Are People with Advanced Dementia Still Persons?

Xavier Symons is a bioethicist and scholar in residence at the Kennedy Institute for Ethics at Georgetown University.

Dementia is a condition that has touched the lives of everyone. We all know someone — perhaps someone we love dearly — who has lived or is living with dementia. It is heart-wrenching to watch someone you know and love slowly fade away, not to mention the mental anguish that people with dementia themselves often experience. Yet at the same time, they are still “with us” even when they have lost their capacity to communicate.

Are people living with advanced dementia still persons? On the one hand, we want to avoid ableist assumptions. We want to avoid the trap of saying that people with advanced dementia are “no longer home”. On the other hand, we want to provide a conceptually robust account of what dementia means for a person’s life and wellbeing. We want to say that a person is still a person, regardless of the effects of cognitive decline. But we don’t want to downplay the crippling effects of their condition.

Devastating though it may be, dementia can yield a richer understanding of what it means to be a person and what it means to be present in the world.

Understanding Dementia

Dementia is a term used to describe a number of illnesses that affect the brain and a person’s ability to perform everyday tasks. Common forms of dementia include Alzheimer’s disease, Parkinson’s disease, and some forms of multiple sclerosis. Over 6 million Americans and 400,000 Australians live with some kind of dementia.

Cultural literacy about dementia is improving with each generation. In recent years, several critically acclaimed films have provided powerful insight into the realities of life with dementia, including Nebraska (2013), Still Alice (2019), and The Father (2020). Nonetheless, the stigma remains. You still hear that people living with dementia have “lost their marbles” or are “not all there”.

The Australian Royal Commission into Aged Care Quality and Safety revealed tragic reality of abuse and neglect of people with dementia in the aged care sector. While many nursing homes continue to provide excellent care to older Australians, some facilities were sites of profound misconduct, the brunt of which was borne by residents experiencing the effects of dementia. Some of the more harrowing stories included residents who were subject to sustained psychological abuse and ridicule by staff, as well as residents who were medicated with strong psychotropic drugs on a regular basis and without clinical justification.

Modern Philosophical Assumptions about Personhood

Modern philosophy has a highly cognitive conception of what it means to be a person. Personhood has come to be associated more with what a person can do, rather than who they are. We might call this a criterial definition of personhood. Criterial definitions of personhood in bioethics research — such as that articulated in Peter Singer’s Practical Ethics — focus on cognitive capacities like self-consciousness, sentience, rationality, and autonomy. These definitions of personhood have often been developed in the context of abortion debates, where scholars have fiercely debated the question of whether human moral status extends to the unborn. It is controversial enough to say, as Peter Singer does, that a foetus is not a person or that newborn infants lack personhood. Indeed, Singer’s controversial defence of infanticide has been extensively criticised.

But even scholars who might not otherwise object to Singer’s view of personhood recognise that there is a problem when it comes to people experiencing the effects of cognitive impairment.

The American philosopher Shelly Kagan, for example, has written a defence of “modal personhood” — a view that accords moral status to someone who has a capacity for personhood, but who is unable to realise this capacity. Kagan explores the example of someone who has been severely intellectually handicapped from birth. Kagan argues that it would be worse to perform a “painful or perhaps lethal” scientific experiment on a modal person than on, say, a non-human animal. This is the case regardless of the cognitive capacities of the non-human animal. He argues, in other words, that a human being’s humanity is more important than their cognitive capacity in determining personhood.

I find myself in agreement with Kagan’s intuitions on the question of personhood. If we are to value the lives of people with dementia, we must move beyond a conception of “I think, therefore I am” and replace it with a less exclusionary conception of personhood. Indeed, it is appropriate, as Stephen Post has argued, that we move to a conception of “I feel and relate, therefore I am.” As Post writes:

if we are to value those with dementia we must “enlarge our sense of human worth to counter an exclusionary emphasis on rationality, efficient use of time and energy, ability to control distracting impulses, thrift, economic success, self-reliance, “language advantage”, and the like.

We should, in other words, move beyond the Enlightenment preoccupation whereby one’s ability to know and master the world is a measure of one’s humanity. We should also reject a neo-liberal conception of personhood that reduces the concept to an individual’s productivity. Instead, we should look toward the way that human beings relate to each other to identify the essence of personhood.

Personhood — the Conferral View

What is called the conferral view of personhood, advanced by the late Tom Kitwood and Sophie-Grace Chappell, gives us an alternative conceptual lens through which to view the lives of people living with dementia.

The conferral view of dementia construes personhood as a status that is accorded to a human being by others. That is to say, personhood is essentially a social concept and the conferral of the status of personhood upon an individual requires her being in social relation to others. Kitwood, for example, argues that “persons exist in relationship” and that “interdependence is a necessary condition of being human.” According to Kitwood, there is a particular form of social relation to others that is essential for conferring the status of personhood on them. Drawing on the work of Martin Buber, Kitwood makes a distinction between I?It and I?Thou ways of relating to others. The I?It mode of relating to others, in Kitwood’s view, connotes “coolness, information?getting, objectivity, instrumentality”. In contrast, when we relate to individuals in the I?Thou mode, we engage with them on a more personal level. In his view, this latter form of social relation requires “making contact with the pure being of another, with no distant purpose, explicit or ulterior.”

Kitwood argues that people with dementia need to be constantly “recalled” to the world of persons by being treated as rational agents and moral equals:

It is often the case that a dementia sufferer who is visibly withdrawing, or becoming demoralized, is transformed by a little real attention and human contact. It is as if he or she needs to be re-called to the world of persons, where a place is no longer guaranteed.

It is vital, therefore, that our social practices are such that we continue to recognise and acknowledge the enduring personhood of people living with dementia.

Similarly, Chappell argues that attributions of personhood are “proleptic” — which is to say, they involve a degree of anticipation of traits that a person will likely express. As Chappell writes:

Contrary to what criterialism seems to suggest, we do not look for sentience or rationality or self-awareness in a creature as a test to decide whether or not that creature counts as a person. It is the other way round. Having once decided, on other grounds, that a creature is a person, we know that this makes it the kind of creature that is likely to display sentience, rationality, self-awareness, and the rest of the personal properties.

What matters, in other words, is not whether someone exhibits certain traits — such as rationality or self-awareness — but whether one is a creature of a kind that is likely to exhibit these traits. Chappell considers how a parent treats her child from the very beginning as a creature that can reason, respond, reflect, feel, laugh, think about itself as a person, think about others as persons too, and do everything else that persons characteristically do. As Alasdair MacIntyre puts it, it is through a “systematic refusal to treat the child in a way that is proportionate to its qualities and aptitudes” that the child learns to see himself in a certain way — namely, as a person.

In the case of dementia, we can apply Chappell’s definition by saying that attributions of personhood involve a remembering of the traits that a person has expressed in the past. In the case of dementia, our account of personhood is not so much proleptic but analeptic — we remember who a person was and acknowledge their life history. They may not have a capacity for verbal communication. Their own memory may be compromised. But we know this human being as person by remembering the richness of their life. The conferral view of personhood, in this sense, is an exercise in memorialisation.

From Memorialisation to Presence

Even still, I don’t wish to argue that the personhood of people with dementia just involves an exercise in remembrance. There are contemporaneous aspects of the person that we also ought to focus on. For one, we should be wary of the criterialist assumptions about personhood that can still manifest themselves in a conception of personhood that focuses on who someone was rather than who they are now. Even people with advanced forms of dementia retain the capacity for intuitive thought and can communicate in non-verbal ways. We should not necessarily see their intuitive way of knowing as a deficient form of knowledge. Indeed, there are some things that people with dementia might see that others might not. Dementia advocate John Zeizel provides an excellent discussion of art therapy for people with dementia in his book I’m Still Here: A New Philosophy of Alzheimer’s Care. Zeizel notes how a person with dementia can sometimes see more deeply into a piece of art and point out things that others miss.

Nor should we see forms of non-verbal communication as deficient forms of communication. After all, some of the most profound human encounters do not involve words at all. There is something profound about an affectionate touch or a smile, or even just a friendly gaze from someone with dementia that we ought not disregard.

Ultimately, personhood has an ineffable character. Personhood is a mystery. When we are in the presence of mystery, we know that there is something much deeper present than what we can see or touch or smell. This, I submit, is how we are best to conceptualise the personhood of people with dementia. They are hidden but still there. We should always remember that the most profound aspects of personhood are those aspects that are not apparent; those aspects of personhood that are not manifested to the senses.

“An Attitude Towards a Soul”

We ought to approach all persons with a kind of reverence, knowing that we are in the presence of something mysterious. The mystery is arguably greater in the case of people living with dementia, given their circumstances and the at times devastating impacts of cognitive decline. Yet perhaps their personhood and mode of being is deserving of greater reverence for this very reason.

Ludwig Wittgenstein described the unique ways in which human beings relate to each other as “an attitude towards a soul”. This phrase provides a concise summary of the kind of attitude we ought to adopt toward people experiencing the effects of advanced dementia. We need to look beyond the external markers of personhood that we usually rely on, and instead focus on the inexhaustibly rich and unrepeatable character of the human soul.

This article has been republished with permission from ABC Religion & Ethics.

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