The most important thing to remember when supporting children to understand dementia is to talk. It’s important to encourage family members to reassure children and young people that they are there for them, and they are in this situation together.
This makes children feel that other people also understand the difficulties they face. They need to know that, despite all the pressures, they are still loved, however preoccupied, sad or frustrated people may seem at times while supporting a person with dementia.
It will help children and young people if they can be given regular time to talk to someone, and provided with opportunities where they can talk about any concerns they might have.
Here are some tips to help you discuss the situation effectively. Discussing means both talking and listening – and listening may be the most valuable part of the conversation as children will have a lot of questions about what is happening to the person that they know.
1. Explain the situation as clearly and calmly as possible and give them time to understand and process the information.
2. Try to use simple examples of behaviour that might seem strange, such as the person with dementia forgetting where they are or wearing a hat in bed
3. Focus on the things that the person can still do, as well as those that are becoming more difficult.
4. Try to be patient. You may need to repeat your explanations on different occasions, depending on the age of the child or young person.
5. Encourage the child or young person to ask questions, if they have them.
6. Ask how the person’s dementia makes the child or young person feel. Listen carefully to what they have to say and try to imagine the situation from their point of view. This will help you find out exactly what might be worrying them. They might be scared if their grandmother doesn;t seem to remember them all the time.
7. Give the child or young person plenty of reassurance and hugs, where appropriate.
8. Don’t be afraid to use humour, if it feels appropriate. It often helps if you can laugh about the situation together. Granny wearing a hat in bed might be funny and it is okay for them to say so!
There are some other things that you can do to encourage communication and help children to understand.
If the person with dementia has received an early diagnosis, they may be able to talk about their dementia clearly to a child or young person. Hearing about things from the person with dementia can help them to understand in a clearer way.
The same is true if the person has a form of dementia that does not affect their understanding and communication in the early stages. At any stage of the condition, the person can still hug the child or hold their hand, if that feels right. These can all be a good way of reducing fear and maintaining a positive relationship. The person may need support in talking to the child or young person, and it might be helpful if you are present when the conversation takes place.
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. This can be something as simple as bringing them a biscuit or a cup of tea. 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.
Let them know that simply being with the person with dementia and showing them love and affection is the most important thing that the child or young person can do.
Try to ensure that the time they spend with the person is pleasurable. Activities could include going for a walk together, playing games, sorting objects, listening to music or making a scrapbook of past events.
Talk about the person’s life and interests and show the child or young person photographs and mementos.
Take photographs of the child or young person together with the person with dementia, to remind you all that there can be good times, even during the illness.
Don’t leave a child or young person alone in charge, even briefly, unless you are sure that they are happy about this and will be able to cope.
Be aware of things that the person with dementia may find upsetting or confusing, and be prepared to provide reassurance if these occur when a child or young person is present. Talk to the child or young person afterwards if the person does become upset or confused, to help them understand why this happened.