THE LIVED EXPERIENCES AND BURDEN OF CAREGIVERS OF PEOPLE WITH DEMENTIA (MNCD): A QUALITATIVE EXPLORATION AT SAINT PAUL'S HOSPITAL MILLENNIUM MEDICAL COLLEGE, ADDIS ABABA, ETHIOPIA, 2025

Abstract

ABSTRACT Background: Dementia is a progressive neuro-cognitive disorder marked by substantial cognitive decline, interfering with daily activities. Globally, over 55 million people live with dementia, with approximately 60% residing in low- and middle-income countries. There is a scarcity of qualitative research that explored the lived experiences of caregivers in resource-limited settings such as Ethiopia. Understanding caregiver challenges is essential for designing culturally relevant interventions and policies. Objective: To explore and describe the lived experiences of caregivers of dementia (MNCD) patients at Saint Paul’s Hospital Millennium Medical College (SPHMMC), Addis Ababa, Ethiopia, 2025 E.C. Methods: An exploratory phenomenological qualitative design was used among 10 purposively selected informal caregivers of people with dementia attending the psychiatry department at SPHMMC. Data were collected through semi-structured in-depth interviews until data saturation and analyzed using inductive thematic analysis with ATLASTi 7.3 software. Results: Four major themes emerged: (1) physical and daily caregiving burden, (2) emotional, social, and financial burden, (3) knowledge gaps and unmet support needs, and (4) positive outcomes and coping strategies. Caregivers reported high-intensity, multidimensional challenges, yet demonstrated resilience, personal growth, and adaptive coping strategies. Conclusion: Dementia caregiving in Ethiopia is characterized by profound multidimensional burdens compounded by limited formal support and low community awareness. The findings highlight the need for structured context-specific interventions, including facility-based caregiver education on dementia care and behavioral management, integration of psychosocial counseling into routine psychiatric services, community awareness initiatives to reduce stigma, and financial and respite support mechanisms to alleviate prolonged caregiving strain. Keywords: Dementia; MNCD, Caregiver burden; Lived experience; Qualitative study; Ethiopia