Caring for the family caregivers of persons with mental illness

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 needs of the ill member besides meeting the treatment costs. The continuous stress of caregiving may adversely affect the physical and mental health of the caregivers. The stress of caregiving has been labeled as caregiver burden in the literature. The concept was first introduced by Treudley3 in 1946 as the negative impact of caregiving on caregiver's mental health and quality-of-life. The caregiver burden has been described as having two dimensions: objective and subjective.3456 The objective burden refers to the tangible and observable effects of the caregiving on the family such as disrupted family routines, constraints on family's social and leisure activities and financial costs, whereas 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, including Europe, Africa, America, Middle East, and Asia. Almost 80% of caregivers experience burden in the caregiving role.7 Family members affected may include parents, spouses, siblings, and children. It was initially reported with schizophrenia and later with bipolar disorder.7891011 Later, it has been reported in caregivers of patients with obsessive compulsive disorder,121314 severe depression,15 dementias,1617 neurotic disorders,18 substance dependence,19 and somatization disorder.20 The caregivers caring for their patient with mental illness feel stressed, anxious and low, since the illness tends to be chronic and demanding. In the long run, there may occur burnout and emotional exhaustion. The caregivers feel isolated from the society, both due to restriction of their social and leisure activities, as well as the social discrimination and stigma attached to the mental illnesses. Some caregivers may need to look after more than one patient in the family. A number of factors related to caregivers, patients, and illness determine the caregiver burden. These include characteristics of the person with mental illness, characteristics of caregivers, and relationship between them, time spent by the caregiver with the patient and nature and severity of illness.21 The caregiver burden may be seen in all stages of illness. Sometimes, the caregivers have high hopes in the initial phases of illness, which gradually go down. The burden has been reported to be seen with the complete range of symptoms. Some authors have reported more burden with positive symptoms, others with disorganized or disruptive behavior or the negative symptoms (social withdrawal and lack of activity). In general, it is the poor functioning of the patient due to symptoms, which leads to more severe burden. COPING WITH CAREGIVER BURDEN Most caregivers take up the caring role in the absence of any significant knowledge about the illness. The role and demands are incorporated within the regular family responsibilities. The caregivers develop different kinds of coping strategies to deal with the burden of caregiving. A lot of trial and error may be involved in coping. 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. The problem focused coping refers to direct actions, which individual undertakes to change the situation. These include problem solving or seeking social support to resolve the stress of caregiving.22 It is important to understand caregivers’ coping mechanisms for tackling burden, because it affects caregivers’ day-to-day functioning. The burden is a constant source of stress, and how the caregivers cope with it, affects the course of illness. The burden and the coping methods also influence the physical and mental health of the caregiver and hence their further efficacy as a caregiver. The emotion focused coping has been reported to be associated with perception of higher burden, whereas predominantly problem focused and fewer emotion focused coping strategies lead to reduced perception of burden. Caregiver's 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.23 CAREGIVER BURDEN AND COPING IN VARIOUS MENTAL DISORDERS: RESULTS OF A FEW STUDIES FROM INDIA Here, I would like to share the results of the work of my team on caregiver burden and coping. Our prospective study of caregiver burden and coping in bipolar affective disorder (BAD) and schizophrenia924 found that caregivers from both groups suffered similar levels of burden and used a similar pattern of coping. Burden remained stable over a period of 6 months follow-up, though there was an improvement in the severity of illness as assessed on the Brief Psychopathology Rating Scale. Caregivers scored especially high on the burden factors of taking responsibility and physical and mental health. There was a more frequent use of problem focused coping strategies, followed by seeking social support. Avoidance type coping was used the least. Use of avoidance type of coping showed a positive correlation with a number of burden factors such as physical and mental health, caregivers’ routine, taking responsibility and also the total scores in both groups. Caregivers of the married patients generally reported higher burden than those of the unmarried patients. About one-third of the caregivers scored positive on General Health Questionnaire (GHQ). The GHQ scores showed a positive correlation with almost all the burden factors. A positive correlation was also observed between GHQ scores and the use of avoidance coping. A negative correlation was observed between GHQ scores and use of problem focused coping. Thus, caregivers who feel more stressed due to the caregiving role, perceive more burden and also tend to use avoidance coping. Caregivers, who are less stressed in the caregiving role and remain composed, tend to use problem focused coping. Caregivers of patients with somatization disorder and depression have also been reported to experience burden comparable to that seen in schizophrenia.20 Patients with somatization disorder suffer significant disability,25 leading to considerable burden on their caregivers. The burden is seen in multiple domains, including finances, family routine, leisure activities, home atmosphere, and physical and mental health of the family members.20 In the study, disability in the physical domain showed a positive correlation with the burden component of disruption in family activities, suggesting a relationship between the patient's impairment and the increased load upon family members to take up responsibilities once borne by the patient. CAREGIVER BURDEN AND COPING: FINDINGS OF A QUALITATIVE STUDY Most of the research on caregiver burden and coping has been conducted using structured instruments. The concept of caregiver burden and coping is quite complex involving the relationship between caregivers and persons with mental illness, caregiver burden and coping, and their effects on the care of persons with illness. A qualitative approach may better help in understanding the complex relationship of caregiving, burden and coping. An ethnographic description of a case study describing the situations, through which a patient with schizophrenia and her caregivers pass through, has been well-described by Addlakha.26 In a series of focused group discussions (FGDs) with caregivers of patients with schizophrenia and bipolar disorder, we came across multiple themes in the caregiver burden and coping,2728 which are discussed in this section. Caregiver Burden During the FGDs, a number of themes were identified related to caregiver burden. These included nonacceptance of the patient by the society, social isolation, prejudice and stigma, impact on family functioning, financial problems, restriction of various social and leisure activities, financial burden, and adverse effects on health. The caregivers felt that the patient was not accepted by the society and faced a sense of isolation from the rest of society. The father of a young man said, “People stop coming to the house. Even close relatives are reluctant to come.” A related statement from the father of a young unmarried woman with schizophrenia was, “The family has to hide the disease because she is unmarried. If we tell we face in a for Some by the caregivers, as are of the stigma, social discrimination and prejudice by the caregivers of persons with mental illness. Thus, it is not only the but the which this Caregivers generally felt that society does not with persons with mental illness, and understanding of their and A person with mental illness often is for his or her problems, and is by the stigma and prejudice to the caregiver burden. of a person with mental illness affects the family functioning of a person with children are to on because of the their father of a young male with schizophrenia her have to leave one person home for we are all on about for the In the of the of a man with is to do on his has to be to and one person has to remain home only in his care Thus, day-to-day activities of all the family members are including social activities, and day-to-day functioning of the family. of a person with mental illness has also adverse effects on the caregiver's to one of the caregivers, I have to go for some important I am about and remain I A who was married to a woman with schizophrenia affects my work to a great especially she is more A number of caregivers also to to treatment and meeting the treatment were she she and does she to we have to bear with it because we it is not in her with treatment was also a of the need for persons with mental illness stop treatment of to treatment increased the behavioral disturbances and of of symptoms, great stress on the caregivers. Most of the caregivers about the financial associated with caring for the with mental illness. of person with he with all the and after that financial of person with who was the only member of the said, is a financial he is not due to The financial of the caregivers gets further as they are not able to their time to their their Caregivers also about the of caregiving on their physical and mental health. of have one or other of physical were of a person from I that I of or Some of the caregivers had depression and were seeking The adverse effects on health affected their functioning as well as the caregiving for of the patients were especially the elderly caregivers. They were about who would take care of their patient in their no other family members were does not have any for persons with mental illness. The caregivers were using multiple coping strategies, which included positive like for a better and in in and others with a similar problem and taking regular from the Caregivers a range of in their caregiving role from and to and The from time to caring for their Both positive as well as negative were different of a woman with said, have more and more and more to about the disease and and approach and of the patient was a common of caregiving. of the illness as it was caregiver said, are of the that this problem is of and is of Caregivers their experiences with the behavioral disturbances of their patient as she she and her demands are not the person with mental illness can be not by but by and the behavioral as a of illness in coping with it. Caregivers were hopeful of a of a young male with schizophrenia do the and time also pass of person said, are not be in was an important coping by caregivers. Most caregivers felt that one do of taking care of their with illness. with the treatment and leave for was often a source of support. Most caregivers in and that He would help of this situation. Some of the do that he gets well and it me in methods of coping have been reported by earlier Most parents as well as were able to all help to their patient in the caregiving role all the It is important to that the study was conducted in a hospital and the of the caregivers who had been their patients to the hospital and for the Thus, this included a FAMILY CAREGIVERS AND It is for the mental health to identify the burden in the caregivers of the patients they are that they are not adversely affected by it. and would help in this support and The mental health need to take care of the needs of the caregivers and support and as This would help the caregivers to deal with the burden of caregiving using coping strategies and also their caregiving It is a that the caregivers to have more about mental illness, of problem and to be involved in treatment Patients also of caregivers in their Family based have efficacy in relapse and negative impact of on and can negative and the in the caregivers in care to An excellent is the family group taken by Dr. Vidya in and in which the family members would to care for their patient in the This would also the in the of the patients about their family Dr. Vidya would treatment and also group The patients would go to the with a that mental illness can be and hence also the Thus, the of of families in the care of the mentally ill, a the families were as in the The Psychiatric and for schizophrenia also family for families in with patients. A of over a period of months to are The be to the individual families or in a group The with the families may include a to the illness, symptoms, early signs of relapse, available and their of common treatment related costs, burden, and coping in the of patients be and and may be behavioral like and stress may be can be or initially and later once in a of group members may from to of for months have been found to be better than care on including and CAREGIVER In India, most from psychiatric do not any financial from the on of their illness or living in nuclear families are a because in the families used to be and families as well as for the care of with mental illness. In a nuclear it an for the family members to look after the person with mental illness. The of the families with and nuclear families with both working have introduced the problem of load on the family caregivers. a family member gets a chronic mental illness, there is a on the family The caregiver may have to considerable on his or her as to constant care to the family and sometimes may have to leave the further the financial Sometimes, the family due to or and the role of caregiving may be taken by some other such as parents or This a which needs to be by the mental health In the mental illness may be in the background of the Sometimes, a patient is by her and the mother all of support to her ill as well as to her Caregivers of with schizophrenia and are a In this background, more and more families are looking up to the for This further the need for a family based Family caregivers who are in with treatment for a long time to develop coping methods to deal with the burden of caring for relatives with severe mental illness by both experience and with the In the a number of have taken in country both in the as well as the The as well as from the mental health have been in in the toward of the mentally ill and their caregivers. A number of have been working in the area of support to persons with mental illness and their caregivers. Some of include and groups have for persons with mental illness other groups are care different in the Some care have been Health the are the of the There have also been in to for persons with mental In the of with though mental illness was included in the of illnesses for disability there have been a due to various and The of with has the of mental illness for the of various disability refers to a chronic of or which significant impairment in a and to or the to meet the demands and activities of for various including mental illness and mental with more than disability has been introduced in the of The may some to the caregivers. important is the of mental illnesses from the of illnesses for in India, though a in most of the A of or illness, mental disorder, stress or use of or can be found in the of There has been an in the Health to this The has included a for the as “The the to that all for for treatment of mental illness on the as is available for treatment of physical In we have support available for patients with mental illnesses and their caregivers. The society often has an attitude toward persons with mental illness than The and relatives look upon the person with illness and the caregivers. The patient and the family members are often in There is a need to about the mental illnesses and a that most of the mental illnesses can be and the patient can live a nearly in the This would help in the stigma associated with mental illnesses and help of persons with mental illnesses in the society, and in the faced by the There is also need to mental health care which the by patients with mental illness and their caregivers to are for persons with mental illness, who have any family members to look after or the family members are not in a to take care of due to ill health or treatment of mental illnesses is not which is the need of the of disability also needs to be introduced for the persons due to mental illnesses. The has taken some in the Health and in the Health a lot needs to be in this Family caregivers of persons with mental illnesses are a key support system in country as well as in most of the nonwestern world. In the absence of mental health the family caregivers take multiple roles care for persons with mental illnesses. The family caregivers suffer burden as a of the caregiving role and need help from the mental health professionals. It is important for the mental health to identify the needs of the family caregivers, the faced by and as to the burden as well as help in coping