Advance care planning and decision-making

Advance care planning is about helping people express what matters to them before they lose the ability to make or communicate some decisions. In dementia, this is especially important because capacity may reduce over time, while decisions about treatment, place of care, hospital transfer, eating and drinking support, and the last phase of life become more likely.

What good advance care planning may cover

• The person's wishes and priorities: what matters most to them, what good care looks like, and what they fear or want to avoid.
• Who should be involved: family members, attorneys, advocates, and professionals the person wants included.
• Preferred place of care: for example remaining in the care home if possible.
• Emergency or future treatment preferences: including broader plans, not only one specific form or decision.
• Cultural, spiritual, and religious wishes: these may become especially important near the end of life.

Key legal point

Across the UK, decisions for adults who may lack capacity must be lawful, decision-specific, person-centred, and properly recorded. In England and Wales, the Mental Capacity Act 2005 applies. NICE says advance care planning should be offered to people at risk of losing capacity and should be discussed sensitively, documented clearly, shared with consent, and reviewed over time.

If the person later lacks capacity for a decision, staff must still use the relevant legal decision-making process and involve lawful representatives properly. Family do not automatically make decisions just because they are relatives. Scotland and Northern Ireland use different legal frameworks, so staff should follow local law and policy.

Capacity and incapacity law across the UK

DNACPR and local emergency care plans

A useful planning reminder

Advance care planning in dementia should start before crisis. It is voluntary, person-led, and most useful when it is clearly recorded, shared, and reviewed as the condition changes.