IDEAL-2 Workstreams

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.

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, frontotemporal 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).

For further information please contact Dr Claire Pentecost.

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.

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.

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 Claire Pentecost.

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 often overlooked in research. In this workstream we hope to develop alternative ways of communicating with them to help them participate in research.

Outcomes:

Collins, R., Hunt, A., Quinn, C., Martyr, A., Pentecost, C., & Clare, L. (2022). Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation: findings from the IDEAL programme. Dementia, 21(4), 1135-1153. https://doi.org/10.1177/14713012211069449 (open access) click here to read an accessible summary‌

Collins, R., Martyr, A., Hunt, A., Quinn, C., Pentecost, C., Hughes, J.C., & Clare, L. (2024). Methods and approaches to facilitate inclusion of the views, perspectives, and preferences of people with moderate-to-severe dementia in research: a narrative systematic review. International Journal of Older People Nursing, 19(1), e12594. https://doi.org/10.1111/opn.12594 (open access) click here to read an accessible summary

For further information please contact Dr Anthony Martyr or Dr Catherine Quinn.

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 Prof Christina Victor.

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 wanted to learn more about the experiences of people living with undiagnosed dementia and their carers. We did this through individual face-to-face interviews, so people could have an opportunity to tell us about their experiences in their own words.
As part of this workstream we wanted to find out what aspects of people’s lives might influence the likelihood of them not receiving a dementia diagnosis. We did 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?

Outcomes:

Gamble, L.D., Matthews, F.E., Jones, I.R., Hillman, A., Woods, B., MacLeod, C., Martyr, A., Collins, R., Pentecost, C., Rusted, J., & Clare, L. (2022). Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study. BMC Geriatrics, 22, 409. https://doi.org/10.1186/s12877-022-03086-4 (open access) click here to read an accessible summary‌

Henley, J., Hillman, A., Jones, I.R., Woods, B., MacLeod, C.A., Pentecost, C., & Clare, L. (2021). 'We're happy as we are': the experience of living with possible undiagnosed dementia. Ageing & Society. Advance online publication. https://doi.org/10.1017/S0144686X21001495 click here to read an accessible summary‌

For further information please contact Dr Alexandra Hillman.

In this workstream we would like to learn more about service use and the associated costs such as GP visits and medication use. We will do this by looking at the data collected as part of the cohort study which included questions on people’s use of health and social services, out-of-pocket payments for equipment and travel to appointments and unpaid care provided by family and friends.

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.