Hostname: page-component-78c5997874-4rdpn Total loading time: 0 Render date: 2024-11-05T05:45:43.278Z Has data issue: false hasContentIssue false
  • English
  • Français

New analytical tools and frameworks to understand dementia: what can a human rights lens offer?

Published online by Cambridge University Press:  18 December 2020

Suzanne Cahill Open the ORCID record for Suzanne Cahill [Opens in a new window]
Suzanne Cahill*
Affiliation:
School of Social Work and Social Policy, Trinity College Dublin, Ireland The Centre for Economic and Social Research on Dementia, National University of Ireland, Galway, Ireland School of Health and Welfare, Jönköping University, Sweden
*
*Corresponding author. Email: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

The biomedical model has traditionally informed the dominant discourse on dementia and has significantly shaped practitioners’, policy makers’ and researchers’ responses. This model contextualises dementia as a progressive neuro-degenerative cognitive disorder and focuses on deficits and underlying pathology, often overlooking the fact that the person can and should be an active partner in the treatment process. Beginning in the late 1990s, the exclusive reliance on the bio-medical model has come under increasing scrutiny with a growing awareness that by recasting dementia in broader social and more humanitarian terms, much can be done to promote the individual's quality of life. Different frameworks and analytical tools have been forwarded to help us better understand dementia. These include personhood, citizenship, public health, disability and human rights. This review examines the merits of framing dementia as a disability, a citizenship concern and a human rights issue. It highlights some of the potential gains that can arise for the individual in using a human rights model to enhance practice, inform policy and create a more balanced research agenda. The article concludes by arguing that the complexities and magnitude of dementia are such that it requires multiple responses and a broad range of interpretative frameworks.

Keywords

disabilityhuman rightspracticepolicyresearchcitizenship
Type
Forum Article
Information
Ageing & Society , Volume 42 , Issue 7 , July 2022 , pp. 1489 - 1498
Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer Europe (2016) Discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer's disease. Alzheimer Europe, Luxembourg.Google Scholar
Argyle, E, Dening, T and Bartlett, P (2016) Space, the final frontier: outdoor access for people living with dementia. Aging and Mental Health 21, 1005–1006.CrossRefGoogle ScholarPubMed
Bartlett, R (2000) Dementia as a disability: can we learn from disability studies and theory? Journal of Dementia Care 8, 33–36.Google Scholar
Bartlett, R (2014) Citizenship in action: the lived experiences of citizens with dementia who campaign for social change. Disability & Society 29, 1291–1304.CrossRefGoogle Scholar
Bartlett, R and O'Connor, D (2007) From personhood to citizenship: broadening the lens for dementia practice and research. Journal of Ageing Studies 21, 107–118.CrossRefGoogle Scholar
Bartlett, R and O'Connor, D (2010) Broadening the Dementia Debate: Towards Social Citizenship. Bristol, UK: Policy Press.CrossRefGoogle Scholar
British Institute of Human Rights (2010) Your Human Rights: A Guide for Older People. London: British Institute of Human Rights.Google Scholar
Brooker, D, Fontaine, J, Evans, S, Bray, J and Saad, K (2014) Public health guidance to facilitate timely diagnosis of dementia: Alzheimer's Cooperative Valuation in Europe recommendations. International Journal of Geriatric Psychiatry 29, 682–693.CrossRefGoogle ScholarPubMed
Cahill, S (2018) Dementia and Human Rights. Bristol, UK: Policy Press.Google Scholar
Deal, M (2003) Disabled people's attitudes toward other impairment groups: a hierarchy of impairments. Disability & Society 18, 897–910.CrossRefGoogle Scholar
Degener, T (2014) A human rights model of disability. Disability Social Rights. Available at https://www.researchgate.net/publication/283713863_A_human_rights_model_of_disability.Google Scholar
Gilliard, J, Means, R, Beattie, A and Daker-White, G (2005) Dementia care in England and the social model for disability – lessons and issues. Dementia 4, 571–586.CrossRefGoogle Scholar
Goodley, D (2011) Disability Studies: An Interdisciplinary Introduction. London: Sage.Google Scholar
Jefferies, K and Agrawal, N (2009) Early-onset dementia. Advances in Psychiatric Treatment 15, 380–388.CrossRefGoogle Scholar
Kelly, F and Innes, A (2012) Human rights, citizenship and dementia care nursing. International Journal of Older People Nursing 8, 61–70.Google ScholarPubMed
Kivipelto, M, Solomon, A, Ahtiluoto, S, Ngandu, T, Lehtisalo, J, Antikainen, R, Bäckman, L, Hänninen, T, Jula, A, Laatikainen, T and Lindström, J (2013) The Finnish geriatric intervention study to prevent cognitive impairment and disability (FINGER): study design and progress. Alzheimer's & Dementia 9, 657–665.CrossRefGoogle ScholarPubMed
Kontos, P, Miller, KL and Kontos, AP (2017) Relational citizenship: supporting embodied selfhood and relationality in dementia care. Sociology of Health & Illness 39, 182–198.CrossRefGoogle ScholarPubMed
Luengo-Fernandez, R and Gray, A (2010) Dementia 2010: The Prevalence, Economic Cost and Research Funding of Dementia Compared with Other Major Diseases. Oxford: Health Economics Research Centre, University of Oxford.Google Scholar
Luengo-Fernandez, R, Leal, J and Gray, AM (2012) UK research expenditure on dementia, heart disease, stroke and cancer: are levels of spending related to disease burden? European Journal of Neurology 19, 149–154.CrossRefGoogle ScholarPubMed
Marshall, TH (1949/92) Citizenship and social class. In Marshall, TH and Bottomore, T (eds.), Citzenship and social class. London, UK: Pluto Press, pp. 3–51. [Google Scholar]Google Scholar
McKillop, J and Kelly, F (2019) A social citizenship lens to describe one person's experience of living with dementia in Scotland. In Nedlund, A-C, Bartlett, R and Clarke, CL (eds), Everyday Citizenship and People with Dementia. Edinburgh: Dunedin Academic Press, pp. 22–30.Google Scholar
Mental Health Foundation (2015) Dementia Rights and the Social Model of Disability: A New Direction for Policy and Practice. London: Mental Health Foundation.Google Scholar
Mittler, P (2016) The United Nations Convention on the Rights of Persons with Disabilities: what does it have to offer people with dementia? Paper presented at the Health Policy Plenary, Annual Conference, Alzheimer's Disease International, Budapest, April.Google Scholar
Nedlund, A-C, Bartlett, R and Clarke, CL (eds) (2019) Everyday Citizenship and People with Dementia. Edinburgh: Dunedin Academic Press.Google Scholar
Oliver, M (1983) Social Work with Disabled People. Basingstoke, UK: Macmillan.CrossRefGoogle Scholar
Oliver, M (1996) Understanding Disability: From Theory to Practice. New York, NY: St Martin's Press.CrossRefGoogle Scholar
Organisation for Economic Co-operation and Development (OECD) (2015) Addressing Dementia: The OECD Response. Paris: OECD Publishing.Google Scholar
Pot, AM and Petrea, I (2013) Improving Dementia Care Worldwide: Ideas and Advice on Developing and Implementing a National Dementia Plan. London: Bupa/Alzheimer's Disease International. Available at https://www.alz.co.uk/sites/default/files/pdfs/global-dementia-plan-report-ENGLISH.pdf.Google Scholar
Prince, M (2015) Addressing geriatric mental health needs in low income countries. Paper presented at the Inaugural Global Brain Health Institute Conference, Havana, December.Google Scholar
Rees, G (2017) Global action on dementia. Australian Journal of Dementia Care 6, 7–9.Google Scholar
Sabat, S (1994) Excess disability and malignant social psychology: a case study of Alzheimer's disease. Journal of Community & Applied Social Psychology 4, 157–166.CrossRefGoogle Scholar
Sabatello, M and Schulze, M (2014) Human Rights and Disability Advocacy. Philadelphia, PA: University of Pennsylvania Press.CrossRefGoogle Scholar
Scottish Government (2010) Scotland's National Dementia Strategy (2010–2016). Edinburgh: Scottish Government.Google Scholar
Scottish Government (2013) Scotland's National Dementia Strategy (2013–2016). Edinburgh: Scottish Government. Available at https://www2.gov.scot/Resource/0042/00423472.pdf.Google Scholar
Scottish Government (2017) Scotland's National Dementia Strategy (2017–2020). Edinburgh: Scottish Government. Available at https://www2.gov.scot/Resource/0052/00521773.pdf.Google Scholar
Scottish Human Rights Commission (SHRC) (2010) Care About Rights: Human Rights and the Care of Older People (Information pack). Glasgow, UK: SHRC.Google Scholar
Scottish Parliament's Cross-Party Group on Alzheimer's (SPCPGOA) (2009) Charter of Rights for People with Dementia and Their Carers in Scotland. Available at https://social.un.org/ageing-working-group/documents/Alzheimer%20Scotland%202.pdf.Google Scholar
Seetharaman, K and Chaudhury, H (2020) ‘I am making a difference’: understanding advocacy as a citizenship practice among persons living with dementia. Journal of Aging Studies 52, 100831.CrossRefGoogle ScholarPubMed
Shakespeare, T, Zeilig, H and Mittler, P (2017) Rights in mind: thinking differently about dementia and disability. Dementia 18, 1075–1088.Google ScholarPubMed
Solé-Padullés, C, Bartrés-Faz, D, Junqué, C, Vendrell, P, Rami, L, Clemente, I, Bosch, B, Villar, A, Bargalló, N, Jurado, MA and Barrios, M (2009) Brain structure and function related to cognitive reserve variables in normal aging, mild cognitive impairment and Alzheimer's disease. Neurobiology of Aging 30, 1114–1124.CrossRefGoogle ScholarPubMed
Swaffer, K (2015) Dementia and prescribed disengagement. International Journal of Social Research and Practice 14, 3–6.Google Scholar
Union of the Physically Impaired Against Segregation (1976) Fundamental Principles of Disability. Available at http://disability-studies.leeds.ac.uk/files/library/UPIAS-fundamental-principles.pdf.Google Scholar
United Nations (2006) UN's Convention on the Rights of People with Disabilities (CPRD). Available at https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html.Google Scholar
World Health Organization (WHO) (2017) Global Action Plan on the Public Health Response to Dementia 2017–2025. Geneva: WHO.Google Scholar
Wu, YT, Fratiglioni, L, Matthews, F, Lobo, A, Breteler, M, Skoog, I and Brayne, C (2016) Dementia in Western Europe: epidemiological evidence and implications for policy making. Lancet Neurology 15, 116–124.CrossRefGoogle ScholarPubMed