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 clichĂ© 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 donât think about this until of course we stumble across a reminder. Knowledge of our own mortality rarely dominates our livesâwe 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 dualityâof being both aware and also not aware of our own mortalityâis 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 immortalityâthat 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 resourcesâand 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 oneâs own mortality is that people fall back on those parts of their life that provide them with a sense of being valuedâthat 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 âwrongnessâ 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 ânot knowâ about dementia, so society too often finds a way to block out the awfulness of dementia by ânot knowingâ about aspects of the illness, and most importantly by inaccurately creating the myth that dementia is a state of perpetual unknowing.
Reference
- 1.Hughes, J., & Van Der Steen, J. (2017). End of life and palliative care in dementia. In D. Ames, J. T. OâBrien, & A. Burns (Eds.), Dementia (5th ed., pp. 344â348). London: Arnold Health Sciences.