A considerable amount of literature exists documenting and/or dramatizing experiences encountered by caregivers of patients with dementia. An early example of this genre is the classic “36-Hour Day.” These books generally offer valuable insights and ideas that may help caregivers deal with crises and ongo- ing stresses.
Now Dr. Carol Berman, a New York City psychiatrist and psychoanalyst, has added her own story to this extensive literature, Surviving Dementia: A Clinical and Personal Perspective.
In brief, Dr. Berman’s husband developed Dementia with Lewy Bodies (DLB), the second most common degenerative dementia worldwide. Dr. Berman had to deal with a wide array of issues embedded in his inevitable decline. It is quite a task to handle all of this with aplomb, and nobody does. To help organize the problems of dementia and caregiver reactions to these, Dr. Berman’s new book describes her experience through the perspectives of Dr. Kubler-Ross and classical psychoanalysis.
The most compelling feature of this personal perspective is the haunting sense of loss, the pain experienced during her husband’s cognitive decline. The author suggests a very close and loving marriage, a fact that could conceivably be either more helpful or more troubling when it comes to the requirements of caregiving.
Each chapter documents aspects of Dr. Berman’s life, both before meeting her spouse and after- wards. These stories and vignettes are provided to create a background that would shed light on events and reactions. They are often intended to illuminate the basis for particular emotional responses, embedded in a Kubler-Ross and psychoanalytic structure.
Most readers will be familiar with the Kubler-Ross stages: denial, anger, bargaining, depression and acceptance. However, these stages should not be taken as a universal roadmap for understanding emotional responses to either dying or to the cognitive and behavioral decline seen in people with demen- tia. For example, the chapter on anger does not address a particularly thorny psychological response, anger at the patient. It is imperative that caregivers understand this emotion and be given license to experience this without guilt and without acting out.
Similarly, Dr. Berman’s emphasis on psychoanalytic constructs may seem arbitrary or confusing to some readers. Thus, “depression is frozen anger” co-exists with “anger is usually a cover-up for sadness.” Are anger and depression the same thing? Maybe sometimes, but not always.
Dr. Berman should be commended for offering her painfully acquired insights to others in the same situation. Perhaps the most important lesson to be derived from “Surviving Dementia” is that the creative drive and energy required to document a personal journey and also place it in a clinical perspective demonstrates that one can endure the long ordeal of caregiving and emerge a whole and productive person.