Have you noticed how certain medical conditions are attached to people like labels to a parcel? Once attached, they become irremovable, regardless of how well the person is at a particular moment in time. The label becomes the person, and the personality that was once the person becomes obscured and ultimately lost behind that label. The condition may contribute to that process. However, there is often an unwitting desire to speed the process along; emphasising the negative aspects until the last semblance of the original character is buried beneath an inundation of symptoms and signs.
Dementia is like that. How often have you heard an introduction along the lines of ‘this is my husband; he has dementia’, a statement made as though the spousal position is somehow irrefutably entwined with the condition of dementia. You don’t tend to hear the phrase ‘this is my husband; he has osteoarthritic knees’, or ‘this is my wife; she has irritable bowel syndrome’. So why do we do it with conditions such as dementia?
The answer may reside in the fact that dementia affects the person’s mind, and that, of course, is where we assign the residence of a person’s character. Mental illness often has a similar fate; in particular schizophrenia or bipolar disorder (manic depression). Despite the fact that both of these conditions can have long periods of remission, with no symptoms of ill-health being exhibited by the patient (is someone still a patient if they are actually well?), once applied, the label remains; the person has become dehumanised and has metamorphosed into the condition. Kafka would be proud.
It was the realisation of how unfair this is on the person concerned that made me start this article. Like many conditions of the mind, dementia is not in itself a diagnosis, but a term describing a collection of symptoms (confusion, memory loss, loss of identity, the inability to recognise other people, disorientation in time and place, disinhibition and so forth). There are many causes of dementia (just as there are many causes of a painful knee, for example), and not every type of dementia travels the same path, or takes that path at the same speed. Equally, there can be periods of great lucidity, where the mind of the person clears and conversation is relevant and accurate.
The theologian, John Swinton, has written a book on this subject. Called ‘Dementia: Living in the Memories of God’, it is an insightful attempt to readdress the current imbalance in the way many of us view dementia. He argues for a resetting of our perspective and for the need to see beyond or behind the condition in an effort to preserve the spirit of the person captured behind the illness. He maintains that the person’s identity is not irredeemably lost, but struggling to exhibit itself. The task of the relative or friend is to preserve the personhood of the person affected, and not strip him or her of the last vestige of that which makes us human. ‘This is my husband’, is all we need to know as an introduction. Ignore the distracting label, but please do tell us about the identity of the person who, beyond all else, remains your husband and a human being. As one might offer an arm to support a person with arthritis, let us also give a voice to the identity of our relative or friend with dementia. Let their identity live on, safe in the hands of a loved one.
First published in the Scunthorpe Telegraph, 18 April 2013
© Copyright Robert M Jaggs-Fowler 2013