What really is nontokenistic fully inclusive patient and public involvement/engagement in research?

Patient and public involvement and engagement (PPIE) is critically important in healthcare research. A useful starting point for researchers to understand the scope of PPIE is to review the definition from the National Institute for Health and Care Research (NIHR) as, 'research being carried out "with" or "by" members of the public rather than "to", "about" or "for" them'. PPIE does not refer to participation in research, but to actively shaping its direction. The 'Effectiveness of a decision support tool to optimise community-based tailored management of sleep for people living with dementia or mild cognitive impairment (TIMES)' study is funded through the NIHR programme grant for applied research. TIMES has thoroughly embraced PPIE by ensuring the person's voice is heard, understood, and valued. This editorial showcases how the TIMES project maximised inclusivity, and we share our experiences and top tips for other researchers. We base our reflections on the six key UK standards for public involvement; Inclusive Opportunities, Working Together, Support and Learning, Communications, Impact and Governance. We present our work, which had been co-led by our PPIE leads, academics and partners including, together in dementia everyday, Innovations in Dementia, The UK Network of Dementia Voices (Dementia Engagement & Empowerment Project) and Liverpool Chinese Wellbeing. We have a Lived Experience Advisory Forum on Sleep, which includes people with dementia, family carers, representatives of the South Asian Community and the Chinese community.

What are the factors associated with people with advanced dementia refusing assistance with personal care?

BACKGROUND: People with dementia sometimes refuse assistance with personal care activities such as washing or dressing. We aimed to investigate the factors associated with refusals of care in advanced dementia. METHODS: A cross-sectional study using informant-based measures. Participants were people with advanced dementia and their caregivers (family carers or care-home staff) (n = 260, 130 dyads) in the UK. Mixed effects linear models were used to examine the effects of neuropsychiatric behaviours, ability with activities of daily living, professional input, co-morbidities, psychotropic medications, environment modifications, and caregiver factors including type and training status on refusals of care. The Refusal of Care Informant Scale was used, range 1-13; higher scores indicate more refusal behaviours. RESULTS: Higher independence in activities of daily living was associated with less refusal behaviours (coefficient = -0.11, p < 0.001 [95% confidence interval -0.15, -0.07]). Higher agitation was associated with more refusal behaviours (0.11, p < 0.001 [0.06, 0.15]). No other statistically significant differences were found. There was no demonstrable evidence of differences in number of refusals of care between family and care-home caregivers or between dementia-trained or -untrained caregivers. CONCLUSIONS: Results suggest refusals of care have similar prevalence regardless of caregiver type (family or care home) or dementia training status, indicating that current dementia training has no impact on refusals of care or may not be implemented as intended. Improving independence in activities of daily living and reducing agitations may help prevent refusals of care. To establish causality, future research should consider embedding these factors into interventions targeting refusal of care.

Outcome measures from international older adult care home intervention research: a scoping review.

BACKGROUND: Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. OBJECTIVE: To identify care home intervention studies and describe the resident outcome measures used. DESIGN: Scoping review. METHODS: We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. RESULTS: From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using 732 outcome measures. Outcomes were evaluated between 1 and 112 times, with 75.1% of outcomes evaluated only once. Outcome measures were used 1-120 times, with 68.4% of measures used only once. Only 14 measures were used ≥20 times. Functional status, mood & behaviour and medications were the commonest outcome domains assessed. More than half of outcomes were assessed using scales, with a fifth using existing records or administrative data. CONCLUSIONS: There is significant heterogeneity in the choice and assessment of outcomes for intervention research in care homes. There is an urgent need to develop a consensus on useful and sensitive tools for care homes, working with residents, families and friends and staff.

Contextual factors influencing complex intervention research processes in care homes: a systematic review and framework synthesis.

BACKGROUND: Care homes are complex settings to undertake intervention research. Barriers to research implementation processes can threaten studies' validity, reducing the value to residents, staff, researchers and funders. We aimed to (i) identify and categorise contextual factors that may mediate outcomes of complex intervention studies in care homes and (ii) provide recommendations to minimise the risk of expensive research implementation failures. METHODS: We conducted a systematic review using a framework synthesis approach viewed through a complex adaptive systems lens. We searched: MEDLINE, Embase, CINAHL, ASSIA databases and grey literature. We sought process evaluations of care home complex interventions published in English. Narrative data were indexed under 28 context domains. We performed an inductive thematic analysis across the context domains. RESULTS: We included 33 process evaluations conducted in high-income countries, published between 2005 and 2019. Framework synthesis identified barriers to implementation that were more common at the task and organisational level. Inductive thematic analysis identified (i) avoiding procedural drift and (ii) participatory action and learning as key priorities for research teams. Research team recommendations include advice for protocol design and care home engagement. Care home team recommendations focus on internal resources and team dynamics. Collaborative recommendations apply to care homes' individual context and the importance of maintaining positive working relationships. DISCUSSION: Researchers planning and undertaking research with care homes need a sensitive appreciation of the complex care home context. Study implementation is most effective where an intervention is co-produced, with agreed purpose and adequate resources to incorporate within existing routines and care practices.

The uptake and use of a minimum data set (MDS) for older people living and dying in care homes: a realist review.

BACKGROUND: Care homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents. METHODS: The realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature. RESULTS: Fifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care CONCLUSIONS: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology. REGISTRATION: PROSPERO registration number CRD42020171323.

Inclusion under the Mental Capacity Act (2005): A review of research policy guidance and governance structures in England and Wales.

OBJECTIVE: To investigate how people with communication and understanding difficulties, associated with conditions such as dementia, autism and intellectual disability, are represented in research guidance supplementary to the Mental Capacity Act (MCA: 2005) in England and Wales. METHODS: A documentary survey was conducted. The sample comprised the MCA Code of Practice (CoP: 2007) and 14 multi-authored advisory documents that were publicly available on the Health Research Authority website. Textual review of key words was conducted followed by summative content analysis. RESULTS: Representation of people with communication and understanding difficulties was confined to procedural information and position statements that focused mainly on risk management and protection. Whilst a need to engage potential participants was recognized, guidance provided was imprecise. CONCLUSIONS: Tensions exist between the protection versus empowerment of people with communication and understanding difficulties in research. The development of structured, evidence-based guidance is indicated. PATIENT OR PUBLIC CONTRIBUTION: People with communication and understanding difficulties and carers participated in a working group to explore, discuss and interpret the findings.

Dementia Friendly Communities in England: A scoping study.

OBJECTIVES: To describe the characteristics of Dementia Friendly Communities (DFCs) across England in order to inform a national evaluation of their impact on the lives of those affected by dementia. METHODS: DFCs in England were identified through online searches and Alzheimer's Society records. A subsample (n = 100) were purposively selected for in-depth study based on online searches and, where necessary, follow-up telephone calls. Data collection and analysis were guided by a pilot evaluation tool for DFCs that addressed how DFCs are organised and resourced and how their impact is assessed. The evidence was predominantly qualitative, in addition to some descriptive quantitative information. RESULTS: Of 284 DFCs identified, 251 were defined by geographical location, while 33 were communities of interest. Among 100 sampled DFCs, 89 had been set up or started activities following policy endorsement of DFCs in 2012. In the resourcing of DFCs, statutory agencies and charities played an important role. Among DFC activities, awareness raising was cited most commonly. There was some evidence of involvement of people living with dementia in organisational and operational aspects of DFCs. Approaches to evaluation varied, with little evidence of findings having effected change. CONCLUSIONS: DFCs are characterised by variation in type, resourcing, and activities. England has policy endorsement and a recognition system for DFCs. These can be important catalysts for initiation and growth. A systematic approach to evaluation is lacking. This would enable DFCs to be consistent in how they demonstrate progress and how they enable people living with dementia to live well.

The place for dementia-friendly communities in England and its relationship with epidemiological need.

OBJECTIVES: The dementia-friendly community (DFC) initiative was set up to enable people living with dementia to remain active, engaged, and valued members of society. Dementia prevalence varies nationally and is strongly associated with the age and sex distribution of the population and level of social deprivation. As part of a wider project to evaluate DFCs, we examined whether there is a relationship between provision of DFCs and epidemiological need. METHODS: Dementia-friendly communities were identified through the formal recognition process of DFC status by the Alzheimer's Society and mapped against areas defined by English Clinical Commissioning Groups. We tested whether provision of a DFC was associated with: (1) dementia prevalence, (2) number of known cases, and (3) known plus estimated number of unknown cases. RESULTS: Of the 209 English Clinical Commissioning Group areas, 115 had at least one DFC. The presence of a DFC was significantly associated with number of known dementia cases (mean difference = 577; 95% CI, 249 to 905; P = 0.001) and unknown dementia cases (mean difference = 881; 95% CI, 349 to 1413; P = 0.001) but not prevalence (mean difference = 0.03; 95% CI, -0.09 to 0.16; P = 0.61). This remains true when controlling for potential confounding variables. CONCLUSIONS: Our findings suggest that DFC provision is consistent with epidemiological-based need. Dementia-friendly communities are located in areas where they can have the greatest impact. A retrospective understanding of how DFCs have developed in England can inform how equivalent international initiatives might be designed and implemented.

The use of non-pharmacological interventions for dementia behaviours in care homes: findings from four in-depth, ethnographic case studies.

BACKGROUND: antipsychotic medications have been used to manage behavioural and psychological symptoms of dementia (BPSD). Due to the potential risks associated with these medications for people with dementia, non-pharmacological interventions (NPIs) have been recommended as safer alternatives. However, it is unknown if, or how, these interventions are used in care homes to help people experiencing BPSD. AIM: to explore the use of NPIs in care homes to manage BPSD. METHODS: In-depth, ethnographic case studies were conducted in four care homes; in total, they included interviews with 40 care-home staff and 384 hours of participant observations. FINDINGS: NPIs, some of which are the focus of efficacy research, were used in care homes but predominantly as activities to improve the quality of life of all residents and not identified by staff as meeting individual needs in order to prevent or manage specific behaviours. Socially relevant activities such as offering a cup of tea were used to address behaviours in the moment. Residents with high levels of need experienced barriers to inclusion in the activities. CONCLUSIONS: there is a gap between rhetoric and practice with most NPIs in care homes used as social activities rather than as targeted interventions. If NPIs are to become viable alternatives to antipsychotic medications in care homes, further work is needed to embed them into usual care practices and routines. Training for care-home staff could also enable residents with high needs to gain better access to suitable activities.

Older care-home residents as collaborators or advisors in research: a systematic review.

BACKGROUND: patient and public involvement (PPI) in research can enhance its relevance. Older care-home residents are often not involved in research processes even when studies are care-home focused. OBJECTIVE: to conduct a systematic review to find out to what extent and how older care-home residents have been involved in research as collaborators or advisors. METHODS: a systematic literature search of 12 databases, covering the period from 1990 to September 2014 was conducted. A lateral search was also carried out. Standardised inclusion criteria were used and checked independently by two researchers. RESULTS: nineteen reports and papers were identified relating to 11 different studies. Care-home residents had been involved in the research process in multiple ways. Two key themes were identified: (i) the differences in residents' involvement in small-scale and large-scale studies and (ii) the barriers to and facilitators of involvement. CONCLUSIONS: small-scale studies involved residents as collaborators in participatory action research, whereas larger studies involved residents as consultants in advisory roles. There are multiple facilitators of and barriers to involving residents as PPI members. The reporting of PPI varies. While it is difficult to evaluate the impact of involving care-home residents on the research outcomes, impact has been demonstrated from more inclusive research processes with care-home residents. The review shows that older care-home residents can be successfully involved in the research process.

Effectiveness of interventions to indirectly support food and drink intake in people with dementia: Eating and Drinking Well IN dementiA (EDWINA) systematic review.

BACKGROUND: Risks and prevalence of malnutrition and dehydration are high in older people but even higher in older people with dementia. In the EDWINA (Eating and Drinking Well IN dementiA) systematic review we aimed to assess effectiveness of interventions aiming to improve, maintain or facilitate food/drink intake indirectly, through food service or dining environment modification, education, exercise or behavioural interventions in people with cognitive impairment or dementia (across all settings, levels of care and support, types and degrees of dementia). METHODS: We comprehensively searched Medline and twelve further databases, plus bibliographies, for intervention studies with ≥3 cognitively impaired adult participants (any type/stage). The review was conducted with service user input in accordance with Cochrane Collaboration's guidelines. We duplicated assessment of inclusion, data extraction, and validity assessment, tabulating data. Meta-analysis (statistical pooling) was not appropriate so data were tabulated and synthesised narratively. RESULTS: We included 56 interventions (reported in 51 studies). Studies were small and there were no clearly effective, or clearly ineffective, interventions. Promising interventions included: eating meals with care-givers, family style meals, soothing mealtime music, constantly accessible snacks and longer mealtimes, education and support for formal and informal care-givers, spaced retrieval and Montessori activities, facilitated breakfast clubs, multisensory exercise and multicomponent interventions. CONCLUSIONS: We found no definitive evidence on effectiveness, or lack of effectiveness, of specific interventions but studies were small and short term. A variety of promising indirect interventions need to be tested in large, high-quality RCTs, and may be approaches that people with dementia and their formal or informal care-givers would wish to try. TRIAL REGISTRATION: The systematic review protocol was registered (CRD42014007611) and is published, with the full MEDLINE search strategy, on Prospero (http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42014007611).

Effectiveness of interventions to directly support food and drink intake in people with dementia: systematic review and meta-analysis.

BACKGROUND: Eating and drinking difficulties are recognised sources of ill health in people with dementia. In the EDWINA (Eating and Drinking Well IN dementiA) systematic review we aimed to assess effectiveness of interventions to directly improve, maintain or facilitate oral food and drink intake, nutrition and hydration status, in people with cognitive impairment or dementia (across all settings, levels of care and support, types and degrees of dementia). Interventions included oral nutrition supplementation, food modification, dysphagia management, eating assistance and supporting the social element of eating and drinking. METHODS: We comprehensively searched 13 databases for relevant intervention studies. The review was conducted with service user input in accordance with Cochrane Collaboration's guidelines. We duplicated assessment of inclusion, data extraction, and validity assessment, tabulating data, carrying out random effects meta-analysis and narrative synthesis. RESULTS: Forty-three controlled interventions were included, disappointingly none were judged at low risk of bias. Oral nutritional supplementation studies suggested small positive short term but unclear long term effects on nutritional status. Food modification or dysphagia management studies were smaller and of low quality, providing little evidence of an improved nutritional status. Eating assistance studies provided inconsistent evidence, but studies with a strong social element around eating/drinking, although small and of low quality provided consistent suggestion of improvements in aspects of quality of life. There were few data to address stakeholders' questions. CONCLUSIONS: We found no definitive evidence on effectiveness, or lack of effectiveness, of specific interventions but studies were small and short term. People with cognitive impairment and their carers have to tackle eating problems despite this lack of evidence, so promising interventions are listed. The need remains for high quality trials tailored for people with cognitive impairment assessing robust outcomes. SYSTEMATIC REVIEW REGISTRATION: The systematic review protocol was registered (CRD42014007611) and is published, with the full MEDLINE search strategy, on Prospero.

Behavioural and psychological symptoms of dementia and their management in care homes within the East of England: a postal survey.

OBJECTIVES: To determine the prevalence of antipsychotic use in care homes. To explore which behaviours care home staff can find difficult to manage and which non-pharmacological interventions are currently used within care homes to help cope with behavioural and psychological symptoms of dementia. METHOD: A postal survey sent to all care homes registered as specialising in the care of older people or/and older people with dementia within four counties in the East of England (n = 747). RESULTS: Questionnaires were returned from 299 care home managers (40%). The vast majority (n = 200, 73%) reported having at least one resident with an antipsychotic prescription in their home. Twelve percent (n = 1027) of care home residents were reported to be prescribed antipsychotic medications. Aggression was most frequently reported, by 37% (n = 109) of care home managers, as a difficult behaviour to manage. Non-pharmacological interventions were reported to be used in 87% (n = 253) of care homes. The interventions most commonly used in care homes to manage difficult behaviours were reminiscence (75%, n = 219) and music therapy (73%, n = 213). CONCLUSION: This survey was a first attempt to estimate the use of antipsychotics in care homes. Despite measures to reduce antipsychotic use for all people with dementia in England, we found that 12% of care home residents were still prescribed antipsychotic medication. Around half of all care home managers reported they had experienced behaviours they found difficult. Antipsychotic medications and a variety of non-pharmacological interventions appear to be used concurrently in many care homes.

Nurturing Attentiveness: A Naturalistic Observation Study of Personal Care Interactions Between People With Advanced Dementia and Their Caregivers.

BACKGROUND AND OBJECTIVES: Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved. RESEARCH DESIGN AND METHODS: This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination. RESULTS: Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities. DISCUSSION AND IMPLICATIONS: Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver.

Activity provider-facilitated patient and public involvement with care home residents.

BACKGROUND: In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved. METHODS: An exploratory design was used to see if it was possible to support "in-house" PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs. RESULTS: APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents' views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes' practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents' thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team's assumptions. CONCLUSIONS: PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research.

In recent years there has been increasing interest in research relating to care homes. It is relatively rare that care home residents are given the chance to influence this research; often, family members or care home staff are asked to speak on their behalf. Research can influence residents' future care, and it is important to find ways of involving residents in research that are meaningful and enjoyable. This research paper discusses a new approach to involving care home residents in research. It begins by recounting how the approach came about, then covers how well it has worked so far, finally reflecting on the benefits and challenges of working in a new way. The researchers originally planned to go into care homes themselves to speak to residents, but with the onset of the Covid-19 pandemic this was no longer possible. Instead, Activity Providers already working in care homes were recruited via the National Activity Providers Association (NAPA) to help. They used activities and discussion prompts developed with the research team to speak to residents about the study. The research team hoped to make getting involved in research meaningful and interesting for residents. The team also wanted to make sure that as many people as possible living with conditions like dementia could get involved too. Comments and suggestions from residents were fed back to the research team to help them make decisions about how the research should be done.

Sleep disturbance in people living with dementia or mild cognitive impairment: a realist review of general practice.

BACKGROUND: Sleep disturbance is a prevalent condition among people living with dementia (PLwD) or mild cognitive impairment (MCI). Its assessment and management within primary care is complex because of the comorbidities, older age, and cognitive impairment typical of this patient group. AIM: To explore how primary care clinicians assess, understand, and manage sleep disturbance for PLwD or MCI; if and why such initiatives work; and how people and their carers experience sleep disturbance and its treatment. DESIGN AND SETTING: A realist review of existing literature conducted in 2022. METHOD: Six bibliographic databases were searched. Context-mechanism-outcome configurations (CMOCs) were developed and refined. RESULTS: In total, 60 records were included from 1869 retrieved hits and 19 CMOCs were developed. Low awareness of and confidence in the treatment of sleep disturbance among primary care clinicians and patients, combined with time and resource constraints, meant that identifying sleep disturbance was difficult and not prioritised. Medication was perceived by clinicians and patients as the primary management tool, resulting in inappropriate or long-term prescription. Rigid nursing routines in care homes were reportedly not conducive to good-quality sleep. CONCLUSION: In primary care, sleep disturbance among PLwD or MCI is not adequately addressed. Over-reliance on medication, underutilisation of non-pharmacological strategies, and inflexible care home routines were reported as a result of low confidence in sleep management and resource constraints. This does not constitute effective and person-centred care. Future work should consider ways to tailor the assessment and management of sleep disturbance to the needs of individuals and their informal carers without overstretching services.

Wicked problems or wicked people? Reconceptualising institutional abuse.

Institutional abuse is a global issue, sometimes ascribed to the behaviour of a few wicked people. It persists despite regulatory measures, interventions from enforcement and protection agencies, organisational policies and procedures. Therefore, the accurate recognition and early detection of abuse and taking corresponding steps to deal with perpetrators are critical elements in protecting vulnerable people who live in institutions. However, research is less clear about why and how abuse (re)occurs. Using the tame and wicked problem analysis of Rittell and Webber (1973) as a lens, we examine the ways institutional abuse is formulated in care settings. Drawing on case study data from eight care homes for older people, we show how solutions seeking to reduce institutional abuse and improve care quality can cause additional problems. The article reconceptualises institutional abuse through the lens of wicked problem analysis to illustrate the multifaceted and recurring, wicked problem characteristics of residential care provision.

Most Common Refusals of Personal Care in Advanced Dementia: Psychometric Properties of the Refusal of Care Informant Scale.

BACKGROUND AND OBJECTIVES: Refusals of care in dementia can be a source of distress for people with dementia and their caregivers. Informant-based measures to examine refusals of care are limited and often measure other behaviors such as agitation. We aimed to assess the validity and reliability of the newly developed, 14-item, Refusal of Care Informant Scale (RoCIS) and then use the scale to verify the most common refusal behaviors. RESEARCH DESIGN AND METHODS: Data from 129 dyads were analyzed. Dyad was defined as a person with advanced dementia either living in a care home or supported in their own home and their caregiver. Data about the person with dementia were gathered using informant-based questionnaires. The psychometric properties of the RoCIS were investigated using Rasch analysis to determine validity and reliability. RESULTS: Following Rasch analysis, the item "upset" was removed from the RoCIS. The reduced 13-item RoCIS is unidimensional and achieved a reliability index of 0.85 (Cronbach's alpha 0.88). Sixty-eight percent of people with dementia had refused care in the last month, with "verbally refused" the most common type of refusal behavior. People in the "very severe/profound" stage of dementia showed more refusal behaviors than those in the "severe" stage. DISCUSSION AND IMPLICATIONS: Results provide initial evidence that the RoCIS is a valid and reliable informant-based scale measuring refusals of care in advanced dementia. Results indicate a need to develop new approaches and techniques to make assistance with personal care more acceptable to people with dementia.

English care home staff morale and preparedness during the COVID pandemic: A longitudinal analysis.

BACKGROUND: Staff actions to prevent infection introduction and transmission in long-term care facilities (LTCFs) were key to reducing morbidity and mortality from COVID-19. Implementing infection control measures (ICMs) requires training, adherence and complex decision making while trying to deliver high quality care. We surveyed LTCF staff in England about their preparedness and morale at 3 timepoints during the COVID-19 epidemic. METHODS: Online structured survey targeted at LTCF workers (any role) administered at 3 timepoints (November 2020-January 2021; August-November 2021; March-May 2022). Narrative summary of answers, narrative and statistical summary (proportionality with Pearson's chi-square or Fisher's Exact Test) of possible differences in answers between waves. RESULTS: Across all 3 survey waves, 387 responses were received. Morale, attitudes towards working environment and perception about colleague collaboration were mostly positive at all survey points. Infection control training was perceived as adequate. Staff felt mostly positive emotions at work. The working environment remained challenging. Masks were the single form of PPE most consistently used; eye protection the least used. Mask-wearing was linked to poorer communication and resident discomfort as well as mild negative health impacts on many staff, such as dehydration and adverse skin reactions. Hand sanitizer caused skin irritation. CONCUSIONS: Staff morale and working practices were generally good even though the working environment provided many new challenges that did not exist pre-pandemic.

Inclusion of adults with conditions that have the potential to affect capacity and or communication in research: triangulation from a mixed-methods study of current practice and values across multiple stakeholders.

OBJECTIVES: We aimed to: (A) describe researcher decision-making when including or excluding adults with conditions that have the potential to affect capacity and/or communication in research and (B) explore the underlying values and reasoning of stakeholders in research which falls under the provisions of the Mental Capacity Act, 2005. DESIGN: The mixed-methods design included semistructured interviews with adults with conditions that have the potential to affect capacity and/or communication, supporters, researchers, research ethics committee members and an online survey with researchers. Triangulation was used to integrate the data and examine the complementarity of the findings. SETTING: England and Wales. PARTICIPANTS: There were 61 participants who took part in semistructured interviews, of which 39 were adults with conditions with potential to affect capacity and/or communication, 6 were in support roles for adults with conditions with potential to affect capacity and/or communication (including family members and professionals in advocacy organisations), 8 were members of research ethics committees flagged under the Mental Capacity Act to review research where there could be issues of mental capacity and 8 were researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. The online survey had 128 participants, researchers with experience of working with adults with conditions that have the potential to affect capacity and/or communication. RESULTS: All stakeholders were supportive of the genuine inclusion of adults with conditions that have the potential to affect capacity and/or communication in research, and exclusion was seen as a form of discrimination. Many researchers were daunted by meeting the threshold within the legislation for including participants who may lack capacity. CONCLUSION: Further training, expertise and resources are required to promote the successful inclusion in research of adults with conditions that have the potential to affect capacity and/or communication.