Alzheimer's: A grim diagnosis, but hope for a cure

In parts one and two of our three-part series, we have been following Tony Schwarzwalder, who was diagnosed with Alzheimer's disease five years ago , and his wife, Cecile Javier. In our final installment, we look to the future of Alzheimer's -- the grim outlook for those who have it, the need for increased understanding and the hope science brings.

Tony Schwartzwalder and Cecile Javier installed a door alert system in case Schwartzwalder wanders from home.: Photo by Kristin McGrath Tony Schwartzwalder’s medical alert bracelet identifies him to strangers when he's disoriented. A door alert system notifies Cecile Javier if her husband opens the door when he wanders during the night.

"The first thing is you forget what happened in the most recent past," Javier said. "You’ll get to the point where you forget how to put on your clothes, how to feed yourself, how to take care of yourself and your bodily functions. Pretty soon you won’t remember how to eat with utensils so you do it with your fingers. And pretty soon, at some point, you’ll forget the person you’re married to, and it gets to that point of deterioration."

Her words of advice to those who are coping with the disease is to find others "who get it and understand what you’re going through."

Video: Javier's and Schwartzwalder's advice for those diagnosed.

A call for understanding

Nancy Dezan, executive director of the Alzheimer's Family Day Center, agreed that understanding is important for an often misunderstood disease.

“The biggest misconception is people think the person who has Alzheimer’s disease go off into la-la land and are happy all the time," Dezan said. "That could not be further from the truth.”

People who have the disease are often very aware of their situation, especially in the early stages of the disease. Dezan said many newly-diagnosed Alzheimer’s patients have a lot of anxiety.

“They worry about the burden on family and financial issues," she said. "It is not a disease where they don’t know what's going on all the time. There are times of great lucidity when people know things are really bad.”

Even though Alzheimer’s disease is becoming better understood, there are still a lot of misconceptions. In November of 1994, former President Ronald Reagan announced to the country that he was diagnosed with the disease. At the time, Reagan was one of the first high-profile people to come forward with the diagnosis.

In an open letter to the nation, Reagan said, “In the past, Nancy suffered from breast cancer, and I had my cancer surgeries. We found through our open disclosures, we were able to raise public awareness. We were happy that, as a result, many more people underwent testing.”

Despite Reagan’s letter and other efforts, many still do not recognize Alzheimer’s as a disease.

“I wish people would realize that Alzheimer’s disease is a disease,” said Dezan. “Its a very physical disease that causes physical changes in the brain. Its not a mental illness; it's not something people cause, and its not something people should be ashamed of.”

That shame, Dezan said, might delay diagnosis.

“So often, people are reluctant to get a diagnosis and are reluctant to get treatment,” she said.

Hope on the horizon

Despite the fact Alzheimer’s has no cure, researcher and George Mason University Professor of psychology Dr. Raja Parasuraman is hopeful.
 
“There’s a real sense of optimism among researchers that something good is going to come out fairly soon,” he said. “It’s a very devastating disease, but it’s not all gloom and doom.”

Dr. Raja Parasuraman, a George Mason University professor, is conducting a National Institutes of Health study involving early detection of Alzheimer's disease.: Photo by Kristin McGrathFor example, since Alzheimer’s was first described barely a century ago, the medical community has gone from the “strong myth” that the disease’s symptoms were just part of normal aging to “understanding it biologically and psychologically,” Parasuraman said.  And research, he said, is chipping away at the “dogma” that the regrowth of brain cells (neurogenesis) only happens in young brains.

“That’s a really exciting finding because neurogenesis is promoted by learning,” said Parasuraman. “Every time you engage in some new activity, it promotes the growth of new cells in the brain. The whole idea that we’re born with this brain, and it’s fixed, and it’s just deteriorating, is giving way to a much more dynamic idea that the brain is plastic, and if you don’t give it any nourishment, it’s going to deteriorate. But if you nourish it in terms of activities, you can even grow new cells at any age.”

This possibility is key for early detection, Parasuraman said. If a person is discovered to be on the path toward Alzheimer’s early enough, it might be possible to “alter that trajectory” with physical and mental stimulation to slow the process of brain cell death.

Working toward a cure

Recent studies have produced “tantalizing” findings to that end, Parasuraman said, findings that may be able to predict the risk for Alzheimer’s decades in advance. A chapter in his upcoming book will include a chapter on early childhood experience.

“This is kind of weird because, if you tell people that what you’re exposed to when you’re in school and during  your early adolescence may have an impact on something that happens 40 or 50 years later, there’s two responses,” he said. “The first is, ‘I’m not going to bother, it’s too far in the future.’ The second is, ‘What can I do?’”

For example, a study that appeared in the Journal of Neurology, Neurosurgery, and Psychiatry in 1996 found that those with even a few years of elementary school education in rural China had a lower prevalence of dementia than those who received no early education.

An ongoing longitudinal study by Dr. David Snowdon called the Nun Study has been evaluating 678 nuns (with an average age of 83 years) to see if there is a link between early-life experiences and the development of dementia. Its findings so far suggest that the richness of ideas and the complexity of thought shown in old school essays correlates to a decreased prevalence of Alzheimer’s.

Although the findings of these studies (and the dozens of clinical trials taking place for new Alzheimer’s treatment drugs) will be of no help to those who are currently suffering from the disease, Parasuraman is optimistic that there will be a cure in the “next couple decades.”

“In the 25, 30 years I’ve been doing this,” he said, “I’ve never been more hopeful than at this time."

These methods will be of little help for those already diagnosed with Alzheimer's disease, such as Schwartzwalder.  While Javier is well aware of the progression of the disease, they are busy filling time before they, as she puts it, "kick the bucket."

Video: Schwartzwalder says Alzheimer's is "my next challenge."

In the past two years, for example, the couple has traveled to Equador and Egypt (a trip they made with a caretaker from Alzheimer's Family Day Center). Schwartzwalder was  already an avid traveler before his diagnosis. He worked abroad for the United States Agency for International Development (USAID) and, after his retirement, continued his travels doing HIV/AIDS prevention work. Artwork and statues from around the world fill the couple's home in Arlington, Va.

“We’ll keep trying for other things," Javier said, "and just trying to make the most of each day as it comes.”