Introduction

In this chapter we explore the concept of caregiving. Although used often, caring is a complex term and encompasses a range of roles and definitions, for example nursing has frequently been described as the ‘caring profession’. There are a range of formal carers and caring services and you may already be familiar with some of these during your placements – in fact, nursing is one of the formal caring services. Caregiving also encompasses unpaid carers and this group of carers comprises a range of groups and individuals, for example voluntary services, friends, neighbours and family.

Such caring may be intergenerational, for example adult children caring for older parents or relatives, or within generations, for example spouses, partners and relatives. However, we are also mindful that in reality, as we have mentioned, caregiving is inherently complex and traverses many boundaries, especially between formal care and care provided by family and friends. The latter will be referred to as family care for the remainder of this chapter.

When considering the issues involved in family care, we also consider the role of professionals and, more particularly, your role as a nurse in respect of working with family carers. We will also explore some of the assumptions that pervade caregiving as a whole.

Family care

As we noted in the introduction, caregiving and informal care is a complex topic area. Until relatively recently, however, little was known about the particular situation or experiences of family carers and care recipients – often because much of informal caring has been undertaken in the home and is therefore largely hidden.

While the focus of this chapter centres on UK perspectives, we are also mindful of cultural and global experiences of caregiving and, as we have already noted in earlier chapters, the UK has an ageing population and this is reflected globally.

The World Health Organisation (WHO), for example, has identified that ‘the proportion of people aged over 60 years is growing faster than any other age group, as a result of both longer life expectancy and declining fertility rates’.

Before we move on to focus on caregiving in the UK, we briefly consider the impact of global ageing within the context of shifting patterns of family composition in terms of caregiving across populations. For example, the WHO has made the following observation:

Many changing social patterns are likely to influence both the behaviours and well being of older people. One common trend during economic development has been for a shift from extended households to more nuclear households comprising one or two generations. For example, in Japan, the proportion of people living in 3-generation households has fallen from 46% in 1985 to 20.5% in 2006.

(http://www.who.int/ageing/en/index.html)

This is an important observation with regard to the way in which broader economic and social change has the potential to impact significantly with regard to caregiving responsibilities across a range of settings. You may also be able to think of other examples from your own observations and experiences where informal support structures and networks are undergoing change and consider how this might affect caregiving for older people. It is important when reading this chapter and in your encounters with carers that you are mindful of different patterns and experience of caregiving in different situations, cultures and circumstances.

To put the scope of caring into context, it has been estimated that nearly 6 million people in the UK provide unpaid (informal) care for a close relative or friend on a regular basis. Approximately 3 million of these are aged over 50 years and together they provide more than £15 billion in care every year (Age UK 2010).

As we have already noted, with projections of significant increases in the number of potentially frail older people both nationally and globally, the profile of family care has been raised and as such is an important issue for nurses and allied professionals to consider and engage with as part of everyday practice.

Historically, the contribution of unpaid carers has been associated with a better quality of care for many people and significant cost savings to the state (Royal Commission on Long Term Care 1999). However, conversely, there is also evidence that caring for a friend or relative has a significant impact on the health and wellbeing of the family carer.

While being cognisant of global perspectives, this chapter explores some of the societal and policy trends in the UK that have affected the way in which families care for their older relatives. However, as we have discussed in earlier chapters, older people do not form a homogeneous group and therefore a number of factors may impact on the expectations of both the caregiver and care recipient and we ask that you are mindful of this when working with older people both as carer and with their carers. We also discuss the potential impact of caring on the individual and the factors that might mitigate against the more difficult elements. Finally, we consider the ways in which professional carers might help to support and improve things for informal carers.

While you are on placement and working with and caring for older people, it is probable that at some point you will also meet a carer. Carers can be what might be termed ‘formal’. Formal carers are paid to undertake a particular caring or support role. The role of formal carer may encompass a range of activities and locations, for example caring for someone in their own home or institutional setting. When working with older people, however, you are also likely to meet ‘informal’ or ‘family carers’. Take a few moments to consider what we mean by the term ‘family carer’. You may also wish to consider who is likely to be undertaking this role. If you have already met informal or family carers on your practice placement, you may also wish to reflect on their role in the care of the older person in the setting you encountered, either directly or through involvement in the care planning or the assessment process.

Activity

Make a list of the formal and family carers that you have encountered while on your placement. Next to each of the titles, note the role of occupation of each of the carers you have identified. Consider how they have been involved in the care or plan of care (this might include discharge planning) for the older person. Do you think that involvement was effective? How could it be improved? Are there any issues of involvement, for example consent or confidentiality?

This exercise could form the basis of a goal to be achieved in relation to achieving competence in the development of your own nursing practice, decision making and care management when working with older people.

Societal and policy trends in family caregiving

Historically, family carers have been appreciated but largely ignored by government policy makers. For much of the period after the Second World War, the unquestioned assumption was that support for older people in the community would be provided by (female) family members (Lewis & Meredith 1988). As late as 1981, the White Paper Growing Older emphasised that ‘Care in the community should mean care by the community’ (Department of Health (DoH) and Social Security 1981). There was a reluctance to offer services to support carers as it was feared that, as services became available, family members would withdraw from caring (Qureshi & Walker 1989).

More recently, there has been a recognition that it is in the interest of government to offer support to family carers. One of the main assumptions that lay behind the NHS and Community Care Act (DoH 1990) was the acknowledgement that most people prefer to spend their later years in their own homes supported by community services rather than spending the time in a care home. This change in attitudes led to the publication of the National Strategy for Carers (DoH 1999) and the passing of the Carers and Disabled Children Act (DoH 2000). This identified three broad strategies with the aim of supporting family carers (DoH 1999):

1. Information: so that carers are well informed about the help and services that are available to them.

2. Support: so that service providers are sensitive to the needs of carers and view them as partners in the provision of help to the person needing care.

3. Care: access to an assessment of need, even when the person needing the care declines to have such an assessment, and the provision of support to meet the needs identified in the assessment.

This has meant that, when service providers arrange support for older people living in the community, they need to recognise any family member or friend who is supporting the individual, consider their needs as well as the older person who is living in the community and offer services to meet their needs. Subsequent to this, further policy initiatives have been introduced relating to family carers. The Community Care (Delayed Discharges, etc.) Act (DoH 2003) requires NHS organisations to consult with patients and family carers about the possibility of referral for community services and requires that an assessment of the needs of the carer be conducted, if the carer requests it, or if they have asked for one within the previous 12 months.

The rights of the family carer to an assessment were extended with the passage of the Carers (Equal Opportunities) Act (DoH 2004). This states that, should a family carer qualify for an assessment under the Carers and Disabled Children Act (DoH 2000), the local authorities have a duty to inform the carer of this right. In addition, such assessments needed to include consideration of whether the carer worked or wished to work and of their desires to undertake education, training or leisure activities.

Obviously, these policy initiatives have been followed by a period of significant reductions in public expenditure which means that local and health authorities have had to identify their priorities in the services that they provide. This means that there will be family carers who would have received support when the relevant legislation was introduced who are a lot less likely to do so now. However, as noted earlier, it is recognised that family care saves the state a significant amount of money and it remains government policy that health and social care professionals should continue to work with family carers and offer support where possible. The national policy perspective with regard to informal carers is constantly changing and developing in scope. Therefore, we have provided the details of the Department of Health Website that is specifically designed for the topic of caregiving at the end of this chapter and you can use this as a point of reference for assignments and general information regarding the development and changes in national policy and support throughout your course.

The impact of caring on the individual

A wealth of literature has been published considering the negative effects of caring for a relative, especially if that relative has dementia. On the whole, this suggests that such caring is stressful and has negative implications for the health of the family carer. However, this is a gross generalisation. There is a need to consider the nature of the health issue that has resulted in the need for family care. In addition, there is evidence to suggest that family carers can face situations that, on the face of it, appear to be very similar yet some people find things very stressful while others less so (Ayres 2000). This section explores a few of these issues in a little more detail.

Activity

Identify a family carer in your clinical setting. Discuss with you mentor whether or not it might be appropriate to talk to this family carer about their experience of caring. If you agree that it is appropriate, find out if they are willing to talk to you. You might ask him or her when they consider that they started caring, whether or not there are any difficulties with doing it and the extent to which they get any pleasure or satisfaction out of caring. Finally, you might ask what they as a carer would like nurses to do differently when dealing with the person they are caring for. Once you have done this, write a reflection on the conversation and put it in your portfolio.

Many educational institutions promote the involvement of service users and carers in student assessment (this is part of the Nursing and Midwifery Council (NMC) standards 2010 requirement), and many now include an evaluation form to be completed by a service user or carer in the practice setting. If appropriate (you may wish to check first with your personal tutor or mentor), you might ask for a carer to complete one on your contribution to their relative’s care as part of the evidence for the achievement of a particular practice outcome. Your mentor may be required to sign this as evidence that this took place.

It is important, however, to make sure that this portfolio entry has been anonymised to ensure confidentiality.

When considering the nature of the health problem and its impact on the role of the carer, it is important to consider how this caring might be experienced. Rolland (1994), for example, has identified a few particular features of health problems that have an impact on how family carers might experience caring. This is outlined in Table 12.1 and an explanation offered for each category follows.

Table 12.1 Features of health problems that have the potential to affect family carers

Feature of health problem	Alternatives
Onset	Acute Gradual
Course	Progressive Constant Relapsing
Outcome	Non-fatal Shortened lifespan Fatal
Type and degree of incapacitation	Mild, moderate or severe Physical, psychological or social