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.
policy
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.
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.
Lifting & Leaning
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:
- 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.
- 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.
- 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.
- 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.
Research That cares 