6 Reasons To Talk To Kids About Dementia

"Our greatest natural resource is the minds of our children" —Walt Disney

My mother's early onset dementia, at the age of 62, affected our whole family; not only the adults, but the children too. There was no escaping it. Everyone was impacted.

For this reason, and many more, I think talking to kids about dementia is very beneficial. In fact, involving kids in our family's dementia experience brought on so much more value than I ever expected. We were left with poignant gifts, despite the hardships.

I want to highlight why it was so important to teach and involve our children when dementia touched our lives.

1. Fear

People with dementia diseases can seem scary to children. They can be angry or loud and can get very frustrated. This is understandable, given the difficult changes they are experiencing. But these emotional behaviors, uncomfortable even for adults, can be especially trying for young ones. Children may even think these outbursts are addressed at them. When my mom would cry out, "Shut up!" if things got a bit loud, it did seem scary to my kids. But through much conversation, we explained that it was the disease, and not the person, that was causing the upset. We found that the more we explained to our children about brain diseases, the more they could openly talk about their fears and cope better. It also meant they were happier spending time with their Nana, to our great benefit.

2. Acceptance

Because my young children hadn't really learned to judge what was "right" or "wrong" behavior for an adult, they were very accepting of their Nana's sometimes "unusual" behavior. And with their acceptance came an ease of the situation. There was less focus on what should have been or what was lost and more of a focus on what was happening in the ‘now'. This acceptance of the present situation enabled all of us to better embrace it! My kids didn't mind when their Nana went for a walk in her pajamas – they would join her. They weren't bothered by their Nana forgetting what day it was. They didn't know what day it was either. My children's acceptance of the behavior was contagious. From their acceptance came our acceptance! And when you are not concerned with judging the situation, the positives are much more apparent.

3. Spontaneity

Thus, it followed that my children were excellent at enjoying the unexpected moments that often came with the illness. Time spent with Nana offered great fun. While I was aghast that my mother was using way too much candy to decorate the gingerbread house, my son watched, giggling. He then followed his Nana's lead, exclaiming, “Let's throw it all on!” Soon a plethora of sprinkles and gum drops spilled to the floor and I could hear squeals of laughter from them both. Of course it was okay to do this! Why did I need to control the situation? My children did not. They liked that their Nana had a freedom to her that was unique. From our conversations, they weren't scared of her but were eager to be part of these moments and it was great for my mom to have their company. No doubt this mutual playfulness helped form a stronger bond and definitely taught us all to have more fun!

4. Creativity

A natural extension of my children playing together with their Nana was a shared interest in creating together. We discovered that my mom really enjoyed the activities my kids liked to do. Their creative outlets were her creative outlets! They were often seen, side by side at the table, concentrating on their own individual projects, whether it be coloring or working with clay or ripping up paper. I'm not sure if we would have uncovered these activities for my mother if we didn't have my children with us. They were ready and craving an opportunity to create. And so also, we learned, was Mom!

5. Teamwork

Caring for a loved one with dementia is better with a team. The dementia patient benefits from all the different styles and caregivers benefit from sharing tasks and supporting one another. Over time, as my kids learned about the dementia disease affecting their Nana and their Nana progressed, their roles changed, but they always remained a key part of the caregiving team. Both children helped picked out clothes and music for their Nana early on. And in the later stages, they helped with many things like adjusting the wheelchair or in bringing their Nana to dinner. They quickly learned that, together with their smiles and energy, they could add even more value directly, easing the experience for all.

6. Growth

What's more, this active caregiver role played by my children was not a burden for them but a gift. For with the responsibility of being part of the team, and from knowing they were making a difference, my kids grew inside! They gained confidence and compassion. My children, even today, many years after their Nana passed, show more empathy and patience towards others than I witness in some adults. This disease taught them to be caring individuals – to be the kind of people we want and need in this world. And for that, I am truly grateful!

Managing dementia diseases is a difficult journey for families. But there is an opportunity to gain from involving children in the process. Let's encourage more kids to take an active role, whether it be through books, conversations or activities.