Quality of Life in People with Dementia with Lewy Bodies: a think‐aloud study informing economic outcome measurement

Abstract Background Little is known about assessing the quality of life in economic evaluation in people with Dementia with Lewy Bodies (DLB). This study aimed to explore perspectives of people living with DLB, their insights, and preferences for assessing their quality of life with the goal of optimizing shared decision‐making and delivering person‐centred value‐based care that aligns with individual priorities and preferences. Method A think‐aloud study, and an associated semi‐structured interview were conducted with people living with dementia, diagnosed, or waiting to receive a formal diagnosis and with the capacity to participate in the research recruited via memory services in Ireland and online support groups. During the interviews, participants were invited to reflect on a ‘good life’ and to ‘think aloud’ while completing four economic quality of life instruments with a perspective that goes beyond health (AD‐5D /QOL‐AD, AQOL‐4D, ICECAP‐O, ICECAP‐SCM). Qualitative data were analyzed using constant comparison. Result At the time of submission, 22 think‐aloud interviews had been conducted with people living with dementia of different diagnoses, including 10 interviews with people living with DLB. Preliminary findings indicate that factors such as personal and social relationships, being respected by others, and independence contribute significantly to the overall quality of life of a person living with DLB and evolve as the condition progresses. Conclusion Assessing quality of life in people with dementia is methodologically challenging. Economic quality of life instruments with a narrow health focus do not capture all aspects of a ‘good life’ that people living with DLB consider important. Implications of these findings warrant a broader economic quality of life instrument co‐designed with people living with DLB and their care partners.