Living on the margin: Understanding the experience of living and dying with frailty in old age

Abstract

Within policy and practice there is an increasing interest in the care of frail elders. However understanding of the experience and challenges of living and dying with frailty in older age is currently undeveloped. Frailty is often used as a synonym for the increasing infirmities that accompany ageing and the slow dwindling dying trajectory of many elders. However, there is little empirical work on the experience of being frail to inform social gerontological perspectives and welfare provision. Through analysis of repeated in-depth interviews over 17 months (2006–2008) with 17 frail elders living at home in the U.K., key factors that shape elders’ experience of being frail emerged. The study argues that the visible markers of functional limitations and the increasing social losses of old age bring finitude to the fore. To retain anchorage in this state of imbalance, frail elders work actively to develop and sustain connections to their physical environment, routines and social networks. This experience can be conceptualised as persistent liminality; a state of imbalance “betwixt and between” active living and clinically recognised dying. This paper highlights the precarious and often protracted dying trajectory of frail older people. Whilst it could be argued that developing into death in older age is part of a normal and successful course after a life long-lived, recognition of and support for older people deemed frail is lacking. Frail elders find themselves living in the margin between the Third and Fourth Age with little recognition of or support for the work of living and dying over time. This experience of frailty contests dominant cultural and welfare practices and policy frameworks that operate in binary modes: social or health; independent or dependent; living or dying.

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.