When Behaviour Is Communication: Using STOP and PAUSE to Understand Distress in Dementia Care

If you support someone living with dementia - either as a family member or paid carer - you will probably recognise moments where someone becomes distressed, withdrawn, frightened, angry or behaves differently from usual.

Often, there is a reason behind the distress, even if the person cannot easily explain it.

One approach I have come across repeatedly throughout dementia care practice is the idea of STOP and PAUSE - a simple framework encouraging us to slow down, stay curious and think about what someone may be trying to communicate through their behaviour.

I have spent some time trying to trace the original source of this approach and have unearthed several versions used across NHS and Social Care organisations over the years. I have not yet been able to identify the original author or team behind it, so if anyone does know where it first came from, I would genuinely love to hear from you so that appropriate acknowledgement can be given.

What I value about the framework is its simplicity and its strong person-centred message.

Because behaviour is often communication.

STOP before reacting

S - See things from the person’s perspective

What might this moment feel like for them?

Confusion, pain, fear, loneliness, overstimulation or frustration can all affect how someone responds.

T - Think about yourself

Our tone, pace, facial expression and stress levels matter more than we sometimes realise.

Slowing down and responding calmly can help someone feel safer.

O - Observe

What happened before the distress started?

Are there possible triggers, unmet needs or changes in the environment?

P - Patience

Finding the reason behind distress can take time.

Sometimes the smallest changes make the biggest difference.

PAUSE and think about the whole person

P - Physical needs

Could they be in pain, tired, hungry, thirsty, constipated, too hot, too cold or unwell?

Physical discomfort is a very common cause of distress in dementia.

A - Activities and environment

Could they be bored, isolated or overwhelmed?

Meaningful activity, routine and calm surroundings can all help reduce anxiety.

U - You

Supporting someone in distress can be exhausting emotionally and physically.

It is important to recognise your own wellbeing too and seek support when needed.

S - Self-esteem

People living with dementia still want to feel valued, included and respected.

Small opportunities for success, choice and independence matter.

E - Emotions

Even when memory changes, emotions remain deeply important.

Sometimes what someone needs most is reassurance, connection and to feel heard.

A gentle reminder

When we move from asking:

“How do we stop this behaviour?”

to:

“What might this person need right now?”

we often create more compassionate and effective dementia support.

And that is at the heart of person-centred care.

If you would like some support please get in touch.