Alzheimer’s disease and other forms of dementia are difficult for most adults to discuss. Now consider how challenging it would be to talk about the topic with a child.
Alzheimer's is the sixth leading cause of death in the United States, and 1 in 3 seniors dies with Alzheimer’s or another form of dementia, according to the Alzheimer’s Association.
If you or someone you know is dealing with Alzheimer’s, consider sharing insight from Maria Shriver, co-executive producer of the 2009 HBO documentary series “The Alzheimer’s Project.”
In “Grandpa, Do You Know Who I Am? with Maria Shriver” — one of the films in the series — several children tell stories about how they are coping with loved ones living with Alzheimer’s. Shriver also discusses five lessons everyone should consider when talking with children about the disease.
Lesson 1: There are no silly questions about Alzheimer’s
Shriver remembers how difficult it was to talk about the disease when her father, Sargent Shriver, founding director of the U.S. Peace Corps, was diagnosed with Alzheimer’s in 2003.
“This was a disease that nobody wanted to talk about,” she said, noting it’s important to be straightforward with children. “I think the more families sit down and have these open, honest conversations where everybody can say, ‘I don’t know what’s around the corner; I’m scared; I’m worried’; and can air their questions, that’s empowering.”
Lesson 2: When it comes to Alzheimer’s, just go with the flow
Shriver said she learned how to deal with her father’s Alzheimer’s by watching her children interact with him. She said they were so good about living in the moment.
“It’s out of your hands. You are not in control,” she said. “You must deal in the present, in the now, with the person who is sitting right in front of you.”
Lesson 3: It’s OK to be afraid of Alzheimer’s
The thought of one day losing all your memories is frightening for anyone to think about, Shriver said.
“It’s really important to encourage kids not to be afraid when they’re around someone with Alzheimer’s, but there’s always that moment when you have to let it sink in that your mother, your father, your grandma, your grandpa doesn’t know who you are. I don’t think anybody gets used to that.”
Lesson 4: Sometimes it’s the disease talking, not the person
“I think it’s really important for all of us who love somebody who has Alzheimer’s to remember that when they get angry, or when they try to strike out, or when they don’t talk to us that that’s not them,” Shriver explained. “It’s the disease that’s doing that. And that there’s nothing that you did or I did that would cause that. That’s Alzheimer’s doing its work.”
Lesson 5: Children can be the keeper of memories
“If you have a grandma or grandpa who has Alzheimer’s, there are a lot of things you can do to learn about him or her,” Shriver said. “Get out a video camera. Go through a scrapbook. Make a scrapbook. Anything you do will be an added bonus.”
To learn more, or to get additional materials to share with friends or family, visit the Alzheimer’s Association’s® kids and teens web page. It features age-appropriate videos for children and tips adults can use when talking with kids about the disease.
Things to Consider:
- Make a memory book with kids to help them understand and remember who grandpa or grandma was before the disease began affecting their brain.
- Be flexible and deal in the present.
- When talking to someone with dementia, get their attention by using their name, speak slower, use simple sentences, and don’t try to ask too much at once.