Dementia hit the headlines this week, having achieved the dubious honour of becoming the biggest cause of death in Australia, surpassing heart disease. This guide to what we can do to prevent, prepare, cope and understand the illness is very timely.
Dr Kate Gregorevic is a geriatrician who works at a Melbourne hospital, and the book is peppered with real life anecdotes from her research and practice.
Twenty questions frame the book’s structure and content, including:
What is dementia and are you at risk?
What are the symptoms?
What causes Alzheimer’s?
What is life like for a person living with dementia?
Do people with dementia have the capacity to make decisions?
Can improving diet help to avoid dementia?
How do we live well with dementia?
Most people have been touched by dementia in some way: we have a loved one who lives with the disease, or we know a workmate, neighbour or friend who has been diagnosed, or who cares for someone who has been. So, these very practical questions and the wealth of information included are welcome and useful guides to the illness and what we can expect as it progresses.
There were sections that resonated strongly with me after watching my mother’s decline with the condition. For example, the insidious way it often begins, creeping up slowly at first, often confused with ‘normal’ age-related memory loss:
The onset of dementia is so insidious that it often takes something really obvious, an example of memory loss that is so stark, so unforgiving, that it is impossible to look away. This is often when the reframing begins, when all the little things that were so small in themselves start to coalesce.Before Dementia pp23-24
Other points that especially resonated with me because of my own experience included the nature and role of delirium, the phenomena known as ‘sundowning’, the creation of false memories, and the sometimes-catastrophic effect of hospital admissions,
There is a fair bit of technical information in the chapters to do with the causes and types of dementia. I admit I glazed over a little here. However, I appreciated the author’s desire to translate the latest thinking and discoveries in what is still a contested field, into language that can be read by a non-medical person.
Ethical challenges are presented openly, and it is up to each reader to decide where they stand on issues such as the capacity of a person with dementia to make decisions about their future care and living arrangements, consent for sexual activity, the right to autonomy and independence. A point that strikes me as a tricky but interesting one, is what Dr Kate terms the ‘dignity of risk’:
Living well with dementia means accepting the dignity of risk. Many people with dementia will be able to live independent lives, but they may not be perfectly safe.Before Dementia p295
I appreciated the plea made in this book for adequate funding for aged care services, for recognition of the disadvantages faced in all areas of life by Aboriginal and Torres Strait Islanders in Australia, and for the value of putting into place as many protective measures as possible as early as possible: improved diet, regular exercise, giving up smoking and excessive alcohol consumption, social and cognitive activity.
If I were a patient or a family member, and lucky enough to be a patient of Dr Kate, I am sure that I would value her humanist and person-centred approach to living well with dementia.
While I’m certain that most of us would much prefer NOT to have to think about this disease, and just hope that we or our loved ones won’t ever have to deal with it, I can highly recommend this book. It tackles a difficult subject in a helpful, practical way that removes the ‘overwhelm’ and allows the reader to learn from the experts.
Before Dementia is published by HarperCollins in February 2023.
My thanks to the publisher for a review copy.