£1.2 million in government funding will help researchers develop an innovative online programme to improve and personalise care for people with dementia in care homes, which were 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.
The award, from the National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) will fund the development of a new programme to improve and personalise care. Led by the University of Exeter and King’s College London and involving the universities of East Anglia and Hull, and the London School of Economics, the research is also funded by Torbay Council and the Schroder Foundation, and supported by Alzheimer’s Society. The study will draw on the most successful elements of their 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.
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 people with dementia and other 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 programme to a COVID-19 world, and roll it out swiftly, to provide the best possible support to residents and staff.”
Professor Dag Aarsland, Chair of Old Age Psychiatry, Institute of Psychiatry, Psychology & Neuroscience, King’s College London, said: “The Covid-19 related social distancing has made it particularly challenging for care home residents with dementia. They might not be able to see their families and loved ones, and may see staff in full PPE gear, which might be frightening, without fully understanding the reasons behind these changes. This is expected to lead to increased emotional stress including anxiety, depression and night-time problems, which again will lead to poorer physical health and well-being for care home residents. 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.”
Clinical trials have demonstrated that WHELD improved quality of life and mental health, and reduced the use of harmful sedative drugs. The staff training programme will be adapted to the needs presented by the COVID-19 crisis, and a digital version of the programme will be provided to almost 1,500 care homes nationwide, with support provided virtually.
WHELD programme lead Joanne McDermid, of the University of Exeter, said: “This study is all about building connections and the importance of community, which are especially vital in a time of isolation and social distancing. It’s about creating more opportunities for meaningful engagement and interaction both with people living with dementia in care homes as well as for care staff seeking peer to peer connection across the care home sector. Being able to share what you’ve learned with other people makes for a much richer experience.”
Professor Chris Fox UEA Old Age Psychiatrist (intervention advisor on the original WHELD programme) “As a front line clinician and academic, digital WHELD training for care homes will support mental health and primary care services deliver better care to residents which has been affected by COVID-19.”
Professor Esme Moniz-Cook, University of Hull Old Age Clinical Psychologist (co applicant on the original WHELD programme), said: “Care homes have been hard-hit by the COVID-19 crisis. Since the lockdown in March, I have worked with huge numbers of families, care staff and care homes to solve problems associated with reduced social interaction such as dealing with loneliness and issues for staff in balancing their work and personal family lives. I am hopeful that development of this much-needed, innovative online programme will improve psychological well-being for both residents and care-staff, through maintained relationships – including those with relatives, and access to a wider network of support.”
The platform aims to bring together conversations and resources to share stories and solutions to the challenges care homes face. Short, digestible and practical digital resources and tools that are easily accessible and supported by a network of WHELD coaches will create a community that allows us to stay connected and supported at a distance.
The first step will be to develop specific adaptations to the programme in light of the COVID-19 crisis, such as peer networking and solution sharing. They will combine with the core elements of WHELD, focussing on person-centred care which involves the resident 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.
Within four weeks, the programme will be made available to 160 care homes. The team will evaluate outcomes relating to staff mental health and attitudes, and residents’ quality of life, their attainment of care goals, and use of sedative medications. Building on the findings, the team will evaluate efficacy and cost-effectiveness in 1.280 care homes, before making the programme “implementation ready” for national care home roll-out.
Miguel Vasconcelos Da Silva RN, Dementia Theme Manager, Department of Old Age Psychiatry, King’s College London, added: “The Care Home Research Network (CHRN), a community of care homes across England, has been a key structure facilitating and enabling research. The CHRN has been pivotal in enabling and supporting the development and delivery of the WHELD programme, which was well received by care homes and help them deliver person-centred care.
“It’s great to see the WHELD programme continuing to develop and excel in providing the much-needed support for care homes during this difficult time. I hope the WHELD programme will be welcomed by the care homes, particularly in the current challenging times and with limited support and help available.”
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.”
Sam Ebden, Registered Manager at Pendennis residential home in Paignton, South Devon, 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 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.”