Dr. Maria Carrillo is the Senior Director for Medical and Scientific Relations for the Alzheimer’s Association, a national group headquartered in Chicago. Its goal is a world without Alzheimer’s.
Dr. Maria Carillo
Dr. Carillo talks with the Marist Poll’s John Sparks about the prevalence of the disease, the costs of caring for Alzheimer’s patients, the signs of the disease, and the latest on the search for a cure.
John Sparks
Dr. Carrillo, you’re a Senior Director for Medical and Scientific Relations for the Alzheimer’s Association. Can you tell me that what entails?
Dr. Maria Carrillo
You know, my responsibilities vary from essentially really keeping an eye on our grant program, our international research grant program. It’s a program that awards on average around $20 million per year to medical research and the field of Alzheimer’s disease, and my job is really to oversee all of the applications that come in and then to ensure that when we make our decisions, they – – the grants are awarded to the most meritorious of the applications that come in.
John Sparks
I know the Association does many things. I think education is one of the primary areas. Can you briefly describe some of the other services that the Alzheimer’s Association provides for people?
Dr. Maria Carrillo
Certainly. We have a 24-hour call center, that’s very important part of our mission, and that is to make sure that we are there to serve people suffering from the disease and their families 24 hours/7 days a week, just to make sure also they have information in times of crises, but also information on how to talk about the future of Alzheimer’s disease in their family, how to plan for the future, how to talk to social workers or have family counseling sessions at our offices across the country. We also have several informational and educational sessions that can be had through the Alzheimer’s Association services at our national chapter offices across the country. All of them have libraries; support groups; certainly, again, family counseling opportunities, all of them free to the public.
John Sparks
Now we hear a lot about Alzheimer’s disease and dementia. Can you tell me what the difference is between the two?
Dr. Maria Carrillo
Certainly. And I think that is a very common misconception. Dementia’s actually an umbrella term. It’s like – – I liken it to saying, for example, cancer, and then you really have to follow-up that up with saying, “What type?” And when you say that, then when you ask me what type, you have Alzheimer’s disease, which is the most common. You have vascular disease, which is the second most common type of dementia, and then you have other types like frontal temper lobe dementia, Lewy body dementia, et cetera. So really dementia is the overarching term.
John Sparks
Okay. Now we can conducted a national survey and we found that a majority of Americans personally know someone with Alzheimer’s. How prevalent is Alzheimer’s in the United States?
Dr. Maria Carrillo
There about 5.3 million Americans living with Alzheimer’s disease today and there are over 12 million Americans actually caring for those individuals, family members, other professional cares, et cetera, and so it is quite a lot of people affected by the disease. But we certainly also know that in the future, we are facing a really large increase in that number because the baby boomer of our population is starting to turn 65 and older, and that actually starts happening next year in 2011.
John Sparks
Is it increasing, or are we just becoming more aware of it?
Dr. Maria Carrillo
That’s a very good question and we hear that question quite a bit. I think it’s a combination of the two, so we’re living longer. I think on our website at alz.org, we have a lot of information about a report called Facts and Figures and it actually tells the story that we have been very successful in terms of biomedical research investments in lowering the incidents of many other diseases, like cancer, specifically breast cancer, prostate cancer. We’ve lowered the risk of heart disease – – of death rates for heart disease, for… And so with that, we have been able to really allow the American public to live longer. By being so successful in research and other areas, we have been a little bit negligent in research in Alzheimer’s disease because the death rate for Alzheimer’s disease over the course of the same years that other diseases went down, actually went up by 46%, a little bit higher than 46%. So, we are living longer. We’ve bought ourselves fairly healthy lives from the neck down, and now, I think it’s really time to turn that investment to the brain and to Alzheimer’s disease, because we need the stop this disease so that we can live longer in healthy fashion and actually know that we’re living longer.
John Sparks
Absolutely. Now many of those that we polled told us they had a relative or friend with Alzheimer’s, so we asked them if the cost for caring for that person created a strain on their family finances. What kind of cost does one incur when caring for someone with Alzheimer’s?
Dr. Maria Carrillo
Well, certainly we know that medical costs increased quite a tremendous amount and caring costs in general increased. So, health care costs increased because when a person is hospitalized with Alzheimer’s disease, they don’t just need hospitalization that addresses that particular need, so for example diabetes or a heart disease or a broken hip or broken knee. When a person has dementia, a lot of other things come into play. It’s hard to determine pain levels. They need many more services to come in. Sometimes, they must be watched in a special unit, because they perhaps might wander or they don’t understand that they are plugged into, for example, an IV machine or a heart monitor, and they’ll take those things off. Again, because they have memory loss, they’re not quite sure of their surroundings, so costs escalate just for regular issues. However on top of that, you’ve got the issues that over time once a person moves on from sort of the early stages of Alzheimer’s disease, they’re going to need 24-hour care. They need to be watched, again, for the same reasons. They might wander because they don’t recognize their surroundings. Even though it’s a home or a sibling or a child’s home, they don’t recognize the surroundings, or they might forget and leave something on the stove or many can actually burn themselves in the shower because they forget which is the hot and the cold or that the hot and the cold need to be adjusted. Many won’t make themselves food in the right way because they don’t remember how to make a sandwich, so many issues that really require 24-hour care.
John Sparks
I know this is a question you get asked all the time and that is: What are the signs of the disease? If a friend or family member have told you, for instance, that they’re being forgetful or had concerns about not remembering things, does that mean they’re getting Alzheimer’s? What are the signs?
Dr. Maria Carrillo
You know, I… that doesn’t necessarily… um, you know, certainly forgetting certain things is not a – – I guess something to be too worried about because we all forget things. Especially under stressful situations, we forget where we put our keys or where we put our wallet. But I will tell you that I have the Alzheimer’s disease in my family. My mother-in-law was diagnosed with the disease just six months ago. But maybe about two years ago, I started noticing some changes in her, so some of the early changes that one can notice and I would really recommend certainly looking at our website, and that is alz.org, and actually know the ten signs is something that we really stress in our website. And then it’s some things that we stress is that memory loss that actually disrupts your daily life is really the key. So, it’s important to think about: Does a memory loss, does losing your keys every single day, is that interrupting your daily life? Are you experiencing challenges in perhaps planning or solving problem? It’s hard for people who have Alzheimer’s disease and have the beginnings of Alzheimer’s disease to actually keep track of several things at the same time, so complex tasks. Another thing to look at is: Is it difficult to complete familiar tasks that you’re used to completing, especially when they’re a little bit more complicated, like how to follow a recipe that you used to be able to do or to how use the microwave oven that’s get a little complicated, how to program your coffee maker? That’s a little more complicated than usual. So these are some of the things we kind of look for.
John Sparks
Now I have family members on both sides of my family who have had the disease. Do I need to be concerned about myself? What can I do?
Dr. Maria Carrillo
You know, absolutely. If you have a first degree relative that has Alzheimer’s disease, I think anybody with – – in such a situation should be thinking about their own risk. So, for example, my mother-in-law has Alzheimer’s disease. She is one of… She’s actually the third of four siblings to be diagnosed at this point, and the fourth is the youngest of all, so we’re hopeful that the youngest won’t get it. But that… What does that mean? That translates into me knowing that in my husband’s family, he’s one of the three, he – – they have most likely inherited some type of a risk, genetic risk for Alzheimer’s disease. And so what are we thinking about now? Well we’re thinking make sure that in his middle age, he stays as healthy as possible. He eats right. He eats antioxidants. He makes sure that his diet is healthy. He makes sure to watch his weight, to make sure that he avoids diabetes, if possible, avoids the heart conditions if possible. If not, then make sure that they’re treated and make sure that they’re watched and make sure that they’re kept under control.
John Sparks
Okay, so what about a cure or a vaccine? What’s new on the horizon in that area?
Dr. Maria Carrillo
You know we have a lot of hopes in terms of medications for Alzheimer’s disease in the near future. There are a few vaccines that are actually in phase three testing, which is the phase that’s right before you would get approval to be used in a doctor’s office and in a pharmacy. So, that’s exciting. And prevention’s probably a little bit further off. So, we’re very excited that not only vaccines, but a few other types of drugs are in the pipeline for hopefully slowing down the progression of the disease, and you really have to start there because experts today really understand that Alzheimer’s disease begins many, many years before the first clinical diagnosis is made. So, for example, I mentioned my mother-in-law, six months ago she was diagnosed, but we noticed, well I noticed that she was experiencing symptoms for two years and she may have experienced symptoms for many more than that, and so, we understand that we really don’t want to give a vaccine or any type of medication at the point where today we’re diagnosing Alzheimer’s disease. We want to be able to give it 10 years before. So, the movement of the future, of science and Alzheimer’s disease is really to a very early detection before there are clinical symptoms of the disease and then try to interfere then. Now, we’re moving towards that very slowly because, first, you have to prove some advantage in the current drugs we have with the population we have available today. But we’re making definite moves in the direction in terms of research to move that clinical diagnosis much earlier and be able to interfere with the disease much earlier, and that would be what we would call a secondary prevention, not a primary prevention because primary prevention involves avoiding the disease completely, and we still can’t prove that. But, secondary prevention means we’ve avoided the symptoms, and that would be an excellent place to be in the future.
John Sparks
Well, I certainly hope we get there. The sooner the better. Dr. Carrillo, I really thank you for your time. Is there anything else that you wanted to add for our listeners?
Dr. Maria Carrillo
One last thing I would just leave all your listeners with and that is that Alzheimer’s disease research can never move forward unless we have more federal funding, and so the Alzheimer’s Association has – – is proposing through our Public Policy and Advocacy Office in Washington DC a new bill called the National – – The Alzheimer’s Breakthrough Act, and that calls for $2 billion for Alzheimer’s research. And, as I mentioned earlier, it’s only by investing in the research that we’re ever going to actually eradicate this disease, and we know we can do it, because we’ve done it in other diseases. So, we really need to push for $2 billion for Alzheimer’s research and push forward on the research that we have today and accelerate progress, because we cannot afford to wait. I would just leave you with that.
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