Dementia: More than words

By Cecilia Chan

Why do we fear what we fear? Like dementia.

Let me share a recent story. My girlfriend and I were so excited to try a Michelin-rated restaurant.

We were greeted by a friendly waitress, who presented us with the menu and a wide smile.

My girlfriend explained we would need some time to study the menu because she has dementia.

Immediately, the waitress’s smile disappeared and she stopped making eye contact with my friend. She only spoke to me instead.

I couldn’t help but wonder if she assumed my friend was incompetent. My friend was immediately not treated as a person the minute dementia came into the picture.

This is the stigma my girlfriend and many others diagnosed with dementia face every day.

Dementia is a unique condition that is responsive to how to regard it and those labelled with it – because words and labels have power.

Words like dementia paralyse us with fear. The word has power over us. Perhaps we can take back and reclaim our power when we can begin to talk about dementia.

Let me share another recent story. Another friend, diagnosed with primary progressive aphasia, has limited vocabulary.

We asked him playfully if he used to visit dance clubs when he was young.

He sheepishly nodded with the most enchanting smile.

We then spontaneously decided to play a Chinese cha-cha song, and I stood up and motioned him, inviting him to dance with me.

He reached out to accept my outstretched hand, and we began to cha-cha away.

I had the most amazing time and, I believe, so did he. Why? We connected. There was a deep human connection that emerged when we were moving together, to synchronise through means other than mere language.

This is one of the avenues for meaning-making between people who cannot communicate through traditional language.

Human activity is beyond words and language. People living with dementia can engage in such activities with others, against popular misperception.

My story highlights how crucial it is to retain the potential for human connection and mutual relationship – despite language difficulties and challenges in navigating the world. We just need to find new ways of being together and sharing the moment.

Too often, those living with dementia are no longer seen for themselves but become merely a bundle of needs, a burden for others.

Relationships can remain reciprocal, and they challenge the tunnel view of dementia as one of decline and loss alone.

If dementia were to come to me, there would certainly be losses. But I would hope it would also be possible for me to have a meaningful life until my last breath. I would hope my story would be more than just a mere unfortunate tragedy.

From my perspective as a person living with the diagnosis, there is far too much emphasis on the label, the name, and the symptoms generally associated with the disease and too little emphasis on the individuals who actually have the disease. – Richard Taylor

Dr Cecilia Chan is a dementia activist and advocate based in Malaysia

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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