"No disability or dictionary out there is capable of clearly defining who we are as a person. It's only when we step out of that labelled box, that our abilities begin to be fully recognised, giving us a better definition of who we truly are as individuals". - Robert M Hensel

What are "challenging behaviours"?

Too often people living with dementia are seen as having "challenging behaviours". These can range from resisting a shower, refusing to eat, pushing someone away who is trying to help them, crying or arguing. The person is then often labelled as resistive, non-compliant, argumentative, agitated, grumpy, 'having a bad day', fearful, clingy, tearful, and the list goes on. 

Our view of the person's behaviour

Supporting a person with dementia starts with how we view the person's behaviour.  To find a solution to a person's changing a behaviour we need to avoid labelling or judging it, and instead see it from their perspective.  If we can describe the behaviour specifically to their logic and reason, only then can we become curious and understand what options and changes may best support their behaviour. 

Watch the following Dementia Careblazer video for further discussions around labelling someone with dementia, and how this can make it difficult for both the person with dementia and the care partner. 

Have you ever stopped to think why the person with dementia is reacting in a particular way? Perhaps they are reacting to how they are feeling, what has just been said, or what is happening around them.  

Behaviour is the action we take as we respond to a situation. For a person with dementia, the changes in their brain make it more difficult for them to act in the way they have normally done in the past. They may find it harder to express and explain their point of view as they may lack the vocabulary and language production to articulate how they are feeling. So instead, they will communicate their wants and needs in other ways. 

All behaviours are communication

In essence all behaviours are the person with dementia trying to communicate a message or an unmet need. For example, the person with dementia might be trying to say:

• "I don't feel safe with you"

• "I don't understand what is happening"

• "I don't like your tone of voice"

• "I feel unheard and disrespected"

• "I am in pain"

• "I feel bored and have a lack of purpose"

• "I feel lonely, and I don't feel loved and safe"

We need to try and understand why the person with dementia is behaving in a certain way. Seeing the person with dementia's perspective and thinking about how they may be feeling is when we can understand their message. Only then can we meet their unmet needs, and offer support that is delivered with dignity and respect.

There are no fixed ways of understanding and supporting a person with dementia's unmet needs, everyone is different. You will have to use trial and error by testing what works and what doesn’t. What works for one person may not work for another, and from one day to the next it may also not work. 

Module Three discusses practical strategies and solutions to how best meet and support a person with dementia's unmet needs.

Personhood

All too often we look at the clinical diagnosis of dementia, and it easy to see the person as losing their identity, and we then treat them in a different way.  A dementia diagnosis should not define the person, even as they change through their journey of dementia. A person's 'self' or personhood should always be allowed to shine, rather than the person "fading away". We need to ensure that people with dementia continue to be "alive on the inside" and are known deeply for who they are.

The person's true identity or personhood often comes more to light with dementia; maybe it is personhood at its most authentic level. Instead of seeing people as having "challenging behaviours", we could see all behaviours as the person with dementia's true self or personhood shining through. 

Watch the following video that discusses the importance of personhood when it comes to people living with dementia. 

 
We need to see people living with dementia as still embodied in life and love, and that there is more to a person with dementia then loss and failure.  Perhaps dementia could be seen as enhancing a persons' identity rather than damaging it, or taking it away. 

The following Tedx talk discusses self-identity and how dementia cannot take away some's embodiment and their place in the world.