Home care in Singapore: who cares for the caregivers?

In the field of mental health we confront so many unmet needs. We experience them personally or we observe them with compassion and wonder what to do. Changemakers are individuals for whom the problem becomes a calling. Unstoppable, they find what they need and they build some missing piece of the solution. Mental Health Changemakers is a series of interviews with individuals and grassroots organisations who work at the intersection of vision, practical skills and determination. These are the people whose innovations give us those eureka moments: yes, of course!

Janhavi Vaingankar is the Deputy Director of Singapore's Institute of Mental Health, the only psychiatric hospital in the city-state of Singapore. That geography gives her an unusual opportunity to research locally and implement nationally. In culturally complex Singapore, Janhavi asks how culture shapes people's access to, and experience of, seeking help for their mental health needs. Her research also explores the challenges and rewards of caring at home for family members who are living with mental health disorders.

Can you start by telling me a bit about your professional journey?

I joined the Research Division of Singapore’s Institute of Mental Health (IMH) in the year 2004. Until then, most of my experience was in the field of pharmaceutical research and development. My first few projects in Singapore were among people with psychosis, depression and anxiety, where I had the privilege of learning from some of the leading mental health researchers such as Professor Chong Siow-Ann, Senior Consultant Psychiatrist and Adjunct Professor Mythily Subramaniam, Assistant Chairman, Medical Board (Research), IMH.

With the launch of the first National Mental Health Blueprint (NMHB) by the Ministry of Health in 2007 to provide a holistic approach to supporting Singapore’s mental health needs, my journey in this field truly took off.  As the NMHB was being formulated, we realised that there was a need for an epidemiological study to get information on the local population’s mental health. I transitioned from being a person merely supporting mental health research to one co-designing landmark national studies on mental disorders and positive mental health in the local population. Over the last 15 years, we have pooled rich information on the mental health status of Singaporeans. My current research which is also the focus of my PhD in Public Health, dwells in the concept of youth positive mental health where I am gathering unique perspectives from young Asians—and uncovering that there is yet a lot to learn.

One of the things I want to understand is the role that culture plays in the decision to seek help, and maybe also in the experience of receiving help. That's a very general question, but how have you approached it?

The decision to seek mental health aid is often determined by an individual’s knowledge, attitudes and practices towards help-seeking; which in turn are rooted in socio-cultural norms and behaviours. What people from different cultures understand as being the causes of mental health problems, what they define as 'acceptable' behaviours, and how much they attribute these (negatively) to personal traits or deficits; all this influences their acknowledgement or perceived stigma attached to such experiences. Naturally, the higher the stigma towards mental health problems, the poorer will be their contact with mental health services.

Despite improvements in mental health literacy in the last decade, compared to Western populations there remains some level of hesitation and stigma in Asian communities towards mental health problems and aid. Based on a survey, the Mind Matters Study, conducted among 3000 adults in Singapore; openness to seeking and value in professional help varied across different ethnic groups. This study found that Chinese adults were more likely to have positive attitudes towards seeking mental health aid, compared with their counterparts.

Moreover, in collectivist societies like Singapore, preferred sources of aid may tend to differ. Our research showed that ‘talking to friends and family’ is the most common source of help in Singapore. Thus, cultural setting plays a large role in pathways and reasons for seeking or not seeking mental aid.

In recent years, have you seen any positive shifts in the way that mental health is perceived within Asian communities? If yes, can you tell me what brought about these shifts in perception?

The gains in positive perceptions towards mental health in Asian settings are as yet marginal, but promising. We have seen beneficial trends in people willing to come forward to seek treatment for mental health problems. The Singapore Mental Health Study, done by IMH, found that over the period of 2010 to 2016, treatment gaps for key mental health disorders, such as major depressive or alcohol use disorders, reduced by about four percent in Singapore. 

While the figures might seem small, taken in the context of entire national populations, we can expect more acknowledgement of their condition and willingness to get treated among Asians. The reasons for this shift could be multifold. Global events ... have resulted in mental health gaining focus in national policies in the Asia-Pacific region.

Compared to a decade ago, more individuals are seeking help for their mental health needs from non-traditional and alternative sources.  It is now quite common to find mental health services such as counselling being provided by several religious organisations as well. In addition, exposure to online mental health content and global trends in mental wellness via social media could be linked to better mental health literacy and/or lower stigma, particularly among the young. All of these have culminated in some positive trends among Asians. Everyone, including governments, communities, and families now has a part to play to keep up this momentum.

What would help to make Asian societies more accepting of people's mental health needs?

The short answer is to increase literacy and reduce stigma around mental health. Very importantly, these must be designed and implemented in the context of local and cultural norms, beliefs and practices. Asian societies are a plethora of races, religions and cultures; eeach unique in their respective ways. But I believe the one common feature each has is the relevance allocated to collectivist or group behaviour. That can be used as a tool to promote awareness and acceptance of mental health problems. Having appropriately trained mental health professionals who are mindful of the cultural practices would help in connecting with the masses more effectively.

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Janhavi Vaingankar is the Deputy Director of Singapore's Institute of Mental Health.

Why is there a shift away from institutional care, towards community care in providing support for persons with mental health problems?

It is a well-acknowledged fact in public health that health resources are finite and often fragmented. While most institution-based mental health services can meet the treatment needs of persons with mental health problems; their physical, social or vocational issues may not be well addressed. Community care thus serves as a viable solution for the provision of integrated services, where individuals can seamlessly access professionals with diverse skills and specialities. Research has shown that individuals receiving community care often report better quality of life, perceived social support and satisfaction with services.

To quote such programmes in Singapore, the Agency for Integrated Care offers an integrated mental health network for persons with mental health problems, to support and enable them and their caregivers to live well in the community. Other IMH-based services such as Community Health Assessment Team (CHAT) and Response, Early Intervention and Assessment in Community Mental Health (REACH) that specifically cater to youth in the community also help with early detection and intervention.

It's interesting that, even in a society as small and dense as Singapore, you still speak about the fragmentation of services. I guess that's a global reality. Your research often enquires into the family and friends who are caregivers of persons with mental disorders. Why did that become one of your focus areas, and what kinds of issues do people face while caring for their loved ones?

Informal caregivers often face several challenges while caring for their loved ones. While these are not restricted to caregivers of people with mental disorders; high stress, psychological and emotional distress, poor social support and physical strain are common occurrences.

Many informal caregivers, in particular caregivers of people experiencing psychological problems for the first time, have limited information about the condition or available treatments. One of our projects, the Well-Being of Singapore Elderly study, identified a range of unmet information and educational needs among informal caregivers of people with dementia. For example, caregivers lacked information about what to expect as the condition progresses, medication side effects or how to manage crisis situations at home. This uncertainty adds to their stress and burden, causing poor health and wellbeing among informal caregivers. Moreover, their challenges could be compounded by experiences of stigma towards mental disorders, guilt or frustrations, which are significantly higher among caregivers of people with serious mental disorders such as psychosis. Informal caregiving for a loved one with mental health problems can thus be a highly demanding role.

You write about caregivers' quality of life in your research. What factors affect the quality of caregivers lives?

Research indicates that high care burden, low resilience and coping skills, and poor physical, emotional and financial health affect caregivers' quality of life. These are often a result of family strife, stigma, social isolation, social exclusion; and lack of information, social support and rest among other factors.

Are there rewards to enabling a loved one live at home and manage their health amongst family? Given the challenges, do people become caregivers solely out of a sense of family obligation, or are there also rewards?

How people react to supporting their loved ones living at home with illness is quite subjective. When people care for a family member with health problems, there is a simultaneous process of emotional ups and downs, and personal evaluation of satisfaction with their life as a caregiver. Family members having a positive appraisal of caregiving, and those who feel supported, are not only able to find purpose and cope with their new role and responsibilities but also grow from the experience and benefit.

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Institute of Mental Health is the only psychiatric hospital in the city-state of Singapore.

What needs to change, if societies are going to provide better support for people who are caring for relatives or friends who live with mental health disorders?

In my opinion, it is essential to have adequate avenues for emotional, social and physical support for informal caregivers. Addressing stigma towards mental health conditions in the community is equally necessary as much of the hesitation to seek help, psychological strain and frustration experienced by caregivers can be attributed to their perceived stigma. Psychoeducation and training relevant to specific mental health conditions would also help alleviate uncertainly among caregivers and empower them.

What advice would you give to people whose loved ones are experiencing mental health conditions?

Rather than advice, I would like to say to all caregivers and family members of persons with mental health problems that I know they have been having a tough time trying to juggle multiple responsibilities, personal responsibilities and making sense of things when situations and symptoms of their loved ones change. Every one of them has their own set of issues and circumstances and no one piece of advice will fit everyone. I would just like to encourage them to find their warm place, person, thing or activity that gives them strength. And not lose faith during tough times in their trusted circles, be it their families, friends, neighbours, therapist, religion or online communities. Be willing to open up about their struggles and find validation. Believe that the person they loved is still there, appreciates their efforts at some level and will get better with support. Lastly and very importantly, be mindful of their own mental health and boundaries.

How have you, personally, cared for your mental health during these tumultuous couple of years?

Finding meaningful connections, managing stress through deep breathing and hydration, being flexible with my goals and expectations, finding joy in little things and self-validation—basically, these have been my mantras for the past two years.