Hostname: page-component-586b7cd67f-tf8b9 Total loading time: 0 Render date: 2024-11-26T14:57:28.589Z Has data issue: false hasContentIssue false

Why does institutionalised care not appeal to Indian families? Legislative and social answers from urban India

Published online by Cambridge University Press:  09 June 2011

BIANCA BRIJNATH*
Affiliation:
Department of General Practice, Monash University, Melbourne, Australia.
*
Address for correspondence: Bianca Brijnath, Department of General Practice, Monash University, School of Primary Health Care, Building 1, 270 Ferntree Gully Rd, Notting Hill, Melbourne, Victoria 3168, Australia. E-mail: [email protected]

Abstract

In India, although notions of ageing and care are changing, there is a continued preference among families for home-based care of elderly relatives. The legislative policies and cultural practices that shape this preference will be examined in this paper with specific reference to aged-care facilities and the 2007 Maintenance and Welfare of Parents and Senior Citizens Act. Using qualitative data from a study on dementia care in urban India it will be shown how the Act and old-age homes are understood and experienced by Indian families and key service providers. In juxtaposing policy and practice it will be argued that while notions of care are being redefined by processes like migration and urbanisation, the preference for home care remains, indicating that existing services need to be re-oriented and expanded to support families in providing this care.

Type
Articles
Copyright
Copyright © Cambridge University Press 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Åberg, A. 2008. Care recipients’ perceptions of activity-related life space and life satisfaction during and after geriatric rehabilitation. Quality of Life Research, 17, 4, 509–20.CrossRefGoogle ScholarPubMed
Angen, M. J. 2000. Evaluating interpretive inquiry: reviewing the validity debate and opening the dialogue. Qualitative Health Research, 10, 3, 378–95.CrossRefGoogle ScholarPubMed
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. Scandanavian Journal of Public Health, 28, 1, 2331.Google ScholarPubMed
Askham, J., Briggs, K., Norman, I. and Redfern, S. 2007. Care at home for people with dementia: as in a total institution? Ageing & Society, 27, 1, 324.CrossRefGoogle Scholar
Auerbach, C. F. and Silverstein, L. B. 2003. Qualitative Data: An Introduction to Coding and Analysis. New York University Press, New York.Google Scholar
Australian Bureau of Statistics 2003. Ageing in Australia 2001, Catalogue 2048.0. In Census of Population and Housing 2001. Australian Bureau of Statistics, Canberra.Google Scholar
Banerjee, S., Murray, J., Foley, B. and Atkins, L. 2003. Predictors of institutionalisation in people with dementia. Journal of Neurology, Neurosurgery and Psychiatry, 74, 9, 1315–6.CrossRefGoogle 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
Bond, J. 2007. Quality of Life and Older People. McGraw-Hill International, Maidenhead, UK.Google Scholar
Bowen, G. A. 2008. Naturalistic inquiry and the saturation concept: a research note. Qualitative Research, 8, 1, 137–52.CrossRefGoogle Scholar
Braekhus, A., Oksengard, A. R., Engedal, K. and Laake, K. 1998. Social and depressive stress suffered by spouses of patients with mild dementia. Scandanavian Journal of Primary Health Care, 16, 4, 242–6.Google ScholarPubMed
Brodaty, H. and Green, A. 2002. Who cares for the carer? The often forgotten patient. Australian Family Physician, 31, 9, 833–6.Google ScholarPubMed
Brijnath, B. 2008. The legislative and political contexts surrounding dementia care in India. Ageing & Society, 28, 7, 913–34.CrossRefGoogle Scholar
Brijnath, B. Screening for dementia: fluidity and the MMSE in India. Transcultural Psychiatry, in press.Google Scholar
Brijnath, B. and Manderson, L. 2008. Discipline in chaos: Foucault, dementia and aging in India. Culture Medicine and Psychiatry, 32, 4, 607–26.CrossRefGoogle ScholarPubMed
Cannuscio, C., Block, J. and Kawachi, I. 2003. Social capital and successful aging: the role of senior housing. Annals of Internal Medicine, 139, 2, 395–9.CrossRefGoogle ScholarPubMed
Caron, C. D., Ducharme, F. and Griffith, J. 2006. Deciding on institutionalization for a relative with dementia: the most difficult decision for caregivers. Canadian Journal on Aging, 25, 2, 193205.CrossRefGoogle ScholarPubMed
Census of India 2001. 2006. Population Projections for India and States 2001–2026. Office of the Registrar General and Census Commissioner, New Delhi.Google Scholar
Cutchin, M. P. 2003. The process of mediated aging-in-place: a theoretically and empirically based model. Social Science and Medicine, 57, 6, 1077–90.CrossRefGoogle ScholarPubMed
Czymoniewicz-Klippel, M., Brijnath, B. and Crockett, B. 2010. Ethics and the promotion of inclusiveness within qualitative research: case examples from Asia and the Pacific. Qualitative Inquiry, 16, 5, 332–41.CrossRefGoogle Scholar
Daly, J., Willis, K., Small, R., Green, J., Welch, N., Kealy, M. and Hughes, E. 2007. A hierarchy of evidence for assessing qualitative health research. Journal of Clinical Epidemiology, 60, 1, 43–9.CrossRefGoogle ScholarPubMed
Dharmalingam, A. 1994. Old age support: expectations and experiences in a South Indian village. Population Studies, 48, 1, 519.CrossRefGoogle Scholar
Dias, A., Dewey, M. E., D'Souza, J., Dhume, R., Motghare, D. D., Shaji, K. S., Menon, R., Prince, M. and Patel, V. 2008. The effectiveness of a home care program for supporting caregivers of persons with dementia in developing countries: a randomised controlled trial from Goa, India. PLoS One, 3, 6, e2333.CrossRefGoogle ScholarPubMed
Eaker, E. D., Vierkant, R. A. and Mickel, S. F. 2002. Predictors of nursing home admission and/or death in incident Alzheimer's disease and other dementia cases compared to controls: a population-based study. Journal of Clinical Epidemiology, 55, 5, 462–8.CrossRefGoogle ScholarPubMed
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
Featherstone, M. and Hepworth, M. 1991. The mask of ageing and the postmodern life course. In Featherstone, M., Hepworth, M. and Turner, B. S. (eds), The Body: Social Process and Cultural Theory. Sage Publications, London, 371–89.CrossRefGoogle Scholar
Federal Interagency Forum on Aging-related Statistics. 2006. Older Americans Update 2006: Key Indicators of Wellbeing. US Government, Washington DC.Google Scholar
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. Lancet, 366, 9503, 2112–217.CrossRefGoogle ScholarPubMed
Government of India 1999. The National Policy on Older Persons. Ministry of Social Justice and Empowerment, Shastri Bhavan, New Delhi.Google Scholar
Hazan, H. 1994. Old Age: Constructions and Deconstructions. Cambridge University Press, Cambridge.CrossRefGoogle Scholar
HelpAge India 2009. Directory of Old Age Homes in India: Revised Edition. HelpAge India, New Delhi.Google Scholar
HelpAge India 2010. Annual Report 2009–2010. HelpAge India, New Delhi.Google Scholar
Herzfeld, M. 1987. Anthropology Through the Looking-glass: Critical Ethnography in the Margins of Europe. Cambridge University Press, Cambridge.Google Scholar
Hochschild, A. R. 1978. The Unexpected Community: Portrait of an Old Age Subculture. University of California Press, Berkeley.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 & Social Policy, 15, 2/3, 125.CrossRefGoogle ScholarPubMed
Johansson, K., Jospehsson, S. and Lilja, M. 2009. Creating possibilities for action in the presence of environmental barriers in the process of ‘ageing in place’. Ageing & Society, 29, 1, 4970.CrossRefGoogle Scholar
Kalavar, J. and Jamuna, D. 2008. Interpersonal relationships of elderly in selected old age homes in urban India. Interpersona, 2, 2, 193215.CrossRefGoogle Scholar
Kumar, G. S. J. 1996. The aged and aged disabled: the Indian scene. International Review of Modern Sociology, 26, 1, 8190.Google Scholar
Lamb, S. 2000. White Saris and Sweet Mangoes: Aging, Gender, and Body in North India. University of California Press, Berkeley.CrossRefGoogle Scholar
Lamb, S. 2005. Cultural and moral values surrounding care and (in)dependence in late life: reflections from India in an era of global modernity. Care Management Journals, 6, 2, 80–9.CrossRefGoogle Scholar
Lamb, S. 2009. Aging and the Indian Diaspora: Cosmopolitan Families in India and Abroad. Indiana University Press, Bloomington.Google Scholar
Lawton, J. 1998. Contemporary hospice care: the sequestration of the unbounded body and ‘dirty dying’. Sociology of Health & Illness, 20, 2, 121–43.CrossRefGoogle Scholar
Liebig, P. S. 2003. Old-age homes and services – old and new approaches to aged care. Journal of Aging & Social Policy, 15, 2, 159–78.CrossRefGoogle ScholarPubMed
Lloyd, L. 2000. Dying in old age: promoting well-being at the end of life. Mortality: Promoting the Interdisciplinary Study of Death and Dying, 5, 2, 171–88.CrossRefGoogle Scholar
Luppa, M., Luck, T., Brähler, E., König, H. and Riedel-heller, S. 2008. Prediction of institutionalisation in dementia. Dementia and Geriatric Cognitive Disorders, 26, 1, 6578.CrossRefGoogle ScholarPubMed
Mahajan, S. 2006. Problems of urban senior citizens in India. Indian Journal of Social Research, 47, 1, 6373.Google Scholar
Marcus, G. E. 1995. Ethnography in/of the world system: the emergence of multi-sited ethnography. Annual Review of Anthropology, 24, 95117.CrossRefGoogle Scholar
Markovic, M. 2006. Analyzing qualitative data: health care experiences of women with gynecological cancer. Field Methods, 18, 4, 413–29.CrossRefGoogle Scholar
Marshall, M. N. 1996. Sampling for qualitative research. Family Practice, 13, 6, 522–5.CrossRefGoogle ScholarPubMed
Mays, N. and Pope, C. 2000. Qualitative research in health care. Assessing quality in qualitative research. British Medical Journal, 320, 7226, 50–2.CrossRefGoogle 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
Milligan, C. 2009. There's No Place Like Home: Place and Care in an Ageing Society. Ashgate, Farnham, UK.Google Scholar
Ministry of Social Justice and Empowerment 2007 The Maintenance and Welfare of Parents and Senior Citizens Act. Government of India, New Delhi.Google Scholar
Ministry of Social Justice and Empowerment 2008. An Integrated Programme for Older Persons. Government of India, New Delhi.Google Scholar
Morse, J. M. 1995. The significance of saturation. Qualitative Health Research, 5, 2, 147–9.CrossRefGoogle Scholar
Oswald, F., Wahl, H.-W., Schilling, O., Nygren, C., Fänge, A., Sixsmith, A., Sixsmith, J., Széman, Z., Tomsone, S. and Iwarsson, S. 2007. Relationships between housing and healthy aging in very old age. The Gerontologist, 47, 1, 96107.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, 2938.CrossRefGoogle Scholar
Prakash, I. J. 1999. Ageing in India. WHO Ageing and Health Programme, Geneva.Google Scholar
Prince, M. J., Acosta, D., Castro-Costa, E., Jackson, J. and Shaji, K. S. 2009. Packages of care for dementia in low- and middle-income countries. PLoS Med, 6, 11, e1000176.CrossRefGoogle ScholarPubMed
Prince, M., Livingston, G. and Katona, C. 2007. Mental health care for the elderly in low-income countries: a health systems approach. World Psychiatry, 6, 1, 513.Google ScholarPubMed
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, 3354.CrossRefGoogle Scholar
Ryan, G. W. and Bernard, H. R. 2003. Techniques to identify themes. Field Methods, 15, 1, 85109.CrossRefGoogle Scholar
Shah, G., Veedon, R. and Vasi, S. 1995. Elder abuse in India. In Kosberg, J. I. and Garcia, J. L. (eds), Elder Abuse: International and Cross-cultural Perspectives. Haworth Press, New York, 101–18.Google Scholar
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, 16.CrossRefGoogle ScholarPubMed
Tobin, G. A. and Begley, C. M. 2004. Methodological rigour within a qualitative framework. Journal of Advanced Nursing, 48, 4, 388–96.CrossRefGoogle ScholarPubMed
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
Vatuk, S. 1990. ‘To be a burden on others’: dependency anxiety among the elderly in India. In Lynch, O. M. (ed.), Divine Passions: The Social Construction of Emotion in India. University of California Press, Berkeley, 6488.CrossRefGoogle Scholar
Whittemore, R., Chase, S. K. and Mandle, C. L. 2001. Validity in qualitative research. Qualitative Health Research, 11, 4, 522–37.CrossRefGoogle ScholarPubMed