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Dementia: ‘Mutiara’ reclaimed

At the Forgotten Mutiara Cafe, there was no segregation between those living with dementia and those who are not - and that was when the magic happened

DR CECILIA CHAN

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By Cecilia Chan

We had our second pop-up “Forgotten Mutiara Cafe” recently.

Our pop-up cafe is run by our friends living with dementia, volunteers and staff (we call ourselves the “crew”).

This time round the group was even more diverse. We had people living with dementia (the mutiara or pearls who are often forgotten), teenagers, artists, retirees, family members, those from the medical community and even exchange students from China.

Our theme this round was to celebrate the gifts we all share in common – the gift of our parents.

In addition to homemade delicacies and beverages, we had fun, playful yet meaningful activities that allowed us to connect as human beings.

At the Forgotten Mutiara Cafe, there was no segregation between those living with dementia and those who are not – and that was when the magic happened. It was when we met everyone with acceptance, when we listened from our hearts, withholding judgments about the mannerisms or confusion of others.

When we enjoy being with each other and connect without worrying about logic and correct interpretation, we create a whole new world of inclusion.

DR CECILIA CHAN

This was evident during our pop-up cafe. We witnessed those living in a non-verbal world connecting at a very deep level.

We witnessed someone usually confined in a wheelchair suddenly rise to lead us in Tai Chi as she has always been a Tai Chi devotee.

We witnessed a couple (one of them living with dementia) dancing together like they used to, with tears rolling down their cheeks.

We witnessed another beaming as she brewed coffee and tea as we delivered orders to her (as this was her work before dementia).

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Another was busy telling the crew how to prepare the delicacies and how to serve them.

Not a single person present was untouched by the miracles they witnessed.

DR CECILIA CHAN

Our interconnectedness through joy and love and the delight of shared engagement proved we have the potential to show solidarity. It gave us a glimpse of what society could be like when vulnerability is a legitimate, well-supported life experience, and care is valued as central to life.

We learnt to be open to the present instead of insisting the situation must conform to our preferences.

We learnt we are not merely our roles or our conditions. We may have dementia, but we are not our disease. We are human beings with all the complexities, fragility, and wonder that life encompasses.

When we look through a specific lens, we narrow our vision because we don’t see things and people as they are and instead project our story into them. Unfortunately, this causes us to attribute a particular significance to an experience and miss its true meaning.

Einstein made an interesting observation: “The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking.”

Maybe we should apply that to our thinking about dementia – because how we think about dementia determines how we react to it and ultimately what we do about it.

Let us continue to reclaim our mutiara.

Dr Cecilia Chan is a gerontologist, activist and advocate for people living 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
  1. Tegakkan maruah serta kualiti kehidupan rakyat
  2. Galakkan pembangunan saksama, lestari serta tangani krisis alam sekitar
  3. Raikan kerencaman dan keterangkuman
  4. Selamatkan demokrasi dan angkatkan keluhuran undang-undang
  5. Lawan rasuah dan kronisme
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