[inaudible conversations] next up from the wisconsin book festival, Niki Kapsambelis looks at the genetics behind alzheimers disease. Thanks for coming today. My name is Niki Kapsambelis and i wrote a book called the inheritance which follows a family centered in north dakota that carries a rare genetic mutation, and lindsays father dean was a central figure in my book, lindsay will be speaking about the experiences her family and she personally have gone through with alzheimers disease. When i think back to the first time i met members of the demo family in 2009 it feels like i am reviewing notes i took on someone elses life. We did not know each other, did not know about alzheimers disease or how widespread it is or how lethal it is, was just a journalist, on assignment in pittsburgh, went into their hotel room, interviewing them. 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 which is why i decided to write a book about them. I learned from them a few lesson this in hopes it will shed some light on where we are with this epidemic and that is what it is, a Public Health epidemic. I think it is the Public Health epidemic of our time even though we dont think of a talk about alzheimers disease that way. Several members of the family from north dakota, several are from wisconsin, some in colorado and oklahoma, wyoming, they are spread all over. For those of you who are not familiar with the book, the effects of their mutation are sobering, people in the family who carry this mutation develop all dimers simpsons in their 30s and they pass away in their 50s. If you have the mutation you have a 50 chance of handing it to your children and six siblings that were the main focus of the book most were already parents at the time they learned this news. Only a few hundred people in the world with this mutation and they are extremely valuable Research Subjects because they are guaranteed to get the disease scientists have been able to watch the biological progression of alzheimers in real time by scanning their brains and correlating those images against traditional cognitive tests so for this reason, their willingness to be Research Test subjects we are at a point we understand alzheimers, that makes it a but doubleedged sword, incredibly tragic but extremely inspiring. One of the lessons, they appear in the most ordinary packaging. There were teachers, oil workers in this case, physical therapists in this case, an architect, hairdresser, you name it, they are part of society. They dont look like superheroes but what sets them apart in my mind is what they did when they were handed this piece of bad luck. They made a collective decision as a family to fight back. To give you an idea what they are up against, what they were fighting back was a disease that has been around as long as human beings have been around and science has known about it since 1986 and hasnt done a thing about it, has not been able to solve it, a medical mystery. When they were diagnosed in 2004 they really didnt know who was going to help them fight back when they made this decision because the research is relatively new. Most of what we have been able to do has occurred in the last 10 to 15 years. And walking into battle against a monster, they are blindfolded, and dont know that but im going to fight. And that carnage, and we all had our own battles, we dont share others. And relate to what they were up against. And research every year to the point she entered a nursing home she was 57. She was a fiercely independent, funny, capable woman and when i met her in 2009 you would not know she had alzheimers. One of the things a lot of people dont know about alzheimers is when a persons symptoms start to roll, then travel makes them worse. And when you return home, when lori came to pittsburgh to do research it was shortening the time she had left with her three daughters and her granddaughter, and giving upset time and did it anyway. And this is my salvation. She did it because she wanted to save her daughters and to save my sons and save your daughters and sons. She knew that was not going to help her. She donated her amazing brain to research for further study. About dean, who is lindsays father, when he found out he had the disease, he would live his life as well as he could as long as they could and instead of dwelling on this tragic occurrence in his family he decided to focus on what he could control, everything he had he was grateful for so he takes road trips with his son and danced at lindsays wedding and traveled to australia with his best friend and swam with dolphins and last year went to toronto and this past summer 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, doug was 19 months older, and on the same day after the funeral, when he served as a pallbearer, that same day, he asked me to sit with matt a nurse injected him with an experiment will drug his older siblings were too late to get. I think of their sister carla who did not inherit the gene and there is a time when carla was a homecoming queen and a cheerleader and was easily intimidated and would describe herself as a ditz. That changed when her siblings were diagnosed, she devoted the rest of her life to alzheimers research, shes the one who steered her siblings into these studies and she was the person i reached out to, the idea of the book, without her you would not know anything, science would not be able to study this in much detail. The second lesson i learned from writing this book is in order to succeed you have to fail. I met a lot of brilliant doctors in the course of this research, how unassuming they are, they didnt care about letting you know how important they were, didnt care about credit or in many cases compensation. What they cared about was science and finding that your. This isnt a glamorous field and academia is not a place anybody goes to get rich but you do have to produce to survive. In pittsburgh there was a doctor named bill clunk who has been working there since 1987 and studied alzheimers disease pretty much his entire career and in 1994 he decided he was going to take on the holy grail, he was going to look at all dimers in a living brain. He spent several years attempting this endeavor and failing repeatedly. The only project he was working on, trialing and failing and a lot of his colleagues who recognized how important it was to look at all dimers a living brain were quietly on the sidelines watching him but not willing to do it themselves because it was dangerous for their careers, it would be easy to lose your job that way. But it was important. It was important because up until then the only way we could look at all dimers disease was slides under a microscope after a person died so you dont know much about how the disease has been progressing biologically and that is why we werent able to make much progress in solving it so doctor clunk had a breakthrough and on valentines day 2002 he was able to use a radio tracer he developed a living person, you get an injunction, lights up amyloid plaques in your brain which are one of the signatures of alzheimers disease, looking at that 15 years, 20 years before your symptoms occur, it was a game changer and it happened because he was willing to fail. Also, doctor francisco a doctor in colombia, when he was a young man early in his practice he stumbled across another family with the same genetic mutation and this particular family is really large, and often visited them through dangerous territory and was kidnapped more than once and so were his of his team and they keep Patient Samples cold in a river to preserve them and worked in up security for many years, trying unsuccessfully to get anybody to pay attention, and in alzheimers in a living brain the pharmaceutical companies to develop drugs to target the underlying biology of alzheimers disease, to become very valuable, the colombian family offer perfect Research Subjects, if you get the disease and can be tested in utero and find out about it, when looking at the brain like in your 20s, watch as the disease unfolds, experiment will drug designed to prevent it lose the colombian family and demo family are part of a large, not large but dealing with small population, and testing drugs to target amyloid, and best practices, the population and science together. With that, i want to introduce lindsay who can explain about her personal experience with this disease, in a unique position, unlike their parents this is a mutation stocking their family tree. The divisions for this generation are very different and i will never fix that. I want to thank you for being here, supporting this book and having interest in the story and my family. Very encouraging and so important for the advancement of finding a cure for alzheimers disease. My father is dean demo who has a gene for earlyonset alzheimers disease, in the 40s and 50s. I have a younger brother who is 28, the one, and a 50 chance for alzheimers. My mother and i have been tested as part of the research study, most days, perfectly content with not knowing with the status, there was no treatment for alzheimers disease. If i have trouble finding the right words, had a little panic and this is alzheimers disease. I see a lot of people nodding their head, you had not thought that before but most dont think that way until they are in their 50s, 60s and 70s which i have been thinking that since my 20s. There is a difference at that point. I was a sophomore in college when my dad tested positive for the gene. My entire family was really certain he did not have the gene, is two older brothers tested positive for the gene already and he and his older sister carla were in the process of becoming power of attorney. He did it as a formality to make sure he was negative to be their best power of attorney, it was a shock to find out, to find out five of the six siblings have the gene. And i was only 19, and being 40 seemed like a lifetime away. And showing any symptoms at the time, and that initial shock, and think very much about it. I was busy with college and went on to grad school, during school, parttime jobs, and didnt for a wild. After grad school, i was ready to address my chances of having alzheimers disease, what can i do about it now . I enrolled in the alzheimers network, observational study as soon as i finish grad school and went to my first visit after i finished taking my board and before starting my physical therapist, at this visit i found out the results of my board and they were positive results that i pass so that was great. They drew the blood to test my genetic status. I was not sure i wanted those results. Before i left for that visit i did speak with my dad and ask him about the decision to find out. And to regret finding out. He did regret finding out his status because he too is so sure it was going to be negative. After a lot of thought and consideration, i decided i did not want to know and there is hope for negative results and be at peace with that. A few years later, my thoughts change day today, whether i want to know. Some days i do not want to know and other days i feel i do want to know because it is something always hanging over you like a dark cloud. It never goes away. There are some days i can go weeks without thinking about it but there can be days that is all you think about. You go back and forth. Im very much a planner by nature. A lot of times this uncertainty throws messes with my personality a little bit. And finding out my genetic status, it will affect everyone else in real life. I feel im in a place mentally, and prepared to handle it. When i stopped finding out is how it would affect those around me. And my parents, my friends, finding out doesnt affect me, and incredibly supportive, and for siblings, i dont want my decision to affect their decision. Being the older sibling they look at me as a role model and at times follow my path, i dont want to influence their decision. It is a personal decision whether to find out if you have this gene or not, has to be done thoughtfully and independently of everybody else. When it comes to my parents, my hesitation is if they would handle the guilt if it was a positive results. He doesnt want us to find out our status because he doesnt want to know. And if it were to come back negative, it would save a lot of worrying for myself and my family. The other thing i think about when debating if i want to know, if i do have all timers disease, my good years are going to be limited. I would want to make the most of those years with my dad at age of onset is 48 years old, in the last couple years, i tried to worry less about saving money and paying down my student loan debt, and doing everything this way, paying off your bills faster to get the debt paid down. Instead ive been finding a balance between being financially responsible, then taking time for trips or events but normally i would have said no to because the cost too much money. Whether or not, i decided im going to try to adopt more of a philosophy living life to the fullest and taking that time to make memories of the people i care about, no matter what the test says. I am very thankful for the amazing support system i have with my family and friends, my dad and his siblings have been amazing role models for not only myself but my siblings, my cousins as well, they were given what seems like a hopeless diagnosis and have risen to the challenge participating in research, drug infusion, cognitive tests, lumbar punctures and many other things to help their children, it is not going to help them. It was not a hard decision for me to start the research because they led the way for us all and because of their sacrifices there will be a cure for alzheimers and hope for the future. Thank you. [applause] thanks, lindsay. By this point you might be asking a question that i asked myself when i started, if all timers is a widespread why my just hearing about it now . Speech is all timers disease was first discovered in 1906, and she was 56 years old when she died. The next 60 years after that, ignored the disease. It was an affliction different in senility, to continue unchecked and no Research Funding associated with it. In the 1960s the study proved senility is in most cases alzheimers disease impacting millions of people. Still the Scientific Community and the public didnt give it a lot of thought because to think of the disease mostly older people, to pay less attention, in 1976 a california neurologist wrote an editorial for the American Medical Association that referred to alzheimers as a major killer in this editorial gave birth to the Alzheimers Association, probably the biggest factors, the severity of this epidemic, People Living longer according to Social Security administration, a man who reaches 55 can expect to live on average until 84. 3 years old but a woman who turned 65 today can expect to live on average 86. 6 years old and those are averages. One out of every four, 65yearolds will live, one out of 10, wonderful news living longer. Until you consider this. For any of us in this room the greatest risk factor for developing all timers disease is aging. Once you turn 65, the risk of developing alzheimers doubles every five years and after you turn 85, your risk is close to 50 , that brings me to the second factor, on new years day 2011 the First American baby boomers turned 65 and every day since then, 10,000 people had the milestone. There were 5 million americans with alzheimers, venetians sixth leading cause of death, kills more people than breast and Prostate Cancer combined in the only disease the top ten killers the doesnt have any way to stop it. By the time we hit the middle of the century in 2050, if you dont prevent alzheimers, an estimated 13. 8 million americans will 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 the most expensive disease in america. Even if you are lucky enough to live a long life it is never touched by all timers it will impact you because you are going to pay for it. In 2016, the tab for direct costs to our society for alzheimers is 236 billion, it costs more than Heart Disease or cancer. Guess who is paying that bill . You and i are. In 2016 medicare and medicaid spent 160 billion on alzheimers care, when in every five medicare dollars. By 2050 if we dont find a treatment for it, it will be when in every three medicare dollars. I told you what the demoe family is doing at the doctors but we all have to be in the fight if we want to make a difference. What do i mean by that . In 2015 the government spent 5. 4 billion on cancer research, 1. 2 billion on Heart Disease and 3 billion on hivaids and those investments are paid off because death rates in all those diseases are declining. That senior Research Funding for alzheimers was 566 billion and the death rates are climbing. As i pointed the out earlier so are the costs. Alzheimers disease is the medical pandemic of our time, it doesnt care about your income, your politics, your education and your religion or if you are a celebrity. It is an equal opportunity killer. I do believe we as human beings are capable of coming together and defeating it and we have no other choice because whether it is your family tree or not it is going to impact you. One of the doctors i interviewed for my book was a soviet immigrant, the first person who discovered any genetic mutation that guarantees alzheimers, we know about three of them. 20 Research Teams trying to do the same thing as dimitri. There were other scientists who took credit for his discovery and he didnt care and this is what he told me. If so many people are working on a problem it will be solved. Personally, i want to see as many people working on this problem whether they are Research Scientists or universities that allow them to pursue those answers or politicians allocating funding, or a superstar like Glen Campbell who allows his private pain to be public so more people understand what is happening on ordinary mother giving up the last few years of her life to be a guinea pig for research, or a man subjecting himself to research the day he buries his brother because there is a singular goal here and that is to save the world. With that, lindsay and i welcome your questions. If youre going to ask a question please come to the microphone in the center. [applause] thank you for coming and speaking about alzheimers. Lindsay, i appreciate your being here, how is the family treating this . What do the children think . Thank you very much. I am especially interested in alzheimers. 85 to 70 from alzheimers. And the geographic area, among them all is smoking, i if you know of any research the correlate smoking in alzheimers . It is a great question. I dont know of anything specific to smoking but we do believe a lot of complicated diseases, alzheimers, as well as genetic, heart health and brain health, smoking could be a there has been a change in recent years how people define alzheimers or the extent to which they label people with Cognitive Impairment as having alzheimers. My mother is in a situation where it has been clear to us for several years she has a degree of Cognitive Impairment, but we saw the physician, it was kind of taken about. I thought of alzheimers, something qualitatively different than memory loss and Cognitive Impairment, talk about how that shifted in recent years. Are you aware of that. Your experience is a common one. People will say, several people have said to me my Family Member has dementia, a catch all explanation or term, that always describes alzheimers. There are few things like a stroke or certain other illnesses that cause dementia like symptoms, without alzheimers we are starting to understand how to detect it, and developing blood test so you would be able to less invasively and less expensively diagnose alzheimers, what happens with your mother i dont know, it is done with cognitive testing and stand out over time, if the decline was happening over a number of years it is almost always alzheimers. People dont like to call it all timers and of time people didnt like to call it cancer either. Does anyone remember the terms a big cd . This is the big a, right . How has your situation impacted your decision whether to have children . I knew that was going to come up. I do not have any children. I dont think alzheimers is the factor for that. In the back of my mind maybe there is some of that, but at this point my husband and i havent felt, to have any kids, they are not having kids, dont have any yet and i dont know if alzheimers cloud, and not ready for children, and that is a factor, because there is the chance of passing the gene. Can you hear me okay . My mom has probable alzheimers diagnosis, i was interested in the topic and i particularly like the combination of macro context with a personal story behind it. So one of my areas of study in academia was public affairs, i dont know if either of you have any guidance for average People Like Us to be more engaged in the civic or policy arena, are there things we could be doing to support local alzheimers organizations, should we be calling certain policymakers and advocating more research dollars, are there key policymakers in washington or madison or minneapolisst. Paul that we might go to to up the pressure from the grassroots to correct the imbalance in research you identified . One of the first things is getting involved in your local chapter of the Alzheimers Association, they are a Great Research of who to contact in terms of your specific legislators or government officials and other ways you can donate, volunteer, get involved. I would also say i am wonky by nature too. Any type of lobbying of your own Public Officials frequent insistent lobbying is helpful but the reason a group like the Alzheimers Association and aarp are valuable because lobby groups do know is lindsay mention who to target and they would know if there were bills in the pipeline for funding and the more support they have behind them the more influential they are and the more they have in years. Where the diseases, there is money for big eyed looking animals and money for things that embarrass people, whether it is alcoholism or Mental Health and i think there is a sense about alzheimers that people are uncomfortable dealing with. My wife and i have we see people like that. I wonder if there is a stigma even though you described an entire genetic, biological pandemic, we came to the aids pandemic with equal issue of groups acting up to fight the stigma. Can you talk about repositioning or dealing with the discomfort when one is confronted with a until decline, makes people uncomfortable and not willing . Do you want to address this first . One of the biggest things is what we are doing now, talking about it. The more you talk about it, the more you get out there and say this is alzheimers in my family, this person, the more you talk about it the stigma starts to go down and that is part of the goal of myself, my cousin, my siblings, why we want to do these things, to help decrease that stigma. The other thing is it is not just the stigma of Mental Illness but also the fear especially if for example in lindsays family these are people who are still of working age. One of lindsay upsets who passed away had longterm care insurance, that is becoming scarce to get because Insurance Companies are ahead of us and know it is expensive so it is hard to get, if you dont have it you are in a lot of trouble the younger you are when this disease comes along, people are afraid to have this diagnosis but are afraid of not being able to get insurance. The stigma goes away when we talk about it, the same with hiv, that was one point because people speak up and act up and say this isnt something that makes me less then you. This is you, this is me. I dont know who may have heard the news story a couple weeks ago, there was a pharmacist on capitol hill the fifth he has been filling alzheimers medications for members of congress and was asked to backpedal because what is the implication . If that is the case, theres something wrong, right . I would love somebody that actually has those medications to say we will put hipaa aside, i have to take that medication because that medication does not solve the disease, attempt down your symptoms, it doesnt make you better, how about funding something that is making you better . 5 years ago i sat in a Doctors Office and listened as he explained another disease called louis body dementia. I had never heard of it before that day. Since then, every time i turn around, very quietly, somebody mentioned, Robin Williams died of that. Are these parallel diseases . Is there a whole family of others in addition to alzheimers and louis body dementia that are very close together . How do we tackle these as a group, not just alzheimers alone . That is a great question. To answer the first part of your question, yes, they are all similar, they are cousins of each other. One of the doctors i interviewed for this book, we know more about outerspace than we know about the inner workings of our own brains. It is very difficult to conduct Brain Research for biological and related d funding. How do you tackle it . Spend more money 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, typically Funding Sources will go with the safest. The safest one might not be the groundbreaking one. The answer is back to funding. Thank you very much. The question is is there research that suggests our food supply make symptoms worse, and eat certain things and other things and research on that front. A lot of recommendations, lifestyle modifications and things like that, lp balanced diet, eating more of the lean mean fruits and vegetables, general nutrition recommendations we hear quite a bit, getting exercise like nikki mentioned before, heart health his brain health, anything healthy for the heart is healthy for the brain, and things like that, getting good sleep, stress reduction, those lifestyle things that are recommended to help with prevention. I dont know about specific food supply itself. The food supply i dont know too much but one specific recommendation as lindsay said with eating healthy is a cholesterollowering diet because it is believed to be a link between amyloid which is one of the abnormal proteins in alzheimers and cholesterol production. Again, these are all very much fluid fields of research. As with cancer, there are some genetic factors in cancer but there are environmental factors, same with alzheimers. Are there ways when someone does get alzheimers or any other type of dementia, i have seen even with my own parents taking care of my grandparents, it comes to be like a teacher role almost, that person wants to be independent and act like they used to but you have the challenge of having to kind of teach people things that they knew before and what is the best way you have seen to kind of make that better i guess . That is a tough thing and one of the biggest things is having patience. One of the things that is recommended is if someone is confused, or in their world, feel it is 20 years earlier, you go to them, the place where they are, and live in their reality and it is hard to have that patience. My dad is doing well, he is still working but i will call him on the phone and we talk 20, 30 minutes and in a 30 minutes we had the same four five conversations. They cycle and we say the same things and for a while it took me a while to get okay with that, not say i got it, and sit in those conversations and have them a few times because at some point the conversation wont be there. In terms of teaching them things, taking that minute to step back and have the patience to be in their world and realize even though you told them this 500 times they dont remember. That was my best experience. Lindsay has more firsthand experience because of her father but i do know it varies with anything from patient to patient. Some people become very agitated very easily, and often one of the tragedies of alzheimers is they will be that way with the people they care about the most, spouse or best friend. You have to be you have to have a thick skin to take that and remember it is the disease and not you and not them hating you. Easy to say, difficult to do. It is one of the crueler parts of the disease. My question goes with what you were just saying. Can you talk a little bit about support systems for caregivers . In my situation my sisterinlaw developed alzheimers in her early 60s. My brother retired early in order to care for her and it is 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 support . Another great resource is the Alzheimers Association. Everyone will have different resources. I know where i live there are a couple Nursing Homes that offer daytime respite surfaces, if you have errands, bring your loved one and care for them during the day and sometimes give yourself a little break. Other places may have volunteer programs or things like that, that is one of the places to check because they will know the local support system. I would echo what lindsay said about the all Farmers Association as a resource but thank you for your question because you touch on something, sort of an underappreciated side effect of this epidemic which is the toll it takes on caregivers. Lindsays grandmother had 5 of her 6 children, her husband, mother in law, brotherinlaw, sisterinlaw and several nieces and nephews affected with this disease and even though she didnt have it impacted her significantly impacted her heart health, the stress from caring for an alltime is patient in a 24hour situation like you described is astronomical. Friends who are able to put in a couple hours helping, taking that person to do something if they are able to do that, those few hours could be a godsend to the caregiver. We dont have a solution for that, you can see and in the larger city, a lot of respite care, it will not meet the need yet and if we solve the disease that needs wouldnt be there. A couple strands and reaction to previous human day. In terms of coping with a loved one with the disease, there is a report about a family, a young couple that had gone the wifes mother with her dementia, and the soninlaw apparently had a background in standup comedy, especially spontaneous improvisational comedy and found as you were saying going with the flow, using what the person living with the disease gives you in terms of memories, go with it, that is a better way of responding trying to refute that, it doesnt work. Going with it like a standup comedian or improvisational comedian. The other was there is a project based in new york city that has ties around the country, the alzheimers poetry project, a way of helping People Living with the disease and their caregivers, understand what they are dealing with and tapping in to memories through poetry, i came to a function in this very room where they did local poets read some of their pieces and the facilitator had people in the audience respond to that, some of those messages and themes, and compose a collective poem together. It is really a nice way to remind caregivers that there are memories are still alive and well and can be tapped into that can enrich the lives of the person living with the disease and give caregivers, as diminished as their cognitive capacities are, richness in their lives that can be tapped that are very rewarding. The alzheimers poetry project. Something i went to mention in response the early question about what can people do to promote research . There is a Large Research group at the university of wisconsin, doing a lot of research on alzheimers and one thing they have is a registry that includes children of people with alzheimers, children whose parents do not have any dementia, that is something we can all do, sign up for their registry and it involves various testing, a way to advance the state of knowledge in the area. There are few such registries around the country. The Alzheimers Institute in phoenix has amaral farmers prevention initiative. They have registry related to fat because these are academic centers, the problem i mentioned earlier about worrying your status would be disclosed in that situation which is important to many people. As i learn at a speaking engagement over the summer you can actually find out through a home genetic tests, whether you carry a genetic predisposition for alzheimers, not the same as lindsays family, this is a gene called a po e number 4. You have a significantly elevated risk for alzheimers, not the kind of thing your physician will test you for or would test you for because there is into treatment for it so potentially very disturbing. In a home genetic test there isnt any filter and no genetic counseling, a woman stood up at a q a to talk like this when its that i have two copies of aoe 4 and she had a genetic test and said what do i do now . The reality is we can open the pandoras box in the privacy of our own homes and our Healthcare System has not caught up with that so we better get cracking on that because the answer, disclosed that if you want to get insurance. She was only in her 30s. From the brca gene, it is the same risk so it is up there. This problem is here, it is here to stay, it is not going away. We have got to confront it. I cant emphasize that enough. Difficult election for a reason. Everyone in this room will be touched by it. My own family, my own biological family am not aware of anybody who has alzheimers. It is the most pressing issue to me anywhere. Any other questions . Okay, thanks very much for coming and spending time with us today. [applause] thank you to them and to all of you, you will be in the signing area, if you have any comments or want to get a book signed we will reconvene at 1 30
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