About Us
The IDEAL research programme looks at ways of improving the experience of living with dementia. The team’s main base is at the University of Exeter, but there are researchers in Bradford, London, Manchester, Newcastle and Swansea too. An involvement group
of people with dementia and carers, the ALWAYs group, advises on the research.
For this toolkit, 8 members of the ALWAYs group joined the co-production team:
Allison, Chris, David, Jacqui, Jane, Julia, Keith and Monica.
The co-production team of people with dementia, carers and researchers met
regularly over an extended period to discuss ideas, feedback on design choices
and much more. Facilitated by Rachael Litherland of Innovations in Dementia,
this group has co-created the toolkit.
The team
The Living with Dementia Toolkit is the result of:
- the research of the IDEAL programme
- co-production work with an incredible involvement group of people with dementia and carers
We are extremely grateful to the ESRC for funding the work specific to creating this toolkit.
Read on to find out more about how we have combined these two! You can also watch the video to find out what it meant to participate in co-producing this toolkit.
Click on the image below to watch the video. It is 9 1/2 minutes long.
The research
The IDEAL research project has been finding out about what helps people to ‘live well’ with dementia since 2014. We do this by asking people with dementia and carers about different aspects of their lives. We used to see people in person to talk about this. The COVID-19 pandemic changed how we work. We had to speak to people on the telephone or via Zoom instead. This toolkit responds to what we heard from people about their experiences during the COVID-19 pandemic and what they would find useful.
Our COVID-19 work is called the INCLUDE project. We spoke to 172 people with dementia and 288 carers during the pandemic. The quotations you see throughout the website are from real people with dementia and carers who we spoke to during the COVID-19 pandemic.
The five themes of this toolkit are the five areas that our research shows affect your ability to live a life you feel is good. What it means to ‘live well’ is different for each person. This toolkit offers you a variety of options so that you can choose what you’re interested in finding out more about.
To find out lots more about our research findings visit www.idealproject.org.uk.
This toolkit is an output of the INCLUDE project.
‘Identifying and mitigating the individual and dyadic impact of COVID19 and life
under physical distancing on people with dementia and carers (INCLUDE)’
Investigators: Clare, L., Victor, C., Matthews F., Quinn, C., Hillman, A., Burns, A., Allan, L., Litherland, R., Martyr, A., Collins, R., & Pentecost, C. (2020-2021). Funded by the Economic and Social Research Council ES/V004964/1.
INCLUDE is part of the larger IDEAL Programme of research comprising
‘Improving the experience of Dementia and Enhancing Active Life: living well with
dementia: the IDEAL study’. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J. Pickett, C. Quinn, J. Rusted, J. Thom (2014-2018). Funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). Grant number: ES/L0011853/2.
‘Improving the experience of Dementia and Enhancing Active Life: A longitudinal
perspective on living well with dementia: the IDEAL-2 study’. Investigators: L. Clare,
I.R. Jones, R.G. Morris, F.E. Matthews, J. Rusted, J. Hughes, C. Victor, M. Knapp, R.W. Jones, R. Litherland, J.V. Hindle, C. Quinn, A. Martyr, S.M. Nelis, C. Ballard, A. Hillman (2018-2022). Funded as an Alzheimer’s Society Centre of Excellence, Grant number: 348 (ASPR2-16-001).
