|Year : 2021 | Volume
| Issue : 4 | Page : 371-377
Family caregivers of persons living with mental health conditions: Challenges and concerns
Past President, Schizophrenia Awareness Association (2010–2019), Pune, Maharashtra, India
|Date of Submission||07-Nov-2021|
|Date of Acceptance||08-Nov-2021|
|Date of Web Publication||25-Nov-2021|
Mr. Amrit Bakhshy
Schizophrenia Awareness Association (2010-2019), Pune, Maharashtra
Source of Support: None, Conflict of Interest: None
A vast majority of persons diagnosed with mental disorders live with their families in most of the low- and middle-income countries. There is a growing evidence of the adverse impact of caregiving on the caregivers. There is a need to recognize the significant contribution of caregivers. Specific programs to improve skills of self-care for emotional health, skills of caregiving, social welfare, and legislative support to caregivers will make them more effective and further decrease the demand on mental health services. This is an urgent need. India has the opportunity to show the way through innovative training, legislative, and other measures.
Keywords: Caregiving, community, empowerment, family, innovation, legislation, support
|How to cite this article:|
Bakhshy A. Family caregivers of persons living with mental health conditions: Challenges and concerns. Indian J Soc Psychiatry 2021;37:371-7
|How to cite this URL:|
Bakhshy A. Family caregivers of persons living with mental health conditions: Challenges and concerns. Indian J Soc Psychiatry [serial online] 2021 [cited 2021 Dec 3];37:371-7. Available from: https://www.indjsp.org/text.asp?2021/37/4/371/331129
| Introduction|| |
Family caregivers are a unique resource for mental health of the community in India and other developing countries. They need to be recognized and nurtured for the good of the persons with mental disorders that they are caring for and the larger community. This can be appreciated from the fact that there has been almost an absence of institutionalism in India throughout history. For example, at the time of India's Independence in 1947, India had 10,000 psychiatric beds for a population of about 300 million. In contrast, the United Kingdom, with one-tenth of the population, had 150,000 psychiatric beds (150 times that of India), largely as big size asylums. In India, there are long-standing values of the family unit such as “anubandha,” “bhandavya,” and “sambandha” that bind the family members to each other. In 2021, when we are thinking of the human rights of persons with a diagnosis of mental disorder, this rich resource of caregivers also needs to be recognized and nurtured.
Here, I would like to share my experiences of being a caregiver as well as an activist. I have shared my experiences and observations of caregiving of persons with mental illness in my book [Figure 1]. Though my daughter's schizophrenia was traumatic, it motivated me to be a mental health activist and help other family caregivers.
In this article, I would like to present (i) the lived-in experiences of caregivers in India and the role of legislation, (ii) the mental health care situation in India, and (iii) suggestions for the future to strengthen the institution of family caregivers.
I would also like to recall here, my participation in a unique family caregivers' national conference at Chandigarh in 2017 organized jointly by a mental health support group and the Department of Psychiatry, GMCH-32, Chandigarh, under the guidance and support of the late Prof. B. S. Chavan. The theme of the conference was Support for Caregivers and Persons with Mental Illness: Innovative Approaches. It was unlike any other conference that I had attended related to caregivers and persons with mental illness. There was a good participation of the caregivers from different regions of the country. The experiences of caregivers were shared, and new approaches were discussed, the same way as the scientific papers and experiences of professionals are presented and debated. I was able to share my experiences and learn from the wide range of experiences of other family caregivers. I was aware of the contribution of Prof. Chavan in the field of mental health and the support he had been extending to the family caregivers and had read many of his publications [Table 1]. However, meeting him in person, interacting with his team, and witnessing the various services provided were another experience, truly memorable! For the mental health community, especially the families, Prof. Chavan's untimely death has been an irreparable loss. The Chandigarh Centre's contribution to caregiving was unique as can be seen in [Table 1].
| Lived in Experiences of Family Caregivers in India|| |
In India, the 240 million “Family Caregivers” of persons with mental disorders are spouses, parents, siblings, other family members, or even friends. They are the largest unpaid workforce and a critical national resource in the context of mental health care. They provide a link between the patients and the mental health professionals. They are the source through which treatment and recovery are channelized. They bear the brunt of illness as much as the persons with mental illness do. The family caregivers sacrifice productive years of their lives providing full-time care to their dear ones. There are no holidays, no outings, no socialization, and no visits from friends and relatives. They face angry neighbors who resent shouting and screaming coming from their homes at odd hours. There are a number of writings focusing on the caregivers of persons with a diagnosis from India,,,, and from Western countries.,,,
The onset of mental illness can be a terrible happening in the life of the affected person and equally devastating for the rest of the family members. Overwhelmed families have to face their loved one's mental illness and its impact on their lives without much information on how to deal with it. Families are the backbone of caregiving for persons with mental illness. Except for over half a million wandering mentally ill (Homeless vagrants are 1.77 millions), others are looked after at home by their family members.
Caregiving of persons with physical infirmities is less difficult as the care receivers are aware of the support they need and are getting. In the context of common mental disorders (CMD) (neurosis) also, caregiving is less strenuous and less time consuming as many of the affected family members are functional to some extent, accept their illness, and cooperate in treatment. Family caregivers, however, have a difficult time in providing care and treatment to a family member with severe mental disorder (SMD) as often the care receivers do not accept that they have any illness, have to be coaxed to see a MHP, and they refuse to take the prescribed medicines. Family caregivers also face hurdles in providing treatment, if they live in rural areas and small towns as the mental health infrastructure is nonexistent there; mental health professionals and establishments are concentrated in cities.
Lack of awareness about mental illness adds to the woes of the caregivers. When the illness strikes a family member, the family is caught unaware. There is shock, dismay, fear, and anxiety. Caregiver parents get into self-blaming and have many unanswerable questions [Table 2].
If it is an SMD, one of the parents has to take over as a full-time caregiver or if the parents are too old, one or more siblings may come forward to take that role. If the affected family member is married, the spouse takes that role. Onset of a SMD in the family creates a turmoil, priorities change; lifestyle changes, confusion, and dilemma prevail. Financial worries start, earnings dwindle, expenses mount up. Self-care becomes a casualty. Caregivers get no time for hobbies and personal pursuits. Other family members feel neglected. There is a fear of violence. Burnout occurs. Social ostracization happens. Hardly, any time is available for other chores.
Over the years, there is a phenomenal increase in cases of mental illness. There is stiff competition in education, employment, and other walks of life. As a result, cases of stress, anxiety, depression, and attempted suicides have gone up. More and more cases of child abuse are reported, leading to increase in PTSD. Cases of insurgency and hostility between nations causing destructions, killings, and injuries and natural calamities are also leading to increase in cases of PTSD.
Disintegration of joint families is a big setback to the institution of family caregiving, nucleus families are emerging. With both the spouses working, children get neglected. A large number of elderly couples are on their own as their children are working elsewhere or live abroad. Many single senior citizens live all alone. If one of the surviving elderly couple develops Parkinson or dementia, there is no one to provide care. Many cannot afford institutionalization. The Mental Health Care Act 2017 provides for community homes, supported accommodation, group homes, but hardly any steps have been taken by the concerned governments to fulfil their duties as listed in Chapter VI of the Act.
If both the parents are working and their child develops a severe mental illness, one of them has to sacrifice the job to be with the affected family member. If there are only two members in the family and one develops severe mental illness, full-time caregiving becomes very difficult as the other family member has to carry on with the job. There are no supportive laws which would provide time off from work in emergencies, allow staggered working hours, compassionate leave, and relaxation in transfers, etc. Caregivers get no time to look after themselves, no time to pursue interests and hobbies, no periodic rest and recuperation, and support in exigencies.
There are cases, where children are required to play the role of caregivers to their one or both the parents and elder siblings. There are cases where caregiving is required for almost the entire family.
Some of the many actual cases are summarized below by way of illustration:
The family has parents, four sisters, and a brother. The father retired as a middle-level officer from a bank. The semi-literate mother wanted to have a son, for which they had to wait till 5th delivery. The cherished son is diagnosed with schizoaffective disorder, and two of the four daughters have CMD. The other two sisters are settled overseas. The three siblings with mental illness live with the parents. The treatment is received off and on. The father has a pension which is inadequate for five members, so he does odd private jobs to supplement the pension.
Father has paranoid schizophrenia and is admitted in a Regional Mental Hospital. Mother and two sons have CMD. A daughter, who is the youngest of the siblings, remains unmarried and is a caregiver to the rest of the family including a divorced brother whose illness was not revealed before marriage.
Father who lived with schizophrenia has passed away. Both the sons live with CMD. Mother, who, herself, is a borderline case of intellectual disability, is the primary caregiver. There is no regular source of income. A relative sends some money, and a caregivers' NGO provides some help. None in the family is getting any treatment.
| Impact of Legislation on the Family Caregivers|| |
The MHCA 2017 merely mentions in its objects and reasons, the financial hardships the families bear and emotional and social burden families undergo in providing treatment and care for their relatives with mental illness but provides no straight relief to the families which would enable them to provide better care and treatment to the affected family members. Section 2 (1) (e) defines “caregiver” which includes a paid caregiver. Trained paid caregivers are not available in India, and most of the families also cannot afford them. RCI has recently approved a certificate course in caregiving with an aim to prepare a cadre of trained caregivers who can provide quality care in various areas of disabilities including mental illness. National Institute of Mental Health Rehabilitation (NIMHR), Sehore (Bhopal) have started conducting the course, and we can hope that gradually a cadre of professional caregivers will be built to relieve family caregivers in exigencies. Professional caregivers cannot be a good long-term substitute for family caregivers as the latter provide care based on love and bonding, not for any monetary gain.
As the persons with mental illness depend on the support provided by the family caregivers, the provisions in the Act have a direct or indirect impact on the family caregivers. Chapters III and IV of the MHCA 2017 providing for Advance Directive (AD) and Nominated Representative (NR) have a negative impact, a setback to the family caregivers.
Section 14 (1) of MHCA 2017 provides that every adult can appoint a nominated representative. Section 17 © of the Act states that while fulfilling his duties, the nominated representative should provide support to the person with mental illness in making treatment decisions.
The provision excludes caregivers totally in decision making when the person with mental illness needs nearly full support and is not in a position to take their own treatment-related decisions. Often the affected family members blame the family for their illness or for making them take medicines when, as they believe, nothing is wrong with them. Hence, they might make a non-family member as their nominative representative. The family caregivers would be expected to provide financial and other support, but the decision-making would be with someone who is not a family member. The family caregivers would be reluctant to provide financial and other support if they get excluded from decision-making. It would be a setback to the care receivers' treatment and to the institution of family caregivers.
The other contentious provision in the Act is that of “Advance Directive“. Section 2 (1) (a) of the Act gives a nebulous definition of Advance Directive, stating that Advance Directive means an advance directive made by a person under Section 5. In an easy to understand language, Advance Directive is an advanced expression made by a person of their will and preferences concerning treatment decisions that may need to be taken in respect of them if they subsequently lack the capacity to decide. Section 5 (1) and (2) state that every person, irrespective of their past mental illness or treatment, has the right to make an advance directive.
As per section 5 (1) (a) ((b) and (c), the Advance Directive made on a prescribed form and registered with the Mental Health Review Board (MHRB) should state how to be cared for and treated and how not to be cared for and treated for a mental illness, to be used when the person with mental illness does not have the capacity to take treatment-related decisions. Normally, when the family member with mental illness is in need of high support and is unable to take health-related decisions, the mental health professional after discussing with the family, caregiver decides on the treatment. It is similar to taking treatment-related decision about a patient in a coma. In an Advance Directive, all future situations cannot be anticipated. Moreover, a psychiatrist may not agree to treat the person with mental illness as per their wish, if the psychiatrist considers it not the right course of treatment. This would create a piquant situation. Making an appeal to the MHRBis a cumbersome procedure, and a psychiatrist would prefer not to take the case, instead of making appearances before the Board. Furthermore, MHRBs have not been set up so far or if setup at a few places, are not functional, though the act was notified way back on May 29, 2018. This is highly disheartening for the family caregivers. For elderly caregivers, such legal provisions are highly stressful.
How difficult, the things have become for family caregivers can be seen from the following real-life situations narrated in brief:
The family consists of parents, both super senior citizens, two sons, one lives abroad, the other has a job in another distant town, two sisters, and both doctors in government jobs. One sister has schizophrenia, lives with parents, has no insight, and refuses to take any medicine. She shouts at parents and threatens them and has filed a case against them for harassment. The mental hospital, instead of guiding the parents to seek admission under section 89 of the Act, refuses to admit her without her consent, quoting her human rights.
Family consists of mother, in her mid-seventies, one daughter, and one son. The daughter is living with paranoid schizophrenia, refuses to take medicines, and beats her mother regularly. As she got violent with neighbors, the family was asked by the society, supported by the police to move out. Now, they live in a rented flat elsewhere. The brother had put his sister in a well-known premier mental health institute. They discharged her after 90 days saying that the new act does not permit admission beyond 90 days, which is incorrect. The son is married, has an 8-year-old child with autism. Divorce proceedings are on as wife does not want him to get involved with his sister's illness. Mother is scared to put her daughter again in a residential home u/s 89 of the Act. She says that the daughter who now only beats her, will kill her if she forcibly gets her admitted again in a residential care.
Widower father in his eighties, needing care for himself, is the caregiver of his only middle-age daughter with paranoid schizophrenia and OCD. She was on a high dosage of an antipsychotic given in chronic cases, which caused seizure attacks. Even after dosage of antipsychotic drug was reduced, she again got series of seizures making the psychiatrist to stop that antipsychotic and put her on other antipsychotics. Symptoms have come back, and OCD is at its peak. The antipsychotic which was stopped is reintroduced with antiseizure drugs. However, the patient remains highly symptomatic. The patient is prescribed benzodiazepine for her OCD and insomnia. The father says that he has also been advised to take small dosage ofbenzodiazepine when he is under too much stress.
| Mental Health Care in India|| |
In India, we have poor infrastructure for mental health and an acute shortage of mental health professionals. The National Mental Health Survey 2115–16 conducted by NIMHANS estimated that there were 150 million persons living with mental illness. According to a study published in the Lancet Psychiatry in 2020, the number of people suffering from mental disorder in 2017 was 197.3 million. A recent survey by the Indian Psychiatric Society (IPS) estimated that there was an increase of 20% in number of mentally ill after the first wave of the pandemic, which makes it about 240 millions. Second wave would have added a few more millions. For 240 million persons living with mental illness, we have an equal number of family caregivers supported by as per World Mental Health Atlas More Details, 2021 of the World Health Organisation, only 25 thousand mental health professionals. For over 25 million cases of SMD (2% of the population), we have the same number of family caregivers, and only about 10,000 psychiatrists and 60,000 beds, of which 16,000 beds are occupied by involuntary patients.
Despite a poor infrastructure and highly inadequate number of mental health professionals, the recovery rate of persons with mental illness is higher in India than in other countries. How do we make this happen? No doubt, we have highly competent mental health professionals. However, the Western Europe and the North America also have equally competent mental health professionals, many of them from India. One thing which we have and the Western Europe and the North America do not have, is the institution of family caregivers who can play an important role in recovery.
World Mental Health Day 2021
This year's theme for mental health day was “Mental Health in an Unequal World.” In the context of family caregivers, the inequality is appalling. Some affluent families call mental health professionals for home visits and pay in five figures. Family caregivers from rural areas and from marginalized sections of the society cannot afford to be full-time caregivers as everyone is required to work and earn for daily meals. Many of them chain the family member with mental illness during the day when they go out to work. There are families who cannot afford to provide meals to someone who does not earn. A few decades back, such family caregivers were admitting the patients in a government mental hospital with a false address so that they were not compelled to take the patients back. Since now the proof of address is required, they leave the affected family member in the neighborhood of a shrine so that they get free meals from the devotees. There are also cases, where the truck drivers are requested to leave the affected family member on their way in a forest from where they can't return home.
| Looking to the Future|| |
For a long time to come, in India and other low- and middle-income countries, most of the caregiving will be by the family caregivers. Innovations to strengthen the caregivers could be the biggest 'gift' from developing countries to the rest of the world. It is good to recall that, when the rest of the world was considering the family as “toxic” to the persons with mental disorders, in India families, were included as part of the care programs. This occurred in the 1950s in Amritsar, and Vellore and soon followed by Bangalore and became the norm in many residential psychiatric establishments. In the last few decades, the wisdom of making family a part of mental health care has come to be recognized in other countries also. Prof. Wig,, had reflected on the unique opportunities in India to show the way to other countries as follows:
“'Must we do it, the same way as the Western world is doing it or can there be other ways more suited to Indian psyche and ethos?. In the field of mental health, India has done things which are different than the countries of the West.”
By recognizing, empowering, and supporting the caregivers, we can show the new approach to mental health care.
The following are some of the areas for urgent attention [Table 3].
|Table 3: Priority areas for action (modified from Srinivasa Murthy, 2014)|
Click here to view
From the information obtained through an online search of several government websites, it is observed that a few developed countries take cognisance of the important role played by the unpaid family caregivers. Unpaid family caregivers forego their opportunity to work and earn and career advancement. Some governments have legal framework to compensate caregivers who lose their employment. In a few countries, there is the protection of job of the caregiver by unpaid or paid leave, similar to maternity and paternity leave.
Every person has a right to lead a productive life with an equal access to the available opportunities in the society. Rights are protected of the people with disabilities. There is a need to protect the rights of the persons who provide care to the disabled persons. In India, it is taken for granted that caregiving is the responsibility of the family of the person with mental illness. It is, however, also the responsibility of the state and the community. There is a need to assess the quality of life, economic and social burden on the unpaid caregivers due to the caregiving responsibility. There is a need for strong caregiver associations for mental illness-related issues. Indian society needs to understand that caregiving cannot be just a private duty. It should be a collective duty of the society.
Legal provisions need to be brought in to protect the jobs of caregivers by providing job-protected paid or unpaid leave. An adequate number of facilities for rest and recuperation should be made available and separate section in the department of mental health in the Ministry of Health and Family Welfare should be established to assess the needs of caregivers. There should be a system of assessment of loss of earning due to caregiving, and the State should take the onus of providing the compensation to the caregivers.
| Conclusion|| |
Caregivers are a vital part of the solutions to the needs for mental health care of persons with mental disorders and the mental health of the society. It is a resource founded on culture and history of the country. It is for each one in the community to maximize the potentials of the family caregivers and strengthen the same. Here lies the challenges and the opportunities for the well-being of persons living with a diagnosis of mental disorder and their families.
I value this opportunity provided by the IJSP to contribute. My special thanks to Dr. Nitin Gupta, Editor-IJSP. My sincere thanks also to Prof. R Srinivasa Murthy, Bangalore, for his valuable suggestions about the article.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]