Taking part

There are two pathways to taking part in the IDEAL programme, which is currently at Time point 4.

These paths have been separated into 'people who took part at previous time points' e.g. IDEAL T1-T3 often known as 'returning participants';

and 'people who are new to the IDEAL programme'.

 

 

The study involves 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 have previously taken part in IDEAL and agreed to be contacted will be invited to take part again by their local site.
  • New participants can contact the local study team, or they may be contacted directly by the study team to see if they are interested (depending on whether you have had previous contact with the service and agree to be contacted about research). The study is also liked on the Join Dementia Research register, where people can sign up and say they are interested in the study.

If you would like to participate in the study as a participant with dementia please:

1. Visit the Join Dementia Research website 

2. Search: Living well and enhancing active life: The IDEAL-2 study

3. Explore different arms of the study open to recruitment.

  • Visits would take place in your home at a time of day arranged with you.
  • The first steps for agreeing to any research study are to give ‘informed consent’ which means that the participant understand what the study will involve, and would like to take part. To help participants make this decision, the study team would provide them with an information sheet which goes into more detail about the research. Participants give informed consent by signing a consent form.
  • The study itself involves sitting down with a researcher to go through a series of questionnaires. If you are someone with dementia, the research would be reading out the questions, and you would be asked which answer explains your situation best. If you are a family member/friend taking part, you would be given similar questionnaires to self-complete.
  • The questionnaires cover a wide range of topics to explore experiences of living with dementia including:
    1. Health and wellbeing
    2. Interests and activities
    3. Your neighbourhood/community
    4. The services available to you
    5. Relationships with others
  • Taking part is voluntary and participants do not have to answer any questions they do not feel comfortable answering.

 In addition you can find more information about taking part in research here:

 

 

How people across Great Britain get involved in IDEAL-2?
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.
  • Neuroprogressive and Dementia Network NDNThe 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 30 NHS sites in England, Scotland and Wales. For IDEAL-2, 25 of the original sites are participating, and five new sites have joined the programme. Participating sites are listed below.

England

  1. Berkshire Healthcare NHS Foundation Trust
  2. Cambridgeshire and Peterborough NHS Foundation Trust
  3. Cornwall Partnership NHS Foundation Trust
  4. Coventry and Warwickshire Partnership NHS Trust
  5. Derbyshire Healthcare NHS Foundation Trust
  6. Isle of Wight NHS Trust
  7. Kent and Medway NHS And Social Care Partnership Trust
  8. Lancashire Care NHS Foundation Trust
  9. Livewell – NEW SITE
  10. Leeds And York Partnership NHS Foundation Trust
  11. Norfolk and Suffolk NHS Foundation Trust
  12. Essex Partnership University NHS Foundation Trust
  13. Northamptonshire Healthcare NHS Foundation Trust
  14. Northumberland, Tyne and Wear NHS Foundation Trust
  15. Nottinghamshire Healthcare NHS Foundation Trust
  16. Oxford Health NHS Foundation Trust
  17. Research Institute for the Care of Older People, Bath
  18. Devon Partnership NHS trust (also IDEAL-2 study R&D lead)
  19. Somerset Partnership – NEW SITE
  20. Tees, Esk and Wear Valleys NHS Foundation Trust
  21. 2gether NHS Foundation Trust
  22. Bristol Brain Centre – NEW SITE
  23. Humber NHS Foundation Trust – NEW SITE

Scotland

  1. NHS Tayside
  2. NHS Lothian
  3. NHS Greater Glasgow and Clyde
  4. NHS Fife – NEW SITE
  5. NHS Lanarkshire

Wales

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

Participants from original IDEAL sites that are not participating in the IDEAL-2 will be approached by researchers from the Exeter co-ordinating centre (Sheffield Teaching Hospitals NHS Foundation Trust, Southern Health NHS Foundation Trust, Guy's and St. Thomas’s NHS Trust, St. George's NHS Trust).

 

Geographical spread of IDEAL-2 study sites

 IDEAL-2 map