When a loved one receives a dementia diagnosis, it affects your whole family, including your children. You may not be sure what to tell your kids, exactly. It’s important to communicate with them in a way that’s appropriate for their age and that reflects their relationship with their loved one.
When to talk to your kids about dementia
The first step is to decide when to have your initial conversation. If the person with dementia is in the early stages of the disease, ask them if they would like to be included. “If they want to participate, they can offer information and comfort to the child,” said Amber Ayers, a dementia specialist with Banner Alzheimer’s Institute in Tucson.
It’s time to have a conversation if the loved one’s behavior changes suddenly or if they call a child by another family member’s name. Even if you don’t notice those changes, don’t underestimate kids. “They’re very intuitive,” Ayers said.
What to say to your kids about dementia
Explain that the person has a brain disease, and name the disease, whether it’s Alzheimer’s, dementia or another diagnosis. From there, explain the symptoms, focusing on what the child may have noticed, such as memory loss, the inability to stay organized or forgetting an appointment. “Don’t dumb things down,” Ayers said.
In older children, you may want to share more details, such as the different types of dementia or the area of the brain that is affected.
Give your child space to ask you for information. You can encourage them by asking questions like, “Is there anything you want to know?”
And acknowledge your own feelings—if you are sad, anxious or scared, let your child know. “Sharing your emotions allows your child to express what they are feeling. Don’t assume your feelings are their feelings. Let them tell you what they are worried about,” Ayers said.
How to continue the conversation
Your loved one’s condition will likely get worse. “Keep the lines of communication open so that as things change, you can continue to inform and comfort your child,” Ayers said. “Offer quiet time and space to allow the child the freedom to start a conversation with you.”
Children connect with the symptoms, not the disease. For example, they can relate to forgetting someone’s name or where the keys are, or to feeling a sudden change in emotion that they don’t know how to express. Explain the circumstance or behavior in a way that’s suitable for your child’s age and maturity. And remind them that the person’s behavior is not their fault—it’s a result of the disease.
Age-appropriate books can help foster conversations. Ayers recommends:
- Weeds in Nana’s Garden by Kathryn Harrison (for children under age 7)
- The Dementia Diaries: A Novel in Cartoons by Matthew Snyman (for children age 7 and older)
You may also want to help your child find a support group or online resources where they can connect with other children in a similar situation.
How to maintain a connection between your child and the loved one
Encourage your child to spend time with their loved one. If there’s an activity they both enjoy, create opportunities for them to share it. It can be helpful for both your child and your loved one with dementia to express themselves through art—music, writing, drawing or dancing. And artistic expression can bring up concerns or feelings you can talk about later.
Children, and people with dementia, may enjoy sensory processing tools like pillows, fidget blankets or fiber optic lamps. “Using these tools can help create a connection between them,” Ayers said.
The bottom line
When a loved one receives a dementia diagnosis, it’s hard on the whole family, including children. By talking, sharing feelings and maintaining connections, you can help your child and your loved one manage during this difficult time. If you would like to connect with a dementia expert who can help you communicate with your children, Banner Health can help.
For additional suggestions and guidance, listen to our Dementia Untangled podcast—"Talking to Your Kids about Dementia”.
Other useful articles
- How Smart Home Design Boosts Comfort for People with Dementia
- How to Be an Effective Caregiver When You Live Far Away
- What to Do When You Spot Worrisome Signs of Memory Problems