Health seeking behaviours and dementia care trajectories in India:a qualitative study

It is estimated that there are 5.29 million people with dementia in India (ARDSI, 2010). Only 10% of persons with dementia ever receive any diagnosis, treatment or care (Martin Prince et al., 2015). A number of factors contribute to this treatment gap, including poor awareness, stigma, and limited availability of services (Alladi and Rajagopalan, 2021). These factors vary significantly across different demographic and geographic regions of the country. As a result, there is a need to understand pathways to dementia care and identify the factors that influence this care-seeking. As part of a wider study examining the costs and consequences of unpaid care in dementia under the Strengthening Responses to Dementia and Developing Countries (STRiDE) project, this paper presents health-seeking behaviours and dementia care trajectories reported by persons with dementia and their families in South and East India. Twenty-four family caregivers of persons with dementia were remotely interviewed in-depth and multiple times via semi-structured interviews (N=55) carried out between March to September 2021. Using Framework Analysis, we explore recognition of initial symptoms, subsequent supports sought and utilization of social care services available. We anticipate post-fieldwork analysis to be completed by February 2022.