IDEAL-2 Workstreams

The IDEAL-2 study (2018-2022) is funded by Alzheimer’s Society to build upon and enhance IDEAL cohort.

The IDEAL-2 study includes several projects which work alongside each other to learn more about living well with dementia and become Alzheimer’s Society Centre of Excellence. The different workstreams have their own focus and a range of activities for people to be involved in supporting. If you would like to know more about any of the workstreams please click on the relevant link below.

The IDEAL programme explores what 'living well' means for people with dementia, their family and friends. The IDEAL team has been asking people to complete booklets of questionnaires to find out more about what things help or hinder to live well, with the same questions repeated each year for the period of three years.

IDEAL-2 will continue with the same testing strategy. By looking at people’s answers across time we can see how peoples' experiences may change.

IDEAL-2 Flowchart

Overview of IDEAL Programme with the timeline for IDEAL-2

IDEAL-2 will also include new participants: more people with rare types of dementia (Parkinson's disease dementia, Dementia with Lewy Bodies, Fronto-temporal dementia), people under age 65, and people aged 90 or older. We hope that this way findings from IDEAL programme will be reflective of the diverse experiences people have with dementia.

See diagram below for illustration of the survey waves across Timepoints (T4 to T6).

IDEAL-2 Waves

For further information please contact Dr Marta Bienkiewicz.

The IDEAL programme aims to explore what shapes people’s ability to live well with dementia. Within the programme there are various questionnaires exploring quality of life, well-being and satisfaction with life, but there is yet to be a measure which captures the concept of ‘living well’ sufficiently.

IDEAL-2 Living well

A key challenge for previous questionnaires is that they have been developed by researchers with limited consultation with people with dementia. Workstream 2 aims to address this by collaborating with Innovations in Dementia and support people with dementia to take on a researcher role and design and develop a new measure of living well. Two versions will be created, one 'personalised measure' which allows participants to decide their own questions, and a 'standardised measure' developed from the questions chosen in the personalised measure.

IDEAL-2 Activities

In order to develop a new measure, we need to make sure that the questions asked reflect the experiences of people living with dementia. The starting point for this will be deciding exactly what 'living well' means to people with dementia and whether is it the best label to use. We hope that by empowering people with dementia to be researchers, future participants who answer the questionnaire will feel that the questions are relevant and accurately capture their experiences.

We hope that by including people with dementia throughout the research process, participants who answer the questionnaires will feel that the questions are relevant to them and accurately capture their experiences.

For further information please contact Dr Rosalie Ashworth.

Workstream 3 aims to facilitate inclusion in research of people with advanced dementia to understand their wishes, preferences and feelings. Those people can still communicate verbally to a degree, but their voice is are often overlooked in research. In this workstream we hope to develop the alternative ways of communicating with them to help them participate in research.

For further information please contact Dr Anthony Martyr.

IDEAL was not able to recruit many people from South Asian and African–Caribbean communities. To find out what helps people from these communities to live well with dementia we are planning to interview community leaders to start with. We will ask the community leaders their views on how their community copes with memory problems. We will use this information to produce user-friendly approaches to collecting the views of South Asian and African-Caribbean people. We will then use this approach to find out more about what helps people in these communities to live well.

"I really think that if I lost my memory that my life would be meaningless, there would be no purpose to my existence."

                                                                                                  Asian faith leader male (Muslim) aged 50-60

For further information please contact Dr Eleanor van del Huevel.

A lot of people who are experiencing changes in memory and other aspects of thinking have not received a diagnosis of dementia, and so are unable to access care and treatment. In this workstream we would like to learn more about the experiences of people living with undiagnosed dementia and their carers. We will do this through individual face-to-face interviews, so people can have an opportunity to tell us about their experiences in their own words.
As part of this workstream we would also like to find out what aspects of people’s lives might influence the likelihood of them not receiving a dementia diagnosis. We will do this by looking at the information that has already been collected using questionnaires.

Key research questions
1. What are the experiences of people living with undiagnosed dementia and their carers?
2. How do people living with undiagnosed dementia differ from their diagnosed counterparts?
3. What factors predict the likelihood of not receiving a diagnosis?

Expected outputs
1. Information about the experiences of people living with undiagnosed dementia.
2. Greater understanding of why some people with dementia remain undiagnosed.

For further information please contact Dr Josie Henley/Dr Alexandra Hillman.

A lot of people who are experiencing changes in memory and other aspects of thinking have not received a diagnosis of dementia, and so are unable to access care and treatment.

In this workstream we would like to learn more about the experiences of people living with undiagnosed dementia and their carers. We will do this through individual face-to-face interviews, so people can have an opportunity to tell us about their experiences in their own words.

As part of this workstream we would also like to find out what aspects of people’s lives might influence the likelihood of them not receiving a dementia diagnosis. We will do this by looking at the information that has already been collected using questionnaires.

For further information please contact Dr Cate Henderson.

IDEAL 2 will be finding out a lot about how people cope with dementia in different circumstances. We hope to find out what makes people’s lives more enjoyable and more satisfying whether they have dementia or whether they are caring for someone with dementia.

This workstream aims to get our findings widely known among people who work in the dementia field and in the wider community.

We want to produce information and awareness sessions for the community, a dementia “What really matters” guide for professionals and a seminar series open to all. We are also looking for new ways to reach out to people.

Naturally, we will publish our research in academic journals as well.

For further information please contact Prof Christina Victor.