Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel

Journal of Bioethical Inquiry 15 (3):369-380 (2018)
  Copy   BIBTEX

Abstract

This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics within and across the POs and across national contexts. We identified a heterogeneous landscape, with the only Israeli PO focusing strongly on caretakers, whereas in Germany several POs claim to represent this patient collective. Shared aims of all POs were fighting social stigma, balancing the loss of patients’ individual autonomy, and the well-being of caretakers. By highlighting the emergence of new groups of dementia self-advocacy against the more traditional advocacy by others, this study highlights how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception. Future developments in early diagnosis and prediction of dementia, with more affected people likely to conduct dementia self-advocacy, might challenge existing representation structures even more.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 93,745

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Critiquing the Critique of Advocacy.Ari Neeman - 2023 - American Journal of Bioethics 23 (7):97-99.
Qualitative Assessment of Self-Identity in Advanced Dementia.Sadhvi Batra, Jacqueline Sullivan, Beverly R. Williams & David S. Geldmacher - 2015 - Dementia: The International Journal of Social Research and Practice 15 (5):1260-1278.

Analytics

Added to PP
2018-08-02

Downloads
18 (#201,463)

6 months
7 (#1,397,300)

Historical graph of downloads
How can I increase my downloads?

Author's Profile