The start at the end of the world

I’m starting my research project in a couple of months on defining and assessing the characteristics of the built environment that contribute to the well-being of people with dementia living in aged care facilities in Singapore. Enrolment is at the end of next month and I’m excited. I’ve got my air tickets booked and even arranged for an air BnB near the University of Wollongong. I’ve never been there before, so pretty nervous and I get to meet my supervisors too! My primary supervisor is Prof Richard Fleming, who is an international expert in dementia environmental design; I have admired his work, and it’s a real honor to be able to work with him on my project. Some days I feel like I’m in the movie, “the castle” and people should be telling me “you’re dreaming!”

I grew up in Singapore, in Pek Kio (Hokkien for White Bridge). Historically it was also known as little England, as a result of the all the roads in the area being named after parts of England, such as Cambridge, Gloucester, and Kent.

Pek Kio Market and the Area Around Ex-Owen Primary School, Singapore (Photos Taken on 7 January 2015) Posted on January 8, 2015 by Roy Chan

As a child I never even dream that I would be a Ph.D. candidate. That was an impossible dream for me. The sheer cost of going to university at such a level felt like such an impossible feat. I remember being told to get married and have children instead of studying and there was not much point of doing much study being a woman. I was horrified. I soldiered on and never looked back.

Dementia is a subject that is very close to my heart, and it is an area that I had become highly passionate in, in the last decade. My great grandmother had dementia in a time in Singapore when no one had even heard about the word dementia. Her home had been renovated and she become trapped, living in her home that was not. She exhibited behavioural and psychological symptoms as a result of the unfamiliar environment.

As a personal care assistant and later an enrolled nurse, I witnessed the beneficial and detrimental effects of the environment firsthand. The design of the facility can impact the quality of life and care for the residents, the “care burden” for staff and the level of emotional distress for the caregivers. There is so much involved in the process, all the ambiguous loss and grief involved in moving from a home that one has resided for 30 years into a small compartmental space. I recall one lady telling me that it is “like moving into a much bigger coffin, and now we just have to start counting down the days”. Those says I was carrying out a small research project on how residents had positively adapted in their residential aged care facilities.

Going home to Singapore, our traditional homes are smaller, and our vernacular architect is different to those of the west, but the sentiments are the same. The sight of the residents broke my heart, and I wanted to do more. The concept of care appeared to be a “do whatever it takes” to prolong life and homes were boasting about residents who were living to 103. However, to see people restrained with hands tied to the bed rails and nasal gastric tubes snaking out like a lifeline. While they lay in bed with hollowed empty eyes at the ceiling above them made my heart ache with sorrow. It made me wonder if this is what they wanted, is this what their family would want for them? Is this how they want their story to end, is this how they would want to leave the world. I can’t imagine the physical pain they would feel, people around appear sometimes oblivious to the fact that people with dementia can feel pain and can be hurt. I can’t even being to imagine the mental torture that they must be in. I came across Yeo Kai Wen’s work one day and when I laid eyes on the photographs, it was like Alice through the looking glass.

However, one of my colleagues told me that they did the same in Australia back in the day, she mentioned that she knew how to restrain her patients in various ways. It sounded terrifying to me but perhaps in history, there must be a time such as this for everyone.

I hope my studies can make a difference and improve the care of people with dementia, not just in Singapore but potentially around the world. In the world with so much suffering, I think we can all do more, to make it better when we first began.

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