Mental health carers in NSW
Support for many people living with mental illness is provided by mental health care givers or carers. These are family members or friends that provide help with activities, emotional support or advocacy. The emotional and practical support provided by mental health carers is an essential part of helping people living with a mental health condition to recover and live well in the community.
The most recent survey on mental health carers was completed by the Australian Bureau of Statistics (ABS) in 2015. According to the ABS Survey of Disability, Ageing and Carers (SDAC), there were 54,000 mental health carers* in 2015, making up 25 per cent of total primary carers** in NSW. This snapshot provides an insight into the characteristics of mental health carers and highlights the central role they play, specifically looking at:
• who they are
• their experiences as carers, and
• the support they receive.
The typical caregiver for a person living with a mental health condition is female, aged 35 to 54 years, Australian born, lives on a Government pension or allowance and cares for someone with a profound or severe disability.
Trends from 2012 to 2015 show an increase in male carers (37 per cent), coupled with a growth in older carers from at least 55 years old. In addition, while most mental health carers are still dependent on a Government pension or allowance as their primary source of income, there has been a significant increase numbers of mental health carers on a wage or salary.
Experiences as a carer
The role of a mental health carer can be challenging and often has a huge impact on the care giver’s life, including their relationships and work opportunities. While most (approximately 60 per cent) mental health carers experience low/moderate distress levels, it is concerning that about 1 in 3 mental health carers (30 per cent)*** live with high or very high distress levels. Because of this, mental health carers can often be at risk of developing their own mental health problems.
In addition to this, significant proportion of mental health carers indicated they do not feel satisfied with the caring role, and the percentage reporting this has increased from 57 per cent in 2012 to 63.5 per cent in 2015 (Figure 2).
Support for carers
A range of services exists to support family members, friends, and carers of people living with a mental health condition. These services may provide practical, financial, and emotional support such as respite care, training, and peer support (support groups).
Although around 1 in 3 mental health carers reported that they had not received assistance from organised services in the last six months, of those who did receive services, 1 in 3 were satisfied with the quality of assistance received from organised services. This is an improvement from 2012 where only 1 in 5 were satisfied.
In addition, nearly 1 in 4 (26.2 per cent) mental health caregivers were satisfied with the range of organised services to primary carers, an increase of 1.5 per cent from 24.7per cent in 2012.
Feeling burdened and stressed by the caring role can have an overwhelming impact on the caregivers life. About 43 per cent of mental health carers reported they felt weary or lacked energy due to the caring role, and this proportion has increased significantly from 29.4 per cent in 2012.
Respite care helps carers find a balance between caring for the person with a mental health condition and caring for themselves, by giving carers the opportunity of a break from their usual caring role and duties. Figure 3 shows that most mental health carers in NSW have never used respite care in either 2012 (78.7 per cent) or 2015 (70.9 per cent). Understanding the reasons why carers are not using these services is important to ensure that people are not missing out on the services they may want and need.
Most people receiving respite care in 2015 reported they had a back-up carer, someone to replace their role (69 per cent), to assist them. This proportion has increased from 59.3 per cent in 2012. More than a quarter (26 per cent) reported they did not have a back-up carer.
Having financial support can reduce the burden of the caregiving role. In NSW, most mental health carers did not receive a government carers payment (59 per cent). Of these, 31 per cent were not eligible and 28 per cent had not looked into which payments they might be eligible for. Carers NSW have indicated that ‘many people in caring roles do not identify as carers and as such are often not linked to services and supports that can assist them’. These people are often referred to as ‘hidden carers’.
*These are primary carers who cares for someone living with mental illness.
**A primary carer is the person who provides the most informal assistance to a person with disability with one or more of the core activities of mobility, self-care and communication. In SDAC, primary carer information was collected for people aged 15 years and over, and excludes primary carers who care for someone who does not live with them.
***This rate is higher than all primary carers (not just mental health carers) who experience high or very high distress levels (27 per cent).
Data is based on ABS’ Survey of Disability, Ageing and Carers 2012 and 2015. For a full description of the data and exclusions please see ABS Explanatory Notes, Cat:4430.0.