Confronting the Existential Threat of Dementia: An Exploration Into Emotion Regulation
Author: Cheston, Richard; Christopher, Gary
Date: 2019-06-12T07:00:00+00:00
Keywords: Psychology; Applied Psychology; Emotions; personality; Psychotherapy; General; Medical; Psychedelic Library
Description: This book explores how dementia acts as an existential threat, both to people diagnosed with the condition, and to their carers. The authors highlight how dementia not only gradually erodes our most fundamental abilities, but that it does so at a time of life when the resources of individuals, couples, and families are already stretched. While over time many people who are living with dementia are able to adapt to their diagnosis and acknowledge its impact on them, for many others it remains too threatening and painful to do this. The book draws on examples from clinical practice and experimen
Publisher: Springer

Richard Cheston and Gary Christopher

Confronting the Existential Threat of DementiaAn Exploration into Emotion Regulation

Richard Cheston

Department of Health and Social Sciences, University of the West of England, Bristol, UK

Gary Christopher

Department of Health and Social Sciences, University of the West of England, Bristol, UK

ISBN 978-3-030-12349-9e-ISBN 978-3-030-12350-5
https://doi.org/10.1007/978-3-030-12350-5

Library of Congress Control Number: 2019935505

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG, part of Springer Nature 2019

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To our grandparents: Leslie, Iris, and Leslie

Acknowledgements

We would like to recognise the debt we owe to so many people. Most importantly, we would like to acknowledge the many people who are living with dementia and their relatives and supporters whom we have met over the years and who have taught us so much. This is both the people we have known in our work as psychologists, but also members of our own family and friends. Without their willingness to share their experiences, we could not have even started to write this book. We hope they feel we have been able to communicate some of that learning here.

We would also like to thanks the many colleagues, friends, students, and trainees that we have worked with over the past years and whose support in developing our research and ideas over the years has been so important. We would especially like to thank Emily Dodd, Sanda Ismail, and Subitha Baghirathan at the University of the West of England, as well as Constantine Sedikides and Tim Wildschut at the University of Southampton. In addition, we would also like to thank: Jeremy Allen, Elizabeth Bartlett, Nick Bennians, Gillian Bebber, Stephany Bowen, Romola Bucks, David Childs, Peter Clegg, Peter Coleman, Lorraine Conduit, Liz Coulthard, Suzanne Davis, Olena Doran, Elizabeth Drew, Jane Fossey, Beatrice Godwin, Julia Gifford, Rebecca Guhan, Peter Hampson, India Hart, Julia Hecquet, Clive Holmes, Julian Hughes, Zoe Hughes, Lynne Hopkinson, Ada Ivanecka, Aaron Jarvis, Charlie Jones, Roy Jones, Jo Keightley, Anna Lagerdahl, Anna Littlechild, Jill Mann, Helen Mander, Ann Marshall, Robin Means, Chris Pawson, Gill Podger, Elsa Schmidt, Debbie Smith, John Spreadbury, David Stokes, Deirdre Sutton-Smith, Dani Tingley, Paul Whitby, Philippa Wilson, Liz Young, and Nancy Zook. Additionally, Rik’s clinical work has been supported and developed by working with so many excellent clinicians within the community Mental Health Teams in Avon and Wiltshire Mental Health Partnership trust, at the RICE memory clinic in Bath, as well as with many Clinical Psychology Trainees and Assistants.

We would also like to recognise the organisations that have funded different aspects of this research that we report here: the Mental Health Foundation; the National Institute for Health Research (NIHR); the Alzheimer’s Society; Alzheimer’s Research UK, and the University of the West of England. The views expressed here are ours, and ours alone, and do not reflect the opinions of any of these agencies.

Finally, we are both indebted to the support, patience, and tolerance of our families over the past years: Andrea, Katharine, Huw, and Marie.

Contents

1 Introduction: Living in the Shadow of Dementia
1

2 Dementia in Context
7

3 Dementia as an Existential Threat
27

4 Dementia and Relationships
45

5 Identity and Self-Esteem
61

6 Being the Same but Different: Creating Meaning from Dementia
73

7 Defending Against the Threat of Dementia
93

8 Increasing Recall Without Increasing Distress
113

9 An Existential Approach to Dementia
129

Index
139

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_1

1. Introduction: Living in the Shadow of Dementia

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

Human beings have a unique facility: we know we are mortal, and yet, for the most part, we lead our lives without becoming overwhelmed by this knowledge. This capacity to know but also not know about the inevitability of our deaths does not just protect us against the knowledge of its certainty, it also helps us to defend against other existential threats. Dementia represents just such a threat. This book is about how the process of defending ourselves against the threat of dementia enables us to regulate our feelings about it.

Keywords

DementiaTerror Management TheoryExistential threat

We all live in the shadow of dementia. For increasing numbers of people, dementia is ever present in their lives, cumulatively eroding their most basic skills and abilities. For others, their experience of dementia lies behind them, and periodically looms out of their past like a returning ghost. For many more people, the possibility of dementia weighs heavy, suspended like a shroud over their future selves. And yet, for the most part, we all of us manage to find a way of living in the shadow of dementia without being overwhelmed.

This book is about the way in which this shadow affects our lives. It is a book about how, as human beings, we can maintain an emotional equilibrium in the face of this existential threat, the threat of dementia, and how our understanding of dementia is ultimately shaped by how we defend ourselves against this knowledge.

Most of all, this book is about the way in which dementia is personal. Indeed, how can it be anything other? Every life that is lived in the shadow of dementia is a life that is transfigured by it. Yet, if we face dementia squarely, then this enables us to strike a balance between being aware of our human frailty without becoming overwhelmed by it. Achieving this balance in our lives can help us to stop taking life for granted and enable us to appreciate the people around us. In essence, the possibility of dementia encourages us to make the most of our opportunities and to treasure the things we love.

An Existential Approach to Dementia

It is now something of a cliché to note that our lives are framed by a central existential truth that as human beings we are both mortal and also that we know that we are mortal. We know that we live and then we die. We know, then, that all our achievements, all of our accomplishments and our relationships are, in the broader scheme of things bound to crumble away. At the same time, generally speaking, most of us don’t think about this until of course we stumble across a reminder. Knowledge of our own mortality rarely dominates our lives—we generally do not go through our day-to-day lives with knowledge of our own mortality at the front of our minds.

For many psychologists, this duality—of being both aware and also not aware of our own mortality—is not an accidental feature of our lives. Instead, the need to manage the conflict between the drive for self-preservation and the realisation that death is inevitable, is a fundamental feature of how human culture has evolved. The theoretical basis for this is known as Terror Management Theory, according to which the most fundamental features of our social world, our religions, our cultural world views, our national and social identities have all been made necessary by a need to disguise the reality that death is not only inevitable, but also, to some extent, unpredictable. The terror that would otherwise arise from recognising this, and thus acknowledging our fundamental lack of control over our lives, leads us to invest ourselves in the world around us, to create relationships which sustain us, and values and systems that will outlive us. By so doing, Terror Management Theory suggests, we create a sense of an enlarged immortality—that we are part of a wider whole that can outlive us. As we will argue in chapter three, this wider, cultural worldview provides us with the crucial psychological ingredients that protect us from the anxiety and distress that would otherwise come from being reminded of our mortality. These psychological resources are: self-esteem, social connectedness or a sense of loving and being loved in turn by others, self-continuity or a belief that we continue to be the same person now that we have always been and a sense that life has a meaning and a purpose.

So what does this have to do with dementia? In psychological terms, the dilemma facing someone with dementia is a more acute version of the dilemma which faces us all: that is to say how to maintain the psychological resources that emotionally buffer us against the anxiety that would come from knowing that one potential future is of progressive deterioration leading to death. However, someone living with dementia faces this challenge from a context of diminishing cognitive ability. This means that it becomes much harder for the person to hold onto these psychological resources—and thus for them to maintain an emotional equilibrium.

In order, then, to understand how people respond to their dementia we need to think about how people protect themselves from the consequences of knowing about dementia. In this book we will be looking at a broad swathe of psychological research, drawing on psychotherapy and clinical experience as well as social psychology research studies with the general population and the growing body of psychological research with people who are living with dementia. All of this work, we will argue, makes a strong case for the importance of an existential approach to dementia care.

An explicit existential narrative has hitherto been largely absent in the dementia care literature. Although there is a growing body of research around how best to meet the palliative care needs of people living and dying with dementia [1], the inevitability of gradual deterioration and impending mortality are something of an elephant in the room in dementia care. We all know that dementia involves this deterioration, but we struggle to find the words to talk about it. However, if we look harder, then it is clear that while these are rarely explicitly pointed to, in fact existential themes abound throughout the psychosocial literature.

Our purpose here is to set out how people with dementia struggle with these brutal, existential truths. This endeavour takes many forms. For instance, a decline in our abilities makes it even more important to cling onto our self-esteem. We know, too, that people strive to make sense of dementia even though by doing so they face being overwhelmed by the very condition they are trying to come to terms with. However, the struggle for self-esteem and meaning in life are not specific to people with dementia. This struggle is an innate part of the human experience. For people who are living with dementia, however, it is one that takes place within the context of declining mental functioning and against a backdrop of often hurtful and pejorative social judgements. Thus, as we will explore in this book, one effect of becoming aware of an existential threat is that people turn to those who are closest to them for comfort. However, for a person with dementia, their cognitive impairment progressively disrupts the foundations upon which this social connectedness is built, often creating a profound sense of insecurity. This insecurity may be acted out through attempts to get back home, to seek out parents long since departed, or to behave as if nothing has changed, shielded by the belief that the world is as it has always been.

Similarly, a well-documented effect of becoming aware of one’s own mortality is that people fall back on those parts of their life that provide them with a sense of being valued—that is to say, they turn to those elements of their identity that enhance their self-esteem. This may be their profession or career or a social role such as being a being a parent. The person may insist that they are still a farmer, waking early and looking to milk the cows. They continue to behave in this way, because it is what they have always done. It is what they are. Now, more than ever before, perhaps, they still need to be a farmer, because that gives their life meaning and purpose.

Yet, when the person living with dementia is no longer living on a farm but is instead now a resident in a Nursing Home, then this behaviour is liable to be misunderstood and to be seen as a symptom of an underlying disease rather than as a reaction to that disease. This way of coping with an existential threat is at risk of being seen as a symptom of an underlying pathology. Additionally, all too often staff in that Nursing Home are likely to assume that the person no longer has any awareness of what they are doing or of what is happening to them. After all, to the casual observer, what they are doing may make little or no sense. Consequently, despite the many improvements in dementia care over the last twenty years, the responses of others to the person with dementia is often predicated on a belief that they just do not understand.

Importantly we will argue that these behaviours are a response to knowing that something is wrong at a much deeper level. Instead, it is a way by which the person with dementia engages in an internal struggle to make sense of the “wrongness” that is all too evident, while at the same time trying to keep in sight the hope of rescue.

When people who are living with dementia appear to behave as if they lack all insight into their condition, it is rarely due to a lack of awareness, but rather because they wrestle with that awareness at an implicit, unconscious level. They, too, are living in the shadow of their illness, with their behaviour guided by what they fear as much as by what they acknowledge.

In this struggle to live alongside their dementia, it is the relationship that a person has both with those around them and with their own dementia that determines the path of their journey. Where a person is afraid of their dementia, too scared to mention its name, too fearful to allow it to be exposed, then such avoidance shapes their lives and those of the people around them. By contrast, if the person lives alongside their dementia, acknowledging its existence, even if they resent or fight the incursions it has made into their lives, then this person is more likely to find acceptance of their condition, and maybe even to achieve a sense of peace. They are not living in denial of their diagnosis. Instead, they are more accepting of their illness. At this point, they may even be able to make those choices that enable them to live well with dementia.

Most people who live with their dementia find a way to accommodate these changes, to allow themselves to be looked after, and to gradually let go of even the most precious aspects of their lives. These people seem to find a way to live quietly alongside their loss of memory, their word finding difficulties, and the piecemeal dissipation of even the most basic skills.

For those of us who, at least for the present, are not living with dementia, then working with or living alongside people who have dementia conjures forth an existential threat. We, too, face the possibility that this illness will contaminate our lives at some point, and thus our psychological equanimity is justifiably threatened. We too live in the shadow of dementia. Just as the person with dementia may react by finding a way to “not know” about dementia, so society too often finds a way to block out the awfulness of dementia by “not knowing” about aspects of the illness, and most importantly by inaccurately creating the myth that dementia is a state of perpetual unknowing.

Reference

1. 1.

Hughes, J., & Van Der Steen, J. (2017). End of life and palliative care in dementia. In D. Ames, J. T. O’Brien, & A. Burns (Eds.), Dementia (5th ed., pp. 344–348). London: Arnold Health Sciences.

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_2

2. Dementia in Context

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

The term “dementia” refers to a group of symptoms that are caused by different neurodegenerative diseases, the most common of which are Alzheimer’s disease and vascular dementia. The disease process is progressive, gradually affecting almost all areas of brain functioning. Although treatments exist for dementia, the condition is not curable. With the population profile of many countries becoming increasingly dominated by older people, the number of people who are living with dementia is steadily increasing while the costs of funding care are also rising. The impact of dementia is widespread. It affects not just the person living with the condition, but also those members of their family and neighbours who provide care. It is a highly stigmatised illness, and a range of social factors, including class and ethnicity, play important roles in determining how dementia is experienced, as well as the type of support that people living with their condition can draw upon. The final section of this chapter concerns service provision across the whole life course of the condition, stressing the importance of post-diagnostic support in terms of helping people live well with dementia.

Keywords

DementiaDiagnosisPrevalenceEthnicityServices

In 2010, the Alzheimer’s Society in the UK commissioned a poll to find out what people across the country thought and felt about dementia. The results were startling. They showed that nearly two-thirds of respondents (63%) admitted that they were frightened about the prospect of growing old and having dementia. While older people were the most frightened of dementia, fears about the condition were spread across the age range. Indeed, more people were frightened of developing dementia in old age than they were of actually dying [1]. Moreover, these fears of dementia are not just general and non-specific. The phenomena of “dementia worry ” or anxiety about personally developing the condition, for instance, is becoming increasingly widespread especially in mid-and late-life [2].

It is less clear what it is specifically about dementia that makes people so frightened. Why is it that this condition evokes such widespread and occasionally debilitating fears ? Are there aspects of dementia that are more threatening than others? In this chapter, we will attempt to answer these questions. We will provide a brief overview of dementia focusing on the impact that the condition has both on the person who is living with the condition and their family who so often provide the day-to-day care for them. We will then broaden our perspective and look at the impact of dementia on society, with a particular emphasis on class and race. We will end this chapter by reviewing that state of play of dementia services here in the UK.

What is Dementia?

Dementia is a syndrome whose chief characteristic is severe cognitive impairment across a range of domains, encompassing memory, language, reasoning, and visuospatial processing among other things [3]. These symptoms are largely due to disease processes, many of which are progressive, the most common of which is Alzheimer’s disease. Each of these various illnesses shares three common features: while they may start with relatively discrete problems in one or two areas of cognitive functioning, they eventually affect almost all of the person’s abilities. Although the rate of decline varies considerably, these conditions are largely progressive in nature[1] and, at the time of writing, although treatments exist, none of the different forms of dementia can be cured. While the term “Alzheimer’s disease” is often used synonymously with dementia, it is important to make the distinction that dementia is not a disease, rather dementia refers to the symptoms of the disease process. Dementia may also be caused by other conditions, such as cerebrovascular disease, as is the case in vascular dementia. This can often appear in a combined, or mixed, presentation with Alzheimer’s disease. There are also less common types of dementia, such as frontotemporal dementia, posterior cortical atrophy, and Creutzfeldt-Jakob disease.

Currently, in the UK alone, 850,000 people are living with a diagnosis of dementia in one form or another. Across the world, almost 25 million people are similarly affected [4]. It is generally seen as being a diagnosis explicitly linked to older people, and indeed it is much more common for people over the age of 65. However, dementia symptoms can also manifest at a much younger age, with around 40,000 people aged under 65 in the UK being diagnosed with dementia. Not only are the emotional costs of dementia at an individual level profound, this condition also has a significant impact on the economy. Although there are various ways to try to put a figure on the economic cost of dementia, none of which are entirely accurate, one estimate is that dementia costs the UK economy £23 billion each year, and this figure is likely to rise [5]. This greatly exceeds the costs associated with cancer, heart disease, and stroke.

Most peoples’ understanding of dementia is that it refers to someone having a bad memory, and in particular forgetting who people are. Although this is indeed characteristic of many forms of dementia, there are other, less well-understood, problems associated with these conditions. At this point, we shall talk about dementia as a generalised entity as each diagnosis brings with it specific clustering of symptoms. So, then, from such a perspective, we can see the disease processes that result in dementia as severe and largely progressive, with a global decline in the cognitive function being the predominant symptom.

As mentioned, people with most forms of dementia experience problems with their everyday memory. Other common challenges include difficulty concentrating, making plans, dealing with problems, and making decisions. Activities that demand that tasks be carried out in a particular sequence, such as getting dressed or making a cup of tea, are also affected. Problems with vision and perceiving spatial layouts may mean that a person is more at risk of injuring themselves. The ability to communicate with others becomes increasingly impaired. At the same time, different symptoms are more likely to be associated with some forms of dementia than with others. We shall come back to this when we describe the different diagnoses in more detail. However, as the condition of dementia progresses, so escalating difficulties in each area lead to a profound reduction in a person’s ability to lead an independent life.

The focus of this book is on how individuals who are living with dementia respond emotionally to the diagnosis , and in particular how they react to the existential threats that surround dementia. As we shall describe, from the very early stages people have to face the worry and distress associated with a future characterised by deterioration, and this affects not only the person who has been diagnosed, but their family and friends alike. On top of this, as the disease progresses, it becomes harder for the person who is living with dementia to communicate their needs to others, which can result in their behaviour challenging those around them to find appropriate ways to respond. All of this requires both the person with dementia and their carers to dig deep into their own psychological resources if they are to retain resilience .

Stigma and Social Attitudes

Even though we are well into the Twenty-First Century, dementia remains a highly stigmatised condition. Perhaps the best-known description of what we mean by stigma was written by the American sociologist Erving Goffman : “While the stranger is present before us, evidence can arise for his possessing an attribute that makes him different from others in the category of persons available, for him to be, and of a less desirable kind – in the extreme a person who is quite thoroughly bad or dangerous, or weak. He is thus reduced in our minds from a whole and usual person to a tainted discounted one. Such an attribute is a stigma” (p. 53) [6]. Stigma is culturally bound. In other words, different views exist about what makes someone different. It could be the colour of their skin. It could be their accent. It could be that they have dementia. Stigma is damaging not only at a societal level, but it also provokes a significant physical and emotional toll on the person targeted. It makes people feel isolated, ashamed of who they are. They are likely to be excluded, disempowered [7].

The stigma surrounding dementia impacts on people in a number of ways. Because of stigma, many prefer not to seek help. The concern over what others might think and how they might behave towards them prevents them from obtaining the support they desperately need [8]. As a result, for some people, assessment and diagnosis is delayed and subsequent treatment is less effective [9]. Once people have been diagnosed, their fear that they will lose their identity , or become a burden to others, often makes it harder for them to talk about their dementia or admit to making mistakes [10]. Such concerns feed the stigma surrounding this diagnosis and can contribute to the person withdrawing from society and facing an increasing sense of isolation.

Even though there are now powerful advocates who encourage a greater openness about dementia, including many who are currently living with dementia themselves, many misunderstandings remain. For instance, many younger people tend to have somewhat ageist stereotypes of older adults in which they tend to see older adults (and especially people living with dementia) as “doddering but dear” [11, 12]. While this encourages a warmer, positive attitude towards people with dementia, there is also evidence that it is part of a process whereby younger people distance themselves from older people in general, and especially those living with dementia, instead seeing them as “not like me”.

Classifying Dementia

The current edition of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5 [13], organises the various dementia diagnoses under the category of major neurocognitive disorders (NCDs). These are conditions that share the principle feature of severely impaired cognitive function. Many of these NCDs are classified according to the underlying pathology, such as the case in Alzheimer’s disease. Other NCDs are classified based on behavioural and functional symptomatology, a good example being frontotemporal lobar degeneration.

Although overlapping symptoms frequently occur, each diagnosis of dementia brings with it its own characteristic cluster of impairments than afford unique challenges to those concerned. Due to the distinctive aetiology in each case, the prevalence and presentation of the many forms of dementia vary considerably. However, the process of assessing someone who is experiencing, for instance, problems with their memory, and then arriving at a diagnosis , is a complex one, fraught with many potential pitfalls. For instance, one of the main complicating factors interfering with early diagnosis is the presence of co-occurring mental or physical health conditions, such as depression, the symptoms of which mirror to some extent those associated with the early stages of Alzheimer’s disease. The fundamental problem is that no single test can definitively identify the presence of any of the different types of dementia. Instead, a number of different assessments tend to be used which, when considered together, collectively point towards a diagnosis of dementia as the most likely explanation for the problems that the person has been experiencing. Typically, therefore, diagnosing dementia is a process of excluding potential alternatives such as depression, delirium, or a vitamin deficiency.

We will now briefly list the more prevalent forms of dementia. However, in providing a summary of the main types of dementia, it should be borne in mind that there are many rarer forms of dementia that we do not mention.

Alzheimer’s disease.

The onset of Alzheimer’s disease is often described as insidious. It starts gradually, building up steam over time. The decline in function is progressive and, ultimately, severe. Although there are many different symptoms, these tend to begin with problems in remembering new information and a reduction in the fluency of language. As the illness progresses, other difficulties, such as with perception, coordination, and initiating a sequence of behaviours, begin to appear. Over time, the person with Alzheimer’s disease becomes increasingly dependent on carers for support.

Vascular dementia.

Vascular dementia, as the name implies, is the result of the oxygen supply to the brain being reduced due to a series of cerebrovascular accidents, or strokes, many of which occur undetected. The effects of these gradually accumulate over time resulting in cognitive problems affecting short-term memory and planning, as well as many physical challenges. The symptoms of vascular dementia, at least in the early stages, vary according to the location and extent of the lesions. Typically, vascular dementia is often diagnosed alongside other conditions, so that mixed forms of vascular dementia and Alzheimer’s disease is quite common.

Other forms of dementia.

Although Alzheimer’s disease, vascular, and mixed forms of dementia are the most common, there are also other causes of dementia. People who have been diagnosed with dementia with Lewy bodies often experience problems with alertness as well as disturbing visual hallucinations, nightmares, and Parkinsonian symptoms. In addition to cognitive impairment, a person with this condition faces disturbances in motor and autonomic functioning. Frontotemporal dementia (FTD)—previously known as Pick’s disease—is associated with marked behavioural problems, including disinhibition, lack of empathy, and ritualistic behaviour. Behaviour may be socially inappropriate due to extensive damage to the frontal lobes of the brain. One variant of this condition, temporal variant FTD, is characterised by profound language impairment.

Can Dementia Be Cured?

Current drug therapies focus mainly on redressing the lack of acetylcholine in the brains of those diagnosed with Alzheimer’s disease. Acetylcholine is fundamental to a host of cognitive processes, including attention. To boost levels of this neurotransmitter, drugs that prevent its breakdown in the brain—known as acetylcholinesterase inhibitors—such as donepezil have been developed. They work by blocking the enzyme, acetylcholinesterase, from metabolising acetylcholine. Although such drugs can be useful for many people, they are limited in their effectiveness. First, their impact is often relatively slight, and generally speaking, they can only be prescribed to people with Alzheimer’s disease who do not have other health problems. Secondly, they merely reduce the symptoms of Alzheimer’s disease and do not modify the underlying course of the disease. Finally, there inevitably comes the point where medication no longer produces noticeable effects. However, even though we cannot at present stop the illness, let alone reverse it, for some people the use of these medications alongside simple lifestyle changes mean that its progression can be slowed down.

Recently, the focus of research has switched to finding ways to accurately detect and diagnose different forms of dementia much earlier than is currently possible. If this proves possible, then there may be the potential to attack the disease sufficiently early on to effect some marked change in its progress. For instance, a colleague of ours at the University of the West of England, Myra Conway, is looking to identify how glutamate levels are controlled in the brain. Excess glutamate is toxic and results in neural degeneration. The findings from these studies will have a direct bearing on improving our understanding of what goes on in dementia [14].

While dementia cannot be cured, we now realise there is a chance that the onset of some forms of dementia may either be prevented or postponed. This is because the risk of developing dementia is the end product of a range of highly individual and complex interactions between our genes, the environment, and our lifestyle. From a disease prevention point of view, it has been estimated that around about one-third of cases of Alzheimer’s disease can be explained as being due to factors that could be modifiable [15]. In other words, elements that we have some control over. Aside from depression, potentially modifiable factors known to us include diabetes, hypertension, obesity, inactivity, and, of course, smoking.

Making changes relatively early on in a person’s life could, therefore, have dramatic effects later in life. Even rather simple alterations in behaviour could drastically reduce a person’s risk of developing dementia. Changes that reduce risk early on can have a profound effect on the overall numbers of people who develop dementia [15]. For instance, one consistent public health message is that “What is good for your heart is good for your brain” [16–18]. Thus simple steps like reducing levels of obesity, changing one’s diet, and taking more exercise, can all play a role in reducing the risk of developing dementia in years to come. If steps such as these mean that it proves possible to delay the onset of dementia by five years, then by 2030 the number of predicted cases of dementia in the UK would be reduced by over a third, and that equates to almost half a million people who do not develop dementia.

The Person Who is Living with Dementia

Memory clinics in the UK aim to make early and accurate diagnoses at a timely point for the individual concerned. In practise, this may not be the earliest possible point in time, but rather one that is right for the person with the diagnosis and their family . The earlier a diagnosis is made, the more time there will be, at least in principle, for the person with dementia and their family to make the necessary plans for the future. For them to be able to do this, they need to be provided with detailed and accurate information about the condition and the projected life-course of the disease. However, this is neither an easy nor painless task. Dementia has now superseded cancer as the most feared of all diagnoses [19]. The emotional implications of the diagnosis will inevitably play a crucial role in affecting how the person adjusts to the illness [20], an issue that we will explore throughout this book.

Given that a diagnosis as life-changing as dementia inevitably brings with it some emotional cost, it is essential that effective post-diagnostic support is provided to the person with dementia and their family afterwards. People living with dementia and their families need easily accessible information, advice, and guidance at a time when they are able to make use of this. These are all qualities that services often struggle to provide due to a lack of resources rather than from want of trying [21].

Caring for the Person Living with Dementia

Earlier in the chapter, we looked at the financial cost of dementia. When cost is broken down, we can see that £4 billion is spent on healthcare and state social care , £6 billion on social care, and an incredible £12 billion is allocated to unpaid or informal care [5]. Informal carers—the name given to a family member, friend, or neighbour who provides support and assistance without pay—are the bedrock of dementia care in the UK and most other countries. There are over 700,000 informal carers in the UK alone [5]. Around two-thirds of informal carers are women, around a fifth of whom still work, although often this is with reduced hours so that they are better able to care for their spouse or family member. Increasingly people find themselves needing to give up work entirely so that they can dedicate all their time to caring. This inevitably means a significant reduction in standards of living.

The role of carer is never an easy one and, for many, it is a role they never conceived they would be doing. Nonetheless, it is a role that many more of us will be facing in years to come. Although projections vary, there is no getting away from the reality that increasing numbers of families will have to adapt to care for older adults with multiple disabilities. The demand for informal care is on the rise.

Caring for someone with dementia impacts on people psychologically, physically, and socially [22]. Carers describe a range of feelings from shame and embarrassment to depression, hopelessness, and rage [23]. People cope in many different ways to the challenges they face. Some try to find practical solutions to problems, others focus on finding ways to deal with the emotions they experience, while some try either to avoid stressful situations or distance themselves from the person with dementia.

We often talk about unmet needs in relation to the person diagnosed with dementia, but it is important to also consider this from the perspective of the carers as well. Understandably, then, many dementia services provide a range of day centres, dementia cafés, and support groups in the community [24], as well as input from dementia-specialist nurses. Often local voluntary and community groups such as the Alzheimer’s Society will arrange regular visits from a befriender which have the added benefit of providing a break for informal carers [25]. Alternatively, it may be possible to arrange for the person with dementia to stay for a short time in a care home, or for a package of care to be set up in which professional care staff come into their house and support the person living with dementia in simple tasks such as getting dressed or washed.

Whatever else dementia brings, one thing is inevitable: the dynamics of relationships will change irrevocably [26]. One of the most challenging things couples and families face is the increasing need for support with everyday activities as the disease progresses. This growing dependence is one of the things people with dementia most fear . As with many things, improving knowledge and understanding of dementia can help. The majority of the things we all take for granted need to be reassessed and modified to take account of the increasingly severe impairments in even basic skills such as communication that someone with dementia will face. Helping carers to be aware of using simple strategies such as keeping sentences short, being mindful of one’s body language, and giving only two choices, can make substantial differences.

However, carers also need to be given the knowledge and helped to learn what is required to better face the challenges they meet. The behaviour of people with dementia presents many different challenges for carers and dementia services due to their difficulty articulating their needs directly, for instance. It can often be difficult to understand why a certain behaviour is occurring, let alone how to resolve it. Often, the training and support informal carers need to meet these challenges is either not available or is limited in nature.

Dementia as a Public Health Issue

Dementia is a significant public health concern [16] in the UK and in almost every other country. It is predicted that by 2021 there will be over one million people with dementia in the UK [27]. At the moment there is no cure and interventions vary in their effectiveness. Consequently, as we have argued above, in the absence of a cure, it is important to find ways of preventing dementia. Also, we need to develop strategies that will help people live a better life; to “live well with dementia” in the words of the former British Prime Minister, David Cameron. His vision for dementia care called for, “high quality, compassionate care from diagnosis through to end of life care ” [28]. Part of his government strategy called for society to become more dementia-friendly. This is where people understand about the condition and are coached in how best to support someone with the diagnosis. The notion of being seen to be a valuable member of a community is something that resonates throughout our book. Feeling that one’s life has meaning and purpose, that others care about you, are fundamental to a person’s sense of well-being. They play a vital role in helping people face the threat that dementia brings.

Given the clear disease trajectory, you would not be blamed for thinking that the impact of dementia was reasonably uniform across society. This is, unfortunately, not the case. Instead, there are apparent differences in how dementia impacts upon people that are related to a number of social factors, including socio-economic class [29–31]. However, to illustrate how the impact of dementia is felt differently according to social factors, we will focus on the role of ethnicity .

Ethnicity and Dementia

In the UK there are roughly 25,000 people who live with dementia from Black, Asian, and other Minority Ethnic communities. While this may seem a relatively small proportion of the overall number of people in the UK, this is set to change. Thus, while the total number of people who are living with dementia in the UK is expected to double by 2051, the number of people with dementia from Black and Asian communities is expected to increase seven-fold by this date [32, 33]. This higher rate of increase reflects both patterns of immigration to the UK and the increased risk factors for dementia—chiefly cardiovascular disease and Type II diabetes—experienced by people from some Black and Asian communities [34].

Not only are many older people from Black and Asian communities at higher risk of dementia, they are also likely to have more restricted access to, and different experiences of, dementia services [35]. Even where people from Black and Asian communities use dementia-specific healthcare services, they often do so at a later stage in the illness than do their white British counterparts. This means they are often not prescribed the appropriate medication for their condition [36, 37]. While there are many reasons for this, one important factor is that they do not see the mainstream dementia services provided by the health system or by charities as being intended for them [38]. Consequently, they are more likely to draw on more familiar services, such as those offered by their church, mosque, or temple, to guide them [39].

Ethnicity also impacts on how people experience dementia. This is reflected in the language different communities use to describe it. Different cultures talk about and think of dementia differently. This might not be immediately obvious. We are indoctrinated with Westernised accounts of dementia and the types of symptoms associated with this view. However, these can change over time. For instance, before the 1970s, the term “Alzheimer’s disease” was not used in the way it is understood today as referring to the most common disease causing dementia. Instead, at that time Alzheimer’s disease referred only to people under the age of 65 who had a form of dementia. Doctors distinguished between senile dementia, which was seen as a sign of old age rather than a specific illness, and presenile dementia [40]. So, the way in which we, as a society, think about old age, and the cognitive impairments that often accompany it, is not set in stone. Rather, they can shift and change over time. Similarly, the way in which different societies at the present time view these changes vary too.

To take just one example, a commonly used Cantonese word for people with mental health issues that include dementia is chi-seen, which simply means “crazy”. The character 黐 (chi) means sticky, and 線 (seen) means a line or string. It refers to the idea that two nerves in one’s brain have stuck together, thereby making one crazy. Other ways to describe people with dementia is the Mandarin word Chī-dāi (癡呆): the character chi translates into English as “idiotic” or “silly”, while the character dai means dull-witted [41]. More generally, within many Chinese communities, dementia tends to be seen as a form of normal ageing much as it used to be in Western medicine. Two commonly used terms are lao-ren-chi-dai (Mandarin) and lo-yan-chi-ngoi (Cantonese); both can be translated into English as senile or old people’s disease [41].

Consequently, within Chinese culture , any illness associated with the brain is often considered in pejorative or highly stigmatised terms as either the result of some failing or lack of harmony within the individual and their family . Dementia is therefore often linked with feelings of shame. Moreover, there is a strong expectation that member of the person’s family will look after them. Failure to do this is highly frowned upon, and these beliefs and expectations transcend both young and old, and extend across both traditional families and those more familiar with UK customs. But for how long? Long-held beliefs are being increasingly challenged by the demands of modern life that family members have to deal with. Many younger people are moving away to seek work in other towns, cities, and countries. The extended family unit no longer operates as it once did [42]. Nonetheless, there is a need to balance fears about becoming a burden to one’s family against acknowledging the pride felt from such support. Not an equilibrium easy to achieve nowadays [43].

Service Provision

In the UK, the support that the National Health Service provides for any illness is described in terms of pathways. The dementia care pathway sets out what happens to someone immediately following the initial consultation through to end of life care . This was heavily influenced by the
Living Well with Dementia strategy [44]. The crux of this approach is an acknowledgement that while different forms of care will be needed as a person experiences increasingly severe symptoms, there is a responsibility to ensure that, at all points on the dementia pathway, the person’s dignity is respected. This is achieved, at least primarily, by emphasising and supporting their capacity to be self-reliant and independent. This approach also stresses the need to assist the spouse or family member in providing the appropriate level of care for as long as it is required [45].

Although there are clear guidelines about what to do and what is needed, the reality has been that, all too often, basic standards of care have not been met. For instance, the Care Quality Commission produced a report showing that the provision of care varied considerably across different settings [46]. This report highlighted the need to provide carers with sufficient support, as well as for care homes to ensure that residents are offered a range of activities to improve quality of life. To raise standards, the Alzheimer’s Society has argued that care ought to be provided by appropriately trained staff [16], with the aim of ensuring that this is individualised so that it better fits the needs and expectations of the person with dementia.

We have already mentioned the emotional impact of a diagnosis . One way to help with this process is through the provision of counselling or support both before and after a diagnosis has been reached. By being guided through thinking about the implications of the diagnosis , people can often be helped to take control of their lives [47]. Post-diagnostic support , in particular, is vital if people living with the condition and their families are to be able to make the necessary adjustments to the condition, and also to assimilate dementia into their overall sense of who they are as an individual [48]. There is some evidence that attending a course or support group relatively soon after diagnosis can boost levels of self-esteem [49–51]. Where people have more severe levels of cognitive impairment, problem-solving and behavioural interventions can also significantly reduce levels of anxiety and depression [52–54]. For some carers of people living with dementia, psychological interventions that meet their own emotional needs significantly reduce the anxiety and depression they often experience [55].

As psychologists, we would argue that people living with dementia and their families should have access to a range of psychological therapies to support them both before and after a diagnosis [56]. Also, these interventions should be delivered by people who have been trained and who specialise in dementia care . As part of the overall care package, the various needs of the carer and wider family should also be met [56].

Conclusion

Before embarking on the rest of the book, we wanted to define what we mean by dementia and consider how context influences the impact that it has on people. Although dementia is not an inevitable part of ageing, age is a significant risk factor [57]. With the passing of each year, more and more people will develop one of the many forms of dementia. There is, as yet, no evidence that a cure will be found. However, even though this is the case, many things can be done to help improve the quality of the lives of those living with dementia. One major hurdle that needs to be tackled is the eradication of stigma . Society is heading in the right direction through initiatives where communities are made dementia-friendly, and people train to become Dementia Friends. There is, nonetheless, a long way to go before stigma is wholly removed, if that is indeed even possible. In attempting to tackle this issue, we need also take into consideration cultural differences. Different communities view dementia in distinct ways. These views impact on whether or not someone seeks help and who provides the care . It is vital for service providers to be aware that a one-size-fits-all approach will just not work. Instead, services need to be sensitive to specific cultural beliefs and values.

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Footnotes

1

One can argue that vascular dementia—where damage results from a series of strokes—can be seen as not progressive as long as further strokes do not occur to further incur harm.

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_3

3. Dementia as an Existential Threat

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

A diagnosis of dementia threatens not only many of the core aspects of what it is to be human, but leads, through a progressive deterioration, to death. Dementia thus represents an existential threat that creates profound emotional and psychological challenges for those who are directly affected by the illness. In this chapter, we argue that the psychological threat dementia represents needs to be viewed within the context of research from social psychology, and in particular Terror Management Theory (TMT). TMT proposes that humans experience a basic psychological conflict that results from having a self-preservation instinct on the one hand while on the other hand also knowing that death is inevitable. As a way of managing the distress that would otherwise arise from this knowledge, a series of defences operate to build psychological resilience and to reduce or to eliminate awareness of death. These defence strategies include the person investing themselves in religious and cultural belief systems which hold the possibility of spiritual immortality, as well as internal psychological processes such as repression and avoidance. We explore how the TMT framework might help us to make sense out of the experiences of people living with dementia.

Keywords

DementiaTerror management theoryExistential threatIdentitySelfDefence mechanisms

In the last chapter, we fleshed out how dementia impacts not only on the life of the person who has been diagnosed but also on their family and friends. We argued that a diagnosis of dementia brings with it a series of profound threats. In this chapter, we will begin to place some of these threats within a framework of research from social psychology and psychotherapy into how we all respond to existential threats.

The Threat That Is Inherent Within a Diagnosis of Dementia

As we outlined in Chapter 2, dementia is a label used to describe a group of illnesses that progressively reduce brain functioning. Early symptoms include problems with memory, such as finding the right words in conversations. Later symptoms can render the individual mute and unresponsive to all that occurs around them. As a consequence, the ability of an individual to function independently is steadily eroded. While dementia is treatable but not curable, the underlying disease process continues until the person dies. Indeed, dementia itself is now seen to be a leading cause of death.[1] To put it bluntly, people who receive a diagnosis of Alzheimer’s disease, or any other form of dementia, are therefore not only being told that they have a terminal illness, but are also being asked to make a protracted journey marked by deterioration and increasing dependency.

Of course, this is not to say that despite the awful nature of dementia, people cannot still “live well” with their condition. Indeed, the person-centred repositioning of people living with dementia that has taken place over the last twenty years has been one of the most important movements in mental health policy and provision. This perspective emphasises that people who have dementia have precisely the same needs for support, stimulation, and hope as we all do. As a consequence, while there is still much to be done, many services now realise the importance of providing a much higher level of support and help to people living with dementia and their families. Yet, while better support may help soften the impact of the diagnosis, it cannot remove the brutal reality of neurological deterioration. While good dementia care rightly emphasises the person’s potential to live well with dementia, nevertheless their experience of their dementia, is likely to be characterised by a series of threats. Throughout the disease, key capacities that are fundamental to a person’s identity will be lost. These capacities not only help give shape to who the person is, but they also contribute to the impressions others develop of them. The deficit in storing new memories that is characteristic of Alzheimer’s disease means that the narrative thread connecting the present with the past and the future begins to fray. Consequently, the person begins to struggle to remember what happened to them immediately before and what the future holds. Their ability to lead a meaningful life may be progressively compromised: their independence will gradually be taken from them, their sense of who they are will be threatened, their relationships with loved ones altered irreparably and, finally, even their ability to carry out the most basic actions will be swept away. Cumulatively, we believe that these threats are best described as “existential” as they concern those aspects of a person’s functioning that are core to their identity, their existence as a human being. Moreover, the person living with dementia is continually reminded of these threats—every time they forget a name, misplace a belonging, or struggle to make sense of what they are experiencing.

Dementia not only represents an existential threat that creates profound emotional and psychological challenges for those who are directly affected by the illness, but it also presents a threat to the broader community. This is because by far the most significant risk factor for dementia is age. Dementia sits waiting on the highway of our life, picking off a proportion of those who pass by.[2] Dementia respects neither wealth nor health. It affects people regardless of their class, gender, and ethnicity.[3] Moreover, as public knowledge and awareness of dementia is also increasing, so it is likely that more and more people are becoming worried about developing dementia themselves. As we mentioned in Chapter 1, almost two-thirds of the general population admit to having fears about dementia and that the older we become the more likely we are to be afraid about dementia.[4] Understandably, therefore, anxiety about developing dementia seems to be a widespread phenomenon, especially in mid-and late-life [1].

Given all of this evidence pointing towards many people seeing dementia as a threatening potential threat in their lives, it is likely therefore that most people who receive a diagnosis of dementia are likely to have had thoughts about, and perhaps even been anxious about, developing this condition for some time. Any fears about dementia that the person may have had before they were diagnosed will be strengthened and magnified as they are assessed in a memory clinic, and again before they receive the final, confirmatory diagnosis from the clinician.

At the same time there is, in our experience, a paradox. Despite the widespread fear of dementia, the vast majority of people (one study suggested that a figure as high as 98% of people over the age of 65 [2]) would want to be told the diagnosis themselves if they had dementia. It also seems to be the case that a clear majority of those people who are actually going through the assessment process at a memory clinic similarly want to know the outcome of their assessment. However, not everybody wants to know about a diagnosis with some studies suggesting that as many as one-third of people are clear that they do not wish to know [3, 4].

There is a duality here. In general terms, it seems accurate to say that while people are frightened of dementia, if they are diagnosed, they still want to know about it. This begs an important question: how do people manage the knowledge of their dementia, without at the same time becoming overwhelmed by that knowledge? This paradox is at the heart of our book and is something that we will return to time and again.

At this point, we just want to point out that the vast majority of people who are living with dementia carry this knowledge without much evidence that their awareness interferes with their lives. In this sense, awareness of the diagnosis does not necessarily lead to a long-lasting destabilisation of a person’s psychological equilibrium. Indeed, many people who live with dementia talk about an initial period of distress and upset followed by a gradual adjustment. Often, they seek out more about their illness, and make decisions about their future that are informed by their growing knowledge base. Generally, we are struck by how many people who are living with dementia display a resilient and wise approach to life. They both retain an optimism that life is worth living while also appreciating that their life is changing and that it will continue to do so. They both know about their dementia, but also manage not to know about it.

So how is it that people living with dementia manage this delicate balancing act? Well, first of all, although within the context of a disease such as dementia, the ability to both know about dementia and at the same time to not let it overwhelm one’s life is to be admired. Indeed, the aims of many dementia services is to support people so that they can make decisions about their life that are informed by the diagnosis, while at the same time continuing to live life to the full. However, when you widen the focus, one might argue that we all embody this duality of knowing and not knowing. Such ambivalence is central to how we perceive our own mortality: we maintain an awareness that life is finite while simultaneously withholding this knowledge from our conscious minds. Our everyday lives are not consumed by the knowledge that we will die at some future point in time—or even that we may develop dementia. We continue to lead our lives unabated. In this way we know we are mortal, yet choose (for the most part) not to know this.

The second thing we need to remember if we are to understand how people meet the psychological challenge that dementia presents, is that we all buffer or protect ourselves against the anxiety that being aware of the inevitability of ageing, illness, and death generates. This of course includes the possibility of developing dementia. As we will go onto describe, research in psychology suggests that we protect ourselves through creating worldviews that provide us with a sense of transcending death in some way: these provide us with narratives of our lives and our place in the world that are full of meaning, they enable us to be connected to people around us and they provide the basis for us to feel good about ourselves. All of these psychological resources enable us to all confront existential threats without being overwhelmed by distress.

We argue that these same human drives are the key to how people who are living with dementia can face the knowledge of their illness. While the neurological changes at the heart of dementia do not diminish the urgency of these psychological needs, the person’s ability to successfully achieve them does slowly decline. Moreover, the person’s ability to manage the threat that dementia brings with it also relies on those around them providing support. They rely on care being delivered in an empathic and supportive way as the example of Marion illustrates.

Marion: the need for life to have a purpose and meaning

Marion was diagnosed with Alzheimer’s disease at the relatively early age of 63. It did not come as a complete shock to her, as she had known for some time that something was wrong. A lifetime’s work as a nurse, then a ward sister, matron and ultimately clinical director of a large teaching hospital meant that when she approached her GP, she was all too familiar with what the potential diagnosis might be.

After the diagnosis, Marion took early retirement. She approached her dementia in a matter-of-fact way. She decided to sell her flat in London, reasoning that downsizing to the West Country would provide her with more of a nest egg and enable her to be closer to her sister. Marion had always lived on her own. While there had been relationships, she had never married. To Marion, her work had consistently been the central theme in her life.

Marion approached her relocation in the same, organised way that she approached her life. She used the same electronic diary and calendar on her smartphone that she had done for several years supplementing this with her own, personalised system of reminders stuck on doors, cupboards, and the walls. She continued to be a stickler for punctuality, turning up early for hospital and other appointments despite relying on public transport to cross the city. Every month she travelled up to London by train to meet her friends.

Dementia did not worry Marion unduly. She lived for the day and tried not to worry excessively about what was around the corner. What frustrated her, however, was the enforced boredom: she wanted to be useful—but couldn’t find anything meaningful to do. Her pension meant that she was financially secure, but what she needed was a role that kept her busy, enabled her to meet other people and which gave her a sense of being useful and valued.

Marion approached one charity shop after another to offer her services as a volunteer, but found that after she told them of her diagnosis, the promised return call either did not materialise or involved her being turned down with a vague explanation about risk and safety issues. The longer this went on, the more depressed Marion became. She felt lonely and isolated, spotting the signs of mild depression. She found herself worrying about the little things in life, noticing that she was becoming slightly obsessive about forgetting something important. None of this, she felt, was like her—it wasn’t the dementia that was the most significant change in her life, she explained to her sister, but the boredom and loneliness.

Eventually, Marion found a solution: she was put in touch with the nurse who coordinated a system of volunteers at the local hospital. Their role was to work with patients who were admitted with dementia, providing a spare pair of hands on the wards to back up the role of the nurses—sometimes sitting to have a conversation, or helping patients to drink or eat a meal. The coordinator’s post was partly funded by a grant from the Alzheimer’s Society and involved teaching staff and volunteers about the needs of hospital patients with dementia. This, so Marion reasoned, would be her ideal role as a volunteer. She could draw on her knowledge of hospitals while at the same time being useful in an environment that didn’t need to be educated about dementia. The volunteer coordinator checked on her every time that she worked, and liaised with the ward staff making sure that Marion was adequately briefed about the patients she was to befriend when she came onto the ward. During this Marion carefully took out her notebook and wrote down what she needed to know, exactly as she had done during her days as a ward sister attending the patient handover. Marion proved to be an ideal volunteer. She was always on time and unlike some of the volunteers, was never perturbed by hospital procedures. More importantly, the patients seemed to like her.

For Marion, her work once again gave her a sense that she had a role to play in life. She felt she could hold her head up when she was with her friends, and many of the symptoms of the mild depression disappeared. Her role on the ward helped her to face the existential threat of dementia. It provided her with a source of self-esteem, meant that her life felt meaningful once again, and gave her a sense of continuity between her past and present selves. As Marion began to feel whole and complete again, the emotional distress that had started to gnaw away at her subsided.

The Complex Case of Dementia

Providing support to someone who is living with dementia involves contending with a multilayered, complex network of issues. This is the case regardless of whether we care for someone with dementia in residential care or at home, whether we carry out assessments in a memory clinic or look after a member of our own family. Dementia impacts someone at many different levels: it affects the way in which cells within the brain communicate with each other (the neurological level); how that person makes sense out of their world (the cognitive level); and the way in which those roles that are central to self are maintained (the social level).

As humans, we are also unique in the sense that we have a knowledge of our own mortality. Our need to make sense of ourselves and of our life comes at a price: the knowledge that death is inevitable. For a person living with dementia, there is also the prospect of what might happen before death: the inexorable deterioration, the loss of independence and freedom, and the gradual stripping away of those aspects of oneself that provide meaning and substance to life. We believe, then, that there is a fourth level of understanding that is needed that frames the person’s responses to the the neurological, cognitive, and social changes that occur in dementia. This is the existential level.

An Existential Approach to Dementia

There is really no such thing as a single existentialist approach. Rather many different philosophers, psychologists, and psychotherapists have addressed a series of subtly different questions all aimed at resolving a shared human concern of how we create and lead a life with meaning when we know that death is unpredictable yet unavoidable. In this broad sense, while a clearly defined existentialist movement dates from the latter parts of the nineteenth and early twentieth centuries, existentialist themes occur much earlier than this, for instance in the writing of the Greek philosopher, Epicurus, who wrote, among many other things, about the inherent absurdity of trying to establish meaning amidst the chaos of short-lived lives.

Nevertheless, our understanding of how we humans engage with our own mortality comes mainly from much later philosophers such as Kierkegaard, Nietzsche, and Sartre. From this perspective, to be truly alive means being aware of the infinite possibilities that are open to us: we have the power to decide how to live our lives, what decisions to make, what paths to take. This creates both excitement and terror—a state that Kierkegaard described through the Danish term angst, meaning dread or anxiety. Subsequently, existentialist philosophers such as Heidegger distinguished between inauthentic and authentic responses to the world and to our mortality.[5] An inauthentic response to knowledge of our ageing would include a failure to acknowledge this. An authentic response, in contrast, frames death as an inevitable yet undetermined certainty. In effect the person is saying “I know I will die, but I don’t know when”. For Heidegger, an authentic life meant looking to the future with a resolute openness in full anticipation of our death rather than a life lived in denial of the inevitability of death.

The influence of existentialist thought pervades much of contemporary life. Existentialist issues are not just the provenance of philosophers but are also the subject matter of psychologists and psychotherapists, nurses and doctors, musicians and artists. At a fundamental level too, we would argue, they affect the person who is living with dementia, and concern everyone who is involved in providing dementia care. As we shall describe later on, many of these ideas permeate dementia research and care practices. While some dementia research has certainly embraced existential themes in the past [e.g. 5–7] more often these concerns have been implicitly rather than explicitly stated. However, they go to the heart of what it means to “live well” with dementia.

In this book, however, we shall frame our take on existentialism largely within the context of Experimental Social Psychology and more specifically Terror Management Theory [8]. This approach stems from the work of Ernst Becker, an interdisciplinary thinker who drew upon a diverse range of ideas and concepts and it is to this body of work that we will turn now.

The Denial of Death and Terror Management Theory

Becker’s most influential work was probably the Pulitzer Prize-winning, The
Denial of Death

, published in 1974 [9]. In this book he sets out how we, as humans, have developed strategies to ward off awareness of our mortality, thereby reducing any anxiety that might be caused by thinking about our own demise. This denial of death is, for Becker, a fundamental psychological motivation. The
Denial of Death had a significant impact on psychology thanks in part to the work of three American experimental social psychologists: Sheldon Solomon, Jeff Greenberg, and Tom Pyszczynski. They took Becker’s ideas and translated them into hypotheses that could be tested. In so doing, they created a research paradigm that has steadily accrued evidence that the fear of death lies at the heart of many human activities, from religious beliefs to owning a fast sports car, from the creation of monumental works of art to seeking the perfect suntan and determines both the decisions of judges and the search for celebrity [9, 10]. The theory they developed was termed Terror Management Theory and it has become one of the most influential and widely applied psychological theories of human behaviour.

In essence, Terror Management Theory states that escaping from the fear of death, and the emotional turmoil that this would create, is one of the primary driving forces of human action. We seek to mitigate the angst that would arise from contact with the existential truth of our human frailty, by investing in broader, more transcendent concepts. Terror Management Theory argues that humans have responded to knowledge of their own mortality by creating concepts of immortality. The clearest examples of this come from the promise of spiritual salvation and entry into an eternal life. However other more earthly cultural structures, be they nation-states or football teams or political movements also provide ways to transcend our own insignificance. They shape our lives by offering ways of framing how we understand ourselves; they provide rules and norms by which we lead our lives. Moreover, by becoming part of these groups, and by adhering to the cultural worldviews embodied in their values, we acquire companionship. We develop a sense that we are somehow greater than ourselves; a part not only of a wider community of fellow-minded spirits, but of something that will endure and, perhaps, outlast us. According to Terror Management Theory, the beliefs about the world and about reality that we share with others within these communities serve to reduce the potentially overwhelming terror that would otherwise result from an awareness of death. Becoming a member of a wider grouping reduces our anxiety by providing us with a sense that we are valuable members of a meaningful universe. In this way, we derive meaning from our cultural worldviews that provide us with a guide for how we should live our lives, and which therefore give us an increased sense of safety and security—in this life and beyond [8].

Thus, many cultural structures explicitly promise a form of immortality. This can be physical, in the sense that our names can be written down or indeed perhaps carved into the fabric of a building or monument. The promise of immortality can also be spiritual, being predicated on the certainty of a greater life beyond this world, one which is spent in paradise or in hell. Yet to overcome death and thus to achieve this immortality one must truly embody the values of a specific religion or culture. To be genuinely worthy or deserving of the honour of symbolic immortality, one must overcome those obstacles that are encountered in life, making some sacrifice or investment, be it financial or moral.

Through our investment in these cultural worldviews, so we acquire self-esteem. We see the goals that we pursue as accomplishments. With each achievement, we cumulatively earn enhanced status within these societies. Advancing one’s status in this way requires many years of dedication, often a lifetime of service. In this way, a sense of continuity about who we are develops across a lifetime. Typically people see themselves as embodying the same values, principles, and beliefs throughout their lives. Challenges to that inherent sense of continuity are disruptive, sometimes traumatic.

By investing ourselves within these transcendental cultural structures and groupings, so we are able to combat the anxiety that knowledge of our own mortality would otherwise bring. Our immersion within these worldviews defends us against the existential threat that death represents. It provides a protective network of psychological resources that buffer us emotionally against the knowledge of our mortality. The knowledge of our own mortality and our own insignificance in the broader scheme of life is made bearable because we are part of some larger, more extensive system. From a psychological perspective, this protective mechanism involves four key themes that we will return to time and again in our discussion of how people cope with the knowledge of their dementia: having a sense of purpose and meaning in life; a belief that we are people of substance, value and worth; having sustaining social relationships and connections; and continuity between our past, present and future selves.

Dementia and Terror Management Theory

What then does an existential approach and Terror Management Theory mean for how we understand dementia? In the chapters that follow, we will detail how research with people with dementia has consistently addressed a range of existential issues and how our own research is beginning to make a contribution to this work. Before we do that however, we wish to briefly outline how three strands of research that have grown out of Terror Management Theory provide important insights into the way in which the behaviour of people living with dementia may represent responses to existential threat.

One of the most consistent findings of Terror Management Theory research is that people respond to reminders of their mortality in somewhat distinct ways. When, for instance, people are either asked to explicitly think about themselves dying or are exposed to subliminal reminders of their mortality, the person reacts by actively defending their cultural worldviews. Similarly, when someone’s worldviews are threatened, then they are more likely to think about death. It is as if the two are linked by some invisible cord—a threat at one end results in a protective response on the other side. Research suggests that this duality can manifest itself in a number of ways among the general population. For instance, people may feel a stronger sense of connection to others who also hold the same worldview as they do. So, when people are reminded of their mortality (even if only unconsciously) then they are more likely to favour people who they see as more like themselves, and to discriminate against people who they believe represent a threat to their worldview [10–12].

If we transpose this into dementia care, then we would expect that a person who is reminded about their dementia is likely to respond in a similar way to someone who is reminded about their mortality. One such response is through an increased defence of their cultural worldviews. Just as a participant in a social psychology experiment who is asked to read an essay about their death responds in a way that embodies their cultural worldview so people with dementia also tend to cling onto those things that define them. Many are determined to continue doing, thinking, and behaving in ways that are consistent with the world that they used to know. They continue to invest enormous amounts of energy and resources in acting as if their previous identities are still viable and unchallenged even when this causes conflict with people who care for them. Simply being diagnosed with dementia does not therefore mean that a teacher stops being a teacher or a farmer no longer thinks or acts like a farmer. Their ability to perform these roles might be diminished but their essential identity remains intact. They continue to be a teacher or a farmer even when their ability to teach or to farm is compromised. Viewed from the perspective of Terror Management Theory the person who is living with dementia and who continues to see themselves as a teacher or a farmer, acting as if the way their world has structured hasn’t changed may be responding to an existential threat by retreating into the protective embrace of their cultural worldview.

It is also clear that many people with dementia actively avoid reminders of deterioration and illness such as a Memory Assessment service that challenge their identity. Instead, people tend to stay within those environments and relationships in which they feel safe. As we will outline in Chapter 4, this may take the form of staying close to familiar attachment figures such as a partner, searching for a long-dead parent or refusing to leave the safe-base of a house.

There is a second finding from Terror Management Theory research that we would argue has important implications for dementia care. As we described, research clearly shows that the two sets of thoughts—about one’s own mortality, and one’s view of the world—are linked. So, just as being reminded about death leads to a defence of the person’s worldview, so research on adults without dementia has also shown that questioning a person’s values and cultural beliefs leads to an increase in thoughts about death. In turn, this results in an increase in distress—what Kierkegaard termed existential angst. This research suggests that self-esteem and cultural worldviews have an existential function: as the integrity of a person’s cultural worldview protects the person from existential distress, so challenging these worldviews leads to an increase in thoughts about death, and a subsequent increase in distress.

So, is there any evidence that this process also occurs for people who are living with dementia? Do people who are living with dementia become more aware of their dementia and thus more anxious or distressed when placed in a situation that threatens their identity? We would anticipate that these threats would increase thoughts about dementia and undermine the person’s capacity to maintain an emotional equilibrium. Indeed, this is what seems to happen. Some people living with the condition give up taking part in hobbies and activities that had previously been central to their identity precisely because even a small failure due to cognitive impairment is disproportionately upsetting. This process of social withdrawal means that people may stop going shopping because they are afraid they will forget how to pay or avoid conversations with old friends because they are worried they will forget their names. From a Terror Management Theory perspective, we would argue that people living with dementia will be more likely to avoid situations that could potentially threaten core aspects of their identity; where a failure to perform to expected levels represents a fundamental threat to their worldview.

The final strand of Terror Management Theory research that we feel has important implications for dementia care is that some psychological factors, including self-esteem, seem to protect people against anxiety when their identity is threatened. This can be examined by providing people with different types of feedback and then assessing their reaction. For instance, in one research study participants who did not have dementia, completed a personality questionnaire and then received either positive or negative feedback. Naturally enough, participants believed that the feedback reflected their responses to the questionnaire. In fact, the feedback was entirely bogus, having no relationship to their performance. It was merely a way to manipulate their response. Those given positive feedback responded with increased levels of self-esteem and lower levels of anxiety and physiological arousal. This, in turn, increased their ability to tolerate threats to their identity. However, for those who were provided with negative feedback, the opposite effect occurred; anxiety increased and they were less able to tolerate threats to their identity [13, 14].

If we translate this into the context of dementia care, this echoes what so many families and carers of people who are living with dementia know instinctively: that an essential part of caring for someone involves helping them to feel good about themselves, and preventing them from being distressed when they make a mistake. In other words, enhancing self-esteem is central to helping the person to cope with their dementia. The majority of carers go out of their way to ensure that people are not exposed to the psychological consequences of their cognitive impairments: they collect bags that have been left behind, hunt for mislaid belongings and create routines to avoid boredom. All of this is done with a minimum of fuss and without drawing attention to the dementia. Moreover, many carers reluctantly know that there are times when they may need to act as scapegoats, accepting blame when things go wrong regardless of where the fault truly lies. All of this happens because carers know instinctively how destablilising it is for even small errors to be acknowledged. These minor lapses sap the person’s self-esteem, and signify a much more significant change—that, in this regard at least, the person is no longer who they once were. Dementia has diminished that part of them, potentially fragmenting their continuity of self, eroding their self-esteem.

A final, crucial outcome of this research is that it suggests a novel way to understand the lack of awareness found among those with dementia. Until now, such lack of insight has been explained by recourse to the neuropathology of the disease itself. From the perspective of Terror Management Theory research, a different possibility emerges. A lack of insight may for some represent a defensive response to an all too apparent awareness of their condition. It is their way of keeping the anxiety at bay that would otherwise flow from a conscious acknowledgement of the severity of their condition.

From an existential perspective, then, when the person with dementia continues to act as if a past identity is still valid, they are drawing upon on the past in order to buffer themselves against the threat of the present. In this way, the past acts as an existential resource to ensure that being reminded of the realities of their dementia does not cause them distress. This might take the form of a person with severe dementia in a hospital ward searching for their mother. As we shall describe in Chapter 4 when we look at how attachment theory has been used in dementia care, these attempts to find secruity are attempts to reduce distress and to regulate their emotions. We shall explore these issues in more detail in the coming chapters.

Conclusion and Summary

Applying Terror Management Theory to the context of dementia care directs our focus onto the way in which individuals buffer themselves against an awareness of their physical and mental deterioration and eventual mortality by mentally investing in cultural worldviews such as social groups such as a football club, national or political identities as well as religious beliefs. By investing in these cultural worldviews, people give their lives a sense of meaning, enhance their self and gain a sense of identity, purpose, and meaning [15]. People who are living with dementia respond to the multiple, shifting threats that the illness brings in precisely the same ways that we all respond to existential threats. If we are to help people face their dementia, we therefore need to support them in building up and utilising their psychological resources.

As we will describe in later chapters, dementia research has been transformed in the last twenty years, moving from being dominated by a deficit-based paradigm to a person-centred model of care [16, 17]. In effect, what we are arguing is both consistent with this person-centred approach and also extends it. We agree with the wide breadth of person-centred thinking that people should be encouraged to continue seeing themselves as good, valuable individuals, and that we should do all we can to help them hold close to those they love and those who love them. Even though they have been changed by the diagnosis, they still remain the same person they have always been. Where we wish to go beyond the current person-centred model is to assert that the consequences of not attending to people living with dementia in this way, is that we degrade their ability to manage the existential threat that dementia presents. This in turn makes it more likely that their emotional equilibrium will be disturbed and that out of desperation they will resort to increasingly maladaptive methods to boost their self-esteem, maintain a continuity of identity, become more socially connected to the world around them, and to find greater meaning in life. All too often these attempts to achieve equipoise in the face of existential threats are seen by those around them as further evidence of the underlying neurological impairment.

In the next three chapters we will turn to the existing research on dementia to argue that while, up to now, existential issues in dementia have rarely been explicitly identified, in fact they are an implicit theme running through many of the most important strands of research. We will then move on in Chapters 6 and 7 to outline our own research in this area that utilises methodological techniques from social psychology to test the applicability of Terror Management Theory to people who are living with dementia.

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Albinsson, L. (2002). A palliative approach to dementia care: Leadership and organisation, existential issues and family support, Comprehensive Summaries of Uppsala Dissertation from the Faculty of Medicine, 1196.

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Albinsson, L., & Strang, P. (2002). A palliative approach to existential issues and death in end-stage dementia care. Journal of Palliative Care, 18(3), 168–74.Crossref

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Albinsson, L., & Strang, P. (2003). Existential concerns of families of late-stage dementia patients: Questions of freedom, choice, isolation, death and meaning. Journal of Palliative Medicine, 6(2), 225–235.Crossref

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Becker, E. (2007). The Denial of Death. Simon and Schuster.

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Greenberg, J., Pyszczynski, T., Solomon, S., Rosenblatt, A., Veeder, M., et al. (1990). Evidence for Terror Management Theory II: The effects of mortality salience on reactions to those who threaten or bolster the cultural worldview. Journal of Personality and Social Psychology, 58, 308–318.Crossref

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Nelson, L. J., Moore, D. L., Olivetti, J., & Scott, T. (1997). General and personal mortality salience and nationalistic bias. Personality and Social Psychology Bulletin, 23, 884–92.Crossref

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Greenberg, J., Pyszczynski, T., & Solomon, S. (1986). The causes and consequences of a need for self-esteem: A terror management theory. In Public self and private self (pp. 189–212). Springer, New York, NY.

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Footnotes

1

https://www.alzheimers.org.uk/info/20073/how_dementia_progresses/…dementia/4.

2

https://www.alz.co.uk/research/statistics (p. 9).

3

Roughly 50 million people across the world are living with dementia in 2017, with this number expected to double in 20 years time, reaching 75 million people in 2030 and over 130 million by 2050 (https://www.alz.co.uk/research/statistics, p. 11).

4

https://yougov.co.uk/news/2012/05/22/are-you-worried-about-dementia/.

5

https://plato.stanford.edu/entries/authenticity/.

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_4

4. Dementia and Relationships

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

People who are living with dementia often describe their worlds as characterized by loss and isolation. Understandably, then, dementia research has emphasized the importance of the quality of social relationships for good dementia care. In the UK, Tom Kitwood described how a malignant social psychological world impacted on the personhood of the person living with dementia. Similarly, in the Netherlands, Bère Miesen drew on attachment theory to argue that many of the sometimes apparently bizarre behaviours of people who were living with severe levels of dementia were in fact attempts to create emotional security. What both perspectives show, however, is that the quality of the person’s social relationships plays a crucial part in determining how the existential threat of dementia impacts upon them.

Keywords

DementiaAlzheimer’s diseaseSocial psychologyAttachmentPersonhoodInsecurity

Judith:

And I just wonder where it’s going to end, that’s my fear, you know where am I going to end up, just before the end you know

Facilitator:

So what is the frightening, when you say about the future?

Judith:

Being, being useless, you know, not having all my faculties, I dread that, I dread that, it’s as if I’m going to sort of come to it one morning, perhaps, you know, and think ‘oh my godfathers, what’s left?’ you know I really worry about that.

From a discussion within a psychotherapy group [1]

We have argued above that dementia acts as an existential threat: the illness itself is progressive and incurable and eventually affects many of the most fundamental abilities that define us. The neurological impairments associated with dementia make it harder for the person to carry out many basic psychological tasks—such as to remember information, to recognise people and places, to make sense out of what is happening and to find the words to describe this. It also becomes more difficult to hold onto a temporal narrative that enables the person to link the past, the present, and the future. For many people, like Judith, who we have quoted above, their diagnosis of dementia brings with it the thought of what might be to come—the prospect that in the future dementia would rob her of her faculties. Given all of these cognitive impairments (as well as the many other impacts that dementia has), it might seem inevitable that the person’s sense of self becomes fractured or diminished [2, 3].

At the same time, many psychological theories emphasise that our identity or self—who we take ourselves to be—is not just reliant on what is happening within our brains—but is also contingent on our relationships with others. In this way the roles that we play, the nature of our interactions with the people around us, the groups, clubs, and societies that we are members of—all of these play a crucial role in defining who we are. Consequently, dementia not only makes cognitive decline inevitable but it also impacts on our social world. Thus one of the most important changes in how people with dementia are cared for came about by realising that as we are social beings, so if the social psychological world around the person with dementia is a caring one that continues to respect the person for who they are, then this would go a long way towards helping them to preserve their identity.

In this chapter, we will set out the way in which a Terror Management perspective can help us to understand more about the importance of the social world around people with dementia. If viewed through an existential lens, then much of dementia care research over the last twenty years relates to those key psychological resources that are at the heart of how humans respond to existential threat. We will address each of those existential challenges in turn. In this chapter, we will look at how people who are living with dementia gain security from being part of a wider social network. In chapter five, we turn to look at how people living with dementia seek to establish a meaning in life that preserves their self-esteem. Finally, in chapter six, we will examine research that focuses on how people living with dementia make sense out of their illness in a way that does not overwhelm them. We believe that framing dementia in this way enables an important new perspective to dementia research as it brings together what would otherwise be seen as separate areas of work. In so doing, we believe that this opens up exciting new avenues for understanding how people experience dementia.

Relationships Protect Against Anxiety

We’re born alone, we live alone, we die alone. Only through our love and friendship can we create the illusion for the moment that we’re not alone.

Orson Welles[1]

This quotation by Orson Welles neatly encapsulates an essential, existential reality: that no matter the closeness of our relationships, we can never be truly known by others—that nobody else can completely understand us, our motivations, our desires, and needs; no one else can truly walk in our footsteps. In this sense we are born alone, live alone, and die alone. Even within our closest relationships none of us can ever, ultimately, be known in the sense that our experiences of life are, by their nature, ours and ours alone. And yet, human beings are invariably social animals—indeed it is the development of the skills necessary for social life, such as empathy and the ability to understand the world from another’s perspective that has driven much of human evolution [4]. Thus, our passing through the world is experienced as our being one among many—we build families, are part of communities and feel, for the most part, that we live as a “we” and not as a solitary, single “I”. It is the closeness of our relationships that, for many, provides life with meaning and purpose.

From the perspective of Terror Management Theory, our capacity to build relationships with others is a key existential resource. Thus if people are reminded of their own mortality, then they make increased attempts to form and to maintain close relationships in order to reduce their distress. Similarly, when these relationships are threatened, then people are more likely to think about, and to become anxious about, their own mortality [5]. To use the language of Terror Management Theory, close relationships act to buffer a person against existential anxiety, and, when they are operating successfully, they therefore reduce the need for the person to use other strategies to reduce their anxiety.

The need for close relationships has also been one of the dominant themes (indeed, perhaps the dominant theme) within dementia care research in recent years. Without a doubt, the major reason for this has been the pioneering work of Tom Kitwood. His person-centred description of dementia as a dialectical interaction between Neurological Impairment and Malignant Social Psychology [5] has had a profound influence on our understanding of the experiences of people with dementia.

Kitwood’s interest in dementia was sparked by a request to help a group of nursing homes to evaluate the quality of care that they offered. From this, he began to develop the ideas that were to become the cornerstone of person-centred dementia care. Kitwood described dementia as a dialectical entity involving not only the loss of neurological functioning but also a change in the person’s relationships with other people [6]. These changes interact with the internal transformations occurring in the brain to assault the personhood of the person with dementia. Personhood was the term that Kitwood used to describe the nexus between the interior and the exterior worlds—the aspect of a person that makes him or her a unique individual. It was the way that Kitwood defined the self.

Personhood is not always an easy concept to grasp. However, central to Kitwood’s use of the term was the idea that no one can flourish in isolation. Instead, humans are inherently social beings with an innate need for contact with other people. However, the nature of this contact is vital: if it occurs in a cool, distanced, non-involved way that fails to fully acknowledge the individuality of the other, then this leads to dehumanisation. However, if the interaction involves two people meeting together in a genuine human exchange, then a true relationship can emerge. Kitwood described the interactions as constituting the social psychological world surrounding the person with dementia: in the second type of interaction, where an individual’s personhood was recognised and their well-being enhanced, then this suggested the presence of a Benevolent Social Psychology [7]. Conversely, where the personhood of an individual was not recognised, and the individual moved to a state of ill-being, then this would constitute a Malignant Social Psychology. Kitwood described malignant social psychology as a series of different social acts that impacted on the personhood of the individual [6]. An example of a Malignant Social psychological environment would be a nurse or carer treating someone with dementia as if they had no opinions and feelings, for instance, by undressing them in public or talking to a colleague about while ignoring the person with dementia is beside them. Kitwood would describe this as an instance of objectification [6].

Ktiwood’s descriptions of the interactions between a person with dementia and a malignant care world clearly fit into an existential framework—he identifies poor care as involving a failure to recognise the individuality of the person in which relationships are characterised by an absence of social connectedness. His description of person-centred dementia care has been probably the single most influential psychosocial model to emerge in the UK in the last 25 years. It has provided not just a paradigm shift in how we think about the impact of dementia, but in Dementia Care Mapping [8] it has provided a practical, training method for care staff as well as a means of measuring and enhancing the quality of care. More recently, his vision of person-centred care has been extended by Dawn Brooker through her VIPS model [9] in which services are invited to ensure that their actions Value people living with dementia, recognise the Individual uniqueness of the people they work with, make a serious attempt to see a person’s actions from their Perspective and provide the Support for people with dementia to feel socially confident and that they are not alone.

A key element in such person-centred services, then, is the extent to which they enable the person living with dementia to feel recognised as an individual and enhance their social connectedness. As such, dementia care which is truly person-centred meets a key existential need—to provide relationships that buffer the person against the sense of isolation and abandonment. It is no coincidence, then, that one of the key developments in person-centred care since Kitwood’s death has been in our understanding of how people with dementia respond to insecurity, and how their behaviour often reflects attempts to regulate their emotions and enhance feelings of personal security by maintaining their closeness to the key people in their lives.

Dementia Phenomenology: The Experience of Being Lost

A consistent feature in the accounts of people living with dementia about their condition is of a feeling of being lost or of living in a world that is both familiar and yet, at times foreign and unrecognisable. Indeed, the experience of being lost lies at the very beginning of dementia research. On 25 November 1901 Frau Auguste Deter was admitted to the Irrenschloss or Institute for the Mentally Ill and for Epileptics in Frankfurt by her husband, Karl. She was 51 years old and Karl, who was a railway worker, had requested that she be admitted because of memory loss, word-finding difficulties, disorientation, and her bizarre behaviour (she couldn’t sleep, would drag sheets across the floor and would scream in the middle of the night for hours).

As is still the case, as a new patient in the hospital, shortly after her admission Auguste Deter was assessed by a junior doctor—in this case by Dr Alois Alzheimer. He met Auguste the day after she was admitted and again on the 28th, 29th, and 30th of November, recording his impressions and comments in the hospital notes. We know very little more about Frau Auguste Deter, other than that she was born in Kassel in May 1850, and that she and Karl Deter married in the 1880s, and had one daughter together. However, the hospital notes that Alzheimer made and which were rediscovered in 1995 reveal that Auguste was in a bad way when she was admitted. Alzheimer describes her as exhibiting hallucinations and delusions, being seriously disoriented and confused with a perceptual disorder and a profound loss of memory and understanding. While our understanding of the nature of Auguste’s problems is limited by how little we know of her history and the context surrounding her admission, it is also clear that she would have been in great distress [10]. In his notes, Alzheimer records [11]:

When she has to write [her name], she writes Mrs and we must repeat the other words because she forgets them. The patient is not able to progress in writing and repeats, “I have lost myself”. During physical examination she cooperates and is not anxious. She suddenly says “Just now a child called, is he there?” She hears him calling…, she knows Mrs Twin. When she was brought from the isolation room to the bed she became agitated, screamed, was non-cooperative; showed great fear and repeated “I will not be cut. I do not cut myself”.

Later, Alzheimer records her as stating “I as good as lost myself” and “I am lost”. Auguste Deter never left the Irrenschloss. Over time, her condition deteriorated, she became more and more distant and her speech became utterly unintelligible [12]. Eventually she stopped talking altogether, only humming or shouting, often for hours on end and without apparent triggers. In her final year, she spent most of her time hunched up in bed. On 8 April 1906, just before her 56th birthday, Auguste Deter died. The Asylum’s notes record that cause of death was “septicaemia due to decubitus (the act of lying down); cerebral atrophy; arteriosclerosis of the small cerebral vessels, ?; pneumonia of both inferior lobes; nephritis”. Her records and her brain were sent on to Alzheimer at his request so that he could study whether her symptoms could be linked to changes within her brain. From this, he composed a short presentation describing Auguste’s presentation and associating this with the appearance of strange cellular plaques and tangles that he had observed using a microscope of tissue taken from her brain. Shortly after this, Kraepelin, Alzheimer’s boss at the laboratory in Munich, writing in his textbook described some cases of dementia identified by his junior staff, including that of “Alzheimer’s disease” as well as other illnesses described by his colleagues, Friedrich Lewy, Hans-Gerhard Creutzfeld, and Alfons Maria Jakob [13].

With the benefit of over a hundred years of hindsight, we might readily understand why Frau Auguste Deter might have felt lost in the Irrenschloss, and indeed many people living with dementia today talk about their life in a similar way. For instance, a small scale qualitative study [14] of three people who were living with dementia in a small residential home concluded that the central aspect that connected their experiences was their sense of loss and isolation. What emerged from the researchers’ observations and interviews was:

A feeling of loss of meaning and emptiness … being in a world of disorder, wondering and restriction. Living with dementia further meant feeling lonely despite being surrounded by lots of people. (Graneheim and Jansson [14], pp. 1399–1400)

The reason why loss and separation are so central important for dementia care, so we would argue, is because of the existential threat that dementia creates. As dementia erodes a person’s capacity to communicate and to understand the world, so the methods that a person has previously used to create security are in turn undermined. However, in order to understand how these feelings of loss and separation emerge, we need to turn to the paradigm of attachment—which has significantly impacted on both Terror Management Theory [15] and dementia care [16, 17].

Attachment and Dementia

The term “attachment” describes the emotional bonds that link people together [18]. The types of emotional bonds that people develop during their lives stem, in large part, from their experiences in the early months and years of their life. When a baby or a small child is in distress, then he or she cries. Depending on how the adults around that child react, so the baby learns rules both about the behaviour of others and about the effectiveness of their own behaviour when they are in distress. At its most basic they may learn, for instance, that if they cry then they are picked up and soothed. Alternatively they may learn that crying doesn’t alleviate their distress but is punished. What the child learns is therefore dependent on the response of their parents or caregivers.

Over time, the child develops a set of unconscious rules that connect distress, behaviour and the response of people around them—rules that are sometimes referred to as “Internal Working Models” of attachment. However, regardless of what the child learns about themselves or others, these rules or internal models stay with them over the course of their lives and become the way in which the child, then the adolescent and finally the adult respond to stress. This becomes the person’s attachment style—a way of relating to other people that has been implicated in events in later life from the person’s choice of romantic partner [19] to the likelihood of their developing mental health problems [20].

Attachment relationships are therefore important for psychological security with positive, or secure, attachment relationships providing a source of comfort and assistance to the individual in times of need [21]. Conversely, if the child develops an internal working model of attachment in which displays of emotion are either punished or responded to intermittently, then as an adult they will have an attachment style that predisposes them to either avoid emotional contact or to become anxious about being abandoned. These attachment preferences, or styles, operate across the lifespan [22] and are activated in times of stress [23, 24]. Consequently the way in which a person responds to stressors such as trauma or loss, and the extent to which they are able to draw on relationships to regulate their emotions and thus to cope with stress will depend on their attachment styles [23].

One of the first researchers to suggest that people who are living with dementia respond to distress in terms of their attachment style was Bère Miesen, a Dutch psycho-gerontologist. His initial research looked at levels of attachment-seeking behaviour on a ward [25, 26]. To do this, he adapted a well-known research methodology used extensively to study the attachment behaviour of young toddlers, called the “Strange situation” test [27]. In the original strange situation test, a mother takes her young child into a room that they have never visited before and plays there for a short while. After a few minutes a stranger enters and tries to play with the child. The mother then leaves and returns after a brief period. All the while, the child’s responses are being monitored by the researchers to see how they respond to being separated from their mother: a securely attached child will be upset at first when their mother leaves, but can be comforted when she returns. They will also, with mum’s encouragement, respond to the stranger. An avoidant child will show less emotion either when separated or when their mother returns; an anxious child will be distressed at the strangeness of the entire procedure, and especially when their mother leaves. Although the anxious child can be comforted, this takes much longer and they may well be angry at their mother.

Miesen adapted this procedure for people with dementia and their carers. He found exactly the same sort of responses in these elderly men and women as the Strange Situation researchers had found with young children and their parents. Some people with dementia were perturbed when their partners left, but were comforted on return and could interact with the stranger. Others were apparently oblivious to whether or not their partners were there, while a third group of people with dementia were highly distressed by the novelty of the whole experience. For Miesen, this was what he had expected to see—people were responding in exactly the same way as attachment theory would predict—with secure, avoidant, and anxious styles respectively.

Importantly, Miesen also looked more generally at 40 participants aged between 64 and 90 who lived in a Nursing Home [28]. He saw similar sorts of attachment-seeking behaviour depending on how badly residents were cognitively impaired. People with higher cognitive abilities were more likely to show what he termed as “overt” attachment-seeking behaviour during periods of separation such as family visits. Although they were upset when their partner left, they enquired after them when they were no longer present, and were pleased to see them on their return. Where residents had more severe impairments, however, then they still showed attachment-seeking behaviour, but the type of behaviour changed: they were more likely to act as if they believed one of their parents was still alive, for instance hunting through the home for them, or demanding to lay the table for a meal in anticipation that their mother or father would soon be coming. Miesen described this behaviour as Parent Orientation and Parent Fixation in Dementia (POPFiD) but it is more commonly just referred to as “parent fixation” [26]. He proposed that in the early stages of dementia overt attachment behaviours, such as calling out or crying, can be used to seek reassurance from familiar others. However, as the dementia progresses, and as orientation to the outside world diminishes, so the person is less able to use these overt attachment behaviours to reduce their insecurity. These people, so Miesen claimed, responded to the permanent feeling of being in a Strange Situation that their dementia creates by behaving as if their most important emotional figures are still alive—it is as if it is better to live in an imaginal world where your mother or father can visit and comfort you, than one in which they have died and the reality is that you are alone and can no longer be rescued.

Other researchers have tried to extend Miesen’s findings. Parent fixation seems to be quite common in many Nursing Homes, with prevalence rates of up to 60% [17, 26]. Hannah Osborne [29] interviewed 51 people with dementia about their parents, while a relative (usually their spouse) completed measures assessing the person with dementia’s level of cognitive impairment and the behavioural consequences of parent fixation as well as their attachment style. Their findings suggest that parent fixation seems to be more common in individuals living within a nursing/residential environment than those continuing to live at home with their spouse or another member of their family. This is precisely what the theory would suggest to us—that when an attachment figure is present in real life, then the person has less need to fall back on a symbolic figure.

It should be pointed out that studying the attachment style of people living with dementia can be challenging. It is, for instance, very difficult to measure a person’s attachment style after they have developed dementia, especially when people have more severe levels of impairment. It is possible that their previous (known as premorbid) attachment style may have caused them to respond in this way regardless of the level of their cognitive dysfunction. However, ideally, we would want to study people over a long period of time from before they developed dementia until after they have been diagnosed, but this type of research presents many challenges, not the least of which is cost.

Despite these reservations, there is now good evidence to support the belief that attachment styles, and close relationships play a vital role in dementia care [21]. Indeed there is evidence that both premorbid personality [30] and the quality of the relationship between carers and people living with dementia around the time of their diagnosis are both associated (albeit weakly) with challenging behaviour later on in the illness [31]. Overall, this research into attachment and dementia suggest that behaviours such as parent fixation of people with more severe levels of dementia arise from an interaction between the psychosocial environment and the person’s attachment style and premorbid personality [17, 32]. Such behaviours are, in large part, a reflection of how the person responds to the insecurity that their dementia creates for them, combined with the responsiveness of the social world around them.

From a Terror Management perspective, these close relationships serve as a buffer protecting the person against anxiety that would otherwise arise from the insecurity that is occasioned by their dementia. However, the way in which people use relationships to reduce their distress varies. For most people (especially those with a secure attachment style), having the companionship of others, whether this is within marital or family relationship, or whether this is a new relationship with carers in residential care, is the bedrock of care in just the way that Kitwood described [6]. For other people, those who in attachment terms would be thought of as having an anxious attachment, relationships continue to be of fundamental importance, but their insecurities and sensitivity to being abandoned mean that they become especially fearful—and this anxiety and distress makes them even harder to reassure and to care for. Finally, for those people who fall back on an avoidant attachment style, then they are more likely to project out their distress and to be suspicious and fiercely independent. This sort of attachment behaviour keeps other people at a distance—and means that the type of relationship people with avoidant attachment styles need are those that are respectful of their status and mindful of their independence. As their cognitive impairment grows worse then these sorts of relationship become harder and harder to sustain.

Playing messages from carers to people with dementia using greetings cards

As Bère Miesen has shown, when people who are living with dementia are separated from their primary sources of security—their partners, family, and homes—then this can precipitate separation anxiety. However, such separations are often inevitable—and consequently it is important to try and identify ways of meeting the person’s need for security [33]. Although medication can sometimes help, as this can have side effects it is important to try out non-pharmacological options. One such intervention that has a relatively strong evidence base is Simulated Presence Therapy or SPT [34–36]. This involves playing a recording of a familiar voice to the person with dementia. However, while SPT does indeed seem to work well with some people, in practice it has been difficult to implement on busy wards or within residential care—in particular it is not always east to find a way to help a carer to record a message, and then to play it back to the person. Consequently, SPT is used relatively infrequently within clinical services.

At a local memory café meeting, RC made a brief presentation to a group of carers and mentioned the problems around using SPT. Shortly after this, he was contacted by Alex Brooks, who was caring for his mother. It had occurred to Alex that if he used a recordable greetings card, then his mother could take this with her when they were separated—and that this would help her to remember who he was, and reassure her that he would soon be with her.

RC started to use this in his work as a clinical psychologist—and although not everyone who tried it found it helpful, for some people it clearly helped. One woman in particular made up a card and gave it to her mother who was living in a Nursing Home. She later told RC that it was the best present she had given her mother in years—she used it all the time and it had helped her to feel she wasn’t forgotten.

We then began to use the cards more systematically and began to refer to them as Personal Message cards [37]. One avenue for distributing them came about through the Bath Memory Technology Library[2] and showed encouraging results. For instance, one carer told us that the card “reassures mum, lets her know we are thinking of her”. Annie March (an Art Therapist), used the card with Val, whose husband Fred was in a nursing home and who could no longer speak. Val wanted to use the talking card to let him know that she would soon be in to see him as she sometimes felt that when she left him he might think she was never coming back. Annie helped Val to make the card, and as Fred was a keen artist so Val put an image of herself and his painting on the card. Annie also suggested that she incorporate some of his favourite music in the message—being played on the piano that Fred used to play in their living room. When she used the card Val reported that Fred’s “eyes light up… maybe it’s the music, but that’s what it’s all about”. Val felt that it helped him to recognise her and told Annie that the card was used both by staff at the home and by their children when they visited him as they feel it helps them to connect with their Dad again.

Conclusion

In this chapter we have suggested that the social psychological world surrounding the person with dementia, and in particular their social relationships and their attachment style, all play an important role in protecting the person from the feelings of distress that would otherwise be caused by their neurological deterioration. Depending on the person’s attachment style, it is the quality of the person’s relationships that determines whether the insecurity engendered by their dementia will break through or not. For someone with a secure attachment the best buffer against this existential angst is to feel loved, wanted, understood and close to someone. For a person living with dementia who has an avoidant attachment style, it may be more important to be reminded of the routine and structure of the day. Regardless of the person’s attachment style, however, what is important is to find a way of using relationships to hold their existential distress at bay. The quality of the person’s social connections thus plays a profound role in determining the extent to which dementia will impact on their well-being.

At the same time, there are other psychological resources that play an important role in mediating the impact of dementia: in the next chapter, we will address the role of self-esteem in protecting the person against anxiety, while in Chapter Six we will look at how people living with dementia need to find a way to adjust to their diagnosis and to integrate this into their personal narrative without, at the same time being overwhelmed by the emotional implications.

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Footnotes

1

https://www.goodreads.com/author/quotes/67899.Orson_Welles.

2

This video (https://www.youtube.com/watch?v=Mipwh4k-FuA) describes the way the technology library works and features Alex talking about how he came up with the idea.

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_5

5. Identity and Self-Esteem

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

One of the ways that dementia has an impact on a person is by compromising their ability to perform even relatively basic activities such as remembering names or managing a sequence of tasks. Some people cope with the embarrassment that might otherwise result from having these failings exposed by withdrawing from social activities such as going shopping or meeting friends. While this might help the person living with dementia to hold onto their self-esteem, it can also result in their becoming isolated and depressed. Similarly, other attempts to maintain a sense of self and identity can also lead to conflict and tension with those who are caring for them. For instance, the person living with dementia may try to insist that they have not changed and that there is nothing wrong with them. Many carers develop a fine-grained ability to protect the person from the psychological consequences of their mistakes, including, at times, accepting the blame when things go wrong even if this is unjustified.

Keywords

DementiaAlzheimer’s diseaseSelf-esteemIdentityPositioningSelf

In the last chapter, we set out how the existential threat that dementia represents can create a profound sense of being lost, and thus set off feelings of insecurity. As a consequence, some people living with dementia seek to regulate this distress through the attachment-seeking strategies that Miesen and others have described—parent fixation, shadowing their attachment figure or by calling out for help. Within a person-centred model of challenging behaviour, these behaviours are seen as communicating that there is an unmet need—namely for a greater level of security (e.g. [1, 2]). From the perspective of Terror Management Theory (TMT), the security that close relationships bring provide a buffer against existential threat—they help to reduce the anxiety that someone living with dementia would otherwise feel when they are reminded of their condition.

In this chapter, we will turn to another psychological resource that protects the self against existential threats such as dementia—that of self-esteem. In order to understand how holding onto self-esteem can drive behaviour, we will start by painting a typical scenario that is repeated time and again. This pattern of behaviour typically starts with the person noticing that they are prone to forgetfulness: perhaps they forget their car keys, can’t remember the name of a close friend, or get lost on a familiar route. At first they are likely to put this down to old age—and try not to worry about it. However, as one incident follows on from another, so it becomes more perturbing. It may, for many, be the catalyst to seeking help. Should this eventually lead to a diagnosis of Alzheimer’s disease or another form of dementia, then while this does provide an explanation for these problems, it is will also add to the person’s sense of anxiety that their memory will let them down. As one of our research participants said: “It’s like being given a ticking time bomb and you never know when the next alarm’s gonna go off and So you got that in your mind all the time yea I’, good now I don’t think I’ve forgotten anything today and all that sort of thing. And in the back of your mind you know that you’re not right, it’s happened once, could it happen again? and uhhh so you’re always alert” [3].

For many people who are living with dementia, this anxiety at being let down and exposed as someone who makes mistakes is hard to bear. They become frightened of how others will see them—fearing that they will be seen either as being somehow mad or simply unthoughtful and uncaring. It is also possible that people fear this social exposure because it will bring home to them personally, just how much they have changed. For many people this exposure of their cognitive deficits impacts on their identity, and more specifically reduces their self-esteem—that is to say that their view of themselves as people will be diminished in some way. Consequently, their behaviour changes—they begin to avoid everyday tasks for fear that these will expose them—they stop going shopping, they give up their hobbies or they no longer attend social events. They may also avoid identifying themselves as having dementia or even insist that their cognitive faculties remain undimmed. All of these changes in their behaviour act to preserve their sense of self-esteem—a precious psychological resource that buffers them against existential angst.

Identity, Positioning, and Dementia: The Need to Preserve Self-Esteem

This need to preserve self-esteem leads not only to these strategies of avoidance, but is also played out in the minutia of social interactions. This has been the subject of the research of American psychologist, Steven Sabat whose work has emphasized a number of key features of how dementia impacts on the identity of people who are living with dementia [4–6]. The first claim that Sabat makes is that people who are living with dementia are, like all of us, semiotic beings. What he means by this is that humans are meaning-making creatures: we have an innate drive to make sense of the world within which we live—to understand its meanings and its nuances. This understanding is personal—the way in which any one of us understands the world is likely to be different to the way in which any other person sees it. Sometimes the difference in these perspectives is subtle, and sometimes they are radically opposed. However, regardless of any differences between us, it is the way in which each of us understands the world that drives our behaviour. Having created an understanding of the world, this then provides our motivations and generates our responses.

The second key feature of Sabat’s work is his emphasis on how this process of sense making relates to our identity and in particular to threats to our self-esteem. Our interpretation of the world—the sense we make out of our lives—often revolves around a wish to assert our sense of our own identity and to enhance or at the very least, to maintain, our self-esteem. This concern with identity permeates almost every interaction that we have—if, for instance, during a conversation there is even the mildest suggestion that our social standing has been compromised, then we are quick to notice this. For Sabat, social interactions such as these are best understood as a sequence of acts of social positioning in which each threat to self-esteem evokes a response that in turn leads to a further act and reaction and so on. These sequences of social acts, interpretations, and responses have the form of something of a social dance with each person responding to the moves of the other. For the person with dementia the imperative of preserving, enhancing and maintaining their self-esteem continues unchanged. What alters, however, are the opportunities to take part in activities and interactions that provide self-esteem. This is why many thoughtful dementia care workers take great care to provide just such opportunities—from going hiking through the Wiltshire countryside[1] to providing a woman with dementia living in a nursing home with a chance to help lay the table for dinner as she had done throughout her life. Where, however, people see themselves as being positioned in negative terms, they may react against this, as the case of Tom illustrates.

Tom: The Defiant Teacher

Tom was a 64-year-old man who after three years of assessments and investigations into the causes of his cognitive problems was given a diagnosis of Alzheimer’s disease. For Tom, however, the whole process of assessment had been frustrating and pointless: he insisted that there was nothing wrong with him and indeed on several occasions during his assessment he had cancelled appointments with the memory team or at the hospital. He had only resumed attendance after Helga, his wife, had threatened to leave him.

Tom hated any suggestion that he was not capable of doing the sorts of tasks he had taken for granted over the previous fifty years of his life. In particular, he deeply resented the fact that he had been told that he would have to give up driving. Not only did he resent the implication that he wasn’t a good driver, but he bristled at the suggestion that if he was to continue driving then he would put others at risk. The only way that he could be stopped from driving was for Helga to hide the car keys—something that led to bitter and frequent rows.

He was referred to the memory team’s psychologist, RC, to see if he could be helped to accept his diagnosis. In trying to work with Tom to help him to think about his problems, R tried to engage him in talking about what had changed in his life—starting with the strains of growing older, needing glasses and losing the strength in his muscles. However, as soon as the conversation touched on any matter relating even indirectly to dementia, Tom quickly asserted that he was still quite capable and did not require even the slightest help.

Over time, Tom’s cognitive abilities continued to fade: on several occasions he had gone for a walk but ended up returning not to his own home, but to the house that he and his wife had moved out of twenty-five years before. The rows with Helga were intensifying and when she needed to attend a family funeral, Tom refused to go with her. Helga felt he could not be left on his own, but was determined that Tom wasn’t going to stop her going back to Germany for the funeral. Instead, it was arranged for him to stay for a few days in a local residential home that offered short-term care, so that she could attend on her own. Soon after arriving Tom asked to go home and became angry and upset when this was refused. Faced with this dilemma, the home asked the memory team’s Psychiatrist to assess Tom in his clinic and R agreed to take him to the appointment.

R found a puzzled and frustrated Tom in the Home and persuaded him to come to the clinic. After they arrived, they sat together, waiting for Tom to be seen. R was sad and despondent, as it seemed the inevitable outcome of Tom’s refusal to accept that his life had changed and that he was now dependent on help was that the Psychiatrist would consider recommending medication—treatment that he knew Tom would likely refuse. For the first time in their relationship, Tom and R sat together not opposite each other, and, for the first time spoke more as friends than as a psychologist and a client. As they looked together at the magazines in the waiting room, Tom began to stumble over his words, saying how frightened he was at what was happening: he knew that he was not the man he used to be, and didn’t know what was to come in life. He spoke about his feeling that he had let Helga and his family down, and that although he pretended that everything was OK, deep down he knew that things were going terribly wrong.

All too soon, the nurse came to find Tom and told him that the Psychiatrist would see him. Together he and R knocked on the doctor’s door and stepped into his narrow office. At the far end of the room, the Psychiatrist was seated behind a large desk and, looking up from his notes, indicated for Tom to sit down. His first words were “So, tell me Tom, for how long have you had a problem with your memory?”. At this, the old Tom reappeared and he replied angrily—“I don’t know what you mean, I don’t have any bloody problem with anything!”

In the space of a few minutes, Tom had moved from a position of anger and suspicion to one of authenticity and reflection and then back again. For Tom, a sequence of changes in social positioning had led him first to a few minutes of engaging with the sadness of his dementia, but then caused him to bristle against the status of being a patient. For the psychiatrist, Tom’s response confirmed the truth of a well-worn storyline about people with dementia. All too often their neurological impairment meant that they were prone to denial and irrational anger.

One of the difficulties that Sabat points to is the way in which the attempts of the person with dementia to re-position themselves as people of worth may in fact be misunderstood by people around them. This is because so many of the stories about dementia emphasise the person’s neurological deficit—so, for instance, Tom’s reluctance to acknowledge his dementia risked being viewed by the psychiatrist through a medicalised lens of dementia, perhaps as a sign the frontal lobes of the brain had been damaged causing him to be in a state of denial. Consequently, a person’s response to the threat to their self-esteem may instead be re-interpreted as further confirmation of the illness—a further symptom of the dementia.

For people like Tom, whose self-esteem is fragile or is overly dependent on those aspects of life that are most reduced by dementia, then the confrontation with the reality of cognitive impairment is especially threatening. For these people, life’s meaning is often to be found through a reaffirmation of what has been, not by engaging with what is now. The present is made unbearable both by concerns over what is already with them and by a fear of what is yet to come. Consequently, much of the emotional burden of dementia impacts on self-esteem [7]:

Again and again, what people with dementia tell of is how they feel they are useless and unproductive, incompetent, or quite simply foolish and crazy. People perceive themselves as being a burden to others … they feel unproductive and unimportant, unable to live up to their previous roles in life … knowing their diagnosis does not stop people from feeling inadequate and disappointed in themselves. They say things like “You think ‘Am I just somebody that’s going a bit stupid or what?’” (p. 39)

But why is it the case that self-esteem is so important? Why is it that people with dementia, just like all of us avoid those relationships that make them feel “a bit stupid” and seek out those that make them feel that they are people of value and substance? If we place this need for self-esteem within an existential framework, then its importance becomes clearer—self-esteem creates a psychological buffer against the anxiety that comes from knowledge of death. Typically, from an early age, we do this by becoming part of social or cultural groups—because living life within these groups provides us with a set of norms and rules which, if we meet them, allows us to feel good about ourselves. Thus, for Tom, his self-esteem came from being a teacher—and not just any teacher, but a good teacher—someone who had achieved things and helped others to achieve things. For Tom, his dementia presented him with a series of challenging questions. How could a good father forget the names of his own children or a good husband let down his wife by forgetting where they lived? How could he accept being diminished by allowing himself to think that he wasn’t able to drive? All of these signs of dementia were inconceivable for Tom—acknowledging this reality threatened his self-esteem and the sense of meaning and purpose that his identity provided to him. Tom’s dementia threatened his sense of self and identity—it compromised the very things that made him who he was.

What many people with dementia do, therefore, is to structure a world in which preserving their self-esteem becomes the central feature of their life. They can’t tolerate a threat to their self-esteem, however absurd and misguided this makes them appear to those around them. Indeed the more others seek to restrain them, or to bring them back into a world in which the absurdity and delusional nature of their view of themselves and other becomes apparent, then the more the person with dementia insists on their legitimacy and the more likely it is that conflict and tension will arise. Sometimes people with dementia try to make themselves feel better by holding onto the world as it was, by avoiding situations where they might fail, by going over past triumphs and by blaming others when something goes wrong. So a woman who has dementia insists that she still cooks and cleans the house as she always has done, even when she occasionally puts the butter away in the oven. A man with dementia might blame his wife when he misplaces his glasses for the fifth time that morning. A mother insists that her house is clean, when her daughter can smell the mould as soon as she steps over the doorstep.

Yet this behaviour is almost always counter-productive—it alienates and upsets the people around them—the people that they actually rely on most. For the husbands, wives and children whose hard work and care is being denied in this way, this can feel deeply hurting. Moreover, as Sabat points out this sort of behaviour confirms, at times, the prejudicial storylines that others have, that this is crazy behaviour—a further sign of confusion and poor memory. Maintaining self-esteem in this way leads to further conflict and alienation. So why do people with dementia do this? The answer to this question is that it is the same thing that drives all of us to create a world in which we seek to preserve our self-esteem. According to TMT, to have high self-esteem is to have a sense that one is not merely someone destined to die and be forgotten but someone who has lived a life of purpose and significance, someone who has made an enduring and lasting contribution to a meaningful and enduring world [8].

So far we have largely focused on the way in which people with relatively low or moderate levels of cognitive impairment, like Tom, seek to maintain their self-esteem. However, when we look at the lives of people with more severe levels of impairment, then we see the same types of processes being repeated, even if the person’s capacity to make sense of the world around them is more restricted. One example of how this occurs was provided by the Swedish researchers Lars Christer Hydén and Linda Őrulv who have explored the meaning that people living with dementia in Residential Care ascribe to the world. One particular area of concern for them was what in psychiatric or cognitive neuropsychological terms would be described as confabulation [9]. Broadly speaking, confabulation can be defined as false statements or narratives about the world in which there is no intention of lying, but which are produced because of a memory or other cognitive impairment. In order to understand more about this, they described a series of social encounters taken from a Nursing Home, in which one of the residents, Martha, reacted to the world around her. The start of this sequence of interactions concerns Martha and another resident overhearing staff discuss making coffee, but without realising that this is being prepared in the kitchen. Over time this initial misunderstanding develops into a series of stories in which Martha describes herself as a hostess and positions herself as a generous and kind person. Throughout this period Martha is concerned to establish who has been served coffee already and attempts to work out how to pour coffee from the pot. All of these interactions are guided by Martha’s version of “the truth” and as Martha has to accommodate new information so the nature of this “truth” continually shifts. Throughout, however, Martha’s version of reality places herself at the forefront of her story, as a caring and sensitive woman who is trying to do the right thing. Her version of the “truth” then functions to preserve her self-esteem.

Confabulation is often thought of as a symptom of dementia, and one that frequently causes family members a great deal of distress and upset. However, as Őrulv and Hydén describe the context within which Martha’s behaviour occurs, so it becomes clear that while Martha’s behaviour may reflect the fact that her cognitive difficulties make it hard for her to understand the world. In fact, her “ confabulations

” serves two key psychological needs: they help her to make sense out of what is happening to her without at the same time eroding her self-esteem. Thus it is preferable for Martha to see herself as a hostess who takes care to see that all her guests have been served, rather than as being one of many residents in a home. Similarly, it is preferable for her to think of the coffee pot as broken, rather than to think of herself as being unable to operate it. As Martha moulds the world that she experiences into a reality that she can live within, so she also tells stories of other occasions in her life when people have badly treated her. By recalling these examples of being taken advantage of, so we can begin to make sense of her ungrateful behaviour towards the other residents who resented her positioning herself as a hostess.

In this sense, confabulation can be understood as a sign of someone trying to do something positive—to grapple with their illness and to make sense out of their world. It tells us (and themselves) something about the sort of person they take themselves to be.

The Role of Carers in Preserving Self-Esteem

This need to preserve the self-esteem of the person living with dementia, and their vulnerability to feelings of being diminished, is something that those around them often feel instinctively. Consequently, many caregivers and families take great care to build a protective shell around the person, in which they are insulated from the emotional and psychological consequences of their cognitive deficits. This was made very clear to us a few years ago, when we organised a series of focus groups for the families of people living with dementia. We used these focus group meetings as an opportunity to draw on the expertise that the families had built up over many years of caring for their partner or their parents to find out what they thought would be the best way to involve families in an intervention we were developing.

What the families told us in each of the focus groups was the same message—their priority was to maintain the person’s emotional state. All of them described the importance of maintaining a sometimes precarious sense of equilibrium. There was a strong sense of an implicit understanding being present within couples and families about there being something wrong (one woman said her mother described “a memory problem”), but generally, this was not articulated directly out of a fear that it would be upsetting. At the same time, the person affected by dementia may profoundly resent not being able to take the lead role in some activities especially when these are associated with their identity, and this resentment was often openly articulated. Often this ended up with rows and arguments, tears and conflict.

Due to their personal knowledge of the person living with dementia, families had an intuitive understanding of what their loved one found most threatening about their dementia—in particular they were afraid of the implications of dementia for their identity. For Anne’s mother it was the fear that she might forget her husband, who had died twenty years before. Beatrice spoke of how her husband was terrified that he would become like his own mother, who had died with dementia, not knowing who he was. Charles told the focus group of his wife’s deeply held fears that she would be forced into a Nursing Home and forgotten about. David described how his mother had always been too proud a woman to acknowledge any illness or change. Almost all of the people who attended the focus groups knew instinctively how dementia threatened the self-esteem of their husband, mother, or wife and consequently how it was important to protect them against the thought of the sort of person they might become.

For each of these people, the focus of the care that they provided was to avoid difficult encounters with these threats to identity. They tried to manage the lives of their loved ones so that such painful encounters with reality could be avoided as much as possible—because they saw the crushing effect that this had on the person’s self-esteem. Consequently, they had each come up with different coping strategies that managed the threat to the identity of the person with dementia that their illness created and thus minimised their emotional distress. Allan, for instance, said that he took great care to preserve his wife’s identity—“I have little tricks to make sure that she still feels like the matriarch of the family. So for instance if I’m doing dinner, which she can’t do any more, then I make sure that she does the gravy so that she feels like she’s done something”. Others in the groups described doing similar things: blaming old age, poor eyesight or bad health rather than dementia when something was forgotten; patiently replying to the same question over and again without reminding their partner that they have asked this before; finding tactful ways to prompt or take over tasks; inventing excuses for using pubic transport rather than driving. Through all of these tactics, families find subtle ways of mitigating the threat that dementia poses to the identity of the person they are caring for—and in each case, the strategies were different, because the identity of the person was different. As one man told us “it’s a cliché, but as the saying goes, ‘once you’ve met one person with Alzheimer’s disease, you’ve met one person with Alzheimer’s disease’”.

Conclusion

Throughout this chapter, we have described how people living with dementia respond to the challenge of their illness by framing the world in a way that maintains their self-esteem. This may be through acts of avoidance, with the person perhaps doing less and less after their diagnosis, increasingly inhabiting an emotionally safe but more restrictive social world for fear of exposing their cognitive decline. It is also seen in the ways that people like Tom and Martha make sense out of their phenomenological world in a way that preserves their self-esteem, but which sits uncomfortably with reality.

We need to ask ourselves a simple question: why do people who are living with dementia go to such lengths to maintain their self-esteem even if it is at the risk of denying the reality of the world around them. We believe that the answer to this question is that self-esteem protects the self against the threats posed by dementia. It prevents the person experiencing the distress that would otherwise be engendered by a confrontation with their deterioration. In this way, the search for self-esteem serves the same function as the drive to create security through relationships. Both provide a vital psychological resource against an existential threat. We will now turn to a third psychological resource—one that our descriptions of Tom and Martha have hinted at—the need to create a world in which our lives are imbued with meaning and purpose.

References

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Bird, M., & Moniz-Cook, E. (2008). Challenging behaviour in dementia: A psychosocial approach to intervention. In R. Woods & L. Clare (Eds.), Handbook of the clinical psychology of ageing (pp. 571–594). Chichester: Willey.

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Sabat, S. R. (2006). Mind, meaning, and personhood in dementia: The effects of positioning. In J. C. Hughes, S. J. Louw, & S. R. Sabat (Eds.), Dementia: Mind, meaning, and the person (pp. 287–302). Oxford: Oxford University Press.

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Sabat, S. R. (2014). A bio-psycho-social approach to dementia. In M. Downs & B. Bowers (Eds.), Excellence in dementia care: Research into practice (pp. 107–121). Maidenhead: McGraw-Hill Education.

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Footnotes 1

https://www.bbc.co.uk/programmes/b00tw5xt.

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_6

6. Being the Same but Different: Creating Meaning from Dementia

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

In this chapter, we examine how people who are living with dementia balance the need to preserve their identity and self-esteem against a requirement to understand their dementia. Adjusting to dementia involves both cognitive and affective processes. It is something that is done with both the heart and the mind. In creating meaning from their dementia, people face a dilemma: whether to confront the threat posed by the diagnosis or, instead, push all knowledge of it out of their mind. Each course of action comes with risks: while it might sometimes be preferable not to think about dementia, this brings with it problems of long-term adjustment to the condition. However, while engaging with their dementia may be painful and distressing for people, an increasing number of people who are living with this condition are able to talk openly about their experiences and challenge the myths and stigma that abound in society.

Keywords

DementiaAlzheimer’s diseaseAwarenessAdjustmentMeaningAssimilationMetaphor

As we described in Chapter 2, dementia is a terminal illness that involves progressive decline and impairment caused by the neurological deterioration of most areas of the brain. It involves the gradual erosion of capacities that are the constituent parts of our identity. This includes the progressive loss of memory, erosion of language skills and difficulties in carrying out everyday tasks. The social consequences of this are that, for those affected by this condition, the process of dementia involves ever-increasing levels of dependency leading to eventual physical and mental decay up to the point of death. With increasing reliance on others comes the loss of independence and the threat of becoming an increasing burden on those we love and cherish the most.

In many ways it is understandable that people might want to turn away from their dementia; to look away from what their future has to hold for them. To acknowledge the existence of dementia is to run the risk of being overwhelmed by its emotional consequences. As we have seen when examining the case of Tom in the last chapter, many people with dementia struggle to acknowledge their dementia. For people like Tom, all knowledge of dementia needs to be pushed away, so much so that often the person cannot even bring themselves to mention the name of the illness.

At the same time, many other people who live with dementia are able to recognise their disabilities, acknowledge the impact of this on those around them and address a future of prolonged deterioration. In the last few years, people like Kate Swaffer or George Rook who are both living with dementia have written books about their experiences [1], use social media[1] or have joined together with others to advocate for their rights.[2] Many more manage to live meaningful lives and to bear their increased dependency with stoicism and fortitude. It remains possible for many, perhaps even most people with dementia to report that they have a good quality of life and to feel that their life is full of hope and meaning [2].

In this chapter we shall address why it is that there is such a wide variation in how people make sense of the existential threat that their dementia represents. Creating meaning from dementia involves, as we have seen finding a balance—on the one hand, the person has to create a version of the world that makes sense of as many of their experiences as possible; while on the other hand, they need to preserve their self-esteem. Only by finding a way of successfully balancing the one against the other will they be able to manage to hold onto an emotional equilibrium.

Dementia, Cognitive Impairment and Awareness

Until recently, the dominant viewpoint in dementia research was that the cognitive impairments caused by Alzheimer’s disease and other forms of dementia inevitably meant that people would lack insight or awareness into their condition. Indeed, for many clinicians, a lack of insight into a failing memory would be one of the signs that they looked for to help them to decide between a diagnosis of dementia rather than, for instance, depression. Thus we know, for instance, that one of the first indicators of Alzheimer’s is a loss of verbal fluency and that where the neurological impairment affects the frontal lobes of the brain then this impacts upon a person’s metacognitive capacity—their ability to be aware of their own thought processes. From this perspective there would be no reason to provide emotional or social support, let alone counselling or psychotherapy, to help people living with dementia adjust to their diagnosis. However, the belief that cognitive impairments per se would prevent people from developing awareness has been challenged in three different ways.

The first way in which conventional wisdom has been challenged is through the personal accounts of many people who are living with dementia and who have provided passionate, articulate and compelling stories of their experiences. Collectively this advocacy has been an enormously powerful force for change and indicates that for many people the cognitive impairments underlying the condition do not prevent them from talking about themselves as having dementia. Moreover, there is also evidence that people with even severe levels of cognitive impairment can still think and talk about what is happening to them, even to the point of being able to think about their own death. Beatrice Godwin and Hilary Waters (2009) invested a great deal of time and effort patiently building a relationship with twelve people living with advanced dementia in hospital wards, nursing homes and, in one case, a hospice [3]. They described how, if one listened empathically to their narratives, it was possible to identify that despite their advanced dementia, the people they spoke with were able to describe how they wanted to be looked after while they were dying. One incident suggested quite a sophisticated understanding not only of the reality of death but also how it was a central issue in their care. One of their participants who had a severe level of dementia and who was living in a nursing home described how she would sometimes tease staff by appearing to be dead, and then suddenly “waking up” to frighten them.

The second challenge to the conventional wisdom that a lack of awareness is solely caused by neurological impairment is the finding that some people continue to be aware of what is happening to them even though their dementia has worsened. This finding runs against the reassurance that is still sometimes given to families by health professionals, that although their relative may at present appear to be upset because they are aware of what is happening, as the illness deteriorates over the ensuing months then their awareness will reduce and their distress will dissipate. Thus, some studies show no apparent link between awareness and levels of impairment. Indeed, even in those studies that do show an association between impairment and insight, there are often a few cases where there has been an apparent development of awareness as the illness progresses [4]. In one quantitative study, almost 200 people with dementia were followed over a period of 18 months to chart the relationship between a person’s levels of awareness of their dementia and other aspects of their life [5]. While the level of awareness of participants generally worsened during the study, around a fifth of patients who were rated as having an intact level of awareness at baseline continued to have this eighteen months later on. In addition, “three patients showed an improvement in awareness at subsequent assessments … this supports the view that awareness is not simply a symptom of a disease that becomes progressively more severe and suggests that psychological and social factors contribute to the manifestation of disturbed awareness” (p. 13). Similar, findings have been reported by researchers who take a more in-depth, or qualitative approach to research. Thus when Linda Clare and her colleagues examined the awareness of people living with dementia that they had previously interviewed a year before [4], they found that “a small number of participants showed significant changes … in both directions” (p. 487).

The final challenge to the assumption that people who live with dementia inevitably lack awareness is the growing body of evidence that helps us to understand why, over time, some people begin to be more open about their illness. In the next part of this chapter, we will illustrate this using examples taken from psychotherapy research of people living with dementia that point to how some people can be helped to become more aware of their illness. More specifically, as a result of talking about their problems and fears, and from listening to others doing the same thing, some people are able to move from a position of warding off or pushing away the diagnosis to one in which they acknowledge its impact on them and begin to cope more adaptively.

In Chapter 7, we will describe how our laboratory-based research has also explored precisely this issue, by investigating whether the recall of information about dementia is affected by how threatening that information is to the self. Then, in Chapter 8 we will look at a study that we have carried out which shows that increasing psychological resources including self-esteem, social connectedness and meaning in life enables people who are living with dementia to remember more about their illness, regardless of the level of threat that this holds without, at the same time, making them more anxious or depressed.

A Little Knowledge Can Be a Dangerous Thing

We turn now to the clinical and research evidence base that relates to how we can help people to find meaning in their illness, a process that is sometimes described as “coming to terms” with the illness. Importantly, not everyone who is diagnosed with dementia needs to be able to talk about their illness. In the previous chapters, we have addressed some of the possible reasons why people might find it hard to talk about their illness, such as the absence of supportive social relationships or an insecure attachment style. However, whatever the reasons, for some people talking about dementia achieves little except to make them feel even more isolated. Indeed, the evidence base, while often confused and at times contradictory, does support the contention that, for some people, being more aware of dementia is psychologically distressing. For instance, while there is a somewhat confusing research picture, some studies do show a relationship between higher levels of awareness and higher levels of depression and anxiety [5, 6]. Where the person lacks the individual and social resources to engage with their dementia without becoming overwhelmed, then it is preferable for those around the person to provide the emotional and practical support they need, but for any shared awareness of change to be implicit, rather than being openly expressed.

A consistent research finding, however, is that low levels of awareness tends to be linked to a range of problems including psychiatric disturbances such as psychosis [7], deterioration in global functioning [6], a higher risk of stress in those caring for the person [8, 9], and poorer outcomes following an intervention [10].

Lack of Awareness as a Response to Dementia

An alternative to viewing a lack of awareness as a symptom of dementia is to understand that it may instead be a response to dementia. Just as we have described in Chapter 5 with reference to the work of Steven Sabat, we need to remember that people who are living with dementia continue to be semiotic beings; that is to say, they strive to make sense of the world, and use this understanding as a framework for their interactions and behaviours. However, where this understanding threatens to undermine the person’s identity, then they may draw on defence mechanisms that preserve their self-esteem and enable them to hold onto a sense of life as having meaning and purpose. This is comparable to the example of Martha who Őrulv and Hydén described as using confabulation to create a version of reality that did not threaten her identity. For some people, conscious acknowledgement of their dementia runs the risk of destabilising their internal psychological balance, thereby instilling a fear that they may lose their self-control [11]. Talking or even thinking about the changes that have occurred as a result of dementia can often be too frightening to put into words. The process of emotional regulation that is prompted by the existential threat of dementia necessitates the person balancing competing needs: to address these changes and thus to find meaning in life, while at the same time protecting the self from threat in order to not become emotionally overwhelmed.

A person’s capacity to make sense of the many different threats posed by their dementia will vary according to their level of psychological resources, and the type of threat to their identity that they are presented with. For some, it is well within their capability to be consistently clear about their dementia and to address the issues as they arise. Yet for others, this is more difficult, and they tend to avoid engaging with their dementia. Where their attention is drawn to their dementia, then this sets off a series of defences that prevent this threat from destabilising their psychological equilibrium. These defences can include distancing themselves from dementia, minimising its impact, or (as we shall explain in Chapter 7) selectively forgetting it. However, the greater the person’s psychological resources, then the less these reminders of dementia will be experienced as a threat, and their need for psychological defences will be reduced.

Awareness, or rather a lack of awareness, of dementia, can therefore act as a form of defence regulating or controlling the person’s emotional response to that threat [e.g. 11–14] and allowing the person to retain a level of psychological balance [15]. Awareness, then, is not a light that can be switched on or off, but rather it is more akin to a dimmer mechanism that can be turned up or down to either reveal or enshroud according to the psychological needs of the moment. However, while being less aware of dementia protects the person against psychological distress, as we have seen in the case of Tom, it can also lead to conflict and distress in the longer term.

How Do People Adjust to Dementia?

Several different theories have been put forward to explain how people living with dementia respond to knowledge of their illness. One of the best known of these was put forward by Linda Clare [13, 16, 17]. In her view, coping responses fall along a continuum ranging from self-maintaining responses that are aimed at preserving the pre-existing self-concept to self-adjusting responses that are aimed at integrating new experiences into a changing self-concept. Within her model of awareness, biological mechanisms were important, but the main factors that determined whether or not someone showed awareness of their illness were psychosocial factors and especially the person’s self-concept [16]. Importantly, for Clare, the central dynamic in participants’ accounts was the tension between attempts to protect the self from the threat of dementia, efforts to engage with the changing world, and addressing the challenge to integrate aspects of their experiences into their self concept.

Linda Clare’s ideas were based on a series of phenomenological studies exploring the impact of early-stage dementia. In one study [18] nine older couples were interviewed. They suggest a circular model of coping based around a dual-process model of grieving. Older couples moved from denial, avoidance and minimisation of problems into a gradual acceptance of these changes; an oscillating process of first pushing away and then accepting parts of the experience as well as focusing on what remains of the future. Importantly, the individual moves backwards and forwards between these two positions, at first approaching and then retreating from explicit awareness.

Being the Same but Different

As we have seen in Chapter 4, people who are living with dementia often create a version of reality that is consistent with their existing self-concept in order to maintain their self-esteem. Finding a way to create a sense of continuity in our self is a vital, psychological resource that buffers us against the impact of existential threats. However, a diagnosis of dementia often challenges the continuity of a person’s identity. The threat of a self-identity becoming dislocated or fractured permeates the accounts of many people who are living with dementia. One year after being diagnosed with Alzheimer’s disease James Thomas described his experience of dementia [19]: “Every few months I sense that another piece of me is missing. My life, my self … are falling apart. I can only think half thoughts now … not know who I am. Most people expect to die someday but who ever expected to lose their self first?”.

From the perspective of Terror Management Theory we would expect that in order to protect themselves against the threat of dementia, people who are living with dementia would go to great lengths to hold onto their established sense of self. Indeed, this is precisely what the research literature tells us happens. One study [20] looked at how people living with dementia talked or behaved in ways that suggested they still defined themselves in terms of their past self-identity, without apparently being aware of their present reality—something that they defined as “Behaviours from Past Self-Identities”. They found that over a third of the 35 people that they studied, all of whom had moderate levels of Alzheimer’s disease, behaved in this way. The researchers concluded that the reason for this was that these participants lacked memory for recent events—and thus had no option other than to draw upon past memories to fill the void in their identities. Our conclusion, however, is somewhat different: we would suggest that drawing on one’s past identity enables people to defend themselves against the threat of their dementia. In other words, people use their past identities precisely to avoid having to think about recent events.

At the same time, it is also clear that many people who are living with dementia manage to find an accommodation between their past and present realities. In a study [21], twenty-one people with Alzheimer’s disease were interviewed about their life story. From these accounts, it was clear that self-continuity and leading a meaningful life took centre stage in their experience of the here-and-now. Developing a life story in which the different elements, including their dementia, created a coherent whole was vital to these participants’ emotional well-being. For some people, developing a cohesive life story that spans past and present identities is not just a matter of remembering the past, but is also a creative act. For at least a small proportion of people, these past identities may not be based on real events, but instead appear either wholly or in part to be imaginary [22]. Selectively forgetting and creatively imagining alternative realities serves the existential function of identity protection. This enables people living with dementia to create stories in which they play a pivotal role as hero or survivor—and this, in turn, can help someone to make sense of the phenomenological experience of dementia. Roy’s story of flying in the jungle illustrates just this process of meaning making.

Roy: Dementia as a jungle

When one of us, RC, first began to run groups for people living with dementia, he was struck by how the group participants told so many stories—sometimes it felt as if this got in the way of the “real” work that he imagined the groups should be doing—talking to each other about their experiences of dementia. Over time, however, it became more evident that many of these stories actually carried a description about their dementia, hidden within them [23].

To take one example, Roy was a 74-year-old man who had a diagnosis of Alzheimer’s Disease and who had recently moved into the area as his family felt he could no longer care for himself. Instead, he was now being cared for by his stepdaughter, who had organised for him to have regular stays in respite care. Roy was one of seven people attending a group that R facilitated at a day hospital, the aim of which was to allow people to talk about how life was for them. Roy had missed the previous session of the group, as he had been staying for a week in a Nursing Home, and he had come straight to the day hospital from that home, with his suitcase packed, ready to return to stay at his stepdaughter’s home that afternoon.

During the session, Roy described how life sometimes seems to go in a cycle, and that he could draw on his past experiences to help him to manage new situations, thinking to himself “oh, I’ve done this before”. Louise, the group facilitator, asked him if he could think of a situation like this. Roy replied: Yes, there was a case, there was an example in Malaya, we had a job to do, and we couldn’t do it because of the situation of the country, the difficulty of getting through the jungle, thick jungle, high grass and things like that. And I spotted somebody nearby, and he was talking to somebody else and I went up to him and in fact he was talking about his airplane and what he was going to do at that particular time and so I went up to him and said ‘do you want a pilot?’ and he said ‘yes’ and that was it, although I didn’t realise it at the time.

And in fact I assisted in several situations where he had to fly the aircraft out of awkward situations and land it somewhere else where it was difficult to get out again. So I put him right on things like that. And I had it organised for a clearing of the jungle path where you were going to land and where we were already fixed at the time to make it safe, to at least making the whole area safe, to at least making the whole area safe for getting in and out of quickly. And the jungle of course grew while we were there to the point that we used oil and petrol and therefore we cleared it, and it came in very useful. And I was busy on that for about a year and a half approximately. It was one aircraft and it never let me down I must admit.

On first reading, this may seem like a straightforward account of an episode from Roy’s past life as a pilot. As such it may well provide Roy with a boost to his psychological resources: by recounting a time when he was part of a larger enterprise, playing an important role that others needed and valued, so this story is likely to boost Roy’s self-esteem and enhance his feeling of being connected to others. In a later chapter, we will explain why these are important psychological qualities.

Stories like this also enable people to have a stronger sense of self-continuity—after all, the point of telling the story is that for Roy it illustrates the way in which past experiences help him to manage problems that he encounters in the present. It is less clear is exactly how this might be the case—because when he is then pushed to explain this, so Roy continues to maintain that “situations that you get into often are very similar to those situations that occurred in Malaya”. At the same time Roy also knows that “at the moment, light aircraft of the type that you fly, they’re not very similar”. So in what way can it be the case that remembering stories like this from his past helped Roy in the present?

Well, one possibility might be that there was indeed something about Roy’s time flying a plane in the jungles of Malaya, carving landing strips out of the jungle, only to find them regrow and needing to be burnt out again—that there was some connection between this time and his present day life. Right at the start of his story, Roy prefaces it by remembering that there was a time when “we had a job to do, and we couldn’t do it because of the situation of the country”. It may be that this is the similarity to Roy’s present life—that once again he has a job to do, but can’t do it because of the situation. His current job is to get on with the business of his life, and he is indeed struggling to do this because of his situation. He can no longer live on his own, and instead, he needs to live with his stepdaughter for her to look after him. However, she can’t do this without having him regularly going into a Nursing Home, somewhere that he struggles to remember. At other times in the group, Roy had described how living with a severe loss of memory was a day-to-day struggle for him. It may well be, then, that while the story of his time in Malaya as a pilot was not practically useful to him—indeed he later says that, “nobody has any airplanes around here”—but that it is metaphorically useful for him. More specifically, the story may provide Roy with a way of making sense out of his experience of dementia. The feeling of searching after meaning, only to find it slipping away from him as he grasps it, feels a little like it did to him when he was in Malaya trying to negotiate a way through thick jungle and high grass which needs to be burnt down, but which keeps growing back.

In this way, the story of the jungle may, for Roy, have provided an important psychological resource—it may have helped him to find a meaning in life that would otherwise escape him. The story might be useful because it helps him to remember a time in life that was analogous to his current life—and a time of life when he had been a useful, productive and valuable member of a wider group, even though at times it was hard for him to know where he was and whether he would find safety again. The importance of this story might be that it provided him with the reassurance that if he persists, then he can ultimately find a way through.

There is a paradox at the heart of dementia care: while dementia represents, as we have argued, a profound existential threat, nevertheless for most people who are living with dementia, day-to-day life proceeds with awareness of the illness, if it exists at all, being pushed firmly into the background. Most people manage to find a way of defending themselves sufficiently against this threat to achieve some form of emotional balance. They know about dementia, but don’t allow this knowledge to overwhelm them. While they may initially have been deeply distressed at receiving the diagnosis, they manage over time to find some accommodation with it. As the illness continues, so they gradually adjust to greater and greater dependence, allowing themselves to be cared for, while holding onto dignity and self-respect. So how, then, do people achieve this emotional adjustment? This is the issue we will turn to next.

Assimilating Dementia into the Self

Some models of how people living with dementia adjust to their diagnosis, frame this primarily as a cognitive process, one in which changing how someone thinks should be the main focus for intervention. However, change quintessentially involves an interaction between the heart and the mind; between how people feel and how they talk about their feelings. One model of how people can come to terms with traumatic events in their lives is the Assimilation Model that was created by Bill Stiles and his colleagues to account for the changes that occurred within psychotherapy [24–29]. We have used this model to understand how people living with dementia adjust to their illness (e.g. 11, 14, 30–32], in which this process is broken down into three psychological tasks: emergence, finding distance and perspective, and recovery. We shall describe each in turn.

Emergence

At its extreme, the first stage of this process may involve material that is problematic for the self being pushed away or “warded off”. The presence of dementia is not recognised, and the person will avoid contact with reminders or cues that may trigger unwanted thoughts. For the problematic material to enter into awareness, the person has to allow dementia to enter their life, but to do so gradually so that it does not overwhelm them or unduly disturb their internal psychological equilibrium. This involves putting a name to their dementia. Often before they can do this, dementia can only be referred to indirectly such as through the use of euphemisms such as “it” or “that thing that I have”, or by using metaphors or stories to describe different aspects of their feelings. It is as if the person cannot bring themselves to mention the words “dementia” or “Alzheimer’s Disease”.

For some people, although talking about and exploring their dementia experiences is (potentially) therapeutic, it may also present them with a dilemma as it increases their level of distress, which for many will feel as if they are losing control of themselves and their emotional status quo. Should they continue to talk about dementia and run the risk of losing control of their emotions? Or disengage entirely from their dementia but risk losing control of their life? This ‘ fear-of-loss-of-control

’ may take the form of worrying that if they continue to talk about their dementia, then they will risk unbalancing their emotional equilibrium, diminishing their self-esteem or compromising significant relationships in their life in some way. One person, Mr. E, who attended a group that RC facilitated spoke about it in this way [33]:

I find what we’re doing now, it brings all memories to me, so and being around listening to you all talking. … I don’t think a memory loss and I don’t, talking, and being around each other. I’m not being funny about that. I’m trying to make a point that I’d rather be at home doing what I need to do and want to do. And this is why I really don’t want to talk about that you know, I mean I’m sure it’s being selfish but, it’s just the way I feel about it. I don’t really want to be here… I just want to be. I’ve got lots of things I’d like to do, and er. Well, I can’t think about coming here, it just brings it all back.

As we have described in the case of Roy, some people manage to find a way to talk about their dementia indirectly by using metaphors. Still others are sometimes able to look back and to reflect on how they have been able to move away from their initial fears about losing control. Thus in one study [34] we described how one participant, Len, looked back at his initial fears, immediately after the diagnosis. Len’s primary concern at that time was that other people might think he was going mad. In order to keep control he felt that he could not acknowledge his dementia:

I think that if people know, they understand, but if you hide it as I did, first going, they get frustrated with you. So if I was advising someone, if they found themselves in the situation I found myself in, I think you’ve got to be open with people and they may understand instead of thinking ‘oh that silly old fool is losing his marbles’ … I mean I tried to cover up, which I suppose is a natural thing to do. Yeah, you try to cover up and swear blind that you haven’t been told, you know, what you have been told, and eventually you accept the reality that you’re not right. And I think that took a long time for me to recognise it, but I’m glad that it happened, you know I’m glad that it was brought to people’s attention.

Finding Distance and Perspective

Once they have recognised and named their dementia, the person faces a second task, that of gaining distance and perspective. This task involves moving on from being trapped within the feelings that dementia generates to stepping back and talking about those feelings with others. This is a subtle but important distinction. There are many different ways in which people do this. Some people joke about their mistakes, others reflect on their life as a whole and remind themselves that in some ways they are fortunate, while others take comfort in finding out that they are not alone.

Recovery

Recovery is a controversial term in dementia care. After all, people do not recover from dementia. It is progressive and incurable. However, we use recovery differently, more in the sense that it is widely used within mental health services, referring to the person finding some solutions, or partial solutions, for their problems. For instance, once you have recognised that you have a problem with learning new material, then you may make use of a diary or a calendar to remind yourself of different things. In this way, recovery also means taking responsibility for oneself to the point where the person will be able to allow themselves to be appropriately dependent; to accept the help that is offered without letting resentment get in the way.

The case of Robert illustrates how some people can move from warding off to recovery.

Robert: Finding a way of being the same but different [33]

Robert was a 76-year-old retired solicitor who lived with his wife and had received a diagnosis of dementia of the Alzheimer’s type. He attended a therapy group for people living with dementia. In the first week, Robert tended to ignore or distance himself from his dementia, for instance when he talked about attending a luncheon club for businessmen he described how “half of them have got Alzheimer’s or something near”.

The next session in which Robert referred to his illness occurred in the fourth week. At the start of the session, a man in the group that Robert had allied himself with, described how when people knew he had Alzheimer’s disease, then they acted in a different way to him. Robert challenged him about this, saying “you keep saying you have Alzheimer’s, has that been formally diagnosed, because it’s not the same thing as memory loss, you know?” Later in the same session he continued to question the use of the term by other group participants: “Now there’s a premise here that I just don’t agree with. The way you’re talking, you sound as though you’ve accepted the fact that you’ve got Alzheimer’s. Now I don’t think anyone in this room has got Alzheimer’s”.

Within the context of the group, this challenge acted as something of a catalyst. One-by-one other members of the group described themselves as having Alzheimer’s disease and talked for the first time about their feelings in relation to it. Julie said that she didn’t answer “because I was ashamed really”; Janet said “I’ve always come out with it”; to which Chris replied that he thought that “shameful is perhaps the wrong word, it’s just that I wouldn’t want to publicise it”; Walter agreed “it’s unfortunate that you’ve got it”. Finally, Judith talked about her fears of dementia and what the future holds for her (see quotation at the start of Chapter 4).

Throughout this discussion, Robert was quietly listening, checking whether Judith was worried about the process of dying, or about something else. We know this because he would occasionally interrupt Judith, asking for clarification of what she had said. However, the conversation seems to have had an impact on Robert, as at the start of the following week’s session, he pulled a piece of paper from his pocket on which he had made notes and angrily began to read them aloud. He complained that in the previous week he felt the group had made a crucial mistake, that it had become confused and equated having a poor memory with a lack of intelligence. Robert went onto say:

Now the problem with Alzheimer’s as it is affects me is that I have no problems with retrieving the information in the long term … even the most intelligent set of people, who can still do a crossword puzzle etc can still have Alzheimer’s. It’s got nothing to do with intelligence, it’s short-term memory only.

This change in Robert’s tone marked an important shift in the way in which he described his dementia. In terms of the Assimilation Model, he was in the emergence phase, as he was still inclined to push his Alzheimer’s disease away, but for the first time, he had acknowledged that he was affected by Alzheimer’s disease. However, Robert’s description of his dementia continued to evolve: in the seventh week he once again referred directly to his dementia, but rather than the angry, almost confrontational tone of week five, Robert now made a joke of his dementia:

Can I tell you something that’s happened to me in this last week? I’ve had a CT scan… I got the results back yesterday and it said that my brain had shrunk very, very slightly in the cavity, which is fairly symptomatic of the onset of Alzheimer’s … It’s still twice as big as everyone else’s so it’s quite alright.

This seemed to be a clear indication of Robert using humour as a way of gaining distance and perspective on his dementia. He had been able to move from seeing Alzheimer’s disease as something that happened to other people to a position where he was able to make a joke about his brain having shrunk and that this was “symptomatic” of the illness. He was able to name Alzheimer’s disease, but without being emotionally overwhelmed by this. As is often the case in psychotherapy, it’s difficult to be certain about what had helped Robert to talk in such a different way. However, there are a number of clues about how dementia came to have a new meaning for him: first of all, as Robert himself reflected in the penultimate session, dementia no longer seemed as threatening to him:

I don’t see the problem now, it frightened me, the problem of declining memory, until I came here, and now I’m not frightened. It frightened me because I thought, well, I’m going mad, I’m going crazy. What am I going to be like in another five years? But now I realize that everybody is getting this problem.

So what was it that helped Robert to realise that he wasn’t going mad? He himself related this to the support that the group had provided saying “I’ve got a great deal of moral uplift by coming here, meeting you, listening to the way you do it”. The most likely explanation seems to be that it had something to do with listening to Julie, Janet, Chris, and Walter describing their sense of shame or embarrassment about having dementia and to Judith describe her fears for the future. This conversation seems to have spoken to Robert at a deep level—as it is in the session immediately after this that he acknowledged for the first time that he had Alzheimer’s disease, and angrily asserted that a poor short-term memory shouldn’t be equated with being stupid. Importantly in his reflection in week nine, his description of overcoming his worries about what he might be like in five years time almost exactly mirrors Judith’s comments about her fears for what she might become. As Robert remarked, “once I’ve made my mind up about that [being forgetful doesn’t mean you’re stupid] I don’t get depressed by it”.

Conclusion

In this chapter we have looked at the third, key psychological resource that protects people who are living with dementia from the emotional disturbance that engagement with their diagnosis would otherwise bring—that of seeing life as being meaningful. In creating meaning from their dementia people face a dilemma: whether to confront the threat posed by the diagnosis or instead push all knowledge out of their mind. Each course of action comes with risks: while it might sometimes be preferable not to think about dementia, this brings with it problems of long-term adjustment to the condition; however for many people, engaging with their dementia is painful and distressing.

Up until this point, many of our arguments have been speculative. We have argued that the most plausible reasons for many of the research findings and clinical experiences that we have described are that they relate to existential concerns. We have also asserted that Terror Management Theory provides a meaningful new way of looking at these phenomena. In the next two chapters, however, we will turn to our laboratory-based work that provides a direct test of some of our claims about how people who are living with dementia are able to protect themselves from the threat. In Chapter 7 we will describe how the most threatening information about dementia that relates to people directly is selectively forgotten. In Chapter 8 we will then show that by increasing a person’s psychological resources of self-esteem, social connectedness, and meaning in life, so we can improve people’s ability to recall this threatening information.

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Footnotes

1

https://georgerook51.wordpress.com/.

2

https://www.dasninternational.org/.

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_7

7. Defending Against the Threat of Dementia

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

This chapter continues our exploration of dementia as an existential threat by focusing on one way by which we protect ourselves from distress when we encounter reminders of dementia in our everyday lives. The specific coping mechanism we will discuss is known as mnemic neglect. This is a self-protective memory bias that shields us from being consciously aware of information about our self that is threatening. We will outline some of the research from social psychology on mnemic neglect before describing our own research that extends these findings into a clinical domain. This programme of studies shows that older people without dementia, as well as those who are living with dementia, both selectively forget information about the condition that threatens their sense of self. This indicates that the same self-protective strategies are at play in people with and without dementia. We conclude by discussing the therapeutic implications of these findings.

Keywords

DementiaMnemic neglectRepressionProtectiveMemoryAwareness

Dementia as a Threat

So far in this book, we have gradually built up our argument that dementia needs to be understood as representing a profound threat to self. In doing so, we have drawn on the significant body of research that has developed within social psychology over the last thirty years on Terror Management Theory. Terror Management Theory argues that a series of psychological mechanisms help us to deal with knowledge of our own mortality and other threats to our self-identity. These defences involve both behavioural and intrapsychic strategies. For instance, if we listen to a news appeal requesting aid for the victims of famine, we can either turn it off, make a donation, or volunteer our time to help out. Taking any one of these options could be thought of as using a behavioural strategy to help us to feel better and less distressed. Alternatively, there are mental processes that we may not always be aware of which might also help to remove our distress, such as our attention switching unconsciously to another subject so that we do not register what is being said. This would be an example of an intrapsychic strategy. It is through these types of strategies that we are able to keep at bay the anxiety and distress that would otherwise eat away at us [1]. In this chapter we will set out some of our research which explores the sorts of intrapsychic defences that help to protect people living with dementia against the psychological threat that dementia represents. When they are working well, these defences help to protect the person against the anxiety and distress that would otherwise occur as a result of being reminded about their dementia.

We have argued that people who are living with dementia continually encounter reminders of their illness. For instance, they find themselves having to rely on other people for help with everyday tasks, or they forget names and may stumble over words. Cumulatively, these changes constitute an existential threat as they denote a loss of independence, a fractured identity, a lack of connection to other people in their life, and finally, they presage death. Yet, how people respond to such threats varies and depends on a number of different factors. For instance, where someone has a rich and varied life, one that continues to be meaningful, where they continue to be surrounded by people and things they love, they will be more likely to face the threats posed by their illness with a degree of equanimity. If, on the other hand, the close relationships that do exist are fractious and not supportive, and they feel that their dementia is robbing them of their primary roles in life, then it will be much harder for them to face their dementia directly and make the necessary adaptations.

In the previous chapters we have set out our belief that to understand how dementia affects people differently, we need to understand not only the neurological impact of the disease but also the different ways in which people respond to the threat posed by this most feared diagnosis.

In this chapter, we present a series of connected studies that we have carried out over the past few years with our colleagues Emily Dodd and Sanda Ismail at the University of the West of England along with Constantine Sedikides and Tim Wildschut at the University of Southampton. These studies are closely based on research conducted by Constantine and Tim and others with healthy adults and draw upon many key constructs from the field of social psychology.

While much of the research we will draw upon in this chapter comes from tightly controlled experiments, we believe it has important implications for the lives of people living with dementia as well as for their families. More specifically, this type of research enables us to isolate and then to manipulate specific psychological factors, such as level of threat, which in turn allows us to test hypotheses about how these factors interact. However, before we examine these studies, it is necessary to draw attention to an important caveat. Although we shall be referring to threatening and non-threatening stimuli, we are not referring to the type of severe threat associated with traumatic memories. Such memories are beyond the bounds of what we are talking about in this chapter and are processed in an entirely different way to the type of threat that we describe here [2].

Self-Protective Memory

As we outlined in Chapter 4, a substantial body of psychological research has accumulated over the previous thirty years about how humans process information that represents a threat to our identity. One crucial aspect of this framework that we will turn to shortly is the mnemic neglect model. In essence, this is the idea that the mind has evolved in such a way as to have internal mechanisms that treat information and memories that threaten a person’s identity in an entirely different way to non-threatening ones. In other words, self-threatening information is mentally processed in such a way as to protect the psychological integrity of the individual concerned. However, before we can discuss this research in more depth, we need to think about how memories work.

The study of how memory works is a cornerstone of psychology, and consequently, there is a long and extensive history of research into all forms of memory. There are of course many different types of memory. Broadly speaking we talk about short-term and long-term memory. One of us, GC, has spent much of his career focusing on short-term memory, now referred to as working memory [3]. Although the precise way in which working and long-term memories relate to each other is still a matter of debate, generally speaking, these systems work together seamlessly to enable us to lead the lives that we do. The research work that we will concentrate on here homes in on a particular type of long-term memory, that of autobiographical memory. These are memories that combine information about a specific episode in our life (episodic memory) with knowledge about our selves (autobiographical knowledge) [4]. Autobiographical memories are multifaceted representations of our past with ourselves as the leading actor.

One of the many things to come out of the research into memory is that people tend to be able to recall negative memories more accurately than positive ones [5]. However, this is not the case for autobiographical memories. Instead, the body of evidence suggests the opposite, with poorer recall of adverse events in a person’s life [6]. Some explanations have been proffered to account for this. One argument is that people generally experience a higher proportion of positive life events and, as such, there is a stronger and denser associative network associated with such memories, and so it is easier to bring these to mind [7]. In other words, with repeated exposure, items in memory become linked together, and so thinking about one component will automatically activate the rest of the items connected to this memory.

However, the picture is far from clear. In an attempt to elucidate some of these issues, Constantine Sedikides and his colleagues conducted a series of experimental studies that aimed to shed light on how material deemed a threat to self was processed. From these experiments, they developed a psychological model of how memory failures—such as forgetfulness—could actually have a beneficial effect. Under some circumstances, people selectively forgot feedback about themselves that was threatening to their sense of self. They termed this phenomenon the mnemic neglect effect.

Mnemic Neglect

The mnemic neglect effect acts to protect a person’s self-concept, the qualities and attributes that define us as human beings. Most people have a self-concept that is generally positive, with qualities that are recognised as valuable and worthwhile within the community in which they live. This enables them to see themselves as having a position or status within society and to have certain core qualities that are central to their self. For instance, a person may see themselves as caring and morally upstanding [8]. Their self-concept is, in many ways, a frame of reference through which they view their own actions and those of other people. It develops over time, as an internalisation of their broader view of their world, specifically the cultural worldview that we described in Chapter 3.

Most of us see ourselves as essentially unchanged over time. The person we take ourselves to be now is, broadly speaking, the person we have always been. In other words, our self-concept endures over time. However, the psychological mechanisms that allow for this continuity are complex and mostly hidden [9]. One of the ways by which we preserve a positive self-concept is to protect ourselves against negative feedback from others [10]. Mnemic neglect is one such way of self-protection.

The clearest way to see mnemic neglect in operation is when someone receives mixed feedback. In real life, we can all bring to mind such situations quite readily. It is those situations where something positive might be said only to be followed by a, “but ….” For example, think back to when you submitted a piece of work, eagerly awaiting feedback. On receiving the feedback, all looks great as you read, “This was a good piece of work… liked your ideas…”, and so on. However, you read on only to find with much vexation the word “but” followed by ways your work could be improved. The first statement is a positive followed closely on the heels by a negative. So how does the mind process such information? How much of it will be remembered?

Importantly, then, feedback can be either positive or negative in nature and can refer either to aspects of one’s character that are central to the self-concept or to less critical aspects of the self that are primarily peripheral to how people see themselves. An example of a central characteristic would be trustworthiness. Most people would see this as essential and highly descriptive of who they are as a person. By contrast, seeing oneself as uncomplaining is generally thought of as being peripheral to the self-concept of most people. There is a final dimension along which feedback can vary: it could be about you or it could be aimed at someone else. Feedback that is directed at me is, by definition, going to threaten my self-concept in a way that feedback concerning a stranger will not.

With this in mind, we can distinguish four types of feedback: (1) feedback that is negative, about oneself, and reflects central characteristics (self-threatening feedback); (2) feedback that is positive, about oneself, and reflects central traits (self-affirming feedback); (3) feedback that is either negative or positive, reflecting central traits, but is about someone else (other-relevant feedback); and (4) feedback that is either negative or positive, either about oneself or another, but reflecting peripheral traits (tangential feedback).

So how do all of these ideas relate to real life? Well, imagine that you receive feedback about your performance at work from your line manager. If that feedback is positive and affirms your belief in yourself as a hard-working employee, then you are likely to see it as fitting in with how you view yourself. It is consistent with many other autobiographical memories you have, and so you integrate it into what you already know about yourself [11]. In cognitive terms, we actively encode it and process it at a deep level. Because of this, we are better able to recall this information.

If, however, we are faced with feedback that is negative and central—for instance, you are told that you are not up to the job in some way—then the chances are that while you may not ignore it completely, you may instead find a way of brushing it off in some way. Perhaps you attribute it to not feeling well over the past week and so promise yourself that you will do better next time around. The mental processing of this feedback will take place at a more superficial level [12]. We tend to associate deep processing of information with active attempts to make connections between the material presented and that which we already know. This linking and embedding of information leads to improved recall further down the line. With shallow processing, these active links and embellishments do not take place. In the case of self-threatening feedback, no connection is made between it and one’s own stored knowledge about oneself [11]. In terms of other-relevant feedback, the outcome will be the same, albeit to a lesser extent. This is because even though it refers to someone else, the material does relate to important traits. Self-affirming feedback, on the other hand, is processed at a much deeper level whereby it is elaborated upon and integrated into existing knowledge about oneself. With tangential feedback, regardless of whether this is positive or negative, the processing is again shallow as it reflects relatively unimportant aspects of the self.

The mnemic neglect model, then, suggests that people will be better at recalling feedback about themselves that is central and positive—self-affirming, in other words—than feedback which is central and negative, and so self-threatening. This occurs because we tend to lead lives where, on the whole, things tick along in such a way that our sense of who we are gently becomes reinforced. However, there will be times when our self-concept is challenged or threatened. At such times we are faced with a dilemma: to continue to see ourselves as the same person that we have always been, or to reconsider our self-concept and instead think of ourselves in a harsher, more negative light. When faced with such a threat to our self-concept, the mnemic neglect defence mechanism acts to bias us towards continuity of self. This happens because there is a strong tendency to selectively forget negative, threatening feedback. In other words, mnemic neglect acts to protect the self against threats.

But what evidence do we have that this actually happens and how does it relate to people living with dementia? We will now describe how this model has been tested empirically, first with people who do not have dementia, then switching to our own work on how people living with dementia use precisely the same processes to reduce the threat to self that is associated with their illness.

Empirical Evidence for the Mnemic Neglect Effect

The evidence for the mnemic neglect effect comes from a series of research studies that use a standardised procedure. For instance, Sedikides and his colleagues presented participants with statements of feedback about their behaviour. Half of the people who took part in their study were told to imagine the feedback related to them, while the remainder were told it referred to another person, typically someone called “Chris”.[1] The behaviours varied on two levels; first according to whether they were positive or negative, and secondly whether they were central or peripheral. For instance, if the feedback stated they were a “kind” person, this would be an example of a positive behaviour that was central to that person’s sense of self; if the feedback implied they were “unkind”, then this would be negative and central. Similarly, feedback about being “modest” would be seen as being positive and peripheral, whereas “immodest” would be negative and peripheral.

After being presented with such statements, participants were then given an unexpected task and were asked to recall as many of the statements as they could. When the statements had been negative, central to identity, and about the person taking part in the study—self-threatening—then participants’ recall was worse when compared to the other conditions, including when precisely the same statements were directed at the fictional “Chris”—other-relevant. Moreover, memory for central negative behaviour was worse than for negative and peripheral (tangential) feedback. This is evidence for the mnemic neglect effect [13]. This finding is robust in that it has been replicated time and again, and has been found in many different situations.

In a further test of this model, Sedikides and colleagues drew upon self-affirmation theory. This theory describes how we respond to personal threat by upholding the integrity of our self [14]. They followed up on their previous body of empirical studies by devising a procedure where participants received feedback on their performance of a test of creativity. This feedback was manipulated such that some participants received extremely positive praise on their performance, whereas others were informed that they were not at all creative. Although participants thought that the feedback was related to their personality, in fact the type of feedback they received was decided at random. This was then followed by the standard paradigm for testing whether mnemic neglect occurred; participants were presented with statements concerning a range of personal qualities and then asked to recall them.

Again, the findings illustrated evidence of mnemic neglect. This occurred for those who received negative feedback regarding their performance on the test of creativity before being asked to recall the statements. This feedback could be described as self-diminishing rather than self-boosting. The explanation here is that, after receiving feedback that undermined their belief in their abilities, mnemic neglect would protect them against taking in any further self-threatening information, and consequently, participants would recall fewer self-directed negative statements.

In contrast, for those who had been given feedback on the creativity task that was positive and, therefore, self-boosting, there was no evidence that they treated negative information any differently from positive. In line with the self-affirmation argument, they did not feel the need to protect themselves against negative feedback after their confidence in their core beliefs had been boosted. The upshot of this, and one that we will later argue has important therapeutic implications, is that boosting the self before providing feedback undercuts a person’s need to protect themselves against the threatening information. This self-boosting feedback removes the need for mnemic neglect.

Benefits of Mnemic Neglect

Having seen evidence for the mnemic neglect effect, it is perhaps time to consider why it is beneficial. What advantages are there to this tendency to forget negative feedback about aspects of our life that are most important to us? Why did this self-protective mechanism develop? Later in the chapter, we will discuss our own investigations extending this research into the clinical field of dementia research, but for the time being, we shall stick with looking at people who do not have a diagnosis of dementia.

An obvious reason why the mnemic neglect effect occurs is that, by protecting the self against threat, it enhances psychological well-being. For one thing, it helps people feel more optimistic about their lives. Similarly, the mnemic neglect effect also helps people by increasing psychological resilience. They seem to be protected against the impacts of threat, reducing the likelihood people will feel depressed, anxious, or hostile [15].

A second, beneficial consequence of mnemic neglect is that it also seems to offer a route to self-improvement. Sedikides and colleagues went on to look at how beliefs about personality characteristics influence whether or not the mnemic neglect effect occurs. Some participants were told that their personality characteristics were something that was not open to change, that they were fixed, whereas others were told that these characteristics were, in fact, modifiable [16]. The standard mnemic neglect effect procedure was then adopted.

The reasoning here was that on receiving negative feedback about apparently fixed traits, a person would believe there was nothing they could do to change the situation, and consequently, this negative feedback would be especially threatening. Sedikides and his colleagues predicted that recall under these conditions would be poor. By contrast, for those people who thought the negative feedback concerned traits that could be modified, the level of threat would be significantly reduced, and hence the feedback would be processed at a deeper level and, as a result, would be better recalled [17].

Again, the results of the study confirmed the predictions that we tend to forget negative information about aspects of our character that are fixed. On the other hand, we are responsive to critical feedback about characteristics that can be modified. There are times when we need to be brutally honest with ourselves. We do need to listen to what people tell us, even if this is painful. Potentially threatening feedback can be recalled and acted upon if the person is motivated to change, if it is provided by someone the person feels close to, or if a person believes that change is possible [16, 18]. We will return to this issue in Chapter 8 where we will look at how people living with dementia can recall more information about their illness even when this is threatening.

Before we leave this general consideration of the mnemic neglect effect, we want to make two final points. First of all, there is a difference between recall and recognition. Recall describes the action of reproducing material a person has been exposed to. Typically, in Psychology, we present individuals with a list of words and then ask them to recall as many of them as they can immediately afterwards, sometimes after a slight delay. Recognition occurs when someone is able to correctly indicate that the item they have been presented with has been shown to them previously. Again, a test might be to ask people to identify words they had seen before when they are presented with a list that also contains new items. We might describe recall as requiring a search process followed by a decision process. Recognition only involved the decision process [19]. Because of that, it is less demanding and less open to error. This process of recognition constitutes a synthesis of recollection and familiarity. In other words, the item to be recognised is available in someone’s memory and they experience a sense that they have seen that item before.

On the whole, people have better recognition memory when compared to recall memory. However, just because a person cannot explicitly recall the details of any feedback they have received, we cannot conclude that this information is lost and no longer present in their brain [20, 21].

The mnemic neglect effect is evident during recall but not recognition. In other words, although self-threatening material cannot be directly retrieved and recalled, it is still there and accessible in other forms of memory. What this suggests is that although people may not be conscious of having heard information that is threatening to their identity, and as a consequence not able to consciously recall it, nonetheless they are still unconsciously aware of that threat as evidenced by the fact that they are able to recognise it just as well as any other feedback they have received.

The second point we want to make is that there is nothing new about mnemic neglect in psychological terms. The finding that we tend to forget distressing, self-threatening feedback was clear to psychotherapists since Freud, as well as to cognitive psychologists. Both groups thought of it as repression, but while the former described this as a defence mechanism, the latter referred to a process of inhibition [22]. Regardless of the psychological approach, we know that information is lost from the mind if we do not actively encode it. In fact, this is an efficient and effective mechanism. We also know that we can purposefully forget information [23], a successful way of coping with negative memories [24]. The concept of mnemic neglect allows us to link this selective forgetfulness with threats to identity, and so provides a methodology for systematically manipulating and measuring these variables and their outcomes.

The Mnemic Neglect Effect and Dementia

We will now focus attention on our research. Our aim was to see if the mnemic neglect effect was also apparent when people living with dementia were asked to remember information about their condition. Throughout this book, we have argued that dementia represents a threat to self-concept, something that in principle should trigger the mnemic neglect effect. At the same time, we recognise that because dementia involves profound changes to cognitive functioning, this may in fact reduce or eliminate the mnemic neglect effect entirely. Consequently, we cannot automatically assume that people with a diagnosis of one of the various forms of dementia will automatically show the mnemic neglect effect, or more importantly that they will necessarily show it for information related to dementia.

For this reason, we have now carried out two studies to see if information about dementia is subject to the mnemic neglect effect. These studies have included both people with dementia and others without the condition. In this work, we have worked closely with a number of colleagues, most importantly Emily Dodd, a research trials manager at the University of the West of England, and Constantine Sedikides and Tim Wildschut in the Centre for Self and Identity at the University of Southampton.

Our first study set out to test the hypothesis that mnemic neglect would limit the recall of the most threatening information relating to dementia and have no effect on the less threatening information. We reasoned that dementia-related information might be a potent source of self-threat to people who do not have dementia. As we have described in Chapter 3, older people tend to be more fearful of dementia than younger generations. This makes sense because dementia becomes more of an immediate threat the older we are. Consequently, we hypothesised that older people would be more likely to display the mnemic neglect effect for dementia-related information than would younger people.

Before we could test this hypothesis out, we needed to identify which information about dementia people found the most threatening. We reasoned that some aspects of dementia would be more threatening than others. We asked over 280 staff and students at the University of the West of England to rate 64 statements about dementia along two dimensions: how characteristic they thought these statements were of dementia, and how threatening they were to well-being. All of the statements were taken from self-help leaflets designed for people with dementia written either by the Alzheimer’s Society or by the National Health Service. This meant we could be sure the statements were both scientifically accurate and that they represented the types of information about dementia that people might be expected to come across during their daily lives.

We then combined the two different ratings of each statement into an overall score, one that reflected the extent to which the statements were seen as being specific to dementia and the extent to which they emphasised serious consequences in terms of a person’s well-being. From the 64 statements, we selected the twelve most threatening and the twelve least threatening.

The next stage of our research followed as closely as possible the methodologies that Constantine and Tim had previously developed. We recruited 70 people of different ages. We divided participants into two roughly equal-sized groups according to age: either over 50 or under 50. Importantly, none of our participants had dementia.

In the study itself, all of the participants were asked to recall a randomised list of the 12 highly negative and 12 less negative dementia-related statements that were read out to them. Half of the participants, regardless of their age, had the statements read to them as if they referred directly to themselves, while the other half had them read as if they referred to a hypothetical person called Chris. An example of one of the highly negative statements that referred to the self was, “As the illness gets worse, so you will increasingly come to rely on others”, while a low-negativity statement was, “In the illness proteins can gradually build-up inside your brain”. By contrast, those participants who were presented with material as if it was about someone else were asked to remember, “As the illness gets worse, so Chris will increasingly come to rely on others”, and, “In the illness proteins can gradually build-up inside Chris’ brain”. The only thing that we changed was the substitution of the word “Chris” for “your” or “you”.

What we found confirmed our hypothesis that there was an interaction between the age of participants and whether or not the mnemic neglect effect manifested. For the younger group, there was no statistical difference in their recall. In other words, they were just as able to remember statements about dementia regardless either of the level of negativity or the person that the statements referred to. For older participants, we found a very different set of results. For the low negativity statements, those participants aged over 50 were just like their younger equivalents, showing no difference between recall of statements relating to Chris or to themselves. However, when it came to the more threatening information, they were less able to remember highly negative statements when these were about themselves than when they were about Chris.

So, what does this tell us? It suggests that recall of information about dementia can be affected by mnemic neglect. Older people are less able to remember the most threatening or negative information about dementia when it relates to them compared to when it refers to someone else. So, in the case of older adults, when it comes to thinking about how the symptoms of dementia may affect them, the self-protective mechanism of mnemic neglect makes sure that such information is pushed out of their conscious mind. We believed that for older people this was because highly threatening statements were too close for comfort. They were too much of a threat to self, so they tended to be less well recalled. For younger people, dementia is too distant a proposition to worry about, so their recall was equally good for all of the statements, regardless of how negative they were.

Importantly, public health campaigns in the UK and elsewhere target their messages about dementia risk reduction on just the same groups of over 50s as took part in our study. Often they set out to encourage people to change their behaviour—exercising more, modifying one’s diet—by informing them about their risk of developing dementia. Our findings suggest that these health promotion campaigns would be better advised to make sure that their messages about changing behaviour, improving diet, and increasing exercise was not written in such a way that the material directly threatens the reader’s sense of self, but rather written such that it refers to someone else. In doing so, one is ensuring the information is more likely to be recalled.

While this study was interesting, it does not necessarily mean that people who are living with dementia would also experience mnemic neglect for dementia-related information. It is possible that the memory deficits and other cognitive changes that occur as a result of dementia would somehow eliminate this selective forgetting. To find this out, we repeated the same procedure, but this time with people who had a diagnosis of dementia. We recruited 62 individuals all of whom had a diagnosis of either Alzheimer’s disease, vascular, or mixed dementia.[2] All of our participants had comparatively mild levels of dementia and had been diagnosed relatively recently. We screened out everyone who had a significant history of premorbid psychiatric problems or who scored high on measures of anxiety and/or depression in order to reduce the likelihood that they would feel upset as the result of taking part in the experiment.

Once again, all of the participants were presented with a range of statements concerning dementia that varied in negativity. Half of the participants were asked to imagine the statements as explicitly relating to them, while the other half were asked to imagine they referred to Chris. After being asked to recall as many of the statements as they could, participants were given a recognition task consisting of all of the statements they had heard as well as an equal number of new statements.

Once again we found that there was substantial evidence that the mnemic neglect effect occurred. In other words, a group made up solely of people with dementia showed selective forgetting for self-threatening dementia-related statements as evidenced by lower recall scores. Similarly, when looking at recognition memory, evidence for any selective bias was absent, again replicating the findings from the healthy adults. This indicated that, although there was evidence of a self-protective bias affecting the statements people consciously recalled, all items had been encoded sufficiently to enable recognition to take place. This meant that it was not the case that the participants had merely not heard the more negative statements that related to themselves. Instead, they had heard them, but had simply not processed them as thoroughly as the control group had done.

This pattern of findings mirrored almost exactly what we had seen previously with older adults without dementia and again shows that a self-protective memory bias takes place. There were, however, two significant differences here. First of all, the overall number of statements that the dementia participants recalled was fewer than participants who did not have dementia. This was only to be expected as the most characteristic symptom of dementia is a deficit in memory. However, the second difference did surprise us. When we looked at the answers that participants with dementia provided, it was clear that in addition to not recalling the statements they had been read, some of the answers they gave us differed from the material presented to them. We called these memory intrusion errors. This is something that is again very common among people living with dementia. Sometimes, these errors did not seem to be related to anything that had been read, but at other times they were clearly related to the presented material. On occasion, participants reversed the emotional direction, or valence, of the statement such that it became more or less threatening. For instance, instead of recalling the highly negative statement that the illness would make it harder to remember the names of family and friends, sometimes people would say that the illness would not make it harder to remember the names of family and friends.

Similarly, other participants misremembered a low-threat statement, recalling it as being more severe than it actually was. For instance, the statement, “the illness will not change who you are”, might be recalled as “the illness will change who you are”. The other type of error that participants made was to repeat a sentence they had already recalled for a second or third time.

When we looked at the pattern of these intrusion errors, we found a clear difference. Compared to participants who had been instructed to think of the statements as relating to Chris, those who had been asked to connect them to themselves were significantly more likely to reverse the high-threat statements—thereby making them less threatening—and to repeat the low-threat ones. What this suggests is that people living with dementia show evidence of two types of memory biases that protect their sense of self: in addition to being less likely to recall self-threatening information, the types of errors made also act to reduce the level of threat.

This latter memory error—in other words, recalling the wrong information—seems to only happen with people who have dementia. When we looked at the intrusion errors made by older people without dementia, there were no differences of this kind between people who had been asked to remember the information as if it related to them and people who had been asked to remember it as being related to Chris. In fact, these participants made very few of these sorts of mistakes. Instead, the older people without dementia tended to either recall a statement correctly or not to recall it at all. Instances of intrusion errors were few and far between.

Benefits of Mnemic Neglect Effect for Dementia

On considering these findings, we argue they afford us much insight into the way people process information about their illness and are, as a result, crucial if we want to better understand how people with dementia think and feel about their condition. Some people, as we have seen, find it especially hard to talk about their illness. Typically, when this is the case, they do two things. They tend on the whole not to recall information about their illness, but when they do, what is recalled is often altered in fundamental ways. For instance, a person might deny that they have been told about their diagnosis, or they might insist that they can still function as they have always done despite being told to the contrary.

These two sorts of errors are precisely what we found in our experiments: people failed to recall the more threatening aspects of their illness, but when they did recall information about it, they made mistakes. Yet, at the same time, their recognition of this information is preserved, showing that it has still been processed, albeit at a more shallow level. Crucially, both types of error are in the direction of reducing the level of threat to their self-identity.

These findings are consistent with the published literature on dementia. Indeed, there is much evidence to indicate that even when someone with a diagnosis of dementia refuses to acknowledge their illness, it is often clear from their behaviour that they are, in fact, aware of it at some hidden level. This demonstrates a clear distinction between the diminished explicit recall of a threat and the preserved implicit recognition of it, the first of which operate in the realm of full consciousness, the latter outside of conscious awareness [25].

What we believe our research adds to the literature already published is that, by adapting methodological techniques from social psychology, we have been able to break down these psychological and social factors into their constituent parts. This enables us to manipulate specific variables in a controlled manner and also measure outcomes more precisely. This gives us a much finer and more nuanced understanding of these complicated psychological defence processes.

Conclusion

We spent a large part of this chapter describing research that has been conducted examining the mnemic neglect effect. There is a solid experimental evidence base for this self-protective memory bias. This literature provided the necessary impetus for our own research on dementia. We intended to see if these standard effects could also be found in people with severe cognitive impairment. We are pleased to report that our studies did indeed reproduce this effect. Importantly, replicating these effects provided us with many crucial insights into the way emotions affect how people process and deal with a diagnosis of dementia. Our studies suggest a reason why people with dementia are particularly poor at remembering information about their condition when it relates to them, an explanation that is not merely based on the fact that they are experiencing a cognitive impairment. In the next chapter, we will go on to look at a further set of studies that we have carried out which help to show how it is possible to increase the amount of information someone with dementia recalls about their illness without making them feel more anxious or depressed.

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Footnotes 1

Chris was selected as it is gender-neutral and so would be appropriate for everyone who took part, except when, of course their name was also Chris. In these cases, an alternative name was used.

2

We are grateful to Tom Ingram at the RICE memory clinic and Vicky Page, Abbie Jones, and the other researchers within NHS memory clinics for their help collecting these data.

© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_8

8. Increasing Recall Without Increasing Distress

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

This chapter sets out the results from a research programme that has explored the benefits of nostalgia for people who are affected by dementia. First, we replicated the finding from social psychology that nostalgic reminiscence increases levels of self-esteem, social connectedness, and meaning in life for people living with dementia. We then found that by increasing psychological resources, participants with dementia were better able to recall more information about their condition, including material deemed threatening, without at the same time becoming distressed. This suggests that enhancing psychological resources will enable people to manage the distress of their dementia. Additionally, these findings may mean that current practices in Reminiscence Therapy need to be revised such that the focus is on the recall of specific nostalgic memories rather than non-specific ones.

Keywords

ReminiscenceNostalgiaDistressDementiaAwarenessSelfIdentity

In the last chapter, we described how social psychology research has shown that information directed at a person that relates to core aspects of their identity is less well recalled than either the same information when it is directed at someone else or when the material is less threatening. This pattern of selective forgetting is called the mnemic neglect effect. Our own research has shown that older people both with and without dementia show the mnemic neglect effect for information about dementia. We believe this is important as it accounts for the apparent mismatch between a person’s apparent failure to acknowledge their dementia and an underlying implicit awareness of it [1]. As such, our findings have important implications for dementia care as it provides an analogue, or experimental equivalent, of an essential emotional process through which people adjust to a diagnosis of dementia.

In this chapter, we present the second element of our research programme that focuses on replicating another feature of research from the field of social psychology, namely whether under some circumstances it is possible to reduce the impact of the mnemic neglect effect. While it is important for people to have ways of reducing the emotional impact of threats such as dementia, at the same time it is also important for people to be able to talk about what is happening to them. This reduces strain on carers and means that they are better able to make decisions about their own future. What is important, however, is to make sure that the process of thinking and talking about their dementia is not emotionally overwhelming. This is what we shall describe in this chapter.

One way to eliminates the mnemic neglect effect is to give people a boost to their self-efficacy before carrying out the types of experimental tasks we described in Chapter 7. When participants who do not have dementia are then asked to recall threatening information, there is no evidence of selective forgetting. What we then wanted to do was to see whether research participants with dementia would be able to recall more of the otherwise threatening dementia-related material without at the same time increasing their levels of distress. The method of increasing the person’s psychological resources that we chose involved asking participants with dementia to remember a nostalgic memory. However, before we can describe that procedure in more detail, we need to explain why nostalgic memories are different from other types of memory.

Nostalgia

What then do we mean by nostalgia? It is undoubtedly a term much in use. Right from the start, we wish to draw a distinction between reminiscence and nostalgia. Often, they are used interchangeably. However, there is a clear difference between the two, one that is essential when arguing later for an intervention we have developed for use with people who have a diagnosis of dementia. The difference is this. Reminiscence refers to, “the act or process of recalling the past” (p. 66) [2]. Nostalgia, on the other hand, is somewhat different as it focuses on the emotional and social qualities of the memories that are generated. There is a sense of yearning implied by the term [3]. Some have argued that nostalgia and our concept of the community are intrinsically linked [4] in that they both refer to a sense of belonging and feeling part of a community, be it people or ideas. This is something we shall return to shortly when we look at the impact of nostalgic recall on our outlook on life. The Oxford English Dictionary, for instance, defines nostalgia as, “a sentimental longing for the past” [5]. Reminiscence, then, is the act, while nostalgia is the sensation. Importantly, not all acts of remembrance produce nostalgic feelings.

Although nostalgic memories are generally positive, at times there may be a bittersweet element to them, with a person recalling a life that is now firmly in the past [6]. Engaging in nostalgic recall is incredibly common. In fact, four-fifths of students report feeling nostalgic at least once a week [6]. Importantly, while reminiscing is the act of recalling the past, there is no assumption that the memory recalled will be a particularly nostalgic one. Reminiscing may well involve recalling a nostalgic memory. Equally, however, it may involve recalling a memory that someone is not nostalgic about.

In developing our work around nostalgia and people living with dementia, we have been guided by the combined expertise of our collaborators, Constantine Sedikides and Tim Wildschut. Their work shows that nostalgic reminiscence, compared to non-nostalgic reminiscence, serves four main purposes [6]. It is a reliable source of positive feelings and emotions, thereby bolstering mood. Self-esteem is increased too such that people feel more positive about themselves. There is a social element here also, with people reporting feeling a greater sense of connection with others around them, as well as showing a more secure attachment style in their interactions with others. Finally, nostalgic reminiscence increases the meaning people derive from life. As we set out in previous chapters, all of these benefits of nostalgia are significant psychological resources that have been consistently shown to buffer people against existential threat [5].

Nostalgia and Terror Management

Previously in this book, we have argued that Terror Management Theory provides a necessary framework to help us to better understand some of the emotional responses people living with dementia experience about their illness. At the root of this theory is a person’s awareness of their own mortality [7] and how people defend themselves against the anxiety of such thoughts that would otherwise arise from this knowledge. However, it is not only knowledge of one’s mortality that provokes these psychological defences. Aspects of life that remind people of the inevitability of dying also invoke these existential defences.

Two such reminders are illness and ageing [8]. Not only does the construct of dementia encompass both of these, but it does so in an especially threatening way. Terror Management Theory contends that the principle way in which people defend themselves against this type of threat is by throwing themselves into those aspects of their life that provide them with a greater sense of meaning and purpose. Doing this protects us against the fear of death and, by extension, the fear of dementia, by enabling us to feel part of a larger whole, one that transcends our own insignificance.

A series of experimental research studies have shown that when people are reminded of their mortality, they fall back on their cultural worldviews—those social communities that they are a part of and which help to make up their identity. People become more religious and more patriotic and in so doing become less tolerant of others who they believe do not share these values [9, 10]. In more fully embracing cultural worldviews, people gain not just a greater sense of being connected to others who share these same worldviews, but also a greater understanding that their life has meaning and purpose, thereby enhancing their belief in themselves. According to Terror Management Theory, these psychological resources—namely social connectedness, meaning in life, and self-esteem—provide a buffer against existential threat and so improve emotional well-being. Positive emotions are increased and anxiety reduced.

In everyday life, most people manage to deal effectively with reminders of their own mortality. We encounter them on a fairly regular basis but without being overwhelmed by emotional distress. Indeed, we may not even notice these reminders. As we saw in Chapter 7, this is because mnemic neglect works in conjunction with other defences to make us resilient. One way people defend themselves against reminders of their own mortality is to recall a nostalgic memory. Nostalgic reminiscence counteracts the sense of threat associated with knowledge of one’s mortality by instilling in the individual a sense of their own worth [5], by enabling them to feel more connected to the significant people in their lives, and by providing them with a knowledge that their lives have meaning [6]. Consequently, as nostalgia builds up these psychological resources, it provides a buffer against the anxiety that would otherwise arise from becoming aware of one’s mortality. In other words, being nostalgic seems to offer a vital way for people to manage the feelings of distress that would otherwise arise from an awareness of their impermanence [5].

The reason we are able to describe the effects of nostalgia with such confidence is because of the series of studies carried out by Constantine Sedikides, Tim Wildschut, and their colleagues [5]. In one of these experiments, each participant was asked to complete a measure that assessed how predisposed they were to be nostalgic. Some participants were then requested to reflect on their own death—the mortality salience condition—whereas others were instructed to think about a visit to the dentist—the comparison or control condition. By asking people to reflect on the dentist, the researchers were able to control for the elicitation of negative emotions—no one likes going to the dentist, after all—while at the same time being confident that there would be no attendant fear of death.

After a brief distraction, all of the participants completed a questionnaire that measured the extent to which they felt their life had meaning. Those prone to be nostalgic who were in the mortality salience condition—in other words, those who were asked to reflect on their own death—tended to rate their lives as having more meaning and value when compared to those who were not predisposed to be nostalgic. In this sense, people who are predisposed to be nostalgic seem to have an advantage by being better able to tap into one of the critical psychological resources that will help them deal with the effects of exposure to thoughts of their own demise. Nostalgia provides a person with a heightened sense that their life has meaning.

For the researchers, having seen that nostalgia helps people deal with the consequences of considering their mortality, it was important to see if nostalgia could also help protect individuals from thinking about death in the first place. In the parlance of social psychologists, does nostalgia reduce the accessibility of death-related thoughts?

In an extension of the previous experiment, the researchers used a similar set-up, with some participants being asked to contemplate and write about their own death, whereas others were instructed to think about a visit to the dentist, followed once more by a distractor task. For participants in the mortality salience condition, those people who were more prone to nostalgic reminiscence subsequently had fewer thoughts about death. Once more this is evidence that nostalgia protects the individual from threats concerning their own mortality.

It is clear from these experiments that the benefits of nostalgia are robust. The buffering effect of nostalgia in protecting the person from anxiety caused by thoughts of their death was not altered by differences in participants’ levels of self-esteem or mood, or the extent to which they felt connected to the central figures in their social world. The mere act of participants reflecting upon their own past was sufficient to protect them from any distress arising from awareness of their mortality.

Being nostalgic then can be thought of as an adaptive strategy that helps people deal with the anxiety that would otherwise arise from situations where they face existential threats. This is not to say that being nostalgic is the only strategy that people can draw upon when they feel their very existence threatened. Sometimes people invoke an “us and them” attitude, in which they are more hostile towards those who are seen to be members of opposing social groups [11]. Still, others choose to engage in risk-taking activities that strengthen their self-esteem in the short-term even though there are likely negative long-term consequences to these behaviours [12].

Nostalgia is one of several different strategies that people can draw on to reduce the impact of existential threat. However, unlike risk-taking or out-group hostility, nostalgia is a more benignant strategy, one that is replete with therapeutic possibilities that we shall now explore.

Nostalgic Reminiscence and Dementia

So far in this chapter, we have described how nostalgia can be a powerful method of enhancing the psychological resources available to someone. A review of almost fifty studies into the impact of nostalgia with non-clinical populations carried out by Sanda Ismail, then a doctoral student of ours, and now Research Fellow here at the University of the West of England, confirmed just how powerful nostalgic memories can be compared to other types of memories [13]. Sanda’s review identified improvements in mood, social connectedness, self-esteem, meaning in life, self-continuity, and optimism, all of which we have already talked about earlier in the chapter. Moreover, the size of these changes, albeit within well-controlled experimental studies, suggested that such nostalgic reminiscences could have an impact within clinical contexts as well as in the laboratory.

However, all of these studies have been carried out with people who do not have dementia, so before we could feel confident enough to begin to explore the clinical significance of nostalgia, we needed to check whether nostalgia had the same impact for people living with dementia as it does for those without the illness. In the first study, we wanted to see whether the psychological benefits of nostalgia would extend to people living with dementia. Participants, all of whom had been diagnosed with either Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, or mixed dementia, were randomly assigned to one of two conditions: either being asked to recall a nostalgic memory or an ordinary memory. Participants were provided with a dictionary definition of either “nostalgia” or “an ordinary event” and were then asked to recall an appropriate memory [14]. As predicted, those participants in the nostalgia arm of the study showed significant improvements in social connectedness, meaning in life, self-continuity, optimism, and positive affect. This was evidence that the benefits of nostalgia did indeed generalise to people with dementia.

In the second study, music was used to evoke nostalgia. Again, this is a standard procedure used in social psychology to examine the effects of nostalgia [15]. Music may be particularly suitable for inducing nostalgia among individuals with Alzheimer’s disease both because memories stimulated by music appear to be reasonably well preserved in dementia [16] and because music triggers memories that contain more emotional content and are retrieved faster [17]. Musical memories also tend to be self-defining memories [18]. They are intensely personal, elicit a strong emotional response when recalled, appear with vivid intensity, and seems ever-present in our mind.

For this study, participants were allocated into pairs. Both participants nominated their favourite nostalgic music. Sanda then randomly selected the music of one of the participants and played this to both of them. One participant, therefore, listened to music that was highly nostalgic for them. For the other member of the pair, listening to someone else’s choice of music would not trigger the same nostalgic reaction. Again, the findings from earlier non-clinical studies were replicated in people with dementia, with those listening to self-chosen nostalgic music showing highly significant improvements in social connectedness, meaning in life, self-continuity, optimism, and self-esteem.

Nostalgia, whether it is triggered by recalling a memory or through listening to music, seems to lead to the same enhancement of psychological resources in people living with dementia as it does in healthy adults. While this is of interest in itself, we wanted to find out whether strengthening these resources might help people to better cope with self-threatening information. As we have described previously in this book, people living with dementia will often come across reminders of their dementia on a daily basis, information that presents a threat to their self-concept. From our clinical experience, we know that some people who are living with dementia are better able to face these reminders of their dementia without being overwhelmed. We also know that others cannot.

As seen in Chapter 7, previous studies have shown that a psychological process, the mnemic neglect effect, protects the self against threatening feedback. People who were living with dementia failed to recall highly threatening information about their condition when it was presented in such a way that it directly related to them rather than to another person. In other words, they demonstrated the mnemic neglect effect for dementia-related information [17]. We decided to test whether nostalgia would provide people living with dementia with the necessary psychological resources that would allow them to recall more information concerning the highly threatening aspects of condition. We were interested in understanding whether receiving a nostalgic boost would eliminate the mnemic neglect effect that we described in Chapter 7. Once again, just as in our earlier research, we asked people living with dementia to recall twelve highly negative and twelve less negative statements about dementia. However, we made two changes to our procedure. First of all, we randomly divided participants into two groups: half were asked to bring to mind a nostalgic memory, the remainder were asked to recall an ordinary memory. Then, instead of asking participants to recall the statements as either relating to themselves or to a person called Chris, all of the participants were asked to consider the statements as if they applied to themselves.

In total, we recruited fifty people living with mild levels of dementia. Our findings showed that the recall of all dementia statements improved, both those that were highly negative and those that were less negative. Indeed, the recall of participants in the nostalgia condition for highly threatening statements was now comparable with that of participants in our previous research who had been asked to recall the statements as if they applied to someone else. This strongly suggests that when people with dementia have a boost to their psychological resources, the mnemic neglect defence is not necessary. In addition, our previous finding that people made different types of mistakes—what we called intrusion errors—was no longer present. Importantly, increasing the number of threatening statements that people recalled did not lead to an increase in anxiety or distress. In fact, the evidence pointed to an increase in positive mood. In a genuine sense, then, using nostalgia to boost people’s psychological resources seems to give participants the resilience to face the threat posed by their illness.

Nostalgia-Based Reminiscence Therapy

Earlier in the chapter, we defined what is meant by reminiscence and nostalgia

. We pointed out that not all forms of reminiscence involve nostalgia. We now want to go a step further and distinguish between reminiscence therapy and nostalgic reminiscence

. Reminiscence Therapy is concerned with, “the discussion of past activities, events and experiences” [19]. The origins of Reminiscence Therapy date back to work in the late 1960s by Robert Butler whose 1963 paper, The life review: An interpretation of reminiscence in the aged [2], set the ground for the development of both Reminiscence Therapy and also Life Review. While initially intended for “the aged,” it was not long before it began to be used for people living with dementia. Over fifty years, Reminiscence Therapy for people living with dementia has been one of the most widely evaluated and researched interventions. However, despite this, the evidence base supporting Reminiscence Therapy is surprisingly thin. For instance, a large multinational trial of Reminiscence Therapy for people with dementia conducted by Bob Woods and colleagues found no evidence of any positive, beneficial therapeutic effect, and indeed, it uncovered evidence that the intervention left caregivers feeling more distressed, perhaps because they felt guilty about being expected to deliver reminiscence at home in addition to all their other existing commitments [20].

Reminiscence Therapy does not explicitly direct someone to focus on the emotional content generated through the act of reminiscing. Consequently, it risks being constrained in its overall effect as it does not emphasise the important emotional and psychological qualities that nostalgic memories creates when compared to non-nostalgic recall. Yet, the evidence that these two types of memory have different effects is robust and consistent.

For instance, in a study that we are in the process of publishing, we have looked at the differences between the nostalgic and non-nostalgic memories that people recalled. Our analysis showed that nostalgic memories contained more social words, especially more words relating to family and friends, and were rated as indicating more engagement with other people, higher levels of companionship, and a greater feeling of being closer to others. The nostalgic memories were more likely to have themes of increased self-esteem and a greater sense of self-pride, as well as expressing a higher level of continuity or connection between the past and present self. Finally, nostalgic memories were significantly more likely to be rated as containing activities that elicited emotions, providing their life with more meaning and a higher level of satisfaction.

In other words, the reason why nostalgic memories have such different psychological consequences is because the content of these memories differ significantly from that of other memories. They are much more likely to have social and self-oriented functions, as well as elements that enhance optimism and perceptions that life is meaningful [21].

Our research to date has shown that nostalgic reminiscence has many benefits for people living with dementia. Importantly, it enhances their psychological resources and enables people to recall more information about their illness without becoming more anxious or distressed. Given the cumulative evidence for the benefits of nostalgic reminiscence, we are currently developing an intervention that utilises nostalgia which we describe as Nostalgia-Based Reminiscence Therapy. So far we have tried this new intervention with six couples, all of whom have found it helpful.

More generally, we believe it is essential that therapists focus on facilitating the recall of nostalgic memories rather than just encouraging people to engage in reminiscence per se. There are many different ways in which this nostalgic effect can be produced. A person may be directed to recall a specific nostalgic memory. Alternatively, an appropriate trigger, such as music, smells, keepsakes, and locations, maybe utilised. Such triggers hold personal and nostalgic associations for the individual and so can be a powerful resource. However, music may well elicit a stronger emotional response as well as a more in-depth and faster immersion into nostalgia than other triggers [22]. Indeed, music is often referred to as an all-brain phenomenon, one that is relatively well-preserved in dementia [16].

Jack and May—Using Nostalgia as an Aid to Orientation

Jack first attended the clinic after his wife of over sixty years, May, had been admitted to a psychiatric ward specifically for people with dementia. For the previous few months, she had become increasingly confused and distressed, failing to recognise either her home or her husband, and instead insisting that she be taken to her “real” home. Almost as worryingly for Jack was May’s general emotional decline over the previous year. She had never felt comfortable talking about emotionally difficult experiences, and she had always tended to downplay the impact of her dementia. However, as her dementia had become worse, May had become increasingly anxious, starting to find it difficult to sleep, worrying about small things, and needing a great deal of reassurance.

For the psychiatrist who treated May, the cause of her distress was her Alzheimer’s disease, although he had also begun to consider whether elements of frontal-temporal dementia might also explain her increasingly bizarre behaviour. He prescribed her anxiolytics and an antidepressant. For his part, Jack accepted May had dementia. However, he felt the primary cause of May’s distress was that she had a nervous breakdown caused by her distress at her dementia. It was her difficulties in accepting the emotional implications of her dementia that struck him.

When she was discharged from the ward, May was at first much more settled. Her new medication seemed to be working. However, gradually she again became convinced that, while the house she was in looked exactly like her home, and while Jack looked exactly like her husband, neither was quite right. Sometimes she would insist that she be taken back to her real house, and would demand that Jack go away so that her “real” husband could come back. Their Community Psychiatric Nurse described to Jack how damage to the deeper areas of the occipital lobes of May’s brain meant that while she could see faces, people, and places, it often made it hard for her to integrate these details and to recognise them as emotionally familiar and significant figures.

Gradually, Jack began to make sense of how he could help May. He noticed that she was impervious to argument or reason and that she was not only resolutely insistent that she was right, but that no matter how delicately he put his case to her, she would become increasingly distressed if she felt she was being challenged. So his first insight was that reminding May of her dementia upset her and that no matter how bizarre May’s comments were, he should not try to correct her. Jack’s second insight came when he realised that May could recognise some of her house, and that when he drew her attention to these details, the recognition of them served to orientate her more generally. The things that May specifically recognised were the parts of her house that held strong emotional ties: a mature apple tree that she had planted as a sapling when they first moved in, almost thirty years before, and whose apples she had picked and cooked every autumn; scratches to the wall made by careless workmen when installing her beloved cooker that still enraged her. The apple tree and the marks on the wall were emotionally significant to May because they held a nostalgic significance for her. They spoke to aspects of her life that gave her a sense of meaning and purpose. They were almost essential parts of her being.

From the perspective of our work adapting Terror Management Theory to dementia care, Jack’s insights into May’s behaviour make sense. The deterioration of her cognitive abilities was undoubtedly symptomatic of the underlying disease processes that defined her dementia. However, the flashes of lucidity were associated with her being able to make connections because of the nostalgic associations of the items she recognised. Elsewhere, our colleague Tim Wildschut and a doctoral student working with him at the University of Southampton, Alice Oliver, have just begun to explore the capacity of nostalgic items to help people living with dementia to orientate themselves spatially.

This draws on another benefit of nostalgia that has been identified in the social psychology literature. Tim and his colleagues have shown first that when people without cognitive impairment experience spatial disorientation—in other words, they feel lost—their levels of nostalgia increase. Secondly, when the researchers then introduce nostalgic pictures into the person’s environment, this sense of feeling lost reduces and they are better able to navigate around their location.

There is something of this in May’s response to the nostalgic triggers of the apple tree and the marks on the wall in her kitchen. Seeing these helped to reduce her feelings of being lost and disoriented in her own home. They acted as cues to help her to reorientate herself into a world in which she could again feel connected to Jack and to her past self and in which life, once again, had some meaning and purpose.

Conclusion

The studies of our research team into the impact of nostalgia on people living with dementia replicate a number of positive effects only previously seen in adults without dementia. Recalling a nostalgic memory affords benefits that are not possible from non-nostalgic memories. They increase self-esteem, enhance the sense that life is meaningful, and enable people to feel closer to those around them. Nostalgic memories trigger psychological resources that help people face existential threats without becoming more distressed. This is precisely what we found when we partially repeated the experimental procedures that we described in Chapter 7. Participants who had recalled a nostalgic memory had greater psychological resources and were able to recall more threatening information about dementia, without at the same time becoming more distressed. These findings have important clinical implications, not least of which is the need to adapt Reminiscence Therapy so that it focuses on nostalgic memories.

References

1.

Clare, L. (2002). Developing awareness about awareness in early-stage dementia: The role of psychosocial factors. Dementia, 1(3), 295–312.Crossref

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Ismail, S., Christopher, G., Dodd, E., Wildschut, T., Sedikides, C., Ingram, T. A., et al. (2018). Psychological and mnemonic benefits of nostalgia for people with dementia. Journal of Alzheimer’s Disease, 65(4), 1327–1344.Crossref

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Sedikides, C., Wildschut, T., Routledge, C., Arndt, J., Hepper, E. G., & Zhou, X. (2015). To nostalgize: Mixing memory with affect and desire. Advances in Experimental Social Psychology, 51, 189–273. Elsevier.

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© The Author(s) 2019

Richard Cheston and Gary ChristopherConfronting the Existential Threat of Dementiahttps://doi.org/10.1007/978-3-030-12350-5_9

9. An Existential Approach to Dementia

Richard Cheston[1] and Gary Christopher[1]

(1) Department of Health and Social Sciences, University of the West of England, Bristol, UK

Richard Cheston (Corresponding author) Email: richard.cheston@uwe.ac.uk

Gary Christopher Email: gary.christopher@uwe.ac.uk

Abstract

People living with dementia continually face reminders of their illness, be it subtle, insidious failures in carrying out everyday tasks, being asked to complete a cognitive assessment that explicitly tests their deterioration, or hearing a news report on the radio about exciting new drug discoveries for dementia. In this book, we have argued that people defend themselves in different ways against the emotional disequilibrium that these existential reminders would otherwise create. Framing dementia as a threat has many advantages. There are conceptual benefits from binding together what until now have been disparate areas of research. This perspective also opens up new methodological approaches and theoretical insights. Most importantly it emphasises the need to focus care on sustaining those psychological resources that buffer people against the threat. A Terror Management Approach to dementia emphasises the need for services to provide post-diagnostic support that helps people adjust to their diagnosis.

Keywords

DementiaAlzheimer’s diseaseExistential threatPost-diagnostic supportTerror Management Theory

Dementia is an enormously complicated and multifaceted condition with changes occurring at many different levels. Not only does dementia involve the progressive loss of neurological functioning, but there are changes in relationships characterised by increasing levels of care and the loss of independence as well as physical changes. People are likely to experience difficulties in swallowing, eating and coordinating their movements. They may misperceive the world, sometimes seeing objects when they are not there, and yet at other times failing to recognise people they have known all their life. Consequently, for any book to reflect the entirety of dementia and its impact is impossible.

In this book, we have therefore chosen to focus on what we believe is a central element of the experience of dementia: namely the way it presents an existential challenge. We have argued that self-esteem, social connectedness, self-continuity, and meaning in life all act as psychological resources that protect the person from experiencing distress when they are reminded of their dementia. These reminders are frequent. They occur when someone is initially given their diagnosis by a doctor, when they stumble upon an advert by the Alzheimer’s Society, or when a person experiences frustration as a result of increasing forgetfulness. The poignancy of each of these reminders lies in the meaning that they carry. We are all capable of forgetting a name or an appointment, but for someone with dementia, such forgetfulness is profoundly significant. It becomes a symptom of an underlying illness, one that signifies a far-reaching, existential threat.

To hold at bay the anxiety that such existential threats create, we adopt worldviews that protect our self-esteem, provide us with a sense of purpose and meaning, and enable us to feel connected to the important people in our lives. However, to protect this way of thinking, we fall back on a range of defences that confirm our self-importance and insulate ourselves from existential anxiety. Terror Management Theory proposes that we are highly motivated to develop close relationships to convince ourselves that we will somehow live on after our inevitable death. As we have described, within the clinical context of dementia care such defences might include believing one’s parents to still be alive or shadowing one’s primary attachment figure.

In the laboratory, we have illustrated how one of these defences, the mnemic neglect effect, operates in the same way for people living with dementia as it does for everyone else. We argued this showed that forgetfulness is not just a neurological phenomenon, but that it also acts selectively to reduce threatening information from entering conscious awareness. Within this context, boosting psychological resources, as we demonstrated was possible by using nostalgic reminiscence, reduces a person’s need to use these defences. If we translate this into a clinical context, we would imagine that high-quality dementia care and supportive environments act in the same way. Indeed, as Tom Kitwood (1997) speculated, where a person staying in residential care shows a general lack of insight, this may well be symptomatic of inadequate levels of person-centred care as opposed to anything else [1].

Moreover, while these defences serve the short-term psychological function of protecting the self, if maintained across longer periods of time, they can also be dysfunctional, often creating additional stress. To use a metaphor from Gestalt psychotherapy [2], if you walk through life with your eyes closed, then eventually you begin to bump into the furniture.

Existential themes have recurred repeatedly in dementia research, yet they have rarely been explicitly named as such. The need to feel socially connected, of preserving high levels of self-esteem, and the importance of establishing a self-continuity while making sense of the world and one’s dementia, have all long held a place in dementia research, but they have not previously been considered as linked strategies within an overarching framework such as Terror Management Theory. However, as we have argued, when viewed from the perspective of Terror Management Theory, each of these psychological resources buffers the person against existential threat. Just as people who have higher levels of these resources are better able to cope with being reminded of their mortality, we believe people who are living with dementia will be better able to cope with reminders of their dementia if they can draw on these same psychological resources. This is likely to be the case both when neurological impairment is mild and when it becomes increasingly severe. For instance, while the attachment-seeking behaviours of people living with dementia may vary as their illness progresses, what remains constant is the need to establish greater security by drawing on their social relationships.

The Importance of Acknowledging the Existential in Dementia Care

We believe that there are a number of reasons why this way of thinking about how people manage their feelings in dementia is essential. First of all, there are theoretical advantages from unifying what is otherwise a collection of somewhat disparate theories relating to identity, attachment, and meaning-making. In philosophy, there is a rule of thumb, called Ockham’s razor, which states that a simple solution should be preferred to a more complex one because it will contain the fewest assumptions. If there are fewer assumptions, the theory better lends itself to rigorous hypothesis testing. We believe that applying Terror Management Theory to dementia care adheres to this Law of Parsimony. It provides a more straightforward and economical way of understanding a wide range of different behaviours, phenomena, and concepts in dementia care.

The second reason for using Terror Management Theory as a framework is that it provides new ways of approaching dementia research. As we have described, Terror Management Theory has developed from thirty years of research, and has an established methodology of precisely defining variables and then manipulating these in order to test hypotheses. Thus, it satisfies a basic tenet of science: it provides testable hypotheses that can be empirically verified or rejected [3].

As we have seen in the case of our own research, this methodological precision provides a new way of looking at the important clinical concept of insight. It has enabled us to explore with some precision the relationship between levels of threat and the amount of information that people living with dementia recall. Remaining within this methodological paradigm, we were then able to study how boosting levels of psychological resources impacts on recall of the same material. In doing so we can study not only how people are able to defend themselves against existential threat, but how the impact of threat can be mitigated effectively. While we acknowledge that this type of analogue study is far removed from the day-to-day life of people living with dementia, we have shown how it complements much of the qualitative clinical research that has amassed over the years.

In this way, adopting a Terror Management perspective adds to the existing paradigm of person-centred dementia care. Terror Management Theory holds that people are better able to face existential threat if they have higher levels of self-esteem, feel more connected to the social world around them, have a greater sense of meaning in life, and an awareness of their own self-continuity. This is, in essence, a formulation of Kitwood’s concept of personhood, in that it defines a state of psychological well-being in a similar way. We would argue that this way of approaching this concept brings many advantages; for instance, as we indicated in Chapter 8, it may allow us to more precisely measure and evaluate the impact of interventions.

A third reason for advocating an existential framework in dementia care is that it has the potential to develop, or at least to refine, existing interventions within dementia care. An intervention based on nostalgic reminiscence is likely to be effective as part of a clinical treatment plan. The research of Tim Wildschut, Constantine Sedikides and their colleagues has shown that nostalgic reminiscence boosts psychological resources within the general population. Our own research has confirmed that the benefits for people living with dementia are at least as great. Consequently, our research findings also point towards a likely deficit in how Reminiscence Therapy is generally conceived and implemented, namely its reliance on eliciting memories per se rather than ones that are specifically nostalgic. More generally, by focusing on the importance of psychological resources in adapting to threat, Terror Management Theory helps us to understand why some people struggle to live well with dementia. It also leads to the conclusion that the focus of services for people living with dementia should be to provide people with the psychological resources that they need to buffer themselves against those existential threats they face every day of their lives.

Improving Post-Diagnostic Support

One way of illustrating the potential of an existential approach for clinical practice is to look at the way in which people who have recently received a diagnosis of dementia adjust to the illness. In the UK, the conviction that a timely diagnosis would enable people to better prepare for their future has led to a drive towards increasing the availability of dementia assessments so that greater numbers can be diagnosed at an earlier point in the illness. However, if people who have been diagnosed with dementia are to make informed decisions about how to maintain well-being following such a diagnosis, they need to be able to recognise, to name, and to think about dementia. They need to consider how it is affecting them now and how it may impact on them in the future.

All too often, however, memory assessment services tend to focus on the assessment process that precedes a diagnosis rather than on providing meaningful support to people immediately after a diagnosis has been delivered. Indeed, where people cannot be provided with medication, such as is the case for people with a diagnosis of vascular dementia, there is often even greater pressure to discharge them sooner. Part of the reason for this post-diagnostic cliff in the UK [4] is that service commissioners and managers tend to focus on meeting the targets for diagnosis set by central government. What tends to get overlooked are the emotional repercussions experienced by those who have just received this most threatening of diagnoses. Consequently, there has been an absence of informed thinking about what can be done to help people through this frightening transition.

In this book we have argued that many people who are assessed at a memory clinic are faced with two competing impulses: while they typically want to know the outcome of the assessment, the fear that they might be told they have dementia is so threatening that often a part of them would rather not know. We have also illustrated that some people who are living with dementia can be helped to come to terms with their condition in such a way that they will not be overwhelmed by it. This can be achieved by helping them talk more openly about their illness, and not just with clinicians, but with family and friends alike. This will require skilled help in many cases, something that is often not available within an NHS Memory Clinic or a charity such as the Alzheimer’s Society.

To meet this need, one of us, RC, working with another Clinical Psychologist, Ann Marshall, and researchers at the University of Southampton, created The Living Well with Dementia (or LivDem) Course [5]. The aim of LivDem is to support people living with dementia to adjust to their illness. It is designed to be facilitated by NHS nurses and other memory clinic staff who may have relatively little experience in running such sessions. Facilitators attend a two-day training course. A manual detailing the content of the course is due to be published in 2019. The LivDem course has begun to be adopted by memory clinic services in the UK, and as the example of Anna illustrates, attending the course can help people adjust to their diagnosis.

Anna—Living as well as possible with a diagnosis of dementia

Anna attended a short-term, ten-week course run by nurses from her local memory clinic that was aimed at helping people to “Live well with dementia” [5]. At the end of the course, the facilitators and some of the people who had attended and their carers were independently visited by the researcher and asked for their thoughts. The nurses described the way in which Anna had changed: “She kept saying ‘Oh my hearing is bad’. We got that she seemed to think it was about her hearing that was the issue. And as we went on through the groups it was kind of like the penny dropped a little bit and then she came to realise and accept that ‘My memory isn’t as good as it once was but I can … still lead a life you know - a happy and productive life’ … It kind of took her a while … but then she kind of took it on board and would talk about her memory and how it isn’t as good and how she doesn’t remember what her partner says”.

When Anna and her husband were interviewed he also felt that she had changed, saying to her “Probably the most important thing, is that it encouraged you in front of other people to stand up and say ‘I have dementia’. Up until that hospital session Anna was in denial that she had it but after that she wasn’t in denial and that helped a heck of a lot … Although [this] seems small it is very, very big. I mean once you’ve accepted you’ve got a problem then you will accept people trying to help you more. But if you’re in denial that you have this problem then of course you’re not prepared to accept help from anybody.”

Most importantly, Anna had also noticed that attending the course had made a difference to her, telling the researcher “I’m not ashamed to say that I’ve got it whereas I think I might have been if it hadn’t been, you know, for everybody else being so honest”.

Final Thoughts

In this book we have framed the experiences of people with dementia in terms of attempting to hold onto self-esteem, to achieve a greater sense of connection with other people, to find meaning in life, and to experience a greater sense of self-continuity. We have suggested that not only is this possible, but that it also allows people to engage more fully with their dementia while, at the same time, not being overwhelmed by it and the ensuing distress. It is important to remember that this is precisely the struggle we all face each day of our lives. We know only too well that we are mortal, that decline is inevitable at some point in the future, yet we still lead meaningful lives, ones where we are not overwhelmed by the knowledge that we will eventually die.

The challenge that people living with dementia face is essentially the same as this. In other words, they have to come to terms with their mortality and increasing frailty. People who receive a diagnosis of Alzheimer’s disease, or any other form of dementia, are not only being told that they have a terminal illness,[1] but are also being given a route map characterised by deterioration and increased dependency. They also have to face these challenges with ever-diminishing cognitive resources. Yet, despite this, the defences they employ to minimise the emotional consequences of this threat, such as mnemic neglect and attachment-seeking behaviours, are exactly the same as the ones we all use.

Thanks, at least in part, to the person-centred reframing of dementia care in the last thirty years, we now understand that it is indeed possible to “live well” with dementia. Yet, while better support may soften the impact of the diagnosis , it does not remove the brutal reality of the underlying neurological changes. We argue that a person’s experience of their dementia is characterised by a series of existential threats: the extent to which a person sees their life as meaningful may be compromised; their independence will be eroded; their identity is threatened; their relationships altered; and, inevitably, even their most basic abilities will be taken away from them over time. Thus it follows that psychological accounts of dementia that disregard these existential threats risk ignoring an essential element. People who are living with dementia are responding to a profoundly human concern—the need to make sense of a confusing, disordered world, by structuring and framing their lives as ones in which they can continue to pursue self-esteem, social connectedness and meaning. If we are to support people in facing their dementia, we need to do so by helping them build and promote their psychological resources. In effect, what we need to do is simple. We must support people in such a way that they continue to see themselves as good, valuable individuals, surrounded by those they love and who also love them. Ultimately, those with dementia need to hold onto the sense that they are both changed yet still the same person they have always been. This is a profoundly human challenge. It is one that we must all strive to meet.

References

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Kitwood, T. (1997). Dementia reconsidered: The person comes first. London: Open University Press.

2. 2.

Watzlawick, P., Weakland, J. H., & Fisch, R. (1974). Change: Principles of problem formation and problem resolution. Oxford: W. W. Norton.

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Watts, S., Cheston, R., Moniz-Cook, E., Burley, C., & Guss, R. (2014). Post-diagnostic support for people living with dementia. In R. Guss et al. (on behalf of the Faculty of the Psychology of Older People, and in collaboration of people living with dementia and the Dementia Workstream Expert Reference Group) Clinical psychology in the early stage dementia care pathway. Leicester: British Psychological Society.

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Marshall, A., Spreadbury, J., Cheston, R., Coleman, P., Ballinger, C., Mullee, M., et al. (2015). A pilot randomised control trial to compare changes in quality of life for participants with early diagnosis dementia who attend a “Living Well with Dementia” group compared to waiting list control. Aging and Mental Health, 19(6), 526–535. https://doi.org/10.1080/13607863.2014.954527.CrossrefPubMed

Footnotes 1

https://www.alzheimers.org.uk/info/20073/how_dementia_progresses/…dementia/4.

Index

A

Alzheimer, Alois

Assimilation

Attachment

Autobiographical memory

Awareness

B

Becker, Ernst

Brooker, Dawn

Brooks, Alex

C

Care

Clare, Linda

Confabulation

Cultural worldview

Culture

D

Death

Deep processing

Dementia Care Mapping

Dementia worry

Denial of Death

Deter, Auguste

Diagnosis

E

Emergence

Errors

Ethnicity

Existential approach

Existential threat

F

Family

Fear

Fear-of-loss-of-control

Feedback

Finding distance

G

Godwin, Beatrice

Goffman, Erving

Greenberg, Jeff

H

Heidegger, Martin

Hydén, Lars Christer

I

Identity

K

Kierkegaard, Søren

Kitwood, Tom

L

Living Well with Dementia

Living Well with Dementia Course (or LivDem)

M

Malignant Social psychology

Marshall, Ann

Meaning in life

Miesen, Bère

Mnemic neglect

Mortality

Music

N

Negativity

Nietzsche, Friedrich

Nostalgia

Nostalgic reminiscence

O

Optimism

Orientation

Őrulv, Linda

Osborne, Hannah

P

Parent fixation

Person-centred care

Personhood

Post-diagnostic support

Psychological resources

Psychotherapy

Psychotherapy groups

Public health

Pyszczynski, Tom

R

Recall

Recognition

Recovery

Relationships

Reminiscence

Repression

Resilience

Rook, George

S

Sabat, Steven

Sartre, Jean-Paul

Sedikides, Constantine

Self

Self-concept

Self-continuity

Self-esteem

Self-protect

Semiotic beings

Service provision

Shallow processing

Simulated Presence Therapy (SPT)

Social connectedness

Solomon, Sheldon

Stigma

Stiles, Bill

Strange situation test

Swaffer, Kate

T

Terror Management

Thomas, James

Threat

W

Waters, Hilary

Welles, Orson

Wildschut, Tim

Woods, Bob