STUDIES show that most people fear dementia more than they fear cancer. This is partly because so much about dementia is unknown, and there is no treatment, while cancer research has produced a wealth of information and tried-and-tested therapies.
But the true horror of dementia is about its effects on the personality: the loss of memory that leads so often inexorably to a loss of a sense of self. People with dementia fade away before they die, often experiencing severe confusion and distress.
The theological issue of dementia is to do with the meaning of what it is to be a person. We learn from scripture that humanity is in the image of God. This is usually interpreted to mean that each individual bears God’s image in a unique and personal way.
But this approach, valuable as it is, does not perhaps give enough weight to the way in which our personalities are given both by our genetic history, and by our interaction with others and our environment throughout our lives. When a person is diagnosed with dementia, and no longer has access to the narrative of their life, we experience them as losing their personhood.
There is some evidence that other cultures deal with this process differently. Where the elderly are valued, where there is a genuine sense that the individual is shaped by a whole community, a person with dementia is still held by others’ memories and shared histories. They still belong, whether they are aware of it or not. In fact, their individual awareness is not the most important factor: belonging comes first.
Theologians from the Orthodox world have often expressed criticism of the individualism of the West. They argue that the person, in Christian understanding, is always more than the individual. The very notion of person implies relationship with others. To be in God’s image is be fully personal, bearing in mind that God’s “personality” is both one and threefold; never individual. The Christian journey is not, as Plotinus thought, a flight of the alone to the alone. It is a pilgrimage in company in which we learn to bear each other’s burdens.
If this is true, we do not stop being the persons that we are just because we have lost our memories. People with dementia often remain capable of moments of repose, delight, and pleasure in the company of others.
What often helps is music, and long-ago memorised words. We have done people with dementia no service in demanding endless variations in liturgy, ensuring that we remember nothing.
The human person on their pilgrimage through time deserves better. We need to hold them as we might hope to be held.
Dementia Awareness Week ends tomorrow. www.alzheimers.org.uk/info/20167/dementia_awareness_week