A new report has revealed that families affected by childhood dementia experience significant challenges accessing appropriate care and support in Australia.

Developed for Childhood Dementia Initiative by international management consultancy, Nous Group, the report ‘We don’t fit’: The lived experience of families affected by childhood dementia and their interactions with care and support services, gives insight into ‘typical’ family experiences navigating care and support services. Nous Group drew on interviews with Australian families whose children were affected by a range of childhood dementia conditions and who were at different stages of their journey. 

Families reported challenges navigating complex and often fragmented systems. Typically, family distress begins prior to diagnosis, when parents report they are dismissed for expressing concerns about symptoms. This distress continues throughout the exhausting project management of their children’s care, which can extend into early adulthood. It intensifies beyond the death of children when families are faced with a lifetime of grief. Grief is compounded when parents regret that their attention was diverted away from embracing their childrens limited life, with time spent ‘fighting’ a system in which they report they ‘don’t fit’.

“This report reveals children with dementia and their families in Australia are lost in systems that can and must be adjusted to accommodate them,” says Childhood Dementia CEO, Megan Maack. “Sadly, most children affected by childhood dementia die before turning 18. This limited life span makes it even more urgent that we improve access to high quality care for children and families.”

Webinar: unpacking the report 'We don't fit'