We called it the “Dancing with Dementia Retreat” which took place in a beach resort in Penang. Initially, the idea of a retreat took birth from the frustrations of my team. We felt helpless when people with dementia and their family members were struggling daily without much support or resources. To add to the burden, they must navigate through social systems and health systems that demoralize and degrade them. We thought this retreat could break the wall of that stigma and give the family members a well-deserved break. It would also provide those living with dementia a chance to enjoy life beyond the walls of their homes or institutions. You cannot imagine the look on people’s faces when I told them about my idea. Most of them were shell-shocked. I suspect that they still are. I do not blame them, because if we search the internet, we will be bombarded with information that will convince us that those with dementia will get disorientated, confused, anxious, agitated and turn aggressive if they are in unfamiliar places. We decided to push this aside and chose instead to listen to our hearts. We know these people. They are NOT merely statistics of dementia. They are our buddies, friends, moms, dads, and spouses.
As our retreat started to morph into something more than just a break for everyone, we began to feel increasingly connected. We began to fall in love with our shared humanity as we allowed ourselves to be vulnerable. Towards the end, it dawned on us that what touched us most was the parts of us that we would normally try to hide, to guard ourselves against perceived weaknesses. Ironically, it was when we started to remove our defensive armour, allowing ourselves to be silly, be in touch with our inner child, do our dance, and sing without being self-conscious, that we began to connect with each other.
If we search for a definition of retreat, the dictionary describes it as “an act or process of withdrawing...” I guess that was exactly what we did.
We withdrew from the world of comparisons and judgments. We eliminated the constant noise of "othering" and the labels that box us in. We withdrew from a world that focuses on our differences and disabilities, into a world that connects us in our shared humanity.
We withdrew toward our hearts. Through our hearts we healed the wounds and built bridges across the gap that had separated us. These weren’t bridges of logic or words, but of empathy and silent understanding. In that withdrawal, we were truly present, truly alive and tuned in to each other.
We looked beyond the masks and the labels, recognizing a shared humanity that was both fragile and beautiful. It was an almost sacred moment of grace, a quiet rebellion against a world that teaches us to stay apart.
As we retreated to our hearts, the world looked a tad different. The morning sun that kissed our skin felt warmer. The beach breeze caressed our skin more gently, as if teaching us how to relate with one another. We felt that the walls that were dividing us crumbled, as if our hearts knew all this while that this is what real connection feels like. This is what love feels like.
We celebrated this gift of life, though at times it hurt and ached as we acknowledged the heartaches and loss. We embraced it all, as it is all a part of being a human being. Beyond the pain and hurt, there was also joy, pleasure, and growth. The retreat transformed into a retreat toward love, which felt like the most potent drug against dementia.
One of the most poignant moments for my team and me was when we stayed with a couple (both living with dementia) as their daughter was attending her company’s annual dinner and would return to the hotel room after midnight. We were in their room chatting and playing, when they both offered that we sleep on their beds with them since they have such a huge bed that could easily fit all of us. Their facial expressions were so genuine and pure. It touched us deeply. There was not a pinch of anxiety present. We knew why, because they felt safe and secure. We were in it together.
When I asked participants about their experiences, the main theme shared was how connected we were. There was no separation between who had dementia and who had not. Some family members shared that for the first time in a long while, they were not reminded of the word “dementia.” Everyone shared that this experience had tightened our bond as one community of human beings, each with our vulnerabilities and fears. It felt like we were at home with each other.
The only thing that is permanent in this world is change and that indeed can be overwhelmingly scary. Yet imagine a life without changes. How can we appreciate the sunrise if the sun never sets or appreciate the light if there is no darkness?
As we hugged each other at the end of the retreat, we felt the hugs giving us so much healing, sealing our heart connection. This gift was precious and liberating, allowing us to shift to a place of pure acceptance.
I fantasized that the late Dr Kitwood, the father of the dementia culture change, was present during our retreat, reiterating to us that those with dementia do not disappear automatically. I imagined him reminding us that it is not merely because of the malfunctioning of their private brains that they disappear from society, and that it has everything to do with our malfunctioning as a society. I also fantasized about him congratulating us for having the courage to change this malfunction.*
We believe that this retreat is a small step towards changing our culture into a more genuinely humanistic one. May we choose to build bridges instead of walls.
ABOUT THE AUTHOR:
Dr. Cecilia Chan has been involved in the eldercare industry for the past 20 years. She is a Gerontologist, a Trainer, a researcher, and a very passionate dementia advocate, and activist. She has been involved in various projects concerning providing services and facilities to the Malaysian elderly. She initiated a local support group called Living Beyond Dementia for people living with dementia, their loved ones and care partners.
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