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But you don’t look like you have dementia!

Dementia itself does not rob people of their dignity. It is we, the human community, who strip them of their dignity


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By Cecilia Chan

“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.

Many equate those living with dementia to zombies, people who exist in a state between life and death.

Once, when I was at a service provider’s annual general meeting, someone chuckled and loudly said, “Cecilia loves working with the ‘crazy’ people, the demented ones. She loves zombies!”

I cringed and felt 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…” This was the headline of a Guardian article, which went 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 hardly surprising that such amplification of the horrifying idea of being dead while still alive fuels and magnifies fears of dementia.

READ MORE:  Communication without words in dementia world

This can sometimes result in reactive and rash decisions. For instance, a friend of mine who was an amazing line dancing teacher – he introduced line dancing in his community – stopped dancing the day he was diagnosed with dementia.

The labels “living death” and “zombies” frame people living with dementia as passive, unresponsive beings. This often leads to social death: people with dementia are often excluded from the community, as society sees them as having nothing further to contribute. They are often treated as already dead, as walking corpses to be both pitied by some and feared by most.

Let’s 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.

Dementia does not exist in a vacuum. Dementia itself does not rob people of their dignity. It is we, 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 had dementia, I’d hope I would have the chance to live a full life until the end. I’d hope my story would be more than just mere tragedy. My experience if I had dementia would be beyond stories of loss and endless suffering, for I am sure I would be much more than dementia. Aren’t we all?

Dr Cecilia Chan is a gerontologist, dementia advocate and activist based in Ipoh

The views expressed in Aliran's media statements and the NGO statements we have endorsed reflect Aliran's official stand. Views and opinions expressed in other pieces published here do not necessarily reflect Aliran's official position.

AGENDA RAKYAT - Lima perkara utama
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