Abstract
During the early 21st century, human rights have become increasingly pertinent to dementia studies, simultaneously promoted through advocacy movements and the critical tradition. It is in this context that Dementia and Human Rights is best understood, as an attempt to establish some conceptual solidity within a relatively embryonic area of dementia scholarship. Cahill identifies a broad readership – policy-makers, health and social care professionals, students of many related disciplines and people affected by dementia – but the dementia studies and advocacy communities probably have the most to gain from this text and will undoubtedly find the contents deeply stimulating.
The book has two parts. Part one outlines a “conceptual framework,” while part two applies the resulting “human rights lens” to policy and practice. Opening chapter one, Cahill champions the potential for a rights-based approach to improve understandings of dementia and identifies the book’s major intellectual influences: disability studies, social constructionism, critical social gerontology and human rights. Chapter two reviews the biomedical, social and biopsychosocial models of both disability and dementia to argue that dementia is a disability. The chapter concludes with some consideration of the UN Convention on the Rights of Persons with Disabilities (CRPD). Cahill argues that, despite the CRPD omitting “cognitive impairment,” dementia falls under the convention by virtue of its characteristic impairments. Chapter three progresses to outline the CRPD’s development, influences, aims and articles, before highlighting several recent political initiatives toward a disability rights approach to dementia.
Part two begins with chapter four, centring on non-institutional care by focusing on the rights to equal legal recognition, early diagnosis, rehabilitation and independent living in the community. Chapter five turns to institutional care by considering the rights to freedom from mistreatment, privacy, environmental accessibility and meaningful participation. Both chapters outline examples of progress in realising those rights, alongside the many ways in which they are contravened. Chapter six considers the emerging impact of human rights in dementia-specific policy and practice, advocating a strengthening of this influence. Chapter seven, written by Eilionóir Flynn, returns in greater depth to the issue of legal recognition. The portrayal of the topic is outstanding, a must-read for anybody interested in capacity. Chapter eight concludes the book on a positive note, suggesting several ways in which dementia rights are likely to be strengthened over coming years.
As with all ambitious works, several critiques can be extended. For instance, the nature of cognitive impairment is never specified. There are brief mentions of the mind–body problem in disability studies, but this is not addressed substantively and uncertainties regarding the status of cognitive disability remain throughout. One consequent problem is that the application of the CRPD to dementia rests on a loose definition of impairment and the acceptance of a staunchly neurophysiological notion of dementia. Arguments that dementia does and should fall under the CRPD are conflated, and are perhaps too brief and pontifical. The conceptual ambiguity surrounding cognition is also important because casting dementia as a disability under the CRPD implies that cognition does not qualify rights, a notably hard-line position. The issue comes to the fore in chapter seven, which tackles tensions between rights-based and capacity-based legislation. Flynn’s route through these tensions (much more rights-based practice with capacity-based caveats in extreme cases) does not satisfy the claim that an impairment cannot impede a right. However, her proposition is so nuanced and deftly pragmatic that one wonders whether the remaining conceptual inconsistency is really that important.
More broadly, there is little critical engagement with dementia studies. Although seeking to demarcate an innovative trajectory, some of the discipline’s longstanding problems are perpetuated. There is no reflection on the book’s familiar humanist stance, and the exceptionality of the person is asserted without any attempt at justification. This is especially problematic when Kitwood’s contingent concept of “personhood” is conflated with the inalienable “humanity” of human rights. Similarly, the status of cognitive impairment as a natural kind is accepted wholesale. Despite the book’s self-identified critical and constructionist sensibilities, it explicitly supports a neuropsychiatric imagining of dementia in terms of discrete neuropathologies. These are key debates that a discussion of disability rights could invigorate, and must at least recognise, yet they are absent here. Consequently, an imbalance emerges between the critical tradition’s two key commitments of political transformation and value deconstruction. The former is elevated at the expense of the latter.
Finally, the book’s leading claim is suspect. It is argued that human rights offer a new lens through which we can better understand dementia. In practice, the approach is far more prescriptive than analytic, being primarily concerned with what should be rather than why things are. Human rights are a significant political tool that will likely transform dementia over coming years, but there are stubborn uncertainties regarding their empirical use and they are not addressed here. Those uncertainties are rendered more conspicuous by their absence following the initial suggestion that an innovative theoretical approach is at stake. What explanatory power there is comes from traditional psychosocial and critical scholarship, and it is therefore unclear what unique analytic work a human rights lens is contributing.
While overlooking core inconsistencies, Cahill excels in clearly stating the key premises and implications of one of the most important contemporary topics within dementia studies. The book succinctly outlines a range of pertinent issues, especially when discussing policy. The accessible way in which the CRPD is explained is a laudable addition to the dementia canon, presenting academics and activists with an invaluable resource. Looking forward, the book will therefore likely provide the foundation for important political and research developments. Indeed, it captures a thought-provoking juncture in the development of dementia scholarship. However, the book is perhaps best read as a call to action. It details multiple ongoing abuses faced by people with dementia because of their conditions and directs our attention toward transforming the socio-political production of those abuses.
