Talking to Teens and Children About Dementia

Our Guest Blogger, Rachael Wonderlin, MS, is a dementia care consultant living in Pittsburgh, PA. She runs a blog, Dementia By Day, and wrote a book called, “When Someone You Know is Living in a Dementia Care Community,” published by Johns Hopkins University Press.

Talking with anyone about dementia is difficult. Speaking with children and teenagers on the subject, though, can be extra challenging. Families may feel as though broaching the subject of a grandparent’s cognitive impairment is impossible: how can such a young person really understand? Fortunately, there are a number of resources available to younger people who need to learn about dementia caregiving. Let’s review some tips that may help families better their dementia-positive communication with younger people.

Children
There are a surprising number of books about dementia available for a younger audience. A quick Google book search on this subject matter reveals that many families are probably struggling with the same feelings on how to educate children about a difficult group of diseases. Joshua Freitas’ new book, “Joining Grandma’s Journey”, is a story about a young boy whose grandmother has dementia. When his grandfather goes to the hospital for hip surgery, his grandmother moves into his family’s house for extra care. Other books, such as “Grandma and Me,” written by an RN and a PhD-level Psychologist, or “What’s Happening to Grandpa?” by well-known philanthropist Maria Shriver, are dedicated to educating younger audiences about what their loved ones may be experiencing.

When I worked in assisted living, I would often take my residents to visit a local preschool. We consistently had a wonderful time reading to preschool children, all of whom welcomed my residents with (literally) open arms. Most of the kids were between two and four years old, and, I believe, had no idea that any of my residents were cognitively impaired. I was always amazed by how easily my residents bonded with the children, and how quickly their impairments seemed to melt away: it seemed as though this “judgment-free zone”—playing with children—made it easier for my residents to relax. I found myself wondering if, in our adult world, they struggled to fit in. Here, though, in a child’s world, there was much less pressure to act and speak in a way that didn’t convey their impairments.

Educating young children about dementia may be easier than you think. There’s a certain level of acceptance that very young people seem to have for the world, and I believe that, sometimes, children may be more accepting of someone else’s impairments than most adults are.

Here are some tips we may want to use when broaching the subject with a child:

• Explain that their loved one living with dementia still loves them but may sometimes act in a strange way.
• Provide examples of behaviors that you’ve seen, such as how grandpa talks about things that happened years ago as if they are happening now, and explain how this is normal, and okay.
• Encourage children to continue playing with their loved one.
• Encourage children who like to give and receive hugs to continue giving and receiving hugs.
• Remind them that their loved one is still the same person they always have been, but sometimes that person seems to get “hidden” by the disease that they have.
• Encourage open discourse about their loved one’s cognitive impairment with the rest of the family. If they feel scared or confused, encourage them to come and talk with you.
• Remind them that if their loved one asks, “Who are you?” it doesn’t mean that they’ve been forgotten. It just means that their loved one thinks it’s a different year than it actually was, and they probably weren’t born yet.

Young adults

Young adults may actually have a harder time understanding dementia, as they have to live with it in a much more realistic way than children do. Young adults may realize that their loved one’s disease is terminal, and this brings about fear in a way that it doesn’t for children. I will say, though, that I’m regularly impressed by young people who comment on my blog and message me directly: I frequently get messages and questions from teenagers who want to understand a grandparent’s experience with dementia. Sometimes, I even get messages from a young adult who has a parent with early-onset dementia (where the disease starts before the age of 65.) Some of the teens that message me actually tell me how their experiences make them want to work in geriatrics, much like I do. “How do I do what you do?” a few have asked me.

Here are some tips we may want to use when broaching the subject with a young adult:

• Explain what dementia really is: a group of symptoms caused by different brain diseases, often terminal. Although it seems overwhelming, it’s better to let them hear the information from you instead of giving them the chance to head straight to the Web for a detailed Google search.
• Encourage them to learn more about their loved one’s disease by searching online, but make sure they talk with you about what they’ve learned. Some of it may not be accurate!
• Remind them that the things their loved one says or does is due to their disease.
• Join a support group or attend an educational event together.
• Let them know that you don’t have all the answers, either. It’s great that you can both learn about dementia together.
• Find ways to communicate better with your loved one with dementia—but do it together. People learn better when they experience, try, adjust, and challenge themselves with new concepts.

Communicating with young people about dementia doesn’t have to be scary. Many times, they are open to the information you want to present. We can easily find ways to make it as digestible as possible.