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Devastating effects of little-known childhood dementia revealed

There are an estimated 459,000 Australians living with dementia. It is estimated that this costs Australians $15 billion per year and without a medical breakthrough the numbers of people with the disease is expected to rise to 590,000 by 2028 and 1,076,000 by 2058.

That paragraph, or one similar, has been written in this publication many times over the years. For those in the aged care sector, the facts are well established.

What is less understood, or to be more accurate virtually unknown, is that one in every 2,800 babies is born with a genetic condition that leads to childhood dementia. There are over 70 conditions known to cause this in children, such as cystic fibrosis, and less than 5 per cent of these disorders have an effective treatment.

It is estimated that 700,000 children worldwide are living with dementia and each year 129 children in Australia are born with a condition that will lead to Childhood Dementia.

In 2021, it is estimated that there will be 2,273 Australians living with the disease.

“Depending on what the condition is, it could come on as early as very early infancy, or even into the teenage years,” said Megan Donnell, Chief Executive of Childhood Dementia Initiative (CDI).

CDI is a new organisation tasked with raising awareness of this overlooked aspect of dementia.

“There is quite a spectrum, but the trajectory is relatively similar regardless of the condition that the child has. So usually in the early days, children or babies may be hitting their milestones and at some point they’ll be getting slow in their development. And that development will eventually then tail off and become regression and they begin to lose their skills. So there are a lot of similarities between the ageing dementia and the childhood dementias in terms of the presentation,” Donnell told Aged Care Insite.

Donnell says that a decline in cognitive abilities, memory loss, difficulties keeping attention and concentration as well as disorientation and anxiety are all common in children with dementia, and she speaks from experience.

“I have a terrible story about my then 10-year-old daughter wandering from home and ending up on a bus and looking like a regular 10 year old girl, nobody questioned her. I’ve talked to a lot of people with ageing parents and that’s one of the big challenges that they face,” she said.

Donnell has two children who have dementia due to a rare disease called Sanfilippo syndrome.

Her daughter, now 11, had an intellectual disability but was still able to converse with Donnell and was toilet trained. However, in the last 18 months she has shown severe regression. She no longer speaks and she’s incontinent. Her level of engagement is extremely low, and Donnell believes that she suffers a lot. 

“She’s very distressed a lot of the time. We don’t know if it’s physical pain or emotional pain,” she said.

“But there is certainly that distress that I know imprisons even a lot of people with ageing dementia, and her personality has completely changed from the sassy, bright little girl that she once was, to the person that she is today. So it is a really tragic thing.

“My son is nine, he’ll be 10 next year. And he, so far, is faring relatively well, but we’re starting to see some early signs of regression in him. And obviously I’m very caring to what those signs are, having already been through it once with my daughter. 

“So it’s unimaginable. People who know him and know them both, say to me ‘I can’t imagine him being like her in two years.’ That’s the reality that we’re facing. It’s like a daily incremental loss every single day. It’s very, very hard.”

The CDI launched with the release of a white paper and Burden of Disease report, to give people an insight into the impact and horrific nature of childhood dementia.

The Burden of Disease report reveals that childhood dementia currently costs the Australian health system approximately $40.4 million per annum.

It is also costing $39.7 million in indirect costs, $233.5 million in costs of life years lost and $75.0 million costs to the National Disability Insurance Scheme (NDIS) in an average year.

The average lifespan of a child with dementia is 28 years according to Donnell, but most pass away before 18. For this reason the CDI want better recognition as well as collaboration between ageing and childhood dementia to produce better research and find effective therapies.

“We really want people to know that dementia affects children too. We want people to talk about it as a problem for our society. We also are looking to drive research into childhood dementia disorders.”

“And when you think about those numbers and the opportunity that exists to really provide solutions and therapies that would change the lives of many, it’s a really important and urgent cause that we’re working towards.”

More information on The CDI can be found here.

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