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Dementia: Reclaiming the ‘mutiara’

Let's rediscover the forgotten pearls that lie within people with dementia

The Forgotten Mutiara Cafe

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By Cecilia Chan

The day, 14 February, finally arrived. We were dizzy with excitement and anticipation over the outcome.

After six months of planning, we had transformed the eldercare centre into a pop-up cafe serving our guests high tea.

We, those living with dementia, care partners and volunteers (aka buddies), had set up the café and prepared the delicacies, complete with home-brewed coffee and tea (Malaysian style, of course).

Behind the scenes at the Mutiara cafe: Preparing the delicacies

Now it was time to serve our guests.

We were reclaiming the ‘mutiara’ (pearl) for our friends living with dementia.

Dementia is unique because it is a condition that responds to how we regard it and those labelled with it.

Unfortunately, more often than not, the labelling is negative and laden with fear and anguish. We focus on the loss, disabilities and changes rather than the being who is still inside.

The forgotten mutiara is the pearl that lies underneath the not-so-attractive shell.

In this unique cafe, the pearls work together to create an all-inclusive society. We want to show that it can be done. We strongly believe that a dementia-friendly community has the potential to promote social inclusion, change attitudes and behaviour.

Such understanding communities support people with dementia to live in meaningful ways. Examples of such support communities are increasingly clear in countries around the world.

We felt the joy and the genuine smiles of each one present. To me, this was the most meaningful Valentine’s celebration in my entire life. Our lives were touched and transformed profoundly.

We danced, we sang, we played, we laughed together and, most importantly, we celebrated love. Such an immense presence of love shared is difficult to fake. It can only be felt and each one of us felt it deeply.

We saw the beauty and meaning in everyone, instead of the cognitive decline. There were tears, happy tears, I was told when I asked. There was no better way to capture such a joyous feeling in a time of many challenges.

The Mutiara cafe crew: The author, Cecilia, is seated in the centre

The group showed they could collectively create and experience poignant beauty despite dementia. The power of creating meaning collectively has a profound and lasting legacy – because to describe it is as difficult as it is elusive. One has to experience it.

Our small tribe felt it and they understood it deeply. There is an urgency to spread this experience. Today, almost everyone knows of someone living with dementia. We now need to adjust to the realities of an ageing society, which will include changes.

How will we navigate them as neighbours, as a society, and in our cultures?

Dementia relies heavily upon the social constructions that surround it. We can choose to see beyond dementia and experience the interconnectedness among ourselves. We can experience and see this through the joy and love and the pure delight of shared engagement, as we did in the Forgotten Mutiara Cafe.

If we can achieve this in society, it will show our potential to be agents of change. We can make a difference and enable those who are living with dementia to have a higher quality of life.

Let’s remember that the tragedy of dementia is not so much about people forgetting things but about being forgotten by loved ones and by society.

So, let’s reclaim the mutiara. Let’s rediscover the forgotten pearls in our midst.

Dr Cecilia Chan, a gerontologist, is an activist who advocates for a new, more compassionate approach to people with dementia.    

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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