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What makes us human?

Dementia forces us to make a choice: do we accept a person living with dementia, who perceives the world differently, as a person?


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We’ve been there before, dates where we can’t bear to even make it through dinner, dying to escape.

We come up with creative excuses to get the hell out.

I had my share of dates gone wrong. I am sure none of you bat an eyelid over this.  

Many did bat more than just eyelids when my friend wanted to escape from a similar uncomfortable experience. He felt he was in prison, as he had no friends and no meaningful activities. To live his life as he pleased was not an option. Like me, he wanted to escape.

The difference was he could not. He is living with dementia.

What are you to make of a place where people expect you to join in activities that are bizarre, out of your comfort zone?

How many of us will be OK with strangers being involved with the most personal and private spheres of our lives? Imagine lying stark naked and being touched in the most intimate areas and then getting into bed at night and sleeping without disturbance?

While this is unthinkable to us yet, why do we expect it to be OK for them, just because they have dementia?

The traditional paradigm of treating people living with dementia is characterised by the management of ‘challenging behaviours’ through control, containment and pharmacology (Dupuis et al, 2012).

Few people with dementia manage entirely on their own; but to be brutally honest, none of us can either. We, human beings, are part of couples, families and friendship groups who are interdependent. It will require us to reevaluate collectively what makes us human.

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Dementia forces us to make a choice. Confronted with someone who perceives the world differently from us, who cannot conceptualise a range of options or contribute to the productivity of material society, we are forced to decide whether we will accept them as a person.

If the answer is yes, then it is time to admit we have been working with a narrow, impoverished view of personhood.

The common view privileges and advances the rights and interests of ‘able-bodied’ and ‘rational’ consumers. It marginalises those living with dementia – a view that reflects that those living with dementia do not fit into our understanding of what humans should be.

Perhaps it is from this narrow view that a person with dementia can only be understood as a burden on society.

Worldwide, it has been estimated that there will be over 80 million people living with dementia by 2040 (Prince and Jackson, 2013).

Will we simply classify these 80 million human beings as a burden?

Dr Cecilia Chan is a gerontologist, dementia advocate and activist who shuttles between Penang and 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.

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