A You have identified two very important aspects when it comes to supporting children in understanding dementia: the factual information they need to know and the emotional support children may need as your father goes through the different and often challenging changes associated with dementia.

You are right about age-appropriate information. Children need to know enough so that they don’t become confused about why a loved one’s behaviour is changing. Pick a time when you feel ready to provide the information and support, and also when you feel your children will be most receptive to this type of conversation. You know your children best and some children are more relaxed during play time, whereas others may respond better at a time when they are not trying to focus on play.

At the ages of 5 and 7, their understanding of medical conditions will be limited and they may not have developed an understanding of the permanency of certain conditions.

• If you or the children have noticed any changes in your father recently, you might open the topic by using this as a starting point; for example, “You know when grandpa forgot your name the other day? What did you think about that?” If there have been no noticeable changes, you can just start by telling the children you would like to talk to them about grandpa. Anticipate some confusion if they have trouble connecting what you are telling them about their grandpa because it may not make sense if they can’t see anything different.
• Speak in plain language in terms of what they might expect to see or hear. Be really clear that this does not happen to everyone and it is not like being sick with a cold. In other words, if they ask you if grandpa will get better with medicine, you can tell them the truth – what you know to be true at the time.
• After describing some of the symptoms, ask your children if they have any questions. This helps you to know if they understand what you are telling them and what support they might need.
• Also ask how they feel about grandpa having dementia. It is normal for them to experience a range of emotions including sadness, anxiety about the future, fear and confusion. Or you may not see a reaction at all – if you get no response and what looks like immediate acceptance, you might want to give it a few days and check in with them again just to make sure they understand. Some children, just like adults, need time to process information.

Also, think about yourself: you are already dealing with knowing that your dad has dementia and telling your children further reinforces that this is real. Dementia impacts on the whole family in different ways and as your dad’s dementia progresses, you will need support too. There are many resources to support you and your family throughout this time. You could have a look at the Alzheimer’s Australia website as a starting point.

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