Beyond Loss is an anthology of clinical and philosophical perspectives on caring for people living with dementia. This reviewer occupies a privileged position with respect to reviewing this anthology, as a philosopher and a family member of a family coping with dementia. Fortunately, the cumulative effect of reading this volume is clarified insight into the needs and personhood of persons with dementia, and a new appreciation of what family-centered clinical research on dementia hopes to accomplish.

          The philosophical essays in Beyond Loss address normative notions of personhood, with application to persons and families living with dementia. The most compelling essay in this regard is offered by L. Örulv, in “The Subjectivity of Disorientation: Moral Stakes and Concerns.” This essay posits that the moral values and general normative outlooks of people with dementia remain, long past the onset of other cognitive impairments such as memory. The compelling evidence offered for this thesis is an ethnographic case study of the conversations of two women who reside in an assisted living facility. For family members coping with dementia, their conversations are hauntingly familiar, and the clinical research statements are surprisingly useful for practical and normative purposes. Örulv uses the concept of normative positioning, fluidly defined by individuals and others in their interactional context. In the case of people living with dementia, the participation of residential staff, family members, friends and spouses are crucial to fabricating the lived sense of “homeliness,” supporting the autonomy of residents to “host” their guests in this positioned setting. (193-194) This study of normative positionality shows that spatiality, or the normative tones of personal orientation, is intertwined with the participants’ sense of “how things should be done.” (204) Persons, families and staff living with dementia are beyond loss insofar as they understand and engage in the benign interactive positioning patterns that support the moral outlook of those living with dementia. Steven Sabat’s essay “The Person with Dementia as Understood Through Stern’s Critical Personalism” is dedicated to analyzing and defending Stern’s account of the autotelic and heterotelic normative dimensions of personhood. Sabat applies Stern’s concepts to a case study of interviews of an academic man living with dementia whose personal “present” remains purposeful and meaningful. (33) Sabat’s interpretation shows the successful implications of Stern’s bio-psycho-social model of the person; a model originally intended by Stern as a humanistic alternative to biomedical, neuropsychological models of personhood.

          The other philosophical essays in this anthology propose in various ways that persons living with dementia possess, despite cognitive impairments, normative and cognitive virtues associated with classical philosophical ideals of rationality. Due to this common premise, these arguments both succeed and fail. For example, Hilde Lindemann, in “Second Nature and the Tragedy of Alzheimer’s,” relies on Sara Ruddick’s concept of preservative love to maintain that the disease does not reduce the person living with it to the status of a non-person. However, Lindemann’s conclusion that preservative love is the non-tragic force keeping the personhood of people with advanced Alzheimer’s intact and dignified, may strike family members as truthful yet fails to soften the tragic insight that this person’s dignity, as conceived by Lindemann, may be utterly dependent on the social force of that love. Lennart Nordenfelt, in “Dignity and Dementia: A Conceptual Exploration,” summarizes four philosophical notions of dignity derived from Kantian concepts of autonomy and Enlightenment concepts of intrinsic rights, arguing that there are violations that dementia disability inflicts on the holders of these types of dignity. The conclusion is that the most extreme violation of dementia is to a person’s intrinsic autonomy and to her wisdom, by which is meant the knowledge whose object is human life. It is not clear whether Nordenfelt claims that one’s intrinsic autonomy is destroyed by this cognitive impairment or deeply insulted. Since intrinsic autonomy cannot be destroyed by contingent circumstance, the latter is a more feasible formulation. Again, the negative cast of these conclusions implies that persons living with dementia are either passively victimized or isolated by their impairment as violated individuals.

          Most of the essays in Beyond Loss contribute to a new body of family-centered clinical research on dementia. The best of these essays integrate phenomenologies of embodiment with clinical research findings to illuminate the meaningfulness of the lives of those who are affected by dementia. Jens Brockmeier’s essay “The Question of Meaning: Memory, Dementia and Postautobiographical Perspective” synthesizes and critiques clinical and philosophical assumptions of memory as a retrievable archive. Brockmeier persuasively argues that the archive model of memory falsely implies that personhood is necessarily anchored in autobiographical activity. His critique successfully leverages the neurological discovery that there is no biological difference between remembering, perceiving, or other forms of temporalization. The critique reveals the importance of understanding the temporalizations of people and families living with dementia as meaning formations, revealed as such by phenomenological insight, narrative activity, and ethnological observations.

          Among the essays in Beyond Loss that complement Brockmeier’s account, are those that analyze the significance of social activities such as musical expression between friends (Kontos), spousal story-telling and reminiscence (Hydén), and artists who continue to create (Phinney). All of these clinical research studies use qualitative methods such as interviews, discourse analysis, and engaged observation to produce a rich body of case studies that illustrate the social, embodied, and imaginative foundation of lives meaningfully affected, yet not destroyed by, dementia. Most are “family-centered,” with “family” defined in an open-ended way to include any who are engaged in meaning production with a person or family living with dementia. These shared activities show that this active engagement, if committed and focused, is a performative element in the construction of the well-being of those living with dementia. Join activities, as such, are the supportive scaffolding of the well-being, dignity, and normative vitality of the person who lives with dementia.    

© 2015 Kate Mehuron

Kate Mehuron, Associate Dean of Programs and Professor of Philosophy, Eastern Michigan University. Correspondence: kmehuron@emich.edu