Talking with kids about familial Alzheimer’s disease
A Youngtimers Guide ・ Last Reviewed July 3, 2025
In families impacted by Familial Alzheimer’s Disease (FAD), the challenges go far beyond caregiving. Whether a parent is showing symptoms, has tested positive for the mutation, or is navigating the emotional complexity of having a family history of FAD, children are often part of the picture—quietly observing, wondering, and forming conclusions on their own.
Parents and caregivers carry the double burden of managing their own emotions while trying to decide how, when, and how much to share with their children. It’s not easy. There’s no perfect script. But there are well-considered strategies that can help.
Questions FAD families ask
Across the FAD community, many parents and caregivers wrestle with questions like:
How do I tell my kids about the disease—without overwhelming them?
What if I'm not symptomatic yet, but I carry the mutation?
What if my child asks if they’ll get it too?
What’s age-appropriate for this kind of conversation?
Can I be honest without taking away their sense of security?
How do I talk about a grandparent or aunt who is showing symptoms?
These are deeply personal questions—rooted in love, concern, and the hope of protecting your child while also preparing them.
To support families as they grapple with these questions, Youngtimers has brought in experts for interviews and live events. Although little research exists about talking to kids about Familial Alzheimer’s Disease (FAD) in particular, we can learn from the world of Early Onset Alzheimer’s disease in general, and from research about Huntington’s disease, which another inherited, progressive brain disorders that affect families across generations.
What we’ve learned about talking to kids about FAD
1. Start with honest, age-appropriate language
Children are intuitive. Even if they don't understand the specifics, they notice changes: stress in the household, differences in how someone behaves, or quiet conversations behind closed doors. Without facts, their imaginations can fill in the blanks—sometimes in ways that are more frightening than the truth.
You can begin by:
Naming the disease: "There’s something in our family called FAD, or Familial Alzheimer’s Disease. It’s a disease that affects memory and thinking."
Explaining what they might see: "You might notice Kyle repeating things or seeming confused. That’s part of the illness."
Reassuring: "None of this is your fault. And you're not alone in this."
You don’t have to explain everything at once. These conversations can—and should—unfold over time.
2. Adapt your approach to your child’s age and development
Every child is different, but here are some general guidelines:
Young children (3–7): Keep it simple and concrete. “A part of his brain is sick, and that’s why he forgets things.”
School-aged kids (8–12): Offer more detail. Encourage questions, and admit when you don’t know something.
Teens (13+): Older kids may want to understand genetics, risk, and science. Be honest, and empower them to be part of the ongoing conversation.
Your tone matters more than getting all the words right. If you’re calm and open, your child will feel safer—even if the topic is difficult.
3. Make it an ongoing conversation, not a one-time talk
This isn’t a single moment—it’s a series of conversations over time.
Try saying:
“If you ever wonder about something, you can ask me.”
“There are no bad questions.”
“It’s okay to talk about this—or not talk about it—whenever you want.”
Normalize questions, curiosity, and even silence. Some kids will want to know everything at once; others will need time.
4. Address feelings: theirs and yours
Just like adults, children may experience a mix of emotions: sadness, confusion, anger, fear, numbness, even guilt. Let them know this is all okay.
You might say:
“It’s okay to be upset. I feel that way too sometimes.”
“You don’t have to be brave all the time.”
“We’re going through this together.”
Don't be afraid to show emotion yourself—it models that feelings are safe, and that strength doesn't mean silence.
5. Talk about genetics carefully and with reassurance
When FAD runs in your family, your child will eventually ask: “Will I get it too?”
This is one of the hardest questions. It’s best to answer honestly, but depending on your child’s age, the specificity of your answer will vary. You might say:
“Yes, FAD can be passed down in families—but just because it’s in our family doesn’t mean you will get it.”
“There are doctors and scientists working on this. We don’t have all the answers yet, but they’re working on them.”
“If you want to learn more about your risk when you're older, we can talk more about it then.”
Every child and family is different. Some families share genetic information early; others wait. Parents often think about how their child will feel when they get the news, but it’s also important to think about how you child might feel about having not been told.
In their words: how families navigated the conversation
For many parents, it’s helpful to understand what other families have experienced. Here are some insights from families that have been through it, about what worked and what didn’t.
“My family didn’t tell me because they wanted to protect me. Looking back on it, I wish that I had known that the time I’d have with my dad was limited. I would have approached things differently.”
“My kids were less concerned with the news than I thought they’d be. They’re 13 and 16, so this feels really far away for them. Right now they’re really focused on what they’re going to wear to school tomorrow and what they’re going to do this weekend.”
“When we got the news, the genetic counselor suggested reading the guide to talking to kids about HD. We did, and it suggested talking about Alzheimer’s as a normal part our family’s life. So that’s what we have done. My kids know that Grandpa can’t think clearly anymore, but that he used to be very smart. They know that Mom carries the gene, but she is going to be a part of a clinical trial to try and prevent the disease. They know the scientists are working on a cure and will probably have made a lot of progress by the time they get older. We talk about it sometimes, but they are less worried about it than I feared.”
“Learning about my parent’s disease changed the direction of my life. I chose my college major and my career because of this situation; I was inspired to make a difference.”
Tools, resources, and support for talking to kids about FAD
Even though FAD is rare, you're not alone. Resources developed for other genetic diseases like Huntington’s can be incredibly useful:
Talking With Kids About HD ⧉ , a free PDF from the Huntington’s Disease Society of America (HDSA)
Talking to Kids About Huntington's Disease: A book for people who know children with HD in their family ⧉, a Kindle eBook by Dr. Bonnie L. Hennig-Trestman
Talking to Kids About Huntington’s Disease ⧉, an article from the Huntington’s Disease Youth Organization (HDYO)
Top Tips: Talking to Children About Huntington’s Disease ⧉, an article from the Huntington’s Disease Youth Organization (HDYO)
At Youngtimers, our community programs can facilitate connections to other parents who have been through this.
Sign up for our newsletter to stay informed of upcoming events
Leverage our peer-to-peer program to connect one-on-one with someone in the FAD community who has faced similar challenges.
Join the DIAD Private Facebook Group ⧉
Browse the EOFAD Online Forum ⧉
Final thoughts
FAD changes the fabric of a family, but it doesn’t erase love, strength, or connection. Children don’t need perfect answers. They need honesty, patience, and to know they are not alone.
By choosing to talk courageously and with care, you help your child build resilience, compassion, and trust. And in doing so, you reinforce one of the most powerful truths there is: even when facing a difficult legacy, families can still grow stronger together.
Expert insights on talking to kids about FAD
