How Do I Talk to My Family About Genetic Risk for FTD?

Finding out that your diagnosis of FTD or your spouse’s FTD is caused by changes in the GRN (progranulin) gene can be difficult to hear. Learning that a condition is genetic doesn’t just impact the person with the diagnosis; it changes the picture for everyone in the family. Suddenly, a conversation you never planned to have, with a sibling, a parent, your own children, feels both urgent and impossible.

There's no single right way to have this conversation. But there are ways to make it easier, and things worth thinking through before you start.

Start with yourself first

Before you talk to anyone else, give yourself room to process what you've learned. Genetic risk information can bring up grief, anger, guilt, or a strange kind of relief at finally having an explanation. All of these are normal. You don't owe anyone an immediate conversation just because you now have information. You are allowed to sit with it, talk to a genetic counselor, or process with a therapist first.

It can also help to get clear on the basics before you're explaining them to someone else:

Changes in the GRN gene are inherited in an autosomal dominant pattern, meaning each child of a carrier has roughly a 50% chance of inheriting the same genetic change.
Carrying the genetic change is not the same as having symptoms. Age of onset and disease course can vary even within the same family.
Genetic counselors exist specifically to help translate this information and support families through these conversations, involving one early and talking to a genetic counselor as a family can take pressure off you to be the expert and explain complicated information to family members.

Decide what you actually want to share, and why

Some families want to share full genetic details right away. Others start with a more general conversation, suggesting "there's a pattern in our family we're looking into", or asking others if they have noticed a pattern. As you have these conversations it can be helpful to gauge their interest in hearing what you learn before getting into specifics. Some family members will actively engage and clearly want to stay informed and others may make it clear they don’t want to know any more.

It is important to balance your desire to share information with family members’ interest in receiving information about genetic risk factors in the family.

It can help to ask yourself:

Am I sharing this so a family member can make informed decisions about their own testing, health, or family planning?
Am I sharing this because I need support and don't want to carry it alone?
Is there a reason to wait, someone going through a hard time, a child too young to process it, a family member who's told you they don't want to know?

There's no obligation to share everything at once, or to share with everyone in the family the same way at the same time.

Choose your moment and your words

A few things tend to make these conversations go better:

Pick a low-pressure setting. A quiet, private moment, not a holiday dinner or a moment already loaded with other stress, gives the other person room to react honestly.

Lead with the relationship, not the diagnosis. Something like "I found out something about our family's health history, and I wanted you to hear it from me" speaks to a trusted relationship and transparency rather than just focusing on the information itself.

Be honest that you don't have all the answers. You don't need to be a genetics expert. It's ok to say, "I don't fully understand all of it either” and to share resources that you found rather than feeling responsible for knowing and explaining complex medical information.

Expect a range of reactions. Some relatives will want every detail immediately. Others will need distance, or may not want to know their own risk status at all. Both responses deserve respect. Genetic testing is a personal choice, not something anyone should feel pressured into.

What to say to children and younger relatives

Conversations with kids or teens depend heavily on their age and what they're ready to hear. Broadly:

You don't need to lead with genetics. Start with something concrete and honest about a family member's health.
Let them know that symptoms usually don’t start until people are grown up. And the age when symptoms start can be very different, even for people in the same family.
Let them ask questions over time rather than trying to cover everything in one conversation.
Consider involving a genetic counselor or child psychologist experienced with hereditary conditions if the conversation feels like more than you want to navigate alone.

When someone doesn't want to talk about it

Not everyone will want to engage, and that's their right. Pushing too hard can damage trust and make future conversations harder. You can leave the door open and let them come back to it on their own timeline.

You don't have to do this alone

Genetic counselors, FTD support organizations, and online communities of families managing GRN-related FTD can be a real source of guidance both for the practical questions (how does testing work, what does a positive result actually mean) and the emotional ones (how do I say this out loud without falling apart).

If you're not sure where to start, a genetic counselor is often the single most useful first call: they're trained specifically to help families navigate exactly this conversation, and can meet with you before, during, or after you talk to relatives.

AFTD has a resource that allows you to search for clinics, genetic counselors, and support groups (including support groups for people at risk for genetic forms of FTD who have tested positive and those who have chosen not to be tested).