Abstract
BACKGROUND: Around 10% of people living with dementia (PLWD) will experience a deterioration in their condition that will require urgent ('crisis') community support or an in-patient psychiatric admission. We have previously shown that people at high risk of a crisis event can be identified at the point of diagnosis. How the idea that someone is at increased risk of experiencing a crisis event in their care is best communicated is not known. Here, we describe the analysis of interviews with clinicians and PLWD, to understand their perspective and the co-production of tools designed to support risk communication. AIMS: To explore multistakeholder perspectives (healthcare professionals, carers, PLWD; n = 12) on the communication of risk of future in-patient psychiatric admission or enhanced 'crisis' community care and develop tools to support communication. METHOD: This pilot study used an experience-based, co-design approach. Reflexive thematic analysis was used to analyse transcripts, leading to co-development of draft educational materials. RESULTS: We identified five themes that inform how risk should be communicated. Participants underlined the importance of timing, setting and follow-up appointments. Digital tools were considered essential, but they were not seen as a substitute to face-to-face appointments. Individual preferences varied, highlighting the need for patient-centred communication. The findings led to the co-development of clinician guidelines and educational materials. CONCLUSIONS: Risk communication in dementia is complex and must be personalised to be most effective. Our findings may have relevance for the communication of other areas of risk in dementia beyond risk of care crises.