What is childhood dementia? 

Childhood dementia results from progressive brain damage and is caused by over 70 rare genetic disorders. These conditions are inherited and children are born with them. Childhood dementia is sometimes referred to as ‘childhood Alzheimer’s’.

You may be familiar with some of the symptoms of adult dementia. Kids also suffer from these symptoms like confusion, loss of memory, loss of speech and more.

Each child’s experience with dementia is unique. In some instances, dementia symptoms can appear in the youngest of children and babies like Sebby (pictured) and progress quickly. While for other children like Angelina, symptoms may not start until they are teenagers. All children with dementia, however, face one common challenge: childhood dementia is progressive. Over months, years or decades, as their brains are damaged more and more, they progressively lose skills they’ve already developed such as the ability to write, read, talk, walk and play. Their brains also lose the ability to keep the body functioning properly and, eventually, to keep the body alive.

Due to little funding, research into treating or even slowing childhood dementia has been very limited. Most children die before turning 18. With awareness and more research, we can and will improve survival and quality of life for children with dementia. You can join the movement transforming life for children with dementia. 

Childhood dementia facts and statistics

GLOBALLY

700,000 people are estimated to be living with childhood dementia today.

Around one in every 2,800 babies are born with a condition that causes childhood dementia. This is more than are born with well-known conditions like cystic fibrosis.

Every 11 minutes, someone dies from childhood dementia. 48,300 die each year.

The average life expectancy for children with dementia is just 28. Sadly, approximately 75% of children have a life expectancy of under 18.

IN AUSTRALIA

Childhood dementia costs the Australian economy $389 million each year.

and will cost at least $3.9 billion in the next decade. An estimated 2,300 Australians are living with childhood dementia, which is similar to the number with motor neurone disease. 

Around 1 in every 100 people diagnosed with dementia are kids.

Just as childhood cancer makes up 1% of all cancer diagnoses in Australia, childhood dementia accounts for around 1% of all dementia diagnoses.

For more statistics and information on childhood dementia:

  • Our white paper summarises the size, scale and impacts of childhood dementia and opportunities to act.
  • Our burden of disease study, prepared by Thema Consulting, quantifies the burden of childhood dementia on patients, carers, the healthcare system and our society.

Childhood dementia symptoms

Just like adults with dementia, children with dementia suffer from:

  • 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

In addition to these symptoms, children can also:

  • Suffer from seizures
  • Lose their vision and hearing
  • Lose their ability to move entirely
  • Have problems with their bones, joints, or their cardiovascular, respiratory, or digestive systems

Signs and symptoms of childhood dementia can appear at different ages.

 

Childhood dementia causes

So far, over 70 rare neurodegenerative genetic disorders have been identified as causing childhood dementia.

Broadly, there are different groups or types of childhood dementia disorders which include:

  • Inborn errors of metabolism
  • Lysosomal disorders
  • Mucopolysaccharidoses
  • Peroxisomal disease
  • Neurodegeneration with brain iron accumulation (NBIA)^
  • Leukodystrophy

You can view a list of these disorders.

Childhood Dementia Knowledgebase

We are building a database containing essential information about the 70+ conditions that cause childhood dementia. Information is being gathered from the literature and with input from experts in the field. This will be made available as soon as possible. In the meantime, please contact us if you need data at: hello@childhooddementia.org



Childhood dementia frequently asked questions

Is childhood dementia the same as childhood Alzheimer's?

You may sometimes hear childhood dementia referred to as 'childhood Alzheimer's disease'. While ‘Alzheimer’s’ and ‘dementia’ are often colloquially used interchangeably, many people don’t know that Alzheimer’s is actually a specific disease. Learn more.

How is childhood dementia diagnosed?

Children are usually diagnosed following tests by a specialist team at a children’s hospital. If a parent is concerned their child is showing signs of dementia, it’s best to first connect with a GP who will make a referral for further investigation. Learn more.

What are the initial signs of childhood dementia?

It varies and for every child with dementia, it can look different. It can range from seizures to developmental delays. Learn more.

Do vaccines cause childhood dementia?

No. Sadly, rare genetic disorders are damaging children’s brains and preventing their bodies from being able to carry out important functions. Learn more.