The Man with a Shattered World

The subjective experience of dementia is a difficult reality for doctors and lay people to grasp. This absorbing and brief monograph by the great Russian neuropsychologist A R Luria is short (and compelling) enough to read in one sitting and invites immediate rereading and reflection. Although it is based on a case study of a different illness—brain injury—the lessons and insights from this astonishing narrative have enormous relevance for those affected with dementia. Luria presents and comments on the diary of one of his patients, Sublieutenant Zasetsky, a soldier in the Soviet army whose severe left sided brain injury from a bullet wound in 1943 left him with profound perceptual, memory, and language problems.

Covering a process of rehabilitation and therapy extending over 25 years, the journal arose when, growing impatient with attempts to regain speech and relearn writing letter by letter, Zasetsky was encouraged to write spontaneously, and it was discovered that he had an automatic ability for writing—even though he could not read what he had written. The writing process was clearly therapy as well as story telling and is a remarkable early example of ability based rehabilitation: focusing on what a patient can do rather than on what they can’t do. The book evinces a remarkable lack of self pity, and we share Zasetsky’s aspirations, juxtaposed with his sense of bereavement over what he has lost.

Some parts of the book should be compulsory reading for all professionals dealing with people with memory and language problems. In one sequence Zasetsky outlines with heartrending effect how, noticing discomfort in his abdomen, he could not immediately tell that this was due to the need to defecate. Then, slowly realising that he could not utter a verbal plea for help, he decides to gesture for assistance. As the nurse passing the end of the bed ignores him, he comprehends that he has forgotten how to gesture in a way that will attract attention: how often have we been the person passing the end of the bed of a patient with dementia who was trying to tell us something. Equally touching and thought provoking is the scene where he leaves hospital. He recounts how his mother and sisters were overjoyed to see him and hugged and kissed him. He, although also overjoyed, has forgotten how to kiss. A feeling of loss of affection and relationship from the person with dementia can hugely affect carers, and such insights as this book offers can help us to discuss with relatives whether what they are experiencing from their loved one may be not so much a loss of affection as inability to express it and to explore other ways to enable these emotional interchanges.

An added richness of this classic is the inspiration that clinicians can gain from Luria’s extraordinary engagement and persistence over several decades with what many would have deemed to be a helpless case. He unintentionally reiterates to us that a deep sense of humanity can be combined with intellectual curiosity and rigour and that the most vulnerable patients are precisely those on whom we should focus our attention.

The joint work between patient and clinician has a quiet, modest, and sustained heroism that is all the more remarkable for its restraint. I would guess that both author and diarist would stubbornly resist, and be irritated by, any attempt to label this book as “inspirational”; but as a grittier counterpart that does for memory and language disorders what the Diving Bell and the Butterfly does for severe disability after stroke, it is among the handful of clinical narratives that truly deserves the epithet.