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“It’s the dementia, they can’t help it” – Reflection on Dementia Behaviours

walking with grandfather - people living with dementia blog post
Caroline 29 November 2022


by Sue Brewin, Dementia Trainer, Coleman Training.

Over the years we have had many titles to explain the way that people living with dementia are expressing their needs and feelings. ‘Challenging Behaviours’, ’Dealing with Aggression’, ’Behaviours we Find Difficult’ to name but a few.

The one thing that these titles have in common is the negative focus on the behaviour, leading to a culture of blame.

If staff are trained to think that behaviours arise through the experience of dementia then they will have an expectation that this is the norm.

So often when I am facilitating training, care staff will say to me that they expect to be hit, have their hair pulled, kicked etc. They go to work everyday thinking it is a part of their job, some have even shown me the bruises on their arms to validate their experience.

When I ask them why, they often respond by saying ‘It’s the dementia, they can’t help it’.

How many other professions have that level of expectation? Why are our care staff who are so often underpaid accepting this as part of their work?

If we are truly valuing our care staff, we need to help them understand the reasons behind behaviours, to step into the world of the people they are supporting and to see behaviours as ‘distress’.

Helping staff to think of times in their own life when they have expressed a ‘behaviour’ and then encouraging them to think about why the behaviour happened in the first place allows them to start to explore some of the distress that the people they support may be experiencing.

Experiential training is often the key to learning. The ‘lightbulb’ moments are the things we remember and inform our practice.

In over twenty years of working within dementia training I have never experienced care staff acting in a malicious way towards people living with dementia. I have however witnessed an awful lot of distress unwittingly caused by the actions of staff.

One such example was a lady with dementia who was wearing a new blouse her daughter had bought her. A member of staff, with very good intention, approached the lady and exclaimed ‘Barbara, that blouse is sick!’

‘Sick’ is a term used by a certain generation to mean ‘awesome’. To the lady wearing the blouse it meant the opposite. She heard the word ‘Sick’ and thought that she had vomit down her blouse, became very distressed and immediately began to undress. This is just one example of how a simple word can create a big issue.

The way in which we communicate with people experiencing dementia can enhance their wellbeing or create feelings of ill-being.

Responding to an individual’s distress can take time, but if we don’t respond appropriately, the distress can last a lot longer.

People living with dementia are often experiencing massive changes in their life. An environment that is unfamiliar and confusing, other people around that they don’t know, family members that are missing and familiar routines that they are no longer taking part in such as washing and dressing.

These changes can lead to people expressing distress and using words such as ‘I wish I was dead’ or ‘please just let me go’.

These are powerful statements for anyone to make and imply a great deal of unhappiness.

Staff often feel afraid that they will say the wrong thing and make the situation worse, so may reply in a jovial or dismissive manner which leaves the individual with the distress and no solution.

For anyone supporting people living with dementia, we need to respond in a way that validates the feelings of the individual.

Helping staff to explore what helps them in moments of distress can give them confidence to use these approaches with the people they support. Sitting with the individual and acknowledging how they are feeling, allowing the person time to express themselves and letting the person know you are there and hear what they say can offer comfort at acute periods of distress.

Responding to distress is not rocket science. It’s about understanding that distress is a human emotion that we all experience if there are triggers, and behaviours are the end result.

Let’s start to empower our staff to look at what the triggers might be so they can go to work confident that they can improve the lives of the people they support.

If you’d like to support your staff and your clients, why not give us a call?  Our Dementia Awareness course, A Mile in My Shoes, was developed for CQC inspectors and will give staff the foundation from which to build a rewarding career in dementia care, which doesn’t involve fear, each time they come to work.  In addition to this, our Where Worlds Collide dementia behaviours course examines historic attitudes and language that describe behaviours expressed by people living with dementia.

To learn more or to book a dementia training course please call Juanita on 07389 720856 

We also want to hear from you. Our team at Coleman Training would love to hear from our colleagues working in the care sector about a time where effective and clear communication really helped you and your clients. We invite you to share your experience with us!