Is dementia a real enemy?

Sep 27, 2024

Dancing with Dementia - Dr Cecilia Chan
I was at a dinner recently, and someone casually asked me about my profession and when I explained, he simply shrugged and said, “Why should I bother? Why should anyone bother?” That statement hit me hard. Why indeed should we be bothered about people living with dementia? Similarly, I was with a bunch of young engineers who giggled when they found out about my work, it’s like being with a group of hopeless lunatics, according to them. This crystallises how we stigmatise dementia because words matter. How we talk about someone affects who that person is, how others perceive them, and how they perceive themselves. Our words represent our beliefs, morals, prejudices, and principles which can shape one’s perceptions of those living with dementia.

Is every life precious or only those we think are fit to be qualified as a human being? What if they are different than us? What if they are old, repetitive, forgetful, slow, silent, seemingly from a different world?

Shame is the word that surfaces again and again when it comes to dementia. Most of my friends living with dementia locked themselves in the house because of shame. A friend of mine, a retired matron was hiding the fact that her husband has dementia. She refused to inform anyone about it because it was a secret, a shameful secret. She is not alone, nearly everyone that contacted me has shared some elements of shame. It comes in many guises, and many forms, felt by the individual living with dementia as well as their family members. So, we hide it so that it will not be seen by strangers as well as friends because we are trying to protect ourselves from the judging world.

Today we live in a society with stereotypes; where sadly judging has become a norm, one that not many realise how detrimental it can be to the community. No wonder dementia is the MOST feared condition in the world now.

I have lost count of how many times I’ve seen people being impatient staring at computer screens or at their handphones rather than attending to an anxious and confused person in an unfamiliar environment. How often do we talk over them during procedures as if they do not exist? How often do we assume that it is okay not to seek their permission before touching them, and then get puzzled when they express their displeasure, we even label it as BPSD (Behavioural and Psychological Symptoms in Dementia). Would it be okay for people to touch us without our permission? Why is it that we fail to recognise that despite all their losses they are still human beings? If someone is forgetful or slow ? does that mean they are less than a human, that their lives are less valuable?

Someone dear to me has a wife living with dementia. Their children had long migrated overseas. She is the love of his life and still is after 60 long years. He is afraid of their future and he shared with me his wish to kill his wife before she becomes a living dead, a zombie. I could not stop my tears from flowing. I felt that slap on my face. How desperate must one be to want to kill someone you love because their future is so bleak to spare them the misery? What does that say about our culture? Dementia, like old age, does not exist in a vacuum. We as a society make a huge difference.

Often people who are living with dementia are missing people, forgotten and denied by a society that values independence, productivity, and youthfulness, and shuns away from vulnerability. Yet, we as humans are a species evolved to be social. We have an innate, biologically driven ability to develop and form interpersonal connections. The COVID-19 period of on and off lockdowns, restrictions, and social isolation has made it abundantly clear that we are not meant to be alone. Nothing has highlighted the importance of social connections more than the COVID-19 pandemic has. Yet, those living with dementia continue to live in isolation.

We also cannot deny that we, as human beings, have a longing to be seen, understood, and accepted for who we are. We all need people who would lovingly confront us when needed but also try to talk to us first, to understand where we come from and support us. Perhaps when we encounter someone living with dementia, it threatens our selfhood. Could it be that it triggers us to think of our future disgrace? It could be us in the future. We could be wearing diapers, forgetting how to use a spoon, begging for our mummies. So, we turn away, not me, not us, but THEM, the disgraced them.

Being a human being is so complex, it is beyond just cognitive ability. Maybe it is time for us to start by looking directly at our fear, to look at it squarely in the eyes, that is our own eyes. What makes us human?

I quote Mahatma Gandhi’s compassionate plea,” Let us be the change we want to see”.

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