The economics of decision-making in dementia care and related life-limiting illness: a narrative review

BACKGROUND: Dementia represents a profound healthcare and economic challenge for the 21st century. A significant proportion of associated costs originate in decision-making between people with dementia, family carers, and health and social care practitioners. Economics is a decision science that may inform such choices, but the research evidence has not been collated and synthesised. We review the decision-making literature to analyse how economic insights can be applied to decision-making in life-limiting illness and identify findings applicable to dementia. METHODS: Our literature search was comprehensive and included EconLit, Medline, Embase, and PsycInfo, as well as a targeted search of relevant economic literature. RESULTS: We identified 9,854 studies, of which 62 were included. We found six key economic concepts: (a) principal-agent problem, (b) uncertainty, (c) asymmetric information, (d) hyperbolic discounting, (e) the empathy gap, and (f) non-linear value of time. These findings are helpful in understanding established patterns in the evidence base, including high end-of-life costs and variable efficacy of advance care planning. DISCUSSION: These findings are used to consider the modifiability of formal, social, and household costs, and identify opportunities for future research. Dynamic communication between all decision-makers (patient, family, clinicians) is essential to overcome the identified barriers and drive improvements in dementia care. Further, we note that by integrating economic insights with lived experience, health sciences researchers get a better understanding of how decisions are made. CONCLUSION: Examining the dynamics that shape individual-level decision-making promotes a better understanding of the drivers of costs in life-limiting illness. Economics should make wider use of this methodological approach to examine decision-making in dementia care.