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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

"It's no skin off my nose": why people take part in qualitative research.

In this article, the authors analyze participants' accounts of why they took part in a repeat-interview study exploring newly diagnosed patients' perceptions of diabetes service provision in Lothian, Scotland. The study involved three semistructured in-depth interviews with each patient (N = 40), which spanned a year. The authors provide a thematic discursive analysis of responses to the question, Can I ask you what made you decide to part in the study and why you've stayed involved over the past year? The main themes are (a) recruitment within health contexts ("the nurse said it would help"), (b) altruism ("if it can help somebody"), (c) qualitative research being seen as inherently innocuous ("nothing to lose"), and (d) therapeutic aspects of interviewing ("getting it off my chest"). The analysis contributes both to the qualitative literature about generic research participation and to a germinal literature exploring qualitative health research participation.

Lay perceptions of type 2 diabetes in Scotland: bringing health services back in.

The growing prevalence of type 2 diabetes is placing Scottish health services under considerable strain. Consequently, diabetes services are undergoing a major process of reorganisation, including the devolvement of routine diabetes care/diabetic review from secondary to primary healthcare settings. This qualitative study was devised to explore newly diagnosed type 2 diabetes patients' perceptions of their disease and the health services they receive at a time when this restructuring of services is taking place. The sample comprised 40 patients resident in Lothian, Scotland, who had diverse experiences of services, some receiving GP-based care only, others having varying contact with hospital diabetes clinics. In-depth interviews were undertaken with patients, three times at six monthly intervals over 1 year, enabling their experiences to be tracked at critical junctures during the post-diagnostic period. Disease perceptions and health service delivery were found to be mutually informing and effecting. Not only did (different types of) health service delivery influence the ways in which patients thought about and self-managed their disease, over time patients' disease perceptions also informed their expectations of, and preferences for, diabetes services. We thus argue that there is a need for a reconceptualisation within the medical social sciences to take into account the context of healthcare and the economic/policy factors that inform health service delivery when looking at patients' disease perceptions. We also discuss the logistical and ethical challenges of drawing upon patients' perspectives, preferences and views in the design and delivery of future health services.

Taking the biscuit? A discursive approach to managing diet in type 2 diabetes.

Adopting and maintaining a healthy diet is pivotal to diabetic regimens. Behavioural research has focused on strategies to modify/maintain healthy behaviours; thus 'compliance' and 'noncompliance' are operationalized by researchers. In contrast, discursive psychology focuses on the actions different accounts accomplish--in this case regarding diets. Using thematic discourse analysis, we examine dietary management talk in repeat-interviews with 40 newly diagnosed type 2 diabetes patients. Women in our study tended to construct dietary practices as an individual concern, while men presented food consumption as a family matter. Participants accounted for 'cheating' in complex ways that aim to accomplish, for instance, a compliant identity. Discursive psychology may facilitate fluidity in our understandings of dietary management, and challenge fixed notions of 'compliant' and 'non-compliant' diabetes patients.

Blood glucose self-monitoring in non-insulin-treated type 2 diabetes: a qualitative study of patients' perspectives.

BACKGROUND: Self-monitoring of blood glucose is controversial in the management of type 2 diabetes. Some research suggests that self-monitoring improves glycaemic control, whereas other research is sceptical about its value for people with type 2 diabetes who are not on insulin. Although blood glucose meters are widely available and used by this group, patients' own views are absent from the debate. AIM: To explore the pros and cons of glucose monitoring from the patients' perspectives. DESIGN OF STUDY: Qualitative repeat-interview study. SETTING: Patients were recruited from 16 general practices and three hospital clinics within four local healthcare cooperatives in Lothian, Scotland. METHOD: Interview data from 40 patients diagnosed with type 2 diabetes within the previous 6 months were analysed using thematic analysis informed by grounded theory. We report findings from round 1 and round 2 interviews. RESULTS: Glucose monitoring can heighten patients' awareness of the impact of lifestyle; for example, dietary choices, on blood glucose levels. Glucose monitoring amplifies a sense of 'success' or 'failure' about self-management, often resulting in anxiety and self-blame if glucose readings remain consistently high. Moreover, monitoring can negatively effect patients' self-management when readings are counter-intuitive. CONCLUSION: Our analysis highlights the importance of understanding the meanings that newly diagnosed patients attach to glucose self-monitoring. To maximise the positive effects of self-monitoring, health professionals should ensure that patients understand the purpose of monitoring and should clarify with patients how readings should be interpreted.

Diagnosis of type 2 diabetes: a qualitative analysis of patients' emotional reactions and views about information provision.

Research about diagnosis of chronic illness indicates this is an emotional time for patients. Information provision is especially salient for diabetes management. Yet current orthodoxy suggests that too much information at the time of diagnosis is unhelpful for patients. In this study, we used in-depth interviews with 40 newly diagnosed type 2 diabetic (T2DM) patients in Scotland, to explore their emotional reactions about diagnosis, and their views about information provision at the time of diagnosis. Data were analysed using a thematic approach. Our results showed three main 'routes' to diagnosis: 'suspected diabetes' route; 'illness' route; and 'routine' route. Those within the 'routine' route described the most varied emotional reactions to their diagnosis. We found that most patients, irrespective of their route to diagnosis, wanted more information about diabetes management at the time of diagnosis. We suggest that practitioners would benefit from being sensitive to the route patients follow to diagnosis, and prompt, simple but detailed advice about T2DM management would be helpful for newly diagnosed patients.