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 the disease?
Alan Watt’s poignant message years ago awakens us to this reality so vividly.
He stressed that we may look at the very same rose but each one of us will experience that particular rose uniquely, it depends on our very 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 others because his world is different from ours.
When I saw him, my heart broke into a million pieces. A defenceless, fragile man in his 80’s was tied, all his four limbs to the bed.
A nurse was trying to feed him using 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 be injected with fluids called food into our mouth while being tied down, the entire body being restrained?
When I “secretly” unrestrained him, without the hospital’s knowledge, and held his hands, he began to narrate stories which of course our superior cognitive-driven world would regard as utter nonsense or “unintelligent utterance”.
I was curious about what he was experiencing in his world. Yet we shared one thing in common, helplessness.
I was as helpless as him because of the policies, the culture and the system we were 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 okay to be tied down in a strange place where everyone dressed in uniforms comes and harms 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’s something to hide.
It’s tempting to want to tuck them away, where their deficiencies won’t disturb anyone.
Tragedy thinking turns dementia into a scary thing.
Like the 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.
Google for pictures on dementia and you will immediately be bombarded with photos of dementia depicting an old person, alone and forlorn, staring out 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 also characterise people with the condition as “gone”, “disappearing”, “an empty shell” and “not there”, their illness is “stealing”, “robbing”, them as they suffer the “long goodbye”, the “living zombie”.
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 why 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 the 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. Comments: letters@thesundaily.com
