The Big Read in short: Answering the silent cry of caregivers

Each week, TODAY’s long-running Big Read series delves into the trends and issues that matter. This week, we look at the predicament of caregivers and what can be done to better support them. This is a shortened version of the full feature,​ which can be found here.
 

• In greying Singapore, it is estimated that there are more than 210,000 caregivers — many of whom have had to compromise their careers, finances and even their own health to look after their ill or disabled loved ones
• They have seen their stress levels climb to an all-time high during the Covid-19 pandemic
• But their plight has not been forgotten, emerging as a recurring theme during the Budget debate in Parliament last week
• Despite strides made in providing greater support for caregivers, there are still significant gaps, say industry players and Members of Parliament 
• Some suggestions include tightening service referral processes for struggling caregivers and creating a community network of respite care providers

 

SINGAPORE — At his wits’ end, Mr Danny Raven Tan, 53, once threatened his dementia-stricken mother with a chopper because she was “driving him nuts”.

Since she was diagnosed with the illness that causes impaired intellectual functions and personality changes in 2015, his mother, who is now 88, would tiresomely ask him about his father and godmother, both of whom had died, frequently raise her voice at him and accuse their helper of stealing her money.

“At that time, I didn’t know anything about dementia and it was eating me up,” said Mr Tan, who quit his full-time job in marketing to be the primary caregiver for his mother and now runs an art gallery.

In 2018, Mr Tan founded Enable Asia, a platform that focuses on dementia awareness and respite for caregivers. 

While Mr Tan has found support through the platform, homemaker Fadilah, who declined to give her full name, was pushed to the brink caring for her 86-year-old mother-in-law with Alzheimer’s disease during the circuit breaker period from April to June last year. 

Alzheimer’s disease is a progressive form of dementia that destroys memory, thinking skills and the ability to carry out simple tasks.

One day, already drained from cleaning up after her mother-in-law had just soiled herself, Madam Fadilah was about to feed her lunch when the elderly woman swiped the bowl of porridge from her hand and called her “stupid and useless”.

“I controlled myself because I didn’t want to cry in front of my children (who were working at home at that time). I keep telling myself that I am not stupid and useless and that she would not say those words to me if she was well,” said the 57-year-old. 

The mother of four children aged between 27 and 38, then impulsively swallowed a handful of her mother-in-law’s Alzheimer’s medication that was used to temporarily ease symptoms and keep her calm. 

“I ended up sleeping from 4pm that day till the next morning,” recalled Mdm Fadilah. “I felt so tired and I was just ‘gone’ all night. My husband thought I had fainted and almost called for an ambulance.”

Mdm Fadilah and Mr Tan are not the only ones in such a predicament. In greying Singapore, it is estimated that there are more than 210,000 caregivers — many of whom have had to compromise their careers, finances and even their own health to look after their ill or disabled loved ones. 

Caring for an invalid elderly demands a lot from the caregivers even in the best of times; in perilous times it gets worse. 

As the Covid-19 pandemic continues, confining many to their homes for long periods, caregivers have seen their stress levels climb to an all-time high — from having to manage difficult behaviours of their aged parents to thinking of ways to keep them occupied.

But the caregivers’ plight has not been forgotten, emerging as a recurring theme during Parliamentary sittings in recent years, including during the Budget debate last week and the Ministry of Health’s (MOH) Committee of Supply debate on Friday.

During the Budget debate for example, five Members of Parliament (MPs) spoke on how caregivers here often experience burnout and struggle with mental and physical health issues due to the stress incurred from their responsibilities. 

They also pointed out the significant gaps in community-based eldercare, despite the Government’s big push for it in recent years amid the rapidly ageing population.

Likewise, during MOH’s COS debate, several MPs called on the Government to do more to support caregivers in the time of Covid-19, including reviewing and updating its Caregiver Support Action Plan unveiled in 2019.

Indeed, the pandemic has starkly revealed significant gaps in community-based eldercare, according to caregivers and industry players TODAY interviewed. They singled out three key pressing issues in the caregiving ecosystem: Accessibility, affordability and lack of awareness.

STRUGGLING WITH INCOME LOSS, HIGHER EXPENSES

Many caregivers are often unprepared to take on the responsibilities as they are usually forced to assume the role overnight. 

Some struggle with the loss of income as they leave their jobs to become full-time caregivers or the pay cut that comes with working fewer hours as they opt for a more flexible work arrangement. 

After her father died of cancer in 2017, Ms Jasmine Chua thought she could strike a balance between caring for her 84-year-old dementia-stricken mother and working part-time as a clinic assistant, even though she was often running low on sleep as the elderly woman kept waking her up at night to chat. 

But it was not her mother’s nocturnal habit or the lack of sleep that prompted Ms Chua, 49, to quit her job soon after; it was the toll that caregiving had on her former domestic helper.

“Once I caught her almost throwing a stool at my mother because she was so frustrated. That’s when I knew I needed to step in. “I told myself either I earn money and watch my mother’s condition worsen or I don’t earn money but I help her get better,” she said. Since she quit her job, her five married siblings currently provide financial support for her and their mother.  

Caregivers in the middle-income bracket are not spared from financial worries as well, especially those living in landed property since they may not be eligible for subsidised elderly care. 

One such caregiver is Mr Henry Koh, 43, who had taken a significant pay cut when he quit his decade-long job as a behavioural therapist and opted for a flexible work arrangement as a consultant.

The primary caregiver to his 76-year-old mother and 95-year-old grandmother – both suffering from dementia – said the pandemic took a big toll on his finances as patients were cutting back.

The father of two children, aged eight and 10, added: “In my case, because we live in a landed property, the subsidy we get for daycare would be affected.”

Among the grants that he tapped to ease his financial burden is the S$200 Caregivers Training Grant, administered by the Agency for Integrated Care (AIC), to offset the cost of caregiving training courses each year.

There are also other grants available, such as the Home Caregiving Grant (HCG), which provides caregivers with a S$200 monthly cash payout to defray caregiving expenses, such as the costs of eldercare services or hiring of a foreign domestic worker. 

To be eligible for the HCG, the care recipient must be means-tested to have per capita household monthly income that is S$2,800 or less, or belong to a household with no income and living in a residence with an annual value of S$13,000 or less.

STRIDES MADE IN RECENT YEARS BUT GAPS REMAIN 

In 2019, MOH and partner agencies rolled out a Caregiver Support Action Plan.

Some of the initiatives include expanding Medisave funds to cover the healthcare expenses of siblings who are Singaporeans or permanent residents, and growing caregiver support networks across dementia-friend

There is also the Community Mental Health Masterplan, introduced by the AIC and MOH, which aims to make it easier for persons with mental health to seek early treatment and to promote early identification of mental health conditions, among others.

As Singapore ages at a faster pace and people live longer, the Government has over the years strengthened support for caregivers through its policies, tapping technology and beefing up community resources, noted industry players TODAY spoke to. 

The Government’s efforts are complemented by social service agencies and other organisations on the ground. 

Other key touchpoints for caregivers to access resources are through the respective healthcare providers and community care facilities.

While strides have been made to help caregivers here, there remains an urgent need to address the “3As” — accessibility, affordability and awareness, said industry players and MPs interviewed. 

Mr Teo Koon Cho, chief executive officer of Active Global Home and Community Care, pointed out that there is a segment of people who might not have access to subsidies due to the type of property they live in. 

“For example, people living in private properties may not be eligible for subsidised care but in reality, they may be asset rich but cash poor and could also be requiring long-term care,” he said.

There are also caregivers on the fringes who do not know how or where to seek support as they are not exposed to the system, said industry players. 

Mr Teo said these caregivers’ charges may not have been hospitalised before and referred to community care, or attended regular check-ups at the polyclinics. Thus, the caregivers may not come into contact with social workers who can help them.

“In such cases, they may not have any exposure or awareness about their eligibility and available care options,” he added. 

Echoing the same sentiments, Nee Soon GRC MP Carrie Tan said many stay-home caregivers also do not step out of their homes often except to do grocery shopping or taking their loved ones for medical appointments.

“They tend to have quite limited social circles and little time outside their homes for social interaction with others. This renders them rather hard to reach, or (makes it difficult) for information about support to reach them,” she added.

Ms Pee Lay Lay, the lead social worker at Montfort Care, said that when seeking support, caregivers will also learn about the other options they have, such as respite care if they need a break from caregiving.

But industry players and MPs pointed out that respite care is not affordable for many, especially for caregivers who have no income.

According to the AIC website, respite options are available to caregivers at senior care centres, nursing homes and at night for sundowning patients — where persons with dementia experience behavioural difficulties towards the end of the day.

Prices for night respite varies according to the provider but the estimated cost is about S$80 to S$130 per night before subsidy. 

Meanwhile, respite options at nursing homes range from S$100 to S$150 a day while those at daycare centres, depending on the care recipient's condition and services required, range from S$400 to S$1,700 per month before subsidy. 

The rate at nursing homes is calculated daily, with the option available for a minimum of seven days per stay, and up to 30 days per year. Those with a household income of less than S$2,600 per capita may qualify for subsidies.

Industry players also reiterated the need for more awareness of the support available for caregivers, especially when the various schemes offered by the Government and different agencies get constantly updated.  

Ms Shailey Hingorani, head of research and advocacy for the Association of Women for Action and Research (Aware), said the lack of clear information is one reason why many still face barriers in accessing formal care services. 

“For a caregiver trying to find the best service for their care recipient, the onus is on them to seek out all available services and try to do a cost-benefit analysis on what works best for their situation — but there is no existing platform that compiles information on all types of services and providers,” said Ms Hingorani, who noted that AIC only provides information on subsidised services.

.embed-container { position: relative; padding-bottom: 56.25%; height: 0; overflow: hidden; max-width: 100%; } .embed-container iframe, .embed-container object, .embed-container embed { position: absolute; top: 0; left: 0; width: 100%; height: 100%; }

A ‘WIN-WIN’: TAPPING THE COMMUNITY NETWORK 

To increase accessibility, more resource centres could be set up islandwide, proposed Ms Ng Ling Ling, an MP for Ang Mo Kio GRC. 

To increase outreach, the referral process for caregivers across care nodes can also be strengthened, especially between acute hospitals and primary care providers, Ms Ng said. 

“If doctors or nurses notice that caregivers are struggling with the care of their loved ones, there should be a process that allows them to refer the case to AIC so that the care consultants can advise and work with relevant social service agencies to develop a care plan that best suits the needs of caregivers,” she told TODAY. 

To increase the availability of respite care, East Coast GRC MP Cheryl Chan suggested that neighbours living nearby can volunteer their time to care for individuals at their homes if they are unable to or unwilling to go to another person's house. 

A residents’ network facility could also be opened to allow caregivers to send their elderly family members there for a few hours, she added. 

In a similar vein, Ms Yeo called for the creation of a community network of respite care providers. 

“For example, providing in-community micro-jobs to allow women, who are looking for jobs near their homes, to provide respite care services and thus, be able to earn extra income, thereby creating a win-win situation for all,” she said.

Through such a network, caregivers can have easier and quicker access to the service without having to go through the typical formal applications which tend to require a longer lead time for approval, added Ms Yeo.