Conclusions: grounds for hope

This chapter will be used to highlight the key contribution this book makes to the field of dementia care policy and practice, as well as identifying some of its limitations. Returning to the core themes consolidated in the UN Convention and introduced in chapter three namely equality autonomy participation and solidarity and based on the topics reviewed in earlier chapters, the chapter points to the gaps that exist between the rhetoric of policy initiatives and the reality of peoples’ everyday lives and the further gap that can exist between policy objectives and research evidence. The chapter argues for a need for much more budgetary and political attention to be focused on dementia and for future iterations of dementia strategies to take cognizance of human rights issues. Human rights legislation rather than being seen as punitive and burdensome should be viewed as a critical framework for guiding all levels of action with people with dementia and their family members.

An introduction to human rights and dementia

This chapter provides an introduction to the topic of human rights and dementia. It briefly traces the history of the human rights movement and discusses the significance of the UN Declaration on Human Rights (1948) and how the latter has helped shape other human rights treaties including the UN Convention on the rights of people with disabilities. The latter is a tool which will be used as a compass for analysis throughout the book. The chapter differentiates between human rights and human needs. It critically reviews negative and positive rights in the context of people living with dementia and describes the three generation of rights all people possess by virtue of being human. It argues for the application of a rights based framework to be used by practitioners in dementia care and points to the usefulness of using a social justice /rights based lens to interrogate dementia, extend the contemporary debate and ultimately attempt to improve quality of life and quality of care for all those living with dementia. The main aim of the book, the critical perspectives informing it and some of its distinctive features are highlighted.

Legal capacity for people with dementia: a human rights approach

This chapter explores the right to legal capacity for people with dementia. The analysis focuses on General Comment 1 of the UN Committee on the rights of persons with disabilities. The chapter also provides some examples of law reform around the world on the issue of legal capacity and considers how these reforms may impact on people with dementia. Finally the chapter considers how the right to legal capacity may be framed in any new UN Convention on the rights of older persons. The chapter argues that legal capacity is a critical human rights issue in the context of dementia and that Article 12 (CRPD) and the general comment 1 provide a strong base for respecting the autonomy and self determination of people with dementia

Emerging public policy on dementia: the implications of a human rights-based approach for policy and practice

The purpose of this chapter is twofold. First it aims to explore the implications of a rights based approach for dementia policy development. Here it will be claimed that public policy on dementia is new and whilst in the past it lacked political and clinical ownership nowadays in many developed countries, dementia has been demarcated as a policy area in its own right. Those global and European forces, which have helped influence policy development in dementia will be outlined in the chapter. Picking up on the issues discussed in the two preceding chapters and with reference to countries’ evolving national dementia plans, it will be shown how with the exception of some few countries, a rights based discourse has to date failed to penetrate most iterations of national dementia policy plans across the Western world. Part two of the chapter will advance to addressing the implications of rights based approach in dementia care practice. In this section the need for dementia specific training which incorporates human rights principles will be reviewed and the synergies between elements of person-centred care and human rights principles will be drawn out.

Setting the context: The UN Convention on the Rights of Persons with Disabilities

Since the UN Convention is being used as a compass for analysis and is the common thread linking all chapters in this book, the purpose of this chapter is to provide a broad overview of the objectives, principles and obligations contained in the Convention directly relevant to the lives of people living with dementia and their family members and to explain how the Convention works. The chapter also draws on Flynn’s typology for classifying the core themes contained in the UN Convention namely equality, participation, autonomy and solidarity, a typology which will be returned to in chapter eight. It identifies those Articles (a total of 12) which will be critically reviewed in later chapters, it explains the PANEL principles and shows that as a human rights instrument underpinned by the social model of disability, the UN Convention provides a solid basis for the reframing of dementia as a disability. The chapter concludes by discussing a number of recent events which have taken place across the world which reflect a slowly evolving rights based movement in dementia policy and practice.

The right to a good quality of life in care homes or in nursing homes

Based on the UN Convention, (CRPD, 2006), the purpose of this chapter is to review some fundamental rights we all enjoy, yet for a variety of reasons may be threatened or violated in people living with dementia in long term residential care. Drawing on the relevant literature, the chapter will also tease out some of the discrepancies between human rights standards as articulated in the UN Convention (CRPD, 2006) and the reality of everyday life experienced by people with dementia living in long term care. A third aim of the chapter is to analyze the extent to which access to these rights are embedded and articulated in policy documents including national dementia strategies. The core human rights topics which will be discussed include Article 15 (the right to freedom from torture or cruel inhuman or degrading treatment or punishment), Article 22 (the right to respect for privacy), Article 9 (the right to access especially to the physical environment) and Article 30 (the right to participate in cultural life, recreation and leisure).

The right to a good quality of life at home and in the community

This chapter addresses the topic of the everyday human rights and fundamental freedoms many of us take for granted but are often denied when a person develops dementia. These include the right to, when worried about our health obtain a medical diagnosis and be advised about this by a qualified primary care physician; the right to post diagnostic services including rehabilitation based on a multi-disciplinary assessment and the right to live in the community including a dementia friendly community and participate fully in all aspects of its civil social, economic and political life. The human rights issues directly relevant to the topics discussed in this chapter include Article 12 (equal recognition before the law), Article 25 (health services and early diagnosis), Article 26 (early rehabilitation based on a multi-disciplinary assessment and Article 19 (independent living and social inclusion).

Dementia as a disability

Chapter two draws on the extant literature, to deconstruct dementia and to show whilst it has been conventionally described as a biomedical cognitive disorder, dementia can also be contextualised as a disability. It provides an in-depth discussion of the biopsychosocial and social model for deconstructing dementia and the accompanying tools associated with both models that is the ICF (WHO, 2001) and the UN Convention (CRPD, 2006). In this chapter it will be shown how the biopsychosocial model has significantly shaped how disability is described and understood in the UN Convention (CRPD, 2006), the prism through which dementia will be critically reviewed in this volume. Demonstrating why dementia qualifies as a disability in accordance with the UN Convention’s (CRPD, 2006) description of disability is most important, given this book explores the rights of people living with dementia to claim entitlements enshrined in the CRPD.