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  • Writer's picturePenn FTD Center

Living with FTD: What about the kids?

Guest author Alison Lynn, MSW, LSW is a licensed social worker and the Assistant Director of Care Programs at the Penn Memory Center. Alison provides counseling, education, and psychotherapy to patients and families affected by a diagnosis of dementia. Allison was a speaker at the 2017 FTD Caregiver Conference and shared invaluable information for helping children and teenagers negotiate the changes when a parent or other close loved one is diagnosed with a neurodegenerative disease such as Frontotemporal Degeneration.

I recently met with a young mother* who was struggling with a tough question: her husband had just been diagnosed with FTD, and she needed to tell her middle and high school-aged kids. She worried not only about how to tell them, but also how to support them through the course of her husband’s illness when she, too, would be struggling. She needed a road map of what was to come and how she could possibly handle it. Here is some of what I shared with her:

  • First and foremost: to support your child, you must first support yourself. Not only does this “fill your tank,” or enable you to provide your children with extra TLC during a difficult time; but it also models healthy coping mechanisms for stress, grief, and other negative emotions.

  • Your children will be grieving. We used to think that children don’t experience grief, and largely shielded them from our experience of it. We now know that children do grieve, just differently than adults do. Discouraging them from expressing their grief (“just go out and play!”) will do more damage than good. Some of the ways your child might express his/her grief include: persistent physical complaints (stomachache, etc.), “acting out” at school, magical thinking and self-blame (“I made Dad sick”), problems with eating or sleeping, using play to act out what’s going on at home, and, if you have a teenager, engaging in increased risk-taking behavior.

  • Kids know when something isn’t right, even if (especially if) we try to shield them from it. The best course of action is to be forthcoming, honest, and as factual as is age-appropriate when disclosing a diagnosis. If you don’t feel equipped to have this conversation on your own, consider bringing in someone close to you or your family, like a friend or a trusted health professional. And remember – the conversation doesn’t stop after the diagnosis is disclosed. You should remain open to, or initiative conversations with your kids as the disease progresses.

  • Try to keep routines as consistent as possible, and identify an “alternate parent.” Kids needs to know that even if Dad is sick, and Mom is less available because she’s taking care of him, that they will still be safe and listened to. Identify someone in your family or circle of friends who your kids trust and who can stand in at soccer games, music recitals, and the like. Create new routines with these people that your kids can look forward to as special time that’s just for them.

  • “Give children jobs, not roles.” (Kathleen McCue, 2011). When you lose the support of your spouse, it’s easy to fall into a pattern of relying on your child. Children can be called upon to help out with age-appropriate tasks around the house, such as doing a chore your spouse used to do. But they should not be called upon to provide you with the kind of emotional support your spouse would. It’s a good idea to check in every now and then to see if your child is worried about you.

  • Expect kids to just be kids sometimes. It might be hard for you to see your child carrying on with their normal routine when you may feel overwhelmed by your responsibilities as a caregiver. But this is what we want – children are incredibly resilient and can grow up to have emotionally healthy lives if we support them appropriately.

*Details about this scenario have been drawn from interactions with multiple families to protect patient privacy

To learn more about supporting children and teens living with a loved one’s FTD, please read the Association for Frontotemporal Degeneration’s excellent booklet What About the Kids?



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