Introduction: People living alone with neurodegenerative conditions face unique difficulties in maintaining independence and accessing appropriate health and social care support. Consolidating current understanding regarding these unique difficulties would better inform health and social care services and enable more tailored and appropriate service delivery. The proposed scoping review will summarise evidence from studies that provide evidence about people with dementia, Parkinson's disease, Huntington's disease, or motor neurone disease who live alone. Methods and Analysis: This scoping review protocol uses well-established methodology outlined by the Preferred Reporting Items for Systematic review and Meta-Analysis and the Joanna Briggs Institute. Relevant publications will be searched using PubMed, Web of Science Core Collection, CINAHL and AgeLine via EBSCOhost, and EMBASE, PsycInfo, and Social Policy and Practice via Ovid. Grey literature will be searched via Google looking specifically for pdf documents. No date restrictions will be applied to the searches. For research publications a two-stage screening approach will be undertaken. The first stage will involve screening titles and abstracts for relevant literature on people with neurodegenerative conditions living alone in the community. The second stage will involve full text screening of selected articles. For grey literature the first 20 pdfs per website identified in Google will be downloaded and screened. Summary data will be extracted from publications selected for inclusion. Data synthesis will involve tabulating study characteristics and findings and preparing narrative summaries to identify commonalities, gaps, and areas for future research. Ethics and Dissemination: Ethical approval is not required for this review. Consultation with people with lived experience, stakeholders and experts linked with the National Institute for Health and Care Research (NIHR) Policy Research Unit in Dementia and Neurodegeneration University of Exeter (DeNPRU Exeter), will help to ensure the relevance and applicability of findings. Dissemination will include a policy report and a peer-reviewed publication aimed at informing policy, practice, and improving support services for people living alone with neurodegenerative conditions. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This work was supported by National Institute for Health and Care Research (NIHR) Policy Research Unit in Dementia and Neurodegeneration (University of Exeter), reference NIHR206120. The grant was awarded to Linda Clare, Martin Knapp, Adelina Comas Herrera, David Burn, Louise Robinson, John-Paul Taylor, Matthew Prina, Jan Oyebode, Catherine Quinn, Sahdia Parveen, Claire Hulme, Kaarin Anstey, Rachael Litherland, Jeffrey Fox, & Julia Burton. This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South-West Peninsula. The views expressed in this publication are those of the authors and not necessarily those of the NIHR, the Department of Health and Social Care, or the National Health Service. The support of NIHR is gratefully acknowledged. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes No additional data are available.

Introduction People living alone with neurodegenerative conditions face unique difficulties in maintaining independence and accessing appropriate health and social care support. Consolidating current understanding regarding these unique difficulties would better inform health and social care services and enable more tailored and appropriate service delivery. The proposed scoping review will summarise evidence from studies that provide evidence about people with dementia, Parkinson’s disease, Huntington’s disease or motor neurone disease who live alone. This protocol sets out the processes that will be followed in the subsequent scoping review to ensure that a transparent, rigorous and reproducible approach is used to identify, select and synthesise relevant evidence.Methods and analysis This scoping review protocol uses well-established methodology outlined by the Preferred Reporting Items for Systematic review and Meta-Analysis and the Joanna Briggs Institute. Relevant publications will be searched using PubMed, Web of Science Core Collection, CINAHL and AgeLine via EBSCOhost and EMBASE, PsycInfo and Social Policy and Practice via Ovid. Grey literature will be searched via Google looking specifically for pdf documents. As there was no previous review on the topic, no date restrictions will be applied to the searches. Piloting of the search strategy provided an estimate of the number of titles likely to require title and abstract screening, which, along with prior experience from a similar review approach, informed the feasibility of the proposed strategy. For research publications, a two-stage screening approach will be undertaken. The first stage will involve screening titles and abstracts for relevant literature on people with neurodegenerative conditions living alone in the community. The second stage will involve full text screening of selected articles. For grey literature, the first 20 PDFs per website identified in Google will be downloaded and screened. Summary data will be extracted from publications selected for inclusion. Data synthesis will involve tabulating study characteristics and findings and preparing narrative summaries to identify commonalities, gaps and areas for future research.Ethics and dissemination Ethical approval is not required for this review, as the information included is in the public domain and people with lived experience are consultees rather than research participants. Consultation with people with lived experience, stakeholders and experts linked with the National Institute for Health and Care Research Policy Research Unit in Dementia and Neurodegeneration University of Exeter will help to ensure the relevance and applicability of findings. Dissemination will include a policy report and peer-reviewed publications aimed at informing policy, practice and improving support services for people living alone with neurodegenerative conditions.

BackgroundThere is a gap between the principles of person-centred dementia care and their actual implementation. However, scoping reviews of the barriers and facilitators to implementing person-centred dementia care in long-term care facilities for Western countries and Asian countries are lacking.ObjectiveTo identify and compare the barriers and facilitators to implementing person-centred dementia care in long-term care facilities between Western and Asian countries.MethodsIn line with Arksey and O’Malley’s methodology, a scoping review was conducted and is reported following PRISMA-ScR guidelines. Nine English language databases and three Chinese databases were searched to identify qualitative and quantitative research studies published in English and Chinese. Thematic analysis was used to summarise and characterize the barriers and facilitators to implementing person-centred dementia care in long-term care facilities for Western and Asian countries.ResultsThirty-three studies were included. Over half were conducted in Western countries (n =20). Barriers and facilitators were grouped under four high level themes: Nursing and care staff factors, people living with dementia and family factors, organizational factors, and resource factors. Inadequate knowledge of person-centred care, staffing shortages, time constraints, and low wages were the principal barriers to implementing person-centred dementia care in both Western and Asian countries.ConclusionsThe findings indicate that staff encounter numerous obstacles and needs in implementing person-centred care for people living with dementia in long-term care settings. Educational levels of nursing staff in Western countries were generally higher compared to Asian countries. Additionally, work-related injuries and stigma associated with dementia care presented unique challenges for nursing staff in Asia and were not cited in Western studies. Conversely, family-related factors were more frequently and elaborately cited as influencing person-centred dementia care in Western long-term care facilities. Moreover, Asian studies identified a significant lack of educational training support for person-centred dementia care, as well as shortages in staffing and poor availability of personalized, home-like environments

Research suggests that the quality of care provided by family members may be influenced by the quality of relationship they have with the person living with dementia. The study investigated this in the context of assisting with daily activities. The quality of the relationship was assessed using the conceptual framework of relationship continuity/discontinuity which focuses on whether the carer experiences their relationship as continuous or discontinuous with the pre-dementia relationship. Thirty spousal carers completed the Birmingham Relationship Continuity Measure . Participants were also interviewed about how they provide care for their partner’s daily activities. Passages consistent with a more person-centered approach were identified, and the total number of these in each transcript was used as the measure of care quality. There was a significant correlation between questionnaire scores and the number of person-centered passages: Those reporting greater continuity more frequently described using a person-centered approach. Findings were consistent with earlier research suggesting associations between the quality of the relationship and the quality of care. The concept of relationship continuity suggests ways in which relationship and care quality are connected, and these suggestions could be used to develop interventions to help family carers provide better care.

Care provided by family members is not always consistent with the principles of person-centred dementia care (PCDC) and interventions to improve the quality of care are needed. A good foundation for the development of such interventions is provided by an understanding of how good and poor care practices are manifested in everyday care, and of the challenges to providing good quality care. Thirty people providing care to a spouse or partner with dementia were interviewed, and asked to describe examples of the care they provided for activities of daily living and the challenges to providing good quality care. Framework analysis was used to guide and interpret the interviews. Interpretation was guided by the VIPS conceptualisation of PCDC which incorporates the principles of Valuing, Individual, Perspective, and Social. The quality of care varied, and examples of good and poor care practices are described. The principles of PCDC were sometimes in conflict with one another and with other considerations, such as personal safety and the wellbeing of the carer. Participants were often faced with challenging decisions in which they had to weigh up these different issues. To be credible, guidance for carers need to reflect the complexity of the issues they face.

Living alone with a neurodegenerative condition such as dementia may result in inequalities in access to support and resources. However, estimates of the number of people living alone vary widely in research studies. We aimed to estimate the prevalence of living alone with dementia, Parkinson’s disease, motor neurone disease (MND), and Huntington’s disease in England using electronic healthcare records. Individuals identified in the Clinical Practice Research Datalink (CPRD) database were categorised as living alone or living with others based on medical codes and the number of people registered at a given GP practice from a household. Excluding those in care facilities, the prevalence of living alone was estimated both overall and stratified by measures of inequality including age, sex, ethnicity, deprivation, urban/rural location, and region. Prevalence estimates of the population living alone, applied to age and sex structures of upper local authority areas, were mapped. Change in prevalence over 15 years was investigated using Joinpoint analysis. In 2023, there were 205,507 people with dementia in the CPRD database, 40,244 with Parkinson’s disease, 3515 with MND and 1672 with Huntington’s disease. Of those with dementia, 40

OBJECTIVE:This scoping review aims to identify interventions aiming to improve awareness of and reduce stigma related to neurodegenerative conditions within South Asian and Black (African-Caribbean, African, African American, Black British) communities with a focus on synthesising the methods employed for culturally tailoring interventions. INTRODUCTION:Minority ethnic communities affected by neurodegenerative conditions often face health and social care disparities. This can lead to delayed diagnosis and poor health outcomes. Interventions that provide relevant, accessible information about neurodegenerative conditions may help reduce disparities in care access. There is limited knowledge about the methods used to culturally tailor interventions for minority ethnic communities and their efficacy. INCLUSION CRITERIA:Eligible sources will include interventions specifically tailored for South Asian and Black communities, living with dementia, Parkinson's disease, Huntington's disease, or motor neurone disease. Interventions must be conducted in countries that are member states of the Organisation for Economic Co-operation and Development where these two groups constitute minority populations and are likely to face inequalities in care access. METHODS:A scoping review guided by the Joanna Briggs Institute Manual for Evidence Synthesis will be conducted. Searches of Medline (EBSCO), APA PsycInfo (EBSCO), and EMBASE (Elsevier) will be conducted. Study selection will be based on 100% agreement between two reviewers. Data will be extracted, charted, and summarised narratively followed by consultation with stakeholders. IMPLICATIONS:This review will identify culturally sensitive strategies for raising awareness and reducing the stigma associated with neurodegenerative conditions among South Asian and Black communities within the Organisation for Economic Co-operation and Development countries. By utilising these inclusive approaches, communities may feel more empowered to seek a diagnosis for symptoms and live better with the condition. The findings of this review will be shared with the public and policymakers to promote awareness and evidence-based policy making.

CareCoach seeks to enhance self-efficacy in family caregivers of people living with dementia and has been feasibility tested in a multicentre randomised controlled trial. The intervention offers two face-to-face sessions with a trained coach and access to an online platform with nine modules. This paper reports findings from an embedded qualitative process evaluation assessing implementation from the implementer’s (‘coach’s’) (n = 8) perspective using individual interviews and implementer group discussions. Qualitative data were transcribed verbatim, inductively coded and analysed using Normalisation Process Theory. Implementers demonstrated (1) ‘Coherence’ by seeking to understand how CareCoach compared to current practice, highlighting the importance of supporting coaches to differentiate and identify boundaries between their new ‘coach role’ and usual practice; (2) ‘Cognitive Participation’ by reviewing training and resources to understand their role own responsibilities and facilitate delivery of coaching sessions; group supervision and peer support were also emphasised; (3) ‘Collective Action’ through interactions with carers to deliver key behavioural aspects such as goal setting, problem solving, and providing feedback; and (4) ‘Reflexive Monitoring’ by appraising the intervention to gain useful insights that could facilitate refinement of CareCoach training and delivery. This study provides a theoretically informed understanding of the implementation of CareCoach for caregivers of people living with dementia and provides recommendations to enhance training for coaches, intervention delivery and carer engagement.

BackgroundSocial care is vital to quality of life for people with young onset dementia and their families. Yet care is hugely variable, frequently lacking and poorly coordinated. We aim to establish current practice in English social care for people with young onset dementia and co-produce evidence-based recommendations and resources for improvement.Methods and analysisIn Work-Package 1, we will gather qualitative data from 25 people with young onset dementia and/or main supporters residing in England. We will ask them about their experiences of social care (broadly defined, including independent and voluntary sector provision) and suggestions for improvement. In Work-Package 2, we will conduct a short on-line survey with a wide range of staff with a role in adult social care in England. We will find out about current awareness, knowledge and practice and suggestions for improvements. Quantitative and qualitative analysis will provide a picture of current practice. In Work-Package 3, we will use convergence analysis to synthesise the findings from Work-Packages 1 and 2 and present the findings to a stakeholder workshop, to identify feasible priorities for improvement. We will establish what is already known about good practice relating to these key priorities using a scoping review and interviews with professionals. This knowledge will then feed into the co-production of resources and recommendations with key stakeholders to improve social care for people with young onset dementia and their families.DiscussionThis study seeks to address a gap in our understanding of social care provision for people with young onset dementia and develop recommendations and practical resources for improvements. The findings will help people with young onset dementia and supporters to receive higher quality social care.Trial registrationStudy registration number: ISRCTN10653250.

BackgroundAround 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. ObjectiveThis study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. MethodsAccelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. ResultsSixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB’s offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. ConclusionsAEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. Trial RegistrationISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555

Research concerning the reciprocal influence of relationships and dementia largely focuses on dyadic relationships despite evidence that whole families are affected. Furthermore, such research generally considers more common forms of dementia such as Alzheimer's disease. Behavioural variant fronto-temporal dementia (bvFTD) primarily although not exclusively affects people below the age of 65 and is distinctly different in its impact from more common forms of dementia, affecting social cognition and therefore relational functioning. We aimed to develop a detailed understanding of intergenerational family experiences of bvFTD over time. We adopted a social constructivist and pluralist approach, using Narrative Thematic Analysis and Grounded Theory. We interviewed seven families in their own homes, including the person with bvFTD, at up to three time-points every six to nine months from 2012 to 2014, resulting in 46 interviews with 19 family members. Three super-ordinate themes were identified: Theme 1: We before bvFTD: cohesive and connected - disconnected and distant; Theme 2: Challenges experienced by us; and Theme 3: Relational outcomes: a changing we - an entrenched we. Results emphasise bvFTD brought early and significant disruption to family relationships. The interplay of prior relational functioning, involving the nature of the relationship for family members, the specific impact of bvFTD on these relationships and family member's understanding of bvFTD was critical to how each family fared over the duration of the research, and the relational outcomes they experienced. These findings suggest health-care practice could enhance its support for families living with bvFTD, through the development of tailored, family-oriented approaches to assessment and practice. Such approaches are necessary to understand how families work together and identify interventions that address the family-specific challenges bvFTD brings. The provision of tailored, relational-focused and specialised information concerning the experience of living with bvFTD is needed to flexibly address families' needs and expectations.

OBJECTIVES:A modified e-Delphi was used to explore subject-expert consensus to create a minimum & gold standard assessment for young-onset dementia (YOD) for clinicians based in Australia. METHODS:A list of 72 statements adapted from an international study, O'Malley et al. 2020, was included in an online survey that was distributed to clinical experts in the field. Respondents were asked to rate statements on a Likert scale of 1-7 (ranging from '1' being 'not at all important' to '7' being 'absolutely essential'). The mean and standard deviation (SD) were calculated for each statement. Full consensus, designated as 'minimum standard' was defined as 100% of respondents rating statement(s) as 'absolutely essential' (7) or 'very important' (6), while high consensus, designated as 'gold standard' was defined as 80% (16 out of 20) of respondents rating statement(s) as either 'absolutely essential' or 'very important' in the assessment for YOD. The statements that had overall mean scores below 6 did not reach consensus. RESULTS:Full consensus was achieved on 13 statements ('minimum standard'), 80% consensus was reached on 37 statements ('gold standard'), and no consensus was reached on 35 statements. Most clinicians agreed that the diagnosis of YOD is largely based on history, with less emphasis placed on aspects of the examination and investigations conducted. History of first-degree family members with YOD and any past psychiatric symptoms were reported to be potential triggers for a YOD diagnosis. There was agreement that the routine dementia blood screen and baseline structural imaging should be a part of the diagnostic assessment criteria of YOD. Comparisons were made between the results of this Australian-based study to the original international study, which found that 55/72 statements (76%) were similarly rated. CONCLUSIONS:Based on the results of this modified e-Delphi study, full and high consensus was reached on 37 statements which were comparable to results in an international study. This suggests that in general, clinicians in Australia have agreement with international experts about what is important for the assessment and diagnosis of YOD. Because the statements used in the international study were used in this Australian study, consideration of what issues may be specific to the Australian context such as YOD in Aboriginal Australians and rurality may have not been ascertained. In spite of this, these results may be useful to aid clinicians in their assessment for YOD but consensus statements may change over time as development in knowledge and available tests increases.

OBJECTIVES To review evidence about the effectiveness of educational programmes in promoting the delivery of person-centered care by staff in dementia services. METHODS Several databases were searched, and the methodological quality of identified studies systematically evaluated. A summary mean effect size was calculated for several types of outcome (direct knowledge, applied knowledge, attitudes, self-reported and observed working practices). RESULTS Eighteen studies were identified. Results were mixed, with findings of no change, significant improvement, and (in attitude) significant deterioration. Effect size was modest for direct knowledge (standardized mean difference = 0.6), but small or negligible for applied knowledge (0.29) and self-reported (0.06) and observed (0.25) working practices. There was a negative effect for attitudes (-0.17). CONCLUSIONS The quality of evidence was poor. Apart from attitudes, the effect sizes are likely to be overestimates. There was little evidence that education programmes can reliably produce substantial improvements in working practices. CLINICAL IMPLICATIONS Education alone is unlikely to be sufficient for establishing high standards of person-centered care in services. It needs to be supplemented by steps to ensure that staff develop skills in delivering such care in practice, and by organizational support to ensure staff have sufficient motivation, cues and opportunities for implementation.

Objectives:We aimed to understand the facilitators to developing and sustaining high-quality services for people with young onset dementia (YOD) and their families/supporters.Design:This qualitative study used semi-structured interviews with commissioners and service managers, analyzed using inductive thematic analysis.Setting:A purposive sample of providers was selected from diverse areas and contrasting YOD services.Participants:Eighteen senior staff from YOD services and two dementia service commissioners took part.Measurements:For commissioners, key interview topics were experiences of commissioning YOD services, perceived facilitators or barriers, and how future guidance should be structured for ease of use. For service providers, key topics explored experiences of delivering YOD services; what was achievable or challenging; how the service was funded; how it linked with broader provision for YOD in the area; and how guidance should be structured.Results:Recorded interviews lasted 30-40 minutes. Seven key facilitators to the development and sustaining of YOD services were identified: having knowledgeable, committed local champions; involvement of people living with YOD and family supporters; initial delivery within existing resources; partnership working within and between sectors; having a reflective, supportive organizational culture; gathering evidence of impact; and having wider support and guidance.Conclusions:Improvements in provision for those with YOD and their families need to be built on understanding of service-level and interpersonal influences as well as on understanding of YOD itself. Our findings highlight a set of facilitators which need to be in place to establish and sustain high-quality YOD services that fit the local context.

Evidence-based rehabilitative interventions, if widely implemented, could equip people with dementia and their families to manage life with the condition and reduce the need for health and care services. The aim of this translational study, building on evidence from the GREAT randomised controlled trial, was to develop a foundation for implementing the GREAT Cognitive Rehabilitation intervention in community-based services for people with mild-to-moderate dementia. Key elements of the implementation strategy were identifying and supporting managerial and clinical leadership, conducting collaborative planning and target-setting, training and supporting practitioners, and providing external facilitation. We developed implementation plans with, and trained staff in, 14 organisations. We subsequently worked closely with 11 of these, 10 National Health Service organisations and one private home care provider, to support practitioners to deliver GREAT Cognitive Rehabilitation over a 12-month period. Outcome evaluation examined the perspectives of local steering group members, practitioners and service users, and the reach, effectiveness and cost of the intervention. Implementation was disrupted by the COVID-19 pandemic, but six organisations completed at least six months of intervention delivery. Forty-one practitioners, mainly occupational therapists, provided the intervention, and 54 people with dementia completed a course of GREAT Cognitive Rehabilitation. Goal attainment by people with dementia exceeded levels of improvement seen in the original trial. People with dementia, carers, practitioners and steering group members all evaluated the intervention positively, and economic analysis indicated that the intervention could be provided at modest cost. However, we identified a range of mainly organisational barriers that impeded implementation and limited the potential for sustainability. GREAT Cognitive Rehabilitation benefits people with dementia, can be delivered effectively at modest cost in routine services, and is viewed positively by people with dementia, family carers and practitioners. To fully realise these benefits and achieve widespread and sustainable implementation, however, requires sufficient resources and a reorientation of service priorities towards preventive and rehabilitative approaches. National Institute for Health Research (NIHR) Central Portfolio Management System, registration number 38994.

Background: Across the developed West, a significant proportion of older people die in hospital It has been argued that an acute hospital setting is not well equipped to support dying well. A palliative approach, which involves recognising and alleviating suffering, might lead to improved quality of care. Yet suffering is an intangible and contested phenomenon and little is known about people’s actual experiences of suffering in this clinical setting. Aim: To examine the context of end-of-life care for older people in an acute hospital setting, particularly focusing on the experience of suffering. Design: An observational study, using an ethnographic approach. Data analysis was inductive and iterative. Reflexive analysis included observations and inferences from a participant-observer perspective. Over a period of 3 months in 2016, 186 h of observations of clinical care were carried out. Settings/participants: The study was carried out on a 30-bedded acute older peoples’ hospital ward in the United Kingdom. Participants included 11 patients and 33 members of staff and visitors. Results: Patient suffering was influenced by a range of factors. Delays in recognising and acknowledging dying often led to treatments that were burdensome or futile, exacerbating patient suffering. This was frequently associated with clinical decision-making that did not take into consideration long term concerns such as prognosis or quality of life. Environmental factors in the physical clinical setting such as noise and smell also exacerbated suffering. Finally, aspects of interpersonal interactions, such as paternalistic attitudes or ineffective communication, affected patient experience. Conclusion: Acute care for older people in hospital was shaped by an overarching ideology of rescue which predicted and dictated the process of care. Suffering was not restricted to the direct experiences of life-limiting illness but was also associated with the experience of receiving care in an acute hospital setting. Avoiding or minimising iatrogenic suffering is an essential component of compassionate care.

Evidence on post-diagnostic support for people with young onset dementia is scarce. Previous studies have employed a problem-focused approach; however, evidence on 'what works' in real-life practice is essential to develop recommendations for service design and delivery. This study aimed to provide insight into 'what works' from the perspectives of people with young onset dementia and their supporters. We gathered free-text responses on positive service experiences via a UK cross-sectional survey. Inductive thematic analysis was used to identify the objectives of positive services and the needs these met. Follow-up interviews enabled in-depth insights from people with diverse diagnoses, ages and social situations. These were analysed using a template drawn from the survey. The 233 survey respondents gave 856 examples of positive support. Analysis of 24 follow-up interviews led to 16 themes clustered under three superordinate themes: 'maintaining autonomy', 'being myself' and 'togetherness'. We found that positive services address the disruptions to sense of agency, selfhood and meaningful relationships that are experienced by those with young onset dementia. The study provides an in-depth understanding of the needs met by positive services for younger people with dementia. Our nuanced findings on good practice can inform age-specific guidelines for young onset dementia and indicate how personalisation can work in practice to help people with young onset dementia to maintain identity, autonomy and connections.

Abstract As the ageing population in China continues to grow, more people will be living with long-term health conditions and require support from family care-givers. This scoping review therefore aims to explore sources of stress and coping mechanisms adopted by care-givers of older relatives living with long-term conditions in mainland China. Literature searches were conducted in English (CINAHL, EMBASE, MEDLINE, PsycINFO and SCOPUS) and Chinese (CNKI, WANFANG DATA, CQVIP and CBM) databases between October and November 2019. The searches focused on the stressors and coping mechanisms utilised by family care-givers residing in the community. Narrative synthesis was used to identify themes within the data. Forty-six papers were included: 20 papers from English and 26 from Chinese databases. Six themes captured stressors: care-giving time (N = 22), financial resources (N = 17), role and personal strains (N = 42), preparedness (N = 4), social roles (N = 10) and lack of adequate formal support (N = 22); and one theme captured coping (N = 14). Unmet needs of care-givers of older relatives in mainland China were found to be extensive. Only a few studies had attempted to explore the causal link between stressors, coping and the influence of culture. Findings underscore the significance of adequately capturing intricacies around care-givers’ unmet needs, rather than generalising on the basis of culture. Qualitative studies are critical to providing a better understanding of the relationship between stressors, coping and resources afforded to care-givers by their cultural environment. Having such understanding is crucial to inform the development of competent care, which promotes self-efficacy and self-actualisation in care-givers in mainland China.