Taking action after testing positive for familial Alzheimer’s genetics

A Youngtimers Guide ・ Last Reviewed Jul 2, 2025

Upon testing positive for familial Alzheimer’s genetics, some people are motivated to make changes in their lives.

Here are some of the changes we’ve seen members make.

• Lifestyle changes. Many members of the community do what they can to delay symptom onset and improve longevity. This can include diet, exercise, sleep, mindfulness, and more. Learn more about lifestyle modifications that may delay Alzheimer’s disease. 

• Participating in Alzheimer’s research. For some, a desire to help find a cure was part of their motivation for getting tested. The FAD community is a highly valuable population for medical research, and members have been on the front lines of testing new therapies since the genetic causes of Alzheimer’s were first discovered. Learn more about Alzheimer’s research.

• Family planning. Knowing that we might pass FAD genetics can change how we approach family planning. One community member said, “I got my tubes tied because I don’t want to pass this down to children.” Some families may choose to proceed with having children as they had previously planned to. Some may choose to freeze eggs, or delay having children in order to participate in medical research. Some choose to adopt. Others may choose IVF with PGT (preimplantation genetic testing) to have their own biological children, while ensuring that these children do not carry the mutation. Learn more about egg freezing and IVF with PGT.

• Changing jobs, or even careers. Many members of the Youngtimers community who have tested positive for FAD genetics report feeling an increased urgency to spend their time on things that matter to them. Some want to make more of an impact. Others want to spend time doing things they love. Some choose less stressful jobs. Some change careers to work in the Alzheimer's space. Others choose to retire earlier than they’d planned to. And others decide they want to maximize their earning while they can. Most people spend a lot of their time working, and testing positive for FAD genetics might cause you to think hard about the way you spend that time.

• Dive into learning. For some people, understanding what to expect brings comfort. Others find that they can regain a sense of control over the situation by learning about the disease. The Youngtimers site is full of information about this specific disease and the challenges people in this community face. Learn about familial Alzheimer’s disease (FAD). 

• Pour your emotions into creative endeavors like art, writing, or music. After testing positive, many people find themselves diving back into creative hobbies they used to enjoy, which may have been pushed off their schedule in the hustle and bustle of daily adult life. One member described it perfectly, “Try to find a way to channel this energy. I've found that you can transform sadness and difficulty into something more beautiful.” 

• Find a neurologist. Alzheimer’s treatments and lifestyle interventions are rapidly developing, so finding a neurologist who is experienced with familial Alzheimer’s can help ensure that you are getting the latest and greatest information and therapies as they emerge.

Over time, members of the Youngtimers community experience fluctuations in their levels of motivation and interest towards taking action. That’s very normal. Life with this knowledge is a marathon, not a sprint.