SEP 21 is World Alzheimer’s Day. It was introduced in 1994 in Edinburgh on the occasion of the 10th anniversary of Alzheimer’s Disease International. On this day, we are reminded of the escalation of dementia in a world that is fast ageing.

Here in Singapore, Dementia Singapore (www.dementia.org.sg) has organised an entire month’s activities to highlight the need to continue supporting the growing number of people with dementia and their families and caregivers. The number of people with dementia in Singapore is projected to reach 152,000 by 2030, up from around 92,000 today. And this does not include those whose families have chosen to keep quiet about them.

Factor in the family members who are impacted, and we are looking at large numbers of people who will need support.

Increasingly, we have also been seeing the age group of people with signs of early dementia getting younger. We tend to associate dementia with those who are aged 65 and above. In fact, we are seeing people as young as 50 with symptoms of early-stage dementia. No medical cure is available. There is medication, however, that attempts to slow down the onslaught of the condition.

Personal experience

My late father’s journey with dementia began one day when he told me: “I want to be baptised as a Catholic”. My wife and I were regular churchgoers, and there were a couple of occasions when my father came along with us to Novena Church on Thomson Road. But he was far from being a regular churchgoer.

For him to say that he wished to be a Catholic out of the blue was a pleasant surprise, from a religious perspective. Sadly, it did not auger well for his mental well-being, but with my mother’s agreement, we promptly arranged for him to meet a priest. In view of his mental condition, he was baptised right away without having to attend the mandatory one-year RCIA (Rite of Christian Initiation for Adults) course.

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My dad passed on more than a decade ago. He had earlier been diagnosed as having Alzheimer’s. The final few years of his life were difficult for us family members, and I imagine it must have been impossible for him. Slowly, we witnessed his caving in to dementia, becoming someone who was my father but not quite the same person.

The medication he took was still undergoing clinical trials then and among other side-effects, he hallucinated. I remember the day when he complained to me about spiders on the wall. Of course, there were none. Not knowing better then, I contradicted him and responded that there were no spiders on the wall. Such incidents were repeated countless times, frustrating family members and, I assume, himself as well.

He was a frequent visitor to the hospital during his final months. I will remember this for a long time – on the day he breathed his last breath, I heaved a sigh of relief. At that time, I could not reconcile that his only son felt that way – what kind of a son was I? Over time, I reasoned that he had gone to a better place, and that his suffering had finally ended. It was only then that I made peace with myself.

Lessons learnt

I did not reach out for help. I entrusted my late father’s care to foreign helpers. I did little, if anything at all, to seek help from professionals and public agencies. In hindsight, I could have sent the helper for some basic training and equipped myself with much more knowledge and awareness on how to live with and take care of a family member with dementia.

I should also have realised the importance of “entering” his world. Tensions could have been avoided. When he insisted that there were spiders on the wall, I could have agreed with him and managed it more positively by saying: “Yes, you’re right. I will get the pest control folks to come get rid of them later.” For all I know, he might possibly have forgotten about it soon after.

When his “nights” became his “days”, I could have encouraged him to go take a nap instead of feeling annoyed that he was keeping everyone awake at night. Easy to say now, but why didn’t I do it then?

Another mistake I ironically made was to entrust his daily care and needs to the helper. I thought that was what a good son should do.

By denying my father the opportunity to do some of the basic activities, such as feeding himself, I could have inadvertently caused his condition to worsen. The more inactive his mind was, the worse it deteriorated. What I should have done was to create pockets of opportunity for him to think and make decisions on his own, so long as these activities were low-risk and would not cause him any harm.

Since my father’s retirement from work in his early 50s, he wasn’t engaged much in activities that needed him to use his mind. He read the daily papers, napped a lot, and went with my mother on bus rides to town.

I have learnt that retirement has to take on a new meaning. Most of us are gainfully employed for the prime years of our lives. When we stop working full-time, we have to move on to do something else with our hours. Not staying physically and mentally active is an invitation to health issues and other problems.

Social network

My father was not a highly sociable person. We took him once to a day-care facility for people with dementia, hoping that it would become a routine where he could engage and interact with other attendees. However, he was not keen and did not want to return. I could have shown tough love and insisted that he tried it out for a couple more times. Again, I thought I was being a good son by adhering to his wishes. How wrong I was!

Having a social network is very necessary as it provides a platform for persons with dementia and caregivers to come together to interact and engage with one another. If nothing else, having others around us will be beneficial to our mental and emotional well-being.

Stigma

I did many wrong things in living with someone with dementia. One thing I (unknowingly) did right – I did not feel ashamed about having a person with dementia in my family. To me, it was a mental health issue, and it so happened that my father had this condition. I did not feel that there was a stigma to it.

However, survey results tell us otherwise.

A recent survey undertaken jointly by the Singapore Management University and Dementia Singapore (a follow-up to the first in 2019) concluded that there is still some way to go before Singapore becomes a dementia-inclusive society. Almost 60 per cent of people with dementia surveyed felt they are treated as being less able.

We need to continue educating the public about the subject and work hard towards becoming a people who embrace dementia and who accept it as a mental condition that is in our midst.

My wish

I wish for Singapore to accept dementia as a mental condition that will not just “not go away”, like the pandemic that we have just gotten out of, but which is likely going to get worse in terms of the number of people who will have the condition.

Acceptance is the first step. Next is coming together to support those with dementia and their caregivers, and to build a social fabric and infrastructure to be more inclusive and which does not stigmatise those with dementia. The fact of the matter is that dementia does not choose – it can happen to anyone.

My best hope is for those with dementia to continue to live as normal a life as possible, and in this context, family and society have a part to play.

The writer, an executive coach, is a volunteer with Dementia Singapore www.dementia.org.sg