The experience of Alzheimer's disease: life through a tangled veil Steven R. Sabat Blackwell Publishers Ltd.: Oxford; 2001 368 pp. US$26.95 ISBN 0-63121-666-9
It's not often that I encounter a book that changes the way I look at a clinical problem, especially one so familiar to me as Alzheimer's disease. With 25 years' experience as a geriatrician, I had become comfortable with the concepts and issues surrounding the care of people with dementia. And so, although I welcomed the opportunity to review Steven Sabat's The Experience of Alzheimer's Disease, I was not prepared for the impact it would have on my perspective of people afflicted with this disease.
Sabat's approach and writing style are very engaging. The basis for his cogent and perceptive observations is clinical cases that he has been deeply involved with over a long period. From these he postulates a dynamic that allows the reader and, one hopes, treating clinicians to focus not on the deficiencies suffered by people with Alzheimer's disease, but rather on their remaining and often very substantial strengths. His special interest in language difficulties, a well-recognized component of Alzheimer's dementia, makes for illuminating reading. Interspersed with clinical vignettes, which are rich with recorded dialogue, are observations and interpretations of these encounters. Throughout his dialogues and commentaries Sabat repeatedly emphasizes that
healthy others in the afflicted person's world (e.g., family, friends and professional care providers) may position him or her primarily as a member of a group such as “the demented,” or “Alzheimer's patient” and thereby overlook, or pay less heed to, other qualities in which that person may take pride. Once such an attribution is made, it is very difficult for all concerned to see the individual person any more, for the fate of the categorized individual may be lost in the stereotype.
Sabat emphasizes the importance of looking for “meaning” in the communication of patients with Alzheimer's. What may seem as erratic, agitated or confused behaviour may result from the listener's failure to discern the meaning behind certain actions, which the patient cannot express because of language problems. He also notes something that I have come to appreciate in my clinical practice. When people are emotionally aroused or worried, “the ability to process and retain information is often compromised. For the Alzheimer sufferer, the situation is even worse.” It is often a busy clinician who provides the framework for cognitive testing, and because of a combination of the patient's anxiety and the physician's haste, the process of communication and diagnostic evaluation may be suboptimal. Even during interactions with family members and other caregivers, the patient's anxiety and a sense of the listener's impatience can result in greater agitation and apparent confusion.
By combining clinical vignettes and commentary, Sabat draws the reader into the lives and minds of the subjects who provide material for his reflections. They become vibrant characters whose experiences of and observations on their own disease progress is sometimes very poignant. It is clear from the text of the interviews, and from Sabat's uncanny ability to help translate the sometimes-garbled sentences into meaningful dialogue, that the people we encounter in this book are far more capable than most clinicians would tend to assume. I found myself realizing that I, too, have ignored or dismissed efforts to communicate of the kind Sabat captures so well.
Even in the midst of reading this book for review, I started to communicate differently with patients with Alzheimer's disease and their families. I began to take note of evidence of strengths in my patients and evidence of impatience and the misreading of cues by caring family members. I noted that families sometimes took the lead from long-term hired caregivers, who often seemed to be better at understanding the meaning behind garbled words. The best of these caregivers seemed to exhibit extraordinary gentleness and a respect for the person imprisoned in the Alzheimer's persona.
This is a “must read” for any practitioner whose clientele includes patients with Alzheimer's disease. Sabat's book is unlike others that recount personal and family experiences, or professional works that help practitioners understand the mechanisms of the disease. It combines humanity, humility and a clear conceptual framework that can be put to practical use. While captivating the reader, Sabat provides insights that can be extremely helpful in clinical practice and program development. His fundamental message is that each person afflicted with Alzheimer's disease is an individual whose special essence we must endeavour to find and to nurture for as long as possible