[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
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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
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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
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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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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:]
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
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:]
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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.]
A P P E N D I X
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