Why is grandma so weird?
Dementia is a family disease. It encompasses all family members and presents parents in particular with the difficult task of explaining to their children something they themselves are reluctant to realize: Her mother/mother-in-law/father/father-in-law is no longer the same person as before; he is suffering from dementia. Instead of protecting the children and talking "out of the blue", it is more important to confront them with reality.
As is often the case, children understand more than we think. But how do you explain to little children why "Grandma gets so weird"? This information should make your job easier for you as a parent.
How do I explain dementia to my children?
Dementia is not a visible disease. But if, for example, the grandfather or grandmother changes, your children will soon notice.
The disease is diagnosed first by memory disorders and behavioural abnormalities. For example, people suffering from dementia forget many things they always knew in the past, can no longer do many things they had mastered, often retreat or become aggressive. To explain these changes to your children, you could say, for example, "Grandma looks like always. But as you'll notice, she's not behaving like she used to. That's because of her illness, because her brain isn't working as it used to. The disease erases more of what she once learned, like an eraser."
How people with dementia change?
Dementia is recognised first because humans become forgetful. At first only sometimes, but then more often. It also often happens that he can no longer orient himself, for example, he can no longer find his way to the kitchen. Or forgot how to button up a blouse or tie a shoe. Explain to your children that such things are embarrassing for grandmother/grandfather at the start of the disease and that they may try to "hide" them. Later on, when the disease worsens, it is possible that people suffering from dementia may not recognize their own daughter or grandchild at all on certain days. This is painful for all members of the family because they feel that this loved one is alien to them.
What is the burden of dementia on children?
Only one person suffers from dementia - but the disease changes the whole family. Everyone has to learn how to deal with it - parents like children or grandchildren. If children are left alone with their questions and feelings, it becomes difficult and can even have late consequences. Therefore, you should always explain everything to them and answer their questions in a way they can understand. Parents are often sad, overwhelmed and stressed, and experiencing this can be a great burden for them. Even if the grandmother or grandfather becomes aggressive towards the child, it feels guilty. Therefore, they have to explain to the child that grandma or grandpa don't mean it when they scold them. The disease dementia always ends with death and drugs against it have not yet been developed. The children should also experience this even if it is painful. But death is part of life.
What can children "take away" from the situation?
The questions of people with dementia are often difficult for adults to answer. Children are more impartial and playful handling confused people. They are often closer to them than adults because of their naive way of asking questions. Let your children spend a lot of time with the person suffering from dementia if they want to.
From a certain age on, children can support the care of their grandmother, for example - reading to her, telling her something or just listening. They learn early on to take responsibility and give their grandmothers back a little of the care they had already experienced from her as a child before she got sick. Your children will improve from this in later life. However, they should not be involved too much in nursing care under any circumstances - this is too much for them.
What is the most important message to your children in such a situation?
Perhaps this is the decisive sentence if you want to explain the situation to your children: "Your grandmother will remain your grandmother even if she becomes a little strange now because of her illness. She has forgotten a lot of things and over time she is getting more forgotten. But her feelings stay there and therefore she still loves you as much as before when she was still in good health - she can't show it sometimes."
A few parents' tips
Tell your children the truth about the grandmother or grandfather suffering from dementia, who can - "packaged" - understand even small children.
Try to answer all the children's questions regarding dementia, also do not avoid painful questions such as those after death
Tell your child that their grandmother's aggressiveness is not directed at them, that they have done nothing wrong when their grandmother screams at them, but it has something to do with the illness.
Let your children spend a lot of time with the person suffering from dementia - if they want to. This is a valuable experience for young and old alike.
Copyright: Landeszentrale fuer Gesundheitsfoerderung in Rheinland-Pfalz e.V. (LZG) Germany
Text: Dr. Beatrice Wagner, Editor: Birgit Kahl