Author: Siobhan O'Dwyer

Just People

/ Siobhan O'Dwyer / 4 Comments

Feral. A menace to themselves and others. Troublemakers. Mad, bad, and dangerous to know. That’s how Christopher Jay described people with dementia in a recent article in the Australian Financial Review. 

The purpose of the article was to highlight the Australian Government’s call for tenders for the creation of Severe Behaviour Response Teams. According to Jay, these teams will be “a mobile workforce of clinical experts available to provide timely and expert advice to Commonwealth-funded approved residential aged care providers that request assistance to address the needs of people with very severe and extreme behavioural and psychological symptoms of dementia (BPSD). SBRTs will assess the causes of the behaviours, assist care staff until the immediate crisis is resolved, develop a care plan to address and deal with behaviours, then provide follow-up assistance as needed. This may include the training and upskilling of staff to enable them to appropriately manage residents with extreme behaviours.”

And I’ve got no problem with that. The behavioural and psychological symptoms of dementia are a serious issue and staff in aged care facilities do need better training and support to manage them. My problem is with Jay’s implication that (a) people with dementia are being willfully violent and (b) the solution is to restrain and sedate.

Dementia is the term used to describe a collection of symptoms caused by disorders affecting the brain. Disorders like Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, and Creutzfeldt-Jacob disease. Consequently, a person with dementia has no more control over the behavioural and psychological symptoms of their condition than a person with epilepsy has over their seizures. Restraints and sedation are inhumane. They also increase morbidity and mortality, and do nothing to address the underlying cause of BPSD. But here’s the kicker: while a certain level of behavioural and psychological disturbance is a normal part of dementia, the most extreme behaviours are caused by other people’s inability to meet the needs of a person with dementia when, as a result of a degenerative brain disorder, they have lost the capacity to express those needs. Most extreme behaviours are the result of social isolation, a lack of meaningful activity, overstimulation, and undiagnosed or untreated pain and infection. A failure to understand this, and respond appropriately, is the real reason that staff, families, or other residents in aged care find themselves on the receiving end of physical violence, verbal aggression, or resistance. It’s also, apparently, the reason that journalists write inflammatory articles in major newspapers.

I wasn’t the only one who was horrified by Jay’s ignorance. The dementia community were vocal in their disgust, but letters and tweets to the Financial Review have gone unanswered. The Australian Press Council told those who lodged complaints that they saw nothing worth investigating. And when I offered to write a response for The Conversation, I was told that calling people with dementia feral wasn’t “a strong enough hook”. I couldn’t help but wonder if the response would have been different if Jay had described Indigenous Australians as feral. Or gay men. Or people with a disability. Or people with mental illness.

I once went to a costume party dressed as Demi Moore’s character from the movie GI Jane. The movie is about the first woman to complete Navy SEAL training and there’s a great scene where an African American soldier tells Moore’s character that the discrimination she’s facing now is the same discrimination his people faced 50 years ago. He says “You’re just the new nigger on the block, that’s all”. And so it is with dementia.

People fear what they don’t understand and a huge amount of work has gone into helping people understand homosexuality, disability, mental illness, and Indigenous culture, and helping our society move away from language, legislation, and funding models that view institutionalisation, criminalisation, and dehumanisation as the “solution” to these “problems”.

Around the world hundreds of thousands of people have devoted their lives to dementia. Researchers, advocates, health professionals – all working to increase awareness, understanding, and funding, and develop better models of diagnosis, treatment, and care. But a single article in an influential newspaper can undo years of good work. And when The Press Council and The Conversation are complicit, it’s easy to feel defeated. But what we’ve learnt from sexuality, disability, mental illness, and Indigenous advocates is that social change takes time, that it starts at the grass roots, and that we cannot give up. We must keep doing good work, keep agitating for change, and keep educating the likes of Christopher Jay.

People with dementia are not feral. They are not a menace to society. They are not mad, bad, or dangerous to know. They are just people. People who have worked jobs, raised children, loved, and been loved. People who are trying to keep their dignity and humanity as their brain (and the world) rips it away. People who need our support and our understanding. People.

Love’s Not Enough

/ Siobhan O'Dwyer

Since its release in 1967, The Beatles’ All You Need Is Love has been adopted as the anthem for everything from the anti-war movement to a Las Vegas casino.  And now an article published in The Australian wants us to believe it’s also a good anthem for dementia.

In an article titled Dementia: A scourge that only love can overcome, Trent Dalton presents the moving story of Brian Sands, a man doing everything he can to keep the love alive as his wife’s dementia progresses. I’m a big believer in the power of stories. To paraphrase Brene Brown, stories give soul to data. They help us to understand what it means when we say “320,000 Australians are living with dementia” or “200,000 Australians identify themselves as the primary carer for a family member with dementia”. But stories without data are just anecdotes and anecdotes don’t change research, policy, or practice. Neither does love.

Love doesn’t pay for respite care when you’ve used up the measly 63 days supported by the Government.

Love doesn’t stop you from contemplating suicide when the physical and psychological toll of caring is more than you can bear.

Love doesn’t pay a researcher’s salary while they search for a cure, a treatment, or better care.

Love doesn’t make aged care a more attractive place to work.

And love doesn’t make it any easier to come to terms with a diagnosis of dementia.

Although Dalton’s article honours the experience of Brian and Rosemary, it is simply bad journalism to present a story of dementia without mentioning some facts and figures. Like the fact that the demand for family carers in Australia will exceed supply by 2029. Or the fact that without significant policy change there will be a shortage of nearly 60,000 staff in Australian aged care facilities within two decades. Or the fact that the Abbott Government’s $200 million for dementia research is just spare change compared with what’s actually needed to find cures, treatments, and better models of care.

Media articles that focus only on individual stories contribute to a social and political view of dementia as a personal issue. A matter for families to deal with; in the privacy of their own homes. This is a view that makes it easy for governments to tell themselves (and voters) that they are doing enough. But dementia is not a personal issue. It is a social, political, and economic one, and we ignore it at our peril.

People with dementia, family carers, and researchers deserve better from the Government and they certainly deserve better from newspapers and journalists. If we want an anthem for dementia, let’s look to The King: A little less conversation, a little more action please.

Still Alice – The Podcast

/ Siobhan O'Dwyer

Following on from my post about the film Still Alice, I was recently invited to take part in the Alzheimer’s Australia Dementia News Podcast. Hosted by Dr Ian McDonald (AA’s Research Communications Officer), the podcast explores the film in more depth and considers whether it will make a meaningful contribution to public understanding of dementia. The other guests were Dr Andrew Watt (from the Florey Institute) and Jill Brown (a dementia educator), and you can listen to the podcast here.

Still Alice

/ Siobhan O'Dwyer / 6 Comments

I knocked off early yesterday to see an advance screening of Still Alice, the film adaptation of Lisa Genova’s novel about a professor diagnosed with younger onset dementia. As a dementia researcher, avid filmgoer, and fan of the book, I walked in with high expectations… but if Still Alice had been a film about anything other than dementia, I would have walked straight back out.

Yes, Julianne Moore is fantastic and it’s great to see younger onset dementia on the big screen. But as a piece of cinema, it’s appalling. The pacing is uneven, the other actors are painfully earnest (Alec Baldwin as a professor? Please!), and the dialogue is straight out of a soap opera. As a vehicle for improving public understanding of dementia, it also lacks depth. The portrait of a white, wealthy, heterosexual woman with a supportive family, a private neurologist, and in-home help misrepresents the reality of life for most people with dementia and their families. To be fair, this portrayal is true to Genova’s book, but I think it’s also indicative of a bigger problem in mainstream cinema.

The mainstream film industry loves an actor who can portray a cognitively or intellectually impaired person with just enough pathos to make us cry into our popcorn but not so much method that we’d be uncomfortable. Think Sean Penn in I Am Sam, Tom Hanks in Forrest Gump, Leonardo DiCaprio in What’s Eating Gilbert Grape, Julie Christie in Away From Her, and Robert Downey Jr’s great line about “not going the full retard” in Tropic Thunder. The mainstream film industry prefers actors and screenplays that make us believe that if we met this character in the real world we wouldn’t treat them with the same ignorance, arrogance, and discrimination they’ve encountered on screen.  And it simply doesn’t option books or greenlight screenplays that are too realistic*, preferring to leave the tough stuff to foreign films, independents, and documentaries which, no matter how good they are, simply lack the reach to change public perceptions.

Still Alice is no exception. Yes, we see Julianne Moore wet herself when she can’t remember where the bathroom is and, yes, we see her raging against the diagnosis. But it’s all comfortably cocooned in cashmere sweaters, summer houses, and a functional family dynamic… and it’s not even half of what people with dementia and their families deal with on a daily basis.  This is not the woman who puts her husband with dementia on the bus while she walks home because they can’t afford two fares. This is not the gay man with dementia who’s forced back into the closet because the nursing home staff don’t want other residents to feel “uncomfortable”.  This is not the Murri man found naked in the neighbourhood playground at 2am and taken to the Watch House instead of a hospital. This is not the migrant who’s lost her English but can’t access a care worker who speaks her native language. This is not the woman who is constantly told “you don’t look like you have dementia”. But it’s only when we see these stories on the big screen that public understanding and attitudes might begin to change.

A film shouldn’t be lauded just because it’s about dementia. Actors shouldn’t receive awards for being the best part of a bad film. If the mainstream film industry is going to ‘do’ dementia, let’s demand they do it well. Let’s insist on great films about real people that are compelling, well scripted, well acted, and beautifully made. Surely people with dementia and their families deserve that much.

Notes:
*Barney’s Version, starring the great Paul Giamatti, is a notable exception when it comes to recent mainstream films about dementia, but despite being a compelling and beautifully uncomfortable film, it still has a white, wealthy, heterosexual protagonist.

Caring ‘Til It Hurts

/ Siobhan O'Dwyer / 4 Comments

This piece, written by me, was originally published in the Australian Journal of Dementia Care (Volume 3, Issue 6, December 2014/January 2015, p33-34) under the title Caring ‘Til It Hurts: Suicide Risk in Family Carers. It was designed to introduce aged care staff, health professionals, and service providers to the issue of suicide risk in family carers and is reproduced here with permission. For ease of reading I have removed the references, but I am happy to provide them on request. 

 

The first thing I noticed about Ken* was his arms. Thick and tanned, they were the kind of arms that could carry you out of a burning building without breaking a sweat. Arms made strong by years of physical labour, first on the farm and then on the battlefield. Arms that now spent their days lifting. Lifting her in and out of the car, on and off the toilet, in and out of the bed they no longer shared. Always lifting.

As Ken and I spoke, I watched the arms. At first they were crossed firmly over his chest – the body trying to stop the man from giving away too many secrets. After a while the shoulders dropped and the arms uncrossed, but the hands remained firmly clasped – the body only prepared to meet the man halfway. But after two hours, the arms gave up. The man cried, the body shook, and the secrets were revealed.

****

More than 200,000 Australians currently identify themselves as the primary carer for a family member with dementia and one in four of them provide in excess of 40 hours care per week. As a result of the cognitive impairment and behavioural problems, caring for a person with dementia is acknowledged to be more demanding than caring for someone with a physical disability and this intense work can lead to physical and mental health problems. Rates of anxiety, depression, and hopelessness are all higher than average in family carers and pain, fatigue, and chronic health conditions are also common.

Although depression, anxiety, hopelessness, pain, and chronic disease all have been linked to suicide in the general population, until recently there had been no research on suicidal ideation or suicide risk in family carers.

This article provides an overview of research my team and I have recently conducted on suicide risk in family carers and provides practical suggestions to help staff in clinical and community practice identify and support carers at risk.

Why suicide? Why now?
Although academic research on the physical and emotional experiences of carers only dates back to the 1950s, Harriet Beecher Stowe and Louisa May Alcott were writing about the tribulations of caring in the 1800s and archeologists have found the remains of Neolithic adults who could not have survived childhood without dedicated family care. Caring is clearly not a new phenomenon and my colleagues and I were intrigued that suicide had not been the focus of more research.

In our careful searches of the academic literature we were able to find only one previous study of suicidal ideation in family carers of any sort (not just dementia). In 1997, Cynthia Rosengard and Susan Folkman reported that more than 50 per cent of gay men caring for a spouse with AIDS had contemplated suicide. Interestingly, experiences of suicidal ideation were unrelated to the carer’s own HIV status. The only other evidence we could find came from studies of homicide-suicides committed by older adults. Although homicide-suicides are rare, in those studies up to 50 per cent of homicide-suicides were committed by spousal carers, with approximately 20 per cent of those caring for a spouse with dementia.

What did we do? And what did we find?
We started our research by interviewing a small group of just nine carers (four men, five women). We wanted to get a sense of how many carers had contemplated suicide and the factors that might be associated with suicidal ideation, before we embarked on a larger project.

Four of the nine participants had contemplated suicide while caring for a person with dementia and Ken (referred to at the beginning of this article) was one of those four. For the other carers, suicide was a way to escape the relentless demands and overwhelming fatigue of caring (or, as one participant described it, “to get off the merry-go-round”). For Ken, it was about ensuring that his wife would always be well cared for. He said: “A couple of times there I thought about how I could get away with bumping myself off…because my insurance and all my stuff would’ve set my wife up forever.” Although none of the nine carers had attempted suicide, two had made preparations.

Our next study included 120 family carers who completed an anonymous survey about their health and well-being. When we analysed the data we found that one in four had contemplated suicide more than once in the previous 12 months. Of those who had contemplated suicide, only half had ever told someone and one-third said they were likely to attempt suicide in the future. When we compared those rates to population averages, we found that family carers were contemplating suicide at more than eight times the rate of the general population.

Which carers are at risk?
In our first study, there were three factors that appeared to put carers at risk of suicide: mental health problems prior to becoming a carer; physical health problems while caring; and intense conflict with family or professional care staff.

For the carers with pre-existing mental health problems, the long hours, demanding physical labour, and isolation of caring exacerbated their symptoms and made it difficult for them to cope with the challenges of caring or to seek help.

For those with physical health problems, suicidal thoughts cropped up when the condition was aggravated by the caring role, there was ongoing pain, and time for self-care was limited. For the carers with physical health problems, an inability to seek help (due to exhaustion) went hand-in-hand with an unwillingness to seek help for fear of being seen as incompetent. Finally, for those carers who faced intense interpersonal conflict, it was the resulting isolation, helplessness, and vulnerability that led to thoughts of suicide.

In our larger study, carers who had contemplated suicide reported more behavioural and psychological symptoms in the person with dementia and, for their part, stronger negative reactions to these symptoms. They were also less confident in their ability to access support services, less optimistic, and less satisfied with the social support they received. They had higher levels of burden, hopelessness, anxiety, and depression, and made greater use of dysfunctional coping strategies (like alcohol or drug use). When we put all these factors into a statistical model, depression was the only significant predictor of suicidal ideation.

What about resilience?
Our research revealed that one in four carers had contemplated suicide and this is certainly a finding that warrants serious concern. On the flipside though, three out of four carers had not contemplated suicide and by studying these carers we can identify the factors that promote resilience and develop targeted interventions to support carers at risk.

In our first study, the factors that fostered resilience were: the use of practical coping strategies; personal characteristics like determination and flexibility; social support; and faith.

Coping strategies such as seeking out information and support, maintaining hobbies, connecting with other carers, and using respite services all allowed carers to recharge their batteries and ameliorated the impact of caring on their physical and mental health.

Carers who could draw on internal reserves of compassion, determination, and flexibility were more able to accept the challenges of caring and responded more proactively to specific stressors.

Social support from family and service providers gave carers time to engage in self-care and the most resilient carers were those who could communicate assertively about the sort of support they needed.

Finally, faith provided carers with a framework for reflecting on their experiences, seeing the ‘bigger picture’, and recognising that the caring role had a purpose, was finite, and would eventually pass.

In our second study, the low rates of optimism, self-efficacy, and satisfaction among carers who had contemplated suicide suggest that these factors may also play a role in resilience.

What can you do?
Although our research is continuing, we now know that carers are indeed at risk of suicide and, as a community, we need to work to address this issue. Clinicians, allied health professionals, care workers, and service providers are ideally placed to identify and support carers at risk, but many are, understandably, apprehensive.

To ensure that clinical, community, and residential care staff can provide the best possible support, they need to know how to ask about suicide and where to refer carers at risk.

  • Living Works offers Applied Suicide Intervention and Skills Training (ASIST) courses all around the country and these two-day courses provide an excellent introduction to suicide and suicide prevention, including role-playing the difficult conversations. More information is available at: livingworks.com.au/Training-Programs.html
  • Carers in crisis should be referred to Lifeline or the Suicide Call Back Service. Lifeline (13 11 14) is a telephone support service that provides 24-hour, confidential, crisis counselling. The Suicide Call Back Service (1300 659 467) also provides 24-hour telephone counselling and offers six free follow-up sessions with the same counsellor, at any time that suits the caller.
  • Carers experiencing mental health problems should also be encouraged to talk to their GP, who may be able to provide a referral for subsidised sessions with a psychologist or psychiatrist.
  • Finally, health professionals, care workers, and service providers can also help to prevent carers ever reaching crisis point. As Ken’s case illustrates, a cup of tea and a listening ear can go a long way to making a carer feel valued and supported. Providing quality respite care, helping carers connect with services, and fostering a community of carers can also help to ease the load.

****

As Ken showed me to the door, I looked again at the arms. They were swinging gently by his sides, unburdened now of the story they had carried for so long.

*Not his real name.

Powerful Ageing

/ Siobhan O'Dwyer / 1 Comment

I was recently invited to be a guest on Adam Holcroft’s Dojo of Powerful Ageing Podcast. It was a wide-ranging conversation that covered everything from social media and dementia to hipsters and self-care. It was a real treat to talk to Adam and you can listen to the interview here (Note: It starts at 00:04:45)

Adam also creates a beautiful artwork to go with each podcast and I am completely in love with mine. It’s like Hemingway meets Logan’s Run, with a dash of Warhol, and it really captures who I am and what I do. Thanks Adam!

Screen Shot 2014-10-11 at 11.26.15 PM

Lifting & Leaning

/ Siobhan O'Dwyer

This piece, written by me, was originally published in the Australian Ageing Agenda, under the title ‘Promoting Good Mental Health for Carers’. It appeared as part of AAA’s focus on Mental Health Week and is reproduced with permission.

I read an article earlier this year in which Joe Hockey was described as having the toughest job in the country. After spraying a mouthful of coffee over my newspaper, I wondered what the country’s carers would think of that. Caring is a tough gig, but few and far between are the carers who fly business class, smoke cigars, or can expect to retire with a pension in excess of $100,000 per year.

Instead, carers spend their days lifting, showering, dressing, toileting, feeding, medicating and managing; often at the expense of their own physical and mental health. Carers experience higher than average rates of depression, anxiety and hopelessness, and my own research has found that family carers of people with dementia contemplate suicide at eight times the rate of the general population. In Mental Health Week, it is important we take time to acknowledge family carers – the people who really have the toughest job in the country – and explore how we might better support them in their role.

While systemic change takes time, there are four things we can do right now, this week, to promote good mental health for carers:

  1. Value their contribution: Feeling valued is an important part of good mental health and we can all do something to show carers we value the contribution they make to our community. If you are a neighbor, drop off a home-cooked meal. If you are a service provider, make time for a cup of tea and a chat. If you are a politician, arrange a consultation with the carers in your electorate.
  2. Encourage self-care: Self-care is the key to good mental health, but few carers can find the time. If you know a carer, offer to relieve them for a few hours this week so they can see a movie, get a massage, or go for a swim.
  3. Recognise carers as experts: Carers have a wealth of knowledge and experience, but they are often ignored or relegated to the waiting room. Health professionals, service providers, and other frontline staff should make a commitment this week to see carers as partners in care. This will empower carers and ensure the best possible outcome for the care recipient.
  4. Tackle stigma: The stigma that exists around suicide and mental illness can be a real barrier to help seeking. Many carers also encounter stigma associated with the disability, dementia, or other condition that affects their care recipient. This week, support the journalists, artists and film-makers who are committed to raising awareness, and take a stand against the media outlets that foster ignorance and fear.

In his Federal Budget speech this year, Joe Hockey told us it was time we all became “lifters, not leaners”. Carers are some of the best lifters I know, but in Mental Health Week, let’s lean in and give them a hand.

Carers who are contemplating suicide are encouraged to call Lifeline on 13 11 14 or the Suicide Call Back Service on 1300 659 467. Carers who are experiencing depression or anxiety are encouraged talk to their GP about subsidized sessions with psychologist.

On Voyeurism and Tragedy

/ Siobhan O'Dwyer / 2 Comments

On a cool Friday night in downtown Brisbane, people gathered to hear a famous author speak. Predominantly middle-aged and middle class, the stylishly attired crowd talked amongst themselves about their favourite books and rushed forward when the doors opened, eager to sit near the front. They listened closely as the author spoke – laughing, sighing, gasping in shock. And when she finished, they queued and asked her to sign the inside cover of her latest work.

This was my first time at a Writers Festival and the whole thing made me deeply uncomfortable. Why? Because the author was Helen Garner and the book was This House of Grief, the true story of a man convicted of killing his three children by driving his car into a dam.

To be clear, I admire Garner. As a writer she has an amazing ability to capture the complexities and discomfort of life’s darkest moments.  But there was something voyeuristic about the crowd that came to hear her speak. This was their Friday night entertainment. They had dinner reservations afterwards. They wanted an autographed copy of the book!

As I caught the train home, I wondered what it was about homicides, suicides, and other tragic events that brought out the voyeur in people. What makes people trawl newspapers and websites looking for the ‘exclusive interview’ with the grieving widow? What makes them watch the ‘dramatic reenactment’ on prime time television? How are they able to set aside the fact that these are real people and put a bookmark in when it’s time to pick the kids up?

But perhaps I judge too harshly. Perhaps it isn’t voyeurism, but simply a desire to understand the darker parts of human nature. Perhaps, because we are often shielded from the darkness, people struggle to know how to express their interest or concern appropriately. Perhaps a Writers Festival is a safe space to discuss the issues with like-minded people. And yet, the autographs…

For my part, I was interested in Garner’s experience as a researcher and writer, and was hoping to find a connection with someone who’d been where I was. I had recently finished analysing data for a study of homicidal ideation, a follow-up to earlier research on suicide risk in family carers. When I’d listened to the recordings of the research interviews, I’d had to wash dishes, knit, or draw. The repetitive, physical tasks kept my body occupied while my mind swam in the tragedy. Without them, the flight-or-fight response would have kicked in and I’d have turned off the tapes. Unlike the voyeurs at the Writers Festival, I would have given anything to look away from the car crash.

When I bought my copy of This House of Grief, the bookseller made a point of telling me how traumatising I would find it; as if being traumatised was a badge of honour. When I told her I did trauma for a living, she clicked her tongue and moved on to the next customer. It was as if she’d invited me to an S&M club and when I told her I was the warden of a detention centre, I was the one who’d crossed the line.  I wondered if what the voyeurs want is just enough tragedy to be titillated. Just enough to get a whiff of the humanity, but not so much that they have to get their hands dirty. They want grief and trauma, but only if it doesn’t pull them too far out of their comfort zone. And perhaps this is why Garner’s books sell – because she’s already done the hard work.

But here’s the thing – I didn’t find This House of Grief traumatic. I just found it depressingly familiar. For those of us who work in this space – researchers, doctors, lawyers, journalists, social workers – the darkest moments are all too common. We see them daily. They aren’t titillating anecdotes to tell at the next dinner party, they are big issues that we will spend our careers trying to address. And when the voyeurs have moved on to the next book, the next Writers Festival, the next ‘award-winning two part series’, we will still be here. Not watching from a safe distance, with cocktail in hand, or reading on the couch with a cup of tea and a Kit Kat, but working in the trenches to support people and shine a light on the darkness.

The Curated Self

/ Siobhan O'Dwyer / 15 Comments

My first stop in any city is the art gallery. I’m passionate about great art, I like to buy works from local artists when I travel (a habit my financial planner is desperate to break!), and I’ve often fantasised about going back to university to study art history.

What fascinates me most about art galleries is the curation. The process of deciding what pieces to include and what pieces to leave out; whether to present the pieces chronologically, by theme, or by medium; how much information to include in the accompanying description; what colour to paint the walls; and how to promote the exhibition.

Curation is, itself, an artform and I often use the language of art when I talk to academics and students about social media and their online presence. Deciding on the what, where, when, how, and why of the information we present to the public is an act of curation.

My Twitter account, for example, is carefully constructed. I work hard to keep 70-90% of my content ‘on message’ – that is, tweets about dementia, carers, suicide, health, ageing, and research – and to ensure that only 10-30% are general interest or personal. I also keep the personal content suitably generic. Enough that people get a sense of who I am and feel they can connect with me as a person, but not so much that they  know which brand of toothpaste I use.

When it comes to my tweets, I’m constantly mindful of the fact that Twitter, just like an art gallery, is a public space. My tweets can and will be seen by current or prospective employers, funding bodies, students, colleagues, industry partners, and journal editors. And, whether I like it or not, I will be judged by my tweets.

This website is also an act of curation. I realised there were parts of my personal exhibition all over the web. A few journal articles here, some media coverage there; a slideshow over on that site, some tweets over on this one. By bringing them together in one place, I had an opportunity to curate my self. I got to decide what parts of my self to include and what parts to leave out, how to group my works, and what colour to paint my walls. And in doing so I was deciding how to promote my self.

Most academics are bad at curation. It’s not something we’re trained to do and we often learn by trial and error. But if we can learn to do it well, we increase the likelihood that our research will lead to meaningful changes in practice and policy. In its first week online, for example, this site had more than 900 views (from people in 30 different countries) and I’ve had requests from clinicians around the world to use my research to support their practice. Carefully curated content can also help to breakdown the negative stereotypes of researchers and scientists and increase community engagement.

So the next time you’re at an art gallery, don’t just look at the art. Look at the walls, the lighting, the descriptions, the sequence and the promotional materials. And then, like all great artists, steal those ideas and apply them to your own work.

Who’s Afraid of the Big Bad Journalist?

/ Siobhan O'Dwyer / 8 Comments

I was recently invited to take part in a workshop, hosted by the AAG, entitled ‘Navigating the Media Jungle’. It’s a dreadful title, but it reflects the level of trepidation most researchers feel about having to engage with the media. In preparation for the workshop I’ve put together my top tips for postgraduate students, early career researchers, and academics seeking to engage the media. I hope these will reduce your fear and make your next encounter with a journalist a more rewarding one (for you and them!).

Stalk Your Prey
How much do you know about the media? How much (and what type of) media do you consume? If you want to navigate the media jungle, you need to stalk your prey (that’s the only jungle reference in the whole post, I promise!). By consuming plenty and varied media, you’ll have a better understanding of where and how to pitch your work for maximum impact.

But don’t just consume media passively, pay attention to the following….

  • How often do they publish or broadcast? Constantly, daily, weekly, monthly…
  • What type of pieces do they produce? Short, long, left-leaning, conservative, human interest, political, scientific…
  • Who is their audience? Children, adults, older adults, working class people, middle class people, people from culturally and linguistically diverse backgrounds…

This type of information will allow you to target your work to the outlets most likely to run with it (see ‘Pick Your Battles’ below), and give you a sense of the timeframes within which you’ll need to work. Programs like The Media Report also offer great insight into the ‘behind the scenes’ of journalism and the media.

Make Friends with the Journalists
Repeat after me: Journalists are people too. Academics often talk about journalists like they’re the enemy, but if you’re really passionate about communicating your work to the public you need to make them your ally.

Twitter is a great way to engage with journalists. You can use it to provide positive feedback on their latest story, introduce them to your work, and respond to calls for ‘talking heads’. If a journalist comes to know you as a reliable, positive source, they’re much more likely to be interested in your work down the track. Top tip:  Don’t badger them. If a journalist decides you don’t have enough for a story, say thank-you and move on.

Also, if you’re working with print journalists, it’s okay to ask to see a draft of the article. Some journalists will say no (& you must respect this!), but those who care about getting the facts right are often happy to oblige. A few tips to smooth the way…

(1) Explain why you want to see it.

(2) Don’t change the copy. Journalists are entitled to their perspective on a story and as media professionals they know what will attract readers, listeners and viewers. So correct technical errors, but leave the rest alone.

(3) Give feedback promptly. Journalists work to tight deadlines and if you don’t give your feedback promptly, they will go ahead without your input.

Start Small
If you’re just starting out, try pitching your work to local papers and community radio stations. They ‘re always eager for stories – particularly those that have a local flavour – and are less intimidating for first timers.

Also, start with print media (where there’s time to review a story before it goes to press and kind journalists will edit your waffly sentences into something tighter) and work your way up to radio and then television. Print and radio interviews are often done over the phone, which allows you to have your notes in front of you and be wearing whatever makes you comfortable. Television requires you to speak without notes and look professional, so it’s not for the faint-hearted.

Pick Your Battles
While it’s tempting to send your press release to every media outlet, it’s not always the smartest move. It’s important to pick the outlets that are going to do justice to your research and whose journalists have the necessary time and experience.

If your work has the potential to be sensationalised (topics like suicide or terrorism, for example), you may want to steer clear of the commercial television and radio programs, and stick to the ABC (in Australia), the BBC (in the UK), and PBS or NPR (in the USA). Similarly, if your work is highly technical, you may want to avoid the major daily papers and instead target high-end websites and magazines like Wired or New Scientist. If your work has a ‘human interest’ angle and you can connect journalists with real cases, target longer-form publications such as The Monthly or The Atlantic. These are also good targets for people whose work is historial, political, or creative.

Prepare, Prepare, Prepare
Unless you are a seasoned professional (and trust me, you’re not), you should never do a media interview ‘off the cuff’. Never! Ever!

Instead, prepare a series of short, concise statements about your work. Think about the type of questions a journalist is likely to ask and have one statement prepared for each. Print these out and have them in front of you when you’re doing an interview. Make sure that you include some statements about the real world implications of your work and, where possible, be ready to recommend a real person the journalist can talk to (i.e. someone who’s had the experience you’re talking about, or whose life would be affected by the findings).

It’s also okay not to answer a question. Do this politely by explaining that it’s outside the scope of your expertise or wasn’t part of the research you conducted.

Work with Your University’s Media Office
Your University’s media officers deal with journalists every day and many of them are former journalists. They can help you draft and distribute press releases, arrange interviews, and even give you one-on-one media training.

A few tips to help them help you…

(1) Give them plenty of warning. You are not the only researcher in the university and it takes time to draft press releases and liaise with journalists. A week’s notice is ideal, even more if you can swing it.

(2) Draft your own press release, or at least provide some dot points. This can help if your work is highly technical or if you have a particular spin you’d like put on your story. When drafting press releases, remember to write for your audience. Keep the language simple, put the most important information at the top, and provide real world examples.

(3) Tell them who you’d like to target. Use the information provided in ‘Stalk Your Prey’ and ‘Pick Your Battles’ (see above) to identify the media outlets most likely to be interested in your story.

Work with the Journal’s Publishers
If you want media coverage to coincide with the publication of an academic journal article, you should work with the journal’s Publishers. They can tell you the exact date that your paper will go online and you can use this to schedule your press release. As a professional courtesy you should send a copy of any media coverage to the Publishers and the journal’s Editor.

Be Available
Your diary should be completely clear the day you send out a press release. You should have access to the internet and your phone should be fully charged. If a journalist can’t get hold of you they will either (a) write the story without your input or (b) dump the story and move on to something else. Neither is a good outcome.

On a related note, once you develop a profile, journalists may contact you for commentary on current events or other research. Only say yes if you really know what you’re talking about and, if you have to say no, try to recommend someone else so that you get a reputation for being professional and helpful.

Get More Bang for Your Buck
The 24hr news cycle means there is a constant demand for ‘new’ news. Unless your story has legs (i.e. it’s the cure for cancer), it’s unlikely to be replayed or republished after the initial broadcast or print run. But you can maximise its impact with your own Twitter account or Facebook page, as can your colleagues and your University. If you have a website or blog, you might consider adding a media page that includes links to all the coverage of your work.

Accept That Your Story May Not Make It
If the Prime Minister resigns the day you send out your press release, chances are your story won’t run. This  is just the way it works and there’s nothing you can do about it. Keep your fingers crossed and hope for a slow news day.

Keep It In The Family
Finally, in the interests of full disclosure, I should note that I am related to a journalist. I sent a draft of this post to my sister – the talented Erin O’Dwyer – to make sure I hadn’t missed or misrepresented anything. She gave all of the above her journalist’s seal of approval and offered the following additional tips:

  • Be easily searchable. (My interpretation: If you’re not online, you don’t exist)
  • Reply promptly to social media, email and phone enquiries.
  • Keep your language informal. (She wrote this twice, so it must be important)
  • Add yourself to expert lists, including your mobile phone number.
  • Never send a press release to a generic info@ or news@ email address. Phone and ask to speak to the chief of staff or the specific reporter. Then send your release directly to the right person.
  • If a journalist has recently written a story on a particular topic, say asthma or loneliness, they’re unlikely to want to revisit the same topic straight away.

Got any other tips? Please leave a comment.