Advance Directive for Dementia in Northern Ireland

Dementia creates a closing window. In the early stages, you still have the mental capacity to make decisions about your future care. In the later stages, you don't — and at that point, decisions transfer to clinical teams applying a "best interests" assessment that your family can influence but not control.

In Northern Ireland, where there's no Health and Welfare Power of Attorney to appoint a healthcare proxy, this window matters even more. An Advance Decision to Refuse Treatment drafted while you still have capacity is the only legally binding mechanism for recording your treatment refusals once dementia takes that capacity away.

The Timing Problem

Dementia is progressive, and capacity is decision-specific. A person with early-stage Alzheimer's may still have the capacity to understand and execute an ADRT — they can comprehend what treatments they're refusing, why they're refusing them, and what the consequences of refusal will be. As the condition advances, that capacity narrows and eventually disappears.

The practical implication: an ADRT drafted after a dementia diagnosis is valid as long as the person had capacity at the time of signing. But the further the condition has progressed, the more likely it is that someone — a family member, a clinician, a court — will challenge whether capacity truly existed when the document was executed.

This means the best time to create an ADRT is either before any cognitive symptoms appear, or as soon after an early diagnosis as possible. Don't wait for symptoms to worsen while you "think about it."

What to Refuse (and How to Frame It)

Dementia-specific ADRTs need to address treatments that arise in the middle and late stages of the condition, when the person can no longer communicate their preferences:

Clinically assisted nutrition and hydration. In late-stage dementia, when a person loses the ability to swallow safely, the clinical question becomes whether to insert a feeding tube (nasogastric or PEG). If you would refuse tube feeding in this situation, your ADRT needs to say so explicitly — including the life-at-risk clause, because withholding nutrition and hydration can be a life-sustaining treatment decision.

Antibiotics for life-threatening infection. Pneumonia is one of the most common causes of death in late-stage dementia. Some people want infections treated aggressively regardless; others would prefer comfort-focused care without antibiotics. Your ADRT should state your preference clearly.

Cardiopulmonary resuscitation. CPR on a person with advanced dementia has extremely poor outcomes and carries significant risks of injury. If you'd refuse CPR in the context of advanced dementia, specify this.

Hospital admission and transfer. While an ADRT can't technically refuse hospital admission (that's a placement decision, not a treatment), you can express a strong preference to remain in your care home or at home, with treatment refusals that make hospital transfer less likely.

The Circumstances Clause

This is where dementia ADRTs require particular care. "If I have dementia" is too vague — dementia spans years and covers a vast range of functional states. Clinicians need to know at what stage your refusals kick in.

Effective approaches include:

"If I am in the advanced stage of a dementia diagnosis (including Alzheimer's disease, vascular dementia, or Lewy body dementia) where I am unable to recognise close family members, unable to communicate meaningfully, and unable to perform basic activities of daily living without full assistance."

"If I have a progressive cognitive condition and have been assessed by the treating clinical team as having permanently lost the capacity to make decisions about my medical treatment, with no realistic prospect of recovery."

The more specific your description of the stage at which your refusals apply, the less room there is for disagreement between your family and the clinical team about whether that stage has been reached.

The Capacity Assessment Risk

If your ADRT is created after a dementia diagnosis, expect its validity to face scrutiny. Clinical teams may argue that you lacked the capacity to understand the consequences of your refusals at the time of signing.

To protect against this challenge:

• Have your capacity formally assessed at the time of signing. Ask your GP or a specialist to conduct and document a capacity assessment on the day you execute the ADRT.
• Include a GP or clinician in the signing process. While a clinician shouldn't witness the document, having your GP present during the discussion and able to confirm in their records that you demonstrated capacity is powerful evidence.
• Record a video statement. Film yourself reading through the ADRT, explaining your decisions, and demonstrating that you understand what you're refusing and why. This isn't legally required, but it provides compelling evidence of capacity that's difficult to challenge.
• Sign the document early. The earlier in the diagnosis timeline, the stronger the capacity argument.

What an ADRT Cannot Cover

An ADRT addresses treatment refusals, not care preferences. It can refuse tube feeding but can't specify that you want to be kept at home rather than moved to a care facility. It can refuse CPR but can't request a particular level of pain management.

For the preferences that fall outside an ADRT's legal scope, draft a separate advance statement. This document records your values, preferences, and wishes about care, living arrangements, and daily routines. It's not legally binding, but clinical teams are required to consider it when making best-interests decisions. Together, the ADRT and advance statement cover the full range of decisions that arise as dementia progresses.

Our Northern Ireland Advance Decision to Refuse Treatment guide includes dementia-specific drafting templates, a capacity assessment checklist, and a GP consultation worksheet that helps you create a document built to withstand the scrutiny that post-diagnosis ADRTs inevitably face.

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