"...it's wanting to do the right thing, at the right time, for the right reasons". Proxy decision making on behalf of individuals who are living with dementia

Background Dementia affects the individual’s ability to make decisions and to undertake everyday activities. When an individual who is living with dementia (Person) does not have decisional capacity, a carer may need to make the decision. Carer proxy deciders find their role challenging, stressful and they experience uncertainty. Understanding how proxy deciders deliberate may inform the development of support for carers who need to make decisions. Aim To understand the thinking of proxy deciders and to consider how carers who are proxy deciders can be supported. Method A scoping review and two empirical interview studies were undertaken. Thematic analysis, the framework approach and application of Construal Level Theory (CLT) were used to analyse and interpret data. CLT is a theoretical approach which provides a way to explore decider thinking. Findings Deciders used abstract thinking to clarify their goals and to provide a basis for deciding, and concrete thinking to establish boundaries for deciding. The dementia caring situation had an equilibrium which required maintenance to meet the needs of the Person. Maintenance of the equilibrium involved focusing on the present, using concrete thinking. Carer proxy deciding was about addressing disruption to restore a threatened or unstable equilibrium, or to establish a new equilibrium. Central values guided deliberation. In deliberation carers focused on the present, used predominantly abstract principles and abstract goals, and found it difficult to balance benefits and burdens. Carers need support to explore different concrete ways to achieve central values and abstract goals, and to see new opportunities. Conclusion CLT has the potential to assist carer proxy deciders because it is a way of exploring different perspectives. Support might involve investigating whether there is a version of a goal that works for the Person and the carer and considering what would demonstrate that a goal is being achieved.