Sheila L. Molony, Sam Fazio, Kimberly Van Haitsma, Richard Feinn, Joseph Montminy, Maureen Rulison, Ricci Sanchez, Sheryl Zimmerman
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引用次数: 0
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.
期刊介绍:
Alzheimer''s & Dementia: Translational Research & Clinical Interventions (TRCI) is a peer-reviewed, open access,journal from the Alzheimer''s Association®. The journal seeks to bridge the full scope of explorations between basic research on drug discovery and clinical studies, validating putative therapies for aging-related chronic brain conditions that affect cognition, motor functions, and other behavioral or clinical symptoms associated with all forms dementia and Alzheimer''s disease. The journal will publish findings from diverse domains of research and disciplines to accelerate the conversion of abstract facts into practical knowledge: specifically, to translate what is learned at the bench into bedside applications. The journal seeks to publish articles that go beyond a singular emphasis on either basic drug discovery research or clinical research. Rather, an important theme of articles will be the linkages between and among the various discrete steps in the complex continuum of therapy development. For rapid communication among a multidisciplinary research audience involving the range of therapeutic interventions, TRCI will consider only original contributions that include feature length research articles, systematic reviews, meta-analyses, brief reports, narrative reviews, commentaries, letters, perspectives, and research news that would advance wide range of interventions to ameliorate symptoms or alter the progression of chronic neurocognitive disorders such as dementia and Alzheimer''s disease. The journal will publish on topics related to medicine, geriatrics, neuroscience, neurophysiology, neurology, psychiatry, clinical psychology, bioinformatics, pharmaco-genetics, regulatory issues, health economics, pharmacoeconomics, and public health policy as these apply to preclinical and clinical research on therapeutics.