BOOKS BY AUTHORS WITH DEMENTIA
Memory's Last Breath
by Gerda Sauders (2017)
"My book is for this: to add my personal story to the body of science about dementia already accumulated by the lifetime efforts of neuroscientists, neuropsychologists, other medical researchers and healthcare providers.
My book is for you: whether you or someone you love has dementia, or you're a medical professional, or a person searching for your own self after a huge life change, or just someone plain curious, who - like me - feels that the more you know, the better you are able to love." (p. xi)
At the age of 61, University of Utah Professor Gerda Saunders was diagnosed with dementia. Upon resigning from her work, she decided to keep a journal of her experiences. She called the journal, 'Field Notes on my Dementia'. Memory's Last Breath combines excerpts from the journal with autobiographical accounts of Gerda's fascinating, adventurous life.
One of the most interesting parts of this book, I found, was Saunders' exploration of the flexibility and transience of memory. For Saunders, memory is not a perfect chronological recalling of events, as it is often thought to be. Memory, she shows us, is malleable. It is vulnerable to other people's influence. It is imperfect, is constructed and reconstructed in our minds and, at times, has been known to fail us all.
I adore this book. I would highly recommend it. Saunders has lived an exceptional life thus far, and continues to do so beyond her dementia.
Saunders frequently speaks publicly throughout the US and regularly posts to her blog. RadioWest Films has created a BEAUTIFUL film series about Gerda. This book also inspired a dance performance by New York-based Stefanie Nelson Dancegroup.
by Helga Rohra (2017)
In this book, German single mother and interpreter (able to speak 6 languages!) Helga Rohra gives an account of her experience as an activist for people with dementia. She also happens to have a diagnosis of Lewy body dementia.
Helga reiterates many of the points made by other activists but also provides a unique perspective on language issues in particular (of special interest to me as a Speech Pathologist). I really like the discussion of her experience of language changes, as they relate to her work as a translator. Just fascinating!
She also has written a wonderful chapter (Chapter 20) about why we should not be comparing adults with dementia to children (this will very likely be the focus of my next blog post!).
This book takes a similar form to 'What the hell happened to my brain?' by Kate Swaffer, in that each short chapter relates to a different issue in dementia care. This short book (approx. 150 pages) is a nice introduction to this 'genre'.
Afterword by Dr Elisabeth Stechl and Prof Dr Hans Foerstl.
In writing this book, Rohra was assisted by Falko Piest, a research Associate of 'Dementia Support Stuttgart'. Helga Rohra is a current member of the European Working Group of People with Dementia.
What the Hell Happened to my Brain?: Living Beyond Dementia
by Kate Swaffer (2016)
Kate Swaffer is an Australian advocate and activist for people with dementia. Reading this book sparked my (now ravenous) hunger for reading books written by people with dementia. This book COMPLETELY changed my perspective on how I think about dementia, about care partners, and about rehabilitation and care. It is a must read!
There are so many important messages in this book, that it is hard to write a summary to do it justice. So I will describe 2 of the messages that I found most useful:
People with dementia need to be engaged in the discussions that shape care provided to people with dementia. So often a diagnosis of dementia is interpreted as a marker of complete incompetence and incapacity, forbidding people with dementia to be involved in their own care. This is a violation of human rights, and we need to put all measures in place to ensure that people with dementia have a say in policy and procedures that shape their everyday lives and their care.
'Prescribed Disengagement' (a trademarked term, coined by Swaffer) is not acceptable. Kate challenges the perspective that a diagnosis of dementia necessitates a disengagement from the activities that give our lives meaning and purpose. Instead, she promotes the integration and ongoing engagement if people with dementia in their communities.
I will let you explore the rest of her ideas when (not if) you read this book.
Forewords by Dr Richard Taylor, Glenn Rees, AM and Dr Shibley Rahman. Appendices include a brief summary of dementia (as a diagnosis), and a list of resources for people with dementia.
Kate writes regularly to her blog and is the co-founder of Dementia Alliance international (DAI), a not-for-profit organisation run by people with dementia for people with dementia. DAI provide incredible services to people with dementia as well as education to caregivers and researchers alike, all with the perspectives and experiences of people with dementia at the fore.
Nothing About Us, Without Us! 20 Years of Dementia Advocacy
by Christine Bryden (2016)
This book is essentially a collection of speeches that Christine Bryden has delivered over her 20 years as an activist and advocate for people with dementia. Each speech is prefaced by a short description of the context in which it was given. PowerPoint slides are presented, each with (what I assume is) the accompanying script of what Christine said as each slide was showing.
Christine was diagnosed with dementia in 1995 at the age of 46. She was one of the first people with dementia to be invited to speak at an Alzheimer's Australia (now Dementia Australia) national conference in 1999. Since then, she has traveled the world as a spokesperson for people with dementia.
As Christine has spent many years fighting against a system resistant to change, she does reiterate the same or similar points in many of her talks. Having said this, the book provides a fascinating record of how the focus of Christine's advocacy has changed and evolved over time (from 2001-2015), particularly with her focus on spirituality and dementia in the more recent years.
I would recommend reading ' Before I forget' by Christine Bryden (see below) BEFORE reading 'Nothing about us, without us!', as it provides essential context to many of the speeches presented in this book.
Christine is a founding member of the Dementia Advocacy and Support Network International (DASNI). Her personal web page is an invaluable resource. Short videos of many of her talks are linked to this page, as well as links to TV and newspaper segments, and lists of resources for people with dementia. She is amazing!
Before I Forget
by Christine Bryden (2015)
Of work by Christine Bryden that I have read, this is the most autobiographical. It is a remarkably open and honest account of her life: of broken relationships, of eating disorder, of moving from England to Australia as a young woman, of motherhood, of being a woman in the workforce, or domestic abuse and heartbreak, of getting into dementia advocacy, of becoming famous in Japan, and of finding true and honest love later in life.
In this book, Christine demonstrates how significant life events shaped the person she is today, and ultimately gave her the skills and resilience to become an advocate for people with dementia.
Appendices include 'Advice', 'A note on the future of dementia care' and 'acknowledgments'
See above (under '20 years of dementia advocacy') for author details and links.
In addition to 'Nothing about us, without us' (see above), and Before I Forget, Christine Bryden has written 'Dancing with dementia' (2004) and 'Who will I be when I die?' (1998). I will review these in time.
On Pluto: Inside the Mind of Alzheimer's
by Greg O'Brien (2014)
American journalist Greg O'Brien writes of his experiences of being a caregiver to his parents who both had dementia, at the same time as dealing with his own diagnosis of Alzheimer's dementia.
Throughout the book, he uses 'a trip to Pluto' as a metaphor for his journey with Alzheimer's dementia. He writes:
All the darkness in the world, my mother taught me, cannot snuff out a single candle. I know that darkness. It's a place I call "Pluto", in allegorical terms, a reference from my early days as an investigative reporter when I went deep "off-the-record" with sources. "We're heading out to Pluto," I would say, "where no one can see you or can hear what is said."
The Pluto metaphor still works for me, more than ever, as I seek the peace of isolation and pursue the urge to drift out as Alzheimer's overcomes at intervals. Pluto is the perfect place to get lost... Over the years, I've taken close family, colleagues, and clients "out to Pluto" to discuss off-record unmentionables of life in a place without oxygen. One day, like my grandfather and my mother, I won't return from this dark, icy place; when that happens, I want family and friends to know where I am. (p. xviii-xixx)
This excerpt is a little bleak, indeed, but the book in its entirety is anything but bleak. It is many things. It is at once hilarious and utterly devastating. O'Brien is pragmatic and very dry in his humour, yet sensitive and compassionate. I quite literally laughed and cried reading this book, at times simultaneously. O'Brien's unique perspective, as a care partner and person with Alzheimer's, is novel and insightful. The writing is beautiful. It has a similar feel to 'Memory's last Breath' as he skillfully weaves together autobiographical and historical accounts with his current, oftentimes critical, perspective on dementia and Alzheimer's.
Foreword by Lisa Genova (author of 'Still Alice').
An epilogue by David Shenk, author of 'The Forgetting: Portrait of an epidemic'. Shenk interprets O'Brien's story as a call for further research in this area; a 'call to action', so to speak.
For those of you who prefer film, O'Brien also stars in 'A Place Called Pluto', by acclaimed documentary producer Steve James.
Just Love Me: My Life Turned Upside-Down by Alzheimer's
by Jeanne L. Lee (2003)
In this deeply personal narrative, Jeanne L. Lee shares intimate insights into her life before and after a diagnosis of dementia. Lee candidly describes her early life, including all the ups-and-downs of sexual abuse, three marriages, five children, depression, and alcohol addiction. She integrates reflections and recounts from 7 years of journals or, in later times, tape-recordings, beginning when she first started noticing changes to her memory that severely affected her work. At 49 years old, Lee was given an initial diagnosis of stress and alcohol-induced dementia. She was later diagnosed with early-onset Alzheimer’s dementia.
Lee provides one of the most honest and detailed accounts of the daily stresses of memory loss, and of the disarray that it caused, and continues to cause, in her life. She writes of the importance of seeking meaningful work despite dementia, of peer support (of which there was none in her hometown in Hawaii when she was first diagnosed), and of building meaningful relationships with doctors (and avoiding the “pill-pushers”, as she calls them). As a speech pathologist, I was also really interested to read her reflections on the changes in her communication. She writes:
“When I was first diagnosed with dementia, the thing that caused me the greatest shame, and what really drove me into hiding, was my problems with language. I couldn't find the word. It was like I haven't gone to school. I do find myself using ten small words to try and explain one big word that I couldn't remember... that was really embarrassing.
I'd be talking to somebody and forget a word, and have to put it in something else that really didn't make sense, or I'd be talking to them and forget what I was talking about… Now I prefer not to have too many people around because of my difficulty with being involved in group conversation... So, groups are bad, but being alone for too long isn't good either, because I find myself getting disoriented and confused. The best for me is to be with one other person, and I'm able to carry on a pretty decent one-on-one conversation.” (p.31-32)
Later in the book, she courageously advocates for families to be more open about disclosure of sexual abuse, and to be aware the effect that it can have from generation to generation. She talks about the healing effect of her own disclosure, and how she hopes this will stop the “cycle of abuse secrets” in her own family.
Lee finishes with an inspirational encouragement to readers to live in the moment. She writes:
“Alzheimer's has that kind of effect on a person, because life as I knew it is over, and what that life-changing circumstance has caused me to recognize is that I have two choices. The same too, I now realize, that I've always had; I can grow or shrivel; I can be happy or unhappy; I can dwell in the light or in the darkness; I can live in love or in fear. They are all really the same two choices. And the exciting thing to me is that the choice is always mine alone; always has been and always will be. And that choice is right now… this moment. The choice we make in the moment creates our lives.” (p. 71)
Forewords by Valerie Brandon, M.D., and David B. Dameron, PhD. Afterword by Cliff Reid, who assisted with the writing of this book. Appendices include letters from family and friends, and an overview of the Dementia Advocacy and Support Network International (DASNI), by Carole Mylliken.
Jeanne L. Lee was one of the original members of DASNI, and is now a member of Dementia Alliance International.
Please feel free to contact me with recommendations! I am always looking for new books to add to the collection!
Reviews to come...