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Physical restraint is a restrictive practice used in schools across the UK and there have been recent concerns around the appropriateness and frequency of using this intervention with pupils. Current data suggest that pupils with Special Educational Needs (SEN), a vulnerable and diverse group, are experiencing the majority of physical restraint used in educational settings. Physical restraint can lead to negative emotional and physical consequences in pupils who experience it and it is, therefore, important to explore alternative strategies to reduce or eliminate its use in educational settings. A systematic literature search found 15 studies (date range 1999-2019) that explored the effectiveness of school-wide or individual approaches in reducing the frequency and/or duration of physical restraint. Most studies saw a significant decrease in physical restraint, and this study will discuss the key elements of the successful approaches, as well as consider the facilitators and barriers to implementation.

A recent focus on attachment and trauma awareness (ATA) in schools has led to whole-school training programmes and evaluations. The outcomes have been positive; however, the dominant focus of research is on the implementation of whole-school ATA in mainstream settings. This project adopted a case study to explore how the training and approaches had been implemented in a school community, including a special school and pupil referral units. Data were collected from three semi-structured interviews with staff in varying roles, and the views of 11 pupils were obtained via a classroom activity as supplementary data. Thematic analysis highlighted five key themes which directly answered the three research questions, namely: strategies and approaches used; pupil outcomes; facilitators to implementation; barriers to implementation; and training and improvements. It is hoped that this study will help further professional understanding and implementation of ATA in non-mainstream settings. The implications and limitations of the study are discussed.

Purpose of reviewThe study aims to provide a summary of recent developments for diagnosing and managing posterior cortical atrophy (PCA). We present current efforts to improve PCA characterisation and recommendations regarding use of clinical, neuropsychological and biomarker methods in PCA diagnosis and management and highlight current knowledge gaps.Recent findingsRecent multi-centre consensus recommendations provide PCA criteria with implications for different management strategies (e.g. targeting clinical features and/or disease). Studies emphasise the preponderance of primary or co-existing Alzheimer's disease (AD) pathology underpinning PCA. Evidence of approaches to manage PCA symptoms is largely derived from small studies.SummaryPCA diagnosis is frequently delayed, and people are likely to receive misdiagnoses of ocular or psychological conditions. Current treatment of PCA is symptomatic - pharmacological and non-pharmacological - and the use of most treatment options is based on small studies or expert opinion. Recommendations for non-pharmacological approaches include interdisciplinary management tailored to the PCA clinical profile - visual-spatial - rather than memory-led, predominantly young onset - and psychosocial implications. Whilst emerging disease-modifying treatments have not been tested in PCA, an accurate and timely diagnosis of PCA and determining underlying pathology is of increasing importance in the advent of disease-modifying therapies for AD and other albeit rare causes of PCA.

Despite evidence for the importance of playtime for children, the use of the withdrawal of playtime is a sanction that is used throughout schools in the UK. In light of this, there have been recent arguments highlighting the need to explore alternatives to this sanction in order to protect opportunities for playtime. This exploratory action research study included an initial focus group and multiple psychological consultations with teachers in a single setting to collaboratively explore and review potential alternatives. Findings include teachers wanting to address behaviours that often result in the withdrawal of playtime, and strategies to address these were co-constructed and implemented. Other findings included contextual barriers to stopping the use of withdrawing playtime, such as curriculum constraints, as well as facilitative aspects to stopping the withdrawal of playtime. Further implications for EP and school practice and research, as well as limitations, are discussed.

Background: Primary progressive aphasia (PPA) describes a group of language-led dementias. PPAs are complex, diverse and difficult to diagnose, and therefore conventional models of aphasia and dementia treatment do not meet their needs. The research evidence on intervention for PPA is developing, but to date there are only a few case studies exploring the experiences of people with PPA (PwPPA) themselves. Aims: To explore the experiences and opinions of PwPPA and their communication partners (CPs) to understand how speech and language therapy (SLT) services can better meet their needs. Methods & Procedures: A qualitative research approach was used whereby PwPPA and their friends or family members were recruited to participate in focus groups, via advertisements in the Rare Dementia Support PPA group newsletters. Consenting participants were allocated to attend one of four focus groups hosted on an online video conferencing platform. Participants were asked about their communication difficulties, and how SLT could address these needs. All meetings were transcribed, and data were examined using reflexive thematic analysis. Outcomes & Results: Six PwPPA and 14 CPs representing all three PPA variants and mixed PPA participated in the focus groups. Four main themes were identified during the analysis of the focus group discussions: (1) CPs' burden, (2) adjusting to the diagnosis, (3) communication abilities and difficulties and (4) beyond language. A further 10 subthemes were identified. Conclusions & Implications: This study provides a greater understanding of the experiences and needs of PwPPA and their families in relation to SLT. This work underlines the importance of a person-centred approach that considers the broader needs of both the PwPPA and the people around them. This will enable service providers to deliver SLT that meets the needs of PwPPA and their families and will also inform future research in this field.

Children have a right to play, as outlined by the United Nations, due to its important role in holistic development. However, as with many other human rights, children's access to their right to play was disrupted by the COVID-19 pandemic and associated restrictions. With several studies demonstrating the ways in which children's play changed during times of restriction, this research aimed to explore whether these changes continued to be observed once restrictions had lifted. A mixed methods design was utilised: a 22-item questionnaire was distributed by schools in England to 124 caregivers who shared their observations of their children's play during times of restriction and the six months prior to data collection. Quantitative analysis demonstrates that increases in time to play, adult-child play, and outdoor play during the pandemic had been counteracted since restrictions were lifted; however, device play remained elevated. Qualitative comments highlight the impact of children's affect on their play, the activities children chose to pursue, and the extent of increases in screen time. The implications of these findings are discussed, including a need to place greater value on play in the home and the role of educational psychologists in supporting this. [ABSTRACT FROM AUTHOR]

Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer's disease and 10 people with posterior cortical atrophy. While participants' interactions with their everyday environments were challenged by their diagnoses, they were all finding ways to continue meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Ongoing engagement with both fun and functional activities offered participants living with different dementias opportunities to connect with others, to offer care and support (as well as receive it), and to maintain a sense of self and identity. Implications are discussed regarding the development and delivery of tailored interventions and support to enable continued engagement in meaningful activities for people with different types of dementia living in the community. [ABSTRACT FROM AUTHOR]

Aims: Familial frontotemporal dementia (fFTD) is an inherited neurodegenerative condition characterised by executive dysfunction, impairments in social cognition, behaviour and language. Although no disease‐modifying interventions are currently available, several treatments are undergoing clinical trials. This study sought to understand the barriers and facilitators to taking part in such trials, as well as general perceptions of the treatments undergoing trial. Method: Twelve interviews took place with fourteen participants: eight individuals who were genetically at‐risk of developing fFTD, two individuals diagnosed with fFTD and four spousal carers. Their views and experiences of clinical trials were explored using thematic analysis. Results: Five main themes were developed: (1) effects on the individual, (2) implications for others, (3) systemic considerations, (4) the impact of genetic status and disease progression and (5) the role of communication and understanding. Conclusions: The decision to participate in clinical trials was said to be complex, involving consideration of logistical barriers alongside health implications. Participants identified potential advantages of participating in clinical trials to be direct health benefits and the ability to help others, however risks to participants and their families' physical and psychological wellbeing were also named. Relationships between organisations and participants were consistently considered to be important, with lack of psychological care at various timepoints post diagnosis; unclear communication and expectation‐setting; and inadequate organisational collaboration all identified as barriers. Participants indicated that increased health‐professional interest in FTD and an associated increase in opportunities would be key facilitators for greater participation in clinical trials. [ABSTRACT FROM AUTHOR]

Retroviruses are an ancient viral family that have globally coevolved with vertebrates and impacted their evolution. In Australia, a continent that has been geographically isolated for millions of years, little is known about retroviruses in wildlife, despite the devastating impacts of a retrovirus on endangered koala populations. We therefore sought to identify and characterize Australian retroviruses through reconstruction of endogenous retroviruses from marsupial genomes, in particular the Tasmanian devil due to its high cancer incidence. We screened 19 marsupial genomes and identified over 80,000 endogenous retrovirus fragments which we classified into eight retrovirus clades. The retroviruses were similar to either Betaretrovirus (5/8) or Gammaretrovirus (3/8) retroviruses, but formed distinct phylogenetic clades compared to extant retroviruses. One of the clades (MEBrv 3) lost an envelope but retained retrotranspositional activity, subsequently amplifying throughout all Dasyuridae genomes. Overall, we provide insights into Australian retrovirus evolution and identify a highly active endogenous retrovirus within Dasyuridae genomes. [ABSTRACT FROM AUTHOR]

Background and purpose: Logopenic variant primary progressive aphasia (lvPPA) is a major variant presentation of Alzheimer's disease (AD) that signals the importance of communication dysfunction across AD phenotypes. A clinical staging system is lacking for the evolution of AD‐associated communication difficulties that could guide diagnosis and care planning. Our aim was to create a symptom‐based staging scheme for lvPPA, identifying functional milestones relevant to the broader AD spectrum. Methods: An international lvPPA caregiver cohort was surveyed on symptom development under an 'exploratory' survey (34 UK caregivers). Feedback from this survey informed the development of a 'consolidation' survey (27 UK, 10 Australian caregivers) in which caregivers were presented with six provisional clinical stages and feedback was analysed using a mixed‐methods approach. Results: Six clinical stages were endorsed. Early symptoms included word‐finding difficulty, with loss of message comprehension and speech intelligibility signalling later‐stage progression. Additionally, problems with hearing in noise, memory and route‐finding were prominent early non‐verbal symptoms. 'Milestone' symptoms were identified that anticipate daily‐life functional transitions and care needs. Conclusions: This work introduces a new symptom‐based staging scheme for lvPPA, and highlights milestone symptoms that could inform future clinical scales for anticipating and managing communication dysfunction across the AD spectrum. [ABSTRACT FROM AUTHOR]

Background: People with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease may experience language and communication difficulties. However, the role of speech and language interventions for people with these non‐language led dementias has received little attention. Aims: This study aimed to explore the experiences and perspectives of people living with these conditions, and their families, regarding their language and communication difficulties and how speech and language therapy could address these needs. Methods: This study employed a qualitative design to explore the experiences of people living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy or young onset Alzheimer's disease, and to understand their opinions about speech and language therapy. Participants were recruited from a support service connected to a dementia clinic to attend one of five focus group meetings. Videorecorded focus groups and interviews were transcribed, and reflexive thematic analysis was used to analyse data from people affected by each type of dementia. Results: A total of 25 participants were recruited to the study, with representation across the different forms of non‐language led dementias. The four main themes identified were: (1) communication difficulties as a key difficulty, (2) loss and loneliness, (3) speech and language therapy, and (4) the role of the caregiver. Sixteen subthemes were also identified which highlighted individual issues across disease types. Discussion: Although all the forms of dementia studied here are not considered to be language‐led, people with these conditions and/or their care partners identified speech, language and communication as common challenges. These communication difficulties were reported to have a negative impact on their social participation and mental health and participants felt speech and language interventions could help. There is a need for research exploring speech and language interventions developed for and with people with non‐language led dementias and their care partners, to ensure they meet the needs of the people they are designed for. WHAT THIS PAPER ADDS: What is already known on the subject: People with primary progressive aphasia present with speech, language and communication difficulties, and several speech and language interventions have been developed to meet the needs of this population. However, people with non‐language led dementias may also experience speech, language and communication difficulties, and little is known about interventions that may address these difficulties. What this paper adds to existing knowledge: People living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease report experiencing speech, language and communication difficulties that impact on the person with dementia's social participation and mood. Participants in this study also shared their opinions about how speech and language interventions could help, from the earliest stages of the disease. What are the potential or actual clinical implications of this work?: Speech and language therapists need to address the individual speech, language and communication needs of people with dementias, even those that are not thought to be language‐led. Current speech and language therapy service provision does not meet the needs of people with non‐language led dementias and further research is required to develop interventions and services to meet these needs. [ABSTRACT FROM AUTHOR]

Objectives: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program. Design: Pre–post interventional mixed methods study. Setting: Online videoconference group program for carers across the UK held in 2021. Participants: Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators. Intervention: The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions. Measurements: We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2. Results: Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression. Conclusion: The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness. [ABSTRACT FROM AUTHOR]

Background: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. Methods: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face‐to‐face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non‐profit organisations. Results: Forty‐nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single‐point‐of‐contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. Conclusions: These findings provide a first insight on dementia inequalities across Europe, generate cross‐country learnings on how to address these inequalities in dementia, and can underpin further solution‐focused research that informs policy and key decision makers to implement changes. Key points: There are numerous similar barriers to accessing dementia care across different European countries.Some of the key challenges to equitable dementia care are lack of workforce knowledge, lack of information, stigma, financial barriers, and lack of communication among care professionals.Cultural challenges, postcode lottery, and service suitability were also raised as key barriers to dementia care. [ABSTRACT FROM AUTHOR]

Physical restraint is a restrictive practice used in schools, but there are no up-to-date statistics concerning the frequency of its usage in England and there are concerns as to whether it is being used appropriately and effectively. Pupils with special educational needs are more likely to experience physical restraint in school, but opportunities for them to share their views through research are limited. Through semi-structured interviews, four primary-aged pupils from a specialist social, emotional and mental health (SEMH) educational setting shared their experiences of physical restraint, its impact on their relationships with staff members, and alternative strategies. Overall, participants had negative experiences of physical restraint, highlighting that it should be used for safety, but not for minor incidents. All participants identified useful alternative strategies that helped them to feel calmer. The ability to separate negative emotions associated with physical restraint and supporting staff members varied between participants. The findings are discussed in relation to implications for educational psychology practice and future research. [ABSTRACT FROM AUTHOR]

This review seeks to synthesise qualitative studies that focus on the experience of grief and loss in people living with dementia. Included studies were quality appraised, synthesised and analysed using inductive thematic analysis. 19 studies were selected for inclusion in the final review and metasynthesis, including 486 participants (115 participants living with dementia, 152 family carers, 219 professionals). Five key dimensions of grief in people living with dementia were identified during the analysis process: grieving for the person I used to be, grieving for how others see me, grieving for the person I will become, grieving for those who have died and what helps me with my grief. It is evident that people living with dementia can experience grief related to a range of previous, current and anticipated losses. Many of the studies included in this review did not directly include people living with dementia in their research and did not ask participants directly about their experience of grief and loss. As grief is a highly personal and individual experience, further research addressing the experience of grief that directly includes participants living with dementia is required, in order to improve awareness of grief-related needs and to develop and deliver support to meet these needs. [ABSTRACT FROM AUTHOR]

This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders' verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation. Healthcare professionals (n = 93) were surveyed to elicit their responses to learning through poetry and its acceptability as a learning tool. Poems conveyed a shared narrative of different aspects of lived experience, often owing to atypical symptoms, misunderstandings by professionals, lack of support pathways, and a continuous struggle to adapt. Stakeholder surveys indicated it was a valuable experience to both co-create and respond to the poems, whilst group interviews revealed people's experiences of the research poetry were characterised by reflection on lived experience, curiosity and exploration. Healthcare professionals' responses reinforced poetry's capacity to stimulate cognitive and affective learning specific to rare dementia support and prompt both empathy and critical thinking in practice. As the largest poetry-based study that we are aware of, this novel accessible approach of creating group poems yielded substantial information about the experiences and needs of those affected by rarer dementia and how poetry can contribute to healthcare education and training. [ABSTRACT FROM AUTHOR]

We used quantitative text analysis to examine conversations in a series of online support groups attended by care partners of people living with rare dementias (PLWRD). We used transcripts of 14 sessions (>100,000 words) to explore patterns of communication in trained facilitators' (n = 2) and participants' (n = 11) speech and to investigate the impact of session agenda on language use. We investigated the features of their communication via Poisson regression and a clustering algorithm. We also compared their speech with a natural speech corpus. We found that differences to natural speech emerged, notably in emotional tone (d = −3.2, p < 0.001) and cognitive processes (d = 2.8, p < 0.001). We observed further differences between facilitators and participants and between sessions based on agenda. The clustering algorithm categorised participants' contributions into three groups: sharing experience, self-reflection, and group processes. We discuss the findings in the context of Social Comparison Theory. We argue that dedicated online spaces have a positive impact on care partners in combatting isolation and stress via affiliation with peers. We then discuss the linguistic mechanisms by which social support was experienced in the group. The present paper has implications for any services seeking insight into how peer support is designed, delivered, and experienced by participants. [ABSTRACT FROM AUTHOR]

INTRODUCTION: Here we set out to create a symptom‐led staging system for the canonical semantic and non‐fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer's disease and other dementias. METHODS: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed‐methods sequential explanatory design. RESULTS: Both PPA syndromes were characterized by initial communication dysfunction and non‐verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages. Milestone symptoms were distilled to create a prototypical progression and severity scale of functional impairment: the PPA Progression Planning Aid ("PPA‐Squared"). DISCUSSION: This work introduces a symptom‐led staging scheme and functional scale for semantic and non‐fluent/agrammatic variants of PPA. Our findings have implications for diagnostic and care pathway guidelines, trial design, and personalized prognosis and treatment for PPA. Highlights: We introduce new symptom‐led perspectives on primary progressive aphasia (PPA).The focus is on non‐fluent/agrammatic (nfvPPA) and semantic (svPPA) variants.Foregrounding of early and non‐verbal features of PPA and clinical trajectories is featured.We introduce a symptom‐led staging scheme for PPA.We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid. [ABSTRACT FROM AUTHOR]

To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD). Twenty-five family carers of PLWRD participated in a series of ongoing online peer support groups on the theme of 'Independence and Identity'. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr's (2004) Social Support Behaviour Code (SSBC). Most of the social support behaviours outlined in the SSBC were identified within the sessions, along with two novel social support categories – 'Experiential Support' and 'Community Support' – and novel support behaviours including 'Advocacy and Collective Action' and 'Uses Humour'. The SSBC code 'Relationship' appeared to be of central importance. This study sheds light on the unique challenges of the caring context for those affected by non-memory-led and inherited dementias and the significant contributions carers can offer to, and receive from, peers in similar situations. It highlights the importance of services which recognise the value of the informational and emotional expertise of carers of PLWRD and encourages the continued development and delivery of tailored support for these populations. [ABSTRACT FROM AUTHOR]

Rationale: Children and young people's (CYP) behaviour can be impacted by experiences and communicate many different needs. It is recognised that behaviours characteristic of attachment difficulties are observed in CYP presumed to be securely attached, presenting as social and emotional difficulties. Therefore, it can be more effective and inclusive for schools to target a range of pupils. This is one reason why this systematic review was not limited solely to attachment-based interventions. Aims: This article reviewed recent research evidence relating to interventions schools have used to support CYP facing these challenges. The aim was to establish what interventions were being used by schools, and the outcomes for pupils. Methods: A systematic literature review of existing research was carried out using electronic databases and results were enhanced through reference harvesting. Studies meeting inclusion criteria were evaluated using Gough's Weight of Evidence framework and assessed by critical appraisal frameworks depending on the methods used. Findings: Within the ten studies, seven different interventions were used, and five themes emerged showing patterns in the outcomes linked to the interventions: social skills and relationships; confidence and self-esteem; behaviour; academic work and learning; wellbeing. Implications: The review provides useful information for professionals working within education, identifying potential school-based interventions, and evidencing the positive outcomes that can be achieved. Limitations: Strict criteria may have limited the studies available for review and the fidelity of interventions discussed is unknown. Conclusions: The review highlights a need for further research into evidence-based interventions to support pupils with attachment difficulties and related behaviours. [ABSTRACT FROM AUTHOR]

Legislation, literature and research have recently advocated the importance of establishing and representing the views of children and young people. This study aimed to establish how Educational Psychologists (EPs) in one authority ascertain and present children's views in written reports. Content analysis was undertaken on the pupils' view section of 30 Year nine transition reports to determine the themes represented. Additionally focus group interviews helped identify EPs' methods for collecting, selecting and reporting pupils' views, indicating a wide variety of practice. EPs are challenged to explore report writing practices, in terms of representing the voice of the child, within their professional contexts.

Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD's positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others' responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD's positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers' positive caring experiences and resources within healthcare and supportive settings. [ABSTRACT FROM AUTHOR]

Rare Dementia Support (RDS) is a UK‐based collaborative service led by the UCL Dementia Research Centre, which aims to empower, guide and inform people living with a rare dementia diagnosis and those who care about them. RDS covers familial Alzheimer's disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA), Lewy body dementia (LBD) and young‐onset Alzheimer's disease (YOAD). Following self‐referrals and clinical referrals from memory services and specialist neurology clinics across the UK, we provide one‐to‐one support and facilitate regular opportunities for members to meet each other and the team, through large and small support groups, themed programmes and regional support groups. We will describe the practices of the one‐to‐one Direct Support Team, which provides free information, advice and support from pre‐diagnosis navigation through to post‐bereavement support. This specialist emotional and practical support encompasses compassionate listening; solution focussed outcomes (to complement the diagnosis, treatment and monitoring); helping people to understand and adapt to their condition; empowering people to use their strengths to live fulfilled lives; designing strategies and interventions to manage complex situations (including issues of safeguarding, deprivation of liberty, etc); legal rights and financial support; and supporting transitions into later stages and end of life. We will also relate the practices of direct support to the broader principles of RDS as a whole (see Figure 1), including the implications of never discharging anyone from our service, and balancing person‐centred and disease‐specific approaches (the importance of knowing which disease each person has, and what person the disease has). An evaluation of the service will be presented, including characterisation of the current 4797 members, plus data from individual support consultations in 2022 (N = 1449) relating outcomes to personal (social connectedness, wellbeing, knowledge of condition and services), disease (diagnosis, severity) and service (support usage, intensity of discussion) factors. We will conclude by discussing existing examples of and new opportunities for partnership working – with local, national and international charities, clinical services, academic institutions and funding organisations – to improve access to specialist support for those with atypical, inherited and young onset dementias. [ABSTRACT FROM AUTHOR]

Background: Peer support has a key role to play in national and local health services worldwide given growing need, pressure on resources, and strategic drives towards supporting people to manage their own health. Yet evaluation of peer‐only and multi‐component peer and professional group services is held back by research methodology gaps, including the absence of direct, within‐session evaluation tools. The current study evaluates the relationship between participation and conversational characteristics using linguistic analysis of a series of online bereaved support groups. Method: Participants were bereaved family caregivers (N = 102) attending Rare Dementia Support bereaved support group meetings between March 2017 and March 2022. Attendance rates and (virtual) travel distance were compared for in person meetings (N = 9 sessions; 2017‐2019) and online meetings (N = 26 sessions; 2020‐2022). During each online session, notable phrases & contributions were recorded using a verbatim note‐making process and shared with participants post‐session as a reminder of the experiences shared by group members. These text files (660 phrases comprised of 9,600 words) were analysed using Linguistic Inquiry and Word Count (LIWC; Pennebaker et al., 2015) software, automatically classifying words into LIWC categories of analytical thinking, clout, authenticity and affect variables. Result: The switch to online sessions increased accessibility to bereaved support in terms of attendance rates (Figure 1A), geographical proximity (Figure 1B) and group consistency (Figure 1C, e.g. higher proportion of online attendees returned for further sessions [in person 42%, online 69%; McNemar χ2 = 3.84, p = 0.0001]). Linear regression analyses with robust standard errors revealed that greater session attendance (mean number of sessions attended by participants present) was associated with conversations that were more authentic and less emotional and definitive (i.e. more reflective) over time (regression coefficients: Authentic: 0.111 [0.073, 0.149]; Affect: ‐0.637 [‐1.089, ‐0.185]; Clout: ‐0.066 [‐0.112, ‐0.020]; see Figures 2A‐C). The level of analytical thinking was maintained across sessions (Analytic: ‐0.012 [‐0.086, 0.061]; see Figure 2D). Conclusion: Online peer groups offer a practical and effective medium for bereavement support. Shifting the focus of evaluation to the processes of social support – how it is delivered and received – rather than just the outcomes, offers insights into the mechanisms of peer support. [ABSTRACT FROM AUTHOR]

Background: Quantitative text analysis facilitates study of internal states of speakers in an interspace between self‐report measures and qualitative analyses. The methodology is well‐established in psychological research, including in numerous support group settings. Method: In this study, Linguistic Inquiry and Word Count (LIWC2015) was employed to characterise conversations in online multi‐component (peers and professionals) support groups for familial caregivers of people living with young onset, atypical or inherited (rare) dementias. Using a corpus of transcripts (129,616 words) from 14 sessions, the differences between trained facilitators' (n = 2) and participants' (n = 14) speech were examined, and the impact of agenda on discussion was investigated. Sessions were semi‐structured, addressing independence and identity, or unstructured, without agenda. Statistical methods included comparison of linguistic features with natural speech, Poisson regression, and a clustering algorithm. Result: Meaningful differences between natural speech and the corpus emerged, including in emotional tone (Tone; d = ‐3.2, p<0.001), level of analytic/informal language (Analytic; d = 0.8, p = 0.01), degree of expertise/confidence (Clout; d = 1.0, p = 0.002), and openness/guardedness (Authentic; d = ‐0.9, p = 0.006) (Figure 1). Differences were observed between facilitators and participants in the descriptive (Figure 1) and inferential (Figures 2&3) statistical methods employed. Differences between unstructured and semi‐structured sessions, including between different agendas in the semi‐structured sessions, were observed. Sessions 2 and 4 focused on the participant while sessions 1 and 3 focused on their loved one (Figure 2). The clustering algorithm categorised participants' conversational turns into three groups: sharing experience (EXP), self‐reflection (SELF), and group processes (GROUP). Contribution‐types were dispersed throughout sessions (Figure 3). Conclusion: Results suggest that LIWC2015 can be used to distinguish support group conversations from natural speech, facilitators from participants, and different sessions based on agenda. The methodology could be adapted for use by other peer‐support services wanting insight into their groups using only session transcripts as raw data. [ABSTRACT FROM AUTHOR]

People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65 years, often resulting in misdiagnosis and lack of appropriate care pathways. The objective of this study will be to better understand the subjective experience of the time period from first noticing symptoms to obtaining a formal diagnosis, through to accessing support, and onward to the present time. Through the concurrent use of line drawings and video-recorded interviews we will collect the stories of people living with different rarer dementias and/or family members who are care partners in Canada and the United Kingdom. Narrative and visual analysis will be used in parallel to methodologically explore how line drawing and verbal discourse interact and inform each other to construct knowledge, and how the use of drawing lines might enrich research interviews and increase accessibility of research participation. This novel research approach may also have implications for clinical interviewing, support services, and public engagement. To the best of our knowledge, this is the first study to retrospectively explore over time the experiences of people affected by rarer forms of dementia from initial symptoms—to diagnosis—to accessing support—to the present, using visual and verbal methodologies. [ABSTRACT FROM AUTHOR]

Between December 2013 and March 2014, the UK witnessed heavy and prolonged rainfall, including the wettest January on record in parts of the country and around twice the average monthly rainfall in other locations. The East Coast was also affected by the largest coastal surge since 1953. These events resulted in significant coastal damage and prolonged fluvial and groundwater flooding affecting a large expanse of England and Wales. During this period many properties, crucial transport infrastructure and farmland were flooded. This study for the UK Environment Agency, led by Risk & Policy Analysts (RPA) in association with HaskoningDHV UK, John Chatterton Associates and Morris Resource Economics, reviewed more than 500 documents, articles and reports and requested information from more than 640 individuals and organisations. Through careful consideration of the reliability of each and every piece of data, we were able to calculate a best estimate for the economic costs of the winter 2013/14 floods (in 2014 values) of €1.7 billion, with uncertainty resulting in a range of between €1.3 billion to €1.9 billion. Residential properties suffered the greatest proportion of damages, with 25% of total damages (best estimate of €410 million incurred by 10,465 properties).

Background: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. Objective: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. Methods: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. Results: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. Conclusions: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. [ABSTRACT FROM AUTHOR]

Keywords: calicivirus; emerging diseases; nidovirus; RNA sequencing; transcriptomics; viral discovery EN calicivirus emerging diseases nidovirus RNA sequencing transcriptomics viral discovery 931 938 8 05/13/22 20220601 NES 220601 INTRODUCTION Agnatha is an ancient superclass of jawless fish that gave rise to all other vertebrates after diverging from chordates ~535 million years ago (mya) (Janvier, 1981). Lamprey and hagfish viruses range from simpler viruses such as caliciviruses, to complex viruses such as bafiniviruses. As a subset of fish viruses, agnathan viruses are even more underexplored than teleost viruses. [Extracted from the article]