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tv   Niki Kapsambelis The Inheritance  CSPAN  December 9, 2017 8:01am-9:01am EST

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that is all this week and on book tv on c-span2, television for serious readers. for complete schedule visit our website, put tv .org. now we kick off weekend with the look at the study of alzheimer's disease. >> hello, thank you for coming today. my name is nikki and i wrote a book called the inheritance. it follows the family centered in north dakota, a trend that carries a very rare genetic mutation that guarantees alzheimer's disease. i'm really pleased to say that be today is lindsay's father, dean, was a central figure in my
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book and lindsay will be speaking today, as well, about some of the experiences that her family and she personally has gone through alzheimer's disease. when i think back to the first time i met members of the demo family in 2009 it really feels like i'm reviewing the notes that i took on someone else's life. we did not know each other and i didn't know about old-timers disease or how lethal it is and i was just a journalist who was on an assignment in pittsburgh and i went into their hotel room spend a couple of hours interviewing them and when i came out it was like i had gone through the looking glass and i was completely blown away by their story and what they were going through and i was never going to be the same which is why i decided to write a book about them. i learned from them quite a few
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lessons that i like to share with you today and hope that it will shed light on where we are with this epidemic and that's what it is, a public health epidemic. i think it's the public health epidemic of her time even though we don't think of it or talk but also was disease that way. several members of the family are from north dakota, as i mentioned, several are from wisconsin and there are some in colorado, oklahoma, wyoming so they are spread all over. for those who are familiar with the book the facts of their mutation are pretty sobering. people in the family who carry this mutation developed all summers in their 40s and typically they pass away sometime in their 20s and if you have the mutation you have a 50% chance of handing it off to your children and of the six
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siblings of the main focus of my book most of them were already parents at the time they learned this news in 2004. there are only a few hundred people that this mutation and as you might imagine their extremely valuable research subjects because they're guaranteed to get the disease scientists have been able to watch the biological progression of all servers in real time by scanning their brains and correlating those images against traditional cognitive tests and so for this reason and because of their willingness to be researched test subjects we are now at a point in where were understanding so that made her story a double-edged sword. it was a credibly tragic but at the same time it was extremely inspiring. one of the lessons i learned from the family is that heroes often appear in most ordinary packaging. this is a family that is middle
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america is anyone you have ever met. they are teachers and oil workers and in lindsay's case, physical therapist, an architect, a hairdresser, you know, you name it they are part of society. they don't look like superheroes but what sets them apart in my mind as they did when they were handed this extraordinarily piece of bad luck. they made a delight collective decision as a family they would fight back and to give you an idea of what they were up against what they were fighting back was a disease that has been around for as long as human beings have been around in science has known about it since 1906, so more than a century, and hasn't done a thing about it. they've not been able to solve it. it is a medical mystery.
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when they were diagnosed in 2004 they really did not know who is going to help them fight back when they made this decision because alzheimer's research is still relatively new and most of what we been able to do with this disease has occurred within the last ten or 15 years. for them it was like walking into battle against the monster you can't see and your blindfolded and are holding a stick and i don't know who will help me with this but i will fight and if i'm gonna fight or go down to die, i'm going to go down fighting. that courage resonates. even if your monster is not alzheimer's, we all have our own battles and in those moments you feel like you're back up against the wall you can relate to what the devils were up against. i think of aunt laurie, lindsay's aunt laurie, who traveled to research for every year until the point where she entered a nursing home and she 57. she was a fiercely independent funny, capable woman and when i
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met her in 2009 you would not have known that she had alzheimer's. one of the things that a lot of people don't know about old-timers is this. when a person's symptoms begin to roll and show up more prominently, travel makes them worse so you have difficulty reorienting yourself when you return home and every year that lori came to third for research it was shortening the time that she had left with her three daughters and granddaughters and husband and she knew that. she was giving up a time and she did it anyway. i asked her why and she said because this is my salvation. she did it because she wanted to save her daughters and she wanted to save my sons and she wanted to save your daughters in your sons.
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she knew that what she was doing was not going to help her because the science wasn't there yet in which he couldn't fight anymore she donated her amazing brain research for further study. i think about dean who is with his father when he was had the disease it was announced that he was going to live his life as well as he could for as long as he could and instead of telling of this tragic occurrence in his family he decided to focus on what he could control and everything he had that he was grateful for. so he takes a road trip to the sun and he danced at lindsay's wedding and he traveled to australia with his lifelong best friend and with dolphins and last year he went to toronto in the summer he went to england to address international conference for the alzheimer's association to bring attention to this disease. this past spring dean. his closest sibling who is his brother, doug, doug was 19, 19 months older than dean and on the same day after that funeral
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when he served as a pallbearer that actual same day he asked me to stay with him as a nurse injected him with an experimental drug that his older siblings were too late to get. i think about their sister, carla who did not inherit the gene and there was a time when carlo was a homecoming queen and a cheerleader and easily intimidated into a discussion itself is a ditz but all that changed when her siblings were diagnosed. she devoted the rest of her life to alzheimer's research and she's the one that steered her siblings into the studies and she was the person i reached out to the idea of a book so without her wouldn't know anything i'm telling you and science would not have been able to save the family or the disease with such great detail.
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the second lesson i learned from writing this book is that in order to succeed you fail. i met a lot of brilliant doctors in the course of this research and the funny thing about that was how unassuming they all were. they really did not care about letting you know how important they were. they didn't 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 isn't 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 their so back in preferred there was a doctor named bill and he's been working there since 1987 and he studies alzheimer's disease. much his entire career and in 1994 he decided that he would take on the holy grail and he would figure out a way to look at alzheimer's in a living brain. he spent several years
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attempting this endeavor and failing repeatedly. the only project he was working on for all those years trying and feeling and a lot of his colleagues recognize how important it was to look at all servers and living brain was quietly on the sidelines watching him they weren't able to do it themselves because it was dangerous for their careers and it would be easy to lose your job that way. but it was important and it was important because up until then the only way we can look at alzheimer's disease was on-site under a microscope under a person has already died so you don't really know too much about how the disease has been progressing biologically and is one of the reasons why we weren't able to make much progress in solving it. so doctor had a breakthrough in on valentine's day 2002 he was
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able to use a radio tracer that he developed in a living person. you get an injection and they do a scan of your brain and it lights up and the signatures of alzheimer's disease and he can look up developing 15 years before your symptoms ever occur, 20 years before they occur and it was a game changer in alzheimer's and it happened because he was willing to fail. i think also of doctor francisco who was a doctor from midian, columbia and when he was young man, early in his practice, he stumbled across another family who had the same genetic mutation as the demoe family and the family is really large and he spent years studying them and he often visited them by horseback through dangerous territory and he was kidnapped more than once and so were members of his team and they kept their patient samples cold in the river to preserve them.
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he worked in obscurity for many years trying unsuccessfully to get anyone to pay attention to what he found but once the doctor developed this radio tracer to look at alzheimer's in a living brain pharmaceutical companies began to target the underlying biology and the doctor's work became very valuable because the colombian family like the demoe family offered perfect research subjects that if you're guaranteed to get the disease you can be tested in euro find out that you're going to get it they can start looking at your brain when you're in your 20s and watch as the disease unfolds and target the disease with experimental drugs designed to prevent it. today the two families are a part of a large well, it's not large because it deals with a small publishing for each part of two different drug trials that run parallel to each other testing drugs that test and those in charge of your notes
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compare practices and they been able to bring the population in the science together. with that i would like to take a break for a minute and introduce lindsay who can explain a little bit about her personal experience this disease and what it's been like for her. lindsay's generation is actually in a unique position because now that they know, unlike their parents, that this is a mutation that is stocking the family tree the decisions for this generation are very different and i will let her speak to that. >> i want to thank you all for being here supporting this book and having interest in the story it in my family. it's very encouraging and it so important for the advancement of finding a cure for alzheimer's disease. as nikki said my father is dean demoe and he has a gene for
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early onset all timers. i have the% chance of developing alzheimer's in my 40s or 50s. i'm 31, married, and work as a physical therapist in minnesota. i also have younger brother is 28 and a younger sister who is 21 and they equally have that chance for alzheimer's disease. my brother and i have been tested as part of the research study we have chosen not to know our results at this time. most days i would say i'm perfectly content with not knowing what that status is because there is no treatment for alzheimer's disease. other days if i have trouble finding the right words or can't remember where i put my car keys i have a little bit of panic and think oh, is this alzheimer's disease? i think i see people nodding their heads and you had that thought for but most people don't start to think that way until they're in their 50s,
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60s, 70s. i've been thinking that since my 20s so there's a little bit of a difference at that. i was a sophomore in college when my dad tested positive for the gene and our entire family was really certain that he did not have the gene. he and his two older brothers had tested positive for the gene already and he and his older sister, carla, or the process of becoming their power of attorney so he did it more as a formality just to make sure that he was negative to be their best power of attorney. so it was a shock to find out that he was positive and a greater shock we found out that five of the six siblings had the gene. when we found out the results but even the thought of being 40 seemed like a lifetime away. by -- wasn't showing symptoms at
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the time and after i went through the initial shock i really didn't think very much about it. i was busy with college and i went on to grad school and during school i was working two-three part-time jobs and didn't have time to think about it and i didn't for a while. after i finished grad school i decided i was ready to address the fact that i have the gene and what i could do about it. i enrolled in the network for the observational study as soon as i finished grad school and i went to my first study that i was taking my boards and right before starting my job as a physical therapist and once i found out the results of my boards and those were positive results but i passed that was great but at this first visit it was where they drew the blood to test my genetic status.
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at that time i was not sure i wanted those results. before i left for that visit i did speak with my dad and asked him about his decision to find out and i asked him if knowing what he knows now does he regret finding out. he told me then that he did regret finding out his status because he, too, so sure that it would be negative. so after a lot of thought and consideration i absolutely do not want to know and there's still hope that it would be a negative result and i could be at peace with that. now, a few years later, my thoughts changed day today on whether i want to know and 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 that is hanging over your head like a dark cloud.
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it never really goes away so there are some days when i can go weeks without thinking about it but then there can be days when that is all you think about. you can go back and forth and i am very much planner by nature and so a lot of times the uncertainty messes with my personality a little bit. so there are a lot of things i think about when it comes to finding out my genetic status and for me the main thing was how it would affect else in my life. i feel like i'm in a place mentally where the results are positive or negative i feel like i'm there to handle it and that i would be okay. what stop me from finding out is how it will affect those around me. my husband, my siblings, my parents, my friends, finding out
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doesn't just affect me but all of them as well. my husband is incredibly supportive and he will stand by my decision whether i decide to find out or not and for my siblings i don't necessarily want my decision to affect their decision. so being the older sibling they look at me as a role model and at times follow my path and i don't want to be influencing their decision because it's a very personal decision and whether to find out if you have the gene or not and it's one that has to be done thoughtfully and independently of everyone else. when it comes to my parents my hesitation there is i'm not sure if they would be able to handle the guilt if it was a positive result. my dad has specifically said in other interviews that he doesn't want us to find out our status because he doesn't want to know.
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but, on the other hand, if were to come back negative it could save a lot of worrying and what if for myself and my family. the other thing i think about when i debate whether i want to know not is that if i do have alzheimer's disease my good years will be limited. i would want to make the most of those years. my dad age of onset is 48 years old so theoretically that would be my age of onset, as well. in the last 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'm a planner and i have to do everything this way and you pay off your bills faster so you get that debt paid down. instead i'm trying to find a balance of being financially responsible for the taking time for trips or events that normally i would've said no to because it cost too much money.
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whether or not i decide to find out my status i have decided i'm going to try to adopt more of a philosophy of living life to the fullest one trying to take time to make memories with the people i care about is that is what is important no matter what that test says. i'm very thankful for the amazing support system that i have with my family and friends and 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 seemed like a hopeless diagnosis and have risen to the challenge participating in research, countless mris, drug infusions, cognitive tests, lumbar punctures and many, many other things all to help her children very well knowing it will not help them. it was not a hard decision for me to start the research because they led the way for us all and
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because of their sacrifices there will be a cure for alzheimer's and there will always be hope for the future. thank you. [applause] >> thank you, lindsay. at this point it might be asking the question the thing i ask myself when i first started it alzheimer's is so widespread why am i just hearing about it now. alzheimer's disease was first discovered in 1906 and by the way, the person in it was discovered had the same genetic mutation as the demoe family and she was 56 years old when she died. for the next 60 years after the discovery science essentially ignored the disease and they thought it was a rare affliction and different from what we call senility in older people.
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that allowed alzheimer's to continue unchecked and there was really no research funding associated with it. in the mid- 1960s a study proved that senility is actually in most cases alzheimer's and that it's a disease impacting millions of people but still the scientific community and the public really did not give it a lot of thought because when we think of a disease as affecting mostly oral people we do pay less attention. in 1976 the california neurologist wrote an editorial for the american medical association which referred to alzheimer's is a major killer and it was this editorial they gave birth to the alzheimer's association and started building some support for research but probably the two biggest factors that led to beginning to recognize the severity of this epidemic were people were living longer and according to the social security administration a
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man can expect to live on average 83-point years old and a woman can expect to live on 866 years old and those are just averages so about one out of every 465 -year-old to live past the age of 90 and one out of ten will live past 90. we are living longer until you consider this. for any of us in this room the greatest risk factor for developing alzheimer's disease is aging. so, once you turn 65 euros of developing alzheimer's doubles every five years and if you turn 85 risk of developing alzheimer's is close to 50%. that brings me to the second factor i mentioned. the first babysitter turn 65 and every day since then 10000 more people have hit that milestone
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and there are currently 5 million americans alzheimer's and it's our nation's sixth leading cause of death and it kills more people than a breast and prostate cancer combined. it's the only disease in the top ten killers that doesn't have any rate to slow down or any way to stop it. the time we had the middle of the century in 2050 if we do not find a way to prevent alzheimer's and estimated 13.8 million americans are going to have the disease. if those statistics scare you, good. i believe hardly is we need to understand what we're up against and alzheimer's is the most expensive disease in america and even if you're lucky to live a long life that's never touch by alzheimer's it will impact you because you're going to pay for it. in 2016 the tab for direct cost.
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society for alzheimer's was about $236 billion with a b and it cost more than heart disease and cost more than cancer. so guess who is paying that bill? you and i are. in 2016 medicare and medicaid spend about $160 billion on alzheimer's care or about one in every five medicare dollars. by 2050 if we do not find a treatment for it it will be one in every three medicare dollars. so i told you what the demoe family is doing and we all have to be in the site going to make a difference in what we mean by that must work well, and track 2015 the government spent
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$5.4 billion on cancer research, one to 2 billion on heart disease, and $3 million on hiv and aids. those investments are paying off because death rates in all of those diseases are declining. that same year research funding for alzheimer's was about $566 million with an m and the death rates are climbing and as i pointed out earlier so are the costs. alzheimer's disease is the medical pandemic of our time and doesn't care about your income and it doesn't care about your politics and your education or your religion and it doesn't care if you're a celebrity. it's an equal opportunity killer. i do believe that we as human beings are capable of coming together and defeating it and we have no other choice because whether it's in your family tree or not it will impact you. one of the doctors i interviewed for my book was a soviet immigrant named dimitri is the first person who discovered any genetic mutation that guarantees alzheimer's. we know about. them. at the time there were more than 20 research teams around the world trying to do the same
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thing as dimitri. there were later other scientists who took credit for his discovery and he does not care. this is what he told me. if so many people working on the problem it will be solved. personally, i want to see as many people as possible working on this problem whether they are research scientists or universities that allow them to pursue those answers or politicians allocating the funding or it's a superstar like clint campbell who allows his pain to be public so others more people can understand what is happening or a ordinary mother giving up the last few years of life to be a guinea pig for research or a man subjects himself to experiment the research on 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.
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i would ask if you are going to ask a question please come to the microphone in the center. thank you very much. [applause] >> thank you both for coming up and speaking about this disease. lindsay, i especially appreciate your being here because one of the questions i was going to ask was how is the family treating this and what do the children think so thank you very much. i am especially interested in alzheimer's because i have five friends that range from 85-70 that have alzheimer's. one of the things that is, even though they don't all live in
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the same geographic area among the mall is smoking. picky, i was going to ask you. do you know of any research that correlates smoking in alzheimer's? >> that is a great question. thank you. i don't know of anything specific to smoking but we do believe that with a lot of compensated diseases alzheimer's has environmental factors, as well as genetic. so there is a thought that there is a link between heart health and brain health so smoking could be a factor there. in terms of specific study zoning in on smoking, i'm not aware of one but doesn't mean there isn't one. >> it seems like there has been a change in recent years in how people define alzheimer's or the extent to which they label cognitive impairment as having
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alzheimer's. my mother is in a situation where yes, it's clear to us for several years that she has a degree of cognitive impairment but we just saw for the first time her position labeled it alzheimer's and i was taken aback because i think i thought of alzheimer's as qualitatively different then simply memory loss and cognitive impairment. do you want to talk about how that has a shifted in recent years and are you aware of that? >> yes, i am. i think your experience is a very common one. people will say i've had several people say to me my family member has dementia but it is not alzheimer's. right. dementia is simply a catchall explanation or term that almost always describes alzheimer's. there are a few things like a stroke or certain other illnesses that will cause dimension like symptoms but with
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alzheimer's we are starting to understand more how to detect it in a living brain, not just for scans with things like blood tests. they are developing blood test so that you'd be able to lessen basically and less expensively diagnose alzheimer's whether that is what happened with your mother or i don't know but typically it is done through cognitive testing and an expansive time. if it's in her decline has happened over a number of years that almost all summers. people don't like to call it alzheimer's and people there was a time of people didn't like to call it cancer either. does anyone remember the term the big c, okay this is the big a. >> how has your situation impacted on your decision of whether or not to have children? >> i knew that one would come up. i do not have children. and really i don't think that alzheimer's is a factor for
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that. in the back of my mind maybe there is some of that but at this point in my life, my husband and i, have not felt that need yet to have any kids and we haven't said we are not having kids but we just don't have any yet. i don't know if that alzheimer's cloud if that subconsciously makes me feel like i'm not ready for children but i don't feel like alzheimer's has affected my decision. i know for some people that is a factor because there is that chance of passing the gene. >> hello. can you hear me okay?
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my mom has a probable alzheimer's diagnosis and i was interested in the topic and i particularly like the combination of the macro context but with a very personal story behind it. one of my areas of study in academia was a public affairs so i'm wonky by nature. i'm not sure if any of you have guidance for average people like us to be more engaged in the civic or policy arena and are the things that we can be doing to support our local alzheimer's organization and should we be calling certain policymakers and advocating for more research dollars and are there key policymakers in washington or in madison or in minneapolis, st. paul that we might go to to
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try to up the pressure from the grassroots to correct some of this imbalance in the research that you have identified? >> i would say probably one of the first things would be getting involved with your local chapter of the alzheimer's association. they are essential a great research of to contact in terms of your specific legislators and government officials in other ways you can donate volunteer and just get involved. >> i would also say i'm wonky by nature to and i would say that any type of lobbying of your own public officials frequent, insistent lobbying is helpful but the reason aarp and alzheimer's research foundation is valuable because lobby groups to no, apple dimension, to specifically target and they would know if there are bills in
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the pipeline for funding and the more support they have to find them the more influential they are and the more they have people here untrained ears. >> [inaudible] there is 24 big animals and less money for things that embarrass people whether it was alcoholism or mental health and i think there is a sense about alzheimer's that people are uncomfortable dealing with it. my wife and i see people like that and i wonder if there's a stigma even though you described an entire genetic, biological pandemic whether we came to the aids adamic with equal issue of groups acting up to fight the stigma and can you talk a little bit about repositioning or dealing with the discomfort when
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one is confronted with the mental decline that makes people uncomfortable and not willing to fight. >> do you want to address this first? >> sure. i think one of the biggest things is what we are doing right now. talking about it. i think the more you talk about it in the more you get out there and say yeah, this is alzheimer's and this is my family and this person in my family has it that stigma starts to go down. that is part of my goal and my siblings and and why we want to do these things is decreased that stigma. the. >> the other thing i like to mention is that it's not just the stigma of mental illness but it's also the fear especially if for example in the family these are people who are still of working age. one of lindsay's aunts who passed away did have long-term
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care insurance and that's becoming scarcer to get because insurance companies are ahead of this on this one and know that it is expensive and so it's harder to get. if you don't have it you are really in a lot of trouble the younger you are when this disease comes long. people are afraid to say they have this diagnosis because they're afraid of not been able to get insurance. the stigma goes away when we talk about it. it's the same with hiv that was an excellent point. people speak up in the act up and they say this isn't something that makes me less than you. this is you and this is me and i don't know who may have heard the story a couple weeks ago there's pharmacist on capitol hill has been saying he's been filling all summers medication for members of congress and he was asked to backpedal because what the station there? if that is the case in there something wrong well, you know what i'd love is for someone who
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has the medication to say we will put hip aside and i'm someone has to take medication because that medication does not solve the disease. it tamped down your symptoms and it doesn't make you better. how about running into something that is making you better? yes, sir. >> five years ago i sat in a doctors office and listened as they explained another disease called louis body dementia. i had never heard of it before that day and since then every time i turn around very quietly somebody is mentioned, i think robin williams died of that. are these parallel diseases and is there a family of others out there in addition to alzheimer's and lewy body dementia that are very close together? how do we tackle these as a group, not just alzheimer's alone?
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>> 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 that i interviewed for this book had an interesting take on this and he said we know more about outerspace than we know about the inner workings of her own brains. it's very, very difficult to conduct brain research for a number of reasons some biological and some related to funding. how do we tackle it? to spend more money on the funding. scientists are like anyone else and they cannot work for free. for every great idea out there, every 30 great ideas out there one might have funding in typically funding sources will go with the safest the safest one might not be the groundbreaking one so the answer really does come back to funding and it's what drives research.
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>> question i have is there research that suggests all about our food supply have makes this worse, causes it and do they stress eat certain things as opposed to other things because certain foods might make it worse and i was just curious if there was research on that fro front? >> there are a lot of recommendations about lifestyle modifications and things like that and eating a healthy balanced diet, and i don't know in terms of its supply but eating more of the lean meats, fruits and vegetables, those kind of general nutritional recommendations that we hear quite a bit and getting exercise and like nikki mentioned for heart health is brain health so anything that's healthy for your heart is healthy for the brain. doing cognitive challenges, crossword puzzles, things like
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that and getting good sleep and stress reduction there's those lifestyle things that are recommended to help with pension. yeah, i don't necessarily know about specific food supply itself. >> the food supply i likewise don't know too much but i do know that one specific recommendation as of the said with eating healthy is a cholesterol-lowering diet because there is believed to be a link between amyloid which is one of the abnormal proteins in all summers and cholesterol production. again, these are all very much fluid fields of research. as with cancer, for example, there is genetic factors in cancer but their environmental factors as well. same thing with all summers.
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>> are there ways that someone does get alzheimer's or any other type of dementia i have seen even with my own parents taking care of my grandparents it comes to be a teacher role almost and that person wants to be independent and act like they used to do but then you have the challenge of having to teach people things that they knew before and what is the best way that you have seen to kind of make that better, i guess? >> that is a tough thing. i think one of the biggest things is having patience. you know, one of the things that is recommended is someone is confused or in their world or they feel like it's years
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earlier you go to them and you go to the place where they are at and you live in their reality and it's hard sometimes have that patience. you know, my dad is still doing very well and he is still working but i will call him on the phone and we talk 20 or 30 minutes and within that 30 minutes we have the same four or five conversations. they cycle and we say the same thing and for a while it took me a while to get okay with that and not just be like okay, dad, i got to go to sit in those conversations and have them a few different times because at some point that conversation will not be there. in terms of reteaching them things and taking a minute to step back and have that patience to be in their world and realized that even though you've told them this 500 types they do not remember which is probably my best experience.
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>> lindsay has more first-hand experience because of her father but i do know that it varies as anything from patient to patient some people become. agitated easily and often one of the tragedies of all summers is they will often be that way people they care about the most, the spouse of the best friend and you have to be in you have to have a thick skin to take that and remember that it's the disease and not you. and not them hating you. it is easy to say, difficult to do. it's one of the cooler parts of the disease. >> my question goes along with what you were just saying. could you talk a little bit, maybe both of you, about support systems for caregivers because
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in my situation and my sister-in-law developed alzheimer's in her early 60s and my brother retired early in order to care for her and it's a 24 hour a day job and in terms of supporting him when we live in different states do you have advice or suggestions of who to contact to provide that sort of support? >> again, i think, another great resource for that would be the alzheimer's association. every area is going to have a slightly different resources so i know where i live there are a couple of nursing homes in town that offered the time respite services so if you have errands you need to run or permits you
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need to go to you can bring your loved ones there and they care for them during the day and you can get yourself that little break. other places may have volunteer programs or something like that so i think that's one of the first places to check because they will know the local support system. >> i would echo what lindsay said about the alzheimer's association as a resource but thank you for your question because i thank you touch on something that is sort of an underappreciated side effect of this epidemic which is the toll it takes on caregivers. lindsay's grandma, gail, had five of her six children, her husband, her mother-in-law, her brother-in-law, sister-in-law and several of her nieces and nephews infected with this
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disease. even though she didn't personally have it it absolutely impacted her. i think significantly. it impacted her heart health, the stress from caring for and all summers patient especially in a 24 hour situation like you describe is astronomical. friends who are able to even just put in a couple of hours helping taking that person to do something if they're still able to do that those few hours could be a godsend to the person that is the caregiver. we don't have a full solution for that as a society yet and you will see into some larger cities a lot more respite care and nursing homes that are set up for memory care but i don't think that it will meet the need yet and i hope that if we solve the disease that need not be
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there. >> just a couple of strands in reaction to the q&a in terms of coping with a loved one with the disease there's an npr report about a family of the young couple who had gone to help the wife mother with her dementia and the son-in-law apparently had a background in stand up and especially in spontaneous and improvisational comedy and we found that as you were saying, lindsay, going with the flow and
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using but the person living with the disease gives you in terms of memories and petition and go with it and that is a much better way of responding and i find myself my mom trying to refute some of the fantasies and it just doesn't work so going with it like a standup comedian or improvisational comedian and the other was there was a project based in new york city that has ties around the country called the alzheimer's poetry project and it's a way of helping people living with the disease as well as their caregivers understand what they are dealing with and tapping into deep-rooted memories poetry and i know music can serve the same function but 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
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audience respond to that into some of those messages and it seems and compose a collective tone together. it's a nice way to remind caregivers and memories that are still alive and well that can be tapped into and enrich those who live with the disease and give caregivers as diminished as these people's cognitive is there are memories and so can be tapped into and found very rewarding. it's the alzheimer's poetry. >> thinking. >> one thing i also wanted to mention response to your early questions about what people can
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do to promote research there is actually a large research group at the university of wisconsin in the department on aging or institute of aging that is doing research on alzheimer's and one of the things i know they have is a registry that includes both children of people with alzheimer's as well as children whose parents do not have any dementia and you know, i think that is something we can all do is sign up for the registry and i think it involves various testing but it's a way to advance the state of knowledge in the area. >> that is a great point and there are few such registries across the country and i know the banner center in phoenix has a registry related to that and because these i believe these are academic centers the problem i mentioned earlier about
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worrying that your status would be disclosed would be protected in that situation which is important to many people but you can as i learned you can learn at a speaking engagement over the summer you can find out through a home genetic test whether you carry a genetic predisposition for alzheimer's and this is the same as what lindsay's family has this is a gene called apo e4 and if you have two copies of it from one feature families you have a significant elegant elevated risk and this isn't something your family physician would test you for because it's potentially disturbing and legal knowledge. at a home genetic test there isn't any filter there and there's no genetic counseling so
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woman stood up in a q&a in a talk like this one is that i have two copies of apo e4 and she had her home genetic test and she said but when you now? so, the reality is so we can now open that pandora's box in the privacy of our own homes and our healthcare system is not cut up that yet. we had better get cracking on that because the answer is you may have to disclose that if you're going to try to get insurance and do you want to know. she was only in her 30s. her risk is about as elevated as if you have the brca gene for breast cancer. about the same risk so it is up there.
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the problem is here and it is here to stay. it is not going away. we have to confront it. i can't emphasize that enough. it's a call to action for a reason because everyone in this room will be touched by it. in my own biological family not aware of anyone who has all summers in it the most pressing issue to me anywhere. any other questions? okay. thank you so much for coming in for spending the time with us today. [applause] >> thank you to them and thank you to all of you. nikki and lucy will be out in the signing area you have any other comments or if you want to get the book signed and we will reconvene at 1:30. you so much.
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>> sunday at 7:00 p.m. eastern on book tv on c-span2 former senior advisor to secretary of state, rex tillerson, discusses the book the general world war. >> content is king, this tradition is queen and she wears the pants in the family. if you think about that the way i like to think about isis and others is that were in a constant war. >> at 8:00 p.m. former msn see news anchor everything you need to know about social media without having to call a kid. >> in social media everyone can get together and join together and do incredible things. there are stories in the book about what others have done with social media and social media is not really new. all that's new is the delivery
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platform. think about it. we had smoke signals and that social media if everyone could see the smoke signals and the party line in the telephone line and that the social media and everyone on the block get on the phone. what is so different is that everything is amplified and in terms of how far you reach and of course the speed of the communication. >> for the full schedule go to >> here's a look at some of the best books of the year according to library journal.
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>> can you talk to us about what was hard about writing this? >> everything. oh you want me to elaborate. [laughter] it was a difficult book to write. i sold this book just before that feminist came out and i was thinking about what i wanted to my next nonfiction project to be and i thought the book i want to write least is a book about fatness and then i realized it's the book i should probably write the most and my dad always tells me to do something no one else is doing if you want to achieve success. a lot of people write about fatness from the perspective of having already.
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out their bodies and have lost a lot of weight and so you see a woman on the color of her book standing in half of her formally that pants and she's like, i did it. i just thought i can't write that book yet and i want to write that book so why don't i tell the story of my body today without apology and just an explanation about this is my fat body and this is what it's like to be in this world in this body. >> some of these authors have appeared on book tv. you can watch them on a website, c-span where history unfolds daily. in 1979 c-span was created as a public service by america's cable television companies. it is brought to you today by your table or satellite provider. ...


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