Origins of the Terms ‘Carer’ and ‘Caregiver’

The Oxford English Dictionary reports that the first use of the term ‘carer’ to describe the unpaid work undertaken by people—generally women—looking after relatives or friends in need of support because of age, disability, or illness occurred in the late 1970s and early 1980s. In North America and Australasia, the term ‘caregiver’ is used more frequently than ‘carer’. Both words share a similar etymological history in that their use can be dated from the time when increases in life expectancy and changes to the organization of systems of care for older people led to greater numbers of older people living at home and a reduction in the number of long-stay institutions. This coincided with wider recognition of the role played by women, in particular, in undertaking unpaid domestic work, often at the expense of their own opportunities for paid employment and for leisure time. Before long, it became clear that carers themselves comprised an extremely heterogeneous group and that this variation would influence their experiences of caring. For example, the terms ‘women in the middle’ and the ‘sandwich generation’3 were coined to describe the multiple responsibilities of women combining care of older parents or parents in law with other family and employment responsibilities. Other examples of attempts to differentiate between different types of carer include research looking at those caring for someone with a particular health problem, such as dementia,4 stroke,5 or Parkinson’s disease,6 the impact of kin relationships, such as being a daughter or spouse carer,7, 8 and the ways in which carers’ demographic characteristics such as ethnicity9–11 or sexuality12 impact upon experiences of caring.

Conceptually, definitions of caring go beyond merely providing assistance with tasks such as shopping or bathing that people are unable to carry out independently by themselves.13 Caring almost always takes place within pre-existing relationships and there are likely to be strong ties of affection or obligation14, 15 which strongly influence how older people and their carers respond to clinicians’ recommendations about future care options, particularly when these involve a possible move into long-term care.

Distinctions Between Paid and Unpaid Caring

The appropriation of the term ‘carer’ or ‘caregiver’ to describe paid workers has meant that the prefix ‘family’ is increasingly added to the words carer or caregiver to differentiate between those with paid and unpaid roles. Even when family carers and those for whom they care are not biologically or legally related to each other, they often regard themselves as fictive kin, meaning that they may describe themselves as, for example, husband or wife, as if they had the actual relationship implied by the title. The term ‘informal carer’ was once used quite widely but family carers and organizations representing family carers criticized its failure to reflect the reality that so-called ‘informal’ carers provide the overwhelming majority of assistance to those in need of support. This is illustrated by secondary analysis of data on a representative sample of the older UK population which showed that 80% of those needing help with domestic tasks or activities of daily living such as washing or dressing received support only from members of their family, friends or neighbours with just 20% receiving help from any type of paid worker or volunteer.16

While this chapter is concerned with the support provided by family carers or caregivers, it should be recognized that blurring between paid and unpaid care does occur. For example, in the case of intergenerational transfers, older people may provide resources to adult children or grandchildren in return for care. Alternatively, a person originally employed to do domestic work may, over time, take on more and more caring tasks should their employer begin to require help with activities of daily living, such as washing and dressing. In instances such as this, the two may develop close ties that go beyond the traditional relationship between employer and employee. The introduction of ‘cash for care’ schemes through which family carers of older people receive a cash grant which can be used to pay for care in many countries in the more developed world has shifted the boundaries between the two further.17

Changes to the Way’ Carer’ and ‘Caring’ are Conceptualized

More recently, some commentators, especially those associated with the disability movement, have challenged the assumptions underpinning the words ‘carer’ or ‘caring’, criticizing its construction of people needing assistance in their daily lives as ‘dependants’ or ‘recipients of care’ and calling for new paradigms that reflect the realities of the reciprocities between carers and those for whom they provide support.18, 19 Thus, while ‘carer’ and ‘caring’ remain useful shorthand words to describe the range of support that is given in the context of relationships of kinship or affinity, they are not value free and may be interpreted in a variety of ways.

Legal Frameworks

As Chapters 143–148 which describe different healthcare systems throughout the world show, variations in legislative and funding arrangements impact upon the type of assistance received by older people and their carers. In some countries, increasing recognition of the role played by carers has resulted in new legislative entitlements. These are not in themselves guarantees that carers will receive all the help that they need but they do influence the type of support that multidisciplinary geriatric teams can call upon when arranging care for their patients. In the UK, three pieces of legislation: the Carers (Recognition and Services) Act 1995; the Carers and Disabled Children Act 2000; and the Carers (Equal Opportunities) Act 2004 have given those defined as providing ‘regular and substantial’ care the rights to have their needs assessed and to receive services in their own right. In Australia, while there is no national legislation to protect carers, several states have introduced their own legislation, for example the South Australian Carers Recognition Act 2005. In Germany, the introduction of long-term care insurance (Pflegeversicherung) has improved the position of carers20 while, in Finland, carers are entitled to cash benefits in return for a contractual agreement to provide a certain amount of care.21 Carers may also have rights arising from employment or equalities legislation that protects them from discrimination arising from their status as carers. However, this picture is very variable and much may depend upon the extent to which family members are held legally responsible for the care of their older members and the existence of some policies which can actually penalize those who are providing care because the person for whom they care then loses his or her rights to support from statutory sources.22

Even when there is no legal obligation to assess carers’ needs, good practice dictates that geriatric assessments also include an assessment of what support is provided by family carers and how they are managing. Carers’ assessments need to identify, first, what support carers are providing and secondly, their feelings about how they are managing their caring role.

Typologies of Caring

The gerontological and caregiving literature established some time ago23, 24 the nature of the inter-relationships between older people’s needs, the extent and type of support they receive from family caregivers, and how its availability affects the need for support from ‘formal’ services such as home care (home health aides), sheltered accommodation and extra care housing (assisted living) and long-term care. In summary, it demonstrates that while friends and neighbours are likely to provide help with transportation, housework and shopping, it is rare for them to provide support with more intimate or personal activities, such as washing, bathing, or assistance in eating and drinking. Furthermore, where an older person has extensive support needs, for example if they are unable to be left alone for more than a few minutes (sometimes described as ‘critical interval needs’),25 it is generally only those carers who live in the same household as the person for whom they care or who live nearby who are able to provide this level of help. Most often, the majority of caring is undertaken by one person on his or her own (the primary carer), although ‘secondary’ carers may be involved. The most frequent example of a secondary carer in North American, European and Australasian societies is an adult daughter living apart from her parents but who supports one parent caring for the other. In Asian countries, the role of primary carer would traditionally be taken by the daughter in law. Where carers are providing help without any assistance from other family members or friends they are described as ‘sole carers’.

It is important to establish exactly how much help carers provide on a daily basis and if other family or friends are providing any other assistance. As with comprehensive geriatric assessment (see Chapter 112) and assessment of residents in long-term care, carers’ assessments need to be multidimensional in order to reflect the profound and far-reaching ways in which caring affects people’s lives.

A theory that has been profoundly influential in the literature is the Stress Process Model26 which distinguishes between objective stressors, that is, those factors that are attributable to the disease or disability in the person cared for, for example needing help to get washed or dressed, and subjective stressors, the extent to which the carer perceives these problems as causing them stress. The next subsections summarize some of the key areas that have been associated with carer stress. However, it is important to recognize that this process should not merely focus on deficits, such as the absence of social support, but should also take account of the strengths that carers may have,27 such as their sense of determination or motivation.

Increased Risk of Psychological Ill Health

The effects of one person being almost wholly responsible for another person’s care over time are considerable. While it is difficult to demonstrate direct causal relationships between caring and psychological health, there is strong evidence from both the United States (US) and the UK that some carers are in poorer psychological health than their age- and gender-matched counterparts in the general population.28, 29 Strikingly, the prevalence of psychological ill health among carers is associated with more intensive forms of caregiving, such as caring for a person in the same household and caring for more than 20 hours a week.29

An important message from this research is that clinicians should not assume that all family carers are at risk of psychological ill health but should aim to become more effective at identifying those family carers who are at greater risk of experiencing difficulties than others. In particular, clinicians need to be aware that while many family carers derive satisfaction and pride from their contribution, and wish to continue caring, there are circumstances in which the difficulties they face may outweigh the positive aspects of caring.

The Impact of the Cared-for Person’s Health Needs

Earlier chapters in this book have described the impact of long-term health problems such as dementia and other cognitive disorders (see Section 7), stroke (see Chapters 57 and 58), and Parkinson’s disease (see Chapter 63). In addition to the way that these diseases impact on the lives of those older people directly affected by these conditions, research suggests that high levels of difficulty are reported among those caring for a person with dementia30 or Parkinson’s disease6 and following a stroke.31 Where the clinical picture also includes behavioural problems and aggression, then additional stressors may also be experienced.30

Physical Health

As the opening quotation to this chapter showed, adult child or spousal caregivers of persons receiving geriatric healthcare are themselves likely to be older and at risk of age-associated health problems of their own. Poor physical health in carers does not necessarily result in poor psychological health but the deleterious effects of ill health seem to be most pronounced among older carers who may already be experiencing poor psychological health.30

Specific problems reported by carers include acquiring back pain from lifting or aggravating the pain of arthritis as a result of helping someone else wash and dress. Caregiving has also been found to be associated with reduced functioning of the immune system,32 meaning that carers may be more vulnerable to, or take longer to recover, from illness. However, despite high levels of physical frailty among many family caregivers, healthcare providers may actually have increased expectations about the tasks that they ask family caregivers to provide. There is some evidence that improved health technology has meant that many carers are undertaking tasks that in the past would have been undertaken by nurses or healthcare assistants.33

Financial Aspects

Efforts have now been made to quantify the contribution made by family carers in terms of the costs of replacing family care with paid care and in the opportunity costs to carers as a result of their reduced opportunities for employment and leisure. For example, a report on dementia expenditure in the UK34 concluded that dementia cost the UK economy around £19.7 billion per year (approx. US$30 billion). Of this, almost half could be attributed to the contribution made by family carers. On an individual level, carers may incur extra expenditure to pay for equipment, services, heating and clothing. In addition, they may give up paid employment, forego promotion prospects, or retire early. While women are still likely to be affected more severely than men, particularly in terms of being able to build up savings and a pension in retirement, this is an issue for both genders.35

Social Support