Brighton and Sussex Medical School, University of Sussex, Brighton, UK.
Faculty of Medicine and Health Sciences, University of Nottingham, Nottingham, UK.
Int J Geriatr Psychiatry. 2024 Aug;39(8):e6135. doi: 10.1002/gps.6135.
How dementia affects lesbian, gay, bisexual, trans, queer people or those with other minoritised sexual/gender identities (LGBTQ+) is not well understood. Furthermore, existing research often excludes the voices of LGBTQ+ people living with dementia and focuses instead on their care partners. This study addresses this evidence gap by drawing on the ESRC/NIHR funded DETERMIND cohort, consisting of 940 newly diagnosed people with dementia, to explore the peri-diagnostic experiences of people living with dementia who identify as LGBTQ+.
We recruited five people (who identified as lesbian, gay or bisexual [LGB]) and completed semi-structured interviews with them and their partner caregivers (n = 3) discussing their experiences of (1) engaging with dementia health care services, (2) receiving a dementia diagnosis, and (3) the support they were offered after diagnosis. Interviews were shaped by the Candidacy Framework, a theoretical model for understanding accessibility of health services, and an inductive thematic analysis was employed to develop common themes.
Participants did not routinely disclose their LGBTQ+ identities to health service professionals, despite feeling this was an essential aspect of who they are. They relied on their resilience of overcoming previous experiences of lifetime discrimination to navigate complicated dementia care systems. The importance of 'chosen families' as informal support networks for LGBTQ+ people living with dementia was highlighted, particularly given the lack of formal care services they felt comfortable accessing. All participants were concerned about their future care needs and whether they would receive home-based or community-based support that respected their LGBTQ+ identities.
This study adds to the limited evidence base that can be used to inform future research, policy and practice seeking to address inequalities across the dementia care pathway. We only interviewed people who identified as LGB so generalizability to the whole LGBTQ+ population is limited, however our data suggest dementia health care professionals should encourage and support disclosures of LGBTQ+ identities so that inclusive care and support planning can be provided to LGBTQ+ people at every stage of dementia.
痴呆症如何影响女同性恋、男同性恋、双性恋、跨性别、酷儿或其他性少数/性别认同者（LGBTQ+）的情况尚不清楚。此外，现有的研究往往排除了患有痴呆症的 LGBTQ+人群的声音，而是专注于他们的照顾者。本研究通过利用 ESRC/NIHR 资助的 DETERMIND 队列来解决这一证据差距，该队列由 940 名新诊断的痴呆症患者组成，旨在探索认同 LGBTQ+的痴呆症患者在诊断前的经历。
我们招募了 5 名（自认为是女同性恋、男同性恋或双性恋[LGB]）患者及其伴侣照顾者（n=3），与他们一起进行了半结构化访谈，讨论了他们在以下方面的经历：（1）与痴呆症保健服务的互动，（2）获得痴呆症诊断，以及（3）他们在诊断后的支持。访谈是基于候选框架进行的，这是一个用于理解健康服务可及性的理论模型，采用了归纳主题分析来开发共同的主题。
尽管参与者认为这是他们的重要身份特征，但他们并没有向卫生服务专业人员常规披露其 LGBTQ+身份。他们依靠自己克服过去一生的歧视经历的韧性来应对复杂的痴呆症护理系统。“选择家庭”作为 LGBTQ+痴呆症患者的非正式支持网络的重要性得到了强调，特别是考虑到他们觉得可以接受的正规护理服务缺乏。所有参与者都担心他们未来的护理需求，以及他们是否会得到尊重其 LGBTQ+身份的家庭护理或社区护理。
本研究增加了可以用于为寻求解决痴呆症护理途径中的不平等问题的未来研究、政策和实践提供信息的有限证据基础。我们只采访了自认为是 LGB 的人，因此，我们的数据对整个 LGBTQ+人群的普遍性有限，但我们的数据表明，痴呆症保健专业人员应该鼓励和支持披露 LGBTQ+身份，以便在痴呆症的每个阶段为 LGBTQ+人群提供包容的护理和支持计划。
