Norfolk and Suffolk NHS Foundation Trust is working with the University of East Anglia and the University of Exeter to pioneer a support programme for family carers of people living with dementia in the UK.
The trust and researchers from the universities are working with carers and healthcare workers to co-develop and test a new CareCoach support package, with £2 million in funding from the National Institute for Health Research.
The programme originated in The Netherlands and aims to help family carers stay emotionally and physically well, for both their own benefit and also for the person they care for. It uses face-to-face sessions, a web-based home programme and support from a coach to help people adapt to the changes in their relatives and the emotional load of caring for a loved one with dementia.
Professor Chris Fox, Norfolk and Suffolk NHS FT is co-leading the project. He 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 into the impact of caring for someone with dementia has found that intervening early to support carers helps build personal resilience and enhances their ability to cope with the demands. In the Netherlands, the Partner in Balance programme, helps to reduce the burden and stress of the caring role.
The work in developing the support programme heavily involves working directly with family carers to ensure the CareCoach programme is accessible and meets the needs of a diverse mix of families.
An advisory group of family carers meets regularly with researchers online, to discuss how the study is going and to provide valuable insights into the realities of caring for someone with dementia. This helps to ensure the support package will meet the needs of people in real life.
Juniper West, research development lead for older people’s services at Norfolk and Suffolk NHS FT, 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.”
The team is now at the point of developing a research trial to test CareCoach.