Review of "Decision Making, Personhood and Dementia"
By Deborah O'connor and Barbara Purves (Editors) Jessica Kingsley, 2009 Review by L. Syd M Johnson, Ph.D. on Jun 1st 2010
The philosophical, bioethical and legal literature on decision making and dementia has long been dominated by discussion of diminished capacity, and its consequences for autonomy and self-determination. Dementia is frequently recognized as an illness that spells an end to autonomy and self-determination in affected persons, and by some lights, in its advanced stages dementia may result in a loss of identity and personhood. Much research on dementia is focused on compensating for these effects, by developing better measures of capacity and competence, and improving advance directives to guide decision-making for affected persons. Such measures are intended to preserve a modicum of the autonomy and self-determination irrevocably lost to dementing illness.
Decision-making, Personhood and Dementia: Exploring the Interface is an interesting and significant volume of essays which seek to trouble the current discourse on dementia, suggesting new ways of approaching personhood, capacity, and decision-making in the context of dementia. The essays in the book come out of an international, interdisciplinary research workshop at the Centre for Research on Personhood and Dementia, held in Vancouver BC in 2007. Collectively, the authors propose a more holistic, affirming, and culturally sensitive approach to assessing the decisional capacities of persons with dementia, fostering decision-making that is inclusive of different cultural perspectives and values, and promoting a more expansive view of personhood in dementia.
The book is organized into three sections: Conceptualizing the Issues, Policy and Practice Issues, and Understanding at the Everyday Level. One of the virtues of the volume is the inclusion of distinctive cultural perspectives. Daniel Fu-Chang Tsai's chapter in the first section, "A Confucian two-dimensional approach to personhood, dementia, and decision-making" contrasts the traditional western conception of personhood, which reifies cognitive capacity, with a two-dimensional Confucian conception. In the latter, the autonomous dimension of personhood may be lost through dementia, but the relatedness, connectedness and dependence among persons with dementia and their families and friends survives the loss of cognitive capacities. Under this conception, the personhood of the dementia patient can never be entirely lost, so long as the bonds of love, affection and mutual relatedness persist, even if it is not equally felt by persons with dementia owing to the advancement of their disease. The chapter by Wendy Hulko and Louise Stern, "Cultural Safety, Decision-Making and Dementia: Troubling notions of autonomy and personhood" further interrogates the concepts of autonomy and personhood. They do this by considering collectivist cultures, such as Canadian aboriginals for whom the sense of self is more embedded in the community than in the individual, and Jewish culture and tradition, in which individual or personal autonomy is precluded by ethno-historical factors and adherence to religious law. In the section on policy and practice, O'Connor and Martha Donnelly consider dementia care for patients who are victims of domestic abuse in "Confronting the challenges of assessing capacity: Dementia in the context of abuse." The chapter addresses decision-making capacity within the complicating context of abusive relationships, and make an important and much-needed contribution to the literature on dementia. Despite the well-documented vulnerability to abuse of persons with dementia, there has been scant attention paid to the pragmatic link between abuse and capacity. O'Connor and Donnelly note the importance of understanding that in situations of abuse, relational connections are paramount to women's definitions of themselves, and provide a vital context for understanding their actions, choices, and lack of choices.
The third section of the book considers ways to address the extended network of persons affected by and involved in decisions about dementia care. In "Families, Dementia and Decisions," Purves and Joan Perry address the need to attend to the way families approach decisions, as well as the complexities of familial dynamics not only in the context of dementia care and healthcare, but in everyday life as well. This is particularly acute in the context of dementia when the judgment and understanding of patients may be compromised such that they can no longer make genuine choices that reflect their own interests and values. In such contexts, decision-making by a caring family may be as good as it gets.
The book cohesively integrates interrelated themes towards the goal of addressing the implications of a social constructivist view of personhood in dementia practice and care. Taken as a whole, the project points to two practical messages: the first is the need to challenge the conventional focus on autonomy and cognitive capability by emphasizing relationships; the second is to shift attention from the capacities and abilities lost to dementia, to a more inclusive understanding of what is retained by persons with dementia, so that participation in decision-making can be maximized irrespective of cognitive functioning.
The book's weakness, which may limit its appeal to a more general audience interested in dementia care, such as persons with dementia and their families, is a reliance on academic jargon that would be unfamiliar to many individuals outside the academy. Instead, the audience for this book includes bioethicists and legal scholars interested in issues related to dementia, as well as clinicians, psychologists, social workers, and others who work with persons with dementia. The book draws much-needed attention to how dementia care is practically affected by our conceptual biases about the primacy of cognitive ability, and how persons with dementia are marginalized and minimized by an approach that focuses on capacities that have been lost rather than on creatively enhancing and utilizing what remains. The book's challenging analysis, as well as its substantive pragmatic emphasis, make a vital contribution to the growing literature on dementia.
L. Syd M Johnson, Ph.D., is a philosopher-bioethicist and post doctoral research fellow in neuroethics at Dalhousie University. Her work focuses on the ethical implications of new developments in neuroscience, with particular emphasis on disorders of consciousness and dementia, as well as ethical problems in beginning and end-of-life care. Research funded by Canadian Institutes of Health Research, MOP 77670, Therapeutic Hopes and ethical concerns: Clinical research in the neurosciences and by Canadian Institutes of Health Research, NNF 80045, States of Mind: Emerging Issues in Neuroethics.