Reviewed by Rod McLary
The subtitle to this ultimately hopeful book is Finding our way back to compassion, hope and humanity implying of course that compassion, hope and humanity were lost somewhere along the way. This is the story of the 2017 review of the Oakden Older Persons’ Mental Health Service in Adelaide. The book’s author Duncan McKellar was a member of the review team ‘which took a deep dive into the unfathomable neglect and dysfunction’ of the service – and it is indeed a chilling and heart-wrenching dive that it took.
The Foreword is written by Barb Spriggs whose husband Bob was admitted to Oakden because of his complex and distressing symptoms caused by dementia. Bob’s experiences at Oakland – and the unrelenting advocacy by Barb and others – were the trigger for the South Australian government finally acknowledging the issues and setting up the Review Panel. As is so often the case in these matters, the courage to speak out and pursue what is right, demonstrated by a small number of people over an extended period of time, can lead to real change.
In structuring this book, the author was informed by ‘evocative autoethnography – a reflective research method that connects the personal with the cultural’ [14]. This approach allowed the author to set out how he arrived at Oakden in 2017. His story began in the 1970s when the author was a child growing up within the love of his family and specifically his grandmother. But behind that – and unknown to the then five-year-old author – was his grandmother’s growing memory loss and its consequent impact on what she was able to do. The author was told that his grandmother had ‘senile dementia’ and, although he did not fully understand what that meant, he did understand that, in some way, this made his grandmother ‘different’ and ‘other’.
The concept and process of ‘othering’ reverberates through the book as the author describes the impact of ageism and the marginalisation on those with dementia – a process which ultimately led to Oakden’s dysfunction and its neglect of the people who were placed in its care. The author’s personal experience of his grandmother with dementia was compounded by his mother’s depression and later her dementia, all of which, as the author says, ‘set the scene for how he came to be at Oakden in 2017’ [54]. But added to these familial experiences was his personal Christian faith and the challenges of sharing that faith within – at times – a church culture marked by ‘hubris-infused leadership’ [56]. There are parallels between hubris in the church and what can be found in many an organisation where sight of its real purpose is lost. The author was convinced that the way back was to reconnect with ‘simplicity, humility and compassion … creating cultures where it is safe to call things out when needed’ [57].
While Barb Briggs [who wrote the Foreword to this book] convinced the government to launch the review, there were many people and families who were traumatised by their experiences with Oakden. The author shares a number of these stories maintaining faith with the concept of connecting the personal with the cultural. The stories are heartbreaking and together explicitly demonstrate the process of ‘othering’ which marginalises the aged and infirm.
But of course – as the author finds out – the review and its outcomes were ‘a piece of improvisation theatre played out between politicians and their advisors, and the unremitting media’ [164]. And there were casualties – the minister and the premier and government – as the story played out in public. Oakden was to be closed and the residents transferred to Northgate House – a refurbished facility.
The title of Part 3 of the book echoes the subtitle of the book – Finding Our Way Back – and it sets out how the author and others reformed the service. Among other things, an oversight committee was formed to ‘offer wisdom, speak freely, and ask tough questions’ [185]. Again, reflecting the author’s research method of connecting the personal with the cultural, some of the processes instituted at Northgate allowed staff to share their stories and this in itself brought about change – and led to the stories of people in their care.
The most critical lesson from Oakden – according to the author – is that ‘what matters most are people. How we treat them and how we make them feel’ [181].
The author concludes this at times heart-breaking but also hopeful and positive narrative about how simply reconnecting with simplicity will bring about significant and long-lasting change. The book’s final words say it all – At the centre of everyone’s story is the need for compassion, hope and humanity – for love [264]. This is a book which should be essential reading for all those in the human services industry – and all those who care for others.
Duncan McKellar is a psychiatrist who specialises in the care of older people. He is the co-creator of A Box of Memories – a musical written with his daughter about a family dealing with dementia.
An Everyone Story
[2024]
by Duncan McKellar
Wakefield Press
ISBN 978 192304 217 9
$34.95; 264pp