Caring for the carers

National Carers Week is a time to think about the unpaid work done by millions caring for loved ones with mental ill health and how we can support them

Dr Anneliese Spiteri-StainesAssociate Professor David RoseAmaya Alvarez

Published 16 October 2023

National Carers Week is a time we acknowledge the important but often unobserved, unpaid work of care done by 2.65 million Australians who provide support to family members or friends.

When you think of caring work, you likely think of those supporting loved ones with physical disabilities, but in addition, much support is needed and provided by carers of people experiencing mental ill health.

Around 240,000 Australians care for someone with mental ill health. Picture: Mindframe

Up to 43 per cent of Australian adults experience a mental health condition in their life, and approximately 240,000 Australians care for someone with mental ill health.

The Royal Commission into the Victorian Mental Health System found long-term under-funding of the mental health system and an over-reliance on informal supports to fill the gaps, with consequences for those experiencing mental ill health, and their families and carers.

Mental illness not only refers to a clinically diagnosable disorder that significantly impacts a person’s life, including their emotional and social abilities, and ability to work, but also mental distress – which is not always diagnosed.

Mental illness and distress impacts the person with the illness – but it also affects the people supporting them.

Providing care and support comes at a cost. For many informal family carers, their working lives can be disrupted, leading to financial consequences including long-term impacts like reduced superannuation.

Caring also impacts other relationships and the carer’s capacity to engage in the wider community, affecting both their psychological and financial well-being.

One Australian study surveyed 225 carers and reported that the caring role not only had an impact on the carers’ ability to work, but also their own health. A lack of employment leads to financial pressures which can then lead to isolation, stress and anxiety.

In the mental health space, the current systems can leave families and carers with only their own resources, in the complexity of everyday life, providing support.

Carers report that caring has an impact on their own health and ability to work. Picture: Getty Images

But carers should know that support exists.

One example is Tandem, the peak body for carers of people with mental health issues in Victoria.

Tandem administers a Carer Support Fund (CSF) funded by the Victorian State Government. Funds are distributed through Area Mental Health Services and the new Family and Carer led Centres now branded as Mental Health Connect centres, across Victoria.

This fund allocates up to $AU1000 per year for each mental health family carer, who can use the money to reduce some of the costs associated with caring and to support the carer’s own health and wellbeing.

But how do we know if this money is having the intended effect?

To answer this, we have formed a partnership between research staff from Tandem and the University of Melbourne to explore how the carer support fund is used, distributed and accessed, to assist with developing a new model to distribute the fund across Victoria.

The project is drawing on expertise from frontline staff in Area Mental Health Services and a Lived Experience Advisory Group.

We are gaining rich insights into what support mental health carers seek, how they are responded to and what this can reveal about the impacts of care and support.

The amount of $AU1000 may seem like a drop in the ocean when you consider the current costs of living. However, we’ve found that this contribution, modest as it is, does make some positive impacts on the lives of mental health families and carers.

Sometimes the fund helps someone obtain something most of us take as a basic necessity.

As one participant told us: “My mum got her first smart phone and data through the CSF in the midst of COVID. It gave her confidence to use tech and feel connected via WhatsAPP.”

The Carer Support Fund can provide carers with small things that have a big impact. Picture: Getty Images

Sometimes the funds are used to provide gifts or outings to carers.

“It really helps to know we are not alone,” said one carer after their monthly local bus trip to a nearby town, with lunch at the pub and a day of op-shopping.

Even a small gift can bring people joy, as reflected by a carer who received a Mother’s Day basket through the CSF: “This has made my day. It is the only thing I received for Mother’s Day.”

However, providing help to mental health carers can be a tricky job. We all probably know of people who don’t have space to think of themselves due to the responsibility of supporting someone else.

Our consultations with the project advisory group revealed that the needs of the person with mental health issues often get tangled up with the needs of the family carer. In one example, the CSF was used to buy a washing machine, but this went to the person being cared for and not the family carer.

But the needs of families are complicated and helping one member can often have positive impacts on others.

While the fund is aimed at health and wellbeing, cost of living pressures sees it often spent on an immediate need like an electricity bill or car registration. The Lived Experience Advisory Group shared that these requests for immediate needs are increasing.

The needs of families and carers are complicated and helping one member can often have positive impacts on others.

Our project aims to help ensure that the CSF is distributed as equitably as possible across Victoria and that family and mental health carers are aware that the fund is available to them.

As lived experience advisors tell us, the amounts may be small but they can make a significant difference to family and mental health carer wellbeing.

If you live in Victoria and care for someone experiencing mental ill health or mental distress, or know someone who does, look into the CSF and see whether it can do something for you.

Banner: Mindframe

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