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New research to personalise care for people with dementia in care homes during COVID-19 pandemic

Published: 07 October 2020

The NIHR and UK Research and Innovation have awarded £1.2 million to support development of an innovative online programme to improve and personalise care for people with dementia in care homes, which have been hard-hit by the COVID-19 crisis. 

Many of the 400,000 people living in care homes in the UK have dementia, mental health or neuropsychiatric symptoms, and a number of physical illnesses. They are at particularly high risk of developing severe COVID-19, and providing support is challenging for care staff who are facing a difficult, distressing and isolated work environment. 

Led by the University of Exeter and King’s College London, this new research will draw on the most successful elements of the NIHR-funded Improving Wellbeing and Health for People with Dementia (WHELD) programme, one of the very few staff training programmes that is proven to improve lives for people with dementia in care homes. 

Clinical trials have shown that WHELD improved quality of life and mental health, and reduced the use of harmful sedative drugs, in people with dementia in care homes. This new funding will allow researchers to develop a digital version of the staff training programme, to meet the challenges presented by the COVID-19 crisis. 

Short, digestible and practical digital resources and tools that are easily accessible will be developed, which, with the support of a network of WHELD coaches, will create a community that allows carers to stay connected and supported at a distance. 

Specific adaptations to the programme in light of the COVID-19 crisis, such as peer networking and solution sharing, will be combined with the core elements of WHELD. These include focusing on person-centred care that involves the person with demetia in decision-making, personalised activities that are tailored to the residents’ interests, and reducing unnecessary sedative medications, known to increase risk of falls and death. 

The programme will first be tested in 160 care homes, followed by an evaluation of efficacy and cost effectiveness in a further 1,280 care homes, before making the programme ‘implementation ready’ for national care home roll-out.

Professor Clive Ballard, Dean and Pro-Vice Chancellor of the University of Exeter Medical School, said: “We urgently need to support care staff, who are going through an extraordinarily difficult time in trying to care for residents in hugely challenging circumstances. 

“Care home residents are among the frailest in society, and are at particularly high risk of dying from COVID-19. I’m delighted that this funding will help us to adapt the WHELD programme to a COVID-19 world, and roll it out swiftly, to provide the best possible support to residents and staff.” 

COVID-19 social distancing has been particularly challenging for care home residents with dementia, who might not be able to see their families and loved ones and may see staff in full PPE gear, which might be frightening. 

“This is expected to lead to increased emotional stress including anxiety, depression and night-time problems, which will lead to poorer physical health and wellbeing for care home residents,” said Professor Dag Aarsland, Chair of Old Age Psychiatry at the Institute of Psychiatry, Psychology & Neuroscience at King’s College London. “This project will address these challenges and help to improve the quality of life for people living with dementia in care homes, helping families and carers adapt to these challenging times better."

Professor Martin Knapp, NIHR's social care spokesperson and director of the NIHR School for Social Care Research, said: "Having staff who are skilled in offering person-centred care can make the world of difference to people living in care homes, as shown by the previous NIHR-funded research on the WHELD programme. I'm pleased our researchers are responding to the pandemic by adapting the programme for online delivery, as care homes are facing huge challenges in these difficult times."

How Pendennis residential home will test WHELD

Sam Ebden, Registered Manager at Pendennis residential home in Paignton, says staff are excited to sign up to the WHELD programme, particularly as they strive to continue to improve the service despite the significant difficulties presented by COVID-19 

She said: “The biggest challenge we faced was wearing PPE and the impact it had on the residents, some of whom have advanced dementia. The residents know that something’s amiss when relatives can no longer visit as they used to, and that’s certainly been unsettling for them. However the impact of the masks was more immediate, and they initially made it difficult for residents to recognise the staff team members. Many of the residents would still prefer us not to wear masks. 

“We’ve managed the staff team, the residents and their families through effective communication. We sensitively continue to communicate to all parties about the pandemic to help them understand why we are making changes. Naturally the residents with advanced dementia have not easily understood the challenges, and we have had to be additionally attentive to their emotional wellbeing. It has been an incredibly stressful time for care homes, having a strong team has helped us and has possibly ensured that we have remained COVID-19 free up to now. 

“We’re really excited to sign up to WHELD - our aim is to always improve, and give the best possible care to our residents. I’m really interested in the personalised care aspect of the programme. That’s something we try to achieve here – we encourage families to share residents’ life histories and stories and we work hard to engage them in activities that are relevant to them. For example, if someone is interested in gardening, we will encourage them to go out into our garden and or read a gardening magazine. Sometimes that engagement isn’t easy, and it’ll be great to get additional training to help us better deliver the required outcomes. 

“Despite so much research into dementia, there’s still so much we don’t know. It’s fantastic that this programme is evidence-based, and it has a track record of improving life for staff and residents. We pride ourselves on a high standard of care, and if we can improve that even more, that’s a win-win."

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