Information Preferences Following ADRD Biomarker Testing
Original Title: Dementia Care Research and Psychosocial Factors
Journal: Alzheimer's & dementia : the journal of the Alzheimer's Association
Overview
This study investigates how individuals with cognitive symptoms and their care partners prefer to receive and share health information after undergoing biomarker testing for Alzheimer's disease and related dementias. Utilizing a mixed-methods approach, researchers analyzed data from 50 symptomatic participants with a mean age of 72.6 years and 36 care partners with a mean age of 67.6 years. The cohort was diverse, including 18.6% Black and 14% Hispanic/Latino individuals. Quantitative results indicated a preference for traditional communication; 84% of participants and 69.4% of care partners favored receiving results via paper copies. Email was also highly ranked, selected by 66% of participants and 72.2% of care partners. In contrast, patient portals were less popular, preferred by only 38% of participants and 47.2% of care partners. Regarding social sharing, 92% of participants and 97.2% of care partners expressed comfort in disclosing results to family and friends, while nearly 98% of respondents were willing to share information with healthcare providers.
Novelty
The study provides a detailed characterization of attitudes toward emerging technologies, such as Artificial Intelligence and virtual platforms, within the context of dementia diagnostics. While previous research often focuses on the clinical accuracy of biomarkers, this work examines the psychosocial dimension of information seeking and the subsequent communication of results. A distinct finding is the persistent demand for physical documentation despite the increasing availability of digital health records. The qualitative focus group discussions highlighted a spectrum of attitudes toward AI-driven tools, ranging from proactive adoption to significant mistrust. This research identifies a specific dissatisfaction with existing information delivery systems, emphasizing that the transition to virtual formats often lacks the person-centered approach required for sensitive cognitive health data. By comparing the preferences of both patients and care partners, the study clarifies how these two groups may have diverging needs, particularly regarding the use of telemedicine and patient portals for complex diagnostic feedback.
Potential Clinical / Research Applications
These findings can inform the design of clinical workflows by ensuring that biomarker results are provided in multiple formats to suit diverse literacy and technological comfort levels. Healthcare systems could implement hybrid delivery models that combine in-person consultation with physical summary documents and follow-up emails. For researchers developing AI-driven educational tools, the data suggests a need for interfaces that prioritize simplicity and build trust through clear explanations of how conclusions are reached. There is also potential to improve patient portals by making them more intuitive for care partners, who showed a higher interest in digital access compared to patients. Additionally, the high comfort level with sharing results among family members supports the development of collaborative digital platforms where patients can easily grant access to their support network. This would facilitate better-coordinated care and help manage the psychosocial impact of an Alzheimer's-related diagnosis through shared understanding and data-driven family discussions.