Advance Care Directive and Dementia Victoria: Planning While You Still Can

There's a Window After Diagnosis — and It Closes

A dementia diagnosis doesn't immediately remove your ability to create legal documents. Under the Medical Treatment Planning and Decisions Act 2016, capacity is presumed for every adult in Victoria, and it's assessed on a decision-specific, time-specific basis. A person with early-stage Alzheimer's, vascular dementia, or frontotemporal dementia may still have full capacity to understand and execute an advance care directive — but that capacity will progressively erode.

The window between diagnosis and loss of capacity is the single most important planning period. Once it closes, you can no longer create an ACD, appoint a Medical Treatment Decision Maker, or execute an Enduring Power of Attorney. Your family is left navigating the statutory hierarchy or applying to VCAT for guardianship — neither of which gives you any say in your own care.

How Capacity Works With Cognitive Decline

Victorian law recognises that capacity fluctuates. A person with early-stage dementia might have clear, lucid periods where they can fully understand complex medical decisions, and other periods where they cannot. What matters is whether they had capacity at the specific moment they signed the document.

For an ACD to be valid, you must be able to:

1. Understand the information relevant to the directive and its effect.
2. Retain that information long enough to make the decision.
3. Use or weigh the information as part of the decision-making process.
4. Communicate the decision.

Notice that this standard doesn't require perfect memory or flawless reasoning. It requires sufficient understanding at the time of signing. A person with mild cognitive impairment who clearly articulates their treatment preferences, understands that an instructional directive is binding, and can explain their reasoning has capacity — even if they might not remember the conversation a week later.

Why a Formal Capacity Assessment Matters Here

For healthy adults creating an ACD, a formal capacity assessment is optional — capacity is presumed. For someone with a dementia diagnosis, it's essential.

A contemporaneous capacity assessment from your GP or treating specialist creates a dated clinical record confirming that you had capacity when you signed. This record serves two purposes:

It protects the directive from challenge. Without documented capacity at the time of signing, a family member could argue later that the directive is invalid because you "already had dementia." A formal assessment performed on the same day as signing makes that challenge extremely difficult to sustain.

It gives the witnessing GP confidence. The medical practitioner who witnesses your ACD must satisfy themselves that you understand the document and its implications. If you have a documented dementia diagnosis, the GP may be hesitant to witness without a recent cognitive assessment on file. Having that assessment ready removes the hesitation.

What to Include When Planning With Dementia in Mind

Dementia-specific advance care planning involves thinking through scenarios that are particularly relevant to cognitive decline:

Residential care transitions. When you can no longer live independently, who decides whether you enter a residential aged care facility? This is a personal decision (covered by your EPOA attorney for personal matters), but your ACD can express your values about the type of care environment you prefer.

Stage-specific treatment instructions. You might consent to hospitalisation for a treatable infection in early-stage dementia but refuse the same intervention in late-stage dementia when you no longer recognise your family. Instructional directives can be conditional on your cognitive state, but the conditions must be described in terms a clinician can assess.

Artificial nutrition and hydration. Late-stage dementia often involves difficulty swallowing. Whether to use a feeding tube or IV hydration is one of the most common decisions families face. A clear instructional directive addressing this — consent or refusal, under what conditions — removes an enormous burden from your MTDM.

Restraint and sedation. Some people with advanced dementia experience agitation that may lead to physical or chemical restraint. Your values directive can express your preferences about how agitation should be managed — an important consideration that many standard ACD forms don't prompt for.

The Urgency of Acting Early

Advance care planning conversations with people who have early-stage dementia are most productive when started soon after diagnosis, during a period of relative cognitive stability. Waiting for the "right time" or avoiding the conversation because it's confronting are understandable responses, but they risk losing the window entirely.

Practical steps:

1. Book a dedicated GP appointment within weeks of diagnosis, specifically to discuss advance care planning. Don't try to combine it with a regular check-up.
2. Complete the ACD and MTDM appointment at the same time. Both documents should be executed during the same period of confirmed capacity to minimise the risk of a validity challenge.
3. Request a formal capacity assessment on the day of signing, documented in your medical record.
4. Inform family members about the directive's existence and contents. Family challenges most often come from people who didn't know about the document or don't understand why certain decisions were made.
5. Review annually as the condition progresses. An ACD review during a lucid period refreshes the document and reinforces its validity.

When It's Too Late

If capacity has been lost and no ACD or MTDM appointment exists, the statutory hierarchy under the 2016 Act determines who makes medical decisions. For many families caring for a person with dementia, this means the spouse or oldest adult child makes treatment decisions without any documented guidance about what the person would have wanted.

VCAT guardianship is the backstop if the family disagrees or no family member is available — but that process takes weeks, involves formal hearings, and imposes ongoing fees.

Making the Most of the Window

The Victoria Advance Directive & Living Will Kit includes dementia-specific planning considerations, conditional instructional directive templates, and a capacity assessment preparation guide — everything needed to use the planning window effectively before it closes.

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