My review of 'What the hell happened to my brain?', with a response from the author Kate Swaffer

Image used with permission from Kate Swaffer

Image used with permission from Kate Swaffer

There are few people in this world I admire more than Kate Swaffer.

She is an exceptional woman. She is the chair, CEO and co-founder of Dementia Alliance International, a published author, blogger, academic, advocate, activist, student, mother, wife ... and she also happens to have a diagnosis of dementia!

As a fellow Adelaidean, I have been interested in her work for a while now, and have found it to be a constant source of inspiration for my own work. In 2016, she published her book 'What the hell happened to my brain?: Living beyond dementia'. I just love it. I have read it cover-to-cover twice and often revisit various chapters as I feel so inclined. I felt compelled to write a review of this book, with the aim of spreading the word about how wonderful it is, and how it has changed my thinking so drastically.

In the spirit of 'Nothing about us, without us', I invited Kate to write a reply to my review of her book. She gratefully accepted. I am so happy with the way this turned out. I hope you can get a sense that this represents a conversation (albeit a very considered and formal one) between Kate and me - from Kate's book, to my review, to Kate's response. We will, no doubt, continue this conversation into the future. We invite you to join the conversation!

To be cited as: Young, J. & Swaffer, K. (2018). Book Review: What the Hell Happened to My Brain by Kate Swaffer. Dementia 0(0), 1-4.

 http://journals.sagepub.com/home/dem

Kate Swaffer, What the Hell Happened to My Brain?: Living Beyond Dementia.  Jessica Kingsley Publishers, London, UK, 2016; 390 pp. ISBN: 978-1-84905-608-3, $37.99, paperback

Australian advocate and activist for persons with dementia, Kate Swaffer, writes with dignity and grace about her experiences of living with a diagnosis of younger onset dementia. Swaffer skilfully integrates original poems, excerpts from her blog (https://kateswaffer.com/daily-blog/), reflections on current policies and practices, discussions of theoretical models of dementia care, and personal accounts of key events in her own experience of dementia. She exposes critical issues in the current management of dementia from the perspective of someone living with the syndrome.

Swaffer wrote this book for a wide audience; for people living with dementia, for their families, for care professionals, for researchers, for policy makers, as well as for laypeople interested in understanding more about what it is like to live with dementia. The book is comprised of 38 short chapters, in each of which Swaffer addresses various poignant aspects of her experience with dementia. Each chapter can reasonably stand alone, with many of the key themes revisited frequently throughout the book (a feature that Swaffer recognises is likely indicative of her own challenges in remembering what she wrote previously). Readers with memory difficulties may find this feature supportive of their engagement with the text. Each chapter is short and digestible, and does not assume knowledge of concepts discussed in previous chapters. The book is also a valuable resource in dementia care education and training because each chapter can be used to stimulate discussion about multiple crucial aspects of the dementia experience.

While reiterating the current relevance of popular concepts in dementia care (e.g., person-centred care, consumer-directed care), Swaffer weaves multiple original and novel concepts throughout chapters. One of the most engaging and resonant concepts is ‘Prescribed Disengagement®’ (discussed in detail in Chapter 16). Swaffer argues that upon diagnosis many people with dementia are encouraged by health professionals and service providers to disengage from paid work or study, to plan for inevitable decline (becoming familiar with aged care and making end-of-life plans), and to enjoy the limited time they have left. This ‘advice’ is what Swaffer calls Prescribed Disengagement®. She challenges this notion, instead calling for a positive perspective that promotes the therapeutic benefit of ongoing engagement in activities that are meaningful to the person with dementia. Throughout the book, Swaffer describes the many ways she maintains positive engagement, such as through ongoing tertiary education and regular contribution to her personal blog, both of which are relatively novel and innovative interventions.

Swaffer’s discussion of the importance of involving individuals with dementia in advisory and advocacy roles is particularly significant for policy makers and care providers. Swaffer problematises the lack of representation that individuals with dementia have on local, national and international dementia boards, relating the underrepresentation to a misalignment with the popular dementia adage: ‘Nothing about us, without us’. Swaffer describes her role in founding the Dementia Alliance International (DAI; www.dementiaallianceinternational.org/) as another method by which she deliberately rejects Prescribed Disengagement®.

Another novel concept that Swaffer introduces is that of the ‘Back-up Brain’. In chapter 23, Swaffer challenges the automatic assignment of ‘caregiver’ and ‘care recipient’ roles that so-often occurs. Swaffer asserts that the language commonly used to describe partners, family members, or friends of a person with dementia inherently reflect a power differential, and potentially strip both parties of their multiple other roles (i.e., as husband/wife, son/daughter etc.). Swaffer suggests a reconsideration of the language used to describe family members. In her family, she adopts the term ‘Back-up Brain’ (or BUB) to refer to her husband. She describes how this subtle change in language has significant implications for how she views herself, of how her husband views his role, and of how they negotiate the challenges imposed by dementia.

Swaffer also unapologetically confronts taboo subjects. She writes of the shock, loss and grief associated with her dementia diagnosis, the impacts of the dementia on her young children and husband, her thoughts on death and dying, and the impact of institutionalisation and restraint on basic human rights. She writes in a way that is sensitive yet assertive. Such a balance could only be achieved by someone who understands deeply what it is like to have a diagnosis of dementia, and has experienced its effects first-hand.

Swaffer’s book helps breakdown stereotypes of dementia (e.g., ‘living death’), and presents alternative views and approaches to living, surviving, and thriving beyond dementia. In chapter 38, Swaffer provides a list of her current professional activities as ‘proof’ that her diagnosis has not been taken as a prescription for disengagement, thereby reinforcing the important take-home message that people with dementia can live beyond their diagnosis, and can continue to engage meaningfully in their communities.

Finally, an appendix provides a brief summary of dementia prevalence, dementia types, and common treatments, as well as a list of resources such as support groups, web links and books. Swaffer has collated many valuable resources for people living in Australia and internationally. Swaffer has written a remarkably useful and unique book. She writes with a vulnerability, assertiveness, generosity and authenticity that demands widespread attention. I highly recommend this book to anyone seeking to gain an insight into how living beyond a diagnosis of dementia can be achieved.

Jessica Young

Flinders University, South Australia and Western University, Ontario, Canada      


Author response:

Following this surprising but also very appealing invitation to respond to Jessica’s review of my book, one that I did not know was going to be so positive before I agreed to respond, meant I have not only had to cast my eyes over my own book (again), I have had to reflect deeply on what I wrote. I was elated that Jessica took the much spoken, but too often still not acted upon motto, “nothing about us, without us” so seriously. Unlike a blog, a published book cannot be edited, modified or deleted, and finally seeing this book in print was quite nerve-racking and somewhat overwhelming. This was not so much because I had published a book, which in itself was exhilarating, but because perhaps I may not have written clearly enough to explain to others what it was like (for me) to be diagnosed and live with dementia. It has also caused me to reflect more deeply on the value of book reviews in general.

To begin, I want to respond to this comment: Such a balance could only be achieved by someone who understands deeply what it is like to have a diagnosis of dementia, and has experienced its effects first-hand.” Reading this was incredibly restorative for my soul, as like many others who are living beyond dementia publicly, I have often been accused of not looking like I have dementia, of my doctors being wrong, and I have even accused of being a medical fraud. Jessica is correct; unless you have been diagnosed with dementia, you cannot know what it is like. I thought I did, having been a nurse in dementia and a care partner of three people who have died from dementia, but until my own diagnosis, in reality, I had no idea, and realise how arrogant and wrong it was to have assumed that. There are many more people with dementia writing books and blogs now, and slowly, people without dementia will begin to understand more deeply what it is really like, and what is best for us, from our individual perspectives.

I have had some really poignant feedback about my book, and the most meaningful has been from people with dementia who have said things like “Thank you. You have written my story; it felt like you were writing about me” and “your book has given me hope that I can live with dementia much better than anyone else told me was possible”. That is exactly how I felt when I first read excerpts of the late Dr Richard Taylor’s writings, and which started me on this pathway of public discourse on dementia. Comments from others diagnosed have been positive and significant (to me), and have encouraged me to keep writing. But also hearing from care partners, professionals and academics has been encouraging, as many have said this book has helped them to better understand the lived experience of dementia, and has perhaps more importantly, has helped them more positively improve their care of a person they support personally, or their clients with dementia.  

However, it is important for me as a writer to remember that reviews need to be read with perspective, as they are just someone else’s opinion, in the same way my book is based on my own experience and personal opinions. In contrast to Jessica’s positive review, I’ve also read a negative review of my book, saying it was too repetitive, and at times, seemed too ‘instructive’, but generally I don’t even look for or read reviews. I write for my own healing, to help my family and friends better understand my world, and with the hope I may increase understanding of dementia from the inside out. My book, my feelings, are all based on only one person’s perspective, but of course, I am glad that Jessica and others have found it to be useful and important.

Finally, this particular review feels like it was sent by Angels, as I have wanted to give up my advocacy and activism almost every day in 2017, and have found it very difficult to overcome the increasing disAbilities of dementia, or to cope with the stress caused by unkindness. Jessica’s detailed appraisal of how this book has helped her understand more deeply the lived experience of dementia was profoundly and personally meaningful to me, and her final comment brought me to tears: Swaffer has written a remarkably useful and unique book. She writes with a vulnerability, assertiveness, generosity and authenticity that demands widespread attention. I highly recommend this book to anyone seeking to gain an insight into how living beyond a diagnosis of dementia can be achieved.”

Most people talk the talk, but rarely walk the talk.

Thanks for walking the talk, Jessica!

Kate Swaffer

PhD Candidate, University of Wollongong / Chair, CEO & Co-founder of the Dementia Alliance International


Many thanks to the publishers for permitting both Kate and me to post a copy of the pre-publication manuscript to our respective blogs (apologies for a few minor typos, these are not allowed to be removed). The publishers request that the review is published to our blogs only. You are welcome to share a link to this blog post, and/or to Kate’s blog post, but please do not publish this text elsewhere. 

Jessica Young2 Comments