It's World Alzheimer's Month this September and we're publishing a series of blog posts by current students on the University of Hull Online's MSc in Dementia. As part of the module 'Dementia: Critical Starting Points', students were asked to write about language in dementia.
This post is by student Catherine Wood, a Clinical Lead for a national volunteer charity.
Our Words Matter: A Blog About Language In Dementia
I believe that words matter, but have we ever truly thought about the effect they have on people living with dementia and how they influence the way that someone handles the impact of the condition?
The language chosen to describe something leaves a big impression on how society views it, the words we choose to use have the ability to shape lives or destroy them. Words are so powerful and emotive that they can influence how a person copes with everyday life, how they think about themselves, how they are seen and accepted by society and how society responds to them or their community.
As a society we are good at putting a negative spin on the language we use and one of my greatest irritations is how we like to portray a doom and gloom approach to living. It seems accepted in today’s culture to apply a negative connotation or label to almost every community of people in order to distinguish them from other groups.
Labels are influential – whilst some can be empowering, many have a profound effect on how we view a person or community. Garand et al (2009) suggests the act of applying a label lumps everyone, from that group, together into the same indistinguishable cluster and, whether it has a positive focus or not, it removes all sense of individuality and self, detracting from the uniqueness and wholeness of that person, forcing us to think more about a person’s shortfalls or difficulties than their strengths and abilities (Dementia Australia 2018).
Fellow MSc in Dementia student Jenny Bennett's discusses how it's our collective responsibility to change attitudes towards dementia:
Finding the right words
Language used to describe people with dementia has historically been negative (Alzheimers Society of Canada 2017) and unhelpful. Often promoted by the media, it frequently portrays the image of a plague or epidemic of confused and pitiful people, which supports the so-called ‘tragedy’ discourse described by Reed et al (2007) as a fate worse than death.
The challenge, when talking about dementia, is to avoid any unsupportive words or labelling and get the language right in order to avoid misinterpretation and reduce stigma and discrimination (Bowman et al 2016, Swaffer 2014, Garand et al 2009).
Graham et al (2003) felt that words already attached to dementia, such as ‘senile’, ‘demented’ and ‘victim’ can, and often do, contribute to feelings of fear, hopelessness, and isolation. They are demeaning, harmful and, worse, can deter someone from seeking a diagnosis or from getting help and support.
Whitehouse (2008) implies that use of medicalised language such as ‘cognitive Impairment’ or ‘neurodegenerative’ is more factual and favoured by some medical professionals. Could this, perhaps, be as a way of hiding behind the implications that a dementia diagnosis brings?
However, if using the correct words of ‘dementia’ or ‘Alzheimer’s’ creates fear and anxiety, and asking if someone is ‘struggling with their memory’ generates the impression that the person is helpless, weak and unable to cope, then finding the right language to use seems to be an almost impossible predicament.
It seems that words used to describe someone with dementia divide opinion between people who live with the condition and those who don’t. Some people find certain descriptors empowering whilst others find them upsetting or damaging to self-esteem and confidence. The trouble with words is that, although they are our most influential form of communication, they can so easily be misconstrued.
It is easy for someone to say a word out of turn or to innocently use the wrong phrase, leading to what is said being mistaken for something else. So, when a friend recently said that a rather outgoing relative was “mad”, members of the family took offense. The thing is, that person had just been diagnosed with vascular dementia, and emotions were already sensitive. The person who said it hadn’t meant it in the way it was taken, but its intent became confused within the situation.
As human beings it’s our very nature to want to control how we view and describe a condition for ourselves but, for people with dementia, the words used often just increase the negative view already associated with the condition and reinforce the deeply entrenched stereotypical image that society shares of a person with dementia; as someone disempowered, confused, or mad.
In contrast, if we consider the terms associated with cancer we find them much more liberating and empowering. ‘Brave’, ‘fighter’, ‘survivor’, ‘inspiring’ create the impression of winning a war. These words create a sense of hope for a future lived well.
So why shouldn’t a similar encouraging and affirming language be used to describe dementia? If the use of adverse language and attitudes creates a negative response from both the person who has dementia and their carers (Earnshaw and Quinn, 2012; Patterson et al, 2018) so it should follow that use of positive language will create a more optimistic and confident response.
The case for positivity
The big question here is, should we be changing the language used to describe dementia into a more supportive one and will it make a difference? Using positive language feels compelling, it’s nicer to use and is less offensive, but does it actually describe the reality of the condition?
Take the frequently used term ‘suffering with dementia’. The Collins Dictionary (2019) defines the word ‘suffering’ as “…. a serious pain which somebody feels in their body or their mind”. People with early stage dementia often say that they are not living in pain physically or mentally, that they are coping well and have a good quality of life, so the use of the word suffering does not accurately describe their position.
If, instead, we say that a person is ‘living well with dementia’ it retains a sense of control over the injustice that overtly negative language brings. However, and somewhat controversially, Bartlett et al. (2017) describes how some people with dementia feel that removing the word suffering detracts from their day to day stresses and difficulties. In an effort to bring about a more positive outlook the reality of the daily struggle becomes misplaced.
So, is it in fact possible to live well with dementia, and is that the correct term to use to make that difference? I believe it is, and the words we use to describe how a person lives with dementia matter to how they manage. If we constantly use a negative language we will invariably contribute to the continuation of a judgemental attitude and discourse around dementia.
Whitehouse (2008) describes how in Japan, in 2005, the terminology to describe dementia was changed from ‘losing one’s reason’ and ‘absent of mind’ to a new term which, translated, means ‘awareness of cognitive symptoms’. This term hasn’t necessarily translated well into other cultures but, for Japanese people, a more positive approach to language used reduced the tendency for people with dementia to become isolated within their communities and allowed them to be seen as themselves, rather than the condition.
The Alzheimer’s Society (2014) reinforces that language is important when discussing dementia with a person, even before diagnosis. What is said and how it is communicated affects how someone will cope with the impact of their diagnosis and how they, and their loved ones, will view their life going forward. It can affect their whole identity.
People with dementia can live a rich, dignified and fulfilled life if the right language and approach is used at that early stage. If the conditions we have should not define the person we become (Young Dementia UK 2019), then the words used should not define our response.
If, as is evidenced by Thompson (2007) and the Alzheimer Society (2014) positive memories in someone with dementia have a bigger impact on their confidence and emotions than negatives ones, then positive language will have a greater effect on someone’s self-determination and wellbeing than a negative one.
In a care home I visit regularly, there is a poster on the wall which says “Invisibility doesn’t mean I am not here!” We all acknowledge that everyone is different and unique, so consequently people experience dementia in their own personal way. As caregivers, I believe we need to be able to see the person behind the condition, but people with dementia often say that they feel overlooked, invisible.
Similar to ‘suffering’, the use of the word ‘invisible’ has a disturbing undertone to it. Has the person with dementia really vanished in the eyes of the people around them? If so, it could determine the quality of care that people receive. Kitwood’s (1997) model of person-centered care relies on an understanding of the person over and above that of the condition, therefore the language that is used to discover that person is influential in developing their care.
A recent visit to a memory clinic demonstrated the importance of using affirming language when breaking the news of a dementia diagnosis. The person receiving the diagnosis, a gentleman in his 80s, arrived nervous and upset. The psychologist conducting the meeting started by saying, “Dementia is simply a word. It doesn’t describe or change who you are. You haven’t changed.” At the end of the meeting that gentleman walked out of the office confidently.
Speaking to him a few weeks later, he said that knowing dementia was just a word had made all the difference to his outlook on life. He went on to say that he felt his life still had purpose and hadn’t been taken away from him. What had been taken away was the fear associated with the word ‘dementia’.
Contrary to this experience, a doctor recently said to me that he felt he destroyed the lives of everyone he told they had dementia. On discussing the language he used, he said he told them they “have dementia and need to start making preparations for a time when they would no longer be able to look after themselves.” Maybe changing the focus to a more positive one could make a difference for this doctor and his patients.
Putting people at the forefront
Would things change if we actually listened to the opinions of people living day to day with dementia, and transformed our language to reflect words and phrases that are empowering for them? Many say that their voice has been taken away, they are not listened to and that their opinion no longer matters (Hare 2016).
One of my biggest frustrations is how we frequently don’t listen to people who, we assume, don’t have the ability to form a view. People with dementia have the same basic human right to an opinion and choice as everyone else. They need to be able to speak out about the things that are important to them. Increasing the engagement of people living with dementia, working in partnership with them and recognising their perspective helps in moving away from the unhelpful discourse to a supportive and encouraging one.
It is clear that things have to change but the biggest barrier to that change is the language itself. The words we choose to use matter. Using positive language when giving a diagnosis can make a difference at the beginning of someone’s dementia journey. It is the key to living well. Maintaining that positive language enhances feelings of inclusivity and preserves dignity, respect, well-being and self-worth. These are important factors to retain for people who live with dementia.
But we need to ensure we don’t lose the reality of dementia by the overuse of positive words and phrases. Developing a new language around a condition is not an easy task but in changing the words we use to describe dementia, we could change the way we think about it. We need to keep the conversation around dementia live within our local communities. The more we talk about it, the more likely the language of dementia will change to reflect a quality of life that is rich, fulfilled and supported. To do this we need to look past the diagnosis to discover the person, embrace their difficulties and respect their opinions.
We can only change something by practically demonstrating its value, but the associated ripple effect of change can be powerful. So let’s start by thinking how we would like to be described and talked about if we were the people living with dementia and change our words now to ones that matter.
Learn how to maintain the wellbeing and dignity of people living with dementia with the University of Hull Online's MSc in Dementia. You can start our part-time course this September:
You can read the full reference list here.