Attitudes and Expectations regarding Dementia Risk Estimation among the General Population in Germany, Spain, and Switzerland

Abstract Background In recent years, research on risk estimation and early detection of Alzheimer’s disease (AD) advanced swiftly. Studies are investigating the likelihood of developing Alzheimer’s dementia (ADD), even during asymptomatic, preclinical, and prodromal stages of AD. Particular hope is pinned on blood‐based biomarkers as these are less invasive than other methods such as lumbar puncture and Positron Emission Tomography (PET)‐scan. Due to the rapid progress of research in this area, it is anticipated that risk estimation measures will be made available to the general population in the future. As part of the PreTAD project (The Predictive Turn in Alzheimer’s Disease: Ethical, Clinical, Linguistic, and Legal Aspects), our objectives were to investigate attitudes and expectations regarding ADD risk estimation in the general population. Method We conducted online surveys within the general population (representative quota sample) in Germany (N = 1,000), Spain (N = 1,000), and Switzerland (N = 750). Among others, we assessed aspects influencing decision‐making regarding ADD risk estimation, accepted invasiveness of risk estimation measures, preferred information sources, and expected impact of a hypothetical high risk for ADD. Result Preliminary analyses showed that 68% of the German population, 77% of the Spanish population, and 71% of the Swiss population would want to know their risk for developing ADD (rather yes/yes) with a preference for lower invasiveness in all countries (i.e. blood sampling). Physicians were stated as primary information sources regarding risk estimation. Most important aspects influencing decision‐making were existing possibilities to cure or prevent ADD (means > 3,7; 1 = no influence; 5 = strong influence). Individual risk knowledge was rather perceived as a chance to prepare for the future (means > 3.5, 1 = do not agree; 5 = agree) but was also expected to influence feelings of self (means > 3,2) or to cause psychological burden (means > 3,1). Conclusion Acceptance for ADD risk estimation, particularly with low invasive measures, seems rather high in Germany, Spain, and Switzerland indicating promising opportunities for the future integration of such strategies into public health initiatives. Physicians, as primary information sources, should carefully consider individual attitudes and expectations regarding ADD risk estimation as risk disclosure may have several psychological and long‐term implications.