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Sandwich Generation
Early-onset familial Alzheimer's disease is rare but perhaps more devastating for someone like Stacy Dupery, who sees her mother's decline nearly every day."I may be the same way in 15 years," said Dopey, 32. Even without that burden, Dupery carries the onerous task of caring for her 52-year-old mother.
Known as the "sandwich generation", an increasing number of grown children such as Dupery find themselves caught in the middle of caring for ailing parents and tending to their own families or careers. "We are seeing younger caregivers, but Stacy's situation is really pretty unique," said Paul Harrington, program director for the Alzheimer's Association, Arizona chapter. "It's pretty unique, and it's pretty challenging, too." The association provides services for the 45 000 families in the Valley affected by Alzheimer's.
As more is known about Alzheimer's, more patients are being diagnosed at an earlier age. Early stages of the disease are characterized by memory and language difficulties. In advanced stages, victims become bedridden, incontinent and eventually can't even swallow as the brain shuts down. About 5 percent ...
... of victims nationwide develop the disease in their late 40s or early 50s and are classified as having early-onset Alzheimer's. About 10 percent of all cases surface in people younger than 65; up to 47 percent are diagnosed by the age of 85. Sometimes the disease is never diagnosed but suspected by surviving family or confirmed by autopsy.
While 4 million Americans have the disease, the number is expected to skyrocket to 14 million by the middle of this century. "When someone has Alzheimer's, it doesn't stop at mild forgetfulness, " said Dr. Richard Catelli, a neurologist at the Mayo Clinic Scottsdale. "It continues on until it announces itself." In younger patients, doctors generally run tests to rule out other brain disorders, such as tumors, strokes, cancer, infections or diabetes. "The more atypical a case, either by age or something else, the more tests we run," Catelli explained. Doctors are swayed by a family history of Alzheimer's disease but are careful not to misdiagnose the disease, because there is no cure for it.
Scientists have identified three genes associated with early-onset familial Alzheimer's. But there's only one commercial test available to determine whether someone carries one of the genes. That means that even if someone tests negative for one gene, it doesn't rule out the possibility that he or she may have one of the other two.
In individuals with no known family history of Alzheimer's, there is still a risk of developing the disease. There are also three genes associated with so-called "late-onset" Alzheimer's, but only one has been identified precisely, and it is the only one for which there is a commercial test. The risk of developing Alzheimer's in those cases depends on whether an individual receives one or two copies of the faulty gene. Having only one copy cuts an individual's risk by about half. "In the case of familial early-onset Alzheimer's, because it can strike in the 40s and 50s, it's understandable that people would want to know if they're carrying the gene so they can choose whether they want to have children or not and possibly pass along the disease," Catelli said.
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