Molony, Sheila L
There is a lack of measures available for domains of importance to individuals and families
living with Alzheimer’s Disease (AD) and related dementias. Available measures that do have clinical importance may include abstract constructs and/or complex response formats (e.g. 7-point Likert-type or numerical scales) that are not optimal for persons with dementia. Interdisciplinary researchers are engaging in innovative, person-centered interventions grounded in therapeutic optimism but are constrained by instruments that primarily quantify negative behaviors, deficit, and decline, and/or by measuring broad constructs such as global quality of life. The NIH-PROMIS measures demonstrate the value of standardized, common datasets but they do not currently incorporate patient preferences and may not encapsulate the full range of positive outcomes. Persons living with AD would benefit from rigorous, multi-site psychosocial intervention trials using a common portfolio of robust measures sensitive to change and measures that capture modifiable aspects of living well with dementia over time. This project will develop the infrastructure for development, standardization and validation of new outcome measures and methods for psychosocial interventions in AD. Emphasis will be placed on measures that are clinically meaningful to persons living with AD as well as measures that capture modifiable elements of living with AD and related dementias. Measures that optimize longitudinal evaluation of psychosocial intervention for persons with co-occurring cognitive and sensory challenges will be prioritized. In the R21 phase, an interdisciplinary steering council comprised of persons living with AD, researchers and biostatisticians will convene focused expert panels and collaborate with an advisory board of researchers and clinicians. Using the principles of human-centered design, the council will identify priority outcome measures and create standards for design and testing of novel measures, methods, and technologies. In the R33 phase, prioritized measures and methods will be pilot tested. These will include self-report, carer-informed and observational measures. Products of this work will include: 1) Research guidelines for the development and testing of new measures for psychosocial intervention research and 2) Promising new measures, methods and technologies available for larger scale testing with goal of adding to the NIHPROMIS measure set. The dissemination of these products will enhance the existing research infrastructure and accelerate progress in psychosocial intervention research.