Caring With You, a non-profit care centre for people with dementia, is on a mission to change the way we look at nurturing those with the condition. Co-founder Deidre Low speaks to Priya Kulasagaran about the realities of being a caregiver, and the need for more compassion
“We only realised that my mother had an illness when she lost a whole car; this was in late 2011,” says Deidre Low. “After meeting with doctors, and having her take a memory test, they told us that she had dementia. It was then we realised that her forgetfulness was something monumental.”
In the coming three years, Low watched her mother, a sharp and articulate former teacher, slowly lose her memory and sense of time. “Although she was already in her 70s, she thought she was 50-years-old. She didn’t recognise the house she was living in, kept looking for my father who is deceased, and wanted to visit her parents who are long gone. This was when the aggression came about. And then, we lost her for an entire day — by some blessing, some Samaritans found her looking lost on the street and managed to get her back to my sister’s house (where she lived),” shared Low.
In 2014, Low quit her job in Singapore and came back home to help care for her mother. “I did tell my employer here that my mother had Alzheimer’s disease, so if I have to leave work and go home to her, I just have to; and I have had to call on that allowance many, many times,” she says. In her confused state, Low’s mother has not only broken door locks, but has even called the police saying that she had been ‘held captive’.
Meanwhile, Low did not recognise her mother as the logical and intelligent woman she had always known. “I would frustrate her and myself by trying to reason with her,” explains Low. “My sleep was affected, my mood was affected, and my friends were sick of me moaning and groaning – this went on for 18 months. Then, a friend (whose parent also has dementia) said, let’s do something about it. Let’s try to learn how to cope with this. So we did.”
What Low and her friend, Sharon Chia, did was go on a fact-finding mission to Perth, Australia, visiting one of the daycare centres set up by Alzheimer’s Australia. After five days of gaining some insight into the disease, as well as how to care for people who have it, Low and Chia returned to Perth on a second trip to immerse themselves in further training. “They taught us ways of caring, diffusing tempers, and how to use activities to help them — and we found the techniques working,” says Low.
“But we soon realised that we were still missing out on social engagement; we (as caregivers) had helped ourselves to be less frustrated, but we’re not really helping them. So I went around Petaling Jaya’s nursing homes to see what was available; and I realised I couldn’t leave my mother in those homes. Yes, there were activities, they were occupied, but the people with dementia were not engaged, they were not getting their self-esteem back.”
So Low and Chia went back to Perth once again late last year; this time, to learn how to set up a care centre themselves. As they were figuring out the nitty-gritty of establishing a centre, the pair also happened across an approach to caring for those with dementia. “It’s called the Spark of Life approach, because it puts back the spark in your eyes,” says Low. “And that’s what we’re trying to do now here at Caring With You.”
Realities of dementia
Located in an unassuming bungalow in Bukit Damansara, the Caring With You, Dementia Enrichment Programme Centre is a non-profit that seeks to offer a person-centred approach to caring for those living with dementia. The centre provides two and a half hour sessions of activities twice a day, facilitated by several full-time staff as well as volunteers who run classes such as Pilates and music therapy. Low, who still works full-time as an accountant, comes in twice a week to help with sessions herself.
“We do still have to charge to help cover the costs. We charge RM90 per session and we can only accommodate a maximum of 12 people for each session,” says Low. “Our hope is that once we can show that this is sustainable, we can get more help to open another centre. There are so many people dealing with this, and more needs to be done.”
Dementia refers to a range of symptoms associated with a progressive decline of the brain’s function and thinking abilities. This includes memory loss, and difficulties with problem-solving and language. According to Alzheimer’s Disease International (ADI), there are over 100 forms of dementia, with Alzheimer’s disease being the most common type. In Malaysia, the ADI estimates that some 123,000 were living with dementia in 2015, and expects the number to rise to 590,000 by 2050. Despite this rather significant number of people with dementia, there is not enough discussion about how we can deal with its effects.
Low stresses that one of the biggest misconceptions about dementia is that it is part and parcel of ageing. “We know of many older people who are still active and lucid — my aunt is 87-years-old and she still drives!” she says. “It’s a real condition that unfortunately affects some people.”
She adds that, as with other conditions affecting mental health, stigma is another reason why some may not admit that their loved ones have dementia.
“When I go to a restaurant with my mother, I’ll quietly ask them to serve her food cut up in smaller pieces. It’s such a joy when it arrives, because she doesn’t have to feel like she needs my help to eat her own food; it gives her so much self-esteem. And it’s because I don’t feel ashamed to tell others that I need their help,” she says.
While studies have shown that keeping the mind active can help lower the risk of developing dementia, the sad fact is that this is not a bulletproof method. Illustrating this, Low shares that her client list includes former teachers, chief executive officers, professors, and doctors; hardly the type of people who would let their minds be idle.
“It’s true that we should challenge ourselves to learn continuously, but once a person has shown signs of dementia, no amount of Sudoku or crosswords can help. There is no cure for the condition, but with the right care and social engagement, we can help patients get back that spark they had,” she says.
Focusing on the person instead of the disease
Caring With You’s approach is to use activities, such as painting or singing, as a way of helping clients not only exercise their cognitive and physical abilities, but also engage with other people. “Take Scrabble; we don’t bother about even making words, but rather just getting them to put the tiles on the board. They might just put all the ‘S’ letters together in a row, but it doesn’t matter. Instead, we might encourage them to observe the curve of the letters, or the sensation of just putting those tiles together,” explains Low.
The centre also breaks up clients into groups based on their level of dementia, from mild to severe, and further groups them by their interests as well. “We also use a lot of praise, because they’re craving for acceptance,” adds Low. “It’s really about giving them their self-esteem back; they may not have insight into their condition, but they still have emotions and they can sense that something is not right. With my mother, I can see the light coming back into her eyes just from having this acceptance. She doesn’t talk about wanting to die any more, or about being a burden.”
Low admits that it is not easy being a caregiver as it is a role that requires a significant amount of patience. “But you have to take a deep breath, and think of something that you remember of your loved one that they deserve this love from you. For me, it was how much my mother did to help me as a single parent with my children. I think of what she has done for me, and it’s much easier to not lose my temper and give her love instead,” she says.
Low adds that she tries to help other caregivers give this support as well. “It’s a journey all caregivers have to go through, learning that patience,” she says. “So it’s about learning to diffuse their aggression and bring them to a calm mode. It’s also hard for Asians of certain generations to be demonstrative of their feelings; to them, looking after a person with dementia is just nurturing them physically with food and shelter. But you need to let them know that you love them.”
Echoing this need for compassion is the centre’s care manager Muhammad Mujada Rosli. “There are two options when you’re faced with someone with dementia,” he says. “You can either just watch them get progressively worse and let them be, or you can help them make the most of the time they do have. The typical scenario when you go to a home, is that you just see them sitting and blankly watching the television. Here, we want to focus on the social interactions between people; when you watch them smile or be engaged, it’s the best feeling ever.”
Muhammad Mujada’s journey to being a caregiver was driven by a desire to serve others. Formerly a corporate employee with a bank, Muhammad Mujada unexpectedly found himself working with older adults when his family temporarily moved to Scotland. “My wife was studying there, so we moved with her. While looking for some extra work to fill up my time, I started a job at a care home. Once I was there, I felt like I needed to learn more to be good at my job, so I got myself certified as a caregiver. When we came back home in January, Caring With You was looking for people to help set up the centre, so here I am!” he says.
As both of his parents have passed on, he adds that being a caregiver is his way of giving back to society. “This is my service, I feel like this is something I can do to help other people’s parents at least by giving them some joy,” he says. “Getting the paper qualifications to do this work is easy, but the real work is having the patience and compassion to put those ideas into practice. At the end of the day, what we want to do here is treat our clients the way we ourselves want to be treated — with respect and dignity. It’s putting the person first, and dementia second.”