Advance Directive for Dementia and Progressive Illness in Scotland

The Window for Action Is Smaller Than You Think

A progressive illness diagnosis — dementia, Alzheimer's, Parkinson's, motor neurone disease, or advanced cancer — fundamentally changes the timeline for advance care planning. Once you no longer have capacity for the relevant decisions, you can no longer create or update a legally valid advance directive in Scotland. The document must be drafted and signed while you still have the ability to understand what you are refusing and why.

The practical window between diagnosis and loss of capacity varies from person to person and can narrow as a condition progresses. Waiting "until things get worse" is the most common mistake — by then, the legal opportunity has closed.

Why Progressive Illness Demands Specific Wording

A generic advance directive that refuses treatment "if I am terminally ill" may not cover the clinical realities of progressive neurological conditions. Dementia, for example, is not always classified as terminal until its very final stages, even though the trajectory is clear from early on.

A directive written after a progressive diagnosis should address these specific scenarios:

For dementia and Alzheimer's:

• Refusal of clinically assisted nutrition and hydration if you can no longer feed yourself and do not recognise close family members
• Refusal of antibiotics for pneumonia or urinary tract infections when the infection represents a natural endpoint
• Refusal of hospitalisation for acute illness when your condition has progressed beyond meaningful recovery
• Instructions on whether you wish to remain in a care home or be transferred to hospital for acute episodes

For Parkinson's disease:

• Refusal of mechanical ventilation if respiratory function deteriorates
• Refusal of PEG feeding tube insertion if swallowing difficulties become permanent
• Specific instructions about whether you want deep brain stimulation or other surgical interventions discussed with your welfare attorney

For motor neurone disease (MND):

• Refusal of tracheostomy ventilation when non-invasive ventilation is no longer effective
• Refusal of PEG feeding if you choose not to prolong the disease trajectory
• Clear instructions about the stage at which life-sustaining treatment should cease

For advanced cancer:

• Refusal of further chemotherapy or radiotherapy after a defined point (e.g., after second-line treatment has failed)
• Refusal of CPR and mechanical ventilation in the event of cardiac or respiratory arrest
• Preference for palliative care over curative intervention once the disease is classified as incurable

The Capacity Question After Diagnosis

One of the most common concerns after a dementia diagnosis is whether the person still has the legal capacity to create an advance directive. In Scotland, capacity is assessed functionally — you need to demonstrate that you understand the specific decisions you are making, not pass a generalised cognitive test.

A person with early-stage Alzheimer's who can explain what treatments they are refusing and why retains capacity for that specific decision, even if their memory is affected in other areas. Having your GP or a hospital consultant confirm your capacity at the time of signing — ideally by co-signing or witnessing the document — provides strong evidence against future challenge.

If capacity is in question, obtain a capacity assessment by a qualified medical practitioner at the time of signing. This provides contemporaneous medical evidence that you were capable when the document was executed.

Updating an Existing Directive After Diagnosis

If you already have an advance directive and receive a progressive illness diagnosis, review and update the document immediately. The original directive may not cover the specific clinical scenarios that your diagnosis introduces.

The update process is straightforward:

1. Draft a new version that includes condition-specific treatment refusals
2. Include a statement revoking the previous version ("This directive supersedes and replaces all previous advance directives I have made")
3. Sign and witness the new version
4. Deliver copies to your GP, welfare attorney, and specialist consultant
5. Ask your GP to update the NHS Key Information Summary (KIS) entry

The KIS update is critical — emergency services check the digital record, not the paper copy in your file. If the KIS still reflects an older, less specific version of your directive, that is what clinicians will act on.

Pair the Directive with a Welfare POA While You Can

For anyone with a progressive illness, a welfare power of attorney is essential alongside the advance directive. The directive covers treatment refusals; the welfare attorney handles everything the directive does not — consenting to treatment changes, making care home decisions, managing day-to-day welfare choices as the illness progresses.

The OPG Scotland registration backlog (currently around 46 business days for electronic submissions) makes early action critical. If capacity is declining, apply for expedited registration — the OPG offers fast-track processing on cause shown, supported by medical evidence that delay could leave the person without decision-making cover.

The Scotland Advance Directive Planning Kit includes condition-specific drafting templates for dementia, Parkinson's, MND, and cancer, along with the GP and consultant notification letters that ensure updated preferences reach the KIS database.

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