Norwich researchers are developing a digital support package for dementia carers in the UK

'Carecoach' will include online chapters with access to a healthcare professional.

Author: Helen DownPublished 14th Nov 2020

A digital support package for dementia carers is being developed by researchers in the East of England.

'Carecoach' is the name given to the UK version of a programme being adapted from the Netherlands.

There will be a number of online chapters carers can access at their own pace, with support from a healthcare professional.

Researchers at the University of East Anglia and the Norfolk and Suffolk NHS Foundation Trust (NSFT) have launched the project to improve the lives of dementia carers in the UK.

They will work with carers and healthcare workers to develop and test the support package thanks to £2 million of funding from the National Institute for Health Research (NIHR).

Professor Chris Fox is the lead investigator on the £2 million project at the University of East Anglia. He 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.

“We want to help carers improve their quality and life, mood and sense of being able to care well.”

“We will 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.

“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

Geoff has been married to Susie for 31 years, and in 2011 they first noticed a decline in Susie's short-term memory.

In spring 2012 they sought medical advice and Susie was eventually diagnosed with early onset Alzheimer’s. Geoff 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.”

“We joined this in 2014 and have taken part in several different studies run locally by NSFT and UEA over the last six years - all very interesting and enjoyable for both of us - the kindness and respect we have had from the researchers has been second to none.”

“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.”