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

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.

Grant Number: 1RF1AG082292-01A1
NIH Institute/Center: NIH
Principal Investigator: THERESA ALLISON