To mark Carers Week 2026, and informed by our recent work supporting the development of a carer’s strategy for a local authority, IPC Visiting Research Fellow Dr Melanie Henwood reflects on what matters most in supporting the 5.8 million unpaid carers in the UK, and what needs to change to improve their experience.
Caring in 2026
In the UK there are at least 5.8 million unpaid carers providing vital care and support for family members and friends who are ill, disabled or no longer able to live independently because of long term conditions or the effects of ageing. Carers can be found in all age groups, but the peak likelihood of caring is among people in their fifties, while older carers (those aged over 75 and over 85) are the most heavily involved in providing the greatest hours of caring – typically reflecting care for a spouse or partner.
Caring can have a major negative impact on health and wellbeing, and on poverty particularly when it is a significant reason for people leaving employment early, having to reduce their hours or failing to pursue their career potential because of their caring commitments.
Carers Week launched as a national campaign in 2000, although with long-standing roots in pressure group initiatives since the 1980s. Carers Week coordinates a focus on carers across key charities – notably Carers UK – and partner organisations. This year’s campaign is focused particularly on building carer friendly communities, which Carers UK defines as:
“a place, space or organisation that values carers and does something practical to support them by identifying carers, listening and responding to their experiences so that they are not left to cope alone.”
Listening to local carers
Carers are better recognised than in previous decades and have been acknowledged in key legislative milestones including the Carers (Recognition and Services) Act 1995, the Carers and Disabled Children Act 2000, and The Care Act 2014. The latter Act gave carers for the first time the statutory right to an assessment of their own support needs.
Despite this apparent progress, carers continue to identify unmet needs, inequalities and challenges in their lives and in many ways, these are enduring issues that have been evident in carer research for more than forty years.
At IPC we have been working with a client committed to developing a new strategy for its local carer population, recognising that more is needed to support carers. We have engaged with carers through focus groups and one-to-one interviews and have found a consistent narrative in carer experience that points to lack of recognition, poor or inconsistent support and considerable isolation. We believe these findings are far from unusual in carer experience in many local councils, and they present a significant challenge to health and social care.
The stories that carers shared were overwhelmingly negative and reflective of poor experiences of support. There was considerable resignation among carers about their situation and low expectations that any Carers Strategy would offer substantial change or improvement. Despite such experiences, carers also exhibited continued commitment to caring and a determination to keep going; people typically spoke of the privilege of being a carer and the intrinsic satisfactions of providing care, even at great personal cost.
The reality of caring
Some key themes across the engagement underlined the importance to carers of:
- Being recognised
- Being heard
- Being supported
- Being cared about
- Having regular breaks
Too often, their experience was completely contrary to these principles, as the following comments highlight:
“In nearly every carers group (…), that’s what carers talk about, not being listened to, because the carer understands their loved one more than anyone else.”
“I think what’s missing is empathy. And again, that sort of, what’s right for you isn’t right for me. And … people don’t listen.”
Supporting the carer
Some local authority social care departments may fear that meeting carers’ needs will ‘open the floodgates’ to demands that they cannot manage and do not have the resources for. However, we found carers’ needs to be modest and realistic – far from expecting services to replace their care, carers emphasised the importance of compassionate and supportive contact, and the value of time away from caring. For example:
“Even, like, check-ins. How you doing? How are you coping? Are you getting to a point where you need respite? You know, I feel like that would be such an effective thing, even if it’s just a call, just to know that someone actually cares about you as well.”
“Just the opportunity to just have a change of environment once in a while, just something to do.”
“I need to remind myself, like… before I was anyone’s carer, I was me. And I still am, and there are other people that still need me, I am still useful.”
Being offered timely support is especially important as many carers explained how they had no help at all until they reached a crisis point, and experienced all the stress of becoming desperate for support:
“Yeah, it’s all exhausting, and you do have to be at crisis point to get anywhere.”
Understanding the importance of having a life outside of caring was a message that carers had picked up from carer information or from other carers:
“… make sure you have an outlet, whether it’s painting your nails, whether it’s, you know, taking walks, whether it’s reading, just have an outlet.”
Carers described practising deliberate self-care to protect their own physical and mental wellbeing, but typically this required them to make arrangements for themselves. Several carers spoke about how helpful it would be to have concessions to make use of services such as the local gym, and that without this they struggled to afford access.
Emotional support
Emotional support is essential, and what this looks like for individual carers will be different. Becoming a carer can be a shock, especially if it comes on suddenly and unexpectedly when people need information about practicalities, but also support with the situation, as this carer described:
“And I think it’s the emotional support, you know, particularly when you’re first – like that first year was quite stressful.”
“I feel the service user rightly does get the support, but they must not forget about the carer, because the carer can literally burn out If they’re not acknowledged with all what they’re doing, and when they need that extra support.”
Some carers found they benefited from meeting in carers groups,
“You can just feel… you do feel an element of comfort as well. You’re with people who have the understanding.”
While for others this was no help either because other carers seemed to have nothing in common with them (this was especially the case for younger carers who found that most of those attending groups were supporting elderly people living with dementia). Others who were juggling paid employment with caring similarly found groups meeting in the daytime to be unsuitable for them. Carer groups are no doubt valued by some, but they do not offer a panacea for carer support.
What next…
The carers we engaged with reflected a wide range of different experiences in terms of the needs of the person they supported, and the duration of their caring commitment. Despite these differences, there were striking similarities in their experience of support – or the lack of support – for them as carers, and in their views about what would make a positive difference.
Carers assessments did not seem to offer a gateway to recognition and help, which some described as “random” rather than planned or strategic, and as “all or nothing”. What carers want is to be listened to and heard – to be offered meaningful support that is relevant to their situation. One of the carer’s had a very clear recommendation that those developing a carers strategy should:
“Walk a mile in a carer’s shoes.”
Carer-friendly communities need to recognise carers and understand their circumstances; support them through meaningful and timely help and enable them to continue to participate and engage in social interaction to counter the highly isolating and individualised experience of caring.
It has been estimated that the economic value of support from unpaid carers in the UK is £184 billion every year. This is invisible but essential care that the country relies on and without which the NHS and social care systems would be entirely overwhelmed.
Much of what carers value, and what would make most difference to their ability to continue caring, is about changing the culture and attitudes of services and front-line staff that have primary contract with carers.
Enabling carers to feel valued, listened to and supported can be achieved without demands being unmanageable for services. Failure to do so places unacceptable demands on carers and increases the stress they experience, sometimes leading to increasing health problems for carers and eventual breakdown of care. A crisis-led model ultimately drives higher costs, produces poorer outcomes and risks carer burn-out.
What carers want is not a mystery, nor a sudden revelation; years of consultation and research have painted a consistent picture of services rarely designed around people’s needs and where support is fragmented and poorly joined up. What carers need is clear and honest communication; flexible and reliable support; regular time away from caring; and check-in contact from people who are informed, compassionate and empathic. Small changes could have a major transformational impact in improving carers’ wellbeing and sense of value. Or we carry on as we have done for years, paying lip service to carers and offering them little until they are at breaking point. Surely, it’s time to change the narrative and ensure ‘caring for the carers’ is more than just a slogan?
