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

项目摘要/摘要 美国每年有近50万人患上阿尔茨海默氏症和相关的痴呆症。 新诊断的患者及其家人和朋友(护理伙伴)报告说，这些诊断可能是 可怕的，改变生活的，甚至代表着一种社会死亡。但对诊断的反应也可能是 积极向上，富有创造力。在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 基于社区和在线的支持资源。小规模的定性研究表明，他们喜欢音乐， 首选活动，以及支持个人身份和社会关系的社交网络。其中包括 回应，音乐参与，定义为聆听、跳舞和参与首选音乐的总和 活动，创造了喜悦的时刻，尽管与痴呆症相关的认知能力下降和功能障碍。乐谱 在中度和重度痴呆症中研究得很好，但我们缺乏关于音乐对老年人幸福感影响的研究 在痴呆症确诊后的几个月里，这可能是最有帮助的支持。确诊后，音乐 这不仅是因为它在晚期痴呆症的幸福中所起的作用，而且因为音乐支持 身份转变时刻的身份和社会关系，如结婚或死亡。在这项研究中， 我们研究了音乐在诊断出痴呆症后立即影响幸福感的方式，以及 随着时间的推移，积极的影响会持续存在。我们通过从三个层面来观察幸福感，个人， 关系和社区，将这些置于包括污名在内的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，如下所示 使用混合方法对100名新诊断的患者和100名已确定的护理伙伴(DYAD)进行为期6个月的治疗， 包括定量测量和定性访谈(目标1)。将招募二人组，以确保 音乐参与，从没有音乐到日常音乐参与。目标1调查结果用于确定阳性 音乐对幸福感的影响可以随着时间的推移而研究，以及不同的二元组样本 参与音乐的方式大相径庭。我们将确定可再现的音乐行为，以支持良好的 随着痴呆症的进展，在长达两年的50对双胞胎的纵向人种学中，处于关系中 家庭，通过访谈、观察和参与通常的音乐活动(目标2)。我们把这些放在 在在线和基于社区的组织支持的背景下的调查结果，包括 在公共活动中融入音乐和参与者观察，如结束阿尔茨海默氏症和 使用音乐的公开在线节目(AIM 3)。这三个目标的结果将被用来 确定我们可以带回给服务于人们的社区组织的最佳实践 痴呆症患者和护理伙伴。调查结果将被综合起来，以确定 设计和测试新的以音乐为重点的干预措施，以支持新诊断的痴呆症患者和 他们的护理伙伴。

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.