01OverviewDefinition, clinical context and the essential points that orientate the chapter.
Behaviour is communication embedded in context. Agitation, shouting, wandering, resistance, apathy, sleep reversal, hallucinations or sexual disinhibition can arise from dementia pathology, but an abrupt change is delirium until assessed. Ask staff or carers for an antecedent-behaviour-consequence account and look for pain during movement or care, constipation, retention, dehydration, infection, breathlessness, hunger, unfamiliar carers, hearing or visual impairment, boredom, crowding, fear and cultural misunderstanding. Review anticholinergics, opioids, sedatives and recent withdrawal. A personalised formulation may reveal that apparent aggression occurs only during painful washing or that repeated walking expresses a former routine. Address the cause and modify the interaction before suppressing the response.
NICE restricts antipsychotics to risk of harm or severe distress from agitation, hallucinations or delusions after benefits and harms are discussed. Risks include stroke, increased mortality, sedation, falls, aspiration, extrapyramidal effects and metabolic disturbance. Risperidone has a narrow UK licence for short-term, up to 6 weeks, treatment of persistent aggression in moderate-to-severe Alzheimer disease unresponsive to non-drug approaches when there is risk of harm. Haloperidol's licence covers persistent aggression and psychotic symptoms in moderate-to-severe Alzheimer and vascular dementia in defined circumstances, but neurological and cardiac toxicity is substantial. Neither licence converts prescribing into an automatic choice. In Lewy body or Parkinson disease dementia, seek specialist input because sensitivity can be catastrophic. Continue psychosocial care during any drug trial and review at least every 6 weeks.
The Mental Capacity Act 2005 provides the framework in England and Wales. Begin by presuming capacity and take practicable steps: optimal time, familiar supporter, interpreter, hearing aids, simple chunks, visual material and treatment of delirium. Identify one actual decision and the information relevant to it. The diagnostic element is an impairment or disturbance of mind or brain; the functional element is inability because of that impairment to understand, retain long enough, use or weigh, or communicate. Retaining information briefly can be enough. An unwise decision does not equal incapacity. If capacity is absent, check valid advance decisions and health-and-welfare lasting power of attorney, involve the person, consider past and present wishes, beliefs and relevant others, and select the least restrictive best-interests option. Serious disputes, deprivation of liberty and treatment contrary to a valid refusal require senior legal processes, not informal family consent.
Key points
- Describe the behaviour precisely—who, when, where, trigger, duration and consequence—rather than using 'challenging behaviour' as a diagnosis.
- Before treatment perform a structured assessment for pain, delirium, infection, hunger, thirst, constipation, urinary retention, sleep, sensory loss, environment and communication.
- Offer psychosocial and environmental interventions first when there is no emergency, matching meaningful activity, routine, lighting, noise and carer approach to the person.
- Antipsychotics are considered only when the person is at risk of harming themselves or others, or has agitation, hallucinations or delusions causing severe distress.
- Use the lowest effective antipsychotic dose for the shortest possible time, reassess at least every 6 weeks and stop if there is no clear ongoing benefit.
- People with dementia with Lewy bodies or Parkinson disease dementia can have severe antipsychotic sensitivity with rigidity, sedation, autonomic collapse or neuroleptic malignant syndrome.
- Capacity is presumed and is specific to the decision and time; a dementia diagnosis, eccentric choice or poor memory score does not establish incapacity globally.
- A person lacks capacity only when an impairment of mind or brain means they cannot understand, retain, use or weigh relevant information, or communicate the decision despite practicable support.
- Best-interests decisions consider the person's wishes, values and relevant others, exclude convenience or age-based assumptions and choose the least restrictive effective option.
02AetiologyUnderlying causes, associations and risk factors, with why each one matters.
Delirium and physical discomfort
Infection, pain, constipation, urinary retention, dehydration, breathlessness and medicine toxicity commonly cause abrupt behavioural change in dementia and should be sought before attributing it to progression.
Unmet need and environment
Hunger, sensory loss, unfamiliar carers, crowding, poor lighting, disrupted routine, boredom or frightening communication can generate distress that is expressed through agitation, withdrawal or resistance.
Neuropsychiatric manifestations
Degeneration of frontal, limbic and perceptual networks can produce apathy, disinhibition, hallucinations, delusions, sleep reversal and impaired emotional regulation.
Medicine and care effects
Anticholinergics, sedatives, opioids, dopamine-active medicines and abrupt withdrawal may worsen behaviour, while restraint or inconsistent responses can amplify fear and agitation.
03PathophysiologyThe causal sequence from the underlying abnormality to symptoms and harm.
- 1Reduced interpretation and control
Dementia impairs memory, language, perception and executive regulation, limiting the person's ability to understand surroundings, express need or adapt to change.
- 2Stress response activation
Pain, physiological illness or confusing care activates threat and arousal systems without adequate cognitive context, producing agitation, wandering, withdrawal or defensive behaviour.
- 3Behavioural reinforcement
Environmental responses such as confrontation, repeated restraint or inconsistent routines may increase distress, while calm personalised communication and correction of triggers can reduce it.
04Clinical features and red flagsSymptoms, examination findings, patterns of presentation and time-critical warnings.
Acute fluctuating attention, altered arousal, sleep-wake reversal or new perceptual symptoms over hours to days indicates urgent delirium assessment even with established dementia.
Distress linked consistently to movement, personal care, noise, hunger, toileting or an unfamiliar approach suggests a modifiable physical or environmental antecedent.
Persistent frightening hallucinations or agitation causing profound distress may justify a cautious antipsychotic discussion after physical and environmental causes are addressed.
Marked rigidity, reduced consciousness, autonomic instability or fever after an antipsychotic in Lewy body or Parkinson dementia is an emergency toxicity signal.
A person may lack capacity for a complex property sale yet retain capacity to choose food or consent to a simple examination after information is adapted.
A superficially coherent decision made under pressure, fear or exploitation requires private assessment and safeguarding rather than assuming either capacity or incapacity resolves coercion.
05InvestigationsWhat to request, why it matters and how to interpret it.
Read from the initial assessment onwards. Tests may run in parallel in urgent care; first-line, preferred, confirmatory, definitive and gold-standard labels appear only when the chapter explicitly states them.
- 01
Structured physical and delirium assessmentFirst step - Why
- Find acute illness, pain and physiological causes behind new behavioural change.
- Interpretation and limitations
- Use observations, examination, 4AT or local tool and focused tests; a positive delirium screen changes treatment from chronic behaviour management to urgent cause correction.
- 02
Antecedent-behaviour-consequence record - Why
- Identify repeatable triggers, consequences and effective non-drug responses across times and carers.
- Interpretation and limitations
- Patterns guide environmental change and create an objective baseline; recording only labels such as aggressive provides little therapeutic information.
- 03
Pain and sensory assessment - Why
- Detect pain, hearing and visual impairment when verbal reporting is limited.
- Interpretation and limitations
- Use observation during movement, facial and vocal cues, collateral and examination; an analgesic trial should have a defined target and safety review.
- 04
Decision-specific capacity assessment - Why
- Establish whether an impairment causes inability to understand, retain, use or weigh, or communicate relevant information.
- Interpretation and limitations
- Document practicable support, relevant information, the person's own reasoning and the causal link; a diagnostic label or outcome disagreement is insufficient.
- 05
Medicine and antipsychotic risk review - Why
- Identify drugs worsening cognition and quantify vascular, cardiac, neurological, metabolic and fall risks before psychotropic use.
- Interpretation and limitations
- Deprescribe contributors where safe; Lewy body features, QT risk, stroke history or severe frailty may make antipsychotic harm especially high.
06Differential diagnosisRealistic alternatives and the features that help distinguish them.
Superimposed delirium
Hours-to-days onset, fluctuation and impaired attention favour delirium from acute illness or medicines rather than a simple step in chronic dementia progression.
Depression or primary psychosis
Persistent low mood, anhedonia or a coherent psychotic syndrome may require specific treatment, although late-onset symptoms still warrant cognitive and medical assessment.
Dementia with Lewy bodies
Well-formed visual hallucinations, marked fluctuation, REM sleep behaviour disorder and parkinsonism suggest Lewy-body disease, with important implications for antipsychotic sensitivity.
Akathisia or other drug effect
Inner restlessness with pacing after dopamine blockade supports akathisia; sedation, rigidity or dyskinesia likewise indicates treatment harm rather than worsening behavioural pathology.
07ManagementImmediate care, first-line treatment, alternatives and escalation.
01Behaviour changeFind the need before choosing a drugFirst stepDistress, agitation, wandering, resistance or perceptual symptoms emerge or worsen.+
- 1Define onset and behaviour precisely, assess immediate harm and perform urgent delirium, pain, retention, constipation, infection and medicine review.
- 2Ask what happens immediately before and after episodes, including staff language, personal-care task, noise, lighting, hunger and sensory access.
- 3EscalationCo-design routine, meaningful activity, communication, comfort and environmental changes with family and care staff, documenting what de-escalates distress.
- 4EscalationMeasure response and reconsider diagnosis before psychotropic escalation, maintaining emergency safeguards when serious harm is imminent.
02Antipsychotic decisionUse a narrow time-limited indicationRisk of harm or severe distress persists despite treatment of causes and personalised non-drug care.+
- 1Document the qualifying target, baseline frequency, dementia subtype, Lewy body features and discussion of stroke, mortality, sedation, falls and movement harms.
- 2Select the least harmful option at the lowest effective dose under current BNF, licence and local specialist guidance, avoiding convenience sedation.
- 3Continue psychosocial measures and review effect and toxicity early and at least every 6 weeks, with family or advocate input where appropriate.
- 4Stop when no clear benefit remains, tapering if needed, and reopen the physical and environmental formulation if behaviour recurs.
03CapacitySupport, test and act lawfullyConsent, residence, finance, medication or another specific decision is disputed or consequential.+
- 1Name the exact decision and optimise time, communication, sensory aids, interpreter, treatment of delirium and access to a trusted supporter.
- 2Explain relevant information and assess understanding, retention, use or weighing and communication, linking any failure causally to impairment of mind or brain.
- 3If capacity is present, respect the decision even if others consider it unwise; address coercion and safeguarding as separate issues.
- 4If capacity is absent, check advance authority, involve the person and relevant consultees, record best-interests reasoning and implement the least restrictive lawful option.
Key medicines and prescribing safety2 treatments · regimens, roles and cautions+
Risperidone
If strictly indicated, use a low geriatric starting dose and titrate cautiously; the licensed persistent-aggression course in Alzheimer disease is limited to 6 weeks.Increased stroke and mortality risk, sedation, falls, orthostasis and extrapyramidal effects require consent and frequent review; avoid reflex use in Lewy body dementia.
Haloperidol
Use only the lowest effective short-term dose within its narrow licence and local specialist protocol after ECG and interaction risks are considered.QT prolongation, torsades, rigidity, dysphagia, aspiration and neuroleptic malignant syndrome are important; severe sensitivity can occur in Lewy body and Parkinson disease dementia.
08ComplicationsImportant consequences, why they occur and why they matter clinically.
Injury and safeguarding harm
Agitation, wandering, self-neglect or impaired judgement can lead to falls, exploitation, malnutrition, unsafe driving or harm during care.
Restraint and medicine toxicity
Physical restriction or sedating antipsychotics can cause aspiration, falls, stroke, extrapyramidal effects and loss of mobility, sometimes worsening the original behaviour.
Loss of supported decision-making
Failure to assess one decision at one time can lead to unjustified removal of autonomy, invalid consent or neglect of a lawful advance decision or representative.
Carer breakdown and institutionalisation
Persistent distress and night-time disruption can overwhelm family or care services, accelerating crisis admission or placement unless carers receive practical and emotional support.
09Monitoring and follow-upTreatment response, safety checks and longer-term review.
- Record the target behaviour's frequency, severity, antecedents and consequences alongside pain, bowel, bladder, sleep and infection indicators.
- For antipsychotics review alertness, mobility, swallowing, falls, orthostatic blood pressure, extrapyramidal signs, weight and relevant metabolic or ECG measures.
- Reassess the indication early and at least every 6 weeks, documenting benefit, ongoing severe-distress or harm threshold and a reduction or stop plan.
- Repeat capacity assessment when the decision, information, communication support or delirium changes; capacity findings do not transfer automatically across time or topics.
- Review carer distress, safeguarding, restrictive practices and deprivation-of-liberty status so household or service strain does not silently determine treatment.
10Special situationsVariants, exceptions and circumstances that change the usual approach.
Behaviour is data
The exact time, task and response can reveal pain or fear more reliably than a retrospective global label and can identify a practical intervention.
Memory is only one capacity component
The Act requires retention only long enough to decide; inability to recall the discussion tomorrow does not by itself prove incapacity today.
Unwise remains autonomous
Capacity law protects choices clinicians dislike, provided the person can make the specific decision without coercion and understands relevant consequences.
Family does not automatically consent
Relatives inform values and may hold formal authority, but next-of-kin status alone does not permit healthcare decisions for an adult lacking capacity.
A prescription needs an exit
Naming a target, review date and stopping criterion at initiation prevents antipsychotic use drifting from emergency symptom relief into indefinite chemical restraint.
11Common pitfallsFrequent interpretation and management errors.
- 01
Calling abrupt agitation progression of dementia without assessing delirium, pain, urinary retention, constipation, hypoxia and medicine toxicity.
- 02
Prescribing an antipsychotic because care is difficult rather than because documented severe distress or risk-of-harm criteria are met.
- 03
Continuing psychotropic repeats without six-weekly reassessment, target measurement or an attempt to stop when benefit is absent.
- 04
Using a dementia diagnosis or low cognitive score as a blanket finding that the person lacks capacity for every present and future decision.
- 05
Treating disagreement as inability to use or weigh information instead of documenting the person's reasoning and causal effect of impairment.
- 06
Accepting informal next-of-kin consent without checking capacity, lasting power of attorney, advance decisions and best-interests requirements.