Talking to Children and Young Adults

It is very natural to want to protect children and young people from a diagnosis of dementia.

Finding the words to explain dementia and what it means is difficult, especially if you are just coming to terms with your diagnosis.

However, it is essential to try to be as honest as you can about the situation. Try to provide clear explanations and plenty of reassurance. You may want to tell your children yourself, or you may want help from their other parent or grandparents/trusted loved one. Let your children know who they can talk to about dementia in addition to you, so they know the people they can go to with questions or worries.

You and your family know your children and can adapt what you say to suit their age, and you can sense how much they can cope with. It is essential to let them know it is ok to ask questions and share their feelings. Listen to what they have to say.

Tips for explaining to children

• Explain the situation as clearly and calmly as possible.
• Give practical examples of changes you have experienced to help you explain what you mean, examples that maybe they saw or heard.
• Focus on the things that you can still do and those that are becoming more difficult.
• Be patient. You may need to repeat your explanations on different occasions, depending on the age of the child or young person.
• Once you have set out the facts, encourage the child or young person to ask questions.
• Ask how the illness makes the child or young person feel. Listen carefully to what they say, and try to imagine the situation from their point of view so that you can find out precisely what might be worrying them.
• Give the child or young person plenty of reassurance and hugs where appropriate.
• Don’t be afraid to use humour. It often helps if you can laugh about the situation together.
• Also, remember that although the news may be distressing, children and young people may find it a relief to know that some of your behaviour is part of an illness and is not directed at them.

Involving children and young people

Try to involve the child or young person in your daily life and routine. It is good to attempt to have regular uninterrupted ‘quality time with them, where possible. This will help make the situation seem more usual and prevent them from feeling shut out. However, don’t give them too much responsibility or let these tasks take up too much of their time − it’s crucial that they continue with their everyday lives.

Emphasize that spending quality time with you − going for a walk together, playing games, sorting objects or making a scrapbook of past events – is the most essential thing the child or young person can do.

Take photographs of the child or young person and you together, 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 in your mind that they are happy about this and will be able to cope.

Make sure that the child or young person knows you appreciate their efforts, and help them see how their involvement benefits you.