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Dementia and Children: Helping Families Stay Connected

3 hours ago
6 min read

At a Glance

When someone you love is diagnosed with dementia, it’s easy to wonder what to say, especially if there are children in the family. With a few simple changes in how we talk, listen, and spend time together, children and adults can continue building connection, even as the disease progresses. This article shares practical ideas to help families approach dementia with honesty, compassion, and hope.


• Use simple, honest language to explain dementia to children based on their age and understanding.

• Focus on creating moments of connection through shared activities like reading, music, or play.

• Offer clear choices instead of open-ended questions to make communication easier.

• Respond to emotions rather than correcting memory mistakes.

• Encourage children to engage in the moment rather than expecting things to be the same as before.

• Include the person with dementia in decisions, even small ones, to maintain dignity.

• Reassure children that dementia is not their fault and cannot be caught.

• Adapt visits to what feels comfortable and enjoyable for both the child and the grandparent.




Years before writing How to Play with a Grandma, Evan Bass Zeisel was part of a team studying an unusual approach to dementia care. The project, called Scripted-IMPROV*, used interactive improvisational theater to engage people living with dementia. Instead of asking participants to remember facts or follow a script, the project invited them to create stories together, with actors trained to build on whatever they contributed.


During one performance, a woman who had been quiet and withdrawn for months was cast as the town gossip. She chatted with the other participants, made everyone laugh, and even improvised a spoken-word poem. After the performance, her children approached Evan.


"We haven’t talked with our mother in over two months," they told them. She had been largely non-responsive and had stopped speaking due to the progression of her dementia.


That experience became a reminder that dementia doesn't erase a person's ability to connect. Sometimes what changes most isn't the person living with dementia. It's how the rest of us communicate with them.


That same idea is woven throughout Evan's children's book, How to Play with a Grandma. While written for young readers, its message is just as valuable for parents, caregivers, and anyone supporting a loved one with dementia. It reminds us that meaningful relationships can continue, even when memory changes.


Dementia and Children


For many families, a dementia diagnosis in a grandparent or older loved one marks the beginning of a difficult and uncertain chapter. Parents suddenly find themselves answering questions they never expected: "Why doesn't Grandma remember my name?", "Why does Grandpa keep telling the same story?", "Will they forget me?" These questions are difficult because many adults are asking themselves the very same things.


It's natural to focus on what dementia takes away. Memory changes. Conversations become different. Familiar routines may no longer work. But if that's all we see, we risk overlooking something just as important: Relationships can continue to grow. They may change, but they don't have to end. That shift in perspective can make a tremendous difference for both children and adults.


Children Often Adapt More Easily Than Adults


Adults often approach dementia with expectations based on the past. We remember who someone used to be and instinctively hope they'll respond the same way they always have. Children don't always carry those expectations. They're naturally present in the moment. They invent games, change the rules as they go, and aren't nearly as concerned about whether something is happening "the right way." If today's visit looks different from last week's, they're often willing to adapt. That flexibility can become one of their greatest strengths.


Instead of asking children to mourn the relationship they once had with a grandparent, we can help them discover the relationship they still have today. That doesn't mean pretending dementia isn't real. It means recognizing that connection doesn't depend entirely on memory.


Don't Measure the Relationship by Memory


One of the biggest misconceptions about dementia is that forgetting details about someone, like their name, means forgetting the person. Those aren't always the same thing. A person living with dementia may struggle to retrieve names or specific memories while still recognizing someone emotionally. They may smile when they hear a familiar voice, laugh at a favorite joke, or enjoy holding a grandchild's hand, even if they can't explain why.


For children, this is important to understand. Instead of saying, "Grandma doesn't remember you anymore," we might explain: "Grandma's brain is making it hard to remember names, but she still knows you're someone she enjoys being with." This helps children understand that even if someone forgets details, they can still feel important and loved.


How We Communicate Matters


Many of us unintentionally make conversations harder for someone living with dementia by asking questions that feel like tests, such as "Do you remember who this is?", posing broad, open-ended questions like "What would you like to do today?", or instinctively correcting details when someone's memory doesn't match our own. While these responses are well-intentioned, they can create frustration, anxiety, or embarrassment.


Instead, Evan encourages us to meet people where they are. Offer two simple choices instead of asking an open-ended question, such as "Would you like tea or lemonade?" Rather than correcting a memory, respond to the feeling behind it. If someone says they're worried about getting home to their parents, instead of reminding them their parents died years ago, acknowledge the emotion first by saying, "You really miss them." Validation often creates far more connection than correction.


Respect the Adult Behind the Diagnosis


Too often, we begin treating adults with dementia as though they've become children. That has always bothered me. A person living with dementia has lived an entire lifetime. They've built careers, raised families, experienced joy and heartbreak, developed opinions, and accumulated decades of wisdom. Dementia may change how they communicate, but it doesn't erase who they are.


Respect can be shown in surprisingly simple ways by offering choices whenever possible, asking for their opinion, including them in conversations, and giving them opportunities to make decisions, even small ones, such as asking, "Which sweater would you like to wear?", "Would you rather listen to The Beatles or The Rolling Stones?", or "What do you think about this picture?", because these moments preserve dignity by reminding someone that their voice still matters.


Sometimes Children Show Us the Way


One of my favorite takeaways from this conversation is that children naturally do something many adults struggle with: they stay in the moment. If Grandma suddenly starts pretending she's on a train, a child is much more likely to climb aboard and join the adventure. Adults often feel the need to correct the story or bring the conversation back to reality. Children simply play.


In many ways, they're already practicing one of the most effective communication skills in dementia care; they're accepting the world as it exists in that moment. That doesn't mean children understand dementia better than adults. They recognize that conversations don't have to be perfectly accurate to still have value. There's something wonderfully freeing about that.


Helping Children Feel Comfortable


Children don't need lengthy medical explanations; they need reassurance. It's okay to explain that dementia affects the brain and makes remembering things more difficult. It's also important to let children know that they didn't cause it, they can't catch it, and their grandparent still enjoys spending time with them, even if that time looks different now.


Then, focus less on conversation and more on shared experiences by reading a favorite book together, coloring pictures, listening to music, looking through family photographs, taking a short walk, holding hands, or even dancing in the living room, remembering that the activity itself is less important than the feeling it creates.


Relationships Can Continue


No book, conversation, or communication strategy can remove the challenges of dementia. There will still be difficult days filled with moments of sadness and grief. There will also be laughter, curiosity, creativity, and unexpected moments of joy. That’s what I appreciated most about my conversation with Evan: He never minimized the reality of dementia. Instead, he reminded us that relationships don’t have to end because communication changes.


Children may not remember every visit with a grandparent years from now. What they often remember is how that person made them feel: the hugs, the laughter, the games they invented together, and the stories they shared. Those moments continue to matter even when memories become less reliable. Perhaps that’s one of the greatest lessons dementia can teach all of us. As Evan reminded us today, relationships can continue to grow when we're willing to meet people where they are, rather than where we wish they were. And perhaps that's a lesson that extends far beyond dementia.



Links/Resources



*Zeisel J, Skrajner MJ, Zeisel EB, Wilson MN, Gage C. Scripted-IMPROV: Interactive Improvisational Drama With Persons With Dementia-Effects on Engagement, Affect, Depression, and Quality of Life. Am J Alzheimers Dis Other Demen. 2018 Jun;33(4):232-241. doi: 10.1177/1533317518755994. Epub 2018 Mar 5. PMID: 29504407; PMCID: PMC10852482.

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