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Prognostic and Predictive Factors in Early Alzheimer's Disease: A Systematic Review. 早期阿尔茨海默病的预后和预测因素:系统回顾
Q3 Psychology Pub Date : 2024-02-16 eCollection Date: 2024-01-01 DOI: 10.3233/ADR-230045
Maria João Garcia, Regina Leadley, Janine Ross, Sasha Bozeat, Gabrielle Redhead, Oskar Hansson, Takeshi Iwatsubo, Nicolas Villain, Jeffrey Cummings

Background: Alzheimer's disease (AD) causes progressive decline of cognition and function. There is a lack of systematic literature reviews on prognostic and predictive factors in its early clinical stages (eAD), i.e., mild cognitive impairment due to AD and mild AD dementia.

Objective: To identify prognostic factors affecting eAD progression and predictive factors for treatment efficacy and safety of approved and/or under late-stage development disease-modifying treatments.

Methods: Databases were searched (August 2022) for studies reporting prognostic factors associated with eAD progression and predictive factors for treatment response. The Quality in Prognostic Factor Studies tool or the Cochrane risk of bias tool were used to assess risk of bias. Two reviewers independently screened the records. A single reviewer performed data extraction and quality assessment. A second performed a 20% check. Content experts reviewed and interpreted the data collected.

Results: Sixty-one studies were included. Self-reporting, diagnosis definition, and missing data led to high risk of bias. Population size ranged from 110 to 11,451. Analyses found data indicating that older age was and depression may be associated with progression. Greater baseline cognitive impairment was associated with progression. APOE4 may be a prognostic factor, a predictive factor for treatment efficacy and predicts an adverse response (ARIA). Elevated biomarkers (CSF/plasma p-tau, CSF t-tau, and plasma neurofilament light) were associated with disease progression.

Conclusions: Age was the strongest risk factor for progression. Biomarkers were associated with progression, supporting their use in trial selection and aiding diagnosis. Baseline cognitive impairment was a prognostic factor. APOE4 predicted ARIA, aligning with emerging evidence and relevant to treatment initiation/monitoring.

背景:阿尔茨海默病(AD)会导致认知能力和功能逐渐下降。目前尚缺乏关于早期临床阶段(eAD),即AD所致轻度认知障碍和轻度AD痴呆的预后和预测因素的系统文献综述:目的:确定影响 eAD 进展的预后因素,以及已批准和/或处于后期开发阶段的改变病情疗法的疗效和安全性的预测因素:在数据库中检索(2022 年 8 月)报告与 eAD 进展相关的预后因素和治疗反应预测因素的研究。采用预后因素研究质量工具或Cochrane偏倚风险工具评估偏倚风险。两名审稿人独立筛选记录。一名审稿人负责数据提取和质量评估。第二位审稿人进行 20% 的检查。内容专家对收集到的数据进行了审查和解释:结果:共纳入 61 项研究。自我报告、诊断定义和数据缺失导致偏倚风险较高。研究对象人数从 110 到 11,451 不等。分析发现,有数据表明,高龄和抑郁可能与病情进展有关。更严重的基线认知障碍与病情进展有关。APOE4 可能是一个预后因素、治疗效果的预测因素和不良反应(ARIA)的预测因素。生物标志物(CSF/血浆p-tau、CSF t-tau和血浆神经丝光)的升高与疾病进展有关:结论:年龄是疾病进展的最大风险因素。结论:年龄是病情恶化的最大风险因素。生物标志物与病情恶化相关,支持将其用于试验选择和辅助诊断。基线认知障碍是一个预后因素。APOE4可预测ARIA,这与新出现的证据一致,并与治疗启动/监测相关。
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引用次数: 0
Causal Relationship Between Ferritin and Neuropsychiatric Disorders: A Two-Sample Mendelian Randomization Study 铁蛋白与神经精神疾病之间的因果关系:双样本孟德尔随机研究
Q3 Psychology Pub Date : 2024-02-16 DOI: 10.3233/adr-230136
Wenxian Sun, Cuibai Wei
Background: Previous observational research has indicated a correlation between ferritin levels and neuropsychiatric disorders, although the causal relationship remains uncertain. Objective: The objective of this study was to investigate the potential causal link between plasma ferritin levels and neuropsychiatric disorders. Methods: A two-sample Mendelian randomization (MR) study was conducted, wherein genetic instruments associated with ferritin were obtained from a previously published genome-wide association study (GWAS). Summary statistics pertaining to neuropsychiatric disorders were derived from five distinct GWAS datasets. The primary MR analysis employed the inverse variance weighted (IVW) method and was corroborated by additional methods including MR-Egger, weighted median, simple mode, and weighted mode. Sensitivity analyses were employed to identify potential pleiotropy and heterogeneity in the results. Results: The fixed effects IVW method revealed a statistically significant causal relationship between plasma ferritin level and the occurrence of Alzheimer’s disease (odds ratio [OR] = 1.06, 95% confidence interval [CI]: 1.00–1.12, p = 0.037), as well as Parkinson’s disease (OR = 1.06, 95% CI: 1.00–1.13, p = 0.041). Various sensitivity analyses were conducted, which demonstrated no substantial heterogeneity or pleiotropy. Conversely, no compelling evidence was found to support a causal association between ferritin and amyotrophic lateral sclerosis, schizophrenia, or major depressive disorder. Conclusions: This MR study provides evidence at the genetic level for a causal relationship between plasma ferritin and an increased risk of Alzheimer’s disease and Parkinson’s disease. The exact genetic mechanisms underlying this connection necessitate further investigation.
背景:以往的观察性研究表明,铁蛋白水平与神经精神疾病之间存在相关性,但其因果关系仍不确定。研究目的本研究旨在调查血浆铁蛋白水平与神经精神疾病之间的潜在因果关系。研究方法进行了一项双样本孟德尔随机化(MR)研究,从先前发表的全基因组关联研究(GWAS)中获得了与铁蛋白相关的遗传工具。与神经精神疾病有关的汇总统计数据来自五个不同的 GWAS 数据集。主要的磁共振分析采用了逆方差加权(IVW)方法,并通过其他方法(包括磁共振-艾格、加权中位数、简单模式和加权模式)进行了证实。敏感性分析用于确定结果中潜在的多义性和异质性。结果固定效应 IVW 方法显示,血浆铁蛋白水平与阿尔茨海默病(几率比 [OR] = 1.06,95% 置信区间 [CI]:1.00-1.12,p = 0.037)和帕金森病(OR = 1.06,95% 置信区间 [CI]:1.00-1.13,p = 0.041)的发生之间存在统计学意义上的显著因果关系。我们进行了各种敏感性分析,结果表明没有实质性的异质性或多义性。相反,没有发现令人信服的证据支持铁蛋白与肌萎缩侧索硬化症、精神分裂症或重度抑郁症之间存在因果关系。结论:这项磁共振研究提供了基因层面的证据,证明血浆铁蛋白与阿尔茨海默病和帕金森病风险增加之间存在因果关系。这种关系的确切遗传机制还需要进一步研究。
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引用次数: 0
Characteristics of Changes in Caregiver Burden during Follow-up at a Memory Clinic: A Retrospective Cohort Study 记忆门诊随访期间照顾者负担变化的特征:回顾性队列研究
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230069
Hajime Takechi, Hiroshi Yoshino, Megumi Suzuki, Akiko Maeda, S. Suzumura, Eiko Kamiya
Background: Because dementia is a long-term condition, the appropriate involvement of health-care professionals is considered important. However, little is known about the factors associated with changes in family caregiver burden. Objective: To clarify changes in family caregiver burden and associated factors during follow-up at a memory clinic. Methods: A retrospective cohort study was conducted, enrolling 495 pairs of patients with dementia or mild cognitive impairment and their family caregivers. A total of 120 pairs completed the second evaluation. The caregiver burden was assessed using the Zarit Burden Interview (ZBI). Data at the initial visit and after an average follow-up of about 2 years were compared and analyzed. Results: At initial visit, the patients’ mean age, Mini-Mental State Examination (MMSE) and ZBI scores were 78.6±5.6 years, 23.3±3.5, and 22.6±16.7, respectively. At follow-up, MMSE scores decreased (21.4±4.5, p < 0.001), but ZBI scores remained similar (22.5±13.6). When the difference in ZBI scores between the two time points was defined as ΔZBI, and the related factors were analyzed by multiple regression analysis, ZBI scores at the initial visit, start of psychotropic drug, and decrease of neuropsychiatric symptoms were identified as significant factors (p < 0.001, p = 0.003, p < 0.001, respectively). A significant negative correlation was found between ZBI scores at the initial visit and ΔZBI (r = –0.588, p < 0.001). Conclusions: These findings suggest the importance of assessing changes in the burden experienced by family caregivers during the disease follow-up.
背景:由于痴呆症是一种长期疾病,因此医疗保健专业人员的适当参与非常重要。然而,人们对与家庭照顾者负担变化相关的因素知之甚少。研究目的明确记忆诊所随访期间家庭照顾者负担的变化及相关因素。方法:进行回顾性队列研究:进行了一项回顾性队列研究,共招募了 495 对痴呆症或轻度认知障碍患者及其家庭照顾者。共有 120 对完成了第二次评估。使用扎里特负担访谈法(ZBI)对照顾者的负担进行了评估。对初次访问和平均随访约 2 年后的数据进行了比较和分析。结果显示初诊时,患者的平均年龄、迷你精神状态检查(MMSE)和 ZBI 评分分别为 78.6±5.6 岁、23.3±3.5 分和 22.6±16.7 分。随访时,MMSE 评分下降(21.4±4.5,p < 0.001),但 ZBI 评分保持相似(22.5±13.6)。将两个时间点之间的 ZBI 分数差值定义为 ΔZBI,并通过多元回归分析对相关因素进行分析,发现初次就诊时的 ZBI 分数、开始使用精神药物和神经精神症状的减少是显著的因素(分别为 p < 0.001、p = 0.003、p < 0.001)。初次就诊时的 ZBI 分数与 ΔZBI 之间存在明显的负相关(r = -0.588,p < 0.001)。结论:这些研究结果表明,在疾病随访期间评估家庭照顾者的负担变化非常重要。
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引用次数: 0
Understanding the Perspectives and Needs of Latinx Caregivers of Persons with Alzheimer’s Disease in the Appalachians: An Interpretive Phenomenological Approach 了解阿巴拉契亚地区拉美裔老年痴呆症患者护理者的观点和需求:诠释现象学方法
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230108
Arelis Moore, Nicole J. Davis, Madeline Dolins, Ethan Barkley, Ann Reese, Kinsey Meggett, Melissa J. Bailey-Taylor
Background: Alzheimer’s disease and related dementias (ADRD) disproportionately impact Latinx and other communities of color in the United States. The challenges for patients with ADRD and their informal caretakers can be attributed, in part, to the gaps that exist within health care services and systems. Objective: To understand the perspectives of barriers, beliefs, knowledge, and needs for the Latinx informal caregivers that take care of relatives with ADRD in the Upstate of South Carolina, region of Appalachia. Methods: This study was approved by the GHS-Prisma Health and Clemson University IRB, Study #Pro00086707. In-depth phone interviews were conducted with a sample of Latinx informal caregivers. A descriptive and interpretive phenomenological approach was used for analysis. Participants were recruited through community partnerships with local organizations. Results: Salient themes identified in this study included the relevance of caregiver’s degree of awareness about the disease and a perspective of Alzheimer’s disease as a progressive and degenerative disease. Critical moments identified encompassed challenges related to patient engagement with the outside world, their attitudes, and behaviors, as well as caregiver-related challenges with access to culturally and linguistically relevant resources needed to provide proper care. Caregivers identified several culturally relevant coping strategies used and motivators in providing care for their relatives with ADRD. Conclusions: Linguistically and culturally sensitive programs and resources that account for knowledge, assets, and needs of Latinx informal caregivers of ADRD patients are needed to improve the quality of care and decrease disparities in health outcomes for Latinx older adults.
背景:阿尔茨海默病和相关痴呆症(ADRD)对美国拉美裔和其他有色人种社区的影响尤为严重。ADRD 患者及其非正式看护者所面临的挑战可部分归因于医疗保健服务和系统中存在的差距。目标:了解阿巴拉契亚地区南卡罗来纳州上州照顾 ADRD 患者亲属的拉丁裔非正式护理人员对障碍、信念、知识和需求的看法。研究方法本研究获得了 GHS-Prisma Health 和克莱姆森大学 IRB(研究编号:Pro00086707)的批准。研究人员对拉美裔非正式护理人员进行了深入的电话访谈。采用描述性和解释性现象学方法进行分析。参与者是通过与当地组织的社区合作招募的。研究结果本研究确定的突出主题包括照顾者对疾病的认识程度以及阿尔茨海默病是一种渐进性和退行性疾病的观点。研究发现的关键时刻包括患者与外界接触、态度和行为方面的挑战,以及护理人员在获取提供适当护理所需的文化和语言相关资源方面的挑战。护理人员指出了在为患有 ADRD 的亲属提供护理时所使用的几种与文化相关的应对策略和激励因素。结论:为了提高护理质量,减少拉美裔老年人在健康结果方面的差异,需要考虑到拉美裔 ADRD 患者非正式护理者的知识、资产和需求的对语言和文化敏感的计划和资源。
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引用次数: 0
Validity and Reliability Study of Online Cognitive Tracking Software (BEYNEX) 在线认知跟踪软件(BEYNEX)的有效性和可靠性研究
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230117
Nilgün Çınar, Sude Aslan Kendirli, Miruna Florentina Ateş, Ezgi Yakupoğlu, Ebru Akbuğa, Naci Emre Bolu, F. Karalı, T. Okluoğlu, Nazlı Gamze Bülbül, Elif Bayindir, Kamil Tolga Atam, Enis Hisarlı, Sarp Akgönül, Oğulcan Bagatır, Emre Sahiner, Bora Orgen, Türker Ahmet Hasan Sahiner
Background: Detecting cognitive impairment such as Alzheimer’s disease early and tracking it over time is essential for individuals at risk of cognitive decline. Objective: This research aimed to validate the Beynex app’s gamified assessment tests and the Beynex Performance Index (BPI) score, which monitor cognitive performance across seven categories, considering age and education data. Methods: Beynex test cut-off scores of participants (n = 91) were derived from the optimization function and compared to the Montreal Cognitive Assessment (MoCA) test. Validation and reliability analyses were carried out with data collected from an additional 214 participants. Results: Beynex categorization scores showed a moderate agreement with MoCA ratings (weighted Cohen’s Kappa = 0.48; 95% CI: 0.38–0.60). Calculated Cronbach’s Alpha indicates good internal consistency. Test-retest reliability analysis using a linear regression line fitted to results yielded R∧2 of 0.65 with a 95% CI: 0.58, 0.71. Discussion: Beynex’s ability to reliably detect and track cognitive impairment could significantly impact public health, early intervention strategies and improve patient outcomes.
背景:及早发现阿尔茨海默病等认知功能障碍并进行长期跟踪,对于有认知功能衰退风险的人来说至关重要。研究目的本研究旨在验证 Beynex 应用程序的游戏化评估测试和 Beynex 性能指数 (BPI) 评分,该评分可监测七个类别的认知性能,并考虑年龄和教育数据。研究方法通过优化功能得出参与者(n = 91)的 Beynex 测试临界分数,并与蒙特利尔认知评估(MoCA)测试进行比较。对另外 214 名参与者的数据进行了验证和可靠性分析。结果显示Beynex分类得分与MoCA评分显示出中等程度的一致性(加权科恩卡帕=0.48;95% CI:0.38-0.60)。计算得出的 Cronbach's Alpha 显示出良好的内部一致性。使用线性回归线对结果进行重测可靠性分析,得出 R∧2 为 0.65,95% CI 为 0.58,0.71。讨论结果Beynex 能够可靠地检测和跟踪认知障碍,这将对公共卫生、早期干预策略和改善患者预后产生重大影响。
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引用次数: 0
Validity and Reliability Study of Online Cognitive Tracking Software (BEYNEX) 在线认知跟踪软件(BEYNEX)的有效性和可靠性研究
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230117
Nilgün Çınar, Sude Aslan Kendirli, Miruna Florentina Ateş, Ezgi Yakupoğlu, Ebru Akbuğa, Naci Emre Bolu, F. Karalı, T. Okluoğlu, Nazlı Gamze Bülbül, Elif Bayindir, Kamil Tolga Atam, Enis Hisarlı, Sarp Akgönül, Oğulcan Bagatır, Emre Sahiner, Bora Orgen, Türker Ahmet Hasan Sahiner
Background: Detecting cognitive impairment such as Alzheimer’s disease early and tracking it over time is essential for individuals at risk of cognitive decline. Objective: This research aimed to validate the Beynex app’s gamified assessment tests and the Beynex Performance Index (BPI) score, which monitor cognitive performance across seven categories, considering age and education data. Methods: Beynex test cut-off scores of participants (n = 91) were derived from the optimization function and compared to the Montreal Cognitive Assessment (MoCA) test. Validation and reliability analyses were carried out with data collected from an additional 214 participants. Results: Beynex categorization scores showed a moderate agreement with MoCA ratings (weighted Cohen’s Kappa = 0.48; 95% CI: 0.38–0.60). Calculated Cronbach’s Alpha indicates good internal consistency. Test-retest reliability analysis using a linear regression line fitted to results yielded R∧2 of 0.65 with a 95% CI: 0.58, 0.71. Discussion: Beynex’s ability to reliably detect and track cognitive impairment could significantly impact public health, early intervention strategies and improve patient outcomes.
背景:及早发现阿尔茨海默病等认知功能障碍并进行长期跟踪,对于有认知功能衰退风险的人来说至关重要。研究目的本研究旨在验证 Beynex 应用程序的游戏化评估测试和 Beynex 性能指数 (BPI) 评分,该评分可监测七个类别的认知性能,并考虑年龄和教育数据。研究方法通过优化功能得出参与者(n = 91)的 Beynex 测试临界分数,并与蒙特利尔认知评估(MoCA)测试进行比较。对另外 214 名参与者的数据进行了验证和可靠性分析。结果显示Beynex分类得分与MoCA评分显示出中等程度的一致性(加权科恩卡帕=0.48;95% CI:0.38-0.60)。计算得出的 Cronbach's Alpha 显示出良好的内部一致性。使用线性回归线对结果进行重测可靠性分析,得出 R∧2 为 0.65,95% CI 为 0.58,0.71。讨论结果Beynex 能够可靠地检测和跟踪认知障碍,这将对公共卫生、早期干预策略和改善患者预后产生重大影响。
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引用次数: 0
Characteristics of Changes in Caregiver Burden during Follow-up at a Memory Clinic: A Retrospective Cohort Study 记忆门诊随访期间照顾者负担变化的特征:回顾性队列研究
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230069
Hajime Takechi, Hiroshi Yoshino, Megumi Suzuki, Akiko Maeda, S. Suzumura, Eiko Kamiya
Background: Because dementia is a long-term condition, the appropriate involvement of health-care professionals is considered important. However, little is known about the factors associated with changes in family caregiver burden. Objective: To clarify changes in family caregiver burden and associated factors during follow-up at a memory clinic. Methods: A retrospective cohort study was conducted, enrolling 495 pairs of patients with dementia or mild cognitive impairment and their family caregivers. A total of 120 pairs completed the second evaluation. The caregiver burden was assessed using the Zarit Burden Interview (ZBI). Data at the initial visit and after an average follow-up of about 2 years were compared and analyzed. Results: At initial visit, the patients’ mean age, Mini-Mental State Examination (MMSE) and ZBI scores were 78.6±5.6 years, 23.3±3.5, and 22.6±16.7, respectively. At follow-up, MMSE scores decreased (21.4±4.5, p < 0.001), but ZBI scores remained similar (22.5±13.6). When the difference in ZBI scores between the two time points was defined as ΔZBI, and the related factors were analyzed by multiple regression analysis, ZBI scores at the initial visit, start of psychotropic drug, and decrease of neuropsychiatric symptoms were identified as significant factors (p < 0.001, p = 0.003, p < 0.001, respectively). A significant negative correlation was found between ZBI scores at the initial visit and ΔZBI (r = –0.588, p < 0.001). Conclusions: These findings suggest the importance of assessing changes in the burden experienced by family caregivers during the disease follow-up.
背景:由于痴呆症是一种长期疾病,因此医疗保健专业人员的适当参与非常重要。然而,人们对与家庭照顾者负担变化相关的因素知之甚少。研究目的明确记忆诊所随访期间家庭照顾者负担的变化及相关因素。方法:进行回顾性队列研究:进行了一项回顾性队列研究,共招募了 495 对痴呆症或轻度认知障碍患者及其家庭照顾者。共有 120 对完成了第二次评估。使用扎里特负担访谈法(ZBI)对照顾者的负担进行了评估。对初次访问和平均随访约 2 年后的数据进行了比较和分析。结果显示初诊时,患者的平均年龄、迷你精神状态检查(MMSE)和 ZBI 评分分别为 78.6±5.6 岁、23.3±3.5 分和 22.6±16.7 分。随访时,MMSE 评分下降(21.4±4.5,p < 0.001),但 ZBI 评分保持相似(22.5±13.6)。将两个时间点之间的 ZBI 分数差值定义为 ΔZBI,并通过多元回归分析对相关因素进行分析,发现初次就诊时的 ZBI 分数、开始使用精神药物和神经精神症状的减少是显著的因素(分别为 p < 0.001、p = 0.003、p < 0.001)。初次就诊时的 ZBI 分数与 ΔZBI 之间存在明显的负相关(r = -0.588,p < 0.001)。结论:这些研究结果表明,在疾病随访期间评估家庭照顾者的负担变化非常重要。
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引用次数: 0
The Paintings Reveal the Story: Case Study of a Well-Known Swedish Artist Suffering from Alzheimer’s Disease 画中的故事:瑞典著名艺术家阿尔茨海默病病例研究
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230134
Axel Holmbom Larsen, Elisabet Londos
Background: Creativity is a multifaceted, complex, activity, and as such is an overarching function of the brain rather than being confined to a specific structure or region. Alzheimer’s disease effects several cognitive domains involved in the creative process of producing art. Objective: We analyze the art of a well-known Swedish visual artist who suffered from Alzheimer’s disease to determine if, and in what way, his art and creative process might have been influenced by the disease. Methods: We compared his artistic process and artwork along with information from his spouse, medical r ecords, and cognitive tests as well as reviews of exhibitions written by art critics. Results: We show that not only did the artist continue to produce artwork well into a major decline in cognitive function, according to commonly used tests, but he could continue to do so for even longer with some assistance from his spouse. However, the artwork changed considerably as the disease progressed. We hypothesize that there is a substantial lack of representation of creative ability and function in cognitive tests. Conclusions: Signs of the Alzheimer’s disease can be seen in the early artwork if viewed by critics and those with more specialized knowledge into the artist’s production. Further analysis of the complex interaction between complex neural activities, such as artistic creativity, and cognitive diseases is warranted and might provide insight in the field of neurological degenerative disease.
背景:创造力是一项多方面的复杂活动,因此是大脑的一项总体功能,而不是局限于某个特定的结构或区域。阿尔茨海默病会影响艺术创作过程中涉及的多个认知领域。目的:我们分析了一位罹患阿尔茨海默病的瑞典著名视觉艺术家的艺术作品,以确定他的艺术和创作过程是否以及以何种方式受到了阿尔茨海默病的影响。研究方法我们比较了他的艺术创作过程和艺术作品、他的配偶提供的信息、医疗记录、认知测试以及艺术评论家撰写的展览评论。结果:我们发现,根据常用的测试,这位艺术家不仅在认知功能严重衰退后仍能继续创作艺术作品,而且在其配偶的帮助下,他还能继续创作更长时间。然而,随着病情的发展,他的艺术作品也发生了很大的变化。我们推测,认知测试在很大程度上缺乏对创造能力和功能的反映。结论如果评论家和对艺术家的创作有更多专业知识的人观看,可以从早期的艺术作品中看到老年痴呆症的迹象。我们有必要进一步分析复杂的神经活动(如艺术创造力)与认知疾病之间的复杂互动关系,这或许能为神经退行性疾病领域提供启示。
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引用次数: 0
Understanding the Perspectives and Needs of Latinx Caregivers of Persons with Alzheimer’s Disease in the Appalachians: An Interpretive Phenomenological Approach 了解阿巴拉契亚地区拉美裔老年痴呆症患者护理者的观点和需求:诠释现象学方法
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230108
Arelis Moore, Nicole J. Davis, Madeline Dolins, Ethan Barkley, Ann Reese, Kinsey Meggett, Melissa J. Bailey-Taylor
Background: Alzheimer’s disease and related dementias (ADRD) disproportionately impact Latinx and other communities of color in the United States. The challenges for patients with ADRD and their informal caretakers can be attributed, in part, to the gaps that exist within health care services and systems. Objective: To understand the perspectives of barriers, beliefs, knowledge, and needs for the Latinx informal caregivers that take care of relatives with ADRD in the Upstate of South Carolina, region of Appalachia. Methods: This study was approved by the GHS-Prisma Health and Clemson University IRB, Study #Pro00086707. In-depth phone interviews were conducted with a sample of Latinx informal caregivers. A descriptive and interpretive phenomenological approach was used for analysis. Participants were recruited through community partnerships with local organizations. Results: Salient themes identified in this study included the relevance of caregiver’s degree of awareness about the disease and a perspective of Alzheimer’s disease as a progressive and degenerative disease. Critical moments identified encompassed challenges related to patient engagement with the outside world, their attitudes, and behaviors, as well as caregiver-related challenges with access to culturally and linguistically relevant resources needed to provide proper care. Caregivers identified several culturally relevant coping strategies used and motivators in providing care for their relatives with ADRD. Conclusions: Linguistically and culturally sensitive programs and resources that account for knowledge, assets, and needs of Latinx informal caregivers of ADRD patients are needed to improve the quality of care and decrease disparities in health outcomes for Latinx older adults.
背景:阿尔茨海默病和相关痴呆症(ADRD)对美国拉美裔和其他有色人种社区的影响尤为严重。ADRD 患者及其非正式看护者所面临的挑战可部分归因于医疗保健服务和系统中存在的差距。目标:了解阿巴拉契亚地区南卡罗来纳州上州照顾 ADRD 患者亲属的拉丁裔非正式护理人员对障碍、信念、知识和需求的看法。研究方法本研究获得了 GHS-Prisma Health 和克莱姆森大学 IRB(研究编号:Pro00086707)的批准。研究人员对拉美裔非正式护理人员进行了深入的电话访谈。采用描述性和解释性现象学方法进行分析。参与者是通过与当地组织的社区合作招募的。研究结果本研究确定的突出主题包括照顾者对疾病的认识程度以及阿尔茨海默病是一种渐进性和退行性疾病的观点。研究发现的关键时刻包括患者与外界接触、态度和行为方面的挑战,以及护理人员在获取提供适当护理所需的文化和语言相关资源方面的挑战。护理人员指出了在为患有 ADRD 的亲属提供护理时所使用的几种与文化相关的应对策略和激励因素。结论:为了提高护理质量,减少拉美裔老年人在健康结果方面的差异,需要考虑到拉美裔 ADRD 患者非正式护理者的知识、资产和需求的对语言和文化敏感的计划和资源。
{"title":"Understanding the Perspectives and Needs of Latinx Caregivers of Persons with Alzheimer’s Disease in the Appalachians: An Interpretive Phenomenological Approach","authors":"Arelis Moore, Nicole J. Davis, Madeline Dolins, Ethan Barkley, Ann Reese, Kinsey Meggett, Melissa J. Bailey-Taylor","doi":"10.3233/adr-230108","DOIUrl":"https://doi.org/10.3233/adr-230108","url":null,"abstract":"Background: Alzheimer’s disease and related dementias (ADRD) disproportionately impact Latinx and other communities of color in the United States. The challenges for patients with ADRD and their informal caretakers can be attributed, in part, to the gaps that exist within health care services and systems. Objective: To understand the perspectives of barriers, beliefs, knowledge, and needs for the Latinx informal caregivers that take care of relatives with ADRD in the Upstate of South Carolina, region of Appalachia. Methods: This study was approved by the GHS-Prisma Health and Clemson University IRB, Study #Pro00086707. In-depth phone interviews were conducted with a sample of Latinx informal caregivers. A descriptive and interpretive phenomenological approach was used for analysis. Participants were recruited through community partnerships with local organizations. Results: Salient themes identified in this study included the relevance of caregiver’s degree of awareness about the disease and a perspective of Alzheimer’s disease as a progressive and degenerative disease. Critical moments identified encompassed challenges related to patient engagement with the outside world, their attitudes, and behaviors, as well as caregiver-related challenges with access to culturally and linguistically relevant resources needed to provide proper care. Caregivers identified several culturally relevant coping strategies used and motivators in providing care for their relatives with ADRD. Conclusions: Linguistically and culturally sensitive programs and resources that account for knowledge, assets, and needs of Latinx informal caregivers of ADRD patients are needed to improve the quality of care and decrease disparities in health outcomes for Latinx older adults.","PeriodicalId":73594,"journal":{"name":"Journal of Alzheimer's disease reports","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139798736","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Paintings Reveal the Story: Case Study of a Well-Known Swedish Artist Suffering from Alzheimer’s Disease 画中的故事:瑞典著名艺术家阿尔茨海默病病例研究
Q3 Psychology Pub Date : 2024-02-06 DOI: 10.3233/adr-230134
Axel Holmbom Larsen, Elisabet Londos
Background: Creativity is a multifaceted, complex, activity, and as such is an overarching function of the brain rather than being confined to a specific structure or region. Alzheimer’s disease effects several cognitive domains involved in the creative process of producing art. Objective: We analyze the art of a well-known Swedish visual artist who suffered from Alzheimer’s disease to determine if, and in what way, his art and creative process might have been influenced by the disease. Methods: We compared his artistic process and artwork along with information from his spouse, medical r ecords, and cognitive tests as well as reviews of exhibitions written by art critics. Results: We show that not only did the artist continue to produce artwork well into a major decline in cognitive function, according to commonly used tests, but he could continue to do so for even longer with some assistance from his spouse. However, the artwork changed considerably as the disease progressed. We hypothesize that there is a substantial lack of representation of creative ability and function in cognitive tests. Conclusions: Signs of the Alzheimer’s disease can be seen in the early artwork if viewed by critics and those with more specialized knowledge into the artist’s production. Further analysis of the complex interaction between complex neural activities, such as artistic creativity, and cognitive diseases is warranted and might provide insight in the field of neurological degenerative disease.
背景:创造力是一项多方面的复杂活动,因此是大脑的一项总体功能,而不是局限于某个特定的结构或区域。阿尔茨海默病会影响艺术创作过程中涉及的多个认知领域。目的:我们分析了一位罹患阿尔茨海默病的瑞典著名视觉艺术家的艺术作品,以确定他的艺术和创作过程是否以及以何种方式受到了阿尔茨海默病的影响。研究方法我们比较了他的艺术创作过程和艺术作品、他的配偶提供的信息、医疗记录、认知测试以及艺术评论家撰写的展览评论。结果:我们发现,根据常用的测试,这位艺术家不仅在认知功能严重衰退后仍能继续创作艺术作品,而且在其配偶的帮助下,他还能继续创作更长时间。然而,随着病情的发展,他的艺术作品也发生了很大的变化。我们推测,认知测试在很大程度上缺乏对创造能力和功能的反映。结论如果评论家和对艺术家的创作有更多专业知识的人观看,可以从早期的艺术作品中看到老年痴呆症的迹象。我们有必要进一步分析复杂的神经活动(如艺术创造力)与认知疾病之间的复杂互动关系,这或许能为神经退行性疾病领域提供启示。
{"title":"The Paintings Reveal the Story: Case Study of a Well-Known Swedish Artist Suffering from Alzheimer’s Disease","authors":"Axel Holmbom Larsen, Elisabet Londos","doi":"10.3233/adr-230134","DOIUrl":"https://doi.org/10.3233/adr-230134","url":null,"abstract":"Background: Creativity is a multifaceted, complex, activity, and as such is an overarching function of the brain rather than being confined to a specific structure or region. Alzheimer’s disease effects several cognitive domains involved in the creative process of producing art. Objective: We analyze the art of a well-known Swedish visual artist who suffered from Alzheimer’s disease to determine if, and in what way, his art and creative process might have been influenced by the disease. Methods: We compared his artistic process and artwork along with information from his spouse, medical r ecords, and cognitive tests as well as reviews of exhibitions written by art critics. Results: We show that not only did the artist continue to produce artwork well into a major decline in cognitive function, according to commonly used tests, but he could continue to do so for even longer with some assistance from his spouse. However, the artwork changed considerably as the disease progressed. We hypothesize that there is a substantial lack of representation of creative ability and function in cognitive tests. Conclusions: Signs of the Alzheimer’s disease can be seen in the early artwork if viewed by critics and those with more specialized knowledge into the artist’s production. Further analysis of the complex interaction between complex neural activities, such as artistic creativity, and cognitive diseases is warranted and might provide insight in the field of neurological degenerative disease.","PeriodicalId":73594,"journal":{"name":"Journal of Alzheimer's disease reports","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139860681","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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Journal of Alzheimer's disease reports
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