Advance Care Planning Australia has collaborated with Dementia Australia to release an updated joint position statement on advance care planning and dementia.
The position statement highlights the critical importance of starting advance care planning early for people living with dementia, at a time when they can be meaningfully supported to express their values, preferences and wishes for future health care. It reinforces a rights‑based, supported decision‑making approach and calls for stronger policy, system and workforce responses to ensure advance care planning is consistently embedded across health, aged care and disability settings.
Eliza Hazlett, Executive Director Policy and Government Relations Dementia Australia, said the statement comes at an important time with 446,500 Australians living with dementia in 2026, a number expected to increase to more than one million by 2065.
“Advance care planning enables people living with dementia to make decisions and retain agency, dignity and control over their future health and care needs, including at the end stages of the disease when they may not be able to communicate their wishes,” she said.
“We know this is critically important to people living with dementia and also their carers and loved ones. This position statement sets out what needs to happen to move from ad hoc practice to embed a consistent, system-wide approach.”
“There is no national data set on the use of advance care plans. Carer reports suggest 45 per cent of people living with dementia have advance care planning documents. However we need more accurate data, including how often advance care planning is being documented and followed. We also need to continue to educate and support the health and aged care workforce and the broader community about the advance care planning process.”
Dementia Australia staff are available to support individuals and families with advances care planning through individualised and group support services. These can be accessed by contacting the National Dementia Helpline on 1800 100 500 or visiting dementia.org.au.
Dr Catherine Joyce, National Manager, Advance Care Planning Australia said the statement reflects the lived experience of people living with dementia, as well as their families and carers.
“People living with dementia consistently tell us they want to be involved in decisions about their care for as long as possible. Advance care planning supports this, particularly when it is introduced early and revisited over time,” she said.
“It also provides important reassurance for families and carers, helping to reduce uncertainty and stress during difficult times.”
The position statement is intended to support policy development, strategic planning and system advocacy at national and jurisdictional levels.
Read the advance care planning and dementia joint position statement