Risk Enablement in Advanced Dementia: Supporting Choice When Capacity Is Reduced
Advanced dementia presents some of the most complex risk decisions in adult social care. As capacity reduces, services can become increasingly restrictive, often out of fear rather than evidence. Positive risk-taking remains essential at this stage, ensuring that safety does not come at the cost of humanity. When embedded within positive risk-taking frameworks and aligned to robust dementia service models, providers can continue to support choice through best-interest, least restrictive practice.
Why advanced dementia often triggers over-control
In later-stage dementia, increased physical frailty, communication barriers and cognitive decline can prompt services to default to containment: limiting movement, rigid routines and task-focused care. While well-intentioned, this often increases distress and reduces quality of life.
Risk enablement at this stage focuses on comfort, familiarity and emotional wellbeing, not just physical safety.
Applying positive risk-taking through best-interest decisions
Where capacity is limited, positive risk-taking relies on:
- Clear capacity assessment
- Best-interest decision-making involving those who know the person well
- Understanding the person’s past wishes and values
- Balancing emotional harm alongside physical risk
- Regular review and adaptation
Operational example 1: Mealtime choice despite aspiration risk
Context: A person with advanced dementia had swallowing difficulties. Clinical advice suggested texture-modified diets, but the person became distressed and refused food.
Support approach: A best-interest decision supported a balanced approach: safer textures most of the time, with small amounts of preferred foods under supervision.
Day-to-day delivery detail: Staff followed clear guidance on pacing, positioning and monitoring, documenting responses and tolerance.
Evidence of effectiveness: Nutritional intake improved and distress reduced, with governance records evidencing proportionality.
Operational example 2: Supporting movement in late-stage dementia
Context: A resident with advanced dementia was discouraged from walking due to falls risk.
Support approach: The service introduced supported walking at key times, using staff assistance and safe routes.
Day-to-day delivery detail: Staff logged participation and signs of fatigue, adapting support daily.
Evidence of effectiveness: Reduced agitation, improved sleep, and no increase in serious falls.
Operational example 3: Emotional risk and meaningful routine
Context: A person became distressed when prevented from engaging in familiar routines.
Support approach: Staff enabled the routine with supervision rather than preventing it.
Day-to-day delivery detail: Consistent staff supported the activity at agreed times, reducing anxiety.
Evidence of effectiveness: Emotional wellbeing improved and behavioural incidents reduced.
Commissioner expectation
Commissioner expectation: Commissioners expect services to evidence that quality of life remains central even in advanced dementia, with clear best-interest decisions and proportionate risk management.
Regulator expectation (CQC)
Regulator / Inspector expectation (CQC): CQC expects providers to avoid blanket restrictions in advanced dementia and to demonstrate least restrictive, compassionate care aligned to individual needs.
Governance and assurance mechanisms
- Best-interest decision records linked to care plans
- Regular MDT review of risk decisions
- Family involvement and transparency
- Outcome-based review rather than task compliance
Practical takeaway
Positive risk-taking remains essential in advanced dementia. When grounded in best-interest decision-making and strong governance, it enables dignity, comfort and meaningful life to continue safely.