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Broader ethical issues at the level of society

2016: Ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease

Having discussed the possible ethical implications of the changing definitions of AD for personal identity and personhood, and for issues related to health and care, we will now turn to broader socio-political issues. The remainder of the discussion paper explores ethical issues linked to:

- Citizenship and equal value/opportunities in society.

- Politics and policy

- Media and public awareness

Citizenship and equal value/opportunities in society

Citizenship, disability and dementia

Citizenship refers to membership status in a political community. It implies both rights and obligations. Being a citizen suggests that the person will have liberty to pursue certain goals and to be free from some forms of pressure to conform. Such rights are codified, for example, in the European Convention on Human Rights (Council of Europe 1953). They apply to all citizens with a degree of agency within a particular (political) community. For instance, citizenship typically implies the right to vote, which can itself be compromised in dementia (Redley, Hughes & Holland 2010), but also duties or obligations: voting itself might be regarded as a responsibility of citizenship. In some countries, voting is obligatory although certain members of society may be “excused” from this obligation.

Dementia can be regarded as a disability, at least in terms of some internationally accepted definitions, such as the definition contained in the United Nations document, the Convention on the Rights of Persons with Disabilities (CRPD). This states in Article 1 that,

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”(http://www.un.org/disabilities/convention/conventionfull.shtml)

The rights set out in the CRPD are in large measure intended to support the person’s standing as a citizen despite any disabilities he or she might have and even though some people with dementia may (as they should be at liberty to do) resist the label of disability. The so-called disability rights movement pursues political activism to secure opportunities and equal rights for people with disabilities, including people with dementia. There has been a move away from a medical model of disability, with a focus on the symptoms and difficulties residing in the individual, towards recognition of the way that society contributes towards disability. To a significant extent, there has also been a movement away from a more biomedical model of disease and towards a more overtly psychosocial understanding of dementia. The work of Tom Kitwood (1997), Steve Sabat (2001) and many others has led to the development of a new culture of dementia care, where the possibility of living well with dementia is emphasised. This approach has tended to stress the importance of the psychosocial environment in determining the wellbeing of people with dementia. Implicit in this work has been the thought that people with dementia can still participate in and contribute to society and, by implication, to the political community as citizens.

Citizenship of people with AD: responsibilities and obligations of individuals and society

What, then, are the implications of the emergence of biomarkers and the possibility of earlier diagnosis of AD (i.e. prior to dementia) for the standing of people with AD as citizens? Citizenship might be affected in a variety of ways, because people might, depending on how they are affected by such information (see earlier section on Personal Identity and Personhood), be more or less likely to engage in activities. They might see themselves as diminished in some way, as less able to participate, or they might, on the contrary, see their lives as being at a point where they need to take a more active stand in the political community, to enable the voices of those under threat of these conditions to be heard more widely. So being diagnosed with earlier forms of AD or being informed about being at risk of developing AD dementia has the potential to affect a person’s standing in the political community and their opportunities in society despite an absence of symptoms of dementia that might actually hinder their participation.

Society has a responsibility towards people with dementia, and we could argue also towards people identified and labelled as being at some point along the AD continuum. Citizenship is not only about exercising agency (i.e. fulfilling one’s role as a member of society with the ability to participate in economic, social and political actions).  It is also about people gaining access to what they are entitled to, based on the fact that they are equal citizens. Bartlett and O’Connor propose a useful definition of what they call “social citizenship”, specifically in relation to dementia.

“Social citizenship can be defined as a relationship, practice or status, in which a person with dementia is entitled to experience freedom from discrimination, and to have opportunities to grow and participate in life to the fullest extent possible. It involves justice, recognition of social positions and the upholding of personhood, rights and a fluid degree of responsibility for shaping events at a personal and societal level.” (Bartlett and O’Connor 2010, 37)

This ties in with the concept of “capabilities” which can be understood as people’s opportunities as well as their abilities to achieve outcomes that they have reason to value. Nussbaum (2011) has identified 10 basic capabilities which governments should strive to ensure and which focus on human dignity. One of these (“control over one’s environment”), covers being able to participate effectively in political choices and being able to hold property, seek employment on an equal basis with others and enter into meaningful relationships of mutual recognition with other workers. This might include the ability to remain an active member of society, to live within a community or to have a say in the way society is run (if these are things a person values). It is also about not being deprived of such capabilities by society (e.g. by ignorance, the way AD is perceived and portrayed, lack of resources and structural discrimination).

The changing definitions of AD call for reflection on responsibilities and obligations of individuals and societies to ensure that people with AD (with and now, also, without dementia) are empowered as citizens, equally valued, and have the same opportunities as other members of society.

Politics and policies

The new model of AD creates responsibilities for policy makers in relation to employment, equal access to goods and services and the provision of appropriate healthcare and support. To develop relevant policies in these areas, policy makers need facts and figures. However, they, like other lay people, may be unfamiliar with the new AD model and this may affect their interpretation of available information and the identification of priorities.

The need for clarity regarding the number of people affected

Misunderstandings about the number of people with AD may occur. Reliable statistics on the incidence of preclinical and prodromal AD (IWG) or MCI due to AD (NIA-AA) are not yet available as there are no prevalence studies. The prevalence of AD dementia is not usually calculated directly but rather on the basis of population statistics and prevalence rates for dementia, with a further estimation then being made of the number of AD cases. Policy makers risk drawing false conclusions about the number of people with AD dementia based on the co-existence of different definitions of AD. They may, for example, wrongly assume that prevalence figures for AD include people with preclinical AD and prodromal AD (IWG) or MCI due to AD (NIA-AA). Such false estimations of the actual number of people with AD dementia may result in false estimations of the need for more support and care for this group.

The widening of the span of AD, to include people who are also at risk of AD dementia, could have a range of implications for policy makers. It could lead to a perceived increase in the number of people with AD and to a sense of greater urgency to take action, based on the observation that more people are affected by AD than in the past and from an earlier age. It could also lead to the normalisation of AD based on the realisation that people can have prodromal AD (IWG) or MCI due to AD (NIA-AA) for many years without it having a significant negative impact on their lives, perhaps suggesting less urgency to take action. The consequences for the wellbeing and quality of life of people with AD are considerable.

Agreeing on public health priorities

The focus of research based on the new AD model has been predominantly on biomarkers and the development of drugs for the secondary prevention of AD dementia. There is a danger of these research goals overshadowing other important areas of research such as non-pharmacological and social science research, treatment for advanced AD dementia or for other causes of dementia and the development of appropriate care and support, all of which may be at least equally important to people with and at risk of dementia. This reflects debates in the 1980s and 1990s in America about the need to prioritise biomedical research and prevention over care, whereby prevention was considered by some as ultimately reducing the number of people requiring care. Ballenger (2006) described this as “medical triumphalism” and the “marginalization of care” and questioned whether there actually needed to be a trade-off between funding for research and funding for caregiving or not. More recently, it has been suggested that research focusing on the prevention of AD dementia nevertheless raises awareness of the need for appropriate support and care for people who already have AD dementia (Molinuevo et al. 2016).  

Recognition of preclinical and prodromal stages of AD (or of MCI due to AD) calls for a response from policy makers to address a range of issues which are not identical to those currently experienced by people within the more general/global classification of MCI or who already have AD dementia. Policy makers need to consider at what point support should be provided, and the kind of support needed and desired at stages of AD which do not involve dementia.

The new category of prodromal AD (IWG) or MCI due to AD (NIA-AA) also raises the issue of equity as policy makers are faced with decisions about the fair distribution of healthcare resources. Respect for the principle of equity requires measures to ensure that people have equal access to diagnosis and subsequent care or treatment. This applies within countries, but also between countries. The research developments discussed here are developments in the higher income countries of the world. The middle and lower income countries are unlikely to see benefits from the research for some time. Indeed, a question can be raised as to whether it is equitable for high income countries to be targeting research funding on people who are essentially well when there are so many people living in poverty and requiring basic care (WHO 2015). The obvious justification would be if the benefits of the new research were likely to reach poorer people too, either directly or indirectly.

Protecting the rights of people with AD

As more and more people are diagnosed at this earlier stage and for many at a younger age, the need to develop measures to protect the rights of people with AD who are still in paid employment or with family responsibilities will become increasingly urgent. Potential risks for the wider population of people with AD (with and without dementia) in certain professional posts (e.g. in connection with transport, health and safety, fund management or responsibility for vulnerable groups) will also need to be considered. Appropriate policies and measures are needed to avoid unfair discrimination, including structural discrimination, whilst protecting people’s rights and wellbeing, especially as some people with preclinical and prodromal AD (IWG) or MCI due to AD (NIA-AA) will never develop AD dementia. At the same time, greater clarity may be needed about personal responsibility and state protection. Three key questions could be asked:

  1. What kind of legal protection is needed for information (including biomarker data) provided by research participants and how can such legal protection be enforced (also when shared between different countries)?
  2. At what point, in what circumstances (if at all) and to whom should a person who has been informed that s/he is at risk for AD or who has been diagnosed with prodromal AD (IWG) or MCI due to AD (NIA-AA) be obliged to disclose such information?
  3. What kind of protection should be provided should such disclosure become obligatory at some point?

The cost of these earlier AD classifications and diagnoses (prior to dementia), which involve amyloid imaging and lumbar punctures, is higher than that of a general MCI diagnosis. Policy makers need to be able to justify the costs associated with diagnosis in the absence of treatment to delay or prevent the onset of AD dementia and of measures leading to better patient management and health outcomes. Measures are needed to ensure that the right “not to know” about a diagnosis or risk status is respected. Although a register may be beneficial in terms of monitoring public health, the issue of potential unfair discrimination, which might occur as a result of reporting diagnostic status, needs to be addressed. Even though the pre-clinical classification is currently only used in to the research domain and should therefore not appear in health records, measures are needed to ensure that disclosure of that at-risk status does not ultimately lead to discrimination in the fields of employment and insurance.

Media/Public Awareness

The media lexicon and its potential impact on the general public

The words and images we use can strongly influence how others treat or view people with Alzheimer’s disease (AD). Language is a powerful tool. Words and images frame public discourse and this means we have a responsibility when we use language, both verbal and visual. It has been recognised that AD dementia has a social, physical and psychological impact on people and that dementia is also a form of disability (Kitwood 1990 & 1997; Alzheimer Europe 2013). However, the changing definitions of AD has resulted in a growing need to communicate, in addition, new scientific representations of AD to various audiences including, amongst others, lay people and policy makers.

“The media, in its numerous forms, are probably the strongest vehicle for transmitting and popularizing these representational forms, which people then incorporate into their own lives. Furthermore, information presented through newspapers, the internet, and television frequently results in the over simplification of scientific ideas while simultaneously revealing core values of a given society.” (Leibing 2015, 282)

Given the widely acknowledged stigmatisation of AD dementia, if we seek a public discourse that is empowering and inclusive of the diverse experiences of people with AD, then we must choose language that supports that goal. Popular media use a lexicon that is reflective of the wider society it inhabits and portrays the commonly held beliefs and perspectives that it either supports or opposes. However, popular media not only reflects society’s values but also helps promote and re-inforce beliefs, stigma and prejudice.

A study of dementia in the media by the University of Worcester (Peel 2014) found that “a panic-blame framework was evident in much of the print media coverage.” The report showed that “dementia was represented in catastrophic terms, such as a ‘tsunami’ and ‘worse than death’, juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to ‘stave off’ the condition.” We are all familiar with the stigmatising language and visuals used to highlight dementia in the media. Worldwide representative examples include “Robin Williams driven to suicide by Lewy body dementia” from The Washington Post, “Dementia epidemic looms with 135 million sufferers seen by 2050” from Reuters and “Experts warn of dementia ‘time bomb’ in the next 25 years” from The Irish Times. Pictures often used are of an older person’s hands; divorced from the body, from identity and from self.

These types of headlines create fear and anxiety (Peel 2014) and the media lexicon in turn influences and impacts across all sectors. Yet we know that dementia is not necessarily a defining aspect of life and that life does not stop when dementia starts; this can be conveyed in the verbal and visual language we use. Likewise using negative or derogatory language to describe AD or a person with AD can contribute to and re-inforce stigma and discrimination. This becomes even more complex if a range of relatively complicated definitions are used in a clinical setting. For reports and general mainstream media, information needs to be clear, concise and unambiguous. The lexicon we use in framing public discourse impacts not only on private perceptions but also influences policy approaches. While instances of exemplary experiences with health and social care services and personnel have been noted (Trinity College Dublin 2006), the opposite has also been found in the form of structural stigma (mentioned earlier in the section on Personal Identity and Personhood). This may also speak to the value being placed on both the person with AD dementia and the carer borne out of understanding or lack thereof. This is informed by general public discourse and the popular lexicon used within it.

Addressing the knowledge gap in relation to the new definitions of AD

With existing lack of knowledge and understanding on the part of the media, how can they sensitively convey various classifications, including those of AD prior to AD dementia? In practice, we are in fact only at the start of a process of media developing an understanding of AD as newly redefined and reconceptualised, with its nuances and ranges. It is also relatively recently that national working groups comprised of people with dementia, who speak up for themselves with the consequence of contributing to changing perceptions, have been formed and developed. There is a growing number within Europe plus a European Working Group of People with Dementia (Alzheimer Europe 2016). Such groups may eventually need to consider whether to extend membership to people who have the AD pathology but as yet no symptoms or just symptoms of mild cognitive impairment so that they too can have a voice and influence perceptions, policies and practices.

This knowledge gap presents opportunities. The dialogue in relation to the language and also the visual narrative used to describe AD can change and indeed is changing. Alongside the dramatic headlines, others are beginning to emerge. Two recent examples from Irish national newspapers (The Irish Examiner and The Irish Times) read: “Living with Alzheimer’s” and “I’m still the same woman I was when I got diagnosed with Alzheimer’s”. This language counters stereotypical associations with the illness and also associations with the word disease itself. Using pictures of the real, ordinary person being described creates further impact. By adopting a more personal, caring and human rights approach in verbal and visual language, re-framing occurs through the use of “counterframes”: from loss of identity to change and humanity; from an enemy and thief to a social norm; from carer burden to ‘each in turn’ and from fear of death to seizing life (Van Gorp, 2012). In the same vein, ethicists have argued for the importance of ‘counter-stories’, focusing on relationships and care, which nuance the dominant stories in society which reproduce the standard view of independence and rationality (Lindeman Nelson 2001)

Van Gorp (2012) notes, however, that it can be more difficult to mainstream the counter-frames because it seems the media do not want to hear these positive stories. But, to the extent that the counter-frames are accepted, they may have positive results, including a positive impact on policy and services. Some guidance exists on how to portray people with dementia, either visually, in writing or through images. Examples include “Guidelines for reflection linked to the portrayal of dementia” (Alzheimer Europe 2013) and “Dementia words matter: Guidelines on language about dementia (DEEP 2014). A guide for journalists has also been produced by “YoungDementia UK” (2016), which not only provides guidance on language to avoid or use, but also essential facts and figures to help ensure a balanced portrayal of dementia (early onset in this case).

Moving towards a lexicon of the new definitions of AD for the wider public

We now need a lexicon for the wider public that encompasses the concept of AD as a continuum and as a condition (or underlying pathology), which incorporates stages prior to AD dementia. At the same time, work is still needed to change the public view, perception, dialogue and impact of AD dementia. A basic understanding of AD dementia must be in place before further definitions of AD are introduced. Yet, the new terms for AD have already been introduced, albeit it in the research setting and to some extent in clinical practice, and the changing definition of AD is an ongoing, dynamic process. In addition to the media sector, a language guide should also be utilised by the research and clinical sectors working in the field of AD for their communication with research participants, patients and the media. Guidance on the use of language should also be provided to politicians and policy makers. 

 

 
 

Last Updated: Friday 10 February 2017

 

 
  • Acknowledgements

    The discussion paper on ethical issues linked to the changing definitions/use of terms related to Alzheimer’s disease received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of this publication represents the views of the author only and is his/her sole responsibility. It cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.
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