Communities of Memory; Life with Dementia

I've been reading John Swinton's book Dementia; Living in the Memories of God (Eerdmans  and SCM 2012) here. As Stanley Hauerwas says, Swinton is a premier pastoral theologian and his writings generally break new ground. In this, his latest book, he challenges as too limited current medical models for understanding dementia. What I particularly like is the way that he demonstrates how essential our thinking about what community is in shaping holistic approaches to this frightening disease. Having made the theological case for understanding that every person exists in the memory of God and is held there for all eternity, he goes on to describe the church as a 'living body of remembering friends' and says that we must 'create the types of relationships and communities that will allow us to....remember with a love that drives us into the presence of people with dementia.'


This is a major challenge to the churches and also to the way that we think about dementia and care for its sufferers as a society. Lovely as the sentiments in the book sound, I find myself wondering how effectively churches serve those who have attended for years but disappear as dementia takes hold. There is a natural fear which comes from really not understanding the disease and not feeling competent to communicate - the embarrassment when, on a Sunday morning Harry suddenly fails to recognise old friends and Betty begins to wander around during the service, interjecting with unintelligible, distressed-sounding exclamations. The monthly visit of the clergy or pastoral assistant to local nursing homes, though important in using the things like music, ritual and story that Swinton talks about, hardly seems adequate. I find myself wondering, too, how and if the NHS and social care agencies will ever be equal to the task of supporting and nursing the rising numbers of dementia sufferers. How can they do this in a society where the nuclear family is still, at least notionally, the basis of social structure? Even where people are living in or near families (and many are not) it is difficult for care givers to divide their energy between care for older family members, children and work without undermining their own strength to carry out the kind of 24 hour care, seven days a week that is required. Loneliness and isolation often overtake the care givers as much as the patient.

SCM Press here

Swinton's book is a huge challenge to our whole way of thinking about community. It forces us to think about how to generate sustained support across larger groups than the nuclear family. Just as mothers and fathers have usually formed support networks to care for the needs of very young children, so each of us, as we enter our final decades of life, will need to give attention to forming around us a community of care, knowing that some of us may need to receive more and others may give more; as with the care of children who all have different needs, this will not be a community of equally-weighted caring and this is why Swinton's starting point is so important - we are all, as we are and as we shall become, held as children of God, eternally precious. In the Kingdom of God, apparent givers become receivers and vice versa and, in fact, such distinctions and ways of thinking begin to break down.

Swinton's book is also a huge challenge to action. One of the things that people with dementia most need is time - every activity takes a great deal more time than normal, relies on the creation of mood and a good 'emotional temperature', and succeeds best where the care giver has had enough time over weeks and months to become familiar with and to the sufferer. This kind of care demands that much larger numbers of people get involved than is currently the case and that they stay committed, giving the months or years needed to remain involved with an individual and to see them through the different stages of their illness. In our transient society where so many of us are on the move so often and where everyone is 'pressed for time', the kind of environment that is needed by people with dementia is simply impossible to create and sustain without some kind of Copernican revolution in our values and ways of structuring life. A complete rethink is needed in what we value and how we show we value it. We need to provide training for volunteers and to pay those who work with dementia sufferers properly. Theirs is among the most demanding jobs I know, yet is is often done for very poor remuneration by people with little training and pitifully few resources. There is almost always a sense in nursing homes and day centres that more staff are needed and yet pressure to hurry is one of the most harmful things for those who are struggling with loss of memory, understanding and ability to do everyday tasks such as dressing and eating.

Just as the hospice movement has (with not complete success) influenced the way the whole health service thinks about terminal care, we need a fresh movement that generates new models of care for those whose memories and personalities fragment as they progress through the stages of dementia, often also suffering from other conditions which may or may not be recognised and treated. Can the churches help by beginning to explore ways for people who inhabit forgetfulness to be located in communities where they truly are not forgotten and where their continuity and memory is 'held' for them in practical as well as existential ways on a daily basis for as long as they live? 

For further information and sources of support see The Alzheimer's Society here