Advance Directive and Dementia in the Northern Territory

The Capacity Window

Dementia planning in the Northern Territory revolves around one fact: you can only create or update an Advance Personal Plan while you have decision-making capacity. Once capacity is gone, the document is locked. No one else can create one for you. The APP you have — or do not have — at the point of incapacity is what governs your care.

Under NT law, an adult is presumed to have capacity unless clinical evidence demonstrates an inability to understand, retain, weigh, or communicate the decisions at hand. A dementia diagnosis does not automatically remove that presumption. Early-stage Alzheimer's, mild cognitive impairment, or vascular dementia with preserved insight do not by themselves determine capacity; a person may still be able to make a legally valid APP if they retain capacity for the decisions involved.

The window closes at different speeds depending on the type and progression of the dementia. Some people retain capacity for years after diagnosis. Others lose it rapidly. There is no formula — it is assessed for each decision at each point in time.

What to Document

A dementia-specific APP should be more detailed than a standard plan because the person is documenting wishes for a future they can now see with some specificity. Key areas to address:

Progressive care settings. Do you want to remain at home as long as possible, even if it means less intensive medical supervision? At what point would you accept residential aged care? Do you have preferences about specific facilities?

Treatment escalation. As dementia progresses, acute medical events (pneumonia, urinary tract infections, falls) require treatment decisions. Do you want full hospital treatment, or comfort care at the aged care facility? This is where Advance Consent Decisions — specific, binding refusals or consents — carry the most weight.

Artificial nutrition and hydration. Late-stage dementia often involves difficulty swallowing. A clear Advance Consent Decision on whether you consent to PEG tube feeding or IV hydration removes one of the most distressing decisions your family will face.

Resuscitation. Recording a specific refusal of CPR for circumstances involving advanced dementia with no realistic prospect of recovery is one of the most impactful decisions you can make.

Behavioural management. Dementia can involve agitation, aggression, and wandering. Recording your views on chemical restraint (sedative medication) and physical restraint gives clinicians and aged care staff guidance that respects your dignity.

Getting a Capacity Assessment

If there is any possibility that the person's capacity will be challenged — by a family member, by an aged care facility, or by a bank when the financial decision-maker tries to act — get a formal capacity assessment at the time of signing.

The assessment should be conducted by the person's GP or a specialist (geriatrician, neuropsychologist) and documented in writing. It should specifically state that the person had capacity to understand, retain, and weigh the decisions in the APP at the time of execution. Keep this assessment with the original APP.

Under NT law, there is no required form for a capacity assessment, but NTCAT Forms AG3 and HCDM2 provide a recognised framework if the assessment is likely to be scrutinised.

The Family Conflict Factor

Dementia planning is where family disputes most commonly arise. Adult children may disagree about the level of care their parent should receive. A de facto partner may have different views than biological children. Someone may challenge the APP on the grounds that the maker was "already losing it" when they signed.

A contemporaneous capacity assessment is the strongest defence against these challenges. Proper witnessing by an authorised professional (not just any adult) adds another layer of protection. And the more specific the Advance Consent Decisions, the less room there is for reinterpretation by family members who disagree with the maker's choices.

What Happens Without a Plan

If someone with dementia loses capacity without an APP, an NTCAT-appointed guardian with healthcare authority comes first if one exists. Otherwise, the statutory hierarchy under the Health Care Decision Making Act 2023 considers a relative recognised under Aboriginal or other customary law or tradition, then a spouse or de facto partner, a non-commercial carer, adult children, parents, siblings, or close friends — each with a close and continuing relationship — and finally the Public Guardian.

Without an APP, there is no binding guidance on treatment preferences. The decision-maker makes choices based on what they believe the person would have wanted, guided by the principle that decisions should promote the person's well-being while being the least restrictive of their freedom.

For financial decisions without an APP, the family must apply to NTCAT for a financial management order — adding tribunal proceedings to an already stressful situation.

Acting Before the Window Closes

The practical advice for anyone with a new dementia diagnosis or a parent showing cognitive decline: do not wait. Execute the APP now, while capacity is clear and documentable. Include specific Advance Consent Decisions for the clinical scenarios that dementia makes likely. Get a capacity assessment at the time of signing.

Our Northern Territory Advance Directive & Living Will Kit includes a decision-maker worksheet, a capacity documentation guide, and clinical translation tools that help turn your preferences into the specific language that hospital and aged care staff can act on.

See more Northern Territory guides →