Article type
Year
Abstract
Background:
This presentation will discuss the co-production of two new quantitative measures of quality of life and well-being for people with dementia. Alternative measures have been criticised for not accurately reflecting the experiences of people with dementia, largely due to a lack of engagement with people affected with the condition during the development stages.
Objectives:
Co-production aims to create a shift from people 'being researched' to 'being researchers'. By moving away from a top-down approach to research design, we aimed to empower people with dementia to shape the research they are part of and equip them with the skills to actively participate.
Methods:
The research is part of a nationwide research project on living well with dementia. IDEAL included 1550 people with dementia and 1286 carers, with participants being asked a broad range of questions on living with dementia at yearly time points for two years. IDEAL-2 continues to follow up this cohort for another two years whilst also recruiting new participants, with a particular focus on under-represented groups. For the purpose of a co-produced sub-study, co-researchers worked together to isolate the key factors emerging from IDEAL qualitative data around quality of life and well-being; designed new questionnaires based on the refined data; and piloted the measures with other people living with dementia.
Results and conclusions:
The presentation will provide an update of where the project has got to so far and reflect on the strengths and challenges associated with co-production.
Patient or healthcare consumer involvement:
Throughout the research project people with dementia are at the centre: supporting design, development, testing and dissemination of research to help raise awareness of what quality of life and well-being means for them.
This presentation will discuss the co-production of two new quantitative measures of quality of life and well-being for people with dementia. Alternative measures have been criticised for not accurately reflecting the experiences of people with dementia, largely due to a lack of engagement with people affected with the condition during the development stages.
Objectives:
Co-production aims to create a shift from people 'being researched' to 'being researchers'. By moving away from a top-down approach to research design, we aimed to empower people with dementia to shape the research they are part of and equip them with the skills to actively participate.
Methods:
The research is part of a nationwide research project on living well with dementia. IDEAL included 1550 people with dementia and 1286 carers, with participants being asked a broad range of questions on living with dementia at yearly time points for two years. IDEAL-2 continues to follow up this cohort for another two years whilst also recruiting new participants, with a particular focus on under-represented groups. For the purpose of a co-produced sub-study, co-researchers worked together to isolate the key factors emerging from IDEAL qualitative data around quality of life and well-being; designed new questionnaires based on the refined data; and piloted the measures with other people living with dementia.
Results and conclusions:
The presentation will provide an update of where the project has got to so far and reflect on the strengths and challenges associated with co-production.
Patient or healthcare consumer involvement:
Throughout the research project people with dementia are at the centre: supporting design, development, testing and dissemination of research to help raise awareness of what quality of life and well-being means for them.