By Cecilia Chan
The lens we use shapes how we look at things. Why is dementia currently the most feared condition?
Could it be deeply rooted in the lens through which we look at dementia? Alan Watt’s poignant message years ago awakens us to this reality so vividly. He stressed we may look at the very same rose but each one of us will experience that rose uniquely; it depends on our own perspectives.
Recently, I visited a friend who was admitted to a hospital. My friend lives in a different world, you see. He has dementia. Unfortunately, he was treated less than … because his world is different than ours.
When I saw him, my heart broke into a million pieces. A defenceless, fragile man in his 80s was tied, all four limbs to the bed.
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A nurse was trying to feed him with a syringe, and she was exasperated because he was “not cooperating” and was “refusing care”!
I wonder if we ever pause and reflect. Would it be acceptable to have yucky fluids (‘food’) injected into our mouth while being tied down, the entire body restrained?
When I, without the hospital authorities’ knowledge, secretly unrestrained him and held his hands, he began to narrate stories, which, of course, our ‘superior’ cognitive-driven world would regard as utter nonsense or unintelligent utterances.
I was curious about what he was experiencing in his world. Yet we share one thing in common – helplessness. I was as helpless as him because of the policies, the culture and the system we are in.
I guess it all boils down to this plain reality.
What may be almost as difficult as living with dementia is living within the narrative society has created.
Why on earth would we think it is OK to be tied down in a strange place where everyone dresses in uniforms and comes and harms and hurts you, rips you of your dignity, and treats you worse than a criminal for a crime you never committed?
Why was he tied up? Because he wanted to go home. Now, go figure who has brain failure here? Was he aggressive because he simply wanted to go home?
Our cultural narrative about Alzheimer’s disease and other forms of dementia is that it is the real aggressor.
We fixate on what people with dementia have lost, rather than the capacities they still have. We feel ashamed by the condition as if it is something to hide. It is tempting to want to tuck them away, where their deficiencies won’t disturb anyone.
Tragedy-thinking turns dementia into a scary thing – like a monster who might come over the horizon at any moment, too horrific to think about. Better to lock our fears about dementia in a box and never look at them and avoid contact with anyone who has been diagnosed. You never know when it might reach out and catch you.
Do an internet search for pictures on dementia and you will immediately be bombarded with photos depicting an old person, alone and forlorn, staring out of a window and tormented. Usually, their faces are half-faded or fading. Often their heads are blowing away like autumn leaves off a tree, always tragic.
Likewise, our everyday descriptions of dementia characterise people with the condition as “gone”, “disappearing”, as an “empty shell” or “not there”. Their illness is “stealing” or “robbing” them, as they suffer the “long goodbye”, turning them into “living zombies”.
Inexorable loss, dread and horror shape public perceptions of dementia – a condition imagined as steadily exterminating the person as a person. Dementia takes on an extraordinary centre stage of negativity and fatalism.
This framework, which envisions people as “gone” before they are dead, reflects and reinforces a culture that highly stigmatises brain disease – a stigma that fuels negative treatment. That is the reason that my friend was restrained in the hospital.
People with dementia are more vulnerable to being abused and neglected, improperly medicated and restrained, financially drained (just to get necessary care), socially abandoned, infantilised or ignored, displaced from their homes and segregated from the rest of the community.
We all need a wider framing of dementia, less focused on brain function and more concerned with shared humanness, including spiritual dimensions, extending beyond activists, experts and self-identified allies.
We need to examine the dementia-as-unmitigated-tragedy narrative that fuels dehumanisation, segregation and institutionalisation of people living with the condition.
Dr Cecilia Chan is a gerontologist, dementia advocate and activist