There were two pathways to taking part in the IDEAL programme.
These paths were separated into people who took part at previous time point' e.g. IDEAL T1-T3 often known as 'returning participants'; and people who are new to the IDEAL programme'.
The study involved the same steps for new and returning participants in general, however a few differences are worth noting, and these are described below:
- All participants who previously took part in IDEAL and agreed to be contacted were invited to take part again by their local site.
- New participants were contacted directly by their local site to see if they were interested (depending on whether they had previous contact with the service and agree to be contacted about research). The study was also liked on the Join Dementia Research register, where people could sign up and say they were interested in taking part in the study.
Of those that took part in IDEAL 253 people who experienced changes in their memory and 242 friends/family returned to take part at Time 4. Time 4 was not completed due to the COVID-19 pandemic.
31 people who experienced changes in their memory and 35 friends/family took part in the study at Time 5; this number was due to the COVID-19 pandemic preventing further data collection after the first six months of data collection.
96 people who experienced changes in their memory and 173 friends/family took part in the study at Time 6, where data collection was carried out remotely via telephone or online.
Newly recruited participants.
At Time 4 204 people who experienced changes in their memory and 175 friends/family took part. Time 4 was not completed due to the COVID-19 pandemic so our target of 250 people who experienced changes in their memory was not reached.
Of these 43 people who experienced changes in their memory and 41 friends/family returned to take part at Time 5 before it was stopped due to COVID-19.
Time 6 included 40 people who experienced changes in their memory and 70 friends/family.
People taking part completed questionnaires that covered the following topics, this was slightly shorter than IDEAL but the similar questions were asked:
- Capitals, assets and resources (social, economic, environmental, physical and psychological factors, access to and use of social and health care, including community resources, and quality of the caregiving relationship);
- Challenges related to dementia or other issues (including dementia severity, other physical and mental health problems, and dependence);
- Adaptation and indicators of living well (well-being, life satisfaction, quality of life, social participation, and positive emotions).
Family members or friends completed their own questionnaires and also provided information about the person they support.
We gathered detailed information over time on the experiences of people with dementia and family members or friends who continued to take part from IDEAL.
Some information on taking part in research: a guide to understanding what is involved (PDF file, 1.12MB), or here if you require a Welsh language version
Information from the Alzheimer’s Society
National Institute for Health Research
How people across Great Britain got involved in IDEAL-2
This research was supported by a number of NHS clinical research networks, and NHS staff from these networks were involved in conducting the research.
- Local NHS staff visited participants in their homes, provided them with background information, and completed the study questionnaires.
These networks are part of the National Health Service (NHS) and network staff are there to enable NHS patients to contribute to research by participating in research projects.
- NIHR Clinical Research Network: Dementia and Neurodegenerative Diseases
The Dementias and neurodegeneration (DeNDRoN) Specialty is one of 30 Specialties which bring together communities of clinical practice to provide national networks of research expertise. Its membership is made up of research-interested clinicians and practitioners at both national and local levels.
- Health and Care Research Wales CRC
The Health and Care Research Wales Clinical Research Centre aims to increase the quality and quantity of people-centred research in Wales.
- Neuroprogressive and Dementia Network NDN
The NDN brings together Scotland's leading academics, clinicians, carers and people with dementia and aims to turn scientific discoveries into safe and effective treatments.
IDEAL programme participants were recruited from 29 NHS sites in England, Scotland, and Wales. For IDEAL-2, 23 of the original sites are participating, and five new sites have joined the programme. Participating sites are listed below.
- Berkshire Healthcare NHS Foundation Trust
- Cambridgeshire and Peterborough NHS Foundation Trust
- Cornwall Partnership NHS Foundation Trust
- Coventry and Warwickshire Partnership NHS Trust
- Derbyshire Healthcare NHS Foundation Trust
- Isle of Wight NHS Trust
- Kent and Medway NHS And Social Care Partnership Trust
- Lancashire Care NHS Foundation Trust
- Livewell – NEW SITE
- Leeds And York Partnership NHS Foundation Trust
- Norfolk and Suffolk NHS Foundation Trust
- Essex Partnership University NHS Foundation Trust
- Northamptonshire Healthcare NHS Foundation Trust
- Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust
- Nottinghamshire Healthcare NHS Foundation Trust
- Oxford Health NHS Foundation Trust
- Research Institute for the Care of Older People, Bath
- Devon Partnership NHS Trust (also IDEAL-2 study R&D lead)
- Somerset Partnership – NEW SITE
- Tees, Esk and Wear Valleys NHS Foundation Trust
- Gloucestershire Health and Care NHS Foundation Trust
- Bristol Brain Centre – NEW SITE
- Humber NHS Foundation Trust – NEW SITE
- NHS Lothian
- NHS Fife – NEW SITE
- NHS Lanarkshire
- Betsi Cadwaladr University Health Board
- Hywel Dda University Health Board
Participants from original IDEAL sites that are not participating in the IDEAL-2 were visited by researchers from the Exeter co-ordinating centre (Sheffield Teaching Hospitals NHS Foundation Trust, Southern Health NHS Foundation Trust, Guy's, St. Thomas’s NHS Trust, St. George's NHS Trust, NHS Tayside, and NHS Greater Glasgow and Clyde).