P4‐276: Health services development research with people with dementia: Key features, factors, and learning from a multi‐site, mixed methods study

Engaging with Patient and Public Involvement (PPI) representatives and recruiting participants (especially those living in residential care settings) present particular issues for projects involving people living with dementias and create challenges for research with this group. The PrOVIDe project was a multi-site, 2 stage, mixed methods project. Stage 1 gathered quantitative data on the prevalence of visual impairment (VI) among people with dementia; Stage 2 gathered qualitative data from people with dementia, carers (professional and family) and eye-health professionals. Administering this project enabled learning relevant to: recruiting to studies, collecting different types of data from participants with dementia, and communicating effectively through the course of the project with participants, family members, recruiters and health care professionals. The project involved a study team of 3, a management group of 6 and a steering group of 12. 20 recruitment sites in 6 regions across England supported the study team. In Stage 1, 808 participants with dementia were recruited, with 708 remaining in the study to have their eyes examined. Of those examined, 389 were living in their own homes and 319 were living in a residential care setting. Over 150 care homes participated in the study by facilitating residents to take part. In Stage 2, 36 interviews were conducted with participants with dementia, along with 5 focus groups with family carers and 5 focus groups with optometrists. One focus group and 11 interviews were conducted with professional care workers. The project benefitted from early involvement of PPI representatives, and in particular from the contributions of the PPI co-applicant and Steering Group member. Ensuring that participant communications are planned and reviewed, from the specific perspectives of participants and their carers was critical in managing recruitment and withdrawals. Liaison between study team and recruiters was key to managing targets. Shared solutions to problems and rapid responses to participant concerns were vital. This project was funded by the UK National Institute for Health Research Health Services and Delivery Research Programme (project number 11/2000/13) The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.