Why Distressed Behaviour Happens in Dementia Care— and What We Can Do About It
If you’ve ever supported someone living with dementia, you’ll know that behaviour can sometimes take you by surprise. A sudden shout. A refusal to eat. Someone walking out of a room or becoming unusually quiet.
It can feel confusing or even upsetting — especially when you’re doing your best to help.
But here’s what I want more people to know: all behaviour has meaning. Even when someone can’t find the words, they’re still telling us something through their actions.
As a Behaviour Analyst specialising in dementia care, my work is all about helping carers and families understand that behaviour isn’t “just the dementia” — it’s communication.
If you’ve ever supported someone living with dementia, you’ll know that behaviour can sometimes take you by surprise. A sudden shout. A refusal to eat. Someone walking out of a room or becoming unusually quiet.
It can feel confusing or even upsetting — especially when you’re doing your best to help.
But here’s what I want more people to know: all behaviour has meaning. Even when someone can’t find the words, they’re still telling us something through their actions.
As a Behaviour Analyst specialising in dementia care, my work is all about helping carers and families understand that behaviour isn’t “just the dementia” — it’s communication.
Behaviour Is Communication
There’s a common belief that certain behaviours just “come with dementia” and can’t be changed. But many of the things we see — shouting, walking with purpose, lashing out, or becoming withdrawn — are not random or personal.
When medical causes have been ruled out, distressed behaviours are often the result of unmet needs.
When someone can’t say, “I’m in pain,” “I’m scared,” or “I need a break,” they’ll often show us in the only way they can. Behaviour becomes a message. And once we start looking at it that way, everything changes.
What Can Lead to Distress?
Distressed behaviour doesn’t just appear out of nowhere — it usually happens in response to something in the environment or because a person is trying to get a need met in the best way they know how.
Some common triggers I see in practice include:
Unclear expectations or sudden changes – when routines change or instructions aren’t easy to follow, people can feel overwhelmed or anxious
Physical discomfort – things like pain, hunger, tiredness, or needing the toilet can all increase the likelihood of distress
Sensory sensitivity – loud noises, cluttered spaces, or lighting that’s too dim or too harsh can create confusion or fear
Lack of control or choice – when people feel things are being done to them rather than with them, they may try to regain control in other ways
Limited stimulation or social connection – boredom, isolation, or a lack of meaningful interaction often leads to behaviours that seem “out of character,” but are really about seeking connection or engagement
These triggers don’t affect everyone the same way. But when we start paying attention to what happens before a behaviour and what the person might be trying to communicate, we’re much better placed to prevent distress before it escalates.
How Behaviour Support Helps
When I work directly with care teams or families, we take time to look at what might be behind someone’s actions. Often, it’s about small changes that make a big difference — like adjusting the environment, changing how we communicate, or making a routine feel more familiar.
I’ve seen people who were once described as “difficult” become calm and connected again. I’ve seen families finally understand what their loved one has been trying to tell them. And I’ve watched staff go from feeling helpless to confident — just by learning to see behaviour in a new way.
But the reality is, I can only be in one place at a time.
Reaching More People, More Often
There are so many carers out there — professionals and family members alike — who are doing their absolute best but don’t have access to a Behaviour Analyst.
That’s why I created Less Distress.
It’s a digital tool that helps carers spot patterns, reflect on what might be going on, and receive gentle, personalised suggestions rooted in behavioural science.
It’s not about fixing people — it’s about understanding them. And helping everyone involved feel more supported and less alone.
Whether you work in a care setting or support someone at home, Less Distress gives you the tools to respond with insight, empathy, and confidence, because when we take time to understand behaviour, we create calmer, more connected care — and that benefits everyone.
If you’re supporting someone with dementia — at home or at work — and want to better understand their behaviour, we’d love to invite you to be part of our early community.
Whether you’re interested in joining the pilot or want to be first in line when Less Distress launches fully, you can sign up below.
Join the pilot project or contact us