Testing negative for a familial Alzheimer’s genetic mutation
Youngtimers Guide ・ Last Reviewed: July 2, 2025This guide is for those who have learned that they (or a loved one) do not carry a genetic mutation for familial Alzheimer’s disease (FAD).
For many, receiving the results from a genetic test represents the end of one journey and the beginning of another. The decision about whether to test may have cast a cloud over your future plans before, but that’s now behind you.
Now, you’re at the start of a new journey - living with the knowledge that you will not develop FAD. That’s life-changing news. Relief, gratitude, and a sense of freedom often accompany this result. But for many, it also brings complicated emotions: survivor’s guilt, shifts in family dynamics, and a reimagined sense of self.
We have spoken with members of the Youngtimers community who tested negative for FAD genetics.
In this guide, we share the themes of those conversations and insights to help you navigate this new chapter.
Embracing the relief
Many people dream of hearing these words: “Genetic testing did not detect a mutation for FAD.” And for you, that day came—you tested negative!
Members of the Youngtimers community often describe the moment as transformative. One person said, “The grass looked greener, the sky looked bluer.”
Another shared, “It felt like a honeymoon phase of my life... like I had been given a second chance. I even still celebrate that day as a second birthday.”
Years of worry, lifted
For many, anxiety around developing FAD begins early in life. When the results finally arrive and show no mutation, the release can be overwhelming.
One community member recalled, “I started crying and the genetic counselor was actually surprised 'cause she was like, I didn't think you would get this emotional about it. You seem so matter of fact and steady. And I was like, are you kidding me? I've been thinking about this since I was 18 years old. I'm in my mid thirties, like, how can I not cry!?”
Immediate consideration for others
A common theme among those who test negative is the immediate shift in concern toward family.
One person was convinced that she already had symptoms of Alzheimer’s, so upon hearing her negative test result, her initial reaction was shock. But joy flooded in when she was reminded that her negative test meant that her children were not at risk.
One told us that her immediate feeling was relief because for her, a negative test result meant that she would be able to take care of her brothers if they tested positive.
Another woman said, “I use the analogy of going from offense to defense. Rather than working to protect myself, it suddenly shifted to ‘now, how can I help other people?’”
Challenges that can follow a negative test result
While relief is often the first response, it’s rarely the only one. Complex emotions can emerge.
One member of our community reflected, “There was a little while of feeling pretty happy. Then it quickly got reined back in. My brother was still at risk... cousins were finding out their status... So then it becomes, ‘I have been freed from this, but now, other work begins.’”
The burden of how you “should” feel
You might think, “This is happy news—why do I feel bad?”
Learning you don’t carry a genetic mutation after years of worry is a significant emotional event. Even with a favorable result, you may experience sadness, exhaustion, or confusion. You might have lived for years with the belief that you were destined to develop the disease. Letting go of that belief can feel disorienting.
Emotions can flood in like a dam breaking—grief, relief, even guilt. It’s okay if you’re not sure what you feel.
Survivor’s guilt
It’s common to feel guilt for testing negative when others you love have not.
One community member said, “Why have I been spared from this when people I love haven’t?” Another reflected, “I am happy, and yet I don’t talk about it with my family.”
Sometimes guilt even leads to distorted thinking about your own ability to prevent an outcome, your role in causing it, or wrongdoing on your part. One member of the community expressed sadness that their sibling deserved to be the one who tested negative, because they didn’t get in trouble as often when they were growing up. Obviously, this isn’t how it works, but our minds can play tricks on us when we are dealing with big emotions.
Trouble believing the negative result
It’s also common to doubt the result. “I was certain I would test positive,” one person said. “I thought I had symptoms.” Another added, “The disbelief crept in so heavily that I got retested.”
Your genetic counselor can help you understand the accuracy of your result. If you tested through a direct-to-consumer service or got your result through another nontraditional route, consider finding a genetic counselor for confirmation.
A loss of identity or belonging
Shared risk can bond people, like “we’re in this together.” After a negative test, some feel disconnected from others in the FAD community or unsure whether they still belong in support groups. The transition can feel like a loss of identity.
Even though you tested negative, the emotional weight of living under the shadow of FAD doesn’t disappear overnight. Acknowledge the journey you’ve been on—and that you may still need support.
Urgency to help others
Testing negative may also create a sense of responsibility to support family members and the wider FAD community.. One community member said, “As the one that's negative, I have to be the one that's strong and helps them figure this out. I have to help them do all of it, and I have to be the best person that I can be in my own life because I've been given this chance and I can't blow it.”
Another member of the community explained it this way: “I feel like because I’m negative, I have the capacity to do all these things for other people. I’ve put all of that weight on myself and I carry that.”
This motivation can be empowering but also overwhelming. Make sure your drive to help others doesn’t lead to burnout.
A sense of helplessness
Those who test positive often find purpose in participating in research. If you’ve tested negative, you might feel you’ve lost a way to contribute. But even those who don’t carry the gene can play a vital role—some studies welcome participants regardless of mutation status (more below).
Challenges to family dynamics
Family relationships may shift after your result. Some relatives may feel isolated, while others may not want to discuss testing at all. One person shared, “I feel like we were close and we had this bond, like we were in it together. And then when I got tested, I was negative. It was like they were alone now.”
It can be tempting to think that a negative test for one person means a positive test for someone else, although that’s not how the odds work; each child of someone with an autosomal dominant genetic mutation has their own independent 50% chance of inheriting the mutation.
Some family members may feel that they can’t handle thinking or hearing about Alzheimer’s, and their lack of enthusiasm to hear your good news can feel like a betrayal.
It may not feel right to lean on family members who have tested positive or are still at risk.
You might also struggle to connect with relatives who’ve chosen not to test. Respecting each other’s choices is key, even when it’s difficult.
Difficulty talking to others
Friends or colleagues may not understand the emotional impact of a negative result. One member said, “I have shared my results with some people, and I have not gotten the response that I was hoping for. Like, it wasn't a big deal to them.”
If others minimize your experience, it can be painful. Consider confiding in those who’ve had similar experiences or are open to learning.
Reflecting on the experience
Youngtimers community members who tested negative offered these reflections: about what they wished they had known sooner or done differently.:
One member shared that she wished she had been more thoughtful in how she disclosed her status, especially to family. “I thought I was being mindful of their feelings, but I probably could have done a better job with that.”
Another reflected that seeking therapy earlier would have helped, even though she initially assumed being negative meant she wouldn’t need it.
One person wished they’d gotten their genetic results in person: “I remember her voice saying what she said, which was beautiful, but I would have loved to have been able to see her face.”
Another person said she wished that she hadn’t shared her results as broadly. “Most of the people I shared with, I wish I hadn't. This is for me. I don’t have to share this with anyone. If I need to talk, I can share with someone what has been through what I’ve been through.”
One reflected that he probably should have tried to get a better support system in place. In hindsight, he doesn't think he and his wife were actually prepared to handle a positive result.
Another used her own experience to guide her aunt and uncle through the genetic testing process. She wished she had encouraged them to get not only life insurance, but also long term care insurance.
One person emphasized the importance of really considering what you want to do differently based on the results. Her genetic counselor had asked, “How will you feel if you’re negative?” and she was glad to have already gone through an exercise about this.
Moving forward in your new reality
Allow yourself to feel the feelings, even the unexpected ones
Feelings are involuntary, but humans like to be in control. Sometimes, we resist feelings that are uncomfortable, overwhelming, or that we don’t think we should have.
But it’s only when we acknowledge and process the feelings that we can move forward.
One member of the community said, “I feel like I need to recover from that time. Even though I got the result that I wanted, I still feel like I need rest.”
Allow space to process guilt, grief, fear, or loss—even if they don’t align with what you expected to feel after a negative result.
Talk to someone
A recent study showed that even those who test negative for an autosomal dominant mutation may benefit from ongoing support. Years of living under the assumption of a 50/50 chance may have shaped your identity, choices, and outlook.
Youngtimers has a network of people on hand for peer-to-peer support. To talk to who has been there, inquire about the peer-to-peer support network.
You can ask your genetic counselor for a follow-up appointment or a referral to a mental health professional, or contact Youngtimers for help finding specialized counselors and therapists.
Participate in research
The DIAN Observational Study is open to adult children of parents with a known FAD mutation—even those who test negative themselves.This study supports global research into early detection and potential treatments.
Learn more about participating in the DIAN Observational Study.
Find ways to give back
Those who test negative have much to gain from participating in the Youngtimers community, and much to offer our community, as well.
The unique perspective gained by having a brush with fate can inspire a lifelong sense of gratitude and appreciation for life.
People who have tested negative often end up fulfilling important roles in our community:
Raising awareness without the personal risk of genetic discrimination
Supporting others undergoing testing or diagnosis
Inspiring hope by sharing their stories
Participating in our peer-to-peer community to help others
Helping other people understand the disease, inside their families and in the world at large
Advocating for Alzheimer’s disease research
Helping raise funds for Alzheimer’s disease research, Youngtimers, and other related causes
Putting their time and skills to use as volunteers within our organization
Serving as caregivers for loved ones with the disease
Pursuing careers roles in research, healthcare, and other related fields
Genetic testing: stories from the community
