Abstract
Legal and human rights of people living with dementia are receiving increasing scholarly and public attention (Brown, 2019; Cahill, 2018; Devandas-Aguilar, 2019; Flamm, 2018; Green et al., 2021; Meenan et al., 2015; Mitchell et al., 2021; Steele et al., 2019), with dementia rights activists leading the movement for greater recognition of equality, liberty and inclusion of people living with dementia (Dementia Alliance International, 2016; Swaffer, 2018). Government and service provider responses to the COVID-19 pandemic have highlighted ongoing systemic issues of oppression and violation experienced by people living with dementia, including widespread detention and neglect of personal and medical care within care homes (Dehm et al., 2021; Peisah et al., 2020) prompting renewed calls for deinstitutionalisation of people living with dementia (Herron et al., 2021; Knapp et al., 2021; Quinn, 2021).
Healthcare and social care professionals are central to many of the legal and human rights violations experienced by people living with dementia including their confinement, segregation, physical and chemical restraint, neglect, and social isolation in care homes. At the same time, their integral role in the everyday lives and survival of people living with dementia means they also play a key part in realising legal and human rights of people living with dementia, in community and institutional settings (Steele et al., 2020). Recent research suggests there are a variety of entrenched economic, cultural and sociolegal barriers to recognition of human rights in the everyday lives of people living with dementia, and that central to these barriers are the views of healthcare and social care professionals about law, human rights and dementia (Steele et al., 2021).
Dementia, law and ethics: a practical guide for nurses and other healthcare professionals (Hughes et al., 2021) is an example of an accessible and practical text that provides the possibility for deepening healthcare and social care professionals’ understanding of legal and human rights, and engaging them in critical reflection on their role in the violation and realisation of these rights.
Dementia, law and ethics explores clinical decision-making and practice in the context of legal and ethical dynamics. The focus is on situations where clinical judgement is often in tension with what might be considered ethically appropriate and legal. The book is structured in 22 chapters. The first four chapters introduce dementia, law and ethics. The following 17 chapters each considers the clinical, legal and ethical dynamics of a series of ‘specific problems that arise in connection with dementia’ (ibid, 24). These ‘problems’ relate to community and institutional settings and cover a broad range of topics including diagnosis, driving, abuse, forced care, sexuality and relationships, food and nutrition, and death and dying. The authors explore each issue by reference to fictional vignettes based on real-life examples. Each of the 17 chapters is structured in a consistent manner that is directed towards practice and pedagogy: learning objectives, vignette, ethical commentary, legal commentary, and a concluding summary. The final chapter seeks to synthesise the exploration of the ‘specific problems’ through offering readers two organising concepts they can take with them into practice. One is ethics and law as providing a framework for clinical practice. The authors propose that a ‘framework provides a structure’ within which ‘there is often plenty of room to move and plenty of freedom, but specific moves may be restricted’, [w]e cannot go to certain places’, and ‘[w]e cannot simply leave the framework; or, if we did there would likely be consequences’ (ibid, 208). The second is ‘patterns of practice’ to understand how ‘we keep up standards without thinking about legal and ethical frameworks’ (ibid, 2010).
The key theme of Dementia, law and ethics is that ‘clinical decisions are at one and the same time ethical and legal’ (ibid, 207, emphasis in original). Thus, the book’s key message is that ‘acting well’ is necessarily clinical, ethical and legal, and that this is not a one-off event but a form of conduct that requires ongoing listening, self-reflection, and education (ibid, 213) in order to develop patterns of practice that are informed by law and ethics.
The intended readership of the book is healthcare professionals, particularly nurses. However, the book is also highly relevant to social care professionals and others working in dementia care in community and institutional settings. The book does not assume any previous knowledge of law and ethics, although it does assume readers will be familiar with healthcare settings. The book is focused specifically on law in England and Wales, although does draw on some jurisprudence of the European Court of Human Rights and offers brief discussion of international human rights law. As such, its legal content is most relevant to a UK readership, although it is useful at a general level to healthcare and social care professionals in jurisdictions with similar common law legal traditions, such as Canada, Australia and New Zealand. The book is also a useful resource to lawyers, activists and human rights, socio-legal and critical dementia scholars who are critically engaging with dementia care. This is because the book provides nuanced and detailed insights into the socio-political dynamics of the everyday lives of people living with dementia, and the ways in which professional authority and accountability is negotiated on the ground.
The book’s strength lies in its focus on opening discussion and reflection on legal and ethical dynamics that are often in tension with patterns of clinical practice. The book’s textbook-like format, use of vignettes, and conversational and accessible language provides a safe context in which professionals can engage with ethics and law, without becoming alienated or overwhelmed. Yet, this openness and its focus on the micro-level of individual practice might also be a limitation, insofar as the book is equivocal on structural dynamics that shape individual practice and the circumstances in which practice takes place. The book also does not acknowledge and venture into some of the more significant and radical aspects of legal and human rights that are increasingly discussed by dementia rights and human rights activists and in human rights, socio-legal and critical dementia scholarship, such as restraint as torture and violence (instead the book follows the curious trend in dementia and elder care contexts to use the less serious term ‘abuse’ rather than ‘violence’), confinement as a form of incarceration, and the prevalence of unlawful sexual and physical violence in care settings. Relatedly, the book is a missed opportunity to engage healthcare and social care professionals with their complicity in ableism and ageism, including as these manifest in the medical model of dementia, pathologized notions of BPSD and behaviours of concern, and the epistemic invalidation of people living with dementia, all of which are central to clinical practice and medical epistemology (Kontos et al., 2021; Robertson & Travaglia, 2020; Swaffer, 2019; Steele et al., 2020).
Overall, Dementia, law and ethics is a useful resource for engaging healthcare and social care professionals in legal and human rights. As such, the book provides an opportunity to contribute to a more socially just future for people living with dementia. Let us hope that opportunity is seized.