Senior Citizens Bill: ‘Who Will Take Care Of Care Partners?’

Care partners caring for parents with dementia, cancer, or gout say the Senior Citizens Bill shouldn’t penalise adult children who send parents to care homes. They want more assistance instead; one had to quit his job in KL to care for his father in Sabah.

KUALA LUMPUR, April 24 – As the government considers drafting a law to support senior citizens, care partners – family members, friends, or professionals who provide assistance and support to older adults – are making their voices heard. 

There are no clear details about the proposed Senior Citizens Bill, which has yet to be tabled in Parliament, but the government recently informed Parliament that the legislation could potentially impose penalties on adult children who send their elderly parents to care centres or homes, an act bizarrely considered by the State to be “irresponsible”.

With a projected growth in Malaysia’s elderly population, care partners argue that the bill is critical to ensure that seniors receive the resources and care they need to age with dignity and maintain independence. 

However, Sharifah Tahir, a full-time care partner to her 89-year-old mother living with dementia, has expressed reservations about the proposed legislation.

Although Sharifah supports the six broad pillars of the bill – which propose to protect the welfare and rights of senior citizens, empower seniors and their families, and establish robust support systems for seniors and care partners – she is concerned about the lack of details and evidence underpinning each pillar.

“There are many unknowns, and a lack of definition and parameters for the terms used. How is ‘irresponsible’ defined? What level and quality of care are we talking about when using the term ‘caring’? Is living at home with the children considered adequate care, considering that one out of 11 older adults above the age of 60 is abused? 

“Furthermore, why penalise sending senior citizens to care homes, when at the same time, care homes are mushrooming?” Sharifah told CodeBlue when contacted.

Despite several attempts by CodeBlue to obtain clarification from Women, Family and Community Development Minister Nancy Shukri about the contents of the proposed Bill, CodeBlue has not yet received a response.

Sharifah highlighted that women are disproportionately represented among informal care partners, which she attributed to the deeply ingrained gender roles and expectations that women internalise from an early age. 

This often means that female adult children will assume the role of care partners, limiting their social and economic opportunities and potentially harming their long-term wellbeing and financial security, Sharifah said.

“Gender sensitivity and equity must be central to any policy and legal instruments,” Sharifah said. “These facts highlight gender inequality and inequities that harm women’s wellbeing, rights and advancement and continuing the cycle of poverty and dependence in old age.”

According to a 2021 study conducted by the Ministry of Health’s (MOH) National Institutes of Health, informal care partners are prevalent in Malaysia, with 5.7 per cent of the adult population providing care for family or friends without payment. The study also revealed that 61.7 per cent of care partners were women.

Another study conducted in 2020 – which focused on caregiver burden among informal care partners of palliative patients or people living with serious illnesses – found nearly 30 per cent of care partners suffered from anxiety, while one in four reported symptoms of depression. 

Caregiver burden has been previously associated with being female, spending long hours giving care, social isolation, and financial constraints, according to previous studies.

Sharifah also expressed difficulties faced by family care partners, who are expected to take on and fulfil a strenuous role without the necessary expertise, abilities, and assistance needed to provide care, including financial compensation.

She argued that the overall lack of support for care partners can be considered exploitation and abuse, with serious consequences for the care partners’ physical, emotional, social, and economic well being. 

“Related, I ask if we can establish a Citizen’s Bill to penalise the government and authorities for inadequate support and protection of children caring for older parents?”

Social Welfare Responsibility Extends Beyond Individual To Whole Society

Jeremy Ang, a 27-year-old care partner, knows first-hand the high level of sacrifice required for the role. 

“From my previous experience as a caregiver for my parent with cancer, I was on call 24 hours a day and almost burned out. Fortunately, my parent’s condition improved after a few months,” Ang shared.

Women, Family and Community Development Deputy Minister Aiman Athirah Sabu’s reply in the Dewan Rakyat last month on the Senior Citizens Bill did not mention providing financial or mental help to caregivers. Instead, her reply indicated that care of elderly parents is the responsibility of adult children – presumably at home – who should be penalised with salary deductions if they send their parents to care facilities. 

“The proposed bill neglects the children’s commitments, such as rent, bills, and parents’ medical fees. It should be more considerate by taking into account the total number of children in the family, the parents’ health condition, and the total income of children,” Ang said.

Ang believes that social welfare, particularly in public health, is not just responsible for one individual but for the whole society. The government should take responsibility and take steps to address this issue, instead of just punishing caregivers, he said.

Caregiving Takes Toll On Finances, Employment Of Care Partners

Sakhril Hairuddin, 28, disagrees with the idea of imposing penalties, especially wage penalties, on care partners. He argues that wage deductions can lead to conflicts between family members and that care partners often do not earn enough to provide care.

“Caregiving competes with employment roles. As a parent and son, I have time restrictions to put myself in both roles. When my mom passed away, I was not married yet, and my father, at that time, who was 51 years old with mild gout, required my care for a year. 

“Most of the time, I had to fly back home to take care of him when his gout aggressively attacked until he couldn’t move. I tried to bring him to KL, but he refused. My father is in Sabah,” Sakhril said. 

The situation ultimately led to him leaving his job as a private banker due to a tarnished reputation from taking too many leaves.

Sakhril is of the opinion that implementing salary deductions may not be a viable solution as it could potentially result in more conflict between family members.

“I believe that 70 per cent of caregivers don’t have enough money to take care of their elderly parents, as we are the sandwich generation. In addition, the conflict between employment and caregiving roles assumes that caregivers like me will work fewer hours, therefore earning less than what we used to earn, and eventually quitting our jobs. 

“Life will become more miserable for the next generation, especially if we end up divorcing since we are demanded by every corner of those who depend on us,” Sakhril said.

Sakhril recommends the creation of a community hub or centre located within a 3km radius of residential areas, where senior citizens can socialise and receive daily or short-term care services from a nearby facility, thereby relieving the pressure on care partners.

“Most old people are lonely and don’t need that much money. I’ve seen Kebun Komuniti manage to help them cope with their loneliness in my neighbourhood here in Shah Alam.”

You may also like