Dementia is an irreversible brain disease in which the sufferer, usually an older person, experiences progressive decline in cognitive functioning including memory loss, difficulties with language, and confusion. The prognosis is dismal and there is no curative treatment currently available. People with dementia usually lose independence and spend their final years in residential care, withdrawn from the world. At least, that is the dominant narrative of dementia. Within the dominant narrative there is little room for an experiencing, engaging individual who actively participates in the world and seeks meaning in their day to day life. As a counter to this view of dementia as a disease of progressive loss, Elizabeth MacKinlay and Corrine Trevitt use spiritual reminiscence as a framework to explore dementia, freed from the constraint that people are defined by their score on a standardised test of cognitive functioning. The book is informed by MacKinlay's experience as an Anglican priest, and by both authors' academic backgrounds, in theology (MacKinlay) and ageing and pastoral care (Trevitt). In the sometimes severely secular world of health care spirituality is frequently trivialised, either by its singular identification with organised religion, or with its treatment as something ethereal and nebulous. The writing of MacKinlay and Trevitt restores spirituality to something bright and meaningful, a tonic for the pessimistic views that too often characterise the life of individuals with dementia.
Finding Meaning in the Experience of Dementia is divided into three parts, which allow the authors to progress through and explanatory background, to current and alternative understandings, research findings about the experiential world of the person with dementia, and an outline of the practice of spiritual reminiscence. Part one provides an introduction to the framework of spiritual reminiscence, contrasting that framework with an outline of generally accepted models of dementia. This background provides the basis for an exploration, in Part Two, of the complex experiential world of dementia expressed in the words of people with various levels of the disorder. The mood is hopeful and optimistic. Always realistic and accepting of the impairments of memory, orientation, language and other cognitive functions, the authors are never overwhelmed by these changes. They seek–and find-the human connection and the meaning expressed. MacKinlay and Trevitt treat the experience of dementia as an opportunity to find new meanings that may have remained masked by the easy participation in the familiar world of words and ready-to-hand memories. Part Two ends with a theology of dementia, an exploration of dementia in terms of MacKinlay's Christian faith. While this chapter will obviously be of interest to Christians, MacKinlay's theology is ecumenical, almost existential. Her faith approach allows the person to speak, to communicate their experience to others and perhaps in doing so to extend their self awareness. The third and final part of the book focusses on application of spiritual reminiscence to the lives of people with dementia. This section is replete with examples of research dialogue which show both the humanity of the individuals, and of their interviewers as they reach for connection. The book closes with some advice about program design and thoughts about how change to a spiritual model of dementia can contribute to empowerment of those affected.
Finding Meaning in the Experience of Dementia is a timely publication as health and social services respond to the ageing population and the growing prevalence of dementia. The search for pharmacological, genetic, financial and practical responses to dementia should not blind us to the humanity of people with dementia. The message of MacKinlay and Trevitt is that people with dementia should not be defined by others' views of their deficits and losses, not by the 'burden' imposed on caregivers, but by what they still are, and their continued search for meaning.
© 2014 Anthony O'Brien
Anthony O'Brien, RN, MPhil is a lecturer in mental health nursing at The University of Auckland, New Zealand, and a clinical nurse specialist in liaison psychiatry at Auckland Hospital.