Finding out that someone close to you has dementia, and then coping with it from day to day, can be distressing for everyone involved. It can be particularly challenging explaining things to children and young people.  It is natural to want to protect children from difficult or confusing situations, but it is important to explain what is going on. Most often, children are aware of difficult atmospheres and tensions even when they haven’t been told the facts, so it can be reassuring for them to understand what dementia is and how it affects their loved ones. It is important to try to be as honest as you can, by offering clear explanations and plenty of reassurance. Adapt what you say and how you say it to the age and level of understanding of the child or young person.

Explaining Dementia

Explain dementia to young children by saying: “When you’re sick, you might have a fever or a cough. Grandma’s brain is sick. She has an illness that affects how her brain works.” Using pictures of the brain, children’s books, and online brochures and videos can be helpful in this situation. After explaining the sickness, go on to explain it’s symptoms and what effects it currently has or could potentially have on their loved ones.

Once you have explained what dementia is and the effects it has, children need to know that their loved one’s behaviour is not directed at them and that they should try and not take it personally. You should also closely monitor their behaviour after you speak to them. If you are worried about how the situation is affecting a child or young person, the following signs may be worth keeping an eye out for – nightmares, difficulty sleeping, naughty behaviour, not concentrating at school, sadness or ignoring the situation.

Encourage communication

Encourage children to talk about their feelings openly, they may feel a wide range of emotions including grief, loss, sadness, shock, embarrassment and sometimes fear. Explore ways in which the child can help the person with dementia, and help them feel loved and wanted. It is important that the child understands that this will not cure the dementia, but it will help their loved one. Try to find ways to involve the child or young person in providing care for the person with dementia, or just allow them to spend time with the person.Visiting their grandparents may be difficult for children, usually finding a topic to talk about is a challenge in itself. When children visit their grandparents with dementia, I would recommend taking something with, either photos, activities or even a pet. This will help the conversation and interaction between the generations. This will help make the situation seem more normal for them, and will prevent them from feeling left out. However, it’s important that they continue with their normal lives so don’t give them too much responsibility, or let these tasks take up too much of their time.

The milk’s in the oven is a well written booklet about dementia for children and young people. We encourage you to utilize this for support.