Living on the margin: Understanding the experience of living and dying with frailty in old age
Highlights
► Frailty in older age is a period “betwixt and between” active living and clinically recognised dying. ► Frail elders actively engage in creating and sustaining connections to manage their uncertain, protracted dying trajectory. ► Accumulated losses, including loss of social networks, militate against connection with health and social care services. ► Older frail people’s experience between the Third and Fourth Age can be conceptualised as persistent liminality.
Introduction
Successful identities of ageing are often related to the Third Age (Laslett, 1989); conceptualised as a time of extended consumerism, opportunity and activity in later life. Rowe and Kahn (1998, p. 433) suggest that successful older adults are those who demonstrate a low probability of disease and disease-related disability, high cognitive and physical functional capacity and a continued active engagement with life. Similarly, Baltes and Baltes (1990) equate optimal ageing with adaptation to the physical and social vulnerabilities of old age. However, in later writings these authors suggest the losses of late old age or the Fourth Age (at approximately aged 85 and over) become increasingly difficult to adjust to; ‘Living longer seems to be a major risk factor for human dignity’ (Baltes & Smith, 2002, p. 3). This social construction of the Fourth Age as a loss of agency and bodily self-control is often linked to frailty. Frailty is therefore frequently conceptualised as an antonym for successful ageing (Richardson, Karunananthan, & Bergman, 2011) a separating practice and a central term for those limiting conditions of the (ageing) body (Gilleard & Higgs, 2010a).
The social gerontological literature suggests that constructs of frailty are diverse. Gilleard and Higgs (2010b) posit that culturally those deemed frail have few self-empowering narratives. They argue that frailty is held within a social imaginary as a black hole, a socially void space into which older people are sequestrated away to decay and die. Thus within a social imaginary frailty, like a black hole, is both unknowable and a space from which there is no return.
Hockey and James (2003) argue that social identities in late old age can be conceptualised as liminal. Liminality (after Turner, 1974) is a threshold space, a transitional point between social structures. Such spaces are fluid, allowing for the potential redefinition of self-identity and can even be a position of power. Thus although older ‘liminal’ individuals are placed in an uncertain outsider status this social positioning can provide a space from which “weak” elders exert power. The vulnerability of old age can expose the very decline and dependency from which wider society seeks to distance itself. Thus identities are not fixed nor necessarily related to dominant understandings of a declining body. Grenier, 2006b, Grenier, 2007 develops this thesis in her work on the subjective experience of older frail people. She and others (Becker, 1994, Kaufman, 1994) argue that frail elders themselves differentiate between being and feeling frail. The label of frailty is actively resisted as elders distinguish between the body one is (self-identity) and the body one has – a physical, vulnerable, and objectified social identity.
Within Western welfare policy and practice frailty is increasingly used as a means of classification, to prioritise and fund care. Indeed, clinically frailty is often used as a synonym for the slow dwindling dying trajectory of many older people (Lynn and Adamson, 2003, Markle Reid and Browne, 2003). This trajectory is gradual and unpredictable, encompassing accumulated and multiple health problems which at some point tips the person into the dying phase. The drawn out, uncertain and dwindling process of dying with frailty is arguably at odds with dominant health and social care practices. Welfare provision separates people into either living or dying in order to determine care needs. An important but relatively small gerontological literature argues that this binary classification is unhelpful and misses the significance of older people’s experience of accumulated loss (Holman et al., 2004, Lloyd and Cameron, 2005). The links between dying and frailty in old age require much greater substantiation and development. However, there is little research into the experience of elders labelled frail.
This paper draws on findings from a longitudinal study of the subjective experience of being a frail older person living at home in the U.K. The aim of the study was to understand the experience of home-dwelling older people living with frailty over time in order to develop the empirical evidence base for this group and to consider more fully how narratives of frailty can shape person-centred care provision.
Section snippets
Methods
To capture the dimensions of social, psychological and physical frailty, the research design used a combined qualitative psychosocial method. Psychosocial research conceptualises experience as a constant and dynamic communication between internal psychological and external sociological dimensions manifest through unconscious or feeling states, and conscious communication (Hollway, 2004, Roseneil, 2006). Thus data collection and analysis takes account of emotions felt as well as words spoken.
Findings
In detailing the experience of frailty in older age it is important to note that nobody in the study used the term ‘frail’ to describe themselves or their situation. Indeed frail older people living at home are the survivors, outliving the majority of their birth cohort, and living outside institutional care. These are important considerations in stories where resilience and capacity were evidenced as well as the difficulties of an increasingly unreliable physical body. Protracted or
Discussion
The study findings argue that frailty is a persistent liminal state. Participants’ narratives capture the feelings of uncertainty and loss experienced with progressive physical and psychosocial changes and an increased awareness of finitude. Moreover older people’s stories revealed considerable capacity to create daily routinised practices to anchor themselves and sustain connections within their imbalance. However the study also reveals the problematic nature of finding shared meanings between
Study limitations
Whilst understanding that psychosocial theories are diverse and complex, this study aimed nonetheless to hold the tension between how both social and psychological entities mediate experience. Psychosocial interpretations of data may however be seen as placing interpretation on people and privileging micro processes over larger cultural structures which shape experience such as class and gender. Further, recruiting through an intermediate care team meant that all participants had had some
Conclusion
This study argues that frailty in later life is a state of imbalance in which people experience loss of both physical and psychosocial connections. Yet frail elders work actively to retain anchorage in this state of imbalance through developing and sustaining connections to their physical environment, routines and social networks. Crucially, the struggle for frail older people to retain the balance between loss and continuity is held within the wider context of the gradation into death.
Acknowledgements
The authors would like to express their gratitude to the participants who told their stories and their carers, both lay and professional who supported this process.
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