How to talk to your kids about dementia

When dementia hits, it can be hard for kids to understand why their grandparent is changing. Here are some ways to help them adjust

Amy Baskin,

Originally published in Today's Parent December 2011

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When they were young school-agers, Sophie and Hailey Hanson, of Toronto, loved visiting their baba Estelle. She always asked her granddaughters what they learned at school and how they felt about things. A talented musician, she often serenaded the girls on piano. And she never missed their dance or music recitals.

But Estelle started to show some troubling symptoms. “My mom seemed self-centred and had trouble following conversations,” says her daughter, Marla Schacter. An experienced baker, Estelle called one day and asked what icing sugar was. “That’s when I knew,” says Schacter. Estelle was diagnosed with Alzheimer’s at age 75.

“In the early years, my kids understood their baba was sick with Alzheimer’s, but they hardly noticed,” says Schacter. But recently, while spending a week together on a family trip, Hailey, now 11, was shocked by the changes in her grandma. “She didn’t know who I was,” Hailey told her mom. “She thought I was a boy. What’s wrong with her?”

“It’s scary and confusing for them,” says Schacter. “I see them backing away. They’re apprehensive, not knowing if she’ll know them one day to the next.” Family outings like restaurant visits are no longer doable. “How can I include everybody? How can I make this work for my parents and my kids?” she asks.

Many other families are facing the same dilemma. In Canada, more than 500,000 people have Alzheimer’s or some other form of dementia. This number will more than double in 25 years. Currently, 17 percent of Canadians have someone with dementia in their immediate family, says Tiffany Chow, a senior scientist at the Rotman Research Institute at Baycrest in Toronto. So it’s increasingly likely that kids will know a loved one with with the disease.

In a 2010 study at the University of Oxford, researchers explored how dementia affects the grandparent-grandchild relationship. The good news: They found that kids can continue to have a positive relationship with their grandparent. However, fostering this interaction takes effort on the part of the parents — not always an easy task, especially if they are themselves struggling to cope with the grandparent’s illness.

We asked experts and families to share their stories and strategies.

Coming up: How to explain the brain >