Hi all,
Here is a recent article that I have written for University. I appreciate that it is a bit of a long read, but this is a topic that is close to my heart.
There’s no wonder that there is a lot of stigma and negative language associated with Dementia. Historically, due to the symptoms associated with Dementia, those living with the condition were thought to have been possessed by the devil and were naturally subjected to hatred from society (Yang, Kim, Lee, & Young, 2016). Those living with Dementia were also forced to take part in exorcisms or were imprisoned for their ‘abnormal’ behaviours (Yang, Kim, Lee, & Young, 2016).
During the 14th and 15th century witch trials, those experiencing the symptoms of a mental health condition such as Dementia, schizophrenia, mania, paranoia and even the symptoms associated with epilepsy, fell victim to the witch hunt. This led to a large amount of innocent people being executed (Torack & Reisberg, 1983). Torack & Reisberg (1983) suggests that these incidents occurred due to a lack of understanding about mental health conditions and error.
Fast forward to the year of 1880, it is suggested that 509 people in England and Wales were admitted to an institution with ‘Senile Dementia’ (Andrews, 2017). ‘Senile?!’ – Not only is the term ‘senile’ hurtful, but it is also used incorrectly and has possibly contributed to a lot of the negative language associated with Dementia (Legg, 2019). This type of language is discriminatory and is not in line with the inclusive approach we should be working towards today.
As previously discussed, during the 18th and 19th Century, those living with Dementia became institutionalised due to the unexplained behaviours associated with the condition (Andrews, 2017). The institutions in question were known as ‘Lunatic Asylums’ (Boyer & Schmidle, 2009). The word ‘lunatic’ is inappropriate and, like the word senile, has contributed significantly to the stigma associated with Dementia.
Thankfully, in the 19th century, attitudes towards those living with a mental health condition started to change. Those supporting people living with a mental health condition provided more appropriate and compassionate care within asylums (Mander, 2020). In the 20th Century, asylums started to close one by one and care for those living with a mental health condition was offered within the community (Mander, 2020). This changed the perception of society as those living with a mental health condition were integrated into society and were no longer locked behind closed doors (Mander, 2020).
Sadly, there are still many examples of how a lack of understanding of Dementia and using negative language towards those living with the condition has shaped the public’s perception on Dementia. This has contributed to the stigma that is still associated with the condition today. Despite the shift in attitudes, the social stigma associated with Dementia is still recognised as a worldwide problem. It has led to rejection, discrimination, and exclusion from society (Rewerska-Jusko & Rejdak, 2020).
Another potential cause for the negative stigma attached to Dementia is the media. Media is one of the main sources of information accessed by people today. It has a huge role in reflecting and shaping people’s perception and attitudes towards those living with Dementia (Benbow & Jolley, 2012). Studies have been carried out in order to examine how the media portrays people living with Dementia or the condition itself, the studies determined that the media predominantly portrays Dementia in a negative light which reinforces the stigma of Dementia (Mukadam & Livingston, 2012). Until there are significant changes in the way Dementia is portrayed within the media, negative stereotypes and stigma are likely to remain.
Existing studies have highlighted the fact that the stigma against people living with Dementia and their families negatively impacts their lives (Nguyen & Li, 2020). Furthermore, stigma often delays help seeking behaviours and creates barriers for those living with Dementia and their families to reach out to health professionals for care and support (Nguyen & Li, 2020).This could have a detrimental effect on a person’s wellbeing, especially as early diagnosis is so beneficial to the person living with a cognitive impairment and their families. Leifer (2003) supports this statement within a study by stating that early interventions are key as the person living with Dementia’s level of cognitive function can be preserved for a longer period (Leifer, 2003).
Further to this, a recent study suggested that, due to the negative connotations relating to the language associated with Dementia, those living with the condition tended to agree with the public’s belief that they are incompetent and unable to participate in any social events anymore. This is called self-stigmatisation (Nguyen & Li, 2020). This self-stigmatisation can have a negative impact on a person living with Dementia’s self-esteem and sometimes results in social isolation (Nguyen & Li, 2020).
For a person to gain a timely diagnosis, the appropriate care interventions and for a better quality of life, it is important that we work on reducing the stigma associated with Dementia (Swaffer, 2014). So far, I have discussed some of the possible explanations as to why there is a lot of negative language associated with Dementia. I have also briefly explained what impact this has on a person living with Dementia and their families. I am now going to discuss how the use of positive language, when discussing Dementia, could change the public’s perception and reduce some of the fear that people living with the condition experience.
As you have probably established from reading this article so far, language is a powerful tool. The words in which we use, strongly influence how those around us view people and how those living with Dementia view themselves or interact with others on a social basis (Swaffer, 2014). It is essential that we use positive language when discussing Dementia, to enable those living with the condition to feel empowered, confident and to encourage their ability to seek the support that they require (Milne A. , 2010).
The fact is that people can live well with Dementia. The language associated with the condition needs to be clear, jargon-free, positive, normal, inclusive, and non-judgemental which centres on the person themselves and not the condition itself or the social care system (Swaffer, 2014).
The word ‘suffer’ is commonly used when discussing a person who is living with Dementia, while some do suffer, many people do not suffer and find the word ‘suffer’ offensive (Milne A. , 2010). It is no longer appropriate for this language to be the norm. Once again, it is misleading, fearmongering, and feeds into existing stigma. An article was published by the National Health Service in 2021 which supported this by explaining that just because a person is diagnosed with Dementia, it does not mean that they are a sufferer or a victim. The National Health Service (2021) further highlights the fact that these negative words contribute negatively to that person’s life and the lives of their families and carers (National Health Service, 2021). Evidence suggests that even those living with moderate to severe Dementia can still enjoy life although more research about this would be beneficial as it is widely assumed that those with severe Dementia have no quality of life (Livingstone, Cooper, Woods, Milne, & Katona, 2008).
Due to the negative language associated with Dementia and the impact that this has on a person and their family’s life, a UK Dementia strategy called ‘Living Well with Dementia’ emerged. This was initiated through consulting with people living with Dementia and their family members. They wanted to share with others the view that, although a Dementia diagnosis can be devasting for some families, with the right support, the person living with Dementia can still live a fulfilled life (Housing , 2009). The strategy is designed to tackle the stigma associated with Dementia and to meet the needs of all, despite the person’s age, ethnicity or diagnosis and is focused on improving Dementia awareness amongst the public, earlier diagnosis, and a higher quality of care (Quinn, et al., 2021). The concept of living well is now embedded into the live well pathway for Dementia and developed by the National Health Service (Quinn, et al., 2021).
This shift in enabling those living with Dementia to live full filled lives has been developed by those living with the condition themselves and their families/caregivers (Quinn, et al., 2021). This is a positive move forward because it means that those living with the condition are now speaking out about their experiences and creating narratives about what it is like to live with Dementia, and are therefore, increasing public awareness about the condition (Clare, et al., 2014). Moreover, these true stories can counteract the negative perception of Dementia developed by the media, by contributing positively to how the public perceives the condition (Martyr, et al., 2018).
As the number of people being diagnosed with Dementia is increasing within the UK, it is important that we challenge the stigma associated with the condition (Milne A. , 2010). It is evidenced that those living with Dementia are subjected to a combined jeopardy of age discrimination and stigma, both issues need to be addressed and only we can positively make a difference (Milne A. , 2010). This article was created with the intention of to raising awareness around how our own language can shape other people’s perceptions on Dementia and reduce stigma or self-stigmatisation. It is important to be mindful about what language we use when discussing Dementia and the language we use when speak directly to the person living with Dementia.
As Dementia is something that will touch most our lives within the future, it is within our interests and those of future generations to start tackling the stigma associated with the condition now and contribute to improving the lives of those living with Dementia and the lives of their families and caregivers.
References
Andrews, E.S. (2017). Institutionalising senile Dementia in the 19th-century Britain. Sociology of Health and Illness, pp.244–257.
Benbow, S.M. and Jolley, D. (2012). Dementia: Stigma and its effects.Neurodegenerative Disease Management, pp.165–172.
Boyer , G., & Schmidle, T. (2009). Poverty among the elderly in late Victorian England. The Economic History Review, pp.249-78.
Clare, L., Nelis, S. M., Quinn, C., Martyr, A., Henderson, C., Hindle, J. V.,Morris, R. (2014). Improving the experience of those living with Dementia and enhance active life-living well with Dementia: study protocol for the ideal study. Health and Quality Life Outcomes, pp. 1-5.
Dean, E. (2011). Stigma and Dementia Care. Nursing Older People, pp.12.
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Leifer, B. P. (2003). Early Diagnosis of Alzheimer’s Disease: Clinical and Economic Benefits. Supplement, pp.281-288.
Livingstone, G., Cooper, C., Woods, J., Milne, A., & Katona, C. (2008). Successful aging in adversity – the LASER longitudinal study. Journal of Neurology, pp.641-645.
Mander, J. (2020, July 26). A History of Mental Asylums. Available at: https://beyondthepoint.co.uk/a-history-of-mental-asylums/ accessed on the 24th April 2024
Martyr, A., Nelis, S., Quinn, C., Wu, Y., Lamont, R. A., Henderson, C., Morris, R. G. (2018). Living well with Dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction of people living with Dementia. Psychological Medicine, pp.2130-2139.
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Mukadam, N., & Livingston, G. (2012). Reducing the stigma associated with Dementia : Approaches and Goals. Aging Health, pp.377-386.
National Health Service. (2021, May 18). Why language matters in dementia care. Available at: https://northmid.nhs.uk acessed on 10th April 2024.
Nguyen, T., & Li, X. (2020). Understanding public-stigma and self-stigma: A systematic review of the global literature. Dementia, pp.148-181.
Quinn, C., Pickett, J. A., Litherland, R., Morris, R. G., Martyr, A., & Clare, L. (2021). Living well with Dementia: what is possible and how to promote it . International Journal of Geriatric Psychiatry.
Rewerska-Jusko, M., & Rejdak, K. (2020). Social Stigma of People with Dementia. J Alzheimers Dis., pp.1339-1343.
Swaffer, K. (2014). Dementia: Stigma, Language and Dementia Friendly. Dementia, pp.709-716.
Torack, R., & Reisberg, B. (1983). Alzheimer’s Disease: The Standard Reference. New York: Free Press.
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