Alzheimer’s disease is inexorably robbing Phyllis Blais of her memory and mind. But the 79-year-old grandmother has decided to fight back.
Each week, she tests wits with a group of people like her who’ve received a diagnosis of early-stage Alzheimer’s. They come to the Long Island Alzheimer’s Foundation to work puzzles, play word games and compare memories of current events. The hope is that this mental activity will help short-circuit the disease and keep brain wiring intact as long as possible.
Blais and her classmates, whose ages range from the mid-50s to the 90s, listen to clues and questions and then vie to be the first with the right answer. And those answers come in rapid fire. Surrounded by others with fading memories, no one feels self-conscious.
So far, there's no proof that mental exercises can stave off Alzheimer’s, but growing evidence suggests that it might be possible to slow down the disease’s impact.
Blais thinks the classes are making a difference, and that makes her all the more determined. “I’m not completely gone,” she says. “I’m gonna fight it and make sure I don’t get that bad.”
“There is a changing landscape when it comes to Alzheimer’s,” says Dr. Peter Reed, senior director of programs at the national office of the Alzheimer’s Association. “The baby boomers are more vocal and more interested in playing a greater role in their experience. Those in the early stages have a lot more remaining ability and capacity to be involved in their own decision making.”
Patients with early-stage Alzheimer’s account for about half of the estimated 5.1 million Americans afflicted with the disease. Increasingly, Reed says, Alzheimer’s is being diagnosed early — when symptoms are subtle and patients still have the promise of several years of relatively normal life.
“People in the early stages,” he says, “are not so much dying from the disease as they are very much living with it.”
Bracing for a decline
Seated in a semicircle, Blais and 10 others listen intently as Alana Rosenstein asks them to supply the word that will finish the two phrases: “Buster ____ and ____ v. the Board of Education.”
An elderly man says, “Brown.” And the answer becomes a springboard for a history discussion. “What was Brown v. the Board of Education about?” asks Rosenstein, director of Early Stage Programs at the Long Island Alzheimer’s Foundation.
Moving on to the next word game, Rosenstein gives a clue to prompt for a word that can be made from the letters in “conglomerate”: “When people get married, there’s a bride and a … ”
“Groom!” several voices call out. Blais playfully elbows the man next to her. “Hopefully,” she says with a sly smile.
A few seats away, Gertrude Rothenberg carefully scrawls each answer down so she’ll be able to test her daughter with today’s brain teasers.
At a very early stage of Alzheimer’s, Rothenberg, 84, shows a face of the disease at odds with the public perception. The only change in her life since her diagnosis a year ago is a bit more attention from her adult children. Rothenberg still lives on her own. She drives. She does her own shopping, pays her own bills and volunteers at a hospital near her Mineola, N.Y., home.
Dr. Ronald Petersen isn’t surprised at how normal Rothenberg’s life is post-diagnosis. People in the early stages of Alzheimer’s can function at a very high level, says Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center. “They may still be driving and handling their own daily activities,” he says. “But there needs to be frequent contact by someone who knows them well — family members and the like.”
The extra scrutiny is needed so that any decline will be spotted quickly, he adds.
Rothenberg’s diagnosis did bring a prescription for the medications Aricept and Namenda. Aricept works by boosting the availability of a neurotransmitter, acetylcholine, which sharpens signaling in the brain. Namenda helps by blocking a different neurotransmitter — glutamate — which can be toxic to brain cells.
Studies have shown that while these medications don’t stop or slow the disease, they can tune up the brain, improving memory and helping Alzheimer’s patients think more clearly. The drugs help a deteriorating brain much in the same way that high-octane gas boosts the performance of an old car engine. The gas doesn’t fix the problems with the engine, but it can make it run more efficiently.
The diagnosis also provided the impetus for Rothenberg to look into the cognitive-stimulation class. It’s part of her plan to keep her independence as long as possible.
Simple acts, not-so-simple science
Until recently, doctors assumed there wasn’t much to be done once a person was diagnosed with Alzheimer’s. Patients were sent home with kind words, drugs that had a mild impact on symptoms and perhaps some advice on how to deal with the inescapable changes in their brains and the inevitable changes in their lives.
Take, for example, the studies in mice engineered to carry the human gene for Alzheimer’s. One, published earlier this year in the Journal of Neuroscience, showed that the simple act of learning could have a profound impact on the buildup of the distorted proteins that cause memory loss in both humans and mice afflicted with the disease. Researchers found that mice that had periodically been forced to learn to navigate a maze ended up with fewer plaques and tangles of protein than intellectually idle ones.
“I think you need to look at the mouse studies with a cautious optimism,” Petersen says. “I think it’s probably a modest effect.”
Studies in humans have also suggested that increased mental activity might protect the brain. One study, for example, followed more than 800 Catholic nuns, priests and brothers for four years. Ultimately, researchers determined that the most mentally active people were the least likely to develop the disease.
This doesn’t necessarily mean that the mental activity prevents Alzheimer’s. It’s always possible that the people with the healthiest brains were able to stay more mentally active. Still, experts say, the research does suggest that mental activity might help slow the symptoms.
“In general, I think the ‘use it or lose it’ admonishment is true,” says Dr. Jeffrey Cummings, director of the Alzheimer’s Disease Center at the University of California, Los Angeles.
But mental stimulation isn’t the only factor that’s been found to have an impact on Alzheimer’s. Studies have found that people with active social networks are less likely to develop the disease. In a 2006 study, researchers examined the brains of people who had recently died for the characteristic plaques and tangles of distorted protein. The researchers also had data on cognitive symptoms and how sociable people had been during their lives. What the researchers found was surprising: Even among those with extensive plaques and tangles, Alzheimer’s symptoms were less severe if people had many friends.
So, this makes the mental stimulation class a twofer because it also gives seniors more of a social life.
Experts suggest another lifestyle change that may help stave off symptoms: physical exercise. Both mouse and human studies show that physical exercise may slow the disease, says Brian Christie, an associate professor in the division of medical sciences at the University of British Columbia in Victoria.
Christie’s research on Alzheimer’s mice has shown that regular workouts on an exercise wheel block the buildup of plaques and tangles. He and others suspect that exercise works by increasing the flow of blood, nutrients and other substances that improve brain-cell survival. “So exercising is like keeping the garden watered,” Christie says.
The mouse research has been backed up by studies that followed healthy seniors.
“There is a very powerful dataset on exercise,” says Cummings. “One large study showed that exercising 30 minutes three times a week diminished the risk of developing Alzheimer’s by 50 percent.”
This still isn’t proof. There’s a difference, experts say, between showing that people who exercise are less likely to develop Alzheimer’s and showing that exercise actually slowed mental decline in those who already have the disease.
Patients like Rothenberg aren’t waiting for the definitive studies, though.
“I’m doing whatever I can do, medication-wise, doctor-wise, health-wise,” she says. “I walk because I know it’s good for you. I do my exercises in the morning. I try to stay fit.”
Byways in the brain
Other researchers are looking for strategies that might allow people with Alzheimer’s to live independently for longer by rewiring the brain to circumvent areas damaged by the disease. It’s like choosing a side road when a major freeway is blocked.
As it turns out, there are different types of memory, explains David Loewenstein, a professor of psychiatry and behavioral sciences at the University of Miami School of Medicine.
Information stored in episodic memory is like the narrative of a short story. This kind of memory depends on the hippocampus, a part of the brain hit hardest by Alzheimer’s. The brain regions involved in another kind of memory — procedural memory — are less affected by the disease. Procedural memory is what allows us to learn a foreign language or to ride a bicycle.
“You don’t have to think about it. It becomes automatic,” explains Loewenstein, who is also director of research and neuropsychology at the Wein Center at the Mount Sinai Medical Center in Miami.
In a pilot study, Loewenstein and his colleagues showed that you could teach Alzheimer’s patients skills that capitalize on procedural memory, bypassing brain regions affected by the disease. The Miami researchers are now working on a larger study funded by the National Institutes of Health.
One example of a way to use procedural memory is by adding up the change received from a store clerk, Loewenstein explains. Normally a person would try to do the math in her head, but that can be difficult for someone with Alzheimer’s. There’s an easier way, Loewenstein says. If you get change from a $20 bill and count the bills you receive back to yourself, making sure it adds up to the original $20, you only have to remember how much money you gave the clerk.
Loewenstein points to another example of using a side road in the brain to access information. People with Alzheimer’s often have problems remembering names, he says. You teach them to associate the name with a facial feature that begins with the same first letter as the name, and it can make a huge difference. “So, if you met me you might say to yourself, this is David and he has dimples,” Loewenstein explains. “Then the next time you met me you’d say, ‘There’s the guy with the dimples. That’s David.’”
If this kind of training kept patients functional a year longer, the impact on people and the health-care system would be tremendous, Loewenstein says.
The effects of mental stimulation are obvious to Phyllis Blais — and her family.
Blais is happy and alert when she comes back home, says her daughter, Susan Cuoccio. “She always looks forward to going there,” says Cuoccio, 49. “And when she comes back, there’s a real excitement, a spark.”
Blais will bring home word puzzles and sometimes mentions a particularly engaging speaker. “I’ll ask her about it to see how much she retains,” Cuoccio says. “I’m often surprised. She remembers a lot.”
Linda Carroll is a health and science writer living in New Jersey. Her work has appeared in The New York Times, Newsday, Health magazine and SmartMoney.