by Cecilia Chan
“There was humour and above all, there was hope – not for a cure, but of finding meaning and closeness and human strength in the face of adversity.” – Prof Bob Woods, director of Dementia Services Development Centre, Wales
My direct involvement in the world of dementia has made me deal with the real issues of dementia very intimately.
Being in the healthcare industry, I had automatically looked at dementia through a biomedical lens, which focuses on loss.
Unfortunately, this approach has not helped me to support my friends living with dementia so that they have a decent quality of life. Neither has it been helpful to support their care partners or caregivers.
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Quality of life – isn’t that what all of us desire? To live our best lives no matter what. Despite our ageing bodies, impaired vision and hearing difficulties, we wish to have a good quality of life.
I began to question the traditional approach, as it has failed to provide a pathway to provide basic means of support for those living with dementia. The media and even sometimes dementia campaigns (though well-meaning) unfortunately reinforce the tragedy narratives of dementia.
Perhaps it is time for reflection. We cannot expect different results using the same old approach.
It is time for a fresh approach, a time to reimagine dementia. How can we work together to reduce the paralysing stigma and fears that surround dementia?
So when I discovered an unusual team of artistes introducing their totsu-totsu dance as a means of connecting with people living with dementia, I was immediately mesmerised.
I was curious and thirsty to know more. I turned into a merciless stalker, and contacted them through all means, and it bore fruit. I entered their world of creative arts (which is foreign to me, and it still is) and I was dumbfounded. None of them have any medical or healthcare background.
Totsu-totsu dance uses an approach that encourages dancers to express themselves through their unique movements.
For example, during one session, the inspiration for a movement arose from a narrative about their favourite shared experiences between the persons living with dementia and their partners, and it was up to them to express the movements concerning that.
Participants were dancing to express the times when their mums were cooking them their favourite meals in the kitchen or when they were sharing their favourite snacks. This approach so beautifully supports non-verbal communication, providing a way to connect without words.
My two-week stay in Japan opened my eyes to the possibility of transforming our dementia-phobic culture into a culture of compassion and acceptance. The various teams from very diverse backgrounds and walks of life that I met in Japan were living out that culture of compassionate acceptance.
When I shared my stories about the reality of how dementia is so loaded with negative narratives and stigma in Malaysia and how it affects the lives of those living with dementia and their family members, they were quick to assure me they too went through that valley of darkness.
The transformation in Japan did not happen overnight. That gave me hope. I hold out hope that sharing the stories of how they succeeded in moving through fear and learned to find meaning in the experience of dementia, might help inspire us in Malaysia to do the same – to see dementia as more than a death sentence.
We cannot deny we are living in a time of dementia. Since we are living longer than ever before, dementia will touch the lives of more of us than ever before. I hope we can burrow into that fear and directly confront it. Perhaps this will lead to better understanding so that it won’t interfere with living a full life with dementia and loving people with dementia.
If we as a community can understand what kinds of services and support might help them, we all will be better able to work through their fears and ease the tragic social conditions of the disease – isolation, stress and depression.
We can be the change we want to see.
Dr Cecilia Chan, a gerontologist, is a dementia support advocate and activist
AGENDA RAKYAT - Lima perkara utama
- Tegakkan maruah serta kualiti kehidupan rakyat
- Galakkan pembangunan saksama, lestari serta tangani krisis alam sekitar
- Raikan kerencaman dan keterangkuman
- Selamatkan demokrasi dan angkatkan keluhuran undang-undang
- Lawan rasuah dan kronisme
As in her previous article in Aliran, Dr Chan writes persuasively, compassionately, and with new insights into dementia. Thk u, Dr