- Associated Press - Monday, February 2, 2015

CENTRE, Ala. (AP) - For a northeast Alabama woman and her extended family, losing keys or forgetting names is no laughing matter. In fact, she and her relatives watch with dread for signs that a disease that affects a startling 50 percent or more of her family may be lurking.

“You wonder every time you misplace something,” said Doris Crouse of Gaylesville. “You ask yourself, ‘Is this normal or is it beginning?’”

According to Crouse, researchers have discovered her genetics, as part of the Chastain family tree, mean there is a strong likelihood that her fears are founded.

“They are doing a study on the Chastain blood, because we have an extra Alzheimer’s gene,” she said. “They’re trying to find a cure and think it’s real possible it could be in our blood. They say we’re the only family in America who has this extra gene and there are only two other families in the world who do.”

It’s a remarkable assertion confirmed by Dr. Allan Levey, chair of the Department of Neurology at Emory University School of Medicine in Atlanta and director of Emory’s Alzheimer’s Disease Research Center.

“There is a horrible crisis with more and more people developing Alzheimer’s disease, because more people are aging and living longer,” he said. “It’s really a tsunami ahead of us with horrendous personal and family impact.”

Levey said the disease has a devastating societal impact and is a major threat to the global economy.

“Years ago, when people didn’t live past an average lifespan of 50 or 60 years, it wasn’t a problem,” he said. “The likelihood of Alzheimer’s starts doubling every year as people get older. It turns out 40 to 50 percent of those past the age of 85 have Alzheimers. More and people are living that long. Currently, over 5 million Americans are affected and that number will grow.

“Currently, there’s not a single treatment which is able to slow or prevent the disease,” said Levey. “It’s the only one of the major causes of death that has no known treatment to stop it.

“We think about Alzheimer’s as coming in two major forms,” Levey continued. “To have it younger than 60 is rare and occurs about 10 percent of the time. The other is when people 60 or older have it. Most of the progress in the field over the last several decades can be traced to understanding large families that have the young onset of Alzheimer’s. In those families, individuals get the disease in their 30s, 40s, 50s. In those families, the disease never skips generations and 50 percent of the children in those families are affected. Those rare families have led to the identification of three specific genes that cause Alzheimer’s. That has been the first big breakthrough.

“But those families account for less than 1 percent of all patients of Alzheimer’s disease,” he said. “Most people get the disease at an older age and we’ve learned the genes don’t cause it like in those rare families. That is what makes the Chastain family distinctive. I don’t know of any family like the Chastains who have the more typical form of late-onset Alzheimer’s disease and yet have a very strong genetic basis for it. Because there has been such huge progress that has resulted from studying the early-onset families, you could argue that this could be even more important, because the late onset is more typical.”

Because the three genes that typically cause the early-onset Alzheimer’s are not the cause of the late-onset disease in the Chastains, Levey and his extensive research team need to compare the specific genetic makeup of as many Chastain family members as possible.

Family members are scattered, but many live in Alabama, north Georgia and the Carolinas, an Emory spokeswoman said.

“The stories in the family are absolutely amazing,” said Levey. “We’ve been to family reunions with them and have gotten to know them in the last 20 years. One family member told me every single one of her father’s generation had been affected by Alzheimer’s. Even with strong odds, you’d expect half to be affected, but every single one had. There had been 12 siblings in that generation.

“We’ve been privileged to get to know some of the family members and they’re helping us to discover the cause,” he said. “You don’t know in advance which family members hold the key, so it’s important to get as many as possible. They understand not only how important it is to their own family, but maybe they hold the key to how Alzheimer’s affects the entire world. It’s really like trying to find a needle in a haystack.”


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