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Background People with dementia and unpaid carers need to go through a social care or carers needs assessment to access and receive subsidised or fully-funded social care. With no previous evidence, this qualitative study aimed to provide insights into the access to, experiences of receiving and conducting social care or carers needs assessments, and access to social care. Methods Unpaid carers of people with dementia and professionals conducting social care or carers needs assessment living or working in England were interviewed remotely about their experiences between April and August 2023. Topic guides were co-produced with two unpaid carers, and both were supported to code anonymised transcripts. Thematic analysis was used to analyse the data. Findings Twenty-seven unpaid carers (n = 21) and professionals (n = 6) participated. Four themes were generated: (1) Issues with accessing needs assessments, not the process; (2) Knowledge of needs assessments and the health and social care system; (3) Expectations of unpaid carers; and (4) Post-assessment unmet needs. The most prominent barriers unpaid carers and their relatives with dementia encountered were awareness of and access to needs assessment. Unpaid carers were mostly unaware of the existence and entitlement to a needs assessment, and sometimes realised they had participated in one without their knowledge. Professionals described the pressures on their time and the lack of financial resources within services. Conclusions To facilitate improved access to dementia care and support for carers, the pathway to accessing needs assessments needs to be clearer, with better integration and communication between health and social care.

This article draws upon six social research studies completed by members of the Dementia and Ageing Research Team at The University of Manchester and their associated networks over an eight-year period (2011–2019) with the aim of constructing a definition of ‘being in the moment’ and situating it within a continuum of moments that could be used to contextualise and frame the lived experience of dementia. Using the approach formulated by Pound et al. (2005) in synthesising qualitative studies, we identified this continuum of moments as comprising four sequential and interlinked steps: (a) ‘creating the moment’, defined as the processes and procedures necessary to enable being in the moment to take place – the time necessary for this to occur can range from fleeting to prolonged; (b) ‘being in the moment’, which refers to the multi-sensory processes involved in a personal or relational interaction and embodied engagement – being in the moment can be sustained through creativity and flow; (c) ‘ending the moment’, defined as when a specific moment is disengaged – this can be triggered by the person(s) involved consciously or subconsciously, or caused by a distraction in the environment or suchlike; and (d) ‘reliving the moment’, which refers to the opportunity for the experience(s) involved in ‘being in the moment’ to be later remembered and shared, however fragmentary, supported or full the recall.

Introduction: Care home residents with dementia often exhibit responsive behaviours including agitation, aggression and wandering. Psychotropic drugs are often prescribed to manage responsive behaviours but contravene guidance as they increase the risk of serious adverse events and death in people with dementia. Aim: This thesis aims to understand how care home staff manage responsive behaviours to identify the barriers and facilitators to implementing a non-pharmacological approach to behaviour management. Methods: This thesis was underpinned by the transformative paradigm and critical theory. A review of qualitative studies was conducted to synthesise understanding of the facilitators or barriers to implementing non-pharmacological strategies to behaviour management (PROSPERO protocol registration CRD42020165948). The findings from the review, in addition to a qualitative survey and patient and public Involvement informed the design of the qualitative interview study to understand how responsive behaviours are managed by care home staff in the Republic of Ireland (ROI) prior to, and during the Covid-19 pandemic. In total, 25 interviews were conducted with staff from 21 care homes across Ireland. Reflexive thematic analysis of qualitative data was informed by Braun and Clarke (2019). All participants provided written informed consent. Ethical approval was obtained from Lancaster University. Findings: The findings from the systematic review and qualitative study found the barriers to taking a non-pharmacological approach to manage responsive behaviours included inadequate staff training and multidisciplinary collaboration. The qualitative study extends current knowledge by showing that a power hierarchy exists between healthcare assistants and nurses that posed a barrier to taking a non-pharmacological approach to behaviour management. Facilitators to taking a non-pharmacological approach included effective leadership and family involvement in resident care. Conclus

Amelia Grindey-Bell, MSc, BSc (Hons), DipHe, RGN De-anchoring and loneliness: the legacy of experiences of stigma and discrimination in the lives of older gay and bisexual men The original aim of this thesis was to explore the life experiences of older lesbian, gay and bisexual (LGB) adults, who grew up in an era of heightened stigma and discrimination, and consider if early life experiences contributed to loneliness in later life. The initial chapters of this thesis focus on the LGB older adult population, however due to difficulties in recruiting lesbian women, the focus of the thesis shifts within the methodology chapter to solely consider the experiences of older gay and bisexual men. Using a narrative inquiry and a sample of 11 men, identifying as gay or bisexual, data were generated through the collection of topical life stories via semi-structured interviews or written accounts. Findings from a thematic narrative analysis indicate that loneliness was a common experience, however, rather than being focussed on later life it occurred on a continuum that fluctuated and peaked at different points in the participants’ lives. The study contributes to knowledge by increasing qualitative understanding of the internal and external factors that contribute to loneliness in the lives of older gay and bisexual men. It introduces the concept of de-anchoring which, when used in conjunction with the social convoy model of social relations, provides a deeper understanding of how earlier life experiences contribute to loneliness. This thesis argues that at different points in their lives, due to their sexual orientation and the societal construction of homosexuality, the participants were de-anchored from important sources of social support, leaving them vulnerable to loneliness throughout their lifetime. Using a narrative life history approach has revealed the importance of understanding how influences across the life course have shaped the ability of gay and bisexua

Background: Nursing homes are places where older people live and often die but little is known about the needs of those who care for them, in Portugal. Aim: to identify the needs of nursing home staff when caring for older people at the end of life; to understand the cultural nuances of providing care at the end-of-life in nursing homes; to develop, with nursing home staff, a culturally appropriate programme that meets their needs; and to plan for future development. Methods: Participatory Action Research was used to identify needs and to develop interventions, designed by the staff themselves, aimed at improving care. Up to ten nursing home staff participated in a six-cycle research process, with data collected, analysed, and used in sequential plan-act-reflect steps. Findings: The silence that surrounds a resident’s death has a severe impact on the lives of those who survive him/her. Lacking competencies in grief management, and with no emotional and relational space to express grief emotions, staff strive to manage their loss, while trying to support other residents. Acknowledging the existence of death and its impact on nursing home life made the invisibility of death and mourning visible, and interventions possible, providing closure to all. Conclusion: The impact of death and dying on nursing home life needs to be recognised. If adequately supported, nursing home staff can develop strategies to manage grief and mourning, to improve their knowledge of the residents’ needs and wishes, improve communication among staff, and ultimately improve care.

The Smoking Drinking Drug Use Survey of adolescents aged 11 to 15 years living in England shows that lifetime drug use by adolescents aged 11 to 15 years has increased (15% to 24%) from 2014 to 2018 (NHS Digital, 2017, 2021b). This upward trend is despite the implementation of drug policies focused on reducing supply, possession, and manufacture of illicit drugs. Based on the premise that drug use is a socially learnt behaviour, the main objective of this research is to investigate whether social learning factors (imitation, parental reinforcement, peer association and attitudes to drug use) mediate drug use in adolescents aged 11 to 15 years living in England. The second objective is to identify which social learning factors mediate drug use by ages, region, and gender. Using the Social Structure Social Learning (SSSL) theory as a framework for the research, this study contributes to the literature by identifying a) the strongest social learning behaviour for each age, gender and region in England and b) the mechanism (mediation) by which social learning affects drug use. This research employs rich data on drug use drawn from the Smoking Drinking Drug Use Survey 2016, a cross-sectional survey of adolescents aged 11-15 years across England (as of October 2021 the data for the most recent survey 2018 was not available for analysis). Mediation analysis was used to evaluate which social learning factors mediate the association between age, gender, region and drug use. The results showed that there were differences in learning behaviours that were specific to age, gender and region. For example, the most significant social learning behaviour for drug use among boys was “imitation of friends”, whilst for females, it was “peer association” among females (i.e. having a perception that peers are using drugs). In addition, having “positive attitudes to glue” (i.e. “it is ok to try glue”) was the strongest learning behaviour for drug use among younger individuals (i.

Background The number of those living with, or providing care for, those with dementia is increasing, projected to quadruple by 2040. Around 700,000 people currently provide unpaid care in the UK to those with dementia. However, knowledge about what it is like to provide such care in domestic home settings for those in the moderate to advanced stages of dementia is limited, especially towards the end of life. Where experiences are known, they are usually described in terms of psychological distress, internal conflict, and powerlessness. One concept that has proven helpful in research with paid carers such as nursing staff is that of moral distress, and it may be that this is also an issue for unpaid or family carers. An initial systematic review with narrative synthesis explored caregivers’ accounts of their experiences within the domestic home setting caring for people with dementia. Caregivers’ account of experiences related to a description of burden, loss, grief and how they deal with challenges while caring for someone living with dementia. The conduct of this empirical study was informed by the results of the review. Research question What are the narratives of care provision by family carers, and how do they describe their experience of home-based care for people with moderate to advanced dementia towards the end of life? Design and methods A narrative inquiry design was adopted using unstructured interviews with family carers for people living with moderate to advanced dementia and cared for within a domestic home setting. Participants were purposively selected and recruited through UK organisations offering services both to the family carers and the care recipient. A narrative technique was employed in data collection and a textual narrative approach was adopted in analysing the data. Findings Fifteen participants took part in this study. Their narratives were presented under five headings of loss, control, role change, coping and help-seeking. Their experi

BACKGROUND: Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. OBJECTIVE: The aim of this study is to investigate the feasibility and acceptability of the DemPower app. METHODS: A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. RESULTS: The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. CONCLUSIONS: T

INTRODUCTION: Around 70% of acute hospital beds in the UK are occupied by older people, approximately 40% of whom have dementia. Improving the quality of care in hospitals is a key priority within national dementia strategies. Limited research has been conducted to evaluate dementia training packages for staff, and evaluation of training often focuses on immediate, on-the-day training feedback and effects. OBJECTIVES: Our study aims to answer two research questions: (1) How do variations in content, implementation and intensity of staff dementia training in acute hospitals in England relate to health service outcome/process measures and staff outcomes? and (2) What components of staff dementia training are most strongly related to improved patient and staff outcomes? METHODS AND ANALYSIS: Using the principles of programme theory, a mixed-method study will be used to identify mechanisms and the interactions between them, as well as facilitators and barriers to dementia training in hospitals. We will use existing data, such as Hospital Episode Statistics, alongside two surveys (at hospital and staff level).We will recruit up to 193 acute hospitals in England to participate in the hospital level survey. We aim to recruit up to 30 staff members per hospital, from a random sample of 24 hospitals. In addition, we will explore the cost-effectiveness of dementia training packages and carry out an in-depth case study of up to six hospitals. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Faculty of Health and Medicine Research Ethics Committee (FHMREC 17056) and Health Research Authority (Integrated Research Approval System (IRAS) ID 242166: REC reference 18/HRA/1198). We plan to develop both standard (eg, academic publications, presentations at conferences) and innovative (eg, citizen scientist web portals, online fora, links with hospitals and third sector organisations) means of ensuring the study findings are accessible and disseminated regional

Objectives Inconsistency in outcome measurement in dementia care trials impedes comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Method We used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018. Results Of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers) 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items. Conclusion We identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions that are most likely to be valued highly by people living with dementia.

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

INTRODUCTION: Around 70% of acute hospital beds in the UK are occupied by older people, approximately 40% of whom have dementia. Improving the quality of care in hospitals is a key priority within national dementia strategies. Limited research has been conducted to evaluate dementia training packages for staff, and evaluation of training often focuses on immediate, on-the-day training feedback and effects. OBJECTIVES: Our study aims to answer two research questions: (1) How do variations in content, implementation and intensity of staff dementia training in acute hospitals in England relate to health service outcome/process measures and staff outcomes? and (2) What components of staff dementia training are most strongly related to improved patient and staff outcomes? METHODS AND ANALYSIS: Using the principles of programme theory, a mixed-method study will be used to identify mechanisms and the interactions between them, as well as facilitators and barriers to dementia training in hospitals. We will use existing data, such as Hospital Episode Statistics, alongside two surveys (at hospital and staff level).We will recruit up to 193 acute hospitals in England to participate in the hospital level survey. We aim to recruit up to 30 staff members per hospital, from a random sample of 24 hospitals. In addition, we will explore the cost-effectiveness of dementia training packages and carry out an in-depth case study of up to six hospitals. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the Faculty of Health and Medicine Research Ethics Committee (FHMREC 17056) and Health Research Authority (Integrated Research Approval System (IRAS) ID 242166: REC reference 18/HRA/1198). We plan to develop both standard (eg, academic publications, presentations at conferences) and innovative (eg, citizen scientist web portals, online fora, links with hospitals and third sector organisations) means of ensuring the study findings are accessible and disseminated regional

Objectives Inconsistency in outcome measurement in dementia care trials impedes comparisons of effectiveness between trials. The key aim of this study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Method We used a mixed-methods research design, including substantive qualitative research with five key stakeholders groups. We consulted with people living with dementia for many aspects of this research. We applied a modified two-round 54 item Delphi approach to attain consensus on core outcomes. The COS was finalised in a face-to-face consensus meeting in 2018. Results Of the 288 who completed round 1 (21 people living with dementia, 58 care partners, 137 relevant health and social care professionals, 60 researchers, 12 policy makers) 246 completed round 2 (85% response rate). Twenty participants attended the consensus meeting. We reached consensus for the inclusion of 13 outcome items. Conclusion We identified 13 outcome items which are considered core; many relate to social health. Providing there are adequate measures, measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. The items will provide commissioners and service planners with information on what types of interventions that are most likely to be valued highly by people living with dementia.

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.