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The legislative and political contexts surrounding dementia care in India

Published online by Cambridge University Press:  03 November 2008

BIANCA R. BRIJNATH
BIANCA R. BRIJNATH*
Affiliation:
School of Psychology, Psychiatry and Psychological Medicine, Monash University, Australia.
*
Address for correspondence: Bianca Brijnath, Social Sciences and Health Research Unit, School of Psychology, Psychiatry and Psychological Medicine, Monash University (Caulfield Campus), 900 Dandenong Road, Victoria 3145, Australia. Email: bianca.brijnath@med.monash.edu.au
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Abstract

Currently there is no specific policy on dementia care in India. Rather, the responsibility for care for people with dementia is not clearly articulated and formal care services straddle mental health and aged care. The result is that much care is placed upon individual families. This paper critically reviews Indian legislative and policy documents on this field of care, namely, the Mental Health Act 1987, the National Mental Health Programme, the National Policy on Older Persons and the Senior Citizen's Act 2007. The invisibility of dementia care in public policy translates into the absence of adequate treatment facilities and mental health staff, and leaves informal care-giving unsupported. This gap is replicated in mental health and dementia-care research and literature in India, with little being known about how family carers respond to the experiences of care-giving, manage the stigma, and access support. As India, like other middle-income and low-income countries, is experiencing an increase in its older population, more research is needed to develop the epidemiological, medical and anthropological understanding of ageing, dementia and care. This knowledge is vital to understanding the cultural context of the disease and must also be incorporated into public health policy if there is to be effective management of the rising need for personal care.

Keywords

Indiadementiacarepolicymental healthageing
Type
Research Article
Information
Ageing & Society , Volume 28 , Issue 7 , October 2008 , pp. 913 - 934
Copyright
Copyright © 2008 Cambridge University Press

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References

Agarwal, S. P., Ichhpujani, R. L., Shrivastava, S. and Goel, D. S. 2004. Restructuring the national mental health programme. In Agarwal, S. P. (ed.) Mental Health: An Indian Perspective 1946–2003. Ministry of Health and Family Services, New Delhi, 120–2.Google Scholar
Annerstedt, L., Elmstahl, S., Ingvad, B. and Samuelsson, S. M. 2000. Family caregiving in dementia: an analysis of the caregiver's burden and the ‘breaking-point’ when home care becomes inadequate. Scandinavian Journal of Public Health, 28, 1, 23–31.Google ScholarPubMed
Bhat, A. K. and Dhruvarajan, R. 2001. Ageing in India: drifting intergenerational relations, challenges and options. Ageing & Society, 21, 5, 621–40.CrossRefGoogle Scholar
Bhore, J. 1946. Report of the Health Survey and Development Committee. Volume 2, Government of India, New Delhi.Google Scholar
Braekhus, A., Oksengard, A. R., Engedal, K. and Laake, K. 1998. Social and depressive stress suffered by spouses of patients with mild dementia. Scandinavian Journal of Public Health, 16, 4, 242–6.Google ScholarPubMed
Brundtland, G. H. 2000. Mental health in the 21st century. Bulletin of the World Health Organisation, 78, 4, 411.Google ScholarPubMed
Census of India 2006. Population Projections for India and States 2001–2026. Office of the Registrar General and Census Commissioner, India, New Delhi.Google Scholar
Chandra, V., Ganguli, M., Pandav, R., Johnston, J., Belle, S. and DeKosky, S. T. 1998. Prevalence of Alzheimer's disease and other dementias in rural India: the Indo-US study. Neurology, 51, 4, 1000–8.CrossRefGoogle ScholarPubMed
Channabasavanna, S. M. and Murthy, P. 2004. The national human rights commission report 1999: a defining moment. In Agarwal, S. P. (ed.) Mental Health: An Indian Perspective 1946–2003. Ministry of Health and Family Services, New Delhi, 108–12.Google Scholar
Chisholm, D., Sekar, K., Kumar, K. K., Saeed, K., James, S., Mubbashar, M. and Murthy, R. S. 2000. Integration of mental-health care into primary care: demonstration cost-outcome study in India and Pakistan. British Journal of Psychiatry, 176, 6, 581–8.CrossRefGoogle ScholarPubMed
Cohen, L. 1995 a. The epistemological carnival: meditations on disciplinary intentionality and ayurveda. In Bates, D. (ed.) Knowledge and the Scholarly Medical Traditions. Cambridge University Press, Cambridge, 320–43.CrossRefGoogle Scholar
Cohen, L. 1995 b. Toward an anthropology of senility: anger, weakness, and Alzheimer's in Banaras, India. Medical Anthropology Quarterly, 9, 3, 314–34.CrossRefGoogle ScholarPubMed
Cohen, L. 1998. No Aging in India: Alzheimer's, the Bad Family, and Other Modern Things. University of California Press, Berkeley, California.Google Scholar
Cummings, J. L. 2004 a. Alzheimer's disease. New England Journal of Medicine, 351, 1, 56–67.CrossRefGoogle ScholarPubMed
Cummings, J. L. 2004 b. Treatment of Alzheimer's disease: current and future therapeutic approaches. Reviews in Neurological Diseases, 1, 2, 60–9.Google ScholarPubMed
Dharmalingam, A. 1994. Old age support: expectations and experiences in a south Indian village. Population Studies, 48, 1, 5–19.CrossRefGoogle Scholar
Directorate General of Health Services 2003. National List of Essential Medicines 2003. Ministry of Health and Family Welfare, Government of India, New Delhi.Google Scholar
Emmatty, L. M., Bhatti, R. S. and Mukalel, M. T. 2006. The experience of burden in India: a study of dementia caregivers. Dementia, 5, 2, 223–32.CrossRefGoogle Scholar
Ferri, C., Chisholm, D., Van Ommeren, M. and Prince, M. 2004. Resource utilisation for neuropsychiatric disorders in developing countries: a multinational Delphi consensus study. Social Psychiatry and Psychiatric Epidemiology, 39, 3, 218–27.CrossRefGoogle ScholarPubMed
Ferri, C. P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., Hall, K., Hasegawa, K., Hendrie, H., Huang, Y., Jorm, A., Mathers, C., Menezes, P. R., Rimmer, E., Scazufca, M. and Alzheimer's Disease International 2005. Global prevalence of dementia: a Delphi consensus study. The Lancet, 366, 9503, 2112.CrossRefGoogle ScholarPubMed
Gandevia, K. Y. 1993. Community mental health: a historical overview of past and present interventions. In Mane, P. and Gandevia, K. Y. (eds) Mental Health in India: Issues and Concerns. Tata Institute of Social Sciences, Bombay, 144–71.Google Scholar
Goel, D. S., Agarwal, S. P., Ichhpujani, R. L. and Shrivastava, S. 2004. Mental health 2003: the Indian scene. In Agarwal, S. P. (ed.) Mental Health: An Indian Perspective 1946–2003. Ministry of Health and Family Services, New Delhi, 3–24.Google Scholar
Government of India 1985. Seventh Five Year Plan (1985–1990). Planning Commission, Yojana Bhavan, New Delhi. Available online at http://planningcommission.nic.in/plans/planrel/fiveyr/default.html [Accessed February 2008].Google Scholar
Government of India 1987. The Mental Health Act. Ministry of Law and Justice, New Delhi.Google Scholar
Government of India 1990. The Central Mental Health Authority Rules 1990. G.S.R. 1004 (E). Central Mental Health Authority, Government of India, New Delhi.Google Scholar
Government of India 1999. The National Policy on Older Persons. Ministry of Social Justice and Empowerment, Shastri Bhavan, New Delhi.Google Scholar
Government of India 1997. 9th Five Year Plan (1997–2002). Planning Commission, Yojana Bhavan, New Delhi.Google Scholar
Government of India 2002. 10th Five Year Plan (2002–2007). Planning Commission, Yojana Bhavan, New Delhi.Google Scholar
Government of India 2006. The Senior Citizens (Maintenance, Protection and Welfare) Bill. Rajya Sabha, New Delhi.Google Scholar
Government of India 2007. The Maintenance and Welfare of Parents and Senior Citizens Act. Ministry of Law and Justice, New Delhi.Google Scholar
Government of India 2007. 11th Five Year Plan (2007–2011). Planning Commission, Yojana Bhavan, New Delhi.Google Scholar
Gururaj, G., Girish, N. and Issac, M. K. 2005. Mental, neurological and substance abuse disorders: Strategies towards a systems approach. In National Commission on Macroeconomics and Health Background Papers, Burden of Disease in India. Equitable Development: Healthy Future. Ministry of Health and Family Welfare, Government of India, New Delhi, 226–50.Google Scholar
Gururaj, G. and Issac, M. K. 2004. Psychiatric epidemiology in India: moving beyond numbers. In Agarwal, S. P. (ed.) Mental Health: An Indian Perspective 1946–2003. Ministry of Health and Family Services, New Delhi, 37–61.Google Scholar
Hux, M. J., O'Brien, B. J., Iskedjian, M., Goeree, R., Gagnon, M. and Gauthier, S. 1998. Relation between severity of Alzheimer's disease and costs of caring. Canadian Medical Association Journal, 159, 5, 457–65.Google ScholarPubMed
Jamuna, D. 2003. Issues of elder care and elder abuse in the Indian context. Journal of Aging and Social Policy, 15, 2/3, 125.CrossRefGoogle ScholarPubMed
Knapp, M., Funk, M., Curran, C., Prince, M., Grigg, M. and McDaid, D. 2006. Economic barriers to better mental health practice and policy. Health Policy and Planning, 21, 3, 157–70.CrossRefGoogle ScholarPubMed
Kumar, G. S. J. 1996. The aged and aged disabled: the Indian scene. International Review of Modern Sociology, 26, 1, 81–90.Google Scholar
Mahajan, S. 2006. Problems of urban senior citizens in India. Indian Journal of Social Research, 47, 1, 63–73.Google Scholar
McCabe, L. F. 2006. The cultural and political context of the lives of people with dementia in Kerala, India. Dementia, 5, 1, 117–36.CrossRefGoogle Scholar
Meller, S. 2001. A comparison of the well-being of family caregivers of elderly patients hospitalized with physical impairments versus the caregivers of patients hospitalized with dementia. Journal of the American Medical Directors Association, 2, 2, 60–5.CrossRefGoogle ScholarPubMed
Mills, J. 2006. Modern psychiatry in India: the British role in establishing an Asian system, 1858–1947. International Review of Psychiatry, 18, 4, 333.CrossRefGoogle ScholarPubMed
Murthy, R. S. 2004. The national mental health programme: progress and problems. In Agarwal, S. P. (ed.) Mental Health: An Indian Perspective 1946–2003. Ministry of Health and Family Services, New Delhi, 75–91.Google Scholar
National Human Rights Commission of India 1999. Quality Assurance in Mental Health. National Human Rights Commission of India, New Delhi.Google Scholar
Patel, V., Araya, R., de Lima, M., Ludermir, A. and Todd, C. 1999. Women, poverty and common mental disorders in four restructuring societies. Social Science and Medicine, 49, 11, 1461–71.CrossRefGoogle ScholarPubMed
Patel, V., Kirkwood, B. R., Pednekar, S., Weiss, H. and Mabey, D. 2006. Risk factors for common mental disorders in women. Population-based longitudinal study. British Journal of Psychiatry, 189, 547–55.CrossRefGoogle ScholarPubMed
Patel, V., Pereira, J., Coutinho, L., Fernandes, R., Fernandes, J. and Mann, A. 1998. Poverty, psychological disorder and disability in primary care attenders in Goa, India. British Journal of Psychiatry, 172, 533–6.CrossRefGoogle ScholarPubMed
Patel, V. and Prince, M. 2001. Ageing and mental health in a developing country: who cares? Qualitative studies from Goa, India. Psychological Medicine, 31, 1, 29–38.CrossRefGoogle Scholar
Patel, V. and Varghese, M. 2004. NGOs and mental health: search for synergy. In Agarwal, S. P. (ed.) Mental Health: An Indian Perspective 1946–2003. Ministry of Health and Family Services, New Delhi, 145–51.Google Scholar
Prakash, I. J. 1999. Ageing in India. World Health Organisation, Geneva.Google Scholar
Prince, M. and Trebilco, P. 2005. Mental-health services for older people: a developing countries perspective. In Draper, B., Melding, P. and Brodaty, H. (eds) Psychogeriatric Service Delivery. Oxford University Press, Oxford, 33–54.CrossRefGoogle Scholar
Raguram, R., Venkateswaran, A., Ramakrishna, J. and Weiss, M. G. 2002. Traditional community resources for mental health: a report of temple healing from India. British Medical Journal, 325, 7354, 38–40.CrossRefGoogle ScholarPubMed
Rajkumar, S. and Kumar, S. 1996. Prevalence of dementia in the community: a rural-urban comparison from Madras, India. Australian Journal on Ageing, 15, 2, 9–13.CrossRefGoogle Scholar
Rajya Sabha [Upper House of Parliament] 2007. Sushma Swaraj. Members Website, Rajya Sabha, New Delhi. Available online at http://164.100.24.167:8080/members/website/Mainweb.asp?mpcode=94 [Accesssed 3rd May 2007].Google Scholar
Rastogi, P. 2005. Mental Health Act 1987: an analysis. Journal of the Indian Academy of Forensic Medicine, 27, 3, 176–9.Google Scholar
Shah, A., Murthy, S. and Suh, G.-K. 2002. Is mental health economics important in geriatric psychiatry in developing countries? International Journal of Geriatric Psychiatry, 17, 8, 758–64.CrossRefGoogle ScholarPubMed
Shaji, K., Smitha, K., Lal, K. P. and Prince, M. J. 2003. Caregivers of people with Alzheimer's disease: a qualitative study from the Indian 10/66 dementia research network. International Journal of Geriatric Psychiatry, 18, 1, 1–6.CrossRefGoogle ScholarPubMed
Shaji, S., Bose, S. and Verghese, A. 2005. Prevalence of dementia in an urban population in Kerala, India. British Journal of Psychiatry, 186, 136–40.CrossRefGoogle Scholar
Standing Committee on Health and Family Welfare, Parliament of India 2004. First Report on Demands for Grants 2004–2005 (Demand 47) of the Department of Health (Ministry of Health and Family Welfare), Parliament of India, New Delhi, paragraph 2.3. Available online at http://rajyasabha.nic.in/book2/reports/health/1streport.htm [Accessed 21 February 2008].Google Scholar
Thara, R., Padmavati, R. and Srinivasan, T. N. 2004. Focus on psychiatry in India. British Journal of Psychiatry, 184, 366–73.CrossRefGoogle ScholarPubMed
The 10/66 Dementia Research Group 2004. Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19, 2, 170–7.CrossRefGoogle Scholar
Varghese, M. and Patel, V. 2004. The greying of India: mental health perspective. In Agarwal, S. P. (ed.) Mental Health: An Indian Perspective 1946–2003. Ministry of Health and Family Services, New Delhi, 240–8.Google Scholar
Vas, C. J., Pinto, C., Panikker, D., Noronha, S., Deshpande, N., Kulkarni, L. and Sachdeva, S. 2001. Prevalence of dementia in an urban Indian population. International Psychogeriatrics, 13, 4, 439–50.CrossRefGoogle Scholar
Weiss, M. G., Isaac, M., Parkar, S. R., Chowdhury, A. N. and Raguram, R. 2001. Global, national, and local approaches to mental health: examples from India. Tropical Medicine and International Health, 6, 1, 4–23.CrossRefGoogle ScholarPubMed
World Health Organisation (WHO) 2001. World Health Report – Mental Health: New Understanding, New Hope. WHO, Geneva.Google Scholar
WHO 2002. Global Burden of Disease Data. WHO, Geneva.Google Scholar
WHO 2004. Global Burden of Disease Estimates 2002. WHO, Geneva.Google Scholar
WHO 2005. Mental Health Atlas 2005. WHO, Geneva.Google Scholar
WHO Panel on Ageing and Social Development 2000. Social Development and Ageing: Crisis or Opportunity? Special panel at Geneva 2000. WHO, Geneva, 1–12. Available online at www.who.int/entity/ageing/publications/development/alc_social_development.pdf [Accessed 21 February 2008].Google Scholar
WHO-India 2007. WHO-India Collaboration: Core Programmes. WHO-India, New Delhi.Google Scholar