Perception and Communication of Risk in Decision Making by Persons with Dementia

Communication of risks must involve people with dementia meaningfully to ensure informed and inclusive decision-making processes. This qualitative study explored concepts of risk from the perspective of persons with dementia and their experiences of communicating risk with family members and professionals. Data was analysed using grounded theory. Seventeen people in Northern Ireland with mild-moderate dementia who had recently made a decision about their daily life or care involving consideration of risks were interviewed between November 2015 and November 2016. A wide range of actual or feared risks were identified relating to: daily activities; hobbies and socialising; mental health and medicines; and risks to and from others. ‘Risk’ often held emotional rather than probability connotations. Constructive communications to address issues were presented. Problem-solving models of both active and passive decision-making about risks were evident. Effective risk communication in informed decision-making processes about health and social care is discussed.