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39 result(s) for "Morgan-Trimmer, Sarah"
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Early presentations of dementia in a diverse population
INTRODUCTION Improved recognition of non‐cognitive presentations of dementia could reduce inequalities in dementia diagnosis, particularly if sociocultural factors influence help‐seeking for cognitive symptoms. METHODS We conducted a nested case‐control study using electronic healthcare records from primary care practices in East London, United Kingdom, to assess associations between prediagnostic presentations to primary care and subsequent dementia diagnosis. RESULTS We included 4137 individuals with a dementia diagnosis and 15,754 controls in the matched analysis. In addition to memory difficulties, a range of symptoms were more common in the decade before diagnosis, including depression, anxiety, use of antipsychotics, insomnia, constipation, incontinence, hypotension, hearing loss, imbalance, and dizziness. DISCUSSION A range of non‐cognitive presentations are seen during the prodromal period of dementia in a diverse population. Improved recognition of these associations and their variation by ethnicity could increase access to dementia diagnosis through improved recognition of early features in people from different sociocultural backgrounds. Highlights Prediagnostic signs of dementia include cognitive and non‐cognitive symptoms. Psychiatric symptoms are common up to a decade prior to a dementia diagnosis. Autonomic prediagnostic symptoms are more common among South Asian groups. The importance of prediagnostic symptoms of dementia varies by ethnicity.
The dynamics of decision-making in weight loss and maintenance: a qualitative enquiry
Background Behavioural approaches to weight loss are often initially successful but less so in the longer term, as some people maintain the necessary behaviour changes while others do not. This study aimed to derive possible explanations for this using a qualitative approach with a view to improving intervention effectiveness. Methods Thirty-six participants in a development and feasibility study for a weight loss and maintenance intervention (called SkiM) were interviewed three times over 18 months regarding their experiences before, during and after the intervention. Data were analysed thematically. The accounts of those who were more and less successful in terms of longer term weight loss were compared, and a conceptual model linking the main analytic themes was developed. Results Five interpretative themes were generated: encountering and managing key situations; the impact of emotion; the source of control; personal values; and acquiring knowledge and skills. These themes were linked through a model of decision-making during key situations. In this model, behavioural decisions emerge from a dynamic interplay between several drivers: emotional state and needs, perceived control, personal values, the individual’s knowledge and skills, and their existing habits. The individual’s response in key situations generates experiential learning that can influence decisional dynamics in similar situations in future. These dynamics appeared to differ between participants, and between those who were more and less successful in weight management. Conclusions Our analysis and model of decision-making during weight-management have implications for the development and delivery of behavioural weight management interventions. By helping individuals to identify the drivers of their decision-making in key situations, and equipping them to manage these drivers, programmes may enhance their capacity to sustain the behaviour changes needed for long-term weight loss.
The design and development of a home-based rehabilitation programme for those recovering after an episode of delirium
Background Delirium, closely linked to increasing age and frailty, is a growing concern in the aging population, yet there is little understanding about how to support recovery for individuals and their carers. This paper details the design and development of RecoverED, a home-based rehabilitation intervention for delirium recovery. Methods A realist-informed approach was used to develop a programme theory and logic model for RecoverED. A rapid realist review had identified strategies for delirium recovery, followed by interviews with stakeholders (older adults, carers, and professionals), and an expert panel discussion. The intervention was then developed based on the refined programme theory of what had worked to improve recovery from delirium, for whom, and in what context. Results The RecoverED intervention, described using the TIDieR checklist, was a complex, multicomponent, 12 week home-based programme delivered by a multidisciplinary team in up to 10 sessions. The intervention comprised cognitive, physical, and psychosocial components. An intervention manual and training programme had been developed to support delivery teams. Conclusion The RecoverED intervention was being evaluated in a multi-centre feasibility trial with a qualitative process evaluation. This paper describes theory-based rehabilitation interventions for long-term delirium recovery. Further research through a randomised controlled trial is needed to assess its effectiveness and cost-effectiveness before broader implementation.
How do primary care consultation dynamics affect the timeliness of cancer diagnosis in people with one or more long-term conditions? A qualitative study
ObjectivesTo explore how pre-existing conditions affect the diagnostic process for potential cancer in primary care patients.DesignQualitative interview study using thematic analysis underpinned by a critical realist approach.SettingPrimary care practices recruited through four Clinical Research Networks and UK health charities across England.ParticipantsInterviews were conducted with 75 patients with one or more pre-existing conditions (anxiety/depression, diabetes, obesity, chronic obstructive pulmonary disease, Parkinson’s disease or multiple long-term conditions (four or more)) and 28 primary care professionals (general practitioners and nurses).ResultsThe study identified legitimacy as a central theme influencing patient trajectories in the health system while trying to receive a diagnosis for symptoms with which they presented to primary care. Patients engaged in self-triage to determine whether symptoms were ‘legitimate’ enough to seek care. Subsequent triaging steps (by receptionists, nurses and online systems) acted as gatekeepers, with decisions influenced by effectiveness of describing the symptom and subjective impressions. During consultations, clinicians relied on a mix of symptom narrative clarity, medical history and objective ‘metrics’ (eg, blood results, family history) to determine legitimacy for further investigations. Pre-existing conditions could either lower the threshold for referrals or obscure potential cancer symptoms. The stigma associated with mental health diagnoses often undermined perceived legitimacy and contributed to delays.ConclusionsLegitimacy is continuously negotiated throughout the diagnostic pathway. It is shaped by social, moral and biomedical judgements. To promote early cancer diagnosis for patients with pre-existing conditions, clinicians must make legitimacy assessments explicit, reduce stigma especially around mental health and standardise triage processes.
How might secondary dementia prevention programs work in practice: a pre-implementation study of the APPLE-Tree program
Background Over 850,000 people in the UK currently have dementia, and that number is expected to grow rapidly. One approach that may help slow or prevent this growth is personalized dementia prevention. For most people, this will involve targeted lifestyle changes. These approaches have shown promise in trials, but as of yet, the evidence for how to scale them to a population level is lacking. In this pre-implementation study, we aimed to explore stakeholder perspectives on developing system-readiness for dementia prevention programs. We focused on the APPLE-Tree program, one of several low-intensity, lifestyle-based dementia prevention interventions currently in clinical trials. Methods We conducted semi-structured interviews with health and social care professionals without previous experience with the APPLE-Tree program, who had direct care or managerial experience in services for older adults with memory concerns, without a dementia diagnosis. We used the Consolidated Framework for Implementation Research to guide interviews and thematic analysis. Results We interviewed 26 stakeholders: commissioners and service managers ( n  = 15) and frontline workers ( n  = 11) from eight NHS and 11 third sector organizations throughout England. We identified three main themes: (1) favorable beliefs in the effectiveness of dementia prevention programs in enhancing cognition and wellbeing and their potential to fill a service gap for people with memory concerns, (2) challenges related to funding and capacity to deliver such programs at organizations without staff capacity or higher prioritization of dementia services, and (3) modifications to delivery and guidance required for compatibility with organizations and patients. Conclusion This study highlights likely challenges in scale-up if we are to make personalized dementia prevention widely available. This will only be possible with increased funding of dementia prevention activities; integrated care systems, with their focus on prevention, may enable this. Scale-up of dementia prevention programs will also require clear outlines of their core and adaptable components to fit funding, patient, and facilitator needs.
Digital technologies to support people living with dementia in the care home setting to engage in meaningful occupations: protocol for a scoping review
Background People living with all stages of dementia should have the opportunity to participate in meaningful occupations. For those living in care homes, this may not always occur and residents may spend significant parts of the day unengaged, especially those living with more advanced dementia. Digital technologies are increasingly being used in health care and could provide opportunities for people living with dementia (PLWD) in care homes to engage in meaningful occupations and support care staff to provide these activities. With technology advancing at a rapid rate, the objective of this scoping review is to provide an up-to-date systematic map of the research on the diverse range of digital technologies that support engagement in meaningful occupations. In particular, focus will be given to barriers and facilitators to inform future intervention design and implementation strategies, which have not yet been clearly mapped across the full range of these digital technologies. Method A scoping review will be conducted to systematically search for published research using a comprehensive search strategy on thirteen databases. Published, peer-reviewed studies that focused on PLWD in the care home setting and assessed any form of digital technology that supported a meaningful occupation will be included. All methodologies which meet the criteria will be included. Data will be extracted and charted to report the range of digital technologies, underlying mechanisms of action, facilitators and barriers to implementation. Discussion Mapping the range of technologies to support PLWD to engage in meaningful occupations will identify gaps in research. The systematic search will include a diverse range of technologies such as software to enhance care planning, tablets devices, smartphones, communication robots and social media platforms, rather than focussing on a specific design or interface. This will enable comparison between mechanisms of action, barriers and facilitators to implementation which will be useful for future research and intervention design. Trial registration Open Science Framework https://doi.org/10.17605/OSF.IO/7UDM2
Using a Realist Informed Qualitative Approach to Elaborate Programme Theory: Experiences From the Feasibility Phase of the D-PACT Project
Realist approaches to complex health care evaluations are increasingly used and recommended in national evaluation guidelines. However, there remains a paucity of researcher guidance on methods for elaborating and refining programme theories throughout the stages of a realist evaluation project—from prospective theory development to feasibility work, to full evaluation. We present a step by step worked example of a realist approach to elaborating a programme theory for a health care intervention during the feasibility phase of the Dementia PersonAlised care Team. We explain how multiple qualitative methods can be applied to elaborate initial theory, supporting a shift away from a hypothetical explanation, towards a theory of how the model works in practice. We reflect on what worked well, and problems encountered, attending to both processes and the impact of working. Details are provided on how this approach can help enhance the likelihood of the intervention working in practice—through the application of new insights to interventionists’ training resources. We argue that coding to a framework constructed of ’If-Then’ initial programme theory statements enabled researchers to develop a realist analytic mindset and elaborated programme theory, ready for a fuller evaluation of the D-PACT intervention.
Implementation processes in a cognitive rehabilitation intervention for people with dementia: a complexity-informed qualitative analysis
ObjectivesHealthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of ‘self-organisation’ can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREAT (Goal-oriented cognitive Rehabilitation in Early-stage Alzheimer’s and related dementias: a multi-centre single-blind randomised controlled Trial) intervention which compared a cognitive rehabilitation intervention for people with dementia with usual treatment.DesignA process evaluation examined experiences of GREAT therapists and participants receiving the intervention, through thematic analysis of a focus group with therapists and interviews with participants and their carers. Therapy records of participants receiving the intervention were also analysed using adapted framework analysis. Analysis adopted a critical realist perspective and a deductive-inductive approach to identify patterns in how the intervention operated.SettingThe GREAT intervention was delivered through home visits by therapists, in eight regions in the UK.ParticipantsSix therapists took part in a focus group, interviews were conducted with 25 participants and 26 carers, and therapy logs for 50 participants were analysed.InterventionA 16-week cognitive rehabilitation programme for people with mild-to-moderate dementia.Results‘Self-organisation’ of the intervention occurred through adaptations made by therapists. Adaptations included simplifying the intervention for people with greater cognitive impairment, and extending it to meet additional needs. Relational work by therapists produced an emergent outcome of ‘social support’. Self-organised aspects of the intervention were less visible than formal components, but were important aspects of how it operated during the trial. This understanding can help to inform future implementation.ConclusionsResearchers are increasingly adopting complexity theory to understand interventions. This study extends the application of complexity theory by demonstrating how ‘self-organisation’ was a useful concept for understanding aspects of the intervention that would have been missed by focusing on formal intervention components. Analysis of self-organisation could enhance future process evaluations and implementation studies.Trial registration numberISRCTN21027481.
Process evaluation of the New Interventions for independence in Dementia Study (NIDUS) Family stream randomised controlled trial: protocol
IntroductionNew Interventions for independence in Dementia Study (NIDUS)-Family is an Alzheimer’s Society funded new manualised, multimodal psychosocial intervention to support people living with dementia (PLWD) to achieve goals that they and their family carers set, towards living as independently and as well as possible at home for longer. This process evaluation will be embedded within the NIDUS-Family Randomised Controlled Trial intervention-arm (n=199), testing how the intervention influences change, as measured by goal attainment. The evaluation will test, refine and develop the NIDUS-Family theoretical model, associated causal assumptions and logic model to identify key mechanisms of impact, implementation and contextual factors influencing the intervention’s effectiveness. Findings will inform how the programme is implemented in practice.Methods and analysisThe process evaluation will be theory driven and apply a convergent mixed-methods design. Dyads (PLWD and family carer) will be purposively sampled based on high or low Goal Attainment Scaling scores (trial primary outcome). Qualitative interviews with dyads (approx. n=30) and their respective facilitators post-trial will explore their experiences of receiving and delivering the intervention. Interviews will be iteratively thematically analysed. Matching observational quantitative data will be collected concurrently from videorecordings and/or audiorecordings of NIDUS-Family dyad trial sessions. Further quantitative data will be collected through an acceptability questionnaire for all intervention-arm dyads (n=199). Mixed-method integration will use an interactive analysis strategy, considering qualitative and quantitative findings through mixed-method matrix for dyadic level ‘case studies’, and a joint display for ‘population’ level analysis and interpretation.Ethics and disseminationEthical approval was received from Camden & Kings Cross Research Ethics Committee (REC). Study reference: 19/LO/1667. IRAS project ID: 271 363. This work is carried out within the UCL Alzheimer’s Society Centre of Excellence (grant 300) for Independence at home, NIDUS programme.Findings will be disseminated through publications and conferences, and as recommendations for the implementation study and strategy.Trial registration numberISRCTN11425138.
Maintaining independence in individuals with dementia at home after a fall: a protocol for the UK pilot cluster randomised controlled trial MAINTAIN
IntroductionIndividuals with dementia face an increased risk of falls. Falls can cause a decline in the individual’s overall functionality. All types of falls, including those that do not result in injury, can lead to psychosocial consequences, such as diminished confidence and a fear of falling. Projections indicate a rising trend in dementia diagnoses, implying an increase in fall incidents. Yet, there is a lack of evidence to support interventions for people living with dementia who have fallen. Our objective is to test the feasibility of a falls intervention trial for people with dementia.Method and analysisThis is a UK-based two-arm pilot cluster randomised controlled trial. In this study, six collaborating sites, which form the clusters, will be randomly allocated to either the intervention arm or the control arm (receiving treatment as usual) at a 1:1 ratio. During the 6 month recruitment phase, each cluster will enrol 10 dyads, comprising 10 individuals with dementia and their respective carers, leading to a total sample size of 60 dyads. The primary outcomes are the feasibility parameters for a full trial (ie, percentage consented, follow-up rate and cost framework). Secondary outcomes include activities of daily living, quality of life, fall efficacy, mobility, goal attainment, cognitive status, occurrence of falls, carer burden and healthcare service utilisation. Outcome measures will be collected at baseline and 28 weeks, with an additional assessment scheduled at 12 weeks for the healthcare service utilisation questionnaire. An embedded process evaluation, consisting of interviews and observations with participants and healthcare professionals, will explore how the intervention operates and the fidelity of study processes.Ethics and disseminationThe study was approved by the NHS and local authority research governance and research ethics committees (NHS REC reference: 23/WA/0126). The results will be shared at meetings and conferences and will be published in peer-reviewed journals.Trial registration numberISRCTN16413728.