VA Medical Center-Palo Alto, Palo Alto, CA, USA.
Stanford University, School of Medicine, Stanford, CA, USA.
J Alzheimers Dis. 2022;90(3):953-962. doi: 10.3233/JAD-220458.
The brain changes of Alzheimer's disease and other degenerative dementias begin long before cognitive dysfunction develops, and in people with subtle cognitive complaints, clinicians often struggle to predict who will develop dementia. The public increasingly sees benefits to accessing dementia risk evidence (DRE) such as biomarkers, predictive algorithms, and genetic information, particularly as this information moves from research to demonstrated usefulness in guiding diagnosis and clinical management. For example, the knowledge that one has high levels of amyloid in the brain may lead one to seek amyloid reducing medications, plan for disability, or engage in health promoting behaviors to fight cognitive decline. Researchers often hesitate to share DRE data, either because they are insufficiently validated or reliable for use in individuals, or there are concerns about assuring responsible use and ensuring adequate understanding of potential problems when one's biomarker status is known. Concerns include warning people receiving DRE about situations in which they might be compelled to disclose their risk status potentially leading to discrimination or stigma. The Advisory Group on Risk Evidence Education for Dementia (AGREEDementia) welcomes all concerned with how best to share and use DRE. Supporting understanding in clinicians, stakeholders, and people with or at risk for dementia and clearly delineating risks, benefits, and gaps in knowledge is vital. This brief overview describes elements that made this group effective as a model for other health conditions where there is interest in unfettered collaboration to discuss diagnostic uncertainty and the appropriate use and communication of health-related risk information.
阿尔茨海默病和其他退行性痴呆症的大脑变化早在认知功能障碍出现之前就已经开始了，对于有轻微认知问题的人，临床医生常常难以预测谁会发展为痴呆症。公众越来越多地看到获取痴呆症风险证据（DRE）的好处，例如生物标志物、预测算法和遗传信息，尤其是当这些信息从研究转移到证明对指导诊断和临床管理有用时。例如，一个人知道自己大脑中有高水平的淀粉样蛋白，可能会促使他寻求减少淀粉样蛋白的药物，为残疾做计划，或采取促进健康的行为来对抗认知能力下降。研究人员通常不愿分享 DRE 数据，要么是因为它们在个体使用方面不够验证或可靠，要么是因为担心在一个人的生物标志物状态已知的情况下，确保负责任地使用并确保充分理解潜在问题。这些担忧包括警告接受 DRE 的人，他们可能会被迫披露自己的风险状况，从而导致歧视或污名化。痴呆症风险证据教育咨询小组（AGREEDementia）欢迎所有关注如何最好地分享和使用 DRE 的人。支持临床医生、利益相关者以及痴呆症患者或有痴呆症风险的人的理解，并明确界定风险、收益和知识差距至关重要。本简要概述介绍了使该小组成为其他有兴趣不受限制地合作讨论诊断不确定性以及适当使用和传播与健康相关的风险信息的健康状况的模型的有效因素。
