Abstract
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.
Highlights
In the last decades, various organizations, associations, and support groups have emerged around chronic patients and people with disabilities as well as their families, mobilizing their Blay expertise^ (Epstein 1998) for mutual support, improved health services and access, advocacy, and collaborative research
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 Alzheimer’s disease (AD) are embedded in the discursive context of stigmatization and revised disease conception
Research Questions and Main Objectives. Starting from these general political-ethical issues we want to examine how advocacy and representation in the context of AD are embedded in the discursive context of stigmatization and revised disease conception
Summary
Various organizations, associations, and support groups have emerged around chronic patients and people with disabilities as well as their families, mobilizing their Blay expertise^ (Epstein 1998) for mutual support, improved health services and access, advocacy, and collaborative research. While previous research on the dynamics of POs and disability advocacy organizations focused on POs involvement in healthcare and research settings (Rabeharisoa et al 2014; Luce et al 2011) or on their emancipatory activities (Epstein 1998), we wish to examine these POs as (sometimes conflicting) assemblages of caretakers and patients/people with disabilities in order to gain insights into POs’ claims for empowering collective representation, advocacy, and autonomy These claims are becoming an important expression of deliberative democracy (e.g., Elster 1998) in the context of neo-liberal managed care and health governance (Dent 2006)
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