Finding your path forward with a familial Alzheimer’s genetic mutation

A Youngtimers Guide ・ Last Reviewed Jul 2, 2025

Even if you expected to test positive, the initial test results can be a shock. Once that shock wears off, you’ll begin to find your new normal–life with the knowledge that you carry the genetic mutation. 

Expect emotions to ebb and flow 

Although you might feel as though you’ve moved through the emotions associated with your genetic results, grief is a funny thing. 

Some members of the community report feeling delayed waves of sadness or anger. Sometimes, these emotions stay under the surface, but they show up in unexpected ways, such as physical symptoms, hypochondria, or fights with loved ones. 

Receiving a positive genetic test is a traumatic event for most people, and it’s not just getting the news that’s hard–the disease itself looms in the future. Expect that the processing of this reality may never be entirely complete.

One community member said, “Someone who could have connected the dots and helped me prepare for the acceptance process and understand where this sudden problem was stemming from would have helped immensely.”

Given the reality of your genetics, experiences might hit differently. The same member went on to explain, “The one thing I have noticed since testing positive is that life hits differently. I appreciate the time I have more and want to make the most of it, but at the same time, stress about maximizing the time I have left and avoidance or unusually strong reactions to anything negative. My way of putting it is: the highs are higher and the lows are lower than they were before I knew. “

A new, more decisive and joy-filled normal can emerge

Facing one’s mortality can change one’s perspective, and many members of the community report positive changes to their outlook on life, despite enduring devastating news. 

Some of the things community members have shared:

  • “I try to savor every day and live in the now. I play volleyball, go outside, eat yummy food; before, everything I did was in service of the “future.”

  • “I’m glad we know now and can do the things we know we want to do before symptoms occur. We just took a trip to Europe and my husband bought his dream car because we are doing all the fun things we can now and not waiting. Whether positive or negative for a mutation, life is short.”

  • “I don't postpone things (travels, for example) anymore, and I spend my time with my husband and my daughter, and I also enjoy ‘me time’ when I need it.

  • “Sometimes it helps me to make choices and prioritize. And sometimes it's to say, ‘I'm not going to do this. I don't have eternity. I'm not going to waste my time on that.’

  • “It also makes me incredibly grateful for the life that I have, and the time that I have. And all the joy and love and wealth in many ways that I have in it. 

  • “It puts a pressure on life to live it, and to make something of it, and to make it worthwhile, and to do the things that you want to do. “

Keeping it in perspective

Although the situation may feel urgent, it can help to take a deep breath and put things into perspective. A person carries this mutation from the day they’re born; the only difference is that we now know about it. 

Members of the community like to remind one another that carrying the mutation doesn’t mean an inevitable demise. As one community member said, “you could always get hit by a bus!” And there are a few seemingly miraculous examples of people known as “escapees” who have not developed the disease, decades after their anticipated age of onset. Learn more about escapees.

And for many of us, there’s hope. As of November 2024, there were 141 drugs being tested in clinical trials for the treatment of Alzheimer’s, and 2 drugs approved to treat Alzheimer’s disease There are scientists working round the clock to understand the disease, and there are increasing levels of optimism that we’re not far from meaningful change - due in no small part to the participation of many FAD gene carriers!


Community insights on genetic testing