Two new positive psychosocial measures for persons living with dementia

INTRODUCTION: Differences in adaptive strategies used by individuals and families living with dementia have the potential to impact day-to-day well-being. The Living Well Inventory for Dementia (LWI-D) is a new measure to capture these strategies and to illuminate new options to support families living with dementia. The Quality of Day Scale (QODS) is a new measure to capture global well-being in persons based on a shorter temporal frame than traditional quality of life measures. This article summarizes the initial evaluation of the LWI-D and the QODS for face validity, content validity, and user acceptability. METHODS: Initial acceptability and feasibility testing were conducted with a sample of 17 community-dwelling individuals with early-stage dementia (Montreal Cognitive Assessment [MoCA] scores of 12–30). After revision and optimization of the two measures, a second pilot test was conducted with a sample of 30 dyads (persons living with dementia and family caregivers) in nursing home, assisted living, and community settings. RESULTS: Data from both pilot studies are reported including item analysis and quantitative and qualitative results. Outcomes related to convergent validity between the LWI-D and the QODS with measures of positive affect-balance, quality of life, and well-being are presented. Within-dyad differences in ratings on both measures are discussed. DISCUSSION: The LWI-D and the QODS are developing measures that warrant further testing and may enhance the ability to (1) identify strengths in living well with dementia, and (2) identify and test new interventions to bolster care and support. Highlights: This article describes the process used to develop and test two new measures for research and clinical practice related to positive psychosocial approaches to dementia. The measures were developed with a team that included persons living with Alzheimer's disease as co-researchers in the process. A novel method of human-centered design was used to cultivate deep empathy, generate options, and conduct small, iterative tests of prototype measures.