Towards narrative-based technology to assist people with dementia when going out

Abstract: This paper introduces an experimental design for collecting narratives and utilization of them based on person-centered care (Kitwood et al, 1992) as a preliminary study toward using narratives in technology to assist people with dementia when going out. One of the issues in dementia care is balancing risk management and independent living support. The act of going out is important for independent living, but dementia increases risks when going out, such as inability to return home by oneself. A typical behavior of people with dementia is to try to get home even though they are home, then go out and get lost. They may recognize other places where they have lived in the past as their current home. In other words, they may recognize their past selves as their current selves. Although there are previous studies on analyzing wayfinding by people with dementia (Sheehan et al, 2006), there is no research that collects and uses narratives in technology. We focused on organizing narratives by era on the basis of changes in their living environments in the past, and using these to assist them when they go out.We propose a narrative framework that organizes the location of one’s home in each era, the people and things that were cherished at the time, and episodes. Understanding the location of people with dementia’s past home and the things they cherished can help predict the purpose and destination of their outings. However, such narrative components are not necessarily known and need to be obtained from people with dementia, their family, or care workers. One effective way to get people with dementia to talk about the past episodes is to have conversations while walking around familiar places.For the safety of the “conversations while walking” experiments, we identified various risks when people with dementia go out. The identification was conducted through an assessment by three dementia care experts working at a nursing care facility (3rd, 4th and 5th authors of this paper). We assessed four categories: general risks for the elderly, risks specific to people with dementia, risks to themselves while going out, and risks to themselves after returning home. The number of risks extracted in each category were 9, 10, 8, and 8, respectively. For example, the roadside risk was identified as one of the general risks for the elderly. The cognition for the current situation was identified as one of the risks specific to people with dementia. We also conducted a risk check using Google Street View and an experimenter walking on-site to confirm the expected route in preparation for the outing experiment.The narratives collected in future experiments are planned for use in assistive technologies such as robots. As principles in designing patient-technology and care-worker-technology interactions, we consider the five petals of person-centered care: comfort, attachment, inclusion, occupation, and identity, in addition to human dignity and support for independent living. Future work will include conducting narrative collection experiments and analyzing results as well as detailed interaction design. Kitwood, T. and Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being, Ageing and Society, Vol.12, No.3, pp.269-287.Sheehan, B., Burton, E. and Mitchell, L. (2006). Outdoor wayfinding in dementia. Dementia: The International Journal of Social Research and Practice. Vol.5, pp.271-281.

Keywords: Narrative, dementia, person-centered care

DOI: 10.54941/ahfe1005527

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