Families, caregivers and researchers fight Alzheimer's on all fronts

The first part of our three-part series on Alzheimer's covered the growing threat of an incurable disease from the perspectives of a researcher, a professional caregiver and a couple dealing with the disease first-hand. In our second installment, we explore how they are fighting the disease on all fronts through innovative care, research and domestic activities.

When Tony Schwartzwalder, 70, was diagnosed with Alzheimer's disease five years ago, he and his wife, Cecile Javier, 58, sought helpful resources and sought to reverse the disease. When they realized resources were limited, and they couldn’t go backwards, they tried to find ways to cope and find a cure. 

Research says that word games and puzzles can provide mental exercise for those with Alzheimer's disease. Tony Schwartzwalder and Cecile Javier enjoy Scrabble and Mahjong.: Photo by Kristin McGrath

Schwartzwalder remembers how he felt when he found out he had Alzheimer's disease. 

“It was very scary," he said. "And I said, 'I’ve got to fight it.' That’s all there is to it."   

A "huge emotional toll"

There is a lot of fear and anxiety when someone is diagnosed, said Nancy Dezan, executive director of the Alzheimer's Family Day Center (AFDC) in Fairfax, Va.

“Someone described getting Alzheimer’s disease to me by saying, you have to get used to be wrong all the time," she said. "The person who has Alzheimer’s feels very vulnerable. They second guess themselves all the time.”   

AFDC provides support for patients and their families as well as much-needed practical knowledge. With a mission to “enhance the well-being and quality of life of each person during the course of an Alzheimer's-type illness, through therapeutic and innovative approaches," the center promises that "as families are also affected by the illness, we promote caregiver wellness through education and support."

Caring for someone with Alzheimer’s disease is a full-time job, Dezan said.

“We have individuals who need to be watched all the time, who need a lot of physical care," she said.  "People who have Alzheimer’s don’t sleep through the night, so their family members are worried about their safety.”

Often, she added, the families of Alzheimer’s patients feel like they do not have the resources they need to care for their loved ones, and they also feel bad about asking for help.

“People have the guilt that they cannot provide the care the way they would like to," she said. "There is a huge emotional toll.”

An upbeat approach to therapy

For caregivers, facilities like AFDC means being able to carry out their daily activities without constantly worrying about their loved ones.

For the center's participants, it means a day full of activity.

AFDC provides a host of services for people in the mid to late stages of Alzheimer’s disease. It has programs five days a week from 7:30 a.m. to 5:30 p.m., as well as medical monitoring, therapeutic activities, and entertainment and socialization opportunities. The center divides its services into four areas of service: adult day health care, training for caregivers, support groups and preventative activities. It also provides nutritious meals and snacks during the day.

The center regularly hosts a variety of musical performers. Music can be a connection to fond memories for the patients at AFDC. Often times hearing the old songs will spark a memory that would otherwise be left forgotten.

“Music is global," Dezan said. "It's a fun experience that helps people relate to each other and it relieves agitation. We have people in our center who are unable to talk and carry on a conversation, but can still sing all the words to some of the old songs.”

Video: Participants at the Alzheimer's Family Day Center sing and dance to old favorites.

The physical activity that comes from dancing is also good for brain function, according to Dezan.

“We know that physical activity is good for cognitive function," she said. "Overall, the music and movement is a wonderful experience for them.”

Researcher plans early attack

Dr. Raja Parasuraman is a university professor of psychology and the director of the Human Factors and Applied Cognition program at George Mason University, whose current research focuses on attacking Alzheimer’s on a key front — early detection.

Parasuraman is leading a five-year study funded by the National Institutes of Health called "Apolipoprotein, Attention and Alzheimer's disease.” Previous research suggests Alzheimer’s begins to take root years before diagnosis. If tests could be developed to diagnose the illness long before the symptoms begin to show, then patients could begin taking measures, including as mental and physical exercise or medicine, to stave off the disease’s effects. (The FDA has approved several drugs, such as Arisept, that can drastically delay the progression of the disease.)

The study is rooted in the genetics of Alzheimer’s. There are two types of the disease, and both have genetic links. Early-onset Alzheimer’s, which develops in people between 30 and 60 years of age, strikes the young through inherited genetic mutations. Although inheriting a mutated gene almost always leads to the disease, early-onset Alzheimer’s is rare, affecting only about 5 percent of total cases, according to the National Institute on Aging.

Parasuraman’s NIH study, however, focuses on the more common, but less predictable, form of the disease—late-onset Alzheimer’s. Although late-onset cannot be reliably linked to a single gene, there seems to be an increased risk related to the apolipoprotein E (APOE) gene. It comes in several forms (alleles), and those with one of the forms, the E4 allele, have an increased chance of developing the disease (about 40 percent of those with late-onset Alzheimer’s have the gene, according to the National Institute on Aging).

Parasuraman’s study, in its third year, has been annually testing healthy people between 18 and 70  years of age who have the gene. Tests will include computerized cognitive tasks and measures of brain structure and function using MRI (for exmple, it requires a subject to concentrate on a point in the center of a screen while identifying letters that appear on the sides of the screen).

By analyzing younger groups' performances on these tests, Parasuraman hopes to determine patterns that could reliably predict Alzheimer’s disease.

“If, for example, you could diagnose Alzheimer’s or have some sort of series of tests that says that there’s a greater likelihood of this person developing Alzheimer’s, you could push that age [of diagnosis] back from say the sixties into the fifties,” Parasuraman said. “What that will do is dramatically reduce the incidence of Alzheimer’s disease. There’s a lot of research in new kinds of drugs, new treatment procedures. You could start applying them at an earlier age.”

On the home front, another battle

Schwartzwalder and Javier are doing their part to attack the disease as well. They are taking part in the second clinical trial at Georgetown University Hospital in Washington, D.C. Schwartzwalder is on a study drug, which scientists are testing to see what effects it may have on the illness. 

Because mental stimulation is important in slowing Alzheimer's effects, the couple, Javier said, plays "games we played as children."

"Word games, puzzles, we’ve gone back to that," she said. "Trivial Pursuit would be too sophisticated, but there are other games, just little games that you play in the car, like looking at car tags and trying to figure out what those plates mean. A lot of word games, like Scrabble,...like Mahjong, that’s a really good game.

"If you know how to play Mahjong," Schwartzwalder added, "you’re a good friend of Cecile’s. She loves the game."

Three days out of the week, Schwartzwalder also participates in activities at AFDC. The center fulfills the needed socializing and friendly companionship aspect in Schwartzwalder’s life. The couple started attending the Mind and Body workshop, for those in the early stages and their family members to learn coping mechanisms to help deal with the illness while engaging in intellectual discussions.

“Just the other day, we had people, mostly men, and somebody had brought pictures of old cars," Schwartzwalder said. "And we would be talking about, ‘Oh I remember this car,’" Schwartzwalder said. “They can go any way…The point is remembering things that are important to them.” 

Read our final installment next week to learn about the grim realities of Alzheimer's disease and the hope research might bring.