Care & Caregiving: Outcomes that Matter

Develop and refine approaches to measuring outcomes that matter for persons living with dementia and their care partners.

2029 13.S In Progress DN Relevant 2023 Dementia Care Summit G&Os: 1.1, 1.2, 1.3 Workshop: Clinically Meaningful Outcomes in AD/ADRD Trials Research on Care and Caregiver Support 2024

Support at least 6 projects or activities to develop and refine measures that matter, such as projects that:

  • Consider important aspects of well-being, affect, positive/negative emotions, meaningfulness, sense of purpose, and safety.
  • Seek to understand the potential differences in values, priorities, and measurement considerations for outcomes that matter for persons living with dementia and for their care partners.
  • Develop, test, or incorporate strategies for validating self-reported and/or observer-reported measures for defining clinically meaningful thresholds.
  • Develop core measure sets for outcomes that matter to persons living with dementia and/or their care partners that use standardized methods and are harmonizable across studies (e.g., common data elements).
  • Develop and refine approaches for individual goal setting and assessment of goal attainment that are suitable for use in dementia care and caregiving research, including in pragmatic trials.

Summary of Key Accomplishments

NIA awarded funding to the National Bureau of Economic Research for a program project titled “Understanding and Improving Healthcare Decision-Making and Outcomes for People Living with Alzheimer's Disease (PLWD) and Related Dementias” (2P01AG005842-35A1). This research focuses on improving healthcare delivery, decision-making, and treatment effectiveness for people with Alzheimer’s disease and related dementias (ADRD) by examining how provider, caregiver, and patient choices influence outcomes and disparities across care settings. Research will support the refinement of outcome measures by exploring how decision-making processes and healthcare delivery impact real-world outcomes for PLWD, especially those related to access, equity, and quality of care.

The key accomplishments summary is current as of September 2025.