People with dementia around the world still have to endure discrimination, social exclusion and, sometimes, degrading and harmful treatment. This happens at the hands of society at large but also through people who are supposed to care for them. Families of people with dementia will know of the difficulties in supporting their relative's agency, autonomy and personhood in the face of cognitive decline and current policy and legal frameworks. Suzanne Cahill's book Dementia and Human Rights provides a thought-provoking call for action for people with dementia, their families, carers, politicians, policy makers and everyone else to think about the reality of living with dementia in terms of human rights and social justice. In her book, Cahill challenges prevailing models of dementia to recast the conditions as a disability under the United Nations Convention on the Rights of People with Disabilities (UNCRPD). This provides a tool to empower people with dementia to act as self-advocates for their own rights. It also gives an alternative lens to analyse policy, legal and practice frameworks in terms of equality, non-discrimination and dignity. The human rights approach to dementia forwarded by Cahill is not a totally new idea per se. But, the book offers a much-needed introduction and in-depth discussion of the relationship between dementia, disability and human rights in order to take it forward in theory and practice. As such, the book is commendable to policy makers, academic professionals, students particularly of human rights, disability studies, social gerontology, health-care studies, and anyone who is interested and involved in dementia and the quality of life of people living with the condition.
Human rights, disability studies and dementia are all broad and sometimes complex topics with their own histories of theoretical thinking. Cahill did well in structuring the book in two parts for ease of understanding, even for those who have no prior knowledge about any of these broad topics. In Part One (Chapters 1–3), Cahill provides a theoretical introduction to the relationship between human rights, dementia and the UNCRPD. Part Two (Chapters 4–7) is about the meaning of a human rights lens for policy and practice with a contribution by Dr Eilionor Flynn exploring the meaning of a human rights approach for the legal capacity of people with dementia.
In Chapter 1, Cahill sets the scene by defining ‘human rights’ and explaining how the book approaches dementia from a social constructionist perspective. Chapter 2 usefully outlines the main lines of thinking of various models of disability and dementia, and explains how the disability rights movement paved the way for the UNCRPD. This chapter importantly highlights how people with dementia have not originally been part of the disability rights movement and the unique challenges this is causing for aligning the dementia movement with disability rights. Chapter 3 introduces the UNCRPD and highlights its relevance for people living with dementia. This chapter also outlines how an international rights-based movement in dementia policy and practice is currently emerging and gives specific examples for this. Chapter 4 discusses the practical meaning of a human rights lens to people living with dementia in the community. In order to do so, Cahill picks a number of rights from the UNCRPD, such as the right to an early diagnosis and its disclosure (Article 25, UNCRPD) and explores them in the light of practical barriers for people with dementia. Chapter 5 considers the right to a good quality of life in care or nursing homes, this time drawing on human rights issues facing people with dementia in residential care. Chapter 6 offers an in-depth exploration on the practical implications of a human rights approach to policy and practice, including a discussion on the relationship between person-centred care and human rights. In Chapter 7, Dr Eilionor Flynn frames the legal capacity of people with dementia as a critical human rights issue. In this chapter, Flynn argues that from such a rights perspective, people with dementia must have their continuing legal capacity recognised and deserve support in exercising their will and preference. Chapter 8 concludes the book with a summary of its aim, the main themes forwarded throughout other chapters and an outlook into the future. With the number of people with dementia around the world rising rapidly, Cahill is calling for positive collective action to ensure a good quality of life for anyone in society, irrespective of any disability including dementia. This collective action should be based on human rights and the idea of equality and social justice.
