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Dancing with dementia retreat: Lessons learned.

By Dr Cecilia Chan
Gerontologist, Dementia Advocate and Activist

It finally happened, after a year of planning, raising funds, gathering supporters and volunteers, and braving ourselves against naysayers and mood crashers. January the 4th 2025 marked a memorable and historical date for all of us. We, those living with dementia (with a diverse stage), family members, and buddies got together for the first-ever dementia retreat in Malaysia. 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 our pure frustrations. We felt helpless when people with dementia and their family members were struggling daily without much resources and support. To add to their burden, they have to navigate through a system that demoralizes and degrades them, be it our social system or health system. With this retreat, we thought we could break the wall of that stigma, and give the family members a well-deserved break. It will 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 hit Google, we will be bombarded with information that will convince us that this homogeneous group of people with dementia “will get disorientated, confused, anxious and will get agitated and turn aggressive” if they are in unfamiliar places. However, we decided to push this threat 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, mums and dads, and spouses. They are part of us.

As our retreat started to morph into something more than just a break for everyone, we began to feel more and more 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 armor, allowing ourselves to be silly, be in touch with our inner child, do our dance, and sing our hearts out 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 withdrew from the world of “othering” and labeling. We withdrew from focusing on disabilities and differences. We withdrew toward our hearts. Through our hearts, we healed the wounds and built bridges across the gap that had separated us. We were fully present in the moment, alive, and tuned in for each other.

As we retreated to our center, our hearts, the world looked a tad different. The morning sun that kissed our skin felt warmer, the beach breeze caressed our skin gentler 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 what they had known 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 hurts and aches in places where pain has existed for so long and

yes, also the heartaches and loss. We embraced it all as it is all a part and parcel of being a human- being. Yet, beyond the pain and hurt there was also joy, pleasure, and growth. The retreat transformed into a retreat toward love, the most potent drug against dementia.

One of the most poignant moments for us was when we had to be with a couple (both living with dementia) as their daughter was attending her company’s annual dinner and would only return to the hotel room past 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 that touched us deeply. There was not a pinch of anxiety present and we know 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 separateness of 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. But 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 as our balm, giving us so much healing and sealing our heart connection. This gift was precious and liberating, shifting 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 of dementia care into a more genuinely humanistic one. We believe that you can be a part of that change and we hope that you will join us.

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