Dates: 1 October 2020 - 31 December 2022
Funder: NIHR School for Social Care Research
Project description
Dementia has a significant impact on the health and wellbeing of people with the condition and those who support them. Family and unpaid carers of people living with dementia often experience poor physical and mental health both because of the high number of hours of care that they provide and from witnessing the cognitive decline of those that they care for.
The current body of evidence points to the substantial potential of information communication technology (ICT) in supporting the complex daily lives of carers of people living with dementia. Devices and communication networks including the internet, computers, and mobile phones with digital applications (apps) can assist carers and potentially reduce the challenges associated with caring. Many carers regularly use some ICT applications, such as internet searches for information relevant to caring. Devices specifically designed to support caring, such as monitoring sensors or memory and visual communication aids can also assist with caring, though use of these devices is less widespread.
This project aims to identify patterns of ICT use (and non-use) by unpaid adult carers of people living with dementia in order then to evaluate effects of carers’ ICT use on their own health and wellbeing, on the wellbeing of the people that they care for, and on the extent to which they are supported in their provision of care. Based on these findings, CareTek will develop ideas for an evaluation instrument that will assist carers, local authorities, and voluntary organisations in assessing the suitability of different technologies for supporting carers according to their personal needs and circumstances.
Methods
This mixed-method study is organised into three work streams. In collaboration with six local authorities and local voluntary organisations, work stream 1 will carry out a workshop and a series of focus groups (with carers who both do and do not use use ICT) in order to explore how useful ICT can be in supporting care and what barriers prevent carers from accessing and using ICT. Findings from the discussions will be categorised into different types of ICT according to technology function and care activities they support.
Work stream 2 will link with the DETERMIND study, which will survey carers of people living with dementia to find out what technology they use, their reasons for using technology, and the ways in which they find technology helpful (or unhelpful). Interviews with around 30 carers from the DETERMIND study will look at their experiences of ICT in greater depth. Quantitative and qualitative analyses will assess changes in quality of life for carers and the people they care for in relation to different frequencies and types of ICT use.
Work stream 3 involves a series of dissemination and consultation events on the findings from work streams 1 and 2. The CPEC CareTek team will also work with collaborating project partners to begin developing an assessment toolkit that will help carers, local authorities, and voluntary organisations make decisions around the types of ICT that could be most useful to individual carers’ needs.
Further project information
Principal Investigator: Derek King
CPEC Research team: Derek King, Jacqueline Damant, Margaret Dangoor, Bo Hu, Klara Lorenz-Dant, Raphael Wittenberg, Paul Freddolino
Collaborators: Six local authorities, including: Durham County Council, Essex County Council, Leeds City Council, Portsmouth City Council, Richmond and Wandsworth Councils
Region: UK
Countries: England
Keywords: dementia, technology, outcomes, carers, people living with dementia