Advance Care Directive and Dementia in South Australia: When to Act and What to Plan

The Window Closes Faster Than Families Expect

The most frequent mistake families make with advance care planning and dementia is waiting. Not because they don't care — because they don't realise how narrow the legal window is.

Under the Advance Care Directives Act 2013, you can only execute a valid Advance Care Directive while you have decision-making capacity. Once a person's cognitive decline progresses to the point where they can no longer understand what an ACD is, how it works, and what consequences it carries, the opportunity to create one is permanently lost.

The timing is individual. A diagnosis or stage label does not by itself determine capacity; the person must still be able to understand the ACD, how it will be used, and the consequences of making it. Capacity may be lost when those requirements can no longer be met.

How Capacity Is Assessed

South Australia presumes every adult has decision-making capacity unless there's evidence suggesting otherwise. The test isn't a diagnosis — having dementia doesn't automatically mean you lack capacity. It's a functional assessment: can the person, at the time of signing:

1. Understand what an ACD is and what it does
2. Appreciate how the document will be used and what happens when it activates
3. Retain the relevant information long enough to make a decision
4. Communicate their choices

If there's any doubt, a GP or specialist should conduct a formal capacity assessment and document it in writing. This written assessment is particularly important if the ACD might later be challenged by family members — a contemporaneous medical opinion that the person had capacity at the time of execution is strong evidence of validity.

For people with fluctuating conditions — where capacity comes and goes depending on the time of day, medication levels, or fatigue — the assessment should happen during a period of good function. The Act doesn't require permanent, unwavering capacity; it requires capacity at the specific moment of execution.

What to Document When a Dementia Diagnosis Is New

A dementia diagnosis changes the planning conversation. The person now knows their cognitive function will decline, and they can make informed decisions about the care they want during that decline.

Key areas to address in the ACD:

Treatment decisions at each stage. Early-stage dementia is very different from late-stage. You might want aggressive treatment for a broken hip in year two but comfort care only for pneumonia in year eight. The ACD can include stage-specific instructions: "If I have moderate to severe dementia and no longer recognise my immediate family, I refuse [specific treatments]."

Aged care placement. Where do you want to live as care needs increase? At home with support services? In a specific aged care facility? Are there facilities you want to avoid? These preferences are non-binding value statements, but they give your SDM clear direction.

Daily life preferences. Routines, music, food preferences, religious observances, social contact — document these while the person can articulate them. As dementia progresses, these details become harder to communicate but no less important to quality of life.

Resuscitation and life-prolonging treatment. Be specific about when to shift from active treatment to comfort care. "I refuse CPR and mechanical ventilation if I have advanced dementia and a concurrent life-threatening condition" is much more useful than "no heroic measures."

Transitioning into Aged Care

When a person with an ACD enters a residential aged care facility, the family or SDM should:

• Present certified copies of the ACD and any EPA to the facility's administrative team and Director of Care
• Request that the ACD be scanned into the facility's clinical records system and flagged for all care staff
• Confirm the facility knows who the SDMs are — provide contact numbers and confirm the order of preference
• Upload to My Health Record if not already done — this ensures the ACD is accessible if the person is transferred to hospital, especially in an emergency where the facility's paper records don't travel with the ambulance

The facility's protocols cannot displace a valid, applicable binding refusal. The clinical team must follow it, subject to statutory exceptions such as suspected suicide or self-harm. If there's a dispute, contact the OPA and, if necessary, SACAT.

When It's Too Late: What If Capacity Is Already Lost?

If a person with dementia has lost capacity and never executed an ACD, the family cannot create one on their behalf. Nobody — not a spouse, not an adult child, not a GP — can sign an ACD for someone who lacks capacity.

Instead, the family faces two options:

Rely on the statutory hierarchy. Under the Consent to Medical Treatment and Palliative Care Act 1995, medical decisions fall to the "Person Responsible" — first a SACAT-appointed guardian, then a prescribed relative with a close and continuing relationship, then an adult friend with such a relationship, then the person responsible for day-to-day care. SACAT may be involved as a tribunal of last resort. This hierarchy can't be customised.

Apply to SACAT for a guardianship order. If the statutory hierarchy isn't working — perhaps the prescribed relative is estranged, or family members disagree about treatment — someone can apply to SACAT for a formal guardianship order. SACAT can appoint a guardian with specific healthcare decision-making powers. This process requires medical evidence, takes time, costs money, and involves a formal tribunal process.

Neither option gives the family the control an ACD would have provided.

The "My Life My Wishes" Alternative

For people who have lost capacity, South Australia offers a non-statutory planning tool: the "My Life My Wishes" form, available through the Office of the Public Advocate. This easy-read document allows family members and carers to record what they know about the person's values, preferences, and history.

It's not legally binding. It's a communication tool that helps care teams understand the person's background and preferences when the person can no longer express them. For families who missed the ACD window, it's the next best option — but it carries none of the legal force of a properly executed directive.

Don't Wait for the "Right Time"

There's no perfect moment to have this conversation. But for families dealing with a dementia diagnosis, the right time is now — while the person can still participate in planning decisions, understand the choices being made, and execute a legally valid document.

Our South Australia Advance Directive & Living Will Kit includes a treatment decision worksheet, an SDM appointment planner, and stage-specific drafting guidance — designed so families facing a dementia diagnosis can complete their planning in a single session, while the window is still open.

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