Family carers having homicidal thoughts about their loved one with dementia is a “real and significant phenomenon” according to world-first Australian research, which reaffirms the profound pressures facing carers.
It was a note from a participant in her last study that prompted Dr Siobhan O’Dwyer to investigate homicidal thoughts among carers of people with dementia.
The earlier study had found that one in six family carers had seriously contemplated suicide in the past year and 20 per cent of those were likely to attempt suicide in the future.
A participant then sent an anonymous note:
“You’ve asked if I wanted to kill myself, but you didn’t ask if I wanted to kill the person I was caring for.”
That raised many questions and concerns, and ultimately provided the impetus for the latest study, said Dr O’Dwyer, from Griffith University’s Menzies Health Institute Queensland.
International research showed that up to 40 per cent of completed spousal homicide-suicides among older adults were perpetrated by someone caring for a partner with long-term illness or disability however the Australian research asked people about homicidal thoughts while they were caring, Dr O’Dwyer said.
“[This study] might give us a better indication for risk factors and how we might intervene to stop these sorts of deaths in the future,” she told Australian Ageing Agenda.
The research published this week in the journal Aging and Mental Health, which is among the first in the world to examine the issue, was based on interviews with 21 family carers of people living with dementia.
It found two carers reported having “active homicidal thoughts” while caring at home, while four others acknowledged having “passive death wishes” for the person with dementia.
Of those who reported homicidal thoughts, the first carer said her thoughts of homicide-suicide were relatively frequent and arose from physical and psychological fatigue and an unwillingness to place the person in residential care, while the second carer reported thoughts of homicide were a “once-off” that came after she was threatened by the care recipient and ultimately were the catalyst for placing the person in care.
The research noted that all six carers to report either homicidal thoughts or passive death wishes were female, which was inconsistent with the fact that the majority of homicides and homicide-suicides committed by older adults were perpetrated by men.
“What we think is happening is that women might be reporting more, but men are more likely to act, so I think particularly in the context of older men caring for wives with dementia, we really need to be checking in with them, asking how they’re going, listening to their answers, because if we wait for them to tell us they’re not coping it might be too late,” said Dr O’Dwyer.
Some 13 carers who had not contemplated homicide said they understood how other carers could, and they identified factors that could contribute to these thoughts – such as frustration, lack of support and a sense the carer role was never ending.
Highlighting carer burden
Dr O’Dwyer said that thoughts of homicide did not guarantee homicidal behaviour, but the fact that carers were experiencing these thoughts was reflective of a bigger problem in society.
“Carers are making a significant social contribution but much of the stress they experience stems directly from the lack of social, political and economic support. So it is things like the delays in dementia diagnosis, a lack of access to quality respite care, a lack of understanding from employers, challenges with negotiating the aged care system,” she said.
There was more work to be done in terms of agitating for social and political change to make caring a more recognised and valued role, and a more sustainable experience, she said.
Role for community services, aged care
The study highlighted the role for service providers and health providers in identifying and supporting carers contemplating homicide. Dr O’Dwyer acknowledged these were “difficult conversations” but said that frontline care workers such as community aged care staff needed to ask carers how they were coping and to “really listen to the answers.”
She added that it was important to recognise that violence was a crisis response:
“The vast majority of carers are kind, compassionate people doing amazing jobs in really difficult circumstances, and thoughts of homicide or abuse only really come out when the person has exhausted all their other coping mechanisms. There are lots of places along the way that we can be stepping in and talking to carers and helping them get support they need so it doesn’t get to this point.”
Asked of her plans for further research in the area, Dr O’Dwyer said that larger studies were now required, and ones that examined caring in different contexts.
“This is a small qualitative study; we can’t say what the rate of homicidal ideation is in the population as a whole but a large study would allow us to do that,” she said.
“We would also like to look across countries… If we start looking across carers we can get a better sense of the different cultural, political and economic factors that influence the caring experience and these sorts of negative outcomes.”
She said future research could also look across other caring groups. “We focused specifically on people with dementia, but I don’t think this is an isolated issue and people caring for partners with mental illness or children with disabilities might be experiencing very similar things.”
Lifeline: 13 11 14, Suicide Call Back Service: 1300 659 467