Is there anybody there?
Can we remember those who forget?
We human beings deal with our fears in a variety of ways. Often our response to certain types of illness is shaped by ignorance and prejudice. A historical overview of religion reflects our ambivalent relationship with illness. Consider how we treated the insane in asylums in the 19th century. Our fear sent the insane into institutions on the edge of our communities. Reflect on the Church’s response to HIV disease in the late 20th century. We find it hard to engage with those who are different. We fear contagion. It has taken a long time for us to face the cruel reality of cancer and discover a humane way of engaging the whole person and their pain. We do not like to think of ourselves as vulnerable, as potentially ill.
Another challenge faces us. They call it the long goodbye. If each of us were ever in the situation of being able to choose the shape of our diminishments then a physical one might be easier to bear than a mental one. Dementia strikes fear in people’s hearts and with good reason.
The term ‘dementia’ is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. There are over a hundred different types of dementia with a range of causes (see www.alzheimers.org.uk for a clear description of definitions). Diagnosing dementia is often difficult but the steady progression of memory loss can be devastating for all those involved in care. There are currently 700,000 people living with dementia in the UK which is likely to rise to over a million by the year 2025. 60,000 deaths a year are attributable to dementia – in short, the longer we live, the more likely we are to develop some form of memory loss. The financial cost of dementia to the UK is over £17 billion a year.
There is no cure. Current treatments alleviate symptoms temporarily at best. Caring for someone with dementia is one of the toughest jobs in the world. It is stressful, physically and emotionally draining and very expensive.
It is difficult to bring these facts home into a place where we can be challenged by the implications of all this for us and the shape of our communities. There may be people you know that have been affected by this disease. Last December, best selling novelist, Terry Pratchett was diagnosed with early onset Alzheimer’s disease. He said : ‘It’s a strange life when you ‘come out’ – people get embarrassed, lower their voices and get lost for words…..What is needed is will and determination. The first step is to talk about dementia because it’s a fact, well enshrined in folklore that if we are to kill the demon then first we have to say its name’ (Interview with BBC News 10th June 2008).
This reinforces surveys that have indicated that those living with dementia ‘suffer stigma’. Some even commented that neighbours crossing the street to avoid them. The report also blamed ‘dismissive, unhelpful or uniformed responses from GP’s’ for compounding the problems faced by patients seeking a diagnosis. (See Dementia: Out of the Shadows published by the Alzheimer’s Society October 7th 2008)
The fear and stigma that surrounds dementia is bound up with our inability to accept and engage with age and ageing in ourselves and others. The Church reflects this ageism (see Wake up to your Age Church Times 13 July 2007) where little thought or priority is given to older people and their needs. What is needed is some investment in national awareness campaigns. Government, charities, Churches, services and employers need to work together to make this a reality. Theses agencies could do more to work together to offer support, information and advice. The human and economic cost of dementia cannot be ignored – if we live to 65, one in three of us will die of dementia.
There are many innovations in this area of care that challenge us to develop better practice. Oliver James, a leading psychologist who has spent most of his working life looking into how we bring up our children. But thanks to his mother in law, Penny Garner, he is now on a mission to show that the world needs to change its approach to looking after older people living with dementia. In his latest book Contented Dementia (Vermilion 2008) the reader is taken into the world of the self and the way this disease strips away dignity, memory and hope. Dementia need not, he shows be a never ending nightmare of frustration, anger and embarrassment.
In an approach that puts the person at the heart of care through sensitive and radical listening James shows that it is possible to unlock isolation and distress.
It is often best to retain some of the security of a familiar environment. A memory box with that contains meaningful items that say something about that individual can help those with memory loss. It can be a starting point for conversation and a challenge to carers to see an older person’s individuality. A packet of seeds is a simple starting point for memories about gardens and gardening.
Memories from the past can remain largely undamaged and intact – and these can be released through attentive support and friendship. Released form some of the burden of having to store new information when communicating with them, the person living with dementia can find satisfaction and contentment. Conversations need not to be long or rushed; ask only one question at a time; key into a person’s feelings; allow time for a person to reply and don’t be afraid of silence all help to establish good communication.
James argues forcibly that there are alternatives to the use of anti- psychotic drugs.
‘If the person is comfortable with their familiar old narrative, then they are much more likely to see the necessity for eating, sleeping, going to the toilet, and other vital functions that can be so difficult for carers to orchestrate.’
The book is a radical plea to move beyond an approach that is dependent upon medicine and, as James argues, leaves people befuddled and doped. This approach to the person and memory seems so simple and obvious but it has attracted some opposition. Graham Stokes, head of mental health at BUPA warns his readers not to be seduced by the simplicity of the model; ‘it is just one psychosocial intervention in the therapeutic toolkit’.
None of us should content with the status quo where a reductionist medical model of care has the potential to overlook the person in the condition. People living with dementia need to have their condition reconstructed. If we redefine the problem of time, memory and history for the person then new and different solutions can emerge. Good communication and compassionate care are the heart of this approach. Let the debate continue if it raises the profile of dementia and engages the public in debate about the shape and resourcing of care.
Before Dame Cicely Saunders died she wrote to me about my work in old age care challenging me to see this work as pioneering as hers in Hospice care during the 1960s and onwards. I hope the Church will play its part in the challenges and opportunities shared through those who live in the complex land between remembering and forgetting.
(This article first appeared in The Church Times on 21st November 2008)