Influence of swallowing impairment on burden among caregivers of persons with Alzheimer's Disease and related dementias

吞咽障碍对阿尔茨海默病和相关痴呆症患者护理人员负担的影响

• 批准号: 10661428
• 负责人: Samantha Eve Shune
• 金额: $ 22.42万
• 依托单位: UNIVERSITY OF OREGON
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-05-15 至 2025-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10661428
• 关键词: Address; Alzheimer' s disease related dementia; Assessment tool; Behavior; Caregiver Burden; Caregiver support; Caregivers; Caring; Competence; Data; Deglutition; Deglutition Disorders; Dementia; Dependence; Development; Diagnosis; Diet; Diet Modification; Dimensions; Disease; Eating; Education; Elderly; Emotional; Ensure; Equipment and supply inventories; Evidence based intervention; Family; Family Caregiver; Foundations; Future; Goals; Health; Health Priorities; Health Promotion; High Prevalence; Impaired cognition; Impairment; International; Intervention; Knowledge; Measures; Modeling; Morbidity - disease rate; Older Population; Patient Self-Report; Persons; Phase; Quality of life; Readiness; Recommendation; Reporting; Research; Role; Safety; Severities; Severity of illness; Social support; Source; Specificity; Standardization; Surveys; Testing; Time; Work; care burden; care recipients; caregiving; clinical practice; cost; dementia care; effective intervention; experience; global deterioration scale; improved; mortality; novel; prevent; psychosocial; recruit; research study; screening; standard of care; therapy design

7. Project Summary/Abstract Providing care for persons with Alzheimer’s disease and related dementias (ADRD) comes with significant physical and psychosocial costs, necessitating interventions to support caregivers’ health and quality of life (QoL). Yet, effective intervention requires a nuanced understanding of the factors that impact the burden along the care trajectory. Crucially underexplored in its contribution to caregiver burden is dysphagia (swallowing impairment), which occurs in up to 93% of persons with ADRD. While our previous work has demonstrated that dysphagia is an independent predictor of emotional and physical burden across caregivers of heterogenous populations of older adults, there is currently no standard of care for incorporating dysphagia education and support, including content and timing, into ADRD-related interventions. With the goal of integrating proactive dysphagia-related caregiver burden reduction into standard clinical practices, this proposed Phase 0 research study will address the critical when (timing) and what (targets) needed for intervention design. Specifically, the objectives of this study are to (a) quantify dysphagia’s contribution to burden among family caregivers of persons with ADRD across the disease trajectory (early-, mid-, and late-stage disease), and (b) characterize the moderating effects of caregiver knowledge, preparedness, competence, and perceived support on dysphagia-related caregiver burden and care recipient QoL across the dysphagia trajectory (no dysphagia, dysphagia with minimal to no dietary modifications, and dysphagia with dietary modifications). Using data obtained via self-report and surveys, moderated multiple regression models will test the relationship between functional measures of dysphagia status and caregiver burden as well as the role of caregivers’ dysphagia-related knowledge and perceived preparedness, competence, and social support in moderating the relationship between dysphagia severity and dysphagia-related burden and QoL. Successful completion of this work will identify additional modifiable contributors to ADRD-related caregiver burden and potential mechanisms of action. The results will directly inform the development of a new, evidence-based intervention for reducing aspects of caregiver burden related to dysphagia management in ADRD and thus offer a unique opportunity to intervene with families earlier and proactively, ameliorating, and potentially even preventing, the development of these aspects of burden over time. Ultimately, reducing the burden associated with dysphagia, a highly prevalent consequence of ADRD, offers a novel and underexplored strategy to promote health and QoL among the caregivers of and persons with ADRD.

7. 项目总结/摘要 为阿尔茨海默病和相关痴呆症 (ADRD) 患者提供护理具有重大意义 身体和心理社会成本，需要采取干预措施来支持护理人员的健康和生活质量 (QoL) 然而，有效的干预需要对影响负担的因素有细致的了解。 在护理过程中，吞咽困难对护理人员负担的影响尚未得到充分研究。 （吞咽障碍），高达 93% 的 ADRD 患者会出现这种情况，而我们之前的研究发现。 吞咽困难是情绪和身体负担的独立预测因素 对于异质老年人群的照顾者来说，目前尚无照顾标准 将吞咽困难教育和支持（包括内容和时间安排）纳入与 ADRD 相关的内容 干预措施的目标是将主动吞咽困难相关的护理人员负担减轻纳入其中。 标准临床实践，这项拟议的 0 期研究将解决关键的时间（时间）和 具体而言，本研究的目标是 (a) 量化。 吞咽困难对 ADRD 患者的家庭照顾者造成的负担 轨迹（早期、中期和晚期疾病），以及 (b) 描述护理人员的调节作用 对吞咽困难相关的护理人员负担的知识、准备、能力和感知支持 护理接受者整个吞咽困难轨迹的生活质量（无吞咽困难、极少或没有饮食的吞咽困难） 使用通过自我报告和调查获得的数据， 调节多元回归模型将测试吞咽困难功能测量之间的关系 状况和照顾者负担以及照顾者吞咽困难相关知识和感知的作用 准备、能力和社会支持在调节吞咽困难严重程度之间的关系 成功完成这项工作将确定其他可修改的内容。 ADRD 相关的照顾者负担的贡献者和潜在的行动机制的结果将直接。 为制定新的、基于证据的干预措施提供信息，以减轻护理人员的负担 与 ADRD 吞咽困难管理相关，因此提供了与家人进行干预的独特机会 及早、主动地改善甚至可能预防这些方面的发展 随着时间的推移，减轻与吞咽困难相关的负担，这是一种非常普遍的现象。 ADRD 的后果，提供了一种新颖且尚未充分探索的策略来促进健康和生活质量 ADRD 患者的照顾者和患者。