The IDEAL Programme
Recent government policy has prioritised living well as a goal for people who have dementia and their primary carers (usually family members). However, there is no clear definition of what it means to 'live well' with conditions such as dementia and no clear understanding of the factors that might influence the ability of individuals and families to live well. There is a need to examine not just what it is like living with dementia, but the social and environmental context for people. Little is known about how people with dementia and their carers make sense of and adapt to the condition and to the changes they experience over time.
The IDEAL programme explores people’s experiences of living well with dementia. Led by Prof Linda Clare at the University of Exeter, the IDEAL programme started in 2014. Dr Catherine Quinn, from the Centre of Applied Dementia Studies, is a Co-Investigator on IDEAL. The study has two phases: IDEAL (funded by the ESRC/NIHR 2014-2019) and IDEAL-2 (funded by the Alzheimer’s Society 2018-).
IDEAL is a longitudinal cohort study that follows a group of people living with dementia and their family carers to explore the group’s experiences over time. The study collects data from three time points. This study uses a mixed methods approach to find out what social and psychological factors support or hinder the ability of people and their families to live well with dementia.
The IDEAL programme baseline began with 1547 people with dementia and 1283 carers (mostly family members or friends) who provide support throughout Great Britain. A more detailed description of the study can be found in the published protocol:
Clare, L., Nelis, S.M., Quinn, C., Martyr, A., Henderson, C., Jones, I.R., Jones, R.W., Knapp, M., Kopelman, M.D., Morris, R.G., Pickett, J.A., Rusted, J.M., Savitch, N.M., Thom, J.M., & Victor, C.R. (2014). Improving the experience of dementia and enhancing active life-living well with dementia: study protocol for the IDEAL study. Health and Quality of Life Outcomes, 12, 164. doi: 10.1186/s12955-014-0164-6.
The IDEAL-2 study includes several workstreams, each contributing to our understanding of living well with dementia:
- Workstream 1 Cohort: In IDEAL-2 we continue to follow-up our existing cohort and also include new participants in the study.
- Workstream 2 Coproduction: In this workstream we are developing a new measure of “living well”
- Workstream 3 Advanced Dementia: Dr Catherine Quinn co-leads this workstream. In this workstream we are looking at how to better facilitate the inclusion of people with advanced dementia within research.
- Workstream 4a Living well in BAME groups: In this workstream we are exploring living well in South-Asian and African-Caribbean people.
- Workstream 4b Undiagnosed dementia: In this workstream we would like to learn more about the experiences of people living with undiagnosed dementia and their carers.
- Workstream 5 Health economics: In this workstream we would like to learn more about service use.
- Workstream 6 Action plan: This workstream focuses on disseminating our findings to people who work in the dementia field and in the wider community.
A more detailed description of the IDEAL-2 study can be found in the published protocol:
Silarova, B., Nelis, S.M., Ashworth, R.M., Ballard, C., Bieńkiewicz, M., Henderson, C., Hillman, A., Hindle, J.V., Hughes, J.C., Lamont, R.A., Litherland, R., Jones, I.R., Jones, R.W., Knapp, M., Kotting, P., Martyr, A., Matthews, F.E., Morris, R.G., Quinn, C., Regan, J., Rusted, J.M., van den Heuvel, E.A., Victor, C.R., Wu, Y.-T., & Clare, L. (2018). Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life. BMC Public Health, 18, 1214. doi: 10.1186/s12889-018-6129-7.
The ALWAYS Group
The IDEAL programme is supported by the ALWAYs (Action on Living Well: asking You) involvement group, comprising of people with dementia and carers who advise on different aspects of the project based on their personal experience, skills and expertise. For more information about the ALWAYs group watch our video.
The ALWAYs group published a paper on their experiences of supporting the IDEAL programme:
Litherland, R., Burton, J., Cheeseman, M., Campbell, D., Hawkins, M., Hawkins, T., Oliver, K., Scott, D., Ward, J., Nelis, S.M., Quinn, C., Victor, C., & Clare, L. (2018). Reflections on PPI from the 'Action on Living Well: Asking You' advisory network of people with dementia and carers as part of the IDEAL study. Dementia, 17, 1035-1044. doi: 10.1177/1471301218789309
For more information about the IDEAL programme and for a complete list of publications and presentations from the study please see the study website: http://www.idealproject.org.uk/.
‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2. 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.A. Pickett, C. Quinn, J. Rusted, J. Thom. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J. Rusted. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service, or Alzheimer’s Society. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged.