Coping With Care: The Hidden Crisis Facing Unpaid Carers
Unpaid carers have faced increased pressures during the pandemic
Millions of unpaid carers were left without respite or support during the pandemic – to the detriment of their health and wellbeing.
At the end of the festive season, as most of us return from a well-earned break, an estimated 13.6 million families will have been helping a loved one to eat, get dressed and washed and perform the everyday tasks the rest of us take for granted.
Often behind closed doors, this unofficial workforce provide millions of hours of unpaid care each year, easing the burden on a chronically overstretched social care system.
Care comes in many forms. For some, it’s helping a family member or friend do the shopping or clean the house, while others provide round-the-clock care for loved ones with complex conditions. With an ageing population, the number of people being cared for by relatives has been steadily increasing, and with even the most basic of support services removed during the pandemic, the pressures on those bearing the burden of care have brought many close to breaking point.
Like millions of people across the country, I have seen these pressures personally. Diagnosed with dementia four years ago, my mum has become increasingly reliant on my dad to provide care for her. Aged just 64 when she was diagnosed, the isolation of the pandemic brought a noticeable deterioration in her condition, when access to support and advice became non-existent.
On bad days, our family home where my parents have lived for almost 40 years becomes a maze to her. On the good days, lucidity provides a terrible reminder of the reality of her condition. Being imprisoned at home during the pandemic, with no respite or prospect of a friendly face to provide a distraction, made those months even more unbearable.
With a diagnosis and a prescription, the NHS team that had once provided occasional check-ups discharged her from their care during the pandemic. GP appointments became a frustrating ordeal, with some refusing to let my father speak on her behalf because of "safeguarding" or social distancing rules. Our efforts to recruit someone to help with meals and cleaning were put on permanent hold.
It is an experience which will be all too familiar to households across the country. As the pandemic took grip, support services and opportunities for respite almost vanished, putting additional strain on families who provide care.
Joe Levenson, executive director for policy and external affairs at Carers Trust, told The House that Covid had "exacerbated" an already worrying situation.
"Even before the pandemic, many unpaid carers were struggling without the support they needed. They weren’t getting a break. Many were finding it tough financially, they had had to give up work, or incurred extra costs because of their care responsibilities," he said.
"Then the pandemic absolutely exacerbated what was already a pretty serious and worrying situation.
"Many haven’t been able to access the support they were able to previously, and we know many people have become unpaid carers for the first time, either because of the pandemic, or because they find a family member or friend requires additional care."
The pandemic has brought the crisis in social care to the forefront of the political agenda, but in reality it is a system which has been stretched to near-breaking point for years. Deadlines for a plan to deal with social care came and went and despite recognition by ministers that the system would fall apart without the devotion of unpaid carers, the resumption of even basic services has been sluggish.
For older carers who may have their own health conditions or lack a strong support network, the risks of catching Covid and leaving their loved one vulnerable and without support piled on further pressure. Family and friends who may previously have been able to provide care and respite were often unable to visit.
Stuck hundreds of miles away from my own parents, I could only continue with our daily phone calls which I hoped would help break up the day and provide a sense of normality – talking through the day’s news or what my childhood friends were doing. But even in those conversations, the change was noticeable. School friends who had all-but lived in our house during weekends and summer holidays less than a decade ago were disappearing behind the fog – the pauses when their names were mentioned becoming ever longer.
Like many others, I lived in near-constant terror that every phone call from an unknown number was the one to tell me that my dad had been taken into hospital and mum was now alone and without support.
According to data from the Alzheimer’s Society, my family’s situation fits closely with the experience of others; a recent survey found 76 per cent of carers said their responsibilities had increased during the pandemic because of worsening symptoms.
Labour MP Debbie Abrahams, who co-chairs the all-party group on dementia, told The House she had heard heart-breaking stories about the "considerable toll" the pandemic has had on unpaid carers.
"Many carers found that their caring responsibilities increased during lockdown, with vital support services, such as respite breaks, taken away from them – leaving them struggling to care round the clock for their loved ones, exhausted and ‘burnt out’ with nowhere else to turn," she said.
"With a high number of staff vacancies and years of chronic underfunding, the social care system is on the verge of collapse."
The increasing burden on carers is not limited to those with Alzheimer’s or other age-related conditions. Those caring for young children with special requirements faced the closure of schools or the removal of care assistants during the height of the pandemic. Others, sometimes described as "sandwich carers", were left looking after both children and parents with complex needs.
Sally Knowles, a 36-year-old marketing executive from Yorkshire, was the sole carer for her autistic daughter and elderly father who has dementia and was recovering from kidney cancer when the pandemic began.
"My daughter lost all the support she had been receiving before, and then we were hit with my father’s illnesses, so it felt unbearable at times. You can’t help but blame yourself for not being able to give them what they need, but at the same time, there is only so much one person can do," she said.
"Our finances suffered, their health suffered, and so did mine.
"There is a growing expectation that I should be going back to the office, but that is just not feasible when the other support we had before is still not back up and running."
A recent study by Carers UK found 72 per cent of carers reported not having a break at all since the pandemic began, often leading to a deterioration in the mental and physical health of those already bearing the burden of caring for their loved ones. My own father would fall into the other 28 per cent. His respite equated to a single round of golf with a friend. It was the only break he had in more than two years.
"Many carers were running on empty before the pandemic and that has just been exacerbated," Levenson says. "Being an unpaid carer can be very rewarding but can be very challenging and very difficult. Unpaid carers often do pay the price in terms of the impact on their physical and mental health and that has only been exacerbated by the pandemic, both because the pressures of caring have increased and the support that people can access has diminished."
While the recently announced social care white paper provides some indication the government has recognised the scale of the problem, the already controversial measures are not expected to come into force until 2023. Levenson says the plans contain some welcome steps but lack enough investment to show ministers will put their "money where their mouth is" on meeting their ambitions.
"We know there are millions of unpaid carers who are going without support. We know that many of them are unpaid carers by default because of a lack of caring support available to the people they are providing unpaid care for. And we are really concerned that we’re not learning from the mistakes of the past, and instead we are just storing up even greater problems for the future."
A Department of Health spokesperson said the recent social care white paper had delivered £25 million in support for unpaid carers, adding: "Unpaid carers more than ever demonstrated unwavering dedication through the pandemic and we are committed to supporting them."
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