It is 3.15pm and Madam Lee Poh Huay is nowhere to be seen for our interview at the bustling Jurong Point.

Beside me, her daughter Madam Koh Sok Cheng tries calling her but the calls to her mobile phone go unanswered. Lateness doesn’t usually faze me, but I found myself growing concerned as the minutes lapsed from our 3pm meeting time.

You see, 79-year-old Madam Lee is a person with dementia. To my surprise, Madam Koh remains a picture of calm and assures me that Madam Lee comes to Jurong Point every day, and no-shows are rare occurrences.

Another 10 minutes pass, and true to form, an elderly woman ambles towards us, her eyes dancing in recognition of Madam Koh.

At first glance, it is hard to tell that Madam Lee has a chronic illness that progressively impairs her mental processes, causing changes in her personality, behaviour and judgment. Sprightly and cheerful, she was happy to chatter away in Hokkien about her daily bus routes even though we had only just met.

First diagnosed with dementia in 2011, Madam Lee is one of an estimated 40,000 people living with the condition in Singapore. Dementia refers to a broad set of symptoms like impaired thinking and memory, and is caused by the likes of Alzheimer’s and Parkinson’s Disease.

According to a study released by the Institute of Mental Health in 2015, one in 10 people aged 60 and above here has dementia.

The early days after Madam Lee’s diagnosis were hard for her loved ones. The elderly woman turned prickly and difficult, and even alienated some of her close friends. After becoming a widow at 47, Madam Lee’s loneliness and sense of isolation spiked in recent years as relatives from her generation started to pass on. Madam Koh felt that this could have been one of the triggers for her condition.

The 51-year-old part-time dental assistant told The Pride: “I felt very guilty, like it was because of what we had not done for her that she became like that.”

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Mdm Lee looking through old family photographs. Image Source: The Pride

With the number of dementia patients expected to double to 80,000 by 2030, dementia is no longer just a problem to be managed behind closed family doors, but one that increasingly requires the involvement of the community at large.

Of this larger public, dementia is most likely to hang on the periphery for those who are younger as they encounter it less frequently. As a result, they are poorly equipped to spot symptoms in their loved ones or empathise with the behaviours of persons with dementia in public.

This gap troubled 23-year-old Eva Chow, whose brother-in-law’s father was diagnosed with dementia in his late 50s after developing memory loss. Healthy and active, his case of young-onset dementia had shocked the family.

Speaking to The Pride, the Nanyang Technological University undergraduate explained: “Given the nature of dementia and young-onset dementia, it affects our family and even ourselves. So it’s important to know how to deal with it.”

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Friends of Dementia’s Hazel Cheong (left) and Eva Chow were keen to normalise dementia and encourage empathy. Image Source: The Pride

Along with two friends, Chow launched a campaign called Friends of Dementia as part of their graduation project in late 2016, where, for a change, youths would lead the discussion on this elderly-centric topic. In a survey the team conducted here among 470 polytechnic and university students, it was found that almost 70 per cent were hesitant about approaching people with dementia despite being willing to help them in a moment of need.

Without some understanding of the ways dementia affects a person’s behaviour and how to approach them with tact, it would be difficult to address this lack of confidence. The public would also hold persons with dementia to certain standards of decorum that they are unable to meet, instead of showing some much-needed empathy and compassion.

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Soon after her mother’s diagnosis, Madam Koh left her job at a statutory board to spend more time with her and became one of Madam Lee’s main caregivers. By then, the elderly woman had developed quirks that included a tendency to snack on bus rides. This often attracted disapproving stares and Madam Koh would bear the brunt of the attention.

“Some people don’t understand, so they become afraid. Some associate it with mental illness because their behaviours are different from normal people.”

To normalise dementia, Friends of Dementia taught youths how to identify symptoms of dementia through informational talks and roadshows. This meant dispelling some common misconceptions, such as memory loss being the main symptom of dementia (the disorder can manifest as speech impediments or mood and personality changes, too), or that persons with dementia are prone to aggressiveness. They also produced a series of postcards featuring the everyday routines of a person with dementia, to show that they were much like the average person.

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Explaining how the campaign could make a difference, team member Hazel Cheong, 22, said: “The aim is for youths to know the signs of dementia. If we see someone on the street who looks lost, we can go up to help them and know how to help them.”

“This is what constitutes a dementia-friendly community. With awareness, we’ll also know how to watch out for the signs in our loved ones.”

The team also brought student volunteers to help out at Awwa Dementia Day Care Centre over three sessions, and their peers were routinely struck by how those under the centre’s care behaved much like regular folk, apart from the occasional memory slip and a tendency to repeat themselves.

With the government recently announcing that more dementia-friendly towns would be set up to join Yishun, Hong Kah North and Macpherson, there are positive signs that Singapore is preparing itself to better care for its ageing population. A dementia-friendly town is one where community members like businesses and residents are trained to spot those with dementia and lend a helping hand.

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Friends of Dementia reached out to youths via road shows at various polytechnics and universities. Image Source: Facebook / Friends of Dementia

In Madam Lee’s case, she maintains a fierce streak of independence even as her dementia inches into the early moderate stage. Worried that she would go missing, her children had initially tried to confine her to her home, much to her chagrin.

Today, her moods have vastly improved and she enjoys her daily routine of travelling solo from her home in Jurong West to Eunos for her favourite bowl of fish soup, before taking a two-hour bus journey back to Jurong Point, where she mingles with shopkeepers and goes window shopping.

Madam Koh, who took up a course at the Alzheimer’s Disease Association to understand her mother’s condition better, explained: “People with dementia still have their thoughts and dignity. We need to respect them and not deprive them from doing what they enjoy. In my mother’s case, she enjoys going out to socialise. So my siblings and I decided that we should just let her go out and not confine her to the home.”

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Although her short-term memory has weakened, Madam Lee enjoys recalling fond memories related to her loved ones. Image Source: The Pride

After the course, Madam Koh also went on to do a two year-stint with the Association to provide one-on-one care for patients at their homes.

With time, she has come to see the important role that a strong support network plays in helping persons with dementia navigate their condition.

“It’s not the person with dementia who should accept that they have dementia, but the people around them who need to accept it… After you accept, you can accommodate and understand their needs. If you don’t accept, how can you move on with them?”

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As we open up the conversation on dementia and foster inclusive attitudes, persons with dementia will no longer have to shrink into the background of Singapore’s community.

“For many persons with dementia, their families don’t let them leave their homes, and they stay cooped up at home and don’t have any freedom. If we have a dementia-friendly community, where people know how to look out for persons with dementia, it would really enhance their welfare,” Cheong says.

To find out more about dementia and explore caregiver resources, please visit the Alzheimer’s Disease Association’s website.

Top Image: The Pride