Dementia data for people living in care homes: cross-sectoral national data linkage study of care home, healthcare and administrative data sources

Introduction Moving into a care home is a significant, life-changing experience which occurs to address care needs which cannot be supported elsewhere. UK health policy recommends against moving into a care home from the acute hospital. However, this occurs in practice. Better understanding pathways into care homes could improve support for individuals and families, service planning and policymaking. Our aim was to characterise individuals who move-in to a care home from hospital and those moving-in from the community, identifying factors associated with moving-in from hospital. Method A retrospective observational cohort study was conducted involving adults moving into care homes in Scotland between 1/3/13-31/3/16 using the Scottish Care Home Census (SCHC), a national individual-level social care dataset. SCHC data were linked to routine data sources including hospital admissions, community prescribing and mortality. The data were split into those moving-in from hospital and those moving-in from the community. Descriptive statistics characterising the two groups were generated and multivariate regression undertaken to identify factors associated with moving-in from hospital. Results A total of 23,892 individuals were included in the analysis, of whom 13,564 (56.8%) moved-in from hospital. A third came directly from an acute hospital, with 57.7% from rehabilitation or community hospitals and 7.1% from inpatient psychiatry. Being male, receiving nursing care, high frailty risk, increasing numbers of hospital admissions and diagnoses of any fracture or stroke in the six months before moving-into the care home were all significant predictors of moving-in from hospital. Conclusions The population moving-in to care homes from hospital are clinical distinct from those moving-in from the community. National cross-sectoral data linkage of health and social care data is feasible, but the available data are dominated by health characteristics. There is an urgent need to operationalise other meaningful variables which shape care pathways to enhance understanding and evidence.

Purpose – The purpose of this paper is to outline an approach being taken, to improve opportunities and increase levels of physical activity amongst residents in care homes in Scotland, which has the potential to make a significant difference to the quality of lives. The approach is designed to raise awareness about the importance of physical activity, increase skills, knowledge and capacity amongst the workforce. Design/methodology/approach – The paper describes the reasons for promoting physical activity in care homes. It describes the challenge to this, associated issues and introduces you to a resource pack which offers solutions to care homes through a self-improvement process. It provides a case study which exemplifies how the ideas can be applied on a day-to-day basis. Findings – The paper provides insights into the challenges in the care home sector to promoting physical activity and offers some ways round these. It describes two strategies within the new resource pack to support care home residents to make person centred physical activity choices. Practical implications – This paper suggests that to promote physical activity in a care home the choices and needs of an individual must be the starting point. It requires partnership working and good leadership where staff have the permission to work in a new way. It suggests that risk enablement is key and the benefits of physical activity outweigh the risks even with frail older people. Originality/value – This paper promotes a new resource pack for care homes in Scotland for promoting an active life based on a self-improvement process.

Background/aims: Knowledge and research about research participation in the context of care homes is sparse. This article describes the level of research engagement for care homes in Scotland, and the facilitators and barriers to this. Methods: A short survey was distributed to care homes in Scotland. A total of 130 care homes returned completed surveys. Results: As of 2014, only 7' of care homes had past or present experience of research. Lack of time and workplace pressures were key obstacles to increasing research within care homes. Respondents recognised that residents could benefit from research but there were also concerns about the risks of research involvement. Conclusions: The survey provides much needed evidence that care homes are being overlooked in research, leading to exclusion of staff and residents. More work is needed to help integrate research into care homes without adding to the demands and pressures of the workplace.

There is a need to understand the lives of people who live in care homes and how care should be delivered in this setting. Enabling Research in Care Homes (ENRICH) was funded by National Institute for Health Research in 2012 in England to increase research awareness and participation for people who live and work in care homes. A similar model was developed for Scotland, but without funding this proved difficult. In 2021, the Chief Scientist Office funded an expansion of the existing model for Scottish care homes. This article describes the components of enabling research in care homes in Scotland and the research infrastructure the team are developing to enable more research, including clinical trials, to be carried out in Scottish care homes, and how this will benefit the residents, families and staff.

ObjectivesMortality trends among people living in long-term care settings have been poorly understood. Linking data offers the potential to provide real-world, long-term national follow-up. Our aim was to describe patterns...

Following the global health pandemic of COVID-19, a spotlight has been placed on care homes in the UK and the disproportionate impact the virus has had, and continues to have (Hanratty <em>et al</em>., 2020). There is an urgent need to widen our knowledge base about care homes and the inclusion of people living and working in care homes in research studies. This paper presents qualitative findings from a study exploring the facilitators and barriers to research participation in care homes. Semi-structured interviews were conducted with residents (n = 12), staff (n = 15), relatives (n = 6) and researchers (n = 8) across three care homes in Scotland between 2014 and 2015. The findings suggest that the key barriers and facilitators to research participation are best captured by three themes: relationships, knowledge about research, and structural challenges. The way these themes are navigated within the care home is expected to shape the willingness and ability of care homes to engage in research. Positive relationships, accessible information about research, and adequate time and space are all likely to increase research presence within care homes. Conversely, poor relationships, alienating research communication, and limited time and space are all likely to result in care homes being unable or unwilling to participate. Overall, this paper demonstrates that care homes face several barriers to research participation, and efforts to improve relationships, raise awareness of the research process and provide flexible solutions for structural challenges are needed. Future research needs to be mindful of these challenges in order to facilitate research relating to COVID-19 and more generally in gerontology and dementia.

IntroductionCOVID-19 in care homes has heightened the risk of staff burnout, undermining already problematic staff retention and low morale. There has been an associated proliferation of resources and online initiatives to support frontline workers, however, few of these are directly targeted at the care home workforce. Care home workers are highly skilled in caring for people with complex needs, but have very variable levels of formal training, and just over half of care homes in Scotland include registered nurses. This project will rapidly collate existing resources and identify, direct from care home workers, their best practice, initiatives, and resources used to support resilience and retention during this pandemic and moving forward.Methods1) Rapid review of care home specific evidence and resources (including published research and social media); 2) Online survey of Enabling Research in Care Homes (ENRICH) members across Scotland (n = 55); 3) Case studies within six care homes to identify what is working well and what is not in terms of promoting resilience and emotional support.ResultsThe rapid review has identified a wide range of resources directed at supporting staff working in care homes; the survey and case studies will provide data on the key learning and resources that have supported staff, and outline the challenges identified. There are many resources available but staff do not access these. The role of the care home manager is key.Key conclusionsThis comprehensive review of resources and initiatives will make a valuable contribution to policy and practice designed to reduce burnout and foster retention not just in care homes but more widely across health and social care.

IntroductionThe Project ECHO model improves knowledge and understanding of multiple topics across care settings, taking a collaborative ‘all teacher - all learner’ approach. The Scottish Government healthcare framework – ‘My...

BackgroundLow physical activity in care home residents brings about negative mental health consequences, such as higher levels of depression and loneliness. With advancements in communication technology, particularly during the COVID-19 pandemic, the feasibility and effectiveness of a randomised controlled trial (RCT) of a digital Physical Activity (PA) resource in care homes deserve more research attention. A realist evaluation was used to uncover influencing factors of a feasibility study implementation to inform how a digital music and movement programme would work and under what circumstances this would be most effective.MethodsParticipants were 49 older adults (aged 65 years +) recruited across ten care homes in Scotland. Surveys were administered at baseline and post-intervention comprising psychometric questionnaires on multidimensional health markers validated in older adults with possible cognitive impairment. The intervention comprised 12 weeks of four prescribed digitally delivered movement (n = 3) and music-only (n = 1) sessions per week. An activity coordinator delivered these online resources in the care home. Post-intervention focus groups with staff and interviews with a sub-sample of participants were conducted to gain qualitative data on the acceptability of the intervention.ResultsThirty three care home residents started the intervention, but only 18 residents (84% female) completed both pre- and post-intervention assessments. Activity coordinators (AC) offered 57% of the prescribed sessions, with an average residents’ adherence of 60%. Delivery of the intervention did not go as planned due to Covid restrictions in care homes and delivery challenges, including (1) motivation and engagement, (2) changes in cognitive impairment and disabilities of the participants, (3) death or hospitalisation of the participants and (4) limited staffing and technology resources to deliver the programme as intended.Despite this, group participation and encouragement of residents supported the delivery and acceptance of the intervention, with ACs and residents reporting improved mood, physical health, job satisfaction and social support. Improvements with large effect sizes were found for anxiety, depression, loneliness, perceived stress and sleep satisfaction, but no changes in fear of falling, domains of general health or appetite.ConclusionThis realist evaluation suggested that this digitally delivered movement and music intervention is feasible. From the findings, the initial programme theory was refined for future implementation of an RCT in other care homes but future research exploring how to tailor the intervention to those with cognitive impairment and/or lacking capacity to consent is needed.Trial registrationRetrospectively registered at ClinicalTrials.gov NCT05559203.

Knowledge about research participation in care homes is sparse. To explore research participation in Scottish care homes, including the potential barriers and facilitators, a short survey was distributed to all care homes in Scotland in 2014. The survey was repeated in 2022 as care homes emerged from the effects of the coronavirus disease 2019 (COVID-19) pandemic. This article provides a comparison of the results of the 2022 survey (45 responses) with those of the 2014 survey (130 responses); the surveys were completed by care home staff. The results indicate that there has been a slight increase in the proportion of care homes involved in research in the intervening period but overall, research participation has remained low in this sector. In the 2022 survey, the main factors identified as influencing a resident's decision to participate in research were 'to help others', 'to benefit the resident' and the 'resident's desire to participate'. The main obstacles to research participation by staff and/or residents were workload pressure and lack of time, which had increased significantly since the 2014 survey. The results reinforce the importance of ensuring care home staff feel equipped to participate in research.

To describe how care home staff experience bereavement and their perspectives on providing bereavement care within care home settings. Qualitative descriptive study using focus groups analysed with the Framework Method. Seven residential and nursing care homes for older adults in Scotland. 37 care home staff were recruited through the Enabling Research In Care Homes (ENRICH) Scotland research network. Participants included registered nurses, care workers, senior care workers, managers and ancillary workers with experience of resident death and bereavement practice. Bereavement was woven through everyday care home life, understood as a tapestry of experiences, relationships and practices that involved staff, residents and their relatives. Three themes that connected to the tapestry metaphor were identified: Warps: structural threads grounding bereavement within the culture of homely living, where close bonds normalise death and dying, and pragmatic acceptance. Wefts: strengthening practices nurturing resilience, including relational trust, mutual support, rituals and follow-up with relatives. Moths: disruptions undermining bereavement practice include family secrecy, hospital deaths with withheld information, difficulty supporting residents with advanced dementia and dissatisfaction with online training. Bereavement in care homes is collective, relational and embedded in routine practice. Organisational recognition of grief improved interservice communication. Tailored reflective support for staff is needed to sustain compassionate care. Further research should explore how residents experience repeated exposure to death and bereavement within communal living environments.

This paper suggests that there is an imbalance between the ideal and the actual palliative care provision for some older people living and dying in care homes in Scotland. Successive studies demonstrate that care home residents are increasingly frail and disabled. Many experience challenging physical and psychosocial symptoms which could benefit from a palliative approach to alleviate suffering and promote comfort. However, palliative needs for people with non-malignant conditions, such as dementia, can be complex, and not easily identified or managed. A range of challenging factors currently impact palliative care provision for care home residents in Scotland including: the insufficiency of robust NHS healthcare support, the skill mix of the care home workforce, and the promotion of palliative tools as the primary means of improving the quality of palliative care in non-specialist settings. Issues highlighted in this paper give cause for concern on a number of levels, particularly as the demand for palliative care in care homes is likely to increase in the near future. Therefore, sustained collaborative effort from leaders in the health, social and care home sectors is recommended if practical solutions are to be found for this vulnerable population.

Introduction Residents of care homes for older people experience multi-factorial problems when being given oral medication. A systematic integrated mixed-methods review of the literature revealed that practices of modifying tablets, crushing and mixing with food, in attempts to administer medication, remain widespread internationally. There is a high prevalence of swallowing problems. Care home routines are time pressured, and there are incidences of disempowering practices and language associated with processes of medication administration. The literature presented very little from the residents’ experience, largely representing them as passive recipients in the activity. Objective The aim of this study was to explore the experience of residents of care homes for older people who need help from care staff to take their medication. Its purpose was to answer a single research question, ‘What is the experience of residents of care homes when oral medication is administered?’ Methods Observation of an episode of medication administration and semi-structured interviewing were conducted with eight residents between the ages of 84 and 95 from care homes in Scotland. Data was analysed in accordance with a Gadamerian philosophy of hermeneutics, with a commitment to understanding and representing the participants’ experience. Results Four themes emerged from the data, ‘Being in control/relinquishing control’, ‘Being comfortable in routine’, ‘Trusting’, and ‘Swallowing’. Interpretive exploration of these themes revealed the importance of facilitating individual routines when taking medication, and that a trusting relationship with staff and with the medication can be an indicator of vulnerability. The risks to autonomy in relation to taking medication, and an imbalance of power for care home residents who are given medication to take emerged as an overarching concept. Conclusion Recommendations focus on the potential for empowering practices in relation to taking medication, both for those who provide care, and for those who prescribe medication.

This paper suggests that there is an imbalance between the ideal and the actual palliative care provision for some older people living and dying in care homes in Scotland. Successive studies demonstrate that care home residents are increasingly frail and disabled. Many experience challenging physical and psychosocial symptoms which could benefit from a palliative approach to alleviate suffering and promote comfort. However, palliative needs for people with non-malignant conditions, such as dementia, can be complex, and not easily identified or managed. A range of challenging factors currently impact palliative care provision for care home residents in Scotland including: the insufficiency of robust NHS healthcare support, the skill mix of the care home workforce, and the promotion of palliative tools as the primary means of improving the quality of palliative care in non-specialist settings. Issues highlighted in this paper give cause for concern on a number of levels, particularly as the demand for palliative care in care homes is likely to increase in the near future. Therefore, sustained collaborative effort from leaders in the health, social and care home sectors is recommended if practical solutions are to be found for this vulnerable population.

Malnutrition is a challenge among older adults and can result in serious health consequences. However, the dietary intake monitoring needed to identify malnutrition for early intervention is affected by issues such as difficulty remembering or needing a dietitian to interpret the results. This study aims to co-design a tool using automated food classification to monitor dietary intake and food preferences, as well as food-related symptoms and mood and hunger ratings, for use in care homes. Participants were 2 separate advisory groups and 2 separate sets of prototype testers. The testers for the first prototype were 10 community-dwelling older adults based in the Stirlingshire area in Scotland who noted their feedback on the tool over 2 weeks in a food diary. The second set of testers consisted of 14 individuals (staff: n=8, 57%; and residents: n=6, 43%) based in 4 care homes in Scotland who provided feedback via interview after testing the tool for a minimum of 3 days. In addition, 130 care home staff across the United Kingdom completed the web-based survey on the tool's needs and potential routes to pay for it; 2 care home managers took part in follow-up interviews. Data were collected through food diaries, a web-based survey, audio recordings and transcriptions of focus groups and interviews, and research notes. Systematic text condensation was used to describe themes across the different types of data. Key features identified included ratings of hunger, mood, and gastrointestinal symptoms that could be associated with eating specific foods, as well as a traffic light system to indicate risk. Issues included staff time, Wi-Fi connectivity, and the accurate recognition of pureed food and fortified meals. Different models for potential use and commercialization were identified, including peer support among residents to assist those considered less able, staff-only use of the tool, care home-personalized database menus for easy meal photo selection, and targeted monitoring of residents considered to be at the highest risk using the traffic light system. The tool was deemed useful for monitoring dietary habits and associated symptoms, but necessary design improvements were identified. These should be incorporated before formal evaluation of the tool as an intervention in this setting. Co-design was vital to help make the tool fit for the intended setting and users.