Engaging and Supporting Care Partners of Persons With Dementia in Health-Care Delivery: Results From a National Consensus Conference
Catherine Riffin, Joan M. Griffin, Lilla Brody, Jennifer L. Wolff, Karl Pillemer, Ronald D. Adelman, Lauren R. Bangerter, Steven Starks, Francesca Falzarano, Martha Villanigro-Santiago, Loretta Veney, Sara J. Czaja
Abstract
More than 6 million adults in the United States are affected by Alzheimer’s disease and related dementias (ADRD), the majority of whom rely on assistance from an unpaid care partner (family, friends; Alzheimer’s Association, 2022). ADRD care partners assist with disease management tasks (Riffin et al., 2017) and perform critical functions within the health-care system, such as attending routine medical visits (Wolff & Roter, 2011), facilitating hospital discharge processes (Levine et al., 2010), and coordinating long-term services and supports (Kelly et al., 2013). Yet, care partners report feeling marginalized in medical encounters due to unmet needs for training and support (Burgdorf et al., 2019). If left unattended, these unmet needs can contribute to burnout for the care partner (Jennings et al., 2015), diminished quality of care for the patient (Black et al., 2019), and substantial...