DemYouth

Abstract

There is a growing body of research examining the role of technology in supporting the care of-and relationships surrounding-people with dementia, yet little attention has been given to how this relates to younger family members. We conducted a qualitative study based on a series of 6 codesign workshops conducted with 14 young people who had personal experience with dementia. Initially, our workshops focused on understanding the difficulties that young people face when engaging, interacting and being with people with dementia. Initial analysis of workshop data informed the design of three digital tool concepts that were used as the basis for user enactment workshops. Our findings highlight the young people's desire to be more involved in their family discussions around dementia and a need for them to find new ways to connect with their loved ones with dementia. We offer a set of design considerations for future systems that support these needs and reflect on some of the complexities we faced around engaging young people in this difficult topic of discussion.

Ticket to Talk

“…In exploratory workshops with younger carers we discovered, despite the complexity of dementia, younger carers of people with dementia found the generational gap between themselves and older relatives to be the main barrier towards positive social interactions. In previously published work [36], we cite that younger carers are placed in positions where they need to drive conversations yet are not equipped with the knowledge of the person's past or are unfamiliar with an era their relative is most likely to remember. In cases such as this, supportive curation of meaningful media may aid and enrich social interaction.…”

“…This unavailability of LSWs exemplifies one of the younger people's biggest concerns: a lack of knowledge of someone with dementia's life history. This, in combination with the negative attitudes towards questions as conversational devices, makes instigating conversations daunting -echoing McNaney et al's co-design workshops [36]. Ticket to Talk helped overcome this obstacle by providing younger people with inspirations, enabling them to capture snapshots of an older person's past experiences, which were then used to stimulate conversations.…”

“…There is advice for communicating with family members with dementia [3,4,41], however these challenges are compounded for younger family members and young carers. Young people not only describe a lack of knowledge of the complications of dementia [36,59], but sometimes lack knowledge of the person affected by dementia's past experiences. Furthermore, a lack of shared interests further inhibits the instigation of conversation with people with dementia [36].…”

“…Young people not only describe a lack of knowledge of the complications of dementia [36,59], but sometimes lack knowledge of the person affected by dementia's past experiences. Furthermore, a lack of shared interests further inhibits the instigation of conversation with people with dementia [36]. Generational gaps between young people and people with dementia can form barriers, creating unfamiliarity with an older person's experiences and often forming the root of these conversational difficulties [45].…”

“…Generational gaps between young people and people with dementia can form barriers, creating unfamiliarity with an older person's experiences and often forming the root of these conversational difficulties [45]. Recent research in intergenerational interactions within dementia have shown that, along with the challenges of starting a conversation, young people can often be illequipped to effectively deal with the difficulties of the condition itself and managing unusual behaviours presented by dementia [21,36].…”