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UNTIL THERE’S A CURE: HOW TO HELP 

ALZHEIMER’S PATIENTS AND FAMILIES NOW 

FORUM 

BEFORE THE

SPECIAL COMMITTEE ON AGING 

UNITED STATES SENATE 

ONE HUNDRED ELEVENTH CONGRESS 

SECOND SESSION 

WASHINGTON, DC 

DECEMBER 8, 2010 

Serial No. 111–26 

Printed for the use of the Special Committee on Aging 

( 

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

SPECIAL COMMITTEE ON AGING 

HERB KOHL, Wisconsin, Chairman 

RON WYDEN, Oregon 

BLANCHE L. LINCOLN, Arkansas 

EVAN BAYH, Indiana 

BILL NELSON, Florida 

ROBERT P. CASEY, Jr., Pennsylvania 

CLAIRE McCASKILL, Missouri 

SHELDON WHITEHOUSE, Rhode Island 

MARK UDALL, Colorado 

KIRSTEN GILLIBRAND, New York 

MICHAEL BENNET, Colorado 

ARLEN SPECTER, Pennsylvania 

AL FRANKEN, Minnesota 

BOB CORKER, Tennessee 

RICHARD SHELBY, Alabama 

SUSAN COLLINS, Maine 

GEORGE LeMIEUX, FLORIDA 

ORRIN HATCH, Utah 

SAM BROWNBACK, Kansas 

LINDSEY GRAHAM, South Carolina 

SAXBY CHAMBLISS, Georgia 

DEBRA WHITMAN, Majority Staff Director 

MICHAEL BASSETT, Ranking Member Staff Director 

(II) 

C O N T E N T S 

Page 

Opening Statement of Senator Herb Kohl, Chairman .......................................... 1 

Opening Statement of Senator Bob Corker, Ranking Member ............................ 2 

PANEL I 

Statement of Kathy Greenlee, Assistant Secretary, Administration on Aging, 

Washington, DC ................................................................................................... 3 

Statement of Patricia A. Grady, Ph.D., R.N., F.A.A.N., Director, National 

Institute of Nursing Research, Bethesda, MD ................................................... 15 

PANEL II 

Statement of Loren Shook, Chairman, President and CEO, Silverado Senior 

Living, on Behalf of the Assisted Living Federation of America, Irvine, 

CA .......................................................................................................................... 31

Statement of Laura N. Gitlin, Ph.D., Director, Jefferson Center for Applied 

Research on Aging and Health, Thomas Jefferson University, Philadelphia, 

PA .......................................................................................................................... 43

Statement of Christine R. Kovach, Ph.D., R.N., F.A.A.N., Professor and Methods Core Director, College of Nursing and Self-Management Science Center, 

University of Wisconsin-Milwaukee, Milwaukee, WI ........................................ 59 

Statement of Patricia L. McGinnis, Executive Director, California Advocates 

for Nursing Home Reform, San Francisco, CA .................................................. 72 

Statement of Robert Egge, Vice President, Public Policy and Advocacy, Alzheimer’s Association, Washington, DC ............................................................... 82 

Statement of Eric J. Hall, President and CEO, Alzheimer’s Foundation of 

America, New York, NY ...................................................................................... 91 

APPENDIX 

Additional Information from Loren Shook ............................................................ 111 

Additional Information from Laura Gitlin, Thomas Jefferson University .......... 133 

Statement by Speaker Newt Gingrich ................................................................... 154 

Testimony from Richard P. Grimes, CEO and President Assisted Living Federation of America ................................................................................................ 156 

Statement submitted by Center for Medicare Advocacy ...................................... 162 

Statement from Michael D. Shmerling, of Abe’s Garden ..................................... 170 

Information from Experience Corpos ..................................................................... 172 

Information from Linda Nichols ............................................................................. 193 

Statement from Dr. Louis Mudannayake, MD, CMD ........................................... 201 

Information from Geropsychiatric Nursing Collaborative (GPNC) ..................... 202 

Information from Mary S. Mittleman, Dr. P.H. .................................................... 205 

(III) 

(1) 

UNTIL THERE’S A CURE: HOW TO HELP 

ALZHEIMER’S PATIENTS AND FAMILIES NOW 

WEDNESDAY, DECEMBER 8, 2010 

U.S. SENATE, SPECIAL COMMITTEE ON AGING, Washington, DC. 

The committee met, pursuant to notice, at 1 p.m. in room G–50, 

Dirksen Senate office Building, Hon. Herb Kohl (Chairman of the 

Committee) presiding. 

Present: Senators Kohl and Corker. 

OPENING STATEMENT OF SENATOR HERB KOHL, CHAIRMAN 

The CHAIRMAN. Good afternoon, everybody. We welcome you here 

today. We especially would like to welcome our distinguished participants for being here with us. We are lucky to have Assistant 

Secretary Kathy Greenlee and Director Patricia Grady, as well as 

several other experts and advocates. We are happy to be hearing 

from them and we encourage all of you here today to participate 

in our activity. 

Senator Corker and I are holding this forum so that we can exchange best ideas about how to provide the best care to the 5.3 million Americans suffering from Alzheimer’s disease. This is a huge 

concern for the much larger number of family members, relatives, 

and friends whose lives are also affected. These caregivers do not 

have the luxury of waiting for a cure. They need support now. 

I do feel strongly that we will find a cure and I congratulate the 

Senate HELP Committee for approving the National Alzheimer’s 

Project Act last week, which will speed up the research process. 

But until there is a cure, we must focus on improving the services 

for people living with Alzheimer’s disease. 

Today’s forum will highlight the best methods of care that can 

take place in a variety of settings, including nursing homes, assisted living facilities, and in the home. The right interventions can 

greatly improve the quality of life for people living with Alzheimer’s disease as well as their families. We believe these best 

practices should be put to use by medical personnel, long-term care 

staff, and family caregivers. 

In a few moments, we will hear from the Administration on 

Aging, the National Institute of Nursing Research, the Alzheimer’s 

Association, and the Alzheimer’s Foundation of America, about how 

they are spreading the word about models of new dementia care. 

They will talk to us about what type of training really works, who 

needs to be trained, and how this can be done in a cost effective 

manner. 

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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 multistakeholder 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 

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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 communitybased services that currently exist so that they can better support 

4 

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 disVerDate Nov 24 2008 14:17 Mar 04, 2011 Jkt 000000 PO 00000 Frm 00008 Fmt 6633 Sfmt 6633 H:\DOCS\64225.TXT SAG PsN: JOYCE
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ease 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 

6 

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 evidencebased 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:] 

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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 

16 

has the potential to improve the quality of life and decrease costs 

of care. 

A third project currently underway is one testing an evidencebased, 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. 

17 

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. Cofunded 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 

18 

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:] 

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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 

28 

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 

29 

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, 

30 

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. 

31 

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. 

32 

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 

33 

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 conVerDate Nov 24 2008 14:17 Mar 04, 2011 Jkt 000000 PO 00000 Frm 00037 Fmt 6633 Sfmt 6633 H:\DOCS\64225.TXT SAG PsN: JOYCE
34 

tinued. He was committed to improving her math skills. Lisa, excellent in the subject already, in truth needed no additional practice. But every time she reached 200 without an error, Walter 

would congratulate her and the pride in his voice always made her 

happy. 

Later that day, Lisa took Walter’s hand and put it on her face. 

She asked Walter, ‘‘am I beautiful?’’ Walter replied, ‘‘you are the 

most beautiful little girl there ever was. Your hair has a soft sheen 

that reflects the sun. Your complexion would be the envy of little 

girls everywhere. Believe me. You are a gift from God.’’ Lisa smiled 

and bowed her head and they both sat quietly for a while. 

Walter was 99 years old. His advancing memory impairment had 

reduced the size of his brain by one-third, according to scientists, 

who say the actions of persons in his condition are not guided by 

intention or comprehension. But Walter knew exactly what to do 

for Lisa. Lisa was his purpose. 

World-class health care is made up of four things: the physical, 

the science behind it; the psychological; the family; and the spiritual. Throughout Silverado’s model of care all four of these essential elements are served resulting in measurable clinical results 

that are truly remarkable like the story about Walter and Lisa and 

Edith. 

It has been an honor to present to you today, Chairman Kohl and 

Ranking Member Corker and members of the committee. Thank 

you for your time and attention. 

[The prepared statement of Mr. Shook follows:] 

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STATEMENT OF LAURA N. GITLIN, PH.D., DIRECTOR, JEFFERSON CENTER FOR APPLIED RESEARCH ON AGING AND 

HEALTH, THOMAS JEFFERSON UNIVERSITY, PHILADELPHIA, 

PA 

Dr. GITLIN. Good afternoon. I would like to thank Senators Kohl 

and Corker and members of the committee for inviting me to 

present at this very critical and important forum. 

I would like to start by telling you about Millie. Shortly after her 

husband passed away, Millie became increasingly forgetful and delusional. With time, however, Millie’s condition worsened, and she 

was finally diagnosed with dementia. Millie moved in with her 

daughter Diane and her family. Diane had to stop working to care 

for her mother, and she quickly found that she had to manage 

many complications of the disease beyond that of memory loss. 

Millie constantly followed Diane around the house. She repeatedly 

asked questions such as what day and time it was and where 

Diane was going. She resisted bathing and appeared fearful of the 

tub, and she roamed the house in the middle of the night, sometimes trying to leave. 

Diane thought that her mom also might be in pain due to arthritis, but she could not gauge her pain as Millie had difficulties communicating, a common factor in dementia. 

Diane felt guilty that she was not doing enough for her mom. 

She became increasingly distressed due to her lack of sleep and 

having to juggle the care of her mother with that of her family. Her 

health in turn began to suffer and she missed her own doctor appointments. 

Millie’s story is not unusual. She is one of the over 5 million people in the United States who suffer from Alzheimer’s disease or a 

related disorder, the majority of whom live at home with a family 

member or alone in the community. This is also the story of the 

over 11 million family members who, like Diane, are caring for 

their family members with dementia. Although each situation is 

unique, family caregivers share similar challenges and experiences. 

They are often exhausted, frustrated, saddened, and unsure how to 

manage functional dependence and troublesome behaviors such as 

wandering, agitation, or waking up at night such as in the case of 

Millie, which are common and can occur throughout the disease 

process. They also must make very difficult decisions with little to 

no help or formal support. 

Although we know that a cure for dementia is not in sight now 

or in the near future, there are treatments available right now that 

could help Millie and Diane. Most families, however, do not hear 

about them. These therapies—called non-pharmacologic treatments—do not come in a pill. Instead, they may involve personal 

counseling, education, hands-on-skills training, home modification, 

exercise, or simplifying activities. These treatments, as you have 

heard from the morning panel, are based on over 2 decades of evidence from randomized controlled trials funded by the NIH and the 

Alzheimer’s Association. 

One example of an effective intervention is Project COPE. This 

was developed and tested recently by myself and my research team 

at Thomas Jefferson University. In a randomized trial with 237 

families, we recently reported in the ‘‘Journal of the American MedVerDate Nov 24 2008 14:17 Mar 04, 2011 Jkt 000000 PO 00000 Frm 00047 Fmt 6633 Sfmt 6633 H:\DOCS\64225.TXT SAG PsN: JOYCE
44 

ical 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 

45 

unmanaged health problems. Yet, our research by me and that of 

numerous other scientists that Dr. Grady spoke about suggests 

that non-pharmacologic approaches can address all of these unmet 

critical needs. 

As Dr. Covinsky stated in an editorial in the ‘‘Annals of Internal 

Medicine’’ in response to the positive caregiver outcomes of the 

NIH REACH initiative, if these interventions were drugs, it is hard 

to believe that they would not be on the fast track to approval. The 

magnitude of benefit and the quality of evidence supporting these 

interventions considerably exceed those of currently approved pharmacologic therapies for dementia. 

There is also an economic argument to be made for better dementia and caregiver supportive programs. As we have heard, in 2009 

nearly 11 million unpaid caregivers provided an estimated 12.5 billion hours of care to people with dementia, valued at nearly $144 

billion. Our country cannot afford the consequences of family caregivers becoming burnt out or too sick to carry on. 

Non-pharmacologic therapies may save more than they cost. 

Peer-reviewed studies have shown, for example, that the ‘‘NYU 

Caregiver Intervention’’ of counseling and ongoing caregiver support delayed nursing home placement by an average of 557 days, 

as was spoken about in the earlier panel. This could mean a savings of $100,000 per patient. 

An occupational therapy activity program we developed and tested at Thomas Jefferson University not only radically reduced behavioral disturbances, but it cost an average of $941 per family and 

was found to be cost effective. It saved caregivers up to 5 hours a 

day, at a cost of only $2.37 per day. The cost of drug treatment is 

approximately $5 per day, or $1,825 per year. 

Despite the promise of non-pharmacologic approaches, there are 

many challenges. Chiefly, we lack a national strategy for developing a new standard of care for individuals with dementia and 

their families that includes comprehensive and ongoing supportive, 

proven non-pharmacologic approaches. A national strategy might 

include funding large-scale demonstration projects that integrate 

the most promising non-pharmacologic approaches to date, and 

widespread training of health and human service professionals in 

these proven dementia care and caregiver supportive programs. It 

might include expanding our current reimbursement structures to 

allow for the provision of existing proven caregiver and dementia 

care programs at home. It might include expanding funding to support implementation of proven programs into a variety of practice 

settings, including home care, hospital discharge services, care 

management services, and rehabilitation services—all places where 

dementia patients are found. 

I urge the Committee to move forward with the strategic vision 

for enabling non-pharmacologic strategies to become part of the 

standard of care that is available to all individuals with dementia 

and their family members in order to address one of the most devastating diseases of our time, and which soon will be an epidemic. 

Thank you. 

[The prepared statement of Dr. Gitlin follows:] 

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STATEMENT OF CHRISTINE R. KOVACH, PH.D., R.N., F.A.A.N., 

PROFESSOR AND METHODS CORE DIRECTOR, COLLEGE OF 

NURSING AND SELF-MANAGEMENT SCIENCE CENTER, UNIVERSITY OF WISCONSIN-MILWAUKEE, MILWAUKEE, WI 

Dr. KOVACH. Good afternoon. In my time with you this afternoon, 

I will be talking about nursing home care, posing a few of the problems and some solutions. Because 50 to 75 percent of nursing home 

residents have dementia, the topic of nursing home quality of care 

is particularly relevant for this population. 

The needs of nursing home residents with dementia are often left 

unmet because staff do not know how to interpret dementia behaviors, complete a comprehensive assessment, or intervene to meet 

needs. In a recent 6-month period, the Milwaukee Police Department was called 386 times to nursing homes. Many of these calls 

were for behavioral issues. Commonly the individual is restrained 

and handcuffed in order for law enforcement officials to transport 

him or her. A ‘‘Chapter 51’’ petition is initiated so the person can 

be involuntarily committed to a psychiatric facility. These transfers 

in and of themselves create trauma for the individual, and can 

worsen health and behavior. In too many cases, emergency detention is being used as a vehicle to involuntarily medicate people 

with dementia and to discharge or get them out of the nursing 

home, despite the fact that the FDA has issued a black box warning against such use. This should not be happening. We can do better. 

We have tested an assessment and treatment protocol called the 

‘‘Serial Trial Intervention’’ in two randomized controlled trials 

funded by NIH, and the intervention was found to be highly effective in decreasing agitated behaviors, discomfort, and comorbid 

problems. However, widespread diffusion of this intervention into 

practice, particularly in poor-performing homes, will not be farreaching 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 

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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 dayand-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 

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agement 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 homelike; 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, 

73 

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 

74 

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 antipsychotic 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 

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logic 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 offlabel 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 

83 

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. 

84 

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 comVerDate Nov 24 2008 14:17 Mar 04, 2011 Jkt 000000 PO 00000 Frm 00095 Fmt 6633 Sfmt 6633 H:\DOCS\64225.TXT SAG PsN: JOYCE
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mittee 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 

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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 antipsychotic 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 

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able, 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, 

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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. 

101 

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, AfricanAmerican, 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 

102 

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 

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103 

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 

104 

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. 

105 

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. 

106 

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 

107 

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. 

108 

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, 

109 

another lesion. Did we go in and fix it? No, we had a conversation. 

I sat with her surgeon and said, ‘‘What—what does this really 

mean? We can fix that, but then what’s the risk of significant dementia just from the anesthesia? Where’s your life going? 

At Silverado, we believe in a good death, and a good death brings 

the family together. It’s a magical moment, it’s a way to change 

people’s lives, and I can give you story after story after story of how 

it changes people’s lives who remain. It’s a growth in life for the 

person passing away and preparing to move on to the next stage 

for them. We, as a culture, have got to embrace that and understand that, and it’s not a bad thing. 

Dr. MUDANNAYAKE. Thank you. 

Dr. GRADY. I would be remiss if I didn’t mention that we are the 

lead at NIH for end-of-life issues. One of the major things that we 

deal with is, what do we call it? The resistance is such that we 

can’t use that term, and if we use ‘‘palliative care,’’ people are sensitive to that as well. So, we are now addressing it as with issues 

related to life-limiting and life-threatening illnesses. 

But it is—but the biggest piece of that is about communication 

and changing the focus from focus on cure to focus on care. 

Thank you. 

Ms. MONTGOMERY. I think that’s a great way to end this forum; 

I think it’s been extraordinary. I want to thank everyone here 

today, the panelists, everyone in the audience, and especially my 

colleague Neil Thacker without whom this forum would never have 

been possible. 

So, thank you again. 

[Whereupon, at 3:22 p.m., the hearing was adjourned.] 

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