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.项目摘要/摘要 为阿尔茨海默病和相关痴呆(ADRD)患者提供护理具有重要意义 身体和心理社会成本，有必要进行干预以支持照顾者的健康和生活质量 (QOL)。然而，有效的干预需要对影响负担的因素有细致入微的理解 沿着护理轨迹。吞咽困难在其对照顾者负担的贡献方面被严重忽视。 (吞咽障碍)，高达93%的ADRD患者会发生这种情况。虽然我们之前的工作已经 表明吞咽困难是情绪和身体负担的独立预测指标 对于异种老年人群体的照顾者，目前没有照顾的标准 将吞咽困难的教育和支持，包括内容和时间安排，纳入与ADRD相关的 干预措施。其目标是将积极主动的吞咽困难相关照顾者减负纳入 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 干预设计需要什么(目标)。具体地说，这项研究的目标是(A)量化 吞咽困难对ADRD患者家庭照顾者负担的影响 轨迹(早期、中期和晚期疾病)，以及(B)表征照顾者的缓和效果 吞咽困难相关照顾者负担的知识、准备、能力和感知支持 接受护理的人在吞咽困难的轨迹上的生活质量(没有吞咽困难，吞咽困难，很少或没有饮食 饮食改变引起的吞咽困难)。使用通过自我报告和调查获得的数据， 温和的多元回归模型将检验吞咽困难的功能指标之间的关系 地位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中的作用 和吞咽困难相关的负担和生活质量。成功完成此工作将确定其他可修改的内容 与ADRD相关的照顾者负担的贡献者和潜在的行动机制。结果将直接 告知开发一种新的、基于证据的干预措施，以减轻照顾者负担的各个方面 与ADRD的吞咽困难治疗相关，从而提供与家庭干预的独特机会 更早和更主动地，改善，甚至可能阻止，这些方面的发展 随着时间的推移，负担会越来越重。最终，减轻与吞咽困难相关的负担，这是一种非常普遍的 ADRD的后果，提供了一种新的和未被探索的战略，以促进健康和生活质量 ADRD的照顾者和患者。