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How healthcare professionals can support older LGBTQ+ people living with dementia

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Abstract

Older lesbian, gay, bisexual, trans, queer and others (LGBTQ+) people living with dementia have specific needs related to their sexual orientation and identity that should be addressed to maintain their personhood. They may face challenges in health and social care settings, such as heteronormativity and lack of awareness of older LGBTQ+ needs. Service provision for older LGBTQ+ people with dementia is lacking. Healthcare professionals' attitudes towards older LGBTQ+ people with dementia are often poor and there is a clear need for better training, while increased knowledge and awareness would help to challenge the concept of heteronormativity. This article explores some of the needs of older LGBTQ+ people with dementia, the role of legislation and regulation and how healthcare professionals can provide support.

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... LGBT past experiences profoundly affected help-seeking behaviour. Some LGBT caregivers experienced legal discrimination and homophobia earlier in life, leading them to adopt and maintain a closeted existence and resist accessing support services (Harper, 2019). Other LGBT caregivers benefitted from the effects of transformational events like the Stonewall riots, Gay Rights movement, and legalisation of same-sex marriage (McGovern, 2014). ...
... Often, LGBT relationships are not identified because questions about sexuality are not asked during assessments (National Dementia Action Alliance, 2017). Because of the limited visibility in services, despite being the experts in the person's wishes, LGBT caregivers may be excluded from important life-making legal decisions such as Advance Care Planning (ACP), Advanced Decision to Refuse Treatment (ADRT) and Do Not Attempt Resuscitation (DNAR) (Adelman, 2016;Cousins et al., 2021;Fredriksen-Goldsen et al., 2018;Harper, 2019). even when the LGBT relationship is legally recognised, through marriage or civil union, some caregivers are challenged by original family members on the grounds of their same-sex relationship (Barrett et al., 2015). ...
... Concerted effort in delivering training for statutory, non-statutory and voluntary support services would increase opportunities for LGBT caregivers to access services and receive prompt support (Harper, 2019;McGovern, 2014). Therefore, friendliness (i.e. ...
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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.
... It is relevant to pay special attention to people with dementia that are younger or come from the LGBTQIA + community or have a migration background or belong to an ethnic minority group. These are populations that not only face the dementia-specific challenges but also encounter other differences, such as aggravated access to healthcare for people from ethnic minorities, heteronormative healthcare services that are not suitable for people from the LGBTQIA + community, lack of healthcare services for younger people with dementia, and therefore have additional needs [13,37,38]. A further important aspect is the role of governments in the care of people with dementia and family carers. ...
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Background Dementia is a disease that impacts people with dementia, their families, and the healthcare system. In 2018, the number of people with dementia in the EU, the European Free Trade Association (EFTA), and the UK was estimated to be 9.1 million. National dementia strategies and publications by organisations such as Alzheimer Europe outline how dementia-specific care should be designed. This study aims to provide insights into existing formal care structures, models of good practise, and gaps in dementia-specific care for people with dementia in 17 European countries. Methods The research is based on guided interviews with country-specific care experts. A mixed-methods approach with a combination of open and closed questions was used. All interviews were recorded and transcribed verbatim based on the transcription rules of Kuckarts (2010). For data evaluation, the qualitative content analysis model of Mayring (2014) was used. Results In all 17 countries, efforts for dementia-friendly care and models of good care practise exist. However, there are large differences between European countries regarding the spread of dementia-specific services. In nine countries (Bulgaria, Finland, Italy, Liechtenstein, Luxembourg, the Netherlands, Norway, Sweden, the UK), there are already nationwide structures, while in five countries (Belgium, Greece, Ireland, Portugal, Romania), services are only available in certain regions. In three countries (Austria, Denmark, Germany) dementia-specific outpatient services are widespread nationwide, whereas inpatient services are not. Simultaneously, in all countries, areas with major care gaps exist. Several European states have an urgent need for action concerning the expansion of the provision of dementia-specific services, the reduction of regional differences regarding the provision of care, the elimination of barriers to access to care, the dementia-friendliness of services, and the participation of people with dementia and their relatives in care and research. Conclusions To reduce the existing structural inequalities in care between and within European countries, and to establish quality-related minimum standards in the care of people with dementia, transnational concepts are needed. The EU, in cooperation with care planners, research institutions, care providers, and patient organisations, should develop European care guidelines or dementia plans that contain concrete measures, schedules, and budgets.
... Having lived through decades in which their sexuality and/or gender identities were viewed as unnatural, deviant or criminal, LGBT+ people with dementia may avoid seeking out health and social care when they need it (McPhail and Fulop, 2016). When they do use health services, some LGBT+ people may choose to hide their sexuality and/or gender identity to protect themselves (Birch, 2009;Peel and McDaid, 2015;Harper, 2019). They may also experience deep-seated concern about whether they will accidentally disclose their LGBT+ identity as their cognitive ability declines (Birch, 2009;Barrett et al., 2015aBarrett et al., , 2015bCousins et al., 2020). ...
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Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about their experiences, the ways in which their lives have been investigated, to inform future research, policy and practice. Using an established scoping review methodology, we identified seven papers that reported empirical research on the lived experience of LGBT+ people with dementia and their care partners. Only a single study reported on in two of the papers included people who were trans. This in itself reveals how rarely LGBT+ people are asked to speak about how dementia has shaped their lives in academic research. Our reflexive thematic analysis indicates that LGBT+ people with dementia and their care partners endure overlapping forms of disadvantage. This results in heightened experiences of fear and discrimination, lack of services and compounded social isolation. Importantly, while dementia was embodied as interference and loss by LGBT+ people, it was their gender and sexuality differences that provided solace, even in the face of disadvantage. Importantly, people's relationships with LGBT+ identities were framed as fundamental for safety, resilience and wellbeing, rather than a complicating or confounding factor in living with dementia.
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This volume collects twenty-two published and unpublished chapters on a variety of topics related directly to human rights, justice, and the common good. The first nine date from 1970 through to 2007. They begin with a study — in dialectic with Dworkin's earlier lecture on the same themes — of the bearing of contemporary legal and political theory on the incorporation of a declaration of rights and freedoms in British law. There follow chapters on place of rights, and of duties to oneself, in Kant's moral and legal theory and some contemporary interpreters of Kant; on the application classical conceptions of distributive justice to modern problems; on the emergence of the ideal of government limited by, inter alia, respect for human rights, and contemporary distortions of the ideal that are proposed by Rawls, Dworkin, and followers of theirs (not least in relation to marriage); on the place of civic virtues and respect for diverse persons in constitutional order; and two chapters on the great question of migration rights and the legitimacy of national boundaries preventing free and equal migration. Part Two groups three chapters on the justice of punishment, concluding with the mature statement of retribution's place as punishment's formative justifying aim, in engagement especially with Nietzsche's ‘genealogy of morals’. Part Three surveys just way theory in its historic development and current shape. Parts Four, Five, and Six each group three chapters: on autonomy, justice, and euthanasia; on autonomy, justice, and human reproduction; and on marriage in its relation to justice and the common good.
Article
More women than ever before are participating in a diverse array of sports. However, at the same time, this popularity accentuates the femininity of these sportswomen, protecting the "image" of women's sports. The underlying message is that athleticism and femininity are contradictory, and females have to go out of their way to show that they can be athletic and be socially accepted. Kolnes' (1995) concept of heterosexuality as an organizing principle in women's sport provides the foundation for understanding the social construction of females in sport. Generally, women who appear heterosexually feminine are privileged over women perceived as masculine. Consequences of nonconformity to hegemonic femininity in sport often include sexist and heterosexist discrimination. This leads many sportswomen to emphasize feminine characteristics to avoid prejudice and discrimination. However, females perceived as too feminine are then sexualized and trivialized, leaving women to carefully balance athleticism with hegemonic femininity. However, in less traditional sport settings, females are resisting, challenging, and transforming expectations of hegemonic femininity. © 2001 National Association for Physical Education in Higher Education.
‘We see it as being heterosexualised, being put into a care home’: gender, sexuality and housing/care preferences among older LGB individuals in the UK
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Doing gender, doing heteronormativity: ‘gender normals,’ transgender people, and the social maintenance of heterosexuality
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Dementia Reconsidered: The Person Comes First
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Safe to Be Me: Meeting the Needs of Older Lesbian, Gay, Bisexual and Transgender People Using Health and Social Care Services
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Microaggressions in Everyday Life: Race, Gender, and Sexual Orientation
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Older People in Care Homes: Sex, Sexuality and Intimate Relationships: An RCN Discussion And Guidance Document for the Nursing Workforce
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