Disrupting demetia
September is Dementia Awareness Month and this year’s theme ‘Know dementia’ aims to replace the fear, stigma and shame often associated with dementia, with understanding, empathy and action.
RODNEY Goh is 70 and has dementia, but he isn’t slow or dim-witted. Rather, he’s fairly independent: he’s been living alone since his wife passed away five years ago, up until the pandemic hit.
“Dad was able to drive himself around and look after his own meals. And he used to regularly meet his kaki (friends) who like to hang out at the neighbourhood coffee shop. But he is often ‘forgetful’,” reveals his only son, Anthony Goh, 40.
“Although dad might seem ok to people who don’t know him well, we’ve seen how he’s become more absent-minded in recent years. We’ve also noticed that there are always new dents on his car whenever he returns from his outings,” says the engineer who lives in Petaling Jaya.
Although Anthony was worried, his father refused to move in with him and even declined having a live-in helper because he preferred his “privacy and independence”, says Anthony, who is married and has three children.
Rodney only agreed to move in with his son just before the first movement control order in March last year after “two very serious episodes”.
“One day, we received a call from a stranger who had found my dad wandering around,” says Anthony.
The stranger had found Rodney wandering around in a shopping mall carpark, looking lost when he couldn’t find his car. Concerned, the person brought him to the carpark management office. By this time, Rodney was slightly hysterical, muttering that his car “had disappeared”.
“My father was diagnosed with Alzheimer’s disease in late 2019. He was still in the early stage of the disease and still fairly independent, but there was another episode in early 2020,” recalls Anthony.
Rodney had decided walk to the coffee shop to buy a snack since his car keys had been taken away for safety reasons, but he couldn’t remember where he was going or how to get home.
“My wife and I were frantic. We called the police and even drove around searching for him. Finally, after three hours, he was found by a patrol car, sitting in a neighbourhood playground. He told the police officer he felt tired because he’d been walking for a long time, but the coffee shop was just five minutes away,” recounts Anthony.
Anthony reckons that it was necessary for Rodney to move in with his family.
“It’s safer this way so that we can take care of him,” says Anthony.
But it hasn’t been easy for them as a family.
It also wasn’t easy for Rodney who used to hold a high position in his company, to accept his fate.
He became irritable and withdrawn, and he stopped contacting his friends out of embarrassment and fear that he would be “labelled”.
“Dad is often grumpy because he feels frustrated at losing his independence.
“And the pandemic has made things worse since he’s been feeling cooped up at home during the MCOS,” admits Anthony.
“He’s also unwilling to let other family members or his friends know about his condition.”
It has been almost two years since Rodney was first diagnosed with Alzheimer’s disease.
“Of course we’re sad but we’ve come to terms with the fact that one day in the future, dad may no longer remember who we are.
“Some days may be more difficult than others, but we’re learning new things about caring for him each day. And we’ve tried to look on the bright side and take things one day at a time. At least the MCO has enabled us to spend more time with him while he can still remember us, and we’ve had more activities together as a family,” says Anthony.
Dementia refers to a collection of symptoms affecting memory loss, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. It also leads to a reduction in a person’s abilities and skills in carrying out routine activities such as washing, dressing and cooking.
It is an umbrella term for loss of memory and other thinking abilities severe enough to interfere with daily life.
The most common “types of dementia” are Alzheimer’s disease, vascular dementia (caused by reduced blood flow to the brain which damages brain cells such as from a stroke), fronto-temporal dementia (caused by abnormal clumps of protein build-up inside brain cells at the frontal and temporal lobes of the brain which results in dramatic personality changes and socially inappropriate behaviour) and lewy bodies dementia (caused by protein deposits called lewy bodies in the nerve cells of the brain regions involved in thinking, memory and movement).
The most common cause of dementia is Alzheimer’s disease, which accounts for 60-80% of dementia cases. But, while dementia is a general term for a decline in mental ability (memory, reasoning and other thinking skills) that is severe enough to interfere with daily life, Alzheimer’s disease is one of the causes of dementia, and there can be many other causes.
Understanding the difference, learning about the cause of the type of dementia that an individual has, can empower them and their families and caregivers with the necessary knowledge on how to manage the condition.