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A Structured Approach to Behavioral Disturbances in Dementia

This article provides a step-by-step, structured framework for understanding and responding to behavioral disturbances in dementia. These behaviors—like agitation, aggression, wandering, or fixations—are not random; they are often a form of communication or a response to an unmet need. By following a calm, investigative approach, you can reduce distress for both you and your loved one. You are not alone, and there are concrete, practical steps you can take starting today.

Key points

  • Behavioral disturbances are a form of communication—always look for the underlying cause first.
  • Non-drug approaches are the first-line treatment and should be tried before any medication.
  • Safety is paramount: remove hazards, do not confront, and leave the situation if needed.
  • A consistent daily routine and a calm environment reduce the frequency and intensity of behaviors.
  • Document behaviors with an ABC log to identify patterns and share with healthcare providers.
  • Medications are a last resort and must be used with extreme caution, especially in Lewy body dementia.

What Is Happening and Why

Behavioral disturbances, often called 'behavioral and psychological symptoms of dementia' (BPSD), affect most people with dementia at some point. They are not intentional or personal—they arise from brain changes that impair judgment, emotional regulation, and the ability to communicate needs. Common triggers include pain, infection (especially urinary tract infections), constipation, medication side effects, environmental overstimulation, or unmet needs like hunger, thirst, or the need for activity. The person may feel anxious, out of control, or frightened, and the behavior is their way of expressing this distress.

The Core Principle: Investigate, Don't React

A structured approach means pausing before reacting. Instead of trying to stop the behavior immediately, you become a detective. Look at what happened just before the behavior (the antecedent), what the behavior looks like, and what happens after (the consequence). This 'ABC' approach helps you identify patterns and root causes. For example, if agitation always occurs at bath time, the cause might be fear of water, cold, or a loss of control. Nonpharmacologic interventions are the first-line treatment because they address the underlying cause without the risks of medication. Medications are reserved for severe, persistent distress that does not respond to other measures, and they should always be used in the lowest effective dose and under close medical supervision.

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

Step-by-step

  1. Step 1: Ensure safety first. Remove any weapons, sharp objects, or dangerous items from the immediate area. If you feel threatened, leave the room and give yourself space. Do not try to physically restrain or confront the person. Your safety and the person's safety are the priority.

  2. Step 2: Take a deep breath and calm yourself. Your own anxiety can escalate the situation. Use a soft, slow tone of voice. Say something like, 'I see you are upset. I am here to help.' Avoid arguing, correcting, or using logic.

  3. Step 3: Look for immediate physical causes. Check for signs of pain (facial grimacing, guarding a body part), fever, or discomfort. Ask yourself: When did they last eat or drink? Are they too hot or cold? Do they need to use the bathroom? If you suspect infection or pain, contact their healthcare provider.

  4. Step 4: Assess the environment. Is it too noisy, bright, or crowded? Are there too many people or competing sounds? Reduce stimulation by turning off the TV, lowering lights, or moving to a quieter room. A calm, predictable environment reduces confusion.

  5. Step 5: Redirect to a soothing or engaging activity. Offer a familiar object, like a rummage box (a container with safe items to sort, like fabric squares, large buttons, or soft balls), or a simple repetitive task like folding towels. This gives their hands something to do and can lower anxiety. Say, 'Let's look at these together' rather than 'Stop doing that.'

  6. Step 6: Validate their feelings. Even if what they say is not reality-based, acknowledge the emotion. For example, if they say they want to 'go home' and are agitated, say, 'You miss home. That must be hard. Tell me about your home.' This builds trust and often calms the person.

  7. Step 7: Establish a consistent daily routine. Structure is calming for a brain that struggles with novelty. Keep wake-up, meals, bathing, and bedtime at the same times each day. Give the person at least three to four weeks to adjust to any new routine. Predictability reduces anxiety and the frequency of outbursts.

  8. Step 8: If the behavior persists or escalates, document it. Note the time, what happened before, the behavior itself, and what helped or didn't. Share this log with the person's doctor. This information is crucial for identifying patterns and deciding if a medical evaluation or medication adjustment is needed.

  9. Step 9: Consider a medication review with the doctor. Some behaviors may be worsened by medications (e.g., anticholinergics, benzodiazepines, or certain pain meds). Ask the prescriber to review all drugs, including over-the-counter and supplements, to see if any could be contributing. Never stop or change a medication without medical guidance.

  10. Step 10: If non-drug approaches fail and the person is in significant distress (e.g., severe anxiety, psychosis, or danger to self/others), discuss with the clinician the possibility of a carefully monitored trial of a medication like an atypical antipsychotic or antidepressant. These are not first-line and have serious side effects, so they should be used only when the benefit outweighs the risk and as part of a broader care plan.

What not to do

  • Do not argue or try to reason with the person. Their brain cannot process logic during an episode. This will only increase frustration and agitation. Instead, validate their feelings and redirect.

  • Do not initiate physical contact during an outburst. Touching someone who is agitated can be perceived as a threat and escalate the situation. Wait until they are calm, then offer a gentle hand or a reassuring touch if they accept it.

  • Do not use physical restraints or force. This is traumatic and often makes behaviors worse. If safety is a concern, leave the area and call for help (e.g., another family member or, in an emergency, 911).

  • Do not assume the behavior is 'just dementia' and ignore it. Many behaviors have a treatable medical cause, like a urinary tract infection or pain. Always investigate before labeling it as part of the disease.

  • Do not overmedicate as a first response. Medications should be a last resort, not a quick fix. They can cause sedation, falls, and other serious side effects. Always combine any medication with non-drug strategies.

  • Do not change the routine abruptly without preparation. People with dementia rely on routine. If a change is necessary (e.g., a new caregiver or moving to a new home), introduce it gradually, with lots of reassurance and familiar objects around.

Practical tools

  • The ABC Log

    A simple three-column log: Antecedent (what happened right before), Behavior (describe the action), Consequence (what you did and what happened next). Keep it by the bed or in a notebook. Over a week, patterns will emerge. This is invaluable for doctor visits and for your own understanding.

  • Rummage Box or Fidget Quilt

    A box filled with safe, interesting objects: large wooden spools, fabric swatches, a soft brush, a lock and key, or a small stuffed animal. A fidget quilt has buttons, zippers, and ribbons sewn onto a lap blanket. These provide sensory stimulation and busy hands, reducing anxiety and fixations. You can buy them online or make your own.

  • Calming Phrases Script

    Write down and practice phrases like: 'I see you are upset. I am here with you.' 'Let's take a walk together.' 'You are safe.' 'Tell me what you need.' 'I am sorry this is hard.' Keep this list on the fridge or in your phone. In the heat of the moment, you can read from it.

  • Environmental Checklist

    A short list to run through when behavior escalates: Is the room too bright/dark? Too noisy? Too hot/cold? Are there too many people? Is there a TV or radio on that might be confusing? Is the person hungry, thirsty, or needing the bathroom? Post this checklist near the care area.

  • Sundowning Prevention Kit

    For late-afternoon agitation: Ensure good lighting in the late afternoon (bright, full-spectrum light). Offer a calming activity like listening to soft music, looking at a photo album, or a short walk. Avoid caffeine and sugar after 2 PM. Keep the evening routine predictable and soothing.

  • Pain Assessment Tool for Non-Verbal Individuals

    Use a simple pain scale like the PAINAD (Pain Assessment in Advanced Dementia) which looks at breathing, vocalization, facial expression, body language, and consolability. If you suspect pain, discuss with the doctor about a trial of acetaminophen or other pain relief, as pain is a common hidden cause of agitation.

Discuss with your clinician

Ask the doctor: 'Could a urinary tract infection or other infection be causing this sudden change in behavior?'

Ask the doctor: 'Please review all medications for side effects that could be contributing to agitation or confusion.'

Ask the doctor: 'If non-drug approaches are not enough, what is the safest medication option for this specific type of dementia?'

Ask the doctor: 'How do we monitor for side effects if we start a new medication?'

Ask the doctor: 'Are there any non-drug therapies like occupational therapy, music therapy, or cognitive rehabilitation that could help?'

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