Dementia, including Alzheimer’s disease and its other forms, is a progressive disease. There is a common saying: “If you have met one person with dementia, you have met one person with dementia.” Much of that truth comes from the highly individual nature of the disease’s progression. One person’s experience may look completely different from someone else’s, even among people diagnosed with the same type of dementia.
The unpredictability of dementia can be confusing and even frightening for younger family members. For grandchildren, especially depending on their age or how often they see their grandparents, changes in behavior, communication, or daily routines can be difficult to understand. Whether these changes happen gradually or seem to occur suddenly, the way children interpret their grandparent’s dementia can shape how they respond emotionally and relationally.
Explain the Changes People Living With Dementia May Experience
Experts encourage parents to talk openly with children about dementia, particularly the specific type of dementia affecting their grandparent. Honest, age-appropriate conversations can help children better understand the changes they may notice and reduce fear or confusion surrounding the disease.
When talking with children, it can help to use simple, concrete language. Younger children may not understand terms like “memory loss” or “cognitive decline;” however they can understand explanations such as, “Grandpa’s brain is having trouble remembering things,” or “Grandma may repeat herself because her brain is not working the same way it used to.” Framing dementia in ways children can grasp helps create understanding instead of uncertainty.
It is also important to prepare grandchildren for behavioral or emotional changes they may witness. A grandparent living with dementia may forget names, repeat stories, become frustrated more easily, or seem withdrawn during family visits. Explaining ahead of time that these changes are part of the disease—not something caused by the child—can help grandchildren process difficult moments with empathy rather than fear or guilt.
Encourage Connection and Meaningful Interaction
Although dementia changes communication and routines, grandchildren can still maintain meaningful relationships with their grandparents. Children often respond well when they are given simple ways to connect and participate.
Encourage grandchildren to focus on activities rather than perfect conversations. Looking through family photo albums, coloring together, listening to music, gardening, baking, or going for short walks can create positive interactions that feel comfortable for everyone involved. Even when verbal communication becomes more difficult, shared experiences can still foster closeness and familiarity.
Adults can also model patience and reassurance during visits. Children tend to look to parents and caregivers for cues on how to react. Responding calmly when a grandparent repeats questions or becomes confused teaches grandchildren that people living with dementia still deserve dignity, kindness, and inclusion.
At the same time, it is important to give children space to express their emotions honestly. Some grandchildren may feel sadness, frustration, embarrassment, or even fear as their grandparent changes. Creating an environment where children feel safe asking questions and sharing feelings without judgment can help them navigate the experience in a healthy and emotionally supported way.
Use Books to Help Younger Children Understand Dementia
Children’s books can be valuable tools for helping younger grandchildren better understand dementia. Stories often provide language and emotional context that make difficult topics feel less overwhelming and more approachable for children.
A few widely recommended books include:
- The Memory Box: A Book About Grief: While centered on grief and memory, this book can help children discuss memory changes and emotional connection in age-appropriate ways.
- Grandma and Me: A Kid’s Guide for Alzheimer’s and Dementia: a gentle story that is informative for younger audiences about the disease.
- Grandma’s Cobwebs: “A tender story about the special bond between a grandchild and grandmother, exploring how love and memory persist even when circumstances change.”
- The Remember Balloons: A unique take on a boy navigating the realities of his grandfather’s cognitive decline.
- Sizzling Bacon: “A sweet, non-threatening, fantastical story about dementia from the point of view of a child.”
- A Doll for Grandma: “A short, but inclusive tale, (that) captures the main ideas and concepts one would wish to share about the disease and its progression.”
While no conversation about dementia is ever easy, helping grandchildren understand what is happening can reduce fear and strengthen family connections. With honesty, reassurance, and age-appropriate support, children can learn that even as dementia changes parts of their grandparent’s abilities, love, and connection can still remain.
