With dementia now Australia’s leading cause of death, it’s more important than ever to connect those living with dementia with the palliative and end-of-life care they need.
To address this critical gap, we are excited to be embarking on the next phase of The Advance Project.
Backed by a $5 million Australian Government grant and developed in partnership with Dementia Australia and Flinders University's CareSearch/palliAGED, we are focusing on building dementia-specific palliative care capability across aged and primary care settings, while supporting carers and families to better navigate the complex journey of advanced dementia.
The Advance Project, an Australian Government-funded initiative led by HammondCare, has a wealth of free training and resources for the aged and primary care workforce to support end-of-life conversations and assessment of palliative care needs for people living with dementia.
Building capability across the sector
A key early priority will be a national stakeholder engagement program to identify current gaps, establish priorities and shape implementation strategies.
We are focusing on three key areas:
Responding to a growing national challenge
Dementia is now Australia's leading cause of death and one of the country's most significant health challenges. The need for a coordinated, person-centred approach to palliative care has never been greater.
According to the Australian Institute of Health and Welfare, an estimated 459,000 Australians will be living with dementia in 2026. That number is projected to increase to almost 1.1 million by 2066.
Despite this growing prevalence, many people living with advanced dementia do not have timely access to quality palliative care.
Professor Josephine Clayton, Advance Project Lead and Director of Palliative Care Research and Development, said misconceptions about dementia and the challenges associated with cognitive decline often prevent people from receiving the care they need.
"Unfortunately, many people living with dementia miss out on palliative care, resulting in uncontrolled pain and other symptoms, and too often receive distressing and unsuccessful treatments in hospital towards the end of life," Professor Clayton said.
"This is most likely due to cognition and communication barriers, uncertainty about illness trajectory and a misperception that dementia is not a terminal condition."
Accessing palliative care can be particularly complex for people living with dementia, making early conversations about future care preferences and goals especially important before cognitive decline progresses.
Looking ahead
Improving palliative and end-of-life care for people living with dementia requires a shared approach. Meaningful change happens when healthcare professionals, aged care teams, carers and families are equipped with the knowledge, skills and confidence to have important conversations earlier and make care decisions together that reflect the person's wishes and goals.
By combining expertise across HammondCare, Dementia Australia and CareSearch/pallieAGED with insights from extensive stakeholder engagement we hope to create lasting improvements in how Australia supports people living with dementia at the end of life. Through the dual focus on building capability across aged and primary healthcare settings, while also supporting carers and families, we seek to strengthen every part of the care journey.
The goal is a more coordinated, person-centred approach to care, helping ensure people living with dementia, regardless of where they receive care, have access to compassionate, evidence-based palliative care that respects their preferences, supports quality of life and enables them to live and die with dignity.
The initiative will equip healthcare professionals, carers and families with the tools, knowledge and confidence to support people living with dementia with dignity, comfort and according to their wishes.
Visit the Advance Project for practical, evidence-based resources and training that empower aged and primary care professionals to initiate advance care planning and palliative care.
The Advance Project is funded by the Australian Government Department of Health, Disability and Ageing.