Autonomy and dementia: what has been left unthought
The concept of autonomy is widely accepted as a value in healthcare. The dominant conception of autonomy in contemporary society stems from an understanding that equates it with independence or self-sufficiency. A person is said to be autonomous if she has the capacity to engage in critical reflection in order to choose and pursue her own self-interested preferences, unimpeded by the choices and actions of others. These criteria for autonomy are further underpinned by the metaphysical claim that self-conscious reflection is both necessary and sufficient for personhood.
To the contrary, I argue that neither personhood nor autonomy is fully captured by this perspective and, furthermore, that it ultimately fails to attend to the way we do things in the world. Attention to our concrete lived existence shows that persons are more than self-conscious, reflective beings. Rather, we are finite, embodied, discursive beings, fundamentally interdependent and embedded in socio-cultural networks of shared meaningful practices through which our personhood is constituted and expressed.1 Through supported and guided learning we appropriate the shared socio-cultural practices in which we are situated, acquiring the skills and dispositions to become autonomous members of community. That is, we become individuals who are able to enact and sustain meaningful and coherent patterns of activity that rightfully position us in our shared world.
Re-conceptualizing autonomy in light of how we do things in the world has important implications for many of our social practices, including the way we understand and care for people with dementia.
Learning to make sense of our self and our world
Unlike other creatures, the human way of being is not to live a life that is completely guided by instinct. There is an insufficient fit between human physiology and the environment that we have modified over the millennia that we have inhabited it, and we lack a structure of instinctual moves that could present ready-made answers to the question of human existence and flourishing. Instead, to be a human being is to be a particular kind of being: one who has to learn non-instinctive skills of interpreting and making sense of oneself and the world through flexible and creative thinking, so that we come to act in the world in accordance with shared structures of thought. These structures of thought are developed over time in community and they provide a cognitive or conceptual framework through which we come to understand the world and our place within it.
The structures of thought that have increasingly come to dominate western thinking embed a view of the world that seeks to explain things in abstract, theoretical discourse. It is a view sometimes referred to as 'objectivism' because it assumes that things in the world, including ourselves and our experiences, are objects that have inherent properties, with some sort of law-like relations holding between them. It also assumes that our knowledge of these things is acquired through our detached reflection on them. This theoretical orientation maintains that these 'objects' can be reduced to, and are best defined by, certain necessary and sufficient conditions. Therefore, to be a thing of a certain sort, say a person, one must satisfy the conditions that are necessary for personhood, or self-hood. From this perspective, it is argued that self-conscious reflection is not only necessary for personhood, but is also sufficient for the application of the concept. Based on this reductive account of personhood, an individual is said to be autonomous when she can make self-interested choices based upon her capacity for rational reflection, understood as a calculating, prudential activity that is unimpeded by the choices and actions of others.
Such an account can only be sustained when a number of important aspects of our human condition are overlooked. In order to better attend to our human context Martin Heidegger argues that what is needed is an approach which elucidates, articulates and remains attentive and responsive to our concrete, lived situation.2 Attention to our life-world reveals that not only are we self-interpreting discursive creatures, as noted above, but also that we are finite and embodied beings, historically, culturally and socially embedded in a shared world, a place of significance in which things matter to us.
Our understanding of the world as a place of significance develops through our embodied interactions with things, and it is guided and supported by others who show us what matters and how things are done in our particular community. Over time we develop a repertoire of habituated practices which are embodied, pre-reflective and dispositionally informed. Guided and supported by others we grow into a particular relationship and attitude to the world, so that we acquire habits of conduct at the same time that we are learning about the world. This dispositional understanding, informed by the signification of culture, history and discursive practices, is our ethos. It orients us in the world and shapes the values that come to dominate our life. It represents the significant responses of others and the ways that they have taught us to deal with the threats and opportunities that the world presents. In other words, our human situation is thoroughly relational and dialogical and we are dependent upon one another for the possibility of being understood.
For example, in learning something about the world where cups play a role, we develop our understanding of a cup not by standing back and reflecting on it and establishing its properties, but through our embodied interaction with it, by picking it up and using it in the way that we have been taught. We understand something about the cup, ourselves and the world when we engage appropriately in practices where cups are important. This embodied understanding is pre-reflective and embedded in a context of significance. Thus, we come to understand a cup not through its composition, but through interpreting its role in a caring social practice vis a vis water; its ability to hold something, the need to quench a thirst, the location of a tap, and the integrated bodily movements required to bring this all about. Our ability to conduct ourselves appropriately whilst enacting a task is a measure of how well we understand a particular socio-cultural context; it does not require us to rationally reflect on or describe the decontextualized details of the encounter.
Human understanding is not, therefore, primarily about working out what to do through a process of rationally organised, reflective information processing. Rather, it involves interpreting and integrating situated, embodied, complex communicative activity and what that means to our self and others as emerging, evolving persons. It is through our embodied, pre-reflective involvement that we learn to recognise joy in another's smile, her laughter and her movements; we feel the sorrow and pain in another's posture and her tears; we grasp the tone of another's thoughts through her expression and the sounds of her words; we understand an entreaty through her outstretched arms, and we respond appropriately because we have learnt to interpret and evaluate the meaning of these human situations.
Nested within a complex interdependent web of meaningful involvement, our personhood continually unfolds and evolves, constituted by the interactions within which we are situated and sustained, interactions which mirror to us something about who we are, what we are capable of and what is important to us. Who we become is a matter of who we interact with and, if we are fortunate, those interactions provide us with a sense of value and self-worth that positively defines our place in the world. Our personhood therefore, does not belong to self-reflection but to social recognition. And as finite creatures, who are limited and vulnerable, we need the right care and support from others in order to develop and sustain the social standing and recognition that is necessary for becoming a fitting member of community.
Over an extended period of time, through supported guidance, we become enculturated into an interdependent matrix of understandings that are normatively grounded. For example, a parent teaches a child that if they want to be a 'friend' and as a corollary have 'friends', she has to behave in certain ways and not others. The concept 'friend' is a shared concept which is rule-governed, constituted by norms relating to the truth of what it is to be a 'friend' and by which we can evaluate whether a particular act is one of 'friendship' or not. The notion of 'being a friend' then enters into what one values. Having friends elicits feelings of connection and significance in the lives of others and one feels bereft when lacking the intimacy of friendship. These normative interactions inform the way that we live and come to constitute our significant interests. Through our ongoing interactions in the world we reveal what is important to us, so that others who know us come to recognise the values that we live by.
Nurtured and sustained by others, we come to experience ourselves as someone of value as we learn to participate in a number of different roles in a range of socio-cultural contexts. We become accomplished in certain discursive practices before others, and as continually evolving creatures we learn new practices as we enter into new situations. Appropriating such well-tested social practices provides the basis of a meaningful life and locates us in a particular tradition. In learning to skilfully apply our growing repertoire of dispositionally informed, dynamic patterns of normative interaction, we come to deal with and adapt ourselves appropriately to life's contingencies in a range of socio-cultural contexts. That is, we become autonomous individuals, able to enact and sustain fitting interrelational responses to the situations we find ourselves in.
The attenuated conception of autonomy that has come to dominate western thinking radically distorts our human context. Autonomy is not about acting according to one's own desires and preferences, directed by rational, reflective endorsement. Rather, the dynamic complexity of our existential situation means that autonomy emerges as an embodied, pre-reflective, normatively informed, temporally extended, context specific, interdependent activity which can be enhanced or diminished by others, depending upon the form that our interactions take. It is not an isolated achievement and it cannot be fixed at some time.
Implications of our interdependent existence: personhood, autonomy and dementia
Any structure of thought extends beyond mere conceptualization; it not only exerts influence on those to whom the concept applies, but also has repercussions for the social arrangements which structure our families, educational institutions, health care practices and legal systems. Thus, revealing the underlying assumptions that a concept such as autonomy is based on, and giving voice to the things that have been concealed, is not just an academic exercise, but an activity in which ways of living are at stake. Reductive theories of personhood and autonomy give us an impoverished view of humanity and a distorted view of autonomy. By focusing only on specific limited intellectual functions and overlooking the fact that human understanding is fundamentally pre-reflective, embodied and dispositionally informed, we risk treating those who do not meet the limited objectivist criteria as non-persons - somehow less than human. Those diagnosed with dementia are at risk of being treated in this way.
The typical approach to diagnosing dementia is through the administration of standardised psychometric tests, which measure defects in an individual's abilities in a way that can be easily quantified. These tests involve a series of decontextualized questions which isolate particular aspects of cognition (for example, attention, perception, memory, and language) against which an individual's performance is scored, thereby enabling 'generalisations' about a person's abilities to be made. Although these reductive tools can identify some of the problems that individuals experience in their everyday life, they allow only a shallow assessment which focuses on a person's deficits, and from which many unwarranted inferences are made. Focusing on static, isolated, moments of decontextualized thought and action, fails to capture the dynamic, embedded and embodied cognitive life of a particular individual interacting in their world. Psychologist Steven Sabat has noted that standardized tests fail to give us any insight into how an individual would respond to such things as hearing a joke, being paid a compliment, recognizing another's need for help, being ignored or embarrassed.3 As already argued, our ability to respond appropriately to such human situations requires interpreting situated, embodied, complex communicative activity and what that activity means, which is a measure of our autonomy.
When we attend closely to the world of those diagnosed with dementia, we find individuals engaging in the socio-cultural dynamics of everyday life in various ways, something which highlights their ability to evaluate, interpret and respond to the meaning of the situations they are involved in. This continues to happen long after the ability to reflect on one's situation is lost. When we recognise that most of our intentional actions are pre-reflective, learned through years of embodied habituation, it follows that the loss of the ability to reflect does not detract from our ability to act autonomously. As situated, embodied beings, our actions have purpose and meaning because they are embedded in a shared world, so that responding appropriately to a situation can take many forms. Our intentional actions can become manifest through our characteristic gestures, our facial expressions, our manners, our tears and our smile, all of which show an evaluative, interpretive response to a situation and an ability to engage with the world in a way that directs the response of attentive others.
So, what does this mean for people diagnosed with dementia? In order to act autonomously and be recognised as such requires that those diagnosed with dementia are sustained by others in meaningful interactive practices and that they are positioned as persons trying to communicate something intelligible, the same things that all of us require. To turn away from this task is to fail to acknowledge that autonomy is interdependent and context-specific and that it can be enhanced or diminished by others.
Even in the later stages of dementia, individuals can convey their coherent, intact intentions but may be unable to execute them. But even then this is not unlike the situation for the rest of us. When my car breaks down, I may be able to convey my intention to have it fixed, as it matters to me, but I need the assistance of others to enable this to happen, such as someone to tow my car into the garage, someone to fix it, someone to transport me hither and thither whilst it is in the workshop. I may also need others to anticipate and suggest some things that I have not thought of.
As our self-worth and standing amongst people are constituted by our interactions with others, how others think and respond to someone diagnosed with dementia influences how she then comes to see herself. This means that it "is in their everyday interactions, beyond the neuro-pathological processes in the brain, that people with dementia can be supported in, or experience assaults on their personhood"4 and as I have argued, also on their autonomy.
When we acknowledge that our human existence is one of complex inter-dependence, that the flow of our interactions in the world are pre-reflective embodied responses to the contexts we find ourselves in, that we are dispositional creatures moved by the meanings that things hold for us, and that we are all vulnerable beings who require others to give us appropriate opportunities and support, then we see that the needs and well-being of those with dementia are not dissimilar to our own. It is an existential situation that requires us to position and sustain those diagnosed with dementia as autonomous persons.
Lynne Bowyer is a PhD candidate in the Bioethics Centre at the University of Otago. She has a Master of Arts in Philosophy and a Bachelor of Education. Lynne has worked in primary, secondary and tertiary education.
1 Martin Heidegger, Being and Time, trans. John Macquarrie & Edward Robinson (Oxford: Basil Blackwell, 1967),67-77, 333-382, 95-148, 149-168.
2 Heidegger, Being and Time, 24-28. Heidegger's approach can be described as an ontological, hermeneutic-phenomenological approach to our existential situation.
3 Steven R. Sabat, The Experience of Alzheimer’s Disease: Life through a Tangled Veil (Oxford: Blackwell Publishers Ltd., 2001), 12.
3 Steven R. Sabat, The Experience of Alzheimer’s Disease: Life through a Tangled Veil (Oxford: Blackwell Publishers Ltd., 2001), 12.
4 Ibid., p. 298.