Holistic Evaluation to Advance Research in Dementia (HEARD): Phased Interdisciplinary Infrastructure Development and Pilot Studies

PROJECT SUMMARY/ ABSTRACT There is a lack of measures available for domains of importance to individuals and families living with dementia. 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. Rigorous, multi-site psychosocial intervention trials would benefit from a common portfolio of robust measures sensitive to change that capture modifiable and meaningful 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 dementia. Emphasis will be placed on measures that are clinically meaningful to persons living with dementia as well as measures that capture modifiable elements of living well with

dementia. 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 dementia, 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 the goal of adding to the NIH- PROMIS measure set. The dissemination of these products will enhance the existing research

infrastructure and accelerate progress in psychosocial intervention research.