Risks of genetic testing for familial Alzheimer’s disease
A Youngtimers Guide ・ Last Reviewed July 2, 2025
The decision to seek genetic testing for familial Alzheimer’s disease (FAD) isn’t a simple one. There are drawbacks to consider before pursuing genetic testing.
Emotional burden
One community member says, “It was devastating to hear the news. It was awful.”
Even for those who are absolutely certain they want to know their genetic status, learning that one has tested positive for a genetic mutation is rough.
One study¹ found that on average, people who find out they carry an FAD genetic mutation experience increased depression and anxiety in the 3 months following testing. For many, depression and anxiety levels return to normal (or what the researchers call “baseline”) one year after testing. For some people, however, the weight of the news never seems to subside.
So far, no studies have been published that follow the long-term psychological impact of genetic testing. More study is needed to understand the emotional impact of knowing genetic status over multiple years.
For some people, finding out their results (and knowing with certainty that they face a disease without a known cure) can be an enormous emotional burden. Within our community, there have been reports of suicidal behavior and ideation following positive genetic testing results.
If a person has dealt with depression, is facing pressure to undergo testing, or has suicidal thoughts about potential genetic results, genetic testing may not be suitable for them. Before testing, it's crucial to discuss these issues thoroughly with a mental health professional or genetic counselor.
Stigma and discrimination
There is some risk for disease stigmatization or discrimination if you carry an FAD genetic mutation. People may worry about others’ negative attitudes towards Alzheimer’s disease. They may worry about whether their genetic result might make family members or friends treat them differently. Others worry about possible discrimination from employers, landlords, or health insurance.
Whether or not a person encounters these things, knowing one’s genetic status can make a person hyper-aware of the risk.
Talking with others about their genetic situation may also reveal information about a person’s siblings or other family members, exposing those people to the same risks.
For these reasons, many people choose to keep their result private, which can add to their emotional burden.
Survivor’s guilt
Although finding out you don’t carry an FAD genetic mutation can be a tremendous relief, people who receive this news may experience survivor’s guilt. They feel guilty that they don’t carry the genetic mutation when other family members do. Many people with survivor’s guilt eventually find ways to funnel their emotions into something positive such as advocating for their community.
Sources
¹ Paulsen, Jane S et al. “A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.” Progress in neurobiology vol. 110 (2013): 2-28. doi:10.1016/j.pneurobio.2013.08.003 Link