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Background The disproportionate effect of COVID-19 on long term care facility (LTCF) residents has highlighted the need for clear, consistent guidance on the management of pandemics in such settings. As research exploring the experiences of LTCFs during the pandemic and the implications of mass hospital discharge, restricting staff movement, and limiting visitation from relatives are emerging, an in-depth review of policies, guidance and recommendations issued during this time could facilitate wider understanding in this area. Aims To identify policies, guidance, and recommendations related to LTCF staff and residents, in England issued by the government during the COVID-19 pandemic, developing a timeline of key events and synthesizing the policy aims, recommendations, implementation and intended outcomes. Method A scoping review of publicly available policy documents, guidance, and recommendations related to COVID-19 in LTCFs in England, identified using systematic searches of UK government websites. The main aims, recommendations, implementation and intended outcomes reported in included documents were extracted. Data was analysed using thematic synthesis following a three-stage approach: coding the text, grouping codes into descriptive themes, and development of analytical themes. Results Thirty-three key policy documents were included in the review. Six areas of recommendations were identified: infection prevention and control, hospital discharge, testing and vaccination, staffing, visitation and continuing routine care. Seven areas of implementation were identified: funding, collaborative working, monitoring and data collection, reducing workload, decision making and leadership, training and technology, and communication. Discussion LTCFs remain complex settings, and it is imperative that lessons are learned from the experiences during COVID-19 to ensure that future pandemics are managed appropriately. This review has synthesized the policies issued during this time, however, the extent to which such guidance was communicated to LTCFs, and subsequently implemented, in addition to being effective, requires further research. In particular, understanding the secondary effects of such policies and how they can be introduced within the existing challenges inherent to adult social care, need addressing.

Background Recent recommendations promote the inclusion of people living with dementia beyond the role of ‘participant’ to involvement in all areas of the research process. This reflects shifts in dementia studies from ‘research on’ to ‘research with’ people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia. Methods This article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners). Results A flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into ‘accessible statements’ for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase. Conclusions Involvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research. Trial registration The study is registered on the COMET Initiative .

Background Core 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. Methods Three 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. Results One 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). Conclusions This 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.

Background/Objectives: Conversations about end-of-life care or advance care planning are often difficult and emotionally challenging to initiate. Tailoring messages to the specific audiences can make these sensitive discussions more manageable and effective. The Evidence-based Model for the Transfer and Exchange of Research Knowledge (EMTReK), compromising six core components (message, stakeholders, processes, context, facilitation, and evaluation) offers a structured framework for research dissemination and knowledge transfer in palliative and long-term care settings. Knowledge translation bridges research and practice, with its effectiveness depending on stakeholder engagement, tailored communication, and systematic application of evidence in policy and practice. This study explores stakeholder perspectives on a dementia care intervention, using EMTReK as an analytical framework to examine how knowledge transfer and exchange (KTE) actions were implemented across long-term care settings. Methods: A qualitative analysis was conducted on primary data comprising case narratives from multinational research groups involved in the “Caregiver Decision Support” (mySupport) study (2019–2023). Teams from Canada, the Czech Republic, Ireland, Italy, the Netherlands, and the United Kingdom evaluated the mySupport intervention through interviews, with analysis guided by components of the EMTReK model. Results: Facilitated Family Care Conferences were found to be effective mechanisms for supporting knowledge transfer and intervention uptake in dementia care across nursing homes in Europe and Canada. Despite challenges posed by the COVID-19 pandemic, Family Care Conferences adapted through stakeholder engagement, interactive learning, and innovative communication methods. Using EMTReK as an analytical framework, the research team identified key elements that contributed to successful implementation, including the importance of flexibility to accommodate local contexts. Conclusions: The transnational application of the EMTReK model for advance care planning in long-term dementia care highlights the importance of tailored, culturally relevant knowledge translation strategies, which, despite challenges from the COVID-19 pandemic, were successfully implemented through local adaptations and diverse dissemination methods, emphasising the need for further research on their impact on resident and family outcomes.

Background The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. Methods/design Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS. A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance. A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. Discussion To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions. Trial registration The study is registered on the COMET initiative, registered in 2014 at comet-initiative.org .

Background Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the Family Carer Decisional Support intervention is to inform family carers on end-of-life care options for a person living with advanced dementia and enable them to contribute to advance care planning. This implementation study proposes to; 1) adopt and apply the intervention internationally; and, 2) train nursing home staff to deliver the family carer decision support intervention. Methods This study will employ a multiple case study design to allow an understanding of the implementation process and to identify the factors which determine how well the intervention will work as intended. We will enrol nursing homes from each country (Canada n =  2 Republic of Ireland = 2, three regions in the UK n =  2 each, The Netherlands n =  2, Italy n =  2 and the Czech Republic n =  2) to reflect the range of characteristics in each national and local context. The RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework will guide the evaluation of implementation of the training and information resources. Our mixed methods study design has three phases to (1) establish knowledge about the context of implementation, (2) participant baseline information and measures and (3) follow up evaluation. Discussion The use of a multiple case study design will enable evaluation of the intervention in different national, regional, cultural, clinical, social and organisational contexts, and we anticipate collecting rich and in-depth data. While it is hoped that the intervention resources will impact on policy and practice in the nursing homes that are recruited to the study, the development of implementation guidelines will ensure impact on wider national policy and practice. It is our aim that the resources will be sustainable beyond the duration of the study and this will enable the resources to have a longstanding relevance for future advance care planning practice for staff, family carers and residents with advanced dementia.

That older people should be consumers and active agents has dominated policy discourse across health, social care and housing that has a core care function. This discourse has some established and long-standing critics, such as Gilleard and Higgs, and yet the central question(s) a consumerist discourse raises remains surprisingly relevant today. The purpose of this forum article is to reconsider the viability of active agency amongst older people in the context of empirical research on information-giving across health, social care and housing that has been published since the paper by Gilleard and Higgs in 1998. Information-giving is the key consumer choice mechanism, and yet research is currently located in separate literatures. Giving these separate fields some coherence engages with and provides important empirical commentary. There is little or no evidence that information alone triggers active agency for older people in regard to their health, social care or housing. However, there is consistent evidence that discussion, deliberation and dialogue – or the practices associated with Habermas’ theory of communicative action – are desirable to older people in the context of active agency. More research is needed to demonstrate efficacy beyond communicative approaches being desirable.

This article provides an overview of evidence to support a call to action for dementia researchers to ensure that “what matters to people living with dementia” should be at the heart of any decision‐making around the choices and design of outcome measures. There have been sufficient reviews observing how the outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers. If researchers continue to use existing measures that are not valued by people living with dementia, they will waste limited research resources by using measures that are not sufficiently sensitive to detect changes that might be attributed to interventions. It is time for researchers to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia. Highlights Outcome measures that have been used in previous research have not been those that have been valued by people living with dementia or their carers. Existing outcome measures have been shown not to be fit for purpose and tend to focus on symptom reduction or broad conceptualizations of quality of life. Dementia researchers will need to collaborate internationally to ensure that resources are invested in designing and validating new approaches for measurement of psychosocial outcomes for those living with dementia.

Despite calls for better support to empower people when reassessing their housing in later life, two recent literature reviews highlight a paucity of research on the efficacy of such services. This article reports a qualitative realist evaluation on the efficacy of a UK telephone service providing information on specialist housing to older people. The findings of thirty-one realist interviews with sixteen older people are presented. Information-seekers’ existing tenure (social tenant or private owner-occupier/renter) shaped their experience and utilisation of support. Broadly, however, information was considered too ‘light touch’ to empower older people. However, the widely recognised lack of accessible housing options and reports of non-transparent and unresponsive market practices were also key factors. This study underlines the widely acknowledged need to increase the supply of specialist housing, and recommends that housing options support be reflective of market conditions and be more substantive – including discussion, deliberation, education and advocacy.

It is well-established that for a considerable period the United Kingdom has spent proportionally less of its gross domestic product (GDP) on health-related services than almost any other comparable country. Average European spending on health (as a % of GDP) in the period 1980 to 2013 has been 19% higher than the United Kingdom, indicating that comparable countries give far greater fiscal priority to its health services, irrespective of its actual fiscal value or configuration. While the UK National Health Service (NHS) is a comparatively lean healthcare system, it is often regarded to be at a 'crisis' point on account of low levels of funding. Indeed, many state that currently the NHS has a sizeable funding gap, in part due to its recently reduced GDP devoted to health but mainly the challenges around increases in longevity, expectation and new medical costs. The right level of health funding is a political value judgement. As the data in this paper outline, if the UK 'afforded' the same proportional level of funding as the mean average European country, total expenditure would currently increase by one-fifth.