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9 September 2022

Strengthening responses to dementia (STRiDE): generating and using research to inform policymaking

Adelina Comas-Herrera, London School of Economics and Political Science, United Kingdom
Emily Freeman, London School of Economics and Political Science, United Kingdom
Derek King, London School of Economics and Political Science, United Kingdom
Terry Lum , University of Hong Kong, Hong Kong

Abstract

Presentation 1: Overview of the STRiDE project

Adelina Comas-Herrera, London School of Economics and Political Science

Martin Knapp, London School of Economics and Political Science

The Strengthening Responses to Dementia Project (STRiDE), aimed to build capacity in dementia research to inform policies, including national dementia plans, to improve the way in which 7 middle-income countries (Brazil, India, Indonesia, Jamaica, Kenya, Mexico and South Africa) are responding to growing numbers of people living with dementia. This 4-year project ended in 2022, although work is continuing in all the countries. The project was a collaboration between academics and Non-Governmental Organisations.

This presentation will provide an overview of the STRiDE project, outlining some key findings and lessons, covering research on the dementia care landscape and implications for accessing treatment, care and support, attitudes and knowledge about dementia, a survey to establish prevalence of dementia and impacts of providing care on unpaid carers, as well as engagement with policymakers.

Presentation 2: Costing unpaid dementia care in India

Emily Freeman, London School of Economics and Political Science

Jayeeta Rajagopalan, London School of Economics and Political Science
Saadiya Hurzuk, ARDSI
Priya Treesa Thomas, NIMHANS
Meera Pattabiraman, ARDSI
Narendhar R, ARDSI
Suvarna Alladi, NIMHANS

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.

Presentation 3: Use of dementia care services in Indonesia: an in initial exploration

Derek King, London School of Economics and Political Science

Adelina Comas-Herrera, London School of Economics and Political Science
Tara P Sani, Alzheimer’s Indonesia
Yuda Turana, Atma Jaya University
Fasiha Irfani, Atma Jaya University
Imelda Theresia, Alzheimer’s Indonesia

As part of the STRiDE project, we conducted a survey to establish the prevalence of dementia in two regions in Indonesia. As part of the survey, we also collected survey on personal characteristics and situation, as well as use of care and other services, in order to be able to estimate the costs of dementia care in Indonesia and make projections of the resources required to improve access to dementia care over the next 15 years.

In this presentation we will present initial analysis of the use of care by people with dementia only, people who need help with activities of daily living (ADL) and people with both dementia and need for help with ADLs.

Presentation 4: A STRiDE Network to continue international research collaborations to strengthen responses to dementia

Adelina Comas-Herrera, London School of Economics and Political Science

Gloria Wong, University of Hong Kong

This presentation will introduce the STRiDE network which is being created to continue supporting collaboration between researchers, Non-Governmental Organisations and policymakers towards strengthening responses to dementia. We will outline initial ideas about the network and present examples from three research projects linked to STRiDE in England, Hong Kong and New Zealand.

Presentation 5: How to improve dementia care in Hong Kong

Terry Lum, University of Hong Kong 


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