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Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar.Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support.Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention.Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts. [ABSTRACT FROM AUTHOR]

The UK has many excellent care homes that provide high-quality care for their residents; however, across the care home sector, there is a significant need for improvement. Even though the majority of care homes receive a rating of 'good' from regulators, still significant numbers are identified as requiring 'improvement' or are 'inadequate'. Such findings resonate with the public perceptions of long-term care as a negative choice, to be avoided wherever possible--as well as impacting on the career choices of health and social care students. Projections of current demographics highlight that, within 10 years, the part of our population that will be growing the fastest will be those people older than 80 years old with the suggestion that spending on long-term care provision needs to rise from 0.6% of our Gross Domestic Product in 2002 to 0.96% by 2031. Teaching/research-based care homes have been developed in the USA, Canada, Norway, the Netherlands and Australia in response to scandals about care, and the shortage of trained geriatric healthcare staff. There is increasing evidence that such facilities help to reduce inappropriate hospital admissions, increase staff competency and bring increased enthusiasm about working in care homes and improve the quality of care. Is this something that the UK should think of developing? This commentary details the core goals of a Care Home Innovation Centre for training and research as a radical vision to change the culture and image of care homes, and help address this huge public health issue we face. [ABSTRACT FROM AUTHOR]

Background: The global population is changing with an increasing percentage of the oldest old, many of whom in the UK are looked after in care homes. Care homes now provide care for a fifth of the UK population who die each year. However, most nursing care homes are privately owned and not part of the NHS, which exposes staff to a lack of skills/knowledge in relation to end-of-life care. Methods: To implement the Gold Standards Framework in Care Homes Programme and audit outcomes within nursing care homes across five Clinical Commissioning Groups over a 7-year period using a research-based model of facilitation. Results: The percentage of residents dying in nursing care homes increased from 57% to 79%, with improvement in other outcomes. Conclusions: A 'high' facilitation model, including a sustainability initiative and ongoing audit, contributed to significant improvements when implementing the Programme. Reciprocity and trustworthiness underpin the success of this initiative. [ABSTRACT FROM AUTHOR]

Objective The objective of the study was to evaluate the effects of the Namaste Care programme on the behavioural symptoms of residents with advanced dementia in care homes and their pain management. Methods Six dementia care homes collaborated in an action research study-one withdrew. Inclusion criteria were a dementia diagnosis and a Bedford Alzheimer's Nursing Severity Scale score of >16. Primary research measures were the Neuropsychiatric Inventory-Nursing Homes (NPI-NH) and Doloplus-2 behavioural pain assessment scale for the elderly. Measures were recorded at baseline and at three 1-2 monthly intervals after Namaste Care started. Results Management disruption occurred across all care homes. The severity of behavioural symptoms, pain and occupational disruptiveness (NPI-NH) decreased in four care homes. Increased severity of behavioural symptoms in one care home was probably related to poor pain management, reflected in increased pain scores, and disrupted leadership. Comparison of NPI-NH scores showed that severity of behavioural symptoms and occupational disruptiveness were significantly lower after initiation of Namaste Care ( n = 34, p < 0.001) and after the second interval ( n = 32, p < 0.001 and p = 0.003). However, comparison of these measures in the second and third intervals revealed that both were slightly increased in the third interval ( n = 24, p < 0.001 and p = 0.001). Conclusions Where there are strong leadership, adequate staffing, and good nursing and medical care, the Namaste Care programme can improve quality of life for people with advanced dementia in care homes by decreasing behavioural symptoms. Namaste is not a substitute for good clinical care Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives: to identify the care currently provided to residents dying in UK nursing care homes.Method: study participants were residents who had died within 38 nursing care homes in southeast England over a 3-year period. The nursing care homes had been recruited to take part in a cluster randomised controlled trial looking at different models of facilitation while implementing the Gold Standards Framework in Care Homes (GSFCH) programme. Two researchers examined the notes and daily records of all residents who died in each of these homes between the 1 June 2008 and the 31 May 2011.Results: a total of 2,444 residents died during the 3-year period. Fifty-six percent of these residents died within a year of admission. The support from specialist healthcare services to residents during their last 6 months of life was variable.Conclusions: nursing care homes have established links with some external healthcare providers. These links included the GP, palliative care nurses and physiotherapy. As dependency of resident increase with 56% residents dying within a year of admission these links need to be expanded. The provision of health care that meets the needs of future nursing care home residents needs to be ‘proactively’ obtained rather than left to chance. [ABSTRACT FROM AUTHOR]

Objectives: to identify the care currently provided to residents dying in UK nursing care homes.Method: study participants were residents who had died within 38 nursing care homes in southeast England over a 3-year period. The nursing care homes had been recruited to take part in a cluster randomised controlled trial looking at different models of facilitation while implementing the Gold Standards Framework in Care Homes (GSFCH) programme. Two researchers examined the notes and daily records of all residents who died in each of these homes between the 1 June 2008 and the 31 May 2011.Results: a total of 2,444 residents died during the 3-year period. Fifty-six percent of these residents died within a year of admission. The support from specialist healthcare services to residents during their last 6 months of life was variable.Conclusions: nursing care homes have established links with some external healthcare providers. These links included the GP, palliative care nurses and physiotherapy. As dependency of resident increase with 56% residents dying within a year of admission these links need to be expanded. The provision of health care that meets the needs of future nursing care home residents needs to be ‘proactively’ obtained rather than left to chance. [ABSTRACT FROM AUTHOR]

Background care homes collect extensive data about their residents, and their care, in multiple ways, for multiple purposes. We aimed to (i) identify what data are routinely collected and (ii) collate care home managers' views and experiences of collecting, using and sharing data. Methods we examined data collected in six care homes across Lothian, Scotland. We extracted the meta-data, cross-referenced definitions and assessed the degree of harmonisation between care homes and with data sets currently in use in Scotland and internationally. We interviewed care home managers about their views and experiences of collecting, using and sharing data. Results we identified 15 core data items used routinely, with significant heterogeneity in tools and assessments used, and very limited harmonisation. Two overarching themes were identified of importance to the development of a care home data platform: (i) the rationale for collecting data, including to (a) support person-centred care, (b) share information, (c) manage workforce and budget and (d) provide evidence to statutory bodies and (ii) the reality of collecting data, including data accuracy, and understanding data in context. Discussion considerable information is collected by care home staff, in varied formats, with heterogeneity of scope and definition, for range of reasons. We discuss the issues that should be considered to ensure that individual resident-level form the strong foundations for any data platform for care homes, which must also include, robust infrastructure and clear interoperability, with appropriate governance. It must be co-produced by academics, policy makers and sector representatives, with residents, their families and care staff. [ABSTRACT FROM AUTHOR]

Background: Action research is beginning to be utilized within palliative care research to address questions concerned with practice and organizational change. An understanding of appropriate evaluation practices is required in order to ensure that high-quality action research is conducted.Aim: The aim of this paper is to present an account of participatory action research and illustrate the way in which evaluation approaches are integrated within this methodology.Design: Participatory action research will be described identifying its origins, principles and its relationship with evaluation frameworks. The key features of the evaluation process in regard to participatory research are outlined.Setting: Two studies are presented which illustrate the integration of evaluation within a participatory action research framework. The first approach uses a before–after summative evaluation approach in a study undertaken to develop palliative care practice within a UK nursing home context. The evaluation focused upon the impact of the intervention. The second study utilized similar methods and addressed the process of the action research using the Äldreväst Sjuhärad (ÄVS) model to evaluate participation in a peer education programme for advance care planning amongst older adults.Results: These examples of evaluation within action research illustrate how diverse methods can be used. The use of a specific participatory evaluation model ensures the process reflects the underlying participatory principle of action research.Conclusions: Evaluation processes are integral to action research approaches. The specific evaluative methods adopted will reflect the nature and focus of the evaluation being undertaken. [ABSTRACT FROM PUBLISHER]

Abstract: In many Western countries, older people live and die in long-term institutional care settings. Habermas''s concepts of lifeworld, system and communicative action are drawn upon to illuminate the experience of living and dying in this particular place. It is proposed that dying older adults, their family and care staff occupy different contested states and long term care settings are contested places, located in a wider system. This wider system, mediated through care homes, can colonise the life world experiences of dying individuals. The development of communicative space bridges the lifeworld and system and offers a way for the lifeworld of dying individuals, and those around them to be reintegrated into, and influence the wider system. [Copyright &y& Elsevier]

Aim: Increasing numbers of older people are dying in the nursing care home setting. Little is known about the medication needs of the very old and frail in the last weeks of life and how they might differ from a model of care developed for people dying from cancer. Method: A baseline review of medication in the last month of life was undertaken to try and establish current practice of prescribing for this population. The notes of 48 deceased residents in seven nursing care homes were examined, alongside a questionnaire sent to 67 trained nurses. Results: Subcutaneous prescribing only occurred where specialist palliative care teams had been involved with the residents' care. Syringe drivers were used in 23% of cases; however, only three residents required a syringe driver for more than a day and a half. Nurses' confidence and competence in setting up syringe drivers was varied. Conclusions: The use of syringe drivers may not be the most appropriate way of managing symptoms during the dying phase in very frail and old people. [ABSTRACT FROM AUTHOR]

The author references a linked paper by LV Pocock and colleagues which provides a valuable snapshot of where deaths occur in Great Britain for the oldest old and findings that majority of the oldest old die in hospital. It cites the lessons that can be derived from their study such as diagnosing that the end of life is approaching, the need for sufficient resources and expertise to be available in the community and the need for more conversations about death and dying.

Action research in health care is a relatively new research approach, which is adopted when one aim of the research is to bring about change in practice and to research the process of that change. This paper describes the way action research, as a research methodology, can be used to develop palliative care knowledge in generalist care settings. An overview of action research is presented and its relationship to more conventional research paradigms. Two action research projects, undertaken to develop knowledge about end-of-life care for older people in care homes, are used to illustrate the key principles of action research, methods of data collection and data analysis. Finally, the challenges of such, utilising an action research approach and its strengths, are discussed. [ABSTRACT FROM AUTHOR]

Aim:This paper explores the barriers that needed to be overcome during the process of implementing an integrated care pathway for the last days of life as a way of developing quality end-of-life care in nursing homes. Methods: An action research methodology underpinned the study. Qualitative and quantitative data were collected in eight nursing homes before, during and after the implementation of the care pathway. Findings: Six main barriers were identified: a lack of knowledge of palliative care drugs and control of symptoms at the end of life; lack of preparation for approaching death; not knowing when someone is dying or understanding the dying process; lack of multidisciplinary team working in nursing homes; lack of confidence in communicating about dying; some nursing homes are not ready or able to change. These findings highlight a functional `rehabilitative' culture that may not be so appropriate in the current context of nursing home care, and one that makes implementing an integrated care pathway for the last days of life less straightforward than in other settings. Conclusion: It cannot be presumed that the implementation of a care pathway for the last days of life in nursing homes is straightforward. This study suggests that an action research framework was extremely useful in highlighting and overcoming some obstacles when developing evidence-based practice. Action at both local and public policy level is required to fully address barriers that prevent quality end-of-life care in nursing homes. [ABSTRACT FROM AUTHOR]

The dynamics surrounding the patient and family facing a death as the 'unit of care' is discussed. Aspects of communication, openness within the family, especially concerning children and teenagers, and factors that enable a family to function under the stress of a loved one's terminal illness are explored. The use of a genogram in palliative care to help to piece together the family dynamics and available support is fundamental to the care for the whole family. [ABSTRACT FROM AUTHOR]

Patient and public involvement and engagement (PPIE) is an increasingly important component of research conduct to enhance processes and potential for impact, yet is rarely critically interrogated. This paper draws on Foucauldian analysis to highlight the disciplinary powers and tensions arising in PPIE. The paper draws on a nested evaluation interview study with three PPIE members and eight academics, who had been involved in an implementation science study focused on palliative care. PPIE members were involved in the whole study and are co‐authors of this article. Through shared values and commitments to the study, a team culture of equality was developed. Yet while power was dispersed and taken‐up by all team members, in so doing a self‐governance approach within the team was developed. The pace and focus of discussions was at times more subjugating than co‐production. Identities and positions were porous; the simplistic division of ‘academic’ and ‘PPIE’ did not stand up to scrutiny, with an increasing blurring of boundaries as people’s experiences and insights changed over time. Continual, subtle, negotiations of roles, inputs and identities were manifest throughout the project. PPIE in research involves subtle, complex and ongoing disciplinary practices enacted by all members of the team. [ABSTRACT FROM AUTHOR]

The hospital-based specialist palliative care service is the latest extension of the hospice movement in the UK, bringing the message of specialist palliative care back into the hospital setting. There are now over 200 palliative care services within the acute setting, including 76 specialist palliative care teams. The composition, advantages and disadvantages of such teams are described, and the challenge and importance of evaluating these services are discussed. [ABSTRACT FROM AUTHOR]

Background Care home residents are increasingly frail with complex health and social care needs. Their transfer to hospital at the end-of-life can be associated with unwanted interventions and distress. However, hospitals do enable provision of care that some residents wish to receive. We aimed to explore the factors that influence hospital admission of care home residents who then died in hospital. Methods This study combined in-depth case note review of care home residents dying in two Scottish teaching hospitals during a 6-month period and semi-structured interviews with a purposive sample of 26 care home staff and two relatives. Results During the 6-month period, 109 care home residents died in hospital. Most admissions occurred out-of-hours (69%) and most were due to a sudden event or acute change in clinical condition (72%). Length of stay in hospital before death was short, with 42% of deaths occurring within 3 days. Anticipatory Care Planning (ACP) regarding hospital admission was documented in 44%. Care home staff wanted to care for residents who were dying; however, uncertain trajectories of decline, acute events, challenges of ACP, relationship with family and lack of external support impeded this. Conclusions Managing acute changes on the background of uncertain trajectories is challenging in care homes. Enhanced support is required to improve and embed ACP in care homes and to provide rapid, 24 hours-a-day support to manage difficult symptoms and acute changes. [ABSTRACT FROM AUTHOR]

Presents the obituary for Dame Cicely Saunders, founder of the modern hospice movement.

Editorial. Presents the author's opinions about palliative care, as a specialty, and its roots in the evolution of the hospice movement. The need for courses to help people acquire greater skills in the care of dying patients and their families; The application of the terms 'specialist' and 'specialization' to palliative care; Questioning of the term 'specialist' as it applies to palliative care.

Background: In the UK, implementation of the Gold Standards Framework in Care Homes (GSFCH) programme is being promoted to develop the quality of end-of-life care for frail older people living and dying in care homes. Advance care planning (ACP) discussions are an integral part of this. This study explored experiences of initiating and completing these discussions in homes undertaking the GSFCH. Methods: A qualitative descriptive study was carried out in three nursing care homes implementing the GSFCH programme. Following an ACP discussion, 28 semi-structured interviews were conducted with the resident, a family member, and the staff member who undertook the ACP. Content analysis was then conducted. Findings: Three main categories of findings emerged: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions. Staff understanding of ACP varied, affecting the depth of their discussions. Documentation was either a useful prompt or limited the discussion, blocking opportunistic cues and encouraging a 'tick-box' exercise. Residents were open to ACP, although the way it was introduced could affect the results. Families were comforted that the resident's future care had been considered. Education was identified as being important, and role modelling ACP enabled a member of staff to develop their skills and confidence in it. Conclusions: Care home staff need to develop the knowledge, skills, and confidence to engage in discussions around end-of-life care. The assistance of a trained facilitator who role-models this process should be explored. [ABSTRACT FROM AUTHOR]

Background: In the UK, implementation of the Gold Standards Framework in Care Homes (GSFCH) programme is being promoted to develop the quality of end-of-life care for frail older people living and dying in care homes. Advance care planning (ACP) discussions are an integral part of this. This study explored experiences of initiating and completing these discussions in homes undertaking the GSFCH. Methods: A qualitative descriptive study was carried out in three nursing care homes implementing the GSFCH programme. Following an ACP discussion, 28 semi-structured interviews were conducted with the resident, a family member, and the staff member who undertook the ACP. Content analysis was then conducted. Findings: Three main categories of findings emerged: understanding ACP, undertaking ACP discussions, and impact of and reactions to ACP discussions. Staff understanding of ACP varied, affecting the depth of their discussions. Documentation was either a useful prompt or limited the discussion, blocking opportunistic cues and encouraging a 'tick-box' exercise. Residents were open to ACP, although the way it was introduced could affect the results. Families were comforted that the resident's future care had been considered. Education was identified as being important, and role modelling ACP enabled a member of staff to develop their skills and confidence in it. Conclusions: Care home staff need to develop the knowledge, skills, and confidence to engage in discussions around end-of-life care. The assistance of a trained facilitator who role-models this process should be explored. [ABSTRACT FROM AUTHOR]

Need-based care is a structured and standardized model that supports formal caregivers in nursing homes in delivering person-centered care by responding with tailored non-pharmacological interventions on residents' unmet needs as well as having positive effects on behavioral and psychological symptoms on residents with dementia. However, limited resources as well as the shortage of caregivers in nursing homes make the implementation of need-based care challenging, especially when it comes to finding ways to spend more time with residents. The aim of this study is to evaluate the impact of the implementation of need-based care in nursing homes on formal caregivers' wellbeing. A three-arm cluster randomized controlled trial was set up in 24 Belgian nursing homes: formal caregivers in the 'need-based care' group (intervention; n = 195) spent time twice a week with residents who had behavioral and psychological symptoms according to the principles of need-based care while formal caregivers in the 'time' group (n = 257) filled in the way they spent time twice a week; a third group delivered standard care (n = 299). An implementation strategy was built upon the Implementation Quality Framework and used in the 'need-based care group'. A total of 741 formal caregivers completed the digital questionnaire at one or more of the five time points (every nine weeks) between November 2021 and July 2022; they rated their sense of competence in dementia care, level of burnout, and, level of engagement. Moments of time were registered in a printed registration book. Only formal caregivers from the 'need-based care' group experienced a higher sense of competence in dementia care at time points three (p = 0.010) and four (p = 0.001) compared with baseline with an increase of respectively 1.5 (95 % confidence interval [0.25, 2.84]) and 2.4 (95 % confidence interval [0.77, 4.04]) points. No differences in scores on burnout and engagement were found. Despite challenging workforce circumstances in nursing homes, caregivers in the need-based care group as well as in the time group were able to spend time twice a week with residents with behavioral and psychological symptoms. No negative effects were found on formal caregivers' wellbeing after the implementation of need-based care in nursing homes. However, it requires strong leadership and the use of well-considered implementation strategies including reflective practice. Trial registration number ISRCTN56768265 (10/08/2023). [ABSTRACT FROM AUTHOR]

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation. Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities. Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines. Data sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation. Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change). Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities. [ABSTRACT FROM AUTHOR]

Background: The PACE 'Steps to Success' programme is a complex educational and development intervention for staff to improve palliative care in long-term care facilities (LTCFs). In a cluster randomized controlled trial, this programme has been implemented in 37 LTCFs in 7 European countries. Alongside an effectiveness study, a process evaluation study was conducted. This paper reports on the results of this process evaluation, of which the aim was to provide a more detailed understanding of the implementation of the PACE Programme across and within countries.Methods: The process evaluation followed the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework and involved various measures and tools, including diaries for country trainers, evaluation questionnaires for care staff, attendance lists and interviews (online and face-to-face, individual and in groups) with country trainers, managers, PACE coordinators and other staff members. Based on key elements of the PACE Programme, a priori criteria for a high, medium and low level of the RE-AIM components Reach, Adoption, Implementation and intention to Maintenance were defined. Qualitative data on factors affecting each RE-AIM component gathered in the online discussion groups and interviews were analysed according to the principles of thematic analysis.Results: The performance of the PACE Programme on the RE-AIM components was highly variable within and across countries, with a high or medium score for in total 28 (out of 37) LTCFs on Reach, for 26 LTCFs on Adoption, for 35 LTCFs on Implementation and for 34 LTCFs on intention to Maintenance. The factors affecting performance on the different RE-AIM components could be classified into three major categories: (1) the PACE Programme itself and its way of delivery, (2) people working with the PACE Programme and (3) contextual factors. Several country-specific challenges in implementing the PACE Programme were identified.Conclusions: The implementation of the PACE Programme was feasible but leaves room for improvement. Our analysis helps to better understand the optimal levels of training and facilitation and provides recommendations to improve implementation in the LTC setting. The results of the process evaluation will be used to further adapt and improve the PACE Programme prior to its further dissemination.Trial Registration: The PACE study was registered at www.isrctn.com-ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) July 30, 2015. [ABSTRACT FROM AUTHOR]

The article presents information on the effect of using high facilitation while implementing the Gold Standards Framework in Care Homes programme in Great Britain. It was hypothesised that implementing the programme will help in reducing hospital deaths for residents. It is concluded that without national guidelines, facilitation of the programme will vary and its implementation.

Background: a large and increasing number of older people in the UK are living in care homes. Dementia is a frequent reason underlying admission and determining care needs, but prevalence data are becoming increasingly outdated and reliant on brief screening instruments.Objective: to describe the prevalence and severity of dementia, depression, behavioural problems and relevant medication use in a representative sample of residential and nursing care home residents.Design/setting: a survey conducted in 15 randomly selected South East London care homes. Consensus clinical dementia diagnoses were made from multi-source information, and the Clinical Dementia Rating (CDR) Scale applied. Depression was ascertained using the Cornell Depression in Dementia Scale and psychological/behavioural problems using the Neuropsychiatric Inventory (NPI).Participants: three hundred and one residents with a mean (SD) age of 83.5 (9.8) and 65.8% female were included.Results: dementia (CDR 1–3) prevalence was 75.1% overall, 55.8% in residential homes, 91.0% in residential elderly mentally infirm care and 77.0% in nursing homes. Depression prevalences were 26.5, 22.0 and 29.6%, respectively, and mean (95% CI) NPI severity scores 3.99 (3.47–4.50), 6.34 (5.29–7.39) and 6.10 (5.50–6.70) with 87.3% of the sample exhibiting at least one NPI symptom. Antidepressants were prescribed in 25.6, 25.0 and 41.3%, respectively, and antipsychotics in 7.0, 34.1 and 19.1%.Conclusion: dementia is substantially more common in care homes than recorded diagnoses would suggest, but studies using brief screening instruments may overestimate prevalence. High prevalences of depressive and/or behavioural symptoms and psychotropic use suggest significant unmet need. [ABSTRACT FROM AUTHOR]

Background: a large and increasing number of older people in the UK are living in care homes. Dementia is a frequent reason underlying admission and determining care needs, but prevalence data are becoming increasingly outdated and reliant on brief screening instruments.Objective: to describe the prevalence and severity of dementia, depression, behavioural problems and relevant medication use in a representative sample of residential and nursing care home residents.Design/setting: a survey conducted in 15 randomly selected South East London care homes. Consensus clinical dementia diagnoses were made from multi-source information, and the Clinical Dementia Rating (CDR) Scale applied. Depression was ascertained using the Cornell Depression in Dementia Scale and psychological/behavioural problems using the Neuropsychiatric Inventory (NPI).Participants: three hundred and one residents with a mean (SD) age of 83.5 (9.8) and 65.8% female were included.Results: dementia (CDR 1–3) prevalence was 75.1% overall, 55.8% in residential homes, 91.0% in residential elderly mentally infirm care and 77.0% in nursing homes. Depression prevalences were 26.5, 22.0 and 29.6%, respectively, and mean (95% CI) NPI severity scores 3.99 (3.47–4.50), 6.34 (5.29–7.39) and 6.10 (5.50–6.70) with 87.3% of the sample exhibiting at least one NPI symptom. Antidepressants were prescribed in 25.6, 25.0 and 41.3%, respectively, and antipsychotics in 7.0, 34.1 and 19.1%.Conclusion: dementia is substantially more common in care homes than recorded diagnoses would suggest, but studies using brief screening instruments may overestimate prevalence. High prevalences of depressive and/or behavioural symptoms and psychotropic use suggest significant unmet need. [ABSTRACT FROM AUTHOR]

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n = 162); followed by four focus groups involving patients, carers and key professionals (n = 32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals. [ABSTRACT FROM AUTHOR]

Background: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the ‘PACE Steps to Success’ palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. Methods: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the ‘Pace Steps to Success intervention’ or to ‘care as usual’. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). Secondary outcomes: resident’s quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. Discussion: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities ‘PACE Steps to Success’ in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. Trial registration: The study is registered at www.isrctn.com – ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015. [ABSTRACT FROM AUTHOR]