What to Tell the Kids About Their Grandparent's Dementia
It's a difficult topic, but children need honest answers
When Michele Macomber’s mother was diagnosed with dementia, she reached out for professional guidance about how to discuss it with her 10-year-old daughter.
“I credit this with why my child, who is now 14, is kind and patient with her grandmother, and never scared when Grandma acts or speaks [differently],” says Macomber, of Silver Spring, Md. The advice she got helped her implement many concepts that her daughter has grown up with, such as not to point out Grandma's mistakes if she hasn't noticed them, and doing things with Grandma that she can still do, so she continues to feel capable and included.
Understanding Alzheimer’s or another dementia can be difficult for a child, who expects adult family members to remain unwavering caregivers. But open communication is crucial to maintaining the child’s sense of security and well-being.
Don’t Assume They Won’t Notice Dementia
Hoping to preserve the child’s relationship with the affected family member for as long as possible, many adults don’t tell the children. Instead, they attempt to cover it up with "Grandma’s just being silly," or dubbing questionable behavior as "part of old age." But most experts agree that without solid, direct answers, children will reach their own — often frightening — conclusions. The result is often increased anxiety.
“In most cases, honesty is best,” says Ruth Drew, director of family and information services at the Alzheimer’s Association in Chicago. Drew suggests a basic structure to start the conversation, which you may add to, based on your child’s maturity.
“Tell them [Grandpa] has a disease, it hurts his memory, and makes it hard for him to do things. Assure the child that they can’t catch it. Tell them what they can still do with their loved one, and how they can help,” she says.
Aid their understanding by addressing what the child may be seeing or experiencing, she adds.
“For example, if Grandpa has difficulty with conversations and finding words, tell them that the part of the brain that holds those words is affected. If he often gets mad or moody, use that in your explanation.”
Let your child guide how much they want to talk, and continue to offer truthful, age-appropriate responses as future questions arise.
Help Them Keep a Connection
At some point, you’ll need to explain to the child that some of the things he or she has associated with the loved one — such as baking or going off for ice cream — are no longer possible. Coming up with new ways to spend time together is important, especially as the disease progresses.
“It’s an opportunity to be creative. Think of things the child likes to do, that they can do together: sing a song, recap their day at school, look through photos,” says Cynthia Epstein, a social worker at NYU Langone's Alzheimer's Disease Family Support Program.
Consider ways to simplify tasks they used to enjoy together, she adds. “For example, instead of baking from scratch, perhaps you could use a mix. Focus on the process, not the outcome — if Grandma eats all the chocolate chips, or the cookies burn, it’s OK. Maybe it was chance to laugh together.”
Despite a child's eagerness to preserve their relationship, remember that it’s important to supervise their interactions. Even if the child assures you that he or she is able to take over a favorite craft or activity with Grandma, or offers to watch Grandma or Grandpa when they hear that you’re in a pinch, it’s best to gently decline.
“Allow your child to be helpful, but not responsible,” urges Epstein. “A child should never be put in a position of responsibility.”
Prepare for Hurdles
Someone living with Alzheimer’s or another type of dementia may be prone to outbursts that seem angry or hurtful. While adults can learn to realize that these episodes are caused by the disease and not reflective of the individual’s true intentions, a child may not be able to reason like that. Instead, children may take the outbursts to heart.
Macomber recalls when her daughter was caught in such an incident.
“We were visiting my mother, when she got frustrated and suddenly snapped, ‘You are not my favorite grandchild anymore,’” Macomber recalls. “That was the first time Grandma had directed any meanness toward her, and it really hurt.”
Macomber did her best to reiterate that Grandma would never say anything mean if she could help it. She encouraged continued visits, and soon her daughter came around to realize that Grandma was still Grandma, still sweet most of the time.
Being a role model of behavior for your child can also help, Macomber adds. “She started noticing more when my mother would say mean things to me, and how I either let them go, or gently reminded her that we don't say mean things to people,” says Macomber.
You probably prepped your child on how to act on the first day of school, or on a first job interview. Similarly, you need to offer guidance on how to behave around a person with Alzheimer’s or another type of dementia. An overall message to instill: exercise patience and acceptance.
“We tell people to meet their loved one where they are,” says Drew. “Don’t push them, argue or insist that they remember. It doesn’t work, and it can be disrespectful. For example, if their loved one asks the same question several times, explain that it’s not the child’s fault, but that the part of the older adult’s brain that holds the answer in their memory isn’t working properly. Explain that they should just repeat themselves again.”
Keep the Lines Open
Over time, check back with your child to see how he or she is doing. “Go to the child, rather than wait for them to come to you,” says Epstein. “When they don’t talk, that’s more concerning.”
Also watch for signs of difficulty in your child, such as irritable behavior, avoiding being at home or inviting friends over, difficulty sleeping or having nightmares, or other notable changes in their routine or behavior.
Small conversations — often in conjunction with an activity such as doing dishes or walking dogs — can put less pressure on the child.
“You don’t have to do it all on Day One,” says Epstein. “Talk as needed.”
It’s difficult to witness a loved one’s struggle with a cognitive disorder. But with the right attitude, you can help the children in the family understand the condition and maintain a relationship with their loved one.
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