Sharing your results after testing positive for familial Alzheimer’s genetics
A Youngtimers Guide ・ Last Reviewed Jul 2, 2025Members of the Youngtimers community who have tested positive for FAD genetics often report feeling uncertainty about who to tell and how to tell them. There is no right answer to these questions, but it can help to understand what others have experienced.
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.