Introduction

In light of the world’s ageing population, and the desire of most older people to remain within their own homes for as long as possible, international trends in the provision of health and social care have seen a shift away from institutional services to a policy of community care or ‘ageing in place’. With the widespread recognition that the vast majority of the care that older people need is provided by the family, the profile of so called ‘family carers’ and services to support them has been raised significantly (Glendenning 2003). Indeed support for family carers is now a ‘global’ issue (Stoltz et al 2007), but despite increased attention, policies generally remain fragmented and weak (Glendenning 2003). Furthermore, such services as are provided are primarily intended to reduce carer burden (and thereby implicitly designed to ‘keep carers caring’) and are narrowly conceptualised, being largely of a practical and instrumental nature (Stoltz et al 2004, 2007). The provision of such support belies the complexity of the issues involved and services often do not reflect what carers want or need (Stoltz et al 2004). Significant proportions of the population are, or at some point in their lives will be, carers. For example, in the UK it is estimated that 11% of the population (approximately 6 million people) are carers, and this percentage increases with age, as does the relative population of male carers (Carers UK 2005). Clearly, therefore, providing adequate and appropriate support for carers is not just a policy priority but one in which all people potentially have a personal stake.

However, providing appropriate support is not straightforward as the lives, circumstances and availability of carers are influenced by a range of factors. The issues are not limited to concerns about increased longevity and the greater numbers of people surviving with long-term conditions, albeit these are major influences; they are also complicated by rapid changes to health and welfare systems; more sophisticated consumer expectations; constantly changing patterns of work, family life and migration (Yeandle & Buckner 2007); re-marriage (Sharman & Boss 2007); and the emergence of new forms of support such as assisted living (Gaugher & Kane 2007). As the circumstances of carers are so varied and diverse, support services need to reflect this complexity (Pakenham et al 2005) but yet they so rarely do.

In this chapter we will briefly review a number of conceptual, methodological and practical issues to do with the provision of appropriate support for family carers, arguing that it is essential to develop more sophisticated models that are both relational, recognising the complex interdependencies inherent in caregiving, and dynamic, so that services are responsive to differing needs as they unfold over time. New ways of thinking are required because, despite an extensive research policy and practice literature on family care, the field is characterised by ‘constant advances in theory, methods and interventions’ (Whitlach & Feinberg 2007). Those working with family carers need to ensure that services keep abreast of such developments.

Conceptual issues in family care

As noted above, family care is a complex issue that has been extensively researched over the last 30 years (Fortinsky 2001). It is therefore not possible to explore all the resultant literature in detail. Rather, what we will do here is paint a fairly ‘broad brush’ picture that nevertheless highlights what for us are the key debates in relation to the provision of support for family carers.

Studies exploring the circumstances, experiences and support needs of family carers have proliferated, particularly in North America, certain European countries, notably the UK, and Australasia. The subject was ‘hardly mentioned’ in the 1960s (Brody 1995), and yet by the 1990s family care had become one of the most researched areas in the field of social gerontology (Kane & Penrod 1995). This ‘explosion’ in research activity (Fortinsky 2001) has generated a ‘voluminous literature’ (Schulz & Williamson 1997), much of it focusing on interventions designed to maintain family carers in their role whilst the older person is living in the community.

In the institutional setting, the challenges of engaging family carers have also been well documented. Haesler et al (2007) examined the research over the last 15 years that reported on staff–family relationships in the care of older people in hospital, subacute, rehabilitation and long-term care. Their systematic review highlighted a number of key areas that are critical to supporting the relationship with family carers. These include acknowledging the uniqueness of the older client; providing information and emotional support; facilitating open, two-way communication that is responsive to the family’s needs; and recognising that some families place great value on collaboration in care, and that conflicting staff and family perspectives on their role will ultimately lead to competitive relationships that are detrimental to care. The organisational practices that underpin and inform care delivery are of paramount importance as they will support, or impede, the role of family carers.

Yet despite the considerable research, there is still little evidence for the effectiveness of existing models of support (Braithwaite 2000; Cooke et al 2001; Pusey & Richards 2001; Thompson & Briggs 2000; Whittier et al 2002). Indeed Pruchno (2000) suggests that 40 years of research has ‘only scratched the surface regarding our understanding of the caregiving experience’, with Pearlin et al (2001) concluding that there remain ‘several unresolved issues’ surrounding how best to support family carers.

Such ‘unresolved issues’ are not only confined to questions about how best to support family carers, but also turn attention to some more fundamental concerns including how we define carers and understand their experiences; the impact of caring on their lives; the nature of their relationship with the person they support; and how such experiences and relationships change over time. Such questions are longstanding and contentious.

The way in which caring and carers have been defined is of central importance, as is the perceived impact of caring on carers’ lives. Whilst the theoretical debate on the nature of caring is extensive, there is little doubt that, from a policy perspective, caring has been defined largely in instrumental terms, being primarily to do with the type and amount of support that carers provide for the cared-for person. Whilst policies might pay lip service to emotional and psychosocial issues, the overriding focus is on the physical help, usually with activities of daily living, that carers provide. This has tended to result in a narrow view of what caring is about and a similarly narrow provision of services and support (Ott et al 2007). For example, even in the UK, which has the world’s most comprehensive statutory framework for supporting family carers, eligibility for support is confined to those carers providing ‘regular and substantial care’. This is usually equated to 20 hours or more of care a week. Such an instrumental approach belies the complex and nuanced nature of caring but is typical of the ‘stress-burden’ model that has dominated the conceptualisation of the caring experience, and significantly influenced the type of support that is offered to carers (Fortinsky 2001; Zarit et al 1999) and continues to do so (Sebern & Whitlach 2007). Consequently the reduction of carer burden has become a ‘major tenet’ of gerontological policy and practice (Zarit et al 1999) and is the most widely promoted goal of carer support. However, such an approach largely ignores the growing evidence that burden is not necessarily the only consequence of caring, or that caring is best defined in instrumental terms.

For example, over 20 years ago Bowers (1987) argued that carers see the provision of instrumental support as the least important and least stressful aspect of their role and that caring comprises several interrelated components, many of which are ‘invisible’ and deliberately kept hidden from the recipient of care. Bowers (1987) described several types of care, including:

Based on her grounded theory study, Bowers (1987) contended that family carers see protective care as the most important and stressful of their roles. In a later study (Bowers 1988) she argued that care continues after placement in a nursing home but that then the most important type of care becomes ‘preservative’ care, which involves family carers in attempts to ‘preserve’ the identity and individuality of their relative. This model was further developed by Nolan et al (1996) who suggested that (re)constructive and reciprocal care were important components that involve both the carer and the cared-for person as active participants in maintaining reciprocity in their relationship and reconstructing roles and relationships over time (see below for a fuller discussion).

This expanded model of caring has recently been subject to empirical testing in a large representative sample of carers in Sweden (Ekwall et al 2004), which found that significant numbers of people engage in anticipatory, preventative and supervisory care well before any physical help with activities of daily living is required. The study found, as Bowers (1987) suggested, that such help is kept hidden from relatives but is nevertheless a potential source of stress that can have a negative impact on carer wellbeing. Ekwall et al (2004) conclude that professionals need to develop a far broader view of caring if they are to provide appropriate and timely help.

The dominant and rather narrow focus on physical care and burden has recently been challenged by a growing body of evidence highlighting the potential for caring to provide sources of satisfaction and reward. Once again, this theme is not new but until recently the satisfactions of caring have been relatively ignored and overlooked in favour of the burden perspective. Over a quarter of a century ago Hirschfield (1981, 1983) wrote about the potential for carers to find ‘mutuality’ (gratification and meaning) in their relationship with the cared-for person, stressing that when mutuality exists relationships are far more positive and institutionalisation much less likely. Others have also focused on the potential satisfactions and rewards of caring (Farran et al 1991; Motenko 1989; Nolan et al 1996), and recently the evidence in favour of caregiving satisfaction is growing rapidly. For instance, Verbrugge and Chan (2008) contend that reciprocity and satisfactions are central to understanding family care, with Ott et al (2007) noting that the now extensive literature indicates that between 55–90% of all carers experience satisfactions in their role. A focus on such satisfactions can, they argue, provide opportunities for personal growth (Ott et al 2007) and make caring ‘life affirming and personally rewarding’ (Yeandle & Buckner 2007).

Moreover, because caring is often viewed as a largely female preserve there has been relatively less research into male carers, but they too can find it a rewarding role that enhances their lives, particularly when there have been good prior relationships with their partners and they are able to find meaning in what they are doing (Ruberio & Pául 2008). Others also highlight the importance of finding meaning to the maintenance of a strong intergenerational commitment to the caring role (Piercy 2007).

None of the above seeks to deny the difficulties that carers often experience, nor the potential for caring to be stressful and to impact negatively on carers’ health and wellbeing. Rather, as Cheung and Hockey (2004) contend, carers often experience their role as a series of paradoxes comprising losses and gains, vulnerability and strength. Consequently, it is important for professionals working with carers to have a far deeper understanding of both the gains and losses that carers experience if the most appropriate help is to be provided. What is now clear is that the experience of mutuality in caring can be ‘pervasive’ (Schumacher et al 2008) and that to cast caring primarily in terms of stress and burden is simply no longer adequate.

Another potential limitation of much prior research is that it has focused primarily on the experiences of one person (usually the carer) and that such experiences have been largely conceptualised in negative terms (Sebern & Whitlach 2007). This was eloquently explored several years ago in a seminal contribution from Kahana and Young (1990). They argued that existing models of caring were largely static and unidirectional, focusing on the predominantly negative impact of caring on the lives of carers. They called for the development and testing of more dynamic and relational approaches that recognised the potentially positive and negative effects of caring for both the caregiver and the care recipient, with such experiences changing over time. They highlighted the need for a far better appreciation of the ‘dyadic’ relationship between both parties. They also suggested that if services were to respond appropriately then ‘triadic’ models, which included relationships between family and formal caring systems, are required in order to better capture the dynamic, interactive and contextualised nature of the caring experience.

Such models are now being developed, although until recently there has been very little attention paid to the experiences and contributions of the care recipient (Litvin 2000; Lyons et al 2002). This is rapidly changing.

Much of the current work is being undertaken in the field of dementia care, with it being argued that to explore the needs of the person with dementia (PWD) and their carer (usually a spouse) as individuals is inadequate, and that instead they should be understood as ‘living in relationship’, with all the historical and biographical context that this brings. Others too have argued that, especially for partners, ‘couplehood’ is a better concept than personhood (Hellström et al 2005, 2007), and that support should be targeted at the ‘couple’ rather than at separate individuals, so that they can be helped to continue to find ‘meaning’ in their situation (Davies & Gregory 2007). Appreciating the nature of spousal relationships is further complicated by the growing number of ‘late life’ marriages where partners re-marry at an advanced age (Sharman & Boss 2007). This can result in complex dynamics within several families, especially when one partner subsequently develops dementia and the marriage is ‘radically’ foreshortened without the advantages of a long and stable relationship to build upon (Sharman & Boss 2007). Despite such challenges the authors conclude that more often than not, non-affected partners continue to provide the best possible care for their spouse but that their efforts are often hindered by resistance from their children or their partner’s children. Addressing such issues will not be straightforward but will nevertheless be an increasingly important consideration.

In addition to a more sophisticated appreciation of the complex nature of dyadic relationships in family care, several recent studies have added to our understanding of the role of the recipient of care. Previously such individuals have been cast in a largely passive role (Nolan et al 2003), but this is changing. For example, Sebern and Whitlach (2007) argue that there is a need to understand the dynamics of care from both perspectives in order that care-recipients can be helped to create a positive role for themselves, rather than be viewed as dependent individuals. This is important, as care recipients who feel unable to reciprocate are more prone to negative mood states (Sebern & Whitlach 2007). Similarly, Jo et al (2007) note that there has been very little prior work on how care recipients view their role, but that even at the end of life good communication and full discussion between both carers and care recipients can bring both parties closer together. However, this requires a differing approach from professionals, coupled with the ability to listen and promote continuity between the dyad. Cox et al (2007) have taken this reasoning a stage further and designed an intervention intended to promote the skills, attitudes and knowledge needed to be an effective and participative care receiver. They explored the potential for this in both one-to-one situations or groups of care recipients, with each intervention being based on 10 bi-weekly sessions of 2 hours. Both interventions enhanced the care-recipients’ levels of self-care and reduced their perceived loneliness, but the group intervention was especially useful in improving the relational coping between caregivers and care receivers, with improvements continuing for 12 months post intervention. Following a similar logic, Schumacher et al (2008) contend that there is a need to explore mutuality from the perspective of the care recipient, as well as the caregiver, and that the assessment of such mutuality should be a key component of professional support.

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