Alzheimer's disease, part 1

Ms. Friedman served as Executive Director for the Texas Association of Partners in Education where she opened the first office for this statewide association focused on bringing parents, educators and business leaders together on behalf of improved kindergarten through 12th grade education. She has also served as Director, Regional Business Assistance for the Thomas Jefferson Partnership for Economic Development from 1999 to 2007. Sue Friedman became President and CEO of the Alzheimer’s Association of Central and Western Virginia in 2007 where, among her many duties, she is spokesperson for the cause overseeing development and educational programming, the helpline, public awareness, community and donor relations and management concerns. Among her awards she garnered the influential Women of Virginia 2011 Award from the Virginia Lawyers Weekly and the Leader’s Leader Annual Award in 2009 from the Leadership Charlottesville Alumni Association. According to figures compiled by the Alzheimer’s Association to date, Alzheimer’s Disease is ranked as the sixth leading cause of death in the United States with upwards of five million Americans living with the disease. One in three seniors will pass away with Alzheimer’s Disease or some other form of dementia. At present, the cost to our country will be upwards of $203 billion. It has been projected that this figure could rise to $1.2 trillion by the year 2050. The Alzheimer’s Association further notes that an American develops this disease every 68 seconds. Between the year 2000 and 2010 the mortality rates from Alzheimer’s Disease climbed to 68% while death from all other major diseases inclusive of heart disease, which is the number one cause of death, had declined. Our guest today will enlighten us about all aspects of the disease, discuss breakthrough research and treatment possibilities and importantly, how we might all become involved in combating a condition which affects every American family. Welcome again, Ms. Friedman.

Sue Friedman: Thank you so much, Jan.

Jan Paynter: Before we begin our larger discussion, Sue, concerning the nature and progression of the disease, tell us briefly what it is that brought you to your commitment to Alzheimer’s Disease.

Sue Friedman: I think as with most of us when you become personally touched by this disease, you realize its impact and you realize that you’re vulnerable and that you’re concerned for yourself. I joined the Association in February of 2007 at that point looking for a good professional opportunity and the Alzheimer’s Association offered that. They were looking for a director and I was ready to assume that level of responsibility and so as I was learning about the Association my sister-in-law, a vibrant social worker in the Boston area was diagnosed with Alzheimer’s. So not only did I see this as a professional opportunity that’s been very good, I now see that as the one place I need to be because Alzheimer’s is the epidemic of this decade and will be the crushing health issue of this country if we don’t change that trajectory.

Jan Paynter: Sue, for those of us who are unfamiliar with the symptoms of Alzheimer’s let’s discuss what it is, how Dr. Alois Alzheimer first discovered it in 1906, something about the brain chemistry involved and what to look for as in some of the warning signs of the disease.

Sue Friedman: Sure. Well, most people probably don’t know but in 1906 a German psychiatrist, Alois Alzheimer, had a patient, Deter, and she was exhibiting symptoms of memory loss but also paranoia and many other symptoms and upon her death he conducted an autopsy and found what are now called the hallmarks of Alzheimer’s Disease, the beta amyloid plaques and the tau tangles and he at that time—again, this woman was in her very early 50s—he at that time in 1906, named it Alzheimer’s Disease and said it was a very rare disease that happened in midlife. And so it wasn’t until the 1970s—and I’ll say just as a side note, my Association was formed in 1983 so that gives you an idea of—this was not on our radar screen at all throughout the world and certainly not in this country.

Jan Paynter: Oh, I see.

Sue Friedman: So in the 1970s a group of what we call enterprising pathologists in Great Britain began to see on autopsy these beta amyloid plaques and tau tangles in older patients at autopsy and they are the ones who said, ‘Wait a minute, we kind of remember that one sentence in the medical textbooks about Alois Alzheimer but we don’t think it’s a rare disease and we don’t think it’s a midlife disease.’ Again, we’re talking 1906 and what was life span there, okay. They said, ‘We are seeing this more and more in our senior population.’ So it was through there a connection with new technologies, pathologists that they said, ‘I think we need to revisit this.’ So indeed we began to see that Alzheimer’s is absolutely, the majority of the time, a disease of the aging brain and that the longer one lives the more likely it is that you will develop Alzheimer’s.

Jan Paynter: Sure. It makes sense. Sue, are there specific symptoms of Alzheimer’s that are readily distinguishable from normal aspects of aging?

Sue Friedman: You know, I’ll say yes and no. There are very specific symptoms but what we say to everyone, ‘It is very important, if you notice more than one of the warning signs’, we have 10 warning signs now that have been developed just in the last five years because of the advances of research. So if you notice in yourself or someone else more than one of these warning signs, chart those, write those down and bring them to your doctor’s attention because there are other conditions that can mimic those memory issues that we might see with Alzheimer’s. Depression is one, vitamin deficiency, specific vitamin deficiency is another. Unfortunately, and this happens all too frequently, the unintended and negative interactions of our over-the-counter medications, something we buy at CVS versus a prescription medication so we always encourage people not to be reluctant to pursue investigating this because they don’t want a diagnosis because it may well be that we can rule out Alzheimer’s because we find another reason. So we want people to know that–don’t be—don’t avoid the 10 warnings signs and don’t avoid the conversation with your physician because we absolutely want to make sure that it’s Alzheimer’s and on the way to making sure it’s Alzheimer’s you’ll rule out these other things or maybe rule them in.

Jan Paynter: It makes sense. Sue, we were talking before the program about—in reading, one of the gentlemen who writes on agingcare.com, which is a wonderful site as well as yours, talks about the fact that Alzheimer’s is now where cancer used to be which is that people kind of whisper about the disease, they don’t want to deal with it and that goes to just what you’re talking about which is trying to educate people, as you do so well, not to fear but in fact understanding also is, from what I’ve read, that the earlier you find Alzheimer’s the more likely that you can make attempts to stave off.

Sue Friedman: Yes. The research is beginning to show very clearly that the initial components of Alzheimer’s begin in our brains 10, 20, 30 years before we see those symptoms so the ultimate goal would be for us to have a screening that everyone went through at age 35 or 40 and if indeed we saw any of the beta amyloid plaques or tau tangles there would be an intervention, there would be a prevention treatment that could be offered. But what we want people to know is that knowing that Alzheimer’s is a diagnosis is of course devastating.

Jan Paynter: Of course.

Sue Friedman: But it also gives one an opportunity to fully plan their life and to take advantage of quality of life to the extent they want to, that they are in control as long as they can possibly be in control, and that they leave directives and plans when they are no longer in control but the other thing, and this is really important to the Alzheimer’s Association, you can participate in part of the studies. I know my sister-in-law was involved in two groundbreaking studies in the Boston area after her diagnosis and even now they are very proud of the fact that she helped move the knowledge forward. So we really encourage people to not shy away from it and if indeed there is a diagnosis of Alzheimer’s to the extent they can with their family, and we’re there to help you, embrace that and become active in your own life planning and participating in being part of the solution.

Jan Paynter: That makes sense. Sue, are there particular segments of the population that are more prone to Alzheimer’s, particular groups of people? I had read some data about African-Americans and Latinos having—being at greater risk for Alzheimer’s.

Sue Friedman: Yes.

Jan Paynter: Also that women seem to be at greater risk of Alzheimer’s. Could you talk about why that would be?

Sue Friedman: Yeah. Well, the women one is a very interesting one. For six and a half years of my tenure at the Association it was because the data showed women live longer, therefore more women develop Alzheimer’s. There’s been some research in the last six months that indicates it may be more than that so the jury is still out on if indeed women are experiencing Alzheimer’s to a greater degree simply because of longevity of life. So that one is still—the jury is out. We did a—we do a study every year called “Facts and Figures” and it is published in March of every year and we take a special project in each of those years and two years ago we looked at the minority populations and we did find a greater prevalence of Alzheimer’s Disease in the African-American and the Latino populations. We don’t have the answer for that, we have some conjectures and some of the conjectures are that diabetes, heart disease, high blood pressure, obesity are all things we now know are risk factors for Alzheimer’s. Those diseases and issues are more prevalent in the African-American and the Latino communities so that could be the connection.

Jan Paynter: I see. That’s interesting, as the socioeconomic factors come into play–

Sue Friedman: They do.

Jan Paynter: –those people who are disadvantaged are therefore vulnerable not just to better—not to having jobs, less employment opportunities but also severe illnesses.

Sue Friedman: Well, and their health practices are compromised at the beginning and we now are seeing the connection between heart health and brain health so if your ability to watch your cholesterol and your blood pressure and take—exercise, watch your diet, watch your weight, if those are compromised because of your socioeconomic situation, then that in turn appears to be a risk factor for Alzheimer’s.

Jan Paynter: Sue, let’s talk about—a little bit about Sundowner’s Syndrome, what is it and how does it function?

Sue Friedman: What the literature shows us and really we see it in practice is that as the day ends the disease process, it creates more of an anxiety and behavior problem as the day ends. There are many facilities, and we work with them closely throughout the area, who create 24 hour lighting within their facility so that the sun never comes up or goes down. It stay—there is continuous lighting and whereas that would be very disconcerting to you and I because our biological clocks are still in very good working order, it actually helps mitigate the impacts of the disease for when you’re dealing with Alzheimer’s Disease.

Jan Paynter: That makes sense. We all know in the past about Seasonal Affective Disorder and how lack of light can affect people emotionally so I can see where with a disease like Alzheimer’s that would be magnified.

Sue Friedman: And one of the things we talked about that may be part of it, when you look at kind of the roadmap of the disease in the brain, Alzheimer’s Disease appears to get to those centers of the brain dealing with feeling and emotion and art appreciation very late in the disease so therefore you come back to Sundowner’s. If my feelings and emotions are pretty intact but my ability to express them and my ability to engage them have been compromised by Alzheimer’s Disease, then I am going to become anxious, I am going to become unsettled and I may have inappropriate behaviors ‘cause I’ve got the emotions and the feelings but I don’t any longer have the tools to appropriately express them.

Jan Paynter: Oh, I see, yeah. Sue, what percentage of Americans with Alzheimer’s are on Medicare and Medicaid compared with individuals without these conditions?

Sue Friedman: Well, this is a disease of the aging and 90 to 95% of Alzheimer’s Disease is seen in people 65 years of age and older so therefore 90 to 95% of those individuals dealing with Alzheimer’s are in the Medicare Social Security systems so it’s a huge risk. In fact one of the data points that we share with our elected officials is for every one dollar we are spending on Alzheimer’s research, predominately through the National Institutes of Health, we’re spending $290 through Medicare, Social Security and Medicaid and that will not be sustainable and that is one of the biggest reasons if you can’t look at impact on families, if you can’t address impact on society and the workforce, etc., etc., let’s look at the money and the money tells us if we don’t change the progression of this disease, either eradicate it, prevent it, find viable treatments or at least delay it five to 10 years so that you don’t have to deal with Alzheimer’s ‘til you’re 100, we will not be able to sustain that level of care.

Jan Paynter: Sue, let’s talk about caregivers and the special challenges that both family members who are caregivers and professional people working with patients deal with, not just in terms of the patients and the behaviors but also in terms of the physical cost and affects on the caregivers themselves.

Sue Friedman: Alzheimer’s is one of the few diseases that really is a disease of at least two. You have the person who has the disease and as Alzheimer’s progresses and I visited my sister-in-law in July in Boston, she is at the point in the disease where her—keeping her comfortable is the goal but the impact on the caregiver grows throughout the disease. The impact on the person with the disease, especially in the later stages is stabilized and it just is—the person no longer is aware they have the disease so it’s not a personally impactful disease. So that impact on the caregiver is becoming more and more a focus of what we are trying to do through the Association and through a myriad of other programs because we’re relying on that caregiver to be part of the team that keeps the quality of life as high as possible for the person with the disease. It’s funny, at my gym even someone said to me, ‘I have a friend whose wife has Alzheimer’s and he’s having health issues now.’ Well, the sad statistic is that one in three caregivers dies before the person with Alzheimer’s because caregiving is unsustainable individually. 24 hours a day, seven days a week providing care for someone with Alzheimer’s begins to take a greater toll on your health than you can give and so we need to really be mindful and help caregivers. Caregiving is not like caring for a child. We’ve had people say to us, ‘Oh, well, it’s like they have another child or they have a child again.’ Children learn. Even two year olds learn.

Jan Paynter: That’s very different.

Sue Friedman: They learn that the stove is hot. They learn and they retain that. Someone with Alzheimer’s cannot retain, cannot learn and retain and cannot remember that the stove is hot and so they need constant eyes on. You can’t put them in the playpen, you can’t have them in the yard playing and so that level of care is absolutely draining on the caregiver so we encourage caregivers to ask themself this one question, and I’m going to take a husband/wife, ‘As a husband of someone with a wife with Alzheimer’s, my job is to be the best husband I can be. Does that include 24/7 care or can somebody else do part of that?’ and that leads me in the role of being the best husband I can be and I think more and more families are getting that, that it’s more important to that woman that she have a loving husband in her corner than he try to wear those two hats all the time.

Jan Paynter: That’s really fascinating and also caregivers because stress is a part, as I understand it, of one of the risk factors in Alzheimer’s. For instance, I have a relative who cared for 14 years for her aging mother and she was very under stress and now she’s experiencing dementia after all that dedication so there’s a real risk to people’s health when they’re giving care.

Sue Friedman: Well and just a P.S. on that previous comment. Nobody else can be the loving husband but that man. Other people can provide the care and that is—and if that helps a family get rid of the guilt, if that gives them permission, then that’s exactly what we want to do because the literature shows that you cannot maintain your health and be a 24/7 caregiver year after year after year.

Jan Paynter: Oh, no, it makes complete sense.

Sue Friedman: And I want to say something about the stress. There was a fascinating study that came out last year, a study, we need many studies before we have fact but chronic stress was indicated in this study as being a risk factor for Alzheimer’s. Acute stress, I have a final in my class and so I’ve got to study for 24 hours and I’m stressed to the max studying for that final. I take the final, it’s done. Acute stress may benefit the brain. Acute stress may help the brain’s plasticity which is something we hear about, the ability to kind of shift gears if you will. So acute stress may have benefit to brain health. Not chronic though, not the 14 years of care.

Jan Paynter: Well, it’s interesting, if you think about running a marathon versus sprinting.

Sue Friedman: Exactly.

Jan Paynter: If you sprint, you can marshal all your energy and your resources because you know that there’s an endpoint. If you had to run a marathon for a year, that would be a very different conversation.

Sue Friedman: Exactly. So that study—there are many I’ve seen that—we, the Association, fund research studies every year, $12 to $15 million worth of research studies and I’ve seen that being a funded study in several—we’re doing follow-ups now so that could be quite fascinating.

Jan Paynter: Well, I was very moved again in looking at agingcare.com at the Caregiver’s Survival Guide, Family Caring for Family because they have a Facebook page entitled “Memory People” which I know you know about and many Alzheimer’s sufferers talk about the disease, they have a number of early onset people discussing it and there was one very, very moving comment by a 59 year old man who was talking about the need as you know to continue to talk to people even if they don’t always seem to respond and he said, ‘You should always talk to us because we’re still in there somewhere.’ Sue, thank you very much. It’s been a pleasure and an honor to discuss this very, very important topic with you today.

Sue Friedman: Thank you so much, Jan.

Jan Paynter: Thank you at home for joining our conversation. If you would like more information concerning the topic under discussion today, we invite you to take a look at our website at politicsmatters.org. We will be posting a number of books, articles and relevant links on many of the issues under discussion today there for you. You will also find a complete archive of all prior Politics Matters programs which you may watch in their entirety at any time. We will be posting extended versions of the interviews online as well and will continue to be adding more content. As always, we are very interested in hearing from you with any questions, concerns and ideas for future programs. We encourage you to email us at jan@politicsmatters.org. We are on PBS WVPT on the last Sunday of every month at 11:30 am. Thank you again and until next time, I’m Jan Paynter and this is Politics Matters. Join us on November 24th for the conclusion of our conversation with Sue Friedman when we will be focusing on current treatment strategies and recent research developments in the battle against Alzheimer’s Disease.