Exploring Dementia Care Systems Across the African Caribbean Diaspora: A Scoping Review and Consultation Exercise.

BACKGROUND AND OBJECTIVES:Understanding the influences of marginalized cultural and social identities as experienced by the African Caribbean diaspora within the context of dementia care is essential to minimize the gaps in current practice and policy in the health care setting. This study explores the impact of marginalized identities upon the meaning-making process, access to services and experience of care provisions through a scoping review and consultancy exercises with key stakeholders. RESEARCH DESIGN:Fourteen databases were searched using key terms. Primary studies in English, any year, study design, and country of origin were eligible. Titles, abstracts, and full texts were screened for inclusion and data were extracted in stages. Thematic analysis was performed and the findings were discussed in a series of consultation meetings with people with dementia, carers, and health care professionals in Manchester (United Kingdom) and Jamaica. RESULTS:The scoping review retrieved n = 1,989 research articles. Nineteen were included, most were qualitative (n = 14), 3 quantitative, and 2 mixed-method. The findings revealed limited insight into cultural and multiple individual identities in explaining conceptualization and service access. Consultation meetings confirmed these findings and highlighted differences in health care services and systems in the United Kingdom and Jamaica. DISCUSSION AND IMPLICATIONS:This study suggests there is a complex interaction of sociocultural processes that marginalize African Caribbean persons in and across various national settings within the context of dementia care. The study highlights the importance of acknowledging and addressing how prevalent racialized- and class-based divides and related marginalized social locations are reflected in inequities in access to and use of dementia services

Exploring the delivery of remote physiotherapy during the COVID-19 pandemic: UK wide service evaluation

IntroductionDuring the Coronavirus (Covid-19) pandemic, physiotherapists changed rapidly to working remotely. Research demonstrates the benefits of remote physiotherapy, but little is known about its implementation in practice.PurposeExplore the take-up and delivery of remote physiotherapy during the pandemic in the United Kingdom.MethodsSequential mixed methods evaluation with physiotherapists leading remote physiotherapy delivery. Two-stage approach included online survey (2020) and semi-structured interviews with documentary/data analysis (2021).ResultsThere were 1620 physiotherapists who completed the survey. The most used devices were telephone (n = 942,71.0%) and the AttendAnywhere platform (n = 511, 38.5%). Remote consultations were frequently used for initial assessment (n = 1105, 83%), screening/triage (n = 882, 67%), or to review, monitor, and progress treatment (n = 982–1004, 74%–76%). Qualitative survey responses reflected respondents’ response to COVID-19 and delivery of remote physiotherapy. Twelve remote physiotherapy leads were then purposively sampled across clinical areas. Three main themes emerged from interviews: response to Covid-19, delivery of remote physiotherapy, and future of remote physiotherapy.ConclusionRemote physiotherapy was safe, feasible, and acceptable for those who accessed it. There were patients for which it was deemed unsuitable across clinical areas. In practice, it should be combined with in-person consultation based on patients’ needs/preferences. Further research should explore post-pandemic maintenance of remote delivery

What is important to people living with dementia?:the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions

BackgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a ‘long-list’ of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a ‘long-list’ of outcome items for non-pharmacological interventions for people with dementia living at home. MethodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the ‘long-list’ in eight workshops. ResultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence). ConclusionsThis paper presents a transparent blueprint for ‘long-list’ development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes

The assessment and management of pain in patients with dementia in hospital settings: a multi-case exploratory study from a decision making perspective

BACKGROUND:Pain is often poorly managed in people who have a dementia. Little is known about how this patient population is managed in hospital, with research to date focused mainly on care homes. This study aimed to investigate how pain is recognised, assessed and managed in patients with dementia in a range of acute hospital wards, to inform the development of a decision support tool to improve pain management for this group.METHODS:A qualitative, multi-site exploratory case study. Data were collected in four hospitals in England and Scotland. Methods included non-participant observations, audits of patient records, semi-structured interviews with staff and carers, and analysis of hospital ward documents. Thematic analysis was performed through the lens of decision making theory.RESULTS:Staff generally relied on patients' self-report of pain. For patients with dementia, however, communication difficulties experienced because of their condition, the organisational context, and time frames of staff interactions, hindered patients' ability to provide staff with information about their pain experience. This potentially undermined the trials of medications used to provide pain relief to each patient and assessments of their responses to these treatments. Furthermore, given the multidisciplinary environment, a patient's communication about their pain involved several members of staff, each having to make sense of the patient's pain as in an 'overall picture'. Information about patients' pain, elicited in different ways, at different times and by different health care staff, was fragmented in paper-based documentation. Re-assembling the pieces to form a 'patient specific picture of the pain' required collective staff memory, 'mental computation' and time.CONCLUSIONS:There is a need for an efficient method of eliciting and centralizing all pain-related information for patients with dementia, which is distributed in time and between personnel. Such a method should give an overall picture of a patient's pain which is rapidly accessible to all involved in their care. This would provide a much-needed basis for making decisions to support the effective management of the pain of older people with dementia in hospital

Implementation of the StandingTall programme to prevent falls in older people:a process evaluation protocol

INTRODUCTION: One in three people aged 65 years and over fall each year. The health, economic and personal impact of falls will grow substantially in the coming years due to population ageing. Developing and implementing cost-effective strategies to prevent falls and mobility problems among older people is therefore an urgent public health challenge. StandingTall is a low-cost, unsupervised, home-based balance exercise programme delivered through a computer or tablet. StandingTall has a simple user-interface that incorporates physical and behavioural elements designed to promote compliance. A large randomised controlled trial in 503 community-dwelling older people has shown that StandingTall is safe, has high adherence rates and is effective in improving balance and reducing falls. The current project targets a major need for older people and will address the final steps needed to scale this innovative technology for widespread use by older people across Australia and internationally. METHODS AND ANALYSIS: This project will endeavour to recruit 300 participants across three sites in Australia and 100 participants in the UK. The aim of the study is to evaluate the implementation of StandingTall into the community and health service settings in Australia and the UK. The nested process evaluation will use both quantitative and qualitative methods to explore uptake and acceptability of the StandingTall programme and associated resources. The primary outcome is participant adherence to the StandingTall programme over 6 months. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the South East Sydney Local Health District Human Research Ethics Committee (HREC reference 18/288) in Australia and the North West- Greater Manchester South Research Ethics Committee (IRAS ID: 268954) in the UK. Dissemination will be via publications, conferences, newsletter articles, social media, talks to clinicians and consumers and meetings with health departments/managers. TRIAL REGISTRATION NUMBER: ACTRN12619001329156

Longitudinal realist evaluation of the dementia PersonAlised care team (D-PACT) intervention: protocol

BACKGROUND: Different dementia support roles exist but evidence is lacking on which aspects are best, for whom and in what circumstance, and on their associated costs and benefits. Phase 1 of the Dementia PersonAlised Care Team programme (D-PACT), developed a post-diagnostic primary care-based intervention for people with dementia and their carers and assessed the feasibility of a trial. AIM: Phase 2 of the programme aims to 1) refine our programme theory on how, when and for whom the intervention works and 2) evaluate its value and impact. DESIGN & SETTING: A realist longitudinal mixed-methods evaluation will be conducted in urban, rural, and coastal areas across Southwest and Northwest England where low-income groups or ethnic minorities (eg, South Asian) are represented. Design was informed by patient, public and professional stakeholder input and Phase one findings. METHOD: High volume qualitative and quantitative data will be collected longitudinally from people with dementia, carers and practitioners. Analyses will comprise: 1) realist longitudinal case studies; 2) conversation analysis of recorded interactions; 3) statistical analyses of outcome and experience questionnaires; 4 a) health economic analysis examining costs of delivery; 4b) realist economic analysis of high-cost events and 'near misses'. All findings will be synthesised using a joint display table, evidence appraisal tool, triangulation and stakeholder co-analysis. CONCLUSION: Our realist evaluation will describe how, why and for whom the intervention leads (or not) to change over time; it also demonstrates how a non-randomised design can be more appropriate for complex interventions with similar questions or populations