When my father died three years ago, the cause of death was given as prostate cancer. But this disease is so common in men aged over 80, and so rarely a cause of death, that it’s unlikely he would have died of it if he had not also been suffering from dementia. He simply didn’t do anything about his worsening prostate symptoms, or perhaps he didn’t even notice them. In this indirect sense, dementia can be a killer.
It is also increasingly common. We already know that the proportion of older people in the population is increasing: at the last census in 2001, 21% of us were aged 60 and over, and this will increase even more. Along with increased life expectancy, the incidence of dementia is also increasing. The Alzheimer’s Society estimates that there are currently nearly 700,000 people in the UK with dementia, most of them over 65. Nearly every day we hear scare stories about how caring for these patients will bankrupt the NHS. It’s said that every family will soon have some close relative who is a sufferer, though I suspect this may already be the case.
There are several reasons why dementia is so frightening. They include the fact that we know so little about its causes, there is no cure, and what treatments do exist are not very effective. There can hardly be anything more distressing than watching someone we love slowly going away from us, as memory fades, character and behaviour change, and the person whose love we have valued so much may no longer even recognise us.
The Church has not yet done a great deal of theology on the subject of dementia, yet I do believe the Gospel can offer some important helps and insights. God’s first word to us, in so many of the storms and troubles of life, is “Don’t be afraid.” Fear of a threat is often worse than the threat itself, and can certainly make us less able to face whatever it is we’re afraid of. In the case of dementia, it can often lead to late diagnosis, partly because we know there is no cure. This means we can find ourselves in a culture of denial in which the patient, their family, and not least the medical profession collude together to hide their heads in the sand, hoping the problem will go away. But if dementia is named as early as possible, there is more chance that some kind of treatment may help to delay its progress. More importantly, early diagnosis can help the sufferer and their loved ones to prepare for what’s to come, both emotionally, practically and spiritually, and to be able to share honestly the journey that lies ahead.
For a journey may be a helpful metaphor for what is going on. The idea of a dementia sufferer “going away” from us into some strange land, may be likened to the biblical stories of God’s people wandering in the wilderness, or carried off into exile. Those times were bitter experiences of confusion and dislocation, yet God constantly assured them by the prophets that he had not forsaken them, he was with them even in these times, caring for them and schooling them for the next stage of their pilgrimage.
This means that a person suffering from dementia does not cease to be a person. They are still someone created in the image of God, deserving of dignity and respect. To outward appearance, their personality may seem to have been changed or even lost, but we must certainly believe that the unique individual whom God willed into being is still present even when we seem to lose touch with them. God preserves the sufferer’s personality, and they will certainly share fully in the future hope of ‘the resurrection to eternal life’, just as we expect to. In the mean time they should not be ignored or written off, but should be included in the life of the family, the church and the community as much as possible.
There may be difficult decisions to be made. The dignity of the patient includes the need for good care and safety. In an ideal world, this might be provided in the home and the community, but in these days of widely scattered families, this is not always possible. The burden on a spouse who will also possibly be frail and elderly can become too great, and professional care provision may then become necessary. Patients’ families need to accept this, without feeling guilty.
The important thing is, through prayer and faith, to see dementia not as the defeat and destruction of human personhood, but as another experience through which we can meet God and know his faithfulness, and the truth of his promise never to fail us or forsake us.
See also Martin Goldsmith's article from Chrism
Published in the Marston Times, July 2008