People with dementia disclosing their diagnosis to social networks: A systematic review and meta-synthesis.

Background And Objectives: Given the stigma of dementia, individuals with the condition may be wary to disclose their diagnosis to other people, both in face-to-face and digital settings. While sharing one's dementia diagnosis with others is essential for accessing valuable support for social, cognitive, and physical well-being, this area of research has largely been neglected. In this meta-synthesis, we aimed to systematically review qualitative research on the factors associated with online and offline self-disclosure in people with dementia.

Is it still autism? The increasing broadening of the autism spectrum.

Clinical significance of a broad autism phenotype (BAP) seems to be increasingly supported by growing reports of high prevalence of subthreshold autism spectrum disorder (sASD) or autistic traits (AT) in various demographic samples, particularly in individuals with psychiatric conditions. We question this increasing extension of the autism spectrum and its potential negative consequences for clinical services, research, cultural attitudes, and resource allocation, as well as alternative explanations of what is currently attributed to sASD and AT. In modern psychiatry the diagnostic threshold is paramount and associated with a significant impairment of functioning, implying that symptom specificity is more relevant than sensitivity.

"It's just getting the word out there": Self-disclosure by people with young-onset dementia.

Background: Sharing a dementia diagnosis with others is a prerequisite to accessing important support for social, cognitive, and physical activity. However, due to the stigma associated with dementia, individuals may be hesitant to disclose their diagnosis. Despite the importance of this issue, there is limited research on personal experiences with sharing one's diagnosis.

Mental health and conflict: a pilot of an online eye movement desensitisation and reprocessing (EMDR) intervention for forcibly displaced Syrian women.

Background: The Syrian conflict has been ongoing since 2011. Practical and scalable solutions are urgently needed to meet an increase in need for specialised psychological support for post-traumatic stress disorder given limited availability of clinicians. Training forcibly displaced Syrians with a mental health background to remotely deliver specialised interventions increases the availability of evidence based psychological support.

Understanding experiences of 'Gig Buddies': A befriending scheme for people with intellectual disabilities.

Background: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism.

Methods: Participants were recruited using convenience sampling.

The effect of an e-intervention on intellectual disability stigma among Nigerian and Kenyan internet users: a comparative randomised controlled trial.

Introduction: The negative consequences of stigma for the wellbeing of people with disabilities have raised public and global health concerns. This study assessed the impact of an e-intervention to reduce intellectual disability (ID) stigma among Nigerian and Kenyan internet-users.

Method: Participants aged 18+ and citizens of Nigeria and Kenya were recruited through online advertising.

'Who, When, How to Share': Pilot study of a new disclosure decision-making programme for autistic adults.

'Who, When, How to Share' is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful.

Digital adaptation of the Standing up for Myself intervention in young people and adults with intellectual disabilities: the STORM feasibility study.

Background: Stigma contributes to the negative social conditions persons with intellectual disabilities are exposed to, and it needs tackling at multiple levels. Standing Up for Myself is a psychosocial group intervention designed to enable individuals with intellectual disabilities to discuss stigmatising encounters in a safe and supportive setting and to increase their self-efficacy in managing and resisting stigma.

Objectives: To adapt Standing Up for Myself to make it suitable as a digital intervention; to evaluate the feasibility and acceptability of Digital Standing Up for Myself and online administration of outcome measures in a pilot; to describe usual practice in the context of the coronavirus disease 2019 pandemic to inform future evaluation.

Psychological and social outcomes of befriending interventions for adults with intellectual disabilities: A systematic review.

Background: Befriending is an intervention intended to provide companionship and support to socially isolated populations. This review aimed to understand the key characteristics and psychological and social outcomes of befriending interventions for adults with intellectual disabilities.

Methods: Systematic searches of electronic databases (PsycINFO, MedLine and Web of Science) identified 11 studies for inclusion.

Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia.

Objectives: People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure.

Standing up for Myself (STORM): Adapting and piloting a web-delivered psychosocial group intervention for people with intellectual disabilities.

Background: Our STORM intervention was developed for people (16 +) with intellectual disabilities to enhance their capacity to manage and resist stigma. The current study describes the adaptation of STORM for (synchronous) on-line delivery in the context of the Covid-19 pandemic.

Aims: To adapt the manualised face-to-face STORM group intervention for delivery via web-based meeting platforms and to conduct an initial pilot study to consider its acceptability and feasibility.

Development of stigma-related support for autistic adults: Insights from the autism community.

Many autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults.

Stigma among UK family carers of people living with dementia.

Background: Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia.

Aims: To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia.

Method: The FAMSI was tested with 70 carers of people living with dementia.

'Standing up for Myself' (STORM): Development and qualitative evaluation of a psychosocial group intervention designed to increase the capacity of people with intellectual disabilities to manage and resist stigma.

Background: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives.

Method: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre-existing groups (N = 67) in third sector and education settings participated.

A systematic review on autistic people's experiences of stigma and coping strategies.

Autism can be understood as a concealable stigmatized identity. This is the first systematic review to synthesize the literature on autistic people's experiences of stigma and coping strategies. 2877 studies were screened and 27 were included in this review.

A mixed methods exploration of "Creativity in Mind", an online creativity-based intervention for low mood and anxiety.

Background: Within the current context of a global pandemic, the value of the Internet has been greatly elevated for many people. This study is an investigation into a 30-day online intervention called Creativity in Mind (CIM).

Aims: To provide a preliminary indication of the relationship between participation in CIM and change in mood symptoms and wellbeing.

A qualitative exploration of stigma experience and inclusion among adults with mild to moderate intellectual disability in an Indonesian context.

Background: People with intellectual disability are among the most stigmatised groups in society. There is a paucity of studies reporting on how stigma is experienced in low- and middle-income countries. This study aims to explore the experience of stigma among adults with mild/moderate intellectual disability and the extent of their inclusion in Indonesian society.

Attitudes of key professionals towards people with intellectual disabilities and their inclusion in society: A qualitative study in an Indonesian context.

This study aimed to explore key professionals' attitudes towards people with intellectual disability (ID) and inclusion of said people in the community. Eighteen participants from three professional groups, comprising health practitioners (medical doctors, psychologists), mainstream/special education teachers, and religious leaders (Islam, Catholicism, Protestantism, Hinduism, and Buddhism) were recruited. Semistructured interviews, aided by two vignettes depicting mild and severe ID, were conducted.

Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia.

Background: A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale (SIS) is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and preliminary psychometric properties of self-stigma measures for people with dementia for use as measures of change.

Intellectual disability literacy and its connection to stigma: A multinational comparison study in three European countries.

Article 8 of the UN Convention on the Rights of People with Disabilities requires governments around the globe to raise awareness on issues of disability in their societies, combatting stereotypes, prejudices and harmful practices. Little comparative data is available on lay people's social representations of intellectual disability and associated stigma, which could inform actions in line with the convention. The present study compared intellectual disability literacy and stigma among adults in the general population in the UK, Austria and Germany (N = 1046), and examined the effects of providing an intellectual disability label on these outcomes.

"Who to Tell, How and When?": Development and Preliminary Feasibility of an Empowerment Intervention for People Living with Dementia Who are Fearful of Disclosing Their Diagnosis.

Objective: This study describes the adaptation of Honest, Open, Proud (HOP), to develop an empowerment intervention supporting disclosure decision-making for dyads of people living with dementia and their chosen supporter.

Methods: Medical Research Council guidelines for developing complex interventions informed intervention development and feasibility testing. This included identifying the evidence base and theory (establishing HOP theory of change, a systematic review on decision-making in dementia, a stakeholder consultation), modelling the intervention materials with research experts (creation of version 1.

Role of anxiety, depression and neurocognition for cognitive behavioural therapy pre-therapy skills in people living with dementia, older and younger adults.

Background: Anxiety and depression are common in people living with dementia (PLWD) and Cognitive behavioural therapy (CBT) seems to be one of the few efficacious interventions. However, PLWD's ability to engage with CBT has been questioned due to the presumed impact of neurocognitive impairment on core skills necessary to engage with CBT (pre-therapy skills). Here, we (i) compare CBT pre-therapy skills in PLWD to older and younger adults (OA, YA), (ii) examine potential confounders and mediators and (iii) explore associations of neurocognition, anxiety and depression with pre-therapy skills in PLWD.