Born of desperation – a book by Henry Spencer

Henry Spencer, author of ‘Born of Desperation’

The term ‘desperation’ describes how many of us feel as we try to come to terms with Alzheimer’s disease. But the desperation Henry Spencer speaks about relates not to the disease itself, but rather to his frustration with many of the myths about Alzheimer’s disease that mislead those of us affected, especially those that offer false hopes of a cure.

Henry has worked in elder- and dementia care in South Africa and the United Kingdom since 1993. In this book he draws on considerable first-hand experience and research to debunk many of the myths relating to Alzheimer’s disease: what it is, possible causes, and the state of play in terms of treatments and cures.

It’s not surprising that people are desperate for a cure for Alzheimer’s disease and other dementias. And because the condition carries such a stigma and puts many of us into a state of denial, it is also understandable that many of us are confused about the condition and unsure of what to expect. But when we start looking for help, especially on the Internet, we can quickly become overwhelmed by advice and promises we are unable to verify. That is when it’s good to be able to rely on Henry’s critical faculties.

This very useful and readable book is in three parts, with many short chapters that over-stretched care partners can dip into when they have a moment or consult to answer a specific question.

The first part of the book explains what Alzheimer’s disease is, and describes changes in memory, behaviour and capabilities typical of the disease as it progresses. It even includes examples of some of the screening tools used in the assessment of Alzheimer’s.

Part two identifies, and provides counter-arguments to address, many of the myths around the causes of Alzheimer’s disease and possible cures. I prefer to err on the side of caution in order to avoid a diagnosis of dementia and, in fact, other chronic diseases that tend to express later in life. So, in any case I have had my amalgam fillings removed; would rather spend a couple of days in bed than have a flu shot; and don’t like artificial sweeteners anyway. So, even if they don’t cause Alzheimer’s disease, I am happy to avoid them. I’m sorry to read, however, that moderate alcohol consumption might not stave off memory loss … but I’m not pretending that it’s for medicinal reasons that I savour a glass of red wine in the evening!

I do agree that it is unlikely that any single medication will ever be found to cure this highly complex condition. (Some pharmaceutical companies that have recently terminated research into Alzheimer’s drugs seem to agree that this is a lost cause.) And no doubt many of the other attempts to find a ‘silver bullet’ cure – from supplements and vaccines to ultrasound and brain implants – will fail. And even if Dr Dale Bredesen’s protocol to reverse cognitive decline in Alzheimer’s has shown remarkable promise, the cost and discipline required to adhere to such a strict regimen for the rest of one’s life is beyond many of us.

Which leads me to the section of the book I enjoyed most: Part three deals with a host of strategies that help everyone affected by Alzheimer’s disease – whether the person with the condition or their loved ones – to live better as the disease progresses. Most of this advice focuses on how we as care partners can manage our own attitudes and actions to create a positive and supportive environment for the person with dementia. I particularly enjoyed the sections on various kinds of therapy, from music, art and pets to memento therapy and ‘nostalgia havens’. There are also practical ideas on how to respond to some of the behavioural issues associated with Alzheimer’s disease. And there is common-sense advice on what may help to protect our brains from cognitive decline – it’s the stuff we all know but often choose to ignore!

And finally, there are helpful lists of films, books and organisations in comprehensive appendices.

My personal ‘Aha!’ experience from reading this book was being alerted to the differences between dementia and delirium, particularly as it relates to general anaesthetics. I have often heard people describe how a major operation seemed to trigger dementia in an older adult. Henry disagrees, warning that post-operative confusion and behavioural changes are temporary reactions to the anaesthetic from which people will recover if properly supported. As illustrated in one story, assuming that a loved one has slipped into dementia can change the way in which they are cared for, and ironically reduce their chances of post-operative cognitive recovery.

It’s great to have a home-grown South African book providing such relevant, critical and compassionate advice. I hope that sharing this advice has alleviated Henry’s sense of desperation at the myths. His guidance is sure to reduce the desperation experienced by many caring for loved ones on the Alzheimer’s journey.