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

Silke Schicktanz, Aviad Raz

Research output: Chapter in Book/Report/Conference proceedingChapterpeer-review


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.
Original languageAmerican English
Title of host publicationLiving with Dementia: Neuroethical Issues and International Perspectives
EditorsVeljko Dubljević, Frances Bottenberg
Place of PublicationCham
PublisherSpringer International Publishing AG
Number of pages14
ISBN (Print)9783030620738
StatePublished - 23 Jan 2021

Publication series

NameAdvances in Neuroethics
PublisherSpringer International Publishing


  • Alzheimer’s disease 
  • Dementia 
  • Germany 
  • Israel 
  • Patient advocacy 
  • Representation 


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