Reviewing Dementia Support During Health Deterioration and End-of-Life Transitions
Physical deterioration, frailty and approaching end of life often expose gaps in dementia assessment and review. Changes can be rapid, unpredictable and emotionally charged, increasing the risk of poor coordination, over-intervention or unsafe drift. This article sits within Assessment, Review & Changing Needs and links to Service Models & Care Pathways, because review responsibilities differ across care homes, homecare and supported living.
Why deterioration demands proactive review
In dementia services, deterioration is often gradual until it is not. Missed reviews lead to unnecessary hospital admissions, unmanaged pain, distress and safeguarding risk.
Common warning signs include:
- Reduced mobility or increased falls
- Changes in eating, drinking or swallowing
- Increased sleep, withdrawal or agitation
- Frequent health call-outs
What an effective deterioration review covers
- Physical health changes and symptom management
- Impact on cognition, communication and distress
- Capacity and consent for new decisions
- Escalation thresholds and out-of-hours guidance
- End-of-life wishes where known
Operational example 1: Care home review after repeated falls
Context: A resident with dementia experiences multiple falls over two weeks.
Support approach: The service triggers a multidisciplinary review involving GP, family and senior staff.
Day-to-day delivery detail: The care plan is updated to include assisted transfers, environmental changes, hydration support and clear guidance on when hospital transfer is appropriate versus in-house management.
How effectiveness or change is evidenced: Falls reduce, staff confidence improves, and incident data shows a downward trend.
Advance care planning must be living, not historic
Advance care plans and DNACPR decisions must be reviewed as circumstances change. Providers should ensure plans are current, understood and operationalised.
Operational example 2: Homecare review as end-of-life approaches
Context: A person with dementia becomes bedbound and increasingly fatigued.
Support approach: The provider reviews care with district nurses and family to realign goals from independence to comfort.
Day-to-day delivery detail: Visits are restructured to prioritise comfort, pain monitoring, mouth care and emotional reassurance. Escalation guidance is simplified for out-of-hours staff.
How effectiveness or change is evidenced: Distress reduces, family confidence increases, and unnecessary hospital admissions are avoided.
Supported living and end-of-life transitions
Supported living often presents the greatest challenge, as environments are not always designed for palliative care.
Operational example 3: Supported living review before placement change
Context: A person’s needs escalate beyond what the supported living environment can safely provide.
Support approach: A planned transition review is held involving commissioners and family.
Day-to-day delivery detail: The plan sets out interim support, emotional preparation, and continuity measures to reduce trauma.
How effectiveness or change is evidenced: Transition occurs with minimal distress and no safeguarding incidents.
Commissioner expectation: avoidance of crisis-driven decisions
Commissioner expectation: Commissioners expect providers to anticipate deterioration and manage transitions proactively rather than through emergency escalation.
Regulator / Inspector expectation: compassionate, coordinated care
Regulator / Inspector expectation (CQC): Inspectors will look for evidence that reviews reflect changing health needs, end-of-life preferences, and coordinated working with health partners.
Governance: monitoring deterioration and end-of-life reviews
- Track unplanned hospital admissions
- Audit advance care plan reviews
- Sample end-of-life care documentation
- Review complaints linked to deterioration
- Test staff confidence through supervision