Abstract
The Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research is grounded in the view that impactful health research is born out of research processes that include the voices of patients with lived experience. This current landscape reflects an international cultural shift wherein patients are increasingly participating in health research as advisors, partners, collaborators, and/or co-researchers engaged in all phases of the work, from developing research agendas to disseminating results. In the context of dementia research, patient engagement is especially critical as persons living with dementia have been systematically excluded from having a meaningful role in medical and social science research. Despite the potential benefits of engagement with those with lived experience, there are challenges unique to dementia research that cross-cut ethical and methodological domains. These challenges include soliciting informed and ongoing consent from individuals themselves rather than defaulting to proxy consent along the dementia trajectory; balancing opportunities for engagement with paternalistic requirements from research ethics boards; including informal caregivers’ perspectives whilst promoting individual agency of the person with dementia; and developing person-centred methods that accentuate the individual’s capabilities when communication may be impeded. In this chapter three guiding principles grounded in relational ethics and social citizenship will be presented that promote the centring of individuals living with dementia as patient-partners in research: 1) tackling unconscious bias; 2) moving beyond tokenistic participation; and 3) embracing a strengths-based paradigm. These principles will be illustrated with empirical data from the qualitative arts-based CIHR project ‘Living well with dementia to the end of life’ to illustrate these principles and provide concrete and practical examples of meaningful and respectful inclusion of people living with dementia in research.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Notes
- 1.
This research is funded by the Canadian Institutes for Health Research (CIHR). Dr. Puurveen is supported by the Alzheimer Society of Canada postdoctoral award and the Michael Smith Foundation for Health Research trainee award.
- 2.
We employed purposive and snowball sampling to recruit participants. We gave presentations and distributed study information through community-based partners such as: the Alzheimer’s Society of B.C., Burnaby Senior Services, Neighbourhood Houses, Alzheimer’s/Dementia Cafes, and other community senior centres.
- 3.
The issue of adequate funding from competitive sources is important to consider. We recognize the different cultures that operate in various peer review committees and how this impacts whether research projects that aim to be more participatory will be funded. While this issue is beyond the scope of the chapter, we refer the reader to the mindmap (Fig. 5.1) that illustrates this as an intersecting macro-issue.
- 4.
In an analysis of eleven different research ethics policies, Bracken-Roche et al. (2017) found only three out of the eleven policies defined vulnerability; the TCPS2 (2014 edition) being one of the policies. Since Bracken-Roche and colleagues’ (2017) analysis, the TCPS2 has been updated. The TCPS2 (2018) defines vulnerability as “a diminished ability to fully safeguard one’s own interests in the context of a specific research project. This may be caused by limited decision-making capacity or limited access to social goods, such as rights, opportunities and power. Individuals or groups may experience vulnerability to different degrees and at different times, depending on their circumstances” (p 202).
- 5.
We also refer readers to Jennifer Johannesen’s blogpost about her experience of writing an invited essay in the British Medical Journal, from her perspective as a patient (https://johannesen.ca/2018/01/the-time-i-didnt-get-published-in-the-bmj/).
- 6.
The virtual art exhibition is titled “Out Here, In There: Art making Space for Living Well with Dementia” and can be found online at: https://www.artmakingspace.com/.
References
Alzheimer Society of British Columbia. 2018. Strategies for engaging people with dementia in research. In Pre-conference Workshop, Canadian Association on Gerontology Annual Scientific Meeting, Vancouver, BC.
Ayalon, L., Y.G. Bachner, T. Dwolatzky, J. Heinik. 2012. Preferences for end-of-life treatment. Concordance between older adults with dementia or mild cognitive impairment and their spouses. International Psychogeriatrics 24 (11): 1798–1804. https://doi.org/10.1017/S1041610212000877
Bartlett, R., and D. O’Connor. 2010. Broadening the dementia debate: Towards social citizenship, 151. Bristol, England: The Policy Press.
Beattie, E., M. O’Reilly, D. Fetherstonhaugh, M. McMaster, W. Moyle, and E. Fielding. 2019. Supporting autonomy of nursing home residents with dementia in the informed consent process. Dementia 13 (7–8): 2821–2835. https://doi.org/10.1177/1471301218761240.
Behuniak, S. 2011. The living dead? The construction of people with Alzheimer’s disease as zombies. Ageing and Society 31: 70–92. https://doi.org/10.1017/S0144686X10000693.
Benbow, S.M., and D. Jolley. 2012. Dementia: Stigma and its effects. Neurodegenerative Disease Management 2 (2). [Published online] April 16, 2012. https://doi.org/10.2217/nmt.12.7
Bracken-Roche, D., E. Bell, M.E. Macdonald, and E. Racine. 2017. The concept of ‘vulnerability’ in research ethics: An in-depth analysis of policies and guidelines. Health Research Policy and System 15 (8). [Published online] February 07, 2017. https://doi.org/10.1185/s12961-016-0164-6
Brookes, G., K. Harvey, N. Chadborn, and T. Dening. 2018. “Our biggest killer”: Multimodal discourse representations of dementia in the British press. Social Semiotics 28 (3): 371–395. https://doi.org/10.1080/10350330.2017.1345111.
Brooke, J. 2019. Equity of people with dementia in research. Why does this issue remain? Journal of Clinical Nursing, 28: 3723–3724. https://doi.org/10.1111/jocn.14957
Canadian Institutes of Health Research (CIHR). 2015. Guide to knowledge translation planning at CIHR: Integrated and end-of-grant approaches. Retrieved from: https://cihr-irsc.gc.ca/e/45321.html
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. 2018. Tri-council policy statement: Ethical conduct for research involving humans. Retrieved on 12/08/2015 from: http://www.pre.ethics.gc.ca/pdf/eng/tcps2-2014/TCPS_2_FINAL_Web.pdf
Charlesworth, G. 2018. Public and patient involvement in dementia research: Time to reflect? Dementia 17 (8): 1064–1067. https://doi.org/10.1177/2397172X18802501.
Cowden, S., and G. Singh. 2007. The ‘User’: Friend, foe or fetish? A critical exploration of user involvement in health and social care. Critical Social Policy 27: 5–23. https://doi.org/10.1177/0261018307072205.
Cox, S.M., and M. McDonald. 2013. Ethics is for human subjects too: Participant perspectives on responsibility in health research. Social Science & Medicine 98: 224–231. https://doi.org/10.1016/j.socscimed.2013.09.015.
Cox, S.M., K. Ross, A. Townsend, and R. Woodgate. 2011. From stakeholders to shareholders: Consumer collaborators in health research. Health Law Review 19 (3): 63–71.
Cox, S.M., S., Drew, M., Guillemin, C., Howell, D. Warr, and J. Waycott. 2014. Guidelines for ethical visual research methods. Melbourne: The University of Melbourne. ISBN 987-0-7340-4907-0
Cox, S.M., G. Puurveen, and M. Norman. 2019. Imbrication: (Re)imagining conversations on memory and loss. Paper Presentation, 6th Poetic Inquiry. Halifax, Nova Scotia.
Dening, K.H., L. Jones, and E.L. Sampson. 2012. Preferences for end-of-life care: A nominal group study of people with dementia and their family carers. Palliative Medicine 27 (5): 409–417. https://doi.org/10.1177/0269216312464094.
Dewing, J. (2007). Participatory research: A method for process consent with persons who have dementia. Dementia: The International Journal of Social Research and Practice 6, 11–25. https://doi.org/10.1177/1471301207075625
Dupuis, S.L., E. Wiersma, and L. Loiselle. 2011. Pathologizing behavior: Meanings of behaviors in dementia care. Journal of Aging Studies 26 (2): 162–173. https://doi.org/10.1016/j.jaging.2011.12.001
Ells, C., M.R. Hunt, and J. Chambers-Evans. 2011. Relational autonomy as an essential component of patient centered care. International Journal of Feminist Approaches to Bioethics 4 (2): 79–101. https://doi.org/10.3138/ijfab.4.2.79.
Flyvberg, B. 2001. Making social science matter: Why social inquiry fails and how it can succeed again. Cambridge: Cambridge University Press.
Gerritsen, D.L., J. Oyebode, and D. Gove. 2018. Ethical implications of the perception and portrayal of dementia. Dementia 17 (5): 596–608. https://doi.org/10.1177/1471301216654136.
Goffman, E. 1963. Stigma: Notes on the management of spoiled identity. New Jersey: Prentice Hall.
Grenier, A. 2020. Rereading frailty through a lens of precarity: An explication of politics and the human condition of vulnerability. In Precarity and ageing: Understanding insecurity and risk in later life, ed. A. Grenier, C. Philipson, and R.A. Settersten, 69–90. Bristol, UK: Bristol University Press.
Katz, A.S., B.J. Hardy, M. Firestone, A. Lofters, and M.E. Morton-Ninomiya. 2019. Vagueness, power and public health: Use of ‘vulnerable’ in public health literature. Critical Public Health. https://doi.org/10.1080/09581596.2019.1656800
Keady, J., L.C. Hydén, A. Johnson, and C. Swarbrick, eds. 2018. Social research methods in dementia studies: Inclusion and innovation. Oxon, UK: Routledge.
Kim, S.Y.H. 2011. The ethics of informed consent in Alzheimer disease research. Nature Reviews Neurology 7: 410–414. https://doi.org/10.1038/nrneurol.2011.76.
Koch, T., S. Iliffe, and E.E. Project. 2010. Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: A systematic review. BMC Family Practice 11, 52. https://doi.org/10.1186/1471-2296-11-52
Kong, C. M. Efrem, and M. Campbell. 2020. Education versus screening: The use of capacity to consent tools in psychiatric genomics. Journal of Medical Ethics 46, 137–143. https://doi.org/10.1136/medethics-2019-105396
Link, B., and J. Phelan. 2001. Conceptualizing stigma. Annual Review of Sociology 27: 363–385.
Luna, F. 2009. Elucidating the concept of vulnerability: Layers not labels. International Journal of Feminist Approaches to Bioethics 2: 121–139. https://doi.org/10.3138/ijfab.2.1.121.
Mann, J., and L. Hung. 2019. Co-research with people living with dementia for change. Action Research 17 (4): 573–590. https://doi.org/10.1177/146750318787005.
Mattsson, T., and L. Giertz. 2020. Vulnerability, law, and dementia: An interdisciplinary discussion of legislation and practices. Theoretical Inquiries in Law 21 (1): 139–159. [Published online] February 26, 2020. https://doi.org/10.1515/til-2020-0007
Miah, J., P. Dawes, S. Edwards, I. Leroi, B. Starling, and S. Parsons. 2019. Patient and public involvement in dementia research in the European Union: A scoping review. BMC Geriatrics 19: 220. https://doi.org/10.1186/s12877-019-1217-9.
Milne, A. 2010. The ‘D’ word: Reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health 19 (3): 227–233. https://doi.org/10.3109/09638231003728166.
Murphy, K., F. Jordan, A. Hunter, A. Conney, and D. Casey. 2014. Articulating strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia 14 (6): 800–824. https://doi.org/10.1177/1471301213512489.
Novek, S., and H. Wilkinson. 2017. Safe and inclusive research practice 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.
O’Connor, D., and J. Mann. 2019. The meaning of ‘collaboration’: A candid conversation between a researcher and a dementia advocate. In Everyday citizenship and people with Dementia, ed. A.C. Nedlund, R. Bartlett, and C.L. Clarke, 75–90. London, UK: Dunedin.
Phillipson, L., and A. Hammond. 2018. More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia. International Journal of Qualitative Methods 12: 1–13. https://doi.org/10.1177/1609406918782784.
Pickett, J., and M. Murray. 2018. Editorial: Patient and public involvement in dementia research: Setting new standards. Dementia 17 (8): 939–943. https://doi.org/10.1177/14713012181789290.
Poland, F., G. Charlesworth, P. Leung, and L. Birt. 2019. Embedding patient and public involvement: Managing tacit and explicit expectations. Health Expectations 22: 1231–1239. https://doi.org/10.1111/hex.12952.
Prince, M., A. Wimo, M. Guerchet, G.C. Ali, Y. Wu, and M. Prina. 2015. World Alzheimer report 2015. The global impact of dementia: An analysis of prevalence, incidence, cost and trends. London: Alzheimer’s Disease International. Accessed January 20, 2018 from https://www.alz.co.uk/research/world-report-2015
Puurveen, G., A. Phinney, S.M. Cox, and B. Purves. 2015. Ethical issues in the use of video observations with people with advanced dementia and their caregivers in nursing home environments. Visual Methodologies 3 (2): 16–26. https://doi.org/10.7331/vm.v3i2.49.
Puurveen, G., S.M. Cox, C.A. Courneya, M. Gregorio, and M. Norman. 2018. (Re)storying informed consent for persons with dementia: The role of narrative and visual thinking. Poster Presentation, 9th Narrative Matters Conference. Enschede, The Netherlands.
Quennell, P. 2003. Getting a word in edgeways? Patient group participation in the appraisal process of the National Institute for Clinical Excellence. Clinical Governance: An International Journal 8 (1): 39–45. https://doi.org/10.1109/14777270310459968
Reisberg, B., S.H. Ferris, R. Anand, M.J. De Leon, M.K. Schneck, C. Buttinger, and J. Borenstein. 1984. Functional staging of dementia of the Alzheimer Type. Annals of the New York Academy of Sciences 435 (1): 481–483. https://doi.org/10.1111/j.1749-6632.1984.tb13859.
Richards, D.P. 2020. Don’t call my experience a patient “story”. BMJ Opinion. Published January 9, 2020. Retrieved from: https://blogs.bmj.com/bmj/2020/01/09/dawn-p-richards-dont-call-my-experience-a-patient-story/
Ries, N.M., E. Mansfield, and R. Sanson-Fisher. 2019. Planning ahead for dementia research participation: Insights from a survey of older Australians and implications for ethics, law and practice. Bioethical Inquiry 16, 415–429. https://doi.org/10.1007/211673-019-09929-x
Ries, N.M., E. Mansfield, and R. Sanson-Fisher. 2020. Ethical and legal aspects of research involving older people with cognitive impairment: A survey of dementia researchers in Australia. International Journal of Law and Psychiatry 68. [Published online] December 3, 2019. https://doi.org/10.1016/j.ijlp.2019.101534
Rubright, J., P. Sankar, D.J. Casarett, R. Gur, S.X. Xie, and J. Karlawish, 2010. A memory and organizational aid improves Alzheimer disease research consent capacity. Results of randomized controlled trial. American Journal of Geriatric Psychiatry 18 (12): 1124–1132. https://doi.org/10.1097/JGP.0b013e3181dd1c3b
Scambler, G., and A. Hopkins. 1986. Being epileptic: Coming to terms with Stigma. Sociology of Health and Illness 8 (1): 26–43.
Scottish Dementia Working Group Research Sub-Group. 2014. Core principles for involving people with dementia in research: Innovative practice. Dementia 13: 680–685. https://doi.org/10.1177/14713012145332255.
Sherwin, S. 2008. Wither bioethics? How feminism can help reorient bioethics. International Journal of Feminist Approaches to Bioethics, 1(1), 7–27. https://doi-org.ezproxy.library.ubc.ca/; https://doi.org/10.3138/ijfab.1.1.7
Smebye, K.L., M. Kirkevold, and K. Engedal. 2012. How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Service Research 12, 241. https://doi-org.ezproxy.library.ubc.ca/; https://doi.org/10.1186/1472-6963-12-241
Smith, S.C., A.A.J. Hendriks, S.J. Cano, and N. Black. 2020. Proxy reporting of health-related quality of life for people with dementia: A psychometric solution. Health and Quality of Life Outcomes. 18: 148. https://doi.org/10.1186/212955-020-01396-y.
Staniszewska, S., J. Brett, I. Simera, K. Seers, C. Mockford, S. Goodlad, D.G. Altman, D. Moher, R. Barber, S. Denegri, A. Entwistle, P. Littlejohns, C. Morris, R. Suleman, V. Thomas, C. Tysall. 2017. GRIPP2 reporting checklists: Tools to improve reporting of patient and public involvement in research. Research Involvement and Engagement 3(13). https://doi.org/10.1186/s40900-017-0062-2
Stevenson, M., and B.J. Taylor. 2019. Involving individuals with dementia as co-researchers in analysis of findings from a qualitative study. Dementia 18 (2): 701–712. https://doi.org/10.1177/1471301217690904.
Taylor, J.S., S.M. DeMers, E.K. Vig, and S. Borson. 2012. The disappearing subject: Exclusion of people with cognitive impairment and dementia from geriatrics research. Journal of the American Geriatric Society 60 (3): 413–319. https://doi.org/10.1111/j.1532-5415.2011.03847.
Waite, J., F. Poland, and G. Charlesworth. 2019. Facilitators and barriers to co-research by people with dementia and academic researchers: Findings from a qualitative study. Health Expectations 22: 761–771. https://doi.org/10.1111/hex.12891.
Webb, J., V., Williams, M., Gall, and S. Dowling. 2020. Misfitting the research process: Shaping qualitative research “in the field” to fit people living with dementia. International Journal of Qualitative Methods, 19: 1–11. https://doi.org/1-.1177/1609406919895926
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG
About this chapter
Cite this chapter
Puurveen, G., Mann, J., Cox, S. (2023). Centring the Human Subject: Catalyzing Change in Ethics and Dementia Research. In: Zima, T., Weisstub, D.N. (eds) Medical Research Ethics: Challenges in the 21st Century. Philosophy and Medicine, vol 132. Springer, Cham. https://doi.org/10.1007/978-3-031-12692-5_5
Download citation
DOI: https://doi.org/10.1007/978-3-031-12692-5_5
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-031-12691-8
Online ISBN: 978-3-031-12692-5
eBook Packages: Religion and PhilosophyPhilosophy and Religion (R0)