Youngtimers Guide
Testing positive for a familial Alzheimer’s genetic mutation
Last Reviewed: April 22, 2025This guide is for those who have learned that they (or a loved one) 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 carry the genetic mutation for FAD. Where does one start?
We have spoken with members of the Youngtimers community who have tested positive for FAD genetics.
In this guide, we share the themes of those conversations and insights to help you navigate this new chapter.
First, feel the feelings.
If you spoke with a genetic counselor before your genetic testing, they likely asked you to imagine how you might feel if you found out you tested positive. Now, you’re here. Sometimes the feelings are what you expected, and sometimes they aren’t.
“It was devastating to hear the news. It was awful,” said one community member.
“The first few months were incredibly hard,” said another.
“I cried, but I was just relieved to know. Finally, I have an answer to what's been going on,” said another person.
Some people feel shocked. Some feel heartbreak. Some feel relief, and others feel despair. There’s no one right way to feel after getting news like this, and members of the Youngtimers community report that their feelings about the news change with time.
Take time to really feel your feelings, as painful as they may be. Find a way to let them out. Resist the temptation to bottle them up or stuff them down.
Watch our 3-part mental health workshop with Dr. Cynthia Wilcox to learn about facing fears and feeling feelings.
Lean on your support system.
The simple act of talking about your feelings and your situation with someone you trust can help a lot. Although other people may not have advice or a cure, they can lend an ear.
You may have a spouse, a partner, or a best friend who serves as the front line of support for you. It’s a heavy topic, and it can be good to confide in a few members of your inner circle if you can. Because of the familial nature of the disease, some members of the community find that it’s easier to talk about the situation with people outside of the family.
Although the results themselves are a lot to digest, a positive genetic test can mean that Alzheimer’s disease and the emotions surrounding it are a theme that will resurface throughout your life. It can help to find a mental health professional to help you process not only the genetic news, but also the many unique challenges that will arise over the long term.
Reach out to Youngtimers for our list of recommended Mental Health Professionals
Connect with others in similar situations.
Although the news can feel isolating, one community member reminds us that, “There's support through Youngtimers. There's other people out there just like you and you're not alone.“
Youngtimers brings together an incredible group of FAD mutation carriers, family members, caregivers, genetic counselors, and researchers. There are people in our community facing situations similar to yours.
Our virtual support groups, held monthly, give you a chance to speak with others in similar situations
Our peer-to-peer program connects you one-on-one with a person who can help you along the way
Our forum is a place where you can post anonymously and discuss topic-specific questions within the community online
The private Facebook Group connects FAD patients and families to ask questions and provide support to one another.
Learn more about the disease
For many people, testing positive for a genetic mutation associated with FAD is the beginning of a learning journey. You may have known that Alzheimer’s runs in your family, but never dived deeper into the specifics.
In the section of our website called The Disease, you can learn about the genetic mutations behind Alzheimer’s, how the disease is diagnosed, treatment options that are available, and those that are currently in testing.
In the News and Research section of our website, you can catch up on all the latest information for people like us, including studies and drug trials for which you might be eligible. There’s a lot happening. You can also sign up for our monthly newsletter, which provides updates on patient resources and information.
Sharing your truth
Aside from your inner support circle, who should you tell?
Some people pride themselves on being open and honest. Hiding genetic results can create inner conflict or a feeling of isolation.
“When I didn't tell people, it felt like I was under this bell jar. People saw me, but I felt like they didn't really see me,“ said one community member.
Still, some people who decided to share openly in the early days after getting their Alzheimer’s results later regret it. That’s why some members suggest resisting the urge to tell those outside of your innermost circle until the dust has settled. Some suggest waiting at least a month, while others say you should wait six months or longer.
One person said, “Even if you have the inclination to share, really have some self-control. Maybe set a timeline for when you will share, but do not allow yourself to do it right away. Because you can never undo that. “
Some members of the Youngtimers community choose to keep their status private because they want to avoid sharing information that exposes other family members. Some want to avoid the risk of genetic discrimination. Others struggle to find the right time to share the news, or worry about the impact it would have on the person they tell.
Some people like talking about their genetic status. Those people report a variety of reasons for sharing, including:
Getting feelings off their chest.
Putting their experience to use in order to help others, by sharing specific information that’s hard to find elsewhere.
Channeling energy into advocacy, to help drive change.
Sometimes, those who decide to share their results find that talking about such a complex topic presents challenges they didn’t anticipate. Community members say they’ve had to learn how to talk about it in a way that others can understand, and sometimes, others’ responses might not be what you would hope.
“It's something that I've had to learn how to talk about–how to find the words, what words to use, how to say this, but also how to help other people deal with me,” said one community member, “It's difficult and awkward for me, and it's just as difficult and awkward for the other person.”
These examples highlight the nuance to sharing. Some people are extremely thoughtful and compassionate, and they do a great job of supporting you as you learn to cope with this new reality. Some people try to say and do things that help, but ultimately have a hard time understanding the complexity of the situation. With some people, you may find yourself needing to help them cope with your genetic result, reassuring them that you will be okay. That’s why it’s good to be thoughtful about who can really provide support.
Ultimately, you get to decide who you want to share the news with, and whether to share it at all. Choosing to keep the results to yourself is not dishonest. Just like politics or finances, your medical information isn’t something you have to share.
Talking to children about FAD
If you have children, you’ll begin thinking about when and how to share this information with them.
Youngtimers conducted an interview and a Q&A session about How To Talk to Kids about FAD, featuring Dr. Bonnie Hennig-Trestman, Assistant Professor at the Virginia Tech Carilion School of Medicine and Director of the Huntington's Disease Program at Carilion Clinic. She is also the author of the free book, “Talking with Kids about HD” (PDF) which genetic counselors recommend to parents trying to navigate talking to kids about inherited neurodegenerative disease.
Life changes you may consider
Upon getting this news, some people are motivated to make changes. Members of the Youngtimers community experience changing levels of motivation and interest towards taking action over time, and that’s very normal. 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.
Don’t be surprised by “emotional relapses”
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
