In society today, Alzheimer’s disease is surrounded with a certain stigma. To the general public, the condition is often labelled as being a cruel and heart-breaking disease that is not only difficult on the individual diagnosed, but on their friends and family as well. With characteristics such as these, it can only be described as any parent’s nightmare to have to explain Alzheimer’s disease to a child. However, with millions of elderly adults currently battling the disease, there are also millions of young grandchildren exposed to this devastating condition.
Dementia can create some very challenging situations for families and social groups. It can be hard to know how much to explain to children and young people. It is natural to want to protect children from difficult or confusing situations. However, it is important to explain to them what is going on. This is for a number of reasons:
•Children and young people are often 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 the problem is.
•Although the news may be distressing, children and young people may find it a relief to know that the person’s behaviour is part of an illness, and is not directed at them.
•It can be more upsetting for the child or young person to find out later that they can’t trust what someone close to them says, than to cope with the truth – however unpleasant it may be.
•Seeing how people around them cope with situations such as this helps young people learn valuable skills about dealing with difficult and distressing situations, and managing painful emotions.
The most important message is to try to be as honest as you can. Offer 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. Also try to get a sense for how much they can cope with, and tailor your discussion accordingly. It is important to make sure they feel they can ask questions and share the feelings that the people around them might be experiencing.
How dementia in a close family member or friend can affect children or young people
When a close family member or friend develops dementia, each member of the family may be trying to cope with their own difficult and conflicting feelings. They might also be managing the practicalities of caring. Adults may be upset, tired or stressed – or simply not at home as much. All of these changes can make a child or young person feel anxious.
Very young children may need to be reminded as to why the person with dementia is behaving in an unusual way. Young people may need to talk about their feelings as changes occur. These feelings may include:
• grief and sadness at what is happening to someone they love
• anxiety about what will happen to the person in the future
• fear, irritation or embarrassment, for example at unusual behaviour in front of other people
• boredom, for example with hearing the same stories and questions over and over again
• guilt for feeling some of the emotions listed above
• confusion about ‘role reversal’: having to be responsible for someone who used to be responsible for them
• a sense of loss if their relative doesn’t seem to be the same person that they were, or because it isn’t possible to communicate with them in the same way anymore
• a sense of uselessness or rejection because of an inability to help the person cope or ‘get better’
• anger or rejection if other family members are under pressure and seem to have less time for them than they had before
It may be helpful if the young person is given time to express these feelings and talk about the effect that these changes are having on the whole family. Suggest that they could explain to their friends the changes that are happening to their relative, which will, in turn, help their friends to understand also if necessary. Explore ways in which the child or young person 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 the person with dementia.
• Try to find ways to involve your children in the care and stimulation of the person with dementia, but don’t give them too much responsibility or let it take up too much of their time. It is very important to encourage children to continue with their normal lives.
• Emphasize that just being with the person with dementia and showing love and affection is the most important thing they can do.
• Try to ensure that time spent with the person is pleasurable – going for a walk together, playing games, sorting objects or making a scrapbook of past events are ideas for shared activities, which you might suggest.
• Talk about the person as they were and show the children photographs.
• Take photographs of the children and the person together to remind you all of the good times even during the illness.
• Don’t leave children alone in charge, even for brief spells, unless you are sure in your own mind that they are happy about this and will be able to cope.
• Make sure that your children know that you appreciate their efforts.