Debunking the myths of dementia
I CRINGE every time I hear the term BPSB (behavioural and psychological symptoms in dementia). It is being used so freely and accepted so openly now that it automatically causes us to medicalise and pathologise the expressions of people living with dementia.
In fact, we hold them to a higher emotional standard than we would ourselves. There is an immediate separateness between us and them. The obvious double standard becomes blurred.
Think for a moment – we get angry, sad, frustrated or anxious, but people with dementia have “behaviours”. We go for a walk, get bored and leave, but people with dementia “wander”, “exit-seek” or “elope”.
We become restless when forced to follow routines and schedules, but people with dementia “sundown”. We shop in bulk, but people with dementia “hoard”.
We resist being locked up, bossed around or touched by strangers, but people with dementia get “agitated”, aggressive” and “resist care”!
If people with dementia are upset because they are being undressed by strangers, locked inside a living area with no meaningful engagement throughout the day, or are simply expressing the range of emotions that we all display at times, how is that BPSB?
I believe dementia is the greatest shame of modern medicine not because there have been no significant advances in treatment but because we have lost our recognition of the humanity of those living with the condition due to perpetual stigmas, stereotyping, antipsychotics and labelling.
I adore Dr Allen Power’s definition of dementia as “a shift in the way a person experiences the world around her/him”. This provides us with the ability to change the mindset of blaming everything on brain disease. An internist, geriatrician, educator and published author in the United States, Dr Power is internationally respected for his work challenging the use of antipsychotic medications for people living with dementia.
By understanding that persons living with dementia experience the world differently, we can begin to uncover the root causes and work on solutions that support our shared humanity.
We all need to look closely at ourselves, our words and our practices, to question if we are sincerely honouring the person’s dignity, value, and human rights in everything we do. We can be the change we want to see.