Seated in a quiet corner of the community centre, Dr Colin Chong and his wife Joyce Liew seem lost in their own private world. Liew looks tired as she rests her head on her husband’s shoulder. He puts his arm around her and whispers into her ear, smiling as he holds her close. It’s a touching scene, even more so for those who know how devoted Dr Chong is to his wife. Regulars at the Atria Alzheimer’s Community Corner are inspired by how this couple is living with dementia.
“Watching Dr Colin care for his wife is really heartwarming … he’s set some relationship goals for us all to follow,” remarks Dr Leela Koran, a senior lecturer at Universiti Malaya who volunteers at the activity centre in Atria Shopping Gallery in Petaling Jaya. It’s run by the Alzheimer’s Disease Foundation Malaysia (ADFM) for people living with dementia and their caregivers.
Liew developed full-blown Alzheimer’s four years ago, the unfortunate after-effect of anesthesia from a surgery to remove stones from her gallbladder. Her cognitive, behavioural and emotional functions were severely impaired.
“She was already showing signs of forgetfulness before the surgery but I didn’t think it was necessary to tell the surgeon about her memory lapses. But when she woke up after the operation, she was a completely different person.
“Her condition didn’t improve even after weeks. She couldn’t talk any more or do anything for herself,” relates Dr Chong, a chemist who runs his own manufacturing business in Puchong, Selangor.
Liew says a few words, like “yes” or “no” occasionally but mostly she repeatedly utters sounds, which her husband has learnt to interpret. He knows the sounds that indicate her anxiety or discomfort, and those that express happiness.
“When she smiles and makes ‘happy sounds’ … those are the moments that make my day.
“Every night before she sleeps, I kiss her good night and she smiles. She still knows me and that makes me happy,” he shares.
With their three daughters living overseas, Dr Chong became Liew’s sole caregiver. He had to learn to cook, clean, do the laundry – tasks he’d left to Liew, a homemaker, for the 40-odd years that they’ve been married.
He also makes sure that Liew eats and sleeps well (he bought her a wearable device that tracks her sleep) and helps her bathe (she can bathe herself but needs prompts), dress, brush her teeth and even dye her hair.
Because he can’t leave Liew alone at home, Dr Chong brings her with him to his office where there is a bed in a corner for her to rest during the day.
Dr Chong shared his story with a group of about 30 caregivers and people living with Alzheimer’s at a forum for caregivers held a fortnight ago, organised by ADFM to mark World Alzheimer’s Disease Awareness Month which falls in September.
Caregiving is a lot about love but in the case of people with dementia, it is also a lot about loss.
“Alzheimer’s disease is truly the greatest agony. Physically, she is here with me but her mind is fading away. She’s not the person I knew but I am in it for the long haul.
“I try and make sure that she lives as ‘normal’ a life as possible. We go out, we take walks and up until a few months ago, she even followed me to the badminton court and hit a few shuttlecocks. With some coaching, she remembered the strokes as she used to play the game regularly.
“I don’t expect her to change because I know she can’t. Because of her brain disease, she is in her own world. I don’t try to correct her when she says something that doesn’t make sense in the ‘real world’. There is no point.
“But I can change. So, when I am at home, I go into her world. I go along with what she sees and says because in her world, those things are real. But when I go to work, I step back into my real world,” says the devoted husband.
A devastating disease
Dr Chong recognises that his job as a caregiver is somewhat easier because Liew is not incontinent or aggressive, as those in the later stages of Alzheimer’s can be.
“I am not sure I will be able to cope if she is bedridden or if her condition deteriorates,” he shares frankly.
Caring for someone with Alzheimer’s disease can be exhausting, overwhelming and demanding. The disease affects not just the patient but also changes the lives of the people who care for them.
As the disease progresses, different behavioral patterns may begin to emerge – hallucinations, mood changes, incontinence, wandering and aggressive behaviour.
At the forum, many caregivers share their struggles to cope.
One caregiver laments that relatives and family friends stopped visiting her mother, or would talk past her as if she didn’t exist.
“I know she is different from before but she is still here and should be respected. Surely she has feelings, still,” relates the daughter, breaking down in tears as she opens up to the group.
The main challenge in dealing with Alzheimer’s in Malaysia is the lack of awareness about the disease and the stigma attached to it, says ADFM honourary secretary Datin Jacqueline Wong.
According to Alzheimer’s Disease International (ADI), there are about 50 million people worldwide with the disease in 2015: 63% of whom live in low and middle income countries.
The Asia Pacific region has the greatest proportionate increase of people with dementia – by 2050, over 70 million people will be living with dementia in the region, more than half the total global figure.
In Malaysia, the recorded number of people with dementia is approximately 123,000 but Wong estimates that the actual number is about three or four times higher.
“Malaysians perceive dementia as a normal part of ageing instead of understanding that it is a specific condition that needs to be diagnosed, treated, understood, managed and cared for.
“Awareness is important as it determines how we respond to the signs of dementia and get help. It will also help the public understand the disease and respond better to people with dementia.
“Although age is the strongest known risk for cognitive decline, dementia is not a natural consequence of ageing.
“There have been studies that show a relationship between cognitive impairment and dementia with lifestyle-related risk factors such as physical inactivity, tobacco use, unhealthy diets and so on,” says Wong.
Other potential risk factors include social isolation and cognitive inactivity.
Although there is no cure for Alzheimer’s and dementia, public health awareness is crucial so that we can delay or slow cognitive decline or dementia, adds Wong.
Many caregivers talk about being burnt out, not just from caring for their loved one, but watching as their memories fade and their minds slip away.
“I don’t think I am handling it very well. I keep telling myself that she’s not well and that I have to take it all (her erratic and aggressive behaviour) in my stride. I want to give her the best but I don’t know if I can.
“At times, she seems very lucid and then other times, she shouts, screams and behaves irrationally. She repeats herself and I wonder if she’s bluffing me or testing me,” shares a caregiver in her 50s.
Another confides that she badly needs respite – caring for her 83-year-old father has left her frustrated, depressed and sad.
“He used to enjoy having his grandchildren around but now he just snaps at them. He screams and shouts for no reason and I know I shouldn’t get angry or worked up but I do,” she shares.
The forum was facilitated by Universiti Malaya neurogeneticist Dr Azlina Ahmad Annuar, Dr Koran, Wong and DY Suharya, the executive director of Azheimer’s Indonesia, all of whom have had personal experiences of being caregivers.
Caregivers, says Wong, should equipt themselves with the skills needed to care for their loved ones with dementia. And, they need respite.
“The symptoms and behaviour of people living with dementia can be extremely stressful and traumatic to caregivers, many of whom lack understanding and knowledge about dementia.
“The care needs of a person with dementia are also very unique and challenging. Anxiety, paranoia, memory loss and confusion … along with other chronic conditions that often accompany dementia place a difficult emotional and physical burden on caregivers.
“It is a 24-hour job and caregivers, especially women, often have to give up their jobs and to a large extent, their lives, to care for their loved one. Spouses who are likely to be elderly themselves find it difficult to cope.
“It’s no joke and that is why ADFM has training courses and guidance for caregivers free of charge.
“We also have a daycare facility to give caregivers some rest or enable them to go to work without having to worry about their loved one,” explains Wong who left the workforce 10 years ago to care for her father-in-law who had Alzheimer’s, her mother-in-law who had Parkinsons and her husband who was diagnosed with cancer, all at the same time.