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Choosing Not to Know

Sophie Leggett watched her mother and her aunt struggle with early onset Alzheimer's disease, and although she has been tested to see whether she carries the presenilin 1 mutation linked to the disease in her family, Leggett doesn't want to know her results, writes Giulia Rhodes at the Guardian.

"I focus on the 50 percent chance that I haven't got it," Leggett tells Rhodes. "I know that my world would change totally if I came home one day and said to my family: 'I know I've got it.'" She adds that she does worry that her 15-year-old daughter might also have inherited the disease.

Susie Henley, a clinical and research psychologist at the Dementia Research Center at University College Hospital, London, tells the Guardian that coming to terms with the possibility of such a disease can be a source of anxiety. And that anxiety often means that people are on the look out for signs they're coming down with the disease, but miss indications that they are not.

Leggett, Rhodes says, is involved in the DIAN-TU trial, which is examining two drugs for people at risk of familial early onset dementia. "I wanted to do something for my family, but also for everyone," Leggett says. "I think: 'Well, Alzheimer's, you might get me, but I will do everything to get you first.'"