Understanding Distress in Dementia: Moving Beyond “Challenging Behaviour”
Distress in dementia care is frequently recorded as “challenging behaviour”, yet this label often obscures the real causes and leads to reactive responses that fail to improve outcomes. When services understand distress as communication rather than misconduct, support becomes preventative, proportionate and evidence-led. This article forms part of the Distress, Behaviour Support & Meaningful Activity knowledge set and aligns with best practice across recognised dementia service models used in UK adult social care.
Why “challenging behaviour” is the wrong starting point
The term “challenging behaviour” describes the impact of behaviour on others, not the experience of the person. In dementia care, this framing risks positioning the person as the problem rather than the situation, environment or unmet need.
Distress may present as shouting, withdrawal, refusal, pacing or aggression, but these behaviours are typically responses to confusion, fear, discomfort, loss of control or sensory overload. When staff start with “how do we stop this behaviour?”, opportunities to prevent it are missed.
Commissioner expectation: proactive understanding, not reactive control
Commissioners expect providers to demonstrate that distress is assessed, analysed and addressed proactively. Repeated incident reports without changes to care planning are often interpreted as evidence of weak analysis rather than complexity.
Evidence commissioners look for includes behaviour mapping, identifiable triggers, planned preventative actions and clear review points showing learning over time.
Regulator expectation (CQC): personalised care and least restrictive responses
CQC inspections focus on whether staff understand why a person becomes distressed and how their care is adapted accordingly. Inspectors will explore whether staff responses reduce distress or inadvertently escalate it through repeated prompting, restriction or lack of flexibility.
Understanding the common drivers of distress
Although each person is unique, distress in dementia commonly arises from:
- unmet physical needs (pain, hunger, toileting, fatigue)
- cognitive overload (too much information, rushed interactions)
- loss of autonomy (being directed rather than involved)
- environmental stressors (noise, crowding, unfamiliar spaces)
- emotional triggers (grief, fear, perceived threat)
Effective services routinely test these factors rather than defaulting to behaviour management strategies.
Operational example 1: distress driven by pain misinterpreted as aggression
Context: A person living with dementia frequently lashed out during transfers. Incidents were recorded as “aggression”, and staff became increasingly cautious and directive.
Support approach: A behaviour review identified that distress occurred mainly during standing and turning. A pain assessment revealed untreated arthritis.
Day-to-day delivery detail: Pain management was reviewed with healthcare input. Transfers were slowed, staff used consistent reassurance, and manual handling techniques were adapted. Staff were briefed to look for early pain indicators rather than reacting to resistance.
How effectiveness is evidenced: Incident frequency reduced, and daily notes recorded improved cooperation. Review meetings linked reduced distress directly to the change in approach.
Operational example 2: environmental overload in communal spaces
Context: In a residential setting, a person became distressed and shouted most afternoons in the lounge. Staff described the behaviour as unpredictable.
Support approach: Observation showed distress coincided with increased noise, staff shift change and television volume.
Day-to-day delivery detail: The person was offered a quieter alternative space during peak times, with a familiar activity and one-to-one interaction. Staff reduced environmental noise and avoided group prompting.
How effectiveness is evidenced: Distress incidents reduced significantly during afternoons. Environmental adjustments were documented and reviewed as part of quality assurance.
Operational example 3: distress linked to loss of autonomy
Context: A person frequently refused support and became verbally distressed when staff insisted on routines.
Support approach: Review identified that distress occurred when choices were removed or rushed.
Day-to-day delivery detail: Staff introduced simple choice-making, flexible timing and involvement in small decisions. Prompts were rewritten to avoid commanding language.
How effectiveness is evidenced: Engagement improved, refusals decreased and staff confidence increased, evidenced through supervision and incident trend analysis.
Governance: embedding understanding across the service
Understanding distress requires system-wide consistency. Effective governance includes:
- regular review of incident themes, not just counts
- training that focuses on meaning and prevention
- supervision that explores emotional impact on staff
- care plan audits testing whether learning is applied
Practical takeaway: distress is information, not disruption
When distress is treated as communication, services move from control to care. This approach reduces incidents, strengthens inspection outcomes and improves quality of life for people living with dementia.