March 2024: A new report gives concerning insight into families’ experiences with the health system in New South Wales, Australia, when a child has dementia.

The report, Childhood Dementia: Family experiences of health systems in New South Wales, is intended to give input into further consultation and exploration by NSW Health and other bodies to improve systems of care in NSW.

“We commend NSW Health for requesting this report,” says Childhood Dementia Initiative CEO, Megan Maack. “It demonstrates genuine commitment to addressing the needs of families enduring childhood dementia.”

Two key issues were identified: a severe lack of knowledge and understanding, and chronic absence of expert care. This resulted in the following impacts for families:

  • increased parental burden
  • disempowerment of families
  • risk to children’s safety
  • neglect and inequity of care

Findings in the report draw on a series of roundtable discussions and interviews conducted by Childhood Dementia Initiative, as well as a follow-up survey with parents and caregivers. The report features direct quotes to ensure that families voices are on record and heard.

NSW Health is undertaking further qualitative research in this area with a broader stakeholder group. Once complete, these results, in combination with this report, will form a comprehensive foundation for action.

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