2013: The ethical issues linked to the perceptions and portrayal of dementia and people with dementia
About perceptions and the portrayal of dementia
People make sense of dementia through the meanings and explanations they construct as a result of their personal observations and experience, and through their direct and indirect interaction with other people. Their perceptions, not entirely conscious or deliberate, reflect complex processes of attending to certain factors and disregarding others. Perceptions develop through interaction between what people see and hear and their past experience, knowledge, beliefs and expectations. Perceptions of dementia are also influenced by official discourses from governments, scientists and other groups with expert knowledge or specific motives. Such perceptions and discourses are promulgated through official channels, culture, education, the healthcare system, entertainment and the media. Certain characteristics and ways of making sense of dementia become emphasised whilst others are given little or no attention.
Perceptions are often expressed through words and may be associated with images, including metaphors. Words and images can be powerful and affect the way that we think about the concepts to which they apply, such as dementia and people with dementia. George (2010) describes this in terms of a moral challenge linked to semantic choice, whereby subtle alterations in the way that we talk about certain conditions may contribute to more humane approaches to them. This may, in turn, affect the way that people with dementia are treated within society.
The way that people perceive dementia contributes towards the way that they portray it to others within the social and professional domains in which they operate and,vice versa,the way that dementia is portrayed affects how it is perceived. A balanced portrayal of dementia is needed. It is important to understand the way that people from all walks of life (such as the general public, people with dementia, carers, film producers, healthcare professionals, scientists and politicians) perceive and portray dementia as they are all involved in the social construction of meanings associated with dementia (i.e. definitions, understanding) and, hence associated feelings about dementia.
In this report, we have tried to give equal importance to different perceptions and portrayals of dementia and to maintain a neutral stance when describing them. However, we realise that we are part of the society in which the meanings that have come to be associated with dementia are constructed. Such meanings are not static. They are constantly being challenged and renegotiated within a particular social, cultural and historical context and we can, at best, simply claim to have tried to be objective. Brief details of the background of the authors behind this text can be found in Appendix 1.
People with dementia (“us” not “them”)
This report is about how dementia and people with dementia are perceived and portrayed. This unavoidably singles out a group of people who share a common characteristic, namely dementia. People with dementia are present in all sections of society and are a heterogeneous group. Dementia is just one aspect of their identity to which they may accord varying degrees of importance. People with dementia are part of the society which perceives and portrays dementia, and in which the meaning and significance of dementia are constructed. In this report, their perspective on this topic is mentioned, where known, in relation to the various sub-topics addressed, but also separately at the end of the report in relation to the general issue of the way that dementia is perceived and portrayed within society. We will occasionally refer to people with dementia as “they” in order to avoid repetition and clumsiness of expression. However, we would like to emphasise that “they” (i.e. people with dementia) not only have dementia but are at the same time our friends, colleagues, neighbours, partners, and relatives and, in some cases, our children or indeed ourselves. The designation of people with dementia as a separate group should not be considered as reflecting the core feature of their identity but just one common feature amongst a multitude of others which differ.
Explanation of key concepts
A report about the way that dementia is perceived and portrayed requires, for the sake of clarity, some kind of explanation as to what dementia is. The following definitions are taken from the website of the Alzheimer’s Society of England, Wales and Northern Ireland:
“The term dementia describes a set of symptoms that include loss of memory, mood changes, and problems with communication and reasoning. There are many types of dementia. The most common are Alzheimer’s disease and vascular dementia. Dementia is progressive, which means the symptoms will gradually get worse.
Alzheimer's disease, first described by the German neurologist Alois Alzheimer, is a physical disease affecting the brain. During the course of the disease, protein 'plaques' and 'tangles' develop in the structure of the brain, leading to the death of brain cells. People with Alzheimer's also have a shortage of some important chemicals in their brain. These chemicals are involved with the transmission of messages within the brain.”
There are also a range of national, European and internationally recognised definitions and diagnostic criteria which serve to determine whether a person has dementia and to identify the type of dementia that s/he has. Dementia and the associated diseases are often defined in terms of symptoms and typical prognosis. However, as pointed out by the Alzheimer’s Society (2012), “While there are some common symptoms of Alzheimer’s disease (AD), it is important to remember that everyone is unique. No two people are likely to experience AD in the same way”.
As will become clear as you read through this report, the above brief definitions of dementia and AD reflect an explanatory model which is fairly medically orientated. This should not be interpreted as reflecting the full understanding of dementia and AD of the Society quoted as the quotes are selective. Moreover, people do not all perceive dementia in the same way and even those who share the same understanding or accept the same definition may perceive the experience of dementia, its impact on people’s lives and on society, as well as the way that people with dementia are considered by society and treated, in different ways. Apart from the fact that people do not all consider dementia or the various forms of dementia a medical condition (please see the section on explanatory models of dementia), medical definitions of dementia are insufficient to understand what dementia actually means to people. The words and metaphors that people use when talking about dementia, the associations they make between dementia and other concepts and the way that dementia is portrayed all provide insight into the emotional, psychological and social significance that it has for different people.
Dementia (and its various forms) has been described as a stigma by lay people and healthcare professionals (e.g. Alzheimer’s Society, 2008; Batsch, Mittelman & Alzheimer’s Disease International, 2012; Gove, 2012; Nolan et al., 2006; Swane, 1996, Vernooij-Dassen et al., 2005; Werner and her colleagues), numerous Alzheimer associations, national governments (as expressed in national dementia plans), the European Commission (2009) and the World Health Organization(2012). References to dementia as a stigma can also be found in personal accounts by people with dementia and informal carers. Often, a clear definition of what is meant by stigma is lacking. For some people, it might be used to refer to dementia being a taboo or something shameful, for others the devaluation of people with dementia and for yet others the attribution of a negative label or in relation to perceived discrimination against people with dementia. As frequent reference is made to stigma in connection with the ethical implications of various ways of perceiving and portraying dementia, some clarification is first needed as to what we mean by stigma.
In Goffman’s seminal work on stigma, the term is used to refer to the attribute which is deeply discrediting in that it reduces someone in other people’s minds from a “whole and usual person to a tainted, discounted one” (Goffman, 1963, p12). Through the process of attribution of meaning, particular attributes come to be linked to dispositions that discredit the bearer and “spoil” his/her identity (Jones et al., 1984, p.8). It is the social meaning and significance that people attribute to various attributes which make them discrediting and the psychological and social consequences of the attribute, rather than the attribute itself, which often have the strongest negative impact on those who have it. People who develop dementia are likely to be aware of the way that it is perceived in society, irrespective of whether they share, internalise or challenge those perceptions.
The term stigma is also used to describe a complex social phenomenon or process (sometimes called “stigmatization”). For Link and Phelan (2001; 2006), stigma is conceptualized as the convergence of a set of components: labelling, negative stereotyping, separating “us” from “them”, emotional reactions, power, and status loss and discrimination. Attribution models of reactions to stigma focus on whether people with a particular stigma are considered as being either dangerous or responsible for having it (Corrigan et al., 2003; Weiner et al., 1988). In addition, there are factors which are believed to increase the likelihood of a particular attribute becoming a stigma. These include concealability (the extent to which it is visible or can be hidden), course of the mark (whether it becomes progressively worse), disruptiveness (whether it hinders or strains interaction with other people), aesthetic qualities, origin (whether the person is responsible for having it) and peril (Jones et al., 1984) or threat (i.e. what is worrying or threatening about the stigma) (Stangor and Crandall, 2003). The following definition focuses on health-related stigma.
“Stigma is typically a social process, experienced or anticipated, characterized by exclusion, rejection, blame, or devaluation that results from experience or reasonable anticipation of an adverse social judgment about a person or group. The judgment is based on an enduring feature of identity conferred by a health problem or health-related condition, and the judgment is in some essential way medically unwarranted. In addition to its application to the persons or group, the discriminatory social judgment may also be applied to the disease or designated health problem itself with repercussions in social and health policy. Other forms of stigma which results from adverse social judgments about enduring features of identity apart from health-related conditions (e.g. race, ethnicity, sexual preferences) may also affect health; these are also matters of interest that concern questions of health-related stigma.” (Weiss and Ramakrishna, 2004, p. 13)
So much has been said and written about the stigma of dementia that it might sometimes be considered as a fact that dementia is a stigma. This is only the case to the extent that it continues to be socially constructed as such and that this is reflected in the way that people with dementia are perceived, portrayed and treated by others, as well as in the way that they perceive themselves as having a stigma. Link and Phelan (2001) use the term label to refer to the observed socially salient attribute (in this case dementia) rather than the term stigma. A label, they claim, is something that is affixed and makes no claims about the validity of the designation. This challenges the taken-for-granted nature of socially salient differences. Nevertheless, many of the issues covered in this report reflect the various components, contributing factors and consequences associated with it. Consequently, stigma is a recurring topic.
Ethics is a branch of philosophy which seeks to address issues related to concepts of right and wrong. It is therefore closely linked to morality in that it is about what morally ought to be the case rather than how things necessarily are. It is about how we ought to act towards one another and covers numerous decisions we make in everyday life, including those with implications for life or death (Mattiasson and Hemberg, 1998).
There are different approaches to ethics. Communitarian ethics maintains that moral thinking has its origins in the historical traditions of particular communities. Consequently, it is a cultural rather than abstract concept in that communities share values, customs, institutions and interests. However, an over-emphasis on communitarian ethics might result in a “tyranny of the majority” in which the majority defines what is beneficial, morally right or “a good life”, which may result in an unfair outcome for some groups of people (Petrini, 2011). Some ethical principles are widely accepted across cultures, such as the ethical principle ‘to do no harm’, though the subject, object and nature of harm varies across temporal and cultural contexts.
Some approaches to ethics focus on the outcome, judging whether the consequences of an act are good or bad (Noble-Adams, 1999) or what the best outcome would be for the greatest number of people (Peach, 1995 in Aita and Richer, 2005). Another approach involves considering whether the nature of an act itself is right or wrong irrespective of the consequences because something is believed to be good if it is consistent with moral rules and principles. This is often described as a deontological theory and a classic example is Kant’s theory.
There are several ethical principles which are frequently mentioned in the context of healthcare and ethics. Perhaps the most well-known are autonomy, beneficence, non-maleficence and justice (Childress and Beauchamp, 2001). The capacity for autonomy has been conceptualised in different ways. For clinicians, the capacity for autonomy tends to be conceptualised in terms of the capacity to make meaningful decisions (according to Appelbaum in relation to specific tasks), whereas for moral philosophers, the emphasis is on the capacity to have what Dworkin describes as “critical interests” and Jaworska as “values” (Gzil, 2011). “Care ethics” places particular emphasis on the care relationship/process (characterised by reciprocity), on being receptive to what happens to the person, and on respect and trust (Mahieu and Gastmans, 2012). Related concepts include dignity, singularity (focusing on the unique nature of each person), historicity (reflecting the historical dimension of human existence) and relationality (considering what is meaningful to each person in terms of their relationship to others). Such concepts are relevant to the way that people with dementia are considered and treated within society irrespective of whether they are receiving care. Finally, Petrini (2011) argues in favour of an ethical approach based on “personalism” which strives to achieve common good by promoting and enhancing the good of the individual guided by values such as respect for life, sociality and solidarity, and responsibility.
The importance of looking at the way dementia is perceived and portrayed
The way that people perceive and portray dementia can have implications for the way that people with dementia are valued and treated, and how dementia is addressed within society (e.g. with regard to the standard of care they receive, the importance given to medical treatment, their involvement in research and the kind of research carried out, social inclusion and the extent to which their human rights are respected). This may have a positive or negative impact on the lives of people with dementia, now and in the future, individually and as a group. Perceptions are communicated to people with dementia through words, gestures, intonation and even avoidance. In addition, people develop dementia. They were not born with it and it is likely that throughout their lives, they also had certain perceptions of dementia. Consequently, when a person suspects or finds out that they have dementia, those perceptions may influence their expectations in relation to their future lives and to how they will be treated by other people, as well as their self-concept and self-esteem.
Firstly, the expectations, fears and beliefs about dementia may affect people’s readiness to seek a diagnosis. Several studies confirm high levels of fear amongst lay people (Cutler and Hodgson, 2001; Pin-le-Corre and Cantegreil, 2009; Tsolaki et al., 2009, Werner, 2002; Werner and Davidson, 2004; Wortmann et al., 2010). In a survey carried out by the Harvard School of Public Health and Alzheimer Europe involving 2,678 randomly selected adults from France, Germany, Poland, Spain and the US, participants were asked to choose which disease they were most afraid of getting from a list of seven diseases including cancer, heart disease and stroke (Blendon et al., 2012). Around a quarter of adults in four of the five countries stated that they most feared having AD. Although some studies have indicated complacency amongst the general public about developing dementia (Lee et al., 2010; Low and Anstey, 2009; Sahin et al., 2006; Yeo et al., 2007), it was cited as the second most feared condition after cancer in all countries except Poland.
Diagnosis can be beneficial provided that it is timely and not just early or too early, helping people to understand changes they are experiencing, giving them the opportunity to make plans for their future whilst they are able to do so and enabling them to give informed consent to current treatment and support. In many cases, diagnosis opens the door to treatment, care and support, which can sometimes be beneficial to informal carers who provide much of the care and support needed, and often have other personal and professional commitments alongside. Certain perceptions of dementia may hinder help-seeking such as the perception of AD and other forms of dementia as being part of the natural ageing process, due to spiritual forces, something to be ashamed of or a stigma.
Stigma has been associated with delays in timely diagnosis (Cahill et al., 2008; Gove, 2012; Husband, 2000; Iliffe et al., 2003; Kaduszkiewicz et al., 2008; Pentzek et al., 2005; Van Hout et al., 2000; Vernooij-Dassen et al., 2005) and is also believed to interfere with the disclosure of the diagnosis, which is part of the diagnostic process (Bamford et al., 2004; Boise et al., 1999; Brodaty et al., 1994; Cahill et al., 2008; Iliffe et al., 2005). This may lead to inequity in the provision of care as people with dementia, compared to people with other conditions, are not accessing the care they need. Also, they may be left in doubt or ignorance that they have dementia, whilst other people have such information about them. They are denied the opportunity to make truly informed decisions about their care, treatment and future lives, and may even be placed in a vulnerable position.
The way that people perceive and portray dementia reflects the meanings they attribute to it. It is therefore essential to look at those perceptions and portrayals. Through awareness and reflection on how people make sense of dementia, how they feel about the prospect of one day having dementia and about the different ways they talk about and represent dementia, it may be possible to gain insight into those meanings. Such insight forms the basis for possible change, where change might be beneficial for people with dementia and their carers, and for the promotion of positive attitudes and behaviour which are conducive to respecting their personhood, individuality, wellbeing and human rights.
Ethical reflection on the way that dementia is perceived and portrayed
To date, Alzheimer Europe’s work on ethical issues has focused on issues which involve some form of action such as the use of assistive technology, the provision of end-of-life care, carrying out research and the restriction of freedom of people with dementia. Although the portrayal of dementia often involves communicative action, such as writing, talking and acting, perceiving and portraying dementia involve thought processes and beliefs, which may sometimes be intentional and sometimes not. This makes the overall theme of this year’s report slightly more abstract.
Most people consider what they perceive as “reality” or “fact” and many perceptions are taken-for-granted as shared realities, in that people have co-constructed them within society through interaction with other people. This reflects the social constructivist paradigm, which rests on the assumption that there is not one single reality or truth which, if we tried hard enough, we could discover. Rather reality is understood as being multiple and constantly in the process of construction. Different people have different realities. Many of these realities are shared as they are constructed and negotiated (and even challenged) through interaction with other people, either personally or through shared cultural, educational and social channels. However, different people have different subjective realities.
Consequently, it is difficult to say that one person’s perception is “wrong” or “unethical” because it is simply their reality born out of their social, cultural, cognitive and emotional experiences. The same could be said for the portrayal of dementia provided that people portray dementia as they perceive it and not based on ulterior motives.
Even though our perceptions result from complex and often unconscious processes, nevertheless, the way we perceive and portray dementia has implications for the way that we act towards people with dementia and how we address the issue of dementia within society (e.g. in terms of care, treatment, social inclusion and human rights). Such acts may have a positive or negative impact on the lives of people with dementia, now and in the future, individually and as a group. We can therefore reflect on the possible consequences of various perceptions and portrayals of dementia in relation to a range of ethical principles and concepts.
Perceptions cannot simply be changed. Without a full understanding of the individual, social and cultural context of each perception or portrayal described, we cannot judge which perceptions and portrayals of dementia will contribute towards unethical treatment or be potentially harmful to people with dementia. Furthermore, we acknowledge that each perception and portrayal could be interpreted differently and reflect different meanings for different people. We therefore seek to raise awareness and foster reflection about the possible ethical implications for people with dementia (and future generations of people with dementia) of being perceived or portrayed in certain ways.
Our aim is not to enter into philosophical debates about dementia-related concepts or to take a position on their accuracy, logic or desirability but simply to present the perceptions and portrayals of non-philosophers and consider the possible ethical implications of these for people with dementia.
The structure and scope of the report
In Part 2 of this report, we address the way that dementia is perceived and portrayed, covering a range of explanatory models (reflecting understandings of the origins or cause of dementia), the characteristics of dementia and people with dementia and the perceived impact of dementia. We also look at how dementia has been portrayed in the media and films. In Part 3, we look at the perceptions of those who are perceived and portrayed, namely the perceptions of people with dementia themselves, as well as their reactions to current perceptions and portrayals of dementia. Finally, in part 4, we present a set of conclusions which might offer guiding principles to bear in mind rather than guidelines on how to act.
The sections in the report entitled “ethical implications” (at the end of each sub section, or in some cases at the end of a group of sub-sections) are derived from the ethical reflection of the working group and provide an overview of ethical arguments and conclusions in relation to the topics discussed. There are very few references in these sections, as the points made are the reflections of the working group and not based on knowledge derived from empirical studies, established causal relationships or personal testimonies. Where we have grouped together two or three linked topics within a main theme, we address the related ethical issues at the end of that sub-section. This is then separated from the subsequent topics within that theme by a divider - *******.
We address a wide range of issues in our report but several areas are not covered. For example, we did not address the way that dementia is portrayed in educational materials and awareness raising campaigns, or the way that it is perceived and portrayed by Alzheimer associations, government agencies and policy makers. This was primarily due to time constraints and the need to limit the overall length of the report. Also, when reflecting on various ethical issues, we address some topics which could also be considered as perceptions of dementia (particularly in relation to stigma and some of its components and contributing factors). To avoid repetition, we have addressed these topics mainly in the sections on related ethical issues and not as separate sections in Part 2 of this report.
The working group and methodology
The report is the result of deliberations by a working group which was specifically set up with the aim of identifying different ways that dementia and people with dementia are perceived and portrayed, and reflecting on the ethical implications of this for people with dementia. The group, which was chaired by Dianne Gove from Alzheimer Europe, included participants from a wide range of backgrounds including old age psychiatry, psychology, dementia, philosophy, cultural sociology, nursing and media studies. One member of the group had dementia, one was a current carer and some had past experience as carers. Alzheimer Europe is extremely grateful to the members of the working group who are listed below in alphabetic order. Further details about the participants can be found in Appendix 1.
- Dr Debby Gerritsen, Radboud university medical center, Nijmegen (Netherlands)
- Ms Bénédicte Gombault, King Baudouin Foundation, Brussels (Belgium)
- Dr Dianne Gove, Alzheimer Europe (Luxembourg)
- Dr Fabrice Gzil, Fondation Médéric Alzheimer, Paris (France)
- Ms Jana Kasparkova, ICU in Teaching Hospital, Plsen and Faculty of Humanities, Charles University in Prague (Czech Republic)
- Prof. Jan Oyebode, Bradford Dementia Group, University of Bradford (UK)
- Ms Sirpa Pietikaïnen, MEP (Finland)
- Dr Christine Swane, EGV Foundation, Copenhagen (Denmark)
- Associate Prof. Baldwin Van Gorp, KU Leuven (Belgium)
- Ms Aino Valtanen, Assistant to MEP (Finland)
- Rev. Richard Wallace (UK)
- Dr Daphne Wallace (UK)
A broad overview of the literature was made, drawing on a wide range of sources such as articles in peer reviewed journals (identified through a search of several scientific databases), publications, reports and other studies, personal accounts of people with dementia and media accounts. The sub-topics addressed were identified by means of chunk coding and group discussion. The various quotes have been included to provide a meaningful illustration of the way that dementia is portrayed and perceived. Overall, we have tried to demonstrate the diversity of perceptions and portrayals, rather than provide a summary of a kind of generalised overall perception/portrayal.
The working group met on two occasions in Brussels in 2013, each time for a full day’s discussion and exchange of ideas covering the structure and content of the report. Members of the group also shared their expertise on various relevant issues, commented on the literature review, discussed the possible ethical implications of the issues addressed and contributed towards the development of the ethical recommendations/position. Various drafts of the text were circulated electronically and members of the group reworked the report and debated various issues until a consensus was eventually reached and the final text presented to the board of Alzheimer Europe for approval. The report was formally approved and adopted by the Board in December 2013.
Last Updated: Monday 24 February 2014