Dementia, disability rights and disablism: understanding the social position of people living with dementia

References

• Alzheimer’s Society. 2014. Dementia Friendly Communities Report: ‘When You Get It Right for People with Dementia, Care and Community Life Will Be Much More Inclusive for a Wide Range of People’. London: Alzheimer’s Society.
   Google Scholar
• Alzheimer’s Society. 2016a. Accessed January 23, 2016. https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=341
   Google Scholar
• Alzheimer’s Society. 2016b. Accessed April 28, 2016. http://www.alzheimersresearchuk.org/study-reports-20-drop-in-uk-dementia-incidence-over-two-decades/
   Google Scholar
• BADIN. 2017. “Bridging Aging and Disability International Network.” Accessed April 1, 2017. http://www.badinetwork.org/
   Google Scholar
• Baileya, C., C. L. Clarke, C. Gibb, S. Haining, H. Wilkinson, and S. Tiplady. 2013. “Risky and Resilient Life with Dementia: Review of and Reflections on the Literature.” Health, Risk & Society 15 (5): 390–401. 10.1080/13698575.2013.821460
   Web of Science ®Google Scholar
• Barnes, C. 2012. “Understanding the Social Model of Disability: Past, Present and Future.” In Routledge Handbook of Disability Studies, edited by N. Watson, A. Roulestone and C. Thomas, 12–29. London: Routledge.
   Google Scholar
• Bartlett, R. 2014. “Citizenship in Action: The Lived Experiences of Citizens with Dementia Who Campaign for Social Change.” Disability and Society 29 (8): 1291–1304. 10.1080/09687599.2014.924905
   Web of Science ®Google Scholar
• Bê, Ana. 2012. “Feminism and Disability: A Cartography of Multiplicity.” In Routledge Handbook of Disability Studies, edited by N. Watson, A. Roulestone and C. Thomas, 363–375. London: Routledge.
   Google Scholar
• Beattie, A., G. Daker-White, and J. Gilliard. 2005a. “‘How Can They Tell?’ a Qualitative Study of the Views of Younger People about Their Dementia and Dementia Care Services.” Health and Social Care in the Community 12 (4): 359–368.
   Web of Science ®Google Scholar
• Beattie, A., G. Daker-White, J. Gilliard, and R. Means. 2005b. “'They Don’t Quite Fit the Way We Organise Our Services’—Results from a UK Field Study of Marginalised Groups and Dementia Care.” Disability & Society 20 (1): 67–80. 10.1080/0968759042000283647
   Web of Science ®Google Scholar
• Beresford, P. 2002. “Thinking about ‘Mental Health’: Towards a Social Model.” Journal of Mental Health 11 (6): 581–584. 10.1080/09638230020023921
   Google Scholar
• Beresford, P. and C. Thomas, eds. 2015. Disability and Ageing: A Virtual Special Issue. London: Routledge. Accessed December 20, 2015. http://explore.tandfonline.com/page/ed/cdso-vsi-ageing
   Google Scholar
• Beresford, P., J. Fleming, M. Glynn, C. Bewley, S. Croft, F. Branfield, and K. Postle. 2011. Supporting People: Towards a Person-Centred Approach. Bristol: The Policy Press. 10.2307/j.ctt1t89j30
   Google Scholar
• Bigby, C. 2008. “Beset by Obstacles: A Review of Australian Policy Development to Support Ageing in Place for People with Intellectual Disability.” Journal of Intellectual & Developmental Disability 33 (1): 76–86. 10.1080/13668250701852433
   PubMed Web of Science ®Google Scholar
• Bilge, S. 2010. “Recent Feminist Outlooks on Intersectionality.” Diogenes 57 (1): 58–72. 10.1177/0392192110374245
   Web of Science ®Google Scholar
• Blackman, T. I. M., L. Mitchell, E. Burton, M. Jenks, M. Parsons, S. Raman, and K. Williams. 2003. “The Accessibility of Public Spaces for People with Dementia: A New Priority for the ‘Open City.” Disability & Society 18 (3): 357–371. 10.1080/0968759032000052914
   Web of Science ®Google Scholar
• Boye, F., and E. Yan. 2016. “Abuse of Older Persons with Dementia: A Review of the Literature.” Trauma, Violence, & Abuse 4: 1–21. doi:10.1177/1524838016650185tva.sagepub.com.
   Google Scholar
• Boyle, G. 2014. “Recognising the Agency of People with Dementia.” Disability & Society 29 (7): 1130–1144. 10.1080/09687599.2014.910108
   Web of Science ®Google Scholar
• Brittain, K., L. Corner, L. Robinson, and J. Bond. 2010. “Ageing in Place and Technologies of Place: The Lived Experience of People with Dementia in Changing Social, Physical and Technological Environments.” Sociology of Health & Illness 32 (2): 272–287. 10.1111/shil.2010.32.issue-2
   PubMed Web of Science ®Google Scholar
• Buse, C., and J. Twigg. 2014. “Women with Dementia and Their Handbags: Negotiating Identity, Privacy and ‘Home’ through Material Culture.” Journal of Aging Studies 30: 14–22. 10.1016/j.jaging.2014.03.002
   PubMed Web of Science ®Google Scholar
• Campbell, F. K. 2009. Contours of Ableism: The Production of Disability and Abledness. Basingstoke: Palgrave Macmillan. 10.1057/9780230245181
   Google Scholar
• Campbell, J., and M. Oliver. 1996. Disability Politics: Understanding Our past, Changing Our Future. London: Routledge.
   Google Scholar
• Carter, T., and P. Bersford. 2000. Age and Change Models of Involvement for Older People. Report by the Joseph Rowntree Foundation.
   Google Scholar
• Charlton, J. I. 1998. Nothing about US without Us. Disability, Oppression, and Empowerment. Berkley. C.A.: University of California Press. 10.1525/california/9780520207950.001.0001
   Google Scholar
• Corker, M., and T. Shakespeare, eds. 2002. Disability/Postmodernity: Embodying Disability Theory. London: Continuum.
   Google Scholar
• DaGS. 2016. “Disability and the Global South.” online journal. Accessed February 1, 2016. https://dgsjournal.org/
   Google Scholar
• DAI – Dementia Alliance International. 2017. Accessed April 1, 2017. https://www.dementiaallianceinternational.org/
   Google Scholar
• Daker-White, G., A. M. Beattie, J. Gilliard, and R. Means. 2002. “Minority Ethnic Groups in Dementia Care: A Review of Service Needs, Service Provision and Models of Good Practice.” Aging & Mental Health 6 (2): 101–108. 10.1080/13607860220126835
   PubMed Web of Science ®Google Scholar
• Davis, S., S. Byers, R. Nay, and S. Koch. 2009. “Guiding Design of Dementia Friendly Environments in Residential Care Settings: Considering the Living Experiences.” Dementia 8 (2): 185–203. 10.1177/1471301209103250
   Google Scholar
• Dong, X., R. Chen, and M. A. Simon. 2014. “Elder Abuse and Dementia: A Review of the Research and Health Policy.” Health Affairs 33 (4): 642–649. 10.1377/hlthaff.2013.1261
   Web of Science ®Google Scholar
• Dorenlot, P. 2005. “Editorial. Applying the Social Model of Disability to Dementia: Present-Day Challenges.” Dementia 4 (4): 459–461. 10.1177/1471301205058300
   Google Scholar
• EHRC. 2016. Equality and Human Rights Commission. Accessed Febaury 2, 2016. http://www.equalityhumanrights.com/en
   Google Scholar
• Fahey-McCarthy, E., M. McCarron, K. Connaire, and P. McCallion. 2009. “Developing an Education Intervention for Staff Supporting Persons with an Intellectual Disability and Advanced Dementia.” Policy and Practice in Intellectual Disabilities 6 (4): 267–275. 10.1111/ppi.2009.6.issue-4
   Web of Science ®Google Scholar
• Finkelstein, V. 2001. A Personal Journey into Disability Politics. The Disability Studies Archive UK, Centre for Disability Studies, University of Leeds. Accessed May 12, 2015. www.independentliving.org/docs3/finkelstein01a
   Google Scholar
• Gilleard, C., and P. Higgs. 2000. Culture of Ageing: Self, Citizen and the Body. London: Prentice Hall.
   Google Scholar
• Gilleard, C., and P. Higgs. 2013. Ageing, Corporeality and Embodiment. London: Anthem Press.
   Google Scholar
• Goodley, D., B. Hughes, and L. Davis. 2012. Disability and Social Theory. New Developments and Directions. Basingstoke: Palgrave Macmillan. 10.1057/9781137023001
   Google Scholar
• Grech, S. 2012. “Disability and the Majority World: A Neocolonial Approach.” In Disability and Social Theory: New Developments and Directions, edited by D. Goodley, B. Hughes and L. Davis, 52–69. Basingstoke: Palgrave Macmillan. 10.1057/9781137023001
   Google Scholar
• Grech, S. 2015. Disability and Poverty in the Global South. Basingstoke: Palgrave Macmillan.10.1057/9781137307989
   Google Scholar
• Hennings, J. 2016. Life Change, Loss and Relationships: Meaning Making by Spouses of People with Advanced Dementia Living in Nursing Homes. Unpublished PhD Thesis. Lancaster University.
   Google Scholar
• Higgs, P., and I. Rees Jones. 2009. Medical Sociology and Old Age. London: Routledge.
   Google Scholar
• Hunt, P., ed. 1966. Stigma: The Experience of Disability. London: Chapman.
   Google Scholar
• IHAL. 2017. Improving Health and Live Learning Disability Observatory. Accessed April 1, 2017. http://www.improvinghealthandlives.org.uk/.
   Google Scholar
• Janicki, M. P., T. Heller, G. B. Seltzer, and J. Hogg. 1996. “Practice Guidelines for the Clinical Assessment and Care Management of Alzheimer’s Disease and Other Dementias among Adults with Intellectual Disability.” Journal of Intellectual Disability Research 40 (4): 374–382.
   PubMedGoogle Scholar
• Keady, J., S. Campbell, H. Barnes, R. Ward, X. Li, C. Swarbrick, S. Burrow, and R. Elvish. 2012. “Neighbourhoods and Dementia in the Health and Social Care Context: A Realist Review of the Literature and Implications for UK Policy Development.” Reviews in Clinical Gerontology 22: 150–163. 10.1017/S0959259811000268
   Google Scholar
• Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.
   Google Scholar
• Lyman, K. 1989. “Bringing the Social Back in: A Critique of the Biomedicalisation of Dementia.” The Gerontological Society of America 29 (5): 597-597.
   Google Scholar
• McCall, L. 2005. “The Complexity of Intersectionality.” Signs, Journal of Women in Culture and Society 30 (3): 1771–1800. 10.1086/426800
   Web of Science ®Google Scholar
• McCausland, B., L. Knight, L. Page, and K. Trevillion. 2016. “A Systematic Review of the Prevalence and Odds of Domestic Abuse Victimization among People with Dementia.” International Review of Psychiatry 28 (5): 475–484. 10.1080/09540261.2016.1215296
   PubMed Web of Science ®Google Scholar
• Mental Health Foundation (MHF). 2015. Dementia, Rights, and the Social Model of Disability: A New Direction for Policy and Practice?. London: Mental Health Foundation.
   Google Scholar
• Mental Health Foundation (MHF). 2016. Accessed January 23, 2016. https://www.mentalhealth.org.uk/our-work/mental-health-later-life
   Google Scholar
• Milligan, C. 2003. “Location or Dis-Location: From Community to Long Term Care – The Caring Experience.” Journal of Social and Cultural Geography 4 (4): 455–470. 10.1080/1464936032000137902
   Web of Science ®Google Scholar
• Milligan, C. 2009. There’s No Place like Home: People, Place and Care in an Ageing Society. Aldershot: Ashgate.
   Google Scholar
• Milne, A., and J. Peet. 2008. Challenges & Resolutions to Psycho-Social Well-Being for People in Receipt of a Diagnosis Ofdementia: A Literature Review. London: Mental Health Foundation & Alzheimer’s Society.
   Google Scholar
• Mitchel, D. T., and S. L. Snyder. 2015. The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment. Michigan: The University of Michigan Press. 10.3998/mpub.7331366
   Google Scholar
• Mitchell, L. 2012. “Breaking New Ground: The Quest for Dementia Friendly Communities.” Housing LIN Viewpoint 5. Accessed July 16, 25: www.housinglin.org.uk
   Google Scholar
• Mitchell, L., E. Burton, and S. Raman. 2004. “Dementia‐Friendly Cities: Designing Intelligible Neighbourhoods for Life.” Journal of Urban Design 9 (1): 89–101.10.1080/1357480042000187721
   Google Scholar
• Morris, J. 2001. “Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights.” Hypatia 16 (4): 1–16. 10.1111/j.1527-2001.2001.tb00750.x
   Google Scholar
• MSN. 2016. Mad Studies Network. Accessed April 1, 2016. https://madstudies2014.wordpress.com/
   Google Scholar
• Oliver, M., and C. Barnes. 2012. The New Politics of Disablement. Basingstoke: Palgrave Macmillan. 10.1007/978-0-230-39244-1
   Google Scholar
• Phillipson, C. 2013. Ageing. Cambridge: Polity Press.
   Google Scholar
• Priestley, M. 2003. Disability: A Life Course Approach. Cambridge: Polity Press.
   Google Scholar
• Roberts, C., M. Mort, and C. Milligan. 2012. “‘Calling for Care: ‘Disembodied’ Work, Teleoperators and Older People Living at Home.” Sociology 46 (3): 490–506. http://soc.sagepub.com/content/early/2012/01/25/0038038511422551.full.pdf+html10.1177/0038038511422551
   Google Scholar
• Roulstone, A., and H. Mason-Bish, eds. 2012. Disability, Hate Crime and Violence. London: Routledge.
   Google Scholar
• Roulstone, A., and S. Prideaux. 2012. Understanding Disability Policy. Bristol: The Policy Press. 10.2307/j.ctt1t8939t
   Google Scholar
• Sayce, L. 2016. From Psychiatric Patient to Citizen Revisited. London: Palgrave. 10.1007/978-1-137-36042-7
   Google Scholar
• SDWG/DEEP – Scottish Dementia Working Group. 2015. Accessed May 1, 2015. http://www.sdwg.org.uk/
   Google Scholar
• Shakespeare, T. 2013. Disability Rights and Wrongs Revisited. 2nd ed. London: Routledge.
   Google Scholar
• Shakespeare, T., H. Zeilig, and P. Mittler. 2017. “Rights in Mind: Thinking Differently about Dementia and Disability.” Dementia 1: 1–14. doi:10.1177/147130121770150.
   Google Scholar
• Shildrick, M. 2009. Dangerous Discourses of Disability, Subjectivity and Sexuality. Basingstoke: Palgrave Macmillan. 10.1057/9780230244641
   Google Scholar
• Sobsey, R. 1994. Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance?. Baltimore, MD: Paul H Brookes Publishing.
   Google Scholar
• Solditic, K., and S. Grech. 2014. “Transnationalising Disability Studies: Rights, Justice and Impairment.” Disability Studies Quarterly 34 (2). Accessed June 2016. http://dsq-sds.org/issue/view/114
   Google Scholar
• Spandler, H., J. Anderson, and B. Sapey, eds. 2015. Madness, Distress and the Politics of Disablement. Bristol: Policy Press.
   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. Basingstoke: Palgrave Macmillan. 10.1007/978-1-137-02019-2
   Google Scholar
• Thomas, C. 2015a. “Disability.” In The Routledge International Handbook of Diversity Studies, edited by S. Vertovec. London and New York. Commissioned: Routledge.
   Google Scholar
• Thomas, C. 2015b. “Disability and Gender: Understanding Diversity and Promoting Equality.” NNDR conference, keynote paper, Bergen, Norway, 6-8 May 2015. Accessed May 1, 2016. http://www.cvent.com/events/nndr-13th-research-conference/event-summary-874cd3c94ce04d119a5ad0dcf9122124.aspx
   Google Scholar
• Thomas, C., and C. Milligan. 2015. How Can and Should UK Society Adjust to Dementia? York: Joseph Rowntree Foundation.
   Google Scholar
• Tremain, S. 2005. Foucault and the Government of Disability. Michigan: The University of Michigan Press. 10.3998/mpub.12678
   Google Scholar
• Turner, D. M., and K. Stagg, eds. 2013. Social Histories of Disability and Deformity. London: Routledge.
   Google Scholar
• Twigg, J., and W. Martin. 2015. “The Challenge of Cultural Gerontology.” The Gerontologist 55 (3): 353–359. 10.1093/geront/gnu061
   PubMed Web of Science ®Google Scholar
• UNCRPD. 2006. United Nations Convention on the Rights of People with Disabilities. Accessed April 6, 2012. www.un.org/disabilities/default.asp?navid=14&pid=150
   Google Scholar
• Union of the Physically Impaired Against Segregation (UPIAS). 1976. Fundamental Principles of Disability. London: UPIAS.
   Google Scholar
• Walby, S., J. Armstrong, and S. Strid. 2012. “Intersectionality: Multiple Inequalities in Social Theory.” Sociology 46 (2): 224–240. 10.1177/0038038511416164
   Google Scholar
• Walker, A. 1980. “The Social Construction of Poverty and Dependency in Old Age.” Journal of Social Policy 9: 49–75. 10.1017/S0047279400009545
   Web of Science ®Google Scholar
• Watkins, R., R. Cheston, K. Jones, and J. Gilliard. 2006) “‘Coming Out’ with Alzheimer’s Disease: Changes in Awareness during a Psychotherapy Group for People with Dementia.” Aging & Mental Health 10(2): 166–176. 10.1080/13607860500312209
   PubMed Web of Science ®Google Scholar
• Watson, N., A. Roulestone, and C. Thomas, eds. 2012. Routledge Handbook of Disability Studies. London: Routledge.
   Google Scholar
• WHO. 2016a. World Health Statistics, 2015. Accessed March 31, 2016. http://apps.who.int/iris/bitstream/10665/170250/1/9789240694439_eng.pdf?ua=1&ua=1
   Google Scholar
• WHO. 2016b. “First WHO Ministerial Conference on Global Action against Dementia: Meeting Report.” WHO Headquarters, Geneva, Switzerland, 16-17 March 2015.
   Google Scholar
• WHO. 2016c. Fact Sheet N°362. Accessed January 23, 2016. http://www.who.int/mediacentre/factsheets/fs362/en/
   Google Scholar
• WHO and Alzheimer’s Disease International. 2012. Dementia: A Public Health Priority. Geneva: World Health Organization.
   Google Scholar
• Williams, V., and P. Heslop. 2005. “Mental Health Support Needs of People with a Learning Difficulty: A Medical or a Social Model?” Disability & Society 20 (3): 231–245. 10.1080/09687590500060554
   Web of Science ®Google Scholar
• Zarb, G., and M. Oliver. 1993. Ageing with a Disability. London: Sage Publications.
   Google Scholar