The Impact of Alzheimer’s

Hear three families share their stories about this devastating disease.

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TEDMED Challenge: Preparing for the Dementia Tsunami

Guy Eakin, Ph.D., BrightFocus Foundation's Vice President of Scientific Affairs, participates in an informal, moderated discussion with thought leaders from various backgrounds who shared their views and responded to questions on Preparing for the Dementia Tsunami.

Transcript:

Judy Bachrach (Moderator): Welcome to TEDMED’s live events! Focusing on the great challenge of preparing for the dimension tsunami. I'm Judy Bachrach; I'll be moderating today's discussion which will run about an hour. The session is part of the great challenges program sponsored by the Robert Wood Johnson Foundation. The goal of the great challenges program is to look at 20 of the most complex problems in health and medicine: issues that can't be solved with the magic bullet or policy.

Our mission is not to solve these issues, but to share ideas from many disciplines to reach a better understanding of them than we had before. We’ll be taking questions from viewers on Google hangout and on Facebook and on Twitter. That's Twitter @TEDMED just tag your questions with hashtag great challenges and we'll try to get to them as mentioned, my name is Judy Bachrach, I’m contributing editor at Vanity Fair. I have a mother who has Alzheimer's. So I know the disease only too well and Tedmed has asked me to moderate today's events. Today we're delighted to welcome a great team of experts that we call our challenge team to lead the discussion on this topic. Our first guest is Dr. Sharon Brangman. Dr. Brangman is a board certified in internal medicine and geriatric medicine. We also have Dr. Guy Eakin the Vice President of scientific affairs at the Brightfocus foundation. Guy leads the foundation's efforts to identify promising and innovative research to combat Alzheimer's macular degeneration and glaucoma. We also have Dr. Sam Fazio: he's director of special projects at the Alzheimer's Association. Dr. Fazio has worked for the Alzheimer’s Association since 1994 and he currently works in constituent services where he oversees quality care standards and social and behavioral research initiatives. And finally, but not least we have George Brandenburg. George is the chairman and co-founder of the US against Alzheimer’s network and US against Alzheimer's, a nonprofit education and Advocacy Network and campaign. They are committed to educating and mobilizing America to stop Alzheimer's by 2020. Welcome everyone. And just so everybody knows 2020 is an important year because by that time we understand, they'll be more than 43 million Americans over the age of 65 and 15 million over the age of 85. That's huge. That is twice the figures that we had in 1985 of older Americans. At this time, one in eight older Americans has Alzheimer's and that's according to the Alzheimer's Association. So we're going to have as this series is called a “tsunami” of dementia. I think you all know that people are getting older and older, not only in the United States, but all over the world. So Dr. Brangman let's start with you. What are we going to do to make that dementia tsunami a non-issue or at least less of an issue than it appears to be right now.

Dr. Brangman: Well, one of the most important factors, I think, is training all healthcare professionals, that includes doctors, nurses, therapists, pharmacists everyone needs to be aware of the issues of our aging population, and more specifically, they need to have the skills to manage people with cognitive impairment. We know that the fastest growing segment of our population are those people who are 85 and older. And that's where the biggest risk for Alzheimer's disease is.

Judy: That may be, but of course I'm sure a lot of people out there listening now or worrying about their loved ones as well as themselves and their friends and they're thinking, “Oh, gee, what a choice. Either get to die before 85 or I get dementia of some sort of perhaps Alzheimer's.” So I'm going to ask you Dr. Fazio are there initiatives right now medical and that might give these people hope and encouragement?

Dr. Fazio: Well, yeah, I think there's a lot out there right now that's looking to give people hope; there's all different types of research going on things around biomarkers and early detection and different treatments. I think a lot more research is needed. And I think that's what's so important Alzheimer's has been under funded in the past and we really need to really look at the epidemic of this disease and put more federal funding towards it. So we can really hit the research hard and really help these families who are going to be in need.

Judy: I'm going to go to Dr. Eakin right now and ask him, or what specifically are the advances that are being made that could give people hope?

Dr. Eakin: Sure. Well, before we get to that, let me just say the scale of the problem. The doctor Brangman mentioned is huge. Right now we have less than 1% of our nurses are physician’s assistants and our pharmacists are certified in geriatrics but 26% of their patient visits are from geriatric populations. I mean that that's a huge discrepancy so training programs are immensely necessary. When you're asking about the research advances, Dr. Fazio very appropriately alluded to the biomarker projects that are going on the Alzheimer's Association has been great with some near imaging work there's also a lot of basic science that's occurred just in the last year, we've seen seeing for the first time how Alzheimer's disease might be spreading within the brain from cell to cell, there have been ways revealed of how Alzheimer's disease proteins may be cleared from the brain, but all of this is at is impeded by a very true lack of funding that we have for this disease. Alzheimer's disease as many of the people on this panel know, it's the, I think, as you mentioned, it's one of the top 10 killers of citizens of the United States, and its the only one without a disease modifying treatment and it gets about a quarter to a half of the funding of the other of the other diseases on that top 10 list. But certainly, certainly the biomarkers the early detection, are some of the research advances that are going on we're particularly interested in the opportunities to repurpose drugs, the existing FDA approved drugs to see if they might be used for an Alzheimer’s indication.

Judy: I guess I'm going to follow that up with a request in which is I think the biomarkers, if I'm not mistaken, simply tell you that whether the disease is possibly likely to occur. I don't think it gives anybody hope of a cure and I think the protein inhibitors have not been proven successful if I'm not mistaken, am I correct there?

Dr. Eakin: You're, you're correct. But you know, I think we have to think a little bit further outside of ourselves when we're talking about these biomarkers it whether or not they're giving us a hope for a cure at an individual level they give us the opportunity for some things maybe they give us the opportunity for advanced planning how we want our how we wonder appears to be handled, you're correct. We don't have a disease modifying treatments right now, but we aren't going to have a disease modifying treatments unless we have these biomarkers and an ability to detect this disease earlier and earlier in the in the in the natural development of the disease. What we saw from these clinical trials that you referenced this last year, is that if there's any signal for hope it's catching the diseased early and if biomarkers and various diagnostics that they're available, they're going to be the only way of catching diseases early.

Judy: Thank you. Dr. Vradenburg since we're talking about money and I'm sure you're concerned about money when you were talking about dementia, as well as Alzheimer's. What are we talking about when we're talking about huge cuts in Alzheimer's and dementia funding what are we talking about what are the numbers?

Dr. Vradenburg: Well, today we spend about $6 billion a year on cancer research about $3 billion and HIV AIDS research and less than$ 500 million a year on Alzheimer's research. If the sequester goes into effect next week or 10 days then the NIH funding for new grants is going to drop precipitously and that includes for Alzheimer's, as well as other diseases. As a consequence, new granting will be significantly down multi year grants will play out. But the new grants will play down so that is a big and significant problem, let me talk about money in another sense: the cost of caring for those with Alzheimer's today is over $200 billion a year and estimated to rise to over 1 trillion a year coming decades. So the cost problem here is an enormous one for the country. And if you thought that we were investing a half a billion dollars a year against a problem that was costing the American people and the American taxpayers $200 billion a year, you'd say something was wrong with that picture and something is wrong with that picture, this is not just a human health problem. It's a problem of our fiscal sustainability and the economic costs on society of having so many families having to pull out of the workforce to take care of a loved one who has Alzheimer's or dementia.

Judy: Did I correctly just 500 million on Alzheimer’s and dementia overall?

Dr. Vradenburg: At the NIH, yes.

Judy: At the NIH. Ok. Considering that more and more people are getting older and older in the United States. How come there hasn't been a massive revolution. If you will have people who are getting older and who are concerned about the future as well as concerned about the future of people who might care for them: their children, their grandchildren.

Dr. Vradenburg: I think there’s growing awareness now as baby boomers are turning 65 and 3 to 10,000 a day and it will be for the next 17 or 18 years. So I think the problem is growing as the baby boomers are seeing this happen with their parents and wondering I do not want to do have my children do for me. What I'm having to do for my parents today. So I think baby boomers have shifted attitudes, historically, and a wide variety of ways. And I think that they will have a marked impact as baby boomers continue to turn 65 of part of the problem here is the victim of Alzheimer's really can't speak for themselves. They really have lost the ability to communicate, there's a great deal of social isolation and the caregiver is so exhausted and probably suffering a degree of depression cells for what they're having to do and the time suck that goes on trying to take care of a loved one, the caregiver does not have much of a voice either. And so it is up to us the rest of us who out there, advocating for those with the disease of those who are taking care of them to be the voice of those who really cannot speak for themselves.

Judy: Thank you. I think you were going to tell us something.

Dr. Brangman: Yes, I was just going to kind of add on to what George was saying is that I think as a culture in a society. We're very youth oriented. Everything is focused on staying young and doing superficial things to look younger. And we have not taken seriously the issues of aging and because we are we have this fear and this denial about aging, We have overlooked, Some of the major issues that can affect your quality of life as you get older. The other thing that I was just going to point out is that we do not have a cure right now we don't have any drugs that modified the disease. However, there are things that we can do that will possibly push back that time before we get dementia, and we have increasing information that suggests that being physically active doing weights, doing exercise in a really deliberate manner can help to reduce those risks and again as a society that's something that we don't really want to do. We all look for that closest parking spot near the mall and don't do very much to kind of keep ourselves physically active and we know that that has a big impact on brain health.

Judy: Now, that's interesting. Does anybody else know any other things we might do to stave off the day we have Alzheimer's or dementia anything any other possibilities. Besides exercise weights regular activity?

Dr. Vradenburg: There’s no question that the all the risk factors for cardiovascular disease, diabetes seem to relate to increased incidence of Alzheimer's and so there's some relationship going on in the body between what's happening in the metabolic system or their diabetes what's happening in our cardiovascular system it's like being healthy. More generally, obviously gives you greater resistance to virtually any disease. There's nothing that stop Alzheimer’s, it doesn't stop the disease. It just gives your body is slightly greater capacity potentially to resist for a period of time. So I think there's nothing that will substitute for an innovative treatment for this disease. There was a concern in the 50s and 60s that the number of polio victims in this country was going to cause the creation of iron lung hospitals in an enormous iron lung manufacturing and leg brace industry and the reason we don't have Polio health care costs today is not because we've been very, very good at efficiently manufacturing iron lungs, but because we had innovated a treatment for that disease. So there's nothing that is going to be more effective and putting off this disease than modifying drugs which will defer the onset of symptoms or slow them down and eventually a second and third generation drug that will actually stop the disease. And as Guy mentioned one of the more promising things with all the diagnostic capability. We've developed in the ability to tell whether or not the your risk for this disease 10, 20 and 30 years before the symptoms appear is that we now have major prevention trials that are going to be launched by the end of this year or early next year into interventions that occur in patients who have no symptoms and in the hope and expectation that we're going to be able to identify the treatment will cause the disease to be deferred or delay or slow down in a way that will extend quality of life and hopefully prevent the onset of disability or the onset of dementing symptoms, even though you may have the disease. If you don't have the symptoms, you still have your cognition and still have your functionality to some extent you could manage this disease, if we can find a treatment that will defer, or extend the length of time of the disease.

Judy: Dr. Eakin if I can ask you a question. And it came from Twitter: what we learn from other countries about how to handle the issue of dementia, Alzheimer's?

Dr. Eakin: You know my expertise is certainly in the in the research area, not necessarily in the care different countries do have very unique circumstances. I point to China for instance where the decades of the one child policies have skewed their demographics, so that they face a very enormous concern for for Alzheimer’s disease. If you don't mind, I'd like to actually address something that follow up on something George was saying about these prevention trials. These prevention trials don't happen by magic they require a lot to get them going. One of those things is people, and we just do not have enough clinical volunteers for clinical trials right now so prevention trials, you know, right now, the trials that are being tested that we heard on the news last fall, they involve 2000 patients the trials that are being talked about for some of the prevention trials or 30,000 patients, enrolling these people is going to be very, very tough and so we need to find new ways of getting people engaged and research contributing their own personal data and research and I our organization, along with George’s is very proud to be part of the 21st century brain trust

Judy: Can I stop you there a second? Why haven’t people come forward or their relatives or their friends. Bring them forth. Why is there such a dearth of volunteers?

Dr. Brangman: I was just going to say that the caregiving processes so consuming and I see families all the time that are just completely consumed with taking care of their loved one. If they do get a moment free. The last thing they want to do is go and spend more time dealing with Alzheimer's disease and then after they're done. They're exhausted. There are few people that might have enough energy to start in another direction to help make some change, but most people are emotionally and financially and sometimes even physically spent. You may have seen some of the research that shows that the caregivers and patients with Alzheimer's disease have the highest rate of depression and often neglect their own health. So it's almost too much to ask them to do yet something else, something more when they're taking care of a loved one.

Judy: Well, Dr Bragman while I have you on. I'm going to ask you if you can respond to this very interesting question from Twitter once again is: “what can we learn from other countries respond to the issue?” What is France doing what is Japan doing?

Dr. Brangman: I really think the United States is the leader here. I think that we see demographic shifts in the whole world where there are fewer younger people and increasing older people, and I don't really think there's any one country or system that's doing it any better because I think we're all dealing with the same issues we have limited resources and large numbers.

Judy: Sam. Perhaps you have a thought on this too?

Dr. Fazio: Yes, but I’d like get a couple things just a bit back to the clinical studies I think another big issue is that that some people aren't even aware that they exist and they're out there and you know the Alzheimer's Association has something called trial match that tries to connect people with trials in their area. And so I think a lot of it is about education about trials and about the importance of them and that they're available in their communities. So just touch on that but then also on your question about care and other parts of the countries. I think there are exciting things going on all over the world and you know there are many countries that have national Alzheimer's plans and now we're in the process of really formalizing our Alzheimer's plan that really has put more focus on spending and research money on care. And so I think that's important that we're sort of joining that bandwagon with the other countries. I think also some other countries really pay more significant attention to the person with the disease and Person Centered Care, you know that whole concept of Person Centered Care began in the UK, which really focuses on the individual's personal needs and relationships associated with that care. And so we've learned a lot from other countries about what good care looks like and how to help put out guidelines for others about what that is.

Judy: You mentioned Britain any other country?

Dr. Fazio: You know there's a bunch of other countries. I mean, Australia, you know, other countries in Europe. So a lot of a lot of folks are really, really looking at care a little bit differently than we look into the US where it's really more person centered and more holistic.

Dr. Vradenburg: If I could just comment, this country is does not have a coherent long term care plan. We have pieces of Medicaid. The deal with pieces of Medicare the deal with it you know pieces of the older Americans, I have to deal with it. But there's nothing sort of comprehensive like other countries have with respect to long care plans. I recently been appointed to the Commission on Long Term Care simply to figure out whether or not this country can develop a long term care plan that in fact is understandable to people where people can have a variety of choices, which is centered in home care. So in fact, we keep people at home as long as possible that we in fact support the heck out of family caregivers in terms of training in terms of assistive technologies and assistive services so that they are regularly relieved, as well as well-trained and understand the behaviors that they're having to deal with and the conditions that they're having to cope with. So I think that whole issue of long term care is something that we're going to have to tend to as a country as other countries are beginning to do because as Sharon mentioned, this is happening locally, it's, you know, we think of the United States we’re United States centric but there are 5 million or so victims of Alzheimer's and dementia in this country is there 35 million or maybe 38 million globally. There are 150 or 100 million caregivers globally, the impact on the global economy is now 1% of global GDP and the estimates are they're going to have over 100 million dementia victims in the coming decades and several hundred million caregivers, we do not have a globe that is used to coping with older and aging populations. We have a globe to finally cope with how to handle most of the problems of the young although they're still clearly major elements of having to get at that globally, but we have not even focused yet as the World Health Organization or others on you know the care burdens and the disease burdens associated with aging.

Judy: Well, that brings me to another question from another one of our viewers online, Dr. Leslie Curtis who asked “how many billions of dollars, do we spend on dementia caregiver’s education and support or maybe in this case, how many dollars since doesn't seem we're spending billions?” Do you know, George?

Dr. Vradenburg: Well, so, so the overall costs of taking care either a family costs or taxpayer costs is roughly 200 billion or somewhat a greater than that today in terms of the actual amount of money spent on which was earlier mentioned as the cost of educating and making dementia friendly and dimension capable our healthcare system or how to actually educate family caregivers into what they can expect and how to get access to services and how to get access to assistive technologies: we spend the trivial amount we do not yet have a dementia capable dementia friendly society or healthcare workforce, let alone the families that have to cope with this who are in comfort in experiencing sort of novel developments every day. And yet there are hundreds of people and thousands of people are experiencing the same thing, but we have not yet been able to do not have a educates family caregivers into what to expect, how to cope where they can get additional resources and how they can get assistive technologies to potentially monitor the person in their home with either dementia or some other disabling characteristics.

Dr. Brangman: I was just going to add that healthcare workforce issues can be under emphasized, we now have physicians and doctors that can graduate from professional training having very little if any specific skills and taking care of older adults or Alzheimer's disease and a lot of the ways that they are managed are, old out of date and do not benefit the patient. We have about, for example, for example, when an older person gets admitted to the hospital and gets agitated. They're often sedated and given medications that don't help the aging brains do well or, for instance, and they have problems sleeping in the hospital, they may be given medicines that actually make the aging brain with dementia more confused or likely to fall we have an archaic nursing home system that really based on hospital model with care that is often delivered by others who haven't had specific training and Alzheimer's disease which is really odd when most people in a nursing home do have Alzheimer's disease. So we need to completely retrain and look at the healthcare workforce. We currently have about 7000 certified health professionals, physicians, nurses in this country with geriatric training and we need about 16,000 right now and increasing that doubling that in the next coming decades and we don't have that pipeline for that training.

Dr. Vradenburg: The tragedy here is that, in fact, if we actually improve workforce and improve the quality of care given either at home or in some community setting that we will reduce the cost of care because we're over medicating the psychotropic drugs, were over treating we have rehab hospital readmissions and us Medicare transitions through skilled nursing facilities and rehab facilities that are excessive because we do not have an adequately trained workforce or family caregiver system to prevent those kinds of over utilization of the system or of drugs today. So there is it seems to me a line that says we can improve the quality of our dementia workforce and improve the quality of care and all care settings and at the same time over time mitigate the rising cost of due to over utilization of either drugs or the healthcare system.

Judy: Dr. Brangman I have a question for you again. And that is there 2 fairly popular drugs on the market right now for those who have Alzheimer’s, more severe dementia and one is Aricept, and one is I believe it's called Namenda (memantine). And I was wondering about your opinion of these drugs do they slow the progression of Alzheimer's or don’t they?

Dr. Brangman: Well they have very individual responses, we don't know who they're going to help ahead of time so we do offer those to most people. Aricept is in the class called Cholinesterase inhibitors that include other medicines, such as Rivastigmine and Galantamine, and that should be something that started in mild and certainly moderate Alzheimer's disease and then we add Namenda in when somebody has reached the moderate stages and they do not reverse anything that's already been lost. They certainly did not cure. But the goal is, is they do help to stabilize somebody who hopefully is at an optimal level of function. So we can kind of postpone that need for heavy duty care but inevitably this drug or any drugs people do get worse over time.

Judy: Dr. Fazio, we have another question from somebody on Twitter and that is “in your opinion as director of special projects with the Alzheimer's Association. How should health care facilities be designed for those with Alzheimer's those with dementia?” What should they look like which they feel like what do they smell like?

Dr. Fazio: That's a difficult question in a big question, you know, we actually have resources for people. We have dementia care practice recommendations, the Alzheimer's Association. That really helps people think about those types of things. I mean, like I said earlier, I think, you know, the fundamental components of good care are that it's person centered and its relationship based. And so I think, you know, not that it's that simplified, but I mean it's really places that really look at the person first and structure programs and environments that really meet those individual needs wherever they are in the disease, whatever types of symptoms or behaviors they might be experiencing and then it's all based on  maintaining a relationship with that person that the care providers know something about the people who they are, who they've been and how to connect with them you know it's so much about the environment that the person’s in that could really make the disease experience quite different than non- supportive environment.

Judy: I guess I'm going to ask you a question that I know only too well from my personal experience, which is in these health care facilities, a number of Alzheimer's patients get violent towards those who work there; they feel threatened since their brain capacity has altered and their brain function has altered and they lash out. What can, how do you train people to deal with these issues?

Dr. Fazio: Really, trying to help people understand that the majority of the time it's our reaction to the person with disease that's causing them to act that way. And so really is taking a step back and thinking about how do we approach that behavior and how did we maybe lead to that reaction. You know, sometimes it's stuff that's going on within people but other times, and most of the time. It really is how that situation was handled that could make it a more catastrophic situation.

Dr. Vradenburg: I'm gonna second Sam's comment here, I recently visited a facility in Southern California run by Silverado where they really train the heck out of their staff and were you when you walk in the place feels like a large residence, their dogs or cats are there lots of small dining rooms. So the entire families can come and spend time with the person with Alzheimer's or dementia. It's a dementia only facility and when you do see strange behaviors. The staff will go up and sort of envelop, hug; driven by culture of the proposition that love is more powerful than fear. If you fear the behavior that strange in front of you, you will elicit greater anxiety and the same sense evoke sometimes reactions from the person with dementia that are totally unintended and not necessarily driven by the disease, but by driven by the environment. But I will tell you that when I asked why what's the barrier to the scaling of this kind of level of care. The answer was management and training, the ability to develop through practices your training practices, people who have the attitude that if I love this person and don't fear them, then I can overcome these kinds of otherwise seemingly bizarre or violent behaviors that particular home was cut down psychotropic drug use by 50%. People who come in violent, strapped down turn out to be over a period of just a few days or weeks, much more peaceful because of the environment in which they find themselves. So Sam is that the you know the nail right on the head with his comment on this. I think he's exactly right.

Judy: Dr. Eakin had something he’d wish to say and then I'll get to you Dr. Brandenburg.

(Dr. Eakin speaks, but is muted on the conference call)

Judy: Dr. Eakin? You're muted Dr. Eakin. I think we'll go first to Dr. Brangman who's not muted, and then we'll go to doctor Eakin.

Dr. Brangman: So what I was going to say is that even if we look in the hospital setting giving someone uninterrupted sleep at night, which seems like an oxymoron in the hospital, but if you have somebody coming in every few minutes to poke you take your blood pressure do other things that can make someone who's cognitively impaired get very agitated. So if we look at simple procedures that we do in the hospital, we can make a big difference. Reduce agitation, reduce the use of psychotropic drugs, but it really requires a global kind of cultural sip.

Judy: Okay, now we're going to go to Guy Eakin, who I hope is back on its back on. I don't think he is muted. I am so sorry.

Dr. Fazio: Judy can I add something really quick. This is Sam. I just wanted to go back to your question that came about design and just I know I talked touched on a little bit, George talk touched on it a little bit, but I think you know a lot of places will spend a lot of money on the physical design of their environment to try to make it look a certain way, none of that means anything if it doesn't feel a certain way, you know, so less concentrating on the physical design and more really on the feel of home and how we could really concentrate on making these places to feel more like home, rather than just look like home.

Judy: Well, just a question and in this is just me speaking as a layperson. Isn't it a fact that you know if you walk into a healthcare facility and your brain isn't someway impaired in your thinking is impaired something that looks like home might be extremely important to the individual more important, perhaps than anything else. I'm just suggesting that?

Dr. Fazio: Definitely something that looks like home. So I guess I'm saying that something that looks like home and feels like home is ideal, but if it just looks like home and doesn't feel like home. Then the relationships, aren't there the connection isn't there. It's just a place. So the feelings can still be a lot different in a lot scarier and can lead to you know to other actions because of you know not really having that connection. So I think at times possibilities that to maintain those connections.

Judy: Let me just get to Guy again, who has been on mute for a long time back in.

Dr. Eakin: Can you hear me now? All right.

Judy: Okay Guy, you had something you very much wanted to tell us?

Dr. Eakin: Would you know it's been long enough. I think that I can't recall what that was, I had to apologize for the technical issues we're having a computer keeps crashing.

Judy: Okay. Dr. Brangman, you were about to say something?

Dr. Brangman: Well, I was gonna say it's very easy to pick out curtains and matching wallpaper and put a potted plant in the lobby the hard work comes in providing appropriate staff training. So you don't want to feel like you're in a hospital. This is probably not the best time to have a roommate that's gone from the college days, but I think staff training is the hard work of these kinds of facilities and certainly in a hospital setting, because that's the most valuable resource and that's the one on one care that everyone needs at this stage.

Judy: Oh specific training programs that are very innovative and that might teach personnel, how to react with people with dementia and Alzheimer's.

Dr. Fazio: Yes, of course the Alzheimer's Association programs we… There are a lot of good programs out there all over the place. Of course, but you know, like I mentioned before, the association brought stakeholders from all different environments together to come up with dementia care practice recommendations that then resulted in training programs that are available both you know as stand up courses through our chapters all over the United States as well as online through programs that people can take online. I think the key is, and I know folks have touched on this before, is that we have so much work to do as a country to get really good training as part of people's education. So, you know, we're really looking at ways that we could bring good quality Dementia Care standards in at a bunch of different levels right at the at the school level on people certification, you know, as they continue to have education through continuing education and then also for any type of licensure exams or things like that and you know we're making advances state by state with that but you know hopefully the Alzheimer's plan. The National Alzheimer's plan will bring us to a bigger level for all of that.

Judy: I have a question for Guy Eakin. Guy, since you're vice president of scientific affairs. It's at Brightfocus. I'm going to ask you a toughie. And that is would you want to take as you know we're developing scientists in this country are developing markers for Alzheimer's, would you want to take one yourself. Would you recommend it to friends or relatives?

Dr. Eakin: I mean it's an interesting question and I actually when I talked to some of our scientist. I know there's one scientist that has one rule in his laboratory and says that nobody can genotype themselves, any of his staff could not genotype themselves for a particular gene because it's a too much of an emotional burden for someone to bear. If they find out at a very young age, you know, that they may be at a higher risk for this, but the quick answer to your question is, I'd have no problem with that. I think what it affords in terms of my ability or if I were considering that with a family member. What it affords in terms of my ability for planning and for engaging. Let's say we were talking about a relative, engaging them and their own plan and making sure that we know what their desires are I have I have no problem.

Dr. Brangman: I would just raise a little bit of caution though because I do have adult children who asked me this all the time. And right now we don't know what turns genes off and on, and what means the biomarker appear or not. It is a huge burden to live with it could have a lot of ethical considerations and it may impact your ability to get certain jobs or to get long term care insurance or life insurance and so we don't have enough information yet to know the significance of this so outside of a research study. I'm not sure if I would recommend general screening of any of these markers until we have a cure and or until we have a better sense of what those markers really mean for you on a personal basis.

Judy: George, I’ll ask you the same question.

Dr. Vradenburg: Well, I think this is a real dilemma, you know, being close to this disease. On the one hand, you'd like to know everything about your future and about your risk factors and to be doing to prepare yourself the rest of your life time with family time on a job, whatever. On the other hand, there is not much you can do if you are otherwise engaged in the healthy lifestyle and otherwise managing your core responsibilities. So my wife and I have not gotten genotyped, not motivated to do it and we have been motivated, not to do it but we have not done it.

Judy: Now, this is question I would like to once again as Dr Brangman about. And this is from a Facebook user Marissa, and she asked “when is the appropriate time to discuss the risk of dementia with patients and their families. What coping mechanisms are most effective?”

Dr. Brangman: Well the risks should be discussed when somebody has high blood pressure or diabetes when somebody is obese or they have high cholesterol. I think those are clear markers, we know for cardiovascular health and they also could impact brain health. The causes such a prevalent in older adults and I tend to see most older adults we generally have a conversation about advanced directives and plan in general and planning and what you would like to do, where would you like to be to make sure someone has a health care proxy somebody who understands your values and your wishes because you cannot predict every scenario as you're sitting in someone's office so you need somebody who can kind of be flexible and discuss things as they occur. So it's kind of a double pronged approach when I have somebody who comes in and we make the diagnosis of early Alzheimer's disease or another dimension. We definitely include this advanced planning and discuss values and wishes at that time.

Judy: Okay. Thank you very much. I'm going to ask this of George Vradenburg began and it's a question from Ellen Sylvia's on Twitter and I suspect Ellen is fairly young. She asked how much money will an 18 year old today need to be able to take care of themselves at age 65 until death, George. I want you to take out your crystal ball.

Dr. Vradenburg: Well, I think the best of assisted living. Obviously a lot on inflation in the light but I'll put those aside, but today the lowest cost nursing home is easily $30,000 a year and the I would say assisted living at a really pretty good quality is $120-150,000, a year now most people are recommended that you will, on average, spend about three to four years in some sort of residence. So that means you know perhaps a half million dollars so of course that is in today's dollars and that assumes that you do not have a significantly longer period, disability, which requires your stay in a residence longer than that. It's very difficult. I do think I think Dr. Brangman earlier mentioned this, we need to be thinking much earlier on life about saving for retirement, because retirement is so much longer, particularly for an 18 year old today retirement could be 35 to 40 years if you're thinking that you're going to retire at 65, which probably you won't, but even if you're retired and 70, you're likely to be retired for 25 to 30 years. That's a long period of time. If you're going to rely on your personal savings. So starting very early and a personal savings account having the discipline to put that particularly starting at 18, putting much aside every week or every month. But really, staying disciplined about saving during your entire life is clearly very smart because my guess is that Medicare will not be there for you. And the way that you think it may be for today's adults and it's possible that Social Security is not going to be very significant in terms of income that's currently give you at that age. So I think that there's no question that we have to find mechanisms to encourage Americans, perhaps even incentive Americans to start saving very early and doing it consistently during their life.  There have been some proposals that says at the time of birth, an American citizen ought to have $1,000 put into a health savings account and allow that to accumulate during the course of his or her life. And indeed, encourage people to put money aside and allow that savings in those health savings accounts to accumulate tax rate and to pay for chronic care costs because disability can hit you at any point in life, but to pay for the cost of disability at some point during the course of your life but encourage that kind of savings almost from the date of birth.

Judy: I'm going to ask Dr. Fazio on the same subject, should we really be putting the onus on the individual who is getting older or who's destined to get older and shouldn't we be demanding more of our government? I mean, these health care facilities these long term assisted living facilities cost as George has just said a fortune. Many Americans won't be employed for 65 years or 50 years. Shouldn't we demand be demanding of our government the care of us when we're old?

Dr. Fazio: Definitely and I think that everybody sort of touched on that at some point or another in this discussion, but we definitely need to look at a better way to care for older people in this country and hopefully we'll be making some in ways with the National Alzheimer's plan for people with Alzheimer's. These will be making a start, so that we can have a large plan to really deal with the tsunami, but I totally agree. We need to look at a way that that we can really meet the needs of this growing population and possibly look at other countries as examples.

Judy: Dr. Brangman, I wanted to ask you specifically when you see since your area is older people. When you see older people. Are they aware of the costs involved in their ailments and their diseases and dementia is there is there any way for them to wrap their minds around this issue?

Dr. Brangmna: Cost is a very prevalent issue. Most of the patients that I'm taking care of right now are survivors of the Depression era and they've been saving for a rainy day and sometimes they don't recognize that this is the rainy day they're very concerned about running out of money. They're very concerned about being a burden to their family. In fact, that's one of those things that I hear on a regular basis. They don't want to be a burden to their families. They have great concern about what their kids have to do for them. So this is very prevalent. There's so much confusion about who pays for what, I have patients that are in that gray zone where they don't quite need a nursing home, but they can't live independently and a lot of that care comes out of pocket and people impoverished themselves. It's very hard to save enough for this kind of care because costs go up so reliably every year and our health care system is very fragmented so that the care isn't happening in a coordinated way. It takes a lot of extra work to make it all happen in a smooth way.

Judy: Through a more delicate question as a follow up Dr. Brangman, do some of these patients talk about ending their lives prematurely as a way of getting out of a very difficult situation?

Dr. Brangman: In general, no. I can go to cocktail parties where people will say “If I ever get like that. Take me out back and shoot me” and it's kind of like the standing joke. However, when people actually get to that stage. Most of them are not thinking that way. And I think a lot of this has been overblown in the media, although there are people who do end their lives and we do periodically hear about homicides, suicides and things like that. That's not the general rule. I think that we have the ability to solve a lot of complex problems in our society. And I think this is one of them. That's within our ability to solve. If we can get by all of the political discord and roadblocks that are out there.

Judy: I'm going to ask that same question of Dr. Fazio, I guess because he's with the Alzheimer's Association. Do people talk to you about ending their lives prematurely as a way of not facing the difficulties of aging and dementia and Alzheimer's?

Dr. Fazio: That's a good question and then it does come up from time to time, but it really isn't something that we hear a lot of, you know, I think now you know we have the early stage Advisory Council where we bring people with early stage together and find ways to make their voices heard and I think really helping to educate folks about the disease is really number one: educate the person with the disease or the person who may be getting the disease as well as caregivers, because there still is so much stigma around this disease that we really, really need to work on. So people really have the accurate knowledge about disease. So they really can think ahead and plan as comfortable as it is for them.

Dr. Vradenburg: Judy I you know it's interesting to use the word prematurely end their life. Thing is a we are all going to die. And I guess the question is what's premature for one person is maybe appropriate for another person, but we in this country do not, we cannot in the public discourse talk very often about what a good quality of death is. That you have palate palliative and hospice care at the end of your life, which will, to the extent that's conceivably able to do so. Make your quality of life. Near the end of your life as great as it can be. And the constant commitment to machines and to mobilizing every last ounce of human energy towards extension of life sometimes can make the quality of life, Near the end of life pretty terrible for those that do not make clear their wishes early and because there is going to be an end of life and better that you make clear how you would like your life to end what stage and what circumstances, then putting you through what undoubtedly is and so many instances the struggle at the end of life to try and keep you know your mother or your father alive against all odds and against the inevitability that they're going to die. They should die a quiet and quality death and not one that strained. It's in and out of hospitals, it's constantly on machines inside to Brandon's earlier pointed out in another context constantly poked and prodded for the last hours of your life.

Dr. Brangman: I think that's another area where we're in denial. We're in denial about aging and were denied in denial about the end of life. I take care of patients all the time in that phase and there's often a delay and people accepting they go in within 24 hours of life and therefore they missed that opportunity to have a good death and that may sound like an oxymoron, but you could have a good death with the right people trained to help you.

Dr. Vradenburg: Have your family around you and saying goodbye in a loving way rather than your families being dispersed and not there and otherwise struggling.

Judy: I think you're one of the few doctors Dr. Brangman I've heard talk that openly about it and George I gather you couldn't give me a great deal of thought yourself to this issue of a good death. I know that that does as you said sound like an oxymoron, but it is something we all have to consider.

Dr. Vradenburg: So there's some at least anecdotal evidence that in fact if you have a hospice type of conversation, not in the last two or three months of your life but nine months or a year before and you emotionally accept the proposition that you will die and you feel that you have a degree of control over the circumstances, understand that you will not be in pain and can plan that with your family and the like that you actually have a better quality of life in the last period of time in your life and emotionally a better death because of the ability to connect with families to resolve issues. Otherwise, deal with things in a way that you complete your life rather than having this feeling of struggled for the next hour because I want to live one more hour. Well, you're gonna die. So at some point. And I'm not suggesting that we ought to encourage people to commit suicide early. I'm not saying that at all. But I am saying that we need to understand the inevitability of death and the idea that you can plan a better course near the end of your life than a bad one.

Judy: I wanted to ask Dr. Fazio and I guess what George and Dr. Brangman were saying resonates with you as well.

Dr. Fazio: Yes, definitely. I mean, I think that we moved. I think your original question was about somebody taking their life and I was assuming that was sort of earlier on in the disease. Whereas now we're sort of talking about end of life and you know palliative care as well as hospice care. I definitely agree with what both of them said, I mean, I think it's important to have that conversation earlier it's important for us to have that conversation as a as an entire what's the word entire sort of society. Thank you. Yeah, thanks. That but we really need to really need to look at that, like with like we were saying about aging too and really help people, plan ahead for that and plan ahead for how it is they want to experience that.

Judy: I know exactly what you're talking about. One of the first things that surprised both my sister me when we were looking at long term care facilities that dealt with Alzheimer's is that a middle aged man whose father had advanced Alzheimer's said he was so glad that facility was right next to a hospital because his father who had very advanced Alzheimer's and was dying had had a heart attack and so glad that heart attack had been the heart had been repaired and my sister and I looked at each other. We thought I don't know I don't know that that's the right resolution of this issue. If you have advanced Alzheimer's and or dying anyway.

Dr. Vradenburg: So there are there are numerous cases where I have heard anecdotes again or 95 year old women are getting mammograms and you know in there and moderate to too late stage Alzheimer's and you say, what are we doing here we have here there's a rule that says you have to get a mammogram every year. But at a certain point, common sense kicks in, to say, in fact, they're excessive procedures with respect to, you know, people in later stages of this disease which really unbalanced causes a family decision and not you know necessarily societies decision by any stretch of the imagination but where the year of judgment would suggest that these are excessive procedures that may in fact create more harm than good.

Judy: Dr. Brangman and Doctors Fazio and Vradenburg I would like to, and Guy, of course Guy Eakin. I'd like to thank all of you for participating in this fascinating discussion about the tsunami of dementia, that is coming fairly soon. I see from the clock that our time is about up and I know we could talk about this forever and ever. And we'd still have more ground to cover but I'd like to thank all our team membership who generously participated today and thanks to everybody in the TEDMED community, particularly to all of those of you and there are quite a number of them who sent in questions via Twitter, Facebook, whatever we very much appreciate your questions and we very much appreciated answers from our panel, as I mentioned this style of will continue at tedmed.com. You can also post comments and questions on TEDMED’s Facebook page and we welcome everyone's input. Join us for our next live events discussing active lifestyles. On Thursday, February 28 at 1pm Eastern Standard Time and wellness programs that work day for at 330 until 430pm Eastern Standard Time. And finally, we want to say thank you again to the Robert Wood Johnson Foundation which sponsors the great challenges program and to our wonderful panelists. You've been terrific.

All the best to everyone out there. Thanks. Bye bye. Thank you.

This content was first posted on: February 1, 2013
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