Childhood dementia frequently asked questions

Is childhood dementia the same as childhood Alzheimer’s?

Childhood dementia is sometimes referred to as Alzheimer’s in kids. The signs and symptoms are similar to Alzheimer's disease, and so this name is used to help people quickly understand the challenges kids with dementia can face. While ‘Alzheimer’s’ and ‘dementia’ are often colloquially used interchangeably, many people don’t know that Alzheimer’s disease is actually a specific disease. It’s the most common cause of dementia in adults. In children, dementia is caused by rare genetic disorders

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. A diagnosis is found either through biochemical testing or genetic testing. Biochemical testing can be done using blood or urine samples and essentially involves looking for unusual levels of substances in these fluids, such as certain types of proteins or sugars. Finding that a child is missing or not producing enough of an essential enzyme, for instance, is something that can be detected in this way. Biochemical testing in many cases can either give a diagnosis, or help doctors narrow down to a group of diseases. Genetic testing is then used to confirm a diagnosis and can give more detailed information on specific changes to genes. 

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. This can include loss of memory, concentration and skills like the ability to talk and walk. Other early signs can include hearing and vision loss, speech delay, problems feeding, trouble controlling movement and behavioural problems. It’s 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). 

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. Assertions that childhood dementia is caused by vaccines are not only incorrect, they divert attention from urgently needed solutions. Scientists are working hard to develop treatments, and for some types, clinical trials have started and are showing encouraging results. What is needed now is coordinated action and funding to get effective treatments to all children with dementia.

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