Design Opportunities for Care Transitions in Dementia:Understanding Informal Caregivers’ Experiences Through a Practice-Informed Approach

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.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

Enriching everyday lived experiences in dementia care

Research in HCI is increasingly investigating the role of technology in supporting meaningful and social activities to enhance the lived experiences of people with dementia. However, to further enrich the daily experiences in care, more insight is needed into how technology can directly promote social participation and pleasurable experiences in everyday care situations. This paper discusses the deployment of VITA and SAM: two research products that address the social and emotional needs of residents in day-to-day dementia care. We report how both products offered aesthetic and sensory enrichment, created new experiences in the everyday, and were integrated into the care environment. Furthermore, we identify implications for design to provide: 1) aesthetics in care, 2) authentic experiences, 3) reinforcing everyday life, and 4) community-driven use in practice. We contribute to existing research by demonstrating how technology for dementia care can transcend instrumental use and culminate in warm-felt everyday experiences

Ageism in the discourse and practice of designing digital technology for older persons:A scoping review

Background and Objectives Involving older persons in the design process of digital technology (DT) promotes the development of technologies that are appealing, beneficial, and used. However, negative discourse on aging and ageism are potential underlying factors that could influence which and how DTs are designed and how older persons are involved in the design process. This scoping review investigates the explicit and implicit manifestations of ageism in the design process of DT. Research Design and Methods Seven databases were screened for studies reporting on the design of DT with older persons between January 2015 and January 2020. Data regarding study and DT characteristics, discourse about older persons, and their involvement in the design process were extracted, coded, and analyzed using critical discourse analysis. Results Sixty articles met the inclusion criteria and were included in the analysis. Various forms of exclusion of older persons from the design process were identified, such as no or low involvement, upper-age limits, and sample biases toward relatively “active,” healthy and “tech-savvy” older persons. Critical discourse analysis revealed the use of outdated language, stereotypical categorizations, and/or design decisions based on ageism in 71.7% of the studies. Discussion and Implications A discrepancy was found between an “ideal” discourse regarding the involvement of older persons throughout the design process and actual practice. Manifestations of ageism, errors, and biases of designing DT with older persons are discussed. This article calls for more authentic inclusion of older persons and higher awareness toward the implications of ageism in the design process of DT

Ticket to Talk: Supporting Conversation between Young People and People with Dementia through Digital Media

We explore the role of digital media in supporting intergenerational interactions between people with dementia and young people. Though meaningful social interaction is integral to quality of life in dementia, initiating conversation with a person with dementia can be challenging, especially for younger people who may lack knowledge of someone’s life history. This can be further compounded without a nuanced understanding of the nature of dementia, along with an unfamiliarity in leading and maintaining conversation. We designed a mobile application - Ticket to Talk - to support intergenerational interactions by encouraging young people to collect media relevant to individuals with dementia to use in conversations with people with dementia. We evaluated Ticket to Talk through trials with two families, a care home, and groups of older people. We highlight difficulties in using technologies such as this as a conversational tool, the value of digital media in supporting intergenerational interactions, and the potential to positively shape people with dementia’s agency in social settings

Setting up a living lab for innovation in the dementia care chain, a case study of the PhysiCAL Setting up a LivingLab for innovation in the dementia care chain, a case study of the PhysiCAL

Abstract: In this paper a LivingLab approach to design for and with people suffering from dementia and their caregivers is discussed. On top of the impaired user, a complex stakeholder network surrounds dementia care, showing two difficulties in innovation for dementia. Therefore innovation within the dementia healthcare chain requires an involvement of various stakeholders; the target group (people living with dementia), the dementia care providers and the potential business partners to achieve an accepted and viable proposition. In this paper an iterative process to do this is proposed and. A case study of an activity reminder calendar called the PhysiCAL explains the process and is used to assess the application. The results show that splitting up the complex network in separate parts, and involve these parts in the LivingLab approach is valuable for evaluating a proposition