5.4 million people in the United States live with dementia and, for those who live at home, 15 million family members and other caregivers provide unpaid care. Dementia caregiving is complicated by the increasing inability of people with dementia to communicate or even recognize those who care for them. Effective interventions are needed to support caregivers in order improve quality of life and to keep people with dementia out of institutional settings like nursing homes. Medications for dementia have been largely ineffective, and the medications used to treat behavioral issues in dementia have serious side effects. Behavioral approaches have become the first-line treatments and, among them, music appears particularly promising because musical activities draw on the shared memories and emotional bonds that hold dementia caregiving relationships together. Studies to date, however, are limited by size and poor study design. Nearly all have been conducted in institutional or clinical settings. Most are not intended to support caregivers. To our knowledge, only one small pilot study has been published that was designed to support caregivers in the home, and it did not include music. No studies have been published that closely examine the daily lives of in- home dementia caregiving. In order to address this gap, we propose to: (1) to develop an in-depth understanding of dementia caregiving relationships; (2) to develop an in-depth understanding of the role of music in the daily lives of dementia caregiving dyads; and (3) use the knowledge gained to design a music- based intervention to support people with dementia and their caregivers. In order to meet these aims, we will go to the homes of people with dementia and their caregivers, complete assessments and interview them about their experiences with caregiving and with music. We will spend time in the home observing and participating in normal caregiving activities, with and without music, in order to identify core features of music that can be used to design an effective, music-based intervention to improve quality of life for people with dementia and their caregivers in their homes. The candidate will recruit a socioeconomically diverse population in Northern California by recruiting participants from 2 medical house calls programs, one of which serves both urban and rural locations. The candidate has expertise in the medical care of people with dementia and with music anthropology research. The candidate does not have formal training in health sciences research and implementation science. Through a mixture of coursework, structured tutorials, and conferences, over the course of the award period the candidate will: (1) develop expertise in implementation science and dementia research; and (2) acquire skills and experience in the design and leadership of clinical trials involving diverse populations, in order to become a leading researcher in dementia and caregiver quality of life.
?The Potential for Music to Improve Quality of Life in Dementia Caregiving Relationships? is a study designed to address the stressors of dementia caregiving. Through in-home observations and assessments, it will identify the key features of music in supporting people with dementia and their caregivers. The knowledge gained will be used to design and refine a music-based intervention intended to reduce caregiver strain, reduce behavioral issues associated with dementia, and improve quality of life.
