IDEAL Swing talking

Taking part

The IDEAL research project is a major, five-year longitudinal cohort study of 1500 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.

Who is taking part

  • 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.

What is involved in taking part

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.

How many people took part

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.

How have people felt about taking part in IDEAL?

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"

Information about taking part in research

Some information on taking part in research: a guide to understanding what is involved (PDF file, 1.12MB)

Understanding research – some information from the Alzheimer’s Society

National Institute for Health Research