Abstract
This chapter outlines the connections between dementia, social disadvantage, and social exclusion. It draws on original research to discuss the conceptual and practical implications of applying a social inclusion lens to the issue of dementia. The authors argue that social inclusion-exclusion is an active process arising from the social experience of dementia, although it also interacts with demographic characteristics, and that the effects of dementia need to be understood as an interpersonal and interactive process. As exclusion itself is a compromised position, it raises the question of inclusion into what sort of society. It nevertheless has face validity with many of the carers and people living with dementia in the studies covered here.
Drawing on a selection of research, alongside the policy and practice implications, it addresses both the benefits and challenges of conducting research with people living with dementia as well as their families, friends, supporters, and carers. It shows ways to counter social exclusion and promote the continued participation of people with dementia in daily life, decision-making, and a political voice.
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References
Alzheimer’s Association. (2019). Alzheimer’s disease facts and figures. Alzheimers & Dementia, 15(3), 321–387.
Australian Institute of Health and Welfare. (2012). Dementia in Australia. Canberra: The Institute. https://www.aihw.gov.au. Accessed 21 Jan 2021.
Bailey, S., Scales, K., Lloyd, J., et al. (2015). The emotional labour of health-care assistants in inpatient dementia care. Ageing and Society, 35(2), 246–269.
Ballenger, J. F. (2006). Self, senility, and Alzheimer’s disease in modern America: A history. Baltimore: John Hopkins University Press.
Bartlett, R. (2003). Meanings of social exclusion and inclusion in relation to older people with Dementia in care homes (Ph.D. thesis, Oxford Brookes University, Oxford). Cited in Pinkert et al (2019).
Bartlett, R., & O'Connor, D. (2007). From personhood to citizenship: Broadening the lens for dementia practice and research. Journal of Aging Studies, 21, 107–118.
Basta, N. E., Matthews, F. E., Chatfield, M. D., et al. (2008). Community-level socio-economic status and cognitive and functional impairment in the older population. European Journal of Public Health, 18, 48–54.
Behuniak, S. (2011). The living dead? The construction of people with Alzheimer’s disease as zombies. Ageing and Society, 31, 70–92.
Biggs, S. (2018). Negotiating ageing: Cultural adaptation to the prospect of a long life. London: Routledge.
Biggs, S., & Lowenstein, A. (2011). Generational intelligence: A critical approach to age relations. New York: Routledge.
Biggs, S., Haapala, I., & Carr, A. (2018). Generational perceptions of dementia: Age, othering and generational intelligence. In G. Macdonald & J. Mears (Eds.), Dementia as social experience. Valuing life and care. New York: Routledge.
Biggs, S., Carr, A., & Haapala, I. (2019). Dementia as a source of social disadvantage. Australasian Journal on Ageing, 38(Suppl. 2), 26–33.
Carr, A., & Biggs, S. (2020). The distribution of regulation in aged and dementia care: A continuum approach. Journal of Aging & Social Policy, 32(3), 220–241.
Cheston, R., Hancock, J., & White, P. (2016). A cross-sectional investigation of public attitudes toward dementia in Bristol and South Gloucestershire using the approaches to dementia questionnaire. International Psychogeriatrics, 28(10), 1717–1724.
Ervin, K., Pallant, J., Terry, D. F., et al. (2015). A descriptive study of health, lifestyle and sociodemographic characteristics and their relationship to known dementia risk factors in rural Victorian communities. AIMS Medical Science, 2, 246–260.
Forbes, D., Ward-Griffin, C., Kloseck, M., et al. (2011). ‘Her world gets smaller and smaller with nothing to look forward to’: Dimensions of social inclusion and exclusion among rural dementia care networks. Online Journal of Rural Nursing & Health Care, 11, 27–42.
Goffman, I. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster.
Haapala, I., Carr, A., & Biggs, S. (2018). What would I want? Dementia perspectives and priorities amongst people with dementia, family carers and service professionals? International Journal of Care and Caring, 3(1), 39–57.
Hannigan, B. (1999). Mental health care in the community: An analysis of contemporary public attitudes towards and public representations of mental illness. Journal of Mental Health, 8(5), 431–440.
Heap, J., Lennarston, C., & Thorslund, M. (2013). Coexisting disadvantages across the adult age span: A comparison of older and younger age groups in the Swedish welfare state. International Journal of Social Welfare, 22(2), 130–140.
Hulko, W. (2004). Social science perspectives on dementia research: Inter-sectionality. In A. Innes, C. Archibald, & C. Murphy (Eds.), Dementia and social inclusion: Marginalised groups and marginalised areas of dementia research, care and practice (pp. 237–254). London: Jessica Kingsley.
Hulko, W. (2009). From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia. Journal of Aging Studies, 23(3), 131–144.
Jones, I. R. (2017). Social class, dementia and the fourth age. Sociology of Health & Illness, 39, 303–317.
Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.
Macdonald, G. (2019). Why ‘person-centred’ care is not enough a relational approach to dementia. In G. Macdonald & J. Mears (Eds.), Dementia as social experience. New York: Routledge.
Matthews, F. E., Stephen, B. C. M., Robinson, L., et al. (2016). A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies I and II. Nature Communications, 7. https://doi.org/10/1038/ncomms11398.
Miron, A. M., McFadden, S. H., Hermus, N. J., et al. (2017). Contact and perspective taking improve humanness standards and perceptions of humanness of older adults and people with dementia: A cross-sectional survey study. International Psychogeriatrics, 29, 1701–1711.
Morgan, C., Burns, T., Fitzpatrick, R., Pinfold, V., & Priebe, S. (2007). Social exclusion and mental health: conceptual and methodological review. The British Journal of Psychiatry, 191(6), 477–483.
Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024–1026. https://doi.org/10.1080/09687599.2013.818773.
Phillipson, L., Magee, D. C., Jones, S., Skladzien, D. E., & Cridland, E. (2012). Exploring dementia and stigma beliefs. Canberra: Alzheimer’s Australia.
Phillipson, L., Hall, D., Cridland, E., et al. (2018). Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project. Dementia, 1–16. https://doi.org/10.1177/1471301218754455.
Pinkert, C., Kohler, K., von Kutlzeben, M., et al. (2019). Social inclusion of people with dementia – An integrative review of theoretical frameworks, methods and findings in empirical studies. Ageing and Society, 1–21. https://doi.org/10.1017/S0144686X19001338.
Prince, M. (2017). Progress on dementia – Leaving no one behind. The Lancet, 390(10113), e51–e53.
Prince, M., Wimo, A., Guerchet, M., Ali, G. C., Wu, Y. T., & Prina, M. (2015). World Alzheimer Report 2015, The Global Impact of Dementia: An Analysis of Prevalence, Incidence, Cost and Trends. London: Alzheimer’s Disease International. www.alzint.org. Accessed 21 January 2021.
Smyth, P. (2010). In The Australian Collaboration (Ed.), In or out? Building an inclusive nation.
Smyth, P., & Buchanan, J. (2013). Inclusive growth in Australia: Social policy as economic investment. London: Routledge.
Strand, B. H., Skirbekk, V., Rosness, T. A., et al. (2015). Income in midlife and dementia related mortality over three decades: A Norwegian prospective study. eNeurologicalSci, 1, 24–29.
Swaffer, K. (2014). Dementia: Stigma, language, and dementia-friendly. Dementia, 13, 709–716.
Swaffer, K. (2015). Dementia and prescribed disengagement. London: Sage Publications.
Vinson, T., Rawsthorne, M., Beavis, A., & Ericson, M. (2015). Dropping off the edge 2015. Melbourne: Jesuit Social Services and Catholic Services Australia. www.dote.org.au. Accessed 21 January 2021.
Walsh, K., Scharf, T., & Keating, N. (2017). Social exclusion of older persons: A scoping review and conceptual framework. European Journal of Ageing, 14, 81–98.
Winblad, B., Amouyel, P., Andrieu, S., et al. (2016). Defeating Alzheimer’s disease and other dementias: A priority for European science and society. Lancet Neurology, 15, 455–532.
World Health Organization. (2020). Global dementia observatory https://apps.who.int/gho/data/node.dementia. Accessed 21 Jan 2021.
Wright, R. S., Waldstein, S. R., Kuczmarski, M. F., et al. (2016). Diet quality and cognitive function in an urban sample: Findings from the healthy aging in neighborhoods of diversity across the life span (HANDLS) study. Public Health Nutrition, 20, 92–101.
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Carr, A., Biggs, S., Haapala, I. (2021). Dementia and Social Inclusion-Exclusion. In: Liamputtong, P. (eds) Handbook of Social Inclusion. Springer, Cham. https://doi.org/10.1007/978-3-030-48277-0_37-1
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DOI: https://doi.org/10.1007/978-3-030-48277-0_37-1
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