Dementia and Human Rights

Cahill, Suzanne, Suzanne Cahill

• Publisher: Policy Press
• Year: 2018
• Print ISBN: 9781447331377
• eBook ISBN: 9781447331414
• Edition: 1
• Topic: Social Sciences
• Subtopic: Diseases & Allergies
• Index: Social Sciences

The time has come to further challenge biomedical and clinical thinking about dementia, which has for so long underpinned policy and practice. Framing dementia as a disability, this book takes a rights-based approach to expand the debate.

Applying a social constructionist lens, it builds on earlier critical perspectives by bringing together concepts including disability, social inclusion, personhood, equality, participation, dignity, empowerment, autonomy and solidarity. Launching the debate into new and exciting territory, the book argues that people living with dementia come within the UN Convention on the Rights of Persons with Disabilities and therefore have full entitlement to all the rights the Convention enshrines.

A human rights-based approach has not to date been fully applied to interrogate the lived experience and policy response to dementia. With the fresh analytical tools provided in this book, policy makers and practitioners will will gain new insights into how this broader perspective can be used to further promote the quality of life and quality of care for all those affected by dementia.

PART ONE

A conceptual framework

ONE

An introduction to human rights and dementia

Introduction

"The rights and needs of persons with dementia have been given low priority in the national and global agenda. In particular, with the progression of the disease, as their autonomy decreases, persons with dementia tend to be isolated, excluded and subject to abuse and violence", so said Ms Rosa Kornfeld-Matte, UN Independent Expert on the Enjoyment of All Human Rights by Older People, on the opening day of the first Ministerial Conference on Global Action against Dementia held in Geneva in March 2015.

Ms Kornfeld-Matte went on to say how it was critical to tackle dementia through a human rights-based perspective because people with dementia are 'rights holders', and because states and other stakeholders are 'duty bearers'. According to her, policies, legislation, regulations, institutions and budgets relating to dementia should all be embedded in a system of rights and obligations. She concluded this powerful statement with the following provocative appeal:

I call on all States and other stakeholders to adopt a human rights-based approach when addressing dementia. Dementia is a public health issue, but also a human rights concern. Persons with dementia should be able to enjoy their rights and fundamental freedoms in any circumstances. Their dignity, beliefs, needs and privacy must be respected at all stages of the disease. (Rosa Kornfeld-Matte, 2015)

Later during the same conference, two personal appeals to have their human rights respected were made by young people: Kate Swaffer, an Australian nurse, author, co-founder, Chair and CEO of Dementia Alliance International (DAI), and Chair of Alzheimer's Australia Dementia Advisory Group, who was first diagnosed with dementia at the age of 49, and Mike Ellenbogen, an American IT executive, who first presented with symptoms of dementia at the age of 39, and a decade later was finally diagnosed.

In an audience of some 450 people representing 89 countries around the world, both Kate and Mike discussed the many challenges including discriminatory practices they have encountered as a direct result of having dementia. These include: their efforts to obtain a diagnosis, to live a life like others and 'not be shut away', to continue to drive, work, manage their finances, access services and be treated with dignity and respect. They appealed for the human rights of people living with dementia to be protected, for a more balanced research agenda to be developed with an equal focus on care and cure, and for more ethical integrated care pathways, including, in Kate's case, rehabilitation services to be made available. Through their thought-provoking contributions including lived experiences, they reminded this large international audience of the marginalization, social exclusion, indignities and injustices people with dementia often experience.

The conference was unique since it was the first of its kind where the World Health Organization (WHO) brought together individuals living with dementia, their family members, government ministers, clinicians, researchers, service planners, service providers and dementia advocacy groups, including Alzheimer Europe and other national Alzheimer societies and associations, to collectively adopt a human rights-based approach to dementia, a perspective later incorporated by Dr Margaret Chan, WHO's CEO, when, in her concluding remarks and final call for action, she proclaimed:

We [the participants] call for actions … raising the priority accorded to global efforts to tackle dementia … strengthening capacity, leadership, governance, multisectoral action and partnerships to accelerate responses to address dementia; promoting a better understanding of dementia, raising public awareness and engagement, including respect for the human rights of people living with dementia, reducing stigma and discrimination, and fostering greater participation, social inclusion and integration… (Dr Margaret Chan, quoted in WHO, 2015b, p 43; emphasis added)

That was March 2015, and since then, a slowly evolving rights-based dementia movement has begun to gain traction across the world through the work of the WHO, Alzheimer's Disease International (ADI), Alzheimer Europe, DAI, the Dementia Engagement & Empowerment Project (DEEP), the Scottish Dementia Working Group (SDWG), the Irish Dementia Working Group (IDWG), and several other regional and national dementia working and advisory groups. Although calls for the expansion of this rights-based dementia movement have recently been made (Mental Health Foundation, 2015; Rees, 2015; WHO, 2015a; Williamson, 2015; DAI, 2016; Hare, 2016; Swaffer, 2016, Shakespeare et al, 2017), curiously, a rights-based approach, reflecting a broader emphasis on autonomy, empowerment, dignity, social inclusion, participation and non-discrimination, with some few exceptions, has not as yet been explicitly applied to most countries' policy responses and dementia service developments.

It is timely therefore to move the policy debate forward, given the fact that dementia can significantly compromise an individual's ability to protect their own human rights (Kelly and Innes, 2012; Hare, 2016), those living with the condition are often marginalized and stigmatized (Innes et al, 2004; Bartlett and O'Connor, 2007; ADI, 2012), and virtually every aspect of dementia practice, policy and research (WHO, 2015a), from diagnosis to death, lends itself well to a critical analysis from a human rights-based perspective.

Rationale for writing this book

That first ministerial global conference in 2015, which I was fortunate to attend, along with the inspirational paper on human rights and dementia delivered by my Irish colleague, Gráinne McGettrick, at the Alzheimer Europe conference in Glasgow in 2014, combined with my own professional experience working in the field, a career straddling two continents and three decades, has more recently set me thinking critically about dementia as a human rights issue, and has planted the seeds for writing this book. And certainly the dementia landscape and the theoretical frameworks used by me now to understand, research and teach dementia courses have changed significantly since the late 1980s, when I first became employed in the field in Australia.

Indeed, my first real exposure to what was to become a lifetime career working in the area of dementia was 30 years ago (1988), when employed at the University of Queensland, I had responsibility for coordinating a longitudinal study of 'family caregivers'. That study investigated the economic, emotional and social costs of Alzheimer's disease (Rosenman and Cahill, 1989; Cahill and Rosenman, 1991). This was the era when Alzheimer's disease, called at the time 'Senile Dementia of the Alzheimer Type' (SDAT), was viewed almost exclusively through a biomedical lens – framed as a cognitive brain disorder – and when the disease model remained largely unchallenged. It was an era when concepts such as personhood, selfhood, social citizenship, autonomy, self-determination and human rights had not as yet come to the fore: in short, it was an era of therapeutic nihilism, 'When [once] psychiatry had made a probable diagnosis … its task was virtually complete…' (Kitwood, 1993a, p 541), and when caregivers were seen as the hidden victims (Holicky, 1996) of an illness that robbed individuals' of their minds and resulted in never-ending funerals (van Gorp and Vercruysse, 2012).

In keeping with the scope of much social science research on dementia at the time, that study was largely quantitative: its primary focus was on caregiver burden, dementia severity, the cost of care, time from diagnosis to nursing home placement and so on. 'Family caregivers' were the unit of analysis, and from a research perspective, it would have been unheard of then to interview the individual or attempt to investigate the subjective experience of a person living with dementia.

Several years later, whilst doing the fieldwork for my PhD (Cahill, 1997), another longitudinal study that explored the gendered politics of caregiving and particularly factors associated with starting and stopping the 'caring role', I had the privilege of spending much time again in the homes of people diagnosed with dementia, conducting in-depth interviews with 'family caregivers' about service needs and service use. The interview data collected was often raw and challenging, and I remember at times being struck by its rich content: the strong gendered kinship obligations to sustain caring roles, despite a loved one's extraordinarily high dependency needs, the ploys used by some people, generally women, to reduce the distressing effects of the 'behavioural and psychological symptoms of dementia' including aggression, paranoia, repetitive questioning, sleep disturbance and delusions, and, at the heart of it, the love, humanity and compassion many family members expressed for their relatives.

But other chilling memories from the fieldwork for that study remain etched in my memory. These include detailed narratives told to me by family members, often in the presence of a loved one, which sadly honed in on their at times irresponsible and embarrassing behaviour, often with a distinct lack of regard for the impact their storytelling had on their relative sitting next to them. It was as if they assumed that the person was sub-human, no longer existed, and because of the dementia could no longer experience humiliation. On a few occasions I remember trying to quickly change the subject, that we move to another room, or that we talk about these issues later, but to no avail. A common response was, "Oh don't worry, she doesn't understand anything now anyway." And not surprisingly, there were times when I left these interviews, feeling I had behaved unethically and concerned about the impact these narratives had on the individual experiencing the symptoms. We can never assume that a person diagnosed with dementia lacks insight or is unaware (Howorth and Saper, 2003).

Later, as Director of the Dementia Services Information and Development Centre (DSIDC) in Ireland, I had exposure to accounts of indignities and the neglect of the individuals' human rights, through some of the narratives told to me during training days, and through my own personal observations at the nursing homes where these workshops took place. Examples include nursing home residents with no next of kin at times dressed in communal gowns; individuals with severe dementia essentially warehoused, sitting motionless in Buxton chairs and locked away in large Nightingale wards (with no subdivisions) and with no evidence of any psychosocial stimulation. Other examples include the lack of respect for residents' privacy rights and their occasionally being referred to by busy inexperienced staff as "another Alzheimer's".

Likewise as a Lecturer in Trinity College Dublin and through students' Master's and PhD dissertations, more subtle examples of human rights breaches were brought to my attention. These include the massive imbalance of power relations in hospitals, where at care planning meetings, supposedly organized to empower the 'patient' and family members, the professional voice often dominated, and where 'patients' with a cognitive impairment were at risk of being talked over by health service professionals who sometimes referred to them in the third person (Donnelly, 2012). Other examples include reminiscence work being conducted in noisy sub-optimal physical environments, facilitated by staff, inexperienced and untrained in reminiscence (Parsons, 2015), and the lack of choice in long-term care facilities available to people living with dementia, especially the absence of 'housing with care' models (Convery, 2014).

It is important to create a balanced picture, and whilst this book is concerned with the neglect and at the extreme violation of human rights of the individual living with dementia, it needs to be highlighted that over the years I have worked in Australia and in Ireland with many exceptionally dedicated practitioners whose commitment to the individual diagnosed with dementia has been beyond the call of duty. I have also had the opportunity to visit many day care centres, nursing homes and community hospitals, where staffs' understanding of personhood, social citizenship and person-centred care practices has been second to none. Being Irish, several of the examples drawn on in the book come from Ireland, but this is not to suggest that the quality of dementia services in Ireland is in any way inferior to services delivered in other European countries and elsewhere.

In fact, I hold a vivid recollection of many years ago, visiting a care home in a Nordic country, which will remain nameless. During the visit with colleagues VT and JC from Trinity College Dublin, as we were about to leave a state-of-the-art dementia unit, where on entry we had been welcomed with the delightful sights of residents and staff dancing to music, I heard some scratching on a door. Curious, I asked the Director of Nursing to investigate what was going on. She then produced keys and in front of all three of us, she opened the door and released four residents, each of whom had been deliberately locked away during our visit. One of these ladies had soiled herself whilst locked inside the same room, or who knows, perhaps this was the reason she had been locked in during our visit. However, what I do recall is the undignified and insensitive manner in which the incident was managed, as in front of all three of us, strangers in her home, the Director lifted the lady's skirt and commented disapprovingly on the incident.

These, along with other similar incidents, have convinced me that the individual living with dementia is exceptionally vulnerable and is at a heightened risk of having their human rights violated (WHO, 2015a; Hare, 2016). A human rights lens provides a very useful tool to rethink and realign dementia policy and practice (Mental Health Foundation, 2015), yet often practitioners and policy-makers are not thinking about human rights issues when supporting a person with dementia (Forbat, 2006; Kelly and Innes, 2012). There is a gap in our understanding of dementia from a social justice perspective, and an urgent need to interrogate dementia using a human rights lens.

Aims and objectives

This book therefore attempts to address this gap in understanding. Throughout the chapters I argue that dementia is a disability, and that because of this, the individual just like any person with a disability is entitled to each of the rights set out in the UN's Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006) (hereafter referred to only as CRPD). By operationalizing a selection of these rights, the book provides a fresh conceptual lens to interrogate dementia policy and practice. Throughout the chapters and wherever possible, the reader will gain new insights into the way a cognitively impaired person constructs their own reality, how that person makes sense of their world, and how the individual is responded to through current health and social care policies.

The main aim of the book is to challenge thinking, provoke debate and demonstrate how a human rights-based approach, underpinned by the social model of disability, transports dementia into a new and exciting arena (McGettrick, 2014; Mental Health Foundation, 2015). This book brings to the fore critical issues relating to disability, human rights, social justice, discrimination, oppression, equality and participation. Within the chapters, new analytical tools are introduced that can be used to interrogate and deconstruct dementia, thereby further expanding the dementia policy and practice debate.

A central and unifying theme underpinning each chapter is recognition of the civil, political, social, economic and cultural rights the individual living with dementia possesses, to live well, free from stigma and discrimination, to engage in decision-making on matters directly relevant to their lives, to have choice, exercise autonomy and where necessary, to receive support to do so, and to be valued and treated with dignity and respect. It is argued that to achieve this, the voice of the person with dementia must be heard, service providers must be upskilled, public policy must be reframed and an intersectoral approach needs to be adopted whereby change at an international level is driven by strong political leadership. In this way, the book provides a timely framework in which to expand knowledge and understanding of dementia, incorporating into analysis key concepts including personhood, autonomy, participation, equality, solidarity and human rights.

Policy-makers, researchers, health service professionals and care staff, along with students in medicine, nursing, occupational therapy, physiotherapy, psychiatry, psychology, social work, gerontology and disability studies, will gain new insights from this book that builds on earlier critical perspectives (see Kitwood, 1990, 1993a, b, 1995, 1997a, b; Sabat, 1994, 2001, 2005, 2011; Marshall, 1998, 1999, 2001, 2003, 2005; Innes et al, 2004; Bartlett and O'Connor, 2007, 2010; Hughes, 2011, 2014). The book will also be of interest to people living with dementia, their family members and their advocates. It seeks to improve policy and practice responses by arguing that the individual living with dementia has a disability in keeping with the CRPD's description of disability (Mittler, 2015), and therefore that person has full entitlement to all the rights set out in the CRPD. Original insights are proposed as to how a rights-based approach to dementia can be applied in practice and incorporated into policy development.

Throughout the chapters it will be contended that rights-based initiatives, embodying human rights principles and standards, can ignite change in dementia policy and practice (McGettrick, 2014), and can improve quality of life and quality of care for all those affected by this condition. A rights-based approach has the potential to bring about a seismic shift in thinking (Quinn, 2010) as it demands accountability...

Table of contents

• Cover
• Title page
• Copyright
• Dedication
• Contents
• List of tables and figures
• Acknowledgements
• Foreward
• Part One: A conceptual framework
• one: An introduction to human rights and dementia
• two: Dementia as a disability
• three: Setting the context: The UN Convention on the Rights of Persons with Disabilities
• Part Two: Using a human rights lens to interrogate policy and practice
• four: The right to a good quality of life at home and in the community
• five: The right to a good quality of life in care homes or in nursing homes
• six: Emerging public policy on dementia: the implications of a human rights-based approach for policy and practice
• seven: Legal capacity for people with dementia: a human rights approach by Eilionóir Flynn
• eight: Conclusions: grounds for hope
• References