Saturday, August 29, 2015

Book review: "Dignifying dementia: A caregiver's struggle" by Elizabeth Tierney

I recently picked up this book (published a few years ago) by Elizabeth Tierney, which details the drawn-out loss of her husband to dementia. It is a book that sticks in the mind not just for its unflinching depiction of a pitiless disease (which I won't dwell on here), but also for the variability in the behaviour of those people charged with helping these patients.

The book opens with a description of the author's husband during his younger days. The author paints a picture of a cultured Irish emigrant with a dull job and a wicked sense of humour, dividing his time between the North and South of the USA, a life not unlike many others. The onset of symptoms of dementia sets off a string of visits to a variety of physicians. After many consultations and failures to respond to medication, he is given a diagnosis of probable Lewy body dementia. Even when this diagnosis is finally made, the author expresses a nostalgia for ailments that receive a simple recommendation for treatment. Like many people who suffer from Lewy body dementia, he has a bad reaction to many of the medications used in trying to treat dementia and associated problems that go with it, although the book doesn’t stray into an anti-pharmacological polemic.

The bedside manner of at least some doctors, however, is another matter. Having sat in on a memory clinic that treats caregivers and patients with respect, I found the behaviour of some physicians striking. Some of the doctors the author encounters seem to automatically assume she should just allow her husband to die. Another offers the author a recitation from The Bible. When she protests that she is not religious, the doctor replies that he is, and continues unphased with his quotations. 

The general financial challenge of a spouse with dementia is confronted (albeit in a family that are not as bad off as others), as well as the difficulty of finding good professional to act as home help. Again, the lack of compassion of at least some of the people who work in the area is striking (Oh, you mean speak to him like a REAL person?). When one reads through the litany of reasons why various staff are rejected one can imagine how, from the outside, the author might come across as highly demanding as an individual. Nonetheless, from inside the author's view, the demands of dementia quickly put this all back in context. 

Towards the end, the author has received help from excellent doctors and assembled a good care team, and sometimes has a little more free time on her hands than she had earlier in the disease. One can understand how healthcare professionals can get jaded about "heartsink" conditions such as dementia, where the patient is unlikely to ever return to "normality". However, even in the absence of a cure for this disease, one comes away from this book thinking that there is much room for improvement in the consistency of how people with dementia and those that care for them are treated.

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