A Study to Develop and Test a Novel Infographic and Care Navigator Intervention to Empower Caregivers of Patients with Dementia
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This K23 application describes the background and experience of Leah Estrada, PhD, RN, and her plan to acquire the necessary skills to become an independent clinician-scientist and national leader at the intersection of palliative care and dementia care for family caregivers of persons with dementia (PWD). The goal of this proposal is to prepare caregivers for meaningful and effective primary care visits for the PWD through a pre- conversation communication-priming infographic guided by a care navigator. The proposed research is critical because: 1) dementia family caregivers are often unprepared to be the primary source of information on the PWD's dementia care, which leads to fragmented communication with clinicians; 2) primary care providers are on the frontlines of dementia care but need support to provide the highest quality care; and 3) when caregivers understand the progression of dementia, they are better equipped to communicate with primary care providers, which improves caregiver and PWD outcomes. The specific aims of this K23 are: 1) to identify caregiver and PWD communication preferences regarding dementia prognosis and disease trajectory (1:1 interviews with 25 caregiver-PWD dyads); 2) to a) co-design with the caregivers and PWD an infographic on the trajectory of dementia and its prognosis (employing user-centered design with caregiver-PWD dyadic interview sessions, n=25 caregiver-PWD dyads) and b) identify an optimal workflow with primary care providers to integrate a care navigator and the infographic into routine care (1:1 interviews with n=25 PCPs); and 3) to pilot the feasibility and acceptability of the care navigator + infographic intervention (caregiver-PWD dyads will be randomized to the intervention [n=30] or usual care [n=30]). We include patients with moderate dementia as subjects whenever possible in all three aims to ensure the inclusion of their voice when designing interventions to improve their care. The specific training objectives for this K23 are to gain advanced expertise and skills in: 1) geriatric and palliative care needs of PWD; 2) intervention development with user-centered design methods; 3) palliative care randomized trial design and implementation science methods: and 4) grantsmanship, leadership, and professional development. These training goals are supported by 1) my expert mentorship team led by my primary mentor, Dr. Siu (health care use and systems of care, geriatrics, and health policy), and co-mentors, Drs. Goldstein (palliative care, dementia, intervention development) and Cohen (palliative care, nursing science, responsible conduct of research); 2) a rich institutional environment (Icahn School of Medicine at Mount Sinai and the Mount Sinai Health System); and 3) targeted coursework, scientific meetings, and planned publications as well as training in the protection of human subjects. Together, results from the proposed research and training activities will support an R01 application to conduct a randomized controlled trial to test the proposed intervention to better support dementia caregivers in primary care settings, the key step to my becoming an independent investigator whose work aims to improve the lives of caregivers of older adults with dementia.
