Understanding Distress in Dementia: From Behaviour Labels to Meaningful Support
Distress in people living with dementia is frequently described using behavioural labels that focus on what services find difficult, rather than what the person is experiencing. Effective support requires reframing behaviour as communication and embedding this understanding across care planning, staffing and governance. This article sits within the Distress, Behaviour Support & Meaningful Activity knowledge area and aligns with wider dementia service models used across UK adult social care.
Reframing distress as communication, not behaviour
Distress in dementia often emerges when cognitive decline limits a person’s ability to express pain, fear, boredom or confusion verbally. Shouting, pacing, resistance to care or withdrawal are not symptoms to suppress but signals that something in the environment, routine or interaction is not working.
Services that successfully reduce distress start with a shared organisational understanding that behaviour has meaning. This understanding must be reflected not only in care plans, but in staff induction, supervision, incident review processes and quality monitoring.
Operational example 1: Responding to distress during personal care
Context: A supported living service supporting a woman with moderate dementia noted repeated distress during morning personal care, including shouting and physical resistance.
Support approach: Rather than escalating to behavioural strategies alone, the team reviewed timing, staff approach and environmental factors. Care was moved to later in the morning, lighting was softened, and familiar music was introduced.
Day-to-day delivery: Staff followed a consistent script, explained each step, and offered choices even where capacity was limited. A single staff member led care to reduce sensory overload.
Evidence of effectiveness: Incident reports reduced within two weeks, with improved engagement recorded in daily notes and reflected in monthly quality audits.
The role of meaningful activity in reducing distress
Meaningful activity is not an “extra” but a core preventative strategy. When people are bored, overstimulated or disconnected from their identity, distress increases. Activity planning must be individualised, flexible and embedded into daily routines rather than delivered as isolated sessions.
Operational example 2: Reducing evening agitation through purposeful routine
Context: A residential service identified increased agitation and calling out during late afternoons.
Support approach: Life history work identified the individual had previously worked evenings. Staff introduced light domestic tasks and structured conversation at that time.
Day-to-day delivery: Activities were optional and adapted daily depending on mood and energy levels.
Evidence of effectiveness: Behaviour monitoring charts showed a sustained reduction in evening distress, discussed during supervision and care reviews.
Commissioner expectation: Evidence-led behaviour support
Commissioners expect services to demonstrate that distress is managed through proactive, least restrictive approaches. This includes clear links between assessment, activity planning and measurable outcomes, rather than reliance on reactive or medication-led responses.
Regulator expectation: Understanding behaviour in context
The CQC expects providers to evidence how behaviour is understood in the context of a person’s needs, history and environment. Inspectors look for consistent staff understanding, robust incident analysis and clear learning loops.
Operational example 3: Governance-led learning from incidents
Context: A service saw repeated incidents of distress during mealtimes.
Support approach: Governance reviews identified noise levels and seating arrangements as triggers.
Day-to-day delivery: Dining routines were adapted, with smaller groups and quieter spaces.
Evidence of effectiveness: Incident trends reduced and changes were recorded in governance minutes and inspection-ready evidence.
Embedding sustainable practice
Sustainable reduction in distress requires governance systems that support reflective practice, ongoing staff development and regular review. When behaviour support, meaningful activity and quality assurance align, services deliver safer, calmer and more person-centred care.