By Stacy Ooi
On the 18th of August, local filmmakers Jeremy Boo and Lee Xian Jie launched Grandmother’s Garden, a compilation of prose, poetry and artwork capturing the stories of those with relatives suffering from dementia. The book is part of the duo’s larger project Before We Forget, a campaign to spark conversations about dementia and melt away the ignorance and stigma surrounding it in Asia. Those attending the launch included Guest of Honour, Minister of Parliament Denise Phua whose mother suffers from Alzheimer’s, as well as several people whose stories had been published in the book.
What exactly don’t we know about dementia that makes these filmmakers feel the need to raise awareness about it?
Firstly, the condition is going to affect an increasing number of people. The Alzheimer’s Association of Singapore estimates that by 2050, there will be 187,000 people with dementia up from the current 22,000. ‘Prepare for the elderly tsunami,’ cautioned Ms Phua, as our ageing population is expected to bring a spike in illnesses associated with old age.
Many of us don’t know exactly what dementia is. It is not normal ageing, for one thing. It’s a gradual loss of brain function that affects one’s ability to pay attention, to remember things, to reason, to understand language and so on. Because the onset of disease is slow and gradual, it’s easy to dismiss its early symptoms like forgetfulness as merely part of normal ageing.
Another mistake we make is to generalize all dementia patients, when the illness actually comes in many degrees of severity. Ms Phua cautioned against assuming that all dementia patients are incapable and handicapped.
Joyce Fernandez and her mother Celine were featured in the filmmakers’ documentary Before We Forget, which captures the lives of two dementia patients over the course of a year. Celine has her moments of childlike charm; she beams widely when she was about to be released from the hospital, and at one point spontaneously feeds her daughter a spoonful of food. But she is ultimately a reduced version of her former self, unable to have the conversations she used to have with her daughter. ‘I lost a friend,’ says Joyce.
There is no known cure and so we must cope with it, and learn to live with relatives who have dementia. ‘The government is already doing a lot,’ says Boo. There is a need for us to step in where they can’t. This includes changing our attitudes to have more sympathy towards dementia patients. Ms Phua described how one person was puzzled by the way she would still greet and chat with her mother, whom Alzheimer’s had rendered incapable of recognizing her own daughter. ‘The highest form of love is not conditional’, Ms Phua said. We must care for dementia patients because they are human beings and our loved ones, even if they can no longer love us back in the exact way they used to. Go here for more information on how to care for someone with dementia.
That being said, caring for a dementia patient is difficult, and it is a task that often tests one’s patience. Sufferers of dementia may take out their insecurity, fear and incomprehension on others, sometimes in the form of physical aggression, testing the limits of those who try to care for them. Many have a sense of guilt regarding the way they treat parents or grandparents with dementia. Blogger Gilbert Koh, who uses the online moniker Mr Wang Says So, admitted that there were times he and his family ‘could’ve acted with more patience and love but did not.’ But he tells others going through the same situation not to beat themselves up too much, saying ‘I believe you are all doing the best you can’.
There are many ways to prepare ourselves for an ageing society. Some preparations can be made by employers or the government to reduce the high costs of caring for an elderly relative – for instance, we could introduce flexible work schedules for caregivers who must take time off their jobs, paralleling maternity leave policies. Other preparations can be made by ourselves. ‘In a highly educated nation,’ Boo asks, ‘why are we so ignorant about dementia?’ With one in five people set to be above the age of 65 by 2030, misconceptions and stereotypes about the elderly are things we should seek to change.
Grandmother’s Garden will be available in Kinokuniya stories at $29.90 for the hardback version and $18.90 for the paperback version. The book can also be purchased through Select Books.