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Recognizing Agitation as Distress in Dementia

Agitation in dementia is not 'bad behavior' — it is a form of communication, a signal that something is wrong. Whether it shows up as pacing, shouting, hitting, or restlessness, it almost always stems from an unmet need: pain, fear, confusion, overstimulation, or a disrupted body clock. This article helps you decode that distress, step by step, so you can respond with compassion instead of frustration. You are not alone, and there are concrete, evidence-informed things you can try right now to bring calm.

Key points

  • Agitation is a symptom, not a choice — it is a form of communication about an unmet need.
  • Always rule out pain, infection, hunger, thirst, and environmental triggers before assuming it is 'just the dementia.'
  • Sundowning is real and predictable — plan for it with lighting, routine, and calming activities.
  • Your calm, non-judgmental presence is the most powerful de-escalation tool you have.
  • Do not use sedation as a first resort — it can mask underlying problems and cause harm.
  • You are not alone — reach out to support groups, clinicians, and community resources for help.

What Agitation Really Is

Agitation is one of the most common and challenging symptoms across all types and stages of dementia. It is part of a group of symptoms called behavioral and psychological symptoms of dementia (BPSD), which can include aggression, excessive mobility, anxiety, and irritability. Studies show that nearly all people with dementia will experience some form of BPSD at some point, and agitation can appear regardless of whether the person has Alzheimer's, vascular dementia, Lewy body dementia, or another subtype. This is not a sign of a 'bad' person or a failing caregiver — it is a symptom of a brain that is struggling to process the world.

Agitation Is Communication, Not Misbehavior

When a person with dementia becomes agitated, they are trying to tell you something — but they may no longer have the words. As one dementia care expert puts it, 'When a person can no longer communicate verbally, they will use any means available to communicate a need. These other ways of communication may come out exaggerated or inappropriate. It's all they can do.' The person may be in pain, afraid, lonely, hungry, thirsty, or simply overwhelmed by noise or light. They may be experiencing a urinary tract infection or constipation. They may be reacting to a change in routine or a caregiver they don't recognize. The key is to get curious, not defensive.

The Role of Sundowning and Circadian Disruption

Many caregivers notice that agitation worsens in the late afternoon and evening — a phenomenon known as sundowning. This happens because the brain's internal clock, or circadian rhythm, becomes disrupted. As daylight fades, the person may become more confused, disoriented, and anxious. Shadows and dim light can create frightening illusions. The person may pace, try to 'go home,' or become suspicious of others. This is not deliberate — it is a biological response to a brain that can no longer distinguish day from night. Understanding this can help you plan ahead and reduce triggers.

Pain Is a Major, Often Missed Cause

Pain is one of the most common and underrecognized contributors to agitation, especially in people who can no longer describe their discomfort. As one expert notes, 'When we hear the word agitation and without investigating whether there is pain or infection... we go ahead and prescribe a sedating drug so that we don't hear about that agitation anymore.' This is not science-based or compassionate. Instead, look for nonverbal cues: grimacing, guarding a body part, moaning, restlessness, or changes in appetite or sleep. If you suspect pain, discuss it with the person's clinician — do not assume it is 'just the dementia.'

Delirium vs. Dementia: A Critical Distinction

If agitation comes on suddenly — over hours or days — it may be delirium, not a progression of dementia. Delirium is a medical emergency often caused by infection, medication side effects, dehydration, or electrolyte imbalances. Unlike the gradual behavioral changes of dementia, delirium involves fluctuating attention, confusion that comes and goes, and sometimes hallucinations. If you see a sudden change, contact the person's doctor immediately. Do not assume it is 'just sundowning' or 'just the disease.'

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Pause and breathe before you respond. Your calm is a powerful tool. If agitation escalates, step back or leave the room briefly to reset.

  2. Search for an unmet physical need: pain, hunger, thirst, full bladder, constipation, signs of infection, or temperature discomfort. Watch for nonverbal cues like grimacing or guarding.

  3. Adjust the environment: lower TV/radio, dim harsh lights, close curtains to reduce glare. In late afternoon, increase lighting to counter sundowning and follow a consistent pre-bedtime routine.

  4. Offer a purposeful task or comfort item: folding towels, a short walk, soft music, a favorite blanket or photo album. Watch their reaction to touch.

  5. Speak softly, validate, and redirect. Use short sentences: 'I see you are upset. You are safe.' Do not argue or correct. If they say they want to go home, ask 'Tell me about your home.'

  6. Do not crowd, restrain, or block their path. Give them a few feet of distance and let them move away if needed.

  7. Track the episode in a simple log: time, trigger, what helped, what made it worse. Over weeks, patterns will guide your approach.

  8. Lean on others: join a caregiver community like ALZConnected, talk to a dementia care specialist, or share what worked with another caregiver.

What not to do

  • Do not argue or try to reason. A brain with dementia cannot process logic in these moments; validate feelings and redirect instead.

  • Do not raise your voice or show alarm. Speak in a low, calm tone — your calm is contagious.

  • Do not corner, crowd, or restrain. This triggers fight-or-flight. Always leave an open path for them to move away.

  • Do not assume it is 'just the dementia' without first checking for pain, infection, constipation, or medication side effects.

  • Do not reach for sedating medication as a first resort. Try non-drug approaches first; discuss any medication with their clinician.

  • Do not take the outburst personally. The person is not trying to hurt you — they are trying to communicate an unmet need.

Practical tools

  • PAINAD Scale

    A 5-item observational tool (breathing, vocalizations, facial expression, body language, consolability) to assess pain in people who cannot speak. Score 0-2 per item and share total with clinician.

  • The 'Get Curious' Checklist

    When agitation arises, scan: pain, hunger/thirst, bladder/bowel need, temperature, overstimulation, routine change, time of day, fear, medication side effects.

  • Calming Phrases

    Use: 'I am here with you.' 'You are safe.' 'I see you are upset. Let's sit together.' 'Tell me what you need.' Avoid: 'Calm down,' 'Don't worry,' 'You're wrong,' 'Remember...'

  • Sundowning Prevention Kit

    Late-afternoon/eve routine: boost lighting before dusk, close curtains, play calming music, offer warm non-caffeinated drink, quiet repetitive activity, same schedule daily.

  • The 'Go Home' Redirect

    When they say they want to go home, don't correct. Try: 'Tell me about your home. What do you miss?' or 'Let's look at photos together.' Validates without adding confusion.

  • ABC Behavior Log

    Track Antecedent (who, what changed, time), Behavior (exact actions), and Consequence (your response and its effect). Review entries with clinician to reveal patterns.

  • Caregiver Stress Self-Check

    Watch for irritability, exhaustion, withdrawal, changes in sleep/appetite. If present, take a 5-min break, call a friend, or contact a support group.

Discuss with your clinician

If agitation is new, sudden, or worsening — ask: 'Could this be delirium from an infection or medication? Should we do a urine test or blood work?'

If you suspect pain but the person cannot tell you — ask: 'Can we try a pain medication (like acetaminophen) on a scheduled basis for a few days to see if agitation improves?'

If non-drug approaches are not working — ask: 'What are the risks and benefits of any medication you are considering? Are there FDA-approved options for this type of dementia?'

If the person is on an antipsychotic or sedative — ask: 'How often should we try to reduce or stop this medication? What are the side effects I should watch for?'

If the person has Lewy body dementia — ask: 'Are there any medications we should avoid because of sensitivity?'

If the person is nearing end of life — ask: 'What are the signs of terminal agitation, and what comfort measures can we have in place?'

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