Caring for the family caregivers of persons with mental illness

Abstract

Mr. Chairpersons, ladies and gentlemen. I am grateful to the Indian Psychiatric Society for bestowing on me the honor of delivering the DLN Murthy Rao Oration this year. To begin with, I would like to pay my tribute to the legendary Dr. DLN Murthy Rao, the great visionary and an excellent teacher, in whose memory this prestigious oration was instituted by the Indian Psychiatric Society. I would also like to put on record a tribute to Dr. Vidya Sagar, my inspiration, and whose pioneer work with families led to the foundation of family based interventions. This oration is devoted to the family caregivers of persons with mental illness. Family members are the primary caregivers of persons with mental illnesses in most of the nonwestern world. In India, more than 90% of patients with chronic mental illness live with their families.[12] The family caregiver plays multiple roles in care of persons with mental illness, including taking day-to-day care, supervising medications, taking the patient to the hospital and looking after the financial needs. The family caregiver also has to bear with the behavioral disturbances in the patient. Thus, the family caregiver experiences considerable stress and burden, and needs help in coping with it. The caregivers develop different kinds of coping strategies to deal with the burden. An unhealthy coping style is likely to adversely affect the caregiving function. Hence, it is important to take care of the needs of the family caregivers. The family caregiver has remained a neglected lot, often ignored by the mental health professionals. This key support system can’t be taken as granted and ignored by the mental health professionals. This oration focuses on the burden experienced by the family caregivers, their needs and how to help them. To begin with, I would like to focus on some common case vignettes, familiar to most of us. Later, I would be discussing my work in the area of caregiver burden and coping in the background of the available literature. CASE PROTOTYPE I Mr. A, a 20-year-old male student, belonging to middle socioeconomic background, develops schizophrenia. He gets hospitalized in the first episode within 6 months of illness. The response to treatment is not satisfactory. Some of the psychotic symptoms continue. Mr. A is not able to continue his studies. The family which was quite hopeful in the beginning of treatment starts losing hope. Over the period of 2-3 years of illness, the father, the mother and the sister also develop depressive breakdown, not being able to cope with their ward's illness. CASE PROTOTYPE II Mr. B, a 34-year-old unmarried male, living with elderly parents (in late 60s) is on regular psychiatric treatment for the last 7-8 years for an episodic illness. He was earlier diagnosed as bipolar disorder, but later the diagnosis was revised to schizoaffective disorder. Mr. B had been working earlier but stopped due to illness. In a psychotic relapse, he puts his house on fire and attempts suicide by jumping from the roof. Both of his parents also get burns but are successfully treated. AN UNWELCOME RELIEF You have a patient of schizophrenia who has been on your treatment for about 20 years. The patient has continued to be symptomatic and is living with his elderly parents. The patient develops a serious physical problem and does not recover and dies. You feel sad for the patient and the parents, but also relieved. In a country like ours with nearly absent institutional support to take care for chronic mentally ill, one might feel relieved for the sake of the elderly parents, since there would have been no one to take care of the patient after them. These are the growing realities. How to help a patient with severe chronic mental illness? In the background of increasingly nuclear families and poor institutional support, what options do we have? Frequently, we face such questions from the aging parents, who may be the only caregivers. Then there are some patients, who may be living alone? Or the only caregiver is the spouse, who has to earn a livelihood to survive and also has young children to take care of. FAMILY CAREGIVERS AND CAREGIVER BURDEN In India, as well as in most of the nonwestern world, and to a lesser extent in other parts of the world, families have been the mainstay of caregiving for persons with mental illnesses. The family caregivers take care of the day-to-day needs of the patients, monitoring the mental state, identify the early signs of illness, relapse and deterioration, and help the patient in accessing services. The family caregiver also supervises treatment and provides emotional support to the patient. The family caregivers bear with the behavioral disturbances of the ill family members and sometimes can also be a target of the patient's abusive or violent behavior. They have to curtail on their social and leisure activities, and sometimes have to take leave from their jobs. In addition, they have to meet the financial need