Anger over Fin Review’s ‘feral’ dementia story

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

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.”

Mr Jay wrote that while seniors with various forms of dementia were typically seen as being “vaguely harmless”, a proportion were “turning out to be a menace to themselves and other retirement home inmates – mad, bad and dangerous to know.”

The article has been met with fierce criticism from consumer groups such as Alzheimer’s Australia, as well as leading dementia advocates and researchers.

A spokesperson for the Australian Press Council, the self-regulatory body responsible for responding to complaints about newspapers, confirmed to Australian Ageing Agenda that it had received a complaint about the article, and said its usual processes for assessing complaints was now in motion.

Risk causing ‘unnecessary public anxiety’

Megan-Jane Johnstone, a Professor of Nursing at Deakin University who has written on media representations of dementia, said it was disappointing that the AFR had sought to sensationalise the issue of managing challenging behaviours among seniors with dementia in residential aged care.

Megan Jane Johnstone
Professor Megan-Jane Johnstone

Professor Johnstone said the portrayal of seniors with dementia as being “feral” was not only misleading but risked causing “unnecessary public anxiety about the disease and the nursing homes where people with dementia live for the remainder of their lives.”

“The contention made in the AFR that elderly people with dementia are ‘mad, bad and dangerous to know’ is frankly scurrilous and falls far short of the media ethics of responsible reporting,” she told AAA.

“The failure of the AFR report to communicate and contribute to meaningful public debate and understanding of dementia and the specialised care that people with dementia require is lamentable.”

Professor Johnstone said that the language used and the images created in the minds of readers were particularly concerning. Taken together these had the capacity to unacceptably reinforce the stigmatisation, shame and secrecy that was all too often associated with the dementia, and to seriously undermine informed understanding of the disease and the care options available, she said.

Dr Siobhan O'Dwyer
Dr Siobhan O’Dwyer

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.

Article was a ‘public service’

Dr Tom Morton
Dr Tom Morton

Offering a different perspective, Dr Tom Morton, director of the Australian Centre for Independent Journalism at the University of Technology, Sydney, said that while the language in the article was colourful, it did a public service “by alerting people to the reality of dementia.”

“This is an issue not just for carers in nursing homes, but for my generation who have parents with dementia.

“Both my parents died many years ago, but I have a number of friends and extended family members with parents who have dementia. I think it’s fair to say most people are ill-prepared for what it can be like,” Dr Morton told AAA.

He said that some people with dementia do become aggressive, angry, and abusive towards family members – often their own children – which could be “extremely difficult to deal with.”

“In my view, calling a spade a spade is preferable to the misguided view that we should always present a positive view of people with dementia. The reality is not positive, for anyone. It is better that we are frank about this,” Dr Morton said.

‘No intention of denigrating sufferers’ says editor

AFR editor-in-chief Michael Stutchbury told AAA he had replied to a number of people who had complained about the article and he appreciated their concerns.

“I have sought to assure them that Mr Jay is a very senior correspondent, now in his seventies, who next year will reach 50 years in writing for the Fairfax group of newspapers and particularly the Financial Review,” he said.

“Mr Jay has asked me to reassure them and other readers that he had no intention of denigrating sufferers of dementia or Alzheimer’s. The article was specifically about a sub-class of patients within these general classifications who are showing ‘extreme behaviour’, according to the government tender documents, and creating severe problems for retirement home staff, families and other patients.”

Mr Stutchbury said the AFR agreed it was a serious and growing issue that would require “both plain speaking and sensitivity” from it and other media outlets.

“Sometimes, among all the daily articles in a vigorous publication such as the Financial Review, certain language or opinion does cause offence,” he said.

The AFR had published two letters to the editor complaining about the article and was publishing another letter in today’s paper, Mr Stutchbury added.

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Tags: alzheimers-australia, Australian Centre for Independent Journalism, australian-financial-review, Christopher Jay, deakin-university, dementia, Dr Siobhan O'Dwyer, griffith-university, Megan-Jane Johnstone, Michael Stutchbury, Tom Morton,

16 thoughts on “Anger over Fin Review’s ‘feral’ dementia story

  1. I agree with Tom Morton. Say it as it is. Too many pussy foot around the issue & as sad as dementia is, there are not always strategies to help when they are at this stage.

  2. Tom
    The language was not colorful, it was insulting and stigmatizing. It did not alert people to reality. Rather it treated people as objects who could be publicly denigrated. People with dementia were outraged and hurt. The response from the paper shows there is still no awareness of this or that they were at fault.

  3. In 2014 I spent six weeks in Holland and Scotland as a Churchill Fellow reviewing person centred care practices for those people with dementia. Holland in particular is a world leader in providing sophisticated and compassionate dementia care whilst Scotland has made huge inroads in combating the stigma that surrounds this disease. I had imagined that we in Australia had also made huge strides in combating the fear and mystery that accompanies dementia. But that was before I read the article by Christopher Jay in the Financial Review of 11th June “Teams to deal with feral dementia patients”.

    Stigma comes in innumerable forms; various shapes and sizes and colours, subtly and not so subtly woven into our consciousness, sometimes with the power of the Klaxon horn and sometimes subliminally like a flickering light playing on our darkest fears. And whether whispered or spoken aloud, whether by cliché or caricature, joke, or stereotype, whether through books or films or propaganda, or by knowing looks and smirking chuckles, all stigma has one aim – to rob the individual of their humanity and to separate those of us who are persons from those of us who we regard as less than persons.

    Throughout history numerous groups have had to confront the impact of stigma. The distinction is between insiders and outsiders, between those who are authentic owners of the title ‘person’ or ‘citizen’ or even ‘human’ and the Other; aliens or pretenders who are somehow less than us. We call them by many names. In Nazi Germany they were the Jew, in the former Soviet Empire they were democrats or human rights activists. At a more common everyday level they may be queers, or loonies, or a hundred other insulting expressions that seek to make a distinction between Us and Them.

    This was never so obvious than in the camps of WW 11. The imprisoned were denied a voice, denied dialogue and ultimately denied existence. Jean-Francois Lyotard has written of the transition from person to object. “They were not spoken to, they were treated. The SS or Kapos who called them dogs, pigs, or vermin did not treat them as animals but as refuse. It is the destiny of refuse to be incinerated. The ordeal of being forgotten is unforgettable”

    Am I making too much of the article by Mr Jay? His reference to humans who have been afflicted with that terribly incapacitating illness, dementia, is to call them ‘feral’. They are not people with a brain disease, rather they are more akin to animals or some form of noxious pest. And people who live in residential aged care facilities are not residents but “retirement home inmates” who are, asserts Mr Jay “mad, bad and dangerous to know”. The term ‘inmate’ conjures up prisons or old style mental hospitals so eloquently described by Erving Goffman in his 1961 work “Asylums”. But these people are neither mad nor bad nor dangerous to know. They are human beings who have a debilitating brain disease. I work with them every day. They are much like you and me. They have needs. They experience pain and grief and loss. They struggle to survive. They do not want to be forgotten. They have a voice that needs to be heard.

    Perhaps Mr Jay might like to spend a day with me in my work. Perhaps he might learn some compassion, some understanding, some empathy for people with dementia and their families and their carers who struggle to make sense of their lives. Or perhaps he might not.

    Tony Schumacher-Jones PhD

  4. When you read an article in a publication regarded as having a good standard of journalism you expect to read information built on facts.
    To describe any human being in this manner shows ignorance and disrespect and as the reporter is described to be in his seventies you might wonder if his neurons are heading in a downward direction.

  5. Thank you Tony for putting your position so eloquently. Dementia does not turn people who have lived wonderful lives, contributing to our present day in animal turned wild. Brain disease dose not make a person any less of a person, however it may make it more difficult for us to understand their individual wants and needs. However we can gain that insight and understanding, it may just take more trying on our behalf.

    Thank you to those who are providing us with more insight into dementia and who work so hard to provide a quality of love for those with dementia and their loved ones who are also affected.

  6. While I acknowledge there are two sides to every story and the facts and reality should always prevail, I’m sure the journalist could have framed his message in better ways.

    I don’t condone sugar-coating the hard facts of ageing – for those of us getting older, for people with dementia and especially their families and carers, the reality is all too sharp and increasing familiar.

    The problem with the language in this article is the scare-factor it confirms for those just setting out on this difficult and challenging path.

  7. AFR editor-in-chief Michael Stutchbury has “……sought to assure [complainants] that Mr Jay is a very senior correspondent, now in his seventies, who next year will reach 50 years in writing for the Fairfax group of newspapers and particularly the Financial Review,”.

    You mean for 50 years he might have been writing offensive rubbish like this? It makes you realise why the print media is having such a tough time of things in the market place,

    And he goes on to say that “Mr Jay has asked me to reassure them and other readers that he had no intention of denigrating sufferers of dementia or Alzheimer’s. The article was specifically about a sub-class of patients within these general classifications who are showing ‘extreme behaviour’, according to the government tender documents, and creating severe problems for retirement home staff, families and other patients.”

    Well at least he didn’t argue that he was taken out of context!

    I wish Mr Jay all the best in his retirement. May it be sooner rather than later.

  8. May I first refer everyone to the Alzheimer’s Australia dementia language guidelines. It is extremely offensive, and very outdated, to refer to people with dementia as sufferers. In fact, it is as disrespectful as calling us retards. So, for future stories about dementia, or communications about matters such as this, I would kindly ask everyone refer to them. They can be found on the Alzheimer’s Australia website.

    If, as has been said, Mr Jay is a very senior correspondent, then I feel, it is even less excusable that he has referred to PEOPLE as feral, as mad and bad, or as trouble makers. There is NO sub class of patient who is any of these things.

    If the EIC of the AFR or Mr Jay knew anything about dementia, they would know this is inaccurate.

    It has also put advocacy efforts back almost twenty years, and they remain ignorant of respect for human beings, if they continue to insist this article is appropriate.

    I’m sure the readers here are aware of the UN Convention on the Rights of Persons with Disabilities, to which Australia is a signatory – http://www.un.org/disabilities/convention/conventionfull.shtml

    Note the following sub-clauses:

    Clause e. Recognising that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.

    Clause h. Recognising also that discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person.

    Clause j. Recognising the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support.

    I would hope that, on these three clauses alone, your readers can see I and the members of Dementia Alliance International, a global advocacy and support group for people with dementia, is justified in further raising complaints to the AFR.

    The article may have meant well, but it remains that it is highly disrespectful and offensive to people with dementia. It is ageist, defamatory, and requires a public apology.

    Kate Swaffer
    Chair, Dementia Alliance International
    Chair, Alzheimer’s Australia Dementia Advisory Committee

  9. Today I received my letter of apology from the editor and frankly it was a cut an paste exercise.

    I would ask that this ‘veteran’ of the journalist industry (aged in his 70’s) come and spend some time in a residential care facility to witness the awesome work that is undertaken by the care community and workforce.

    Many people in our society unfortunately will not have any option but to turn towards the professional care and support offered to our most frail and vulnerable and to take on the work that many others are not equipped to or prepared to do themselves.

    Residential homes (formally Nursing) homes have come a long way from the old days and ways that may be the memories of older people like Mr Jay. The new modern care although still institutionalised is more than not a place that offers dignified and respectful care for those have have no choice left.

    Mr Jay has used his public forum to send the image of care back to the dark ages and this is the real disappointing fact. Education and communication is the key to getting the community on board as partners in care to allow us to manage what is coming and that is a big increase in need. We need to encourage more willing and motivated people to come to the workforce …….not be afraid or poorly informed.

    Shame on you and the AFR and I expect to see some better more positive public information that supports the toughest job that pays the lowest of wages.

  10. P.S

    and for the record Mr Jay , I am happy to provide you with all the free education and information that will hopefully transform you into the leader that the AFR claims you are and have been.

    Drew Dwyer PhD

  11. Concerned as everyone else has been about the language contained in this article, we (HammondCare Public Affairs) felt a direct approach to provide a briefing would be a good contribution.

    The journalist took up the opportunity and a useful meeting was held with myself, which included passing on Alzheimer’s Australia’s full language guidelines and our own recommendations. We had lengthy discussions about dementia, aged care and why a range of language in the article was not only harmful, but inaccurate. An offer to visit services stands.

    We also discussed the need for aged care and dementia issues to be more frequently covered in mainstream media. We do want journalists to write about dementia, aged care, health etc and sometimes they will get it wrong, even very wrong. But hopefully they try again with lessons learned.

    That this story occurred in the form it did is also a reminder that many people, still, simply do not have any direct awareness of dementia and aged care (hard to believe for many of us) and so the work of creating this awareness has a way to go.

    I might add that most of us were concerned about this article because at heart, it failed to appreciate that people living with dementia are people, not a problem somewhere in the distance. That it’s personal, extremely personal for many, including my own family. We might be advised, after initial outrage has settled, to reflect that same regard to this journalist, in his mid-seventies, who is not a bad person, and who may yet contribute positively to the issues dear to our hearts.

  12. If only people could understand that the person with dementia could be an electrical engineer, a former nurse, an accountant, a former police woman or man etc, etc. People with dementia are just like you and me, living with dementia, living with hope, living with being different.

  13. Yes I too received the “cut n paste” explanation. On the matter of “inmates” it’s no wonder such language is used when aged care staff use words such as “abscond”, ” intrusive ” etc and the funding models have been set up to use such terrible language. I remember the days of “spastic” being a derogatory term…its time for media to sit up and get educated….and a good place to start would be ceasing to always say “Alzheimer’s or Dementia”… So frustrating. Beautifully put BTW Tony S-J

  14. Dr. Morton,
    I respectfully suggest that the “reality of dementia” takes many forms. In my 25+ years in the sector, I have never met anyone who was “mad, bad and dangerous to know” and certainly no-one who was “feral”. There is no excuse for this type of language and in reality you have absolutely no experience from which to draw. “A friend who had parents with dementia” does not qualify you to “call a spade a spade”. Hopefully, you will learn from the many experienced and learned commentators responding to the highly misguided article.

  15. So, some poorly chosen words were stupidy penned by someone who should have known better.

    I’m surprised at the reaction; when did we all get so precious? We receive daily doses of divisive and derogatory sloganeering from our current government…yet the silence is deafening.

    Seems that taking the high ground is much easier with soft targets

    And sorry, Tony S.J. …..you’re out.

    Reductio ad Hitlerum

    Invoking the Nazis?

    Really?

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