Victoria’s royal commission into mental health today turns its attention to the families and carers of people living with mental illness.
An estimated 2.8 million Australians provide practical day-to-day and emotional support for someone they care about. Of those informal carers, around 240,000, or 8.6%, are looking after someone with a mental illness.
And this number is likely an underestimate. Carers often support loved ones with multiple difficulties. So while they may report looking after someone with a physical illness, this person could be experiencing mental health challenges, too.
And, people providing care and support for someone with a mental illness don’t always recognise themselves as “carers”. They are likely to view their role more simply as that of a partner, parent, sibling, flatmate or friend.
We’ve been working to better understand the needs of people who provide care and support to the one million Australians who experience depression each year, as well as those who provide support to the 65,000 Australians who attempt suicide.
The demands placed on these carers can be constant and overwhelming. We urgently need to better support the invisible work family and friends do every day in caring for Australians living with mental illness.
The impact of caring
As the largest non-clinical workforce we have for Australians experiencing mental illness, carers provide human and economic returns to the community every day.
It was recently estimated that mental health carers save the Australian government in excess of A$13 billion every year. But this group is often unsupported and unpaid (with the exception of a Centrelink carer allowance, in some cases).
The practical, physical, economic and emotional demands of being a carer can be enormous.Kylli Kittus/Unsplash
Informal carers of people with mental illness might assist their loved ones to manage their illness, for example by identifying symptoms, working out symptom management strategies, and organising appointments and medications for them.
They will often provide practical assistance, for example by taking on more household or financial responsibilities. Finally, they provide ongoing emotional support, such as being available to listen and letting the person know they are loved.
Research has shown carers often report high emotional distress, challenges with their relationships, engage in fewer social activities, feel lonely and isolated, and have fewer education and employment opportunities.
Caring has also been associated with immediate risk of mental health problems, with carers consistently reporting levels of psychological distress significantly higher than the overall Australian population.
The case for prevention
Getting people to identify themselves as “carers” and take time out from their caring role to prioritise their own well-being is an ongoing challenge.
Ensuring programs are available in all communities that are fit-for-purpose and cost effective is another challenge.
A survey released last month by the Butterfly Foundation suggested carers recognised there were impacts on their mental health. But they often didn’t seek support, citing a lack of time, a lack of knowledge about available supports and the cost associated among the reasons why.
There have been increasing calls for national investment in the development of prevention programs that address the specific needs of those who care for someone with mental illness, regardless of whether they see their role as a traditional caring one or not.
National charities like SANE Australia have been working to engage and support those caring for someone with complex mental illness. The Butterfly Foundation recently dedicated their annual MAYDAYS awareness and advocacy campaign to carers of people with an eating disorder.
We’ve been involved in the national roll out of a program called Partners in Depression, a six-week group program designed to support carers of people with depression. Participants learn about depression and its treatment and how to provide positive support to their loved ones. There is also significant focus on the importance of looking after their own physical and mental health, and reaching out early if they need support.
Reports from participants tell us this approach can reduce psychological distress, and help facilitate improvements in well-being and relationships.
The increasing availability of digital and e-health programs in treating mental illness and improving mental health provides an opportunity to think differently about services provided to families, friends and carers.
A call to action
People who love, live with and care for someone with a mental illness need timely and equitable access to interventions that enhance their well-being and prevent the onset of mental health problems.
We need a national agenda that recognises the rights of those who care for someone affected by mental illness not to have their own mental health and well-being compromised because of the vital caring role they play.
The Victorian royal commission, as well as the national productivity commission inquiry into mental health, provide an opportunity to recognise the important role carers play in our mental health service system, the right of those in caring roles to be involved in service delivery, and importantly, the right of carers to have their own mental health and well-being supported.
Whether supports are provided online, face-to-face, by NGOs, through primary care or via peers, the time for coordinated, available and evidence-based responses is now.
If this article has raised issues for you or you’re concerned about someone you know, call Lifeline on 13 11 14.
Jaelea Skehan receives grant funding from a range of government and philanthropic foundations.
Sally Fitzpatrick receives grant funding from a range of philanthropic and government organisations.
Authors: Jaelea Skehan, Conjoint Teaching Fellow in the School of Medicine and Public Health, University of Newcastle