Sense research reveals ‘burnt-out’ family carers looking after disabled family members
New research, published by the national disability charity, Sense, has laid bare the pressure on carers looking after disabled family members, with nearly two thirds describing themselves as exhausted and/or “burnt out”, with many delivering round-the-clock care without a break.
According to the charity, that supports people with complex disabilities, family carers spend an average of 42 hours a week providing care and support to their loved ones, completing tasks such as personal care, feeding, dressing, lifting and giving medication.
Almost a third of carers will spend more than two full days providing care, and one in six more than three full days.
Despite the long hours, many carers are unable to take a break from their caring responsibilities. More than a third of carers said they don’t receive any support to be able to take a meaningful break, with 1 in 5 unable to remember the last time they could take a break.
Stretches of time between breaks are common, with two in five carers having not had a break in at least the past two months. Only six per cent of people said they’d had a break in the past week.
Being able to take a break from caring responsibilities is essential, offering time to rest, reconnect with family and friends, or complete other tasks.
The findings reveal that carers will most commonly use the time to catch up on household tasks, such as cleaning (56 per cent), catching up on sleep (46 per cent) and spending time with other members of the family or friends (46 per cent). More than a third (35 per cent) use their ‘break’ to do paid work.
Respite services are available for families, offering temporary care that lets a carer take a break from looking after their loved one. However, the support available varies widely across the country, and families complain that some services paused during the pandemic have not resumed.
Carers cites affordability as the biggest barrier preventing them from accessing respite services. This is followed by a lack of clear information available on what services and support are available in the family’s local area and long waiting lists to access support.
22 per cent of carers say that services and support available don’t meet the needs of the person they care for, while other factors include restrictive eligibility criteria and transport costs.
Sense believes the needs of families are being neglected and is calling on national government to commit to long-term funding for specialist respite services, and for Local Authorities to improve its provision of information available for families so they know what is available to them.
Richard Kramer, Chief Executive of Sense, said: “Caring for someone with complex disabilities is often demanding, non-stop work, and takes its toll physically and mentally.
“Yet sadly, family carers across the country are missing out on a being able to take a meaningful break from these responsibilities – denied the opportunity to rest and recuperate, reconnect with family and friends, or take part in other activities.
“The pandemic and now the cost-of-living crisis has made the situation worse, with carers taking on even greater caring responsibilities and receiving less support, with their health and wellbeing suffering as a result. Many are simply burn-out.
“We need to show that we value these incredible individuals in our communities. Local and national government must commit long-term resource and funding to support families.”
Sense has a launched a new campaign calling for greater respite support for families.
