Helping Children Understand Dementia

“I do remember, and then when I try to remember, I forget.”
– Winnie-the-Pooh

“Why does Nana call me your name Mommy instead of mine?” “How come Grandpa doesn’t know how to use his knife or fork anymore?” “Dad, what’s wrong with Grandma? She called the toaster a counter and tried to toast her apple.” “Oma always gives me a high five and a kiss when I leave. Today, she didn’t. Does she still love me?” “Great-Grandma scares me sometimes. She got really mad at me but I didn’t do anything wrong.” “How come Gramps doesn’t know who I am anymore?” “Mom, today Nana was talking to my doll as if it was real. And she was rocking it back in forth. Isn’t that a bit strange?”

Dementia-related diseases such as Alzheimer’s can be difficult for adults to understand, so how we can possibly explain it to our children? As parents, it can be very confusing to know how much to tell our children about their grandparent or great-grandparent’s disease and what words to use. And for some of us, we might be thinking, “Do I want to expose my child to the stress of watching their grandparent slowly decline and not be able to remember?” This is especially true when our children feel hurt not to be remembered, or scared by a grandparent’s change in behavior.

The reality is that Alzheimer’s and other dementias are terrible degenerative diseases. Alzheimer’s Disease is one of the top ten leading causes of death for seniors and, on average, loved ones live 10 years with the disease.

It’s not a matter of if. It’s a matter of when your children will come head to head with dealing with an aging loved one with dementia.

How Do You Talk About It?

Keep It Real. Alzheimer’s disease or other dementias are simply that – diseases. Even young children can learn that dementia affects the brain and that a grandparent with dementia forgets things and has trouble speaking and understanding others. Books are often a great way to help your child better understand the disease and to realize that their feelings are normal.

Keep it Simple. Paula Spencer, Senior Editor of the Alzheimer’s/Dementia channel uses simple and effective examples to explain Alzheimer’s such as:

“Boppa Charlie has a disease that is sort of like having a tape recorder in your head, but the tape recorder is turned off. When he was younger, the tape recorder was on, so he remembers a lot of things from his past.”

“Are you really good at everything? Well, sometimes people aren’t very good at memory. Sometimes people have problems when they get older – sometimes they need glasses, sometimes it’s a cane or a walker. Sometimes they can’t remember. It doesn’t mean they can’t do anything anymore.”

An older child or teenager is ready for more details and matter of fact answers such as “Nana could wander away from the house and get lost.”

Ease their fears. Because it’s a disease, most children worry about “catching” Alzheimer’s. Even if your child doesn’t ask, reassure them they won’t “catch” Nana’s memory problems from hugging, kissing or being too close. Tell them it has nothing to do with germs. Sometimes children worry that a grandparent no longer loves them because they’ve forgotten their name or called them by the wrong name or confused them with someone else.

Explain that the grandparent still loves them very much but that she/he can’t remember things that just happened, or even the names of people close to her. Grandparents with Alzheimer’s often forget grandchildren’s names, because they’re more recently acquired memories rather than more lifelong and long term relations.

Expect the Good, The Bad and the Ugly. Most of the time, children are caring and sensitive to emotions. But be ready for the moment when your child says, “I don’t like visiting Great-Grandma Jean. It smells funny in her room and all she does it repeat herself over and over again.”

One day, my daughter was sitting beside her grand-friend, Grandma Gen, in bed and directly said, “It smells like poop. Did you toot?” Thankfully, Grandma Gen laughed and we blamed Marmie the Marmot for his gastrointestinal misgivings. But it could have gone a whole other direction.

It’s natural for children or teenagers to feel embarrassed or angry by their grandparent’s behavior. They may even decide they no longer want to visit with their grandparent. It’s very upsetting for a child to watch their grandparent become someone they don’t know. During the late stages of the disease, it’s important not to force the relationship.

Children and teenagers will grieve the loss of their grandparent in different ways on their own time. Encourage them to openly speak about their feelings and help them find ways to accept the disease and how to continue to show love for their grandparent.

Educate yourself and your child. Your children need someone to answer their questions. The more you know and the more you talk about it, the less scared they will (and you will) be.

For more information on Alzheimer’s Disease and other dementias, go to the Alzheimer Society of Canada website.

I’d like to leave you with this quick story about the power of human connection, especially for those with Alzheimer’s Disease.

Last night, my daughter and I went to see Grandma Gen, who is 89 years old with Alzheimer’s and living in a long term care facility. We arrived after dinner and as soon as Carly walked in the front doors about ten residents started calling out to her, smiling and even clapping in her presence. Clapping is often a way someone with dementia expresses excitement and happiness.

Sensing something magical – who doesn’t like to be the star attraction?! – Carly smiles back ever so shyly and goes to each resident and shows them her latest stuffy acquisition, asking them ever so sweetly, “Would you like to pet my Marmie? Isn’t his fur fluffy? You can hold him if you like.” Although in another breath, she also quite harshly reprimanded a staff member for mistaking her marmot for a beaver!

As we walked down the hallway to visit with Grandma Gen, Carly twirled around in her skirt and yelled, “Bye Everybody!” waving and blowing kisses to them all. The residents laughed, caught her hugs, blew kisses back and clapped in pure delight.

For those 30 seconds, it wasn’t about those residents being old or having Alzheimer’s Disease, it was about creating moments of joy and being connected, one human being to another.

It’s not about remembering, it’s all about being.