WE recently held our second pop-up event, the “Forgotten Mutiara Cafe”. This cafe is run by our friends living with dementia, volunteers, and staff.

This time, the group was even more diverse. We had people living with dementia (the “mutiara” that is often forgotten), teenagers, artists, retirees, relatives, members of the medical community, and even exchange students from China. The theme was to celebrate the gifts we share, particularly the gift of our parents. Besides the homemade delicacies and beverages, we enjoyed playful yet meaningful activities that allowed us to connect as human beings.

At the Forgotten Mutiara Cafe, there is no segregation between those living with dementia and those who do not, and that is where the magic happens. We meet everyone with acceptance, listening from our hearts and withholding judgments about behaviour and confusion. When we enjoy each other’s company and connect without worrying about logic and correct interpretation, we can create a whole new world of inclusion. This was evident at our event.

We witnessed those who are living in a non-verbal world connecting on a deep level. We saw someone usually confined to a wheelchair rise to lead us in tai chi. We saw a couple (one living with dementia) dancing together as they used to, with tears rolling down their cheeks. We saw another person beaming as she brewed coffee and tea, recalling her work before dementia. Another was busy directing the crew on how to prepare and serve the refreshments.

Not a single person present was untouched by the miracles they witnessed. Our interconnectedness through joy and love, and the delight of shared engagement, proved that we have the potential to demonstrate solidarity. It gave us a glimpse of what society is like when vulnerability is a legitimate, well-supported life experience, and care is valued as central to all life.

We learnt to be open to the present instead of insisting that the situation conform to our preferences. We learnt that 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 but project our story onto them. This causes us to attribute particular significance to an experience and miss its true meaning.

Einstein said, “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”. – June 6, 2024.

* Dr Cecilia Chan is a gerontologist and dementia advocate.

* This is the opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insight. Article may be edited for brevity and clarity.