Understanding childhood dementia
Here you'll find education resources and information about childhood dementia specifically for health and care professionals. They’re designed to give you a broad understanding of childhood dementia.
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.
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 and statistics
1 in every 2,900 babies
is born with a condition that causes childhood dementia
CHILDHOOD DEMENTIA RESULTS FROM PROGRESSIVE BRAIN DAMAGE CAUSED BY 100+ GENETIC CONDITIONS
Children with dementia experience:
- Memory loss
- Confusion
- Trouble concentrating, understanding, learning and communicating
- Personality changes
- Severely disturbed sleep
- Behavioural issues such as hyperactivity
- Emotional issues like anxiety and fear
HALF OF ALL CHILDREN WITH DEMENTIA DIE BY THE AGE OF 10.
Childhood dementia is progressive.
Children lose their ability to talk, walk, read, write and play, and eventually the body loses its ability to function.
Symptoms can vary and progress over months, years or even decades, impacting both the child and their family.
Estimated in Australia every year:
91 deaths in people with childhood dementia
92 deaths from childhood cancer (0-14 yrs)
Estimated in the USA every year:
1,077 deaths in people with childhood dementia
1,050 deaths from childhood cancer (0-14 yrs)
Estimated in the UK every year:
204 deaths in people with childhood dementia
260 deaths from childhood cancer (0-14 yrs)
Statistics from: 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. PMID: 37471493. https://doi.org/10.1093/brain/awad242
Resources
What is childhood dementia?
This 3-minute explainer video provides and overview of the causes, symptoms, impacts, and prevalence of childhood dementia.
An introduction to childhood dementia
This 35-minute presentation provides an overview of childhood dementia including prevalence, incidence, symptoms, and mortality.
You can download the presentation from the video below, along with a facilitator's guide to help you deliver a DIY information session for your team.
Childhood Dementia Knowledgebase
This free database contains essential information about the conditions that cause childhood dementia, gathered from the literature with expert input.
Childhood dementia disorders
View the list of over 100 rare neurodegenerative genetic disorders that have been identified as causing childhood dementia.
The collective burden of childhood dementia
This review provides information on the conditions that cause childhood dementia, how common they are and their characteristics.
References
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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