Dementia patients are being excluded from the very health-economic calculations that determine which treatments get funded. Current methods for measuring quality of life in dementia rely on proxy reports from carers or clinicians, which miss what patients themselves value and how their priorities shift as the disease progresses. This research will build a longitudinal dataset tracking how self-reported and proxy-reported quality-of-life assessments diverge over time, particularly in Lewy Body Dementia, and will co-design dementia-accessible tools—such as adapted choice tasks and interactive visualisation interfaces—that let patients express their own preferences. If successful, the project will produce the VOICE toolkit, a set of evidence-based recommendations for incorporating patient voices into health economics for dementia and other progressive conditions. That could shift how the NHS and other funders allocate resources, moving from a system that treats symptoms toward one that captures what actually matters to the people living with the condition. The work is applied and methodological: it does not seek a biological cure, but aims to fix the economic and ethical machinery that decides which care is worth paying for.
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Healthcare investments could benefit from a critical voice—the affected person's own. Current health economics and outcome research methodologies are exclusionary for conditions like dementia, where quality-of-life assessment is predominantly proxy-reported, narrowly defined, static. This approach silences persons' voices and ignores their lived experiences, resulting in a costly 'sickcare' system that treats symptoms while failing to capture or improve meaningful person-centered outcomes. This research combines longitudinal and creative approaches, grounded in bioethics, and engaged practice, to advance our understanding of the quality-of-life assessment in dementia and develop beyond the state-of-the-art methodologies to engage with, measure, and value lived experiences in health economics and outcomes research. Key deliverables: 1—Longitudinal dataset examining quality-of-life assessment from mild stages through progression, with new knowledge into the temporal dynamics of self- proxy reporting and Lewy Body Dementia. 2—Novel application of established group decision-making technique in quality-of-life valuation by co-designing dementia-accessible choice tasks with creative solutions and longitudinally examining collective preferences. 3—Exploratory proof-of-concept ecosystem investigating routine quality-of-life self-monitoring capabilities, interactive visualization methods for sharing experiences and adaptive interfaces. 4—VOICE: evidence-based toolkit and recommendations for health economics quality-of-life assessment in dementia, adaptable to other progressive conditions. 5—Capacity and leadership in Brain Health Economics through structured mentorship and global network.
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