Participatory design-based requirements elicitation involving people living with dementia towards a home-based platform to monitor emotional wellbeing

We are living in an ageing population with an escalation in chronic illnesses including dementia and other age related diseases. People living with dementia often continue to live at home and are supported by caregivers and next of kin. It is often important to monitor the wellbeing of people living with dementia in order to measure their level of independence and to provide proper support at the time of need as well as supporting their quality of life. Some researchers have focused on monitoring physical wellbeing and activities of daily living (ADL). However, there has been a paucity of research focussed on monitoring mood, affect and the emotional wellbeing of people living with dementia, despite these people experiencing frustration, agitation, depression and social isolation to name but a few known effects. As a result, the SenseCare project aims to build an affective computing platform that uses sensors placed in the home environment to monitor moods, affect and the emotional wellbeing of people living with dementia. This platform is being iteratively designed and will likely use plug-n-play sensors such as passive infrared, wearables and camera technologies to infer emotions from facial expressions, voice intonations and physical behaviour and other modalities. However, it is important to interact iteratively with people living with dementia and their caregivers in order to understand their profound needs. In this study, we report on two focus groups that were conducted to elicit user stories and eventual requirements for the SenseCare platform. Since participatory design involving people living with dementia could bring about unique challenges, we adopted a dyad approach where a caregiver and the person living with dementia participate together in the focus group. This ensures that their needs are fully represented and that consent is fully transparent. In this paper, we report the personal stories elicited during these discussions which will ultimately inform the implementation of the SenseCare platform.