Reviewed by the Help Dementia Editorial Team — our editors review every article for accuracy against guidance from the National Institute on Aging, the Alzheimer’s Association, and peer-reviewed sources.
While specific widely-documented cases of grandchildren creating their own picture books to explain dementia aren’t readily found in major publications, the concept reflects a real and growing practice among families facing dementia. Many families have recognized the value of creating or using picture books as a tool to help younger children understand what their grandparent is experiencing. This article explores both documented published resources—like “Dancing with Granddad: An Alzheimer’s Story for Children and Their Families” published by the Alzheimer’s Foundation of America—and the broader movement toward dementia education for children through illustrated storytelling. We’ll look at why families pursue this approach, what resources already exist, and how you can help the children in your life understand dementia in age-appropriate ways.
Table of Contents
- Why Families Use Picture Books to Explain Dementia to Children
- Published Resources for Teaching Children About Dementia
- How Picture Books Help Children Process Dementia
- Creating vs. Using Existing Children’s Dementia Books
- Limitations of Picture Books Alone
- Age-Appropriate Approaches Beyond Picture Books
- The Expanding Landscape of Dementia Education for Children
- Conclusion
Why Families Use Picture Books to Explain Dementia to Children
Children often struggle to understand why a grandparent forgets their name, repeats questions, or behaves differently than they remember. Without a clear, compassionate explanation, kids may internalize confusion, fear, or guilt. Picture books designed for this purpose fill a critical gap by translating complex neurological changes into language and imagery children can grasp. The goal isn’t to minimize dementia but to help kids understand it’s a disease, not something grandma is doing on purpose or because she doesn’t love them.
Many families find that having a concrete story or visual tool transforms difficult conversations. Rather than starting from scratch with abstract medical language, a book provides a shared reference point. It normalizes the experience, shows that others have grandparents with dementia, and offers language for children to express their own feelings. The Alzheimer’s Foundation of America recognized this need specifically, creating resources designed for this exact purpose.
Published Resources for Teaching Children About Dementia
Several professionally-developed picture books are available if you’re looking for vetted, research-informed tools. The Penn Memory Center at the University of Pennsylvania maintains a resource list of children’s books about Alzheimer’s disease and dementia, and the American Library Association’s Association for Library Service to Children published a 2023 blog post reviewing dementia-focused picture books. These resources demonstrate that there’s substantial published material available—you don’t necessarily need to create something from scratch. However, these published books may not feature your specific family situation.
“Dancing with Granddad” tells one family’s story, but your grandmother’s experience may differ in important ways. If you can’t find a published book that matches your family’s circumstances, that’s when the appeal of creating something custom becomes clear. A personalized book with familiar photos and family-specific details may resonate more powerfully than a generic story, even if it means investing time in creating it yourself. The trade-off: published books offer professional writing and illustration, while custom books offer personal authenticity.
How Picture Books Help Children Process Dementia
Picture books work on multiple levels. Visually, illustrations help children who are early readers or who learn better through images. Emotionally, a story structure allows children to experience the feelings they’re having through a character, which creates some psychological distance while still validating those emotions.
Narratively, books can show that love persists despite memory loss—a crucial message that prevents children from feeling abandoned. Research from organizations like the Alzheimer’s Foundation and clinical work by memory care professionals shows that children who’ve been properly prepared with accurate information about dementia report lower anxiety and better relationships with their affected grandparent. They’re less likely to interpret the grandparent’s behavior as rejection and more likely to find ways to connect despite the disease. For example, a book might explain that grandma remembers feeling love even if she forgets a face, or that asking the same question multiple times is a symptom, not rudeness.
Creating vs. Using Existing Children’s Dementia Books
If published books meet your family’s needs, that’s often the most practical path. They’re already written, illustrated, and vetted for accuracy. You can order them, read them with your grandchildren, and discuss as needed.
The Alzheimer’s Foundation and Penn Memory Center resources are free starting points. Creating a custom book makes sense when: published options don’t reflect your family’s story, you want to include actual family photos, or your children need something more personalized to process their specific relationship. However, creating a quality picture book requires writing skill, illustration ability or budget to commission art, and time to produce and print it. A middle-ground approach many families use: selecting a published book that’s closest to your situation, then supplementing it with your own conversations and perhaps creating a small photo-based companion booklet that shows your specific family.
Limitations of Picture Books Alone
Picture books are a starting point, not a complete solution. A child who reads a dementia book once may have initial understanding, but they’ll need ongoing support as the disease progresses and their grandparent’s condition changes. What book explained may not match what the child observes months later. It’s important to frame books as part of broader honest communication, not as a substitute for it.
Additionally, books work best for children roughly ages 5-12. Very young children may lack the cognitive ability to retain or process the information. Teenagers often need deeper, less illustrated resources that treat them more like emerging adults. If you’re working with children outside that middle range, a book may be part of your approach, but you’ll need supplementary conversations tailored to their developmental stage. A child dealing with a grandfather’s advanced dementia will need different support than one whose grandmother is in early stages—the book’s timeline may not match reality, which creates new confusion.
Age-Appropriate Approaches Beyond Picture Books
Children aged 5-8 respond well to simple picture books with concrete language: “Grandma’s brain is sick. Her brain helps her remember things, but the sickness makes that hard. She still loves you.” Children aged 9-12 can understand more nuance: disease progression, why certain behaviors happen, and what’s happening in the brain itself.
Teenagers benefit from factual resources about Alzheimer’s disease and dementia types, conversations about prognosis, and opportunities to be part of caregiving decisions if appropriate. The ALSC (American Library Association’s Association for Library Service to Children) blog reviewing dementia picture books notes that the best resources acknowledge both the changes children will observe and the continuity of relationship. A good book or conversation helps a child hold both truths: grandma is changing, and grandma still loves me.
The Expanding Landscape of Dementia Education for Children
Organizations are increasingly recognizing that dementia education should start in childhood. The Alzheimer’s Foundation’s decision to create resources specifically for children reflects this shift. More libraries and schools are stocking dementia-related children’s books.
Some memory care facilities now offer family education sessions that include children-appropriate components. Looking forward, there’s likely to be more customizable and digital resources—interactive books, videos, and online guides that families can personalize. The goal remains the same: helping children understand dementia with compassion, accuracy, and age-appropriate language so they can maintain meaningful relationships with affected family members and process a difficult situation with less fear and isolation.
Conclusion
Whether through published picture books like “Dancing with Granddad” from the Alzheimer’s Foundation of America or through custom creations that reflect your family’s specific story, picture books and illustrated stories play an important role in helping children understand dementia. The starting point is recognizing that children benefit from honest, age-appropriate information rather than confusion or silence. Begin by exploring existing resources—the Penn Memory Center’s book list and the ALSC’s recent blog post on dementia picture books are excellent places to start.
If published options meet your family’s needs, use them as a foundation for ongoing conversations. If you feel called to create something custom for your grandchildren, do so knowing that personal, family-specific details can be powerful. Either way, the act of intentionally explaining dementia to children—through pictures, stories, or conversation—helps them process what they’re experiencing and maintain their relationship with their grandparent.
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For more, see Alzheimer’s Association.
