What is childhood dementia?

Key Points:

• Childhood dementia is a result of progressive brain damage and is caused by over 70 rare genetic disorders children can be born with
• Childhood dementia can look different from child to child
• It is best to first connect with a General Practitioner (GP) who will make a referral for further investigation if a child is showing signs and symptoms of childhood dementia

Dementia is often a condition associated with old age, but 700,000 children are estimated to be currently living with childhood dementia around the world.

About one in every 2,800 babies are born with a condition that causes childhood dementia, which is more than the children born with well-known conditions like Cystic Fibrosis.

In Australia, an estimated 2,300 children are living with childhood dementia – a similar number to the children living with Motor Neurone Disease.

Dementia is the umbrella term for a large group of cognitive illnesses and conditions, which cause a progressive decline in mental functioning. People with dementia may have a loss of memory, intellect, rationality, social skills, ‘normal’ emotional reactions, and speech and behavioural changes.

People with childhood dementia may be eligible to receive National Disability Insurance Scheme (NDIS) funding to access services and support.

Someone dies from childhood dementia every 11 minutes with 48,300 dying each year globally.

Childhood dementia causes about 90 deaths per year in Australia, a similar number of deaths as childhood cancer.

The Childhood Dementia Initiative (CDI), an organisation raising awareness about childhood dementia, says for every child with dementia, it can look different.

The organisation says it is common for children to remain undiagnosed for significant periods – sometimes years – and to be misdiagnosed with autism, epilepsy, developmental or intellectual delay, or attention deficit hyperactivity disorder (ADHD).

But how does childhood dementia develop and what do you look out for?

What is childhood dementia?

Childhood dementia results from progressive brain damage and can be caused by over 70 rare genetic disorders children may be born with.

Children are usually diagnosed with childhood dementia following tests by specialist teams at children’s hospital.

If you are concerned your child is showing signs of dementia, it is best to first connect with a General Practitioner (GP) who will make a referral for further investigation.

There has been little funding and research into treating, or even slowing, childhood dementia.

The average life expectancy for children with dementia is just 28, but most will die before turning 18 (75 percent).

What are the symptoms of Childhood Dementia?

Like symptoms of adult dementia, children also suffer from symptoms like confusion, loss of memory and loss of speech.

Childhood dementia is progressive, and signs and symptoms can appear at different ages. In some instances, dementia symptoms can appear in the youngest of children and babies and progress quickly, while for others symptoms may not start until they are in their teenage years.

CDI says that symptoms of dementia in children can range from seizures to developmental delays.

Early signs of childhood dementia can include hearing and vision loss, speech delay, problems feeding, trouble controlling movement and behavioural problems.

Other symptoms can include:

• Trouble concentrating, understanding, learning and communicating
• Personality changes
• Severely disturbed sleep
• Emotional issues like anxiety and fear
• Loss of concentration
• Loss of the ability to talk, walk and/or move entirely
• Loss of vision and hearing
• Problems with bones or joints
• Problems with cardiovascular, respiratory, or digestive systems

If you are concerned your child is displaying these symptoms, you should visit your doctor for an assessment.

What are the causes of childhood dementia?

Over 70 rare neurodegenerative genetic disorders have been identified as causes of childhood dementia. These disorders damage a child’s brain and prevent their bodies from being able to carry out important functions.

These disorders include:

• Inborn errors of metabolism
• Neurodegeneration with brain iron accumulation
• Mucopolysaccharidoses – a group of inherited metabolic diseases caused by the absence or malfunctioning of certain enzymes the body needs to break down molecules called glycosaminoglycans
• Peroxisomal diseases – a group of genetically heterogeneous metabolic diseases that share dysfunction of peroxisomes (cellular organelles making up the metabolic pathway)
• Leukodystrophy – a group of progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves that leads to abnormal development or destruction of the white matter (myelin sheath) of the brain

Children living with dementia can access supports through Dementia Australia and Dementia Support Australia, who have trained childhood dementia consultants who understand the symptoms and impacts of this condition.

These services can provide professional and practical strategies and recommendations to support families caring for their child to improve their quality of life.

Visit the Childhood Dementia Initiative website for more information, services and organisations that can assist.

When did you notice your child was living with dementia? Let us know in the comments below.

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