Dementia support expanded to children

25 June 2021

Dementia Support Australia (DSA) will now extend specialist support usually delivered to adults, to families of children living with dementia.

Working initially with a focus on children suffering from dementia caused by Batten disease and in partnership with Batten Disease Support and Research Association Australia, DSA has now expanded their service to all children with dementia. DSA will help children and their families with practical support strategies and deliver behavioural support programs that are tailored to the individual child and their care environment. 

Specially trained DSA Dementia Consultants will now work in partnership with families and carers. They provide short-term case management focused on changes in children’s behaviour related to dementia. The team helps put a ‘dementia lens’ over each family's situation and provides recommendations to support children.

Childhood Dementia Initiative’s CEO, Megan Donnell, accessed this service to support her children, Isla (12) and Jude (10), who have childhood dementia caused by Sanfilippo Syndrome.

“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,” said Megan.

DSA introduced new equipment, games, strategies and information to help. The support given by DSA included a recommendation that Isla see a dentist, guidance on using cue cards when communicating with Isla, and advice and items for a sensory room with soft toys and furnishings for Isla and Jude. DSA also provided a chart to be shared between all of Isla's carers to track her behaviour and the outcomes of strategies tried.

Childhood Dementia Initiative is advocating for systemic change and 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.”

More information on DSA support

Information on the DSA’s support services for children with dementia can be found on the DSA website. DSA does not write Behaviour Support Plans that may be required for the NDIS, but it is a free service. You can call the 24-hour helpline on 1800 699 699, or you can visit their website

Stay connected and have your voice heard 

Childhood Dementia Initiative wants to ensure that children with dementia, their families and carers have a voice. Our National Childhood Dementia Consumer (Family) Network will be an avenue to ensure your voice is heard by health and policy decision-makers. If you are a family member or carer of a child with dementia, or if you are a bereaved family member, we'd love to connect with you. We'll keep you updated on progress and opportunities to get involved. Connect with us here.