Advance Directive Dementia UK

Why Dementia Makes ADRTs Both Urgent and Complicated

A dementia diagnosis compresses the planning window. The Mental Capacity Act 2005 requires that you have decision-specific mental capacity when you make an Advance Decision to Refuse Treatment. Once your capacity to understand, retain, and weigh treatment decisions is lost, you can no longer create or amend an ADRT.

For progressive conditions — Alzheimer's disease, vascular dementia, frontotemporal dementia, Lewy body dementia — the window of capacity narrows over months or years, not overnight. But the direction is one way. The practical advice from every major UK charity and clinical body is the same: make your ADRT as early as possible after diagnosis, while your capacity is clear and documented.

The Fluctuating Capacity Problem

Dementia does not remove capacity in a clean, permanent switch. Capacity fluctuates — particularly in early and moderate stages. Under Section 1(2) of the Mental Capacity Act, a person must be presumed to have capacity unless proven otherwise. During a lucid interval, you retain the legal right to override your own ADRT by making a contemporaneous decision.

This creates a clinical grey zone. If you have moderate dementia and refuse treatment during what appears to be a lucid moment, clinicians must assess whether you genuinely have decision-specific capacity at that moment. If you do, your real-time refusal stands. If you do not, the clinical team reverts to the ADRT (if valid and applicable) or a best-interests assessment.

The challenge for families: how do you protect the wishes your relative expressed while clearly capacitous, against decisions made during periods of confusion? The answer is a well-drafted ADRT with a supporting capacity assessment.

Using Clinical Staging Scales

The single most effective thing you can do when writing a dementia-specific ADRT is to anchor your refusal triggers to recognised clinical staging tools rather than subjective descriptions.

Instead of: "If I have severe dementia and do not recognise my family."

Use: "If I have late-stage, irreversible dementia, assessed against clear, stated functional criteria."

This approach gives the clinical team a clear, documented threshold. It removes the subjective judgement about what "severe" means and replaces it with stated functional criteria.

Timing the ADRT After Diagnosis

If you have received a dementia diagnosis and want to make an ADRT:

Act as early as possible after diagnosis. The Alzheimer's Society and Dementia UK both advise completing advance care planning within the first few months of diagnosis. Capacity assessments conducted early in the disease course are far more robust than those conducted later.

Get a formal capacity assessment. Ask your GP or consultant to conduct a capacity assessment specifically for the purpose of making the ADRT. A written record confirming you had capacity on the date you signed the document is the strongest defence against a future challenge.

Involve a medical professional as witness. While the witness must be present when you sign and must also sign the document, having a GP, consultant, or specialist nurse as your witness does not itself prove capacity; ask them to record any separate capacity assessment at the time of signing.

Review the ADRT at each clinic appointment. If your condition allows, confirm at each follow-up that the ADRT still reflects your wishes. Note the review date on the document. This series of dated confirmations makes it progressively harder to argue the document was made without proper understanding.

Updating After a Diagnosis Changes

If you made an ADRT before your dementia diagnosis and want to update it afterwards, draft an entirely new document rather than amending the old one. Sign, witness, and date the new ADRT. Then destroy the original and recall all distributed copies.

This prevents any ambiguity about which version applies and ensures the most recent document was made with documented capacity in the context of your current diagnosis.

The England ADRT Guide includes a complete dementia-specific ADRT drafting worksheet with clinical staging triggers, a capacity assessment preparation checklist, and worked examples of treatment refusal clauses for late-stage cognitive decline — designed to ensure your wishes hold up clinically even as your capacity to advocate for yourself fades.

See more England guides →