Abstract
This paper examines how Alzheimer's disease (AD) patient support organizations (POs) located in diverse healthcare regimes enable patients to claim and construct their rights as citizens. Since citizenship rights of people with AD are debated widely, it is important to recognize the role of POs in enabling people to construct citizenship identities. This paper thus examines the factors that shape the citizenship projects of the AD POs. Since collective health-related behavior changes in line with national differences, we compare the biggest AD POs in three starkly distinct healthcare regimes: the Alzheimer's Association in the US (ALZ), the Deutsche Alzheimer Gesellschaft (German Alzheimer's Association) in Germany (DAG), and Alzheimer's Society in the UK (AS), to examine how distinct health policy contexts shape their citizenship projects. Based on our website analysis of the three POs and other related secondary documents, we argue that the way each POs work toward enabling its members to claim rights and assume responsibilities depend upon the nature of healthcare funding and resource allocation for AD care. Since AD involves long-term care, the ways in which the three POs enable the people with AD to secure their care expenses set apart the nature of citizenships enactments.
Highlights
Specialty section: This article was submitted to Medical Sociology, a section of the journal Frontiers in SociologyReceived: 07 November 2019 Accepted: 04 March 2020 Published: 02 April 2020Citation: Mitra S and Schicktanz S (2020) Alzheimer’s Patient Organizations’ Role in Enabling Citizenship Projects: A Comparison of the USA, Germany, and the UK
This paper contributes toward enhancing our understanding of the role of healthcare systems in the Patient support organizations (POs)’s agendas and their arenas for citizenship projects
Our findings indicate that since Alzheimer’s disease (AD) involves long-term care, which is expensive, the ways in which the three POs enable the people with AD to plan their care expenses set apart the nature of citizenship enactments
Summary
Specialty section: This article was submitted to Medical Sociology, a section of the journal Frontiers in SociologyReceived: 07 November 2019 Accepted: 04 March 2020 Published: 02 April 2020. Patient support organizations (POs) have been playing a cardinal role in addressing this crucial healthcare crisis through their activities of care, communication, and advocacy. Often such engagement remains limited to representation of issues as an act of upholding patients’ epistemic authorities rather than concretely engaging in the decision-makings of policies that impact them (Jongsma et al, 2017; Madden and Speed, 2017). POs enable the patients to identify their rights and understand their responsibilities These often take the form of citizenship projects as they create arenas for its members to perform their identities and claim their entitlements
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