Behavioural and psychological symptoms of dementia

Behavioural and psychological symptoms of dementia are the disturbances of mood, perception, thought content and behaviour that accompany cognitive decline. They include agitation, aggression, psychosis, depression, apathy, anxiety, sleep disturbance, wandering and disinhibition. They affect most patients at some point, and they are the main reason for care home admission and carer breakdown.

Clinical relevance. They cause distress to patients and carers, injury, falls, malnutrition, hospital admission and inappropriate sedative use. Many are driven by unmet needs, pain, delirium, medicines or the environment, so assessment before treatment is essential.

Mechanisms. Neurodegeneration of frontal, limbic and subcortical networks, loss of coping ability, communication failure, unmet physical or psychological needs, and environmental stress interact. Cholinergic deficit and monoamine change contribute to psychosis and mood symptoms.

Classification.

• Psychosis: delusions (theft, infidelity, persecution, misidentification) and hallucinations.
• Agitation and aggression: physical, verbal, restlessness, resistance to care, repetitive vocalisation.
• Affective: depression, anxiety, apathy, irritability, euphoria.
• Sleep and circadian disturbance, including evening worsening.
• Disinhibition, hyperorality, and sexual disinhibition.
• Wandering and exit seeking.

Patterns by dementia type. Dementia with Lewy bodies shows well formed visual hallucinations, fluctuation, REM sleep behaviour disorder and severe sensitivity to antipsychotics. Frontotemporal dementia shows early disinhibition, apathy, compulsions and hyperorality. Alzheimer disease shows apathy, delusions of theft and evening agitation. Vascular dementia shows depression and emotional lability.

Key distinctions. Abrupt onset or rapid change over hours to days means delirium until proven otherwise. A symptom is a problem when it causes distress or risk, not simply because it is unusual.

History.

• Define each behaviour: what, when, where, how often, how long, who is present, what happened before and after (an ABC chart kept for 1 to 2 weeks).
• Onset and tempo, relation to a change in medicines, environment, carer or health.
• Pain, constipation, urinary symptoms, thirst, hunger, sleep, vision, hearing, dentition, skin and continence.
• Past psychiatric history, alcohol, risk to self and others, and previous response to treatments.
• Carer wellbeing, strain, and the patient's life history, preferences and routines.

Examination.

• Vital signs, hydration, temperature, oxygen saturation, glucose, bladder scan, rectal loading, skin, pressure areas and mouth.
• Delirium screen (4AT, or the Confusion Assessment Method). Attention testing with months of the year backwards.
• Pain: PAINAD (4 or more suggests clinically significant pain). Depression: Cornell Scale for Depression in Dementia (over 10 probable, over 18 definite major depression).
• Neurological: parkinsonism (rigidity, bradykinesia), new focal signs, gait.
• Medicines: anticholinergic load, benzodiazepines, opioids, corticosteroids, dopaminergic agents, antiepileptics and recent changes.

Red flags.

• Acute onset or rapid fluctuation (delirium).
• Risk of serious harm to self or others, or severe distress.
• Suicidal thoughts or refusal of food and fluids.
• New focal neurological signs, headache, head injury or falls.
• Fever, hypoxia, dehydration or sepsis.
• Severe rigidity, sedation or autonomic instability after an antipsychotic (neuroleptic sensitivity in Lewy body disease, or neuroleptic malignant syndrome).
• Signs of abuse or neglect.

Special groups. In care homes, review staffing, routines and communication. In younger onset dementia, tailor services and consider frontotemporal disease. Check capacity for each decision and use best interest processes where capacity is lacking.

Acute and reversible causes.

• Delirium from infection (urinary tract infection, pneumonia, skin), dehydration, hypoxia, drugs, withdrawal, metabolic disturbance, pain, urinary retention or constipation.
• Hypoglycaemia, hyponatraemia, hypothyroidism, B12 deficiency.
• Subdural haematoma, stroke, seizure (including non-convulsive).
• Alcohol use and withdrawal, Wernicke encephalopathy.

Unmet physical need. Pain, hunger, thirst, tiredness, constipation, incontinence discomfort, sensory impairment, poorly fitting dentures or footwear.

Medicine related. Anticholinergics, benzodiazepines and Z drugs (paradoxical agitation), opioids, corticosteroids, levodopa and dopamine agonists, antiepileptics, quinolones, and akathisia from antipsychotics.

Primary psychiatric disorders. Depression, mania, generalised anxiety disorder, late onset delusional disorder and schizophrenia, and psychotic depression.

Dementia subtype related. Dementia with Lewy bodies, Parkinson disease dementia, frontotemporal dementia, Alzheimer disease, vascular dementia.

Sleep disorders. REM sleep behaviour disorder, obstructive sleep apnoea, circadian rhythm disruption, restless legs.

Environmental and social. Noise, glare, overcrowding, unfamiliar carers, boredom, loss of routine, inadequate communication, and abuse or neglect.

Step 1. Exclude delirium and an acute medical or drug cause before labelling a behaviour as dementia related. Review the medicines list with a pharmacist.

Step 2. First line investigations: full blood count, urea, creatinine, electrolytes, corrected calcium, glucose, liver tests, TSH, B12, folate, CRP. Urinalysis only if urinary symptoms, fever or delirium are present, since bacteriuria without symptoms is common and should not be treated. Oxygen saturation, ECG (QTc before any antipsychotic or citalopram), and chest radiograph if respiratory signs.

Step 3. Targeted investigations: CT head for acute change, falls, new focal signs, anticoagulation or head injury. EEG for suspected non-convulsive seizures or fluctuating consciousness without another cause. Polysomnography for suspected REM sleep behaviour disorder or sleep apnoea. Dopamine transporter imaging when Lewy body disease is uncertain and would change management.

Step 4. Structure the symptoms: Neuropsychiatric Inventory (frequency and severity by domain, with caregiver distress), Cohen-Mansfield Agitation Inventory, ABC charts, and a risk assessment.

Limitations. Self report is unreliable in advanced dementia. Urine dipsticks are positive in many asymptomatic older adults. Scales measure change but do not identify the cause.

Principles. Treat the cause, use non-drug measures first, and reserve drugs for severe distress or risk. Every psychotropic needs a documented indication, target symptom, review date and attempt to withdraw.

Non-drug measures.

• Person centred care plan: life story, preferred routines, familiar carers, consistent staff.
• Treat pain and physical discomfort. Correct vision and hearing, provide dentures, fluids and food.
• Structured daily activity, exercise, music, reminiscence, sensory activities and outdoor access. Evidence for aromatherapy is limited.
• Reduce noise and glare, use clear signage, daylight in the morning, and a quiet dark room at night. Treat sleep apnoea and avoid caffeine and late naps.
• Carer education, respite and support.

Analgesia. Paracetamol 1 g orally every 6 hours for up to 2 weeks as a time limited course for suspected pain. Maximum 4 g daily (3 g daily if weight under 50 kg, malnutrition, alcohol excess or liver disease). Monitor liver tests and behaviour; continue if agitation improves.

Escalate analgesia depending on the pain assessment before starting a psychotropic.

Depression and anxiety with distress. Sertraline: 25 mg orally once daily for 1 week, then 50 mg. Increase in steps of 25 to 50 mg no more often than weekly to a usual 50 to 100 mg; maximum 200 mg daily.

Review at 4 to 6 weeks. Monitor sodium at 2 and 4 weeks, falls, bleeding risk with anticoagulants and NSAIDs, and serotonin toxicity. Halve the dose in hepatic impairment; withdraw gradually over 4 weeks. Evidence for antidepressants in dementia related depression is limited.

Severe agitation or psychosis with distress or risk of harm.

• Risperidone: 0.25 mg orally at night or twice daily, increase by 0.25 mg no more often than every 2 to 3 days to a usual 0.5 mg twice daily; maximum 1 mg twice daily.
• Use risperidone for the shortest time, review at 4 to 6 weeks and attempt withdrawal by 3 months. Before starting obtain consent or best interest decision, ECG, blood pressure, glucose and lipids.
• Monitor sedation, orthostatic hypotension, extrapyramidal signs, falls, swallowing, QTc and weight. Reduce the starting dose to 0.25 mg once or twice daily in kidney or liver impairment.
• Antipsychotics raise the risk of stroke, pneumonia, falls, venous thromboembolism and death in dementia, so counsel patients and carers on the balance.
• Avoid antipsychotics in dementia with Lewy bodies and Parkinson disease dementia if possible because of severe sensitivity reactions. If essential, use quetiapine 12.5 mg orally at night, increased by 12.5 to 25 mg every 3 to 7 days to a maximum 150 mg daily, under specialist advice, with the same monitoring.
• Cholinesterase inhibitors: donepezil 5 mg orally at night for 4 to 6 weeks then 10 mg at night (maximum 10 mg daily). It may reduce psychosis and apathy in dementia with Lewy bodies and Alzheimer disease.
• Donepezil monitoring: pulse, syncope, nausea, weight and urinary symptoms. Avoid with bradycardia under 50 beats/min, sick sinus syndrome or heart block.
• Memantine: 5 mg orally once daily, increased by 5 mg weekly to 20 mg daily (maximum 20 mg daily; 10 mg daily if CrCl 5 to 29 mL/min). Monitor dizziness, blood pressure and seizures.
• Avoid benzodiazepines and anticholinergics for routine behavioural control. Avoid sedating drugs for sleep, and use melatonin modified release 2 mg orally at night for 4 to 13 weeks if a sleep drug is needed, with limited evidence.

Emergency sedation for dangerous agitation after de-escalation fails. Haloperidol 0.5 mg orally or intramuscularly, repeat once after 1 hour if still dangerous; maximum 3 mg in 24 hours in older adults. Check ECG first (avoid if QTc over 500 ms).

Monitor sedation, respiration, blood pressure and extrapyramidal signs every 15 minutes for the first hour. Avoid haloperidol in Lewy body disease and Parkinson disease.

In those patients, use lorazepam 0.5 mg orally or intramuscularly, repeat after 1 to 2 hours if needed; maximum 2 mg in 24 hours; monitor respiratory rate and saturation; reduce the dose in respiratory disease and frailty.

Monitoring. Review behaviours and drug effects weekly at first, then at 4 to 6 weeks, then at least every 3 months. Withdraw antipsychotics gradually, reducing by 25 to 50% every 1 to 2 weeks while monitoring for relapse.

Referral and escalation. Old age psychiatry or a specialist memory service for severe psychosis, risk, diagnostic uncertainty or failed first steps. Neurology for atypical parkinsonism. Social care and safeguarding for suspected abuse or carer breakdown. Palliative care in advanced dementia.

Admission criteria. Delirium needing inpatient treatment, danger to self or others, suicidal intent, dehydration or refusal of food, injury, severe adverse reaction to antipsychotics, or failure of community care.

Discharge and safety netting. Discharge with a behaviour plan, medicines list with review dates, and a named contact. Carers are told to seek urgent help for sudden change in behaviour, fever, a fall, severe drowsiness, stiffness, or reduced intake over 24 hours.