Advance Care Planning in Dementia: Turning Preferences into Day-to-Day Practice

January 23, 2026

Advance care planning (ACP) is often described as a “conversation”, but dementia services are judged on whether those conversations translate into consistent, compassionate practice when capacity fluctuates and risks rise. Good ACP is not a document filed away; it is a living plan that shapes daily decisions, reduces avoidable distress, and gives families and professionals confidence that care remains person-led. This guidance sits within End of life care and advance care planning and aligns with the operational expectations embedded in dementia service models used by commissioners to assess whether end-of-life care is planned, coordinated and properly governed.

What advance care planning needs to achieve in dementia services

In dementia, timing and clarity matter. ACP should aim to:

Capture what matters most to the person (values, routines, relationships, comfort priorities).
Anticipate foreseeable decisions (hospital transfers, infection treatment, nutrition and hydration, resuscitation discussions, place of care).
Create a shared operational reference for staff across shifts and for visiting clinicians.
Reduce crisis decision-making that can lead to distress, conflict, or unwanted escalation.

The best ACP is practical: it describes how the person wants to be supported in real situations, and it sets out who should be involved in decisions if they cannot decide at the time.

Making ACP usable: what to record (and how to structure it)

Services often over-record clinical detail and under-record the person’s lived preferences. A usable ACP structure typically includes:

Person’s priorities: comfort vs intervention, privacy, preferred routines, key relationships, spiritual or cultural needs.
Communication and distress cues: how the person shows pain, anxiety, fear, hunger, discomfort or fatigue.
Clinical escalation preferences: what to try first in the service, when to involve GP/out-of-hours, and when hospital transfer is or is not desired (recognising each situation still needs a decision at the time).
Decision-making arrangements: who should be consulted, what information should be shared, and how to manage disagreement.
Review points: triggers for review (new diagnosis, repeated infections, falls, weight loss, loss of mobility, bereavement, hospital discharge).

Use plain language. Avoid vague phrases like “no hospital” without context. The plan should show how comfort will be delivered and what alternatives exist to hospital admission.

How ACP interacts with capacity and best-interests decisions

ACP does not remove the need for capacity assessment and best-interests decision-making for specific choices. Instead, it strengthens it by evidencing the person’s wishes, feelings, values and previously expressed preferences. Operationally, staff need two disciplines:

Capacity is decision-specific: a person may be able to choose what to eat but not weigh risks of hospital treatment during delirium.
ACP is evidence: it informs best-interests decisions and reduces the risk of decisions being driven by fear, habit, or conflict.

When ACP is strong, the record shows a clear line from the person’s values to the decision taken, and a clear review plan if circumstances change.

Operational Example 1: Managing repeated chest infections without default hospital transfer

Context: A person with moderate-to-advanced dementia has repeated chest infections and becomes extremely distressed in hospital settings. Family members disagree: one wants hospital “every time”, another says the person would want comfort and familiar surroundings.

Support approach: The service convenes a structured review using the ACP as the starting point, capturing what the person previously expressed about hospital, fear, dignity and comfort. The team agrees an escalation pathway: early GP contact, in-service observations, and clear criteria for when hospital is clinically necessary versus when treatment can be delivered in the service with community support.

Day-to-day delivery detail: Staff use a consistent observation routine during early signs of infection (temperature, respiratory rate if trained, hydration prompts, comfort measures). The care plan includes distress-reduction steps (quiet room, familiar staff, preferred music, reassurance phrases). Family communication is standardised: what staff are monitoring, what has changed, and what actions are being taken. The service documents each episode against the agreed pathway, including the rationale when hospital is avoided or used.

How effectiveness or change is evidenced: Evidence includes reduced avoidable transfers, earlier clinical involvement, fewer distress episodes linked to escalation, and clearer records that show consistent application of the person’s preferences and clinical judgement.

Operational Example 2: Eating and drinking changes near end of life

Context: A person begins eating less and coughing when drinking. Family members fear “starving” and request hospital assessment and artificial feeding. Staff worry about aspiration risk and distress caused by repeated attempts to feed.

Support approach: The ACP and prior preferences are reviewed, focusing on comfort, dignity and the person’s relationship with food. The plan clarifies that the goal is comfort-focused support and risk-managed intake, with clinical advice sought to ensure safe techniques and realistic expectations. The service agrees how to communicate changes and how to review regularly.

Day-to-day delivery detail: Staff implement a “comfort feeding” approach: small amounts, preferred foods, upright positioning, slow pacing, and stopping when distress or fatigue increases. Fluids are offered in the safest, most acceptable way for the person. Staff record what was accepted and how the person responded, rather than simply “refused”. The service uses short, frequent updates to family focusing on comfort indicators (dry mouth care, pain cues, calmness, sleep) and explains how the approach aligns with the person’s priorities.

How effectiveness or change is evidenced: Evidence includes reduced distress at mealtimes, improved comfort indicators, better consistency across shifts, and records showing thoughtful risk management rather than coercion or avoidance.

Operational Example 3: Planning preferred place of care during a rapid decline

Context: A person deteriorates rapidly after a fall. Clinicians raise concerns about end-of-life phase. The family requests a “trial in hospital” despite the person previously being distressed by hospital environments.

Support approach: The service uses ACP to clarify the person’s priorities (familiar surroundings, family presence, comfort, minimal transfers) and convenes a best-interests discussion for the immediate decision. The team explores alternatives to hospital: urgent GP review, symptom control planning, and coordinated family support in the service.

Day-to-day delivery detail: Staff set up a comfort plan: a calm environment, flexible visiting, a named lead each shift, and consistent updates. Records capture pain and distress cues, repositioning, mouth care, and how the person’s comfort is assessed. The service documents the rationale for decisions about transfer or non-transfer and sets a review point if symptoms cannot be managed safely. The family is supported with practical guidance on what changes to expect and how the service will respond.

How effectiveness or change is evidenced: Evidence includes fewer unnecessary transfers, improved family confidence, clearer symptom management documentation, and consistent staff practice aligned to the plan.

Expectations to evidence

Commissioner expectation

Commissioners expect ACP to be embedded and auditable: clear coverage across eligible people, timely reviews triggered by health changes, evidence that plans inform escalation decisions, and governance that reduces unwarranted variation between shifts or units.

Regulator / Inspector expectation (CQC)

CQC will look for personalised end-of-life planning and coordinated delivery: the person’s wishes evidenced, families involved appropriately, staff confident in applying plans, and records showing timely responses to deterioration, comfort-focused care, and learning from incidents or complaints.

Governance: keeping ACP real, current and consistent

Services that do ACP well use light but disciplined controls:

ACP register: who has an ACP, when it was last reviewed, and the next review trigger.
Monthly sampling audit: check that plans include practical preferences, escalation guidance and evidence of use during recent events.
Handover prompts: where ACP is stored, key priorities, and any current review triggers.
Family communication standard: consistent update format during deterioration to reduce conflict and confusion.

The outcome is a plan that staff can use at 3am, families can recognise as faithful to the person, and commissioners and inspectors can see as operational, not aspirational.