It still seems that we too readily accept the use of the term challenging behaviour in reference to people living with dementia as though a) it should be expected and b) “they” are doing this to be difficult. Of course when we think about this we know that this is not true. But even the whitewashed version: behaviour that challenges places the emphasis on the behaviour of the person without taking into account the bigger picture.
At the DSDC we recommend using the term stress and distress, because most changes in behaviour are caused by heightened levels of stress for the person living with dementia. This stress can be caused by any number of things. Until we can identify the cause of the stress it can be difficult to alleviate the individuals stress levels. For people with living with dementia, and people living without dementia, prolonged periods of high stress lead to distress which usually manifests itself in behavioural changes.
Equally the use of Behavioural and Psychological Symptoms of Dementia (BPSD) makes it appear as though behaviour changes are a) a recognised symptom of dementia and b) unavoidable. But this is a medical model distortion of behaviour change. One again it relieves anyone else of responsibility for causing the individuals distress because it is just an inevitable part of the disease process. But we know better. Evidence shows us that our past experiences, the environment, how people engage with us, the expectations and behaviour of others, our medications, our physical and emotional needs, and many other things can impact on our behaviour. So why would that suddenly stop being true simply because one has dementia?
Once again language creeps in to create an ‘us and them culture’ in which the behaviour of people living with dementia is seen as a distinguishing factor that separates those ‘with’ and those ‘without’. But actually behaviour is about communication regardless of who is doing the communicating. If we want to support people well who are living with dementia, then we need to remember that communication requires a communicator and a receptor and so we must ask ourselves what is being communicated and what should I do with that information? We must listen with our eyes as well as our ears.
Find out more about understanding and responding to distressed behaviour by attending the DSDC course of the month.