Carers: Facts and Figures

Abstract

Carers provide a valuable service supporting some of the most vulnerable people in our society. However, they experience health, social and financial problems as a result of their role. This first article in our special issue on carers presents some facts and figures about carers that set the scene for the following articles in this issue on supporting carers in the community.

The GP curriculum and informal carers

Although numerous GP curriculum statements mention carers, there is no single curriculum statement that focuses on carer support. This topic is perhaps best covered by Curriculum statement 5: Healthy people—promoting health and preventing disease. This statement advocates a holistic approach to the patient and his or her family and carers, where the main focus is in promoting their health and general well-being. In particular, GPs must be able to undertake a needs assessment of a target group or service.

A carer (sometimes termed ‘informal carer’) is a person who, without payment, provides support to a partner, child, relative, friend or neighbour who could not manage without help. This could be due to age, physical or mental illness, addiction or disability [Royal College of General Practitioners/The Princess Royal Trust for Carers, 2008].

Carers under the age of 18 years are termed ‘young carers’. They have their own unique problems and an article later in this special issue concentrates specifically on this particularly vulnerable group.

When I started doing work looking at carers' issues, I interviewed GPs and community nurses to ask what they currently did for carers and what they thought that their role should be (Simon and Kendrick, 2001). During the course of that study, one GP said to me that ‘Carers are no more alike than women’. He had a point as anyone of us might become a carer at any time; carers can be any age, male or female and may come from any social, cultural or ethnic background (Box 1). Furthermore, carers perform a huge variety of different caring tasks for the people that they care for. However, there are some generalizations that can be made and this article aims to provide a broad overview of the facts and figures that we know about carers to enable you to understand the issues that carers face when reading the other articles in this special issue.

Box 1.

Diversity of carers

The following are all fictional carer stories but reflect the diversity of carers that you might see in your practice:

Mohammed is 22 and lives with his mum who has schizophrenia and is currently going through a bad patch.

Ethel is 84 and is looking after her husband who has dementia.

Julie is 36 and a single, working mum. Her father has cancer. He is a widower and so Julie is trying to juggle work, looking after her daughter and providing practical and emotional support to her father who lives over 100 miles away.

Amy is 14. Her mother has multiple sclerosis. Her father has given up work to look after her mother but relies on Amy to give him a break and help out when she comes home from school.

Pavel is 62. He has rheumatoid arthritis. His wife has just been discharged home from hospital following a stroke.

How many carers are there?

Figures from the 2001 census show that there were nearly 6 million unpaid adult informal carers in the UK at that time (1 in 10 adults). About 1.2 million were providing care for more than 50 hours each week (Fig. 1). The most recent figures, collected in 2009/10 show that this figure has increased to 12%. Six per cent care for someone living in their own home; 6% for someone living elsewhere (NHS Information Centre for Health and Social Care, 2010).

Figure 1.

Number of carers registered with your practice

Overall, the majority of carers are women (58%). However, of those that work full-time and care for more than 50 hours each week, the majority are men (University of Leeds/Carers UK, 2006). Although carers can be any age, the peak age is 50–59 years and more than one in five people in their 50s are providing some unpaid care. Over 65s account for a third of those providing more than 50 hours care a week and many have their own health problems too (Doran et al., 2003).

Anyone can become a carer and approximately 2 million people move in and out of caring roles every year. Around 60% of people will be a carer at some point in their lives. Over the next 30 years, it is estimated that the number of carers at any time will increase by 3.4 million (around 60%) as our population ages (Carers UK, 2001). Therefore, carers form a substantial and growing proportion of each practice list.

People often gladly take on their roles as carers, but they do not usually choose to become carers. It is a role that may come suddenly and unexpectedly, for example after injury or sudden illness of another person, or may creep up over time, for example when looking after a relative or friend with a progressive illness.

Economic value of carers

The 1.2 million carers who provide care for more than 50 hours each week equate to a full-time workforce larger than the entire National Health Service (NHS). Carers are estimated to save the UK economy £87 billion a year in care costs. This is equivalent to £15 260/year for every carer in the UK (University of Leeds/Carers UK, 2007). At the time that this calculation was made, this figure exceeded total government spending on the NHS and was several times the spending on social services. Carers enable many who cannot look after themselves to maintain their independence and quality of life. Our society could not afford to support disabled individuals in society without them.

Caring tasks

The tasks that carers perform depend on a number of factors, including:

Factors relating to the person being cared for. For example, a person with mental health problems will have very different care needs to a person with paralysis.

Factors relating to the carer. For example, if the carer works or has other caring responsibilities, he or she might not have the time to perform some caring tasks. Similarly, if the carer has previous expert nursing experience, he or she might take on tasks other carers would not be capable of.

Factors relating to the environment. For example, which services are available locally or whether the carer lives in the same home as the patient.

Box 2 summarizes the tasks that carers might do. In addition, many carers have to cope with abusive behaviour from the people that they care for. A survey of 1066 carers done by The Princess Royal Trust for Carers in 2002–03 found that 44% of the carers surveyed suffered verbal or emotional abuse and 28% suffered physical aggression or violence from the person that they cared for (The Princess Royal Trust for Carers, 2004).

Box 2.

Common caring tasks

Domestic tasks, such as shopping, cleaning, gardening, washing and/or ironing

General care involving nursing tasks such as giving medication, changing dressings and helping with mobility

Providing emotional support and supervision

Intimate care, including washing the person cared for, dressing and attending to toileting needs

Childcare when parents are unable to care for children themselves

Other tasks, such as bill paying, entertainment, accompanying to appointments and translating

Carers as partners in care

Carers know the people that they care for better than anyone else. This knowledge can be extremely useful to health and social care professionals in planning patient care and also in identification of problems that may require intervention. If care is planned without the input of the carer, an opportunity has been lost. Therefore, engagement and co-operation with carers are an essential part of good patient care.

Furthermore, co-operation is needed from carers to implement effectively any patient care plan. Involving the carer when devising a care plan, and listening to the carer's views, is likely to result in better concordance.

Effects of caring on the carer

Although carers do not generally choose to be carers, most would prefer to care for their loved ones themselves than have someone else care for them. Although many carers gain great personal satisfaction from their caring role and want to continue caring, there is evidence to suggest that they suffer health, social and financial consequences as a result. These are described separately here; however in reality, health, social and financial effects of caring all impact upon each other. For example, financial hardship may result in restricted social activities; restriction of social networks may impact on psychological health; depression can cause self-neglect and thus physical health problems (Fig. 2).

Figure 2.

The effects of caring

Psychological effects of caring

Carer surveys show that one in three carers providing care for over 50 hours a week reports depression and one in two disturbed sleep (National Statistics, 2003). Such surveys have been criticized because they use self-selected populations of carers and self-reported health problems.

However, independent research evidence supports these findings. The British Household Panel Survey collected data in the 1990s. Each participant had psychological well-being assessed at annual intervals using the General Health Questionnaire. Within the data collected was information on 3000 people who became carers, 2900 former carers and 11100 non-carers. Analysis of these data showed that informal carers providing long hours of care over extended periods had increased levels of distress, women more so than men. Compared with non-carers, risk for distress increased progressively with the amount of time devoted to caregiving each week. The adverse effects of caregiving were evident beyond the end of caregiving episodes (Hirst, 2005). Furthermore, a meta-analysis of 84 studies has shown that up to 40% of carers have significant distress and depression levels, with behaviour problems causing the highest levels of distress (Pinquart and Sorensen, 2003a,b).

It is commonly thought that carer distress is a process of attrition. However, that is probably not the case. Information from the British Household Panel Survey showed that adverse effects on the psychological well-being of heavily involved carers were most pronounced around the start of caregiving episodes (Hirst, 2005). My own cohort study following carers of stroke patients from the date of stroke showed that around 40% of women (but not men) develop clinically significant levels of distress even before the stroke patient is discharged from hospital in anticipation of the caregiving situation. However, 40% of men develop similar levels of distress before the stroke patient has been home 6 weeks. The same men and women are still significantly distressed a year later (Simon et al., 2009).

Physical health problems

In one postal survey, 51% of carers reported physical injury as a result of caring, mainly back and shoulder injuries (Henwood, 1998). In The Princess Royal Trust Carer Health Survey, 61% of the 1066 carers who completed the survey reported currently feeling ‘physically drained’ (The Princess Royal Trust for Carers, 2004). In addition, 20% reported back injury as a result of caring (mainly among carers doing heavy physical caring for those with physical disabilities) and 10% put their high blood pressure down to the stress of caregiving. However, again these findings can be criticized because the populations surveyed were not necessarily representative of all carers, and the health problems were self-reported.

Perhaps the most powerful evidence for a negative effect of caring on physical health comes from a large-scale study done in the USA (Schulz and Beach, 1999). This study showed an increased incidence of coronary heart disease and mortality amongst a mixed group of carers.

Meta-analysis findings support a negative effect of caring on physical health but the effect is smaller than for psychological health. One meta-analysis of 23 studies compared the physical health of carers looking after people with a diagnosis of dementia with demographically similar non-carers (Vitaliano et al., 2003). When examined across 11 health categories, carers exhibited a slightly greater risk for health problems than did non-carers. Another meta-analysis of 84 studies comparing carers looking after people with a variety of problems with non-carers concluded that differences in the levels of physical health in favour of non-carers were statistically significant but small (Pinquart and Sorensen, 2003b).

Social effects of caring

Caring can impact on all dimensions of family functioning and well-being. Many carers emphasize positive reasons for caring and the benefits that they receive. However, carers also report adverse effects of caring on social functioning, including activity restriction, deterioration of relationships with other family members and social isolation. Carers find that social support that they have reduces both in quantity and in quality over time, and they generally have smaller social networks than other people. Perceptions of the availability of social support are associated with positive mental health outcomes for carers (Simon et al., 2009).

Effects on employment

Caring can affect ability to work and job prospects. One in five carers gives up work to care, and on average, carers retire 8 years early. In households of working-age carers looking after their partners, no one in the household is in paid work in 87% of cases (Carers UK, 2007). Caring is responsible for 26% of economic inactivity in the UK working-age population (Trades Union Congress, 2004). However, the effects of caring can also be more subtle, for example by hindering promotion prospects.

Cost of caring

Perhaps unsurprisingly, by the time the additional costs of looking after a person with a disability and the negative impact of caring on work are taken into consideration, the majority of carers find that they are worse off as a result of caring. The financial situation of many carers is so difficult that they are struggling to pay even basic bills. In one Carers UK survey, 52% had cut back on buying food, 65% of carers were in fuel poverty and 74% had difficulty paying essential utility bills. Over half (55%) were also in debt as a result of their caring responsibilities (Carers UK, 2008). Financial problems appear to be directly related to the amount of care provided i.e. the more care provided the more likely a carer is to be in financial difficulty.

However, information from The Princess Royal Trust Carers Centres suggests that fewer than 50% of carers claim all the benefits that they are eligible for. This finding is supported by data from Carers UK. They found that 81% of respondents to their survey had been caring for over a year before they received financial support and just under half of these had been caring for 5 years before getting support (Carers UK, 2006). Half felt that they had missed out on benefits.

Carers and support services

Amount of formal support provided is largely determined by the level of need of the person being cared for. Although many carers are in contact with multiple support agencies, 88% of carers have visited their GP in any year for concerns about their own health, as well as visiting for the person that they are caring for (Henwood, 1998). This is a far higher proportion of carers than has seen any other support professional. Carers expect the GP to know about available help and presume that if they are not informed about support, it does not exist (Henwood, 1998). Furthermore, carers view their GP as the person most able to make a difference to their situation (Henwood, 1998).

Therefore, GPs have a crucial role to play for carers who need to access additional support. However, although there are many examples of excellent support for carers from GPs and other primary care team members, carers often feel that their needs for support have not been met and that GPs do not understand them (Henwood, 1998; Warner and Wexler, 1998).

There has been a considerable amount of research work done trying to find the reasons for this. An early qualitative study (Twigg and Atkin, 1994) suggested that GPs naturally fall into one of three groups.

Those that attempt to help carers and who actively try to provide carer support.

Those who are vaguely aware of carer issues and embarrassed that they are not doing more but whose response to carers is ad hoc and arbitrary. This is the majority of GPs. Carers need to be in the right place at the right time to receive support. These GPs will not go out of their way to provide help or to seek help from sources they are unfamiliar with.

Those for whom the issue of informal care is largely irrelevant—carers have no place in their frame of reference. Carers are unlikely to get any help from these GPs. GPs in this group do not feel that they are failing in their responsibilities towards carers as they do not have any.

Our own survey of 300 GPs and 280 District Nurses showed that most see themselves only in a reactive role—responding to problems as and when they occur (Simon and Kendrick, 2001; Simon et al., 2002). Both GPs and District Nurses considered that they had insufficient time, resources and training to fulfil a more pro-active role. They suggested that other groups (often each other) were better suited to the demands of that role.

Since that time, carers' issues have achieved far greater prominence with publication of the National Strategy for Carers by the Government (initially published in 1999, with the most recent revised version published in 2008) and extensive coverage in the press. This document stresses the role of the primary care team in support of carers. A target has also been included within the Quality and Outcomes Framework to encourage GPs to identify carers and refer them for a social services carers' assessment (BMA/NHS Employers, 2009). Furthermore, GP training has also changed a great deal. Patient-centred holistic care is now our aim and this includes support for carers.

Conclusions

More than 1 in 10 adults at any time is a carer and this proportion is set to increase as our population ages. More than 60% of us can expect to be carers at some point in our lives. Carers enable many people who cannot look after themselves to maintain their independence and quality of life. As a society, we do not have the financial resources to provide this level of individual support in the community without carers. As healthcare professionals, engaging with carers who know the people that they look after better than anyone else can result in better patient care.

However, carers suffer health, social and financial consequences as a result of their role. Failure to attend to carers' needs may lead to collapse of the caregiving situation.

Although supporting carers requires multidisciplinary input from health and social services and the voluntary sector, primary care is often the initial point of access for carers to obtain further support and therefore, we have a crucial role to play. The articles in this special issue are designed to show how carers can be better supported within primary care by organizing GP practices to identify carers, enable access to healthcare for carers and signpost carers to financial, social and voluntary sector resources as needed.

Key points

In 2009/10 12% of adults in the UK were carers

Over the next 30 years, it is estimated that the number of carers at any time will increase by 3.4 million (around 60%) as our population ages

Carers suffer health and social problems as a result of their role with up to 40% having significant levels of psychological distress

Carers also suffer financially and have restricted employment prospects; they often find it hard to meet even essential bills, but many do not claim all the benefits that they are eligible for

Carers' first point of access to formal support services is often via the GP and primary care team, so it is essential that we have mechanisms in place to support carers and signpost them to other appropriate resources as needed

Footnotes

Acknowledgements

This article is based on the Royal College of General Practitioners e-carers online learning programme. To access this resource and find out more about carers, the problems that they face, and ways that they can be supported in primary care visit website

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