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Review: Diagnosed with Alzheimers or Another Dementia by Kate Swaffer and Lee-Fay Low


Diagnosed with Alzheimers or Another Dementia, 1 Sep 2016, by Kate Swaffer and Lee-Fay Low

Book available here

I loved reading this up-to-date book, and this title is essentially a ‘must read’ whatever your connection to person living with dementia might be. This relatively new book is an essential read if you wish to familiarise yourself with the key issues in Alzheimer’s disease and other dementias. As the authors explain, you might have received a diagnosis yourself, or somebody close to you has. And therein lies the first source of power of the book. This is a book partly written by Kate Swaffer, possibly the world’s leading advocate in dementia living with a dementia herself. There are few books which meaningfully discuss the issues of living with dementia from a contemporary rather than historic perspective, for other people with dementia and people in a caring rôle, from somebody who herself has met thousands of people with dementia as a world leader. Though Kate is only one person living with dementia, and Kate would not dare to pretend to be the representative of all 49 million people living with dementia in the world, Kate’s contributions are clearly identifiable to me as having enormous gravitas and immense accessibility. Having said that, however, Kate happens to be an exemplary rôle model.

I found myself noticing certain things about the book, having written three books myself. This particular title is far better than anything that I could’ve written. Firstly, this book is not cluttered or slowed down by loads of references. This is great, and makes the book in fact highly enjoyable to read. That does not make the book a stream of consciousness or informed opinion. Here are two authors who know what they are talking about, Kate Swaffer and an Associate Professor Lee-Fay Low. The writing style of the whole book is seamless and elegant, and does not come across as a clunky chain-letter with vastly different writing styles from the two authors. The tone of the book is infused with a deep interest and passion in the humanity of what it is like to live with dementia, which would have been simply impossible from an authorship not living with dementia. The book – as it happens – accurately reflects the current global literature on dementia, as I know it, but I think will help to guide the future of the shape of the global literature. The big bonus of this book is that it will go a huge way to fight the societal stigma that surrounds the dementia experience for many. In the context of the brilliant contemporary drives for ‘dementia friendliness’ (and genuine inclusion), this is wonderful.

Writing a book if you live with dementia is the ultimate form of ‘empowerment and engagement’ you could provide. This book can be read equally well by a person who has received a diagnosis of dementia himself or herself, a carer, an academic, practitioner/professional, or otherwise. The discussion of what caring means is brilliant, and I particularly loved the discussion of ‘backup brain’ as an alternative to the word carer. This perspective is entirely in keeping with viewing dementia as a condition which provides neurocognitive rehabilitation potential, and the book does not shy away from great tips about dealing with dementia you would find difficult to find elsewhere. There’s a great section on global myths surrounding dementia, and an impressive discussion of Kate’s original contribution to the field – prescribed disengagement™. There’s a strong human rights and disability activism twang to the book, and I couldn’t turn the page without learning something new (for instance autoethnographic approaches to self-reflection in living with dementia, neuroplasticity and learning in dementia). All of these sections are woefully under-represented in other guides and books to dementia, and provide a much-needed refreshing and original read.

I don’t think you must live in Australia to benefit from the book, though the signposting of services is complete if you do happen to live in Australia. But this is the perfect book to have if you’ve been newly diagnosed with dementia wherever you are. I think there are too many books, written by medics for medics for example, which really do not address the needs of persons with dementia or backup brains, and this book fills that critical void. It’s incredibly reasonably priced, which means that the primary aim of this book is clearly to educate as many people as possible – in modern times, this is thoroughly admirable.

I would definitely recommend this book to anyone, ranging from any members of the public who want to know what ‘dementia’ is (it contains some complicated areas brilliantly explained too including types of dementia and both pharmacological and non-pharmacological interventions), to current health professionals wanting to brush up on their knowledge and relevant attitudes, behaviours and skills. This book gets straight to the nitty-gritty of the diverse range of topics of dementia, and refreshingly has no sense of ‘me, me, me’ coming from the authorship. Can you learn as much about dementia through other routes? My answer is: definitely not; but it’s true that you should learn as much as you can about dementia from anyone or anywhere, particularly from other leaders living with dementia. Is it a book you should at some stage meet in your exploration of dementia: I’d humbly submit, definitely.

Dr Shibley Rahman

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