Preparing Primary Care for Alzheimer’s Disease Risk Communication: Ethical Implications of Early Detection (PREPARE)

Background and aims

Prodromal and preclinical identification of progressive neurological disorders such as Alzheimer’s disease (AD) via etiological (including blood) biomarkers is currently performed in research contexts. Translation into health services, such as the primary care sector, requires clarification of clinical and personal benefits, psychosocial harms, stigma as well as possible futility. For this, attitudes, needs, and expectations of both, clinicians, especially general practitioners (GPs), and patients need to be explored to enable shared-decision making. Adequate communication guidelines and the use of destigmatized language have been identified as a high priority for good care. This interdisciplinary project will provide empirical insight into the attitudes, needs, and relevant risk and health literacy of GPs and potentially affected persons as well as their relatives. We will use a mixed-methods approach, employing an online survey for GPs and a paper-based survey for patients and relatives as well as semi-structured interviews with all stakeholders. In addition, we will ethically reflect on various future scenarios of how AD risk assessment might occur in the German primary care sector considering pluralistic orientations, social, economic, and legal factors. Complemented by an AD risk communication analysis, digital tools for risk comprehension and non-stigmatic language analysis, we will finally develop a set of communication guidelines, digital resources, and practical materials for the primary health care sector. Moreover, visual materials and explanatory videos will be published online on our project website for a broader lay audience.