From living well to dying well with dementia: The significance of an expanded understanding of loss for end-of-life care

Abstract

As rates of dementia increase, the need for care is clear. Understanding what this looks like and how people might orientate the narratives and practices of care against a universally relatable version of success is less clear cut yet seems crucial if we are to progress towards an ideal of care that allows for a ‘good’ or ‘dignified’ death with palliative care. With this as a central focus, the paper examines the orientating principles that govern the current approach to dementia care. We map the evolution in academic theory from deficit-based models of care that identify impairments as a means to building resources to counter them, towards capacity-oriented approaches that focus on accommodating the new experiences that dementia brings. We describe how these frameworks are predominantly orientated towards early dementia, where they work to support people to live in an active and socially productive way, and how tensions arise when they are transposed to the end-of-life where decline and dependency are the dominant experience. Our analysis suggests that the current theoretical approaches to dementia care need to be thought of as dialectical in relation to the lived experiences of decline, dependency and loss. We argue that entertaining such a dialectic can offer insights into how the approach to end-of-life care in dementia might accommodate the presence of loss, tension and paradox in such a way that does not preclude success whilst offering wider social value. We conclude that further interventions that respond to the scale of need will only add further tension without first having some vision of where value might lie. Where conventionally dementia has been viewed through the reductionist lens of being either a biological or social challenge to which there should be a matching solution, it is perhaps more useful to look at it from the inside out, to learn the lessons that dementia and its associated vulnerabilities may hold for humanity. This, we suggest, may offer a route to knowledge progression in the field.

Keywords

palliative care dementia end-of-life care personhood citizenship fourth age

Introduction

In 2020, there were over 50 million people worldwide with dementia, numbers are expected to double every 20 years to reach over 150 million by 2050.^1,2 This reflects increases in the older population across the world.³

Rising rates now mean that dementia is the leading cause of death in the United Kingdom with a similar pattern anticipated for other high-income countries.⁴ Whilst the scale of the issue is well described, attempts to understand how we might move from the narratives and practices of living well with dementia to ones of dying well with dementia remain largely resistant to change.

Dying from dementia brings a set of experiences that are distinct from those catered for by existing models end-of-life care. Whilst the dementias are progressive and terminal, they follow a highly variable and unpredictable trajectory.⁵ Clinical uncertainty can result in professional responsibility swinging between emergency services, general practice, palliative care, psychiatry and medicine for older people (geriatrics). This is reflected by work that suggests professionals often feel unsure how best to meet the needs of people in advanced dementia^6–8 whilst families and other informal caregivers are confused as to which service to contact for support.^7,9 Whilst advance care planning may help with some of these issues, its implementation is not straightforward, with effects on cognition meaning it differs from other illness groups.^10–12

States of advanced dementia also present physical challenges that are often characterised by profound and prolonged dependency on others to meet basic needs.¹³ Progressive immobility, behavioural changes, dysphagia, incontinence and a limited ability to express one’s needs can infer significant difficulties whilst becoming established months and sometimes years prior to death. In advancing states of dementia, uncertainty and loss of control common to all deaths are compounded by a disturbance in biographical continuity and the prospect of ‘loss of self’.¹⁴ Further complications emerge given dementia’s close association with old age, frailty and multi-morbidity¹⁵ where human physiology is unpredictable and decision-making subject to the quandaries of knowing when, where and how to intervene.¹⁶

The cognitive effects of dementia also impact on the social relationships that are crucial to how care is experienced.¹⁷ This can mean complex decision-making relating to medical and social care (including transitions in the caregiving environment) can cause uncertainty and moral distress for many of those involved.^17,18 Alongside the need to have the capacity for the physical, emotional and time commitments necessary to meet practical care needs, it is also the case that families as well as close contacts on whom the tasks of caregiving most commonly fall, can become overwhelmed by the combination of demands placed upon them.^19–21

The care needs of people with dementia not only outstrip the professional resource available to meet them – they also present a level of complexity that is poorly provided for by statutory services. Furthermore, attempts to meet needs exclusively through such services also have significant economic and social consequences. This can be seen in the rising costs of dementia care for both the state and the individual.^22,23 In addition, social contact with those impacted by dementia becomes lessened contributing to an unbalanced social response to death, dying and loss which is linked to a number of health-related issues.²⁴

Emanating from this context, as well as a search for meaning and value in death, a diverse literature concerned with the intersection between ageing, dementia, personhood and citizenship, has emerged.^25–27 Significantly, within these discourses, there has been a move away from what has been termed an ‘impairment-led’ approach to dementia towards a ‘capacities-orientated’ one.^28,29

A focus on the deficits and impairments associated with dementia is closely affiliated with medical models of disease-focused care. Here the identification of a ‘disease’ process allows for a targeted approach that seeks to build resources to counter impairment or, when it is not yet fully established, prevent it from becoming so. It is through such models that success is defined, and actions are given both moral and practical value.

Articulating people’s needs through a focus on deficit and loss continues to underpin effort to improve access to and provision of disease-orientated care in dementia.³⁰ Yet a singular focus on the values associated with such care can neglect the broader experiences and relationships involved while also concealing the value held within relationships necessary for the provision of end-of-life care.^17,31,32

Often positioned in opposition to this approach, discourse related to personhood, citizenship and the relational components of the dementia experience tend to focus on the new experiences that dementia brings in its wake and how they can exert an open-ended influence on the social world.^33,34 This forms the basis of a ‘capacity-oriented approach’ by which success is understood through active participation as well as recognition of the social contribution people with dementia make.³⁴

Elements of the capacity-oriented discourse have successfully influenced how public health resources have been prioritised to meet people’s needs.³⁵ Yet at the same time, there appears to be an outer limit to the utility of such an approach. Beyond this, the emerging, inevitable shadow of death and the ‘unwanted’ imaginary of the fourth age³⁶ blurs the parameters of success, creating tension and leaving people, and entire health systems, lost in their understanding of what it means to be dying with dementia, what ‘successful’ or ‘good’ care looks like, and how value can be collectively understood in the face of profound and inevitable loss.

Regardless as to whether an ‘impairment-led’ or a ‘capacities-orientated’ approach is taken, the influence of such debate is most often seen in relation to how people might ‘live well’ well with dementia. How elements of such theory influence the meaning and expectation of a ‘good’ and ‘good care’ at the end-of-life is rarely discussed and yet crucially important in terms of how people orientate the narratives and practice of care towards the end-of-life.

This paper examines the tensions that arise when trying to accommodate a set of orientating ideals designed to help people ‘live well’ with dementia within a context where decline, dependency and loss are everyday experiences. In doing so we address a series of high-level abstract concepts that might be seen to act as organising principles of care. Navigating such a terrain can at times feel messy and unorthodox. This is especially so as we aim to traverse a path that crosses academic theory, culture, religion and spirituality to examine topics that consider the very nature of our humanity. Rather than shy away from complexity here, our aim is to unflinchingly embrace it. This, we argue, requires a language and style that reflects the subject matter whilst paying homage to the multitude of differing domains that offer relevance and experience here. We use a language and writing style that is often rich in metaphor and may feel to be bordering on the poetic at times. We accept this may jar with an orthodox academic approach but argue it is necessary given that all things, including scientific rationale and expression have an outmost point of usefulness. Beyond this, it is our experience that academic writing styles can conspire to conceal meaning, as much as it endeavours to do the opposite. We therefore invite the reader to consider that the protection afforded by a structured academic response can only offer momentary relief from the disorientating depths associated with human loss. Beyond this, within the depths of absence and its associated messiness and complexity, there might also be a presence which characterises both the value and meaning we seek.

We conceptualise the term ‘loss’ as both a general and an abstract term. In earlier portions of the paper, the term it is used as a literal translation of word, highlighting to the reader what is commonly observed and understood as memory and physical function is lost and dependencies become more pronounced. As the paper progresses, we suggest loss, or absence, has an operative function that may hold value at the level of those caring for people with dementia as well as impacting at an even broader social level. The paper therefore suggests the term ‘loss’ might be considered as pertaining to what is not empirically observable whilst also suggesting that this in itself constitutes ‘something’.

Drawing on an analysis of Western society’s changing relationship with absence, loss and death, this paper provides a critical evaluation of current end-of-life care strategies in dementia and the evolution in thinking in terms of a ‘good death’ with palliative care. In doing so we highlight how the successes brought by either a deficit-based or capacity-oriented approach has negated the need for a greater conceptual understanding of the value and function that death and decline may hold for life. We argue that the current conceptual foundations that underpin society’s approach to this have therefore arisen de facto and through responses that define value in attempts to evade the losses brought by physical and cognitive decline. This, we suggest, can conceal novel terrain within which the potential associated with an acceptance and accommodation of humanities inherent vulnerability to illness, injury, decline and death may be realised.

In reality, as a life with dementia unravels to its ultimate end, losses and gains are played out across a spectrum of experiences that range from beauty and joy through an abject suffering and despair. Such antithetical experiences can be inseparable from one another, but also create a tension that is representative of the struggles to accommodate loss at the intersection between academic theory, lived experience and clinical response in such a way that offers universally relatable value to people living through it. In current practice, it is at this intersection, that unforeseen challenges, or the realisation of a particular unavoidable event, can be presented as the result of something that has been done wrong, or something that could have been prevented. The failure or inadequacy of care, even in the presence of adequate resources, is representative of the dissonance apparent within discourse, one that is united only in defining success as something to be achieved despite the presence of all that is fractured and broken rather than through a greater hospitality to loss and the values this may impart.

This paper presents the theoretical evidence for this point before framing it within an emergent dialectic between theory and experience. In doing so we hope to shed light on the potential in turning to an approach that accommodates the presence of loss, tension and paradox in such a way that it does not preclude success.

With this as a foundational point, the paper concludes that it may not be possible to build novel approaches that respond to the scale of need without first having some vision of where value might lie. Where conventionally dementia has been viewed through the reductionist lens of being either a biological or social challenge to which there should be a matching solution, it is perhaps now more useful to look at it from the inside out, to meet people where they are and learn the lessons that dementia and its associated vulnerabilities may hold for humanity. This, we suggest, may offer a route to knowledge progression in the field.

Deficit and loss in advanced dementia

We have discussed how the imaginary of death has evolved in response to various social institutions and latterly modern medicine and palliative care. These institutions, and those around them, shape our experiences and organise our judgements with regards to death and dying in a way that they become normalised and given moral imperative.³⁷ This can be seen through the creation of the accepted standard of a ‘good death’. We have argued that such an ideal does not accommodate the darker side of dying, the inherent suffering and moral quandaries that exist at the juncture between life and death. How, for example, we understand a ‘good death’ in the context of sudden death, suicide or death in dementia where individual choice and comfort are paramount, but not necessarily achievable or practical, is rarely discussed. We have described how the medical specialty of palliative medicine has challenged thinking around death and dying, yet it has done so from a constrained position within a chain of healthcare drivers that normalise the decision to pursue measures of longevity and control. This has created both a subjective and objective inability to define our outermost limits and provide value to the work of caring for people at the end-of-life. As such we argue that, for people affected by dementia, the ideal of a good death can deny the reality of what loss means. More broadly, it might conceal death’s enduring enigma, and with this the opportunity to forge a hospitality to our own vulnerability to loss and an associated set of orientating values.

Dementia, and the multiple and profound challenges it poses, was originally understood as part of normal ageing. However, an awareness of the underlying biological processes at play led dementia to be categorised as a distinct pathology.

The identification of dementia as a disease has brought progress through enhanced diagnostics, new therapies and improved access to services and support.³⁸ However, an unequivocal focus on the disease has also brought a neglect of the underlying person. This, alongside the associated therapeutic nihilism, has contributed to an understanding of dementia as a ‘living death’.^33,39 Where dementia’s effects on social relationships are portrayed through a lens of loss and incapacity,²¹ people may experience social exclusion long before the dying phase.⁴⁰ This contributes to their systematic marginalisation in economic, cultural and social terms.^41,42 Given the chronicity of dementia, such processes can become engrained, contributing to the ‘shrinking world’ of people with dementia.⁴³

As a person’s capacity to partake in society declines due to the nature of the disease, and the restrictions and prejudices placed upon them, families and caregivers may begin to anticipate death well in advance of its event.⁴⁴ ‘Anticipatory grief’, suggests that as people adjust to the potential loss of a person, they may emotionally or physically withdraw themselves. In extreme cases, the person may be categorised as already having died, with close contacts unable to recognise any form of the person they once knew.^45,46 This in itself makes it very hard to ascribe meaning or value to the provision of care for such people, thus reinforcing social stigma, whilst leaving those in caregiving roles concealed from view.⁴⁷ The social exclusion that follows is before other marginalising factors such as race, gender and social class are considered.

Whilst deficit-based models have brought progress in some areas, they have also created a set of values whereby success is defined by reversal or resolution of the identified deficit. Dementia, and in particular death’s impenetrability to such a version of success, creates an underlying tension that underpins the current approach to care. At the same time, the successes brought by such an approach leaves little to no room for understanding the value that exists within loss itself. When people are confronted by loss, this can ultimately generate feelings of failure, further concealing the value death holds for life behind the feelings of relief, as the only way to positively embrace decline, dependency and death. It is such contexts that provide a platform for the discussion of euthanasia and assisted dying. Understanding the complexity surrounding this topic is beyond the scope of this paper, however, as we will argue, to entertain assisted dying without an attempt to fully characterise the losses associated with dementia and their role and function in relation to the provision of care has the potential to add to existing tension rather than resolve it. Recognising such complexity warrants its own dedicated discussion, we will now go on to discuss some of the more established countermeasures to deficit and loss and how they have come to shape people’s experience and understanding of death and loss in dementia.

Responding to loss

In the face of loss, clinicians and policymakers have looked to academic theory relating to ageing, personhood, citizenship and dementia to provide a set of orientating ideals.^25–27 Here complexity is considered through an array of philosophical, ethical and values-based frameworks whilst success is often defined by interventions that seek to overcome it.^48–50 These frameworks are often used within Western social, political and academic discourse in a manner disproportionately orientated towards early dementia, and a culture of living in an active, productive and ‘successful’ way.^27,51 This approach has conflicting values at the end-of-life where progressive decline and dependency dominate. How such theory is used in the transition from living well with dementia to dying well with dementia is important in understanding the meaning and expectation of a ‘good death’ and the values and practices associated with ‘good care’.⁵² It is perhaps through these processes that we might begin to orientate an approach to care that holds collective value.

Advancing the idea of a ‘good death’ and its relevance to dementia

Whether or not the concept of a ‘good death’ is a useful concept on which to orientate the general approach to end-of-life care remains the subject of rich debate.⁵² Human views on death have evolved over time, giving rise to the objective of a ‘good death’.^53–55 To understand the value of this in dementia, it is necessary to appreciate the historical context on which the concept is founded. In Illich’s ‘limits to medicine’, he traces the history of death’s relationship with culture and medicine.⁵⁶ He points to the evolution of assumptions from late antiquity and the European renaissance, where death was seen as the influence of a supernatural outside force, to early modernity where it became a ‘natural event’ within the human life course. One unintended consequence of this was to reduce the sacralised status of the human corpse to that of an object. Deprived of spiritual or legal standing, the corpse became a site of education and medical ritualisation.⁵⁷ For Illich, this, alongside a prevalence for exact measurement and a fascination with serial time, led to the idea of death being an interruption to a sequence of linear events, as opposed to the completeness of an individual’s life. It also depicted the end-of-life as an event, as opposed to a transitional process concerned with the reaching of life’s aim. Beyond the focus on time, there was also a growing individualistic ethos that necessitated a mastery and control over death.⁵⁸ Once the great social leveller, death was increasingly viewed as untimely, especially for those not of good health and in old age. The deferment of death therefore became a valued social ambition, to be achieved via growing expertise amongst physicians and increased knowledge of the physiological processes at hand.⁵⁹ Illich argues this represents a return to more primitive ideas of death as a failure of human defence against external forces. Instead of a supernatural force, he describes it as a ‘social force’, where every premature or ‘clinically unnecessary’ death is the result of a delay in medical intervention. In this way, the idea of a ‘good death’ creates a search that keeps people occupied as consumers, consumers of the tools necessary to afford control over death so that it may occur on human terms and in line with individual choice.⁵⁶

In Kaufmann’s ‘Ordinary Medicine’, she expands upon Illich’s work to evaluate the unique role of Western medicine in shaping our understanding of the dying process.³⁷ Here modern medical practice is described as existing within a chain of other healthcare drivers to create an industry that is primarily evaluated against longevity and cure.³⁷ Kaufmann argues the success of treatments, and their increasing availability, mean they become normalised to the point they are less a choice and more an ethical necessity. For Kaufmann, the ‘ordinary’ nature of medicine creates an environment where the body is understood as ‘fixable’ and life ‘extendable’ yet without defining an outer limit to these parameters. The idea of dying as part of the life course and the values this holds for humanity are therefore replaced by a state of perpetual chronic disease management. Here progress is paradoxical in that increased knowledge, surveillance and modification of human physiology is designed to reduce risk, yet increases it, through a hyperawareness of the body’s naturally deteriorating biology. This leaves physicians, families and patients rooted in a quandary of decision-making as to where the line between living and dying is drawn, whilst concealing death as having any valuable meaning. With this as a backdrop, it becomes hard to find an approach to the multiple and profound losses associated with advanced dementia, that sees value in anything else other than attempts at rectifying or avoiding them. Such a vision of success, we argue, ultimately breeds tension and further suffering through feelings of failure, inadequacy and existential meaninglessness.

The role of palliative care in shaping and sequestering a ‘good death’

Within this context, the specialty of palliative medicine has emerged. Based on Cicely Saunders’ philosophy of ‘total care of the dying’,⁶⁰ palliative medicine has promoted greater attention to psychological, social and spiritual care, bringing care of the dying into sharper focus for healthcare internationally.⁶¹ In 1987 palliative medicine was recognised as a subspecialty of medicine in the United Kingdom by the Royal College of Physicians.⁶² Within this role, palliative care has been instrumental in developing and publicising the idea of a ‘good death’ whilst working towards a culture that normalises death as a topic of public conversation.^63–65 The concept of a ‘good death’ includes; the ability to ‘retain control of what happens, to have control over pain relief, to have choice and control over where death occurs, to be able to issue advance directives which ensure wishes are respected’.^53,54,66 Whilst such a discourse has afforded a platform for the discussion of dying, it has done so under strict parameters set by the broader healthcare industry within which it lies. Here, the ‘truth making’ chain of industry, research and evidence normalise an approach where the co-morbidities and symptoms associated with dying can be fixed, prevented or alleviated.⁶⁷ Where this does not happen, its risks being interpreted as a failure of care and, more specifically, a failure of palliative care.⁵⁵

The emphasis on a ‘good death’ is therefore reminiscent of Illich’s ‘unending search’ that keeps people occupied as ‘consumers forever’⁵⁶ whilst arresting the development and pursuit of a set of values that reside within the presence of loss. The extension of palliative care services into old age, frailty, chronic illness and dementia can be seen in this light.⁶⁸ Framed within a need for increased access and equity of care,⁶⁹ the ideal of a good death with palliative care is now systematically implemented across health and social care policy.⁷⁰ The procedural components of a good death have become ritualised by professional structures that rely heavily on autonomy and individual choice, reinforcing the idea of death as disruption to a linear sequence of events. The ‘good death’ therefore is a death that is allowed only where clinically necessary, namely when the person is old and in good health, or when all available medical treatments have been exhausted. This is in opposition to death being something beyond control, something that is woven into the nature of our human bodies and their inherent vulnerability to decline, illness and injury.

Analysing where palliative medicine fits within Kaufmann’s quandary of ‘ordinary medicine’ offers a different perspective that is representative of the specialty’s long-term struggle for identity.^71,72 Kaufmann argues that the evolution of medical technologies and the introduction of ‘strangers at the bedside’ such as lawyers, bioethicists and regulatory bodies has resulted in medicine’s changing means and ends. Available technological innovations have defined medicine as a stream of progress-orientated breakthroughs that objectify longevity over social good.⁷³ The success of such innovations in adding wanted years to life, is evidenced through clinical trials which create a technological imperative to intervene.¹⁶ However, palliative medicine sits somewhat outside this framework. In the United Kingdom, palliative care is funded mainly by charities and has a relatively small evidence base, especially where randomised control trials are concerned.⁷⁴ This means decisions are often made according to a values-based framework, allowing interventions to be contextualised within the relevant phase of life whilst allowing the value death holds for human life to be considered and understood.

Palliative medicine, therefore, sits within the increasingly narrow borderlands between life and death where moral quandary and uncertainty reside. Often dominant in their presence at the end-of-life, these forces are nonetheless hidden, unceremoniously ushered towards the periphery of conscious thought by a system designed to remove them from contention. Whilst there is an understanding from within the specialty that the tools of ‘ordinary medicine’ are unhelpful here,⁷² there is a constant pressure from the chain of healthcare drivers to conform to a technical and system-based language of care; to treat symptoms that will inevitably take hold, to standardise and reduce multifaceted complex problems, such as death, into what might be understood as success or failure, good or bad. People often arrive at these borderlands well-versed in the language of ordinary medicine and therefore poorly equipped to navigate the paradoxical circumstance of not wanting to die yet but also not wanting to be kept alive in a state of prolonged decline and dependency.

Death’s enduring enigma

Philosophers and theologians across the world have long recognised the importance and necessity of humanity’s impermanence and with this, the role and function of absence and loss.^75–77 Yet the darker side of human finitude, the uncertainty of the unknown without the potential for knowing, the prospect of suffering, decline, dependency, indignity and loss, coupled with the reality that all of us, at any time, are old enough to die, will always leave people beset by fear and grief. At the centre of humanity’s prolonged discomfort with suffering and death is the eternal human search for meaning. That in a single, unpredictable heartbeat, we lose all that has been so intricately grown seems completely out of rhythm. The discord compels people to seek answers, whilst the reality of their answerability only makes such questions more compelling. The human eye seeks to rest on some final focal point as a tonic to the meaningless emptiness over which life seems to be stretched. Yet to search for such a point within the infinite and inescapable void of death is inherently disorientating because of its absoluteness and its incomprehensibility. Instead, the temptation is to examine such a void through the lens of how best to avoid it. This represents an enduring tension in how we conceptualise the losses associated with death and how we orientate a response that affords primacy to the vulnerability and fragility of human life. To trust in the suffering and unknown presented by death within a world that strives to vanquish such entities is an almost absurd remit, yet this is often all that remains at the reaching of life’s aim.

The evolution and role of the good death

We have discussed how the imaginary of death has evolved in response to various social institutions and latterly modern medicine and palliative care. These institutions, and those around them, shape our experiences and organise our judgements with regards to death and dying in a way that they become normalised and given moral imperative.³⁷ This can be seen through the creation of the accepted standard of a ‘good death’. We have argued that such an ideal does not accommodate the darker side of dying, the inherent suffering and moral quandaries that exist at the juncture between life and death. How, for example, we understand a ‘good death’ in the context of sudden death, suicide or death in dementia where individual choice and comfort is paramount, but not necessarily achievable or practical, is rarely discussed. We have described how the medical specialty of palliative medicine has challenged thinking around death and dying, yet it has done so from a constrained position within a chain of healthcare drivers that normalise the decision to pursue measures of longevity and control. This has created both a subjective and objective inability to define our outermost limits and provide value to the work of caring for people at the end-of-life. As such we argue that, for people affected by dementia, the ideal of a good death can deny the reality of what loss means. More broadly, it might conceal death’s enduring enigma, and with this the opportunity to forge a hospitality to our own vulnerability to loss and an associated set of orientating values.

Capacity-oriented approaches in dementia

Where the social context offers a limited conceptual understanding of the role and function of loss it becomes hard to define an approach, with a corresponding set of values, that embraces the experiences common to dementia. To date, the challenge has been met by an evolving discourse that seeks to reframe a deficit-based or ‘impairment-led’ approach to a ‘capacity-oriented’ approach.^28,29 Much of the literature here, especially arguments for a citizenship-based approach, draw on literature grounded within the disability rights movement and calls for dementia to be considered as a cognitive disability.^78,79 Here the literature points to how people affected by dementia can, and do, actively engage with people and the places where they live. In doing so, it has been argued they have a significant influence on the open-ended and unfolding nature of their futures.⁸⁰ Supporting evidence shows that even in very advanced states of dementia people initiate as well as respond to verbal and embodied engagement.^81,82 Beyond this, authors have drawn on a wider social ecology that recognises the important contribution that people with dementia make.⁸³

We will now map the major theoretical underpinnings of this approach. Ultimately, the aim here is to illustrate the series of tensions that can arise when considered from the perspective of advancing dependency and closer proximity to death. Here, whilst calls to progress towards a ‘capacity-oriented approach’^28,29 have done much to re-affirm the notion that people can, and do live well with dementia,^26,84 they also sidestep issues relating to decline, dependency and loss highlighted by Higgs and Gilleard’s description of the fourth age as ageing without agency.^27,36

Personhood, citizenship and the moral standing of people dying from advanced dementia

Adapted from the works of Tom Kitwood,²⁵ ideas on personhood are now frequently used within the academic and clinical literature relating to dementia as the basis for ‘person-centred care’ in institutional settings.⁸⁵ In a series of works, Kitwood described what he saw as a fundamental denial of personhood for people with dementia.^25,86,87 He argued that individualism had reduced the notion of personhood to two criteria, autonomy and rationality.⁸⁸ The reduction of personhood to ‘cognitive competence’ has had profound implications for the moral recognition of people with dementia. Kitwood’s intervention was to conceptualise personhood as relational, thus shifting the focus from the disease process towards the interpersonal environment.⁸⁹ It has since been adopted as a core component of ‘good care’ and a vehicle for achieving a ‘good death’.⁹⁰

Models of personhood such as this have helped focus attention on the value people with dementia hold and how this might relate to the communities to which they belong. For Kitwood, what is of value when considering personhood is not defined by a person’s own set of capacities or characteristics, instead personhood is relational. This means personhood is a gift that is bestowed upon one another and arises as a product of being incorporated into a community that values and cares for people with dementia.⁹¹ The difficulty here is that personhood becomes dependent on others seeing value in people throughout dementia’s progressive but diminishing effects. Where this value is unseen or ignored then people will inevitably be deprived of their status as a person and the struggle to preserve it becomes one lost to inevitable failure. This issue becomes even more problematic when there is no inherent mechanism within the model that commits or obliges people to offer the ‘gift of value’ that might define personhood. In a culture that does not naturally gravitate towards the vulnerable, this raises questions as to whether or not we trust that communities do indeed value people with dementia in such a way that defines a relational approach to personhood.

Kitwood’s ideas on personhood, and other person-centred initiatives, have also been critically examined from their wider philosophical context.²⁷ Kitwood, it is argued, amongst others, has ‘sidestepped’ the metaphysical components of personhood, namely agency, identity, reflexivity and will, confounding these with components of personhood from moral philosophy.²⁷ In doing so, there is little room to manoeuvre around the reality that, whilst their moral standing as persons should be upheld, an advanced state of dementia is unavoidably characterised by profound dependency. This would suggest that many people with dementia do indeed lose the components and capabilities of personhood. This is important, as when the expectation of good care demands that personhood is upheld through the dying phase, the responsibility for this is unavoidably placed on other people.²⁷ Where agency, identity, reflexivity and will are now the responsibility of another person, this can lead to a narrative of stabilisation intrinsically linked to prevention, prevention of what is an inevitable deterioration of one’s identity to the point of death. Rather than providing mediation and support for this decline, the struggle to maintain personhood can lead to distress of a moral nature, whilst decision-making becomes rooted within the Kaufmann’s quandary of ‘where to draw the line’.³⁷ Debating the role of personhood has led some to question whether or not it is anything more than a ‘placeholder’ for claiming rights.⁹² Here, Higgs and Gilleard argue that an individual’s personhood can only be preserved through the dependency, cognitive decline and disrupted identity associated with advanced dementia when it is understood as a proxy or placeholder for moral status.⁹²

Academics and activists have suggested that the limitations of Kitwood’s personhood can, in part, be overcome by thinking about models of citizenship.^91,93 Drawing on arguments from the disability right movement, Bartlett and O’Connor have advanced a model of social citizenship that broadens the locus of responsibility by placing greater emphasis on organisational practices, social location, culture, ethnicity and gender in understanding not just the dementia experience but the plurality of dementia experiences.²⁶ Crucially, where Kitwood’s approach to personhood is presented more as a moral choice, a citizenship-based approach defines the person with dementia as an active agent who interacts with society to bring about individual and shared societal goals.⁹³ That people with dementia stand as active citizens mean their rights would be backed up by laws and obligatory duties that demand shared and mutual responsibility for one another. Whilst such an approach addresses some of the limitations of Kitwood’s theory, it remains problematic for many people with dementia given its focus on performativity. For example, whilst it may counter injustice and oppression via legislation it cannot force people to love and value one another meaning the interactions with people with dementia will remain difficult for some, especially in a cultural context that is heavily influenced by the metaphysical components of what might define personhood.⁹¹ That dementia is a degenerative condition and follows a trajectory that moves away from autonomy, agency and self-representation that citizenship-based models value creates inherent tensions when thinking about the end-of-life and care for people in advanced states of dependency. This tension permeates throughout the discourse describing dementia as a disability.

Measures that counter the narrative of deficit and loss in dementia have given a platform to the fact that people can and do live well with dementia,⁸⁴ yet they do not offer a framework for understanding value or meaning in the suffering associated with dependency, deficit and loss that is many people’s reality. The risk is they therefore contribute to the wider philosophy of death as absence, devoid of meaning or value. Whilst a moral duty to care remains, the absence of an appropriate philosophical framework to support this work means that communities affected by dementia are labelled as ‘hard to reach’.^94,95 Services founded from this perspective have not addressed the reality that deficit, loss and suffering are indeed a fundamental component of dying, especially in dementia. Here, it is not the community that is ‘hard to reach’, but rather the service that is inappropriately designed and therefore inaccessible and of limited use in the first instance.

Much like the ‘good death’, whether or not person-centred initiatives are useful concepts around which to focus improvements in end-of-life care is therefore an area of debate.⁹⁶ What is clearer, however, is that the narrative around it persists as a powerful presence in society, as well as clinical care and legal systems. As Higgs and Gilleard conclude, its purpose may be in questioning ‘not personhood, but that which it serves – namely, the idea of possessing moral identity’.⁹⁷

Dying from advanced dementia, the added context of old age, frailty and multi-morbidity

Death in dementia is most common in old age, a fact that brings its own unique challenges and theoretical approaches. The development of a ‘hyper-cognitive society’,⁹⁸ along with its structural individualism, has made the body a key site to display identity and societal value, with some arguing the ‘corporeal capital’ gained through owning a healthy body as a critical resource used to engage with the notion of successful ageing.^99,100 Within such a discourse, ‘normal ageing’, where infirmities, indignities and dependence prevail, is understood as failure.¹⁰⁰ At the same time, the absence of any meaningful understanding of the shortening of time can mean the dying phase is missed, or worse, devalued to the point of ambivalence. Such an eventuality is synonymous with the notion that dying in old age is both ‘natural’ and ‘appropriate’ with the assumption that it effortlessly happens at some point meaning those occupying caregiving roles are concealed through a lack of legitimacy.⁴⁷

The primacy afforded to independence and autonomy results in the challenges of physical deterioration in old age being met by technological and social interventions that seek to prevent, fix or stabilise as a means of bringing progress. This is evident in the response to the ‘syndrome’ of physical frailty, which is cast as a co-morbidity to the ageing process necessitating a clinical response to stave off an eventuality that is incompatible with ‘a good death’.^101,102 Such interventions breed complexity and uncertainty meaning the medical care of very old people becomes increasingly challenging.^103–105

In a similar vein, the social isolation of older people is often described as an ‘epidemic of loneliness’.¹⁰¹ Where social isolation is seen as a threat to human capacity to partake in society in a productive way, interventions follow that ‘responsibilise’ people and institutions for the maintenance of a naturally depreciating resource.¹⁰⁶ This can reinforce the notion of ‘old age as failure’^107,108 whilst further contributing to the negativity around issues of decline and loss. An alternate approach appreciates the contraction of time around failing bodies as means to building a deeper connection with the immediate environment. This connection is constantly reinvented as people rebuild their worlds, fostering new relationships and engaging in opportunistic sociability that maintains a social ecology relevant to the roles and identities of very old age and dementia.³¹

The evolution and role of a capacity-oriented approach to dementia

The evolution in approach to dementia care from deficit-based models to capacity-oriented models has created a corresponding shadow of failure that becomes ever more apparent with increasing proximity to the fourth age and the end-of-life. Here, the reality of advanced dementia might come to represent failure, a product of the unsuccessfully aged and cared for¹⁰⁹ to which, even in the presence of adequate resource, there is no unifying version of success. This can create both moral and existential distress for family and carers who are left to navigate the vast empty planes of loss without an orientating framework.

We argue that, whilst deficit-based models are frequently viewed in opposition to a capacity-oriented approach, ultimately, both approaches focus on the maintenance and preservation of structuring processes that guard against loss. Neither theoretical approach prioritises the accommodation of loss, absence and the transformational potential it might hold for human life.

Such tensions lie at the centre of how we might transition from living well to dying well with dementia. Where they are not addressed, there is potential for an evolving community of people who are subject to the stigma of ‘failed care’. This is a form of care to which no current version of success is applicable, care that is not troubled by issues of resource and access, but of knowing what constitutes good care in the first instance. Where unforeseen, yet inevitable outcomes such as pressure sores, incontinence and the withdrawal from food and fluid are seen as failure of care rather than orientating points on which to build a greater hospitality in such a way that might define value.

Conclusion: The orientating narratives to dependency, death and dementia

Juxtaposing the theoretical and philosophical underpinnings of the existing approach to end-of-life care in dementia, alongside the reality of the problems faced in providing it, highlights the absence of any meaning or value in how losses associated with the dying process are understood.

When considered from the perspective of the end-of-life, positioning dementia-related theory as either impairment-focused or capacity-oriented is therefore representative of a false dichotomy. A tendency to either of these seemingly polar approaches can at once deny a life left to live, or the reality of people’s suffering brought by decline, dependency and loss. Whilst there might be an acceptance of an ever-shifting balance between these two polarities, they are nonetheless conceptualised as oppositional paradigms; ones which drive the relentless pursuit towards one and away from the other.

Where success can only be defined through the avoidance of loss, the quest for meaning and value within the absence and loss associated with advanced dementia remains enigmatic. Similarly, such a pursuit inevitably leads us back to the polarity from which we were trying to escape in the first place. This can be seen in more recent calls that caution against the persuit for citizenship and personhood, where it might also work to deny the reality of people’s suffering.¹¹⁰

We have acknowledged the challenges posed by dementia, and the ongoing successes that have come as a result of advocating for greater care in response to unmet need. However, we have also argued that such practice has also created a matrix of orientating ideals and values that conspire to conceal the lessons to be learnt from a closer openness towards the idea of loss. This ultimately makes the transition from living well to dying well with dementia a process fraught with both tension and paradox, wherein further interventions are only likely to contribute to this unwanted situation.

We suggested early on in this paper that reframing the challenges of dementia so as to represent a lesson from which we may learn more about the value loss holds for humanity as well as the ways in which such care may offer valuable insights and a route to knowledge progression in this field.

We have built on this argument by examining the development of Western society’s approach to death. Here, we have argued that death is most often viewed through the lens of how best to avoid it – leaving little room to move beyond notions of control in defining a good death. We suggest this is problematic in all deaths, but especially so in dementia where progressive decline and dependency can exist for years. Where orientating principles of care work to conceal any potential value in loss and absence it becomes hard, if not impossible to create a set of collective values that embrace the experiences common to dementia.

Our analysis suggests there is a fundamental absence of attention to humanity’s inherent vulnerability to loss beyond the articulation of being challenged to resolve it. In this absence, our principles and orientating ideals have arisen de facto rather than through any conscious attempt to understand the value and meaning present in loss itself. Comforted by a series of successes brought about by notions of stabilisation and prevention that take their reference points from the ‘truth making’ industry of modern medicine and the corresponding values of autonomy and independence,⁶⁷ we have been prevented from following a line of enquiry that seeks to understand the potential value that loss may hold for life.

In dementia, a focus on modifiable risk factors, active social participation and the preservation of personhood is united through the imperative to control. Within the possibility of control comes a responsibility for delivering it. Where control is illusionary, the responsibility will inevitably result in failure and its associated distress. The absence of control may instigate deep fear. Yet within it, or indeed in the effects that surround it, we might find reference points better suited to the roles and identity of the dependent dying. Such an approach is echoed by Gilleard and Higgs’ in their description of the social imaginary of the ‘fourth age’.³⁶ Here the focus is on the darker side of old age through the grouping of the experiences of abjection, shame and limited agency into an ‘imaginary’ metaphorically likened to a cosmological ‘black hole’. They argue such a black hole may be ‘understood by examining not the experience itself, but its impact on the discourse that surround and orientate themselves to it’.³⁶ It is here, in the ‘event horizon’ that we might also begin to understand more about the nature of care where people dying of dementia are involved. As with the event horizon, it is not necessarily its existence that needs explanation but more its ‘nature, meanings and the relationships through which it is realised’.¹¹¹ Through such means, we may therefore begin to understand the role of moral imperative of care as a means of realising dependency and decline in the lives of everyone.

Our critical analysis of personhood, citizenship and the ‘good death’ with palliative care as orientating principles to the provision of care at the end-of-life provides further insights into how progressive ideals can be paradoxical in the face of advanced dementia. Here, the ideal of ‘good care’ at the end-of-life has been generated in such a way that bypasses any appreciation of the potential value death, loss and its associated paradoxes may hold. Ultimately, the ideal of ‘good care’ to which we aspire, and the value attached to preventing decline, dependency and loss exists in constant tension to an approach that is orientated to the accommodation and acceptance of all that is imperfect. Our inquiry into this subject suggests that the current theoretical approaches to dementia care need to be thought of as being dialectical in relation to the lived experiences of decline, dependency and loss and not just outcomes based on abstract criteria.

We argue that entertaining the significance of such a dialectic can offer insights that are of wider value than simply presenting a new model. Dementia offers us a unique window into a realm where there is progressive transition towards the end of both a personal and a social world; a world that has been intricately developed yet will also unravel to reveal its own unique geography. It is within the solitude of this unravelling that paradoxical moments of value may emerge. And it is here, through relationships shaped through acts of caregiving and receiving that we might build acceptance towards all that is imperfect. The implications of which are potentially far-reaching.

The continuation and development of such work open up new terrain that will have relevance to clinicians, academics, advocates, evaluators and policymakers in their pursuit of new knowledge and the progress with which this is associated. Such insights are crucial in understanding how we orientate the day-to-day practices of care at the juncture between living and dying. At a systems level, such theoretical insights provide a platform on which to orientate complex and profound change that is necessary to re-imagine a future where quality, access and equity of care is improved.²⁴ This is of relevance to the study of death systems and the field of public health palliative care, offering guidance on how existing concepts might be developed in such a way that accommodates the dialectic between theory and experience presented by dementia.

In summary, this paper advocates for a re-orientation of thinking about the challenges posed by dementia at the end-of-life, a re-orientation that re-evaluates the value of loss might have when people are faced by death, dying and loss more broadly. Challenging approaches that we believe generate tension, paradox and potential suffering in this field, we argue that it would be better to begin by re-assessing what is of value at these junctures and for whom is it successful rather than simply instrumentalising it through professional discourse. Such an acknowledgement might offer a solution out of the paradoxes that currently define this arena.

Footnotes

Acknowledgements

The authors would like to thank Elizabeth Sampson, Elaine Eliopoulos, Moise Roche, Merve Cetinkaya, Christine Carter, Joseph Low, Taghrid Al Qunaibet and Henry Lewellyn for their contribution to discussions around the topics raised by this article.

ORCID iD

Joseph M. Sawyer

Ethical considerations

Ethics approval was not deemed necessary for this article.

Author contributions

Joseph M. Sawyer: Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Writing – original draft; Writing – review & editing.

Paul Higgs: Supervision; Validation; Writing – review & editing.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was supported by Alzheimer’s Society, grant number 513 [AS-CTF-19a-002]. Open access fees were supported by Marie Curie.

Declaration of conflicting interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The lead author knows one of the editors (Dr Sallnow) and has previously worked with them.

Data availability statement

Not applicable.

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