TY - JOUR
T1 - Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel
AU - Schicktanz, Silke
AU - Rimon-Zarfaty, Nitzan
AU - Raz, Aviad
AU - Jongsma, Karin
N1 - Funding Information:
Deutsche Alzheimer Gesellschaft e. V. (for) Umbrella association (138 regional organizations), registered association Demenz Support Stuttgart GmbH (of) Non-profit private limited liability company, funded by Erich and Liselotte Gradmann foundation Alzheimer Gesellschaft München e. V. (for) Regional association, registered association
Funding Information:
Registered association, funded by Robert-Bosch foundation
Publisher Copyright:
© 2018, The Author(s).
PY - 2018/9/1
Y1 - 2018/9/1
N2 - This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) 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.
AB - This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups (POs) 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.
KW - Advocacy
KW - Dementia
KW - Disease conception
KW - Patient organization
KW - Representation
KW - Stigma
UR - http://www.scopus.com/inward/record.url?scp=85051128104&partnerID=8YFLogxK
U2 - 10.1007/s11673-018-9871-8
DO - 10.1007/s11673-018-9871-8
M3 - Article
C2 - 30066235
AN - SCOPUS:85051128104
SN - 1176-7529
VL - 15
SP - 369
EP - 380
JO - Journal of Bioethical Inquiry
JF - Journal of Bioethical Inquiry
IS - 3
ER -