Same Page Project
Developing guidelines for researchers working with people living with dementia
What is the Same Page project?
At the moment, there is tension between how research is designed (often using standardised measures, set questionnaires and scales) and the recommendations for best practice in dementia research (conducting research in a person-centered, flexible way).
The Same Page project aims to create guidelines that researchers could use when working with people living with dementia, especially when the researchers are using standardised measures, structured interviews and questionnaires with set answers.
These guidelines will allow researchers to plan studies which:
Prioritise the needs of people living with dementia
Encourage diverse groups to participate
Create high quality data for research analysis
Improve knowledge about dementia
Improve outcomes for those living with dementia and those who support them
Make sure dementia researchers and people living with dementia are on the same page!
How will we make the research guidelines?
We will host a series of online workshops and in-person consultations with people who have taken part in, collected data for, or organised dementia research previously. We will encourage a range of people to discuss their experiences in these workshops, including:
People living with dementia
Carers, supporters, friends and family members of people living with dementia
Community partners who work with people living with dementia
Research assistants, who often collect data in dementia research interviews
Dementia researchers with experience of using standardised measures
Psychometricians, who design standardised measures for research
People involved in designing and commissioning dementia research or promoting good practice
After the workshops and in-person consultations, we will draft our guidelines for researchers. These guidelines will be presented again to those with experience in dementia research for further comments, before being finalised and published.
Why is the Same Page project needed?
We began thinking about the way research was being carried out during the main DETERMIND project. Standardised measures are often complicated and do not give guidance on how they should be made accessible to or inclusive of people living with dementia. In dementia research, these measures tend to be used in structured interviews, where a research assistant reads questions which have specific answer options. Where guidance has been made on how to ask questions in these interviews, it does not often consider people living with dementia, or people living with dementia who might find it harder to take part in research due to their language, culture, sensory needs or disability. We also know that answering questions about difficult topics, such as care experiences and emotions can be upsetting, but there is little guidance on how to protect the mental wellbeing of people who take part in research.