Confronting Alzheimer's

To increase public awareness, the Alzheimer's Association has been recruiting celebrities who have personal experience with the disease. "Frasier" star David Hyde Pierce, 48, signed up because both his grandfather and father had Alzheimer's. When his family heard his father's diagnosis, they were haunted by the fate of his grandfather. The last time Pierce saw him, the old man's arms were strapped to the sides of his wheelchair. When Pierce's father died of pneumonia before the disease had progressed that far, the family was thankful. "Having seen my grandfather go the full route of the disease, we knew Dad was lucky to have been spared that," Pierce says.

Other activists are targeting lawmakers. Julie Baeza, 48, of Sterling, Ill., helps her father, Otto Null, 75, care for her mother, Margaret, 69, who has Alzheimer's. She visits her mother every day, even though she works full time for the city of Sterling's economic-development corps and has two high-school-age sons, including one with autism. "It's a very, very sad disease," Baeza says. "My mom was the memory of all of us." Now she is "this very old person who just sits there." Baeza worries that she, too, may someday suffer her mother's fate. "That's part of why I decided to start contacting our legislators," she says. She's trying to get support for two bills making their way through Congress: the Alzheimer's Breakthrough Act of 2007 and the Alzheimer's Family Assistance Act of 2007. The first bill would double funding for Alzheimer's research at the National Institutes of Health to $1.3 billion from the current $642.7 million. The Family Assistance Act would provide tax credits for caregivers. "This legislation is so important," she says. "It's so expensive to the caregivers to keep these families at home." Home health aides can cost more than $20 an hour, and that's on top of special equipment like wheelchairs or adjustable beds.

For activists, the ultimate goal is to uncover the cause of Alzheimer's and prevent it. A century after the disease was first described, scientists are still trying to fully understand what causes the two hallmarks of an Alzheimer's brain—gummy brown plaques between neurons and tangles that look like bundles of tiny ropes inside cells. Drugs now available to treat Alzheimer's provide only modest, temporary relief. Researchers are currently pursuing new treatments intended to prevent formation of A-beta (the main constituent of plaques) or remove it from the brain. If they work, these drugs might be able to slow the course of the disease. (Research on several of these experimental compounds will be presented this week at the Alzheimer's Association conference in Washington.) Scientists are also looking for ways to detect the disease early in order to start treatment sooner. But at the moment, the best advice for preventing dementia is to eat a heart-healthy diet and stay mentally and physically active. Unfortunately, obesity rates are soaring—an ominous sign. "The more unhealthy things we do for our heart, the higher risk we have for both heart disease and brain disease," says Dr. Samuel Gandy, director of the Farber Institute for Neurosciences at Thomas Jefferson University in Philadelphia.

For caregivers, the most effective therapy is an ancient one. "Be patient," says Mashy Modjdehi, 52, of Plano, Texas, who is caring for her 85-year-old mother. Maliheh Shirvanya, Modjdehi's mother, was diagnosed with Alzheimer's more than five years ago, when she still lived in Iran. Modjdehi, a U.S. citizen, brought her to this country to get better treatment. Her mother has a green card but can't become a citizen for two years. "I don't think she's going to make it," Modjdehi says. Shirvanya needs diapers and cannot feed herself. She takes medication to stop hallucinations and is often so anxious that she paces incessantly. Most days, she doesn't recognize her daughter. But Modjdehi isn't deterred by these obstacles. "When we were kids, they cared for us," she says. "Now it's our turn." That kind of love is not just a memory.

With Anne Underwood

© 2007