Programme overview

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.

IDEAL
IDEAL-2

IDEAL 2014-2019

Why we need to do this project

Recent government policy has prioritised living well as a goal for people who have dementia or people who are experiencing difficulties with memory, thinking or behaviour 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 has been some work on quality of life and quality of care but these measures do not capture all the elements involved in living well.
There is a need to examine not just what it is like living with conditions like dementia, but the social and environmental context for people. Little is known about how people with dementia or memory problems and their carers make sense of and adapt to the condition and to the changes they experience over time.

What are the aims of the research

This study is a longitudinal cohort study using 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 any type of dementia or similar problems.

By longitudinal we mean over time.
By cohort study we mean studying the same large group of people.
By mixed methods we mean using both quantitative methods (measuring things numerically) and qualitative methods (talking to people to get an in-depth understanding)

Research questions

What factors influence how people with conditions like dementia and carers are able to live well?
How do changes over time affect people's ability to live well?
What do people with problems with memory, thinking or behaviour and their carers believe helps or hinders the possibility of living well?

What we hope to achieve

The study will identify what changes could be made by individuals, families and communities to enable people to live well with dementia. At the end of the study we will produce recommendations and an action plan for social and health care purchasers, providers and planners, and advice and guidance for people with dementia or memory problems and those who support them.

Find out more

For a more detailed description of the project please see our freely available 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. (PDF file, 610kb)

IDEAL-2 2018-2023

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 Cohort

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.

Aims

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.

Investigators

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)