{"title":"神经退行性疾病患者吞咽困难症状加重护理伙伴负担","authors":"Lauren Tabor Gray, Samantha Shune, Sarah Perry, Derek Kosty, Ashwini Namasivayam-MacDonald","doi":"10.1044/2025_AJSLP-24-00529","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Providing care for family members with neurodegenerative diseases entails significant physical and psychosocial costs, increasing caregiver burden. Limited research exists on the factors contributing to dysphagia-related burden, particularly across disease trajectories. This study aimed to (a) determine if dysphagia-related burden predicts general caregiver burden, (b) identify predictors of dysphagia-related burden, and (c) examine relationships between dysphagia severity, disease severity, and dysphagia-related burden.</p><p><strong>Method: </strong>Care partners (<i>N</i> = 211; 80% female; <i>M</i><sub>age</sub> = 60 ± 14 years) from clinics in Canada, New Zealand, and the United States participated. Care recipients included those with amyotrophic lateral sclerosis (ALS; <i>n</i> = 48), dementia (<i>n</i> = 110), and Parkinson's disease (PD; <i>n</i> = 53). General burden was measured using the Zarit Burden Interview, while dysphagia-related burden was assessed via the Caregiver Assessment of Reported Experiences with Swallowing Difficulties. Multiple regression analyses examined predictors of general and dysphagia-related burden and their relationships to dysphagia and disease severity.</p><p><strong>Results: </strong>Higher general burden was associated with female caregivers (β = -.19, <i>p</i> = .05), higher education (β = .16, <i>p</i> = .03), caring for someone with dementia (β = .36, <i>p</i> = .01), and greater dysphagia-related burden (β = .33, <i>p</i> = .01). Predictors of dysphagia-related burden included working caregivers (β = .15, <i>p</i> = .01), increased dysphagia symptoms (β = .77, <i>p</i> < .01), and caring for individuals with ALS or dementia (vs. PD; β = -.16, <i>p</i> = .02). Dysphagia burden varied by disease severity and diet tolerance (<i>p</i> < .01).</p><p><strong>Conclusions: </strong>Managing dysphagia independently contributes to caregiver burden, potentially increasing burnout and nonadherence to clinical recommendations. Early, proactive inquiry about dysphagia-related care partner burden and provision of support to minimize burden should be considered early in disease management.</p><p><strong>Supplemental material: </strong>https://doi.org/10.23641/asha.28843055.</p>","PeriodicalId":49240,"journal":{"name":"American Journal of Speech-Language Pathology","volume":" ","pages":"1-9"},"PeriodicalIF":2.3000,"publicationDate":"2025-05-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Dysphagia Symptoms Contribute to Greater Care Partner Burden in Neurodegenerative Disease.\",\"authors\":\"Lauren Tabor Gray, Samantha Shune, Sarah Perry, Derek Kosty, Ashwini Namasivayam-MacDonald\",\"doi\":\"10.1044/2025_AJSLP-24-00529\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>Providing care for family members with neurodegenerative diseases entails significant physical and psychosocial costs, increasing caregiver burden. Limited research exists on the factors contributing to dysphagia-related burden, particularly across disease trajectories. This study aimed to (a) determine if dysphagia-related burden predicts general caregiver burden, (b) identify predictors of dysphagia-related burden, and (c) examine relationships between dysphagia severity, disease severity, and dysphagia-related burden.</p><p><strong>Method: </strong>Care partners (<i>N</i> = 211; 80% female; <i>M</i><sub>age</sub> = 60 ± 14 years) from clinics in Canada, New Zealand, and the United States participated. Care recipients included those with amyotrophic lateral sclerosis (ALS; <i>n</i> = 48), dementia (<i>n</i> = 110), and Parkinson's disease (PD; <i>n</i> = 53). General burden was measured using the Zarit Burden Interview, while dysphagia-related burden was assessed via the Caregiver Assessment of Reported Experiences with Swallowing Difficulties. Multiple regression analyses examined predictors of general and dysphagia-related burden and their relationships to dysphagia and disease severity.</p><p><strong>Results: </strong>Higher general burden was associated with female caregivers (β = -.19, <i>p</i> = .05), higher education (β = .16, <i>p</i> = .03), caring for someone with dementia (β = .36, <i>p</i> = .01), and greater dysphagia-related burden (β = .33, <i>p</i> = .01). Predictors of dysphagia-related burden included working caregivers (β = .15, <i>p</i> = .01), increased dysphagia symptoms (β = .77, <i>p</i> < .01), and caring for individuals with ALS or dementia (vs. PD; β = -.16, <i>p</i> = .02). Dysphagia burden varied by disease severity and diet tolerance (<i>p</i> < .01).</p><p><strong>Conclusions: </strong>Managing dysphagia independently contributes to caregiver burden, potentially increasing burnout and nonadherence to clinical recommendations. Early, proactive inquiry about dysphagia-related care partner burden and provision of support to minimize burden should be considered early in disease management.</p><p><strong>Supplemental material: </strong>https://doi.org/10.23641/asha.28843055.</p>\",\"PeriodicalId\":49240,\"journal\":{\"name\":\"American Journal of Speech-Language Pathology\",\"volume\":\" \",\"pages\":\"1-9\"},\"PeriodicalIF\":2.3000,\"publicationDate\":\"2025-05-05\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"American Journal of Speech-Language Pathology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1044/2025_AJSLP-24-00529\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"American Journal of Speech-Language Pathology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1044/2025_AJSLP-24-00529","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY","Score":null,"Total":0}
引用次数: 0
摘要
目的：为患有神经退行性疾病的家庭成员提供护理需要大量的身体和心理成本，增加了护理者的负担。目前关于造成吞咽困难相关负担的因素的研究有限，特别是跨疾病轨迹的研究。本研究旨在(a)确定吞咽困难相关负担是否能预测一般照顾者负担，(b)确定吞咽困难相关负担的预测因素，以及(c)检查吞咽困难严重程度、疾病严重程度和吞咽困难相关负担之间的关系。方法：护理伴211例；80%的女性;年龄= 60±14岁)，分别来自加拿大、新西兰和美国的诊所。护理对象包括肌萎缩侧索硬化症(ALS；n = 48)、痴呆（n = 110）和帕金森病(PD；N = 53)。一般负担通过Zarit负担访谈来测量，而吞咽困难相关的负担通过护理人员对吞咽困难经历的评估来评估。多元回归分析检验了一般和吞咽困难相关负担的预测因素及其与吞咽困难和疾病严重程度的关系。结果：女性照顾者一般负担较高（β = -）。19, p = 0.05)，高等教育（β = 0.16, p = 0.03），照顾痴呆症患者（β = 0.36, p = 0.01），以及更大的吞咽困难相关负担（β = 0.33, p = 0.01）。吞咽困难相关负担的预测因子包括工作照顾者（β = 0.15, p = 0.01），吞咽困难症状增加（β = 0.77, p < 0.01），以及照顾ALS或痴呆患者(相对于PD；β = -。16, p = .02)。吞咽困难负担因疾病严重程度和饮食耐受性而异（p < 0.01）。结论：独立处理吞咽困难会增加护理人员的负担，潜在地增加倦怠和不遵守临床建议。在疾病管理的早期，应考虑对吞咽困难相关的护理伙伴负担进行早期、主动的询问，并提供支持以尽量减少负担。补充资料：https://doi.org/10.23641/asha.28843055。
Dysphagia Symptoms Contribute to Greater Care Partner Burden in Neurodegenerative Disease.
Purpose: Providing care for family members with neurodegenerative diseases entails significant physical and psychosocial costs, increasing caregiver burden. Limited research exists on the factors contributing to dysphagia-related burden, particularly across disease trajectories. This study aimed to (a) determine if dysphagia-related burden predicts general caregiver burden, (b) identify predictors of dysphagia-related burden, and (c) examine relationships between dysphagia severity, disease severity, and dysphagia-related burden.
Method: Care partners (N = 211; 80% female; Mage = 60 ± 14 years) from clinics in Canada, New Zealand, and the United States participated. Care recipients included those with amyotrophic lateral sclerosis (ALS; n = 48), dementia (n = 110), and Parkinson's disease (PD; n = 53). General burden was measured using the Zarit Burden Interview, while dysphagia-related burden was assessed via the Caregiver Assessment of Reported Experiences with Swallowing Difficulties. Multiple regression analyses examined predictors of general and dysphagia-related burden and their relationships to dysphagia and disease severity.
Results: Higher general burden was associated with female caregivers (β = -.19, p = .05), higher education (β = .16, p = .03), caring for someone with dementia (β = .36, p = .01), and greater dysphagia-related burden (β = .33, p = .01). Predictors of dysphagia-related burden included working caregivers (β = .15, p = .01), increased dysphagia symptoms (β = .77, p < .01), and caring for individuals with ALS or dementia (vs. PD; β = -.16, p = .02). Dysphagia burden varied by disease severity and diet tolerance (p < .01).
Conclusions: Managing dysphagia independently contributes to caregiver burden, potentially increasing burnout and nonadherence to clinical recommendations. Early, proactive inquiry about dysphagia-related care partner burden and provision of support to minimize burden should be considered early in disease management.
期刊介绍：
Mission: AJSLP publishes peer-reviewed research and other scholarly articles on all aspects of clinical practice in speech-language pathology. The journal is an international outlet for clinical research pertaining to screening, detection, diagnosis, management, and outcomes of communication and swallowing disorders across the lifespan as well as the etiologies and characteristics of these disorders. Because of its clinical orientation, the journal disseminates research findings applicable to diverse aspects of clinical practice in speech-language pathology. AJSLP seeks to advance evidence-based practice by disseminating the results of new studies as well as providing a forum for critical reviews and meta-analyses of previously published work.
Scope: The broad field of speech-language pathology, including aphasia; apraxia of speech and childhood apraxia of speech; aural rehabilitation; augmentative and alternative communication; cognitive impairment; craniofacial disorders; dysarthria; fluency disorders; language disorders in children; speech sound disorders; swallowing, dysphagia, and feeding disorders; and voice disorders.
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