Her book, slow dancing with a stranger. Before i start my full introduction, meryl comer has asked me to play a short video and im going to turn that on just as an introduction to the talk. Before i do that, if you dont mind turning off your cell phones, that will just help us stay focused on the topic at hand with less disruption during the talk. [inaudible conversations] [inaudible] [inaudible conversations] [inaudible] [inaudible] [inaudible] it is time for a generation to say unacceptable. This is not the way for us to analyze okay. As i said, i am in german i am one of the managers here at politics and prose and i welcome all of you today. As you know, we have many events youre at the store and then we had things going on nearly everyday, sometimes multiple times a day. If you are not all connected through our email list or checking our calendar online, or if you would like to be in our emails, is stay involved and we consider ourselves much more than just a bookstore. We are a Community Space that welcomes conversation and we have classes and both groups and author talks such as this one. So welcome and thank you for coming. [applause] meryl comer is an Emmy Awardwinning veteran reporter and talk show host and she was among the first tv news women in the 1980s to specialize in Business News as it relates to Public Policy with a nationally syndicated debate show, it is your business. She also coanchored nations as this today on espn. She is now the ceo of the Geoffrey Beene foundation alzheimers initiative, which is prominently providing 100 of the net profit of the Geoffrey Beene income dedicated to the foundation along with work of cancer and Wounded Warriors and protection of women and children. She has provided testimony and served two times on the alzheimers board of association or she is a Founding Member of u. S. Against alzheimers and a cofounder of the women against alzheimers network. Alzheimers disease affects 36 Million People worldwide and her husband was the chief of hematology and oncology at the National Institute of health when he was diagnosed with early onset alzheimers at age 58. She decided to leave her television her to become a caregiver both for her husband and for her mother who had alzheimers in home hospice. Since the 1996 diagnosis, she has become an outspoken advocate on this illness and for the rights that caregivers and patients alike should have. In her book, slow dancing with a stranger, lost in the age of alzheimers, she dedicates her struggle and as a caregiver and dealing with longterm care facilities. And so to enhance the public conversation, she has come to share her book with us today and we thank you very much and we welcome meryl comer. [applause] my thanks to you all coming out on this glorious day, this last day of summer. I am so touched. This issue is so important, i think, to all of us. I would like to do a survey because i am much more interested in the audience than might help. So i would like to ask you how many have a Family Member or relative with this disease in the audience . And how many have a friend or colleague whose loved one has been affected . A Family Member or friend in a caregiver role. Are you concerned about a loved one or yourself . Raise your hand. And are there any doctors or lawyers or psychiatrist and politicians in the audience . Oh, good. We have a good conversation. This is a very special audience to me. Because you are engaged around the body of politics in this town and with the cspan audience. To me, this is one of the most important stops that i will ever make on this book to her. This morning i googled to see how many books have been written on alzheimers. There are over 11,000 books, which prompted me to think, do we really need another book on alzheimers and i thought id better tell you what this book is and what it is and and first of all, i applaud those familieo speak how they have learned to live within the disease and if you will recall, this disease has been around for a very long time and many of the nonprofits that grew up in that state had to help people live in the moment and when there is a disease with no cure, you have to be able to live in that space with a loved one and it stretches out over the years. The span of a disease like this can last from three to 20 years. And i am right on the tip of 20 years. Told that my husband would not last long because he was an early onset victim and we can get into that issue later. But most of the book that i have read cannot keep up with the idiosyncratic twists in terms of how each of us is. We are different personalities and it is very hard to write the book that will tell you how to manage a loved one through this process. But i couldnt write a book that accepts the accept the status quo and i have great admiration for those who help others live in this. Because this is a disease that will ravish our generation as baby boomers and create an untenable border and on our children and i find that unacceptable. When you put yourself out there as an author, you really put yourself out there as an author. I also believe, and the reason i was willing to write it, it is a shout out to all caregivers because caregivers are the keeper of the secrets and we know the details. But most people dont want our details. So we are very quiet and we believe that it is our responsibility to protect loved ones dignity. And we do that very well. We do that by hiding loved ones away so you never see what the disease really looks like. It is very painful to see a smart individual producer and totally dependent upon you were someone who cant remember who you are and i think that that is one of the most dramatic things that happen. And because this is such an important audience, i thought that i would like to share with you some of the latest statistics. You and everyone you know will eventually be touched by this disease but living with it doesnt need to be so cruel. 50 of people will develop some form of dementia by the time they are 85 years of age and remember that 85 years old is the fastest demographic growing in the country and also, by the way, predominantly women. So this is a huge issue. And i will not go beyond 20 or 30 because politicians cant get beyond one year. We will have 76 Million People suffering from this disease. And the impact is growing. 44 million victims worldwide, 10 million baby boomers and 1 trillion in annual costs to care for loved ones with this disease. And this is what we view as the crisis of our generation of children. We spend a great deal of money annually on this disease and if you look at the bottom, the little red line, less than 1 on research. So we spent about 9 billion on hiv and aids, cancer is around 5 billion a year and less than 1 when we had 76 million baby boomers turning 65 at the rate of 10,000 per day, 4000 4 million a year for the next 20 years. The youngest baby boomers turn 50. Is anyone here younger than 50 . Because i would like to talk your generation as well. And this just came out from a Merrill Lynch study done in conjunction with age. More people now cited as a Serious Health condition of later life than cancer, stroke, heart disease, diabetes, and arthritis combined. And the most worrisome disease, if you are 55 or over, it is definitely alzheimers. Fortyfive to 64, 18 to 44 is cancer as well. This is the most worrisome disease later in life. But what is most striking is that its not just baby boomers that are worried. It is our children. And our children are watching us take care of our parents, looking at the wear and tear and what it is causing with their dreams and dreams that might be put on hold and saying, is that our future . This is one of the first times that we are beginning to understand how infectious, although this is not a disease, how infectious it is to the family. For those of us that have spent a lot of time in this town, if you go back 20 years, the debate with Social Security was going to create the intergenerational rivalry and this time it is going to be alzheimers. And this tells you how it affects the brain. Im sorry . Okay. Its too good not to do. Okay, we just lost the video here. Sorry about that. Here it goes. And we are looking for sound. It comes on gradually as to abnormal protein kill brain cells. And they start here in the hippocampus, a part of the brain where memories are first formed. And over many years time, the plaques and tangles slowly destroy the hippocampus and it becomes harder and harder to warm new memories. Recollections from a few hours or days ago that the rest of us might take for granted are just not there. After that, more plaques and tangles spread into different regions of the brain, killing cells and compromising functions wherever they go. This spreading around is what causes the different stages of alzheimers. From the hippocampus, the disease spreads here to the region of the brain brain where language is processed. When that happens, it gets tougher to find the right words. Then the disease creeps towards the front of the brain where logical thought takes place and very gradually a person begins to lose the ability to solve problems and grasp concepts and make plans. Next, the plaques and tangles and be the part of the brain where emotions are regulated. When this happens, the patient gradually loses control over moods and feelings. After that the disease moves to the brain where it makes sense to you that it sees and hears and smells. In this stage, alzheimers wreaks havoc on a persons senses that can smart and transfer hallucinations. Eventually the plaques and tangles erased the persons most gold and precious memories which are stored in the back of the brain. Near the end, the disease compromises a persons balance and coordination and in the very last stage, it destroys the part of the brain that regulates breathing. As well as the heart. The progression from mild forgetting to death is slow and steady and it takes place over an average. We may need another power source. [inaudible conversations] that is what being alive is all about. The bottom line is that what happens is that this is not a normal part of aging and it is a neurodegenerative disease that is always fatal. Twenty years ago when my husband got the disease, there were no disease modifying drugs whatsoever except one or two to deal with symptoms. Today, there are no disease modifying drugs except the four of them that were available at that time. When my mother became ill with the disease as well, it became quite obvious to me that this was what was going wrong to why would people not be responsive and understand and be offended by this disease . What i realized is that people never saw the disease because we hit our loved ones away and i need to tell you that the caregivers are the keepers of the secret and the only reason i wrote this book was to unlock a conversation that has been hidden away. And so for those of you who may not been able to be in the back, how many of you are worried about being a burden on your family . And losing dignity, being more isolated from friends and family. As well as not being able to do things that you enjoy. As well as Health Care Costs and related expenses, being in pain or discomfort. Dying and death and quite frankly, after spending 20 years, my husband and those who define yourself by your intellect and who you are, this is not a disease that you want to live with or impose upon family. The idea that you can control what happens to you with this disease, forget it. My mother, this disease slips over you as you saw the video and it flips over you in a way so that you are in and out of reality. I have my husbands copilot and his guardian and my husband has a known who i am for the last 12 years. But he knows my touch. And i have to be persuaded that he knows my touch because i lead the team and i do a 12 hour shift not every day for my husband bought for my mother as well. And somewhere deep you have to believe that you can reach a loved one in this space. A Washington Post reporter said that i said i lost my prime. Well, i said it just about that way. And he said that there seemed to be a bitter overtones that you cannot take careful of one for 20 years and be bitter, it would eat you alive. You have to find a place where you can help a loved one in this state. Research over these past several years have gotten better, but it has not filtered down to all of us. Art therapy in music therapy, its all wonderful, but it only works in a very small period of time and then you have to let it go. If you fight this disease, you will be destroyed along with the victim. What i mean by that is we all the pallets of care. We played whatever strength they have and when they cant do it anymore, you have to let it go. And i beg you to let it go because it is too frustrating on your. If you werent persuaded this is an important issue, 50 greater risk for this disease im sorry, we are having some problems with the slide. If youre overweight or have a metaphorical disorder, depression, diabetes, any type of addiction. You are 50 more likely to get this disease. Does sex matter . This is a challenge that we ran globally and we asked that question. Do you remember cardiovascular disease . Everyone assumed it was a mans disease and it turned out to be the biggest killer of women. We felt that it was important to ask that same question. Differences matter and thats one of the reasons that we ask that research question. And now that is becoming a bigger and bigger issue issue. Think about what they are learning in differences of how women respond to pharmacological substances versus men. We must tease these differences out. We have deliberately created, up against alzheimers, an entire network that respects other ethnicities and we have africanamericans against alzheimers number we have latinos against alzheimers. We have clergy and researchers as well. We need to come together as networks and raise our voices that this disease is unacceptable for our future. And the reason it is such a vague womens issue, we outlive men statistically and we are more prone to get it, but science doesnt know why. But they do know that women progress into the disease faster than men. Into fullblown alzheimers. If its on the maternal side, you are at higher risk for getting the disease. And two thirds of the caregivers in this country are women. It is unpaid care. 70 of families predicate care of loved ones at home. And sometimes there are situations that make it impossible to take care of someone at home. The caregiver gets it, Young Children are endangered by the behaviors, that is what creates institutionalization in this country. In our case, my husband was a physician as was mentioned, it a chief of hematology and he was in denial all the way into the disease. Which made it even more difficult. He was a Long Distance runner, a transix with two and a half, very disciplined, oak four languages, 200 published papers and guess what . It didnt matter. And i think that that is the most important point. In a generation we are into the lose it or use it mentality or 60 is the new 40. I would love that because i would try it every day. But we are in serious denial. And i think that that is what inhibits us for having the conversation that we need about this disease. This is the disease of our generation. 76 million of us and we are transformational and we want to do something. So why are we in arms about this disease . That will destroy our families and our lives and burden the next generation. Being in denial made it it difficult to take care of my husband. And people hideout for a long time and i could bathe in shave and dress and take my husband to a reception in washington and everybody was so involved in this town. Nobody noticed. If you kept moving, nobody noticed. My antennae are up every time i go to a reception. The woman who goes to this day and doesnt know what to pick up, or the husband who says, would you mind going and checking on my wife, shes been away too long. Or spouse is filling in for each other in their conversations when they just returned from a wonderful trip and one of them doesnt remember where they were. The creeping of the disease is everywhere. Everywhere. But we are buying into the denial and we do not want to see what we are about to live with. And we play into that denial. Lets go back 20 years. Twenty years ago the diagnostics were not as good as they are today. Today you could take a test that would tell you whether or not you have a high risk for the disease. How many of you would like to know . I need to know because i have seen what the disease does to families. I need to know because its always too soon before its too late. The endoflife conversation that is so hard around the Kitchen Table at dinner, do you know whether you put your life in order so that your family doesnt have to guess about your endoflife wishes . I will tell you that ellen goodman, the columnist from off and has had the conversation project and i direct you there because you can actually download all the forms that you will need to have that conversation. And my husband was no road map, although i do know that my husband would not have considered this living by any stretch of the imagination. And there are some people who are here to do my husband professionally and they are shaking their heads. This is a very cruel disease. The doctors just want to diagnose. Trying to get a doctor to a doctor, lots of luck. Im a doctors wife so i type up my observations. They disappear and come back and i am brushed aside. I detail the journey and i was ignored. Totally ignored. And once ignored, then i became his victim. I was denying my husband access to things that hes wanted. Try to take a porsche away from a nifty sixyearold man. We all wait too long to try to give a loved one their independence. My rule of fun is anticipated and anticipate. I went in one night old the plug on his car and i dont understand foreign cars, but i pulled whatever was there and lock the garage or in for five years my husband said where is the car and i said oh, you had to get one of those foreign cars and its in the shop. And every day he asked about his car. But my peace of mind was his independence ended when he might endanger another human being. I could not live with the idea that i had not been proactive and i would encourage anyone with a loved one that we want to give them their ability to be independent for as long as they can, but always remember the people around them and who they might endanger. When someone wanders away and that happens because the to many people that are v