Keeping the conversation going: How progressivity is prioritised in co-remembering talk between couples impacted by dementia.

This article explores how partners keep the conversation going with people living with dementia (PLWD) when speaking about shared memories. Remembering is important for PLWD and their families. Indeed, memory loss is often equated with identity loss. In conversation, references to shared past events (co-rememberings) can occasion interactional trouble if memories cannot be mutually recalled. This article analyses partners' interactional practices that enable progressivity in conversations about shared memories with a PLWD. In previous research, both informal and formal carers have reported that they can find interacting with PLWD difficult. Identifying practices used by partners is one way to begin addressing those difficulties. Analytical findings are based on over 26 hours of video data from domestic settings where partners have recorded their interactions with their spouse/close friend who is living with dementia. The focus is on 14 sequences of conversation about shared memories. We show how particular practices (candidate answers, tag questions and single-party memory of a shared event) structure the interaction to facilitate conversational progression. When partners facilitate conversational progressivity, PLWD are less likely to experience stalls in conversation. Our findings suggest the actual recall of memory is less relevant than the sense of shared connection resulting from the conversational activity of co-remembering, aiding maintenance of individual and shared identities. These findings have relevance for wider care settings.

Are dementia services and support organisations meeting the needs of Lesbian, Gay, Bisexual and Transgender (LGBT) caregivers of LGBT people living with dementia? A scoping review of the literature.

OBJECTIVES: More than 60% of people with dementia live at home, where assistance is usually provided by informal caregivers. Research on the experiences of the Lesbian, Gay, Bisexual and Transgender (LGBT) caregivers is limited. This scoping review of the literature synthesizes international evidence on support provision for the population of LGBT caregivers. METHODS: Eight electronic databases and Google Scholar were searched using terms including 'Dementia', 'LGBT' and 'Caregiver' for all types of articles, including empirical studies, grey literature and sources from charity/third sector/lobbying organisations. Article selection was performed by two raters. Data were analysed through deductive thematic analysis, and three themes were established a priori: Distinct experiences of LGBT caregivers; current barriers to support; strategies to overcome the current challenges. RESULTS: Twenty articles were included. Distinct experiences of LGBT caregivers included a loss of LGBT identity, the impact of historical events, families of choice, and disclosing LGBT identities. Current barriers to support included poor representation of LGBT caregivers in support services, negative attitudes of staff and reluctance of caregivers to seek support. Strategies to overcome the current challenges included staff awareness training and kite-marking inclusion. CONCLUSION: Limited cultural competency of staff and a subsequent reluctance to seek help have an impact on use of support services among LGBT caregivers. Implications for practice include the development of cost-effective, feasible, and acceptable inclusiveness training for services. Implications for policy include implementation in organisations of top-down agendas supporting staff to understand sexuality and non-heteronormative relationships in older age.

Extended trochanteric osteotomy: improving the access and reducing the risk in revision THA.

This review article presents a comprehensive literature review regarding extended trochanteric osteotomy (ETO).The history, rationale, biomechanical considerations as well as indications are discussed.The outcomes and complications as reported in the literature are presented, discussed and compared with our own practice.Based on the available evidence, we present our preferred technique for performing ETO, its fixation, as well as post-operative rehabilitation.The ETO aids implant removal and enhanced access. Reported union rate of ETO is high. The complications related to ETO are much less frequent than in cases when accidental intra-operative femoral fracture occurred that required fixation.Based on the literature and our own experience we recommend ETO as a useful adjunct in the arsenal of the revision hip specialist. Cite this article: EFORT Open Rev 2020;5:104-112. DOI: 10.1302/2058-5241.5.190005.

LGBT people and suicidality in youth: A qualitative study of perceptions of risk and protective circumstances.

Evidence suggests that lesbian, gay, bisexual and trans (LGBT) people are more likely to attempt to take their own lives in their youth when compared to heterosexual and/or cisgender people. This study draws on in-depth interviews with 17 LGBT individuals living in England, and explores the narratives used by participants to better understand their perceptions of risk and protective circumstances to explain suicide attempts in youth. Using a Goffman-informed thematic analysis, results identified three key themes that were linked to attempts to end life in youth. The first theme considers the conflicts resulting from first disclosure of sexual orientation and/or gender identity/trans status and being 'out' to others. The second theme explores participants' accounts of their concurrent mental health issues and how diagnoses of the mental health issues helped them make sense of their own experiences of attempted suicide. The final theme explores the experience of grieving over lost relationships and how that grief is received by others, including health professionals. Our results indicate that some LGBT individuals have effectively, although often arduously, navigated suicidal crises by utilising various approaches to coping. We provide a rich and layered picture of LGBT suicide risk in youth and potential resilience scenarios, although these are a reflection of our specific group of participants' experiences and realities. We argue that it is important to understand how LGBT individuals with a history of suicide attempts narrate and make sense of their experiences in early life and we suggest that the early negative experiences continue to have an effect on LGBT adults today.

Sociolegal and practice implications of caring for LGBT people with dementia.

The needs of lesbian, gay, bisexual and trans (LGBT) people with dementia are poorly recognised. This is due partly to assumptions that all older people are heterosexual or asexual. One quarter of gay or bisexual men and half of lesbian or bisexual women have children, compared with 90% of heterosexual women and men, which means LGBT older adults are more likely to reside in care homes. Older LGBT people may be unwilling to express their sexual identities in care settings and this can affect their care. Members of older people's informal care networks must be recognised to ensure their involvement in the lives of residents in care settings continues. However, healthcare professionals may not always realise that many LGBT people rely on their families of choice or wider social networks more than on their families of origin. This article explores sociolegal issues that can arise in the care of older LGBT people with dementia, including enabling autonomy, capacity and applying legal frameworks to support their identities and relationships. It also highlights implications for practice.

The impact of dementia on women internationally: An integrative review.

Women are disproportionately affected by dementia, both in terms of developing dementia and becoming caregivers. We conducted an integrative review of English language literature focusing on the issues affecting women in relation to dementia from an international perspective. The majority of relevant studies were conducted in high-income countries, and none were from low-income countries. The effects of caregiving on health, well-being, and finances are greater for women; issues facing women, particularly in low- and middle-income countries, need to be better understood. Research should focus on building resilience to help people adjust and cope long term.

Diagnostic communication in the memory clinic: a conversation analytic perspective.

OBJECTIVES: Whether and how patients should be told their dementia diagnosis, has been an area of much debate. While there is now recognition that early diagnosis is important for dementia care little research has looked at how dementia-related diagnostic information is actually verbally communicated. The limited previous research suggests that the absence of explicit terminology (e.g., use of the term Alzheimer's) is problematic. This paper interrogates this assumption through a conversation analysis of British naturalistic memory clinic interaction. METHOD: This paper is based on video-recordings of communication within a UK memory clinic. Appointments with 29 patients and accompanying persons were recorded, and the corpus was repeatedly listened to, in conjunction with the transcripts in order to identify the segments of talk where there was an action hearable as diagnostic delivery, that is where the clinician is evaluating the patient's condition. RESULTS: Using a conversation analytic approach this analysis suggests that diagnostic communication, which is sensitive and responsive to the patient and their carers, is not predicated on the presence or absence of particular lexical choices. There is inherent complexity regarding dementia diagnosis, especially in the 'early stages', which is produced through and reflected in diagnostic talk in clinical encounters. CONCLUSION: In the context of continuity of dementia care, diagnostic information is communicated in a way that conforms to intersubjective norms of minimizing catastrophic reactions in medical communication, and is sensitive to problems associated with 'insight' in terms of delivery and receipt or non-receipt of diagnosis.

'The living death of Alzheimer's' versus 'Take a walk to keep dementia at bay': representations of dementia in print media and carer discourse.

Understanding dementia is a pressing social challenge. This article draws on the 'Dementia talking: care conversation and communication' project which aims to understand how talk about, and to people living with dementia is constructed. In this article I draw on the construction of dementia manifest in two data sets - a corpus of 350 recent UK national newspaper articles and qualitative data derived from in-depth interviews with informal carers. These data were analysed using a thematic discursive approach. A 'panic-blame' framework was evident in much of the print media coverage. Dementia was represented in catastrophic terms as a 'tsunami' and 'worse than death', juxtaposed with coverage of individualistic behavioural change and lifestyle recommendations to 'stave off' the condition. Contrary to this media discourse, in carers' talk there was scant use of hyperbolic metaphor or reference to individual responsibility for dementia, and any corresponding blame and accountability. I argue that the presence of individualistic dementia 'preventative' behaviour in media discourse is problematic, especially in comparison to other more 'controllable' and treatable chronic conditions. Engagement with, and critique of, the nascent panic-blame cultural context may be fruitful in enhancing positive social change for people diagnosed with dementia and their carers.

'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services.

Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked 'Duties to Care' and 'Dementia Talking' projects, in this article we focus on British carers' talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a 'maze'; (2) services as overly limited - 'beyond our remit'; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.

Self-monitoring of blood glucose in Black Caribbean and South Asian Canadians with non-insulin treated Type 2 diabetes mellitus: a qualitative study of patients' perspectives.

BACKGROUND: To examine the views and current practice of SMBG among Black Caribbean and South Asian individuals with non-insulin treated Type 2 diabetes mellitus. METHODS: Twelve participants completed semi-structured interviews that were guided by the Health Belief Model and analyzed using thematic network analysis. RESULTS: The frequency of monitoring among participants varied from several times a day to once per week. Most participants expressed similar experiences regarding their views and practices of SMBG. Minor differences across gender and culture were observed. All participants understood the benefits, but not all viewed SMBG as beneficial to their personal diabetes management. SMBG can facilitate a better understanding and maintenance of self-care behaviours. However, it can trigger both positive and negative emotional responses, such as a sense of disappointment when high readings are not anticipated, resulting in emotional distress. Health care professionals play a key role in the way SMBG is perceived and used by patients. CONCLUSION: While the majority of participants value SMBG as a self-management tool, barriers exist that impede its practice, particularly its cost. How individuals cope with these barriers is integral to understanding why some patients adopt SMBG more than others.

'He was like a zombie': off-label prescription of antipsychotic drugs in dementia.

This paper explores the legal position of the off-label prescription of antipsychotic medications to people with dementia who experience behavioural and psychological symptoms of dementia (BPSD). Dementia is a challenging illness, and BPSD can be very difficult for carers to manage, with evidence that this contributes to carer strain and can result in the early institutionalisation of people with dementia. As a result, the prescription of antipsychotic and other neuroleptic medications to treat BPSD has become commonplace, in spite of these drugs being untested and unlicensed for use to treat older people with dementia. In recent years, it has become apparent through clinical trials that antipsychotic drugs increase the risk of cerebrovascular accident (stroke) and death in people with dementia. In addition, these types of medication also have other risk factors for people with dementia, including over-sedation and worsening of cognitive function. Drawing on recent questionnaire (n = 185), focus group (n = 15), and interview (n = 11) data with carers of people with dementia, this paper explores the law relating to off-label prescription, and the applicability of medical negligence law to cases where adverse events follow the use of antipsychotic medication. It is argued that the practice of off-label prescribing requires regulatory intervention in order to protect vulnerable patients.

Sex and diabetes: a thematic analysis of gay and bisexual men's accounts.

Around 50 per cent of men with diabetes experience erectile dysfunction. Much of the literature focuses on quality of life measures with heterosexual men in monogamous relationships. This study explores gay and bisexual men's experiences of sex and diabetes. Thirteen interviews were analysed and three themes identified: erectile problems; other 'physical' problems; and disclosing diabetes to sexual partners. Findings highlight a range of sexual problems experienced by non-heterosexual men and the significance of the cultural and relational context in which they are situated. The personalized care promised by the UK government should acknowledge the diversity of sexual practices which might be affected by diabetes.

Type 2 diabetes and dog walking: patients' longitudinal perspectives about implementing and sustaining physical activity.

BACKGROUND: Physical activity is particularly important for people with type 2 diabetes, as evidence suggests that any reduction in sedentary time is good for metabolic health. AIM: To explore type 2 diabetes patients' talk about implementing and sustaining physical activity. DESIGN OF STUDY: Longitudinal, qualitative study using repeat in-depth interviews with 20 patients over 4 years following clinical diagnosis. SETTING: Patients were recruited from 16 general practices and three hospitals across Lothian, Scotland. RESULTS: Discussion, and salience, of physical activity was marginal in patient accounts of their diabetes management. Patients claimed to have only received vague and non-specific guidance about physical activity from health professionals, and emphasised a perceived lack of interest and encouragement. Aside from walking, physical activities which were adopted tended to attenuate over time. Patients' accounts revealed how walking a dog assisted this kind of activity maintenance over time. Three main themes are highlighted in the analysis: 1) incidental walking; 2) incremental physical activity gains; and 3) augmenting physical activity maintenance. The problems arising from walking without a dog (for example, lack of motivation) are also examined. CONCLUSION: Asking patients about pet preferences might seem tangential to medical interactions. However, encouraging dog walking or identifying another interest that promotes a regular commitment to undertake physical activity may yield long-term health benefits.

Pregnancy loss in lesbian and bisexual women: an online survey of experiences.

BACKGROUND: Although pregnancy loss is a distressing health event for many women, research typically equates women's experiences of pregnancy loss to 'married heterosexual women's experiences of pregnancy loss'. The objective of this study was to explore lesbian and bisexual women's experiences of miscarriage, stillbirth and neonatal death. METHODS: This study analysed predominantly qualitative online survey data from 60 non-heterosexual, mostly lesbian, women from the UK, USA, Canada and Australia. All but one of the pregnancies was planned. Most respondents had physically experienced one early miscarriage during their first pregnancy, although a third had experienced multiple losses. RESULTS: The analysis highlights three themes: processes and practices for conception; amplification of loss; and health care and heterosexism. Of the respondents, 84% conceived using donor sperm; most used various resources to plan conception and engaged in preconception health care. The experience of loss was amplified due to contextual factors and the investment respondents reported making in impending motherhood. Most felt that their loss(es) had made a 'significant'/'very significant' impact on their lives. Many respondents experienced health care during their loss. Although the majority rated the overall standard of care as 'good'/'very good'/'outstanding', a minority reported experiencing heterosexism from health professionals. CONCLUSIONS: The implications for policy and practice are outlined. The main limitation was that the inflexibility of the methodology did not allow the specificities of women's experiences to be probed further. It is suggested that both coupled and single non-heterosexual women should be made more visible in reproductive health and pregnancy loss research.

Patients' perceptions and experiences of transitions in diabetes care: a longitudinal qualitative study.

OBJECTIVE: To examine patients' perceptions and experiences over time of the devolvement of diabetes care/reviews from secondary to primary health-care settings. DESIGN: Repeat in-depth interviews with 20 patients over 4 years. PARTICIPANTS AND SETTING: Twenty type 2 diabetes patients recruited from primary- and secondary-care settings across Lothian, Scotland. RESULTS: Patients' views about their current diabetes care were informed by their previous service contact. The devolvement of diabetes care/reviews to general practice was presented as a 'mixed blessing'. Patients gained reassurance from their perception that receiving practice-based care/reviews signified that their diabetes was well-controlled. However, they also expressed resentment that, by achieving good control, they received what they saw as inferior care and/or less-frequent reviews to others with poorer control. While patients tended to regard GPs as having adequate expertise to conduct their practice-based reviews, they were more ambivalent about nurses taking on this role. Opportunities to receive holistic care in general practice were not always realized due to patients seeing health-care professionals for diabetes management to whom they would not normally present for other health issues. CONCLUSIONS: It is important to educate patients about their care pathways, and to reassure them that frequency of reviews depends more on clinical need than location of care and that similar care guidelines are followed in hospital clinics and general practice. A patients' history of service contact may need to be taken into account in future studies of service satisfaction.

Ethical issues in neuroimaging health research: an IPA study with research participants.

Neuroimaging is increasingly used to understand conditions like stroke and epilepsy. However, there is growing recognition that neuroimaging can raise ethical issues. We used interpretative phenomenological analysis to analyse interview data pre-and post-scan to explore these ethical issues. Findings show participants can become anxious prior to scanning and the protocol for managing incidental findings is unclear. Participants lacked a frame of reference to contextualize their expectations and often drew on medical narratives. Recommendations to reduce anxiety include dialogue between researcher and participant to clarify understanding during consent and the use of a ;virtual tour' of the neuroimaging experience.

Shifting accountability: a longitudinal qualitative study of diabetes causation accounts.

We undertook a longitudinal qualitative study involving of 20 patients from Scotland who had type 2 diabetes. We looked at their perceptions and understandings of why they had developed diabetes and how, and why, their causation accounts had changed or remained stable over time. Respondents, all of whom were white, were interviewed four times over a 4-year period (at baseline, 6, 12 and 48 months). Their causation accounts often shifted, sometimes subtly, sometimes radically, over the 4 years. The experiential dimensions of living with, observing, and managing their disease over time were central to understanding the continuities and changes we observed. We also highlight how, through a process of removing, adding and/or de-emphasising explanatory factors, causation accounts could be used as "resources" to justify or enable present treatment choices. We use our work to support critiques of social cognition theories, with their emphasis upon beliefs being antecedent to behaviours. We also provide reflections upon the implications of our findings for qualitative research designs and sampling strategies.

Contextualising accounts of illness: notions of responsibility and blame in white and South Asian respondents' accounts of diabetes causation.

We undertook a secondary analysis of in-depth interviews with white (n = 32) and Pakistani and Indian (n = 32) respondents who had type 2 diabetes, which explored their perceptions and understandings of disease causation. We observed subtle, but important, differences in the ways in which these respondent groups attributed responsibility and blame for developing the disease. Whereas Pakistani and Indian respondents tended to externalise responsibility, highlighting their life circumstances in general and/or their experiences of migrating to Britain in accounting for their diabetes (or the behaviours they saw as giving rise to it), white respondents, by contrast, tended to emphasise the role of their own lifestyle 'choices' and 'personal failings'. In seeking to understand these differences, we argue for a conceptual and analytical approach which embraces both micro- (i.e. everyday) and macro- (i.e. cultural) contextual factors and experiences. In so doing, we provide a critique of social scientific studies of lay accounts/understandings of health and illness. We suggest that greater attention needs to be paid to the research encounter (that is, to who is looking at whom and in what circumstances) to understand the different kinds of contexts researchers have highlighted in presenting and interpreting their data.

Self monitoring of blood glucose in type 2 diabetes: longitudinal qualitative study of patients' perspectives.

OBJECTIVE: To explore views of patients with type 2 diabetes about self monitoring of blood glucose over time. DESIGN: Longitudinal, qualitative study. SETTING: Primary and secondary care settings across Lothian, Scotland. PARTICIPANTS: 18 patients with type 2 diabetes. MAIN OUTCOME MEASURES: Results from repeat in-depth interviews with patients over four years after clinical diagnosis. RESULTS: Analysis revealed three main themes-the role of health professionals, interpreting readings and managing high values, and the ongoing role of blood glucose self monitoring. Self monitoring decreased over time, and health professionals' behaviour seemed crucial in this: participants interpreted doctors' focus on levels of haemoglobin A(1c), and lack of perceived interest in meter readings, as indicating that self monitoring was not worth continuing. Some participants saw readings as a proxy measure of good and bad behaviour-with women especially, chastising themselves when readings were high. Some participants continued to find readings difficult to interpret, with uncertainty about how to respond to high readings. Reassurance and habit were key reasons for continuing. There was little indication that participants were using self monitoring to effect and maintain behaviour change. CONCLUSIONS: Clinical uncertainty about the efficacy and role of blood glucose self monitoring in patients with type 2 diabetes is mirrored in patients' own accounts. Patients tended not to act on their self monitoring results, in part because of a lack of education about the appropriate response to readings. Health professionals should be explicit about whether and when such patients should self monitor and how they should interpret and act upon the results, especially high readings.

The neuroimaging research process from the participants' perspective.

The aim of this study was to investigate participants' experiences of taking part in research conducted using fMRI or MEG procedures. Forty-four participants completed a questionnaire after taking part in either fMRI or MEG experiments; the questionnaire asked about experiences of and attitudes toward fMRI/MEG. Ten follow-up interviews were conducted to enable an in-depth analysis of these attitudes and experiences. The findings were generally positive: all participants thought fMRI and MEG were safe procedures, 93% would recommend participating in neuroimaging research to their friends and family, and participants were positive about participating in future neuroimaging research. However, some negative issues were identified. Some participants reported feeling nervous prior to scanning procedures, several participants reported side-effects after taking part, a number of participants were upset at being in a confined space and some participants did not feel confident about exiting the scanner in an emergency. Several recommendations for researchers are made, including a virtual tour of the scanning equipment during the consenting process in order to better prepare potential participants for the scanning experience and to minimize the potential psychological discomfort sometimes experienced in neuroimaging research.