Co-designing technological solutions to loneliness with people with dementia or Parkinson's and their carers

Prevalence of loneliness is higher among people with dementia and Parkinson’s compared to people without these disorders. Neurodegenerative disorders can make standard social contact difficult, and the experience of loneliness is associated with declines in quality of life and physical and mental health. Higher rates of loneliness are also found among people with caring responsibilities. Loneliness is a subjective state in which a person perceives their social needs not to be met. Rather than a simple construct resulting from perceived low levels of communication, loneliness can occur when any one of an individual’s expectations for social relationships is not reached (for example, expectations for enjoyment, intimacy and support). Interventions to address loneliness have employed technology to enable communication between geographically separated people (e.g., online forums, video call platforms). However, evidence of their effectiveness in reducing loneliness is limited and of poor quality. Further, few interventions have been developed or tailored specifically for people with neurodegenerative disorders or their carers. To address loneliness among these groups and facilitate higher quality evidence gathering, there is a need for interventions that consider the complexity of loneliness and target the specific difficulties in making social contact that these groups face. In response, this research adopts a co-design approach to developing technologies to address loneliness among (a) people with dementia or Parkinson’s and (b) carers. Through a series of co-design workshops, we first look at experiences of loneliness, identify social needs, and gather perceptions of familiar and novel technologies. Then, employing creative techniques facilitated by an artist and critiquing low-fidelity designs and 3D-printed models, we iteratively develop prototype technologies for each group. Findings provide novel insights into the specific social needs and functional requirements among these groups, providing recommendations for future research alongside technological innovation.