Shomik Ray discusses the role of theatre in initiating dialogue around issues of family caregivers for aged patients with dementia.
The world is experiencing a dual burden of demographic and epidemiological transition, especially in low and middle income countries (Ciccacci et al. 2020; Bramhankar and Dhar 2025). As death rates and birth rates fall, families become smaller, countries are faced with a growing ageing population. WHO estimates that by 2030 there will be 1.4 billion people aged above sixty globally, representing one in six people. At the same time, we are facing an epidemiological transition of shift from communicable diseases (CD) to non-communicable diseases (NCD) and a dual burden of both CD and NCD. Prevalence of mental health disorders among all sections of the population has seen a rapid increase in the last decade. It must also be noted that approximately 14% of adults aged sixty and over live with a mental disorder. WHO estimates that in 2021, 57 million people had dementia and there are 10 million new cases being added every year, of which Alzheimer diseases constitute 60-70% (World Health Organisation 2025b).
With the increase in the elderly population with mental health illness living in smaller families, caregiving poses a significant challenge. Caregiving for the elderly is complex and dynamic over time as diseases progress. This becomes even more challenging for older patients with mental health issues as they are likely to be synchronous with other co-morbidities needing acute care. Care providers of patients with ‘high need’ needing assistance in multiple self-care activities (i.e. bathing, dressing, eating, toileting or getting in and out of bed) have to spend a considerable amount of time in care-giving activities for extended periods. Schulz et al reported that caregivers spent 253 hours per month in providing care to an older adult with three or more self-care or mobility needs (Committee on Family Caregiving for Older Adults et al. 2016). This is equivalent to nearly two full time jobs. The spectrum of care provision is not only limited to direct care for the adult but includes a range of activities of interacting with numerous providers, back and forth from hospital and clinics, dealing with medical emergencies and finally end of life care. These transitions affect the social, physical and emotional health of the caregiver over time (Penrod et al. 2011; Peacock et al. 2014; Gibbons et al. 2014).
The situation is typical in an Indian context. Access to specialised care providers or institutionalised care for elderly patients is restricted as they are expensive. Elderly men have access to limited finances through their lifetime savings and in few cases a meagre pension. This is compounded by the fact that home care is not covered by insurance providers. Hence, regular medication and care poses a financial burden on the limited family resources which are anyway small units. The 76th round of the National Sample Survey (NSS) in India reports that in families with mental illness approximately 18% of the monthly expenditure is spent on healthcare for mental illness, Of them 60% of households are exposed to catastrophic health expenditures. Hence, this role is most often than not fulfilled by the other partner who is also likely to be an elderly person.
This makes the situation more complex as the caregiver is also likely to have medical needs which get ignored for an extended period of time leading to gradual deterioration of health. Anecdotal evidence indicates that in many cases the caregiver faces severe illness and even death soon after the death of the ailing adult. The quality of life of the caregiver during and after the period of caregiving has hardly been studied. Caring for a partner or a family member who has minimum or no memory of the relationship can be source of immense stress. While elderly patients lose memories, family caregivers often have to assume an imagined identity to ensure continuity to caregiving as the patient would refuse strangers. Living through multiple identities while providing care for extended periods of time is likely to affect the mental health of the family caregiver who is probably also an ageing adult. Apart from mental and physical health impacts the loss of quality life time for the caregiver is also not assessed in scientific or social literature (Schulz and Beach 1999; Wilcox and King 1999; Gallant and Connell 1999).
‘Again’ and the immensity of the caregiver role
‘Again’ narrates the story of an elderly patient with dementia and his caregiver. The play is based on a short story of the same name. It has been dramatized and directed by me and produced by Shapno Ekhon. The play had two characters acted by Sushmita Mazumder and me. It was opened to audience on 16th February at the SE Studio, New Delhi. The play opens with the elderly patient standing in front of an open window while it is pouring outside. He is oblivious to the splashes of rain that are making him wet and also the room. An elderly woman walks in with breakfast and rushes to close the window, removing him from it and adequately drying him up before getting him to sit for his breakfast. The opening scene highlights the constant need for vigil on patients with dementia as they need to be kept away from self-harm. This element keeps returning throughout the play as the man has to be kept away from hot liquids, choking on a drink, or a fall. The opening scene also draws attention to the caregiver, who is elderly, has trouble walking and making quick movements in response to the physical motions of the patient.
The older man does not recognise the caregiver as evident from his opening line in the play, “Do I know you?”
The woman identifies herself as his ‘new nurse’. The adjective ‘new’ needs attention. The patient is likely to have forgotten the previous nurse from even the previous night. A new identity needs to be created every morning. While the patient is ephemeral with his memory, the caregiver has to wake up and live with a new identity every day of her life for an extended period.
She tries to engage in a conversation with the patient and build familiarity with him. The patient shares memories of his partner. It is obvious that he misses his time with her, but has no current memory of her. While she indulges him to dive deep into his past with a hope to rekindle the present, it takes no time for him to dismiss her efforts as a disturbance or even engage in violent and disruptive behaviour.
The day progresses with usual care provision activities. Significantly, the audience does not get any information on self-care activities of the care provider apart from a hint at a hurried shower. It is also evident that there is no third person in the household to share care provision or even overseeing. This denies periods of rest for the caregiver further aggravating her personal physical conditions apart from affecting mental health.
The progress of the play has nothing dramatic apart from episodes of violent behaviour. On the contrary it is slow, often predictable and laboriously repetitive. While the predictable and repetitive routine is helpful for care provision of patients with dementia, nurturing familiarity and obtaining cooperation, the drudgery to family caregivers is immense. It goes to a point where the caregiver gets so used to the repetitiveness that they make efforts to avoid variety. They live under the surety of the inevitable, building a safe space for themselves, further avoiding any diversity in their own lives.
The play ends when the caregiver comes back for a second time and is faced with the same question, “Do I know you?” She responds with the same answer, “No, you don’t know me. I am your new nurse.” The narrative does not reveal the relationship of the care provider with the patient as if that is not important at all. This highlights the primacy of the caregiver’s role and identity as a caregiver, subjugating all other identities and relationships. For an extended period, the caregiver has no other role in life than caregiving. By the time the period ends, it is too late to live a life or another role.
Conclusion
Theatre as a medium may not provide the right answers, but is a very potent tool to ask the right questions. Theatre has the ability to strongly raise issues and initiate discourses in issues. While scientific evidence may take years of rigorous research, plays like ‘Again’ build on anecdotal evidence and help in agenda setting for policy makers. Apart from its artistic value, ‘Again’ could be used as lecture demonstrations for healthcare providers to demonstrate issues about family caregivers of elderly patients of dementia. It could also be used in patient support groups and community settings to encourage experience sharing by family caregivers to enable formulation of adequate psycho-social support plans by formal care providers.
‘Again’ highlights the usefulness of theatre as a powerful medium to be integrated into care and support plans for geriatric mental health care, taking a comprehensive look at the patient and the care provider.
About the Author
Shomik Ray (he/him) is a writer, director, educator, and Professor of Public Health Practice at the Public Health Foundation of India. He has worked on various public health programmes including, HIV/AIDS and health sector support programs at district, state, and national levels. He is also the founder-director of Shapno Ekhon, a theatre and heritage education platform based in New Delhi.
References
Bramhankar, Mohan, and Meena Dhar. “Diseases Burden and Epidemiological Transition Status at the National and Sub-national Level in India: A Contemporary Perspective.” Discover Public Health 22, no. 1 (2025): 63. https://doi.org/10.1186/s12982-025-00453-5.
Ciccacci, Fabio, Silvia Orlando, Nabila Majid, and Cristina Marazzi. “Epidemiological Transition and Double Burden of Diseases in Low-Income Countries: The Case of Mozambique.” Pan African Medical Journal 37 (2020): 49. https://doi.org/10.11604/pamj.2020.37.49.23310.
Committee on Family Caregiving for Older Adults, Board on Health Care Services, Health and Medicine Division, National Academies of Sciences, Engineering, and Medicine. Families Caring for an Aging America. Edited by Richard Schulz and Jill Eden. Washington, DC: National Academies Press, 2016.
Gallant, Mary P., and Cathleen M. Connell. “Predictors of Decreased Self-Care among Spouse Caregivers of Older Adults with Dementing Illnesses.” Journal of Aging and Health 9, no. 3 (1997): 373–95. https://doi.org/10.1177/089826439700900306.
Gibbons, Susanne W., Ann Ross, and Michelle Bevans. “Liminality as a Conceptual Frame for Understanding the Family Caregiving Rite of Passage: An Integrative Review.” Research in Nursing & Health 37, no. 5 (2014): 423–36. https://doi.org/10.1002/nur.21622.
Penrod, Janice, Judith E. Hupcey, Beverly L. Baney, and Susan J. Loeb. “End-of-Life Caregiving Trajectories.” Clinical Nursing Research 20, no. 1 (2011): 7–24. https://doi.org/10.1177/1054773810384852.
Peacock, Shelley C., Karla Hammond-Collins, and Deborah A. Forbes. “The Journey with Dementia from the Perspective of Bereaved Family Caregivers: A Qualitative Descriptive Study.” BMC Nursing 13, no. 1 (2014): 42. https://doi.org/10.1186/s12912-014-0042-x.
Schulz, Richard, and Scott R. Beach. “Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study.” JAMA 282, no. 23 (1999): 2215–19. https://doi.org/10.1001/jama.282.23.2215.
Wilcox, Sara, and Abby C. King. “Sleep Complaints in Older Women Who Are Family Caregivers.” Journal of Gerontology: Psychological Sciences and Social Sciences 54B, no. 3 (1999): P189–98. https://doi.org/10.1093/geronb/54b.3.p189.
World Health Organization. Mental Health of Older Adults. 2025a. https://www.who.int/news-room/fact-sheets/detail/mental-health-of-older-adults (accessed May 12, 2025).
World Health Organization. Dementia. 2025. https://www.who.int/news-room/fact-sheets/detail/dementia (accessed May 12, 2025b).
Yadav, Jitender, Sameer Allarakha, Denny John, G. R. Menon, C. Venkateswaran, and Ritu Singh. “Catastrophic Health Expenditure and Poverty Impact Due to Mental Illness in India.” Journal of Health Management 25, no. 1 (2023): 8–21. https://doi.org/10.1177/09720634231153210.
