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.