When a grandmother suddenly calls a young grandchild by the wrong name, forgets the last time she saw you, or gets uncharacteristically annoyed, it can be confusing, upsetting — and tough to explain.

Here are some strategies for explaining a dementia diagnosis to kids. 

1. Be open with kids about dementia

According to dementia communicator Matthew Adams, the right language can help younger family members understand what’s happening, feel reassured, and work through their emotions about it.

A few years ago, he and his wife launched an online project allowing families to create personalized picture books about dementia, designed to help kids understand the disease, and cope with it.

“While the news that a loved one has dementia may be distressing, children may be relieved to know that the person’s behavior is being caused by dementia and is not directed toward them,” dementia communicator Matthew Adams told Being Patient. 

2. Explain dementia is an illness

Julissa Cruz Gómez, a Dominican doctor in the Netherlands, wrote a book to help explain the disease to her niece. 

In her book “Why Does Granny Forget Things: A Trip to the Brain,” a sister and brother enter the brain of their grandma who has dementia and travels to the different parts of the brain, like the region responsible for memory called the hippocampus, that are affected by the disease. 

Explaining what is going on in the brain can help reassure kids and help them have a healthy relationship with their loved ones who have dementia, she said. 

“If you have this book as a child and you can read and with the guidance of your family, you know in your childhood what you have to do, how you can interact with your grandma or your grandfather or your aunt — with people with dementia,” Cruz Gómez told Being Patient. 

Experts from Banner’s Alzheimer’s Institute also suggest focusing on symptoms in your explanation. Forgetting things, for example, might be more relatable for kids who have probably misplaced toys or other objects themselves. 

3. Encourage questions

Banner experts also recommend encouraging kids to ask any questions that they might have. A child might wonder, for example, whether they could catch dementia by interacting with their loved ones. They might ask if dementia hurts, or if their grandparent will forget them. It is important to be honest with kids and not sugarcoat answers.

If you aren’t sure how to answer these questions, you can check out the Alzheimer’s Association’s “Parent’s Guide,”  or get in touch with your doctor, who might be able to help explain some of the trickier questions.

4. Reassure kids and validate their feelings

Ensure that kids know it is okay to feel scared, anxious, or sad. Asking children how they feel about the situation can help you determine how best to reassure them. 

The Banner Institute team also recommends sharing your feelings and emotions, to show children they’re not alone in their concerns.  

5. Keep the relationship active

Kids can still have a lot of fun and participate in activities with their relatives, even if diagnosed with dementia. Teens can, too. In the earlier stages of the disease, a person living with dementia will still be able to engage in some or all of their favorite activities. 

In later stages, kids can use music, books, photos, and other familiar forms of media to reminisce with their loved ones.  

At any age, there’s a great deal we can learn from our loved ones with dementia. Spending time with one’s younger relatives can help folks living with dementia, too: staying socially active and engaged is an evidence-backed way to stave off cognitive decline.