Communication can become challenging for people with dementia due to language, speech, discourse, and memory impairments. Although recent developments in Human-Computer Interaction have addressed some of these communication challenges, little is known about how they affect the self-presentation of people with dementia in everyday interactions. To understand this connection, we conducted interviews with sixteen people with dementia, six spouses, and fourteen formal caregivers. Our qualitative data revealed that people with dementia's presentation of competence, politeness, engagement, and reality are altered by communication challenges, which can impact their self-esteem, interactions, and relationships. Our study highlights the need for developing technologies that can enhance mutual understanding and acceptance of people with dementia's evolving presentation of self. Additionally, policy changes are required to reduce the stigma associated with communication challenges to foster social inclusion.
https://doi.org/10.1145/3613904.3642190
Reminiscence is known to play an important part in helping to mitigate the effects of dementia. Within the HCI community, work has typically focused on supporting reminiscence at an individual or social level but less attention has been given to supporting reminiscence in residential care settings. This lack of research became particularly apparent during the COVID pandemic when traditional forms of reminiscence involving physical artefacts and face-to-face interactions became especially challenging. In this paper we report on the design, development and evaluation of a reminiscence system, deployed in a residential care home over a two-year-period that included the pandemic. Mnemosyne comprises a pervasive display network and a browser-based application whose adoption and use we explored using a mixed methods approach. Our findings offer insights that will help shape the development and evaluation of future systems, particularly those that use pervasive displays to support unsupervised reminiscence.
https://doi.org/10.1145/3613904.3642783
Designing and using technologies to support Non-Pharmacological Interventions (NPI) for People with Dementia (PwD) has drawn increasing attention in HCI, with the potential expectations of higher user engagement and positive outcomes. Yet, technologies for NPI can only be valuable if practitioners successfully incorporate them into their ongoing intervention practices beyond a limited research period. Currently, we know little about how practitioners experience and perceive these technologies in practical NPI for PwD. In this paper, we investigate this question through observations of five in-person NPI activities and interviews with 11 therapists and 5 caregivers. Our findings elaborate the practical NPI workflow process and characteristics, and practitioners’ attitudes, experiences, and perceptions to technology-mediated NPI in practice. Generally, our participants emphasized practical NPI is a complex and professional practice, needing fine-grained, personalized evaluation and planning, and the practical executing process is situated, and multi-stakeholder collaborative. Yet, existing technologies often fail to consider these specific characteristics, which leads to limitations in practical effectiveness or sustainable use. Drawing on our findings, we discuss the possible implications for designing more useful and practical NPI intervention technologies.
https://doi.org/10.1145/3613904.3641977
Family caregivers of people living with dementia need easy-to-access strategies to manage changing care needs. Music therapy is valuable for supporting dementia care, but not always accessible. Technologies could potentially facilitate accessible, home-based music therapy support, but need to be carefully evaluated. We conducted an 8-week field trial of a prototype mobile application, MATCH, with caregivers and people living with dementia. MATCH contains training videos and suggested playlists showing how to use music for specific care needs. MATCH, and music streaming broadly, enabled caregivers to add new strategies to their care repertoire, addressing a range of care needs and enhancing the care relationship. To make MATCH work, however, caregivers needed to fit it into complex care environments and existing technologies. We argue that digital therapeutic tools need to be adopted by caregivers to fit their individual contexts, and this can challenge assumptions about how therapeutic tools will work in practice.
https://doi.org/10.1145/3613904.3642308
The transition from home to formal residential care is described as stressful and emotionally difficult for people with dementia and their informal caregivers. While HCI research investigated how technology supports people with dementia at home or in formal care, there still is a need to understand how technology can support care transitions. This paper presents a practice-informed approach to gather insights collaboratively between care professionals and HCI researchers. We interviewed 42 informal caregivers of people with dementia to uncover their experiences before, during, and after care transitions. Our findings reveal how informal caregivers were: 1) navigating hurdles of information on care transitions, 2) caught up in the evolving challenges of informal caregiving, and 3) shifting from uncertainty in decision-making to acceptance of admission. Next, we formulate six design opportunities to support transitions in dementia care and encourage HCI researchers to pursue a practice-informed approach to address societal challenges in dementia.
https://doi.org/10.1145/3613904.3642556