Patient Advocacy in Dementia: The Culture and Ethics of Policy-Making and

This chapter explores the role and social practices of patient organizations in the context of Alzheimer’s disease and related dementias (ADRD). After discussing typologies of patient advocacy organizations, we focus on how ADRD patient organizations show a strong biopolitical impact on health policy governance and national research policies. Moreover, we discuss the key normative concepts of patient representation and inclusion in patient organizations and how these norms vary cross-culturally in their interpretation and application in advocacy.