Abstract

Alzheimer's disease (AD) is a major source of fear and misunderstanding and has become a public health priority. But biomedical research on AD has been marked by disappointment and fierce debate in recent decades. This three-part thesis mobilises different methods to study the controversies, explore their consequences, and propose solutions. The first part is an empirical study that questions the dominance of the amyloid hypothesis through a bibliometric analysis of citation practices and an international survey of researchers promoted by the Alzheimer’s Association. The second part uses a conceptual approach to consider research beyond the amyloid hypothesis and we propose a holistic model to maximise the quality and quantity of information useful to research and patients. The third part explores the ethics of the non-existence of validated treatments and the existence of non-validated treatments with the aim of protecting people's autonomy from non-validated treatments, moralistic attitudes towards prevention, and a fragile economic model underpinning drug development. We argue that the biological and societal complexity of this disease defies reductionism and monopoly, and that the population as a whole, all potentially affected by the many problems AD poses for welfare and justice, should become agents of change to influence the direction of future research and policy.