Family caregivers perform a challenging and often undervalued role in society. The HKSAR government and various sectors are responding to calls to elevate the caregivers’ status and give them the practical and emotional support they need. Gary Chiu reports from Hong Kong.
One day during the COVID-19 pandemic, John Leung’s elder brother suddenly went missing.
Fearing the worst, Leung found a suicide note. After a decade of depression and feeling like a burden on his family, his brother had tried to end his own life.
“As a family member, I cannot give up on my brother, but I cannot help getting mad at him too,” said Leung, whose brother survived. “Without the support of my church, I would have suffered burnout.”
This was just one of the many difficult situations that 36-year-old schoolteacher Leung faced as a family carer.
For the past 10 years, 36-year-old schoolteacher John Leung and his mother have sacrificed a lot of time and money to look after his brother, who has suffered from depression for a decade. Their tasks include accompanying him to health checkups and taking annual leave so they could be present for the weekly visits by community nurses
For the past 10 years, Leung and his mother have sacrificed a lot of time and money to look after his brother. Their tasks include accompanying him to health checkups and taking annual leave so they could be present for the weekly visits by community nurses. “He is often reluctant to visit the private counselor and take his medicine when he should. It is very tiring to persuade him,” Leung recalled.
When Leung’s relatives visited, they would make remarks about his brother. “Things used to be fine. How did he get like this?”
“I understand they care for my family, but it piles a lot of pressure on us,” Leung said.
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Leung’s experience offers a glimpse into the extreme challenges faced by many family carers in Hong Kong.
In the worst instances, there can be devastating consequences. For example, in October 2023, a mother in Diamond Hill wounded her intellectually disabled twin sons with a knife, which she then injured herself with. In another shocking case, in March 2022, a daughter needing psychiatric support was fatally strangled by her father in Tai Kok Tsui.
Carers were also the focus of the 2016 Hong Kong movie Mad World, which was based on real cases in the city, in which the character Ah Tung tried to balance the demands of work and having to look after his emotionally unstable mother. Under immense pressure, he killed his mother and was later diagnosed with bipolar disorder.
Tragedies like the real-world examples above illustrate a small part of a bigger issue.
According to 2021 figures from the Census and Statistics Department, there are about 164,000 unpaid carers looking after family members, who include the young and elderly as well as those with chronic diseases and disabilities. The figures only include family carers who do not have a job rather than employed ones.
The Hong Kong Council of Social Service estimated in its 2021 report that there were roughly 1.12 million carers in the SAR, citing government figures documenting the number of physically disabled, elderly and chronically ill patients living with and being looked after by members of their own family.
The council also revealed that carers dedicate a median of 62 hours to caregiving each week. For unemployed carers, the figure was over 80 hours.
But there is not enough professional support and social recognition for carers, according to a 2022 study by the Hong Kong Polytechnic University and the Labour and Welfare Department.
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It is easy to identify carers of the physically disabled or the elderly, but carers of those needing psychiatric support tend to hide their identity to avoid stigma ... Carers have diverse demands. One single measure cannot meet all of their needs.
Lam Ching-choi, chairman of the Advisory Committee on Mental Health and a member of the Executive Council
Given the demand for better support for carers, the Hong Kong Special Administrative Region government implemented a series of measures previously announced in its 2022 and 2023 policy addresses.
In September, the government launched the 182 183 carer support hotline and a three-year publicity campaign called “Care the Carers”. The Information Gateway for Carers website was established in November as a caregiving guide for residents. A pilot program will also be launched to deploy care teams to find out what help carers need before problems spiral.
In the eyes of both policymakers and frontline professionals, more has to be done to address carers’ needs.
“Carers tend to depend on themselves. It becomes one of the difficulties in promoting carer support,” said Lam Ching-choi, chairman of the Advisory Committee on Mental Health, which the government established in 2017 to improve Hong Kong’s mental health policies.
In reality, carers look after people with a wide range of needs, posing another challenge to policymaking.
“It is easy to identify carers of the physically disabled or the elderly, but carers of those needing psychiatric support tend to hide their identity to avoid stigma,” said Lam, also a member of the Executive Council. “Carers have diverse demands. One single measure cannot meet all of their needs.”
He said he believes the government’s measures could go further. For example, creating carer-friendly workplaces could help those carers who use their annual leave to look after others. He also suggested expanding respite services so more carers could take a rest.
Lawmaker Stanley Li Sai-wing, chairman of the Legislative Council Subcommittee on Promoting Carer-centric Policies, urged the government to take the lead in recognizing carers as “unsung heroes”, given that they are key assets of the healthcare system who do much to reduce reliance on public resources
Unsung heroes
Lawmaker Stanley Li Sai-wing, chairman of the Legislative Council Subcommittee on Promoting Carer-centric Policies, pointed out that carers desperately needed mental health support.
In a written reply to LegCo on May 29, Secretary for Labour and Welfare Chris Sun Yuk-han said the carer hotline had received 16,490 calls as of the end of March, with 38 percent requesting emotional support and 23 percent seeking community support services. Care issues and financial problems accounted for about 14 percent and 7 percent of the calls respectively.
Social workers at the hotline assess callers’ needs and provide relevant information, and can make referrals and organize outreach visits if necessary. The Labour and Welfare Department said that hotline operators do not collect personal data such as the ages and addresses of the carers seeking emotional support.
“Over the past two years, the government has focused more on carers, but it is still not sufficient,” said lawmaker Li.
Li said that some business representatives had told him they were willing to support carers, but faced difficulties in identifying those in need. Lee proposed introducing a legal definition of carers as “a form of respect for their status”.
Li urged the government to take the lead in recognizing carers as “unsung heroes”, given that they are key assets of the healthcare system who do much to reduce reliance on public resources.
It is very important for carers to learn to recognize and appreciate their own efforts in looking after their family members.
Linda Lam Chiu-wa, psychiatrist and professor at the Faculty of Medicine, the Chinese University of Hong Kong
He highlighted the importance of a carer-oriented assessment tool to offer timely assistance to high-risk cases and prevent tragedies. “Young carers, not to mention the elderly ones, are struggling to cope with the pressures of caregiving,” Li said.
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Linda Lam Chiu-wa, psychiatrist and professor at the Faculty of Medicine, the Chinese University of Hong Kong, pointed out that some carers were suffering anxiety and depression.
“It is very important for carers to learn to recognize and appreciate their own efforts in looking after their family members,” Lam stressed.
She reminded carers not to neglect their own health as they look after others. Carers also need to learn to relax and try to look for the positives in caregiving as a way of relieving pressure, Lam suggested.
Leveraging resources
To best serve carers, synergy across the social welfare sector is important.
“By leveraging resources and stakeholder networks, we can gather more strength and maximize the support for carers,” said Joe Wong Ngan-chung, service head of community support and care services for the elderly at the Baptist Oi Kwan Social Service (BOKSS).
By leveraging resources and stakeholder networks, we can gather more strength and maximize the support for carers.
Joe Wong Ngan-chung, service head of community support and care services for the elderly at the Baptist Oi Kwan Social Service (BOKSS)
CARE College, a project initiated by the BOKSS in 2019, has been promoting services for seven types of carers, who look after the elderly, physically disabled and intellectually disabled, as well as those with mental disorders, addictions, special educational needs and chronic diseases.
The BOKSS has collaborated with the University of Hong Kong to develop a board game guiding carers through life planning and helping them find a back-up carer for when they need a break.
“Carers lack personal time, shouldering duties as an employee, parent, husband/wife, sibling or son/daughter. They struggle with the conflicts of the role and meeting others’ expectations,” Wong noted.
The BOKSS had partnered with other NGOs to establish the CAREREPS platform, in which carers are given a card that recognizes their status as a carer, and granted access to support services and shopping discounts.
Carers can support each other and learn caregiving skills at the college’s workshops. The BOKSS also organizes workshops for other NGOs and enterprises to promote services and carer-friendly workplaces.
The workshop helped Yolanda Hui, 45, meet the challenges of looking after her mother, who has suffered from schizophrenia for over 30 years.
We, as family carers, need to fulfill our duties unconditionally, but we also need support to keep going.
Yolanda Hui, a carer of her mother, who has suffered from schizophrenia for over 30 years
“Living with my mother was frustrating, as she kept repeating her strange behavior,” she said.
With symptoms such as hallucinations and delusions, the mother had a habit of talking to herself and hoarding in their tiny home, causing tension in the family.
“Back then, no one was aware of the role of carers, making it difficult to seek targeted assistance,” Hui recalled.
Struggling with her caregiving duties and full-time job as a programmer, Hui spent a lot of time and money taking her mother to checkups for other minor diseases. Her schizophrenic symptoms persisted, despite taking her medicine every day. She even went missing several times.
A social worker arranged for the mother to live in a nursing home, while Hui joined a carer support program based on a family-focused recovery model to change carers’ attitudes toward those they look after. Ten themes — including respect, personal strength, and peer support — were emphasized through games, group discussions and peer sharing.
“Carers’ roles are not to ask care recipients to see a doctor or take medicine. Family interaction is about expressing understanding and appreciation,” said Jan Koon Man-wai, the BOKSS social worker handling Hui’s case.
Other than understanding more about psychosis behind her mother’s behavior, Hui learned to appreciate how her mother had made progress in changing herself. “We, as family carers, need to fulfill our duties unconditionally, but we also need support to keep going.”
If you need support:
The following resources are available:
Carer Support Hotline:
182 183
Information Gateway for Carers:
Social Welfare Department Hotline:
2343 2255
Hospital Authority Psychiatric Hotline:
2466 7350
Contact the writer at garychiu@chinadailyhk.com
