Elizabeth Owens-Schiele is a veteran Chicago media professional, current associate publisher of Luckbox magazine and freelance news writer for Chicago Tribune.
Telling children their grandmother is suffering from dementia is not only scary for the children, but also difficult for the adult delivering the message.
That message must be sensitive and age appropriate, experts say, with details on what children can expect to witness and how they should respond to it.
“It’s good to be honest with kids in a developmentally sensitive way,” says Miller Shivers, PhD, child psychologist at the Ann & Robert H. Lurie Children’s Hospital of Chicago. “It’s important to name what it is. Don’t say Grandma has this crazy thing; say she has dementia.”
Alzheimer’s disease can be present in the brain 10 years before symptoms show. In the early stages of the disease, individuals are typically independent and seek love and support from family members. During the middle stages, the individual grows less communicative, and safety concerns increase. In late stages, Alzheimer’s affects eating, mobilizing, and living independently.
A complex disease, dementia can be explained simply, particularly to younger children, with familiar language and concepts — key to protecting their own mental health and setting expectations that protect their loved one as well.
Familiar concepts
Melanie Adams, senior director of education and community volunteers for the Illinois Chapter of the Alzheimer’s Association, offers one example of an explanation. “There’s a little tape recorder in our brain called the hippocampus. That’s where our new memories are recorded. Sometimes, that tape recorder stops working because we have a disease.”
If Grandma only remembers a long time ago, when that tape recorder was still working, “ask Grandma what it was like when she was young,” Adams says, continuing the example. “We don’t want to ask Grandma about things that just happened because she has a disease.”
However, forgetfulness isn’t the only dementia symptom children should be aware of. Shivers recommends parents or trusted adults find a way to explain that Grandma might have mood swings, too.
“You might see Grandma happy. Then she seems really upset. These are normal things that go on with dementia,” Shivers says, adding that less information is often more. “She’s still Grandma, and she loves you. She’s going to be changing, so she might look and be different to you. If you have feelings about that, you can talk to me.”
The most important step is to be honest, and explain the situation in a matter-of-fact way, Shivers says. Then, follow the child’s lead. Be available for questions in that moment or later.
Also, really listen to what the child says, Adams says. Be sure to use their words to explain the disease and what’s happening.
Accepting emotions
Parents know best what information their children can process. But it’s also important to offer guidance on how to treat the family member with dementia.
Shivers suggests encouraging the child to be patient with the person. Tell the child things like, “You’re going to have to be more patient with her. She might forget things [or] be slow with things, and it’s going to be frustrating. If you start feeling frustrated, walk away. Have someone else have a turn.”
“She’s still Grandma, and she loves you. She’s going to be changing, so she might look and be different to you. If you have feelings about that, you can talk to me.”
Parents should acknowledge that their loved one’s dementia may frustrate or upset them, too. Explain to children that they may see their parent mad, upset, or crying when they interact with their loved one with dementia — all normal emotions that children shouldn’t be sheltered from, Shivers says.
Parents also may struggle to keep their own emotions in check as they describe their loved one’s dementia. Wait for a time that feels less vulnerable, Shivers says. Have the conversation in a neutral space, or have another family member describe the situation to the child. If parents get teary-eyed, they should own it. Explain to the child that they are also adjusting to the way Grandma is now.
Adams says the most important step is talking about dementia openly — what everyone is seeing and what they’re feeling, making sure everyone feels supported, including the family member with dementia.
“No. 1, we want Grandma to feel respected. We don’t want her to feel embarrassed,” Adams says. “We can remind her in very gentle ways and help her still feel like an adult.”
Children should come away from the conversation (or conversations) understanding that family members with dementia can’t help the fact that they have this disease and that it’s frustrating for them as well. Older children, who can better understand the cognitive changes, can try empathizing with the afflicted family member.
“Focus on how they’re feeling, not the words they are saying,” Adams says.
As the disease progresses, it becomes increasingly difficult for the brain with dementia to focus. As a result, family members should help control the environment by keeping the dog away, turning off other media when talking with Grandma, and sitting directly in front of her.
“We can connect by holding her hand, introducing ourselves, talking louder and slower so she can have a good visit with us,” Adams says. “Our body language can offer love and connection.”
She adds, “We have to help young children to remember that as frustrating as it is for us, it’s more frustrating for the person with the disease,” Adams says. “We always have to show love and respect. We just need to be creative sometimes.”
