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

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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.