When Jennifer Williamson, a genetic counselor in the Gertrude H. Sergievsky Center went to Oceanside, Long Island, this past spring to speak about genetics and Alzheimer's disease to high school students, she thought her talk was going to sail over their heads. "But they loved it," Ms. Williamson says. "It seemed like there were little researchers in some of them. They asked if we'd thought about environmental factors or unknown genes. With other students, you could tell personal questions about their grandparents were being asked."
Ms. Williamson's talk last spring was just one of many given by the staff and faculty of the Taub Institute for Research on Alzheimer's Disease and the Aging Brain, as part of the educational efforts of the Alzheimer's Disease Research Center at Columbia University. This center, funded by the National Institute on Aging for the past 13 years, has a mandate to routinely educate the general public, doctors, and scientists in the metropolitan area about the latest research that comes out of the center. Staff members also travel to the Dominican Republic, where families there participate in Columbia research.
"Our job is to digest the latest information and provide it in a simplified form to the community and clinical doctors," says Dr. Mary Sano, associate professor of clinical neuropsychology (in neurology and the Sergievsky Center) and the director of the Education and Information Transfer Core of the Alzheimer's Disease Research Center. The education core runs the outreach effort.
To inform the public, the education core sends Dr. Sano, Ms. Williamson and other researchers and clinicians into the community about two to five times a month to give talks at schools, senior centers, nursing homes, and hospital facilities. Each talk covers a different topic, such as Alzheimer's diagnosis, treatments, or genetics. Speakers also respond to audience questions. Dr. Richard Mayeux, the Gertrude H. Sergievsky Professor in Neurology, Psychiatry, and Epidemiology; Dr. Lawrence Honig, associate professor of clinical neurology; Dr. Karen Bell, associate clinical professor of neurology; and Dr. Christine Weber, education coordinator, also give talks. Dr. Hilary Schmidt, associate dean and assistant vice president for education research and evaluation, co-directs the education core.
This October, faculty and staff made their second educational trip to the Dominican Republic, where staff met with the families who participate in Dr. Mayeux's research about the genetics of Alzheimer's in Caribbean Hispanics. They also taught a continuing medical education course in the country about Alzheimer's disease to local physicians.
Inevitably, wherever the core staff goes, an audience member wants to know about the likelihood a child will get the disease if the parent has it.
"Having a first-degree relative increases the risk two to three times but everyone has a risk," Ms. Williamson says. "Many people perceive the genetics of Alzheimer's is clear cut and I think they're surprised when I say it involves many genetic and environmental factors. By the end of my talk, I hope they're not thinking in black and white."
The audiences also want to know about warning signs, things that may cause Alzheimer's, and alternative therapies. The core speakers address these topics in talks, in articles for the newsletter of the Alzheimer's Association (a voluntary health organization supporting Alzheimer's research and care), and on Web chats on Eldercare.com.
Based on audience member feedback, the core also has targeted some talks to address participant needs.
"We feel it is our obligation to tell the community what we and others internationally are finding so people better understand the condition," Dr. Honig says.
While there now are a number of effective treatments to help in Alzheimer's disease, none are curative. Often, much of the important information the core gives to caregivers is where to go for help. The Taub Center's Web site directs caregivers and patients to diagnosis facilities and also provides a link to the Alzheimer's Association, where caregivers can get information about support groups, legal issues, and other topics.
Even doctors need information about support for caregivers. "It's often daunting for general doctors when they diagnose a cognitive problem," Dr. Sano says, "because often they don't know where they can send the family for help. We alert them and their office staff to caregiver resources during our CME courses."
The time the core spends with Alzheimer's patients and their families also helps research. "Questions about pathological changes throughout the disease only can be answered through brain autopsies," Dr. Sano says. "Brains told us plaques and tangles are important and which parts of the brain are affected, and we can test ideas about drug treatments based on donated tissue. We tell elders why scientists need to do autopsies, dispel myths, and explain the benefits of the brain donation program."
The appeals have succeeded in increasing the number of people who donate tissue. The Alzheimer's Association is now making similar presentations to increase donations.
"We value the community and its support of our research efforts," Dr. Honig says, "because without that support we couldn't continue to make the progress we are making."