This article is written in honour of Dementia Awareness Week.
How can the interior experience of Alzheimer’s be communicated to the outside world? What can that communication convey about the suffering of an Alzheimer’s patient? These questions were explored at “Impacting on Alzheimer’s Disease”, a compelling cross-disciplinary discussion chaired by art historian Marius Kwint and held at GV Art, London on 17th May. The springboard for the event was the current exhibition at GV Art, a retrospective of the work of William Utermohlen(1933-2007), himself diagnosed with Alzheimer’s in 1995 and who continued, with encouragement from family and clinicians, to draw and paint after his diagnosis.
The three speakers on the panel spoke movingly about how a diagnosis of Alzheimer’s and its ineluctable progression impacts upon the sufferer’s mental, psychological, and physical well-being. These terrible burdens of dementia will be all too familiar to those who have watched friends or loved ones suffer from the disease; for those of us who have been fortunate not to be exposed to them, it was a powerful eye-opener.
Dr. Sebastian Crutch, clinical and research psychologist and a leading expert on rare forms of dementia, offered fascinating insights into how dementia can affect visual perception. In a revealing comparison of figure-copying drawings by stroke victims and Alzheimer patients, Dr. Crutch showed how the former tend to simplify a copied drawing whilst Alzheimer patients demonstrate problems recognizing spatial arrangement, often neglecting parts of the image they are copying altogether. Using some painfully poignant video footage of dementia sufferers, he showed how the disease adversely impacts on visual-spatial skills – the ability to see where objects are, to identify faces and objects, and to comprehend and interpret a picture as a whole. His presentation suggestively indicated how some of William Utermohlen’s post-diagnosis work could be seen to illustrate some of the cognitive impact of Alzheimer’s.
Dr. Rachel Davenhill, Director of Age Matters, shed light on the prevalence of depression amongst Alzheimer’s sufferers (and their carers) and how this terrible additional burden may be alleviated. She conjured up the unimaginable horror of a patient in early stages, perhaps pre-diagnosis, knowing that there is something terribly wrong but being unable to articulate it to others or to oneself. William Utermohlen had desperately tried to preserve an ordinary life when he had this intimation; though he continued to visit his Old Street studio, it was only a year later, when his wife Patricia visited him there, that she discovered him surrounded by empty canvasses, unable to work. Dr. Davenhill talked movingly about the need for an ‘accompanying spirit’ – who, in William Utermohlen’s case, was his wife Patricia and his clinicians – and how such a spirit, whether found within the family or amongst professional carers, can help depressed sufferers find a way out of their isolation. She emphasized the importance of the patient communicating feelings about their illness, whether through talking therapies or, as William Utermohlen did, through art. Patricia Utermohlen revealed how essential the rebirth of his artistic practice was to her husband after his diagnosis. He felt he was doing something important and valuable, and this was critical in coping with the burden of his disease. It was his only method of conveying his experience; he didn’t express it in any verbal means. As Patricia so poignantly observed; “He didn’t die until 2007; but he died in 2000, when he couldn’t draw anymore.”
Andrew Balfour, Director of Clinical Services at the Tavistock Centre for Couple Relationships and a staff associate with Age Matters, continued the theme of communication by underlining the need to learn the most effective way of listening to dementia sufferers. He painted a depressing picture of patients, whether in care homes or hospital, isolated and alone, unheard by the short-staffed institutions in which they become a prisoner of their own inability to communicate, their individuality lost. He underlined the extreme difficulty of getting in contact with a dementia patient, and that without training many nurses and carers simply don’t know how to unlock the increasingly mute patients in their care. He outlined his research into the levels of awareness of dementia sufferers and suggested that engaging with patients, allowing them to communicate in whichever way is open to them, may slow their decline and stave off the insidious impact of depression.
[Art] cannot be used as empirical evidence about factual truths about Alzheimer’s, but it can convey the emotional truth about the disease
The evening made clear the importance of communicating the experience of an Alzheimer’s sufferer from within to the outside world; it is critical to the well-being of the patient as well as to his circle of family and carers. In William Utermohlen’s case, this communication has also provided for his audience a rich and emotionally compelling body of artwork. From my perspective as an art-historian I had concerns about over-analyzing his art; indeed, I have felt uncomfortable about placing it within an art-historical context at all. I was reassured by Dr. Crutch’s view, that it is valid to see in William Utermohlen’s post-diagnosis work both his emotional experiential perspective as much as a neuro-psychological one; the mere fact of his painting demonstrated his will to express something specific about his emotional state, his experience of his symptoms and his reaction to them. Dr. Crutch emphasized that Utermohlen’s work – and art in general – cannot be used as empirical evidence about factual truths about Alzheimer’s, but it can convey the emotional truth about the disease. Ultimately, anyone who has seen Utermohlen’s post-diagnosis works could not fail to be moved by the depiction of the artist’s anguish and despair, not to mention its witnessing of the physical/cognitive deterioration wrought by the disease.
Despite the evident distress wrought by dementia, the evening’s emphasis on the importance of communication and emotional relationships gave some encouragement to the possibility of alleviating the worst of its emotional impact, while a cure or even disease-modifying treatment remains an as yet unfulfilled ambition.