Foreword by Kate Swaffer, Chair Dementia Alliance International (@KateSwaffer)
It is my great honour and a real privilege to have been asked to write a Foreword for this very important book. When reading Shibley’s previous book, the first part of the title Living Well With Dementia initially irked me very slightly, as I knew he personally was not living with dementia. However, as I have come to know this gentle man, who is now a close friend, as well as a colleague and an academic in the field of dementia, I fully believe he was right to use that title.
That book, and this latest one are all about teaching others, including doctors and health care professionals, to empower and teach people like me, people who are diagnosed and living with dementia, to live well. It is also a book for people living with dementia and family carers, highly accessible, in spite of the narrative coming from a very impressive evidence based perspective.
This book, like the last one, is highly relevant and highly readable. We have, I believe, taught each other a great deal about dementia.
One might wonder why do we need to teach others it is possible to live well with dementia. From my personal experience and perspective, the current post diagnostic support begins with Prescribed Disengagement™, which supports aged care and dying, rather than living.
Shibley is one of the few health care professionals and academics who believes passionately this is not only possible, it is necessary for us to be treated with autonomy and without stigma. It is urgently required if the escalating number of new diagnosis of dementia is to be believed. He is often willing to speak up for things outside of the boundaries of what perhaps his colleagues or others might think are current practice; his deep concerns for the value of individuals, and his desire to support us [people with dementia] to live well, resonates throughout this book.
The over riding messages about living well, of our most basic of human rights, and of the legal perspectives relating to the treatment and care of people with disabilities, which includes people with dementia, recognises us as full and equal human beings as every other group of people. It instructs and teaches from a rights based perspective, with humanity and a deep and sincere interest in the well being of the person.
Whilst some might see it as a medical book, it does not medicalise the support of people with dementia. The discussions on autonomy, discrimination, prejudice, citizenship and stigma must be absorbed, not just read, and in the context of equality and living not just well, but living better with dementia.
He quotes me in chapter 5, “it is time all people with dementia and their families stood up for better advice and services that enhance well being”. It is my firm belief that this book does a great job towards achieving that. Alzheimer’s Disease International has a charter; I can live well with dementia. Dr Rahman is one of the very few who not only believes this is possible, but has chosen, quite often, to go against the tide and speak up for it. Thank you Shibley.
Co-chair and co-founder, Dementia Alliance International
Chair, Alzheimer’s Australia Dementia Advisory Committee
Co-chair, Alzheimer’s Australia Consumer’s Dementia Research NetworkForeword by Chris Roberts, Dementia Alliance International, Dementia Friend Champion
Foreword by Chris Roberts, living well with dementia, Dementia Friends Champion, Board member of Dementia Alliance International (@mason4233)
There are a lot of books out there on dementia but none as informative as this one.
It is an excellent follow on from Dr Rahman’s first book “Living well with dementia”. I read his first which we found a considerable help especially I have mixed dementia.
After reading it I had a thirst for more knowledge about the dementias and how I could live better.
This book has just done that!
It goes into great detail, using his academic knowledge and using the experiences of other caregivers.
More importantly he has used the experience of people who are living with dementia to explore different therapies and self help to achieve this.
It explores disability rights, dementia friendly communities, and even advocacy. It talks about some subjects hardly ever touched before. It’s a great guide for anyone exploring dementia for whatever reason bringing about discussions as well as factual information.
It is possible to ‘live better with dementia’ using this book as a reference to answer questions as to what is to come and how you can be involved in your own destiny.
I highly recommend this book as a great starting point on your journey after your diagnosis, aimed at those with a dementia, caregivers, families and for professionals – and for care homes.
It reminds us that there is a beginning and a middle before the end and, using every resource to hand, once you have read this book and explored therapies out there, you can live well and better with dementia.
I would like to thank Dr Rahman for bringing about such a useful book and for being a very good friend to my wife and me.
Chris Roberts, aged 53
Living well and better with dementia.
FOREWORD TO ‘Living better with dementia: looking to the future’ by Beth Britton, Freelance Campaigner, Consultant, Writer and Blogger (@bethyb1886)
It is an exceptionally difficult task to write a foreword that could add anything more to a book that is already packed full of the very best in ideas, examples and articulation of the essence of living better with dementia. The title is particularly apt, and I applaud Shibley for reasoning that the concept of ‘living better’ has an inclusivity about it that reflects some of the immense difficulties many people who are living with dementia, and their families, are going through.
I feel passionately that this book has huge potential to provide hope to people who are living with dementia and their families – hope, that alongside love, helped to sustain me and my family during my father’s nineteen years with vascular dementia, a period of time that included my teens and twenties. Having gone ten years without a diagnosis, the last nine years of my father’s life were spent in three different care homes before he passed away in April 2012, aged 85. My hope now is that his memory lives on through my work as a campaigner, consultant, writer and blogger.
During those nineteen years we faced some extremely traumatic times as a family. The stroke that left my father collapsed at home, the aftermath of his diagnosis and the search for care homes, alongside variable standards of health and social care, and my father battling with critical chest and urinary tract infections all had aspects of heartbreak and challenge about them.
Yet in the midst of great sadness and difficulty we unexpectedly found even more joy – indeed, sharing some of the positives from our experiences was my inspiration for beginning my D4Dementia blog which has subsequently led onto all the work I do now. Within this book, Shibley has devoted key chapters to some of the most important elements that enabled my father to live better, namely:
- Food and eating. For many years, with no teeth and eventually having to cope with dysphagia, my father had the best appetite in his care home.
- Art and creativity, which enhanced my father’s life immeasurably and proved to be far more effective than medications.
- Reminiscence and sport, both of which played a significant part in helping us remain connected with my father as a family through to the end of his life.
Vitally, I feel, Shibley also tackles some of the more taboo topics around dementia, most notably incontinence. My father became doubly incontinent in the aftermath of his largest stroke (the stroke that led to his diagnosis of vascular dementia), and lived with that incontinence throughout his nine years in care homes. For the person themselves, their carer(s) and family, shining a light on this difficult topic can only help to improve care and support.
I am also heartened to see Shibley including a chapter on ‘wandering’ and widening this out to look at the debates around GPS systems. My father was labelled a ‘wanderer’ just because he wanted and needed to walk, this despite the fact that in his earlier years he had led an active outdoor life as a farmer. Only when he was diagnosed with dementia did his life-long love of walking suddenly become labelled as ‘wandering’, something I felt was hugely disrespectful.
The need for dignity and respect runs throughout my work, and never more so than when highlighting the need for diagnosis to go hand-in-hand with appropriate, personalised post-diagnostic support that gives the person with dementia and their family the very best chance of living better with dementia. With this in mind, I am delighted that the largest chapter in this book is devoted to care and support networks, a topic that I know Shibley is very passionate about.
I congratulate Shibley on writing a book that brings together so many of the challenges facing people who are living with dementia, their families, and professionals from many different disciplines, and takes them forward in a critically thoughtful way. This is a book that truly points the way to a future where living better is a reality for everyone affected by dementia.