The impact of autonomy at work on dementia family carers’ ability to manage care-related emergencies, and use technology to that end: semi-structured interviews in Scotland

Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future

“…In contrast, only a minority of participants described the usefulness of accessible “dementia clocks” and formal telecare and care-phone systems for monitoring and managing dementia symptoms and communication functions, despite a prime intended purpose to support dementia care. Participants’ tendency to gravitate towards mainstream ICT confirms earlier studies, which reported that the multifunctionality and practicality of smartphones, tablet computers and videoconferencing applications enabled carers to balance their personal needs with those related to the person they care for ( Caprioli et al, 2023 ; Spann et al, 2022 ; Sriram et al, 2021 ). Also observed, was how unpaid carers turned to an array of improvised mainstream ICT solutions because they were mostly unaware of accessible and formal alternatives ( Brookman et al, 2023 ; Gibson et al, 2019 ; Sriram et al, 2021 ).…”

“…In concordance with previous research, several participants mentioned their reliance on ICT to access dementia-care information and to facilitate connections with the person they cared for, formal care agencies, and their personal social networks (Gross et al, 2021;Núñez-Naveira et al, 2016). Participants also shed light on how their ICT-use supported IADLs such as shopping and banking, which increased sharply during the pandemic, mirroring similar discussions elsewhere (Chirico et al, 2022;Gibson et al, 2019;Hicks et al, 2023;Spann et al, 2022). Some further mentioned the convenience of using ICT for organising their personal routines, for administering financial and legal matters and for reducing travel to face-to-face appointments.…”

“…Volunteer organisations such as Carers UK (2023), Centre for Ageing Better (2024) and Age UK (2024) offer helpful information and digital skills training to unpaid carers and older people with access to the Internet. Nevertheless, our findings emphasise the need for early, and sustained, postdiagnosis dementia support (Gregg et al, 2021;Hicks et al, 2023), which includes signposting technologies that potentially provide personalised, timely assistance to families living with dementia in accordance with their changing circumstances and individual goals (Gross et al, 2021;Howard et al, 2020;Spann et al, 2022;Sriram et al, 2021). This also represents an opportunity for local governments to work jointly with the voluntary sector to provide comprehensive brokerage-type services about the range of ICT products and services available, and to offer bespoke training about how to identify, obtain and use the ICT that would optimally serve their circumstances (Gibson et al, 2019;Leslie et al, 2020).…”

“…Most participants further cited gaining peace of mind from using all types of ICT to support caregiving (Caprioli et al, 2023;Chirico et al, 2022;Gibson et al, 2015;Hicks et al, 2023;Knapp et al, 2015). Also in line with (Hicks et al, 2023), some commented that such reassurance also granted them brief moments of respite and independence (Hicks et al, 2023), while others mentioned that using tracking devices and smartphones for remote monitoring functions helped assuage concerns about undertaking activities away from the home, such as paid employment (Gibson et al, 2015;Spann et al, 2022).…”

“…Such approaches could improve the acceptability to carers of relevant ICT, sustain their use for a longer period, empower carers to develop new skills and support networks, and reduce the need for supplementary paid care services ( Gross et al, 2021 ; Hales & Fossey, 2018 ; Hicks et al, 2023 ; Howard et al, 2020 ; Núñez-Naveira et al, 2016 ; Rai et al, 2020 ; Wilson et al, 2024 ). Furthermore, expanded investment in collaborative user-developer research and knowledge sharing programmes could improve the understanding of how ICT can support care as well as contribute to carers’ continued participation in the economy, their social lives and civic society ( Spann et al, 2022 ), which is an important objective for society as a whole.…”