young-onset dementia

  • 文章类型: Journal Article
    背景:身体成分,血压,估计最大摄氧量(VO2max),肺功能,身体活动,肌肉结构,和内皮功能以前没有在年轻的痴呆患者中进行过检查。因此,这项研究测量了一个年轻的痴呆组的这些变量,将它们与年龄匹配的对照进行比较。
    方法:估计VO2max(通过Astrand-Rhyming检验),身体成分,血压,肺功能(通过肺活量测定),评估了肌肉结构(通过超声检查)和内皮功能(通过血流介导的扩张).使用ActiGraph加速度计测量7天的身体活动。
    结果:我们招募了33名参与者(16名年轻的痴呆症,17个控件)。年轻的痴呆组的股外侧肌的束长较短,在七天内久坐不动,并且完成了比对照组更少的中等强度体力活动(p=0.028,d=0.81;效果大,p=0.029,d=0.54;中等效果,p=0.014,d=0.97;效应大,分别用于成对比较)。配对比较表明,对于估计的VO2max,年轻发作性痴呆与对照组之间的p<0.05水平没有差异(尽管效应大小适中[d=0.66])。高度,体重,BMI,血压,轻微的身体活动,肺功能,肌肉厚度,悬念角度,或内皮功能。
    结论:这项研究强调了年轻痴呆患者和对照组之间的差异,强调需要多成分运动干预。未来的干预措施应针对肌肉结构,增加中等强度的体力活动,减少镇静,以改善生活质量和促进功能独立为目标。
    BACKGROUND: Body composition, blood pressure, estimated maximal oxygen uptake (VO2max), lung function, physical activity, muscle architecture, and endothelial function had not previously been examined in people with young onset dementia. Therefore, the study measured these variables in a young onset dementia group, compared them to age-matched controls.
    METHODS: Estimated VO2max (via the Astrand-Rhyming test), body composition, blood pressure, lung function (via spirometry), muscle architecture (via ultrasonography) and endothelial function (via flow mediated dilation) were assessed. Physical activity was measured using ActiGraph accelerometers for 7 days.
    RESULTS: We recruited 33 participants (16 young onset dementia, 17 controls). The young onset dementia group had shorter fascicle lengths of the vastus lateralis, were sedentary for longer over a seven-day period, and completed less moderate-vigorous physical activity than controls (p=0.028, d=0.81; large effect, p=0.029, d=0.54; moderate effect, and p=0.014, d=0.97; large effect, respectively for pairwise comparisons). Pairwise comparisons suggest no differences at the p<0.05 level between young onset dementia and controls for estimated VO2max (despite a moderate effect size [d=0.66]), height, body mass, BMI, blood pressure, light physical activity, lung function, muscle thickness, pennation angle, or endothelial function.
    CONCLUSIONS: This study highlights differences between people with young onset dementia and controls, underscoring the need for multicomponent exercise interventions. Future interventions should target muscle architecture, increase moderate-vigorous physical activity, and reduce sedentariness, with the goal of improving quality of life and promoting functional independence.
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  • 文章类型: Journal Article
    青年型痴呆(YOD)是指在65岁之前发生的痴呆,阿尔茨海默病是最常见的形式,给配偶照顾者带来了明显的挑战。
    本研究旨在调查中国育龄期患者配偶照顾者的独特经历,相对缺乏针对痴呆症的社区护理服务和初级医疗保健专业人员,以告知量身定制的支持服务发展。
    这项定性设计研究利用了对11名在社区中居住有YOD的配偶照顾者的半结构化访谈。采用传统的内容分析法对访谈数据进行分析。
    有限的针对痴呆症的医疗保健专业人员和较低的公众意识使诊断和接受YOD成为一段漫长而具有挑战性的旅程。配偶照顾者在寻求诊断时面临怀疑,加剧他们的负担和情绪压力。医疗保健专业人员的差异以及机构之间的合作不足使情况恶化。YOD显着影响家庭动态,并导致家庭内部情感交流的变化。围绕YOD的污名引起了配偶照顾者对子女在婚姻和职业方面的未来的担忧,强调遗传风险。
    在特定于痴呆症的社区护理服务和初级医疗保健专业人员有限且分布不均的情况下,在小学和社区两级整合支持服务对于处理社区中的青少年家庭至关重要。此外,提高公众对YD的认识可以促进更多的理解和支持环境,解决与受影响家庭面临的污名化相关的挑战,有助于增加对支持资源的投资,鼓励个人尽早寻求帮助。
    UNASSIGNED: Young-onset dementia (YOD) refers to dementia occurring before the age of 65, with Alzheimer\'s disease being the most common form, posing distinct challenges for spousal caregivers.
    UNASSIGNED: This study aims to investigate the unique experiences of spousal caregivers of persons with YOD in China, where dementia-specific community care services and primary healthcare professionals are relatively lacking, in order to inform the tailored support services development.
    UNASSIGNED: This qualitative-design study utilized semi-structured interviews with 11 spousal caregivers of persons with YOD dwelling in the community. Traditional content analysis was employed to analyze the interview data.
    UNASSIGNED: Limited dementia-specific healthcare professionals and low public awareness made diagnosing and accepting YOD a prolonged and challenging journey. Spousal caregivers faced skepticism when seeking diagnosis, exacerbating their burden and emotional stress. Disparities in healthcare professionals and insufficient collaboration between institutions worsened the situation. YOD significantly impacted family dynamics and led to changes in emotional communication within the family. The stigma surrounding YOD raised concerns among spousal caregivers about their children\'s future in marriage and career, emphasizing genetic risks.
    UNASSIGNED: In settings where dementia-specific community care services and primary healthcare professionals are limited and unevenly distributed, integrating support services at both the primary and community levels is crucial for families dealing with YOD in the community. Additionally, raising public awareness about YOD can foster a more understanding and supportive environment, addressing challenges related to stigma faced by affected families, contributing to increased investment in supporting resources, and encouraging individuals to seek help early on.
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  • 文章类型: Journal Article
    背景:青年型(YOD)和晚发性痴呆(LOD)患者在临床需求和疾病轨迹上的独特差异使痴呆姑息治疗具有独特性。有限的研究报道了YOD和LOD之间姑息治疗需求的差异,在YOD中引入姑息治疗的最佳时间点仍然存在争议。我们进行了系统评价,以总结围绕YOD姑息治疗的关键问题,并强调该相关领域中未满足的需求。
    方法:遵循系统评价和荟萃分析(PRISMA)指南的首选报告项目,我们在PubMed数据库中搜索了2000年1月至2022年7月期间发表的所有关于YOD姑息治疗的研究.
    结果:在确定的32条记录中,有8篇文章有资格列入。提取的前3个主题集中在(1)YOD和LOD之间的临床差异,(2)终末期YOD的症状和死亡原因,(3)早期高级护理计划(ACP)的重要性。YOD诊断通常会延迟,患有YOD的人的躯体合并症较少,但神经精神症状较多。更长的生存时间,和更恶性的疾病过程。当症状在年轻时开始时,患有YOD的人及其家人面临着独特的社会心理挑战。终末期YOD与LOD没有什么不同,患者患有广泛的身体和心理症状,需要缓解。早期启动ACP讨论在YOD中至关重要,因为疾病进展更快,影响认知和决策能力;然而,在YOD中完成ACP的比率仍然很低。
    结论:鉴于YOD中复杂的护理需求和更快的疾病轨迹,从诊断开始就应该考虑YOD的姑息治疗,并纳入常规痴呆症护理。
    BACKGROUND: The distinctive differences in clinical needs and disease trajectory between persons with young-onset (YOD) and late-onset dementia (LOD) make dementia palliative care unique. Limited studies have reported on the differences in palliative care needs between YOD and LOD, and the optimal time point to introduce palliative care in YOD remains controversial. We performed a systematic review to summarize key issues surrounding palliative care in YOD and highlight unmet needs in this pertinent area.
    METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we searched the PubMed database for all studies published between January 2000 and July 2022 that reported on palliative care in YOD.
    RESULTS: Of 32 records identified, 8 articles were eligible for inclusion. The top 3 themes extracted centered around (1) clinical differences between YOD and LOD, (2) symptoms and causes of death in end-stage YOD, and (3) the importance of early advanced care planning (ACP). YOD diagnosis is often delayed and persons with YOD have fewer somatic comorbidities but more neuropsychiatric symptoms, longer survival times, and a more malignant disease course. Persons with YOD and their families face unique psychosocial challenges when symptoms start at a younger age. End-stage YOD is not dissimilar to LOD where patients suffer from a broad spectrum of physical and psychological symptoms requiring palliation. Early initiation of ACP discussion is crucial in YOD given the more rapid progression of disease affecting cognition and decision-making capacity; however, rates of ACP completion in YOD remain low.
    CONCLUSIONS: Given the complex care needs and more rapid disease trajectory in YOD, palliative care in YOD should be considered from the time of diagnosis, and to be incorporated into routine dementia care.
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  • 文章类型: Journal Article
    世卫组织《痴呆症全球行动计划》指出,痴呆症的康复服务需要促进健康,减少残疾,并保持痴呆症患者的生活质量。当前服务,然而,稀缺,特别是对于患有年轻痴呆症(YOD)的人。这篇文章,由国际多学科痴呆症专家小组撰写,提供了三个部分的概述,以促进YOD康复服务的发展。首先,我们提供了有关早期阿尔茨海默病(EOAD)的当前循证康复疗法的综合知识,行为变异性额颞叶痴呆(bvFTD),原发性进行性失语症(PPA),和后皮质萎缩(PCA)。其次,我们讨论青少年康复服务的特点,在三大洲提供示例,说明如何将这些服务嵌入现有环境以及康复多学科团队的不同角色。最后,最后,我们强调了远程医疗在使患有YOD的人更容易获得康复服务方面的潜力。总的来说,有了这篇论文,我们的目标是鼓励临床线索开始在他们的服务中引入至少一些康复服务,利用现有资源,并在更广泛的多学科痴呆症专业社区的集体专业知识中寻求支持。
    The WHO Dementia Global Action Plan states that rehabilitation services for dementia are required to promote health, reduce disability, and maintain quality of life for those living with dementia. Current services, however, are scarce, particularly for people with young-onset dementia (YOD). This article, written by an international group of multidisciplinary dementia specialists, offers a three-part overview to promote the development of rehabilitation services for YOD. Firstly, we provide a synthesis of knowledge on current evidence-based rehabilitative therapies for early-onset Alzheimer\'s disease (EOAD), behavioural variant frontotemporal dementia (bvFTD), primary progressive aphasia (PPA), and posterior cortical atrophy (PCA). Secondly, we discuss the characteristics of rehabilitation services for YOD, providing examples across three continents for how these services can be embedded in existing settings and the different roles of the rehabilitation multidisciplinary team. Lastly, we conclude by highlighting the potential of telehealth in making rehabilitation services more accessible for people with YOD. Overall, with this paper, we aim to encourage clinical leads to begin introducing at least some rehabilitation into their services, leveraging existing resources and finding support in the collective expertise of the broader multidisciplinary dementia professional community.
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  • 文章类型: Journal Article
    背景:痴呆与老年人有关;然而,它也会影响年轻人,被称为青年型痴呆症(YOD),在65岁之前被诊断。我们旨在进行一项涉及中年妇女的回顾性队列研究,以调查病前抑郁与YOD发展之间的关系。
    方法:我们纳入了160万名年龄在40-60岁之间的女性,她们在韩国国家健康保险服务机构下接受了健康检查,并调查了抑郁症与YOD之间的关系。
    结果:患有抑郁症的女性患YOD的风险明显高于没有抑郁症的女性。在绝经前妇女中,抑郁症患者的风险增加了2.67倍,而患有抑郁症的绝经后女性的风险增加了2.50倍.初潮年龄晚(>16岁)和绝经年龄小(<40岁)与YOD风险增加相关。
    结论:中年妇女的抑郁是发生YOD的重要危险因素。了解生殖因素的作用可以帮助制定有针对性的治疗干预措施,以预防或延迟YOD。
    Dementia is associated with older adults; however, it can also affect younger individuals, known as young-onset dementia (YOD), when diagnosed before the age of 65 years. We aimed to conduct a retrospective cohort study involving middle-aged women to investigate the association between premorbid depression and YOD development.
    We included 1.6 million women aged 40-60 years who underwent health checkups under the Korean National Health Insurance Service and investigated the association between depression and YOD.
    Women with depression had a significantly higher risk of developing YOD than women without depression. Among premenopausal women, those with depression had a 2.67-fold increased risk, whereas postmenopausal women with depression had a 2.50-fold increased risk. Late age at menarche (> 16 years) and young age at menopause (< 40 years) was associated with an increased risk of YOD.
    Depression in middle-aged women is a significant risk factor for the development of YOD. Understanding the role of reproductive factors can aid in the development of targeted therapeutic interventions to prevent or delay YOD.
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  • 文章类型: Journal Article
    背景:患有年轻痴呆症的人及其护理伙伴面临一系列不良心理健康结果和社会孤立的风险。很少有干预措施旨在支持受年轻痴呆症影响的夫妇,这给年轻人带来了独特的社会心理挑战。
    方法:这项介入前-后混合方法试点研究旨在评估在线小组计划的可行性和可接受性,该计划适用于澳大利亚年轻发作的痴呆症患者及其在家中的护理伙伴。音乐与心理学和社会关系(MAPS)计划旨在解决:(1)与年轻痴呆症相关的挑战和变化;(2)应对和福祉。该计划涉及六个每周两小时的课程,由心理学家和音乐治疗师共同主持,和一个私人Facebook小组。通过项目后焦点小组评估可行性和可接受性的主要结果,与每对夫妇单独的反馈会议,和计划评估问卷。对焦点小组笔录和夫妇反馈会议的实地笔记进行了主题分析。我们还研究了MAPS在改善心理健康和社交联系方面的初步效用,使用定量的事前后措施。
    结果:五对夫妇完成了MAPS项目。最常见的痴呆类型是阿尔茨海默病。所有课程的参与者出勤率为87%。定性研究结果支持了该计划的可接受性,包括四个新兴主题:与具有共同经验的其他人联系;重新定义有关痴呆症的思想和感受;音乐作为治疗工具;以及MAPS的好处。
    结论:保留率高,定性发现和积极的计划评估表明,MAPS可能是一个有希望的,为受年轻痴呆影响的夫妇提供可行和可接受的方案。
    BACKGROUND: People living with young-onset dementia and their care-partners are at risk of a range of adverse mental health outcomes and social isolation. There are few interventions aimed at supporting couples affected by young-onset dementia, which poses unique psychosocial challenges for younger people.
    METHODS: This pre-post interventional mixed methods pilot study aimed to assess the feasibility and acceptability of an online group program for people with young-onset dementia and their care-partners living at home in Australia. The Music And Psychology and Social connections (MAPS) program aimed to address: (1) the challenges and changes associated with young-onset dementia; and (2) coping and wellbeing. The program involved six weekly two-hour sessions co-facilitated by a psychologist and music therapist, and a private Facebook group. The primary outcomes of feasibility and acceptability were assessed through a post-program focus group, separate individual feedback sessions with each couple, and a program evaluation questionnaire. Thematic analysis was conducted on the focus group transcripts and field notes from couple feedback sessions. We also examined the preliminary utility of MAPS in improving mental health and social connectedness, using quantitative pre-post-measures.
    RESULTS: Five couples completed the MAPS program. The most common dementia type was Alzheimer\'s Disease. Participant attendance was 87% across all sessions. Qualitative findings supported acceptability of the program with four emergent themes: being connected to others with shared experiences; reframing thoughts and feelings about dementia; music as a therapeutic tool; and benefits of MAPS.
    CONCLUSIONS: The high retention rate, qualitative findings and positive program evaluation suggest MAPS may be a promising, feasible and acceptable program for couples affected by young-onset dementia.
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  • 文章类型: Journal Article
    很少有研究研究痴呆症患者实施的家庭暴力(DV)的特征。我们根据警方报告的DV事件,概述了社区痴呆症患者实施的DV。
    在2005年1月至2016年12月的416,441个新南威尔士州(NSW)警察对DV事件的叙述中使用了一种文本挖掘方法,以提取提及痴呆症的感兴趣的人(POI)的信息。
    涉及痴呆的事件占总DV事件的比例相对较低(<1%)。在260起患有痴呆症的DV事件中,提到了POI,最常见的虐待类型是攻击(49.7%)和言语虐待(31.6%)。配偶是最大的受害者群体(50.8%),其次是儿童(8.8%)。身体虐待很常见,发生在82.4%的事件中,但伤势相对较轻。虽然武器很少使用,他们参与了5%的事件,主要是75岁及以上的POIs。同样,POI主要年龄在75岁以上(60%),然而,与该年龄组报告的痴呆患病率相比,年龄<65岁人群的比例相对较高(20.8%).
    这项研究表明,一些由报告的痴呆症患者实施的DV病例足以引起警方的介入。这突出了作为整体管理和支持家庭成员的一部分,需要积极讨论暴力的可能性,特别是那些照顾年轻痴呆症患者的人。
    UNASSIGNED: Few studies have examined the characteristics of domestic violence (DV) committed by people with dementia. We provide an overview of DV perpetrated by people with dementia in the community based on police reports of attendances at DV events.
    UNASSIGNED: A text mining method was used on 416,441 New South Wales (NSW) police narratives of DV events from January 2005 to December 2016 to extract information for Persons of Interest (POIs) with mentions of dementia.
    UNASSIGNED: Events involving those with dementia accounted for a relatively low proportion of total DV events (<1%). Of the 260 DV events with a dementia mention for the POI, the most common abuse types were assault (49.7%) and verbal abuse (31.6%). Spouses were the largest group of victims (50.8%) followed by children (8.8%). Physical abuse was common, occurring in 82.4% of events, but injuries were relatively mild. Although weapons were infrequently used, they were involved in 5% of events, mostly by POIs aged 75 years and older. Similarly, the POIs were mainly aged 75+ years (60%), however the proportion of those aged <65 was relatively high (20.8%) compared to the reported prevalence of dementia in that age group.
    UNASSIGNED: This study demonstrates that some cases of DV perpetrated by people with reported dementia are significant enough to warrant police involvement. This highlights the need to proactively discuss the potential for violence as part of the holistic management and support family members, particularly those caring for people with young-onset dementias.
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  • 文章类型: Journal Article
    背景:全球约有390万人患有青年痴呆。与年轻发作的痴呆症相关的症状提出了与财务相关的明显挑战,employment,和家庭。为了提供量身定制的支持,重要的是获得有关为年轻痴呆患者提供的正式支持的知识.因此,本文旨在描述对瑞典年轻痴呆患者的正式支持以及影响这种支持的因素.
    方法:这项回顾性研究使用了2021年至2022年瑞典认知/痴呆症登记处(SveDem)的65岁以下人群(n=284)的数据。SveDem的成立是为了监测瑞典痴呆症护理的质量。获得参与者的特征,包括年龄,性别,痴呆诊断,MMSE,药物,住宿,和护理设置。描述性统计和逻辑回归用于测试参与者特征与诊断后支持之间的关联。
    结果:通常向年轻痴呆患者(90.1%)及其家人(78.9%)提供信息和教育支持。大约一半的样本被提供与痴呆症护士联系(49.3%),顾问(51.4%),或需要评估员(47.9%)。少数(28.5%)提供了认知辅助。根据参与者特征进行了六个回归模型,以预测提供支持的可能性。支持不是按年龄预测的,性别,在家的孩子们,住宿,或药物。较低的MMSE评分(p<.05)和家庭帮助(p<.05)与需求评估员的提供显着相关。一起生活是向家庭提供信息和教育支持的重要预测因素(p<.01)。护理设置显着预测(p<.01)提供的信息和教育支持的人和家庭成员,以及与顾问的联系。
    结论:这项研究表明,在某些痴呆症护理领域,年轻痴呆症患者可能缺乏正式支持。尽管大多数特征都得到了同等的支持,基于护理环境的差异突出了专门痴呆症护理的重要性。预诊断支持很少,这表明年轻痴呆症患者在诊断前获得这些服务的挑战。虽然我们的研究已经确定了需要改进的地方,我们建议进一步研究,以了解年轻痴呆患者不断变化的支持需求.
    BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support.
    METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support.
    RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor.
    CONCLUSIONS: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.
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  • 文章类型: Case Reports
    对年轻发作的痴呆的诊断可能对临床医生构成重大挑战。我们为一名年轻患者提供了一个非常不寻常的路易体痴呆表现。缺乏运动症状和他明显的冷漠推迟了他的诊断。根据正常的结构成像和他的表现的精神病学性质,他的症状被认为是由于抑郁症。进行了广泛的工作。HMPAO-SPECT提供了结构性神经退行性过程的证据。心脏MIBG证实了诊断。
    A diagnosis of young-onset dementia can pose a significant challenge for the clinician. We present a young patient with a very unusual presentation of Dementia with Lewy Bodies. The lack of motor symptoms and his marked apathy delayed his diagnosis. His symptoms were thought to be due to depression based on normal structural imaging and the psychiatric nature of his presentation. An extensive work-up was performed. Evidence of a structural neurodegenerative process was provided by the HMPAO-SPECT. Cardiac MIBG confirmed the diagnosis.
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  • 文章类型: Journal Article
    后皮质萎缩症(PCA)是一种罕见的年轻发作性痴呆,会导致早期的视觉空间和视觉感知缺陷。后皮质萎缩的症状特征导致受影响的患者需要非常特殊的护理,他们经常依赖非正式的照顾者(包括朋友和家人)。罕见的痴呆症支持小组对患者及其护理人员都很有用,可以帮助他们分享知识。心理教育,提供社会心理支持。尽管如此,这样的支持团体很少。这项研究的目的是检查PCA支持小组,以帮助患有PCA的人的护理人员。我们举办了一个结构化的心理教育支持小组,由四个会议组成,目的是提供教育,疾病管理策略,和同行支持。对护理人员的心理健康和生活质量进行了评估。我们的研究结果表明,支持小组的参与是一种积极的经历,并有助于增加护理人员的知识和促进社会联系。我们建议同伴支持小组可能对PCA患者及其照顾者都有益。我们建议进行未来的定量和定性研究,以进一步评估对PCA患者及其护理人员的健康促进益处,并评估它们在不同背景下的发展和实施。
    Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers\' mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.
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