Dementia-related diseases such as Alzheimer’s can be difficult for adults to understand, so how can we possibly explain it to our children?
Young children might ask questions similar to, “Dad, how come Nana doesn’t know who I am anymore?” or “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?”
As adults, it can be very confusing to know how much to tell 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 behaviour.
Alzheimer’s Disease is one of the top-10 leading causes of death for seniors and, on average, loved ones live 10 years with the disease. The reality is that Alzheimer’s and other dementias are terrible degenerative diseases.
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.
Remember, it’s a disease. 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 a great way to help a child better understand the disease and to realize their feelings are normal.
The Alzheimer’s Society has some good resources at www.alzheimer.ca/english/care/children.htm.
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.
Also, explain to children that the grandparent still loves them very much but that s/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 is repeat herself over and over again.”
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.
Wendy Johnstone is a gerontologist and is the founder of Keystone Eldercare Solutions. Her column runs in the Comox Valley Record every second Friday.