The latest survey by India’s National Institute of Mental Health and Neurosciences (NIMHANS) found that nearly 150 million Indians are in need of mental health care services, but fewer than 30 million are seeking care. One out of every seven people in India suffer from major mental health ailments. Schizophrenia, bipolar mood disorder, dementia and substance use disorders are the major mental health disorders, and these come along with social stigma.
Persons with mental illness (PWMI) most of the time don’t have an insight into their problems in the way that persons with physical illnesses do. A PWMI mostly doesn’t seek help or take medications. Hence, this increases the stress and responsibility of family members, or caregivers.
Caregiver is defined as “a family member, who has been staying with the patient for more than a year and has been closely related with the patient’s daily living activities, discussions, and care of health.” Family members are the primary caregivers of persons with mental illnesses in most of the Eastern world. In India, more than 90% of patients with a chronic mental illness live with their families. The family caregiver plays multiple roles in the care of persons with mental illness, including taking day-to-day care, supervising medications, taking the patient to the hospital and looking after financial needs. Caregivers often have to sacrifice their own wants and undergo a lot of stress — plus, they are generally disregarded. Thus, the family caregiver experiences considerable stress and pressure, and needs help in coping with it. This stress is termed the burden of the caregiver. Family members affected may include parents, spouse, siblings and children.
The caregiver burden
Rakesh, 32, was a marine engineer, working in a gulf country. He had schizophrenia. During his active symptoms, he would feel that his wife was changing into something monstrous. In the Gulf Rakesh and his wife stayed together without any other family members. She had managed to take him to a psychiatrist for treatment, after which he became all right. However, after a year his symptoms increased; believing that his wife was changing into a monster, he tried to strangle her. Caregivers thus bear with the behavioural disturbances of ill family members and sometimes are also targets of the patient’s abusive or violent behaviour.
The caregiver burden has two dimensions: subjective and objective. The objective burden refers to the observable effects of caregiving on the family, such as disrupted family routines, constraints on family’s social and leisure activities and financial costs. The subjective burden includes the caregiver’s negative appraisal of circumstances such as feelings of loss, guilt, shame and anger.
The caregiver burden is a universal phenomenon, reported from all over the world. Almost 80% of caregivers experience burden in the caregiving role. Caregivers caring for their PWMI feel stressed, anxious or depressed, since the illness tends to be chronic and demanding. In the long run, there may occur burnout and emotional exhaustion. Caregivers feel isolated from society, both due to restriction of their social and leisure activities as well as the social discrimination and stigma attached to mental illnesses.
As a mental health professional, I feel it is important to help alleviate the burden on caregivers. Caregivers can express a wide range of emotions in their caregiving role, ranging from concern and confusion to frustration, fear, sadness, grief, anger, resentment and guilt. Emotions can also vary from time to time while caring for their relative. Both positive as well as negative emotions are reflected at different times.
Helping caregivers to cope
Firstly, it’s important to acknowledge the emotion in the caregiver: “Oh, yes I do understand what a tough time you are having. It’s natural to feel as you are feeling.” Then, we can help the caregivers to identify and accept their own emotional reaction: confusion to clarity, concern to compassion, anger to acceptance and fear/ frustration to faith. Slowly you can develop a caring attitude in the caregivers; but you need to understand their coping mechanisms.
The coping strategies can be broadly grouped into two groups — emotion-focused and problem-focused. The emotion-focused strategies aim to diminish the negative emotional impact of the stressor, and include avoidance, denial, fatalism or looking to religion. This coping usually has a question — “Why?” It becomes part of the problem.
The problem-focused coping refers to direct actions, which the individual undertakes to change the situation. These include problem-solving or seeking social support to resolve the stress of caregiving. This coping usually has a question — “How?” It becomes part of the solution. Hence, the emotion-focused coping reports a higher burden, while problem-focused coping reports a lower burden.
Caregivers’ positive evaluation of their coping strategies is associated with reduced distress levels and positive attitude toward the patient (independent of symptoms and levels of burden). Problem-solving coping has been reported to be associated with better functioning.
It’s important to make the caregivers active members of the treatment plan; in our hospital, first we psychoeducate the caregivers. The psychoeducation sessions with the families may include a brief introduction to the illness, presenting symptoms, early signs of relapse, available treatments and their efficacy, safety of treatment, common side-effects, treatment-related costs, identifying burden, and coping methods. We explain them the available modality of treatment and help them to choose the better treatment plan.
We also conduct group sessions for the caregivers where they meet each other, and get help in understanding the problems of caregiving and working out effective solutions. As all of them are sailing in the same boat they feel a bonding and a sense of acceptance. They also try to understand one another’s pain, and share mutual help and support. Many emotional negative reactions like frustration, sadness and anger can be reduced in intensity by just sharing their thoughts in the group. These caregivers slowly develop faith, compassion and hope. They start helping others, and this helps them alleviate their own negativity.
Dr Shailesh Umate is a consultant psychiatrist, sexologist and addiction specialist, whose mission is spreading awareness about mental health and well-being