ENRICHEnabling Research in Care Homes
“When you woke this morning the clothes you planned to wear were gone. The shower gel smelt weird – it wasn’t your usual. There was no hairdryer to dry your hair. You wanted to make a hot drink but you had no access to a kettle … How is your day going? How do you feel? Welcome to the lives of many people with dementia living in care homes.”
This is the opening of a new training programme for care home staff developed by Dr Kellyn Lee, chartered psychologist and research fellow in ageing and dementia at the University of Southampton. Called material citizenship, it aims to get staff thinking about the importance of mundane, functional objects to our lives and identities, and how giving their residents agency over these things can significantly improve their wellbeing.
Charlotte Gilbert the general manager and the care home’s senior care assistant, Becci Fletcher, were among five staff from Brendoncare Knightwood who participated in the first one-day material citizenship course (moved online due to Covid). They credit the training with improving their practice as well as making them feel good about their work and the difference they can make – a welcome morale boost, mid-pandemic. Crucially, they say, it has “definitely” made life better for people in their care.
“One of our residents really wanted to polish her own room with a particular polish,” says Gilbert. Initially this was seen as unnecessary: the cleaning staff were there to clean. “But now we’ve got her the polish she wanted. She polishes her room and it makes it smell like home.”
“Another resident goes around collecting up all the trays after breakfast,” adds Fletcher. “Before the training we would say, ‘don’t worry, we’ll do that’ but now we let her do it. She enjoys it. She feels she’s looking after people and it gives her more sense of worth.”
Lee has now secured another year of funding, from the National Institute for Health Research’s Applied Research Collaboration Wessex, to roll out the training to more care homes. Sessions for other Brendoncare homes and Hallmark Care Homes will begin in February with more to follow.
Fletcher and Gilbert are in no doubt about the value of the rollout: “We feel passionately that everybody should have this training. If you take people’s everyday things away they lose independence and who they are. It may only mean changing 10 minutes of the day but it can make a massive difference.”
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“An evidence-based programme for care home residents living with dementia improved their quality of life and reduced agitation and other symptoms of dementia. A major study across the UK found that the Well-being and Health for People Living with Dementia (WHELD) programme was effective and cost less to deliver than usual care.
The WHELD programme supports care home staff to deliver patient-centred interventions for residents with dementia. It seeks to reduce reliance on antipsychotic drugs and uses social interaction, personalised activities and exercise to improve care.
Most person-centred interventions used in care homes are not based on scientific evidence. WHELD was tested in a large clinical trial, which showed that it improved quality of life for people with dementia. The programme also reduced agitation and the overall burden of neuropsychiatric symptoms such as depression or aggression. A reduction in the number of hospital and GP visits made the approach less expensive to deliver than usual care.
What’s the issue?
A third of people with dementia in the UK (288,000) live in care homes. Those in care homes tend to have more severe dementia than those living in the community. Agitation and a range of other behavioural and psychological symptoms make it challenging to care for these people.
Person-centred care is the gold standard of care for people with dementia. Yet previous research has found that many care home residents have as little as two minutes of social interaction each day. There is currently no effective, evidence-based intervention to help staff care for these patients without using drugs.
In the first stages of this programme, researchers reviewed 40 studies on psychosocial interventions for people with dementia in care homes. These studies supported the use of person-centred approaches such as reminiscence therapy, in which photographs or other mementoes are used to help someone recall life events and memories. Walking, seated exercise, circle dance or other pleasant activities of the person’s choice were also found to help.
The researchers then looked at training manuals for person-centred care in dementia. Only four out of 170 manuals described interventions with proven benefits.
The team developed the first version of the WHELD programme based on the most practical and effective therapies. It combined person-centred care, management of agitation and non-drug approaches. A first randomised controlled trial tested this version of WHELD in 16 care homes over a period of nine months. It found that reviews of antipsychotic medication halved the use of these drugs. This increased the behavioural and psychological symptoms of dementia unless the medication review was combined with personalised activities. The combination of review plus social interaction significantly improved quality of life and reduced the risk of dying among people with dementia by 30%. Exercise reduced symptoms of agitation.”
For more details on this programme click here
The British Society of Gerontology Autumn Symposium Care Homes Research Special Interest group
“The prevalence of dementia is predicted to increase as our population ages. As the dementia progresses, many older adults with dementia will require advanced care – typically offered from within a residential care setting. Given this is the case for millions of people worldwide, it is important to explore ways in which these settings can support residents’ independence and wellbeing for as long as possible. In this symposium, supporting independence and wellbeing will be explored from two distinct, but related, perspectives.
24 November 12:30pm-2:00pm (UK Time)
Material Citizenship: Functional objects for meaningful lives (Dr Kellyn Lee).
Materiality has become an increasingly important topic in sociological studies of healthcare. How objects support the identity of people with a dementia in care homes is an emerging area. Whilst previous research had tended to focus on sentimental or cherished items (such as photographs and keepsakes) often considered for their comforting and ‘homely’ affordances, less attention has been given to functional objects (such as a pair of curling tongs or a vacuum cleaner) as a mechanism to maintain identity and encourage activity.
It is widely believed that older people moving into a care home are encouraged to bring items in from home however, only certain items are encouraged and these often carry caveats. Once in a care home people may often find themselves having to adjust their day-to-day activities to fit the task-orientated routine of care home life. The lack of personal possessions and access to functional objects can amplify barriers for residents to reach their optimal performance, reduce agency and increase dependency on care home staff.
This session introduces Material Citizenship as a conceptual framework which aims to encourage care home staff to consider the importance of functional objects in care practices.
The role of exercise in preventing falls and fractures for long-term care residents with dementia (Dr Caitlin McArthur).
Current evidence for the effectiveness and role of exercise in fall and fracture prevention is mixed. Recent systematic reviews have identified that exercise as a single intervention does not prevent falls in long-term care, but exercise as part of a multifactorial intervention (e.g., medication review, environmental assessment) does. The evidence for exercise as a fracture prevention strategy in long-term care is limited. Most studies to date do not include residents with significant cognitive impairment making the generalizability of the evidence limited to residents with good cognition. Further, few studies have examined the ethical decisions around encouraging independent mobility which may increase the risk for falls and fractures.
This session will provide an in-depth discussion of exercise as a fall and fracture prevention strategy in long-term care, including the evidence about its effectiveness and common barriers to implementing strategies. Content will focus on recent research findings about fall and fracture prevalence, risk factors, prevention, injury minimization, and how dementia contributes to risk.
Dr Kellyn Lee (email@example.com)
Kellyn is a Chartered Psychologist and Research Fellow in Ageing and Dementia, and Co-Director of the Alzheimer’s Society funded Doctoral Training Centre for Dementia Care – University of Southampton, UK.
Kellyn is responsible for the development and management of the Enabling Research in Care Homes (ENRICH) toolkit website and has experience of working on many ageing and dementia research projects. She currently leads on an impact project working with a care organisation to develop Material Citizenship as an online training programme for care home staff.
Dr Caitlin McArthur (firstname.lastname@example.org)
Caitlin is an Assistant Professor in the School of Physiotherapy at Dalhousie University in Halifax, Nova Scotia, Canada. Dr McArthur’s research focuses on improving the effectiveness of and access to rehabilitation for people living with chronic health conditions across the continuum of care, particularly home and long-term care. She is interested in fall and fracture prevention and improving functional mobility.
The session will be moderated by Dr Chad Witcher, Senior Lecturer, School of Sport, Health and Exercise Science, University of Portsmouth (email@example.com). Chad is the Special Interest Group’s Care Home Sector Engagement Co-Lead. He has an interest in physical activity engagement and promotion within care home settings.
About the Special Interest Group (SIG):
Our SIG aims to strengthen research, policy, and practice in all areas of care homes research, including those related to staff, residents, family members and carers, as well as the home environment, and its links with external organisations. We also aim to develop complementary working relationships with the other SIGs, as well as other groups and organisations that support care homes research.
If you would like to be part of the Care Homes Research SIG, please contact the SIG at BSGcarehomes@gmail.com
Please also follow us on Twitter @BSGcarehomes
“A 2-year study is being carried out by researchers at King’s College London university investigating the use of ‘residential respite’ services (e.g. a short stay in a care home) which provide a break for both people with dementia and their carers. The research focuses on short stays in care homes (known as residential respite).
We want to hear about the arrangements, expectations and experiences. What do people get out of them, and why do some people decide it is not for them? We would value your help so we can better understand what works well and what could be better.
We would talk to you via phone or Zoom/Skype and offer you £10 to thank you for your time. Please email Laura Cole if you would like more information or might want to take part: Laura.firstname.lastname@example.org
For more details on this study click here
The study is funded by an Alzheimer’s Society grant
The webinar takes place on Tuesday 13th October from 1.00 – 2.00pm and includes two presentations focusing on care homes:
Investigating “optimal time”: Multiple perspectives on the timing of moving into care homes for people living with dementia
Kritika Samsi (King’s College London)
Regulator quality ratings and care home residents quality of life
Ann-Marie Towers (University of Kent)
Time for questions and discussions
NIHR SSCR’s Webinars are free to attend with pre-registration.
To register click here
The LTCcovid attempt to present comparable data and statistics on the effect of COVID-19 within long-term care (LTC) settings in the UK, with a particular focus on care homes.
‘The impact of the COVID-19 pandemic on the oldest old, especially those within care home settings, has been devastating in many countries. The UK was no exception. This article reviews the path of the COVID-19 pandemic across the UK long-term care (LTC) sector, indicating how it evolved in each of the four home nations. It prefaces this with a description of LTC across the UK, its history and the difficulties encountered in establishing a satisfactory policy for the care of frail older people across the home nations.’
The paper makes several contributions:
- First, it provides an up to date estimate of the size of the adult care home sector across the UK – previous work has been bedevilled by inaccurate estimates of the number of care home places available.
- It assembles the limited information that is available on delayed transfers of care and testing of care home residents, both of which played a role in the evolution and consequences of the pandemic.
- It estimates the number and share (the P-Score) of “excess deaths” in care homes in each of the home nations. The P-Scores provide measures that allow comparisons across care home populations of different size.
‘Not only do we discuss the number of individuals affected, we also compare the proportions of care homes in each of the home nations that experienced a COVID-19 infection. The paper also discusses deaths of care home residents outside care homes, largely in hospitals. It reviews the sparse information on deaths at home of people who were receiving social care.’
For access to the full report click here
The University College London has published a new guide for family and/or friends caring for a person living with dementia to support decision-making during COVID-19 and beyond:
‘We are an experienced team of researchers and health and social care professionals including GPs and Psychiatrists from University College London and King’s College London, and a group of people living with dementia and family carers. We have used the latest evidence from research and clinical practice, together with the views and experiences of people with dementia and family carers. We have received expert input and this document has been reviewed by GPs, palliative medicine doctors, nurses, geriatricians, psychiatrists, and social care professionals. This project has been supported by Marie Curie, Alzheimer’s Society, Dementia UK, and Royal College of Nursing who have all contributed to the development and reviewed this document.’
To access the guide please click here
New research carried out by Dr Eva Cyhlarova, Dr Michael Clark and Professor Martin Knapp from the Care Policy and Evaluation Centre at the LSE identify key barriers highlighting the variation and changing nature of the social care sector in England, with many providers lacking capacity for research participation.
“The Review explored challenges in recruiting organisations and individuals for adult social care research and identified possible strategies to address them from the perspective of social care. Some of the recommendations set out by the Review – such as investment in research capacity-building and providing research support costs to organisations – may help.
Challenges for researchers included the need to adjust recruitment strategies because of the variation among provider organisations and as a result of the rapidly changing nature of care delivery in England. Interviewees also identified a lack of understanding of research benefit and organisations’ gatekeeping arrangements as common difficulties.
The seventeen senior social care researchers interviewed about their experiences also recommended: ensuring effective involvement throughout studies; building partnerships with individuals, groups and organisations; and offering financial and other incentives to organisations for their participation. Using a variety of recruitment strategies and offering a range of participation routes were also suggested.
The Review recognised the growing investment in recent years in developing capacity in adult social care research and highlighted the need for further investment if the sector is to respond to the rising need for robust research evidence to help improve policy, practice and outcomes.
Professor Martin Knapp, Director of NIHR SSCR, said:
Recruitment into research studies can be very difficult, and social care researchers have often struggled. In this Review we have tried to identify the main challenges, and what solutions other researchers have suggested. It is now important for research funders and researchers to explore these recommendations to support adult social care research. It would be great to hear from organisations and individuals on their experiences of recruitment (or not) into studies.”
For access to the full report click here
If you have used a phone, tablet or laptop to ‘visit’ a friend or relative in a UK care home or hospital during COVID-19 and would be interested in advising on a new project that will explore the impact of visiting in this way please contact Laura.Goodwin@uwe.ac.uk