Navigating Dementia with Kids: A Guide for Explaining and Supporting Them

Dementia is hard to understand for adults, so it’s no surprise that it’s confusing for children and teens. If a loved one in the family has been diagnosed with dementia, you as a parent may wonder how to address the situation with your children. They may ask questions you’re not sure how best to answer, or witness behavior changes in their loved one that confuse or scare them. In this guide, we’ll help you understand how to explain dementia and Alzheimer’s disease to children and young adults in both an empathetic and age-appropriate way. Let’s dive in.

Factors to Consider

Every child will react differently to the diagnosis. Factors that will affect their reaction or ability to adapt to the situation include:

Your child’s relationship to the person affected (is it a grandparent, parent, friend, etc.?)
How close their relationship is
How often your child sees them
Where they live (do they live with this family member, or do they suddenly need to move into a care facility, for example?)
How the dementia progresses and changes the affected person’s behavior
The child’s age (are they a young child or a teenager?)
Etc.

Common Reactions to the Diagnosis

While we already stated that every child will react differently, there are common reactions you can learn and prepare for ahead of time. This list comes from Alz.org and includes:

Sadness. Sadness is an emotion that nearly everyone affected by dementia will feel at some point, including your children. They’re also watching their loved one change in front of their eyes and may not be able to reconcile it with the person they felt they knew.
Confusion. They may feel confused about the fact that their loved one isn’t remembering stories or even who they are.
Worry. They may worry about how their loved one became affected by dementia or Alzheimer’s, or fear they too could contract it.
Frustration. Managing dementia and Alzheimer’s disease requires a level of patience that many children have not yet developed. They may feel frustrated about having to repeat stories and questions, or needing to duplicate actions for their loved one. They may also feel that they’re having to spend too much time dedicated to their loved one.
Guilt. Some children feel guilt over the fact that they don’t want to spend time with their loved one as much.
Fear. Dementia is not just stuck in the brain. It often manifests as undesirable actions, outbursts, changes in personality and mood, etc. These swings and behavior patterns can be startling or frightening to small children. They can also make it hard for them to understand how they’re supposed to behave around the affected person.

For older children

Jealousy. If your child starts feeling as though they are making a lot of sacrifices on behalf of their loved one, such as mom or dad missing sporting events or not being able to visit friends as often, they may feel jealous of the time and attention their loved one is receiving.
Embarrassment. Especially as children age into their teen years, they may feel embarrassed to have friends over, for example, if their loved one lives with them and has erratic behavior tendencies.

Any and all of these reactions are completely normal for both children and adults. But teens and young children tend to feel more unsure about how to communicate these feelings. This may cause them to bottle up these emotions and/or feel ignored by those around them.

How You Can Help Your Child: Explaining Dementia and Encouraging Healthy Coping

Here are some things you can do to help your child understand dementia or Alzheimer’s disease and cope with the changes better.

Answering Questions Honestly

The first and most important thing you should do for your child is to explain and answer questions with honesty. But this doesn’t mean that they need all of the details to every question. Instead, you can answer honestly with the level of information they’re capable of understanding.

For example, when explaining dementia to a young child, you can explain that it is a disease that changes the way the brain and body work together. Over time it affects the way the person acts, thinks, and remembers. It’s also important to let them know that these changes don’t affect how much their loved one loves them. Instead, it changes how they show it. They may need more help than they used to, but that doesn’t change who they are as a person.

This explanation could be also used to explain different behavior changes to the child. For example, if their uncle starts calling them by their mother’s name, you can explain that their brain is making it hard to keep things straight. This just means that there’s a resemblance, (which may or may not be physical) that’s triggering the wrong memory. Because his brain is such a confusing place for him, it’s important not to correct him because that might make him upset and even more confused.

Alzheimer’s.org has a great breakdown of questions your child may ask and how to best respond to them which we have linked for you here.

Coping Tools and Tips

Here are some tools you as a parent can use to help your child or teen cope with these changes.

Communicate openly honestly and often
Try not to sugarcoat, as that can harm their trust if their reality does not align with what you’re saying
Get them a journal and encourage them to talk and express their feelings
Get ahead of changes by explaining the disease progression so they know what to expect
Communicate with other people in their lives, like their teachers, so they know what may be causing any behavioral changes they see in class and give them the best way to communicate those changes to you
Check out alz.org/kids for more kid-specific information

Closing Thoughts

Dementia and Alzheimer’s are confusing for everyone. Children are no exception. If you are the parent or guardian of a young child or teen coping with the effects of dementia, educating yourself on what they may be experiencing is one of the best things you can do for them.

If this topic interests you, we invite you to check out our library of free resources. We specialize in making resources known and available to California’s millions of family caregivers. Contact us at the California Caregiver Resource Center nearest to you or join CareNav for free today.