Bodleian

Creative Dementia Arts Network conference, Oxford

The journey to Oxford, for the Creative Dementia Arts Network conference, started in an appropriately creative way. On board the 08.55 from Didcot, I discovered a Pass It On book, left for the ‘next person’ to find, read and give away. I had heard much about this delightful exchange, known as a Book Swap, but this was the first time I’d had the good fortune to stumble upon such serendipitous gift.

There was also a serendipity to be found in many of the stories, research and experiences of dementia that were recounted at the Creative Dementia Arts Network conference, throughout the day in Oxford.

Dr Sebastian Crutch, Neuro-psychologist at UCL, gave a very moving presentation, which highlighted the complexity of dementia, showing short films of sufferers’ symptoms. These include problems of seeing where things are, difficulties in seeing what things are, and challenges in perceiving the whole picture, a coherence of vision. Other symptoms include mis-perceiving things and experiencing visual hallucinations. Having worked closely with an artist who was suffering from Alzheimer’s Disease (AD), Dr Crutch recognized that art can reflect AD-related perceptual impairment, and offer a powerful commentary on living with dementia. He concluded his presentation with some sobering comments and thought-provoking questions:

We have a 20% chance of suffering from dementia in the last five years of our lives. How are we going to live well with dementia? Where will our joy, hope and self-esteem come from? In Dr Crutch’s view, ‘art can offer these’.

Rachel Mortimer from Engage and Create asked her workshop audience, ‘What three things would you take with you, if you had to move into a care home tomorrow?’ This was challenging for everyone to answer, as well as being difficult to keep to just three items. Personal responses included handbags, music, iPads, wi-fi, books, pets, jewels, photographs, and perhaps most poignantly, someone suggested a mirror – ‘so that I don’t forget myself’. I wasn’t previously aware of the Alzheimer’s Society’s This Is Me document, a two page form designed to ‘help health and social care professionals build a better understanding of who the [new care home resident] really is’. I will shortly try to complete the form myself, with its daunting problem of how to summarise ‘My life so far (family, home, background and treasured possessions)’ in just four lines! I would also like to explore a response to the document in images and objects instead of words, and attempt to represent my own memories in a more tangible way.

During the lunch hour, I watched part of a really inspiring film called ‘I remember better when I paint’ which focused on a case study of arts in dementia care in the US.

The afternoon sessions then continued, with Dr Gill Windle sharing the story so far from the Dementia & Imagination project. The aim of this research is to explore ‘how the vision for dementia-supportive communities might benefit from creative activities. It will use visual arts as the catalyst for increasing connectivity and well-being, and challenging and changing the stigma associated with dementia.’

Lastly, I attended a workshop session about Entelechy Arts’ Little Boxes of Memories, a multi-sensory story-telling programme using touch, smell, sound and visual stimuli to share moments from people’s life stories. The ‘Little Boxes’ were small portable containers, and each demonstrated ways in which memory can often be experienced in a fragmented and dissonant way. These personal records were co-authored from conversations with dementia and stroke patients, and then developed by a designer who interpreted the stories using symbolic objects, translating them into the box forms.

At the end of the conference, I left feeling very inspired by the dedication and creativity of the people I met who are working with the arts in dementia care on a daily basis, and equally challenged by the complexity of the degenerative symptoms, which in turn, lead to ever-evolving needs of those who suffer from them. In an attempt to continue to understand better, to inform the design process and to stay in touch with this vital network of care support, I gathered a lot of information, to take away, read and share, much like the Book Swap which had started my day.

Just as memories can become fragmented over time and many recollections are required for coherence, so it struck me that all these different organisations, charities and individuals (represented in the image above by the numerous newsletters, cards and leaflets I collected) are all critically needed, in order to support a holistic and sustainable approach to dementia care.