Abstract
Dementia is set to be one of the most pressing chronic health challenges for India in the years to come. Culture, family systems, and socioeconomic resources are factors that play an important role in determining the nature and level of care received by an individual with dementia. An understanding of psychosocial perspectives on caregiving for neurodegenerative diseases is vital to devising and implementing policy that is grounded in a holistic understanding of the condition. Through exploration of these facets of caregiving, the authors highlight the experience of family carers, and argue for a greater contribution of the state in the care of individuals with dementia in India.
This is a preview of subscription content, log in via an institution to check access.
References
Adhikari, P. (2017). Geriatric health care in India – Unmet needs and the way forward. Archives of Medicine and Health Sciences, 5(1), 112–114. https://doi.org/10.4103/2321-4848.208215
Alzheimer’s & Related Disorders Society of India. (2018). Dementia India strategy report. Retrieved from https://www.alz.co.uk/sites/default/files/plans/Dementia-India-Strategy-2018.pdf
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Association.
Brijnath, B. (2012). Why does institutionalised care not appeal to Indian families? Legislative and social answers from urban India. Ageing and Society, 32, 697–717. https://doi.org/10.1017/S0144686X11000584
Brinda, E. M., Rajkumar, A. P., Enemark, U., Attermann, J., & Jacob, K. S. (2014). Cost and burden of informal caregiving of dependent older people in a rural Indian community. BMC Health Services Research, 14, 207–207. https://doi.org/10.1186/1472-6963-14-207
Central Statistics Office. (2011). Situation analysis of the elderly in India. Retrieved from http://mospi.nic.in/sites/default/files/publication_reports/elderly_in_india.pdf
Chandra, V. (2005). India. International Psychogeriatrics, 8(S3), 479–481. https://doi.org/10.1017/S104161029700389X
Cohen, L. (1995). Toward an anthropology of senility: Anger, weakness, and Alzheimer’s in Banaras, India. Medical Anthropology Quarterly, 9(3), 314–334. https://doi.org/10.1525/maq.1995.9.3.02a00030
Das, P. C., Kumar, P., Amar, A., & Dey, A. (2014). Dementia care in India: Issues & prospects. International Journal of Medicine and Pharmaceutical Sciences, 4, 2250–2249.
Dhar, V. E. (2011). Transnational caregiving: Part 1, caring for family relations across nations. Care Management Journals, 12(2), 60–71. https://doi.org/10.1891/1521-0987.12.2.60
Dias, A., Samuel, R., Patel, V., Prince, M., Parameshwaran, R., & Krishnamoorthy, E. (2004). The impact associated with caring for a person with dementia: A report from the 10/66 Dementia Research Group’s Indian network. International Journal of Geriatric Psychiatry, 19, 182–184. https://doi.org/10.1002/gps.1016
Emmatty, L. M., Bhatti, R. S., & Mukalel, M. T. (2006). The experience of burden in India: A study of dementia caregivers. Dementia, 5(2), 223–232. https://doi.org/10.1177/1471301206062251
Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners, 20(8), 423–428. https://doi.org/10.1111/j.1745-7599.2008.00342.x
Ferrant, G., Pesando, L. M., & Nowacka, K. (2014). Unpaid care work: The missing link in the analysis of gender gaps in labour outcomes. Retrieved from https://www.oecd.org/dev/development-gender/Unpaid_care_work.pdf
Gordon-Bouvier, E. (2019). Relational vulnerability: The legal status of cohabiting carers. Feminist Legal Studies, 27(2), 163–187. https://doi.org/10.1007/s10691-019-09404-3
Górska, S., Forsyth, K., & Maciver, D. (2018). Living with dementia: A meta-synthesis of qualitative research on the lived experience. The Gerontologist, 58(3), e180–e196. https://doi.org/10.1093/geront/gnw195
Government of India. (2007). The maintenance and welfare of parents and senior citizens act 2007. Ministry of Law and Justice.
Government of India. (2011). National programme for the health care of the elderly (operational guidelines). Ministry of Health and Family Welfare.
Government of India. (2019). Amendment to the The maintenance and welfare of parents and senior citizens act 2007. Ministry of Law and Justice.
Gupta, R. (2009). Systems perspective: Understanding care giving of the elderly in India. Health Care for Women International, 30(12), 1040–1054. https://doi.org/10.1080/07399330903199334
Gupta, R., & Pillai, V. K. (2012). Elder caregiving in south-Asian families in the United States and India. Social Work and Society, 10(2). http://nbn-resolving.de/urn:nbn:de:hbz:464-sws-260
HelpAge India. (2019). Is caregiving mainly a woman’s job? Retrieved from https://www.helpageindia.org/is-caregiving-mainly-a-womans-job/
Knapp, M., Comas-Herrera, A., Somani, A., & Banerjee, S. (2007). Dementia: International comparisons. Retrieved from London https://www.pssru.ac.uk/pub/dp2418.pdf
Knight, B. G., & Sayegh, P. (2010). Cultural values and caregiving: The updated sociocultural stress and coping model. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 65b(1), 5–13. https://doi.org/10.1093/geronb/gbp096
Kontos, P., & Martin, W. (2013). Embodiment and dementia: Exploring critical narratives of selfhood, surveillance, and dementia care. Dementia (London), 12(3), 288–302. https://doi.org/10.1177/1471301213479787
Kowal, P., Naidoo, N., & Chatterji, S. (2019). WHO’s study on global AGEing and adult health (SAGE). In D. Gu & M. Dupre (Eds.), Encyclopedia of gerontology and population aging. Springer.
Lamech, N., Raghuraman, S., Vaitheswaran, S., & Rangaswamy, T. (2017). The support needs of family caregivers of persons with dementia in India: Implications for health services. Dementia (London), 18(6), 2230–2243. https://doi.org/10.1177/1471301217744613
Lawrence, V., Samsi, K., Banerjee, S., Morgan, C., & Murray, J. (2010). Threat to valued elements of life: The experience of dementia across three ethnic groups. The Gerontologist, 51(1), 39–50. https://doi.org/10.1093/geront/gnq073
Mane, A. (2016). Ageing in India: Some social challenges to elderly care. Journal of Gerontology & Geriatric Research, 05. https://doi.org/10.4172/2167-7182.1000e136
Mograbi, D. C., Ferri, C. P., Sosa, A. L., Stewart, R., Laks, J., Brown, R., & Morris, R. G. (2012). Unawareness of memory impairment in dementia: A population-based study. International Psychogeriatrics, 24(6), 931–939. https://doi.org/10.1017/S1041610211002730
Mohan, R. R. (2015). Governmentality of ‘Elderly care’ in India: Mapping discourses.
Narayan, S. M., Varghese, M., Hepburn, K., Lewis, M., Paul, I., & Bhimani, R. (2015). Caregiving experiences of family members of persons with dementia in South India. American Journal of Alzheimer’s Disease and Other Dementias, 30(5), 508–516. https://doi.org/10.1177/1533317514567125
Patel, V., & Prince, M. (2001). Ageing and mental health in a developing country: Who cares? Qualitative studies from Goa, India. Psychological Medicine, 31(1), 29–38. https://doi.org/10.1017/s0033291799003098
Patil, A. (2018). Why caregiving needs to be ‘de-feminized’. Retrieved from https://www.whiteswanfoundation.org/caregiving/how-the-role-of-caring-disproportionately-burdens-women
Pattanayak, R. D., Jena, R., Tripathi, M., & Khandelwal, S. K. (2010). Assessment of burden in caregivers of Alzheimer’s disease from India. Asian Journal of Psychiatry, 3(3), 112–116. https://doi.org/10.1016/j.ajp.2010.06.002
Planning Commission – Government of India. (2013). Twelfth five year plan (2012–2017) – Social sectors. Sage.
Prince, M., & 10/66 Dementia Research Group. (2004). Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19(2), 170–177. https://doi.org/10.1002/gps.1046
Prince, M., Brodaty, H., Uwakwe, R., Acosta, D., Ferri, C. P., Guerra, M., … Liu, Z. (2012). Strain and its correlates among carers of people with dementia in low-income and middle-income countries. A 10/66 dementia research group population-based survey. International Journal of Geriatric Psychiatry, 27(7), 670–682. https://doi.org/10.1002/gps.2727
Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G., Brehaut, J., … Wood, E. (2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4, 1. https://doi.org/10.1186/1471-2431-4-1
Rajan, S. I., & Kumar, S. (2003). Living arrangements among Indian elderly: New evidence from national family health survey. Economic and Political Weekly, 38(1), 75–80.
Rao, G., & Bharath, S. (2013). Cost of dementia care in India: Delusion or reality? Indian Journal of Public Health, 57(2), 71–77. https://doi.org/10.4103/0019-557x.114986
Ritchie, L., Jack-Waugh, A., Sanatombi Devi, E., Binil, V., George, A., Henry, J., … Tolson, D. (2020). Understanding family carer experiences of advanced dementia caregiving in India: Towards a vision for integrated practice. Journal of Integrated Care, 28(4), 337–348. https://doi.org/10.1108/JICA-02-2020-0006
Shahly, V., Chatterji, S., Gruber, M. J., Al-Hamzawi, A., Alonso, J., Andrade, L. H., … Kessler, R. C. (2013). Cross-national differences in the prevalence and correlates of burden among older family caregivers in the World Health Organization world mental health (WMH) surveys. Psychological Medicine, 43(4), 865–879. https://doi.org/10.1017/S0033291712001468
Shaji, K. S., Arun Kishore, N. R., Lal, K. P., & Prince, M. (2002). Revealing a hidden problem. An evaluation of a community dementia case-finding program from the Indian 10/66 dementia research network. International Journal of Geriatric Psychiatry, 17(3), 222–225. https://doi.org/10.1002/gps.553
Shaji, K. S., George, R. K., Prince, M. J., & Jacob, K. S. (2009). Behavioral symptoms and caregiver burden in dementia. Indian Journal of Psychiatry, 51(1), 45–49. https://doi.org/10.4103/0019-5545.44905
Shaji, K. S., Smitha, K., Lal, K. P., & 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. https://doi.org/10.1002/gps.649
Singh, O. P. (2019). Neglect and abandonment of persons with dementia in India: Urgent need for residential and day-care facilities. Indian Journal of Psychiatry, 61(5), 429–430. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_507_19
Singh, S., Robertson, S., & Cabraal, A. (2012). Transnational family money: Remittances, gifts and inheritance. Journal of Intercultural Studies, 33(5), 475–492. https://doi.org/10.1080/07256868.2012.701606
Sowmini, C. V., & De Vries, R. (2009). A cross cultural review of the ethical issues in dementia care in Kerala, India and The Netherlands. International Journal of Geriatric Psychiatry, 24(4), 329–334. https://doi.org/10.1002/gps.2127
Tomita, M., Sarang, A., Lee, K.-F., Lee, K. S., Russ, L. S., & Noe, M. (2010). Characteristics and perceived supports of primary caregivers of home-based older adults with dementia in India, Taiwan, and the United States. Topics in Geriatric Rehabilitation, 26(1), 2–16. https://doi.org/10.1097/TGR.0b013e3181cd69ac
Twigg, J. & Martin, W. (2015) The challenge of cultural gerontology. The Gerontologist, 55(3), 353–359. https://doi.org/10.1093/geront/gnu061
Ugargol, A. P., & Bailey, A. (2018). Family caregiving for older adults: Gendered roles and caregiver burden in emigrant households of Kerala, India. Asian Population Studies, 14(2), 194–210. https://doi.org/10.1080/17441730.2017.1412593
Ugargol, A. P., & Bailey, A. (2020). Reciprocity between older adults and their care-givers in emigrant households of Kerala, India. Ageing and Society, 41, 1699–1725. https://doi.org/10.1017/S0144686X19001685
van Wijngaarden, E., Alma, M., & The, A.-M. (2019). ‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective. PLoS One, 14(4), e0214724. https://doi.org/10.1371/journal.pone.0214724
Wimo, A., Guerchet, M., Ali, G. C., Wu, Y. T., Prina, A. M., Winblad, B., … Prince, M. (2017). The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimer’s & Dementia, 13(1), 1–7. https://doi.org/10.1016/j.jalz.2016.07.150
World Health Organization. (2017). Global action plan on the public health response to dementia 2017–2025. Retrieved from https://www.who.int/mental_health/neurology/dementia/action_plan_2017_2025/en/
World Health Organization. (2019). Dementia. Retrieved from https://www.who.int/news-room/fact-sheets/detail/dementia
Author information
Authors and Affiliations
Corresponding author
Section Editor information
Rights and permissions
Copyright information
© 2022 Springer Nature Singapore Pte Ltd.
About this entry
Cite this entry
Bapat, D.A., Gandhi, P., Shankar, A. (2022). Psychosocial Perspectives on Dementia Care in the Indian Context. In: Handbook of Aging, Health and Public Policy. Springer, Singapore. https://doi.org/10.1007/978-981-16-1914-4_35-1
Download citation
DOI: https://doi.org/10.1007/978-981-16-1914-4_35-1
Received:
Accepted:
Published:
Publisher Name: Springer, Singapore
Print ISBN: 978-981-16-1914-4
Online ISBN: 978-981-16-1914-4
eBook Packages: Springer Reference Social SciencesReference Module Humanities and Social SciencesReference Module Business, Economics and Social Sciences