IPOH, Dec 16 – For most people, 2020 will be remembered as the year Covid-19 took over the world. But for Peter J Bucher, fondly known as Pak Peter, it was the year his wife of almost 50 years, Irene John, was diagnosed with mild dementia.
Dementia is a general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life.
Alzheimer’s disease is the most common cause of dementia, accounting for 60 to 80 per cent of cases, according to the Centers for Disease Control and Prevention (CDC) in the United States.
Other types of dementia include vascular dementia – a decline in thinking skills caused by reduced blood flow to the brain – and lewy body dementia where clumps of proteins called Lewy bodies build up in the brain, affecting a person’s ability to think and reason.
“When Irene was first diagnosed with dementia, I had no idea what it was,” Bucher, 75, told a small group of patients and caregivers at the Bougainvillea City Dementia Cafe in Ipoh here, a project he leads to bring people with similar experiences together.
“I had to learn what it was all about.”
Bucher, a Swiss-born retired hotel manager, said he first signed up for Zoom online courses made available during the pandemic by the Alzheimer’s Disease Foundation Malaysia. But the content was too “academic”, Bucher said, delivered mostly by physicians and professors.
He was then suggested by a friend, a senior nurse, to an open online course offered by the University of Tasmania in Australia. “The course was about understanding dementia, and that was okay for me. I liked the way they teach.”
Bucher said the “biggest difference” was that all senior lecturers from the university who were involved in the online course had direct or indirect dealings with dementia. It was during this 8-week programme that Bucher was introduced to Christine Bryden, an advocate for people with dementia. Bryden was diagnosed with early-onset dementia at the age of 46.
She had a career as a biochemist and had served as advisor on science and technology to the Australian prime minister. Bryden’s condition has progressed remarkably slowly, allowing her to provide vivid accounts of her experiences with dementia.
She has written several books, including “Dancing with Dementia” and “Nothing About Us, Without Us”, which became sources of inspiration and motivation for Bucher who sought non-biomedical alternatives to maintain Irene’s cognitive abilities for as long as possible.
“Dancing with Dementia” later became the title of Irene’s first art exhibition held in June earlier this year. Irene, 80, is a former nurse. She has taken pottery and art lessons from Alice Ng and Ng Sook Peng, two local art teachers, as a way to keep her brain stimulated.
Encouraged by the public’s response to Irene’s four-day exhibition, Bucher soon came up with the idea of setting up a dementia cafe in Ipoh, Perak, a northern state with the oldest population in Malaysia, in hopes of further raising awareness of the disease.
The Bougainvillea City Dementia Cafe in the state capital city of Ipoh is built based on the model used in Ireland, Bucher said. Meetings are held every month by volunteers in a cafe setting where people with dementia, their families and friends, health and social care professionals, as well as members of the local community can come to interact and learn more about dementia.
For two hours in each session, attendees can learn from caregivers and health care professionals on the different aspects of dementia and caregiving, and share their insights.
“If we start talking about it, maybe the decision-makers will start recognising dementia as a public health issue,” Bucher said at the dementia cafe’s first gathering on November 15. About 10 to 15 people, both dementia patients and caregivers, were in attendance.
Sessions are held every third Tuesday from 10am to 12.30pm.
Caregivers As Legal Guardians
Among those present at the first meeting was Monica Lee (moniker), 51, whose father was diagnosed with dementia. Her parents live in Ipoh, but Lee is based in Hong Kong.
“I thank Pak Peter for creating this cafe to create awareness and to try and remove stigma.
“I think at the heart of why a dementia diagnosis is so difficult to accept is because of the loss and grief that comes from that reality, and certainly, I’ve experienced that in my own family,” Lee said.
“No one was aware of my father’s condition. It wasn’t apparent to us as caregivers, along with my care partner, my mother, who could not really accept that there was something wrong with my father except for forgetfulness.
“And we all have that. I forget things. But is that dementia or is that memory loss? Or is it just ageing or just getting older – and there’s a fine line between all those scenarios.
“I think being aware, of course, of what dementia actually looks like is important for people around us, for loved ones to assess whether their loved ones are just having a bad day, or is it going down the path of what might mean that more serious challenges are coming.”
Lee, a lawyer by training and profession, said one of the most important and useful things she did when she first discovered that something was amiss with her father was to look into his financials and legal matters.
“When I had a suspicion about my father, we had a discussion and I made sure that he granted something known as ‘power of attorney’ because as you know, someone who is suffering from dementia does not have the legal capacity to sign documents and make certain decisions for themselves.
“Unless that part is given to someone positive to make those decisions and sign on their behalf, it could become extremely difficult in the later stages when that person no longer has that capacity,” Lee said.
Lee had early conversations with both her parents not just on legal arrangements, but also about their possessions and ascertaining their wishes in terms of their preferred type of care should the need arise.
“We had a discussion about what sort of legal arrangements should be in place. I was given the power of attorney, not without my father’s acknowledgement, it was explained to him, but that power of attorney has proven to be very, very useful when you’re running around trying to do things for them. Banks and government authorities, they want signatures,” she said.
“So having that discussion very early on, ascertaining their wishes, not only their properties but for their long-term care in the future when, if this were to happen, what are your wishes for the rest of your life? Is it independent living? Do you mind going to a home? Do you want to have a look at certain kinds of care that you might want?
“There are some really nice, fancy nursing homes here (in Ipoh), that if I were to, I would think, ‘Oh this is okay, I could probably deal with that’.
“But if you don’t have the opportunity to explore then you don’t actually know what your elderly loved ones want, especially if they are incapable of making those wishes known at a later point, especially once they have dementia.
“I think by doing that, at least, as a care partner, I know what their desires were when they were able to articulate it, and then I can help to execute that to the best of my ability.”
Faces And Phases Of Dementia
Another attendee at the gathering was Irene, a 51-year-old physiotherapist. She spoke about her hands-on experiences with dementia in her family, in her previous work at a rehabilitation centre, and now, as a house call physiotherapist.
Irene was a mother of two young children working at a government hospital when she received a call from home one day, informing her that her mother-in-law had taken off in a taxi to a nearby shop.
“In my neighbourhood, everybody knows everybody. She (mother-in-law) gets in the taxi with someone she trusts. She will call, and the taxi man will come and take her wherever she likes. She will go to the regular store and buy something.
“One day the maid called me, ‘Ma’am, amah sudah keluar sendiri.’
“At that time, I was a working mom in a government hospital, so I could not commit my time to take care of her. But fortunately, there was a dementia centre in Kuala Lumpur we could send her to, so we got support there. That was my first time dealing with a dementia patient.
“Then, later on, I moved on from being a government servant to a rehab therapist at a centre for stroke, which is my special interest.
“During the stroke sessions, no doubt I deal with stroke patients but I found out that many of them have dementia symptoms. Some got it due to stroke, the frontal lobe is affected.
“At that centre, I deal with 30 to 40 stroke patients a day. We also ran classes for patients, not just exercises. So we will do nasi lemak cooking sessions, yoga, and one of the classes they enjoyed most was art. They can spend hours doing art therapy.
“Sometimes we would take them out on trips. We’ll have 30 people on the bus to Penang and Melaka. But they like it, you know, because they are always cooped up at home and they don’t have people to talk to and all their children are very busy,” Irene said.
As a freelance physiotherapist now, Irene said she became aware that many people in the community are living with dementia. “Some as early as 50 years old,” she said.
“It’s very sad to note that some of them, their caregivers, are in denial. Some are ignorant or they don’t know what’s happening. They’ll say that the patient’s memory is very good. But it’s always the long-term memory that they can remember.
“Other caregivers will say, ‘She understands, she understands.’ They’ll say, ‘Ma, this Monday I’m going to buy you chee cheong fun, ah?’ And the mother will respond, ‘Mmm’. Is that how you say she understands you?
“Why don’t you have an open question where instead of ‘I buy chee chong fun, ah?’ I asked the patient, ‘Aunty, what did your daughter just say?’ She looked at me in a blurry state. ‘She wants to buy chee cheong fun for you. Do you know chee cheong fun?’
“It can be very difficult to deal with patients who have dementia. They can become very childish. It’s like our brain going back to those days when we were learning all these basic things. It’s not easy for me, and definitely not for the caregivers,” Irene said.
“By joining this dementia cafe, my hope is to learn and share.”
The next Bougainvillea City Dementia Cafe gathering will be held on December 20 at 10am at 1 Lasam, Greentown Ipoh. For more information, contact Pak Peter at 019-574 3572.