IDEAL Taking part

The IDEAL research project is 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.

Recuitment into the IDEAL cohort commenced in 2014 and the information below descibes how people joined IDEAL.

  • People with dementia and other memory problems will respond to questionnaires at three time points over a 24-month period: baseline, one year after base line, and two years after baseline.
  • A primary carer where available will be involved at each time point.
  • A smaller number of participants will also be interviewed at one and two year time points.

People taking part will complete a questionnaire covering 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 will complete their own questionnaires and also provide information about the person they support.

Interviews

We will gather detailed information over time on the experiences of people with dementia and family members or friends. The in-depth interviews will examine to what extent people and their carers feel they are able to live well and the factors involved in this.

We are pleased to say that over 1500 people who have experienced changes in their memory and over 1300 friends/family have agreed to take part in the study. Entry to the study has now closed.

We will continue to follow-up people who enrolled in the study at 12 and 24 month intervals.

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)

Understanding research

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

National Institute for Health Research
http://www.crn.nihr.ac.uk/

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.
  • 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 recuitment through Join Dementia Research.

January 2017 - There are opportunities to be involved in other studies including our linked study DECIDE.

The DECIDE study is looking to develop a new assessment to help improve the lives of carers.

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