September is World Alzheimer's Month and we're publishing blog posts submitted by current MSc in Dementia students as part of the module 'Dementia: Critical Starting Points', The group were asked to write about language and dementia.
This post is by student Jenny Bennett, who volunteers for The Alzheimer's Society.
Sticks and stones may break my bones but words...
Language holds a central position in the construction of our assumptions, values and beliefs, which inherently shape our attitudes, interactions and social practices, both individually and on a societal level (Bartlett & O’Connor, 2010; O’Sullivan et al., 2014; Fazio et al., 1999).
When considering dementia within the context of social construction, that being our shared understanding and assumptions within society, the way dementia is perceived in present times is too often the result of past theories of the syndrome itself.
Dementia has historically followed a medicalized approach, placing it within the boundaries of pathology and disease (Bosco et al., 2018; Harding & Palfrey, 1997; Whitehouse & George, 2008). However, dementia can also be considered as a natural continuum of aging and part of the human experience (Ballenger, 2017; Whitehouse & George, 2008).
Fellow MSc in Dementia student Catherine Wood discusses the powerful impact words can have on people with dementia:
The discourse around dementia
Without doubt there is an associated stigma and apparent resistance within society to change our historical consensus, and the rationale for this may lie with the dominant medical discourse through which dementia continues to be viewed (Shakespeare et al., 2019). The focus on diagnosis, neurodegenerative decline, deficits and finding a cure clearly positions dementia before the person. Attention that is focused predominantly on symptoms and loss of ability and the negative connotations that inevitably follow, will certainly influence public perceptions (De-Vugt & Droes, 2017; O’Sullivan et al., 2014; Shakespeare et al., 2019; Swaffer, 2015; 2019; Zeilig, 2012).
I consider a prime example of this to be the portrayal of dementia within the media, of which there exists a presiding double-edged approach. The first is the emphasis on the catastrophic, through the use of metaphors such as ‘the rising tide’ and the ‘the ticking time bomb’. People are described as ‘victims’ and ‘sufferers’ or having ‘lost their mind’, and of being a ‘burden’ on their family, indeed society. Notions of loss and tragedy are depicted as the principle theme (Brookes et al., 2018; George, 2010; Kirkman, 2006; O’Sullivan et al., 2014; Peel, 2014; Reed et al., 2017; Van-Gorp & Vercruysse, 2012).
Expressions such as ‘dementia sufferer’ and ‘victim’ suggest a degree of helplessness and distress, thus stripping further away at a person’s dignity and their ability to feel empowered and in control. It is therefore easy to understand how the element of fear is projected by the use of such prejudicial and stigmatizing language, and how this in turn reinforces negative and inaccurate stereotypes for public consumption (Bartlett & O’Connor, 2010; Swaffer, 2015).
The second, and more recent phenomenon, is associated with prevention and individual responsibility. I refer to media headlines and attention-grabbing language such as ‘beetroot can fight dementia’, ‘the 10-step diet that could PREVENT Alzheimer’s’ and self-help books claiming, ‘memory decline and dementia are preventable’. The onset of dementia clearly portrayed as controllable highlights a potentially problematic hypothesis (Atherton, 2017; Peel, 2014).
Guidance on language about dementia is becoming more accessible. Several bodies including The Dementia Engagement and Empowerment Project (DEEP) and The Alzheimer’s Society Dementia Friendly Media and Broadcast Guide highlight journalists and the media, amongst others, as their target audience. They encourage the use of alternative terminology that can be used to not only represent a more respectful and humanistic approach, but also one that is accurate (Bould, 2018; DEEP, 2014).
I suggest that the continued prevalence of inappropriate, stigmatizing and potentially misleading language portrayed within the media, together with their apparent refusal to comply with language guidelines, is perhaps linked to the simple fact that shocking headlines along with sensationalist language ultimately draw in more viewers and sell more papers.
Making room for nuance
When considering advocacy and research organizations within the dementia sphere we are often faced with a barrage of ‘battle’ and ‘fight’ talk. Headlines declaring ‘dementia as the UK’s biggest killer’, surely insights a degree of fear in its audience. Could this, like the media and its viewing figures and newspaper sales, be an influencing tool to encourage monetary donations?
Author, advocate and person living with dementia Christine Bryden, suggests this is indeed the case. The use of negative stereotypes, language and images may assist with loosening purse strings for fund raising but fuels the promotion of people living with dementia as ‘non-persons’, thus reinforcing the stigma. (Bryden, 2016). It is necessary to add that in some cases; these organizations are also the providers of guidance in relation to positive language when talking about dementia. A question around paradox certainly springs to mind.
Language used within the medical profession can represent a contentious area. People put great faith and reliance upon physicians and often interpret their word to be gospel. However, as a general rule, physicians do not receive training in dementia-specific diagnosis delivery, aside from the generic and basic ‘breaking bad news training’ (Dooley et al., 2018).
A recent Alzheimer’s Society survey found that only 37 per cent of GPs felt they had sufficient basic training about dementia (Alzheimer’s Society, 2019). Evidence suggests that physicians often find communicating a diagnosis in an honest and sensitive manner difficult, with the avoidance of terms such as ‘dementia’ or the actual subtype in some instances (Hansen el al., 2016; Kissel & Carpenter, 2007; Milne, 2010).
As a person living with dementia, Wendy Michell stated in an interview with Aitkenhead that the language often used by physicians is very negative – medicalised view of dementia along with the notion that nothing can be done (Aitkenhead, 2019). Goldsmith (1996:25) suggests, “people are more than their illnesses, and an overreliance on the biomedical viewpoint can rob us of appreciating the subtleties and complexities of a person in their personal and social context”.
Kate Swaffer, a person living with dementia, concurs. She suggests that the medical approach has in fact led to most of us thinking about the condition before the person, which she believes “leads to a sense of treating people as other, or us and them”, thus creating a potential barrier to a more person-centred and humanistic approach (Swaffer (2015:8).
Politics and government are not immune to using frequent war and military-style metaphors when referring to dementia. David Cameron claimed that “we need an all-out fight-back against this disease” (Cameron, 2014). Recently, Prime Minister Boris Johnson suggested “the UK should be leading the fight” against dementia (Sky News, 2019). This aggressive style of language clearly invokes a sense of threat and will surely perpetuate stigma rather than lead us to a more humane dialect.
It is noted that war metaphors can indeed mislead our perception of what is medically possible in relation to treatment, and perhaps more importantly, provide the notion of false hope in people living with dementia and their families (Brookes et al., 2018; George et al., 2016).
The reality of our rhetoric
It is evident to me that the language commonly used to refer to people living with dementia, is principally of a negative persuasion. The implications undoubtably play a significant role in how people perceive and behave towards others and how such language affects people living with dementia themselves (Swaffer, 2014).
Research suggests that stigma acts as a major barrier to people seeking and accessing information, support and diagnosis (Alzheimer’s Society, 2008; Iliffe et al., 2005; Swaffer, 2015). It is also acknowledged that people often feel they are treated as ‘other’ or ‘lesser’ and as such feel they are essentially demoted within society (Milne, 2010; Patterson et al., 2018; Swaffer, 2015).
There is evidence of people being embarrassed, having a sense of shame, and essentially hiding their diagnosis from others due to the use of negative language and its associated stigma (Bryden, 2005; Milne, 2010; O’Sullivan et al., 2014; Swaffer, 2015).
It is my experience that the continuing view within society is one of loss and tragedy (Cahill, 2018; Reed et al., 2017; Van-Gorp & Vercuysse, 2012). The embedded perspectives that exist about dementia, through our socially constructed views, and the continuing use of negative, fearful and stigmatizing images and narratives continue to monopolise our attention.
I further believe that as a society we have a general acceptance towards people with physical health symptoms and the subsequent difficulties they experience, but we do not hold the same degree of empathy towards people with cognitive-related symptoms (O’Sullivan et al., 2014).
Dementia today is generally viewed as cancer was 20 plus years ago. It was often referred to as the ‘C word’, steeped in stigma and fear, a taboo subject for many (Dementia Alliance International, 2014; Peel, 2014). Whereas today, with cancer, I propose there exists a narrative of comradery, a ‘let’s stand together’ united front, a ‘get out there and lead the best life you can’ approach and mentality of the masses.
Considering a different approach to understanding dementia is not a new phenomenon. The steady move away from viewing dementia through an exclusive medical frame allows for a more holistic approach to be adopted (Kitwood, 1997; Shakespeare et al., 2019).
The person-centred care approach repositions dementia to that of ‘seeing the person’, incorporating an intrinsic philosophy where knowledge of the unique individual through communication and interpersonal relationships is considered paramount (Fazio et al., 2018; Kitwood, 1997; Kitwood & Bredin, 1992; McGreevy, 2015).
I am convinced person-centred language fundamentally assists the progress of the person-centred approach to dementia. The use of respectful and sensitive language will circumvent reducing individuals with dementia to a chain of labels and symptoms (Alzheimer’s Society, 2017) and position the person at the centre of their care. Person-centred language has the ability to empower, convey respect and dignity, as well as enabling people to feel valued. Language should be culturally sensitive, be non-stigmatizing and focus on the abilities that people have in order to maintain feelings of self-worth (Alzheimer’s Society, 2018; Dementia Australia, 2018; Watts et al., 2018).
As a society, I believe we have a moral and ethical obligation to use and promote more supportive and non-offensive language based on the premise of respect. The Dementia Alliance International (DAI, 2014) Words about Words webinar raised a pivotal point suggesting that when people are afraid of dementia, they will find words that are negatively associated with it, and that change will not happen until people see people living with dementia as human beings.
As dementia activist, the late Richard Taylor noted, “It is true that I am fundamentally different from you. I am different in ways I can't express, and you can't fully perceive or understand. Our brains are different. But I am still a complete human being” (Taylor, 2010:2).
Incorporating a human rights-based approach within dementia discourse is therefore essential if people are to feel equal and valued within our society. People living with dementia deserve to be treated with respect and dignity, and their voice prioritised. I believe we are all equal and therefore should expect equal treatment.
The 2009 National Dementia Strategy identified “addressing stigma and raising public awareness about dementia” as one of its primary objectives (Department of Health, 2009). The Prime Minister’s Challenge on Dementia 2020 highlights the considerable progress that has been made in improving awareness and changing public attitudes to reduce stigma via the ‘Dementia Friends’ initiative (Department of Health 2015).
However, I do not believe this is enough and in reality, could these actions be seen as mere tokenism? With the continued use of dehumanizing language and the low representation of people living with dementia included in discussions around ‘dementia friendly projects’, Swaffer (2014) questions how communities can in fact be considered ‘dementia friendly’. In relation to policy and language, Michell (2019) suggests “sometimes we seem to be making headway but then in a blink of an eye it can seem like we’ve taken 10 steps back”.
I suggest we are clearly at a crossroads and need to fundamentally redress the perceptions held within society. Changing attitudes about dementia and the wellbeing of our fellow human beings is a collective responsibility and requires leadership. The media, medical profession, educators, large advocacy organizations and government all hold the power and ability to present a more balanced and accurate image and humane dialect about dementia.
In conclusion, let us return to the title of this piece: ‘sticks and stones may break my bones but WORDS’. I believe that words do have the power to hurt. Nevertheless, they also hold the ability to change. “As words change, so do perceptions, and as perceptions change, so do actions” (Fazio et al., 1999:5).
Do we therefore allow words without thought to penetrate our conscious and take root or do we question their validity, meaning and worth? Do we turn our cheek and consider this is not our problem? Perhaps we as individuals should choose to take a little ownership and responsibility for not just our own attitudes and language, but that of our society too. By using more respectful and humanistic language ourselves we will surely help pave the way to change.
Focus on human rights, dignity and care provision with the University of Hull Online's MSc in Dementia. Start our part-time course this September:
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