In this, his third collection on spirituality and ageing, Albert Jewell acknowledges the seminal influence of the late Tom Kitwood upon raising awareness of the spiritual needs of persons with dementia. He reminds us just how cruel and impersonal dementia care could be only 20–30 years ago. Improvements in quality of care over the last quarter century owe much to Kitwood's and others' zeal to focus more on the person with dementia and not only on the disease itself. Many of the authors of the individual chapters also recognise Kitwood's influence. His is the most referenced name throughout the collection, followed by the philosopher Martin Buber whose emphasis on the distinction between authentic (‘I–Thou’) and self-serving (‘I–It’) human relationships was itself acknowledged by Kitwood. Personhood, relationship and spirituality are closely intertwined concepts.
The book engages with the important conceptual issues that relate to dementia, especially in the later chapters. These have been written by practitioners – doctors, social workers, chaplains and other religious ministers – who have realised the importance and value of philosophical enquiry into dementia and personhood. They also address the implications for care-givers of living up to the realisation that – in John Swinton's words – ‘dementia is as much a relational disability as it is a physical or neurological one’ (p. 119). The editor has wisely placed these important but often difficult chapters at the end, while the first two parts of the book deal with more easily accessible accounts of first-hand experience of dementia, both by sufferers and carers, followed by accounts of training, practice interventions and other attempts to improve quality of life for persons with dementia.
Each reader will benefit differently from the various chapters according to their present needs for understanding: every chapter has something to offer. Just a few examples can be given from my own personal reading of the book. Marianne Talbot, writing as a carer for her mother, brings home vividly just how distressing the experience of respite care can be for both parties when it is negligently conducted, as too often appears to be the case. By contrast, good quality residential care, although initially more feared, was a liberation for both her and her mother. Elizabeth MacKinlay provides an intriguing account of the challenge she took on in accepting the invitation to be a spiritual guide to a person entering ‘the journey into dementia’. John Killick's choice of insightful quotes illuminates his consideration of how persons with dementia can teach us to live differently as ‘a friend of time’. He cites a US social worker's inspiring encounter with one client: ‘like a Zen Master he exacts my conscious attention to each present moment’ (p. 54).
Among the training and practice chapters, I was struck by Harriet Mowat's introduction of the role of spiritual care-worker and the kind of self-monitoring necessary to ensure spiritual care really does take place. Susan McFadden focuses on play as a spiritual activity which can break down barriers in relationship. She cites Buber: ‘Spirit is not in the I but between I and You. It is not like the blood that circulates in you but like the air in which you breathe’ (pp. 101–2). I was particularly impressed with the accounts of good quality spiritual care in residential homes and its incorporation into guidelines for mealtimes and bathing. Margaret Goodall of MHA Care Group provides a valuable account of one particular organisation's policy on chaplaincy for those with dementia.
However, it was above all the later chapters that took my attention. We have to learn to defend older persons from those who argue that life with dementia is not worthy of human dignity. This is an acute challenge to those of us who have been brought up to value reason above all other human faculties, and to privilege continuity of memory as a criterion of being the same person. Julian Hughes has done more than most psychiatrists to challenge these views in his publications and in the last chapter of this book he sets forth what he describes as a ‘situated embodied view’ of the person with dementia. Persons both with and without dementia are intrinsically interconnected with others and possess bodies that express their emotions and their spirit. He cites Heidegger in arguing that our very existence, again with and without dementia, is a source of wonder and calls for others' ‘solicitude’ because we are in essence ‘beings-with’ one another. In a congruent chapter, Clive Baldwin goes beyond Kitwood in drawing on other philosophers of relationship besides Buber, such as Emmanuel Levinas. We become human by responding to the needs of others, and thereby abandoning our self-focused possession of the world. Ultimately we cannot become a ‘self’ on one's own. Baldwin as well as other authors in this collection raise the possibility, acknowledged by Kitwood, and also attributed to William Penn, that dementia can also involve growth as a person. There is much in this book to make one reconsider deep-rooted prejudiced thinking about dementia.