“Mutiara” reclaimed, We can’t cure dementia yet, but we can cure its stigma

Jun 29, 2024

We are pleased to introduce a new column dedicated to understanding and supporting those affected by dementia. As our population ages, dementia has become an increasingly significant issue, impacting not only individuals but also their families and communities. Through this monthly column, we aim to provide valuable insights, practical advice, and heartfelt stories to guide and support those navigating the challenges of dementia. Join us as we embark on this journey of education and empathy.

We had our second pop-up “Forgotten Mutiara Café” recently. Our pop-up café 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 [pearls] that is often forgotten - teenagers, artists, retirees, family members, those from the medical community and even exchange students from China. Our theme this round is to celebrate the gifts that we all share in common, that is the gift of our parents. Besides the homemade delicacies and beverages, we had fun with playful yet meaningful activities that allowed us to connect as human beings.

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

It was when we met everyone with acceptance. When we listen from our hearts, withholding judgments about one’s mannerisms or confusion. When we could enjoy being with each other and connecting without worrying about logic and correct interpretation, we could create a whole new world of inclusion. This was evident during our pop-up café. We witnessed those who are living in a non-verbal world connecting on 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 before dementia entered their lives, 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). Another was busy ordering the crew how to prepare the delicacies and how to serve them and one transformed into a PR officer ensuring that our guests were comfortable and got their orders.

Not a single person present was untouched by the miracles that 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 a society is like when vulnerability is a legitimate, well-supported life experience, and care is valued as central to all life.

We learned to be open to the present instead of insisting that the situation must conform to our preferences. We learned 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 rather, project our story into them. Unfortunately, this causes us to attribute a particular significance to an experience and miss its true meaning.

Dementia is a concept that relates directly to the social constructions that surround it. Think about it. The real impacts of dementia are felt in relationships. Dementia is experienced in interpersonal relationships, which is experienced both by the person living with it and by all those around them. If we are honest with ourselves, we will realise that it is not simply the disease, but how people with dementia are treated, that is the real fear factor.

Since there is currently no cure, we need to enhance our capacity to live with dementia. We need to understand the importance of acquiring the knowledge, skills, and attitudes that will improve and enhance this experience we all share as a community. Instead of our usual remark of ‘how tragic’, perhaps we need to shift to ‘how can I support this person and her carers?’

We need better ways of thinking and speaking about dementia beyond deficit-based framing. We need a more positive model that will honour the dignity, experience, and well-being of the person diagnosed and, that will have profound effects on carers and others impacted by dementia. We need the knowledge and the tools to equip our societies to live with dementia, to support better those with the dementia diagnosis and those who support them.

Einstein once 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 it determines how we react to it and ultimately what we do about it.

Dementia is not our tragedy. The real tragedy is our historical legacy: how we, as a society, have come to conceptualise humanness as an individualised entity to which differential statuses are attributed. We are social beings; therefore, we should be able to live in a society that will uphold us regardless of our circumstances. To imagine a liveable life with dementia is, by implication, to imagine a more liveable society, a more caring society for all citizens.

Let us continue to reclaim our “mutiaras”.

 --Dr Cecilia Chan is a Gerontologist and Dementia Advocate and Activist. She can be contacted via WhatsApp (013-4384388).