffed in order for law enforcement 
officials to transport him or her. A ``Chapter 51'' petition is 
initiated so the person can be involuntarily committed to a 
psychiatric facility. These transfers in and of themselves 
create trauma for the individual, and can worsen health and 
behavior. In too many cases, emergency detention is being used 
as a vehicle to involuntarily medicate people with dementia and 
to discharge or get them out of the nursing home, despite the 
fact that the FDA has issued a black box warning against such 
use. This should not be happening. We can do better.
    We have tested an assessment and treatment protocol called 
the ``Serial Trial Intervention'' in two randomized controlled 
trials funded by NIH, and the intervention was found to be 
highly effective in decreasing agitated behaviors, discomfort, 
and comorbid problems. However, widespread diffusion of this 
intervention into practice, particularly in poor-performing 
homes, will not be far-reaching without Federal implementation 
programs. Our research and that of others shows that dementia 
behaviors often represent a physical or psychosocial unmet 
need. For example, if a person is being moved into the bathtub 
and is resistive, that often means that the person is having 
arthritic pain, and if you time their medications more 
appropriately, you will prevent this behavior from happening. 
If the etiology for the behavior is psychosocial, teaching 
staff to provide better anticipatory care can prevent the 
problem or at least prevent it from escalating to a crisis 
point.
    Our research found that the most important factor in 
determining the speed with which a change in condition is 
identified in people with dementia is the quality of the 
nurse's assessment. I will share one example from our study.
    A woman with dementia began exhibiting behavior that was 
deemed to be paranoid and she was medicated with an 
antipsychotic drug. Anytime any staff member went into her room 
or approached her, she would go, no, no, oo, oo, and get very 
anxious.
    Well, looking back on her chart, I could see that there was 
something going on with her right hip. Finally, 27 days after 
this behavior changed, her hip was finally x-rayed and she was 
found to have a fractured hip. This was this woman's method of 
communicating that if you move me, I am going to hurt, but yet 
she was medicated inappropriately. Imagine the month of pain 
that this woman endured before she was diagnosed with a 
fractured hip.
    So in terms of solutions, competence of staff needs to be 
improved through training, through requiring that more 
registered nurses provide care in the nursing home, and through 
the widescale transfer of empirically validated interventions, 
such as the Serial Trial Intervention, into clinical care in 
nursing homes. The goal is to reduce out-of-facility placement 
into general acute or acute psychiatric hospitals, and to keep 
people comfortable in the nursing home. The Serial Trial 
Intervention is a clear and straightforward protocol that is 
initiated when the person has a behavior change and it is 
unclear what the cause or the problem is.
    I will share one case. A gentleman was living at home and 
highly agitated on a daily basis. He was restless and 
obsessively complaining about burning in his legs and a deep 
itch. The family could no longer cope with this behavior and he 
was transferred into the nursing home. He continued to be very 
restless and agitated. He was entered into our study and he 
complained about his legs saying, ``I could go down there and 
pull my skin off.'' Many of you may recognize that this symptom 
is a pretty typical complaint for people who are having 
neuropathic pain. However, because he was a person who had 
dementia, people viewed the behavior as psychiatric in origin, 
and none of the care providers thought that it might be pain 
until they got to step 4 of our protocol. The nurse 
administered a low-dose analgesic, saw a dramatic difference in 
the resident's responsiveness, called the physician, and he was 
placed on an appropriate med for neuropathic pain.
    The staff described his behavior following treatment as a 
day-and-night difference. He was now 100 percent relaxed. We 
have to wonder if earlier detection and treatment of his pain 
could have prevented or delayed his transfer to the nursing 
home.
    I want to emphasize that the majority of people we assess 
and treat with this intervention are treated with non-
pharmacological interventions. It is common for us to find that 
the person has too many environmental stressors, is not 
receiving enough exercise, is bored, or is not receiving enough 
meaningful human interaction. These needs are easily met with 
inexpensive non-pharmacological interventions that have no side 
effects.
    My recommendation is that this intervention be used to 
transform nursing home care across the United States. This 
intervention is not costly, it's replicable and effective, and 
has been associated with no serious side effects.
    Next, I would like to talk a little bit about the fact that 
nursing homes are where a lot of people die. Twenty-two percent 
of people in the United States die in nursing homes, and that 
number would be considerably higher if not for the very common 
practice of transferring people out of the nursing home into 
the hospital just prior to death. Nursing home staff should be 
experts in the palliative model of care, which calls for 
comfort, for caring for the whole person, and caring for the 
family. Yet, research consistently shows that nursing home 
staff are very poor at symptom management and that hospice 
services are under-utilized. When hospice services are used, 
nursing home staff then think the responsibility for management 
of symptoms lies with the hospice staff, so they decrease their 
engagement.
    In terms of solutions, the competence of nursing home and 
hospice staff needs to be improved. Hospice staff, while great 
at cancer management, often have limited understanding of how 
to care for people with end-stage dementia at the end of life. 
Nursing home staff need increased education, and they need to 
be held more responsible for symptom management and for family 
counseling.
    Next, I would like to talk about nursing home culture and 
environmental design contributing to physical and psycho-social 
problems. There are many things I could touch on here, but I 
want to mention that many nursing homes were initially designed 
based on a medical model for care delivery, with long 
corridors, institutional scale, and very rigid schedules.
    This creates a host of problems. For example, bodies are 
meant to move. When bodies don't move, when their movement is 
limited, all sorts of problems ensue. People end up in 
wheelchairs, they end up falling, they end up developing 
pressure sores and muscles atrophy.
    In terms of psycho-social problems, a psycho-social problem 
of becoming institutionalized has been described in multiple 
reports regarding nursing home care. In this process, people 
give up having preferences and control over their daily 
activities. These changes are accompanied by increased 
depression and anxiety, and decreased perceptions of quality of 
life.
    Nursing home staff can provide all of the skilled care 
needed to residents in environments that are much more home-
like in scale, and with schedules that are much less rigid, 
that allow for residents to retain more control over their 
daily lives. So in terms of solutions, I think we need to begin 
the process of expecting that dining rooms in nursing homes 
will be smaller, and more home-like; for there to be living 
rooms, and for there to be space and opportunity for 
participation in quality of life activities, as well as 
opportunities for maximum mobility in the immediate 
environment. The preferences of residents, even if provided by 
family proxy, need to take more precedence. These are things 
that can be done right now to significantly improve the quality 
of care and the quality of life for those with dementia in 
nursing home.
    Thank you for your attention and your interest in improving 
the care delivered to people with Alzheimer's disease.
    [The prepared statement of Dr. Kovach follows:]

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    STATEMENT OF PATRICIA L. McGINNIS, EXECUTIVE DIRECTOR, 
CALIFORNIA ADVOCATES FOR NURSING HOME REFORM, SAN FRANCISCO, CA

    Ms. McGinnis. Good afternoon. I want to thank the committee 
and certainly the staff of the Senate Special Committee on 
Aging for inviting our organization to address this very 
important forum.
    Our organization, California Advocates for Nursing Home 
Reform, is based in San Francisco and it has been active for 
over 28 years assisting people who need long-term care, and 
their caregivers and relatives. For more than 28 years, our 
organization has heard, firsthand, the confusion, distress, and 
loss that is associated with the misuse of anti-psychotic 
drugs, and other psychoactive medications, to chemically 
restrain nursing home residents who have dementia.
    I want to start by reading a statement about nursing home 
drugging. ``Excessive use of tranquilizers can quickly reduce 
an ambulatory patient to a zombie, confining the patient to a 
chair or bed, causing the patient's muscles to atrophy from 
inaction and causing general health to deteriorate quickly. It 
appears many doctors give blanket instructions to nursing home 
staff for the use of tranquilizer drugs on patients who do not 
need them.''
    This statement sounds as if it was made very recently, but 
in fact, it was made before Congress in 1970, and it was 
included in a 1975 report by the Senate Special Committee on 
Aging titled, ``Drugs in Nursing Homes: Misuse, High Costs, and 
Kickbacks.'' Everything old is new again. Unbelievably, the 
problems have worsened considerably in the last 35 years.
    Today, drugging has reached epidemic levels. Nationally 
more than 350,000 nursing home residents--one of every four 
residents--are given anti-psychotic drugs. The vast majority of 
these residents suffer from dementia, and are receiving drugs 
off-label, meaning that the drugs are provided to control 
behavior, and not to treat a diagnosed mental illness. The way 
anti-psychotic drugs are used in nursing homes is a form of 
elder abuse--let's not kid ourselves. Instead of providing 
individualized care, many nursing homes indiscriminately use 
these drugs to sedate and subdue residents.
    Anti-psychotic drugs carry black-box warnings indicating 
that their use nearly doubles a person with dementia's risk of 
death. But nursing home residents and their representatives are 
rarely informed about these warnings. Anti-psychotics don't 
just hasten death, they often turn elders into people their own 
families don't even recognize by dulling their memories, 
sapping their personalities and crushing their spirits.
    I'd like to make it clear for the Committee that, while 
some psychoactive drugs may have positive benefits for the 
treatment of depression, anxiety, or even dementias, the drugs 
we are focusing on today are anti-psychotics, such as Seroquel, 
Risperdal, Zyprexa, and Haldol, which was the drug of choice in 
the nineties. These drugs are designed for the treatment of 
schizophrenia. There are many reasons that anti-psychotic drugs 
have become the first alternative for intervention in nursing 
homes, particularly for residents who exhibit agitation or 
aggression. Drugs are cheaper than staff, at least on a short-
term basis, as most of these drugs are paid for by Medicare. I 
think the last year, it was about $5 billion.
    Additionally, many doctors who prescribe these drugs and 
the pharmacists who dispense them for dementia are ignorant of 
the risks and effects of the drugs prescribed, and in some 
cases, these doctors and pharmacists are intentionally misled 
by pharmaceutical companies. Just since 2009, over $4 billion 
has been paid to the Federal Government by drug manufacturers 
to settle charges of fraudulent marketing, false claims, and 
kickback schemes.
    Finally, reimbursement for alternative therapies--
particularly for therapists, psychologists, and psychiatrists--
are very limited under the Medicare and Medicaid programs. It's 
a shameful situation, but believe it or not, there are actually 
some positives in this situation, as well. If the biggest 
problem with drugging is that it is the first measure in 
behavioral control for people with dementia it, is also a 
gateway for the inevitable solution. If we shift this culture 
and deemphasize drugging, we can dramatically reduce the misuse 
of anti-psychotic drugs for people with dementia, and most 
importantly, improve their quality of life.
    We already know what an effective campaign to shift this 
culture looks like. Over the last 25 years, there has been a 
pronounced effort by consumers, advocates, the government, 
providers, and others to stop the inappropriate use of physical 
restraints in nursing homes. The result has been startling. 
Physical restraint use has dropped from more than 25 percent of 
all residents, to less than 3 percent. The key to this has been 
concentrated and sustained education, awareness, effort, 
oversight and enforcement.
    Our organization, CANHR, has initiated a campaign in 
California to stop drugging in California, and we are hoping 
that it will take root--throughout the Nation. Our campaign 
combines practical advice for residents and their families and 
caregivers on how to stop the misuse of drugs, along with a 
broad movement to raise awareness, strengthen laws and 
enforcement, and target offenders.
    The Website includes a well-received video series and a 
free advocacy guide called ``Toxic Medicine,'' that we've 
distributed to the committee.
    We've also posted, very significantly for consumers, 
information on every California nursing home's use of anti-
psychotic drugs, to help consumers avoid facilities that are 
using these drugs indiscriminately. The information shows that 
a resident's risk of being drugged varies tremendously by 
nursing home, with some facilities reporting no use of anti-
psychotic drugs, while others drug all of their residents, or a 
majority of their residents.
    The campaign also has a political component, including a 
petition to the Governor, and proposed legislation to 
strengthen informed consent requirements. I cannot emphasize 
enough the importance of informed consent in resolving this 
problem. It's not just about informing people about the risks 
and alternatives to these drugs, it's about treating people who 
suffer from Alzheimer's and dementia with dignity and respect, 
by recognizing their right to make decisions about their 
treatment. A culture of respect for victims of this disease 
will go a long way in curbing the drugging problem.
    We also believe our campaign is a good model for a national 
campaign on this issue, and I urge the committee, and Congress, 
to hold hearings on the misuse of anti-psychotics and to 
embrace the recent national recommendations made by the 
Consumer Voice to stop the chemical restraint of nursing home 
residents.
    A couple of the key recommendations are as follows: First, 
Congress should adopt laws protecting the rights of nursing 
home residents to give informed consent before they are 
drugged. Both American common law and various State statutes 
protect the right of informed consent, but it does not appear 
in Federal nursing home laws. Codifying informed consent would 
give national priority to the concept that people with 
dementia--as any other healthcare recipients--deserve complete 
information about proposed treatments and have the right to 
ultimately decide what medications they can and cannot take.
    Second, we propose an education campaign to elevate the 
issue of anti-psychotic drugs for people with dementia into the 
national consciousness. The Campaign for Families and Advocates 
for People with Dementia would offer information about anti-
psychotic drugs, from the types of medications that are most 
often abused, to the side effects and black-box warnings, to 
the supremacy of alternative approaches, many of which we have 
heard about today.
    As part of this education campaign, CMS should post each 
nursing home's drugging rate on its ``Nursing Home Compare'' 
Website, so that consumers can locate nursing homes that don't 
use anti-psychotic drugs as a substitute for basic dementia 
care.
    For healthcare providers, the education campaign would 
offer best practices for doctors, pharmacists, and facilities, 
stressing that if anti-psychotic drugs are to be used at all, 
they should be used only as a last resort after all non-
pharmacologic interventions have been attempted and failed. The 
essence of these practices should be the promotion of 
individualized care. Individualized care--as we all know, and 
we've known for years--fosters non-pharmacologic interventions 
by placing a premium on relationships with people who have 
dementia, and dignified care approaches, such as increased 
exercise, formal activities and pain management.
    A recent study showed Vermont was able to dramatically 
reduce the use of anti-psychotics in nursing homes by focusing 
on relatively simple alternatives. One alternative was learning 
about a resident's past, so as to better understand the 
resident's needs and personality; understanding who the 
resident is.
    Another alternative is providing consistent care in nursing 
homes, i.e., consistent schedules for nursing home staff so 
that they work with the same resident, and then they can 
understand the resident's personality and they can pick up on 
the early signs of any disturbances, or signs of personality 
changes.
    What is especially helpful about these non-pharmacologic 
interventions is that they are less costly than drugging. Aside 
from the obvious high cost of the drugs themselves is the very 
expensive health care outcomes that they often precipitate--
things like falls, infections, strokes, and hospitalizations 
that are often covered under the Medicare program, and which 
add to the escalating costs of Medicare and Medicaid.
    Using pills to substitute for one-on-one care, or for 
adequate staffing, turns out to be not only bad medicine, but 
also a poor use of our resources. Reimbursement for 
alternative, non-pharmacologic interventions--particularly 
psychotherapy services and many of the interventions and model 
projects we've heard about today--should definitely be 
expanded.
    Congress should investigate, and the U.S. Government should 
continue to aggressively pursue, drug companies' marketing of 
off-label uses of anti-psychotics for nursing home residents.
    I want to make a final conclusion. Twenty-five years ago 
the Senate Special Committee on Aging urged a coordinated 
attack on the dangerous drug misuse in nursing homes led by 
Federal and State officials. With your help, we can begin that 
attack again, and maybe this time actually be successful. We 
call upon our national leaders to not only join a campaign to 
end over drugging in nursing homes, but to lead this campaign. 
Thank you.
    [The prepared statement of Ms. McGinnis follows:]

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    STATEMENT OF ROBERT EGGE, VICE PRESIDENT, PUBLIC POLICY 
            ALZHEIMER'S ASSOCIATION, WASHINGTON, DC

    Mr. Egge. I want to thank, first of all, Chairman Kohl and 
Ranking Member Corker for this forum today. It's an outstanding 
presentation. I also want to thank the panelists for what I 
thought were very illuminating discussions with a common theme 
from a range of approaches--all were very helpful.
    I have been given the unenviable task--along with Eric--of 
trying to summarize this in 5 minutes, from my perspective. I 
want to do so, though, by starting out, even with that time 
constraint, by acknowledging, the leadership of this committee 
over recent years on Alzheimer's disease and related dementias. 
A year ago, in 2009, there was a hearing here where the results 
of the Alzheimer's Study Group's findings were presented along 
with key recommendations. One of those recommendations led to 
the bill that the chairman referenced earlier, the National 
Alzheimer's Project Act, which is right now poised, we believe, 
for passage in this Congress in the remaining weeks and signed 
into law. This legislation is extremely important for reasons 
that have been alluded to by panelists today. We need a 
comprehensive strategy for Alzheimer's and related dementias; a 
strategy that addresses the full range of issues, and it has to 
be a strategy that not only looks at issues like how do we 
encourage the dissemination of psychosocial interventions, but 
also one that approaches these issues with a bias for action. 
That bias for action, I think if you've listened today you've 
heard clearly, why we need that action emphasis in what we do. 
It is certainly true that, as you look at the dimensions of the 
Alzheimer's crisis and other dementias, you see repeatedly the 
cause for moving quickly.
    You've heard today, that already, 5.3 million Americans 
have Alzheimers and 11 million serve as unpaid caregivers. You 
also have heard how, with the aging of our population, these 
numbers are going to increase dramatically to as many as 16 
million Americans with Alzheimer's and other dementias. Of 
course, this means an increase in caregiver demands.
    At the same time, you've heard reasons why this population 
is so costly to care for. Research that we have commissioned 
from Dartmouth University looking at Medicare claims data, has 
found that Medicare beneficiaries with Alzheimer's and other 
dementias, cost three times more than comparable beneficiaries 
without cognitive impairment. In the case of Medicaid, the 
ratio is nine times more. Again, you've heard reasons why this 
is true.
    But also we've heard today that there is cause for hope 
that better care could lead to better outcomes. The other side 
of what we face today is the nature of this disease; it has to 
be said for the record what a cruel disease this is. It is a 
terminal disease, it is a progressive disease. We have no cure 
for this disease, we have no prevention strategy to stop its 
onset or even a way to slow the underlying progression of the 
disease. It's the sixth leading cause of death today, and of 
the leading causes of death, it's the only one for which we can 
cite those facts. So again, we need to act, and we need to act 
urgently.
    In terms of what ought to be done, there's three major 
points I want to emphasize, here. The first I've already 
referenced, which is a comprehensive strategy to approach 
this--to address things like psychosocial interventions that 
we've heard about today.
    The second is in the area of research. I just want to make 
two quick points about that. The first is, often with research 
we think about what we ought to think about, which is 
biomedical research. We've also heard today from panelists 
about the important research that's funded through the NIH and 
other agencies that deals in other ways--non-pharmacologic--
with this, that are leading to outstanding results, and that 
too is an important cause for research investment.
    Also, as we look at this from a systems perspective, we 
realize that the importance of having effective interventions 
is what makes, in part, more effective care possible. Some of 
you may have heard Dr. Zerhouni, former Director of the NIH, 
talk about as a physician at John's Hopkins in the eighties, 
that looking at the HIV/AIDS crisis unfolding then they 
projected that soon all of their beds, or a large proportion, 
would be overwhelmed by the needs of caring for this 
population.
    Fortunately, as means of prevention were disseminated, and 
interventions were developed, these changed that picture. 
That's very much where we are right now from a care perspective 
as we look at an aging population, especially with Alzheimer's 
and dementias. That is the course we're on, if we don't develop 
these kinds of approaches and disseminate them quickly.
    Finally to go specifically to the thrust of this forum 
today, we must look at care practices. We've already heard 
today about what we think is an outstanding development this 
year in this foundational effort, which is a provision for 
cognitive impairment detection in the Medicare annual wellness 
visit. Much of what is discussed today is predicated on 
identifying these cases early and making sure we do what needs 
to be done.
    On that latter point, in this past year, in the Senate and 
in the House, a bill was introduced called the ``Health 
Outcomes Planning and Education for Alzheimer's Act.'' What 
this bill does is that it provides--once there is detection--
for a package of services, notation in the medical record, and 
care planning.
    We've heard reasons why this is very important. For 
instance, the reference earlier to self-reported of pain among 
those who are cognitively impaired. You need a notation of 
cognitive impairment to follow that person across different 
care settings to allow for care interventions to track those 
kinds of insights. In terms of care planning, we have also 
heard, amply today, about the many evidence-based programs that 
can be implemented when there's a mechanism to encourage and 
provide for that kind of care planning. From the Alzheimer's 
Association's perspective, we have worked to advance each stage 
of these processes.
    First of all, our chapters have often been partners with 
the national organization and partners with the development of 
the research evaluation, with the AoA, with the Veteran's 
Administration, with NIH, and with others to develop this 
evidence base. As protocols have been verified by evidence to 
be effective--and we've heard about some of those, again, 
today, we have worked to disseminate those in a variety of 
ways.
    In one set of interventions, we have spoken directly to 
families; those with the disease and caregivers. We reach them 
in whatever way is most appropriate, whether it's through our 
call center, as you've heard about earlier today, that's 
available every minute of the year. Whether it's online tools 
or whether it's in-person support--there are support groups and 
other training opportunities.
    Also, in terms of the training for professionals who 
provide care, we provide training, based again on the evidence 
of which we've heard today, to these care professionals--both 
in-person training and also online through video-based training 
and other mechanisms--and try to disseminate these insights as 
quickly as we can. Also, on that front, we have worked with 
partners to develop practice recommendations across a variety 
of care settings so that, again, what we have heard about today 
and what we have learned is applied widely, and as quickly as 
possible. Our challenge is--everybody's challenge is, of 
course, to continue the development we've had along these 
fronts to understand what ought to be done as quickly as 
possible, and then to work together to make sure that these 
insights are applied as quickly and widely as we can.
    So I thank the committee very much for this conversation 
today. I thank the panelists, and I look forward to a continued 
conversation with each of you about how to move forward. Thank 
you.
    [The prepared statement of Mr. Egge follows:]

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   STATEMENT OF ERIC J. HALL, PRESIDENT AND CEO, ALZHEIMER'S 
              FOUNDATION OF AMERICA, NEW YORK, NY

    Mr. Hall. Good afternoon, everyone. To Chairman Kohl, 
Ranking Member Corker, members of the committee, staff, and all 
of you, thank you so much for convening, for coming together 
for this forum, and for asking the Alzheimer's Foundation of 
America to provide comments.
    I am Eric J. Hall., I am the AFA's Founding President and 
Chief Executive Officer, and I am truly honored to be here 
today representing our membership and families we are caring 
for across the country.
    AFA was formed in February 2002, to provide optimal care 
and services to individuals confronting dementia, and to their 
caregivers and the families through member organizations 
dedicated to improving the quality of life. Today, our 
membership consists of more than 1400 organizations, including 
grassroots not-for-profit organizations, government agencies, 
public safety departments and long-term care communities. Our 
services include a hotline staffed by licensed social workers, 
educational materials, care advantage--a free, quarterly family 
caregiver magazine that reaches, right now, about a million 
readers--professional training programs, AFA Teens, which is an 
online web support and scholarship program, and National Memory 
Screening Day. We, as a Foundation, also provide grants to non-
profit service organizations, as well as respite grants to 
families in need.
    Advocacy is an important part of the AFA mission. AFA was 
the only national organization to support the Patient 
Protection and Affordable Care Act. We have also been active in 
efforts such as advising on the caregiver initiative for the 
White House Middle Class Task Force, doubling and making 
competitive the Federal appropriations available for the 
Missing Alzheimer's Disease Patient Alert Program. We played a 
leading role in the effort to include the detection of any 
cognitive impairment in the new annual Medicare wellness exam.
    AFA also organized a letter, signed by more than 100 
national and local organizations in support of the National 
Alzheimer's Project Act, and we are anxiously awaiting its 
final passage.
    It is a pleasure to hear the important work being done by 
the Administration on Aging regarding its Alzheimer's disease 
supportive services program. As Assistant Secretary Greenlee 
noted, however, Alzheimer's is a long disease, and such 
programs cannot just be simply a blip on the radar of the 
screen of care. They must be sustained, and after a continuum 
of services that families cycle through at each stage of the 
illness. The committee is uniquely positioned to encourage 
policymakers to keep the momentum going next year when the 
Older Americans Act and the Lifespan Respite Care Act are up 
for reauthorization.
    It is useful to spread the word about the success of 
caregiver initiatives, such as REACH, as described by Dr. Grady 
and Dr. Gitlin. Yet, it must be noted that Federal research 
funding for the National Institute of Aging, NIA, the lead NIH 
Institute on Alzheimer's, and co-founder of the REACH Program, 
is in dire straits. Out of each dollar appropriated to NIH, 
only 3.6 cents goes toward supporting the work of the NIA. AFA 
respectfully asks the committee to further explore the Federal 
investment in aging research, and to support increased 
resources for the NIA.
    However, family caregivers do not need to be a part of a 
big research study to get help right now. AFA has several 
resources to help family caregivers, including ``Your Time to 
Care,'' an educational DVD series that addresses specific care 
issues in the home setting. We would be glad to provide copies 
of these materials to members of the committee and to any other 
interested parties.
    On the topic of community-based models, Mr. Shook's 
overview of Silverado Senior Living was inspiring. I know 
through AFA's member organizations, that there are many 
effective models of care across the country; however, the cost 
of these types of care are not covered by Medicare, and many 
families simply cannot afford them.
    AFA supported The Class Act, which will eventually help 
relieve some of the burden of long-term care. The Senate also 
included a ``Sense of the Senate'' on long-term care in its 
health reform bill that pledged to address long-term care 
services and provide in a comprehensive way that guarantees 
elderly and disabled individuals the care they need. We urge 
the committee to highlight the need for continued resources to 
address long-term services and support.
    Dr. Kovach focused on staffing issues and dementia training 
in the nursing home setting, which AFA believes is particularly 
important, since CMS estimates that as many as 70 percent of 
all nursing home residents have some degree of cognitive 
impairment; nearly half have a diagnosis of Alzheimer's disease 
or other dementia. AFA was proud to work in coalition to 
support enactment of provisions of the Nursing Home 
Transparency and Improvement Act as part of health reform.
    Among its many positive reforms, the bill requires 
facilities to include dementia management and abuse prevention 
training as part of its pre-employment training. AFA believes 
that CMS should require that dementia training be integrated 
throughout nurse aide training and abuse prevention training.
    AFA offers two national programs that are specifically 
designed to raise the bar on dementia care in the United 
States--Dementia Care Professionals of America, DCPA, and 
Excellence in Care, EIC. DCPA is a division of AFA that offers 
practical training to healthcare professionals. Presently, it 
has trained over 5,000 individuals.
    EIC partners with care settings in the establishment of a 
nationwide standard of excellence in care for individuals with 
Alzheimer's disease or related dementias.
    The last issue of today's forum addressed the overuse of 
chemical restraints in nursing home settings. AFA agrees with 
California Advocates for Nursing Home Reform that there is a 
lot of work still to be done on staffing levels and education 
of nursing home professionals. We do want to note that there is 
an appropriate time and place for anti-psychotics in the 
nursing home setting, but only under proper training 
conditions, as well as strict supervision of dosage, monitoring 
of symptoms, and length of treatment. At the Alzheimer's 
Foundation of America, our strength over these years and our 
success has come from our collaboration. AFA looks forward to 
working with all of you here to address the issues raised in 
today's forum, and in the long term, to end the devastation 
caused by Alzheimer's disease.
    Thank you.
    [The prepared statement of Mr. Hall follows:]

[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    
    Ms. Montgomery. Well, thank you to all of our panelists. 
You can see that there's a wealth of information and expertise 
and research and practice here. I'm assuming that there is a 
wealth of expertise in the audience, as well. So, now is your 
turn.
    You have the opportunity to come to the microphone, which 
is right there in the center aisle and ask some questions. So, 
if you would like to do so, I encourage you to do that. For 
those of you who would like to come to the microphone, please 
state your name and your affiliation, so that we have it for 
the record. So, who's going to be the first bold person?
    While you're thinking, I'll start things off by addressing 
the anti-psychotic use issue. Pat McGinnis mentioned a proposal 
to include anti-psychotic use rates on ``Nursing Home 
Compare,'' which is an interesting idea. One potential downside 
of this is that it could create an incentive to encourage 
discharging people because of difficult behavior, as Dr. Kovach 
mentioned. So, I'm wondering how could we create benchmarks 
that encourage people to improve the standard of care, rather 
than to pass on the problem?
    Ms. McGinnis. We already include that information on our 
Web site in California. That information is already collected 
by CMS. It's on the Minimum Data Sheet (MDS) data; it is 
facility self-reported, so we don't even know if that's 
reliable--but when a facility reports that they've got 80 
percent of their residents on psychotropics or anti-psychotics, 
you tend to believe, if that's what they're reporting.
    We have all kinds of quality indicators, and we have all 
kinds of data that is collected by CMS, posted on ``Nursing 
Home Compare''--it seems like that would be one of them. But 
are you suggesting that nursing homes may start discharging 
people?
    Ms. Montgomery. Yes. That might be a possibility, so if we 
could create better benchmarks to avoid that problem, that 
would be worth thinking about. We don't have to do that right 
here.
    Ms. McGinnis. Yeah, OK. [Laughter.]
    Ms. Montgomery. All right.
    Ms. McGinnis. Yeah.
    Ms. Montgomery. I'll ask one more question before we turn 
to the person at the microphone, and that is about the cost-
effectiveness of the psychosocial interventions we've been 
talking about. They seem pretty overwhelmingly cost effective 
to those of us here today, and so I'm wondering, what ideas do 
you all have that would help us make the economic argument to 
those who fund programs, and in the medical community, that 
these interventions ought to be more widely considered for 
broad use?
    Mr. Shook. One of the approaches that should be taken is 
the reduction and utilization of medical-surgical services, the 
reduction in trips to emergency rooms. We measured that, and 
found we have a significant reduction of hospitalization for 
behavioral health by implementing these different tools--some 
of which do use psychotropic medications, but as I said, we 
reduced the use of those by more than 30 percent. But these 
other measures that have been discussed by the panelists here 
are very effective in reducing people's behaviors, keeping them 
out of behavioral health.
    But, you know, there are also tools that are available to 
keep people out of ERs. If an assisted living doesn't have a 
nurse available, having one on call or working with a hospice 
can help--71 percent of the people at Silverado, to 89 
percent--depending on the year you want to evaluate, die on 
hospice care. In nursing homes, it's about 3 percent. In 
assisted living generally, it is nowhere near enough.
    If you've got somebody with COPD and, late at night--any 
time of the day--you don't have medical support to assess that 
person, and they have a hard time breathing, what are you going 
to do as the operator? You're going to call 911 and send them 
to the ER. But they don't need to be there, they just need to 
have a cooperative arrangement with a good hospice company--
even if they don't have their own--that gets a nurse out there 
and addresses that problem with the physicians. It is easily 
taken care of right on the site, and you don't have the pain 
and suffering and inconvenience of the resident going to the 
nursing home. ERs do not want to see them, I guarantee you. The 
hospital, however, has to admit them to protect themselves from 
a tort point of view. So there are many different tools to 
reduce costs.
    We reduced the use of prescription medications from 10 to 
12 per resident to five and a half. That's a cost savings right 
there. Medicare is usually picking up that cost. There are many 
others, I'll let others speak.
    Dr. Grady. We funded a series of clinical trials, working 
with the elderly--in particular with chronic heart failure, 
congestive heart failure. That is one of the most treatment-
resistant groups that we have in our society, and it's also 
very common among the elderly--one of the most common 
disorders. That series of studies has a cost-effectiveness 
piece built into it, so that we can actually document how much 
money is saved. The components of that have been built into the 
health care reform bill, so there will be reimbursement for 
that by CMS all goes forward. This investigator is taking this 
into the community of Alzheimer's patients so that we will be 
able to show, for this group, how much the increase in quality 
of care is, as we've shown in this other group. So, hopefully 
that increase in quality of care will show in patients and also 
the cost effectiveness.
    Dr. Gitlin. With regard to the psychosocial, non-
pharmacologic approaches for people with dementia and family 
caregivers in the home, cost effectiveness measures have not 
traditionally been part of the randomized trial methodology and 
it's really rather recent that this has been understood as 
something that's very, very important. I think that what will 
be important, moving forward, is that there is funding at the 
NIH for these kinds of methodologies to be either supplemental 
to the randomized control trial, or that they be integrated 
within a randomized control trial. But, really, the history has 
been that we have, you know, two decades of caregiver support 
programs, and only very few have been evaluated from a cost 
perspective.
    Mr. Egge. I'd just like to underscore how important that is 
from a policy perspective, as you know full well, in driving 
that question, I'm sure, to do just what you've described, and 
Director Grady, what you've described. To build in these cost-
effective measures is, in the current context, one of the most 
effective tools we can have, then, to encourage the policy 
adoption that we need legislatively and by other means.
    Ms. Montgomery. All right, we'll go the microphone.
    Ms. Horton. I'm Kelly Horton, I'm a Health and Aging Policy 
Fellow working with Congresswoman Louise Slaughter. A speaker 
talked about training that then leads to reduced need for 
restricting the patient. It's of course very important to train 
people who work in nursing homes, and that has helped to reduce 
the need to physically restrict patients with Alzheimer's, but 
I'm also wondering was there a correlation, are they 
overmedicating them?
    Ms. McGinnis. I think I was talking about the restraint--
physical restraint reduction movement which, in fact, ended up 
reducing the use of physical restraints from 25 percent to less 
than 3 percent, and sometimes less than .1 percent in some of 
the States.
    Clearly there's been a substitute; we used to have a very 
low use of anti-psychotic drugs, and then it went up. With the 
Nursing Home Reform Act the use went down, and then it started 
rising again. So, yes, you probably can find a real, direct 
correlation, the reduction in physical restraints, with the 
increase in the use of anti-psychotics. I don't think that 
there's any question about that. Certainly in California, and 
from what I've seen, in the rest of the country as well. I see 
some other advocates shaking their heads yes, too.
    Anti-psychotics have become a substitute for adequate 
staffing in some instances. Anti-psychotics have also become a 
substitute for alternate interventions, as we've discussed 
today, no question about it.
    Ms. Montgomery. OK, next question?
    Dr. Dong. Thank you very much, my name is Xinqi Dong, I'm a 
Health and Aging Policy Fellow, and also a geriatrician. I 
particularly appreciate the comments made by Ms. McGinnis 
linking Alzheimer's disease and elder abuse an area that I'm 
very passionate about.
    My question is more toward the issue of culture in dealing 
with the Alzheimer's disease population. Amongst different 
cultures--and take Chinese culture, for example, the word 
dementia literally translates into the words ``catatonic,'' and 
``crazy.''
    There's a lot of cultural misbeliefs regarding what is 
Alzheimer's disease, what is dementia, and it's many believe 
it's really a mark of shame on the ancestry of the family when 
doctors review these types of conditions.
    So with screening, as a geriatrician, as someone working in 
the community, we face a lot of those barriers. So, I hope to 
seek your guidance as far as, where do you see this issue in 
the field dealing specifically with culture, linguistic 
barriers--not only the Asian population, but across other 
racial and ethnic populations as well?
    Ms. Montgomery. Anybody like to comment?
    Mr. Egge. I'll comment from one perspective, at least, 
which is that at the Alzheimer's Association, we've found it 
necessary to invest considerably in order to pursue our mission 
in translation services--to the linguistic point specifically--
but also broadly in cultural terms.
    So, you can see in our most recent edition of ``Facts and 
Figures: A Special Report,'' the differential impact that they 
have by different groups. So that has been a major emphasis of 
ours.
    There are also some other encouraging things: for instance, 
a recent Nobel Prize winner, from China, has been very open 
about talking about Alzheimer's disease, which is partly, I 
suspect, we need not only due to the outreach that we do 
proactively, but also due to those individuals courageous steps 
by individuals in terms of talking about this and making sure 
that others feel that it is a safe conversation to have and to 
really deal with the stigma.
    Of course, stigma is still an issue overall for our culture 
far too much with these conditions. I think you're right, that 
we have to work on that. It's very important.
    Mr. Hall. The Alzheimer's Foundation of America this year 
just put out and did National Memory Screening Day in Spanish 
for Latinos. We actually started by going to the consulates 
from various countries and asking them to work with us on 
educating us, and allowing our materials to be succinct and 
culturally sensitive, but also by asking their communities to 
come together.
    So, I think there are opportunities. There's no doubt that 
there is a lift required--but it is quite necessary. Your 
translation into ``crazy'' is something that applies also to 
the Latino population, as well. So coupled with immigration 
issues there this population specifically has enormous 
difficulties, and so that is not something that one 
organization is going to be able to do; it's probably something 
that we're all going to have to stand shoulder-to-shoulder to 
accomplish.
    Dr. Gitlin. Yes, I would like to say that your comment is 
very critical to ``REACH.'' The NIH-supported REACH initiative 
involved over 600 people with dementia who were white, African-
American, and Latino. We have a lot more work to do in terms of 
a showing the effectiveness of REACH, as well as other non-
pharmacologic approaches, in different groups, and I think 
that's very important as part of what we might call the 
translational effort. If we have a randomized trial with a more 
homogeneous group of individuals, what does that mean for a 
much more diverse population?
    Ms. Montgomery. Please?
    Ms. Comer. I'm Meryl Comer, I'm President of the Geoffrey 
Beene Foundation Alzheimer's Initiative, and I'm a member of Us 
Against Alzheimer's, I'm also on the Alzheimer's Association 
Board, but my comments to you are as a caregiver of 17 years, 
for both my husband and my mother. I want to thank you for your 
efforts on our behalf.
    But I want to pose a question to all of you. We've had this 
conversation for 25 years, with no action, with the same 
issues. I would like you to fast-forward and create a sense of 
urgency in how we manage a pending epidemic, with a baby boom 
generation beginning to turn 65 January 1 of next year. Now, 
apply the issues that you have just discussed--with great 
empathy and concern--and tell us how you would manage if it all 
overwhelmed you at the same time.
    Dr. Kovach. I think that on a national level, this is a 
call to action. It calls for a very bold move. It calls for us 
saying, ``There are problems, here, and we can do better.'' We 
have interventions that have been tested, and how are we going 
to get these implemented, how are we going to be monitoring 
more carefully and raise our expectations.
    Some of these are real caregiver issues and they come down 
to reimbursement and how much money is being put into the 
system right now to care for this population. We have a 
substantial amount of data that shows that if you increase the 
competence of the registered nurses who are in a nursing home, 
quality of care improves dramatically. It takes a national call 
to arms and an organized initiative.
    Ms. McGinnis. I would like to speak to that, too. My mother 
went into the hospital 4 weeks ago--my mother is blind, she's 
89 years old, and she could probably beat anybody here in 
``Jeopardy'' any day. [Laughter.]
    Even though she doesn't care for Alex too much. However, my 
mother went in for a broken hip. It's not real serious, but 
serious enough that she's going to be in rehab for awhile. 
Immediately, after she went into the hospital, they had given 
her Respardol, which is an anti-psychotic. My mother did not 
need that, they never asked my sisters--I have 5 sisters and a 
brother--never asked any one of us, and of course, within 2 
days we got her off of that.
    But what it shows is, it's just as a matter of course and 
that we need to take this seriously. It's baby boomers in 
California who are rising up, too. Baby boomers in California 
who are saying, ``You know, we're tired of this, we're not 
going to take it anymore. I want to know, I want nursing homes 
to be accountable. If they're using a lot of anti-psychotic 
drugs, I want to know why.
    If pharmacies and pharmaceutical companies are out there, 
using and issuing drugs and recommending their use--even though 
there are black-box warnings--they should be penalized, they 
should be sued. Those are some of the things--we have to look 
at all aspects. We have to look at advocacy, educating 
consumers, educating family members, we have to get our 
legislators to take this stuff seriously and say, ``You know, 
35 years, this is enough. Let's start doing something about 
it.''
    You're absolutely correct--I think baby boomers are going 
to be the ones that start questioning and saying, ``Nah, we're 
not going to do this. We're not going to take this.'' I don't 
think that we're adequately prepared, by any stretch of the 
imagination, but I'm saying, we are at least able to just say 
no, as Nancy Reagan used to say. [Laughter.]
    Ms. Comer. I will just validate that. I've been a caregiver 
for 17 years, because I knew that my husband would be 
overmedicated and restrained in a nursing home facility in 
1990, based on the current conditions. Having slept on the 
floor of one facility that would take us, I knew there was no 
care.
    So I applaud your efforts, Mr. Shook, around the quality of 
care, but you are dealing with the consequences--not the cause, 
often. It's often a fact, that the staffing ratios of 
caregivers to patients has a great deal to do with quality 
care, and training. But again, unless we marry the issue of 
research with care, and had the call for more basic research 
around the cause and finding some disease-modifying drug, we 
are in serious trouble. It is a national strategy that's 
needed. Thank you.
    Mr. Shook. I would like to comment on that, and I want to 
agree with you that we've got a tremendous crisis coming that 
we're not prepared to handle. One of the things that hasn't 
been discussed is we need to open up our thinking and change 
the financing mechanism of how we pay for care.
    Right now, if a family is able to supplement a Medicaid--
or, in California, Medi-Cal--service delivery, it's against the 
law. That's ridiculous. People should be able to provide 
additional funding if their loved one qualifies for Medicaid or 
Medi-Cal, and the family members have additional money, 
enabling them to move up from a nursing home that receives 
Medicaid or Medi-Cal rates which are commonly not providing as 
much staffing as is found in Silverado. We have one full-time 
equivalent per resident care ratio. Medicare, Medi-Cal, in any 
State, will not pay for that.
    If a family comes in with an additional $10, $20, $30 a 
day--which families can do--then that would give choice to 
consumers to be able to elevate their care to the private 
sector which, you know, we would get our care from, if we had a 
choice, that would put competition into long-term care that 
does not exist today. That would drive a lot more resources.
    Now, that doesn't take away the importance of education 
about the non-medication approaches to treatment, which are a 
huge opportunity. The book ``Silverado Story,'' is about 
teaching families and explaining to families, ``Don't let your 
loved ones sit in a wheelchair. Have them engaged, and don't 
accept what is commonly thought throughout the United States 
today as acceptable care for Alzheimer's.'' People don't know 
what they don't know. What we've heard about on this panel is 
news to much of the United States. When we went into Houston 
and took over four problem long-term care communities, I first 
did a satisfaction survey of the families. I thought they would 
say the care was terrible, and then after we took over, I 
thought they would say the care was great. From a business 
point of view, this is not a bad idea.
    So I went in and I surveyed, and they said the care was 
great. It was terrible. But they didn't know, because there it 
wasn't anything to compare it to. This shows that the message 
of education is huge; it's so important. You had the knowledge 
to know that your loved one might be overmedicated in that 
setting, and kept them out. Most of the United States does not 
know that, and it's our job to get that word out. That's one of 
the reasons I'm here, and I suspect the reason these people at 
the forum are not only here, but in the profession they're in.
    Ms. Love. My name is Karen Love and I'm the President for 
the Center for Excellence in Assisted Living. I am somebody who 
provided 20 years of care to people who have dementia. My dad 
had dementia and died of dementia, so it's near and dear to my 
heart.
    But my question to the panel is, if we keep doing the same 
old, same old, isn't that what we're going to get? I hear 
inspiration from you, but specifically there are a lot of 
things that are out there that aren't getting tied together. 
For example, there is community-based participatory research, 
which is a type of research that integrates policy, practice, 
and the research field. The invested stakeholders are all 
participating in the project from all of the stages. I think 
something like that would be a phenomenal project.
    You could get providers, such as Silverado, that are 
renowned for their dementia care, some of the researchers on 
the panel with their body of evidence and research, and 
policymakers. It's a type of research where we translate it 
into practice. Because that's the problem.
    We work a lot, for example, with the University of North 
Carolina at Chapel Hill. They have a wide and long history in 
demendtia care research--yet it never gets translated into the 
field. There is this enormous disconnect--a disconnect between 
having information inform policy.
    How do we pull all of these things together in a more 
effective role, so that we have better outcomes?
    Mr. Shook. Excellent point. I want to add that the Assisted 
Living Federation of America, the National Investor Conference, 
and the American Senior Housing Association are now open to 
communicating with universities and doing research with them 
within the settings where people are actually being served. 
Silverado started doing that research in conjunction with those 
settings, and that has been expanded to many other companies--
Brookdale's one of them, Emeritus--there's a variety of 
companies, and I know the CEOs are very active and interested 
in partnering with the universities to do research. That is how 
you get it in the field.
    Dr. Gitlin. I would just like to add that I think our 
biggest challenge is taking the evidence that we do have--we 
certainly have to create more evidence--but taking the evidence 
that we do have and translating it. Some of the work that we 
have had funded from the Administration on Aging, as you heard 
from Assistant Secretary Greenlee, has been to translate some 
of the evidence-based programs funded by NIA, for example, and 
NINR, into the community. The lesson learned from that is that 
that you need money to translate, because the team is very 
different, just as you're suggesting. If you have evidence from 
the randomized trial and then you want to implant it in a 
treatment and a practice setting, the team is very, very 
different, and it takes time and effort and funding to support 
that, and you learn new lessons. But it's something that we 
have to do.
    I also want to say that most other developed countries have 
made dementia a No. 1 health priority. That has meant that they 
have identified funding sources to support the widespread 
training of health and human service professionals, and have 
also supported translation of evidence-based programs developed 
all around the world, and have also supported an increase in 
funding for not only a cure, but also for more enhanced 
psychosocial and environmental interventions. So we could take 
the lead from our partners, because they have made dementia a 
priority, and they're making some progress with regard to some 
of the points that you raise.
    Ms. Love. Well, in CBPR, it's not a separate step to 
translate the research, it's accommodated in that.
    Dr. Grady. Yes. We are actually funding a fair amount of 
CBPR, now. We're finding problems that are identified by the 
community and which are brought to us, and then we have vested 
partners in the community to implement it.
    But it does take a partnership, as Dr. Gitlin said, and I 
think that part of the answer to your question is that's why 
we're here today, because we really do need more exposure about 
this, to get the word out, and it does need a national 
presence. It is starting to happen, basically we're facing a 
train wreck. We're facing the increasing age of the 
population--not all of whom have dementia, but a lot of whom 
do--and the problems that we're facing in this population are 
mirrored elsewhere. We have a new law out, and more people will 
be covered, and yet there are many people who do not receive 
care. We have a growing diversity in our populations; minority 
populations are quickly becoming majority populations, and we 
don't have a lot of research to address those needs. We're 
working on it, but we're not there yet.
    All of these factors are converging in a way that demand 
attention. So, I really think the good news is that we have a 
lot of information that we could be implementing, but the 
urgency, and the tempo is really increasing. Those of us in 
this field have this sense of heading in a very fast train 
toward the end of a cliff and so I think that we are, by 
circumstances, forced to coordinate our efforts and so this is 
a very national approach.
    Ms. Montgomery. I think we have time for two more quick 
questions and then we'll wrap it up and thank you all.
    Dr. Levy-Storms. Hello, my name is Lene Levy-Storms and I'm 
a professor, and a Health and Aging Policy Fellow from UCLA. My 
question is directed particularly at Mr. Eric Hall and Mr. 
Loren Shook. It seems like today we've spoken about caregivers 
of persons with dementia in the community. We haven't really 
mentioned or spoken about family members for persons with 
dementia who are institutionalized.
    Mr. Hall, could you address any programs that your 
organization supports for those family caregivers? Also, Mr. 
Shook, could you address your knowledge of what issues family 
caregivers face once they do institutionalize their loved one?
    Mr. Hall. There's no doubt that support is necessary even 
after institutionalization. The emotional burden to a family is 
still very real. I wanted to say something along these lines, 
as well. We're sitting here and we're talking about all of the 
things that need to get done--and there is no doubt that they 
do. I have had the honor of traveling most of the country and 
seeing organizations all over who are providing incredible care 
and support right now. There's an enormous footprint already 
present in our country. There are dedicated professionals, all 
over, who are giving their life's blood for this cause.
    So, I simply just want to make sure that we posit that a 
lot more is needed. What we have right now is not enough, 
there's no doubt. But I wouldn't want anyone listening to us 
here thinking that we're not aware of all of the organizations 
all over the country who are providing care, and who are doing 
incredible jobs, and are seeing an increase in people coming to 
their door and less financial resources. They need a lot more 
support.
    As far as support groups for these individuals, the family 
members, or sensitivity on behalf of nursing homes and assisted 
livings, across the country, I have found organizations who are 
stepping in and who are helping in those regards.
    Another thing about the Alzheimer's Foundation of America, 
when we fund programs and services and we go through a very 
rigid review of grants, and then when we fund, we ask for a 
response of what the money has funded, and then the program 
that was funded, if successful, is made available so that other 
organizations can share. I have to tell you, the network that 
we have, of the 1400 organizations people don't care if you're 
a county away, or if you're the country away, on the East 
Coast. If an organization has a program that's really very 
effective, they're willing to share that with others. I think 
it's one of the things that we have found, is that a lot of 
it's about the research, but it's also about--this is how you 
do it. This is exactly how you fulfill this, this is exactly 
how you follow through, this is how you make this happen. I 
know that, organizations are hungry to provide those type of 
necessary services to their families.
    Mr. Shook. As with all of the questions, this is an 
excellent question, and I'll be as brief as I can.
    But, what we do at Silverado, is first of all, we relieve 
the burden from the family. We take the husband, the wife, the 
sister, the daughter, the son, and we take the burden of care 
giving away from them and let them return to be the loving 
wife, the loving daughter. We relieve them of their stress in 
terms of being able to count on us to do the right thing in 
caring for their loved one, so that they can return to more 
normalcy in their own life. We realize that the guilt is 
intense when we move people in. So, we will take pictures of 
their loved one the next day, when they're in an activity, 
seeing them smiling and engaged in an activity and email it to 
them, much as you might have experienced if you have children, 
what happens at kindergarten, when you know, they send you back 
a message that your child that you've given up to the school 
is, indeed, in good hands. Because sometimes family members--
residents have a hard time transitioning when the family member 
is there, it's like, ``Take me home, take me home,'' and then 
when they go away, they're laughing and having a great time.
    So, when you have that kind of scenario, you try to give 
the family other proof that they're having a good time. But the 
transition happens fairly quickly.
    We also put the family in touch with other families so they 
can have socially supportive time together with other people 
who have the same trouble in an enjoyable setting. We take them 
out for a lunch or dinner or something like that. We provide 
them with a constant education about what's going on.
    We talk to them in the beginning about end-of-life 
concerns, and how do you want to handle end-of-life? This is a 
difficult problem that frequently is not covered in our 
culture, and end-of-life comes and people don't know what to do 
about it, and then they go off treating people who don't need 
treatment. We get the DNR do not resucitate order you know, put 
together, so you're not sending someone off for resuscitation 
and incurring all of that trauma.
    Children are also invited to come--the family's children. 
My father had dementia in the eighties, and the only thing I 
could find was a nursing home. My mother had Parkinson's, which 
I subsequently cared for at home--it was Silverado's Home Care, 
and she was the first patient, in fact. But the nursing home 
did not want to see my children, that was really crystal clear. 
My dad loved them, and yet they did not want to see them in 
there. So, at Silverado we create an environment where children 
are welcome. We have playgrounds, we have pets, we have several 
hundreds pets, actually. We have things that engage children. 
The families eat for free. We want to re-engage families in a 
disease that disengages families, oftentimes, and that's one of 
our core values, so I don't want to charge you five bucks or 
eight bucks or whatever it is for dinner, and chase around a 
charge slip, and have my staff do all of that nonsense. Please 
come and eat for free and bring all of your family's members 
with you. Thanksgiving can get pretty large at Silverado--four 
and five hundred people is not uncommon. We have private dining 
rooms--you want to have a party, let's do it.
    We connect families. There was an article written in the 
paper about Valentine's where a lady whose husband is 57 and 
had early stage Lewy body dementia, wound up in our community 
and, you know, she describes it as the best Valentine's Day 
they ever had, because the staff took into consideration that 
it was also a birthday, and got the husband set up with the 
birthday gift, and a party. The dinner in our private dining 
room was as though he presented it himself. I need that kind of 
help in my own home, by the way. [Laughter.]
    But those are just some of the things we do. We have many 
parties, and families are always invited. A lot of our 
communities are considered rocking places--they are just 
happening. Nothing dull, nothing boring. That's part of what 
you need to get rid of in your minds about what's OK 
nationally, it is not ``over-stimulating'' for people with 
dementia to have a good time.
    Ms. McGinnis. I just remind folks, too, that family 
councils in nursing homes are some of the most important groups 
that you can possibly have for family members to get the kind 
of support and validation, and all of that that they need. You 
can go on our Web site and get a free, ``How to Organize a 
Family Council,'' and also, of course, from ``Consumer Voice,'' 
right here in Washington. Every nursing home should have an 
independent family council.
    Ms. Montgomery. OK. Final question.
    Dr. Mudannayake. Good afternoon. My name is Dr. Louis 
Mudannayake, I'm a geriatrician, internist, and hospice and 
palliative care specialist. I work out of Brooklyn in New York, 
and in the health care system that I work out of, which are 
nursing homes, we've reduced anti-psychotics by over 300 
percent and gone down from average amount of drugs consumed per 
resident from 9 down to about 4.
    The question I have was first raised by Lucette Lagnado on 
the front page of the ``Wall Street Journal,'' in 2007, how can 
we change the culture when the Federal Government reimburses 
more readily for pills than people? It's a very difficult 
question, and I know Patricia McGinnis answered it in one 
respect by having consent forms, say, for the prescription of 
anti-psychotics, but that brings along its own set of 
problems--tort reform, and something I've been campaigning 
against, and certainly taught, one of the things that drives 
healthcare costs up.
    So, is there any other way we could convince people that we 
really need, you know, to pay people more, rather than depend 
on medications that often just don't work and can do harm?
    Ms. McGinnis. Yes, I absolutely agree. I'm not a doctor but 
as a non-professional health professional, I would say, if you 
demonstrate the high cost of poor care, we used to be able to 
do that, you know, before we had Medicare Part D, we could 
actually get the amount of money that the State of California 
spent on anti-psychotic and psychotropic and all of those kinds 
of drugs--if you show the high cost of poor care--there are 
more falls, more problems, more pneumonia, there are is more 
admissions to acute care hospitals because of the use of anti-
psychotic drugs; if you could track that, and show that it's 
going to cost more to drug people up than to provide them with 
decent care, then I think that we're going to get the Federal 
Government to follow. At least that's my opinion.
    Dr. Kovach. This issue is an example of how much cultural 
attitudes have consequences. We live in a society that fears 
death, does all sorts of things to avoid death, and we think 
there's a magic bullet that's going to cure everything and 
stave off death. Then when we have a family member that has the 
natural and the inevitable--a chronic illness that is going to 
eventually lead to their death, and we act in all sorts of ways 
that are inappropriate. We want care that is futile, we want 
you to do something. Prescribers just feel like, ``I have to do 
something for you that's going to make you happy.'' Because we 
have been trained through television commercials, and other 
messages, that, ``If you take this pill, you're going to get 
better.'' Physicians have a lot of pressure to write those 
prescriptions and do something.
    In this country we need to get more comfortable with the 
notion of end-of-life and illness. I`m really happy when I see 
Michael J. Fox showing his tremors. When Christopher Reeve 
would get out there and show himself. You'll go to a restaurant 
and see somebody who has a disability and people are offended 
by that witnessing the symptoms while dining. We have to show 
that this is a normal part of life. That becoming ill and dying 
is a normal part, of the life cycle, so it's a major issue of 
education, cultural values.
    Mr. Shook. We need to shift the focus from paying for 
treatment, and paying instead for results. Right now our whole 
system is set up for the number of incidents that we pay for 
that have been done to you. It doesn't mean that it's going to 
make you any better. At the end of life, there's nothing you're 
going to be able to do to prevent the end of life, and yet our 
culture is so blind to dealing with this. If there's one thing 
we know for sure, it's that we're all going to die, but we 
don't want to talk about it.
    All of these interventions that are taken at the end of 
life, we avoid at Silverado by having those conversations, and 
71 to 87 percent of the people pass away on hospice care. If 
every long-term care community had a standard of just doing 
something like that, there would be a tremendous reduction in 
cost. This is much bigger than the use of psychotropic 
medications.
    But this is where the big money's at--are people going into 
surgery to fix that mitral valve? --My mother had a mitral 
valve failure at the end of her life. She also had Parkinson's, 
was blind in one eye, taking care of my dad and experiencing 
great stress there, another lesion. Did we go in and fix it? 
No, we had a conversation. I sat with her surgeon and said, 
``What--what does this really mean? We can fix that, but then 
what's the risk of significant dementia just from the 
anesthesia? Where's your life going?
    At Silverado, we believe in a good death, and a good death 
brings the family together. It's a magical moment, it's a way 
to change people's lives, and I can give you story after story 
after story of how it changes people's lives who remain. It's a 
growth in life for the person passing away and preparing to 
move on to the next stage for them. We, as a culture, have got 
to embrace that and understand that, and it's not a bad thing.
    Dr. Mudannayake. Thank you.
    Dr. Grady. I would be remiss if I didn't mention that we 
are the lead at NIH for end-of-life issues. One of the major 
things that we deal with is, what do we call it? The resistance 
is such that we can't use that term, and if we use ``palliative 
care,'' people are sensitive to that as well. So, we are now 
addressing it as with issues related to life-limiting and life-
threatening illnesses.
    But it is--but the biggest piece of that is about 
communication and changing the focus from focus on cure to 
focus on care.
    Thank you.
    Ms. Montgomery. I think that's a great way to end this 
forum; I think it's been extraordinary. I want to thank 
everyone here today, the panelists, everyone in the audience, 
and especially my colleague Neil Thacker without whom this 
forum would never have been possible.
    So, thank you again.
    [Whereupon, at 3:22 p.m., the hearing was adjourned.]





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