How dementia in someone close 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 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 reminding why the person with dementia sometimes behaves 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 repeatedly hearing the person with dementia repeat the same stories and questions
• 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 feeling 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 to 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 help if the child is given time to express their feelings and talk about how these changes are affecting the whole family. 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.

You could also suggest that they could explain to their friends the changes that are happening to their relative, which will help their friends to understand too.

Common anxieties

A child or young person may be afraid to talk about their worries. They may know that the adults are already under strain and don’t want to upset them further. Older children and teenagers may feel embarrassed to show their feelings, and may hide their emotions by seeming uninterested or detached. They may need gentle encouragement to talk about their feelings.

Young people sometimes believe that they are responsible for the dementia. These feelings are a common reaction to any unhappy situation, especially if they do not understand it or are not given a clear explanation of why the person has changed. It is important to address their anxieties, use reassurance, provide information and clearly explain the reasons why the person seems different. You may find What is dementia? helpful.

Another common concern among children and young people is that they, or their parents and other relatives, may develop dementia in the future. Reassure them that this is unlikely. Genetics of dementia, and Risk factors for dementia can help you to understand what causes dementia.

Signs of distress

Everyone reacts differently to difficult experiences and shows distress in different ways. This is the case for children and young people, as well as for adults. If you are worried about how the situation is affecting a child or young person, the following signs may be worth keeping an eye out for.

• Anxiety-related symptoms – Nightmares, difficulty sleeping, attention-seeking or naughty behaviour, as well as unexplained aches and pains, are all signs of anxiety. They show that the young person may need more support. Make sure they have plenty of time to talk things through. If you’re worried, consider talking to the school or the GP.
• Schoolwork – Children and young people who are upset find it harder to concentrate and their schoolwork may suffer. If this happens, talk to the appropriate teaching or support staff so that they are aware of the situation and understand the difficulties.
• Appearing unaffected – If a child or young person appears uninterested in the situation, or seems unusually cheerful, they may be bottling things up or putting on a brave face. You may need to encourage them to talk about the situation and to express their feelings.
• Being sad and weepy – Some children and young people respond by feeling very upset and may need a great deal of attention over a long period of time. Even if you are feeling under a lot of pressure, try to give them some time each day to talk things over.
• Retreating from the situation – Older children and teenagers can often seem preoccupied with their own lives and may retreat to their own rooms or stay out more than usual. They may find the situation particularly hard to handle because of all the other changes and uncertainties in their lives. Teenagers may feel embarrassed to talk about their feelings, but they still need to know that you love them and that you want to understand what they are going through. Try to talk things through in a calm, matter-of-fact way.
• Getting overly involved in a person’s care – It is understandable that children and teenagers may want to get involved in caring for someone they love. However, it is important that it doesn’t interfere with their own development. Adopting mature or ‘adult’ roles and responsibilities can deprive children and young people of opportunities to enjoy childhood and this may cause problems later in life.