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This collection is particularly timely. There is a widespread and growing interest in dementia today, in part because, as the editors note in their introduction, the coming decades will see a dramatic increase worldwide in the number of those suffering aged-related dementias. At the same time, neuroscience has invited new philosophical analyses of cognition, embodiment, social relationships, and personal identity. The book's purpose, suggested by the "Beyond" in its title, is to break free of the usual ways of thinking about dementia, where the sufferer is first and foremost a patient, and the disorder is seen as unalloyed loss (of capabilities, of agency, of identity or even personhood).
The editors have assembled an international group of contributors from the Scandinavian countries, France, UK, US and Canada, many renowned experts on aspects of disability, identity, and dementia. There is cross-disciplinary variety: the contributors are philosophers and linguists, as well as assorted psychologists, and other social scientists, theoreticians and practitioners. The work is divided into three parts, the first two dealing with issues and theorizing around persons, personhood and dignity, and identity, agency and embodiment, and the third more practically oriented, bringing in aspects of communication, family and institutions. Together these twelve chapters present a fuller and more hopeful depiction of the dementia sufferer. Even with her deficits, she still possesses some agency; she continues to warrant treatment as a person because of her continuing personal identity; and she is -- or can and should be -- 'scaffolded' by the efforts of those around her, and aptly represented in less individualistic, and more relational, terms. This revised model of the dementia sufferer is showcased here through examples and clinical vignettes involving conversation, storytelling and artistic expression recognized as a form of embodied identity.
Chapters in the first section advance the concept of personhood attributions and status through original philosophical analysis. Hilde Lindemann employs the category of second nature to argue that personhood cannot be withdrawn from the person with dementia. Lennart Nordenfelt examines the dignity accorded to humans, arguing that in one form (the dignity ofMenschenwürde), it is an inalienable attribute, as much possessed by those with dementia as all other persons. Using a model of personhood derived from William Stern, Steven Sabat demonstrates how many cognitive and social capabilities remain unimpaired in the dementia sufferer.
Several chapters address the broader social-cultural context, often the family unit, within which the dementia sufferer must be understood, emphasizing and illustrating social embededness. For example, the concept of dignity is developed by Ingrid Hellström in the spousal dyad when one partner is affected by dementia. She illustrates the way dignity, and a sense of self, are interwoven and together reinforced within close relationships. Included in this category are chapters illustrating the social 'scaffolding' or 'facilitation' employed to remedy the cognitive and other deficiencies resulting from dementia. Some of the most interesting of these involve ways to deal with verbal deficiencies. Camilla Lindholm's chapter on comprehension in interaction, based on observation of caregiver responses in an inpatient facility shows the attention to conversational practices (such as particular question forms) that can better support the patient's efforts at meaning-making. Lars-Christer Haydén explores how as a collaborative activity, story telling is a natural and familiar way of acknowledging the tellers' identities, including that of the patient with dementia.
Scaffolding is an important category in contemporary thought, associated both with technological scaffolds and with the constitutive role of the social environment in all normal cognitive activity. Applying the idea to dementia patients, as several of these authors propose doing, is only giving a new name to an old idea. In innumerable ways, large and small, practical, rhetorical and symbolic, these discussions show, others can assist to make up for, support, and minimize the deficits increasingly afflicting the dementia sufferer – as well as enhancing, validating and utilizing her remaining strengths.
Along with its intrinsically social nature, the embodiment of the person is presupposed in all these chapters. Embodied conceptions of identity allow authors to show the way the dementia sufferers' identity can shine through in music, movement, and other non-discursive activities after their cognitive capabilities are considerably depleted. Thus, Pia Kontos speaks of "musical embodiment" in her discussion, and Alison Phinney illustrates "bodily speech" in the way those with moderate dementia can still imbue their actions with meaning, and convey their personalities and personhood. These chapters make use of philosophical works such as Merleau-Ponty's, which have so illuminatingly explored the nature of embodiment. Particularly for readers more familiar with analytic philosophical traditions, these discussions are a salutary reminder of the possibilities opened up by phenomenological categories and approaches.
Models from neuroscience are appealed to in Jens Brockmeier's re-consideration of the ideas about memory and its loss so entwined with conceptions of early stage dementia. These ideas have long upheld, and been supported by, individualistic ideas about the person and personhood. Cut loose from these underpinnings, memory and identity can each be re-construed in ways that are more socially and culturally embedded. If, as much recent theorizing including that about extended minds suggests, mental processes can be located beyond the confines of any given individual skull, then memory can be detached, too, from individualistic experience and capabilities; if minds can be supported (or scaffolded) by social and technological means, then so can memory. But Brockmeier goes further, explaining that new findings in brain science require us to reconsider the very ontology of memory. Memory belongs to the same family as "identity" and "person," he insists – concepts that "do not denote given objects in the material world but rather unstable meaning constructions ascribed to and negotiated among individuals who, in the process, are defined and redefined by others and by themselves." Thus, he concludes, "identity appears to be realized in the process in which people act out their personhood: it is not so much expressed in actions…as created by being enacted.." (Brockmeier 2014:76-77)
For the most part, authors here assume rather than discussing the fundamental questions about personhood and respect that arise when we try to provide ethical grounding for their "person centered" approach. There is a vast philosophical literature on this question of respect for persons, dating at least to Kant, wherein the grounds for respect are qualities that are innate, inalienable and invariable. These fundamentals are also found in human rights documents, where they are cast in terms of dignity. In an important chapter applying these respect-related categories to the case of the dementia sufferer, Lennart Nordenfelt shows that the concept of dignity breaks apart: it may be an alienable, variable quality that is accorded to others on the basis of either merit, moral stature, or identity. Or, it may be closer to the German Menschenwürde : a dignity that we possess as human beings, unearned, inalienable and invariable.
Lingering concerns about the promise of this new model of dementia remain that I'll note briefly. A fine line separates realistic assessment and a kind of optimism about dementia that borders on wishful thinking. The challenge for the authors and editors is to avoid overstepping that line. In an example to illustrate what I mean, earlier efforts to identify personhood with being a meaning-making or semiotic subject have been used to justify the attribution of personhood to those with advanced dementia (Sabat 1994). Yet in a critique, this approach has been likened to understanding psychotic thought disorder: proffering alleged "clarifications" that necessarily run the risk of "leading the witness" (Greenberg 1994: 164). The analogy with psychotic language is dubious, but the risk remains comparable. Because of the dementia patient's eroding cognitive capabilities, the danger of unwarrantedly projecting intentionality when none remains increases as the disease progresses.
"Person-centered" treatment that has proven valuable in bringing about improvements in the way dementia sufferers are viewed, cared for, and responded to, a growing research literature attests. And a theme uniting these different chapters stresses that because those with dementia are persons, they deserve such treatment. Personhood may not be ideal in this justificatory role inasmuch as it has been variously characterized within philosophical writing, often relying on criteria such as self-consciousness, rational agency, and cognitive-affective capabilities. The person with the earliest signs of dementia is rightly described in any, and probably all, personhood attributes, and empirical findings indicate that such attributes are often present long after they have often been mistakenly withheld. Nonetheless, such capabilities gradually decline in those with dementia until, arguably, they are entirely lost. Attributing qualities resting on present capabilities, it's possible we approach this matter in the wrong way because of the progressive nature of age-related dementia. Nordenfelt acknowledges this issue when, discussing the wisdom attributable to the elderly, he notes that although "life's long experience…gives a good ground for wisdom, to many people a sufficient ground," the person with severe dementia cannot be called a wise person "in the full blown sense." Instead, we can say that some wisdom remains "sedimented in the unconscious structure of the body" (of the person with dementia) (Nordenfelt 2014:50-51). By treating wisdom as an inalienable status, rather than a present capability, Nordenfelt may be able to avoid the immediate problem of the person losing wisdom with advanced dementia. Wisdom may be more like adulthood, say, than like agency or self-consciousness. (This would also allow him to avoid metaphors locating it in the body, which, although not wrongheaded - like any other property, a person's status will be embodied - are unnecessary.)
Whether personhood carries too much philosophical baggage to be the category we need for the more enlightened and positive attitudes and practices endorsed here, seems not entirely resolved. As a first step towards that resolution, and in opening up new and exciting ways to understand identity and meaning on which further investigations can build, this book is impressive. And certainly, scaffolding dementia sufferers must to be undertaken on several fronts. In a discussion of how those with dementia can be aided these ways, it has been observed that a malignant social psychology sometimes makes things worse, resulting in limitations that are more perceived than real. Altering the environment to achieve optimal social conditions will be part of this process of scaffolding. As well as anything more practical, it may involve changing expectations, confronting preconceived ideas, educating and altering attitudes in those who interact with the person, and revising the cultural discourse around identity and cognitive ability. Beyond Loss: Dementia, Identity, Personhood is a valuable example of this important effort.
Greenberg,W. 1994. Commentary on "The Alzheimer's Disease Sufferer as a Semiotic Subject". Philosophy, Psychiatry & Psychology 1: 163-4.
Sabat, S. 1994. The Anzheimer's Disease sufferer as a semiotic subject. Philosophy Psychiatry & Psychology 1: 145-61.
© 2014 Jennifer Radden
Jennifer Radden, University of Massachusetts, Boston