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

Before their application in primary care, the clinical and personal benefit-harm relationship in the context of preventive and therapeutic options as well as possible psychosocial effects, such as stigmatization, must be determined. For this purpose, it is necessary to consider attitudes, needs and expectations of both physicians, especially general practitioners, and patients and their relatives to ensure participatory decision-making. This interdisciplinary project will empirically determine attitudes, needs and relevant risk and health competencies of GPs and potentially affected individuals using a mixed methods approach (online survey for GPs and a paper-based survey for patients and relatives as well as semi-structured interviews). Different future scenarios, such as AD risk assessment in German primary care considering pluralistic orientations as well as social, economic and legal factors, will be ethically reflected. Complemented by an AD risk communication analysis, a digital risk understanding tool, and a non-stigmatizing language analysis, we will eventually develop communication guidelines, digital resources, and practical materials for primary care. Visual materials and explainer videos on a project website will also inform a lay audience.