Change the first question
Words such as difficult, aggressive or non-compliant describe how behaviour affects other people. They do not explain what is happening for the person. A more useful first question is: ‘What might this person be communicating?’ Changed behaviour is not necessarily deliberate. It may be the clearest available signal that something feels unsafe, painful, confusing or out of control.
Check the body first
Look for pain, hunger, thirst, constipation, infection, tiredness, temperature, medication effects, poor hearing or a need for the toilet. A sudden or marked change deserves medical attention, particularly when the person seems unwell or the behaviour is unlike their usual pattern. Do not assume dementia explains everything.
Check the environment
Noise, glare, crowds, unfamiliar faces and too many instructions can overwhelm a brain working harder to understand its surroundings. Reduce stimulation. Move to a quieter space. Slow your movements and lower your voice. Ask whether the task can wait. Sometimes the most effective response is changing the environment, not changing the person.
Check the approach
Were choices removed? Was personal care started without warning? Is the person being rushed, corrected or surrounded? Step back, introduce yourself again and explain one action at a time. Offer a genuine choice. A refusal may be a request for privacy, more time, a different worker or a different way.
Record patterns without blame
Note what happened before, what the person did, and what helped afterwards. Include sleep, food, health, people, time and place. Patterns can reveal triggers and successful responses. Keep descriptions neutral and specific. ‘Pushed the plate away after three prompts’ is more useful than ‘refused dinner’.
Safety matters
If anyone is in immediate danger, prioritise safety and seek urgent help. For ongoing distress, involve the GP and relevant dementia support services. The goal is not to excuse harm. It is to understand causes, reduce preventable distress and respond in a way that protects everyone’s dignity.
A simple observation example
Suppose Sam begins pacing and calling out every afternoon. The label ‘agitation’ does not reveal much. A neutral record shows that it starts around 3.30 pm, the corridor becomes noisy during shift change, Sam has usually been sitting for two hours, and he settles after going outside with one familiar worker. That pattern suggests several possibilities: noise, a need for movement, fatigue or an old home-going routine. It gives the team reasonable, low-risk changes to try and information to take to a clinician if the pattern continues.
Do not make one person carry the puzzle alone
Families may know history and preferences; workers may notice timing and environmental patterns; nurses and doctors can investigate health causes; allied health professionals may assess communication, pain, mobility or sensory needs. Bring these perspectives together with the person at the centre. Share only through appropriate channels and with consent or lawful authority. A coordinated response is safer than each person improvising. It also reduces the chance that distress is repeatedly triggered because helpful knowledge never reaches the next shift.
Language changes the response
Compare ‘Mary was aggressive at shower time’ with ‘Mary pushed my hand away when I reached for her shirt before explaining what I was doing’. The second description identifies an action, context and possible trigger. It does not minimise risk, but it offers something to change. Use words that describe what was seen and heard, not a judgement about character. This protects dignity and improves problem-solving. The behaviour is real; the label is not the whole story.
A note for the person receiving support
If you are the person experiencing distress, your behaviour should not be discussed as though you are the problem. You deserve a health check when something changes, an environment you can tolerate and people who explain before they act. Your refusal, movement, expression or silence may contain important information. Supporters should remain curious and respectful.
A small action for this week
Use the Distress Decoder after one non-urgent event. Record the before, behaviour and response in neutral language. Try one low-risk change and review the result. If the change was sudden, severe or accompanied by illness, pain or altered consciousness, seek medical advice rather than continuing to experiment at home.
A gentle next step
Communication can be a useful first place to begin. Read How to Communicate When Dementia Changes the Conversation for practical, gentle strategies.
This article provides general information and does not replace advice from your doctor or another qualified professional.