What's the impact of our language choices on people living with dementia? Diane, a student on our MSc in Dementia, discusses this issue.
Diane McCarthy has previously worked as a British Sign Language Interpreter and a University Academic Support Worker. More recently, she was a full-time carer for her mom, who had Dementia with Lewy Bodies, until she sadly passed away in October 2020.
Here, Diane discusses the use of language in dementia, an assignment she completed during her MSc with the University of Hull.
Sticks and stones
‘Sticks and stones may break my bones, but words will never hurt me.’ Well, whoever wrote that (Christian Recorder, 1862, apparently) probably didn’t have much contact with people living with dementia. Or maybe they did, but there was even less consideration given to the language used then than there is now.
How much do we actually think about the words we use and their potential impact on other people? Try to imagine three things you feel a little bit sensitive about yourself. For me; I’m short, overweight and I (used to) have ginger hair.
Over the period of my life, I’ve been referred to as ‘short-arse’, ’runt’,’ tank’ and, the always popular, ’Ginge’. I’ve mostly taken it in good spirit, judging it to have been said in jest, and occasionally given as good as I get when I’ve judged it to have been said otherwise!
Now imagine you’re a person living with dementia and you constantly hear words like ‘suffering’ ‘victim’ ‘hopeless’ ‘death sentence’ and other cheery little phrases. Are you likely to feel good and positive about yourself and your future? I would suggest probably not.
Daniel George (2010) even suggests a link between the language of warfare and attitudes towards dementia. This short video from the Culture Change Network of Georgia (the State, not the country, 2019), makes the point well:
The impact of language
I’ve been reflecting a lot over the past few weeks about my own use of language. My mom, who was diagnosed with dementia with Lewy Bodies in 2016, died last October. She had lived with my husband and I for the last two years of her life. I knew next to nothing about dementia beforehand and felt that I had to learn a lot, quickly. I did indeed learn a lot about medication, ‘sundowning’, remaining active, and so on.
Mom and I talked a lot, but it’s only now that I’m reflecting on how I spoke to her and the impact it may have had on her experience of living, and ultimately dying, with dementia.
An example of this would be when mom called me up to her bedroom to tell me that there was a man looking through her window. I took the ‘logical’ approach, explaining that no one could be looking through the window as we were on the first floor. I think I used the words ‘silly’ and ‘daft’. They seem like such innocent words, but now I try to look at that example from her point of view and I think I might have resented being belittled and spoken to like a child when I know what I saw.
I now realise (too late) that it was my responsibility to modify my language and communication skills and to be more aware of the impact of my language choices.
The words we use need to be encouraging, supportive, respectful, inclusive and non-judgmental and we should work towards removing the stigma and even shame too often attached to living with dementia (Banovic et al 2018, Swaffer 2014).
Blog posts are one of the varied ways students on our online MSc in Dementia are assessed:
People with dementia are the experts
When we think about the potential impact of language use on people living with dementia, there must be a case for arguing that the most appropriate consultants to approach are the people themselves. After all, who could know better than them?
We can empathise as much as we like, but they are the experts in their own dementia experience. Wendy Mitchell (2018) and Peter Berry (2020) both write and speak eloquently about their experiences of the impact of negative, and indeed positive, language. I would heartily recommend both of their books (and no, I’m not on commission).
The Dementia Action Alliance (2015) in its publication Living Fully with Dementia: Words Matter, powerfully highlights the effects of inappropriate language when communicating with people living with dementia, claiming that words used are “frequently derogatory and discriminatory” and that this “perpetuates the stigmas and misperceptions about the condition”.
When you read some of the negative language referred to in the paper, it’s impossible to disagree, and is therefore no surprise that people can develop feelings of segregation, wariness and a lack of trust. Who wouldn’t?
Avoiding negative language
This theme is further explored by Dementia Australia (2018) who, again, discuss the need to avoid discriminatory language. They also use more positive identifiers such as ‘respect’, ‘dignity’, ‘empowering’, for example and often refer to the individual living with dementia and the effects that the use of negative language can have on their quality of life.
So, my question is this: If there is such awareness of the impact of negative language and stereotypes on the lives of people living with dementia and their carers/supporters, why are we not seeing more appropriate language and actions used in our everyday practices?
The idea of using inclusive, thoughtful language which enables the person living with dementia to feel like they are actively involved in their own lives rather than just existing in a care dominated setting is not new. Kitwood (1997) in his discussion on positive person work used examples of care givers engaging with people rather than, in effect, giving them a set of instructions to follow. This involved a good degree of skill on the part of the care giver.
On a lighter note, we all know; 'It's not what you said, it's the way you said it' (Joey from Friends) and that; Sometimes... your words? They hurt' (Ross from Friends) but, certainly as far as dementia and language is concerned;
'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.'
This saying from Maya Angelou makes me think again about how I communicated with my mother. In the early days of her diagnosis, she experienced moments when she would feel ‘a bit muddled and forgetful’.
As time went by and the condition progressed, I would begin to recognise the tell-tale signs of what was to follow. She would become quiet and her face would reflect a look of deep concentration. Eventually, even though she would say she felt silly asking, she would say something like, ‘I know this sounds daft, but how many children have I got?’. I would tell her all her children’s names and ages and, for a while, she might nod her head, without looking totally convinced.
This happened a few times and eventually it became clear that she could not remember how many children she had, their names, or any details about them. I noticed that if I, or any of my siblings, tried to correct her, she could become quite agitated.
Communicating as equals
From then on, whenever the topic of family arose, I would ask her about her family. She would often refer to people I had never heard of, houses she hadn’t lived in, places she hadn’t been to.
But it didn’t matter, we would chat and joke and, sometimes even for a short while, she would again become the confident, engaging, involved mom of old. I firmly believe that this was partly because on those occasions we were communicating as equals, not as ‘dementia sufferer’ and ‘carer’. My regret is that I didn’t learn to communicate in this way sooner, as it benefited my mental wellbeing as well as my mom’s.
George (2010) touches on the importance of language choices for the care giver as well as the person living with dementia and draws our attention to the worthwhile contributions that ageing people can make to the community as a whole.
Surely, it’s not rocket science to realise that positive language leads to positive attitudes which can lead to positive outcomes and that negative language related to ageing will surely have the opposite effect? Or, following on from the rocket science scenario;
Age + Fear + Negative Language = Social Death + Dementia
Positive language + Positive Attitude = Life Affirmation + Positive Actions
So, we could then ask; is the language linked to ageing already so negative that introducing the prospect of dementia into the discussion can only increase the levels of fear, stigma and disassociation that already exist?
If this is the case, then should we look at the ‘bigger picture’ i.e. If we look to improve attitudes, language and responses to ageing itself, will we inevitably experience a positive development in the discourse.
Language can be so negative, so disempowering, that it can destroy a persons’ sense of their own being and how they are considered by society as a whole. The flip side to this is, understandably, that language can also encourage respect, dignity and recognition (Mitchell et al, 2013).
Dawn Brooker (2019), when writing in the ‘revisited’ version of Tom Kitwood’s seminal publication Dementia Revisited, seems to agree with Kitwood’s premise that a more positive attitude, and therefore by default, positive language can only help people living with dementia sustain their sense of self.
It could be said that Kitwood’s conclusions were not completely evidence-based as comparatively little research had been undertaken at that time. Brooker acknowledges that much more evidence-based research has been undertaken since the mid 1990’s.
Could there be a case for arguing that a good proportion of these studies were influenced, at least in part, by Kitwood’s theories in relation to adapting a more holistic approach to constructive communication?
I realise that I have used the words ‘positive’ and ‘negative’ many times when writing this piece. But when you consider the lexicons associated with these words,
positive – constructive, practical, useful, productive, helpful, worthwhile, beneficial, effective, optimistic, hopeful, confident etc.
negative – pessimistic, defeatist, gloomy, bleak, dismissive, uncooperative obstructive, cold, uninterested, unresponsive, damaging etc.
I think it helps to highlight the potential impact of our linguistic choices upon a person’s sense of themselves and their worth.
I wasn’t sure how to finish this blog. I’ve been part of the MSc in Dementia course for about three months now, and whilst writing this blog I’ve been looking back over the course content.
The topics we’ve covered so far have been challenging, fascinating, rewarding and wide-ranging. I came across this contribution I made to one of the discussions. I hope you don’t think its too self-indulgent of me, but it does quite nicely sum up my thoughts on the importance of language:
27 April 2021: I think language lies at the heart of the person-centred approach to dementia, and the past 11 weeks has highlighted how important it is for everyone, practitioner or carer, to be mindful of this. I know I mention this often, but when practitioners are sometimes allocated so little time with patients it may be difficult for them to focus on anything other than passing on the clinical information that has to be delivered.
We have heard/read many examples over the past weeks of people leaving a consultation feeling more worried and isolated than when they entered. The perceived lack of training and awareness of dementia issues and therefore the knowledge of the appropriate language at the GP level is something that has surprised me, but I do appreciate the pressure that GPs may be facing, particularly taking the effects of the pandemic into account.
As with many aspects of dementia, I have learned that language use is person-specific to the unique individual who is living with dementia. The individual's capabilities may range from someone like Peter Berry, with his eloquent use of visual language and analogies, to someone living a life of frustration because they simply cannot deliver the words that they are desperately trying to form in their consciousness.
I have also learned that language, and its effects on the people involved in the discourse, is something that we should not take for granted and I am more mindful now of my own interactions.
So, where are we now? It’s interesting to note that although Brooker (2019) acknowledges the advances in the understanding of the effects of dementia and the language associated with it in relation to people living with dementia and everyone involved with them, this is not necessarily being reflected in everyday practice.
I cannot deny that it feels a little sad to say that, as with many topics related to health and wellbeing, that more research, resources, education and training seem to be required. However, if we all consider every interaction we have, every day, with every person living with dementia and their care givers and supporters, it’s surely a good start. Could it really be as simple as saying we should THINK BEFORE WE SPEAK.
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You can view the references for this blog post here.