Area 2: Personal Autonomy and Dependence in Dementia
Personal autonomy is at the heart of person-centred care or personhood-maintaining care for persons with diminished capacities (Kitwood 1997; Hughes 2014). Area 2 stems from the observation that, despite the recognized importance of promoting personal autonomy in the care of persons with dementia (PWD), significant conceptual unclarity affects the operationalization of autonomy in empirical research and healthcare practice. PWD identify the retention of personal autonomy and continuity of self as key elements of well-being in the face of increasing dependency on others (Wolverson et al. 2016; Gallagher 2010; Wright 2019) that substantially affect quality of life (Bamford & Bruce 2000; Fetherstonhaugh et al. 2013). Yet traditional models of personal autonomy used in N. American legal and health systems in relation to PWD remain heavily individualistic (Fineman 2005; Chan et al. 2014), resting on the Kantian view that only a fully rational and self-conscious agent can exercise autonomy. Emphasizing independence, self-reliance, rationality and individual decision making (Freeman 2011; Dworkin 1986), these models fail to reflect the lived experience and interests of PWD (Dresser 2003; Agich 2003; Jaworska 1999).
Area 2 aims to explore what personal autonomy means for persons with dementia, and propose a framework to guide autonomy promotion in the care of persons with dementia.
Phase 1:
Literature Review
Goal : Use critical literature reviews and philosophical conceptual analysis to formulate and publish theoretically informed accounts of the relation between personal autonomy and dependence.
Previous empirical studies showcase the expression of personal autonomy for PWD, but often lack a philosophically informed theoretical framework. Research on the lived experience of PWD reveals confusion regarding personal autonomy in this context, using terms such as “independence,” “agency,” and “autonomy” interchangeably without providing clear definitions or careful conceptual analysis. Shared language and a common knowledge base is essential to ensure effective collaboration and progress toward quality-of-care goals (Morley and Cashell 2017; Steihaug et al. 2017). Literature reviews focus on resolving conceptual unclarity regarding the working definition of autonomy and illuminating the reality of the lived experience of autonomy for PWD.
Phase 2:
Narrative Interviews
Goal : Conduct semi-structured interviews with informal caregivers of PWD and those with dementia.
We will integrate the results of the literature review with narrative methods to design an investigative framework and use it to observe and interpret the lived experience of informal caregivers of PWD and, where possible, those with PWD. To minimize communication barriers, interviews with PWD and/or their primary caregivers will be done in person, following a flexible schedule.
Phase 3:
Research Integration
Goal : Integrate research findings to mutually inform theoretical and empirical discourses concerning autonomy and dementia.
Findings from the literature review on the empirical and theoretical considerations of personal autonomy in the context of declining cognition will be combined with qualitative results from narrative interviews with carers and PWD. The results will help empirical researchers better operationalize “personal autonomy” while contributing insights to ongoing theoretical discussions concerning the nature of autonomy. The results of this phase will provide a second example of the way philosophical analysis and social scientific investigation can work together to enrich knowledge.
Phase 4:
Guidelines to Inform Solutions
Goal : Use the results of our conceptual and empirical research to develop guidelines for the provision of autonomy in the care of PWD.
The integration of results from the literature review and the narrative interviews will enrich the philosophical discourse on autonomy and enhance autonomy-supportive healthcare for PWD. A framework informed by this study can guide the provision of autonomy-supporting care for persons with dementia in long-term care and homecare settings.
Our Collaborators
In addition to our main researchers the following people will be close collaborators for Area 2;
Dr. Lisa Meschino
UHN Curriculum Lead and Research Associate
Lisa Meschino (PhD) is a Curriculum Lead and Research Associate at UHN’s NORC Innovation Centre. With a background in cognitive neuroscience, philosophy, and visual arts, she facilitates different community programs for aging in place. She specializes in relational approaches for engaging older adults, persons with dementia, and professional care partners.
Dr. George Heckman
Reference List
Agich, George J. Dependence and Autonomy in Old Age : an Ethical Framework for Long-Term Care. Cambridge University Press, 2003.
Bamford, Claire, and Errolyn Bruce. “Defining the Outcomes of Community Care: The Perspectives of Older People with Dementia and Their Carers.” Ageing and Society, vol. 20, no. 5, 2000, pp. 543–70, https://doi.org/10.1017/S0144686X99007898.
Chan, Tracey E., et al. “Evolving Legal Responses to Dependence on Families in New Zealand and Singapore Healthcare.” Journal of Medical Ethics, vol. 40, no. 12, 2014, pp. 861–65, https://doi.org/10.1136/medethics-2012-101225.
Dresser, Rebecca. “Precommitment: A Misguided Strategy for Securing Death with Dignity.” Texas Law Review, vol. 81, no. 7, 2003, pp. 1823–47.
Dworkin, Ronald. “Autonomy and the Demented Self.” The Milbank Quarterly, vol. 64, no. 2, 1986, pp. 4–16, https://doi.org/10.2307/3349959.
Fetherstonhaugh, Deirdre, et al. “Being Central to Decision Making Means I Am Still Here!: The Essence of Decision Making for People with Dementia.” Journal of Aging Studies, vol. 27, no. 2, 2013, pp. 143–50, https://doi.org/10.1016/j.jaging.2012.12.007.
Fineman, Martha. The Autonomy Myth: A Theory of Dependency. The New Press, 2005.
Freeman, Lauren. “Reconsidering Relational Autonomy: A Feminist Approach to Selfhood and the Other in the Thinking of Martin Heidegger.” Inquiry (Oslo), vol. 54, no. 4, 2011, pp. 361–83, https://doi.org/10.1080/0020174X.2011.592342.
Gallagher, Romayne. “The Lived Experience of Dementia.” Dementia, 2010, pp. 48–51, https://doi.org/10.1201/b13196-15.
Hughes, Julian C. How We Think About Dementia : Personhood, Rights, Ethics, the Arts and What They Mean for Care. Jessica Kingsley Publishers, 2014.
Jaworkska, Agnieszka. “Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value.” Philosophy & Public Affairs, vol. 28, no. 2, 1999, pp. 105–38, https://doi.org/10.1111/j.1088-4963.1999.00105.x.
Kitwood, T. M. Dementia Reconsidered : the Person Comes First. Open University Press, 1997.
Morley, Lyndon, and Angela Cashell. “Collaboration in Health Care.” Journal of Medical Imaging and Radiation Sciences, vol. 48, no. 2, 2017, pp. 207–16, https://doi.org/10.1016/j.jmir.2017.02.071.
Steihaug, Sissel et al. “Challenges in Achieving Collaboration in Clinical Practice: The Case of Norwegian Health Care.” International Journal of Integrated Care, vol. 16, no. 3, 2017, pp.3, doi:10.5334/ijic.2217
Wolverson, E. L., et al. “Living Positively with Dementia: a Systematic Review and Synthesis of the Qualitative Literature.” Aging & Mental Health, vol. 20, no. 7, 2016, pp. 676–99, https://doi.org/10.1080/13607863.2015.1052777.
Wright, Megan S. “Dementia, Healthcare Decision Making, and Disability Law.” The Journal of Law, Medicine & Ethics, vol. 47, no. 4_suppl, 2019, pp. 25–33, https://doi.org/10.1177/1073110519898040.