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 (COS) debate on Friday (Mar 5).
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.
Earlier last month, MP Carrie Tan (PAP-Nee Soon) also asked in Parliament if the Ministry of Manpower (MOM) would consider introducing a new financial scheme for full-time caregivers to supplement their income and retirement savings.
READ: 'The role is demanding': How a new resource aims to help caregivers during the COVID-19 pandemic
She said that this is especially important because more caregivers — most of whom are women — will be displaced from the workforce due to the ageing population here and the rising needs of eldercare.
Indeed, the pandemic has starkly revealed significant gaps in community-based eldercare, according to caregivers and industry players 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.
Ms Chua, who was also the primary caregiver for her father before he died, said she previously also struggled with having to take unpaid leave whenever her parents were sick as she had limited annual leave.
The loss or big drop in income is not the only financial headache for caregivers; the other one being the hefty price for respite care that they must pay, literally, if they want to take a break from their elderly charges.
Ms Belinda Seet, whose 89-year-old mother is afflicted with Alzheimer’s, said even as a part-time early childhood studies lecturer, she could not afford to pay between S$20 and S$40 per hour for someone else to take over her caregiving duties so that she can rest.
“Respite care is actually quite expensive for someone who is not working or working part-time,” said the 63-year-old.
Although there are grants to help caregivers who wish to hire foreign domestic workers, Ms Seet said she was spooked by media reports on the mistreatment of the elderly.
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.
READ: Missing items, temper tantrums and life shifts: One woman’s journey in caring for her mother-in-law with dementia
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
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-friendly communities to provide platforms for caregivers and their loved ones to stay active.
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.
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.
Mr Teo Koon Cho, chief executive officer of Active Global Home and Community Care, said about 56 per cent of its clients across home and centre-based services have benefited from grants, with their eligibility based on household means-testing.
For example, at its senior daycare centres in Ghim Moh and Telok Blangah, a client who comes five days a week would get a bill of about S$170 per month after subsidy — which can be fully covered by the S$200 monthly HCG.
Mr Teo added that those who take up their home personal care services and are eligible for the subsidy would pay about S$130 for 48 hours of home care per month, which can also be offset using the HCG. Eligible clients get up to 80 per cent subsidy.
Mr Alvin Lee, deputy head of the community case management department at Fei Yue Community Services, said that there has also been more awareness around caregiver support in recent years, such as support groups and respite care.
The most notable support groups are the ones run by the Alzheimer’s Diseases Association (ADA), he said.
Organisations have also come up with a variety of initiatives for caregivers.
The Caregivers Alliance has a fully-funded 12-week programme for caregivers to learn new skills, perspectives and find support in one another. Similarly, social service agency Montfort Care offers such services under their GoodLife! Programme.
Touch Community Services actively connects residents with one another, equipping them with skills and giving them the confidence to approach and support a neighbour who might be suffering from caregiver stress or depression.
Helplines are also a common offering among agencies and organisations.
Mr Kavin Seow, senior director of the elderly group at Touch Community Services, said the needs of caregivers have deepened and become more complex.
Noting that the demographics of caregivers have evolved, Ms Pee Lay Lay, the lead social worker at Montfort Care, added: “They now have higher literacy, are more internet savvy and are willing to learn and make changes.”
This means caregivers require greater support, resources and accessibility to services that equip them with the knowledge and skill sets to enhance the quality of life for both themselves and their care recipients.
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, from 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, Ms 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 from 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.
Mr Lee from Fei Yue said the cost of respite care is similar to the cost of putting dependents in a nursing home.
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.
Ms Yeo Wan Ling (PAP-Pasir Ris-Punggol), who was previously the chief executive of social enterprise Caregiver Asia, said that while there are efforts by the Government to increase the support to caregivers, many still find the cost and availability of respite services an issue.
“For many sandwiched middle-income families, unsubsidised respite care is a significant cost, and information regarding the support available can be confusing as well,” she said.
Ms Shailey Hingorani, head of advocacy and research for the Association of Women for Action and Research (AWARE), noted that family caregivers incur two types of costs: Direct cost related to caregiving, and cost from having to quit their jobs or take on less demanding and lower-paying work.
In 2019, AWARE released its Make Care Count report which investigated the financial toll that eldercare took on family caregivers. It found that respondents who experienced a change in work situation because of caregiving suffered a 63 per cent loss in income.
This translated to an average loss of S$582,572 over four years, or an average annual loss of S$56,877, said Ms Hingorani.
While there has been some progress in addressing the direct costs incurred, there is still no guarantee that caregivers are compensated for their loss of work.
The Home Caregiving Grant introduced in 2019, for instance, comes with an option for the money to be granted to family caregivers but the decision to compensate the caregiver lies with the care recipient, she said.
According to the AIC website, a care recipient who lacks the mental capacity to make decisions can appoint an individual — called the donee — to make decisions on his or her behalf. If the care recipient does not have a donee, the caregiver may make the application on the care recipient’s behalf.
Industry players 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 Hingorani said the lack of clear information is one reason why many still face barriers in accessing formal care services.
Pointing to AWARE's report, she added that caregivers often shared their frustrations navigating the current landscape of services, which was found to be “extremely fragmented”.
“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.
She noted that AIC only provides information on subsidised services.
While these gaps in the caregiving ecosystem have been a perennial problem, the pandemic has also brought to fore the issue of availability.
Mr Seow said some of the concerns raised by caregivers include the difficulty in employing domestic helpers due to higher costs and travel restrictions.
“They also shared about the long waiting list for subsidised elder sitting services, daycare centres and nursing homes. In such situations, caregivers looked to employers to grant more flexible working arrangements or support access to services,” he added.
MP Cheryl Chan (PAP-East Coast) noted that the capacity constraint in nursing homes and daycare centres, due to the placement of residents over an extended period, can make it difficult for caregivers to leave their family members there for a short-care period.
A "WIN-WIN": TAPPING THE COMMUNITY NETWORK
To increase accessibility, more resource centres could be set up islandwide, proposed Ms Ng Ling Ling (PAP-Ang Mo Kio). She had earlier also asked if the Government would consider expanding the new Alliance for Action, meant for caregivers who look after people with disabilities, so that it covers all female caregivers.
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 said.
On affordability of support for caregivers, Ms Tan proposed having a broader set of care options available within the community, at different price points, and exploring co-living options between different household types.
To increase the availability of respite care, Ms 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.
EMPLOYERS PLAY A PART TOO
Even as the community can seek to provide some solutions to the conundrum, there is a significant role that employers can play too — including integrating caregivers back into the workforce.
Mr Teo noted that a scheme in South Korea trains and pays family members to deliver care to their own family.
This could be implemented in Singapore as a scheme to professionalise caregiving as a career and tackle the manpower challenge that the sector has been battling, he said.
This also allows the caregiver to remain in the workforce after the ward dies. Employers can also do their part to offer more support for working caregivers.
AWARE's Hingorani said that there are currently no statutory requirements for companies to provide paid leave for caregiving for family members who are not the employee’s children.
She noted that according to the MOM, only 20.3 per cent of companies offered paid family care leave in 2018.
She also welcomed initiatives such as the Matched Retirement Savings Scheme, which can help caregivers attain retirement adequacy. Under the scheme, a contribution must first be made by CPF members or their family members before the Government matches it.
But family members who are poor may not be able to contribute to one another’s accounts to benefit from the scheme, Ms Hingorani added.
READ: Disease, isolation and neglect, the aged lives of quiet desperation you don't see, a commentary
Labour MP Melvin Yong said prior to the COVID-19 pandemic, caregivers with young children or elderly parents often had to make the difficult decision to choose between caring for their loved ones and to outsource these caregiving duties and continue working.
“Those that choose to become informal caregivers are often disadvantaged in their retirement adequacy as they are unpaid, or face immense challenges returning to the workforce once their caregiving needs end, as they have a long gap in their resume,” he added.
However, the pandemic has caused a fundamental shift in the workplace culture, with many companies committing to make working-from-home and flexible work arrangements a permanent policy post-pandemic.
This acceleration in the working from home phenomenon presents an opportunity to tackle these key issues that informal caregivers face and encourage more employers to adopt flexible work arrangements, said Mr Yong, who is also the MP for Radin Mas.
“This will allow caregivers to concurrently work and care for their loved ones, without having to make the difficult decision to choose one over the other,” he added.
For more news like this, visit todayonline.com.