Skip to main content
SpringerLink
Log in

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

  • Chapter
  • First Online:
Living with Dementia

Part of the book series: Advances in Neuroethics ((AIN))

  • 548 Accesses

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
eBook
USD 16.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 99.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 139.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Notes

  1. 1.

    This chapter draws on the following previously conducted research: Raz et al. [1]; Schicktanz [2], Schicktanz et al. [3].

  2. 2.

    http://www.alz.org/stl/in_my_community_14848.asp.

  3. 3.

    See http://www.alz.org/ [Accessed 14 June 2013].

  4. 4.

    German Association for Alzheimer’s, own translation, see http://www.deutsche-alzheimer.de/ [Accessed 14 June 2013] only available in German.

  5. 5.

    See http://www.deutsche-alzheimer.de/unser-service/archiv-alzheimer-info/ethik-und-alzheimer.html [accessed 14 June 2013].

  6. 6.

    Whether it is possible, practically and theoretically, to eliminate all social categories of identity as a consequence can be doubted. However, this reservation does not contradict to some extent the attempts to overcome existing limitations.

  7. 7.

    http://www.alzheimer-europe.org/Policy-in-Practice2/Our-opinion-on/Advance-directives.

References

  1. Raz A, Jordan I, Schicktanz S. Exploring the positions of German and Israeli patient organizations in the bioethical context of end-of-life policies. Health Care Anal. 2014;22:143–59. https://doi.org/10.1007/s10728-012-0213-4.

    Article  PubMed  Google Scholar 

  2. Schicktanz S. The visionary shaping of dementia research: imaginations and scenarios in biopolitical narratives and ethical reflections. In: Schweda M, Pfaller L, Brauer K, Adloff F, Schicktanz S, editors. Planning later life. Bioethics and public health in ageing societies. 1st ed. Oxon, New York: Routledge; 2017. p. 205–27.

    Chapter  Google Scholar 

  3. Schicktanz S, Rimon-Zarfaty N, Raz A, Jongsma K. Patient representation and advocacy for alzheimer disease in Germany and Israel: the relevance of stigma and disease conception. J Bioeth Inq. 2018;15:369–80. https://doi.org/10.1007/s11673-018-9871-8.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Chandler S. Competing realities: the contested terrain of mental health advocacy. New York: Praeger; 1990.

    Google Scholar 

  5. Brown P, Rachel Morello-Frosch R, Zavestoski S. Contested illnesses, citizens, science, and health social movements. Berkeley: University of California Press; 2011.

    Book  Google Scholar 

  6. Brown P, Zavestoski S, McCormick S, Mayer B, Morello-Frosch R, Gasior Altman R. Embodied health movements: new approaches to social movements in health. Sociol Health Illn. 2004;26:50–80. https://doi.org/10.1111/j.1467-9566.2004.00378.x.

    Article  PubMed  Google Scholar 

  7. Wood B. Patient power? The politics of patients’ associations in Britain and America. Birmingham: Open University Press; 2000.

    Google Scholar 

  8. World Health Organization. Towards a dementia plan: a WHO guide. 2018. https://apps.who.int/iris/bitstream/handle/10665/272642/9789241514132-eng.pdf. Accessed 7 Oct 2019.

  9. Raz A, Jongsma KR, Rimon-Zarfaty N, Späth E, Bar-Nadav B, Vaintropov E, et al. Representing autism: challenges of collective representation in German and Israeli associations for and of autistic people. Soc Sci Med. 2018;200:65–72. https://doi.org/10.1016/j.socscimed.2018.01.024.

    Article  PubMed  Google Scholar 

  10. Charlton J. Nothing about us without us: disability oppression and empowerment. Berkeley, Los Angeles, London: University of California Press; 2000.

    Google Scholar 

  11. Paul D. Patient advocacy in newborn screening: continuities and discontinuities. Am J Med Genet C Semin Med Genet. 2008;148:8–14. https://doi.org/10.1002/ajmg.c.30166.

    Article  Google Scholar 

  12. Beard RL. Advocating voice: organisational, historical, and social milieux of the Alzheimer’s disease movement. Sociol Health Illn. 2004;26:797–819. https://doi.org/10.1111/j.0141-9889.2004.00419.x.

    Article  PubMed  Google Scholar 

  13. Beard RL, Fox PJ. Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Soc Sci Med. 2008;6:1509–20. https://doi.org/10.1016/j.socscimed.2007.12.024.

    Article  Google Scholar 

  14. Fox P. The role of the concept of Alzheimer’s disease in the development of the Alzheimer’s Association in the United States. In: Whitehouse P, Maurer K, Ballenger J, editors. The concept of Alzheimer’s disease: biological, clinical, and cultural perspectives. Baltimore: The Johns Hopkins University Press; 2000. p. 209–33.

    Google Scholar 

  15. Langstrup H. Interpellating patients as users: patient associations and the project-ness of stem cell research. Sci Technol Hum Values. 2010;36:573–94. https://doi.org/10.1177/0162243910368397.

    Article  Google Scholar 

  16. Crossley N. Contesting psychiatry: social movements in mental health. New York: Routledge; 2006.

    Book  Google Scholar 

  17. Morgan S. Into our own hands: the women’s health movement in the United States, 1969–1990. Piscataway: Rutgers University Press; 2002.

    Google Scholar 

  18. Callon M, Rabeharisoa V. The growing engagement of emergent concerned groups in political and economic life—lessons from the French association of neuromuscular disease patients. Sci Technol Hum Values. 2008;33:230–61. https://doi.org/10.1177/0162243907311264.

    Article  Google Scholar 

  19. Jox RJ, Spickhoff A, Marckmann G. Forschung mit nicht Einwilligungsfähigen: Nach dem Gesetz ist vor dem Gesetz. Dtsch Arztebl. 2017;114:A520/B–451/C–441.

    Google Scholar 

  20. Korzilius H. Forschung an Nichteinwilligungsfähige: Bundestag stimmt für umstrittenes Gesetz zu klinischen Prüfungen. Dtsch Arztebl. 2016;113:A–2078/B–1728/C–1712.

    Google Scholar 

  21. National Advisory Board of Bioethics. Research involving persons with mental disorders that may affect decisionmaking capacity. 1998. https://bioethicsarchive.georgetown.edu/nbac/capacity/TOC.htm. Accessed 7 Oct 2019.

  22. Council of Europe. Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine. 1997. https://www.coe.int/en/web/conventions/full-list/-/conventions/rms/090000168007cf98. Accessed 7 Oct 2019.

  23. Epstein S. Impure science: AIDS, activism, and the politics of knowledge. Berkeley: University of California Press; 1996.

    Google Scholar 

  24. Schicktanz S, Schweda M, Franzen M. ‘In a completely different light’? – The role of being affected for epistemic perspectives and moral attitudes of patients, relatives and lay people. Med Health Care Philos. 2008;11:57–72. https://doi.org/10.1007/s11019-007-9074-2.

    Article  PubMed  Google Scholar 

  25. Rippe KP. Ethikkommissionen in der deliberativen Demokratie. In: Kettner M, editor. Angewandte Ethik als Politikum. Frankfurt am Main: Suhrkamp; 2000. p. 140–64.

    Google Scholar 

  26. Schicktanz S. The ethical legitimacy of patient organizations’ involvement in politics and knowledge production: epistemic justice as conceptual basis. In: Wehling P, Viehöver W, Koenen S, editors. The public shaping of medical research. Oxon: Routledge; 2015. p. 246–65.

    Google Scholar 

  27. Schicktanz S. Epistemische Gerechtigkeit: Sozialempirie und Per-spektivenpluralismus in der Angewandten Ethik. Dtsch Z Philos. 2012;60:269–84. https://doi.org/10.1524/dzph.2012.0019.

    Article  Google Scholar 

  28. Fricker M. Epistemic injustice: power and the ethics of knowledge. New York: Oxford University Press; 2009.

    Google Scholar 

  29. Jongsma K, Späth E, Schicktanz S. Epistemic injustice in dementia and autism patient organizations: an empirical analysis. AJOB Empir Bioeth. 2017;8:221–33. https://doi.org/10.1080/23294515.2017.1402833.

    Article  PubMed  Google Scholar 

  30. O’Donovan O, Moreira T, Howlett E. Tracking transformations in health movement organisations: Alzheimer’s disease organisations and their changing ‘cause regimes’. Soc Mov Stud. 2013;12:316–34. https://doi.org/10.1080/14742837.2013.777330.

    Article  Google Scholar 

  31. Hazan H. Against hybridity: social impasses in a globalizing world. Cambridge: Malden Polity Press; 2014.

    Google Scholar 

  32. Lock M. The Alzheimer conundrum: entanglements of aging and dementia. Princeton, Woodstock: Princeton University Press; 2013.

    Book  Google Scholar 

  33. Werner P, Mittelman S, Goldstein D, Heinik J. Family stigma and caregiver burden in Alzheimer disease. Gerontologist. 2012;52:89–97. https://doi.org/10.1093/geront/gnr117.

    Article  PubMed  Google Scholar 

  34. Aisen PS, Cummings J, Jack CR Jr, Morris JC, Sperling R, Frölich L, et al. On the path to 2025: understanding the Alzheimer’s disease continuum. Alzheimers Res Ther. 2017;9:60. https://doi.org/10.1186/s13195-017-0283-5.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  35. Gilad D, Rimmerman A. The mission and development processes of the disability movement in Israel and the United States: a comparison. J Disabil Policy Stud. 2014;24:227–37. https://doi.org/10.1177/1044207312463238.

    Article  Google Scholar 

  36. Heyer KC. The ADA on the road: disability rights in Germany. Law Soc Inq. 2002;27:723–62. https://doi.org/10.1111/j.1747-4469.2002.tb00980.x.

    Article  Google Scholar 

  37. Mor S. Disability rights in Israel: between socio-political and legal recognition. In: Gal J, Eisenstadt M, editors. Access to justice and social rights. Jerusalem: Taub Center for Social Policy Studies in Israel; 2009. p. 80–130.

    Google Scholar 

  38. World Health Organization. A declaration on the promotion of patients’ rights in Europe. 1994. http://www.who.int/genomics/public/eu_declaration1994.pdf. Accessed 10 Oct 2019.

Download references

Acknowledgments

We would like to thank our colleagues Nitzan Ramon-Zarfaty, Karin Jongsma, and Bosmat Bar-Nadav for their collaboration in empirical data collection and analysis of the studies which are the backbone of this chapter. We would also like to thank the editors for constructive and detailed feedback regarding content and editorial aspects. This work was generously supported by Lower-Saxony— Israeli collaboration project ZN3015, ‘Organized Patient Participation in Health Care: Collective Advocacy, Representation and Autonomy in Socio-Ethical Perspective (Abbr. OPARA)’. We are grateful to all the respondents, as well as to the participating associations, in Germany and Israel.

Author information

Authors and Affiliations

  1. University Medical Center Göttingen, Göttingen, Germany

    Silke Schicktanz

  2. Ben-Gurion University of the Negev, Be’er Sheva, Israel

    Aviad Raz

Authors
  1. Silke Schicktanz
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Aviad Raz
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Silke Schicktanz .

Editor information

Editors and Affiliations

  1. Department of Philosophy and Religious Studies, and Science Technology and Society (STS) Program, North Carolina State University, Raleigh, NC, USA

    Veljko Dubljević

  2. Department of Philosophy, University of North Carolina, Greensboro, NC, USA

    Frances Bottenberg

Rights and permissions

Reprints and permissions

Copyright information

© 2021 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Schicktanz, S., Raz, A. (2021). Patient Advocacy in Dementia: The Culture and Ethics of Policy-Making and Representation. In: Dubljević, V., Bottenberg, F. (eds) Living with Dementia. Advances in Neuroethics. Springer, Cham. https://doi.org/10.1007/978-3-030-62073-8_13

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-62073-8_13

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-62072-1

  • Online ISBN: 978-3-030-62073-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation