What to Tell Grandkids When a Grandparent Has Dementia

Meet them at their level: Young children are capable of understanding dementia if you explain it to them in terms and concepts that are familiar to them. For example, Jacob Sermeno, who holds a doctorate in social work and is a licensed clinical social worker, suggests saying: “They are sick. They have an illness. It is called dementia. Their brain is hiding memories [from them]. That is why Grandpa forgets, why Grandma forgets.”

Be honest: When you tell young children that a grandparent is sick, you don’t want them to think that it is a temporary illness. Sermeno says that children need to know that their grandparent won’t get better and will be sick every time they see that grandparent.

Explain what changes to expect: Let children know what sort of changes they might see in a grandparent’s behavior — such as forgetting things, repeating questions, and getting confused or mad. Encourage children to be patient with their grandparent, and let them know it’s OK if their grandparent makes mistakes, but to avoid pointing out the errors because the grandparent won’t understand. If your children don’t see their grandparent frequently, you’ll need to remind them of what to expect each time you visit, Sermeno says. 

Offer reassurance: Aalberts recommends putting a positive spin on difficult situations. For example, she says you can tell children, “Grandma might have a hard time remembering your name sometimes, but that doesn’t mean she doesn’t love you.” It’s also important to let young children know they can talk with you if they are upset, to validate their concerns and to allow them to step out of the room if being around a grandparent with dementia scares them.

Use books: Several books have been written to help young children understand what is going on when a grandparent has dementia. Grandma, It’s Me! by Y.Y. Chan, Nana Nana by Nate Bertone, Grandpa’s Magical Mind by Bre’anna Wilson and Visiting Grandad’s New Home by Virginia Ironside are among the books Aalberts and Sermeno recommend.

Talking to preteens and teens

Conversations with preteens and teens are just as important as talking with young children — even more so if they are involved with caregiving support. Don’t expect them to simply figure out what is going on with a grandparent or even come to you with questions.

Use adult language: You can be more direct with children in this age group. “When it comes to explaining to teens, we start to use adult language because they are going to respond to adult language,” Sermeno says. “Let them know what it exactly is. Specify the illness.”

Explain what is happening: You can tell preteens and teens how the disease will impact their grandparent. For example, if a grandparent has Alzheimer’s disease, you can explain that the disease occurs in stages, starting with the loss of short-term memories, followed by long-term memories, speech and bodily functions. “Give them the whole picture,” Sermeno says. That said, you can tell them a little at a time so they can process the information.

Help them find support: Preteens and teens might not want to open up to parents if they’re having trouble coping with a grandparent’s dementia diagnosis. So, it’s important to make sure they have additional people they can talk with, such as friends, other family members or a counselor, Sermeno says.

Share tips on caregiving: Provide preteens and teens with clear instructions if they are helping care for a grandparent with dementia. Resources such as the Alzheimer’s Association, AARP Family Caregiving and Family Caregiver Alliance offer tips for caregivers.

Give them space to be kids: If preteens and teens are living in the same home as a grandparent with dementia or helping provide care, make sure they have time to socialize or do things they enjoy. “They need it for their own development,” Sermeno says.

Talking to young adults

Conversations with adult children can be more complex. It can be hard for them to slowly lose a grandparent they’ve known all of their lives. “For young adults, it’s the long goodbye,” Sermeno says.

Discuss loss: Michele’s mother-in-law had always been interested in and engaged with her grandchildren, but she withdrew as she developed dementia. “For her to just sit there, it was a hard thing to go through,” Michele says. So, she talked with her children about the difficulty of letting go of a loved one and encouraged them to hang onto the memories they had of their grandmother when she was better.

Celebrate small wins: Help adult children stay positive during difficult interactions with a grandparent by encouraging them to savor positive moments, such as when Grandma does remember their names. “Celebrate the little victories as much as possible,” Sermeno says. 

Share status updates: If young adults don’t see a grandparent often because they are away at college or live in another town, they might be shocked when they do visit and see how much their grandparent has declined. That’s why Aalberts says it’s important to give grandkids status updates on a grandparent with dementia. Tell them what has changed since they last saw their grandparent, she says.

Offer reminders on how to interact: Because his daughters’ visits with their grandmother are infrequent now, Muhlbaum gives them tips on how to speak with her so she doesn’t get confused. “Sometimes they want to talk about their lives in other places — at college, in graduate school,” he says. “I encourage them each time to establish the context of what they’re talking about: ‘So, Oma, you know I’m studying in England now.’”

Discourage baby talk: Often young adults will refer to older people as cute and use baby talk with them, Sermeno says. Caution adult children not to treat grandparents with dementia like they are babies. This message is especially important if adult children have young children of their own, who could regress or act out if they see their parents using baby talk, he says.

Most importantly, remember that conversations with kids about a grandparent who has dementia need to be ongoing. And if you’re ever unsure what to say, heed Sermeno’s advice: “When in doubt, lead by the example you want your child to see.”