This guest blog is from the Childhood Dementia Initiative, who are working to increase awareness of dementia in children and to accelerate research in this area. 

Read on to find out about the activity of the Childhood Dementia Initiative and please get in touch with them using the links below this blog to discuss their work or explore collaboration opportunities for further research. 

Childhood dementia research: a new way forward

Just like adults who are living with dementia, children who are living with dementia experience memory loss, confusion, behavioural changes and trouble learning and communicating. Their families watch and care for them as they progressively lose their skills – including some they’ve only just gained. And just as it is for adults, dementia in childhood is life-limiting and there are few effective treatments.

Over 100 rare genetic conditions cause dementia in children, and right now, there are an estimated 700,000 lives affected globally. Sadly, 75% of children living with dementia have a life expectancy of just 18 or less, and on average, someone dies every 11 minutes from childhood dementia [1].

Why is awareness of childhood dementia so low?

If you haven’t heard of childhood dementia until now, you’re not alone. It is overlooked both as a health and social issue.

The reason for this: the way childhood dementia has been viewed. Until now, the conditions that cause childhood dementia have been considered, treated and researched individually in silos. The focus has been on underlying causes instead of how these conditions present and impact children.

Accelerating research

Childhood Dementia Initiative is driving a global response to childhood dementia conditions as a collective. This represents a paradigm shift in how these children are viewed, cared for and treated. Applying activity to all childhood dementia conditions and considering all children living with dementia together, creates opportunities for greater scale and impact. More information on this can be found in the State of Childhood Dementia Report.

For researchers, the many benefits of bringing childhood dementia conditions together include:

There is potential to build knowledge and extend progress through greater collaboration between adult and childhood dementia research. A growing body of literature suggests that common disease mechanisms exist between adult and childhood-onset dementias, e.g. neuroinflammation, mitochondrial and endolysosomal dysfunction and the accumulation of proteins and lipoproteins (e.g. P-tau, α-synuclein, cholesterol, sphingolipid) [2, 3, 4]. It was recently discovered that carriers of some childhood dementia gene mutations (previously thought to be asymptomatic), have an increased risk of developing dementia and/or Parkinson’s disease later in life (e.g. GBA, MCOLN1 and SMPD1 genes) [5]. This further cements the link between childhood and adult-onset dementia.

Join the movement

Childhood Dementia Initiative brings together peak bodies, health professionals, service providers, researchers and families to create awareness and change for children living with dementia.

Great progress has been made in building research collaborations and increasing research activity and funding since the establishment of the Childhood Dementia Initiative in 2020. The Childhood Dementia Research Alliance comprises ~120 members. Like the Scottish Dementia Research Consortium, this alliance is free to join and open to anyone with interest in childhood dementia research. Registration is now open for the world’s second Childhood Dementia Symposium to be held in Sydney, Australia, on 14 March 2023.

Childhood Dementia Initiative also raises awareness of research opportunities and drives shared infrastructure for more efficient and innovative research projects. As a first step, The Childhood Dementia Knowledgebase has been developed. It is a publicly accessible relational database that provides data for each of the 100+ rare genetic conditions that cause dementia in childhood. This includes incidence, prevalence, life expectancy, age of onset and diagnosis, genetic cause, signs and symptoms and more.

Dementia is not a normal part of life. Even children get dementia, and we need cutting-edge science to prevent, treat and cure it, giving all people, including children with dementia and their families, the best chance in life.


  1. THEMA Consulting Report (2020). Childhood dementia in Australia: quantifying the burden on patients, carers, the healthcare system and our society.
  2. Qureshi YH et al. Endosomal Trafficking in Alzheimer’s Disease, Parkinson’s Disease, and Neuronal Ceroid Lipofuscinosis. Mol Cell Biol. 2020 Sep 14;40(19).
  3. Torres S et al. Mitochondrial Cholesterol in Alzheimer’s Disease and Niemann-Pick Type C Disease. Front Neurol. 2019 Nov 7;10:1168.
  4. Platt FM et al. Lysosomal storage diseases. Nat Rev Dis Primers. 2018 Oct 1;4(1):27.
  5. Clark LN et al. Gene-wise association of variants in four lysosomal storage disorder genes in neuropathologically confirmed Lewy body disease. PLoS One. 2015;10(5).

More information is available on the Childhood Dementia Initiative website or by contacting their Head of Research, Dr Kristina Elvidge:

If you are part of an organisation who would like to share your work with the SDRC community, please click here to get in touch with us.

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