Freeman, Emily 
ORCID: 0000-0001-9396-1350, Rajagopalan, Jayeeta, Hurzuk, Saadiya, Thomas, Priya Treesa, Pattabiraman, Meera, Ramasamy, Narendhar and Alladi, Suvarna
(2022)
Understanding the economics of dementia at the family level in India.
In: 35th Global Conference of Alzheimer’s Disease International: New horizons in dementia: building on hope, 2022-06-09 - 2022-06-11, London + Online, United Kingdom, GBR.
Abstract
The dementia care system in India relies on families of people living with advanced dementias (PLWD) to support their care – either providing it themselves, possibly necessitating foregoing opportunities for paid work, or paying for it from the unorganised care labour sector. The sustainability and quality of India’s dementia care system therefore depends on the extent to which these economic costs are bearable to families. While there is some evidence about the negative consequences of meeting these costs (Narayan et al. 2015), there has been little engagement with what ‘families’ means in this context. This paper critically engages with the implied expectation that both wealth and expenditure – that is, dementia care costs and the resources to meet them - are shared among adult members of Indian families to explore: 1.families’ decision-making around who can and cannot be appropriately called upon to provide different types of care; 2.the extent to which the families of PLWD experience caregiving as individuals or as family units; 3.the methodological implications of this for understanding the economic impact of providing dementia care and the salience of this for positioning dementia as a public health priority. The paper is informed by ongoing analysis of a series of in-depth, qualitative interviews (N=55) with 24 ostensibly low and middle-income family members of people living with moderate or severe dementias in East and South India, in which reports of income or wealth appear to be contradictory, ambiguous, and associated with family members’ understandings of dementia and dementia care.
| Item Type: | Conference or Workshop Item (Paper) |
|---|---|
| Official URL: | https://www.alzint.org/what-we-do/adi-conference/a... |
| Additional Information: | © 2022 The Authors |
| Divisions: | Care Policy and Evaluation Centre |
| Subjects: | R Medicine > RA Public aspects of medicine H Social Sciences > HV Social pathology. Social and public welfare. Criminology H Social Sciences > HQ The family. Marriage. Woman |
| Date Deposited: | 13 May 2024 08:00 |
| Last Modified: | 14 Sep 2024 04:04 |
| URI: | http://eprints.lse.ac.uk/id/eprint/123021 |
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