JACKI LYDEN, HOST:
It's WEEKENDS on ALL THINGS CONSIDERED from NPR News. I'm Jacki Lyden.
ROBERT GOYER: (Singing) Happy Birthday to you.
LYDEN: Robert Goyer has his good days and his bad days. Here he is singing happy birthday to a friend on one of the good days. But we're here to talk about the not-so-good days. Robert Goyer has Alzheimer's disease. He joins more than five million Americans living with that disease today. And the number's only going to increase, in part due to the aging of baby boomers.
The National Institute on Aging estimates that the number of people living with Alzheimer's is expected to nearly triple by 2050. And the cost of coping with the disease currently estimated at $215 billion will soar. In 2050, that number's projected to jump to half a trillion dollars. So what does this all mean for our already overburdened health care system, for our economy and perhaps, most of all, our families? That's our cover story today: Alzheimer's disease, the looming epidemic.
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AMY GOYER: You know, the first time I really thought, oh, no, this could really be happening is we were watching a movie. And he asked me the name of the movie like 20 times within a half hour. And I thought, this is not normal for him.
LYDEN: It wasn't normal. In fact, it was Alzheimer's. That's Robert Goyer's daughter Amy. Amy is 55, Robert is 84. And as his condition deteriorated, Amy made a pivotal decision: return home to Phoenix to care for him.
A. GOYER: As time progressed, he was having trouble managing the finances; the paperwork was overwhelming. He would get incredibly stressed out. You know, and just little things about his memory kept getting worse and worse.
LYDEN: Amy Goyer was already familiar with caregiving. She's worked for AARP for 19 years, giving advice as a home and family expert. When she first began taking care of her father, she decided to start a blog, and she turned it into a Web video series.
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A. GOYER: We started needing someone with them 24 hours a day. I have to work. I can't be there all the time. My sisters live out of state, so we're moving in together.
LYDEN: In the series, Amy offers advice to caregivers like herself who are struggling to take care of their frail loved ones.
A. GOYER: It's really hard. It's very challenging, and there are times I get very exhausted. And I just feel like the biggest enemy of caregivers is sleep deprivation because you just do not have the energy to deal with the emotional aspects of it and just the physical just doing, doing, doing.
LYDEN: Now, Amy has some help, but caring for someone with Alzheimer's can be simply staggering.
A. GOYER: I help my parents go to the bathroom, get their pajamas on, get up in the morning, brush their teeth, wash their faces, do all of their personal grooming, make sure they have their medications.
LYDEN: Amy's mom is at home, too, recovering from a stroke. But Amy says the Alzheimer's is the worst because of what is often described as the long goodbye.
A. GOYER: Over time, it's like he's being robbed of who he is. And my dad's probably the most optimistic person you'd ever know, and he still has that, which is wonderful for us. But there are times when he gets very cranky because he doesn't know what's going on. He'll ask the same question over and over and over again. And you have to just approach it as it's the first time he's asked the question because for him it is.
LYDEN: Given that your father has Alzheimer's, your grandmother had Alzheimer's, do you ever fear having Alzheimer's yourself?
A. GOYER: I absolutely do. I think about it all the time. But it's hard when I'm focusing on caring for my parents to think about that for myself. All I can do is anything that will prevent the onset of the disease. But I sure would like to have a lot more tools in my toolkit to fight it.
LYDEN: This is a disease that can last a really long time and cost a lot of money, so much money that the U.S. government is paying attention with new legislation.
In 2011, the National Alzheimer's Project Act was signed into law by President Obama. Currently, about $500 million per year goes to Alzheimer's research. The new law includes an additional $100 million towards treatment. That means care, research, medicine and diagnostic tools.
Dr. Dorene Rentz is a neuropsychologist and co-director of Harvard Medical School's Center for Alzheimer's Research and Treatment. She's been studying Alzheimer's patients for three decades. In 2005, the breakthrough was a discovery of something called amyloid plaque in the brains of patients with Alzheimer's. But not all patients with plaque go on to develop the disease.
DR. DORENE RENTZ: Unfortunately, we've actually come to discover that many older individuals who are still normal have these changes of amyloid plaque. And now, we're still beginning to understand that as well.
LYDEN: So you can detect this amyloid plaque, which is there if there is Alzheimer's, but might also be there even if there's not? You can't actually arrest it no matter what, right?
RENTZ: That's what we're on the threshold of being able to do. What we've discovered over the last eight years that we've had amyloid imaging is that this isotope is actually attaching itself to fibular forms of amyloid. We believe that an abundance of fibular amyloid may trigger the cascade into Alzheimer's disease, but we also know there are some people who can walk around with a head full of this fibular amyloid and still stay normal.
While we've been able to remove amyloid from the brain in patients who have Alzheimer's disease, we have not been able to change the memory loss and personality changes that come with the disease. So we haven't - it hasn't had a clinical effect.
LYDEN: In patients already diagnosed with Alzheimer's, even if the amyloid plaque is removed, the neurons may be too damaged for memory loss to be reversed. If diagnosed earlier, there may be some hope.
Dr. Rentz and a colleague at Harvard are launching a nationwide trial this fall to see what happens in the brains of people who have amyloid plaque but don't have Alzheimer's.
RENTZ: And what the object is, is to see if we can identify those normal individuals who don't have any changes yet, but may have amyloid in the brain. And we put them in a clinical trial and actually remove the amyloid from their brain, can we ever prevent them from getting symptoms at all? And that's where we're at right now.
LYDEN: Dr. Rentz, I would like you to tell me about the coming onslaught in terms of the exponential growth of this disease as baby boomers age.
RENTZ: Well, it's actually at epidemic proportions. One in 10 individuals over the age of 65 will actually get this disease. So it's increasing exponentially. And if we were actually able to slow down or prevent this disease, 43 percent of those 65-year-olds will never go on to get this disease. So that's very exciting if we can actually make a dent in trying to cure this disease.
LYDEN: I'm sure that you still see in your work and practice patients who come in who are exhibiting the symptoms of Alzheimer's who already have it. What do you tell them and their families?
RENTZ: Well, you know, I've been doing this for 30 years. And initially, when I used to tell people that they had Alzheimer's disease, they would just be devastated because there was absolutely nothing that we could do for them. But now, people are more educated. And many people are coming earlier to get tested because they're experiencing memory loss. They want to know, is this an aspect of maturity or aging? Or is the - are these signs of an early neurodegenerative process like Alzheimer's disease?
Sometimes the clinical profile indicates that they do have these very early changes, but I also give them a lot of hope because there are things that we can do for them. Because they're not yet fully devastated in this disease, you know, we can actually give them some FDA-approved medications that are good in keeping people stable for a while. And we help them to practice what we call optimal aging, and that is eat right. You know, a good Mediterranean diet, physical exercise, intellectual stimulation.
All of these actually are important as we age, but even more important if you're even in the early stages of Alzheimer's disease. Because one of the tendencies that people have when they actually begin to experience these symptoms is they just want to withdraw.
LYDEN: Amy Goyer doesn't let that happen. She's providing a happy, nurturing, outgoing environment, getting her parents as engaged as possible and having fun.
A. GOYER: If you don't have quality of life, what's the point? I'm not just trying to keep my parents alive. I'm trying to have a good life with them and live my life at the same time. Dad surprised me sometimes. He came up with this song I'd never heard him sing before. It was a fraternity song from college.
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A. GOYER: And he, you know, sang the whole thing while we were taking a walk one day and I had him sing it for mom. So there's still a lot of fun and a lot of surprises and just a lot of love. My parents are just very sweet individuals, and I'm very lucky in that way.
LYDEN: These will be years you will always remember.
A. GOYER: Yes. And I will have no regrets. And that's very important to me.
(SOUNDBITE OF ROBERT GOYER SINGING)
R. GOYER: Just for you, honey.
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LYDEN: It could be a parent, a neighbor, a husband, yourself. If you don't already know someone with Alzheimer's, you will. There will be 13.8 million people in the U.S. alone living with Alzheimer's in 40 years. And as we know, there's no cure, but that doesn't mean there isn't hope.
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