Discussion paper

Dying well: improving palliative and end of life care for people with dementia

Dementia End of life care Palliative care Australia

Dementia is currently the second leading cause of death in Australia. Despite this, many people, even within the health profession, don’t understand the terminal nature of dementia. Consequently, people living with dementia face barriers in accessing appropriate palliative care services and having their end of life needs met.

This discussion paper examines the current state of end of life and palliative care for people with dementia and their families. The important role that State and Territory Governments have to play is examined, and recommendations are provided to improve the provision of quality end of life and palliative care to people with dementia and their families.

Main recommendations:


  • Increase workforce training about the unique palliation needs of people with dementia to the aged care workforce, GPs, and acute care staff.
  • State and Territory Governments continue to work closely with the Commonwealth government to provide dedicated services of specialist palliative care specific to dementia in acute care settings, where staff are appropriately trained in dementia specific palliative care.
  • Provide dementia-specific palliative care training to State and Territory run residential aged care staff and allocate Health department funding for clinical nurse consultants who specialise in dementia palliative care.

Advanced Care Planning

  • Build care pathways that ensure healthcare professionals initiate timely discussions (and ideally at the point of diagnosis) about advance care planning with a person with dementia and their family.
  • Promote advance care planning across all care settings.
  • Start the dialogue about consistent advance care planning legislation to reduce jurisdictional confusion, provide protection to health professionals and community members, and allow care recipients to transition across borders to be closer to family and their community.

Flexible and responsive funding models

  • Enable and enhance palliative care support services in community based settings beyond the common sub-acute hospital setting, through funding models that help people with dementia to die in their own home where they have identified a wish to do so, supported by family and carers.
Publication Details