clinical focus
Young and old
Devastating effects of little-known childhood dementia revealed .
By Conor Burke
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 , 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 .” ■
18 agedcareinsite . com . au