Living with Frailty

From Assets and Deficits to Resilience

Shibley Rahman

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781351402101
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Increasingly, we question 'what makes us healthy?', as well as 'what makes us ill?'. What does this shift mean for frailty? Almost wholly defined in negative terms, the term 'frail' tends to refer to a group of older people who are at highest risk of adverse outcomes such as falls, infections, disability, admission to hospital or the need for long-term care. This ground-breaking book takes a holistic approach to frailty. It connects the medical literature with the wider social science discourse on ageing, and focuses on promoting wellbeing and the building up of strengths.

Living with Frailty draws together the latest biomedical evidence and good practice in this emerging area and explores ideas about assets and resilience, the role of society and the social model of disability in relation to frailty, arguing that insufficient attention is paid to positive action such as developing bone strength, maintaining good nutrition and exercising. Chapters look at:

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• existing models of frailty

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• person-centred care

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• assessing frailty and quality of life

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• how falls, and fear of falls, relate to discussions of frailty

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• delirium and frailty

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• the environment and frailty

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• sarcopenia.

Living with Frailty is an important introduction and reference for all practitioners, researchers and students with an interest in frailty, wellbeing and social approaches to health.

Forewords by Professors Ken Rockwood, Dalhousie University, and Adam Gordon, Nottingham University.

1

FRAILTY

From awareness to identity

Aim

In this chapter, I’d like to look at what frailty actually is, and how its identity is rather ambiguous when considering whether it is a description of health or illness. I will briefly review methods for its measurement, and consider how a more holistic view of frailty necessitates a consideration of health and community assets and capabilities, as well as deficits.

Introduction

Research can be like panning for gold: you go through a lot of dirt before you find a nugget that can be useful.

Frailty is a complex and multidimensional state linked to other concepts including multimorbidity, disability, dependency and personal resilience. Understanding what frailty actually is has come on leaps and bounds, and this means we are now in a position to raise awareness of it. The ‘accumulated deficits approach’, a highly respected model (and rightly so), tends to be emphasised most of all, but it is increasingly clear that a narrative simply based on deficits cannot give the complete story, perhaps. An understanding of deficits is necessary but not sufficient. Scientific progress in frailty has been arguably somewhat hampered, however, by the lack of consensus on its definition, which in turn delays development of screening and diagnostic tools, as well as treatment (Rodríguez-Mañas et al., 2013). Some progress, however, has been made in recent years. Frailty, notwithstanding, is a complex interplay of a person’s assets and deficits as a result of the combination of factors such as age, gender, lifestyle, socioeconomic background, comorbidities and affective, cognitive or sensory issues (Lang et al., 2009; Rockwood and Hubbard, 2004). All these factors have to be put into the ‘melting pot’ if we are to understand how frailty develops.

In thinking about one’s reaction to ‘frail persons’, it is impossible to ignore that various examples in the 1960s represented a potent expression of a deep political and social disaffection at certain identities (Bayer, 2008). It was within this context that we must understand the powerful impact of Erving Goffman’s work Stigma (1963) that spoke powerfully of individuals who stood as ‘discredited person[s] facing an unaccepting world’ (p. 19). In medicine, there is a tradition of presenting certainty about the diagnosis. The danger of presenting ‘frail elders’ as an underclass with no rights, to be oppressed, is a very nasty one. In domains of medicine, there is a sense of ‘scientificness’ to the activities of diagnosing that imbue the term of ‘diagnosis’ with a kind of reverence (Hayne, 2003). Acquiring a medical diagnosis is often accompanied by a sense of having been seen through ‘officially’ by ‘one’ who truly knows and in an authoritative way can pronounce on one’s state of functioning. But labelling someone with a diagnosis can also have its problems and unintended consequences. For example, Bjorklund (1996) suggests that receiving a psychiatric diagnosis goes much beyond acquiring knowledge about functioning, in that the diagnostic label becomes a ‘transforming influence’ actually to shape ‘present and future life expectations’ (p. 1329).

Deficit models focus on identifying problems and needs of populations requiring professional skills and resources, potentially resulting in high levels of dependence on hospital, social care and welfare services. They can therefore be financially costly. In contrast, asset models tend to accentuate positive ability, strengths, capability and capacity to identify problems and activate solutions, which promote the self-esteem and motivation of individuals and communities, leading to less reliance on professional services. In reality, of course, both are important – one needs to redress the balance between the more dominant ‘deficit model’ and the less well known (and perhaps less well understood) ‘asset model’.

Labelling services as ‘frailty hubs’ with ‘frailty checklists’ may, of course, pull the pendulum away from the person to the power of the diagnostic label and the ‘disease entity’. So the narrative inadvertently becomes one of ‘frailty in bed six’, away from personhood. But the depersonalisation and ‘efficiency’ of modern medicine are often blamed on ever mounting time pressures and a focus on delivering technically appropriate evidence-based care (Chochinov et al., 2015). Lay and professional literature converge upon a common theme, that people do not want to be treated merely as diseases. Various movements, such as dignity-centred medicine, spirituality and health, and palliative care, have rightly been advocating for more whole-person models of care (Puchalski and Jafari, 2015).

This, I feel, is in fact a central issue in the development of the ‘frailty concept’.

Frailty has been recognised as an important condition by the Institute of Medicine and the European Union, although a consensus conference held in 2011 concluded that, while frailty has a clear conceptual framework and is useful in clinical settings, there is no single operational definition of frailty that can satisfy all experts and more research is needed (Orlando Frailty Reference Group, 2013). Seeing individuals as a whole person, with both mental and physical health needs and social needs, will arguably deliver better patient care and improved outcomes. Leading an engaging, meaningful and satisfying life is an essential part of ‘successful ageing’ (Rowe and Kahn, 1998; Rowe and Kahn, 2015; Steptoe et al., 2015). Up until the 1960s, the prevailing theories of the ageing process considered older age to be a progressive, linear decline towards death (Cumming, 1968). Studies into contributors of ‘successful ageing’ highlighted instead healthy lifestyle (physical activity, nutrition), environmental enrichment and stress avoidance, and methods to preserve cognitive function by measures that promote neuronal plasticity (Woo, Leung and Zhang, 2016). The use of the word ‘successful’ is fraught with difficulties, as the opposite implies failure and potentially fault, so a narrative of healthy ageing has emerged.

Current healthcare systems are built around the traditional paradigm of patients diagnosed with a single acute illness, and don’t deal with complexity or multimorbidity well. They are, therefore arguably, largely unprepared to face the increasing demands from patients arising from the expansion of an older population with specific medical needs related to multiple chronic disorders (Le Lain et al., 2017). Geriatricians, in contrast, largely see frailty as an individual’s increased risk of adverse outcomes; this risk often varies with age (Howlett and Rockwood, 2013). ‘Frailty’ is a long established clinical expression that implies concern about an elderly person’s vulnerability and outlook (Clegg et al., 2013), but there has perhaps been a striking reluctance to scrutinise what precisely makes patients ‘resilient’. Modern healthcare now needs to reconcile itself to complex patients (Rockwood and Hubbard, 2004). Because older adults are more likely than younger individuals to have complex care needs which affect daily living, this population has increasingly become a priority target group to receive and benefit from integrated person-centred care (Kogan et al., 2016).

A person living with frailty is not simply the sum of constituent organ-specific failures. Despite an increase in interest in frailty, the pathophysiological changes underlying and preceding frailty are not clearly or fully understood yet. Inflammation is one such potential pathophysiological change which may be closely linked with frailty (Chen et al., 2014). Pro-inflammatory cytokines may influence frailty, either directly by promoting protein degradation, or indirectly by affecting important metabolic pathways (Lang et al., 2009). The association of inflammation with frailty seems consistent across different frailty definitions (Hubbard et al., 2015). Thus, inflammation-related biomarkers might be powerful predictors of frailty and mortality in the elderly (DeMartinis et al., 2006), and this phenomenon is referred to as ‘inflamm-aging’ (Franceschi et al., 2000).

The case for better awareness of people living with frailty and of their care partners

There is, as yet, no multimillion pound campaign run by a big charity called ‘Frailty friends’. Heightened awareness, together with financial constraints, give an opportunity to develop cost-effective, high-quality care for ‘older’ people, resulting in better outcomes and an improvement in long-term care planning. Ongoing research programmes, together with developing productive networks, ties and collaborations, might possibly lead, in time, to a portfolio of tools or instruments to aid the non-specialist in recognising and managing patients who are frail (Wyrko, 2015). Not everyone of the same age has the same risk of adverse health outcomes. The greater vulnerability of some people compared with others of the same chronological age is best understood through frailty. But there has been an element of accelerating momentum to ‘deal with frailty’ through the generation of a moral panic reminiscent of other previous health issues: for example, ‘by attacking AIDS-related stigma, we create a social climate conducive to a rational, effective, and compassionate response to this epidemic’ (Herek and Glunt, 1988, p. 890).

The potential link between frailty and cognitive and affective processes is of interest in the context of what has been described as the ‘frailty identity crisis’. This sense of ‘crisis’ has been proposed to occur when challenging transitions from independence to frailty are accompanied by somewhat maladaptive psychological responses (Fillit and Butler, 2009). Affected individuals are said to experience a crisis of identity and a decline in psychological wellbeing, as they are faced with losses in health and independence that mark the transition from fitness to frailty. This is a provocative idea which has to date received relatively little empirical attention, and surprisingly so (Andrew et al., 2012). The similarity to what happens on a disclosure of dementia diagnosis is striking. People at a particular age who, in consequence of multisystem impairments, are at higher risk of dying are said to be ‘frail’ while those at lower risk are said to be ‘fit’ (Clegg et al., 2013). Self-determination can be defined as a process in which a person has both control and ethical/legal rights, and has the ability and knowledge to make decisions of his/her own free choice. The possibility to exercise self-determination in daily life is also an important condition for older people’s subjective health and wellbeing and an ability to exercise independence (Ottenvall Hammar et al., 2014). Geriatric syndromes are associated with poor quality of life and negative health outcomes. Their management is today challenging, so that recognising pathophysiological mechanisms and associated factors might help physicians to deal better with them (Vetrano et al., 2016).

Fewer social resources (e.g. smaller social networks, loneliness and lack of social support) are associated with negative ageing perceptions (Steverink et al., 2001) and frailty (Gobbens et al., 2010; Woo et al., 2005). In practical terms, it is fundamental to know what support, services and resources are available for families and care partners, including practical and emotional support services, and know how to access them (see, for example, ‘Support for carers’ from ‘Frailty Focus’¹), or how to arrange a ‘carer’s assessment’ under the Care Act 2014.²

The Care Act 2014 gives local authorities a responsibility to assess a carer’s need for support, where the carer appears to have such needs.³ When the carer’s assessment is complete, the local authority must decide whether the carer’s needs are eligible for support from the local authority. There is, however, a potential for dilemmas arising where there are differing needs and priorities between people living with frailty and their carers; these have already been clearly articulated for dementia.⁴ In the community, ‘personalised health and care’ might be promoted through the use of personal health budgets (see, for example, NHS England, ‘Personal Health Budgets’⁵), and devices such as lasting powers of attorney for health and financial decisions might be important for carers if persons livi...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Figures
• Tables
• Foreword I (Ken Rockwood)
• Foreword II (Adam Gordon)
• Preface
• Acknowledgements
• 1 Frailty: from awareness to identity
• 2 Living well with frailty: from identity to care
• 3 Evidence-based practice in frailty: falls and activity
• 4 Surgical outcomes, cognitive frailty and delirium
• 5 Sarcopenia and frailty
• 6 Interventions in frailty care and enhancing independence
• 7 Person-centred integrated care and end of life
• Afterword
• Index