Reclaiming the “mutiara”

By Dr Cecilia Chan
Gerontologist, Dementia Advocate & Activist

The day finally arrived. We were dizzy with excitement and anticipation of the possible outcomes.

After six months of planning, we transformed the eldercare centre into a pop-up café serving our guests hi-tea. We, those living with dementia, care partners, and volunteers (aka buddies) set up the café, prepared the delicacies complete with home-brewed coffee and tea (Malaysian style, of course), and served our guests. We were reclaiming the “MUTIARA” for our friends living with dementia.

Dementia is unique because it is a condition that is responsive to how we regard it and those labeled with it. Unfortunately, more often, the labeling is negative and laden with fear and anguish. We tend to focus on the loss, disabilities, and changes rather than the being that is still inside. The forgotten “ Mutiara” reminds us of the pearl underneath the not-so-attractive shell. In this unique café, all the pearls work together, supporting each other to create an all-inclusive society.

We are not just all talk, we want to demonstrate that it can be done. We strongly believe that a Dementia-friendly community has the potential to promote social inclusion, change attitudes and behaviors, and support people with Dementia to live in their communities in meaningful ways, and examples are increasingly evident in countries around the world. We could feel the joy and genuine smiles from each present. It was to me 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 impossible to fake, it can only be felt and each one of us felt it deeply. We could see the beauty and meaning in everyone, instead of the cognitive decline. There were tears, happy tears I was told when I asked. No better way to capture such a joyous feeling in a time of many challenges when we 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 impossible as it is elusive, one has to experience it. Our small tribe felt it and they understood it deeply. There is an urgency that this experience is spread.

Currently, almost everyone knows of someone living with dementia. With this unprecedented era of having a longer life expectancy, we now need to adjust to the realities of an ageing society which will include changes. How will we navigate them as a neighbor, as a society, and as our Malaysian culture? Dementia relies so heavily upon the social constructions that surround it. We can choose to see beyond Dementia and experience the interconnectedness amongst us, which can be shown through joy and love and the pure delight of shared engagement as we did in the “Forgotten Mutiara Kafe”. This when achieved at a societal level, demonstrates that we have the potential to be agents of change to make the difference to enable those who are living with dementia to have a good quality of life. The most important message we wish to impart is that dementia is often not so much about forgetting but being forgotten.

So, let us reclaim back the Mutiara.

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