How children and young people respond when a person has dementia

Children and young people can respond in a number of different ways when someone close to them has dementia. We look at common reactions and worries of children and young people, as well as signs of distress. 

Children and young people can respond in a number of different ways when they find out that a person has dementia. 

Emotions that children and young people may feel

  • Confusion about what dementia is and how to respond to or behave with the person
  • Grief and sadness about what’s happening to someone they love
  • Fear about what will happen to the person in the future, and whether they will develop dementia too, especially if the person has a rarer type of dementia with a strong genetic link. See our page on Genetics of dementia
  • Anxiety, irritation or embarrassment – for example, because the person with dementia behaves unusually in front of other people. Or they might feel labelled at school or in friendship groups simply as the relative of a person with dementia
  • Boredom – for example, with hearing the person with dementia repeat the same stories and questions
  • Fear of the person with dementia and their behaviour
  • Confusion about ‘role reversal’ and a feeling of instability – for example, having to be responsible for their parent 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
  • A sense of uselessness because they feel they can’t help the person to cope or 'get better’
  • Stress and confusion around their own future – for example, if a parent has dementia the young person might feel concern about going away to university and ‘leaving’ the other parent to cope
  • Rejection – if other family members are under pressure and seem to have less time for them than they had before
  • Guilt for feeling any of these emotions.

Children and young people may be afraid to talk about their worries. They may see that you and other adults are already under strain and not want to cause any further upset.

Older children and teenagers may feel embarrassed to show their feelings or may try to distance themselves from their emotions by becoming uninterested or detached. They may need gentle encouragement to talk about their feelings.

Common worries for children and young people

Worrying that they have done something wrong

Young people sometimes believe that they are responsible for the way that people around them are acting, including the person with dementia and other family members. This belief is a common reaction to any unhappy or difficult situation, especially if they do not understand it fully.

On particularly difficult days, carers and other adults might be short-tempered or not have time for younger people, or simply may not be at home as much. They may also be finding it difficult to manage the practicalities of caring.

Children and young people might interpret this as being their fault, and all of these changes can make a child or young person feel anxious. It is very important to reassure them that they haven’t done anything wrong, and that they’re not responsible for the way that others are feeling or acting.

Worrying that they have upset the person with dementia

They may also feel this way if they are not given a clear explanation of what dementia is, and how it can affect people.

For example, if the person with dementia behaves in a way that is out of character, the child or young person may think they have done something wrong to cause the reaction. It can be helpful to reassure the young person and talk about their anxieties, and also provide more information about dementia and why the person seems different.

Worrying that they might catch dementia

Another common worry among children and young people is that dementia is contagious and they might catch dementia. Reassure them that this is not how people develop dementia. Older children may find our information about dementia and the brain helpful – including a series of films called The brain tour

They may also worry that they, or their parents and other relatives, may develop dementia. See Risk factors for dementia for more information.

It might also help to explain that scientific research means that better treatments or even a cure could be found in the future.

Signs of distress in children and young people

Everyone reacts differently to difficult experiences and shows distress in a wide range of ways. This is true for children and young people as well as for adults.

The age of the child or young person, as well as their personality and stage of development, will all play a part in how they react. Some children, especially very young children, may not recognise or be able to communicate that they are feeling stress at all.

If you are worried about how a situation is affecting a child or young person, the following signs may be useful to look 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. Loss of appetite, feeling or being sick, or constantly feeling tired can also be signs.

A deterioration in their schoolwork

Children and young people who are upset find it harder to concentrate and their schoolwork may suffer. 

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. They may need some time before they are ready to talk about how they feel.

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 or studies. 

Adopting mature or ‘adult’ roles and responsibilities can deprive children and young people of opportunities to enjoy childhood.

See How to support children and young people for ideas on how to involve them in a healthy and balanced way. 

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