IT felt unnatural to speak to her mother in soothing tones, to placate rather than reason with her.
But changing the way she communicates was crucial in Deidre Low’s efforts to adapt to the changes in her 84-year-old mother, Choy Wor Yeng, who was diagnosed with Alzheimer’s disease in 2014.
Low, 57, quit her job in Singapore to return home to Kuala Lumpur to care for Choy, but she did not anticipate the effects of dementia on her mother’s personality.
A successful career woman, Low was initially confident she could manage her mother’s care with “common sense and logic”. But after two years, she was overwhelmed.
“Mum was aggressive; we were constantly fighting and I was really run down. That’s when a very good friend of mine stepped in. She told me, point blank, that my moods were so bad that I was either going to die or kill someone. She insisted I get help and learn how to care for my mum. She organised a “study trip” to Perth, Australia, last year so that I could visit dementia centres there,” shares Low.
The exposure trip changed the way Low looked at dementia. At the centres, Low noted that the patients were calmer and not agitated, even though they all had the same cloudy look her mother wore.
“It opened my eyes completely. I attended a course for caregivers and learnt about the person-centred approach in dementia care. One of the things I had to learn was the right way to speak to a person with dementia, which was not natural at all. I also had to learn what not to say and how to distract the patient (if something was upsetting her),” shares Low.
Applying what she learnt had a huge impact on her mother.
“We started developing a good bond. She was less aggressive because I was nicer to her. She too became nicer to me,” says Low.
Despite their progress, Choy’s geriatrician urged Low to start a “small social group” so her mother could interact with others.
“He told me that I was doing a good job building my personal relationship with her but mum still hated the maid and her nurse. I needed to help her socialise and interact with other people,” shares Low.
Once again, Low went to Perth. With the help of Alzhiemer’s Australia, she learnt how to become a facilitator of a care centre.
Low set up the Caring with You Dementia Enrichment Centre in Bukit Damansara, Kuala Lumpur, this April where she applies the “person-centred” approach to dementia care.
There are morning and afternoon sessions, and clients are scheduled based on their backgrounds and interests so that they “get along” and can participate in activities that they enjoy doing.
“We take a maximum of 15 people per session and we have three to four caregivers facilitating the sessions. In just six months, they have made friends, formed cliques and are participating more in the sessions,” says Low.
When memory disappears
Dementia is the deterioration of a person’s cognitive ability; it can range from mild impairment to Alzheimer’s disease. Some people with dementia lose their short-term memory and repeat themselves a lot. Some hallucinate, become irritable, angry or lose their inhibitions in public. Some are aggressive, others are violent. And some exhibit all these symptoms and more.
But they have one thing in common: as the disease attacks their brain, their personalities change. They may become more childlike or really angry.
Despite the harsh symptoms, doctors and trained or experienced caregivers believe that dementia does not take away a person’s humanity. The challenge for the dementia patients’ loved ones is to find different ways of connecting with them. Low cites their experience with a client, a retired piano teacher who stayed clear of the piano at the enrichment centre, insisting that she’d lost the ability to play.
Instead of forcing or cajoling her to try, Low decided to try her hand on the instrument.
“I sat at the piano one day and began playing with just two fingers. Hearing me, she slowly came over to tell me my playing was horrible. I told her I wanted to learn and she took over and started playing Twinkle Twinkle Little Star by ear.
“When she heard the others clapping, she felt empowered. It gave her confidence and made her happy. She may not remember this but the effect of that experience will stay at least for a while,” says Low.
Recognition and empowerment are the two cornerstones of the person-centred approach.
Caregivers are taught to look beyond the illness; instead of dwelling on what the person with dementia cannot do, they focus on his remaining abilities, his personality, life history and past interests.
“Their short term memory may be affected but they remember the past with amazing accuracy. Some can even tell you the name of their teacher in Year One of primary school,” says Low.
Understanding the triggers and symptoms of the disease is important too but it isn’t everything, Low explains.
“It is about caring for the person with dignity and respect, treating them as individuals and building their sense of worth. We make their caregivers fill us in with as much detail about their parents as possible – all about their past, what they did for a living, hobbies, family history and also their interests. What are his favourite books or TV shows? We need to know as much as we can about them – not just their current behavioural characteristics.
“We then design activities based on their interests. Of course we aren’t perfect… if they like knitting, we can’t have an activity with knitting for just one person. But surely they have other interests like music or art or games, which are common with our other clients,” Low explains.
Although confusion is a common symptom of dementia, patients are still able to make simple choices. Allowing them to make decisions will empower them.
“We need to let them have a say in what they do or at least make it seem like they do. Don’t confuse them with a lot of choices but let them decide between two things: would they like to eat rice for lunch or spaghetti? Would they like to wear the blue shirt or the white one? Would they like milo or tea? It is important to give them that choice,” says Low.
A different reality
Caregivers also have to adapt to the dementia patients’ altered reality and perceptions.
One of the most common mistakes caregivers make is trying to reason with their demented loved ones, as they would any normal person.
“Never, never tell them they are wrong about something because their reality is different from ours. Don’t expect them to come back to your world… we have to try and get into their world.
“Don’t ask if they remember something because they won’t. If they talk about a deceased person as if they were alive, don’t correct them. You can distract them by asking more about the deceased and how they met … things from the past but don’t correct them. This will only confuse them or set them off,” cautions Low.
Low’s centre has only been open for six months but she has already noticed positive changes in at least half of their 32 regular clients.
“Those who didn’t talk are talking, those who didn’t like to be touched are now initiating touch and those who didn’t sing are singing. They are all craving attention. Their caregivers have told us that they are happier, argue less at home and are friendlier. They are happy and so are we. My mother too has a spark in her eyes once again and we don’t argue any more,” says Low.
One of the stumbling blocks to helping someone with dementia is the stigma around the disease which prevents them from seeking a diagnosis.
“There are so many causes of dementia and some are correctable. It is a mistake to assume that nothing more can be done (once a person is diagnosed). Seek advice early and not when the person’s behaviour become intolerable and unacceptable … it is too late by then, like fighting a fire rather than nipping it in the bud,” says Univeristi Malaya consultant geriatrician Prof Dr Philip Poi.
In Malaysia, about 5% of those above 65 suffer from dementia. It is estimated that by 2020, there will be about 100,000 elderly people with some degree of dementia. And this, says Dr Poi, is a conservative estimate.
Low reveals that 60% of her clients have not been medically diagnosed with dementia, adding that many shy away from seeking a diagnosis because of the stigma about the disease. Even though there is no cure for dementia, early diagnosis can make all the difference, says Dr Poi.
“Doctors depend heavily on caregivers. We try to educate caregivers and help them understand the underlying disease so they don’t react to the person with dementia (PwD) the wrong way. Many believe the PwD is “acting (out)” and so they become irritated and scold the patient.
“Of course, trying to get the best from someone with dementia is a real challenge and requires the patience of a saint. But caregivers must realise that scolding a child or normal adult will usually work but a PwD has lost the ability to retain information. They cannot learn. Scolding just heightens their anxiety and insecurities, which leads to depression or aggression,” adds Dr Poi.
Contact Caring With You centre at 03-2011 1806