Helping Kids Understand Alzheimer’s

It was a 5-year-old boy’s question that convinced social worker Elizabeth Smith-Boivin that kids need special help dealing with Alzheimer’s. The boy’s mother visited the 36-bed adult center that Smith-Boivin runs in Saratoga, New York. The woman needed a place that would care for her mother, who had Alzheimer’s. But she told Smith-Boivin, now a director on the national board of the Alzheimer’s Association, that the hardest thing about placing her mom was that her children were so distressed about “Nana” leaving.

The children went later to check out the center. At the end of the tour, the 5-year-old looked up at Smith-Boivin and said, “My Nana likes to have a chocolate milkshake every day. Is that something you could do for her here?”

Forgotten Victims

Smith-Boivin was so moved that she began referring to children as the forgotten victims of Alzheimer’s disease, and then developed teaching materials for them. “We get so busy in the day-to-day work of caregiving she says, “we forget that there’s all these little guys out there that are affected.”

The kids most deeply affected are those who live with an Alzheimer’s patient–usually a grandparent, but sometimes a parent. It is uncertain how many kids live in this situation. But an estimated 3 million of the 4 million people in the United States who have Alzheimer’s are being cared for in homes–often the homes of their children, surrounded by grandchildren.

A Broken Brain

“Kids need a good understanding of the wide range of damage that this disease produces,” Smith-Boivin says. When she’s teaching groups of young children about the disease, she has them list five injuries people they’ve known have suffered. The list often includes broken arms and broken legs. Next, she explains that a person with Alzheimer’s has a broken brain. “Then we talk about Grandma and Grandpa not being able to safely cross the street anymore, just like if you have a broken arm you can’t swim.”

After one particular meeting with several kids, Smith-Boivin says, a 7-year-old walked up to his mom and said, “I don’t think you have to worry about Grandma any more. She has a broken brain.” Smith-Boivin translates this to his saying, “This is okay–we’ll just keep taking care of her.”

To help explain exactly how Alzheimer’s can damage the brain, Smith-Boivin says she uses colored blocks to represent different brain regions–white for the communication center, red for memory, blue for judgment. “I explain that this disease affects all of these areas, some more than others.”

Questions Kids Ask

Once kids understand how Alzheimer’s affects the brain, experts say, they have the answer to their most frequently asked question about the disease: “What’s wrong with Grandma or Grandpa?”

But there are other questions, tougher ones: “Is my mom or dad going to get it? And am I going to get it?” Jan Oringer, a nurse and family therapist who works as a clinical consultant for Family Caregiver Alliance in San Francisco, California, suggests assuring the child that you and the child are fine, that you hope this doesn’t happen to any of you, and that if it did it would be a long, long time from now, when you’re very old.

Smith-Boivin has a different approach. “I usually tell kids that I really believe in my heart that by the time their mom or dad gets as old as their grandmother or grandfather that we are going to have a cure for this disease.”

Teens Embarrassed

For teenagers, embarrassment is one of the biggest problems. Many refuse to bring their friends home. They’re afraid the friends will ask about that crazy old woman who keeps asking the same question over and over, or that dirty old man who takes off his clothes in the living room.

According to Mark Fieldson, director of Family Services for the John Douglas French Center for Alzheimer’s Disease in Los Alamitos, California, “Teenagers aren’t quite mature enough to explain it to a friend and figure the friend will understand.”

The fix, says Fieldson, starts with showing sensitivity to the teen. “Supervise the person with dementia a little more closely when the teen has a friend over. You show the teenager that you understand and try to help avoid some of the embarrassment.” Fieldson says you also need to educate your teen about the importance of telling their friends what’s going on. If they do this, he says, they won’t be so nervous during the visit, or as ashamed if something happens.

Smith-Boivin says she tells teens that millions of families have a loved one with Alzheimer’s, and perhaps their friend is a member of one of them. And even if that proves to not be the case, she says, educating even one person about this disease helps make the world a better place.

Making Kids Number One

“I often feel the need to give parents permission to make their children the number-one priority,” says Fieldson. “It’s very easy for family caregivers to be overwhelmed, neglecting the needs of the children as they tend to the daily responsibilities of caring for the grandparent.”

Be alert to changes in the behavior and attitude of your kids, the experts say. This is a clue that they’re struggling with a problem. And keep the doors of communication wide open. Ask questions. Assure them that it’s okay to sometimes feel overwhelmed by a jumbled-up mess of feelings: shame, guilt, and anger, to name a few. But remind them that one of the healthiest ways of dealing with those feelings is to talk about them with someone who cares. Someone like you.

Article By: Stephen Miller, Medical Writer