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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]

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]

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]

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. [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]

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. [ABSTRACT FROM AUTHOR]

Barramundi aquaculture is at risk of severe disease outbreaks and massive production losses. Here we used bioinformatics to screen 84 farmed barramundi transcriptomes to identify novel viruses that could threaten barramundi aquaculture and to establish a barramundi aquaculture virome. We discovered five novel viruses: latid herpesvirus 1 (LatHV-1) from the Alloherpesviridae family, barramundi parvovirus 1 (BParV1) from the Parvoviridae family, barramundi calicivirus 1 (BCaV1) from the Caliciviridae family, and barramundi associated picorna-like virus 1 and 2 (BPicV1 and BPicV2) from the Picornaviridae family. LatHV-1, BCaV1, and BParV1 are closely related to pathogenic viruses found in other fish species that can cause mass mortality in farms. To aid in future viral surveillance, we also designed and successfully tested an RT-PCR assay for the detection of BCaV1. Overall, we discovered a range of pathogenic viruses in barramundi aquaculture, paving the way for developing effective detection methods to assist early outbreak management. • Novel viruses were discovered in farmed barramundi transcriptomes. • RT-PCR detection assay was developed and trialled for barramundi calicivirus 1. • Novel picorna-like viruses were discovered in barramundi farm ecosystems. [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]

People living with rarer forms of dementia tend to have progressive cognitive symptoms affecting skills other than memory and/or onset before the age of 65 years. They are often misdiagnosed and due to symptom profile or age of onset, do not usually fit well with care pathways designed for older people with typical Alzheimer's disease or vascular dementia. Although the arts have been increasingly used as interventions to support people with dementia, there is very little attention given to rarer dementia forms in arts and health research or practice. The objective of the present international study seeks to systematically explore four diverse forms of poetry writing within this population through virtual and in-person small and large group formats. Our approach includes investigating poetic processes as methodology through the lens of an arts-based methodological approach in order to explore how poems construct knowledge and a felt experience. We will also use more traditional qualitative approaches to understand the experience of writing, reading and listening to poetry as an intervention that can be used with different rarer forms of dementia. To the best of our knowledge, this will be the first study to explore poetry using multiple research protocols. The results will have implications for methodology development, co-constructed poetic inquiry and multiple opportunities for involving poetry in supporting people with dementia and family members. [ABSTRACT FROM AUTHOR]

Supporting ageing in place, quality of life and activity engagement are public health priorities for people living with dementia, but little is known about the needs and experiences of community-dwelling people with rarer forms of dementia with lesser known symptoms. Posterior cortical atrophy (PCA) is a rare form of dementia usually caused by Alzheimer's disease but which is characterised by diminished visual processing (rather than a dominant memory problem), which poses challenges for maintaining independence and accessing appropriate support. This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer's disease and 10 people with posterior cortical atrophy within their everyday home environments. While the data collection revealed much rich variation in individual and contextual factors, some tentative high-level differences in the experiences of everyday activities could be drawn out, seemingly attributable to the different diagnoses' differing dominant symptoms. These included people with posterior cortical atrophy being less likely to use environmental cues to initiate activities, and more likely to withhold from asking for support because of preserved insight into the impact of this on carers. This lack of initiation of activities could be misinterpreted as apathy. People with posterior cortical atrophy also were discouraged from engaging in activities by disorientation within the home, and difficulties localising, identifying and manipulating objects. People with the more common, memory-led presentation of Alzheimer's disease exhibited more memory-based difficulties with engaging with activities such as forgetting planned activities, where to locate the items required for an activity and the steps involved. Despite these distinct symptom-led challenges, all participants and their family members demonstrated resourcefulness and resilience in making creative adaptations to support continued engagement in everyday activities, supporting the widely reported management strategies of people with dementia of the Alzheimer's type more generally. These findings offer helpful insights into some the differing impacts dementia related visual and memory impairments can have on everyday activity engagement, which will be helpful for others navigating these challenges and the health and social care practitioners working with people affected by these conditions. The findings also highlight the vast individual variation in the multitude of individual and contextual factors involved in everyday activity engagement, and suggest important areas for future work utilising methods which are similarly high in ecological validity and accessibility as the home-based focussed ethnographic methods utilised here. • This is a novel focused ethnographic study of people with posterior cortical atrophy. • People with posterior cortical atrophy face distinct challenges with daily activities. • These can include difficulty using environmental cues and a hesitancy to ask for help. • Participants were resourceful in creating adaptations to support daily activities. [ABSTRACT FROM AUTHOR]

It has been highlighted that health and social care staff need a greater awareness of the needs and problems of those people with young onset dementia in the UK. Symptoms of Alzheimer's disease are relatively well known (memory loss, disorientation, language difficulties and behavioural problems). However, there is less awareness of dementia‐related visual processing impairments in Alzheimer's disease, Dementia with Lewy Bodies or rarer dementia syndromes such as posterior cortical atrophy (PCA), leading to delayed assessment, diagnosis and management. This qualitative study explored health and social care practitioners' opinions of the needs of people with dementia‐related visual processing impairment (such as individuals with PCA) and identify any training that these practitioners might need. Social workers, occupational therapists, care home staff, rehabilitation workers (visual impairment), optometrists and admiral nurses participated in focus groups or one‐to‐one semi‐structured interviews. All participants were shown video clips of people with dementia‐related visual impairment to facilitate discussion. Sixty‐one participants took part in focus groups or interviews between November 2014 and December 2015. Participants' experiences and understanding of dementia were explored and thematic analysis of the data identified two major themes. Theme 1 explores participants' understanding of dementia‐related visual impairments. Theme 2 recounts how participants address and support people with dementia‐related visual impairment and their families. Participants discussed, reflected and critically analysed the video clips during data collection. Most considered new perspectives of their own clients' difficulties and those participants working with people with rarer dementias consolidated their experiences. However, some participants seemed hesitant to accept the existence of visual processing impairment arising due to dementia, rationalising novel information to existing understanding of memory loss or behavioural problems. This study highlights that health and social care practitioners want more training and better understanding of less well‐recognised symptoms of dementia and rarer syndromes (including PCA) to ensure appropriate, evidence‐based assessment and intervention. [ABSTRACT FROM AUTHOR]

The participation of service users and the public in the development of clinical guidelines is increasingly valued in international guideline programmes. This paper extends the findings of Harding et al.'s (2010) exploration of the views of service users who participated in developing NICE mental health guidelines. This analysis considered the relative value of personal versus professional knowledge and experience, the barriers to service users contributing effectively in guideline development, the unspoken 'rules' concerning decision making, and issues of power and group dynamics. We combine these insights with observations from research in guideline development and with advances in the recovery movement and in the shared decision-making clinical model to suggest areas of improvement in guideline development, notably: translating evidence to recommendations, optimizing the acceptability of treatment recommendations to service users, and reconciling different types of knowledge. [ABSTRACT FROM AUTHOR]

Background and aims: Although the National Institute of Health and Clinical Excellence (NICE) mandates service user involvement in developing treatment guidelines, questions arise concerning appropriate mechanisms of involvement and its impact. This study sought to elicit users' perceptions of their involvement. Method: Grounded theory was used to analyse transcripts from interviews with 10 service user guideline development group representatives. Results: Four categories emerged suggesting that participants drew upon expertise developed through experience and impact upon the process and product of guideline development. Unwritten rules and social comparisons influence deliberations. Conclusions: Service users reported making a useful contribution despite intrinsic barriers. [ABSTRACT FROM AUTHOR]

Obtaining the views of children including those with Special Educational Needs (SEN) and involving them in decisions surrounding their life and learning has become an increasingly relevant issue. Enabling 'every child' to make a positive contribution is high on the list of government priorities. However, work in the complicated area of establishing the views of children with more severe and complex needs such as those with Profound and Multiple Learning Difficulties (PMLD) appears to be in its initial and investigative stages and there is an apparent dearth of literature in this area. This review presents the available literature in an attempt to explore the extent to which it is possible to ascertain the views of children with PMLD. A comprehensive literature search revealed two main themes within the literature incorporating the ethical and conceptual issues associated with ascertaining/not ascertaining the views of children with PMLD and the methods and tools that are effective in accessing the views of children with PMLD. There is an apparent need for more research to establish effective ways to enable the views of children with PMLD to be heard. EPs are well placed to become involved in enabling children to have a voice in decisions surrounding their education at many levels and a number of implications for EP practice are included in the review. [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. [ABSTRACT FROM AUTHOR]

Abstract: Contemporary researchers regard emotional states as multifaceted, comprising physiological, behavioural, cognitive and subjective components. Subjective, conscious experience of emotion can be inferred from linguistic report in humans, but is inaccessible to direct measurement in non-human animals. However, measurement of other components of emotion is possible, and a variety of methods exist for monitoring emotional processes in animals by measuring behavioural and physiological changes. These are important tools, but they have limitations including difficulties of interpretation and the likelihood that many may be sensitive indicators of emotional arousal but not valence—pleasantness/unpleasantness. Cognitive components of emotion are a largely unexplored source of information about animal emotions, despite the fact that cognition–emotion links have been extensively researched in human cognitive science indicating that cognitive processes—appraisals of stimuli, events and situations—play an important role in the generation of emotional states, and that emotional states influence cognitive functioning by inducing attentional, memory and judgement biases. Building on this research, it is possible to design non-linguistic cognitive measures of animal emotion that may be especially informative in offering new methods for assessing emotional valence (positive as well as negative), discriminating same-valenced emotion of different types, identifying phenotypes with a cognitive predisposition to develop affective disorders, and perhaps shedding light on the issue of conscious emotional experiences in animals. [Copyright &y& Elsevier]

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]

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. WHAT THIS PAPER ADDS: What is already known on this subject: We know that PwPPA can maintain or even make improvements in word retrieval and speech fluency with SLT exercises. There is also developing evidence of the benefits of interventions such as CP training, communication aid support and other functional interventions. What this paper adds to existing knowledge: This study provides an understanding of the experiences and opinions of people living with PPA and their families in relation to SLT. Results demonstrate that PwPPA and their families have to navigate a complex journey, identifying strategies to support communication but also the influence of personality and other cognitive symptoms. SLT was useful, but not always available. What are the potential or actual clinical implications of this work?: This study will enable service providers to better plan, justify funding for and delivery of SLT that will meet the needs of PwPPA and their families. Most importantly this work underlines the importance of a person‐centred approach, incorporating the broader needs of the person with PPA and those around them. [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]

The article provides information concerning the volume of gland in the assessment of prostatic disease in Great Britain. A study aims to assess the evidence examining the importance of prostate volume in the risk of malignancy, detection rates, treatment options and their subsequent success. Possible improvements to prostate biopsy protocols are also discussed.

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]

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]

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]

Background: There is an emerging evidence base that mindfulness for psychosis is a safe and effective intervention. However, empirical data on the within-session effects of mindfulness meditation was hitherto lacking. Aims: The aim of the study was to assess the impact of taking part in a mindfulness for psychosis group, using a within-session self-report measure of general stress, and symptom-related distress. Method: Users of a secondary mental health service (n = 34), who experienced enduring psychotic symptoms, took part in an 8-week mindfulness for psychosis group in a community setting. Mindfulness meditations were limited to 10 minutes and included explicit reference to psychotic experience arising during the practice. Participants self-rated general stress, and symptom-related distress, before and after each group session using a visual analogue scale. Results: Average ratings of general stress and symptom-related distress decreased from pre- to post-session for all eight sessions, although not all differences were statistically significant. There was no increase in general stress, or symptom-related distress across any session. Conclusions: There was evidence of positive effects and no evidence of any harmful effects arising from people with psychotic symptoms taking part in a mindfulness for psychosis session. [ABSTRACT FROM AUTHOR]

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]

Information processing by humans can be biased by their emotions - for example, anxious and depressed people tend to make negative judgements about events and to interpret ambiguous stimuli unfavourably. Here we show that such a 'pessimistic' response bias can also be measured in rats that are housed in unpredictable conditions. Our findings indicate that cognitive bias can be used as an indicator of affective state in animals, which should facilitate progress in animal-welfare studies. [ABSTRACT FROM AUTHOR]

Presents the perspectives of a mental health service user on the improvement of mental health services. Stereotyping of mental health service users; Reasons for making service users as speakers in conferences; Discrimination against service users.

Background and Objectives Research has indicated the benefit of music interventions on biological, psychological, and cognitive aspects of dementias, yet there is limited research focusing on music's role in communication. This study developed a conceptual understanding of how people with late-stage dementia may express themselves nonverbally and interact with others during a live music group over time. Research Design and Methods Eight people with advanced dementias in residential care (aged 82–97 years), four care staff, and three musicians participated in 8-hr-long weekly live Music for Life sessions and listened to 1-hr-long recorded music session. Visual grounded theory was used to analyze video data collected nonintrusively via the Fly 360-degree camera. Results The live music group facilitated a multisensory communicative environment allowing for verbal and nonverbal communicative actions, social interactional components and agency to develop over time. These aspects were influenced by three factors: time, one-to-one interaction within a group setting and the characteristics of the music. Discussion and Implications Nonverbal communication in later-stage dementia may be overlooked or underestimated by busy care staff and families. Using music as an interactive way to communicate can help develop mirroring and turn-taking which has been shown to improve quality of life for people with communication impairment, increase their nonverbal communication and allow for a connection to be built between people. Although further research is recommended, individuals responsible for residential care should feel confident that the development of ongoing music groups for this population is warranted as part of ongoing care. [ABSTRACT FROM AUTHOR]

Objectives: The Rare Dementia Support (RDS) Impact study will be the first major study of the value of multicomponent support groups for people living with or supporting someone with a rare form of dementia. The multicentre study aims to evaluate the impact of multicomponent support offered and delivered to people living with a rare form of dementia, comprising the following five work packages (WPs): (a) longitudinal cohort interviews, (b) theoretical development, (c) developing measures, (d) novel interventions, and (e) economic analysis.Methods: This is a mixed-methods design, including a longitudinal cohort study (quantitative and qualitative) and a feasibility randomised control trial (RCT). A cohort of more than 1000 individuals will be invited to participate. The primary and secondary outcomes will be in part determined through a co-design nominal groups technique prestudy involving caregivers to people living with a diagnosis of a rare dementia. Quantitative analyses of differences and predictors will be based on prespecified hypotheses. A variety of quantitative (eg, analysis of variance [ANOVA] and multiple linear regression techniques), qualitative (eg, thematic analysis [TA]), and innovative analytical methods will also be developed and applied by involving the arts as a research method.Results: The UCL Research Ethics Committee have approved this study. Data collection commenced in January 2020.Conclusions: The study will capture information through a combination of longitudinal interviews, questionnaires and scales, and novel creative data collection methods. The notion of "impact" in the context of support for rare dementias will involve theoretical development, novel measures and methods of support interventions, and health economic analyses. [ABSTRACT FROM AUTHOR]

Little structural information is available so far on amyloid fibrils consisting of immunoglobulin light chains. It is not understood which features of the primary sequence of the protein result in fibril formation. We report here MAS solid-state NMR studies to identify the structured core of κ-type variable domain light chain fibrils. The core contains residues of the CDR2 and the β-strands D, E, F and G of the native immunoglobulin fold. The assigned core region of the fibril is distinct in comparison to the core identified in a previous solid-state NMR study on AL-09 by Piehl at. al, suggesting that VL fibrils can adopt different topologies. In addition, we investigated a soluble oligomeric intermediate state, previously termed the alternatively folded state (AFS), using NMR and FTIR spectroscopy. The NMR oligomer spectra display a high degree of similarity when compared to the fibril spectra, indicating a high structural similarity of the two aggregation states. Based on comparison to the native state NMR chemical shifts, we suggest that fibril formation via domain-swapping seems unlikely. Moreover, we used our results to test the quality of different amyloid prediction algorithms. [ABSTRACT FROM AUTHOR]

Abstract: The present study examines the impact of group Person-Based Cognitive Therapy (PBCT) for distressing voices within an uncontrolled evaluation. In particular it utilizes a framework of acceptance of voices and self to enhance well-being and reduce distress and perceived voice-control. Sixty-two participants entered one of nine PBCT groups conducted over 8–12 sessions. Fifty participants completed therapy. Measures of well-being, distress, control and relating characteristics were completed pre- and post-therapy and at brief follow-up. Data were subjected to an intention-to-treat analysis. The groups achieved significant benefits in terms of well-being, distress, control and dependence upon the voice. The present study is the first to report significant improvement in both distress and control. Consequently, Group PBCT for distressing voices may prove a useful addition to existing psychological interventions and is worthy of further investigation. The findings are discussed in relation to clinical implications and limitations. [ABSTRACT FROM AUTHOR]