Login
Login

What is childhood dementia?

On this page: 

Childhood dementia results from progressive brain damage and is caused by over 100 rare genetic disorders. These conditions are genetic and children are born with them. 

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 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. 

The causes, symptoms, impacts, and prevalence of childhood dementia: a 3-minute introduction

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 100 rare neurodegenerative genetic disorders have been identified as causing childhood dementia. Until now, they've received little attention and attracted little research. 

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

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

   View a list of these disorders

For even more detail, you may like to visit the Childhood Dementia Knowledgebase. It's a database that contains essential information about these conditions. It's free and created for clinicians and researchers.

Childhood dementia facts and statistics

Baby

1 in every 2,900 babies

is born with a condition that causes childhood dementia

DNA

CHILDHOOD DEMENTIA RESULTS FROM PROGRESSIVE BRAIN DAMAGE CAUSED BY 100+ GENETIC CONDITIONS

symptoms

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. 

heart icon

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: 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

Childhood dementia facts

Childhood dementia fact sheet

This fact sheet gives an overview of key statistics on childhood including prevalence and incidence.

Learn more about childhood dementia

Reports and publications

Childhood Dementia Knowledgebase

The Childhood Dementia Knowledgebase is a database containing all the essential information about the 100+ conditions that cause childhood dementia, gathered from the literature and with input from experts in the field. This is a free resource.

The Knowledgebase includes:
  • Incidence
  • Prevalence
  • Life expectancy
  • Age of onset and diagnosis
  • Genetic cause
  • Signs and symptoms
  • Disease mechanisms (coming soon)

Learn more & access the Knowledgebase

Childhood dementia frequently asked questions

Find answers to some of the most commonly asked questions about childhood dementia. Answers cover a range of topics including:

  • the causes and types of childhood dementia
  • the signs and symptoms
  • life expectancy
  • diagnosis and testing

Answers to FAQs

    Please keep me up to date on progress and news