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Doctors consultations should address family caregivers needs: Psychiatrists 

17 Jun 2021

By Ruwan Laknath Jayakody   Healthcare professionals should use every meeting with patients as an opportunity to inquire about their caregivers as meeting the caregivers’ needs including addressing their emotional and physical requirements, will impact on the patients well being.  This suggestion was made by S.R. Perera (attached to the Peradeniya University’s Medical Faculty’s Psychiatry Department), T.P.M. Fonseka (attached to the Colombo North Ragama Teaching Hospital), D.K. Amarasinghe (attached to the Peradeniya Teaching Hospital) and S.S. Williams (attached to the Kelaniya University’s Medical Faculty’s Psychiatry Department) in an editorial published recently in the Sri Lanka Journal of Psychiatry titled “Caring for the carer: Are we doing enough?”.  Even though hospital admissions for short periods may sometimes be arranged during acute crisis situations, in the context of Asian societies, most of the care and onus on caregiving for the infirm and thereby vulnerable or the relative with a serious mental disorder, Perera et al., observe, falls, by default, on the immediate family and is provided by a family carer, often females - mothers, wives, daughters and sisters - with the demands being made on them as a result, being overwhelming. This is in part, Perera et al., explain, due to institutions with longer stay facilities being few and far between, costly and often exploitative while formal community care remains a pipe dream.  In this context, a carer or caregiver is a person who provides a type of unpaid, ongoing assistance and service during mental health crises, subsequent treatment, recovery, and relapses (which are unsettling for family relationships, work and life), whereas formal caregiving is provided by healthcare professionals or paid carers. The former category of carers typically includes, according to “A practical guide to caring for caregivers” by S.M. Parks and K.D. Novielli, a family member or friend who attends to the physical, emotional and sometimes even financial needs of the person, and who may or may not live in the same household, and usually does not have fixed hours, or terms or conditions of employment.   Coming to terms with the development of a mental disorder and coping with mental and behavioural disorders such as for example, dementia, is challenging for both the person suffering from such and the carer/carers within the patient’s family (such as a daughter looking after a father), the latter who along with the patient also struggle, as all of a sudden, restrictions are imposed on the family. This situation is, as explained by S.H. Zarit, K.E. Reever and J. Bach-Peterson in the “Relatives of the impaired elderly: correlates of feelings of burden”, especially true in the case of the family member who takes on the role of being the main carer, while S.T. Cheng further explains in the “Dementia Caregiver Burden: a Research Update and Critical Analysis” that the main carer has to often, unwittingly, continue on as the primary carer for many years, in part due to the fact that certain symptoms may remain even after the patient has been discharged from hospital or while in remission, thus demanding long term commitment. As P. Ampalam, S. Gunturu and V. Padma point out in “A comparative study of caregiver burden in psychiatric illness and chronic medical illness”, the burden on the caregiver of a person with a mental disorder is higher than in the case of carers of those with chronic medical conditions. One in three carers of patients with dementia had depression, K.E. Covinsky, R. Newcomer, P. Fox, J. Wood, L. Sands, K. Dane and K. Yaffe found in the “Patient and caregiver characteristics associated with depression in caregivers of patients with dementia”, a figure which is much higher than in their counterparts who were caring for patients with other medical illnesses. The “Prevalence of Mental Health Disorders Among Caregivers of Patients With Alzheimer’s Disease (a neurodegenerative disease)” by A.B. Sallim, A. Sayampanathan, A. Cuttilan and R. Ho also mentions that there is a higher perceived burden when the carers have no control over the patient’s challenging and problematic behaviours.  Carers suffer from stress and this is, Perera et al., note, associated with complaints regarding their physical health and the increased use of primary health care services. M. Scazufca and E. Kuipers elaborate in the “Coping strategies in relatives of people with schizophrenia before and after psychiatric admission” that carers may develop maladaptive coping and deficient health practices that in turn contribute to poor physical and mental health while T. Rigby, R.T. Ashwill, D.K. Johnson and J.E. Galvin add in the “Differences in the Experience of Caregiving Between Spouse and Adult Child Caregivers in Dementia With Lewy Bodies (abnormal aggregations of certain types of proteins that develop inside nerve cells)” that some carers exhibit avoidance coping, emotional reactivity and wishful thinking. Carers have higher rates of depression, anxiety and substance misuse, compared to the normal population, W. Katon explains in the “Depression: relationship to somatisation (generation of physical symptoms of a psychiatric condition) and chronic medical illness”. Furthermore, depression is found to be more common among female carers, carers with male care recipients, and in carers who have a spousal relationship with the patient, K.B. Adams notes in the “Specific effects of caring for a spouse with dementia: differences in depressive symptoms between caregiver and non caregiver spouses”.  There is also the all consuming issue of stigma, which, P. Werner, M.S. Mittelman, D. Goldstein and J. Heinik emphasise in the “Family stigma and caregiver burden in Alzheimer’s disease”, is faced by family members, especially the carer/s, on a daily basis.  Additionally, this situation is aggravated for carers providing support to the patients, by the financial burden, the loss of recreational and free time including the sacrificing of sleep, exercise, health related visits and social engagements, guilt on the part of the carer (due to the failure or perceived failure to provide satisfactory care) and burnout, as noted in “Living with a depressed person” by J.C. Coyne, R.C. Kessler, M. Tal, J. Turnbull, C.B. Wortman and J.F. Greden, “How stigma interferes with mental health care” by P. Corrigan and “Caregiver burden and burnout. A guide for primary care physicians” by R.T. Kasuya, P. Polgar-Bailey and R. Takeuchi.  To deal with this situation and these issues, family carers had, according to the “Support Needs for Family Caregivers of Clients with Mental Illness in Iran: A Qualitative Study” by M. Akbari, M. Alavi, A. Irajpour, J. Maghsoudi, V. Lopez and M. Cleary, and “Family demands, social support and caregiver burden in Taiwanese family caregivers living with mental illness: the role of family caregiver gender” by C.Y. Hsiao, requested social and emotional support from other family members (which in turn improved family relationships and the relationship with the sick relative), neighbours and religious leaders, safety and security. High income countries, it is noted, also offer respite care for carers. The “Mental Health Status and Its Associated Factors Among Caregivers of Psychiatric Patients in Kuching, Sarawak” study by J.S.V. Vun, W.L. Cheah and H. Helmy found that carers used religious and emotional coping, and acceptance as coping strategies, along with leisure activities and the use of traditional healing methods.  Therefore, taking into account the magnitude of the burden and the struggles and the suffering of the carer, Perera et al., emphasised the importance of alleviating such by caring for the carer, from the time of the first visit to the mental health service provider, noting further that it is the bounden duty of the doctor to always provide a private opportunity for the carer to discuss their concerns, provided that the patient has no objection. In this regard, Perera et al., pointed to the lack of a formal protocol being put in place, even in the context of the most advanced of mental health facilities. Towards this end, A. Yesufu-Udechuku, B. Harrison, E. Mayo-Wilson, N. Young, P. Woodhams, D. Shiers, E. Kuipers and T. Kendall noted in the “Interventions to improve the experience of caring for people with severe mental illness: systematic review and meta-analysis” that targeted interventions can reduce family members’ burden, improve knowledge of the disease and treatment, and increase their ability to cope with it. Parks and Novielli have proposed the provision of direct support to carers, ranging from psychological support to training and respite care while Perera et al., suggested support and peer groups whilst acknowledging however that in reality, most carers do not have the resources, including the time and money, to access these support mechanisms, even if they are available. “We need more research on the possible increased morbidity and mortality of carers due to the neglect of their physical health while holistic interventions that address carer health, including the acknowledgement of the role of religious and cultural practices, have to be developed and set down in manuals,” Perera et al., urged.

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