Why do Family Carers deserve our attention?
By Marina Dillon - Psychologist
Family Carers Ireland defines a family carer as ‘someone who is providing an ongoing significant level of care to a person who is in need of that care in the home due to illness, disability or frailty’. Family carers may undertake practical tasks, provide personal care, physical support and/or emotional support. Behind every cancer or dementia diagnosis, or child with special needs for example is most often a family carer. According to the Central Statistics Office, 1-in every 8 Irish people aged 15 and over provides care, with that figure expected to increase to 1-in-5 by 2030. Recent data shows that a little over half a million people in Ireland provide regular unpaid care. It is worth noting that over a quarter of a million carers are juggling their work alongside a caring role which means they are balancing two very demanding roles in their lives, with minimal breaks between either.
Respite care is often regarded as the most important form of support to alleviate caregiving burden and stress, providing family carers with a break from their usual caring duties which helps them to continue providing the support that they give. Without respite, family carers could face serious health and social risks due to the stress associated with continuous caregiving. However, access to respite remains problematic.
Another major issue is that many people do not consider themselves carers and, therefore, do not seek support; they may prefer to identify primarily as a parent, spouse or partner, for example than as a carer. Plus, as the transition into a caring role can be a gradual process, they may not recognise the changing nature of their relationship with the person they support. According to Eurocarers, the European Association working for Carers, ‘early identification and support, along with specific preventive measures, are essential to maintain family carers’ health and wellbeing, prevent negative health outcomes and avoid creating a vicious circle where family carers themselves become unwell and in need of care’. Access to emotional support for carers, therefore, should be promoted.
Additionally, for many families, taking on caring responsibilities results in long-term financial hardship, as years spent on a low income or years out of the workforce means family carers cannot repay debt, contribute to a pension or save money. Those who do manage to remain in employment are likely to see their working lives adversely affected by having to reduce their hours of work and/or sacrifice promotion and career opportunities.
On a personal note, I myself was a family carer for many years and found the role to be a highly rewarding and enriching experience, but not without its challenges. Professionally-speaking also, I have provided psychoeducational support and ran therapy groups for people with dementia and their carers. I have huge admiration and respect for family carers. In my view, they are the backbone of our society (saving the State an estimated €10 billion annually!) our ‘hidden heroes’ who deserve our full support.
Sadly, however, family carers can often become engulfed by competing demands, including working and caring, and as a result, may overlook their own needs and may not seek support. Additionally, the stigma associated with certain conditions can also prevent family carers from accessing support, leaving them socially isolated and unsupported. We also know that the diagnosis of the person being cared for can have an impact on carer’s mental health, along with the dependency level of the person being cared for; this combined with lack of supports can, ultimately, lead to caregiving burnout.
The Covid-19 pandemic has presented additional challenges for family carers, such as, fears of catching the virus, coping and isolation. According to a recent study by Family Carers Ireland ‘the withdrawal of supports such as homecare, respite, personal assistance hours and residential care during the pandemic lockdown has forced many family carers to care alone, around the clock and without the support of extended family or friends’.
Considering the social, financial and psychological challenges facing family carers, self-care should be prioritised, the need to look after your own physical and mental health, difficult as that may be, given the demanding nature of the role. It is equally important that family carers are informed about their entitlements and available supports bearing in mind that different support may be needed at different stages of the caring experience.
How best to avail of emotional support? Seeing as family carers may find it difficult to attend face-to-face therapy, having to find someone else to provide care in their absence, or due to other commitments like work and/or other caring and family responsibilities, they may find it a lot more convenient and less stressful to attend online. Teletherapy can facilitate family carers who wish to attend for emotional support, with research showing that online therapy can be as effective as in-person sessions