Break the stigma, create a community that cares for people living with dementia

  • Seniors
  • Friday, 17 Sep 2021

Dementia isn’t a normal part of ageing, it’s a progressive, degenerative disease of the brain that affects an individual’s ability to communicate and think, and affects their behaviour and feelings.

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 would 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. It was 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 stages 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.

It was then that Rodney moved in with his son.

“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, says Anthony whose father has Alzheimer's disease. Photo: FilepicDad is often grumpy because he feels frustrated at losing his independence, says Anthony whose father has Alzheimer's disease. Photo: Filepic

“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.

“I remember when I was young, how dad would look after me in the evening after he came home from work, to give mum a break, so now, it’s my turn to look after him,” he adds.

What is dementia?

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.

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.

Knowing dementia

While most people think dementia only impacts the elderly, honorary advisor to Demensia Brunei and former Alzheimers Disease Foundation Malaysia honorary secretary Datin Jacqueline Wong cautions that the disease also affects those who are younger.

Additionally, those who have recovered from Covid-19 have a likelihood of developing it, she says, referring to recent research which found associations between Covid-19 and persistent cognitive deficits, including the acceleration of Alzheimer’s disease pathology and symptoms.

Wong says that more awareness needs to be raised about dementia so that those who suffer from it can and will access help.

“September is Dementia Awareness Month with the theme ‘know dementia’. It takes the whole of society, especially policy makers, to play a role in helping to counteract the negative effects of dementia, including its symptoms as well as the stigma and discrimination that goes along with it,” she says.

But Wong isn’t just speaking as an expert in the field. She is also speaking from her personal experience as a caregiver. Wong’s late father-in-law was diagnosed with Alzheimer’s disease while her late mother-in-law had vascular dementia and Parkinson’s disease.

Myths and misconceptions

There are many misconceptions about dementia, says Wong.

Contrary to what many people think, dementia doesn’t just impact the elderly, it isn’t a “normal” part of ageing and people who have dementia aren’t necessary "slow" or "stupid", she says.

“Dementia isn’t a normal part of ageing, it’s a progressive, degenerative disease of the brain (when there is damage to brain cells) that impacts an individual’s ability to communicate and think, and affects their behaviour and feelings,” she explains.

“Often, when one mentions dementia, people have a picture of an elderly, dribbling person in a nursing home, mentally incapable of anything, but that isn’t necessarily true. Persons living with dementia can be brilliant, high-functioning individuals. It’s just that that part of their brain is impacted so they exhibit certain symptoms such as memory loss. And some of them are not that old,” she adds.

Wong cites Australian humanitarian, disability rights activist, author, and international speaker Kate Swaffer as an example.

Swaffer, a former nurse, was diagnosed with a rare form of dementia in 2008 at the age of 49. At that time, she was a mature age student studying for a double degree, working, married and a mother of two teenage sons.

“Although she is a high-functioning individual, being diagnosed with dementia led to her losing her job and also her driving licence,” says Wong.

Today, Swaffer, 63, is the chair, CEO and co-founder of Dementia Alliance International, a global advocacy and support group for people living with dementia. She has also won many awards, including 2018 Winner of the Global Leader, Australian Financial Review 100 Women of Influence in Australia, and the 2017 Australian Of The Year in South Australia.

“While persons with other diseases such as stroke are able to receive rehabilitation and return to work, rehabilitation currently isn’t an option for those who have been diagnosed with dementia. There is a lot of stigma and discrimination that affects people living with dementia – even though they may be brilliant and high functioning,” notes Wong.

“Each person living with dementia is unique, so there isn’t one-size solution to fit all,” says Wong.

But there are 10 warning signs of dementia, she says. These are: memory loss that affects day-to-day life, difficulty with familiar tasks, problems with language, disorientation in time and space, impaired judgement, issues with abstract thinking, misplacing things, mood and behavioural changes, personality changes and loss of initiative.

Because of the stigma, fear of discrimination, and embarrassment about being seen or treated differently, many people aren’t willing to get diagnosed or delay diagnosis. Photo: Brandon Chua & Teo Guan NahBecause of the stigma, fear of discrimination, and embarrassment about being seen or treated differently, many people aren’t willing to get diagnosed or delay diagnosis. Photo: Brandon Chua & Teo Guan Nah

Early intervention is key

While there isn’t a known cure for dementia, there are five ways to reduce the risks of developing it, according to the World Health Organisation. These include eating well-balanced diet, exercising regularly, not smoking, reducing alcohol consumption, and staying socially and mentally active.

But, the key to addressing dementia is early intervention, says Wong.

Because of the stigma, fear of discrimination, and embarrassment about being seen or treated differently, many people aren’t willing to get diagnosed or delay diagnosis, and this can impact their chances of getting the help and care that they need, she adds.

Wong says that two of the biggest challenges persons with dementia and their families face are stigma and discrimination.

“Four years after the adoption of the WHO Global action plan on dementia, with a clear objective of raising awareness, stigma and discrimination are still two of the major barriers to people seeking out information, advice, support and even a diagnosis,” she says.

Being diagnosed with dementia can be upsetting both for the person and those around them. Besides feeling fearful about how dementia will impact them and their quality of life, some worry that they will be treated differently, or even badly, says Wong.

“This may result in a withdrawal from social activities and interaction, causing the person with dementia to experience isolation and loneliness. For some, it may result in a delay in getting diagnosed and receiving the care needed,” she says.

The World Alzheimer’s Report 2019: Attitudes to Dementia reported that over 35% of caregivers hid the diagnosis of dementia of a family member.

An accurate, timely diagnosis of dementia is very important, as this can help the person and their family access support and make decisions about their future at an early stage.

Reducing stigma may be achieved through education, awareness on current inequalities, as well as more contact with people who have dementia and their caregivers, so it involves a whole of society approach.

'You may not remember me one day and some days may be harder than others. But for now, all the hard moments are temporary and good moments will become extra precious memories.'  Photo: Brandon Chua & Teo Guan Nah'You may not remember me one day and some days may be harder than others. But for now, all the hard moments are temporary and good moments will become extra precious memories.' Photo: Brandon Chua & Teo Guan Nah

National dementia policy vital

A report by Statistica (Projected Number Of People Living With Dementia In Malaysia 2015, 2030 and 2050) reveals that by 2030, 231,000 persons will have dementia in Malaysia, and in 2050, the figure is likely to reach 590,000.

However, the Malaysia’s National Dementia Action Plan 2020-2030 (NDP) is still pending the government’s approval.

In Nov 2019, Wong was involved in the drafting of the NDP with the Family Health Development Division (BPKK), under the Health Ministry. The proposed plan is in line with the WHO Plan outlining seven action areas: public health priority, awareness and friendliness, risk reduction, health services, caregiver support, information systems, and research aligned with the UN Decade of Healthy Ageing 2020-2030.

“While the Covid-19 pandemic outbreak in March 2020 has resulted in the NDP being delayed, dementia must continue to be seen as a priority and the focus shouldn’t be diluted despite Covid-19 measures that have had to be taken,” says Wong.

“Dementia is also a 'growing pandemic' with no cure, and no vaccine to stop the progress nor slow down the number of new cases,” she says.

Furthermore, the Malaysian population is ageing and the geriatric resources in place aren’t sufficient to cater to it, she adds. A study by University Putra Malaysia (Ageing In Malaysia, 2019) states that there were 2,248,600 people aged 60 and above in 2019, with an increase to 3.3 million in 2020.

Another study (An Analysis Of Geriatric Medicine In Malaysia-Riding The Wave Of Political Change, 2018) reveals that Malaysia has only 39 geriatricians in public and private health facilities, and Terengganu, Kelantan and Perlis do not have even one.

“These studies ascertain that Malaysia needs more geriatricians, geriatric nurses and workforce,” says Wong.

Effects of Covid-19

Recent research reveals that the neurological impact of Covid-19 on the brain can increase a person’s likelihood of developing dementia, as well as accelerate the rate that dementia-related pathological (disease or injury caused) changes develop in the brain, says Wong.

“In Britain, over three million people who have recovered from the Covid-19 infection are now reported as living with long-term effects. A new study out of Oxford found that one in three persons could face an increased or accelerated risk of dementia, as a consequence,” she says.

“It’s vital that people at risk of developing dementia, know about the potential impact of Covid-19 on their brain health, and measures are put in place to protect them,” she says.

Reduced access to healthcare and community care (such as dementia daycare centres) services, disruption of social support networks and increased social isolation and loneliness are just a few of the challenges faced by people with dementia and their caregivers during the pandemic.

During this time, virtual activities and helplines need to be in place to help them and their caregivers.

Dementia carers are more likely to experience higher levels of physical and emotional stress, and this is made worse during the pandemic. A US study (Impact Of Covid-19 On Dementia Caregivers And Factors Associated With Their Anxiety Symptoms, 2021) reports that up to 76.5% of dementia caregivers experience anxiety during the pandemic.

“Data collected from 34 caregivers via semi-structured telephone interviews revealed that over 70% of participants were worried about spreading Covid-19 to the person with dementia, 41% had taken on additional caregiving duties in their family since the pandemic, and 62% had one or more anxiety symptoms,” says Wong.

“Understanding the impact of Covid-19 on persons with dementia and their caregivers would help local policymakers, institutions, healthcare workers, and service providers to make decisions related to care needs,” she says.

Having a policy will encourage the establishing of age- and dementia-friendly, inclusive, inter-generational communities, which youth can be involved with, through volunteerism via school extra-curricular activities, she concludes.

For more information, visit: Alzheimer’s Disease Foundation Malaysia’s website or call ADFM’s Dementia Helpline at: 03-7931 5850

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