Digital training program improves quality of life for care residents with dementia – even during the COVID-19 pandemic
The iWHELD programme supported care home staff in delivering personalised care and encouraging meaningful social interactions
Quality of life for people with dementia living in residential and nursing home care substantially improved after staff took part in a digital training programme that was specially adapted to Covid-19 restrictions. The training also led to a significant drop in the prescription of potentially harmful sedative medications to residents.
The iWHELD programme supported care home staff in delivering personalised care and encouraging meaningful social interactions. Through a digital platform featuring live coaching sessions led by trained coaches, the programme supported homes during the Covid-19 pandemic to enhance care and share best practices among peers.
Published Alzheimer’s & Dementia, the journal of the Alzheimer’s Association, the trial was delivered to staff supporting more than 700 residents with dementia across 149 residential homes in the UK, comparing iWHELD with usual care. In the iWHELD group, researchers found particular benefits in residents who contracted Covid-19, those who showed signs of agitation when the study began, and those taking psychiatric medications.
Led by the University of Exeter and King’s College London, and funded by UK Research and Innovation (UKRI), iWHELD is designed to support carers and residents by training staff in delivering personalised care, which puts residents at the heart of decision-making. The programme was specially adapted during the pandemic, so that it could be delivered remotely, with support available for care home staff, even in the most challenging circumstances for care homes.
Joanne McDermid, creator of the iWHELD platform and lead author of the paper, said: “Urgent action is needed to ensure care homes have access to dementia care training and support that is both high quality and shown to be effective. Every person deserves thoughtful and compassionate care and not everyone is receiving it. In response to the unfolding global pandemic, iWHELD was created as a ground-breaking, first-of-its-kind solution, placing care staff and people living with dementia at the heart of support for care homes and nursing homes. iWHELD leverages digital innovation to bring together stories, ideas, and communities. It’s the first programme to provide an effective, evidence based, affordable and scalable solution that can address the needs of care and nursing homes and critically, to improve the lives of the people with dementia.”
Katie Ives, manager of Stonebow House care home in Worcestershire, took part in the iWHELD training along with her management team. She said: “We all really enjoyed it, and it’s made a huge difference to some of our residents. As part of the training around personalised care, we’ve realised we need to change our approaches and even our demeanours to communicate effectively with residents – so if someone is quite reserved, being very bubbly is less effective and relatable to that person. We’ve always tailored our approach to residents, but now we offer a wider variety of activities and clubs to suit people’s interests in their lives, and we’re seeing some residents spend more time in communal areas and less time in their rooms as a result.”
Professor Clive Ballard, of the University of Exeter Medical School, senior author on the paper, said: “People with dementia living in residential and nursing home care are among the most vulnerable in society, and care homes and their staff perform an extremely challenging role. iWHELD is an effective, practical, and affordable programme that can enable staff to improve the lives of people with dementia and can be delivered nationally and internationally – even amidst a pandemic.”
The paper is entitled ‘Impact of the iWHELD Digital Person-Centered Care Program on Quality of Life, Agitation and Psychotropic Medications in People with Dementia Living in Nursing Homes during the COVID-19 Pandemic: A Randomized Controlled Trial’, published in Alzheimer’s & Dementia.
The research was supported by the National Institute for Health anc Care Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London, the NIHR Exeter Biomedical Research Centre, and the NIHR Applied Research Collaboration South West Peninsula (PenARC).
JOURNAL
Alzheimer s & Dementia
METHOD OF RESEARCH
Randomized controlled/clinical trial
SUBJECT OF RESEARCH
People
ARTICLE TITLE
Impact of the iWHELD Digital Person-Centered Care Program on Quality of Life, Agitation and Psychotropic Medications in People with Dementia Living in Nursing Homes during the COVID-19 Pandemic: A Randomized Controlled Trial’
ARTICLE PUBLICATION DATE
20-Dec-2023
Nearly 30% of caregivers for severe stroke survivors experience psychological distress
Post-traumatic stress was worse among Mexican American caregivers compared to white caregivers.
Peer-Reviewed PublicationStroke is an abrupt, devastating disease that instantly changes a person’s life and has the potentially to cause lasting disability or death. However, the condition also has profound effects on the patient’s loved ones — who are often called to make difficult decisions quickly.
A new study led by Michigan Medicine finds that nearly 30% of caregivers of severe stroke patients experience high levels of anxiety, depression or post-traumatic stress during the first year after the patient leaves the hospital.
The results are published in Neurology.
“As physicians, we usually concentrate on our patients, and it is important to recognize that caregivers may have long-term consequences from a loved one’s severe illness,” said Lewis Morgenstern, M.D., professor of neurology, neurosurgery and emergency medicine at University of Michigan Medical School and professor of epidemiology at the U-M School of Public Health.
“This research suggests that depression, anxiety and post-traumatic stress are common among family members who make life and death decisions for their loved ones who are very sick. Post-traumatic stress may be more common in Mexican American caregivers, who made up about two-thirds of the study population.
The prospective study enrolled stroke survivors and their surrogates in Nueces County, Texas, who made decisions about life sustaining treatment after severe stroke between April 2016 and October 2020.
Between 17 and 28% of caregivers reported high scores on measures of psychological distress, which covered anxiety, depression and PTSD. Up to 16% of caregivers experienced all three conditions related to their role.
Post-traumatic stress was worse among Mexican American caregivers compared to white caregivers. Depression scores also improved more rapidly over time for white caregivers.
“There are important support systems for families in hospitals which include nurses, social workers and the patient’s medical team,” Morgenstern said.
“The role of family-centered care has received a lot of traction in recent years, and this research emphasizes how important that is.”
Additional authors include Christopher J. Becker, M.D., Carmen Ortiz, Guanghao Zhang, Kevin He, Ph.D., Erin Case, and Darin B. Zahuranec, M.D., all of University of Michigan, and Rebecca J. Lank, University of Iowa Carver College of Medicine.
This study was funded by NIH R01NS091112 and R01NS38916.
Paper Cited: “Long-term psychological distress among surrogate decision makers for Mexican American and non-Hispanic White patients with severe stroke,” Neurology DOI: 10.1212/WNL.0000000000207960
JOURNAL
Neurology
METHOD OF RESEARCH
Observational study
SUBJECT OF RESEARCH
People
ARTICLE TITLE
Long-Term Psychological Distress Among Surrogate Decision Makers for Mexican American and Non- Hispanic White Patients With Severe Stroke
ARTICLE PUBLICATION DATE
19-Dec-2023
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