Non-Required Reading

When I was traveling in the US last year I picked up The Best American Non-Required Reading 2014. I love compilation books, but it was the phrase ‘non-required’ in the title of this one that really piqued my interest.

I’ve long believed that (a) great writers are great readers and (b) great reads are rarely found in academic journals. And, with this in mind, I’ve often fantasised about creating a reading list for PhD students that would improve their academic writing by introducing them to a range of quality fiction, narrative non-fiction, essays, feature writing, and poetry.

Of course some academics would argue that if a PhD student has time to read for pleasure, they’re not working hard enough. But I think this is a dangerous attitude. Most PhD students struggle with writing and the majority of supervisors have neither the time nor the skills to offer meaningful guidance. Encouraging students to read widely and read well is a fast and effective way to improve their writing. It’s also a powerful way to promote the sort of work-life balance practices that are essential to surviving life as an academic! (And if that weren’t convincing enough, there’s also the fact that intellectual cross-pollination of exactly this sort has been responsible for some serious scientific breakthroughs!)

The only real problem I can see is how to narrow down the list. There are so many fantastic things to read and most PhDs only take three years. But I had a bit of time this week and I thought I’d at least have a go. So here, for your consideration, is my draft Non-Required Reading List for PhD Students.

Year One
Every Month: 4 articles of your choosing from LongReads, The Atlantic, or Mosaic
January: To Kill A Mockingbird by Harper Lee
February: Franklin and Eleanor: An Extraordinary Marriage by Hazel Rowley
March: Dept. of Speculation by Jenny Offill
April: Lullabies for Little Criminals by Heather O’Neill
May: The Best Australian Essays (your choice of year)
June: People of the Book by Geraldine Brooks
July: The Vulnerable Observer: Anthropology That Breaks Your Heart by Ruth Behar
August: Cloud Street by Tim Winton
September: Shakespeare on Love edited by Michael Kerrigan
October: Little Black Book of Stories by A.S. Byatt
November: Joe Cinque’s Consolation by Helen Garner
December: All Quiet on the Western Front by Erich Maria Remarque

Year Two
Every Month: 4 articles of your choosing from Long Reads, The Atlantic, or Mosaic
January: The Small Backs of Children by Lidia Yuknavitch
February: Tall Man: A Death in Aboriginal Australia by Chloe Hooper
March: Cutting For Stone by Abraham Verghese
April: An Opening: Twelve Love Stories About Art  by Stephanie Radok
May: My Age of Anxiety by Scott Stossel
June: A David Sedaris book of your choice
July: Electricity for Beginners by Michelle Dicinoski
August: On Beauty by Zadie Smith
September: The Best Australian Essays (your choice of year)
October: Extremely Loud and Incredibly Close by Jonathan Safran Foer
November: The Collected Stories by T. Coraghessan Boyle
December: All The Birds, Singing by Evie Wyld

Year Three
Every Month: 4 articles of your choice from LongReads, The Atlantic, or Mosaic
January: The Unspeakable: And Other Subjects of Discussion by Meghan Daum
February: Eucalyptus by Murray Bail
March: The Beginner’s Guide to Winning the Nobel Prize by Peter Doherty
April: The God of Small Things by Arundhati Roy
May: Out to Lunch by Andy Kissane
June: We Need To Talk About Kevin by Lionel Shriver
July: The Best Australian Essays (your choice of year)
August: The Collected Short Stories of Roald Dahl by Roald Dahl
September: The Amazing Adventures of Kavalier and Clay by Michael Chabon
October: The Mezzanine by Nicholson Baker
November: Nothing to Envy: Ordinary Lives in North Korea by Barbara Demick
December: Dear Committee Members by Julie Schumacher

Got other suggestions? Leave me a comment.

Suicide, Euthanasia, & The Bit In Between

I wrote the following a year ago, but, for various reasons, didn’t post it. Reading Professor Brian Draper’s excellent op-ed on older male suicide today, I decided the time was right to share my reflections on these complicated issues.

I spend a lot of time thinking about death. It’s kind of an occupational hazard. But lately I’ve been thinking a lot about suicide and euthanasia, and the murky area in between.

The dementia research that my colleagues and I conduct focuses on quality of life, particularly for people living in residential aged care facilities. I’m yet to visit one of these facilities and not cry in the car on the way home. Similarly when I talk to families who are caring for people with advanced dementia at home, my heart breaks. Families says things like “She wouldn’t want to live like this”…. “We wouldn’t let an animal suffer, but he has to”… “Hopefully by the time I get to that stage, euthanasia will be legal”. Dementia’s a bitch (as are many terminal illnesses) and people want the option to die with dignity, so I’m definitely pro-euthanasia.

But I also conduct research on suicide. In that research I encounter people who are isolated, trapped by circumstance, or in terrible psychological pain. I also hear stories of families devastated by a loss they didn’t see coming and cannot understand. Suicide’s a bitch and the tragedy is that it could often have been prevented. So I’m definitely anti-suicide.

But can you be pro-euthanasia and anti-suicide? At their core they’re both about ending a life and many would argue that  there is no difference. From my perspective though, the difference comes down to compassion and suffering. Euthanasia is about offering compassion; suicide occurs in the absence (or perceived absence) of compassion. Euthanasia is about alleviating suffering when all other options have been exhausted, while the suffering that leads to suicide can often be alleviated with psychological therapies and better support systems. I think it’s possible to be pro-euthanasia and anti-suicide – to recognise that there is no dignity in dying a slow, painful death, while simultaneously acknowledging that we can do more to support people for whom an early death really would be a tragedy.

What concerns me is that the current public debates seem to suggest that you can only support one or the other. Euthanasia and suicide have both had a lot of coverage in the Australian media lately. The suicide prevention campaigners have set an ambitious goal of reducing suicide rates by 50% in the next 10 years and programs like RUOK Day and Mates in Construction are helping to normalise conversations about suicide. This is a good thing. At the same time, Philip Nitschke and other euthanasia campaigners are continuing to push for laws that will allow doctors to openly support euthanasia for patients who are terminally ill. This is also a good thing. Yet neither side seems willing to acknowledge the overlap in their work. Not every suicide is a preventable tragedy and not every act of euthanasia occurs when all other options have been exhausted. Some suicides might be better described as euthanasia and some acts of euthanasia as suicide.

So what can we do? To be clear, these are merely my reflections, from where I sit right now, this very minute, informed by the experiences that have brought me here. And as such, they are no more or less valid than anyone else’s. I’m also incredibly mindful that this debate takes on new complexity in the context of dementia, where issues of capacity and consent are complicated by cognitive impairment (see here, here, here, here, and here for more on this). But I would like to encourage a public discourse that acknowledges that death – like most things in life – exists on a spectrum. Some deaths are bad, some deaths are good, most lie somewhere in between. If our ultimate goal is a good death, suicide prevention campaigners need to acknowledge that until euthanasia is legalised, they will never be able to prevent all suicides. And euthanasia campaigners need to work harder to develop safeguards and referral pathways for people who could be better supported in other ways.

A little something…

I’ve always been a huge fan of the magazine Dumbo Feather. It’s got substance and style and focuses on real people, doing amazing things, to make the world a better place. So when the team at Dumbo Feather asked me to write a few things about ageing, social media, and how I do the work I do, I was beyond flattered.

The first piece – about how to age powerfully – is online now and you can read it here.  I am indebted to Jane Nethercote & Tegan Sullivan, who saw the value in what I do, were eternally patient, and helped craft my hodgepodge into something readable.

To Wong Foo, Thanks For Everything, Julie Newmar

I woke up at 4am this morning full of dread. My colleagues and I had recently conducted a study of homicidal ideation in family carers and it was about to hit the press. I was terrified that dodgy journalists and click-hungry editors would twist the story, shaming carers and making it even harder for them to ask for or receive the support they need. I was worried that the carers who trusted me with their stories would think I’d sold them out and that the advocacy organisations I work with would regret ever having supported the research.

It’s now almost 8pm and I’ve barely been off the phone. I’m exhausted, I’m hungry, I’m pretty sure I smell, and I am completely overwhelmed by the positive response. From the first story in the Sydney Morning Herald, to an interview with The World Today that I did in my dressing gown, every journalist I’ve spoken to has been respectful, cautious, and genuinely concerned about the wellbeing of carers. Even the outlets that are not normally known for their tact have been incredibly compassionate. 2GB’s Chris Smith, for example, sent a fruit basket to one carer who called in, because he felt so helpless in the face of her despair. And the fact that this was the Most Read story on The Age website today is testament to just how important these issues are!

It’s been a privilege to spend my day talking about carers and the amazing work that they do, raising awareness of the dark times, and encouraging a public discussion about how our society thinks about care. I’ve spoken to journalists from Tamworth to Toorak and I want to send a heartfelt thanks to every one of them for helping us raise the profile of carers and being brave enough to have these difficult conversations without resorting to nasty headlines and cheap clickbait. I especially want to thank those who gave carers the opportunity to call in and share their stories on air – it was compelling, heartbreaking, and a thousand times more powerful than anything I said.

But now my mascara is sliding down my face, my throat is sore, and it’s time for bed. Tomorrow I will get up and keep fighting the good fight. Because carers are worth it!

It’s Complicated

While conducting research on suicide risk in family carers of people with dementia, my colleagues and I received a note from a participant that said You asked if I wanted to kill myself, but you didn’t ask if I wanted to kill the person I’m caring for. Naturally this raised a lot of questions and concerns and we decided to embark on a study of homicidal ideation in family carers. The findings from that study were published this week and I thought I’d take the opportunity to share them here and discuss the implications.

Here’s a brief summary:

  • We interviewed 21 Australians providing care for a family member with dementia.
  • Two reported actively contemplating homicide while caring and four expressed a passive desire for the care recipient’s death.
  • When asked about homicide, four carers talked about euthanasia.
  • Thought of homicide and passive death wishes were the result of physical and psychological fatigue, an unwillingness to place the person with dementia into residential care, self-defence, isolation, and a sense of being trapped in the caring role.
  • Thoughts of euthanasia were framed in terms of compassion, quality of life, dignity and respect for the person with dementia.
  • None of the carers who had contemplated homicide or had passive death wishes had ever acted on their thoughts.
  • Those who spoke of euthanasia were frustrated at the lack of legal options, but adamant that they wouldn’t take matters into their own hands.
  • All the carers who reported homicidal thoughts or passive death wishes were women.
  • None of the carers who had contemplated homicide or had passive death wishes had ever shared their thoughts with anyone.

To our knowledge there has been no previous research on homicidal ideation in family carers. What previous research has shown, however, is that up to 40% of completed spousal homicide-suicides among older adults are perpetrated by someone caring for a partner with a long-term illness or disability. By asking carers about homicidal thoughts while they are caring, the current research allows us to better understand the factors that place people at risk and identify ways to prevent these sort of deaths in the future.

Although thoughts of homicide do not necessarily lead to homicidal behaviour, the fact that some carers are contemplating homicide is a cause for concern and reflects the high level of distress that many carers experience on a daily basis. Unfortunately, some people will be quick to use this work to shame carers who contemplate homicide. Although I don’t condone violence or abuse, I also don’t want to see carers vilified. The vast majority of carers are amazing people, doing an incredibly difficult job, with very little support. So let’s use this research to help them see that they’re not alone and help them find the support they need. Those on the frontline – GPs, social workers, nurses, pharmacists, aged care providers, and advocacy organisations – all have a part to play in identifying and supporting carers who are struggling. These are not easy conversations, but they are important ones.

I think it’s also important to recognise that these findings are indicative of a bigger social problem. It’s easy to think of dementia and caring as personal issues, but they are social, political, and economic issues. In Australia alone there are more than 300,000 people caring for family members with dementia and if they all stopped tomorrow, it would cost the government more than $30 billion a year to replace the care they provide. Carers make a significant social contribution, but much of the stress they experience stems directly from a lack of social, political, and economic support — delays in the dementia diagnosis, a lack of access to quality respite care, a lack of understanding from employers, and the challenges of navigating the aged care system, just to name a few. So while we must work to identify and support individual carers who are contemplating homicide, we must also take action at a higher level, advocating and agitating for a social, political, and economic framework that makes caring a less stressful and more sustainable experience.

The overlap between homicide and euthanasia in this study also highlights the need for a serious public conversation about the right to die with dignity.

As this research gets disseminated – particularly via the media – the findings may be taken out of context, oversimplified, or hijacked. But homicidal ideation in family carers is a complex phenomenon – it cannot be reduced to soundbites, it must not be used for political gain, and there is so much about it we still don’t understand. Ultimately I hope that this research will start important conversations about caring and its role in our society. I also hope it will lead to further research on homicidal ideation in carers (including quantitative studies, comparisons across countries, and research on people caring for family members with other illnesses and disabilities) and help to facilitate the social, political, and economic changes that are needed to better support people with dementia and their families.

If you’d like to read the full paper and have institutional access, please go to the journal website. If you don’t have access, please contact me for a copy.

If you or someone you know is contemplating homicide or suicide, or needs urgent support, please contact Lifeline on 13 11 14, The Suicide Call Back Service on 1300 659 467, or the crisis line in your area.

Just People

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

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.