Strengthening dementia care by delivering a UK‑adapted, evidence‑based support programme that improves carers’ wellbeing, enhances care pathways and enables wider, scalable implementation across health and social care.
Why is the research needed?
Dementia is a deteriorating condition where the person loses one ability after another. Caring for someone with dementia puts enormous strain on the family carer’s energies, resilience, physical and mental well-being and family relationships. The carer’s ability to stay emotionally and physically well is crucial for both the carer and the person with dementia. Preparing for such change is important and can be supported. Recently, face-to-face support with online training for carers, the ‘Partner in Balance’ (PiB) programme, was developed in the Netherlands. This was positively evaluated, adding flexible access, content and usability to traditional support including leaflets, individual and groups.
What are we doing?
PiB will be ‘co-developed’ with family carers and healthcare professionals, to agree what to include in the PiBUK programme, to make it work in real life and help people use it. We will produce additional film clips and other materials (as needed), to better reflect the UK population and care situations. We will test and adapt PiBUK to be acceptable and practical for carers to use, in a feasibility study in seven sites. Then test the effects of PiBUK, in a randomised controlled trial in up to 30 sites, on carers’ sense of being able to care well, their mood and quality of life. We will collect and compare these measures at baseline, and then after 6 and 12 months.
How are we working with communities, services and organisations?
We have worked with people with dementia and their families (one carer is a co-applicant) to develop the topic in focus groups and interviews. We carried out a national survey of 400 carers from Together In Dementia Everyday (TIDE) to find out how important the topic was to them and how to shape the study. This led to a design codeveloping PiBUK to ensure it is relevant, accessible and engaging and to choose measures of outcomes which carers see as important. A steering group will have two carers supported to oversee the research with continued support from carers in TIDE and the Alzheimer's Society. We will work closely with Dementia UK, the Alzheimer’s Society and local NHS services to align PiBUK with existing care pathways and ensure it can be delivered by existing staff following appropriate training.
What will the impact and benefits of this research be?
This research will deliver an evidence‑based, UK‑adapted carer support intervention that is acceptable, accessible and scalable. It will also provide robust evidence on the clinical and cost effectiveness of PiBUK within the NHS, along with a practical training programme that enables existing staff to deliver carer support. By supporting carers earlier and more effectively, PiBUK has the potential to improve outcomes for both carers and people with dementia, reduce carer stress and burden, and strengthen dementia care pathways.
If the evaluation shows that PiB UK is more effective than usual care alone for carers of people with dementia, either clinically and/or in terms of cost, we will apply for training and implementation funding so that the intervention could be fully disseminated and rolled out in clinical practice through memory services, clinical psychology, and IAPT services within the NHS.
What do we have planned for knowledge mobilisation and implementation?
Knowledge mobilisation is embedded throughout the project. Findings will be shared through co‑produced materials for carers, practitioners and service providers. They will also be disseminated locally and nationally through academic networks, conferences and professional events. In addition, findings will be communicated through open‑access academic publications and presentations, including those hosted by Alzheimer’s Society and TIDE, as well as through public engagement via press and social media.
To support real‑world implementation, we will hold policy workshops with service commissioners and provider organisations to explore how PiBUK can be adopted within NHS and social care settings. An expert‑designed training programme will be developed to enable staff to deliver PiBUK effectively. If PiBUK is shown to be clinically and/or cost effective, we will seek further funding to support wider training, implementation and rollout across the third sector, NHS memory services, clinical psychology and IAPT services.
Related papers, outputs and resources
Visit the project webpage here
- Results from the studies will be written up it reports and journals.
- Developing a PiB UK intervention that is accessible to carers of people with dementia and that can be delivered by existing staff following training.
- Creating an expert-designed, acceptable and efficient training programme for training staff in PiB UK.
Who is involved?
- Project Principal Investigator: Dr Jane Cross, University of East Anglia
- Project Principal Investigator: Professor Chris Fox, University of East Anglia and University of Exeter
- Professor Jan Oyebode, University of Bradford
- Dr Bonnie Teague, Norfolk and Suffolk NHS Foundation Trust
- Dr West, Norfolk and Suffolk NHS Foundation Trust
- Dr Ridel, Norfolk and Suffolk NHS Foundation Trust
- Dr Lussignea, Norfolk and Suffolk NHS Foundation Trust
- Professor Lee Shepstone, University of East Anglia
- Dr David Turner, University of East Anglia
- Dr Bridget Penhale, University of East Anglia
- Dr Fergus Gracey, University of East Anglia
- Professor Fiona Poland, University of East Anglia
- Professor Carl May, London School of Hygiene and Tropical Medicine
- Dr Harrison Dening, Dementia UK
- Professor Martin Orrell, University of Nottingham
- Professor Marjolein de Vugt, Maastricht University in the Netherlands
Get in contact
Email Professor Chris Fox at Chris.Fox@uea.ac.uk.
