Caring is tough, lacks support – and can be lonely

Days, weeks, months – campaigns built around certain periods in the year allow different causes time under in spotlight. Raising awareness, raising funds, trying to change behaviours.

A fortnight ago, it was Carers’ Week. Last week was Loneliness Awareness Week.

This, presumably, is a coincidence. Yet these two issues overlap. Carers face a raft of challenges and should receive more support than they do. One of these challenges, and one that perhaps gets less attention than others, is the risk of loneliness.

Caring can be all consuming. The level of statutory help – both in terms of services and cash - is low. It is a huge burden and people can sacrifice an awful lot when becoming a carer. This could be a job, or even a healthy social life more generally.

For obvious reasons, people who are less financially well off are much more vulnerable to the negative aspects of caring. They are less likely to be able to pay for respite services themselves, and more likely to struggle financially should they have to reduce or abandon their own career.

Moreover, caring can lead to loneliness. Some support for this does exist. For instance, Carers Trust points people towards a variety of services to help carers who find themselves burdened with loneliness. This includes befriending services, a variety of third sector organisations, and local councils.

However, like every other aspect of carer support, what is available is not enough.

Loneliness

Carers UK has undertaken various pieces of research about the risk of loneliness for carers. A 2015 report found that:

• 49% of carers’ romantic relationships are damaged by their caring responsibilities
• 36% feel uncomfortable talking to friends about caring
• 55% feel that they can’t get out much because of their caring responsibilities
• 45% can’t afford to take part in social activities
• 57% have lost touch with family and friends as a direct result of caring

A total of 83% of those surveyed for Alone and caring said they had at times felt lonely or isolated due to their role as a carer.

In 2017, the organisation produced another paper – The world shrinks: Carer loneliness – which made similar findings.

Per the report: “Carers say that providing care can be extremely rewarding, but it can also bring with it many challenges.  The loneliness carers experience is caused by a range of circumstances, many of them out of their control. You may be so busy that you have no time or energy left to see friends and other family, or they may drift away as your life becomes so different from theirs. You may find the emotional demands of caring for a loved one and focussing on their well-being means that you neglect your own…

“For many carers, the world simply shrinks. Your role can become one of providing and co-ordinating care, taking your loved one to medical appointments, going to the pharmacy, liaising with care workers. You can feel invisible, as you fade into the background and the needs of the person you are caring for take centre stage. It can be lonely bearing so much of the responsibility of caring for a loved one.”

Carers’ workload

Most campaigning around carers focuses on how caring for someone else can be relentless, and the scandalous lack of support that is available from government to help people do what is often more than a full-time job and is unpaid. The issue of carer loneliness specifically is rarely front and centre.

This year, research released for Carers Week focused understandably on the effects of Covid-19. It found that:

• Carers lost an average 25 hours of support per month from services or family and friends, compared with before the pandemic.
• More than a third (35%) of people caring unpaid for family members or friends feel unable to manage their caring role
• 72% of carers have not had any breaks from their caring role during the pandemic
• Carers Week charities call on Government to give back to carers and fund breaks

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – called on Westminster to provide £1.2 billion funding for unpaid carers’ breaks, to allow those providing upwards of 50 hours of care per week with time off for their own health and wellbeing.

Northern Ireland

Carers NI is a sister organisation/subsidiary of Carers UK. Its own research released for Carers’ Week found that:

• A third (33%) of people caring unpaid for family members or friends in NI feel unable to manage their caring role
• 79% of carers have not had any breaks from their caring role during the pandemic
• Fewer than one in 10 (9%) are confident that the support they receive with caring will continue following the COVID-19 pandemic.

Clare-Anne Magee, Head of Carers NI, said: “Carers are exhausted having cared around the clock for more than a year, and do not know how they can continue without a break. Many are worried that the support services they rely on will not continue in the future.

“Without the right support, the stress of the last year could lead to far more carers breaking down. Carers feel they have been abandoned and are crying out for more practical support. It is therefore essential that the Government ensures that carers can take breaks and that those providing endless hours of care each week get access to the meaningful breaks they need and deserve.

“We’re calling on the Department of Health and the Public Health Agency to look at the Infection, Prevention and Control guidelines in relation to day centres and short break providers and to give carers a timeline for the full return of services. Where services can’t re-open fully and safely, appropriate and meaningful alternatives and practical support for carers must be put in place.

“Unpaid carers need hope and support in the future and going forward, they must be at the heart of the Government’s plans for social care reform.”

A lot to handle

To mark Carers Week (and, as it happens, coinciding with Loneliness Awareness Week), the Assembly held a debate – tabled by Sinn Fein’s Colm Gildernew, on behalf of the Health Committee in his role as committee chair – calling for more support for carers.

The motion enjoyed broad support and passed without any friction. Members’ input covered off many of the obstacles faced by carers. Loneliness was mentioned twice.

Alliance’s Paula Bradshaw said: “Of around 310,000 carers in Northern Ireland, close to one third only joined the ranks during the pandemic… It is small wonder that the Carers NI document [the Carers’ Week survey cited above] states that carers are worn out: 74% are exhausted, 71% are anxious and 65% are isolated. One parent referred, understandably, to "a lonely, vicious cycle". Almost three quarters of carers say that they get no breaks at all; some do not even attempt to take one.”

The DUP’s Jonathan Buckley spoke about a November 2020 meeting of the Health Committee that took evidence from a number of organisations, saying: “We had a discussion with those groups about the mental health challenges that face carers, especially those who were cut off from their usual support networks due to the pandemic and lockdown, and about the loneliness that some carers faced. We need to find a way to support them.”

So, carers’ loneliness is not unknown or unacknowledged. This is a start. However, it is hard to see how it can be addressed on its own. Carers are not looked after properly - and, of course, Northern Ireland still has no loneliness strategy.

At a statutory level, wider troubles for carers (lack of support, both financial and in terms of direct services) have to be addressed before (or, at least, at the same time as) loneliness is tackled.

The work of carers needs greater support. However, the entirety of adult social care needs to be reformed – including the creation of a full suite of support for carers.

There is lots for government to do, lots that only government can do, with change needed at both Westminster and Stormont.

In the meantime, everyone can help. Over 300,000 people in NI are carers. That is over 15% of the population.

We all know people who are carers. Ask them about it. Ask if you can help. Ask if they just need some company, a chat, or relief of any kind. You might really make a difference.