Freeman, Emily 
ORCID: 0000-0001-9396-1350, Rajagopalan, Jayeeta ORCID: 0000-0002-1442-9786, Hurzuk, Saadiya, Thomas, Priya Treesa, Pattabiraman, Meera, Ramasamy, Narendhar and Alladi, Suvarna
(2022)
Costing unpaid dementia care in India.
In: 6th International Conference on Evidence-based Policy in Long-term Care, 2022-09-07 - 2022-09-10, London School of Economics and Political Science, London, United Kingdom, GBR.
Abstract
Money talks, especially to those tasked with building, maintaining and funding systems for long term care. Demonstrating that unpaid care is not ‘no cost’ care is therefore a key goal for researchers and care advocates and alike. But answers developed to the key question of how unpaid care should be economically valued are not yet sufficient. There is much we don’t know, especially outside the high-income countries that have been the primary focus of research. Along with issues of which direct and indirect costs should be measured (Mattap 2022), are the knottier issues about how care itself and its costs should be conceptualised. In this paper we reflect on the cost of unpaid care for those supporting family members living with moderate or severe dementias in East and South India. Here, the care system relies on families to pay for access to private or subsidised public specialist healthcare, and to provide needed social care, either directly, or indirectly through securing it from the unorganised care labour sector. We present iterative, inductive analysis of a series of in-depth, qualitative interviews (N=56) with 24 low and middle-income family members carried out in 2021. • We outline direct costs that are catastrophic for some families and manageable to others, as well as indirect costs that are not routinely considered in costing studies. • We consider the extent and nature of indirect costs and consider how the distribution of different kinds of care labour (‘hands-on’ care, financial support) within families shapes how indirect costs are recognised, conceptualised, and reported by family members themselves – the would-be participants of any large-scale costing studies. Our findings subsequently make three important contributions. First, they join a growing body of research in highlighting the (re)production of long-term care inequalities. Second, they highlight costs and care inputs that are not often considered in valuations of unpaid care. Finally, they call for greater critical engagement with ostensibly unambiguous components in the unpaid care costing debate: ‘the family’ in family care, the enumeration of caregivers’ hours, and the parity assumed in the cost and value between different caregivers’ hours.
| Item Type: | Conference or Workshop Item (Other) |
|---|---|
| Official URL: | https://www.ilpnetwork.org/event/ilpn-internationa... |
| 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 |
| Date Deposited: | 13 May 2024 07:36 |
| Last Modified: | 01 Nov 2024 04:08 |
| URI: | http://eprints.lse.ac.uk/id/eprint/123020 |
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