Learning of Risk of Alzheimer’s Seems to Do No Harm

A genetic test that can find an increased risk of Alzheimer’s disease does no psychological harm to people who take it, even if they test positive for a risky gene, a new study finds.

The results challenge views long held by the medical establishment, which has discouraged people from being tested, arguing that the test is not definitive, that it may needlessly frighten people into thinking a terrible disease is hanging over them and that testing is pointless anyway because there is no way to cure or prevent the dementia caused by Alzheimer’s.

“There has been this extraordinary worry that disclosing risk was going to devastate people,” said Dr. Robert C. Green, a professor of neurology, genetics and epidemiology at Boston University, and the lead author of the study, which is being published on Thursday in The New England Journal of Medicine. “This has upended those assumptions.”

The idea behind the study was to treat information like a drug, something with risks and benefits that could be measured, Dr. Green said.

Dr. Green led a large team in the study, called Reveal, in which 162 adults who had a close relative with Alzheimer’s could find out if they had the genes that increased their risk for the disease. All participants had genetic testing, but 51, picked at random, were not told the results. The other 111 were told, and the two groups were compared.

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The Psychological Toll of Early Onset Alzheimer's Disease

Lisa Carbo knew something was wrong. The former registered nurse from Metairie, La., began experiencing difficulty in remembering how to perform various functions at her job. Multitasking became harder. Eventually she was written up for poor performance, prompting her to seek medical help.

Carbo was diagnosed with early onset Alzheimer's disease in November 2007, at the age of 53.

Before her Alzheimer's diagnosis, Carbo had plans for her golden years. "I hoped to semi-retire, spend the rest of [my] life with someone, continue to be productive, travel," she said. "I love animals, I had planned to do a lot more volunteering with animal shelters."

Her diagnosis changed everything: She lost her job and her boyfriend left her. "All those hopes and dreams are smashed. They're all gone. It's like everything that you planned on for your life is gone."

Fortunately for Carbo, she was able to find help to deal with the depression brought about by her diagnosis. She began taking antidepressants and started seeing a therapist.

READ MORE @ ABC NEWS