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Resource Summary

  • 5 min. read



Childhood Dementia Initiative

#Childhood Dementia #Family Carer #Healthcare Services

“Children are diagnosed with dementia too. Now is the time for awareness and action.” - Megan Maack, CEO, Childhood Dementia Initiative

Until recently, dementia was typically associated with adults or ageing. We now know that dementia affects people across the lifespan including infants, children, teenagers and young adults. 

Just like adults living with dementia, children can experience memory loss, confusion, trouble concentrating, learning and communicating. Personality and behavioural changes and emotional issues such as fear and anxiety impact this patient cohort too. Their families watch and care for them as they progressively lose their skills – including some they’ve only just gained – and with the knowledge that there are many they will never have the opportunity to learn. And just as it is for adults, dementia in childhood is life-limiting. Sadly, most children with dementia don’t reach adulthood. 

What is Childhood Dementia? Childhood Dementia explained.

An introduction to childhood dementia. This information video explains the causes, symptoms, impacts, and prevalence of childhood dementia. Childhood Dementia Initiative developed this resource with funding from the Australian Government. 

Watch video to learn more

Why is awareness of childhood dementia so low?
If you hadn’t heard of childhood dementia until now, you’re not alone. It is overlooked both as a health and social issue, and lack of awareness is stifling responses to children and families. 

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

There are over 1001 diseases that cause childhood dementia. In Australia, 1 in 2,9002 babies born will have a genetic condition that causes childhood dementia. The disorders that cause childhood dementia are genetic and usually require a genetic test to confirm diagnosis.

It is estimated that 91 young Australians die each year due to childhood dementia, a similar number to those that die from childhood cancer aged 0-14 years (92 per year)3. Less than a third of children with dementia survive into adulthood4. The median age of death for a child with dementia is just nine years old5. Children and young people living with dementia experience many of the same behavioural and psychological symptoms as adults with the condition.

A new response to children is needed
Childhood Dementia Initiative is driving a global response to childhood dementia disorders as a collective. This represents a paradigm shift in how these children are viewed, cared for and treated. Applying activity to all childhood dementia disorders and considering all children living with dementia together, creates opportunities for greater scale and impact. For 
example, it encourages the improvement and adaptation of support services by acknowledging the unique needs of this patient cohort and their families. For researchers, it fosters the study of multiple disorders at one time and the sharing of resources that were previously duplicated for each disorder. For policymakers, it compels the inclusion of affected families in dementia plans and strategies. 

History demonstrates that this model works. The progress made to date on adult dementia is evidence of that. While there is still a long way to go, care and support, research, awareness, education and training, and policy on adult dementia have all progressed over recent decades across multiple causes and diseases. 

Dementia is not a normal part of life. Even children get dementia and all people, including children with dementia and their families, need acknowledgement, support, dignity and respect. 

You can join the growing global movement of peak bodies, health professionals, service providers, researchers and families creating awareness and change for children living with dementia.

Learn more at: https://www.childhooddementia.org/
1,2,3,4,5 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

Resource Summary

  • 5 min. read



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