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Global Neurologists Call for Action on Childhood Dementia

March 2025: Respected childhood dementia experts have published a call for urgent global action on childhood dementia in an editorial for the international medical journal, Pediatric Neurology.

Their editorial, titled ‘Childhood Dementia: The Collective Impact and the Urgent Need for Greater Awareness and Action’[1], highlights the need to address the conditions that cause dementia in childhood as a collective to improve research, care, and policy development.

Childhood dementia encompasses over 140 different life-limiting genetic disorders that cause progressive neurocognitive decline in children[2,3]. It affects an estimated 1 in 2,900 births in high- income countries. Approximately 70% of affected children do not survive to adulthood, and median life expectancy is 9 years[2]. The editorial emphasises that deaths from childhood dementia are comparable to childhood cancer in high-income countries, yet childhood dementia receives significantly less attention and research funding[6,7]. It’s expected there is a substantially higher disease incidence in middle- and low-income countries.

“While childhood cancer survival rates have improved dramatically over the past 20 years, there has been no notable improvement for children with dementia," said Professor Simon A. Jones, consultant in paediatric inherited metabolic diseases at Manchester University NHS Foundation Trust, UK, and one of the editorial's authors. “The disparity is stark — only seven FDA-approved drugs exist for childhood dementia compared to 51 for childhood cancer, and those seven drugs only help about 10% of diagnosed children."

The authors outlined some of the severe challenges faced by affected children, including frequent and intense pain, behavioural and psychological symptoms, sleep disturbances, communication difficulties, and mobility problems[5]—all compounded by significant delays in diagnosis. Research has also highlighted the immense psychosocial toll on parents and caregivers, including social isolation, economic hardship, and difficulties navigating healthcare systems[4].

Australia is leading global efforts to address childhood dementia in a system-wide approach. This work was spearheaded by Childhood Dementia Initiative, which was founded in 2020 to address the childhood dementia conditions collectively.

“By unifying these conditions under the term ‘childhood dementia’, we're not only raising essential awareness but enabling economies of scope and scale in research, healthcare delivery, and support services," said Dr Kristina Elvidge, Head of Research at Childhood Dementia Initiative. “This approach focuses on common symptoms and challenges rather than the biological basis of each disease, allowing us to deliver comprehensive solutions that benefit many more children and families, including precision medicine approaches [2]. It’s the same approach we take to cancer today and which has delivered significant gains in awareness, research, support, survival and quality of life. There are many forms of cancer, and all fall under the umbrella term ‘cancer’."

The authors emphasise that increased awareness of childhood dementia has already resulted in tangible progress, including targeted research funding, policy inclusion and the extension of dementia services to children in Australia, but much more needs to be done on a global scale.

The editorial’s authors call for:

  • Greater awareness and education
  • Earlier diagnosis through improved screening and diagnostic pathways
  • Increased research funding
  • The establishment and implementation of a global research and policy agenda.
The authors conclude that progress on childhood cancer demonstrates that a concerted effort can significantly improve survival rates and quality of life.

About the Authors:

The editorial was authored by leading pediatric neurologists and specialists from around the world:

  • Professor John Christodoulou, paediatrician and clinical geneticist (Murdoch Children's Research Institute and University of Melbourne, Australia)
  • Dr Kristina L. Elvidge, Head of Research (Childhood Dementia Initiative, Sydney, Australia)
  • Professor Michelle A. Farrar, paediatric neurologist (Sydney Children's Hospital Network and UNSW Medicine, Australia)
  • Dr Alexandra M. Johnson, paediatric neurologist (Sydney Children's Hospital Network and UNSW Medicine, Australia)
  • Professor Simon A. Jones, consultant in paediatric inherited metabolic diseases (Manchester University NHS Foundation Trust, UK)
  • Dr Maina P. Kava paediatric neurologist and metabolic paediatrician (Perth Children's Hospital and University of Western Australia, Australia)
  • Professor Marc C. Patterson, paediatric neurologist (retired from Mayo Clinic Children's Center, USA 2024), currently Chief Medical Officer at Intrabio Inc.
  • Professor Nicholas J.C. Smith, paediatric neurologist (University of Adelaide and Women's and Children's Health Network, Australia)
  • Professor Jo M. Wilmshurst, paediatric neurologist (Red Cross War Memorial Children's Hospital and University of Cape Town, South Africa)
  • Professor Sameer Zuberi, paediatric neurologist (University of Glasgow and Royal Hospital for Children, UK)

References

  1. Elvidge KL, Farrar MA, Christodoulou J, et al. Childhood Dementia: The Collective Impact and the Urgent Need for Greater Awareness and Action. Pediatr Neurol. 2025;164:A6-A7. doi:10.1016/j.pediatrneurol.2025.02.005
  2. Elvidge KL, Christodoulou J, Farrar MA, et al. The collective burden of childhood dementia: a scoping review. Brain. 2023;146:4446-55. https://doi.org/10.1093/brain/awad242
  3. Verity C, Baker E, Maunder P, Pal S, Winstone AM. Differential diagnosis of progressive intellectual and neurological deterioration in children. Dev Med Child Neurol. 2021;63:287-94. https://doi.org/10.1111/dmcn.14691
  4. Nevin SM, McGill BC, Kelada L, et al. The psychosocial impact of childhood dementia on children and their parents: a systematic review. Orphanet J Rare Dis. 2023;18:277. https://doi.org/10.1186/s13023-023-02859-3
  5. Djafar JV, Smith NJ, Johnson AM, et al. Characterizing Common Phenotypes Across the Childhood Dementia Disorders: A Cross-sectional Study From Two Australian Centers. Pediatr Neurol. 2023;149:75-83. https://doi.org/10.1016/j.pediatrneurol.2023.09.006
  6. Childhood Dementia Initiative. Childhood Dementia Global Clinical Trial Landscape Analysis. 2024. www.childhooddementia.org/getasset/LZPRVX
  7. Childhood Dementia Initiative. Australian Childhood Dementia Research Funding Report 2024. 2024. www.childhooddementia.org/getasset/2WX39O