Chance to help develop dementia support for family carers
Researchers at the University of East Anglia, University of Exeter and Norfolk and Suffolk NHS Foundation Trust are at the forefront of bringing a pioneering support programme for family carers of people living with dementia to the UK.
They are working with carers and healthcare workers to co-develop and test a new CareCoach support package thanks to £2 million in funding from the National Institute for Health Research.
The programme, which originated in the Netherlands, uses face-to-face sessions, a web-based home programme and support from a coach to help people adapt to changes in their relatives, and the emotional difficulties associated with dementia. The aim is to help family carers stay emotionally and physically well, which is crucial for both the carer and the person they care for.
An important part of this study is working directly with family carers to make sure the research and the CareCoach programme is accessible and meets the needs of families from all walks of life.
An advisory group of family carers meets regularly with researchers, online via Zoom, to talk about how the study is going and provide valuable insights into the realities of being a carer of a person living with dementia. This ensures that the CareCoach support package and the study itself, meets the needs of people in real life.
The team is now at the point of developing a research trial to test CareCoach. Juniper West, Research Development Lead for Older People’s Services at NSFT, said: “If you are a family carer, we want to hear your opinions. The advisory group warmly welcomes new members, from all backgrounds, family relationships and walks of life.” There will be help to join an online call and payment is £25 an hour.
The project is being led by Prof Chris Fox, from NSFT and the University of Exeter, and Dr Jane Cross from the School of Health Sciences at the UEA.
Prof Fox said: “We know that family carers provide significant support for people with dementia and it’s really important they get the right support. We want to help carers improve their quality of life, mood and sense of being able to care well.”
Previous research has shown that intervening early to support carers builds personal resilience and enhances their ability to cope.
In the Netherlands, the Partner in Balance project has reduced the burden and stress of caring for a family member or friend with dementia.
Prof Fox said the support package will include film clips and other materials to reflect the UK population and care situations.
“We are working with family carers and healthcare professionals to develop and test our new blended care approach to really make sure it works in real life,” he said.
Juniper said: “In 2018-19, our research team identified training and support for informal caregivers for people with dementia as a priority, so CareCoach addresses very important, locally expressed needs.”
A key member of the research team and the advisory group is Geoff Fenwick, a carer for his wife Susie. Geoff has been involved in the study from the very beginning. He said: “Being proactive in research has boosted my own mental health and wellbeing.”
Helen Morse, CareCoach Trial Manager at the UEA, said: “We would really value input in our research adapting and testing this programme. We would like to hear opinions and ideas to make sure our research is accessible to people caring for someone with dementia.”
Email helen.morse@uea.ac.uk is you would like to get involved in the advisory group. No previous research experience is necessary.
The next meeting is online via Zoom on 23 January 2024 11-12pm. Calendar invites can be sent to new members. A reminder with the Zoom link and agenda will be sent nearer the time.