Why Dancing with Dementia

Jul 26, 2024

I am pretty sure many of you reading this column will be wondering about the name of this column — Dancing with Dementia.

The word dementia evokes powerful emotions. Hit Google, and we are immediately flooded with the persistent stories we tell, and are told, about this condition. The term “silent tsunami” of dementia has been a dominant watery image in many news stories. Many stories project the “slow-moving tsunami” (an oxymoron: tsunamis are not slow-moving) and the “wave” of dementia. In both cases, it indicates the sense of an unstoppable force of nature, coupled with quiet stealth. The stories we read about dementia in newspapers, books, and magazines, and that we hear about in films and on television and radio, ring the alarm, pointing to the catastrophe that may strike us.

As I reflect on my journey with dementia, both personally and professionally, I am reminded how stigma pervades casual conversation and language — and just how damaging this stigma can be. For as long as I can remember, I have heard people use debilitating words to describe those living with dementia. These casual mentions of “demented oldies” are not just momentarily offensive; they have wide-reaching consequences that deeply impact the lived experience of people with dementia, as well as their family members.

Navigating a world riddled with labels, judgment, and shaming, can be extremely exhausting, painful, and disheartening, for anyone. For people with dementia and their care partners, this compounds an already challenging circumstance: acknowledging, getting a diagnosis, and seeking treatment.

Shame is the word that surfaces again and again when it comes to dementia. Most of my friends living with dementia lock 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, 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. It is so sad that we live in a society with stereotypes; where judging has become a norm, which can be detrimental to the community.

Yes, dementia can be a frightening experience, but it can also be much more. Having been in the world of dementia for 20 years, I certainly have seen people with dementia, and people who love them, both nearly drowning in fear, grief, anxiety, and frustrations. And yet, I’ve also seen much more. I’ve seen both people with dementia, as well as those who care for them, transform through their fears and come to feel powerful pride and overwhelming joy, to show compassion selflessness, and kindness. I have seen how lives were transformed when one embraced life’s impermanence and embarked on a new journey with new loved ones. Some told me about their experiences of unconditional love.

Getting old isn’t easy for a lot of us, let alone living with dementia. Neither is living, neither is dying. Often, we struggle against the inevitable and we all suffer because of the struggle. Perhaps we could find another way to look at the whole process of being born, growing old, changing (including dementia), and dying, some kind of perspective that might allow us to deal with what we perceive as big obstacles, without having to be dragged through the painful drama.

The late Fr Henri Nouwen reminded us:

“As long as we continue to live as if we are what we do, what we have, and what other people think about us, we will remain filled with judgments, opinions, evaluations, and condemnations. We will remain addicted to putting people and things in their “right” place.”

I will not deny that dementia presents us with challenges and we struggle to handle them. Ever watched ballroom dancing? I have always been captivated by the elegance, grace, and enchantment of ballroom dancing. I am amazed by its ebb and flow. The give and take. The pause and the bursts of energy. The eloquent harmony. When we struggle there is tension, we push and pull. When we dance there is a harmonious flow, blending, and cooperation.

So, I have decided to learn to dance with Dementia.

So, shall we dance? 

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