“Nothing About Us Without Us”: Involving People with Dementia in Qualitative Research

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Margaret Oldfield


dementia, disability, research participants


People with dementia are increasingly asserting their rights as people with disabilities. Yet instead of inviting these people as participants, researchers of dementia often use surrogates—family members or healthcare professionals. I address this problem by bringing together qualitative methodologies that involve people with dementia directly in research. 

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Bourbonnais, A., & Ducharme, F. (2010). The meaning of screams in older people living with dementia in a nursing home. International Psychogeriatrics, 22(7), 1172–1186. https://doi.org/10.1016/j.apnu.2015.06.004
Carpiano, R. M. (2009, March). Come take a walk with me: The “Go-Along” interview as a novel method for studying the implications of place for health and well-being. Health and Place, 15(1), 263–272. https://doi.org/10.1016/j.healthplace.2008.05.003
Crowther, N. (2016). Harnessing the United Nations Convention on the Rights of Persons with Disabilities to improve the lives of persons with dementia. Ankeny, IA: Dementia Alliance International. Retrieved Jan. 26, 2021 from https://www.dementiaallianceinternational.org/wp-content/uploads/2016/04/Disability-Rights-for-persons-with-dementia_DAI-ADI-position-paper.pdf
Dassah, E., Aldersey, H. M., & Norman, K. (2017). Photovoice and persons with physical disabilities: A scoping review. Qualitative Health Research, 27(9), 1412–1422. https://doi.org/10.1177/1049732316687731
Dickson-Swift, V., James, E., Kippen, S., & Liamputtong, P. (2008). Risks to researchers in qualitative research on sensitive topics: Issues and strategies. Qualitative Health Research, 19(1), 133–144. https://doi.org/10.1177/1049732316687731
Oldfield, M. (2019). “You have to wait!” Time as an instrument of power in a nursing home [oral presentation]. Canadian Gerontological Nurses Association conference, Calgary, May 4. https://www.researchgate.net/profile/Margaret-Oldfield/research
Oldfield, M. (in progress). “You have to wait!” Time as an instrument of power in a nursing home [draft]. https://www.researchgate.net/profile/Margaret-Oldfield/research
Oldfield, M. & Hansen, N. (2020). Travels with two women: A reflection on power and agency while aging with and into cognitive impairment. In K. Aubrecht, C. Kelly, & C. Rice (Eds.), The aging/disability nexus (pp. 130–144). University of British Columbia Press. https://www.researchgate.net/profile/Margaret-Oldfield/research
Gewurtz, R., Tompa, E., Oldfield, M, Lahey, P., Irvin, E., Samosh, D., Padkapayeva, K., & Johnston, H. (2019). Financial incentives to promote employment of people with disabilities: When and how do they work best? Report prepared for Ontario Human Capital Research Innovation Fund, Ontario Ministry of Training, Colleges and Universities. Toronto: Institute for Work & Health. https://www.researchgate.net/profile/Margaret-Oldfield/research
Heggestad, A. K. T., Nortvedt, P., & Slettebø, Å. (2013). ‘Like a prison without bars’: Dementia and experiences of dignity. Nursing Ethics, 20(8), 881–892. https://doi.org/10.1177/0969733013484484
Heggestad, A. K. T., Nortvedt, P., & Slettebø, Å. (2012). The importance of moral sensitivity when including persons with dementia in qualitative research. Nursing Ethics, 20(1), 30–40. https://doi.org/10.1177/0969733012455564
Pesonen, H. M., Remes, A. M., & Isola, A. (2011). Ethical aspects of researching subjective experiences in early-stage dementia. Nursing Ethics, 18(5), 651–661. https://doi.org/10.1177/0969733011408046
Moore, T. F., & Hollett, Jane. (2003). Giving voice to persons living with dementia: The researcher’s opportunities and challenges. Nursing Science Quarterly, 16(2), 163–167. https://doi.org/10.1177/0894318403251793251793
Novek, S., & Wilkinson, H. (2019). Safe and inclusive research practices for qualitative research involving people with dementia: A review of key issues and strategies. Dementia, 18(3), 1042–1059. https://doi.org/10.1177/1471301217701274
Nygärd, L. (2006). How can we get access to the experiences of people with dementia? Suggestions and reflections. Scandinavian Journal of Occupational Therapy, 13(2), 101–112. https://doi.org/10.1080/11038120600723190
Ross, C., Rogers, C., & Duff, D. (2016). Critical ethnography: An under-used research methodology in neuroscience nursing. Canadian Journal of Neuroscience Nursing, 38(1), 4–7.
Scottish Dementia Working Group. Research Sub-Group, UK. (2014). Core principles for involving people with dementia in research: Innovative practice. Dementia, 13(5), 680–685. https://doi.org/10.1177/1471301214533255
Shakespeare, T., Zeilig, H., & Mittler, P. (2017). Rights in mind: Thinking differently about dementia and disability. Dementia 18(3), 1–14. https://doi.org/10.1177/1471301217701506
Steele, L., Swaffer, K., Carr, R., Phillipson, L., & Fleming, R. (2020, June 25). Ending confinement and segregation: Barriers to realising human rights in the everyday lives of people living with dementia in residential aged care. Australian Journal of Human Rights [online]. https://doi.org/10.1080/1323238X.2020.1773671
Teachman, G., Mistry, B., & Gibson, B. E. (2014). Doing qualitative research with people who have communication impairments. In SAGE research methods cases [online]. SAGE. https://dx.doi.org/10.4135/978144627305013514660
Van Gorp, B., & Vercruysse, T. (2012). Frames and counter-frames giving meaning to dementia: A framing analysis. Social Science & Medicine, 74(8), 1274–1281. https://doi.org/10.1016/j.socscimed.2011.12.045
Walker, J. (2013). The United Nations Convention on the Rights of Persons with Disabilities: An overview [Publication No. 2013-09-E]. Ottawa: Library of Parliament.
Williams, V. (2011). Disability and discourse: Analysing inclusive conversation with people with intellectual disabilities. Wiley-Blackwell.
Williams, V., & Porter, S. (2015). “The meaning of ‘choice and control’ for people with intellectual disabilities who are planning their social care and support.” Journal of Applied Research in Intellectual Disabilities, 30(1), 1–12. https://doi.org/10.1111/jar.12222
Yoshizaki-Gibbons, H. (2020). Old women and care workers navigating time, relationality, and power in dementia units. Unpublished doctoral dissertation, University of Illinois at Chicago, Chicago, IL.
Zeilig, H. (2015, March 9). What do we mean when we talk about dementia? Exploring cultural representations of ‘dementia.’ Working with Older People, 19(1), 12–20. http://doi.org/10.1108/WWOP-10-2014-0032