End of Life Care and Advance Care Planning in Dementia: Making the Pathway Safe, Joined-Up and Audit-Ready

End of life care in dementia is rarely a single “end stage” event. It is a gradual shift in goals: from maintaining function to maximising comfort, dignity and safety, often while capacity changes and health crises occur. In England, dementia end of life pathways are frequently disrupted by late planning, inconsistent escalation decisions, and uncertainty about roles across primary care, community nursing and urgent care. Providers are therefore judged on whether they can operationalise advance care planning, communicate consistently with families, and evidence decision-making that is person-centred, lawful and coordinated. For the broader pathway context, see dementia service models and dementia service models and pathways.

Why end of life care in dementia needs a pathway, not ad-hoc decisions

Dementia creates predictable end of life challenges: swallowing changes, recurrent infections, frailty and falls, distress, reduced mobility, and increased carer strain. Without a clear pathway, decisions get made in crisis, often leading to avoidable hospital admissions, inconsistent symptom control, and conflict with families about what “should happen”.

Operationally, good end of life dementia care means:

• Planning early enough to be meaningful, not just when someone is dying
• Clear escalation decisions, recorded and shared with relevant services
• Day-to-day comfort and symptom support embedded in routines
• Family partnership that reduces conflict and improves consistency
• Governance that evidences decision quality, not just outcomes

Advance care planning: what “good” looks like in practice

Advance care planning in dementia is not a single document. It is a structured set of conversations, decisions and records that evolve as needs change. Providers should be able to evidence:

• When and how planning conversations start (trigger points and responsibility)
• How the person is supported to express preferences (communication and accessibility)
• How capacity is considered where decisions are complex
• How information is shared with family and professionals, with consent and rationale
• How plans are reviewed and updated after health changes or crises

Commissioners and inspectors often test whether staff can explain the plan and apply it consistently during deterioration, not just whether a plan exists.

Operational example 1: early planning preventing crisis-driven admissions

Context: A person with dementia living at home experiences repeated UTIs and delirium episodes. Family routinely call 999 during deterioration, leading to admissions and distress.

Support approach: The provider initiates proactive planning with primary care and family, focusing on clear escalation thresholds and comfort measures.

Day-to-day delivery detail: Staff record early warning signs (hydration changes, confusion spikes, reduced intake) and share structured information with GP/community nursing. A planning meeting is held with the person (where possible) and family to agree preferences, including what to do during deterioration, who to call first, and what would justify hospital transfer. Staff are trained to use a consistent escalation script and to document observations in a way that supports clinical decision-making. The support plan includes hydration prompts, infection prevention routines, and calming approaches during delirium. The plan is reviewed after each episode.

How effectiveness or change is evidenced: Admissions reduce over the following months, with earlier GP/community responses. Records show consistent escalation and clear rationale when hospital transfer is or is not pursued.

Comfort-focused care: making it real in daily routines

Dementia end of life care is often delivered by frontline staff, meaning comfort must be operationalised through routines, not specialist terminology. This includes:

• Recognising pain and discomfort when communication is reduced
• Supporting eating and drinking safely, and responding to swallowing changes
• Skin integrity, positioning, oral care and infection prevention
• Reducing distress through environment, familiarity and predictable interactions
• Maintaining dignity in personal care and continence support

Where clinical services are involved (district nursing, palliative care), the provider’s role is often coordination and consistent observation, ensuring guidance is implemented correctly.

Operational example 2: swallowing decline managed safely and respectfully

Context: A person with advanced dementia begins coughing during meals and losing weight. Family push for continued “normal meals” while staff worry about aspiration risk.

Support approach: The provider uses a coordinated approach combining risk management, dignity, and family partnership.

Day-to-day delivery detail: Staff record patterns (foods triggering cough, fatigue times) and escalate to relevant clinicians for assessment and guidance. The provider adjusts mealtime routines: smaller portions, calm environment, upright positioning, pacing, and monitoring fatigue. Staff use consistent language with family, explaining risk and the aim of comfort. Where preferences conflict, the provider supports a best-interests discussion (where required) that focuses on the person’s wellbeing and least restrictive options. Any changes to texture or approach are documented clearly in the plan, and staff are briefed to ensure consistent implementation across shifts.

How effectiveness or change is evidenced: Incidents reduce, weight stabilises or decline slows, and family conflict decreases. Records show defensible decisions and consistent application of guidance.

Escalation decisions and avoiding “default 999”

In dementia end of life care, escalation decisions are often the difference between a calm, supported trajectory and repeated crisis episodes. Providers should clarify:

• What can be managed at home/placement and what requires urgent clinical input
• Who is contacted first (GP, 111, community nursing, out-of-hours)
• What information staff must provide (baseline, changes, risks, preferences)
• How decisions are recorded, reviewed and communicated

These processes must be robust enough to work at 2am with an unfamiliar staff member, not only during office hours.

Operational example 3: night-time deterioration managed through a tested escalation plan

Context: A person in supported accommodation deteriorates overnight with breathing changes and agitation. Past incidents led to ambulance calls and hospital transfers, followed by rapid decline and family distress.

Support approach: The provider implements a tested escalation plan aligned with the person’s preferences and agreed clinical input routes.

Day-to-day delivery detail: Staff use a simple escalation tool: baseline status, current symptoms, immediate risks, and what the plan says. They contact the agreed route first (out-of-hours/clinical support) and document advice received. Comfort measures are implemented (positioning, calm environment, reassurance) while awaiting clinical input. The on-call manager supports decision-making and ensures family are updated in a structured, compassionate way. After the event, the team reviews what worked, whether the plan remains appropriate, and what changes are needed.

How effectiveness or change is evidenced: Fewer emergency transfers occur, with clearer documentation of decisions and outcomes. Governance notes show learning and escalation plan refinement.

Commissioner expectation: coordinated pathways and measurable avoidance of crisis escalation

Commissioner expectation: Commissioners expect dementia end of life care to be coordinated and proactive, with evidence that planning reduces avoidable escalation and improves experience. They may look for reporting on hospital admissions, use of urgent services, family satisfaction, and how providers work with primary care/community services to maintain people safely in their chosen setting where appropriate.

Regulator / CQC expectation: person-centred end of life care, consent and governance

Regulator / inspector expectation (e.g. CQC): CQC expects people to be supported to have choice and control, with care that is compassionate, dignified and responsive as needs change. Inspectors often test whether end of life plans are understood by staff, whether families are involved appropriately, and whether decision-making is lawful where capacity is limited. They will look for governance evidence: reviews after crises, learning from incidents, and consistent delivery across shifts.

Governance and assurance: proving the pathway works

To make end of life dementia care audit-ready, providers usually need a small number of repeatable checks: sampling of end of life plans for quality, review of escalation events, audits of symptom/comfort recording, and supervision focused on decision-making and family communication. When these mechanisms are embedded, the service can demonstrate not just that it “cares”, but that it delivers coordinated, safe, person-centred end of life care consistently.