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.

项目总结/摘要 在美国，每年有近50万人患上阿尔茨海默病和相关痴呆症。 新诊断的人和他们的家人和朋友（护理伙伴）报告说，这些诊断可能是 可怕的和改变生活的，甚至代表了一种形式的社会死亡。但对诊断的反应也可能 积极和创造性。当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转向 以社区为基础的和在线的支持资源。小型定性研究表明，他们从事音乐， 优选的活动，以及支持个人身份和社会关系的社交网络。其中 反应，音乐参与，定义为听，跳舞和参与首选音乐的整体 活动，创造欢乐的时刻，尽管痴呆症相关的认知能力下降和功能障碍。音乐 在中度和重度痴呆症中得到了很好的研究，但我们缺乏关于音乐对健康影响的研究， 在痴呆症诊断后的几个月里，它可能是最有帮助的支持。诊断后，音乐 不仅因为它在后期痴呆症中的健康作用，而且因为音乐支持 身份转变时刻的身份和社会关系，例如结婚或死亡。在本研究中， 我们研究了音乐在痴呆症诊断后立即影响幸福感的方式，以及 积极的影响会随着时间的推移而持续。我们从三个层面来看待幸福感，个人的， 关系和社区，将其置于更大的社会和社会力量的背景下， 和歧视。我们将研究音乐如何影响痴呆症诊断后的个人幸福感， 100名新诊断的人和100名确定的护理伙伴（二人组）使用混合方法进行了六个月的研究， 包括定量测量和定性访谈（目标1）。将招募二人组，以确保 从没有音乐到每天都有音乐。目的1结果用于识别阳性 音乐对幸福的影响，可以随着时间的推移和一个多样化的子样本的二元谁拥有 不同的方式参与音乐。我们将识别可重复的音乐行为，这些行为很好地支持- 随着痴呆症的进展，在长达两年的50对夫妇的纵向民族志中， 家庭，使用采访，观察，并参与通常的音乐活动（目标2）。我们把这些 在线和社区组织支持方面的调查结果，包括 将音乐和参与者的观察纳入公共活动，如步行结束阿尔茨海默氏症， 使用音乐的公开在线程序（目标3）。这三个目标的结果将用于 确定我们可以带回社区组织的最佳做法，为生活在贫困地区的人们提供服务。 痴呆症患者和护理伙伴。研究结果将被综合，以确定必要的关键特征， 设计和测试新的以音乐为重点的干预措施，以支持新诊断患有痴呆症的人， 他们的照顾伙伴。