Patients with Dementia and Epilepsy: Does Family and Kinship Care Matters? — Oak Academic Publishing
Research ArticleOpen AccessGoogle Scholar indexed
Patients with Dementia and Epilepsy: Does Family and Kinship Care Matters?
Department of Medical Anthropology, Institute of Human Behavior and Allied Sciences (IHBAS) Hospital, Faculty of Medical Sciences, University of Delhi, GNCT Delhi Delhi, India
,
Department of Clinical Psychology, Institute of Human Behavior and Allied Sciences (IHBAS), Government of NCT Delhi, Delhi, India
,
Department of Social Work, Central University of Himachal Pradesh, Dhramshala, India
1 Department of Medical Anthropology, Institute of Human Behavior and Allied Sciences (IHBAS) Hospital, Faculty of Medical Sciences, University of Delhi, GNCT Delhi Delhi, India
2 Department of Clinical Psychology, Institute of Human Behavior and Allied Sciences (IHBAS), Government of NCT Delhi, Delhi, India
3 Department of Social Work, Central University of Himachal Pradesh, Dhramshala, India
Paper reports nine Case Studies each of epilepsy and dementia patients. Content analysis of family and kinship care in their families reveals significant issues of social stigma, marriage, school education, em ployment etc. among epilepsy patients as main concern while care of dementia patients in family concerns to spouse caring. It explores stigma affecting socio-cultural understanding of epilepsy and dementia. How these patients are cared within their family. Who care them most? It illuminates relevance of family and kinship care givers and recommend culturally appropriate interventions in community of such neuropsy chiatric diseases.
KeywordsEpilepsyDementiaFamily and Kinship Care
Burton, L. M., & Dilworth-Anderson, P. (1999). The intergenerational family roles of aged black Americans. Marriage and Family Review, 16, 311-322.
Brodaty, H., & Gresham, M. (1989). Effect of a training programme to reduce stress in cares of patients with dementia. British Medical Journal, 299, 1375-1379. doi:10.1136/bmj.299.6712.1375
Borneman, J. (1997). Caring and being cared for: Displacing the marriage, kinship, gender and sexuality. International Social Sciences Journal, 154, 573-584.
Chandra, V., Ganguli, M., Pandav, R., Johnston, J., Belle, S., & De Kosky, S. T. (1998). Prevalence of Alzheimer’s disease and other dementias in rural India: The Indo-US study. Neurology, 51, 1000-1008. doi:10.1212/WNL.51.4.1000
Chandra, V., Pandav, R., Laxminarayan, R., Tanner, C., Manyam, B., Rajkumar, S., Silberberg, D., Brayne, C., Chow, J., Herman, S., Hourihan, F., Kasner, S., Morillo, L., Ogunniyi, A., Theodore, W., & Zhang, Z. (2006). Neurological disorders, chapter-32 in mental health disorders. Geneva: DCPP, WHO, The International Bank for Reconstruction and Development/the World Bank.
Cohen, L. (1994). Old age: Cultural and critical perspectives. Annual Review of Anthropology, 23, 137-158. doi:10.1146/annurev.an.23.100194.001033
Cohen, L. (1998). No aging in India: Alzhiemer’s, the bad family, and other modern things. Berkeley, CA: Berkeley University of California Press. doi:10.1525/california/9780520083967.001.0001
Cohen, L. (2003). Is treating dementia ironic? In M. Lambek, & P. Anzte (Eds.), Illness and irony: On the ambiguity of suffering in culture (pp. 122-134). New York: Berghahn.
Cohen, L. (2008). Politics of care: Commentary on Janelle S. Taylor’s “on recognition caring, and dementia”. Medical Anthropology Quarterly, 22, 336-339.
Connell, C. M., & Gibson, G. D. (1997). Racial, ethnic, and cultural differences in dementia care giving: Review and analysis. Gerontologist, 37, 355-364. doi:10.1093/geront/37.3.355
Cox, C., & Monk, A. (1996). Strain among caregivers: Comparing the experiences of African American and Hispanic caregivers of Alzheimer’s relatives. International Journal of Aging and Human Development, 43, 93-105. doi:10.2190/DYQ1-TPRP-VHTC-38VU
Dilworth-Anderson, P., Williams, S. W., & Cooper, T. (1999). Family care giving to elderly African Americans: Caregiver types and structures. The Journals of Gerontology: Series B, 54, S237-S241. doi:10.1093/geronb/54B.4.S237
Dilworth-Anderson, P., Williams, I. C., & Gibson, B. E. (2002). Issues of race, ethnicity, and culture in care giving research: A 20-year re view (1980-2000). Gerontologist, 42, 237-272. doi:10.1093/geront/42.2.237
Fox, K., Hinton, W., & Levkoff, S. (1999). Take up the caregiver’s burden: Stories of the care for urban African American elders with dementia. Culture, Medicine and Psychiatry, 23, 501-529. doi:10.1023/A:1005520105518
Gourie-Devi, M., Gururaj, G., Satishchandra, P., & Subbhakrishna, D. K. (2004a). Prevalence of neurological disorders in Bangalore, India: A community-based study with a comparison between urban and rural area. Neuroepidemiology, 23, 261-268. doi:10.1159/000080090
Gourie-Devi, M., Gururaj, G. and Satishchandra, P. (2004b). Delivery of epilepsy care to the community: Towards the national epilepsy control programme. In S. P. Aggarwal (Ed.), Mental health—An Indian perspective (1946-2003) (pp. 295-305), New Delhi: DGHS, Ministry of H & FW.
Graham, J. E. (2006). Diagnosing dementia: Epidemiological and clinical data as cultural text, Chapter-4. In A. Leibing, & L. Cohn (Eds.), Thinking about dementia-culture, loss, and the anthropology of senility (pp. 80-105). New Brunswick, NJ: Rutgers Universe Press.
Haley, W. E., Roth, D. L., Coleton, M. I. et al. (1996). Appraisal, coping, and social support as mediators of well-being in black and white family caregivers of patients with Alzheimer’s disease. Journal of Consulting and Clinical Psychology, 64, 121-129. doi:10.1037/0022-006X.64.1.121
Hargrave, R. (2006). Caregivers of African-American elderly with dementia: A review and analysis. Annals of Long-Term Care, 14, 398 403
Haupt, M., Karger, A., & Janner, M. (2000). Improvement of agitation and anxiety in demented patients after psycho educative group inter vention with their caregivers. International Journal of Geriatric Psychiatry, 15, 1125-1129. doi:10.1002/1099-1166(200012)15:12 3.0.CO;2-F
Henderson, A. S., & Jorm, A. F. (2000). Definition of epidemiology of dementia: A review. In M. Mario, & N. Sartorius (Eds.), Dementia (pp. 1-34). West Sussex: John Wiley. doi:10.1002/0470842350.ch1
Hendrie, H. C., Osuntokun, B. O., Hall, K. S., Ogunniyi, A. O., Hui, S. L., Unverzagt, F. W. et al. (1995). Prevalence of Alzheimer’s disease and dementia in two communities: Nigerian Africans and African Americans. American Journal of Psychiatry, 152, 1485-1492.
Hinrichsen, G. A., & Ramirez, M. (1992). Black and white caregivers: A comparison of their adaption, adjustment, and service utilization. Gerontologist, 32, 279-381. doi:10.1093/geront/32.3.375
Hinton, L., Flores, Y., Franz, C., Hernadez, I., & Mitteeness, L. S. (2006). The borderlands of primary care: Physician and family perspective on “troublesome” behavior of people with dementia. Chapter 2. In A. Leibing, & L. Cohn (Eds.), Thinking about Dementia Culture, Loss, and the Anthropology of Senility (pp. 43-63). New Brunswick, NJ: Rutgers Universe Press.
Jorm, A. F., & Jolley, D. (1998). The incidence of dementia: A meta analysis. Neurology, 51, 728-733. doi:10.1212/WNL.51.3.728
Kauman, S. R. (2006). Dementia-near-death and “life itself”. Chapter 1. In A. Leibing, & L. Cohn (Eds.) Thinking about dementia-culture, loss, and the anthropology of senility (pp. 23-42). New Brunswick, NJ: Rutgers Universe Press.
Khurana, S., Bala, K., Singh, R., & Shrama, V. (2012). Childhood epilepsy: Knowledge, attitude and perception of the school teachers of Delhi. Abstract. In 56th Annual Conference of Indian Public Health Association (IPHA) for Public Health Priorities for the 12th Plan (p. 28). Kochi, 10-12 February 2012, Abstract No. 486.
Kleinman, A. (1995). The social course of epilepsy: Chronic illness as social experience in interior China, Chapter-7. In Writing at the mar gin-discourse between anthropology and medicine. Berkeley, CA: University of California Press.
Leibing, A., & Cohn, L. (2006). Thinking about dementia-culture, loss, and the anthropology of senility. New Brunswick, NJ: Rutgers Universe Press.
Lawton, M. P., Rajagopal, D., Brody, E., Kleban, M. H. (1992). The dynamics of caregiving for a demented elder among black and white families. The Journals of Gerontology, 42, S156-S164. doi:10.1093/geronj/47.4.S156
Lock, M., Llyod, S., & Prest, J. (2006). Genetic susceptibility and Alzheimer’s diseases. Chapter-6. In A. Leibing, & L. Cohn (Eds.), Thinking about Dementia-Culture, Loss, and the Anthropology of Senility (pp. 123-154). New Brunswick, NJ: Rutgers Universe Press.
Marriott, A., Donaldson, C., Tarrier, N., & Burns, A. (2000). Effectiveness of cognitive-behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer’s disease. British Journal of Psychiatry, 176, 557-562. doi:10.1192/bjp.176.6.557
Rajkumar, S., Kumar, S., & Thara, R. (1997). Prevalence of dementia in a rural setting: A report from India. International Journal of Geriatric Psychiatry, 12, 702-727. doi:10.1002/(SICI)1099-1166(199707)12:7 3.0.CO;2-H
Saillant, F., & Genset, S. (2007). Medical anthropology—Regional perspective and shared concerned (p. 27). USA: Blackwell Publishing.
Sharma, V., Singh, R., Talwar, U. K., & Bhargava, R. (2011). Ethical and legal issues related to dementia and epilepsy, Chapter-25. In V. Sharma, & S. Malhotra (Eds.), Clinical neuropsychology assessment and rehabilitation: A practical approach (pp. 363-376). Agra, UP: Harprasad Institute of Behavioral Sciences.
Singh, R., Bala, K., Jha, R. K., & Kumari, S. (2009a). Dementia and epilepsy: Family and kinship care analysis. Unpublished paper sub mitted to Panel on “medical pluralism, sectors of health care and health seeking behavior: Problems and prospective in the critical medical anthropology”. 16th world congress of International Union of Anthropological and Ethnological Sciences (IUAES 2009). Kunming, 27-31 July 2009, Yunnan.
Singh, R., Bala, K., Jha, R. K., & Talwar, U. K. (2009b). People living with epilepsy-narratives of OPD patients. Unpublished paper sub mitted to Panel on Public Health and Anthropology, 16th World Congress of The International Union of Anthropological and Ethno logical Sciences (IUAES 2008). Kunming, 27-31 July 2009.
Singh, R., Khurana, S., Bala, K., & Bhargava, V. (2011). Social, cultural and ethical issues in dementia, chapter-24. In V. Sharma, & S. Malhotra (Eds.), Clinical neuropsychology assessment and rehabilitation: A practical approach (pp. 352-362). Agra, UP: Harprasad Institute of Behavioral Sciences.
Singh, N., Sharma, V., & Singh, R. (2012a). Spiritual psychotherapy of caregivers of patients with epilepsy: An Indian perspective for care givers. Abstract. International Conference on Recent Advances in Cognition and Health (pp. 40-41). 23-24 January 2012, Varansai: Department of Psychology, SAP (DRS1), BHU.
Singh, N., Sharma, V., & Singh, R. (2012b). Care giver burden, per sonality characteristics and coping strategies of Care givers of patients with epilepsy. Abstract. International Conference on Recent Advances in Cognition and Health (pp. 40-41). 23-24 January 2012, Varansai: Department of Psychology, SAP (DRS1), BHU.
Taylor, J. S. (2008). On recognition, caring, and dementia. Medical Anthropology Quarterly, 40, 313-335.