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DementiaReview - Dementia
Mind, Meaning, and the Person
by Julian C. Hughes, Stephen J. Louw, and Steven R. Sabat (Editors)
Oxford University Press, 2006
Review by George Graham, Ph.D
Jul 10th 2007 (Volume 11, Issue 28)

Dementia of the Alzheimer's Type (DAT) strikes some observers as an illness about which there is only grim news.  Decline into infantilism.  No effective drug treatment.  Huge burden on caregivers. That picture is a fearful negative stereotype of the disease.

I reject it, partially because, by disposition, I don't accept grim news about illnesses or disorders unless it's the only news that makes any evidential and moral sense.   In the case of DAT it certainly doesn't, as this book makes clear.

This is a book about hope for people with dementia and DAT in particular.  It is also about hope for family members, friends, and professionals, who care for people with DAT.  It is not that DAT can be cured or reversed or that individuals with the illness can lead perfectly normal lives.  They can't, at least in moderate to severe stages of the illness.  But it is about such hopes as the following: that people with DAT can live meaningful lives, that individuals who care for them are caring for a real them, real persons, and that much can be done in both the form and content of care to enrich the lives of people with DAT.

It's a complicated book.  There is more than one message in it, being a collection of 18 chapters or papers, of varying lengths and intellectual demands, whose authors constitute a disparate range of professionals concerned with DAT.  The authors include occupational therapists, physicians of various sorts, including specialists in gerontology and psychiatry, social workers, heads of dementia clinics, philosophers of psychiatry and of bioethics, and even a priest and a metaphysician.  Not a natural kind.  The contributors are Julian Hughes, E. J. Lowe, Jennifer Radden, Steven Sabat, Tim Thornton, and more than two dozen others.

Some papers in the collection are expository, describing theories offered by others (not in the collection) about matters that promote understanding of DAT.  Other papers are positional, offering answers to questions about DAT's etiology, course, dignified care, or its lessons for a proper understanding of personhood, old age, and dependency.  Still others are pastoral, encouraging forms of counseling and therapy for people with DAT, and discouraging forms of treatment that may presuppose unintentional indignities towards persons with DAT.

The editors are aware of some of the problems that the variegated content and demands of this book pose for a reader.  As they put it, some readers will "know more about dementia" but know little about philosophy, whereas others "will be interested in philosophy" but know little about dementia (p. viii).  Actually the problems are more complex than that.   There is little direct cross-talk or explicit bridge building among the chapters.  The content and manner of delivery is diffuse.  The three editors do, though, make a valiant effort in a rather lengthy editorial introduction to draw all the work of the collection together and to build connections with surrounding outside literature.

As remarked above, it is a book that expresses hope -- for persons with DAT and caregivers.  I have seven or eight favorites among its chapters.  I briefly mention several here.

Michael Bavidge, a specialist in continuing education, in a paper entitled 'Ageing and human nature', and Harry Clayton, a former executive with the Alzheimer's Society, in a paper entitled 'From childhood to childhood? Autonomy and dependence through the ages of life', write poignantly and insightfully about the content asymmetry in a human life between the emergent autonomy of a child and the loss of autonomy of an ageing adult or individuals with DAT.  Alzheimer's is not a second childhood; old age is not the infantilizing of an adult.  Clayton wryly notes that the childlike pleasure that a victim of DAT might take in music does not mean that "he would prefer nursery rhymes to Mozart's Don Giovanni" (p. 285).

In a short little but pointed piece, 'Dementia and personality identity', A. Harry Lesser, a philosopher at the University of Manchester, argues that although the loss of various cognitive and social competences in a victim of DAT may mean that this person has lost a sense of their own identity, by themselves such loses "give us no . . . ground for saying that the identity [of the person themselves] has been destroyed" (p. 61).  DAT is one course that decline in old age may take in persons but it is a "part of us" (p. 60).  There is an 'us', a person, of whom DAT is a part.

I am not sure I agree with Lesser's point that one can lose a sense of who one is and still remain a person.  The persistence of one's personhood depends, for me, on the preservation of at least some capacities for self-recognition, although perhaps (and this may be Lesser's reference) not of one's own identity per se.  The notion of identity may be richer than that of mere self-recognition.  Lesser, however, is forthright, and, like Bavidge and Clayton, appreciates the March of Time in Life.  The march bounds, frames, and, alas, thumps and bumps us off the stage.  But it also may console.  True, DAT can be immensely troubling.  However, caring for and loving a victim is, for Lesser, caring for a someone.  There is a them there.

Catherine Oppenheimer, a consultant old age psychiatrist, offers a paper entitled 'I am, thou art: personal identity in dementia', filled with therapeutically helpful anecdotes about what it may be like to be, as an individual with DAT, an inhabitant "of that country" (p. 193). When the effects of the illness make sophisticated memory and communication impossible, Oppenheimer notes, somatic matters (like honoring the care and appearance of a patient's body) may permit a caregiver and patient to communicate meaningfully with each other.

What or where is the 'I', the subject or self, of DAT -- in its severe stages?  This is a question asked by Carmelo Aquilina and Julian Hughes, the first a psychiatrist who specializes in self neglect in old age, the second one of the book's co-editors and chair of the Philosophy Special Interest Group of the Royal College of Psychiatrists, in a paper sub-titled 'Agency lost and found?'.  Consider the following theoretical possibilities: (i) non-existent but a projection of the observer, (ii) someone occasionally able to re-appear, (iii) a new person or guise entirely, or (iv) prisoner waiting to be freed.  This paper, along with a number of others in the collection, urges that caregivers should avoid the temptation to think of questions about where or what the person is in DAT as always admitting of definitive answers.  Sometimes such questions may; but sometimes, indeed, often, they do not.   The authors mention a victim of DAT named Mr. A. who sits all day "in a beanbag" and has "no verbal communication" (p. 155).  But he does express irritation on being handled by others.  So he is not a "living dead" (p. 158).

Many authors in this book appeal to the idea that human life has a distinctive kind of value, a 'narrative value' (to use a phrase used elsewhere in the literature), that endows a life with meaning and significance over and above the value of discrete episodes or events.  One of the vexing challenges faced by caregivers is how to conceptualize, or help to organize, recent events in the life of someone with DAT into intelligible and meaningful connection with the life of the person prior to the onset of Alzheimer's.  The caregiver may have to provide narrative scaffolding to keep a victim's life story intact -- adding sentences to the story, reframing the story line as an individual's own cognitive powers slip into disutility or absence.  DAT is a chapter, though, in that story; not a codicil.  A rich and suggestive, indeed, hopeful idea. 

Here are some other main themes in the book:

Much that is distressful about DAT is produced by the often 'malignant', if not necessarily intentionally so, manners in which individuals with DAT are treated.  A person with DAT is not a child; he or she is an adult.  A person with DAT, even in severe stages, may still be communicated with, although the specific vehicles of communication may not be speech but touch, not examining scrap books but sharing experiences in the immediate environment.  Much that is distressful about DAT can be avoided just by refraining from certain forms of de-humanizing treatment of an individual with DAT.

Also, DAT teaches that there is more to being a person than rumination and cognition.  We are socially situated and emotional creatures, not hyper-cognitive solipsists.  Our identity as persons is socially framed and supported.  Our autonomy as persons is a 'dependent autonomy'.  Without others and without caring for others our lives are not only impoverished, but not recognizably human.  So, DAT is a lesson provider; not a void of lesson-less despair.

A chapter.  Avoidable distress.  Lessons to be learned and shared.  There is hope in all that.  I recommend the book.  It may challenge the reader with its disparate scope, but is well worth the effort of careful examination.

 

© 2007 George Graham

 

George Graham is the A. C. Reid Professor of Philosophy at Wake Forest University in North Carolina.  He currently is writing a book on the nature of mental disorder.  He has helped to contribute two chapters to the just published The Blackwell Companion to Consciousness, edited by M. Velmans and S. Schneider.


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