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.

Recent drives to facilitate earlier identification of dementia have led to increased memory clinic referrals and diagnoses. This study explored the perspectives of memory clinic doctors on making and delivering diagnoses. Four focus groups were conducted with 13 psychiatrists and two geriatricians in the UK. Transcripts were coded line by line using NVIVO. Thematic analysis identified 39 categories, 18 sub-themes and eight overarching themes. Inter-rater reliability on 31% of the data was 0.89. Increased public awareness of dementia was viewed positively in facilitating access to diagnosis and treatment. Doctors viewed diagnosis as a process and expressed concerns about limited pre-diagnostic counselling and post-diagnostic support. In diagnostic delivery doctors sought to develop a narrative drawing on the patient's report of symptoms and adjust explanations to patient preferences and awareness. However, tailoring the delivery to the individual patient was challenging when meeting for the first time. These consultations often involved three participants (doctor, patient and relative), who were felt to have differing needs and expectations. Doctors emphasized that delicacy was required in deciding in what could be discussed in front of both parties, however also stressed the importance of explicitly naming 'dementia'. Efforts were made to balance honesty and hope when discussing prognosis and medication. The work was sometimes emotionally distressing, with limited supervision. Existing communication training was felt to be inadequate for consultations involving triads or people with cognitive impairment. Delivering a dementia diagnosis is a nuanced and challenging task. Negotiating honest descriptions of a life-limiting condition whilst instilling hope is further complicated when cognitive impairment affects comprehension. Misunderstandings at the time of feedback may limit patient opportunities for informed future planning afforded by early diagnosis. Doctors in memory clinics would benefit from evidence based training and supervision to prepare them for these emotionally challenging and complex consultations.

Shared understanding can be successfully targeted in training and improves relationships in treating psychosis.

Doctors are naming dementia to patients. Direct approaches reflect attempts to ensure clear diagnosis. Downplaying and avoiding prognosis demonstrates concerns about preserving hope but may compromise understanding about and planning for the future. Declaration of interest None.

There has been surprisingly little research capturing people’s everyday lives in the early years following a diagnosis of dementia. This project was co-produced by three people with dementia and two university researchers. The co-researchers with dementia formulated the aims of this project as: (1) to explore post-diagnosis life with dementia and (2) to use data collection methods as a form of peer support and confidence building for the participants. The intent was to provide the opportunity to learn new skills and support participants to share their experiences without putting them on the spot. Five participants with recent diagnoses received a photography lesson and cameras to take photographs of their everyday lives. This was followed with a focus group in which the photographs were discussed. The participants used their photographs to explain: (1) the differences between their past and present with dementia, (2) how dementia affected their thought processes, (3) pets and grandchildren as facilitators of reciprocal joy and support, (4) the emotional effects of living with a dementia diagnosis, and (5) the solace and stability of nature in a changing world. The participants’ creative use of photography supported them to express the complex emotions felt after a diagnosis of dementia and they reported the benefit of doing this in an environment with peers going through the same experiences. The role of the co-researchers with dementia was the key to the success of this project, drawing on their own experiences to design the project and support the participants. Future research should draw on the experiences of people with dementia to design research projects and care interventions.