Conversations at the edge of play: media, communication and cultural intersections with dementia

Gail Kenning, Cathy Treadaway
2017 Continuum. Journal of Media and Cultural Studies  
The mean age of the global population is increasing significantly. Incidences of dementia are also predicted to rise and this will impact society as a whole as well as individuals, who will find they are primary carers for one or more family members with the disease. Dementia carries a stigma and is not openly discussed. Discourse continues to be led by bio-medical approaches that focus on the need to 'fight' the disease and often leaves individuals feeling ill prepared and powerless to act.
more » ... owerless to act. This paper reports on an innovative approach that engages with material culture production; it uses textiles as media to encourage people to share their personal experiences of dementia. The pilot project involved the general public in the making of bespoke sensory objects to promote 'in the moment pleasure' for people with later stage dementia, while facilitating an exchange of information about dementia both formally and informally with participants engaged in the making process. The study found that while participants' individual knowledge and understanding of dementia varied significantly, each participant was able to contribute, share their knowledge and become empowered through activity. (6400 words) 'Lucy' suggested that perhaps the blue fabric she was using would remind 'Granny' of the sea. In memoria Children frequently left messages in pockets they made: "Remember, remember", "Please get well", "Down with dementia", "Love you". However, it was not only children that left notes in memoria. A young woman, the first to the table on the first day of the 'funshop', immediately sat down and began to make in silence. She made a well-crafted pocket and placed it on the wall. She explained it was for her father who had died a couple of years ago after living with dementia. Inside the pocket she had placed a paper blower with a feather attached and a note saying, "this would have made dad laugh!" Discussion The Hand i Pockets 'funshop' at the Mini Maker Faire provided an alternative model for communication to the hierarchical dissemination of information that remains the primary means of communication in relation to ageing and dementia. Noticeably, the form of engagement and the environment shaped the content of the communication. For example, while public discourse relating to ageing and dementia all too frequently focuses on deficit and loss, the focus on 'fun', and making sensory objects to promote fun meant throughout the research project conversations were primarily focussed on possibility and potential and what could be done. There was little reference made to medical or clinical understandings of dementia or discussion associated with the medical views or the 'medical gaze', and only minimal use was made of the information brochures and flyers supplied by Alzheimer's. But, this is not to suggest that discussion was shallow inaccurate or misleading; the Counsellor from Alzheimer's was busy throughout the day answering questions and talking about the impact of dementia. For the most part discussion was experiential and involved personal embodied
doi:10.1080/10304312.2017.1370075 fatcat:7pc5tym57zdcxnbxpnpmd3znja