Recruitment is underway for important research on the broad personal impacts of childhood dementia on parents and primary carers. This includes the psychological, financial and social impacts. The findings from this research project, called Childhood Dementia Insight, will help identify family support needs.

Researchers at The Sydney Children’s Hospital Network (SCHN) and University of New South Wales are seeking volunteer research participants.

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Is my child's condition considered a childhood dementia disorder? 

More than 100 rare genetic conditions cause childhood dementia. You'll find a list of these childhood dementia conditions here.

Conditions that cause childhood dementia are neurodegenerative and life-limiting. They might be described as causing ‘progressive neurocognitive decline', which means progressive brain damage. Children experience a collection of symptoms that may include loss of skills, confusion, personality and behaviour changes - symptoms that are also experienced in adult dementia.

Examples of conditions that cause childhood dementia are Batten disease, Sanfilippo syndrome, Niemann-Pick disease A & C, Tay-Sachs disease, metachromatic leukodystrophy, Rett syndrome and some mitochondrial disorders.

Research eligibility

You are eligible to participate in this research if:
  • you are a parent of a child who has a disorder that causes childhood dementia, OR
  • you are the parent of a child who has passed away with childhood dementia

What does participating in this research involve?

If you decide to take part, you will be invited to complete a short survey. There is also the opportunity to take part in an individual interview.

Both the survey and the interview will ask questions about the psychosocial impacts of childhood dementia and families’ support needs. You can learn more and take part here: 

 Learn more

The survey should take approximately 10-15 minutes to complete. You can decide to participate in the interview over the phone or in person. The interview should take no longer than 30 minutes to complete. 

Please share this story or flyer with information on this research project with anyone you think may be interested in taking part. It's vital that we reach a broad cross section of families to ensure this research captures family experiences.