Alzheimer's Association Launches TrialMatch™ – First-of-its-Kind Clinical Trials Matching Service in Alzheimer's

The Alzheimer's Association announced today the launch of Alzheimer's Association TrialMatch™, a confidential and free interactive tool that provides comprehensive clinical trial information and an individualized trial matching service for people with Alzheimer's disease and related dementias. The Internet (www.alz.org/trialmatch) and phone-based (800-272-3900) service debuted during the Alzheimer's Association International Conference on Alzheimer's Disease 2010 (AAICAD 2010) in Honolulu, HI.

There are as many as 5.3 million Americans living with the Alzheimer's and every 70 seconds someone in America develops the disease, according to the Association's 2010 Alzheimer's Disease Facts and Figures. This year, there will be one half million new cases of Alzheimer's; in 2050, there will be nearly a million new cases annually.

"Alzheimer's disease is clearly the #1 public health challenge of the 21st century and research is the only way to solve this problem," said William Thies, PhD, Chief Medical and Scientific Officer at the Alzheimer's Association.

Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of Alzheimer's treatments, perhaps second only to lack of funding.

"If patients are not enrolling in trials, there can be no advances in diagnosis, treatment and prevention, making the lack of study participants a significant public health issue," Thies said. "Alzheimer's Association TrialMatch provides a first-of-its-kind service in Alzheimer's by delivering a user-friendly and individualized guide to clinical trials for people with Alzheimer's, their healthcare professionals, caregivers and healthy volunteers."

More than 100 clinical studies in Alzheimer's and dementia are currently taking place and dozens more experimental compounds are moving from the laboratory to clinical testing. For people with Alzheimer's and their caregivers, clinical trials present an opportunity to play a more active role in their own treatment – ultimately contributing to scientific discovery and benefiting future generations.

About Alzheimer's Association TrialMatch
Alzheimer's Association TrialMatch is designed to be easy to use for people with Alzheimer's, with web and phone support, specially trained staff, and tools developed with input from people with Alzheimer's.

The strength of this Web- and national 800 line-based service is that Alzheimer's Association TrialMatch contains a comprehensive, constantly updated database of institutional review board-approved Alzheimer's, mild cognitive impairment and other dementia trials taking place across the U.S. Specialists at the Alzheimer's Association's national Helpline – available 24-hours a day – assist in the process of matching individuals to clinical trials for which they are eligible based on study inclusion/exclusion criteria, diagnosis, treatment history and location.

By Association policy, telephone specialists will not recommend any particular clinical trial, but will describe all studies for which the person is eligible. They will answer questions about the trial process and connect individuals with trial sites based on their unique profile. Patients and caregivers will be encouraged to share their trial matches with their healthcare professionals to help decide whether a clinical trial is appropriate.

"We're looking to physicians to play a leadership role in referring their patients to Alzheimer's clinical trials and to Alzheimer's Association TrialMatch," said Marilyn Albert, PhD, Professor of Neurology at Johns Hopkins and Director of their Division of Cognitive Neuroscience. "As healthcare professionals, there is more we can do to help our Alzheimer's patients post-diagnosis by offering access to potential cutting-edge research and treatments being tested."

Alzheimer's Association TrialMatch can be accessed at www.alz.org/trialmatch or by calling toll-free, (800) 272-3900.

The technology and platform for Alzheimer's Association TrialMatch is provided by EmergingMed.

Know the 10 Signs

#10 Changes in Mood and Personality

"My boyfriend would tell me I was forgetting conversations we had. I was forgetting certain things yet retaining others, so he accused me of "remembering only what I wanted to remember." He also told me I wasn't the same person. I wasn't acting like my "old self." I often became irritated and aggravated with many things which was unlike my normal personality.

With the help of Early Diagnosis and Intervention with medication and treatment, I found out I wasn't going crazy. I found medications to slow down the AD process and therapy to help me cope with my disease. I am still an active member of society, do volunteer work, help take care of my mom who, also has Alzheimer's disease, and am still able to take care of myself. I am able to live alone and function pretty well. I have been able to put all my affairs in order so that my daughter won't have to face that when I can no longer make those decisions. I am able to participate in clinical trials of new medications which may be disease modifying.

Early Diagnosis and treatment has helped me and my loved ones make the best of the situation."

-Lisa Carbo

Know the 10 Signs

#5 Trouble with Visual or Spatial Relationships

"I felt my wife was nagging me about my driving; in my view, there was nothing wrong with it. I agreed to a meeting with my doctor to discuss her complaints. He agreed with her; he told me not to drive.

To foil their view and show them how wrong they were, I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably.

After a Neuropsychometric test, I was diagnosed as having Alzheimer’s disease.

The test told them I had substantial visual peripheral perception deficiency. This meant that I would see things but they had no meaning. This explained why I was screwing up driving, why I was falling after tripping over things in plain sight. It explained why I bumped into closed windows and was clumsy as could be.

My tripping and falling shattered a 12- year-old hip replacement that required surgery that had me on my back homebound, unable to walk, for 2 months. The recovery was rough. That was price enough! I am now on my feet ready to live again.

Knowing about the source of my clumsiness has helped me and my family create a safer environment. It has also given me the opportunity to pursue creative, social and fun activities as much as I want, which is very important to me. I just let my wife drive!"

-Mike Donohue

Know the 10 Signs

#3 Difficulty Completing Familiar Tasks

"The first sign for me was forgetting and having trouble at work. I was trusting my brain to be there and denying that something was wrong. The problem with that I was forgetting too many things and I thought it was menopause. I saw my OBGYN and she said that all was well. I then went to my primary care doctor and we did blood tests. Everything came back normal.

As time went on, it was getting worse and my family, friends and co-workers were growing very impatient with me, especially when I missed dinners or events that were planned. Working as a meeting planner was a more specific problem: I was not able to multitask as I had been for years. I could not remember things without writing them down, and then I could not find the paper with the note on them. And that was that...I had Younger-Onset Alzheimer’s Disease...

It was a blow, but I am not the type of person that gives up that easily. Now, I am active in my community, educating others about this disease and getting involved."

-Karen Zimmerman

Know the 10 Signs

#1 Memory Changes that disrupt Daily Life.

"There was one episode with my memory that scared me a great deal. When I was trying to recall something, in my mind, a large black cloud appeared, covered the answer and it was gone.

I was on a bus on my way to visit my daughter when an elderly woman sat next to me. We began to chat as strangers do. During the conversation she asked where my daughter lived. I got out “Allen…” and that black cloud enveloped the rest. And I stammered, "No it's not Allentown, that's in Pennsylvania. It's not Allenberg, I never heard of that. It's Allen something or other." I must have looked as upset as I felt, because she patted my hand and said, "That's all right dear, we all forget things as we get older."

I know now that the black cloud wasn’t just a sign of aging. Once I was diagnosed and starting getting treated for Alzheimer’s, the black cloud disappeared."

-Mimi Steffen

It's All In How You Hold It

Two years ago, I had a conversation with my friend, Jay, that changed my life. Here is some of what we talked about.

I ask him, “What did it feel like to hear those three words---You Have Alzheimer’s?”

“We (he and his wife) never really did have a moment of denial. I’d accepted the Alzheimer’s Disease diagnosis when the doctor put me on Aricept. That was the time of shock and relief. Finally, we have an answer. We never thought of Alzheimer’s, but it was great to know that it’s not something mysterious anymore. It’s just this thing that five million other Americans have.”

When Jay and his wife left his doctor’s office, they went straight to a bookstore to learn more about Alzheimer’s Disease. They bought The Forgetting (Shenk), Alzheimer’s Early Stages (Kuhn), and Alzheimer’s for Dummies. They learned about the symptoms and stages, living with the disease, and planning for the future. He took the medications prescribed by his physician. But something in Jay urged him to learn and do more.

Armed with a diagnosis, they attended a mind-body retreat, where Jay began to discover new parts of himself, unused by Jay the architect, undamaged by Jay the man with Alzheimer’s.

He ate vegan meals rich in anti-oxidants and learned about natural healing. He began exercising.

“Every morning at the retreat, we did exercises focused on strength and balance and getting the lymph system moving. Aerobic exercise is the number one thing you can do for your health, your brain, and the growth of your brain.”

He started reading more, but not about Alzheimer’s Disease. He tells me that I absolutely have to read Eckhart Tolle, Deepak Choprah, Jon Kabat-Zinn, Stephen Levine, Gary Zukav.

“I’ve been spending a lot of time and attention on books about consciousness and healing. This is the real deal about who we really are, the stuff they never taught you in school. I’m taking it all in as fast as I can without getting in a hurry and falling over myself.”

Jay is looking at me now, his eyes alive and bright, his voice louder and sure of itself. He’s excited about all this, and his mood infects me easily. I perk up.

Look at all you’re discovering.

“I’ve taken my life back. I’m happy. I’ve never been happier. I’ve been spending a lot of time on self-awareness, discovery, and actualization through meditation. I never meditated before this disease. I’m starting to get it down. In the last year, I’ve been actively involved in an intensive meditation group that meets weekly, and the miracles that have been happening since I’ve started doing it have been just amazing.”

I’m nothing short of awed by Jay’s transformation. Here’s a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man.

“My main avocation has always been music. I’m in a folk string group, and I’d always played the banjo and guitar. Recently, my friends in the group encouraged me to try mandolin, so for a few years now I’m becoming a serious mandolin player.”

Wow, that’s impressive. You realize that you have a disease that makes it difficult to learn new tasks.

“Yes, but that’s exactly what you need to do! It’s like doing my Sudoko every morning. Learning a new song, a new skill, challenging the grey matter and forging new pathways. And music also gives me a connection to the people I play with. My wife and I have been in a community chorus for years. It’s a great outlet for self-expression and creativity..”

Jay, what you’re doing is incredible. You know, most people can’t imagine you. When most people think of Alzheimer’s, they see end stage. They skip immediately from diagnosis to deathbed.

“For the first time in my life, I’ve got nothing to lose. It’s liberating. It’s real clear to me. Our priority is living the good years we have left. We know the shape of the end of this thing, but we still have a lot of living to do. Right after diagnosis, I began attending a guitar/mandolin camp, including a couples weekend with my wife, and I’ve already signed us up for next year’s mandolin camp and couples’ weekend. And I bought a new car, even though I may not be able to drive much longer.

I’ve come to see the importance acceptance and accommodation—accepting the diagnosis and all its implications, and learning to adjust and accommodate to the limitations it imposes—and then refocusing and reprioritizing my life to my newly rediscovered core values. Anyone can discover their own. Mine are family, creativity, life-long learning, service to community.”

A man with a video camera is hovering a few feet away. I look down at my watch. My time with Jay is about up. He has an interview with some folks from HBO next. I wish I we had more time together. I’m learning, inspired. I like him. He knows who he is and what he’s about. It’s magnetic. I want to be in the presence of his peace and excitement for life. I don’t know many people in this world who have what Jay has found with Alzheimer’s.

“A brilliant young professor left me, over 50 years ago, with 'it’s all in how you hold it.' For me, after all of this, it all boils down to living my life like there’s no tomorrow, while conducting myself and treating my body-mind-spirit in such as way as to maximize the number of tomorrows that I’ll have available.”

Lisa Genova, Ph.D., author of Still Alice, www.StillAlice.com

Urgent Alert from the Alzheimer's Association CEO

It is possible that there has never been a moment in America with so much potential to either advance or diminish Alzheimer's research and care. Our nation faces unprecedented times and, with that, comes an unprecedented opportunity to seize this moment and insist our leaders make a greater investment in finding ways to effectively treat, cure, and prevent Alzheimer's disease.

There are an estimated 5 million people who already have Alzheimer's. As many as ten million people care for them. The disease has risen to the 6th leading cause of death in the U.S. Millions more will experience the devastating effects if we don't stop Alzheimer's now. Components of the stimulus package and health care reform could benefit them.

From March 23-25, the Alzheimer's Association will take its fight to Capitol Hill for its annual Public Policy Forum.

It is critical to our mission, to the people we serve, and to society at large to make this Public Policy Forum louder than ever. We need advocates from every state and from every congressional district. We need people with the disease, their caregivers, health care professionals, business leaders, and scientists to raise their voices and educate our policy makers so they know that an investment in Alzheimer's is an investment in the economic health of the nation and the personal health of millions.

The volunteers and staff of the Alzheimer’s Association are working hard to make as much noise as possible about key Alzheimer's issues and to make it as easy as possible for people to attend the Forum. Early-bird discounts and group discounts are available.

Please seize this moment and take an extra step this year by attending the Alzheimer's Association Public Policy Forum in Washington, DC, March 23 - 25. Our elected leaders need to hear your voice.

Never before has so much been at stake nor has time to help families and advance science been more precious. We need to demonstrate both in numbers and in facts why Alzheimer's matters. I look forward to seeing you, and all the others you'll recruit, in Washington.


Harry Johns
President and CEO
Alzheimer's Association

Please contact the Alzheimer's Association at info@alz.org

Alzheimer's jumps to 6th Leading Cause of Death

CONTACT: Toni Williams, 202-638-8666, toni.williams@alz.org

ALZHEIMER’S DISEASE SUPERSEDES DIABETES
AS SIXTH LEADING CAUSE OF DEATH IN THE UNITED STATES

CHICAGO, June 12, 2008 -- Alzheimer’s disease is now the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention (CDC) National Center for Health Statistics. The CDC estimates that 72,914 Americans died of Alzheimer’s disease in 2006. With an unprecedented historic population shift of 78 million aging baby boomers in the country and this disease poised to strike 10 million boomers - it is clear this escalating epidemic must be addressed now.

Today, as many as 5.2 million Americans are living with Alzheimer’s disease. The Alzheimer’s Association’s 2008 Alzheimer’s Disease Facts and Figures report revealed one out of eight baby boomers will develop this disease that currently has no effective disease-modifying treatments to halt or delay its progression. Experts predict by 2010, there will be almost a half million new cases of Alzheimer’s disease each year; and by 2050, there will be almost a million new cases each year.

“The CDC’s announcement that Alzheimer’s disease jumped from the seventh to the sixth leading cause of death should serve as a wake-up call to the nation,” said William Thies, PhD, vice president of Medical and Scientific Relations at the Alzheimer’s Association. “The fact that there are no effective treatments for Alzheimer’s has allowed the disease to pass diabetes. It is vitally important that we increase Alzheimer’s research funding to slow or stop the progression of this devastating disease.”

Researchers are closing the gap in developing accurate ways to diagnose and treat Alzheimer’s. Although there are several promising drugs currently in Phase III clinical trials, insufficient research funds are committed to research focused on Alzheimer’s disease treatment and prevention. This situation is further compounded by the fact that for the past five years the NIH budget has been essentially flat. The personal and economic impact of Alzheimer’s is so large that no one entity can solve the problem alone. It will require all levels of government and the private sector working together to diminish the human and economic cost. It must begin with accelerating research.

The CDC also reported that while deaths from Alzheimer’s disease were on the rise, other chronic conditions were on the decline. Between 2005 and 2006, the largest decline in age-adjusted death rates occurred for influenza/pneumonia (12.8 percent), and also included chronic lower respiratory diseases (6.5 percent), stroke (6.4 percent), heart disease (5.5 percent) diabetes (5.3 percent), hypertension (5 percent), chronic liver disease (3.3 percent) and cancer (1.6 percent).

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.

Talking with Jenny

I can’t really talk about Jenny without including Don. Don is Jenny’s husband. And more than anyone else I’ve met with Alzheimer’s, they are in this experience together.

I meet up with Jenny and Don at a café. Around lunchtime, it’s crowded and noisy with customers. We decide we need to find a quieter and less distracting place to sit and talk. Jenny is thirsty, so Don leaves us to buy a bottled water for her before we go. He has just finished telling me that Jenny fell outside on the pavement.

Are you cut?

“What do you mean?”

Are you bleeding anywhere?

“Why?”

You just fell?

I’m unsure that I want to pursue this line of questioning. I don’t want to shine a spotlight on her Alzheimer’s like this. I don’t want to make her uncomfortable.

“I did? Is that what he said?”

Yes.

“Oh, then I must’ve. I’m fine.”

She smiles and puts me at ease. So much about Jenny strikes me as vibrant and playful and young in spirit. She’s wearing a hot pink shirt and crocs. Her gray hair is pulled back tight into a high ponytail. Even her name, Jenny, and not Jenn or Jennifer, is fun.

Don returns with her water, and we head off and find a quiet spot.

Tell me about a typical day for you.

“I always go out. I walk a whole lot. We live near water, so I love walking down by the…the….the…”

“Lake Michigan,” says Don.

“Lake Michigan, yes. I love walking. I always have.”

Do you walk alone?

“Oh, yes.”

Where do you live?

“Up at the top…it looks right down to the water. It’s wonderful. It’s a lovely view. I walk there and almost anywhere. I walk up to…within…ahh, it’s so clear to me.”

“The Art Institute,” says Don.

“Yes, the Art Institute. The Cultural Center. You know, it’s very nice.”

Jenny’s anomia is quite severe and interferes with almost every answer she gives.

“I go to concerts at the Cultural Center. No set schedule. I can’t do as much as I used to do. But I always want to walk forward. I get angry at people who don’t want to let me do things or insist that I do or don’t, whether it’s silly or important. I don’t like those rules. On the other side of it…I…it’s doing what I really love to do…is spend time down close to the water.”

I wonder if her experience of this symptom is frustrating or embarrassing. It doesn’t seem to bother her. She appears to be genuinely enjoying our conversation.

What is it like having Alzheimer’s?

“I don’t think about it. I think I know all I want to know about Alzheimer’s. I do most things now that I did before. I definitely got annoyed when I found out I had it. But I thought it was me. It was a relief to know it was something other than me causing the problem.”

“Jenny was diagnosed April 1, 2002. Some joke! Her major symptom was agitation. As soon as she was diagnosed, the agitation stopped,” said Don.

Tell me about what you like to do at home.

“I look at some of the old bits of…I’ve been putting things away for years and years and years and years.”

“Letters to your mother. What she’s been putting away. She’s been going through letters she wrote to her mother,” explains Don.

“They’re steamy!” Jenny laughs.

She doesn’t remember her own letters to her mother when she reads them, but she enjoys them, often laughing out loud as she reads. She doesn’t mind that she doesn’t remember writing them or the stories as belonging to her own history. This feels normal to her. The stories in those letters happened so long ago, she feels that anyone could forget them. She’s not disturbed at all. She enjoys the letters for the content that’s there and doesn’t see them as evidence of a woman she once was who she can no longer remember.

“I sometimes look at some of the old stuff. I was an only child.”

“For a while you were. You have a sibling. There are two of you,” says Don.

“Oh, yes, that’s right. Anyway…”

Jenny and Don have many of these exchanges. Jenny can’t find a word, and Don fills in the blank. Jenny says something inaccurate, and Don corrects her. And she then agrees or disagrees or chooses to ignore him and continues on in stride, unruffled. Don is never patronizing. He’s not correcting an Alzheimer’s victim. The respect he has for his wife is obvious and enormous, and I can’t imagine it has been diminished at all by this disease. These little sidebars feel like the ordinary exchanges between a husband and wife who’ve been married for a long time. Of course, what Jenny can’t remember isn’t ordinary. But they both treat it that way. And it moves the conversation along. No one is embarrassed or upset or apologizing.

“I’m English to begin with. I came here in…”

She looks to Don.

“’64.”

“Yes, ‘64, and I actually didn’t like it very much. It seemed a stuffy place!”

She laughs.

“Well, she’d been in Africa for five years.”

“I was in Nigeria for four years, so I’d already done all that.”

What were you doing in Nigeria?

For the rest of my conversation with Jenny, we don’t talk about Alzheimer’s. She tells me about Nigeria, about college at Oxford, about her former job in health advocacy, about her travels and friends. At one point, I realize that we don’t have much time left together, and I’m tempted to ask her to get back to talking about Alzheimer’s. But thankfully, I don’t. Jenny isn’t about Alzheimer’s. Don isn’t about Alzheimer’s either. I remember what she’d said earlier:

“I don’t think about it.”

Her Alzheimer’s is like a naughty toddler throwing a tantrum in the middle of the room. If they were to try to tame it, bargain with it, or beg it to stop, if they became embarrassed or enraged by it, they’d only be feeding energy into it, making it bigger. It would take over and define their experience. Instead they ignore it and carry on. It’s there, but they don’t focus on it.

When I think back on my conversation with Jenny, I picture sunny walks along Lake Michigan, concerts at the Cultural Center, and Africa. I remember her pink shirt, her ponytail, and her laugh. And I remember the big hug she gave me when we were done.

Lisa Genova, Ph.D. author of STILL ALICE, excerpted from LIVING ALZHEIMER'S

Changing the Wind

Below is the speech given by James Smith at the 2008 Alzheimer's Public Policy Forum Candlelight Vigil earlier this week. His words--moving, clear, and true--blew me away. Like a powerful wind. Changing.

2008 Alzheimer's Public Policy Forum - Candlelight Vigil
Washington, D.C.
Remarks by James W Smith

"Thank you.

It is an incredible honor to be asked to speak to you tonight. And it is especially fitting that we are here at the Capitol reflecting pool, at a time when reflecting inside ourselves - as individuals, as a nation, and as a society - has never been more important.

People have said that in Washington, DC it is easy to tell who our elected officials are. They are the ones standing on the street corner with their moistened fingers held in the air - testing to see which way the wind is blowing. And in order to drive real change here - it does no good to simply replace them with others who will do the same. The way to get real, meaningful change is to change the wind. I want to talk to you tonight about what brings me here - and what brings us
together.

And I am here to ask for your help in changing the wind.

We must help those here in Washington, and those representing us at home feel the power of the changing wind, in order to save our nation and our society from the storm that is already bearing down upon is. It is a storm that will tear us apart as a people and a nation if we do not turn to face it, change our priorities and get in front of it now.

That storm is Alzheimer's Disease.

And so, why am I here tonight? For several reasons. I am here because a little over two years ago I sat frozen in a chair across
from my neurologist at the Mayo Clinic as he said to me, "You have probable Alzheimer's Disease." Five words that changed my life, and the lives of those I love and care for forever.

Up until that day, Alzheimer's was not even on my radar screen. I was a busy IT Director for American Express, with twin daughters just entering college. My wife Juanita and I were entering the second half of what we liked to call "our charmed little life". We were looking forward to so many things as a couple, as a family - and it all shattered in an instant with just five little words - "You have probable Alzheimer's Disease."

And here's the deal. That moment is repeated every 71 seconds in America today. Once every 71 seconds, another person develops Alzheimer's Disease. And that person, and their family must walk out of the Dr.'s office with shattered hearts and lives and dreams and struggle to deal with those five little words and all that they imply. And the pace is accelerating. It is a tragedy in the making. Today there are over 5.2 million people in America diagnosed with Alzheimer's Disease. And by 2050, that number will explode to over 16 million in America, and over 100 million worldwide.

Think about that for a moment...

Sixteen million. Look around you right now. There are less than a thousand people here tonight. If you took those 16 million people - each of whom have been diagnosed with this devastating, incurable, degenerative brain disease - and lined them up
- shoulder to shoulder along the highway - that line would stretch from New York City to Los Angeles, and then turn up the coast for over another 1000 miles.

And if you drove along that highway lined with Alzheimer's patients - you would pass over 3,000 in the first mile. And - standing behind each of those patients - would be 32 million caregivers, and their families, and communities.

And that scenario is EXACTLY what we face if we do not refocus our national priorities and get in front of Alzheimer's now.

I am here tonight because I cannot let that happen. WE can't let that happen. WE cannot let our elected officials stand by and do nothing and allow Alzheimer's Disease to overwhelm us. The next time you are in front of your congressman or senator, ask them this question: "If you knew - without a shadow of a doubt -that someone was bringing to our shores a biological weapon of mass destruction SO POWERFUL that it would kill 16 million American citizens in a crippling, relentless and ruthlessly cruel manner - what would you be willing to do to stop that from happening?"

Not just as an elected leader - but as a human being? Because that biological weapon of mass destruction is already here. That
biological weapon of mass destruction is Alzheimer's. It has already infected over 5 million American citizens - and is attacking a new person every 71 seconds.

Ask your leaders: "What ARE you willing to do to stop this NOW - before it explodes into a tsunami?" Ask yourselves - what am I willing to do?

The sad truth is that if Alzheimer's was smallpox, we would have emergency measures, quarantines, and troops in the streets. Our elected officials would be all over themselves making speeches and passing the necessary emergency directives, and policies and laws and providing whatever funding was necessary to quell the outbreak. We would mount a full-court press as a
nation and WE. WOULD. STOP IT. Where are our leaders tonight? Where is the outcry? Where are the troops? Where are the emergency measures? And most importantly - where is the funding?

We know how to stop Alzheimer's - all we need is the will and the focus and the funding. We are SO CLOSE. If we as a nation had dedicated 1/10th - one 100th of the amount we have spent on the war in Iraq towards Alzheimer's research - Alzheimer's would be CURED. And we would have saved over 10 million lives and trillions of dollars. There is still time. But not much. Nobody else will make this go away for us. We are all - every one of us -responsible for stopping Alzheimer's. It is up to us. If not us, then who -our children?

And if we do nothing - if we simply stand by and watch and let this tragedy play out - we are sentencing 16 million Americans to an early, tragic and unnecessary fate. Make no mistake - if we don't stop it Alzheimer's Disease will impact every
single person in America in one way or another.

That doesn't have to happen. And I committed to helping make sure it doesn't.

And finally, this brings me to the most important reason I am here tonight. And I suspect it is the same reason many of you are here as well. It is the simplest thing in the world - and yet the most powerful. As I mentioned in the beginning, I have two daughters. They are amazing, bright and beautiful girls entering their senior year at Northwestern University this year. They are the light of my life - and I am more proud of them than any words can ever express. Although I understand that the reality is that I may not be alive or aware enough to benefit from the cure that I know in my heart is coming - it will come. It simply has to. The price of failure is too high.

And when it does - when that day comes that we no longer have to fear the terrible scourge of Alzheimer's - I want my daughters to know that I what I did here tonight - and what I did here this week - I did for them.

Thank you."

Mother's Day Tribute

Mother’s Day is just around the corner…

If you’re looking for a special way to honor someone you love who’s been affected by Alzheimer’s, make a tribute donation to the Alzheimer's Association and write them a note on our Mother’s Day Tribute Wall.

Messages will be displayed throughout the month of May.
Make a tribute donation now!

Thanks for your support of the Alzheimer's Association!

Flowers for Mother's Day!

Use coupon code ALZ4 at 1-800 Flowers; you'll get a 10% discount off your purchase and 10% of the net proceeds will be donated to the Alzheimer's Association!

California Asks The Question

Busting The Myth of Alzheimer's

Peter Whitehouse and Daniel George wrote a book called The Myth of Alzheimer's.  In it, they claim that "there is no such thing as Alzheimer's Disease."  "Alzheimer's Disease represents our culture's attempt to make sense of the natural process of brain aging that we cannot fully control."  So, in an attempt to control it, "we've created an antagonist" and named it Alzheimer's Disease.

They claim that because we don't know the "singular cause" of Alzheimer's, because we can't cure it, and because we can't differentiate Alzheimer's from normal brain aging, we should stop diagnosing people with this "label."  Labeling someone with Alzheimer's only causes them harm from the stigma attached to it.  We should stop treating people with Alzheimer's medications, and we should certainly stop looking for a cure.  Dementia is just normal aging, and you can't cure aging.

Wow.  Where do I begin?

Let's start with cancer.  We don't know yet what causes cancer or how to cure it.  We treat it with crude, non-specific poisons that risk the very life of the person who takes them.  There used to be a HUGE stigma attached to having cancer.  Remember when everyone called it "the big C?"  Cancer is not caused by one singular process.  It is caused by a complex interaction between genetic and environmental influences.  Should we not call cancer a disease?  Of course not.  Do we not tell someone they have cancer because of the stigma that might be placed on them?  Of course not.  Do my chances of developing cancer increase as I age?  Yes, they do.  Is cancer a normal part of normal aging?  No, it is not.

Likewise, we can think about heart disease.  Do most people develop accumulations of plaque in their arteries as they get older?  Yes, they do.  If untreated, will most people develop cardiovascular disease if they live long enough?  Yes, they will.  So is having cardiovascular disease a normal part of normal aging?  No.  Over the course of 50-100 years, we, as human beings who eat fatty foods and don't exercise enough, develop plaques that clog our blood vessels.  This leads to decreased blood flow to the heart which leads to oxygen deprivation of the heart muscle which causes a heart attack.  Do we just accept this as normal aging and do nothing about it?  No, we do not.  We diet and exercise.  We go to the doctor and get tested to see how much plaque we might have blocking our arteries.  And we take medications, like statins, to decrease the buildup of these plaques, decreasing our chances of getting a heart attack.

Proclaiming that Alzheimer's is not a disease and that dementia is due to normal aging is simply wrong and irresponsible.

Genetic mutations in the genes for presenilin-1, presenilin-2, and amyloid precursor protein CAUSE Alzheimer's Disease 100% of the time. Malfunctions caused by mutations in these proteins result in a buildup of amyloid beta 42, causing clogs in neural synapses, causing dementia.  This process causes disease.  A malfunctioning presenilin-1, presenilin-2, or amyloid precursor protein is not a normal part of normal aging.

Normal aging is forgetting someone's name.  Alzheimer's is forgetting your spouse's name.

Yes, diagnosis is tricky today.  We are still developing the tools sensitive enough to measure what needs to be measured to detect Alzheimer's Disease.  An MRI is not sensitive enough.  A blood test won't reveal it.  Plaques (are you looking at diffuse or neuritic?) and tangles are not accurate correlates.  Pencil and paper tests are only so telling.  Again, think about cancer. Diagnosing cancer can include tests and scans that have false positives and false negatives.  It can involve invasive surgeries to rule it in or out, to determine if the mass is benign or malignant.  The diagnostic process may be imperfect, but we use every piece of information we have available today.  Just because diagnosing Alzheimer's today is difficult, it doesn't mean that there isn't a disease there to diagnose!

And we should diagnose Alzheimer's if it's there.  Why?  Because we can treat it with Aricept and Namenda.  Because we can exercise, eat a Mediterranean diet, meditate, and stay mentally active.  Convincing people that Alzheimer's is not a disease and should not be diagnosed will needlessly keep people who are suffering with dementia away from doctors, away from Aricept and Namenda, away from planning responsibly for their future. In denial. Not to mention frustrated and scared.

Maybe, in the future, we will be able to treat this disease without saying the words "You have Alzheimer's Disease."  My grandfather died in 1978 of heart failure at the age of 69.  My father had high cholesterol in his fifties and went on a statin. He walks several miles a day. He is now 67, and his cholesterol levels are low. He has never had a chest pain. He was never told that he had heart disease. He was at risk. I hope he outlives my grandfather by a couple of decades.

Maybe, in the future, the treatment of Alzheimer's will look more like this, more preventative. Family history, an amyloid-specific scan, and some neuropsychological testing show you're at risk for developing Alzheimer's, so you go on medication and stave off symptoms to maintain quality of life for as long as possible.

Growing old without Alzheimer's.

But we have to bust Whitehouse and George's myth and acknowledge first that Alzheimer's is a disease.

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Senators Clinton, McCain and Obama:

Full page ad as run in the New York Times, Wall Street Journal, Washington Post, and Politico on March 18.

Alzheimer’s Association releases new Facts & Figures report

Alzheimer’s Association releases new Facts & Figures report to the nation, calls on candidates for plans to address the growing burden of Alzheimer’s. View the report: http://www.alz.org/alzheimers_disease_facts_figures.asp

CONTACT:

Media line: 312.335.4078

Toni Williams: 202.638.8666

toni.williams@alz.org

Alzheimer's: A New Earth

A lot of people I know are reading A New Earth by Eckhart Tolle and discovering a new consciousness. Oddly enough, a number of people I know with Alzheimer’s have already discovered this new consciousness but not through A New Earth. They discovered it through Alzheimer’s.

Huh?

Let me try to explain.

Following a diagnosis of Alzheimer’s, you are no longer an engineer, a teacher, an accountant. You are no longer a tennis player, a chess player, a piano player. You are no longer good at math. You are no longer good in the kitchen.

You ask yourself, “Who am I now?”
You ask yourself, “Has my real self died?”

You are no longer the YOU you used to be. You are having trouble even remembering the YOU you used to be. Your FORMER Self is gone. Alzheimer’s has greedily taken hold of your former Self, is clenching it with both hands, and won’t give it back. The loss of this former Self is experienced like a death. You grieve the death of your former Self.

But once the grief has passed, you may be able to see what is left, no longer obscured by the former Self. What remains is the REAL self.

Huh?

Here’s an excerpt from my next book, LIVING ALZHEIMER’S which speaks to this discovery and includes a quote from Eckhart Tolle’s A New Earth:

I'm nothing short of awed by Jay's transformation. Here's a man who has been diagnosed with a disease synonymous with death, but the man before me, in this present moment, is not a dying man. He is not angry, depressed, resentful, blaming, jealous, fearful, or in denial. How is this possible? How can he not be angry about the loss of his successful career, his identity, as an architect? How can he not be resentful about the fatigue and the loss of cognitive capabilities that interfere with his days? How can he not be consumed with fear about his future? Why doesn't he feel lost?

Some time after our conversation, I read every one of the books Jay recommended. I will forever be grateful to him for introducing me to this knowledge that has changed the way I look at the world and inhabit my own life. Thinking of Jay's transformation, I'm struck still while reading Eckhart Tolle's A New Earth. And I get it.

"Whatever they had identified with, whatever gave them their sense of self, is taken away. Then suddenly and inexplicably, the anguish or intense fear initially felt gave way to a sacred sense of Presence, a deep peace, serenity, and complete freedom from fear....When forms that you had identified with, that gave you your sense of self, collapse or are taken away, it can lead to a collapse of the ego, since ego is identification with form. When there is nothing to identify with anymore, who are you? When forms around you die or death approaches, your sense of Beingness, of I Am, is freed from its entanglement with form: Spirit is released from its imprisonment in matter...You realize your true identity as consciousness itself, rather than what consciousness had identified with. That's the peace of God. The ultimate truth of who you are is not I am this or I am that, but I Am."

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Happy Valentine's

John and Mary have been married for fifty-three years. Mary has Alzheimer’s Disease and lives in an Alzheimer’s Care Facility. John visits her every day. Every day, Mary does not know who he is.

Today is Valentine’s Day. He thinks about how much he loves his wife, about all she has meant to him, about all they’ve shared together over fifty-three years. When he visits her today, he brings her a rose and a box of her favorite chocolates.

As he offers his gifts to her, he says, “Happy Valentine’s Day, sweetie.”

She accepts the lovely rose and her favorite chocolates with polite pleasure.

He then says, “I love you, Mary.” And he tries to give her the gentlest kiss.

She swats at him and screams.

“Mary, I’m your husband. I’m John, your husband.”

Mary looks repulsed and scared and would get up out of her chair and run out of the room if she could.

“Get out!” she yells and covers her face with her hands.

“I love you, Mary. I’m your husband, John. Look at me, I love you.”

He tries to take one of her hands away from her face and hold it in his. She used to love holding his hand.

Mary squeezes her eyes shut and screams, “Help me! Somebody help me!”

After an aide comes in and settles Mary down, John leaves, heartbroken that he can’t spend meaningful time with his beloved wife on Valentine’s Day.

John can still have meaningful time with Mary. But he has to give up his old relationship with her in order to have a new one. The parts of Mary’s brain where John lived, the parts that housed Mary’s memories of the last fifty-three years, are either not working or are missing. Think about that. She has no memory of being diagnosed with Alzheimer’s, no memory of John, of being his wife, of being sixty, fifty, forty, or thirty years old. This information simply does not exist in her brain. Like it is for all of us, her truth, her reality, is based on the information she does have in her brain.

To Mary, she is only twenty-five years old. She knows no information beyond that. That is her truth. Imagine being twenty-five years old, and an eighty-year-old man you don’t recognize insists that he’s your husband, that he loves you and wants to kiss you. You’d fight him off, too!

John has to give up on being right and the truth according to his bigger brain and work with the truth as Mary lives it. He should not insist that he is her husband. To her, he is an old man, someone’s grandfather, and she is a young woman. He has to find a new relationship---

She has a beautiful smile. It reminds him of his granddaughter’s who lives far away. Would she mind if he visits with her for a while?

Where is she from? Well how about that! They’re from the same home town and can spend time reminiscing about life there.

He has a box of chocolates. Her favorite. Would she like one?

And go from there.

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

The Beginning

I've started writing my next book, a nonfiction collection of conversations with people in the early stages of Alzheimer's Disease. Here's an excerpt from the Introduction--- Please feel free to comment. I'd love to hear what you think!

Alzheimer’s disease.

Now close your eyes. What do you think of? Who do you see? I see an eighty-five-year old woman with short, white hair, wrinkled skin, and polyester pants. I see her forgetting when she ate breakfast and when she was born. Forgetting where the bathroom is and where she lives. Forgetting the name of the United States President and the names of her children. I see her forgetting her own name. Forgetting me. I see my grandmother.

You might have imagined your own grandmother. Or your elderly parent. Maybe you don’t know anyone with Alzheimer’s. Maybe you imagined Gena Rowlands in The Notebook or Julie Christie in Away From Her.

Most of us know what Alzheimer’s disease looks like. Or do we?

Like most people who come to know Alzheimer’s in a loved one, I’ve read and learned a lot about this disease, from the molecular and clinical to the self-help and how-to-care-for. But for the most part, what we know about Alzheimer’s is gleaned from experience with elderly people diagnosed well into the progression of this disease. Because we as a culture expect eighty-year-olds to be normally forgetful, because retired grandparents are no longer accountable to corporate bosses, because they don’t have to produce a certain number and quality of widgets each day, because they might be widowed and living alone with no one to regularly witness the full extent of what is happening, because it is far easier to deny what is happening well after we suspect it or even trip over it, we don’t usually see Alzheimer’s in its beginning.

And unfortunately, once this disease marches past the beginning, we can no longer really know what that beginning was like. Beyond the beginning, clogged synapses, faulty neurotransmission, inflammation, and cell death take the upper hand. Beyond the beginning, those parts of the brain that mediate memory and language and that inform awareness and identity become increasingly inaccessible. People with Alzheimer’s who’ve deteriorated past the beginning stages can no longer remember the recent time period of their personal history that was ‘the beginning’. They can’t describe what it feels like to have Alzheimer’s Disease because those communications skills aren’t working. And more confounding, they may no longer be capable of understanding that they even have Alzheimer’s disease.

We know what Alzheimer’s disease is like from the point of view of the tireless, loving caregiver. We know what it is like from the point of view of the Hollywood director. But, what is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? What does the face and voice of early-onset Alzheimer’s look and sound like?

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Finding Your Kaleidoscopes

You’re at a party in the middle of telling a story about your favorite childhood toy, but you can’t for the life of you come up with its name.

“Oh, what’s it called?” you ask yourself as you rummage around in your brain.

This classic tip-of-the-tongue phenomenon is something most people experience occasionally. For some usually frustrating period of time, a word that is stored in long-term memory refuses to be grabbed and recalled. Most people know they know it and have access to some aspect of the target word while in this state, like its meaning, the first letter, or the number of syllables.

“I know it begins with the letter K.”

Eventually, either through concentrated effort, bumping into the right associations, or when no longer consciously focusing on hunting it down, the word magically surfaces.

“Kaleidoscope!”

The average twenty-five-year-old experiences one to two tip-of-the-tongues a week. And the frequency of this normal phenomenon does increase with age. But for someone with Alzheimer’s, missing words interfere far more often and typically don’t offer helpful clues. These missing words aren’t so much on the tip of the tongue, ready to spit themselves out. They’re hiding somewhere deep in the brain. For someone with Alzheimer’s, this difficulty with recalling the names of everyday names and objects is called “anomia.”

Here’s where the concept of ‘exercising your brain’ or cognitive retraining can be extremely helpful. If you’re experiencing anomia and having trouble getting to the word KALEIDOSCOPE because amyloid beta goo is blocking the main roads to it, then having other, goo-free roads that lead to KALEIDOSCOPE can help you.

If you only have two neurons that have learned to connect to the word KALEIDOSCOPE and those two connections become jammed, then the word is inaccessible. Forgotten. But if you have ten neurons that have made connections to the word KALEIDOSCOPE, then those two gooey pathways can be detoured. The main roads that had always been the quickest routes are blocked, so it may take a longer time to retrieve the word, but you can still get there.

So the more connective neural roads you build to a piece of information, the more likely it is that you’ll still be able to get to that piece of information as some of your roads become impassable.

“Childhood toy” is blocked.
“Tube containing mirrors and pieces of colored glass or paper” is blocked.
Beatles song, Lucy in the Sky with Diamonds, Girl with the eyes:

“Kaleidoscope!”

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com