Understanding childhood dementia

For health and care professionals

Understanding childhood dementia

Families' lived experience 

Working with families

On this page: 

Below you will find information and resources on childhood dementia for health and care professionals.
They’re designed to give you a broad understanding of childhood dementia. 

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We can notify you when new resources become available and keep you up to date on emerging research, news and progress for children with dementia. Let us know where to reach you and keep you updated.


What is childhood dementia?

The term childhood dementia is an umbrella term, representing a group of genetic conditions which cause neurocognitive decline. You can see the list of conditions known to cause dementia here

‘Childhood dementia is an umbrella term representing a heterogenous group of childhood neurodegenerative disorders. Defined as global neurocognitive decline with multiple developmental skill loss following a period of developmental progress, the hallmark of childhood dementia is enduring and progressive loss of previously acquired developmental skills, in contrast to static or transient intellectual loss.’ (Nunn et al, 2002)

Developmental trajectories of individuals with typical development, intellectual disability and childhood dementia. 

The trajectory of childhood dementia classically proceeds in line with normal development for a long or short interval then decelerates and ultimately regresses (adapted from Haugen et al., 2019).

Childhood dementia facts

Statistics from Elvidge et al., 2023.


The causes, symptoms, impacts, and prevalence of childhood dementia: a 3-minute introduction

Presentation: An introduction to childhood dementia

Childhood dementia fact sheet

This fact sheet gives an overview of key statistics on childhood including prevalence and incidence.

Presentation: an introduction to childhood dementia

This PowerPoint presentation was developed so that you can help build broader awareness and understanding of childhood dementia. It gives an overview of childhood dementia including prevalence, incidence, symptoms and mortality. 

Facilitator's guide

This Facilitator's Guide accompanies the presentation 'An Introduction to Childhood Dementia'. It is intended to assist the facilitator to present an information session of 30 minutes to 60 minutes in length, depending on the depth of discussion and level of interaction of participants. 

Learn more


Elvidge KL, Christodoulou J, Farrar MA, Tilden D, Maack M, Valeri M, Ellis M, Smith NJC; Childhood Dementia Working Group. The collective burden of childhood dementia: a scoping review. Brain. 2023 Jul 20:awad242. doi: 10.1093/brain/awad242. Epub ahead of print. PMID: 37471493. https://doi.org/10.1093/brain/awad242

Haugen PK, von Tetzchner S, Oxley JD, Elmerskog B. Dementia in Adulthood and Childhood. In: von Tetzchner S, Elmerskog B, Tøssebro A-G, Rokne S, editors.Juvenile Neuronal Ceroid Lipofuscinosis, Childhood Dementia and Education: Intervention, education and learning strategies in a lifetime perspective. Norway: Snøfugl Forlag; 2019. p. 76

Nunn K, Williams K, Ouvrier R. The Australian Childhood Dementia Study. Eur Child Adolesc Psychiatry 2002; 11: 63–70.

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