Care Partner Information Sheet

Dementia - Helping Children Understand Dementia

Many people who care for someone with dementia also have young children or grandchildren. Children may bring joy for the person with dementia, and dementia may become a normal part of the child's life. But at times it can also be scary. Adults often think that children do not notice the changes with dementia, or the stress of caregiving. But they do. Talking about dementia can help children to understand and not be afraid of dementia. Below are some tips to help talk to children about dementia.

Be Prepared

Being a dementia expert is not needed. Start by learning the basics about dementia, then prepare what to say to the child. If they have questions, it is okay to look for the answers together. The Alzheimer's Association has up-to- date facts that can help. Visit the Alzheimer's Association website, or call the local Alzheimer's Association office.

Be Simple

Use words and ideas that are easy for the child to understand. Match the level of information with the child's age and maturity. There is no need to explain everything about dementia.

Be Truthful

It is important to tell the child that the person with dementia will not get better. Be honest about the changes that are happening.

Focus on the Present

Focus on helping children to understand the changes happening now. Do not tell them about possible things that can happen in dementia. This can worry a child for no reason.

Be Comforting

Children rely on adults to take care of them. It may be scary to see an adult who can no longer take care of themselves. The child may be fearful about other adults losing the ability to care for them. Let the child know that they are loved and cared for. Let the child know that the person with dementia can still love them and enjoy spending time with them - even when the disease may cause the person to say or do things they do not mean.

Be Emotional

Dementia is not a normal part of aging. It is a hard disease, and it is normal to feel a lot of emotions when a loved one has dementia. Most people who have a loved one with dementia feel sad, confused, worried, or scared. Sometimes adults think they should hide these feelings from children to not worry them. But hiding feelings teaches children to hide their own feelings. Neither dementia nor the feelings that come with it are shameful. Adults should share how they feel with the child, and ask the child to share their own feelings Let them know it is okay to feel how they feel. Then help the child to find ways to feel better.

Be Aware of how the child is coping

Even with understanding, children may be stressed by dementia and dementia caregiving in the family. Below are some signs the child may be having a hard time coping. A family member may live with dementia for many years. As such, children could be around a family member with dementia from when they are a toddler until they are a teen. In these cases, the disease gets worse as the child gets older. It is a good idea to have many different conversations over time as the symptoms of dementia get worse and the child gets older.

Ways children may show stress when a family member has dementia

  • They do not want to join family gatherings
  • They start having a hard time with school work
  • They do not want to bring friends home
  • They have sudden changes in social activity, eating and sleep habits
  • They easily get angry or start crying
  • They do things to harm themselves
  • They feel responsible for the care of their family member

Useful Resources:

Written By: James Fitzpatrick, MAS, Alzheimer's Association