What’s care got to do with it?

I haven’t posted anything here for a while. But it’s not because I didn’t have anything to say. It’s because I’ve been trying to practice what I preach.

I spend the vast majority of my professional life talking about care – who gets it, who doesn’t, why it’s important, what happens when there’s not enough, and what happens when there’s too much. And although my research generally focuses on care for others, this year I turned my attention to self-care. Because the great irony of doing good research on the care of others, is that it often comes at the expense of caring for yourself.

Co-written with my Australian colleagues Sarah Pinto and Sharon McDonough, my latest paper explores the the importance of self-care for academics. It is a call-to-arms for academics who’ve neglected themselves in the pursuit of their work and a critique of the neoliberal systems that demand this kind of self-neglect. It is a to-do list for rediscovering self-care and a reminder that resistance comes in many forms. It’s also a poem. Because why the heck not!

You can read it here, or contact me for a copy. And then forgive me for not posting. I’ve been doing some much needed self-care.

Care: A Reading List

There’s a piece of street art in my home town that says “The more I think about it, the bigger it gets”. I was reminded of it during a recent visit to Keele University when a conversation with colleagues turned to recreational reading. I always have a book on the go and I’ve written before about the importance of good reading for good academic writing, but the conversation at Keele made me realise how much my recreational reading overlaps with my professional interests, particularly my interest in care. And it’s not deliberate, it’s just that once you start thinking about care, you see it everywhere. The more you think about it, the bigger it gets.

Not everything I’ve read, however, has been good. I’ve read many books that, while undoubtedly cathartic for the author to write, should never have been published for general consumption. So I wanted to celebrate the good books. The books that are both beautifully written and true to the experiences of carers (both family & professional). The books that expand your mind and tear at your heart. The books that I regularly recommend to friends, strangers, students, and colleagues.

I hope to continue to add to this list over time, as I read new books and remember old ones, but I’d also welcome your suggestions. What’s the best thing you’ve read that explores the concept of care?

Five Days at Memorial by Sheri Fink

Home is Burning by Dan Marshall

Shtum by Jem Lester

The Girls from Corona del Mar by Rufi Thorpe

Cutting for Stone by Abraham Verghese

Bettyville by George Hodgman

The Spare Room by Helen Garner

The Unspeakable by Meghan Daum

 

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.

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!

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.

Still Alice

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.