By Dr Cecilia Chan
It finally happened! After a year of planning, fundraising, gathering supporters and volunteers, and braving ourselves against naysayers and mood crashers, Jan 4, 2025, marked a memorable and historical date for all of us. We, those living with dementia (at diverse stages), 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 for the retreat was born out of pure frustration. We felt helpless witnessing people with dementia and their families struggle daily with limited resources and support. To add to their burden, they had to navigate systems both social and health care that often demoralize and degrade them. We believed this retreat could help break down the stigma surrounding dementia and offer family members a well-deserved respite. It would also provide those living with dementia the opportunity to experience life beyond the confines of their homes or institutions.
You should have seen the look on people’s faces when I first shared my idea. Most were completely shell-shocked (and I suspect they still are). I don’t blame them, though. If you search online, you’ll be overwhelmed with information telling you that people with dementia, especially in unfamiliar environments, will become disoriented, confused, anxious, agitated, and even aggressive. But we chose to push those fears aside and follow our hearts instead. We know these individuals; they are not just statistics. They are our friends, family members, and loved ones, our buddies, friends, mums and dads, and spouses. They are a part of us.
As the retreat evolved into something much deeper than just a break, we found ourselves growing more connected. We started to fall in love with our shared humanity as we allowed ourselves to be vulnerable. By the end, it became clear that what moved us the most were the parts of ourselves we usually hide to protect against perceived weaknesses. Ironically, it was only when we let down our defenses, embracing our silliness, reconnecting with our inner child, dancing freely, and singing our hearts out without self-consciousness that we truly began to connect with one another.
If we look up the word “retreat,” the dictionary defines it as “an act or process of withdrawing…” And in many ways, that’s exactly what we did. We withdrew from a world of comparisons and judgments. We stepped away from the world of labelling and “othering.” We shifted our focus away from disabilities and differences, and instead, we withdrew toward our hearts. It was through our hearts that we healed old wounds and built bridges across the gaps that had once divided us. In that space, we were fully present, alive, and tuned in for each other.
As we retreated to our centre, our hearts, the world seemed to shift. The morning sun felt warmer on our skin, and the sea breeze caressed us more gently, as if teaching us how to truly connect with one another. The walls that had once divided us began to crumble, and we sensed that our hearts had always known what this moment held: this is what real connection feels like. This is what love feels like. We celebrated the gift of life, even when it sometimes hurts, aching in places where pain had long taken root, along with the heartaches and losses we’ve carried. We embraced it all, knowing it’s an inevitable part of being human. Yet, beyond the pain, there was also joy, pleasure, and growth. The retreat became a retreat toward love, the most powerful antidote to dementia.
One of the most poignant moments for us came when we spent time with a couple, both living with dementia, while their daughter attended her company’s annual dinner and wouldn’t return to the hotel room until after midnight. We were in their room, chatting and playing, when they kindly offered that we sleep on their beds with them, since their large bed could easily fit all of us. The sincerity and warmth in their expressions touched us deeply. There was no trace of anxiety in their demeanour, and we understood why they felt safe and secure. In that moment, we were truly in it together.
When I asked participants about their experiences, the overwhelming theme was the sense of connection we shared. There was no distinction between those living with dementia and those without. Some family members mentioned that, for the first time in a long while, they didn’t have to think about the word “dementia.” Everyone shared that this experience had strengthened our bond, uniting us as one community of human beings, each with our vulnerabilities and fears. It felt like we were truly at home with one another. The only constant in life is change, and that can often feel overwhelmingly scary. But imagine a life without change. How could we appreciate the sunrise if the sun never set, or cherish the light if there were no darkness?
As we hugged each other at the end of the retreat, those embraces felt like a balm, offering deep healing and sealing our heart connections. This gift was both precious and liberating, guiding us to a place of pure acceptance.
I often found myself imagining the late Dr Thomas Kitwood, the father of dementia culture change, present during our retreat, reminding us that those living with dementia do not simply disappear. I pictured him telling us that their absence from society isn’t just due to the malfunctioning of their brains, but a reflection of our own societal failure. I even imagined him congratulating us for having the courage to challenge this dysfunction and change it.
We believe this retreat is a small but significant step toward transforming dementia care into a more genuinely humanistic approach. We hope you will join us in being part of this change.
Dr Cecilia Chan is a Gerontologist and Dementia Advocate and Activist. She can be contacted via WhatsApp (013-4384388). – Herald Malaysia
