Looks at the jeanette ticks behind alzheimers disease. Thank you for coming today. My name is nick sam sam bliss and i wrote a book about a family centered in north dakota that cares a vary genetic mutation that guarantees alzheimers disease, and i really pleased to say that with me today is lindsey, white house father, dean, was a central figure my book and she will speak today as well about some of the experiences hat their family and she personally have again through with alzheimers disease. When i think back to the first time i met members of the family in 2009 it really feels like im reviewing the notes i took on someone elses life. And spent a couple of hours interviewing them. And when i came out it was like i had gone through the looking glass. I was completely blown away by their story and what they were going through. And for me i was never going to be the same. Whichan is why i i decide to wa book about them. I learn from them quite a few lessons that id like to share with you today in hopes it will shed some light on where we are with this epidemic, and thats what it is, as a Public Health epidemic. I think its the Public Health epidemic of our time, even though we dont think of it or talk abouti alzheimers disease that way. Several members of the family are from north dakota as i mentioned. Several are from wisconsin. Theres something colorado, in oklahoma, wyoming. So they are spread all over. And for those of you who are not familiar with thepr book, the facts of the mutation are pretty sobering. People in the cemetery this mutation develop alzheimers symptoms in their 40s. And typically the past away sometime in the 50s. If you have the vacation you have a a 50 chance of handing t off to your children. And of the six siblings that was main focus of my book, most of them were all repairs of the time they learned this news in 2004. So there only a few hundred people in the world with this mutation, and as you might imagine they are extremely fallible research subjects. Because theyre guaranteed to get the disease, sizes available to watch the biological progression of alzheimers in realtime by scanning the brains and then call relating those images against traditional cognitive tests. And so for this reason and because of their willingness to be researched test subjects we are not at a point in history where we understand alzheimers that family have since it was discovered. So that made the story a doubleedged sword. It was incredibly tragic but at the same time it was extremely inspiring. One of the lessons that i learned from the salmon is that heroes often appeared in the most ordinary packaging. This is a family that is as Middle America is anyone youve ever met. They are teachers, oil workers. In clintons case, the physical therapist, an architect lindsay these case. An architect, a hairdresser, you name it, they are part of society. And they dont look like superheroes but what sets them apart in my mind is what they did when they were handed this extraordinary piece of bad luck. They made this collective decision as a film center theyre going to fight back. And to give an idea of what theyre up against, what they fighting back was a disease thats been around probably for as long as human beings have been around. An site is known about it since 1906, so more than a century, and hasnt done a think about it. Has not been able to solve it. Its a medical mystery. And when they were diagnosed in 2004 they really didnt know who is going to help them fight back when the maid this decision. Because Alzheimers Research is the relatively new. Most of what weve been able to do with this disease has occurred within the last ten to 15 years. For then it was like walking into battle against a monster you cant see, and youre blindfolded, and youre holding a stick and you say i dont really know whos going to helping with this but im going to fight. If i go down on going to go down fighting. For me that kind of courage really resonates because even if your monster isnt alzheimers i think weve all had our own battles, we share some of them, we dont sure others. In those moments when you feel like your back is up against the wall you can relate to what they were upte against. I think of menzies and lori who travel to pittsburgh for research every year until the point where she entered a a nursing home she was 57. She was a fiercely independent, funny, capable woman and when i met her in 2009 you probably would not know that she had alzheimers. One of the things a lot of people dont know aboutim alzheimers is this. When symptoms begin to start to roll and shut more prominently, travel makes them worse. So you have difficulty reorienting yourself when you return home. Every year that lori came toe. Pittsburgh for research, it was shortening the time that she had left with the three daughterss and her granddaughter and her husband. And she knew that. She was giving at that time, and she did it anyway. I asked her why, she said because this is my salvation. She did it because she wanted to see her daughters and she wanted to save my sense and she want to save your daughters and sons. You know, she knew that what she was doing was not going to help her. The site wasnt there yet. When she couldnt fight anymore she donated her amazing brain to research foror further study. And i think about dean who is lindseys father. When he found out he had the disease, he announced his going to live his life as well as a good front long as he could, and instead of dwelling on this tragic occurrence in his family, he decided focus on what he held control and everything had that he was grateful for. So he takes road trips with his son and he danced at lindseys wedding and to travel to australia with his lifelong best friend, and he swam with dolphins. Last year he went to toronto and this past summer he went to england to address International Conference for the Alzheimers Association to bring attention to this disease. This past spring dean buried his closest sibling who is his brother doug. Doug was 19 months older than being, and on the same day after that funeral, when he served as a pallbearer at actual same day he asked me to sit with him as a nurse injected him an experimental drug that is older siblings were too late to get. I think about their sister karla who did not inherit the gene, and theres a time when karla was a homecoming queen and the cheerleader and easily intimidated and she would describe yourself as a ditz. All that changed when her siblings were diagnosed. She devoted the rest of her life to Alzheimers Research. Shes the one that steered her siblings intoli the studies. And she was a person that it reached out to, the id of the book. So without her you would know anything that im telling you, and science would not even able to study the family of this disease than such great detail. The second lesson that i learned from writing this book is that in order to succeed, you have to fail. I met a lot of brilliant doctors in the course of this research, and the funny thing about them was how im assuming they all were if they really didnt care about letting you know how important they were. They didnt really care about credit or in many cases even compensation. What they cared about was science, and what they care about is finding that cure. This isnt a glamorous field, and academia is not a place where anybody goes to get rich. But you do still have to produce in order to survive there. So back in pittsburgh there was a doctor named bill and hes been working there since 1987 and the estate alzheimersin Disease Burden much his entire career. In 1994, he decided he is going to take on the holy grail pick is going to figure out a way to look at alzheimers in a living brain. He spent several years failing creepily. The only project hes working on for all those years trying and failing and a lot of his colleagues recognize how important it was to be able to look at alzheimers in a living brain were kind of quietly on the sidelines watching them but there were not willing to do it themselves because it was very dangerous for their careers. It would be easy to loset your job that way. But it was important. It was important because up until then the only way that we could look at alzheimers disease was on slide under microscope after a person is already died. So you dont really know too much about how the disease has been progressing biologically, and thats one of the reasons why we were notw able to make much progress in solving it. So dr. Klunk had a breakthrough, and on valentines day 2002 he was able to use radio tracer that he developed in a living person. You get an ejection. They do a scanng of your brain d lights up. It happened because he is willing to fail. I think also another doctor, ang doctor from columbia, when he was a young man early in his practice he stumbled across another family who had the same genetic mutation as the demoes and this family is really large. He spent years studying the. He visited them by horseback through dangerous territory and jews kidnapped more than once and so were members of his team and they kept the Patient Samples cold in the river to preserve the. He worked in obscurity many years trying unsuccessfully to get anybody to Pay Attention to what he found. But once dr. Klunk developed his radio tracer, pharmaceutical Companies Began to develop drugs to target the underlying biology of alzheimers disease. And the doctors were taken very valuable because the colombian family offered Perfect Research subject that you are guaranteed to get the disease and can be tested in utero and find out youre going to get it. They can startas looking at your brain when youre in your 20s and watch as the disease unfolds and target that disease with experimental drugs designed to prevent it. So today the colombian family and the demoe family are part of a large, its not large because of two small population but there theyre each part ofo different drug tiles that run parallel to each other testing drugs it target and alloyed and the researchers were in charge of the studies are comparing notes and best practices. So theyve been able to bring the population and thed, science together. En with that id like to take a break for him and introduce lindsey who can explain a little bit about her personal experience with this disease and what its been like for her. Wednesdays generation is actually in the unique position because now that they know unlike their parents that this s a mutation thats kind of stocking their family tree, the decisions for this generation are very different and ith will let her speak to that. Just want to thank you all for being here today and supporting this book and having interests in the store and also in my family. Its very encouraging and its so important for the advancement of finding a cure for alzheimers disease. As niki said my father is dean demoe and is a gene for early onset alzheimer diseasehe of ths means either a 50 chance of developing alzheimers in my 40s or 50s. I am 31, married and and work as a physical therapist in minnesota also have a younger brother younger brother. Hes 28, and a younger sister was 21, and the equally have that 50 chance for alzheimers disease. My brother and i have been tested as part of the research study, but we have chosen not to know our results at this time. Most days i would say im perfectly content with not knowing what that status is because there is no treatment for alzheimers disease. Other days if i have trouble finding the right words or cant remember where i put my car keys, i have a little bit of panic and think, oh, is this alzheimersin disease . I think i see a lot of people nodding their heads. Youve had that thought before, but most people dont start to think that way until they are in their 50s,e 60s, 70s. I have been thinking that since my 20s. So theres a little bit of a difference at that point. I was a sophomore in college when my dad tested positive fori the gene. Our entire family was really certain that he did not have the gene. So his two older brothers had tested positive for the gene already, and he and his older sister, karla, when the process of becoming their power of attorney. So he did it more as a formality just make sure he was negative to be theiroc best power of attorney. So it is really a shock to find out that he was positive, and eventually a a greater shock wn we found out that five of the six siblings had the gene. When we found out the results, i was only 19. Even the thought of being 40 seemed like a lifetime away. My dad wasnt showing any symptoms at the time, and after i was through the initial shock, really i didnt think very much about it. I was busy with college. I didnt went on to grad school, and during school i was working two to three different parttime jobs over just enough time to think about it. I didnt for a while. After i finish grad school so i decided i was ready to kind of address my chances having alzheimers disease, and what can i do about it now. So i enrolled in the dahmer inherited alzheimers network, or diane, observational study as soon as i finish grad school. And i went to my first study right after i finished taking my boards and right before starting i first job as a physical therapist here what at this i found out the results of my boards board and those were positive results that ask him so that was great. But at this first visit is worthy to the blood to test my genetic status. And at the time i was not sure that wanted those results. Before i left for that visit i did speak with my dad, and asked him about his decision to find out his steps and i asked him does he regret finding out. He told me then that he did regret find out his status because he, too, was so sure that it was going to be negative. So after a lot of thought and consideration i decided that actually did not want to know and that there was still hope that it would be a negative result. And i could be at peace with that. So now a few years later my thoughts kind of change day today on whether i want to know if some days i still actually do not want to know, and other days i feel like i do want to know because it is something thats always hang over you like a dark cloud. It never really goes away. So theres some days where i can go, i can go weeks without thinking about it, then there can be days when thats all you think about. So you have to go, you kind go back and forth but i very much a planner by nature, and so a lot of times this uncertainty kind of throws, messes with my personality and little bit. So there are a lot of things i think about when it comes to finding out my genetic status. For me the main thing is how its going to affect everybody else in my life. I feel like i am in a place mentally where, whether the results are positive or negative, i feel like im prepared to handle it and i would be okay. What stops me from finding out is how its going to affect those around me. So my husband, my siblings, my parents, my friends. Finding out just doesnt affect me. It affects all of them as well. My husband is incredibly supportive, and he will stand by my decision whether i i decideo find out or not. And for my siblings i dont necessarily want my decision to affect their decision. So being the older sibling, a ty look at me as a role model, andn at times although my path. And i dont want to be influencing their decision. Its a very, very personal decision, whether to find out you have this gene or not, and its one that has to be done thoughtfully and kind independently of everybody else. When it comes to my parents, my hesitation is im not sure if they would be able to handle the guilt if it was a positive result. And my dad has specifically said in other interviews that he doesnt want us to find out our status because he doesnt want to know. But on the other hand, it over to come back negative it could save a lot of worrying and what this for myself and for my family. The other thing i think about when activating is if i do have alzheimers disease, i could use are going to be limited so i would want m to make the most of those years. My dad stated onset was 40 years old, so theoretically that would be my onset as well. And the couple of years i have tried to worry less about saving money and paying down my student loan debt, which was really hard for me to do because i a planner and have to do everything this way, and you pay off your bills faster so you get that debt paid down. So instead i been trying to find a balance of being financially responsible, but then taking time for trips or events that note i wouldve said no to because they cost too much money. So whether or not i decide to find out my status, i have decided im going to try to adopt more of the philosophy of living life to the fullest and taking that time to make memories with the people that i care about. Because thats whats important no matter what that test says. So im very, very thankful for the amazing support system that have with my family and my dad and his my siblings have been amazing role models for not only myself but my siblings, my cousins as well. They were given what seemed like a hopeless diagnoses and have risen to the challenge, participating in research, drug infusions, cognitive tests, ands many, many other things, all to help their children. Very well knowing but its not what you tell them. So is not a hard decision for me to start the research because theyd lead the way for us all. And because of their sacrifices, there will be a cure for alzheimers and will always be hope for the future. Thank you. [applause] thanks, lindsey. At this point you might be asking yourself a question that it actually asked myself when i first started. If alzheimers is so widespread, why am i just hearing about it now . So alzheimers disease was first discovered in 1906, and by the way, the person in whom it was discovered at the same genetic mutation as the demoe ham and she was 56 when she died. For the next six years after the discovery, science essentially ignored the disease. They thought it was a rare affliction and different from what we called senility in older people. So that allowed alzheimers to continue unchecked and was really no Research Funding associated withff it. In the mid1960s a study proved that senility is actually in most cases alzheimers, and that its a disease impacting millionsin of people. But still the Scientific Community and the public really didnt give it a whole lot of thought. Because the reality is when you think of a disease as affecting mostly older people, we do pay less attention. In 1976 a california neurologist wrote an editorial for the American Medical Association that refer to alzheimers asur a major killer. It was this editorially gave birth to theme Alzheimers Association, and started building some support for research but probably the two that led to us begin to recognize the severity of this epidemic were these, people are living longer. According to the Social Security administration, a man who reaches 65 today can expect to live on average until 84. 3 years old. A woman who turns 65 today can expect to live c on average 86. 6 years old. Those are just averages. So about one out of every four, c65 will live as age of 90, and one and oneer out of ten will nt live past 95 which is wonderful news we are living longer. Until you consider this your fy of us in this room, the greatest risk factor for developing alzheimers disease is aging. So once you turn 65, your risk of developing alzheimers doubles every five years. After you 285, the risk of developing alzheimers is close to 50 . So that brings me to the second factor i mentioned. On new years day 2011, the First American baby boomer turns 65 every day since then, 10,000 more people have hit that milestone. There are currently 5 million americans with alzheimers is our nations sixth leading cause of death. It kills more people than breast and Prostate Cancer combined. Its the only disease and the top ten colors that doesnt have any way to slow it down or any way to stop it. By the time we hit the middle of the century in 2050, if we dont find a way to prevent alzheimers, an estimated 13. 8 million americans are going to have the disease. If those statistics scare you, good. Because i believe wholeheartedly that we as a society need to understand what we are up against. Alzheimers is is the most expensive disease in america. Even if youre lucky enough to live a long life thats never touch by alzheimers, its going to impact youme because you are going to pay for it. Pa in 2016, the tab for direct calls to our society for alzheimers was about 230 billion. It costs more than Heart Disease and it costsis more than cancer. So guess who is paying that bill. You and i are. In 2016 medicare and medicaid spent about 160 billion on alzheimers care, or about one in every five medicare dollars. By 2050 if we dont find a treatment for it it will be one in every three medicare dollars. So i told you what the demoe ham is doing what some of the doctors are doing, but we all have to be in this fight if were going to make a difference. What do i mean by that . Well, in 2015 b the government spent 5. 4 billion on cancer research, 1. 2 billion on Heart Disease, and 3 billion on hiv aids. Those are paying off because death rates in all those diseases are declining. That same Senior Research fundr alzheimers was about 566 million. And the death rates are climbing, and as i pointed out, so are the costs. Alzheimers disease is the medical pandemic of our time. He doesnt care about your income. Doesnt care about your politics or your education or your religion. It doesnt care if youre a celebrity. Its an equal opportunity killer. I do believe that we as human beings are capable of committing other and feeding it, and we have no other choice, because whether its in your family tree or not, itav is going to impact you. What other doctors i do get for my book was a soviet immigrant named dimitri. Is a first person who discovered any genetic mutation that guarantees alzheimers. We know about three of them. At the time the more the 20 Research Teams around the world that were trying to do the same thing as dimitri. There were later other scientists who took credit for his discovery, and he doesnt care. This is what he told me. If its only people are workingn a problem, it will be solved. Personally, i want to see as many people as possible working on this problem. Whether they are Research Scientist or they are universities that allow them to pursue those answers or politicians allocating the funding, or its a superstar like Glen Campbell who allowed his private pain to be public summer people understand whats happening, or its an ordinary mother was getting at the last few years of her life to be guinea pig for research, or itss samantha subjects himself to Experiment Research on the day he buries his brother. Because theres a singular goal, that is to save the world. And with that, lindsey and i welcome your questions. I would ask if youre all going to ask questions please come to the microphone in the center. Thank you very much. [applause] first of all, thank you both for coming up in speaking about this disease of alzheimers. Lindsey, i especially appreciate your being here because one of the questions that is when asked was how is the family treating this . What do thehe children think . So thank you very much. I am especially interested in alzheimers because i have five friends that range from 85 to 70 that have alzheimers. One of the things thats, even though they dont all live in the same geographic area, among them all the smoking. Nicky, as when asked you if you know of any research that correlates smoking and alzheimers . Thats a great question, thank you. I dont know of anything specific to smoking but we do believe that with a lot of complicated diseases alzheimers has an bimodal factors as well as genetic. So there is a a thought, theres a link between heart health and brain health. So smoking could be a factor there. Enchantress a specific study, zoning in a smoking im not aware of one. That doesnt mean there isnt one. Thank you again for speaking out. So it seems like theres been changed in recent years in how people define alzheimers or the extent to which they label people with Cognitive Impairment as having alzheimers took my mother is in a situation where yes, its beene clear to us for some peers that sheds a degree of Cognitive Impairment, butas e just saw for the first time her position labeled it alzheimers. I was kind of taken aback because i think i thought of alzheimers is something qualitatively different than simply memory loss and Cognitive Impairment. You want to talk at all about how that has shifted in recent years . Are you aware of that . Yes, i am. So i think your experience is actually a very common one. People will say ive had several people say to me, my Family Member has dementia but its not alzheimers. So dementia is simply a catchall explanation or term that almost always describes alzheimers. Theres a few things like a stroke or certain other illnesses thate will cause dementia like symptoms, but with alzheimers we are starting to understand more how to detect it in the living brain cannot just to these scans but two things like blood test. They are developing blood test so that you would be able to less invasively and less expensively diagnosed alzheimers, whether thats what happened with your mother isi dont know. But typically is done through cognitive testing and id est and that overtime. So if her decline was happening over a number of years, its almost always alzheimers. People dont like to call it alzheimers, and there was a time when people didnt like to call it cancer either. Does anybody in this room remember the term the dixie . So this is that big a, right . How has your situation impacted on your decision of whether or not to have children . I knew that one was going to come up. I do not have any children, and really i dont think that alzheimers is a factor for that. And, you know, in the back of my mind maybe there is some of that, but just at this point in my life my husband and i just havent felt that need yet to have any kids, and we havent said we are not having kids. We just dont have any yet. And i dont know if that alzheimers cloud, if that subconsciously makes me feelif like im not ready for children, but it dont feel like alzheimers has affected my decision. I know for some people that is a factor. Because there is that chance of having the gene. Hello. Can you hear me okay . Sure. My mom has a probable alzheimers diagnosis, in her 90s. I particularly like the combination of sort of the back row context but with a very personal story behindom it. So one of my areas of study in academia was public affairs. Im kind of wonky i need to get better know if any of you have any guidance for average People Like Us to be more engaged in the civic or the policy arena here are the things we could be doing to support our local alzheimers organizations . Should we be calling certain policymakers and advocating for more research of dollars . I mean, either key policymakers in washington or in madison, or in minneapolisst. Paul that we might go to to try to kind of up the pressure from the grassroots to correct some of those imbalances in research that you identified . I would say probably one of the first things would be getting involved with your local chapter of the Alzheimers Association. They are a really great resource of who to contact in terms of your specific legislators or government officials, and then others ways you can donate, volunteer, just get involved. I wouldld also say, im wonky by nature, too, and i would say that any type of lobbying of your own Public Officials frequent, insistent lobbying is helpful here but the reason that a group like the Alzheimers Association also aarp are valuable is because lobby groups do know, as lindsey mentioned, who specifically to target and they would know if there are bills in the pipeline for funding, and the more support they have behind them, the more influential that are and the more they have peoples fears. Ears. Theres money for big eyed looking animals and theres less money for things that embarrass people, whether that was alcoholism, but it was mental health. And i think theres a sense about alzheimers people are uncomfortable dealing with it. My wife and i get hospice volunteers. We see people like that. Im wondering, some out theres a stigma even though you have described an entire genetic, biological pandemic, aids, groups acting up to fight the stigma there can you talk about repositioning or dealing with the discomfort . I think when one is confronted with the mental decline that makes people uncomfortable. Do you want to address this first . Sure. I think one of the biggest things is what were doing right now, talking about it. I think the more you talk about it and the more that you get out there and say yeah, this is alzheimers, its in my family or this person my family has a, the more you talk about, that statement start to go down. Thats part of the goal of myself, my cousins, my siblings, why would want to do these guys that thinks is to help decrease that stigma. The other thing id like a image is it isnt just a statement of mental illness, right . Its also the fear, especially if like, for example, in nancys family is a people are still of working age. Onere of lindseys answer past e did a longterm care insurance. Thats the coming scarcity because Insurance Companies are ahead of us on this one and they know its expensive. So its harder to get you dont have it, youre really into a lot of trouble, the younger you are when this disease comes along. Some people are afraid to say the have this diagnosis because they are afraid of not being able to get insurance. The stigma goes away when we talk about it. Was the same with hiv. That was an excellent point. Because people speak up and they act up and say this isnt something that makes me less than you. This is you. This is me. I dont know who may for the news story a couple weeks ago, there was a pharmacist on capitol hill who says hes been filling alzheimer medication for members of congress. In you asked to backpedal because, right, whats the implications . If thats the case then theres something wrong, right . Well, you know what i would really love it if somebody who actually has those medications to say were going to put hipaa aside. Im someone who has to take that medication. Because ofsi that medication dos not solve the disease. It cant stand her symptoms. It doesnt make you better, okay . How about if we put some funding into something that is making youms better . Yes, sir. I went and sat in a Doctors Office and listen to explain another disease called lewy body dementia. Ive never heard of it before that day. Since then every time i turn around, very quietly somebody is mention, i think robin willias died of that. Are these parallel diseases is a whole family of others out there in addition to alzheimers and lewy body dementia that a very close together . Howw do we tackle these as a group, not just alzheimers alone . Thats a great question, and yes, to answer the first part of your question, yes, they are all similar. They are cousins of each other. One of the doctors that it interviewed for this book, eric come had an interesting take on this picky set we know more about outerspace and we know about the inner workings of our own brains. Its very, very difficult to conduct Brain Research for ans number of reasons come some biological and some related to funding. How did we tackle it . We spend more moneyog on the funding. Scientists are like anybody else. They cant work for free. For every great idea out there, every 30 great ideas out there, one might have funding typically, Funding Sources will go with the safest. But the safest one might not be the groundbreaking one. So the. Answer really does come back to funding. Its what drives all research. Thank you very much. The question i have is, is the research to suggest at all about our food supply perhaps makes the symptoms worse, causes perhaps might even cause a . To the stress eat certain things as to other things because certain foods might make it worse . Im just curious if theres research on that front . Theres a lot of recommendations kind of like lifestyle modifications and things like that, yound know. Eating a healthy balanced diet. I i dont anything in terms abot food supply, but you know, eating more of like lean meats, fruits, vegetables, those kind of general nutrition recommendations that we hear quite a bit picky exercise. Like niki mentioned before, heart health is brain health. Anything thats healthy for the heart is healthy for the brain. Doing cognitive challenges, crossword puzzles, things like that, getting good sleep, stress reduction. Theres lot of those lifestyle things that are recommended to help with prevention. I dont know necessary about specific like food supply itself. The food supply like what i dont know too much but i do know what specific recommendation, as lindsey said with eating healthy, is a cholesterollowering diet. There is believed to be a link between analogue which is one of the abnormal proteins in alzheimers, and cholesterol production. But again, these are all very much fluid field of research. You know, as with cancer, for example, there are some genetic factors in cancer but there are environmental factors as well. Same thing with alzheimers. Are there ways that when someone does get alzheimers or any other type of dementia, ive seen even with what my own pars take care of my grandparents, at kind of comes to be like a teacher role almost, and that person wants to be really independent and acts like they used to. But then you have the challenge of having to kind of teach people things that they knew before. And what is the best way that youve seen to kind of make that better, i guess . I think thats, its a tough thing, and i think one of the biggest things is having patience. Because, you know, one of the things thats recommended is if somebody is confused or their kind of in their world but if you like its 20 years earlier, you go too thin. You go to the place where they are at, and you live in their reality. Its hard to sometimes have that patients. My dad is still doing very, very well. Hes still working but i will call him on the phone and we talk 20, 30 minutes and within that 30 menswear probably the same 45 conversations. A cycle and we say the same thing here for a while it took me a while to get okay with that, that just like okay, that come ive got to go. And just to sit in those conversations and have them a few different times because at some point that conversation will not be there. I do think like just in terms of reteaching him thinks is taking that meant to step back and have that patients to kind of be in the world and realize that even though youve told in this 500 times, they dont remember. Lindsey has got more firsthand experience with this because of her father, but i do know that it varies as with anything for patient to patient. Some people become very agitated very easily, and often one of the tragedies of alzheimers is they will often be that way with people they care about the most, the spouse or best friend. You have to be, you have to have a thick skin to take that. And remember its the disease and not you, and not in hating you. Easy to say, difficult to do. Its one of the cooler parts of the disease. Crueler. My question goes along with what you were just saying. Could you talk a little bit maybe both of you about support system for caregivers . Because in my situation my sisterinlaw developed alzheimers in her early 60s. My brotheral retired early in order to care for her, and its a 24 hour a day job, in terms of supporting him when we live in different states. Do you have some advice or suggestions of who to contact to provide that sort of support . Again, i think, you know, another great resource for that would be the Alzheimers Association. They know, because everyrc air s going to have slightly different resources. I know where i live theres a couple of Nursing Homes in town that offer like daytime respite services. So if you have errands you need to run or appointment you need to go to, you can bring your bug when there and care for them during the day, and then you can, sometimes just give yourself that little break. Other places may have volunteer programs with or things like t. I think that maybe one of the first places to check with because they will know the local support system. I would echo what lindsey said about the Alzheimers Association as a resource, but a different question because i think that you touched on something that isth sort of an underappreciated side effect of this epidemic, which is the toll it takes on caregivers. Lindseys grandmother gail had five of her six children, her husband, her motherinlaw, her brotherinlaw, her sisterinlaw and several of her nieces and nephews affected with thisth disease. Even though she didnt personally have it, it absolutely impacted her. I think significantly impacted e her heart health. The stress from kerry for an alzheimers patient, especially in a 24 hour situation like you described, is astronomical. Friends who are able to even just put in a couple of hours helping taking that person to do something if they are still able to do that, those few hours could be a godsend to the persn that is the caregiver. We dont have a full solution for that as a society yet. You will see in some larger cities a lot more respite care and nursing home set up for memory care. But i dont think that its going to meet they need yet. And i hope that if we solve the disease, that need wouldnt be there. Just a couple of strands in reaction to previous q a. In terms of coping with a loved one with the disease, i remember theres an npr report about a family, a young couple that had gone to help i think the wifes mother with her dementia, and the soninlaw apparently had a background in standup comedy and especially in spontaneous and improvisational comedy. And he found that, as you arene saying, lindsey, going with the flow and using what the person living with the disease givese you in terms of memories, whatever it is, just go with it, and that is a much better way of responding that i found myself with my mom trying to refute o some other fantasy voices she was experiencing and it doesnt work. Just going with it like a standup comedian or improvisational comedian. The other was theres a project based in new york city that has ties about the country, its called the alzheimers poetry project, and its a way of helping People Living with the disease as well as their caregivers understand whether dealing with and tapping into deep rooted memories through poetry. You know, music can serve the same function. I came to a function in this very room where they did local poets read some of their pieces, and then the facilitator had people in the audience respond to some of those messages and themes, and compose a collective of poem together. Its really a nice way to remind caregivers that there are memories that are still alive and well that can be tapped into that can enrich the lives of the person living with the disease, and give caregivers a sense that these people, as diminished as her cognitive capacities are, there is still a lot of which is in the lives of a lot of memories that can be tapped and found very rewarding. So its the alzheimers poetry project. Thank you. One thing i also wanted to mention personal in response to your early question about what can people do to promote research, theres actually a Large Research group at the university of wisconsin in the department on aging i think, or institute of aging. That is doing a lot of research on alzheimers. What are the things i know there is a registry that includes both children of peopley with alzheimers as well as children whose parents do not have any dementia, and you know, i think that something that we can all do is sign up for the registry. I think it involves various testing, but its a way to advance the state of knowledge in the area. Thats a great point. There are few such registries around the country. I know in phoenix, the alzheimers prevention initiative. They have registry related to that. Because the czar, partly believe because these are academic centers, you know, the problem i mentioned earlier about worrying that your status would be disclosed i think would be protected in that situation, which is important to many people. But you cant, as i learned at a speaking engagement over the summer, you can actually find out through a home genetic test whether you carry a genetic predisposition for alzheimers. This isnt the same that what lindseys family has. This is a gene called cp oe four. If you have two copies of it, one from each of the concepts mythically elevated risk for alzheimers sf thats not the d of finger family physician typically is going to test for or father would test for because there is a treatment for it. Is potentially very disturbing and lethal knowledge. In home genetic test, there really isnt any filter and theres no genetices counseling soy woman stood up at a q a at a talk on 6 i have two copies and shatter home genetic test and she said what do i do now . So the reality is that we cannot open that pandoras box in the privacy of our own homes, and our Healthcare System has not caught up with that yet. So we better get cracking on that. Because the answer is, you know, you may be have to disclose that if youre going to try to get insurance. And do you want to know what she was only in her 30s. I risk iss about as elevated, if you have the gene for breast cancer, its the same risk. So its up there. You know, this bottle is here. Its here to stay and is not going away. So weve got to confront it by, i cant emphasize that enough. Its the call to action for recent get anybody in this room will be touched by it in my own family, my own biological family, im notam aware of anyby who has alzheimers and its the most pressing issue to me anywhere. Any other questions . Okay. Thanks very much for coming and to spend your time with us today. [applause] thank you to them and thanks to all of you. Niki and makes it will be out in the sign. If you have in it, i want to signed. We will reconvene at 1 30. Thanks so much. [inaudible conversations] hello, everyone. My name is conor moran, director of the wisconsin book festival, what to think you offer coming to see dave levitan today for his book not a scientist. Before we get started i do want to thank the couple of people picked this is the 15th anniversary of the wisconsin book festival. So many authors, so many attendees and so much time h