Experts urge early advance care planning for people with dementia

Two peak aged care bodies have called for earlier, better‑supported advance care planning for people living with dementia, warning that inconsistent practice and weak system support are leaving many without a say in their future health care.

In a new joint position statement, Advance Care Planning Australia and Dementia Australia argued that advance care planning must become a routine part of dementia diagnosis and care. The bodies emphasised a rights‑based, supported decision‑making approach, where people with dementia are helped to express their values, preferences and cultural needs for as long as possible.

Dementia Australia executive director of policy and government relations Eliza Hazlett said early planning is essential for maintaining dignity and control.

“Advance care planning enables people living with dementia to make decisions and retain agency 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.

Ms Hazlett said current practice remains patchy, with no national dataset tracking how often advance care plans are created or followed. Carer reports suggest around 45 per cent of people with dementia have some form of documentation, but the true figure is unclear.

She said stronger policy, better workforce training and improved community awareness were needed to move from “ad hoc practice to a consistent, system‑wide approach”.

Dr Catherine Joyce, national manager at Advance Care Planning Australia, said the updated statement reflects the lived experience of people with dementia and their carers.

“People consistently tell us they want to be involved in decisions about their care for as long as possible,” she said.

“Advance care planning supports this, particularly when it is introduced early and revisited over time.”

The position statement outlined key principles, including respecting autonomy, prioritising supported decision‑making, ensuring culturally safe communication, and strengthening the role of substitute decision‑makers.

It also highlighted barriers such as limited clinician training, time pressures, inconsistent document storage, and challenges faced by culturally and linguistically diverse communities, who may revert to a first language as symptoms progress.

The statement said many clinicians report low confidence in initiating sensitive advance care planning conversations, uncertainty about legal requirements, and fears of causing distress, and that health professionals need dedicated training, time and organisational support to embed advance care planning into routine care.

The organisations said national reforms, including the National Dementia Action Plan, have reinforced the need for a rights‑based approach, but more work is required to ensure advance care planning is embedded across health, aged care and disability systems.