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.[1,2] 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 Treudley[3] 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.[3,4,5,6] 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.[7,8,9,10,11] Later, it has been reported in caregivers of patients with obsessive compulsive disorder,[12,13,14] severe depression,[15] dementias,[16,17] 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 schizophrenia[9,24] 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,[27,28] 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 anyone, we will face difficulty in finding a suitable match for her.”

Some statements by the caregivers, as given above are clearly depictive of the stigma, social discrimination and prejudice experienced, even by the caregivers of persons with mental illness. Thus, it is not only the patient, but the whole family, which faces this problem. Caregivers generally felt that society does not sympathize with persons with mental illness, and lacks understanding of their limitations and problems. A person with mental illness often remains unappreciated, is frequently blamed for his or her problems, and is misunderstood by the general public. Social stigma and prejudice added to the caregiver burden.

Presence of a person with mental illness affects the family functioning adversely. For example, wife of a person with BAD said “the children are unable to concentrate on studies because of the problems their father created.” Mother of a young male with schizophrenia expressed her problems as, “We have to leave one person at home for him when we are away. We all keep on worrying about him for the whole day.” In the words of the wife of a man with schizophrenia, “He is unable to do anything on his own. Everything has to be told clearly to him, and one person always has to remain at home engaged only in his care only.” Thus, day-to-day activities of all the family members are affected, including children's studies, adults’ daily chores, social activities, and even day-to-day functioning of the family.

Presence of a person with mental illness has also adverse effects on the caregiver's occupation. According to one of the caregivers, “If I have to go for some important work, I am always worrying about him, and remain tense till I come back home.” A businessman who was married to a woman with schizophrenia commented, “It affects my work efficiency to a great extent, especially when she is more disturbed.”

A number of caregivers also referred to maintaining adherence to treatment and meeting the treatment expenses. Comments were like, “Whenever she stops treatment, she loses temper and does whatever she wants to do. But we have to bear with it because we know it is not in her control.” Noncompliance with treatment was also a major concern. Because of the need for long-term treatment, persons with mental illness many times stop treatment out of frustration. Nonadherence to treatment increased the behavioral disturbances and risk of exacerbation of symptoms, posing great stress on the caregivers.

Most of the caregivers expressed concerns about the financial strains associated with caring for the relative with mental illness. Wife of another person with BAD said “Once he ran away with all the jewelry, and after that our financial position got worse.” Wife of another person with schizophrenia, who was the only wage-earning member of the family, said, “There is a major financial problem, whenever he is not earning regularly due to illness.” The financial situation of the caregivers gets further aggravated, as they are not able to devote their time to their job, affecting their earnings.

Caregivers also expressed concerns about the effect of caregiving on their physical and mental health. Statements like, “All of us have developed one or other kind of physical problem,” were common. Brother of a person suffering from BAD commented, “Sometimes I become so frustrated that I think of either killing him or myself.” Some of the caregivers had developed secondary depression and were seeking treatment. The adverse effects on health affected their functioning as well as the caregiving role.

Concerns for future of the patients were common, especially among the elderly caregivers. They were worried about who would take care of their patient in their absence, when no other family members were available. Unfortunately, India does not have any long-stay, aftercare homes for persons with mental illness.

Coping Methods

The caregivers were using multiple coping strategies, which included positive emotions like compassion, hope for a better future, and developing faith in God, participating in religious practices and helping others with a similar problem and taking regular guidance from the experts.

Caregivers expressed a wide range of emotions in their caregiving role ranging from concern, confusion, frustration, fear, sadness, grief, anger, resentment, and guilt to hope, caring, compassion, sympathy and love. The emotions varied from time to time, while caring for their relative. Both positive as well as negative emotions were reflected at different times. Husband of a woman with BAD said, “I have become more compassionate and try more and more to learn about the disease and its management.” Positive and compassionate approach and supportive handing of the patient was a common method of caregiving.

Acceptance of the illness as it exists was another strategy employed. One caregiver said, “We are aware of the fact that this problem is of long-term and is now part of our life.” Caregivers shared their experiences at dealing with the behavioral disturbances of their patient as “Whenever she stops treatment, she loses temper, breaks things and shouts when her demands are not met. But the person with mental illness can be tackled not by anger… but by coaxing, cajoling and comforting” Accepting the behavioral outburst as a result of illness helped in coping with it.

Caregivers were hopeful of a good future. Father of a young male with schizophrenia expressed: “If good things change, so do the bad things, and therefore our bad time will also pass away.” Mother of another person said, “If things are not good today, tomorrow will be better.”

Having faith in God was an important coping strategy voiced by many caregivers. Most caregivers felt that one should do one's duty of taking care of their relative with illness. One should provide him/her with the best treatment and leave everything else for God. Religion was often a source of support. Most caregivers believed in God and thought that He would help them out of this situation. Some of the statements were, “I do weekly fasting so that he gets well soon” “I pray every day and it helps me in difficult times.” Religious methods of coping have been reported by earlier workers.[29]

Most parents as well as spouses were able to provide all possible help to their patient in the caregiving role despite all the difficulties encountered. It is important to comment here that the study was conducted in a hospital setting and the subjects consisted of the caregivers who had been bringing their patients to the hospital and consented for the study. Thus, this included a motivated group.

HOW TO HELP THE FAMILY CAREGIVERS AND MEETING THEIR NEEDS?

It is essential for the mental health professionals to identify the burden in the caregivers of the patients they are treating, so that they are not adversely affected by it. Early identification and suitable interventions would help in keeping this support base intact, healthy and effective. The mental health professionals need to take timely care of the needs of the caregivers and provide necessary support and interventions, as per indication. This would help the caregivers to deal effectively with the burden of caregiving using healthy coping strategies and also improve their caregiving capability.

It is a known fact that the caregivers want to have more information about mental illness, management of problem behaviors, and want to be involved in treatment decisions.[30] Patients also welcome involvement of caregivers in their care.

Family based interventions have proven efficacy in reducing relapse rates and negative impact of psychosis on caregivers[31] and can reduce negative attitudes and increase the willingness in the caregivers in providing care to patients.[32] An excellent example is the family group sessions taken by Dr. Vidya Sagar in 1950s and 1960s at Amritsar, in which the family members would learn to care for their patient in the hospital. This would also reduce the hostility in the minds of the patients about their family members. Dr. Vidya Sagar would provide treatment and also group sessions. The improved patients would go back to the community with a message that mental illness can be treated and hence also reducing the stigma. Thus, started the principle of involvement of families in the care of the mentally ill, at a time, when the families were considered as toxic in the west.[33,34] The American Psychiatric Association and NICE guidelines for schizophrenia also recommend family interventions for families in contact with patients. A minimum of 10 therapy sessions over a period of 3 months to 1 year are recommended.[35,36] The interventions could be provided to the individual families or in a group format.

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. Day-to-day problems in the management of patients should be discussed, and simple and practical solutions may be offered. Simple behavioral interventions like anxiety and stress management may be undertaken. Sessions can be held weekly or fortnightly initially and later once in a month. Number of group members may vary from 10-12 to 15-16.[27,37] Structured psycho educational interventions consisting of monthly sessions for 9 months have been found to be significantly better than routine out-patient care on several indices, including psychopathology, disability, caregiver-support, and caregiver-satisfaction.[38]

CAREGIVER BURDEN: CHANGING REALITIES

In India, most people suffering from psychiatric disorders do not receive any financial benefits from the state on account of their illness or unemployment. Those living in nuclear families are facing a new problem, because in the past families used to be bigger, and joint families provided human as well as material resources for the care of people with mental illness. In a nuclear household, it becomes an onerous duty for the already extremely busy family members to look after the person with mental illness.

The gradual breakdown of the joint families with urbanization and smaller nuclear families with both spouses working have introduced the new problem of increasing load on the family caregivers. Once a family member gets a chronic mental illness, there is a huge drain on the family resources. The caregiver may have to make considerable compromises on his or her job so as to extend constant care to the sick family member, and sometimes may even have to leave the job, further increasing the financial problems.

Sometimes, the family breaks down due to death or divorce and the role of caregiving may be taken by some other relative, such as parents or siblings. This creates a new crisis, which needs to be handled by the mental health professional. In many cases, the mental illness may itself be in the background of the marital breakdown. Sometimes, a female patient is deserted by her husband, and the mother extends all sorts of support to her ill daughter as well as to her grandchildren. Caregivers of women with schizophrenia and broken marriages are at a double disadvantage.[39]

In this background, more and more families are looking up to the professionals for help. This further emphasizes the need for a family based intervention programs. Family caregivers who are in contact with treatment teams for a long time learn to develop healthy coping methods to deal with the burden of caring for relatives with severe mental illness by both experience and prolonged therapeutic contact with the treating doctors.

SOME NEW INITIATIVES

In the recent past, a number of new initiatives have taken place in our country both in the voluntary sector as well as the government sector. The voluntary sector as well as efforts from the mental health professionals have been successful in bringing changes in the law toward welfare of the mentally ill and their caregivers. A number of nongovernmental organizations (NGOs) have been working in the area of providing community support to persons with mental illness and their caregivers. Some of these include Ashadeep (Assam), AMEND (Bangalore), Aasha (Chennai), SAA (Pune), NAMI India (Mumbai), Turning Point (Kolkata) and SCARF (Chennai).[40] Certain NGO groups have started long-stay facilities for persons with mental illness needing rehabilitation, e.g. Richmond Fellowship; Medico Pastoral Association.[41] Certain other groups are running day care centers at different places in the country. Some day care centers have been started under District Mental Health Program at certain places. However, the services are still minuscule considering the enormous magnitude of the problem.

There have also been recent initiatives in relation to special consideration for persons with mental disability. In the existing Rights of Persons with Disabilities Act, 1995, though mental illness was included in the list of illnesses eligible for disability benefits, there have been a very limited reach due to various procedural and legal limitations.[42] The new Rights of Persons with Disabilities Bill, 2012 has broadened the definition of mental illness for the purpose of various disability benefits. “Mental Illness” refers to a chronic disturbance of mood, thought, perception, orientation or memory, which causes significant impairment in a person's behavior, judgment and ability to recognize reality or impairs the persons’ ability to meet the demands and activities of daily life. Disability pension (Rs. 1000 pm) for various disabled persons, including mental illness and mental retardation with more than 40% disability has recently been introduced in the state of Delhi. The steps may bring some relief to the caregivers.

Another important issue is the exclusion of mental illnesses from the list of illnesses eligible for medical insurance in India, though a provision exists in most of the developed world.[43] A category of “suicide, self-inflicted injury or illness, mental disorder, anxiety, stress or depression, use of alcohol or drugs,” can be found in the list of exclusions. There has been an initiative in the Mental Health Care Bill, 2013 to remove this discrepancy. The Bill has included a clear direction for the insurance companies as “The Insurance Regulatory Development Authority established under the Insurance Regulatory Development Authority Act, 1999 shall endeavor to ensure that all insurers make provisions for medical insurance for treatment of mental illness on the same basis as is available for treatment of physical illness.”[44]

NEED FOR STRENGTHENING THE SERVICES

In our country, we have very limited community support available for patients with mental illnesses and their caregivers. The society often has an ambivalent attitude toward persons with mental illness rather than helping them unconditionally. The neighbors and even relatives look down upon the person with illness and the caregivers. The patient and the family members are often avoided in society.[2,28]

There is a need to spread community awareness about the mental illnesses and a message that most of the mental illnesses can be easily treated and the patient can live a nearly normal life in the community. This would help in bringing down the stigma associated with mental illnesses and help integration of persons with mental illnesses in the society, and in turn reduce the stresses faced by the caregivers.[45,46]

There is also need to establish community-based mental health care facilities, which will reduce the distances travelled by patients with mental illness and their caregivers to seek treatment.[47] Long-stay facilities are required for persons with mental illness, who don’t have any family members to look after or the family members are not in a position to take care of them due to ill health or old age.[48] At present, treatment of mental illnesses is not covered under medical insurance, which is the need of the hour. Provision of disability pension also needs to be introduced for the persons disabled due to mental illnesses. The Government has taken some steps in these directions under the National Mental Health Program[45] and in the forthcoming Mental Health Care Bill.[44] But still, a lot needs to be done in this direction.

CONCLUSION

Family caregivers of persons with mental illnesses are a key support system in our country as well as in most of the nonwestern world. In the absence of adequate mental health infrastructure, the family caregivers take multiple roles at providing care for persons with mental illnesses. The family caregivers suffer substantial burden as a result of the caregiving role and need help from the mental health professionals. It is very important for the mental health professionals to identify the needs of the family caregivers, the stresses faced by them and introduce suitable interventions, so as to reduce the burden as well as help in developing healthy coping strategies.