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Launch programs on impact of diagnosis on individuals and families, to include individual response and social impacts.
2030 PAR-15-348: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01) PAR-18-027: Research on Informal and Formal Caregiving for Alzheimer's Disease (R01 Clinical Trial Optional) (Reissue of PAR-15-348) RFA-MH-22-135: Social Disconnection and Suicide Risk in Late Life (R01) RFA-MH-22-136: Social Disconnection and Suicide Risk in Late Life (R21) RFA-AG-22-020: Triadic Interactions in Clinical Encounters Involving People with Alzheimer's Disease and Alzheimer's Disease-Related Dementias (AD/ADRD), Clinicians, and Care Partners (R01) 11.G In Progress DN 2017 Dementia Care Summit: 6.2 and 6.4 2020 Dementia Care Summit: 1.3, 1.4, 3.5, 4.8 Relevant 2023 Dementia Care Summit G&Os: 2.1, 2.2, 2.3 NASEM Behavioral and Social Research and Clinical Practice Implications of Biomarker and other Preclinical Diagnostics of AD/ADRD Workshop: Clinically Meaningful Outcomes in AD/ADRD Trials Enabling Technologies and Disease Monitoring Caregivers’ Reactions and Experience: Imaging Dementia Evidence for Amyloid Scanning CARE IDEAS Webinar on Stigma and Dementia from Shana Stites, a trainee at the Penn ADRC 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers 2021
- Support at least 6 projects or activities that examine topics related to understanding the impact of AD/ADRD diagnosis on individuals and families and related topics including projects that:
- Evaluate the impact of dementia diagnosis, including the range of terms in clinical use and the perceived social stigma on self-perceptions, depression, anxiety, social isolation, inter-personal relationships, quality of life, and subsequent care for persons living with dementia.
- Conduct research in diverse populations, geographic settings, and environments of care to understand desirability, feasibility, and accessibility of early detection tools for dementia risk, impacts on health decisions, and adherence to use.
- Conduct research to determine data sufficiency and algorithmic fairness considerations across dementia screening and detection tools that engage routine health related data to promote equitable validation, use, and adoption of these tools in real world settings.
- Curate or use representative real-world primary care and population-based data resources to accelerate research on the development of fair and equitable detection and risk stratification tools for AD/ADRD; elucidate the mechanisms driving disparities in diagnosis, diagnosis timing, and post-diagnosis care; and improve equity in care.
Summary of Key Accomplishments
NIA has convened experts to discuss a variety of questions related to the impact of diagnosis. In 2021, an NIA-supported expert meeting was held that addressed behavioral and social science research questions prompted by the use of biomarkers and other measures (e.g., cognitive, digital/sensor data) for pre-clinical AD/ADRD diagnosis, including the personal, social, ethical, legal, economic, health equity, and healthcare implications for individuals and their families; the impact of disclosure of preclinical diagnosis on identity and self-concept, study partners and interpersonal relationships; interactions with the healthcare system, participation in the workforce, and other outcomes. It also addressed the implications of preclinical diagnosis of AD/ADRD for the design and conduct of AD/ADRD prevention research.
In 2022, NIA began funding four ongoing awards focused on understanding the relationships between persons living with dementia, clinicians, and their care partners and how they communicate with each other during clinical visits to evaluate the implications for decision-making, health, and well-being. More recently, in 2024, NIA held an expert meeting on clinically meaningful outcomes in AD/ADRD trials to explore clinically meaningful change in the context of AD/ADRD trials and identified research gaps, opportunities, and tools to advance patient-centered, equitable assessment of clinically meaningful change focused on biomarker status, cognition, and everyday function. Also in 2024, NIA held a roundtable on measurement of subjective experience in dementia to explore how technology and passive sensing can be used to characterize behaviors that may approximate subjective experience in those who can no longer self-report. The insights from these meetings, as well as ongoing research, will help inform future priority areas and research opportunities to better understand the impact of AD/ADRD diagnosis on individuals and families.
Furthermore, NIA launched the PREPARE Challenge (Pioneering Research for Early Prediction of AD/ADRD) in 2023 to advance solutions for accurate, innovative, and representative early prediction of AD/ADRD through three challenge phases that successively build on each other. Awards for the first phase will be made in late 2024, and phase II is expected to begin in September 2024.
The key accomplishments summary is current as of July 2024.