With physical distancing demands and school closures, millions of families are buckling under the double pressure of rising care responsibilities for relatives with a disability or chronic illness, and the disappearance of the respite they rely on to keep going.
One in ten Australians provide care for a loved one, sustaining families and saving governments huge sums on care services.
Whether they care for a family member with a disability, a chronic or mental illness, or frailty due to old age, women are more likely to be carers than men; many children and teenagers also have care responsibilities.
These carers help their family members with a range of activities, including personal care such as showering and going to the toilet, administering medication, liaising with doctors and services, housekeeping, and emotional support.
The 2.65 million people caring for a family member face pressures on their work, incomes, health and wellbeing as they strive to care for their loved ones. They already score lower on wellbeing measures than any other group. The COVID-19 situation has intensified these pressures.
Taking a break is essential for their health, their ability to work, and their capacity to sustain their caring role. But during the pandemic, many opportunities for respite have all but disappeared.
Many carers now have extra responsibilities associated with the new vulnerabilities facing their loved ones. Some need to provide extra support for frail older parents or chronically ill family members advised to self-isolate during the pandemic. Many are providing extra support to family members with a mental illness whose symptoms have been triggered by the pandemic and social isolation measures.
With some schools closed and most children now learning at home, many parents find themselves caring for their children with disabilities during the hours when their children are normally at school. They must now support their children’s education as well as their other needs, with some also trying to keep up their work.
Many young carers—children under 18 with care responsibilities, who make up on average two children in each Australian classroom—will now find themselves trying to complete their schoolwork at home while they carry out their care responsibilities. For them, school is no longer respite from their care responsibilities.
The role of these carers is vital to sustaining the health and wellbeing of so many Australians during this time of emergency. But for many, their own needs are not being met, as their responsibilities grow and opportunities for respite disappear.
Respite comes in different forms. For many it is indirect, such as having a break while their child with a disability is at school, or in the case of young carers, having a break while they are at school.
For other carers, respite takes the form of specific services designed to support carers and the people they care for, to take a break. This can be in-home respite, where a care worker comes to the home to support the care recipient while the carer takes a break. It can also be group programs or activities outside the home in day care and other community centres, or overnight respite in an aged care facility while the carer takes a break.
It can also include a range of specially purposed social activities for carers. Some young carers, for example, access camps where they can take a break and spend time with other young carers sharing experiences and engaging in recreational activities.
With physical distancing mandatory, access to these forms of respite is limited or has been shut down. All forms of group respite activities for both care recipients and carers are prohibited within the lockdown provisions, and community centres are not available.
In-home respite is possible, with a professional care worker coming to the carer’s home while the carer takes a break, but families and care workers are concerned about exposure, with limited Personal Protective Equipment available. Respite in aged care facilities is also still available, but many facilities are choosing not to take in temporary placements on the grounds of risk.
What’s more, if they do receive respite, carers are limited in the activities they can engage in outside of the home while they take a break. Informal opportunities for respite, such as leisure activities and visits from friends and family, have also been severely reduced.
This lack of access to respite could have catastrophic impacts for some carers; on their health and wellbeing and their ability to maintain paid work. The limits on respite – and uncertainty about how long this will continue – heighten the risk of burnout for carers in unsustainable and unsupported caring arrangements. Ultimately some carers could reach breaking point, increasing the need for formal care services such as residential care, escalating costs to government. And of course, it imposes great personal, relational and financial costs on families.
We urgently need innovative and sustainable ways to provide carers with breaks from the caring role while preserving their health, wellbeing, and paid work during the COVID-19 situation and into the future.
Associate Professor Myra Hamilton is a Principal Research Fellow at the ARC Centre of Excellence in Population Ageing Research at the University of Sydney. The author would like to thank Carers NSW for their input into this piece.
Carers in need of a break or other support can contact the Carer Gateway on 1800 422 737 to discuss the range of services available.