People with Dementia in Sub-Saharan Africa: From Support to Abuse by Caregivers: Results of EPIDEMCA-FU Program in Congo

Abstract

Background/Aims: Dementia is an emerging public health problem in sub-Saharan Africa (SSA). In SSA, the stigma suffered by people with dementia (PWD) can be strongly linked to pejorative social representations, interfering in social relationships with informal caregivers. The objective of the study was to analyze the consequences of social representations of PWD in social interactions with informal caregivers. Methods: A qualitative study was conducted in Republic of Congo among 93 interviewees. Nondirectional interviews were conducted in local languages and complemented by participating observations. The collected data were transcribed literally, synthesized, and then coded to allow extraction and organization of text segments. Results: Informal caregivers, daughters-in-laws, were considered as abusers and granddaughters as benevolent. The leaders of syncretic churches and traditional healers were the first therapeutic itineraries of PWD, due to pejorative social representations of disease. Of these, some PWD have appeared at front of a customary jurisdiction for accusations of witchcraft. Dementia, perceived as a mysterious disease by informal caregivers, wasn’t medicalized by leaders of syncretic churches, traditional healers, nurses, or general practitioners. Conclusion: Stigma, generated by social representations, can change the patient’s behavior and the one of informal caregivers, leading to time delay in the search for appropriate help.