Living well and enhancing active life: The IDEAL-2 study
Research type
Research Study
Full title
The IDEAL-2 study: Improving the experience of dementia and enhancing active life: a longitudinal perspective on living well with dementia\n
IRAS ID
235712
Contact name
Linda Clare
Contact email
Sponsor organisation
University of Exeter
Duration of Study in the UK
4 years, 5 months, 31 days
Research summary
Research Summary
The aim of the IDEAL-2 programme is to provide evidence about living well with dementia, service use and areas of unmet need for people with dementia. It will build on the IDEAL cohort of 1550 people with mild-to-moderate dementia and 1286 carers, interviewed initially between 2014 and 2016 and followed up 12 and 24 months later.\nThe central element of IDEAL-2 is three further yearly follow-ups of the IDEAL cohort. At the time of the first follow-up we will enrich the cohort with additional participants from groups that were underrepresented in the original cohort. We will link the cohort data with administrative data to obtain information about health service use. This will be supplemented by five linked studies; the programme consists of six studies in total: \nStudy One: IDEAL-2 cohort, involving three further yearly follow-ups of the IDEAL cohort including new participants, and data linkage – subject to NHS HRA and Scotland A Research Ethics Committee (REC) approvals.\nStudy Two: Determinants of service use patterns and costs in the IDEAL-2 cohort – this study involves analysis of IDEAL-2 cohort data collected under Study One from a health economic perspective by members of our team, and does not require additional approval.\nStudy Three: Co-production of new measures of ‘living well’– subject to University of Exeter REC approval.\nStudy Four: Perspectives of people living with advanced dementia - subject to NHS HRA approval.\nStudy Five: Perspectives of people with dementia from Black, Asian, and minority ethnic groups - subject to Brunel University London REC approval.\nStudy Six: Perspectives of people living with undiagnosed dementia – subject to Wales REC 5 approval as an amendment to the CFAS-Wales study ethics application (reference number 10/WNo01/37).\nWe are applying for NHS HRA approval for Study One and Study Four from the above list. [COVID-19 amendment 10/05/2020] We wish to interview people with dementia and their carers living in the community about the social and psychological challenges they face during the current COVID-19 pandemic. We have ethical approval to collect\nqualitative data about key issues in the lives of people with dementia and this is included in the original protocol. We\nwill rapidly produce guidelines using the data from these interviews focused on the key issues relating to the impact\nof COVID-19 pandemic and the associated social distancing measures along with information collected from our\npatient-carer networks in order to help people with dementia to ‘live well’ during this crisis. The findings will be\nanalysed and published as normal.\nThe lockdown situation means that University researchers are working from home without access to University offices or printers, and do not have the ability to store paperwork securely at home. In addition, participants may not be able to, or may be reluctant to, post paperwork due to restrictions on movement during isolation or concerns about safety. We will ensure:Eligible participants will be identified from the study database by IDEAL-2 researchers working on secure University of Exeter owned laptops. Identified participants will be sent an invitation via email or will be telephoned directly. For people who are initially interested in participating, the researchers will provide information about the study by either emailing the participant information sheet or reading out in full the prepared document. Potential participants will be offered 5 working days to consider taking part. Researchers will take time to answer any questions, and to repeat sections where necessary. Researchers will confirm on the consent form that they have done this.\nResearchers will only recruit participants able to give informed consent following existing IDEAL approved guidance\n‘Assessment of capacity to consent’. Participants will also be asked to identify themselves by providing basic information already held by the researcher such as their full name and address). Researchers will read the consent form to the participant and will ask for verbal confirmation of (a) verbal consent being taken and (b) each consent statement. Informed consent will be audio recorded using an encrypted digitalrecorder. A copy of the consent and the interview data will be held securely on lockable and protected University issued encrypted computers at home. Informed consent and the interview will be recorded on an encrypted digital audio recorder. The recordings will be downloaded to a secure University server in a location with password protection. The researcher will electronically sign and date the electronic verbal consent form and this will be held securely with the digital recording. Participant data will remain confidential. No personally identifiable data will be collected during consent or the interview. Instead, the researcher will state the existing IDEAL patient ID number before the consent, and again before the interview. The consent and interview will be stored as two different files. During transcription any personally identifiable data will be redacted. Included in this amendment are:New invitation letters for people with dementia or carers: sent by email if possible or read to the participant by the researcher New Information sheets for people with dementia or their carers: sent by email if possible or read to the participant by the researcher. New Consent form: completed and signed by the researcher and read out to the participant.\nAmended protocol with new version with highlighted changes and a new clean copy.
Summary Results
IDEAL has evolved into a ten-year social science research programme focused on understanding what enables people with mild-to-moderate dementia living in the community to have a good quality of life and experience a high level of well-being. The first five years were funded by ESRC and NIHR, and for the last five years IDEAL was funded as an Alzheimer's Society Centre of Excellence. Involvement of people with dementia and carers was central throughout IDEAL and moved beyond traditional forms of involvement to partnership working and co-production as the programme developed.
At the core of the programme was the IDEAL cohort. This was a large group of 1,749 people with dementia recruited and visited initially by Clinical Research Network staff in 34 NHS organisations in England, Scotland, and Wales, and then followed at yearly intervals for up to six years. They were asked to invite a family member or other supporter (here we call them 'carers') to join the study as well if they wished, and 1,460 carers joined the study, giving information about the person with dementia and about their own experiences. All these people provided answers to many questionnaires, which yielded numerical scores, and some open-ended questions. A research team member visited a smaller number of people to talk in detail about their experiences. During the second phase of IDEAL, we additionally explored the experiences of underrepresented groups including people from minority ethnic communities, people living with undiagnosed dementia, and people with more severe dementia. We expected that the number of people in the cohort would get smaller as the years went on, as people withdrew either due to the dementia progressing or for other health or personal reasons, but we were hit particularly hard by COVID, when we had to move our data collection online and talk to people over the telephone. Still, we collected a large amount of information about people's experiences that we have been able to put to good use. We have published over 70 scientific papers so far. These can be found here https://scanmail.trustwave.com/?c=261&d=lNGN5W40GnjVnU-2DcMTdudfHIbjfSzQOLzwEOiyfQ&u=https%3a%2f%2fu2790089%2ect%2esendgrid%2enet%2fls%2fclick%3fupn%3douFFm-2FZqrUn2jjUD5TieZAG80GZPyQf-2FMBqnWLUYONUeiNbwcJQheyEEOw8V1W7fu%5fTU%5fE1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YLD1E1vyvNP3XA3p96yrqP5tio59iKbYrct8NTETCh4Y2cxR22tDOxC0EcvE33VTkM2Rwe8-2Bnl0batISfBcg3-2Bq6MPjArf83MppZLV-2BfG0eszD1FELBVAeHVjf2aGxg-2BlDLRhSAADBt-2BFXxBNUnstTpnOJgFpmV2vf-2FR-2BPFANnVZA-3D-3D each with an accessible summary.
Using our numerical data, we developed a model showing how many aspects of people's experience influence quality of life and well-being. We went on to find out what changes in a person's experience could signal that the person was at high risk of a decline in quality of life and well-being. We similarly explored what affects well-being for family carers. We then showed how, in couples where one is a person with dementia and the other a carer, aspects of each individual's experience affect the well-being of the other. We translated these findings into a set of 'living well maps' and are developing these into a resource that can be used by commissioners, service providers and practitioners wanting to think about how to support quality of life and well-being for people with dementia and carers. We went on to explore sources of inequality affecting the ability to experience good quality of life and well-being. These include type of dementia, having additional health problems, living in a deprived area, living alone, and being from a minority ethnic community. Our participants were not receiving a great deal of support from health services, but we also noted that older women were less likely than others to receive this kind of support. Thinking about the diversity of people's experiences and the challenges of measuring how well someone is doing, we worked with people with dementia to co-produce an accessible short questionnaire, the My Life Questionnaire, that captures key elements of a person's experience and can point to areas that may need attention or additional support, and tested this to show that it is scientifically robust and can be used with confidence by practitioners.
In the early stages of the COVID pandemic we were able to use our evidence to rapidly produce information and advice for people with dementia and carers, and our materials in English and Welsh were translated into 10 more languages by the Race Equality Foundation. This led us to co-produce the Living with Dementia Toolkit, an online resource for people with dementia and carers with printed guides available. The Toolkit can be found here: https://scanmail.trustwave.com/?c=261&d=lNGN5W40GnjVnU-2DcMTdudfHIbjfSzQOOz9Re3kfw&u=https%3a%2f%2fu2790089%2ect%2esendgrid%2enet%2fls%2fclick%3fupn%3dXv3JSvJ-2B3M71ppf7N9agbSxU4wIy0vZOpSxmLJZ-2FTYy8pkcK-2Bb9grk26iZxsuNGkhkzOtfSxqOlXQcjbzVHO5Q-3D-3DGSRz%5fE1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YLD1E1vyvNP3XA3p96yrqP5jcmsQNQV7E6bwdwCGHIaQiZ-2BXVgwUsNEXYlgUgZ7HmoTHt2Eg-2FriHDv-2BkDibRESVQpKnO5VRsptDub94ZwRJPmUSbelxPnhKlZYCFyUDg0qjUg1smVUZfI2RKeFzSDVwsyUG6-2F4EuO4jpXbE60E5Rg-3D-3D Initially conceived as a means of supporting people through COVID, and launched in 2021, it has evolved into a more extensive and lasting output, designed to offer hope, information and inspiration for people living with and affected by the condition. The Toolkit is being used by individuals, by GPs, by service providers and community groups. It is included in the World Health Organization Global Dementia Observatory Knowledge Exchange Forum and has so far been accessed by over 23,000 users from 130 countries.
As well as providing evidence-based resources for people with dementia and carers, we have used arts-based methods, all co-produced with people with dementia, to convey the voice of people with dementia and increase public awareness. A set of banners for hope and change, 'The Unfurlings', powerfully conveys the need for greater understanding. Our play and documentary film 'The World Turned Upside Down' explores how families can communicate about the challenges of living with dementia, and our short opera 'The Bridge' focuses on the impact of developing dementia and adjusting to the diagnosis. More information can be found about the projects here: https://scanmail.trustwave.com/?c=261&d=lNGN5W40GnjVnU-2DcMTdudfHIbjfSzQOLb3FOiyLQ&u=https%3a%2f%2fu2790089%2ect%2esendgrid%2enet%2fls%2fclick%3fupn%3dXv3JSvJ-2B3M71ppf7N9agbYGNGd-2FQDTa7GGC8kkF83Ud-2BAkYLn0HV-2FmHKZ4uC0U-2FcJN2S%5fE1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YLD1E1vyvNP3XA3p96yrqP5ou8ADSsFjrm2R6g5arK3NQuiC-2FsSynsNNct4N920ia-2FpyqCGv2JI1Art4z1Ha4QETB9I-2FBBv-2Fefi1aebbberrHCoHgwk9kg7G1BN4cg1yXgMxHGILUh0CJ-2BDzI97vuUAYh5xVeHp1TBRUA13yFSg3A-3D-3D Finally, a forthcoming book based on IDEAL evidence will set out a call for action about the changes people need and want to see to improve the experience of living with dementia.
REC name
Wales REC 5
REC reference
18/WA/0111
Date of REC Opinion
20 Mar 2018
REC opinion
Favourable Opinion