Date: 24 Feb 2025 A landmark report has identified families’ 5 priority areas to improve healthcare and support for children with dementia in Australia. Created by Collaboraide for Childhood Dementia Initiative, What Matters Most Report: Integrating The Lived Experience And Health Professional Perspectives In Childhood Dementia, combines research and consultations with families and health professionals to give a view of care needs and priorities. The report is the first to provide recommendations on adapting Australia’s healthcare and support systems to meaningfully improve quality of life and outcomes for children with dementia.
Families identified 5 critical priorities for system improvement:
- Establish dedicated care coordination to give better and more efficient access to services and reduce the administrative burden on families
- Advance healthcare professional education through specialised training, clinical resources and networks of informed specialists
- Strengthen family support to ensure psycho-social support from diagnosis through to bereavement for the whole family
- Integrate a palliative approach from diagnosis to enhance quality of life for children and help families manage end-of-life care and planning
- Enhance National Dementia Insurance Scheme (NDIS) responsiveness to ensure care is tailored for the unique and changing needs of children with dementia, including funding that caters for regression
“We’ve long known that families struggle to get children with dementia the healthcare and support they need. This report is the culmination of intensive research and consultations with stakeholders to uncover what most urgently needs to change to address this devastating and unacceptable reality,” says Gail Hilton, Head of Programs at Childhood Dementia Initiative.
The What Matters Most report applies a family ‘lens’ to the outcomes of consultations with health professionals that were reported in Childhood Dementia Care and Support Landscape: Pathway Toward Report. Health professionals identified 10 key gaps and issues with the existing national care and support landscape for children with dementia in Australia. Feedback from families validated and extended the Pathway Toward Report findings to define priority areas for system improvement.
Care coordination emerged as the most immediate opportunity for positive impact. “Care coordination is the quickest win," noted one parent during consultations, “because even if you can't fix anything else overnight, at least if you've got someone who knows what's out there, they can point you in the direction of what is available."
“The study found that families and health professionals were aligned on areas where improvements are needed. Additionally, family consultations gave crucial insights and context. For instance, only families can really tell us about the nuanced and practical reality of navigating multiple care systems over extended periods as their children regress. Childhood Dementia Initiative is committed to being led by what families tell us they need. We know that lived experience is essential to making comprehensive, family-centred improvements,” says Gail.
The What Matters Most report was funded by Australia’s Federal Government. Findings from this research will inform policy recommendations, service design, and resource allocation to better support the children and families impacted by childhood dementia in Australia.
What Matters Most report findings
The study identified 5 critical priorities for system improvement:
- Establish dedicated care coordination
- Advance healthcare professional education
- Strengthen family support networks
- Integrate a palliative approach from diagnosis
- Enhance National Dementia Insurance Scheme (NDIS) responsiveness
The study also identified several overarching themes that characterise the lived experience of families. Parents described becoming ‘operations managers’ for their children, often leaving work to coordinate complex care needs across fragmented health, disability, and education systems. Mothers particularly shoulder the greatest caregiving burden, leading to significant emotional, financial, and social impacts on the entire family.
The report reveals that families face prolonged diagnostic journeys, limited professional expertise in their children’s conditions, and challenges accessing appropriate education and disability support. Many parents expressed frustration at systems that fail to understand the regressive nature of childhood dementia.
Additionally, parents emphasised the importance of maximising their child's quality of life rather than solely pursuing curative treatments.
Implementation considerations
The report identifies several critical areas requiring attention for successful implementation:
- Development of specialised training programs for healthcare providers and support workers
- Creation of integrated care pathways across different service sectors
- Specialised care coordination from psychosocial care professionals
- Establishment of clear communication between various care providers and across sectors
- Integration of proactive care, supports and equipment through NDIS
Background and method
Childhood Dementia Initiative commissioned Collaboraide to design and deliver What Matters Most, in order to:
- Validate the 10 priority domains identified in the Pathway Towards Report through the lens of lived experience
- Identify gaps or discrepancies between professional and family perspectives
- Understand the practical implications of implementing care improvements
- Capture the nuanced reality of navigating multiple care systems over extended periods
- Document the impact of childhood dementia on the entire family unit
A series of 9 focus groups were delivered with 17 parents at various stages of the childhood dementia experience. Participants were invited to consider the 10 priorities for childhood dementia care within the Pathway Toward Report and identify what is working well and where services or systems could improve.
Each transcription was analysed for macro and micro themes: a) integrated with the 10 care and support themes from the Pathway Towards Report, and b) highlighting additional nuances and themes to complement the original report.
