Dementia can be challenging for families to adapt to, and it holds unique implications for children. Yet with the right strategies, children can learn to understand and relate to people living with dementia in new ways. Explaining dementia to a child can help strengthen family relationships over time and diminish stress for all involved in caregiving. This blog post explores personal experiences of the co-authors when they were children interacting with loved ones with dementia. It will also share potential solutions.
The Challenge of Explaining Dementia
- Lindsay’s Experience. “I was a sophomore in high school when we found out that my Nana had Alzheimer’s disease. I had heard my dad and his siblings whispering behind closed doors about their mother’s forgetfulness, but she still seemed like the same warm, loving Nana to me. My Nana’s disease progressed rapidly after she lost her husband, and we moved her into a memory care unit in a retirement community. I will never forget the first time we went to visit her there. As a teenager, I had limited knowledge about Alzheimer’s, and I was scared to see her. My parents had warned me that her health was declining, and her memory was fading. I didn’t know what to do when we saw her. Could I still hug her? What should we talk about? What if she didn’t remember me?”
- Emily’s Experience. “My great-grandma had dementia and was exhibiting symptoms ever since I could remember. She would often ask me the same questions, and our conversations would feel repetitive. When I was little, I didn’t quite understand why she kept bringing up the same things, but my parents explained dementia to me. And when I was older, I learned more strategies for how to best interact with her.”
Learning that a loved one has dementia is a sad and scary experience. It can be particularly difficult to explain to a child that their grandparent’s health, personality, and memory are changing. The good news is that there are resources and strategies that parents can use to help their children understand dementia. Furthermore, there are communication strategies that children can use to maintain their loving relationship with their grandparent.
Gathering Information: How Dementia Affects the Brain
A human brain contains billions of brain cells called neurons that act as building blocks of the brain. Neurons communicate by sending and receiving chemical and electrical signals to/from other neurons, muscles, and tissues throughout the body. As healthy neurons maintain and strengthen these synaptic connections, they allow you to think, feel, move, and comprehend the world around you.
When an individual is diagnosed with dementia, including Alzheimer’s disease and other types, the neuronal damage is widespread. As a result, neurons stop communicating with one another, losing connections that were once viable and inhibiting the neuron’s ability to repair and regenerate. As these important brain cells continue to wither and die, the brain with dementia begins to physically shrink in size.
In the case of Alzheimer’s disease (the most common type of dementia) the brain region that is typically affected first by the loss of neural connections is the hippocampus, also known as the memory center. From there, damage continues to spread to other parts of the brain responsible for language, reasoning, and social behavior.
Tips and Resources for Parents Explaining Dementia to Children
As a parent, you may find it difficult to explain dementia to your child in an understandable way. Author/Illustrator Kathryn Harrison’s mom was diagnosed with Alzheimer’s disease when her children were young, so she decided to create a picture book to help her kids and others understand the brain disease and encourage their involvement. Harrison’s book, “Weeds in Nana’s Garden”, uses an illustrated story, a garden metaphor, and a Q&A section to explain Alzheimer’s disease and other dementias to children. Using resources that were created with children in mind, including many other children’s books about dementia, may help you start a conversation with the young people in your life. Here are some more tips and resources for help explaining dementia to children:
- The Alzheimer’s Association provides free resources for kids, including short videos that explain Alzheimer’s disease, what to expect, and how to help.
- Remind your child that their grandparent’s heart is still the same, even if their behavior is different. It may be beneficial to talk with your child about the favorite memories they’ve shared with their grandparent and encourage them that they can continue making positive memories.
- Involving grandchildren in the dementia care journey can help the whole family. In the Harrison family’s experience, the kids were more accepting of their Nana’s changes, more focused on what could be gained from their current relationship and less focused on her losses. For example, in the early stages of her disease they discovered their Nana was great at play, and they could have fun together. Later, as their Nana became less mobile and quieter, they learned she was always available for hugs. With age-appropriate strategies, they were able to help care for her, developing their compassion and confidence.
- Suggest meaningful activities for grandparents and grandchildren that are less dependent on memory acuity. This blog post offers great ideas like sing-alongs and reminiscing with old familiar photos.
- Routinely doing things with the person living with dementia can help young children adapt to the gradual changes that are inevitable with a progressive disease. By modifying activities for the person with dementia, you can help everyone participate and feel successful in family-centered activities even as skills and abilities change.
- While spending time together is valuable for children and grandparents, so is time apart, especially for children and grandparents who live together. Try to schedule quality time “just for kids” when they can focus on their own interests with friends, siblings, or a parent—and adults, you deserve the same balance!
- Finally, welcome your child’s dementia-related questions, even if you can’t answer them all! If you need more information or a different perspective on the challenge of explaining dementia, reach out for help. As the number of families dealing with dementia grows, we have more knowledge and expertise together than any one of us has alone.
You may notice your child or teen is acting differently since their loved one was diagnosed with dementia, even if they’re not talking about their negative feelings. Problems at school, with friends, or at home can be a sign that they are upset. A teenager may find the changes upsetting or embarrassing and not want to be around the person.
Based on these stories, tips, and what you’ve tried in the past, do you have at least one new idea to try the next time you respond to a young person dealing with dementia?
- Lindsay’s Perspective. “One way that my parents could have helped explain my Nana’s Alzheimer’s to me was by having an open and age-appropriate discussion. For example, since I was a teenager at the time, I had heard of dementia, but having these communication tips for positive social visits with my Nana would have been helpful. For my younger cousins, a storybook could have comforted them and reassured them that their feelings about the disease were normal.”
- Emily’s Perspective. “As healthcare professionals, we can remember that dealing with dementia is challenging for all family members, but it is possible to have informative and meaningful conversations about dementia with children.”
You’ve likely discovered additional effective strategies from your own experience. Freely share your stories and tips in the comments below. In your opinion, what is it about your strategy that makes it work? I bet we can apply your effective strategy in more than one situation!
Additional Resources if You’d Like to Learn More
If you’d like to learn more about communicating with people living with dementia or adapting care along the progression of the disease, check out videos on our Online Education page or contact us today
By Lindsay Diab, Charli White, and Emily Kron, Occupational Therapy Students, East Carolina University, and Dr. Heather McKay, Partnerships for Health