The impact of music on well-being after diagnosis with Alzheimer's disease or its related dementias

音乐对阿尔茨海默病或其相关痴呆症诊断后的健康影响

• 批准号: 10806804
• 负责人: THERESA ANNE ALLISON
• 金额: $ 224.25万
• 依托单位: NORTHERN CALIFORNIA INSTITUTE/RES/EDU
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-30 至 2026-09-29
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10806804
• 关键词: Alzheimer' s Disease; Alzheimer' s disease related dementia; Back; Basic Science; Behavior; Black race; Caring; Cessation of life; Climacteric; Cognition; Communities; Creativeness; Dancing; Data; Dementia; Development; Diagnosis; Discrimination; Ensure; Ethnography; Event; Family; Fostering; Friends; Geography; Goals; Home; Impaired cognition; Intervention; Interview; Investigation; Knowledge; Label; Life; Location; Marriage; Measures; Medical Sociology; Methodology; Methods; Music; Newly Diagnosed; Patients; Personal Satisfaction; Persons; Professional Organizations; Qualifying; Reporting; Reproducibility; Research; Research Design; Role; Services; Site; Social Network; Social Well-Being; Source; Structural Racism; Testing; Time; United States; United States National Institutes of Health; Walking; cognitive neuroscience; community organizations; data integration; dementia caregiving; design; efficacy trial; experience; follow-up; functional disability; implementation trial; improved; innovation; mortality risk; novel strategies; online resource; participant observation; preservation; programs; recruit; response; shared memory; social; social relationships; social stigma; suicidal morbidity; therapy development

Project Summary/Abstract Nearly half a million people in the United States develop Alzheimer’s disease and related dementias each year. People newly diagnosed and their family and friends (care partners), report that these diagnoses can be terrifying and life-changing, even representing a form of social death. But responses to diagnosis can also be positive and creative. After people are diagnosed with a form of dementia, they and their care partners turn to community-based and online resources for support. Small qualitative studies show that they engage in music, preferred activities, and social networks to support personal identity and social relationships. Among these responses, music engagement, defined as the totality of listening, dancing and participating in preferred music activities, creates moments of joy despite dementia-related cognitive decline and functional impairment. Music is well studied in moderate and severe dementia, but we lack studies about impact of music on well-being in the months following a dementia diagnosis, when it might be most helpful as a support. After diagnosis, music is promising not only because of its role in well-being in later stage dementia, but because music supports identity and social relationships in moments of identity transformation, such as marriage or death. In this study, we examine the ways in which music impacts well-being immediately after a dementia diagnosis, and the ways in which positive effects persist over time. We do this by looking at well-being at three levels, personal, relationship, and community, placing these in the context of larger social and societal forces including stigma and discrimination. We will examine how music impacts personal well-being after dementia diagnosis, following 100 people newly diagnosed and 100 identified care partners (dyads) for six months using mixed-methods, including quantitative measures and qualitative interviews (Aim 1). Dyads will be recruited to ensure diversity of music engagement, from no music to everyday music engagement. Aim 1 findings are used to identify positive impacts of music on well-being that can be studied over time and a diverse sub-sample of dyads who have widely different ways of engaging in music. We will identify reproducible music behaviors that support well- being in relationships as dementia progresses, in a longitudinal ethnography of 50 dyads for up to two years in the home, using interviews, observations, and engagement in usual music activities (Aim 2). We place these findings in the context of online and community-based organization support, including on-line resources that incorporate music and participant observation in public events such as the Walk to End Alzheimer’s and publicly available online programs using music (Aim 3). The findings from these three aims will be used to identify best practices that we can bring back to the community-based organizations that serve people living with dementia and care partners. The findings will be synthesized to identify the key features necessary for the design and testing of new music-focused interventions to support people newly diagnosed with dementia and their care partners.

项目概要/摘要 美国每年有近 50 万人患有阿尔茨海默病和相关痴呆症。 新诊断的人及其家人和朋友（护理伙伴）报告说，这些诊断可能是 令人恐惧并改变生活，甚至代表了一种社会死亡。但对诊断的反应也可以是 积极且有创意。人们被诊断出患有某种形式的痴呆症后，他们和他们的护理伙伴会求助于 基于社区和在线资源的支持。小型定性研究表明他们从事音乐， 支持个人身份和社会关系的首选活动和社交网络。其中 反应、音乐参与度，定义为聆听、跳舞和参与喜欢的音乐的总和 尽管存在与痴呆相关的认知能力下降和功能障碍，但活动仍能创造欢乐时刻。音乐 在中度和重度痴呆症中进行了充分的研究，但我们缺乏关于音乐对健康的影响的研究 痴呆症诊断后的几个月，这可能是最有帮助的支持。诊断后，音乐 之所以有前途，不仅是因为它对晚期痴呆症的健康有重要作用，还因为音乐支持 身份转变时刻的身份和社会关系，例如结婚或死亡。在这项研究中， 我们研究了痴呆症诊断后音乐如何立即影响健康，以及如何影响健康 随着时间的推移，积极影响会持续存在。我们通过关注三个层面的福祉来做到这一点：个人、 关系和社区，将这些置于更大的社会和社会力量（包括耻辱）的背景下 和歧视。我们将研究音乐如何影响痴呆症诊断后的个人福祉，如下 使用混合方法在六个月内新诊断出 100 名患者并确定了 100 名护理伙伴（二人组）， 包括定量测量和定性访谈（目标 1）。将招募二人组以确保多样性 音乐参与，从没有音乐到日常音乐参与。目标 1 研究结果用于识别阳性 音乐对幸福感的影响可以随着时间的推移进行研究，并且有不同的二人子样本 参与音乐的方式多种多样。我们将确定可复制的音乐行为，以良好地支持 在一项长达两年的纵向民族志研究中，研究了随着痴呆症进展而建立的人际关系 在家中，通过访谈、观察和参与日常音乐活动（目标 2）。我们把这些 在线和社区组织支持背景下的调查结果，包括在线资源 将音乐和参与者观察融入公共活动中，例如步行结束阿尔茨海默病和 使用音乐的公开在线节目（目标 3）。这三个目标的调查结果将用于 确定我们可以带回为人们生活服务的社区组织的最佳实践 与痴呆症患者和护理伙伴一起。研究结果将被综合起来，以确定必要的关键特征 设计和测试新的以音乐为中心的干预措施，以支持新诊断出的痴呆症患者和 他们的护理伙伴。