Just like adults with dementia, children with dementia progressively lose their memories, concentration, speech and ability to move. They experience confusion, distress and personality changes. Sadly, most die before reaching adulthood.

In 2021, Dementia Support Australia (DSA) extended its support services to families like Megan Donnell’s. Megan’s children Isla (12) and Jude (10) have childhood dementia caused by Sanfilippo Syndrome. Jude is yet to experience major decline but does have an intellectual disability. Isla has regressed significantly.

"Isla lost most of her language in just 12 months. She is incontinent, has problems concentrating and shows classic signs of dementia like confusion, disorientation and severe insomnia,” says Megan.

After visiting and meeting with Megan, Jude, Isla and their carers and allied health support team in their home, a Dementia Consultant from DSA made recommendations to help improve day-to-day life for Isla and Jude. They employed similar strategies used for children with intellectual disabilities and autism, but also incorporated an understanding of dementia and support helpful for people with dementia.

“They describe it as putting a ‘dementia lens’ over what’s happening. And that’s exactly what they did,” Megan explains. “That lens helps to better understand Isla and Jude’s behaviours and what triggers them.”

DSA introduced new equipment, games, strategies and information to help. This ranged from a recommendation that Isla see a dentist, through to guidance on using cue cards when communicating with Isla, advice and items for a ‘sensory room’ with soft toys and furnishings, and relaxing activities for Isla and Jude, and a chart to be shared between all of Isla’s carers tracking her behaviour and the outcomes of strategies tried.

“The support provided by Dementia Support Australia was the most practical, useful and effective service that I’ve accessed since Isla and Jude’s diagnoses.”

Megan is founder and CEO of Childhood Dementia Initiative and is advocating for improved support for children with dementia. “We're delighted to be working alongside Dementia Support Australia as they expand their important services to children. I’m grateful for the opportunity to personally benefit from their support and look forward to seeing outcomes for more families improve as a result.”

Find out more about how DSA is working with Childhood Dementia Initiative to support children with dementia and their families.

DSA's Childhood Dementia Support