family carers

And the beat goes on

/ Siobhan O'Dwyer

The findings from my first collaboration with European colleagues were published this week. This is a significant milestone for me, because it’s exactly the kind of collaborative, international research I was pursuing when I packed up my life and moved to the UK just over a year ago. More importantly, however, it’s a significant contribution to a growing body of research on suicide and homicide risk in people caring for family members with dementia.

My previous research showed that 1 in 6 carers had contemplated suicide in the previous twelve months, that only half of them had ever told anyone they felt this way, and that 20% of them were likely to attempt suicide in the future. This research also found no difference in the rate of suicidal thinking experienced by carers supporting a person with dementia at home, carers supporting a person with dementia in a nursing home, and carers who had been recently bereaved. These were ground-breaking findings and they generated significant interest from the community, the media, playwrights, and other researchers. But there was still so much we needed to understand.

In particular, the research was cross-sectional, so we were only capturing suicidal thoughts at one point in time. Consequently, we didn’t know how thoughts of suicide changed over time and whether carers who thought about suicide after the person with dementia moved into care, or after they died, had also thought about it while caring at home.

This new research addresses that issue. The article has been published ‘open access’, which means you can read the entire thing here for free, but to summarise briefly:

  • The study followed almost 200 carers in the Netherlands for two years, none of whom had depression or anxiety at baseline
  • Over the 2 year period, 40% of carers developed depression and were assessed for thoughts of suicide
  • 12% reported thoughts of suicide, with one third of those reporting suicidal thoughts at multiple time points
  • Thoughts of suicide were seen in various patterns, including only before the person with dementia was admitted to a nursing home, before and after the person was admitted to a nursing home, only after the person was admitted to a nursing home, and after the person with dementia died.

These findings support my previous research and show the incredible toll that caring can take, particularly at key transition points such as institutionalisation and death.

What they also show is that thoughts of suicide are not unique to Australian carers, but rather appear to transcend social, cultural, and political boundaries. Although more research is required to understand how the health and social care policies of different countries might influence suicidal thinking, this is another important step toward understanding and preventing suicide-related thoughts and behaviours in family carers.

It is heartbreaking to do research that shows, time after time, how little the world cares about carers. They are the invisible scaffolding that holds up every part of our society and our communities would crumble without them. This research is only a small contribution to efforts to recognise and support the wonderful work of family carers, but, added to my other work and that of my colleagues around the world, I hope it is a meaningful one.

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As ever, nothing good is done alone. I am indebted to Dr Karlijn Joling, Professor Cees Hertogh, and Professor Hein van Hout, who conducted the research that provided data for this study. I am particularly grateful to Karlijn, who led the analysis of the data and was a joy to write with. Karlijn, Cees, and Hein share my passion for research that cares and I look forward to our continued collaborationsl

 

Kapow!

/ Siobhan O'Dwyer

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.

Love’s Not Enough

/ Siobhan O'Dwyer

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.