Dementia friendly language: Stigma and Normality.
A little while ago we had a diversealz chat about language and dementia, which was triggered by our host having heard about a conversation where people living with dementia were describe as not “normal”. From a care worker especially, this is loaded, unhelpful, patronising and certainly makes me and others question their role, and suitability for care. We would expect more from professionals who should be measured. But from anyone we all agreed this term is unacceptable. The reason I think we all found this so offensive was summed up by one chatter “”not normal” implies not being accepted as part of “normal” society”.
One lady we spoke to has experienced the word “gormless” when a manager was actually trying to convey “disorientation”. This itself brings up problems. We all struggle to find the right word, but there are so many “trigger” words that in themselves can be construed as offensive. So what then? We mustn’t be scared to attempt conversations for fear of insulting, but we must think about words that may offend the audience and how to avoid “having” to use them. The lady who heard this told us that a majority of the time the most harm/offence comes from when trying to describe an individual’s behaviour to another.
These examples show us that ignorance still exists, even in those who should know better. And the way to solve this? All health care professionals to have training in dementia, regardless of the setting they work in. (Personally after my and nan’s experiences with the red bank I would suggest that anybody who has any sort of contact with the public should be receiving some form of training in dementia awareness. In a way that makes it accessible, and draws out the empathy of people.
Of course “normal” is a very subjective term and is a loaded word. What does it even mean? The Oxford Dictionary definition of normal can be found below. Stigma however unintentional exists (which is exactly why we are talking so much about it). People have a narrow frame of reference for normal, and many awful statements have been heard. Of course with the development of the internet we are more able to broaden these frames of references, but with tight knit friendship groups and living within similar social circles, many of us never experience anything that may be considered “out of norm”. We are all individuals, so who gets to decide what the benchmark for “normal” is? Again, different socio-economic factors influence what each of us experience as “norms” throughout our lives so what one of us may think is “normal, another will think is “abnormal”.
Can we be/are we too sensitive about the words we use to describe people with dementia? There is that danger, and this can impact on how people understand the information. This draws into inclusion, if we wish to be inclusive then the language used is exceedingly important, it can shape our perception and understanding. And yes there are times when emotions get the better of us, but is this an excuse for using language that could/does offend?
Language and how it is used really impacts on our understanding, would we prefer our doctors gave us a hopeful but unlikely outcome? Or gave us all the facts? We surely want an outcome where we understand diagnosis, treatments. We need to be more realistic, rather than optimistic in order to ensure people understand the information being given to them, as one user put “take rose tinted glasses off”.
But of course there is a line, as there always is, that should not be crossed and I think this line is a personal thing. I do not get offended at things many others do, but take a slight at others. We need to understand who we are communicating with and the sort of communication and language they prefer. Language can also be used to reinforce certain norms, so the way you describe someone reflects on them. In the same way the way we use language can change norms.
It was also mentioned that the words and language people use can give great insight into their character and beliefs, although of course this can change. The more prejudice or stigma we can break down, the better for society, and the best way to do this is to use positive language. As language and stigma can be closely linked. How can we tackle this? Pretty much a unanimous answer here. Education. To educate about what dementia is, what it’s like to live with it, how to improve life with it. We need to raise awareness and challenge stigma. This has happened before, for example with the word “spastic”. Spastics Society became Scope as spastic fell out of use. Language can be a massive barrier for those with dementia, so again we need to look at the individual and their preferences.
Signing was also mentioned here, we must not neglect the extra needs of individuals in order to use language they can communicate with. We may need to also tailor information to an individual, slang terms, casual as opposed to formal language? Some people with dementia may not be able to communicate back, but we have to remember that this does not mean they cannot hear what we say. Word choice should always be at the front of our minds. They’re people, just like us, and words hurt, so we must treat them as people. As we would wish to be treated. Is there such a thing as dementia friendly language? This is a harder question to answer, as once again we are all individuals with our own preferences, dementia just strengthens the need for individualistic language/communication. I would say as a general rule though we should be aiming for simpler shorter sentences, not too much technical terminology, and lots of spaces for the individual to chip in, or ask questions. We also discussed the possibility of finding a new global word, “dementia” itself has many negative connotations – demented. And with so many languages using a word that came from a Latin word meaning “without mind” would it be better for the creation of a new perception with a new word?
In summary I think we can all agree that getting to know the person/people you are communicating with, the situation, emotions can all influence our language. But being able to interpret this so as to have a positive communication experience is invaluable.
Some handy links on the subject of the chat are here;
Beth Britton’s blog post on language and dementia: http://d4dementia.blogspot.co.uk/2013/03/trouble-with-language.html
Dementia and language via Youtube, looks at stages people living with Alzheimer’s go through. http://www.youtube.com/watch?v=gnmE-egP9d8
Guardian article: On mental health, it’s wise to use your words carefully http://www.theguardian.com/society/2011/sep/06/mental-health-choose-your-words-carefully
Interesting post by Time To Change, Director Sue Baker: The language we use to talk about mental health http://www.time-to-change.org.uk/blog/mental-health-language
Read the first sentence http://en.wikipedia.org/wiki/Dementia learn something new every day!
Oxford dictionary definition of normal: http://oxforddictionaries.com/definition/english/normal