Abstract
The opening paragraphs of this book offer an analogy that likens people living with dementia to birds, trapped and caught to be kept in ornate birdcages, predominantly for the benefit of the bird catchers, but also under the auspices that this is good for the birds. The birdcages are the nursing and residential care homes and more recent developments such as ‘dementia villages’ that attempt to recreate the illusion of being the ‘free world’. The bird catchers meantime are health and social care professionals, equipped with certificates and educational credentials and whose job is to round up and care for the birds. So, the tone is set for the arguments made in the rest of the book about the human costs of medicalised discourses around dementia and how best to care for, and support, those living with a diagnosis. While the text may thus alienate as many readers as it endears, those who are persuaded by its propositions will no doubt find the critique as refreshing as it is forthright.
Across 289 pages presented in three chapters, the book outlines the outcomes (the term is used loosely) and experiences of a suite of activities, interventions and ideas implemented across Germany to promote dementia-friendly communities. Such communities are achieved not through adherence to sets of prescriptive goals and objectives, so much as by subscribing to an ethos or way of being in the world that enables, and perhaps even celebrates, the possibilities of life with dementia through an appeal to humanity, conviviality, sociability, interaction and a ‘normalisation’ of difference. This is a book about alternative ways of thinking about life with dementia, though we suspect that some readers will have been thinking along similar lines for some time. This is also a call for a life lived with dementia beyond constant recourse to biomedical and pharmaceutical intervention (which are arguably now well-rehearsed arguments), and, crucially, can be lived beyond a discourse that constructs people living with dementia as those needing to be ‘taken care of’. As the text at one point rather clunkily points out, what is needed are fewer pharmaceuticals and more ‘socioceuticals’ (p. 148) or, perhaps in the more linguistically tolerable terms of the book’s subtitle, a shift in emphasis from enabling people to ‘stay alive’ to ‘stay in life’.
The emphasis then, is very much on how to enhance the everyday, experiential realms for both those living with dementia and those without. The schemes described were organised through the German Aktion Demenz programme Menschen mit Demenz in der Kommune (trans. ‘People in the community living with dementia’) with funding provided by the Robert Bosch Foundation. The book pays homage to the accomplishments of the programme, though there is more than mere passing recognition of the challenges, stumbling blocks and at times immovable barriers, encountered along the way.
The opening chapter provides some background to Aktion Demenz’s programme and presents five themes that make up a call to action. Again, these may be familiar to readers, with recourse to ideas of citizenship, personhood and rights that have become part of the terminology of those on the psycho-social side of dementia debates. The central and arguably most useful chapter details almost 80 projects that make up the programme. These are varied in scale and scope, and range from art and leisure focused ‘interventions’ such as creative writing, poetry and theatre performances; the involvement of institutions including religious organisations, schools and colleges; the role of municipalities and local governance structures; sport and physical exercise such as bicycle groups and walking clubs; to attempts to enable mundane interactions such as those between neighbours, or store-workers and customers. All the schemes are united around two goals, one to raise awareness of dementia and second, to enable a ‘practical politics…in the community’ (p. 32). Although not referred to explicitly, there are identifiable parallels here with ideas associated with social-capital building, communitarianism, localisation and democratic devolution agendas, as well as a general drive for social inclusion and kinder communities. The final chapter, entitled ‘between reflection and concrete action’, sets the preceding observations in a broader framework, making connections with activities taking place beyond Aktion Demenz, and considers what the authors term a ‘sensitization’ towards dementia among civic society that can be achieved by raising awareness, encouraging everyday interactions and re-imagining what it means to care.
This is a book written with an almost palpable passion and enthusiasm to provide a better life for those affected by dementia. The commentary is underpinned by extracts and synopses from a nationwide evaluation of the various projects described. As such, this is a useful text that offers an English translation of findings that might otherwise fail to reach the audiences they deserve, and certainly enables their presentation in a considerably more accessible style than most evaluations afford. At times though, even supportive readers may quibble about the seeming absence of evidence to support perspectives, and while many will be supportive of the authors’ preference for stories about experiences, such persuasion while resonant at times would have benefited with more direct reference to evidence. The absence of discussion of structural inequalities, such as the links between poverty and loneliness, or the experiences of more diverse groups living with dementia, also leaves the book open to some criticism. Limited critical engagement with, for example, austerity politics or the rolling back of welfare regimes, perhaps leave communities with the responsibility to fill those spaces abandoned by the State.
A tighter editorial hand might have helped clarify some of the writing and reduce some of the repetition. In places, the German to English translation has left some rather lengthy sentences and, one suspects, some phraseology has not translated quite so neatly from the original prose. The rather lengthy central chapter, which at 196 pages accounts for almost 70% of the book and is presented without subheadings to provide respite, also leads to a somewhat unbalanced, and at times what feels like a rather long, text. But these are rather mean-spirited criticisms. Readers who persevere will find this a rewarding and engaging book. At a time when optimism seems in short supply, this is a text that allows for a brighter future not just for those living with dementia, but for any of us who retain hope in the human condition.