Multiple NIA IMPACT members participated in the National Academies of Sciences, Engineering, and Medicine (NASEM) virtual workshop entitled, “Behavioral and Social Research and Clinical Practice Implications of Biomarkers and Other Preclinical Diagnostics of Alzheimer’s Disease (AD) and AD-Related Dementias” (AD/ADRD) on June 28 and 29, 2021.
The meeting addressed behavioral and social science research questions raised by the use of biomarkers and other measures (e.g., digital/sensor data) for pre-clinical AD/ADRD diagnosis, including the personal, social, ethical, legal, economic, health equity, and healthcare implications for patients and 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.
IMPACT Collaboratory members who participated in the meeting include:
- Jonathan Jackson, PhD, Executive Committee Member of IMPACT’s Health Equity Team
- Jason Karlawish, MD, Core Leader, IMPACT Ethics & Regulation Core
- Emily Largent, PhD, JD, RN, Associate Core Leader of the IMPACT Ethics & Regulation Core
- Vince Mor, PhD, one of two principal investigators for the IMPACT Collaboratory,
- Lauren Parker, PhD, a newly welcomed adjunct faculty member of the Implementation core
The format of the meeting was a series of panel presentations followed by reflections/discussions by other participants. Mor and Largent presented summaries of their research, and Jackson, Karlawish and Parker were respondents to panel discussions. The meeting summary report was recently released and includes descriptions of the studies presented by Mor and Largent, as well as responses from Jackson and Parker.
Mor discussed screening and disclosure of dementia diagnoses to give patients and families more information to make decisions and prepare for the future. He shared the results of the CARE (Caregivers’ Reactions and Experience) study, which is a supplemental study to the IDEAS (Imaging Dementia—Evidence for Amyloid Scanning) study. IDEAS uses amyloid PET scans to gather more information on patients with an unclear diagnosis, and CARE uses surveys and interviews to examine why these patients and their care partners sought a definitive diagnosis of cognitive defects, how they reacted to the results, and what impact the results had on their future plans.
Emily Largent, presented findings from her research, which used qualitative methods to look at the disclosure of AD biomarker results. Largent asserted that a diagnosis of Alzheimer’s disease before the onset of cognitive impairment will change the lived experience of Alzheimer’s disease for millions of adults. While not all of these people will progress to experiencing cognitive impairment, the diagnosis itself is a “clinical experience” and can change people’s perceptions of themselves as patients. Families are also affected, both because of what it may mean for their own risk, in addition to the risk of becoming a caregiver to their loved one.
Parker, was among the respondents to a panel presentation about issues related to health equity in studies of presymptomatic people. Jason Karlawish responded to the presentations related to implications of diagnosis disclosure.
The full meeting summary report can be found at this link.