By Lina Pazou, Care Manager
“When people say ‘dementia’ or ‘Alzheimer’s,’ everybody thinks you’re going to die”. This is what a study participant with early-stage dementia said, and with just a phrase he described the way dementia is conceptualised and socially constructed (Reed et al., 2017: 695). It is a reminder of the existing stigma that surrounds people living with dementia. Why am I saying this? Because what we think and how we feel about something will also affect the way we talk about or describe it (Ogden, 1956). Consequently, it will affect the way people feel and think of it.
So, if we believe that dementia is something horrible which means the end of life for a person who experiences it, then that is how we will express our feelings. “Demented, sufferers, empty shells, lost souls, living death, victims, not all there, gone, non-persons’’, are some of the words and phrases used when talking about dementia or the people who are living with it (George,2010; Swaffer, 2014). We often come across this rhetoric in the media and in informal talks between us or even in official literature, in literature describing dementia itself and in research (George, 2010; Swaffer, 2014).
When we use this discourse, how do you think the individuals or the people responsible for their care would feel? Would they feel better about themselves? Would it affect their psychology or their physical health? Does it affect the way we act towards them? Does it help?
Negative Words Create a Distorted View of Dementia:
Working with people diagnosed with dementia and knowing that there are over 200 dementia types, one soon realises that everyone is different and rarely you will find two individuals experiencing dementia in the same way (Alzheimer’s society, 2018). So, using identical words and phrases to describe the condition of millions of people who live with dementia cannot be right. People with dementia are not necessarily helpless, they do have abilities. They are not all incapable of making decisions, actually most of them are capable of making plenty of decisions about their everyday life (Poppe et al., 2020; Alzheimer’s society, 2018). They have not necessarily lost their memory, they are not suffering, they feel well in themselves (Gerard, 2019; Fire Films, 2018). They have not lost their personality or even their personhood (Rankin et al., 2005; Brooker & Kitwood, 2019). It is just a different way they experience their existence and express themselves now, so using this stigmatising language will only add more stress and reduce their self-esteem (George,2010; Swaffer, 2014).
Using negative and warfare words is creating a negative perception of dementia which indicates that people cannot live well while experiencing it, that they lose themselves, and are incapable of conversation or making decisions but this is not the true picture of dementia (George, 2010; Reed et al., 2017). People can live well with dementia and this depends on the quality of relationships they maintain, on the way they feel about themselves, which by the way is well connected with the way other people see them, and their general physical health (Domínguez-Rué, 2018; Clarke et al., 2020). Since the language used is mirroring the circumstances existing in a society at a certain period of time (Ogden, 1956), one could conclude that the way this society is looking at people with dementia today, is quite a negative one.
It is not just the verbal language we need to make more positive and inclusive but also the non-verbal language and our general approach when talking with or about people with dementia (Hubbard et al., 2002). Supporting persons who experience dementia for many years I have noticed that when someone wants to know something about the person, they will address the question mostly looking at me instead of the individual the question is about. And this is happening although the person is there, present, having capacity, able to give answers about things that are concerning their own life and condition.
When people with dementia are on a wheelchair this is even more intense. As if they do not exist. It is presumed they are not capable of making conversation or giving answers about themselves. My usual response is “I think you would like to ask Mrs B. this question” while looking at Mrs B. smiling at the same time and gently moving the conversation to the individual. Do people know what to do when this is happening? Usually, caregivers go on answering on behalf of the individual (Chang et al., 2020) because they think they are helping them. But “the road to hell is paved with good intentions” and this is what Kitwood (2019) described as “malignant behaviour”, which means you have good intentions, but that is not necessarily what is best for the person with dementia. Our verbal and non-verbal language echoes peoples’ thoughts about the ones who experience dementia and about dementia itself.
In Greek, which is my native language, dementia is described with the word “άνοια” ἀ- (a-, “not”) + νούς (nous, “mind”), which means “no brain, no mind”. Although somehow scientifically accurate as a description since dementia is caused mostly by neurodegeneration of the brain, the word itself instead of indicating a physiological ageing procedure, creates a stigma and socially constructs dementia as something horrible and the people who experience it as less than others.
Studying about the stigma, the way language can affect us on how we feel about someone and the way we engage with them, inspired me to try and find a different word or phrase to use instead of the word ‘άνοια’. I was also someone who thought of dementia as something that would exclude well-being from one’s life once it appeared but studying about it and supporting people with dementia, helped me realise I was wrong. Education and awareness about dementia and aging itself can help reduce the stigma and fear built around them not only for the individuals but also for the people who support them (Mitchell et al., 2013). It is not easy to change the words we have been using all our lives to describe something, but it is possible. It is not even easy to write about discrimination due to language, without using discriminatory language.
Negative Language and Self-fulfilling prophecies:
Negative language has a detrimental impact on the physical health of older persons (Chang et al., 2020). People with dementia besides their stress to deal with new circumstances that appeared in their lives, they several times face discriminations and prejudice due to social class, gender identity, race and age which occur via other people’s behaviour and language which leads to health deterioration (Milne, 2010; Srivastava, 2019).
Ageism and discrimination for people with dementia apply not only in everyday life but also in the public sector and research (Chang et al., 2020; Swaffer, 2014). Several types of dementia are thought to be just normal part of aging so, discrimination and prejudice based on age has a physical and emotional impact also in the lives of people with dementia (Milne, 2010).
The negative and tragedy discourse around dementia is reflected directly in all aspects of the individual’s life and the life of their family or carers (Gerrard, 2019). It will affect the health professionals, the government, the law makers (Nedlund & Nordh, 2015), the researchers (Young et al., 2019), the community in general (Royal Society for public Health, 2018; Hansen et al., 2016) and the person’s well- being and resilience during their dementia journey (Buggins et al., 2020). This kind of discourse will result in the self-sabotage of the person and the family who will believe they do not deserve or that they are not able to live a better life or achieve life goals (Heinrichsmeier, 2018; Romaiolli & Contrarello, 2019).
Epictetus, the Greek stoic philosopher stated that “Men are disturbed, not by things, but by the principles and notions which they form concerning things” (Enchiridion, 110 A.D.). Imagine if one is diagnosed with dementia and they grew up believing that dementia means death or a life without meaning because this is what they hear from others, read in social media, see it on TV shows and even read about it in research.
There is a high chance that they will self-fulfil this prophecy (Merton, 1948). The person with dementia, their family and or the people who support their care will possibly live as expected because as the Thomas theorem explains, “if men define situations as real then they are real in their consequences” (Merton, 1995). We need to remove this terror mentality that is built around dementia so that the individuals will be able to regain their self-esteem and basic human rights which are violated because of the discrimination imposed upon them.
Communicating the right message:
Communication is essential in everybody’s life and it is proven that good communication, verbal and written, leads to better outcomes in health care (Dagsvold et al., 2015; Srivastava, 2019). In everyday activities and health care settings we should start conversing in a more inclusive and person-centred way so that we achieve a healthier environment. Over the past years individuals who experience dementia share their stories in social media and this is helping all of us to have a better understanding (Talbot et al., 2020).
The phrase “Nothing about us without us” used by people with dementia in social media and lectures is a nice guide which shows that they want and deserve to be included in everything concerning them (Swaffer, 2014; Talbot et al., 2020). A few suggestions would be:
Ask the individual how they would prefer to talk about dementia. Which wording is best for them, their family or any other people who support their care? They are the experts.
“People living with dementia” or “persons experiencing dementia” instead of the word “sufferers”, “patients”, “victims” or any other phrase that is part of a tragedy disclosure is a more positive and thoughtful phrasing.
- Emphasize the abilities rather than the disabilities. For example, “The individual maintains the long-term memory” rather than “The individual lost their short-term memory”.
- Researchers should listen to the voices of people with dementia when they say their language is often stigmatizing and start appreciating their colleagues’ findings which prove that this discourse is damaging to the individual’s physical and mental health (Hansen et al., 2016; Chang et al., 2020).
- Educate the individuals and the people who support their care to improve their self-esteem and reduce their stress. This will probably be the best way to stop them from self-fulfilling a negative theory of life (José et al., 2019).
- Create social media and TV spots to educate the public and build familiarity with dementia and its true nature (Oliver, 2020).
- Educate the children by bringing them in touch with care home settings and with people with dementia.
- Legislation to reduce discrimination and protect the human rights of people with dementia and furthermore review every person’s condition separately.
Conclusive Thoughts:
It is even hard to talk about the impact discriminatory language has on people with dementia, without using discriminatory words. The way we talk and the words we use to communicate affect the world around us (Ogden, 1956; George, 2010; Mitchell et al., 2013). There are words connected in our minds with certain conditions, aspects of life or a person we know. And sometimes vice versa. We often connect a condition or a person with a word in our minds.
Words can empower people with dementia to live well and be better represented, as well as disempower them, and make them lose their dignity or self-respect (Swaffer, 2014; Srivastava, 2019). People who experience dementia have already enough to worry about due to the existing perceptions and stigma (Milne, 2010) so, if maintaining equality in a society is desirable, we have an ethical responsibility to create a positive and inclusive environment for people with dementia (Mitchell et al., 2013).
Dementia is a condition that many of us will encounter with one way or another, so we need to create a society which is dementia friendly, capable, and positive (Lin & Lewis, 2014). People with dementia can live well and this should be communicated accordingly. We should identify their abilities and focus on them (Reed et al., 2017). When the rhetoric around dementia alters, the way people with dementia are treated and their self-esteem will change, and they will be able to lead a meaningful, respected, and good life. I will use the Butterfly model as an epilogue because it changed me and the way I felt about dementia and living well with it.
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