Advance Care Planning After a Dementia Diagnosis in NSW
A dementia diagnosis does not immediately strip someone of their legal capacity. In the early stages — and often well into the moderate stage — a person can still understand, retain, and communicate decisions about their future medical care. That window is the planning window, and it closes without warning.
In New South Wales, the legal framework for advance care planning relies on the person having decision-making capacity at the time they create their documents. Once capacity is lost, no Advance Care Directive can be made, no Enduring Guardian can be appointed, and no Power of Attorney can be signed. Whatever documents exist at that point — complete or incomplete — are what the family, the aged care facility, and the hospital will work with.
Why Dementia Makes NSW Planning Especially Urgent
NSW's common-law Advance Care Directive system places a higher burden on the person creating the directive than most other Australian states. There is no statutory form to fill in. The directive must be clear, specific, and unambiguous — and it must demonstrably reflect the person's wishes while they had capacity. For someone with a progressive cognitive condition, this creates a moving target.
A directive written during early-stage Alzheimer's that contains precise treatment preferences, a dated capacity assessment from a GP, and a witness signature is strong. A directive scribbled on a notepad eighteen months later, when the person's MMSE scores have dropped significantly, is vulnerable to challenge — by family members, by clinicians, or by NCAT if a dispute arises.
The practical implication: act within weeks of diagnosis, not months.
What to Include in a Dementia-Specific Directive
Standard advance care planning templates tend to focus on acute scenarios — cardiac arrest, intensive care admission, mechanical ventilation. Dementia planning needs to address a slower, progressive trajectory:
Cognitive decline thresholds — at what stage of cognitive impairment should treatment goals shift from curative to comfort-focused? Some people want active treatment for all concurrent illnesses regardless of their dementia stage. Others want comfort care once they can no longer recognise family members or communicate meaningfully.
Infection management — recurrent pneumonia and urinary tract infections are the most common medical events in advanced dementia. Repeated antibiotic courses can extend life but often at the cost of hospital transfers, IV lines, and physical distress. Your directive should state whether you want antibiotics for these infections at each stage of your disease.
Artificial nutrition and hydration — difficulty swallowing is a hallmark of advanced dementia. A PEG tube can sustain nutrition but does not improve quality of life or survival in late-stage dementia (multiple studies confirm this). Your directive should address whether you consent to tube feeding.
Hospitalisation preferences — whether you want to be transferred to hospital for acute events, or managed in your residential facility with palliative support. Many people with advanced dementia find hospital environments profoundly disorienting, and transfers can accelerate cognitive decline.
Restraint and sedation — if you develop behavioural symptoms (agitation, wandering, aggression) that are common in certain dementia subtypes, do you consent to chemical restraint? Physical restraint? This is a deeply personal decision and one that your Enduring Guardian will face if it's not addressed in your directive.
Appointing an Enduring Guardian for Dementia
An Enduring Guardian makes healthcare, accommodation, and lifestyle decisions when you can no longer make them yourself. For someone with dementia, this appointment is arguably more important than the Advance Care Directive, because a directive cannot anticipate every clinical scenario — but a guardian who understands your values can adapt to situations your written instructions didn't cover.
Choose someone who:
- Has had direct conversations with you about your preferences for care during cognitive decline
- Will advocate for comfort care if that's what you've expressed, even when other family members push for aggressive treatment
- Can attend care conferences at your aged care facility and communicate effectively with nursing staff
- Lives close enough to be reached by phone when urgent decisions arise
If your first-choice guardian develops their own health problems or becomes unavailable, your appointment lapses. Name a substitute guardian in the statutory form to prevent this gap.
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Updating and Revoking Existing Documents
If you already have an Advance Care Directive and Enduring Guardian appointment from before your diagnosis, a dementia diagnosis is a strong trigger to review them. Your treatment preferences may have changed now that you know your likely clinical trajectory.
To update your Advance Care Directive, simply create a new one. Under NSW common law, a later directive overrides an earlier one provided you had capacity when you created it. Date it clearly and have your GP document a capacity assessment on the same day.
To revoke your Enduring Guardian, complete Form 2 (Revocation of Appointment of Enduring Guardian) under the Guardianship Act 1987. The revocation must be witnessed by a prescribed witness — the same category of professionals who witnessed the original appointment. Critically, the revocation is legally ineffective until you deliver written notice to the former guardian. Retrieve and destroy all copies of the old appointment to prevent confusion.
To change your Enduring Guardian, revoke the existing appointment first, then execute a new one. You cannot simply cross out the old guardian's name and write in a new one — the statutory form must be re-executed from scratch with proper witnessing.
The Capacity Assessment Safety Net
For any planning document created after a dementia diagnosis, a contemporaneous medical capacity assessment is essential. This is not a legal requirement — NSW common law does not mandate a capacity assessment for an Advance Care Directive — but it is the single most effective defence against a future challenge.
Ask your GP or geriatrician to conduct a formal capacity assessment, document it in your medical records, and provide a written statement confirming that you had decision-making capacity on the date you signed your directive and Enduring Guardian appointment. If your capacity is later questioned by a family member, a hospital ethics team, or NCAT, this assessment provides strong evidence that the documents are valid.
The NSW Advance Directive & Living Will Kit includes dementia-specific treatment clauses, a capacity assessment coordination checklist, and step-by-step revocation instructions so your planning documents stay current as your condition progresses.
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