Drawing on my lived experiences, I explored the daily challenges faced by those diagnosed with dementia. By challenging the notion of Prescribed Disengagement®™, I hope to offer a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can more positively support people post diagnosis to do this.
Love them, or hate them please feel free to write a review here or on Amazon. My only request if you do, is please do not refer to me or other people with dementia as sufferers, even though we may and do suffer some of the time.
The Forewords for my first book were written by the late Dr Richard Taylor, Dr Shibley Rahman, and Mr Glenn Rees AM, Chair of Alzheimer’s Disease International. I was deeply moved and honoured Richard recorded this, and have added it below.
This book was co-authord with Associate Professor Lee-Fay Low from Sydney, and our dream for this book it is a ‘one stop shop’ for families and individuals facing a diagnosis of dementia.
We were deeply honoured Professor Henry Brodarty wrote this Foreword for our book;
“Dementia is never one person’s illness. Its ripples spread wide enveloping family, touching friends and bumping up against professional services and care. Dementia can be cruel – hard for those affected and sometimes even harder for care partners. When Alzheimer’s and other dementia came out of the cupboard in the late 1970s, lots of advice was provided for carers or caregivers (as care partners are commonly called) with support groups internationally focussing on them. In the last decade the voice of people with dementia is now being heard more clearly. In the past, the emphasis was on the negative which of course exists. Now we are hearing about how to live with the positive.
This book is unique! It stands out from the thousands of books that have been published on dementia. It is told from the viewpoint of a person who has been living successfully with dementia and a researcher interested in living well in later life and with dementia.
When Kate Swaffer was diagnosed with dementia before her 50th birthday she rejected the prevailing dogma of Prescribed Disengagement TM. She prescribed her own formula of engagement which includes writing – this book is just one of her contributions, studying for her PhD and advocating. And when Kate is not travelling to Geneva to talk to the United Nations or to a conference, she is a wife and a person who wants to enjoy life. In living with dementia, Kate has developed strategies on how to cope with her disAbility. We can all benefit by learning from her.
Associate Professor Lee-Fay Low has a wealth of experience working first as a nursing assistant in residential care, as a clinical psychologist and as an academic researching dementia. Lee-Fay is creative and empathic. She is on a mission to put fun back into life for seniors and especially for people with dementia. It was Lee-Fay who led the SMILE study which demonstrated that humour therapy could reduce agitation and improve depression and quality of life for residents of nursing homes who had dementia and were rated as behaviourally disturbed. It was Lee-Fay who spearheaded a dance intervention in nursing homes. It was Lee-Fay who conceived and evaluated a program for community workers to positively engage older people receiving community care.
With such a dynamic duo of authors you can expect a book that is constructive and upbeat. But it’s not Pollyanna! It’s realistic and tells it as it is. The difference with this book is that Kate and Lee-Fay offer strategies and solutions. Their account is practical. It takes the reader step by step through the basics and then outlines different issues from diagnosis to legal issues to incontinence. You, the reader will learn about the differences between dementia, Alzheimer’s, Lewy body disease and frontal lobe dementia. You may have had questions about the different drugs for Alzheimer’s and the latest “miracle cures” that regularly appear in media. Does coconut oil work? What are the scams? Does exercise help? Does computer cognitive training work beyond the computer? What is the best diet? When should I arrange Enduring Power of Attorney? How is Power of Attorney different to Guardianship? Are pets good for you?
Dementia requires a partnership over the long haul between persons living with dementia and their care partner, family and friends, doctors, nurses, community services, residential care and sometimes palliative care. Swaffer and Lee describe what services are available. Currently services are set up to be reactive, only coming into play in response to problems or crises. I have long advocated for a system of key workers, who would guide the person with dementia and care partner through the complex often bewildering maze of services. Unfortunately we do not have such a system; yet this book is a personal guide on how to face the challenges that the ever-changing face of dementia presents over time.
I particularly liked the chapter on Living with Dementia. Communication is so important to how couples relate generally; in dementia it’s critical. There is a table in which Kate and Lee-Fay describe a care partner’s communications and actions and the reactions of the spouse with dementia and how these could have been handled better. Here is an example:
Care Partner: I had to tell a couple of shop workers when she wasn’t looking in case she annoyed them
Person with dementia: Are you telling people about me? I didn’t know that. I don’t like the idea of that. You should ask me first. I don’t care if you thought it best.
Care Partner (on reflection): Next time I will ask her permission before telling people about her dementia.
Person with dementia: Remember the phrase, “Nothing about me, without me.”
The book does not shy away from the sensitive issues that so often are avoided – all focusing on the viewpoint of the person with dementia. You and your care partner will be interested to read about the right to sexual desire and relationships, how a person with dementia and the person’s care partner handle transition from driving, how to compensate for declining competency when still working, how to handle holidays, how to manage Christmas and family celebrations. And what if you become irritated with your care partner and your care partner becoming irritated with you?
Kate and Lee-Fay beautifully describe dilemmas that arise. Over protective care partners who only want safety for their loved one with dementia but for themselves would prefer autonomy. How should a care partner (and residential care staff) react when a loved one with dementia starts to enjoy an intimate relationship with another resident in the nursing home? And how should a person with dementia (and friends) react, when a care partner starts an intimate relationship with another while his or her spouse is in care?
This book is an affirmation that dementia is a word not a sentence. A diagnosis is the beginning of a new phase, one that most of us fear, but one that can be met and challenged. There is so much that we – people with dementia, family care partners, friends, or aged care and health workers – can all do to maximise a positive life for many years.” (Henry Brodarty)
Learning life from illness stories can be ordered from the University of South Australia: learning-life-from-illness-stories-order-form. Edited by Peter Willis and Kate Leeson, Post Pressed, Mt Gravatt, Qld, 2012 177 pages, AUD $29.95 ISBN 978-0-646-57932-0
Foreword by the late Dr Richard Taylor for What the hell happened to my brain?: Living beyond dementia
- Jessica Kingsley Publishers
- Footprint Books – currently 15% discount
- The Book Depository – FREE DELIVERY WORLDWIDE
The books are also being stocked in local book stores such as Dymocks and Angus and Robertson, and if you ask, your local bookshop or library will get it in for you.
I was delighted to receive this review, from Michelle Harris | Dementia Consultant, Community & Residential Services, Bethanie, WA