Background Cognitively impaired patients often present poor oral health status that may be explained by ethical tensions in oral healthcare management. This participatory study explored such tensions among adults with intellectual disabilities and with caregivers. The second objective was to specify, with caregivers, the points that should be developed in a future study among dentists. Materials and Methods Three focus groups involving adults with intellectual disabilities, family caregivers and professional caregivers were organized in France in 2013. Results The thematic content analysis identified discrepancies between experiences and expectations, which were particularly marked for the dentist's competence and attitudes, the dentist's role in decisions, the dental care management and the French socio‐political context. Conclusions These discrepancies could partly explain multiple attempts to find the ‘right’ dentist or the fact that care was abandoned, and could at least contribute to oral health needs being unmet.