IDEAL Taking part
The IDEAL research project was a major, five-year longitudinal cohort study of people with who have difficulties with memory, thinking or behaviour, that may have been described as dementia or an associated condition, and on the family members or friends who provide support throughout the UK.
Recruitment into the IDEAL cohort commenced in 2014 and ended in 2016. The information below describes how people joined IDEAL.
People taking part completed questionnaires that covered the following topics:
- 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. The in-depth interviews examined what extent people and their carers felt that they were able to live well and the factors involved in this.
1537 people who experienced changes in their memory and 1277 friends/family took part in the study at Time 1.
They were followed up over two years: 1183 people who experienced changes in their memory and 988 friends/family took part in the study at Time 2, and 851 people who experienced changes in their memory and 759 friends/family took part in the study at Time 3.
Some people who have taken part have provided some nice feedback on the project:
- "Very enjoyable - provided me with a greater insight into the future and what it may hold."
- "The project is thought-provoking and enjoyable. Hope this will help others. Very interesting, made daughter and mother talk about things they had not done before - 'opened our eyes'"
- "Found the experience very interesting. Good research project that may help people in the future"
- "I am happy to be taking part. It has heightened my awareness of our circumstances. I hope there will be positive outcomes from this research for future provision."
- "Happy to contribute and help other people"
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 we run the study
- This research is supported by a number of NHS clinical research networks, and NHS staff from these networks will be involved in conducting the research.
- Local NHS staff visit participants in their homes, providing them with background information and completing 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.
The Scottish Dementia Clinical Research Network brings together Scotland's leading academics, clinicians, carers and people with dementia and aims to turn scientific discoveries into safe and effective treatments.
- Cambridgeshire & Peterborough NHS Foundation Trust
- Norfolk and Suffolk NHS Foundation Trust
- Essex Partnership University NHS Foundation Trust
- Northumberland, Tyne and Wear NHS Foundation Trust
- Tees, Esk and Wear Valleys NHS Foundation Trust
- Lancashire Care NHS Foundation Trust (based in Preston)
- Isle of Wight NHS Trust
- Southern Health NHS Foundation Trust
- St. George’s NHS Trust
- Guy’s and St. Thomas’s NHS Trust
- Kent and Medway NHS and Social Care Partnership Trust
- 2gether Trust Cheltenham & Gloucester Avon & Wiltshire
- The Research Institute for the Care of Older People (RICE)
- Royal Devon and Exeter NHS Foundation Trust
- Cornwall Partnership NHS Foundation Trust
- Oxford Health NHS Foundation Trust
- Berkshire Healthcare NHS Foundation Trust
- Northamptonshire Healthcare NHS Foundation Trust
- Nottinghamshire Healthcare NHS Trust
- Derbyshire Healthcare Foundation Trust
- Coventry & Warwickshire Partnership NHS Trust
- Sheffield Teaching Hospitals NHS Foundation Trust
- Leeds and York Partnership NHS Foundation Trust
- NHS Tayside
- NHS Lothian
- NHS Greater Glasgow and Clyde
- NHS Lanarkshire
- Betsi Cadwaladr University Health Board
- Hywel Dda University Health Board