Telling children

 When I was first diagnosed with younger onset dementia, my then 17 year old son said, 'But mum, isn’t that a funny old person’s disease?'
- Kate, diagnosed at 49 with young onset frontotemporal dementia

Explaining to your child that you have dementia is not easy at any age, but explaining it to young children and teenagers can be especially difficult.   Young onset dementia complicates it further, as rather than a grandparent, it is their own parent, who is still meant to be in the ‘role’ of caring for them.   Children may experience a wide range of reactions, thoughts and feelings about your diagnosis. 

  • Sadness in reaction to what is happening to someone they love and need.
  • Fear and anxiety about what will happen to them in the future.
  • Irritation or boredom towards repeated stories and questions and perhaps guilt for feeling this way.
  • Embarrassment of being seen with a person with dementia.
  • Confusion about 'role reversal'. 
  • Loss.
  • Anger or rejection.

There is no doubt in my mind that young children are capable of getting to grips with illnesses like dementia, and seem to have an uncanny knack of understanding more than adults give them credit for. 

- Ken, diagnosed in his 50s with dementia with Lewy bodies

There are a number of books that help to explain dementia to children that you may find useful.  These usually relate to a grandparent with dementia, rather than a parent or loved one with young onset dementia, but some of the information and how it is presented may be helpful in explaining to a child about the condition and the changes that may be to come. 

Tips for supporting children and teenagers

  • The key is to share information with them that is clear and easy to understand.
  • The changes they are seeing in you are due to the condition - there is no one to blame.
  • Make it clear to the child that dementia is not contagious.
  • It is advisable to inform their teacher at school about the situation.  They may be able to provide additional support.
  • If they want to be involved, find ways that they can engage in providing care and support.

YoungDementia UK has created a film titled Adapt – Being a parent which features people affected by young onset dementia discussing how they shared the news of their diagnosis with their children, how they reacted and the impact the diagnosis has had on their family relationships.  You can watch the film below. 

Kate Swaffer has written a piece for our website on the impact of her young onset dementia diagnosis on her two children.  You can read it here.  And Gemma Little's mum was diagnosed with young onset Alzheimer's disease when she was just 11 years of age.  You can read her advice for children who have a parent living with dementia here

Alzheimer's Research UK has created a website 'Dementia Explained' aimed at children and teenagers.  The When Dementia is in the House website has a very informative section advising parents. The Alzheimer's Association website has a section that contains information created for children and teenagers that explain more about Alzheimer's disease.  The Association of Frontotemporal Degeneration has created a website specifically aimed at 'kids and teens.'  Intended for children with a parent with frontotemporal dementia, the information and advice is generally applicable for other dementias too. 

The Alzheimer’s Society has a useful leaflet about explaining dementia to children and young people.  The milk's in the oven is another well written booklet about dementia for children and young people.  Frank and Tess - Dectectives is a children's activity book designed to help children aged 5-9 who are living with a parent affected by frontotemporal degeneration (FTD). 

We list books about dementia that are written for children here.

The Dragon Story is a four minute-long animation which explains dementia to children aged approx 5-9 years old through the story of Simon and his grandpa Drake.

Dementia UK has created a short animation to help explain dementia to children, you can watch it below.

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