What is childhood dementia?
On this page:
- What is childhood dementia?
- VIDEO: Childhood dementia: a 3-minute introduction
- Childhood dementia symptoms
- Childhood dementia causes
- Childhood dementia facts and statistics
- Learn more about childhood dementia: (Reports, the Childhood Dementia Knowledgebase, and frequently asked questions about childhood dementia).
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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
1 in every 2,900 babies
is born with a condition that causes childhood dementia
CHILDHOOD DEMENTIA RESULTS FROM PROGRESSIVE BRAIN DAMAGE CAUSED BY 100+ GENETIC CONDITIONS
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.
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 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
-
‘The collective burden of childhood dementia: a scoping review'
This is a burden of disease study. It gives information on the conditions that cause childhood dementia, how common they are and their characteristics. It was published in the international journal, Brain. Learn more about this important study. -
‘State of Childhood Dementia 2022'
This Childhood Dementia Initiative report explores the current state of childhood dementia across policy responses, research progress and the support available for children and families. There are significant barriers in all of these areas to achieving much-needed outcomes for children with dementia globally. Learn more about this report and its findings.
You can also access a range of our reports, studies, webinars and submissions. They cover a range of topics:
All publications & webinars
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
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.
