Aman Batish, Co-founder Manas Mitra & Member, State Mental Health Authority, Haryana (as a representative of caregivers)
illustration by: Ellie Ji Yang
Introduction
Mental health is an often overlooked and rather ignored aspect of people’s life. It is also less discussed due to issues like stigma and a general lack of understanding about mental disorders. However, statistics show that mental disorders are becoming increasingly common throughout the world, with an estimated 264 million people affected by depression, 45 million by bipolar disorder and another 20 million people by schizophrenia and other psychoses[1].
This is a worrying trend because apart from impacting the life of the affected person in terms of the disability caused it is also a huge burden to the caregivers and the society at large. According to estimates by WHO the burden of mental health problems in India alone is 2443 disability adjusted life years (DALYs) per 1,00,000 population and the economic loss expected due to mental health issues between 2012 to 2030 is USD 1.03 trillion[2].
It is amply clear therefore, that mental health is a subject that deserves our full attention. We shall only be acting prudently by adopting a pro-active approach in understanding and dealing with it.
Mental disorders and their prevalence in India
Mental disorders include a wide range of conditions such as Common Mental Disorders (CMDs) like depression and anxiety disorders; Severe Mental Disorders (SMDs) which include bipolar disorder, schizophrenia and other type of psychoses; Substance Use Disorders (SUDs); Developmental Disorders (DDs) like autism and Intellectual Disability.
The National Mental Health Survey of India 2016[3] provides a great insight into the prevalence of mental disorders in India. The percentage of population currently affected by any type of mental disorder currently has been reported as 10.6% and a life time prevalence reported as 13.7%. 1 in 20 people in India suffer from depression with CMDs affecting 10% of the population. The situation is worsened by the fact that individuals and families also tend to ignore and neglect these conditions till they become severe. 1.9% of the population was found to be affected by SMDs in their lifetime. But this is equally significant as CMDs because 3 out of 4 persons with SMD face significant disability in work, social and family life and because of the stigma attached with these disorders along with a requirement of long-term rehabilitation services. Similarly, the incidence of intellectual disability (1.7%) and autism spectrum disorder (1.6%) assumes great significance as these conditions need an extensive management effort. Another important revelation of this study is that productive age groups are most affected by mental disorders (figure-1).
Figure-1: Prevalence of mental morbidity in different age groups in India (Weighted Percentage %)
It is needless to say, that the burden of care and its cost (both direct and intangible) to the affected families and the society at large is expected to be immense.
The cost of care for mental disorders
The National Mental Health Survey of India 2016 also revealed that the average monthly out of pocket cost of accessing treatment and care by families of persons affected with mental disorders ranges between INR 1,000-1,500. This is just an estimate of the direct cost and the intangible costs due to loss of productivity of the affected person and the caregiver etc. is difficult to even monetize. The participants of the survey also reported that the expense of treatment often lead to a financial crisis in their family. The situation is compounded by a higher prevalence of mental disorders in lower income strata (figure-2), which leads to more burden due to lack of financial capability.
Figure-2: Prevalence of mental disorders by median household income levels in India
On the whole, mental illnesses severely affect and reduce the quality of life and lead to decreased productivity and lower earning potential, not just for the affected person but also for the caregiver. In fact, caregiver burden (objective and subjective) has been found to be quite significant in case of mental disorders of all types like schizophrenia, bipolar disorder, Autism spectrum disorder (ASD), Intellectual Disability (ID) and across regions be it India[4] or Europe[5].
Studies across the world have tried to monetize the cost of caregiving for different mental disorders and the numbers are staggering. For example, the lifetime cost for a person with ASD without ID including the loss of productivity and caregiver cost was estimated at USD 1.36 million in the United Kingdom and at USD 1.43 million in the United States and for a person with ASD with ID at USD 2.2 million in the United Kingdom and USD 2.44 million in the United States[6]. Another study has estimated the social cost of ASD to reach around USD 15 trillion by 2029 if the increased rate of prevalence continues[7]. Such exhaustive studies should be carried out for all regions of the world to map caregiving cost accounting for specific local factors.
Conclusion and way forward
In light of what has been discussed so far it can be safely concluded that:
1. Mental disorders are becoming increasingly prevalent in India and the world over.
2. Mental disorders severely affect the quality of professional, social and personal life of both the person with disorder and caregivers.
3. Caregiver burden is a significant issue in case of mental disorders as most caregivers experience objective and subjective burden like lower earning, stress and burn out, reduced productivity etc.
More India specific studies need to be carried out to assess the problems related to mental disorders in the Indian context. Such studies shall help in formulating policies for resolving region specific issues. Specifically, the issue of caregiver burden needs to be understood in greater detail in the context of Indian social fabric, customs, beliefs and family structure. In most cases in India, the line of treatment, rehabilitation strategies and also Govt. policies are patient-centric in nature and take caregiver support and wellbeing for granted, whereas in reality the entire family (patient and the caregivers) often needs attention and participation in the treatment and rehabilitation process. Therefore, working in this direction would do a lot of good to all the stake holders involved in the process of providing care, treatment and rehabilitation to persons affected with mental disorders.
References
[1] World Health Organization, “WHO Factsheet on Mental Disorders.” [Online]. Available: https://www.who.int/news-room/fact-sheets/detail/mental-disorders. [Accessed: 29-Apr-2022].
[2] World Health Organization, “Mental health In India.” [Online]. Available: https://www.who.int/india/health-topics/mental-health. [Accessed: 29-Apr-2022].
[3] M. R. and N. collaborators group Gururaj G, Varghese M, Benegal V, Rao GN, Pathak K, Singh LK, Mehta RY, Ram D, Shibukumar TM, Kokane A, Lenin Singh RK, Chavan BS, Sharma P, Ramasubramanian C, Dalal PK, Saha PK, Deuri SP, Giri AK, Kavishvar AB, Sinha VK, Thavody J, Chatterji R, Akoijam B, “National Mental Health Survey of India, 2015-16: Summary,” 2016.
[4] N. Kate, S. Grover, P. Kulhara, and R. Nehra, “Relationship of caregiver burden with coping strategies, social support, psychological morbidity, and quality of life in the caregivers of schizophrenia,” Asian J. Psychiatr., vol. 6, no. 5, pp. 380–388, 2013.
[5] D. Ignatova, M. Kamusheva, G. Petrova, and G. Onchev, “Burden of informal care for individuals with schizophrenia and affective disorders prior to hospital admission,” Eur. J. Psychiatry, vol. 33, no. 2, pp. 54–62, 2019.
[6] A. V. S. Buescher, Z. Cidav, M. Knapp, and D. S. Mandell, “Costs of autism spectrum disorders in the United Kingdom and the United States,” JAMA Pediatr., vol. 168, no. 8, pp. 721–728, 2014.
[7] J. Cakir, R. E. Frye, and S. J. Walker, “The lifetime social cost of autism: 1990–2029,” Res. Autism Spectr. Disord., vol. 72, no. January, pp. 1–18, 2020.
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