The IDEAL programme is led by REACH at the University of Exeter and explores people's experiences of living well by completing interviews made up of multiple questionnaires with people living with dementia across Great Britain. The IDEAL programme has been running since 2014 and will continue until 31st December 2023.
A longitudinal cohort study explores a group of people with a shared characteristic e.g. memory difficulties, and looks at the group's experiences over time.
The IDEAL programme baseline began with 1537 people who have difficulties with memory, thinking or behaviour that may have been described as dementia or an associated condition, and 1277 family members or friends who provide support throughout Great Britain.
The IDEAL-2 programme will provide ground-breaking longitudinal evidence to underpin the development of novel interventions and initiatives to improve quality of life for people with dementia.
IDEAL-2 will build on the unique resource of an established national longitudinal cohort focused on living well with dementia, the IDEAL cohort. IDEAL-2 will follow the IDEAL cohort, including additional participants with rare dementia subtypes, for three further time-points to gain an understanding of their experiences over a total 6-year period as the condition progresses.
For those who took part in IDEAL you will be contacted to be involved in IDEAL-2, and we hope you will continue to engage with the studies.
- Identify key indicators of quality of life as dementia progresses.
- Ensure meaningful evaluation of living well.
- Include the perspective of people with severe dementia.
- Include the perspective of people from ‘seldom heard’ groups: people from black, Asian and minority ethnic (BAME) communities and people living with undiagnosed dementia.
- Outline the determinants of service use patterns and costs.
- Create an action plan for policy and practice development.
Clare, L., Jones, R.W., Morris, R., Matthews, F., Rusted, J., Hughes, J., Victor, C., Knapp, M., Jones, I.R., Litherland, R., Hindle, J.V., Quinn, C., Martyr, A., Nelis, S.M., Ballard, C., & Hillman, A. (2018-2023).
Find out more
For a more detailed description of the project please see our freely available 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. (PDF file, 1.9mb)