Part of the wider Strengthening responses to dementia in developing countries (STRiDE) project, this sub-study aims to explore the financial, social and health costs and consequences of providing unpaid care for people with dementia in India, Jamaica, and Mexico.  We use highly inductive qualitative interviewing to understand the complexities in caregiving experienced by people who care, or have cared, in each setting.  In March 2020 we suspended in-person fieldwork in light of the global COVID-19 pandemic and sought to adapt our methodology.

The pandemic presents a period of potential crisis for people providing unpaid long term care.  It is likely that some people caring for those with dementia, as well as those they care for, will contract the virus.  Moreover, it is likely that a period of complete or reduced face-to-face contact within social networks, reduced availability of services and restrictions on economic activities will affect caregivers’ experiences of providing care.  Should either the pandemic, or national and local responses to the pandemic, significantly affect participants’ daily lives, this period is likely to highlight and possibly exacerbate inequities in whether and how providing unpaid care to a family member with dementia presents a burden to caregivers.  Data about COVID-19 experiences are likely to help us better understand the broader costs and consequences of providing unpaid dementia care, as well as the impact of response measures on caregivers during the pandemic and the legacy of additional care and support needs that these responses may generate and that will need to be addressed when in-person services resume.

To this end, discussion of COVID-19 experiences will be a key part of a full programme of remote in depth interviews with caregivers in India, commencing February 2021.  In Mexico, a series of short ‘check in’ calls with existing participants over the second half of 2020 is being complemented by extended discussion of COVID-19 as part of remote in depth interviews with existing and new participants that began in December 2020.  In Jamaica, a longer series of repeated short ‘check in’ calls with caregivers interviewed pre-March 2020 are helping us to generate observational data on COVID-19 experiences and shape plans for further generation of remote in depth interview data later in 2021.

Outputs are expected beginning December 2021.

See the pdf file below for a presentation outlining research questions and methods: The costs and consequences of providing unpaid
care to people living with dementia in middle-income
countries