Henry Spencer, author of 'Born of Desperation'

Born of desperation – a book by Henry Spencer

Henry Spencer (1024x766)

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.


Forests teach us gently to accept the cycle of life

Dementia and the mid-life breakthrough

Forests teach us gently to accept the cycle of life

Forests teach us gently to accept the cycle of life

Mid-life is a time when many of us have the opportunity to care for a person living with dementia. Whether that person is your parent, partner or friend, their diagnosis can be life-changing.

The term ‘mid-life’ is often associated with another word: ‘crisis’! Dementia is unlikely to be the only challenge we have to cope with at this time. Facing empty nests, health scares, relationship breakdowns, career collapses (or all of the above), few of us sail through mid-life without experiencing the loss of something significant that we relied upon for our sense of identity or security.

My initial reaction to the losses experienced during this period was resistance – a big fat “No!” But I’ve come to appreciate that the stripping away of the familiar and the certain was an invitation to step into another (and wonderful) phase of life.

Researcher Brené Brown writes and speaks about the power of vulnerability. In her book, The Gifts of Imperfection, she famously reframed what she could have labelled a ‘nervous breakdown’ as a ‘spiritual awakening’. It may feel like a big ask, but even a tentative “Yes” in the midst of the chaos is enough to start transforming the mid-life crisis (and even our experience of our loved one’s dementia) into a time of unexpected blessings.

Looking back, I recognise that what I most needed to learn during mid-life was how to get out of my head! My busy brain needed to quieten down – to stop analysing, judging and trying to fix everything – and learn how to simply be.

There are many sources of support that can help us find our way through the challenges of mid-life. Two practices helped to transform my mid-life muddle in general, and my experience of Mum’s dementia in particular.

The first was a technique called Heart-focused BreathingTM that I learnt from my HeartMath® coach. Simply shifting my attention to my heart and my breath for short periods throughout the day created moments of calm in my previously unpunctuated life. I learnt to put down my burden of stress, rather than allowing it to snowball and become overwhelming.

The other was a Nature Solo practice. Every week I would spend a few hours silently observing nature and applying what I noticed to my life. One of the most valuable things I learnt was to accept without judgement each successive stage of life and to recognise its unique and inherent gifts.

Practising calm and acceptance transformed the times I spent with Mum and my experience of her dementia journey. Learning to be quiet and observant in nature enabled me to spend time quietly with Mum, not having to talk but simply savouring the experience of being together.

Shifting attention from my busy brain to my heart and breath, spending unhurried time in nature, and being present with my mother in the last years of her life – these may not seem like much as a list of ‘achievements’ but they have fundamentally transformed my life.

What started as a mid-life crisis feels now like a mid-life breakthrough.