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.
aged care
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.
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.
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.
Powerful Ageing
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!
Research That cares 