Why Dementia Behaviour Is Communication: A Guide for Carers
Behaviour in dementia is rarely random. It’s communication. This guide helps family carers understand what expressions of need really mean and how to respond with confidence at home.
When someone we love is living with dementia, there are moments that stop us in our tracks. A father who was always so gentle becomes distressed when you try to help him wash. A mother who slept soundly for 80 years starts pacing the hallway at 2am. A husband who was endlessly patient now shouts, repeats the same question for the hundredth time, or refuses to leave the living room.
If you’re caring for someone at home, these moments can feel bewildering, exhausting, and sometimes frightening. But here’s something that genuinely changes the way you experience them: none of these behaviours are random. They’re not your loved one being difficult, and they’re not a sign that you’re doing something wrong.
They’re expressions of need. They’re the best attempt a person with dementia has to tell you something important, when the words simply aren’t available to them any more.
This guide is for the family carers who are doing the hardest job there is, often without formal training, often without enough sleep, and always with more love than they’re probably giving themselves credit for. We want to help you understand what these expressions of need really mean, how to read them more confidently, and what to do in those difficult moments at home. If you’re earlier in the journey and looking for signs to watch for, our guide to recognising early signs of dementia may be a helpful place to start.
What do we mean by ‘expressions of need’ in dementia?
The term you’ll most often see used is ‘challenging behaviour.’ It’s become the standard phrase in care, and it does capture something real: these situations are genuinely challenging for the people responding to them. But there’s a growing body of research that questions whether this framing serves the person with dementia.
A 2024 study published in Frontiers in Psychiatry examined how professional carers interpret difficult behaviour in people with dementia. It found that when carers approached behaviour as a symptom of distress or unmet need rather than deliberate disruption, they were far more likely to respond in ways that actually helped.
The Alzheimer’s Society puts it plainly: ‘The behaviour will often have meaning for the person with dementia.’ The behaviour is usually the best way they can communicate what they want, or help themselves feel better.
Thinking about ‘expressions of need’ rather than ‘challenging behaviour’ isn’t just a linguistic nicety. It changes how you approach the moment. Instead of asking ‘How do I stop this?’ you ask ‘What is my loved one trying to tell me?’ That shift opens up a completely different set of responses.
Why does dementia lead to these kinds of expressions?
As dementia progresses, the parts of the brain that manage language, memory, reasoning, and emotional regulation are progressively affected. A person who has always been articulate can find themselves unable to retrieve the word for ‘thirsty,’ or unable to hold in mind the thought ‘I feel anxious’ long enough to say it. They may not be able to tell you they’re in pain, or that they feel confused, or that they heard something outside that frightened them. If you’d like to understand how different forms of dementia affect the brain, our guides to types of dementia explained and the 7 stages of dementia go into more detail.
What they can do is act. They can pace, call out, resist, reach, cry, or withdraw. These actions are often the only communication channel left to them.
Dementia UK’s Admiral Nurses describe distress as occurring when a person is suffering emotionally or physically and struggling to cope, reacting in ways that aren’t typical of their usual behaviour. That reaction is real. The feeling behind it is real. It just doesn’t come with the verbal label we’d normally expect.
There’s also something important to understand about emotional memory. People with dementia may not remember what happened an hour ago, but emotional memory is often preserved much longer. Your loved one may not recall the argument you had at breakfast, but they may carry the feeling of it for hours. As the Family Caregiver Alliance puts it: ‘Always strive to listen for the meaning and feelings that underlie the words.’
Common expressions of need you might see at home
Restlessness and pacing
Pacing, wandering around the house, or an inability to settle is one of the most common expressions of need in dementia. It might mean your loved one is bored, under-stimulated, or in need of some physical movement. It could also signal anxiety, discomfort, or a physical need they can’t name: needing the toilet, being too warm, or feeling hungry.
Building regular movement into the day, ensuring they’ve had enough to eat and drink, and giving them something purposeful to do with their hands can all make a difference. Predictable daily structure helps enormously.
Repetitive questions and actions
If your loved one asks the same question again and again, it’s not wilful. It’s almost always a sign of anxiety or insecurity about something. There may be an underlying theme if you listen carefully: Are they worried about an appointment? Concerned someone is coming? Trying to locate something important to them?
Try to respond to the feeling behind the question rather than just the literal words. Offering reassurance, a visible clock, or a simple note on the kitchen table can sometimes break the loop more effectively than repeated verbal answers.
Resisting personal care
Helping someone you love to wash, dress, or manage continence is one of the most intimate and emotionally complex parts of home caring. When your loved one resists, it’s easy to feel hurt or defeated. But being undressed and cleaned by another person can feel frightening, humiliating, and disorienting, especially when you’re not fully sure who that person is or what’s happening.
Think about their history: did they prefer baths or showers? Mornings or evenings? Were there particular routines or scents they loved? Adopting familiar elements, explaining each step beforehand, moving slowly, and giving them as much control as possible can significantly reduce resistance.
Distress, shouting, and calling out
Shouting, crying, using distressing language, or calling for someone can be alarming to witness. These are signs that the person is in real emotional or physical discomfort and needs connection and reassurance. They might be in pain. They might be frightened. They might be processing a memory or experiencing an emotion they can’t place.
A calm, soft voice, gentle touch if welcome, and simply being present rather than trying to ‘fix’ the situation are often the most effective responses. Avoid arguing or trying to correct what they’re saying. Acknowledge the feeling instead: ‘I can see you’re upset. I’m right here. You’re safe.’
Shadowing and following
If your loved one follows you from room to room, seems unable to let you out of sight, or becomes very anxious when you’re not nearby, this is almost always an expression of insecurity and a need for connection. This ‘shadowing’ often increases later in the day as fatigue builds.
Rather than trying to separate yourself, try involving them in what you’re doing. If you’re cooking or folding laundry, have them close by. The companionship itself is what they’re asking for.
Sundowning
Many families describe their loved one being more settled in the mornings but becoming increasingly confused, anxious, or distressed as afternoon and evening arrive. This pattern, called sundowning, is well documented and widely experienced by home carers.
Dementia UK explains that sundowning may be linked to fatigue accumulated during the day, changes in the person’s internal body clock, or memories that surface at times they associate with specific roles. Planning quieter, structured activities in the afternoon, ensuring good lighting before dusk, and creating a consistent wind-down routine can all help. We cover sundowning in much more depth in our dedicated guide: understanding and managing sundowning.
Hiding and hoarding objects
Finding objects hidden in unusual places, or noticing that your loved one is collecting and storing things, can feel puzzling. Often this is an expression of a need to feel in control or to keep important things ‘safe’ when the world feels unpredictable. It’s rarely cause for concern, though learning their favourite hiding spots can save considerable searching time.
How to read an expression of need: the detective approach
When a pattern of behaviour is difficult, it helps to think like a detective. Rather than simply reacting in the moment, try to step back and look at the circumstances around it. Gathering the facts, assessing the information, evaluating the evidence, and then planning your response is a method recommended by dementia care specialists.
Some useful questions to ask yourself:
When does this happen? Is there a time of day, a particular activity, or a specific person involved? Does it tend to follow a disruption to routine or a change in environment?
What happened just before? Did a noise occur, did someone arrive, did you ask them to do something? Even something as small as a change in lighting or an unfamiliar smell can be a trigger.
What might they be feeling? Try to step into their world. Are they tired, bored, in pain, frightened, or overstimulated? Are they reacting to something in their environment that doesn’t feel right to them?
Keeping a simple diary for a week or two can reveal patterns that aren’t obvious in the moment. The Alzheimer’s Society recommends this specifically, and it can transform how you respond because you’re no longer reacting to isolated incidents. You’re working from evidence.
Always rule out a physical cause first
One of the most important things to know about sudden changes in behaviour is this: they can very often signal a physical health problem, not a progression in dementia.
Urinary tract infections are a particularly common culprit. They can cause rapid, severe changes in behaviour in older people, including increased agitation, confusion, and distress. Constipation, uncontrolled pain, dehydration, and medication side effects can all do the same.
The Alzheimer’s Society is clear on this: if behaviour changes suddenly, contact the GP. Don’t assume it’s just the dementia. Ask the doctor to check for physical problems and to review all current medication, including anything bought over the counter.
This matters especially at home, where there isn’t a medical team around to spot these things. You are your loved one’s first line of observation, and noticing a sudden shift in their usual baseline is genuinely important clinical information.
Practical strategies for the difficult moments
There’s no single script that works every time, and what helps beautifully one day may not work at all the next. The disease changes, moods change, and the context changes. What you’re building isn’t a fixed toolkit: it’s a flexible way of thinking.
Stay calm. Your emotional state communicates more powerfully than your words. If you’re frustrated or frightened, your loved one will feel it, even when they can’t interpret it. Taking a breath before you respond isn’t a luxury; it’s effective care.
Don’t correct or argue. If your loved one believes they need to collect the children from school, arguing that the children are adults won’t help. Acknowledge the feeling of urgency, redirect gently, and move the conversation toward something they can engage with.
Validate before you redirect. Acknowledge what they’re feeling before changing the subject or introducing a distraction. ‘I can see you’re worried. Let’s have a cup of tea and think about it together’ is far more effective than immediate redirection with no acknowledgement.
Use touch carefully and warmly. Gentle touch, holding a hand, or simply sitting close can communicate safety and connection when words don’t reach. Be guided by the person; not everyone finds physical comfort helpful in distress.
Lean on music and memory. Music from a person’s past can reach parts of the brain that verbal language no longer accesses easily. Familiar songs, favourite artists, or music from a significant period of their life can be genuinely calming.
Create calm in the environment. Reducing noise, softening lighting, and removing visual clutter can lower sensory stimulation significantly. Sometimes what looks like agitation is actually overload. Our guide to creating a dementia-friendly home environment goes much further on this.
Looking after yourself as a family carer
We’d be doing you a disservice if we didn’t say this plainly: caring for someone with dementia at home, through the expressions of need that come with it, is one of the most demanding things a human being can do. It asks everything of you, often invisibly and often without recognition.
Your ability to respond calmly and with warmth is directly connected to how you’re doing yourself. This isn’t a platitude: it’s something every carer support organisation will tell you because it’s true.
If you’re finding that particular expressions of need are consistently overwhelming, that’s important information. It might mean you need more support at home, a break through respite care, or specialist guidance. Dementia UK’s Admiral Nurse Helpline (0800 888 6678) is free, staffed by specialist dementia nurses, and available every day of the year except Christmas Day.
You don’t have to understand everything perfectly. You don’t have to get it right every time. The fact that you’re here, reading this, trying to understand what your loved one is expressing, says everything about who you are to them.
When home caring starts to feel like more than you can manage
Sometimes the most loving thing you can do is recognise when the level of support your loved one needs has grown beyond what’s possible at home. That’s not a failure. It’s a reckoning with reality, and it takes real courage.
If you’re starting to ask those questions, we’d gently encourage you to explore what’s available. Respite care can give you a proper rest while your loved one is cared for by people who understand dementia deeply. And for families considering a longer-term move, specialist dementia care in a small, intimate setting can offer a quality of life that often surprises people. Our practical guide to caring for someone with dementia at home covers many of the day-to-day questions families face along the way.
At The Care Labs, we share everything we know to help families navigate this journey on their own terms. If you’d like to read more, explore our full library of dementia care guides.
Frequently asked questions
What is an expression of need in dementia?
An expression of need is a behaviour that communicates something a person with dementia can’t express in words. As dementia progresses, verbal communication becomes harder, and behaviours like pacing, calling out, resisting care, or becoming distressed become the main way a person can signal what they’re feeling or what they need. The behaviour is meaningful, even when it’s hard to interpret.
Is ‘challenging behaviour’ the same as an expression of need?
Both terms refer to the same behaviours. The difference is in framing. ‘Challenging behaviour’ describes how these situations feel from the carer’s perspective. ‘Expressions of need’ describes what’s actually happening from the person with dementia’s perspective. The framing matters because when you understand that a behaviour is communicating a need, you’re better placed to find a response that helps rather than one that simply manages the surface.
What are the most common expressions of need at home?
Common expressions of need at home include restlessness and pacing, repetitive questions, resistance to personal care like washing and dressing, distress and calling out, shadowing or following carers closely, sundowning in the late afternoon or evening, and hiding or hoarding objects. Each of these is trying to communicate something specific.
What should I do when my loved one becomes distressed at home?
Stay calm and approach them quietly. Acknowledge how they’re feeling before anything else. Use a soft voice, maintain gentle eye contact, and try to identify what might have triggered the distress. Don’t argue or try to correct them. If music, a familiar object, or a favourite activity helps them, introduce it gently. If the distress is severe or out of character, contact their GP to rule out a physical cause such as an infection or pain.
When should I contact a GP about a behaviour change?
Any sudden or significant change in behaviour should prompt a GP visit. Changes that come on quickly rather than gradually are often caused by physical problems such as urinary tract infections, constipation, pain, dehydration, or medication side effects. Always check the physical picture first before assuming a change is simply progression of the dementia.
Can medication help with distress caused by expressions of need?
Medication, including antipsychotics, can sometimes be used when all other approaches have been tried and the person remains in significant distress. However, the Alzheimer’s Society and Dementia UK are clear that antipsychotics carry serious risks for people with dementia and should only be prescribed by a specialist and used alongside non-medical approaches. Always discuss this carefully with the person’s GP or consultant.
What is sundowning and how do I manage it at home?
Sundowning refers to increased confusion, anxiety, or distress that often occurs in the late afternoon and evening in people with dementia. It may be linked to fatigue, changes in the body clock, or reduced light. Managing it at home can include keeping the afternoon calm and structured, ensuring good lighting before dusk, reducing stimulation in the evening, and maintaining a consistent bedtime routine.
How do I know when home caring is no longer sustainable?
There’s no single moment, but signs that you may need more support include consistently feeling unable to manage expressions of need safely, your own health deteriorating significantly, your loved one being frequently distressed despite your best efforts, or a growing sense that their needs have grown beyond what home care can meet. Reaching out to your GP, a social worker, or an Admiral Nurse is a good starting point. You’re not alone in this.
Sources
Alzheimer’s Society. ‘Reducing and managing behaviour that challenges.’
Alzheimer’s Society. ‘Understanding and supporting a person with dementia.’
Skills for Health. ‘Challenging behaviour in dementia: how to manage it.’ (2025).
Family Caregiver Alliance. ‘Caregiver’s Guide to Understanding Dementia Behaviors.’
‘Coping with dementia behaviour changes.’ (Last reviewed January 2024).
Dementia UK. ‘Managing distress in a person living with dementia.’ (Published July 2025).
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