Where to start after testing positive for familial Alzheimer’s genetics
A Youngtimers Guide ・ Last Reviewed Jul 2, 2025Feel 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.
Sign up for our monthly newsletter, which provides all the latest information for people like us, including studies and drug trials for which you might be eligible.