How is it possible to engage with people who have profound dementia in order to provide sensitive spiritual care? These vital questions are at the heart of this slim volume by Richard Behers, a hospice chaplain based in Florida, who has worked for many years with people with end-stage dementia. When he began this work he soon discovered that his long experience as a community pastor was scant preparation for his new role. He had basic information about Alzheimer's disease and other dementias but no idea how to build a trusting relationship with people he was incapable of communicating with. Feeling a failure, he sought advice from experienced hospice chaplains who all suggested providing ministry through music. Music, specifically singing, proved helpful, but Behers discovered that there were other ways to engage people with advanced dementia. From this experience, he put together a Dementia Care Protocol which features a multi-sensory intervention, based on key principles and skills, designed to stimulate ‘awakenings’ and build trust. The purpose of this book is to introduce the reader to this Protocol and to encourage its use. The book is intended for chaplains of all faiths and other spiritual care-givers but may be useful to anyone starting work with people with late-stage dementia, or supporting care-givers.
The book is written in an accessible easy-to-read style designed to appeal to busy practitioners. The Protocol is underpinned by three ‘moral imperatives’. The first two are familiar: the personhood of people with dementia; and support and understanding for care-givers. The third, ‘the inseparability of the dementia patient from the common person’, is, as I read it, a call to enter imaginatively into the experiences of the person with dementia as an essential starting point for compassionate and informed care. Behers also stresses the importance of professional spiritual care-givers learning the language of health-care professionals, to better understand what is happening to the person with dementia and to communicate effectively within the multi-disciplinary team.
The ordering of the material is puzzling. Chapter 1 describes different kinds of dementia and illustrates the potential of the multi-sensory intervention in various challenging situations. Chapter 2 outlines an eight-session programme designed to introduce the Dementia Care Protocol into theological education settings. The author insists that training in dementia care should be a standard element in education programmes for ministers of all faiths. Chapters 3 and 4 provide, respectively, questions and answers about using the Protocol and a testimonial to its effectiveness. A systematic account of the Protocol only appears in Chapter 5. This includes detailed advice on body language and presentation and how to communicate with individuals with profound dementia using simple photographs, aromas, music, affirmations of personal worth, tactile objects and symbols. The reader may find it helpful to start with this chapter to make sense of the earlier material. Examples of simple photographs are also available from the publisher's website.
The author finds a powerful image for the lost or abandoned soul of the patient with end-stage dementia in Van Gogh's painting of ‘The Church at Auvers’ (pp. 106–7). He notes the paths leading towards and around the church but none to the church and, significantly, no church door. For me, this image also points to limitations in this text. Despite the inclusion of secular songs and tactile objects, there is a tacit assumption that the reader will be working with individuals who have been practising members of Christian or other faiths. There is no explicit discussion about providing spiritual care to people with dementia who may be lost but not lacking a church door; e.g. individuals who see themselves as spiritual but not religious. Similarly, although the multi-sensory intervention is adaptable for use by all faiths, the experiences of non-Christian chaplains and patients are absent. Including a diverse range of voices would have made this a more credible multi-faith resource. Finally, references have been kept to a minimum in keeping with the easy-read style, but this will limit its usefulness for education and training programmes.
This is a welcome, practical and positive introductory resource for busy chaplains and other spiritual care-givers. However, the reader will need to look elsewhere for developed explorations of dementia and spirituality with an explicit evidence base, or for alternative resources designed to support culturally sensitive spiritual care for people with profound dementia.