By Cecilia Chan
There is something very humbling about connecting with people living with dementia.
It triggers awareness within me of my own limitations. Often, being with people living with dementia forces me to face the parts of me that I may not have the courage to face – such as why do we so often shy away from people who we feel are different from us?
Why is dementia today the most feared condition globally? Recently when a team from Japan visited Malaysia to introduce the art of Totsu-Totsu dance as a means of communicating with people living with dementia, one man laughingly yelled in the open that we are wasting our time with these “crazy people”.
Such are the labels we slap on those living with dementia – demented, living dead, zombies, useless, stupid, gone and yes, even crazy.
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No wonder many fear dementia.
The stories about dementia we come across in newspapers, books, magazines, films, TV and radio ring the alarm, pointing to the catastrophe that may strike us. Dementia immediately freezes us in fear. But ironically, the fear reflex makes the experience of dementia worse.
We are living in a time of dementia. As we live longer than ever before, dementia touches the lives of more of us than ever before.
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 have seen people with dementia and people who love them alike nearly drowning in fear, grief, anxiety and frustration.
And yet, I have also seen much more. I have seen both people with dementia and those who care for them transforming themselves through their fears and coming to feel powerful pride and overwhelmingly joy, showing compassion, selflessness and pure love.
Perhaps if we share stories of people who move through fear and learn to live with stigma, who find meaning in the experience of dementia, we might help inspire more people to do the same – to see dementia as more than a death sentence.
Perhaps if that doctor who had treated his patients living with dementia the way he did, had come to terms with his own fears of and discomfort with people with dementia, things would be different.
Would the son have forbade his mum to walk the halls with her companion if he had more fully understood and accepted her world?
Would my friend Charlie be subject to such paralysing loneliness if his friends had a better grasp of dementia?
Perhaps if we do not feel awkward around loved ones with dementia, our friends living with dementia can continue to ‘dance’ what they feel like without being afraid of being judged.
How do we get to such a place? A place where our fears of dementia do not stop nursing, medical, and social work students from studying how to work with people with dementia. A place where daughters and sons, granddaughters and grandsons might look forward to spending time with their parent or grandparent with dementia.
It is time to examine our attitudes toward and beliefs about dementia. By challenging the stigma around dementia, we can transform our dementia-fearful society into a dementia-friendly one.
Dr Cecilia Chan is a gerontologist, researcher, dementia advocate and activist
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