Telling the Children about a Dementia Diagnosis

Telling the children about a dementia diagnosis

Children of all ages, including young adult ‘children’, may be feeling anxious and confused. ADASA has summarised some important points to help you through this process.

When you are upset about someone close to you after a dementia diagnosis, it is easy to forget just how confused and anxious your children may be feeling. Children need clear explanations and plenty of reassurance so that they can cope with the changing situation. Though the facts may be upsetting, it may be a relief to know that their relative’s strange behaviour is part of an illness and not directed at them.

Explanations will need to be appropriate to the level of your child’s age and understanding, but always try to be as honest as you can. It is easier for children to cope hearing the unpleasant truth now, with your support, rather than finding out later and then developing trust issues as they can no longer believe what you say.

Giving Explanations

It is always difficult to process worrying and sad information. Be patient with children who will need explanations repeated quite frequently.
Encourage your children to ask questions and then listen to what they have to say, so you can find out what might be worrying them.
Give them plenty of reassurance and hugs and cuddles at the right time.
Practical examples, such as your loved one forgetting an address, getting words mixed up or wearing a hat in bed can often help you to make a point more clearly. Use humour as it often helps if you can see the funny side of a situation and laugh together. However, do not laugh at your loved one.

Children’s Fears

Your children may be frightened to talk to you about their worries or show their feelings in case they upset you.
Young children may believe they are responsible for the illness because they were naughty or had ‘bad’ thoughts.
Older children may worry that the dementia is a punishment for something their loved one did in the past.
Children will need reassurance that it is unlikely that they or any other relative will develop dementia just because they are related to someone with dementia.

Changes for your Child

When someone in the family develops dementia, everyone in the family is affected. Children need to know that you understand the difficulties they face and that you still love them, even though you may be irritable and not giving them enough attention. Try to make time to talk to your child or children without interruption. Young children may need reminding of just why their loved one is behaving in a strange way and all children may need to talk about their own feelings, as new problems arise. The following points are some of the difficulties they may wish to discuss.

Their grief over what is happening to their loved one and anxiety about their future.
Fear, boredom, irritation or embarrassment at their loved one’s behaviour, perhaps mixed with guilt for feeling this way (this reaction is more common with teenagers).
Having to take responsibility for someone they may remember as being responsible for them.
Feelings of loss because their loved one can no longer communicate with them or because things are not the way they were.
Anger because other family members are stressed and have far less time for them than before.

Expressing Feelings

Children react differently to experiences and show distress in different ways.

Behaviour that may seem attention-seeking or naughty, nightmares or difficulty sleeping or inexplicable aches and pains may suggest that your child is very anxious about the situation and needs even more reassurance.
Schoolwork often tends to suffer due to difficulty concentrating. It is a good idea to communicate this with the staff at your child’s school, so they are aware of the situation.
Some children put on a cheerful front (or use humour to deflect from the situation) or appear disinterested despite feeling very upset. Encourage your children to talk about the situation and to express their feelings.
Other children may be very sad and will sometimes cry. These children need a great deal of attention over quite a long period. Try to make time each day to talk things over.
Teenage children often seem self-absorbed and may retreat to their bedroom or stay out more than usual. They may find it particularly difficult to cope because of all the other changes and concerns in their lives. They will also need reassurance that you love them and understand their feelings. Calmly talking to them may help them to sort out some worries.

Involving the Children

Find ways of involving your children in the care and mental stimulation of your loved one. There is a fine balance, however, between giving them too much responsibility or allowing it to take up all their time. Children should also be encouraged to continue with their normal lives.
Make it clear that just being with their loved one for short periods and showing love and affection is the most important thing they can do. Try to ensure that most of the time spent with their loved one is pleasant – such as going for a walk together, playing games, sorting objects or making a scrapbook of past events.
Talk about your loved one as he/she was and show your children photographs and souvenirs. Take photographs of your loved one with your children, to remind you of all the good times, even during the illness (younger children will also be extremely grateful for these memories in later years).
Don’t leave your children alone in charge, even for brief spells, unless you are sure they are happy about this and can cope. Make sure your children know that you appreciate their efforts.
Tell your children how proud their loved one is of them, although he/she may not be able to express it in words.

Remind your children that love remains connected forever in all hearts, even when memory fades.

By Kim Hellberg (ADASA KwaZulu Natal Regional Manager)

Contact ADASA for Caregiver Support and Training: www.adasa.org.za or info@adasa.org.za or call our National helpline 0860-102-681.

Resources:

Other youth engagement initiatives in Asia Pacific:

Singapore:

https://www.aic.sg/wp-content/uploads/2023/05/AIC-Intergeneration-Toolkit.pdf

ASEAN:

https://asean.org/alzheimers-disease-international-asean-promote-intergenerational-collaboration-for-dementia/

Indonesia:

https://www.atmajaya.ac.id/en/pages/727-atzielphie/

Youth Engagement Program by Alzheimer’s Indonesia (ADI Conference):

https://www.youtube.com/watch?v=lvbINZGXEHg