Feature Story

Alzheimer's disease is a Family Affair

"Sometimes Grandpa just seems mad at me," says Lilla, who continues to have a close relationship with her grandfather even though he has Alzheimer's disease. It is a difficult disease for children to understand.
"We don't want the girls to be upset and afraid around their grandfather," says Virginia Carpenter, mother of Lilla, 8, Jylelle, 11, and Jenna, 13. "That's why it is so important that we talk to the kids about Alzheimer's disease."

"There are a lot of kids affected by Alzheimer's disease and the number is rising," states Joanne Bracken, Executive Director for the Alzheimer Society Of Saskatchewan. "One of our goals is to create a generation of compassionate young people better able to understand the disease." Like many Alzheimer Societies across Canada, the Saskatchewan Society has created an education program for school children that focuses on the importance of maintaining relationships with people who have Alzheimer's disease. It also gives children the tools and advice they need to better interact with people who have the disease.

The Alzheimer Society Of Saskatchewan has developed the Just 4 Kids section on their web site, which is designed to complement the in-school program and helps children everywhere understand and cope with the affects of the disease.

"The web site contains tips and basic information that are good for everyone," says Virginia who used the Just 4 Kids section to help her children understand what is happening with their grandfather. In particular, her oldest daughter Jenna uses the communication skills that she has learned at Just 4 Kids. The web site also helped the girls learn how they could explain the disease to others. This has been important because the girls' friends are welcome in their grandparents' backyard pool. The girls have educated their friends in order to explain how the disease affects their grandfather's behaviour.

"I try not to feel bad when he says things that sound mean," says Jylelle. "I really try to remember that he doesn't mean it."

"He recognizes Grandma, but he doesn't know who you are," reminds Virginia. "You would likely act the same way if you thought strangers were in your house eating your food," she explains. Explaining the disease in a way that the girls can relate to improves their understanding and empathy for their grandfather.

Even so, the realities of the disease can be very difficult. "I tell him I love him as I am saying good bye, like I usually do," remembers Jenna. "But he usually does not say he loves me back. That is really sad, but when we talk about it in the car on the way home I feel better," she adds smiling.

Initially the girls would cry if Grandpa was cross or didn't remember them. "Now they seem to look forward to sharing what happened during our drive home and sometimes we are able to laugh at something that was said," says Virginia. In that way the girls are able to let go of the hurt. "Some of it can be pretty scary," explains Virginia. "Laughter helps make it a little less scary."

Virginia is quick to acknowledge that laughter may not always be appropriate, but for now it is helping them. "We are in no way trying to belittle the seriousness of the disease," explains Virginia. "We feel we have to keep a degree of humour for as long as possible. We know that our family has a difficult journey ahead."

Another thing that seems to help the girls cope is raising money and awareness for the Alzheimer Society. They have participated in the Alzheimer Society Of Saskatchewan's Forget-Me-Not Walk for three years. Each year they have put a team together consisting of friends and family members. Jenna is always in charge of writing the team cheer and Virginia usually takes charge of creating the team costume. Last year the girls' team, The Puckheads, won the top fundraising team honours for the Regina walk.

"They understand how important it is to support the Alzheimer Society," says Virginia. "Not only does the Society provide information and support to help us deal with the day-to-day challenges of the disease. But we want to support research to find a cure or better treatments for the disease."

"While we understand the impact Alzheimer's disease has on older people – those who have the disease and their caregivers – there is often little attention paid to the impact the disease has on children," reminds Joanne Bracken. "Yet we know that experiencing Alzheimer's disease through a child's eyes can be frightening and confusing; especially if the person who has the disease is a close relative such as a grandparent or parent."

Despite the progression of his symptoms, Jenna points out that she makes sure she talks to her grandfather each visit and when she leaves she hugs him and tells him that she loves him. "He probably still needs a hug everyday just like the rest of us, maybe even more so," she adds displaying the tremendous compassion that is possible when children have an understanding of Alzheimer's disease.

After this story was written – sadly the children's grandfather Dean Boesch passed away in May, 2008. The family will miss him greatly and agreed to publish the story as an inspiration to other families dealing with this often difficult disease.