Understanding the Experiences, Challenges, and Needs of Dementia Caregivers in the Indian Subcontinent

This is the authors' abstract. We don't add key points for this paper.

In the realm of dementia care-giving within India, the caregivers often resemble hidden patients, bearing the weight of an often-overlooked role. However, there remains a dearth of comprehensive data regarding the emotional and physical challenges caregivers face in the Indian subcontinent. We present a qualitative study that delves into the realities of being a dementia caregiver in India, investigating caregivers’ experiences and examining the impact of several challenges on their daily lives. Through in-depth interviews, we engaged with four primary caregivers of individuals with dementia, delving into how care-giving shapes their social interactions, mental equilibrium, and emotional states. The findings highlight the importance of having an emotional outlet, a support system, and accessible resources for enhancing caregivers’ quality of life. Drawing from these insights, we propose a set of design implications that can guide future endeavors focused on enhancing the overall well-being of dementia caregivers in India. This research effectively bridges a substantial knowledge gap, extending support and understanding to this vital cohort of individuals who stand at the forefront of dementia care.