As this story in today's Boston Globe points out, "A half-century ago, people with Down syndrome were seldom expected to live past age 12." Further:
For years, doctors have known about the genetic link between Alzheimer's and Down syndrome. Specialists say virtually all brain autopsies of adults with Down syndrome show lesions pointing to Alzheimer's. But as the life expectancy of people with Down syndrome has increased dramatically to 55 and older, state officials are realizing that they need to learn more. * * *Posted by Marcia Oddi at May 29, 2004 06:19 PMIn the 1970s and early 1980s, people with mental retardation were moved out of institutions and into private homes, Oxx said. As part of this effort to mainstream those with mental retardation, advocates also began pushing state agencies to focus more on a person's abilities and less on their conditions, she said. The agencies complied.
"There wasn't so much of an emphasis on the diagnosis. People didn't want labels as they moved into adulthood," Oxx said. "It didn't matter if you had Down syndrome. That became almost extraneous data."
But that data is now crucial, she said. Counselors working with people with Down syndrome need to spot early warning signs of Alzheimer's to ensure they receive proper treatment. Knowing that a certain segment of the population is extremely likely to develop Alzheimer's can help the state determine what kind of residential facilities or day programs might be needed. * * *
Not only will people with Down syndrome develop Alzheimer's sooner than others, but their symptoms can be different, said Dr. Florence Lai of McLean Hospital, who focuses on patients with Down syndrome and Alzheimer's disease. For example, seizures are much more common in people with Down syndrome and Alzheimer's, she said. Doctors, in general, also need more information, particularly because people with Down syndrome show other premature signs of aging, Lai said.
"Hearing loss, cervical and neck arthritis, menopause, a lot of things come very early," she said. "The more people know about what's going on with people with Down syndrome, the better off those people are going to be in their treatment."