In recent years, efforts to prioritize mental health have gained ground. There is growing recognition within the international community that mental health is one of the most essential, yet neglected, development issues. In 2015, it was recognized as a health priority within the global development agenda and included in the United Nations’ Sustainable Development Goals. Since then, governments and civil societies across the world have taken significant measures to promote mental well-being, prevent mental illness and protect the human rights of persons affected by mental health conditions. We have also witnessed a shift from the traditional biomedical approach to mental health that once promoted institutionalized care — to a community-based model of care that has proven to be more effective in meeting the needs of persons living with mental health conditions.
The move away from institutionalized care to community-based care has also brought to light the challenges faced by those providing care and support to people affected by mental health conditions. As we work to foreground the rights and needs of those living with mental health conditions, it is imperative we must also prioritize their caregivers, who often face burnout and fatigue in providing said care. In an effort to provide the best possible care for a family member or friend, they often sacrifice their own needs.
“On Pins & Needles,” a research study conducted by the National Alliance for Caregiving (NAC) in 2016, collected data from 1,601 adult caregivers who provided care to a friend or family member with a serious-to-moderate mental health condition. The study found that “a typical mental health caregiver provides an average of 32 hours of care per week, as well as a 9-year caregiving journey.” Caregiving, therefore, exacts a toll on the caregiver: a significant number of caregivers — 62% — reported that caregiving-related tasks had made their own physical health worse. According to the Anxiety and Depression Association of America, 40% to 70% of caregivers showed symptoms of depression. Another Iranian study found caregivers faced various forms of prolonged emotional distress including anger, anxiety, sadness, isolation, and guilt. Other challenges reported by caregivers in the study included not being able to meet the needs of their care recipients, burnout, exhaustion, high social stigma, low social support, and overall low quality of life.
A research study published in the Indian Journal of Psychiatry in 2014 found that social isolation, mental health prejudice, and stigma had an adverse effect on caregivers’ health. Some reported that “… people stop coming to the house. Even close relatives are reluctant to come.” Others shared that one person had to always stay at home with the person who needed care and support — resulting in the caregiver’s exclusion from social activities. A few shared that their levels of distress were so severe that they struggled with suicidal ideation: “Sometimes I become so frustrated that I think of killing myself.” This combination of stigma and isolation has grave and urgent implications on caregivers’ well-being.
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Caregiving not only impacts the physical and mental health of caregivers but also generates financial stress. About 45% of caregivers reported their care recipient lived with and was financially dependent upon them. Caregivers thus shoulder a tremendous load of meeting the financial, physical and mental health needs of their care recipients. Furthermore, caregiving roles are dictated by gendered social norms. Research indicates that women account for more than half of all caregivers within the age group of 25-54 years, who bear the responsibility of caring for family members living with mental health conditions. Ironically, although caregivers have taken a load off the public healthcare system, and facilitated the deinstitutionalization of mental health care services — their own wellbeing and needs go unaddressed.
These research findings emphasize the need for additional services and support for mental health caregivers. Adequately meeting the psychosocial needs of caregivers will enhance the quality of care that persons living with mental health conditions receive. Peer-based support has proven to be quite effective in alleviating isolation and stigma that many family caregivers experience. Because caregivers find it difficult to converse with others regarding their care recipient’s mental health condition and what it takes to care for them, they can benefit from having access to other caregivers facing similar experiences. Caregivers’ support groups — a peer-based form of support — enable caregivers to gain insight from the challenges and successes of others in similar circumstances.
Schizophrenia Awareness Association (SAA), a mental health organization that runs a day-rehabilitation center in Pune for persons living with schizophrenia, provides support to caregivers of those living with mental health conditions who access the center. Care takes the form of one-on-one counseling, peer-support groups, felicitation events, knowledge sessions, and capacity-building. Caregivers also benefit from access to SAA’s day-care facility which enables them to pursue a livelihood and meet their own needs. SAA recently hosted an All India Conference of Caregivers’ of Persons with Mental Illness (CAME), attended by 150 caregivers from across the country. The conference focused on the challenges of caregiving and gave caregivers an opportunity to share common concerns, caregiving practices and subsequently learn from each other. Organizations that provide services to persons living with mental health conditions must similarly include psychosocial interventions for caregivers as well, for the two will always be intricately connected and interdependent.
