Training needs of informal caregivers of persons with dementia in rural southwestern Uganda: A qualitative formative study

Abstract

Dementia is a global public health concern with increasing prevalence, especially in low- and middle-income countries (LMICs) where care is primarily provided by informal family caregivers. This study identified the specific training needs of informal caregivers of persons with dementia in rural southwestern Uganda to inform the development of contextually appropriate caregiver training interventions. We conducted 20 in-depth interviews with 17 caregivers and 3 key informants affiliated with Reach One Touch One Ministries (ROTOM), a community- based organization supporting older persons in Rukiga District, Uganda. Interviews were audio-recorded, transcribed verbatim, and analyzed thematically using an inductive approach. Caregivers demonstrated limited knowledge of dementia, often attributing it to normal aging, spiritual causes, or stress. They faced substantial physical, emotional, and financial burdens, and relied on faith, social support, and adaptive caregiving strategies. All expressed willingness to attend group-based, in-person training focused on practical skills, including communication, managing dementia-related behaviors, personal hygiene, nutrition, and medication administration. Key informants highlighted the importance of community awareness to address misconceptions. Informal caregivers in rural Uganda experience high caregiving burden and unmet training needs. The identified training priorities closely align with World Health Organization (WHO) Support domains, supporting adaptation of the program for rural Ugandan caregivers.