Uncovering the Unspoken: Exploring the Emotional Landscape of Caregivers of Alzheimer’s Patients

Abstract

The aim of this qualitative study was to gain deeper insight into the emotional experiences of informal caregivers of Alzheimer’s disease who are in their fourth stage and beyond. Existing studies have shown that caregivers often experience negative emotions such as guilt, frustration, sadness, and isolation, with a particular focus on female caregivers in India. However, the role of these emotions on caregivers’ well-being and cognition, as well as the role of gender in India, remains unclear. To address this gap, the study employed face-to-face and telephone interviews with informal caregivers of people with Alzheimer’s. The researcher adopted a purposive sampling strategy, recruiting eight female caregivers and three male caregivers. The interviews, which lasted between 30 minutes and an hour, were recorded, transcribed, and analyzed using thematic analysis. The study’s significant findings revolved around three main themes: “the complex terrain of caregiving,” including the initial denial stage, the emotional struggles caregivers face, and the impact of caregiving on their social lives. The second theme was the “transformative journey of caregiving,” which talks about how the caregivers found a balance between themselves and the caregiving roles and lastly, the “gendered nature of caregiving,” which explored how gender roles and societal norms affect the caregiving experience. This research emphasizes the need to comprehend the multifaceted aspects of caregiving and the importance of specialized support systems to enhance caregivers’ well-being. The study’s findings provide valuable insights into caregiving dynamics, which can facilitate improving the quality of care for individuals with Alzheimer’s in India.