93 percent of unpaid carers of disabled children have felt lonely or socially isolated, new research from Carers UK and the Jo Cox Commission on Loneliness has found.

An unwillingness to talk to others about care responsibilities is a key barrier to inclusion at work, home and in the community. One third (32%) felt “uncomfortable” talking to friends about caring, as did those who felt “isolated” at work due to care responsibilities (32%).

"Caring for someone is one of the most important things we do but without support to have a life outside caring, it can be incredibly lonely, worsened by financial pressures, poor understanding from friends and colleagues, and a lack of regular breaks."

Alongside a lack of understanding from others, carers most frequently ascribed loneliness or social isolation to a lack of time or money to socialise and the difficulty of leaving the house due to caring commitments.

According to carers, the following would make the biggest difference in combating loneliness:

  • Regular breaks from caring (54%)
  • More understanding from society (52%)
  • Being able to take part in leisure activities (40%)
  • Support paying for social activities (31%)
  • More understanding at work (30%)
  • Being in touch with other carers (29%)
  • Feeling more able to talk to friends and family (23%)
  • Being able to take part in education or training (21%)

The research reveals that certain caring circumstances are linked to lonelier care experiences, such as younger carers under 24 years old (89%), carers of disabled children (93%), people who care for 50 hours or more per week (86%) or ‘sandwich carers’ who look after loved ones alongside parenting responsibilities (86%).

The findings are released today as part of the charity’s work with the Jo Cox Commission on Loneliness. The Commission aims to ‘Start a Conversation’ around loneliness, mobilising the public to combat the ‘silent epidemic’ by destigmatising a prevalent but often unaddressed issue.

'Caring touches all our lives'

“Soon after Joshua began attending college, I realised I no longer could continue to work and care for him as I had done in the past and reluctantly gave up work," recalls Jacqui Darlington. "I was now a full time unpaid carer to a young man with Down’s syndrome, Autism and no understandable speech. I went days without speaking to anyone and the winter months were the worst."

"Eventually I was told by my GP that I had to go out every day for a loaf of bread but I didn’t understand why when a loaf would last us a week. Once I understood what the GP meant I began changing. I went out every day (well almost) so that I could speak to people."

"I became involved in parent/carer groups, forums and joined Carers UK. I am now happier than I have ever been as I have various carers I can talk to or ask for support without feeling that I have to explain anything and everything to them.”

Helena Herklots CBE, Chief Executive of Carers UK, said: "Loneliness is a powerful, sometimes overwhelming, emotion which all-too-many carers experience in silence. Caring touches all our lives yet society and public services often fail to grasp how isolating looking after a loved one can be."

"Caring for someone is one of the most important things we do but without support to have a life outside caring, it can be incredibly lonely, worsened by financial pressures, poor understanding from friends and colleagues, and a lack of regular breaks."

The findings are released today as part of the charity’s work with the Jo Cox Commission on Loneliness. The Commission aims to ‘Start a Conversation’ around loneliness, mobilising the public to combat the ‘silent epidemic’ by destigmatising a prevalent but often unaddressed issue.