Childhood dementia

Key points

Childhood dementia is a rare brain condition that affects one in every 2,900 babies globally.
Symptoms are similar to adult forms of dementia, including memory loss, speech loss and confusion.
It can be caused by more than 100 rare genetic disorders that children are born with.
There is no cure for childhood dementia, but support is available.

Dementia is usually associated with adults. But young children and teenagers can develop dementia too.

Childhood dementia is a brain condition that affects memory, behaviour, emotions and communication.

Childhood dementia can be caused by more than 100 rare genetic disorders. These include Niemann-Pick type-C, Batten disease and Sanfilippo syndrome. Children experiencing childhood dementia are born with these disorders.

Each child’s experience with dementia is unique. Unfortunately, there is no known cure for childhood dementia, and like other forms of dementia, it is progressive. Unfortunately, half of all children with dementia lose their lives by the age of 10.

Causes of childhood dementia

Childhood dementia is a genetic condition. Around one in every 2,900 babies globally are born with a condition that causes childhood dementia. In Australia, an estimated 1,394 children were living with dementia in 2021*.

There are many different childhood dementia disorders, including:

inborn errors of metabolism
lysosomal disorders
mitochondrial disorders
mucopolysaccharidoses
leukodystrophy
neurodegeneration with brain iron accumulation (NBIA)
peroxisomal disease.

Signs and symptoms of childhood dementia

Symptoms can vary, and progress over months, years or even a decade, impacting both the child and their family. Sometimes symptoms appear early and progress quickly, while other children may not experience symptoms until their teenage years.

Like adults with dementia, children with dementia experience:

behavioural issues, like hyperactivity
trouble concentrating, understanding, learning and communicating
confusion
emotional issues like anxiety and fear
memory loss
personality changes
severely disturbed sleep.

Children with dementia may also:

experience problems with their bones or joints
have problems with their cardiovascular, respiratory, or digestive systems
lose their ability to move entirely
lose their vision and hearing
experience seizures.

Childhood dementia is a progressive condition. Children lose their ability to talk, walk, read, write and play and eventually the body loses its ability to function. Sadly, without more research and medical breakthroughs, most children with childhood dementia will continue to lose their lives before the age of 18.

Diagnosing childhood dementia

If you are concerned your child is showing signs of dementia, talk to your doctor. They can make a referral for further investigation.

Children are usually diagnosed following specialised tests such as:

Biochemical testing: These tests look for unusual levels of substances in blood or urine samples, such as certain types of proteins or sugars. For instance, they can detect whether your child is missing or not producing enough of an essential enzyme. Biochemical testing can lead to a diagnosis or help narrow down the symptoms to a group of diseases.
Genetic testing: These tests can give more detailed information on specific changes to your child’s genes and are used to confirm a diagnosis. Sometimes the child’s whole genome will be sequenced to scan for changes that may be causing their condition.

For more information about childhood dementia, or to join the movement to transform the lives of children living with dementia, visit the Childhood Dementia Initiative.

*Kristina L Elvidge, John Christodoulou, Michelle A Farrar, Dominic Tilden, Megan Maack, Madeline Valeri, Magda Ellis, Nicholas J C Smith, the Childhood Dementia Working Group , The collective burden of childhood dementia: a scoping review, Brain, Volume 146, Issue 11, November 2023, Pages 4446–4455, https://doi.org/10.1093/brain/awad242