Pathway Toward Better Care: Mapping and Improving Childhood Dementia Support in Australia
Purpose
The Childhood Dementia Initiative (CDI) engaged HealthConsult to map Australia’s childhood-dementia care-and-support landscape, pinpoint systemic gaps, and outline practical actions to improve the quality of life of affected children and their families. The assignment culminated in the Pathway Toward Report, a national reference intended to inform policy, service design and research investment.
Approach
A mixed-methods approach combined rigorous evidence synthesis with wide-ranging stakeholder engagement to create a clear, actionable picture of Australia’s childhood-dementia care landscape.
- Mixed-methods evidence review. A rapid PubMed scan of 58 peer-reviewed papers was combined with analysis of CDI burden-of-disease studies, family-experience reports and state/territory rare-disease or dementia plans.
- Nation-wide stakeholder engagement. Over 110 clinicians, service providers, advocates and peak-body representatives contributed through virtual interviews and focus groups; a separate online survey captured frontline insights from nursing, medical and allied-health staff.
- Ten-theme gap analysis. Findings were triangulated and ten service themes were identified - ranging from professional awareness and diagnostic pathways to psychosocial support, respite, palliative care and research - highlighting critical shortfalls and potential solutions.
Outcome
The report found that support for the 145+ genetic disorders causing childhood dementia is fragmented and inequitable. Health-professional respondents ranked two priorities above all others: (1) broader access to multidisciplinary, coordinated, holistic care and (2) the creation of a standardised national model of care for childhood dementia.
