The stigma attached to dementia is more harmful than the syndrome itself. Talking about it is still taboo in Malaysia. All the more we need to share the challenges faced by those grappling with it, as well as their care partners, says Peter Bucher, one of the latter.
He had no clue what dementia was about when his wife of almost 50 years, Irene John, was diagnosed with it in January 2020. “Her diagnosis was mild but we’d suspected it already.” The early signs? She was always forgetting where she had placed things.
The former hotelier adds that statistics from the Health Ministry show about 20% of those over 65 in Malaysia have some form of dementia. To learn more, Pak Peter, as he is fondly called, took an online course structured by members of the University of Tasmania, Australia, and many carers themselves. The eight-week Understanding Dementia sessions gave him a deeper understanding of what to expect.
Irene started going to a dementia daycare centre in Ipoh and was assigned to a PhD student working on bioelectronics and brain stimulation. When he completed his programme some months later, she moved to another centre.
Then she was introduced to pottery by a friend and began taking classes every morning. When those sessions stopped in April last year, a fellow student, an artist cum art facilitator, offered to do one-on-one sessions with her at home.
Early this year, both teachers suggested that Irene hold an exhibition of her paintings and pottery pieces. Pak Peter seized that opportunity to celebrate her 80th birthday. A four-day exhibition was held in June, during which workshops on art and pottery were held. Irene sold some pieces of her work and was asked to do a set of six plates before Christmas.
The exhibition was an eye-opener for Pak Peter, 75, who realised a four-day event was not enough to get people talking about dementia. He began sourcing information on villages for people living with that problem and was pointed to the Irish Dementia Café Network (IDCN) by a friend who had quit working to look after her afflicted mother.
The IDCN, set up in 2012, is a network of dementia cafes around Ireland, each of which is run according to a shared set of principles and guidelines. Meetings are organised monthly by volunteers, during which those with dementia and their care partners, family and friends are encouraged to talk openly about what they are going through.
Pak Peter got in touch with the IDCN, which sent him a manual on how to set up a similar café, written by people with dementia and their caregivers. He then asked that his Ipoh group, which has an 11-member steering committee, be accepted as an associate member of the network, which “has been very generous in their support, sharing and motivation”. IDCN said yes, and thus, the first Dementia Cafe in Malaysia came to be. The Bougainvillea City Dementia Cafe is named after the bougainvillea, which was declared Ipoh’s flower in 1988. The next challenge for BCDC was finding a place where members could meet.
“I had two or three places in mind, but it was not easy. We had to consider safety, security, access, steps and the surroundings.” Then he remembered 1 Jalan Lasam, Greentown Ipoh, the corporate office of Kinta Properties.
“I knew its owner, the late Datuk K K Lim, very well as a man who had a soft spot for the arts,” says Pak Peter. He approached Lim’s son, Datuk Lim Si Boon about using Start, the company’s staff café within the building, every third Tuesday of the month, from 10am to 12.30pm.
There is a reason for choosing those hours, he says. Based on his experience, people with dementia need time to get ready before they go out; “no pushing or stress”. Meeting between 9am and noon is ideal because they are fully alert and able to communicate.
Si Boon said yes too, and the BCDC held its first meeting on Nov 15. About 15 guests and five committee members gathered to connect and share their dementia journeys within the warm and cosy Start on the ground floor of 1 Lasam, surrounded by potted plants, floor-to-ceiling glass walls with sunlight streaming in, and a corridor filled with artefacts from the past, among them a trishaw and a three-wheeled ice-cream cart. The café laid out snacks and beverages, making the morning complete.
“If the need arises, we may meet twice a month. We’ll see as we go along,” says Pak Peter.
At home, Irene continues to create art, now using strings and shells. Both her teachers took a three-month break in the summer and her husband noticed the effect of that on her.
“I could feel she was missing the motivation, proof that art has a positive influence. We want that to be the focus of Bougainvillea Café. We want to offer an alternative to the bio-medical approach, which typically involves painkillers, sleeping tablets and tranquillisers. Using art to stimulate and calm those with dementia takes a bit more effort but it’s definitely healthier and much more beneficial.”
Irene echoes that. “I’ve taken a liking to shell work. I never knew I had a talent for it. I follow my imagination on what to do with the shells,” most of which she picked up during the time the couple worked at Tanjong Jara resort in Terengganu.
Irene says that life has been kind to them, although she sometimes still asks, why me? “We are eight girls in the family — how come I’m the only one who has dementia? My sisters don’t believe I have a problem. I tell them I have dementia and they say, ‘But Irene, you have been so active. There’s nothing wrong with you’.”
Some friends say the same thing too, and she has learnt to take things in stride, being thankful for each new day.
“Life goes on and I have started doing all this art. Be gentle and kind to myself. In general, I cope very well. Sometimes I am angry. I get easily irritated and frustrated when things don’t come out right. I talk to plants and flowers, which I think is a great help.
“I like to sit here, where I can look out and see everything around me. The air comes in and I do my work. I like to finish whatever I’m thinking of doing and make use of this beautiful shell,” Irene says, holding one up to share its beauty.
The next Bougainvillea City Dementia Cafe gathering will be on Dec 20, 10am, at 1 Lasam, Greentown Ipoh. For more information, WhatsApp Pak Peter at (019) 574 3572.
This article first appeared on Nov 28, 2022 in The Edge Malaysia.