Norfolk leads £2m project to support those caring for people with dementia
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Researchers in Norfolk are leading a new £2m project to improve the lives of dementia carers across the UK.
The blended care initiative aims to help dementia carers stay emotionally and physically well – which is crucial for both them and the person they support.
The project is particularly important in the midst of the coronavirus pandemic, which has left many people with dementia and their carers more isolated than ever.
Run in conjunction with the Norfolk and Suffolk NHS Foundation Trust (NSFT), the project is being led at the University of East Anglia by Dr Jane Cross and Prof Chris Fox from Norwich Medical School.
They are working with carers and healthcare workers to co-develop and test a new ‘Carecoach’ support package – thanks to almost £2m in funding from the National Institute for Health Research (NIHR).
MORE: Son takes 20,000 pictures of mum’s final years fighting dementiaDr Cross 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 coronavirus pandemic has put an additional stress on carers, many of whom are older, vulnerable or shielding. It means they can become even more isolated and cut off from their wider support network of family, friends, health services and support groups.
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Prof Fox said: “We know that family carers provide significant support for people with dementia with very limited support for them. But it’s really important that carers get the right support too.”
MORE: Age UK and Age Concern worried for elderly shielders in NorfolkPrevious research has shown that intervening early to support carers builds personal resilience and enhances their ability to cope.
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.
The planned UK programme will combine face-to-face sessions, a web-based home programme and support from a coach.
Prof Fox 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.”
Geoff and Susie Fenwick’s story
Geoff Fenwick has been married to Susie for 31 years. In late 2011 they first noticed a decline in Mrs Fenwick’s short-term memory. In spring 2012 they sought medical advice and she was eventually diagnosed with early onset Alzheimer’s.
Alzheimer’s affects people in different ways, in Mrs Fenwick’s case she became anxious and withdrew from friends. She had taken early retirement and was at home on her own.
Geoff, who will be a co-researcher on the new Carecoach study, retired in 2015 so he could become his wife’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. Focusing on what we could do, not what we could no longer do.”
As a co-researcher and existing carer he hopes to bring vital first-hand experiences to the project helping 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,” he said.