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

Abstract

Objectives Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer. Methods Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of – and barriers to – using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education). Results Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants’ ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia’s independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes. Conclusions Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances.

A systematic review of digital access to post‐diagnostic health and social care services for dementia

“…Across interviews with nine carers, participants emphasised that digital peer support helped them to maintain their relationship with their cared for person, demonstrate and acknowledge compassion from others, take time to have a personal life and balance this alongside caring, as well as being cognisant of the role they are in and maintaining positivity in it. In a study exploring unpaid dementia carers' experiences of using technology in caring, Damant et al 92 demonstrated carers used social media and videoconferencing or peer support, and daily activities in their personal life, and in supporting them in caring. However, participants emphasised the issues of reliance on technology, and the barriers in terms of access and cost of not only the enabling technology, but in the running costs.…”