There is no organised, public service delivery system in India that specifically addresses long-term care needs. However, several governmental policies and programmes enshrine the principles and components of long-term care, outlining services for chronic illness, injury, disability, and aging. Some examples include the National Mental Health Programme (2017), which supports long-term treatment and rehabilitation for persons with mental illness and the National Programme for Palliative Care (2012), which outlines care for persons with terminal cancer and AIDS.

There are also governmental initiatives targeted for the welfare of older individuals. The National Policy for Older Persons, formulated in 1999, affirms the government’s commitment to the well-being of older persons, and outlines the responsibilities of the family and the State in providing care for the elderly. The goals set out in the policy are operationalised through several programmes and schemes. For instance, the Integrated Programme for Older Persons (IPOP) initiated by the Ministry of Social Justice and Empowerment (MSJE) in 1992, and revised in 2018, offers financial support to governmental and non-governmental organisations providing basic services (food, shelter and healthcare) and institutional and non-institutional care for older persons, encouraging active and productive aging, and engaging in activities including research and advocacy (Ministry of Social Justice and Empowerment (MSJE), 2016; 2018a). In addition, the National Programme for Healthcare of the Elderly (Ministry of Health and Family Welfare (MoHFW), 2011), launched in 2010, aims to provide long-term, comprehensive, and dedicated care services to older people in ways that are affordable and accessible. This programme lists out strategies for preventive, promotive, curative and rehabilitative healthcare for older people, through its integration with the public healthcare systems at primary and secondary levels, as well as the setting up of specialized geriatric medical services at tertiary levels. More recently, the government has re-affirmed its commitment to senior citizens by announcing the implementation of an umbrella scheme known as Atal Vayo Abhyudaya Yojana (AVYAY) (MSJE, 2022). This scheme converges some existing schemes and programmes such as the Rashtriya Vayoshri Yojana (MSJE, 2022).

The limited long-term care services provided by the public health care system include nursing homes and other residential care facilities, day-care centres, and geriatric care in selected public hospitals (Ponnuswami & Rajasekaran, 2017; Sharma & Marwah, 2017). However, as in many developing countries, much of the long-term care mechanisms in India are institutionalised under the healthcare system, with its limited resources and functional capacities (UNESCAP, 2016). For instance, in psychiatric hospitals across the country, many “long-stay” patients are abandoned by families unable to care for them. With the absence of State-run long-term care facilities, hospitals play a custodial role for such patients (Daund et al., 2018). A survey of 43 mental hospitals across India, reported that over 36% of patients had been residing in the facilities for a year or longer, with a large number spending over 25 years in the hospital (Narasimhan, et al., 2019).

In the context of a limited number of long-term care facilities, and healthcare systems struggling to fill this gap, long-term care for older persons is mostly provided by the family. Sociocultural norms and traditions dictate family care for older persons, and the State enforces it by law (United Nations Department of Economic and Social Affairs, 2015). The Maintenance and Welfare of Parents and Senior Citizens Act, 2007 (Ministry of Law and Justice, 2007) defines the obligation of children and relatives in the maintenance of the older person, including the provision of food, clothing, residence, and medical attendance and treatment. According to this law, abandonment or failure to provide for a parent or older person is punishable by fine and imprisonment. Therefore, much of the long-term care in India is provided through unpaid care work by family members (UNESCAP, 2016).

A recent review suggested that a home-care model has several advantages to a hospital-based or nursing home-based model of care in India, as it is less expensive and more attractive to the service users, reducing inappropriate admissions, improving quality of life, and decreasing dependence on resources (Goel & Ramavat, 2018). However, the mere presence of home carers does not assure quality of care and must be supplemented with state-sponsored, integrated health care services to help older people and their carers, and ensure continuity of care (Bhattacharya & Chatterjee, 2017).

Care for older persons is primarily provided by the extended family. Institutional and state support are considered as alternatives for persons in exceptional circumstances such as when they are chronically/terminally ill, bed-bound, or without family support, and under the National Policy on Older Persons (NPOP). Public hospitals carry primary responsibility of care for such persons, with assistance from public charities and voluntary organisations (UNESCAP, 2016).

Traditionally, old age homes were meant for the poor and were mostly run by charities, but more recently, paid services have emerged to cater to older persons from the upper and middle class, who can afford them (Datta, 2017). There is also significant variability in the availability of services across the country due to inter-state differences in demographic characteristics, availability of eldercare infrastructure, and other contexts (Bhattacharya & Chatterjee, 2017).

The central (federal) government relies on the state governments to implement its policies and programmes for the welfare of older people. Programmes such as the National Programme for Health Care for the Elderly (NPHCE), while being novel and comprehensive, have been criticised for failing to consider regional disparities that could possibly impede implementation (Verma & Khanna, 2013). While most states have begun implementing the policies with enthusiasm, the measures adopted, and the standards of implementation are not uniform. Indeed, some states are yet to begin implementation due to financial and operational difficulties (United Nations Population Fund, 2017)

Moreover, UNESCAP (2016) lists other potential barriers to long-term care. Public and private hospitals are not equipped to provide long-term care. The private sector does not encourage patients with long standing illness or functional decline, especially in old age homes. The management tends to request the family/next of kin to withdraw from the service as they are ill-equipped and not trained to provide care for severe health conditions. The Indian health care system lacks financial mechanisms to support long-term care. Most of the hospices available are cancer-oriented which lack expertise to care for people with other illnesses.

References:

Bhattacharya, T. and Chatterjee, S. C. (2017). Exploring elder care in different settings in West Bengal: a psycho-social study of private homes, hospitals and long-term care facilities. International Journal of Psychological & Behavioural Sciences, 11(6), 1639-44

Datta A. (2017) Old Age Homes in India: Sharing the Burden of Elderly Care with the Family. In: Irudaya Rajan S., Balagopal G. (eds) Elderly Care in India. Springer, Singapore

Daund, M., Sonavane, S., Shrivastava, A., Desousa, A., & Kumawat, S. (2018). Mental Hospitals in India: Reforms for the future. Indian Journal of Psychiatry, 60(Suppl 2), S239.

Goel, A. & Ramavat, A. S. (2018). Absence of a formal long-term healthcare system for a rapidly ageing population is likely to create a crisis situation in the near future. Natl Med J India, 31, 1034.

Khurana, M. (2013). COVER STORY: Reaching the Unreached in Uttarakhand Donations to HelpAge India for Uttarakhand Flood Relief are eligible for 50% tax exemption under section 80G of Income Tax Act 1961. (Applicable in India only) (Vol. 12).

Kumar, P., Das, A., & Rautela, U. (2012). Mental and Physical Morbidity in Oldage Homes of Lucknow, India. DELHI PSYCHIATRY JOURNAL.

Ministry Of Health And Family Welfare (MHFW). (2011). OPERATIONAL GUIDELINES National Programme For Health Care Of The Elderly (NPHCE). Available from https://main.mohfw.gov.in/organisation/Departments-of-Health-and-Family-Welfare/national-programme-health-care-elderly-nphce

Ministry of Law and Justice. (2007). Maintenance and welfare of parents and senior citizens Act. Government of India.

Ministry of Social Justice & Empowerment (MSJE). (2018a). Integrated Programme for Senior Citizens. New Delhi. Government of India. Available from: http://socialjustice.nic.in/writereaddata/UploadFile/IPSrC%20English%20version.pdf

Ministry of Social Justice and Empowerment (MSJE). (2016). INTEGRATED PROGRAMME FOR OLDERPERSONS A Central Sector Scheme to improve the quality of life of the Older Persons. New Delhi . Available from: http://socialjustice.nic.in/writereaddata/UploadFile/IPOP%202016%20pdf%20document.pdf

Ministry of Social Justice and Empowerment (MSJE). (2022). Scheme for Welfare of Senior Citiizens. Press Information Bureau. Available from: https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1806506

Ministry of Statistics and Programme Implementation (2016). Elderly in India – Profile and Programmes 2016 New Delhi Central Statistics Office, Government of India:26–9

Narasimhan, L., Mehta, SM., Ram, K., Gangadhar, B.N., Thirthalli, J., Th­anapal, S., Desai, N., Gajendragad, J., Yannawar, P., Goswami, M., Sharma, C., Ray, R., Talapatra, S., Chauhan, A., Bhatt, D., Neuville, E., Kumar, KVK., Parasuraman, S., Gopikumar, V. and NILMH Collaborators Group. (2019). National Strategy for Inclusive and Community Based Living for Persons with Mental Health Issues. Th­e Hans Foundation: New Delhi

National Mental Health Programme. (2017). The Mental Health Care Act. Available from: https://www.nhp.gov.in/national-mental-health-programme_pg

Ponnuswami, I., & Rajasekaran, R. (2017). Long-term care of older persons in India: Learning to deal with challenges. International Journal on Ageing in Developing Countries (Vol. 2). Available from: https://www.inia.org.mt/wp-content/uploads/2017/09/2.1-8-India-59-to-71-1-rev-RFB.pdf

Sharma, R. & Marwah, E. B. (2017). Rising demand for community based long-term care services for senior citizens in India. Indian Journal of Gerontology, 31 (4), 519-528.

UNESCAP. (2016). Long-term Care of Older Persons in India. Working Paper Ageing Long Term Care India v1-2.

United Nations Department of Economic and Social Affairs. (2015). GROWING NEED FOR LONG-TERM CARE. Available from: https://www.un.org/esa/socdev/ageing/documents/un-ageing_briefing-paper_Long-term-care.pdf

United Nations Population Fund. (2017). ‘Caring for Our Elders: Early Responses’ – India Ageing Report – 2017. UNFPA, New Delhi, India

Verma, R., & Khanna, P. (2013). National program of health-care for the elderly in India: A hope for healthy ageing. International Journal of Preventive Medicine, 4(10), 1103–1107. Available from: http://www.ncbi.nlm.nih.gov/pubmed/24319548