“Face It” is Childhood Dementia Initiative’s annual campaign to make childhood dementia impossible to ignore by encouraging people to paint their faces with colourful face paint, stickers or masks. Photo: Prostock-studio.
Childhood dementia. Two words you don’t expect to go together, but one expert is coming to the Illawarra to challenge us on this.
As part of the 14th Annual Illawarra Shoalhaven Dementia Forum later this week, Childhood Dementia Initiative lived experience manager Joanne Kershaw will be dropping some truth bombs.
“Most people don’t know childhood dementia is a thing, but it’s real, it exists and one in every 2900 babies born has a childhood dementia condition,” she says. “I work with three families in the Illawarra, but there are many more in the region who are impacted by childhood dementia conditions.”
Like adult dementia, childhood dementia is an umbrella term with more than 100 conditions under it.
Also like adult dementia, it’s a lifelong condition, and there are no cures. Half its victims won’t live past 10.
Despite this, Joanne says the prevailing idea is that dementia is an “old age” condition.
“You can be diagnosed with dementia at any age, you can experience the symptoms at any age, and you can die from it at any age,” Joanne says.
“It’s absolutely shocking, but a similar number of children will die this year from childhood dementia as from childhood cancer — just over 90. And where childhood cancer has a survivorship rate, no child will survive a diagnosis of childhood dementia. Yet the awareness, understanding, care and investment into research isn’t there.
“These are life-limiting pediatric neurodegenerative conditions. All children with a childhood dementia condition will progressively lose skills and capacity, and eventually die from it, which is not acceptable. These kids deserve better, as do their families.”
Advocates and experts are working to dispel the myth that dementia is a ‘normal part of ageing’. Photo: westend61.
Childhood Dementia Initiative is working to change this through research, care and policy responses for all children with dementia.
At the forum, which takes place on Childhood Dementia Day, Joanne will present an introduction to childhood dementia, its prevalence, and calls to action for the community to get informed and connected.
“We will need whole-of-community awareness — including across the education, health and disability sectors — to achieve systemic change,” Joanne says. “We must also challenge the stigma that dementia is a ‘normal part of ageing’. The fact is, it can affect anyone in our community, and we need to get past this thinking.”
Joanne will be joined at the forum by Dementia Australia’s Dr Kaele Stokes, who will talk about Dementia more generally, and Federal Government representative Robert Day who will cover the implementation of the new Aged Care Act via the Support at Home and Residential Care programs.
In addition there will be stories of carers of people living with dementia and an interview with a person with dementia.
An art exhibition of works created by people with dementia, as well as displays from service providers, researchers, academics, technology providers and aged care specialists, will be available to peruse during the lunch break.
While donations are welcome, lunch is free, and there is also a free shuttle from Nowra.
The Annual Illawarra Shoalhaven Dementia Forum is the brainchild of dementia advocate and local legend Val Fell.
Funding comes from Dementia Support Australia, Dementia Australia and the Federal Government.
“That’s incredibly important to me, because come hell or high water, I will always operate on the principle that the event will remain free to the public,” Val says. “Information about dementia should be available to all.”
The 14th Annual Illawarra Shoalhaven Dementia Forum will be held on Wednesday 17 September at the Fraternity Club in Fairy Meadow — register via eventbrite and for the free shuttle from Nowra (departing 8:15 am), call Val on 0488 114 555 or Lynda on 0417 468 977.
