Use of ICT by carers of people living with dementia (CareTek)

There is substantial evidence demonstrating the positive effects of using a range of digital services on the quality of life of unpaid carers and people living with dementia. A large proportion of the existing research centres on the feasibility and potential effects of new digital platforms and applications designed for dementia care. 

In contrast, this study explored the types of information communication technology (ICT) that unpaid carers use (or don’t use) in their daily lives, outside of a controlled research context.  Our study demonstrated the range of digital solutions unpaid carers use and highlights the gaps in awareness and formal signposting of ICTs that can support them with the care they provide.

• Project objectives

  The aim of this study was:

  • To demonstrate the patterns of ICT-use and non-use by unpaid carers of people living with dementia to understand which types of ICT are accessible and acceptable to them and to understand the barriers experienced by carers who do not use ICT.
  • To demonstrate the effects of ICT services on the health and wellbeing over time of carers and the people they care for and to explore the different types of technology that people living with dementia and their carers can benefit from over the course of the condition.
  • To disseminate the findings from the study and develop ideas, in collaboration with carers and other stakeholders, for a practical tool to assist local authorities, voluntary organisations and unpaid carers to assess the potential value of different types of ICT in helping those in caring roles to identify types of technologies available and to support carers in assessing their suitability to their personal situation.

  To note

  Significant challenges arose as a result of the COVID-19 pandemic.

  Four of the six focus group meetings with carers were held online over Zoom. The questionnaire and one-to-one interviews were delayed as the sampling for the DETERMIND study, the source of the sample for this study, was suspended between mid-March 2020 and March 2021.

  Recruitment for both the focus groups and survey was impacted. We sought the help of local authorities and carer organisations within local areas to recruit carers for the focus groups during the pandemic, but these organisations were extremely stretched and clearly had to prioritise other activities during the period of lockdowns.

  This improved somewhat once lockdowns were lifted but there were still substantial competing demands for local authorities. Once recruitment for the DETERMIND study was re-started after lockdowns ended, there was an appreciable period of time where recruitment for both DETERMIND and our study was slow. This was in large part due to the increased demands and stress experienced by carers even after lockdowns ended.

• How the research was conducted

  The research activities carried out in the project are as follows:

  1. Six focus group meetings with unpaid carers were completed. The findings from the focus groups were published in the journal Dementia in 2024. The findings addressed the first objective of identifying patterns of ICT-use by carers and the barriers experienced by non-users. The findings also informed some of the questions on the uses of technology employed in a questionnaire for unpaid carers of people with dementia.
  2. Questionnaires were sent to a sample of carers who participating in the DETERMIND study, led by Professor Sube Banerjee at Nottingham University. Questionnaire participants were also recruited from the NIHR’s Join Dementia Research website. A total of 172 questionnaires were completed and returned in the first round of the survey. Follow-up surveys were sent out in July 2024. The findings from the survey address the second objective of the study to demonstrate the effects of ICT use on the health and wellbeing of carers.
  3. Twenty-three one-to-one interviews were conducted with carers. The interview findings provide further insight on the impact of ICT- use on lives of carers, as well as explore the sources of support unpaid carers draw on to learn about – and adopt – digital tools that can support them and the person they care for. The interviews also address the objective of asking carers of their perception of how different types of ICT may, in future, be beneficial to them.

• Findings

  Key findings:

  1. Predominant Use of “Mainstream” Technology

  • Carers primarily rely on standard, everyday devices rather than specialist care technology.

  • Devices: Laptops and smartphones are the most common tools.

  • Applications: Internet-enabled apps, such as videoconferencing (Zoom/Teams) and social media platforms, are frequently used to support daily activities and the caring role.

  • Limited “Formal” Tech: While some used memory clocks or care-phone services for monitoring, usage of formal “telecare” or assistive technology specifically designed for dementia was less common than mainstream tools.

  2. Key Functions of ICT for Carers

  The study identified five main ways carers use technology:

  • Domestic Tasks: Online shopping, banking, and household management.

  • Care Management: Organising appointments, medication, and care schedules.

  • Communication: Reducing isolation by staying in touch with family and support networks.

  • Information/Education: Researching dementia symptoms and navigating the care system.

  • Monitoring: Using devices to ensure the safety of the person living with dementia.

  3. Barriers and Concerns

  • Infrastructure Issues: Carers expressed significant frustration with the poor ICT infrastructure in care homes, which often hinders communication with loved ones.

  • Accessing Formal Care: There is concern about the “digital by default” shift, where carers feel forced to use ICT to access essential health and social care services that were previously managed offline.

  • Privacy & Ethics: Some participants voiced concerns regarding reliance on monitoring technology.

  4. Ideas for the Future

  • Personalisation: Carers want more “personalised communication applications” that facilitate remote interaction and help promote the independence of the person living with dementia.

  • Co-design: The findings emphasise that technology developers and care providers need to work more closely with families to ensure tools actually align with the lived experiences of dementia care.

  The researchers concluded that while technology is a vital lifeline for many carers, its development is currently out of sync with their actual needs. They advocate for better cooperation between developers and the care sector to move away from “one-size-fits-all” solutions.

• Publications

  Damant J, Freddolino P, Dangoor M, Hu B, King D, Wittenberg R. Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future. Dementia. 2024;23(5):779-799. doi:10.1177/14713012241249793.

• Conference presentations

  Damant J, Freddolino P, King D, Wittenberg R, Dangoor M, Lorenz K, Hu B. Digital needs of unpaid carers of older people: A research agenda. International Society for Gerontechnology’s 12^th World Conference of Gerontology, 6-9 October 2020.

  King D, Damant J, Dangoor M, Freddolino P, Hu B, Lorenz-Dant K, Hooda M, Wittenberg R. CareTek: Use of ICT by carers of people living with dementia. NIHR School for Social Care Research Annual Conference, 26 April 2022.

  Damant J, King D, Dangoor M, Freddolino P, Hu B, Lorenz-Dant K, Wittenberg R. ICT and unpaid cares of people living with dementia – use, non-use and ideas for the future: Focus group findings. International Long-term Care Policy Network Conference, 7-10 September 2022.

  King D, Damant J, Dangoor M, Freddolino P, Hu B, Lorenz-Dant K, Hooda M, Wittenberg R. CareTek: Use of ICT by carers of people living with dementia. International Long-term Care Policy Network Conference, 7-10 September 2022.

  King D, Damant J, Dangoor M, Freddolino P, Hu B, Wittenberg. ICT use by unpaid carers of people living with dementia: Survey results. NIHR School for Social Care Research Annual Conference, 24-25 April 2024.

  Damant J, King D, Karagiannidou M, Dangoor M, Freddolino P, Hu B, Wittenberg R. Unpaid carers of people living with dementia: ICT-use, access to health and care services, sources of digital learning and support. International Society of Gerontechnology Conference, 2-4 September 2024.

  King D, Damant J, Dangoor M, Freddolino P, Hu B, Wittenberg. ICT use by unpaid carers of people living with dementia: Associations with carer well-being. International Long-term Care Policy Network Conference, 12-14 September 2024.