THE prospect of dementia has the capacity to strike fear into people’s hearts like nothing else. A succession of surveys has shown that the nation is more frightened of developing dementia in old age than any other condition, including cancer. Furthermore, the language in which it is described is frequently apocalyptic: a “tsunami”, a “raw horror”, or a “living death”.
What is the source of this sense of horror in the face of dementia? It is undoubtedly, frequently, a terrible condition both for the person with dementia and loved ones: it can rob all parties of peace, dignity, enjoyment, and hope; it can crush the spirits of carers over months and years of struggle.
But it shares these characteristics with many other terminal conditions, and, like them, may often be made more tolerable with enough competent and sympathetic care. What, then, is uniquely horrifying about dementia?
A psychotherapist might diagnose society’s collective unease as evidence of a form of denial. By way of evidence, he or she might point to the frenzy with which people seize on potential cures; or point to the apparent readiness of leading figures (notoriously, Baroness Warnock in a 2008 statement) to contemplate assisted suicide for people with dementia as a sign of a desire to push it out of sight.
Such extreme reactions indicate that society is encountering an “existential threat”, something which is perceived as undermining people’s fundamental sense of security, identity, and place in the world.
SO, WHEN people think about dementia, what is the message that they cannot bear to hear? A key to the answer lies in reflecting on the sources of people’s sense of selfhood and identity as mediated through contemporary Western society.
It should be clear from the outset that the capacity to reason is fundamental: society is “hypercognitive” — “I think, therefore I am” has become a defining claim to selfhood.
Further reflection yields other similar statements that seem to lie at the core of people’s sense of self and self-worth: “I choose, therefore I am independent”; “I remember, therefore I am immortal”; or “I am useful, therefore I am significant.” All of these contribute to the way in which people construct the story of their self, as a thinking, remembering, choosing, efficient agent in the world. All of them are challenged and questioned by the experience of dementia.
Christians know that, at this point of challenge, people are prone to react with fear and violence; were it not so, there would never have been a crucifixion. Theologically, the message that people cannot bear to hear is the one of their own dependence, their individual unimportance when viewed as active, thinking agents in the world, along with their absolute importance when viewed as loved by God.
From this perspective, it is idolatry to say “I think, therefore I am”: we are because God wills it, whether we think or not. We do not choose, we are chosen; when we no longer remember, we are remembered.
If the experience of dementia shows us that the independent, hypercognitive self is an idol, it also shows us a way through. The experience of those who work closely with people with dementia is that, even when people are no longer communicating, or even recognisably aware of their surroundings, there are two ways in which it is possible to discern their place as people and as Christians.
The first is through “habits of the heart”: ingrained responses that people have built up over time, and which persist, even if they can no longer articulate the reasons for them.
For example, my mother continued to pray, even when it appeared that she could no longer formulate coherent thoughts; others talk of relatives in late-stage dementia who continue to radiate love and concern. If virtue is, as St Augustine said, “a good disposition reinforced by habit”, virtue can be witnessed at work even after cognitive choices have become impossible.
The second is the way in which an individual’s sense of self can be maintained and consciously supported by the people around them. It becomes clear that people neither begin life as individuals nor maintain independence on their own: as Ubuntu philosophy has it, “I am because we are.”
DEMENTIA forces a choice. Confronted by someone who can no longer think or remember clearly, who cannot contribute to the productivity of material society, will we accept him or her as a person? And, if we do, we must accept that everything we thought we knew about the value of people, about our own “identity” and place in the world, was tainted by a sort of idolatry.
We are being invited to conversion of life. The message that we cannot bear to hear is that we are more than we thought we were: we are not just thinking machines, but expressions of God’s will as part of a history and a society that sustain and mould us.
Dr Peter Kevern is Associate Professor in Values in Care at Staffordshire University. His main area of research is on spiritual issues raised by dementia. He is the keynote speaker at a conference, “Exploring God in Dementia: Theology, Spirituality, and Personhood”, in Exeter on 11 May. Bookings close at the end of this month. www.exeter.anglican.org/events/exploring-god-dementia-theology-spirituality-personhood/