Adult children of people with Alzheimer’s disease were satisfied and unharmed by the experience of genetic risk assessment, even when results suggested they might be at risk, according to a new study presented at the first Alzheimer’s Association’s International Conference on the Prevention of Dementia.
The study evaluated the psychological and behavioral impact of genetic risk assessment, specifically for one form of the Apolipoprotein E (APOE) gene, known as ApoE4, a well known risk marker for Alzheimer’s disease. After one year, participants in the study who were told they were either positive or negative for ApoE4, or who did not receive disclosure, had no significant difference in tests of depression and anxiety.
“There has been concern that genetic testing for Alzheimer’s disease would lead to misunderstandings, and cause depression and discrimination,” said William Thies, Ph.D., Alzheimer’s Association vice president for Medical & Scientific Affairs. “This study suggests that, with appropriate and accurate communication, genetic risk assessment doesn’t have to be a fear-filled process for people.”
According to the researchers, the REVEAL study (Risk Evaluation and Education for Alzheimer’s disease) is the first randomized trial to examine the impact of providing risk assessment, including APOE gene marker disclosure, for Alzheimer’s disease.
Scientists led by Robert C. Green, M.D., M.P.H , of Boston University School of Medicine, randomized 162 study participants from Boston into two groups; one received assessment based on age, family history, gender and disclosed APOE genotype, the other received assessment based only on age, family history and gender.
After one year, there were no significant differences among the groups (ApoE4 positive, ApoE4 negative, or no disclosure) on the Center for Epidemiological Studies–Depression Scale and Beck Anxiety Inventory. Overall, 95 percent of participants reported that they would choose risk assessment again, and 82 percent would recommend risk assessment to family or friends.
“As new treatments are developed to delay the onset of Alzheimer’s, it is going to be critical to identify those at greatest risk,” Green said. “At the same time, it will be very important that genetic risk assessment is done carefully and communicated accurately so individuals feel empowered by the results and are able to maintain a positive outlook and a good quality of life.”
Those in the study who tested positive for ApoE4 and were alerted to their genetic status were 5.8 times more likely to have altered their long-term care insurance than individuals who did not receive genotype disclosure.
“The study suggests that people who are armed with useful information about their possible future healthcare needs will take steps to protect themselves financially,” Green said.