Facilitators and Barriers to Engaging Families of Persons with Dementia in Research within Geriatric Clinics in Nigeria: Perspectives from Families

Abstract

Introduction Despite the central role of families in dementia caregiving, limited research has examined what shapes their willingness and ability to participate in dementia research. Objective(s) This study explored the relational, cultural, and structural factors influencing families’ engagement in research within a psychogeriatric clinic in Nigeria. Methods We employed a narrative qualitative approach, recruiting 12 caregivers of people living with dementia from a Nigerian psychogeriatric clinic. Participants engaged in semi-structured interviews at their homes, providing rich reflections on their lived experiences, expectations, and perceptions of participating in dementia-related research. Data were subjected to thematic analysis to capture the nuanced meanings families attach to research participation within their sociocultural contexts. Results Families described several facilitators to research participation, including access to healthcare, opportunities to gain dementia-related knowledge, trust in healthcare professionals, and material or financial support. Conversely, significant barriers included lengthy assessments, emotional exhaustion, limited communication of research findings, and uncertainty about the purpose of research. Therapeutic misconception such as the expectation that participation would directly improve the health of their relative influenced recruitment and retention. Families emphasized the importance of involving them and the person with dementia in every stage of study planning to enhance trust, relevance, ethical responsiveness, and cultural sensitivity. Discussion Aligning research procedures with participant expectations, enhancing transparency and communication, addressing therapeutic misconception and undue inducement, and integrating families into the research process may strengthen recruitment, retention, and the broader social impact of dementia research in African settings.