Distressed behaviour in dementia can be frightening for the person, family and paid carers. A person may call out, pace, repeat questions, resist support, become upset, try to leave or react strongly to an ordinary request. These actions should not be dismissed as deliberate misbehaviour or treated as a problem to be controlled.

The first question is often: what may the person be trying to communicate, and has anything changed? Comfort, pain, infection, constipation, hunger, thirst, fatigue, unfamiliar surroundings, noise, communication difficulty, fear or a changed routine may all need consideration by the appropriate professional.

The NHS guide to coping with dementia behaviour changes recommends looking for triggers and seeking a GP assessment when behaviour changes suddenly, as the cause may be a health problem. A diary can help organise observations, but it cannot diagnose the cause.

Use these seven checks to prepare a respectful home conversation about distressed behaviour. They are not a clinical behaviour plan, a medication plan, a restraint plan or an instruction to change care. Aeon’s night-time dementia care guide provides related questions where sleep and overnight safety are part of the pattern.

Step 1: Use Respectful, Person-Centred Language

Start by describing what happened without judging the person. Instead of ‘difficult’, ‘aggressive’ or ‘non-compliant’, record observable facts: what was said or done, when it happened, who was present, what was happening beforehand and how the person appeared to feel.

Distressed behaviour may be the person’s way of showing fear, pain, confusion, frustration, boredom, grief, embarrassment or a wish to avoid something. It can also be linked to a health problem that needs assessment. The meaning cannot be decided from one episode or a diagnosis alone.

Ask family and people who know the person well about their history, routines, communication, culture, faith, sensory needs, relationships, likes, dislikes and past roles. Familiar information can make a response more respectful, but it should not become an excuse to ignore a new medical concern.

Aeon’s guide to supporting complex physical and mental health needs at home offers questions about whole-person planning. Diagnosis, mental-health assessment and treatment remain with the appropriate qualified service.

• Record facts rather than labels or blame.
• Ask what the person may be communicating.
• Use history and preferences to support understanding.

Step 2: Notice Patterns and New Changes Safely

Keep a short, respectful record for an agreed period when this is safe. Include time, place, activity, people present, food and drink, toileting, sleep, pain cues, noise, visitors, requests made, the person’s response and what helped. Avoid recording unnecessary private detail.

Distressed behaviour can have a pattern, such as occurring during personal care, at a particular time, after a noisy visit or when the person is hungry or tired. A pattern gives useful information to the person, family, provider and relevant clinician; it does not prove the cause.

Escalate sudden, severe or concerning change rather than waiting for a diary to be complete. New confusion, pain, injury, fever, breathing difficulty, reduced responsiveness, suspected infection, a fall or immediate risk needs the appropriate professional route. Call 999 for a life-threatening emergency or immediate danger.

The NICE dementia recommendations on agitation, aggression and distress say that possible clinical and environmental causes should be explored through a structured assessment. This is a job for the relevant professionals, not an online checklist.

• Keep concise observations that have a clear purpose.
• Look for timing, environment and communication patterns.
• Do not delay urgent assessment for more notes.

Step 3: Check Comfort, Health and Everyday Needs

Before assuming distressed behaviour is part of dementia, consider whether the person may be uncomfortable or unwell. Pain, constipation, infection, hunger, thirst, tiredness, a need for the toilet, poorly fitting equipment, medication effects or a sudden change in mobility are examples that need the right assessment.

Support ordinary comfort with dignity: offer a calm explanation, a drink or toilet if appropriate, a quieter room, time, familiar music, a preferred activity or a pause from a demanding task. These are not a substitute for professional advice where there is a clinical concern.

Care workers and family members should follow the current plan, record observations and report concerns. They should not alter prescribed medicine, introduce unapproved restrictive practices or decide that a new health problem has been ruled out because a familiar strategy appears to help briefly.

Aeon’s article on clinically led home care for complex needs explains questions about oversight and escalation. Clinical leadership supports coordination but does not replace the person’s GP, specialist or urgent-care route.

• Consider comfort and health without self-diagnosis.
• Use agreed, person-specific support approaches.
• Report clinical concerns through the right route.

Step 4: Agree a Clear Support Plan at Home

A home plan for distressed behaviour should be short enough to use and specific enough to guide a real moment. It can cover communication preferences, known comfort measures, early signs, triggers to avoid where possible, what staff should do first, what not to do, records, contacts and review dates.

The plan should be created with the person as far as possible, their family or advocate, and the appropriate professionals. A provider may contribute observations and deliver commissioned support, but it should not present itself as the sole authority for clinical, medication, capacity, safeguarding or legal decisions.

The CQC information on person-centred care requirements reinforces the importance of care reflecting individual needs and preferences. A generic behaviour chart is not a substitute for a plan tailored to the person.

Make sure every regular worker knows where the current plan is stored, who updates it and what to do when the plan no longer fits. A plan copied between households, hospitals or services may miss setting-specific risks and responsibilities.

• Keep the plan personal, current and practical.
• Name who approves changes and who must be contacted.
• Avoid using generic charts as clinical instructions.

Step 5: Make Communication and Environment Easier

Communication can reduce distress when it is calm, simple and adapted to the person. Approach from the front where possible, use their preferred name, explain one step at a time, allow processing time and avoid arguing about a belief or memory that feels real to them.

Check the environment for noise, clutter, glare, shadows, unfamiliar people, too many instructions, lack of activity or lack of privacy. Small changes may help some people, but the response should be tested respectfully and reviewed rather than imposed as a rule for everyone with dementia.

Distressed behaviour during personal care may show that the timing, approach, temperature, communication, privacy, pain, fatigue or task itself needs review. Do not force a task because it is scheduled. Pause and seek appropriate support where there is risk or uncertainty.

Aeon’s comparison of care home and live-in complex care includes questions about environment and staffing. Neither setting removes the need for an individual plan and skilled communication.

• Use simple, familiar and unhurried communication.
• Check sensory, privacy and environment factors.
• Pause rather than force care when distress rises.

Step 6: Plan Safety, Boundaries and Escalation

Everyone needs to know the routine, urgent and emergency response. The plan should identify what can be tried within the agreed support, when a family member or manager is contacted, when clinical advice is needed, when safeguarding procedures apply and when to call 999.

Avoid unplanned physical restriction, locked doors, surveillance, sedating medicine or confrontation simply because the situation feels hard. These actions can carry safety, legal, ethical and safeguarding implications and require the appropriate assessment, authority and person-specific plan.

If there is an immediate risk to the person or someone else, prioritise safety, use the emergency route and give professionals clear factual information. Do not ask a lone family member or worker to manage violence, serious clinical deterioration or a high-risk situation beyond their training and plan.

Aeon’s article on signs a loved one may need live-in complex care can help families organise observations about changing support needs. It is not an individual recommendation or risk assessment.

• Separate routine, urgent and emergency routes.
• Do not introduce restrictive practices without authority.
• Keep lone workers and family members within safe limits.

Step 7: Review the Plan With the Person and Carers

Review distressed behaviour support after new episodes, a change in health, a fall, hospital attendance, new medicine, a change of worker, a move, repeated family exhaustion or a clear change in the person’s wishes. Ask what the person experienced, not only whether an incident stopped quickly.

Family carers need support too. Repeated worry, disrupted sleep and fear of the next episode can affect health and relationships. A provider review, clinical review, carer’s assessment or planned respite may each be relevant, but they have different purposes and routes.

Use evidence from concise records, the person’s own account where possible, family experience, staff observations and current professional advice. Success includes comfort, dignity, participation, relationships and safety—not simply making behaviour less visible.

Aeon’s respite complex care at home guide includes questions about family breaks and continuity. Respite needs assessment, funding and provider capability must be confirmed in the individual situation.

• Review after meaningful changes, not only on a fixed date.
• Include the person’s and carer’s experience.
• Measure dignity and wellbeing as well as incidents.

Frequently Asked Questions

Is distressed behaviour in dementia deliberate?

It should not be assumed to be deliberate. A person may be communicating distress, discomfort, fear, confusion or another unmet need. New or sudden change can also indicate a health problem and needs the appropriate assessment.

Can a family write a behaviour support plan alone?

Families can record valuable observations and preferences, but clinical, medication, capacity, safeguarding and restrictive-practice decisions need the appropriate professional process. Agree who owns and reviews the complete plan.

Should a person be restrained if they try to leave?

Do not make that decision from a general article. Restrictive measures carry significant safety, legal and ethical implications. Prioritise immediate safety, follow the current plan and seek appropriate professional or emergency help.

When should I seek urgent help?

Use the person’s current clinical or provider plan for urgent concerns. Call 999 if someone appears to have a life-threatening emergency or is in immediate danger. New sudden change should be discussed with the appropriate professional promptly.

Talk Through the Options

Bring a short, factual observation record to the next relevant conversation. It can help the person, family, provider and professionals discuss what happens before, during and after distress, what supports comfort, what needs assessment and who owns each next step.

Aeon Nursing can discuss whether a commissioned home-care package may be relevant after individual assessment. For a no-obligation conversation, contact info@aeonnursing.co.uk. Diagnosis, medication, safeguarding, capacity and clinical decisions remain with the appropriate professionals and organisations.

Planning a Sustainable Arrangement

Ask the person how they prefer to be approached, reassured and supported. Their usual language, name, privacy, family relationships, life history and routines can all matter when care feels unfamiliar or stressful.

Keep observations factual and time limited. Note what happened and what helped, then share only the information needed for safe coordination through agreed, secure routes.

Check basic comfort before escalating an ordinary episode, while still taking new or severe change seriously. A quiet room, a pause, a drink or a familiar activity may be helpful, but none proves the cause.

Review the timing of personal care, visits, meals, activity and rest. Predictability can help, but flexibility is needed if the person is tired, uncomfortable, confused or asking for time.

Confirm who may give clinical advice and how to contact them. Do not ask a provider or family member to diagnose pain, infection, medicine effects, delirium or another health problem from observation alone.

Explain the current plan to new staff before a shift starts. Include communication preferences, known triggers, safe approaches, prohibited actions, contact routes and how the person can raise a concern.

Plan for noise, lighting, temperature, privacy, familiar objects and activity. Change one thing at a time where possible so the family can understand whether it helps or creates another difficulty.

Agree how the person can step away from a task or interaction. A pause can protect dignity and reduce conflict, but providers still need to complete essential care safely through the appropriate plan.

Discuss family breaks before exhaustion becomes a safeguarding or health issue. A sustainable arrangement acknowledges sleep, work, other caring roles, relationships and the family member’s own wellbeing.

Review complaints, safeguarding and incident routes with every worker. The person and family should know whom to contact if communication, dignity, safety or boundaries do not feel right.

Keep emergency information accessible but private: current contacts, known health information, access details and any approved escalation instructions. Do not use a generic article as the emergency plan.

Ask for review when the pattern changes, the person becomes more distressed, support no longer fits or staff and family are relying on workarounds rather than a current agreed plan.

Before a new episode, agree the words everyone will use for distressed behaviour. Consistent, non-blaming language makes records easier to compare and helps the person remain the focus of the discussion rather than becoming a label.

Ask whether the person has a preferred way to signal discomfort, fear or a need for space. A communication aid, gesture, object, familiar phrase or agreed pause may help, but it should be recorded in the current person-specific plan.

Consider whether distressed behaviour is more likely at transitions, such as waking, personal care, meals, visitors, medication time or bedtime. Share observations with the relevant professional rather than drawing clinical conclusions from a pattern alone.

Check that everyone understands the difference between reassurance and persuasion. Repeating an instruction, arguing about a memory or rushing a task can increase distress even when the intention is kind and the task is important.

Plan who will stay calm, who will make contact and who will step back if distressed behaviour escalates. A clear role avoids several people giving conflicting messages or a lone worker being left beyond the safe limits of their plan.

Use the NHS information on care and support plans to help frame questions about outcomes, coordination and review. Local processes and professional advice determine the individual plan.

Review whether relatives, advocates and regular staff receive information in the way the person has agreed. Respecting confidentiality matters alongside safe coordination, especially where family relationships or communication needs are complex.

Make room for positive observations as well as incidents. Note activities, people, timing and environments that help the person feel settled, connected or in control so distressed behaviour support is not only about reacting to difficult moments.

If a change has occurred after a move, discharge, bereavement or altered routine, ask for a timely review. Familiar strategies may need adapting, but changes should be agreed through the right clinical, provider or safeguarding route.

Ensure that the current plan is available to the people who are authorised to use it and removed or updated when it changes. Old versions can lead to inconsistent responses to distressed behaviour and confusion about who should be contacted.

Talk openly about the impact on family carers. Distressed behaviour can affect sleep, confidence, work and relationships; seeking a review or a break is a sensible part of sustaining care, not a failure of commitment.

After any serious incident, record factual information promptly and use the established reporting route. The aim is to learn what needs support or assessment, not to apportion blame to the person, family or worker.

Keep emergency numbers and access information current while protecting privacy. In immediate danger or a life-threatening emergency, call 999; otherwise use the agreed clinical, provider or safeguarding route for the person.

Ask whether distressed behaviour changes when familiar people, routines or environments change, and share those observations through the agreed review route.

A distressed behaviour record should state what helped without implying that a short-term response has diagnosed or solved the underlying cause.

If distressed behaviour occurs during a necessary task, review timing and communication before assuming the person is refusing care or being difficult.

The distressed behaviour plan should say who can update it, how staff are told about changes and when the relevant professional must be contacted.

Agree what a respectful pause looks like when distressed behaviour rises, including how essential care will be revisited safely rather than forced.

Include the person’s preferred calming activities in distressed behaviour planning, while still reporting sudden or concerning changes for appropriate assessment.

Review whether distressed behaviour records contain unnecessary private detail; factual, proportionate notes are usually more useful for safe coordination.

A distressed behaviour conversation can include what is going well, so the care plan protects familiar pleasures, relationships and participation.

When distressed behaviour affects several carers, agree one communication route so the person is not repeatedly questioned or given conflicting reassurance.

Use an agreed escalation route if distressed behaviour creates immediate risk, and do not expect family or staff to manage beyond their plan or training.

Check that temporary changes made after distressed behaviour are reviewed promptly and do not become an unexamined restriction or loss of choice.

Bring questions about distressed behaviour to the next professional review, including changes in health, pain cues, sleep, appetite, mobility or communication.

Important Information

This article provides general information and does not replace medical, nursing, dementia, mental-health, safeguarding, social-care, legal, capacity, medication, care-provider or emergency advice. Any support plan must reflect the person’s individual circumstances, current professional advice and wishes.

Call 999 if someone appears to have a life-threatening emergency or is in immediate danger. For other urgent concerns, use the current clinical, provider or safeguarding route and seek professional assessment rather than relying on general information online.

About the Author

Content Writer: Dr Naeem Aslam