Dementia carers helped to stay emotionally well with £2m 'Carecoach' package

The University of East Anglia and Norfolk and Suffolk NHS Foundation Trust (NSFT) are developing a new ‘Carecoach’ support package to help dementia carers stay physically and emotionally well.

The project which is being funded by nearly £2 million from the National Institute for Health Research (NIHR), is particularly crucial in current times as the pandemic has left many people with dementia and their unpaid carers feeling very isolated.

Dr Jane Cross from the School of Health Sciences at the University of East Anglia (UEA) said: “Around 700,000 family carers support 850,000 people in the UK with dementia.

“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 research team will build on work carried out in the Netherlands, where a ‘Partner in Balance’ intervention has already been shown to reduce the burden and stress of caring for a family member or friend with dementia.

Prof Chris Fox from Norwich Medical School revealed that the team are planning to develop a UK version of the Partner in Balance programme combining face-to-face sessions, a web-based home programme and support from a coach.

He said: “The Carecoach support package will include additional film clips and other materials to better reflect the UK population and care situations.

“We will work with family carers and healthcare professionals to develop and test our new blended care approach – to really make sure it works in real life.”

Prof Fox added: “Previous research has shown that intervening early to support carers builds personal resilience and enhances their ability to cope.”

Geoff Fenwick, a family carer and his wife Susie, are going to work alongside the team in delivering the Carecoach study.

Geoff has been married to Susie for 31 years, who was diagnosed with early onset Alzheimer’s in 2012. Geoff retired in 2015 so he could become Susie’s full time carer.

He said: “Acceptance I feel was probably the first and hardest step to take when coming to terms with dementia, once we had achieved that we were able to take a more proactive approach in adapting our relationship and lifestyle to the demands of dementia. Focussing on what we could do, not what we could no longer do.”

He added: “As a co-researcher and existing carer my involvement in the project will bring vital first-hand experiences to help model the training programme.

“Personally, it will be a boost for my own mental health wellbeing and hopefully I will learn a few new tricks along the way, as well as being able to share ideas that have worked for us. If you want to know the road ahead ask those coming back.”

The research initiative will be led by UEA and NSFT, in collaboration with the University of Bradford, London School of Hygiene & Tropical Medicine, the University of Nottingham, the University of Amsterdam, and Maastricht University.