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Introduction

2017: Dementia as a disability? Implications for ethics, policy and practice

Why did we write this paper?

People experience dementia in different ways, not just in terms of the type and severity of symptoms, but also in terms of how they react to and manage living with dementia. Increasingly, people with dementia are expressing a desire to get on with their everyday lives. They want to avoid being defined solely in relation to dementia and to continue to be considered as valued members of society. This is particularly important as the term dementia often has negative connotations. It is widely considered as a stigma. Neurological impairment may interfere with people’s ability to get on with their lives, as may differences in coping skills, financial resources, the emotional and psychological impact of dementia, and access to timely and good quality support. Reactions of relatives, friends and fellow citizens are also important, as well as society’s response to dementia. This was highlighted by Kitwood in the 1990s when he outlined what came to be known as the biopsychosocial model of dementia1. There are also differences at the level of society, reflected in practices, attitudes and structures. These may, on the surface, seem fair or neutral (i.e. “that’s just the way it is”). In many cases, however, they reflect a lack of consideration and failure to act in a responsible, ethical and even legal way towards people with dementia.

Alzheimer Europe has long advocated in favour of recognising dementia as a potential disability. In its Strategic Plan (2016–2020) ‘Changing perceptions, practice and policy’, it stated, “Alzheimer Europe and its members fully commit to promoting the rights, dignity and autonomy of people living with dementia. These rights are universal, and guaranteed in the European Convention of Human Rights, the Universal Declaration of Human Rights, the International Covenants on Economic, Social and Cultural Rights and Civil and Political Rights, and the Convention on the Rights of Persons with Disabilities”.

Alzheimer Europe believes that policies and research for people with dementia should be based on ethical principles. This is also in keeping with the emerging discourse and focus on dementia as a disability at national, European and international levels, combined with the promotion of human rights, citizenship and social inclusion. When developing the 2017 workplan, Alzheimer Europe therefore decided to:

  • campaign for the recognition of dementia as a disability;
  • collaborate with Alzheimer’s Disease International on an analysis of how the principles enshrined in the UN Convention on the Rights of Persons with Disabilities can be applied to people with dementia;
  • join the European Disability Forum to collaborate with other European organisations on the development of a European disability strategy and the implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD);
  • focus on the ethical implications linked to the recognition of dementia as a disability.

Alzheimer Europe’s interest in disability and dementia is also linked to the desire to promote the human rights of people with dementia. In the World Health Organisation (WHO) 2011 Report on Disability, disability is described as a human rights issue because:

“People with disabilities experience inequalities – for example, when they are denied equal access to health care, employment, education, or political participation because of their disability.

People with disabilities are subject to violations of dignity – for example, when they are subjected to violence, abuse, prejudice, or disrespect because of their disability.

Some people with disability are denied autonomy

– for example, when they are (…..) confined in institutions against their will, or when they are regarded as legally incompetent because of their disability” (Quinn and Degener 2002, cited in WHO 2011, p.9).

People with dementia may experience disability. If so, they should be covered by provisions laid down in various national, European and international policies, laws and conventions. It is important that everyone, with and without dementia, realises this. This will enable people with dementia, if and when needed, to benefit from the same kind of protection and rights afforded to other people with disabilities. This should not be taken to imply that dementia per se is a disability. Rather, we are suggesting that the impairments experienced by people with dementia may in some situations be disabling and that people with disabilities have certain rights. This is explained in more detail in section 6.1.

1 See Sections 7 and 8 for more about Kitwood’s work.

Clearly, ethical issues and human rights are closely related and intertwined, with one or the other of these two important societal ideals being at the forefront of discussions.

In this report, we focus on the possible implications for ethics, policy and practice of raising awareness about the potential of framing dementia as a potential disability.

What do we mean by ‘implications for ethics, policy and practice’?

In exploring the ethical implications of viewing dementia as a potential disability, we also reflect on what the impact might be in terms of how society is or should be organised and what this means for people’s everyday lives. Ethics is not just about big societal issues, which are discussed in the media, such as immigration, war, abortion or euthanasia. Often, everyday matters have an ethical dimension. The term ‘ethics’ refers to standards which tell us how people ought to behave in various situations and how they should live with one another. This is often framed in terms of rights, obligations, duties, benefits to society, fairness or specific virtues (Velasquez et al, 2010). These standards of behaviour are based on perceptions of right and wrong or good and bad. A few decades ago, Beauchamp and Childress (2001) developed a set of four biomedical ethical principles. These were:

  1. respect for autonomy (respecting a person’s independence and ability to decide what should happen or be done to him/her),
  2. beneficence (i.e. doing good, whilst trying to balance possible benefits against risk and costs),
  3. non-maleficence (i.e. avoiding doing harm) and
  4. justice/equity (treating people equally and fairly through a fair distribution of benefits, risk and costs).

We are going to use these principles in this report as a very broad ethical framework within which to reflect on dementia as a disability.

These principles were originally intended to serve as a framework to guide professional medical ethics. They have since been applied in a wide range of contexts. There are also other principles and values which are perhaps equally important such as:

  • trustworthiness,
  • honesty,
  • integrity,
  • compassion,
  • ensuring well-being,
  • confidentiality,
  • respect for privacy, personhood and dignity.

In addition, it is important to consider the lived experiences of people with dementia and the complexity of human relationships, and not to rely solely on abstract principles and values. So our use of these principles as a guiding ethical framework should be understood quite broadly. It encompasses a wider range of principles and values and takes into account people’s lived experience and relation- ships with other members of society.

The overriding question behind each section in this report is: what are the implications for ethics (in terms of respect for autonomy, beneficence, non-maleficence and justice/ equity), policy and/or practice of this particular topic?

Who wrote this paper?

In 2017, two working groups drafted, debated and agreed on a final version of this paper over a period of roughly 8 months. They had a total of four face-to-face meetings and numerous exchanges of drafts and comments between those meetings. The two groups had expertise in relevant areas such as:

  • dementia (knowledge about dementia as well as the experience of having dementia),
  • philosophy,
  • disability,
  • psychology and psychotherapy,
  • law,
  • anthropology and
  • policy making.

Alzheimer Europe is immensely grateful to the members of these two groups without whom we would not have been able to produce this document. Please have a look at the acknowledgements section where we have included details about the background of each expert.

What’s in this paper?

In this paper, we have tried to highlight issues which we feel require attention and may need further debate, discussion and reflection. After this introduction, we look, in Section 3, at disability-related terms and definitions. We then set the scene in Section 4 by discussing how the disability movement evolved and the development of different models (or ways of making sense) of disability.

In Section 5, we consider the relationship between disability and our understanding of personhood and dementia. We then consider how accepting that dementia can be a disability might impact on the lives of people with dementia (i.e. how they feel about themselves, how they relate to others and how they are treated by other people).

Section 6 on ‘human rights and opportunities’ discusses how recognising that dementia can be a disability may be beneficial to people with dementia. It focuses on the United Nations Convention on the Rights of Persons with Disabilities. This section also looks at the relationship between policy and practice, and considers more abstract rights. These are sometimes called capabilities by philosophers. They reflect basic minimum requirements for leading “a good life” that every human being should be entitled to.

The concept of disability is helpful in raising awareness of people’s right to be treated equally and fairly. There is an emphasis on empowerment and society’s responsibility to make ‘reasonable adjustments or amendments’ to make this possible. However, many people with disabilities still need care and support or are dependent on other people in some way in their daily lives. In section 7 on care, support, disability and dementia, we therefore look not so much at the right to receive such care and support but at issues related to the nature of care, support and dependency.

Rights, law and obligations are important but we also need to consider what is needed and approaches that have been adopted so far to make society inclusive. Section 8 is about working towards an inclusive society. Here, we examine debates surrounding the dementia-friendly terminology and concept, and consider what is necessary in order to ensure that people with dementia are meaning- fully involved in making the societies and communities in which they live inclusive.

This discussion paper reflects a range of expert opinion and a balanced overview of different perspectives on the issues addressed. However, we have also included a set of statements which were developed by the two working groups and adopted by the Board of Alzheimer Europe. These statements are aimed at the general public, governments and policy makers, Alzheimer associations, organisations of or for people with disabilities, and regulatory bodies.

At the end of the report, you will find, as mentioned above, an acknowledgement of the important contribution made by members of the two working groups, followed by a glossary of terms and abbreviations and a list of references. We realise that this paper addresses a lot of complex issues and is quite lengthy. We have tried to avoid the use of jargon and to make the report as accessible as possible to a broad audience. However, if you would like to see a short summary of the whole report in a more accessible format and style, please see: http://www.alzheimer-europe.org/ Ethics/Ethical-issues-in-practice.

 

 
 

Last Updated: Tuesday 13 February 2018

 

 
  • Acknowledgements

    The discussion paper “Dementia as a disability? Implications for ethics, policy and practice” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union
 
 

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