Emily Fisher

BACKGROUND There are numerous barriers to recruiting and engaging people living with motor neuron disease (MND), or amyotrophic lateral sclerosis, in research studies. Some MND research requires in-person participation, which can create obstacles to recruitment and engagement. A digital research platform can enhance access to MND research and improve data integrity. OBJECTIVE To introduce and describe the development of the Telehealth in MND-Research platform (TiM-Research) developed by the UK MND Research Institute (UKMNDRI). TiM-Research is a self-sign-up platform that connects people living with MND with research opportunities and collects longitudinal patient-reported outcome measures. METHODS We describe the development of the TiM-Research platform, including functionality, data management and governance. To explore the acceptability of the TiM-Research platform and identify potential barriers and benefits of using a digital research platform for remote MND research, semi-structured qualitative interviews were conducted with key stakeholders (people living with MND, informal carers, researchers, and industry professionals). Data were analysed using thematic analysis. RESULTS In the 12 months since its launch in December 2024, 100 people with MND have enrolled in TiM-Research. Nine research studies have used TiM-Research for remote recruitment. To date, 3,065 patient-reported outcome measures have been collected in the longitudinal dataset. Interviews with 28 stakeholders revealed four main themes: 1) Challenges in MND research: the impact on deterioration of health and concerns about potential burden for participants, even in remote research, due to the number of different opportunities presented. 2) Benefits of the TiM-Research platform to overcome these challenges: a centralised system to standardise recruitment and data collection, and capture valuable longitudinal changes. 3) Implementation: the need for clear guidelines, robust regulations, data ownership definitions, and long-term sustainability. 4) Future recommendations for TiM-Research usage: the need for the platform to support hybrid data collection, integrating both remote and in-person methods. CONCLUSIONS Stakeholders supported the need for TiM-Research, recognising its potential to overcome key barriers in MND research. However, they raised concerns about the potential measurement burden that must be considered in the future. The platform is seen as a promising, helpful tool for advancing research and democratising participation. Future work will evaluate and refine the platform to ensure accessibility and ethical, sustainable operation.

Objectives: Wandering is a common behaviour among people with dementia living in care homes, driven by various factors such as enjoyment, a sense of purpose, lifelong habits, and social interaction. These elements can bring both physical and mental benefits, highlighting the need for strategies that enable safe wandering while respecting individual autonomy. This realist synthesis aimed to explore these strategies and the conditions under which they lead to successful outcomes. Methods: This realist synthesis involved scoping the literature to develop initial theoretical explanations for how different strategies could support safe wandering. From this literature, we developed context-mechanism-outcome configurations, which we combined into initial programme theories (IPTs). Systematic searches were then used to test and refine these programme theories. Studies were prioritised for inclusion based on criteria of relevance and richness. We extracted data pertinent to the IPTs and documented relevance, richness, and rigour. We synthesised data into five refined programme theories. At each stage of the process, we collaborated with stakeholders to develop and validate the strategies. Results: The review included 79 evidence sources, leading to five refined programme theories. 1) Personalised Care : Emphasising the importance of staff practicing person-centred care by understanding residents, their reasons for wandering, and their life histories. 2) Monitoring : Effective monitoring requires good visual access or technological solutions that enable staff to observe residents, and detect when residents need support to walk while also enabling resident freedom and independence. 3) Navigation : Navigation is facilitated by dementia-friendly design features and environmental cues, which help minimise the challenges residents face due to diminished orientation and wayfinding abilities. 4) Managing access : Involving balancing residents’ safety and autonomy. Strategies may include restricting access to unsafe areas by locking doors or using technology and camouflage, while ensuring access to safe spaces. 5) Hydration and nutrition : Hydration and nutrition (e.g., suitable snacks) is provided to prevent weight loss for residents who wander and may not stay seated during meals. These theories provide insight into supporting safe wandering, leading to improved wellbeing for both residents and staff, enhanced safety and autonomy for residents, and reduced staff anxiety. Discussion: Strategies that create a supportive environment, provide physical assistance, and support hydration and nutrition enabled residents to wander safely. Identified strategies improved wellbeing for both residents and staff. However, the same strategies also led to ethical concerns around digital monitoring, deception, and access restrictions. Study registration: The protocol was registered with PROSPERO (CRD2024559085). Highlights: What is known: There are many barriers to supporting people to wander safely in care homes despite the physical and mental health benefits this may bring There is little knowledge of which strategies work for whom and in what circumstances What this paper adds: We identified and synthesised strategies to promote safe wandering in care homes, relating to personalised care, monitoring, navigation, managing access, and hydration and nutrition Residents’ independence and autonomy, along with the well-being of both residents and staff, are enhanced when residents can wander safely Some strategies raise ethical concerns related to digital monitoring, deception, and access restrictions

Objectives: Psychosocial interventions play a vital role in addressing the complex needs of people with dementia in care homes. Cognitive stimulation and reminiscence therapy are recommended by the UK National Institute for Health and Care Excellence to support the cognition, independence, and wellbeing of people with dementia, and crucially, they can be delivered by care home staff or non‐specialist interventionists. This review aims to explore factors that influence the implementation of cognitive stimulation and reminiscence therapy for people with dementia delivered by staff in care homes. Methods: Ten electronic databases were searched between 2000 and April 2024. Two reviewers systematically appraised the studies for inclusion using pre‐specified criteria and their quality using the Critical Appraisal Skills Programme (CASP) and Mixed Methods Appraisal Tool (MMAT) checklists. Data was analysed thematically using a deductive approach based on the updated Consolidated Framework for Implementation Research (CFIR), and findings were synthesised narratively. Results: Nine studies were included; three focussed on reminiscence therapy, and six on cognitive stimulation. All interventions were delivered in care homes by care home staff. Many studies were excluded because a research team member delivered the intervention. Overall, the quality of the studies was low. Key facilitators to implementation were the availability of standardised manuals or resources, the adaptability of interventions, and staff training and support. Barriers included a lack of staff time and availability and a lack of perceived support from care home management. Most studies collected quantitative outcomes, and a minority collected qualitative information about implementation experiences and perceptions of the intervention. No studies collected qualitative data from people with dementia or their carers. Conclusions: The review highlights the field's reliance on research staff to deliver interventions rather than training and involving care home staff in evaluating interventions. Additionally, there is a lack of qualitative data from people with dementia and their families regarding their views, preferences, and experiences related to participating in psychosocial interventions in care homes. There is a pressing need for high‐quality evidence on the implementation of interventions for dementia, which involves collaboration, consultation and co‐design with those who will deliver the intervention routinely and the people with dementia who will receive the intervention. Trial Registration: CRD42022313337

Cognitive Stimulation Therapy (CST) is a group psychosocial intervention for people with mild-to-moderate dementia. Despite evidence supporting its effectiveness, cost-effectiveness, and cultural adaptation internationally, CST has yet to be implemented in routine practice outside of the UK. This study consisted of multiple phases. In the first phase, we engaged stakeholders to explore the barriers and facilitators to CST implementation in Tanzania. In the second phase, we developed implementation strategies. In the third phase, we tested these strategies in a study of CST in a tertiary hospital in northern Tanzania. The Consolidated Framework for Implementation Research (CFIR) guided the study. We conducted stakeholder engagement with decision-makers, healthcare professionals, people with dementia and their family caregivers (n = 49) to identify barriers and facilitators to implementation. We developed an implementation plan that included 20 implementation strategies related to 12 CFIR constructs. Subsequently, we tested these strategies by running eight CST groups with 49 participants. In follow-up interviews with people with dementia, carers and healthcare professionals, we identified 18 key CFIR constructs as barriers or facilitators to successfully implementing CST. CST was compatible with the standards of care in a tertiary referral hospital in northern Tanzania. To implement CST in low-resource settings, we recommend running dementia awareness initiatives, screening for dementia in outpatients and community settings, developing a train-the-trainer model, employing a task-shifting approach, and creating a dementia-friendly space for dementia services. Our findings can inform future efforts to implement CST and other psychosocial interventions for dementia in low-resource settings.

Introducción: La Terapia de Estimulación Cognitiva (TEC) se originó en el Reino Unido. Se trata de un programa de estimulación que ha demostrado en un estudio multicéntrico, leatorizado y de diseño controlado beneficios en la cognición y la calidad de vida de los pacientes con demencia. La TEC fue adaptada e implementada en más de 30 países. Consiste en 14 sesiones grupales, semanales para 6 a 8 participantes. Material y Método: En este trabajo presentamos la adaptación cultural de la Terapia de Estimulación Cognitiva siguiendo las directrices para la adaptación de la terapia de estimulación cognitiva a otras culturas traducidas al español para ser utilizadas en nuestro país. Utilizamos el método de adaptación, denominado “Modelo Formativo para adaptar Psicoterapia” (MFP), “de abajo hacia arriba”, que está fundado en la consulta a la comunidad. Iniciamos el proceso con la traducción del manual, posteriormente lo adaptamos con la información obtenida en consultas a pacientes, familiares, cuidadores y profesionales de la salud. Finalmente probamos la viabilidad y la adecuación cultural de la Terapia al español. Resultados: Se necesitaron algunas modificaciones, especialmente relacionadas con cuestiones lingüísticas, en 10 de las 14 sesiones. Pudimos realizar una adaptación culturalmente apropiada de esta Terapia para Argentina. El manual de sistematización y adaptación cultural está listo para ser utilizado para su implementación y validación en un mayor número de grupos y en diferentes lugares del país.

Objectives: This study aimed to understand the care needs, care arrangements and burden of care for people with dementia in Northern Tanzania. Methods: This was a cross-sectional, observational study. People with dementia and their carers ( n = 53) were recruited from an outpatient clinic, and data on carer burden and independence in activities of daily living were collected. Associations with carer burden and characteristics were explored through non-parametric tests and regression analyses. Results: Thirty-six carers were female (68%). Levels of impairment in instrumental activities of daily living were high, with a median score of 38 out of 44 on the Identification and Intervention for Dementia in Elderly Africans – Instrumental Activities of Daily Living (IDEA-IADL). Carer burden was moderate with a median Zarit Burden Interview (ZBI) score of 46 out of 88. Being a female carer was associated with higher carer burden (odds ratio 3.68, 95% CI 1.04–12.99). Discussion: Carer burden was found to be higher than in previous studies based in low-and-middle income countries. Further research is needed to explore this difference, and to identify interventions to support care needs and reduce carer burden.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Cognitive stimulation therapy (CST) is an evidence-based, group psychosocial intervention for people with dementia, and it has a positive impact on cognition and quality of life. CST has been culturally adapted for use globally. It was developed as a face-to-face intervention but has recently been adapted for web-based delivery. Objective: In this study, we aimed to explore the feasibility and acceptability of virtual CST (vCST) delivery in India and Brazil, emphasizing barriers and facilitators to implementation. Methods: A single-group, multisite, mixed methods, feasibility study was conducted, with nested qualitative interviews. Primary feasibility outcomes were recruitment rate, attendance, attrition, acceptability, and outcome measure completion. Exploratory pre- and postintervention measures, including cognition and quality of life, were assessed. Qualitative interviews were conducted with people with dementia, family caregivers, and group and organizational leaders following intervention delivery, and the data were analyzed using the Consolidated Framework for Implementation Research. Results: A total of 17 vCST group sessions with 59 participants were conducted for 7 weeks, with 53% (31/59) of participants attending all 14 sessions. Attrition rate was 7% (4/59), and outcome measure completion rate at follow-up was 68% (40/59). Interviews took place with 36 stakeholders. vCST was acceptable to participants and group leaders and enabled vital access to services during pandemic restrictions. While web-based services broadened geographic access, challenges emerged concerning inadequate computer literacy, poor technology access, and establishing interpersonal connections online. Exploratory, uncontrolled analyses indicated positive trends in quality of life but negative trends in cognition and activities of daily living, but these results were not statistically significant. Conclusions: vCST demonstrated feasibility and acceptability, serving as a crucial resource during the pandemic but raised challenges related to technology access, computer literacy, and long-term implementation. The study highlights the potential of vCST while emphasizing ongoing development and solutions to address implementation challenges.

Cognitive stimulation therapy (CST) is an evidence-based group intervention for people with dementia, with benefits for cognition and quality of life when delivered face-to-face. Many people are unable to attend face-to-face groups for reasons including health and transport issues. This study aimed to assess the feasibility and acceptability of online or “virtual” CST (vCST). Single-blind, randomized controlled feasibility design with qualitative interviews. Forty-six people with mild-to-moderate dementia were randomly allocated to attend either 14 sessions of twice-weekly vCST (n = 24) or treatment as usual (TAU, defined as usual care; n = 22) over 7 weeks. Cognition, quality of life, and depression were assessed pre- and posttreatment. Qualitative interviews (n = 16) with participants and carers were analyzed using thematic analysis. High levels of attendance, adherence, fidelity to the manual, and completion of outcomes were recorded. Recruitment appeared feasible although randomization may not have been acceptable to some. There were no statistical differences noted between vCST and TAU in any of the outcomes evaluated, although both quantitative and qualitative data indicated acceptability, with qualitative reports of improved outcomes including cognition. vCST appeared feasible to deliver but did not result in any changes in outcomes, as expected from an underpowered feasibility trial. CST is the main psychosocial intervention delivered for dementia in UK memory services and globally, with many services moving towards virtual CST delivery. Therefore, a fully powered RCT of the effectiveness of vCST is feasible and justified.

Introduction: Tanzania is a low-income country with an increasing prevalence of dementia, which provides challenges for the existing healthcare system. People with dementia often don’t receive a formal diagnosis, and with a lack of formal healthcare, are often predominantly supported by family relatives. There are very few published data relating to lived experiences of people with dementia in Tanzania. This study aimed to understand people with dementia, and their caregivers’ experiences of living with dementia in Tanzania and the perceived needs of people with dementia. Methods: Qualitative, semi-structured interviews were conducted with 14 people with dementia and 12 caregivers in Moshi, Tanzania. Interviews were audio-recorded, translated, transcribed and analysed using a Framework Analysis approach. Results: Three sub-themes were identified within data describing the experience of ‘Living with Dementia in Tanzania’: ‘Deteriorations in Health’, ‘Challenges to living with Dementia in Tanzanian Culture’, and ‘Lack of Support’: people with dementia faced challenges due to social isolation, stigmatisation, and lack of caregiver knowledge on how best to provide support. Collectively, these impacted on both the physical and mental health of people with dementia. Misconceptions about dementia aetiology related to age, stresses of daily life and other co-morbidities. People with dementia were motivated to access treatment, exhibiting pluralistic health-seeking behaviours. There was an overall preference for non-pharmacological interventions over medication, with high levels of trust in medical professional opinions. Conclusions: Living with dementia in Tanzania is influenced by both cultural and religious factors. More work is needed to target supplementary healthcare (with efforts to promote accessibility), support for caregivers and public health education about dementia to overcome existent misconceptions and stigma.