How do people with dementia and family carers value dementia-specific quality of life states? An explorative “Think Aloud” study

Abstract

Objective: To investigate the decision-making processes applied by people with dementia and family carers participating in using health economic approaches to value dementia-specific quality of life states. Methods: People with dementia (n = 13) and family carers (n = 14) participated in valuing quality of life states using two health economic approaches: Discrete Choice Experiment (DCE) and Best Worst Scaling (BWS). Participants were encouraged to explain their reasoning using a “Think Aloud” approach. Results: People with dementia and family carers adopted a range of decision-making strategies including “anchoring” the presented states against current quality of life, or simplifying the decision-making by focusing on the sub-set of attributes deemed most important. Overall, there was strong evidence of task engagement for BWS and DCE. Conclusions: Health economic valuation approaches can be successfully applied with people with dementia and family carers. These data can inform the assessment of benefits from their perspectives for incorporation within economic evaluation.