But you don’t look like you have dementia

By Dr Cecilia Chan
Gerontologist, Dementia advocate & activist

“But you don’t look like you have dementia!” A girlfriend of mine gets this comment all the time. What exactly does someone with dementia “look like?” What should she look like? Should she be unresponsive to her surroundings and bedridden or stuck in a wheelchair in a nursing home? Should she be incoherent and confused and look zombified?

Ah, yes, zombies. It is so common that we equate those living with dementia to zombies, people who exist in a state between life and death.

I was at a meeting ( a service provider’s AGM ) when someone chuckled and loudly said, “ Cecilia loves working with the crazy people, the demented ones, she loves zombies!” I cringed and I was also heartbroken. If we as service providers have such negative narratives about the ones we support, what about the rest of society? How did this happen? Why do we perpetuate such ugly attitudes?

Unfortunately, this ugly side of humankind is global.

“Dementia is a living death for 700,000 Britons” (Hill, 2008) This is the headline of an article in the British newspaper The Guardian. It goes on to describe the horrendous consequences of dementia: “To be trapped in the ‘living death’ of dementia is, for many, the most fearful of all endings. Relatives of sufferers often describe it as an illness that slowly switches off the lights in the brain. Savagely and pitilessly, it strips away memory, language, and personality, leaving only the shell of its victims behind. Finally, it robs them of their lives”

It is not rocket science that such a horrifying idea of being dead while still alive can fuel and magnify fears of dementia which sometimes result in reactive and rash decisions.

For example, my friend who was an amazing line dancing teacher, in fact, he introduced line dancing in his community, stopped dancing the day he received the diagnosis of dementia.

The label “living death” or “zombies” frames people living with dementia as passive, unresponsive beings. This often leads to social death. They are often excluded from the community as they seem to have nothing to contribute. People with dementia are often treated as already dead and as walking corpses to be both pitied by some and feared by most.

Let us be honest with ourselves. When we encounter someone who does not act or talk in the way we think is proper, we are presented with a choice, whether to accept them as a person, or not. Dementia does not exist in a vacuum. Dementia, itself does not rob one of his/her dignity. It is we as the human community who strip them of their dignity. Dementia is not a private problem but a social issue, for it is a concept that heavily relies upon the social construction that surrounds it.

If I were to have dementia, I hope there will be a chance for me to live a full life until the end. I hope my story will be more than just mere tragedy. My experience if I have dementia is beyond stories of loss and endless suffering, for I am sure I am much more than dementia, aren’t we all?

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