Most Caregivers Did Not Get Respite During Pandemic, UK Survey Says

Marta Figueiredo PhD avatar

by Marta Figueiredo PhD |

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Most unpaid caregivers in the U.K. have not had any breaks from their caregiving role during the COVID-19 pandemic, with nearly three-quarters reporting feeling exhausted, stressed, and anxious, according to a survey of more than 2,800 caregivers conducted by Carers UK.

During the pandemic, carers lost a mean of 25 hours of support from services or family and friends each month, and nearly two-thirds were worried about continuing to care without a break.

“Not only are the majority of carers (81%) providing more care than before the pandemic, while their responsibility has grown the support they used to rely on has reduced,” stated the survey report, titled “Breaks or Breakdown.”

“Carers have sacrificed their physical and mental health caring for loved ones over the course of this pandemic,” Helen Walker, chief executive of Carers UK, said in a press release on behalf of the six charities supporting Carers Week. These include Carers UK, MND Association, Age UK, Carers Trust, Oxfam GB, and Rethink Mental Illness.

Unpaid caregivers are “exhausted having cared around the clock, and do not know how they can continue without a break,” Walker added.

The survey report was recently shared during Carers Week 2021, an annual campaign to raise awareness of caring and highlight the challenges faced by unpaid carers across the U.K. It also helps people who do not consider themselves carers to get much-needed support.

Based on these findings, Carers Week charities are asking the U.K. government to provide an additional £1.2 billion (nearly $1.7 billion) in funding for respite care through an increase in direct payments by £50 (about $58) a week for unpaid carers who provide more than 50 hours of care weekly.

Such respite is expected to help carers take time off for their own health and well-being. Because some carers may not want to receive direct payments, the charities recommend that the equivalent funding be provided to local authorities to support local services for caregivers.

“Without the right support, the stress and challenges of the last year could lead to far more carers breaking down,” Walker said, adding that “it is essential that the Government ensures that carers … get a funded break.”

Jennifer Bedford, head of partnerships, education, and information for the MND Association, said that the association has developed “a new program of support for unpaid carers including online support groups and virtual information events, and continued to offer Carers Grants.”

“But charities can’t do this on their own,” Bedford said. “We need the Government to recognize the vital role of an unpaid carer and take action to increase funding for their much-needed breaks.”

Online survey respondents included 2,754 current carers and 96 former unpaid caregivers, who took the survey between April 8 and April 25. Most (71%) lived in England, 14% in Wales, 8% in Scotland, and 6% in Northern Ireland.

Most of the responders were women (79%) and cared for one person (73%), and one-third had been caring for a loved one for at least 15 years. Compared with U.K.’s carer population as a whole, respondents were more likely to be women and caring for a high number of hours every week.

Results showed that the hours of additional support dropped during the pandemic from a mean average of 38 hours to 13 hours a month, reflecting a mean loss of 25 hours of support per month.

A total of 44% of carers said they were already struggling to get the breaks they needed before the pandemic, a situation that worsened during the pandemic, with 72% of them reported having no respite at all.

Because they were worried about COVID-19 infection, 21% of carers said they chose not to take any breaks from caregiving.

Of those who did get a break, 37% used the time to exercise, 33% to complete practical tasks and chores such as housework, 26% to attend their own medical appointments, and 25% to catch up on sleep or to spend time with other family members and friends.

When asked how they would like to spend time away from caring, carers said that they would focus on their well-being (53%), physical health (52%), and social connections (50%).

In addition, nearly two-thirds (63%) of caregivers were unable to look after their own health and well-being during the COVID-19 pandemic, with 69% reporting poor mental health and 64% worse physical health.

Most carers said they feel exhausted (74%), stressed and anxious (71%), and lonely and isolated (65%). Almost two-thirds (63%) were worried about continuing to care without a break, and more than a third (35%) felt unable to manage their caring role.

Similar results were found for carers living in Wales, Scotland, and Northern Ireland.

The survey also showed that the pandemic affected working carers in a similar way to those not working, as 75% of working caregivers also said they were exhausted and 55% were overwhelmed by their caring role.

About 14% of carers reported to be confident that support they relied on before the pandemic will continue in the future.

The findings show that unpaid caregivers “are being pushed to breaking point, and struggling to cope with the levels of care they are providing, without access to breaks and their usual support,” the report noted.

“Without the right intervention, the stress and challenges during this time could lead to carer breakdown, with negative impacts on the carer and people needing care lasting long beyond the COVID-19 pandemic,” it concluded.