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

This research aims to identify the factors that help or hinder caregivers of people with dementia to use online support tools. It also aims to create strategies to support caregivers to use them. We will use two internet-based resources as examples in our work: the DemCon website, which provides advice on dementia and continence, and FTDToolkit, which will be a psychoeducational intervention to support management of behavioural symptoms in people with frontotemporal dementia (FTD) and FTD with Motor Neurone Disease (FTDMND).

Whilst some previous research in this area exists, it has been based mostly on surveys and has not included caregivers who do not go online. We will use interviews and focus groups so that caregivers can discuss all of the factors that affect their use of online support tools. This could include their personal situation and attitude towards online support tools, as well as thoughts about the tool itself. We will ensure that caregivers who are less confident or less able to use online websites are also included.

We will also investigate the factors that help or hinder caregivers of people with a specific type of dementia – young onset dementia or frontotemporal lobar degeneration, which includes, but is not limited to, FTD. These sub-types of dementia often affect people at a younger age and can have different symptoms to other, more common types of dementia. This specific group of caregivers has not previously been discussed in existing research on this topic.

We will use our findings on the factors that help or hinder caregivers of people with dementia to use online support tools to create strategies to support them. We will do this in workshops with caregivers so that we create them together.

Managing continence issues and behavioural changes can be difficult topics for caregivers to discuss. This project will provide insight into how online support tools can help support conversations about challenging topics.

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.

Outcomes

This research will inform the roll-out of DemCon and development of FTDToolKit, to promote their successful adoption by caregivers. Our findings will also be relevant to the development and roll-out of other online support tools for caregivers of people with dementia. We will share our findings with caregivers, academics, support tool developers and others involved in the care of people with dementia. We will produce reports, write scientific articles, present at conferences, and work with national and local dementia organisations to share our findings.