Background: Communication is affected by dementia, even in the early stages. Studies directly observing how patients, companions and healthcare professionals communicate have not yet been reviewed.
Methods: Eight databases were searched, and hand searches of relevant journals and grey literature were performed up to August 2014. Two authors reviewed abstracts independently and collectively reviewed for agreement of inclusion. Findings were narratively synthesized.
Results: 23 studies were identified observing: diagnostic, follow up, day center, primary care and research consent interactions. Companions were present in 14 studies. Three themes emerged: emotional impact of diagnosis, level of patient involvement and participant strategies to save face and cope with cognitive impairment. Eight studies observed diagnostic disclosure describing emotional reactions, with professionals using mitigating language and rarely checking patient understanding. Studies reported varying patient involvement, showing marginalization in primary care but not in assessments or diagnostic feedback. Patients used humor and metaphor to compensate for difficulties retrieving information and responding appropriately, suggesting preserved awareness of the pragmatics of interaction. Companion roles fluctuated between patient advocate and professional informant. Professionals encountered challenges adapting to heterogeneous patient groups with varying capabilities and needs.
Conclusions: Patient-companion-professional communication in dementia care raises various ethical questions: how to strike a balance between different communicative needs of patients and companions; clarity versus sensitivity in delivery of the diagnosis; and whether to minimize or expose interactional difficulties and misunderstanding to enrich patient understanding and involvement. Healthcare professionals need guidance in delivering a diagnosis and strategies to optimize patient and companion participation.
Keywords: Alzheimer’s disease; cognitive impairment; communication; dementia; diagnosis; face work; interaction; patient involvement.