Talking to children and adolescents
Contact and communication
"I’ve always enjoyed explaining things to my grandchildren and they know they can ask me anything. So one day Kirsty asked me why I keep forgetting things. It wasn’t easy but I told her that I had an illness called dementia which affects my brain. She looked quite sad but then gave me a beaming smile and told me she’d help me as much as she could." (Bill)
"My Gran’s had Alzheimer’s disease for some time now. I try to help her as much as I can as she means so much to me. She really appreciates it but insists on me also going out and enjoying myself. I don’t want her to feel guilty so I make sure that I do both!" (Jenny)
People may feel uneasy explaining to their children and/or grandchildren that they have dementia. Some may want to preserve the image that they think their children or grandchildren have of them; others may want to avoid worrying them or feel that they would not understand. However, most children and adolescents are likely to eventually realise that something is wrong. Some may be afraid when their relative behaves differently as they don’t understand why. Some children, especially younger ones, may even come to the conclusion that it is because they have said or done something wrong. It is therefore important to explain that you or the person you are caring for (provided that they agree to this) has dementia and what this involves.
Several children’s books now exist about dementia which may be a helpful introduction to the subject. However, it is best to talk to the child about the book and to answer any questions they may have about the person who has dementia. Some people with dementia might prefer to talk about dementia to the child directly, whereas others might prefer to let someone else explain. Whatever you decide, try to be honest, give examples to make it clear what you mean, encourage the child or adolescent to ask questions and provide plenty of reassurance. Don’t be afraid to use humour.
It is not unusual for adolescents to try to withdraw to their own rooms or to spend more time out of the house. In the long run, children and adolescents may experience a certain degree of sadness about things that have changed and worry about the future. Some may be irritated or embarrassed by the consequences of memory loss and odd behaviour. Others may be angry that people in the family don’t have enough time for them anymore. Whilst these are normal human responses, they may trigger feelings of guilt. It is important to encourage children and adolescents to talk about how they feel about having a relative with dementia and to be on the lookout for signs that they are having difficulty coping e.g.
- having nightmares or difficulty sleeping
- bed wetting
- experiencing difficulties at school (e.g. concentrating)
- being sad and weepy
- being more attention-seeking than usual
- being overly cheerful or seeming to be totally unaffected
For the person with dementia
- Give the children and/or adolescents in your life the chance to understand.
- Ask for help (if you need it) to talk to them about dementia.
- Ask someone else to do the explaining if you prefer.
- Make sure that children understand that they cannot “catch” dementia from you.
- Let them know also that dementia affects older people and not children.
- Let the children and adolescents help you if they can and want to.
- Give them the reassurance they need.
- Remind them that they are important to you even if you sometimes forget their names or to do something you promised.
- Concentrate on what you can still do together. Both generations can get something positive out of keeping close contact.
For the carer
- Encourage your children/adolescents to talk to you about what is going on in their lives (not just in relation to dementia).
- Try to make sure that they feel they can approach you even if you are stressed.
- Let them help you and the person with dementia, if they want to.
- Let them know that you appreciate this.
- Let them know that just being together and showing love and affection is important.
- Children/adolescents may be upset when the person with dementia forgets something of importance to them. If so, remind them that it is due to the disease, not a lack of interest in them.
- Help them find pleasurable things to do together with the person with dementia.
- Find out from your Alzheimer Association if there is a support group or counsellor for children and adolescents (if you think they might benefit from it).
Last Updated: Friday 11 September 2009