I read an interesting comment about the world’s frenzy around dementia and the discourse surrounding the syndrome. There are more and more horror stories with extreme notions of what are considered “symptoms that people are suffering from”. The comment referred to this as “dementia porn” – obsessive rhetoric around the horrors of what happens to people with neurocognitive impairment, the more gruesome the better.
What is this about? Why is every Facebook page or Support group inundated with “the slow death”, “we have lost our mother twice”, and “the horror of a disease that robs you of your life before you are dead”? People seem to get off on seeing who can be more graphic in their description – almost like stopping at a car crash to see blood and guts. What would be the motivation behind this?
I do believe that we humans are mostly wired for the negative. Very few people are naturally mindful of the beauty of each day and the miracle of life. We somehow love scratching in the dirt, we slow down to see dead bodies, we love gossip and horror stories…and when it comes to people living with dementia, we excel at telling each other how horrible it is. “Just wait, you will still see when it gets worse…” We portray monsters, not people, sharing stories of “faeces smeared across a wall”.
I have often said this – in all my years of working with people living with dementia, I have never seen anyone ‘suffer’ from the disease. Yes, I have seen people feeling anxious, lost, sad, even very sad. But don’t we all feel this from time to time? Why is it that when a person living with forgetfulness feels sad, they are ‘suffering’? Why do we insist on labelling perfectly normal emotions as the dreaded “symptoms of dementia”? More often than not the distress that is being expressed is as a result of what is happening in their environment, and not in their heads!
Thanks to our obsession with biomedical dementia porn we love labelling and categorising and boxing people in. We create “the four phases of dementia” – as if all people living with dementia are a homogenous group of soulless individuals, easily booked into our categories of disease.
People living with dementia are our teachers. THEY pull US out of our comfort zones, they challenge us to stop and listen, to stop doing and rushing and to start being. They teach us to see the world from a different perspective. They teach us patience, forgiveness, and humility. The more we see them as the true experts of their own lives, the more they will flourish, and the less we will feel the need for these demeaning stories.
We need to change the lens through which we look and the narrative of our discourse. I would love to go back to seeing dementia as just a part of our journey in life. Where we can transcend into a different reality, where we can see different things and communicate on different terms. A place where we can actually feel comfortable. That is the world we need to create – one that is inclusive, supportive, kind, loving, and full of humour. A world where we can open our hearts and our minds to see each other, not as carbon copies of one another, but as unique beings interacting in a wonderful universe full of surprises.
If we can do this, people will indeed stop “suffering”.