Unconditional: An unflinching documentary about Canberra’s carers
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Becoming a lifelong carer is something that can happen in a second. Sometimes, it happens across a number of years. Always, it is life-altering.
But however it happens, becoming a lifelong carer is something that only other lifelong carers can truly understand. To shed light on this uniquely challenging and at times very raw experience, Charles Sturt University PhD student and documentary maker Dalanglin Dkhar, herself a lifelong carer for her young son, has directed Unconditional, a documentary that follows the lives and routines of four diverse lifelong carers in Canberra.
We spoke with Dalanglin on the eve of the documentary’s premier last month about her motivations, the process of curating such personal stories and why we need to care more about our community’s carers.
What led you to create Unconditional?
In a large way, this project was led by a strong motivation to share with the community we live in, who and what a carer is.
So at the start of my PhD research for an authentic and intimate description of the lived experience of a carer, I began looking at combining my professional background in documentary filmmaking and research.
Secondly, recognition and awareness of carers at the community and family level is significantly lacking. This stems from my own lived experience and of many in my carer community where we see again and again that when we step beyond the margins of the carer community, there is complete ignorance by the wider community, health care professionals, educational institutions, workplaces about this role and what it encompasses for the individual carer.
A lack of understanding of the caring experience has been seen by research to further risk cementing the social isolation, mental health decline and well-being of the carer.
How do you define a lifelong carer?
The term lifelong carer is someone who is as an unpaid primary carer, in most cases, a family member, whose journey begins when the person they care for receives a diagnosis of disability, chronic condition, mental or terminal illness and for whom the caring responsibility continues from that moment on for the rest of their life.
Why is it so important to shine a light on these people’s lives?
Having the general community understand the reality of a carer’s experiences, and all its diverse challenges is important on a few levels.
After dealing with the shock of the diagnosis of their loved one at birth or at a later age, very often the parent, grandparent or friend realizes that there are very few acceptable care options to which they can turn, to provide a satisfactory level of care for their loved one (Spicer, 2007).
They are confronted with a very sudden start into the carer’s role where there is no training manual.
In most instances when there is a diagnosis of disability, the families become the primary source of immediate care. When the disability is something that is lifelong, it is often expected by society that families will make a lifelong commitment and provide the care and support that their loved one requires.
Caring roles can differ with the nature of the disability or illness regarding the duration and complexity they bring. This runs parallel for the carer with their other responsibility of being a parent, spouse, sibling, relative, friend or foster carer.
If for instance, they are caring for children, as the children grow into adulthood, the coordination of their support and care lies with their parents, and in some cases, housing options as well, which lead to parents committing to a lifelong caring role (Namkung, Song, Greenberg, Mailick, & Floyd, 2015).
Due to the exhaustive and continuous nature of this role, and full commitment to the person they care for, carers have little time or energy to advocate for their own needs. Being time-poor and exhausted, most carers sacrifice social activities and community events.
When a carer is providing beyond 20 hours of care per week, a study found that there was deterioration in both physical and mental health in both the longer and shorter terms (Kenny et al., 2014). Time, worry and cost were the three fundamental findings from a study that looked at lived experiences of carers of those with chronic illness (Jowsey et al., 2016).
Due to the multiple roles and responsibilities, carers are always short of time to accomplish all the tasks needed to be completed in a day. This in turn creates stress and anxiety and thereby leading to burnout. So there is a real cost to caring that society does not know of.
What would you like the community to know about being a lifelong carer?
In my research, I have found that lifelong carers have the following common factors in their profile and it is important that as a community, we see and acknowledge them and their contribution. Lifelong carers are –
- Mostly females, with a ratio of 7 in 10 (ABS, 2019).
- Majority are carers of people with autism, intellectual disabilities and mental health issues as primary conditions and are more likely to be the parents (Carers ACT & Network, 2021).
- The people they care for are more likely to have co-morbidities like depression, anxiety, ADHD, OCD, PDA and chronic pain.
- They have conflicting responsibilities between their carer role and caring for the rest of their other children and family members (Spicer, 2007).
- For the majority of carers, they took up caring from a deep sense of family responsibility (70.1% of all primary carers) followed by emotional obligation (46.6%) and ability to provide better care than anybody else (46.4%) (ABS, 2019).
- Provide care by assisting with mobility, self-care, healthcare, correspondence, food preparation, learning and communication, household work, transport, cognitive and emotional support (ABS, 2019).
- These carers are less able to be part of the work force (58.8% participation) compared to other carers (76.6% participation) and non-carers (81.5% participation) (ABS, 2019).
- 37.4% of primary carers have a disability, double that of non-carers at 15.3%.(ABS, 2019).
- Their caring duties run from approximately 35.2 hours per week to more than 60 hours per week (Deloitte Australia, 2020).
- Their wellbeing is found to decrease the longer they have been a carer (Centre for Change Governance et al., 2021).
What are you seeking to achieve with this documentary?
That it will open conversations and invite curiousity about the carer and hopefully lead to recognition, support and awareness of this silent and invisible workforce.
That by making the research findings accessible, through a documentary film, that it will foster a new understanding to a wider and diverse audience of the life of the carer.
That fellow carers will learn from each other, creating new awareness of the shared identity and challenges they experience.
That it will help government and non-government agencies, educational institutions, mental health agencies, clinicians, general practitioners, employment agencies and religious institutions to recognize the needs of the carer and what they require to be better supported in their role of caring.
And lastly, that the lived experience of the carer will inform an understanding for this growing, yet previously invisible community within Australian community and to help neighbours, work colleagues, extended family and friends to recognise the importance of the carer’s work and to become increasingly aware of how to walk alongside the carer and better understand their journey.
Photography: Plum Photography