The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

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.

Unpaid carers' experiences of supporting people with dementia to use social media.

Objectives: The aim of this study was to explore unpaid carers' experiences of supporting people with dementia to use social media.Methods: Unpaid carers (n = 234) responded to an online survey about their attitudes towards people with dementia using social media and any experiences supporting this usage. Responses to closed questions were analysed using frequency analysis; qualitative data were analysed thematically.Results: Fifty-five carers (23.5%) cared for someone with dementia who used social media. Thematic analysis produced four themes: (1) carers as social media navigators; (2) social media supports care; (3) carers as social media guardians; and (4) labour-intensive work. Carers valued the social connectivity and stimulation social media provided but remained vigilant about online safety. They carefully managed the online experiences of people with dementia, balancing perceived benefits with safety, security, and caring demands.Conclusions: These findings shed light on the complexities of caring in the digital age. Many carers are supporting people with dementia in using social media, but there is little guidance on how best to do this. As older adults continue to embrace social media, carers, support organisations, and policymakers must adapt and work with technology developers to ensure safe and supportive online experiences.

"Your struggles are valid, you are worthy of help and you deserve to recover": narratives of recovery from orthorexia nervosa.

PURPOSE: Limited research has examined recovery processes and conceptualisations of recovery within orthorexia nervosa (ON). This study harnessed Instagram data to examine how people who self-identify with ON use the hashtag #OrthorexiaRecovery and how recovery is represented within this online space. METHODS: 500 textual posts containing #OrthorexiaRecovery were extracted from Instagram. Co-occurring hashtags were analysed descriptively to determine whether this online space is specific to ON, and textual data were analysed using reflexive thematic analysis. RESULTS: The hashtag analysis indicated that #OrthorexiaRecovery is being used within a wider context of eating disorder recovery and awareness, but also provides deep insights into experiences of recovery from ON. The thematic analysis generated five themes: the invisibility of orthorexia; a turbulent and continuous process; finding food freedom; from compulsive exercise to intuitive movement; a community of support. Our findings suggest that people with self-reported ON experience recovery as a continuous process and the current invisibility of ON within diagnostic criteria and wider society impedes recovery. While working towards recovery, users aimed to be free from diet culture, become more attuned to their bodies, and develop more adaptive relationships with food and fitness. Users noted a general lack of support for people with ON and so used this online space to create a supportive community, though some content was potentially triggering. CONCLUSION: Our findings highlight the importance of increased recognition of ON and the potential value of targeting societal norms and harnessing social identity resources within therapeutic interventions for ON.

It's not all about control: challenging mainstream framing of eating disorders.

BACKGROUND: The concept of control has long been suggested as a central factor in eating disorder (ED) aetiology. The concept is now so mainstream that it risks being used in a potentially reductionist, stigmatising or otherwise harmful manner. In this paper, we explore and discuss our positions on the use of control-related terminology for EDs. METHODS: The authors of this auto-ethnographic position paper include academic researchers, individuals with lived experience and clinicians (not mutually exclusive). In sharing our experiences and observations, we aim to raise awareness of the wider impacts that control framing can have on ED perceptions, treatment, recovery and individuals' lived experience. RESULTS: We argue that although control can play a role in some ED experiences, an overemphasis upon this factor to the exclusion of other conceptualisations is not beneficial. CONCLUSIONS: To mitigate against pathologisation of an individual, it is important to challenge a discourse that can lead to EDs being perceived as something 'wrong' with the individual, rather than a consequence of life events or other environmental influences. We identify priorities for the future for researchers, clinicians, policy makers and the wider public.

Control has often been described as a central factor within Eating Disorders (EDs). Whilst control can play a role in ED experiences, we argue that overemphasis upon this factor can result in other important factors being overlooked. For many individuals, EDs are the consequence of life events and/or other environmental influences. With this in mind, discourse which overemphasises control (e.g., rather than coping) can inaccurately portray EDs as something 'wrong' with the individual. It is important to challenge this discourse to encourage more appropriate perceptions of EDs. In turn, this could improve understanding and treatment of EDs, reduce stigma, and promote recovery.

'I found it the only place that spoke the same language': a thematic analysis of messages posted to an online peer support discussion forum for people living with dementia.

BACKGROUND: Despite the proliferation of online support communities, little is known about how people with dementia engage with them. AIM: The aim of this study was to explore the content of messages exchanged between members of the asynchronous Talking Point online discussion forum. METHOD: Using the sub-forum 'I have dementia', 100 conversation threads were randomly selected yielding 863 individual messages for analysis. Our data set was subjected to reflexive thematic analysis. RESULTS: Three themes were generated: journeying through dementia, reciprocal peer support and therapeutic creativity. The findings suggest that individuals used the forum to share their experiences of obtaining and adjusting to a dementia diagnosis, their current symptoms and how they addressed the challenges of daily living as well as the impacts on mood, confidence and connectedness. The forum was viewed as a safe space to reflect on the future and what it might hold for them and loved ones. Throughout these discussions, users supported each other, particularly in relation to the emotional impact of diagnosis and shared experiential information and advice, with referrals to external sources of support commonplace. Discussion around the role of therapeutic creativity was evident and its role as a coping mechanism described. Through engagement, a sense of community and companionship was evident and new members welcomed, supported and encouraged to join in. DISCUSSION: The forum appears to be filling an important gap in post-diagnostic support provision, particularly for those with rare forms of dementia. Clinicians, support workers and organisations could consider recommending online support forums to people with dementia.

Opportunities, challenges and tensions: Open science through a lens of qualitative social psychology.

In recent years, there has been a focus in social psychology on efforts to improve the robustness, rigour, transparency and openness of psychological research. This has led to a plethora of new tools, practices and initiatives that each aim to combat questionable research practices and improve the credibility of social psychological scholarship. However, the majority of these efforts derive from quantitative, deductive, hypothesis-testing methodologies, and there has been a notable lack of in-depth exploration about what the tools, practices and values may mean for research that uses qualitative methodologies. Here, we introduce a Special Section of BJSP: Open Science, Qualitative Methods and Social Psychology: Possibilities and Tensions. The authors critically discuss a range of issues, including authorship, data sharing and broader research practices. Taken together, these papers urge the discipline to carefully consider the ontological, epistemological and methodological underpinnings of efforts to improve psychological science, and advocate for a critical appreciation of how mainstream open science discourse may (or may not) be compatible with the goals of qualitative research.

The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review.

OBJECTIVES: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. METHODS: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. RESULTS: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. CONCLUSIONS: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.

The associations between autistic traits and disordered eating/drive for muscularity are independent of anxiety and depression in females but not males.

Previous research has shown a positive correlation between autistic traits and eating disorder symptoms, and this relationship appears to be independent of co-occurring mental health status. The current study followed a pre-registered analysis plan with the aim to investigate a previously unconsidered factor in the relationship between autistic traits and disorders of eating and body image: the drive for muscularity. Participants (N = 1068) completed the Autism Spectrum Quotient (AQ), Hospital Anxiety and Depression Scale (HADS), Eating Attitudes Test-26 (EAT-26) and Drive for Muscularity Scale (DMS). Positive correlations between AQ and EAT-26 and AQ and DMS were observed. In females, AQ remained significantly correlated with EAT-26 and DMS when controlling for co-occurring anxiety and depression symptoms, but this was not the case in males. These findings demonstrate the moderating role of sex, and the need to consider autistic traits in individuals diagnosed with, or at a heightened risk for, disorders of eating and body image.

Conceptualisations of health in orthorexia nervosa: a mixed-methods study.

PURPOSE: Limited research has explored conceptualisations of health and healthy eating in orthorexia nervosa (ON). This mixed-methods study aimed to investigate how 'health' and 'healthy eating' are conceptualised by individuals at risk for ON. This study examined the potential relationships between health anxiety, beliefs about health controllability and orthorexic symptomatology in our broader sample. METHODS: A total of 362 participants took a survey on health anxiety (measured with the HAQ), beliefs about the controllability of one's own health (IMHLC) and ON symptomatology (E-DOS and EHQ). Participants 'at risk' for ON (n = 141), also completed an online qualitative survey about conceptualisations of health and healthy eating. Qualitative data were analysed using thematic analysis (part A). The PROCESS macro for SPSS was used for the quantitative analysis (part B). RESULTS: Conceptualisations of health and healthy eating were complex. Four themes were generated from our qualitative data: 'health is more than thin ideals', 'healthy food equals healthy mind', 'a body that works for you' and 'taking control of your body'. Our quantitative analysis revealed that health anxiety and beliefs in health controllability independently predicted ON symptomatology. CONCLUSION: A richer understanding of what health means in the context of ON is important, given the centrality of this concept to the proposed classification of this disordered eating style. Our findings highlight that both health anxiety and health controllability are important targets for future investigation, given their potential relevance to the aetiology and treatment of ON. LEVEL OF EVIDENCE: Level V, based on a descriptive study.

The use of digital technologies by people with mild-to-moderate dementia during the COVID-19 pandemic: A positive technology perspective.

A growing body of research has shown that people with dementia are using digital technologies to enhance lived experience. The COVID-19 pandemic has brought new digital opportunities and challenges and so provides a unique opportunity to understand how people with dementia have adapted to this new digital landscape. Semi-structured interviews were conducted with 19 people with dementia and analysed thematically. We generated five themes, showing how participants used digital means to combat the stresses of the pandemic by facilitating social connection, self-actualisation, enhanced well-being and by assisting with activities of daily life. These technologies helped to reduce isolation, provide access to support groups, create opportunities for cognitive stimulation and self-development, and engendered a sense of identity at a time of perceived loss. Despite these benefits, participants also reported challenges regarding cognitive fatigue and usability issues. We recommend that training on how to use digital technologies is co-produced with people with dementia and designers engage with the voices of people with dementia throughout the design process. In turn, this could promote the social connectedness, well-being and self-worth of people with dementia.

#BetterHealth: A qualitative analysis of reactions to the UK government's better health campaign.

This study examined reactions to the UK government's Better Health campaign through a thematic analysis of tweets. Four themes were generated: Embracing Better Health; There is no Better Health without mental health; Inconsistent messaging; Only a surface-level solution. Findings suggest the campaign is problematic, given its lack of consideration for mental health and wider societal factors that contribute to obesity. The campaign could exacerbate mental health difficulties for individuals with eating disorders due to its focus on weight and perceived fat-shaming approach. Recommendations are made to develop future campaigns that avoid negative public responses, minimise harms, and maximise intended benefits.

"It is the only constant in what feels like a completely upside down and scary world": Living with an eating disorder during COVID-19 and the importance of perceived control for recovery and relapse.

The COVID-19 pandemic has had a profound, negative impact on the lives and wellbeing of much of the population, and it can raise additional challenges for individuals with eating disorders (EDs). During early stages of the UK lockdown, individuals reported disruptions to many aspects of their lives, including reduced feelings of control and serious concerns over the impact of the pandemic on ED symptoms and/or recovery. This study applied a mixed methods online survey to collect responses from 58 individuals (age 16-65yrs) with lived experience of EDs. Data was collected across two time points (April 2020 and June 2020) to explore the ongoing impacts of the pandemic on this population. The results suggest that higher perceptions of general, external control may be associated with ED recovery. Quantitative results show that individuals who reported recovering from their ED since the first time point, also reported significant increases in perceived control (compared to individuals who had relapsed or whose ED status was unchanged). Thematic analysis generated two themes: ED behaviours as an 'auxiliary control mechanism', and loss of auxiliary control after lockdown. Individuals who experienced less perceived control reported a tendency to rely upon eating disorder behaviours as an auxiliary coping mechanism, i.e., diminished external control was directed inwards and replaced with controlling their own behaviour. The preliminary results suggest that perceived control may be a significant factor in ED recovery. Individuals with EDs may be at significant risk of detrimental impacts on their recovery and wellbeing because of the pandemic reducing peoples' sense of control. These preliminary findings highlight the need for further research in this area, including investigation around potential interventions based upon strengthening perceptions of control to promote ED recovery.

The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media.

A diagnosis of dementia in midlife can be challenging, causing losses or changes in a person's identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users' perspectives. We employed a narrative model of identity to examine why people with dementia use Twitter and what challenges they face. Interviews were conducted with 11 younger people with dementia and analysed thematically. Participants used Twitter to counter a loss of identity through community membership and by regaining a sense of purpose. They sought to redefine dementia identities by challenging stigma and campaigning for social change. The character limit of tweets facilitated narrative through which participants preserved their identities. These findings suggest that Twitter could be an important source of post-diagnostic support for people with young-onset dementia. However, there are some risks as Twitter was sometimes a hostile environment for individuals who did not present in a 'typical' manner, or faced technical difficulties because of their symptoms. In the future, platform developers could work with people with dementia to make Twitter more accessible for this group.

'Getting back to normality seems as big of a step as going into lockdown': the impact of the COVID-19 pandemic on people with early to middle stage dementia.

People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used 'the shrinking world' theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the 'shrinking world' effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

Exploring the impact of the COVID-19 pandemic and UK lockdown on individuals with experience of eating disorders.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic may raise unique challenges for individuals with experience of eating disorders. Many factors have potential for detrimental impacts on psychological wellbeing and eating disorder recovery, including: Disruption to living situations, 'social distancing' restrictions, difficult access to healthcare, and societal changes to food behaviours and technology usage. To date, little is known on the impact of the pandemic on this population, particularly within the UK. METHOD: A mixed-methods online survey was developed for the purpose of this study. Data was collected from 129 individuals currently experiencing, or in recovery from, an eating disorder during the early stages of the UK pandemic lockdown. Participants were aged between 16 and 65 years, with 121 participants identifying as female, 7 male and 1 participant preferring not to disclose their gender. RESULTS: Findings suggest that the pandemic is having a profound, negative impact upon individuals with experience of eating disorders. Eight key themes were generated: Disruption to living situation, increased social isolation and reduced access to usual support networks, changes to physical activity rates, reduced access to healthcare services, disruption to routine and perceived control, changes to relationship with food, increased exposure to triggering messages, and positive outcomes. The results suggest detrimental impacts on psychological wellbeing including decreased feelings of control, increased feelings of social isolation, increased rumination about disordered eating, and low feelings of social support. CONCLUSIONS: Individuals with eating disorders are at significant risk of negative impacts of the pandemic. There is a vital need for interventions to support this population. Inequalities in healthcare provision were identified, emphasising a need for a more cohesive approach to remote treatment across UK healthcare services. Positive aspects of technology use were identified but the results suggest a need to address and/or limit the potential for negative impacts of public messages around food and exercise behaviours, and to co-design technologies with end-users to facilitate effective treatment.