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

> **NIH NIH R33** · UNIV OF NORTH CAROLINA CHAPEL HILL · 2024 · $320,383

## Abstract

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.

## Key facts

- **NIH application ID:** 10913628
- **Project number:** 5R33AG070481-03
- **Recipient organization:** UNIV OF NORTH CAROLINA CHAPEL HILL
- **Principal Investigator:** Sheryl Zimmerman
- **Activity code:** R33 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $320,383
- **Award type:** 5
- **Project period:** 2021-06-01 → 2026-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10913628

## Citation

> US National Institutes of Health, RePORTER application 10913628, Holistic Evaluation to Advance Research in Dementia (HEARD): Phased Interdisciplinary Infrastructure Development and Pilot Studies (5R33AG070481-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10913628. Licensed CC0.

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