How does identifying as a carer impact a person’s wellbeing?
By Prudence Granger | 15 June 2023
In relation to service systems and supports, the question of carer wellbeing tends to be synonymous with the process of identifying as a carer. However, my experience has taught me that for many people this identification process can end up doing more harm than good. While there are supposed systems and supports in place once you identify yourself as a carer, the reality is often that these systems are not particularly accessible, sometimes not as supportive as one would hope, and regularly come with a high administrative burden. Furthermore, taking on this identity can be socially isolating and increase carers’ already heavy load.
In a recent webinar event for the Carer Knowledge Exchange (CKE) I participated in a breakout room session where the benefits of identifying as a carer were discussed. Amidst this group were a cross-section of people that included carers, policy makers, and researchers. The conversation was very diverse and highlighted the realities of identifying as a carer.
Initially, what I found interesting about this conversation was that most of the people I was conversing with had “identified as a carer,” yet still had difficulty labelling themselves as such. The common assertion was that they were merely, husbands, daughters, siblings etc. just doing what is right: the familial obligation to provide support often negating the identification as a ‘carer’. Indeed, in my own care journey, it took me a long time to recognise myself as a carer, as I thought I was merely helping my mum look after my dad.
There are several reasons why people initially struggle to self-identify as a carer, one being that within the formal system, as well as society more broadly, generally only one person in a household or family is truly considered to be the ‘carer’. This tendency to prioritise a primary carer role minimises the value of the support that any other individual is giving on an informal basis and disguises the collective effort that it takes to provide care. Caring on any level is difficult, regardless of whether you a primary, secondary, or respite carer, or whether you are providing physical or emotional care. This is still valid caring.
There are many reasons why governmental support isn’t meeting carers’ needs, which is an issue I’ve discussed in a previous blog post. However, from a financial support perspective, the fact that only one individual can be recognised as a carer is harming the capacity for people to genuinely share caring roles – something which would reduce carer burden and enable carers to balance work/life/care more effectively. It is also creating limitations in how carers are viewed and supported from a societal perspective. The caring load can be shared equally among more than one person. If this was recognised, the carer identification process may become more appealing and caring responsibilities more flexible. This inability to recognise multiple carers is currently alienating an entire group of people from the caring role and identity.
For example, my mother and I share the responsibility of my father’s care, which is difficult from an identification perspective, because often only one person in a household is recognised as the carer. However, the reality is that it is a job that involves a lot of people to perform effectively. What was interesting to learn during the CKE webinar on this exact topic, was that when people officially identified as a carer, they frequently lost any support they were previously receiving from other family members, as it was now seen as their sole duty. This is where identification can be damaging.
Another reason why many carers are slow to identify, or perhaps never do, is due to a misunderstanding of what a carer is. There is more work to be done around defining the caring role and raising awareness of this often-hidden burden. A lot of people view a carer as a professional, for example, a nurse, or support worker, failing to understand that if someone is paid for the services they provide, they do not meet the definition of a ‘carer’. The key difference being that professionals are paid for their time, whereas carers are not.
I can’t help but reflect on my own process of identification as a ‘carer’. I didn’t realise this was what my role was until I became an Advocate for Dementia Australia. Before becoming an Advocate, I saw my role as helping my mum with the growing support my dad needed. It was something that felt natural and necessary, an obligation to my family, rather than a role that could be defined. Once I stepped into advocacy work, others were regularly referring to me as a carer, although at this stage I didn’t fully identify with the role. However, during the COVID-19 lockdown period, I started to really recognise my role as a carer, as my care responsibilities increased and became almost inescapable.
So, if many people see informal care as simply a familial duty or obligation; they are not considered a full-time or primary carer by service systems; and, there is a common misconception about what being a carer involves, it is easy to understand why so many people don’t relate to or identify with the ‘carer’ role.
Where to from here?
How can we shift the stigma associated with the word carer? How can we make this identity more inclusive and representative of the diversity of care? How can we make this identity more appealing? Being a carer is such an important role and identifying as such should not take away from any support people are currently receiving; it should not make people feel isolated; and it should not come with an additional burden for those who are already giving so much. The reality is, we all provide care in some way, at some stage in our life. The distinction lies in how much your caring consumes your day-to-day life. As one gentleman so succinctly commented in our webinar; ‘Caring is just a part of humanity, where does it start and end?’.
Please note: This blog is written from my personal perspective as a carer, this to an extent, limits my world view to my own life experiences and family dynamics. During discussion of this topic in our webinar there was a lot of complexity discussed in reference to different dynamics in Indigenous and cultural households and communities. I am unable to accurately reflect these experiences in this blog, however, I endeavour to have some guest bloggers to share from their experience in the future. In the meantime, below are some resources from our Research Library which speak more to the Indigenous and culturally diverse experience as a carer in Australia:
If you or someone you are with is in immediate danger, please call 000. If you feel upset or are in distress, you can contact Lifeline, 24 hours a day, 7 days a week by phoning 13 11 14 or texting 0477 13 11 14.