ENRICHEnabling Research in Care Homes
“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
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
New findings from a study exploring whether people with an intellectual disability are becoming less eligible for services in the age of austerity show that “Over 40% of people with learning disabilities lost care and support over the past decade as a result of cuts to social care funding.”
Professor Rachel Forrester-Jones and colleagues at the University of Kent, Tizard Centre, analysed the impact of austerity on the lives of people with learning disabilities. The NIHR funded study “highlights ‘significant challenges’ in terms of cuts to services and support which arose for those with learning disabilities since 2008.”
By “mapping the experiences of cuts to services introduced in 2008 for 150 people with learning disabilities the research team found:
- 42% reported they had lost care.
- 14% reported that their care had changed – but not reduced.
- 36% reported their care had stayed the same.
- 7% said their care had improved.
Most significantly, they found that those who had lost care were engaging in significantly fewer activities. These individuals scored lower on the Quality of Life index, which measures individual wellbeing, and had significantly lower self-esteem. Three quarters (74.8%) of the sample also scored highly for having ‘clinically significant’ anxiety.
Overall those who had lost care reported a reduction in daily activities – experienced particularly when day centres closed. They also reported an increased likelihood of feeling lonely or bored as well as a general loss of aspirations for their future.”
To access the full report please click here
New research from Aston University, in collaboration with the universities of Bradford, Oxford, Sheffield, and Wollongong and the NHS, has been published in the journal BMC Geriatrics.
“The NIHR funded study provides new insight for clinicians such as GPs and pharmacists to help them manage their patients’ medication more effectively.
With the over-70s and people with existing medical conditions being encouraged to ‘shield’ or self-isolate in lockdown as much as possible, there are concerns many could be avoiding seeking help from GPs and pharmacies in managing multiple medications, known as ‘polypharmacy’.
The team behind the MEMORABLE (MEdication Management in Older people: Realist Approaches Based on Literature and Evaluation) study, led by Dr Ian Maidment, reviewed existing academic literature and carried out 50 in-depth interviews with older people, their family carers and health and care practitioners.
The researchers identified five ‘key burdens’ faced by older people and their family carers. These included ‘ambiguity’, where the purpose of medicines was not explained clearly, through to ‘fragmentation’ from having to deal with lots of different health and care practitioners and ‘exclusion’ when older people and family carers were not involved in care decisions.
In response, the team proposed a five-stage framework for clinicians to help older people and family carers manage medication more effectively. It places greater emphasis on the need for regular reviews of the medications older people are taking involving patients and their carers – something that isn’t always done routinely at present.
Dr Ian Maidment, from Aston University’s School of Life and Health Sciences, said:
“The reality is that many older people are taking what amounts to a ‘shopping list’ of different medicines. They may all be necessary, but older people and their family carers have told us what a huge burden it can be to remember how and when to take them all. And that was in ordinary times without the added pressures of lockdown.
“What we’re hoping to show with this study is that practitioners need to be aware that the burden and risk with medication is often hidden. There needs to be a simpler way of identifying people who are struggling and more emphasis on fitting managing medication into older people’s day-to-day lives. When prescribing new drugs, GPs will often consider things like side effects, but they equally need to think about how someone will actually manage taking them.”
Jo Rycroft-Malone, NIHR Programme Director and Chair of the Health Services and Delivery Research (HS&DR) Programme said:
“This research provides important, usable insight into the issues facing older people when it comes to managing their medication. The proposed five step approach will be very useful to practitioners when working with patients and their carers particularly at a time when people may be more concerned about asking for help.”
This study was funded by the NIHR Health Services & Delivery Research programme.”
“The BSG Care Homes Research Special Interest Group (SIG) evolved from ideas shared between delegates at the BSG Conference in Liverpool in 2019. Under the leadership of an enthusiastic committee, the SIG took shape during the autumn of 2019 and now brings together academics, practitioners and other stakeholders with a common interest in care home research. The 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. It aims to provide platforms for discussion and debate; facilitate the development of research collaborations and funding proposals; increase research capacity; promote methodological development around the novel challenges in care homes research; and support the dissemination and application of research findings to improve the lives of residents, carers and other stakeholders.
This inaugural Care Home Research SIG symposium reflects these aims, providing an opportunity to hear about and discuss a range of exciting research studies, and explore opportunities for partnerships and collaborations that all serve to enhance the quality of life in care homes. We will also be considering how research in care homes can best be supported In light of the ongoing coronavirus pandemic.
- Presentation: Partnership working in Care Homes Research: the role of the SIG. (Professor Christine Brown Wilson, Queens University, Belfast).
- Presentation: Volunteer-led Behavioural Activation for treatment of depression in care homes. (Associate Professor Christina Bryant, University of Melbourne).
- Presentation: Sativex® for the Treatment of AgitatioN in Dementia (STAND trial) – a feasibility study. (Chris Albertyn, Kings College London).
- Presentation: How can we best support the care home community through research: Developing a research network for care homes in Wales. (Stephanie Green, Swansea University).
- Moderated discussion of the following questions:
- What do you want from the Care Homes Research SIG?
- Care home research post-Covid-19: What infrastructure and mechanisms are needed to support care homes research during and after the Covid-19 pandemic?’
** If you are not already a member of the Care Homes Research SIG, and would like to be, then please email firstname.lastname@example.org and I will add you to our mailing list**
Volunteer-led Behavioural Activation for treatment of depression in care homes: Associate Professor Christina Bryant, University of Melbourne.
Objectives: Symptoms of depression are highly prevalent and undertreated in residential aged care facilities/care homes. Behavioural activation is a simple, cost-effective psychosocial intervention that might be appropriate to help reduce depression and improve well-being in this setting. The purpose of this study was to investigate the feasibility and efficacy of an eight-week, volunteer-led behavioural activation intervention designed for depressed RACF residents.
Methods: This feasibility study employed a single-arm design, where outcomes were measured at baseline, post-intervention and 3-month follow-up. RACF residents with depressive symptoms and healthy volunteers were invited to participate. Intervention feasibility was assessed on six a priori determined domains. Depression, anxiety and flourishing were included as outcomes using intention-to-treat analysis.
Results: Seventeen residents with depressive symptoms and 13 volunteers were successfully recruited within the expected six-month timeframe. Both residents and volunteers were satisfied with the intervention (7/8), and there was a high (87%) completion rate. The intervention was associated with a large and statistically significant reduction in resident depressive symptoms, d = – 1.14, with the effect increasing to d = 2.82 when comparing baseline to 3-month follow-up.
Conclusions: This 8-week volunteer led behavioural activation intervention was found to be feasible and acceptable to depressed RACF residents. The intervention was effective in ameliorating depression. A larger randomized controlled trial is warranted.
Sativex® for the Treatment of AgitatioN in Dementia (STAND trial) – a feasibility study: Chris Albertyn, Kings College London.
People living with dementia often experience a myriad of behavioural and psychological symptoms of dementia (BPSD). Anxiety and agitation are highly common within BPSD, negatively impacting their health, accelerating dementia progression, and are distressing both to patients and those caring for them. They also cost society a great deal, with increased hospitalisations, cost of care and earlier institutionalisation. Unfortunately, current treatments for these symptoms do not work very well and have a lot of unwanted side-effects. Recently, cannabis-based medicinal products have emerged as potentially safer alternative candidates for agitation as they display effective anti-nausea, anti-anxiety and analgesic properties. However, there is little systematic and robust evidence support these encouraging early reports. Moreover, we specifically hope to investigate Sativex®, administered as an oral-spray, containing 50% delta-9-tetrahydrocannabinol (THC) and 50% cannabidiol (CBD) for agitation in dementia. This combination is particularly pertinent as THC reduces pain, anxiety and sleep disturbances; and CBD reduces delusions and hallucinations.
We will be conducting a mixed-methods, randomised, double-blind, parallel group, placebo-controlled phase II clinical trial, recruiting 60 people with dementia displaying behavioural symptoms from nursing homes, with the aim to assess the safety, feasibility & acceptability within a nursing home context, and estimate the effectiveness of Sativex® for agitation in dementia.
How can we best support the care home community through research: Developing a research network for care homes in Wales: Stephanie Green, Swansea University.
This presentation will provide an overview of the ENRICH network in the Welsh context, with a particular focus on empowering the care home community to be part of research during a pandemic. Some of the opportunities, challenges and impact of the current pandemic for supporting research in care homes will be highlighted, followed by an invitation to discuss these issues further.
The pan-Wales Enabling Research in Care Homes (ENRICH Cymru) network is affiliated with the regional ENRICH networks in England and Scotland, in development since 2012. ENRICH Cymru was developed in 2018 in response to a growing momentum to better support and involve the care home community in Wales to be part of the research agenda, and ultimately to benefit from more research opportunities.
The network in Wales promotes the exchange of research ideas and knowledge, and fosters the co-creation of research relevant to the current issues in the Care Home sector. Above all, ENRICH Cymru considers Care home managers and staff as the experts in research. This presentation comes at a critical point in time for the care home community and would welcome discussions around how care homes can be better supported to be part of research.”
This symposium will take place through Zoom. Please register to attend through our Eventbrite link
The Zoom link and password will then be sent to registrants the day before the symposium.
NIHR SSCR Webinar includes talks focusing on loneliness.
The first presentation will be delivered by Mark Wilberforce (University of York) – the presentation will focus on Isolation and loneliness in people with sight loss in care homes (the INSIgHT project)
The second presentation will be delivered by Paul Willis (University of Bristol) – the presentation will focus on Older men at the margins: a study of older mens’ experiences of seeking social engagement and combating loneliness in later life
NIHR SSCR’s Webinars are free to attend with pre-registration. The webinar will take place on the 9th June 2020 1.00pm – 2.00pm. Click here to register on Eventbright
A recently published paper in Dementia: The International Journal of Social Research and Practice, presents findings from a study by Keating, Cole and Grant. The authors carried out an evaluation on the effectiveness of group reminiscence arts sessions for people living with dementia in both residential and nursing homes.
“The intervention was conducted in six care homes in London over a period of 24 weeks and compared with six care homes not receiving the intervention (control). Dementia Care Mapping was used as the primary data collection instrument to measure positive behaviours and rate quality of life before, during and after group reminiscence arts sessions. The evaluation team observed the sessions at three-weekly intervals.
Statistical modelling found that positive behaviours and quality of life of care home residents participating in group reminiscence arts sessions increased over the 24-week period. Well-being increased sharply during each session and plateaued at 50 minutes with a sustained positive effect after the sessions. On a longer timescale, well-being and quality of life increased slowly and steadily from one session to the next.
The study suggests that “The findings were statistically significant (p<0.001)” and concluded “that group reminiscence arts sessions can have a positive and sustained impact on the quality of life of people with dementia.”
Whilst the evidence shows a positive affect can be drawn from group reminiscence arts sessions for people living with dementia “evidence on the sustainability of the effect over time remains unknown.”
Full paper can be found on the journal website
Keating, F., Cole, L. and Grant, R. (2020) An evaluation of group reminiscence arts sessions for people with dementia living in care homes, Dementia, 19(3) pp. 805–821.
A recent paper published in the BMC Health Services Research journal evaluated the implementation of a new Care Home Innovation Programme (CHIP) to reduce potentially avoidable hospital admissions.
The research team invited 32 care homes with 1,314 beds in South Sefton, Merseyside to sign up to CHIP which was launched in April 2015 which continued until June 2018. They found that “in comparison to the 12 months prior to launch, over a four-year period, implementation of the CHIP resulted in a 15% reduction of emergency calls, and in a 19% reduction of conveyances to hospital”.
The full paper is available at:
Clarissa Giebel, Debbie Harvey, Asangaedem Akpan and Peter Chamberlain (2020) Reducing hospital admissions in older care home residents: a 4-year evaluation of the care home innovation Programme (CHIP), BMC Health Services Research, 20, 94.
A recently published paper in the BMC Health Services Research journal sets out findings from a study which explored the feasibility of conducting a trial of a full clinical medication review for care home residents with behaviour that challenges, combined with staff training. The paper by Maidment and colleagues focused on the feasibility of measuring clinical outcomes and intervention costs.
“People living with moderate to severe dementia, receiving psychotropics for behaviour that challenges, in care homes were recruited for a medication review by a specialist pharmacist. Care home and primary care staff received training on the management of challenging behaviour.
Data were collected at 8 weeks, and 3 and 6 months. Measures were Neuropsychiatric Inventory-Nursing Home version (NPI-NH), cognition (sMMSE), quality of life (EQ-5D-5 L/DEMQoL) and costs (Client Services Receipt Inventory).
Response rates, for clinical, quality of life and health economic measures, including the levels of resource-use associated with the medication review and other non-intervention costs were calculated.
Twenty-nine of 34 participants recruited received a medication review. It was feasible to measure the effects of the complex intervention on the management of behaviour that challenges with the NPI-NH. There was valid NPI-NH data at each time point (response rate = 100%). The sMMSE response rate was 18.2%. Levels of resource-use associated with the medication review were estimated for all 29 participants who received a medication review. Good response levels were achieved for other non-intervention costs (100% completion rate), and the EQ-5D-5 L and DEMQoL (≥88% at each of the time points where data was collected).”
The study found that it is “feasible to measure the clinical and cost effectiveness of a complex intervention for behaviour that challenges using the NPI-NH and quality of life measures”.
Full paper (open access):
Ian D. Maidment, Garry Barton, Niyah Campbell, Rachel Shaw, Nichola Seare, Chris Fox, Steve Iliffe, Emma Randle, Andrea Hilton, Graeme Brown, Nigel Barnes, Jane Wilcock, Sarah Gillespie & Sarah Damery (2020) MEDREV (pharmacy-health psychology intervention in people living with dementia with behaviour that challenges): the feasibility of measuring clinical outcomes and costs of the intervention, BMC Health Services Research, 20, 157.
The research found the optimal time – if any – to move to a care home depends on many different factors other than symptom severity. These include the wellbeing of the person living with dementia, family members’ ability to support them and the type and availability of care home places.
But dialogue with social care professionals and care home managers, as well as intermediate steps such as joining care home waiting lists and using respite offered by care homes, can help ease what for some is an agonising decision. Often the decision seemed to be harder if it had to be taken at a time of crisis, the research suggested.
“We would emphasise the value of conversation – really talking to people with the right experience – in managing potential distress and exploring options as early as possible,” said Dr Kritika Samsi, who led the team at NIHR Health & Social Care Workforce Research Unit (HSCWRU). She continued: “It was clear from this study that determining the ‘right time’ for any move was highly individual, contextual and not dependent on the ‘stage’ of someone’s dementia.”
Her colleague Dr Laura Cole who interviewed many of the people affected by dementia in this study added: “Moving to a care home was a highly emotional time for many families. And some continued to ruminate on their decision long after it had happened. It is important to bear in mind that there is no perfect time – but the aim is that everyone’s point of view is taken into account.”
‘Feeling ready’ for a move to a care home
The research team found that existing evidence says that in most cases decisions about moving to a care home are largely driven by whether people living with dementia and their family carers ‘feel ready’ for a move. This consideration is also strongly influenced by negative perceptions of care homes being a ‘last resort’ option especially when people are unfamiliar with care homes and what they can offer.
Interviews with family carers underscored the “frustration, grief, guilt and sorrow” some people experience when trying to decide whether their relative should make a move to a care home.
Many family carers – especially self-funders – felt poorly supported by local authority adult social care services and were frustrated by a lack of easily available advice.
When deciding whether to take a vacancy at a care home, families notably valued facilities’ ‘feel’, whether staff seemed caring, and the ease of visiting. Some found that having used the short-break services of a care home for respite or having been in contact by joining a waiting list helped establish a relationship with the care home’s staff.
Only five people living with dementia – all of whom had recently moved to a care home – were interviewed for the study as many care home residents were not able to talk about the decisions. But within that small sample, there were strong indications that involving the person living with dementia in the decision helped them adapt to their new surroundings.
Maximising time at home
Practitioners tended to prioritise the wishes of people living with dementia when it came to the time of moving to a care home, although the need to make best-interests decisions overrode these on occasion.
While noting the importance of managing risks and family carers’ ability to cope, many social workers believed that people living with dementia should continue to live at home for as long as possible. A follow-up survey of dementia care practitioners reinforced this notion, and many maximised home care support before recommending a care home move.
However, some care home managers who were interviewed by the researchers, while acknowledging the value of time at home, noted that moving to a care home early could help staff get to know people before their symptoms became too severe. Moving earlier could also enable people living with dementia to be more involved in the decision.
Like social workers, care home managers said that joining waiting lists or making use of short-stay or respite care could help people prepare for a later long-term move.
Moving to a care home ‘not a failure’
Commenting on the findings, Professor Jill Manthorpe, another member of the research team, said: “We would like to shift the idea that moving to a care home is a failure or a last resort – it’s another step in people’s care journey that may be necessary, the optimal time will depend on the person living with dementia, their carers and local facilities.
“Where possible, conversations in this area may be helpful if held in advance, although we acknowledge that for some people it’s too distressing – you cannot enforce care planning if people feel unable to do it.
“Our study also suggests people may settle better in a care home and enjoy life there more if they have been involved in the decision rather than experiencing it as a crisis – our sample was too small to draw firm conclusions but future work is needed to investigate this further.”
Full summary findings
NIHR SSCR (2019) Investigating ‘Optimal Time’: Perspectives on the Timing of People Living with Dementia Moving into Care Homes, Research Findings 88, NIHR School for Social Care Research, London.