Reading this book made me think of paradigms and cultures. The old paradigm is largely biomedical and the culture is essentially custodial. The new paradigm is psychosocial and spiritual. The new culture is one that stresses personhood. If we are in the midst of a revolution, it is a slow one. It is also problematic, because the new paradigm cannot separate itself from the old, even if it can shift; and the new culture of dementia care still has to face the problem that, whatever the emphasis on autonomy in western culture, when it comes to conditions such as dementia the imperative is often safety, which in effect entails custody. The edited collection of papers is firmly based on the side of the new paradigm and culture, which according to Jones et al., ‘involves understanding persons with [Alzheimer's disease] as ‘behaving [relatively] normally in a “perceptually abnormal” world’ (versus the more common notion of persons with dementia ‘“behaving abnormally” in a normally perceived world)’ (p. 60). This re-orientation with respect to the person with dementia is typical of the new way. Similarly, the description of an Alzheimer café is instructive and welcome with its focus, as described by Thompson, ‘on improving and maintaining the quality of life for the person with dementia, their carers and family by providing opportunities to share experiences and be part of an accepting and open environment’ (p. 297).
Yet both these chapters, laudable as they are in terms of their aspirations, demonstrate weaknesses that often seem to attach to the new way. The first, in a long chapter on visuo-perceptual deficits, presents a pilot study that purports to demonstrate how environmental changes decrease certain problematic behaviours and also increase social interaction. I have little doubt that the environmental changes were beneficial but except for a chapter that makes much use of biomedical details about visual pathways, it is decidedly lacking in scientific rigour in its search for cause and effect. This would not have seen the light of day in any peer-reviewed journal with respectable scientific credentials. In the similarly detailed chapter on the Alzheimer café, a qualitative study is presented to show what a positive experience it had been. Again, I am sure it was a huge success. My complaint is not that we should ignore the meaning and experience of attending the café, but that the material is presented as an evaluation of the service. As such, it was relatively insipid. I am little the wiser concerning the big new idea.
This is the fourth volume of an edited series. Its disparate collection of chapters is large in terms of word count but small in substance, although much of that is on the side of the angels. We do need to think more about how people with dementia see the world; we do need to find better ways to support them and their carers. The emphasis on the psychodynamic and psychoanalytic seems timely. Bowlby's attachment theory (as well described by Miesen) is, I am sure, useful and very important as a way to understand the losses around dementia. Some of the chapters were gems. I was interested in Cees Hertogh's incisive thoughts on Dutch nursing-home medicine. He rejects the dichotomies of ‘cure versus care and curative versus palliative’ (p. 229). Instead he emphasises the ‘functional consequences of disease’, where the objectives ‘primarily involve attempts to restore, improve and maintain the best achievable level of functional autonomy’ (p. 229). This moves firmly in the direction of the new culture and paradigm, but the movement neither ignores nor rejects the continuing reality of the old. For instance, his talk of ‘maintenance rehabilitation’ (p. 236) is clearly applicable to people with severe dementia even where the context is custodial. He states, ‘a treatment plan will always comprise these two cohesive components: rehabilitation treatment … and support in those functions and activities where this is no longer possible’ (p. 237).
Another gem is the chapter by Small et al. on end-of-life care. It provides not only a useful overview but also a deep analysis of the issues. The authors' view is broad and they successfully raise the political challenge that is required if we are really to accomplish the revolution: ‘ … there is also a need for the active agency of committed individuals, driven both by a critique of existing practice and a vision of what can be better’ (p. 386). So despite my critical comments this book is worth dipping into. To my mind the most memorable sentence came from the chapter on humour in dementia (by Blake et al.), which quotes Victor Borge: ‘Laughter is the shortest distance between two people’ (p. 172).