Attitudes to long-term care in India: a secondary mixed-methods analysis.

BACKGROUND: India is the world's most populous country, and overseas Indians the world's largest diaspora. Many of the more than 1·4 million UK-based Indians will be providing care at a distance for parents living in India. Globalisation has contributed to a shift in India from traditional joint family systems to more nuclear structures. We investigated how commonly Indian parents consider and use long-term care facilities and attitudes to their use. METHODS: We did a secondary mixed-methods statistical analysis of the LASI (Longitudinal Ageing Study in India), a national, cross-sectional household survey administered in 2017-18 to 73 396 randomly selected adults aged 45 years and older in all Indian states and Union Territories (42 261 [58%] women, 31 135 [42%] men). We report the proportion and sociodemographic predictors of respondents' parent(s) living in a care home. We also did a secondary thematic analysis of the qualitative interviews from the Moving Pictures India Study, exploring attitudes to long-term care in 2022. These interviews included 19 carers (nine [47%] women; age range 31-79 years) for people with dementia and 25 professionals (19 [76%] women; age range 24-56 years) purposively selected for diversity from networks of the team based at a Bangalore hospital, India. FINDINGS: 24 LASI participants reported that their parent was living in a long-term care facility (father [n=8], mother [n=15], both parents [n=1]). Although rare overall, use and consideration of use of long-term care were more frequently reported in urban areas (n=14, 58%), by people in middle-income quintiles (n=17, 71%) with higher levels of education (n=7, 29%), who rated their health as good or very good (n=15, 63%). The themes identified in qualitative interviews were the use of long-term care facilities as a last resort, social expectations, and limited availability of long-term care facilities. INTERPRETATION: Although interviews were only conducted in Bangalore and respondents could misrepresent living arrangements due to ongoing societal stigma, the data show that very few people reside in old age homes across India, with strong preference towards intergenerational and community care. With the UK home to a growing diaspora of nuclear Indian families, our findings illustrate the contexts in which they provide care at a distance, navigating cross-cultural attitudes and social norms around long-term care. FUNDING: Alzheimer's Association US.

Attitudes to long-term care in India: A secondary, mixed methods analysis.

OBJECTIVES: In India, globalisation is purported to have contributed to shifting family structures and changing attitudes to long-term care (LTC) facility use. We investigated the attitudes to and usage frequency of LTC in India. METHODS: We conducted secondary analyses of: (a) The Moving Pictures India Project qualitative interviews with 19 carers for people with dementia and 25 professionals, collected in 2022, exploring attitudes to LTC; and (b) The Longitudinal Ageing Study in India (LASI) 2017-2018, cross-sectional survey of a randomised probability sample of Indian adults aged 45+ living in private households. RESULTS: We identified three themes from qualitative data: (1) LTC as a last resort, describes how LTC could be acceptable if care at home was "impossible" due to the person's medical condition or unavailability of the family carer, for example, if family members lived overseas or interstate. (2) Social expectations of care at home from family members and paid carers and; (3) Limited availability of LTC facilities in India, especially in rural localities, and the financial barriers to their use. Of 73,396 LASI participants, 40 were considering moving to LTC; 18,281 had a parent alive, of whom 9 reported that their father, and 16 that their mother, lived in LTC. LTC use was rare. While a third of participants with a living parent lived in urban areas, 14/24 of those with a parent in LTC lived in an urban area, supporting our qualitative findings that LTC is mainly accessed in urban areas. CONCLUSIONS: Preference for intergenerational community care combined with limited availability and societal stigma contribute to low rates of LTC use among Indian families. Future social policies should consider how to plan for greater equity in strengthening care at home and in the community, and bolstering respite and LTC services as a last resort.

Relational Solidarity and Conflicting Ethics in Dementia Care in Urban India.

OBJECTIVES: Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. METHODS: Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March and July 2022. Data were translated into English and thematically analyzed. RESULTS: Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being "like a kid" and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. DISCUSSION: There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.

What is associated with caregiver burden for adults with bipolar affective disorder: Illness severity or financial well being?

Background: Persons with bipolar affective disorder (BPAD) need long-term care and support. As most of the expenses for this are met personally by the caregivers, it will have financial implications for them. However, we do not know how much financial well-being is associated with the caregivers' burden as compared to the illness severity. Aim: This study aimed to examine the association between financial well-being and illness severity with the caregivers' burden in the context of BPAD. Materials and Methods: This study adopted a cross-sectional descriptive design. The first 50 consenting caregivers of persons with an International Classification of Diseases (ICD)-10 diagnosis of BPAD, who visited the National Institute of Mental Health and Neurosciences (NIMHANS) within 2019-2021, were included in the study. The patients were assessed on the Clinical Global Impression (CGI) and the Global Assessment of Functioning (GAF) for the severity of the symptoms and the current level of functioning, respectively. Caregivers were assessed on the Personal Finance Well-Being Scale. Results: In this study, the majority of caregivers were males (62%), with a median, monthly household income of Rs. 24,000, and expenditure of Rs. 12,000. The median cost of medicine was Rs. 1000 per month. The majority (64%) of patients did not have any health insurance. A total of 28 (56%) caregivers reported the cost of damage due to illness behavior. It was found that the severity of illness and current level of functioning had a significant negative correlation with caregivers' burden. The financial well-being as reflected through income and health expenditure did not have a significant correlation with the caregivers' burden. Conclusions: Caregivers of persons with BPAD meet the treatment expenditure out of their pocket. Though they have the financial burden, it is the illness severity and functioning capacities that are associated with caregivers' burden. These findings have implications for mental health care in persons with BPAD.