Diagnosed with vs suffering from dementia

Dementia Expert Chris Roberts UKThere has been a lot of noise on social media and other places about the use of the word ‘sufferer’ in the last few weeks when referring to a person with dementia. Last week, I received a reply by someone willing to change the term  to a person diagnosed with dementia, with acceptance and grace. Such a welcome change from most users of this offensive term, respectful and gracious. Interestingly, the people are the most impolite about it, and who refuse to think we actually have no right to be offended by it, when they are not, are journalists and professionals. Not all, for sure, but many. And also family carers, who my husband and I believe are the ones more likely to be suffering than those of us diagnosed with dementia.

So, does ‘I am suffering from… dementia, arthritis, cancer, MS etc sound more negative and less empowering than, ‘I am diagnosed with…’? Whilst the term suffering may technically be ‘correct’, I cannot see how anyone could not see it is not negative and disempowering. The Dementia Experts, that is, the people living with dementia, have the right to say what is offensive, and what is appropriate. At Dementia Alliance International, an advocacy and support group of, by and for people with dementia, we are gathering members, and building our resources, which will eventually include language guidelines. We are living as well as we possibly can with dementia, and want to change the negative disempowering terminology.

I also find it incredible so many believe they have a ‘right’ to use it publicly to refer to us, even when we are offended by it, and when organisations like Alzheimer’s Australia, Alzheimer’s Ireland, Alzheimer’s Canada and other international organisations have stated in their language guidelines it is an inappropriate word to use since as far back as 2008. As with every topic, there are language guidelines for the media, and I see absolutely no reason why they should be allowed to ignore the guidelines for dementia. Indigenous Australians do not accept being called Abbos or other offensive and racist terms, and people with dementia have the same right to stand up and say we don’t like certain words or terms.

Hence I will continue to hold them to account whenever I see us being referred to as sufferers, victims or other offensive words. Maybe I’m being irrational, maybe it is part of the D-factor, maybe I simply have a right to stand up for what I believe to be offensive and disempowering… who really knows?! No-one calls people with physical or intellectual disAbilities retarded or retards any more, and there would be public outrage at the offensiveness of it if they did. Recently one journalist, Rose George was not only offensive but absolute in her right to refer to people with dementia as sufferers, and then not willing to engage further regarding the fact this word has been listed as inappropriate for years; not only by us, but by the organisation advocating for us in their publicly available guidelines. Such is life, and hopefully my letter to the chief editor of the paper she writes for might offer her another way.

We all use terms and words about others as we wish privately, but when it is in a public forum of any kind, we all need to consider our actions, and how they might affect others. Professionals including journalists, bloggers, and others with a public audience of any kind I believe should be willing to adhere to media guidelines… Even universities teaching dementia courses need to become more aware of the offensive language they are using, and following my Master’s of Science in Dementia Care degree, I hope to make some positive change in that area. As you know, this is one of my ‘hot topics’ and hopefully… is my only rant for this week!

 

43 thoughts on “Diagnosed with vs suffering from dementia

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    • This is an interesting article, which I agree wih in many ways, however I still support my position; the analogy I regularly use is that we don’t call people ‘retards’ or ‘retarded’ (or Spastics as you have mentioned), even though those of us with disAbilities are ‘technically’ retarded. If a group of people find certain terms offensive, especially a marginalised and stigmatised group, changing language can not only re-empower them, it has the potential to change the way others view them.

  4. Loads of great points made Kate, and you know I share your very eloquently described views on language, and have indeed blogged about some of the many language issues around dementia, most notably the use of ‘sufferers’ ‘senile’ ‘toileting’ and other terms I strongly object to.

    Last year I was compelled to write to a newspaper editor regarding language used by a columnist in an article that was published on 13 April 2013 in The Times (UK). It used the words “dementia sufferers” and “gaga incontinents”. I never had a reply. That date also happens to by my dad’s birthday, so you can imagine how particularly insensitive I found it. There was a storm on twitter at the time, but the columnist in question defended her article and as far as I know it was never changed (the paper is subscription only online, so I can’t check).

    Much love & keep up your awesome blogging, campaigning & advocating xx

    • Columnists have a habit of defending their right to offend others, and refusing to use international language guidelines, and their newspapers never respond! Such is their arrogance, I suspect… Keep up your awesome blogging too, and our campaigning and advocating together for a better way. xox

  5. Kate – I remembered another reason why we don’t “suffer dementia” …… because you usually use the word “suffer” when talking about the actual medical symptom …… eg. suffer chronic pain. suffer incontinence ….. etc. You don’t usual suffer a disease.

    that’s a technical way to look at it …….

  6. I can truely say life is never dull.It makes sure it lets you know you are alive,ain’t that grand..Anyone of us can have a stroke at any age.Anyone of us can be diagnosed with cancer , struggle with mental illness or Dementia.We are all human beings that have a purpose in life as much as anyone else.We are all equals in Gods eyes.I beleive life is a big learning school.I have learnt some of my greatest lessons through my communication with the people that are labelled or rejected from this imperfect world..Exceptance and love I beleive is the key to a happy life on Earth Sometimes difficult to do and find.I have been called many names,ridiculed and bullied because of my differences,just like Jesus went through and many of us in our life travels.But without it I may never have learnt to except myself or others.All jugdement falls away and we just except what is.Statements people make is out of fear or lacking knowledge.Correcting someone if they affend you or someone you care about is a positive action.So long as we do this with respect and love.Our bodies grow old our brains grow old.Who we are never grows old.Great to see people expressing their feelings and concerns.Reading others comments on dementia is part of our learning to understanding better.I personally prefer the word “struggle”what is your opinion on that word.In my nursing role over the past 13 years,I have had some of the best shifts visiting folk with dementia.I except them and they except me.No pushing and shoving to make each other be a certain way.Laughter best medicine.The animal kingdom is good example too..Mostly body language and touching,very little verbal language.Not saying we go around touching one another.
    I feel if human beings use the body language more to read each other.There may be less conflicts.Great blog ,love reading others ideas and stories.kind regards Teena Rees ccw and many other roles in life.Fitzroy area.

    • Hi Teena, thanks for joining the conversation here. I read the other day that body language makes up 55% of communication, so is definitely very important! It sounds like you are a wonderful nurse, so keep upi the great work. xx

  7. Good subject kate ……. lots of things you can say, but you can’t really use some other diseases with it because very often the other diseases are only lasting maximum of 12 months. eg, most cancers. eg. “I’m a cancer patient” is used but when you’re finished treatment then you’re not a patient anymore. People with MS just say “I’ve got MS” ……… well, that’s what I would have thought. Or “people with MS”.

    But using the word “suffering” isn’t normal at all ……. I’ve never heard anybody say it and I’d HATE to hear anybody use it.

    You could argue that dementia is a diagnosis only so we shouldn’t be characterised by the disease (eg. suffering) and should maybe only be referred to as patients …..

    just some ideas ………

  8. Thanks again Kate for another nsightful post. I am constantly disappointed by the negative language used, particularly in the press. I’m also saddened by the negative images used even when other far more positive pictures were available. I understand that the press believe the negative words & images are more likely to make money but surely constantly ignoring what people are saying only shows ignorance? Keep writing Kate, your posts are so helpful to so many. Agnes is right, this is an international issue.

    • Hi Clare, thanks for your comments and support, and yes, it is an international issue, which is part of the reason I keep banging on about it! I’ll keep writing, and hope you do too. x

  9. Reblogged this on Chrys Muirhead and commented:
    @KateSwaffer
    “The Dementia Experts, that is, the people living with dementia, have the right to say what is offensive, and what is appropriate. At Dementia Alliance International, an advocacy and support group of, by and for people with dementia, we are gathering members, and building our resources, which will eventually include language guidelines. We are living as well as we possibly can with dementia, and want to change the negative disempowering terminology.”

  10. Pingback: Living well with dementia: Happy by Pharrell Williams | Living well with dementia

  11. Thank you for your blog. I think language and the ideas and emotions that it represents is a very important subject. I think it has a big influence on our thoughts and in turn our actions. I remember hearing a care manager laughing that she could no longer use the word ‘refused’, having instead to use ‘she/he chose not to’ and stating that she saw no difference. Perhaps her using this language will have an eventual influence on others around her and lead her to a deeper understanding. However, I feel the training is lacking if someone goes away being unsure of the difference and why one phrase is regarded as more appropriate than the other. This seems to be the case in so many areas of society when we try to deal with difference. I feel all training that tries to deal with difference needs to begin by focusing on empathic understanding. Without that, anything that comes later may risk being seen simply as cultural labelling based on external influences and will take a very long time to change behaviours.

    • Thanks for your comments Alex, and for joining the conversation here. Also, you have a picture of my favourite breed of cat, and your profile pic looks like my cat Star who died last year. They are a beautiful breed. Regarding language and how important it is, I agree with everything you ahve said, and this blog is just one of many I have written about the language being used in the dementia sector. People with dementia have been advocating for many yearsw, long before I was diagnosed, with little impact on others, but now, partly due to social media making it easier to track others, we are hoping to impact change. It is hard to see any change after one year, but often a palce is unrecognisable after ten years… it is taking us a bit longer!

      • Hi Kate, it’s @BaobabTherapy, I imagine you have probably seen other photos of Anitchka 🙂 Yes a beautiful breed, I think! I’m very sorry about Star. Is Boris a relative of Star?

      • Oh thanks for letting me know your twitter name… at least we sort of know each other!! Still sad about my darling Star, but Boris is not related, but just as wonderful! Love Anitchka.. gorgeous. Take care 🙂

  12. I believe the media use negative terms because negative alarmist stories “sell”. (profit motive) There are many hurdles to leap before “living well with a diagnosis of dementia” permeates the public perception. Celebrities (with the exception of Terry Prachett) tend to emphasise the pain of losing the person they used to know, so they omit any reference to “living well” while support groups on the internet deal almost entirely with the negative aspects of dementia. Add to this, the number of novels that portray dementia as a nightmare and there is a long way to go before a positive light is thrown on the subject. At a conference (Medical Humanities in Durham) I was challenged after a reading from my own work in progress: “Why does nobody write stories which show people living happily with dementia?” On reflection after the event, I think it is easier to write sad endings ( Autthor motive:making readers engage emotionally) and that my writing was based on my own pain at losing the support from my sister because I missed her humour, advice and understanding. (therapy motive)

    To summarise: to date the media, support groups and fiction have told the story of dementia as an entirely negative one. Kate Allan (Stirling University?) is doing a PhD on how we can learn about the joy of living in the present and the joy of “flow” from people with dementia. Perhaps her research will help to tell a more positive story.

    • Thanks for your wise words, and the information about the PhD re the joy of living in the present and of “flow” with dementia… I’d be very keen to read it! I understand all the great reasons to write sad stories, and also realise if it wasn’t portrayed that way, some of the research funding would dry up… it is such a catch 22! Take care, keep writing and stay strong. x

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  14. Kate – you always put things across in a most wonderful way. Thank you for your thoughts …. and I am glad I changed my blog and FB page to say “My Journey as a Carer for my husband who has Alzheimer’s Disease” on your advice. I had never really thought about the consequences but I am now extremely aware, when I am talking to family and friends, that I don’t refer to my husband as a “sufferer”. Keep up your wonderful blogs. 🙂

  15. Kate this appears to be an international issue as the SDWG have been publically challenging these negative words for years now and yet they are still being used I like the idea of guidelines I know Jean George from the European they have guidelines love your posts

    • Hello dear Agnes, yes, we have all been challenging this issue, some like you for many years, and yet, the lack of respect is still out there. Guidelines are only of vbalue, if people will use them, and as currently most refuse to, then it seems it is up to us to change things… onwards and upwards as a unified voice for people with dementia. xox

  16. My husband says the problem in using the word sufferer/suffering implies that dementia defines the person so that the terminology becomes the focus of attention; act becomes fact; the person becomes overshadowed. It results, to lesser or greater extent, in a loss of the right to self determination.

    The person comes first and that is the basis of all human rights. The term sufferer/suffering patronises, belittles and risks demeaning the person. “Living with dementia” places the person first, but even then may inadvertently place a perceptional constraint on the full rights of the individual to be valued first and foremost for who they are at a deeply human level. This is essentially a human failing that is compounded by semantics. Removing the semantic barrier is only part of the problem, but it is definitely an important part of the solution.

  17. I agree with you Kate and you will increase awareness I’m sure. You’ll be pleased to know I argued this with a journalist last week after he wrote ‘sufferer’ twice. Thankfully he took advice and immediate happily changed his language. Keep up the great work. Denise x

  18. I have been fighting against the negative terminology for years! Every time I speak to a journalist or speaker – I make a point of alerting them to this. We say “a person living with dementia” but I am more than happy to use “a person diagnosed with dementia” as well.xxxxxx

  19. Really good post Kate. You get your point across well. Labels can have such a damadging affect on us all!

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