This webinar was held on 5 December 2023. Following the recent publication of a world-first study on the extent of childhood dementia, this webinar discussed the global opportunities, benefits and issues arising from the collective consideration of childhood dementia.

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Panellists included clinicians, researchers and health economists involved in the childhood dementia burden of disease study, and parents of children with dementia. The discussion centred on the unmet needs, challenges and opportunities to drive awareness, research, and therapeutic development for childhood dementia.


  • Dr Nicholas Smith, Consultant Neurologist and Department Head, Neurology and Clinical Neurophysiology, Women’s and Children’s Health Network, South Australia and Head of Paediatric Neurodegenerative Diseases Research Group at the University of Adelaide.
  • Dr Michelle Farrar, Professor in Paediatric Neurology, University of New South Wales and Specialist Child Neurologist and Lead for Rare Neurological Diseases Clinical and Research Programs, Sydney Children’s Hospital 
  • Dominic Tilden, Director, Thema Consulting, a health economics consultancy based in Sydney, Australia
  • Renee Staska, mother of three children diagnosed with a childhood dementia condition (Niemann-Pick disease type C)
  • Megan Maack, Director and CEO, Childhood Dementia Initiative, and mother of two children with dementia caused by Sanfilippo syndrome
  • Chaired by Dr Kristina Elvidge, Head of Research, Childhood Dementia Initiative.

Questions and answers

Do we know why these diseases affect children, rather than adults where many gene mutations lead to similar changes late in life? If we could delay the onset, possibly we could reach a point where the impacts would be less due to less affect of the mutation on the adult brain? Or would the effect be the same later on?

The age at which symptoms start to appear generally is determined by how quickly the brain is damaged by the cellular processes that are interfered with by the genetic mutation. In childhood dementia, the genetic mutation interferes with cellular processes that are so crucial to brain function that symptoms start very early. The damage would occur whether it is a child’s or adult’s brain. However, some conditions also affect neurodevelopment, and, in these cases, it will be especially important to treat early to give brain development the best chance and simultaneously prevent neurodegeneration.

Conversely, for adult-onset dementia, symptoms don’t appear until later in life and are a combination of genetic susceptibility, environmental and lifestyle factors. It isn’t until these factors converge later in life that symptoms appear.

Could we find common pathways between the diseases that are treatable and those that aren’t? This may find mechanisms that could be targeted earlier in the latter.

The conditions that are treatable generally have a very simple mechanism that can be treated. For example, phenylketonuria (PKU) is caused by a change in the phenylalanine hydroxylase (PAH) gene. This results in the amino acid phenylalanine building up in the body. Treatment involves a diet that limits phenylalanine (low-protein diet). This would not be applicable to other conditions. However researchers are investigating common pathways in the currently untreatable childhood dementias in the development of new drugs and this is one of the economies of scale that could be gained from bringing these conditions with similar symptoms under one umbrella.

Are you seeing any post-COVID cases [in children]? I currently have a case of a young man in college who has a highly progressive dementia with Lewy bodies (DLB) which developed after SARS-COVID19 infection.

No, we haven’t seen any childhood dementia cases that appear to be linked to COVID19. We do know that other infections such as subacute sclerosing panencephalitis (SSPE) caused by the persistence of the measles virus in the CNS, is a significant cause of childhood dementia in countries where immunisation rates are low such as sub-Saharan Africa and Southeast Asia.

I had a question for Renee but perhaps others have some thoughts on the matter too...obviously treatment options are the primary concern, but I’d like to hear what, if anything, could have made things more manageable for Renee and her family during the initial engagement with medical services? Perhaps its better educational resources, or maybe better guidance through health services and NDIS (which can be challenging at the best of times) or assistance programs, or anything else really.

From Renee: It would be helpful for families to be reassured that they aren’t alone in receiving this “rare” diagnosis. If there were readily available groups or pathways that could be offered, ie. Childhood Dementia Initiative or even smaller particular groups. Although probably not much sinks in after hearing such a devastating diagnosis. Being sent home with nothing but Google doesn’t do anyone any good.  

That comes from my own experience of having one child diagnosed and being reassured it is a 1:4 chance, then having all three children diagnosed and not knowing if we were alone or if there were any other families at all.  

I’d also recommend that if you are to be introduced to palliative care very early (like we were), that it is explained how much support they can offer you before you need them. I felt very angry at being given the diagnosis and being introduced to palliative care in the same meeting, it felt like there was nothing to be done and my children had been written off. 

It wasn’t until speaking to another mum who had been involved in a similar situation, that I understood how important it would be to build a relationship with these people well before you need them.  

From Childhood Dementia Initiative: Childhood Dementia Initiative is also undertaking research in this area. You can access insights and information on family experiences. In addition, through a Department of Health funded project, we have developed resources for health professionals to support their work with families impacted by childhood dementia. It includes advice and information from families and health professionals. A major psychosocial study has also been commissioned with UNSW which will look in depth at the impact on families and how they can be better supported. Recruitment to this study will start early in 2024.

About the Childhood Dementia Webinar Series:

The Childhood Dementia webinar series aims to cover a range of topics to enhance engagement and foster collaborations amongst researchers, clinicians, and industry experts to accelerate research and development of treatments for childhood dementia.

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