FACILITATING CONSUMER-DIRECTED DECISION MAKING IN LONG-TERM CARE: RESULTS FROM A CITIZENS’ JURY

People with dementia are increasingly vocal about their right to make decisions regarding their own care. Enabling informed choice is a challenge in long term care where many residents are in the later stages of dementia. Care facilities are bound by both financial and legal responsibilities and task-centred care can be rooted in staff culture. A Citizen’s Jury is an emerging method of community engagement that solicits the judgement of lay-people on complex policy issues. The aim of this Citizen’s Jury was to guide implementation of consumer directed care into long term care practice. A group of 14 ‘jurors’, unrelated members of the public, were upskilled in the concepts of residential care, cognitive impairment and informed decision making by a panel of experts. They were charged with making a judgement about (1) what day-to-day matters should be left to consumer choice; (2) who should be responsible for eliciting preferences, and; (3) what regulations should be in place to ensure choice is honoured. Jurors were in favour of informed decision making in aged care but could acknowledge the barriers inherent to the current system. Jurors identified many aspects of day-to-day life that could and should be amended to consider resident preferences. They agreed that systems are needed to provide transparency and monitoring of consumer-directed care, and that existing bodies were well placed to provide these. Overall jurors believed that the onus of facilitating resident decision making rested with care facilities and that amendments to improve care flexibility were overdue.