What or who are 'carers' of people living with mental illness according to official definitions?
In the last issue, the role of ARAFMI’s (the Association of Friends and Family of the Mentally Ill) , as the peak carer organisation specifically set up by carers of people living with mental illness to support other carers facing challenges in their role, was explained. In this issue, the focus on mental health carers continues, to firstly explain “What is a carer?” more specifically the characteristics of a mental health carer, and how State and Federal Mental Health laws define them.
Definition of a Carer
A carer, may be a family member, friend, neighbour, or other community member who provides care and assistance to another person, often in regular and ongoing manner without receiving any recognised benefit or payments beyond a pension or something nominal in some cases. In fact a carer can be anyone providing regular ongoing care or support to others, where these “other” person(s) is someone disabled, a frail older person, suffering dementia, terminal illness, living with HIV/AIDS or has a chronic illness or experiences a mental illness,
In NSW there are 748, 000 people who are carers (Source: NSW Health). In more than half of these cases, carers provide support and assistance for at least 20 hours per week. Over 30% of carers have been in that role for at least 10 years and over 70% are women. Carrying the brunt of carer responsibility often means that carers generally have lower incomes as they are unlikely to be employed and in cases when they are, the work is often part time.
The NSW Carers Recognition Act 2005 defines a carer as an individual who provides ongoing care or assistance to a person in the target group, referred to in the Disability Services Act 1993 (defining a person with a mental illness or chronic illness or a person, because of frailty, requiring assistance to carry out everyday tasks. A designated service providers or persons providing care or assistance under a contract of service or as a volunteer is not considered a carer by the Acts definition. Notably, it’s not the relationship of a person to another (e.g. spouse, defacto, etc) that defines or classifies a carer role. It’s the act of providing care (in ongoing frequent support and care provision) is what essentially defines a carer.
The Mental Health Carer - unique characteristics
In simple terms, a mental health carer provides care and support to someone living with mental illness. It’s notable that the NSW Mental Health Act 2007 doesn’t actually define a mental health carer, BUT it does define a primary carer (which is a special recognition afforded to mental health carers who have been ‘nominated’ with regard to a particular mental health services consumer). This also gives some insight into who the government expects will be providing care and support to mental health services consumers and should be recognised in this role.
Although mental health carer share commonalities with other carer groups, having to deal with similar types of daily life issues of family, finances and maintaining their own well being, they are recognised as unique because of the additional stressors they have to face in their caring role. The nature of mental illness itself, with predominantly behavioural symptoms as opposed to clear physical ones, societal perception of the illness and the structure and delivery of mental health services, make mental health carers position different and unique to others carer groups.
Mental illness or disorders are generally characterised by anti social behaviours which may be sometimes frightening and occasionally dangerous to the person with the illness and (much less frequently) to people around them. Unlike physical illness, mental illness is much more difficult to diagnose. Despite a range of available pharmacological and therapeutic treatments, the course of the illness is unpredictable since the mentally ill person is often unaware that a problem exists, in periods of wellness and in periods of “un-wellness”. Therefore the mentally ill person often refuses treatment.
The carer of people who experience mental illness, potentially face emotional, physical and financial challenges. Many carers report chronic physical and emotional exhaustion, decreased income, stress, isolation, and feelings of grief and loss as a result of their role.
Research has indicated that carers of people who experience mental illness require ongoing support themselves, in the form of relevant information on coping strategies and general support, which often remain unmet. The need for psychotherapeutic support and counselling also exists among many carers.
However carers improve the quality of life of the person they care for and enable them to remain in the community. As well as the enormous social contribution, the economic value of caring is being increasingly recognised.
Are you a Carer? You may consider whether these definitions fit you, as everyone has a different experience of caring? You may have taken on this role suddenly or it may have happened gradually. Caring can last for a few weeks or for several years. It can occupy a few hours each week or 24 hours a day, if you are looking after someone experiencing a mental or physical illness, disability or frail aged who is unable to manage without your support.
Your caring may bethrough the provision of assistance with everyday type of activities such as, shopping, paying the bills, house work, personal care or meals. If you are providing this care to someone who is unable to look after themselves - then you are a Carer. You may still be their wife, partner, husband, friend, parent, son or daughter, this role has not changed - you are just adding something extra. Well done!
If you do find yourself in such a role, ARAFMI can offer you direct support through a range of services (information, education, advocacy and counselling) from its Branches in Hunter, Central Coast and Illawarra; or refer you to the appropriate local services funded through the state-wide Family and Carer Mental Health Program through its Information and Support Line on (02)9332 0700 or 1800 655 198.