When a loved one develops dementia, it is likely that every member of the family will be trying to cope with their own feelings, including young children. However, young children in particular may struggle to come to terms with the changes caused by the condition, and you may find them asking what has happened to their grandparent.
Professor Graham Stokes, Director of Dementia and Specialist Service Innovation at HC-One, shares some helpful ways to approach the topic of dementia with young children, and gives advice on how children can still spend quality time with their loved ones.
Why is it important to talk to children when a loved one develops dementia?
Most members of the family will need time to adjust to the news, but it can be particularly difficult for young children. This could be because they don’t understand what dementia is, or they might find it harder to cope with their feelings.
It is perfectly natural to want to protect young children from a potentially difficult or upsetting situation. However, it is important that they know what is happening. After all, relationships with people living with dementia will not - and should not – come to an end.
By explaining why the person living with dementia is behaving differently, children can understand the situation more easily.
When is the right time to talk to children about dementia?
Ideally, the best time is as soon as possible. Even very young children notice when something is different. If they are not told why, then they may start to worry about it – and may even start to think they are somehow responsible.
How can parents first approach the subject with their children?
It is important to clearly explain what dementia is, and to offer plenty of reassurance that people can live well with dementia.
Remember to encourage children to tell you how they are feeling, and to ask any questions they have. But also remind them that their feelings are normal, and that they can speak to you without being judged. You might find that listening is the most valuable part of your conversation, even more than talking.
It can also help to imagine the situation from the child’s perspective. This could help you find out if they are worrying about something specific.
What signs can parents look out for in young children, who may not be able to communicate their feelings at all?
It is completely normal for children of all ages to experience a range of emotions. For example, they could feel confused about what dementia is and how they should behave around their loved one, or they may fear what will happen to their loved one in the future. Some children may even worry that they, or other members of the family, might catch dementia.
But for very young children, they may not be able to communicate that they are feeling upset and worried at all. Because of this, it’s important to look out for the following signs:
● Being sad and weepy.
● Withdrawing from the situation by being quieter than usual or retreating to their bedroom.
● Possible symptoms of anxiety, including nightmares, difficulty sleeping, poor behaviour, loss of appetite, feeling or being sick, or constantly feeling tired.
● A deterioration in their schoolwork, as some children may find it harder to concentrate.
● Not wanting friends to come over if the person living with dementia lives in the same house as them.
● Appearing unaffected, or unusually cheerful, which could indicate the child is bottling things up or putting on a brave face. It may be useful to encourage them to talk about the situation and express their feelings.
When children are asking a lot of questions, what is your advice to reassure them and help them understand?
My first piece of advice is simple: answer questions honestly. Explain as clearly and calmly as you can, at a level that a young child can understand, and acknowledge that things are happening that might seem strange right now.
Here are a few different scenarios that families may come across, along with some guidance about what to say to young children:
● If the person living with dementia cannot remember who someone is, explain to the child that they are still very special to their relative, who will still enjoy seeing them.
● If the person repeats stories and questions, explain that dementia is affecting the part of the brain that helps people remember, so they may forget what they say within moments. However, the person will often remember events that happened years ago, because these historical memories have been thought about hundreds of times and therefore take longer to lose.
● If the person is getting bad-tempered and impatient, explain that they might not be able to do some of the things they used to, which can make them frustrated. Make sure the child knows this is a symptom of the person’s dementia, rather than how their Relative feels towards them.
● If the person does not want to play anymore, explain that dementia makes it difficult to concentrate on activities like counting and reading, but there might be different ways they can spend quality time together.
● If the child is worried that dementia is something they can catch, explain that some people develop it as they get older, but you cannot catch it.
● If the person eventually moves into a care home, explain this is because the person is becoming more forgetful and muddled, so they require additional support. They are moving into a care home where people are properly trained to look after them, to help with the things they find difficult and to keep them safe. Last but by no means least, you can let young children know that, if it’s possible, simply being with their loved one and showing them love and affection is one of the most important things they can do.
What other support and resources are there to help families and young children to understand dementia?
here is lots of support available to help families understand dementia, and adjust to someone they know developing the condition. There are also several websites that are aimed specifically at helping to educate children, including Dementia UK and Dementia in My Family. By helping young children learn about dementia, it may make them feel more comfortable talking about it.
It might also be worth letting your child’s school know what is happening, so they are aware of the situation and understand the challenges the child may be facing.
What can families do to help children get the most out of visits with their loved ones?
First and foremost, try to make sure the time children spend with their loved one is enjoyable. This is important for the young child, because they are making new memories.
Before your visits, it is a good idea to be aware of the things the person with dementia may find upsetting or confusing. Be prepared to provide reassurance if these things occur when a young child is present and talk to them afterwards to help them understand why it caused a reaction.
During the visit, talk to the person with dementia in a way you want the child to communicate with them. Young children often learn by example, so are more likely to imitate your own speech and actions.
To help the child adjust, you could also involve them in the person’s care, if they are interested in helping. They may find there are aspects of caring that they find fulfilling, which may help them feel more included.
Finally, at any stage of dementia, the person can still hug the child or hold their hand, if that feels right. These can all be good ways of reducing fear, reassuring the child, and maintaining a positive relationship for everyone.
Find out more about dementia care at HC-One, or for advice and support on finding the right dementia care home for you, please speak to our professional care advisors on 0333 999 8699.