Managing difficult behaviours at home

The principle

Difficult behaviour in dementia almost always has a cause. The person is not "being difficult"; they are responding to something they cannot otherwise communicate or process. The job of the carer, or the family member trying to help, is to be a detective: identify the trigger, address what can be addressed, and use medication only when other approaches have failed.

The PINCH-ME framework

When something is wrong, run through the PINCH-ME checklist before assuming the dementia is "getting worse":

• Pain. Untreated pain (joints, dental, urinary, abdominal) is the commonest single trigger. Watch for grimacing, guarding, change in mobility.
• Infection. Urinary tract infection and chest infection often present with behavioural change rather than fever or cough.
• Nutrition. Hunger and low blood sugar cause confusion and irritability.
• Constipation. Common and often missed; abdominal discomfort produces restlessness.
• Hydration. Dehydration is a frequent trigger, particularly in hot weather.
• Medication. New medicines, recent dose changes, or accumulated anticholinergic burden.
• Environment. Noise, glare, overcrowding, change of routine, unfamiliar surroundings.

For acute changes, the PINCH-ME check is the first step before anything else. A GP review the same day is appropriate for any sudden change.

Common difficult behaviours and what helps

Repetitive questioning

Driven by anxiety and the inability to retain the answer. Reduce the anxiety: a written note on the table, a clear visible schedule, a reassuring routine. Answer calmly the first few times rather than the tenth.

Refusal of help

Common with washing, dressing, medicines and medical appointments. The usual driver is loss of dignity, fear, pain or simple misunderstanding. Try again later, change who is asking, change the approach (a different order, a different bathroom, a different word). Avoid arguing.

Wandering

Often purposeful from the person's perspective: looking for someone, trying to "go home" (often a childhood home), responding to a perceived need to be somewhere. Practical responses: a daytime activity programme to reduce restlessness, a comfortable walking route, secure but not obvious door locks, a GPS locator device, registration with the Herbert Protocol via local police.

Sundowning

Late-afternoon agitation. Schedule the most demanding tasks earlier; increase light in the late afternoon; offer a calming activity (music, a familiar television programme, a snack and a drink) at the peak time. See sundowning.

Sleep disturbance

Bright morning light, daytime activity, no daytime naps after 3 pm, no caffeine after midday, dim lights and quiet evenings. Treat any underlying Obstructive Sleep Apnoea. See sleep disturbance.

Aggression

Step back, lower your voice, give space, identify the trigger if you can. Most aggressive episodes are reactive: an interaction has felt threatening. Approach from the front, use the person's name, avoid cornering, offer a choice. See agitation and aggression.

Hallucinations and delusional thinking

Hallucinations are most common in Dementia with Lewy Bodies and Delirium. Treat any infection, review medication, optimise vision and lighting. Validate the feeling without endorsing the content. See hallucinations.

Hiding things and accusations of theft

Common. Items get put "somewhere safe" and then forgotten. Avoid arguing about the missing item or the accusation. Provide a known safe place (a drawer that the person can always go to) and check there first.

Designing the environment

A dementia-supportive home reduces behavioural problems more than any single technique:

• Good lighting throughout the day, particularly the afternoon;
• Reduced clutter and visual confusion;
• Familiar objects in familiar places;
• Signage with pictures (bathroom, bedroom);
• A daily plan board visible from the main living area;
• Working hearing aids and glasses;
• Useful occupation: laundry to fold, plants to water, music to listen to, photo albums to browse.

When non-pharmacological approaches are not enough

If structured non-pharmacological approaches have been tried adequately and behaviour is severe, persistent, or putting the person or others at risk, pharmacological treatment may be considered. The framework on the agitation and aggression page sets out the medication options. Specialist memory clinic or older adult psychiatry input is recommended for any antipsychotic prescription.

When to escalate the same day

The following warrant a same-day call to the GP, NHS 111 or 999:

• Sudden severe change in behaviour, especially with fever, pain, breathlessness, vomiting or trauma (likely Delirium);
• Aggression putting the person or others at risk;
• New psychotic symptoms not previously present;
• Recent fall with possible head injury.

When the home setting is no longer safe

Some behaviours cannot be managed safely at home indefinitely. Reflective signals that the balance has tipped include night-time wandering with no safe boundary, persistent severe aggression, repeated wandering despite safety measures, or carer burnout that risks both of you. Planning ahead, before crisis, gives the best outcomes. See care homes and residential options.

Where to get help

You do not have to manage difficult behaviour alone:

• Alzheimer's Society Dementia Connect Support Line: 0333 150 3456;
• Dementia UK Admiral Nurse Dementia Helpline: 0800 888 6678;
• NHS 111 for non-urgent medical concerns;
• 999 for immediate risk;
• Your GP for medication review and any new physical concerns;
• Your memory clinic for specialist behavioural support;
• The Dementia Service for private specialist review.