Alzheimer's disease, part 2

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 warning 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: Something that I think is essential in families is consideration of the kids. Kids are part of the family, kids are watching aunts and uncles, grandma and grandpa, struggling with this disease so they should be brought into the conversation. And I know Maria Shriver has been prominent for us in this area and her father, Sgt. Shriver, developed this illness in 2003 and so she was an executive producer for HBO’s The Alzheimer’s Project which produced Grandpa, Do You Know Who I Am? which is based of course on her book—children’s book What’s Happening to Grandpa? So what I wanted to have you discuss a little bit for folks is also the myriad of wonderful children’s books which address coping with this. One of my favorite ones is Still My Grandpa by Veronique Van den Abeele and The Memory Box by Mary Bahr which is 20 years around but still a fantastic book and I know you have some others that you might mention as well.

Sue Friedman: Well, we do. Two things I would recommend. Go to alz.org and there is a whole section on helping children understand and then helping children continue to have a relationship with grandma and grandpa. The second thing is we actually have a lending library here at the Alzheimer’s Association. It has videos and CDs and books and we’d be happy to have individuals contact us either to take some material out of our library or to get the list from us. Third thing I should say, on the website we also have a resource list. We have a resource list of facilities and physicians and lawyers and accountants and we have a book resource list as well. So there’s a growing segment of books that you can find at Barnes and Noble and at New Dominion that are helping children understand what’s going on with Alzheimer’s and how they can still connect and have a relationship and how not to take it personally when grandma or grandpa says or does something that maybe wasn’t very nice.

Jan Paynter: Well, it’s interesting, we talked about this before we started filming today. Very often children can connect with the Alzheimer’s sufferer in a way that’s very unique and very beneficial to them so that it’s extremely important I think for kids to be part of this.

Sue Friedman: And pictures are a great thing. The old picture albums which all of our grandparents have because they didn’t take digital pictures, they have picture albums, to pull those out and go through them, the grandchildren pointing out, ‘Oh, look at the hair and look at the clothes and look at the cars.’ That’s a great way to connect because often time those pictures are things that still have a connection for someone with Alzheimer’s so we really recommend the pictures. We didn’t even touch on employers. 15 percent of the workforce is dealing with caregiver issues so 15 percent of any work site, people are making phone calls, they’re coming in late, they’re leaving early, they’re taking long lunches because they’re trying to fulfill their caregiver responsibilities. So this is absolutely a family issue and a health issue but it is an employer issue too. We’ve got an amazing study about the impact on employers. We want to provide support and education and training to your employees because this is what they’re doing on the job but certainly off the job and so it impacts you.

Jan Paynter: Of course it does. The quality of their work is very much going to be affected by stress levels at home, by lack of sleep.

Sue Friedman: I’ll tell you one employer in town, they had a senior woman who went to the CEO and said, ‘I know that we’ve talked about a promotion for me but my mother’s been diagnosed with Alzheimer’s and I’m going to have to decline the promotion and in fact I would appreciate it if I could have a position that was a little less responsible than the one I have now.’ It’s going to happen, it is happening and so yes, it is a family issue and yes, it is a health industry issue and yes, it is a governmental cost issue. It’s going to infect all of our chamber of commerce members too.

Jan Paynter: And that’s when we’ll get movement on it.

Sue Friedman: I think so. I think so. And we’ve had a number of employers from the Downtown Merchants on the Mall to banks come to us and say, ‘We’ve got customers who’ve been with us for decades and we’re seeing problems and how do we handle that and should we tell the family?’ Big issues. Big issues.

Jan Paynter: That’s a gigantic issue and a very delicate one.

Sue Friedman: A very, very delicate one. So there’s a huge issue in the workplace around Alzheimer’s, around not only customer dealing but also the actual employees that is beginning to become more mainstream. We’ve been working with the Human Resource Association group which is the HR people from companies and more and more they are coming to us and asking us, ‘What is the ethical, legal practice we should be following?’

Jan Paynter: There are so many ways and reasons to engage the larger society in this issue and I think that you rightly point out this is—if you don’t want to do the right thing because of the ethics of it, do it for self interest because it’s very necessary. We haven’t talked about the role of arts and music in helping people work with Alzheimer’s sufferers. Talk about that if you would.

Sue Friedman: Well, now about eight years ago the MetLife Foundation funded a big grant for the Museum of Modern Art in New York City and they developed a program called Meet Me at the MOMA (Meet Me at the Museum of Modern Art) and we have now adapted and expanded this program across the country through the Alzheimer’s Association. It’s a program where we work with all the museums in our region, we work with the Fralin and we work at the Maier, the Taubman in Roanoke and we train their docents so that—and their security staff as well so that they are aware that if something is said or something is done, this is the disease, not the person and then we create small viewings of four or five pieces of artwork with kind of facilitated conversations for individuals with Alzheimer’s and their care partner, most often a husband or a wife. And what we have had is the most remarkable feedback and one woman said, ‘For that hour and a half we were a couple again. I wasn’t the caregiver and he wasn’t the person with Alzheimer’s.’

Jan Paynter: Oh, that’s lovely.

Sue Friedman: So we’ve learned that as the disease progresses it touches the part of the brain that can still enjoy arts, all the arts, late in the disease. So we’ve expanded this art viewing into art making and also into music and dance and poetry readings and so we’re going into all areas of art. We call it Arts Fusion here in our chapter and as an example we might go to a dress rehearsal at the Paramount or at the Heritage or the opera and so—and then again, it’s an atmosphere where everyone who works there understands and knows but it also offers us the opportunity to have very focused engagement in conversation and exploration and it’s just been amazing. We take the art into facilities and I know we were videotaping it and one of our videotapes is a group of women of advanced years and we’re showing them—remember the old Rosie the Riveter poster from World War II and so we’re displaying the poster and these women have such great comments and memories of what life was like for women in the ‘40s. So despite the fact that they have Alzheimer’s those memories are able to be surfaced with these kind of prompts and they are engaging in ways that they hadn’t been able to engage, in today’s life.

Jan Paynter: Oh, that’s very exciting, particularly it seems to me music makes so much sense because for all of us music is really the guardian of our memory and can take us very specifically back to a place so I can see how the connection with music and memory would be very strong for us.

Sue Friedman: We have incidents where—often time groups will come from one of our wonderful facilities to a musical event and we have incidents where they’ll start a song and someone will pop up in the audience and sing every note.

Jan Paynter: They know all the words.

Sue Friedman: And maybe they haven’t had a conversation for six months but they know that song and it triggers.

Jan Paynter: It’s absolutely fascinating.

Sue Friedman: Yes.

Jan Paynter: Sue, let’s talk a little bit—there are so many things I want to discuss with you but I wanted to talk about recent research findings.

Sue Friedman: Ah! Well, the Alzheimer’s Association International Conference on Research was in July in Boston. There were 4700 researchers from the world so I obviously couldn’t go to all the sessions but I went to several that were fastening the intersection between heart health issues and brain issues/Alzheimer’s. So what we’re seeing more and more is that cholesterol really matters and everything that has to do with heart health really matters so the one thing that research has proven now and this is in the last year, exercise. Exercise can delay the onset of Alzheimer’s. It’s proven. And we are talking about exercise when you’re 65 but we’re talking about exercise when you’re 40 too. So the two studies that really made that a fact were mid life exercise and then exercise when you’re over 65 and basically it’s three 40-minute brisk walking sessions a week, routinely, consistently. So the one thing I would say to everyone is if you’re not exercising regularly, you need to do this. You need to do it for your heart and now you need to do it for your brain. So exercise has been proven. The other research that’s looking very closely at diet and the Mediterranean Diet is becoming more and more identified as proven to help delay Alzheimer’s disease.

Jan Paynter: Yeah, this diet comes up more and more in connection with disease avoidance in every area.

Sue Friedman: So while we can’t say it’s definitive yet but the research is pointing towards your—I never say it right—legumes, your beans, your Omega 3s and all those things that are involved in the Mediterranean Diet you need to be paying attention to those in your every day diet now and hopefully in the next six months or a year we will have enough science behind that to say, ‘This is another proven delayer of Alzheimer’s disease.’

Jan Paynter: Oh, this is so important for people to know about, Sue. Sue, how in your view is the decision on Medicare funding, which is due out later this fall, likely to affect these other research options. For instance, those involving brain scans which aid in advances and the treatment of Alzheimer’s?

Sue Friedman: Well, the good thing is the PET scan which is the brain scan that allows us to see, as they say to light up the beta amyloid plaques if they exist, is being used in research and so that’s a given. It’s being used in research all across the country and so that—what the issue is though, can that PET scan be used in every day health and medical practice and Medicare kind of sets the tone for what is able to happen throughout the health and insurance industries. So currently Medicare is saying they cannot approve payment of the PET scan in every day healthcare practice because there is no treatment, there is no course of action. So I go to my doctor and I have a PET scan and I show beta amyloid plaque above the normal amount, what do I do next? Well, we don’t have a disease modifying treatment at this point in Alzheimer’s disease so what we interpret that to say from Medicare is, ‘When you have something that can stop the progression of the disease,’ hallelujah, ‘repair the disease or prevent the disease, then we will have justification for paying for PET scans.’ So that’s where it is now. But it is being used in research so everyone should feel very, very excited that it is through the PET scan that we’re going to be able to move the research forward much more quickly and in many more extensive research ways because now research has a way of knowing if Drug A or Treatment A is working by using the scans.

Jan Paynter: So it’s all the more vital for funding not to be cut and if it is cut we certainly need to get creative above finding other sources.

Sue Friedman: Well, we of course visit with our congressmen. There are four congressmen who serve the central and western Virginia and what we say to them is, ‘Right now there’s about 500 million, with an M, dollars being spent on Alzheimer’s research. Right now there’s about six billion, with a B, dollars being spent and being spent consistently over many years on cancer research.’ Okay, and we say two things about that. Number one, we’ve seen great strides in treatment of cancer. Now, we believe and everybody believes that’s because we’ve had this huge push in cancer research.

Jan Paynter: Oh, of course.

Sue Friedman: So we want to see great strides in Alzheimer’s treatment prevention and diagnosis. It will not happen at $500 million, it simply will not happen and so we do need more funding for Alzheimer’s research and when we are asked, ‘Where do you want to cut?’, we say, ‘We are not going to tell you where you need to find the funding.’ What we are going to say is, ‘We need more funding and we want you to acknowledge that we need more funding and you are the elected official so please find more funding.’

Jan Paynter: We need everyone watching and all citizens to make contact with their lawmakers, congressmen and representatives and really demand that we have this funding.

Sue Friedman: Well, and not just cancer. When you look at the past decade in cardiovascular health, when you look at the past decade in AIDS/HIV, which was literally 10 or 15 years ago a death sentence and now people live and live a long, quality life with AIDS/HIV virus, and you look at their research dollars, $2, $4, $6 billion year after year after year. We know what we need to do. We simply need the will, the commitment to do it. I’d liken it to—there was the race to put the man on the moon, could have been a woman but it was a man, and it worked. We can beat Alzheimer’s. We have to have the commitment to make that happen.

Jan Paynter: Well, and it certainly seems possible. There’s an intriguing study that I mentioned to you before the program which was in a July 17 edition of the New York Times international section and here they reported on a very thoroughgoing study in England, Wales and Denmark which found that dementia rates, long expected to skyrocket in people 65 or older in future, actually plummeted by 25 percent in the past two decades from 8.3 percent to 6.2 percent and there was another study conducted in Denmark according to the same Times article that found that people in their 90s scored better than those tested a decade earlier. The Lancet published a study which indicated what they’d long suspected which is—comes back to what you discussed earlier in our program that people who are healthy and better educated can stave off and in some cases avoid Alzheimer’s disease altogether, which I found actually very, very inspiring and hopeful for the disease.

Sue Friedman: Yes, it is very encouraging news and of course in our goal to help people become savvy consumers of research, we always want to say, ‘It’s one compelling study but it’s one study and obviously there needs replication.’ Having said that, it gives us an opportunity—I know the Association has been very intrigued by this because looking at all the factors that might be different in Great Britain, Denmark and Wales as opposed to the United States—the health systems, the educational systems. What are those touch points that might be different that this country in particular might want to reconsider? It’s often been said that we have a medical model in this country versus a health model in this country. It’s going back to our conversation. If we’re going to say that heart health is brain health and we know the many factors involved in heart health that begin when you’re an adolescent and continue to the day you die, that’s general health factors in many ways. So if general health is going to prescribe how you’re going to deal with your older years and that education is also going to be a part of that, then we certainly are going to have to look at how we change perhaps our way of life to avoid or delay Alzheimer’s.

Jan Paynter: 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 and the last thing I would love to say is, and you eluded to this, it will take all of us so we encourage everyone to do something in this fight against Alzheimer’s.

Jan Paynter: It’s always important for everyone and vital for people to speak up and make their voices heard.

Sue Friedman: Yes.

Jan Paynter: In closing today I would like to dedicate this program to my lionhearted Aunt Phyllis Haniotis who faces each day, as she has throughout her life, with an indomitable spirit and ever generous curiosity about what is happening in the lives of others whilst coping with the most grievous of life’s challenges imaginable. Herself a child of immigrants, Phyllis broke the glass ceiling for women in banking in New York City, becoming the first woman senior vice president of the then New York Bank for Savings, daring to hire women and minorities at a time when such practices were unheard of and verboten. She issued a legal challenge to the bank when she was retired with a pension that was half that received by her male counterparts occupying far lesser banking positions. This one’s for you, Aunt Phyl, and for all those who rise each morning face to face with the setting of the sun, rise with more courage than the rest of us could ever imagine with our lesser mind’s eye. 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.