7 Reasons why it is so important 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.
Today I want to highlight why it was so important to teach and involve our children when dementia touched our lives.
- Fear – People with dementia diseases can seem scary to children. They can be angry or loud and sometimes get very frustrated. This is understandable, given the difficult changes they are experiencing. But these emotional behaviours, 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!” when 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 frustration and the upset. We really 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 much more open to spending time with their Nana, to our great benefit.
- Acceptance – Because my young children hadn’t really learned to judge what was “right” or “wrong” behaviour for an adult, they were much more accepting of their Nana’s sometimes “unusual” behaviour. 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 pyjamas – 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 behaviour was contagious. From their acceptance came our acceptance! And when you are not concerned with judging the situation, you can see the positives much more easily.
- 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 for my kids. While I was aghast that my mother was using way too much candy to decorate the gingerbread house and tried to intervene, my son watched, giggling. He then followed his Nana’s lead, exclaiming, “Let’s throw it all on!” And as a plethora of sprinkles and gum drops spilled to the floor, 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 camaraderie. No doubt this mutual playfulness helped form a stronger bond that lasted as the disease progressed and definitely taught us all to have more fun!
- 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 relaxed and 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 colouring 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!
- Teaching Us – Everyone talks about role reversals for dementia families; how the grown children switch with their parents in being their parent’s caregivers. But what I hadn’t expected was that my children – the grandchildren – were very much teaching us, the adult children, too. Their lessons in acceptance, having fun and being creative taught us how to better manage the often uncontrollable situations. They taught us to flow with the constant change. They taught us to love not judge. These lessons made me a better caregiver and cemented them as a very important part of the caregiving team.
- Teamwork – Caring for a loved one with dementia is better when many people help. 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 mechanical bed or 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.
- Growth – What’s more, this active caregiver role played by my children was not a burden for them but really a gift. For with the responsibility of being part of the team, and for knowing they were making a difference, my kids grew inside! They gained confidence, wisdom and compassion. My children, even today, more than 5 years after their Nana passed, show more empathy and patience towards others than I witness in many 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!
After learning firsthand how much value mixing children with the dementia experience can bring, I wanted to find ways of encouraging more kids to play a part. My solution was to create a children’s book aimed at explaining Alzheimer’s Disease and other dementias in an approachable and easy manner.
Inspired by my daughter’s observation that the disease in her Nana’s brain was like the weeds overtaking her Nana’s garden, I released “Weeds in Nana’s Garden.” This illustrated book uses a garden metaphor and a loving story to help explain dementia diseases. It is currently available online globally in English and will soon be offered in other languages too, so it can be accessible to even more people.
I believe this book will help many children understand what is happening with a dementia disease so that they feel more comfortable, compassionate and encouraged to connect with individuals with dementia. I have such respect for caregivers and if this book can support them and their families even just a little bit, it will leave our family, and the memory of my mother, with another important gift from this difficult journey.
Wishing you much strength and love.
This blog was produced by Kathryn Harrison and can be contacted directly on firstname.lastname@example.org