Changed Behaviour and Dementia: What It Means and What to Do

Changed behaviour and dementia: what it means and what to do

A man with dementia becomes agitated every afternoon around four o’clock. He paces, tries doors, says he has to go, becomes angry when redirected. The shift notes record “aggressive behaviour, 4pm, redirected with difficulty” for eleven days running.

On the twelfth day somebody notices that four o’clock is when he used to pick his daughter up from school, every weekday, for nine years.

That is the central idea of this guide, and it is not sentimentality. Changed behaviour in dementia is almost always communication, an unmet need, or a response to the environment — and it is treated as a symptom to be suppressed far more often than as information to be read.

Getting this right is the difference between a person being medicated and a person being understood, and it is also, bluntly, the difference between a placement that holds and one that fails.

Start with what it is not

It is not deliberate. The language used — manipulative, attention-seeking, non-compliant, resistive — attributes intention to behaviour produced by a damaged brain in an unmet situation. It is also self-fulfilling: once a person is described that way, the response changes and the behaviour worsens.

It is not inevitable. A substantial proportion of what gets called “behaviours of dementia” is caused by pain, infection, medication, boredom, noise, an unfamiliar environment, a rushed worker or a demand the person could not meet. All of which can be changed.

It is not the person’s personality emerging. Disinhibition is a frontal lobe symptom, not a revelation.

And it is not a reason to reach for medication first, which is both the most common response and the least effective.

The order of investigation

This sequence matters more than any technique, and it is the bit that gets skipped.

1. Delirium — always first

Any sudden change in behaviour or confusion in a person with dementia is delirium until proven otherwise.

Delirium develops over hours to days, fluctuates, affects attention and conscious level, and is caused by something physical: urinary tract infection, chest infection, dehydration, constipation, pain, medication change, retention of urine, electrolyte disturbance, alcohol withdrawal.

It is reversible when the cause is treated, and it is frequently missed because everybody attributes the change to the dementia progressing.

So: a person with dementia who is suddenly much worse needs a medical review the same day — a urine culture, a look for infection and constipation, a medication check. Not a behaviour plan.

2. Pain

Chronically under-recognised, because people with dementia under-report it and because standard pain questions require memory and language.

Look for: grimacing, guarding, resisting being moved or washed, agitation during personal care, groaning, changed walking, loss of appetite, new restlessness. Common sources: arthritis, dental pain, constipation, pressure areas, urinary retention, ingrown toenails, old fractures, reflux.

A trial of regular simple analgesia — paracetamol given at scheduled times rather than on request — is a legitimate and under-used diagnostic step. If behaviour improves, you had pain.

3. Unmet physical needs

Hunger, thirst, needing the toilet, too hot, too cold, tired, uncomfortable clothing, a full bladder, badly fitting shoes, hearing aid not in, glasses not on.

The last two deserve emphasis. Uncorrected hearing and vision loss is one of the biggest drivers of distress and apparent confusion in dementia, and it is cheap to fix and routinely neglected. A person who cannot hear what is being asked of them and cannot see who is asking will look confused and may become frightened.

4. Medication

Review everything. Sedating medications worsen confusion and falls. Anticholinergics impair cognition. A recently changed or added drug is a prime suspect. Opioids, benzodiazepines, anticholinergic bladder medications and older antihistamines all contribute.

5. The environment

Noise, clutter, poor lighting, glare, mirrors, television, too many people, an unfamiliar place, shadows, a patterned floor that looks like water, a dark doorway that looks like a hole.

6. The approach

Being rushed. Being told what to do. Being corrected. Being touched without warning. Two people giving instructions at once. A worker the person does not know. A task with too many steps. Being asked a question that requires memory.

A large share of incidents during personal care are produced by the approach rather than by the task.

7. Unmet psychological needs

Boredom — which is enormous and under-recognised. Loneliness. Loss of role and purpose. Fear. Grief. Feeling useless. Having nothing to do all day.

8. Only then, the dementia itself

Some behaviour is driven directly by the brain changes, particularly in frontotemporal dementia. But it is the last explanation to reach for, not the first, and reaching for it first is how people end up medicated for a urinary tract infection.

The common presentations, and what usually lies behind them

Walking with purpose — frequently called wandering, which is a poor term because it implies aimlessness. Usually it has a reason: looking for someone, going to work, going home, needing the toilet, pain, boredom, or needing to move. The useful response is to work out the reason, provide a safe space to walk, and address the underlying need. Not to lock a door, which is both ineffective and a restrictive practice.

Going home. One of the most distressing for families, because the person is already home. “Home” here is usually not an address — it is a feeling of safety and belonging that is missing right now. Arguing about the address never works. Acknowledging the feeling does: “you’re missing home — tell me about it.”

Agitation at a particular time, often late afternoon or early evening. Causes include fatigue, reduced light, shift changeover, hunger, over-stimulation accumulated through the day, and — as in the example at the top — a former routine. Check the clock before anything else.

Resisting personal care. Almost always about the approach, pain, cold, fear, embarrassment, or not understanding what is happening. Showering is a frightening experience if you do not know why a stranger is removing your clothes. Slow down, explain at each step, warm the room, cover the person, and ask whether a wash is adequate today.

Repeated questions. The person is not remembering the answer, and frequently the real content is anxiety rather than information. Answering the anxiety works better than answering the question for the fortieth time. Write the answer down and hand it over.

Accusations — that things have been stolen, that a partner is unfaithful. Distressing and usually arising from not being able to find something, or from a genuine inability to reconstruct events. Do not argue, do not defend. Help look for the item.

Suspicion and paranoia, which can also indicate delirium, pain, or in Lewy body dementia, hallucinations.

Hallucinations. Common in Lewy body dementia, often of people or animals, and frequently not distressing initially. Do not argue about whether they are real. If they are not frightening the person, they may not need treating at all.

Sexual disinhibition, which needs a consistent, neutral, written response rather than improvisation, and protection for workers.

Shouting or calling out, frequently pain, boredom, fear or sensory deprivation.

What actually helps

Consistency. The same people, the same order, the same words. For dementia this is close to a clinical intervention rather than a preference, and high staff turnover is one of the commonest reasons a situation deteriorates.

Routine, because it requires no planning from the person.

Reduce demands and slow down. More incidents are caused by being hurried than by anything else.

One instruction at a time, and warn before touching or moving.

Meaningful activity. The single most under-used intervention. Boredom causes an enormous amount of behaviour, and activity does not mean entertainment — it means something that uses the person’s identity. Folding washing, sorting tools, gardening, feeding a dog, peeling vegetables, music they chose. For younger onset, age-appropriate activity is essential: a 54-year-old does not want a singalong. See younger onset dementia.

Music, which reaches people reliably and late, and works best when it is music they chose rather than generic.

Validation rather than correction. Respond to the emotion rather than the factual content. Our communication guide covers how.

Fix the hearing and the vision.

Light, and more of it, especially in the afternoon.

Exercise and outdoor time, which reduce agitation and improve sleep.

Keep a behaviour diary for two weeks — what happened, exactly when, who was present, what preceded it, what helped. Patterns emerge and they are usually obvious once written down. This single document does more than most interventions.

Who to call

Dementia Support Australia — 1800 699 799, 24 hours, free.

This is the service most people do not know exists, and it is good. It operates the Dementia Behaviour Management Advisory Service (DBMAS) for behaviours affecting care, providing short-term case management and tailored recommendations, with a community team supporting carers at home as well as residential services — and the Severe Behaviour Response Teams (SBRT), 24/7 mobile dementia specialists for more severe behavioural and psychological symptoms.

Eligibility requires a diagnosis of dementia or suspected dementia, behaviours affecting care or a risk of that in the community, and consent from the person or their nominated decision-maker. People living at home are included.

The National Dementia Helpline — 1800 100 500, 24 hours, free, run by Dementia Australia.

Your GP, for the medical workup that should precede any behaviour plan.

A dementia-experienced occupational therapist, for environmental assessment — at $193.99 per hour under the 2026–27 NDIS price limits.

Medication, and the restrictive practice question

Medication has a place and it is used far more often than it should be.

Antipsychotics for behaviour in dementia carry increased risk of stroke and death, cause sedation that worsens confusion and falls, and have modest benefit. They are appropriate for severe distress, psychosis or risk where other approaches have failed — not as a first response.

A specific safety point: people with Lewy body dementia can have severe, sometimes life-threatening sensitivity to antipsychotics. If there is fluctuating cognition, visual hallucinations or parkinsonism, that must be raised before any antipsychotic is started.

Benzodiazepines increase falls and confusion.

Pain relief, by contrast, is under-used, and a scheduled analgesia trial is often the better first move.

For NDIS participants, there is a regulatory layer

This matters and it is frequently not understood by providers who come from an aged care background.

For an NDIS participant, medication given primarily to influence behaviour rather than to treat a diagnosed condition is chemical restraint — one of five regulated restrictive practices, alongside seclusion, mechanical restraint, physical restraint and environmental restraint.

That triggers specific obligations: a behaviour support plan written by a registered NDIS behaviour support practitioner, authorisation under state or territory requirements, lodgement with the NDIS Commission, monthly reporting, and a documented strategy to reduce and eliminate the practice. Using a regulated restrictive practice without authorisation or without a plan is a reportable incident.

And note what else that captures: a locked door, a locked kitchen, a restricted garden or a held phone is environmental restraint. Which is directly relevant here, because the instinctive response to a person walking with purpose is to lock a door.

The full requirements are in behaviour support and restrictive practices, which applies identically to dementia.

The behaviour diary, and why it is the whole intervention

If you take one practical action from this guide, keep a record for a fortnight. It does more than any technique, it costs nothing, and almost nobody does it.

What to record, each time something happens:

Two weeks of that produces patterns that are usually obvious in hindsight and invisible without it. The commonest things it reveals:

A time of day. Almost every pattern has one, and it is frequently late afternoon.

A person. Incidents clustering around one worker is information about the approach, not about the person with dementia.

A trigger that nobody had connected — the shower, a particular television programme, visitors, the vacuum cleaner, a specific phrase.

An unmet need with a schedule. Incidents at 4pm and nobody has eaten since noon.

What works. The diary records the successful responses too, which is how a consistent plan gets written instead of each worker improvising.

Take it to the GP, to Dementia Support Australia, and to any behaviour support practitioner. A fortnight of specific dated observations changes what those services can do for you, and it is the difference between “he gets agitated in the afternoons” and a problem somebody can actually solve.