Chief investigator: Prof Chris Kipps Neurologist, Clinical Director R&D University Hospital Southampton

Dr Sarah Fearn Senior Research Fellow NIHR ARC Wessex (Ageing & Dementia) University of Southampton

Team:

Prof Cathy Murphy, Professorial Fellow Research, School of Health Sciences University of Southampton

Prof Eneida Mioshi Professor in Dementia Care Research University of East Anglia NIHR ARC East of England

Jane Ward Dementia Friendly Hampshire

Amanda Wollam Public contributor with personal and professional (social care) experience of caregiving to people with dementia

Start: 1 October 2024

End: 31 March 2026

Partners: Dorset HealthCare University NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, University of East Anglia / NIHR ARC East of England, Dementia Friendly Hampshire, My Dementia Support.

Our research

We found that there were seven factors that influenced how able and/or willing care partners were to engage with online tools. Care partner-related factors included time, emotional impact & preparedness, support networks and signposting, personal preferences, the relevance and sensitivity of information, and digital access and skills. Website-specific factors included design and usability, as well as trust and credibility.

Public involvement

We are working with caregivers of people with dementia and local dementia charities in this project. On our team, we have two public contributors who both have lived experience of caring for someone with dementia. They will help us to design and carry out the research, to make sure it is relevant to caregivers and benefits them.

60 caregivers will participate in the research in interviews, focus groups or workshops.

What we did with our new knowledge

We have worked with the research teams / developers of the DemCon website and the FTDToolkit (both internet-based support tools) to improve their tool.

We have worked with participants to co-produce recommendations for the design and implementation of internet-based support tools for carers of people with dementia in the future.

We are connecting with other research teams / developers of internet-based support tools to advise on their design and implementation (including in France and Australia).

We are looking to share the findings widely with research teams / developers working in this area to ensure design and implantation of these resources is maximised.

We have contacted national charities and funders in the area to make them aware of our findings.