The experience of burden in India

Abstract

Thirty caregivers of people living with dementia were investigated to examine the caregivers' experience of burden. The Clinical Dementia Rating Scale (CDRS), Burden Interviews and open-ended questions were administered on patients attending inpatient and outpatient services at the National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore (India). Findings indicate that only 30 percent of the cases fell into the high burden group. No statistically significant results were observed between caregiver relationship and burden scores. Burden experienced in extended families was less compared to the other types of families. To conclude, the need to create awareness about the illness among different sections of the general population and interventions suited to the Indian caregivers are discussed.

Assessment of the level of care-burden in informal caregivers of patients with dementia

“…The findings of this study show that 26% of carers were experiencing a moderate to severe level of care-burden. This is similar to findings reported from India, where care-burden has been reported to be 30% (8). It could be queried whether the prevalence of subjective care-burden would be lower in Eastern cultures, compared to the West -it may be argued that looking after ageing relatives might be appraised as less burdensome given the collectivistic nature of these societies.…”

Contractarianism and the Ethic of Care in Indian Fiction

“…Secondly, this balancing act has to be performed on a day-to-day basis because caregiving in India is still 'entirely family based', rather than provided in an institutional setting. 38 Together, these two conditions have the potential for making the daughter's task of caregiving in Indian families a great deal more onerous compared to developed Western countries, where the prevalence of institutional care tends to be much greater and where caregiving daughters, while still wrestling with the intense demands of their roles, can nonetheless put some level of physical distance between the needs of their mothers on the one hand and their husband and children on the other.…”

Lived Experience of Dementia in the New Zealand Indian Community: A Qualitative Study with Family Care Givers and People Living with Dementia

“…Caregivers of parents with dementia accepted their role as part of their filial duty, a common concept in the Indian and South Asian society [23]. In Asian cultures families are expected to provide care for the person with dementia, either out of affection or out of duty, and to meet cultural needs that are sometimes beyond their capabilities of standard care services [4,24,25]. The concept of extended families is often seen as a way of keeping parents involved in the lives of their children and grandchildren, hence allowing a symbiotic relationship that often benefits the whole family [24].…”

“…In Asian cultures families are expected to provide care for the person with dementia, either out of affection or out of duty, and to meet cultural needs that are sometimes beyond their capabilities of standard care services [4,24,25]. The concept of extended families is often seen as a way of keeping parents involved in the lives of their children and grandchildren, hence allowing a symbiotic relationship that often benefits the whole family [24]. On the other hand, such living arrangements may be a source of stress, particularly to the female caregivers in a family where one member has dementia and is no longer able to assist with childcare.…”