Defining the act of Caring
The 2011 Census represented only the second time when questions regarding Carers were included in an effort to capture statistics on how many people look after someone with a disability or illness on an unpaid basis in Australia. Everyday tasks or actions considered “assistance” or support given by a carer were listed in the Census as a means to help classify a carer. Accordingly, a carer role involves:
Access Economics (based on the 2006 Census) estimated that over 1 in 8 Australians (or 2.87 million people) were providing informal care of the above type. This represents 13.1% of Australia’s population. Of these, around 10% were classed as carers of people with mental health issues.
These statistics, whilst noteworthy, only reflect those who have recognised and identified their role as that of a carer. Accordingly, it is reasonable to expect that there are potentially far more carers in Australia than suggested by statistics.
Recognising hidden carers-Challenges in identifying them!
Carers doing tasks seen as upholding normal family responsibilities: There exists a large group of people who undertake some or all of the above listed activities and other “caring” activities but who do NOT recognise or identify themselves as carers. They are “hidden carers” by the fundamental notion that they carry on all or most of the work of a carer without interpreting these activities as acts of caring and support.
Carers –Caring as an act of unconditional love: Hidden carers provide care and support without recognising it as such because in many instances they are caring for a parent, child, sibling, or a family member where such care is seen as a normal responsibility a family member would undertake for another family member as an act of unconditional love and support, or as part of their role as a family member.
Carers overlooked because the ‘caring’ does not occur as society would expect: According to Smyth et al. (2011) it is common among hidden carers to not identify as carers because of the nature of the relationship between consumer and carer and the expectations of society surrounding care-giving in these circumstances. For instance, it is common for adults to be associated with providing care to other adults and children.In comparison, it is not seen as normal for young people to be care-givers, but rather only care recipients. However, children of people living with a mental illness may in fact provide significant levels of support to their parents and siblings while never identifying themselves as performing a carer’s role, due to a lack of understanding of their parent’s condition. Another example is when care or support is provided outside of the family context, for example, between friends or work colleagues, particularly between men, who are often not expected to fill a ‘caring’ role.
Carers providing different forms and levels of support beyond expectations of society: The experience of caring varies according to the form or type of care (such as the examples listed in the Census) and the extent of care (that is, the amount of support or care given to the ‘consumer’ - the person who requires care) which can make some forms of caring difficult to recognise. For instance, Smyth, Blaxland, and Cass (2011), have suggested that some individuals may only provide emotional rather than physical assistance to a consumer, however such degrees of care-giving are still sufficient to deem the individual a carer. This is consistent with other research (Aldridge & Becker, 1993, 1999; Robson, 2004) which has shown that there are different levels of care, such as care of a ‘casual’, ‘regular’ or ‘full time’ nature.
Carers concealed due to consumer illness being unrecognised: Especially when dealing with someone living with an undiagnosed and perhaps unrecognised mental health issue, a person may gradually find themselves needing to devote an increasing amount of time to providing emotional or physical assistance to a relative, partner or friend, without recognising fully that this is happening, or why.
In cases when the consumer’s illness remains unrecognised, for example, the person is often supported and assisted by family and friends to help them in their daily lives. In such circumstances naturally these “hidden consumers”, will tend to be supported by hidden carers. Naturally, if carers are not aware of the true nature of of their loved one’s condition this can also mean that providing support may be more difficult and/or less effective than it could be. Such carers can continue to remain unrecognised and unrealised even after the formal diagnosis of the consumer if they do not associate the support they provide with the condition of the consumer.
Hidden carers – ready to be found?
Whilst Smyth et al (Smyth et al 2011) has argued that caring is associated with familial frameworks and responsibilities, and that in some instances people seek anonymity for fear of scrutiny by others, Robson (2004) indicates there are advantages and disadvantages to identifying as a carer. The ‘carer’ label is seen as restrictive or inappropriate by many ‘carers’. A positive aspect of identifying as a carer is that it can provide recognition, validation, peer support and, most importantly, the basis for accessing support and a broad range of social services. In particular, the act of caring can affect the mental condition of carers, due to the ponderous responsibility associated with supporting those that need care (Aldridge and Becker, 1994).Hidden carers, however, will be unaware of the support services provided by a wide range of organisations which may help ease some of their burden.
ARAFMI is in the process of developing a questionnaire to assist people in helping to identify if they might be hidden carers which will be published in next month’s edition of Mind Reader. If you think that you might be a hidden carer and would like to know more about available services and support networks, please contact ARAFMIon (02) 9332 0700 (1 800 655 198 in regional areas) or via our web page at www.arafmi.org