Benefits of genetic testing for familial Alzheimer’s disease
A Youngtimers Guide ・ Last Reviewed July 2, 2025There are many reasons someone who is at risk of carrying a familial Alzheimer’s disease (FAD) genetic mutation might seek genetic testing.
Making informed life decisions
One of the primary reasons people at risk of FAD decide to undergo genetic testing is because the results can be critical to making informed decisions about their life.
Knowing your genetic status could be helpful for:
Family planning
Career choices
Deciding when to retire
Diet and exercise choices
Financial choices, such as whether to get life insurance or long term care insurance
Considering preferences and preparations for care
Deciding to join a research study
Some people want to know whether they carry an FAD mutation so they can do everything possible to prevent or delay the disease. Others learn their genetic status to qualify for participation in Alzheimer’s research, which may unlock opportunities in testing cutting-edge therapies.
For some people, living with uncertainty about whether or not they carry an FAD mutation is a heavy burden. For them, the results (whether positive or negative) serve as a relief, eliminating the uncertainty.
Some members of the Youngtimers community who have chosen to learn their genetic status report that knowing their status gives them clarity and essential knowledge to make more informed decisions about their future.
Does genetic testing unlock treatment options?
Until recently, there were no disease-modifying treatments available for Alzheimer’s disease. But in 2023, the FDA approved Leqembi® (lecanemab). This drug removes amyloid plaques, and in some cases slows disease progression. Leqembi is approved only for people with early-stage Alzheimer’s disease (mild cognitive impairment or mild dementia) who have biomarker evidence of amyloid pathology. The drug is not approved for those without amyloid buildup.
Knowing that a person carries an FAD genetic mutation can prompt a neurologist to monitor a person’s brain for amyloid. Researchers suspect that the earlier amyloid is treated, the more effective treatment will be. By monitoring for amyloid buildup in the brain, they can start treatment before symptoms arise.
Genetic testing may not be required for this monitoring; however, knowing a person is at risk of FAD could give a neurologist enough reason to begin this monitoring.
Drug trials are underway for similar treatments. Researchers are working to maximize effectiveness, improve access, determine the best time to start treatment, and learn whether preventing amyloid buildup can also prevent disease. People with FAD genetics are good candidates for these studies.