National evidence base – adult carers

This section summarises evidence about breaks drawn mainly from a targeted literature review and from Carers UK survey data. The evidence is from 2019, the last full year prior to the COVID-19 pandemic. A summary of the literature review plus detailed data is available. The term ‘respite’ is occasionally used in this section where that is the term that has been used in a specific survey or research.

Breaks are highly valued by carers and for many are essential to their wellbeing. Evidence highlights some common barriers and issues, including lack of flexibility, concerns about quality and costs and low take-up for some services. There is a lack of recorded evidence about outcomes and cost-effectiveness (which doesn’t mean breaks aren’t effective!).

Availability of breaks and cost-effectiveness

Trends show fewer carers getting support as spend on support for carers and on respite services has reduced (Carers UK, 2018). NICE (2016) reported over a quarter of local councils reducing the capacity of their short break services. Day services had been scaled back between 2014-2019 and have been badly affected by COVID-19, increasing pressure on carers if suitable alternatives aren’t available.

Cost comparisons are difficult. It is hard to compare across different types of services such as residential- vs community-based services. Unit costs don’t help us to understand impact or cost avoidance. Wider analysis, however, shows that investing in carer support can avoid costs many times over and that means-testing breaks is a false economy (see Economic Case for Investment in Carers – ADASS).

We need to get better at measuring baseline data and outcomes from breaks across health and social care.

Carers’ Breaks Reference Group discussion, February 2019

Importance of breaks

Carers value breaks for a wide range of reasons – practical, emotional, social and psychological.
For some, the break has value beyond the allotted time: ‘to look forward to a break has the same effect as the break itself’.
It’s important to think about whole family approaches and breaks as ‘a break from the caring routine’, not just time away from the person. Some carers prefer a break that is about being with the person they care for, or as a whole family, but not having to do all the caring.
Breaks can play a vital preventive role, sustaining the caring relationship and preventing carer stress, crisis and breakdown. There are key points where, if practical support and information had been provided, the impact of caring may be reduced.
Breaks can reduce loneliness and isolation, enabling the carer (and the person they care for) to stay connected to family, friends and things they enjoy.

What do carers want?

The following themes emerged about the types of approaches that would make breaks relevant, appropriate and therefore more likely to meet outcomes and promote wellbeing.

Breaks should be part of an integrated offer from joined-up services which talk to each other and have the carer’s needs at the centre.
More choice and control for carers over the type of break they take. Everyone’s needs, preferences and situations are different, so carers want a range of breaks available. Flexibility and a mix of settings are important – residential, in the home, out of the home, day services with good activities, for example.
Complexity of needs is often a real barrier to being able to access appropriate support, so breaks that offer specialist skills and understanding can be important.
Creative solutions are welcomed and these were highlighted for certain needs such as early onset dementia, or advanced multiple sclerosis (MS) for a younger person where they want age-appropriate activities.
Quality of support is vital: it strongly influences whether carers will take a break. A poor experience can put them off. Carers want time to build up trust with the service provider so they can be confident the person they care for will have a good experience.
Breaks have to work for the person who is cared for to be effective. That might be about doing something they really enjoy. It can also be about support services having the right training and confidence so the carer is not constantly called.
Wider family can be key in offering breaks, but there are limits. They may not always be available, or may not have the skills or knowledge. They may also benefit from training, advice or back-up arrangements.
Some carers are happy to arrange breaks themselves, others want help with this, because it is too difficult, it’s another task, or they are too tired, for example.
Technology can be a great enabler, giving peace of mind and more independence. But for most carers, hands-on care cannot yet be replaced and technology in itself does not constitute a break. ‘It’s not a break if you are constantly in touch with the person you look after.’

Practice examples

Hampshire County Council and the PA Consulting Group-led Argenti Telehealthcare Partnership have developed a telecare service for carers and those that they care for. Telecare services include environmental monitoring devices for the person‘s home (e.g. to identify gas leaks or fires), devices to detect whether the person has fallen or is experiencing an epileptic fit, and other communication aids to help carers keep in touch easily with the person they care for, either directly or via a monitoring centre. These devices can offer reassurance to families and offer peace of mind if an emergency were to arise.

Many carers in Hampshire struggle to get ‘Take a break’ services because of a lack of supply of appropriate services. Some rural areas have no coverage. Carers who cannot source these services can receive a care technology installation to help them manage. This may include, for example, sensors that alert via a mobile pager so that they can sleep or go out for short periods and be alerted if needed. Argenti receives and supports two or three new carers each month in this way in Hampshire.

Early diagnosis of dementia in Hampshire leads to a referral for care technology through Dementia Advisors. Argenti installs care technology as early as possible to encourage use and delay needs escalating to keep people as independent as possible. Over the last three years, 1,904 referrals for the service have been made, of which 1,174 were made partly to reduce carer stress to keep the person at home. There are currently 1,282 live connections.

Eighty-four per cent of carers report working less, and 60 per cent are more able to pursue their own interests and socialise because of their relative or friend’s telecare.

Argenti also offers all private pay customers access to the Carers UK portal as an additional service to support them in their caring role.

Argenti and Hampshire County Council ran a project trailing the use of Alexa (voice controlled service) for 50 eligible people in 2018. The project indicates significant impact on feelings of independence, isolation and connectedness; and reduction in carer breakdown risk.

Two participants saw a direct reduction in costs of care at a total value of £5k p.a.

Website Argenti Care Technology: Improving adult social care while reducing costs

Contact Steve Taylor, PA Consulting

See: National evidence base: What do carers want? and providing breaks

Diversity

National evidence shows that some needs groups or communities are not getting the breaks they need and may need specific attention to ensure breaks are available that are relevant and work for them. Examples include the following:

The uptake of respite services by carers of people with dementia is relatively low. Getting the offer right can help maintain the caring relationship and potentially delay admission to long-term care.
For people with mental health needs, breaks may not be properly considered. There may be stigma and lack of acknowledgement of needs, with more ‘caring at a distance’.
Black, Asian and minority ethnic (BAME) carers are less likely to access support services. Possible reasons include concerns from carers about language and cultural appropriateness but also assumptions made about BAME carers and cultural aspects of caring from those commissioning and providing services.
Young carers may be invisible or want opportunities to take a different form. They get a raw deal when it comes to support: 67 per cent of young carers had not received any support for their caring role. Read here what some young carers said about breaks.

What would you like to do on a break? What would a break look like?

Quality time away from caring to recharge your batteries
Doing something as simple as sitting in a library
I agree yoga classes to de-stress would be a great idea. Or support with other gym classes/ membership
Going camping somewhere with no phone signal… Can’t check in or be called on.
I would just like to lay on a beach for a week with no care in the world
Yes a break for me would be a small caravan or room near a beach only for a week and that’s all there is to it ·
I would like to go to a social club or join some kind of sport club and go once a week. A one off thing might be something like go ape or going to see a gig
Yoga classes, relaxation therapies, trekking/outward bound, spa day, going out for a meal
Theme park
Residential trip – team building
Hiking
Beach
Going out for food

What stops you from having a break and doing these things?

Not having the money to do it/ get there
The money and the free time and knowing how to access
Going on your own could be daunting
The money and feeling guilty, in case I am needed but was too far away or unable to get back.
A break in my case is very necessary as I have recently been to the doctors about it and the stress is very bad for your mental health. So for me what is stopping me is money to rent a caravan for a week plus food money for the week as well. No guilt or complex emotions I know people will be fine for a week if I go, because between help from the government, attending college, part-time work and caring for a family, I don’t have the time to acquire the funds for this and above all being a mature student and knowing after days of researching, attending meetings and writing so many letters there is nothing out there to assist me with funds
It’s hard to think for yourself when you are so busy.
Me doing stuff does not come into it.
You worry you know
Lack of time, either working, caring or sleeping.

Take-up of breaks

According to the State of Caring Survey report (2022), many carers are not getting the breaks they need: 41 per cent of carers stated they haven’t taken a break in the last 12 months of the report being published. Carers have also stated in the State of Caring Survey (2022) that the impact of caring on their physical and/or mental health was one of the main challenges they will face over the coming year. Wider evidence has shown that carers who reported not having had a break from caring within the last year were more likely to report having suffered mental ill health as a result of caring or that their physical health had worsened as a result of caring.

What’s stopping carers taking a break? Evidence from the State of Caring (2022) suggests that:

36 per cent of carers did not know what services were available to them, with that number rising to 47 per cent for people caring for less than a year.
The cost of taking a break can be a real barrier. 31 per cent said they needed more affordable care services for the person they care for. 19 per cent of all carers said a reduction in charges would be the things that would make the most difference to them.
For a fifth of carers, concerns over catching COVID-19 were a significant barrier.
The person they care for isn’t willing to accept care and support from others.
For those carers who said they did not want a break, 57 per cent said they did not want strangers looking after the person they care for.
People caring for someone with a mental health problem found it more difficult to find support.
Information and advice – only 21 per cent of carers agreed or strongly agreed with the statement that they have the right information and advice to be able to make informed decisions.
The Carers UK Survey (2018) that focussed on carers breaks, highlighted that breaks are often not discussed in assessments. Thirty-three per cent of carers who had an assessment in the previous year stated that their need to have regular breaks from caring was not considered.
Arranging breaks. The Carers UK 2018 survey highlighted that the effort and bureaucracy involved can be very off-putting for carers who already have multiple demands on their time. Sixty-seven per cent of carers organised replacement care themselves and only 11 per cent did so with support of their local authority. Five per cent reported that the council had organised breaks for them.
Direct payments – which could offer real flexibility – were a particular issue for older people who were put off by the administrative burden of arranging care. Managing direct payments can lead to added stress for carers.

How carers used breaks

Drawing on the Carers UK 2108 survey that focussed on carers breaks:

Many carers were reporting using the break to do something positive for themselves – taking part in leisure activities, hobbies, exercise or ‘pampering’ themselves.
Over half (52 per cent) spent time with other family and friends.
Many however, reported using breaks to undertake practical tasks such as housework (37 per cent), to attend their own medical appointments (33 per cent) or to catch up on sleep (50 per cent).
The most common ways that the person who is cared for spent the break was either being cared for at home (51 per cent) or in short-term residential or nursing care (20 per cent).
Alternative care was largely provided by family and friends (44 per cent) or by paid care workers (34 per cent).

We should collect and use data and information from assessments – from carers and people who use services.

Carers’ Breaks Reference Group discussion, February 2019

Implications for models of support

The standard offer – traditional breaks based on fixed days/hours (while valued by many) does not meet the needs of the many carers who need more choice and flexibility (but don’t assume).
Family and friends offer vital support, including providing replacement care.
The development of more carer-friendly communities can reduce the demands for formal breaks services and create opportunities for reaching carers who have little or no contact with services for carers.
There is a preference among carers for more at-home support for breaks rather than residential placements. For example, more accessible and affordable sitting services.
For many carers who care for people with complex needs, access to residential breaks can be critical. These people are less likely to receive breaks due to the lack of options and skills available.
Breaks which offer social and recreational activities (for both carer and the person they care for) are preferred by many carers.
Couple- or family-based breaks with care available, so the carer has a break too can be a valued way of spend quality time together.
Shared Lives arrangements enable people to spend time with Shared Lives carers – staying as part of the household.

Carers UK State of Caring survey (2022)

Legal and policy context Carers’ breaks for adults Webinar: Expanding and improving adult carers' breaks