A comparison of four dementia palliative care services using the RE-AIM framework.

BACKGROUND: Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned. METHODS: A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services. RESULTS: The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place. CONCLUSIONS: An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.

Identification of eating, drinking and swallowing difficulties for people living with early-stage dementia: A systematic review.

BACKGROUND: The prevalence of dementia is increasing, bringing a range of challenges, such as eating, drinking and swallowing (EDS) difficulties, that are associated with aspiration, which can be fatal. Early identification of EDS difficulty in early-stage dementia could prevent complications, but reliable indicators are needed to help develop pathways to support the diagnosis. Previous reviews of this area require updating. AIMS: To identify reliable and clinically measurable indicators of EDS difficulty used in early-stage dementia. METHODS & PROCEDURES: A systematic search was conducted using common databases (MEDLINE, EMBASE and PsychInfo). Articles reporting indicators of EDS difficulty in early-stage dementia or mild cognitive impairment were included. The reliability of included studies was critically appraised using the risk of bias tools. Study outcomes were narratively reviewed by considering the reliability, clinical measurability and applicability of EDS indicators to early-stage dementia. OUTCOMES & RESULTS: Initial searches returned 2443 articles. After removing duplicates, limiting to English language and human studies, 1589 articles remained. After reviewing titles, 60 abstracts were reviewed, yielding 18 full-text articles. A total of 12 articles were excluded that did not report at least one indicator of EDS difficulty in early-stage dementia, or where the reported association was not strong. Six included studies that reported eight indicators of EDS difficulty in early-stage dementia (four studies including people with Alzheimer's disease). On the balance of measurability, reliability and applicability, the most promising indicators of EDS difficulty were: delayed oral transit, rinsing ability, sarcopenia and polypharmacy. Additional, less reliable and applicable indicators included: always opened lips and non-amnestic mild cognitive impairment, especially in men. The delayed pharyngeal response is subjectively measured when instrumental assessment is not available and the 'candy sucking test' cannot be recommended because there is an inherent choking risk. CONCLUSIONS & IMPLICATIONS: EDS difficulty in early-stage dementia can be highlighted by indicators that could be combined to create enhanced pathways to support the early identification of EDS difficulties for people living with early-stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration. Exploring the experiences of people living with dementia and their families' perspectives on potential indicators of EDS difficulty may add to the existing evidence base. WHAT THIS PAPER ADDS: What is already known on the subject Early identification of EDS difficulty in early-stage dementia may prevent complications, but more reliable and clinically measurable indicators of EDS difficulty are needed to help develop pathways to support diagnosis. What this paper adds to existing knowledge A comprehensive range of studies related to EDS identification in early-stage dementia have been selected and reviewed. Across six included studies, the most promising indicators of EDS difficulty in early-stage dementia included delayed oral transit, poor rinsing ability, presence of sarcopenia and polypharmacy. What are the potential or actual clinical implications of this work? This study could help to develop pathways to support the early identification of EDS difficulties for people living with early-stage dementia with a view to preventing complications and facilitating informed discussions regarding wishes in the event of further deterioration.

Exploring the connection between dementia and eating, drinking and swallowing difficulty: Findings from home-based semi-structured interviews.

BACKGROUND: Eating, drinking and swallowing (EDS) difficulties are important to identify early. Awareness of EDS changes starts with those living with dementia or their family carers. However, little is known about early identification from the perspective of people with dementia. AIM: The aim of this study was to understand the experience of EDS by people living with dementia in their own home. METHODS: Published evidence pertaining to EDS difficulties in dementia was used to inform an online semi-structured interview guide. Four people living with dementia and a third-sector Empowerment Lead were invited to become co-researchers. People living with dementia and their carers were invited to be interviewed. We enquired about their past and present experiences, and future expected changes in EDS, information needs, opinions on early problem identification, and lifestyle modifications following onset of EDS difficulty. Narrative concepts of heroes and villains in their 'stories' were identified. Responses were subjected to framework analysis informed by narrative enquiry. RESULTS: Seven people living with dementia and five family carers were interviewed. The overarching theme was a 'missed connection' between EDS difficulty and dementia. Where EDS difficulties were identified, 'compensatory changes' and a need for 'access to information' were noted. CONCLUSIONS: The connection between potential EDS difficulties and a dementia diagnosis may not be made, even though EDS changes were recognised by people living with dementia and their family carers. This may be explained by behaviours that mask problems or allow individuals to cope or compensate. Reduced awareness may also be due to inadequate access to information and lack of specialist services. If the connection between dementia and EDS difficulty is missed it could further delay access to support services. WHAT THIS PAPER ADDS: What is already known on the subject The prevalence of dementia is increasing and is expected to affect 9% of the population by 2040. EDS difficulties are common in people living with dementia and predispose to poorer outcomes. Better awareness of EDS changes early in the disease process of dementia or at preclinical stages can identify individuals at risk and allow for intervention prior to advanced EDS difficulties developing. What this paper adds to existing knowledge This paper reports the perspective of people living with dementia and family carers and provides insights into experiences of EDS and the challenges faced and identifies commonalities. The connection between potential EDS difficulties and dementia is missed despite various changes reported by both people living with dementia and their family carers, who tend to make compensatory lifestyle changes without support. What are the potential or actual clinical implications of this work? Lack of awareness of the connection between potential EDS difficulties and dementia may arise due to inadequate access to information to support people living with dementia and their family carers. Access to such information is needed and the quality assurance of information from reputable sources is important to people living with dementia. There is a need for greater service user awareness of signs of EDS difficulty and how to access specialist services.

Effectiveness of Telephone-Based Interpersonal Psychotherapy on Antenatal Depressive Symptoms: A Prospective Randomized Controlled Trial in The Kingdom of Jordan.

BACKGROUND: Jordanian pregnant women report high prevalence of antenatal depressive symptoms, compared to their counterparts internationally. One potential nonpharmacological intervention is Interpersonal Psychotherapy (IPT), accessed by telephone. AIM: The aim of this study is to compare the depressive symptom level(s) among Jordanian pregnant women who received IPT treatment with those who received routine antenatal care. METHODS: A prospective randomized controlled trial design was used. Following ethical approval, a sample of 100 pregnant women (50 in each group) at 24 to 37 weeks gestation, was drawn from one governmental public hospital. Seven sessions (each half an hour) of telephone-based IPT were offered twice weekly to those assigned to the intervention arm: one pretherapy orientation, five intermediates, and one closing session. The Edinburgh Postnatal Depression Scale was administered before and after the intervention. Analysis of covariance was used to detect the intervention effect. The two groups were matched based on demographic and health characteristics. RESULTS: Compared to the control group, pregnant women who received the intervention reported fewer depressive symptoms. CONCLUSIONS: Midwives and general nurses should screen all pregnant women for symptoms of depression. The effectiveness of IPT treatment in alleviating depressive symptoms indicates the importance of using such supportive interventions by midwives and general nurses, who are trained in psycho-educational counseling techniques. Moreover, data provided by this study may encourage policymakers to legislate policies that make psychotherapists available and accessible in antenatal care units and ensure that staff have adequate training via continuing education programs to screen for antenatal depressive symptoms.

Palliative care for older people with dementia-we need a paradigm shift in our approach.

Older people with dementia have multiple palliative care needs, with pain, agitation, dyspnoea, aspiration and pressure ulcers being common and persistent in advanced dementia. Anticipating the person's possible symptoms requires knowledge of the whole person, including the type of dementia, which is problematic when the dementia type is often not documented. A palliative care approach to dementia should look at symptoms across the four pillars of palliative care, but in reality, we tend to over-focus on physical and psychological symptoms, while spiritual and emotional needs can be overlooked, especially around the time of diagnosis, where such needs may be significant. Advance care planning (ACP) is a central tenet of good dementia palliative care, as the person may lose their ability to communicate and make complex decisions over time. Despite this, care planning is often approached too late, and with the person's family rather than with the person; much of the literature on ACP in dementia is based on proxy decision-making for people in residential care. Thus, we need a paradigm shift in how we approach dementia, beginning with timely diagnosis that includes the dementia type, and with services able to assess and meet emotional and spiritual needs especially around the time of diagnosis, and with timely ACP as an integral part of our overall approach.

A scoping review of the evidence for community-based dementia palliative care services and their related service activities.

BACKGROUND: Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. METHODS: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. RESULTS: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. CONCLUSIONS: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home.

An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting.

BACKGROUND: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings. METHODS: A secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire - Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures' domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis. RESULTS: Sixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p < 0.05). CONCLUSIONS: This study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research.

Challenges for palliative care day services: a focus group study.

BACKGROUND: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. METHODS: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. RESULTS: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted. CONCLUSIONS: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service.

A scoping review protocol: Mapping the range of policy-related evidence influencing maternal health outcomes in a fragile, low-income country.

AIM: The aim of this scoping review is to map the range of policy-related evidence influencing maternal health outcomes and determine the cultural and contextual factors influencing maternal health in Myanmar, a low-income, fragile setting. DESIGN: Eligible studies identified will include maternal health-related policies, policy documents and research. All types of health-related policies aimed at targeting population health and well-being influencing maternal mortality and morbidity will be considered. METHODS: This scoping review has been developed using the Joanna Briggs Institute recommendations. The database search will include MEDLINE, CINAHL, Web of Science, Cochrane Library and the grey literature. Documents published in English and Burmese in the past 10 years will be included. Numerical data will be extracted and summarized in diagrammatic form, and a descriptive format will be used to present narrative accounts. Funding approval was granted by the Economic and Social Research Council in January 2020. This protocol was registered with OSF registries (Open-ended Registration) on 30 March 2021. DISCUSSION: Little is known about which strategies work best as there is less evidence related to health policy and contextual factors in which maternal health care is delivered in fragile, low-income settings. Understanding the context of maternal health is key to the planning and implementation of effective maternal health services designed to address women's needs. IMPACT: This review will map the range of policy-related evidence influencing maternal health outcomes in Myanmar and will underpin future large-scale research in other low-income and fragile settings. The results of this scoping review will provide recommendations for developing and improving practice and education for nurses and midwives working in resource-restricted contexts.

Exploring the costs, consequences and efficiency of three types of palliative care day services in the UK: a pragmatic before-and-after descriptive cohort study.

BACKGROUND: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. METHODS: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). RESULTS: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121-£190 (excluding volunteer contribution) to £172-£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. CONCLUSIONS: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.

The emerging contribution of speech and language therapists in awake craniotomy: a national survey of their roles, practices and perceptions.

BACKGROUND: Awake craniotomy with electrical stimulation has become the gold standard for tumour resection in eloquent areas of the brain. Patients' speech during the procedure can inform the intervention and evidence for language experts to support the procedure is building. Within the UK a burgeoning speech and language therapist awake craniotomy network has emerged to support this practice. Further evidence is needed to underpin the specific contribution of speech and language therapists working within the awake craniotomy service. AIMS: To investigate and analyse the current practices of speech and language therapists: their role, pre-, intra- and postoperative assessment, and management practice patterns and skill set within awake craniotomy. METHODS & PROCEDURES: Speech and language therapists in the UK, who work in awake craniotomy, were invited to complete an online questionnaire. Participants were recruited via several networks supported by a social media campaign. Data were analysed using a mixed methodology approach including descriptive statistics, summative and conventional content analysis. OUTCOMES & RESULTS: A total of 24 speech and language therapists completed the survey, an unknown proportion of the available population. All four UK countries were represented. The majority were highly specialist clinicians 58% (n = 14) with the remainder clinical leads 25% (n = 6) or specialist clinicians 17% (n = 14). Only 29% (n = 7) had funding for awake craniotomy or had awake craniotomy in their job description. Median experience with awake craniotomy was 3 years. Median estimated contact time per case was 10.3 h. Current intraoperative practice is characterized by a sustained period of real-time, dynamic, informal assessment of speech, language, oromotor and cognitive functions. Respondents described a range of intraoperative clinical deficits that, once detected, are immediately communicated to surgeons. There was evidence of variable and diverse language mapping practices and barriers to the translation of information at multidisciplinary team level. Barriers to participation in awake craniotomy included lack of: standardized validated language mapping methods, funding, standardized training methods and guidance to direct practice. CONCLUSIONS & IMPLICATIONS: The evidence suggests areas of consistent practice patterns in preoperative preparation and intraoperative assessment. However, considerable variability exists within language testing and mapping that would benefit from validation. These speech and language therapists support improved outcomes of awake craniotomy by real-time intraoperative speech, language, oromotor and cognitive assessment, rapid detection of clinical deterioration and immediate communication to surgeons. Further research exploring intraoperative language testing, consistent use of language mapping terminology, and selection of test methods is recommended.

Key components of knowledge transfer and exchange in health services research: Findings from a systematic scoping review.

AIMS: To identify the key common components of knowledge transfer and exchange in existing models to facilitate practice developments in health services research. BACKGROUND: There are over 60 models of knowledge transfer and exchange designed for various areas of health care. Many of them remain untested and lack guidelines for scaling-up of successful implementation of research findings and of proven models ensuring that patients have access to optimal health care, guided by current research. DESIGN: A scoping review was conducted in line with PRISMA guidelines. Key components of knowledge transfer and exchange were identified using thematic analysis and frequency counts. DATA SOURCES: Six electronic databases were searched for papers published before January 2015 containing four key terms/variants: knowledge, transfer, framework, health care. REVIEW METHODS: Double screening, extraction and coding of the data using thematic analysis were employed to ensure rigour. As further validation stakeholders' consultation of the findings was performed to ensure accessibility. RESULTS: Of the 4,288 abstracts, 294 full-text articles were screened, with 79 articles analysed. Six key components emerged: knowledge transfer and exchange message, Stakeholders and Process components often appeared together, while from two contextual components Inner Context and the wider Social, Cultural and Economic Context, with the wider context less frequently considered. Finally, there was little consideration of the Evaluation of knowledge transfer and exchange activities. In addition, specific operational elements of each component were identified. CONCLUSIONS: The six components offer the basis for knowledge transfer and exchange activities, enabling researchers to more effectively share their work. Further research exploring the potential contribution of the interactions of the components is recommended.

International reflections on caring for people with advanced dementia.

Dementia is causing global concern with its massive impacts on affected individuals, families, society, and national economies. As the disease progresses, patients' needs increase in number, depth, and breadth, covering physical, psychological, social, and spiritual domains. Care varies from place to place, from country to country and from east to west. To learn from some of these variations, we explored advanced dementia care in United Kingdom and Japan. Informed by an overview of literature on care of people with advanced dementia, we reflected on direct nonparticipant observations of care in urban areas of Northern Ireland and Japan. While we identified a common purpose to address the complex needs of people living with dementia, there were differences in the approach to care. Broadly, dementia care in United Kingdom tends toward person-centered care with a strong interest in Advance Care Planning as part of a palliative care approach. In Japan, we found less evidence of early stage palliative care and more of family-based decision making to inform care of older people. In both countries, dementia care varies regionally, being more available in some areas than others. International knowledge exchange and further comparative studies will help to improve care for people with advanced dementia, everywhere.

Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial.

BACKGROUND: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. AIM: To evaluate the effectiveness of advance care planning with family carers in dementia care homes. DESIGN: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. SETTING/PARTICIPANTS: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. RESULTS: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p < 0.001). CONCLUSION: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.

The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study.

AIM: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. BACKGROUND: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. DESIGN: Descriptive qualitative study. METHODS: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. RESULTS: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. CONCLUSION: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world.

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.

BACKGROUND: Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. AIM: (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. DESIGN: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. SETTING/PARTICIPANTS: A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. RESULTS: People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. CONCLUSION: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.

Interventions for prevention of bullying in the workplace.

BACKGROUND: Bullying has been identified as one of the leading workplace stressors, with adverse consequences for the individual employee, groups of employees, and whole organisations. Employees who have been bullied have lower levels of job satisfaction, higher levels of anxiety and depression, and are more likely to leave their place of work. Organisations face increased risk of skill depletion and absenteeism, leading to loss of profit, potential legal fees, and tribunal cases. It is unclear to what extent these risks can be addressed through interventions to prevent bullying. OBJECTIVES: To explore the effectiveness of workplace interventions to prevent bullying in the workplace. SEARCH METHODS: We searched: the Cochrane Work Group Trials Register (August 2014); Cochrane Central Register of Controlled Trials (CENTRAL; The Cochrane Library 2016, issue 1); PUBMED (1946 to January 2016); EMBASE (1980 to January 2016); PsycINFO (1967 to January 2016); Cumulative Index to Nursing and Allied Health Literature (CINAHL Plus; 1937 to January 2016); International Bibliography of the Social Sciences (IBSS; 1951 to January 2016); Applied Social Sciences Index and Abstracts (ASSIA; 1987 to January 2016); ABI Global (earliest record to January 2016); Business Source Premier (BSP; earliest record to January 2016); OpenGrey (previously known as OpenSIGLE-System for Information on Grey Literature in Europe; 1980 to December 2014); and reference lists of articles. SELECTION CRITERIA: Randomised and cluster-randomised controlled trials of employee-directed interventions, controlled before and after studies, and interrupted time-series studies of interventions of any type, aimed at preventing bullying in the workplace, targeted at an individual employee, a group of employees, or an organisation. DATA COLLECTION AND ANALYSIS: Three authors independently screened and selected studies. We extracted data from included studies on victimisation, perpetration, and absenteeism associated with workplace bullying. We contacted study authors to gather additional data. We used the internal validity items from the Downs and Black quality assessment tool to evaluate included studies' risk of bias. MAIN RESULTS: Five studies met the inclusion criteria. They had altogether 4116 participants. They were underpinned by theory and measured behaviour change in relation to bullying and related absenteeism. The included studies measured the effectiveness of interventions on the number of cases of self-reported bullying either as perpetrator or victim or both. Some studies referred to bullying using common synonyms such as mobbing and incivility and antonyms such as civility. Organisational/employer level interventionsTwo studies with 2969 participants found that the Civility, Respect, and Engagement in the Workforce (CREW) intervention produced a small increase in civility that translates to a 5% increase from baseline to follow-up, measured at 6 to 12 months (mean difference (MD) 0.17; 95% CI 0.07 to 0.28).One of the two studies reported that the CREW intervention produced a small decrease in supervisor incivility victimisation (MD -0.17; 95% CI -0.33 to -0.01) but not in co-worker incivility victimisation (MD -0.08; 95% CI -0.22 to 0.08) or in self-reported incivility perpetration (MD -0.05 95% CI -0.15 to 0.05). The study did find a decrease in the number of days absent during the previous month (MD -0.63; 95% CI -0.92 to -0.34) at 6-month follow-up. Individual/job interface level interventionsOne controlled before-after study with 49 participants compared expressive writing with a control writing exercise at two weeks follow-up. Participants in the intervention arm scored significantly lower on bullying measured as incivility perpetration (MD -3.52; 95% CI -6.24 to -0.80). There was no difference in bullying measured as incivility victimisation (MD -3.30 95% CI -6.89 to 0.29).One controlled before-after study with 60 employees who had learning disabilities compared a cognitive-behavioural intervention with no intervention. There was no significant difference in bullying victimisation after the intervention (risk ratio (RR) 0.55; 95% CI 0.24 to 1.25), or at the three-month follow-up (RR 0.49; 95% CI 0.21 to 1.15), nor was there a significant difference in bullying perpetration following the intervention (RR 0.64; 95% CI 0.27 to 1.54), or at the three-month follow-up (RR 0.69; 95% CI 0.26 to 1.81). Multilevel InterventionsA five-site cluster-RCT with 1041 participants compared the effectiveness of combinations of policy communication, stress management training, and negative behaviours awareness training. The authors reported that bullying victimisation did not change (13.6% before intervention and 14.3% following intervention). The authors reported insufficient data for us to conduct our own analysis.Due to high risk of bias and imprecision, we graded the evidence for all outcomes as very low quality. AUTHORS' CONCLUSIONS: There is very low quality evidence that organisational and individual interventions may prevent bullying behaviours in the workplace. We need large well-designed controlled trials of bullying prevention interventions operating on the levels of society/policy, organisation/employer, job/task and individual/job interface. Future studies should employ validated and reliable outcome measures of bullying and a minimum of 6 months follow-up.

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research.

BACKGROUND: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. MAIN BODY: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. CONCLUSIONS: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

Interviews with Irish healthcare workers from different disciplines about palliative care for people with Parkinson's disease: a definite role but uncertainty around terminology and timing.

BACKGROUND: An integrated palliative care approach is recommended in all life-limiting diseases, including Parkinson's disease (PD). However research shows that people with PD have unmet palliative care needs. The study aimed to explore multidisciplinary healthcare workers' (HCWs) views on palliative care for people with PD, identifying perceived barriers and facilitators. METHODS: A qualitative design was used; data was analysed using Thematic Analysis. Semi-structured interviews were conducted with 30 HCWs, working either with people with PD or in a palliative care setting in Ireland. RESULTS: A number of perceived barriers were evident helping to account for the previously reported unmet palliative care needs in PD. A lack of education about PD and palliative care meant that HCWs were unsure of the appropriateness of referral, and patients and carers weren't equipped with information to seek palliative care. A lack of communication between PD and palliative care specialists was seen to impede collaboration between the disciplines. Uncertainty about the timing of palliative care meant that it was often not introduced until a crisis point, despite the recognised need for early planning due to increased prevalence of dementia. CONCLUSIONS: Most HCWs recognised a need for palliative care for people with PD; however several barriers to implementing a palliative care approach in this population need to be addressed. Implications for clinical practice and policy include the need for an integrated model of care, and education for all HCWs, patients, carers, and the public on both the nature of advanced PD, and the potential of palliative care in support of patients and their family members.

Knowledge transfer and exchange frameworks in health and their applicability to palliative care: scoping review protocol.

AIM: To review knowledge transfer and exchange frameworks used in health, to analyse the core concepts of these frameworks and appraise their potential applicability to palliative care. BACKGROUND: Although there are over 60 different models of knowledge transfer and exchange designed for various areas of the fields of health care, many remain largely unrefined and untested. There is a lack of studies that create guidelines for scaling-up successful implementation of research findings and of proven models ensuring that patients have access to optimal health care, guided by current research. DESIGN: The protocol for this scoping review was devised according to the guidelines proposed by Arksey and O'Malley (2005) and Levac et al. (2010). METHODS: The protocol includes decisions about the review objectives, inclusion criteria, search strategy, study selection, data extraction, quality assessment, data synthesis and plans for dissemination. DISCUSSION: The review will allow us to identify the currently used models of knowledge transfer and exchange in healthcare setting and analyse their applicability to the complex demands of palliative care. Results from this review will identify effective way of translating different types of knowledge to different PC providers and could be used in hospital, community and home based PC and future research.