Last year the lovely folks at Australian Ageing Agenda asked me to write an Opinion piece about family care. As well as advocating for carers, I used the opportunity to confess to the world my deep and abiding love for the Batman films. After originally appearing in the AAA magazine, the piece has now been posted online and you can read all about the wonderful work that carers do (and my shameful secret!) here.
ageing
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.
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.
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.
Caring ‘Til It Hurts
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.
Research That cares 