Do you ever think about dying? Exploring acceptance, grief and togetherness through the mediation of technologies while living with dementia

In this abstract we report the results of a workshop conducted with researchers in the field of technology and human-computer interaction for people with dementia. The workshop revolved around the grief process when the diagnosis is received, focusing on how different people touched by it (the person with dementia, family, friends, others) respond to and address the illness. In the session, we explored the design space surrounding the diagnosis of dementia and the role that technologies can have in supporting the stakeholders in the processes of acceptance, pre-grief, preparedness and bereavement.

By involving researchers that focus on the design of products acting as mediators between the person with dementia and their (in)formal caregivers, we aimed to explore how through the design and the aesthetics of products, services, tools, and environments people can address uncomfortable conversations and sensitive topics related to preconceptions and stereotypes of dementia. The activity was conducted with in mind the ethical values behind the conception of products, services, tools, and environments for people with dementia, aiming to provide a just and fair representation beyond common misconceptions. Within the workshop, the taboos accompanying the emerging grief connected to the diagnosis and the following stages of dementia (e.g., grief following loss of social life, grief following loss of identity etc.) have been discussed.

In the context of this conference, we want to report some findings and conversation that emerged from the workshop, resulting in an extensive mapping of the stakeholders involved in different phases of the journey with dementia and the relational aspects connecting them in each phase. Eventually, we will outline a series of guidelines for the design of technologies supporting the acceptance and grieving of the person with dementia while engaging the pre-grieving loved ones in a process of preparedness towards, hopefully, a healthier grieving process.