Two new positive psychosocial measures for persons living with dementia

Abstract 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 fami...

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Main Authors: Sheila L. Molony, Sam Fazio, Kimberly Van Haitsma, Richard Feinn, Joseph Montminy, Maureen Rulison, Ricci Sanchez, Sheryl Zimmerman
Format: Article
Language:English
Published: Wiley 2025-01-01
Series:Alzheimer’s & Dementia: Translational Research & Clinical Interventions
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Online Access:https://doi.org/10.1002/trc2.70024
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author Sheila L. Molony
Sam Fazio
Kimberly Van Haitsma
Richard Feinn
Joseph Montminy
Maureen Rulison
Ricci Sanchez
Sheryl Zimmerman
author_facet Sheila L. Molony
Sam Fazio
Kimberly Van Haitsma
Richard Feinn
Joseph Montminy
Maureen Rulison
Ricci Sanchez
Sheryl Zimmerman
author_sort Sheila L. Molony
collection DOAJ
description Abstract 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.
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spelling doaj-art-e4e2feaaa97347a38bcf5edb241cd8ec2025-08-20T02:48:22ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372025-01-01111n/an/a10.1002/trc2.70024Two new positive psychosocial measures for persons living with dementiaSheila L. Molony0Sam Fazio1Kimberly Van Haitsma2Richard Feinn3Joseph Montminy4Maureen Rulison5Ricci Sanchez6Sheryl Zimmerman7Quinnipiac University Hamden Connecticut USAQuality Care & Psychosocial Research Alzheimer's Association Chicago Illinois USARoss and Carol Nese College of Nursing; Director, Program for Person‐Centered Living Systems of Care Penn State University, Nursing Sciences Building University Park Pennsylvania USAQuinnipiac University Hamden Connecticut USAEarly‐Stage Advisor for Alzheimer's Association; Advocate Living with Young‐Onset Dementia Alzheimer's Association Chicago Illinois USABoard Certified Advocate Caregiver Support and Resources Clearwater Florida USAEarly‐Stage Advisor for Alzheimer's Association, Retired Healthcare Executive/CEO Alzheimer's Association Chicago Illinois USACecil G. Sheps Center for Health Services Research and the School of Social Work The University of North Carolina at Chapel Hill Chapel Hill North Carolina USAAbstract 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.https://doi.org/10.1002/trc2.70024Alzheimer's diseasedementiainstrument developmentperson‐centeredwell‐being
spellingShingle Sheila L. Molony
Sam Fazio
Kimberly Van Haitsma
Richard Feinn
Joseph Montminy
Maureen Rulison
Ricci Sanchez
Sheryl Zimmerman
Two new positive psychosocial measures for persons living with dementia
Alzheimer’s & Dementia: Translational Research & Clinical Interventions
Alzheimer's disease
dementia
instrument development
person‐centered
well‐being
title Two new positive psychosocial measures for persons living with dementia
title_full Two new positive psychosocial measures for persons living with dementia
title_fullStr Two new positive psychosocial measures for persons living with dementia
title_full_unstemmed Two new positive psychosocial measures for persons living with dementia
title_short Two new positive psychosocial measures for persons living with dementia
title_sort two new positive psychosocial measures for persons living with dementia
topic Alzheimer's disease
dementia
instrument development
person‐centered
well‐being
url https://doi.org/10.1002/trc2.70024
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