Explaining Dementia to Children

Finding that your loved one is diagnosed with Dementia is never an easy thing for anyone, especially for young children and teenagers. Explaining the situation can be very challenging.

As difficult as it may be for a parent to explain to their children the situation, it is very important to share what is really going on and talk about what dementia is. Although it’s  in our nature to want to protect our children and prevent stress and sadness, it is advised to let them know in the very beginning and not to wait for too long.

There are a couple of reasons why it is so important to talk with your little children or teenagers and explain the situation.

• Children and young people can easily sense when something is wrong and when there are difficult situations, even if they haven’t been told what is going on. They can sense the tension and see that you are worried or sad.

• Although the horrifying news about the dementia may devastate them, they will feel a sense of relief to know that their relative / family friend who lives with dementia has behaviour that is part of their dementia and it is not directed to them.

• It can be more confusing and upsetting for children to find out what is happening later than to cope with the reality right away, for the simple reason that if a child is not told about the difficult situation they may find it very difficult to trust their parents or people in the future.

“It is important to try to be as honest as you can, by offering 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.” 

Is it okay to share your worries and pain with your children? How do you encourage them to speak with you and tell you how they feel?

Children and young adults often are afraid or embarrassed to show emotions and talk about their feelings. They may hide the way that they feel inside because they know that adults are already worried so they may not want to worry them and upset them further.

“If children sense your stress and irritability, they will not speak up and share their own pain, for fear of overwhelming someone they want to protect and help.”

Nevertheless, it is Important for parents to share their emotions with their children, encourage them to speak and share their emotional as well. It is natural to let your children see you upset and sad but it is extremely essential to find the balance. “It’s fine to break down once in a while and expose your frustration and grief — it’s authentic — but you should limit these episodes. They can scare children, who look to you for stability and guidance.”

Photo By www.alzheimers.net

You can help your children cope with this stressful situation and make them feel a bit better by reassuring words and reminding them that they are not alone in this struggle. Remind them how much you love them and that you will always be there for them, especially to very young children. A gentle reminder that their loved one living with dementia reacts the way they do because of the disease, can go a long way.

Young Children may experience the following Feelings:

• 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.

Encourage your children to talk with you and also to share their concern and stress with their friends so they can understand them better and support them as well.

There are a couple of books for children that explain how to deal with this situation, most of these books are about a grandmother or grandfather living with dementia, young onset dementia is not discussed as much so if this is relevant to you, a different approach may be necessary. You can find books here.

Really and Truly: A story about dementia by Emile Rivard

ARUK offer a webpage with info for children of all ages including teenagers.

Kate Swaffer was diagnosed with onset Frontotemporal dementia at the age of 49, her son was 17 years old at that time, you can read more about her story of younger onset living with dementia here. “When I was first diagnosed, my youngest son said; But mum, I thought dementia was a funny old person’s disease?” says Kate Swaffer. Kate is an author, poet and blogger, you can read more about dementia and her personal story with her children here.

Kate Swaffer and her sons

A healthy escape for children from the emotional pain at home is to encourage them to join outdoor activities such as soccer, swimming, basketball and hockey. This provides a reassuring team atmosphere, a healthy escape from potential burdens of thought. Others may be interested in theater, volunteering or music.

Harry Gardner found it cathartic writing a piece of music for his Nan, inspired by her Alzheimer’s.

Dementia can be frustrating for the entire familyas well as little ones. We try to remember that the person with dementia isn’t “doing” this or that, contrary to how we feel sometimes, in fact those with dementia don’t want to have dementia anymore than we want them to! It is easy to forget that it’s equally as frustrating for the person with dementia. We all gloss over the little tasks we do for ourselves each day. Brushnig our teeth, reading information, going for a walk alone…For someone with dementia, the ability to perform life’s simple tasks are slowly leaving them. That’s both frustrating and frightening.

It is recommended to spend as much time as you can with your children and loved ones. Be patient and try to remain calm as much as you can. Live every day like it is your last day.

“Dream as if you’ll live forever. Live as if you’ll die today.”  ~ James Dean