It is nearly four o’clock. Margaret is standing by the front door of the lounge, coat half on, asking again where her mother is. A staff member walks past with a medication trolley. Another resident calls out from the corridor. The television is on, quite loud, and the light is beginning to shift in that particular late-afternoon way. Margaret’s voice rises. Someone reaches for the notes to write another entry about her being unsettled.
Moments like this happen every day in dementia care, at home and in care homes, on domiciliary visits and in hospital wards. They are often described as behaviour, or agitation, or something to be managed. But what if we started somewhere different. What if we treated that moment at the door as a piece of communication, not a problem to solve, and asked what Margaret might be telling us.
This article looks at stress and distress in dementia through a relational lens. It draws on the CALM Approach and the six CALM principles, and it is written for care home teams, dementia leads, community nurses and, importantly, family carers who are holding a great deal at home. There is no quick fix here, and no implicit criticism of anyone who has ever felt they got it wrong. There is only an invitation to slow down and see the person.
Rethinking stress and distressed behaviour in dementia
For a long time, the language around dementia care has been the language of behaviour. Care plans list behaviours. Incident forms record them. Whole shifts are spent trying to prevent, redirect or de-escalate them. It is understandable. When someone is shouting, or hitting out, or refusing personal care, staff need something to do.
The trouble is that the word behaviour, on its own, tells us almost nothing. It describes what we can see from the outside. It does not tell us what the person is experiencing on the inside. And in dementia care, where words often become harder to find, the inside is where almost all the useful information lives.
A different starting point changes everything. Instead of asking how do we manage this behaviour, we ask what might this person be trying to tell us, and what might they need. That shift, from managing to understanding, is at the heart of the CALM Approach applied to dementia.
From “behaviour management” to “understanding need”
Behaviour management implies a person to be controlled and a professional who knows best. It puts the staff member in charge of the outcome and the person living with dementia in the position of a problem. Even when it is done kindly, the framing shapes the encounter.
Understanding need starts somewhere else. It assumes the person is doing the best they can with the resources available to them in that moment. It treats stress and distress as a signal that something is unmet, uncomfortable, frightening or confusing. The task is not to stop the signal, it is to work out what it points to.
This is not a soft alternative to good care. It is more demanding, not less. It asks staff to stay curious under pressure, and it asks organisations to build the conditions in which that curiosity is possible.
The person is still there
One of the most damaging assumptions in dementia care is that the person has gone. Language slips in easily: she’s not really there anymore, he doesn’t know what’s happening, there’s nothing of him left. It is often said with sadness, not cruelty. But it changes how we speak, how we touch, how we enter a room.
The person is still there. Their history is still there. Their preferences, their humour, their sensitivities, their strong feelings about being spoken over or rushed. What has changed is how they experience and communicate the world, not whether they are in it.
When we hold on to that, our practice changes. We knock before we enter. We use their name. We assume they can hear us and take in more than we might realise. We speak to them, not about them across the top of their head.
What stress and distress might be communicating
If stress and distress is communication, the next question is practical. What might it be communicating. In dementia care the answer is rarely one thing, and it is almost never simply the dementia itself. It is usually a combination of body, environment, feeling and history all pressing in at once.
Getting curious about the specific mix takes time. It is easier in a well-staffed team with a strong culture of noticing. It is harder on a rushed morning shift or on a long solo visit. But even a small pause, even one honest question, opens a door that no medication can open.
Physical needs and discomfort
So much of what gets called agitation is a body in discomfort. Pain that cannot be named. A full bladder that has been ignored for two hours because the call bell is out of reach. Thirst on a warm day. Being too hot in a cardigan that no one has thought to take off. Constipation. A urinary infection that has not yet been picked up.
The person who becomes agitated every day at four o’clock may be tired, hungry, needing the toilet, in pain that peaks at the end of the day, or looking for the children to return from school and expecting to make them a snack. The resident who resists personal care at the bathroom doorway may be cold, frightened of the tiled floor, or in pain when their shoulder is moved a particular way.
None of this is guesswork forever. Careful observation, gentle enquiry and good handovers turn hunches into knowledge. A simple pain assessment, a warm drink, a hand on a shoulder to check for tension: these small acts often do more than any behavioural chart.
Sensory experience and environment
The environment is not a backdrop. It is part of what the person is experiencing every second. Fluorescent lights, patterned carpets, echoing corridors, the television competing with the radio, the smell of disinfectant, a new face at the door: all of it lands in a nervous system that is working hard to make sense of what is happening.
Distress at bath time is often environmental. The bathroom is loud, cold, brightly lit and full of hard surfaces. The bath itself may look nothing like the one at home. When we imagine stepping into that room ourselves, half undressed, feeling the shame of being exposed in front of someone who is effectively a stranger to us, it becomes less mysterious.
Softening the environment is one of the most powerful interventions available. Lower lights where you can. Reduce competing noise. Warm the space before care begins. Cover shiny surfaces that reflect confusingly. Small changes here often prevent the very moments that would otherwise be logged as incidents.
Emotional and relational needs
People living with dementia feel everything the rest of us feel. Loneliness. Fear. Missing someone. Wanting to be useful. Wanting to go home, whatever home means to them today. These feelings do not disappear because the words for them are harder to reach.
When someone calls out repeatedly for their mother, they are almost never asking a factual question. They are reaching for safety, for the person who once made the world make sense. Correcting them with the truth (“your mother died many years ago”) is often experienced as fresh bereavement, again and again.
The relational response is different. Sit down. Meet their eyes. Ask about their mother. Follow the feeling. What was she like. What did she cook. Where did you feel safest as a child. The feeling gets to be met, and the person is not left alone with it.
The environment matters enormously here, and staff themselves are one of the biggest factors in whether stress and distress builds or eases. How much time we have, how present we can be, the relationships we have built, the skills we can draw on, all shape how a person experiences the space around them.
The influence of life history
Who this person was, and is, shapes how they experience the present. A man who spent forty years as a night-shift engineer may become restless in the evening because that is when his body expects to be up and working. A woman who raised four children may pace the corridor at teatime looking for people who need feeding.
Life story work matters here, and it matters more than a laminated one-pager on the wall. It means the team knows that Jean does not like being touched on her left side because of an old injury. That Peter’s wife always called him Pete, and Peter feels distant. That George survived difficult experiences in his early life that make sudden noises unbearable.
This kind of knowing is trauma responsive in the truest sense. It recognises that the past shapes the present, and that safety in the present depends on how well we hold the past.
“How we respond to stress and distress can either reduce harm or escalate it. Compassionate, consistent responses allow people to feel cared for, safe, and connected.”
CALM Principle: Trauma Responsive
The role of the relationship
In dementia care, relationship is not the wrapping around the intervention. Relationship is the intervention. The person may not remember your name by tomorrow, and it does not matter. What they remember is the feeling of you: safe or unsafe, gentle or rushed, with them or above them.
This is where the CALM principle of Relationship Promoting does the heavy lifting. Connection comes before correction. Before we ask someone to be washed, dressed, moved, medicated or redirected, we make contact. A moment of eye contact. A hand on a hand. A slow hello.
Presence over technique
There is a strong pull, when things get hard, to reach for a technique. A phrase to try. A distraction. A step-by-step response. Techniques have their place, but they cannot substitute for presence. A worried person can feel a rushed carer even through the kindest words.
Presence is quieter than technique. It looks like sitting down rather than standing over. Slowing your breath before you speak. Letting there be a pause. Not filling every silence with reassurance. Being willing to just be with the person for a minute, without needing them to be different.
Staff who have been in the sector for a long time often describe this as the thing no course taught them, that they learned only by staying with people. Good training can name it and support it, but it takes root through practice.
Voice, tone and pace
The voice we use in a difficult moment is one of the most powerful tools we have. A slower pace. A softer volume. A lower pitch. Fewer words. These are small adjustments that most people can make once they have noticed themselves speeding up.
Bright, high-energy voices, the kind used to encourage children, often land badly with older adults, particularly when the person feels lost or exposed. Speaking to an adult as an adult, even when they can no longer answer in full sentences, is a mark of respect.
The pace of movement matters too. Approaching from the front, not the side. Announcing yourself before you touch. Giving the person time to look up, register your face, and take you in. These small courtesies are the daily practice of the Rights Respecting principle.
Repair after a difficult moment
Sometimes, despite everyone’s best efforts, a moment goes badly. Voices are raised. Someone is hurt. A resident is left frightened, a staff member shaken, a family member watching in the doorway not sure what to do.
The Recovery stage of CALM’s public health model matters here. It is the piece that is most often skipped, and the piece that carries the most long-term weight. Recovery is not about closing the incident, it is about repairing the relationship.
Sit with the person afterwards. Not to explain what happened. Just to be present again, quietly. Bring them a drink. Notice their hand shaking. Say sorry that things felt hard. A team that practises this kind of repair, again and again, builds a culture that people can trust.
Supporting family carers
Family carers are often the least supported people in the whole system. They are also, very often, the most exhausted. If that is you reading this, we want to start by saying: the fact that you are still trying is remarkable. Nothing in what follows is a criticism of anything you have done so far.
Caring for a relative with dementia is unlike almost any other role. You are partner, parent, nurse, cook, memory-keeper and advocate, often on a few hours of broken sleep. It is not surprising that some days end in tears, or in a raised voice you did not know you had. That does not make you a bad carer. It makes you a person.
The specific weight family carers hold
The weight is emotional as well as practical. You are watching someone you love change in ways you did not choose. You are grieving a person who is still here. You may be answering the same question fifty times a day, holding your temper, and being told by well-meaning friends that you should look after yourself.
Self-care matters, and things like a walk, a proper cup of tea in peace, or a phone call with a friend all have their place. And while these have their place, real support usually needs to go deeper than that: honest conversations, practical help, respite, and being believed when you say it is hard.
Being able to name stress and distress in your relative as communication, rather than as their fault or yours, can lift a small part of that weight. It gives you something to be curious about together, rather than something to be defeated by.
How care teams can partner without judgement
Care teams have an important role in how family carers experience the whole journey. A relative walking into a care home for the first time is often carrying guilt as heavy as their handbag. The way they are greeted, listened to and included matters enormously.
Good practice looks like asking family carers what they know about the person, and treating that knowledge as expertise. It looks like keeping them in the loop about small changes. It looks like not talking about their relative in front of them as if they were a case. It looks like offering them a chair and a drink.
CALM’s Dementia: Understanding Needs and Reducing Distress course is designed for care staff and family carers together, because the relational approach is the same on both sides of the front door.
What good dementia care culture looks like
None of this is possible in isolation. A member of staff who has been trained in relational practice, but is working in a rushed, thinly staffed environment with little support, will struggle to sustain it. The CALM principle of Systems Thinker applies here as much as anywhere.
Culture is what makes relational practice possible day after day. It is set by leaders, held by teams, and felt by residents and families in ways they may never articulate but always sense.
The role of the whole team
Dementia care is not just the job of the carer at the bedside. It involves cleaners who know a resident’s favourite chair, cooks who remember that Mrs Ali likes her tea very sweet, activity coordinators who notice who has not spoken all day, and managers who make sure staff are not running on empty.
When the whole team is oriented around understanding need, small pieces of information travel. The cleaner mentions that Margaret was pacing at four o’clock again. The kitchen sends up a milky drink. The senior carer sits down with her for five minutes and gently asks about her mum. The four-o’clock moment softens.
This is the Relationship Promoting principle at an organisational level. Good relationships between staff, and between staff and leaders, are the foundation on which good relationships with residents are built.
Learning from the hardest moments
The hardest moments hold the most learning. A resident who was stressed and distressed for three days running. A shift that ended with someone in tears. A family visit that went badly. These deserve more than an incident form.
CALM’s Debrief course is built around this idea. Debrief is a structured way for teams to slow down after difficult moments and ask what happened, what we noticed, what the person might have been telling us, and what we would do differently next time.
This is the Always Learning principle in daily practice. Learning does not only come from courses. It comes from teams that take their own experience seriously, and treat their reflections as evidence worth acting on.
How CALM supports dementia care teams
CALM has spent nearly three decades supporting organisations to move from control and compliance towards understanding and connection. In dementia care, that shift is not a slogan. It changes how a shift feels, how a resident settles, and how a family walks back to the car park.
Our Dementia: Understanding Needs and Reducing Distress course is a two-day programme for care staff and family carers, rooted in the CALM Approach and shaped around real life in care homes, at home and in community settings. For a shorter targeted session, the same thinking is offered through our Dementia Enhanced Practice work, available through the same dementia course page.
For teams who want to build the wider foundation, the CALM Core Theory Online course and the CALM Trauma Course with Lorna Walker offer the underpinning theory that shapes CALM’s approach to stress and distress in any setting. The Debrief course supports teams to learn from the hardest moments, and the Trauma Responsive Insights webinar series offers ongoing reflective learning. If you would like to talk about what might suit your team, we would be glad to listen.
Frequently Asked Questions
Why do people with dementia become stressed and distressed?
Distress in dementia is almost always a form of communication. It may point to pain, thirst, needing the toilet, feeling too hot or cold, feeling overwhelmed by noise or unfamiliar surroundings, missing someone, or reaching for a memory of safety. The task is to become curious about what the person may be experiencing, rather than to manage the outward behaviour.
What causes behaviour that challenges in dementia?
It is rarely one cause. Physical discomfort, sensory overwhelm, emotional loneliness and unmet relational needs often layer on top of each other. Life history matters too, as past experiences shape how the present is felt. Our Dementia: Understanding Needs and Reducing Distress course explores this in depth.
How do you calm someone with dementia who is upset?
Slow down before you speak. Approach from the front, use their name, meet their eyes, and lower your voice. Follow the feeling rather than correcting the facts, and check for practical needs like pain, thirst or needing the toilet. Presence and pace usually do more than any single technique.
What is trauma-informed or trauma-responsive dementia care?
It means recognising that a person’s past experiences shape how they feel safe in the present, and that stress and distress in dementia is often connected to that longer history. It also means building environments and relationships that reduce further harm. The CALM Trauma Course explores this thinking in depth.
How can family carers support a relative who is stressed and distressed?
Start by trusting your knowledge of the person you love. Look for practical needs first, then for what the feeling might be pointing to, and give yourself permission to slow down. You are not expected to get it right every time. Being present, warm and honest is worth more than any perfect response.
Is stress and distress a normal part of dementia?
Distress is common, but it is not a fixed feature of dementia. It is a signal that something in the person’s body, environment, feelings or history needs attention. When those things are addressed, stress and distress often reduces, even where the underlying dementia is progressing.
How can care home teams reduce stress and distress across a service?
Culture is the biggest lever. That means unhurried care, strong life story work, gentle environments, and consistent staff who know the people they support. It also means teams that pause together after hard moments, which is what CALM’s Debrief course is designed to support.
What are the root causes of stress and distress in dementia?
Root causes are usually a mix of unmet physical needs, sensory experience, emotional and relational needs, and life history. Pain, discomfort, thirst, needing the toilet, feeling overwhelmed by noise or lighting, missing someone, or being spoken to in a way that feels unsafe are common. Understanding root causes is the starting point for reducing stress and distress, not managing it.
How do we minimise risk and uphold duty of care in dementia?
Reducing stress and distress is itself a duty-of-care activity. It means noticing patterns, adjusting environments, supporting staff to respond well, and learning from the hardest moments through structured Debrief. Risk minimisation is not about restriction, it is about understanding need and getting there earlier.
How does staff wellbeing support reduced stress and distress?
Staff are one of the biggest factors in whether stress and distress builds or eases in dementia care. Teams that are exhausted, rushed and unsupported cannot offer the presence, patience and skill this work asks for. Investing in staff wellbeing is investing directly in the wellbeing of the people they support.