How dementia is perceived and portrayed
2013: The ethical issues linked to the perceptions and portrayal of dementia and people with dementia
- Explanatory models of dementia
- Strategic communication
- The person with dementia
- The characteristics/attributes associated with dementia
- The portrayal of dementia in the media
- The portrayal of dementia in films
This section is about the words we use when writing or talking about dementia and people with dementia. Language has been described as “a powerful and ever-evolving force for social change” (Whitehouse, 2013, p.107), with keywords sometimes capturing our imagination, conjuring up vivid images (especially through the use of metaphor) and even serving to achieve strategic goals (see section on “strategic communication”). On the other hand, people sometimes use words out of habit, without reflecting on the meanings and language use is also dependent on numerous factors such as who is speaking and to whom, the context, the mood or atmosphere, the person’s feelings about dementia, whether the person is comfortable with the topic, as well as factors linked to specific cultures (e.g. history, traditions, literature, beliefs and linguistic norms). Words represent concepts and reveal something about the taken-for-granted reality of our social worlds. In this section, we will examine:
- developments in terminology,
- medical terms,
- informal or descriptive terms,
- euphemisms and terms with derogatory undertones.
Developments in terminology
As mentioned earlier, a clear differentiation between different types of mental disorder and what is now recognised as dementia did not exist for many years. Terms which were used in the past, which seem to describe what we now call dementia, include senior idiocy, foolishness associated with age, dotage and morosis (Berchtold and Cotman, 1998). These terms highlight the loss of reason more than the loss of cognitive functions such as memory, which creates an association with mental disorder (sometimes referred to by lay people as madness or insanity). In the literary world, Shakespeare nevertheless made a clear distinction between “senile decay” and “plain madness” and described the characteristics of each (Mahendra, 1987).
In 1907, Alois Alzheimer reported the case of a middle-aged woman with a specific disease which he considered to be distinct from “senile dementia” but this specificity was later questioned (Derouesné, 2008). Nevertheless, during the 1960s, the terms “dementia of the Alzheimer’s type” (DAT) and senile dementia of the Alzheimer’s type (SDAT) started to be used. The term “Alzheimer’s disease” tended to be used to refer to certain cases which would otherwise have fallen into the category of “pre-senile dementia”, but was later also applied equally to cases of “senile dementia”. In this way, the term lost its association with senility as the reference to age was dropped (Swane, 1996). The implication of this was that cognitive decline was no longer officially construed as a condition of old age. On the other hand, debates continue about whether AD in younger people should not actually be considered as a separate disease to that in older people as was initially the case.
It is important to realise that whilst AD is generally considered to be the most common form of dementia, there are over a hundred different diseases which can lead to dementia. Some are named after the scientists who first identified them, whereas others are named on the basis of prominent characteristics or underlying causes. As AD is the most common form of dementia, these other forms tend to receive less attention. The focus on AD and memory problems may lead to the specific features of other forms of dementia being overlooked. For an overview of different types of dementia, please see: http://www.alzheimer-europe.org/Dementia/Other-forms-of-dementia.
In some cultures, people are more comfortable with the term “dementia” and avoid saying “Alzheimer’s disease” whereas in others, the exact opposite is the case. Such differences may occur in populations using the same language and even amongst people from different regions.
In the context of a qualitative UK-based study into GPs’ perceptions of dementia, most preferred the term “dementia” (Gove, 2012), whereas in two qualitative studies involving Australian GPs, avoidance of the term “dementia” and a preference for euphemisms, such as “memory problems”, were reported (Phillips et al., 2012; Robinson et al., 2008). In all three studies, GPs were influenced in their choice of words by their perception of what the terms signified for lay people.
This was echoed by Girard and Ross (2005) who, commenting on the use of the terms “dementia” and “demented”, suggested that both were accepted terms in the healthcare profession with no pejorative connotations, but added that the same could not be said regarding the use of these two terms by the general population for whom they were synonymous with “madness” and being “crazy” or “insane”. In the Czech Republic, healthcare experts often specifically refer to the “syndrome” of dementia (Holmerova et al., 2009 and 2010), which perhaps serves to emphasise that it is a reference to a varied medical condition. In the UK, some healthcare professionals have reported being asked not to mention “the D word” (Milne, 2010), whereas in the US, it is “the A word” that is considered problematic (Kissel and Carpenter, 2007).
“I get asked all the time, “Please don’t mention the A word”. That’s what it’s called; it’s called the A word. And I will be sensitive to that.”(Kissel and Carpenter, 2007, p.277)
Different lay people may have different preferences for terms, such as dementia, Alzheimer’s disease or terms denoting other forms of dementia. However, there is also some evidence that many lay people do not understand the difference between dementia and Alzheimer’s disease and sometimes the terms are used interchangeably (Devlin et al., 2007). In addition, lay people may not even associate symptoms of AD with either term. In a study by Werner and Davidson (2004), lay people were given a vignette of a person with AD and asked to state what condition the person had. Although three quarters recognised a health problem, only one third correctly identified the person as having AD. An additional 6% described the person as being confused, 13% as having a memory problem and 14% as having orientation problems. The different terms used by lay people for dementia and AD may be based on classifications which do not reflect those used by healthcare professionals and researchers. Some healthcare professionals and service providers are also unsure about the difference between the two terms. To complicate matters, there are now differences in the official terminology used in the Diagnostic and Statistical Manual of Mental Disorders V (described earlier) and the International Classification of Diseases published by the World Health Organisation.
In some languages, words derived from medical terms are used to label people with dementia or AD. In France, for example, a person might be referred to as a “dément”, an “Alzheimer” or an “Alzheimérien” (Ngatcha-Ribert 2004). In the Netherlands, there is a noun ‘dementerende’ (a person who has dementia), which is no longer very common but is still used by some care professionals.
Informal or descriptive terms
In 1998, Braun and Browne explored perceptions of dementia of Asian and Pacific Islander Americans, covering 5 major subgroups: Chinese, Japanese, Filipino, Vietnamese and Hawaiian. They provided information about various terms used for dementia and for people with dementia. Chinese immigrants in Honolulu, for example, reported a few Cantonese phrases such aslo ivan chi oi zeng(confusion in old age),fan low wang tong(old return to youth) andsun fa(confused and of a different spirit). Amongst the Japanese immigrants, the termbokeruwas used which was translated as “to go senile” or “to become forgetful in old age”. Participants originating from the Filipinos reported terms such asnagbabalik sa pagkabata(going back to childhood),tumatandang paurong(growing old backwards),utianin(occasional forgetfulness),wala na (gone, there is none) andtapos na(done or finished). The Japanese immigrants mentioned another term (kichigai) which means crazy or insane but this was mostly associated with psychiatric problems. Similarly, the termkabaw(from Ilokano, the language from the northwestern provinces of the Filipines) was also used broadly to refer to people who are considered “forgetful, retarded or otherwise impaired mentally”. With regard to the terms used to refer to cases of probable dementia, the different terms mainly reflect a perception of dementia as a combination of being old, forgetful and confused, but also of reverting to childhood and in some cases of a loss of one’s spirit. As mentioned earlier, the belief that dementia was a natural part of the ageing process was stated. It is not clear from the report to what extent the above-mentioned terms were used solely by lay people or also by medical professionals. A series of focus groups and interviews about the perceptions of African American, Chinese and Latino carers in the United States also revealed that signs of early memory loss were considered as normal ageing and described in terms which reflected a disease of old age, memory loss linked to old age and bad “feng shui”, and madness, respectively (Mahoney et al., 2005).
Euphemisms and terms with derogatory undertones
Terms which are frequently used to refer to people with dementia are sometimes also applicable to people with a wide range of mental disorders or psychiatric symptoms. Examples of such terms, reported mainly in qualitative studies, include “turning dotty”, “losing your marbles”, gone “doolally”, being “batty”, not being “right in the head”, gone “gaga” and “losing it” (Corner and Bond, 2004, Gove, 2012; Milne, 2010).
“Oh, I’m turning into a typical dotty old lady; I can’t remember a thing. My memory is so bad these days.”
“I go upstairs and forget what I’ve come for (……/…..) I think Oh God! I’m losing my marbles.”
(Corner and Bond, 2004, p. 147).
In a small-scale qualitative study, which involved asking twelve men and women in the early stages of dementia what they thought other people understood by the terms dementia and Alzheimer’s disease, terms with similar connotations were mentioned such as “demented”, “short on top”, “a screw loose”, “a bit funny”, “crackers” and “need to be locked up” (Langdon et al., 2007). Some of these terms are similar to those used by American schoolchildren to describe mental illness in a study by Rose et al. (2007).
Euphemisms are used by healthcare professionals as well as by lay people (Downs et al., 2002; Gove, 2012; Phillips et al., 2012). For example, 94% of a sample of 114 GPs attending a training session on dementia in Scotland revealed that they only used euphemistic terms (such as memory problems and confusion) when telling a person with dementia about the illness (Downs et al., 2002).
Some terms are used euphemistically, others in a derogatory manner and sometimes, the difference between the two can only be detected in the manner and context in which the terms are used. The term “demented” is unusual as it continues to be used in some medical circles and by some researchers in a neutral manner (i.e. without any desire to be offensive) even though it is increasingly considered as being offensive. This may be due to its original meaning (i.e. “out of one’s mind”) but also as the term “demented” can be used in English in a derogatory manner to refer to a person who is considered insane based on the now obsolete verb “dement” (to drive mad) (Douglas Harper, 2012); and because it turns a description into a label for the whole person, thus completely dominating their identity.
Related ethical issues
Terms used to refer to dementia and people with dementia convey information about the perceived origin, nature and experience of dementia. This may affect the way that people with dementia perceive themselves and are treated within society, thus having an impact on quality of life, self-esteem and social inclusion. Depending on the situation and the people involved, this may result in discrimination such as people with dementia being denied access to certain nursing homes or to operations. Many of these issues have been associated with stigma through the concept of labelling. Labelling is part of the process of stigmatization but it does not necessarily cause stigma. Lots of groups in society are labelled (e.g. cyclists, volunteer fire-fighters and brunettes) but not stigmatized. When the label is socially salient and associated with a series of other factors (e.g. stereotyping, cognitive separation, loss of status, etc.), stigmatization may occur. For further details, please see the definition of concepts in the introduction).
Concerns about labelling
Whilst labelling can have a negative impact, labels can sometimes have a positive impact, implying, for example, that a person is not to blame for their condition and resulting in positive feelings towards the person (Weiner et al., 1993). In an American study involving psychology students, greater sympathy, less anger, less judgement of responsibility and greater willingness to help was associated with the label Alzheimer’s disease than that of major depression (Wadley and Haley, 2001). Although healthcare professionals may have concerns about labelling people as having dementia (i.e. disclosing a diagnosis of dementia), the consequences are not always negative. The diagnosis may also help the person to understand changes they are experiencing, plan for the future and obtain support and treatment. It is a biomedical ethical, and in most cases a legal, obligation to pursue a proper diagnosis of dementia and to give people the opportunity to be informed of the diagnosis.
Diagnosis and participation in research
The desire to avoid being labelled as a person with dementia may delay diagnosis and lead to people not accessing timely treatment and support, which may also have a negative impact on carers. Ben-Zeev, Young and Corrigan (2010, p. 320) describe such label avoidance and associated denial of group status as “perhaps one of the most significant ways in which stigma impedes care seeking.” Failure to seek a diagnosis in the light of dementia-related symptoms also contributes to the number of undiagnosed cases of dementia which affects the number of people who could take part in dementia research. Garand et al. (2009) point out that research which draws on participants from an Alzheimer’s disease Research Centre is not likely to be representative as the sampling would exclude people who are fearful of a diagnosis of MCI or dementia. The fear is not necessarily of acquiring the label but of everything that the label sums up in people’s mind. In the context of research, this means many people with dementia will not contribute towards society and towards future developments in dementia care and treatment.
Dignity and respect
It seems unethical, in terms of respecting a person’s human dignity, to offend the very group of people for whom treatment, care and research are intended, knowingly, through the use of the term “demented”. It is a linguistic choice. Alzheimer Europe explicitly asks speakers to avoid the use of certain terms and suggests alternatives. The aim is not to police language but to inform speakers about the possible impact of certain terms on those concerned. People are then free to use the terms they choose and some do use the term “demented”. This is mainly an issue linked to the English language but the problem extends beyond Anglophone countries as English is frequently the official language used at large conferences and in numerous English-language, peer-reviewed scientific journals.
The English language is a living, dynamic language. New terms are constantly being defined and added to dictionaries, some are labelled “archaic” and some are labelled “offensive”. The following example is taken from the online Dorland’s Medical Dictionary for Health Consumers (2007):
mongolism /mon·go·lism/ (mong´go-lizm) former (now offensive) name for Down syndrome
However, this is not yet common for the term “demented”. This term is often followed by definitions such as “mentally ill/insane”, “suffering from dementia” or “pertaining to a form of mental disorder in which cognitive functions are affected” (The Free Dictionary, Farlex inc., 2013). As perceptions of dementia change along with their associated meanings, certain terms such as “demented” may also eventually become obsolete.
The French and Dutch terms mentioned earlier (dément, Alzheimérien and dementerende) are different from the English term “demented” as they are not used as adjectives describing attributes that a person has but as nouns describing what a person “is”. This is similar to the practice of calling people with schizophrenia “schizophrenics” in that it reduces a person to a disease state. Ngatcha-Ribert (2004) suggests that a person who is thus designated is then treated like an object which is moved about and manipulated.
The appropriate use of medical terms, on the other hand, is sometimes considered as providing legitimization and greater respect for people with dementia. It may result in them being considered as having a recognised medical condition for which they are entitled to treatment, care and support, as opposed to what was previously rather vaguely considered as senility and kept hidden within the family, as the following quote demonstrates.
“We no longer hide granny who has gone gaga, but we have our grandmother who has Alzheimer’s disease, and there we find credibility in a new discipline and in a disease for which there are researchers who say but of course, Madame, it’s not because you’re losing your mind, you have neurofibrillary neurodegeneration….” (Geriatrician cited in Ngatcha-Ribert, 2004, p.54 – our translation).
About the use of metaphor
Metaphors are used in all aspects of communication (e.g. in conversations, books, newspaper articles, artwork, political speeches and films). Zeilig (2013, p. 2) defines metaphors as “set[s] of linguistic processes whereby aspects of one object are carried over or transferred to another object”. She further explains that the metaphor involves an implicit comparison between two dissimilar things (often difficult concepts), with the unfamiliar/difficult thing being described by the familiar thing without the need to state “as” or “like”. This renders concepts and experiences which are hard to grasp or address more tangible. It also has implications for the way we think and perceive the world as the meaning of the metaphor is carried over to that to which it is linked (Zeilig, 2013).
Lakoff (1991) suggests that “metaphorical thought, in itself, is neither good nor bad; it is simply commonplace and inescapable. Abstractions and enormously complex situations are routinely understood via metaphor. Indeed, there is an extensive, and mostly unconscious, system of metaphor that we use automatically and unreflectively to understand complexities and abstractions.” Unfortunately, it is not always possible to determine whether its use is simply a reflection of the society in which a person lives and has constructed meaning, or a deliberate and selective attempt to draw on certain meanings and associations with which the person is familiar, and presumably other people too, for various reasons. Sometimes metaphors are used so often that they lose their significance with the result that the use of clear terms would be much more powerful. Reflecting on her earlier work “Illness as Metaphor” (and on what she meant by “metaphor”), in which she criticised the use of fighting terminology, Sontag (1990) suggested that metaphors can be unhelpful or harmful.
“Of course one cannot think without metaphors. But that doesn’t mean there aren’t some metaphors we might well abstain from or try to retire from”.(Sontag, 1990, p.93)
Dementia or Alzheimer’s disease as metaphors
Gzil (2014) describes AD as an emblematic illness; the mythical illness of the contemporary world. Far from suggesting that AD is not a disease but a social construction or a myth constructed by pharmaceutical companies, doctors and associations, he suggests that AD has acquired a symbolic power and has become “a figure, an emblem, a metaphor, a myth in the anthropological sense of the term” (Gzil, 2014, p.9). This perspective is in keeping with Susan Sontag’s famous work “Illness as a metaphor” (1978) in which she suggested that people project their feelings about evil on to certain diseases (such as the plague, leprosy, syphilis, cholera, tuberculosis and more recently cancer and AIDS) and that those diseases (which are then enriched with those meanings) are then projected onto the world. Descriptions of dementia as evil and wicked are not uncommon (Connolly, 2013). The disease itself becomes a metaphor and everything that the disease sums up in people’s minds is linked to other things. Zeilig (2013, p.5) proposes what she describes as a simplistic equation for dementia as a metaphor, namely: “Dementia = a complex, unknowable world of doom, ageing, and a fate worse than death”. Gzil (2014) links the mythical status of AD and the threat that AD symbolises to the metaphor of the zombie (see subsequent section) and to existential anxieties whereby the fear is not of a violent death but of a long, drawn-out life, a life which is no longer considered a life, or at least not a life worth living.
In drawing attention to the use of certain metaphors for cancer, as well as tuberculosis and later AIDS, Sontag’s publication led to greater awareness of metaphors and reflection on the possible impact of their use. Speaking from her own experience of having cancer, Sontag (1990) urged people “to regard cancer as if it were just a disease – a very serious one but just a disease” (Sontag, 1990, p.103). In the following sub-sections, we highlight some of the metaphors surrounding dementia and at the end consider the possible implications of using metaphors to portray dementia and people with dementia in this way.
The brain and the head
Numerous metaphors for dementia are used which focus on the brain or the head. Examples of metaphors used in the United Kingdom, Belgium and the Czech Republic include the brain being “scrambled”, “transformed into Gruyère cheese “not working well”, the head being full of “snow” or “fog” and “having a short circuit” or “wind” in the head (Gove, 2012; Janakova, 2013; Van Gorp and Vercruysse, 2011).
Flooding/uncontrollable natural disasters
Zeilig (2013) describes how dementia has long been associated with the danger of flooding (e.g. the rising tide of dementia, the silent tsunami, the wave of dementia). This could be interpreted as the threat of a natural disaster, something uncontrollable or unstoppable and even in biblical terms as a threat to the survival of humanity. Diseases, such as ovarian cancer, which often do not have noticeable symptoms until they are fairly advanced are frequently referred to as silent killers (Cornforth, 2009). Whilst this is not the case with dementia, for which there are often noticeable signs, the flooding imagery may symbolise “an unstoppable force of nature coupled with quiet stealth (Zeilig, 2013, p. 3). When natural catastrophes occur, their indiscriminate nature is often emphasised. Everyone is at risk.
Dementia as an epidemic
AD has been described as a “silent epidemic” (Gubrium, 1986, p.34). The metaphor of an epidemic implies something that spreads rapidly and extensively through infection but the term can also be used figuratively as simply meaning something that is widely prevalent. According to Ngatcha-Ribert (2004), this perception is often fuelled by media reports which suggest a soaring epidemic looming up on horizon which will affect everyone directly or indirectly. This may be reinforced by astronomical figures linked to the estimated cost of future care (Sontag, 1978).
Wars, fighting and crusades
Military metaphors became increasingly common in the field of medicine in the 1880s following the identification of bacteria as agents of disease (Sontag, 1978) and again after the Second World War, when military metaphors were promoted in cancer care (Lane et al., 2013). This has typically involved the portrayal of “combatting” diseases such as cancer, and the use of fighting terms such as wars, battles and crusades. The metaphor of war also applies to dementia and has been used by the general public, people with dementia, doctors, researchers, Alzheimer associations, the press and politicians alike as the following examples demonstrate.
The UK Prime Minister David Cameron stated, "We've got to treat this like the national crisis it is. We need an all-out fightback against this disease, one that cuts across society.” (Weston, 2012) and the slogan on the website of the Department of Health dedicated to addressing dementia is “the dementia challenge: fighting back against dementia” (http://dementiachallenge.dh.gov.uk/ - accessed in July 2013).
A press release from the US Department of Health and Human Services presenting the US national dementia plan stated, “Obama administration presents national plan to fight Alzheimer’s disease” (http://www.hhs.gov/news/press/2012pres/05/20120515a.html - accessed in July 2013).
The current slogan of a UK-based Alzheimer’s Society is “leading the fight against dementia (https://www.alzheimers.org.uk/ - accessed in July 2013).
“Well then you decide, well OK, we’ll fight it as long as we can." (Iain, cited in Clare, 2002).
The above citations provide examples of the way that dementia is personified as an attacker and people with dementia, the government and Alzheimer Associations as being ready to fight or fight back against the attacker. The frame of the invader, identified by van Gorp and Vercruysse (2011), might also suggest “taking over” and exercising power over those who have been invaded. Whilst wars bring suffering and fear, they may also be perceived as energising and uniting people against a common enemy. The calls from governments for action and from Alzheimer associations to lead the fight suggest that people with dementia are not fighting alone. This suggests solidarity and the perception of people with dementia as “one of us”.
The language of warfare may encourage people to view people with dementia “as “victims” who are ravaged by a singular marauding disease” and it personifies AD “as a “mind- robber” that “attacks” or “strikes” the brains of individuals leaving plaques and tangles in its wake” (George, 2010, p. 586). Statements about fighting could be interpreted in a positive sense as taking action whereas fighting back might be interpreted as being slightly more defensive which, when considered in connection with other metaphors which depict dementia as catastrophic and uncontrollable, might be perceived as a weak position to be in.
The term “victim” has been used not only in relation to people having dementia and in relation to war terminology but also to the poor quality treatment and even abuse sometimes experienced by people with dementia within the healthcare system. At the same time, Ngatcha-Ribert (2004) highlights the way that informal carers are often portrayed as the “real” victims of dementia, the implication perhaps being that people with dementia are also victimizers (unless it is dementia as a personification which is perceived as the victimizer).
Zombies and monsters
The metaphor of the zombie is slightly different to other metaphors in that it is not linked to a single characteristic and may be used without necessarily making explicit reference to zombies (Behuniak, 2011). Rather it is based on the portrayal of people with dementia as sharing certain characteristics with zombies (as portrayed in literature and films). Behuniak carried out an analysis of references to such characteristics in relation to people with dementia in English-language medical journals and based on the portrayal of zombies as dispossessed entities in three films by Romero (dated 1968, 1978 and 1985). The three zombie-like characteristics, described by Behuniak as having been used to depict people with AD, are appearance, loss of self and loss of the ability to recognise others. Three additional characteristics are linked to the disease itself, namely the epidemic threat, widespread cultural terror and death as being preferable to becoming an animated corpse. The metaphor of the zombie has been described as reflecting the perception “at the collective level of a scourge which infiltrates and invades society” (Gzil, 2014, p. 9).
The metaphor of the zombie (a dead body which has been given the semblance of life due to possession by a supernatural power) (Behuniak, 2011) is also relevant to understandings of a mind-body split. According to Aquilina and Hughes (2006), zombies are “treated as already dead and as walking corpses to be both pitied and feared, despite their obvious signs of life” (p.143), which creates a further link to the concept of a “social death”. These two issues are discussed in the section on “The person with dementia”.
Emptiness/absence of the “real person”
Metaphors are often used which reflect a perception of people with dementia being physically present but mentally absent or disconnected from the world around them. Terms and images reported include “off/away with the fairies”, lights on, no-one home”, an “empty shell””, “not being there”, “sitting there like vegetables”, the person just being “a body”, “vegetables in a parallel world” and a “speechless shadow” (Devlin et al., 2007; Dunham and Cannon, 2008; Gove, 2012, Piehl, 2009, Swane, 1996). This reflects dualism as the implication is that the person’s body is there but their mind is not (see sub-section on dualism). It is as though the physical body is just a container of the mind. The “real person” is believed to be found in the mind.
In 2004, Christine Bryden, who has dementia, spoke out at a dementia conference about the unacceptability of using terms such as “mindless empty shell” in connection with people with dementia. Many references to this term now reflect attempts to demonstrate its inappropriateness to describe the experience or state of people with dementia (i.e. calls not to refer to or consider people with dementia in this way). Nevertheless, some carers still use the metaphor in accounts which illustrate their understanding of dementia. An example is the poem “Cecilia’s Long Goodbye” which includes the phrases “to be reduced to a mere shell like this is more than just a shame” and “for though your body is here, it is just an empty shell” (Podlesak, 2013). In contrast Anderson (2012) develops the shell metaphor further and emphases that it is not empty. He states:
“During my work with families I have heard many people use the phrase, “empty shell of a person” when describing a loved one ravaged by the later stages of the dementia. …/… those living with dementia are far from “empty shells.” Yes, the shell may become more and more difficult to open. Some days it might not open at all. But never forget that there is a beautiful, unvarnished pearl within. Understanding how to “open the shell” gives us opportunities to meaningfully connect with our dementia-afflicted loved one—even if only for a fleeting moment. Just as the right tools and a lot of technique is required to shuck an oyster, there is technique and artistry involved with communicating or connecting emotionally with a loved one who has dementia.”
The ghostly/disappearing person
People with dementia are sometimes portrayed as fading away or becoming progressively invisible. This was the theme of a television advert to raise awareness of dementia which was funded by the National Health Service in England (see: https://www.youtube.com/watch?v=TLpVqc0w_Ao). The message of the advert, according to Burstow (2011), was that whilst it was difficult for the daughter in the advert to discuss the issue with her father, acting on her concerns and getting help meant she could “keep the dad she knows for longer”. The producers may have been drawing on their understanding of common perceptions of dementia in an attempt to convey a positive message about the benefits of timely diagnosis. However, the image of the fading person who progressively “returns” is reminiscent of ghosts, which may create a symbolic link to death. The image sums up a distant, unreachable presence which is a contrast to metaphors of a bodily presence and absent mind.
Dementia as a journey
The metaphor of the journey has been used to describe the experience of living with dementia as opposed to fighting it. Three people with dementia from Scotland produced a booklet targeted at people who had been newly diagnosed with dementia. Its title was “Don’t make the journey alone: a message from fellow travellers”. At the end of the brochure the authors state,
“We are travelling from an old life to a new. If you can think in a positive way and get the help and support you need, the journey can be brighter and less frightening. Remember you do not travel alone.” (Pat, James and Ian, undated)
Writing in the context of cancer, Ruff (2013) suggests,
“On a journey, we can appreciate the beauty we encounter and have deep conversations with those who travel alongside us (instead of the chaos and conflict that characterize a battlefield, strewn as it so often is, with the destruction and detritus of war).”
Related ethical issues
Helpful or harmful?
Metaphors can be helpful. They may enable people to understand a complex medical condition for which there is no cure, for which the causes are multiple and not clearly defined and for which the individual prognosis is not known. Louis Pasteur used invasion imagery to explain his new discovery to the public in 1864 but according to Wiggins (2012), the subconscious impact that allegories such as this have on people is not fully understood and with regard to military metaphors, it is time for a new imagery, which does not place people under pressure to be positive and proactive.
In the context of warfare metaphors, dementia can be perceived as something that can be fought against, thus giving people a feeling that they are actively doing something. Fighting back may also symbolise the refusal of victim status. Nevertheless, in case of defeat or the loss of a “personal battle”, there is little room in the warfare metaphor for a positive feeling and self-image as the world around continues to battle on. People may be left with the feeling that they did not battle hard enough, long enough or wisely enough and the idea that some battles cannot be won despite everyone’s best effort is rarely put forward (Ruff, 2013). Terry Pratchett, a well-known British writer with dementia, stated, “You can’t battle it, you can’t be a plucky ‘survivor’” (Alzheimer’s Society, 2008, p.x).
The warlike terminology personifies dementia as the enemy with whom we must fight. But how do we actually win? If dementia really were a person, in a war situation this would imply killing him or her or at least ensuring that s/he is no longer a threat. In disease terms, this might involve preventing or curing the disease. George (2010) suggests that the warfare metaphor is not helpful in that prevention, halting, reversing, fighting, arresting and curing are not currently realistic, attainable goals for the near future. He proposes shifting the focus from cure to the concept of postponement. He adds that as everyone undergoes neuropathological changes, this focus would foster empathy and nurture the capacity to feel interdependence and solidarity for those who are more profoundly affected by such changes. One could also ask if it would not be better to avoid the use of metaphors altogether, at least in official or public messages about dementia, and to focus more on educating people in a way that is scientifically accurate and at a level which the general public of today is likely to understand.
The use of metaphor may affect the way that people relate to others who have dementia and may result in negative stereotyping, i.e. additional characteristics being attributed to people with dementia. This may lead to an inaccurate understanding of dementia and negative attitudes towards people with dementia. Stereotypes and images based on metaphors may be fairly powerful and prevent people from recognising the individuality of each person with dementia. Care ethics emphasises the importance of relationships and the person’s history and uniqueness as a person. Perceiving people with dementia as objects or in some way absent is therefore likely to have a negative impact on the provision of care. The misunderstandings and attitudes resulting from perceiving people with dementia in that way may affect the way that people with dementia are valued, the relationships people have with them and the care and support they are given.
Coping with perceived threat
Through the use of metaphor, the disease can be given an identity (e.g. of a flood, a monster, an attacker etc.) which can be visualised and emotions projected onto it. It can be blamed, hated and avoided. Natural disasters might, on the surface, merely symbolise something that is threatening (like dementia) and which necessitates concerted action on a large scale to protect citizens from it. However, such disasters may be less threatening than dementia (for those who have no personal experience of them) due to the fact that they are exterior and relatively rare. The fear of something that cannot be seen or fully understood can be transposed onto something exterior which is more familiar, less threatening and can be seen and practically avoided.
Personhood and social exclusion
The inhuman, monster-like portrayal of people with dementia, as well as the ghostly disappearing self, seem to challenge the notion of individuality, human dignity and personhood in that the changed behaviour and appearance of the person are emphasised at the expense of their personality, character, individuality and identity. Some people may find such metaphors helpful as a means to avoid blaming the person with dementia. Perceiving them as something different may serve to lessen their perceived responsibility for behaving in a certain way and enable carers to retain a positive image of them. However, it is unlikely that this would be helpful to people with dementia in terms of their being treated with consideration and respect.
Portraying people with dementia as monsters or zombies positions them as an out-group (i.e.theyare monsters and zombies,weare not), may contribute towards their stigmatization and, in keeping with the function of metaphors, create an association to characteristics of the specific metaphor which in this case might be fear, horror, loathing and disgust. Such metaphors might also be interpreted as symbolising a radical and irremediable change or loss of the person they used to be. Green (2009) describes the threat of the “other” in relation to long-term conditions:
“However, people who carry a stigma are the embodiment of the ambivalent, dangerous “other”. People with a long-term condition may be treated as such, seen as polluting and contaminating, and dealt with by using exclusionary tactics to locate them both physically and symbolically as far away as possible from the self.”(Green, 2009, p.21)
This fits in with the theory of the belief in a just world in which perceived similarity with members of the out-group can be threatening (Lerner, 1980). This is one example where a counter-frame, in this case an alternative metaphor, might be helpful. Van Gorp et al. (2012) proposed the metaphor of “the strange companion”, a more positive personification which symbolises a second person rather than the tragic transformation of the person him/herself into something to be pitied or feared.
In everyday life, the way that dementia is perceived and portrayed is influenced by a range of factors including interaction with other people, personal experience and the media. Often, people are unaware of why they perceive and portray dementia as they do. However, particular ways of perceiving and portraying dementia can also be communicated in a strategic way. In other words, organisations and individuals may sometimes have reasons to transmit or convey a certain perception or understanding of dementia (e.g. linked to its causes, how it is experienced or its impact on individuals and wider society). This may, in turn, be linked to beliefs about how to address dementia as a public health issue, the place of people with dementia in society or methods to tackle dementia-related stigma.
The strategic communication of dementia may be overt or covert. Sometimes there may be a hidden agenda but sometimes the reasons for the choice of terms, analogies and images may be openly stated, either in the communication itself or elsewhere. In some contexts, the way that information about dementia is communicated reflects the official discourse of governments or other official/professional bodies but does not necessarily reflect the perceptions of the individuals employed in those organisations.
At the interpersonal level, people may try to portray dementia in a certain way in order to achieve a particular goal. In the past, much communication about dementia was made by healthcare professionals and informal carers. People with dementia are now increasingly challenging current perceptions of dementia, by speaking publicly at dementia conferences and through publications, reaching a wide audience including the general public, healthcare professionals, researchers and policy makers. Such communication can perhaps be considered as strategic in the sense that people with dementia are openly challenging some of the ways in which they are currently perceived and portrayed.
The phrase which originated from the disability movement “nothing about us without us” is often cited and the necessity to involve people with dementia more actively in the dementia movement as well as in the development of national and European policy is increasingly being recognised. This involves more than representing or being open to the views of people with dementia but also ensuring that their views are heard, and that they are provided with opportunities and, when necessary, support to make their voices heard and to speak about issues that are important to them. In 2012, building on the experience of Alzheimer Scotland at national level, Alzheimer Europe established a European working group of people with dementia to inform its own policies, with the chair of the group having a place on the board. The involvement of people with dementia in conferences, working groups and the Alzheimer Europe board is in keeping with Alzheimer Europe’s 2011 to 2015 Strategic Plan to make dementia a European priority.
In addition to transmitting key messages, strategic communication is also about the specific choice of words. Many healthcare professionals are aware of the impact of language but they do not all agree on how it can contribute towards minimising harm and/or bringing about positive change. As mentioned earlier, some avoid the use of certain terms and use euphemisms (Phillips et al., 2012). Others deliberately use terms such as dementia and Alzheimer’s disease, albeit in a sensitive manner, as a means to overcome perceived stigma, sometimes basing this approach on perceived changes in attitudes towards cancer over the last 20 years (Gove, 2012).
At a wider level, Ballenger (2006) provides an in-depth analysis of the way in which Alzheimer’s disease came to be accepted in America as “a viable project for modern biomedical research” (p.101) and as a major public health issue. He describes how some scientists openly stated their objective “to persuade people that Alzheimer’s disease is a disease and not simply what used to be called “senility” or “senile dementia”. He also describes how Butler highlighted the perceived importance of naming a particular disease, which is meaningful to people, rather than focusing on the need for basic science as a means to obtain funding for research into Alzheimer’s disease. Butler called this approach “the health politics of anguish” (cited in Ballenger, 2006, p. 118).
Strategic communication is sometimes reflected in changes in the terms used to refer to dementia or Alzheimer’s disease. Examples can be found in relation to professional medical authorities, governments and Alzheimer associations. For example, according to Kennedy (2010), the latest changes in the classification of various forms of dementia in the Diagnostic and Statistics Manual (V) of the American Psychiatric Association, were in part to avoid “the stigma associated with dementia when categorising deficits among younger people with progressive cognitive decline associated with HIV or traumatic brain injury.” Such concerns seem to reflect a belief that dementia is stigmatizing because it is perceived as being a condition of older people and not that it is a label which is perceived as discrediting to all people with dementia.
In Japan, the term for dementia was officially changed in 2004 from a term signifying a “disease of cognition associated with idiocy” to one signifying a “cognitive syndrome”. This strategy was accompanied by an educational initiative and awareness-raising events which, it is claimed, resulted in the term been widely accepted. Whilst a new term is unlikely to change the underlying perceptions of the disease or condition which it designates, Miyamoto et al. (2008) suggest that there had been a growing awareness in Japan, based on people with dementia speaking out about their experience, and that the old term did “not accurately depict the reality of the condition” as they had come to understand it. This highlights the importance of hearing the voices of people with dementia. It also highlights the complexity of strategic communication in that it not only seeks to achieve certain goals but may also be the result of changes in the way that dementia is perceived.
In Finland, the Finnish Association, which represents people with memory disorders and their carers, changed its name from one which included the term “Alzheimer” to “Muisti” which means “memory” and in so doing established a broader focus, covering memory-related disorders. However, this focus on memory disorders was only partly in response to concerns about stigma as it was partly influenced by the development of terminology which accompanied the development of memory clinics. Again, whilst strategic, it was influenced by changes within society in Finland and was in keeping with the joint objective to create a “memory-friendly Finland” on the basis of four pillars:
- “to promote brain health,
- to foster a more open attitude towards brain health, treatment of dementia and rehabilitation,
- to ensure a good quality of life for people with memory disorders and their families through timely support, treatment, rehabilitation and services,
- to increase research and education.”
Finally, the terms “carer”, “caregiver” and “informal carer” are used in English-speaking countries and in the international literature on dementia to denote people who provide care on an unpaid basis to a person with dementia. Usually, carers (or caregivers, informal carers etc.) are relatives, partners or close friends. Some do not view themselves as carers or feel that they provide care. Some feel that they provide more care than they would like to provide, have no training, are not formally recognised and were more or less forced into the role of carer (Alzheimer Europe, 2001). It has been suggested that the term carer promotes unskilled and cheap forms of care for people with dementia (Cheston and Bender, 1999). The emphasis on the term “carer” implies that most people with dementia are already cared for (i.e. they must be as they have a carer). A whole range of services and support, which the person with dementia needs, can be considered as being provided and at little or no cost to the state. It is therefore possible that the term carer is sometimes used strategically to position the relatives and close friends of people with dementia in a way which reflects and may even serve to justify the official discourse of the state with regard to healthcare provision. On the other hand, the term might also sometimes be chosen in recognition of the fact that not all relatives are carers and vice versa.
Related ethical issues
Judging the motives and morality of strategic communications
We define “strategic communication” as ways of communicating about dementia which result from a strategy or are intended to accomplish a specific goal. Strategic communication about dementia could perhaps be described as good or bad, depending on what the specific goal is. However, it is likely that some forms of strategic communication might be considered as more defendable than others and that some might be considered as “misguided”.
With reference to the biomedical model of dementia, Ballenger warns against the assumption that a particular portrayal of dementia should be rejected or criticised solely on the grounds that it is ideologically driven. He suggests, on the contrary, the importance of considering the moral and practical implications in the concrete situations in which it is deployed, including the political and policy ramifications resulting from research or a focus on a particular explanatory model of dementia. In this sense, one might say that the end result, in terms of implications, particularly for people who have or will develop dementia, is one of the most important factors in trying to determine whether a strategic communication is ethical.
The efficacy of strategic communication
Strategic communication is complex and it is sometimes difficult to say with certainty whether a goal has been achieved (which may or may not be ethical). It cannot be determined with any degree of certainty, how a particular message or portrayal will be received and interpreted by the targeted audience. Sometimes, a particular well-chosen reference to a dementia-related issue may contain a second message through the choice of metaphor or terms used. For example, Terry Pratchett stated,
“What is needed is will and determination. The first step is to talk openly about dementia because it's a fact, well enshrined in folklore, that if we are to kill the demon then first we have to say its name”.(Alzheimer’s Society, 2008)
The message seems clear and the author clearly described the link to folklore. However, the symbolism of the demon may be counter-productive in that it reinforces the fighting metaphor and may contribute towards the identification of people with dementia as “other” and to fear, based on the common belief that a person can be possessed by a demon. Strategic communication may sometimes backfire or have unexpected results, which are not in the interests of people with dementia, particularly if it becomes distanced from its original context.
In some countries, awareness-raising campaigns about dementia and organisations (such as the Finnish Alzheimer Association) which focus on memory-related problems may have been helpful in raising awareness about the difference between natural ageing and AD. However, people experiencing different kinds of symptoms (e.g. mood changes, confusion and paranoid delusions) might not recognise a possible link to dementia and even if diagnosed, might not feel that services and support for people with a memory-related disorder are appropriate for them.
An issue for which there are differences of opinion as to what would be beneficial is that regarding official changes to the term “dementia”. As dementia is the recognised term for a medical condition, a change of term would just be a new word for the same condition which retains the same meaning. The terms used to denote other conditions such as schizophrenia and leprosy have been changed in some countries and there have been studies which have explored the impact of using more politically correct labels for schizophrenia. There is little evidence of this having had a significant impact on the way that those conditions or the people with those conditions are perceived and in some cases may even have a negative impact (Chung and Chan, 2004; Penn and Nowlin-Drummond, 2001). It may take more than a new word to change public perceptions of diseases such as schizophrenia, leprosy and dementia as they are deeply rooted concepts which are not defined merely by the labels attributed to them. Ballenger (2010) further links the negative impact of the term “dementia” to normative standards of productivity and competence, which drive the stigmatization of ageing and cognitive impairments. He concludes that changes in terminology are merely euphemistic and that euphemisms “allow us to ignore unpleasant realities and shirk difficult social and cultural work”.
“Positioning” people with dementia in relation to other people and society
The strategic use of certain terms, perhaps over a length of time and by experts and official or professional bodies, may, depending on the context, be perceived by the general public as the correct terminology or as reflecting an undeniable “truth” or “fact”. If people with dementia are portrayed in a positive light, the impact may be beneficial but when this is not the case, it may be difficult for them to free themselves from the connotations and meanings associated with various terms or portrayals. They may be placed in a symbolic position in relation to others and society (e.g. as a patient rather than a person, as a recipient of care rather than a partner and as a burden rather than a tax payer who contributes towards the care of other members of society) from which it is difficult to extract themselves. This may also be the case for carers. Cheston and Bender, describe the consequences for relatives and friends of being defined as carers:
“Being reduced to the role of carer removes at a stroke their relationship with their spouse or parent and its years of history; and, having stripped away all the spoken and unspoken “theres and thens”, allows only the “here and now” of organic brain damage to be considered.”(Cheston and Bender, 1999, p.94)
They also describe the situation whereby some people do not fit into the positions and roles to which they have been ascribed and insist on “acting as if they were still important people, people of value and worth who should be respected even if they did have some memory problems” (Cheston and Bender, 1999, p. 176). This calls for reflection on what we are implying, taking for granted and accepting when we use such terms.
 See also “the use of frames in the media” in the section on “The portrayal of dementia in the media”.
Having looked at how people understand dementia in terms of its cause or origin, how they talk about dementia and people with dementia and what this suggests about their attitudes, expectations and feelings about it, we now explore different ways in which the existence and experience of dementia are perceived and portrayed.
In the first part, we will look at perceptions that deny people with dementia a particular status:
- dualism – the “mind-body split” and
- dementia as a “social death”.
The second part regards perceptions that focus on fundamental changes within the person:
- becoming a different person/a stranger,
- loss of self.
Personhood is defined in the Oxford English Dictionary as “the quality or condition of being an individual person” and defines a person as “a human being regarded as an individual”. Taken together, these definitions imply two criteria for personhood: 1. to be a human being, 2. to be regarded as such by other people.
The criteria for human status
For some people, the human quality is linked to spiritual beliefs about people having a spirit, a soul or a kind of unique inner essence, which in some religions is believed to continue beyond human life. A distinction can also be made between qualities that are possessed and may be lost (so the person is incomplete) or qualities which are constantly being constructed. In other words, personhood could be viewed as a kind of inner essence, which in the course of the disease is eroded and finally lost, or on the contrary, as something which is constantly being constructed within a social context (Swane, 1996). This essence of what makes a person human has also been described in terms of the “true self”, the “living spirit” and “essential humanness” (terms cited in Ballenger, 2006).
According to Buron (2008), there is little disagreement that people with dementia are entitled to personhood status at the human biological level. However, Dan Brock (1993) argues that people with severe dementia, whilst members of the human species are worse off than animals in some respects in that they have no capacity for integrated and goal-directed behaviour and that due to memory loss cannot forge links across time that establish a sense of personal identity across time. He concludes that they lack personhood (Baldwin and Capstick, 2007). The importance of having an awareness of oneself in the past (Buchanan, 1988) or of some memory of psychological continuity over time (Parfit, 1984) has been suggested. Buchanan (1988) claims that when people reach a stage where they have not only lost all connection to their former self but also any kind of continuity with people in general, they are non-persons. Similarly, Kuhse (1999) considered personhood as being dependent on having a perception of existing over time and having a vision of one’s life as extending into the future, as well as possessing certain capacities. By contrast, others have focused on demonstrating that even those with advanced dementia who are unable to care for themselves or communicate easily have a certain level of awareness (Clare et al., 2008). Sabat (2002), using the tri-partite model of self, argues that people with dementia continue to have a sense of self as illustrated by their use of the indexical ‘I’.
There is a tendency to concentrate on instrumental reasoning capacity and accurate memory rather than the more social, expressive, imaginative and even unconscious dimensions of being human (Crisp, 1999).Kant, for example, emphasised the necessity of possessing rationality (the ability to think and reason logically) and being able to communicate this to other people to qualify as a person. The term “hypercognitive” if often used to describe this bias in the importance attributed to cognitive faculties in defining personhood (Post, 1995). Crisp does not deny the loss of cognitive faculties but rather emphasises the importance of how people view being human and the self. In some of the portrayals of famous people who had dementia, it is the loss of their intellectual capacity resulting from dementia which is often portrayed as most tragic, as if their other human qualities were of less importance. One tabloid newspaper wrote an obituary about Iris Murdoch with the following headline and caption:
“Brilliance dimmed by disease: Philosopher and novelist who fell from flights of genius to watching the Teletubbies.”(Sharp, 1999, cited in Kirkman, 2006)
Being considered a human being by others
Kitwood stated, “In an ethical sense, personhood is attributed even to the new-born infant. In an empirical sense, personhood emerges in a social context” (Kitwood, 1992, p.275). He described personhood as “a standing or status that is bestowed on one human being by another in the context of relationship” (1997, p.8). Kitwood challenged the capacity-based view of personhood and the bio-medical approach to dementia and suggested that people with dementia retain a personal awareness of their individual uniqueness of being until death.
Although people with dementia, like everyone else, have an individual uniqueness, this may at times be overlooked in that the overriding emphasis is placed on the fact that they have dementia. One person who has dementia described the mere diagnosis of dementia as like being certified as a non-person (Thompsell, 2008 in Nuffield Council on Bioethics, 2009). Price (2008) describes how once diagnosed with dementia, “the diagnosis and its presumed personal and public consequences somehow become a person’s chief defining characteristics” (2008, p.1341). This, she attributes partly to the emphasis on the medical model of dementia. This observation was made in the context of a discussion about the invisibility of gay men and lesbians with dementia and how they have been conspicuously absent from dementia research, policy and practice, but it could equally apply to all people with dementia. The overriding focus on dementia can be likened to the concept of identity engulfment described by Jones et al. (1984).
Aside from philosophical and ethical arguments about the criteria for being considered a person, the use of metaphors by lay people for people with dementia provides additional insight into how people with dementia are sometimes perceived as non-human (please see section on metaphors for more details). In the qualitative study by Corner and Bond, one person commented that all that could be done for people with advanced dementia was to provide basic care and ensure that they were “well fed, and watered, and clean” (2004, p.151), which has connotations of caring for an animal or plant. In another study, a person with dementia was described as someone who was sitting there like a vegetable (Devlin et al., 2007). From the perspective of a person with dementia in a psycho-geriatric unit, the behaviour of staff in serving food was likened to tossing food to a dog (Edvardsson and Nordvall, 2008). The perceived absence of personhood is even more explicit in the following quotes:
“But you have to remember that body is not who the person is. The person is gone.”
“There’s no point in asking her...she’s not there, as far as that part of her.”
“I wasn’t dealing with a human. Isn’t that a terrible thing to say? I wasn’t dealing with a human being.”(Dunham and Cannon, 2008, p.49)
“He possesses neither sensitivity nor affect, neither language nor thought. He has lost all humanity. He is no more than a body.”(cited in Ngatcha-Ribert, 2004, p. 57 – our translation)
Dualism – the “mind-body split”
The metaphors mentioned earlier which reflect a perception of people with dementia being absent or empty reflect dualism as the implication is that the person’s body is there but their mind is not. It is as though the physical body is just a container of the mind. The “real person” is believed to be found in the mind. This was also discussed in the section on personhood.
Dualism is the term which reflects the idea that there are two fundamental categories of things or principles (Robinson, 2012). When applied to the philosophy of the mind, it typically involves a perception of the body and the mind as two separate entities with one represented by something physical such as the brain and the other being detached from chemical or physiological processes, having a source and essence of its own (Hinshaw, 2007). In line with this philosophy, people could perhaps be described as encompassing a container (such as the physical body, including the physical brain) as well as a separate, non-physical mind, spirit or soul (AllAboutPhilosophy, 2013). Dualism can be traced back to the ancient Greek philosophers but the current, everyday use of this term tends to mainly reflect the work of René Descartes. He associated the mind with consciousness and self-awareness rather than intelligence which was associated with the brain (Wozniak, 1995). However, it is not clear how lay people interpret the term “the mind” and whether their use of the term always reflects this mind-body dualism. Dictionary definitions of mind include entries which refer to the brain
“The human consciousness that originates in the brain and is manifested especially in thought, perception, emotion, will, memory, and imagination.”(The American Heritage [online] Dictionary of the English Language)
Moreover, the terms “mind” and “soul” are sometimes used interchangeably. They were both used by the ancient Greek philosophers and Descartes but the term “soul” may be linked nowadays to a more theological understanding of a non-physical matter than the term “mind”.
It is not always clear when people use the term “mind” whether they are referring to the workings of the physical brain or that which is non-material. Nevertheless, most references to the loss or absence of a mind in relation to people with dementia do seem to suggest mind-body dualism.
In their work which identified frames and counter-frames for dementia, Van Gorp and Vercruysse (2011) identified mind-body dualism as the most common conceptualization of dementia. These frames were derived from an analysis of numerous portrayals of dementia in the media. They proposed a counter-frame of unity of body and mind which involves putting the mind and body on an equal footing.
Merleau-Ponty developed a concept, based on Heidegger’s notion of Dasein (being-there), which is now often referred to as the body-subject. This implies that every human has a body (being a physical creature) and is capable of thought, reflection and communication but these two parts are not separate as in Descartes’ body/mind dualism but rather a unified form which experiences the world and expresses itself in a bodily form (Matthews, 2006). When a person sees, s/he is dependent on the eyes but there is an “I” behind the eye. As dementia progresses, the person can no longer rely on the unified form. Consciousness is expressed through bodily activity but the body, as a vehicle for expression, is breaking down (Matthews, 2006). This does not mean that there is no consciousness. At a more psychological than philosophical level, Jenkins and Price (1996) draw attention to the way that people tend to make analogies between their bodies and elements or aspects of everyday life (e.g. viewing their body as a home, servant or vehicle). When the body starts to let the person down and the unified form fails to function, the body might, for example, be seen as a traitor, an enemy or a prison.
Most perceptions of dementia reflecting dualism emphasise a living body without a mind. This is sometimes linked to a particular mode of existence, namely a living death as demonstrated by the following quote:
“with the number of people who are over 65 increasing significantly each year our society is today finding itself faced with the problem of keeping a large share of its population from joining the living dead – those whose minds are allowed to die before their bodies do.”(Kaplan, 1953 cited in Ballenger, 2008, p.500)
A “social death”
Dementia is often described as a “social death”. A social death is understood to mean “as good as dead” and that the person concerned has been discounted in social terms (Sweeting and Gilhooly, 1997). It has also been defined as “a situation in which there is absence of those behaviours which we would expect to be directed towards a living person and the presence of behaviours we would expect when dealing with a deceased or non-existent person (Kastenbaum, 1969, p. 15). The concept of dementia as a social death is closely related to other concepts of relevance to the way that dementia is perceived and portrayed such as the mind-body split, loss of personhood, lack of quality of life and the metaphor of the empty shell which are discussed elsewhere in this report. The term now seems to be fairly widespread, with such references being made in novels, the media and films, and even by healthcare professionals (Kirkman, 2006).
The term is not limited in use to people with dementia as different groups of people are at risk of being perceived as socially dead. These include people with a lengthy fatal illness, the very old and those suffering from a loss of personhood. Sweeting and Gilhooly (1997) point out that these three characteristics (i.e. old age, fatal illness and loss of personhood) are commonly associated with people with dementia. They carried out semi-structured interviews with 100 carers of people with dementia to explore their perceptions of dementia as a social death, and applied post-interview ratings based on their observations of the carers and on the carers’ responses. The findings revealed that just over a third of carers believed and behaved as if the person with dementia were socially dead. One of the carers in this category stated:
“… it really dawned upon me that my mother was gone, that this person wasn’t my mother any more. It’s hard – really the person has died and you’re just left with the body, that’s how I feel about her… the realization hit me that night – I was talking to her and she wasn’t there – and I cried all the way home. I thought “My mother is dead”.(Sweeting and Gilhooly, 1997, p. 104)
One third of carers were rated as neither believing nor behaving as if the person were socially dead and one fifth of carers as holding this belief but not acting as if the person were socially dead. A small number of carers behaved as if the person were socially dead but did not perceive them as such. It should be noted that neither Sweeting and Gilhooly nor any of their participants used the term “social death”. The ratings of perceptions of dementia, which the researchers grouped together under the term “social death”, were based on responses to questions about perceived consciousness and contact with the environment, the continued importance of the person’s dignity, anticipation of the person’s “biological death” and the value of their life. Observations of behaviour were also made such as the extent to which carers ignored or paid attention to the person with dementia, attended to him/her and included him/her in activities, and acted in accordance with his/her wishes. Numerous associations were noted between the characteristics of the carer and the person with dementia, and various perceptions contributing towards the perception of a social death. The likelihood of carers behaving as if the person with dementia were socially dead was found to be higher when the person with dementia did not recognise the carer, when s/he behaved in ways which carers found challenging and when the current and premorbid relationship between the person with dementia and the carer was reportedly poor (Sweeting, 1991).
Related ethical issues
Personhood and human dignity
If, at any stage of the disease, people with dementia are not accorded the basic biological status of human being or their inherent or socially acquired personhood is not recognised, there is a risk of failure to respect their human dignity and failure to treat them with the same level of respect and care as that given to other people. This risk is heightened in today’s society which places great emphasis on cognition and tends to root selfhood and personhood in cognitive abilities, especially language, rationality and memory, with little attention being paid to emotions (Ballenger, 2006; Post, 1995). This may result in objectification and affect quality of life. Poor care may include failure to respect privacy, inadequate nutrition and pain management, stigma, abuse, lack of consideration for their relationships to other people and their known wishes, failure to communicate, and failure to provide human contact and reassurance.
Whereas Kitwood considered that personhood (as something that is transcendent, sacred and unique) led to an ethical obligation to “treat each other with deep respect” (Kitwood, 1997, p.8), he was also aware that the personhood which is socially bestowed on a person could be withheld and that people with dementia might find that personhood which was attributed to them at birth being eroded either in the social context (e.g. through malignant social psychology) or as a result of social exclusion. He described this as having a potential negative effect on their personhood and wellbeing but also contributing towards a further deterioration of their condition. Arguing in favour of the perception that people are embodied agents who act and interact within a particular cultural and historical context, Hughes (2001, p. 91) suggests that undermining the personhood of people with dementia amounts to “an undermining of our own standing as persons amongst persons”.
Many people with dementia lack (to varying degrees) the necessary capacities to engage socially and effectively with others. Communication becomes problematic as dementia progresses and people with dementia may withdraw from social contact. At the same time, other people may distance themselves from them, thereby resulting in isolation and social exclusion. In Kitwood’s spiral of dementia, he emphasised how the loss of personhood was related to neurodegeneration, isolation and ultimately, death. The cognitive approach to personhood is a very individualist/rights-based approach and does not address the socially constructed nature of personhood or perceptions of innate personhood (Kitwood, 1997). It offers no hope for people with severe cognitive impairments to retain their personhood and places responsibility for fulfilling the criteria for personhood solely with the individuals concerned. It does not recognise the responsibility of other people to facilitate communication and interaction or to support various capacities. This is not the case with infants who nevertheless start out in life incapable of meaningful, verbal communication.
The perception of people with dementia as being absent or socially dead may also contribute towards social exclusion and isolation as relatives and carers will not make the necessary effort to communicate, based on the belief that it is pointless as the person is “not there”. Such reactions towards the person with dementia may have a negative impact on care, which according to Kitwood (1997) may contribute towards a downward spiral marked by a deterioration in the condition of the person with dementia. According to Stirling (2010), who was drawing on the principles of ‘social role valorisation’ (Wolfensberger, 1998), persons with dementia deserve to be not only treated with respect but to live in our midst and be valued so that we can learn from them how to live well with high levels of impaired ability.
Survival and care
Mind-body dualism is not just about separation. It represents a dialogue of loss and the loss is linked chiefly to the loss of the mind. In today’s Western society, the body may be important in relation to the emphasis on youth, the dislike of signs of ageing and the cultural rejection of perceived ugliness but the mind is valued in terms of identity and personhood. There may be an assumption that a body without a mind is no longer a human being (Van Gorp and Vercruysse, 2011). This also fits in with the concept of social death, whereby the person is perceived as being socially dead even though the physical body lives on. Both ways of perceiving people with dementia may have serious consequences when it comes to making life and death decisions in life-threatening situations.
Emphasising the importance of cognition may also endanger the existence of people with dementia. Drawing on Kant, Cooley (2007) suggested that people with dementia had at some point a moral duty to commit suicide in order to preserve their moral self and not become a burden on society. Whilst this is a radical perspective which few people might accept, similar reflections might nevertheless influence end-of-life treatment decisions by healthcare professionals, relatives and people with dementia, notably involving the withdrawal of food and liquid.
The perception of people with dementia as being “socially dead” may lead to inadequate care at the end of their lives. This fails to respect their right to the same quality of care and treatment that other people receive. Perceiving dementia as a social death may fuel the process of depersonalization, withdrawal and social alienation, which Kitwood described as contributing towards the actual death of the person concerned, and which may also reinforce the out-group status of people with dementia, therefore reinforcing their stigmatization.
The concept of a social death has been linked to people with dementia being perceived as “sufferers”, lacking insight and being unable to articulate their situation, although this has started to change in the last few decades due the increasing focus on personhood (Bartlett and O’Connor, 2007). Just as Kitwood highlighted the threats to personhood, his work also emphasised the need to be aware of personhood, of the psychological needs of people with dementia. He drew attention to need to explore and use different methods of interaction e.g. including validation and facilitation. Much of the positive work and ethical approaches to dementia care which have developed in the last two decades are firmly grounded in the recognition of personhood and in holistic/inclusive perceptions of dementia.
Sweeting (1991) found that the perception of dementia as a social death was often not associated with behaviour towards the person with dementia as if s/he were dead. It is possible that the perception of dementia as a social death may serve as a coping strategy for some carers, enabling them to carry on providing care and at the same time protecting their own emotional and psychological wellbeing. For some people, anticipatory grieving for various losses may be a coping strategy to enable carers to move on and adapt to changes in the person with dementia. Such grief does not rule out the maintenance of a relationship with the person with dementia. It may reflect acceptance of changes in the person’s behaviour and a less rigid understanding of personhood.
In the remainder of this section, we look at perceptions which do not deny the person status of people with dementia or their status as a living human being, but which focus on fundamental changes within the person and to some extent may reflect a perception of a mind-body split:
- Becoming a different person/a stranger,
- Loss of self.
Becoming a different person/a stranger
People often have a feeling that a person with dementia is not the person they once were, even though they are still a human being and alive (Ngatcha-Ribert, 2004; Walters et al., 2010). Some carers have described the emotional pain they experience when their relative or friend with dementia no longer recognises them and no longer reacts/interacts as they used to in the past. Perceived difference may be related to the person with dementia forgetting shared memories of the past, communicating in a different manner, changes in emotions, expression, interests and physical appearance and style, and failing to recognise familiar people. Although people with dementia can often remember things that they experienced or did many years ago, many will forget significant aspects of their own (recent) history.
In the context of perceptions of somebody not being the same person, sometimes the focus is on the loss of their perceived essence as a person (e.g. spirit, soul or mind) and the replacement of that with the essence of another person. This may reflect body-mind dualism as it may be presumed that the former mind has been lost and replaced by another with the result that the person is now, for all intents and purposes, somebody different. This is sometimes described in terms of a stranger.
“[Alzheimer’s] robs not only the person who has it but the family members – their memories of who that person was are threatened to be replaced by the stranger who comes to live in that body.”(Leeza Gibbons, cited in Basting, 2009, p.40)
Sometimes, there may be a belief that the person is, technically speaking, the same person but that they are no longer the person with whom one had a unique relationship. In this sense, becoming a different person would be a figure of speech based on the perceived radical change of personality and of the way that a person with dementia is experienced by other people.
“I guess from a person who’s looking at the person with dementia, it would be their essence maybe that might have changed and they don’t respond to you as they would have before, they don’t interact with you as they would have before. So I guess the essence of that person has changed to a certain extent. OK, yes that person, you know is my mum, is my dad, is my brother but they don’t actually recognise me, they don’t recognise where they are. So I guess from my point of view, I would probably find the person different, yes. Although, yes, that person is my mum, my dad, whatever, they are no longer the same. (Gove, 2012, p.261)
Another way to explain the perceived changes in the person with dementia is as a process of becoming strangers. Here, there is no question that the person is not the same person. Rather the emphasis is on a gradual process of emotional and physical alienation whereby the relational ties with the person deteriorate to such an extent that the person becomes like a stranger. In a Canadian study involving 15 carers this was described in terms of “dimensions of becoming strangers” (Wuest et al., 1994). Other carers have described a process of detachment and “drifting away” but Graham and Bassett (2006) point out that perceptions of togetherness as opposed to detachment may differ between the parties involved. The person with dementia, who is perceived by the carers as being detached, may actually perceive him/herself as being very much involved but this is not interpreted as such by the carer.
On the other hand, there are frequent reports of people with dementia not recognising their relatives, partners and friends. The following extract describes a carer’s fear of a possible future mutual lack of recognition whereby she would consider her husband a different, new person and he would literally not recognise her.
“You are destined to live only with the memory of who he was. How can you say goodnight to your sweetheart and wonder, will this be the night from which reason will never again waken? Will morning find that new person in my bed, the man who will not know who I am or why I am in his bed?”(Davis, 1989, p.140 cited in Oppenheimer, 2006)
Loss of self
The “self” amounts to more than being a person. In keeping with the belief that the mind is something that can be detached from the physical person, and that somebody can become a different person, many people perceive dementia as leading to a loss of self (i.e. of being aware of oneself as a particular person with a particular history). Kitwood (1997, p. 15) stated,
“Each person has come to be who they are by a route that is uniquely their own; every stage of the journey has left its mark.”
Beliefs about how the self can be lost tend to be closely related to beliefs about what constitutes the “self”. As with personhood (i.e. what makes us a person and leads to others considering us as such), the self is often understood as being closely linked to beliefs about the role of cognition and autobiographical memory (Fazio and Mitchell, 2009). Kitwood (1997) also emphasised the importance of meaning making, of how people make sense of situations and of the self being constructed through interaction with others, resulting in the deployment of learned resources for action. Drawing on social constructivism, Sabat (2001) describes three types of self: the self of personal identity (usually presented in the form of information relating to I, myself, me, etc.), the self of mental and physical attributes and the self which is presented to the world (a kind of presented self or persona). Speaking about identity and selfhood, Snyder suggests that it is in the context of the constant, on-going exchanges between people, involving verbal and non-verbal communication, that
“we define ourselves and express that selfhood in the act of being acknowledged and understood by another. In this light, interpersonal communication is a mutual co-constructed process in which each person offers definitions of self and of what is real for others to interpret, affirm or challenge.”(Snyder, 2006, p. 259)
The presentation of various selves through interaction and communication with other people gradually becomes problematic for many people with dementia. People with dementia may eventually have difficulty communicating their selves and other people may have difficulty recognising those selves. According to Sabat and Harre (1992), the externally defined self is more susceptible to decline as a result of dementia than the internally defined self. They suggest that other people may contribute towards what they then perceive as a loss of self through the way that they view and treat people with dementia (Sabat and Harré, 1992).
Despite the common perception of the loss of self, several researchers have reported evidence of a persistence of self in spite of considerable cognitive impairment (Clare et al., 2008; Fazio and Mitchell, 2009), including both the internal and external self even amongst people with severe dementia ( Small et al., 1998). The concept of the self is often a reflection of the way that one is perceived by others (Mead, 1934) as the perceptions of others may be internalised and affect self-perception. In one study, people with dementia described themselves as being “lesser people” after diagnosis and as belonging to a more marginalised and devalued group. One person spoke of his desire to protect his reputation and avoid being looked down on (Katsuno, 2005). This suggests a tendency to anticipate the reaction of other people based on one’s own beliefs about how dementia is perceived in society, which highlights the importance of reflecting on the way that dementia is currently perceived and portrayed.
Related ethical issues
The meaning of becoming “a different person”
There are philosophical debates as to the criteria for being a person and the factors which might justify the claim that somebody is no longer the same person. McMillan (2006) highlights the difference (in philosophical debates) between numerical and qualitative identity. He uses two examples for which it is necessary to imagine that he deliberately and secretly changes a lectern the night before it is to be used in public. In the first example, he paints it yellow and in the second example, he changes it for an identical-looking one. The yellow lectern, he explains, represents a qualitative change in that people who had seen it before might recognise that the qualitative identity of the lectern had changed. The apparently identical, but actually completely different, lectern might be mistakenly perceived as the being the same, but the numerical identity of the lectern would have changed. McMillan expresses the view that “folk notions of identity focus more upon “qualitative” identity or the features that a person has” (2006, p.63). In the context of discussions about the ethical implications of perceiving somebody with dementia as a different person, it is therefore important to avoid taking statements too literally, and to recognise that these may be themselves metaphorical ways of describing drastic changes. Indeed, Lesser (2006) suggests that if people really believed that the person they loved had gone away and been replaced by another, it would be easier to accept than the belief that the person was still there but unable to recognise them or to continue the relationship with them.
Relationships and the responsibility for care
Being perceived to have become a different person or a stranger has implications for issues related to care ethics such as the importance of relationships, a person’s unique identity and their personal history. Within the context of person-centred care, the focus is on the person with dementia as a unique individual and on his/her unique needs and wishes. For professional carers, changes in the person with dementia, even fairly dramatic changes, may be less important as they did not have a prior relationship with that person and in part, as they are paid to care. For informal carers the situation is somewhat different as they are providing care to a specific person because that person is who s/he is (i.e. not because it is their professional duty to do so). The relationship and how it has evolved over time is therefore important to their dedication, motivation and in some cases to their sense of obligation to care for that person. People may feel less inclined to care for a stranger or for someone who no longer recognises them and, as with perceptions of dementia as a social death and in connection with the loss of personhood, this may represent a threat to their survival.
Changes in the nature and quality of relationships
The perception of the person with dementia as a stranger may have a negative impact on relationships, especially between couples, as the shared past, planned future, common values, commitment and many of the important things which held the relationship together and made it meaningful, might appear to have gone. In addition, the feeling that the person with dementia has become a different person or a stranger may lead an otherwise faithful partner to engage in a relationship with someone else. Depending on one’s moral and religious views, this may be considered by the people concerned and others as positive (enabling the partner who does not have dementia to benefit from a meaningful relationship and perhaps continue to care for the person with dementia) or negative (e.g. immoral and unfair, perhaps leading to a total breakdown of the existing relationship with implications for the continued provision of care).
Perceiving the person with dementia as having no concept of self or as a different person may result in a gradual withdrawal of social investment in that person. Relatives and friends may communicate less with the person, involve him/her less in activities, visit less and behave towards him/her in a different manner, one which attributes little in any importance to his/her preferences, habits, idiosyncrasies, past life and established relationships. This may limit the possibilities for the person with dementia to define and express his/her self as that self is not recognised and taken on board. This would have implications for his/her wellbeing, the maintenance of relationships and the provision of person-centred care. On the other hand, Luntley (2006) suggests that even if the self were considered as having been eroded, the person with dementia could still be considered as “an object of moral concern” as s/he would still be a subject capable of experiencing pain, distress and a range of human emotions.
Existential fear and isolation
Perceptions of dementia leading to a loss of self may nevertheless contribute towards people not wanting to seek a diagnosis but also, if diagnosed, to fears about the experience of dementia that lies ahead. Fears about a potential loss of self may also be linked to an interest in self-preservation and to a deep-seated fear of existential isolation and meaninglessness (Yalom, 1989). Relationships may change, people may come and go but you have/are yourself. The fear of losing one’s self implies total isolation in which existing and even potential relationships with other people which provide meaning and connectedness, would be meaningless, as would goals and hopes, as the person is no longer him/herself but already an unknown other person with whom one has no connection or vested interest.
Perceptions reflecting the possibility of losing one’s “self” are often fairly black and white – you either lose it or you don’t, and some people believe it is just a question of time as to when you lose it. Markus and Nurious (1986) have proposed the concept of possible selves which focuses not only on current knowledge or perceptions about the self but also on hopes and fears about how or what a person would like to become. Cotrell and Hooker (2005) explored various perceptions of hoped for and feared selves of people with AD and came to the conclusion that the construction of such selves often reflected adaptive responses to dementia. Whilst over half of participants with AD in the study reported well-developed dementia related selves, many mentioned non-dementia related selves. Many “hoped for” selves were mentioned and those linked to the domain of the family were linked to affect which emphasises the importance of social and familial ties. The concept of possible selves creates a more balanced, flexible and dynamic approach to perceptions of the self, and avoids an over-emphasis on loss. Were this to become more commonplace, the fear linked to a loss of self might gradually lessen. However, Cotrell and Hooker (2005) suggest that the prospect of cognitive impairment is so threatening that people do not tend to construct such selves in advance. Ironically, the perceived loss of self may be part of what makes dementia a frightening prospect, which suggests the need for greater awareness about how people experience and cope with dementia.
In this section, we focus on perceptions of what people with dementia are like. For example, what do they look like, and how do they act and react within society. More specifically, we will explore images/mental representations and stereotypes of dementia, the way that people with dementia are often perceived as unwilling or unable to reciprocate and finally, perceptions related to vulnerability, dependency and burden. The first topics are therefore:
- Images/mental representations of dementia,
Images/mental representations of dementia
The images or mental representations that people have of dementia may be based on people with dementia they have encountered and even cared for. Some may be composite images, made up of what they have heard or believe about dementia, based on their exposure to various cultural portrayals of dementia within society and resulting from their interaction with other people. There is perhaps a tendency to focus on images which are more representative of fairly advanced dementia (e.g. with references to difficulties eating and communicating, maintaining personal hygiene and difficulties with continence). This could be because physical signs of dementia are more visible in the later stages, that such images are particularly disturbing and socially salient and hence retained, or due to the stereotype of dementia being the advanced stage (see next sub-section on stereotypes).
“It’s as though that’s it, you are dribbling and nodding, and that’s Alzheimer’s. That’s the picture of Alzheimer’s. But we are sitting all here talking perfectly normally. We have got Alzheimer’s of some form, we are not nodding and dribbling”(a person with dementia)(Alzheimer’s Society, 2008, p.45)
“One day I came in and saw her . . . what can I say . . . everything around was messy she was messy, disgusting . . . as a person from the slums, filthy, dirty, totally soiled.” (an informal carer)(Werner, Goldstein and Buchbinder, 2010, p. 162)
With regard to people with mild dementia, references have been made to behaviour and to subtle facial signs such as a look in the eyes which suggests that a person is confused or not following the conversation (Gove, 2012). The limited information about the way that people with mild to moderate dementia are visually perceived may also be linked to the way that people with dementia and their relatives and close friends often deliberately or otherwise try to hide any signs of dementia. This may be part of the process of coping with dementia (e.g. keeping up the pretence of good health or denial of the condition) and has also been linked to the consequences of dementia being perceived as a stigma (Blum, 1991; MacRae, 1999; Werner & Heinik, 2008). In MacRae’s qualitative study involving semi-structured interviews with carers, a high degree of collusion between people with dementia and carers was observed, especially between spouses.
The images that people have of dementia may be gradually changing as people with dementia are increasingly talking openly about their experience of dementia, explaining not only what it is like to have dementia but also showing by their presence and by communicating with other people what dementia “looks like”. In many cases, people with dementia do not have a perception of themselves as being dramatically different from other people in the sense of looking, feeling or acting differently.
“I’ve heard people say “You don’t look like you’ve got dementia”, fancy that! How are we supposed to look?”(Devlin, MacAskill and Stead, 2007, p. 52)
“I don’t really feel anything really. I mean I feel now as I did five or ten years ago. I am doing all sorts. I can drive. I mow the garden. I can decorate.”(Alzheimer’s Society, 2008, p.45)
When symptoms of dementia become more or less apparent, they are counter-balanced by numerous other aspects of a person’s personality and behaviour, provided that people do not focus only on the symptoms of dementia. However, similarity does not stand out and is therefore often disregarded. Moreover, members of the European Working Group of People with Dementia have reported cases where a diagnosis of dementia has been called into question on the grounds that the person concerned “appears too normal”. This suggests that negative images of dementia are sometimes so strong that a more positive image is considered inaccurate.
Stereotypes of dementia
Stereotypes are attributes/characteristics which are assigned to groups of people who share another attribute which is socially salient. Examples include the belief that girls are not good at maths (Cvencek, Meltzoff and Greenwald (2011) and that obese people are lazy, unmotivated, and lack self-discipline (Carels et al., 2013; Puhl and Heuer, 2009). They can also be understood as simplified mental images. It may be difficult to differentiate between people’s knowledge about the symptoms of dementia and possible stereotypes. Some symptoms or perceived experiences of dementia may be mentioned as they are the ones which people find most disturbing or striking, and not necessarily because people think that they are applicable to everyone with dementia. People are often unaware of the stereotypes they hold and may have implicit stereotypes which differ to what they explicitly believe (Scholl and Sabat, 2008). These implicit stereotypes can be uncovered by subliminal exposure to stereotypical words but this procedure is not widespread in studies which explore people’s perceptions of dementia. The following sub-sections highlight a few common stereotypes.
Although positive stereotypes exist, stereotypes ignore diversity within groups and are therefore often inaccurate and even insulting. For example, in studies about people with mental disorders, stereotypes such as weird, bedraggled and stupid have been recorded (Lauber et al., 2006). However, in a study designed to measure the impact of a training course promoting the bio-psycho-social model of dementia, fifteen college students were asked to write down up to ten “descriptors/ideas/characteristics” that came to mind when they thought about AD (Sabat, 2011). Whilst all fairly negative attributes, the responses mainly reflected a series of possible symptoms and scenarios linked to dementia. However, with the exception of “burdensome”, they did not reflect the kind of derogatory and hostile judgements and generalisations mentioned in relation to above-mentioned study mental disorders. Nevertheless, some of the mental images of people with dementia mentioned in the previous section suggested fairly negative stereotypical beliefs about dementia.
Advanced dementia and severe cognitive impairments
Some GPs have reported their awareness of a stereotype of dementia consisting just of advanced dementia (i.e. associating dementia with symptoms which typically occur later on in the disease trajectory) and being in a nursing home (Gove, 2012).
“A typical stereotype is someone in a rest home, just eh, not doing anything, sat there, looking gormless. When you start talking about dementia, that’s the image people have. They kind of miss out the years before that.”(Gove, 2012, p.146)
Dementia is frequently associated with a range of symptoms which people generally perceive as being unpleasant or disturbing. In most cases, they can be described in terms of deficits. People with dementia are frequently stereotyped as possessing these deficits, not only in the later stages when some are more common but throughout the course of dementia, with remaining abilities being ignored (Sabat, 2008; Swane, 1996). Eisdorfer, a psychiatrist, highlighted his perception of the discrepancy between lay stereotypes and his own observations of people with dementia.
“We have a classic notion of what the disease is and we have a stereotype. It is (.../…) usually sort of a little old woman who is doddering around, sitting in a geriatric chair, not knowing time, place or person. This is not the way we see the disease. We have the disease in one engineer [about 62 years old] who still, after two and a half years, shoots golf in the eighties and wins tennis cups.”(Eisdorfer, cited in Ballenger, 2006, p.130)
However, Ballenger suggests that the engineer described in the above quote is increasingly becoming the stereotype of the “dread disease” when it is not perceived in terms of senility.
Dangerous and disturbing behaviour
People with mental disorders are often considered by the general public as being recognisably different, dangerous and unpredictable (Miles, 1981; Thornicroft, 2006). This is how they are regularly portrayed by the media and it is possible that this contributes towards fear and stigma. Clearly, the danger whichsomepeople withcertainmental disorders represent is worrying to the general public. Moreover, when people perceive a mental disorder as resulting from a disease of the brain, they experience more fear, especially in the case of schizophrenia. This leads to an increase of about 50% in labelling behaviour (Angermeyer and Matschinger, 2003).
As dementia is often associated with mental disorders, people with dementia are sometimes perceived as dangerous (Swane 1996), particularly if they show certain behaviours (disinhibited sexual behaviour or ‘aggression’) and psychiatric symptoms (e.g. delusions, hallucinations, paranoia,). These behaviours and psychiatric disturbances are often grouped together as ‘behavioural and psychological symptoms of dementia’ (BPSD) or NeuroPsychiatric Symptoms (NPS). People with any type of dementia may react in some of these ways or experience some of these symptoms, but some are more common in some forms than in others. According to the International Psychogeriatric Association (2002), aggressive behaviour and visual hallucinations are more common in Lewy body dementia, whereas emotional instability is prominent in vascular dementia.
Studies which have measured perceived dangerousness of people with AD have reported low scores (Weiner et al., 1988; Werner and Davidson, 2004; Werner, 2005; Werner and Giveon, 2008). Moreover, in Werner’s 2005 study, a positive association was found between perceived dangerousness and prosocial reactions. A negative association might have been expected but this finding may be partly due to the fact that danger was operationalised as danger to self and others, perhaps resulting in people making an association with safety issues rather than aggression. Exceptionally, a fairly high score for perceived dangerousness (i.e. 41.6%) was recorded in a survey-based study of 500 lay people in Brazil (Blay and Peluso, 2010).
Dangerousness is not just about physical aggression. Cohen-Mansfield and Billig (1986) divided aggressive symptoms into those which are physically aggressive and those which are verbally aggressive. The latter might include screaming, shouting, swearing and temper outbursts. This could be very disturbing to relatives or friends of a person with dementia who has seldom if ever acted in that way. Hinshaw (2007) suggests that people may be afraid of others who seem to be out-of-control or have lost contact with reality as this may lead to behaviour which risks violating their personal space or physical integrity.
Even when people with dementia behave in a way which is perceived as being aggressive, this does not always provoke fear. Sometimes, there is a realisation that their behaviour might be an appropriate response to a difficult situation rather than a consequence of dementia. The following quotes are from a person with dementia and a GP.
“That's such an important thing, for people to realize that lots of times, you know how we've always been labelled as being violent or reacting inappropriately, but if people were to think deeper than that, and see deeper than that, lots of times we're reacting to something, there's atrigger…”(Mitchell et al., 2006 – in Dupuis et al., 2012)
“They are often frightened and I think their needs are not always taken care of. If you move somebody ultimately round the ward in a hospital multiple times and confuse them and don’t explain what you’re doing, then it’s no wonder they get frightened and potentially lash out.”(Gove, 2012, p.77)
Reports by registered nurses of violent incidents occurring in 60 municipal care homes in Sweden revealed that there was no significant difference in the frequency of violent acts towards other staff and care receivers by residents with dementia compared to residents with no dementia (Josefsson, Sonde and Wahlin, 2007). This lends support to the observation in the above quote that whilst people with dementia may sometimes react more readily with aggression, especially in care settings, they are no more violent than other people.
Quality of life and capacity
People with dementia are sometimes stereotyped as having no quality of life or capacity for pleasure, being blissfully unaware, passive and having lost their control, identity and dignity (Corner and Bond, 2005; Devlin et al., 2007; Graham et al., 2003). It has repeatedly been shown that carers perceive the quality of life of people with dementia as being lower than people with dementia perceive it themselves (e.g. Conde-Sala et al., 2009; Sands et al., 2004; Thorngrimsen et al., 2003).
Based on the findings of a German study which measured people’s reported readiness to support funding or make cutbacks in expenditure for the care of people with AD, the authors suggest that some people perceive that a life with AD is “unworthy of living” and hopeless, and hence not worth saving (Schomerus, Matschinger and Angermeyer, 2006). In keeping with other conditions, perceptions of greater disease severity were linked to more reluctance to make cuts. However, in the case of AD, perceptions of it being life threatening were associated with increased willingness to accept financial cuts.
Common sense might suggest that incompetence would be a stereotype of dementia but the findings from one study suggest that this is not the case (Werner, 2006). On the other hand, people’s beliefs that if they had dementia, they would not be taken seriously and would be considered “stupid and unable to do things”(Boustani et al., 2008), may reflect a stereotype that people with dementia lack capacity. Some allied healthcare professionals have also expressed concern about lay people perceiving people with dementia as being unintelligible and incapable of social interaction (Nolan et al., 2006).
Capacity should not be considered as being limited to the cognitive domain. It touches on every aspect of life and affects quality of life in many ways. Zeisel, for example, emphasises the capacity of people with dementia to experience and enjoy art. He describes how art touches and engages the brain in a more profound way than other activities and how people with dementia tend to “express what they think and feel at the moment” (Zeisel, 2010, pp.71-2).
Related ethical issues
Individuality and wellbeing
Focusing on negative, disturbing and stereotypical images of dementia and ignoring ways in which people with dementia resemble other members of society may contribute towards an unrealistic fear of dementia and interfere with authentic communication with people with dementia. This may contribute towards stigmatization and be damaging to existing and potential relationships between people with dementia and others.
As the likelihood of developing dementia increases with age, everyone is to some extent at risk of having dementia one day. Consequently, the way that dementia is perceived has greater personal relevance than some other conditions as many people are aware that they might one day be in the position of the person they are observing. This could be summed up by the idiomatic expression “There but for the grace of God go I” (i.e. a personal reflection that someone else’s misfortune could be one’s own if it weren't for some kind of divine blessing).
The focus on generalisations about people with dementia and the lack of attention to the personal needs and preferences of people with dementia may lead to the individuality and uniqueness of each person being overlooked. At the same time, there is a risk in trying to challenge stereotypes about people with dementia having no quality of life of overlooking individual experience, depressed feelings and actual depression (i.e. of failing to see people with dementia for whom life really does lack quality). Acknowledging individual experience and taking measures to prevent and if necessary to treat depression are also practical ways to address stereotypes and this involves looking at the way that people with dementia are treated, listening to what is important to them and providing good quality and appropriate care.
The fear and disgust sometimes associated with the images that people have of dementia, may lead to a distancing from the disturbing images and hence from the person. If the various characteristics perceived are considered as belonging to a person with dementia (i.e. s/he is passive, dirty and incontinent) and not the result of the physical, emotional and care environment in which the person finds him/herself (i.e. s/he is not being provided with social and cognitive stimulation or being provided with appropriate assistance with toileting and hygiene), the person’s physical and emotional wellbeing may be threatened.
Dignity and respect
Negative perceptions and associated personal judgements are likely to be reflected back to people with dementia. This may affect their self-esteem and sense of dignity. Often, the images we have of dementia reflect the level of dignity and respect, as well as the level of care and consideration, accorded to people with dementia by other members of society. For example, the practice of having “toilet rounds” in some nursing homes (Alzheimer Europe, 2012) or inadequate staffing levels may result in many people with dementia sitting in soiled clothing or continence pads. Similarly, the limited amount of time dedicated to one-to-one contact between staff and people with dementia or to organised activities during the day means that many people with dementia are under-stimulated, which may result in premature loss of capacity and apathy. Consequently, the images that people have of dementia are often biased towards negative or feared symptoms, which may be based on stereotypes but may also sometimes be based on inferior standards of care tolerated by society.
Stereotypes of advanced dementia, dangerousness and people with dementia having no quality of life may contribute towards fear, which has implications for stigma, social distancing, and inappropriate and poor quality of care. Often, stereotypes of people with dementia being aggressive or dangerous seem to imply that these characteristics derive from the condition itself. There may be a tendency to overlook external factors which might be contributing towards or which might help explain the observed behaviour. Adopting a bio-psycho-social perspective on dementia might contribute towards a more understanding and comprehensive overview of the situation, avoiding the attribution of blame and identifying contributing environmental factors and the person’s possible needs.
Discrimination and survival
Perceptions of people with dementia, especially severe dementia, having no quality of life could in some cases be stereotypes and in others, individual assessments of the quality of life of a person with dementia. Stereotypes of a lack of quality of life could have serious implications for end-of-life decision making by influencing life and death decision-making in the absence of knowledge about the wishes and feelings of the person with dementia. There are therefore ethical implications linked to beneficence, non-maleficence, wellbeing, dignity and personhood.
Physician-assisted suicide is illegal in most EU member states but allowing a person to die through withholding food or liquid, or not attempting resuscitation, is often a clinical decision for which healthcare professionals, in the absence of an advance directive, consult relatives and carers. Presumed quality of life is a factor which frequently contributes towards decision making. Stereotypes of people with dementia being unable to do anything for themselves and totally dependent on others may also contribute to such decisions. Williams et al. (2007) highlight two studies which indicate that 62% of the general public in the Netherlands and 48% in Finland were in favour of active voluntary euthanasia for people with dementia. In their own survey involving 725 members of the general public in the UK, percentages of people who would be in favour of their partner with mild, moderate or severe dementia being allowed to die (i.e. passive euthanasia) were 61.1%, 64.3% and 68.9% respectively. Percentages were slightly higher for the same decision with regard to themselves. There were cultural/ethnic differences in that the White respondents were significantly less in favour of life-sustaining treatments than their Black, Asian and other ethnic counterparts. Perceptions of quality of life or capacity in relation to dementia were not measured and conclusions cannot therefore be drawn but it would be helpful to determine whether there is a relationship between the two.
Williams et al. (2007) suggest the usefulness of measuring the attitudes of people with dementia about this issue. This might be ethically difficult, however, as involvement in such a study or merely inviting people with dementia to participate may be emotionally disturbing and result in a decision which would not otherwise have been made, especially if they considered dementia a stigma and felt that people with dementia were not valued and were perceived as a burden.
Ability/willingness to reciprocate
Perceived lack of reciprocity can be detected in the images that people have of people with dementia (i.e. being passive, immobile, withdrawn and unresponsive) and in terms used to describe or refer to people with dementia as being absent or lacking a mind. Communication with people with dementia is sometimes described in terms which emphasise it being one-sided, unrewarding, awkward and even embarrassing. Failure to give something back in the context of relationships has also been noted, sometimes resulting in people no longer fulfilling a role or the nature of roles changing. Giving something back can even take the form of a smile or a look in the eyes which shows that the person with dementia recognises the people around him/her. Loss of the ability to recognise familiar faces is frequently described by carers as being difficult to handle. However, Haaning (2000) found that caregiving in Danish couples, where one spouse has dementia, can be an enriching experience for the caring spouse.
The findings from a qualitative studying involving 100 dyads of people with AD and their carers suggest that give and take in care relationships is somewhat richer and less straightforward than it is often portrayed. Graham and Bassett (2006) explain that people with dementia are often perceived as passive, unresponsive recipients of care and carers as active providers, and that research into caregiving often focuses on carers (e.g. on “caregiver burden”, stress, their coping strategies and their support needs). Drawing on the literature, they point out that caregiving is often perceived as a unidirectional relationship of care for a care recipient who lacks agency and power and is not an equal partner in the relationship. Based on their interviews and ethnographic notes, they highlight a range of responses from people with dementia in receipt of care such as acceptance/resistance, cooperation/conflict, togetherness/detachment which suggest that people with dementia do not passively experience dementia or care. A key finding from this study is that carers often have normative expectations of reciprocity based on “an old self” (i.e. the way the person with dementia reciprocated before s/he had dementia) and that such expectations result in them failing to perceive subtle ways in which the person with dementia is currently reciprocating and engaging with his/her environment. Behaviours and reactions, which appear to be incongruent with the person prior to dementia, are interpreted as being a consequence of the disease and the person with dementia is not recognised. This is an interesting perception of the care dyad in which the carer is the one who is perceived as failing to recognise the person with dementia and notvice versa, although the latter is often also the case.
People with dementia may be perceived as eventually failing to contribute towards society through meaningful participation in social, cultural, civil, political and religious events, but also through the production or provision of things that are valued in society, including the fulfilment of social roles. This reflects perceived lack of reciprocity at the level of society. Some GPs, for example, were concerned that people with dementia are perceived by society as taking more than they are able to give and of the consequences of such perceptions.
“But you know if you take the generality of what one senses is the general mores of this country, I think people value production. They value people who produce things or people who make you feel good, people who serve you. And those are kinds of things that the elderly in general and the demented in particular don’t do.”(Gove, 2012, p. 172)
“It’s like a group of people waiting to die, who no longer contribute. I mean we all expect older people when they are retired not to be working but they still give a lot back in other aspects of life but I think that starts to…., even that goes you know, in people with dementia.”(Gove, 2012, p.292)
Related ethical issues
According to the evolutionary theory of stigma of Kurzban and Leary (2001), which focuses on the process of social exclusion, reciprocity is important for social cohesion but failure to reciprocate tends to be tolerated if the people concerned are unable rather than unwilling to do so (e.g. due to disability or advanced dementia). However, perceived lack of reciprocity on the part of people with dementia may contribute towards dementia being perceived as a stigma (Gove, 2012) and hence to the possibility of people with dementia being stigmatized or experiencing self-stigma and this has ethical implications as mentioned earlier.
Some of the ways that people with dementia are perceived as failing to reciprocate cannot be attributed solely to the individuals themselves. For example, failure to reciprocate in the context of communication and social interaction may be dependent on a whole range of factors such as the context and atmosphere of care, the availability of opportunities and activities, whether people spend sufficient time with people with dementia and whether they have the knowledge and skills to interact or facilitate interaction with them. If people with dementia would benefit from AD drugs but are not receiving them, then their potential capacity to reciprocate is being unfairly restricted. Finally, the restriction of freedom experienced by many people with dementia in residential care, linked to freedom to express their individuality, values and preferences (see Alzheimer Europe, 2012), may result in boredom, depression and apathy which are not conducive to reciprocity.
Failure to reciprocate by acknowledging recognition of other people has been associated with social distancing and reduced caring activities for people with dementia (Liu et al., 2008 in Werner et al., 2011). Vernooij-Dassen et al. (2011) describe reciprocity as a basic human need which is often unmet in frail, older people. This would also apply to people with dementia. They emphasise the importance of recognising that need and providing opportunities for reciprocation within the context of care. People without dementia therefore have a moral duty to facilitate reciprocity in people with dementia.
Graham and Bassett (2006) suggest that in failing to perceive subtle signs of reciprocity on the part of the person with dementia, carers may take over too much. In addition, they may unwittingly contribute toward the person with dementia losing their remaining capacities, thus reducing the possibility for agency and self-confidence, including the ability to reciprocate. The message from Graham and Bassett highlights the need to be more flexible in interpreting the behaviour of people with dementia and to avoid “writing them off” as unwilling or unable to reciprocate. Carers also have a responsibility to look for signs of give and take and not to position the person with dementia through normative expectations which are perhaps no longer meaningful for the latter.
Vulnerability, dependency and potential burden
People with dementia are often perceived as vulnerable (i.e. relatively or absolutely incapable of protecting their own interests). They are also often stereotyped as vulnerable in the sense that a generalisation is made that all people with dementia are vulnerable (Bartlam et al., 2010). Perceptions of vulnerability may be associated age, cognitive impairment, being dependent on others for care and/or being a resident in a long-term care institution. Additional factors may co-exist based on being a member of an ethnic minority group, gender, physical disability, sexual orientation and living situation (e.g. being homeless, a prisoner or nomadic). Vulnerability may also be contextual and influenced by dynamic processes which are not permanent (e.g. based on a particular situation or context). It is likely that perceptions of people being vulnerable are accompanied by beliefs about the kind of care and support they may need. In the context of dementia, this creates a link to the concept of dependency and depending on how this is perceived, to that of burden.
Perceptions and the portrayal of people with dementia as being vulnerable have also been associated with the kind of care, support and treatment they are offered. Due to the tendency to focus on the advanced stage, dementia is often associated with increased dependency and the need to move into residential care. Perceptions of care homes being places where discrimination and abuse occur become associated with perceptions of what it means to have dementia. In many care homes, people with dementia are persistently over-prescribed anti-psychotic medication despite the recognised risk of such drugs for people with dementia and the fact that they have only shown limited efficacy for the treatment of BPSD (Banerjee, 2009). This can be considered as structural discrimination as the practice often primarily reflects the policy of homes rather than individuals and as such practices would not be considered acceptable for other groups of people (e.g. infants or children). Fortunately, this does not happen in all homes and a gradual change in perceptions is evident from recent calls to reduce inappropriate drug prescription and the restraint of people with dementia (Alzheimer Europe, 2012; Banerjee, 2009).
Nevertheless, a survey, involving carers, people with dementia and staff in care homes combined with a “YouGov” poll of 2,060 adults into perceptions of care homes, revealed that the principal concern of 53% of UK adults in connection with their relative moving into a care home was that s/he would be abused. In the “YouGov” public poll, 70% of adults reported being fairly or very scared about the prospect of one day moving into a care home (Alzheimer’s Society, 2013). Some healthcare professionals have also reported concerns about people with dementia being subjected to healthcare discrimination such as unequal access to treatment and surgery, being denied access to certain daycare centres and nursing homes and receiving sub-optimal, inadequate and inappropriate care and support (Cahill et al., 2008; Gove, 2012).
Although forms of structural discrimination persist, it is heartening to note that such practices are increasingly being challenged and that there is an awareness that the vulnerability of people with dementia is heightened in some situations where they are dependent on others.
Dependency is generally seen in a negative light. Many people find it difficult to accept that they are dependent on others and may have internalised common perceptions of dependency as a burden to loved ones and to society. In the context of an observational study in a care home, Small et al. (1998) found that residents with dementia resisted being positioned as dependent by care staff and cooperated more when treated as independent. Sometimes, perceptions of dementia caregiving reflect an understanding of dependency as an opportunity to give something back for care or love received earlier or in terms of solidarity, interdependence and mutual support (Alzheimer Europe, 2001; Hanning, 2000).
“It’s nice to be able to do for my father what he did for me as a child and as an adult.” [Danish carer](Alzheimer Europe, 2001, p.27)
“I understand that we all need someone sometimes. I am giving my mother something she gave me before i.e. love and care.” [Spanish carer](Alzheimer Europe, 2001, p.27)
Graham and Bassett (2006) describe another perspective which is one based on cooperative relationships that typically involve doing things for each other, picking up when the other cannot, prompting without judgement and doing things for the other person based on the desire to do so rather than a sense of duty or obligation. One man who was interviewed stated in relation to helping his wife:
“I’m taking care of things that I WANT to do, and I don’t mind doing it, but I don’t HAVE to take care of Helen(Graham and Bassett, 2006, p.339)
The perception or portrayal of dementia as a condition leading to dependency is reflected in national, European and international reports and documents which recognise that the cognitive and physical impairments associated with dementia interfere with independent living and necessitate organised support, care and treatment. Recognition of the dependency of people with dementia on individuals and the state can be interpreted and portrayed in different ways, and as something that is positive, negative or neutral.
The World Health Organisation describes mental disorders as a burden, stating,
“The burden of mental disorders is great. 1. Mental disorders are prevalent in all societies. They create a substantial personal burden for affected individuals and their families, and they produce significant economic and social hardships that affect society as a whole.”(WHO/WONCA, 2008, p.3)
The term “the global burden of disease” has also been used to describe the population impact of various conditions, such as dementia, on mortality and disability (Alzheimer’s Disease International, 2012), which creates a clear link between disability and burden. The term “burden” is also widely used with specific reference to the impact of care on relatives and partners of people with dementia, as well as at the level of society in relation to the cost of care and a decreasing proportion of potential future carers, both formal and informal. The Prince of Wales drew attention to the “emotional, social and economic burden we will all face if (dementia) is left unchecked” (Alzheimer Europe, 2009, p. 46). In this case, it is dementia, the condition itself, that is considered a burden and the phrase “we will all face” could be interpreted as uniting people with and without dementia in addressing dementia rather than singling out people with dementia as the problem, or even the burden.
The perception of dementia as a burden is often either directly stated or implied in references to the scarcity of funds for healthcare and the subsequent strain on the economy (George, 2010). As demonstrated in the study by Schomerus et al. (2006) on decisions related to public funding of various health conditions, the notion of expenditure on AD was relatively well supported by the general public in Germany. However, reports of resentment linked to the cost of care for older people are sometimes expressed. The following quotes demonstrate older people and people with dementia are sometimes perceived as a financial threat and burden.
“There’s going to be less and less patience with the fact that we’re going to have a massive rise in over 85-year olds and hence a massive rise in dementias and hence a smaller number of people who are paying the pension and care for all these older people. You could almost imagine, God help us, that it could be like George Orwell saying that you need euthanasia by a certain age.”(Gove, 2012, p.244)
“I don’t think it’s right that money is taken away from children and the like… to treat the elderly and the demented.”(Corner and Bond, 2004, pp. 148)
Swane (1996) describes a “burden paradigm” in which people with dementia are perceived solely as a strain on the family and their “deviant behaviour” as a specific strain on professionals in institutions. Research into the care of people with dementia and reports about the impact and experience of care heavily reflect this burden paradigm (Swane, 1996).
In a large-scale survey involving 618 carers in six countries, most carers described their role as isolating (62%), depressing (69%), exhausting (89%) and life changing (94%), but almost one third described their role as rewarding and/or fulfilling (27% and 30% respectively). The researchers described this as surprising and heartening, and point out that this was perhaps even an underestimate based on people’s tendency to focus on the difficulties they encounter (Bond et al., 2005). Another large-scale, Internet-based survey involving 949 members of the general public, 500 physicians, 250 carers and 50 “payors” from five countries reported:
“All respondents recognised that AD has a devastating impact on the lives of the affected person and his or her family. Caregivers experience a physical burden as well as emotional stress, social isolation and in some cases financial loss….”(Jones et al., 2010).
The researchers acknowledged that a minority of carers reported a positive aspect to their situation but emphasised that the study highlights the burden of caregiving and serves as a challenge to society and the health care community to provide effective solutions so that the positive aspects of caring can be enhanced. In this way, they report carers’ perceptions of the impact of dementia as a potential burden but also as a positive experience for some people.
Related ethical issues
Balancing protection and respect for autonomy
The perception of people with dementia as a vulnerable group rather than as individuals with varying levels, risks and types of vulnerability is problematic. A group-based approach to vulnerability detracts somewhat from the perception of the potential vulnerability of all human beings (as being capable of suffering) as well as of the increased vulnerability of individuals based on reasons which are not immediately evident. It increases the risk of perceiving vulnerable people as “the problem” and to overlooking similarities and differences amongst people with dementia and between them and other people. Many groups require the same type of protection, some people belong to more than one group and some members of a group may need additional protection with regard to certain issues but not others (DuBois, 2008). Considering people with dementia, as a whole, as vulnerable (or dependent) amounts to stereotyping. This may also involve attaching additional attributes to people with dementia such as weak, needy, powerless and lacking capacity etc. which might contribution towards their stigmatization. Such generalizations might result in their over-protection, threaten their right to exercise autonomy and in some cases to the premature loss of capacities. A generalised perception of vulnerability or dependency could thus reinforce paternalism and reduce possibilities for positive risk taking, which is a part of everyday life. There may also be power issues involved in that people with dementia who are perceived and thus positioned as vulnerable may find it difficult to defend their right to take certain risks (e.g. to walk about freely, get out of bed or go out for a walk), especially if part of the perceived vulnerability consists of being unable to assess risk. Within institutional care settings, positioning all people with dementia as vulnerable (combined with litigation fears of staff linked to possible accidents) may result in unnecessary restrictions of freedom for some residents.
An individualised/non-group based approach to vulnerability and dependency is required, involving the assessment of specific vulnerabilities, support requirements and possible risks. By being more precise about what kind of vulnerability is an issue in a particular situation and not considering people with dementia in a blanket fashion as vulnerable or dependent may contribute towards such perceptions being helpful to people with dementia and not working against them.
Give and take/solidarity
In older people, especially those who have dementia, dependency is often portrayed in a negative light (e.g. as a problem and a potential cost) and the many ways in which they have already contributed towards society may be overlooked. The ways in which they could still play an active role in society may be limited by a lack of understanding about dementia and/or a failure to provide people the support they need.
Hockey and James (1993) point out that dependency can occur at any stage in the life continuum by people who are ill or well (e.g. in varying degrees through infancy, accidents, illnesses and old age etc.). People are all dependent on each other in numerous ways throughout the whole course of their lives (e.g. for food, clothing and services but also for more emotional, social and psychological needs). Agich (2003) suggests that as dependency is not limited to old age and frailty, it should not be expressed as a consequence of such. Dependency may be experienced by some but not all elderly people and by some but not all people with dementia and in varying degrees.
Dependency can be reframed in a more positive light as interdependence involving mutual responsibility and the sharing of a common set of principles reflecting solidarity. The principle of solidarity is closely linked to that of justice/equity as it covers the issue of cooperation between people. It recognises that some groups of people are potentially vulnerable and may need support. At different stages of their lives people are more or less likely to be in a position to give or receive support and this is not limited solely to age. Sometimes, support is portrayed in fairly neutral terms which reflects solidarity and citizens’ rights to the services and support they need but sometimes, especially in times of economic hardship, it is portrayed in terms which suggest burden or a crisis.
Self-esteem and scapegoating
The polarisation of the concepts of independency and dependency serves as a means to demarcate and position certain people with dementia in relation to the rest of society and may lead to their loss of power and devaluation. The use of the term “burden” and the measurement of it by researchers may reinforce perceptions of people with dementia and the experience of care as a burden, particularly when combined with alarmist and sensationalist reporting in the media of increasing numbers of people with dementia and the cost of care. Sometimes the term burden is used in studies to categorise or report findings even though the participants did not use that specific term and might not feel that caregiving or people with dementia are a burden. The feeling that one has become or may become a burden is likely to be damaging to a person’s self-esteem and may contribute towards the fear of dementia and even affect advance decision making about end-of-life treatment options.
If considered a burden to society, people with dementia may become scapegoats in that they are perceived as being responsible for a worrying economic situation and using up valuable resources which could be used in other domains. In this sense, it is as if they are blamed for having dementia and there is a presumption that they are less deserving of the expenditure, which is a reflection of their perceived lack of value. Governments decide which aspects to emphasise and how to organise expenditure. It is a choice to highlight the cost of dementia care and to make limited reference to other costs such as those linked, for example, to military defence, the maintenance of roads or the entertainment of dignitaries.
 See Murphy (1987) and Ryan (1976) for more about scapegoating and blaming the victim.
We are exposed to messages and information about dementia in our everyday lives through the media (newspapers, television, radio, magazines and the Internet). This may be in written, auditory or visual form. Information about dementia may be communicated directly or in a peripheral manner and we might attend to it actively (e.g. by watching a documentary or reading an article) or passively (e.g. a secondary character in our favorite soap opera happens to have dementia or there is a discussion on the radio which we hear without paying much attention to it). Flicking through a magazine, we might come across an advert for dementia drugs or donations for research, or a story written by a carer or a person with dementia which might attract our attention. In this section, we examine how dementia is portrayed in the media with particular reference to the use of frames and the issue of accuracy as well as possible sensationalism.
The use of frames in the media
The media has been described as a powerful tool to communicate information about health issues, both creating awareness and influencing perceptions, beliefs and attitudes (Doyle et al., 2012). However, the same tool has been reported as portraying negative images of dementia, perpetuating stereotypes about ageing, and inciting fear and stigma (Clarke, 2006; Kirkman, 2006).
Within the context of the social constructivist approach mentioned earlier, Van Gorp, Vercruysse and Van den Bulck (2012) suggest that the media uses “frames” to offer a certain perspective to audiences and the general public. Frames are described as socially shared “organising principles” which offer
“a perspective, a view of reality, but at the expense of other possible angles, which disappear from the field of vision(Van Gorp et al., 2012, p.389)
As frames form part of the culture in which they are used, they are common to both senders and receivers and as such, the process of framing can easily go unnoticed. The frames draw on the values, metaphors and images which are part of the taken-for-granted socially constructed knowledge about how the world functions and which enable people to process complex raw experience into more comprehensible patterns which are thus more manageable (Lakoff, 2004). They are often too obvious to be challenged.
Frames lead to different ways of interpreting “reality” and could also be used in the context of various forms of strategic communication. Van Gorp et al. (2012) identified six frames and for each proposed a counter-frame, not aimed at replacing the frame but rather at offering an alternative perspective which is more nuanced but also credible and comprehensive to the general public. For example, a common frame is that of “the invader”, a kind of personification of dementia (other alternatives being a monster or a thief), often accompanied by fighting or defensive terminology. Other frames included “faith in science” (focusing on scientific/biological explanations), reversed roles (focusing on a “return to childhood”) and “no reciprocation” (focusing on lack of reciprocity and the loss of a shared past). The two most dominant frames, according to Van Gorp et al. (2012) were “dualism” (i.e. the separation between mind and body and the loss of the mind) and the fear of death (focusing on death, degeneration and the start of an ordeal). The frames and counter-frames are as follows:
Dualism of mind and body
Unity of body and mind
The strange travelling companion
Faith in science
The fear of death
Each in turn
The good mother
Source: Van Gorp and Vercruysse, 2011
The frames were identified through an extensive search of a diverse range of materials and the qualitative analysis of emerging frames by means of open coding. Some of the counter frames, on the other hand, were actively sought using the same “framing devices” for the frames and therefore had a strength of conviction linked to the dominant frame. Others were new and did not draw attention to the dominant frame. Van Gorp and Vercruysse (2011) point out that everyone uses the dominant frames whereas the counter-frames were used by people with dementia, carers and their friends.
Accuracy and sensationalism in news reporting and soap operas
Drawing on studies into the way that dementia is portrayed in the media, Van Gorp and Vercruysse (2012) highlight three issues:
- There is a focus on the terminal stage of dementia which becomes representative of the whole trajectory of dementia,
- People speak on behalf of people with dementia who rarely have the opportunity to speak for themselves and
- The burden of dementia on the family is emphasised.
Representations of dementia in the media and from official sources may sometimes be confusing and conflicting. Jolley and Benbow (2000) accuse the media of presenting negative discourses and fuelling stereotypes. Moreover, messages from the media can be incorrect and deliberately misleading in an attempt to sensationalize a news event and attract readership.
Nevertheless Doyle et al. (2012) suggest that this may be changing for the better. They analysed the quality of reporting on dementia (as well as on seven other categories) between 2000/2001 and 2006/2007 in the Australian media. Despite some deterioration regarding the use of medical terminology and in focusing on the disease rather than the person, large improvements were reported in that sensationalist reporting and the use of outdated, inappropriate or negative terms were much less, and there was much more provision of information about help services. Positive representations of dementia have also been noted by Kessler and Schender (2012) in a study of German news magazines (in Zeilig, 2013).
In the United Kingdom and Ireland, there have been mixed reactions but mainly positive ones to the portrayal of dementia in soap operas (Alzheimer’s Society, 2011; Nolan et al., 2006). Commenting on the storyline surrounding the screen character Mike Baldwin in “Coronation Street”, the Alzheimer’s Society (2011) commented that it provided “an opportunity to raise awareness about dementia at a time when it was not high on the political agenda”. The performance of Johnny Briggs as Mike Baldwin was lauded for its accuracy but the storyline criticised for his rapid deterioration and death. Another character in “Coronation Street”, Eileen Grimshaw played the role of a woman with early onset dementia. In the American television series “Grey’s Anatomy”, the mother of the character Meredith Grey develops AD and Meredith is concerned that she might develop it too. Stevenson (2013) highlights the way that such portrayals of dementia, as well as those where dementia is covered in a more peripheral way rather than through a main character, bring awareness to a widespread audience, highlighting issues such as early-onset dementia, heritability, relationships, combining work with caring and mistreatment.
In a long-running soap opera in the Czech Republic, one of the main characters (Mr Kral) is portrayed as having advanced dementia. The series accompanies Mr Kral, a shopkeeper and the life and soul of a small family business called “The Kingdom of Toys”, right from the first perceived symptoms and his fear of diagnosis through to more advanced symptoms and apparent changes in character and behaviour. This seems to have been done in a sensitive way and provides viewers with a possibility to empathise with the character over time without recourse to fear tactics and sensationalism (Kasparkova, 2013).
Related ethical issues
The use of frames has ethical implications as they can be deliberately used to increase the likelihood of dementia being perceived in a particular way. The impact that this might have on people with dementia depends on the aspects or possible ways of perceiving dementia that the frame is designed to convey. The aim of a particular frame may, for example, be to create fear, emphasise the impact of dementia on carers or on society, justify the need for research or the value of medication or appropriate care, or simply to create a sensational headline. The particular frame used is presumably considered the most effective way to achieve such aims. The deliberate use of certain frames, or combinations of frames, to convey a biased image of dementia, focusing on certain aspects at the expense of others, is a form of persuasive communication which is not far removed from propaganda which also aims to influence or change public opinion (see section on strategic communication). Van Gorp et al. (2012) have promoted a more critical approach to making sense of dementia as they have drawn attention to the way that the portrayal of dementia is packaged and presented to the general public. They have also emphasised the importance of making greater and more resolute use of counter-frames without minimising the seriousness of dementia or denying the last phase of dementia.
The identification of both frames and counter-frames might be seen to imply that there are certain ways of portraying dementia which are good and others which are bad. However, the frames have merely been identified as providing a narrow perspective of dementia which does not reflect the complexity of the condition and which focuses in some cases on aspects of dementia which people find disturbing. The counter-frames were devised to provide a more balanced, nuanced view of the aspect of dementia being presented in the frame but are dependent on the perceptions of a smaller group of people and the way that they perceive dementia. Some might be challenged based on a different interpretation. The concept of natural ageing in relation to dementia, for example, is a highly controversial topic and considered by some people as being inaccurate and interfering with timely diagnosis. Clearly, both frames and counter-frames are open to individual interpretation and may be rejected, missed or challenged. Both will develop and change over time as the taken-for-granted reality of dementia also develops.
With reference to British soap operas, Hargrave and Gatfield (2002) suggest that they are a useful means to present sensitive issues in an engaging way, allowing viewers to learn without being lectured to, but that due to time constraints and the need to avoid boring the audience, issues are sometimes only explored at a superficial and dramatically engaging level. In their analysis of audience attitudes to soap operas, they found that only 54% of viewers (2,100 respondents) expected information about social issues to be factually correct. They conclude that audiences want soap operas to be realistic rather than real, providing “a window into other people’s lives”. Nevertheless, the study also suggested that viewers often identified with certain characters, related to certain topics and frequently discussed the societal issues addressed afterwards with other people. Consequently, soap operas should ideally portray the medical aspects of dementia as accurately as possible and realistically reflect the social reality of dementia in today’s society.
The reported responses of some people to portrayals of dementia in soap operas, particularly those made by carers and people with dementia, suggest the importance of their feeling understood and encouraged by the potential of such soap operas to contribute towards a better understanding of dementia (Hargrave and Gatfield, 2002), which has implications for attitudes towards people with dementia. On the other hand, with reference to the rapid decline of the screen character, Mike Baldwin (mentioned above), his decline was atypical and based on complications such as a stroke and pneumonia. This may have contributed towards unrealistic perceptions about the timescale of dementia amongst many viewers (Elliott, 2006). This may further contribute towards fears about dementia and about receiving a diagnosis. Consequently, soap opera producers perhaps have a moral obligation to accurately and sensitively portray dementia, even if this is not a high priority for viewers, due to the impact that such portrayals can have on people’s emotional wellbeing.
Films represent another medium through which to portray dementia and which may influence people´s perceptions of dementia and people with dementia. In this section, we look at the kinds of images and information about dementia, as well as emotions, conveyed through films, and consider how this might be received and interpreted by viewers.
The overall approach
As with soap operas, film producers do not merely set out to provide an accurate description of dementia. They have an interest in obtaining a certain impact, in providing entertainment, suspense and dramatic effect, allow themselves a certain artistic license, working within the framework of various film genres and positioning potential spectators. Everything that the spectator sees or hears (and even the absence of image and sound in some cases) is motivated, leading the spectator to make assumptions, to draw on common frames, to have expectations or to make interpretations. Spectators make sense of films using the same cognitive processes for “perceiving, conceiving, analogizing, deducing, explaining and deliberating” as they do in the real world (Oakley, undated, p.26). However, various techniques may be used to create a mood or arouse emotions and to provide the spectator with a window on the world which is actually a picture of a certain “reality”.
There are different levels of meaning in films based on the referential content (basically what happens, like a synopsis), the explicit content (conveyed directly and openly through the mouths and actions of the characters) and the implicit content (which is less obvious but may, for example, be detectable by following through the development, change and growth of characters throughout the film) (Jacobs, 2013). In addition, there is a symptomatic content which is often ideological in that it represents the person opinions of the filmmaker and may, consciously or otherwise, reflect contemporary concerns. In the context of dementia, examples of symptomatic content might include how people with dementia are treated within society, how dementia affects relationships, the role of informal carers versus the state in the care of people with dementia or the perceived place of people with dementia in society. Such issues may be a reflection of the historical period, the cultural context and the filmmakers own experience as s/he is also involved in the social construction of meanings around dementia within a particular social and historical context.
In most films about dementia, the person with dementia is not the central character. S/he tends to be the catalyst in that s/he triggers events and consequences for other people, and the perspective of carers is often prominent (Scheidt et al., 2013). According to Scheidt et al. (2013) even when the focus seems to be on the person with dementia, such as in the films “Iris” and “Away from Her”, the dominant point of view tends to be that of the spouse. The film “The Iron Lady” is deemed an exception. The absence of the perspective of the person with dementia is open to interpretation. It could, for example, been interpreted as an objectification of the person with dementia, a preoccupation with the impact of dementia on carers (perhaps even suggesting that it is harder for carers) but perhaps also a portrayal of the difficulties understanding and communicating with people with dementia or in some cases of the stereotype of blissful lack of awareness.
The clinical picture of dementia
In the context of cinema films, the explicit portrayal of the clinical picture of dementia has been found to be fairly accurate but with an emphasis in some films on behavioural disturbances and aggressiveness and some films suggesting sudden periods of full insight (Segers, 2007). In these films (24 released between 1970 and 2004), the people with dementia depicted were mostly in their seventies and eighties and highly educated. A more recent analysis of the portrayal of dementia in 23 films (released between 2000 and 2012) also revealed a fairly accurate representation of dementia but with an emphasis on cognitive symptoms (mainly memory, disorientation and word finding), fluctuations of consciousness and disengaged behaviour (apathy, being in one’s own world and lack of facial expression) (Gerritsen, Kuin and Nijboer, 2013). The authors of this recent study highlight the inconsistencies in some films, especially with regard to the portrayal of memory, insight and recognition. For example, they described how in the film “The Notebook” the main character is portrayed as having moments of lucidity and intense contact with her husband after long periods of not recognising him. In another film, “The Iron Lady”, Gerritsen et al., (2013) highlight the problematic portrayal of the main character (Margaret Thatcher) as regularly and promptly switching back to “reality” when interrupted during hallucinations.
The emotional impact of films about dementia
Whereas authors of books can describe in detail the emotional experience of the various characters, the portrayal of emotions in films may be achieved by a variety of means such as through image, movement, background sound, lighting, symbolism and the angle, depth or perspective of the shot. It is not always necessary or appropriate to explicitly state the emotion supposedly being experienced. In the case of dementia, doing so may be further hampered by the portrayal of the character as having communication difficulties.
In addition to portraying the emotional experiences of certain film characters, films are also invitations for viewers to feel emotions. According to Smith (2004), the invitation to feel can be accepted in a number of ways or recognised but rejected, and some people may not have the prerequisite skills to read the emotion cues offered. Consequently, the film makers cannot guarantee a certain emotional reaction. Differences in emotional responses may be dependent on people’s individual experiences which have shaped their emotion networks and in the case of dementia, their familiarity with dementia and whether they have already been emotionally affected by it in a positive or negative way. This is in keeping with Gerritsen et al. (2013) who report that some films about dementia have been judged by some as creating a distance to the main character with dementia and being about loss and hopelessness, and by others as giving rise to feelings of empathy, hope and acceptance. Nevertheless, there is limited information about the emotions which films about dementia arouse and what those emotions reveal about the way that dementia is perceived as a possible future prospect in relation to oneself.
Commenting on the filmsIris, The Notebook and Do you remember love?Basting (2009) suggests that they all tell a story of tragic loss and questions whether dementia is only a tragedy and if not, what has been left out of these stories. This highlights the importance not only of the emotional or other content of films but on which aspects of dementia are not portrayed. She cites a comment from another critic of the filmAway from her, which was that the film was perhaps “less a drama about Alzheimer’s disease than a cinematic poem of love and loss” (Basting, 2009, p. 49). This raises the question as to whether every film in which the central character has dementia must necessarily be about dementia. There is almost a presumption that it must be as if that is all that the person with dementia could possibly represent.
Expression of self and of personhood
Neither loss of self nor loss of personhood was one of the 54 categories identified in the content analysis of 23 films by Gerritsen et al. (2013) as they were looking for examples of the portrayal of clinical features of dementia. However, they point out that in just over half of the films, people with dementia were portrayed as having something to offer, both socially and emotionally, even in the advanced stage of dementia. This implies a portrayal of people with dementia as active agents, able to reciprocate and interact with others either verbally or non-verbally.
In the novel “Out of Mind”, Bernlef (1988) suggests that without language, there is no longer a story to tell or a person to hold on to (recounted by Swinnen, 2012). However, personhood and self are also depicted through action in the form of maintaining social roles. In the Swedish film “Wellkåmm to Verona, the main character is described by Swinnnen (2012) as being “an undeniable subject” based on the roles he is portrayed as possessing, namely a skillful seducer, a convincing actor, a canny director and a persistent lover. This is in stark contrast to the withdrawn behaviour (e.g. being in one’s own world, lack of initiative, passiveness, apathy and lack of facial expression) and communication difficulties portrayed in the films analysed by Gerritsen et al. (2013). The two types of portrayal may in effect provide a balanced portrayal of dementia.
Drawing on Post’s (1995) description of hypercognitivism, Swinnen reflects on the possibility that film producers contribute towards maintaining the stigma of dementia and to people’s perception of a dissolution of the self through their emphasis on cognitive difficulties (such as language and memory).
With reference to a documentary film (“Mum”), Swinnen (2012) suggests that the portrayal of caring for a person with dementia invites viewers to perceive the continued personhood of the mother who has dementia as well as the importance of relationships in connection with caring. This provides a contrast to portrayals of dementia which focus on loss of personhood and the breakdown of relationships.
Several films in which one of the principal actors has dementia portray the impact of dementia on relationships. In most cases, these films are melodramatic love stories in which the couples are portrayed as victims of dementia which is eventually the cause of their separation (Wulff, 2008). In some films this separation is both physical (in terms of resulting in a geographical distance) and emotional (resulting in a loss of recognition of the partner, of their collective memories and of intimacy and affection). Swinnen (2012) suggests that the film makers introduce the idea of a “love miracle” whereby the caring partner enables the person with dementia to remember the affection they had/have for each other. Gerritsen et al. (2013) describe this as the portrayal of a false hope that many carers have of their partner with dementia remembering their relationship. Alongside, the total breakdown or loss of the relationship, some of the clinical features of dementia (i.e. cognitive, behavioural and emotional) are portrayed in films as affecting the ability of people with dementia to engage with other people and to maintain meaningful relationships. Dementia is sometimes portrayed as contributing towards conflict between other members of the family. However, in the film “A separation” (by Asghar, 2011), which portrays tension between a husband and wife, partly in connection with the care of the man’s father who has dementia, in response to his wife’s argument that the father no longer recognises him, he responds, “But I recognise that he is my father” which renders unnecessary the return of the memory of the relationships upon which the false hope of the “love miracle” rests (Sayem, 2012).
Related ethical issues
The portrayal of dementia in films often fails to portray people with dementia as active agents and in depicting a personal, inescapable tragedy, also in terms of their relationships with other people, this may lead to the objectification of people with dementia. If the various cognitive losses are interpreted by viewers as being linked to the inevitable progression of the disease, this may lead to reduced efforts to communicate with the person with dementia and a failure to consider other factors which might contribute towards the person’s loss of various capacities. A vicious circle may then develop or a downward spiral, as described by Kitwood, involving increased isolation and neurodegeration.
There is a need to be more open to different possible interpretations of the behaviour and capacities of people with dementia. For example, the observation that a person with dementia cannot accurately name a familiar person does not necessarily mean that s/he does not know or more importantly value that person. S/he may recognise the quality and value of his/her relationship with that person but be unable to put a name to the face.
The portrayal of dementia in films may also contribute towards the fear of dementia and thus contribute towards the stigma surrounding dementia as fear is a major contributing factor to stigma (Jones et al., 1984; Stangor and Crandall, 2003). Although it must be borne in mind that most films about dementia, which people watch at the cinema, are not documentaries, film producers are nevertheless advised to portray major health issues in as accurate a way as possible. Making a parallel to other major health concerns, there would be a public outcry if films were seen to be conveying misleading messages (e.g. that the consumption of alcohol and heroine by teenagers was harmless).
Last Updated: Monday 24 February 2014