Dementia and Advance Directive Planning in PEI

The Closing Window

A dementia or Alzheimer's diagnosis is a ticking clock for advance care planning. The disease progressively removes the mental capacity required to create legally binding documents, and once that capacity is gone, the window closes permanently. There's no mechanism in PEI law to create a Health Care Directive on behalf of someone who's already lost capacity.

This isn't an abstract legal concern. PEI's population skews older — the province has one of the highest proportions of seniors in Canada — and dementia is the leading driver of long-term care admissions across the Island. For the adult children managing a parent's care, the question is rarely whether advance care planning is needed. It's whether it's still possible.

The answer depends on timing and on what "capacity" actually means under PEI law.

Capacity Is Decision-Specific

Under the Consent to Treatment and Health Care Directives Act, mental capacity is not an all-or-nothing status. A person with early or moderate dementia may lack capacity to manage their finances but retain capacity to make medical decisions. They may be unable to drive safely but still understand what a Health Care Directive means and what appointing a proxy involves.

The legal test for creating a Health Care Directive is whether the person understands the nature and effect of the document — that they're specifying which medical treatments they accept or refuse, and that they're giving someone else authority to make decisions if they can't. If they understand those concepts at the time they sign the directive, the directive is valid, even if their capacity fluctuates or declines later.

This means families with a parent in the early stages of dementia often have more time than they think — but the window doesn't stay open. By the time a parent doesn't recognize their children or can't follow a conversation about their medical wishes, the opportunity to create a directive has passed.

What to Address in the Directive

A Health Care Directive for someone with a dementia diagnosis should address the specific medical decisions that dementia patients and their families most commonly face.

Goals of Care Designation. PEI's clinical system uses three treatment levels: Designation R (full resuscitation and all interventions), Designation M (active medical treatment without CPR or mechanical ventilation), and Designation C (comfort care only). For many dementia patients, the designation changes over the course of the disease. Someone in early-stage dementia might choose Designation M — treat infections and injuries actively but don't resuscitate. In advanced dementia, they might prefer Designation C — comfort measures only. The directive can include conditional instructions: "Designation M while I can still communicate with my family; Designation C if I can no longer recognize my immediate family members."

Artificial nutrition and hydration. As dementia progresses, many patients lose the ability to swallow safely. The question of whether to insert a feeding tube is one of the most agonizing decisions families face. Evidence consistently shows that feeding tubes in advanced dementia do not extend life or improve comfort, but families who haven't discussed this in advance often default to the tube because refusing it feels like "starving" their parent. Addressing this explicitly in the directive — "I do not consent to a feeding tube if I have advanced dementia and can no longer swallow safely" — removes the burden of that decision from the family.

Hospitalization and transfer. Should the person be transferred from their nursing home to the hospital for acute illness? For someone with advanced dementia, a hospital transfer can be disorienting and distressing, often worsening confusion and agitation. The directive can specify circumstances under which a hospital transfer is acceptable (broken bone requiring surgical repair) versus when comfort care at the facility is preferred (pneumonia in late-stage dementia).

Antibiotics in late-stage illness. Pneumonia is sometimes called "the old man's friend" because it can provide a relatively peaceful death for someone with advanced dementia. Deciding in advance whether to treat pneumonia with antibiotics — or to provide comfort care and allow the infection to take its course — is a decision best made while the person can still express their values.

Participation in research. Some people with early dementia want to contribute to research that might help future patients. The directive can include or exclude consent to participate in clinical trials or observational studies.

The Proxy Decision

Choosing a proxy is always important, but for dementia patients it carries extra weight because the proxy will be making decisions over a much longer period — potentially years — rather than during a single medical crisis.

The proxy for a dementia patient needs several specific qualities:

• Willingness to follow the directive's instructions even when it's emotionally difficult. The hardest moment is usually refusing treatment that might extend life by weeks or months when the person's quality of life has deteriorated severely. A proxy who can't follow through on a comfort-care directive when the moment comes undermines the entire purpose of the document.
• Availability. Dementia care involves ongoing decisions, not a single crisis point. The proxy needs to be reachable for consultations with the care team over months or years.
• Understanding of the disease trajectory. A proxy who understands that dementia is progressive and terminal — that there is no recovery phase — will make decisions more aligned with the person's stated wishes than someone who holds out hope for improvement that won't come.

Remember PEI's mandatory acceptance requirement: the proxy must sign the Health Care Directive. If you're helping a parent with early dementia create a directive, make sure the proxy signs before the document is filed. An unsigned acceptance line makes the entire appointment invalid.

Coordinating with the Personal Directive

Because PEI separates medical decisions from personal care decisions under two different statutes, a dementia diagnosis makes both documents essential.

The Health Care Directive covers medical treatment. The Personal Directive covers where the person lives, their daily nutrition, clothing, social activities, and hygiene. For a dementia patient, the Personal Directive governs decisions like:

• When to move from independent living to assisted living to long-term care
• Whether to hire private care aides versus relying on Health PEI home care
• Daily routine preferences — meal times, activities, outings
• Contact with family and friends

These decisions profoundly affect quality of life, and they're separate from the medical decisions covered by the Health Care Directive. Creating both documents while the person still has capacity ensures that a single person (or coordinated pair of people) can manage the full scope of care decisions.

When Capacity Is Uncertain

If there's any question about whether a parent still has the capacity to create a Health Care Directive, the safest approach is to have their family doctor assess capacity before the directive is signed. The assessment doesn't have to be a formal Form A finding — it can be a clinical note in the medical record confirming that the doctor discussed the directive with the patient, that the patient understood the nature and effect of the document, and that the doctor believes the patient had capacity at the time of signing.

This clinical record protects the directive from being challenged later. If an unhappy family member tries to argue that the parent lacked capacity when they signed, the doctor's contemporaneous assessment provides strong evidence that the directive is valid.

Don't wait for the "right moment" to have this conversation. Capacity fluctuates in dementia — a parent may have a clear day followed by a confused week. Act on the clear days.

The PEI Advance Directive & Living Will Kit includes a Goals of Care translation worksheet that helps dementia patients and their families map treatment preferences to PEI's clinical R/M/C framework while the person can still participate in the conversation.

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