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Childhood Dementia Support

We offer practical strategies and advice to families caring for children diagnosed with dementia.

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Practical advice for families and health practitioners

Every three days an Australian child is born with childhood dementia – a rare genetic disease that describes over 100 different conditions. Symptoms are similar to dementia in adults, with progressive loss of memory, concentration, speech and movement, often leading to confusion, distress and changes in behaviour.

At DSA, we provide professional advice and practical strategies and recommendation to support families caring for a child diagnosed with dementia. By working together with families and other organisations, we help improve children’s quality of life.

Who is Childhood Dementia Support for?

We support children living with dementia and their families. We work closely with organisations such as the Batten Disease Support Research Association Australia and the Childhood Dementia Initiative.

Frequently Asked Questions

What is childhood dementia?

Childhood dementia is an ‘umbrella term’ for a group of genetic, progressive neurodegenerative conditions that lead to impaired mental and physical function. They are complex disorders, with high care needs and lead to a poor quality of life that affects the whole family. Children and young people affected by childhood dementia have a dramatically reduced life expectancy.

What are the symptoms of childhood dementia?

Typical symptoms include progressive loss of cognition and other developmental skills (including speech/language, memory, attention, fine and gross motor skills) and behavioural changes, in addition to seizures, deafness, vision loss, and progressive decline in motor function.

How does DSA support children with dementia and their families?

Dementia Support Australia supports families with children (including adolescents and young adults) diagnosed with childhood dementia. Dementia Support Australia has trained consultants who understand childhood dementia and its related symptoms, the impact on the affected person with dementia, and their carers and families. DSA provides professional, and tailored, practical strategies and recommendations designed to support families caring for their child with a focus on improving their quality of life.

How do I refer someone who care for a child with dementia?

You can contact us at our DSA helpline on 1800 699 799, Live Chat with us or refer online to access support.

How much will this support cost?

We are funded by the Australian Government Department of Health and provide a free service.

Do you replace my NDIS support?

No. We specialise in support around behaviours – and we’ll look to work collaboratively with your NDIS supports and other people involved in the care of your child.