Citizenship in action: the lived experiences of citizens with dementia who campaign for social change

References

• Allsop, J., K. Jones, and R. Baggott. 2004. “Health Consumer Groups in the UK: A New Social Movement?” Sociology of Health and Illness 26 (6): 737–756.10.1111/shil.2004.26.issue-6
   PubMed Web of Science ®Google Scholar
• Alzheimer’s Disease International. 2012a. How to Successfully Involve People with Dementia in Speaking Roles for Organisations. London: Alzheimer’s Disease International.
   Google Scholar
• Alzheimer’s Disease International. 2012b. The World Alzheimer Report. London: Alzheimer’s Disease International.
   Google Scholar
• Attree, P., S. Morris, S. Payne, S. Vaughan, and S. Hinder. 2011. “Exploring the Influence of Service User Involvement on Health and Social Care Services for Cancer.” Health Expectations 14 (1): 48–58.10.1111/j.1369-7625.2010.00620.x
   PubMed Web of Science ®Google Scholar
• Barton, L. 1993. “The Struggle for Citizenship: The Case of Disabled People.” Disability, Handicap & Society 8 (3): 235–248.
   Google Scholar
• Bauman, Z. 1999. In Search of Politics. Oxford: Polity.
   Google Scholar
• Bartlett, R. 2014. “The Emergent Modes of Dementia Activism.” Ageing & Society. 34 (4): 623–644.
   Web of Science ®Google Scholar
• Bartlett, R. 2012. “Modifying the Diary Interview Method to Research the Lives of People with Dementia.” Qualitative Health Research 22 (12): 1717–1726.10.1177/1049732312462240
   PubMed Web of Science ®Google Scholar
• Bartlett, R., and D. O’Connor. 2010. Broadening the Dementia Debate: Toward Social Citizenship. Bristol: Policy Press.
   Google Scholar
• Beard, R. 2004a. “Advocating Voice: Organisational, Historical and Social Milieux of the Alzheimer’s Disease Movement.” Sociology of Health and Illness 26 (6): 797–819.10.1111/shil.2004.26.issue-6
   PubMed Web of Science ®Google Scholar
• Beard, R. 2004b. “In Their Voices: Identity Preservation and Experiences of Alzheimer’s Disease.” Journal of Aging Studies 18: 415–428.10.1016/j.jaging.2004.06.005
   Web of Science ®Google Scholar
• Beard, R., and P. Fox. 2008. “Resisting Social Disenfranchisement: Negotiating Collective Identities and Everyday Life with Dementia.” Social Science and Medicine 66 (7): 1509–1520.10.1016/j.socscimed.2007.12.024
   PubMed Web of Science ®Google Scholar
• Beard, R., and T. Neary. 2013. “Making Sense of Nonsense: Experiences of Mild Cognitive Impairment.” Sociology of Health and Illness 35 (1): 130–146.10.1111/shil.2013.35.issue-1
   PubMedGoogle Scholar
• Beckett, A. 2005. “Reconsidering Citizenship in the Light of the Concerns of the UK Disability Movement.” Citizenship Studies 9 (4): 405–421.10.1080/13621020500211412
   Google Scholar
• Behuniak, S. 2010. “Toward a Political Model of Dementia: Power as Compassionate Care.” Journal of Aging Studies 24 (4): 231–240.10.1016/j.jaging.2010.05.003
   Web of Science ®Google Scholar
• Behuniak, S. 2011. “The Living Dead? The Construction of People with Dementia as Zombies.” Ageing & Society 31: 70–92.
   Web of Science ®Google Scholar
• Charmaz, K. 1991. Good Days and Bad Days: The Self in Chronic Illness. New Brunswick, NJ: Rutgers University Press.
   Google Scholar
• Clare, L. 2002. “We’ll Fight It as Long as We Can: Coping with the Onset of Alzheimer’s Disease.” Ageing and Mental Health 6 (2): 139–148.10.1080/13607860220126826
   PubMed Web of Science ®Google Scholar
• Clare, L., J. Rowlands, and R. Quin. 2008. “Collective Strength: The Impact of Developing a Shared Social Identity in Early-stage Dementia.” Dementia: The International Journal of Social Research and Practice 7: 9–30.10.1177/1471301207085365
   Google Scholar
• Cotterell, P., G. Harlow, C. Morris, P. Beresford, B. Hanley, A. Sargeant, J. Sitzia, and K. Staley. 2011. “Service User Involvement in Cancer Care.” Health Expectations 14 (2): 159–169.10.1111/j.1369-7625.2010.00627.x
   PubMed Web of Science ®Google Scholar
• Department of Health. 2012. The Prime Minister’s Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015: A Report on Progress. London: Stationary Office.
   Google Scholar
• Ellison, N. 2000. “Proactive and Defensive Engagement: Social Citizenship in a Changing Public Sphere.” Sociological Research Online 5: 3.
   Web of Science ®Google Scholar
• Emery, V., B. Olga, and T. Oxman. 2003. Dementia: Presentations, Differential Diagnosis and Nosology. Baltimore, MD: John Hopkins University Press.
   Google Scholar
• Gilleard, C., and P. Higgs. 2004. Cultures of Ageing: Self, Citizen and the Body. Harlow: Pearson Education Limited.
   Google Scholar
• Gilmour, J., and T. Brannely. 2010. “Representations of People with Dementia – Subaltern, Person, Citizen.” Nursing Inquiry 17 (3): 240–247.10.1111/nin.2010.17.issue-3
   PubMed Web of Science ®Google Scholar
• Goffman, E. 1959. The Presentation of Self. London: Penguin Books.
   Google Scholar
• Hammersley, M., and P. Atkinson. 2007. Ethnography: Principles and Practice. 3rd ed. London: Routledge.
   Google Scholar
• Heater, D. 1999. What is Citizenship? Malden: Blackwell Publishers.
   Google Scholar
• Hochschild, A. 1983. The Managed Heart: Commercialization of Human Feeling. Berkeley: University of California Press.
   Google Scholar
• Hope, K., D. Pulsford, R. Thompson, A. Capstick, and T. Heyward. 2007. “Hearing the Voice of People with Dementia in Professional Education.” Nurse Education Today 27: 821–824.10.1016/j.nedt.2007.06.005
   PubMed Web of Science ®Google Scholar
• Hughes, B. 2009. “Disability Activisms: Social Model Stalwarts and Biological Citizens.” Disability & Society 24 (6): 677–688.
   Web of Science ®Google Scholar
• Isin, E., and B. Turner. 2007. “Investigating Citizenship: An Agenda for Citizenship Studies.” Citizenship Studies 11 (1): 5–17.10.1080/13621020601099773
   Google Scholar
• Jayasooria, D. 1999. “Disabled People: Active or Passive Citizens – Reflections for the Malaysian Experience.” Disability & Society 14 (3): 341–352.
   Web of Science ®Google Scholar
• Kjellberg, A. 2002. “Being a Citizen.” Disability & Society 17 (2): 187–203.
   Web of Science ®Google Scholar
• Knauss, J., and D. Moyer. 2006. “The Role of Advocacy in Our Adventure with Alzheimer’s.” Dementia: The International Journal of Social Research and Practice 5: 67–71.10.1177/1471301206059755
   Google Scholar
• Langdon, S., A. Eagle, and J. Warner. 2007. “Making Sense of Dementia in the Social World: A Qualitative Study.” Social Science and Medicine 64 (4): 989–1000.10.1016/j.socscimed.2006.10.029
   PubMed Web of Science ®Google Scholar
• Lister, R. 2000. “Strategies for Social Inclusion: Promoting Social Cohesion or Social Justice.” In Social Inclusion: Possibilities and Tensions, edited by A. Stewart and P. Askonas, 37–54. Basingstoke: Palgrave MacMillan.
   Google Scholar
• Lister, R. 2007. “Inclusive Citizenship: Realizing the Potential.” Citizenship Studies 11 (1): 49–61.10.1080/13621020601099856
   Google Scholar
• MacRae, H. 2008. “Making the Best You Can of It’: Living with Early-Stage Alzheimer’s Disease.” Sociology of Health and Illness 30 (3): 396–412.10.1111/j.1467-9566.2007.01056.x
   PubMed Web of Science ®Google Scholar
• Martin, B. 2007. “Activism, Social and Political.” In (2007) Encyclopaedia of Activism and Social Justice. vol. 1, edited by G. Anderson and K. Herr, 19–27. Thousand Oaks: Sage.
   Google Scholar
• Office of the Prime Minster. 2006. Promoting Effective Citizenship and Community Empowerment: A Guide for Local Authorities on Enhancing Capacity and Public Participation. London: Office of the Prime Minster.
   Google Scholar
• O’Sullivan, G., C. Hocking, and D. Spence. 2013. “Dementia: The Need for Attitudinal Change.” Dementia: The International Journal of Social Research and Practice 13 (1): 1–15.
   Google Scholar
• Paterson, K., and B. Hughes. 1999. “Disability Studies and Phenomenology: The Carnal Politics of Everyday Life.” Disability & Society 14 (5): 597–610.
   Web of Science ®Google Scholar
• Pink, S. 2009. Doing Sensory Ethnography. London: Sage.
   Google Scholar
• Redley, M. 2009. “Understanding the Social Exclusion and Stalled Welfare of Citizens with Learning Disabilities.” Disability & Society 24 (4): 489–501.
   Web of Science ®Google Scholar
• Reeve, D. 2002. “Negotiating Psycho-emotional Dimensions of Disability and Their Influence on Identity Constructions.” Disability & Society 17 (5): 493–508.
   Web of Science ®Google Scholar
• Richards, L. 2005. Handling Qualitative Data: A Practical Guide. London: Sage.
   Google Scholar
• Richardson, L. 1997. Fields of Play: Constructing an Academic Life: New Brunswick. New Brunswick, NJ: Rutgers University Press.
   Google Scholar
• Schneider, J. 1998. “Work Interventions in Mental Health Care: Some Arguments and Recent Evidence.” Journal of Mental Health 7 (1): 81–94.
   Google Scholar
• Thomas, C. 1999. Female Forms: Experiencing and Understanding Disability. Buckingham: Open University Press.
   Google Scholar
• Thomas, C. 2007. Sociologies of Disability and Illness: Contested Ideas in Disability Studies and Medical Sociology. New York: Palgrave Macmillan.
   Google Scholar
• Van Houten, D., and C. Bellemakers. 2002. “Equal Citizenship for All. Disability Policies in the Netherlands: Empowerment of Marginals.” Disability & Society 17 (2): 171–185.
   Web of Science ®Google Scholar
• Wallcraft, J., Rose J. Reid, and A. Sweeney. 2003. On Our Own Terms: Users and Survivors of Mental Health Services Working Together for Support and Change. Unpublished Report. Sainsbury Centre for Mental Health: London.
   Google Scholar
• Weaks, D., H. Wilkinson, A. Houston, and J. McKillop. 2012. Perspectives on Ageing and Dementia. York: Joseph Rowntree Foundation.
   Google Scholar
• Wendall, S. 1996. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge.
   Google Scholar
• Whitfield, K. 2006. “Inclusivity and Dementia: Health Services Planning with Individuals with Dementia.” HealthCare Policy 1 (2): 121–134.
   Google Scholar
• World Health Organisation. 2012. Dementia: A Public Health Priority. Geneva: World Health Organisation.
   Google Scholar