National evidence base
This section summarises evidence about breaks drawn mainly from a targeted literature review and from Carers UK survey data. A summary of the literature review is available.
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 have been scaled back, 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 cared-for person, or as a whole family, but not having to do all the caring.
- Breaks can play a real 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 cared-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 is important – residential, in the home, out of the home, day services with good activities, etc.
- Complexity of needs is often a real barrier to being able to access appropriate support.
- 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 wanted options for a gradual experience to build up trust with the service provider. More time to get approaches right and clearer communication with care staff about the experience of their cared-for person is needed.
- Breaks have to work for the cared-for person to be effective. The person being cared for has to have a good experience. 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.
- 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, etc.
- 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.’
Argenti Care Technology in Hampshire Open
Providers: Hampshire County Council and PA Consulting
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.
Contact Steve Taylor, PA Consulting
National evidence shows that some needs groups or communities are not getting the breaks they need and may need specific attention to ensure that 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’.
- 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 they think about breaks.
- Black, Asian and minority ethnic (BAME) carers are less likely to access support services. Possible reasons include concerns from carers around language and cultural appropriateness but also assumptions made about BAME carers and cultural aspects of caring from those commissioning and providing services.
According to the Carers UK breaks survey (December 2018), many carers are not getting the breaks they need, and 25 per cent said they hadn’t had a day off from caring for more than five years, while 40 per cent said they hadn’t had a day off for more than a year. This has a real impact – 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 people?
- The cost of taking a break can be a real barrier. Thirty-eight per cent said they couldn’t afford replacement care. Over 20 per cent said they could not afford to do any activities during the free time replacement care might offer them. Only 13 per cent said that the local authority covered all the replacement care costs. Many carers were also unaware of what funding is available and how much things cost.
- The person they care for isn’t willing to accept care and support from others.
- Breaks are not being discussed in assessments. Thirty-three per cent of carers who had an assessment in the last year stated that their need to have regular breaks from caring was not considered.
- Information and advice – 27 per cent of Carers UK survey respondents said they had not been able to take a break because, for example, ‘I did not know how to find information about taking a break’; 35 per cent said they had no information at all on how they could take a break.
- Arranging breaks. 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.
- The limited uptake of direct payments – which could offer real flexibility – was a particular issue for older people. People were put off by the administrative burden of arranging care. Carers of people with direct payments reported higher stress levels due to the additional responsibilities.
We should collect and use data and information from assessments – from carers and people who use services.Carers’ Breaks Reference Group discussion, February 2019
- The standard offer – traditional respite/breaks based on fixed days/hours (while valued by many) does not meet the needs of many carers who need choice and options (but don’t assume).
- The development of more carer-friendly communities can reduce the demands for formal respite 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 respite care rather than residential placements. Carers say more accessible and affordable sitting services would greatly improve their lives (NICE 2016). However, for the minority of those who care for people with complex needs, access to residential respite is critical.
- Breaks which offer social and recreational activities (for both carer and cared-for person) are preferred by carers.
- Couple- or family-based breaks with care available, so the carer has a break too.
- Shared Lives arrangements enable people to spend time with Shared Lives carers – staying as part of the household.
- Family and friends – 29 per cent of Carers UK respondents said that family and friends provided the replacement care.
There is no ‘one size fits all’ service. To meet diverse needs and preferences, areas need a range of options which could include a combination of more traditional services such as a few hours sitting service on a regular basis together with more creative options such as a relationship-centred short break for the carer and cared-for person to enjoy shared activities. More on this in the Shaping the market section