RISK COMMUNICATION AND DECISIONS IN DEMENTIA: PROFESSIONAL PRACTICE PERSPECTIVES

Purpose: Communication about risks between professionals, individuals with dementia and family members is fundamental to support informed choice and care decisions in health and social care. This study explores the perspectives of professionals in community dementia services on communicating about risk with clients, families and other professionals.

Method(s): Five focus groups were held across Northern Ireland involving thirty-five health and social care professionals. Discussions explored situations in which professionals communicate about risks; how information is communicated; experience and views on different formats of communication (including verbal, numeric and visual modes); good practice examples; and challenges. A grounded theory approach was used for data analysis.

Result(s):

Professionals routinely communicated about risks to people with dementia, family members and colleagues across wide-ranging situations. Challenges for risk communication in practice included conflicting perspectives of best interests with family members and other professionals; lack of insight of risks; unrealistic expectations of services; and practice within a blame culture. There were good practice examples such as communication that enabled individuals to identify risks and solutions themselves; a culture of support for positive risk taking; and timing of communication. There was cautious communication in case of complainant challenge, and wording was framed in the context of ensuring a working relationship. The word ‘concern’ was often used to discuss risk issues. While participants reported receiving quantitative information, generally they did not typically use numeric expressions in their own communications in practice. Verbal expressions of risk were widely preferred to numeric, with a carefully nuanced range of words used to represent levels of risk. Several participants saw potential in using visual forms of communication to communicate risk issues, including in relation to side effects of medication. Participants generally preferred bar charts to icon arrays as more readily understood. Where icon arrays were favoured, this was where they involved human shapes rather than ovals.

Conclusion(s):

Communication about risks must be viewed in a wider context such as the societal ‘blame culture’ and the role of language in creating a working relationship with the client and family. Greater clarity is required about the translation from numeric to verbal probabilities due to the diverse interpretations. Further research is required on optimal visual communication tools.