Opinion: Childhood dementia, it’s time to face it!

Childhood Dementia Initiative is an Australian not-for-profit established in 2020 to urgently disrupt the impact of childhood dementia.

When my kids were little, the most accurate measure of a weekend’s awesomeness hinged on whether or not it culminated in face painting.

It is about the only activity that I can recall at any point in their short lives so far that they would actually sit still for the necessary 2 minutes and 45 seconds. There were never any particularly intricate designs and the face painter needed to be swift and skillful, but it’s
incredible how quickly a practiced hand would transform my son Jude’s face into a tiger or splash the signature “Frozen” teal across my daughter Isla’s cheek.

The joy those painted faces brought is something I will treasure when my children are dead and all I have is memories.

Isla in 2017 (age 8) when she still enjoyed her face being painted

A painted face is the essence of childhood, even one that is robbed of almost all other rites of passage by a brutal diagnosis of childhood dementia. This is the hand my family has been dealt and that is why this September 22 I will be painting my face to mark the first-ever
Childhood Dementia Day and help raise awareness that dementia is a disease that also affects children and we need to FACE it!

Without fail, every single time I mention childhood dementia to someone new, I hear ‘I didn’t even know that was a thing,’ or something to that effect. We need policy makers, researchers and investors to come together in order to solve childhood dementia, but how can that happen if they don’t know about it?

There are over 70+ genetic disorders that result in childhood dementia, and only 5% of them have any form of treatment. This means that most children with dementia have a life expectancy of just 18 years of age. Approximately 700,000 children globally and 2,273 in Australia are living with childhood dementia. Like adult dementia, childhood dementia results in the progressive loss of memories, skills, speech and mobility. The prevalence and incidence of childhood dementia are similar to better-known disorders like motor neurone disease and cystic fibrosis.

To date, the limited research that has been undertaken on the individual genetic conditions that cause childhood dementia has been done in isolation. Generally, research is only undertaken due to the fundraising efforts of families who love a child with a particular condition. It’s a bit like an entire school being on fire and only a few heroic parents are responding. They can’t do much more than point hoses at individual classrooms, and desperately try to save as many kids as they can. If you saw that, you’d call the fire department.

This is completely unacceptable. Children like mine and 700,000 around the world deserve better! That is what this campaign is; it’s raising the alarm so that more people and resources are focused on saving all children with dementia.

We need to consider the childhood dementia disorders as a collective, in much the same way as we do for other disease groups like cancer or aging dementia, so that development of much needed treatments can be done in a much more efficient and effective way. This will ultimately improve the care and quality of life for children who suffer from dementia.

So, please, I ask you to consider joining me in a little bit of fun that could have a profound impact. Paint your face and take a photo. (You can be messy and if you don’t have face paints, just use what you have in the house like lipstick, eyeliner or eyeshadow). On Childhood Dementia Day, September 22, share your picture on social media with the hashtags #childhooddementia #faceit. More tips available here.

No one expects an adult to paint their face, just like no one expects a child to have dementia.

Isla no longer asks for her face to be painted, not because she is too old for such things, but because as her dementia has progressed she has lost the ability to speak and the comprehension of this once adored and longed for activity.

Childhood Dementia Day gives adults a chance to be kids again, but it could also give kids the chance to be adults.

Megan Donnell

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CEO and Founding Director, Childhood Dementia Initiative

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