Blog # 3 re the AFR’s lack of respect for people with dementia

This is blog #3 of mine on the continuing AFR debacle. It seems the AFR does not wish to engage in full and open conversation about their recent lapse in judgement, and obvious serious lack of respect for people with dementia.

A public retraction and apology is still required. No less will be  unsatisfactory, and many others definitely agree with me and the members of Dementia Alliance International

To continue the story, a couple of colleagues of mine and others were published in the Australian Ageing Agenda yesterday in an article Anger over Fin Review’s ‘feral’ dementia story, and I was delighted they accepted my comments about the article, in full.

Advocates and care providers are outraged over a newspaper article that labelled seniors experiencing severe behavioural and psychological symptoms of dementia (BPSD) as “mad, bad and dangerous to know”, sparking a new focus on media representations of dementia.

Prominent dementia experts have described as “misleading, offensive” and “scurrilous” the Australian Financial Review article on the government’s Severe Behaviour Response Teams that appeared under the headline ‘Teams to deal with feral patients’.

The article by veteran Fairfax reporter Christopher Jay, which discussed the tender for the teams that will assist with the care of seniors experiencing BPSD, said that aged care providers were “bracing themselves” for a “surge of feral geriatrics with severe and often violent behaviour problems stemming from dementia.”

Dr Siobhan O’Dwyer, a research fellow at Griffith University’s Centre for Health Practice Innovation, whose research has focussed on dementia and carers, said she was “horrified” by the article.

“It was hard to believe that a respected publication like the Australian Financial Review would publish something that was so offensive and so misinformed,” Dr O’Dwyer told AAA.

She said the use of words such as feral, mad, menace, and dangerous were “particularly concerning and display a complete lack of understanding about dementia and its causes.”

It was important to recognise that the most extreme behaviours arose when families or care staff did not meet the needs of a person with dementia who, because of their condition, was no longer able to express those needs. “So it’s incredibly irresponsible for a journalist to suggest that people with dementia are willfully violent or gleefully running amok in aged care,” she said.

There was already a “great deal of fear, stigma, and misunderstanding about dementia” and this sort of coverage would feed into that, she said. “Journalists have a responsibility to help educate and inform the public and to report in a way that is evidence-based.”

Dr O’Dwyer said the AFR should issue a retraction and an apology. The newspaper should also provide its staff with “training about dementia and the realities of life in aged care,” she said.

The article has been met with fierce criticism from consumer groups such as Alzheimer’s Australia, as well as leading dementia advocates and researchers.” Follow here to read the full Australian Ageing Agenda story.

In this particular article, Dr Tom Morton adds significant insult to injury, by also offending people with dementia, and the AFR continues to call us ‘sufferers’, even though I have alerted him to the Alzheimer’s Australia language guidelines.

Professor Wendy Moyle also had part of her Letter to the Editor which she submitted published to day as well, which with permission I have added here Professor Wendy Moyle_Letter to the editor_AFR_uneditd. Interestingly, the AFR removed the section where she quoted me, before publishing it…

Such open and honest journalism…

This is the part where Wendy quotes me in her full letter; I assume the AFR may have thought at least one word I used was offensive, part of the reason they did not add her letter in full, or it could have been as suggested in a tweet by Dr Al Power, that I couldn’t be quoted, due to being “mad and bad”!!! By the way, Al is a friend, and was not in any way trying to offend me!

Dementia Alliance International, an advocacy support group by and for people with dementia, Alzheimer’s Australia and Alzheimer’s International are organisations that can assist media to use politically appropriate language when talking about people with dementia. Kate Swaffer writes regular blogs about language use and dementia. An example can be found at: https://kateswaffer.com/2014/05/26/diagnosed-with-vs-suffering-fromdementia/ In this blog Kate states that “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”.

I ask that you inform your journalists that work that is offensive to people with dementia will not be accepted in the Australian Financial Review. [Wendy Moyle]. This is what they di publish, and once again, used the word sufferer, even though they have been advised it is disrespectful and offensive to people with dementia.

 

 

23 thoughts on “Blog # 3 re the AFR’s lack of respect for people with dementia

  1. I cannot begin to comprehend what is in the mind of the writer or the editor for allowing such ignorance to be put in to print but, there is no excuse for such scurrilous comments about any human being. Where is their investigative journalism, where is their basic sense of understanding, where is their sense of decency?

    • Thank you Christine and Kate for advocating and speaking out to the demonizing of dementia. The AFR’s lack of response is Very disappointing. I too, feel perplexed, that in the day and age of so much information, that so called ‘senior’ ‘respected’ ‘journalists’ have failed to make the connection between dementia and that it is an organic brain disorder which happens to people, i.e. all people, not subcultures, but real people. What is more troubling is that people in such powerful places (and the media is powerful) hope to impose a view, not be held to account, hold up the get out of jail ‘free speech’ card, not have any empathy and seek to influence public opinion and knowledge…and get it all so wrong. AFR and APC members completely failing to see, that dementia and BPSD might be in their future..I hope not frankly. The attitude that dementia happens to ‘other people’ is such a naïve, unintelligent, ill informed separatist, elitist perspective. I like to think that the Australian Financial Review..currently has teams of people..working this problem that they created for themselves, Perhaps, I am naïve. Alternatively, perhaps they are thinking, that, other sensational news will overtake and all will be forgotten. Waiting..waiting..

  2. Thank you Kate for your untiring defence on behalf of those who do not have the words to speak in their own defence.
    How is one supposed to protest in a situation where one does not have the words to ask for what one needs, and where, consequently, one’s basic human needs will continue to be ignored? Perhaps the expert communicators of the Financial Review can advise the service providers on how better to communicate with those whose care is their responsibility. The problem needs to be located where it most likely originates and persists – in lack of such timely and appropriate care that can prevent increased pain, discomfort and frustration, and so averting, rather than causing, what is perceived, by them, as ” mad and bad ” behaviour.

    • Thanks for your support Judy… together, we have to keep speaking out. In this particular instance, it is very encouraging to have so many people who do not have dementias themselves, speak out for our respect as well.

  3. you can not fix stupidity and meanness – the Fin Review will never be bought again in our house and we have encouraged others to cancel their subscriptions until an apology is issued.

  4. Great post Kate ……. I’m so so sorry that this is interrupting your holiday …. I hope that it will be “over and done with” soon so that you can get on with having a great holiday!!! 🙂 🙂 🙂

  5. I am totally ‘blown away’ by this whole sorry saga and the attitude of the AFR!!! And cannot add any more because my language may offend!!!

    • Thanks Susan… it seems this is one that is going to take some time, but, I am hoping, it will bring to a head, the fact that the media in general are offensive in their labelling of people with dementia.

  6. Reblogged this on Dementia Caregivers Blog – Hope and Harmony – and commented:
    I fail to understand how a paper of the Australian Financial Review’s status could have sanctioned such disrespectful journalism. Their work is words. AFR you failed our country with your powerful prose of derogatory dialogue, speaking about people, someones mother, sister husband brother. I feel increasingly concerned that there is such a poor attitude to people with dementia. Nothing less than a public retraction, an apology, a large remuneration gift to Alzheimers Australia to further the positive work is required.

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