Understanding Behaviour That Challenges
As dementia progresses, the ease of using spoken language gradually reduces. Sentences become harder to form, words are harder to find, and complex thoughts become more difficult to express. When this happens, behaviour naturally becomes a vital form of communication – not by choice, but because it may be the clearest way the person can share how they feel.
Behaviour that challenges can be confusing, unexpected, or a little alarming when it appears suddenly or does not seem to match the situation. Many carers describe moments where they are left wondering what has happened or how best to respond.
Yet in most cases, these behaviours have meaning. They are often attempts to communicate a feeling, a discomfort, or a need that the person can no longer express clearly through words. Understanding this shift helps carers respond with greater confidence and compassion. Instead of viewing the behaviour as the problem, we can explore what the behaviour might be trying to tell us.
Understanding Behaviour That Challenges as Communication
Across UK dementia guidance, there is a common understanding that when someone is living with dementia, changes in behaviour are often signs of distress or unmet need rather than deliberate actions. Behaviour that challenges may appear when the person is frightened, confused, overstimulated, in pain, or unable to express themselves clearly.
Skills for Care highlights that, in adult social care, distress-related behaviour is frequently a form of communication. It can be the only way a person is able to show that something does not feel right.
What Do We Mean by Unmet Needs?
An unmet need is something essential that has not yet been recognised or addressed. Dementia UK notes that distress may arise when someone is hungry, thirsty, in pain, uncomfortable, bored, lonely, frightened, or overwhelmed – but unable to explain what is wrong.
- Physical needs: pain, constipation, infection, hunger, thirst, temperature, needing the toilet.
- Emotional needs: fear, sadness, anxiety, embarrassment, loneliness.
- Social needs: companionship, inclusion, meaningful interaction.
- Cognitive needs: understanding, predictability, routine, clear information.
- Environmental needs: noise level, lighting, clutter, shadows, unfamiliar surroundings.
When these needs are not identified, behaviour that challenges may become the person’s way of signalling that something is wrong.
Emotional Logic and Factual Logic
Two different kinds of “logic” often appear in dementia care:
- Factual logic: the concrete details of a situation – time, place, people, and events.
- Emotional logic: how something feels to the person internally – safe or unsafe, calm or anxious, included or ignored.
As dementia progresses, factual logic becomes harder to hold onto. Emotional logic, however, remains powerful. When a person feels unsafe, distressed, or lonely, those feelings are real even if the surrounding facts do not align. Many confusing statements make sense when viewed through emotional logic.
“I Want to Go Home”: A Closer Look
“I want to go home” is one of the most common expressions of distress. According to Alzheimer’s Society, “home” may not refer to the person’s current address at all. It may reflect a memory of a time or place where they felt safe, settled, or in control – often a childhood home or a home they lived in during young adulthood.
“Home” may indicate a need for:
- safety and reassurance
- familiar routines
- comfort and belonging
- relief from boredom or inactivity
NHS guidance recommends responding by acknowledging the feeling, offering reassurance, and using reminiscence rather than correcting the factual details.
Case Study: “The Walk Home After Lunch”
Background:
“Mr T” lived in a care home and was known for being cheerful and sociable in the mornings. But each day, almost at the same time shortly after lunch, things would change. He became irritable, agitated, and determined to leave the building. Staff described it as purposeful elopement — heading firmly towards the exit, insisting he needed to “go home now”. These episodes often ended in distress and, on several occasions, soiling.
This pattern was upsetting for staff, residents, and for Mr T himself, who appeared overwhelmed and uncomfortable during each episode.
Scenario:
After several weeks of repeated incidents, a staff member noticed something important: the behaviour happened with almost clockwork precision. This consistency prompted conversations with his family, who shared a key piece of his personal history.
For his entire adult life, Mr T had a deeply ingrained routine — and a lifelong fear of public toilets. Before dementia, he would go out in the mornings, return home for lunch, and use his own bathroom every single day. He never broke this pattern.
Once staff understood this, everything clicked. His behaviour after lunch wasn’t “aggression” or “wandering”. It was his attempt to follow the routine that had brought him comfort, dignity, and privacy for decades.
Learning Point:
With this insight, the team changed their approach. Rather than waiting for the distress to escalate, they quietly introduced a gentle, respectful prompt at the right time each day. Staff would guide him towards the bathroom as they were “passing”, without drawing attention or embarrassing him in front of others.
This small adaptation protected his dignity, prevented his daily distress, and significantly reduced the strain on staff who had previously needed to manage the aftermath of soiling and heightened agitation.
Most importantly, Mr T no longer felt the overwhelming, unmet need that had been driving his behaviour. His afternoons became calmer, his confidence improved, and his sense of independence was preserved.
Why This Matters:
This case highlights how behaviour that challenges often makes perfect sense when seen through the lens of unmet needs and lifelong habits. Understanding personal routines — and the emotional logic behind them — can transform care, reduce distress, and restore dignity in moments that once felt chaotic.
Other Distress Phrases and What They May Communicate
Each person is unique. There is no fixed “dictionary”, but UK dementia resources highlight patterns that commonly appear in distress-related behaviour. The examples below offer possibilities, not rules. They aim to prompt curiosity about underlying needs.
“I hate you” / “Go away”
- overstimulation or overwhelm
- being rushed during personal care
- embarrassment or loss of privacy
- pain or discomfort
- tiredness or irritability
“I’m going to kill you”
Strong verbal threats can be alarming. UK dementia guidance describes these reactions as forms of intense distress or fear rather than intent. They may signal:
- panic or misinterpretation of a situation
- pain or severe discomfort
- fear during personal care tasks
- frustration when communication is difficult
While safety always comes first, understanding the fear behind the words helps shape a calmer response.
“You stole my things”
Accusations of theft are common in dementia. Alzheimer’s Society explains that delusions – strongly held false beliefs – often involve thinking that someone has taken money or possessions.
- memory gaps
- difficulties recognising familiar people
- fear of losing control
- confusion about where items are kept
“Help me” (repeated)
- anxiety or fear
- pain or discomfort
- loneliness
- uncertainty about what is happening
- boredom or need for meaningful activity
“Leave me alone”
- sensory overload
- needing rest
- low mood
- wanting space and quiet
“I need to go to work”
- purpose and identity
- structure and routine
- connection to past roles
- relief from boredom
Elopement and Wandering: When Walking Becomes Communication
Some people begin pacing, walking with purpose, or attempting to leave the home. Although often described as “wandering”, a more accurate description is elopement – leaving a safe space due to an unmet need or emotional drive.
- seeking safety when feeling unsettled
- trying to find familiar places or people
- responding to old routines, such as going to work
- looking for fresh air or movement
- trying to find “home” as part of emotional logic
Understanding the reason behind elopement helps carers plan routines and environments that provide comfort. It is also important to be prepared for situations where the person may leave unexpectedly.
The Herbert Protocol
The Herbert Protocol is a UK safeguarding tool designed to help police quickly locate a missing person living with dementia. Families complete a short form in advance and keep it at home. If the person goes missing, the form is handed to the police to support the search.
- recent photographs
- background and medical details
- regular walking routes
- places of significance
- contact information
The form can reduce panic and improve the chances of finding the person safely. It is available here:
Download the Herbert Protocol Form (PDF)
Practical Ways to Respond with Curiosity
Common threads from UK dementia guidance suggest the following steps:
- Pause and breathe. Steady yourself before responding.
- Check for immediate safety. Prioritise safety if there is any risk.
- Notice the emotion. Respond to the feeling behind the behaviour.
- Check basic needs. Pain, toileting, hunger, thirst, and temperature often play a role.
- Review the environment. Noise, shadows, glare, or large spaces can cause distress.
- Offer reassurance first. Short, calming statements can help reduce distress.
- Give clear, simple information. One step at a time.
- Redirect gently. Use familiar activities or comforting objects.
- Reflect afterwards. Spotting patterns helps future planning.
Looking After Yourself
Behaviour that challenges is emotionally demanding. Feelings of guilt, sadness, anger, or exhaustion are understandable. Support is available through GP services, dementia specialist nurses, carer groups, and local community organisations.
For further reflection, you may find this helpful:
Looking Ahead: Challenging Behaviours in Dementia Care
A dedicated training session titled Challenging Behaviours in Dementia Care will be available in the new year. Delivery may be online or face-to-face; further details will be shared when confirmed.
Summary
- As dementia progresses, behaviour often becomes a key form of communication.
- Behaviour that challenges frequently reflects unmet needs or emotional distress.
- Emotional logic explains why some statements feel real to the person.
- “I want to go home” often signals a need for safety, familiarity, or comfort.
- Elopement may reflect a search for familiarity, movement, or routine.
- The Herbert Protocol can support a safe and rapid response if someone goes missing.
- Practical steps and curiosity-based approaches help reduce distress.
- Carers’ wellbeing is equally important and support is available.
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