The Complex Dynamics of Caregiving for ADRD Patients in Uganda: Selection Factors, Challenges, and Benefits

Abstract Background: Family caregivers provide most of the care for people living with Alzheimer’s disease and related dementias (ADRD), often without preparation or formal support. While caregiver burden is well documented, little is known about how caregivers are selected within families, the challenges they face, and the personal meaning they derive from caregiving in Uganda. This study explored caregiver selection, caregiving challenges, and perceived benefits in a low‑resource setting. Methods: This qualitative study was conducted in Wakiso District, Uganda, using in-depth interviews with 14 family caregivers purposively selected from a previous caregiver cohort. Interviews were conducted in Luganda, transcribed verbatim, translated into English, and analysed using thematic analysis. The Mental Models Framework guided the interpretation of caregivers' experiences. Results: Three interrelated themes emerged: relational foundations of caregiving, multidimensional struggles of caregiving, and benefits of caregiving. Caregiver selection was shaped by longstanding family relationships, emotional closeness, a sense of responsibility, and, in some cases, the preferences of the person living with ADRD. Caregivers described overlapping emotional, physical, financial, and social challenges that frequently required substantial personal sacrifices, including leaving employment or education to provide care. At the same time, many reported positive experiences, including increased knowledge of dementia, greater empathy, stronger relationships with healthcare providers and community members, and a sense of fulfilment through giving back to relatives who had previously cared for them. Conclusion: Caregiving for people living with ADRD in Uganda is both demanding and deeply rooted in family relationships and cultural expectations. While caregivers face considerable pressures, they also find meaning and personal growth through caregiving. These findings underscore the urgent need for culturally tailored interventions that combine education, psychosocial support, practical skills training, and community‑based resources to strengthen caregiver wellbeing and improve dementia care in sub‑Saharan Africa.