IDEAL Taking part

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.

Interviews

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

Understanding research

Information from the Alzheimer’s Society
https://www.alzheimers.org.uk/research

National Institute for Health Research
https://www.nihr.ac.uk/explore-nihr/support/clinical-research-network.htm

• 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.
• SDCRN
  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.

England

1. Cambridgeshire & Peterborough NHS Foundation Trust
2. Norfolk and Suffolk NHS Foundation Trust
3. Essex Partnership University NHS Foundation Trust
4. Northumberland, Tyne and Wear NHS Foundation Trust
5. Tees, Esk and Wear Valleys NHS Foundation Trust
6. Lancashire Care NHS Foundation Trust (based in Preston)
7. Isle of Wight NHS Trust
8. Southern Health NHS Foundation Trust
9. St. George’s NHS Trust
10. Guy’s and St. Thomas’s NHS Trust
11. Kent and Medway NHS and Social Care Partnership Trust
12. 2gether Trust Cheltenham & Gloucester Avon & Wiltshire
13. The Research Institute for the Care of Older People (RICE)
14. Royal Devon and Exeter NHS Foundation Trust
15. Cornwall Partnership NHS Foundation Trust
16. Oxford Health NHS Foundation Trust
17. Berkshire Healthcare NHS Foundation Trust
18. Northamptonshire Healthcare NHS Foundation Trust
19. Nottinghamshire Healthcare NHS Trust
20. Derbyshire Healthcare Foundation Trust
21. Coventry & Warwickshire Partnership NHS Trust
22. Sheffield Teaching Hospitals NHS Foundation Trust
23. Leeds and York Partnership NHS Foundation Trust

Scotland

1. NHS Tayside
2. NHS Lothian
3. NHS Greater Glasgow and Clyde
4. NHS Lanarkshire

Wales

1. Betsi Cadwaladr University Health Board
2. Hywel Dda University Health Board‌

The IDEAL study is closed to new recruitment through Join Dementia Research.

For more information please visit the Join Dementia Research website - www.joindementiaresearch.nihr.ac.uk