Dementia in my family

Communicating with a child about dementia

Children are particularly perceptive to changes in their family, especially when there is difficulty. They are exceptional at perceiving sadness and distress in their parents and other adults in the family.

Children are also quick to blame themselves for distress in a parent. In the absence of an adult being able to explain to them that it’s not their fault, children will almost always assume that somebody is upset because of something they did.

It is really important to communicate with children about somebody in the family having dementia, because without this, the child may assume that people in the family are upset because of something the child has done. Likewise, as care requirements change, a child may misinterpret the reason for this. For example, if a parent is now required to assist a grandparent with shopping on Saturday mornings, when they used to take their child to sport, the child may interpret this change as ‘my parent isn’t coming to my sport because they don’t love me as much anymore; I must have done something wrong’.

Providing children with information and understanding about dementia and what will change as a result allows them to make sense of the new situation. They are less likely to imagine reasons for the changes and fill in the blanks themselves. Children are often more resilient than we think. They can often handle challenges with their tendency for black and white thinking.

Many parents find it helpful to start the conversation with a young child using a story book. There are many books for children about the relationship between a child and a family member with dementia. These books can be read by a parent and a child together and followed by a discussion about your family member having the same illness as the person in the story.

Generic books about illness, change and death can be helpful for children too. Even if the book isn’t about dementia, it can be a helpful conversation starter. You will find links to suggested reading in our resources section.

Parents of older children often find it helpful to start the conversation with a reference to a change the child might have noticed in the person. For example:

Adult: “You know how dad has had to stop driving? Well, that’s because his doctor has told us that he has an illness called dementia.”

Providing an example to explain a recognisable change is a great way to help a young person make sense of what’s happening.

Children are less likely to be affected by the negative connotations associated with terms like ‘dementia’ or ‘Alzheimer’s disease’ than adults are. If they are hearing it for the first time, it really is just another word. For adults, these terms might conjure up all sorts of difficult images and thoughts. For children, this is not usually the case.

It is best to use simple, honest and consistent language with children.

An example of this might be:

Adult: “Grandpa has got an illness called dementia.”
Child: “What does that mean?”
Adult: “It’s a type of illness that means his brain isn’t working properly anymore. And because his brain isn’t working properly anymore, it means that there are some things he can’t do anymore, or some things that he is doing differently now”.

The above example is providing a name for the condition. This can then be referred to when particular symptoms occur in the future and need to be explained to the child, for example:

Child: “Why does grandpa keep thinking I’m in Grade 2? I’ve told him I’m in Grade 4.”
Adult: “That’s because of his dementia. It affects the way his brain remembers things”.

You might be surprised by some of the big questions that children ask when they learn that someone in the family has dementia, or any major illness. For adults, the questions might seem selfish, or inappropriate. However, it’s normal for children to be focused on how things impact them directly. The following is a list of common questions:

  • Will I get it too?
  • Can I still have my birthday party this weekend?
  • Am I going to have to share my bedroom when Nan moves in?
  • Will he still come and watch me at athletics?
  • Is it like cancer?
  • Will she forget who I am?
  • Will he/she die?

It is important for children to know that dementia is not contagious. They don’t need to worry about ‘catching’ the condition from their loved one. Similarly, genetic forms of dementia are incredibly rare. Most families will not have to explain genetic risks to children. However, for the small minority that have been informed that there is a genetic link in the family, specialist genetic counselling services exist to provide support and guidance for managing these discussions.

Explaining progression is useful to children, so that they can be prepared for what lies ahead. It might help to inform them that ‘doctors don’t yet know how to make dementia go away, and people’s brains get sicker and sicker with time’.

Use of nature analogies can be a helpful way to talk about death and dying. Children often understand the concept of trees or plants getting sick and withering. It might be helpful to provide children with this example. Alternatively, if your child has had the experience of a sick or dying pet, this might also be a helpful analogy.