Background: Approximately 700,000 unpaid carers spend over a billion hours per year to care for people living with dementia in the UK (Alzheimer's Society, 2021). Many carers face considerable daily challenges and experience mental and physical ill health as a result of caring (Carers UK, 2021). It is unclear how unpaid carers engage with information and communication technology (ICT) to support them and the people they care for.
Objectives: To identify the ICT that unpaid carers use to support their needs and those of the people they care for, the barriers that inhibit their ICT-use and ideas for ICT functions that could help them respond to the changing needs of a person living with dementia.
Methods: We gathered the views and experiences of 32 unpaid carers during six focus groups across four regions of England.
Results: Participants discussed their use of smartphones, smart speakers, cameras and tablet computers to simplify their daily lives, especially during the COVID-19 pandemic, for banking, shopping, and communicating with family, friends and care staff. Some carers employed the monitoring, reminiscence and reminder capabilities on smart devices, allowing them to carry out paid work whilst providing care and to obtain moments of respite, which helped them to attend to their own health and psychological needs.
Some carers used care-related devices and services including dementia clocks, finder services, door sensors and pendant alarms. For some, the devices gave participants "peace of mind" and permitted the people they care for to pursue their hobbies. Others stated that the devices were unusable and caused confusion, particularly for people in the advanced stages of dementia. Moreover, carers commented that the service fees of a single-function care-related ICT service were high compared to the cost of accessing similar applications from a multifunctional smartphone.
The main barriers to using ICT raised in the focus groups were low technical confidence, lack of informal support, and anxiety related to keeping up with rapid technological changes. Furthermore, carers supporting relatives in residential settings described the care homes' paltry broadband services and internet-enabled equipment, which severely limited their ability to support their family members.
Participants suggested that future ICT solutions need to be simplified, employ everyday language, and eliminate "menus" which they described as cumbersome and time consuming. Carers proposed developing interoperable television devices and services, remote assistance services for people living in care homes and passive two-way communication systems. Notably, participants expressed a need for bespoke training for "non-digital natives" and for developers to engage with people living with dementia and their carers at each stage of technology design and implementation, to arrive at ICTs that are accessible and acceptable to people with care needs.
Conclusions: The focus group findings will inform subsequent phases of the wider CareTek project (https://www.lse.ac.uk/cpec/research/caretek): assessing the effects of ICTs-use on the health and wellbeing of unpaid carers and people living with dementia. They will also contribute to work conceptualising a toolkit to help identify ICTs that meet the individual needs of people living with dementia and their carers.
Alzheimer's Society (2021). Carers UK's "State of Caring 2021' report - Alzheimer's Society responds. Available at https://www.alzheimers.org.uk/news/2021-11-03/carers-uks-state-caring-2021-report-alzheimers-society-responds, accessed on Feb 5, 2022.
Carers UK (2021) State of Caring 2021: A snapshot of unpaid care in the UK. Available at https://www.carersuk.org/images/Research/CUK_State_of_Caring_2021_report_web.pdf?_ga=2.106407875.1344369548.1649760239-849360289.1644072463&_gac=1.128464126.1649760239.Cj0KCQjwxtSSBhDYARIsAEn0thTsZ1wb2KqeMp4Ace017QvmjgEtaB1AWpsxH3i7Eki3l1M_lEjRhcEaArsnEALw_wcB, accessed on April 12, 2022.